The UN Convention on the Rights of Persons with Disabilities: A Commentary 9780198810667
This treatise is a detailed article-by-article examination of the United Nations Convention on the Rights of Persons wit
2,023 77 9MB
English Pages 1376 [1377] Year 2018
Polecaj historie
![Article 33 of the un Convention on the Rights of Persons with Disabilities : National Structures for the Implementation and Monitoring of the Convention [1 ed.]
9789004220829, 9789004220805](https://dokumen.pub/img/200x200/article-33-of-the-un-convention-on-the-rights-of-persons-with-disabilities-national-structures-for-the-implementation-and-monitoring-of-the-convention-1nbsped-9789004220829-9789004220805.jpg)
![Recognising Human Rights in Different Cultural Contexts: The United Nations Convention on the Rights of Persons with Disabilities (CRPD) [1st ed.]
9789811507854, 9789811507861](https://dokumen.pub/img/200x200/recognising-human-rights-in-different-cultural-contexts-the-united-nations-convention-on-the-rights-of-persons-with-disabilities-crpd-1st-ed-9789811507854-9789811507861.jpg)
Table of contents :
Cover
......Page 1
Title
......Page 4
Copyright
......Page 5
Summary Contents......Page 6
Detailed Contents......Page 10
Index......Page 1352
Citation preview
OXFORD COMMENTARIES ON INTERNATIONAL L AW General Editors: Professor Philip Alston, New York University, and Laurence Boisson de Chazournes, University of Geneva
The UN Convention on the Rights of Persons with Disabilities
The UN Convention on the Rights of Persons with Disabilities A Commentary
Edited by ILIAS BANTEKAS MICHAEL ASHLEY STEIN DIMITRIS ANASTASIOU
3
3 Great Clarendon Street, Oxford, OX2 6DP, United Kingdom Oxford University Press is a department of the University of Oxford. It furthers the University’s objective of excellence in research, scholarship, and education by publishing worldwide. Oxford is a registered trade mark of Oxford University Press in the UK and in certain other countries © The Several Contributors 2018 The moral rights of the authors have been asserted First Edition published in 2018 Impression: 1 All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, without the prior permission in writing of Oxford University Press, or as expressly permitted by law, by licence or under terms agreed with the appropriate reprographics rights organization. Enquiries concerning reproduction outside the scope of the above should be sent to the Rights Department, Oxford University Press, at the address above You must not circulate this work in any other form and you must impose this same condition on any acquirer Crown copyright material is reproduced under Class Licence Number C01P0000148 with the permission of OPSI and the Queen’s Printer for Scotland Published in the United States of America by Oxford University Press 198 Madison Avenue, New York, NY 10016, United States of America British Library Cataloguing in Publication Data Data available Library of Congress Control Number: 2018946136 ISBN 978–0–19–881066–7 Printed and bound by CPI Group (UK) Ltd, Croydon, CR0 4YY Links to third party websites are provided by Oxford in good faith and for information only. Oxford disclaims any responsibility for the materials contained in any third party website referenced in this work.
Summary Contents Preface Editors’ Biographies Contributor Biographies Abbreviations Table of Treaties and International Instruments Table of Cases Tables of Legislation
xxxi xxxiii xxxv xlix lix lxxvii lxxxix
Preamble1 Janet E Lord
Article 1: Purpose
35
Article 2: Definitions
63
Article 3: General Principles
84
Emily Kakoullis and Yoshikazu Ikehara Anna Nilsson
Sarah Arduin
Article 4: General Obligations
106
Article 5: Equality and Non-Discrimination
140
Article 6: Women with Disabilities
171
Article 7: Children with Disabilities
198
Article 8: Awareness-Raising
229
Article 9: Accessibility
258
Article 10: Right to Life
287
Article 11: Situations of Risk and Humanitarian Emergencies
314
Article 12 CRPD: Equal Recognition before the Law
339
Andrea Broderick
Jessica Lynn Corsi
Roxanne Mykitiuk and Ena Chadha Ilias Bantekas
Francisco Bariffi Anna Lawson
Smitha Nizar
Stephanie Motz
Lucy Series and Anna Nilsson
vi
Summary Contents
Article 13: Access to Justice
383
Article 14: Liberty and Security of the Person
402
Article 15: Protection against Torture and Cruel or Inhuman or Degrading Treatment or Punishment
426
Article 16: Freedom from Exploitation, Violence, and Abuse
466
Article 17: Protecting the Integrity of the Person
494
Article 18: Liberty of Movement and Nationality
508
Article 19: Living Independently and Being Included in the Community
530
Article 20: Personal Mobility
559
Article 21: Freedom of Expression and Opinion, and Access to Information
582
Article 22: Respect for Privacy
604
Article 23: Respect for Home and the Family
628
Article 24: Education
656
Article 25: Health
705
Article 26: Habilitation and Rehabilitation
734
Article 27: Work and Employment
764
Article 28: Adequate Standard of Living and Social Protection
801
Article 29: Participation in Political and Public Life
834
Article 30: Participation in Cultural Life, Recreation, Leisure, and Sport
863
Eilionóir Flynn
Michael Perlin and Eva Szeli
Phil Fennell
Amanda Keeling
Francesco Seatzu Lawrence Mute
János Fiala-Butora, Arie Rimmerman, and Ayelet Gur Lalin Kovudhikulrungsri and Aart Hendriks Eliza Varney
Molly Land, Anthony Giannoumis, Aga Kitkowska, and Maria Mikhaylova János Fiala-Butora
Dimitris Anastasiou, Michael Gregory, and James M Kauffman Penelope Weller
Jerome Bickenbach and Dimitrios Skempes
Ilias Bantekas, Facundo Pennilas, and Stefan Trömel Kevin Cremin
Ilze Grobelaar Du Plessis and Jehoshaphat Njau
Ilias Bantekas, Pok Yin Stephenson Chow, Stavroula Karapapa, and Eleni Polymenopoulou
Summary Contents
vii
Article 31: Statistics and Data Collection
924
Article 32: International Cooperation
955
Article 33: National Implementation and Monitoring
978
Mads Pedersen and Federico Ferretti
Janet E Lord and Michael Ashley Stein Valentin Aichele
Article 34: Committee on the Rights of Persons with Disabilities
1012
Article 35: Reports by States Parties
1038
Article 36: Consideration of Reports
1060
Article 37: Cooperation between States Parties and the Committee
1084
Article 38: Relationship of the Committee with Other Bodies
1105
Article 39: Report of the Committee
1119
Article 40: Conference of States Parties
1135
Article 41: The Secretary-General of the United Nations Shall Be the Depositary of the Present Convention
1145
Article 42: Signature
1150
Article 43: Consent to Be Bound
1156
Article 44: Regional Integration Organizations
1162
Article 45: Entry Into Force
1171
Article 46: Reservations
1175
Article 47: Amendments
1188
Article 48: Denunciation
1198
Katherine Guernsey Arlene Kanter
Helene Combrinck Kris Gledhill
Ilias Bantekas
Mary Pat Treuthart Ilias Bantekas
Ilias Bantekas Ilias Bantekas Ilias Bantekas
Jacob Katz Cogan Ilias Bantekas Ilias Bantekas
Konstantinos Magliveras Ilias Bantekas
viii
Summary Contents
Article 49: Accessible Format
1204
Article 50: Authentic Texts
1214
Optional Protocol to the Convention on the Rights of Persons with Disabilities
1218
Index
1257
Eliza Varney
Ilias Bantekas
Tina Stavrinaki
Detailed Contents Preface Editors’ Biographies Contributor Biographies Abbreviations Table of Treaties and International Instruments Table of Cases Tables of Legislation
xxxi xxxiii xxxv xlix lix lxxvii lxxxix
Preamble
1
1. Introduction
3
Janet E Lord 2. Background and Travaux Préparatoires 2.1 Legal Effect of Preambles under Public International Law 2.2 The States Parties to the Present Convention 3.1 Paragraph (a) 3.2 Paragraph (b) 3.3 Paragraph (c) 3.4 Paragraph (d) 3.5 Paragraph (e) 3.6 Paragraph (f ) 3.7 Paragraph (g) 3.8 Paragraph (h) 3.9 Paragraph (i) 3.10 Paragraph (j) 3.11 Paragraph (k) 3.12 Paragraph (l) 3.13 Paragraph (m) 3.14 Paragraph (n) 3.15 Paragraph (o) 3.16 Paragraph (p) 3.17 Paragraph (q) 3.18 Paragraph (r) 3.19 Paragraph (s) 3.20 Paragraph (t) 3.21 Paragraph (u) 3.22 Paragraph (v) 3.23 Paragraph (w) 3.24 Paragraph (x) 3.25 Paragraph (y)
4 7 8 8 9 10 11 12 14 16 17 18 19 19 20 21 22 23 24 25 27 27 28 29 31 31 32 32
Article 1: Purpose
35
1. Introduction
35
2. Background and Travaux Préparatoires 2.1 Purpose (Article 1, Paragraph 1) 2.2 Description of ‘Disability’ (Article 1, Paragraph 2)
39 40 44
Emily Kakoullis and Yoshikazu Ikehara
x
Detailed Contents
3. Paragraph 1 3.1 ‘The purpose of the present Convention’ 3.2 ‘to promote, protect, and ensure’ 3.3 ‘full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities’ 3.4 ‘to promote respect for their inherent dignity’
48 48 49
4. Paragraph 2 4.1 ‘Persons with disabilities’ 4.2 ‘include those who have long-term physical, mental, intellectual or sensory impairments’ 4.3 ‘which in interaction with various barriers’ 4.4 ‘may hinder their full and effective participation in society’ 4.5 ‘on an equal basis with others’
53 54
Article 2: Definitions
63
1. Introduction
64
2. Background and Travaux Préparatoires
64
3. ‘Communication’
68
4. ‘Language’
69
5. ‘Discrimination on the basis of disability’ 5.1 ‘on the basis of disability’ 5.2 ‘which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise’ 5.3 ‘on an equal basis with others’ 5.4 ‘all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field’ 5.5 ‘all forms of discrimination’
71 72
6. ‘Reasonable accommodation’ 6.1 ‘necessary and appropriate’ 6.2 ‘not imposing a disproportionate or undue burden’
78 80 80
7. ‘Universal design’
82
Article 3: General Principles
84
Anna Nilsson
Sarah Arduin
50 50
55 57 57 58
73 74 75 76
1. Introduction
84
2. Background and Travaux Préparatoires
85
3.
Paragraph (a) 3.1 ‘Respect for inherent dignity’ 3.2 ‘Individual autonomy’ 3.3 ‘Independence of persons’
90 90 92 94
4. Paragraph (b)—‘Non-discrimination’
94
5. Paragraph (c)—Full and Effective Participation and Inclusion in Society
96
6. Paragraph (d)—Respect for Difference and Acceptance of Persons with Disabilities as Part of Human Diversity and Humanity
99
7. Paragraph (e)—Equality of Opportunity
100
8. Paragraph (f)—Accessibility
101
9. Paragraph (g)—Equality between Men and Women
103
Detailed Contents
xi
10. Paragraph (h)—Respect for the Evolving Capacities of Children with Disabilities and Respect for the Right of Children with Disabilities to Preserve their Identities
103
Article 4: General Obligations
106
1. Introduction
107
2. Background and Travaux Préparatoires
108
3. Paragraph 1 3.1 Ensure and Promote the Full Realization of All Human Rights and Fundamental Freedoms for All Persons with Disabilities 3.2 Without Discrimination of Any Kind on the Basis of Disability 4.1 Paragraph 1(a) 4.1.1 All Appropriate Legislative, Administrative, and Other Measures 4.2 Paragraph 1(b) 4.3 Paragraph 1(c) 4.4 Paragraph 1(d) 4.4.1 Public Authorities and Institutions 4.5 Paragraph 1(e) 4.6 Paragraph 1(f ) 4.7 Paragraph 1(g) 4.8 Paragraph 1(h) 4.9 Paragraph 1(i) 4.9.1 ‘Training of professionals and staff working with persons with disabilities’
116
5. Paragraph 2 5.1 Progressive Realization 5.2 Maximum of Available Resources
131 131 132
6. Paragraph 3
134
7. Paragraph 4 7.1 Provisions which are More Conducive to the Realization of the Rights of Persons with Disabilities 7.2 No Restriction upon or Derogation from
137
8. Paragraph 5: All Parts of Federal States
138
Article 5: Equality and Non-Discrimination
140
1. Introduction
140
2. Background
142
3. Travaux Préparatoires
147
4. General Framework of Article 5
155
5. Paragraph 1
157
6. Paragraph 2
160
7. Paragraph 3
164
8. Paragraph 4
167
Article 6: Women with Disabilities
171
1. Introduction
171
Andrea Broderick
Jessica Lynn Corsi
Roxanne Mykitiuk and Ena Chadha
116 117 119 119 120 121 122 122 122 125 127 129 129 129
137 137
xii
Detailed Contents
2. Background
172
3. Travaux Préparatoires
177
4. Paragraph 1: Multiple Discrimination
184
5. Paragraph 2: Development, Advancement and Empowerment 5.1 ‘exercise and enjoyment of the human rights and fundamental freedoms set out in the present Convention’ 5.2 Interpretative Guidance 5.2.1 Article 16—Violence 5.2.2 Article 25—Health 5.2.3 Article 28—Standard of Living 5.2.4 Article 34—Committee on the Rights of Persons with Disabilities 5.2.5 Omissions
186
Article 7: Children with Disabilities
198
1. Introduction
198
2. Background
199
3. Travaux Préparatoires
201
4. Paragraph 1 4.1 A ‘child’ 4.2 ‘All necessary measures’ 4.2.1 Keeping Accurate Statistical Data 4.2.2 Early Intervention 4.2.3 Measures against Stigmatization 4.3 ‘all human rights and fundamental freedoms’ 4.3.1 Freedom from Violence 4.3.2 Abandonment 4.3.3 De-Institutionalization 4.3.4 Right to Life, Survival, and Development 4.4 ‘on an equal basis with other children’
205 205 206 207 208 209 210 211 213 214 216 218
5. Paragraph 2 5.1 The Child’s ‘best interests’ 5.2 Supported Decision-Making
219 219 222
6. Paragraph 3 6.1 The Child’s ‘right to be heard’ 6.1.1 The Collective Right to Be Heard 6.1.2 ‘due weight in accordance with their age and maturity’ 6.1.3 ‘disability and age-appropriate assistance’
224 224 226 227 227
Article 8: Awareness-Raising
229
1. Introduction and Background
230
2. Travaux Préparatoires
236
3. Paragraph 1 3.1 Duty ‘to adopt immediate, effective and appropriate measures’ 3.2 Paragraph 1(a) 3.3 Paragraph 1(b) 3.4 Paragraph 1(c)
241 244 245 246 249
Ilias Bantekas
Francisco Bariffi
188 189 189 191 193 194 195
Detailed Contents
xiii
4. Paragraph 2 4.1 Paragraph 2(a) 4.2 Paragraph 2(b) 4.2.1 Examples of Good Practices 4.3 Paragraph 2(c) 4.3.1 Examples of Good Practices 4.4 Paragraph 2(d) 4.4.1 Examples of Good Practices
250 250 253 254 254 255 256 257
Article 9: Accessibility
258
1. Introduction
259
2. Background and Travaux Préparatoires 2.1 Early Incarnations of Article 9 2.2 The Relationship Between Article 9 and Other CRPD Provisions 2.3 The Scope and Emphasis of Article 9 2.4 Nature of the Obligation
262 262 262 265 266
3. Paragraph 9(1) 3.1 ‘To enable persons with disabilities to live independently and participate fully in all aspects of life’ 3.2 ‘Appropriate Measures to Ensure’ 3.3 ‘Access, on an Equal Basis with Others’ 3.4 ‘Physical Environment’ 3.5 ‘Information and Communications, Including Information and Communications Technologies and Systems’ 3.6 ‘Other Facilities and Services Open or Provided to the Public’ 3.7 ‘Identification and Elimination of Obstacles and Barriers’ 3.8 ‘Accessibility’
268
4. Paragraph 9(2) 4.1 Paragraph 9(2)(a)—‘Minimum Standards and Guidelines’ 4.2 Paragraph 9(2)(b) 4.3 Paragraph 9(2)(c)—‘Training for Stakeholders’ 4.4 Paragraph 9(2)(d) 4.5 Paragraph 9(2)(e) 4.6 Paragraph 9(2)(f ) 4.7 Paragraph 9(2)(g) 4.8 Paragraph 9(2)(h)
281 281 282 283 283 284 284 285 285
Article 10: Right to Life
287
1. Introduction
287
2. Background and Travaux Préparatoires
288
3. Paragraph 1 3.1 ‘Inherent right to life’ 3.2 The Right to Life from the Perspective of Equality and Non-Discrimination 3.3 Right to Life and Right to Health of Disabled Persons 3.4 Right to Life and Quality of Life 3.4.1 Quality Adjusted Life Years (QALY) and Disability Adjusted Life Years (DALY) 3.5 Right to Life and Assisted Suicide 3.6 Right to Life Versus Pre-Natal Selection and Disability-Selective Abortion
296 296 299 301 302
Anna Lawson
Smitha Nizar
268 269 273 274 275 277 279 279
302 304 305
xiv
Detailed Contents
3.7 ‘on an equal basis with others’ 3.8 Medical Interventions 3.8.1 Medical Assistance to End Life by Reason of Disability 3.9 Killing Newborn with Disabilities
311 311 312 313
Article 11: Situations of Risk and Humanitarian Emergencies
314
1. Introduction
314
2. Background and Travaux Préparatoires
316
3. Persons with Disabilities in Situations of Risk
318
4. ‘obligations under international law’ 4.1 ‘international humanitarian law’ 4.2 ‘international human rights law’
319 320 323
5. ‘take all necessary measures’ to Ensure the Protection and Safety of Persons with Disabilities
327
6. ‘situations of armed conflict, humanitarian emergencies’ 6.1 ‘natural disasters’
330 332
7. Persons at Risk 7.1 Refugees, Asylum Seekers, Migrants, and Internally Displaced Persons with Disabilities in Situations of Risk 7.2 Women and Girls with Disabilities in Situations of Risk 7.3 Children with Disabilities in Situations of Risk
334
Article 12 CRPD: Equal Recognition before the Law
339
Stephanie Motz
Lucy Series and Anna Nilsson
334 337 337
Lucy Series 1. Introduction
340
2. Background and Travaux Préparatoires
342
3. Paragraph 1 3.1 States Parties Reaffirm that Persons with Disabilities Have the Right to Recognition Everywhere as Persons before the Law
348
4. Paragraph 2 4.1 Defining Legal Capacity 4.2 Distinguishing Legal Capacity and Mental Capacity 4.3 Enjoyment of Legal Capacity ‘on an equal basis with others’ 4.4 Legal Capacity and Criminal Law 4.5 Evaluating Equalities and Discrimination Arguments about Legal Capacity
349 349 352 354 358 362
5. Paragraph 3 5.1 Support for the Exercise of Legal Capacity 5.2 Supported Decision-Making
363 364 366
6. Paragraph 4 6.1 Respect for the Rights, Will, and Preferences of the Person 6.2 Conflicts of Interest and Undue Influence 6.3 Regular Review by a Competent, Independent, and Impartial Authority or Judicial Body 6.4 The Safeguards Shall Be Proportional to the Degree to which Such Measures Affect the Person’s Rights and Interests
368 369 370
349
371 372
Anna Nilsson 7. Paragraph 5 7.1 Background and Travaux Préparatoires
373 373
Detailed Contents 7.2 The Equal Right to Own and Inherit Property 7.3 The Equal Right to Control One’s Financial Affairs 7.4 Equal Access to Bank Loans, Mortgages, and Financial Credit
xv 374 376 380
Article 13: Access to Justice
383
1. Introduction
383
2. Background and Travaux Préparatoires
384
3. Paragraph 1 3.1 ‘Effective’ Access to Justice 3.2 ‘On an equal basis’ 3.3 ‘Procedural and age-appropriate accommodations’ 3.4 Direct and Indirect Participants, Including as Witnesses 3.5 All Legal Proceedings, Including at Preliminary Stages
390 390 391 393 396 398
4. Paragraph 2
400
Article 14: Liberty and Security of the Person
402
1. Introduction
402
2. Background and Travaux Préparatoires
403
3. Paragraph 1(a)
406
4. Paragraph 1(b) 4.1 Unlawful and Arbitrary Deprivation of Liberty 4.2 ‘in conformity with the law’ 4.3 Therapeutic Jurisprudence
408 408 411 415
5. Paragraph 2 5.1 Human Rights Guarantees 5.2 Therapeutic Jurisprudence in Paragraph 2
418 422 424
Article 15: Protection against Torture and Cruel or Inhuman or Degrading Treatment or Punishment
426
1. Introduction
426
2. Background and Travaux Préparatoires
430
3. Paragraph 1 3.1 ‘Free Consent’ and Personal Autonomy 3.1.1 Detention on Grounds of Unsoundness of Mind 3.1.2 Guardianship on Grounds of Mental Incapacity 3.2 Torture 3.2.1 Severe Mental or Physical Pain and Suffering 3.2.2 Intent: Torture and Cruel, Inhuman, or Degrading Treatment 3.2.3 State Involvement 3.2.4 Prohibited Purpose 3.3 ‘Medical or Scientific Experimentation without his or her free consent’
436 436 438 438 442 445 446 447 448 449
4. Paragraph 2 4.1 Effective Preventive Measures 4.1.1 Psychiatric Drugs Given without Consent 4.1.2 Sterilization and Other Reproductive Rights Violations 4.1.3 Female Genital Mutilation
450 450 451 452 458
Eilionóir Flynn
Michael Perlin and Eva Szeli
Phil Fennell
xvi
Detailed Contents 4.1.4 Surgical Castration 4.1.5 Electro Convulsive Therapy (ECT), Unmodified ECT, and Use of ECT on Children 4.1.6 Seclusion, Caged Beds, and Other Restraints 4.1.7 Oppressive and Coercive Treatment Regimes 4.1.8 Failure to Give Adequate Medical Treatment or Pain Relief 4.1.9 Conditions of Detention
458
Article 16: Freedom from Exploitation, Violence, and Abuse
466
1. Introduction
467
2. Background and Travaux Préparatoires 2.1 Scope: Types of Harm Included in ‘exploitation, violence and abuse’ 2.2 Torture, Involuntary Treatment, and Informed Consent 2.3 Vulnerability of Disabled People and Prevention of Harm
468 468 470 475
3. Paragraph 1 3.1 ‘All appropriate legislative, administrative, social, education and other measures to protect’ 3.2 ‘Within and outside the home’ 3.3 ‘All forms of exploitation, violence and abuse, including their gender-based aspects’
479
4. Paragraph 2 4.1 Preventative Measures, Ensuring ‘appropriate gender-and age-sensitive assistance and support’ 4.2 ‘Including through the provision of information and education on how to avoid, recognize and report instances’ 4.3 Ensure that Protection Services Are Age-, Gender-, and Disability-Sensitive
484
5. Paragraph 3 5.1 ‘All facilities and programmes’ 5.2 ‘Effectively monitored by independent authorities’
487 487 490
6. Paragraph 4 6.1 Measures to Promote the Physical, Cognitive, and Psychological Recovery, Rehabilitation, and Social Integration
490
7. Paragraph 5 7.1 Effective Legislation and Policies . . . to Ensure Instances are Identified, Investigated and, where Appropriate, Prosecuted 7.2 Including Women-and Children-Focused Legislation and Policies
492
Article 17: Protecting the Integrity of the Person
494
1. Introduction
494
2. Travaux Préparatoires
495
3. The Right to Personal Integrity in the European Convention on Human Rights
497
4. The Right to Personal Integrity in the EU Charter of Fundamental Rights
498
5. The Right to Personal Integrity 5.1 Seclusion and Restrain 5.2 Forced Sterilization
500 504 505
Amanda Keeling
Francesco Seatzu
459 460 462 463 463
479 481 482
484 485 486
490
492 493
Detailed Contents
xvii
Article 18: Liberty of Movement and Nationality
508
1. Introduction
508
2. Background and Travaux Préparatoires
510
3. Paragraph 1 3.1 Chapeau of Paragraph 1 3.1.1 ‘right of persons with disabilities to liberty of movement . . . freedom to choose their residence and to a nationality’ 3.1.2 Liberty of Movement and Residence 3.1.3 Interlinkages with Other Rights 3.1.4 Movement within the Borders of a Country 3.1.5 Freedom of Choice of Travel 3.2 Paragraph 1(a): Have the Right to Acquire and Change a Nationality and [to] not [Be] Deprived of . . . Nationality Arbitrarily or on the Basis of Disability 3.3 Paragraph 1(b) 3.4 Paragraph 1(c): Are Free to Leave Any Country, Including Their Own 3.5 Paragraph 1(d)
513 513
4. Paragraph 2
528
Article 19: Living Independently and Being Included in the Community
530
1. Introduction
530
2. Background and Travaux Préparatoires
533
3. Article 19: Chapeau 3.1 Measures Appropriate and Effective 3.2 De-Institutionalization 3.3 The Conjunction of Article 19 with Other CRPD Provisions 3.4 The Israeli Panel of Experts Paradigm
536 536 538 542 543
4. Paragraph (a)
547
5. Paragraph (b)
552
6. Paragraph (c)
555
Article 20: Personal Mobility
559
1. Introduction
559
2. Background and Travaux Préparatoires 2.1 Interrelationship between Article 20 and other CRPD Articles
561 567
3. Paragraph 1 3.1 Effective Measures 3.2 Personal Mobility 3.3 Greatest Possible Independence
567 568 569 569
4. Paragraph (a) 4.1 Affordable Cost
569 572
5. Paragraph (b) 5.1 Quality 5.2 Mobility Aids, Devices, Assistive Technologies 5.3 Live Assistance
572 572 573 576
Lawrence Mute
János Fiala-Butora, Arie Rimmerman, and Ayelet Gur
Lalin Kovudhikulrungsri and Aart Hendriks
513 514 516 518 519 520 522 526 527
xviii
Detailed Contents
5.4 Intermediaries 5.5 Affordable Cost
578 579
6. Paragraph (c)
580
7. Paragraph (d)
581
Article 21: Freedom of Expression and Opinion, and Access to Information
582
1. Introduction
582
2. Background and Travaux Préparatoires
583
3. Paragraph 1 (Chapeau)
586
4. Subparagraph (a)
590
5. Subparagraph (b)
595
6. Subparagraph (c)
596
7. Subparagraph (d)
599
8. Subparagraph (e) ‘Recognizing and promoting the use of sign languages’
601
Article 22: Respect for Privacy
604
1. Introduction and Background
604
2. Travaux Préparatoires
606
3. Paragraph 1 3.1 No Person with Disabilities 3.2 Regardless of Place of Residence or Living Arrangement 3.3 Arbitrary or Unlawful Interference 3.4 Unlawful 3.5 Arbitrary 3.6 Purpose 3.7 Public and Private Action 3.8 Privacy, Family, Home, Correspondence, and Communication 3.9 Privacy 3.10 Family 3.11 Home 3.12 Correspondence and Communication 3.13 Unlawful Attacks on Honour and Reputation of Persons with Disabilities 3.14 Right to Protection of Law Against Interference
608 609 609 610 610 611 612 613 613 614 618 619 619 622 622
4. Paragraph 2 4.1 Protection of Personal, Health, and Rehabilitation Information on an Equal Basis with Others 4.2 EU General Data Protection Regulation
625
Article 23: Respect for Home and the Family
628
1. Introduction
629
2. Background and Travaux Préparatoires
630
3. Paragraph 1 3.1 Effective and Appropriate Measures to Eliminate Discrimination 3.2 All Matters Relating to Marriage, Family, Parenthood, and Relationships 3.3 On an Equal Basis with Others
635 635 637 639
Eliza Varney
Molly Land, Anthony Giannoumis, Aga Kitkowska, and Maria Mikhaylova
János Fiala-Butora
625 626
Detailed Contents
xix
4. Paragraph 1(a)
640
5. Paragraph 1(b)
642
6. Paragraph 1(c)
644
7. Paragraph 2
645
8. Paragraph 3
649
9. Paragraph 4
651
10. Paragraph 5
654
Article 24: Education
656
1. Introduction and Background
657
2. Travaux Préparatoires
666
3. Paragraph 1 (Chapeau): The Right of Persons with Disabilities to Education
670
4. Paragraph 2 4.1 Paragraph 2(a): Non-Exclusion 4.2 Paragraph 2(b): Accessibility 4.2.1 Access to an Inclusive, Quality, and Free Primary Education and Secondary Education on an Equal Basis 4.2.2 On an Equal Basis with Others in the Communities in which They Live 4.3 Paragraph 2(c): Reasonable Accommodation 4.4 Paragraph 2(d): Individualized Support 4.5 Paragraph 2(e): The Educational Environment 4.5.1 Full Inclusion 4.5.2 Full Inclusion as Totally Supportive Environments 4.5.3 Special Education 4.5.4 The Right to Choose a School
674 675 678
5. Paragraph 3 5.1 Accessibility 5.2 Environments which Maximize Academic and Social Development for Students with Sensory Disabilities 5.3 Appropriate Measures—Facilitating Learning 5.4 Narrow View of Appropriate Measures
696 696
6. Paragraph 4 6.1 Appropriate Measures—Teacher Training 6.2 Prioritizing Certain Disabilities
700 700 702
7. Paragraph 5: Tertiary Education and Life-Long Learning
703
Article 25: Health
705
1. Introduction
706
2. Background and Travaux Préparatoires
711
3. Article 25 (Chapeau) 3.1 Reasonable Accommodation 3.2 Health Services that Are Gender-Sensitive
716 717 718
4. Paragraph (a)
719
5. Paragraph (b)
722
6. Paragraph (c)
723
Dimitris Anastasiou, Michael Gregory, and James M Kauffman
Penelope Weller
678 681 682 685 686 686 689 690 694
698 698 699
xx
Detailed Contents
7. Paragraph (d) 7.1 Free and Informed Consent 7.2 The Interaction between Article 12 and Article 25 7.3 Human Rights Training of Health Professionals
724 724 727 730
8. Paragraph (e)
731
9. Paragraph (f)
732
Article 26: Habilitation and Rehabilitation
734
1. Introduction
734
2. Background
737
3. Travaux Préparatoires
739
4. Paragraph 1 (Chapeau) 4.1 ‘organize, strengthen and extend comprehensive habilitation and rehabilitation services’ 4.2 ‘particularly in the areas of health, employment, education and social services’
745
5. Paragraph 1(a)
756
6. Paragraph 1(b)
757
7. Paragraph 2
760
8. Paragraph 3 8.1 Women, Children, Older Persons, and Migrants with Disabilities
761 762
Article 27: Work and Employment
764
1. Introduction
765
2. Background
766
3. Travaux Préparatoires
768
4. Paragraph 1: Chapeau 4.1 Sub-paragraph 1(a) 4.2 Sub-paragraph 1(b) 4.2.1 Equal Remuneration for Work of Equal Value 4.2.2 Safe and Healthy Working Conditions 4.2.3 Equal Opportunity to Be Promoted 4.2.4 Rest, Leisure, Working Hours, and Holidays 4.2.5 Protection from Harassment 4.2.6 Remedies and Redress of Grievances 4.3 Sub-paragraph 1(c) 4.4 Sub-paragraph 1(d) 4.5 Sub-paragraph 1(e) 4.5.1 The State Obligation to Counter Exclusion by Promoting Employment 4.6 Sub-paragraph 1(f ) 4.7 Sub-paragraph 1(g) 4.8 Sub-paragraph 1(h) 4.9 Sub-paragraph 1(i) 4.10 Sub-paragraph 1(j) 4.11 Sub-paragraph 1(k)
771 773 777 777 779 780 780 781 782 783 784 785
5. Paragraph 2
799
Jerome Bickenbach and Dimitrios Skempes
Ilias Bantekas, Facundo Pennilas, and Stefan Trömel
750 755
787 788 789 790 793 798 798
Detailed Contents
xxi
Article 28: Adequate Standard of Living and Social Protection
801
1. Introduction
802
2. Background and Travaux Préparatoires
802
3. Paragraph 1 3.1 Adequate Standard of Living 3.2 Their Families 3.3 Adequate Food, Clothing, and Housing 3.4 Continuous Improvement of Living Conditions 3.5 Appropriate Steps
805 806 806 807 810 810
4. Paragraph 2 4.1 Social Protection
811 812
5. a. To ensure equal access by persons with disabilities to clean water . . . 5.1 Equal Access 5.2 Clean Water Services 5.3 Access to Appropriate and Affordable Services, Devices, and Other Assistance for Disability-Related Needs
815 815 816
Kevin Cremin
818
6. b. To ensure access . . . in particular women and girls with disabilities and older persons with disabilities, to social protection programmes . . . 6.1 Access 6.2 Women and Girls with Disabilities 6.3 Older Persons with Disabilities 6.4 Social Protection Programmes and Poverty Reduction Programmes
820 820 821 822 823
7. c. To ensure access . . . to assistance from the State with disability-related expenses, including adequate training . . . 7.1 Situations of Poverty 7.2 Assistance from the State 7.3 Disability-Related Expenses
825 826 828 828
8. d. To ensure access by persons with disabilities to public housing programmes
830
9. e. To ensure equal access by persons with disabilities to retirement benefits and programmes
832
Article 29: Participation in Political and Public Life
834
1. Introduction
835
2. Background and Travaux Préparatoires
835
3. Article 29 Chapeau 3.1 Exclusions or Restrictions in the Chapeau 3.2 Legal Capacity
843 845 846
4. Paragraph (a) 4.1 Participation 4.2 Participate Directly (Right to Vote) or through Representatives (to Be Elected)
849 849 850
5. Paragraph (a)(i) 5.1 Accessible Voting 5.2 Accessibility 5.3 Equality in Voting Procedures
851 851 853 854
6. Paragraph (a)(ii)
854
7. Paragraph (a)(iii) 7.1 Assistance in Voting 7.2 Article 29(a) Exclusion and/or Restrictions to the Right to Vote and Be Elected
857 858 859
Ilze Grobelaar Du Plessis and Jehoshaphat Njau
xxii
Detailed Contents
8. Paragraph (b) 8.1 Effective and Fully Participate in the Conduct of Public Affairs
860 861
9. Paragraph (b)(i) and (ii)
862
Article 30: Participation in Cultural Life, Recreation, Leisure, and Sport
863
Ilias Bantekas, Pok Yin Stephenson Chow, Stavroula Karapapa, and Eleni Polymenopoulou Ilias Bantekas 1. General Introduction
864
2. Background
866
3. Travaux Préparatoires
867
Pok Yin Stephenson Chow 4. Paragraph 1 4.1 Paragraph 1 (Chapeau) 4.1.1 The Right to Take Part in Cultural Life 4.1.2 Culture as a ‘way of life’ and Implications on the ‘cultural space’ 4.1.3 Appropriate Measures to Ensure Access to Culture 4.1.4 National Accessibility Plans 4.2 Paragraph (1)(a) 4.3 Paragraph (1)(b) 4.4 Paragraph (1)(c)
872 875 875 877 878 880 880 882 883
5. Paragraph 2 5.5.1 To Develop and Utilize One’s Creative, Artistic, and Intellectual Potential 5.5.2 Eliminating Social Barriers and Promoting an Inclusive Society 5.5.3 Providing Equal Opportunities in the Field of Culture
884 884 885 886
Stavroula Karapapa 6. Paragraph 3 6.1 The Debates on Intellectual Property in the Travaux 6.2 ‘all appropriate steps’ 6.3 ‘in accordance with international law’ 6.4 Laws Protecting Intellectual Property Rights 6.5 ‘unreasonable or discriminatory barrier to access cultural materials’
888 888 890 893 895 897
Eleni Polymenopoulou 7. Paragraph 4 7.1 ‘Cultural identity’ 7.1.1 Meaning and Scope 7.1.2 States’ Obligations (‘recognition and support’) 7.1.3 Interpretation and Practice under the CRPD 7.2 Sign Languages 7.3 Deaf Culture 7.4 Linguistic Identity 7.4.1 Meaning and Scope 7.4.2 States Obligations (‘recognition and support’) 7.4.3 Interpretation and CRPD-Related Practice
897 897 897 901 903 904 906 907 907 907 908
Ilias Bantekas 8. Paragraph 5 8.1 Chapeau 8.1.1 ‘enabling participation in sport, leisure and recreation’ 8.1.2 ‘leisure and recreation’
909 909 909 910
Detailed Contents 8.1.3 ‘sporting activities’ 8.2 Paragraph 5(a) 8.2.1 ‘mainstreaming’ 8.3 Paragraph 5(b) 8.3.1 ‘organise, develop and participate’ 8.3.2 ‘appropriate instruction, training and resources’ 8.4 Paragraph 5(c) 8.4.1 Accessible Tourism 8.5 Paragraph 5(d) 8.6 Paragraph 5(e)
Article 31: Statistics and Data Collection Mads Pedersen and Federico Ferretti
xxiii 912 913 914 915 915 916 916 917 919 921 924
Mads Pedersen 1. Introduction
925
2. Background and Travaux Préparatoires
925
3. Paragraph 1 3.1 ‘Undertake to collect’ 3.2 ‘Appropriate information’ 3.3 ‘Give effect’ to the CRPD
929 929 931 933
Federico Ferretti 4. Paragraph 1(a) 4.1 Legally Established Safeguards 4.2 Data Protection
935 936 938
Mads Pedersen 5. Paragraph 1(b): ‘internationally accepted norms’
944
6. Paragraph 2 6.1 ‘disaggregated’ 6.2 ‘assess the implementation’
944 944 948
7. Paragraph 3 7.1 ‘Dissemination’ and ‘Accessibility’ 7.2 Indicators as a Tool to Implement and Monitor the CRPD
949 949 949
Article 32: International Cooperation
955
1. Introduction and Background
955
2. Travaux Préparatoires
958
3. Paragraph 1: Chapeau 3.1 ‘[s]uch measures could include, inter alia’ 3.2 Paragraph 1(a) 3.3 Paragraph 1(b) 3.4 Paragraph 1(c) 3.5 Paragraph 1(d)
963 965 965 967 970 971
4. Paragraph 2 4.1 The Interpretive Arc of Article 32 4.2 CRPD Committee Practice in Overseeing the Implementation of Article 32 4.3 Whither Disability Inclusion as a Necessary Element of Sustainable Development?
971 974
Janet E Lord and Michael Ashley Stein
975 976
xxiv
Detailed Contents
Article 33: National Implementation and Monitoring
978
1. Introduction
979
2. Background and Interpretative Approach
982
3. Travaux Préparatoires
985
4. Paragraph 1 4.1 ‘shall designate one or more focal points within government’ 4.2 ‘one or more’ 4.3 ‘a coordination mechanism within government’ 4.4 ‘shall give due consideration’
987 987 988 989 990
5. Paragraph 2 5.1 ‘the principles relating to the status and functioning of national institutions for protection and promotion of human rights’ 5.2 ‘shall take into account’ 5.3 ‘maintain, strengthen, designate or establish within the State Party, a framework’ 5.4 Independence 5.4.1 Independence of the ‘mechanism’ 5.4.2 Degree of Independence of Other Framework Components 5.5 Persons with Disabilities as Framework Agents 5.6 Monitoring 5.7 Fact-Finding and Indicators 5.8 Adequately Resourced 5.9 The Potential Role of National Human Rights Institutions 5.9.1 Monitoring Function: An Important Addition to the NHRI Mandate 5.9.2 Further Resources 5.9.3 The Actual Experience by NHRIs 5. 10 Cooperation between the Framework and the CRPD Committee
991
Vincent Aichele
992 993 995 996 996 998 998 999 1000 1001 1002 1005 1006 1006 1006
6. Paragraph 3 6.1 Scope 6.2 Views of the CRPD Committee 6.3 ‘in the monitoring process’ 6.4 ‘civil society’ 6.5 ‘in particular persons with disabilities and their representative organizations’ 6.6 Participation in the Monitoring Framework: Institutional Solutions 6.7 Implementation by the European Union (Sentences 1–3)
1007 1007 1008 1008 1009
Article 34: Committee on the Rights of Persons with Disabilities
1012
Katherine Guernsey
1009 1009 1010
1. Introduction
1013
2. Background and Travaux Préparatoires
1016
3. Paragraph 1
1024
4. Paragraph 2
1024
5. Paragraph 3 5.1 ‘when nominating their candidates, States Parties . . .’
1025 1027
6. Paragraph 4 6.1 ‘equitable geographic distribution’ 6.2 ‘balanced gender representation’ 6.3 ‘participation of experts with disabilities’
1027 1028 1029 1030
Detailed Contents
xxv
7. Paragraph 5
1031
8. Paragraph 6
1032
9. Paragraph 7
1033
10. Paragraph 8
1033
11. Paragraph 9
1033
12. Paragraph 10
1034
13. Paragraph 11
1035
14. Paragraph 12
1036
15. Paragraph 13
1036
Article 35: Reports by States Parties
1038
1. Introduction
1038
2. Background and Travaux Préparatoires
1039
3. Paragraph 1 3.1 The Requirement of a Country Report within Two Years of Ratification 3.2 The Requirement of a Comprehensive Report 3.2.1 A Comparison of Compliance with Article 35’s Reporting Requirements and the Reporting Requirements of Other Treaties
1044 1044 1045
Arlene Kanter
1046
4. Paragraph 2: The Requirement of a Country Report Every Four Years after the Initial Report
1047
5. Paragraph 3 5.1 The CRPD Committee’s Guidelines
1047 1047
6. Paragraph 4 6.1 A ‘Comprehensive’ Report as a Result of an ‘Open’ and ‘transparent process’ 6.2 Best Practices Identified in Concluding Observations 6.3 Shadow Reports
1049 1049 1052 1053
7. Paragraph 5: ‘Indicate factors and difficulties affecting the degree of fulfilment of obligations under the present Convention by States Parties’
1054
Article 36: Consideration of Reports
1060
1. Introduction
1061
2. Background and Travaux Préparatoires
1063
3. Paragraph 1 3.1 ‘Each report shall be considered by the Committee’ 3.1.1 Constructive Dialogue 3.1.2 List of Issues 3.1.3 Country Rapporteur 3.1.4 Simplified Reporting Procedure 3.2 ‘which shall make such suggestions and general recommendations on the report as it may consider appropriate’ 3.2.1 Concluding Observations 3.2.2 Follow-up to Concluding Observations 3.2.3 Early Awareness and Urgent Action Procedures 3.3 ‘shall forward these to the State Party concerned’ 3.4 ‘The State Party may respond with any information it chooses to the Committee’
1066 1066 1067 1068 1069 1069
Helene Combrinck
1071 1072 1074 1076 1077 1078
xxvi
Detailed Contents
4. Paragraph (2) 4.1 ‘If a State Party is significantly overdue in the submission of a report’ 4.2 ‘reliable information’
1078 1079 1080
5. Paragraph (3)
1080
6. Paragraph (4)
1081
7. Paragraph (5) 7.1 ‘to the appropriate specialised agencies, funds and programmes of the United Nations’ 7.2 ‘and other competent bodies’ 7.3 ‘request or indication of a need’ 7.4 ‘technical advice or assistance’ 7.5 ‘along with the Committee’s observations and recommendations, if any’
1082
Article 37: Cooperation between States Parties and the Committee
1084
1. Introduction
1084
2. Background, Context, and Travaux Préparatoires
1085
3. Paragraph 1 3.1 The Committee and its Members 3.2 The Mandate 3.3 Cooperation with Reporting 3.4 Cooperation with General Comments 3.5 Cooperation with the Early Awareness and Urgent Action Procedures 3.6 Cooperation with the Communication Process 3.7 Cooperation with the Inquiry Process
1088 1088 1089 1090 1093 1094 1095 1096
4. Paragraph 2 4.1 ‘The Committee shall give due consideration to . . . enhancing national capacities’ 4.2 Ways and Means 4.3 Enhancing National Capacities for Implementation 4.4 Including through International Cooperation 4.5 Implications in Relation to Reporting 4.6 Implications for the Communication Process 4.7 Implications for the Inquiry Process and the ‘early awareness and urgent action procedures’
1097 1098 1099 1099 1101 1101 1103
Article 38: Relationship of the Committee with Other Bodies
1105
1. Introduction
1105
2. Background and Travaux Préparatoires
1106
3. Chapeau
1107
4. Paragraph (a) 4.1 Specialized Agencies 4.2 UN Organs 4.3 Other Competent Bodies 4.4 Role and Function of Other Bodies 4.5 ‘invitation’ 4.6 ‘within the scope of their mandate’ 4.7 Submission of Written and Oral Information by NGOs
1108 1108 1110 1111 1113 1115 1115 1116
5. Paragraph (b) 5.1 ‘shall consult’
1117 1117
Kris Gledhill
Ilias Bantekas
1082 1083 1083 1083 1083
1104
Detailed Contents
xxvii
Article 39: Report of the Committee
1119
1. Introduction
1119
2. Background and Travaux Préparatoires
1120
3. Paragraph 1 3.1 Reporting Requirement 3.2 Suggestions and General Recommendations 3.3 Formulation of CRPD General Comments 3.4.1 General Comment No 1 (2014) on Equal Recognition before the Law 3.4.2 General Comment No 2 (2014) on Accessibility 3.4.3 General Comment No 3 (2016) on Women and Girls with Disabilities 3.4.4 General Comment No 4 (2016) on the Right to an Inclusive Education 3.4.5 General Comment No 5 on the Right to Live Independently and Be Included in the Community 3.5 The Inquiry Procedure
1121 1121 1124 1128 1130 1131 1131
Article 40: Conference of States Parties
1135
1. Introduction
1135
2. Background and Travaux Préparatoires
1136
3. Paragraph 1 3.1 Legal Personality 3.2 Organization of the Conference 3.2.1 Sources 3.2.2 Organization 3.2.3 Meetings 3.3 Competence of the Conference
1138 1138 1139 1139 1140 1142 1142
4. Paragraph 2
1144
Article 41: The Secretary-General of the United Nations Shall Be the Depositary of the Present Convention
1145
1. Introduction
1145
2. Background and Travaux Préparatoires
1145
3. Functions of Depositaries
1146
4. Powers of Depositaries
1148
5. Depositary Notifications
1148
6. The Obligation to Notify the Depositary under Article 44(1) CRPD
1149
Article 42: Signature
1150
1. Introduction
1150
2. Background and Travaux Préparatoires
1150
3. ‘Signature’ of a Treaty 3.1 Signature by Regional International Organizations
1151 1152
4. Effect of Signature
1153
Mary Pat Treuthart
Ilias Bantekas
Ilias Bantekas
Ilias Bantekas
1132 1133 1133
xxviii
Detailed Contents
5. ‘all States’ 5.1 Indefinite Signature Duration
1154 1155
Article 43: Consent to Be Bound
1156
1. Introduction
1156
2. Background and Travaux Préparatoires
1156
3. Ratification, Acceptance, and Approval
1157
4. Definitive Signature
1158
5. Accession by Any State 5.1 Ratification and Accession by International Organizations
1159 1159
Article 44: Regional Integration Organizations
1162
1. Introduction
1162
2. Background and Travaux Préparatoires
1164
3. Paragraph 1 3.1 ‘Regional Integration Organizations’ and their ‘Competence’
1165 1165
4. Paragraph 2 4.1 References to ‘States Parties’
1168 1168
5. Paragraph 3 5.1 Non-applicability of RIO Instruments to Articles 45 and 47
1169 1169
6. Paragraph 4 6.1 Voting in the Conference of States Parties
1169 1169
Article 45: Entry Into Force
1171
1. Introduction
1171
2. Travaux Préparatoires and Background
1172
3. Paragraph 1 3.1 The Date of Deposit
1172 1174
4. Paragraph 2
1174
Article 46: Reservations
1175
1. Introduction
1175
2. Background and Travaux Préparatoires
1176
3. Paragraph 1 3.1 Reservations Incompatible with the Object and Purpose of the CRPD 3.2 Reservations against Particular Rights 3.3 Reservations Concerning Political or Administrative Organization 3.4 Reservations to the CRPD by International Organizations
1177 1179 1183 1184 1185
4. Paragraph 2
1186
Article 47: Amendments
1188
1. Introduction
1189
2. Travaux Préparatoires
1189
Ilias Bantekas
Jacob Katz Cogan
Ilias Bantekas
Ilias Bantekas
Konstantinos Magliveras
Detailed Contents
xxix
3. General Overview
1191
4. Paragraph 1 4.1 ‘Proposals for amendment will be submitted to the UN Secretary-General . . .’ 4.2 ‘When so notified by States Parties, the Secretary-General shall convene . . .’
1192
5. Paragraph 2
1195
6. Paragraph 3
1196
7. Optional Protocol to the Convention on the Rights of Persons with Disabilities 7.1 Article 15 CRPD Optional Protocol
1197 1197
Article 48: Denunciation
1198
1. Introduction
1198
2. Background and Travaux Préparatoires
1199
3. Denunciation, Un-Signing, and Reservations 3.1 Scope of Denunciation 3.2 Notification to the Depositary 3.3 Legal Effect of Denunciation 3.4 Denunciation by an International Organization
1200 1200 1201 1202 1203
Article 49: Accessible Format
1204
1. Introduction
1204
2. Background and Travaux Préparatoires
1205
3. The Provision
1206
Article 50: Authentic Texts
1214
1. Introduction
1214
2. Background and Travaux Préparatoires
1214
3. Conflicts between Authentic Texts 3.1 Erroneous Text
1215 1216
4. Authentic Texts and Subsequent Translations
1217
5. The CRPD Committee’s Working Languages
1217
Optional Protocol to the Convention on the Rights of Persons with Disabilities
1218
1. Introduction
1219
2. Background and Travaux Préparatoires
1220
3. Article 1 3.1 Paragraph 1 3.1.1 Locus standi and Victim Requirement 3.1.2 On Behalf 3.1.3 Jurisdiction ratione personae 3.2 Paragraph 2
1222 1223 1223 1223 1225 1226
Ilias Bantekas
Eliza Varney
Ilias Bantekas
Tina Stavrinaki
1193 1194
xxx
Detailed Contents
4. Article 2 4.1 ‘Anonymous’ 4.2 ‘Abuse of the Right of Submission of Such Communications or Incompatibility with the Provisions of the Convention’ 4.3 ‘The Same Matter Has Already Been Examined by the Committee or Has Been or Is Being Examined under Another Procedure of International Investigation or Settlement’ 4.4 ‘All Available Domestic Remedies Have Not Been Exhausted. This Shall Not Be the Rule Where the Application of the Remedies is Unreasonably Prolonged or Unlikely to Bring Effective Relief ’ 4.5 ‘It Is Manifestly Ill-Founded or Not Sufficiently Substantiated’ 4.6 ‘The Facts that Are the Subject of the Communication Occurred Prior to the Entry Into Force of the Present Protocol for the State Party Concerned Unless those Facts Continued After that Date’
1226 1227
5. Article 3 5.1 Organization and Working Methods 5.2 Pre-Registration 5.3 Registration 5.4 Transmission to the State Party 5.5 Observations on Admissibility and Merits
1234 1234 1235 1237 1237 1238
6. Article 4 6.1 Working Methods Related to Interim Measures 6.2 Scope of Interim Measures 6.3 Monitoring of Interim Measures Requests
1239 1240 1242 1244
7. Article 5 7.1 Procedure of Examination on the Merits and Adoption of Views 7.2 Legal Status of Views 7.3 Remedies 7.4 Follow-up
1246 1247 1248 1250 1251
8. Articles 6 and 7
1252
9. Article 8
1255
1227 1229 1230 1232 1233
Index1257
Preface The idea behind a commentary on the CRPD was conceived in the summer of 2014. The plan was to produce a comprehensive article-by-article commentary analysis that would appeal to human rights lawyers, disability rights advocates, and all those involved with the rights and lived experiences of persons with disabilities, such as sociologists, educators, policy makers, and many others. This is a tall order because books nowadays are addressed to audiences of a particular expertise, with law books being particularly challenging for non-lawyers. Inter-disciplinarity, however, was not an aim in and of itself. The text of the CRPD, as well as its travaux, deals with several issues that cannot readily be explained by a legal analysis (although it is true that lawyers have a tendency to pull everything within the law!). This includes awareness-raising strategies, the social and medical models of disability, techniques for inclusive education, technical aspects of habilitation and rehabilitation, and many more. We have made a distinct effort to address pertinent issues through both legal and non-legal lenses, where possible, so as to provide a holistic analysis of the CRPD. This is unusual for legal commentaries and we leave it to our readers to assess whether and to what degree we have achieved our aim. A book of this size would not have been possible without the dedication and professionalism of our contributors. Where a single chapter fails to meet our high quality standards or deadlines set by the editors, the entire project risks falling to disarray. This chain-like effect within commentaries make them complex and stressful on the part of the editors and contribute to their ageing process. The four years that we have spent on this project ensures that each chapter has gone through several rounds of comments, extensive discussions, changes, and attention to detail. Ultimately, it was well worth the effort. Although everyone involved in the writing of this book was engaged in their own discreet subject-matter we all, as a team, could see the broader picture, which was to bring together under a single volume existing scholarship, conclusions, best practices, but also conflicts arising from and within this field of law and policy. We are particularly grateful to our families for putting up with us during the course of this long journey. The Bantekas family was enriched with two more children along the way, bringing the total tally to four (we really think we should stop there). Between what seems like endless nappies, sleepless nights, and mastering to write with one hand while cradling a vomiting baby with the other, several chapters were miraculously written and many others edited. I would like to thank them all for their patience, starting with my amazing wife Eleni and my four kids, Stefanos, Zoe (my little ZaZa), Thalia, and Athanasia (Nasia). The Stein Muses—the heroic Penelope, jubilant Sophie, and sublime Ariella—accommodated many editing sessions at unseemly hours with supreme kindness; I acknowledge my deep gratitude even if I cannot adequately thank them. Anastasiou’s partner Domna and son Orfeas, who watched the gestation of the project with patience, understanding, delightful distractions, and critical remarks; I am deeply grateful to them. Finally, we only imagine the relief of all our significant others, when this book, at last, leaves our hands. The three editors wish to thank Merel Alstein and Natasha Flemming from OUP who believed in the project from the outset, commissioning several experts to provide their
xxxii
Preface
comments and expertise at the review stage, which significantly helped us shape its structure and direction. As always, Oxford’s copy-editing has been impeccable, with attention to detail being key to the final production of the book. We also wish to thank Kimberly Marsh who undertook this process from submission to print. Although we have made every possible effort to eliminate the likelihood of mistakes, this is not possible for a book of this size. The editors welcome comments and suggestions from their readership. [Please note: At the time this book was going to press, the UN Enable website migrated. Users are advised to replace ‘www’ with ‘static’ in the URL. In addition the access date for website sources cited in this book is 10 January 2018 unless otherwise stated in the individual footnote.]
Editors’ Biographies Dimitris Anastasiou is Associate Professor of Special Education at Southern Illinois University Carbondale. He holds BS degrees in psychology, sociology, and elementary education, MSc in special education and school psychology, and a PhD in both special education and school psychology. His publications and scholarly interests include philosophical approaches to disability, disability rights, educational and disability policy, comparative special education, co-teaching, cultural issues with implications for educational policy, and educational interventions in reading and writing. Dr Anastasiou is the author of one book, has contributed to three edited books and over twenty articles in peer-reviewed journals including Exceptional Children, Journal of Disability Policy Studies, Journal of Medicine and Philosophy, Exceptionality, International Journal of Educational Development, European Journal of Special Needs Education, Remedial and Special Education, Teaching and Teacher Education, History of Education, Learning Disability Quarterly, and Scientific Studies of Reading. Dr. Anastasiou has served as co-editor of the Journal of International Special Needs Education (JISNE), and as a reviewer for several peer-reviewed journals. He is currently associate editor of the JISNE. Ilias Bantekas FCIArb is Professor of International Law at Hamad bin Khalifa University (a collaboration between Northwestern University, Pritzker School of Law, and Qatar Foundation). He acts as consultant to various inter-governmental organizations, such as UNDP, UN special procedures, Council of Europe, and the EU. He also advises state entities, law firms, and NGOs in most fields of international law, human rights, international development law, and arbitration and is regularly appointed as arbitrator in international disputes. Key books include: International Human Rights Law and Practice (2nd edn, CUP 2016); Introduction to International Arbitration (CUP 2015); Criminological Approaches to International Criminal Law (CUP 2014); International Law (3rd edn, OUP 2017); Sovereign Debt and Human Rights (OUP 2018); The International Criminal Court and Africa (OUP 2017); International Criminal Law (4th edn, Hart 2010). Michael Ashley Stein holds a JD from Harvard Law School and a PhD from Cambridge University. Co-founder and Executive Director of the Harvard Law School Project on Disability and a Visiting Professor at Harvard Law School for over a decade, Stein holds an Extraordinary Professorship at the University of Pretoria’s Centre for Human Rights, and a visiting professorship at the Free University of Amsterdam. Stein previously was Professor (and Cabell Professor) at William & Mary Law School, and has taught at New York University and Stanford law schools. His path-breaking scholarship has been published globally by leading journals and presses, and he is the recipient of fellowships and awards from the American Council of Learned Societies, the National Endowment for the Humanities, and the National Institute on Disability Rehabilitation and Research, among others. An internationally recognized expert on disability law and policy, Stein participated in the drafting of the UN Convention on the Rights of Persons with Disabilities, works with disabled peoples organizations around the world, actively consults with governments on their disability laws and policies, advises a number of
xxxiv
Editors’ Biographies
UN bodies and national human rights institutions, and has brought landmark litigation. Stein has received numerous awards for his work, including the inaugural Morton E. Ruderman Prize for Inclusion, the inaugural Henry Viscardi Achievement Award, and the ABA Paul G. Hearne Award, and was appointed by President Obama to the United States Holocaust Memorial Council.
Contributor Biographies Sarah Arduin is an Adjunct Assistant Professor in the School of Law at Trinity College Dublin. She is a graduate of the University of Paris II Pantheon-Assas (Licence de Droit) and of Trinity College Dublin (LLM). She holds a PhD from the School of Law at TCD on comparative constitutional and regulatory regimes in the context of the right to education of persons with disabilities. Her research interests sit at the intersection of regulation and human rights with an emphasis on the right to education. Her current research project looks at the emergence of gaps between educational policies as expressed by law and the level of compliance with the legal norms in the lived experience of schools. She is also looking at the theory of experimentalist governance in the context of the legal architecture of the UN Convention of the Rights of Persons with Disabilities. Francisco J Bariffi, is Deputy Director of the Human Rights Centre, National University of Mar del Plata, Argentina. He is a Professor and researcher on disability and human rights law. He is the Academic Coordinator of the Iberoamerican Network of Experts on the UN Convention on the Rights of Persons with Disabilities (www.redcdpd.net) (accessed 10 January 2018) and was a Legal Advisor for the Spanish Delegation during the 6th and 8th sessions of Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities. Jerome Bickenbach is a lawyer and health scientist who has worked for the past forty years on disability epidemiology, disability law and policy, and rehabilitation health systems research. He worked at the WHO on the development of the ICF and at Rehabilitation and Disability before moving to Swiss Paraplegic Research to continue research and writing on disability and ageing, assistive technology, and implementation science in the context of the learning health system for rehabilitation. Andrea Broderick is a tenured Assistant Professor in the Department of International and European Law at the Faculty of Law, Maastricht University. Andrea previously completed a Marie Curie fellowship at Maastricht University in the DREAM (Disability Rights Expanding Accessible Markets) network of researchers. Her doctoral thesis on the CRPD’s equality norm was nominated for the Max van der Stoel award (2016) and has been published as a monograph with Intersentia. Andrea has previously worked with the European Disability Forum and was recently appointed as an international expert on disability non-discrimination law for The Promoting Rule of Law in Georgia Activity. Andrea is also a qualified Solicitor at the Law Society of Ireland and worked in professional legal practice for several years. She has published widely in academic journals and books. She has written, and co-written, legal and policy thematic reports for, among others, the European Commission and the Council of Europe. Andrea’s current research interests lie in the areas of international and European disability law, EU equality law, inclusive education and the case law of the European Court of Human Rights. Ena Chadha is an equality rights lawyer and former Vice-Chair with the Human Rights Tribunal of Ontario (2007–15). Ms Chadha holds Advance Alternate Dispute Resolution
xxxvi
Contributor Biographies
Certificates in Negotiations and Mediations, Advanced Litigation, as well as a Certificate in Mental Health Law. In 2007, she completed a Masters research thesis on medical disclosure in human rights litigation. Prior to her appointment, Ms Chadha practiced privately in the areas of human rights and employment law. She served as counsel to the Ontario Human Rights Commission and as Director of Litigation with ARCH Disability Law Centre, a test case clinic specializing in disability and Constitutional rights issues. Ms Chadha is an adjunct Lecturer with Schulich School of Business and teaches in the areas of Negotiations and Power & Politics. She provides professional human rights and conflict resolution training and her speaking engagements have included the National Judicial Institute. She has published extensively on equality rights issues, focusing on gender, disability, race, and harassment. Pok Yin Stephenson Chow received his PhD from the University of Nottingham (UK). He is currently an Assistant Professor at the City University of Hong Kong. He is on the Editorial Advisory Board of the International Journal for Human Rights and Constitutional Studies and is a member of the Society of Legal Scholars and the Asian Society of International Law. As a member of the US bar, he served on the Executive Committee of the American Bar Association, Section of International Law, Hong Kong Chapter in 2015. His research interests concern cultural rights and diversity and has published his works at the Human Rights Law Review and the International & Comparative Law Quarterly. His most recent work includes a book entitled ‘Cultural Rights in International Law and Discourse: Contemporary Challenges and Inter-disciplinary Perspectives’ to be published with Brill in 2018. Jacob Katz Cogan is the Judge Joseph P Kinneary Professor of Law at the University of Cincinnati College of Law. He was previously an attorney-adviser in the Office of the Legal Adviser at the US Department of State. He has published extensively on the hidden assumptions, informal rules, and constitutive decisions and structures that form the operational international legal system, and he is the co-editor of The Oxford Handbook of International Organizations (Oxford University Press, 2016) and Looking to the Future: Essays on International Law in Honor of W. Michael Reisman (Martinus Nijhoff Publishers 2011). Helene Combrinck is an Associate Professor at the Faculty of Law, North- West University, South Africa. She previously worked as a senior researcher at the Centre for Disability Law and Policy, University of the Western Cape, Cape Town, which was preceded by a number of years as the project coordinator of the Gender Project at the (then) Community Law Centre, also at the University of the Western Cape. She has published widely on gender-based violence as well as on disability rights. From 2016 to 2017, she was a member of the task force convened by the International Bar Association’s Human Rights Institute to consider the rights of persons with albinism. Current research interests include the rights of persons with psychosocial disabilities and the development of disability rights in Africa. Jessica Lynn Corsi is a Law Lecturer at Brunel University London. She is primarily a public international law scholar, focusing on human dignity and freedom from violence. She holds a cum laude JD from Harvard Law school, an award winning LLM from Cambridge University, and a PhD in law from Cambridge. Prior to teaching at Brunel she taught for various other law schools including NYU Law. Jessica has worked on
Contributor Biographies
xxxvii
human rights issues in Asia, Africa, Latin America, North America, and Europe, for the UN, government agencies, NGOs, and academic institutions. She contributed to the text of the Cluster Munitions Convention and the World Health Organization’s Framework on Tobacco Control. Kevin Cremin is the Director of Litigation for Disability and Aging Rights at Mobilization for Justice. He is a graduate of the University of Chicago and Yale Law School. After clerking for a federal district court judge and a federal court of appeals judge, Kevin enforced the Fair Housing Act and the Americans with Disabilities Act for the United States Department of Justice. As an American India Foundation Fellow, Kevin conducted a study for the Centre for Advocacy in Mental Health on community-based services for individuals with psychosocial disabilities. He has authored articles that have been published in the Yale Law and Policy Review, Cardozo Law Review, Texas Journal on Civil Liberties & Civil Rights, Journal of Law and Policy, and Frontiers of Law in China. Kevin has been a Lecturer in Law at Columbia Law School since 2009. Federico Ferretti is Senior Lecturer in Law at Brunel University London (UK). His main research interest and teaching is in Privacy & Data Protection law. He is a member of the Financial Services User Group (FSUG) of the European Commission, an expert group which advises the Commission in the preparation of legislation or policy initiatives which affect the users of financial services, provides insight, opinion, and advice concerning the practical implementation of such policies, proactively seeks to identify key financial services issues which affect users of financial services, and liaises with and provide information to financial services user representatives and representative bodies at the European Union and national level. He has led externally funded research projects and written extensively on credit data, consumer over-indebtedness, credit laws, and personal insolvency legislation. A qualified lawyer of the high courts of Italy, he has worked as a practitioner, for the financial services industry, for consumer organizations, and in academia. János Fiala-Butora is a Research Fellow at the Legal Studies Institute of the Hungarian Academy of Sciences and Director of the Central European Program of the Harvard Law School Project on Disability (HPOD). He is also legal advisor to the Budapest-based Disability Rights Center (DRC). He is a graduate of the human rights programme of Central European University (Budapest) LLM 2004, and of Harvard Law School LLM 2010, and SJD 2016. As a human rights lawyer, he has brought landmark litigation before international courts on behalf of persons with disabilities, including the European Court of Human Rights, the European Committee of Social Rights, and the UN Committee on the Rights of Persons with Disabilities. In his research he focuses on international human rights mechanisms, rights of persons with disabilities, ethnic minorities, and refugees. Eilionóir Flynn is a Senior Lecturer at the School of Law and Director of the Centre for Disability Law and Policy, National University of Ireland Galway. Her current research interests include legal capacity, advocacy, access to justice, and the intersectionality of disability, gender, and ageing. In 2014 she became the youngest ever recipient of a European Research Council Starting Grant for the VOICES project, to document the narratives of people with lived experience of legal capacity denial. Internationally, she has supported the Secretariat of the UN Committee on the Rights of Persons with Disabilities, and in particular the working group which prepared a draft General Comment on Article 12 (legal capacity).
xxxviii
Contributor Biographies
Anthony G Giannoumis’ research focuses on technology law, policy, and practice. He is currently researching the implementation of policies aimed at ensuring equal access to technology. His research interests include universal design, international governance, sustainable development, social regulation, standardization, assistive technology, and intellectual property. He is currently an associate professor of universal design at the Department of Computer Science at Oslo and Akershus University College, and an international research fellow at the Burton Blatt Institute at Syracuse University. Kris Gledhill has a law degree from the University of Oxford and an LLM from the University of Virginia. He practiced briefly as an attorney-at-law of the Commonwealth of Virginia, and was then a barrister in London for two decades, appearing in criminal and public law matters: this included various precedent-setting cases in the European Court of Human Rights, the House of Lords, and the Court of Appeal. He also sat as a Tribunal Judge on mental health cases. At the same time, he maintained an academic career, teaching part-time at various institutions. He became a full-time academic after moving to New Zealand in 2006. He is now a Professor at AUT Law School, where his teaching includes international human rights law. In addition to writing books, book chapters, and academic articles in a variety of areas, he is the Editor in Chief of the International Journal of Mental Health and Capacity Law, the General Editor of the New Zealand Criminal Law Review, Series Editor of the Legal Pedagogy Series for Routledge Publishing and the Editor of the Mental Health Law Reports. Michael Gregory is a Clinical Professor of Law at Harvard Law School and a Member of the Faculty at the Harvard Graduate School of Education. He is also Senior Attorney at the Trauma and Learning Policy Initiative (TLPI), a partnership between Harvard Law School and Massachusetts Advocates for Children, the mission of which is to ensure that children traumatized by exposure to violence and other childhood adversities succeed in school. At HLS, he co-teaches the Education Law Clinic, which both represents individual families of traumatized children in the special education system and engages in administrative and legislative advocacy to advance a public policy agenda for whole-school learning environments that are safe, supportive, inclusive, and trauma-sensitive. He is co-author of TLPI’s two landmark publications, Helping Traumatized Children Learn, Volumes 1 and 2, and he also writes in the field of special education law. He holds a Master of Arts in Teaching and began his law career as a Skadden Fellow. Katherine Guernsey is a public international lawyer who has dedicated her career to the field of human rights, with particular focus on disability inclusive development and diplomacy. Much of her work has focused on enhancing the capacity of stakeholders to effectively formulate and implement disability inclusive policies and practices. She was extensively involved in negotiation of the Convention on the Rights of Persons with Disabilities (CRPD), providing counsel to both governmental and non-governmental delegations. She has numerous publications associated with the treaty and international disability law and policy, including several co-authored World Bank publications. From 2010–17, she served as Senior Policy Advisor to the Special Advisor for International Disability Rights at the US Department of State, promoting disability inclusive diplomacy as a priority in US foreign policy. In that capacity, she played a key role in developing and issuing the first ever comprehensive disability inclusive foreign policy guidance for the Department of State.
Contributor Biographies
xxxix
Ayelet Gur is a Lecturer at the School of Social Work at Bar Ilan University. Her interest lies at the intersection of social policy and disability, with emphasis on issues related to the social inclusion and human rights of people with disabilities in light of the Convention on the Rights of Persons with Disabilities. She is currently involved in two major national studies in Israel: an evaluation study on the transition of persons with intellectual and/or developmental disabilities from institutional care facilities to community-based settings, and a households study on the families of children with intellectual disabilities. Aart Hendriks is a health and human rights lawyer, attached to Leiden Law School as professor in health law. In addition, he serves as surrogate judge and member of the Board of Supervisors of the Erasmus Medical Centre in Rotterdam. He regularly serves as consultant for regional and international health and human rights organizations and teaches both nationally and internationally. Yoshikazu Ikehara is a senior attorney at the Tokyo Advocacy Law Office. He is a member of the Committee on Anti-Discrimination Law for Persons with Disabilities under the Japan Federation of Bar Associations. He is a founder of a non-governmental committee on Disability Rights Tribunal in Asia and the Pacific. He is a researcher at the Project Research Institute, Comprehensive Research Organization, Waseda University. He was a member of the Task Force on Anti-Discrimination Law for Persons with Disability under the Governmental Committee of Disability Law and Policy Reform from 2011 to 2013. His main work in English is ‘Creation of a Disability Rights Tribunal for Asia and the Pacific: Its Impact on China?’, authored with Michael L Perlin, New York Law School Legal Studies Research Paper Series 10/11 # 19. Emily Julia Kakoullis (LLB (Kent), LLM (Maastricht), PhD (Bristol)) is a Lecturer in Human Rights Law, at the School of Law and Politics, Cardiff University, with expertise in International Disability Human Rights Law. Her research focuses on the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD); the interaction between the CRPD and domestic cultural contexts, and the participation of persons with disabilities in decision-making. Prior to taking up this role Emily was a Research Fellow at the University of Exeter, an Honorary Research Fellow at the University of Bristol, and completed her PhD at the University of Bristol on the ratification process for the CRPD in Cyprus, which was interdisciplinary and empirical and brought law and social science together (Kakoullis 2015). During her doctoral research, she also worked as a Research Assistant at the University of Bristol on projects on the CRPD. Prior to her return to academia she worked as a Legal Researcher at the Ministry of Justice in the UK, and for a disability non-governmental organization in Cyprus, where she engaged in advocacy work with persons with disabilities. During her LLM she also worked as a Research Assistant at the Institute for Trans-national Legal Research (METRO) at the University of Maastricht. Arlene S Kanter is an internationally acclaimed expert in international and comparative disability law and policy. At Syracuse University, she is the Laura J and L Douglas Meredith Professor of Teaching Excellence, and the Bond, Schoeneck & King Distinguished Professor of Law. Professor Kanter founded and directs the College of Law’s Disability Law and Policy Program, one of the first and most extensive disability law programs in the world. In Fall 2017, she is a visiting scholar at Harvard Law School and in Spring
xl
Contributor Biographies
2018, she is a Lady Davis Fellow at Hebrew University Faculty of Law. In 2010–11, Professor Kanter was named the Distinguished Switzer Fellow by the US Department of Education’s National Disability Rehabilitation Research Institute and in 2009–10, she was selected as a Fulbright Scholar at Tel Aviv University. Professor Kanter participated in the drafting of the UN Convention on the Rights of People with Disabilities and is the co-author of the first law casebook on international and comparative disability law, and the author of numerous articles and book chapters on international human rights and comparative disability law, inclusive education, higher education and disability, and mental health law. Her most recent book: The Development of Disability Rights Under International Law: From Charity to Human (Routledge 2015) traces the development of the United Nations Convention on the Rights of People with Disabilities (CPRD). Professor has been invited to present at hundreds of conferences around the world and at the United Nations General Assembly and the UN Commission on the Status of Women. She consults with governments and disability organizations in countries around the world on implementing the CRPD. Professor Kanter is co-editor of the Critical Disability Series at SU Press, founder and editor of the SSRN Journal on Disability Law, co-founder of the Disability Law Section of the American Association of Law Schools, and co-founder of the Disability Collaborative Research Group of the Law and Society Association. She is a former Commissioner of the American Bar Association’s Commission on Mental and Physical Disability Law. Stavroula Karapapa is Professor of Intellectual Property and Information Law at the School of Law of the University of Reading. She has published widely in the area of intellectual property law and is the author of Private Copying (Routledge 2012) and Copyright and Mass Digitization (Oxford University Press 2013). James M Kauffman (EdD, University of Kansas) is Professor Emeritus of Education at the University of Virginia. He is author, co-author, or co-editor of numerous publications in special education and related fields. Among his most recent co-authored or co-edited works are: Special Education: What It Is and Why We Need It (2nd edn, Routledge 2018), The Scandalous Neglect of Children’s Mental Health: What Schools Can Do (Routledge 2018), Handbook of Special Education (2nd edn, Routledge 2017), Exceptional Learners: An Introduction to Special Education (14th edn, Pearson 2018), Characteristics of Emotional and Behavioral Disorders of Children and Youth (11th edn, Pearson 2018), and Special Education (in Reference Module in Neuroscience and Biobehavioral Psychology, Elsevier 2017). Amanda Keeling is a University Academic Fellow in Disability Law in the School of Law at the University of Leeds. She holds an undergraduate degree in Law, and an MA in Human Rights, following which she worked for several third sector organizations and NGOs in the human rights field. Her interest in the field of disability stems from work as a Research Assistant at the Cambridge Intellectual and Developmental Disability Research Group, where she worked on two projects exploring the implementation of the Mental Capacity Act 2005 Deprivation of Liberty Safeguards. Her PhD thesis explored the potential for the operationalization of article 12 in the context of adult safeguarding practice in England, using empirical methods to explore existing social work practice of support for decision making in the safeguarding context. Her work is now continuing to investigate the interpretation and implementation of the UNCRPD in the
Contributor Biographies
xli
British context, continuing to focus on adult safeguarding, but expanding out beyond article 12 to consider the wider interactions of the provisions and obligations within the Convention. Agnieszka Kitkowska has a multidisciplinary background, holding a Master of Arts in History of Art and Culture from Nicolaus Copernicus University and a Master of Science in Computing from Edinburgh Napier University. She is currently a PhD candidate in Computer Science at Karlstad University. Her professional experience and interests span a variety of disciplines such as human-computer interaction, Usability, user experience, accessibility, and design. Her research focuses on the gap between attitudes and behaviours in privacy related decision-making and incorporates interdisciplinary methods from computer science, social science, and psychology. Lalin Kovudhikulrungsri is a Lecturer at the Faculty of Law, Thammasat University, Thailand. Her main focus has been in air and space law and human rights law. She received her PhD in Law from Leiden University on a dissertation relating to the right to travel by air of persons with disabilities. She also holds a LLB from Thammasat University and a LLM from the Institute of Air and Space Law, Faculty of Law, McGill University, Canada. Molly K Land is Professor of Law and Human Rights at the University of Connecticut School of Law and Human Rights Institute and Associate Director of the University of Connecticut’s Human Rights Institute. Professor Land’s scholarship focuses on the intersection of human rights, science, technology, and innovation. She is the co-author of The World Blind Union Guide to the Marrakesh Treaty: Facilitating Access to Books for Print- Disabled Individuals (OUP 2017). She has also authored several human rights reports, including a report for the World Bank on the role of new technologies in promoting human rights. Professor Land is a member of the Committee on Scientific Freedom and Responsibility with the American Association for the Advancement of Science. Anna Lawson is a Professor of law at the University of Leeds, where she is also director of the University-wide interdisciplinary Centre for Disability Studies and co-ordinator of the Law School’s Disability Law Hub. Her work focuses on disability equality and human rights at national and international levels. She has been a member of the board of the European Union’s Academic Network of Experts on Disability since its inception in 2007 and led its work on accessibility from 2011–14. She will lead the University of Leeds East Asia Disability Forum (U-LEAD) from 2018–21. Anna has acted as an expert advisor for various governmental and inter-governmental bodies, including the Council of Europe in connection with its disability strategy 2017–23 and the UK’s House of Commons’ Women and Equalities Committee in connection with its 2016–17 inquiry into disability and the built environment. She participated in the Ad Hoc Committee set up to draft the CRPD and is a member of a number of disabled people’s organizations— including Disability Rights UK, the National Federation of the Blind, the Royal National Institute of Blind and Partially Sighted People, the Alliance for Inclusive Education and the European Network for Independent Living. Janet Lord is senior research fellow at the Harvard Law School Project on Disability and serves on the board of the US International Council on Disabilities (USICD). An international human rights lawyer, she specializes in the human rights of persons
xlii
Contributor Biographies
with disabilities. Lord participated in all of the negotiations for the Convention on the Rights of Persons with Disabilities (CRPD), serving as legal advisor to Disabled Peoples’ International, as expert to the UN on monitoring, and counsel to several lead governments during the process. She has travelled to more than forty countries to provide technical assistance on a wide range of disability rights and inclusive development projects for the World Bank, UNDP, UNDESA, the Office of the High Commissioner for Human Rights, USAID, and a variety of other organizations. In her capacity as senior fellow at the Harvard Law School Project on Disability, she has published a wide range of scholarly and practitioner-oriented works on human rights law in the context of disability. She teaches law at the University of Maryland Carey School of Law in her native Baltimore and at American University Washington College of Law. Lord holds an LLB and LLM in law from the University of Edinburgh (Scotland), an LLM in international and comparative law from George Washington University Law School, and a BA in History from Kenyon College. Konstantinos D Magliveras, LLM (Exon), DPhil (Oxon) is Professor of international law at the University of the Aegean and is a practicing lawyer in Greece. His research interests include the law of intergovernmental organizations, international criminal law, the law of treaties, transnational migration, and human rights protection. His most recent book (with G J Naldi) is The African Union: History, Institutions and Activities (Wolters Kluwer 2018). Maria Mikhaylova is a research assistant at the Faculty of Technology, Art and Design at Oslo and Akershus University College of Applied Sciences (HiOA). She holds a Master degree from the University of Oslo in the Theory and Practice of Human Rights. She has worked as a legal analyst at Norwegian Helsinki Committee with the Natalia Estemirova Documentation Center and has acted as a case analyst for the Central and Eastern European Initiative for International Criminal Law and Human Rights. Maria holds a Specialist Degree in International Relations from the Russian State University for the Humanities. Stephanie Motz is a research assistant and PhD candidate at the University of Lucerne, Switzerland, where she writes on ‘The Refugee Status of Persons with Disabilities’ and teaches international migration law. She has completed research stays as a Grotius Research Scholar at the University of Michigan and as a Visiting Study Fellow at the Refugee Studies Centre of the University of Oxford. Stephanie also practices as a barrister, specializing in asylum, immigration, and human rights law. She has successfully represented applicants before the European Court of Human Rights, the UN Committee Against Torture, the Federal Supreme Court of Switzerland, and the United Kingdom High Court and Court of Appeal and has appeared in a country guidance case in the United Kingdom and lodged the first case against Switzerland before the CEDAW Committee (pending). Stephanie has taught public law at King’s College London and now teaches at the University of Lucerne and at the Zurich School for Higher Education in Applied Sciences (ZHAW). She has published various articles and book chapters in English and German in the area of both human rights and disability law as well as asylum and immigration law. Stephanie completed her undergraduate degree at King’s College London and her Master’s degree (Bachelor of Civil Law) at the University of Oxford.
Contributor Biographies
xliii
Lawrence M Mute is a Lecturer at the School of Law of the University of Nairobi. Mute worked as a Commissioner with the Kenya National Commission on Human Rights for nine years, in the course of which he was a key member of Kenya’s delegation in the negotiations that resulted in the Convention on the Rights of Persons with Disabilities. Presently, Mute is also the Vice Chairperson of the African Commission on Human and Peoples’ Rights and the Special Rapporteur on Freedom of Expression and Access to Information in Africa. He also serves as a member of the Working Group on Older Persons and People with Disabilities in Africa. Mute has written journal articles and book chapters on constitutionalism, disability rights, equality, and media. Roxanne Mykitiuk is Professor of law at Osgoode Hall Law School where she specializes in disability, health, and family law. She is the Director of the Disability Law Intensive program. From 2013–15, she was Chair of the Senate of York University. Roxanne has been Senior Legal Researcher for the Canadian Royal Commission on New Reproductive Technologies; a Member of the Ontario Advisory Committee on Genetics; a Member of the Ethics Committee of the Society of Obstetricians and Gynaecologists of Canada and the scholar in residence at the Law Commission of Ontario working on the Disability and Law Project. She is currently a member of the Board of Directors of ARCH Disability Law Clinic in Toronto. Roxanne is an active, engaged and collaborative researcher. She is the author/co-author of numerous articles, book chapters, and books investigating the legal, ethical and social implications of reproductive and genetic technologies and the legal construction and regulation of embodiment and disability. Recently her research has begun to create and investigate arts-based methods—digital stories and drama-based narratives—as a means of challenging and re-representing experiences and conceptions of disability and normalcy. Anna Nilsson is a researcher and Lecturer at Lund University, Faculty of Law. She holds a Doctor of Laws in human rights and her doctoral thesis analyses and delineates the permissible scope for compulsory mental health interventions under the CRPD. Before embarking on an academic career, she practiced law in Sweden and abroad. She has several years of professional experience of human rights monitoring from her work as legal advisor to the Swedish Disability Ombudsman and as advisor on disability rights at the Council of Europe’s Commissioner for human rights. She participated in the negotiations before the Ad Hoc Committee (fourth to seventh session), representing the Swedish Disability Ombudsman and conducting advocacy on behalf of the global network of national human rights institutions. Smitha Nizar teaches law at Bangalore, India. She is the author of the book The Contradiction in Disability Law: Selective Abortions and Rights (OUP). This book was the first after the UNCRPD, which questions the unproblematic approach towards disability-selective abortions. She was a member of the working group of the legal consultant to draft a new law for India in line with the CRPD. She has contributed her part to frame the right to life article in the said law. Prior to that, she was a practicing lawyer. She works to bring a change in the long persisting social prejudice in life with disabilities. She dreams for a world where disability is accepted as a general human condition, so that persons with disabilities are treated as equal on par with all others.
xliv
Contributor Biographies
Jehoshaphat Njau has been the Coordinator of the University of Pretoria Disability Rights Project since 2011. In addition, he is an Attorney of the High Court of South Africa and an associate at Rontgen and Rontgen Inc. Mads Pedersen holds a Master of Laws from the University of Copenhagen. He served as an Assistant Attorney at Kammeradvokaten (the legal adviser to the Danish Government) from 2010 to 2013. He was an Attorney at Kammeradvokaten from 2013–14 working on a variety of legal areas, including human rights law. He served as Special Adviser at the department of Equal Treatment at the Danish Institute for Human Rights from 2014 to 2016 working primarily in the fields of human rights and disability. As of October 2016 he is a Clerk at the Supreme Court of Denmark. Facundo Chávez Penillas is the Human Rights and Disability Advisor of the Office of the United Nations High Commissioner for Human Rights, based in Geneva, since 2013. He is a lawyer with graduate studies on business law and human rights law. Before his current position, Facundo worked in the Disability Department at the Ombudsperson Office of the City of Buenos Aires in Argentina and in a corporate law firm. He was member of organizations of persons with disabilities at national, regional and international levels before working for the United Nations. Michael L Perlin is Professor of Law Emeritus at New York Law School (NYLS), founding director of NYLS’s Online Mental Disability Law Program, and founding director of NYLS’s International Mental Disability Law Reform Project in its Justice Action Center. He is also the co-founder of Mental Disability Law and Policy Associates. He has written thirty-one books and nearly 300 articles on all aspects of mental disability law, including a treatise, Mental Disability Law: Civil and Criminal (Lexis-Nexis Press), universally seen as the standard text in the area (co-authored with Prof Heather Ellis Cucolo). His book, International Human Rights and Mental Disability Law: When the Silenced Are Heard was published by Oxford University Press in 2011. Before becoming a professor, Perlin was the Deputy Public Defender in charge of the Mercer County Trial Region in New Jersey, and, for eight years, was the director of the Division of Mental Health Advocacy in the NJ Department of the Public Advocate. He has represented thousands of persons with mental disabilities in individual and class actions at every court level from police court to the US Supreme Court, and has taught and worked with advocacy projects on every continent. He is also co-chair of the Disability Rights Interest Group of the American Society of International Law. Eleni Polymenopoulou is Assistant Professor of Law at Hamad bin Khalifa University (HBKU) School of Law and visiting professor at the University of Grenoble-Alpes. She has published several book chapters and articles in leading peer-reviewed journals of international and international human rights law. Her research focuses on the intersections between culture and the law, as well as the work of human rights courts. Alongside her academic appointment, she has also worked as a practicing lawyer and has collaborated with a number of NGOs, such as the Greek Council for Refugees and the international organization Article19. Arie Rimmerman, is Richard Crossman Professor of Social Welfare and Social Planning and the founder Dean of Social Welfare and Health Sciences the University of Haifa, Israel. He has been a distinguished Professor at the Newhouse School of Public
Contributor Biographies
xlv
Communication, Syracuse University, and lectured also at Harvard, University of Pennsylvania, Washington University, and Charles University, Prague. He has published eleven books and more than 200 peer-reviewed articles and research reports in Israel, Australia, Europe, and the United States. His is the author of series of three recent books by Cambridge University Press: Social Inclusion and People with Disabilities: National and International Perspectives (2013); Family Policy and Disability (2015); and Disability and Community Living Policies (2017). He is the recipient of the Lehman Award (1987), Fulbright Doctoral Student Fellowship (1979), the William Trump Award (1998), the International Award of the American Association on Mental Retardation (1999) and the Burton Blatt Distinguished Leadership Award (2006). Francesco Seatzu read law at the University of Cagliari, receiving a JD (first class with distinction), before completing his studies for a PhD at the University of Nottingham. Currently he is Full Professor of International and European Law at the University of Cagliari, Italy. He authored and edited several books, among them: Natural Resources Grabbing: An International Law Perspective (with A Bonfanti and F Romanin Jacur, The Hague: Martinus Nijhoff 2015); Foreign Investment, International Law and Common Concerns (with T Treves and S Trevisanut, Routledge 2013); Latin American and Caribbean International Institutional Law (with M Odello, TMC Asser Press 2015); Armed Forces and International Jurisdictions (with M Odello, Antwerp, Cambridge: Intersentia 2013); The UN Committee on Economic, Social and Cultural Rights: The Law, Process and Practice (Abingdon: Routledge 2012) (with M Odello), The World Bank Inspection Panel (Turin: Giappichelli 2007), Insurance in Private International Law: A European Perspective (Oxford: Hart 2003), Tradition and Innovation in Private International Law (with L Pereznieto Castro and T Treves, New York: Juris Publishing 2005). Professor Seatzu is the author of several articles in public and private international law published in Italy and foreign countries. Lucy Series is a Lecturer in law and Wellcome Research Fellow at the School of Law and Politics, Cardiff University. Her research focuses on legal capacity, social care, and human rights. She is currently researching the contested relationship between mental capacity law and ‘empowerment’ using a historical and discursive lens. Lucy has worked at the Centre for Disability Law and Policy at NUI Galway, and completed her PhD at Exeter University. Before a career in legal academia, Lucy studied Psychology and Philosophy (BA (Oxon), MSc (Bristol University)) and worked in a range of health and social care settings with adults with autism, intellectual disabilities, and other cognitive impairments. Dimitrios Skempes is a research faculty member in the Swiss Paraplegic Research, the research arm of the Swiss Paraplegics Foundation, and the Department of Health Sciences and Health Policy at the University of Lucerne. As a rehabilitation professional he is particularly interested in what applying a human rights approach means for rehabilitation, and harnessing the opportunities offered by the CRPD to address chronic and entrenched deficiencies in rehabilitation services to maximize their value for health systems and societies at large. His recently completed PhD dissertation focused on the participatory development of an indicator framework to strengthen policy surveillance and accountability for the implementation of CRPD article 26. In the period 2014–15 Dimitrios was a Junior Faculty Scholar with the ‘Human Rights in Patients’ Care’ programme of
xlvi
Contributor Biographies
the Association of Schools of Public Health in the European Region. As a Marie Curie Research Fellow, he studied Disability Policy and Law between 2011 and 2014 at the Universities of Galway, Maastricht, and Leeds. During his graduate studies, Dimitrios also worked at the Disability and Rehabilitation Team of the World Health Organization. There he focused on WHO’s Global strategy and action plan to strengthen rehabilitation, contributing to the development of programmatic tools and projects. He is an active member of the International Society of Physical and Rehabilitation Medicine. Dimitrios holds a Master’s in Public Health from the University of Crete and a Postgraduate Certificate in Health Services Research from University College London. Tina Stavrinaki studied law at the University of Athens and as a State Scholarship Laureate in International Public Law at the Institut des Hautes Etudes Européennes (University Robert Schuman, Strasbourg 3) and the University Panthéon-Assas (Paris 2). Her PhD thesis on the complaint procedures under the United Nations human rights treaties received a special award (Editions Pedone 2016). She worked in the National Commission for Human Rights (NHRI–Greece) and she drafted several reports and papers on a wide range of human rights issues. As an independent expert she participated in a Special Drafting Committee on substantive gender equality and in the Economic and Social Committee of Greece. She coordinated for UNCHR the Racist Violence Recording Network in Greece and she has gained extended experience working with civil society organizations on hate crimes, racism, and discrimination against migrants and refugees, LGBTI persons, persons with disabilities, and religious minorities. Éva Szeli is a Hungarian-American psychologist and lawyer, specializing in the human rights of persons with mental disabilities. As the Budapest-based Director of European Programs for Mental Disability Rights International (MDRI, a non-governmental organization in Washington DC, now known as Disability Rights International, or DRI), Dr Szeli’s work included human rights investigations and advocacy training in Bulgaria, Estonia, Hungary, Kosovo, Latvia, Russia, Serbia, and Ukraine, as well as numerous presentations on mental disability rights for United Nations and European Union bodies. Before joining MDRI, Dr Szeli worked as a staff psychologist in the US Department of Veterans Affairs; served as a clinician and consultant in private practice; and taught courses in psychology and the law at the University of Miami’s Department of Psychology. After leaving MDRI and returning to the United States, she taught distance-learning courses in mental disability law as an Adjunct Professor of Law at New York Law School. She is currently a Senior Lecturer on the psychology faculty of Arizona State University. She co-edited the first textbook on International Human Rights and Mental Disability (with Michael L Perlin et al) and continues to work as an educator and consultant on mental disability rights issues. Mary Pat Treuthart is a Professor of Law at Gonzaga University. She began her law teaching career after serving a judicial clerkship and working at Warren County Legal Services in New Jersey as a staff attorney and the program director where her primary caseload consisted of civil cases including family law, domestic violence, housing, consumer, public entitlements, and civil commitment matters. Professor Treuthart joined the Gonzaga law faculty in 1989 and was a Fulbright Scholar and Lecturer at Marie Curie Sklodowska University in Lublin, Poland (spring 2002) and served as a Legal Specialist for the ABA-CEELI program in Pristina, Kosovo (Fall 2006). She is a faculty advisor to
Contributor Biographies
xlvii
the Gonzaga Journal of International Law and served as a coach to the Jessup Moot Court team. Professor Treuthart is a member of the Pennsylvania bar. She taught previously at Duquesne University School of Law, Nevada School of Law, Golden Gate University School of Law, and University of San Diego Institute of International and Comparative Law (Dublin). She was a consultant for the National Center on Women and Family Law in New York City and a former faculty member at the National Judicial College and the National Council on Family and Juvenile Court Judges in Reno, Nevada. Stefan Trömel is since 2013 Senior Disability Specialist in the International Labour Organization. Before his current position, he was between 2008 and 2013 Coordinator and then Executive Director of the International Disability Alliance (IDA). Between 1999 and 2004 he was Director of the European Disability Forum (EDF). In representation of EDF, he was actively involved in the negotiation process of the UN Convention on the Rights of Persons with Disabilities. Eliza Varney is a Senior Lecturer in Law at Keele University. She completed her LLB at the University of Hull (1999), her LLM in Romania (2001) and her PhD at the University of Hull (2006). Eliza’s research is in disability equality, focusing on access to information and communication technologies and on the implementation of the UN Convention on the Rights of Persons with Disabilities. She is also conducting research on disability equality and Contract Law and on the participation of disabled people’s user-led organizations (DPULOs) to public consultations. Her publications include the monograph Disability and Information Technology (Cambridge University Press 2013), book chapters and articles in Legal Studies, the Northern Ireland Legal Quarterly, Communications Law, Utilities Law Review, and Zeitschrift fur Rechtssoziologie. Penelope Weller is a Professor and Director of the Juris Doctor Program in the Graduate School of Business and Law at RMIT University, Melbourne, Australia. She is an expert in health law, mental health law and consumer rights. Her research is primarily concerned with the application of the Convention on the Rights of Persons with Disabilities. She teaches Administrative Law, Human Rights Law, Jurisprudence, and Innovative Justice. Outside the University, she is a Community Member of the Mental Health Tribunal in Victoria, Australia. She is the author of the monograph New Law and Ethics in Mental Health Advance Directives: The Convention on the Rights of Person with Disabilities and the Right to Choose (Routledge 2013).
Abbreviations ACHPR ACHR ACtHR ACM Trans Comput Educ ADA ADAPT ADRIP Afr J Disability AHC AHRLR AIDS AIR AIS Akron L Rev Am Crim L Rev Am J Phys Med Rehabil Journal Am J Public Health Am U Int’l L Rev AJIL Albany Gov’t L Rev Alb LJ Sci & Tech ANED APA APF
African Commission on Human and Peoples’ Rights American Convention of Human Rights African Court of Human and People’s Rights ACM Transactions on Computing Education Americans with Disabilities Act (USA) Americans with Disabilities for Accessible Public Transportation American Declaration on the Rights of Indigenous Peoples African Journal of Disability Ad Hoc Committee African Human Rights Law Reports Acquired Immune Deficiency Syndrome All India Reports Accessibility Information Schemes Akron Law Review American Criminal Law Review American Journal of Physical Medicine & Rehabilitation
Appl and Prevent Psychol Arch Phys Med Rehabil ASD ASP AT ATMs
American Journal of Public Health American University International Law Review American Journal of International Law Albany Government Law Review Albany Law Journal of Science and Technology Academic Network of European Disability Experts American Psychological Association Asia-Pacific Forum of National Human Rights Institutions Applied & Preventive Psychology Archives of Physical Medicine and Rehabilitation autism spectrum disorder Assembly of Parties Assistive Technology Automatic Teller Machines
Behav Sci and L Berkeley J Int’l Law Berkeley Tech LJ bis Buffalo L Rev BYIL
Behavioral Sciences & the Law Berkeley Journal of International Law Berkeley Technology Law Journal twice (second version) Buffalo Law Review British Yearbook of International Law
l CAL Cal L Rev Can J Hum Rts CAS Case W Res L Rev CAT CAT Ctee CBC CBR CDPA CDPPAT CED CED Ctee CEDAW CERD CESCR CHRA CIDT CIDTP CJEU Clinical L Rev CMLRev CMW CO CoE CONADIS COP COSP CPAPFD CPT CRC CRC Ctee CRDP CRIA CRPD CRPD-OP CSIE CSOs
Abbreviations Canadian Association of Living California Law Review Canadian Journal of Human Rights Court of Arbitration for Sport Case Western Reserve Law Review Convention Against Torture Committee on the Convention Against Torture Canadian Broadcasting Corporation Community Based Rehabilitation Copyright, Designs, and Patents Act China Disabled People’s Performing Art Troupe Convention for the Protection of All Persons from Enforced Disappearances Committee on the Convention on Enforced Disappearances Convention on the Elimination of All Forms of Discrimination against Women Convention on the Elimination of all Forms of Racial Discrimination Committee on Economic, Social and Cultural Rights Canadian Human Rights Act cruel, inhuman or degrading treatment inhuman or degrading treatment or punishment Court of Justice of the European Union Clinical Law Review Common Market Law Review Convention on the Protection of the Rights of All Migrant Workers and Members of their Families Concluding Observations Council of Europe National Register for the Disabled conference of parties Conference of States Parties Convention for the Protection of All Persons from Forced Disappearance Committee on the Prevention of Torture (Council of Europe) Convention on the Rights of the Child Committee on the Rights of the Child Concurrent Retirement and Disability Payments child rights impact assessment Convention on the Rights of Persons with Disabilities The Optional Protocol to the International Convention on the Rights of Persons with Disabilities Centre for Studies on Inclusive Education civil society organizations
Abbreviations CSR Ctee CUD CUP CVIPA
corporate social responsibility Committee Centre for Universal Design Cambridge University Press Copyright (Visually Impaired Persons) Act
DALY DESA Dev Pract DIG DIHR Disabil Health J Disabil Rehabil Disabil Soc Doc DOTCOM DPAC DPI DPOs DRPI DSA Duke J Int’l & Comp L
Disability Adjusted Life Years Department of Economic and Social Affairs Development in Practice Disabled Income Group Danish Institute for Human Rights Disability and Health Journal Disability and Rehabilitation Disability & Society Document Disability Online Tool of the [EU] Commission Disabled People Against Cuts Disabled Peoples’ International Disabled Persons Organizations Disability Rights Promotion International daily subsistence allowance Duke Journal of International and Comparative Law
EC ECCL ECHR ECJ ECOSOC ECSCAP
European Commission European Coalition for Community Living European Convention on Human Rights European Court of Justice Economic and Social Council (UN) Economic Commission for Latin America and the Caribbean (UN) electro convulsive therapy European Court of Human Rights Editor European Disability Forum Edition Editors European Foundation Centre Economic, Social and Cultural Rights Economic and Social Rights Economic and Social Commission for Asia and the Pacific Et alii (and others) Euro Telecom International et sequens (and the following) European Union European Anti-Discrimination Law Review EU Charter of Fundamental Rights
ECT ECtHR ed EDF edn eds EFC ESCR ESR ESCAP et al ETI et seq EU Eur Anti-Disc L Rev EUCFR
li
lii
Abbreviations
Eur Hum Rts L Rev Eur J Health L EWCA EWHC
European Human Rights Law Review European Journal of Health Law England and Wales Court of Appeal England and Wales High Court of Justice
FAO Fordham L Rev FRA Frontiers L China FYROM
Food and Agriculture Organization Fordham Law Review European Union Agency for Fundamental Rights Frontiers of Law in China former Yugoslav Republic of Macedonia
Ga J Int’l and Comp L GAOR GC GDP GDPR German Yearbook of Int’l L Geo J Int’l Aff Geo Wash Int’l L Rev GF Griffith L Rev
Georgia Journal of International & Comparative Law General Assembly Official Records General Comment Gross Domestic Product General Data Protection Regulation German Yearbook of International Law Georgetown Journal of International Affairs George Washington International Law Review Global Fund Griffith Law Review
Harv Hum Rts J Harv J L & Gender HIV HRC HRCtee HRLR HRQ Hum Rts Brief
Harvard Law School Human Rights Journal Harvard Journal of Law & Gender Human Immunodeficiency Virus Human Rights Council Human Rights Committee (UN) Human Rights Law Review Human Rights Quarterly Human Rights Brief
IAAF IACED
International Association of Athletics Federations Inter-American Convention on the Elimination of All Forms of Discrimination Against Persons with Disabilities Inter-American Commission of Human Rights Inter-American Court of Human Rights International Atomic Energy Agency Inter-Agency Support Group (UN) International Civil Aviation Organization International Criminal Court International Covenant on Civil and Political Rights International Convention on the Elimination of All Forms of Racial Discrimination International Covenant on Economic, Social and Cultural Rights
IACommHR IACtHR IAEA IASG ICAO ICC ICCPR ICERD ICESCR
Abbreviations ICESCR-OP ICF ICJ ICLQ ICMW ICON ICRC ICSID ICT(s) ID IDA IDC IDEA IEP IGM IHL IHRL ILM IJDL IJHR IL ILC ILM ILO ILSA IMF Intercultural Hum Rts L Rev Int’l J Children’s Rights Int’l J L & Psychiatry Int J L C Int’l J L & Fam Int’l J Refugee L Int’l Rev Law, Computers & Technology IPC ISO ISPRM ITU ITU-T
liii
Optional Protocol to the International Covenant on Economic, Social and Cultural Rights International Classification of Functioning, Disability and Health International Court of Justice International & Comparative Law Quarterly International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families International Journal of Constitutional Law International Committee of the Red Cross International Centre for Settlement of Investment Disputes information and communication technology(-ies) intellectual disability International Disability Alliance International Disability Caucus Individuals with Disabilities Education Act Individualized Education Program intersex genital mutilations international humanitarian law international human rights law International Legal Materials International Journal of Discrimination and the Law International Journal of Human Rights Independent Living International Law Commission International Legal Materials International Labour Organization International Law Students Association International Monetary Fund Intercultural Human Rights Law Review International Journal of Children’s Rights International Journal of Law and Psychiatry International Journal of Law in Context International Journal of Law and the Family International Journal of Refugee Law International Review of Law, Computers & Technology International Paralympic Committee International Organization for Standardization International Society of Physical and Rehabilitation Medicine International Telecommunication Union Telecommunication Standardization Sector of the International Telecommunications Union
liv JAMA JDF J Air L & Com J Contemp Health L and Pol’y J High Tech L J Hum Rts J Intellectual Disabilities J Intellectual Disability Research JIL JL and Health JL & Pol’y for Info Soc’y J Pediatr Surg J Psychiatry and L J Rehabil Med J Travel Res
Abbreviations Journal of the American Medical Association Japan Disability Forum Journal of Air Law and Commerce Journal of Contemporary Health Journal of High Technology Law Journal of Human Rights Journal of Intellectual Disabilities J Intellectual Disability Research Journal of International Law Journal of Health and Law Journal of Law and Policy for the Information Society Journal of Pediatric Surgery Journal of Psychiatry & Law Journal of Rehabilitation Medicine Journal of Travel Research
Law and Policy Law & Inequality: A Journal of Theory and Practice Law and Psychology Review Lesbian, Gay, Bisexual, Transgender, Queer, and Intersex LGBTQI Lesbian, Gay, Bisexual, Transgender, Queer or Questioning, and Intersex LOI List of Issues LRC Learning in Regular Classrooms LSN Landmine Survivors Network Loy L A Int’l & Comp Law Rev Loyola of Los Angeles International and Comparative Law Review Loyola L Rev Loyola of Los Angeles Law Review L & Pol Law and Ineq Law and Psychol Rev LGBTI
Maine L Rev MCA MDAC MdDS MDGs Md L Rev MDRI Medical L Rev Melb U L Rev MICS Mich St U J Med and L MI Principles MIT Mod L Rev
Maine Law Review Mental Capacity Act 2005 of England and Wales Mental Disability Advocacy Centre Mal de Debarquement Syndrome Millennium Development Goals Maryland Law Review Mental Disability Rights International Medical Law Review Melbourne University Law Review Multiple Indicator Cluster Surveys Michigan State University Journal of Medicine and Law Principles for the Protection of Persons with Mental Illness and for the Improvement of Mental Health Massachusetts Institute of Technology The Modern Law Review
Abbreviations MOLSA MoU MNCs Monash U L Rev MP MVT
Ministry of Labour and Social Affairs memorandum of understanding multinational corporations Monash University Law Review Member of Parliament Marrakesh VIP Treaty
n NACLC
footnote National Agency Check with Local Record and Credit Checks Non-governmental organizations National Human Rights Institutions National Health System National Journal of Comparative Law Northern Kentucky Law Review National Library for the Blind New Law Journal Number Nordic Journal of International Law National Preventive Mechanisms New York Law School New York Law School Journal of Human Rights New York Law School Journal of International and Comparative Law New York Law School Law Review
NGOs NHRIs NHS NJCL N Ky L Rev NLB New LJ No Nordic JIL NPM NYLS NY L Sch J Hum Rts NY L Sch J Int’l and Comp NYL Sch L Rev
lv
OUP
Organization for Economic Cooperation and Development Office of the High Commissioner for Human Rights Official Journal (EU) Official Journal of the European Union (Communications) Official Journal of the European Union (Legislation) UN Office for Legal Affairs Optional Protocol Optional Protocol to the Convention against Torture Optional Protocol to the Convention on the Elimination of Discrimination against Women Optional Protocol to the Convention on the Rights of Persons with Disabilities Oxford University Press
Pac Rim L & Pol’y J para(s) PANTOU PCIJ Penn St L Rev
Pacific Rim Law & Policy Journal paragraph(s) European Accessible Tourism Directory Permanent Court of International Justice Penn State Law Review
OECD OHCHR OJ OJ C OJ L OLA OP OP-CAT OP-CEDAW OP-CRPD
lvi
Abbreviations
PFL PGA Tour Psychiatry, Psychol and L PWD PWDA
Person-First Language, People First Language professional golf tours Psychiatry, Psychology and Law persons with disabilities People with Disability Australia
QALY Q Rev Econ Finance
Quality Adjusted Life Years The Quarterly Review of Economics and Finance
REIOs RENIEC Res Rev Jur UPR RI RNIB RNID RTD
regional economic integration organizations National Identity and Civil Status Registry Resolution Revista Jurídica UPR Rehabilitation International Royal National Institute of Blind People Royal National Institute for the Deaf right to development
Social Accountability South Carolina Law Review Subcommittee on Prevention of Torture Subcommittee on Prevention of Torture Secretariat for the Convention on the Rights of Persons with Disabilities SCSs Second–Chance Schools SDGs Sustainable Development Goals Seton Hall J Dipl & Int’l Rel Seton Hall Journal of Diplomacy and International Relations SLPs Sign Language Peoples SREOPD Standard Rules on the Equalization of Opportunities for Persons with Disabilities (UN) SRP Simplified Reporting Procedure SRV social role valorization Stan J Int’l L Stanford Journal of International Law Stan L Rev Stanford Law Review St John’s L Rev St John’s Law Review StRE UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities SWD students with disabilities Syracuse J Intl L & Com Syracuse Journal of International Law and Commerce SA SC L Rev SCP SCP-OPCAT SCRPD
TFEU TJ T Jefferson L Rev TRIPS
Treaty on the Functioning of the European Union therapeutic jurisprudence Thomas Jefferson Law Review Trade-Related Aspects of Intellectual Property Rights Convention
Abbreviations UAE U Chi L Rev UCLA L Rev U Chi L Rev UDHR UDL U Haw L Rev UK UKSC UKUT U Miami L Rev U Mich J L Reform Utrecht J Int’l & Eur L UN UNCSD UNDESA UNDG UNDP UNESCAP UNESCO UNGA UNHCR UNICEF UNISDR UNRRA UNTS UPIAS UPR US USA U SF L Rev
United Arab Emirates University of Chicago Law Review University of California Los Angeles Law Review University of Chicago Law Review Universal Declaration of Human Rights Universal Design for Learning University of Hawaiʻi Law Review United Kingdom Supreme Court of the United Kingdom United Kingdom Upper Tribunal University of Miami Law Review University of Michigan Journal of Law Reform Utrecht Journal of International and European Law United Nations United Nations Conference on Sustainable Development United Nations Department of Economic and Social Affairs United Nations Development Group United Nations Development Programme United Nations Economic and Social Commission for Asia and the Pacific United Nations Educational, Scientific and Cultural Organization United Nations General Assembly United Nations High Commissioner for Refugees United Nations Children’s Fund United Nations International Strategy for Disaster Reduction United Nations Relief and Rehabilitation Administration United Nations Treaty Series Union of the Physically Impaired Against Segregation universal periodic review United States of America United States of America University of San Francisco Law Review
Vol
Virginia Law Review Vanderbilt Law Review Vienna Convention on the Law of Treaties blind, visually impaired and otherwise print disabled individuals Volume
WASH Wash L Rev
Water Sanitation and Hygiene Washington Law Review
Va L Rev Vand L Rev VCLT VIPs
lvii
lviii
Abbreviations
WBU WCA WFD WG WHO WIPO Wm & Mary L Rev WNSUP WPA WTO WWDA WWII
World Blind Union Work Capability Assessment World Federation of the Deaf Washington Group on Disability Statistics World Health Organization World Intellectual Property Organization William & Mary Law Review World Network of Users and Survivors of Psychiatry World Psychiatric Association World Trade Organization Women with Disabilities Australia Second World War
Yale Hum Rts and Dev LJ Yale J Int’l L
Yale Human Rights & Development Law Journal Yale Journal of International Law
Yale LJ
Yale Law Journal
Table of Treaties and International Instruments 1840 Treaty of Waitangi . . . . . . . . . . . . . . . . . 901 1883 Paris Convention . . . . . . . . . . . . . . . . . . 894 1886 Berne Convention . . . . . . . . . . . . . . . . . 894 Art. 7(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 894n Art. 9 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 894n 1891 Madrid Agreement . . . . . . . . . . . . . . . . 894 1929 Warsaw Convention for the Unification of Certain Rules Relating to International Transportation by Air . . . . . . . . . . . . . . 575n Art. 33 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 575n 1930 ILO Forced Labour Convention No 29 . . . . . . . . . . . . . . . . . 799 Art. 2(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 799 Art. 2(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 799n Art. 25 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 799n 1945 Charter of the United Nations (UN Charter) . . . . . . 1–2, 8–9, 18, 29, 43, 51, 85n, 142, 144, 318n, 956, 959n, 984, 1014, 1062n, 1088, 1098, 1144 Preamble . . . . . . . . . . . . . . . . . . . . . . . . . . . 18n Para. 1 . . . . . . . . . . . . . . . . . . . . . . . . . . 142n Para. 2 . . . . . . . . . . . . . . . . . . . . 142n, 144n Art. 1 . . . . . . . . . . . . . . . . . . . . . . . . 43n, 1088 Art. 1(3) . . . . . . . . . . . . . . . . . . . . . . . . . . . 956n Art. 2(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 1088 Art. 7 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1110n Art. 7(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 1110 Art. 13 . . . . . . . . . . . . . . . . . . . . . 1088n, 1121 Art. 13(1)(b) . . . . . . . . . . . . . . . . . . . . . . 1121n Art. 22 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1110 Art. 33 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1201 Art. 55 . . . . . . . . . . . 142n, 144n, 959n, 1088 Art. 56 . . . . . . . . . . . . . . . . . 142n, 959n, 1088 Art. 57 . . . . . . . . . . . . . . . . . . . . . . . . . 1108–9 Art. 62 . . . . . . . . . . . . . . . . . . . . . 1088n, 1121 Art. 62(2) . . . . . . . . . . . . . . . . . . . . . . . . . 1121n Art. 63 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1108 Art. 71 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1106 Art. 96(2) . . . . . . . . . . . . . . . . . . . . . . 1115–16 Art. 102 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1148 Constitution of the Food and Agriculture Organization Art. II . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1163n Statute of the International Court of Justice Art. 39 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1214
1946 Convention on the Privileges and Immunities of the United Nations Art. VI, s. 22(b) . . . . . . . . . . . . . . . . . . . . 1037n Art. VI, s. 23 . . . . . . . . . . . . . . . . . . . . . . 1036n Art. VII . . . . . . . . . . . . . . . . . . . . . . . . . . 1037n World Health Organization Constitution Preamble . . . . . . . . . . . . . . . . . . . . . . . . . . 741n 1948 Genocide Convention . . . . . . . . . . . . . 1177 Universal Declaration of Human Rights (UDHR) 1948 . . . . 1, 11, 18, 31–2, 50–1, 97, 142, 144, 200, 296, 374, 384–5, 390, 427, 495, 513, 622, 657–8, 694–5, 711n, 780, 802, 806, 808, 812, 823, 832, 836, 875n, 890–1, 911, 1061 Preamble . . . . . . . . . . . . . . . . . . . . . . 50n, 51n Para. 5 . . . . . . . . . . . . . . . . . . . . . . . . . . 144n Art. 1 . . . . . . . . . . . . . . . . . . . . . . . . . 51n, 142 Art. 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 142 Art. 3 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 93 Art. 6 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 349 Art. 7 . . . . . . . . . . . . . . . . . . . . 144, 156n, 348 Art. 8 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 386 Art. 12 . . . . . . . . . . . . . . . . . . . . . . . . . 93, 604 Art. 13 . . . . . . . . . . . . . . . . 273, 513, 781, 911 Art. 15 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 513 Art. 16 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 629 Art. 17 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 374n Art. 19 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 273 Art. 21 . . . . . . . . . . . . . . . . 97n, 144, 835, 850 Art. 22 . . . . . . . . . . . . . . . . . . 812n, 832n, 872 Art. 23 . . . . . . . . . . . . . . . . . . . 802, 812n, 813 Art. 23(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 767 Art. 23(2) . . . . . . . . . . . . . . . . . . . . . . . . . . 144n Art. 23(3) . . . . . . . . . . . . . . . . . . . . 802n, 812n Art. 24 . . . . . . . . . . . . . . . . . 780, 866, 910–11 Art. 25 . . . . . . . . . . . . 711, 812, 813–14, 872 Art. 25(1) . . . . . . . . . . 802, 806n, 808n, 812n, 823n, 832n Art. 25(2) . . . . . . . . . . . . . . . . . . . . . 629, 812n Art. 26 . . . . . . . . . . . . . . 658n, 659, 670, 872 Art. 26(1) . . . . . . . . . . . . . . . . . . . . . 659, 670n Art. 26(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 50n Art. 26(3) . . . . . . . . . . . . . . . . . . . . . . . . . . . 694 Art. 27 . . . . . . . . . . . . . . . . . . . . . . . 872, 875n Art. 27(1) . . . . . . . . . . . . . . 97n, 781, 866, 911 Art. 27(2) . . . . . . . . . . . . . . . . . . . . . . . . . . 890n Art. 29(1) . . . . . . . . . . . . . . . . . . . . . . 31n, 531
lx
Table of Treaties and International Instruments
UNGA Res 217 . . . . . . . . . . . . . . . . . . 18n, 513n UNGA Res 217A (III) . . . . . . . 90n, 658n, 835n 1949 Convention for the Suppression of the Traffic in Persons and for the Exploitation of Prostitution of Others . . . . . . . . . . . . . . . . . . . . . . . 1171n Geneva Conventions of 1949 (Common Articles) . . . . . . . . . . . . . . . 4, 322 Art. 2(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 320n Art. 2(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 320n Art. 3 . . . . . . . . . . . . . . . . . . . . . . . . 320n, 321 Art. 3(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 321n Geneva Convention (I) for the Amelioration of the Condition of the Wounded and Sick in Armed Forces in the Field 1949 Art. 12 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 321n Art. 15 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 321n Geneva Convention (II) for the Amelioration of the Condition of Wounded, Sick and Shipwrecked Members of Armed Forces at Sea 1949 Art. 12 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 321n Art. 18 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 321n Geneva Convention (III) relative to the Treatment of Prisoners of War 1949 . . . . . . . . . . . . . . . . . . . . . . 316 Art. 17 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 321n Art. 30 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 322n Geneva Convention (IV) relative to the Protection of Civilian Persons in Time of War 1949 . . . . . . . . . . . . . . . . . . . 3 Art. 16 . . . . . . . . . . . . . . . . . . . . . . 321n, 322n Art. 17 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 322n Art. 18 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 322n Art. 21 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 322n Art. 32 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 321n 1950 European Convention for the Protection of Human Rights and Fundamental Freedoms . . . . . 79, 91–2, 97, 218, 223, 297, 323, 375, 407, 427, 442, 444, 453, 497, 499–500, 541–2, 610, 621, 836, 1158n, 1185 First Protocol Art. 1 . . . . . . . . . . . . . . . . . 218, 300n, 375n Art. 2 . . . . . . . . . . . . . . . . . . . . . . 676n, 677 Art. 3 . . . . . . 97n, 836n, 848, 849n, 1069n Protocol 12 Art. 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . 657n Art. 1 . . . . . . . . . . . . . . . . . . . . . . . . . 447, 621 Art. 2 . . . . . . . . . . . . . . . . . . . . 298, 312, 324n Art. 3 . . . . . . . . . . . . 324n, 414n, 437, 444–5, 450–1, 453–4, 463–4
Art. 4(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 324n Art. 5 . . . . . . . . . 406n, 407, 423–4, 437, 541 Art. 5(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 541–2 Art. 5(1)(e) . . . . . . . . . . . . . . . . . 423, 438, 541 Art. 5(4) . . . . . . . . . . . . . . . . . . . . . . . . . . 541–2 Art. 5(5) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 541 Art. 6 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 439 Art. 7 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 324n Art. 8 . . . 208n, 223, 297–8, 323n, 437, 439, 452, 497–9, 560, 579, 605, 609–10, 612–13, 615, 618–21, 629, 919n Art. 8(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 619 Art. 8(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 610n Art. 10 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97n Art. 10(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 622 Art. 12 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 629 Art. 14 . . . . . . . . . 73n, 95, 218, 300n, 657n, 676n, 677, 919n Art. 15 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 323 Art. 15(2) . . . . . . . . . . . . . . . . . . . . . . . . . . 324n Art. 32(2)(b) . . . . . . . . . . . . . . . . . . . . . . 1229n UNESCO Agreement on the Importation of Education, Scientific and Cultural Materials (Florence Agreement) Annexes A to E . . . . . . . . . . . . . . . . . . . . . 880n 1951 ILO Equal Remuneration Convention (C100) . . . . . . . . . . . . . . . . 777 Art. 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 777 Refugee Convention . . . . . . . . . . . . . . . 199, 334 Art. 1A(2) . . . . . . . . . . . . . . . . . . . . . . . . . . 334 Art. 39(3) . . . . . . . . . . . . . . . . . . . . . . . . . . 1147 Art. 46 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1148 1952 Optional Protocol 1 to the Convention for the Protection of Human Rights and Fundamental Freedoms Art. 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 374n Social Security (Minimum Standards) Convention 1952 . . . . . . . . . . . . . . . . . . 812 Art. 35 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 812n 1954 Convention relating to the status of Stateless Persons . . . . . . . . . . . 521n 1957 Treaty on the Functioning of the European Union (TFEU) Title II . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 939 Art. 16 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 939 Art. 19 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1168 Art. 114 . . . . . . . . . . . . . . . . . . . . . . 938, 1168 Art. 216 . . . . . . . . . . . . . . . . . . . 1153n, 1160n Art. 216(2) . . . . . . . . . . . . . . . . . . . . . . . . 1160n Art. 218 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1168 Art. 338 . . . . . . . . . . . . . . . . . . . . . . . . . . 936–7
Table of Treaties and International Instruments 1961 Convention on the Reduction of Statelessness . . . . . . . . . . . . . . . . . . . 521n Vienna Convention on Consular Relations 138n 1965 International Convention on the Elimination of All Forms of Racial Discrimination (ICERD) . . . . . 1, 50, 71–4, 121n, 141, 145, 147, 149, 160, 168, 239, 247n, 374, 380, 384, 513, 568, 812, 836n, 982, 1014, 1025, 1124, 1196n, 1219n, 1251n Preamble . . . . . . . . . . . . . . . . . . . . . . . . . . . 51n Paras 1–3 . . . . . . . . . . . . . . . . . . . . . . . . 145n Art. 1 . . . . . . . . . . . . . . . . . . . . . 71n, 74n, 75n Art. 1(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50n Art. 1(4) . . . . . . . . . . . . . . . . . . . . . . . 50n, 145 Art. 2 . . . . . . . . . . . . . . . . . . . . . . . . . 120, 866 Art. 2(d) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 75n Art. 2(1)(d) . . . . . . . . . . . . . . 124, 380n, 921n Art. 2(1)(e) . . . . . . . . . . . . . . . . . . . . . . . . . 160n Art. 2(2) . . . . . . . . . . . . . . . . . . . . . . 50n, 160n Art. 4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 380n Art. 5 . . . . . . . . . . . . . . . . . . . . . . . 145n, 836n Art. 5(vi) . . . . . . . . . . . . . . . . . . . . . . . . . . . 872 Art. 5(a) . . . . . . . . . . . . . . . . . . . . . 157n, 384n Art. 5(d) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97n Art. 5(d)(i) . . . . . . . . . . . . . . . . . . . . . 567, 569 Art. 5(d)(i) . . . . . . . . . . . . . . . . . . . . . . . . . 513n Art. 5(d)(ii) . . . . . . . . . . . . . . . . . . . . . . . . 513n Art. 5(d)(iii) . . . . . . . . . . . . . . . . . . . . . . . . 513n Art. 5(d)(v) . . . . . . . . . . . . . . . . . . . . . . . . 374n Art. 5(e)(i) . . . . . . . . . . . . . . . . . . . . . . . . . . 767 Art. 5(e)(iv) . . . . . . . . . . . . . . . . . . . . . . . . 812n Art. 5(e)(vi) . . . . . . . . . . . . . . . . . . . 866, 893n Art. 5(f ) . . . . . . . . . . . . . . . . . . . 102, 273, 853 Art. 6 . . . . . . . . . . . . . . . . . . . . 50n, 75n, 384n Art. 7 . . . . . . . . . . . . . . 160n, 238, 380n, 568 Art. 8(1) . . . . . . . . . . . . . . . . . . . 1025n, 1028n Art. 8(6) . . . . . . . . . . . . . . . . . . . . . . . . . . 1196n Art. 9 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1046n Art. 9(2) . . . . . . . . . . . . . . . . . . . . 1120n, 1124 Art. 10 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1034n Art. 14(7) . . . . . . . . . . . . . . . . . . . . . . . . . 1227n Art. 14(7)(b) . . . . . . . . . . . . . . . . . . . . . . 1247n 1966 ICSID (International Centre for the Settlement of Investment Disputes) Convention . . . . . . . . . . . . 1202n Art. 71 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1202n International Covenant on Civil and Political Rights (ICCPR) . . . . 1, 17, 41, 48, 50, 95, 97, 103, 109, 114, 142, 163, 200, 241, 290, 296, 323, 348n, 363, 372, 384–5, 390, 406n, 427, 450, 495, 511n, 512–17, 520, 563, 583, 586, 610, 612–14, 619,
lxi
621, 635, 715, 835, 841, 1014, 1018, 1040n, 1045, 1085n, 1099, 1124–5, 1131, 1135, 1185, 1241 Preamble . . . . . . . . . . . . . . . . . . . . . . . . . . . 85n Art. 2 . . . 95n, 108n, 323, 592n, 837n, 1099 Art. 2(1) . . . . . . . . . . . . . . . 49, 583, 621, 657n Art. 2(3) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 386 Art. 3 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 103n Art. 4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 323 Art. 4(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 324n Art. 5(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 613 Art. 5(2) . . . . . . . . . . . . . . . . . . . . . . . 113, 137 Art. 6 . . . . . . . . . . . . . . . . . . . 296n, 323, 324n Art. 6(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 296 Art. 7 . . . . . . 323, 324n, 427–8, 433, 444–5, 447, 450, 453, 463 Art. 8 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 799 Art. 8(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 324n Art. 8(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 324n Art. 8(3)(a) . . . . . . . . . . . . . . . . . . . . . . . . . . 767 Art. 9 . . . . . . . . . . . . . . . . . 93, 323, 422n, 770 Art. 10 . . . . . . . . . . . . 90, 93, 323, 422n, 463 Art. 10(1) . . . . . . . . . . . . . . . . . . 51n, 323, 463 Art. 11 . . . . . . . . . . . . . . . . . . . . . . 324n, 422n Art. 12 . . . . . . . 93, 273, 511n, 512–13, 516, 531, 563, 612, 715 Art. 12(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 513 Art. 12(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 526 Art. 12(3) . . . . . . . . . . . . . . . . . . 512, 514, 525 Art. 14 . . . . . . . . . . . . . . . . . . . . . . . . 388, 440 Art. 14(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 157n Art. 15 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 324n Art. 15(1)(a) . . . . . . . . . . . . . . . . . . . . . . . . 866 Art. 16 . . . . . . . . . . . . . . . . . . . . . . . 324n, 349 Art. 17 . . . . . . . . . . . 93, 604–5, 607, 609–10, 612–15, 619–23, 625 Art. 18 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 324n Art. 19 . . . . . . . . . . . . . 97n, 583–4, 586, 612 Art. 19(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 586n Art. 19(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 273 Art. 21 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 835n Art. 23 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 629 Art. 24 . . . . . . . . . . . . . . . . . . 511n, 513n, 629 Art. 24(3) . . . . . . . . . . . . . . . . . . . . . . . . . . 520n Art. 25 . . . . . . . . 97n, 514n, 835n, 838, 840, 843n, 850, 859 Art. 25(a) . . . . . . . . . . . . . . . . . . . . . . . . . . . 861 Art. 25(c) . . . . . . . . . . . . . . 102, 273, 717, 853 Art. 26 . . . . . . . . . . . . 95n, 144–5, 157n, 159, 165, 323, 348, 657n Art. 27 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 907 Art. 28(2) . . . . . . . . . . . . . . . . . . . . . . . . . 1025n Art. 34 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1034n
lxii
Table of Treaties and International Instruments
Art. 35 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1036n Art. 36 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1035n Art. 38 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1025n Art. 39 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1034n Art. 40 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1046n Art. 40(3) . . . . . . . . . . . . . . . . . . 1106n, 1115n Art. 41(e) . . . . . . . . . . . . . . . . . . . . . . . . . . . 50n Art. 45 . . . . . . . . . . . . . . . . . . . . 1120n, 1121n Art. 50 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 138 Art. 51(3) . . . . . . . . . . . . . . . . . . . . . . . . . 1191n International Covenant on Economic, Social and Cultural Rights (ICESCR) . . . . . . 1, 17, 41, 48, 50, 95, 97, 103, 109, 112, 114, 116, 117n, 119–20, 123–4, 131, 133, 134n, 142, 144–5, 175, 176n, 200, 324, 385, 516, 531, 538, 583, 586, 657–8, 666, 694–5, 711, 712n, 716–18, 738, 802, 806, 811, 816, 832, 868, 898, 910–11, 923, 959n, 1014, 1025, 1040n, 1045, 1085n, 1099, 1210, 1212 Preamble . . . . . . . . . . . . . . . . . . . . . . . . . . . 85n Art. 2 . . . . 95n, 112, 131, 716n, 1099, 1101 Art. 2(1) . . . . . . . . 111–12, 592n, 658, 773n, 811, 956n Art. 2(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 324 Art. 3 . . . . . . . . . . . . . . . . . . . . . . . 103n, 144n Art. 4(3) . . . . . . . . . . . . . . . . . . . . . . . . . . . 324n Art. 5(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 137 Art. 6 . . . . . . . . . . . . . . . . . . . . . . . . . 767, 771 Art. 7 . . . . . . . . . . . . . . . . . . . . 144n, 767, 777 Art. 7(c) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101 Art. 7(d) . . . . . . . . . . . . . . . . . . . . . . . 780, 911 Art. 9 . . . . . . . . . . . . . . . . . . . 804n, 812, 832n Art. 10 . . . . . . . . . . . . . . . . . . . . . . . . 629, 812 Art. 10(2)-(3) . . . . . . . . . . . . . . . . . . . . . . 812n Art. 11 . . . . . . . . . 193n, 324, 804n, 810, 816 Art. 11(1) . . . . . . . . . . . . . . . 802n, 806n, 956n Art. 11(2) . . . . . . . . . . . . . . . . . . . . . . . . . . 956n Art. 12 . . . . . . 324, 706n, 711, 713–14, 717, 720, 726, 741, 742n, 910 Art. 12(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 144n Art. 12(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 711 Art. 13 . . . . . . . . . 90, 144n, 658n, 666n, 670 Art. 13(1) . . . . . . . . . . . . . . . . . 51n, 659, 670n Art. 13(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 50n Art. 13(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 679 Art. 13(2a) . . . . . . . . . . . . . . . . . . . . . . . . . . 679 Art. 13(2b) . . . . . . . . . . . . . . . . . . . . . . . . . . 679 Art. 13(3) . . . . . . . . . . . . . . . . . . . . . . . . . . . 694 Art. 14 . . . . . . . . . . . . . . . . . . . . . . 658n, 666n Art. 15 . . . . . . . . . . . . . . . . . . . . . . . . 97n, 899 Art. 15(1)(a) . . . . . . . . . . . . . . 872, 893n, 898 Art. 15(1)(c) . . . . . . . . . . . . . . . . . . . . . . . 890n
Art. 15(4) . . . . . . . . . . . . . . . . . . . . . . . . . . 956n Art. 16 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1046n Art. 17 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1046n Art. 18 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50n Art. 21 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1120n Art. 23 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 959n Art. 29(3) . . . . . . . . . . . . . . . . . . . . . . . . . 1191n 1969 American Convention on Human Rights . . . . . . . 123n, 291n, 294n, 427, 836, 1201 Art. 1(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 291n Art. 4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 291n Art. 5 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 434 Art. 7 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 422n Art. 11 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 604 Art. 17 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 629 Art. 19 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 629 Art. 21 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 374n Art. 23 . . . . . . . . . . . . . . . . . . . . . . 836n, 849n Art. 24 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 95n Art. 46(1)(c) . . . . . . . . . . . . . . . . . . . . . . 1229n Art. 62(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 1201 Vienna Convention on the Law of Treaties . . . . . . . . . 3n, 7, 36, 89, 1085n, 1157n, 1169, 1175, 1177, 1189, 1199 Art. 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1226n Art. 2(1)(b)(bis) . . . . . . . . . . . . . 1152n, 1173n Art. 2(1)(d) . . . . . . . . . . . . . . . . . . . . . . . . 1175 Arts 10–12 . . . . . . . . . . . . . . . . . . . . . . . . 1152n Art. 10(1)(b) . . . . . . . . . . . . . . . . . 1151, 1158 Art. 12 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1157n Art. 13 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1157n Art. 14(2) . . . . . . . . . . . . . . . . . . . . . . . . . 1157n Art. 15 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1159n Art. 18 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1153n Art. 18(a) . . . . . . . . . . . . . . . . . . . . . . . . . 1151n Art. 18(1)(a) . . . . . . . . . . . . . . . . . . . . . . 1153n Art. 19(c) . . . . . . . . . . . . . . . . . 36n, 524, 1177 Art. 20 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1177n Art. 21 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1178 Art. 23(4) . . . . . . . . . . . . . . . . . . . . . . . . . . 1186 Art. 24(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 1172 Art. 24(4) . . . . . . . . . . . . . . . . . . . . . . . . . . 1172 Art. 25(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 1172 Art. 26 . . . . . . . . . . . . . . . . . . 122, 1088, 1192 Art. 31 . . . . . . . . . . 7, 89n, 189n, 373n, 1215 Art. 31(1) . . . . . . . . . . . . . . . . 3n, 1085n, 1109 Art. 31(2) . . . . . . . . . . . . . . . . . . . . . 7n, 1085n Art. 31(3) . . . . . . . . . . . . . . . . . . . . . . . . . 1085n Art. 31(3)(a) . . . . . . . . . . . . . . . . . . . . . . . . 206 Art. 31(3)(b) . . . . . . . . . . . . . . . . . 206, 1085n Art. 31(4) . . . . . . . . . . . . . . . . . . . . . . . . . 1085n
Table of Treaties and International Instruments Art. 32 . . . . . . . . . . . 373n, 995, 1085n, 1215 Art. 33 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1215n Art. 33(3) . . . . . . . . . . . . . . . . . . . . . . . . . 1214n Art. 33(4) . . . . . . . . . . . . . . . . . . . 1215n, 1216 Art. 39 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1142 Arts 39 et seq . . . . . . . . . . . . . . . . . . . . . . 1189n Art. 40 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1142 Art. 41 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1190n Arts 42–43 . . . . . . . . . . . . . . . . . . . . . . . . 1198n Art. 42(2) . . . . . . . . . . . . . . . . . . . . . . . . . . 1198 Arts 42ff . . . . . . . . . . . . . . . . . . . . . . . . . . . 1198 Art. 43 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1202n Art. 44(1) . . . . . . . . . . . . . . . . . . . . . . . . . 1200n Art. 44(2) . . . . . . . . . . . . . . . . . . . 1199n, 1200 Art. 44(3) . . . . . . . . . . . . . . . . . . . 1199n, 1200 Art. 44(4) . . . . . . . . . . . . . . . . . . . . . . . . . . 1200 Art. 54(a) . . . . . . . . . . . . . . . . . . . . . . . . . . 1202 Art. 54(b) . . . . . . . . . . . . . . . . . . . . . . . 1201–2 Art. 55 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1198n Art. 60 . . . . . . . . . . . . . . . . . . . . . 1199n, 1200 Art. 65 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1202 Art. 65(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 1201 Art. 65(3) . . . . . . . . . . . . . . . . . . . . . . . . . . 1202 Art. 66 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1202 Art. 66(3) . . . . . . . . . . . . . . . . . . . . . . . . . . 1202 Art. 76(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 1145 Art. 76(2) . . . . . . . . . . . . . . . . . . . . . . . . . 1148n Art. 77 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1146 Art. 77(1)(a) . . . . . . . . . . . . . . . . . . . . . . 1147n Art. 77(1)(c) . . . . . . . . . . . . . . . . . . . . . . 1147n Art. 77(1)(d) . . . . . . . . . . . . . . . . . . . . . . 1147n Art. 79 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1216 Art. 79(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 1216 Art. 79(2) . . . . . . . . . . . . . . . . . . 1148n, 1216n 1970 European Agreement Concerning Work of Crews of Vehicles Engaged in International Road Transport 1970 . . . . . . . . . . . . . 1166n Patent Cooperation Treaty . . . . . . . . . . . . . . . 894 1973 Washington Convention on International Trade in Endangered Species of Wild Fauna and Flora (CITES) Art. 21 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1163n 1974 Athens Convention relating to the Carriage of Passengers and Their Luggage by Sea . . . . . . . . . . 575n 1976 Optional Protocol to the ICCPR . . . . . . . . . . . . . . . . . . . . . 1219n Art. 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1223 Art. 3 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1227n Art. 4(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 1095 Art. 5 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1227n
lxiii
1977 Protocol Additional to the Geneva Conventions of 12 August 1949, and relating to the Protection of Victims of International Armed Conflicts (Protocol I) . . . . . . . . 320n, 321n Art. 8(a) . . . . . . . . . . . . . . . . . . . . . . . . . . . 322n Art. 10 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 321n Art. 11(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 322n Art. 11(2) . . . . . . . . . . . . . . . . . . . . . . . . . . 322n Art. 11(3) . . . . . . . . . . . . . . . . . . . . . . . . . . 322n Art. 11(4) . . . . . . . . . . . . . . . . . . . . . . . . . . 322n Art. 11(5) . . . . . . . . . . . . . . . . . . . . . . . . . . 322n Art. 11(6) . . . . . . . . . . . . . . . . . . . . . . . . . . 322n Art. 15(3) . . . . . . . . . . . . . . . . . . . . . . . . . . 321n Art. 35 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 322n Art. 41(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 321n Art. 69 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 322n Art. 70(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 322n Art. 75(2) . . . . . . . . . . . . . . . . . . . . . . . . . . 321n Protocol Additional to the Geneva Conventions of 12 August 1949, and relating to the Protection of Victims of Non-International Armed Conflicts (Protocol II) 1977 . . 320n, 321n Art. 4(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 321n Art. 7 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 321n Art. 9(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 321n Art. 18(2) . . . . . . . . . . . . . . . . . . . . . . . . . . 322n 1978 UNESCO Charter of Physical Education, Physical Activity and Sport . . . . . . . . . . . . . . . . . . . . . . . . . 912 Art. 1(1) . . . . . . . . . . . . . . . . . . . . . . 910n, 912 1979 Bonn Convention on the Conservation of Migratory Species of Wild Animals Art. XV . . . . . . . . . . . . . . . . . . . . . . . . . . . 1163n Convention on the Elimination of All Forms of Discrimination against Women (CEDAW) . . . . . . 1, 50, 71, 73–5, 77n, 85, 95, 103–4, 141, 145, 147, 149, 160, 163, 168, 171n, 173–4, 176, 189, 196, 199, 239, 247, 296, 325, 350, 374, 380, 384, 458, 513, 521, 707n, 812, 817, 823, 832, 836, 841–2, 926n, 959n, 1014, 1024–5, 1035, 1040n, 1124, 1126, 1128, 1151, 1157, 1164, 1172, 1196, 1199, 1215, 1225, 1231, 1236n, 1243, 1250 Preamble . . . . . . . . . . . . . . . . . . . . . . 51n, 85n Art. 1 . . . . . . . . . . . . . . . 50n, 71n, 74n, 145n Art. 2 . . . . . . . . . . . . 103n, 108n, 120, 1118n Art. 2(e) . . . . . . . . . . . . . . . . . 122, 380n, 921n Art. 3 . . . . . . . . . . . . . . 50n, 108n, 160n, 237 Art. 4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 103n
lxiv
Table of Treaties and International Instruments
Art. 4(1) . . . . . . . . . . . . . . . . . . . . . . 101, 145n Art. 5 . . . . . . . . . . . . . . . . . . . . . . . 160n, 380n Art. 5(a) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 238 Art. 6 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 145n Art. 7 . . . . . . . . . . . . . . . . . . 384n, 835n, 838n Art. 8 . . . . . . . . . . . . . . . . . . . 103n, 194, 384n Art. 9 . . . . . . . . . . . . . . . . . . . . . . . 103n, 513n Art. 10 . . . . . . . . . . . . . . . . . . . . . . 103n, 145n Art. 10(c) . . . . . . . . . . . . . . . . . . . . . . . . . . . 145 Art. 11 . . . . . . . . . . . . . . . . . . . . . . 103n, 145n Art. 11(1)(a) . . . . . . . . . . . . . . . . . . . . . . . . 767 Art. 11(1)(e) . . . . . . . . . . . . 812n, 823n, 832n Art. 12 . . . . . . . . . . . . 103n, 145n, 712n, 726 Art. 13 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 103n Art. 13(c) . . . . . . . . . . . . 866, 873, 911n, 912 Art. 14 . . . . . . . . . . . . . . . . . . 103n, 145n, 817 Art. 14(2)(h) . . . . . . . . . . . . . . . . . . . . . . . 817n Art. 15 . . . . . . . . . . . . 103n, 157n, 165, 384n Art. 15(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 145 Art. 15(2) . . . . . . . . . . . . . . . . . . . . . . . 349–50 Art. 15(4) . . . . . . . . . . . . . . . . . 513n, 567, 569 Art. 16 . . . . . . . . . . . . . . . . . . . . . . . 103n, 629 Art. 16(1)(h) . . . . . . . . . . . . . . . . . . . . . . . 374n Art. 17 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 103n Art. 17(1) . . . . . . . . . . . 1025n, 1028n, 1062n Art. 17(8) . . . . . . . . . . . . . . . . . . . . . . . . . 1036n Art. 18 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1061n Art. 1046n . . . . . . . . . . . . . . . . . . . . . . . . 1046n Art. 19(1) . . . . . . . . . . . . . . . . . . . . . . . . . 1034n Art. 20(1) . . . . . . . . . . . . . . . . . . . . . . . . . 1196n Art. 21 . . . . . . . . 1120n, 1121n, 1122n, 1124 Art. 23 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 103n Art. 26 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1189 Art. 29 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1062n Art. 29(1) . . . . . . . . . . . . . . . . . . . . . . . . . 1062n Art. 29(2) . . . . . . . . . . . . . . . . . . . . . . . . . 1062n 1980 Agreement Establishing the Common Fund for Commodities Art. 4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1166n Convention concerning International Carriage by Rail (adopted 9 May 1980, entered into force 1 May 1985) . . . . . . . . . . . . . . . . . . . . . 575n 1982 Convention for the Conservation of Salmon in the North Atlantic Ocean (NASCO) Art. 17 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1163n Convention on Future Multilateral Cooperation in North-East Atlantic Fisheries Art. 20 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 163n Convention on the Law of the Sea (UNCLOS) Annex IX . . . . . . . . . . . . . . . . . . . . . . . . . 1163n
Mexico City Declaration on Cultural Policies . . . . . . . . . . . . . . . . 877 Preamble . . . . . . . . . . . . . . . . . . . . . . . . . . 877n World Programme of Action concerning Disabled Persons . . . . . 1, 15n, 61, 97, 146, 173–4, 200, 238, 737, 866, 879, 893n, 1141 Chapter F, paras 21–30 . . . . . . . . . . . . . . 101n 1985 Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment (CAT) . . . . . 1, 28n, 384, 427, 442–4, 446–8, 450, 453, 459, 461–3, 471, 1014, 1040n, 1045, 1128, 1196, 1219n, 1240–2, 1245–6, 1251, 1253 Preamble . . . . . . . . . . . . . . . . . . . . . . . . . . . 51n Art. 1 . . . . . 427n, 443–4, 447–8, 450n, 454 Art. 2 . . . . . . . . . 427, 428n, 450, 480, 1227n Art. 2(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 480n Art. 2(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 427n Art. 2(3) . . . . . . . . . . . . . . . . . . . . . . . . . . . 427n Art. 3 . . . . . . . . . . . . . . 427n, 428n, 446, 450 Art. 4 . . . . . . . . . . . . . . . . . . . 428n, 450n, 451 Art. 5 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1227n Art. 13 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 384n Art. 14 . . . . . . . . . . . . . . . . . . . 384n, 490, 493 Art. 16 . . . . . . . . . . . . . . . . . . . . . . . . 443, 454 Art. 17(1) . . . . . . . . . . . . . . . . . . . . . . . . . 1025n Art. 17(7) . . . . . . . . . . . . . . . . . . . . . . . . . 1196n Art. 18(5) . . . . . . . . . . . . . . . . . . . . . . . . . 1196n Art. 19 . . . . . . . . . . . . . . . . . . . . 1046n, 1061n Art. 20 . . . . . . . . . . . . . . 1080, 1096n, 1252n Arts 22(1)–(5) . . . . . . . . . . . . . . . . . . . . . . 1242 Art. 22(5)(a) . . . . . . . . . . . . . . . . . . . . . . 1229n Art. 23(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 51n Art. 28(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 51n Art. 24 . . . . . . . . . . . . . . . . . . . . 1120n, 1122n Art. 29(3) . . . . . . . . . . . . . . . . . . . . . . . . . 1191n ILO Convention Concerning Vocational Rehabilitation and Employment (Disabled Persons) No 159 . . . . . 45, 174, 177n, 200, 738, 767 Preamble . . . . . . . . . . . . . . . . . . . . . . . . . . 101n Art. 4 . . . . . . . . . . . . . . . . . . . 101n, 174, 177n Art. 5 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 739n Art. 8 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 739n Art. 9 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 739n 1986 African Charter on Human and People’s Rights (‘Banjul Charter’) . . . . 323, 427, 707n, 712n, 836 Art. 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 95n Art. 11 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 605 Art. 13 . . . . . . . . . . . . . . . . . . . . . . 836n, 849n
Table of Treaties and International Instruments Art. 13(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 849 Art. 14 . . . . . . . . . . . . . . . . . . . . . . 374n, 375n Art. 15 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 767 Art. 16 . . . . . . . . . . . . . . . . . . . . . . 707n, 712n Art. 18 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 629 Art. 18(4) . . . . . . . . . . . . . . . . . . . . . . . . . . . 200 1987 Montreal Protocol on Substances that Deplete the Ozone Layer Art. 9 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 959n Art. 10(a) . . . . . . . . . . . . . . . . . . . . . . . . . . 959n 1988 Additional Protocol to the American Convention on Human Rights in the area of Economic, Social, and Cultural Rights (Protocol of San Salvador) . . . . . . . . 200, 707n, 712n Art. 6 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 767 Art. 10 . . . . . . . . . . . . . . . . . . . . . . 707n, 712n Art. 13(3)(e) . . . . . . . . . . . . . . . . . . . . . . . . 200 Art. 18 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 200 1989 Convention on the Rights of the Child (CRC) . . . . . 1–2, 10, 27, 48, 50, 53, 85, 90, 95, 103–5, 112, 145, 166, 174, 189, 199–200, 202–3, 205–8, 212, 219, 221–2, 224, 226, 227n, 247, 294–7, 325–6, 338, 384, 513, 520, 635, 654, 657–8, 666, 694–5, 707n, 742n, 812, 817, 836, 879, 887, 907, 926n, 957, 959n, 1014, 1024, 1035, 1040n, 1045, 1124, 1150, 1157, 1164, 1172, 1196n, 1199, 1206, 1215 Preamble . . . . . . . . . . . . . . . . . . . . . 51n, 959n Art. 1 . . . . . . . . . . . . . . . . . . . . . 35n, 53n, 205 Art. 2 . . . . . . . . 36n, 85n, 111, 174, 199–200 Art. 2(1) . . . . . . . . . . . . 27, 49, 95n, 145, 199 Art. 2(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 145 Art. 3 . . . . . . . . . . . . . . . . . . . . . 199, 326, 920 Art. 3(1) . . . . . . . . . . . . . . . . . 85n, 221n, 920n Art. 3(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 219 Art. 4 . . . . . . . . . . . . 111–12, 131, 957, 959n Art. 4(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 88 Art. 5 . . . . . . . . . . . . . . . . . . . . . . . . . 104, 224 Art. 6 . . . . . . . . . . . . 85n, 199, 217, 294, 326 Art. 6(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 297 Art. 7 . . . . . . . . . . . . . . . . . . . . . . . . 206, 513n Art. 7(1) . . . . . . . . . . . . . . . . . . . . . . . 326, 528 Art. 7(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 520n Art. 9 . . . . . . . . . . . . . . . . . . . . . . . . . 326, 654 Art. 12 . . . . . . . . . 85n, 105, 199, 384n, 836n Art. 12(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 225 Art. 13 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97n Art. 16 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 93 Art. 17 . . . . . . . . . . . . . . . . . . . . . . . . 256, 907 Art. 17(d) . . . . . . . . . . . . . . . . . . . . . . . . . . 877n
lxv
Art. 19 . . . . . . . . . . . . . . . . 326, 469, 479, 484 Art. 20 . . . . . . . . . . . . . . . . . . . . . . . . 326, 629 Art. 21 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 629 Art. 23 . . . . 27, 36n, 97n, 104n, 105, 145–6, 174, 199–201, 203–4, 206, 218, 738, 831n Art. 23(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 104 Art. 23(2) . . . . . . . . . . . . . . . . . . 131, 201, 659 Art. 23(3) . . . . . . . . . . . . . . 146, 566, 580, 659 Art. 23(4) . . . . . . . . . . . . . . . . . . . . . . . . . . . 146 Art. 24 . . . . . . . . . . . . . . . . . . . . . . 707n, 712n Art. 24(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 817n Art. 24(2)(c) . . . . . . . . . . . . . . . . . . . . . . . 817n Art. 26(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 812n Art. 28 . . . . 90, 101n, 658n, 666n, 670, 694 Art. 28(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 670n Art. 28(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 90n Art. 29 . . . . . . . . . . . . . . . . . . . . . . 658n, 666n Art. 29(c) . . . . . . . . . . . . . . . . . . . . . . . . . . . 873 Art. 30 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 907 Art. 31 . . . . . . . . . . . . . . . . . . . . . . . 101n, 866 Art. 31(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 872 Art. 32 . . . . . . . . . . . . . . . . . . . . . . . . 470, 767 Art. 37(a) . . . . . . . . . . . . . . . . . . . . . . . . . . . 326 Art. 37(b) . . . . . . . . . . . . . . . . . . . . . . . 93, 326 Art. 37(c) . . . . . . . . . . . . . . . . . . . . . . . 51n, 90 Art. 38 . . . . . . . . . . . . . . . . . . . 316, 320n, 325 Art. 39 . . . . . . . . . . . . . . . . . . . . . . . . 325, 490 Art. 38(4) . . . . . . . . . 30, 291–3, 316–17, 319 Art. 40(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 50n Art. 42 . . . . . . . . . . . . . . . . . . . . . . . 238, 1206 Art. 43(2) . . . . . . . . . . . 1025n, 1028n, 1193n Art. 43(11) . . . . . . . . . . . . . . . . . . . . . . . . 1035n Art. 43(12) . . . . . . . . . . . . . . . . . . . . . . . . 1036n Art. 44 . . . . . . . . . . . . . . . . . . . . 1046n, 1061n Art. 44(5) . . . . . . . . . . . . . . . . . . . . . . . . . 1120n Art. 45(a) . . . . . . . . . . . 1107–8, 1110n, 1112 Art. 45(b) . . . . . . . . . . . . . . . . . . . . . . . . . . 1083 Art. 45(d) . . . . . . . . . . . . . . . . . . . . . . . . . . 1124 Art. 45.5 . . . . . . . . . . . . . . . . . . . . . . . . . . 1121n Art. 46 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1151n Art. 47 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1157n Art. 49 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1172n Art. 50 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1190 Art. 51(3) . . . . . . . . . . . . . . . . . . . . . . . . . . 1177 Art. 52 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1199n Art. 53 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1146n Art. 54 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1215n ILO Indigenous and Tribal Peoples Convention, C169 . . . . 24, 835–6 Art. 6 . . . . . . . . . . . . . . . . . . . . . . . . . 24, 836n Art. 7 . . . . . . . . . . . . . . . . . . . . . . . . . 24, 836n Madrid Protocol . . . . . . . . . . . . . . . . . . . . . . . 894
lxvi
Table of Treaties and International Instruments
1990 Cairo Declaration on Human Rights in Islam . . . . . . . . . . . . . . . . . . 1179n Charter on the Rights and Welfare of the Child Art. 13 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 146 International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families (CMW) . . . . . 1, 11, 48, 95, 326, 384, 511n, 513, 812, 836, 1014, 1024, 1040n, 1045 Art. 3 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1227n Art. 4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1227n Art. 11, 52 . . . . . . . . . . . . . . . . . . . . . . . . . . 767 Art. 13 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97n Art. 14 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 93 Arts 16 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 93 Art. 17 . . . . . . . . . . . . . . . . . . . . . . . . . . . 90, 93 Art. 18 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 384n Art. 25 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 767 Art. 26 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 767 Art. 27(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 812n Art. 29 . . . . . . . . . . . . . . . . . . . . . . 511n, 513n Art. 31 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 873 Art. 39 . . . . . . . . . . . . . . . . . . . . . . 511n, 513n, 518n, 567, 569 Art. 39(2) . . . . . . . . . . . . . . . . . . . . . . . . . . 514n Art. 40 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 767 Art. 41 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 836n Art. 43(1)(g) . . . . . . . . . . . . . . . . . . . . . . 872–3 Art. 45(1)(d) . . . . . . . . . . . . . . . . . . . . . . . . 873 Art. 52 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 767 Art. 54 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 767 Art. 72(1) . . . . . . . . . . . . . . . . . . . . . . . . . 1025n Art. 72(1)(b) . . . . . . . . . . . . . . . . . . . . . . 1025n Art. 72(7) . . . . . . . . . . . . . . . . . . . . . . . . . 1035n Art. 72(8) . . . . . . . . . . . . . . . . . . . . . . . . . 1036n Art. 72(9) . . . . . . . . . . . . . . . . . . . . . . . . . 1036n Art. 73 . . . . . . . . . . . . . . . . . . . . 1046n, 1061n Art. 74(4) . . . . . . . . . . . . . . . . . . . . . . . . . 1111n Art. 74(7) . . . . . . . . . . . . . . . . . . . . . . . . . 1120n Art. 75(1) . . . . . . . . . . . . . . . . . . . . . . . . . 1034n Art. 77(2)(a) . . . . . . . . . . . . . . . . . . . . . . 1229n Art. 83 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 384n Art. 85 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1146n Art. 86(1) . . . . . . . . . . . . . . . . . . 1151n, 1157n Art. 86(3) . . . . . . . . . . . . . . . . . . . . . . . . . 1157n Art. 90(3) . . . . . . . . . . . . . . . . . . . . . . . . . 1191n Art. 91(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 1177 Art. 93 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1215n UNESCO World Declaration on Education for All (Jomtien Declaration) . . . . . . . . . . . . . . 660 Art. 3, Para. 5 . . . . . . . . . . . . . . . . . . . . . . 660n
1991 Paris Principles . . . . . . 985, 993–4, 996–7, 1002–5, 1018, 1102, 1112n s. 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 994 Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Healthcare (MI Principles) . . . . . . . 5–6, 61, 146, 342, 437, 449, 727, 831n, 893n Principle 1(4) . . . . . . . . . . . . . . . . . . . . . . . 146n Principle (1)5 . . . . . . . . . . . . . . . . . . . . . . . 146n Principle 3 . . . . . . . . . . . . . . . . . . . . . . . . . 147n Principle 11 . . . . . . . . . . . . . . . . . . . . . . . . 727n Principle 11(6) . . . . . . . . . . . . . . . . . . . . . 727n 1992 Code of Conduct for the International Red Cross and Red Crescent Movement and NGOs in Disaster Relief . . . . . . . . . . . . 315 Convention on Biological Diversity . . . . . . . . . . . . . . . . 1138n, 1139n Art. 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48n Art. 3 . . . . . . . . . . . . . . . . . . . . . . . . . 85n, 89n Art. 34(1) . . . . . . . . . . . . . . . . . . . . . . . . . 1163n EC Treaty (Treaty Establishing the European Community) Art. 13 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1168 Art. 95 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1168 Art. 100a . . . . . . . . . . . . . . . . . . . . . . . . . . . 938 Art. 230(4) . . . . . . . . . . . . . . . . . . . . . . . . . 552n Art. 300 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1168 International Sugar Agreement Art. 41 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1153n Rio Declaration Principle 9 . . . . . . . . . . . . . . . . . . . . . . . . . . 968 UN Framework Convention on Climate Change 1992 . . . . . . . . . . . . . . 957 Art. 3 . . . . . . . . . . . . . . . . . . . . . . . . . 85n, 89n Art. 4(7) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 957 Art. 22(1) . . . . . . . . . . . . . . . . . . . . . . . . . 1163n 1993 Vienna Declaration and Programme of Action . . . . . 12n, 24n, 959n Para. 5 . . . . . . . . . . . . . . . . . . . . . . . . . . 10, 24n Preamble . . . . . . . . . . . . . . . . . . . . . . . . . . 959n Section II Pt. A and C . . . . . . . . . . . . . . . 959n Art. 22 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 147 Art. 29 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 147 Arts 63–65 . . . . . . . . . . . . . . . . . . . . . . . . . . 147 UNGA Declaration on the Elimination of Violence Against Women 1993, UNGA Res 48/104 . . . . . . . . . . 189n 1994 Convention to Combat Desertification in Those Countries Experiencing Serious Drought and/or Desertification, Particularly in Africa Art. 36 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1169n
Table of Treaties and International Instruments Marrakesh Agreement Establishing the World Trade Organization . . . . . . . . . . 1163 Art. XIV(1) . . . . . . . . . . . . . . . . . . . . . . . 1163n Trademark Law Treaty . . . . . . . . . . . . . . . . . . . 894 UN Convention to Combat Desertification . . . . . . . . . . . . . . . . . . . 1138n Art. 3 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 85n UNESCO Salamanca Statement and the Framework for Action on Special Needs Education . . . . . . . 201, 660 Para. 3 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 660n Para. 18 . . . . . . . . . . . . . . . . . . . . . . . . . . . 661n Para. 32 . . . . . . . . . . . . . . . . . . . . . . . . . . . 661n Para. 72 . . . . . . . . . . . . . . . . . . . . . . . . . . . 661n 1995 Beijing Declaration and Platform for Action . . . . . . . . . . . . . . . . . . . . . . . . 176 Copenhagen Declaration and Program of Action of the World Summit for Social Development . . . . . . . . . . . . . 201 TRIPS (Trade-Related Aspects of Intellectual Property Rights) Agreement . . . . . . . . . . . . . . . . . . . 872, 895 Art. 13 . . . . . . . . . . . . . . . . . . . . . . . 872, 875n UNESCO Declaration of Principles of Tolerance . . . . . . . . . . . . . . . . . . . . . . 898n 1996 Agreement for the Establishment of the Indian Ocean Tuna Commission Art. IV(1) . . . . . . . . . . . . . . . . . . . . . . . . . 1167n Panama Commitment to Persons with Disabilities in the American Hemisphere . . . . . . . . . . . . . . 147 Revised European Social Charter (ETS No 163 (1996) . . . . . 97, 707n, 712n, 923, 1223 Preamble . . . . . . . . . . . . . . . . . . . . . . . . . . . 91n Para. 20 . . . . . . . . . . . . . . . . . . . . . . . . . . . 101n Art. 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 767 Art. 11 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 707n Art. 15 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97n Art. 15(3) . . . . . . . . . . . . . . . . . . . . . . . . . . . 912 Art. 20 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101n Art. 26 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 91n Art. 27 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101n WIPO Copyright Treaty . . . . . . . . . . . . . . . . . 895 Art. 8 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 895n Art. 10(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 895 Art. 11 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 895n 1997 Convention on Human Rights and Biomedicine (CETS No 164) Preamble, Art. 1 . . . . . . . . . . . . . . . . . . . . . 91n Art. 5 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 724 Convention on the Prohibition of the Use, stockpiling, production and transfer of antipersonnel mines and on their destruction 1997 . . . . . . . . . . . . . . . . . . 959n
lxvii
Art. 6 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 959n Art. 11(1) . . . . . . . . . . . . . . . . . . . . . . . . . 1137n Kyoto Protocol 1997 Art. 9 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 959n Art. 24(1) . . . . . . . . . . . . . . . . . . . . . . . . . 1163n Joint Convention on the Safety of Spent Fuel Management and on the Safety of Radioactive Waste Management Art. 39(4) . . . . . . . . . . . . . . . . . . . . . . . . . 1165n 1998 Agreement Concerning the Establishing of Global Technical Regulations for Wheeled Vehicles, Equipment and Parts which Can Be Fitted and/or be Used on Wheeled Vehicles Art. 9.3.1 . . . . . . . . . . . . . . . . . . . . . . . . . 1165n Convention on Cooperation for the Protection and Sustainable Use of the River Danube Art. 25 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1167n Rome Statute of the International Criminal Court . . . . . . . . . . . . . 1109, 1136 Art. 5(1)(b) . . . . . . . . . . . . . . . . . . . . . . . . 427n Art. 7(1)(f ) . . . . . . . . . . . . . . . . . . . . . . . . . 427n Art. 7(2)(e) . . . . . . . . . . . . . . . . . . . . . . . . . 427n Art. 13(b) . . . . . . . . . . . . . . . . . . . . . . . . . 1109n Art. 16 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1109n Art. 112 . . . . . . . . . . . . . . . . . . . 1136n, 1143n Art. 120 . . . . . . . . . . . . . . . . . . . 1175n, 1200n Art. 121(6) . . . . . . . . . . . . . . . . . . . . . . . . 1191n Art. 125 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8n Art. 128(3) . . . . . . . . . . . . . . . . . . . . . . . . . 1159 1999 Inter-American Convention on the Elimination of All Forms of Discrimination Against Persons with Disabilities (IACED) 1999 . . . . . 44–5, 66, 146, 200n, 323, 767, 1166n Art. 1(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 66n Art. III(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 767 Art. 4(2)(b) . . . . . . . . . . . . . . . . . . . . . . . . 146n Montreal Convention for the Unification of Certain Rules for International Carriage by Air (adopted 28 May 1999, entered into force 4 November 2003) ICAO Doc 9740 . . . . . . . . . . . . 575n Art. 25 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 575n Art. 27 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 575n Protocol for the Modification of the Convention concerning International Carriage by Rail . . . . . . . 575n Protocol to Amend the 1949 Convention on the Establishment of an Inter-American Tropical Tuna Commission Art. 1(7) . . . . . . . . . . . . . . . . . . . . . . . . . . 1163n
lxviii
Table of Treaties and International Instruments
2000 Charter for Leisure . . . . . . . . . . . . . . . . 911 Dakar Statement and Framework for Action . . . . . . . . . . . . . . . . . . . . . . . . 201 EU Charter of Fundamental Rights (EUCFR) . . . . . . . . . . . . 18n, 91–2, 95, 97, 498–500, 831n, 939 Art. 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 91n Art. 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 500 Art. 3 . . . . . . . . . . . . . . . . . . . . . . . . . 498–500 Art. 6(2)(c) . . . . . . . . . . . . . . . . . . . . . . . . . . 499 Art. 7 . . . . . . . . . . . . . . . . . . . . . 499–500, 939 Art. 8 . . . . . . . . . . . . . . . . . . . . . . . . . 500, 939 Art. 9 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 500 Art. 11 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97n Art. 21 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 95n Art. 21(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 95n Art. 26 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97n Art. 35 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 500 Art. 51 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 499 Art. 52(3) . . . . . . . . . . . . . . . . . . . . . . . . . . . 499 Art. 53 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1152n Optional Protocol to CEDAW . . . 1146n, 1219 Art. 3 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1227n Art. 4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1227n Art. 4(2)(a) . . . . . . . . . . . . . . . . . . . . . . . . 1229n Art. 5 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1239 Art. 8 . . . . . . . . . . . . . . . 1080, 1096n, 1252n Art. 16 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1172n Art. 17 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1177n Art. 19 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1199n Art. 21 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1215n Optional Protocol to the CRC on the Involvement of Children in Armed Conflict . . . . . . . . . . . . . . . . . . . . 326 Patent Law Treaty . . . . . . . . . . . . . . . . . . . . . . 894 UN Convention against Transnational Organised Crime (CATOC) . . . . 493, 959 Preamble (j) . . . . . . . . . . . . . . . . . . . . . . . . . . 8n Art. 6 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 490 Art. 6(3) . . . . . . . . . . . . . . . . . . . . . . 490n, 491 Art. 6(6) . . . . . . . . . . . . . . . . . . . . . . . . . . . 493n Art. 14(2) . . . . . . . . . . . . . . . . . . . . . . . . . . 493n Art. 25(2) . . . . . . . . . . . . . . . . . . . . . . . . . . 493n Art. 30 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 959n 2001 Articles on Responsibility of States for Internationally Wrongful Acts Arts 49ff . . . . . . . . . . . . . . . . . . . . . . . . . . . 1143 International Classification of Functioning, Disability and Health (ICF) . . . . . . . . 60–1 2002 Optional Protocol of the Convention against Torture (OPCAT) . . . . . . 433, 487, 994, 1014, 1024–5, 1033, 1100, 1146n, 1219n Art. 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1014n Art. 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1014n
Art. 5(6) . . . . . . . . . . . . . . . . . . . . . . . . . . 1025n Art. 9 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1033 Art. 11(c) . . . . . . . . . . . . . . . . . . . . . . . . . 1111n Art. 18(4) . . . . . . . . . . . . . . . . . . . . . . . . . . . 994 Art. 28 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1172n Art. 30 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1177n Art. 33 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1199n Art. 33(2) . . . . . . . . . . . . . . . . . . . . . . . . . . 1199 Art. 36 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1215n Optional Protocol to the Convention on the Rights of the Child . . . . . . . . . . . 1219n Art. 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 217 Art. 3 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 217 Art. 5 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 217 Art. 7 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1227n Art. 7(d) . . . . . . . . . . . . . . . . . . . . . . . . . . 1229n Art. 8 . . . . . . . . . . . . . . . . . . . . . . . 217, 1046n Art. 11(1) . . . . . . . . . . . . . . . . . . . . . . . . . 1249n Art. 12 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1046n Art. 13 . . . . . . . . . . . . . . . . . . . . 1096n, 1252n Protocol to the Athens Convention 1974 . . . . . . . . . . . . . . . . . 575n 2003 Convention against Corruption . . . . . . . . . . . . . . . . 959n, 1136 Ch VII . . . . . . . . . . . . . . . . . . . . . . . . . . . 1136n Art. 43 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 959n Art. 59 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 959n Art. 60 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 959n Art. 61 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 959n Art. 63 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1143 Art. 63(1) . . . . . . . . . . . . . . . . . . . . . . . . . 1135n Art. 63(4) . . . . . . . . . . . . . . . . . . . . . . . . . 1137n Art. 64 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1141n Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Women in Africa Art. 2(1)(e) . . . . . . . . . . . . . . . . . . . . . . . . . 160n Art. 2(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 160n Arts 3–24 . . . . . . . . . . . . . . . . . . . . . . . . . . 160n World Health Organization Framework Convention on Tobacco Control Art. 32 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1170n 2004 Arab Charter on Human Rights Art. 31 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 374n UN Convention on Jurisdictional Immunities of States and their Property 2004 Art. 28 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1155n Art. 29 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1156 2005 Convention on Choice of Court Agreements Art. 29 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1169n Convention on the Protection and Promotion of the Diversity of Cultural Expressions . . . . . . . . . . . . . . . 1167 Art. 27(3)(e) . . . . . . . . . . . . . . . . . . . . . . 1167n
Table of Treaties and International Instruments Hyogo Framework for Action (HFA) 2005–2015 . . . . . . . . . . . . . . . . . 975 International Agreement on Olive Oil and Table Olives Art. 4(2) . . . . . . . . . . . . . . . . . . . . . . . . . . 1166n UNESCO Convention on the Protection of Cultural Diversity . . . . . . . . . . . . . . . 899 2006 Convention on the Rights of Persons with Disabilities (CRPD) . . . . . 3–20, 22–33, 35–9, 48–54, 57–62, 64–5, 69–85, 90–124, 128–34, 136–43, 145–7, 154–8, 161, 163, 165–9, 171–5, 177, 181–90, 194–5, 197, 200–1, 203, 205–9, 211–14, 215n, 216n, 217, 221–8, 235–6, 241–2, 245–57, 259–66, 268–9, 271–85, 287–8, 290–1, 293, 295–302, 305–6, 310–11, 314, 316, 322–3, 326–32, 334–8, 340–1, 344, 347–8, 350, 358, 360, 363–4, 368–9, 373–81, 383–7, 390, 392, 393n, 398–9, 401–2, 406n, 407–9, 411, 420, 422–8, 430, 432, 436–7, 440–2, 444–7, 449–50, 454–7, 459–61, 468, 471, 475, 477, 481, 484–5, 495, 497–8, 500–1, 506, 509–10, 518–19, 522, 523n, 524, 526n, 530–1, 536–7, 539–42, 545, 547–50, 554–6, 560–1, 567–77, 579–81, 583, 587, 589, 592–3, 597–603, 605–7, 609, 611, 613, 615–19, 621, 623–6, 629–30, 633, 635–54, 657–8, 661–5, 670n, 671, 673, 675, 680–4, 686, 690–1, 694–701, 703, 706–11, 713–16, 718–21, 723–4, 726–30, 732–3, 735, 737, 740, 742, 748, 750, 754–8, 760–2, 765–7, 769–75, 778–9, 781–2, 784, 786–7, 790–3, 797–8, 802, 804, 806–12, 814–16, 818–25, 827, 830–1, 838, 840–1, 843, 849, 851, 853, 855, 859–60, 862, 865, 871, 873–4, 879–81, 888, 890–1, 895, 897, 900, 902–3, 905–10, 912, 917–20, 923, 925, 927–35, 938, 942–6, 948–9, 952–8, 964–72, 974–7, 979, 981–1003, 1005–11, 1013–14, 1016–18, 1024–5, 1028–9, 1032, 1034–5, 1036n, 1038–55, 1057–9, 1061–8, 1069n, 1070–6, 1077n, 1078, 1080–2, 1084–91, 1093–6, 1098–9, 1101, 1103–4, 1106–16, 1119–31, 1133–4, 1136–44, 1146, 1148, 1150–61, 1163–4, 1166–9, 1170n, 1172–87, 1189, 1191–6, 1198–202, 1204–7, 1209–17, 1219–22, 1224–6, 1228, 1231–7, 1240–4, 1250–3 Preamble . . . . . . . 5, 8–14, 17n, 25, 74, 131, 182, 185, 188, 202, 618, 902n, 1100
lxix
Para. (a) . . . . . . . . . . . . . . . 8, 51n, 91, 156n Para. (b) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 Para. (c) . . . . . . . . . . . . 10, 50n, 102n, 750 Para. (d) . . . . . . . . . . . . . . . . . 11, 173n, 189 Para. (e) . . . . . . . . . . 12–13, 36, 53–4, 58n, 65n, 98n, 99, 262n, 481n, 798, 814n, 824n, 827n, 829n, 831, 968n Para. (f ) . . . . . . . . . . . . . . . . . . . 14, 15n, 61 Para. (g) . . . . . . . . . . . . . . . . . . . . . . 16, 977 Para. (h) . . . . . . . . . . . . . . . 17, 51n, 53, 91, 95, 156n, 380n Para. (i) . . . . . . . . . . . . . . . . . . . . . . 18, 100 Para. (j) . . . . . . . . . . . . . . . . . . . . . . . . . . . 19 Para. (k) . . . . . . . . . . 19, 22, 98n, 99, 827n Para. (l) . . . . . . . . . . . . . . . . . . . . . . . . . . . 20 Para. (m) . . . . . . . 21, 98n, 99, 827n, 930n Para. (n) . . . . . . . . . . . . . . . 22–3, 532, 814n Para. (o) . . . . . . . . . . . . . . . . . . . . . . . . . . . 23 Para. (p) . . . . . . . . . . . 24–5, 95, 151, 185n, 189, 900, 1071n Para. (q) . . . . . . . . . . . . . . . . . 25, 189, 821n Para. (r) . . . . . . . . . . . . . . . . . 27, 104, 481n Para. (s) . . . . . . . . . . . . . . . . . . . . 27–8, 189 Para. (t) . . . . . . . . . . . . . . . . 28, 806n, 826n Para. (u) . . . . . . . . . . . . . . . . . . . 29–30, 318 Para. (v) . . . . . . . . . . . . . . . . . . . . . . . . . . . 31 Para. (w) . . . . . . . . . . . . . . . . . . . . . . . . . . . 31 Para. (x) . . . . . . . . . . . . . . . . . . . . . 32, 806n Para. (y) . . . . . . . . . . 32, 91, 98n, 99, 156n, 380n, 806n, 814n, 827n Art. 1 . . . . . . . . . . 12, 35–43, 47–9, 51n, 52, 55, 57, 59, 61–2, 64, 75n, 85, 91, 95n, 98n, 99, 100n, 110–11, 116n, 156n, 259n, 364, 375n, 411n, 434, 436, 481n, 531, 555, 589, 596, 599, 641, 663n, 798, 814n, 824n, 827n, 843n, 931, 982, 1178, 1204, 1208n, 1209n, 1210n, 1228 Para. 1 . . . . . . . . . . . . . . . . 36, 40, 50, 1225 Para. 2 . . . . . . . . . . . . . . 36, 38, 40, 44, 47, 54–8, 71, 250n, 663n Arts 1–4 . . . . . . . . . . . . . . . . . . . . . 1068, 1072 Arts 1–33 . . . . . . . . . . . . . . . . . . . . 1090, 1215 Art. 2 . . . . . . . . . . . . . 12, 36n, 40, 42, 53, 58, 63–4, 67, 69n, 70–2, 74, 82n, 83, 96, 104n, 106, 117n, 118, 125–6, 151, 160, 164, 276, 354, 363, 378n, 381n, 391n, 436, 542, 555, 557, 582, 587, 591, 594n, 597, 602n, 664n, 677, 682–3, 716–17, 718n, 744, 793n, 796, 805, 846, 853, 860, 880n, 904, 1057, 1207, 1208n Art. 2(a) . . . . . . . . . . . . . . . . . . . . . 819n, 828n Art. 2(c) . . . . . . . . . . . . . . . . . . . . . . . . . . . 828n
lxx
Table of Treaties and International Instruments
Art. 3 . . . . . . . . 18, 22–3, 53, 71, 83n, 84–6, 89–90, 93, 96, 100, 188–9, 204, 268, 363n, 391, 393, 428, 436, 471n, 481n, 509, 555, 560, 569, 571, 581, 596, 720, 757, 758n, 814n, 827n, 900, 906, 965–6, 1007, 1192 Art. 3(a) . . . . . 8, 51n, 90, 156n, 379n, 422n, 532n, 543, 589n, 591, 598n, 711n, 721, 814n, 902n Art. 3(b) . . . . . . . . . . . . . . . 95, 555, 756, 1181 Art. 3(c) . . . . . . . . . . . . . 97, 589n, 638n, 849, 930n, 1007n, 1209n Art. 3(d) . . . 99, 555, 589n, 598n, 602n, 756 Art. 3(e) . . 100, 555, 638n, 756, 849n, 1181 Art. 3(f ) . . . . . . 102, 224, 268n, 589n, 696n, 820n, 1209n Art. 3(g) . . . . . . . . . . . . . . . . . . . . 102–3, 821n Art. 3(h) . . . . . . . . . . . . 104, 217, 602n, 900n Art. 3(p) . . . . . . . . . . . . . . . . . . . . . . . . . . . 185n Art. 4 . . . . . . . . . . . . 71, 79, 106–8, 115, 182, 204, 206, 244, 270, 300, 376n, 391, 393, 423, 555, 568, 573, 589n, 596, 715, 721, 760–1, 784, 802n, 804, 843, 860, 910, 963, 982, 1097–1100, 1192 Art. 4(a) . . . . . . . . . . . . . . . . . . . . . . . . . . . 597n Art. 4(c) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 121 Art. 4(e) . . . . . . . . . . . . . . . . . . . . . . . . 75, 597 Art. 4(f ) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 79n Art. 4(g) . . . . . . . . . . 79n, 567, 573, 581, 585 Art. 4(h) . . . . . . . . . . . . . . . . . . . . . . . 567, 573 Art. 4(1) . . . . . . . . . 116–17, 311n, 760n, 982 Art. 4(1)(a) . . . . . . . . . . . . . . . . . . . . . 119, 161 Art. 4(1)(b) . . . . . . 119–21, 270, 811n, 1131 Art. 4(1)(c) . . . . . . . . . . . . . . . . . . . . . 115, 121 Art. 4(1)(d) . . . . . . . . . . . . 122, 311, 555, 756 Art. 4(1)(e) . . . . . . . . . . . 122, 125, 256, 380n, 381n, 811n Art. 4(1)(f ) . . . . . . . . 125, 127, 129, 278, 285, 422n, 761n, 1100 Art. 4(1)(g) . . . . 127, 129, 276, 285, 594, 1100 Art. 4(1)(h) . . . . . . . . . . 129, 276, 285, 1100 Art. 4(1)(i) . . . . . . . . . . . . . . . . . 129, 285, 844 Art. 4(2) . . . . . 114, 131, 133–4, 211, 244–5, 366n, 592–3, 658, 716, 773, 811n, 929, 995n Art. 4(2)(i) . . . . . . . . . . . . . . . . . . . . . . . . . . 256 Art. 4(3) . . . . 23, 98n, 112, 115, 121, 134–6, 160, 165, 279, 281, 328, 341n, 343, 575n, 603n, 723, 744, 804n, 860, 991, 1007–9, 1023n, 1027, 1045, 1049, 1052, 1099–1100, 1208n, 1209n Art. 4(4) . . . . . . . . . . . . . . . . . . . . . . . 137, 423 Art. 4(5) . . . . . . . . . . . . . . . . . . 138, 989, 1185
Art. 5 . . . . . . . . 95, 97n, 102, 140–4, 146–8, 151–2, 154–8, 160–1, 165, 167, 185, 223n, 236, 248, 270, 298–9, 305, 391, 393, 395, 436, 523, 542, 555, 557, 597–9, 639, 641, 682, 715, 769–70, 794–5, 843, 851, 853–4, 1192 Art. 5(1) . . . . . . . . . 120, 144, 150–1, 157–61, 218, 428, 555, 756 Art. 5(2) . . . . . . . . 117n, 144, 151, 154, 157, 160–3, 429, 557, 1181 Art. 5(3) . . . . . . . 79n, 146, 149, 151, 153–4, 157, 161, 164, 166, 555, 597, 602, 683, 756, 793, 811n Art. 5(4) . . . . . . . . . . . 117n, 145, 152–3, 157, 167–9, 218, 770 Arts 5–30 . . . . . . . . . . . . . . . . . . . . 1068, 1072 Art. 6 . . . . . . 26, 75n, 76n, 104, 122, 171–2, 183–5, 187–8, 195n, 337, 483, 711, 719, 762, 821, 1070, 1093, 1131 Art. 6(1) . . . . . . . . . 184–5, 188, 397–8, 821n Art. 6(2) . . . . . . . . . . . . . . 186–8, 811n, 822n Art. 7 . . . . . 27, 90, 104, 135, 198–9, 202–7, 210–11, 216, 218, 221, 223n, 237n, 337, 390, 711, 762, 902, 904, 919–20 Art. 7(1) . . . . 205, 207, 211–12, 217–18, 906n Art. 7(2) . . . . . . . . . . . . . . . . 219, 221, 919–21 Art. 7(3) . . . . . . . . . . . . . . . . . . . . . . . . . . 224–5 Art. 8 . . . . 8, 32, 62, 91, 100, 117, 158, 188–9, 203, 210, 229, 236, 240–2, 244–8, 250, 254–5, 471n, 542–4, 605, 807, 809–10, 822, 865, 904, 909, 1100, 1204, 1211 Art. 8(a) . . . . . . . . . . . . . . . . . 91n, 117n, 156n Art. 8(b) . . . . . . . . . . . . . . . . . . . . . . . . . . . 117n Art. 8(c) . . . . . . . . . . . . . . . . . . . . . . . . . . . 117n Art. 8(1) . . . . . . . . . . . . 51n, 241–2, 244, 250, 807n, 810n Art. 8(1)(a) . . . . . . . . . . . 32, 100n, 210n, 242, 245–6, 809n, 1211n Art. 8(1)(b) . . . . . . . . . . . . . . . 242, 246, 380n Art. 8(1)(c) . . . . . . . . . . 242, 247, 249, 251–2 Art. 8(2) . . . . . . . . . . . . . . . . . . . . . . . 242, 250 Art. 8(2)(a) . . . . . . . . . . . . . . . . . 250–1, 1211n Art. 8(2)(a)(i) . . . . . . . . . . . . . . . . . . . . . . . . 251 Art. 8(2)(a)(ii) . . . . . . . . . . . . . . . . . . . . . . . 251 Art. 8(2)(a)(iii) . . . . . . . . . . . . . 252, 765, 770 Art. 8(2)(b) . . . . . . . . . . . . . . . . . . . . . . . . . 253 Art. 8(2)(c) . . . . . . . . . . . . . . . . . . . . . . . . . . 254 Art. 8(2)(d) . . . . . . . . . . . . . . . . . . . . 130, 256 Art. 9 . . . . . . . 58n, 79, 94, 99, 126, 129–30, 158, 162, 164, 166, 258–63, 265–6, 268–9, 271–9, 281, 283, 285, 298–9, 380, 383, 395, 398, 555, 557, 562, 567, 569–71, 573, 575, 580, 583,
Table of Treaties and International Instruments 586n, 589–90, 596–600, 711, 717n, 736, 758, 762, 794, 818, 831, 843–4, 853, 906, 909, 911, 965, 971, 1093, 1100, 1131, 1204, 1207–8 Art. 9(d) . . . . . . . . . . . . . . . . . . . . . . . . . . . 905n Art. 9(g) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 127 Art. 9(h) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 127 Art. 9(1) . . . . . . 79, 261, 268–9, 273, 275–6, 278–9, 284, 464, 481n, 487, 557, 611, 811n, 816n, 818n, 831n, 1207n Art. 9(1)(a) . . . . . . . . . . . 274, 277, 696, 831n Art. 9(1)(b) . . . . . . . . . . . . . . . . . . . . 274, 278 Art. 9(2) . . . . . . . . . . 261, 269, 276, 279, 281, 516, 557, 811n Art. 9(2)(a) . . . . . . . . . . . . . . . . . . . 281–2, 999 Art. 9(2)(b) . . . . . . . . . . . . . . 123, 124n, 266, 272, 282–3, 597 Art. 9(2)(c) . . . . . . . . . . . . . . . . . 130, 156, 283 Art. 9(2)(d) . . . . . . . . . . . . 68n, 129, 283, 599 Art. 9(2)(e) . . . . . . . . . . . . . . . . . . . . . 284, 602 Art. 9(2)(f) . . . . 129, 284–5, 557, 820n, 1207n Art. 9(2)(g) . . . . . . . . . . . 284–5, 593n, 820n Art. 9(2)(h) . . . 284–6, 557, 593n, 594, 617n Art. 10 . . . . . . . . . . . . 58n, 217, 287, 289–90, 296–300, 302, 305, 310–11, 341, 363, 398, 481n, 555, 711, 1192 Art. 11 . . . . . . . . 10n, 30, 188, 195, 314–15, 319–21, 322n, 323, 327–31, 334–5, 337, 908, 966, 975 Art. 12 . . . . . . . 19, 23, 36, 58n, 93–4, 101n, 102, 104, 152, 162–3, 165, 199, 206, 222, 223n, 298, 339–44, 346–51, 353–4, 356, 358, 361–2, 364, 369, 371–3, 374n, 383, 387, 389, 392, 399–400, 420, 429, 436, 439–40, 464–5, 485, 488–9, 542–4, 547, 588, 643, 710, 727–8, 730, 843–4, 846–7, 850–1, 854, 857, 860, 1093, 1095, 1126, 1128, 1130, 1217, 1239 Art. 12(1) . . . . . . . . . . 344, 348–9, 518, 588n Art. 12(2) . . . . . 344, 349, 353–4, 361, 481n, 543n, 588n, 848, 859, 1154 Art. 12(3) . . . . . . . . . . 162, 223, 224n, 345–6, 363–4, 376–7, 543n, 588n, 811n, 816n, 847, 857, 859 Art. 12(4) . . . . . . . . 345–6, 358, 367–70, 527, 729–30, 858, 1072, 1075 Art. 12(5) . . . . . 345, 373–6, 379n, 380, 568, 588n, 811n, 815n Art. 13 . . . . . 58n, 162, 190, 223n, 298, 341, 361, 372, 383–4, 387, 390–2, 395–401, 421, 422n, 464–5, 492, 587n, 596, 1100, 1102, 1128
lxxi
Art. 13(1) . . . . . . . . . . . . . 390–1, 393, 398–9, 481n, 816n Art. 13(2) . . . . . . . . . . . . . . . . . . . . . . 256, 400 Art. 14 . . . . 23, 62, 298, 341, 354, 358, 361, 383, 392–3, 398–9, 402–4, 406–10, 415–16, 419–22, 425, 434–6, 465, 505, 555, 710, 724, 730, 900, 1094, 1128 Art. 14(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 481n Art. 14(1)(a) . . . . . . . . . . . . . . . 402, 406, 416 Art. 14(1)(b) . . . . . . 402, 406, 408, 411, 417, 410n, 465, 505 Art. 14(2) . . . . . . 299, 402, 406–7, 418, 422, 424, 464, 481n Art. 15 . . . . . 52, 58n, 188, 195, 211, 298–9, 341, 398, 422n, 426–30, 434–6, 440, 442, 444–5, 449, 453–5, 459–60, 463–5, 471, 480, 482, 489–90, 504, 524, 710, 724, 730, 998, 1182 Art. 15(1) . . . . . 427, 434, 436, 442, 447, 449 Art. 15(2) . . . . . . . . . . . . . 119, 427, 431, 434, 450, 464, 481n Art. 16 . . . . . . . 91, 102n, 158, 183, 188–90, 211, 341, 363, 376, 422n, 429, 468–71, 475, 477–87, 489–93, 505–6, 544, 567, 711, 807, 810, 822, 998 Art. 16(1) . . . . . . . . 119, 190, 469–70, 476–7, 479–84, 486–7, 810n, 822n Art. 16(2) . . . . . . . . . . . 190, 469, 479, 484–7, 807n, 811n, 822n Art. 16(3) . . . . . . . . . . . . 487–90, 492, 998–9 Art. 16(4) . . . . . . . . . . . . . 52, 91n, 93n, 156n, 481, 490, 811n Art. 16(5) . . . . . . . . . . . . . . . 119, 492–3, 822n Art. 17 . . . . . . . . 23, 52–3, 58n, 211, 298–9, 341, 398, 408n, 422n, 429, 434–6, 453–8, 464, 481n, 482, 489, 494–7, 500–2, 504–5, 508–9, 710–11, 724, 757, 802n, 998, 1128 Art. 18 . . . . . . . 58n, 509, 511, 513, 515–18, 523–4, 527, 567, 903, 1128, 1182, 1184 Art. 18(1) . . . . . . . . . . . . . . . . . 481n, 513, 515 Art. 18(1)(a) . . . . . . . . . . . . . . . . . . . . . . 520–1 Art. 18(1)(b) . . . . . . . . . . . . . . . . . . . . . . . . 522 Art. 18(1)(c) . . . . . . . . . . . . . . . . . . . . . . . . 526 Art. 18(1)(d) . . . . . . . . . . . . . . . . . . . 513, 527 Art. 18(2) . . . . . . . . . . . . . . . . . . . . . . 209, 528 Art. 19 . . . . 23, 58n, 94, 99n, 165, 341, 511, 517, 530–44, 547–50, 552, 555–7, 567, 587n, 599, 809, 811n, 814n, 843–4, 849, 901–3, 930, 952, 1097, 1128, 1133–4
lxxii
Table of Treaties and International Instruments
Art. 19(a) . . . . . . . . . . 102n, 481n, 511n, 517, 532, 536, 543, 547, 549, 609 Art. 19(b) . . . . . . . . . 533, 536–7, 552, 554–5, 809n, 816n, 844n Art. 19(c) . . . . . . . . . 533, 536–7, 555–7, 845 Art. 20 . . . . . . 94, 102n, 512, 555, 557, 562, 564–5, 567–74, 968, 1080 Art. 20(a) . . . . . . . . . . . . . . . . . . . . . . . . . 568–9 Art. 20(b) . . . . . . . 127, 565, 568, 572–3, 576 Art. 20(c) . . . . . . . . . . . . . . 130, 256, 568, 580 Art. 20(d) . . . . . . . . . . . . . . . . . . . . . . 568, 582 Art. 20(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 569 Art. 21 . . . . . . . . . . . . 58n, 97n, 128n, 262–3, 276, 395, 399, 481n, 573, 582–7, 589–90, 596, 599–600, 739, 811n, 820n, 843, 845, 904–5, 908, 1128, 1204–5, 1207–8 Art. 21(a) . . . . . 129, 584, 590–2, 593n, 594, 845n, 1207n, 1208n Art. 21(b) . . . . . . . . . 70n, 584, 595–6, 1207n Art. 21(c) . . . . . . . . . . . . . . . . . . 123, 585, 596 Art. 21(d) . . . . . . . . . . . . . . . . . . 585, 599–600 Art. 21(e) . . . . . . . . . . . . . . . . 70n, 585, 601–2 Art. 22 . . . . . . 58n, 604–5, 608–15, 618–19, 621–2, 711, 753 Art. 22(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 608n Art. 22(2) . . . . . . . . . 481n, 614–15, 625, 745 Art. 23 . . . . . . . . 32, 58n, 95, 183, 188, 197, 203–4, 223n, 341, 453, 455, 506, 615, 618, 628–30, 634–40, 642–5, 649–50, 653, 711, 715–16, 807, 814n, 909, 1128 Art. 23(1) . . . . 481n, 631, 635–7, 807n, 811n Art. 23(1)(a) . . . . . . . . . . . . . . . . . . . . . . 640–2 Art. 23(1)(b) . . . . . . . . . . . . . . . . 642–4, 820n Art. 23(1)(c) . . . . . . . . . . . . . . . . . . . 506, 644 Art. 23(2) . . . . . . . . 94, 221, 223, 631, 645–7, 649–50, 807n, 919–20 Art. 23(3) . . . . . 209, 634, 647, 649–52, 807n Art. 23(4) . . . . . . . 631, 634, 647, 649, 651–4 Art. 23(5) . . . . . . . . . . . . . . . . . . . . 634, 654–5 Art. 24 . . . . . . . . 58n, 91, 95, 132, 144, 188, 196–7, 203, 211, 253, 485, 587n, 586, 656–8, 661–72, 674–7, 682–3, 685–8, 690, 692–5, 698, 700, 702, 765, 814n, 818n, 849, 907, 916, 921, 958, 1093, 1132, 1204, 1208, 1210n, 1215n Art. 24(1) . . . . . . . . . . . . . . . 99n, 102n, 481n, 670–4, 685, 920 Art. 24(1)(a) . . . . . . . . . . . . . . . 52, 91n, 156n Art. 24(1)(b) . . . . . . . . . . . . . . . . . . . . . . . . 920 Art. 24(2) . . . . . . . . . . . . 481n, 528, 674, 921 Art. 24(2)(a) . . . . . . . . . . . . . . . . . 674–5, 686
Art. 24(2)(b) . . . . . . . . . . 668–9, 674–5, 678, 703, 816n, 921 Art. 24(2)(c) . . . . . . 674, 682, 685, 703, 921 Art. 24(2)(d) . . . . . . . . 674, 685–6, 698, 921 Art. 24(2)(e) . . . . . . . 663n, 669, 674, 685–7, 689, 698 Art. 24(3) . . . . . . 528, 602, 696, 698–9, 702, 811n, 1208n Art. 24(3)(a) . . . . . . . . . . . . . . . . . . . . . . . . 697 Art. 24(3)(b) . . . . . . . . . . . . . . 70n, 697, 904n Art. 24(3)(c) . . . . . . . . . . . . . . . . . . 663n, 698 Art. 24(4) . . . . . 117, 130, 256, 698, 700, 702 Art. 24(5) . . . . . . . . . . . . . . . . . . . . . 703, 816n Art. 25 . . . . . . . 91, 95, 144, 172n, 183, 188, 191–3, 233n, 289, 298–301, 305, 341, 363, 398, 429, 434, 436, 453, 455, 463, 507, 555, 587n, 596, 706–7, 710–11, 713–14, 716–21, 724, 727–8, 730, 732, 734, 736–7, 745, 749–52, 754–6, 758, 760, 762, 808, 811n, 814n, 818, 821n, 822, 900, 910, 968, 1100, 1102, 1128, 1183 Art. 25(a) . . . 191n, 289n, 301, 719, 723, 1184 Art. 25(b) . . . . . . . . . 209, 714n, 722–3, 822n Art. 25(c) . . . . . . . . . . . . . . . . . . . . . 102n, 723 Art. 25(d) . . . . . 52, 91n, 93n, 117, 123, 130, 156n, 256, 436, 710–11, 721, 724, 730 Art. 25(e) . . . . . . . . . . . . . . . . . . . . . . . . . . . 731 Art. 25(f ) . . . . . . . . . . . . . 732–3, 752n, 808n Art. 26 . . . . . 94, 102n, 127, 233n, 298, 398, 542, 555, 567, 573, 711, 733–7, 741, 744–6, 749–52, 754–6, 758, 760, 762, 765, 770, 804, 849, 968 Art. 26(1) . . . . . . 99n, 735n, 745, 750–1, 753 Art. 26(1)(a) . . . . . . . . . . . . . . . 747, 750, 756 Art. 26(1)(b) . . . . . . . . . . . . . . . 750, 757, 760 Art. 26(2) . . . . . . . . . . . . . . . . . . . . . . 130, 760 Art. 26(3) . . . . . . . . . . . . . . . . . . . . . . 373, 761 Art. 27 . . . . . . 58n, 95, 99, 144, 188, 196–7, 481n, 587n, 745, 764–9, 772–3, 775, 779, 784, 789, 791–4, 797–9, 804, 818n, 1097, 1133–4 Art. 27(1) . . . . . . . 99n, 102n, 119, 771, 811n Art. 27(1)(a) . . . . . . . . . . . . . 768–70, 772–3, 785, 789, 796 Art. 27(1)(b) . . . . . . 76n, 769, 772, 777, 781, 789, 911 Art. 27(1)(c) . . . . . . . . . . . . . . . . . . . 771, 783 Art. 27(1)(d) . . . . . . . . . . . . 256, 784–6, 821n Art. 27(1)(e) . . . . . . . . . . . . . . . . . . . 99n, 785 Art. 27(1)(f ) . . . . . . . . . . . . . . . . . . . 99n, 788 Art. 27(1)(g) . . . . . . . . . . . . . . . 99n, 122, 789 Art. 27(1)(h) . . . . . 99n, 123, 769, 790, 804n
Table of Treaties and International Instruments Art. 27(1)(i) . . . . . . . . . . . . . . . . . . . . 770, 793 Art. 27(1)(j) . . . . . . . . . . . . . . . . 99n, 789, 798 Art. 27(1)(k) . . . . . . 99n, 772, 785, 789, 798 Art. 27(2) . . . . . . . . . . . . . . . . . . . . . . 770, 799 Art. 28 . . . . . . . . . . . . 53, 188, 193, 543, 555, 801–3, 805–7, 809–11, 815–18, 821, 827, 903–4, 1097, 1133–4 Art. 28(1) . . . . . . . . . 805, 810–12, 816n, 828 Art. 28(2) . . . . . . . . . . 808, 811–12, 814, 818 Art. 28(2)(a) . . . . 815, 816n, 820, 821n, 828 Art. 28(2)(b) . . . . . . . . . . . . . . . 803, 820, 832 Art. 28(2)(c) . 803, 820, 821n, 823, 825, 828 Art. 28(2)(d) . . . . . . . . . . . . . . . . . . . 122, 830 Art. 28(2)(e) . . . . . . . . 772, 816n, 821n, 832 Art. 29 . . . . . . . 23, 58n, 97n, 152, 341, 399, 481n, 543, 587n, 834–6, 838, 842–6, 848–51, 860, 904, 930, 958, 1008, 1071n, 1076n, 1095, 1128, 1204, 1209 Art. 29(a) . . . . . . . . . 842, 849–50, 859, 861n, 1068, 1073 Art. 29(a)(i) . . . . 68n, 842, 850–1, 853, 861n Art. 29(a)(ii) . . . . . . . . . . . . . . 573, 842, 851, 854–5, 86hun1n Art. 29(a)(iii) . . . . . . . . . . . . . . . . . . . . . . 857–8 Art. 29(b) . . . . . . . . . . . . 836n, 860–1, 1209n Art. 29(b)(i) . . . . . . . . . . . . . . . . . . . . . . . . . 862 Art. 29(b)(ii) . . . . . . . . . . . . . . . . . . . . . . . . 862 Art. 30 . . . . . . . . 58n, 97n, 128n, 277, 481n, 587n, 818, 849, 863–9, 871–3, 880, 881n, 889, 893–5, 897, 899, 908–9, 911, 1181, 1209n Art. 30(1) . . . . . . . . . 811n, 866, 872–5, 902n Art. 30(1)(a) . . . . . . . . . . . 821n, 879–80, 882 Art. 30(1)(b) . . . . . . . . . . . . . 600, 879, 882–3 Art. 30(1)(c) . . . . . . . . . . . . . . 821n, 879, 883 Art. 30(2) . . . . . . . . . . . . . . 811n, 865–6, 871, 873–4, 884–6 Art. 30(3) . . . . . . . . . . . 128, 277, 617n, 811n, 865, 888, 890–1, 897 Art. 30(4) . . . . . . . 69n, 70n, 602, 885n, 897, 899–903, 905, 907–8 Art. 30(5) . . . . . . . . . 781, 811n, 818n, 870–1, 909–13, 918–21 Art. 30(5)(a) . . . . . . . . . . . . . . . . . . . 913, 916 Art. 30(5)(b) . . . . . . . . . . . . . . . . . . . . 915–16 Art. 30(5)(c) . . . . . . . . . . . . . . . . 913, 916–17 Art. 30(5)(d) . . . . . . . . . . . . . . . 816n, 919–21 Art. 30(5)(e) . . . . . . . . . . . . 821n, 912, 921–2 Art. 30(5)(3) . . . . . . . . . . . . . . . . . . . . . . . . 865 Art. 31 . . . . 188, 195–6, 207, 270, 615, 754, 880n, 924–5, 928–35, 944, 949, 953–4, 1000, 1068, 1072, 1085, 1098, 1100, 1102
lxxiii
Art. 31(1) . . . . . . . 754n, 929, 931, 948, 1000 Art. 31(1)(a) . . . . . . . 614, 790n, 935–6, 938 Art. 31(1)(b) . . . . . . . . . . . . . . . . . . . 936, 944 Art. 31(2) . . . . . . . . . . . . . . . . . . 929, 944, 948 Art. 31(3) . . . . . . . . . . . . . . . . . . . . . . 929, 949 Art. 32 . . . . . . . . 20, 34, 128, 568, 573, 925, 933, 955–6, 958, 963, 965–8, 973–6, 1068, 1072, 1089n, 1098, 1101, 1164 Art. 32(1) . . . . . . . . . . . . . . . . . . . . 601, 963–4 Art. 32(1)(a) . . . . . . . . . . . . . . . . . . . . . . 965–6 Art. 32(1)(b) . . . . . . . . . . . . . . . 256, 965, 967 Art. 32(1)(c) . . . . . . . . . . . . . . . . . . . 965, 970 Art. 32(1)(d) . . . . . . . . . . . . . . . 127, 965, 971 Art. 32(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 971 Art. 33 . . . . 121, 128, 136, 270, 925, 978–87, 990–1, 993, 995, 997–8, 1005, 1008, 1010, 1055, 1061, 1068, 1072, 1092, 1099–100, 1102, 1112, 1140n, 1143–4, 1163, 1204, 1212, 1219n Art. 33(1) . . . . . . . . 930, 983–5, 987, 989–91, 998, 1008–10 Art. 33(2) . . . . . . . 963, 981n, 982–5, 991–3, 995–1002, 1005–11, 1183 Art. 33(3) . . . . . 22–3, 98n, 137, 862n, 930n, 982–4, 991n, 998–9, 1007–9, 1011, 1099, 1102n, 1212–13 Art. 34 . . . . . . . . 194, 1000, 1012–14, 1017, 1019n, 1023, 1027, 1030, 1041–2, 1061, 1062n, 1066n, 1164, 1196, 1219n Art. 34(1) . . . . . . . . . . . . . . 1024, 1062n, 1089 Art. 34(2) . . . . . . . 1017, 1021n, 1024, 1033, 1173n, 1194 Art. 34(3) . . . . . . . . . . . 1025–7, 1062n, 1088 Art. 34(4) . . . . . . . . . . . 98n, 194, 1008, 1027 Art. 34(5) . . . . . . . . . . 1031–2, 1139, 1142–3 Art. 34(6) . . . . . . . . . . . . 1032, 1140n, 1173n Art. 34(7) . . . . . . . . . . . . . . . . . . . . . . . . . . 1033 Art. 34(8) . . . . . . . . . . . . . . . . . . . . . . . . . . 1033 Art. 34(9) . . . . . . . . . . . . . . . . . . . 1033, 1034n Art. 34(10) . . . . . . . . . . . . . . 1034, 1088, 1234 Art. 34(11) . . . . . . . . . . . . . . . . . . . . . . . . . 1035 Art. 34(12) . . . . . . . . . . . . . . . . . . . . . . . . . 1036 Art. 34(13) . . . . . . . . . . . . . . . . . . . . . . . . . 1036 Art. 35 . . . . . . . 38, 58, 311, 515, 569, 1013, 1038–47, 1051–3, 1061, 1079, 1088–90, 1122, 1212–13, 1219, 1251 Art. 35(1) . . . . . 250n, 1044–5, 1047, 1066n, 1088n, 1089n, 1212n Art. 35(2) . . . . . . . . . . . . . 856n, 1047, 1089n, 1091, 1212n Art. 35(3) . . . . . . . . . . . . . . . 1045, 1047, 1089 Art. 35(4) . . . . . . . . . . . 1039, 1049–50, 1053 Art. 35(5) . . . . . . . . . . . . . . . . . . . 1045n, 1054
lxxiv
Table of Treaties and International Instruments
Art. 36 . . 1013, 1060–1, 1079, 1121n, 1212 Art. 36(1) . . . 1066, 1071, 1078, 1089, 1213n Art. 36(2) . . . . . . . . . . . . . . . 1078–9, 1089–90 Art. 36(3) . . . . . . . . . . . . . . . . . . . . . . . 1080–1 Art. 36(4) . . . . . . . . . . . . . . . . . . . . 1081, 1213 Art. 36(5) . . . . . . . . . . . . . 1082, 1089n, 1101, 1110n, 1114 Art. 37 . . . . . . 1013, 1084–8, 1091, 1094–9, 1101, 1103 Art. 37(1) . . . . . . . . . . . . 1085, 1088, 1090–1, 1096–7, 1101 Art. 37(2) . . . . . . 1076n, 1085, 1097, 1100–1 Art. 38 . . . . . . . . . 576, 1006n, 1013, 1061n, 1082–3, 1089n, 1105–8, 1110n, 1112n, 1113, 1196 Art. 38(a) . . . . . . . . . . . . . . . . . 1108–17, 1142 Art. 38(b) . . . . . . . . . 1090n, 1108n, 1109–11, 1113n, 1117 Art. 39 . . . . . . . . 1013, 1119–24, 1127, 1196 Art. 39(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 1121 Art. 40 . . . . . . 1023n, 1061n, 1135–7, 1139, 1140n, 1143, 1148n, 1194 Art. 40(1) . . . . . . . . . . . . . . . . 1138–9, 1142–4 Art. 40(2) . . . . . . . . . . . . . . . . . . . . 1139, 1144 Art. 41 . . . . . . . . 1035, 1145–7, 1149, 1159, 1174, 1186, 1193n, 1216 Art. 42 . . . . . . . . 1148, 1150–2, 1155, 1157, 1158n, 1159, 1163, 1200n Art. 43 . . . . . . . . . 1113, 1148, 1152, 1154n, 1156–9, 1163, 1173, 1195n Art. 44 . . . . . . 8, 1010, 1113, 1139n, 1160n, 1162–6, 1169n, 1185, 1195n Art. 44(1) . . . . . . . . . . . . . 1149, 1152, 1153n, 1155, 1165, 1168 Art. 44(2) . . . . . . . . . . . . . . . . . 1168–9, 1192n Art. 44(3) . . . . . . . . . . . . . . . . . . . . . . 1169–70 Art. 44(4) . . . . . . . . . . . . . 1139n, 1141, 1143, 1169, 1170n Art. 45 . . . . . . . . . . . . . . 1163, 1169, 1171–3 Art. 45(1) . . . . . . . . . . . . . . . . . . 1144, 1171–3 Art. 45(2) . . . . . . . . . . . . . . . . . . . . . . . . . . 1174 Art. 46 . . . . . . . . 524n, 1175–6, 1185, 1228n Art. 46(1) . . . . . . . . . . 524, 1177, 1192, 1200 Art. 46(2) . . . . . . . . . . . . . . . . . . . . . . . . . . 1186 Art. 47 . . . . . . . 1143, 1163, 1169, 1188–92, 1194–5, 1197 Art. 47(1) . . . . . . . . . 1139, 1142, 1192, 1196 Art. 47(2) . . . . . . . . . . . . . . . . . . . . . . . . . . 1195 Art. 47(3) . . . . . . . . . . . . . . . . . . . . . . . . . . 1196 Art. 48 . . . . 1148, 1193n, 1195n, 1198–203 Art. 49 . . . . . . . . . . . . . . . . . . . . . . . . 1204–12 Art. 50 . . . . . . . . . . . . . . . . . . . 1211, 1214–17 Recital (a) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
Recital (c) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11 Recital (i) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17 Recital (p) . . . . . . . . . . . . . . . . . . . . . . . . . . . 25 Recital (q) . . . . . . . . . . . . . . . . . . . . . . . . . 25–6 Recital (y) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33 Optional Protocol to CRPD 2006 . . . . 442, 846, 1061, 1087, 1089–90, 1095, 1103–4, 1114, 1122, 1153, 1197, 1212, 1219–20, 1223, 1225–6, 1228, 1233–4, 1236n, 1237, 1246–8, 1253 Art. 1 . . . . . . . . . . . . . . . . . . . . . . . 1222, 1239 Art. 1(1) . . . . . . . . . . . . . . . 399, 1222–2, 1226 Art. 1(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 1226 Art. 1(20 . . . . . . . . . . . . . . . . . . . . . . . . . . 1222 Arts 1–5 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1122 Art. 2 . . . . . . . . . . . . . . . 1095, 1097, 1226–7 Art. 2(d) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 398 Art. 2(d)(e) . . . . . . . . . . . . . . . . . . . . . . . . . 299n Art. 2(e) . . . . . . . . . . . . . . . . . . . . . . 756, 1232 Art. 2(f ) . . . . . . . . . . . . . . . . . . . . . . . . . . . 1233 Art. 3 . . . . . . . . 1089, 1095, 1234–5, 1237–8 Art. 4 . . . . . . . . . . . . . . . . . . . . 1089, 1239–40 Art. 4(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 1096 Art. 4(2) . . . . . . . . . . . . . . . . . . . . . 1095, 1241 Art. 5 . . . . . . . . . 1089, 1095, 1104n, 1246–7 Art. 6 . . . . . . 1080, 1089, 1096, 1133, 1254n Art. 6(1) . . . . . . . . . . . . . . . . . . . . 1080n, 1096 Art. 6(2) . . . . . . . . . . . . . . . . . . . . 1037n, 1096 Art. 6(3) . . . . . . . . . . . . . . . . . . . . 1096n, 1097 Art. 6(4) . . . . . . . . . . . . . . . . . . . . . . . . . . . 1097 Art. 6(5) . . . . . . . . . . . . . . . . . . . . . . . . . . 1096n Art. 6 . . . . . . . . . . . . . . . . . . . . . . . 1252, 1255 Arts 6–8 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1252 Art. 7 . . . . . . . . . . . . . . . . . . . . . . . 1252, 1255 Art. 7(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 1097 Art. 7(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 1097 Art. 8 . . . . . . . . . . . . . . . . . . 1096, 1252, 1255 Art. 12 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1163n Art. 15 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1197 Art. 16 . . . . . . . . . . . . . . . . . 1176, 1210, 1212 Art. 17 . . . . . . . . . . . . . . . . . . . . . . 1210, 1212 Art. 18 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1211 International Convention for the Protection of All Persons from Enforced Disappearance (CED) . . . 48, 50, 384, 1014, 1033, 1040n, 1086, 1146n, 1195n, 1219n Preamble . . . . . . . . . . . . . . . . . . . . . . . . . . . 50n Arts 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 384n Art. 8 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 384n Art. 11 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 384n Art. 17 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 384n Art. 19(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 51n
Table of Treaties and International Instruments Art. 26 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1022n Art. 26(1) . . . . . . . . . . . . . . . . . . . . . . . . . 1025n Art. 26(4) . . . . . . . . . . . . . . . . . . . . . . . . . . 1033 Art. 26(9) . . . . . . . . . . . . . . . . . . . . . . . . . . 1086 Art. 28(2) . . . . . . . . . . . . . . . . . . . . . . . . . 1117n Art. 31(1) . . . . . . . . . . . . . . . . . . . . . . . . . 1227n Art. 33 . . . . . . . . . . . . . . . . . . . . 1096n, 1252n Art. 36(1) . . . . . . . . . . . . . . . . . . . . . . . . . 1120n Art. 38(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 1151 Art. 39 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1172 Art. 44 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1191n Art. 45 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1215n 2007 International Coffee Agreement Art. 40 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1163n Lisbon Treaty . . . . . . . . . . . . . . . . . . . . . 918, 939 2008 Convention on Cluster Munitions . . . 30n Optional Protocol to the ICESCR 1966 . . . . . . . . . . . . . . . . . . 1210–11, 1219n Art. 3 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1227n Art. 3(c) . . . . . . . . . . . . . . . . . . . . . . . . . . 1229n Art. 9(2) . . . . . . . . . . . . . . . . . . . . . . . . . . 1249n Art. 11 . . . . . . . . . . . . . . . . . . . . 1096n, 1252n Art. 16 . . . . . . . . . . . . . . . . . . . . . . . . 1210–11 2009 Asian Human Rights Declaration . . . . 836 Kampala Convention for the Protection and Assistance of Internally Displaced Persons in Africa . . . . . . . . . . . . . . . . . . . 333 Art. 4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 333n Art. 4(4)(f ) . . . . . . . . . . . . . . . . . . . . . . . . . 333n 2010 Antigua Convention for Cooperation in the Protection and Sustainable Development of the Marine and Coastal Environment of the Northeast Pacific . . . . . . . . . . . . . . . . . . . 977 Art. 3(1)(a) . . . . . . . . . . . . . . . . . . . . . . . . . 977n International Cocoa Agreement 2010 Art. 4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1166n Art. 4(5) . . . . . . . . . . . . . . . . . . . . . . . . . . 1163n Statute of the International Renewable Energy Agency Art. 6 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1166n 2011 International Law Commission Articles on the Responsibility of International Organizations Art. 61 . . . . . . . . . . . . . . . . . . . . . . . . . . . 1161n 2013 Marrakesh Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired, or
lxxv
Otherwise Print Disabled (MVT) (VIP Treaty) . . . . . . . . . 128, 277, 617, 865, 873, 881, 891, 1208 Art. 2(c) . . . . . . . . . . . . . . . . . . . . . . . . . . . 617n Art. 2(c)(iv) . . . . . . . . . . . . . . . . . . . . . . . . 617n Art. 4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1208n Art. 5 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1208n Art. 6 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1208n Art. 7 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 895 Art. 8 . . . . . . . . . . . . . . . . . . . . . . . . . 617, 621 Art. 10(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 128 2014 ILO Protocol to the Forced Labour Convention 1930 Preamble . . . . . . . . . . . . . . . . . . . . . . . . . . . 799 Art. 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 799 UN Fundamental Principles of Official Statistics . . . . . . . . . . . 936, 944n Principle 6 . . . . . . . . . . . . . . . . . . . . . . . . . 944n UN Principles Governing International Statistical Activities . . . . . . . . . . . 936, 944n Principle 6 . . . . . . . . . . . . . . . . . . . . . . . . . 944n Principle 7 . . . . . . . . . . . . . . . . . . . . . . . . . 944n 2015 Sendai Framework for Disaster Risk Reduction 2015–2030 . . . . . . . . . . . . . . 315, 333, 975 para 7 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 333 para 19(d) . . . . . . . . . . . . . . . . . . . . . . . . . . 333 para 19(g) . . . . . . . . . . . . . . . . . . . . . . . . . . . 333 para 32 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 333 para 36(a)(iii) . . . . . . . . . . . . . . . . . . . . . . . . 333 2016 American Declaration on the Rights of Indigenous Peoples (ADRIP) . . . . . . . . . . . . . . . . . . . . 898, 907 Art. 14(3) . . . . . . . . . . . . . . . . . . . . . . . . . . 907n Charter on Inclusion of Persons with Disabilities in Humanitarian Action . . . . . . . . . . . . . . . 315, 328–9, 331n Convention on the Counterfeiting of Medical Products and Similar Crimes involving Threats to Public Health (Medicrime Convention) Art. 28(3) . . . . . . . . . . . . . . . . . . . . . . . . . 1173n New York Declaration for Refugees and Migrants . . . . . . . . . . . . . . . . . . . . . . . . . 336 Protocol to the African Charter on Human and Peoples Rights on the Rights of Persons with Disabilities in Africa . . . . . 767 Art. 15 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 767
Table of Cases INTERNATIONAL COURTS, COMMISSIONS, AND TRIBUNALS African Commission on Human and Peoples’ Rights Legal Resources Foundation v Zambia (2001) AHRLR 84 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 849n Modise v Botswana (2000) AHRLR 30 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 849n Purohit v The Gambia (2003) AHRLR 96 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 849
Court of Arbitration for Sport Oscar Pistorius v International Association of Athletics Federations (IAAF) (2008) 3 Aust & NZ Sports LJ 145 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 914–15
Court of Justice of the European Union A, B and C v Staatssecretaris van Veiligheid en Justitie (Cases C-148/13 to C-150/13) 11 December 2014 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 499 Accession to the ECHR (CJEU), Re (2014) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1152n Coleman v Attridge Law, Case C-303/06, [2008] ECR I-5603 . . . . . . . . . . . . . . . . . . . . . . . . . 649, 767n HK Danmark v Dansk almennyttigt Boligselskab [2013] C-335/11 . . . . . . . . . . . . . . . . . . . . . . . 38n, 62 HK Danmark, acting on behalf of Jette Ring v Dansk almennyttigt Boligselskab v HK Danmark, acting on behalf of Lone Skouboe Werge v Dansk Arbejdsgiverforening, acting on behalf of Pro Display A/S, in liquidation, [Joined Cases C-335/11 and C-337/11 HK Danmark (Ring and Skouboe Werge)] . . . . . . . . . . . 796n Netherlands v European Parliament and Council, Case C-377/98 [2001] ECR I-7079 . . . . . . . 91n, 498n O’Flynn v Adjudication Officer, Case C-237/94 [1996] 3 CMLR 103 . . . . . . . . . . . . . . . . . . . . . . . 355n Oliver Brüstle v Greenpeace (Case C-34/10) (2010/C 100/29) 18 October 2011 . . . . . . . . . . . . . . . . 499 Sonia Chacon Navas v Eurest Colectiviades SA [2006] C-13/05 . . . . . . . . . . . . . . . . . . . . 38n, 61–2, 942 Wolfgang Glatzel v Freistaat Bayern, Case No C-356/12, ECLI:EU:C:2014:350 . . . . . . . . . . . . . . . . 792n Z v A Government Department and The Board of Management of a Community School, Case C-363/12, CJEU Judgment (18 March 2014) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62, 1163n
European Court of Human Rights A v UK (1999) 27 EHRR 611 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 212n A v United Kingdom (1998) 27 EHRR 611 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 447n A v United Kingdom App no 25599/94 (1988) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 123n A M M v Romania App No 2151/10 (2012) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 220n ABC v Ireland (2011) 53 EHRR 13 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 722n Aerts v Belgium (1998) 29 EHRR 50 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 423 Alajos Kiss v Hungary (2013) 56 EHRR 38 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1069 Al-Skeini and Others v United Kingdom (2011) 53 EHRR 18 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1185n Amann v Switzerland (2000) 30 EHRR 843 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 611n, 620n AN v Lithuania judgment (31 August 2016) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 439n Anheuser-Busch Inc. v Portugal (2007) 44 EHRR 42 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 375n Aron Kiss v Hungary (2010) ECHR 1649 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 497n Arskaya v Ukraine [2013] ECHR 1235 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 223n, 362n Asalya v Turkey [2014] ECHR 398 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 407n Ashingdane v United Kingdom [1985] 7 EHRR 528 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 403 Assenov v Bulgaria (1999) 28 EHRR 652 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 427n, 450 Aswat v United Kingdom (2014) 58 EHRR 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 323n B v France (1993) 16 EHRR 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 615n B S v Spain App No 47159/08 (24 July 2012) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 78n
lxxviii
Table of Cases
Bankovic and others v Belgium and others (2001) ECHR 890 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1225n Bati and Others v Turkey [2008] ECHR 246 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 445n Belashev v Russia App No 28617/03 (2008) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 722n Béláné Nagy Hungary App no 53080/13 (13 December 2016) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 375n Belvedere Alberghiera Sr1 v Italy App no 31524/96 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 375n Bensaid v the United Kingdom (2001) 33 EHRR 10 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 497n, 615n Beyeler v Italy (2000) 33 EHRR 52 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 375n Blokhin v Russia, (2016) ECHR 103 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 220n Botta v Italy Appl no 21439/93, . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 560 Botta v Italy (1998) 26 EHRR 241 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 919n Branduse v Romania App No 6586/03 (2009) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 722n Budayeva et al v Russia (2014) 59 EHRR 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 323n Bures v Czech Republic [2012] ECHR 1819 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 428n, 450n, 451 Burghartz v Switzerland (1994) 18 EHRR 101 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 560n, 615n Çam v Turkey, App No 51500/08 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 79n, 677n Capital Bank AD v Bulgaria (2005) 44 EHRR 48 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1161n Case of A-MV v Finland [2017] ECHR 273 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1126n Case Relating to Certain Aspects of the Laws on the Use of Languages in Education in Belgium (Belgian Linguistics Case) (No 2) (1968) 1 EHRR 252, 284 . . . . . . . . . . . . . . . . . . . . . 168 Centre for Legal Resources on behalf of Valentin Câmpeanu v Romania, App No 47848/08, . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1223 Cestaro v Italy (2000) 29 EHRR 403 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 443, 445n, 450n, 451 Cestaro v Italy [2015] ECHR 352 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 428n Chapman v United Kingdom [GC] (2001) 33 EHRR 399, joint with Coster (no 24876/94), Beard (no 24882/94), Jane Smith (No 25154/94), and Thomas Lee (no 25289/94) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 899n Ciorap v Moldova (2007) ECHR 502 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 444 Copland v United Kingdom (2007) 45 EHRR 37 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 619n Costello Roberts v United Kingdom (1993) 19 EHRR 112 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 447n DD V Lithuania [2012] ECHR 254 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 439n, 532 D H and Others v the Czech Republic (2008) 47 EHRR 3 . . . . . . . . . . . . . . . . . . . . . . . . 73n, 355n, 676 D H and Others v the Czech Republic [GC](2008) 47 EHRR 59 . . . . . . . . . . . . . . . . . . . . . . . . . . . 899n Đorđević v Croatia (2012) ECHR 1640 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 210, 471 Drobnjak v Serbia (2009) ECHR 1526 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 497n Dudgeon v United Kingdom (1983) 5 EHRR 573 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 615n E v Norway (1990) 17 EHRR 30, 57–58 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 423 Elefteriadis v Romania App 38427/05 (2011) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 722n Fyodorov and Fyodorova v Ukraine App No 39229/03 (2011) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 722n Gard and Others v United Kingdom App No 39793/17 (2017) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 303n Gherghina v Romania (2015) 61 EHRR SE15 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 560n Giacomelli v Italy (2007) 45 EHRR 38 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 609, 619n Gladkiy v Russia App No 3242/03 (2010) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 722n Glass v United Kingdom [2004] ECHR 103 . . . . . . . . . . . . . . . . . . . . . . . . . 221n, 223n, 297, 498, 919n Glor v Switzerland App No 13444/04 (2009) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62, 74n Gorzelik and Ors v Poland [GC] (2005) 40 EHRR 4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 899n Guberina v Croatia, [2016] ECHR 287 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73n, 218, 300n Guillot v France App No 22500/93 (1996) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 615n Hajol v Poland App No 1127/06 (2010) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 722n Herczegfalvy v Austria (1992) 15 EHRR 437 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 414, 471n, 610n Hirst v United Kingdom No 2 (GC) [2005] ECHR 681 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 848n
Table of Cases
lxxix
HLR v France (1997) 26 EHRR 29 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 447n Horvath and Kiss v Hungary App No 38832/06 (2010) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 848, 860n Horváth and Kiss v Hungary App No 11146/11 (2013) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 676 Hutchison Reid v United Kingdom (2003) 37 EHRR 9 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 438n Hutten-Czapska v Poland (2006) ECHR 628 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1243n I G v Slovakia App No 15966/04 (2012) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 453n, 454, 454n IB v Greece [2013] ECHR 283 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 774n IC v Romania, App No 36934/08 (2016) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 215n Ireland v United Kingdom [1978] 2 EHRR 25 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 443 Jalloh v Germany (2007) 44 EHRR 32 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 446, 722n Johansson v Finland (2007) 47 EHRR 369 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 909n Kacper Nowakowski v Poland, App No 32407/13 (2017) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 223n, 909n Kędzior v Poland [2012] ECHR 1809 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 439n, 532 Keegan v Ireland (1994) 18 EHRR 342 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 618n Keenan v United Kingdom (2001) 33 EHRR 913 . . . . . . . . . . . . . . . . . . 93n, 323n, 424, 445, 446n, 463 Kharchenko v Ukraine App No 40107/02 (2011)...... 722n Khudobin v Russia (2009) 48 EHRR 22 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 722n Kiyutin v Russia (2011) 53 EHRR 26 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 722n Kudla v Poland [GC] (2000) 135 EHRR 198 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 424 Kuttner v Austria App No 7997/08 (2015) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 408n Kutzner v Germany App No 46544/99 (2002) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 653 Kuznetsov and ors v Russia (2009) 49 EHRR 15 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 909n L v Lithuania (2008) 46 EHRR 22 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 723n Lambert and Others v France (1998) 30 EHRR 346 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 312n Liberty v United Kingdom (2009) 48 EHRR 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 610n, 620n Lithgow and others v United Kingdom (1986) 8 EHRR 329 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 375n Loizidou v Turkey (1995) 20 EHRR 99 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1185n Loizidou v Turkey (1996) ECHR 70 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1225n Malone v United Kingdom (1985) 7 EHRR 14 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 610n Marper v United Kingdom [GC] (2009) 48 EHRR 50 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 615n, 620n Matter v Slovakia (1999) ECHR 38 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 439n McDonald v United Kingdom App No 4241/12 (2014) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 560 McGlinchey v United Kingdom (2003) 37 EHRR 41 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 463 Mechenkov v Russia App No 35421/05 (2008) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 722n Megyeri v Germany (1992) 15 EHRR 584, 590–92 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 423 Mihailovs v Latvia [2013] ECHR 65 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 407n, 438, 439n, 532 Mikulić v Croatia App No 53176/99 (2002) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 615 MM v UK App No 24029/07 (2012) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 610n MSS v Belgium and Greece (2011) 53 EHRR 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 722n Munjaz v United Kingdom [2012] ECHR 1704 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 722n Muñoz Díaz v Spain (2010) 50 EHRR 49 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 899n Nasri v France (1996) 21 EHRR 458 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 323n, 612n, 909n NB v Slovakia (2012) ECHR 991 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 454n Neulinger and Shuruk v Switzerland [2010] ECHR 1053 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 220n Nevermerzhitsky v Ukraine (2006) 43 EHRR 32 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 444, 445n, 463 Niemietz v Germany (1992) 16 EHRR 97 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 560n Oliari and Others v Italy (2017) 65 EHRR 26 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 618n Olisov and Others v Russia judgment (2 May 2017) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 443n Oršuš and Others v Croatia App No 15766/03 (2010) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 676n
lxxx
Table of Cases
Paradiso and Campanelli v Italy App No 25358/12 (2015) . . . . . . . . . . . . . . . . . . . . . . . . . . . 220n, 638n Peck v United Kingdom (2003) 36 EHRR 41 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 615n Pfeifer v Austria (2009) 48 EHRR 8 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 622n Pleso v Hungary [2012] ECHR 1767 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 438n Pretty v the United Kingdom (2002) 35 EHRR 1 . . . . . . . . . . . . . . . . . . . 18n, 91, 93n, 312, 497n, 762n Price v United Kingdom (2002) 34 EHRR 53 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 560n Price v United Kingdom [2001] ECHR 453 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 323n, 446n, 464 Prokopovich v Russia (2006) 43 EHRR 10 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 619n R P and Others v United Kingdom [2012] ECHR 1796 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 223n R R v Poland, App No 27617 (2011) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 208n Rakevich v Russia (2003) ECHR 558 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 423n Refah Partisi and others v Turkey, App No 41340/98 (2003) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 91n Rotaru v Romania App No 28341/95 (2000) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 610n RP v United Kingdom [2012] ECHR 1796 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 397 Ruiz Rivera v Switzerland [2014] ECHR 156 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 408n Salakhov and Islyamova v Ukraine (2013) App No 28005/08 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 722n Saviny v Ukraine (2008) 51 EHRR 780 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 221 Sciacca v Italy (2006) 43 EHRR 20 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 615n Segerstedt-Wiberg and Others v Sweden (2007) 44 EHRR 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 612n Selmouni v France (2000) 29 EHRR 403 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 427n, 443, 445n Sentges v Netherlands (2004) 7 CCL Rep 400 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 579 Shelly v United Kingdom [2008] ECHR 108 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 722n Shtukatorow v Russia (2008) ECHR 223 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 379n, 397n, 438n, 439 Shtukaturov v Russia (2012) 54 EHRR 27 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 722n Sitaropoulos and Giakoumopoulos v Greece (2013) 56 EHRR 9 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 560n Slawomir Musial v Poland App No 28300/06 (2009) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 722n Soering v United Kingdom (1989) 11 EHRR 439 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 427n, 428n, 450 Stanev v Bulgaria (2010) ECHR 1182 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 424n, 446n Stanev v Bulgaria (2012) 55 EHRR 22 . . . . . . . . . . . . . . . . . . . . . . . 379n, 438n, 439n, 446, 541–2, 722n Stork v Germany (2005) ECHR 406 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 498 Sunday Times v United Kingdom (1979) 2 EHRR 245 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1215n Sykora v Czech Republic [2012] ECHR 1960 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 439n, 722n Testa v Croatia (2008) 47 EHRR 29 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 722n Thlimmenos v Greece (2000) 31 EHRR 411 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 75n Tre Traktörer Aktiebolag v Sweden (1989) 13 EHRR 309 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 375n Tyrer v United Kingdom (1978) 2 EHRR 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 212n Tysiac v Poland (2007) 45 EHRR 42 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 722, 723n Tysiac v Poland (2007) ECHR 219 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 726n Valentine Campeanu v Romania App 47848/08 (2014) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 297 Van der Leer v the Netherlands (1990) 12 EHRR 567 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 438n Varbanov v Bulgaria (2000) ECHR 457 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 423n VC v Slovakia App No 18968/07 (2011) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 453 VKV v Russia App No 68059/13 (2017) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 212n Von Hannover v Germany (2005) 40 EHRR 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 605n Wieser and Bicos Beteiligungen GmbH v Austria (2007) 45 EHRR 44 . . . . . . . . . . . . . . . . . . . . . . . 619n Winterwerp v the Netherlands [1979] 2 EHRR 387 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 352n, 423, 438n X and Y v Croatia [2011] ECHR 1835 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 439n X and Y v Netherlands (1986) 8 EHRR 235 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 213n, 497n, 615n X v Croatia App No 11223/04 (2008) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 653
Table of Cases
lxxxi
X v Finland (2012) ECHR 1371 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 452n X v Netherlands App No 8978/80 (1985) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 123n X v United Kingdom (1981) 4 EHRR 188 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 424, 438n Y.F. v Turkey (2003) 39 EHRR 715 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 497n Z H v Hungary App No 28973/11 (2012) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 909n Z v Finland (1998) 25 EHRR 371 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 615n Z v United Kingdom (2001) 34 EHRR 97 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 428n, 447n, 450n Zehnalová and Zehnal v Czech Republic App No 38621/97 (2002) . . . . . . . . . . . . . . . . . . . . . . . . . . 560
European Committee of Social Rights (ECSR) European Action of the Disabled (AEH) v France, Merits (11 September 2013). . . . . . . . . . . . . . . . . . 681 Federation of Employed Pensioners of Greece (IKA-ETAM) v Greece Merits (7 December 2012) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1161n Pensioners’ Union of the Agricultural Bank of Greece (ATE) v Greece Merits (16 January 2012) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1161n
INTER-A MERICAN COURT AND COMMISSION OF HUMAN RIGHTS Acevedo-Jaramillo v Peru Judgment (2006) (Ser C) No 157 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 772n Bueno-Alves v Argentina, Merits, Reparations and Costs (2007) (Ser C) No 164 . . . . . . . . . . . . . . . . 323n Case of Plan de Sánchez Massacre v Guatemala (2004) (Ser C) No 105 . . . . . . . . . . . . . . . . . . . . . . . 898n Case of Saramaka People v Suriname (2007) (Ser C) No 172 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 898n Comunidad Moiwana v Suriname, (2016) (Ser C) No 124 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 898n Constitutional Court v Peru (Competence) (1999) (Ser C) No 55 ������������������������������������������������� 1201n In the Matter of María Inés Chinchilla Sandoval (Guatemala), Case 12.739 (2 April 2014) . . . . . . . . 411n Ivcher Bronstein v Peru (Competence) (1999) (Ser C) No 54 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1201n Mapiripán Massacre v Colombia (2005) (Ser C) No 122 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 294n Opario Lemoth Morris et al [Miskitu Divers] v Honduras, Report, Case No 1186–04, Report No 121/09, OEA/Ser L/V/II, doc 51 corr 1 (2009) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 783 Ramcharan v Trinidad and Tobago (Admissibility) Case 12.400, Rep No 49/02 (2002) . . . . . . . . . . 1202n Rosario Congo v Ecuador Case 11427 Rep 6399 (13 April 1999) . . . . . . . . . . . . . . . . . . . . . . . . . . . 323n Salvador Chiriboga v Ecuador (Preliminary Objection and Merits) (2008) (Ser C) No 179 . . . . . . . . 375n The Mayagna (Sumo) Awas Tingni Community v Nicaragua (2001) (Ser C) No 79 . . . . . . . . . . . . . . 898n Velásquez Rodríguez v Honduras (1988) (Ser C) No 4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 123n Xákmok Kásek Indigenous Community v Paraguay, (2010) (Ser C) No 214 . . . . . . . . . . . . . . . . . . . 291n Ximenes Lopes v Brazil (2006) (Ser C) No 149 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 428n
International Centre for the Settlement of Investment Disputes Euro Telecom International (ETI) v Bolivia, ICSID Case No. ARB/07/28 (2009) . . . . . . . . . . . . . . 1202n Saint-Gobain Performance Plastics Europe v Venezuela ICSID Case No. ARB/12/13 (2013) . . . . . . . . . 1202n Valle Verde Sociedad Financiera SL v Venezuela ICSID Case No. ARB/12/18 (2012) . . . . . . . . . . . 1202n
International Court of Justice Ahmadou Sadio Diallo (Republic of Guinea v Democratic Republic of the Congo), Preliminary Objections, Judgment (2007) ICJ Rep 582 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1249n Avena and Other Mexican Nationals (Mexico v USA), Judgment (2004) ICJ Rep 12 . . . . . . . . . . . . 138n Hungary v Slovakia, Judgment Merits [1997] ICJ Rep 7 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 977n Interhandel (Switzerland v USA) Merits (1959) ICJ Rep 57 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1230n LaGrand (Germany v USA) Merits (2001) ICJ Rep 466 . . . . . . . . . . . . . . . . . 1185, 1215n, 1241, 1242n LaGrande Case (FRG v US) (2001) ICJ Rep 446 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 138n Legal Consequences of the Construction of a Wall in the Occupied Palestinian Territory, Advisory Opinion (2004) ICJ Rep 136 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1116n
lxxxii
Table of Cases
Legality of the Use by a State of Nuclear Weapons in Armed Conflict, Advisory Opinion (1996) ICJ Rep 66 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1116n Nottebohm case (Liechtenstein v Guatemala), Second Phase, Judgment [1955] ICJ Rep 4 . . . . . . . . . 520 Republic of Guinea v Democratic Republic of the Congo) (Merits) [2010] ICJ Rep 639 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 983n, 1126n
International Criminal Tribunal for the Former Yugoslavia (ICTY) ICTY Prosecutor v Furundžija Trial Chamber Judgment (10 December 1998) . . . . . . . . . 427, 428n, 450 ICTY Prosecutor v Kunarac, Appeals Chamber judgment (12 June 2002) . . . . . . . . . . . . . . . 446n, 447–8 ICTY Prosecutor v Kvocka Appeals Chamber judgment (28 February 2005) . . . . . . . . . . . . . . . . . . . . 447 Prosecutor v Tadic Appeals Chamber Judgment (15 July 1999) 105 ILR 419 . . . . . . . . . . . . . . . . . . . 320n
Nuremburg Military Tribunals United States v Karl Brandt and others, published in Trials of War Criminals before the Nuremberg Military Tribunals under Control Council Law No 10 (1950) . . . . . . . . . . . . . . . . . . 453n
UNITED NATIONS Human Rights Committee Arenz et al v Germany, UN Doc CCPR/C/80/D/1138/2002 (2004) . . . . . . . . . . . . . . . . . . . . . . . . . 922n A R J v Australia UN Doc CCPR/C/60/D/692/1996 (11 August 1997) . . . . . . . . . . . . . . . . . . . . . 1245n Ahani v Canada UN Doc CCPR/C/80/D/1051/2002 (15 June 2004) . . . . . . . . . . . . . . . . . . . . . . . 1242n Alekseev v Russian Federation UN Doc CCPR/C/109/D/1873/2009 (2 December 2013) . . . . . . . 1230n Aumeeruddy-Cziffra v Mauritius UN Doc CCPR/C/OP/1 (1984) . . . . . . . . . . . . . . . . . 612, 613n, 619n B and C v Czech Republic UN Doc CCPR/C/113/D/1967/2010 (1 July 2015) . . . . . . . . . . . . . . 1232n B K v Czech Republic UN Doc CCPR/C/105/D/1844/2008 (5 September 2012) . . . . . . . . . . . . . 1228n Bleier v Uruguay UN Doc CCPR/C/15/D/30/1978 (29 March 1982) . . . . . . . . . . . . . . . . . . . . . . . 1095 Bakur v Belarus UN Doc CCPR/C/114/D/1902/2009 (7 September 2015) . . . . . . . . . . . . . . . . . . . 586n Bourchef v Algeria UN Doc CCPR/C/86/D/1196/2003 (27 April 2006) . . . . . . . . . . . . . . 1223n, 1243n Burdyko v Belarus UN Doc CCPR/C/114/D/2017/2010 (25 September 2015) . . . . . . . . . . . . . . . 1242n Cabal & Pasini Bertran v Australia UN Doc CCPR/C/78/D/1020/2001 (2003) . . . . . . . . . . . . . . . . 922n Canepa v Canada UN Doc CCPR/C/59/D/558/1993 (1993) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 612 Castañeda v Mexico UN Doc CCPR/C/108/D/2202/2012 (29 August 2013) . . . . . . . . . . . . . . . . . 1245n Chiti v Zambia, UN Doc CCPR/C/105/D/1303/2004 (28 August 2012) . . . . . . . . . . . . . . . . . . . . 1231n Coeriel v The Netherlands UN Doc CCPR/C/52/D/453/1991 (1994) . . . . . . . . . . . . . . . . . . . . . . . . 614 Croes, deceased and his heirs v The Netherlands UN Doc CCPR/C/34/D/164/1984 (1988) . . . . . 1225n Evans v Trinidad and Tobago (2003) UN Doc CCPR/C/77/D/908/2000 . . . . . . . . . . . . . . . . . . . . 1202n F K A G et al v Australia UN Doc CCPR/C/108/D/2094/2011 (28 October 2013) . . . . . . . . . . . . 1243n Fanali v Italy UN Doc CCPR/C/18/D/75/1980 (31 March 1983) . . . . . . . . . . . . . . . . . . . . . . . . . 1230n Fernando v Sri Lanka UN Doc CCPR/C/83/D/1189/2003 (10 May 2005) . . . . . . . . . . . . . . . . . . 1243n Gillot v France, Communication No 932/2000: Views (15 July 2002) UN Doc A/57/40 270 . . . . . . 168n Gunaratna v Sri Lanka UN Doc CCPR/C/95/D/1432/2005 (17 March 2009) . . . . . . . . . . . . . . . . 1243n Hamilton v Jamaica UN Doc CCPR/C/66/D/616/1995 (18 July 1999) . . . . . . . . . . . . . . . . . . . . . . 323n Joseph Frank Adams v the Chez Republic Communication No 586/1994, 23 July 1996 . . . . . . . . . . . 73n Judge v Canada UN Doc CCPR/C/78/D/829/1998 (13 August 2003) . . . . . . . . . . . . . . . . . . . . . . . 296n Khadzhiev v Turkmenistan UN Doc CCPR/C/113/D/2079/2011 (12 May 2015) . . . . . . . . . . . . . . 619n KL v Peru, UN Doc CPR/C/85/D/1153/2003 (22 November 2005) . . . . . . . . . . . . . . . . . . . . . . . . 163n Manuel Wackenheim v France Communication No 854/1999 (2002) . . . . . . . . . . . . . . . . . . . . . . . . . 144 Länsman et al v Finland UN Doc CCPR/C/58/D/671/1995 (30 October 1996) . . . . . . . . . . . . . . 1242n Länsman et al v Finland UN Doc CCPR/C/83/D/1023/2001 (15 April 2005) . . . . . . . . . . . . . . . 1242n LMR v Argentina UN Doc CCPR/C/101/D/1608/2007 (28 April 2011) . . . . . . . . . . . . . . . . . . . . . 163n Lopez Burgos v Uruguay UN Doc CCPR/C/13/D/52/1979 (29 July 1981) . . . . . . . . . . . . . . . . . . . 621n Mellet v Ireland UN Doc CCPR/C/116/D/2324/2013 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 163n Piandiong et al v Philippines UN Doc CCPR/C/70/D/869/1999 (20 December 2000) . . . . . . 1245n, 1246n Rafael Armando Rojas García v Colombia UN Doc CCPR/C/76/D/778/1997 (2002) . . . . . . . . . . . 611n
Table of Cases
lxxxiii
Sextus v Trinidad and Tobago UN Doc CCPR/C/72/D/818/1998 (16 July 2001) . . . . . . . . . . . . . 1202n Shin v Republic of Korea UN Doc CCPR/C/80/D/926/2000 (19 March 2004) . . . . . . . . . . . . . . . 1242n SYL v Australia UN Doc CCPR/C/108/D/1897/2009 (11 September 2013) . . . . . . . . . . . . . . . . . 1245n Toonen v Australia UN Doc CCPR/C/50/D/488/1992 (31 March 1994) . . . . . . . . . . . . . . . . . . . . . . 612 Valentini de Bazzano v Uruguay UN Doc CCPR/C/OP/1 (1984) . . . . . . . . . . . . . . . . . . . . . . . . . . 1223n Viana Acosta v Uruguay UN Doc CCPR/C/21/D/110/1981 (1981) . . . . . . . . . . . . . . . . . . . . . . . . . 451 X v Serbia UN Doc CCPR/C/89/D/1355/2005 (3 May 2007) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1223n X v Sweden UN Doc CCPR/C/103/D/1833/2008 (17 January 2012) . . . . . . . . . . . . . . . . . . . . . . . 1231n X v The Netherlands UN Doc CCPR/C/107/D/1886/2009 (10 May 2013) . . . . . . . . . . . . . . . . . . 1227n
CRPD Committee A F v Italy UN Doc CRPD/C/13/D/9/2012 (19 May 2015) . . . . . . . . . . . . . . . . . . . . . 248n, 791, 1234n A M v Australia, UN Doc CRPD/C/13/D/12/2013 (29 May 2015) . . . . . . . . . . . . . . . . . . . . 1223, 1239 Beasley v Australia UN Doc CRPD/C/15/D/11/2013 (25 April 2016) . . . . . . . . . . . 69n, 79n, 80n, 81n, 82n, 165, 248n, 260, 268, 272, 276, 1233n, 1250n Bujdosó v Hungary UN Doc CRPD/C/10/D/4/2011 (16 October 2013) . . . . . . . . . 248n, 1071n, 1248n D L v Sweden UN Doc CRPD/C/17/D/31/2015 (21 May 2017) . . . . . . . . . . . . . . . . . . . . . . . . . . 1232n D R v Australia UN Doc CRPD/C/17/D/14/2013 (19 May 2017) . . . . . . . . . . . . . . . . . . . . . . . . . 1232n F v Austria UN Doc CRPD/C/14/D/21/2014 (21 September 2015) . . . . . . . . . . . . 79n, 248n, 260, 276, 282, 284–6, 574–5, 577, 598, 1231n, 1250n H M v Sweden UN Doc CRPD/C/7/D/3/2011 (21 May 2012) . . . . . . . . . . 75n, 79n, 165n, 248n, 298, 407n, 555, 557, 574, 756, 1233n, 1242n, 1250n L M L v United Kingdom UN Doc CRPD/C/17/D/27/2015 (19 May 2017) . . . . . . . . . . . . . . . . . 874n, 1232n, 1242n Liliane Gröninger et al v Germany UN Doc CRPD/C/D/2/2010 (7 July 2014) . . . . . . . . . . . 248n, 792, 1248n, 1250n Lockrey v Australia UN Doc CRPD/C/15/D/13/2013 (30 May 2016) . . . . . . . . . 69n, 79n, 165n, 248n, 260, 268, 272, 276 Marie-Louise Jungelin v Sweden, UN Doc CRPD/C/12/D/5/2011 (14 November 2014) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 79n, 80n, 81n, 82n, 165n, 248n, 794–5, 1248n Marlon James Noble v Australia, UN Doc CRPD/C/16/D/7/2012 (10 October 2016) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 74n, 248n, 440n, 464, 1104n, 1224n, 1231, 1248n, 1250n McAlpine v United Kingdom UN Doc CRPD/C/8/D/6/2011 (13 November 2012) . . . . . . . . 1233, 1234n Nyusti & Takacs v Hungary, UN Doc CRPD/C/9/D/1/2010 (21 June 2013) . . . . . . . . 124n, 130, 248, 260, 271, 272n, 276, 282, 597–8, 1233n, 1234, 1248n, 1250n S C v Brazil, UN Doc CRPD/C/12/D/10/2013 (28 October 2014) . . . . . . . . 1228, 1229n, 1231n, 1239 X v Argentina UN Doc CRPD/C/11/D/8/2012 (10 October 2016) . . . . . . . . . . . . 248n, 260, 268, 274, 298, 398, 407, 464, 756, 1244, 1248n, 1250n Zsolt Bujdosó and five others v Hungary UN Doc CRPD/C/10/D/4/2011 (20 September 2013) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 844n, 846–8, 850, 852, 857, 860, 1095
Committee on the Elimination of Discrimination against Women (CEDAW) A T v Hungary, UN Doc CEDAW/C/32/D/2/2003 (2005) . . . . . . . . . . . . . . . . . . 1231n, 1242n, 1243n da Silva Pimentel v Brazil UN Doc CEDAW/C/49/D/17/2008 (2011) . . . . . . . . . . . . . . . . . . . 428n, 447 Goekce v Austria UN Doc CEDAW/C/39/D/5/2005 (6 August 2007) . . . . . . . . . . . . . . . . 1225n, 1231n Herrera v Canada UN Doc CEDAW/C/50/D/26/2010 (30 November 2011) . . . . . . . . . . . . . . . . 1245n Y W v Denmark UN Doc CEDAW/C/60/D/51/2013 (13 April 2015) . . . . . . . . . . . . . . . . . . . . . 1232n Yildirim v Austria UN Doc CEDAW/C/39/D/6/2005 (1 October 2007) . . . . . . . . . . . . . . 1225n, 1231n
Committee against Torture A A v Azerbaïdjan UN Doc CAT/C/35/D/247/2004 (25 November 2005) . . . . . . . . . . . . . . . . . . A I v Switzerland UN Doc CAT/C/32/D/182/2001 (17 May 2004) . . . . . . . . . . . . . . . . . . . . . . . . A R A v Sweden UN Doc CAT/C/38/D/305/2006 (30 April 2007) . . . . . . . . . . . . . . . . . . . . . . . . Brada v France UN Doc CAT/C/34/D/195/2002 (24 May 2005) . . . . . . . . . . . . . . . . . . . . . . . . . . Dadar v Canada UN Doc CAT/C/35/D/258/2004 (5 December 2005) . . . . . . . . . . . . . . . . . . . . .
1230n 1244n 1230n 1246n 1245n
lxxxiv
Table of Cases
Gerasimov v Kazakhstan UN Doc CAT/C/48/D/433/2010 (10 July 2012) . . . . . . . . . . . . . . . . . . 1231n Hajrizi and Others v Serbia and Montenegro UN Doc CAT/C/29/D/161/2000 (21 November 2002) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 447n Tursunov v Kazakhstan UN Doc CAT/C/54/D/538/2013 (3 July 2015) . . . . . . . . . . . . . . . . . . . . . 1242n
NATIONAL COURTS Argentina Aquino, Isacio v Cargo Servicios Industriales SA Case No A 2652 XXXVIII (2004). . . . . . . . . . . . . . 779n
Australia Ingram v QBE Insurance (Australia) Ltd [2015] VCAT No H107/2014 (18 December 2015) . . . . . . . 732n Minister of State v Teoh (1994–1995) 183 CLR 273 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1098n Nicholson & Ors v Knaggs & Ors [2009] VSC 64 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 814n X v Commonwealth [1999] HCA 63 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 774n
Belgium United Nations v B (1952) 19 ILR 490 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1109n
Canada Canada (Attorney General) v Thwaites [1994] 3 F C 38 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 774n Law v Canada (Minister of Employment and Immigration) [1999] 1 SCR 497 . . . . . . . . . . . . . . . 24, 25n R v Rose [1998] 3 SCR 262 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 403n Turnbull v Famous Players Inc (2001) 40 CHRR D/333 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 883 Vlug v Canadian Broadcasting Corp (2000) 38 CHRR D/404 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 882
Colombia Decision of the Constitutional Court, Case C-131/14, Colombian Constitutional Court (11 March 2014) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 644n Decision of the Constitutional Court, Case C-133/14 (11 March 2014) . . . . . . . . . . . . . . . . . . . . . . 457n
France Gianmartini et al v Easyjet Cass crim 15 décembre 2015, Bull crim 2015 n° 286 . . . . . . . . . . . 509n, 923n
India Francis Coralie Mullin v Administrator, Union Territory of Delhi and Ors, AIR 1981 SC 746, . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 309n Francis Coralie Mullin v Union Territory of Delhi (1981) AIR 1981 SC 746 . . . . . . . . . . . . . . . . . . . . 721 Jeeja Ghosh & ANR v Union of India & Others, Indian Supreme Court judgment (12 May 2016) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 519 Nikhil D Dattar and Niketa Mehta v Union of India (2008) 110(9) BOMLR 3293 . . . . . . . . . . . . . . 309 Olga Tellis v Bombay Municipal Corporation [1985] 2 Supp SCR 51 . . . . . . . . . . . . . . . . . . . . . . . . 309n Pascim Banga Khet Mazdoor Samity v State of West Bengal (1966) AIR SC 2426 . . . . . . . . . . . . . . 721–2 Rakesh Chandra Narayan v Union of India (1989) AIR 1989 SC 148 . . . . . . . . . . . . . . . . . . . . . . . . . 721 Ranjit Kumar v State Bank of India76, case 2009(5) Bom CR 227. . . . . . . . . . . . . . . . . . . . . . . . . . . . 298 Savitha Sachin Patil and Another v Union of India, Writ petition (Civil) No 121/17 Order (28 February 2017) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 309n State of Punjab & others v Mohinder Singh Chawla (1997) 2 SCC 83 . . . . . . . . . . . . . . . . . . . . . . . . 721
Kenya Republic v Cabinet Secretary for Transport & Infrastructure Principle Secretary & 5 Others ex parte Kenya Country Bus Owners Association & 8 Others [2014] eKLR . . . . . . . . . . 518n
New Zealand Creed NZ v Governor General [1981] 1 NZLR 172 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1098n
Table of Cases
lxxxv
Fauna and Flora case, Wai 262 (2011) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 901n The Canterbury Health Claim, Wai 2645 (filed on 17 February 2017) . . . . . . . . . . . . . . . . . . . . . . . 901n Trevethick v Ministry of Health [2008] NZHC 415 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 773n
Russia Case GKPI 11–2093 (2012) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 783n Sergiyenko v the Belgorod Regional Department of the Federal Bailiff Service, Judgment of the Oktyabrskiy District Court of Belgorod (17 April 2014) case no 2–1664/2014 . . . . . . . . . . . 274 Shitikov v Absent Ltd, Judgment of the Promyshlennyi District Court of Smolensk (18 December 2013) case no 2–3339/2013 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 275 Tsurenko v the Ministry of Education of the Omsk Region, Decision of Appeal of the Omskiy Oblast Court (18 December 2013) case no 33–8213/2013 . . . . . . . . . . . . . . . . . . . 276
South Africa Government of the Republic of South Africa and Others v Grootboom 2001 (1) SA 46 (CC) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53n Hoffman v South African Airways [2000] ZACC 17 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 774n
Spain Barcelona Provincial High Court, Judgment 202/2015 (12 May 2015) . . . . . . . . . . . . . . . . . . . . . . . 274n Judgment 619/2013 (10 October 2013), Civil Chamber of the Supreme Court . . . . . . . . . . . . . . . . . 274n
Switzerland M v R Swiss Federal Court judgment (2000) ATF 127 III 86 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 774n
England and Wales A Local Authority v ED & Ors [2013] EWCOP 3069 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 351n Archibald v Fife Council, [2004] UKHL 32 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 776n, 785n Barnes [2004] EWCA Crim 3246 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 913n Burnip v Birmingham City Council [2012] EWCA Civ 629 [1] . . . . . . . . . . . . . . . . . . . . . . . . . . . . 828n C (Adult: Refusal of Medical Treatment), Re [1994] 1 All ER 819 . . . . . . . . . . . . . . . . . . . . . . . . . . . 725n Findlay, In re [1985] AC 318 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1098n FirstGroup Plc v Paulley [2017] UKSC 4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 571–2, 923n J H Rayner (Mincing Lane) Ltd v Department of Trade and Industry and Others and related appeals; MacLaine Watson & Co Ltd v Department of Trade and Industry; MacLaine Watson & Co Ltd v International Tin Council (judgment of 26 Oct 1989) 81 ILR 670 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1160n JW, Re [2015] EWCOP 82 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 371n London Borough of Haringey v CM [2014] EWCOP B23 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1126n Lyons v Board of the State Hospital [2011] ScotCS CSOH_21 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 351n Morby (1882) 2 QBD 571 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 214n Ormond Street Hospital (GOSH) v Chris Gard and Others [2017] EWHC 972 (Fam) Declaration (11 April 2017) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 303 R (E) v Nottinghamshire Healthcare NHS Trust [2009] EWCA Civ 795 . . . . . . . . . . . . . . . . . . . . . . 351n R v Newham London Borough Council, ex parte Dada (1995) 1 FCR 248 . . . . . . . . . . . . . . . . . . . . 205n Rex v Bourne 3 All E R (1938) 615, 694–95 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 300 Ross v Ryanair Ltd & Anor [2004] EWCA Civ 1751 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 572 St George’s Healthcare NHS Trust v S [1999] Fam 26 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 223n Stott v Thomas Cook Tour Operators Ltd [2014] UKSC 15 . . . . . . . . . . . . . . . . . . . . . . . . . . 519n, 923n
United States ADA in Vande Zande v Wisconsin Dep’t of Admin 44 F 3d 538, 543 (7th Cir 1995) . . . . . . . . . . . . Addington v Texas, 441 US 418, 425 (1979). . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Alexander v Choate, 469 US 287, 301 (1985) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Am Council of Blind v Astrue, No 05–4696–WHA, 2009 WL 3400686 (N D Cal 20 October 2009) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
537n 414n 825n 825n
lxxxvi
Table of Cases
American Geophysical Union v Texaco Inc 60 F 3d 913, 918 (2d Cir 1994) . . . . . . . . . . . . . . . . . . . 897n Balfour, Gunthrie & Co Ltd v United States 90 F Supp 831 (1950) 17 ILR 323 . . . . . . . . . . . . . . . 1109n Bouvia v County of L A 195 Cal App 3d 1075, 241 Cal Rptr 239 (Cal App 1987) . . . . . . . . . . . . . . 304n Bowen v Am Hosp Ass’n 476 US 610 (1986) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 302, 304 Brown v Board of Education of Topeka 347 US 483 (1954) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 159 Bucks v Bell 247 US 200 (1927) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51n Burlington Industries, Inc v Ellerth 524 US 742 (1998) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 782n Buskirk v Apollo Metals 116 F Supp 2d 591, 598 (ED Pa 2000) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 910n Campbell v Acuff-Rose Music Inc 510 US 569, 590 (1994) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 897n Canterbury v Spence (1972) 464 F 2d 772 (DC Cir 1972) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 725n Colyar v Third Judicial District Court 469 F Supp 424 (D Utah 1979) . . . . . . . . . . . . . . . . . . . . . . . . 414 Cooper v CLP Corp 679 Fed Appx 851 (11 Cir 2017) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 782n Crabtree v Goetz 2008 WL 5330506 (M D Tenn 19 December 2008) . . . . . . . . . . . . . . . . . . . . . . . 537n DeAngelo v ConAgra Foods Inc 422 F 3d 1220 (11th Cir 2005) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 795n District of Columbia v Brooke 214 US 138, 149 (1909) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 413n Doe v Gallinot 486 F Supp 983, 991 (C D Cal 1979), aff’d, 657 F 2d 1017 (9th Cir 1981) . . . . . . . . . 413n Dred Scott v John Sandford 60 US 393 (1857) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 289 Dusky v United States 362 U.S. 402 (1960) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 419n Faragher v City of Boca Raton 524 US 775 (1998) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 782n Feist v Louisiana 730 F 3d 450 (2013) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 796 Fifth Circuit in Newberry v East Texas State University 161 F 3d 276 (5th Cir 1998) . . . . . . . . . . . . 795n Fleetwood v Harford Sys Inc 380 F Supp 2d 688 701 (D Md 2005) . . . . . . . . . . . . . . . . . . . . . . . . . 797n Foucha v Louisiana 504 US 71, 86 (1992) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 412n Georgia v McAfee, 385 S E 2d 651 (Ga 1989) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 304n Graham v Florida 130 S Ct 2011, 2034 (2010) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 418n Harrington v East Coast Area Health Board DEC—E/2002/001 (January 2002) . . . . . . . . . . . . . . . 795n Humphrey v Cady 405 U.S. 504, 509 (1972) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 412n Infant Doe v Bloomington Hospital 464 US 961 (1983) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 302, 304 Jackson v Indiana 406 US 715 (1972) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 412n Jacobson v Massachusetts 197 US 11 (1905) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51n, 413n Jones v State 396 S W 3d 558, 561–62 (Tex Crim App 2013) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 422n Jones v United States 463 US 354, 363 (1983) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 419n Khrapunskiy v Doar 12 N Y 3d 478 (2009) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 772n Kiphart v Saturn Corp 74 F Supp 2d 769, 774 (MD Tenn 1999) . . . . . . . . . . . . . . . . . . . . . . . . . . . 910n Knowles v Sherriff 460 Fed Appx 833, 836 (11th Cir. 2012) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 796n Lane et al v Brown et al United States District Court Case No 3:12–cv-00138–ST (2016) . . . . . . . . . 775n Lane v Candura 376 N E 2d 1232 (Mass App Ct 1978) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 304n Lawrence v Texas 539 US 558, 562 (2003) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 403 Lessard v Schmidt 349 F Supp 1078 (E D Wis 1972) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 413n Mackay v Bergstedt 801 P 2d 617 (Nev 1990) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 304n MC v Central Reg Sch Dist 81 F 3d 389, 396 (3d Cir 1996) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 696n Medellín v Texas (Medellín II) 128 S Ct 1346 (2008) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 138n, 1185n Messier v Southbury Training School (STS), 562 F Supp 2d 294 (D Conn 2008) . . . . . . . . . . . . . . . 537n Miller v Alabama 132 S Ct 2455, 2475 (2012) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 418n Mills Board of Education 348 F Supp 866, 868 (D D C 1972) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 678 Milton v Nicholson No 07–20201, 2007 WL 2695625 (5th Cir 2007) . . . . . . . . . . . . . . . . . . . 786, 787n O’Connor v Donaldson 422 US 563 (1975) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 412–13 Obergefell v Hodges 576 US ___(2015) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 159 Oberti v Board of Education of the Borough of Clementon School District, 995 F 2d 1204 (3d Cir 1993) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 671n Olmstead v L C 527 US 581 (1999) 138 F 3d 893 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 531, 537 Parents Involved in Community Schools v Seattle School District No 1 551 US 701 [2007] . . . . . . . . . 672n Pate v Robinson 383 U.S. 375, 385 (1966) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 419n Pennsylvania Association for Retarded Children (PARC) v Commonwealth 334 F Supp 1257, 1264 (E D Pa 1972) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 678 People v Berling 251 P 2d 1017 (Cal App 1953) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 419n
Table of Cases
lxxxvii
Peraza v State 467 S W 3d 508, 520 n 29 (Tex Crim App 2015) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 422n PGA Tour Inc v Martin 532 US 661, 204 F 3d 994 affirmed (2001) . . . . . . . . . . . . . . . . . . . . . . . . . . 915 Pierce v Society of Sisters 268 US 510 (1925) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 695n Quackenbush, In re 383 A 2d 785 (1978) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 304n Rasul v Bush 542 US 466 (2004) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1185n, 1225n Rogers v Whitaker (1992) 175 CLR 479 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 725n Roper v Simmons 543 U.S. 551, 577 (2005) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 418n Rorrer v City of Stow 743 F 3d 1025 (6th Cir 2014) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 795n Schindler v Schiavo (In re Schiavo) 780 So 2d 176, 180 (Fla Dist Ct App 2001) . . . . . . . . . . . . . . . . . 304 Specht v Patterson 386 US 605, 608 (1967) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 412n Stieberger v Apfel 134 F 3d 37, 39 (2d Cir 1997) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 825n Summers v Altarum Institute, Corp 13–1645, 2014 WL 243425 (4th Circuit 2014) . . . . . . . . . . . . . 795n T W by McCullough and Wilson v Unified Sch Dist No 259, Wichita, Kan, 43 IDELR 187, 136 F App’x 122 (10 Cir 2005) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 687n The Author’s Guild et al v Google Inc 05 Civ 8136 (DC) 2013 WL 6017130 (SDNY 14 November 2013) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 892–3 The Author’s Guild et al v HathiTrust et al 11 CV 6351 (HB) (SDNY 14 November 2013) . . . . . . . . . . 893 The Authors Guild et al v Google Inc 13–4829–cv (2d Cir 16 October 2015) . . . . . . . . . . . . . . . . . 892–3 The Authors Guild v HathiTrust 902 F Supp 2d 445 (SDNY 10 October 2012), aff’d in part in The Authors Guild v HathiTrust (2d Cir 10 June 2014) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 893 Townsend v Quasim (9th Cir 2003) 328 F3d 511 520 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 537n United States v Lyons 739 F 2d 994 (5th Cir 1984), 731 F 2d 243 (5th Cir 1984), cert denied 469 U.S. 930 (1984) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 418n United States v University Hospital 729 F 2d 144 (1984) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 302, 304 Workman v Frito-Lay 165 F 3d 460 (6th Cir 1999) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 795n
Table of Legislation ARGENTINA Occupational Risks Law (LRT) 1995 Art. 39(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 779 AUSTRALIA Commonwealth Electoral Act 1918 . . . . . 1069n Disability (Access to Premises—Buildings) Standards 2010 . . . . . . . . . . . . . . . . . . . . 884 Mental Health Act 2013 . . . . . . . . . . . . . . . . 352n Mental Health Act 2014 . . . . . . . . . . . . . . . . 352n AUSTRIA Federal Disability Act (BundesbehindertenG) (1990) . . . . . . . 135 Federal Equal Treatment Act (1993) BGBI 1993/100 § 19a . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 77n Migration Act 1958 . . . . . . . . . . . . . . . . . . . . 524n BELGIUM
Representation Agreement Act 1995 (British Colombia) . . . . . . . . . . . . . . . . 367n Sexual Sterilization Act 1928 (Alberta) . . . . . . . . . . . . . . . . . . . . . . . . . . 458 Vulnerable Persons Living with a Mental Disability Act 1996 (Manitoba, Canada) . . . . . . . . . . . . . . . 367n CHINA Compulsory Education Law 1986 . . . . . . . . 1056 Law on the Protection of the Rights and Interests of Women 1992 . . . . . . . . . . . . . . . . . . . . 1055 Mental Health Law 2013 . . . . . . . . . . . . . . . . 452 COLOMBIA Law 1412 of 2010 Art. 6 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 503 Art. 7 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 457 COOK ISLANDS
Cooperation Agreement between federal government and communities 2009 . . . . 138
Electoral Act 2004 . . . . . . . . . . . . . . . . . . . . . 855n
BULGARIA
COSTA RICA
Natural Persons and Support Measures (Draft) Act 2014 . . . . . . . . . . . . . . . . . . 352n Persons and Family Act 1949 s. 5 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 438n
Ley 9.379 para la Promoción de la Autonomía Personal de las Personas con Discapacidad (‘Law for the Promotion of Personal Autonomy of Persons with Disabilities’, Civil Procedure Code No 9,379, 2016) . . . . . . . . . . . . . 367n
CANADA Adult Guardianship and Trusteeship Act 2008 (Alberta) . . . . . . . . . . . . . . . . . . . . 367n Air Transportation Regulations (2017) s. 155(3)(b) . . . . . . . . . . . . . . . . . . . . . . 576n Canadian Association of Broadcasters Equitable Portrayal Code (2008) . . . . . 255 Charter of Rights and Freedoms (1982) . . . . . . . . . . . . . . . . . . . . . . . . . . 1052 s. 15 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101n s. 15(1) . . . . . . . . . . . . . . . . . . . . . . . . . 24, 150 Human Rights Act 1977 . . . . . . . . . . . . . . . 1052 Immigration and Refugee Protection Act 2001 s. 38(1)(a) . . . . . . . . . . . . . . . . . . . . . . . . . . 523 Decision-Making, Support and Protection to Adults Act, 2003 (Yukon) . . . . . . . . 367n Mental Health Care and Treatment Act 2006 Art. 35 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 900n Art. 36 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 900n
CROATIA Act on Protection of Persons with Mental Disorders 2014 . . . . . . . . . . . . 352n Constitution 1990 . . . . . . . . . . . . . . . . . . . . . . 306 Criminal Code 1997 . . . . . . . . . . . . . . . . . . . . 306 Law on Health Care Measures for the Exercise of the Right to Free Decision-Making About Giving Birth 1978 . . . . . . . . . . . . . . . . . 306 CYPRUS Persons with Disabilities Law 2000 . . . . . . . . . 59 Art. 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 59n Persons with Disabilities Law 2006 . . . . . . . 135n Sign Language Law (L 66 (I) 2006) . . . . . . 1073 DENMARK Health Act 2005 . . . . . . . . . . . . . . . . . . . . . . . 305
xc
Table of Legislation
FINLAND
INDIA
Constitution 2011 s. 16 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101n
Constitution 1950 . . . . . . . . . . . . . . . . . . . . . . 298 Art. 21 . . . . . . . . . . . . . . . . . . . . . . . . 298, 309 MTP Act 1971 . . . . . . . . . . . . . . . . . . . . . . . 309n PNDT Act 2004 . . . . . . . . . . . . . . . . . . . . . . 309n Rights of Persons with Disabilities Act 2016 . . . . . . . . . . . . . . . . . . . . . . . . 309n
FRANCE Exception to Copyright, Related Rights and the Rights of Database Producers for People with Disabilities 2017 s. 45a . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 888n GERMANY Basic Law 1949 Art. 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51n Art. 2(2) Sentence 1 . . . . . . . . . . . . . . . . . . . . . . . . 307 Copyright Act of 9 September 1965 (Federal Law Gazette I, 1273), as last amended by Article 1 of the Act of 20 December 2016 (Federal Law Gazette I 3037) . . . . . . . 888n Criminal Code 1998 ss 211 et seq . . . . . . . . . . . . . . . . . . . . . . . . . 307 ch VI s 211(1) . . . . . . . . . . . . . . . . . . . . . . 307n ch VI s 211(2) . . . . . . . . . . . . . . . . . . . . . . 307n s. 218 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 307n s. 218(a) . . . . . . . . . . . . . . . . . . . . . . . . . . . 307n s. 218(a)(2) . . . . . . . . . . . . . . . . . . . . . . . . . 307 Penal Code 1872 . . . . . . . . . . . . . . . . . . . . . . . 307 Pregnancy Conflict Act 1995, Criminal Code s 218(a)(2). . . . . . . . . . . 307 Pregnant Women’s and Families’ Amendment Act 1995 . . . . . . . . . . . . . . 307 GREECE Law 3699, Special Education of Individuals with Disabilities or Special Needs, 2008 Art. 4(3) . . . . . . . . . . . . . . . . . . . . . . . . . . . 685n Art. 6(5) . . . . . . . . . . . . . . . . . . . . . . . . . . . 685n HUNGARY Constitution 1949 . . . . . . . . . . . . . . . . . . . . . . 308 Art. XXXVI . . . . . . . . . . . . . . . . . . . . . . . 1071n Art. 70(5) . . . . . . . . . . . . . . . . . . . . . 846n, 848 Civil Code 2013 . . . . . . . . . . . . . . . . . . . . . . 645n Foetus Life Act 1992 . . . . . . . . . . . . . . . . . . . . 308 s. 6(1)(b) . . . . . . . . . . . . . . . . . . . . . . . . . . 308n s. 6(2)(3) . . . . . . . . . . . . . . . . . . . . . . . . . . 308n s. 6(4)(b) . . . . . . . . . . . . . . . . . . . . . . . . . . 308n Health Act 1997 . . . . . . . . . . . . . . . . . . . . . . . 308 s. 187(4) . . . . . . . . . . . . . . . . . . . . . . . . . . . 308n ss 183–84 . . . . . . . . . . . . . . . . . . . . . . . . . . 308n
IRAN Constitution 1979 . . . . . . . . . . . . . . . . . . . . 1181n Art. 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1180 Art. 4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1180 IRELAND (REPUBLIC OF IRELAND) Assisted Decision-Making (Capacity) Bill 2013 . . . . . . . . . . . . . . . . . . . . . . . . 352n Assisted Decision-Making (Capacity) Act 2015 . . . . . . . . . . . . . . . . . . 367n, 373n Education Act 2004 . . . . . . . . . . . . . . . . . . . 685n Human Rights and Equality Commission Act 2014 s. 42(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101n ISRAEL Capacity and Guardianship (Amendment No 18) Law, 5776–2016 . . . . . . . . . . . 367n ITALY Basaglia Law 1978 . . . . . . . . . . . . . . . . . . . . . . 553 Law No.68/1999 . . . . . . . . . . . . . . . . . . . . . . . 791 Law no 104 5 February 1992 . . . . . . . . . . . . 685n Mariotti Law 1968 . . . . . . . . . . . . . . . . . . . . . 553 JAPAN Basic Act for Persons with Disabilities 1970 . . . . . . . . . . . . . . . . . . . 886 KENYA Children’s Act, No 8 of 2001 s. 4(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 308 s. 12 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 308 Constitution 2010 . . . . . . . . . . . . . . . . . . . . . . 307 Art. II . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 308n Art. 26 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 307n Art. 26(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 308 Art. 26(4) . . . . . . . . . . . . . . . . . . . . . . . . . . . 308 Art. 28 . . . . . . . . . . . . . . . . . . . . . . . . . . 518n Art. 43(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 308 Art. 54(1)(c) . . . . . . . . . . . . . . . . . . . . . . . 518n LITHUANIA Criminal Code 2000 Art. 142 . . . . . . . . . . . . . . . . . . . . . . . . . . . 310n
Table of Legislation
xci
Constitution 1957 Art. 8(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 1182 Art. 153(1) . . . . . . . . . . . . . . . . . . . . . . . . . 1182
Criminal Code 2005 . . . . . . . . . . . . . . . . . . . . 310 Part II . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 310n s. 28 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 310n §§144–54 . . . . . . . . . . . . . . . . . . . . . . . . . 310n ss 150–53 . . . . . . . . . . . . . . . . . . . . . . . . . . 311n s. 154 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 310n §§155–60 . . . . . . . . . . . . . . . . . . . . . . . . . 310n §§161–78 . . . . . . . . . . . . . . . . . . . . . . . . . 310n Constitution 1992 Art. 15(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 310n
NEW ZEALAND
SOUTH AFRICA
Public Health and Disability Act 2000 s. 4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 901
Broad-Based Black Economic Empowerment Act 53 of 2003 . . . . . . . 791 Choice on Termination of Pregnancy Act 1996 . . . . . . . . . . . . . . . . . . . . . . . . . 306 Art. 2(1)(a) . . . . . . . . . . . . . . . . . . . . . . . . . 307n Constitution 1996 . . . . . . . . . . . . . . . . . . . . . 101n Art. 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92n Art. 7 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92n Art. 10 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92n Art. 35 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92n Art. 36 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92n Art. 39 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92n Art. 165 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92n Art. 181 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92n Art. 196 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92n s. 21 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 527n Sch 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92n Domestic Violence Act 1998 . . . . . . . . . . . . 1058 Mental Health Care Act 2002 . . . . . . . . . . . 1058
FORMER YUGOSLAV REPUBLIC OF MACEDONIA Law on the Prevention and Protection Against Discrimination 2010 Art. 12 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 77n MALAYSIA
NORWAY Anti-Discrimination and Accessibility Act 2008 . . . . . . . . . . . . . . . . . . . . . . . . . 126 s. 12 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 126n s. 13 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 126 PARAGUAY Act No 978/96 Art. 6(3) . . . . . . . . . . . . . . . . . . . . . . . . . . . 514n PERU Act No 29478 2009 . . . . . . . . . . . . . . . . . . . 1056 Act No 29524 on Deafblind Persons 2010 . . . . . . . . . . . . . . . . . . . . . 1056 Administrative Decision No 0269–2009 of the National Identity and Civil Status Registry (RENIEC) . . . . . . . . . . 1056 Finance Act 2011 . . . . . . . . . . . . . . . . . . . . . 1056 RUSSIA Civil Code of 1994 Art. 29 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 438n SAUDI ARABIA Basic Law of Governance 1992 Art. 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1179n SERBIA Constitution 2006 . . . . . . . . . . . . . . . . . . . . . . 298 Guide Dog Assistance Law 2015 . . . . . . . . . . 577 SINGAPORE Mental Capacity Act 2008 . . . . . . . . . . . . . . 352n Model Act on reasons and procedure for limiting and protection of certain rights and liberties, 2013 . . . . . 352n SLOVAKIA Act on Artificial Termination of Pregnancy 1986 . . . . . . . . . . . . . . . . . 311
SOUTH KOREA Anti-Discrimination against and Remedies for Persons with Disabilities Act 2008 Art. 26 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 393 Culture and Arts Promotion Act 2016 . . . . . 886 Immigration Control Act 1992 Art. 11 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 514n Mother and Child Health Act 1986 Art. 14(1)(1) . . . . . . . . . . . . . . . . . . . . . . . . 310 Enforcement Decree . . . . . . . . . . . . . . . . . . 310 Art. 15 . . . . . . . . . . . . . . . . . . . . . . . . . . . 310 Art. 15(2) . . . . . . . . . . . . . . . . . . . . . . . . . 310 Nationality Processing Guidelines 2013 Art. 7 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 526n Welfare of Disabled Persons Act 1989 . . . . . 886 SPAIN Art. 26/2011 . . . . . . . . . . . . . . . . . . . . 311, 1053 Act 51/2003 on Equal Opportunities, Non-discrimination and Universal Access for People with Disabilities . . . . 127
xcii
Table of Legislation
Código Civil (Civil Code) 1889 Art. 200 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 501 Código Penal (Penal Code) 1995 Art. 156 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 501 Sexual and Reproductive Health Act (Organic Act 2/2010) . . . . . . . . . . . 311
Art. 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 900n Art. 57 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 900n Special Educational Needs and Discrimination Act (SENDA) 2001 . . . . . . . . . . . . . . . . . . . 703n
UGANDA
UNITED STATES (US)
Constitution 1995 Art. 22(1) . . . . . . . . . . . . . . . . . . . . . . . . . . 309n Art. 22(2) . . . . . . . . . . . . . . . . . . . . . . . . . . 309n UNITED ARAB EMIRATES (UAE) Civil Code 1985 . . . . . . . . . . . . . . . . . . . . . . . 856 Constitution 1971 . . . . . . . . . . . . . . . . . . . . . . 856 UNITED KINGDOM (UK) Abortion Act 1967 . . . . . . . . . . . . . . . . . . . . . 300 s. 1(1)(d) . . . . . . . . . . . . . . . . . . . . . . . . . . . 300 Adults with Incapacity (Scotland) Act 2000 s. 1(5) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 367n s. 1(6) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 367n Copyright (Visually Impaired Persons) Act 2002 (CVIPA 2002) . . . . . . . . . . . . 891 Copyright, Designs, and Patents Act 1988 ss 31A-31F . . . . . . . . . . . . . . . . . . . . 888n, 892 ss 81–83 . . . . . . . . . . . . . . . . . . . . . . . . . . . 892n Criminal Procedure (Insanity) Act 1964 . . . 361n Disability Discrimination Act 1995 . . . . . . . . . . . . . . . . 57, 572, 703n Education Act 1981 . . . . . . . . . . . . . . . . . . . 687n Equality Act 2010 . . . . . . . . . . . . 257, 769n, 883 s. 29(7) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 572 s. 149 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101n Art. 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 782 Art. 26 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 782 Human Fertilisation and Embryology Act 1990 s. 37 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 300 Human Rights Act 1998 . . . . . . . . . . . . . . 1158n Mental Capacity Act 2005 (England and Wales) . . . . . . . . . . . . . . . 352 s. 1(3) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 367n s. 2(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 354n s. 3 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 726 s. 3(2) . . . . . . . . . . . . . . . . . . . . . . . 352n, 367n s. 5 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 365n Mental Capacity Act (Northern Ireland) 2016 SI 2016\18 . . . . . . . . . . . . . . . . . . 352n s. 5 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 367n s. 9 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 365n Mental Health Act 1983 . . . . . . . . . . . . . . . . 900n Mental Health (Care and Treatment) (Scotland) Act 2003 Pt. 7 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 900n
Title 17 of the United States Code (U.S.C) § 107 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 892n § 121 . . . . . . . . . . . . . . . . . . . . . . . 888n, 893n Title 20 of the United States Code (U.S.C) § 1401(3)(A) . . . . . . . . . . . . . . . . . . . . . . . 824n Title 42 of the United States Code (U.S.C) § 423(d)(1)(A) . . . . . . . . . . . . . . . . . . . . . . 824n § 12101(7) . . . . . . . . . . . . . . . . . . . . . . . . . 893n Air Carrier Access Act 1986 . . . . . . . . . . . . . . 577 Americans with Disabilities Act 1990 . . . . . . . 78, 531n, 532, 537, 618, 625n, 661n, 663n, 776, 797, 910, 915 §§ 12101–117, 12201–213 . . . . . . . . . . . 769n § 12102 et seq . . . . . . . . . . . . . . . . . . . . . . 703n § 12102 . . . . . . . . . . . . . . . . . . . . . 663n, 665n s. 12111 . . . . . . . . . . . . . . . . . . . . . . . . . . . 682n § 12112(b)(4) . . . . . . . . . . . . . . . . . . . . . . . 73n Title II . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 537 Title III . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 79n ADA Amendments Act 2008 . . . . . . . . . . . . 661n Copyright Code s. 121 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 892 Constitution 1788 14th amendment . . . . . . . . . . . . . . . . . . . . 695n Health Insurance Portability and Accountability Act (HIPPA) 64 Federal Register 53, 211 (14 August 2002) . . . . . . . . . . . 625n, 626n Individuals with Disabilities Education Act (IDEA) 1990 . . . . . . . . 664n, 675–6, 677n, 684n, 687n Part C . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 665n § 1401(3) . . . . . . . . . . . . . . . . . . . . . . . . . . 676n § 1401(3)(A)(i) . . . . . . . . . . . . . . . . . . . . . 665n § 1401(9) . . . . . . . . . . . . . . . . . . . . . . . . . . 675n § 1401(14) . . . . . . . . . . . . . . . . . . . . . . . . . 685n § 1412(a)(5) . . . . . . . . . . . . . . . . . . . . . . . 687n § 1412(a)(10)(C)(ii) . . . . . . . . . . . . . . . . . 696n § 1414(d)(3)(A) . . . . . . . . . . . . . . . . . . . . 676n § 1415 (k) . . . . . . . . . . . . . . . . . . . . . . . . . 677n § 1431 et seq. . . . . . . . . . . . . . . . . . . . . . . 665n § 6311 (c)(4)(a)(i)(I)(bb) . . . . . . . . . . . . . 677n § 6311 (b)(2)(B)(xi)(III) . . . . . . . . . . . . . 677n 1996 New Jersey Genetic Privacy Act, NJ Rev Stat § 178:30–12 (1996) . . . . 626n
Table of Legislation Personal Responsibility and Work Opportunity Act 1996 . . . . . . . . . . . . . 525n Privacy Act 1974 5 USC § 552(a) (2000) . . . . . . . . . . . . . . . . . . . . 625n, 626n Rehabilitation Act 1973 . . . . . . . . . . . . . . . . . . 78 s. 504 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 703n Supported Decision-Making Agreement Act 2015 (Texas) SB No 1881 2015 . . . . . . . . . . . . . . . . . 367n URUGUAY Constitution 1830 . . . . . . . . . . . . . . . . . . . . . . 515 Art. 37 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 515n Art. 80 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 515n EUROPEAN UNION DIRECTIVES Directive 2013/32/EU of the European Parliament and of the Council of 26 June 2013 on common procedures for granting and withdrawing international protection . . . . . . . . . . . . 526n Directive 2005/29/EC of the European Parliament and of the Council of 11 May 2005 concerning unfair business-to-consumer commercial practices in the internal market and amending Council Directive 84/450/ EEC, Directives 97/7/EC, 98/27/ EC and 2002/65/EC of the European Parliament and of the Council and Regulation (EC) No 2006/2004 of the European Parliament and of the Council (‘Unfair Commercial Practices Directive’) (Text with EEA relevance) Arts 5–9 . . . . . . . . . . . . . . . . . . . . . . . . . . . 377n Directive 2001/29/EC of the European Parliament and of the Council of 22 May 2001 on the harmonisation of certain aspects of copyright and related rights in the information society Art. 5(3)(b) . . . . . . . . . . . . . . . . . . 888n, 891n Directive 2000/78/EC of 27 November 2000 establishing a general framework for equal treatment in employment and occupation . . . . 38, 61–2, 65n, 78, 96, 767, 769n Art. 2(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65n Art. 2(3) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 76n Art. 5 . . . . . . . . . . . . . . . . . . . . 76n, 78n, 793n Art. 5(3) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 767
xciii
Recital 17 . . . . . . . . . . . . . . . . . . . . . . . . . . . 767 Recital 20 . . . . . . . . . . . . . . . . . . . . . . . . . . . 767 Recital 21 . . . . . . . . . . . . . . . . . . . . . . . . . . . 767 Directive 96/9/EC of the European Parliament and of the Council of 11 March 1996 on the legal protection of databases . . . . . . . . . . . . . 896n Art. 1(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 896n Directive 95/46/EC of the European Parliament and of the Council of 24 October 1995 on the protection of individuals with regard to the processing of personal data and on the free movement of such data . . . . . . . . . . . 614n, 936n, 938, 941 Art. 6 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 941n Art. 7 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 941 Art. 8 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 942n Art. 10 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 941n Art. 11 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 941n Art. 11(2) . . . . . . . . . . . . . . . . . . . . . . . . . . 941n Recitals 1–11 . . . . . . . . . . . . . . . . . . . . . . . 938n EUROPEAN UNION REGULATIONS General Data Protection Regulation (GDPR) Regulation (EU) 2016/679 . . . . . . . . . . . . 614, 626–7, 936n, 938, 941–2 Art. 4(1) . . . . . . . . . . . . . . . . . . . . . . . . . . . 626n Art. 4(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 626n Art. 5 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 941n Art. 5(1)(a) . . . . . . . . . . . . . . . . . . . . . . . . . 626n Art. 5(1)(b) . . . . . . . . . . . . . . . . . . . . . . . . 626n Art. 5(1)(c) . . . . . . . . . . . . . . . . . . . . . . . . . 626n Art. 5(1)(d) . . . . . . . . . . . . . . . . . . . . . . . . 626n Art. 5(1)(e) . . . . . . . . . . . . . . . . . . . . . . . . . 626n Art. 5(1)(f ) . . . . . . . . . . . . . . . . . . . . . . . . . 626n Art. 5(2) . . . . . . . . . . . . . . . . . . . . . . . . . . . 626n Art. 6 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 941 Art. 9 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 942n Art. 12 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 941n Art. 13 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 941n Art. 14 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 941n Art. 14(5) . . . . . . . . . . . . . . . . . . . . . . . . . . 941n Art. 89 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 942n Recital 35 . . . . . . . . . . . . . . . . . . . . . . . . . . 942n Recital 54 . . . . . . . . . . . . . . . . . . . . . . . . . . 942n Regulation (EU) No 1303/2013 . . . . . . . . . 539n Regulation (EU) No 181/2011 Art. 17 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 576n Regulation (EU) No 1177/2010 Art. 15 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 575n
xciv
Table of Legislation
Regulation (EC) 1371/2007 of the European Parliament and of the Council of 23 October 2007 on rail passengers’ rights and obligations [2007] OJ L 315/14 Art. 25 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 575n Regulation (EC) No 1107/2006 . . . . 520n, 570, 575n, 923 Art. 12 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 575n Regulation (EC) No 2006/2004 Art. 17 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 576n Regulation (EC) No 332/97 . . . . . . . . . . . . . 937
Recital 13 . . . . . . . . . . . . . . . . . . . . . . . . . . 937n Recital 14 . . . . . . . . . . . . . . . . . . . . . . . . . . 937n Recital 15 . . . . . . . . . . . . . . . . . . . . . . . . . . 937n Art. 10 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 937n Art. 13 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 937n Art. 14 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 937n Art. 15 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 937n Art. 18 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 937n Regulation (EC) No 97/281 . . . . . . . . . . . . 937n Art. 9 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 937n Art. 13 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 937n Ch V . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 937n
Preamble ( a) Recalling the principles proclaimed in the Charter of the United Nations which recognize the inherent dignity and worth and the equal and inalienable rights of all members of the human family as the foundation of freedom, justice and peace in the world, ( b) Recognizing that the United Nations, in the Universal Declaration of Human Rights and in the International Covenants on Human Rights, has proclaimed and agreed that everyone is entitled to all the rights and freedoms set forth therein, without distinction of any kind, ( c) Reaffirming the universality, indivisibility, interdependence and interrelatedness of all human rights and fundamental freedoms and the need for persons with disabilities to be guaranteed their full enjoyment without discrimination, ( d) Recalling the International Covenant on Economic, Social and Cultural Rights, the International Covenant on Civil and Political Rights, the International Convention on the Elimination of All Forms of Racial Discrimination, the Convention on the Elimination of All Forms of Discrimination against Women, the Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, the Convention on the Rights of the Child, and the International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families, ( e) Recognizing that disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others, ( f) Recognizing the importance of the principles and policy guidelines contained in the World Programme of Action concerning Disabled Persons and in the Standard Rules on the Equalization of Opportunities for Persons with Disabilities in influencing the promotion, formulation and evaluation of the
policies, plans, programmes and actions at the national, regional and international levels to further equalize opportunities for persons with disabilities, ( g) Emphasizing the importance of mainstreaming disability issues as an integral part of relevant strategies of sustainable development, ( h) Recognizing also that discrimination against any person on the basis of disability is a violation of the inherent dignity and worth of the human person, (i) Recognizing further the diversity of persons with disabilities, (j) Recognizing the need to promote and protect the human rights of all persons with disabilities, including those who require more intensive support, (k) Concerned that, despite these various instruments and undertakings, persons with disabilities continue to face barriers in their participation as equal members of society and violations of their human rights in all parts of the world, (l) Recognizing the importance of international cooperation for improving the living conditions of persons with disabilities in every country, particularly in developing countries, (m) Recognizing the valued existing and potential contributions made by persons with disabilities to the overall well-being and diversity of their communities, and that the promotion of the full enjoyment by persons with disabilities of their human rights and fundamental freedoms and of full participation by persons with disabilities will result in their enhanced sense of belonging and in significant advances in the human, social and economic development of society and the eradication of poverty, (n) Recognizing the importance for persons with disabilities of their individual autonomy and independence, including the freedom to make their own choices,
lord
2
Preamble
(o) Considering that persons with disabilities should have the opportunity to be actively involved in decision-making processes about policies and programmes, including those directly concerning them,
of the United Nations and observance of applicable human rights instruments are indispensable for the full protection of persons with disabilities, in particular during armed conflicts and foreign occupation,
(p) Concerned about the difficult conditions faced by persons with disabilities who are subject to multiple or aggravated forms of discrimination on the basis of race, colour, sex, language, religion, political or other opinion, national, ethnic, indigenous or social origin, property, birth, age or other status,
(v) Recognizing the importance of accessibility to the physical, social, economic and cultural environment, to health and education and to information and communication, in enabling persons with disabilities to fully enjoy all human rights and fundamental freedoms,
(q) Recognizing that women and girls with disabilities are often at greater risk, both within and outside the home of violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation,
(w) Realizing that the individual, having duties to other individuals and to the community to which he or she belongs, is under a responsibility to strive for the promotion and observance of the rights recognized in the International Bill of Human Rights,
(r) Recognizing that children with disabilities should have full enjoyment of all human rights and fundamental freedoms on an equal basis with other children, and recalling obligations to that end undertaken by States Parties to the Convention on the Rights of the Child, (s) Emphasizing the need to incorporate a gender perspective in all efforts to promote the full enjoyment of human rights and fundamental freedoms by persons with disabilities, (t) Highlighting the fact that the majority of persons with disabilities live in conditions of poverty, and in this regard recognizing the critical need to address the negative impact of poverty on persons with disabilities, (u) Bearing in mind that conditions of peace and security based on full respect for the purposes and principles contained in the Charter
( x) Convinced that the family is the natural and fundamental group unit of society and is entitled to protection by society and the State, and that persons with disabilities and their family members should receive the necessary protection and assistance to enable families to contribute towards the full and equal enjoyment of the rights of persons with disabilities, (y) Convinced that a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities will make a significant contribution to redressing the profound social disadvantage of persons with disabilities and promote their participation in the civil, political, economic, social and cultural spheres with equal opportunities, in both developing and developed countries,
1. Introduction 2. Background and Travaux Préparatoires 2.1 Legal Effect of Preambles under Public International Law 2.2 The States Parties to the Present Convention 3.1 Paragraph (a) 3.2 Paragraph (b) 3.3 Paragraph (c) 3.4 Paragraph (d) 3.5 Paragraph (e) 3.6 Paragraph (f ) 3.7 Paragraph (g) 3.8 Paragraph (h)
lord
3 4 7 8 8 9 10 11 12 14 16 17
Preamble 3.9 3.10 3.11 3.12 3.13 3.14 3.15 3.16 3.17 3.18 3.19 3.20 3.21 3.22 3.23 3.24 3.25
Paragraph (i) Paragraph (j) Paragraph (k) Paragraph (l) Paragraph (m) Paragraph (n) Paragraph (o) Paragraph (p) Paragraph (q) Paragraph (r) Paragraph (s) Paragraph (t) Paragraph (u) Paragraph (v) Paragraph (w) Paragraph (x) Paragraph (y)
3 18 19 19 20 21 22 23 24 25 27 27 28 29 31 31 32 32
1. Introduction The preamble to the Convention on the Rights of Persons with Disabilities (CRPD) consists of twenty-five paragraphs, and is thus half the length of the operative provisions of the treaty. Of the core human rights conventions, it is by far the longest preamble among them. Preambles to human rights treaties, as with all treaty preambles, are introductory statements that set out the treaty’s purpose, underlying philosophy, drafters’ intent, and historical evolution.1 The preamble facilitates treaty interpretation, as noted by the International Criminal Court Appeals Chamber in its observation that the purposes of a treaty may be gleaned from ‘the wider aims of the law as may be gathered from its preamble and general tenor of the treaty’.2 And while preambular paragraphs may not, on account of their characteristic hortatory language, confer specific rights and obligations, as explained in the ICRC Commentary to Geneva Convention IV, the preamble ‘frequently facilitates the interpretation of particular provisions which are less precise than they should be, by its indication of the general idea behind them and the spirit in which they should be applied’.3 And finally, as exemplified by the Maartens Clause—an 1 Art 31(1) 1969 Vienna Convention on the Law of Treaties 1155 UNTS 331, 340. See also Gyorgy Haraszti, Some Fundamental Problems of The Law of Treaties (Akademiai Kiado 1973) 106–07. The term ‘preamble’ derives from the late Middle English, specifically, Medieval Latin ‘praeambulum’ and from Late Latin ‘praeambulus’ meaning ‘going before’. Its meaning in legal terms is a clause, or group of clauses, at the beginning of an agreement that sets forth its meaning, intention, and/or the reasons for its adoption and is thus helpful in its interpretation. See The New Shorter Oxford English Dictionary on Historical Principles vol 2 (OUP 1993) 2323. See also Bryan A Garner, ‘Preamble’, Black’s Law Dictionary (9th edn, West 2009). 2 Situation in Democratic Republic of the Congo, Judgment on the Prosecutor’s Application for Extraordinary Review of Pre-Trial Chamber I’s 31 March 2006 Decision Denying Leave to Appeal, ICC-01/04-168 (13 July 2006) para 33. The Vienna Convention on the Law of Treaties (VCLT) provides that international agreements are to be interpreted in accordance with the ordinary meaning of their terms, in their context, and in light of their object and purpose. See Art 31(1) VCLT. Further, the negotiating history of an agreement is a ‘supplementary’ means of interpretation, to be used when the meaning of a provision is ambiguous or obscure. Art 32 VCLT. 3 ICRC, Commentary to the Convention (IV) relative to the Protection of Civilian Persons in Time of War, Preamble (ICRC 1958). See also ICRC, Commentary to Convention (IV) relative to the Protection of Civilian Persons in Time of War, Preamble (ICRC 2016).
lord
4
Preamble
international humanitarian law doctrine according to which, in cases not covered by the law in force, the human person remains under the protection of the principles of humanity and the dictates of the public conscience—preambles can contribute to the crystallization of an international rule. The Martens Clauses was elevated from its preambular position into an operative article in a later treaty, demonstrating that paragraphs housed in the preamble can be elevated to operative status. Both the Geneva Conventions of 1949 and the two Protocols additional thereto of 1977 restated the Martens Clause. Furthermore, the 1977 Diplomatic Conference which led to the drafting of Additional Protocol I underlined the continuing importance of the Martens Clause by moving it from the preamble, where it first appeared in the 1973 draft, to a substantive provision of the Protocol. Undoubtedly, therefore, the Martens Clause is still relevant.4
2. Background and Travaux Préparatoires The basis for what became the preamble was a Mexican working paper, the proposal developed to ensure the success of the first meeting of the Ad Hoc Committee on the basis that its mandate was to consider ‘proposals’.5 Absent a proposal being tabled, there was a risk, so the Mexican delegation reasoned, that an opposing delegation might suggest that the Committee had no work to perform within its mandate, pursuant to the UNGA resolution that established it. A general consensus emerged as to the basic elements of the preamble, as evidenced by paragraphs common to early proposals by Mexico, New Zealand, and as reflected in the Bangkok draft.6 All three documents supported the reflection in the preamble of: (1) the idea that existing human rights standards are applicable to people with disabilities; (2) the value of existing human rights standards to people with disabilities; (3) the value of disability-specific instruments, such as the Standard Rules;7 (4) the notion that human rights violations against people with disabilities persist; and (5) the notion that states have a responsibility to eliminate barriers to the full and equal participation and enjoyment of human rights by people with disabilities.8 Further, in the Bangkok draft’s
4 Rupert Ticehurst, ‘The Martens Clause and the Laws of Armed Conflict’ (1997) 317 International Review of the Red Cross 125. 5 ‘Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities’, Working Paper, A/AC.265/WP 1 (2002) [Mexico Draft]. 6 The Bangkok draft acknowledges that ‘Paragraphs (a) to (k) are derived from the Working paper by Mexico, A/AC265/WP1, Mexican Draft, with changes only to paragraph (g). Paragraphs (l) and (m) are derived from the Compilation of the results of the working groups of the Seminar, Américas regional seminar and workshop on norms and standards related to the rights of persons with disabilities and development, Quito, Ecuador, 9–11 April 2003. Paragraphs (n) to (u) were added by the Bangkok meeting.’ Regional Workshop Towards a Comprehensive & Integral International Convention on Protocol & Promotion of the Rights & Dignity of Persons with Disabilities, 14–17 October 2003, ‘Bangkok Draft: Proposed Elements of a Comprehensive and Integral International Convention to Promote and Protect the Rights of Persons with Disabilities’ UN Doc A/AC265/2003/CRP/ 10 (2003); ‘New Zealand’s View of a Convention on the Rights of Disabled People’, 28 November 2003 [New Zealand Proposal]; Mexico Draft. 7 UNGA Res 48/96 (20 December 1993), Annex, ‘Standard Rules on the Equalization of Opportunities for Persons with Disabilities’. [Standard Rules]. 8 A side-by-side comparison of the three contributions together with an analysis appears in the following document: Landmine Survivors Network, ‘A comparative analysis of the Mexican, Bangkok and New Zealand Contributions to the UN Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (December 2003) [LSN Comparative Analysis].
lord
Preamble
5
elaborate preamble, included were core issues that were eventually addressed not only in the adopted preamble, but also in the operative parts of the treaty text. These included: (1) independent living; (2) autonomous decision-making by people with disabilities; (3) gender and disability; (4) particularly marginalized groups of people with disabilities; and (5) international cooperation.9 The Mexico and Bangkok proposals also referenced inclusion of paragraphs in the preamble, acknowledging the social circumstances that contribute to increase the incidence of disability, the role of persons with disabilities and NGOs in disability rights awareness- raising, and the interrelationship between poverty and disability.10 The New Zealand proposal noted that some issues are ‘more adequately dealt with in other settings’, an implicit criticism of prevention-oriented language found in the preamble to the Mexican draft.11 Some of the more substantive elements of the preamble—and those that most closely addressed core conceptual issues of human rights in the context of disability—were not addressed in the 2004 Working Group draft, but were added throughout the course of the negotiations.12 That said, some of the most substantive discussions during the negotiations occurred around language housed in the preamble of the adopted text. Many of these provisions were connected to operative paragraphs in the Convention that would eventually make their way into the preamble, either as language reinforcing of those operative articles or as language deemed too controversial or unsuitable for reflection in the articles of the CRPD. The final text of the CRPD preamble gives a flavour for nearly all of the core conceptual issues arising during the negotiation of the Convention. Of major consequence was the placement of language reflecting the social model of disability, not only embedded in article 1 (purpose) but also in paragraph (e) of the preamble, which came in large part as a result of Australian Disabled Person’s Organizations (DPOs) working together with their government delegation. Of special interest are those provisions that did not make their way into the final preambular text, but were included in early drafts and proposals put forward during the negotiations. Their deliberate excision in some instances lends insights into the intention of the drafters in some important respects. First, a point of strident protest among some members of civil society, was the decision to avoid mention of the contested and certainly outmoded non-binding guidelines adopted in 1991 along with the Standard Rules, namely, the Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Healthcare (MI Principles). Inputs provided in an online consultation held by UN Department of Economic and Social Affairs (UN DESA), a highly novel approach to participation in treaty consultations at the time, sums up well the basis of the objection to the Mexican proposed preambular language: While the citations of previously agreed texts is generally good, many organizations of persons concerned with abuse of psychiatric practices find the citation of 1971 Declaration on the Rights of Mentally Retarded Persons and the 1991 Principles for the Protection of Persons with Mental 10 11 Bangkok Draft, at Preamble. ibid. See New Zealand Proposal at ‘Scope’. The position of Aust that a ‘preamble should reflect the main treaty text and not the other way around’ and, further, that detailed consideration of the preamble ought to take place towards the end of negotiations when the parameters of the treaty are clear is a sound one. But as the CRPD process bears out, early formulation of standard recitals in a preamble can occur at any point in the process. His position on the relatively unimportant role of the preamble, even against final clauses of a treaty, may be correct for the standard recitals, but even that proposition is open to question in the CRPD context. Anthony Aust, Modern Treaty Law and Practice (2nd edn, CUP 2007) 426. 9
12
lord
6
Preamble
Illness and the Improvement of Mental Healthcare to be inappropriate since they contain principles that are no longer considered fair or correct.13
A second omission with some significance concerned proposals to include in the preamble language referencing the prevention of disability and also text emphasizing the interrelationship between poverty and conflict and correspondingly high rates of disability. For instance, the Venezuelan proposal, a response to the Mexican treaty proposal, included the following three paragraphs: • Concerned at the fact that extreme poverty, marginalization, social exclusion, war and underdevelopment contribute to the existence of high disability rates, since the great majority of persons with disabilities live in developing countries, • Bearing in mind that, in many cases, disability can be prevented by creating conditions of equity and thus by increasing the level of development and quality of life of the world’s people, • Recognizing that the strengthening of international peace and security and the prevention of conflict help reduce the high rates of disability in the world.14
Language concerning prevention of disability did not make its way into the preamble and was roundly criticized, especially by the disability community.15 The draft language focused on the prevention of disability reflected the early thinking in the process and the traditional view that conflates disability rights and prevention of disability. Proponents were quickly disabused of the idea, not only by DPOs but likewise by delegates representing countries with more developed disability rights legislation. Finally, it was the preamble, not any of the operative provisions of the treaty—that resulted in a last minute delay of the final text’s adoption at the eighth, and final, session of the Ad Hoc Committee. At the behest of the United States, the offending text for paragraph (u) was put to the vote, creating the need to move hundreds of delegates from conference room 4 to an adjacent hall in the basement of UN Headquarters equipped with voting machinery but without, however, accessibility features which had been incrementally made to enhance 1950s-era barriers. Following the vote tabulation, the way was cleared for the Ad Hoc Committee to adopt the finalized treaty text and send it onwards ultimately for a vote of the whole General Assembly in December 2006. 13 Ad Hoc Committee on a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities, New York, 16–27 June 2003, ‘Compilation of Proposals for a Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/CRP13 Add 1 and 2 (2003) [2003 June Compilation]. 14 Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, ‘Draft submitted by the Government of the Bolivarian Republic of Venezuela’ UN Doc A/AC265/2003/WP1 (2003) [Venezuelan Draft]. 15 In response to draft text for Preamble (m) (‘Committed to take the necessary steps to reduce the causes that originate or worsen certain disabilities;’), a participant in the online DESA consultation captures well the sentiment expressed against coverage of disability prevention in the treaty:
While prevention is an important issue in a larger context, it should not be included in a Convention on disabilities, which is applied to persons who already have a disability. This text opens the door to a large number of steps, including eugenics, that have serious social and moral implications, as well as linking the Convention to large and often intractable issues like armed conflict. This paragraph should be deleted or the emphasis should be on mitigating the factors that worsen certain disabilities. See 2003 June Compilation.
lord
Preamble
7
Unlike all other chapters in this volume, which provide a lengthy discussion of the travaux in a distinct section, discussions of the travaux are incorporated into the commentary to the various paragraphs of the preamble in this chapter.
2.1 Legal Effect of Preambles under Public International Law The general position in international law as to the legal effect of a preamble is, in accordance with article 31 of the Vienna Convention on the Law of Treaties (Vienna Convention), it forms the context within which the treaty should be interpreted and applied.16 Thus, the Appeals Chamber of the International Criminal Court has stated that when interpreting treaties, the purposes may be discerned from ‘the wider aims of the law as may be gathered from its preamble and general tenor of the treaty’.17 The commentary on the preamble by Landmine Survivors Network during the CRPD drafting provides additional texture to the overall work that a preamble does: ‘[T]he preamble provides a useful historical context and the rationale for introducing a new instrument into the body of international law.’18 The more comprehensive view is that the explanatory power of the preamble is significant and tells a story about the treaty’s underlying rationale, the general tenor and conceptual undergirding of its text, and the international context within which the treaty was adopted. Its greatest effect is the power of the preamble to give traction to norm development and evolution. This is apparent even in the first decade of the CRPD’s entry into force. In this regard, the oft-cited proposition that the preamble is non-binding merits deeper consideration. According to the Vienna Convention on the Law of Treaties, ‘the context for the purpose of the interpretation of a treaty shall comprise, in addition to the text . . . its preamble and annexes . . .’19 Thus the preamble, while not dispositive, is nonetheless an interpretive tool whose import is obscured by the truism that it is ‘non-binding’. This is certainly borne out by the early practice of the CRPD Committee and its jurisprudence. To cite but one example, the attention given to preambular paragraph (e) bears out the heft that language housed in a preamble may have, including its bearing on the interpretation of the treaty. Paragraph (e) was intended to reflect the social model of disability and is explicitly linked to article 1 in practice and numerous commentaries.20
Art 31 VCLT. Situation in Democratic Republic of the Congo, Judgment on the Prosecutor’s Application for Extraordinary Review of Pre-Trial Chamber I’s 31 March 2006 Decision Denying Leave to Appeal, ICC-01/04-168 (13 July 2006) para 33. See also Tuiloma Neorini Slade and Roger S Clark, ‘Preamble and Final Causes’, in Roy S Lee (ed), The International Criminal Court: The Making Of the Rome Statute: Issues, Negotiations, Results (Brill 1999) 425–29; Morten Bergsmo and Otto Triffterer, ‘Preamble’, in Otto Triffterer (ed), Commentary on the Rome Statute of the International Criminal Court (2nd edn, C H Beck/Hart/Nomos 2008) 1–47; William Schabas, The International Criminal Court: Commentary on the Rome Statute (OUP 2010) 29–53; Eric David, in Paul de Hert et al (eds), Code of International Criminal Law and Procedure: Annotated (Larcier Ghent 2013) 7–10. 18 Landmine Survivors Network, ‘Comments on the draft text, Preamble’, third session, available at: . 19 Art 31(2) VCLT. 20 See eg Michael Ashley Stein and Janet E Lord, ‘The United Nations Convention on the Rights of Persons with Disabilities: Process, Substance, and Prospects’ in Felipe G Isa and Koen de Feyter (eds), International Human Rights Law in a Global Context (University of Deusto 2008) 495. See also Gerard Quinn, ‘Disability and Human Rights: A New Field in the United Nations,’ in Catarina Krause and Martin Scheinin (eds), International Protection of Human Rights: A Textbook (Abo Akademi 2009) 247–71. 16 17
lord
8
Preamble
2.2 The States Parties to the Present Convention The CRPD preamble opens in the name of: ‘The States Parties to the present Convention’, a conventional and thus unremarkable introduction, but for the fact that the CRPD allows, in article 44, for regional integration organizations to join as parties.21 While not defined in the CRPD, the term ‘regional integration organization’ may be understood to mean ‘an organization constituted by sovereign states of a given region, to which its member states have transferred competence in respect of matters governed by this Convention and which has been duly authorized, in accordance with its internal procedures, to sign, ratify, accept, approve or accede to it . . .’.22 The European Union (EU), a regional integration organization, is party to the CRPD by virtue of article 44. The EU is constituted by member states but also enjoys separate legal personality.23 This gives some credence to the view that the term ‘parties’ would have been preferable, but the point is likely a pedantic one.24
3.1 Paragraph (a) Preambular paragraph (a) reaffirms human rights principles set out in the UN Charter and reflects the conceptual interrelationship between human rights and other core values of the United Nations. It underscores a principle that is restated in article 3(a) CRPD that is of particular significance for disability rights advocates who have long argued that seeing persons with disabilities as equal in dignity is a necessary precondition to recognition of disability rights. This principle is closely linked to the obligations laid out in article 8 CRPD, concerning awareness-raising, which recognizes the need to combat negative stereotypes based on disability—often on erroneous attributes of causation, linked to deviance, curse, and the like—in order to advance disability rights in law, policy, and programming.25 The text appeared first in the Mexican paper prepared to form the basis of discussions at the onset of the Ad Hoc Committee process, and was housed in two separate paragraphs at the start of the preamble.26 It was not incorporated into the Bangkok Draft,
21 Provisions on participation identify the categories of states or organizations that may become party. Certain treaties can only be implemented by states by reason of their nature and full competence in respect of the subject matter of those treaties. Art 125, 1998 Rome Statute of the International Criminal Court, 1998, which reads:
Signature, ratification, acceptance, approval or accession 1. This Statute shall be open for signature by all States. See 2000 UN Convention against Transnational Organized Crime, Preamble (j). See elsewhere commentary in this volume. 24 Drawing from the meaning ascribed to the term ‘states’ in other treaties referencing regional integration organizations, ‘States Parties’ in the Preamble and in other provisions in the CRPD should be understood as applying to regional integration organizations, but within the limits of their competence. See 2000 UN Convention against Transnational Organized Crime, Preamble (j). 25 For more on art 8, see elsewhere commentary in this volume. 26 The text of the two paragraphs in the Mexico Proposal reads: 22 23
Reaffirming the purposes and principles of the Charter of the United Nations; Considering that the Charter of the United Nations reaffirms the value of the human person based on the principles of dignity and equality inherent to human beings and resolves to promote the social progress and better standards of living of all peoples within a broader concept of freedom; See Mexico Proposal (n 5) at Preamble.
lord
Preamble
9
but made its way into the Chair’s text that was used as the basis for the Working Group discussions, by which time it assumed the following form in a single paragraph: Emphasizing that, in accordance with the principles proclaimed in the Charter of the United Nations, recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world . . . 27
The Working Group adopted a similar formulation, replacing ‘Emphasizing’ with ‘Recalling’.28 The contribution of recital (a) for the CRPD is its reflection of the foundational principles of the UN Charter that have since given rise to a detailed human rights system and framework. It also reflects the notion, as underscored throughout the Ad Hoc Committee negotiations,29 that the CRPD comprises not new rights, but an expression and elaboration of human rights principles already embedded in existing human rights law and in the architecture of the international human rights framework (treaty, custom, general principles). As such, this paragraph instantiates the notion that the CRPD is firmly rooted in the existing human rights architecture and represents not a new take, but rather an articulation of previously enumerated rights.30
3.2 Paragraph (b) The second paragraph in the preamble affirms the foundation for the human rights of persons with disabilities in its recognition that the International Bill of Human Rights (comprising the UDHR, ICCPR, and ICESCR) accords rights and freedoms to all. It gives expression to the understanding that human rights apply to all persons and that, as such, all rights are to be applied without distinction. The various rights and freedoms included in these three instruments, while not explicit as to disability discrimination, are nonetheless open ended and understood to apply to persons with disabilities.31 The language for this paragraph was first introduced in the Bangkok draft, although it included an open-ended list of prohibited grounds of discrimination, including disability, among the prohibited grounds.32 The paragraph was included in the Working Group draft, preambular paragraph (b), minus the listing of characteristics, and remained essentially unchanged, apart from grammatical correction.33 27 See ‘Chair’s Draft Elements of a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities, Draft Elements for Inclusion in a Preamble’ (7 January 2004). 28 See ‘Report of the Working Group to the Ad Hoc Committee, Ad Hoc Committee on a Comprehensive and Integral Int’l Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ 5–16 January 2004, annex I, Art 11 UN Doc A/AC265/2004/WG1 (27 January 2004) [Working Group Draft], (‘Recalling the principles proclaimed in the Charter of the United Nations which recognise the inherent dignity and the equal and inalienable rights of all members of the human family as the foundation of freedom, justice and peace in the world’). ibid, at Preamble. 29 Don McKay, ‘The Convention on the Rights of Persons with Disabilities: A Benchmark for Action’ (2007) 56 Int’l Rehab Rev 2. 30 For an account of the UN human rights architecture, see Ilias Bantekas and Lutz Oette, International Human Rights Law and Practice (2nd edn, CUP 2016) chs 1–4. See also Julie A Mertus, The UN Human Rights System: A Guide for a New Era (2nd edn, Routledge 2010). 31 See Committee on Economic, Social and Cultural Rights (CESCR), ‘General Comment No 5, persons with disabilities’ UN Doc E/1995/22 (9 December 1994) para 5; (‘[T]he requirement contained in article 2 (2) of the Covenant that the rights “enunciated . . . will be exercised without discrimination of any kind” based on certain specified grounds “or other status” clearly applies to discrimination on the grounds of disability.’); ibid. 32 33 Bangkok Draft, Preamble (a). Working Group, Preamble (b).
lord
10
Preamble
The inclusion of the term ‘all’ in relation to rights and freedoms is significant in the context of disability, as prior instruments were in some instances held to render rights and freedoms contingent for persons with disabilities. This point was driven home both on the floor of the Ad Hoc Committee with frequency and in commentaries on the CRPD treaty content.34 The inclusion of the term, therefore, goes to the heart of the rationale for a specific treaty on a sub-population group covered in theory but not in practice by existing human rights law. Finally, the language ‘without distinction of any kind’ is reflected in instruments that predate the international human rights conventions.35
3.3 Paragraph (c) Preambular paragraph (c) is drawn directly from paragraph 5 of the Vienna Declaration and is one of the most significant phrases to come out of the World Conference on Human Rights held in Vienna in 1993 and resulting in a detailed Programme of Action laying out priority issues for action to advance human rights.36 NGO commentaries underscored the importance of including this language, noting the relevance of the Vienna Declaration. The Landmine Survivors Network (LSN) Commentary on the Working Group Draft, noted the following regarding the Working Group text: ‘Draft Preamble paragraph (c) contains language that has not been introduced in previous submissions of the draft text’ and further, ‘[t]he reference in this paragraph is to the Vienna Declaration (1993), paragraph 5: “All human rights are universal, indivisible and interdependent and interrelated”.’37 The Working Group text remained intact, the only amendment to the paragraph being the addition of the term ‘interrelatedness’. Two substantive points bear mention in relation to this paragraph. First, early on in the negotiation of the CRPD there was resistance to the comprehensive approach to human rights adopted in the Convention on the Rights of the Child. Some delegations urged the adoption of a treaty more narrow in scope, focused on non-discrimination and thus more aligned with CEDAW or CERD.38 The Special Rapporteur on Disability, charged with assisting in the implementation of the UN Standard Rules, himself cautioned against a
34 See eg Working Group Discussion of Objectives and General Principles where Governments and NGOs emphasized that all human rights are applicable to persons with disabilities and should be recognized as such. Working Group Daily Summary Vol 3 No 1 (5 January 2004). 35 For a review of international humanitarian law in the context of disability, see Janet E Lord, ‘International Humanitarian Law and Disability: Paternalism, Protection or Rights?’ in Michael Gill and Cathy Schlund- Vials (eds), Disability, Human Rights and the Limits of Humanitarianism (Ashgate 2014) 155. The phrase mirrors that found in the principal international humanitarian law instruments. The point is not merely academic, rather, the CRPD imports the principle of adverse distinction into its framework through art 11, specifically in its acknowledgment of the application of international humanitarian law to persons with disabilities in situations of risk. 36 Vienna Declaration and Programme of Action UN Doc A/CONF157/23 (25 June 1993) para 5. 37 Landmine Survivors Network, ‘Convention Document Legal Analysis: A legal commentary on the draft convention text produced by the Working Group for the UN Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (March 2004) [LSN Working Group Commentary], available at: . 38 See eg Second Session of the UN Ad Hoc Committee on a Comprehensive and Integral Convention on the Rights and Dignity of Persons with Disabilities, Statement by H E Mr Peter Tesch, Australian Mission to the UN, 17 June 2003 (arguing for a convention narrow in scope and focused on filling existing gaps in a form that would be annexed to an existing treaty).
lord
Preamble
11
far-reaching convention and instead favoured a narrowly crafted instrument.39 Recital (c) therefore is ultimately a reflection of the decision taken in the Ad Hoc Committee to proceed with the drafting of a comprehensive treaty text elaborating on the full range of human rights—civil, political, economic, social, and cultural—within the context of disability.40 Second, the point has been made that disability rights are particularly reflective of this notion of indivisibility.41 Indeed, this may be empirically proven: inaccessible means of transport can mean the difference between an education and life-long poverty for an individual with a disability. Illustratively, inaccessible rehabilitation, as for a landmine survivor, can make the difference between successful reintegration into society following traumatic injury and life-long unemployment. And, as noted by Anna Lawson, the duty to provide reasonable accommodation is the glue that holds together these various rights.42
3.4 Paragraph (d) The human rights treaties cited in preambular paragraph (d) are all legally binding, multilateral human rights conventions. They are also all considered ‘core’, the nomenclature used by the Office of the High Commissioner for Human Rights to denote the existence of a treaty monitoring body attached to a human rights convention.43 As such, they enjoy something of a higher order in international human rights law. Other human rights conventions are not included and the Universal Declaration of Human Rights (UDHR), the instrument from which all of these treaties emanate, receives mention in preambular paragraph (b). The sequencing is also deliberate and indicates the order in which they were adopted, but for the ordering of CERD, adopted one year prior to the two Covenants, which appears after the two foundational human rights conventions. While the development of the text for preamble (d) did not merit extensive discussion during the CRPD negotiations of any particular note, the Migrant Workers Convention44 was included in the list, notwithstanding objections to its mention voiced early on, at the Working Group. The objection was strong enough to merit a footnote in the Working Group text and its inclusion was ultimately accepted on the basis that the Convention had entered into force and thus did indeed form part of the corpus of human rights law.45
39 See Bengt Lindqvist, UN Special Rapporteur on Disability, ‘Some Thoughts on the Elaboration of a Disability Convention’ [undated] (noting that a comprehensive and integral convention ‘would become very long and perhaps complicated to handle from a monitoring point of view.’); ibid para 14. 40 This is best exemplified by the submission of the Chair’s text prior to the Working Group, which covers a full range of civil, political, economic, social, and cultural rights and the resulting Working Group text, which likewise reflects a comprehensive approach. See Chair’s Text, as well as the Working Group text. 41 Rebecca Brown and Janet E Lord, ‘The Role of Reasonable Accommodation In Securing Substantive Equality For Persons With Disabilities: The UN Convention On The Rights Of Persons With Disabilities’, in Marcia H Rioux, Lee Ann Basser, and Melinda Jones (eds), Critical Perspectives on Human Rights and Disability Law (Martinus Nijhoff 2011) 273. 42 Anna Lawson, Disability and Equality Law in Britain: The Role of Reasonable Adjustment (Hart 2008) 19. 43 The Office of the High Commissioner for Human Rights denominates as ‘core’ human rights conventions those that have treaty bodies to monitor their implementation. See OHCHR, Background conference document prepared by the OHCHR for the fifth session of the Ad Hoc Committee, ‘Monitoring Implementation of the International Human Rights Instruments: An Overview of the Current Treaty Body System’ UN Doc A/AC265/2005/CRP2 (2005). 44 International Convention on the Rights of All Migrant Workers and Members of Their Families, UNGA Res 45/158, annex (1990). 45 See eg Working Group Draft fn 2.
lord
12
Preamble
The proposal by Chile, according to which mention be made to the World Conference against racism, racial discrimination, xenophobia, and related intolerance, held in South Africa in 2001, with a view to acknowledging the impetus given to the Ad Hoc Committee process was not taken up. This is an unfortunate omission in the preamble given its historical archiving function and perhaps counter-intuitive linkage between the two processes.46 The final text of the paragraph serves two principal functions. First, it traces antecedent instruments along the lines of other preambular paragraphs in human rights treaties and second, it places prior core conventions within the CRPD context. This, then, arguably helps to situate the CRPD as a mere expression of—rather than departure from—existing human rights law.
3.5 Paragraph (e) Preambular paragraph (e) begins with an acknowledgement that disability ‘is an evolving concept’. This reflects in part the difficulty of coming to consensus on whether and how to define disability in the CRPD, a matter resolved by the inclusion of language in article 1, concerning its purpose, as opposed to article 2, relating to definitions. It signals, therefore, both the difficulty of agreeing on a common definition of disability, together with the imperative that, howsoever defined, disability falls squarely within a socio-contextual frame. In this respect it is perhaps the most important conceptual statement in the preamble, instantiating the decisive shift from a medical and/or charity modelled approach to one that understands the disabling impact of socio-contextual factors exogenous to individuals with a disability.47 As Kayess and French note, the paragraph ‘makes it clear that disability is to be understood according to the precepts of the social model’ and as ‘affirmed by the description of persons with disability in the second paragraph of article 1, and in the virtually absolute emphasis placed by the substantive human rights articles on the removal of barriers and provision of accommodations that will facilitate participation and inclusion of persons with disability within society’.48 Notwithstanding its central importance in helping conceptualize the thrust of the CRPD, early preamble proposals did not specifically address the framing of disability in accordance with the social model, apart from the draft proposal of Venezuela, which was
46 ‘Report of the third session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2004/5 (9 June 2004), Annex, Compilation of proposed revisions and amendments made by the members of the Ad Hoc Committee to the draft text presented by the Working Group as a basis for negotiations by Member States and Observers in the Ad Hoc Committee, 9 June 2004 (‘It is recommended that appreciation be extended to the World Conference against racism, racial discrimination, xenophobia and related intolerance, held in South Africa in 2001, which gave impetus to the resolution promoting the work of the United Nations in the elaboration of an International convention on the rights of persons with disabilities—Chile.’). 47 There were, however, some international documents that reflected, at least to some extent, the social model understanding of disability. Following the adoption of the Standard Rules, the Vienna Declaration and Programme of Action, adopted in 1993, stated the need for the ‘elimination of all socially determined barriers, be they physical financial, social or psychological, which exclude or restrict full participation in society’; Vienna Declaration and Programme of Action UN Doc A/CONF 157/23 (25 June 1993) para 63. 48 Rosemary Kayess and Phillip French, ‘Out of Darkness Into Light? Introducing the Convention on the Rights of Persons with Disabilities’, (2008) 8 Hum Rts L Rev 1; see also Michael Ashley Stein, ‘Disability Human Rights’ (2007) 95 California Law Review 75.
lord
Preamble
13
a response to the Mexican proposal, containing various amendments, one of which was the following addition to the preamble: Recalling that discrimination against anyone on the basis of any structural or functional absence or impairment or any temporary or permanent limitation, restriction, obstruction or dysfunction in respect of human beings’ relationship to their environment constitutes a violation of the principles of equal rights and respect for human dignity and impedes the participation of persons with disabilities under conditions of equality in social, economic, political and cultural life . . . 49
While awkwardly stated, and reflecting in any event a translation from the original Spanish into English, the draft text is a reflection, at least in part, of a social model understanding of disability. The LSN Comparative Analysis Commentary of December 2003, in its review of proposals by Mexico, the Bangkok Meeting, and New Zealand, remarks: ‘It is notable that none of the documents specifically calls for the preamble to acknowledge the paradigm shift in thinking about disability that has occurred over the last few decades to reflect a move away from medical models of disability towards a recognition of rights-based social models.’50 The LSN Commentary observes, however, that a contribution by New Zealand refers specifically to the shift away from the charity and medical models regarding stereotyping of groups, but is not a textual proposal, but rather a statement of principles.51 A major push for the inclusion of this paragraph in the preamble came from a coalition of Australian DPOs. In a 2004 paper on the preamble, they argued that ‘the Preamble, for interpretative purposes, should clearly signal a change in understanding of disability away from one of ‘individual pathology’ to a recognition of the way in which social structures and processes disable people with impairments, and thereby deny their human rights’ and to that end proposed the following addition: Recognising a profound shift away from an understanding of disability as an individual pathology towards one that recognises the disabling impact of inaccessible social structures and processes on persons with impairment.52
The Australian delegation, working in collaboration with Australian DPOs, pressed for the inclusion of language reflecting the social model of disability. The resulting reference to disability as ‘an evolving concept’ in the preamble is in part a reflection of the progressive evolution of disability reflected in UN instruments and also signals the evolution of disability and its definition in national law. Discussions within the Ad Hoc Committee emphasized the importance of capturing in the treaty text this shift and also emphasizing that the concept is in fact still evolving.53 Thus the reference to the evolution of the concept is an acknowledgment of the tension that persisted between delegations favouring some degree of guidance, given there was no universally adopted definition of disability and those who feared that having a definition would operate as a constraint to 50 51 See Venezuelan Draft. LSN Comparative Analysis. ibid. People with Disability Australia et al, Submission to the Ad Hoc Committee, Preamble (July 2004). 53 Reflecting the social model of disability and also allowing for some flexibility given the variation among persons with disabilities in the way they choose to self-identify was expressed early on in the Ad Hoc Committee process. WNUSP in its written submission ‘Basic Articles: Who is Covered’, underscored that ‘[i]t would also be desirable to obtain a definition that is comfortable both for people with disabilities who identify with medical terminology and diagnosis, and for those who reject medical terminology and identify with disability as a social and political category only.’ Ad Hoc Committee, ‘NGO Contributions to the Elements of a Convention’ UN Doc A/AC265/CRP13/Add 1 (23 June 2003) 10. 49 52
lord
14
Preamble
the realization of the Convention’s aims. The language did not make its way into the text of the treaty until the eighth session where China proposed the following language that very much mirrors the final text: Recognizing an evolving concept of disability where disability is a state of participation restriction resulted from interaction between an individual with impairments and environmental barriers.54
As a matter of international law, this recognition in the text introduces a certain measure of flexibility in much the same way that similar acknowledgement has been made in the international environmental law context. The clear thrust of the language is that disability must be understood not as a medical issue but instead as one in which a multitude of barriers in society serve to impact the enjoyment of human rights by persons with disabilities. It introduces a kind of flexibility into an otherwise set text—it does not lock into the treaty a fixed and static understanding of disability, rather, it embraces a more nuanced approach to the conceptual boundaries of disability.
3.6 Paragraph (f) Preambular paragraph (f ) is notable more for what it excludes in its spare mention of only two disability specific instruments adopted before the CRPD. The origin of the language is the Mexican Paper which devotes a separate, highly effusive, preambular paragraph to the Standard Rules.55 The Bangkok draft adopts the Mexican language in its preamble, whereas the Venezuelan proposal, by contrast, offers an amendment to the draft provision that includes a voluminous listing of seventeen instruments.56 Each of these proposals addressed the World Programme of Action separately in other preambular paraphrases. Mention to the World Programme of Action in the same paragraph as the Standard Rules arose first in response to the Working Group, where the draft Preamble excluded any mention of the document. The LSN Commentary to the Working Group text noted: ‘Given that the Standard Rules summarize the message of the UN World Programme of Action, the Ad Hoc Committee may find it appropriate to include reference to the UN World Programme of Action as well.’57 The initial characterization of the role that the Standard Rules played in the equalization of opportunities for persons with disabilities drew criticism from the outset, as evidenced in the LSN analysis provided at the request of the Mexican government, which bluntly (but correctly) noted: ‘This paragraph arguably overstates the role and impact that the Standard Rules has played.’58 The resulting language in recital (f ) is toned down from earlier expressions, and makes reference to the importance of ‘principles and policy 54 Proposed modifications by governments during the Eight Session of the Ad Hoc Committee, Preamble, China, available at: . 55 Mexico Working Paper (n 5)—the proposed language read: ‘Noting with great satisfaction that the Standard Rules on the Equalization of Opportunities for Persons with Disabilities have played an important role in influencing the promotion, formulation, and evaluation of the policies, plans, programs, and actions at the national, regional, and international levels to further the equalization of opportunities by, for and with persons with disabilities.’ For the Venezuelan proposal, see Venezuela Draft, Preamble. 56 57 Bangkok Draft, Preamble. LSN Working Group Commentary. 58 The LSN analysis advised that Mexico: ‘Amend to improve drafting: Noting . . . that the Standard Rules on the Equalization of Opportunities for Persons with Disabilities have played an important role in . . .’ Landmine Survivors Network, ‘Analysis to the Mexican Working Paper for a Proposal on a Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities’ (2002) (on file with author).
lord
Preamble
15
guidelines’ contained in both the World Programme of Action (which preceded the Standards Rules) and the subsequently adopted Standard Rules.59 The recognition of the ‘principles and policy guidelines’ in the paragraph draws an important distinction between those disability-specific instruments referenced here and those instruments mentioned elsewhere in the Preamble that are legally binding. These two soft-law instruments create an ongoing mandate, in particular for UN DESA, that did not expire with the adoption of a legally binding treaty.60 The point is not merely academic; activists in the disability community have sometimes put forward the view that these two instruments ought to fall into desuetude on the basis that the CRPD supersedes them; essentially they wished they would just go away. While incorrect from a legal standpoint, it is a political point with clear implications for the budgeting of UN DESA, the entity charged with the follow up of both instruments that also share the CRPD Secretariat with OHCHR. Of greatest interest is the decision taken by the drafters not to name a large list of antecedent instruments notwithstanding their focus on disability issues and in spite of the fact that so many figured into the draft preambular language of earlier proposals put forward by states.61 Some of the key omissions reflect deep ideological rifts, as has been duly noted by CRPD commentators.62 In this category falls the decision to exclude mention of the instrument adopted during the same year as the Standard Rules, which were heavily relied upon by the CRPD drafters. The MI Principles were excluded on the basis that they were outdated, reflected a medicalization of disability, and undercut the human rights of persons with mental disabilities along with the two first disability-specific international instruments adopted by the UN General Assembly during the 1970s.63 For the World Network of Users and Survivors of Psychiatry, for instance, they reflected concern ‘about the naming of instruments containing outdated or paternalistic norms, which might 59 Notably, the resulting text reflects the statement found in the Position paper of China, combining mention of the two primary instruments, their importance, and role of their principles:
The international instruments adopted by the United Nations, such as the World Programme of Action concerning Disabled Persons and the Standard Rules on the Equalization of Opportunities for Persons with Disabilities, have been of major importance in promoting the rights of persons with disabilities and improving their situation. They will continue to form an integral part of the indispensable guiding principles pertaining to the cause of persons with disabilities. Ad Hoc Committee on a Comprehensive and Integral Int’l Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, Convention on the Rights of Persons with Disabilities: ‘A Proposed Draft Text by China’ (11 December 2003) [China Proposal]. 60 See eg Venezuelan proposal. 61 For a voluminous list of antecedent international and regional treaties and soft law instruments that figured into the Venezuelan proposal, see preambular paragraph number 6. 62 See generally Kayess and French (n 48). Paragraph (f ) of the Preamble brings into focus this issue of continuity and discontinuity of the CRPD with the United Nation previous expositions of the human rights of persons with disability and related programmatic activity. Despite its benign appearance, it is intensely politically charged. The World Programme of Action concerning Disabled Persons and the Standard Rules on the Equalisation of Opportunities of Persons with Disabilities are explicitly acknowledged as antecedents to the CPRD but the 1971 Declaration, the 1975 Declaration, and the [MI] Principles are not. These omissions were intensely pursued by the IDC, which sought to negate any relationship between these instruments and the CRPD, and thereby to limit any future reliance upon them for the purposes of interpreting and applying CRPD rights; ibid 24. 63 The general argument in favour of excluding mention of these two instruments was the recognition that while they may have been, for their time, a step forward in placing disability rights on the international agenda, they reflect less a rights-based model or socio-contextual understanding of disability and more a charity/ medical orientation. See Stein and Lord (n 20) 495.
lord
16
Preamble
cause confusion in the interpretation of this convention’.64 Their exclusion from the preamble should see them fall into desuetude. The objections also rested on the particular discourse around disability in those instruments and the perspective that, following Mary Joe Frug’s work in post-modern feminism, the construction of disability in legal text is an important and fertile ground for reform and very much a site of political struggle over disability oppression.65
3.7 Paragraph (g) In paragraph (g), the CRPD evokes disability inclusion as an essential strategy of sustainable development. Further, it expresses a linkage to environmental concerns, broadly defined in the context of disability as the array of barriers presented in the environment that inhibit participation and full inclusion. In so doing, it acknowledges that the long-term stability of the economy and environment is only achievable through the integration and acknowledgement of economic, environmental, and social concerns throughout the decision-making process66 and that mainstreaming disability is integral to development.67 The phrase was a late addition to the preamble and did not appear in the text of the penultimate seventh session of the Ad Hoc Committee. The phrase referencing mainstreaming disability in development, and an additional preambular paragraph tying together development and human rights realization, was introduced by Bangladesh at the final (eighth) session and the paragraph on sustainable development was accepted with minor edits, while the additional paragraph on development and human rights was dropped.68 The proposal by Cuba earlier on in the negotiations to expressly acknowledge the right to development in the preamble was not taken up and provoked a routine (ideologically loaded) objection from the United States, among other delegations.69 64 Ad Hoc Committee on a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities, New York, 16–27 June 2003, ‘NGO Contributions to the Elements of a Convention’, World Network of Users and Survivors of Psychiatry, available at: . 65 Frug’s work is instructive in making the point that: ‘The [postmodern] position locating the human experience as inescapably within language suggest that feminists should not overlook the constructive function of legal language as a critical frontier for feminist reforms.’ Mary Joe Frug, ‘A Postmodern Feminist Legal Manifesto (an Unfinished Draft)’ (1992) 105 Harvard Law Review 1045, 1046. 66 United Nations Conference on the Human Environment, 1992 Rio Declaration on Environment and Development. United Nations General Assembly, Report of the World Commission on Environment and Development: Our Common Future’ (1987). 67 John C Dernbach, ‘Sustainable Development as a Framework for National Governance’ (1998) Case Western Reserve Law Review 1–103; John C Dernbach, ‘Achieving Sustainable Development: The Centrality and Multiple Facets of Integrated Decision-Making’ (2003) Indiana Journal of Global Legal Studies 247. 68 Ad Hoc Committee, Eighth session, ‘Proposed Changes by Governments’, Preamble, Bangladesh (on file with author); see also Ad Hoc Committee, eighth session, ‘Compilation of Proposals Received from Government Delegations Electronically by Friday, 18 August 2006, midnight’ (18 August 2006) (on file with author). At the same time during the eighth session, the International Disability Caucus was still pressing hard for the inclusion of a separate article on international cooperation (Art 32) that would ensure the inclusion of persons with disabilities at all levels of development and ensure that public money would not fund programmes that create barriers and, further, supported the inclusion in the same article of a reference to humanitarian and emergency aid as a critical component of international cooperation. See International Disability Caucus, ‘News Page for August 14’ (14 August 2006) (on file with author). 69 The Cuban proposal read: ‘Recognizing that the exercise of the right to development, as a universal and inalienable right, is a prerequisite to the integral and sustainable solution to meeting the needs of persons with disabilities.’ Ad Hoc Committee, ‘Compilation of Proposed Revisions and Amendments made by the members
lord
Preamble
17
The application of sustainable development in practice requires the collection and dissemination of relevant information—in this case information about barriers—and further, requires the conduct of environmental impact assessments.70 It thus serves as a basis for allowing, or indeed requiring, disability inclusion and accessibility in bilateral and multilateral assistance, in much the same way that sustainable development as a principle paves the way for green conditionality. The notion of disability inclusion in achieving sustainable development and the practical consequences flowing from this approach have already started to emerge.71 Without question, its linkage in recital (i) is contributing to the emerging international law on sustainable development. As such, the language in the preamble substantively elevates the interrelationship between disability inclusion and sustainable development. It echoes the recognition in the 2030 Agenda for Sustainable Development that persons with disabilities are protected from discrimination in the context of development.72 The project of ensuring that disability inclusion is part and parcel of sustainable development is firmly reflected in the Sustainable Development Goals (SDGs) and the new World Bank’s Environmental and Social Framework. It is likewise reflected in related instruments, such as the Sendai Framework and the New York Declaration, insofar as humanitarian action is closely related to development and a component of it in many instances.73
3.8 Paragraph (h) The ICCPR and ICESCR provide that rights set out in therein derive from the inherent dignity of the human person.74 Human dignity is an intrinsic and universal attribute of all human beings and thus discrimination on the basis of disability violates that inherent
of the Ad Hoc Committee to the Draft Text presented by the Working Group as a basis for Negotiations by Member States and Observers in the Ad Hoc Committee’, Annex II, Preamble (d). 70 The status of sustainable development in international law is variously described as a rule of customary law, an arti culated purpose of environmental treaty law or a concept with, at the very least, interstitial normative force. Whatever its nature in international law, the linkage provided between sustainable development and disability inclusion in the CRPD Preamble informs the concept. For more on the legal status of the concept of sustainable development in international law, see Marie Claire Cordonier Segger, ‘Sustainable Development in International Law’ in David Armstrong (ed), Routledge Handbook of International Law (Routledge 2009) 359. 71 See UNGA Res 63/150 (18 December 2008), ‘Realizing the Millennium Development Goals for Persons with Disabilities’ (urging ‘states to pay special attention to the gender specific needs of persons with disabilities, including by taking measures to ensure their full and effective enjoyment of all human rights and fundamental freedoms’), operative paragraph 8. See ibid, operative para 6, calling on states ‘to enable persons with disabilities to participate as agents and beneficiaries of development, in particular in all efforts aimed at achieving the Millennium Development Goals’, by ensuring that programmes and policies to promoting gender equality and empowerment of women and improving maternal health, among others, are inclusive of and accessible to persons with disabilities. 72 UNGA Res 70/1 (21 October 2015), ‘Transforming Our World: The 2030 Agenda for Sustainable Development’ para 19 (‘We emphasize the responsibilities of all States, in conformity with the Charter of the United Nations, to respect, protect and promote human rights and fundamental freedoms for all, without distinction of any kind as to race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth, disability or other status.’). 73 World Bank, ‘Environmental and Social Framework’ (2017), available at: ; ‘Sendai Framework for Disaster Risk Reduction’, (UNISDR 2005), available at: ; New York Declaration for Refugees and Migrants, UNGA Res 71/1 (19 September 2016). 74 1966 International Covenant on Civil and Political Rights, [ICCPR]; 1966 International Covenant on Economic, Social and Cultural Rights (ICESCR).
lord
18
Preamble
dignity. The marrying of non-discrimination and dignity in this paragraph is an implicit recognition that the experience of disability discrimination offends human dignity and worth. The reference to ‘respect for inherent dignity’ in the preamble echoes the preambular paragraph in the Universal Declaration of Human Rights, which emphasizes that ‘recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice, and peace in the world’.75 Last, the addition of the term ‘worth’ was introduced by the Holy See and mirrors language in the preamble of the UN Charter.76
3.9 Paragraph (i) Preambular paragraph (i) follows closely on the preceding recital and is a reminder that persons with disabilities are not homogenous, but rather represent a diverse population. This recognition in the preamble is further reflected in the substantive provisions of the CRPD, for instance in article 3 where respect for difference is, in part, a statement about the diversity of disability; and equally in that identifying and dismantling barriers does not allow for a uniformity of approach, and that the very concept of reasonable accommodation mandates an acute attention to the individual needs of disabled persons. The importance of recognizing the diversity of persons with disabilities was emphasized in the European Union’s contribution to proposals or elements of a convention compiled by the Ad Hoc Committee early in the process, in December 2003 and reflected also in the specific text submitted by the EU.77 The EU language introduced at that time reflects the final version, but for the addition of the term ‘further’, which serves the purpose of uniting prior paragraphs and an additive function in that it builds on the multifaceted nature of disability. While the paragraph is the briefest of the preambular paragraphs, it in fact captures better than any other provision in the treaty the complexity of disability and, therefore, the magnitude of the Convention’s aims. It also reflects a compromise between those wanting some mention of diversity, though with greater specificity, and those who preferred a spare text that did not seek to define or otherwise enumerate diversity in the context of disability. The clarification offered by South Africa, that ‘persons with disabilities are not a homogeneous group, but diverse in their own right’ was not taken up.78 75 Universal Declaration of Human Rights (UDHR), UNGA Res 217 (10 December 1948), at preamble; see also Pretty v United Kingdom App No 2346/02, ECHR 29 April 2002 para 65) (recognizing human dignity and human freedom as ‘the very essence of the Convention’). The EU Charter of Fundamental Rights recognizes that the Union is founded on the ‘universal values of human dignity, freedom, equality and solidarity’, European Union, Charter of Fundamental Rights of the European Union 26 October 2012, 2012/C 326/02. 76 UN Charter, preamble, (‘to reaffirm faith in fundamental human rights, in the dignity and worth of the human person, in the equal rights of men and women and of nations large and small’). 77 Ad Hoc Committee, ‘Compilation of Proposals for Elements of a Convention’ (19 December 2003) 5 and 9; Note: This particular compilation in advance of the Working Group, released in December 2003, comprises an updated compilation of both Government and NGO contributions that was previously released at the second session of the Ad Hoc Committee. The contribution of New Zealand early on in the process also cautioned on the importance of recognizing ‘the diversity of disabled people and their contexts in relation to gender, race, colour, age and ethnicity’; ibid 19. Of NGOs supporting reference to diversity early on in the process, see the contribution by the European Disability Forum, which considered that ‘the diversity of the disability population must be acknowledged’; ibid 33. 78 Ad Hoc Committee, ‘Compilation of Proposed Revisions and Amendments made by the Members of the Ad Hoc Committee to the Draft Text presented by the Working Group as a basis for negotiations by Member States and Observers in the Ad Hoc Committee’, Annex II, preamble (g).
lord
Preamble
19
Its first appearance in an international human rights convention is an important contribution to the evolving notion of intersectionality.
3.10 Paragraph (j) Preambular paragraph (j) builds on the prior paragraph, adding another dimension to the diversity of the population of persons with disabilities as ascribed by the treaty drafters. The resulting language is the consequence of a tricky threading of the needle during the CRPD negotiations. There was a strongly held view that the Convention needed to acknowledge not only the diversity of disability but also the idea that impairment exists along a spectrum and that some individuals experience the disabling impact of impairment differently, and indeed more acutely, than others. An alternative text proffered during the course of the negotiations—references, for instance, to ‘multiple, profound, or severe’ disability—was rejected.79 The Bangkok text sought to introduce language that addressed several elements of intersectional discrimination together: Recognizing that persons with severe and multiple disabilities, persons with intellectual disability, members of minority population groups with disabilities or indigenous persons with disabilities are subjected to multiple forms of discrimination, continued deprivation and neglect, and denial of their rights, and that there are compelling reasons for addressing their particular needs and those of their families.80 Civil society organizations argued that care must be taken not to reinforce stigma—and thereby fall afoul of the kind of legislative stereotyping the treaty was seeking to combat—in language adopted to describe individuals with disabilities. Ultimately, the various ideas reflected in the Bangkok draft were parsed into separate paragraphs in the preamble (paras. (j), (p)).
The resulting wording achieves the purpose of the drafters to carefully align the treaty language with a socio-contextual understanding of disability. The term ‘support needs’ places the focus externally, on the support to be provided to facilitate human rights enjoyment, much like the upending achieved in article 12, according to which the presumption in favour of incapacity yielded to a supported decision making framework emphasizing support needs, not procedures to remove decision-making power or presumptions of incapacity.81
3.11 Paragraph (k) Preambular paragraph (k) provides recognition that community isolation and exclusion of persons with disabilities from decision-making is a global phenomenon, affecting developed and developing countries alike. It signals an acknowledgement that the non- binding, but disability-specific instruments had not resulted in the elevation of disability rights on the international agenda, nor had resulted in improvements in law, policy, and
79 Ad Hoc Committee, ‘Report of the third session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’, UN Doc A/AC265/2004/5 (2004) Annex, ‘Compilation of Proposed Revisions and Amendments made by the Members of the Ad Hoc Committee to the Draft Text presented by the Working Group as a basis for Negotiations by Member States and Observers in the Ad Hoc Committee’ (9 June 2004). 80 Bangkok Draft (n 5) preamble (u). 81 For commentary on Art 12, see commentary in this volume.
lord
20
Preamble
programming. It is also a recognition that the existing instruments—both treaties as well as disability-specific, non-binding instruments, had not resulted in a major turnaround. This was amply demonstrated in the oft-cited work released some months prior to the first meeting of the Ad Hoc Committee, namely the Quinn/Degener OHCHR report and other seminal documents developed as the work of the Ad Hoc Committee got underway, including the US National Council on Disability’s White Paper and its accompanying Reference Tool, both of which emphasized the importance of including language on international cooperation in the treaty text.82 Also of note was the understanding by the disability community that the mainstream human rights community had failed to integrate disability into its work, notwithstanding reporting by the Special Rapporteur on Disability of egregious human rights violations against persons with disabilities.83 Recognition that violations of human rights were ubiquitous ‘in all parts of the world’ signalled also the understanding that disability exclusion is a universal problem, including in countries with the most robust anti-discrimination frameworks. An implicit message in the paragraph is the sense that the global human rights movement had not brought such violations to light.
3.12 Paragraph (l) Preambular paragraph (l) recognizes the role that international cooperation plays especially in developing country contexts. This both underscores the frequent concern expressed during the drafting of the CRPD that international cooperation is essential in order for developing countries to meet their obligations and further, that international cooperation is a two-way street, hence the wording ‘in every country’. The term, however, ubiquitous in international environmental treaties and not unfamiliar to human rights treaty texts, was nonetheless controversial. Inasmuch as donor governments were (and continue to be) concerned that the CRPD would confer untenable financial obligations—think here, widespread retrofitting of schools, public buildings, transport systems—it was not an easy concept to import into the CRPD. The proposal of Mexico placed the topic squarely on the agenda and indeed Mexico was the facilitator of article 32, the resulting operative provision on international cooperation in the CRPD. The draft preambular text on international cooperation, however, was footnoted twice in the Working Group text. This was an indication of the objection of some delegations to its inclusion at all and the desire to postpone its consideration until determination of whether international cooperation would be addressed in the operative part of the text.84
82 For the Quinn/Degener report, see Gerard Quinn and Theresia Degener, Human Rights and Disability: The Current Use and Future Potential of the United Nations Human Rights Instruments in the Context of Disability (OHCHR 2002); see National Council on Disability, ‘A White Paper—Understanding the Role of an International Convention on the Human Rights of People with Disabilities’ (National Council on Disability, 12 June 2002); National Council on Disability, ‘Understanding the Potential Content and Structure of an International Convention on the Human Rights of People with Disabilities: A Reference Tool Providing Sample Treaty Provisions Drawn from Existing International Instruments’ (National Council on Disability, July 2002) 55–59. 83 Leandro Despouy, ‘Human Rights and Disabled Persons’ (United Nations 1993) paras 179–82. 84 Footnote 4 of the Working Group text proposed the following language: ‘Recognising the importance of international cooperation for improving the living conditions of persons with disabilities in every country, in particular in the developing countries.’ See Working Group Draft (n 24) fn 4.
lord
Preamble
21
In its original formulation in the Working Group text,85 emphasis is placed on ‘developing countries’ in the context of international cooperation. The focus of debate on this paragraph was the interest in reflecting the bi-directional aspects of cooperation, yet efforts to drop the reference and refer only to ‘global cooperation’ on this basis were rejected. Early in the negotiations, on the occasion of the fourth review and appraisal of the World Programme of Acton by the UN Department of Economic and Social Affairs, emphasis was placed on ensuring that the link between global development and the proposed convention was maintained on the basis that this was a unique and distinguishing factor from other human rights conventions.86 By the third session, the formula put forward by the EU, Syria, and Argentina gained traction and received no further attention either from governments or NGOs.87 The link between human rights and international cooperation no longer appears, however, and instead reference is made to international cooperation to further the improvement of living conditions.
3.13 Paragraph (m) Preambular paragraph (m) recognizes the agency of persons with disabilities in society and the value of diversity. The genesis of the language came in the Bangkok draft, and made its way into the Working Group text at para (j). It was ultimately amended only slightly in the final version to emphasize the ‘valued’ existing and potential contributions and also adding language that linked full participation of persons with disabilities to ‘their enhanced session of belonging’, on the basis of amendments proposed by Canada at the fourth session.88 85 The language appeared as recital (i) in the Working Group text as follows: ‘Emphasising the importance of international cooperation to promote the full enjoyment of human rights and fundamental freedoms of persons with disabilities.’ See Working Group Draft (n 24) preamble (i). 86 The Fourth Review noted: ‘A major issue in the elaboration of the convention on the rights of persons with disabilities would be to identify options to bring the disability perspective into international development instruments, such as the Millennium development goals, that do not address specifically the situation of persons with disabilities, and to provide thereby a normative basis for the advancement of current and future generations of persons with disabilities in the context of development.’ UN DESA, ‘Fourth Review and appraisal of the World Programme of Action concerning Disabled Persons’ A/58/61-E/2003/5 (2003). 87 Ad Hoc Committee, ‘Report of the third session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC.265/2004/5 Annex (2004), ‘Compilation of proposed revisions and amendments made by the members of the Ad Hoc Committee to the draft text presented by the Working Group as a basis for negotiations by Member States and Observers in the Ad Hoc Committee’ (9 June 2004). During the third session the inclusion of language of international cooperation was supported, though it was noted that the phrase ‘in particular developing countries’ was a reflection of the tradition notion that cooperation entails a one-way transfer of resources rather than a two-way exchange. See International Service for Human Rights, ‘Summary of Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, Fourth Session’, at 2 (on file with author). 88 cf Bangkok Draft (n 5) Preamble (p). The Canadian amendments proposed:
pp(j) ‘Emphasizing the IMPORTANCE OF RECOGNIZING THE VALUED existing and potential contributions made by persons with disabilities to the overall well-being and diversity of their communities, and that the promotion of the full enjoyment by persons with disabilities of their human rights and fundamental freedoms and of full participation by persons with disabilities will result in THEIR ENHANCED SENSE OF BELONGING AND significant advances in the human, social and economic development of [DEL their societies] TO SOCIETY and the eradication of poverty,’ Fourth Session, ‘Daily summary of discussions, Preamble’, UN Convention on the Rights of People with Disabilities Vol 5 No 1 (23 August 2004).
lord
22
Preamble
It is thus one among numerous references in the CRPD to the participation of persons with disabilities in society, both in terms of personal well-being and as a major contributing factor to their communities. It acknowledges that persons with disabilities are not only beneficiaries of human rights and development but, crucially, that they are participants in such processes. This connects to the numerous references in the CRPD concerning participation, for instance as a general principle and as a general obligation of states to facilitate such participation in the making of law, policy, and programming and in other contexts. The CRPD Committee, in its work, embraces DPO participation and the participation of persons with disabilities as an ongoing and recurrent theme, and is soon to release work on article 33(3) CRPD, the provision that accords DPOs a specific role in the monitoring of CRPD implementation.89 Finally, it connects participation in decision-making to the realization of rights and to development, without which advances will not be achieved. The implications of the CRPD articulation of these obligations for international human rights law, and international law more generally, should not be lost.90 Moreover, these obligations shore up articulation of the rights to participate in decision-making for other marginalized groups, whether LGBTI persons, indigenous persons, and others.
3.14 Paragraph (n) The recognition in preambular paragraph (n) of individual autonomy and independence for persons with disabilities finds expression in article 3 CRPD, among the first of its general principles which speaks of ‘[r]espect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons.’91 It specifies, as one dimension of autonomy and dependence, the freedom to make one’s own choices, an aspect of life that is often abridged for persons with disabilities in numerous domains. The Bangkok draft included preambular language capturing the essence of the principle of autonomy in its proposed language recognizing ‘the rights of self-determination’ together with ‘the protagonist role of persons with disabilities in decision-making’.92 The paragraph made its way into the Working Group draft preamble, and received support from NGO commentators, who further urged its inclusion among the principles of the CRPD. One of the functions of the preamble is to preliminarily identify principles and objectives of the Convention. The language in paragraph (k) fulfils that function by referring to the ‘individual autonomy’ and ‘independence’ of people with disabilities.93 The voice of the World Network of Users and Survivors of Psychiatry was strongest in stressing that the preamble should avoid any medical model language, differentiating among sub-groups of persons with disabilities or referring to differences in functional capacities. Put simply, WNUSP maintained that: ‘Limiting references to autonomy, Communication with author and CRPD Committee Member Stig Langvad (30 September 2017). For more on the role of DPO participation in the CRPD drafting process and voice accountability, see Janet E Lord, ‘Disability Rights and the Human Rights Mainstream: Reluctant Gatecrashers?’ in Clifford Bob (ed), The International Struggle for New Human Rights (2009); see also Janet E Lord, ‘Mirror, Mirror on the Wall: Voice Accountability and NGOs in Human Rights Standard Setting’ (2004) 5 Seton Hall J Dipl & Int’l Rel 93. 91 92 Art 3 CRPD. Bangkok Draft (n 5) preambular para (m). 93 LSN Working Group Analysis. 89 90
lord
Preamble
23
independence and choice . . . with language like “to the extent possible” was entirely out of place in this convention.’94 Paragraph (n) reaches across the treaty into a number of other operative articles in the CRPD. The paragraph is pertinent to understanding the text adopted in articles 19, 4(3), 29, 14, and 17.95 Most notably, it connects to the transformative role played by article 12 in upending presumptions of legal incapacity and incompetence based on disability to the recognition of legal capacity and the capacity to act.96 Article 12 CRPD provides the framework within which persons with disabilities are facilitated in achieving autonomy and independence, through recognition of legal capacity and the establishment of support to decision-making, where needed. Freedom to make one’s own choices animated the debate surrounding the most challenging aspects of the negotiations, namely, the approach to be taken with regard to legal capacity and sweeping guardianship and related regimes that strip people with disabilities of all decisions, very frequently without any due process of law or possibility of review. The CRPD Committee, in its first General Comment, spelt out in further detail the implications of article 12 for autonomy.97 Scholars have underscored autonomy and independence, seeking to problematize traditional theories of autonomy that uphold the paradigm of the rational man, unfettered and essentially isolated from all influence or support in decision-making.98
3.15 Paragraph (o) Preambular paragraph (o) picks up on the concept of participation in decision-making and underscores the notion that the participation of persons with disabilities is an imperative in all decision-making processes about policies and programs, including those directly concerning them. Participation, whether as a general principle of the CRPD (article 3), a general obligation for states (article 4(3)), or its robust reflection in other CRPD articles (eg article 29 on political participation; article 33(3) on national monitoring) equally reflects the role that persons with disabilities and their representative organizations played in the process by which the CRPD was drafted.99 During the CRPD negotiations there emerged a clear recognition that stigmatized individuals must be meaningfully engaged in crafting measures required to combat stigma and discrimination, the first instance of which was the first decision taken by the Ad Hoc Committee to facilitate the participation of NGOs in the process.100 Legal advocates were 94 Fourth Session of the Ad Hoc Committee, ‘Daily Summary of Discussions’, Preamble, UN Convention on the Rights of People with Disabilities Vol 5, No 1 (23 August 2004). 95 See elsewhere commentary in this volume. 96 For a discussion of Art 12, see elsewhere in this volume. 97 CRPD Committee, ‘General Comment No 1, Article 12: Equal Recognition before the Law’ UN Doc CRPD/C/GC/1 (19 May 2014). 98 See eg Janet E Lord and Michael Ashley Stein, ‘Contingent Participation and Coercive Care: Feminist and Communitarian Theories Consider Disability and Legal Capacity’ in Bernadette McSherry and Ian Freckelton (eds), Coercive Care: Law and Policy (2013); Dan Goodley, Dis/ability Studies: Theorising Disabilism and Ableism (2008) 10; Nirmala Erevelles, ‘Material Citizens: Critical Race Theory, Disability Studies and the Politics of Education’ (2002) 1 Disability, Culture and Education 5, 12. 99 Lord (n 90); Janet E Lord, ‘A Participatory Framework for NGO Engagement in the International Legal Process’ (2001) Proc Am Soc’y Int’l L. 100 See Ad Hoc Committee’s Decision on the modalities for the participation of accredited non-governmental organizations in the Ad Hoc Committee in considering proposals for a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities, (1 August 2002).
lord
24
Preamble
highly attuned to developments in international law that sought to address requirements for participation for highly marginalized groups. The LSN Commentary on the proposed draft treaty text during the course of the negotiations sought to align the more robust language associated with indigenous peoples rights and participation to the evolving CRPD draft text. Successive commentaries prepared by NGO legal experts point to ILO Convention 169 concerning Indigenous and Tribal Peoples in Independent Countries, in particular articles 6 and 7, as the basis for the incorporation of participatory obligations into the CRPD.101 The resulting language derives from the Working Group text (paragraph l), which was included in the final text with one amendment. The term ‘especially’ was amended to read ‘including’ at the end of the paragraph, removing the implicit hierarchy associated with participation in decision-making in areas ‘especially’ concerning persons with disabilities. The resulting inference is that all decisions are important to persons with disabilities and all concern them. In so doing it exposes the weakness in the refrain: ‘Nothing about us without us.’ The simpler, phrase is perhaps more apt: ‘Nothing without us.’ Proposals in two separate NGO commentaries to strengthen the language were not taken up.102 There are two dimensions to giving voice to persons with disabilities. Stigmatization on the basis of disability can have deleterious consequences for one’s capacity to give voice and exercise agency, even in matters acutely concerning to the individual. Externally, exclusion from decisional processes offends human dignity and impacts decisional outcomes that can have long lasting consequences with highly detrimental effects on the realization of human rights.
3.16 Paragraph (p) Stigma and the discrimination it breeds is understood to be compound, multiple, or intersectional for an individual who possesses more than one attribute to which stigma and discrimination attach. During the Working Group, the Ontario Human Rights Commission observed: There is legal jurisprudence in Canada that supports the notion that individuals can face multiple or ‘intersecting’ forms of discrimination. In its majority decision in Law v. Canada,2 the Supreme Court of Canada recognized that a discrimination claim can present an intersection of grounds that are a synthesis of those listed in s. 15(1) of the Canadian Charter of Rights and Freedoms or are analogous to them.
101 ILO Indigenous and Tribal Peoples Convention, C169 (27 June 1989) C169. For references to that Convention, see Janet E Lord and Katherine N Guernsey, ‘Understanding the Potential Content and Structure of an International Convention on the Human Rights of People with Disabilities: A Reference Tool Providing Sample Treaty Provisions Drawn from Existing International Instruments’ (National Council on Disability 2002) 10–11. 102 The LSN Commentary notes the language referring to the importance of participation of people with disabilities in decision-making processes and observes ‘that this is a weaker formulation than that used in the Vienna Declaration, which uses the word “essential”. Vienna Declaration and Programme of Action, UN Doc A/CONF.157/23 (25 June 1993) para 5’. See LSN Commentary. Australian DPOs, picking up on this idea, proposed in 2004 that the paragraph be ‘strengthened’ by using the term ‘recognising’ to introduce the paragraph rather than ‘considering’ on the basis that this would clarify for states an affirmative acceptance of the principle and further argued for the concept of participation in decision-making to be referred to as ‘essential’ and as a ‘condition precedent’ to the enjoyment of the human rights provided in this and other human rights instruments, citing the fundamental principle put to the Ad Hoc Committee by the International Disability Caucus on numerous occasions in the debate to date: ‘nothing about us, without us’; PWD Australia (n 42).
lord
Preamble
25
The Commission has dealt with a number of cases where the ground of disability intersects with other enumerated grounds of discrimination as well as other factors such as language. The Commission has published a discussion paper on the broader topic: An intersectional Approach to Discrimination Addressing Multiple Grounds in Human Rights Claims.103
This is unquestionably the case for persons with disabilities who are disproportionately poor, an issue compounded by the inaccessibility of schools, training programs, and employment opportunities. As noted by Cera, recital (p) is a novel expression in the lexicon of human rights treaties insofar as the terms ‘multiple’ and ‘aggravated’ find no parallel in the core human rights conventions.104 During the final phase of the negotiations, the importance of integrating a gender perspective across the treaty text, as well as including discrete provisions on women and children was stressed, along with the importance of reinforcing the specific risks these groups experience and the impact of intersectionality on their rights.105 The human rights architecture, with its traditional singular focus on anti-discrimination connecting to one particular ground—race, or gender, or other single characteristic—has both oversimplified individual experience of discrimination and complicated access to anti-discrimination protections rooted in discrimination based on a single ground. The CRPD preamble contributes to the conceptualization of complex forms of discrimination in intersectional terms. This conception has gained traction, as reflected in human rights practice. In the report of the Special Rapporteur on the Right to Health, this notion was underscored in the examination of mental health where it was noted that ‘[m]ultiple and intersectional forms of discrimination continue to impede the ability of individuals, including women and persons from racial and ethnic minorities with disabilities, to realize their right to mental health.’106 This dimension has also generated considerable scholarly commentary since the adoption of the CRPD.107
3.17 Paragraph (q) Recital (q) picks up on the notion of enhanced risk rooted in the intersection of multiple markers of risk. It reflects, therefore, the emerging evidence introduced during the negotiations of the disproportionate risk of violence that women and girls with disabilities face relative to their non-disabled counterparts or to disabled men.108 This recognition led to
103 Ontario Human Rights Commission, Comments on the Draft Text, preamble. The case cited in the submission is: Law v Canada (Minister of Employment and Immigration) [1999] 1 SCR 497. 104 As Cera notes, however, the 1995 Beijing Declaration refers in paragraph (n) to ‘multiple or aggravated forms of discrimination’ specifically in the context of discrimination against women. Rachele Cera, ‘Preamble’ in Valentina Della Fina, Rachele Cera, and Giuseppe Palmisano (eds), The United Nations Convention on the Rights of Persons with Disabilities: A Commentary (Springer 2017) 77, 85. For the reference in the Beijing Declaration, see UN Beijing Declaration and Platform of Action, adopted at the Fourth World Conference on Women UN Doc A/CONF 177/20 (1995) and UN Doc A/CONF 177/20/Add 1 (1995). 105 New Zealand Human Rights Commission, ‘Position Paper, International Convention on the Promotion and the Protection of the Rights and Dignity of Persons with Disabilities’ (July 2006) 3. 106 Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health UN Doc A/HRC/25/21 (28 March 2017). 107 Oddny M Arnardóttir, ‘A Future of Multidimensional Disadvantage Equality?’ in Oddny M Arnardóttir and Gerard Quinn (eds), The United Nations Convention on the Rights of Persons with Disabilities: European and Scandinavian Perspectives (Martinus Nijhoff 2009) 41. 108 See Women’s Caucus paper, ‘Towards a Gender Sensitive Disability Right Convention’ (24 June 2004) (on file with author).
lord
26
Preamble
its explicit recognition in the preamble. It also reflects the fact that women and girls with disabilities face risk in personal and private realms (‘within and outside the home’) and that exposure to risk takes many forms, including not only acts of violence and abuse, but also neglect and negligence. Primary credit for the strong gender inclusion across the CRPD text goes to the leadership of Korean Women with Disabilities, who successfully, with the support of their government, proposed a specific article housed in the general and cross-cutting obligations of article 6 CRPD.109 This effort was supported by the Women’s Caucus within the network of NGOs participating in the Ad Hoc Committee and women advocates were vocal about the need to specifically reference the vulnerability of women and girls with disabilities in the Convention. Language that specifically referred to the ‘gender based manifestations’ of violence and abuse at the end of recital (q) were deleted in the final text. Since the adoption of the CRPD, this has been borne out in numerous studies, most notably the first World Report on Disability, published by the World Health Organization and the World Bank in 2011,110 studies by the OHCHR,111 the Special Rapporteur on Violence against Women,112 the work of the United Nations Population Fund,113 and the concluding observations by the CRPD Committee.114 Exposure of women with disabilities to exploitation is increasingly understood by human rights organizations, as evidenced by the work exposing instances of violence and abuse against women with disabilities and the risks associated to trafficking concerning women with disabilities.115 109 A Facilitator was appointed to address gender integration across the text and, during the August 2005 session of the Ad Hoc Committee, a paper was introduced covering proposed inputs from the Preamble, operative provisions, and monitoring articles. See Ad Hoc Committee, sixth session, ‘Disabled Women (Facilitator’s proposal)’ (8 August 2005) (on file with author). 110 World Health Organization & World Bank Group, ‘World Report on Disability’ (2011). 111 OHCHR, ‘Thematic Study on the Issue of Violence against Women and Girls and Disability’ UN Doc A/HRC/4 20/5 (2012) para 26. 112 See ‘Report of the Special Rapporteur on violence against women, its causes and its consequences’ UN Doc A/67/227 (2012) para 13. 113 WHO/UNFPA, ‘Promoting Sexual and Reproductive Health for Persons with Disabilities: Guidance Note’ (2009). 114 CRPD Committee, ‘Concluding Observations on the Initial Report of Belgium’ UN Doc CRPD/C/ BEL/CO/1 (13 March 2013) para 30; CRPD Committee, ‘Concluding Observations on the Initial Report of Australia’ UN Doc CRPD/C/AUS/CO/1 (21 October 2013) para 16; CRPD Committee, ‘Concluding Observations on the Initial Report of China’ UN Doc CRPD/C/CHN/CO/1 (15 October 2012) paras 57, 65, and 90; CRPD Committee, ‘Concluding Observations on the Initial Report of El Salvador’ UN Doc CRPD/C/SLV/CO/1 (8 October 2013) para 37; CRPD Committee, ‘Concluding Observations on the Initial Report of the Czech Republic’ UN Doc CRPD/C/CZE/CO/1 (15 May 2015) para 34; CRPD Committee, ‘Concluding Observations on the Initial Report of Mauritius’ UN Doc CRPD/C/MUS/CO/1 (30 September 2015) para 29; CRPD Committee, ‘Concluding Observations on the Initial Report of New Zealand’ UN Doc CRPD/C/NZL/1 (1 October 2013) para 37; CRPD Committee, ‘Concluding Observations on the Initial Report of Gabon’ UN Doc CRPD/C/GAB/CO/1 (2 October 2015) para 40; CRPD Committee, ‘Concluding Observations on the Initial Report of Kenya’ UN Doc CRPD/C/KEN/CO/1 (30 September 2015) para 33; CRPD Committee, ‘Concluding Observations on the Initial Report of the Dominican Republic’ UN Doc CRPD/C/DOM/CO/1 (8 May 2015) para 33; CRPD Committee, ‘Concluding Observations on the Initial Report of Paraguay’ UN Doc CRPD/C/PRY/CO/1 (15 May 2013) para 16. See also UNGA Res 63/150, ‘Realizing the Millennium Development Goals for Persons with Disabilities’ (18 December 2009) (calling on states ‘to enable persons with disabilities to participate as agents and beneficiaries of development, in particular in all efforts aimed at achieving the Millennium Development Goals by ensuring that programmes and policies to promoting gender equality and empowerment of women and improving maternal health, among others, are inclusive of and accessible to persons with disabilities’ (operative paragraph 6). 115 Disability Rights International, Application for precautionary measures in favor of the 334 people with mental disabilities interned in the Federico Mora Hospital, in Guatemala (12 October 2012), available at: .
lord
Preamble
27
3.18 Paragraph (r) Paragraph (r) picks up on the recognition first set forth in the Convention on the Rights of the Child (CRC) that disability is a specifically prohibited ground of discrimination. Article 2(1) CRC, unlike other core human rights conventions, explicitly listed disability among its grounds of prohibited discrimination against children. Of note is the other disability-specific provision in the CRC, article 23, which was roundly criticized during the course of the CRPD negotiations for language that appeared to circumscribe full and complete protection of the rights of children with disabilities on an equal basis with others.116 The offending language in article 23 CRC concerned a disabled child’s ‘achieve[ment] of the fullest possible social integration and individual development’.117 The CRPD arguably redresses this concern, both in terms of integrating age considerations across the CRPD text, as well as by including among its general obligations article 7 on children with disabilities.118 That provision clarifies that children with disabilities are entitled to all human rights and fundamental freedoms on an equal basis with other children and affirms the principle of the best interests of the child and the right to participation in line with the CRC, with these latter two elements reflecting two of the central principles of the CRC, as applied to children with disabilities. The first years of CRPD Committee practice indicate the prevalence of outmoded perceptions about children with disabilities insofar as national platforms on children with disabilities tend to be very narrowly focused on the prevention and early detection of disability, the limited participation of children with disabilities, and the fact that children with disabilities remain at risk.119
3.19 Paragraph (s) Preambular paragraph (s) addresses the recognition, frequently cited on the floor of the Ad Hoc Committee, that there is a significant gender dimension to the human rights of persons with disabilities. The gender dimension most frequently referenced during the negotiations was the disproportionate impact of discrimination on women and girls with disabilities. Early in the negotiations, in June 2003, advocates supporting a gender-sensitive convention convened and issued a document, Towards a Gender Sensitive Disability Rights Convention which supported, among other things, ‘ways to integrate gender sensitive areas of concern into a disability rights convention’.120 This meeting was the genesis of the Women’s Caucus, formed to ensure that issues pertaining to gender 116 Janet E Lord, ‘Child Rights Trending: Accommodating Children with Disabilities in the Global Human Rights Framework and US Foreign Policy’ (2017) 16 Whittier Journal of Child and Family Advocacy 1. 117 118 Art 23 CRC. See commentary on Art 7 CRPD in this volume. 119 See eg CRPD Committee, ‘Concluding Observations on the Initial Report of Austria’ UN Doc CRPD/C/AUT/CO/1 (13 September 2013) para 17; CRPD Committee, ‘Concluding Observations on the Initial Report of Ecuador’ UN Doc CRPD/C/ECU/CO/1 (27 October 2014) para 16; CRPD Committee Concluding Observations on Slovakia (n 114) paras 17, 51; CRPD Committee, ‘Concluding Observations on the Initial Report of Mexico’ UN Doc CRPD/C/MEX/CO/1 (27 October 2014) para 13; CRPD Committee Concluding Observations on El Salvador (n 114) para 17; CRPD Committee, ‘Concluding Observations on the Initial Report of Sweden’ UN Doc CRPD/C/SWE/CO/1 (12 May 2014) para 13; CRPD Committee, ‘Concluding Observations on the Initial Report of Azerbaijan’ UN Doc CRPD/C/AZE/CO/1 (12 May 2014) para 16; CRPD Committee, ‘Concluding Observations on the Initial Report of Korea’ UN Doc CRPD/ C/KOR/CO/1 (29 October 2014) para 13. 120 Joint Statement, Towards a Gender Sensitive Disability Rights Convention, 24 June 2003 (paper on file with author).
lord
28
Preamble
and discrimination against women and girls with disabilities were fully addressed during the negotiation process. This notion was generally supported by governments, with the European Union in its ‘Elements for an International Convention’ proposing that a future convention, in the preamble should: ‘Emphasize the incorporation of a gender perspective in all efforts to promote the full and equal enjoyment of human rights and fundamental freedoms by persons with disabilities.’121 This preambular language on gender integration preceded the inclusion of a specific article on women with disabilities. In referring to a ‘gender perspective’ in preambular paragraph (s), there is an implicit acknowledgement of the multifaceted intersection between disability and gender that extends beyond discrimination on the basis of biological sex. Since the adoption of the CRPD, successive treaty bodies have taken into account the gender-specific dimensions of disability in their work. For example, both the HR Committee and the CAT Committee have issued recommendations to states parties regarding violence against women with disability and the forced sterilization of women and girls with disability falling within the scope of their respective treaty mandates.122 The Committee on the Rights of the Child has made similar recommendations in the context of children with disability, paying particular attention to gender.123 Further, the CEDAW Committee has likewise issued calls for urgent action by states in relation to women with disability, particularly in relation to the pervasive and high incidence of violence perpetrated against women and girls with disabilities, especially those living in institutions or otherwise supported.124
3.20 Paragraph (t) The first part of preambular paragraph (t) gives recognition to the fact that persons with disabilities very often live in poverty. The point is perhaps an obvious one inasmuch as the vast majority of persons with disabilities lives in developing countries, but empirical evidence supports that person with disabilities are more likely to live among the poorest of the poor in those countries and, further, that disability is strongly correlated with poverty in any society, whether developed or developing.125 The issue of disability and poverty did arise in the context of discussions on the preamble in preparatory meetings held in both Quito and Bangkok.126 The Chair’s text 121 Hellenic Presidency of the European Union, Second session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities (16–27 June 2003), ‘Elements of an International Convention’ (23 June 2003), at preamble. 122 Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, Committee against Torture, ‘Concluding Observations on the Combined Fourth and Fifth Periodic Reports of Australia’ UN Doc CAT/C/AUS/CO/4–5 (23 December 2014); UN HRCtee ‘List of Issues prior to the Submission of the Sixth Periodic Report of Australia’ UN Doc CCPR/C/AUS/6 (15 October–2 November 2012); UN Doc CCPR/C/AUS/Q/6 (9 November 2012). 123 CRC Committee, ‘Concluding Observations on the Report of Australia’ UN Doc CRC/C/AUS/CO/ 4 (28 August 2012). 124 CEDAW Committee, ‘Concluding Observations on the Report of Australia’ UN Doc CEDAW/C/ AUS/CO/7 (30 July 2010). 125 See generally World Bank and World Health Organization, ‘World Report on Disability’ (2011). 126 The Bangkok meeting inserted a reference to ‘extreme poverty’ as one among many social factors impacting persons with disabilities in a preambular paragraph and the Quito meeting proposed specific language: ‘Recognizing that poverty leads to a greater prevalence of disability, which, in turn, generates poverty, such that we must adopt measures to combat it;’.
lord
Preamble
29
introduced to the Working Group did not contain a separate paragraph on the issue, but did draw a connection between the human rights of persons with disabilities and the eradication of poverty in one of its proposed paragraphs.127 The first clause in the paragraph was added alongside several preambular additions to the Chair’s text at the Working Group session in 2004, with the initial text reading as follows: ‘Mindful of the need to alleviate the negative impact of poverty on the conditions of persons with disabilities.’128 A footnote to the text indicated that some delegates were unsure about the language and indeed it was revisited and subject to numerous suggested amendments.129 The ultimate formulation combines two principal concerns, first, that persons with disabilities are disproportionately impacted by poverty and second, the necessity of addressing the impact of poverty on disabled persons. Repeated observations of the CRPD Committee underscore the linkage between poverty and disability as an important recurring theme and often the Committee points to the compounding and intersectional impact of poverty on persons with disabilities who are migrants, live in rural areas, or who belong to a highly marginalized ethnic group (eg Roma).130
3.21 Paragraph (u) Maintenance of peace and security is a principal purpose of the UN, as reflected in the preamble of the UN Charter, and appears as the first enumerated purpose of the Organization. Unlike the wording in the Charter, the preambular language in the CRPD enunciates the connection between peace and security and the full protection of persons with disabilities. It recognizes, in particular, the insecurity posed by armed conflict and foreign occupation for persons with disabilities, as borne out by conflicts occurring during the time period in which the CRPD was under negotiation. However apparent the nexus, the negotiations surrounding the terms used were hotly contested, lasting until the final minutes of the work of the Ad Hoc Committee and holding up the vote on the adoption of the treaty text.131 Some additional background is warranted. The idea for a separate article addressing the protection of persons with disabilities in armed conflict was raised during preparations prior to the Working Group at the Beirut meeting and rose again at the Working Group with the result that a brief paragraph was included expressing concern ‘that situations of armed conflict have especially devastating consequences for the human rights of persons with disabilities’.132 Further, reference is made in a footnote to the provision in 127 See ‘Chair’s Draft Elements of a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities: Draft elements for inclusion in a preamble’ (7 January 2004) (‘Emphasizing the existing and potential contributions made by persons with disability to the overall well-being and diversity of their communities, and that the promotion of the full enjoyment by persons with disabilities of their human rights and fundamental freedoms and of full participation by persons with disabilities will result in significant advances in the human, social and economic development of their societies and the eradication of poverty.’); ibid para (h). 128 129 See Working Group Draft. ibid fn 6. 130 See eg CRPD Committee, ‘Concluding Observations on the Initial Report of Croatia’ UN Doc CRPD/ C/HRV/CO/1 (15 May 2015) paras 43–44. 131 See ‘Interim Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its Eighth session’ UN Doc A/AC265/2006/4 (2006) para 11 (Noting that on 25 August, at its 20th meeting, the Ad Hoc Committee adopted preambular paragraph (s)bis of the text of the Convention by a recorded vote of 102 to 5 with 8 abstentions); ibid. 132 Working Group Draft at (p).
lord
30
Preamble
the Working Group draft on the right to life in respect of the protection of persons with disabilities in armed conflict.133 The suggestion was made that the Convention should contain a separate draft article on the protection of the rights of persons with disabilities in armed conflict, similar to the approach taken in article 38(4) of the Convention on the Rights of the Child, and one strongly supported by civil society organizations.134 The NGO Save the Children, for instance, noted ‘the global increase in situations of unrest, conflict, and disaster, which poses extra risks for children and adults with disabilities upon the chance for survival and development’135 and argued not for a preambular reference, but for a second paragraph to the draft article on the right to life. The resulting paragraph (u) of the preamble is integrally connected to the provision that became article 11 CRPD, on the protection of persons with disabilities in situations of risk. Language offensive to some states, most notably the United States and Israel who objected to the term, ‘foreign occupation’ was deleted from early proposals of article 11 and housed in the preamble as a compromise. Notwithstanding the compromise and the appearance of the term ‘foreign occupation’ outside the operative provisions of the CRPD, the United States held fast to its objection. This resulted in a last minute forced vote on the inclusion of the paragraph. With minutes before the Ad Hoc Committee was to adjourn, and with the adoption of the entire final version of treaty text hanging in the balance, delegates quickly moved to a conference hall equipped with voting machinery, interpreters agreed to hang on past their appointed time of work, and the vote was taken. The interrelationship between human rights and international humanitarian law as reflected article 11 CRPD is, interestingly, making its way into international humanitarian law treaty preambles, as in the following paragraph of the preamble to the Convention on Cluster Munitions which reads: Bearing in mind the Convention on the Rights of Persons with Disabilities which, inter alia, requires that States Parties to that Convention undertake to ensure and promote the full realisation of all human rights and fundamental freedoms of all persons with disabilities without discrimination of any kind on the basis of disability.136
Of even greater consequence is the progressive development of a disability-inclusive sensibility in global disaster risk reduction policies, climate change frameworks, and humanitarian action in emergencies more generally.137
133 The footnote provides: ‘Some members of the Working Group suggested that the Convention should contain a separate draft article on the protection of the rights of persons with disabilities in armed conflict, similar to the approach taken in Article 38(4) of the Convention on the Rights of the Child.’ See Working Group Draft (n 24) fn 31. 134 Among those DPOs supporting the inclusion of paragraph (p) in the Working Group Draft was the European Disability Forum, which proposed the additional reference to terrorism and natural disaster. See European Disability Forum, ‘Compilation of Comments on Articles of the Draft Text of the Working Group’, preamble at 2. 135 136 ibid 41. Convention on Cluster Munitions, adopted 30 May 2008, 2688 UNTS 39. 137 Office of the High Commissioner for Human Rights, ‘Thematic study on the rights of Persons with Disabilities: Article 11 of the CRPD’ (2016), available at: .
lord
Preamble
31
3.22 Paragraph (v) The Bangkok draft138 included language in the preamble on accessibility, combined with equality of opportunity in all human rights realms. That language tapped the Mexico proposal, which referred to ‘equality of opportunities in the exercise of all human rights’ together with ‘accessibility to the physical environment’139 and the Venezuelan proposal, which mentioned ‘access to the physical, economic, social and cultural environment’.140 Amendments to the text decoupled equality of opportunities from accessibility and, in so doing, elevated accessibility to a central status in the paragraph. Thus, the Working Group text refocused the paragraph on accessibility and broadened its scope to include accessibility to the ‘physical, social, and economic environment and to information and communications technologies’.141 Proposed amendments by South Africa and Yemen at the third session of the Ad Hoc Committee to include reference to the ‘political’ environment were not taken up. The LSN Commentary noted that the draft language for this paragraph in the Working Group text (paragraph q) reflected the major target areas for equal participation set forth in rules 5–12 of the UN Standard Rules and underscored the concept of accessibility as one of the fundamental principles of the paradigmatic shift in the perception of disability in society.142 Following the Working Group, amendments were accepted to further broaden the scope of the paragraph, to include accessibility to ‘health and education’ and by the seventh session it had attained its current formulation. Accessibility was one of the first concepts addressed by the CRPD Committee and is the subject of its second General Comment.143 While there was overwhelming consensus during the negotiations that accessibility was a fundamental concept to be addressed in the context of human rights and disability, its nature is not fully articulated and is made more challenging by its reappearance across the treaty text, as a principle, general obligation, and as a constituent element of specific obligations.144
3.23 Paragraph (w) The Preamble in paragraph (w) reflects the idea, first set forth in the UDHR, that the enjoyment of human rights also implies the performance of duties on the part of rights holders.145 The text for the paragraph was introduced relatively late in the negotiation and did not give rise to extensive discussion. An amendment put forward by Canada to refer not to the rights set forth in the International Bill of Human Rights, but instead to the ‘present Convention’ were not taken up.146 In that sense the paragraph reflects recognition that the rights and responsibilities of the three foundational human rights
139 140 Bangkok Draft at preamble para (g). Mexico Draft. Venezuela Draft at (k). 142 Working Group Draft at (p). LSN Working Group Commentary. 143 CRPD Committee, ‘General Comment No 2, Article 9: Accessibility’ UN Doc CRPD/C/GC/2 (22 May 2014). 144 For further discussion on the nature of accessibility, see Janet E Lord, ‘Accessibility and Human Rights Fusion in the CRPD: Assessing the Scope and Content of the Accessibility Principle and Duty under the CRPD’, Presentation for the General Day of Discussion on Accessibility, CRPD Committee, UN—Geneva (7 October 2010). 145 Art 29(1) UDHR provides: ‘Everyone has duties to the community in which alone the free and full development of his personality is possible.’ 146 See ‘Proposed modifications by governments during the Eight Session of the Ad Hoc Committee’, Preamble, at (u), Canada. 138 141
lord
32
Preamble
instruments are applicable to persons with disabilities, while further implicitly recognizing that the rights and responsibilities of persons with disabilities in the CRPD are indeed derived from those instruments. It thus reinforces the notion that the CRPD is firmly rooted in the existing human rights law framework. The individual duties to which this paragraph refers encompass three sets of duties, namely: (1) duties on individuals vested with state authority to respect, promote, and protect human rights; (2) duties to exercise one’s rights responsibly; and (3) general duties individuals have towards others and their community.147 The pertinent UDHR provision reflected an attempt to strike a balance between individual freedom and the rights of others and the legitimate demands of the community and the state. The two international covenants include in their preambles an identical reference to individual duties, which is based on the UDHR.
3.24 Paragraph (x) Penultimate preambular paragraph (x) addresses the concern expressed during the negotiations that the family was not sufficiently addressed in the text of the CRPD. No proposed text early on in the process prior to the Working Group mentioned the family or its role in relation to society, or in respect of persons with disabilities specifically.148 In the Working Group text, mention was made of families in the draft article on adequate standard of living and the reference in a footnote to that provision queried how family should be defined so that it may fit into the pertinent provision.149 The settled text came late in the process, introduced as paragraph (v bis), alongside amendments to article 23. The resulting text that emerged is thus a compromise, giving a nod to some of the more conservative elements among delegations, but also to countries’ concern that the Convention should not undermine the role that families play in the lives of disabled family members. The main thrust of the CRPD with regard to families lies in its firm recognition that persons with disabilities enjoy their rights within the family and their right to found a family. It was recognized by the drafters that families did play important roles and could in fact further the rights of persons with disabilities but at the same time, its placement in the preamble also reflects the strongly held view, especially among civil society groups, that this was first and foremost a treaty on the rights of persons with disabilities. It further reflects an unease among some that families are, in many cases, serious violators of the rights of their disabled family members. To that end, article 8 affirms the need for awareness-raising within the family.150
3.25 Paragraph (y) The final preambular paragraph included language drawn from the initial UNGA resolution that created the Ad Hoc Committee in the first place. It also reflects the name ascribed to the Ad Hoc Committee—the Ad Hoc Committee on a ‘comprehensive and integral international convention to promote and protect the rights and dignity of 147 International Council on Human Rights, Taking Duties Seriously: Individual Duties in International Human Rights Law: A Commentary (1999) 15. 148 Ad Hoc Committee, ‘Compilation of Proposals for Elements of a Convention’ (19 December 2003) (December 2003 Compilation). 149 150 Working Group Draft (n 24) fn 102. Art 8(1)(a) CRPD.
lord
Preamble
33
persons with disabilities’ and echoes the initial title of the draft treaty before the decision to simplify—and thereby make more accessible—its title.151 Of particular note is the fact that the language here reflects the ultimate decision of the Ad Hoc Committee to go with a convention addressing all human rights, civil, political, economic, social, and cultural, as opposed to a more abridged version indicated by some governments early on in the Ad Hoc Committee process.152 The language in recital (y) made a first appearance in the Bangkok draft as elements of two separate preambular paragraphs (o) and (p).153 In the Working Group draft, it appears as the final recital (r), where it retained all of its elements throughout the negotiations with the exception of the amendment that substituted the name of the Ad Hoc Committee for the generic reference to a convention that first appeared in the Working Group draft. That proposal was elaborated during the seventh session by China, Mexico, Uganda, and Russia.154 In that respect it achieves continuity between the UNGA resolution that established the Ad Hoc Committee and its resulting work. Further, like that resolution, the language underscores the recognition of the fact that disability is a developmental issue and also reflects the broad participation in the negotiation by developing countries. While social disadvantage of persons with disabilities is pervasive and persistent in developed and developing countries alike, the reality is that among the world population of persons with disabilities, 80 per cent live in developing countries.155 And 20 per cent of these persons live in extreme poverty and thus experience profound social disadvantage.156 A proposal not taken up by the Ad Hoc Committee was the Chilean amendment to add language noting that the convention would ‘contribute significantly to improving the Human Development Index’.157 The paragraph ties together disability within the broad framework of human rights, highlights the social disadvantage that so severely impacts rights enjoyment by disabled persons, and emphasizes that disability is an issue for development. From this paragraph follows the idea that the CRPD fills an existing gap in the international human rights framework and has implications for the realization of all
151 See Comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities (9 December 2001) UNGA Res 56/168 (19 December 2001) para 1. 152 eg Australia initially called for a treaty annexed to the Covenant on Economic, Social and Cultural Rights—see Second Session of the UN Ad Hoc Committee on a Comprehensive and Integral Convention on the Rights and Dignity of Persons with Disabilities, Statement by H E Mr Peter Tesch, Australian Mission to the UN, 17 June 2003 (arguing for an annex to an existing treaty to address the rights of persons with disabilities). The European Union, in its Principles paper, clearly favoured a limited, non-discrimination approach more such as the CEDAW rather than the CRC. See Hellenic Presidency of the European Union, Second session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities (16–27 June 2003), ‘Elements of an International Convention’ (23 June 2003). 153 (o) Recognizing the profound social disadvantage of persons with disabilities, in both developing and developed countries, and the important contribution that a convention dealing specifically with the human rights of persons with disabilities could make to redressing this disadvantage. 154 Ad Hoc Committee, Seventh Session, ‘Proposed Modifications by Governments: Proposal by China’. 155 See World Bank and World Health Organization, ‘World Report on Disability’ (2011). 156 See International Federation of the Red Cross and Red Crescent Societies, ‘World Disaster Report 2007’ (IFRC 2007) 87, available at: . 157 See Ad Hoc Committee, Fourth Session, ‘Compilation of Comments, Proposals and Amendments submitted electronically: Chilean Proposal’.
lord
34
Preamble
human rights and, equally, for inclusive development. In that sense, it echoes across the treaty to article 32 in bringing disability inclusion in development into a human rights fold, a domain of the treaty for which state practice is readily apparent; for instance, in moves to ensure that frameworks on natural disasters are inclusive of persons with disabilities and that humanitarian actors seek to ensure inclusive practices in their assistance work.158
158 See eg Sendai Framework for Disaster Risk Reduction, (UNISDR 2005). For an overview of these developments, see Janet E Lord, ‘Desk Review on the Inclusion of Persons with Disabilities in Humanitarian Action’ (Inter-Agency Standing Committee Task Team on Inclusion of Persons with Disabilities in Humanitarian Action, August 2017).
lord
Article 1 Purpose The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.
Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.
1. Introduction 2. Background and Travaux Préparatoires 2.1 Purpose (Article 1, Paragraph 1) 2.2 Description of ‘Disability’ (Article 1, Paragraph 2) 3. Paragraph 1 3.1 ‘The purpose of the present Convention’ 3.2 ‘to promote, protect, and ensure’ 3.3 ‘full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities’ 3.4 ‘to promote respect for their inherent dignity’ 4. Paragraph 2 4.1 ‘Persons with disabilities’ 4.2 ‘include those who have long-term physical, mental, intellectual or sensory impairments’ 4.3 ‘which in interaction with various barriers’ 4.4 ‘may hinder their full and effective participation in society’ 4.5 ‘on an equal basis with others’
35 39 40 44 48 48 49 50 50 53 54 55 57 57 58
1. Introduction Article 1 sets out the purpose of the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) and describes its target group. The CRPD is the only core UN international human rights convention to have a separate article entitled ‘purpose’,1 and the second to include a description of its target group as an identifiable group in one of its articles.2 Article 1 enshrines a ‘paradigm shift’ in approach to the concept of ‘disability’ in international human rights law: a shift from an approach underpinned by a ‘medical model of disability’ that views persons with disabilities as ‘objects’ 1 Office of the High Commissioner for Human Rights (OHCHR), ‘The Core International Human Rights Instruments and their monitoring bodies’ (OHCHR 2017), available at: ; Arlene S Kanter, The Development of Disability Rights under International Law from Charity to Human Rights (Routledge 2015). 2 Art 1 CRC.
kakoullis and ikehara
36
Purpose
of medical treatment and in need of charity; to a ‘social model of disability’, which views persons with disabilities as ‘subjects’ with rights and focuses on the barriers persons with disabilities face that may hinder their societal participation.3 The provision’s content, particularly the resulting description of persons with disabilities, was ‘among the most controversial’,4 with the final version of article 1 only finalized during the last Ad Hoc Committee session. Article 1 provides a framework for the teleological interpretation of the CRPD’s provisions.5 The inclusion of a provision stating the ‘purpose’ of the CRPD is significant under international law.6 This is because in accordance with the Vienna Convention on the Law of Treaties (VCLT), no state party can formulate a reservation that ‘is incompatible with the object and purpose of the treaty’.7 It is noted that no state party to the CRPD has lodged any declaration or reservation to article 1, unlike in respect of other controversial articles, such as article 12—equal recognition before the law.8 Stein and Lord suggest that the protection afforded to the purpose of the treaty also extends to the conceptualization of ‘disability’ set out in article 1, paragraph 2, by virtue of its inclusion in the provision dedicated to the CRPD’s purpose.9 The CRPD is a thematic convention that focuses on persons with disabilities’ human rights, whereas previous core UN human rights conventions failed to adequately protect such rights.10 The objective of article 1, paragraph 1, is to ensure that persons with disabilities enjoy all the human rights set out in existing UN international core human rights conventions equally with non-disabled persons.11 This provision complements the core UN human rights conventions, as it tailors the relevant norms of existing core human rights conventions to the circumstances of persons with disabilities.12 Article 1, paragraph 2, and preambular paragraph e, provide a description, rather than a definition, of the persons whose human rights the CRPD aims to protect. This description of ‘persons with disabilities’ is underpinned by a ‘social model of disability’.13
3 Statement by Louise Arbour to the Resumed 8th Session of the Ad Hoc Committee on the CRPD (5 December 2006); Rosemary Kayess and Paul French, ‘Out of Darkness into Light? Introducing the Convention on the Rights of Persons with Disabilities’ (2008) 8 HRLR 1; Gerard Quinn and Oddny Mjoll Arnadottir, ‘Introduction’ in Gerard Quinn and Oddny Mjoll Arnadottir (eds), The UN Convention on the Rights of Persons with Disabilities European and Scandinavian Perspectives (Martinus Nijhoff 2009); Kanter (n 1). 4 5 Kayess and French (n 3). Art 2 CRPD is also interpretive; ibid. 6 Michael Ashley Stein and Janet E Lord, ‘Future Prospects for the United Nations Convention on the Rights of Persons with Disabilities’ in Quinn and Arnadottir (n 3). 7 Art 19(c) VCLT. 8 List of Declarations and Reservations to the CRPD, 2515 UNTS 3 (Status as at 20 October 2017). 9 Stein and Lord (n 6). 10 There is one exception to the thematic core conventions, this concerns the Convention on the Rights of the Child (1989), which makes reference to ‘disability’ in Art 2 and ‘disabled child/ren’ in Art 23; Valentina Della Fina, ‘Article 1 [Purpose]’ in Valentina Della Fina, Rachele Cera, and Guiseppe Palmisano (eds), The United Nations Convention on the Rights of Persons with Disabilities—A Commentary (Springer 2017); Bernadette McSherry, ‘The United Nations Convention on the Rights of Persons with Disabilities’ (2009) 16(1) Journal of Law and Medicine; Kayess and French (n 3). 11 Della Fina (n 10); Anna Lawson, ‘The United Nations Convention on the Rights of Persons with Disabilities: New Era or False Dawn?’ (2007) 34 Syracuse J Intl L & Com 563. 12 Della Fina (n 10); Lawson (n 11). 13 Lisa Waddington, ‘A New Era in Human Rights Protection in the European Community: The Implications the United Nations’ Convention on the Rights of Persons With Disabilities for the European Community’ (2007) April Maastricht University Faculty of Law Working Papers 1, 1–22; Stein and Lord (n 6); Kanter (n 1).
kakoullis and ikehara
Article 1
37
This model draws a distinction between ‘impairment’ (the biological) on the one hand, and ‘disability’ (the societal) on the other hand.14 Its central thrust is that it is society (the social barriers) that disables persons who have impairments.15 This model ‘defines disability as the societal response to impairment’ and conceptualizes disability as ‘social oppression’.16 The ‘social model of disability’ rejects the ‘medical model of disability’, which focuses on, and reduces disability to, the impairment a person may have. Through the medical model of disability the ‘problem’ (of disablement) is located in the individual who needs to be ‘fixed’,17 their lives dominated by medical approaches, treatments, and experts,18 and where persons with disabilities are subject to discrimination, marginalization, exclusion, isolation, and oppression.19 Also, for many persons with intellectual disabilities, it allows denial of their agency and right to self-determination.20 Significantly, this conceptualization of ‘disability’ reserves the exercise of power over decisions concerning persons with disabilities’ lives for medical professionals, and not for persons with disabilities, themselves.21 Article 1 rejects viewing persons with disabilities as ‘objects’ to be treated and as recipients of charity and welfare; it views persons with disabilities as subjects with human rights and authors of their own lives.22 The social model of disability has been critical for persons with disabilities and the Disabled People’s Movement.23 However, it is also important to note that there are other ‘social approaches’ that share some commonalities with the social model of disability; further, although the social model of disability is extremely influential, it is not without critique.24 Another of the ‘social approaches’, which also had some influence during the drafting and the negotiations for the CRPD, was the ‘minority rights approach’ to disability.25 This approach views persons with disabilities as a disadvantaged and oppressed minority group that have been denied their rights, face discrimination and social exclusion, and it focuses on the relationship between the group of persons considered ‘persons 14 Jan Walmsley, ‘Research and Emancipation: Prospects and Problems’, in Peter Goward, G. Grant, P. Ramcharan, and M. Richardson (eds), Learning Disability—A Life Cycle Approach to Valuing People (Open University Press 2005); Rannveig Traustadottir, ‘Disability Studies, the Social Model and Legal Developments’, in Quinn and Arnadottir (n 3). 15 Walmsley (n 14); Traustadottir (n 14). 16 Walmsley (n 14) 724; Traustadottir (n 14); Dan Goodley, Disability Studies: An Interdisciplinary Introduction (Sage Publications 2011). 17 Kayess and French (n 3); Walmsley (n 14); Traustadottir (n 14); Marcia H Rioux, Lee A Basser, and Melinda Jones, Critical Perspectives on Human Rights and Disability Law (Martinus Nijhoff 2011); Jan Grue, Disability and Discourse Analysis (Ashgate 2015). 18 Tom Shakespeare, Disability Rights and Wrongs (Routledge 2006); Grue (n 17). 19 Kayess and French (n 3); Rioux et al (n 17). 20 Gerard Quinn, Theresia Degener et al, Human Rights and Disability: The Current Use and Future Potential of United Nations Human Rights (UN 2002); Michael Bach, ‘Supported Decision Making under Article 12 of the UN Convention on the Rights of Persons with Disabilities—Questions and Challenges’ (2007) Presentation to Conference on Legal Capacity and Supported Decision Making Parents’ Committee of Inclusion Ireland Athlone, Ireland 1, available at: ; Rioux et al (n 17); Grue (n 17). 21 22 23 Grue (n 17). Kanter (n 1). Traustadottir (n 14). 24 Traustadottir (n 14); Shakespeare (n 18); Tom Shakespeare, Disability Rights and Wrongs Revisited (2nd edn, Routledge 2014). 25 Kayess and French (n 3); Kanter (n 1). This is also found in the literature as the ‘minority group model’ or the ‘minority group approach’; Harlan Hahn, ‘Antidiscrimination Laws and Social Research on Disability: The Minority Group Perspective’ (1996) 14 Behavioral Sciences and the Law 41.
kakoullis and ikehara
38
Purpose
with disabilities’ (the minority group) and other groups.26 Although it does not make the distinction between ‘disability’ and ‘impairment’, it does place emphasis on the social environment.27 This approach considers that the discrimination, oppression, and prejudice persons with disabilities may face should be fought using civil rights legislation.28 This approach was developed in North America,29 and places emphasis on the significance of language, attitudes, and ideas,30 and for this reason employs ‘People First Language’ (PFL) which positions ‘the person before the disability’.31 The (‘strong’) ‘social model of disability’ developed in Britain, has been criticized in that by separating ‘disability’ and ‘impairment’ it places too much emphasis on social and structural barriers and ignores the experiential and cultural elements.32 For example, it ignores the importance of impairment in people’s everyday lives and the pain people may experience; and it fails to articulate or reflect the experiences, interests, and needs of persons with particular impairments, such as deafness and intellectual disabilities.33 Nevertheless, the ‘social model of disability’ was extremely influential in the Disabled People’s Movement and the Disabled Peoples Organizations (DPOs) that were involved in the drafting and negotiation process of the CRPD.34 This chapter will show how these models and approaches were important and influenced the drafting of article 1(2). Lastly, it also needs to be noted that although the drafting and negotiation for article 1 were heavily influenced by the social model of disability, it is more recently considered that the CRPD goes beyond the social model and is underpinned by the ‘human rights model of disability’.35 At the international level, reports by states parties submitted to the CRPD Committee in view of article 35, reveal that most states are having difficulty in understanding the social model of disability enshrined in article 1, as their reports reflect a medical model of disability understanding.36 At the European Union (EU) level, however, case law from the Court of Justice of the European Union (CJEU), when interpreting the concept of ‘disability’ under Directive 2000/78/EC since the EU ratified the CRPD in 2010,37 has held that the concept of ‘disability’ must be interpreted in view of the CRPD’s article 1(2).38 This in turn is in contrast with earlier case law of the CJEU,39 which predated the EU’s ratification of the CRPD, and reflected a medical model of disability.40 Thus, the 26 Hahn (n 25); Dan Goodley, Disability Studies: An Interdisciplinary Introduction (2nd edn, Sage Publications 2017). 27 Traustadottir (n 14); Shakespeare (n 18), (n 24); Hahn (n 25). 28 Traustadottir (n 14); Shakespeare (n 18). 29 Simo Vehmas, ‘Dimensions of Disability’ (2004) 13 Cambridge Quarterly of Healthcare Ethics 34. 30 ibid. 31 eg ‘person/s with a/disability/ies’; Lawson (n 11); Kathie Snow, ‘To Ensure Inclusion, Freedom, and Respect for All, It’s Time to Embrace People First Language’, 1, 2, available at: ; Paul T Jaeger and Cynthia Anna Bowman, Understanding Disability Inclusion, Access, Diversity, and Civil Rights (Praeger 2005). 32 33 Shakespeare (n 24) 11. Traustadottir (n 14). 34 Kayess and French (n 3); Theresia Degener, ‘Disability in a Human Rights Context’ (2016) 5 Laws 35. 35 Michael Ashley Stein, ‘Disability Human Rights’ (2007) 95 Cal L Rev 75; Theresia Degener, ‘A Human Rights Model of Disability’, in Peter Blanck and Eilionóir Flynn (eds), Routledge Handbook of Disability Law and Human Rights (Routledge 2017). 36 Degener (n 35). 37 European Community Council Decision 2010/48/EC of 26 November 2009 (OJ 2010 L23) 35. 38 HK Danmark v Dansk almennyttigt Boligselskab [2013] C-335/11 (11 April 2013). 39 At the time, the European Court of Justice (ECJ). 40 Sonia Chacon Navas v Eurest Colectiviades SA [2006] C-13/05 (11 July 2006).
kakoullis and ikehara
Article 1
39
‘paradigm shift’ in conceptualizing ‘disability’ embodied in the CRPD is reflected in EU anti-discrimination law.
2. Background and Travaux Préparatoires The text of what would become ‘Article 1—Purpose’ CRPD began as text in two separate draft articles when Mexico submitted a working paper of a draft convention at the Ad Hoc Committee’s first session.41 Its content was discussed during sessions two to four, sessions seven to eight, and the Working Group.42 Traditionally, drafting and negotiating UN human rights conventions take place between UN member states’ delegations only, with the negotiation process based on achieving consensus amongst states.43 However, after intense lobbying at the first session, it was decided that representatives from DPOs and human rights non-governmental organizations (NGOs), were allowed to attend future Ad Hoc Committee sessions,44 and that accredited organizations could participate in the Ad Hoc Committee’s work.45 This is significant, as it meant that the convention’s target group were able to directly contribute to the negotiation and drafting process; the process was ‘unusually transparent and cooperative’;46 and it was conciliatory in nature,
41 Ad Hoc Committee, ‘Comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities—Working Paper by Mexico’ [First Session] UN Doc A/AC265/ WP1 (2002) Art 1. 42 Ad Hoc Committee, ‘Views submitted by Governments, intergovernmental organizations and United Nations bodies concerning a comprehensive and integral international convention on the protection and promotion of the rights and dignity of persons with disabilities Note by the Secretary-General Executive Summary’ [Second Session] UN Doc A/AC265/2003/4+A/AC265/2003/4/Corr1 (16–27 June 2003); UN Enable, ‘Daily summary of discussions by article’ [Third Session] (24 May–4 June 2004) (Landmine Survivors Network, 2004), available at: ; UN Enable, ‘Daily summary of discussions by article’ [Fourth Session] (23 August–4 September 2004) (Landmine Survivors Network, 2004), available at: ; UN Enable, ‘Daily summary of discussion at the seventh session 30 January 2006’ (30 January 2006) 8(11) (Rehabilitation International), available at: ; UN Enable, ‘Daily summary of discussion at the seventh session 31 January 2006’ (31 January 2006) 8(12) (Rehabilitation International), available at: ; UN Enable, ‘Eighth Session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (14–25 August and 5 December 2006), available at: ; Ad Hoc Committee, ‘Report of the Working Group to the Ad Hoc Committee—Annex I—Draft comprehensive and integral international convention on the protection and promotion of the rights and dignity of persons with disabilities’ UN Doc A/AC265/2004/WG/1 CRP4 plus CRP4/Add 1, Add 2, Add 4, and Add 5 (2004). 43 Amita Dhanda, ‘Constructing a New Human Rights lexicon: Convention on the Rights of Persons with Disabilities’ (2008) 5 Sur—International J on Human Rights 43; Richmond Lang, ‘The United Nations on the Right and Dignities for Persons with Disability: A Panacea for Ending Disability Discrimination?’ (2009) 3 ALTER European Journal of Disability Research 266; Janet E Lord, ‘The U.N. Disability Convention: Creating Opportunities for Participation Disability and the Law’ (2010) 19 Business Law Today 23–27. Other parties, such as non-UN member states, entities, NGOs, and NHRIs, are excluded from the negotiation process, and may only attend UN General Assembly (GA) sessions where they have been granted ‘observer status’. ‘Observer status’ is granted to organizations where their activities concern issues of interest to the UNGA. 44 Lawson (n 11); Ad Hoc Committee, ‘Report of the First Session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (2002) UN Doc A/57/357 (2002). 45 Ad Hoc Committee Report (n 44). 46 Lord (n 43) 23; Lana Moriarity and Kevin Dew, ‘The United Nations Convention on the Rights of Persons with Disabilities and Participation in Aotearoa New Zealand (2011) 26 Disabil Soc 683.
kakoullis and ikehara
40
Purpose
that is, articles were agreed by consensus and, where disagreements arose, they were amicably resolved.47 This in turn had implications for the drafting of what would become the content of article 1. Some delegations were sceptical about the necessity to include an article dedicated to the convention’s ‘purpose’, whereas others supported it as a succinct version supplementing its title.48 In particular, what became its second paragraph was one of the ‘most difficult’ points debated,49 as the decision whether to include a definition of ‘disability’ or ‘persons with disabilities’ and, if so, its content, was ‘among the most controversial’,50 and one that was nearly not resolved, being negotiated up until the eighth session. Because article 1 began as text in two separate articles that were not joined until the eighth session, the negotiation and drafting process for it is divided in this chapter into two sections: first discussing the purpose (article 1, paragraph 1), and then the description of persons with disabilities (article 1(2)).
2.1 Purpose (Article 1, Paragraph 1) Article 1 in Mexico’s working paper set out ‘the object’ of the draft convention. This read: The object of this Convention is to: a) Recognize, guarantee, promote, and protect the rights of persons with disabilities; b) Eliminate all forms of discrimination against persons with disabilities in public and private spheres; c) Promote the autonomy and independent lives of persons with disabilities and achieve their full participation in economic, social, cultural, civil, and political life, under conditions of equality; d) Promote new forms of international cooperation to support national efforts in the benefit of persons with disabilities, and achieve the objectives of this Convention.51
The draft provision made reference to both the convention’s object, that is, to recognize, guarantee, promote, and protect the convention’s target group’s human rights; and to the principles of non-discrimination, autonomy, social participation, and international cooperation.52 In contrast, the Working Group’s draft separated the convention’s ‘purpose’ from its ‘principles’, and left the discussion on ‘general principles’ for article 2.53 Further, the Working Group’s article 1 was now entitled ‘Purpose’.54 It read: The purpose of this Convention shall be to ensure the full, effective and equal enjoyment of all human rights and fundamental freedoms by persons with disabilities.55
The working group also produced an alternative formulation, which read: The purpose of this Convention shall be to protect and promote the rights of persons with disabilities.56
47 Arlene S Kanter, ‘The Promise and Challenge of the United Nations Convention on the Rights of Persons with Disabilities (2007) 34 Syracuse J Int’l L & Com 287. 48 The tentative title for the convention had been ‘Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’. There was a suggestion to revise the title to the ‘International Convention on the Rights of Persons with Disabilities’ during the seventh session. Daily summary of discussions (Seventh Session] (n 42). 49 UN Press Release, ‘Disability Convention Drafting Committee Discusses International Monitoring, International Cooperation, Definition of Disability’ UN Doc SOC/4709 (15 August 2006). 50 51 52 Kayess and French (n 3) 23. Working Paper by Mexico (n 41) art 1. ibid. 53 54 55 56 Working Group (n 42). ibid. ibid. ibid.
kakoullis and ikehara
Article 1
41
There was support for both formulations,57 and the text was subsequently discussed at the third, fourth, seventh, and eighth sessions. One of the terms discussed was ‘to ensure’. Some states preferred that it be replaced with ‘to promote and to protect’,58 whereas there was also a lot of support for the term to be retained.59 Liechtenstein argued that the term ‘to ensure’ ‘is the highest level of abstraction that can be used, because “protecting” human rights is more negative and has less to do with positive obligations’,60 and Sierra Leone argued that it is a ‘key term’ ‘because it is action-oriented and requires states to do something’.61 The term was kept in the Chair’s draft at the end of the fourth session,62 disappeared from the Chair’s draft before the seventh session (as it had been replaced with ‘fulfil’),63 but reappeared in the text agreed at by the end of the seventh session,64 at the insistence of the International Disability Caucus (IDC).65 The IDC had proposed replacing ‘fulfil’ with ‘ensure’, noting, first, that governments must refrain from interfering with the human rights of persons with disabilities, second, that they must prevent third parties from interfering, but must also take proactive measures to protect persons’ rights, and third, that the language in the provision needed to reflect this.66 The IDC thus argued that ‘ensure’ would be useful to reflect this intention,67 and would make sure that the aimed outcome would be achieved.68 The terms ‘to protect and promote’ found in the Working Group’s alternative formulation received a lot of support.69 In contrast, the EU preferred the Working Group’s original formulation that used the term ‘enjoyment’, as it noted precedents in other human rights conventions, such as the International Covenant on Civil and Political Rights (ICCPR) and International Covenant on Economic, Social and Cultural Rights (CESCR).70 Further, Ireland noted a distinction between using the formulation ‘rights’ or ‘the enjoyment of rights’, suggesting that the use of the phrase ‘rights of persons with disabilities’ could be understood as a different set of rights; whereas the latter formulation would make clear that persons with disabilities do not have more or different human rights under the convention, and importantly, that the convention’s purpose is to ensure ‘the enjoyment’ of human rights by persons with disabilities.71 The Chair’s draft at the 57 At the third session, the working group’s article 1 text received support from Ireland, Jordan, the Russian Federation, and the Asia Pacific Forum of NHRIs; whereas the working group’s alternative formulation for article 1 received more support from Argentina, China, El Salvador, Eritrea, Japan, Mali, Mexico, and South Africa—Daily summary of discussions [Third Session] (n 42). 58 ibid. 59 There was also a lot of support for the draft text’s term ‘to ensure’ to be kept, by Bahrain, Liechtenstein, Norway, Serbia Montenegro, Sierra Leone, and the EDF—Daily summary of discussions [Fourth Session] (n 42). 60 61 62 ibid. ibid. ibid. 63 UNGA, ‘Letter dated 7 October 2005 from the Chairman to all members of the Committee’ A/AC265/ 2006/1 (2006). 64 ‘Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its seventh session’ UN Doc A/AC265/2006/2 (13 February 2006). 65 Marianne Schulze, ‘A Handbook on the Human Rights of Persons with Disabilities Understanding the UN Convention on the Rights of Persons with Disabilities’ (Handicap International 2010). 66 UN Enable ‘Article 1—Purpose—Seventh Session—Comments, proposals and amendments submitted electronically’, available at: . 67 68 ibid. Schulze (n 65). 69 Canada, Eritrea, Guatemala, Kenya, Mali, Morocco, Thailand, Trinidad and Tobago, supported the alternative formulation, which included the terms ‘to promote and protect’—Daily summary of discussions [Fourth Session] (n 42). 70 71 ibid. ibid.
kakoullis and ikehara
42
Purpose
end of the fourth session,72 and before the seventh session,73 as well as the text agreed at by the end of the seventh session,74 included both sets of the terms ‘to promote, protect’ but also ‘enjoyment’. Although the Working Group’s draft had separated the convention’s ‘purpose’ (article 1) from its ‘general principles’ (article 2),75 there was a lot of discussion as to the inclusion of certain principles in article 1, in particular the principle of ‘dignity’. There was very little support for the inclusion of the concept of ‘international cooperation’ during the third session,76 as it was not considered necessary to be included in article 1,77 and thus did not appear in any subsequent drafts of article 1.78 There was discussion as to whether the principle of ‘non-discrimination’ should be included.79 Although there was support,80 its inclusion was mostly deemed unnecessary,81 given that it already featured in the articles dealing with ‘general principles’ and ‘non-discrimination’.82 The result was that the principle of ‘non-discrimination’ did not appear in any subsequent drafts of article 1.83 There was some support for the inclusion of the principle of active or social ‘participation’ during the third and fourth sessions,84 and this was inserted in the Chair’s draft at the end of the fourth session;85 however, it disappeared from the Chair’s draft before the seventh session,86 and did not reappear in the text agreed at by the end of the seventh session.87 The only principle that made it into the final text of article 1 was that of ‘dignity’. There was support for the inclusion of the principle of ‘dignity’ during the third,88 fourth,89 and seventh sessions.90 People with Disability Australia (PWDA) encouraged the inclusion of the principle of ‘dignity’ explaining that the recognition of persons with disabilities’ human rights alone may not necessarily entail that they are also treated with dignity.91 The principle of dignity was inserted in the Chair’s draft at the end of the fourth session,92 disappeared from the text before the seventh session,93 but reappeared in the agreed text by the end of the seventh session in the articulation of ‘promote respect for their inherent dignity’, as its inclusion was supported by many delegations and the IDC.94 Discussion 73 ibid. Letter from the Chairman (n 63). 75 Report of the Ad Hoc Committee on its seventh session (n 64). Working Group (n 42). 76 eg, it was supported by Bahrain and Yemen in the third session—Daily summary of discussions [Third Session] (n 42). 77 Jordan and Mexico did not consider it to be necessary to be included in article 1 in the third session. ibid. 78 79 Daily summary of discussions [Fourth Session] (n 42). ibid. 80 Support was expressed by Eritrea, India, Morocco, and Sierra Leone. ‘Report of the third session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2004/5 (9 June 2004). 81 It was considered unnecessary by Canada, Mexico, New Zealand, Serbia Montenegro, and the EDF. ibid. 82 eg, it was considered unnecessary by Canada, Jamaica, Mexico, Norway, New Zealand, and Thailand in the fourth session. Daily summary of discussions [Fourth Session] (n 42). 83 ibid. 84 eg in the third session the Philippines stated that it should include ‘responsibility to take part in society’—Daily summary of discussions [Third Session] (n 57); eg in the fourth session Venezuela suggested ‘active participation’—Daily summary of discussions [Fourth Session] (n 42). 85 86 Daily summary of discussions [Fourth Session] (n 42). Letter from the Chairman (n 63). 87 Report of the Ad Hoc Committee on its seventh session (n 64). 88 Its insertion was suggested by Mexico—Daily summary of discussions [Third Session] (n 42). 89 Its insertion was suggested by Mexico, Morocco, and the PWDA—Daily summary of discussions [Fourth Session] (n 42). 90 Daily summary [Seventh Session] (30 January 2006) 8(11) (n 42). 91 92 Daily summary of discussions [Fourth Session] (n 42). ibid. 93 Letter from the Chairman (n 63). 94 Report of the Ad Hoc Committee on its seventh session (n 64); Daily summary [Seventh Session] (30 January 2006) 8(11) (n 42). 72 74
kakoullis and ikehara
Article 1
43
on the inclusion of the principle of ‘dignity’ in article 1 was intertwined with discussion on the content of the convention’s title, during the seventh session.95 Prior to the seventh session, the Chair had raised the question of whether article 1 was necessary to the convention in view of its lengthy title and the drafting practice of other conventions;96 however, states and observers expressed support in their written submissions for its retention.97 The rationale provided included that the convention’s text should be clear and accessible and that a purpose provision would assist with this.98 It was also recognized that although human rights conventions traditionally do not have a ‘purpose’ article, there are UN treaties, such as the Charter of the UN,99 which do.100 Further arguments were made that although domestic and international law differ, it is common practice to include a ‘purpose’ when drafting domestic legislation.101 Although there was support for the insertion of the principle of dignity into article 1,102 a point arose as to whether it was better placed in the title or article 1.103 The IDC’s written submission and comments by Liechtenstein during the seventh session were instrumental in resolving this. The draft title for the convention at this point was the: Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities.104
The IDC had instead suggested the following title: International Convention on the Rights of Persons with Disabilities.105 Lichtenstein supported this, explaining that the title should primarily act as a point of reference and not as a complete description.106 It went on to suggest that the principle of dignity could be included in article 1, since delegations were concerned that the more concise title eliminated important substantive elements, such as the principle of dignity.107 Furthermore, Liechtenstein emphasized the need for caution regarding how the principle was to be applied, noting that rights and dignity differ, in that states can confer the former but not the latter, which is inherent to everyone.108 Thus, it did not support the inclusion of ‘dignity’ in the title, especially in conjunction with the word ‘rights’, but supported its inclusion in article 1.109 Furthermore, it feared that the formulation ‘to promote dignity’ could imply that dignity was not already there. It is for these reasons that the phraseology agreed at the end of the seventh session, at the insistence of the IDC and Liechtenstein, was a reference to ‘respect’ for ‘dignity’.110 The text of article 1 that was agreed by the end of the seventh session read: The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by persons with disabilities, and to promote respect for their inherent dignity.111 96 ibid. Letter from the Chairman (n 63). The states and observers that favoured retention of a ‘purpose’ article were: Algeria, China, the EU, India, Kenya, the IDC, the Japan Disability Forum (JDF), and People with Disability Australia (PDA); Art 1, Seventh Session Comments (n 66). 98 99 As expressed by the IDC, ibid. Art 1 UN Charter. 100 As expressed by the Japan Disability Forum (JDF); Art 1, Seventh Session Comments (n 66). 101 ibid. 102 The states that supported the incorporation of the term ‘dignity’ (or ‘inherent dignity’) in their written submissions were: Algeria, China, and India; ibid. 103 Daily summary [Seventh Session] (30 January 2006) 8(11) (n 42). 104 Letter from the Chairman (n 63). 105 106 107 Daily summary [Seventh Session] (30 January 2006) (n 42). ibid. ibid. 108 109 110 ibid. ibid. ibid; Schulze (n 65). 111 Report of the Ad Hoc Committee on its seventh session (n 64). 95 97
kakoullis and ikehara
44
Purpose
Finally, there was one last amendment to this text during the eighth session, in which the word ‘all’ was inserted, between ‘by’ and before ‘persons with disabilities’, at the insistence of the IDC.112
2.2 Description of ‘Disability’ (Article 1, Paragraph 2) What began as article 2 in Mexico’s working paper, ultimately set out ‘definitions’ and included a definition of ‘disability’. Article 2(a) read: ‘Disability’ means a physical, mental (psychic), or sensory impairment, whether permanent or temporary, that limits the capacity to perform one or more essential activities of daily life, and which can be caused or aggravated by the economic and social environment.113
This definition was a verbatim reproduction of the same definition as contained in the Inter-American Convention on the Elimination of All Forms of Discrimination Against Persons with Disabilities (IACED) of 1999, the only difference in the formulation being the addition of ‘(psychic)’ in Mexico’s proposal.114 This definition was situated largely in a medical model of disability, as it focused on the types of impairment a person may have and that this may limit a person’s capacity to perform activities; also, it located the ‘problem’ (of ‘disability’) in the individual. However, the definition was not situated solely within a medical model, as it also recognized that limitations may be caused by the social and economic environment. The discussion concerning whether to include a definition of ‘disability’ was situated within a larger discussion about incorporating an article on ‘definitions’ in the convention.115 Some delegations were of the view that a separate article on ‘definitions’ may not be necessary, as pertinent terms may be defined in other articles.116 Other states were opposed to the convention including a definition of ‘disability’, as they were concerned about having a definition at the international level that would differ from states’ domestic legislation,117 and considered that this should be left to states to decide.118 The EU was opposed to the inclusion of a definition of both ‘disability’ or ‘persons with disabilities’, as it considered that such a definition ran the risk of becoming exclusive as opposed to inclusive.119 In contrast, other delegations, DPOs, and NGOs supported the inclusion of a definition of disability.120 For example, National Human Rights Institutions (NHRIS) explained that if a definition of ‘disability’ were not included in the convention there was a danger that states may refuse to ratify it if the convention’s meaning and obligations were uncertain; moreover, without a definition the convention would not provide guidance for domestic law and policy regarding disability awareness.121 113 Marianne Schulze (n 65). Working Paper by Mexico (n 41) Art 2(a). Inter-American Convention on the Elimination of all Forms of Discrimination against Persons with Disabilities. 115 eg Colombia and South Africa supported setting aside some time to discuss a ‘definitions’ section—Daily summary of discussions [Third Session] (n 42). 116 This view was held by Australia, Canada, the EU, New Zealand, and Norway in the Third Session (n 57); and by Bahrain, New Zealand in the Fourth Session (n 42). 117 Japan and Russia—Daily summary of discussions [Third Session] (n 42). 118 Costa Rica, India in the fourth session—Daily summary of discussions [Fourth Session] (n 42). 119 Daily summary of discussions [Fourth Session] (n 42). 120 Mexico in the first session (n 41); Yemen in the third session (n 42); Argentina, Chile, China, Holy See, Kenya, Korea, Mali, Mexico, National Human Rights Institutions (NHRIS), PWDA, Save the Children Alliance, WBU, WNSU in the fourth session (n 42); and Yemen in the seventh session (n 42). 121 Daily summary of discussions [Fourth Session] (n 42). 112 114
kakoullis and ikehara
Article 1
45
Many definitions of ‘disability’ were suggested and discussed. The majority of written submissions noted that there was no single definition of ‘disability’, and that it was frequently context-dependent.122 Japan submitted that a definition should be universally accepted but also be flexible enough to allow interpretation by individual states and accommodate different legal systems.123 There was support for the inclusion of a definition of ‘disability’ based on the UN World Health Organisation’s (WHO) 2001 International Classification of Functioning, Disability and Health (ICF),124 with Canada suggesting that the definition in the convention should reflect the WHO’s work in order to promote the standardization of international disability terminology and data collection on disability issues.125 There was also support for a medical model of disability. For example, the Russian Federation submitted a definition of ‘persons with disabilities’ that read: persons whose health is impaired by a lasting deterioration of the functions of the organism resulting from disease, injury or deficiencies, creating limitations affecting their daily living and necessitating social protection.126
The PWDA, supported a definition that encompassed all impairment groups, including health conditions such as HIV/AIDS, and recognized that impartment may be episodic, temporary, transitory, or permanent.127 There was a lot of support for the definition of ‘disability’ as set out in the IACED.128 This definition, however, was rejected by the World Network of Users and Survivors of Psychiatry (WNSUP).129 The International Labour Organization (ILO) considered that a definition of disability would be limiting, but that if the decision to include a definition were taken then ‘it should be broad, inclusive, and reflect the social dimension of disability’; it also made reference to the ILO Convention 159 and Code of Practice on Managing Disability in the Workplace.130 During the second session panel discussions were also held, with one devoted to exploring ‘new and emerging approaches to definitions of disability’ and the implications of these approaches, which had the purpose of determining the convention’s scope.131 The panellists expressed the view that discussion on contextual variables was essential and that the situation of disability should be taken into consideration. They also focused on accessibility, which they considered more important as compared to a definition of disability and drew a distinction between experiences of impairment on the one hand and experiences of disability on the other hand.132
123 Views submitted [Second Session] (n 42). ibid. This was supported by Australia, Cuba, and Korea in the fourth session. Daily summary of discussions [Fourth Session] (n 42). It was also supported by UN treaty bodies, organizations, and agencies. Views submitted [Second Session] (n 42). It was supported by the Bangkok Recommendations. Ad Hoc Committee, ‘Bangkok recommendations on the elaboration of a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities—Outcome of an expert group meeting and seminar held in Bangkok at the headquarters of the Economic and Social Commission for Asia and the Pacific from 2 to 4 June 2003’ UN Doc A/AC265/2003/CRP/10 (2003). 125 126 Views submitted [Second Session] (n 42). ibid para 25. 127 PWDA—Daily summary of discussions [Fourth Session] (n 42), set out the full definition that was suggested. 128 Argentina in the fourth session. ibid; Colombia and Costa Rica in the seventh session (n 42). 129 130 ibid. ibid. 131 Ad Hoc Committee, ‘Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ [Second Session] UN Doc A/58/118 & Corr1 (3 July 2003) para 13. 132 ibid. 122 124
kakoullis and ikehara
46
Purpose
There was also a lot of support for a definition of ‘disability’ based on the social model of disability.133 DPOs explained that many states’ definitions of ‘disability’ were grounded in a medical model and that its effect was that persons with psychosocial disabilities may be, and usually were, excluded.134 This view was reiterated by Yemen, which was concerned with the link with the medical field and that some psychiatric conditions may not be classified as ‘disability’ in some states, leading to a fear that some states would define disability ‘according to their own preferences’.135 In contrast, Australia suggested that a medical model of disability should be used because although it considered the social model important, its delegation felt that ‘disability seen purely as a function of the environment would render a definition unworkable’, because it considered persons with disabilities in need of being ‘clearly identified’.136 Views also were expressed that a definition should avoid the conceptualization of disability as solely medical, and emphasized that it should reflect social dimensions of disability.137 For example, Norway submitted that a definition should include all types of impairments, such as physical, mental, and sensory, but also the ‘handicaps’ that were imposed on persons with disabilities by society’s and the environment’s demands.138 Similarly, the Economic Commission for Latin America and the Caribbean (ECSCAP) submitted that a definition of disability should recognize multiple forms, including physical, sensory, intellectual, psychiatric, perceived, or temporary.139 In addition, it also submitted that the convention should consider social and environmental factors, and not only medical factors.140 There was also support that a definition should be harmonized with human rights principles141 and that the convention should adopt a human rights- based approach and move away from a ‘charity model of disability’.142 The discussion over the inclusion of a definition on ‘disability’ carried on into the seventh session but remained unresolved.143 Whereas some delegations and the Chair did not support the inclusion of a definition of ‘disability’ or of ‘persons with disabilities’; other delegations supported the inclusion of a definition of ‘disability’,144 ‘persons with disabilities’, or both definitions.145 The IDC was also in favour of including a definition at this point because it feared that without a definition states might narrowly interpret the range of persons protected, which would make the convention ‘virtually meaningless’.146 There was also discussion over the position of the definition in the text, with suggestions including that it could be positioned in the preamble,147 rather than in the body of the convention. 133 Yemen in the Third Session (n 42); the DPI, the EDF, National Human Rights Institutions (NHRIS), Guatemala, and Thailand in the Fourth Session (n 42); and Serbia and Montenegro and Yemen in the Seventh Session (n 42). 134 Daily summary of discussions [Fourth Session] (n 42). 135 Daily summary [Seventh Session] (31 January 2006) 8(12) (n 42). 136 Australia—Daily summary of discussions [Fourth Session] (n 42). 137 138 139 140 Views submitted [Second Session] (n 42). ibid. ibid. ibid. 141 142 143 ibid. ibid. Daily summary of discussions [Seventh Session] (n 42). 144 eg Costa Rica considered that a definition of ‘persons with disabilities’ was not necessary but that a definition on ‘disability’ ‘might have merit’ but that it would depend on the Ad Hoc Committee, as a whole, to decide, and supported the IACED definition of ‘disability’; ibid. 145 146 ibid. Lawson (n 11) 593. 147 Serbia and Montenegro in the seventh session. Daily summary of discussions [Seventh Session] (n 42).
kakoullis and ikehara
Article 1
47
Concerning content, views included a combination of both a medical model and a social model. For example, Canada reached the view that a definition was problematic, but if it were to be included it should: be based on physical or mental impairment, functional limitations, whether real or perceived, and socially constructed barriers to the full participation in society of persons with disabilities.148
Australia was concerned that a ‘strict’ social model approach may lead to the interpretation that once the barriers created by society are removed the state will have ‘no further obligation toward the person with a disability’.149 It proposed a definition that would be ‘part of the social model . . . but that works on the concept of impairment and disability, so as to recognize the triggers for the protection of the convention’.150 By the end of the seventh session, the overall consensus pointed towards the inclusion of a definition of ‘disability’ or ‘persons with disabilities’ to be included in the article on definitions.151 However, the formulation of the text had not been decided upon. Following the seventh session, the Chair circulated a draft text for discussion that read: ‘Disability’ results from the interaction between persons with impairments, conditions or illnesses and the environmental and attitudinal barriers they face. Such impairments, conditions or illnesses may be permanent, temporary, intermittent or imputed, and include those that are physical, sensory, psychosocial, neurological, medical or intellectual.152
This was considered one of the ‘most difficult issues’;153 with the provision’s formulation and positioning being one of the most time consuming during the eighth and final session,154 which was finally resolved with the assistance of the facilitator’s text.155 This text did two things: firstly, it moved the text that was previously found in the ‘definitions’ provision, into the ‘purpose’ provision (article 1); and secondly, it provided a description as opposed to a definition of ‘persons with disabilities’. It thus read: Persons with disabilities include those who have long-term physical, mental, or sensory impairments which in interaction with environmental barriers may hinder their full and effective participation in society on an equal basis with others.156
Nevertheless, the negotiations did not stop there, but rather continued with another two changes being made to the final text. The term ‘intellectual’ was introduced to the list of impairments; and the term ‘various’ was introduced before ‘barriers’, replacing ‘environmental’. The final text for article 1(2), which was adopted read: Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.157
149 ibid. ibid. 151 Daily summary of discussion at the seventh session 31 January 2006 (n 42). ibid. 152 UN Enable, ‘Possible Definition of “Disability”: Discussion Text Suggested by the Chair’ [Seventh Session], available at: . 153 154 See (n 49). Lawson (n 11). 155 UN Enable, ‘Facilitator’s text on Definition of Disability as of 23 August 2006’ [Eighth Session]. 156 157 ibid. Art 1(2) CRPD. 148 150
kakoullis and ikehara
48
Purpose
The new placement of, and the formulation of the description (and not a definition), in the convention constituted the compromise that was arrived at, as agreement could not be reached on a definition, or whether the convention should even include one.158 This marked the end of the substantive drafting as it concerned the text of article 1.159
3. Paragraph 1 3.1 ‘The purpose of the present Convention’ The CRPD is the only core UN human rights convention to have a separate article entitled ‘purpose’. Traditionally, the purpose of UN international human rights conventions has been conveyed through their title and preambular paragraphs, as is the case with the ICCPR, the CESCR, the CRC, the International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families (ICMW) and the International Convention for the Protection of All Persons from Enforced Disappearance (CED). In contrast, some international environmental law treaties contain a ‘purpose’ or ‘objectives’ provision.160 The inclusion of such a provision in the CRPD is in line with environmental law treaty drafting practice.161 During the negotiations, there was much discussion on whether there was need for a separate article on the convention’s purpose.162 The inclusion of the provision was not finalized until the seventh session, where it was decided that the convention’s title would be shortened and the ‘purpose’ article be retained.163 The need for a ‘thematic’ human rights convention, which focused on persons with disabilities had arisen from a recognition that persons with disabilities were ‘invisible’ within the core UN human rights conventions; that their particular needs were not being met as none adopted a human rights approach to ‘disability’,164 and existing human rights obligations were not tailored to address the particular barriers persons with disabilities faced in the realization of their human rights.165 The purpose provision in the CRPD ensures that all persons with disabilities fully enjoy all human rights and fundamental freedoms on an equal basis with all other persons.166
Lawson (n 11). The remaining issues that were discussed by the drafting committee concerned: (a) whether the two paragraphs in article 1 should be merged into one; (b) whether the two paragraphs should be numbered; and (c) whether a comma should be placed after the word ‘impairments’. UN Enable, ‘Drafting Group’ [Eighth Session]. 160 161 eg Art 1 of the 1992 Convention on Biological Diversity. Della Fina (n 10). 162 Daily summary [Seventh Session] (n 42); Schulze (n 65). 163 This was eventually supported by the states: Algeria, Australia, Bosnia and Herzegovina, Chile, China, Colombia, Costa Rica, Ethiopia, the EU, India, Iran, Israel, the Republic of Korea, Lichtenstein, Libya, Mauritius, Mexico, Nigeria, Norway, Serbia and Montenegro, Sudan, Syria, United States of America, and Yemen—Daily summary of discussions [Seventh Session] (n 42). 164 Janet E Lord, ‘NGO Participation in Human Rights Law and Process: Latest Developments in the Effort to Develop an International Treaty on the Rights of People with Disabilities’ (2004) 10 ILSA Journal of International & Comparative Law 311; Caroline Harnacke and Sigrid Graumann, ‘Core Principles of the UN Convention on the Rights of Persons with Disabilities: An Overview’, in Joel Anderson and Jos Philips (eds), Disability and Universal Human Rights: Legal, Ethical, and Conceptual Implications of the Convention on the Rights of Persons with Disabilities (Netherlands Institute of Human Rights 2012). Emily Julia Kakoullis, A Shift from Welfare to Rights: A Case Study of the Ratification Process for the Convention on the Rights of Persons with Disabilities in Cyprus, PhD Thesis (University of Bristol 2015); Della Fina (n 10). 165 166 Stein and Lord (n 6). Kanter (n 1). 158 159
kakoullis and ikehara
Article 1
49
3.2 ‘to promote, protect, and ensure’ The formulation ‘to promote, protect, and ensure’,167 is a combination of the Working Group’s two draft proposals for article 1: the term ‘to ensure’, was initially found in the Working Group’s draft, and the terms ‘to protect and promote’, in its alternative formulation.168 This particular formulation is unique in international human rights law.169 The three over-arching obligations on states parties to international human rights conventions effectively encompass the obligations: ‘to respect, to protect and to fulfil’.170 These are explicitly articulated in the CESCR’s General Comment No 15. The obligation ‘to respect’ requires states parties to international human rights conventions to refrain from directly or indirectly interfering with the enjoyment of a person’s human right.171 The obligation ‘to protect’ requires states parties to take measures to prevent third parties from interfering in any way with the enjoyment of a person’s human rights,172 that is, to ensure that no person is denied their human rights.173 This obligation also includes the adoption of necessary and effective legislative and policy measures.174 The obligation ‘to fulfil’ comprises three further obligations, namely: ‘to facilitate, promote and provide’.175 The obligation ‘to facilitate’ requires states parties to take positive measures to assist persons and communities to enjoy the right.176 The obligation ‘to promote’ requires states parties to take steps to support the upholding of the right,177 including to ensure that there is appropriate education around the right.178 Lastly, the obligation ‘to provide’ requires states parties to provide access to the right when persons or a group are unable to realize the right themselves by the means at their disposal, for reasons that are beyond their control.179 The wording was discussed at the Working Group and the Ad Hoc Committee’s third, fourth, and seventh sessions.180 In advance of the seventh session, the Chairman had disseminated a draft text in which article 1 included the formulation ‘to promote, protect and fulfil’.181 At the seventh session the IDC proposed that ‘fulfil’ be replaced with ‘ensure’, as it was concerned that the language of the article needed to reflect that states parties must refrain from interfering with the human rights of persons with disabilities and prevent third parties from interfering, in addition to taking proactive measures to protect the rights.182 It also argued that the terms ‘ensure’ and ‘respect’ may be useful to reflect that.183 It is noted that if the formulation ‘to respect and to ensure’ had been adopted, it would have matched the formulation used in the articles 2(1) of the ICCPR184 and CRC.185 The term ‘ensure’ was eventually included to replace ‘fulfil’ but the term ‘respect’ was not included. The result was that the text that was finally adopted read: ‘to promote, protect, and ensure’.186 Nevertheless, the text of article 1 encompasses all three over-arching obligations on states parties to international human rights conventions (‘to respect, to protect and to fulfil’), as the discussions did not aim to exempt state parties 168 169 Art 1 CRPD. Working Group (n 42). Schulze (n 65). CESCR, ‘General Comment No 15: The Right to Water (Arts 11 and 12 of the Covenant)’ UN Doc E/C12/2002/11 (20 January 2003) para 20. 171 172 173 General Comment 15 (n 170) para 21. ibid para 23. Schulze (n 65). 174 175 176 General Comment 15 para 23. ibid para 25. ibid para 25. 177 178 179 Schulze (n 65). General Comment 15 (n 170) para 25. ibid. 180 Working Group (n 42); Daily summary of discussions [Third Session] (n 42); Daily summary of discussions [Fourth Session] (n 42). 181 Letter from the Chairman (n 63). 182 183 Daily summary of discussions [Seventh Session] (n 42). ibid. 184 185 186 Art 2(1) ICCPR. Art 2(1) CRC. Art 1 CRPD. 167 170
kakoullis and ikehara
50
Purpose
from any obligations, but rather aimed to ensure ‘the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities’. It is also evident that because the CRPD iterates and tailors existing human rights to the needs of persons with disabilities, these three over-arching obligations ab initio underlie the entire foundation of the CRPD. Furthermore, the human rights nature of the CRPD reaffirms and underpins the universality, indivisibility, interdependence, and interrelatedness of all human rights and fundamental freedoms stipulated therein.187
3.3 ‘full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities’ The phrase ‘human rights and fundamental freedoms’ is central to international human rights law and is found in the UDHR, ICERD, ICCPR, CESCR, CEDAW, CRC, and CED;188 further, the phrase ‘full and equal enjoyment of human rights and fundamental freedoms’ is also found in the ICERD.189 The text of article 1(1) uses this phrase but adds to it the word ‘all’ in front of it; this achieves to ensure that persons with disabilities enjoy the human rights and fundamental freedoms set out in the existing international human rights treaties equally with all other persons.190 The core UN international human rights treaties prior to the CRPD aimed to protect and ensure the rights for all persons, including persons with disabilities; however, in practice they did not afford protection or ensure the implementation of the rights of persons with disabilities on an equal basis with non-disabled persons.191 Persons with disabilities were ‘invisible’ and their particular needs were not being met by the core UN human rights conventions.192 The intention of the CRPD’s drafters was to ensure that all human rights and fundamental freedoms provided by other international human rights treaties are enjoyed by persons with disabilities, tailored to their needs, and that the states parties’ obligations are set out in detail.193 Therefore, this phrase was intended to reaffirm that all human rights and fundamental freedoms are equally applicable under the three layers of obligations to persons with disabilities. The CRPD therefore complements the other core UN human rights treaties.194 Further, article 1(1), makes explicit that the rights and freedoms are to be enjoyed ‘by all persons with disabilities’. The addition of the word ‘all’, before ‘persons with disabilities’ was added at the insistence of the IDC; this aimed to both highlight the diversity of persons with disabilities, as well as emphasize that some persons may require additional intensive support.195
3.4 ‘to promote respect for their inherent dignity’ The principle of ‘dignity’ is the ‘anchor norm of human rights’ law;196 persons are valued because of their inherent self-worth.197 Atrocities in Nazi Germany and Japan during the Second World War (WWII), were primary factors that sensitized post-war governments CRPD, preambular para c. In the preamble and Art 26(2) UDHR; Arts 1(1), 1(4), 2(2), and 6 ICERD; Art 41(e) ICCPR; Arts 13(1) and 18 ICESCR; Arts 1 and 3 CEDAW; Arts 29(1)(b) and 40(1) CRC; and in the preamble of the International Convention for the Protection of All Persons from Enforced Disappearance (CPED). 189 Art 2(2) ICERD. 190 Della Fina (n 10). 191 Kanter (n 1). 192 193 Kayess and French (n 3); Harnacke and Graumann (n 164). Della Fina (n 10). 194 195 196 ibid. Schulze (n 65). Quinn and Degener (n 20) 14. 197 Lee Ann Basser ‘Human Dignity’ in Rioux et al (n 17). 187 188
kakoullis and ikehara
Article 1
51
to adopt the first generation of international human rights, and in turn appreciate the significance of the inviolable and fundamental value of a person as the basis of international human rights law.198 Following the end of WWII, the establishment of the UN, and the adoption of the UDHR, the principle of ‘dignity’ was recognized as a foundational human rights principle. The preamble to the Charter of the United Nations reaffirmed the international community’s commitment to human rights and human dignity (‘the peoples of the United Nations determined to reaffirm faith in fundamental human rights, in the dignity and worth of the human person’), and the preamble to the UDHR recognizes ‘the inherent dignity and . . . equal and inalienable rights of all members of the human family . . .’,199 and emphasizes, in article 1, that ‘[a]ll human beings are born free and equal in dignity and rights.’200 The principle of dignity is found in all the core international human rights treaties.201 Regional human rights treaties have also adopted the principle of dignity as a founding value.202 This is equally encountered in domestic law, via the judicial application of international human rights law or as a constitutional or legislative right.203 For example, Germany confers the principle of dignity as an objective legal norm and basic right in its constitution,204 as does South Africa as a foundational value and constitutional right.205 The principle of dignity has been crucial to achieving the ‘paradigm shift’ in conceptualizing ‘disability’, from a medical model of disability, to a social model and a human rights perspective.206 Historically, persons with disabilities were seen and treated as ‘objects’ to be pitied and protected; in contrast, focusing on the inherent dignity of persons with disabilities achieves a powerful shift in reminding society that they ‘have a stake in and claim on society that must be honoured quite apart from any considerations of social or economic utility’.207 The principle of dignity underpins the CRPD and peppers its text.208 Further, the principle is explicitly intertwined with particular rights, such as 198 A eugenic policy was not unique in Nazi Germany and Japan; Shohei Yonemoto et al, Eugenics and Human Society (Kohdanshya 2007), state that eugenic policies can also be found in the United States and in the United Kingdom before the Second World War. They argue that the social desire for superiority and efficiency, found in every society, could be an incubator of eugenics. The decision of the US Supreme Court, Bucks v Bell 247 US 200 (1927), expressed a eugenic tendency. It stated, ‘It is better for all the world if, instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes. Jacobson v Massachusetts, 197 US 11. Three generations of imbeciles are enough.’ Because of this tendency, it is extremely important to specify human dignity in human rights documents. 199 200 UDHR preamble. UDHR Art 1. 201 In the preambles of all the core UN human rights treaties, and in Arts 10(1) ICCRP, 13(1) CESCR, and 37(c) CRC. In the preambles to the ICERD, CEDAW, CAT, and CRC, as well as in Arts 23(1), 28(2) CRC; Lastly in Art 19(2) CED. 202 For information on regional treaties, see Aharon Barak, Human Dignity: The Constitutional Value and the Constitutional Rights (CUP 2015) 107, where it is stated that: ‘human dignity is seen as a founding value that expresses the basic concept and rationale underlying the basic rights. It is understood as a value that indicates that human rights are not granted by the state, and thus the state cannot take them away. Indeed, human dignity stands at the foundations of democracy itself.’ 203 Basser (n 196). 204 Art 1 of the Basic law of the Federal Republic of Germany of 1949 states that: ‘Human dignity shall be inviolable. To respect and protect it shall be the duty of all state authority.’ English translated version of the article available at: . 205 206 207 Basser (n 196). Quinn and Degener (n 20). ibid 14. 208 The term ‘inherent dignity’ is found in Art 1, the preamble (paragraphs a and h), and in the provision on ‘general principles’ (Art 3(a)). Further, the term ‘dignity’ is also found in the preamble (paragraph y) and the provision on awareness-raising (Art 8(1)).
kakoullis and ikehara
52
Purpose
freedom from exploitation, violence, and abuse (article 16(4)), the right to education (article 24(1)(a)), and the right to health (article 25(d)). The inclusion of the principle of dignity was first suggested by Mexico in its working paper for a convention.209 Similar to the final text of the CRPD, the principle underpinned and peppered the working paper for the convention.210 However, the principle of dignity was not present in the working group’s text for article 1 or the alternative formulation, and Mexico was keen to ensure that the principle would be included in article 1. It thus provided suggestions for amendment to the alternative formulation during the third session, adding ‘and dignity of [persons with disabilities] . . .’.211 This had the support of Colombia, as it was considered to create a single vision.212 Mexico persisted in the fourth session with its suggestion that the principle of ‘dignity’ be included in article 1; this was also supported by Morocco and the PWDA, which argued that the recognition of persons with disabilities’ human rights alone would not necessarily ensure that they are treated with dignity.213 The principle was included in the Chair’s draft at the end of the fourth session which read: ‘The purpose . . . all human rights and fundamental freedoms of [persons with disabilities], their dignity . . .’;214 nevertheless, it was not present in the Chair’s draft before the seventh session.215 During the seventh session, the discussion regarding article 1, the Convention’s title, and the position of the principle of dignity, were eventually resolved by the decision that article 1 would be retained but that the title would be shortened and the principle of dignity be included in article 1, and not in the title.216 As discussed in section 2, key to this resolution were Liechtenstein’s and the IDC’s actions. There was further support for shortening the convention’s title and including the principle of dignity in article 1 from Bosnia and Herzegovina, India, Iran, Jordan, Libya, and Mauritius.217 Although Mexico agreed to a shorter title, it still supported the inclusion of the principle of dignity in the title; this was also supported by Korea and Senegal.218 Moreover, Bosnia and Herzegovina and the IDC suggested that the phrase ‘respect for dignity’ be used in order to avoid implying that dignity may somehow not be inherent; or that it requires promotion, respectively.219 Furthermore, the Chair suggested that the term ‘inherent’ be added and the phrase ‘respect for inherent dignity’ be used so as to resolve concerns around the nature of the principle of dignity and to be consistent with the phrasing used in other human rights treaties.220 Aharon Barak discusses four common connotations of the concept of dignity.221 Firstly, protection and ensuring bodily integrity; including the prohibition of torture, severe punishment, systematic rape, and degradation. Secondly, ensuring basic equality between persons. Thirdly, the protection of the personal identity of the individual, psychological integrity, and intellectual fulfilment. Lastly, ensuring the minimal subsistence of the individual in society. It is argued that the CRPD includes these four connotations in various clauses. For example, article 17 protects the integrity of the person.222 Article 15, in turn, 210 Working Paper by Mexico (n 41). ibid. 212 Daily summary of discussions [Third Session] (n 57). ibid. 213 214 Daily summary of discussions [Fourth Session] (n 42). ibid. 215 216 Letter from the Chairman (n 63). Daily summary [Seventh Session] (n 42). 217 ibid. 218 ibid. 219 ibid. 220 Della Fina (n 10). 221 Barak (n 209) 237. 222 The IDC stated that: ‘Forced interventions have long been recognized by people with disabilities ourselves as a serious violation of our mental and bodily integrity, comparable to rape and other forms of torture. The definition in the Convention Against Torture includes discrimination as a purpose of torture, which is clearly relevant in the disability context. Measures intended to obliterate the personality or to diminish the physical or mental capacities of the victim are also regarded as torture, in the Inter-American Convention to Prevent and Punish Torture and by leading commentators. Many forced interventions used against people 209 211
kakoullis and ikehara
Article 1
53
provides for freedom from torture, cruel, inhuman, or degrading treatment and punishment. Secondly, preambular paragraph (h) stipulates that ‘discrimination against any person on the basis of disability is a violation of the inherent dignity and worth of the human person’.223 Thirdly, in addition to article 17, article 3 CRPD envisages ‘[r]espect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons’ and ‘[r]espect for [the] difference and acceptance of persons with disabilities as [a] part of human diversity and humanity’. Fourthly, article 28 protects the right to an adequate standard of living, including adequate food, clothing, and housing; the continuous improvement of living conditions; and social protection.224 These clauses are particularly associated with the principle of dignity. Further, Christopher McCrudden suggests that a basic minimum content of ‘human dignity’ consists of, firstly, that every person ‘possesses an intrinsic worth’ by virtue of being human; secondly, that the intrinsic worth should be both recognized and respected, and that some types of behaviour are ‘inconsistent with respect for this intrinsic worth’; and lastly, that the state exists for the sake of the person, not the other way round.225 Although the principle of dignity is extremely important in human rights law, it has also been criticized for being vague regarding the variations in its judicial interpretation,226 and there is concern over how the principle has been interpreted regarding persons with disabilities by the ECtHR and UK domestic courts because ‘[t]here are precious few case reports concerning disabled people that provide a benchmark of judges actually facing a concrete situation and identifying it as [“]indignity[”].’227
4. Paragraph 2 This paragraph is slightly unusual in terms of UN human rights treaties, as other such treaties, with the exception of the CRC,228 do not contain a provision that includes a description of the convention’s target group as an identifiable group in one of its provisions. As mentioned, the CRPD does not contain a definition of ‘disability’ and/or ‘persons with disabilities’. Instead, preambular paragraph (e) asserts that ‘disability is an evolving concept’, and article 2, which provides definitions of the CRPD’s key terms, also does not with disabilities would fall into this category, since they are intended to diminish capacities of the individual which are seen as undesirable, or compel people with disabilities to give up their identity as disabled people and mimic non-disabled reality.’ UN Enable, ‘Article 11: Freedom from Torture or Cruel, Inhuman or degrading Treatment or Punishment— Draft Proposal’, available at: . CRPD preambular para h. The interrelation between dignity and an adequate standard of living might be less emphasized than that between dignity and civil and political rights. However, the Constitutional Court of the Republic of South Africa articulated: ‘Our Constitution entrenches both civil and political rights and social and economic rights. All the rights in our Bill of Rights are inter-related and mutually supporting. There can be no doubt that human dignity, freedom and equality, the foundational values of our society, are denied those who have no food, clothing or shelter.’ (para 23). ‘A society must seek to ensure that the basic necessities of life are provided to all if it is to be a society based on human dignity, freedom and equality.’ (para 44)—Government of the Republic of South Africa and Others v Grootboom 2001 (1) SA 46 (CC). 225 Christopher McCrudden, ‘Human Dignity and Judicial Interpretation of Human Rights’ (2008) 19 EJIL 655, 723. 226 ibid. 227 Luke Clements, ‘Disability, Dignity and the Cri de Coeur’ (2011) 6 EHRLR 675, 675. 228 Art 1 CRC reads: ‘For the purposes of the present Convention, a child means every human being below the age of eighteen years unless under the law applicable to the child, majority is attained earlier.’ 223 224
kakoullis and ikehara
54
Purpose
provide a definition of ‘persons with disabilities’. Instead, a description of the CRPD’s target group, ‘persons with disabilities’ is included in article 1(2), as part of the CRPD’s purpose. This paragraph is instrumental to the CRPD. Key to understanding the CRPD, it is important to understand the conceptualization of ‘disability’ that it employs.229 The CRPD’s drafting and negotiation process was a unique, participatory, and collaborative process, within which persons with disabilities’ voices were heard and listened to, forming a central part of the process. During the negotiations and drafting for the CRPD, the social model of disability was a motto of the International Disability Movement and was used as a powerful tool that enabled DPOs to demand legal reform at the international level.230 Through the participatory process, a particular conceptualization of disability was enabled to shape the text. Article 1(2) (and preambular paragraph e) rejects a conceptualization of ‘disability’ grounded exclusively in a medical model of disability; rather, it shifts focus away from impairment and the individual, towards attitudinal, environmental, and societal barriers such as infrastructure, social, legal, and economic, processes and structures. The conceptualization is underpinned by the social model of disability because it explicitly makes reference to the interaction between persons with impairments on the one hand, and societal barriers on the other;231 with the CRPD being ‘the highest legal manifestation and confirmation of the social model of disability on the international stage’.232 The CRPD thus reflects a ‘paradigm shift’ in conceptualizing ‘disability’.233 It is important to understand, however, that the significant influence the social model of disability had over the drafting and negotiation process came from a ‘populist conceptualization of the social model as a disability rights manifesto and its tendency towards a radical social constructionist view of disability, rather than from its contemporary expression as a critical theory of disability’.234 In view of the fact that treaty negotiation is a highly politically charged process, ‘reductionism in the use of the social model is comprehensible’.235 Lastly, to consider the conceptualization of ‘disability’ in article 1(2), as underpinned exclusively and solely by the social model of disability, would be to ignore the language it employs.
4.1 ‘Persons with disabilities’ Article 1(2), the CRPD’s title and text, use the phrase ‘persons with disabilities’.236 Viewed through a social model of disability ‘lens’, the use of the phrase ‘persons with disabilities’ appears at odds, because situated through such a ‘lens’ the term ‘disabled people’ better Harnacke and Graumann (n 164). Degener ‘A New Human Rights Model of Disability’ in Della Fina et al (n 10). 231 Waddington (n 13); Janet E Lord and Michael Ashley Stein, ‘The Domestic Incorporation of Human Rights Law and the United Nations Convention on the Rights of Persons with Disabilities (2008) 83 Washington Law Review 449; Raymond Lang, Maria Kett, Nora Groce, and Jean-Francois Trani, ‘Implementing the United Nations Convention on the Rights of Persons with Disabilities: Principles, Implications, Practice and Limitations’ (2011) 5 ALTER European Journal of Disability Research 206; Kelley Johnson, ‘The UN Convention on the Rights of Persons with Disabilities’ (2013) 7 Ethics and Social Welfare 218–31; UN OHCHR, ‘The Convention on the Rights of Persons with Disabilities Training Guide Professional Training Series No. 19’ (2014). 232 Waddington (n 13). 233 Moriarity and Dew (n 46); Gauthier de Beco, ‘Case Note: Is Obesity a Disability? The Definition of Disability by the Court of Justice of the European Union and its Consequences for the Application of EU Anti-Discrimination Law’ 22 (2016) Colum J Eur L 381. 234 235 Kayess and French (n 3) 7. Degener (n 230) 56. 236 eg the title reads: ‘Convention on the Rights of Persons with Disabilities’. 229 230
kakoullis and ikehara
Article 1
55
reflects the social model as it is societal and environmental factors that disable persons with impairments. Although article 1 is underpinned by the social model of disability its formulation reveals that it also employs PFL, which is the dominant language terminology in the international disability rights field.237 Further, the term ‘disability’ and not ‘impairments’ (or ‘conditions’) was used, which would better reflect the social model of disability, as it is societal and environmental barriers that disable persons with impairments. An examination of the language of article 1 (and the CRPD text) reveals that it is also underpinned by the minority group approach to disability, that is, it involves the identification of persons that (self )identify as ‘persons with disabilities’ in order to be entitled to human rights protection under the CRPD. Lastly, another issue concerns linguistic/translation, translating the distinction between the term ‘disability’ and ‘impairments’ into different languages. Translation to other states parties’ languages is required as the CRPD is available in the UN’s six official languages.238 Article 1(2) distinguishes between the term ‘impairment’ and the term ‘disability’.239 This may pose a challenge for states parties that do not have a corresponding term in their language to the English language term ‘impairment’.240
4.2 ‘include those who have long-term physical, mental, intellectual or sensory impairments’ An exclusive conceptualization of a social model of disability based on the text of article 1, may have read ‘include those who have impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others’, and not included a list of impairments or temporal limitation. Article 1(2), however, also includes a list of impairment types, these are: ‘physical, mental, intellectual, or sensory’.241 There was a lot of discussion concerning the list of impairment types; this had two aspects, one aspect concerned the language/terminology employed, and the second the potential distributive impact of including a definition. Following the seventh session the Chair had circulated a draft text for discussion and the negotiations on this provision were only eventually resolved at the eighth and final session with the aid of a facilitator’s text. Both the Chair and facilitator’s texts included the term ‘impairment’, which the IDC was extremely concerned about because it ‘reject[ed] the use of the term “impairment” to refer to intellectual or psychosocial disability’,242 and preferred that the 238 Shakespeare (n 24). These are: Arabic, Chinese, English, French, Russian, and Spanish. This situates the conceptualization of disability within the social model of disability. 240 eg in Cyprus, in contrast to the UN English language version, the official Cypriot Greek language CRPD translation employs the term ‘disabilities’ (in Greek: ‘αναπηρίες’); with no distinction being made between the terms ‘disability’ and ‘impairment’. The outcome is the confusing Greek translated formulation of article 1: ‘disability arises from the interaction between persons with disabilities and . . . barriers . . .’. The implication is that the linguistic difference, in which the English term ‘impairment’ does not have a corresponding term in Greek, renders interpreting the Greek translated CRPD text of article 1 difficult within the context of the social model of disability; Kakoullis (n 164) 224. Further, in the Nordic states, the distinction between the term ‘impairment’ and ‘disability’ is difficult to translate, because ‘there are not separate words which can capture the sense of individual bodily experience and social-contextual experience’; Shakespeare (n 18) 25. 241 Art 1(2) CRPD. 242 International Disability Caucus (IDC), ‘International Disability Caucus News page for 23 August [2006]’, available at: . 237 239
kakoullis and ikehara
56
Purpose
term ‘condition’ be used instead, which would have been ‘more inclusive and less stigmatizing’.243 The IDC had thus proposed: ‘physical, sensory, psychosocial, intellectual, neurological and medical impairments and conditions’.244 Eventually, however, the term ‘impairment’ was maintained in the final draft but not ‘conditions’. Regarding the contents of the list, the Chair’s draft, circulated after the seventh session, mirrored almost verbatim the IDC’s proposal, as it stated: ‘physical, sensory, psychosocial, neurological, medical or intellectual’.245 It was an open and non-exhaustive list.246 The facilitator’s draft, however, removed the terms ‘psychosocial’, ‘neurological’ and ‘intellectual’, and replaced these with the term ‘mental’.247 The IDC would have preferred that a formulation included terms such as ‘psychosocial’ and ‘neurological’,248 because that is the language/terminology preferred by the leading organizations of the persons concerned, which the IDC was representing.249 Furthermore, the IDC explained that the term ‘mental’ was no longer used because it ‘confuses very distinct forms of disabilities and does not explicitly cover psycho-social disabilities’.250 During the eighth and final session the term ‘intellectual’ was re-inserted back into the provision; however, the term ‘mental’ impairment remained, referring to the ‘psychosocial dimension’.251 Although article 1(2) includes a list of impairment types, it is not exclusive as it is premised on the words ‘include those’ persons.252 One of the concerns that some delegations with large populations, such as China, India, and Russia, expressed during the negotiations, regarded the potential distributive impact of including a definition of ‘disability’ or ‘persons with disabilities’.253 Some delegations wanted a narrow scope of ‘disabilities’ as they were worried that otherwise it would ‘open the floodgates’, with the implication of obligating states parties to recognize and afford protection to a large number of persons from impairment groups, such as persons with HIV/AIDS or psychosocial conditions, which traditionally were not viewed as ‘persons with disabilities’ within the objecting states’ societies and cultures.254 In contrast, DPOs, NGOs, and other delegations, wanted to make sure that the convention would apply to all persons with disabilities, that is, persons from all impairment or condition groups.255 The final text eventually adopted did not contain an exclusive list of impairment types. Paragraph 2 does, however, include a temporal limitation, as it reads: ‘. . . those who have long-term . . . impairments’.256 Formulations that were suggested during the negotiations included: Australia’s draft: ‘. . . (h) may presently exist; or (i) may have previously existed but no longer exists; or (j) may exist in the future; or (k) may be imputed to a person’;257 the Chair’s draft: ‘may be permanent, temporary, intermittent or imputed’;258 and the IDC’s draft: ‘imputed, perceived, temporary and intermittent’.259 None of these 244 245 Lawson (n 11) 594. Schulze (n 65) 38. UN Enable (n 152). 247 Schulze (n 65) 38. UN Enable (n 155). 248 UN Enable, ‘Article 2—Definitions—Seventh Session—Comments, proposals and amendments submitted electronically’, available at: . 249 250 Anna Lawson (n 11) 594. Schulze (n 65) 38. 251 Tina Minkowitz, ‘The United Nations Convention on the Rights of Persons with Disabilities and the Right to be Free from Nonconsensual Psychiatric Interventions’ 34 (2007) Syracuse J Intl L & Com 405, 407. 252 253 254 Art 1(2) CRPD. Kayess and French (n 3) 23. ibid. 255 256 Schulze (n 65) 36. Art 1(2) CRPD. 257 UN Enable, ‘Seventh Session—Proposed modifications by Governments -Proposed changes to draft articles made by Australia’ [Seventh Session], available at: . 258 259 UN Enable (n 152). Schulze (n 65) 38. 243 246
kakoullis and ikehara
Article 1
57
formulations included the term ‘long-term’. The term ‘long-term’ was present in the UK’s Disability Discrimination Act (DDA 1995) and at the time the CRPD was being negotiated, the DDA was being challenged ‘as arbitrary and unnecessarily restrictive’ and was under review.260 However, the term was included in the facilitator’s text at the eighth session.261 Although the IDC opposed the term’s insertion, it was unsuccessful.262
4.3 ‘which in interaction with various barriers’ As already discussed, the central thrust of the social model is that attitudinal, environmental and structural barriers disable persons who have impairments. Therefore, the formulation ‘. . . impairments which in interaction with various barriers . . .’ in article 1, paragraph 2,263 crystallizes and ensures the ‘legal anchoring’ of the ‘paradigm shift’ to the social model of disability in the CRPD.264 It is noted, however, that in paragraph 2, the formulation merely makes reference to ‘various barriers’ and does not describe any of these. This is because, although during the negotiations suggestions were made to describe the ‘barriers’ as ‘environmental and attitudinal’ or ‘social’, consensus could not be achieved and so only the term ‘various’ was used.265 Nevertheless, concerning the interpretation of ‘barriers’ in article 1, guidance is provided in preambular paragraph e, which states: ‘. . . the interaction between persons with impairments and attitudinal and environmental barriers . . .’. This wording also reflects the Chair’s draft text that was circulated after the seventh session which read: ‘environmental and attitudinal barriers’.266 It is clear that ‘barriers’ in article 1, concern both attitudinal and environmental societal barriers.
4.4 ‘may hinder their full and effective participation in society’ There was initially some support for the inclusion of the principle of active or social ‘participation’ during the third and fourth sessions;267 however, despite the fact that the IDC’s suggestion submitted in advance of the seventh session included reference to, ‘ability to lead an inclusive life in the community of his/her own choice is limited by . . .’,268 the Chair’s draft text did not include a reference to participation in society.269 A background document that was used during the eighth session was that of ‘Definition[s]of disability in selected national legislation’, which drew on various states’ domestic definitions of ‘disability’, ‘disabled persons’, and ‘persons with disabilities’.270 Some of the definitions (found in French, Mauritian, Peruvian, and Zimbabwean law), made reference to participation in society.271 Further, the EU suggested that the term ‘may’ be inserted, in order ‘to avoid a too close linkage between the impairment and the barrier(s)’.272 The facilitator’s text made reference to participation in society, and read: ‘may hinder their full
261 262 Lawson (n 11) 594. UN Enable (n 155). Schulze (n 65) 38. 264 265 266 Art 1(2) CRPD. Schulze (n 65) 39. ibid. UN Enable (n 152). 267 eg in the third session the Philippines stated that it should include ‘responsibility to take part in society’—Daily summary of discussions [Third Session] (n 57); eg in the fourth session Venezuela suggested ‘active participation’—Daily summary of discussions [Fourth Session] (n 42). 268 UN Enable, Seventh Session—NGO Comments on the draft text—Chairman’s text amended by the IDC, available at: . 269 UN Enable (n 152). 270 UN Enable, Documents of the Eighth Session—Definition[s]of disability in selected national legislation, available at: . 271 272 ibid. Schulze (n 65) 39. 260 263
kakoullis and ikehara
58
Purpose
and effective participation in society’.273 This is also the formulation found in the final version, which was adopted.
4.5 ‘on an equal basis with others’ The formulation ‘on an equal basis with others’ is not found in other UN human rights treaties. During the drafting and negotiations for the CRPD, a plethora of at least fifty domestic law definitions of disability were examined, including Serbian legislation which included the phrase ‘. . . on an equal basis with others . . .’.274 In addition to the phrase’s position in article 1, paragraph 2, it is also found in many other CRPD provisions.275 This phrase seeks to ensure that persons with disabilities have their human rights respected, protected, fulfilled, monitored, and evaluated on an equal basis with others, but it also serves as a caveat to make sure that persons with disabilities are not provided with ‘more’ human rights protection than other persons in some states parties, for example where some states continue to impose the death penalty.276 Although the CRPD was heavily shaped and influenced by the social model of disability, it is more recently considered that the CRPD goes beyond the social model, and that through the CRPD a ‘human rights model of disability’ has been developed.277 It has been argued that the human rights model of disability and the social model of disability differ in six ways:278 Firstly, where the social model of disability explains ‘disability’ (or ‘disablement’), the human rights model of disability includes principles and values that acknowledge the human dignity of persons with disabilities. Secondly, the human rights model of disability goes beyond anti-discrimination rights and encompasses civil and political, and economic, social, and cultural rights. Thirdly, the human rights model of disability acknowledges experiential elements, such as the importance of impairment in people’s everyday lives and the pain some people may experience, and demands that these are considered. Fourthly, the human rights model of disability allows space for identity politics, such as minority and cultural (self )identification. Fifthly, it recognizes the need for health prevention services in the context of the human right to health. Lastly, the human rights model of disability seeks to achieve social justice.279 Importantly, the human rights model of disability (or ‘disability human rights paradigm’) recognizes the intrinsic value of every person for their own end, ‘rather than focusing on a lack of overall capabilities as measured against a functional baseline’.280 Eleven years following the CRPD’s adoption in 2006, most states parties continue to face challenges in interpreting and implementing the human rights model of disability conceptualization enshrined in article 1(2). This is revealed by the examination of states parties’ reports submitted to the CRPD Committee on the Rights of Persons with Disabilities (Committee) in view of article 35281 and the CRPD Committee’s concluding observations. In the examination of the CRPD Committee’s concluding observations from 2011 to 2017, four recurring challenges were identified that states parties to the CRPD are facing globally: ‘Definitions’ (or the ‘concept’) of ‘disability’ or ‘persons with disabilities’, situated in laws, regulations, or policies that are based on the medical model 274 UN Enable (n 155). Schulze (n 65) 35. These are the preambular para e, and Arts 2, 9, 10, 12, 13, 14, 15, 17, 18, 19, 21, 22, 23, 24, 27, 29, and 30. 276 277 278 279 Schulze (n 65). Degener (n 230) 56. ibid. ibid. 280 281 Stein (n 35) 107. Degener (n 35). 273 275
kakoullis and ikehara
Article 1
59
of disability and not on the human rights model of disability. For example, in the case of Cyprus, the Persons with Disabilities Law of 2000,282 defines ‘disability’ as: any form of inadequacy or disadvantage which causes permanent or of an unspecified duration physical, intellectual or mental restriction to persons who taking into consideration their [medical] history and other personal data of the person in question substantively limits or excludes the possibility of carrying out one or more activities or functions that are considered normal and substantive for the quality of life of every person of the same age who does not have such an inadequacy or disadvantage.283
This definition reflects a medical model of disability, as it focuses on, and reduces ‘disability’ to, the impairment a person may have. The CRPD Committee noted with concern that Cyprus’s domestic legislation has not incorporated a human rights-based approach to disability in line with article 1; it also urged Cyprus to adopt and implement a human rights model of disability and to review all legislation and policies in collaboration with Cypriot DPOs.284 Similarly, in the case of Italy, the Committee found that ‘disability’ ‘continues to be defined through a medical perspective’, and recommended that Italy adopts a concept of disability that is in line with article 1.285 Legislation (legislative framework), regulations, policies, measures or programmes, are in need of amendment, in order to embody and reflect the human rights model of disability. For example, the Committee expressed concern that Belgium’s regulations primarily reflect a medical model of disability.286 It also noted with concern that domestic legislation on persons with disabilities adopted before the CRPD was ratified by Morocco, Qatar, and UAE, has not been harmonized with the CRPD and does not reflect the human rights model of disability.287 ‘Disability determination’ or ‘disability assessment criteria’ are used by states parties, which are based on the medical model of disability and not on the human rights model. For example, in the case of Bolivia, the Committee noted with concern that the criteria used to certify ‘disability’ continue to reflect the medical model of disability, and that they do not take into account the barriers persons with disabilities face or the human rights model of disability.288 Further, in the case of Colombia, the Committee noted with concern that the single register for locating and classifying persons with disabilities, employs criteria that are based on the medical model of disability for the purposes of calculating pension and social assistance benefits.289 The Committee recommended that 282 CRPD Committee, ‘Concluding Observations on the Initial Report of Cyprus’ UN Doc CRPD/C/ CYP/1 (27 February 2015) para 20. The Persons with Disabilities Law of 2000 (L 127(I)/2000) with amendments 57(I)/2004; 72(I)/2007; 102(I)/2007; 63(Ι)/2014; 22(Ι)/2015, available at: . 283 The Persons with Disabilities Law of 2000 (n 282) Art 2 (author’s translation). 284 Cyprus Concluding Observations (n 282) paras 5, 6. 285 CRPD Committee, Concluding Observations on the Initial Report of Italy’ UN Doc CRPD/C/ITA/ CO/1 (6 October 2016), paras 5, 6. 286 CRPD Committee, ‘Concluding Observations on the Initial Report of Belgium’ UN Doc CRPD/C/ BEL/CO/1 (28 October 2014) para 7. 287 CRPD Committee, ‘Concluding Observations on the Initial Report of Morocco’ UN Doc CRPD/C/ MAR/CO/1 (25 September 2017) paras 6, 7; CRPD Committee, ‘Concluding Observations on the Initial Report of Qatar’ UN Doc CRPD/C/QAT/CO/1 (2 October 2015) paras 7, 8; CRPD Committee, ‘Concluding Observations on the Initial Report of the UAE’ UN Doc CRPD/C/ARE/CO/1 (3 October 2016) paras 7, 8. 288 CRPD Committee, ‘Concluding Observations on the Initial Report of the Plurinational State of Bolivia’ UN Doc CRPD/C/BOL/CO/1 (4 November 2016) para 7. 289 CRPD Committee, ‘Concluding Observations on the Initial Report of Colombia’ UN Doc CRPD/C/ COL/CO/1 (30 September 2016) para 12.
kakoullis and ikehara
60
Purpose
they review and amend their criteria for certifying (Bolivia) and classifying (Colombia) ‘disability’, so that the criteria reflect the human rights model of disability. Lastly, ‘derogatory terminology’ against persons with disabilities is present in legislation and/or policies, which needs to be removed. For example, in the case of Iran, the Committee noted with concern that domestic Iranian legislation contains derogatory terms such as ‘mentally ill’, ‘insane’, and ‘retarded’.290 Also, in the case of Lithuania, it noted again with concern, that in domestic legislation and data collection, where reference is made to persons with disabilities, derogatory language, such as ‘deaf-mute’ and ‘disorder’, is used.291 In both these situations, the Committee recommended that the states in question eliminate the use of all derogatory language when referring to persons with disabilities. It is also notable in view of that it is in the UK where the (‘strong’) social model of disability was originally developed,292 that in 2017 the Committee found a lack of consistency across the UK in the understanding and application of the human rights model of disability.293 Overall, the challenges experienced by states parties, demonstrate that the ‘paradigm shift’ in conceptualizing ‘disability’ embodied in the CRPD is not reflected in the majority of states parties to the CRPD.294 Further, the CRPD places an obligation on states parties to collect appropriate statistical and research data so to enable them to formulate and implement policies to give effect to the CRPD’s provisions and to assess the implementation of their obligations.295 Prior to ratifying the CRPD some states parties may not have had adequate data collection and analysis methods in place regarding ‘disability’ to enable them to assess the extent to which all persons with disabilities are exercising all of their rights under the CRPD296 and subsequently sought to introduce such data collection systems.297 During the negotiations for the CRPD, the WHO’s ICF (2001) had been suggested. Following the adoption of the CRPD, suggestions have been made that the conceptualization of ‘disability’ in the CRPD ‘is in line with the ICF’,298 and calls have been made for the ICF to be used for data collection and to monitor the implementation of the CRPD.299 These 290 CRPD Committee, ‘Concluding Observations on the Initial Report of Iran’ UN Doc CRPD/C/IRN/ CO/1 (10 May 2017) para 8(c). 291 CRPD Committee, ‘Concluding Observations on the Initial Report of Lithuania’ UN Doc CRPD/C/ LTU/CO/1 (11 May 2016) para 7. 292 Shakespeare (n 24) 11. 293 CRPD Committee, ‘Concluding Observations on the Initial Report of the United Kingdom’ UN Doc CRPD/C/GBR/CO/1 (3 October 2017) para 6. 294 295 Degener (n 35). Art 31 CRPD. 296 CRPD Committee, ‘Concluding Observations on the Initial Report of Armenia’ UN Doc para 55; Cyprus (n 295) para 61; CRPD Committee, ‘Concluding Observations on the Initial Report of Thailand’ UN Doc CRPD/C/THA/CO/1 (12 May 2016) para 63; CRPD Committee, ‘Concluding Observations on the Initial Report of Serbia’ UN Doc CRPD/C/SRB/CO/1 (21 April 2016) para 63; European Union Agency for Fundamental Rights (FRA), ‘From Institutions to Community Living Part III: Outcomes for Persons with Disabilities’ (FRA 2017). 297 eg Cyprus; Michalis Demosthenous, A Critique on the Classification System of Disability and Functionality [author’s translation] (Parga Publishers 2013). 298 Della Fina (n 10) 97; Jerome E. Bickenbach, ‘Disability, Culture and the UN Convention’ (2009) 31 Disabil Rehabil 1111; Katerina Kazou ‘Analysing the Definition of Disability in the UN Convention on the Rights of Persons with Disabilities: It Is Really Based on a ‘Social Model’ Approach?’ (2017) 23 IJMHCL 25. 299 Jerome E Bickenbach, ‘Monitoring the United Nation’s Convention on the Rights of Persons with Disabilities: Data and the International Classification of Functioning, Disability and Health’ (2011) 11 BMC Public Health 1. The UN Development Group (UNDG) Guidance Note for UN Country Teams (UNCTs) and implementing partners on including the rights of persons with disabilities in view of the CRPD in UN programming at country level ‘proposes th[e][WHO ICF] definition as a possible reference’; United Nations Development Group (UNDG), ‘Including the Rights of Persons with Disabilities in [UN] Programming at
kakoullis and ikehara
Article 1
61
suggestions and calls need to be treated with utmost caution, as the ICF ‘explicitly relies on a medicalised understanding of disability’,300 which does not accord with article 1(2), of the CRPD. Further, it is significant to note that although the ICF is used as an analytical, statistical, and planning tool’,301 the drafting process and the text of the CRPD sought to explicitly ‘break away’ from the ICF being potentially used to implement the CRPD. This is illustrated in preambular paragraph f, of the CRPD.302 The ‘paradigm shift’ embodied in article 1(2) of the CRPD is also about the instruments and programmes at the UN human rights law level. Preambular paragraph f, explicitly demarcates the continuity and discontinuity of the CRPD with previous UN documents and activity,303 as it explicitly links the CRPD to the World Action Programme concerning Disabled Persons (1982) and the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993).304 Concurrently, it seeks to explicitly ‘break away’ from the Declaration on the Rights of Mentally Retarded Persons (1971), the Declaration on the Rights of Disabled Persons (1975), the Principles for the Protection of Persons with Mental Illness, and the ICF (2001); by excluding reference to these in the CRPD’s preamble.305 This ‘break’ was deliberate. The ICF (2001) is ‘seen as inadequate’ by many within the International Disability Rights Movement,306 and during the drafting and negotiations for the CRPD the IDC ‘vehemently opposed’ reference to it on the basis that it reflected a medical model of disability and that it was part of the ‘old paradigm’ human rights problem persons with disabilities experienced that the CRPD sought to overcome with article 1.307 The exclusion of the ICF from any reference in the CRPD suggests that it is not compatible with the CRPD. Furthermore, the Committee has expressed concern regarding how the ICF is implemented and its compatibility with the CRPD in its concluding observations on Mongolia.308 Another state party that has recently implemented the ICF (2001), and established an ‘assessment centre’, including the special training of doctors and other health professionals, is Cyprus.309 The decision to introduce the ICF in Cyprus was taken without asking DPOs and was implemented despite DPOs’ written objections.310 Other tools that could be used by states parties for data collection and monitoring are those developed by the Disability Rights Promotion International (DRPI) and the Academic Network of European Disability Experts’ (ANED).311 Historically, case law by the CJEU reflected a medical model of disability; however, since ratifying the CRPD it has held that the concept of ‘disability’ must be interpreted in view of article 1 CRPD. Chacon Navas in 2006 presented the CJEU with the opportunity to interpret the concept of ‘disability’ in the Employment Equality Framework Directive Country Level—A Guidance Note for Country Teams and Implementing Partners’ (UNDG 2011) 70; Jerome E Bickenbach, ‘The ICF and Disability Studies’ in Nick Watson, Alan Roulstone, and Carol Thomas (eds), Routledge Handbook of Disability Studies (Routledge 2012) 59. 300 Steven R Smith, ‘Social Justice and Disability’, in Kristjana Kristiansen, Simo Vehmas, and Tom Shakespeare (eds), Arguing about Disability (Routledge 2009) 17. 301 Rachele Cera, ‘Preamble’ in Della Fina et al (n 10). 302 CRPD preambular para f. 303 304 305 306 Cera (n 301). CRPD preambular para f. ibid. Smith (n 300) 17. 307 Kayess and French (n 3) 25. 308 CRPD Committee, ‘Concluding Observations on the Report of Mongolia’ para 5. 309 Department for Social Inclusion of Persons with Disabilities, ‘The Project’, available at: . 310 Demosthenous (n 297) 25. 311 Marcia H Rioux, Paula C Pinto, and Gillian Parekh, Disability, Rights Monitoring, and Social Change— Building Power out of Evidence (Canadian Scholars’ Press 2015).
kakoullis and ikehara
62
Purpose
of 2000 (Directive). The concept of ‘disability’ was not defined in the Directive, nor did the Directive refer to EU member states’ domestic law for a definition.312 This conceptualization was heavily grounded in the medical model of disability. In 2013, after the EU had ratified the CRPD, the CJEU was provided with another opportunity to interpret the concept of ‘disability’ in the context of the same Directive, in HK Danmark. In this case it acknowledged its earlier judgment in Chacon Navas and then went on to explain that subsequently the EU had ratified the CRPD and hence the conceptualisation must be interpreted in view of article 1 CRPD. This time it built on the conceptualisation in Chacon Navas.313 It also stated that the impairment must be ‘long-term’ in light of article 1 CRPD.314 Its interpretation of the concept of ‘disability’ thus reflected article 1 CRPD. A year later, the CJEU affirmed its interpretation in Z v A Government department.315 The ‘paradigm shift’ in conceptualizing ‘disability’ embodied in the CRPD can thus also be seen in EU disability anti-discrimination law. Further, EU member states must follow the CJEU’s interpretation of the Directive. In view of this, this may have the implication that the CJEU becomes an important actor in the implementation of the CRPD within EU member states. Case law before the ECtHR has been slower than the CJEU to reflect the ‘paradigm shift’ in conceptualizing ‘disability’ that is embodied in the CRPD. However, the case of Glor v Switzerland,316 decided in 2009, suggests that the CRPD’s provisions may be likely to influence the ECtHR’s interpretation of the ECHR when considering cases regarding persons with disabilities.317 In Glor, the ECtHR found a violation of article 14 in conjunction with article 8. It was the first time the ECtHR used the CRPD upon which to base the ‘European consensus’ on the need to protect persons with disabilities from discrimination.318
313 314 Chacon Navas (n 40) para 43. HK Danmark v Dansk (n 38) para 38. ibid. Z v A Government department, The Board of management of a community school [2014] C-363/12 (18 March 2014) para 76. 316 Glor v Switzerland (application no 13444/04) para 53. 317 Jill Stavert, ‘Case Comment—Glor v Switzerland: Article 14 ECHR, Disability and Non-Discrimination’ (2010) 14 Edinburgh Law Review 141; Sandra Fredman, ‘Emerging from the Shadows: Substantive Equality and Article 14 of the European Convention on Human Rights’ (2016) 16 HRLR 273. 318 Glor (n 316). 312 315
kakoullis and ikehara
Article 2 Definitions For the purposes of the present Convention: ‘Communication’ includes languages, display of text, Braille, tactile communication, large print, accessible multimedia as well as written, audio, plain- language, human- reader and augmentative and alternative modes, means and formats of communication, including accessible information and communication technology;
or any other field. It includes all forms of discrimination, including denial of reasonable accommodation;
‘Language’ includes spoken and signed languages and other forms of non spoken languages;
‘Reasonable accommodation’ means necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms.
‘Discrimination on the basis of disability’ means any distinction, exclusion, or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil
‘Universal design’ means the design of products, environments, programmes and services to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design. ‘Universal design’ shall not exclude assistive devices for particular groups of persons with disabilities where this is needed.
1. Introduction 2. Background and Travaux Préparatoires 3. ‘Communication’ 4. ‘Language’ 5. ‘Discrimination on the basis of disability’ 5.1 ‘on the basis of disability’ 5.2 ‘which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise’ 5.3 ‘on an equal basis with others’ 5.4 ‘all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field’ 5.5 ‘all forms of discrimination’ 6. ‘Reasonable accommodation’ 6.1 ‘necessary and appropriate’ 6.2 ‘not imposing a disproportionate or undue burden’ 7. ‘Universal design’
64 64 68 69 71 72 73 74 75 76 78 80 80 82
nilsson
64
Definitions
1. Introduction Article 2 CRPD explains the meaning of key terms of the Convention.1 It should be noted at the outset that article 2 is not the only provision in the treaty that clarifies the scope and content of important terms; article 1, for example, delineates the ratione personae (‘persons with disabilities’) of the Convention and the preamble includes a description of ‘disability’. The reasons for incorporating a specific article on definitions was primarily to clarify the scope of the state obligations laid down in the CRPD and thereby to contribute to the effective implementation of the treaty. The term ‘discrimination’ had acquired a specific meaning under international human rights law, which may differ from how it is interpreted in domestic law. ‘Universal design’, on the contrary, was a fairly new expression in human rights law and thus in need of clarification. In addition, the drafters of the treaty wanted to make visible the disability-specific aspects of the terms listed in article 2 so that they were not excluded or forgotten. The purpose of including ‘communication’, for example, was not to establish a general definition of the term, but to ensure that specific forms of communication are not ignored at the domestic level.
2. Background and Travaux Préparatoires Whether or not the CRPD ought to define certain key concepts was debated early on in the negotiation process. Already the first drafts suggested that certain terms, such as ‘disability’ and ‘discrimination’, ought to be defined.2 Much of the discussions on definitions during the first four sessions before the Ad Hoc Committee concerned whether the treaty text should define ‘disability’ and, if so, how.3 A plethora of different definitions were discussed and rejected.4 As highlighted by several participants during the negotiations, our understanding of ‘disability’ has changed significantly over time, from medically oriented approaches to socially constructed ones and varied between different fields of law.5 Within the field of non-discrimination, ‘disability’ has often been conceptualized in relatively broad terms whereas ‘disability’ in domestic legislation concerning entitlements to economic benefits and social services has been interpreted in a more restrictive manner. Due to the difficulties involved in capturing such a complex phenomenon, negotiating parties eventually agreed not to include a definition of ‘disability’ in article 2. Instead, the preamble describes disability as an evolving concept and as the outcome of the interaction 1 The author wishes to thank the Ragnar Söderberg Foundation which supported the larger research project ‘Proportionality in the Application of International Law: In Search of Coherence’, within which this text was developed. 2 ‘Draft Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’, Annex 1 to the Report of the Working Group to the Ad Hoc Committee UN Doc A /AC265/2004/WG1 (16 January 2004) 9–10 article 3. 3 Ibid 10, fns 12, 13. Daily Summaries of the Fourth Session of the Ad Hoc Committee related to Article 3 Definitions (23 August 2004), available at: (accessed 25 October 2017). 4 This includes proposals based on domestic definitions of ‘disability’ as well as approaches to disability included in human rights instruments such as the Committee on Economic, Social and Cultural Rights’ ‘General Comment No 5 on Persons with Disabilities’ UN Doc E/1995/22 (9 December 1994) para 3, and ‘the Standard Rules on the Equalization of Opportunities for Persons with Disabilities’ UN Doc A/RES/48/ 96 (20 December 1993) para 17. 5 Daily Summaries 23 August 2004 (n 3), statements by Canada, Norway, and Republic of Korea.
nilsson
Article 2
65
between persons with impairments and various barriers that hinders their full and effective participation in society on an equal basis with others.6 As already noted, article 1 describes the rights-holders under the CRPD. The terms ‘language’, ‘discrimination on the basis of disability’, and ‘reasonable accommodation’ also generated intense discussions over their proper meaning. The inclusion of a definition of ‘language’ came about as a response to the resistance among some negotiating parties to recognize sign languages as fully fledged languages.7 For persons with hearing impairments or difficulties to express themselves by speech,8 sign languages are of key importance to ensure access to education, information, and social interaction. For this reason, the World Federation of the Deaf (WFD) and the International Disability Caucus (IDC) advocated successfully for the explicit recognition of sign languages as (natural) languages.9 Key controversies over the definition of disability-based discrimination concerned whether this definition should refer to the concepts of direct and indirect discrimination and how it should delineate the protected group, ie the group of persons who may be discriminated ‘on the basis of disability’. Starting with the first question, the member states of the EU advocated that the treaty text should define direct and indirect discrimination along the lines of EU law, in particular the Employment Equality Directive.10 This proposal was discussed intensively and resisted for different reasons. Government representatives as well as representatives from civil society contended that the distinction between direct and indirect discrimination maintained in EU law was often difficult to uphold in concrete situations.11 There was some support to include references to these forms of discrimination, leaving further elaboration on their normative content to future case law or concluding observations.12 Eventually, it was decided to leave out explicit references to direct and indirect discrimination. Not because the situations that are typically labelled as direct and indirect discrimination ought to fall outside the scope of the Convention, but because of the lack of clarity regarding the precise meaning of ‘direct’ and ‘indirect’ and the delineation between these.13 The debate over who may benefit from the prohibition of disability-based discrimination mainly concerned whether such discrimination should include discrimination Preamble (e) CRPD. Liisa Kauppinen and Marku Jokinen, ‘Including Deaf Culture and Linguistic Rights’ in Maya Sabatello and Marianne Schulze (eds), Human Rights and Disability Advocacy (University of Pennsylvania Press 2013) 133 and 142. 8 People may experience difficulties to communicate verbally for different reasons, including as a consequence of a stroke, head injury, or a neurological condition. 9 Kauppinen and Jokinen (n 7) 134, 140–43. 10 Council Directive 2000/78 establishing a general framework for equal treatment in employment and occupation [2000] OJ L303/16, see Art 2(2). 11 Daily Summaries of the Third Session of the Ad Hoc Committee related to article 7 Equality and Non- discrimination (25 May 2004), recorded statements by Mexico, Japan, Canada, Yemen, European Disability Forum (EDF), World Blind Union (WBU), and World Network of Users and Survivors of Psychiatry (WNUSP), available at: (accessed 25 October 2017). 12 Daily Summaries of the Fourth Session of the Ad Hoc Committee related to article 7 on Equality and non-discrimination (2 September 2004), see recorded statements by Canada, Ghana (on behalf of the African Group), and Israel during the afternoon session, available at: (accessed 20 October 2017). 13 Anna Bruce, Which Entitlements and for Whom? The Convention on the Rights of Persons with Disabilities and its Ideological Antecedents (Lund University 2014). 6 7
nilsson
66
Definitions
based on perceived or past impairments, and whether it should cover situations where someone is put in a disadvantageous situation because of his or her association with a person with a disability. The case in point would be a parent of a child with a disability who is overlooked in a recruitment process because the employer fears that he/she will not be as engaged as other job applicants because of his/her responsibilities as a parent. Early drafts of the treaty text referred to past, perceived, and imputed disabilities as grounds for discrimination.14 It also classified discrimination by association with a person with a disability as a form of discrimination.15 These drafts were inspired by the definition of discrimination included in the Inter-American Convention on the Elimination of All Forms of Discrimination against Persons with Disabilities16 and expressed the view that a broad definition of disability-based discrimination was essential to ensure that it captured the current problems encountered by persons with disabilities.17 None of these specifications, however, made it to the final text. Discussions about ‘reasonable accommodation’ essentially revolved around two questions: Should failure to undertake such accommodation be recognized as a form of discrimination? And, if so, how should the duty to accommodate be formulated and demarcated? The treaty text clearly answers the first question in affirmative. The question was, however, subject to intensive discussions during within the Working Group established by the Ad Hoc Committee in June 2003 to draw up a draft treaty text. A number of state representatives feared that a general duty to accommodate would have serious implications on public resources and argued for a separation of the notion of ‘reasonable accommodation’ from the concept of discrimination.18 By the end of the fourth session of the Ad Hoc Committee, there was general agreement among the drafters to incorporate a duty to accommodate into the definition of disability-based discrimination.19 Focus of the discussion then turned to the second question concerning the scope and content of this obligation. To aid the discussion, the Department of Economic and Social Affairs (DESA) prepared a paper illustrating how national legislation in various countries
14 ‘Compilation of Proposed Revisions and Amendments made by the Members of the Ad Hoc Committee to the Draft Text Presented by the Working Group as a Basis for Negotiations by Member States and Observers in the Ad Hoc Committee’, Annex II to the Report of the Third Session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities UN Doc A/AC265/2004/5 (9 June 2004) article 7(2)(b). 15 ibid. 16 The Inter-American Convention defines discrimination against persons with disabilities as ‘any distinction, exclusion, or restriction based on a disability, record of disability, condition resulting from a previous disability, or perception of disability, whether present or past, which has the effect or objective of impairing or nullifying the recognition, enjoyment, or exercise by a person with a disability of his or her human rights and fundamental freedoms’ [emphasis added]. The Inter-American Convention on the Elimination of All Forms of Discrimination against Persons with Disabilities AG/RES 1608 (XXIX-O/99) (9 June 1999) Art 1(2). 17 Daily Summaries 2 September 2004 (n 12), recorded statements by Australia, Ghana (on behalf of the African Group), Canada, Israel, Jamaica, Mexico, and the United States. 18 ‘Working Group Draft’ (n 2) 14 fn 27; as Quinn puts it, there was a fear that the notion of reasonable accommodation could ‘become a Trojan horse for the enforceability of more and more slices of social and economic rights’—Gerard Quinn, ‘A Short Guide to the United Nations Convention on the Rights of Persons with Disabilities’ in Gerard Quinn and Lisa Waddington (eds), European Yearbook of Disability Law, Vol 1 (Intersentia 2009) 100. 19 Daily Summaries of the Fourth Session of the Ad Hoc Committee related to article 7 on Equality and non-discrimination (3 September 2004), see recorded statements by the Coordinator, Israel, the Netherlands (on behalf of the EU), and Thailand, available at: (accessed 20 October 2017).
nilsson
Article 2
67
had framed the duty to make reasonable accommodations.20 The paper showed that states have used a variety of terms to connote the measures that must be taken to ensure the right to equality for persons with disabilities, including the following: reasonable accommodation, reasonable adjustments, adaptations or measures, and effective or suitable modifications. It further illustrated the diverse terminology that has been used to mark the limits of this duty.21 In the discussion that followed during the seventh session of the Ad Hoc Committee, delegates discussed mainly two alternative ways to qualify the duty to accommodate, namely that it must not impose a ‘disproportionate burden’ or cause ‘undue hardship’ on the duty bearer.22 Delegates in favour of ‘undue hardship’ argued that the term ‘burden’ should be avoided because of its negative connotations and that ‘disproportionate burden’ as a threshold was not demanding enough.23 Other delegates contended that it was too high. A merger of the two terms facilitated agreement.24 A general challenge throughout the drafting process was to find a proper balance between the interest of establishing clear and specific definitions that dispel uncertainties about the scope and content of state obligations and thereby assist effective implementation of the treaty in the domestic context, on the one side, and on the other side, the interest of ensuring that the treaty stays relevant over time.25 The meanings of several of the terms described in article 2 are under constant development, in part because of scientific developments and changing social realities, but also because of altering views on morals and ethics. For example, ‘universal design’ is about creating products and environments that are usable for everyone, to the greatest extent possible, without further accommodations.26 It is about exploring various design solutions and pushing boundaries to strive for inclusion. Technical advances, of course, affect how far we can get towards this goal. New technologies also affect how we interact socially to impart and exchange information, that is how we ‘communicate’, which is another term explained in article 2. Moreover, our views of what constitutes unlawful ‘discrimination’ and what type of obligations states and private actors are required to undertake in order to comply with non-discrimination law has evolved significantly in legal jurisprudence over the last decades.27 International human rights law often responds to this dilemma by formulating the substantive provisions in relatively abstract and general terms to be interpreted in light of present-day circumstances.28 20 ‘The Concept of Reasonable Accommodation in Selected National Disability Legislation: Background conference document prepared by the Department of Economic and Social Affairs’ UN Doc A/AC265/2006/ CRP 1 (7 December 2005). 21 ibid—this included terms such as ‘undue burden’, ‘unjustifiable hardship’, ‘undue hardship’, ‘unreasonable disruption’, ‘unreasonable requirement’, and ‘significantly increased costs’. 22 Daily Summaries of the Seventh Session of the Ad Hoc Committee related to Article 2 Definitions (31 January 2006) see the Chair’s summary in the end of the session, available at: (accessed 25 October 2017). 23 ibid, recorded statements by Canada, Australia, New Zealand, and People with Disabilities Australia. 24 ibid, see the Chair’s summary in the end of the session. 25 ibid, recorded statements by Australia, Qatar, Syrian Arab Republic, Iraq, South Africa, Senegal, and Chile. 26 Art 2 CRPD which corresponds to the meaning ascribed to ‘universal design’ within the field of architecture—see sub-section ‘Universal design’. 27 Oddný Mjöll Arnardóttir describes and discusses this development in a meritorious manner in her chapter ‘A Future of Multidimensional Disadvantage Equality?’ in Oddný Mjöll Arnardóttir and Gerard Quinn (eds), The UN Convention on the Rights of Persons with Disabilities: European and Scandinavian Perspectives (Martinus Nijhoff 2009) 41–66. 28 This method of interpretation is arguably most developed by the European Court of Human Rights, but also the UN treaty bodies, which have held that the treaties they are set up to monitor are ‘living instruments’
nilsson
68
Definitions
3. ‘Communication’ The description of ‘communication’ lists different means for imparting, exchanging, and accessing information commonly used by persons with disabilities. This includes language, display of text, Braille, tactile communication, large print, accessible multimedia, written, audio, plain- language, human- reader, augmentative and alternative modes, means and formats of communication, and information and communication technology. The list is not exhaustive and the drafters’ intention was not to establish a comprehensive definition of communication, but to ensure that specific forms of communication are not excluded from states parties’ understanding of the term.29 The meaning of the first term, ‘languages’ (including sign languages), is described at length in the next section. ‘Display of text’ includes the use of subtitles to communicate speech and sound effects. ‘Braille’ is a tactile system of writing mainly used by persons who are visually impaired. Using six dots (three rows of two dots), this system embodies representations of letters, numbers, and even musical symbols. It produces words as a series of dots for people to read using their fingers.30 Braille users can read and write on embossed paper and communicate electronically with braille displays and devises. The latter are still expensive devises but the search for low-cost alternatives is on-going.31 ‘Tactile communication’ is communication by touch. Touching, handshaking, etc, conveys messages from sender to receiver, the content of which depend on various contextual factors. Tactile sign language, mainly used by persons who are deaf-blind, is another form of tactile communication where the receiving person typically places one or more hands on those of the signer in order to follow what is signed. Braille would be another example of tactile communication in the written form. As we see the different means of communication listed here are not mutually exclusive categories and the fact that a means of communication is mentioned explicitly, such as ‘Braille’ does not mean that it cannot be subsumed under a broader category, such as ‘tactile communication’. ‘Large print’ refers to the use of fonts larger than usual in books and other texts. The meaning of ‘multimedia’ was not given much attention during negotiations; the term typically refers to the use of a combination of different means (text, audio, video, animations etc) to communicate.32 ‘Plain-language’ is language that is clear and adapted to the intended audience so that they can understand and use the information that is communicated. The term does not appear in other provisions of the Convention, but the related concept ‘easy to read’ is mentioned twice in the treaty text.33 Easy to read refers to written information that is easy for persons with intellectual disabilities to understand. Such texts that must be interpreted in light of changing realities and ethics. See Birgit Schlütter, ‘Aspects of Human Rights Interpretation by the UN Treaty Bodies’ in Hellen Keller and Gier Ulfstein, UN Human Rights Treaty Bodies— Law and Legitimacy (CUP 2012) 265 and 282ff. Daily Summaries 31 January 2006 (n 22) recorded statement by the Chair summarizing the discussion. The system was created by Louis Braille (1809–52), a French teacher who became blind at the age of three following an accident. In order to make his instruction easier, he drew in Charles Baribier’s system for writing in the dark designed for secret communication of diplomatic and military information and developed the Braille system. See Javier Jiménez, Jesús Olea, Jesús Torres, Inmaculada Alonso, Dirk Harder, and Konstanze Fischer, ‘Biography of Louis Braille and Invention of the Braille Alphabet’ (2009) 54 Survey of Ophthalmology 142. 31 See eg, Alexander Russomanno, Sile O’Modhrain, Brent R Gillespie, and Matthew W M Rodger, ‘Refreshing Refreshable Braille Displays’ (2016) 8 IEEE Transactions on Haptics 287. 32 cf English Oxford Living Dictionary, available at: (accessed 20 October 2017). 33 Arts 9 (2)(d), 29(a)(i) CRPD. 29 30
nilsson
Article 2
69
are written in short sentences and plain language without complex vocabulary, metaphors, acronyms, and similar features that may confuse and obstruct understanding of the text. In many countries, self-advocacy groups have developed or initiated the development of guidelines for making information easy to read and understand.34 Information about the CRPD and translations of the treaty text are available in easy to read formats in several countries.35 ‘Human-reader’ simply refers to the practice of reading a text out loud. Last but not least the description of communication refers to ‘augmentative and alternative modes, means and formats of communication’. This reference serves to remind us that there are many ways to communicate and that the examples given above (Braille, display of text, plain language etc) are but examples of various means and modes that can enable effective communication. From the jurisprudence of the CRPD Committee, we can add steno captioning (ie real-time captioning) to the list.36 Communication includes ‘information and communication technology’ (ICT), which is an umbrella term for various systems for storing, retrieving, and sending information.37 This includes a wide range of technologies, such as radio, television, satellite, mobile phones, fixed lines, computers, network hardware and software.38 The importance of these technologies lies in their ability to provide access to information and services that have been out of reach for persons with disabilities and to offer opportunities for interaction and participation in society.39
4. ‘Language’ The term ‘language’, in the context of the CRPD, includes spoken and signed languages as well as other forms of non-spoken languages.40 Sign languages are languages which chiefly use hands, arms, and facial expressions to convey meaning. They arise when deaf people converge and form a community and are important parts of local deaf cultures41 and are not visual representations of spoken languages through the use of the hands. Sign languages are independent languages, each with its own vocabulary, grammar, and 34 eg Inclusion Europe, ‘Information for All— European Standards for Making Information Easy to Read and to Understand’ (2009), available at: (accessed 20 October 2017). 35 eg in Japan and Sweden. 36 CRPD Committee, Gemma Beasley v Australia, Communication No 11/2013 (1 April 2016) para 8.8 and Michael Lockrey v Australia, Communication No 12/2013 (1 April 2016) para 8.8. 37 cf English Oxford Living Dictionary, available at: (accessed 20 October 2017). 38 CRPD Committee, ‘General Comment No 2 on Art 9: Accessibility’ UN Doc CRPD/C/GC/2 (22 May 2014) para 5. 39 For a discussion of ICT’s potential to open political space for persons with disabilities and the risk that ignorance of ICT accessibility will entrench political marginalization, see Janet E Lord, ‘Accessible ICT and the Opening of Political Space for Persons with Disabilities’ in Jonathan Lazard and Michael Ashley Stein (eds), Disability, Human Rights, and Information Technology (Pennsylvania University Press 2017) 24. Persons with disabilities still face many barriers when trying to access the web and use mobile applications, but progress is being made. 40 Art 2 speaks of ‘signed language’ and other treaty provisions use the term ‘sign language’. Both terms refer to the same concept. The word ‘signed’ in article 2 is used to logically accompany ‘spoken’ when referring to languages. Other articles speak of sign language only. Under such circumstances, the term ‘sign language’ is more appropriate. Daily Summaries 31 January 2006 (n 22) statement by representative from the International Disability Caucus (IDC). 41 cf Art 30(4) which entitles persons with disabilities to equal recognition and support of their specific cultural and linguistic identity, including sign languages and deaf culture.
nilsson
70
Definitions
structure.42 They vary locally between, and sometimes within, countries in a manner that does not entirely map on to the spoken languages.43 The 2017 edition of Ethnologue lists 140 national sign languages spoken by little over 13 million people all over the world.44 In addition to these languages there are a wealth of regional sign languages and ‘home signs’ (ie gestural communication that arises when a deaf child grows up within a family where none of the family members knows a conventional sign language). Some national sign languages have obtained legal recognition in their domestic context, others have not. Today, about thirty state parties to the CRPD have recognized their respective sign language(s) in domestic legislation.45 Some states (eg Austria, Ecuador, Kenya, and New Zealand) have recognized their respective sign languages in their constitutions.46 Other states parties (e.g. Brazil, Czech Republic, Poland, and Sweden) give recognition to sign languages in general laws on language or in specific laws on sign language.47 The type of legislation does not necessarily reflect the weight attached to protecting and promoting sign languages in the domestic context. Constitutional protection appears as the most prestigious from a legal point of view but it can be purely symbolic.48 Whilst legal recognition might satisfy article 2 of the CRPD, other provisions of the treaty set forth the specific state obligations related to the actual protection and promotion of these languages.49 Furthermore, article 2 asserts that the term ‘language’ includes ‘other forms of non spoken languages’. The meaning of this expression is not easily grasped.50 The reference was introduced during the seventh session of the Ad Hoc Committee.51 At this session there was a discussion about what constitutes a language. As noted above, sign languages were, after lengthy debates and advocacy, recognized as genuine languages. The question was raised whether tactile communication can constitute languages, but no agreement on this matter can be discerned from the records over the debate before the Ad hoc 42 Within research on linguistics, sign languages have been recognized as full, complex, and independent human languages since the1960s. See Roland Pfau, Markus Steinbach, Benice Woll (eds), Sign Language: An International Handbook (De Gruyter Mouton 2012) 1. 43 Unlike spoken British and American English, British and American Sign Language vary significantly from each other. Perhaps the most obvious difference is that American Sign Language uses a one-handed fingerspelling alphabet while British Sign Language uses a two-handed alphabet. British, Australian, and New Zealand Sign Language, on the other hand, are often viewed as dialects of a single parent language, BANZSL (British, Australian, and New Zealand Sign Language). 44 Available at: (accessed 24 October 2017). According to the same source there are over 7,000 spoken languages. The number of users of sign language indicate that only a small percentage of the world’s approximately 70 million deaf people in the world have the opportunity to learn and use a sign language. 45 Martjee de Meulder, ‘The Legal Recognition of Sign Languages’ (2015) 8 Sign Languages Studies 498. 46 ibid 500–01. 47 ibid 503. The Czech and Polish laws cover sign languages as well as other means of communication. 48 ibid 501. 49 Art 24(3)(b) CRPD on education asserts that deaf pupils have the right to learn in sign language; Art 30(4) CRPD entitles deaf people to recognition and support of their cultural and linguistic identity, ie sign languages and deaf culture; Art 21(b) and (e) CRPD on freedom of expression obliges states to promote the use of sign languages, and Art 9(2)(e) CRPD on accessibility requires states parties to provide sign language interpreters. 50 Some would say that it is linguistically impossible to understand. Kauppinen and Jokinen, ‘Including Deaf Culture’ (n 7) 143. 51 ‘International Convention on the Rights of Persons with Disabilities—Working Text’, Annex II to the Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its Seventh Session UN Doc A/AC265/2006/2 (13 February 2006) Art 2.
nilsson
Article 2
71
Committee.52 Arguably tactile sign languages constitute a sub-category of signed languages and thus enjoy the status of being a language under the Convention.53 A possible, and sympathetic, interpretation of this reference is that it reflects a desire among drafters to be inclusive. There may be, or may in the future arise languages, besides spoken and singed ones that are or will become important to persons with disabilities and which, therefore, deserve to be recognized as languages under the CRPD.
5. ‘Discrimination on the basis of disability’ Discrimination is a key concept in the CRPD and runs throughout the text of the Convention. The term appears in four provisions in the preamble and—besides article 2—in nine provisions in the treaty text. This includes article 3, which sets forth the general principles of the CRPD and article 4, detailing states parties’ general obligations to ensure full realization of the protected rights in the domestic context.54 Discrimination can take many forms; it may be direct or indirect, assume the form of sexual harassment or denial of reasonable accommodation. And the prohibition of these different forms of discrimination can be said to serve different but related purposes. As Fredman has demonstrated, anti-discrimination norms serve to redress comparative disadvantage and counter prejudice, stigma, and stereotyping based on a protected identity marker.55 They can enable social and political participation of marginalized groups and offset social exclusion.56 Discrimination on the basis of disability is defined as certain practices (acts or omissions), namely disability-based distinctions, exclusions, or restrictions, which have the purpose or effect of impairing or nullifying the recognition, enjoyment, or exercise, on an equal basis with others, of human rights and fundamental freedoms. The definition resembles its sister provisions in previous UN human rights instruments, such as CEDAW and CERD,57 and it is almost identical to the definition of disability-based discrimination provided by the Committee on Economic, Social and Cultural Rights in its well-known and pioneering General Comment No. 5 from 1994.58 The definition is formulated in abstract terms and during the negotiations it was discussed whether the definition ought to include a more elaborate description of the practices that may constitute discrimination.59 The drafters, however, agreed to use the same language as is used in CEDAW and
52 Comment by People with Disability Australia on Article 2 submitted electronically during the Seventh Session, available at: (accessed 10 January 2018); see also Daily Summaries 31 January 2006 (n 22). 53 Tactile signers have a more limited array of communicative means than other signers. Nonetheless, tactile sing languages are comprehensive languages independent from spoken languages—see eg Johanna Mesch ‘Tactile Sign with One-Handed Perception’ (2013) 13 Sign Languages Studies 238, 239f. The CRPD Committee also speaks of tactile sign languages and tactile signing rather than tactile communication when referring to this form of communication—see eg CRPD Committee, ‘General Comment No 2’ (n 38) paras 29–30. 54 See paras c, d, h, and p in the preamble and Arts 3, 4, 5, 6, 23, 24, 25, 27, and 28 CRPD. 55 56 Sandra Fredman, ‘Substantive Equality Revisited’ (2016) 14 ICON 712, 727. ibid. 57 Art 1 CEDAW and Art 1 CERD. 58 Committee on Economic, Social and Cultural Rights, ‘General Comment No 5’ (n 4) para 15. 59 eg Israel suggests that in addition to distinction, exclusion, and restriction, the text should mention ‘condition, act, policy or requirement’ as examples of practices that may constitute discrimination. The proposal, however, received limited support. Daily Summaries 2 September 2004 (n 12), see recorded statements by China, the Coordinator, Israel, the Netherlands (on behalf of EU), and Norway.
nilsson
72
Definitions
CERD and thereby link the definition of disability-based discrimination to an existing body of non-discrimination jurisprudence.60 In this jurisprudence from UN treaty bodies and regional human rights courts, direct discrimination is commonly thought of as practices that prevent members of protected groups from enjoying or exercising an entitlement that is protected under human rights law (eg voting or accessing education) for reasons that are somehow related to a discriminatory ground. Direct discrimination is probably the most obvious form of discrimination occurring when a person is treated less favourably than another person in a similar situation for reasons that are directly linked to a discriminatory ground.61 Denying a student with a psychosocial condition access to a university education because of his diagnosis would be one obvious example. Dismissing testimonies from a victim of violence in court proceedings because the victim is a woman with an intellectual disability is another example.62 The presence of an impairment or a disability63 does not, however, have to be the sole reason for exclusion. The prohibition of discrimination has been interpreted to cover also disadvantageous treatment that is based on reasons that appear to be neutral, but which produce a disparate impact on protected groups. This is often called indirect discrimination.64 The ensuing three sections address the key prerequisites that make up the definition of disability-based discrimination. This is followed by a discussion of its scope of application and an overview of the forms of discrimination that are covered by the affirmation that disability-based discrimination ‘includes all forms of discrimination’.
5.1 ‘on the basis of disability’ Whilst the CRPD protects persons with disabilities against discrimination on any ground, as well as combination of grounds, the definition of discrimination in article 2 concerns disability-based discrimination. As noted above, the proper scope of such discrimination generated much discussion during the negotiation process. A contentious question was whether the definition should cover disadvantageous treatment based on perceived or past impairments or disabilities, and whether it should extend to situations where someone is put in a disadvantageous situation because of his or her association with another person with disabilities. Early drafts of the treaty text explicitly referred to past, perceived, and 60 ibid; see also ‘Report of the Coordinator to the Fourth Session of the Ad Hoc Committee’ Annex IV to the Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its fourth session, UN Doc A/59/360 (14 September 2004) para 22. 61 CRPD Committee, ‘General Comment No 3 on Women and Girls with Disabilities’ UN Doc CRPD/ C/GC/3 (26 November 2016) para 17 and ‘General Comment on Equality and Non-discrimination (Art 5)— First draft as at 31 August 2017’ para 20(a), available at the Committee’s website: (accessed 27 October 2017); see also European Court of Human Rights, D H and Others v the Czech Republic, App no 57325/00) 13 November 2007 para 175. 62 ibid. 63 The definition of discrimination refers to the term ‘disability’ and not impairment. This should not be misunderstood to imply that the definition of discrimination would not cover situations where, for instance, an employer refuses to hire qualified blind people simply because of their impairments. During the negotiations, delegates often used the term ‘disability’ to cover both the phenomena of disability and impairment. This may be explained by its fluid usage in different discourses. It may also be the result of the negotiating parties’ (laudable) ambition to describe deficits in social inclusion as being the result of disability and not impairment per se—cf Stefan Trömel, ‘A Personal Perspective on the Drafting History of the United Nations Convention on the Rights of Persons with Disabilities’ (2009) 1 European Yearbook of Disability Law 124. 64 CRPD Committee, ‘General Comment No 3’ (n 61) para 17.
nilsson
Article 2
73
imputed disabilities as grounds for discrimination, but none of these terms made it to the final text.65 This does not, however, necessarily mean that they are not part and parcel of the definition. As argued by several negotiating parties, the phrase ‘on the basis of disability’ may certainly be interpreted to include discriminatory treatment based on actual and perceived, past and present, personal and associated disabilities.66 In its jurisprudence, the CRPD Committee has interpreted the prohibition of disability-based discrimination to include disadvantageous treatment based on perceived disability and by reason of association with a person with a disability.67 European regional courts68 and domestic law in some states parties69 have taken the same position. This indicates that the focus of the prohibition of disability-based discrimination is not whether the person placed in a disadvantageous position actually has an impairment, but whether a certain disadvantageous practice is based on illegitimate reasons, or whether it may be otherwise justified.70
5.2 ‘which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise’ This reference to the harmful ‘purpose or effect’ of a discriminatory practice originates from the definitions of discrimination in CEDAW and CERD. In jurisprudence, it has been interpreted to imply that the prohibition of discrimination in international human rights law covers not only practices which are motivated by a discriminatory purpose but also practices that have a discriminatory ‘effect’.71 Thus discrimination does not need to be driven by prejudice or hatred versus a certain group. It can be an (inadvertent) result of practices and policies that are set up to serve legitimate aims but which have disparate impacts on protected groups. For example, job advertisements stating that applicants must possess a driver’s licence will have a disparate impact on persons with certain disabilities Compilation of Proposed Revisions, Third Session (n 14) article 7(2)(b). Daily Summaries 2 September 2004 (n 12) see recorded statements by Canada and Netherlands (on behalf of the EU). This question is at its core an issue of the coverage of the CRPD in terms of who is protected, and was negotiated simultaneously as a question concerning the scope of discrimination as well as the scope of ‘persons with disabilities’. See Bruce, Which Entitlements (n 13) 311–13. 67 CRPD Committee, ‘General Comment No 3’ (n 61) paras 17(c) and 53, ‘Concluding Observations on the Initial Report of Spain’ UN Doc CRPD/C/ESP/1 (19 October 2011) paras 19–20, and ‘Concluding Observations on the Initial Report of Belgium’ UN Doc CRPD/C/BEL/CO/1 (28 October 2014) paras 11–12. 68 S Coleman v Attridge Law and Steve Law [2008] C–303/06. The case concerned a non-disabled mother of a child with a disability who was dismissed from her employment for reasons related to her parenting responsibilities. The Court of Justice of the EU (CJEU) did not expressly label this malpractice as ‘discrimination by association’ but it held that that principle of equal treatment applies not to a particular category of persons but to a set of grounds, and that the prohibition of direct discrimination is not limited to people who are themselves disabled; see paras 38 and 50–56; the European Court of Human Rights has held that the prohibition of discrimination in Art 14 of the ECHR covers instances in which an individual is treated less favourably on the basis of another person’s status or protected characteristics (emphasis added). Guberina v Croatia App no 23682/13 (22 March 2016) para 78. 69 Even before S Coleman v Attridge Law and Steve Law (n 68) a few EU member states had chosen to explicitly prohibit discrimination by association on the basis of disability—see Lisa Waddington, ‘S. Coleman v Attridge Law and Steve Law’ (2009) 46 CMLRev 665, 672f. The concept of discrimination by association is perhaps most established under the Americans with Disabilities Act (1990), § 12112(b)(4). The USA, however, has signed but not ratified the CRPD. 70 Trömel, ‘A Personal Perspective’ (n 63) 124. 71 The UN HRCtee clarifies this point in Joseph Frank Adams v the Chez Republic Communication No 586/ 1994, 23 July 1996 para 12.7. The European Court of Human Rights has expressed the same position in D H and Others v the Czech Republic (2008) 47 EHRR 3 para 184. 65 66
nilsson
74
Definitions
and therefore need to be justified to comply with the prohibition of discrimination.72 Tax fees for persons who do not carry out military service would be another example.73 According to the CRPD Committee, an inaccessible environment can also give raise to indirect discrimination.74 During the negotiations of the CRPD attempts were made to elaborate further on the distinction between direct and indirect discrimination in the treaty text.75 In the end it was decided to leave out explicit references to direct and indirect discrimination. Not because practices that are typically labelled as direct and indirect discrimination fall outside the scope of the Convention, but because the precise meaning of ‘direct’ and ‘indirect’ and the delineation between these was difficult to pin down.76 Indeed, the CRPD Committee has confirmed that disability-based discrimination can be direct or indirect,77 with or without discriminatory intent,78 and take several other forms (see below, section ‘all forms of discrimination’).
5.3 ‘on an equal basis with others’ The definition of discrimination asserts that persons with disabilities are entitled to enjoy human rights and fundamental freedoms ‘on an equal basis with others’. That phrase is not confined to the definition of discrimination in article 2; rather, it appears like a mantra repeated thirty-one times throughout the treaty text, the preamble included. Often, the introduction of this phrase was intended to signal that the drafters were not aiming to create ‘new rights’ for persons with disabilities (ie entitlements over and above those granted to persons without disabilities), but to explicate the normative content of existing human rights when applied to the disability context.79 Similar phrases are included in the definitions of discrimination in CERD and CEDAW,80 and its incorporation in the CRPD’s definition of discrimination is maybe best understood against this background. Having discussed the normative content of the prohibition of discrimination at length, the drafters of the CRPD agreed to formulate the definition of disability-based discrimination in language that closely resembled the definition in CEDAW.81 On occasion, the CEDAW Committee has used the similar phrase ‘on the basis of equality’ to stress that the non-discrimination norms codified in CEDAW do not stop at requiring states to ensure that men and women have equal rights 72 Suppose it is a taxi company that is seeking to hire new staff. If the company is looking for administrative staff working in-house, then being able to drive may not be an essential qualification for the job and therefore unjustified. If, on the other hand, the company is looking for taxi drivers, few would say that the requirement that applicants must possess a driver’s licence discriminates on the basis of disability. 73 cf Glor v Switzerland App No 13444/04 (30 April 2009). 74 In its ‘General Comment No 3’ (n 61), the CRPD Committee uses the case of inaccessible examination beds for gynaecological screenings as an example of indirect discrimination of women with disabilities—see para 17(b). 75 76 See Background and Travaux Préparatoires. Bruce, Which Entitlements (n 13) 228. 77 CRPD Committee, ‘General Comment No 3’ (n 61) para 17. 78 CRPD Committee, Marlon James Noble v Australia, Communication No 7/ 2012, (2 September 2016) para 8.3. 79 For a thorough and theoretical analysis of the matter of ‘new rights’, see Frédéric Mégret, ‘The Disabilities Convention: Human Rights of Persons with Disabilities or Disability Rights?’ (2008) 30 HRQ 494. 80 The definition of discrimination against women in CEDAW includes the phrase ‘on a basis of equality of men and women’ (Art 1) and the definition of discrimination in CERD incorporate the phrase ‘on an equal footing’ (Art 1). 81 cf ‘Report of the Coordinator’ (n 60) para 22.
nilsson
Article 2
75
de jure. States must take action to ensure that women and men enjoy equal rights in practice.82 The HRCtee has interpreted this phrase to signal that equal enjoyment of rights and freedoms does not mean ‘identical treatment’.83 Differential treatment is permissible under human rights law; under certain circumstances it is even required.84 The CRPD Committee has expressed the same idea. In a case concerning permission to build an indoor hydrotherapy pool, the key question was whether the refusal of such permission, because it conflicted with the city development plan, could constitute discrimination.85 Given the importance of the pool for the claimant—without it, she would have to move from home to a specialized health care institution—the Committee held that refusal to grant building permission was discriminatory because absent an objective and reasonable justification it failed to ‘treat differently persons whose situations are significantly different’.86
5.4 ‘all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field’ The reference to ‘all human rights and fundamental freedoms’ [my italics] indicates that the prohibition of discrimination on the basis of disability covers not only rights that are provided by the CRPD but also other human rights entitlements protected in other sources of international law. This coheres with the object and purpose of the Convention which is to ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities.87 And the end phrase ‘any other field’ implies that the prohibition of discrimination on the basis of disability covers not only public but also private life. The formulation is taken from the definition of discrimination against women in CEDAW.88 When read in combination with 4(e) CRPD, which obliges states to combat discriminatory practices ‘by any person, organization or private enterprise’, this amounts to a clear recognition of the need to address discriminatory practices that occur in the private sphere. This has been recognized for long. Already in 1994, the 82 CEDAW Committee, ‘General Recommendation No 28 on the Core Obligations of States Parties under Article 2 of the Convention on the Elimination of All Forms of Discrimination against Women’ UN Doc CEDAW/C/GC/28 (16 December 2010) para 9. For a discussion on this point, see Andrea Broderick, The Long and Winding Road to Equality and Inclusion for Persons with Disabilities: The United Nations Convention on the Rights of Persons with Disabilities (Intersentia 2015) 92f. 83 HRCtee, ‘General Comment 18: Non-discrimination’ UN Doc HRI/GEN/1/Rev 1 (10 November 1989) para 8. The Committee use the phrase ‘on an equal footing’. This phrase occurred in early drafts of the CRPD but was replaced with ‘on an equal basis with others’ because the latter was considered as more appropriate language. 84 The HRCtee takes Art 6 of the Covenant (the right to life) as an example and points to how this provision proscribes the imposition of a death sentence on some segments of the population (minors and pregnant women) but not others; ibid. 85 CRPD Committee, H M v Sweden, Communication No 3/2011 (19 April 2012) para 4.12. 86 ibid para 8.3. The same phrase figures in jurisprudence from the European Court of Human Rights—see eg Thlimmenos v Greece (2000) 31 EHRR 411 para 44; for a discussion of the meaning of the terms ‘objective and reasonable’, see Anna Nilsson, ‘Objective and Reasonable? Scrutinising Compulsory Mental Health Interventions from a Non-discrimination Perspective’ (2014) 14 HRLR 459. 87 Art 1 CRPD. 88 Art 2 CEDAW. cf the definition of racial discrimination in article 1 in CERD which is confined to human rights in ‘the political, economic, social, cultural or any other field of public life’ (emphasis added). Still, the CERD requires its states parties to prohibit racial discrimination ‘by any persons, group or organization’ (Art 2(d)) and to ensure that victims of discrimination have access to an effective remedy for the harm suffered by such discrimination (Art 6). For a thorough analysis of the problèmatique of extending human rights obligations to private subjects see Andrew Clapham, Human Rights Obligations of Non-state Actors (OUP 2006).
nilsson
76
Definitions
Committee on Economic, Social and Cultural Rights took note of the trend to privatize public services and emphasized the need to subject private employers, private suppliers of goods and services, and other non-public entities to non-discrimination norms in relation to persons with disabilities.89
5.5 ‘all forms of discrimination’ The definition of discrimination in the CRPD explicitly states that it includes ‘all forms of discrimination, including denial of reasonable accommodation’. The duty to accommodate figured in pre-CRPD soft-law90 and is one of the defining features of American91 and EU92 disability-discrimination law. With the CRPD it is embedded in a binding human rights treaty and the importance of this obligation can hardly be overestimated.93 It requires employers, teachers, shop owners, public authorities, and other duty-bearers to remove barriers that prevent persons with disabilities from participation in social activities on a daily basis. The precise scope of this obligation is discussed further below. The remaining part of this section identifies and discusses the other forms of discrimination covered by the definition. We know from the aforementioned discussion in this chapter that the definition certainly covers both direct and indirect discrimination, and arguably also disadvantageous treatment based on past and perceived disabilities, as well as discrimination by association.94 In addition, the treaty text refers to harassment and multiple discrimination against women.95 ‘Harassment’ is a term that has not been subject to much discussion; up until now there are very few references to the term in the negotiating records and the outputs of the CRPD Committee. In its draft General Comment on Equality and Non-discrimination, the Committee describes harassment as an unwanted conduct related to disability or other prohibited grounds which have the purpose or effect of violating the dignity of a person and of creating an intimidating, hostile, degrading, humiliating, or offensive environment.96 This includes making fun of an impairment. Bullying and hatred expressed on the Internet constitute particularly harmful forms of harassment.97 This understanding of harassment concurs with how the term is defined in EU non-discrimination directives.98
See eg Committee on Economic, Social and Cultural Rights, ‘General Comment No 5’ (n 4) para 11. ibid para 15 and Standard Rules 1993 (n 4) rule 7. 91 See eg Michael Ashley Stein, ‘Same Struggle Different Difference: ADA Accommodations as Anti discrimination’ (2004) 153 U Pa L Rev 579. 92 Employment Equality Directive 2000 (n 10) Art 5. See also European Commission, ‘Reasonable Accommodation for Disabled People in Employment: A Legal Analysis of the Situation in EU Member States, Iceland, Liechtenstein and Norway’ (2016) prepared by Delia Ferri and Anna Lawson on the basis of country reports provided by the European network of legal experts in gender equality and non-discrimination. 93 As Lawson puts it ‘the success of any policy to promote the full inclusion of disabled people in mainstream society is likely to depend, in part, on the extent to which it is underpinned by effective reasonable accommodation obligations’—Anna Lawson, ‘The UN Convention on the Rights of Persons with Disabilities and European Disability Law: A Catalyst for Cohesion?’ in Oddný Mjöll Arnardóttir and Gerard Quinn (eds), The UN Convention on the Rights of Persons with Disabilities: European and Scandinavian Perspectives (Martinus Nijhoff 2009) 93. 94 95 See sub-section ‘on the basis of disability’. Arts 6 and 27(1)(b) on work and employment. 96 CRPD Committee, ‘Draft General Comment on Equality and Non-discrimination’ (n 61) para 20(d). 97 ibid. 98 Harassment features as a specific type of discrimination in several EU non-discrimination directives—see eg Employment Equality Directive 2000 (n 10) Art 2(3). 89 90
nilsson
Article 2
77
‘Multiple discrimination’ of women occurs when a woman experiences discrimination on two or more grounds, leading to discrimination that is ‘compounded or aggravated’.99 The compounded effect can be sequential; for example, a woman with a disability can be discriminated because of her sex/gender on one occasion (eg in the health care context) and because of her impairment/disability on another (eg in the labour market). It can also be that the woman is discriminated because of her sex and disability on the same occasion.100 A woman can be turned down for a job for several reasons, such as her gender or disability. Several states parties recognize such multiple discrimination in their domestic jurisdictions.101 In addition to the above forms of discrimination, the CRPD Committee has included the following terms under the umbrella phrase ‘all forms of discrimination’: intersectional discrimination, systemic, or structural discrimination.102 Other UN treaty bodies have produced similar lists over different types of discrimination that fall within the ambit of international human rights law.103 As has been pointed out by several authors, the terms ‘multiple discrimination’, ‘intersectional discrimination’, ‘systemic discrimination’, and ‘structural discrimination’ have been conceptualized in various ways and there is currently no settled terminology in international human rights law and literature.104 The CRPD Committee describes ‘structural’ and ‘systemic’ discrimination as referring to the same phenomena, namely hidden or overt patterns of discriminatory institutional behaviour, cultural traditions and social norms and/or rules.105 The Committee on Economic, Social and Cultural Rights has depicted this problem in similar terms. It has held that disadvantageous treatment of some groups is pervasive and ‘deeply entrenched in social behaviour and organization’.106 Systemic discrimination can manifest itself through legal rules, policies, practices, and cultural attitudes in either the public or private sector which create relative disadvantages for some groups and privileges for others.107 ‘Intersectional discrimination’ refers to a situation where several grounds interact with each other at the same time in such a way as to be inseparable.108 It can (and has been) be 99 CRPD Committee, ‘General Comment No 3’ (n 61) para 4(c). Already in its General Comment No 5 (n 4), the Committee on Economic, Social and Cultural Rights noted the ‘double discrimination’ faced by many women with disabilities (para 19); see also CEDAW Committee, ‘General Recommendation No 28’ (n 82) para 18, and Committee on Economic, Social and Cultural Rights, ‘General Comment No 20 on Non-discrimination in Economic, Social and Cultural Rights (Art 2, para 2)’ UN Doc E/C12/GC/20 (2 July 2009) paras 17 and 27. 100 cf Sandra Fredman, ‘Intersectional Discrimination in EU Gender Equality and Non-discrimination Law’ (European Commission 2016) 27. 101 See eg the FYROM Law on the Prevention and Protection Against Discrimination (2010) Art 12, and the Austrian Federal Equal Treatment Act (1993) BGBI 1993/100 § 19a. 102 CRPD Committee, General Comment No 3’ (n 61) para 17. Early drafts of the CRPD did include an explicit reference to ‘systematic discrimination’. Negotiating parties, however, thought the term was unclear and demonstrated little willingness to clarify its meaning in the treaty text. Instead, it was removed—see Daily Summaries 2 September 2004 (n 12), recorded statements by Australia, Canada, Israel, Netherlands (on behalf of EU), Norway, and Serbia and Montenegro. 103 Committee on Economic, Social and Cultural Rights, ‘General Comment No 20’ (n 99) paras 10, 12, 17, and 27, CEDAW Committee, ‘General recommendation No 28’ (n 82) paras 9, 16, and 18. 104 See eg Fredman, ‘Intersectional Discrimination’ (n 100) 27 and Ben Smith, ‘Intersectional Discrimination and Substantive Equality: A Comparative and Theoretical Perspective’ (2016) 16 Equal Rts Rev 73. 105 CRPD Committee, ‘General Comment No 3’ (n 61) para 17 (e). 106 Committee on Economic Social and Cultural Rights, ‘General Comment No 20’ (n 99) para 12. 107 ibid. 108 CRPD Committee, ‘General Comment No 3’ (n 61) 4(c). For an overview of the grounds additional to disability present in the negotiations and the final text of the CRPD see Bruce, Which Entitlements (n 13) 330–41.
nilsson
78
Definitions
viewed as a sub-category of multiple discrimination because it involves disadvantageous treatment that is related to more than one ground or power structure (sexism, racism, ableism, etc).109 The interplay between these power structures can be very complex, and in some situations it is difficult to link a certain practice to one or more grounds because the disadvantage experienced by one group of women is not necessarily the same as the disadvantage experienced by other groups of women.110 For example, employers may well employ women and men with disabilities but still reject women with disabilities, or women with disabilities above a certain age.111 Or, a state’s efforts to combat violence against women may fail to address the specific needs of women residing in institutions and/or who belong to minorities. An intersectional approach to such situations aims to make visible the different power structures at play in such situations and how they intersect to cause specific types of disadvantage. Precisely how this heightened consciousness of different and interrelated forms of oppression ought to affect discrimination analysis in concrete cases is still a matter of contention. In the European context, there is a growing body of jurisprudence that draws on the insights upon which intersectionality theories rest.112
6. ‘Reasonable accommodation’ The concept of reasonable accommodation builds on the idea that it takes more than restraint of biased and ignorant behaviour to ensure equal enjoyment of human rights. Persons with disabilities face not only attitudinal barriers when engaging in society but also physical, environmental, administrative, and legal ones, as well as technical and language-related barriers that circumscribe their access to information and opportunities to communicate with others. Removing such obstacles requires positive action and allocation of resources. The legal construct of reasonable accommodation originates from the United States and the context of discrimination based on religious belief.113 The concept spread to the Rehabilitation Act (1973) and was subsequently incorporated into the Americans with Disabilities Act (1990). In 2000, the duty for employers to accommodate was introduced in EU law (Employment Equality Directive).114 With the entry into force of the CRPD in 2008 this duty was extended beyond the labour market to cover all spheres of life protected under human rights law. Recently, the European Court of Human Rights (ECtHR) held that the prohibition of disability-based discrimination laid Smith, ‘Intersectional Discrimination’ (n 104) 80. Intersectionality and intersectional discrimination originates from Kimberly Crenshaw’s pioneering work, see eg Kimberly Crenshaw, ‘Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Anti-discrimination Doctrine, Feminist Theory, and Anti-racist Policies’ (1989) University of Chicago Legal Forum 139; in this article, Crenshaw critiqued American anti-discrimination law for failing to protect black women. 111 In many countries employment rates for women with disabilities are lower than the rates for non- disabled women and disabled men, WHO and WB, ‘World Report on Disability’ (2011) 237. 112 eg the European Court of Human Rights has recognized the particular vulnerability of an African woman working as a prostitute in a case concerning failure to investigate claims of racist violence. B S v Spain App No 47159/08 (24 July 2012) para 62; eg the Court of Justice of European Union has dealt with the specific disadvantage experienced by older women and pregnant women. For an overview, see Fredman, ‘Intersectional Discrimination’ (n 100) 71ff. 113 Leticia Campos Velho Martel, ‘Reasonable Accommodation: The New Concept from an Inclusive Constitutional Perspective’ (2011) 8 IJHR, 84, 88. 114 Employment Equality Directive 2000 (n 10) Art 5. 109 110
nilsson
Article 2
79
down in the European Convention of Human Rights (ECHR) must be read in light of the CRPD and that it consequently covers refusal to make reasonable accommodation.115 The CRPD includes other obligations to transform the places, goods, and services that are available to the public so that persons with disabilities can access and use them on an equal basis with others. Article 4 obliges states parties to promote the development of universally designed goods and services, mobility aids, and other forms of assistive technology.116 And article 9 requires states to take action to ensure that persons with disabilities have equal access to the built environment, to transportation, to information and communications, and to other facilities and services that are open or provided to the public.117 The difference between the obligations enshrined in articles 4 and 9 compared to the duty to take reasonable accommodation is not clear-cut, but the latter is construed as an ex nunc duty that arises from the moment an individual requires some degree of accommodation.118 This duty is immediate, in the sense that failure to accommodate violates the prohibition of discrimination.119 Accessibility obligations in articles 4 and 9, on the other hand, are understood as ex ante obligations. This means that the work towards a more accessible society should continue systematically and not be driven by individual claims.120 In some jurisdictions, the concept of ‘anticipatory accommodations or adjustments’ is used to capture this obligation to remove foreseeable general barriers to inclusion.121 In addition, it is recognized that the transition towards inclusive societies will take time. As the Committee states, accessibility is achieved through ‘gradual implementation’.122 Reasonable accommodations can take many forms. As the jurisprudence of the CRPD Committee illustrates it includes workplace-related accommodations (adaptions of computer systems),123 provision of sign language interpretation,124 and installation of audio systems at tram stops to communicate real-time information on the direction of the trams, their arrival and departure times, and disruptions of services.125 It also covers adjustments of local policies (concerning building permits),126 and modifications of health care settings so that women with disabilities can undergo mammogram,127 The intricate question is often to determine whether such accommodations and adjustments are reasonable under the circumstances at hand. The term ‘reasonable’ can be taken to mean that the accommodation should not confer undue costs on the employer. It can also be taken to imply that it must be effective and enable the individual to enjoy or exercise a certain right. And it can be interpreted to both limit the duty-bearers’ obligations and ensure
115 Çam v Turkey, App No 51500/08 (23 February 2016) paras 65 and 67. It had been a long and winding road for the Court to incorporate the concept of reasonable accommodation in its jurisprudence. For an overview of previous case-law, see Lawson, ‘A Catalyst for Cohesion’ (n 93) 94–104. 116 117 Art 4(f ) and (g) CRPD. Art 9(1) CRPD. 118 119 CRPD, ‘General Comment No 2’ (n 38) para 26. Art 5(3) CRPD. 120 See ‘General Comment No 2’ (n 38) paras 14, 25, and 27. 121 See eg Americans with Disabilities Act (1990), Title III on public accommodations. For a discussion on the concept in relation to the CRPD, see Maria Ventegodt Liisberg, ‘Accessibility of Services and Discrimination: Concentricity, Consequence, and the Concept of Anticipatory Reasonable Adjustment’ (2015) 15 IJDL 123. 122 ‘General Comment No 2’ (n 38) para 24. 123 CRPD Committee, Marie-Louise Jungelin v Sweden, Communication No 5/2011 (2 October 2014). 124 Beasley v Australia and Lockrey v Australia (n 36). 125 CRPD Committee, F v Austria Communication No 21/2014 (21 August 2015). 126 127 H M v Sweden (n 85). CRPD Committee, ‘General Comment No 3’ (n 61) para 17(d).
nilsson
80
Definitions
effective accommodations from the perspective of the individual rights-holder.128 In the following subsections, we discuss this question in more detail.
6.1 ‘necessary and appropriate’ The concept of ‘reasonable accommodation’ seeks to balance the interests of social inclusion and participation with the financial and autonomy-related interests of the of the employer, education provider or other actor who bears the duty to accommodate. On one side of the balance we have the interest of the individual concerned to carry out a certain job assignment, access a service, cast a vote or similar. To this we can add the interest of society at large to ensure inclusion and participation of persons with disabilities. On the other side of the balance, we have the duty bearers’ interests of productivity, of efficient spending of resources, and of control over their enterprise.129 The term ‘necessary’ signifies that the modification should correspond to a real need and the term ‘appropriate’ connotes that it ought to be suitable under the circumstances at hand. It must, for example, be possible or feasible from a legal and a practical perspective.130 An appropriate accommodation cannot be impractical or illegal. This marks the outer limits of the duty. The term ‘appropriate’, however, also implies that the accommodation must be effective. It must serve its aim and de facto facilitate enjoyment of one or several entitlements under human rights law. The CRPD Committee affirmed this point in a case concerning provision of Auslan131 interpretation to enable jury duty. In defence of its failure to ensure such interpretation, the responding state held that it did accommodate many people with disabilities who were summoned for jury duty. For example, it provided hearing loops and infrared technology. The Committee noted that such accommodations would not enable the claimant to perform jury duty and therefore could not justify failure to accommodate the needs of the claimant in this case.132 This concurs with how the concept was depicted during the negotiation process.133
6.2 ‘not imposing a disproportionate or undue burden’ The duty to make reasonable accommodations ceases at the point where the adjustment required constitutes a ‘disproportionate or undue burden’. As discussed in the previous section, the terms ‘necessary’ and ‘appropriate’ give certain guidance as to how far the duty to accommodate stretches. The accommodating measures must be legal and feasible, they should correspond to a real need and be effective towards their end(s). The notion of 128 cf Lisa Waddington, ‘Reasonable Accommodation’ in Dagmar Schiek, Lisa Waddington, and Mark Bell (eds), Cases, Materials and Text on National, Supranational and International Non-discrimination Law (Hart 2007) 635, 669–70. 129 For a thoughtful discussion on how the weight of these interests can be assessed and balanced in economic terms, see Michael Ashley Stein, ‘The Law and Economics of Disability Accommodations’ (2003) 53 Duke LJ 79. 130 OHCHR, ‘Equality and Non-discrimination under Article 5 of the Convention on the Rights of Persons with Disabilities’ UN Doc A/HRC/34/26 (9 December 2016) paras 37–38. 131 Australian sign language. 132 Beasley v Australia (n 36) paras 4.1 and 8.5; see also Jungelin v Sweden (n 123) Joint dissenting opinion of Committee members Carlos Rios Espinosa, Theresia Degener, Munthian Buntan, Silvia Judith Quan-Chang, and Maria Soledad Cisternas Reyes, para 4. 133 See eg Compilation of Proposed Revisions, Third Session (n 14) fn 27, and Daily Summaries 3 September 2004 (n 19); see recorded statements by Australia, Costa Rica, Israel, the Netherlands (on behalf of the EU), New Zealand, the United States, and Thailand.
nilsson
Article 2
81
disproportionate and undue burden duty-bearers adds that such measures must be proportionate in view of their costs and benefits, non-pecuniary costs and benefits included. As described above, the precise formulation of this limitation was discussed at length during the negotiations of the treaty. Though the phrases ‘disproportionate burden’ and ‘undue hardship’ were discussed as alternatives during the negotiations, they appear as additives in the final text, suggesting that duty-bearers can lawfully refuse to accommodate in situations where it would impose either a disproportionate or an undue burden.134 The CRPD Committee has not been entirely clear on what this qualification of the duty to accommodate means. The Committee’s reasoning on the merits in individual cases, however, supports the conclusion that the phrase ‘disproportionate or undue burden’ is essentially a requirement of proportionality taking all relevant circumstances into account.135 It has, however, been less specific about what constitutes relevant factors. The financial costs imposed on the duty-bearer are certainly relevant, as is the value generated by the accommodation for the individual concerned. It may, for example, be proportionate to require employers to spend significant resources on accommodations that enable their employees to carry out job assignments in an efficient manner, but disproportionate to require him or her to do the same if the accommodation does very little to improve the situation for the worker concerned.136 The costs must also be considered in relation to the duty-bearer’s ability to pay for them.137 Whilst small private companies cannot be required to spend large sums on accommodations, more can be required from public entities and large private enterprises. When reasoning about costs and benefits, it ought to be noted that accommodation measures can generate benefits for the duty- bearer and that not all accommodations result in net costs. For example, employers who accommodate for their employees with disabilities by installing ramps, ergonomic furniture, or computer soft wear may gain in increased productivity.138 Moreover, other employees (present and future) may benefit from these accommodations, and it may have a positive impact on their customer base.139 Good arguments exist to include other factors in the balance, such as third-party interests. Such interests can speak in favour as well as against a particular form of accommodation. In the case concerning jury service mentioned above, the respondent state argued that providing sign language interpretation during court proceedings would not only be costly, but would impact the duration of the trial. Moreover, if the interpretation service were to extend to the deliberations between the jury members and the judge, then this would breach the principle of confidentiality.140 On the other hand, accommodations can benefit more people than the individual for which it is primarily intended. As noted above, co-workers and future customers can benefit from employment-related accommodations. In addition, there is a gain reaped by society in having economically viable persons employed instead of dependent on social benefits.141 When considering the 134 Rosemary Kayess and Phillip French, ‘Out of Darkness into Light? Introducing the Convention on the Rights of Persons with Disabilities’ (2008) 8 HRLR 1, 20. 135 H M v Sweden (n 85) para 8.5 and Beasley v Australia (n 36) paras 8.4–5; see also CRPD Committee, ‘Draft General Comment on Equality and Non-discrimination’ (n 61) para 27 (d) and (e). 136 cf Stein, ‘The Law and Economics’ (n 129) 144–45 and 167–74. 137 Broderick, The Winding Road (n 82) 169. 138 139 Waddington, ‘Reasonable Accommodation’ (n 128) 727. ibid. 140 Beasley v Australia (n 36) paras 6.2 and 7.4. 141 For a discussion on how this gain can be assessed in economic terms, see Stein, ‘The Law and Economics’ (n 129) 141–44 and 174–77.
nilsson
82
Definitions
proportionality of a certain accommodation, states parties to the CRPD enjoy a margin of appreciation.142 States parties must, however, ensure that such an assessment is made in a ‘thorough and objective manner, covering all the pertinent elements, before reaching a conclusion’.143
7. ‘Universal design’ Universal design is a relatively new concept in human rights law.144 It originates from the field of architecture and signifies an approach to design that recognizes the diversity of human abilities and focuses on the usability of products and environments.145 These ideas have spread to other areas such as the field of education.146 The CRPD defines universal design as the ‘design of products, environments, programmes and services to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design’.147 This definition is almost a carbon copy of the definition of universal design provided by the Center for Universal Design (CUD) at North Carolina State University.148 The only difference is that the centre’s definition is limited to the design of products and environments. The CRPD extends the concept to cover also programmes and services.149 According to the CUD, universal design encompasses seven principles.150 These are: equitable use, flexibility in use, simple and intuitive use, perceptible information, tolerance for error, low physical effort, and size and space for approach and use. The principles are accompanied by a set of guidelines clarifying their meaning. The principle of equitable use, for example, implies that the design should be useful to people with diverse abilities. The composition of environments and products should be identical whenever possible; equivalent when not. It must avoid segregating or stigmatizing its users. Provisions for privacy, security, and safety should be equally available to all users. And the design should be appealing to all users.151 The guidelines further clarify that 143 Jungelin v Sweden (n 123) para 10.5. Beasley v Australia (n 36) para 8.4. The Council of Europe has recognized the value to universal design in terms of facilitating inclusion and participation in resolutions preceding the CRPD; see eg Resolution ResAP (2001) 1 of the Committee of Ministers on the Introduction of the Principles of Universal Design into the Curricula of All Occupations Working on the Built Environment (15 February 2001). 145 Edward Steinfeld and Jordana L Maisel, Universal Design: Creating Inclusive Environments (John Wiley & Sons 2012) 15. Within the design community there are other concepts and approaches with a similar focus on removing barriers and creating products and environments that are accessible and usable for a diverse population, such as ‘inclusive design’ and ‘Design for All’ which have had more impact in the European context; ibid 28–29. 146 See eg Sheryl Burgstahler, ‘Universal Design: Implications for Computing Education’ (2011) 11 ACM Trans Comput Educ, article 19. 147 Art 2 CRPD. 148 cf The Center for Universal Design ABOUT UD, available at: (accessed 27 October 2017). The definition was proposed by the Chairman of the Ad Hoc Committee in a letter to the members of the Committee before the seventh session. The same letter informs us of the origin of the definition. ‘Letter dated 7 October 2005 from the Chairman to all members of the Committee’ UN Doc A/AC265/2006/1 (14 October 2005) para 20. 149 Canada noted at the seventh session of the Ad Hoc Committee that ‘its proposal to add “programmes and services” to the definition of universal design would strengthen the definition and bring it into greater consistency with the reference in Art 4.1(f )(i)’; Daily Summaries 31 January 2006 (n 22). 150 Bettye Rose Connell, Mike Jones, Ron Mace, Jim Mueller, Abir Mullick, Elaine Ostroff, Jon Sanford, Ed Steinfeld, Molly Story, and Gregg Vanderheiden, ‘The Principles of Universal Design’ (1997) NCSU, Center for Universal Design. 151 ibid principle 1. 142 144
nilsson
Article 2
83
universal design must accommodate a wide range of abilities and preferences, it should be easy to understand regardless of the user’s experience, knowledge, and language skills, and it should communicate information effectively to the user regardless of their sensory abilities.152 The commonalities between the principles underpinning universal design and the general principles of the CRPD are quite obvious. Both set of principles acknowledge that people have different abilities but are equally entitled to access public goods and services and respect for dignity and personal preferences.153 Within the human rights context, universal design is viewed as a strategy or a tool to achieve inclusive and participatory societies with barrier-free environments and accessible goods and services.154 The principles and guidelines behind universal design can be applied to evaluate existing designs, to guide the process of new design projects and to educate designers, decision-makers, and consumers about the characteristics of accessible products and inclusive environments.155 Experience has shown that adherence to these principles from the very beginning of design projects can be cost-efficient. For example, making a building accessible from the outset typically adds relatively little to the total costs of the construction. The costs of subsequent adaptations to remove built-in barriers can, however, be significant.156 Thus, the more a state party invests in creating an accessible society, the less barriers will exist that necessitate individual accommodation, and vice versa.157 This does not mean that the application of universal design will automatically eliminate the need for individual aids and reasonable accommodation. Given the variety of impairments and ways in which access to goods and services may be hindered, and the difficulties of finding solutions that fit everyone, it is reasonable to expect that the need for individual accommodations will decrease rather than disappear. Article 2 clarifies that the use of universal design by no means replaces states parties’ duty to undertake reasonable accommodation.158
ibid principles 2, 3, and 4. Art 3 CRPD; all principles in Art 3 speak to this value base, but see in particular paras (a), (d)–(e), and (h). 154 CRPD Committee, ‘General Comment No 2’ (n 38) para 15. For the European context, see also Recommendation CM/Rec (2009) 8 of the Committee of Ministers to Member States on Achieving Full Participation Through Universal Design (1 October 2009). 155 Connell et al, ‘The Principles’ (n 150) see the introduction. 156 CRPD Committee, ‘General Comment No 2’ (n 38) para 15. Hence universal design is primarily relevant for states when implementing their ex ante accessibility obligations under articles 4 and 9. 157 Lawson has described the relationship between reasonable accommodation and accessibility obligations as ‘strong and mutually reinforcing’. Anna Lawson, ‘Reasonable Accommodation and Accessibility Obligations: Towards a More Unified European Approach?’ (2010) 11 Eur Anti-Disc L Rev 11, 21. 158 The second sentence of the definition of ‘universal design’ states that such design ‘shall not exclude assistive devices for particular groups of persons with disabilities where this is needed’. 152 153
nilsson
Article 3 General Principles The principles of the present Convention shall be: a. Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons; b. Non-discrimination; c. Full and effective participation and inclusion in society;
d. Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity; e. Equality of opportunity; f. Accessibility; g. Equality between men and women; h. Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.
1. Introduction 2. Background and Travaux Préparatoires 3. Paragraph (a) 3.1 ‘Respect for inherent dignity’ 3.2 ‘Individual autonomy’ 3.3 ‘Independence of persons’ 4. Paragraph (b)—‘Non-discrimination’ 5. Paragraph (c)—Full and Effective Participation and Inclusion in Society 6. Paragraph (d)—Respect for Difference and Acceptance of Persons with Disabilities as Part of Human Diversity and Humanity 7. Paragraph (e)—Equality of Opportunity 8. Paragraph (f)—Accessibility 9. Paragraph (g)—Equality between Men and Women 10. Paragraph (h)—Respect for the Evolving Capacities of Children with Disabilities and Respect for the Right of Children with Disabilities to Preserve their Identities
84 86 90 90 92 94 95 97 99 100 102 103
104
1. Introduction As an international human rights treaty, the Convention on the Rights of Persons with Disabilities (CRPD)1 is peculiar compared to other core United Nations (UN) international conventions.2 In part, its peculiarity finds expression in article 3, which lays UNGA Res 61/106 (13 December 2006). As it stands, there are nine core international human rights treaties, the CRPD being the latest. For a list of the nine core international human rights instruments, see the UN Human Rights Office of the High Commissioner, available at: . 1 2
arduin
Article 3
85
down the General Principles that should guide states parties when enforcing the purpose of the Convention3 and implementing its provisions. Whilst the establishment of general principles is relatively common in international treaty law, the novelty of the CRPD is that it enshrines these principles in a stand-alone article. Prior to the CRPD, general principles were inferred from core articles of a treaty4 or from preambles.5 In this sense, the introduction of a stand-alone article on General Principles departs from the architecture of previous international human rights treaties, in particular the Convention on the Rights of the Child (CRC).6 The CRC and the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW) have both been influential in the design of the CPRD.7 Not only does article 3 emulate a practice that is prevalent in UN environmental conventions,8 it also represents an innovative feature of the architecture of the UN Convention.9
2. Background and Travaux Préparatoires The discussion relating to the inclusion of an article dedicated to articulating the general principles underlying the Convention began at the early stage of the drafting process. During the first session of the Ad Hoc Committee, Mexico submitted a working paper to the effect that principles would not be explicitly mentioned in the Convention, but
Art 1 CRPD. eg in ‘General Comment 5 on General measures of implementation of the Convention on the Rights of the Child’ (Arts 4, 42, and 44(6)) UN Doc CRC/GC/2003/5 (27 November 2003) the Committee on the Rights of the Child infers four general principles from Arts 2, 3(1), 6, and 12 CRC that should guide states parties in implementing the ‘whole Convention’. The first principle identified by the Committee is the ‘non- discrimination principle of equal access to rights’, which should not be interpreted as ‘identical treatment’ (para 12). Second, the Committee infers from Art 3(1) the principle of the best interests of the child, which shall be ‘a primary consideration in all actions concerning children’ (ibid). Third, it identifies the optimal development principle for all children, understood broadly as referring to the ‘child’s physical, mental, spiritual, moral, psychological and social development’ (ibid 5). Fourth, the Committee highlights the right’s of the child to express his/her views freely as the last general principle that states parties shall consider when adopting measures implementing the Convention (ibid 5). 5 For instance, the preambles to the ICCPR and ICESCR refer to the principles of ‘dignity and equality inherent in all human beings’ affirmed in the Charter of the UN, whilst the preamble to the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW) affirms the ‘principle of the inadmissibility of discrimination’. 6 UNGA Res 44/25 (20 November 1989). 7 As pointed out by Stein and Lord, the architecture of the CRC has been influential in the design of the CRPD. For further analysis, see Michael Ashley Stein and Janet Lord, ‘Future Prospects for the UN Convention on the Rights of Persons with Disabilities’ in Odny M Arnardóttir and Gerard Quinn (eds), The UN Convention on the Rights of Persons With Disabilities: European and Scandinavian Perspectives (Brill 2009) 7, 23 (who note that the design of the Convention is modelled on the CRC, in particular as it embodies both civil and political rights and economic, social, and cultural rights). For further analysis on the holistic nature of the Convention, see Michael Ashley Stein, ‘Disability Human Rights’ (2007) 95 California Law Review 75, 94–98; Michael Ashley Stein and Penelope J S Stein, ‘Beyond Disability Civil Rights’ (2006–07) 58 Hastings Law Journal 1203, 1212–14. 8 For instance, principles are set out in Art 3 of The UN Framework Convention on Climate Change (1992), Art 3 of the UN Convention on Biological Diversity (1992), and Art 3 of the UN Convention to Combat Desertification (1994). 9 For a recent account, see Charles F Sabel and Jonathan Zeitlin, ‘Learning from Difference: The Architecture of Experimentalist Governance in the EU’ (2008) 14 European Law Journal 271; Charles F Sabel and Jonathan Zeitlin, ‘Experimentalist Governance’ in David Levi Faur (ed), The Oxford Handbook of Governance (OUP 2011) ch 12. 3 4
arduin
86
General Principles
would instead fall within the scope of the first article on the object of the Convention.10 Put another way, the initial Mexican proposal considered general principles as instrumental to the purpose of the Convention.11 During the preparation of the Draft Convention by the Working Group,12 two issues arose: the first related to the structure and placement of an article on general principles; the second concerned the content of the principles to be included. With respect to article placement, three approaches were debated. First, the European Union (EU) suggested a stand-alone article on general principles that would immediately follow the article on the object of the Convention.13 Second, several delegations, including Venezuela,14 India,15 the African Regional Workshop,16 the Commonwealth and Asia Pacific Region Workshop,17 and China,18 strengthened the initial Mexican approach, according to which general principles should not be explicitly included in an article, but should instead fall within the scope of the article on the object of the Convention.19 Third, Japan,20 supported by New Zealand,21 and in compliance with the position adopted by the Chair of the Ad Hoc Committee,22 recommended a single article that would combine the objectives of the Convention with the underlying principles.23 With respect to the principles to be included, various proposals were similarly discussed. The EU was of the view that the principles of ‘non-discrimination, equality of opportunity, autonomy, participation and inclusion’ should represent the ‘fundamental principles’ of the Convention.24 Japan proposed a variant of the principle of participation and inclusion in the form of ‘normalisation’, aimed at ‘providing the conditions and environments under which persons with disabilities can live as ordinary citizens in communities together with those without disabilities’.25 The African and Commonwealth Workshops referred only to the principles of non- discrimination and equality of 10 ‘Working Paper by Mexico’, UN Doc A/AC.265/WP1 (29 July–9 August 2002), available at: . 11 This is significant as it was not known at that time that there would be a Convention. I am grateful to Michael Ashley Stein for adding this comment. 12 ‘Ad Hoc Committee on a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities’, UN Doc A/58/118 (3 July 2003). 13 Art 2 of the EU proposal, available at: . 14 In particular, Art 1 referred to the concepts of non-discrimination, participation, and equality of opportunity; UN Doc A/AC265/2003/WP1 (16–27 June 2003), available at: . 15 Art 1 of India’s proposal, available at: . accessed April 2017. 16 Para 22, available at: . 17 Para 15, available at: . 18 Art 1 of China’s proposal, available at: . 19 See below. Draft Art 1 referred to the concepts of non-discrimination, participation, and equality of opportunity, available at: . 20 Art 2(1) of Japan’s Proposal, available at: . 21 Art 22 of New Zealand’s Proposal, available at: . 22 Art 1 of the Chair’s Draft Elements of a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities (December 2003), available at: . 23 24 Art 2(1) of Japan’s Proposal (n 20). Art 2 of the EU proposal (n 13). 25 Art 2(1) of Japan’s Proposal (n 20).
arduin
Article 3
87
opportunity.26 The European Disability Forum suggested the incorporation of the principles of ‘integrity, liberty, social justice, self-determination and self-representation’ to the list of principles to be embodied in the Convention,27 whilst Inclusion International put forward the principles of autonomy, diversity, full citizenship, and social inclusion as key human rights principles.28 Finally, the Chairman of the Ad Hoc Committee suggested the following four principles: a. the principles of autonomy and self-determination of persons with disabilities to lead full and independent lives; b. the principle of full inclusion of persons with disabilities as equal citizens and participants in all aspects of life; c. the principle of diversity and recognition of the right to be different; and d. the principle of equality of women and men, girls and boys.29
In light of these proposals, the Working Group drafted article 2 of the Convention. One will note that the EU was largely influential in the drafting of this article. First, the Working Group adopted the position of the EU with respect to the design of the article; it suggested a stand-alone article on general principles that would immediately follow the purpose of the Convention. Second, the Working Group adopted the EU’s proposal relating to the four principles, to which it added a fifth principle, that of ‘respect for difference and acceptance of disability as part of human diversity and humanity’. Accordingly, draft article 2 of the Convention read as follows: The fundamental principles of this Convention shall be: a. dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons; b. non-discrimination; c. full inclusion of persons with disabilities as equal citizens and participants in all aspects of life; d. respect for difference and acceptance of disability as part of human diversity and humanity; e. equality of opportunity.30
Subsequent to this draft text, it became apparent that the purpose of articulating general principles at the outset of the Convention was intended to help the interpretation and implementation of the Convention.31 During the third session of the Ad Hoc Committee, a general consensus emerged with respect to the five principles suggested by the Working Group.32 Several delegations 26 (nn 16 and 17)—the African Workshop emphasized the concept of equality as being the common thread in the Convention (n 16). 27 EDF’s proposal, available at: . 28 Art 3, available at: . 29 Art 1 of the Chair’s Draft Elements of a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities (n 22). 30 Ad Hoc Committee, Working Group to draft a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, ‘Report to the Ad Hoc Committee’ Annex I, (16 January 2004), available at: . 31 Comments made by the Landmine Survivors Network, available at: . 32 Art 2 of the Draft Text in Annex II of Report of the third session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, available at: .
arduin
88
General Principles
proposed to incorporate additional principles.33 In particular, some governments took the position that reference should be made to ‘international cooperation’,34 ‘equality between men and women’,35 ‘affirmative action to correct disadvantage occasioned by disability’,36 and ‘accessibility and universal design’.37 In addition, India drew particular attention to the situation of persons with severe, intellectual, and multiple disabilities and to the consideration that the social model of disability should be explicitly referred to instead of the medical model.38 Interestingly, the EU, supported by India, Mexico, and Thailand, suggested to incorporate a new paragraph, based on article 4(2) CRC, which would focus on the progressive realization of economic, social, and cultural rights.39 As pointed out by Ireland, representing the EU during the third session, the purpose of this second paragraph was to emphasize that whilst parts of the Convention would be implemented progressively much of the ‘Convention should not be progressive, for example, non-discrimination’.40 At a later stage, it was decided that this paragraph would be better suited in respect of the provision dealing with general obligations.41 Few changes were made during the fourth session of the Ad Hoc Committee.42 In light of the numerous principles suggested during the third session, the Netherlands, representing the EU, recommended a short article on general principles, instead of a long enumeration of concepts that did not represent principles.43 In addition, at the request of Japan and Mexico, as supported by China, it was noted that general principles should be binding, as opposed to merely guiding; they were to ‘guide the interpretation of the
33 For a compilation of the proposals to amend the draft text, see Compilation of proposals for a Comprehensive and Integral Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities (A/AC265/2003/CRP13 and Add 1), available at: , and ‘Daily summary of discussions related to Article 2 General Principles’, available at: . 34 This proposal was supported by Mali, Sudan, Eritrea, and Jordan. Thailand suggested a more specific principle in the form of ‘disability inclusive international cooperation’; Compilation (n 33). 35 This principle was suggested by Canada, Mexico, Norway, and Costa Rica, who also suggested an emphasis on ‘personal development in and enjoyment of all stages of life’. Compilation (n 33). Interestingly, the EU was opposed to incorporate this principle into Art 2 and suggested placing it instead in the preamble. Daily summary (n 33). This view changed, however, during the fourth session of the Ad Hoc Committee. See ‘Daily summary of discussions related to Article 2’, Fourth Session of the Ad Hoc Committee, available at: . 36 Kenya was the only delegation supporting this amendment. Compilation (n 33). 37 South Africa and Thailand proposed to include these two principles in Artart 2, although they were already mentioned in Draft Art 19; Japan also suggested a similar principle of ‘a barrier-free environment’. Compilation (n 33). 38 In the final draft of the Convention, article 1 adopted the interactionist approach to disability rather than a social model perspective. For further analysis on the differences between the interactionist approach to disability and the social perspective, see Dimitris Anastasiou and James M Kauffman, ‘The Social Model of Disability: Dichotomy between Impairment and Disability’ (2013) 38 Journal of Medicine and Philosophy 441; Tom Shakespeare (ed), Disability Rights and Wrongs (Routledge 2006). 39 ‘With regard to economic, social and cultural rights, states parties shall undertake such measures to the maximum extent of their available resources and, where needed, within the framework of international cooperation.’ Compilation (n 33). Interestingly, Sierra Leone, supported by Sudan and Mexico, was of the view that this latter paragraph should be moved to Art 4 on obligations, emphasizing that ‘[p]rinciples are different from obligations’. Daily summary (n 33). 40 41 Daily summary (n 33). ibid; see also Fourth Session of the Ad Hoc Committee (n 35). 42 See ‘Daily summary of discussions related to Article 2’, Fourth Session of the Ad Hoc Committee (n 35). 43 This observation was also supported by New Zealand (n 35).
arduin
Article 3
89
convention in accordance with the Vienna Convention on the Law of Treaties’.44 Finally, Sierra Leone drew particular attention to the need to interpret the ‘convention as a whole to ensure that the principles [were] reflected in it’. From this observation, it became apparent that the principles listed in draft article 2 would be intertwined with substantive provisions of the Convention.45 The final draft of the article was put forward during the seventh session of the Ad Hoc Committee. Two principal changes were made. First, the article placement was modified; draft article 2 was moved after the provision on definitions, adopting the model of environmental treaties.46 Second, the content of the article was amended. The new draft added three principles to the previous five proposed by the Working Group, namely ‘accessibility’, ‘equality between men and women’, and ‘respect for evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities’.47 The first two additional principles, ‘accessibility’ and ‘equality between men and women’, had already been suggested by several delegations during the third and fourth sessions of the Ad Hoc Committee.48 In this sense, they reflected a general consensus that emerged during the negotiation on the drafting of article 3. The third principle, ‘respect for evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities’, constituted, however, an innovative addition suggested by the International Disability Caucus during the seventh session.49 As discussed further below, this principle has clear connections with article 7 CRPD on children with disabilities. Most of the principles incorporated in the final text of article 3 were already affirmed in other international human rights instruments. As we shall see, the Convention on the Rights of the Child, the UN Standards rules on Equalization of Opportunities for Persons with Disabilities,50 and the core UN international treaties have all been influential in the identification of general principles. The novelty of the CRPD concerns the fact that it compiles existing principles in the context of disability in a stand-alone article, whilst also highlighting them in its preamble.
44 In particular, Art 31 of the Convention (23 May 1969) 1155 UN Treaty Series 331, which establishes the general rule of interpretation. 45 For instance, Sierra Leone noted that ‘[i]n Article 5, there is a reference to respect and inclusion, which is related to dignity. Article 7 references equality and non-discrimination, Article 9 references equality under the law, Article 10 references liberty and security of the person, Article 14 references respect for difference, Article 15 references independence and autonomy, or self determination, Article 18 references participation, Articles 19 and 20 references accessibility and personal mobility. These are all principles that should be reflected in Article 2. Gender equality, if included in Article 2, must be reflected in the convention. International cooperation should be in Article 2 because consensus is emerging for its coverage in the convention, especially in implementation. The Mexican proposal in 2(a) referencing the universality, indivisibility and interdependence of all human rights, should be the first general principle. The other principles to be included are those that are reflected in the convention as a whole.’ (n 35). 46 For instance, Art 3 of the UN Framework Convention on Climate Change and Art 3 of the UN Convention on Biological Diversity (n 8). 47 Draft Art 3, Working Text of the International Convention on the Rights of Persons with Disabilities, available at: . 48 See (nn 33 and 35). 49 See Chairman’s Text as Amended by the International Disability Caucus (1/17/2006) available at: . This principle is further discussed below. 50 UNGA Res 48/96 (20 December 1993).
arduin
90
General Principles
3. Paragraph (a) 3.1 ‘Respect for inherent dignity’ The concept of dignity has a long pedigree in international human rights law. Since the Universal Declaration of Human Rights,51 the concept of ‘dignity’ or ‘human dignity’ has played a central role in thinking about law and human rights.52 In 1986, the UN General Assembly provided, in its guidelines for new human rights instruments, that such instruments should be ‘of fundamental character and derive from the inherent dignity and worth of the human person’.53 Reference to dignity is commonplace in the core UN human rights architecture; it has been affirmed in the preambles to each of the UN Conventions constituting the International Bill of Human Rights as a founding principle of human rights.54 The concept of ‘inherent dignity’ is often intertwined with other human rights concepts. For instance, it is associated with the concept of liberty as it finds expression in article 10 ICCPR,55 article 17 of the International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families56 and article 37(c) CRC.57 It is also associated with the right to education, as expressed in article 13 ICESCR58 and article 28 CRC.59 At the regional level, the European Convention on Human Rights (ECHR) does not explicitly refer to the concept of human dignity.60 Its importance has been, however, recognized by the European Court of Human Rights (ECtHR) in two cases. First, in Pretty v United Kingdom, the Court affirmed that human dignity is ‘the very essence of the Convention’;61 second, in Refah Partisi and others v Turkey, the Court held that the Convention forms an ‘integrated system for the protection of human dignity’.62
51 UNGA Res 217A (III), UN Doc A/810 (10 December 1948) 71. The preamble to the Declaration begins with the ‘recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family’. 52 See, generally, David Kretzmer and Eckart Klein (eds), The Concept of Human Dignity in Human Rights Discourse (Brill 2002); Michael Rosen, Dignity: Its History and Meaning (HUP 2012). For a criticism of the concept of dignity, see Christopher McCrudden, ‘Human Dignity and Judicial Interpretation of Human Rights’ (2008) 19 European Journal of International Law 655. For an account of dignity as an expressive norm, see Tarunabh Khaitan, ‘Dignity as an Expressive Norm: Neither Vacuous Nor a Panacea’ (2012) 32 Oxford Journal of Legal Studies 1. 53 UNGA Res 41/120 (4 December 1986) quoted in Andrew Clapham (ed), Human Rights Obligations of Non-State Actors (OUP 2006) 538; see also McCrudden (n 52) 669. 54 The concept of dignity is referred to in the preambles of all of the nine core UN human rights treaties. 55 Art 10 CCPR provides that: ‘[a]ll persons deprived of their liberty shall be treated with humanity and with respect for the inherent dignity of the human person.’. 56 UNGA Res 45/158 (18 December 1990), art 17. 57 According to art 37(c) CRC, ‘[e]very child deprived of liberty shall be treated with humanity and respect for the inherent dignity of the human person, [ . . . ]’. 58 UNGA Res 2200 A (XXI) (16 December 1966). Art 13(1) provides ‘[ . . . ] education shall be directed to the full development of the human personality and the sense of its dignity, and shall strengthen the respect for human rights and fundamental freedoms.[ . . . ]’. 59 Art 28(2) CRC. 60 In subsequent Council of Europe conventions, the concept has been included, notably in the Revised European Social Charter (ETS No 163 (1996), preamble, art 26) and in the Convention on Human Rights and Biomedicine (CETS No 164 (1997), preamble, Art 1). 61 ECHR, 29 April 2002, Application no 2346/02, para 65. 62 ECHR, 31 July 2001, Application no 41340/98, para 43.
arduin
Article 3
91
Interestingly, within the EU constitutional framework, dignity is also a fundamental feature of the EU Charter of Fundamental Rights.63 Within the CRPD, the concept of dignity has a special place. It is generally referred to in paragraphs (a), (h) (discrimination),64 and (y)65 of the preamble, and in articles 1 (Purpose)66 and 8 (Awareness-raising) of the Convention.67 More specifically, it is associated with substantive provisions, such as freedom from exploitation, violence, and abuse (article 16),68 the right to education (article 24),69 and the right to health (article 25).70 The principle relating to respect for dignity was first suggested by Mexico in its working paper in 2002.71 At this stage, the principle was placed in the preamble of the Convention, reflecting the common architecture of the core UN international human rights framework. Paragraph (p) of the preamble to the Mexican draft read as follows: Motivated by the principles of dignity and equality intrinsic to human beings and the values of dignity k[ . . . ].72 During the second session, the Danish Human Rights Institute provided a ‘Discussion Paper on Founding Principles of a Convention on Rights of Persons with Disabilities’,73 in which it highlighted the importance of the concept of human dignity as the ‘anchor norm of human rights’.74 Its importance was further debated during the third session, in which several delegations discussed the concept of dignity as included in draft article 2(a) prepared by the Working Group. Mexico, supported by South Africa,75 proposed to add the concept of ‘human dignity’ in paragraph (d) instead of the concept of humanity. Similarly, India proposed to include the concept of dignity when affirming the principle of participation in society. The Landmines Survivors Network suggested to refer to the concept of ‘inherent dignity’ in paragraph (a) instead of ‘dignity’ so as to be in compliance with the language used in other human rights conventions. Finally, National Human Rights Institutions (NHRIs) proposed adding in paragraph (a) ‘respect for human’ before the word ‘dignity’.76 They pointed out that the human rights model focuses on the 63 Whilst the preamble to the EU Charter recognizes that the Union is founded on the ‘universal values of human dignity, freedom, equality and solidarity’, article 1 of the Charter (2000/C 364/01), OJ (2000) C 364/ 1 is exclusively dedicated to the protection and respect of human dignity. In addition, the Court of Justice of the EU has confirmed that a fundamental right to human dignity is part of Union law (judgment of 9 October 2001 in Case C-377/98 Netherlands v European Parliament and Council [2001] ECR I-7079, 70–77). 64 65 See para (h) preamble. See para (y) preamble. 66 Art 1 provides that: ‘[t]he purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.’ This article is analysed in a previous chapter. 67 Art 8(a) refers to the measures to be adopted by member states in order to raise awareness and ‘foster respect for the rights and dignity of persons with disabilities’. 68 Art 16(4) relates to the environment in which recovery and reintegration should take place when persons with disabilities have been victim of abuse. 69 Art 24(1)(a) relates to the role of the education system in guaranteeing the ‘full development of human potential and sense of dignity and self-worth, [ . . . ]’. 70 Art 25(d) requires ‘health professionals to provide care of the same quality to persons with disabilities as to others, [ . . . ] by, inter alia, raising awareness of the human rights, dignity, [ . . . ] of persons with disabilities [ . . . ].’. 71 72 Working Paper by Mexico, UN Doc A/AC265/WP1 (n 10). ibid. 73 Statement available at: . 74 ibid. 75 One will note that the Constitution of the Republic of South Africa (18 December 1996) gives a central place to dignity, which is referred to in Arts 1, 7, 10, 35, 36, 39, 165, 181, 196, and Sch 2. 76 See ‘Daily summary of discussions related to Article 2 General Principles’, available at: .
arduin
92
General Principles
inherent value of human dignity, which is a ‘crucial concept with regard to human rights in general and in the context of people with disability specifically’.77 This latter proposal was welcomed by the South Africa Human Rights Commission and European Disability Forum (EDF) during the fourth session78 and reaffirmed during the seventh session.79 As observed by the International Disability Caucus (IDC) ‘one is already born with dignity’. Accordingly, it is a matter of ensuring that dignity is respected.80 It results that none of the rights laid down in the Convention may be used to harm the dignity of persons with disabilities. Despite its importance and ubiquity in human rights discourse, the use of ‘dignity’, ‘inherent dignity’, or ‘human dignity’ remains relative, ambiguous, and contested in academic and legal literature. As it stands, a basic minimum understanding of human dignity suggests that each human being possesses an intrinsic worth that should be respected and that some behaviours are inconsistent with respect for this intrinsic worth.81 Beyond this basic understanding, McCrudden points out that ‘[a]ll that is left of dignity . . . is the relatively empty shell [ . . . ], when the concept comes to be applied [ . . . ], [it] is culturally relative, deeply contingent on local politics and values, resulting in significantly diverging, even conflicting, conceptions.’82 The Committee on the Rights of Persons with Disabilities has yet to clarify its conceptions of dignity in the context of the CRPD. In particular, it will be interesting to see if the Committee establishes a distinction between dignity, human dignity, and inherent dignity as these concepts seem to appear interchangeably throughout the CRPD.
3.2 ‘Individual autonomy’ The introduction of the concept of individual autonomy as a general principle is another peculiarity of the CRPD. None of the core UN conventions, aside from the CRDP, refers directly to the principle of individual—or personal—autonomy in their preamble or core text. Similarly, the ECHR and the EU Charter of Fundamental Rights are both silent with respect to this concept. Whilst the European Court of Human Rights has observed that the principle of autonomy is a founding principle of human rights, it has not yet established that a right to personal autonomy or self-determination is contained in the Convention.83 During the second session of the Ad Hoc Committee, the Danish Human Rights Institute observed that individual autonomy is closely intertwined with the concept of freedom.84 It further noted that autonomy, as a general concept, embodies five specific rights, which are interrelated, namely: 77 See National Human Rights, Asia Pacific Forum, available at: at para 45. 78 See ‘Daily summary of discussions related to Article 2 General Principles’, available at: . 79 See compilations of comments, proposals, and amendments during the seventh session, available at: . 80 81 82 ibid. McCrudden (n 52) 723. ibid 698. 83 Pretty v United Kingdom (n 61) para 61; see also Keenan v United Kingdom (3 April 2001, Application no 27229/95) para 91. 84 See the Danish Human Rights Institute (n 73) which quotes Jacob Dahl Rendtorff and Peter Kemp, ‘Basic Ethical Principles in European Bioethics and Biolaw, Vol 1 Report to the European Commission of the BIOMED-II Project’ (Centre for Ethics and Law, Copenhagen, Institut Borja de Bioethica, Barcelona, 2000) 25–26.
arduin
Article 3
93
1 . right to personal development, to create ideas and goals for life; 2. right to privacy; 3. right to integrity, liberty and freedom from coercion; 4. right to inclusion in community life; and, 5. right to participate actively in political processes.85 Unlike the concept of autonomy, most of these rights are expressly referred to in the core UN human rights treaties. For instance, the right to privacy is guaranteed in the Universal Declaration of Human Rights (article 12), the ICCPR (article 17), the CRC (article 16), and the International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families (article 14). Similarly, the right to liberty and freedom from coercion is protected in the Universal Declaration of Human Rights (article 3), the ICCPR (articles 9, 10, and 12), the CRC (article 37(b)), and the International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families (articles 16 and 17). During the drafting process of article 3, the main debate related to whether the concept of autonomy should be replaced by the concept of self-determination. The Danish Human Rights Institute pointed out that, where autonomy is a principle underlying human rights law, the right to self-determination of people is a fundamental right that has been mostly used in the context of colonial countries, indigenous peoples, and national minorities.86 Although not defined expressly in the Convention, autonomy is understood as referring to the freedom of being in charge of one’s own life and of making one’s own choices, which is highlighted in the preamble as being of importance to persons with disabilities.87 Interestingly, the Office of the UN High Commissioner of Human Rights has pointed out that ‘respect for the individual autonomy of persons with disabilities means that persons with disabilities have, on an equal basis with others, reasonable life choices, are subject to minimum interference in their private life and can make their own decisions, with adequate support where required’.88 Whilst the concept of autonomy is intertwined with several provisions of the Convention,89 its apex finds expression in article 12, which recognizes the principle of legal capacity of persons with disabilities. In this context, it is not surprising that the first general Comment of the CRPD Committee concerned article 12 (equal recognition before the law).90 Although the Committee did not elaborate a definition of the meaning of autonomy, it provided some guidance as to how this concept should be interpreted. The Committee drew particular attention between, on the one hand, freedom from discrimination in the recognition of legal capacity and, on the other hand, autonomy and respect of the human dignity of the person.91 In this sense, the Committee observed that the freedom to make one’s own choice is closely intertwined with legal capacity, which is one right, amongst others, related to autonomy.92 86 87 Danish Human Rights Institute (n 73). ibid. Para (n) preamble. UN OHCHR, ‘Monitoring the Convention on the Rights of Persons with Disabilities: Guidance for Human Rights Monitors’ (UN 2010) 19. 89 eg reference is made in Art 16(4) (Freedom from exploitation) and Art 25(d) (Health). 90 Committee on the Rights of Persons with Disabilities, ‘General Comment No. 1—Article 12: Equal recognition before the law’, UN Doc CRPD/C/GC/1 (11 April 2014). 91 ibid para 33. 92 ibid para 29. For a detailed analysis of the right to autonomy in the context of the CRPD, see Frédéric Mégret, ‘The Disabilities Convention: Human Rights of Persons with Disabilities or Disability Rights?’ (2008) 30 Human Rights Quarterly 494, 510–14. 85 88
arduin
94
General Principles
With respect to intellectual disability, the principle of autonomy raises interesting challenges. As pointed out by Dimopoulos, some persons with intellectual disabilities have limited autonomy or no autonomy.93 In this context, a liberal approach to autonomy, which heeds autonomous moral agency and freedom to make one’s one choice, may prove inefficient. This begs the questions of how the CRPD Committee should interpret the principle in the context of intellectual disability and how the freedom of persons with intellectual disabilities should be fostered.94
3.3 ‘Independence of persons’ The right to independent living is another aspect of the principle of autonomy. The Danish Human Rights Institute observed that independence underlines the ‘right to live a life outside of institutions, where barriers for full social inclusion are removed and the necessary technical aids and personal assistance are provided’.95 It further noted that the right to independence is narrower than the overarching principle of autonomy. In particular, it does not serve as a bridge for civil and political rights and economic, social, and cultural rights.96 The right to independence is closely intertwined with several provisions of the Convention, such as accessibility (article 9), independent living and inclusion in society (article 19), personal mobility (article 20), parental autonomy (article 23(2)), and habilitation (article 26). The CRPD Committee has recently noted in relation to article 9 on accessibility that ‘[a]ccessibility is a precondition for persons with disabilities to live independently and participate fully and equally in society’.97 Similarly, writing in the context of article 12, the Committee has observed that article 19 is intended to ensure that persons with disabilities have the opportunity to live independently in the community and to make choices and to have control over their everyday lives, on an equal basis with others.98 In this sense, the right to independence is closely associated with the principle of participation in society, which is discussed below.99
4. Paragraph (b)—‘Non-discrimination’ The principle of non-discrimination is a well-established principle in international human rights treaties.100 As pointed out by the UN Human Rights Committee, it constitutes a
Andreas Dimopoulos, Issues in Human Rights Protection of Intellectually Disabled Persons (Routledge 2010). Dimopoulos provides a thorough analysis of how the concept of human dignity may be used as a means for fostering the autonomy of persons with intellectual disabilities, even though their autonomy is limited in liberal terms. Dimopoulos (n 93) ch 2. 95 Statement available at: (n 73). 96 ibid. 97 Committee on the Rights of Persons with Disabilities, ‘General Comment No 2—Article 9: Accessibility’ UN Doc CRPD/C/GC/2 (11 April 2014). 98 CRPD Committee (n 88) paras 44–45. It is expected that further clarification on the scope and meaning of article 19 will be provided in the General Comment 5, which is currently under draft. For further details, see chapter on article 19. 99 See under para (c), section 5 pp 97–99. 100 Provisions on non-discrimination are incorporated in all core international human rights treaties, including regional treaties, namely the ECHR (Art 14), the American Convention on Human Rights (Art 24), the African Charter on Human and People’s Rights (Art 2), and the EU Charter of Fundamental Rights (Art 21). 93 94
arduin
Article 3
95
‘basic and general principle relating to the protection of human rights’.101 Despite its international status, discrimination based on disability is not widely recognized in the core UN human rights treaties.102 The CRC is the first UN human rights treaty recognizing discrimination based on disability.103 The ICCPR and ICESCR, the CEDAW and the International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families do not list disability as a ground of discrimination.104 The same observation may be made with respect to article 14 of the ECHR, which excludes disability as a ground of discrimination, whereas the EU Charter of Fundamental Rights, which entered into force subsequent to the CRPD, does include disability as a ground of discrimination.105 Within the CRPD, the principle of non-discrimination is overarching. It is mentioned in paragraphs (h) and (p) of the preamble; it is defined in article 2; it is erected as a general principle in article 3; it constitutes a general obligation under article 4; it is enshrined in a stand-alone provision in article 5; and it is expressed in several substantive provisions relating to the home and family (article 23), education (article 24), health (article 25), and employment (article 27). Accordingly, the principle of non-discrimination is pivotal. It reflects the scope of the Convention, the purpose of which is not to create new rights, but to reaffirm existing human rights to the lived experience of persons with disabilities.106 The salience of this principle is two-fold. First, it bridges conceptually civil and political rights, on the one hand, and economic, social, and cultural rights, on the other hand.107 In this sense, the concept reflects a novel feature of the Convention, which goes beyond the traditional discriminatory model that was initially suggested by the EU during the drafting process, to also encompass substantive rights.108 Second, and in contrast to the other principles listed in article 3, the principle of non- discrimination is defined, albeit broadly, in article 2 CRPD. As it stands, discrimination refers to ‘any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment, or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including denial of reasonable accommodation’, which is defined as referring to ‘necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the 101 UN OHCHR, ‘CCPR General Comment No 18: Non-discrimination’ (UN 1989) para 1, available at: . 102 For further analysis, see Stein and Lord (n 7); Arnardóttir, ‘A Future of Multidimensional Disadvantage Equality?’ (n 7) 41. The EU Charter of Fundamental Rights also recognizes discrimination based on disability (Art 21). 103 104 Art 2(1) CRC. Art 2 ICESCR; Arts 2 and 26 ICCPR. 105 According to article 21(1) of the Charter, ‘[a]ny discrimination based on any ground such as sex, race, colour, ethnic or social origin, genetic features, language, religion or belief, political or any other opinion, membership of a national minority, property, birth, disability, age or sexual orientation shall be prohibited.’ (2012/C 326/02). 106 Art 1 CRPD; for further analysis see Mégret (n 92). 107 For further analysis see Gerard Quinn and Eilionóir Flynn, ‘Transatlantic Borrowings: The Past and Future of EU Non-Discrimination Law and Policy on the Ground of Disability’ (2012) 60 American Journal of Comparative Law 23, 26. 108 For a detailed analysis of the influence of the EU in the drafting process of the Convention see Gráinne de Búrca, ‘The EU in the Negotiation of the UN Disability Convention’ (2010) 35 European Law Review 174.
arduin
96
General Principles
enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms’.109 Whilst the concept is further discussed in other chapters within this volume, two aspects of this definition are noteworthy. First, the content of the principle is relatively broad to encompass both direct and indirect discrimination, even though no explicit reference to these concepts is made. Second, for the first time in an international human rights treaty, it includes denial of reasonable accommodation as part of the definition of discrimination.110 This inclusion was proposed by NHRIs during the third session of the Ad Hoc Committee111 and further discussed during the fourth session.112 In particular, it was observed that the concept of reasonable accommodation is an important addition to the principle of non-discrimination as it is particularly tailored to the situation of persons with disabilities. It is noteworthy that the concept of reasonable accommodation was already expressed in the UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities,113 the General Comment of the UN Committee on Economic, Cultural and Social Rights,114 and more specifically in the EU Directive 2000/78 on employment equality.115 In this respect, the CRPD brings to the fore a holistic approach to discrimination that is closely intertwined with the concept of equality and tailored to the situation of persons with disabilities.
5. Paragraph (c)—Full and Effective Participation and Inclusion in Society The principle of participation in society is a novel principle in international human rights treaty law. Like autonomy, this principle is not recognized per se in the core international treaties. 109 Art 2 CRPD; for further analysis on the provision of reasonable accommodation in the context of disability, see Michael Ashley Stein, ‘Same Struggle, Different Difference: ADA Accommodations as Antidiscrimination’ (2004) 153 University of Pennsylvania Law Review 579; Michael Ashley Stein, Anita Silvers, Bradley A Areheart, and Leslie P Francis, ‘Accommodating Every Body’ (2014) 81 The University of Chicago Law Review 689; Lisa Waddington and Mark Bell, ‘Exploring the Boundaries of Positive Action under EU Law: A Search for Conceptual Clarity’ (2011) 48 Common Market Law Review 1503; Lisa Waddington and Aart Hendriks, ‘The Expanding Concept of Employment Discrimination in Europe: From Direct and Indirect Discrimination to Reasonable Accommodation Discrimination’ (2002) 18 International Journal of Comparative Labour Law and Industrial Relations 403; Lisa Waddington, ‘Reassessing the Employment of People with Disabilities in Europe: From Quotas to Anti-Discrimination Laws’ (1996) 18 Comparative Labor Law Journal 62. 110 See de Búrca, ‘The EU in the Negotiations of the UN Disability Convention’ (n 108). For further details, see also the chapter on article 5. 111 Comments, proposals, and amendments submitted electronically during the third session, available at: . 112 See Daily summary, fourth session, available at: —New Zealand, Serbia Montenegro, the South Africa Human Rights Commission, and EDF were strong proponent for including a principle of reasonable accommodation. 113 COM (25 November 1999) 565; in particular, rule 7(2) provides that ‘States should also encourage employers to make reasonable adjustments to accommodate persons with disabilities.’. 114 CESCR Committee, ‘General Comment No. 5: Persons with Disabilities’, UN Doc E/1995/22 (9 December 1994) para 15. 115 In particular, Art 5 provides that: ‘In order to guarantee compliance with the principle of equal treatment in relation to persons with disabilities, reasonable accommodation shall be provided. This means that employers shall take appropriate measures, where needed in a particular case, to enable a person with a disability to have access to, participate in, or advance in employment, or to undergo training, unless such measures
arduin
Article 3
97
Traditionally, participation is linked to two types of rights and entitlements. First, it is associated with the right to political participation as expressed in the Universal Declaration of Human Rights,116 the ICCPR,117 and the ECHR.118 This right to political participation has also a direct bearing on freedoms of thought, expression, assembly, and association, which have a strong pedigree in international and regional human rights treaties.119 Second, participation is associated with the right to participate in cultural life, recreation, leisure, and sport, as provided in the Universal Declaration of Human Rights120 and the ICESCR.121 Whilst the CRPD recognizes both aspects of participation,122 it expands significantly the scope of the concept and affirms a general principle of full and effective participation in society. It is noteworthy that, where the affirmation of a general principle is novel, the importance of participation in the context of disability is not. The World Programme of Action Concerning Disabled Persons of 1982,123 the Standard Rules of 1993,124 the CRC,125 the Revised European Social Charter,126 and the EU Charter of Fundamental Rights,127 all guarantee and promote the participation of persons with disabilities in society.128 In this context, the CRPD reaffirms this principle in general terms, whilst tailoring it to the rights of persons with disabilities. The principle of participation is a quintessential feature of the design of the CRPD.129 Unlike previous international treaty negotiations, the drafting of the CRPD was novel. First, the process was transparent; second, it involved the participation of NGOs, international organizations, disability experts, and human rights institutions representing persons with disabilities.130 Furthermore, like the principle of non-discrimination, the principle of participation is ubiquitous within the Convention. It is included in the definition of disability,131 would impose a disproportionate burden on the employer. This burden shall not be disproportionate when it is sufficiently remedied by measures existing within the framework of the disability policy of the Member State concerned.’ Interestingly, de Búrca notes that the introduction of denial of reasonable accommodation is the result of strong advocacy from the Commission and, in this sense, reflects the influence of the EU in expanding further the definition of discrimination. See de Búrca, ‘The EU in the Negotiations of the UN Disability Convention’ (n 108) 193. 116 Art 21 provides both a right and an opportunity to ‘take part in the conduct of public affairs’ and ‘to vote and be elected’. 117 Art 25 recognizes the ‘right and the opportunity [ . . . ] to take part in the conduct of public affairs’, ‘to vote and be elected’, and to ‘have access to public service’ in the country in which one lives. 118 First Protocol to the European Convention of Human Rights, Art 3 (free elections). 119 eg freedom of expression is guaranteed in article 5(d) of the International Convention on the Elimination of All Forms of Racial Discrimination, article 19 ICCPR, article 13 CRC, article 13 of the International Convention on the Protection of the Rights of All Migrant Workers, article 21 CRPD, article 10 ECHR, and article 11 EU Charter of Fundamental Rights. 120 Art 27(1) provides that ‘[e]veryone has the right freely to participate in the cultural life of the community, to enjoy the arts and to share in scientific advancement and its benefits.’ 121 Art 15 recognizes the ‘right of everyone to take part in cultural life’. 122 eg political participation is guaranteed in article 29 (Participation in political and public life) and cultural participation is provided in article 30 (Participation in cultural life, recreation, leisure, and sport). 123 124 125 UNGA Res 37/52 (3 December 1982) para 1. Preamble. Art 23 CRC. 126 127 Council of Europe, ETS 163, 03.V.1996, Art15. Art 26 EU Charter. 128 One will also recall the slogan adopted by NGOs, ‘Nothing about us without us’, borrowed from James Charlton, Nothing About Us Without Us (UCP 1998). 129 For a thorough analysis of the active consultation with persons with disabilities and NGOs during the drafting process, see Tara Melish, ‘The UN Disability Convention: Historic Process, Strong Prospects, and Why the U.S. Should Ratify’ (2007) 14 Human Rights Brief 37, 43–47. 130 131 See Melish (n 129); Stein and Lord (n 7). Para (e) preamble; Art 1 CRPD.
arduin
98
General Principles
associated with the lived experience of persons with disabilities and with their continued social and societal disadvantages,132 it is elevated as an objective of the Convention,133 a general principle and a general obligation,134 and expressed in many of the substantive provisions of the CRPD.135 Finally, the participatory dimension is a notable feature of the monitoring process of the Convention136 and of the composition of the CRPD Committee.137 Whilst neither the Convention nor the Committee provides a definition of the meaning of participation, it is manifest that this principle is closely intertwined with the concepts of inclusion, equality, and respect for the inherent dignity of all in society. As pointed out by the Danish Human Rights Institute, ‘participation has positive connotations and ensures a modern and rights-based approach to the widespread marginalisation and isolation of persons with disabilities’.138 It evokes ‘a society where persons with disabilities play an active role as partners in all aspects of life and are entitled and enabled to live a life in mainstream settings’.139 In addition, the reference to the concept of inclusion highlights the paradigm shift from a medical model of disability to a human rights model.140 During the drafting process, some delegations suggested that the principle of full inclusion should take precedence over the principle of participation in draft article 2. For instance, during the third session of the Ad Hoc Committee, the Asia Pacific Forum suggested that participation was an aspect of inclusion and that ‘full inclusion’ required ‘social structures that ensure active participation’ of persons with disabilities. It also associated inclusion with the principles of equality and respect for the inherent dignity of all human beings.141 In contrast, the EU proposed to place greater emphasis on the principle of participation ahead of the principle of inclusion.142 This latter approach was further supported by Mexico and Costa Rica during the fourth session143 and adopted during the seventh session.144 As it stands, the essence of the relationship between the two principles is ambiguous. Some provisions place the concept of inclusion ahead of the principle of participation; this may be observed in the articles relating to independent and community living145 and habilitation.146 Other provisions refer to the principle of inclusion as being separate from the principle of participation; this is notably the case in relation to education147 and Para (k) preamble. The second objective relates to the promotion and protection of human rights and fundamental freedoms of persons with disabilities. See paras (m) and (y) preamble. 134 Art 4(3) CRPD obliges states parties to involve persons with disabilities in the development and implementation of legislation and policies to implement the Convention. 135 In particular, provisions relating to education (articles 24(1) and 24(3)), habilitation (article 26), political participation (article 29), cultural participation (article 30), and participation in international cooperation (article 32(1)). 136 137 138 139 Art 33(3) CRPD. Art 34(4) CRPD. See (n 73). ibid. 140 For further analysis on the paradigm shift, see Stein, ‘Disability Human Rights’ (n 7); Stein and Stein, ‘Beyond Disability Civil Rights’ (n 7); Sarah Arduin, ‘Implementing Disability Rights in Education In Ireland: An Impossible Task?’ (2013) 36 Dublin University Law Journal 93. 141 Daily summary, available at: , accessed April 2017. 142 Daily summary, available at: . 143 Daily summary, available at: . 144 Daily summary, available at: . 145 146 147 Art 19 CRPD. Art 26(1) CRPD. Art 24(1) CRPD. 132 133
arduin
Article 3
99
employment.148 Finally, some provisions exclusively refer to the principle of participation without referring to the concept of inclusion; this is particularly manifest in paragraphs (e), (k), (m), and (y) of the preamble, article 1 (purpose) and article 9 (accessibility) of the Convention. In this context, further clarification is needed in order to determine the extent to which the concept of inclusion functions as an instrument for guaranteeing full and effective participation of persons with disabilities in specific aspects of their life.149 With respect to the meaning of ‘full and effective’, the CRPD Committee has not elaborated on the meaning of the provision yet. It may be argued that the expression highlights the conceptual difference between the concept of integration, previously referred to,150 and the concept of inclusion. Although a thorough analysis of these two concepts is outside the scope of this chapter, suffice it to say that, unlike inclusion, integration relates to an assimilationist model that emphasizes a formal approach to participation and places the burden on persons with disabilities to adapt to society. As per the CRPD Committee writing in the context of the fourth General Comment on Inclusive Education, integration is a ‘process of placing persons with disabilities in existing mainstream [ . . . ] institutions, as long as the former can adjust to the standardized requirements of such institutions’.151
6. Paragraph (d)—Respect for Difference and Acceptance of Persons with Disabilities as Part of Human Diversity and Humanity The principle of respect for difference and acceptance of disability is particularly tailored to the situation of persons with disabilities. The principle has been welcomed as reflecting the paradigm shift of the Convention. As discussed further in other chapters of this volume, the human rights model of disability emphasizes diversity, pluralism, and human difference as part of humanity.152 Under this approach, persons with disabilities are recognized as actors and rights holders. In addition, the onus of proof shifts to society to adapt and be accessible to all on an equal basis. In this sense, the principle of difference is closely intertwined with the concept of disability as defined in article 1 of the Convention. The architecture of the Convention reflects the importance of the principle of respect for difference and acceptance. The principle is referred to in paragraph (i) of the preamble and in article 8, which requires states parties to raise awareness regarding persons with disabilities and to ‘foster respect’ for their rights and dignity.153 As will be discussed below, 148 Art 27(1) CRPD. Although article 27 does not explicitly refer to the principle of participation, it may be inferred from article 27(1)(e), (f ), (g), (h), (j), and (k). 149 This observation was made during the third session following the Danish Human Rights Institute report (n 73) in which the Institute noted that the principle of inclusion does not have the same broad application on all aspects of life in the community as the principle of participation. 150 UNESCO, ‘The Salamanca Statement on Principles, Policy and Practice in Special Needs Education’ (UNESCO, 1994). 151 Committee on the Rights of Persons with Disabilities, ‘General Comment No 4—Article 24: Right to inclusive education’, UN Doc CRPD/C/GC/4 (26 August 2016) para 11, quoting OHCHR, ‘Thematic study on the right of persons with disabilities to education’ UN Doc A/HRC/25/29 (18 December 2013) para 4 and UNICEF, ‘The Right of Children with Disabilities to Education: A Right-Based Approach to Inclusive Education’ (Geneva 2012). 152 153 For further analysis on the human rights model see (n 140). Art 8(1)(a) CRPD.
arduin
100
General Principles
the principle is closely intertwined with the principles of equality of opportunity and respect for the inherent dignity of persons with disabilities. Interestingly, during the third session of the Ad Hoc Committee, the Asia Pacific Forum pointed out that the principle of difference is ‘based on, and states quite effectively, the concept that disability is a universal feature of the human condition and that legislation, social policies and environments should accordingly reflect the full range of diversity of abilities that exist in society’.154 This emphasis on diversity was a prevalent theme in subsequent sessions. For instance, Chile suggested, during the fourth session, to redraft the principle of difference in terms of respect for ‘diversity as an essential element of the human condition’.155 Similarly, Mexico proposed to replace the term ‘humanity’ with the concept of ‘human dignity’, whilst the NHRIs recommended that the reference to ‘respect for difference’ be changed to the more universal ‘respect for human diversity’.156
7. Paragraph (e)—Equality of Opportunity Like the principles of non-discrimination and participation, the principle of equality of opportunity is a cornerstone of the Convention. Whilst distinct from the principle of non-discrimination,157 the two principles are often read together and have been identified as the ‘twin-pillars’ of the Convention.158 In this sense, the concept of equality reaffirms the essence of the Convention, which is not to create new rights, but to reaffirm existing human rights in the context of disability.159 The principle of equality of opportunity is ubiquitous; it is enshrined in international treaties,160 national constitutions,161 and statutory provisions in several jurisdictions.162 Scholars have argued that this principle establishes a compromise between a somewhat weak egalitarian distributive goal and the use of equal treatment as the ‘normal’ practice.163 For instance, Fredman suggests that equality of opportunity seeks Available at: . Available at: . 156 ibid. 157 This distinction between the two principles of non-discrimination and equality is apparent from the design of article 3. Each principle is enshrined in a different paragraph. For further analysis on the difference between non-discrimination norms and equality norms, see Nicholas Bamforth, ‘Conceptions of Anti- Discrimination Law’ (2004) 24 Oxford Journal of Legal Studies 693, 704; Hugh Collins, ‘Discrimination, Equality and Social Inclusion’ (2003) 66 Modern Law Review 16; Hugh Collins, ‘Social Inclusion: A Better Approach to Equality Issues?’ (2005) 14 Transnational Law and Contemporary Problems 897; Elisa Holmes, ‘Anti-Discrimination Rights without Equality’ (2005) 68 Modern Law Review 175; Tarunabh Khaitan, A Theory of Discrimination Law (OUP 2015); Colm O’Cinneide, ‘The Uncertain Foundations of Contemporary Anti-Discrimination Law’ (2011) 11 International Journal of Discrimination and the Law 7. 158 159 Mégret (n 92) 501. This is reflected in the purpose of CRPD (Art 1). 160 Equality of opportunity is referred to in article 7(c) ICESCR (employment), article 4(1) CEDAW, articles 28 (education) and 31(cultural participation) CRC, preamble and rule 4 UN Standard Rules, chapter F on Equalization of Opportunities, paras 21–30 of the World Programme, UNGA Res 37/52 (3 December 1982), preamble, para 20 and articles 20 and 27 Revised European Social Charter, and preamble and article 4 ILO Convention Concerning Vocational Rehabilitation and Employment (Disabled Persons) No 159 (ILO Convention, 1983). 161 Section 16, Constitution of Finland (2011), s 15 Canadian Charter and Constitution of SA. 162 For instance, Equality Act 2010, s 149 (UK) and the Human Rights and Equality Commission Act 2014, s 42(1) (Ireland). 163 Collins, ‘Discrimination, Equality and Social Inclusion’ (n 153) 20; Timothy Macklem, ‘Equality and Opportunity—Reconciling the Irreconcilable’ (2005) 68 Modern Law Review 1016, who notes that this compromise is, in essence, political and reconciles many parties, who would otherwise fight against one another (1033). 154 155
arduin
Article 3
101
to equalize a starting position, by removing material obstacles at the starting line.164 To quote Fredman, ‘[o]nce all have equal opportunities, they should be judged on individual merits.’165 Fredman points out that this conception of equality is compatible with inequality in results.166 In the context of disability, equality of opportunity places greater emphasis on institutional and environmental barriers. The principle presupposes that by removing institutional barriers, persons with disabilities who have been historically excluded will be in the position to achieve substantive equality.167 For the purposes of this chapter, and without delving further into this debate,168 suffice it to say that the concept of equality was, from the outset of the drafting process, associated with a substantive approach. According to the Danish Institute, equality of opportunity is closely intertwined with the concept of ‘difference’. In addition, it noted that this concept takes into account both personal and environmental barriers and that positive actions may be required to accommodate differences.169 Put another way, equality of opportunity is distinct from the equality of treatment principle, which is observed in other provisions of the Convention.170 It is closely associated with the principles of respect for difference and respect for the inherent dignity of all human beings regardless of difference. When read together, these principles reflect the purpose of the Convention, which is not only about reaffirming the intrinsic worth of each human being and their dignity, but also about their equal inherent self-worth. Within the architecture of the Convention, the concept of equality is referred to in most of the substantive provisions with few exceptions.171 Aspects of equality are further enshrined in article (3)(g) discussed below and in two stand-alone articles, namely article 5 and article 12, concerning equality before the law, which are discussed further elsewhere in this volume. It is noteworthy that the principle of equality of opportunity is of particular importance in the context of socio-economic rights. This is reflected in provisions relating to independent living,172 education,173 and employment.174
8. Paragraph (f)—Accessibility The principle of accessibility has long been recognized in international human rights law. Aspects of the principle may be found in article 25(c) ICCPR,175 article 5(f ) of 164 For further analysis on the meaning of equality of opportunity, see Sandra Fredman, Discrimination Law (OUP 2002), ch 1; Sandra Fredman, ‘Substantive Equality Revisited’ (2016) 14 International Journal of Constitutional Law 712; Collins, ‘Social Inclusion: A Better Approach to Equality Issues?’ (n 153). 165 166 Fredman, ‘Substantive Equality Revisited’ (n 164). ibid. 167 For further discussion of the principle of equality of opportunity in the context of disability, see Marcia Rioux and Christopher Riddle, ‘Values in Disability Policy and Law: Equality’ in Marcia Rioux, Lee A Basser, and Melinda Jones (eds), Critical Perspectives on Human Rights and Disability Law (Brill 2011) 37, 44. 168 For an in-depth analysis of the debate relating to the meaning of equality, see (n 157); Arnardóttir (n 102). 169 Statement available at: (n 73). 170 According to this Aristotelean approach, like cases should be treated alike and unlike cases unalike. For instance, gender equality refers to the equality treatment principle as does equality before the law enshrined in art 12 CRPD. 171 Only articles 16, 20, and 26 CRPD do not refer to a form of equality. 172 Art 19(a) relates to the opportunity to choose one’s place of residence. 173 Art 24(1) refers to equality of opportunity in the context of an inclusive education system. 174 Art 27(1) reaffirms the right of persons with disabilities to the opportunity to gain a living. 175 Art 25(c) enshrines the right of every citizen to have access, on general terms of equality, to public service in his or her country.
arduin
102
General Principles
the International Convention on the Elimination of All Forms of Racial Discrimination (ICERD),176 and rule 5 of the UN Standard Rules.177 In addition, the importance of this principle in the context of disability has been emphasized by the UN Committee on Economic, Social and Cultural Rights,178 the UN Committee on the Rights of the Child,179 and the report on disability by the World Bank.180 Within the Convention, the principle of accessibility serves as a powerful instrument for realizing the purpose of the CRPD, that is for guaranteeing the full and effective participation of persons with disabilities in society. Indeed, the CRPD Committee views the principle as ‘a disability-specific reaffirmation of the social aspect of the right of access’ and as a ‘precondition for the effective and equal enjoyment of civil, political, economic, social and cultural rights by persons with disabilities’.181 In this sense, the principle of accessibility, together with the principles of autonomy and equality, reflect the indivisibility and interdependence of all human rights.182 The CRPD Committee places a strong emphasis on the relationship between accessibility and equality of opportunity, noting that ‘[w]ithout access to the physical environment, to transportation, to information and communication, including information and communications technologies and systems, and to other facilities and services open or provided to the public, persons with disabilities would not have equal opportunities for participation in their respective societies.’183 The Committee also observes that a denial of accessibility ‘should be viewed in the context of discrimination’, although accessibility should be differentiated from reasonable accommodation in the sense that the latter is individually focused, whereas the former is group focused.184 Accordingly, it seems that accessibility is a cornerstone of both the principles of non- discrimination and equality and the principles of participation and inclusion.
176 Art 5(f ) guarantees that everyone has the right of access to any place or service intended for use by the general public, such as transport, hotels, restaurants, cafes, theatres, and parks. 177 Rule 5 affirms the ‘overall importance of accessibility in the process of the equalization of opportunities in all spheres of society. For persons with disabilities of any kind, States should (a) introduce programmes of action to make the physical environment accessible; and (b) undertake measures to provide access to information and communication.’ (n 113). 178 CESCR Committee, ‘General Comment No 5: Persons with Disabilities’ (n 114) paras 17 and 33. 179 CRC Ctee, ‘General Comment No. 9: Children with Disabilities’ UN Doc CRC/C/GC/9 (27 February 2007), in which the Committee noted that ‘the physical inaccessibility of public transportation and other facilities, including governmental buildings, shopping areas and recreational facilities, was a major factor in the marginalisation and exclusion of children with disabilities and markedly compromised their access to services, including health and education’ (para 39). 180 UN World Health Organization, ‘World Report on Disability: Summary’ UN Doc WHO/NMH/VIP/ 11.01 (2011), in which the World Bank observed that the built environment, transport systems, and information and communication are often inaccessible to persons with disabilities. It further noted that this lack of access often prevents persons with disabilities from enjoying some of their basic rights, such as health, education, employment, and participation (10). 181 CRPD Committee, ‘General Comment No 2’ (n 97) para 1. 182 The universality and interdependence of all human rights is reaffirmed in paragraph (c) preamble. 183 CRPD Committee, ‘General Comment No 2’ (n 97) para 1. 184 Committee on the Rights of Persons with Disabilities, ‘General Comment No 2’ (n 97) paras 24 and 25.
arduin
Article 3
103
9. Paragraph (g)—Equality between Men and Women The principle of gender equality is a well-established principle in international human rights law. It is enshrined in the ICESCR,185 the ICCPR,186 the CRC, and most of the substantive provisions of the CEDAW.187 In General Comment No. 16, the UN Committee on Economic, Social and Cultural Rights clarified that the concept of equality in the context of gender refers both to de jure (formal) and de facto (substantial) equality.188 In this sense, it pointed out that the achievement of de facto equality requires more than simply enacting laws or adopting policies that are prima facie gender-neutral.189 In the context of the CRPD, the principle of gender equality reaffirms the general ethos of the Convention as a non-discrimination and equality instrument. Interestingly, gender equality was not initially included in the draft prepared by the Working Group. However, during the third and fourth sessions, several delegations supported the view that the issue of gender should be explicitly addressed by the Convention.190 As it stands, the Convention goes beyond guaranteeing equality in and before the law191 to also guaranteeing gender equality in practice. This holistic approach to equality is particularly preponderant in article 6, which addresses the specific rights of women with disabilities. Read in conjunction with the provisions of the CEDAW, the principle of gender equality further emphasizes the compounded (intersectional) forms of discrimination that women with disabilities face in practice.
10. Paragraph (h)—Respect for the Evolving Capacities of Children with Disabilities and Respect for the Right of Children with Disabilities to Preserve their Identities Whilst gender equality heeds the situation of women with disabilities, the principle of respect for the evolving capacities of children addresses the specific rights of children with
185 Art 3 ICESCR provides that ‘[t]he States Parties to the present Covenant undertake to ensure the equal right of men and women to the enjoyment of all economic, social and cultural rights set forth in the present Covenant’. 186 Like the ICESCR, Art 3 ICCPR provides that ‘[t]he States Parties to the present Covenant undertake to ensure the equal right of men and women to the enjoyment of all civil and political rights set forth in the present Covenant’. 187 For instance, reference to the principle of equality between men and women may be found in the preamble and in Arts 2, 4, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, and 23 CEDAW. 188 UN Committee on Economic, Social and Cultural Rights, ‘General Comment No 16: The Equal Right of Men and Women to the Enjoyment of All Economic, Social and Cultural Rights’ UN Doc E/C12/2005/4 (11 August 2005) paras 17–21, available at: . 189 UN Committee on Economic, Social and Cultural Rights, ‘General Comment No 16’ (n 184) para 8. 190 Costa Rica, Canada, Mexico, and Norway were the initial proponents for including a gender perspective on equality. The proposal was also supported by Chile, Republic of Korea, International Disability Caucus, International Save the Children Alliance, and People with Disability Australia during the fourth session of the Ad Hoc Committee. Interestingly, the EU was initially reluctant to introduce this principle, although its view quickly changed in the fourth session of the Ad Hoc Committee. See Daily summary, session 3, available at: and session 4, available at: . 191 Art 12 CRPD.
arduin
104
General Principles
disabilities, which are further mentioned in paragraph (r) of the preamble192 and protected in article 7 of the Convention.193 The principle of respect for the evolving capacities of children with disabilities is a novel principle in international human rights law. The CRC, which is the first human rights treaty that prohibits discrimination against children on the basis of disability194 and recognizes the rights of children with disabilities to have access to special care and assistance in the domestic legal orders,195 does not explicitly refer to the principle of respect for the evolving capacities of children with disabilities. The two provisions that come the closest to the principle of respect for the evolving capacities of children with disabilities are article 5 CRC, which refers to the evolving capacities of children, and article 23(1) CRC, which requires states party to ‘ensure dignity, promote self-reliance and facilitate the active participation [of a child with disability] in the community’. As mentioned above, this principle was suggested during the seventh session of the Ad Hoc Committee by the International Disability Caucus (IDC).196 The IDC was of the view that, in general, children have a different legal status than adults, in the sense that they lack autonomy in the exercise of their rights. The IDC noted: [t]hese rights are granted to their parents who have responsibilities for decision-making in respect of their children. Only gradually, as they acquire capacity, do these rights transfer to them. The principle that children should acquire the right to take responsibility for the exercise of their rights is embodied in article 5 of the CRC. However for children with disabilities, this process of gradual transfer of decision-making responsibility is widely denied. There is too little recognition or willingness to allow them to exercise their rights for themselves. Children and young people with disabilities argue strongly for greater respect for their capacities and the right to independent decision-making.197
The main concern that emerged during the negotiation of this principle was that the absence of a provision dealing exclusively with the rights of children with disabilities would have the effect of excluding children from the scope of the Convention.198 This concern was also expressed by UNICEF, which drew particular attention to the ineffective implementation of the CRC in the context of children with disabilities.199 In its statement to the Ad Hoc Committee, UNICEF observed that, although the CRC applies in theory to all children, including children with disabilities: ‘evidence from monitoring the implementation of the CRC suggests that governments do not give consideration to the rights of children with disabilities except with respect to the provisions of article 23’.200 In this context, UNICEF was supportive of the inclusion of a principle that pays particular attention to children with disabilities and that subsequently imposes obligations on governments to ensure that they are afforded equal respect for their rights. 192 Para (r) preamble reaffirms the principle according to which ‘children with disabilities should have full enjoyment of all human rights and fundamental freedoms on an equal basis with other children’ and recalls the ‘obligations undertaken by States Parties to the Convention on the Rights of the Child’. 193 194 For further details, see chapter discussing article 7 of the Convention. Art 2 CRC. 195 Art 23 CRC. 196 The draft of the IDC was supported by other delegations, in particular South Africa, the Russian Federation, Canada, Costa Rica, Israel, Kenya, and Bosnia and Herzegovina. 197 Available at: . 198 This concern was also expressed by UNICEF in its Statement for the Seventh Session of the Ad Hoc Committee 16 January–3 February 2006, available at: . 199 UNICEF (n 198). 200 ibid para 3(2).
arduin
Article 3
105
As it stands, the principle of respect for the evolving capacities of children is closely intertwined with the principle of participation. Article 12 CRC recalls that children should participate in decision-making that relates to their life and that the views of children should be given ‘due weight in accordance with [their] age and maturity’. Like the principle of gender equality, the inclusion of a principle concerning respect for the evolving capacity of children with disabilities has a double effect. First, it complements the provisions of the CRC with respect to children with disabilities. Second, it heeds the situation of girls with disabilities, who are often more vulnerable than other children due to gender discrimination.201 As pointed out by the Committee on the Rights of the Child, some children with disabilities, such as girls with disabilities, indigenous girls with disabilities, and children with disabilities living in rural areas are specially vulnerable due to multiple forms of discrimination.202
201
See paras (p) and (q) preamble and Art 6 CRPD. CRC Ctee, ‘General Comment No 9’ (n 179) para 8.
202
arduin
Article 4 General Obligations 1. States Parties undertake to ensure and promote the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability. To this end, States Parties undertake: (a) To adopt all appropriate legislative, administrative and other measures for the implementation of the rights recognized in the present Convention; (b) To take all appropriate measures, including legislation, to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities; (c) To take into account the protection and promotion of the human rights of persons with disabilities in all policies and programmes; (d) To refrain from engaging in any act or practice that is inconsistent with the present Convention and to ensure that public authorities and institutions act in conformity with the present Convention; (e) To take all appropriate measures to eliminate discrimination on the basis of disability by any person, organization or private enterprise; (f) To undertake or promote research and development of universally designed goods, services, equipment and facilities, as defined in article 2 of the present Convention, which should require the minimum possible adaptation and the least cost to meet the specific needs of a person with disabilities, to promote their availability and use, and to promote universal design in the development of standards and guidelines; (g) To undertake or promote research and development of, and to promote the availability and use of new technologies, including information and
broderick
communications technologies, mobility aids, devices and assistive technologies, suitable for persons with disabilities, giving priority to technologies at an affordable cost; (h) To provide accessible information to persons with disabilities about mobility aids, devices and assistive technologies, including new technologies, as well as other forms of assistance, support services and facilities; (i) To promote the training of professionals and staff working with persons with disabilities in the rights recognized in this Convention so as to better provide the assistance and services guaranteed by those rights. 2. With regard to economic, social and cultural rights, each State Party undertakes to take measures to the maximum of its available resources and, where needed, within the framework of international cooperation, with a view to achieving progressively the full realization of these rights, without prejudice to those obligations contained in the present Convention that are immediately applicable according to international law. 3. In the development and implementation of legislation and policies to implement the present Convention, and in other decision- making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations. 4. Nothing in the present Convention shall affect any provisions which are more conducive to the realization of the rights of persons with disabilities and which may be contained in the law of a State Party or international law in force for that State. There
Article 4 shall be no restriction upon or derogation from any of the human rights and fundamental freedoms recognized or existing in any State Party to the present Convention pursuant to law, conventions, regulation or custom on the pretext that the present Convention does not
recognize such rights or freedoms or that it recognizes them to a lesser extent. 5. The provisions of the present Convention shall extend to all parts of federal states without any limitations or exceptions.
1. Introduction 2. Background and Travaux Préparatoires 3. Paragraph 1 3.1 Ensure and Promote the Full Realization of All Human Rights and Fundamental Freedoms for All Persons with Disabilities 3.2 Without Discrimination of Any Kind on the Basis of Disability 4.1 Paragraph 1(a)
4.1.1 All Appropriate Legislative, Administrative, and Other Measures
4.2 Paragraph 1(b) 4.3 Paragraph 1(c) 4.4 Paragraph 1(d) 4.5 4.6 4.7 4.8 4.9
107
4.4.1 Public Authorities and Institutions
Paragraph 1(e) Paragraph 1(f ) Paragraph 1(g) Paragraph 1(h) Paragraph 1(i)
4.9.1 ‘Training of professionals and staff working with persons with disabilities’
5. Paragraph 2 5.1 Progressive Realization 5.2 Maximum of Available Resources 6. Paragraph 3 7. Paragraph 4 7.1 Provisions which are More Conducive to the Realization of the Rights of Persons with Disabilities 7.2 No Restriction upon or Derogation from 8. Paragraph 5: All Parts of Federal States
107 108 116 116 117 119 119 120 121 122 122 122 125 127 129 129 129 131 131 132 134 137 137 137 138
1. Introduction The UN Convention on the Rights of Persons with Disabilities (CRPD) sets forth a host of obligations in article 4 thereof, with a view to encouraging national legal and policy reform and guiding domestic implementation of the Convention. The content of article 4 CRPD is of cross-cutting application, since it contains overarching principles that permeate the text of the Convention as a whole. The obligations contained in article 4 CRPD thus seek to contextualize the interpretation of the substantive provisions of the Convention. Article 4 enumerates both general obligations and specific obligations, including the obligation to universally design structures. This distinguishes it broderick
108
General Obligations
from similar provisions in other human rights treaties,1 which are more in the nature of general obligations of compliance. As Della Fina has pointed out, article 4 is ‘a key provision’ in fully understanding the duties undertaken by states parties to the Convention ‘as the norm defines the scope of these obligations and their legal nature’.2 During the negotiating sessions leading up to the adoption of the CRPD, states themselves recognized ‘the importance of article 4 as a guide [ . . . ] on the nature and implementation of their legal obligations’.3 It is to those negotiating sessions that we now turn, in order to extract vital information to allow us to understand the key provisions of article 4 CPRD.
2. Background and Travaux Préparatoires The drafting of article 4 proved to be a difficult task. In the seventh session of the Ad Hoc Committee, the Chairman of the Committee, Don MacKay (Ambassador of New Zealand), noted that the draft article on general obligations (draft article 4) was to contain a great deal of material that had been moved from other articles of the Convention ‘in order to consolidate up front elements perceived to be of a general, generic and cross- cutting nature’.4 The objective of this was ‘to reinforce their overall applicability and reduce the textual overload created by constant repetition of particular points throughout the various articles’.5 Among the principles incorporated into the final version of article 4 are universal design of goods, services, equipment, and facilities; new technologies; accessible information; consultation with, and active involvement of, persons with disabilities (through their representative organisations) in the development of legislation and policies to implement the Convention, as well as language relating to the progressive realization of economic, social and cultural obligations. The discussions on draft article 4 were wide-ranging in scope. During the negotiations at the third session of the Ad Hoc Committee, a proposal was put forward by some countries6 to include a specific provision on the right to remedies. The Bangkok recommendations7 noted that ‘there should be enforcement mechanisms, including provision of remedies, within institutional and/or judicial systems’.8 Notwithstanding this, the original Working Group text of draft article 4 did not include any reference to remedies and
See eg Art 2 ICCPR and Arts 2 and 3 CEDAW. Valentina Della Fina, ‘Article 4 [General Obligations]’ in Valentina Della Fina, Rachele Cera, and Giussepe Palmisano (eds), The United Nations Convention on Human Rights: A Commentary (Springer 2017) 141. 3 See the comments of Canada, Ad Hoc Committee, ‘Daily Summary of discussions at the fourth session of UN Convention on the Rights of Persons with Disabilities (24 August 2004), available at: . 4 Ad Hoc Committee, ‘Daily Summary of discussions at the seventh session of UN Convention on the Rights of Persons with Disabilities’ (30 January 2006), available at: . 5 6 ibid. Inter alia, the African group and Thailand. 7 Bangkok Recommendations: Expert Group Meeting and Seminar on an International Convention to Protect and Promote the Rights and Dignity of Persons with Disabilities, Bangkok, Thailand, 2–4 June 2003. 8 Ad Hoc Committee, ‘Compilation of Proposals for Elements of a Convention’ (15 January 2004) 86, available at: (accessed 6 April 2017). This document is comprised of the Compilation of proposals for a Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities, UN Doc A/AC265/ 2003/CRP/13 (New York, 16–27 June 2003) and the NGO contributions to the elements of a convention, UN Doc A/AC.265/2003/CRP.13/Add.1 (New York, 16–27 June 2003). 1 2
broderick
Article 4
109
many delegations commented on this omission.9 A footnote was added to the Working Group’s report on draft article 4, which stated that previous versions of that article had included specific provisions on the right to an effective remedy.10 These had not been incorporated into the Working Group’s final draft due to the concern that there was insufficient consensus in international human rights law on the issue to justify including a specific article on the right to an effective remedy or access to justice.11 The Asia-Pacific Forum of National Human Rights Institutions (APF) suggested a rather long addition to the draft of article 4, to include references to remedies.12 However, some delegations13 at the negotiating sessions noted that while the ICCPR14 includes such a provision, the ICESCR15 does not. They noted that it may be difficult, therefore, to include such an article in a convention that elaborates the rights contained in both Covenants. No consensus was reached on the issue of including a provision on remedies in article 4 at the third session and this issue would return several times as a topic of lengthy discussion in later sessions of the Ad Hoc Committee. On a separate topic, Ireland, speaking on behalf of the EU, stated that it had looked carefully at draft articles 4, 5, and 7, because it believed that these three articles ‘dealt to a large extent with non-discrimination and ways and means to assure non-discrimination’.16 For that reason, the EU delegation made a proposal which provoked controversy during the negotiations at the third session of the Ad Hoc Committee. The proposal related to the merging of draft article 4 with draft article 5 (on positive attitudes to persons with disabilities) and draft article 7 (on equality and non-discrimination) to form a single article. The EU delegation suggested that these merged provisions would establish a set of principles needed to secure non-discrimination for persons with disabilities. The delegation proposed a new title for the proposed article, namely ‘Non-Discrimination’ and sought to amend the chapeau of paragraph 1 of draft article 4 to focus on securing non- discrimination for persons with disabilities. Several delegations, including Mexico, expressed ‘deep concern’ at the direction of the debate, which the Mexican delegation felt was ‘very quickly moving away from the [Working Group] text’.17 Mexico was of the opinion that should the EU proposal form the basis of the provision on general obligations, it would ‘mutilate’ the Working Group text.18 The Kenyan delegation felt that the Convention went ‘beyond fighting discrimination’ and therefore that the EU proposal should not be adopted. The European Disability Forum (EDF) also objected to the EU 9 See Ad Hoc Committee, Working Group to draft a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, ‘Report to the Ad Hoc Committee, Annex I’ (16 January 2004) fn 18, available at: . 10 11 ibid fn 18. ibid. 12 See United Nations Enable, ‘NGO Comments on the draft text: Draft Article 4, Proposal by Asia Pacific Forum of National Human Rights Institutions’ (25 May 2004), available at: . 13 Japan, for instance, associated itself with the comments of South Korea, Australia, New Zealand, Canada, and Serbia and Montenegro, stating that it was cautious about a general obligation on remedies. Ad Hoc Committee, ‘Daily Summary of discussions at the fourth session of UN Convention on the Rights of Persons with Disabilities’ (30 August 2004), available at: . 14 15 UNGA Res 2200A (XXI) (16 December 1966). ibid. 16 Ad Hoc Committee, ‘Daily Summary of discussions at the third session of UN Convention on the Rights of Persons with Disabilities’ (24 May 2004), available at: . 17 18 ibid. ibid.
broderick
110
General Obligations
proposal to merge the draft article on general obligations with a non-discrimination provision, in particular restricting the chapeau to non-discrimination. The general consensus was that the EU’s proposal would substantially narrow the scope of the Convention and that the chapeau of the article on General Obligations should be in line with the purpose of the Convention in article 1.19 Ireland, speaking on behalf of the EU, responded to the comments of delegations regarding the foregoing proposal as follows: The EU advocated four basic principles—non- discrimination, equality of opportunity, autonomy, and participation/inclusion—and the EU sought to ensure that those principles remained at the core of the final draft. Non- discrimination is an essential element, which needs to be reflected in the Convention. This is why the EU proposed strengthening the language of non-discrimination, but its intention was not ‘to dilute’ article 4.20 During the third session of the Ad Hoc Committee, the EU also put forward a proposal to reword paragraph (c) of draft article 4,21 which required states parties to mainstream disability issues into all economic and social development policies and programmes. The following rewording was suggested by the EU: ‘States shall ensure that the needs and concerns of [persons with disabilities] are incorporated into economic and social development plans and policies, and not treated separately’.22 The rewording was put forward by the EU in order to address its concerns with regard to the use of the word ‘mainstreaming’ in an international legal instrument. Liechtenstein also maintained that another wording should be used, particularly that which was contained in draft article 4(1)(c), as it claimed that the term ‘mainstreaming’ was difficult to translate into other languages.23 However, EDF objected to the phrase: ‘not treating persons with disabilities separately’, as proposed by the EU, as it was of the opinion that mainstreaming requires a twin-track approach, calling for specific programs while promoting inclusion in regular ones. On a separate issue, Canada advocated24 the removal of the words ‘within their jurisdiction’ from paragraph 1 of draft article 4, which contained the following chapeau: ‘States parties undertake to ensure the full realisation of all human rights and fundamental freedoms for all individuals within their jurisdiction’. The draft article also contained a footnote,25 which stated that the phrase ‘within their jurisdiction’ would need closer 19 Lebanon, New Zealand, Costa Rica, Jordan, and others questioned whether the EU proposal supported the underlying purposes of the Convention. National Human Rights Institutions (NHRIs) felt that focusing on non-discrimination would substantially narrow the scope of the Convention and would signal a move away ‘from a comprehensive international instrument’. Ad Hoc Committee, Daily Summary of discussions at the third session of UN Convention on the Rights of Persons with Disabilities (25 May 2004), available at: . 20 Ad Hoc Committee, Daily Summary of discussions at the third session of UN Convention on the Rights of Persons with Disabilities (25 May 2004), available at: . 21 Ad Hoc Committee, Daily Summary of discussions at the third session of UN Convention on the Rights of Persons with Disabilities (24 May 2004), available at: . 22 ibid. 23 Serbia also expressed general support for the EU’s proposal, as it felt that ‘mainstreaming’ was ‘a term that people who are not from the disability movement might not know’. 24 See (n 21). 25 See Ad Hoc Committee, Working Group to draft a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, ‘Report to the Ad Hoc Committee, Annex I’ (16 January 2004) fn 18, available at: .
broderick
Article 4
111
examination by the Ad Hoc Committee. The footnote pointed to the fact that the phrase was reproduced from article 2 of the Convention on the Rights of the Child (CRC) and ‘may be too inclusive and imply, for example, that rights that are not guaranteed for non- citizens could be extended to non-citizens with disabilities’. The Canadian delegation maintained that the inclusion of the phrase ‘within their jurisdiction’ presented complications with regard to the personal scope of the Convention. During the negotiations at the fourth session of the Ad Hoc Committee, The Netherlands (speaking for the EU) withdrew the EU’s previous proposal to merge draft articles 4, 5, and 7 into a separate and stand-alone article 3.26 The EU also withdrew its amendment to draft article 4(1)(c), given feedback (in particular from NGOs) that the wording ‘and not treated separately’ might ‘create a false impression that the EU is against specific disability programmes or policies’.27 The Facilitator at the fourth session noted that the phrase ‘within their jurisdiction’ is ‘limiting’,28 and there appeared to be quite a lot of support for the deletion of that phrase. The Facilitator acknowledged that it did not really ‘make sense’29 to engage in a debate on the issue if the whole sentence was going to be reshaped in light of article 1 of the Convention. The phrase ‘within their jurisdiction’ was not retained in the final text of the CRPD, which simply clarifies the personal scope of the Convention as encompassing all persons with disabilities, including those who have ‘long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others’.30 Discussions began about the issue of progressive realization at the fourth session of the Ad Hoc Committee. The language proposed by delegations on progressive realization was largely drawn from article 2(1) International Covenant on Economic, Social and Cultural Rights (ICESCR) and article 4 CRC. Israel proposed the addition of a third paragraph to draft article 4 based on the text of article 4 CRC. The Israeli delegation was of the opinion that the second sentence of its proposed text should be amended to cite the Convention articles to which progressive realization would apply. Several delegations later rejected adding specific articles to the text on progressive realization.31 Israel also suggested that the second sentence of its proposed text should be amended so that the phrase ‘with a view to achieving progressively the full realization of such rights’ (based on article 2 (1) ICESCR) would replace the last phrase on international cooperation.32 26 Ad Hoc Committee, Daily Summary of discussions at the fourth session of UN Convention on the Rights of Persons with Disabilities (24 August 2004), available at: . 27 ibid. 28 Ad Hoc Committee, Daily Summary of discussions at the fourth session of UN Convention on the Rights of Persons with Disabilities (31 August 2004), available at: . 29 30 ibid. Art 1 CRPD. 31 Liechtenstein stated that the proposal to specifically enumerate the provisions that were to be subject to progressive realisation was ‘not useful’ as almost all the articles in the convention are ‘somewhat heterogeneous in themselves’, and there is also ‘no clear distinction between civil and political rights and economic, social and cultural rights’. Furthermore, it was felt that it was ‘unnecessary to reference articles which can be given immediate effect by States and is not possible because the specific circumstances of each State will differ’—see (n 26). 32 Ad Hoc Committee, Daily Summary of discussions at the fourth session of UN Convention on the Rights of Persons with Disabilities (25 August 25 2004), available at: .
broderick
112
General Obligations
The Coordinator of the session asked delegations to indicate whether they had a preference for the CRC or ICESCR language. Most countries favoured the CRC language, as it mentions economic, social and cultural rights explicitly. The EU noted that the language from the CRC was adequate from its perspective.33 India noted that there were differences in support among delegations for the CRC and ICESCR formulations, and a number of delegations had suggested the need to introduce the concept of progressive realization itself in the draft text (and not just the concept of ‘maximum resources’). India proposed merging textual references from article 4 CRC and article 2 ICESCR, noting that a combination of the wording in the two provisions ‘would cater to the legitimate concerns of developing countries’, where resource constraints only permit progressive realization of economic, social and cultural rights. India proposed adding a reference to progressive realization in draft article 4 CRPD, while retaining article 4 CRC as a basis. Thus, it was proposed to add the following text: ‘With a view to achieving progressively the full utilization of these rights’ after the phrase ‘States parties shall undertake such measures’ (in Israel’s proposed text above). According to Lebanon, clearly referencing the aim of progressive realization was ‘absolutely necessary’ if the CRC wording was to be adopted. Canada also supported a blend of article 4 CRC and the phrase ‘progressive realization’ or ‘progressively realized’ from the ICESCR. Canada agreed with India’s proposal to add text, such as ‘with a view to achieving progressively the full realization of these rights’. Since the language mirrors the language used by the Committee on Economic, Social and Cultural Rights (CESCR) in its elaboration on the obligations inherent in article 2(1) ICESCR, Canada was of the opinion that the language would be appropriate in the context of the CRPD. The Coordinator of the session noted that the language proposed acknowledges the fact that ‘different countries may vary in their capacity (particularly economic capacity) to implement economic, social and cultural rights at a particular time’. He noted that delegations appeared open to expressly referencing progressive realization in draft article 4 (noting support from Lebanon, Canada, Costa Rica, and others). Thailand was concerned, however, that not expressly referencing the need to give immediate effect to rights could lead to some forms of non-discrimination being subject to progressive realization. The Coordinator requested delegations to address the concerns of Thailand and its proposal that the language from article 4 CRC be used but stated that language should also be added ‘specifying an affirmative obligation to give immediate effect to those aspects of economic, social and cultural rights capable of immediate implementation’.34 The final text of article 4(3) CRPD reflects this suggestion put forward by Thailand, as will be outlined below. The next issue for consideration at the fourth session of the Ad Hoc Committee was the proposal to combine provisions that addressed the involvement of persons with disabilities in activities and decision-making that affect them, since there was considerable overlap and repetition throughout the draft set of articles proposed by the Working Group. Participants at the negotiating sessions also raised the issue of inclusion of families of persons with disabilities. India, for instance, wanted to incorporate the words ‘and 33 Ad Hoc Committee, Daily Summary of discussions at the fourth session of UN Convention on the Rights of Persons with Disabilities (30 August 2004), available at: . 34 ibid.
broderick
Article 4
113
their families where appropriate’ to the draft proposed by the Working Group,35 which simply read as follows: In the development and implementation of policies and legislation to implement this convention, states parties shall do so in close consultation with, and include the active involvement of, persons with disabilities and their representative organisations.36
Thailand did not object to the Indian proposal but considered it difficult to identify the circumstances in which such consultation would be appropriate.37 The Coordinator of the session noted that there was considerable divergence of views and that a substantial number of delegations were ‘not entirely comfortable with’ including references to families ‘on the same level as persons with disabilities’.38 Some delegations expressed concern that a reference to families in the general obligations would weaken the focus of the convention. Norway was ‘a bit skeptical’ about the introduction of the concept of families in an article on general obligations.39 Mexico agreed with Norway (and others) that the focus ‘should be on persons with disabilities, their rights, and empowering them to develop autonomously’.40 One alternative suggested by the Coordinator of the session was the option to reference families on an article-by-article basis, rather than introducing it as a general obligation. This is what was done in the end.41 The issue of remedies came up again in the fourth session of negotiations of the Ad Hoc Committee, when Lebanon reiterated its support for the inclusion of a provision on remedies as a general obligation, finding support for its position in paragraph 5 of the CESCR’s General Comment No 3. The Coordinator of the session noted the generally strong support that was evident with regard to including a provision on remedies in the Convention, with many supporting its incorporation in the provision dealing with general obligations and some suggesting that it would be best placed in draft articles 7 (non-discrimination) or 9 (legal capacity).42 At the beginning of the negotiations at the seventh session of the Ad Hoc Committee, several states submitted lengthy written proposals on various issues of debate.43 Austria, on behalf of the EU, proposed the insertion of a non-retrogression clause to ensure that the Convention did not ‘grant lower rights’ to people with disabilities than those that were currently available. It suggested text drawn from article 5(2) ICCPR, as reflected in its written proposal.44 With regard to the debate surrounding a provision on remedies and enforcement, Canada expressed concern about introducing remedies with regard to the rights contained in the CRPD. It pointed out that to include the concept in the CRPD would represent a significant departure from legal precedent. It noted that economic and social rights are of a different nature than civil and political rights and questioned
ibid. United Nations, Working Group to draft a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, Report to the Ad Hoc Committee, Annex I (16 January 2004), available at: . 37 38 39 40 See (n 33). ibid. ibid. ibid. 41 42 See the final text of Art 16(2), Art 23(3), Art 28(1), and Art 28(2)(c). See (n 33). 43 Written proposals were received from: Australia, available at: ; Chile, available at: ; Kenya, available at: ; and the EU, available at: . 44 See . 35 36
broderick
114
General Obligations
whether they should be implemented through direct remedies, particularly in dualist systems such as that found in Canada. Even though there was much debate surrounding, and much support expressed for, the inclusion of a provision on remedies, in the end the proposal was not adopted. It was concluded that a general provision on remedies was not appropriate as there was no international consensus45 on remedies in relation to economic, social, and cultural rights, and that no such provision exists in the ICESCR. It was felt that any provision adopted on remedies in the CRPD in relation to civil and political rights would create unnecessary distinctions between civil and political rights and economic, social, and cultural rights, and, moreover, the ICCPR already provides for remedies.46 Discussions on the issue of progressive realization were also resumed at the seventh session of the Ad Hoc Committee. Senegal, on behalf of the African Group, proposed amending the end of the draft provision on progressive realization, as proposed in earlier sessions by Israel (and outlined above). In order to ensure that immediate effect was given to those aspects of economic, social, and cultural rights capable of immediate implementation, Senegal suggested adding the following phrase: ‘With a view to achieving progressively the full realization of these rights, except where this would result in discrimination on the basis of disability’.47 The delegation of National Human Rights Institutions (NHRIs) expressed the view that ‘immediate application of social and cultural rights goes well beyond non-discrimination’48 and that this was not accurately reflected in the Senegalese proposal. It also noted that some rights described in the treaty could be classified as ‘hybrid rights’, for instance accessibility, ‘of which some aspects could take effect immediately and some only progressively’.49 NHRIs requested that the text be amended to give immediate effect to those rights that ‘can be put into immediate effect, including, but not limited to, non-discrimination’.50 Austria, on behalf of the EU, suggested adding the following phrase instead of the phrase proposed by the Senegalese delegation: ‘Without prejudice to the immediately applicable obligations emanating from international human rights law’.51 The final text of article 4(2) CRPD reflects the proposal by Austria. It reads as follows: With regard to economic, social and cultural rights, each state party undertakes to take measures to the maximum of its available resources [ . . . ] with a view to achieving progressively the full realization of these rights, without prejudice to those obligations contained in the present Convention that are immediately applicable according to international law.52
Regarding the concerns that some delegates had surrounding the use of the word ‘mainstreaming’ in an international human rights treaty, the International Disability Caucus (IDC) suggested that there should be an alternative wording to draft article 4(1)(c) of the 45 See eg Ad Hoc Committee, Daily Summary of discussions at the seventh session of UN Convention on the Rights of Persons with Disabilities (30 January 2006), available at: . 46 See eg the comments of New Zealand, Ad Hoc Committee, Daily Summary of discussions at the fourth session of UN Convention on the Rights of Persons with Disabilities (25 August 2004), available at: (accessed 14 April 2017). 47 See (n 45). 48 Ad Hoc Committee, Daily Summary of discussions at the seventh session of UN Convention on the Rights of Persons with Disabilities, (31 January 2006), available at: . 49 50 51 52 ibid. ibid. See (n 45). Art 4(2) CRPD.
broderick
Article 4
115
Working Group53 in order to ensure integration of persons with disabilities in all policies and programs, not only those related to economic and social development.54 The EU suggested the following wording to replace draft article 4(1)(c): ‘That the protection and promotion of the human rights of persons with disabilities should be taken into account in all policies and programmes’,55 and the delegation from Serbia and Montenegro slightly refined the EU’s chosen language. The wording adopted in the final text of article 4(1) (c) reflects the language proposed by Serbia and Montenegro, namely that states parties are required ‘to take into account the protection and promotion of the human rights of persons with disabilities in all policies and programmes’.56 Concerning the issue of participation of persons with disabilities in the implementation of the Convention, the original draft article 4(2), which would later become article 4(3), was worded as follows: In the development and implementation of policies and legislation to implement this convention, states parties shall do so in close consultation with, and include the active involvement of, persons with disabilities and their representative organisations.57
The Arab Organization of Disabled People noted that draft article 4(3) ‘could potentially be interpreted to sideline representative organizations by allowing governments to say that they had negotiated with persons with disabilities’ and wished to avoid this possibility by deleting the word ‘and’ (in italics above) and replacing it with ‘through’ or ‘by means of ’.58 In the final text of article 4(3) CRPD, this suggestion has been taken on board—it provides that ‘States parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations’.59 After lengthy discussion on article 4 CRPD, the negotiating sessions of the Ad Hoc Committee regarding that article came to an end. The final text of article 4 incorporates some elements of the original draft of the article suggested by the Working Group. However, following the discussions that took place at the various sessions and the contentious issues that arose therefrom, the content of the final provision on general obligations was altered quite significantly. The final text of article 4 is considerably longer than that put forward by the Working Group in 2004 and includes elements that had not previously been included, most notably the provision on non-retrogression and progressive realisation. The provision on progressive realisation, in particular, was the subject of detailed and sometimes contentious negotiations on the part of states parties, particularly developing states. Other alterations made to the original draft of article 4 relate to subtle, but significant, textual changes to the draft article (as highlighted above), which alter in some way the interpretation of article 4 obligations for states parties to the CRPD. In the following sections of this chapter, the constituent elements of article 4 CRPD will be broken down in order to delineate the various legal duties arising from the provision itself. Guidance will be drawn from, among others, the general comments and
53 As noted above, draft Art 4(1)(c) of the Working Group required States to mainstream disability issues into all economic and social development policies and programmes. 54 See (n 45). 55 56 See (n 48). ibid. 57 Ad Hoc Committee, Working Group to draft a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, Report to the Ad Hoc Committee, Annex I, (16 January 2004), available at: . 58 59 See (n 48). Art 4(3) CRPD, emphasis added.
broderick
116
General Obligations
concluding observations of the Committee on the Rights of Persons with Disabilities (CRPD Committee), relevant academic commentary and other secondary sources.
3. Paragraph 1 3.1 Ensure and Promote the Full Realization of All Human Rights and Fundamental Freedoms for All Persons with Disabilities By undertaking to ‘ensure and promote’60 the full realization of the rights of persons with disabilities under the Convention, states parties have vowed to adopt several concrete positive measures in safeguarding the full spectrum of rights contained in the Convention. State responsibility in respect of human rights obligations has been characterized61 as arising at three levels, namely obligations to respect, to protect, and to fulfil. The obligation to ‘ensure’ contained in article 4(1) CRPD corresponds broadly to the final level of the tripartite typology of human rights—the duty to fulfil. The CESCR has broken down the duty to ‘fulfil’ into obligations to facilitate, to provide and to promote.62 The Committee has asserted that the obligation to fulfil (facilitate) ‘requires states to take positive measures that enable and assist individuals and communities to enjoy’63 a particular right. The Committee observes that states parties are obliged to fulfil (provide) a specific right in the Covenant ‘when an individual or group is unable, for reasons beyond their control, to realize the right themselves by the means at their disposal [ . . . ].’64 The obligation to promote is related to education and awareness-raising duties for states.65 The obligation to ensure the full realization of rights will entail a duty for states parties to remove manifold barriers, both legal and structural, in order to pave the way towards increased participation and inclusion in society as well as guaranteeing that third parties do so. In that regard, states parties must take account of the underlying theoretical framework of the Convention. According to the embodiment of the social model contained in the CRPD66 (upon which the Convention’s foundations are built), states parties are 60 Notably, it was the Federation of and for People with Disabilities in Kenya that proposed adding ‘and to promote’ after ‘ensure’ in the first line of article 4(1), believing that states ‘cannot ensure the full realization of the rights of persons with disabilities in all instances but they can always promote them’. See (n 48). 61 Henry Shue (ed), Basic Rights, Subsistence, Affluence and U.S. Foreign Policy (2nd edn, Princeton University Press 1996); see also Asbjørn Eide, ‘Realisation of Social and Economic Rights and the Minimum Threshold Approach’ (1989) 10 Human Rights Law Journal 36, 37. 62 For further elaboration on these obligations see, Andrea Broderick, The Long and Winding Road to Equality and Inclusion for Persons with Disabilities: The United Nations Convention on the Rights of Persons with Disabilities (Intersentia 2015) at 80–81. 63 CESCR, General Comment No 13 on the right to education, UN Doc E/C12/1999/10 (8 December 1999) para 47. 64 65 ibid. ibid. 66 It is important to note that in its original form, the social model of disability was not viewed as ‘interactional’ (unlike its formulation in article 1 CRPD). The fundamental premises of the social model were developed initially by the Union of the Physically Impaired Against Segregation (UPIAS), a British organization advocating for the rights of people with physical disabilities. UPIAS made a distinction between ‘impairment’ and ‘disability’ (defined as ‘the disadvantage or restriction of activity caused by a contemporary social organisation which takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities’. UPIAS, Fundamental Principles of Disability, London, 1976, 3–4). The phrase ‘social model of disability’ was coined by Michael Oliver and was extended by other scholars and activists—such as Vic Finkelstein, Paul Abberley, and Colin Barnes—to other forms of disability; see Michael Oliver, ‘If I Had a Hammer’ in Colin Barnes and Geoffrey Mercer (eds), Implementing the Social Model of Disability: Theory and Research (Leeds: The Disability Press 2004), at 18–31. For more information
broderick
Article 4
117
required to target disabling and discriminatory barriers in society, which in interaction with impairment, hinder the full and equal participation of persons with disabilities. The social model is further bolstered by the human rights-based approach to disability, under which ‘disabled people are viewed as holders of rights, entitled to exercise all human rights and fundamental freedoms on an equal basis with others, entailing the provision of material support where necessary’.67 The duty to promote the full realization of rights for persons with disabilities ties in with article 8 CRPD on awareness-raising, pursuant to which states parties have undertaken to adopt effective and appropriate measures: (a) To raise awareness throughout society, regarding persons with disabilities, and to foster respect for the rights and dignity of persons with disabilities;68 (b) To combat stereotypes, prejudices and harmful practices relating to persons with disabilities, including those based on sex and age, in all areas of life;69 and (c) To promote awareness of the capabilities and contributions of persons with disabilities.70
The obligation to promote the rights of persons with disabilities can also be seen in article 24(4) CRPD, which requires states parties to ensure the provision of training and incorporation of disability awareness for professionals working at all levels of education, as well as article 25(d) CRPD, which requires states parties to raise awareness of human rights, dignity, autonomy and the needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care.
3.2 Without Discrimination of Any Kind on the Basis of Disability Pursuant to article 4(1) CRPD, states parties are required to ensure and promote the full realization of the substantive rights contained in the Convention ‘without discrimination of any kind on the basis of disability’. The non-discrimination and equality norms have been described as the ‘leitmotif ’ of the CRPD.71 The Convention endorses a substantive and transformative approach to equality. The CESCR highlights the fact that the substantive model of equality focuses on ‘the effects of laws, policies and practices and with ensuring that they do not maintain, but rather alleviate, the inherent disadvantage that particular groups experience’.72 This will involve, among others, the adoption of widespread positive measures, in the form of reasonable accommodations73 and positive action measures74 (such as quotas and preferential treatment for persons with disabilities in certain circumstances). According to Byrnes, transformative equality goes one step further and can be seen ‘as a form of substantive equality with systemic and structural dimensions’.75 A transformative approach on the social model generally and the shift in disability theory from the medical to the social model, see Tom Shakespeare, Disability Rights and Wrongs (Routledge: London 2006), at 15–22. 68 69 Broderick (n 62) 1. Art 8(a) CRPD. Art 8(b) CRPD. Art 8(c) CRPD. 71 Oddný Mjoll Arnardóttir, ‘A Future of Multidimensional Disadvantage Equality’ in Oddný Mjoll Arnardóttir and Gerard Quinn (eds), The UN Convention on the Rights of Persons with Disabilities: European and Scandinavian Perspectives (Martinus Nijhoff 2009) 41. 72 CESCR, General Comment No 16 on the equal right of men and women to the enjoyment of all economic, social and cultural rights, UN Doc E/C12/2005/4 (11 August 2005), para 7. 73 74 Arts 2 and 5(2) CRPD. Art 5(4) CRPD. 75 Andrew Byrnes, ‘Article 1’ in Marsha A Freeman, Christine Chinkin, and Beate Rudolf (eds), The UN Convention on the Elimination of All Forms of Discrimination Against Women (OUP 2012) 56. 67 70
broderick
118
General Obligations
to equality ‘seeks to address the socially constructed barriers, stereotypes, negative customs, and practices which hinder the full enjoyment of rights by marginalised groups’.76 The non- discrimination obligation features heavily throughout the text of the Convention, like a ‘red thread’.77 An important aspect of the definition of discrimination in the CRPD lies in the fact that it has a broad remit. ‘Discrimination on the basis of disability’ has been defined in article 2 of the Convention. ‘Reasonable accommodation’ is also defined in article 2 CRPD. The accommodation duty signifies ‘necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden’ on the duty bearer. The duty to accommodate reflects both the human rights-based model and the social model of disability. Under the accommodation duty, a wide variety of social actors will be required to modify existing customs, policies, laws and environments to facilitate the enjoyment of rights by persons with disabilities. Other than specifying that a denial of reasonable accommodation is a form of discrimination, the CRPD does not provide further detail on the forms of discrimination to be prohibited by states parties. Of course, article 2 CRPD clearly prohibits direct discrimination. Moreover, the concept of indirect discrimination, whereby laws, policies or practices appear neutral at face value, but have a disproportionately negative impact on persons with disabilities, is inherent in article 2 by virtue of the provision’s reference to the ‘effects’ of any distinctions. It has been acknowledged that ‘since the definition of discrimination under the CRPD covers ‘all forms of discrimination’, it can be taken to mean that harassment is covered, as well as an instruction to discriminate’.78 Prohibiting all forms of discrimination ‘on the basis of disability’ can also be construed as including those who have been discriminated against as a result of their association with a disabled individual,79 or those who experience discrimination due to a past or perceived impairment.80 Several references were made throughout the negotiating sessions to the foregoing elements of disability-based discrimination81 and the original text of the Working Group also included some of these
Broderick (n 62) 36. Lisa Waddington, ‘Equal to the Task? Re-Examining EU Equality Law in Light of the United Nations Convention on the Rights of Persons with Disabilities’ (2013) 4 European Yearbook of Disability Law 169. 78 Lisa Waddington and Andrea Broderick, ‘Disability law and the duty to reasonably accommodate beyond employment: A legal analysis of the situation in EU Member States, report prepared for the European Network of Legal Experts on Gender Equality and Non-Discrimination’ (European Commission 2016), available at: . 79 This interpretation is confirmed by prominent scholars in the field. See eg Michael Ashley Stein and Janet Lord, ‘Future prospects for the United Nations Convention on the Rights of Persons with Disabilities’ in Arnardóttir and Quinn (n 71) 28. 80 ibid. 81 The Chair of the Ad Hoc Committee presented Draft Elements for a Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities to the Working Group, in which discrimination was defined as including: ‘The less favourable treatment of an associate of a person with a disability because of that other person’s disability or because of the association, and a reference to disability includes a suspected, imputed, assumed or possible future disability, perceived disability, a past disability or the effects of a past disability, or the characteristics of a disability.’ (Draft Elements for a Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities to the Working Group, Proposed by the Chair of the Ad Hoc Committee (December 2003)), available at: . 76 77
broderick
Article 4
119
aspects in its definition of discrimination.82 None of these aspects of disability-based discrimination are referred to specifically in the final text of the CRPD. Notwithstanding this, the CRPD Committee has confirmed the expansive interpretation of disability- based discrimination. In its concluding observations to Spain, the Committee urged the state authorities to expand the protection of discrimination on the grounds of disability to cover explicitly ‘multiple disability, perceived disability and association with a person with a disability’. The Committee has also recommended that the Spanish Government ensure protection from denial of reasonable accommodation, as a form of discrimination, regardless of the level of disability.83 Trömel observes that this expansive understanding of the definition of disability-based discrimination will have implications for UN member states ‘when implementing the Convention and, in particular, when drafting national anti-discrimination legislation’.84 In those states where none, or only some, of the above-mentioned forms of disability- based discrimination are covered, substantial amendments to existing laws will be required in order to bring them in line with Convention obligations. The requirement to prohibit discrimination on the basis of disability is an immediate obligation, also in connection with socio-economic rights.85 The application of the non- discrimination norm, and particularly the duty to reasonably accommodate persons with disabilities across the Convention’s substantive socio-economic rights, demonstrates part of the transformative power of the CRPD on the whole.
4.1 Paragraph 1(a) 4.1.1 All Appropriate Legislative, Administrative, and Other Measures The obligation incumbent on states parties to give effect to CRPD obligations at the domestic level by adopting ‘all appropriate legislative, administrative and other measures’ is a broad one, which must also be read in light of state parties’ obligations under article 4(1)(b) CRPD below. The requirement to adopt appropriate legislative measures in implementing CRPD rights is also contained in the substantive articles of the Convention, such as article 15(2) (on freedom from torture or cruel, inhuman or degrading treatment or punishment), articles 16(1) and 16(5) (on freedom from exploitation, violence, and abuse) and article 27(1) (on work and employment). While the adoption of legislative measures is indispensable, obligations under article 4(1)(b) encompass a panoply of duties that is much broader than the mere adoption of legislation. The CESCR understands the term ‘appropriate means’ to include the provision of judicial or other remedies, where appropriate, as well as ‘financial, educational and social measures’.86 States parties to the CRPD must take this broad mandate into account 82 Draft article 7(2) of the Working Group stated that: ‘Discrimination shall include all forms of discrimination, including direct, indirect and systemic, and shall also include discrimination based on an actual or perceived disability’, available at: . 83 CRPD Committee, ‘Concluding Observations on Spain’ UN Doc CRPD/C/ESP/CO/1 (19 October 2011) para 20. 84 Stefan Trömel, ‘A Personal Perspective on the Drafting History of the United Nations Convention on the Rights of Persons with Disabilities’ (2009) 1 European Yearbook of Disability Law 124. 85 CESCR, General Comment No 3 on the nature of States Parties obligations UN Doc E/1991/23 (14 December 1990) para 1. 86 ibid para 7.
broderick
120
General Obligations
when devising ‘other measures’ to implement the Convention. The CESCR has affirmed that ‘it is desirable that states parties’ reports should indicate not only the measures that have been taken but also the basis on which they are considered to be the most “appropriate” under the circumstances’. Moreover, the Committee reminds states parties that ‘the ultimate determination as to whether all appropriate measures have been taken remains one for the Committee to make’.87 The same logic applies to states parties’ obligations under the CRPD, whereby domestic authorities should clearly indicate why they opted for various measures and why those measures are the most appropriate in the national context. The ultimate determination will then be for the CRPD Committee to make based on the facts before it.
4.2 Paragraph 1(b) The obligation contained in article 4(1)(b) of the Convention, requiring states parties to modify or abolish existing laws, regulations, customs, and practices that constitute discrimination, is similar to that contained in article 2 CERD and article 2 CEDAW. The requirement contained in article 4(1)(b) CRPD links in with the requirement of ‘equal protection of the law’ in article 5(1) CRPD. The latter provision essentially mandates that domestic legislatures do not adopt or maintain laws that discriminate against people with disabilities. Pursuant to article 4(1)(b) CRPD, states parties are required to adopt a wide variety of positive measures in order to bring their domestic laws, policies and practices in line with the Convention. In terms of adopting legislative measures, this will entail ensuring in the first instance that the various forms of discrimination identified above,88 including the unjustified denial of reasonable accommodation, are included as a distinct form of discrimination in national legislation. Furthermore, states must ensure that laws do not contain any provisions that inhibit fulfilment of the duty to eliminate discrimination in its various guises.89 The core human rights treaty bodies consider the elimination of de jure discrimination (discrimination in law) to be an essential pre-requisite for the attainment of de facto equality (equality in fact).90 In its General Comment No. 11 (1999), the CESCR has stated that ‘non-discrimination must be implemented fully and immediately’. In line with the pronouncements of other treaty bodies, domestic authorities should initiate the process of law reform as quickly as possible and establish a concrete programme for reform of discriminatory legislation and policies.91 The CRPD Committee itself has highlighted the importance of national action plans in bringing laws, policies, and practices in line with the Convention.92 When adopting legislative measures, the comments of the CRPD Committee must be borne in mind, namely that states must revise their domestic laws, including national constitutions, in order to bring them into line with the general principles and obligations contained in the Convention. Furthermore, the revision should cover civil, family, criminal, labour, and education law.93 88 89 ibid para 8. See section 3(2) above. Broderick (n 62) 115. See the views of Wouter Vandenhole, Non-Discrimination and Equality in the View of the UN Human Rights Treaty Bodies (Intersentia 2005) 27. 91 CEDAW Committee, Concluding Observations: Gabon UN Doc CEDAW/ C/ GAB/ CC/ 2– 5 (15 February 2005) para 23. 92 CRPD Committee, Concluding Observations on Austria UN Doc CRPD/C/AUT/CO/1 (8 October 2012) para 4. 93 CRPD Committee, Concluding Observations on Costa Rica UN Doc CRPD/C/CRI/CO/1 (12 May 2014) para 8. 87 90
broderick
Article 4
121
Once laws have been abolished or modified in line with the Convention’s non- discrimination mandate, monitoring mechanisms should be put in place by states parties to the CRPD.94 This remark should be viewed in light of article 33 CRPD, which requires states parties to designate one or more focal points within government for matters relating to the implementation of the Convention and to give due consideration to the establishment or designation of a coordination mechanism within government to facilitate related action in different sectors and at different levels. Article 4(1)(b) of the Convention highlights the fact that legislation is not the only means by which to combat discrimination. In addition to legislative measures, states parties are required to keep a firm eye on the elimination of discriminatory customs and practices. Shadow reports, submitted through the state reporting system, are an effective means by which the CRPD Committee will be alerted to ongoing discriminatory customs and practices. The CRPD Committee has already expressed its concern over discriminatory practices related, for instance, to major anomalies in access to free and compulsory primary education for disabled children, after the Peruvian National Confederation of People with Disabilities drew attention to the fact that 87.1 per cent of school-age children with disabilities in Peru remain outside of the education system.95 Other discriminatory practices relate, for example, to widespread state laws and practices excluding persons with disabilities from political participation and affecting the voting rights of persons with psychosocial disabilities, in particular.96 In modifying and abolishing existing laws, regulations, customs and practices that constitute discrimination, states are under an obligation to consult with, and actively involve, people with disabilities, through their representative organizations, at all stages of the decision-making and legal reform process, in line with article 4(3) CRPD (considered below).
4.3 Paragraph 1(c) Paragraph 4(c) of the Convention encapsulates the obligation of disability mainstreaming, reflecting Rule 14 of the United Nations Standard Rules on the Equalization of Opportunities for Persons with Disabilities.97 A disability mainstreaming approach contends that the full realization of the rights of persons with disabilities can only be ensured by including disability rights in all policies and programmes, both disability-specific and non-disability related policies and programmes. The CRPD Committee has commented on the obligation to mainstream disability rights on several occasions. For instance, in its remarks to the Czech Republic, the Committee has urged domestic authorities to 94 CERD Committee, Concluding Observations on Saudi Arabia UN Doc CERD/C/62/CO/8 (2 June 2003) para 11; See also CERD Committee, Concluding Observations on Nepal UN Doc CERD/C/304/ Add108 (1 May 2001) para 10. 95 See the Alternative Report on the Compliance with the Convention on the Rights of Persons with Disabilities submitted by the Peruvian National Confederation of People with Disabilities, available at: . 96 On this point, see The European Union Agency for Fundamental Rights, The Right to Political Participation of Persons with Mental Health Problems and Persons with Intellectual Disabilities (Publications Office of the European Union 2013); see also European Union Agency for Fundamental Rights, The Right to Political Participation of Persons with Disabilities: Human Rights Indicators (Publications Office of the European Union 2014). 97 United Nations, Standard Rules on the Equalization of Opportunities for Persons with Disabilities UNGA Res 48/96, annex (20 December 1993).
broderick
122
General Obligations
mainstream a disability perspective in existing policies related to protection from violence, abuse and exploitation.98 With respect to the obligation to ensure protection against multiple discrimination, as contained in article 6 of the Convention, the Committee has recommended that states parties should mainstream disability in all legislation and policies on gender equality and that a gender perspective should be mainstreamed in all legislation and policies on disability rights.99 Notably, the Committee has also recommended that states parties ensure that CRPD rights are mainstreamed in the national implementation and monitoring of the 2030 Agenda for Sustainable Development and the Sustainable Development Goals and that those processes be undertaken in close cooperation with organizations of persons with disabilities.100
4.4 Paragraph 1(d) Paragraph 4(1)(d) of the Convention establishes the negative obligation, according to which states must refrain from engaging in any act or practice that is inconsistent with the CRPD. This is reflective of the obligation contained in article 26 of the Vienna Convention on the Law of Treaties that ‘every treaty in force is binding on the parties and must be performed by them in good faith’.
4.4.1 Public Authorities and Institutions In addition to the foregoing negative obligation, there is also a positive obligation incumbent on states parties under paragraph 4(1)(d) CRPD to ensure that public authorities and institutions act in conformity with the Convention. There is no definition of the scope of ‘public authorities and institutions’ contained in the Convention, as this definition is meant to be defined at the domestic level. The wide reach of the CRPD is evident in this provision, by virtue of the fact that all public authorities and institutions will have to comply with the specific obligations laid down in each of the substantive provisions of the Convention. This will include, for instance, the specifically enumerated obligation to employ persons with disabilities in the public sector, set out in article 27(1)(g) CRPD and the obligation to ensure access by persons with disabilities to public housing programmes, contained in article 28(2) (d) CRPD. In addition, public authorities and institutions will be subject to the far- reaching, overarching obligations imposed on all state (and non-state) actors under the Convention, most notably the duty to provide reasonable accommodation and the accessibility obligation.
4.5 Paragraph 1(e) Paragraph 4(1)(e) CRPD is modelled on article 2(e) CEDAW.101 It makes clear that states parties are required not only to ensure that discrimination against persons with disabilities 98 CRPD Committee, Concluding Observations on Czech Republic UN Doc CRPD/C/CZE/CO/1 (15 May 2015) para 35. 99 CRPD Committee, Concluding Observations on Slovakia UN Doc CRPD/C/SVK/CO/1 (17 May 2016) para 22. 100 CRPD Committee, Concluding Observations on Italy UN Doc CRPD/C/ITA/CO/1 (6 October 2016) para 80; see also CRPD Committee, Concluding Observations on Slovakia UN Doc CRPD/C/SVK/ CO/1 (17 May 2016) para 35. 101 Art 2(e) CEDAW requires states parties to take all appropriate measures to eliminate discrimination against women by any person, organisation or enterprise.
broderick
Article 4
123
by the state and its organs is prohibited, but also to ensure that the prohibition of discrimination is extended to the private sphere. This illustrates, once again, the wide reach of the CRPD, whereby discriminatory acts against a disabled person by a private employer or private service provider (transport providers, internet providers, shops, banks), among others, are covered by the Convention’s material scope.102 While enforcement mechanisms for international human rights law103 address themselves solely to states, the doctrine of horizontal application of human rights law has developed, whereby human rights obligations have been extended to non-state actors in certain circumstances104—in other words, a violation of a human right by a private entity against an individual or another private entity can be deemed to constitute a breach of a given state’s obligations under international human rights law. Several cases taken before international mechanisms supervising human rights norms provide clear indications that state responsibility for the actions of private or non-state actors is being established.105 Many CRPD obligations can only be fulfilled by states parties where the obligations are ‘passed on’ in some shape or form to non-state actors.106 The CRPD contains explicit references to private actors in articles 9(2)(b) on accessibility, 21(c) on freedom of information and expression, 25(d) on health, and 27(1)(h) on employment. States parties must exercise due diligence with regard to the obligation to protect against disability-based discrimination in the exercise of those, and all of the rights, contained in the Convention. The CESCR has underlined the importance of the regulation of discrimination in the private sphere in the context of persons with disabilities in its General Comment No 5 (1994). The Committee has emphasized the ‘obligation to protect’, which is incumbent on states, namely that states are required to ensure that the enjoyment of rights by persons with disabilities is not hampered by third-party actors in the private sphere. The Committee states that ‘it is essential that private employers, private suppliers of goods and services, and other non-public entities be subject to both non-discrimination and equality norms in relation to persons with disabilities’.107 Frederic Mégret argues furthermore that
102 In addition, discriminatory conduct by one private individual against another arguably falls within the sphere of responsibility of states parties to the CRPD. In practice, this latter form of discrimination will be difficult to regulate but would presumably include the establishment of effective remedies and sanctions in private or criminal law, as appropriate, to deter discriminatory acts by private individuals; Broderick (n 62) 103. 103 With the exception of international criminal law. 104 On the human rights obligations of non-state actors, see Ilias Bantekas and Lutz Oette, International Human Rights Law and Practice (2nd edn, CUP 2016) 761–83; Andrew Clapham, Human Rights Obligations of Non-State Actors (OUP 2006); see further Andrew Clapham, Human Rights and Non-State Actors (Edward Elgar Publishing 2013); see also Phillip Alston, Non-State Actors and Human Rights (OUP 2004). 105 See the comments of the Inter-American Court of Human Rights in the case of Velásquez Rodríguez v Honduras, Inter-American Court of Human Rights (Ser C) No 4 (1988) para 172: ‘An illegal act which violates human rights and which is initially not directly imputable to a State (for example, because it is the act of a private person or because the person responsible has not been identified) can lead to the international responsibility of the State, not because of the act itself, but because of the lack of due diligence to prevent the violation or to respond to it as required by the [American Convention on Human Rights]’. Respondent states have also been held responsible by the European Court of Human Rights in certain circumstances for failure to prevent violations of human rights by private actors. [See eg X v Netherlands, application no 8978/80 (1985) and A v United Kingdom, application no 25599/94 (1988).] 106 See Lisa Waddington, ‘Implications of the CRPD for the Private Sector: National Disability Legislation and Strategies and Access to, and Supply of, Goods and Services’ (Conference presentation), available at: . 107 CESCR, General Comment No 5 on Persons with disabilities UN Doc E/1995/22 (9 December 1994) para 11.
broderick
124
General Obligations
‘state involvement in preventing negative encroachments occurring in the private sphere covers an ‘important dimension of the experience of persons with disabilities’.108 The prohibition of discrimination in the private sphere can also be found in article 2(1)(d) CERD. Wouter Vandenhole points to the fact that the CERD Committee ‘has emphasised the importance of adequately prohibiting and penalising acts of discrimination, whether they are committed by individuals or associations’.109 The CESCR has acknowledged that if states fall short of the obligation to remedy discrimination in the private sphere, then: The ability of persons with disabilities to participate in the mainstream of community activities and to realize their full potential as active members of society will be severely and often arbitrarily constrained.110
Since many of the fields covered by the CRPD, such as employment, accessibility, health, public transport and access to information involve private actors, the Office of the High Commission on Human Rights (OHCHR) advises states to ‘seek active collaboration with the non-state sector, including by increasing cooperation with chambers of commerce, labour unions, private school federations and religious institutions, among others’.111 In that regard, states parties to the CRPD should provide ‘technical assistance, guidelines and information, in particular on reasonable accommodation, accessibility and universal design’ as this ‘is crucial to advance[ing] equality and to reduc[ing] dependency on legal actions to enforce rights’.112 In the context of accessibility of facilities, the CRPD Committee has delivered a decision in Nyusti & Takacs v Hungary113 concerning a claim that the state party’s authorities had failed to eliminate discrimination on the ground of disability by a private credit institution, and had, furthermore, failed to ensure that persons with visual impairments had unimpeded access to the services provided by ATMs on an equal basis with other clients.114 In terms of the application of the non-discrimination principle, it is important to distinguish between existing barriers to accessibility and new or emerging barriers. States parties to the Convention will not be required to make the existing environment, information and communications systems, as well as goods and services accessible overnight. The Committee has stated, in its General Comment 108 Frederic Mégret, ‘The Disabilities Convention: Towards a Holistic Concept of Rights’ (2008) 12 The International Journal of Human Rights 261, 266. 109 CERD Committee, Concluding Observations on Liberia UN Doc A/56/18 (2001) para 434 and Concluding Observations on Ukraine UN Doc A/56/18 (2001) para 369 (cited by Wouter Vandenhole, Non- Discrimination and Equality in the View of the UN Human Rights Treaty Bodies (Intersentia 2005) 193). 110 ibid 59. 111 OHCHR, ‘Equality and non-discrimination under Article 5 of the Convention on the Rights of Persons with Disabilities’ UN Doc A/HRC/34/26 (9 December 2016) para 17. 112 ibid. 113 CRPD Committee, Individual Communication taken by Szilvia Nyusti and Péter Takács (represented by counsel, Tamás Fazekas, Hungarian Helsinki Committee), Communication No 1/2010 UN Doc CRPD/ C/9/D/1/2010 (21 June 2013). 114 The Committee was of the view that the state party in question had failed to fulfil its obligations under Art 9, para 2(b) CRPD, which requires States to ensure that private entities that offer facilities and services which are open or provided to the public take into account all aspects of accessibility for persons with disabilities. The Committee recommended that the State should remedy the lack of accessibility for the authors to the banking card services provided by the ATMs operated by OTP. The Committee also recommended that the State should take measures to prevent similar violations in the future, including by establishing minimum standards for the accessibility of banking services provided by private financial institutions for persons with visual and other types of impairment. Finally, the Committee held that the State should also ensure that all newly procured ATMs and other banking services are fully accessible for persons with disabilities.
broderick
Article 4
125
No 2 on accessibility that barriers inhibiting access to existing objects, facilities, goods, and services aimed at or open to the public shall be removed gradually in a systematic and, more importantly, continuously monitored manner, with the aim of achieving full accessibility.115 However, states parties should not create new barriers to the accessibility of disabled persons and should, furthermore, monitor the emergence of new barriers in the private sphere.116 Failure to do so may amount to discrimination, according to the CRPD Committee,117 and it is this aspect that is relevant in terms of states’ obligations under article 4(1)(e).
4.6 Paragraph 1(f) The wording of paragraph 4(1)(f ) CRPD seems to give states considerable leeway concerning implementation.118 While the obligation ‘to undertake’ is considerably stronger than that of simply promoting research and development of universally designed goods, services, equipment and facilities, the wording of the paragraph leaves a margin of appreciation to choose whether to undertake or promote research and development in the context of universal design. As outlined above, the obligation ‘to undertake’ research and development related to universal design falls within the duty to fulfil the rights of persons with disabilities, and the obligation ‘to promote’ requires education and awareness- raising. The CRPD Committee has stated that ‘awareness-raising should promote the application of universal design and the idea that designing and building in an accessible way from the earliest stages is cost-effective and economical’.119 Additionally, the Committee has stated that ‘awareness-raising should be carried out in cooperation with persons with disabilities, their representative organizations and technical experts’.120 According to article 2 of the Convention, the aim of universal design is to ensure the ‘design of products, environments, programmes and services to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design’. The general obligation to universally design structures contained in article 4(1)(f ) is part of the holistic human rights-based approach to disability, which seeks to ensure widespread structural change in society and increased participation and inclusion for persons with disabilities. In practice, the development of universally designed structures necessitates taking into account the seven key principles of universal design:121 ‘Equitable design’ (design that is useful and marketable to people with diverse abilities); flexible in use (accommodating a wide range of individual preferences and abilities); simple and intuitive (easy 115 CRPD Committee, General Comment No 2 on accessibility UN Doc CRPD/C/GC/2 (22 May 2014) para 14. 116 ibid para 31. 117 ibid: ‘As a minimum, the following situations in which lack of accessibility has prevented a person with disabilities from accessing a service or facility open to the public should be considered as prohibited acts of disability-based discrimination: [emphasis added]: Where the service or facility was established after relevant accessibility standards were introduced; and where access could have been granted to the facility or service (when it came into existence) through reasonable accommodation’. 118 Notably, the first draft of this paragraph contained only the obligation to ‘promote’—see draft Art 4, fn 21, available at: . However, the wording was strengthened somewhat by the addition of the obligation to ‘undertake’ following a suggestion of the Working Group to the Ad Hoc Committee: UN Doc A/AC265/2004/WG/1 (27 January 2004). 119 120 CRPD Committee (n 115) para 35. ibid. 121 The Seven Principles of Universal Design were developed in 1997 by a working group of architects, product designers, engineers, and environmental design researchers, led by the late Ronald Mace at North Carolina State University.
broderick
126
General Obligations
to understand); perceptible information (communicating necessary information effectively to the user, regardless of ambient conditions or the user’s sensory abilities); tolerance for error (minimising hazards and the adverse consequences of accidental or unintended actions); and design of appropriate size and space (for reach, manipulation and use, regardless of mobility and other factors). Although the obligation to universally design products is not the same as the duty to provide reasonable accommodations, there is a clear link between the two duties. The reasonable accommodation duty usually requires the adaptation of structures in an individualized manner at the request of a person with a disability. The objective of universal design is to ensure maximum accessibility for all individuals (persons with disabilities and non-disabled individuals), regardless of their type of impairment, age, etc. It is based on the idea that societal structures should ‘benefit all, not merely accommodate the few’.122 Universal design should reduce the need for individualized measures, such as reasonable accommodations. However, article 2 CPRD also states that the concept of universal design does not exclude assistive devices for particular groups of persons with disabilities, where this is needed. In that regard, it is notable that the CRPD Committee has recommended the provision of assistive technology by states parties in some of its concluding observations.123 The concept of universal design evolved from accessible design features, and it is therefore linked to the overall concept of accessibility, but it goes further in requiring consideration of the whole spectrum of human diversity—from persons with disabilities to older people, parents and children, among others. In its General Comment No 2 on accessibility, the CRPD Committee has drawn attention to the fact that implementation of the Convention’s accessibility obligations under article 9 should be carried out in accordance with the principle of universal design contained in the Convention. The Committee also observes the fact that ‘the strict application of universal design to all new goods, products, facilities, technologies and services should ensure full, equal and unrestricted access for all potential consumers, including persons with disabilities, in a way that takes full account of their inherent dignity and diversity’.124 The CRPD Committee has, furthermore, stated that domestic legislation ‘should incorporate, and be based on, the principle of universal design’.125 There are a handful of examples of states parties to the CRPD that take account of the universal design duty in their laws and policies. Some states parties have also linked the duty itself to the non- discrimination norm. For instance, Norway’s Anti-Discrimination and Accessibility Act126 contains the obligation of universal design, breach of which is a form of discrimination under the Act, pursuant to section 13.127 In addition, Spain’s National Accessibility Plan 122 Richard Jackson, ‘National Centre on Accessing the General Curriculum, Curriculum Access for Students with Low-Incidence Disabilities: The Promise of Universal Design for Learning (2011) 2, available at: . 123 See eg CRPD Committee, Concluding Observations on Azerbaijan, UN Doc CRPD/C/AZE/CO/1 (12 May 2014) para 41(a); see also CRPD Committee, Concluding Observations on Belgium UN Doc CRPD/C/ BEL/CO/1 (28 October 2014) para 37. 124 125 CRPD Committee (n 115) para 15. ibid para 28. 126 Norway, Act relating to a prohibition against discrimination on the basis of disability (the Anti- Discrimination and Accessibility Act) (2008), available at: . Norway’s Anti-Discrimination and Accessibility Act is a disability-specific nationwide non-discrimination act which contains the legally enforceable standard of universal design. 127 Section 12 of the Anti-Discrimination and Accessibility Act.
broderick
Article 4
127
was created in the context of Act 51/2003 on Equal Opportunities, Non-discrimination and Universal Access for People with Disabilities to enable the Spanish Government to foster implementation of the legislation. Activities considered under the plan include training on accessibility and ‘Design for All’ in universities, promotion of research in this area and co-operation between different actors.128
4.7 Paragraph 1(g) The obligation to ‘undertake or promote’ research and development of, and to promote, the availability and use of new technologies accords quite a considerable margin for states in implementation, similar to the obligation contained in paragraph 4(1)(f ) of the Convention, outlined above. The obligation contained in article 4(1)(g) must be read in conjunction with states parties’ obligations throughout the Convention’s substantive provisions. In the first instance, article 9(g) requires states parties to promote access for persons with disabilities to new information and communications technologies and systems, including the Internet. Furthermore, under article 9(h), states parties have undertaken to promote the design, development, production and distribution of accessible information and communications technologies (ICT) and systems at an early stage, so that these technologies and systems become accessible at minimum cost. This obligation to take into account affordability overlaps with General Obligation 4(1)(g), which requires states parties to undertake or promote research and development, and to promote the availability and use, of new technologies suitable for persons with disabilities, giving priority to technologies, including information and communications technologies, at an affordable cost. With regard to this cost dimension, the CRPD Committee has stated that accessibility of information and communication, including ICT, should be ‘achieved from the outset because subsequent adaptations to the Internet and ICT may increase costs’.129 According to the Committee, it is ‘therefore more economical to incorporate mandatory ICT accessibility features from the earliest stages of design and production’.130 The general obligation contained in article 4(1)(g) shares symmetries with article 20(b) CRPD (on personal mobility), under which states have undertaken to facilitate access, at an affordable cost, for persons with disabilities to quality mobility aids, devices, assistive technologies, and forms of live assistance and intermediaries. In addition, article 26 CRPD (on habilitation and rehabilitation) requires states parties to promote ‘the availability, knowledge and use of assistive devices and technologies, designed for persons with disabilities, as they relate to habilitation and rehabilitation’.131 In the framework of international cooperation, article 32(1)(d) CRPD requires states parties: To provide, as appropriate, technical and economic assistance, including by facilitating access to, and sharing of, accessible and assistive technologies, and through the transfer of technologies.132
128 Søren Ginnerup in co-operation with the Committee of Experts on Universal Design, ‘Achieving full participation through Universal Design’ (Council of Europe Publishing, 2009), available at: . 129 130 131 CRPD Committee (n 115) para 15. ibid. Art 26 CRPD. 132 Art 32(1)(d) CRPD.
broderick
128
General Obligations
The CRPD Committee maintains that measures taken to ensure international cooperation under article 32 of the Convention should constitute ‘a significant tool in the promotion of accessibility and universal design’ and recommends that international development agencies recognize the significance of supporting projects aimed at improving ICT and other access infrastructure’.133 The Committee also points to the fact that ‘international cooperation should be used not merely to invest in accessible goods, products and services, but also to foster the exchange of know-how and information on good practice in achieving accessibility in ways that will make tangible changes that can improve the lives of millions of persons with disabilities worldwide’.134 In this connection, it is interesting to consider the interaction between the relevant CRPD norms and the Marrakesh Treaty (MVT)135 (2013).136 The primary objective of the MVT is to create a set of mandatory limitations and exceptions to copyright rules in order to enable reproduction and distribution, and increase the availability, of published works in accessible formats for the benefit of blind, visually impaired and otherwise print disabled individuals (VIPs). The goals of the MVT intersect somewhat with the CRPD, which establishes the right of all persons with disabilities to have access to information in accessible formats and technologies on an equal basis and without discrimination.137 and the right to take part in cultural life and have access to cultural materials on an equal basis with others.138 Article 30(3) CRPD imposes an obligation on states parties to take appropriate measures to ensure, in accordance with international law, that intellectual property rights, such as copyright protection, do not constitute an unreasonable or discriminatory barrier to access by persons with disabilities to cultural materials in accessible formats.139 A report commissioned by the European Parliament’s Policy Department for Citizens’ Rights and Constitutional Affairs, upon request by the Committee on Petitions (PETI), recommends that states: Establish a mechanism to ensure that the objectives of the Marrakesh Treaty are actually achieved in practice. To this end, Member States could rely upon Art. 33 CRPD independent monitoring bodies and their national IP [intellectual property] Office to comply with their duty under Art. 10(1) Marrakesh Treaty [namely, the obligation ‘to adopt measures necessary to ensure application of this Treaty’.]140
Other scholars claim that the Marrakesh Treaty provides a concrete illustration of an ‘integrationist’ approach, which ‘employs the legal policy tools of copyright law to advance human rights ends’.141 In this way, the symmetries with the CRPD norms above are evident. 134 CRPD Committee (n 115) para 47. ibid. The MVT is a recent addition to the existing body of international copyright treaties administered by the World Intellectual Property Organisation (WIPO). 136 Marrakesh Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired, or Otherwise Print Disabled (MVT) (2013). 137 138 Art 21 CRPD. Art 30 CRPD. 139 César Ramirez-Montes, The Marrakesh Treaty: Study for the PETI Committee, commissioned by the European Parliament Policy Department for Citizens’ Rights and Constitutional Affairs (European Union 2016). 140 ibid 58. 141 ibid 56, citing Laurence Helfer, ‘Human Rights and Intellectual Property: Mapping an Evolving and Contested Relationship’ in Rochelle Cooper Dreyfuss and Justine Pila, The Oxford Handbook of Intellectual Property Laws (OUP forthcoming), available at: . 133 135
broderick
Article 4
129
4.8 Paragraph 1(h) The obligation ‘to provide’ accessible information to persons with disabilities regarding mobility aids, devices and assistive technologies, including new technologies, as well as other forms of assistance, support services and facilities imposes a stronger positive obligation on states than that contained in paragraphs 1(f ) and 1(g) above, since there is no discretion left to states parties. This requires states parties to ensure that concrete policies are drawn up enshrining the relevant obligation to ensure provision of accessible information on accessible technologies, assistance etc at the domestic level. It will also require that states parties formulate policies ensuring that measures are put in place to monitor the provision of accessible information to persons with disabilities in the private sector, where a large proportion of these technologies will be produced and assistance etc will be provided. The obligation contained in paragraph 4(1)(h) is clearly linked to that contained in paragraph 4(1)(g) above, since promoting the availability and use of new technologies will certainly require the provision of accessible information on such technologies. The provision of accessible information is important for all persons with disabilities, but the CRPD Committee points specifically to the fact that: Persons with intellectual and psychosocial disabilities, as well as deaf-blind persons, face barriers when attempting to access information and communication owing to a lack of easy-to-read formats and augmentative and alternative modes of communication.142
The requirement in article 4(1)(h) to provide accessible information on new technologies, etc must be read in conjunction with the various sub-paragraphs of article 9 CRPD. More specifically, paragraph 2(d) of article 9 provides that buildings and other places open to the public should have signage in Braille and in easy-to-read and understand forms. Without such signage, accessible information and support services may not become a reality for many persons with disabilities. Article 9(2)(f ) is also relevant in this context, since it requires states parties to promote other appropriate forms of assistance and support to persons with disabilities to ensure their access to information. Moreover, article 21(a) of the Convention ties in with General Obligation 4(1)(h), as it obliges states parties to take all appropriate measures to ensure that persons with disabilities can exercise the right to freedom of expression and opinion, including access to information. In that regard, states parties must ensure that information intended for the general public is provided to persons with disabilities in accessible formats and technologies appropriate to different kinds of disabilities, in a timely manner and without additional cost.
4.9 Paragraph 1(i) 4.9.1 ‘Training of professionals and staff working with persons with disabilities’ States parties are required, pursuant to article 4(1)(i) of the Convention, to promote the training of professionals and staff working with persons with disabilities in order to ensure that such professionals can provide the assistance and services guaranteed by CRPD rights in a disability-sensitive manner. While all persons with disabilities face barriers related to the lack of adequate training of professionals, the CRPD Committee has specifically highlighted the fact that ‘persons with intellectual and psychosocial disabilities, CRPD Committee (n 115) para 7.
142
broderick
130
General Obligations
as well as deaf-blind persons, face barriers when attempting to access services due to prejudices and a lack of adequate training of the staff providing those services’.143 As well as featuring in the general obligations of the Convention, the requirement to ensure training of professionals and staff is replicated in the substantive provisions of the CRPD. For instance, article 8(2)(d) requires states parties to promote training programmes focused on creating awareness regarding persons with disabilities and their rights. Furthermore, in its General Comment No 2, the CRPD Committee remarks on training obligations under article 9(2)(c) of the Convention, when it observes that ‘since a lack of accessibility is often the result of insufficient awareness and technical know-how, article 9 requires that states parties provide training to all stakeholders on accessibility for persons with disabilities’.144 In the context of implementing article 9 of the Convention, the Committee has also recommended training for judges and other judicial officials dealing with accessibility issues in the case of Nyusti & Takacs v Hungary.145 In order to ensure the practical application of accessibility standards, the Committee has stated that it is also important to put in place training and monitoring systems for various other groups, including ‘the authorities that issue building permits, broadcasting boards and ICT licences, engineers, designers, architects, urban planners, transport authorities, service providers, members of the academic community and persons with disabilities and their organizations’.146 The reference to training of staff and professionals is replicated in article 20(c) of the Convention, pursuant to which states are mandated to ensure training for specialist staff working with persons with disabilities on personal mobility issues. Furthermore, under the terms of article 24(4) CRPD, states are required to train professionals and staff who work at all levels of education. Such training must incorporate disability awareness and the use of appropriate augmentative and alternative modes, means and formats of communication, educational techniques and materials to support persons with disabilities. The CRPD Committee asserts that ‘the core content of teacher training’ must address: A basic understanding of human diversity, growth and development, the human rights model of disability and inclusive pedagogy that enables teachers to identify students’ functional abilities (strengths, abilities and learning styles) to ensure their participation in inclusive educational environments.147
Article 25(d) CRPD also requires training of professionals in the context of healthcare provision, while article 26(2) of the Convention requires states parties ‘to promote the development of initial and continuing training for professionals and staff working in habilitation and rehabilitation services’. Training of professionals is also important in the context of the provision of remedies and sanctions. In its concluding observations to several states parties, the CRPD Committee has recommended the provision of training to all departments dealing with sanctions and remedies under the CRPD in order to ensure that persons with disabilities have information on lodging complaints and seeking remedies.148 144 145 ibid. ibid para 9. CRPD Committee (n 113) para 10(2)(b). CRPD Committee (n 115) para 19. 147 CRPD Committee, General Comment No 4 on the right to inclusive education (2016) UN Doc CRPD/C/GC/4 (2 September 2016) para 71. 148 See CRPD Committee, Concluding Observations on Italy UN Doc CRPD/C/ITA/CO/1 (6 October 2016) para 8. 143 146
broderick
Article 4
131
5. Paragraph 2 5.1 Progressive Realization In its preamble, the CRPD reaffirms ‘the universality, indivisibility, interdependence and interrelatedness of all human rights and fundamental freedoms’. Nonetheless, article 4(2) CRPD retains the traditional distinction between rights that are subject to immediate implementation (civil and political rights) and those that are to be realized progressively (economic, social and cultural rights).149 Article 4(2) recognizes that states are allowed to realize socio-economic rights progressively, with a view to achieving their full realization over time. The OHCHR has stated that progressive realization is ‘a practical device that acknowledge(s) the real world challenges’ and ‘helps to avoid overburdening states, employers and other duty-bearers’.150 Progressive realization clauses are enshrined in numerous international human rights treaties. Article 2 ICESCR and article 4 CRC require states to realize progressively the rights contained therein. Article 23(2) CRC refers specifically to the progressive realization of rights relating to children with disabilities. Some guidance can be drawn from the remarks of the CESCR on the duty to progressively realize human rights. The CESCR has stated that progressive realization ‘should not be misinterpreted as depriving the obligation [to give effect to rights] of all meaningful content’; rather, it imposes an obligation on states to move ‘as expeditiously and effectively as possible’ towards the goal of full realization of rights.151 The Committee has elaborated on this by stating that steps taken by states should be ‘deliberate, concrete and targeted’ towards the full realization of rights.152 The OHCHR has provided several examples of steps that might be deemed sufficient to meet the foregoing obligation. In the first instance, states should assess the state of enjoyment of economic, social and cultural rights, including by ensuring ‘adequate mechanisms to collect and assess relevant and suitably disaggregated data’. Secondly, states ‘should formulate strategies and plans, incorporating indicators and time-bound targets’, which should be ‘realistic, achievable and designed to assess progress in the realisation of these rights’, and they should regularly monitor and assess progress made in the implementation of national plans and strategies. In the third instance, states ‘should adopt the necessary laws and policies, and make adequate funds available to put the plans and strategies into practice’. Lastly, states should establish ‘grievance mechanisms so that individuals can complain if the state is not meeting its responsibilities’.153
149 The traditional dichotomy of the two sets of rights has been increasingly eroded in scholarly discourse and it is now acknowledged that both sets of rights may give rise to positive duties—see eg Sandra Fredman, Human Rights Transformed: Positive Rights and Positive Duties (OUP 2008). The CRPD itself blurs the dividing lines between civil and political rights and economic, social and cultural rights by incorporating immediately realizable reasonable accommodation duties into many of the Convention’s socio-economic rights. In fact, the Convention blends civil and political rights with economic, social and cultural rights, not only within its overall structure, but also within individual articles. 150 Office of the High Commissioner of Human Rights, From Vision to Action: The Road to Implementation of the Convention (2007) 5, available at: . 151 152 CESCR (n 85) para 9. ibid para 2. 153 Office of the High Commissioner of Human Rights, Frequently Asked Questions on Economic, Social and Cultural Rights: Factsheet 33, 16, available at: .
broderick
132
General Obligations
The CRPD Committee has not commented extensively on the obligation to progressively realize CRPD rights and sometimes oversteps the mark on obligations of progressive versus immediate implementation.154 Nonetheless, the Committee has made some cursory remarks on the progressive realization duty in the context of article 24 (the right to inclusive education). According to the Committee, ‘progressive realization must be read in conjunction with the overall objective of the Convention’. In that regard, ‘states parties are encouraged to redefine budgetary allocations for education, including by transferring part of their budgets to the development of inclusive education’, and the Committee has stated that ‘any deliberately retrogressive measures [ . . . ] must not disproportionately target learners with disabilities at any level of education’.155 In addition, the CRPD Committee has noted that ‘progressive realization does not prejudice those obligations that are immediately applicable’.156 Therefore, states parties should implement the following core rights with immediate effect: (a) Non-discrimination: States must urgently take steps to remove all legal, administrative and other forms of discrimination impeding the right of access to inclusive education; (b) Reasonable accommodation: States must ensure non-exclusion from education for persons with disabilities; and (c) Compulsory, free primary education available to all: The Committee urges states parties to ensure access to, and completion of, quality education for all children and youth. This should include at least twelve years of free, publicly funded, inclusive and equitable quality primary and secondary education, of which at least nine years are compulsory, as well as access to quality education for out-of-school children and youth through a range of modalities, as outlined in the Education 2030 Framework for Action.157
5.2 Maximum of Available Resources States parties to the CRPD are required to invest the maximum of available resources in ensuring the full realization of socio-economic rights. Since the CRPD Committee has not yet commented to a large degree on the obligation to allocate the maximum use of available resources, some guidance will be drawn from the comments of the CESCR. The CESCR maintains that the ‘availability of resources,’ although an important qualifier to the obligation to take steps, ‘does not alter the immediacy of the obligation, nor can resource constraints alone justify inaction’.158 The Committee has already emphasized the fact that even in times of severe resource constraints, states parties must protect the most disadvantaged and marginalized members or groups of society by adopting relatively low-cost targeted programmes.159 It is well recognized that the obligation to invest the maximum of available resources refers to both the resources existing within a state and those available from the international community through international cooperation and 154 Indeed, the CRPD Committee sometimes does not draw a clear enough line between obligations of immediate effect and progressively realisable obligations; see eg para 30 of General Comment No 1 on the Right to Equal Recognition before the Law UN Doc CRPD/C/GC/1 (19 May 2014). 155 156 157 CRPD Committee (n 147) para 40. ibid. ibid. 158 CESCR, ‘Statement: An evaluation of the obligation to take steps to the “Maximum of Available Resources” Under an Optional Protocol to the Covenant’, UN Doc E/C12/2007/1 (21 September 2007) para 4. 159 ibid.
broderick
Article 4
133
assistance.160 The obligation to seek assistance, where needed, through the framework of international cooperation is provided for specifically in article 4(2) CRPD. This will be a particularly important aspect of the progressive realization of rights in developing countries that are parties to the CRPD. Notwithstanding existing guidance on the concept of allocating the maximum of a state’s available resources, the definition of the obligation remains vague, particularly in terms of priority-setting. Benchmarks have been developed to help states understand the duty to realize rights to the maximum of available resources. In her summary of a report related to the duty, Sandra Fredman has stated that three elements of government appropriations are highlighted as being capable of concrete assessment, namely: (a) the sufficiency of government spending/investment; (b) the equity of expenditure patterns; and (c) the efficiency of expenditure.161 Fredman explains that ‘sufficiency is assessed by comparing actual expenditure with a benchmark figure, such as the proportion of [Gross Domestic Product], or of total government spending’. Also of importance, she asserts, is ‘the way in which budgeting has changed over time’. If government spending on realization of a right has been dropping, relative to GDP or other government spending, this ‘strongly suggests that there are available resources but the duty has not been prioritized’. Regarding the second criterion of equity, Fredman states that ‘if spending is inequitable between genders, classes, regions or ethnic groupings, the government would be in breach of its duty’. Fredman claims that while efficiency of spending is more difficult to assess, ‘where a sum has been clearly budgeted and not used, a very strong argument can be made to compel a government to fulfil its obligations’.162 While it has been acknowledged that budget analysis is a ‘powerful tool for understanding government priorities’,163 many questions remain unanswered with regard to ‘how effectively or efficiently the money is being spent, or whether the resources allocated are reaching their intended purpose’.164 The remarks of de Beco reflect this criticism. He points to the fact that the progressive realization of socio-economic rights remains problematic on account of both timing and prioritisation issues, in particular which criteria will be applied ‘in determining whether a state’s priorities are acceptable’ or the ‘best option’ in the context of the maximum of available resources.165 In its 2007 Statement, entitled ‘An Evaluation of the Obligation to Take Steps to the “Maximum of Available Resources” Under an Optional Protocol to the Covenant’,166 the CESCR laid out general considerations which it deems relevant to assessing whether measures taken by states are ‘reasonable or adequate’ and all of those criteria can be
CESCR (n 85) 13. Sandra Fredman, Human Rights Transformed: Positive Rights and Positive Duties (Oxford University Press 2008), 82, citing Helena Hofbauer, Ann Blyberg, and Warren Krafchik ‘Dignity Counts: A Guide to Using Budget Analysis to Advance Human Rights’, (Fundar, IBP, IHRIP) (2004): . 162 ibid. 163 Helena Hofbauer, Ann Blyberg, and Warren Krafchik. ‘Dignity Counts: A Guide to Using Budget Analysis to Advance Human Rights, (Fundar, IBP, IHRIP, 2004)’ 36, available at: . 164 ibid. 165 Gauthier de Beco, ‘Interplay between Human Rights and Development the Other Way Round: The Emerging Use of Quantitative Tools for Measuring the Progressive Realisation of Economic, Social and Cultural Rights’ Human Rights and International Legal Discourse 4 (2010): 265–87. 166 CESCR (n 158) para 8. 160 161
broderick
134
General Obligations
deemed relevant to a determination of the reasonableness of state action in the context of the progressive realization of CRPD rights: (a) The extent to which the measures taken were deliberate, concrete and targeted towards the fulfilment of economic, social and cultural rights; (b) Whether the state party exercised its discretion in a non-discriminatory and non- arbitrary manner; (c) Whether the state party’s decision (not) to allocate available resources is in accordance with international human rights standards; (d) Where several policy options are available, whether the state party adopts the option that least restricts Covenant rights; (e) The time frame in which the steps were taken; and (f ) Whether the steps had taken into account the precarious situation of disadvantaged and marginalized individuals or groups and, whether they were non-discriminatory, prioritising grave situations or situations of risk. In the context of persons with disabilities, the CESCR has stated that the obligation of states to promote progressive realization of the relevant rights to the maximum of a state’s available resources ‘clearly requires governments to do much more than merely abstain from taking measures which might have a negative impact on persons with disabilities’. Rather: The obligation in the case of such a vulnerable and disadvantaged group is to take positive action to reduce structural disadvantages and to give appropriate preferential treatment to people with disabilities in order to achieve the objectives of full participation and equality within society for all persons with disabilities.167
As the Committee acknowledges, ‘this almost invariably means that additional resources will need to be made available for this purpose and that a wide range of specially tailored measures will be required’.168 In this context, the CRPD Committee has advised states parties to regularly evaluate domestic budgets and to ensure that their use of European structural and investment funds is compliant with the CRPD, with a view to guaranteeing that the maximum available resources are being used for the realization of the rights of persons with disabilities, in accordance with article 4 (2) of the Convention.169
6. Paragraph 3 Article 4(3) of the CRPD is a crucial provision in the context of the Convention as a whole. It requires ‘close consultation with, and active involvement of, persons with disabilities, through their representative organisations, in the development and implementation of legislation and policies and in all decision-making processes concerning issues relating to persons with disabilities’.170 The working group to the Ad Hoc Committee included twelve non-governmental organisations (‘NGOs’). Stein asserts that ‘the inclusion of NGOs at this stage was 168 CESCR (n 85) para 9. ibid. CRPD Committee, Concluding Observations on Spain UN Doc CRPD/C/ESP/CO/1 (19 October 2011) para 20. 170 Art 4(3) CRPD. 167 169
broderick
Article 4
135
unprecedented in the normal course of treaty development at the United Nations, and can be interpreted as acquiescence to NGOs’ assertion of “nothing about us without us” ’,171 the slogan adopted by the disability rights movement during the negotiating process. The final text of article 4(3) CRPD certainly reflects that slogan. Obligations under article 4(3) will be relevant in the implementation of the substantive rights contained in the Convention. This has been recognized by the CRPD Committee in various contexts, including in the development of minimum standards for all newly procured goods and services provided by private and public enterprises.172 In its concluding observations to states parties, the CRPD Committee has recommended the establishment of a permanent consultative body, which ‘effectively and meaningfully’173 consults with persons with disabilities through their representative organisations ‘in the development of all laws, policies and programmes at all levels, and within all sectors of the state’.174 The Committee has further recommended that such a body should ‘reflect the diversity of individuals’ backgrounds by ensuring that a broad range of individuals are represented, including with regard to age, sex, faith, race, sexual orientation, migrant status and impairment groups’.175 It is important not to sideline the role of children with disabilities and their representative organisations under article 4(3) (taken in conjunction with article 7 CRPD). In its concluding observations to Costa Rica, among others, the CRPD Committee has recommended the establishment of permanent consultation mechanisms with organisations of persons with disabilities, ‘respecting their autonomy and taking into account the diversity of persons with disabilities, including children and women with disabilities, and the country’s indigenous population’.176 Examples of states parties that have already sought to ensure a consultative process in implementation of disability rights and reform measures are quite plentiful.177 The Austrian Federal Disability Act (BundesbehindertenG)178 has enabled the setting up of a Federal Disability Advisory Board as a consultative body. The Board has an advisory function in all disability related law and policy-making and is comprised of seven representatives of non-governmental organizations representing persons with disabilities. Cypriot legislation179 contains similar provisions regarding consultation with persons 171 Michael Ashley Stein, ‘Disability Human Rights’ (2007) 95 California Law Review 75, 84 (fn 41); see similar comments to that effect: Mental Disability Advocacy Center, ‘Building the Architecture for Change: Guidelines on Article 33 of the UN Convention on the Rights of Persons with Disabilities’ (2011), available at: . 172 CRPD Committee (n 115) para 30. 173 CRPD Committee, Concluding Observations on Italy UN Doc CRPD/C/ITA/CO/1 (6 October 2016) para 8. 174 175 ibid. ibid. 176 CRPD Committee Concluding Observations on Costa Rica UN Doc CRPD/C/CRI/CO/1 (12 May 2014) para 10. 177 For further examples, see The Fundamental Rights Agency, DPO involvement, Indicators on political participation of persons with disabilities (2014), available at: . 178 Available at: . 179 Cyprus, The Consultation process between the Government and other Services for issues concerning Persons with Disabilities Law of 2006 (L.143 (I) /2006)(Ο περί της Διαδικασίας Διαβούλευσης Κρατικών και Άλλων Υπηρεσίων σε Θέματα που Άφορούν Άτομα με Αναπηρία Νόμος του 2006 (Ν.143(Ι)/2006)), available at: .
broderick
136
General Obligations
with disabilities. Each public department must consult with the Cyprus Confederation of Organizations of the Disabled on decisions that directly or indirectly affect persons with disabilities. The confederation has nine DPO members, including the Pancyprian Blind People’s Organization, the Pancyprian Organization for the Rehabilitation of Disabled People and Cyprus Paraplegic Association, etc.180 In Denmark, the consultation and participation of DPOs in the conduct of public affairs has been ‘formalised by means of the creation of disability councils in all local councils and at central state level’.181 It has been acknowledged that particular attention should be paid to the involvement of persons with disabilities in the establishment of national disability rights action plans and the process of state reporting before the CRPD Committee.182 Notably, the Australian government sought the views of DPOs ‘at several key stages of drafting Australia’s initial report to the CRPD Committee’.183 DPOs were invited to submit their initial views on information that they wanted to see included in the report, or issues that they felt needed to be addressed. The Australian government also invited DPOs and members of the public to submit comments on draft report and issues raised were considered in revising the report.184 Useful guidance has been provided by various actors on participation of persons with disabilities and DPOs in implementation of the Convention. For instance, the International Disability Alliance (IDA) issued a Guidance Document185 in May 2010, which contains recommendations for DPOs on how to draft parallel reports to inform and influence the CRPD Committee. Likewise, Spanish authorities organized a seminar in 2007, together with the United Nations Department of Economic and Social Affairs, which led to the Madrid Declaration. The declaration formulates recommendations to UN member states and to civil society aimed at ensuring the participation of civil society in implementation of the CRPD and in the follow-up process.186 As well as involving persons with disabilities through their representative organisations in implementation of the CRPD, it is imperative that any monitoring structures that are set up under the Convention should take into account consultation with, and active involvement of, persons with disabilities and their representative organisations. In that regard, article 4(3) CRPD must be read in conjunction with article 33 CRPD, which requires states parties to give due consideration to the establishment or designation of a coordination mechanism within government to facilitate related action in different sectors 180 Information obtained from the website of the Cyprus Confederation of Organizations of the Disabled (Κυπριακή Συνομοσπονδία Οργανώσεων Αναπήρων), available at: . 181 Information taken from The Fundamental Rights Agency (n 177). 182 Federal Public Service Social Security, The UN Convention on the Rights of Persons with Disabilities: an Integral and Integrated Approach to the Implementation of Disability Rights, Background document prepared for the international conference ‘Work Forum for the Implementation of the UN Convention on the Rights of People with Disabilities’ (18–19 November 2010, Brussels, Belgium) 48, available at: . 183 United Nations Office of the High Commissioner for Human Rights, Participation of Persons with Disabilities in Political and Public Life—Australia’s response to the Officer of the High Commissioner’s Request, available at: . 184 ibid. 185 ‘Effective Use of International Human Rights Monitoring Mechanisms to Protect the Rights of Persons with Disabilities’, available at: . 186 The Declaration can be accessed at: . Information taken from Federal Public Service Social Security (n 182).
broderick
Article 4
137
and at different levels. Article 33(3) stipulates that civil society, in particular persons with disabilities and their representative organizations, shall be involved and participate fully in the monitoring process. It is notable that Cypriot authorities have appointed the Pancyprian Council for Persons with Disabilities as the coordination mechanism within the Cypriot government to facilitate related actions in different sectors and at different levels for the implementation of the Convention. Τhe Persons with Disabilities Law187 provides that members of the Pancyprian Council for Persons with Disabilities shall be composed, inter alia, of four representatives of DPOs.188
7. Paragraph 4 7.1 Provisions which are More Conducive to the Realization of the Rights of Persons with Disabilities Article 4(4) CRPD embodies a key principle in international human rights law, the principle of non-retrogression.189 That article applies the principle of non-retrogression to the realization of the rights of persons with disabilities. There was broad support for the inclusion of such a provision during the negotiating sessions of the CRPD. Della Fina contends that through this ‘saving clause’, the Convention ‘safeguards the human rights of disabled people granted [ . . . ] both in national law and under an international treaty to which the state is bound’.190
7.2 No Restriction upon or Derogation from Under Article 4(4) CRPD, states parties are also required to ensure that there is no restriction upon, or derogation, from any of the human rights and fundamental freedoms recognized or existing in any state party to the Convention pursuant to law, conventions, regulation or custom. Article 4(4) mandates explicitly that states parties are not allowed to have restrictions upon, or derogations from the CRPD, ‘on the pretext that the Convention does not recognize such rights or freedoms or that it recognizes them to a lesser extent’.191 This sub-provision reflects similar provisions in article 5(2) ICESCR and ICCPR, respectively. According to the UN Human Rights Committee’s interpretation of article 5(2) ICCPR, no derogations to human rights treaties are allowed, ‘where such derogation would entail a breach of the state’s other international obligations, whether based on treaty or general international law’.192 187 Cyprus, Persons with disabilities Law of 2000 (127(Ι)/2000), (Ο Περί Ατόμων με Αναπηρίες Νόμος) last amended 102(I)2007, available at: . 188 Information obtained from Department for Social Inclusion of Persons with Disabilities, (Τμήμα Κοινωνικής Ενσωμάτωσης Ατόμων με Αναπηρία). 189 For more analysis of the principle of non-retrogression in international human rights law, see generally María Magdalena Sepúlveda Carmona, The Nature of the Obligations Under the International Covenant on Economic, Social and Cultural Rights, School of Human Rights Research Series, Vol 18 (Intersentia 2003) 127; see also Diane Desierto, Public Policy in International Economic Law: The ICESCR in Trade, Finance and Investment (Oxford 2015) 87–90; See further, Ben TC Warwick, ‘Socio-Economic Rights during Economic Crises: A Changes Approach to Non-Retrogression’ International and Comparative Law Quarterly 65(1) (2016) 249–66; see Committee on Economic, Social and Cultural Rights, General Comment No 3, The Nature of States Parties’ Obligations para 9. 190 191 Della Fina (n 2) 152. Art 4(4) CRPD. 192 Human Rights Committee, General Comment 29 on states of emergency (2001) UN Doc CCPR/C/ 21/Rev1/Add 11 (31 August 2001) para 9.
broderick
138
General Obligations
8. Paragraph 5: All Parts of Federal States Article 4(5) of the Convention reflects the wording contained in, among others, article 50 ICCPR.193 Article 4(5) CRPD is designed to indicate to federal states that they cannot escape their implementation obligations under the Convention by reason of their federal structure of governance. The implementation of the CRPD in federal states will be complex194 and may present difficulties, since various duties will be set out in several pieces of legislation, which may not use the same terminology. Federal states should be particularly careful to ensure consistency when they are establishing cross-cutting CRPD obligations, such as the reasonable accommodation duty, as that duty will be divided over various levels of government. Best practice in that connection has been evidenced by Belgium, where a compulsory Cooperation Agreement was adopted in 2008 by the Federal Government, the Regions and the Communities in order to ensure a common understanding of the concept of reasonable accommodation as contained in various Belgian legislative enactments and to ensure its uniform implementation throughout Belgium.195 The Agreement also establishes a monitoring mechanism, requiring each authority (at all levels of the state) to collect information on reasonable accommodation and examples of best practice. In its concluding observations, the CRPD Committee has made several remarks which ought to be borne in mind by federal states in their implementation of the CRPD. In its concluding observations to Austria, the Committee has expressed concern that the federal system of governance there has led to undue fragmentation in policy development, particularly since the Länder (regions) are the providers of social services. The Committee is of the opinion that fragmentation is most evident in the development of the National Disability Action Plan, in which the participation of the Länder was ‘intermittent and uneven,’ as well as ‘in the different definitions of disability, different accessibility standards and different protections against discrimination across the various Länder’.196 In light of the foregoing, the Committee has recalled that article 4(5) of the Convention clearly provides that ‘the administrative difficulties of a federal structure do not allow a state to avoid its obligations under the Convention’.197 The Committee has further recommended that Austria should ensure that federal and regional governments consider 193 Art 50 ICCPR states as follows: ‘The provisions of the present covenant shall extend to all parts of federal states without any limitations or exceptions.’ 194 The federal structure of the USA, for example, has caused difficulties in upholding the central government’s obligations under international law, specifically under the Consular Convention (Vienna Convention on Consular Relations, April 24, 1963, 21 UST 77, 596 UNTS 261). In three cases, the International Court of Justice (ICJ) held that the United States had violated the Convention by not allowing consular access to foreign nationals (Avena and Other Mexican Nationals (Mexico v USA), 2004 ICJ 12, 17 (March 31); the LaGrande Case (FRG v US) 2001 ICJ 446, 474 (June 27); and Vienna Convention on Consular Relations (Para v US), 1998 ICJ 248, 249 (April 9)). However, in Medellín v Texas (Medellín II) 128 S Ct 1346 (2008), the US Supreme Court declined to give binding effect to the Avena and other cases, holding that ICJ decisions under the Consular Convention are not binding federal law. 195 Protocole du 19 juillet 2007 entre l’État fédéral, la Communauté flamande, la Communauté française, la Communauté germanophone, la Région wallonne, la Région de Bruxelles- Capitale, la Commission communautaire commune, la Commission communautaire française en faveur des personnes en situation de handicap, OJ (Moniteur belge), 20 September 2007, available at: . Information taken from Waddington and Broderick (no 78) 150/151. 196 CRPD Committee, Concluding Observations on Austria, UN Doc CRPD/ C/ AUT/ CO/ 1 (13 September 2013) para 10. 197 ibid.
broderick
Article 4
139
adopting an overarching legislative framework and policy on disability, in conformity with the Convention.198 In the implementation process, federal or decentralized states must be particularly careful to ensure inclusion of persons with disabilities at all levels. In the Belgian context, the CRPD Committee notes that persons with disabilities are represented by the National Higher Council for Persons with Disabilities at the federal level. However, it has stated that it ‘regrets the absence of advisory councils in the Flemish Region and in the French and German-speaking communities’.199 The Committee has urged Belgium to establish, and allocate adequate resources to, advisory councils in all regions. These advisory councils should be closely involved in the development, implementation and monitoring of legislation and policies.200 The establishment of an effective coordination mechanism is also vital in the context of federal or decentralized states, which share responsibility with the regional or local levels for implementation of the CRPD and the development of disability rights policies. Internally, it has been asserted that: The presence of a platform which, preferably, transcends and is supported by the various levels of governance can therefore at least serve to stimulate an open and transparent disability rights policy and at best act as the coordinator of a coherent national disability rights policy.201
From the perspective of the external dimension, it has been argued that ‘a coordination mechanism is all the more necessary in federal states to act as the focal point for the international level’, in discussions with the CRPD Committee (for instance), since ‘one central point, often the federal level, will officially be [the] interlocutor even when a particular issue may concern a regional level’.202
ibid para 11. CRPD Committee, Concluding Observations on Belgium, UN Doc CRPD/C/BEL/CO/1 (28 October 2014) para 9. 200 ibid para 10. 201 Federal Public Service Social Security (n 182). 202 ibid. 198 199
broderick
Article 5 Equality and Non-Discrimination . States Parties recognize that all persons are 1 equal before and under the law and are entitled without any discrimination to the equal protection and equal benefit of the law.
. In order to promote equality and eliminate 3 discrimination, States Parties shall take all appropriate steps to ensure that reasonable accommodation is provided.
. States Parties shall prohibit all discrimin2 ation on the basis of disability and guarantee to persons with disabilities equal and effective legal protection against discrimination on all grounds.
. Specific measures which are necessary to 4 accelerate or achieve de facto equality of persons with disabilities shall not be considered discrimination under the terms of the present Convention.
1. Introduction 2. Background 3. Travaux Préparatoires 4. General Framework of Article 5 5. Paragraph 1 6. Paragraph 2 7. Paragraph 3 8. Paragraph 4
140 142 147 155 157 160 164 167
1. Introduction The Convention on the Rights of Persons with Disabilities (CRPD)1 is an innovative treaty that promises to expand not only disability rights but also international human rights law (IHRL) more generally.2 Chief amongst these expansions are the concepts of equality and non-discrimination articulated in Article 5 of the convention. This chapter explores the myriad advances embodied in Article 5 and analyses the legal import of each paragraph. It also considers the potential challenges to implementing Article 5, including clashes between the CRPD Committee’s (the Committee’s) interpretation and that of states parties, and conflicts between equality rights, such as the right to abortion and arguments that non-discrimination under the CRPD requires bans on aborting
1 The author acknowledges research assistance and input from Ailsa McKeon; additional research assistance from Donia Khaled El Maghrabi and Sudipta Purkayastha, and helpful commentary from Monica Arango, Inés E de Escallón, and Raquel Jelinek. 2 Convention on the Rights of Persons with Disabilities (adopted 13 December 2006, entered into force 3 May 2008) 2515 UNTS 3.
Corsi
Article 5
141
disabled foetuses. What emerges is a picture of equality and non-discrimination born of ‘a three-dimensional view of the reality of life as a person with a disability’.3 It is the CRPD’s emphasis on the realities of life with a disability that demands a more holistic, pragmatic, and further reaching scope than previous IHRL. Before exploring the CRPD’s treatment of equality and non-discrimination, it is important to note that here is no one definition of equality or non-discrimination in IHRL, nor have UN treaty bodies produced consistent commentary on these principles.4 Yet, equality is ‘the most important principle imbuing and inspiring the concept of human rights’5 and achieving equality and non-discrimination is ‘the dominant and recurring theme of international human rights law’.6 Equality has meant, and can mean, many things, such as consistent treatment; equality of opportunity; equality of outcomes; transformative equality; or equality as a structural principle.7 Further, equality and non- discrimination can be separated into categories such as de jure and de facto; intentional and non-intentional; direct and indirect; multiple, systemic, private, and more.8 And, while closely interrelated, equality and non-discrimination are distinct concepts, with equality referring to a state of being, and non-discrimination referring to a corresponding ban on prejudicial or unfair treatment that produces inequality. One of the major advances of the CRPD is the codification of a relatively recent concept of equality, known as transformative or inclusive equality.9 Article 5 of the CRPD, and indeed the entirety of the convention, should be understood as enshrining and promoting transformative equality. Building on previous thematic conventions such as the International Convention on the Elimination of All Forms of Racial Discrimination (CERD) and the Convention on the Elimination of all Forms of Discrimination Against Women (CEDAW), the CRPD advances the equality of persons with disabilities (PWDs) by obligating states parties to make both structural and individually tailored adjustments in order to achieve full inclusion of PWDs. Analysing the CRPD and in particular Article 5 through Fredman’s four aims of transformative equality—1) overcoming the cycle of disadvantage; 2) promoting respect for dignity and worth; 3) accommodating difference through structural change; and 4) promoting social and political inclusion and participation10—reveals a transformative equality approach. Article 5 either explicitly addresses these inclusive and transformative dimensions, such as by requiring reasonable accommodations (RAs) that promote participation and promoting specific measures that redress disadvantage, or implicitly addresses these features, as seen in the
3 Gerard Quinn and Anna Arstein-Kerslake, ‘Restoring the “Human” in “Human Rights”: Personhood and Doctrinal Innovation in the UN Disability Convention’ in Conor Gearty and Costas Douzinas (eds), Cambridge Companion to Human Rights Law (CUP 2012) 38. 4 Wouter Vandenhole, Non-Discrimination and Equality in the View of the UN Human Rights Treaty Bodies (Intersentia 2005) 33, 289. 5 Manfred Nowak, UN Covenant on Civil and Political Rights: CCPR Commentary (2nd edn, NP Engel 1993) 458. 6 Anne Bayefski, ‘The Principle of Equality or Non-Discrimination in International Law’ (1990) 11 HRLJ 1, 2. 7 Jarlath Clifford, ‘Equality’ in Dinah Shelton (ed), The Oxford Handbook of International Human Rights Law (OUP 2013) 420–45. 8 9 Vandenhole (n 4) 33–36. Clifford (n 7) 430. 10 Sandra Fredman, Discrimination Law (2nd edn, Clarendon 2011) 25.
Corsi
142
Equality and Non-Discrimination
Committee’s draft General Comment on Article 5 arguing for eliminating negative stereotypes11 and full inclusion and participation of PWDs.12 Thus, article 5, and the analysis of it in this chapter, should be read with the goals of transformative equality in mind. The structure of this chapter is as follows. Section II examines the history of equality and non-discrimination in IRHL and explores the drafting history of article 5, which reveals substantial debate over key issues such as the burden on States to provide RAs and how, if not always why, it came to be that article 5 contains phrases not found in other IRHL treaties. Section III analyses each of the four paragraphs of article 5 in turn, providing interpretation, highlighting potential or actual conflicts, and noting innovations. The chapter concludes with a focus on how the CRPD’s distinctive formulation of equality helps reimagine key concepts such as inclusion, autonomy, community, and human flourishing.
2. Background The notion that all human beings are equal is a twentieth-century development. For centuries prior to this, equality before the law referred to the rule of law, and the notion that all laws should be applied equally.13 Yet, despite their relatively recent origins, the principles of equality, non-discrimination, and human dignity are at the heart of IHRL. Equality and non-discrimination are the only human rights mentioned in the UN Charter,14 and in 1948, the Universal Declaration of Human Rights (UDHR) promoted equality as a central tenet of IHRL via articles 1 and 2.15 The UDHR states that ‘recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world’,16 thereby making equality a necessity for securing the UN’s mission. This formulation of equality was repeated in the International Covenant on Civil and Political Rights (ICCPR)17 and the International Covenant on Economic, Social and Cultural Rights (ICESCR),18 further enshrining equality as the cornerstone of IHRL. Every major human rights treaty that followed codified the principle of equality and non-discrimination in some way. Many other treaties, such as key international 11 CRPD Committee, ‘Draft General Comment on Equality and Non-discrimination (Article 5)’ (31 August 2017) (‘Draft General Comment’), available at: , paras 1, 2, 8, 28, and 44. 12 ibid paras 9, 40, 54, 60, 65, 73, 74, 76(e), and 77. 13 This dates back at least to Thucydides’ notion of procedural equality as the key to democracy in classical Greece, and continues to be associated with liberal democracy: see eg George L Abernethy, Introduction to the Idea of Equality: An Anthology (John Knox 1959) 15–24. 14 Charter of the United Nations (adopted 26 June 1945) 1 UNTS XVI (UN Charter), Preamble para 2, Art 55, Art 56 15 See Navanathem Pillay, ‘Foreword’ in William A Schabas (ed), The Universal Declaration of Human Rights: The Travaux Préparatoires (CUP 2013) xliii; Gordon Brown (ed), The Universal Declaration of Human Rights in the 21st Century (Open Book 2016) 35–36, 41. 16 Universal Declaration of Human Rights (adopted 10 December 1948) UNGA Res 217A(III) (UDHR) Preamble para 1. 17 International Covenant on Civil and Political Rights (adopted 16 December 1966, entered into force 23 March 1976) 999 UNTS 171. 18 International Covenant on Economic, Social and Cultural Rights (adopted 16 December 1966, entered into force 3 January 1976) 993 UNTS 3.
Corsi
Article 5
143
humanitarian law (IHL) instruments, followed suit, underscoring the centrality of these principles in protecting human dignity, a goal shared by both IHRL and IHL.19 The profundity of the shift from equal application of the law to the inherent equality of all peoples cannot be overstated. In the former, equality is procedural, even though it guarantees substantive goods. The latter formulation opens the door to substantive equality rights and the structural changes needed to ensure them. Disability has only recently been treated as a human rights issue,20 having been ignored by human rights bodies for decades21 and treated instead as a medical and individual issue.22 After years of advocacy by PWDs and their allies,23 the CRPD joined—and arguably advanced—a longer line of human rights treaties. This ‘reclassification’ of disability as a human rights issue24 expands the protections and enforceability of equality for disabled persons, particularly because the principle of non-discrimination and the human rights of minority groups are likely non-derogable.25 The new ‘social model’ for disability, which stresses that the exclusion of disabled persons from full participation in society is a result of discriminatory attitudes and emphasizes that society must adapt to be inclusive,26 finds a natural counterpart in human rights laws that prohibit such discrimination. The social model shifts the emphasis from an individual’s needs to what the state and society owe the individual. This reclassification was ‘inspired by the values that underpin human rights: the inestimable dignity of each and every human being . . . [and] the inherent equality of all regardless of difference’.27 Given that the CRPD is situated squarely in a broader human rights lineage, and that the origins of human rights law derives from the protection and participation of minority groups,28 it is useful to consider article 5 in this broader context. At present, the CRPD reads as an apex treaty, consolidating and advancing seventy years of human rights law. By briefly tracing the history of equality in IHRL, both the foundations and the innovations of article 5 come into relief.
19 Cordula Droege, ‘The Interplay Between International Humanitarian Law and International Human Rights Law in Situations of Armed Conflict’ (2007) 40 Isr L Rev 310, 312. 20 Anna Lawson, ‘Disability, Degradation, and Dignity: The Role of Article 3 of the European Convention on Human Rights’ (2006) 56 NILQ 462; Janet E Lord and Rebecca Brown, ‘The Role of Reasonable Accommodation in Securing Substantive Equality for Persons with Disabilities: The UN Convention on the Rights of Persons with Disabilities’ (2011) Critical Perspectives HR Disability L 273. 21 Michael L Perlin, International Human Rights and Mental Disability Law: When the Silenced are Heard (OUP 2012) 8–9. 22 See eg International Classification of Impairments, Disabilities and Handicaps: A Manual of Classification Relating to the Consequences of Disease (WHO 1980). 23 Maya Sabatello and Marianne Schulz, Human Rights and Disability Advocacy (University of Pennsylvania Press 2013) 13–14. 24 Theresia Degener, ‘International Disability Law—A New Legal Subject on the Rise: The Interregional Experts’ Meeting in Hong Kong, December 13–17, 1999’ (2000) 18 Berkeley J Intl L 180, 199. 25 See HRCtee, ‘General Comment 29: States of Emergency (Article 4)’ (2001) UN Doc CCPR/C/21/ Rev 1/Add 11 paras 8 and 13(c). Minority rights in IHRL have traditionally referred to ethnic, linguistic, or religious minorities; see eg James Crawford, Brownlie’s Principles of Public International Law (8th edn, OUP 2008) 647–49. However, there is no reason why PWDs cannot become legally protected as a ‘minority’ group. 26 Katharina Heyer, Rights Enabled: The Disability Revolution, from the US, to Germany and Japan, to the United Nations (University of Michigan Press 2015) 23–24. 27 Gerard Quinn and Theresia Degener (eds), Human Rights and Disability: The Current Use and Future Potential of United Nations Human Rights Instruments in the Context of Disability (UN 2002) 1. 28 See eg Frank Koszorus, Jr, ‘The Forgotten Legacy of the League of Nations Minority Protection System’ in Bela K Kiraly, Peter Pastor, and Ivan Sanders (eds), Total War and Peacemaking: A Case Study on Trianon (Brooklyn College Press 1982) 547.
Corsi
144
Equality and Non-Discrimination
The earliest formulations of equality bear some similarities to article 5, but mostly, they highlight a predominantly civil and political rights focused model of equality without concern for disability. The UN Charter speaks of equality between men and women, and between nations.29 It also calls for the ‘universal respect for, and observance of, human rights and fundamental freedoms for all without distinction as to race, sex, language, or religion’.30 ‘Distinction’ would be replaced in subsequent human rights conventions with a prohibition on discrimination. Following this, the UDHR similarly enshrined the equality of men and women,31 and the right to equal pay for equal work.32 Article 7 of the UDHR is a predecessor to the CRPD’s article 5(1) and 5(2), articulating equality before the law and equal protection of the law, as well as a prohibition on discrimination.33 Article 21 of the UDHR provides for equal participation in government,34 a form of civil and political equality that speaks to the need for inclusiveness and participation. Reiterating equality between men and women,35 the ICESCR expanded the concept of equality in IHRL to include equal opportunities for ‘all’ to such goods as employment,36 the enjoyment of physical and mental health,37 and access to education.38 These rights remain of particular importance to PWDs, particularly because disability is too often correlated with poverty,39 exclusion from work and school,40 and unique health care challenges.41 Accordingly, rights to equal opportunities and reasonable accommodations in work, education, and health have been enshrined in articles 27, 24, and 25 of the CRPD, thereby providing a context in which to interpret the meaning of equality under article 5. In 1994, the ICESCR Committee issued ‘General Comment No 5: Persons with Disabilities’. The comment noted that ‘[e]ven in countries that have a relatively high standard of living, persons with disabilities are very often denied the opportunity to enjoy the full range of economic, social and cultural rights recognized in the Covenant’,42 and outlined reasons why and ways in which states parties must do more to correct this. The ICCPR’s article 26 is another important predecessor to the CRPD’s article 5(1), as article 5(1) builds on its language. Given this, state practice and jurisprudence regarding article 26 may be helpful in interpreting article 5(1). Compared to previous human rights instruments, article 26 provides an expanded list of prohibited grounds for discrimination. While disability could be read into ‘or other status’, to date there is very little article 26 jurisprudence regarding disability. The case of Manuel Wackenheim v France from 1999 appears to be one of the only, if not the only, instances in which the HRC addressed disability directly.43 In Wackenheim the HRC considered the claim that France’s ban on dwarf tossing violated Mr Wackenheim’s rights and constituted discrimination. Prior to the ban, which France argued was for the protection of human dignity and public order, Mr Wackenheim had been employed for the purposes of dwarf tossing for
30 31 UN Charter, preamble para 2. ibid Art 55. UDHR, preamble para 5. 33 34 35 ibid Art 23(2). ibid Art 7. ibid Art 21. ICESCR (n 18) Art 3. 36 37 38 ibid Art 7. ibid Art 12(1). ibid Art 13. 39 Jean-Francois and Mitchell M Loeb, ‘Trani Poverty and Disability: A Vicious Circle? Evidence from Afghanistan and Zambia’ (2012) Brown School Faculty Publications 25. 40 Committee on Human Rights, Parliament of Britain, A Life Like Any Other?: Human Rights of Adults with Learning Disabilities, Seventh Report of Session 2007–08 Vol 2: Oral and Written Evidence (The Stationery Office 2008) 186. 41 J Francois and M Loeb, ‘Trani Poverty and Disability’ (n 39). 42 CESCR, ‘General Comment No 5: Persons with Disabilities’ (9 December 1994) UN Doc E/1995/22 1. 43 HRCtee, Communication No 854/1999 (2002) UN Doc CCPR/C/75/854/1999. 29 32
Corsi
Article 5
145
entertainment.44 The Committee concluded that his article 26 rights had not been violated because the ban was based on objective criteria and further that the ban was enacted to uphold human dignity.45 This decision was devoid of any discussion of how disability in particular or Mr Wackenheim’s dwarfism interacts with equality under article 26. Additional precursors to article 5 can be found in the International Convention on the Elimination of All Forms of Racial Discrimination (CERD).46 Equal protection of and before the law, and freedom from discrimination, are enshrined in CERD’s preamble.47 Their placement in the preamble and the preceding phrase ‘considering that’ suggests that such equalities form a pre-existing foundation on which the more specific subsequent articles rest. CERD’s article 1(4) is significant to the development of disability rights in that it introduced the idea of ‘special measures,’ reiterated in the CRPD’s article 5(4). Like the CRPD, CERD lays out provisions of civil, political, economic, social, and cultural rights.48 The Convention on the Elimination of All Forms of Discrimination against Women (CEDAW) similarly protects women’s equal enjoyment of all of these rights49 and calls for special measures to obtain both equality of opportunity and equality of treatment.50 Like the ICESCR, CEDAW stresses the need for equality and non-discrimination in education,51 employment,52 and health,53 and article 15(1) provides for equality before the law. While CEDAW takes care to consider specific situations that affect a minority of women and augment their vulnerability, for example prostitution or a rural setting,54 it makes no mention of disability. While these treaties provided some of the building blocks for the CRPD’s articulation of equality, non-discrimination, and special measures, it was not until the Convention on the Rights of the Child (CRC)55 that disability was directly addressed. Article 2(1) instructs states parties to ensure the full protection of all children’s rights regardless of disability, but, confusingly, in article 2(2)’s articulated prohibitions on discrimination, disability is not listed as a protected basis.56 Article 23 of the CRC is dedicated solely to the topic of children with disabilities and their ‘active participation in the community,’ including disabled children’s rights to ‘effective access’ regarding education, recreation, health, preparation for employment, and more. Given that international human rights conventions had until this moment been silent regarding disability, article 23 represents a major advancement. It is also of particular note that no state party entered a reservation to article 23, indicating a ripe political climate allowing for the development of the CRPD. Interestingly, the CRC was drafted in the 1980s and came into force in 1990, just before the international disability rights movement began to coalesce into a force that propelled the creation of the CRPD.57 ‘General Comment No 9 on Article 23’, published in 2006, notes that these 45 ibid paras 2.1–2.3. ibid para 7.4. International Convention on the Elimination of All Forms of Racial Discrimination (adopted 21 December 1965, entered into force 4 January 1969) 660 UNTS 195. 47 48 ibid Preamble paras 1–3. ibid Art 5. 49 Convention on the Elimination of All Forms of Discrimination against Women, Art 1. 50 51 52 53 ibid Art 4(1). ibid Art 10. ibid Art 11. ibid Art 12. 54 ibid Arts 6 and 14. 55 Convention on the Rights of the Child (adopted 20 November 1989, entered into force 2 September 1990) 1577 UNTS 3. 56 CRC Ctee, ‘General Comment 9: The Rights of Children with Disabilities’ (2006) UN Doc CRC/C/ GC/9 para 8 nevertheless contends that Art 2 prohibits disability as a ground for discrimination. 57 Sharan E Brown and Michael J Guralnick, ‘International Human Rights to Early Intervention for Infants and Young Children with Disabilities: Tools for Global Advocacy’ (2015) Adults and Young Children PMC 2, 6, 8. 44 46
Corsi
146
Equality and Non-Discrimination
decades in particular were key in drawing the world’s ‘positive focus’ on disability rights.58 This underscores the significance of disability advocacy in reshaping IHRL. Of particular relevance to interpreting article 5(3)’s instruction to provide reasonable accommodation are article 23’s references to provisions ‘subject to available resources’ (23(2)); the need to provide assistance free of cost ‘whenever possible’ (23(3)); and the directive to engage in international cooperation to share information that can help developing countries in particular to provide disabled children with the health care and other opportunities their unique needs require (23(4)).59 State practice and jurisprudence on this may be relevant to securing the reasonable accommodations mandated by article 5(3) of the CRPD, particularly because, as discussed in section III of this chapter, some developing countries have already entered reservations regarding their ability to comply with the CRPD’s provisions that entail cost. When the CRC Committee issued General Comment No 9, it noted that very little international exchange had been taking place, and further that it was unclear how the needs of developing countries to fulfil the rights of disabled children were being taken into account.60 Towards that end, paragraph 22 of the comment made concrete suggestions on how the international community might fund the necessary programmes in developing countries. The comment also directed states parties to allocate the maximum budgets possible,61 a phrase that, while appropriate and useful, nevertheless seems difficult to monitor or enforce.62 Indeed, the CRC committee has been critiqued for failing to fulfil its economic and social rights obligations towards children when such measures as rights-based budget analysis are available.63 Beyond the core international treaties, several regional treaties and UN declarations helped pave the way for article 5. Article 13 of the African Charter on the Rights and Welfare of the Child established the right of every disabled child to special measures, with the caveat that these are subject to progressive realization and available resources.64 The entire focus of the Inter-American Convention on the Elimination of All Forms of Discrimination against Persons with Disabilities (IACEDPD)65 is on non-discrimination, and commits the states parties to ‘collaborate effectively’ with each other to create conditions of equality.66 Interestingly, while both mention dignity, neither the United Nations Declaration on the Rights of Mentally Retarded Persons (UNDRMRP)67 nor the UN Declaration on the Rights of Disabled Persons (UNDRDP)68 articulate principles of equality or non-discrimination in such terms. However, the World Programme of Action Concerning Disabled Persons 69 promoted ‘equalization of opportunities’ as a core tenet, the Principles for the Protection of Persons with Mental Illness and for the Improvement of Mental Health Care stressed equal enjoyment of rights and non-discrimination70 and 59 CRC Ctee (n 56) para 2. CRC (n 56) Art 22. 61 62 See CRC Ctee (n 57) paras 15, 16. ibid Art 14(a). See ibid Art 20. 63 See Aoife Nolan, ‘Economic and Social Rights, Budgets and the Convention on the Rights of the Child’ (2013) 21 Intl J Children’s Rts 248. 64 African Charter on the Rights and Welfare of the Child (adopted 1 July 1990, entered into force 29 November 1999) Art 13. 65 Inter-American Convention on the Elimination of All Forms of Discrimination against Persons with Disabilities (adopted 7 June 1999, entered into force 14 September 2001). 66 67 ibid Art 4(2)(b). UNGA Res 2856 (XXVI) (20 December 1971). 68 UNGA Res 3447 (XXX) (9 December 1975). 69 ‘World Programme of Action Concerning Disabled Persons’ UNGA Res 37/52 (3 December 1982). 70 ‘Principles for the Protection of Persons with Mental Illness and for the Improvement of Mental Health Care’ UNGA Res 46/119 (17 December 1991), Principles 1(4) and (1)5. 58 60
Corsi
Article 5
147
the right to live and work in the community,71 and—as its name makes clear—the UN’s Standard Rules on the Equalization of Opportunities for Persons with Disabilities72 focused on securing equality for PWDs, including in education, employment, family life, and more. Article 22 of the Vienna Declaration and Programme of Action, adopted by the UN World Conference on Human Rights in 1993,73 stressed the equal rights of PWDs, ‘including their active participation in all aspects of society,’ article 29 reiterated the special vulnerability of PWDs during conflict, and articles 63–65 were dedicated solely to securing equal opportunity for PWDs. Regionally and in country specific situations, legal advancements for the equality of PWDs continued via the Situation of Persons with Disabilities in the American Hemisphere74 and the Panama Commitment to Persons with Disabilities in the American Hemisphere.75 It was in this context of the long overdue thematic focus on the rights of PWDs that the authors of the CRPD began their work. The next section focuses on how article 5 developed through the eight sessions through which the CRPD was drafted.
3. Travaux Préparatoires Equality and non-discrimination featured in the very earliest drafts of the CRPD. At the First Session, the Ad Hoc Committee (Committee) received general statements from representatives of twenty-two nations, as well as seven non-governmental organizations (NGOs), the International Labour Organization and the Office of the United Nations High Commissioner for Human Rights (UNHCHR).76 The Committee additionally had before it a working paper submitted by Mexico, position papers of the European Union and China, compilations of existing norms and standards, and several symposia reports.77 The Mexican working paper contained a draft convention text,78 which referred in several draft articles to the concepts of equality and non-discrimination. Many of these draft articles seemed built upon foundations laid in the human rights documents reviewed in the previous section of this chapter. For example, draft article 4 mentioned ‘compensatory measures’ and ‘specific measures to protect,’ akin to CERD and CEDAW’s special measures; draft article 5 appeared to borrow from CEDAW’s instructions to eliminate cultural stereotypes; and the draft as a whole was focused on articulating and eliminating discrimination in all forms. The EU’s position paper referred to existing standards within
ibid Principle 3. ‘Standard Rules on the Equalization of Opportunities for Persons with Disabilities’ UNGA Res 48/96 (20 December 1993). 73 ‘Vienna Declaration and Programme of Action of the World Conference on Human Rights’ (12 July 1993) UN Doc A/CONF 157/23. 74 Situation of Persons with Disabilities in the American Hemisphere (adopted 9 June 1995) OAS Doc AG/ RES 1356 (XXV-O/95). 75 Panama Commitment to Persons with Disabilities in the American Hemisphere (adopted 5 June 1996) OAS Doc AG/RES 1369 (XXVI-O/96). 76 ‘Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (27 August 2002) UN Doc A/57/357 (First Committee Report) para 7. 77 ibid para 6. 78 See ‘Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities: Working Paper Submitted by Mexico’ (2004) UN Doc A/AC265/WP 1. 71 72
Corsi
148
Equality and Non-Discrimination
the bloc,79 which similarly emphasized equality and non- discrimination, while the Chinese contribution was of a more general nature.80 It was then decided to divide the Committee’s work according to thematic areas, including equality in civil and political rights, and equality in economic, social, and cultural (ESC) rights.81 The Committee finally recommended to the UN General Assembly a resolution adopting the Committee’s report on its First Session, which included many references to ‘equalizing opportunities’, and making recommendations for future sessions and contributions.82 At this stage, article 5 in its current form had yet to take shape. At its Second Session, article 5—originally designated as article 7—began to emerge. The Committee considered reports of the Secretary-General on issues and emerging trends related to the advancement of persons with disabilities,83 and on progress in the equalization of opportunities by, for, and with persons with disabilities.84 As regards the former, representations were made on behalf of the USA, the EU, Japan, Mexico, New Zealand, Thailand, Chile, Qatar, Canada, Fiji, South Africa, Uganda, the UN Economic and Social Commission for Asia and the Pacific, and the ILO. Discussion of the latter also featured submissions from several National Human Rights Institutions (‘NHRIs’), individually and collectively, as well as from China, Brazil, the UN Mine Action Service, and the Office of the High Commissioner for Human Rights.85 In addition, the Committee had before it a number of documents, several of which placed emphasis on the principles of equality and non-discrimination.86 The Committee held general debates on various matters.87 Three panel discussions were also arranged, the second of which examined the principles of non-discrimination and equality from a disability perspective.88 This panel featured four presenters: Ms Cynthia 79 See ‘Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities: Position Paper Submitted by the European Union’ (2004) UN Doc A/AC265/WP 2. 80 See ‘Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities: Position Paper Submitted by the China’ (2004) UN Doc A/AC265/WP 3. 81 82 First Committee Report (n 77) para 8. ibid para 16. 83 See ‘Issues and Emerging Trends related to Advancement of Persons with Disabilities’ (2003) UN Doc A/AC265/2003/1 and ‘Overview of Issues and Trends related to Advancement of Persons with Disabilities’ (2003) UN Doc A/AC265/2003/2. 84 See ‘Progress in Equalization of Opportunities by, for and with Persons with Disabilities’ UN Doc A/AC265/2002/3. 85 See ‘Statements: Second Session of the Ad Hoc Committee on a Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities’ (UN 2003–2004), available at: . 86 See ‘Letter from the Executive Director of the Danish Institute for Human Rights addressed to the Secretary of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (26 May 2003) UN Doc A/AC265/2003/CRP/9; ‘Bangkok Recommendations on the Elaboration of a Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities’ (2003) UN Doc A/AC265/CRP 10; ‘Beirut Declaration and Recommendations on the Elaboration of a Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities’ (2003) UN Doc A/AC265/CRP 12; ‘Compilation of Proposals for a Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities’ (2003) UN Doc A/AC265/CRP 13 Add 1 & Add 2; and ‘Letter from the Deputy Permanent Representative of Venezuela to the United Nations addressed to the Secretary of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (18 June 2003) UN Doc A/AC265/2003/WP 1. 87 See ‘Report of the Second Session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (3 July 2003) UN Doc A/58/118 & Corr 1 (Second Session Report) paras 10–11. 88 For further detail of the panel discussions, see ibid Annex II.
Corsi
Article 5
149
Waddell (USA) spoke on accessibility as a human rights issue; Ms Charlotte McClain (South Africa) on that nation’s experience with the application of the principles of non- discrimination and equality; Dr Rangita de Silva (Sri Lanka) on gender perspectives and analysis; and H E Ambassador Leandro Despouy (Argentina) on the historical evolution of human rights and disability.89 It was concluded from this panel that a binding instrument would best progress human rights of persons with disability.90 Finally, the Committee decided to establish a Working Group for the purpose of preparing and presenting a draft text for negotiation.91 The Working Group met from 5 to 16 January 2004, with the aim of presenting a draft text at the Third Session of the Committee later that year. In the draft eventually prepared by the Working Group, the principles of equality and non-discrimination became the subject of draft Article 7.92 This early version of article 5 included requirements that states parties: [P]rovide reasonable accommodation, defined as necessary and appropriate modification and adjustments to guarantee to persons with disabilities the enjoyment or exercise on an equal footing of all human rights and fundamental freedoms, unless such measures would impose a disproportionate burden.
Whether or not such measures ‘impose a disproportionate burden,’ how to make this determination, and what rights remain available to PWDs under article 5 in the face of states parties arguing that such a burden prevents accommodations remain key issues for the interpretation and implementation of article 5(3), despite the fact that this language did not make the final cut. Special measures were also included in this draft article, and the early language resembled that of CERD and CEDAW’s special measures provisions.93 A footnote regarding RAs sheds further light on what the drafters intended for article 5(3). Footnote 27 states that: There was widespread agreement in the Working Group on the need to keep the notion both general and flexible in order to ensure that it could be readily adapted to different sectors (e.g., employment, education, etc.) and in order to respect the diversity of legal traditions.
This could cut both ways: it could allow for a more expansive interpretation that provide greater protections to PWDs, or, particularities of a legal tradition could be used to deny RAs. This paragraph accomplishes several things. It protects the autonomy, decision-making power, and unique needs of PWDs. At the same time, it grants some measure of flexibility to the entity providing RAs, which might reduce the burden of provision. Following this, the footnote states that: There was general agreement that the availability of state funding should limit the use of ‘disproportionate burden’ as a reason by employers and service providers not to provide reasonable accommodation. 89 See ‘Panel II. The Principle of Non-Discrimination and Equality from Disability Perspective: Critical Issues Concerning Special Measures and Disability—Summary’ (UN 2004), available at: . 90 91 ibid. See Second Session Report (n 87) para 15. 92 See ‘Working Group on a Convention’ (UN 2007), available at: . 93 ‘Special measures aimed at accelerating de facto equality of persons with disabilities shall not be considered discrimination as defined in the present Convention, but shall in no way entail as a consequence the maintenance of unequal or separate standards; those measures shall be discontinued when the objectives of equality of opportunity and treatment have been achieved.’
Corsi
150
Equality and Non-Discrimination
This shifts the burden to states parties to help ensure that private entities provide RAs. It does not, however, address the issue of when states parties argue that funding prevents them from such assistance. Next, the footnote states that: Some members of the Working Group supported the proposition that a failure to ‘reasonably accommodate’ should in itself constitute discrimination, some of those members highlighted General Comment 5 of the Committee on Economic, Social and Cultural Rights as supporting this view. Other members of the Working Group considered that the Convention should be achieved or framed under relevant domestic legislation. Specifically, they took the view that it was inappropriate for an international legal instrument designed primarily to engage State responsibility to frame a failure to ‘reasonably accommodate’ on the part of private entities as a violation of the non-discrimination principle.
The important relationship between state responsibility and private entities in regards to equality and non-discrimination is addressed in section III of this chapter. The debate evidenced in the travaux highlights the complexity of this legal issue. At the Third Session, the Committee was presented with two reports of the Working Group.94 At this session, a recommendation was made that PWDs and experts advise the UN on how to increase accessibility in the drafting process, including improving access ‘to the premises, technology, and documents.’95 Discussion of draft article 7 of the Working Group’s proposed text took place over a period of two hours on 25 May 2004.96 During this period, seventeen national governments and various NGOs made representations. Issues raised included the distinction between and need for separation of equality and non-discrimination; multiple, direct, and indirect discrimination; reasonable accommodation; and the language of ‘special measures’, ‘disproportionate burden’, and regarding equality in relation to the law.97 At the Third Session, the contours of article 5(1) began to take shape, with suggestions made about the meanings of ‘equality before the law’, and ‘non-discrimination’. Mexico suggested that equality before the law means formal equality,98 similar to the pre- human rights meaning that all laws should be applied equally. It was also at this session that Canada proposed language that would become part of the final draft, namely ‘and under the law’ as well as ‘equal benefit of the law’.99 Andrea Broderick has pointed out that no other international human rights treaties includes these additional phrases, and that ‘equal benefit of the law’ appears to be derived from section 15(1) of the Canadian Charter of Rights and Freedoms.100 Broderick has also noted that the travaux provide little information about the substantive differences meant via these distinct phrases, apart from a comment at the Fifth Session that equality under the law could be achieved ‘through
94 ‘Report of the Working Group to the Ad Hoc Committee’ (2004) UN Doc A/AC265/2004/WG/1 and ‘Report of the Working Group Looking at the Protection of the Rights of Persons with Disabilities’ (2004) UN Doc A/AC265/2003/CRP 2. 95 ibid para 12. 96 ‘Daily Summary of Discussions Related to Article 7 Equality and Non-Discrimination’ (UN 2003-04), available at: (Daily Summary on Article 7). 97 98 99 ibid. ibid. ibid. 100 Andrea Broderick, The Long and Winding Road to Equality and Inclusion for Persons with Disabilities: The United Nations Convention on the Rights of Persons with Disabilities (Intersentia 2015) 83.
Corsi
Article 5
151
strict respect for non-discrimination.’101 Indeed, the absence of travaux commentary on these phrases leaves them open to interpretation, at least until the forthcoming General Comment on article 5 is published, as this will perhaps shed some additional light on the subject. Several delegations commented on special measures, as well as on budgetary constraints that may impact reasonable accommodations. Costa Rica argued against the language ‘disproportionate burden’, ‘because this would add an economic element which may be counter to the rights of PWD’.102 Following this, NGOs continued with arguments that a failure to provide reasonable accommodations would result in a failure of ESCR, that notions of a ‘disproportionate burden’ regarding RAs could lead to accommodation, and that exceptions to RAs must be limited.103 A definition of RAs appears in article 2 of the final text. At its Fourth Session, the Committee completed its first reading of the Working Group’s draft text, and reviewed articles 1–15 and 24 bis, with further review of the draft convention to ensue at subsequent sessions.104 The Committee also considered a report of the Coordinator of informal discussions, Ambassador Don MacKay of New Zealand, regarding their progress.105 This relates directly to how article 5(2) will be interpreted in light of intersectionality. Broderick states that, based on Ambassador MacKay’s insistence that draft article 7 should not contain a list of the multiple grounds of discrimination but rather that this list should appear in the preamble, article 5(2) must therefore be interpreted together with a reading of paragraph (p) of the Preamble,106 an idea that will be revisited in section III. In these discussions, there was general agreement as to the substance of draft article 7, although it was remarked that existing paragraph 3 had a high risk of being misinterpreted.107 This paragraph, which had stated that ‘Discrimination does not include a provision, criterion or practice that is objectively and demonstrably justified by the State Party by a legitimate aim and where the means of achieving that aim are reasonable and necessary’,108 was therefore deleted. This was a wise decision, as such a paragraph would have been difficult to interpret without definitions of ‘legitimate aims’, and further because its focus on a defence for states parties clashes with the purposes of article 5. At this session, draft article 7(1) contained almost word for word what would become article 5(1) and 5(2). Similarly, the text of draft article 7(4) presented at this session would become, after some small modifications, article 5(3). Also at this session, the summary of discussions on draft article 4 declared that ‘Non-discrimination is not subject to the
101 ibid 87, referencing ‘Daily Summary of Discussions at the Fifth Session: 24 January 2004’ (UN 2003- 04), available at: . 102 103 Daily Summary on Article 7 (n 96). ibid. 104 ‘Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its Fourth Session’ (14 September 2004) UN Doc A/59/360 para 9 (Fourth Session Report). 105 106 ibid; see Annex IV. Broderick (n 100) 104. 107 Fourth Session Report (n 104) para 25. 108 ‘Report of the Third Session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (9 June 2004) UN Doc A/AC265/2004/5 Annex II: Compilation of Proposed Revisions and Amendments Made by the Members of the Ad Hoc Committee to the Draft Text Presented by the Working Group as a Basis for Negotiations by Member States and Observers in the Ad Hoc Committee, available at: .
Corsi
152
Equality and Non-Discrimination
doctrine of progressive realization’,109 a statement that may serve as an interpretive aid for article 5. Formal discussion of article 7 ensued on 25 August 2004, and on 1–3 September.110 An important change made during this session was the replacement of the term ‘on an equal footing’ with the phrase ‘on a basis of equality with others’ in draft article 7(2). This language was not included in the final text of article 5, but it does appear in articles 12 and 29. Those interested in an analysis of its meaning might refer to Broderick’s discussion.111 Proposals from the previous session continued to have support; for example, the EU expressed new willingness for equality and non-discrimination to be addressed in separate articles. Thailand put forward a suggestion, which proved controversial, that denial of reasonable accommodation should be included in the definition of discrimination. Other aspects of this definition were also discussed, as well as the concepts of indirect and direct discrimination, and perceived or imputed disability. At the Fifth Session, informal discussions took place with respect to articles 7(5) to 15 of the draft convention and proposed additional articles.112 Draft article 7(5) was discussed on 24 January 2005,113 as well as the following day in connection with draft article 9’s provision for equal recognition as a person before the law.114 A bracketed text of article 7(5) was produced, highlighting issues surrounding ‘positive’ or ‘special’ measures; clarification that such measures will not result in unequal or separate standards; and inclusion of an effective sunset clause for when such measures are no longer required.115 Of note was the conclusion that: Following an extensive discussion of paragraph 5 of draft article 7, there was general agreement that the words ‘measures aimed at accelerating de facto equality of persons with disabilities shall not be considered discrimination’ should remain in the text. There was, however, no agreement on whether the word ‘measures’ should be qualified by an adjective such as ‘special’, or ‘positive’, and if so, which adjective would be preferable.116
Draft article 7(5) would go on to become article 5(4); ‘special’ as an adjective preceding ‘measures’ would be agreed at Session Seven. The Committee also considered various amendments proposed to date.117 Following these deliberations, the Committee adjourned further consideration of the draft convention to its next session.118 At the Sixth Session, the Committee completed its consideration of draft Articles 15, 15bis, and 24bis that had been adjourned from the Fifth Session.119 Informal discussions took place with respect to these provisions; consideration was given to draft article 7 110 Fourth Session Report (n 104) para 7. Daily Summary on Article 7 (n 96). Broderick (n 100) 92–93. 112 ‘Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its Fifth Session UN Doc A/AC265/2005/2 (23 February 2005) (Fifth Session Report) para 9. 113 See ‘Daily Summary of Discussion at the Fifth Session 24 January 2005’ (UN 2005), available at: . 114 See ‘Daily Summary of Discussion at the Fifth Session 25 January 2005’ (UN 2005), available at: . 115 116 See Fifth Session Report (n 112) Annex II para 7. ibid Annex II para 4. 117 ibid para 7. 118 Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its Fifth Session UN Doc A/AC265/2005/2 (23 February 2005) para 15. 119 See ‘Proposed Organization of Work’ (UN 2005), available at: , fn1. 109 111
Corsi
Article 5
153
insofar as it was relevant to the provisions being given primary consideration at this session.120 In addition, the Committee had before it two background documents prepared by the Office of the UNOHCHR, the first on the concept of ‘special’ measures in international human rights law,121 and the second on legal capacity.122 At the Seventh Session, the Committee continued its review of the draft convention, based on a draft text proposed by the Chair.123 In this draft, equality and non- discrimination appeared for the first time as draft article 5 rather than 7, reflecting delegates’ expressions of the importance of these concepts.124 The Committee reviewed three background conference documents prepared by the UNOHCHR, the first on the concept of RAs,125 the second on accessibility of information and communications in respect of visual impairments,126 and the third on the draft final provisions of the convention.127 Informal discussions took place with respect to articles 1 to 34, the preamble, and the title of the draft convention as well.128 Draft article 5 was discussed in detail on 16 January 2006.129 Written proposals on this provision had been submitted by the EU, Israel, and NGO the International Disability Caucus (‘IDC’). Austria, speaking on behalf of the EU, expressed that Article 5(4) should refer to ‘specific’ measures, as ‘special’ was disfavoured by NGOs and ‘positive’ caused concern amongst several delegations.130 ‘Specific measures’ won out in the final text. Once again, a proposal was made for the language ‘on the equal basis with others’; Kenya submitted that this should be included in article 5(3) ‘to go further than’ RAs alone.131 While Australia expressed that the phrase instructing states parties to ‘take appropriate steps’ to provide RAs was ‘a move backwards from the current position under international law’, as this may remove the burden placed on the states to treat RAs as fundamental rights, and Israel stressed that it agreed with the NGO community that article 120 See ‘Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its Sixth Session’ (17 August 2005) UN Doc A/60/266, Annex II, and ‘UN Convention on the Rights of People with Disabilities Sixth Session of the Ad Hoc Committee—Daily Summary of Discussions by Date’ (UN 2005), available at: . 121 ‘The Concept of “Special” Measures in International Human Rights Law: Background Document Prepared by the Office of the United Nations High Commissioner for Human Rights’ (2005) UN Doc A/ AC265/2005/CRP 4. 122 ‘Legal Capacity: Background Document Prepared by the Office of the United Nations High Commissioner for Human Rights’ (2005) UN Doc A/AC265/2005/CRP 5. 123 ‘Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its Seventh Session’ (13 February 2006) UN Doc A/AC265/2006/2 para 2. 124 ibid Annex II. The full draft text and explanations of certain changes were given in a ‘Letter from the Chairman to All Members of the Committee’ (14 October 2005) UN Doc A/AC265/2006/1 paras 37–38. 125 ‘Background Conference Document on Reasonable Accommodation’ (7 December 2005) UN Doc A/ AC265/2006/1. 126 ‘Background Conference Document on Accessibility to Information and Communication’ (11 January 2006) UN Doc A/AC265/2006/CRP 3. 127 ‘Background Conference Document prepared by the Office of the High Commissioner for Human Rights: Draft Final Provisions’ (UN 2006), available at: . 128 Report of Seventh Session of the Ad Hoc Committee UN Doc A/AC265/2006/2 (13 February 2006) para 9; see Annex II. 129 See ‘Daily Summary of Discussion at the Seventh Session 16 January 2006’ (UN 2006), available at: . 130 131 ibid. ibid.
Corsi
154
Equality and Non-Discrimination
5(3) should do more to ensure that states parties took ‘active steps’,132 ‘take all appropriate measures’ prevailed in the final text. As in previous sessions, there was support for the inclusion of ‘equal and effective protection’ ‘to remind states that including non- discrimination in laws is not sufficient and that active measures are required’.133 The final text of 5(2) instructs states parties to ‘guarantee . . . equal and effective legal protection’. Also repeated from earlier discussions was the suggestion that article 5(2) include punitive measures to be applied to those that discriminate,134 a proposal that did not make the final cut. At the end of the first day, the position was summarized by the Chair: paragraph (1) was generally accepted without amendment; discussion regarding paragraph (2) centred on the EU’s proposal aimed at streamlining the text; while with respect to paragraph (3) regarding reasonable accommodation, there was disagreement as to whether its terms should be amplified, as well as whether ‘measures’ should be ‘specific’. There was also consideration of IDC’s proposal for provision that persons with disability should accept such measures, and a discussion ensued regarding how states parties could ensure this; acceptance did not comprise the final text. Draft article 5 was also the subject of brief discussions on 17, 26, 30, and 31 January 2006, as delegates sought to ensure consistency between this and other articles.135 At the end of this session, the Committee adopted a draft report on its seventh session, which contained a complete working text of the draft International Convention on the Rights of Persons with Disabilities.136 At the Eighth Session, national governments, UN agencies, NHRIs, NGOs, intergovernmental organizations, and facilitators proposed a variety of amendments. However, no alterations to draft article 5 were recommended at this stage.137 On 25 August 2006, the Committee adopted the draft Convention on the Rights of Persons with Disabilities, including a draft Optional Protocol, as a whole, without a vote.138 To date, the CRPD Committee has made Concluding Observations regarding article 5 of the Convention in relation to over sixty states parties. Common themes include the unduly narrow scope of various states parties’ legislation with respect to persons with disability, absence of appropriate provisions or sanctions in respect of denial of reasonable accommodation, multiple and intersectional discrimination, and a lack of publicly available information.139 133 134 ibid. ibid. ibid. See ‘Daily Summary of Discussion at the Seventh Session 17 January 2006’ (UN 2006), available at: ; ‘Daily Summary of Discussion at the Seventh Session 26 January 2006’ (UN 2006), available at: ; ‘Daily Summary of Discussion at the Seventh Session 30 January 2006’ (UN 2006), available at: ; and ‘Daily Summary of Discussion at the Seventh Session 31 January 2006’ (UN 2006), available at: . 136 ‘Draft Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its Seventh Session’ (2006) UN Doc A/AC265/2006/L 3. 137 See ‘Revisions and Amendments at the Eighth Session of the Ad Hoc Committee’ (UN 2007), available at: . 138 ‘Final Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (6 December 2006) UN Doc A/61/611; see Annex I for the full text adopted. 139 For a compilation of all Concluding Observations adopted as at November 2017, see International Disability Alliance, Compilation of the CRPD Committee’s Concluding Observations (International Disability Alliance 2017), available at: . 132 135
Corsi
Article 5
155
4. General Framework of Article 5 This section analyses the potential legal meaning of each paragraph of article 5 in turn. Before doing so, it is worth noting some overarching guidance to interpreting article 5 provided via the CRPD Committee’s (the Committee’s) draft general comment on the article (Draft General Comment No 6/the draft comment).140 Statements made in this draft, and in the responses of the fourteen states parties that provided written submissions in response, may highlight interpretive questions that could influence how equality and non- discrimination are implemented moving forward. Important general issues include the medical model and charity model of disability; the idea that states parties may be engaging in discrimination against PWDs via policies described as helpful to PWDs; the centrality of ‘dignity’ to equality in the CRPD; and the fact that defining ‘on an equal basis with others’ will be essential to give effect to all of the substantive articles in the Convention. First, the Committee made clear at the outset of the draft comment that its interpretation of article 5, and of the Convention in general, rejects the ‘medical model’ and ‘charity model’ as ‘incompatible’ with the Convention, and noted that these approaches are still evidenced in various states parties ‘laws, policies, the media and practices’.141 It called for a rights holder model instead.142 This interpretation was opposed by Australia and the UK in their responses,143 highlighting that at least some states parties seem reluctant to adjust their existing disability law, and bringing practical import to the fact that there is no one definition of equality or non-discrimination under IRHL. Given the Committee’s statements that use of the medical and charity models present ‘one of the main remaining challenges regarding the persistence of disability-based discrimination’,144 this represents a substantial disagreement regarding the interpretation of Article 5. Second, the Committee critiqued public authorities as ‘acquiescen[t]’ to persistence discrimination against PWDs, and stated that disability-based discrimination is often ‘justified’ as in the best interest of PWDs rather than being recognized as a violation of the Convention.145 This statement, read together with the draft comment’s disapproval of the medical model and charity model and the insistence that PWDs retain their legal capacity at all times,146 presents a strong critique of current state practice. Further, it could be read as a warning to states parties that practices classified as helpful to PWDs 140 Draft General Comment (n 11). After this chapter was completed, a General Comment on Article 5 was adopted, and can be found at . The analysis in this chapter is based on the draft comment, which is very similar to, but not exactly the same as, the final General Comment. 141 ibid para 2. 142 ibid. 143 See Australian Government, Submission to the Committee on the Rights of Persons with Disabilities: Draft General Comment on the Right of Persons with Disabilities to Equality and Non-discrimination (Article 5) (15 November 2017) paras 8–9, available at: ; Government of the United Kingdom and Northern Ireland, Submission to the Committee on the Rights of Persons with Disabilities: Draft General Comment on the Right of Persons with Disabilities to Equality and Non-discrimination (Article 5) (30 November 2017) para 8, available at: ; cf Defensoria del Pueblo Colombia, Submission to the Committee on the Rights of Persons with Disabilities: Draft General Comment on the Right of Persons with Disabilities to Equality and Non- discrimination (Article 5) (30 June 2017), available at: ; Royal Thai Government, Submission to the Committee on the Rights of Persons with Disabilities: Draft General Comment on the Right of Persons with Disabilities to Equality and Non-discrimination (Article 5) (2017), available at: . 144 145 146 Draft General Comment (n 11) para 2. ibid para 4. ibid para 54.
Corsi
156
Equality and Non-Discrimination
will be under scrutiny as harmful and to be eliminated. This sentiment was also expressed in submissions in response to the draft comment. For example, Fredman et al argued that ‘measures that on the surface appear to enhance equality might in practice reinforce inequalities’.147 Such a framing indicates a significant clash between present domestic law and the legal change needed to come into compliance with the CRPD. How states parties, as opposed to the Committee, will interpret article 5 is a key issue, given that the CRPD’s ‘potential to improve the lives of people with disabilities . . . will depend ultimately on if and how the CRPD is incorporated into domestic law’.148 Third, the Committee noted that the CRPD mentions ‘dignity’ more than any other IHRL convention and that the understanding that all human beings are equal in worth and dignity is the foundation for the enjoyment of equal rights.149 Indeed, the treaty references dignity nine times.150 This focus on dignity builds on the 1975 General Assembly Declaration on the Rights of Disabled Persons, which stressed that ‘Disabled persons have the inherent right to respect for their human dignity’ and elaborated that this means ‘the same fundamental rights as their fellow-citizens of the same age, which implies first and foremost the right to enjoy a decent life, as normal and full as possible’.151 In this earlier formulation, dignity was linked to the full enjoyment of fundamental rights, and the CRPD expands the legal import of dignity as the basis of equality. The convention’s emphasis on dignity could be crucial for achieving substantive equality and transformative equality.152 Dignity could be particularly important when addressing socio-economic rights and redressing past disadvantages.153 Further, using Feldman’s four-part typology of substantive equality,154 fighting indignity plays a key role in states parties’ obligations to address harmful stereotypes in culture and media.155 Thus, the CRPD’s unique emphasis on dignity creates a context for a more expansive, substantive, and transformative version of equality than previously seen in IHRL. Fourth, the Committee highlighted that: Equality and non-discrimination are at the heart of the Convention and run like a golden thread through all its substantive articles via the phrase ‘on an equal basis with others’. It links all substantive rights of the Convention to the non-discrimination principle.
This underscores the importance of article 5 to the entirety of the treaty. Defining what ‘on an equal basis with others’ means will be essential for giving effect to the many substantive provisions within the Convention. ‘On an equal basis with others’ is not a phrase 147 Oxford Human Rights Hub, Achieving Transformative Equality for Persons with Disabilities: Submission to the CRPD Committee for General Comment No 6 on Article 5 of the UN Convention on the Rights of Persons with Disabilities, (2017), available at: . 148 Arlene S Kanter, The Development of Disability Rights Under International Law: From Charity to Human Rights (Routledge 2015) 2. 149 Draft General Comment (n 11) para 7. 150 CRPD (n 2) Preamble paras (a), (h), and (y); Art 1 (Purpose); Art 3(a) (General Principles); Art 8(a) Awareness-raising; Art 16(4) (Freedom from exploitation, violence, and abuse); Art 24(1)(a) (Education); and Art 25(d) (Health). 151 UNGA Res 3447 (XXX) (9 December 1975) para 3. 152 See eg Evadné Grant, ‘Dignity and Equality’ (2007) 7 HRL Rev 299, arguing that South Africa’s constitutional emphasis on dignity has formed an essential building block for realizing substantive and transformative equality in meaningful and practical ways. 153 See eg Joan Small and Evadné Grant, ‘Dignity, Discrimination, and Context: New Directions in South African and Canadian Human Rights Law’ (2005) 6 HR Rev 25. 154 Sandra Fredman, ‘Substantive Equality Revisited’ (2016) 14 Intl J Const L 712. 155 Fredman et al (n 148) 6.
Corsi
Article 5
157
that appears in article 5. Nevertheless, defining ‘equal before and under the law’ and ‘equal protection and equal benefit of the law’ will help to clarify the meaning of ‘on an equal basis with others.’ Similarly, bearing in mind the need to achieve the various substantive rights ‘on an equal basis with others’ should inform the interpretation of equality in article 5. Like dignity, ‘on an equal basis’ with others is more about substantive and transformative equality than it is about formal equality.156 It is in this context that the analysis of article 5’s four paragraphs should be understood. Finally, it is worth noting that the first three paragraphs of article 5 appear to be ‘autonomous norms’ because ‘they guarantee non-discrimination not only in the context of other rights but in general’,157 whereas paragraph four might be interpreted as a ‘subordinate norm’, ‘prohibit[ing] discrimination only in the enjoyment of the rights and freedoms otherwise set forth in the respective instrument’.158 After all, specific measures are only necessary to ensure the full enjoyment of other rights within the CRPD, including equality as articulated in article 5. Such measures have little meaning without reference to both the broader and more specific goals of the CRPD. In contrast, the rights enshrined in paragraphs 1–3 are stand-alone rights. Questions regarding the obligatory nature of paragraph 4 can be answered with reference to article 5’s other provisions.
5. Paragraph 1 Paragraph 1 can be broken into 5 key parts: 1 ) 2) 3) 4) 5)
all persons are equal before . . . the law all persons are equal . . . under the law and are entitled without discrimination to the equal protection and equal benefit of the law.
The language ‘all persons are equal before the law’ has appeared in other IHRL documents,159 the jurisprudence of which can help shed light on how this will be interpreted at the CRPD. Generally speaking, ‘equal before the law’ is interpreted as formal equality,160 which means sameness or consistency of treatment. The CRPD Committee commented that the phrase ‘is usually interpreted as meaning equal treatment by the judiciary or law enforcement officers’, thereby prohibiting law enforcement officers and administrators from discriminating against PWDs.161 This is consistent with interpretation at other human rights bodies. Thus, ‘before the law’ appears very literal in meaning. That is to say,
156 See Broderick (n 100) 92–95, noting that the CEDAW committee has interpreted this phrase to mean de facto equality, and that this phrase will mean equality in fact and the achievement of the same conditions for PWDs as for those in the ‘mainstream’. 157 Daniel Moeckli, ‘Equality and Non-Discrimination’ in Daniel Moeckli, Sangeeta Shah, and Sandesh Sivakumaran (eds) International Human Rights Law (2nd edn, OUP 2013) 162. 158 ibid 161. 159 UDHR Art 7; ICCPR Art 14(1) and Art 26; CERD Art 5(a), CEDAW Art 15. 160 eg Mexico made this assertion during the drafting sessions: ‘Daily Summary of Discussions Related to Article 7: Equality and Non-discrimination’ (25 May 2004), available at: ; see also Nowak (n 5) 605. 161 Draft General Comment (n 11) para 15, referencing CESCR, ‘General Comment 16’ (18 July 2005) UN Doc E/C12/2005/3 para 9.
Corsi
158
Equality and Non-Discrimination
it refers to sameness of treatment when a PWD comes ‘before the law’ via her interaction with state officials administering justice. Equality before the law continues to be a very real issue for PWDs, compounded at times by intersecting discrimination. Violations of the right to equality before the law may be driven by stereotyping, demonstrating an overlap between article 5 and article 8. This interpretation is supported by Draft General Comment No 6, which states that ‘[f ]ormal equality helps to combat negative stereotyping and prejudices’.162 The Committee has pointed out that the lack of awareness training and policies to prevent harmful stereotyping of women with disabilities by public officials, including police officers, prosecutors, and judges, can often lead to individual instances of violations of rights.163 This section of article 5(1) also interacts with the need for RAs in article 5(3), as well as accessibility in article 9 and freedom from violence in article 16. Disabled victims of violence may find it difficult to physically access police or be understood by them,164 and overlapping stereotypes and discriminatory attitudes can cause prosecutors or judges to be dismissive of the legal claims of PWDs, such as female PWDs reporting violence.165 Persons with intellectual disabilities may face unique discrimination before the law, for example by being treated as less credible witnesses.166 In this sense, it is clear that intersectionality will remain a key issue for equality and non-discrimination under the CRPD. Such discriminatory practices are particularly important given that the Optional Protocol to the CRPD, which allows individual communications to the Committee regarding claimed violations of the CRPD by states parties, requires the exhaustion of local remedies.167 This makes access to justice at the domestic level even more pressing, given that PWDs will need to thoroughly engage their local justice systems before they can request support from the Committee. Given this, the Committee will need to take a proactive stance regarding states parties’ monitoring and training of justice sector employees, and both awareness raising and direct involvement of PWDs will be helpful in this regard. Additionally, the continued prevalence of discrimination at all levels of justice systems globally implies that states should engage in a process of on-going consultation with PWDs on the presumption that violations may be on-going, at least until it can be established by the Committee that the legal system is fully equipped to provide access to justice to all PWDs. The phrase ‘equality under the law’ in article 5(1) does not appear in other IRHL conventions, and thus there is very little interpretative support for it in IHRL. The Committee has stated the following regarding this phrase: The travaux préparatoires reveal that this guarantee reflects the wording of section 15 (1) of the Canadian Charter of Rights and Freedoms. During the fifth negotiation sessions, the term was See para 10. CRPD Committee, ‘General Comment No 3’ (2016) UN Doc CRPD/C/GC/3 para 17(e). 164 UNHRC, ‘Thematic Study on the Issue of Violence against Women and Girls and Disability: Report of the Office of the United Nations High Commissioner for Human Rights’ UN Doc A/HRC/20/5 (2012) para 41. 165 ibid para 42. 166 See eg M Peled, G Iarocci, and DA Connolly, ‘Eyewitness Testimony and Perceived Credibility of Youth with Mild Intellectual Disability’ (2004) 48 J Intellectual Disability Res 699. 167 Art 2(d) of the Optional Protocol renders claims made without the exhaustion of local remedies inadmissible, with the possibility of exceptions ‘where the application of the remedies is unreasonably prolonged or unlikely to bring effective relief ’; Art 5 claims have been denied on this basis; see eg CRPD Committee, SC v Brazil Communication No 10/2013: Decision adopted by the Committee (28 October 2014) UN Doc CRPD/C/12/D/10/2013 para 6.5. 162 163
Corsi
Article 5
159
interpreted as demanding ‘strict respect for non-discrimination’. It appears, then, that ‘being equal under the law’ refers to the substance of the law as such. The law itself shall be equal in the sense that all groups of a given society are treated fairly under the law, that the legal standards are the same for all to whom they apply and that all persons in a given jurisdiction are included. Thus, the recognition that all persons with disabilities are equal under the law means that there should be no laws that allow for specific denial, restriction or limitation of the rights of persons with disabilities, and that disability should be mainstreamed in all legislation and policies.168
This interpretation thus refers to the content of the law rather than the practices of justice system officials. It creates several effects, including review of all laws and removal of any direct discrimination. This is consistent with how the phrase ‘equal protection under the law’ has been interpreted in US constitutional law, for example by prohibiting laws that allow racial segregation169 or deny equal access to institutions such as marriage.170 However, ‘equal before the law’ has also been interpreted as referring to the content of the law, with the Human Rights Committee (HRC) stating in a General Comment on ICCPR Article 26 that ‘when legislation is adopted by a state party, it must comply with the requirement of article 26 that its content should not be discriminatory’.171 If this is the case, it is not clear what ‘under the law’ would add. This redundancy could imply that, in contrast to the Committee’s above mentioned interpretation, ‘under the law’ is meant to refer to substantive rather than formal equality, and to include indirect as well as direct discrimination. The Committee’s comment regarding mainstreaming supports this, because mainstreaming requires drafters to actively assess the implications of any new laws or policies upon PWDs, and this goes beyond the mandate to remove direct discrimination from existing law. Mainstreaming is also equally impactful on both direct and indirect inequality, as it is concerned with the lived experience of PWDs.172 There is therefore an argument that the initial phrasing in article 5(1) prohibits both direct and indirect discrimination. ‘Direct discrimination occurs when a person, on account of one or more of the prohibited grounds, is treated less favourably than someone else in comparable circumstances.’173 In contrast, ‘[i]ndirect discrimination occurs when a practice, rule, or requirement that is outwardly “neutral”, that is not based on one of the prohibited grounds of distinction, has a disproportionate impact on particular groups defined by reference to one of these grounds. Thus, although there is no difference in treatment, due to structural biases, treating unequals equally leads to unequal results.’174 Indirect discrimination has been recognized by multiple IHR treaty bodies,175 and jurisprudence on the topic would support a broad interpretation of ‘under the law’ in article 5(1). Draft General Comment (n 11) para 16 (internal citations omitted). Brown v Board of Education of Topeka, 347 US 483 (1954). 170 Obergefell v Hodges, 576 US ___(2015). 171 UNHRC, ‘General Comment No 18: Non-discrimination’ (10 November 1989) UN Doc HRI/GEN/ 1/Rev 9 (Vol I) 195 para 12. 172 See eg UN ‘Report of the Economic and Social Council for 1997’ (18 September 1997) UN Doc A/52/ 3, defining gender mainstreaming. 173 174 Moeckli (n 157) 164. ibid 165. 175 See eg UNHRC, Singh Bhinder v Canada, Communication No 208/1986: Views (9 November 1989) UN Doc CCPR/C/37/D/208/1986; Althammer v Austria, Communication No 998/ 2001: Views (8 August 2003) UN Doc CCPR/C/78/D/998/2001; CERD Ctee, ‘Concluding Observations’ (21 May 2002) UN Doc CERD/C/60/CO/6 (Solomon Islands); CERD Ctee, ‘Report of the Committee on the Elimination of Racial Discrimination’ UN Doc A/56/18 (21 May 2002) para 350 (Trinidad and Tobago); CERD Ctee, ‘Concluding Observations’ (10 December 2004) UN Doc CERD/C/65/CO/4 para 16 (Madagascar); CESCR, ‘Concluding 168 169
Corsi
160
Equality and Non-Discrimination
In this sense, ‘under the law’ could mean ‘as affected by the law,’ an interpretation that recognizes lived experience. After all, many laws that in no way directly address disability will affect PWDs, and the actual experience of PWDs is a central theme of the CRPD. Further, this understanding of ‘equality under the law’ makes sense given that the phrase is immediately followed by ‘entitled without discrimination to the equal protection’ of the law. This is because equal protection has been interpreted not only as removing discriminatory laws, but also as requiring consultation between government and affected groups to achieve this aim.176 Given CRPD Article 4(3)’s instruction that states parties must consult with and involve PWDs in the development and implementation of legislation and policy, it would be reasonable to read the second, third, and fourth part of 5(1) as requiring both mainstreaming and a focus on direct and indirect, as well as de jure and de facto, equality. Finally, the phrase ‘equal benefit of the law’ further extends the substantive and positive equality obligations of article 5(1). Like ‘under the law,’ the phrase ‘equal benefit of the law’ is Canadian in origin. Both the Committee and Broderick have examined Canadian jurisprudence regarding the phrase to conclude that it requires states parties to take positive measures to ensure PWDs are enjoying the substantive gains that certain laws aim to provide, for example equal access to government services, which may requires RAs.177 In practice if not via this exact language, multiple human rights bodies have come to the conclusion that states have an ‘obligation to promote, guarantee, and secure equality by taking proactive steps to eliminate structural patterns of disadvantage and to further social inclusion’.178 In this sense, ‘equal benefit of the law’ is a prime example of article 5’s promotion of transformative equality, as it addresses both inclusion and the obligation on states to achieve this inclusion. It is also a further indication that the onus should be on states parties to demonstrate that their laws and legal officials are achieving the myriad meanings of equality enshrined in 5(1), given that any benefits drafters intended the law to construe should be demonstrated to accord equally to PWDs.
6. Paragraph 2 Building on similar provisions in CERD and CEDAW, paragraph 2 renders disability a prohibited ground for discrimination. Article 5(2) must be read together with article 2, which defines ‘discrimination on the basis of disability’. Observations’ (1 December 2000) UN Doc E/C/12/1/Add.54 para 22 (Belgium); CESCR, ‘Concluding Observations’ (30 May 1994) UN Doc E/C.12/1994/4 para 12 (Romania); CEDAW Ctee, ‘Report of the Committee on the Elimination of Discrimination against Women’ (20 March 2003) UN Doc A/58/38 (Part II) para 358 (Japan); CEDAW Ctee, ‘Report of the Committee on the Elimination of Discrimination against Women’ (17 August 2000) UN Doc A/55/38 (Part II) para 91 (Moldova); CEDAW Committee, ‘Report of the Committee on the Elimination of Discrimination against Women’ UN Doc A/53/38/Rev 1 (Part II) (21 May 2002) para 319 (Peru). 176 See eg CEDAW Committee, ‘Report of the Committee on the Elimination of Discrimination against Women’ UN Doc A/57/38 (Part II) (2 May 2002) para 191. 177 See Draft General Comment (n 11) para 18; Broderick (n 100) 87–91. 178 Moeckli (n 157) 170, referencing CERD (n 47) arts 2(1)(e), 2(2) and 7; UNHRC, ‘General Comment 4’ (1981) UN Doc HRI/GEN/1/Rev 9 (Vol I) 175, para 2; General Comment No 18 (n 171) paras 5 and 10; CEDAW (n 50) arts 3 and 5; CERD Ctee, ‘General Recommendation XXIX’ (1 November 2002) UN Doc HR/GEN/1/Rev 9 (Vol II) 296, paras 5, 6, 8, 9, 17, 33–35; Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Women in Africa, Arts 2(1)(e), 2(2) and 3–24.
Corsi
Article 5
161
Article 2 explains that: ‘Discrimination on the basis of disability’ means any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including denial of reasonable accommodation.
The phrase ‘on an equal basis with others’ will be important for securing substantive and transformative equality, as it should guarantee practical effects that positively impact the lived experience of PWDs. Equally important is the breadth of the above protection: it sweepingly covers all human rights and all fields, as well as all forms of discrimination. This is but one of the ways the CRPD is more expansive than previous IRHL: its refusal to demarcate grounds and its tendency to make protections as broad and open ended as possible. The above definition of ‘on the basis of discrimination’ thus allows for dozens or even hundreds of possible permutations. The Committee further elaborated discrimination as comprising five categories: 1) direct; 2) indirect; 3) denial of reasonable accommodation; 4) harassment; and 5) intersectional discrimination. Regarding intersectional discrimination, a particularly lauded and yet still developing aspect of the CRPD, the Committee has stated that ‘[a]ll group members are individuals with multiple layers of identities, statuses and life circumstances. Inclusive equality provides for a new concept, which takes into account individual, and structural as well as intersectional discrimination and power relations.’179 Regarding RAs, their inclusion here as a specific form of discrimination strengthens the likelihood that they will be fulfilled, but additional considerations such as margin of appreciation and progressive realization for developing countries may offset this benefit. Broader than paragraph 1 but similar in objective, paragraph 2 requires states to refrain from any discriminatory action, including but not limited to laws and policies. Further, it imposes a duty on states to prevent discrimination by non-state actors.180 This is particularly important in the disability context, where discrimination by private actors tends to be narrowly conceptualized, for example as limited to education or employment.181 Satz describes this phenomenon as ‘fragmentation’ and argues that it ‘is perhaps the most significant barrier to addressing disability discrimination under the current civil rights approach’.182 Similarly, Bagenstos notes that ‘many individuals with disabilities face significant barriers to employment that operate well before they are ever in a position to be discriminated against by an employer’.183 These comments underscore the need to conceptualize disability as a constant part of life, rather than occurring in specific pockets. It also urges the perspective of PWDs rather than duty bearers, whose interaction with disability might be limited to episodic or narrow situations. Thus, state obligations to prevent third party discrimination must be viewed as broadly and pragmatically as possible, so as to capture the full ambit of the lived experience of disability discrimination, and correspondingly to remove as many of these barriers as possible. Beyond the ‘obligation to respect,’ which ‘requires states 180 Draft General Comment (n 11) para 10. Moeckli (n 157) 170. Eilionóir Flynn, From Rhetoric to Action: Implementing the UN Convention on the Rights of Persons with Disabilities (CUP 2011) 412. 182 A Satz, ‘Disability, Vulnerability and the Limits of Antidiscrimination’ (2008) 83 Washington L Rev 513, 533. 183 Samuel R Bagenstos, Law and the Contradictions of the Disability Rights Movement (Yale UP 2009) 128. 179 181
Corsi
162
Equality and Non-Discrimination
to refrain from any discriminatory action and to ensure that all their laws and practices comply with the right to non-discrimination’,184 Article 5(3) obligates states parties to take positive measures. For example, removing employment discrimination could require positive measures such as ‘assistant services, assistive technology, structural modifications to homes, and accessible transport’.185 Thus, while ‘Article 5 and 4 (1) (a) CRPD demand that States parties adopt anti-discrimination legislation that is both, comprehensive and specific’,186 legislation alone won’t be enough; practical steps are required. Similarly, the phrase ‘equal and effective legal protection’ requires ‘effective legal remedies’187 and could be read together with article 12(3)’s direction that ‘States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity’ as requiring proactive positive measures including regarding non-state actors. Article 5(2)’s interaction with article 12 in this regard opens up the debate between those that advocate that PWDs have full legal capacity at all times,188 and those that see benefits to limited guardianship systems.189 The key question is which perspective affords the most ‘equal and effective legal protection’. The Committee and States Parties have clashed strongly on this topic in the development of a General Comment on Article 5, with the Committee taking a harder line view on the inviolability of legal capacity under the convention,190 and States Parties arguing for limited exceptions currently recognized under domestic regimes.191 This part of article 5(2) must also be read together with article 13 regarding access to justice, and article 9 regarding accessibility, as equal and effective legal protection cannot be achieved without it. This might mean the provision of RAs, financial support, diverse communication methods, and more.192 Unlike RAs, positive measures taken to ensure access to justice will not be subject to a proportionality test.193 An area of controversy regarding article 5(2) is the interaction between abortion rights and discrimination against disabled foetuses. Some advocacy groups have taken the position that article 5(2) should result in a ban on the abortion of disabled foetuses,194 on the basis that such abortions are ‘a violation of respect for difference and acceptance of Moeckli (n 157) 170. 185 Flynn (n 181) 413, citing Bagenstos (n 183) 128. 187 Draft General Comment (n 11) para 33. ibid para 23. 188 Eilionóir Flynn and Anna Arstein-Kerslake, ‘Legislating Personhood: Realising the Right to Support in Exercising Legal Capacity’ (2014) 10 Intl J L Context; Michael Bach and Lana Kerzner, A New Paradigm for Protecting Autonomy and the Right to Legal Capacity (Law Commission of Ontario 2010); Quinn and Arstein-Kerslake (n 3). 189 See eg Adrian Ward, ‘Adults with Incapacity: Freedom and Liberty, Rights and Status: Part 1’ [2011] Scots Law Times 21; Nina A Kohn and Jeremy A Blumenthal, ‘A Critical Assessment of Supported Decision- making for Persons Aging with Intellectual Disabilities’ (2013) 7 Disability & Health J S40. 190 Draft General Comment (n 11) paras 54–57. 191 See eg Government of the United Kingdom and Northern Ireland (n 144) para 26; Submission of the Netherlands, Submission to the Committee on the Rights of Persons with Disabilities: Draft General Comment on the Right of Persons with Disabilities to Equality and Non-discrimination (Article 5) (2017), available at: paras 3–4. 192 193 Draft General Comment (n 11) paras 58–60. ibid para 58. 194 See eg ADF International, Submission to the Committee on the Rights of Persons with Disabilities: Draft General Comment on the Right of Persons with Disabilities to Equality and Non-discrimination (Article 5) (30 November 2017), available at: ; and Care, Submission to the Committee on the Rights of Persons with Disabilities: Draft General Comment on the Right of Persons with Disabilities to Equality and Non-discrimination (Article 5) (2017), available at: . 184 186
Corsi
Article 5
163
persons with disabilities as part of human diversity’.195 Some organizations go so far as to condemn such abortions as ‘infanticide . . . as a violation to the life of the disabled newborns’.196 This directly contradicts settled IHRL. For example, the HRC does not recognize foetuses as protected under the right to life, but it does recognize that a woman’s right to access abortion is protected under this right.197 The HRC has also established that the failure to ensure access to abortion is a violation of the ICCPR, and could amount to cruel and inhuman treatment.198 Importantly, abortion bans can amount to a violation of equal treatment,199 an interpretation that has been expanded upon by the CEDAW committee.200 This puts readings of article 5(2) that call for abortion bans on an equality basis in direct conflict with pre-existing IHRL. Additionally, arguments banning abortion are incompatible with the CRPD’s emphasis on autonomy. Quinn has noted that the CRPD embodies ‘a radical rebalancing of protection versus the autonomy of the individual’ and further that ‘[i]n the past persons with disabilities were stripped of the right to make decisions for themselves.’201 He further argues that ‘[t]he stakes are high. The right to make decisions for oneself—to chart one’s own life path—without interference from third parties or the state is considered the foundation stone and greatest achievement of liberal and political philosophy. It flows from one’s recognition as a person before the law.’202 Autonomy is similarly at the heart of a woman’s right to access abortion, and her right to chart the course of her life.203 Correspondingly, she does not have to justify her decisions to anyone, meaning that it is within her rights to abort a foetus on the basis of disability, or for any reason at all, or for no reason at all. Additionally, ‘Article 12 [of the CRPD] is closely analogous to Article 15 of CEDAW’,204 in that both call for full legal capacity and address a shared legacy of paternalism. Given these core legal principles, 195 Ordo Iuris, Submission to the Committee on the Rights of Persons with Disabilities: Draft General Comment on the Right of Persons with Disabilities to Equality and Non-discrimination (Article 5) (28 November 2017) 3, available at: . 196 See European Centre for Law and Justice, Submission to the Committee on the Rights of Persons with Disabilities: Draft General Comment on the Right of Persons with Disabilities to Equality and Non-discrimination (Article 5) (30 November 2017) 3, available at: , and Minnesota Citizens Concerned for Life Submission to the Committee on the Rights of Persons with Disabilities: Draft General Comment on the Right of Persons with Disabilities to Equality and Non-discrimination (Article 5) (November 2017) 2, available at: . 197 HRCte, ‘Draft General Comment No 36—Article 6: Right to Life’ (2017) para 9, available at: . 198 HRCtee, KL v Peru, Communication No 1153/2003: Decision (22 November 2005) UN Doc CPR/C/ 85/D/1153/2003; HRCtee, LMR v Argentina, Communication No 1608/2007: Views (28 April 2011) UN Doc CCPR/C/101/D/1608/2007 para 9.2. 199 HRCtee, Mellet v Ireland, Communication No 2324/2013: Views (9 June 2016) UN Doc CCPR/C/ 116/D/2324/2013 paras 7.4–7.11. 200 CEDAW Ctee, ‘General Recommendation No 24: Article 12 of the Convention (Women and Health)’ (1999) UN Doc A/54/38/Rev 1 Ch 1; Carmel Shalev, ‘Rights to Sexual and Reproductive Health—The ICPD and the Convention on the Elimination of All Forms of Discrimination Against Women’, paper presented at the International Conference on Reproductive Health, Mumbai, 15–19 March 1998, available at: . 201 202 Quinn and Arstein-Kerslake (n 3) 41. ibid. 203 See Facio Alda et al, Women’s Autonomy, Equality and Reproductive Health in International Human Rights: Between Recognition, Backlash and Regressive Trends (OHCHR 2017), available at: . 204 Quinn and Arstein-Kerslake (n 3) 42.
Corsi
164
Equality and Non-Discrimination
essential to both equality and non-discrimination, it is unthinkable that the CRPD’s equality provisions could be used to discriminate against access to abortion. Further, while some of the arguments for such a ban have merit, such as those that highlight continued prejudice against PWDs and the devaluation of the lives of PWDs, in practice, bans on selective abortions, such as sex selective abortion, don’t work.205 Instead, women resort to unsafe practices, endangering the life and health of the mother, which could result in disabilities as a consequence. The CRPD Committee has not addressed abortion directly in its Draft General Comment on Article 5. It should do so, reiterating the shared values of equality and autonomy between the right to abortion and disability rights, and the unique—and intersectional—needs of disabled women in this regard.
7. Paragraph 3 While drafting history reveals that many states opposed linking equality and RAs because they feared it would open the door to redistribution and greater obligations to fulfil socio-economic rights,206 article 5(3) nevertheless mandates that states parties ensure the provision of RAs, and the Committee promotes RAs as ‘an intrinsic part of the duty of non-discrimination in the context of disability’.207 In many ways, article 5(3) is a rebalancing of the burdens of disability and a reconceptualization of disability itself. ‘[I]t tips states away from a “deficits-oriented” perspective on disability and towards one that views fragility as a universal aspect of the human condition and remediable with sufficient supports.’208 As such, it rehumanizes PWDs in the eyes of the law, and via the greater inclusion achievable once RAs are in place. Article 5(3) must be read together with article 2, which defines RAs as: necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms.
The provision of RAs is also closely linked to accessibility as articulated in article 9, but distinct insofar as RAs are tailored to individual needs and specific contexts, and accessibility refers to groups and must be provided before PWDs seek access.209 RAs can take many forms. Examples ‘include making existing facilities and information accessible to the individual person with a disability; modifying equipment; reorganizing activities; rescheduling work; adapting curricula and learning materials; adjusting medical procedures; implementing specific medication modalities; or enabling access to support personnel’.210 The Committee has stressed that ‘disproportionate or undue burden’ is one concept,211 205 See eg Bela Ganatra, ‘Maintaining Access to Safe Abortion and Reducing Sex Ratio Imbalances in Asia’ (2008) Reprod. Health Matters 16 (31 Supp) 90, 96; Madhu Kishwar, ‘Abortion of Female Fetuses: Is Legislation the Answer?’ (1993) 1 Reprod. Health Matters 113, 114; Johanna Westeson, ‘IntLawGrrls: Rights- Based Approach to Sex-Selection’ (Center for Reproductive Rights, 23 January 2012), available at: . 206 Equal Rights Trust, ‘Promoting a Paradigm Shift’ (2008) 2 Equal Rts Rev 82. 207 Draft General Comment (n 11) para 24, referencing CESCR, ‘General Comment No 5: Persons with Disabilities’ (1994) UN Doc E/1995/22 para 15. 208 209 Quinn and Arstein-Kerslake (n 3). Draft General Comment (n 11) para 25. 210 ibid citing ‘Report of the Office of the United Nations High Commissioner for Human Rights, Equality and Non-discrimination under Article 5 of the Convention on the Rights of Persons with Disabilities’ (9 December 2016) UN Doc A/HRC/34/26 para 28. 211 Draft General Comment (n 11) para 26.
Corsi
Article 5
165
and shown itself willing to find that states parties had not met this threshold for denying RAs.212 Additional interpretive notes stress that ‘reasonable’ should be understood as referring to effectiveness, rather than as an exception clause related to cost.213 Many of the rights enshrined in the CRPD will require RAs to achieve full implementation. For example, article 4(3)’s innovate right of PWDs to be actively involved in any public policy process that will impact them could be meaningless without RAs in place to ensure participation is possible. At the same time that the provision or lack thereof of RAs may impact all other convention rights, the Committee has clarified the distinctions not only between RAs and accessibility, but also between RAs and specific measures, RAs and support needed to live independently per article 19, and RAs and assistance that may be needed to exercise legal capacity or access to justice per article 12.214 These conceptual and practical distinctions could be very important, particularly relative to the ‘margin of appreciation’ afforded to states parties regarding how or if they provide RAs.215 Additionally, separating RAs from other positive measures removes the possible excuse of disproportionate or undue burden from positive measures distinguished from RAs. Thus, distinguishing RAs in this way serves to increase state responsibility. A key issue for RAs will be interpreting the breadth and scope of ‘margin of appreciation’, a concept that has been very important for the European Court of Human Rights (ECtHR), but that has been rejected by international human rights bodies such as the HRC.216 On some occasions, employing the margin at the European Court had favourable outcomes for the duty holder, while refusing to employ the margin at the HRC in almost identical cases resulted in a win for the rights holder.217 This implies that the broadest possible human rights protections auger against such a margin, and, considering how expansive the CRPD is and how closely article 5 is linked to article 26 of the ICCPR, that a margin of appreciation analysis would undermine RAs, equality, and the purpose of the treaty. Nevertheless, the majority opinion in Jungelin supports such an analysis, and subsequent cases have confirmed that the Committee will afford states a margin.218 What is wholly unclear, however, is how the CRPD is interpreting margin of appreciation and what the contours of this margin entail. There are more questions than answers regarding RAs and the margin of appreciation at the CRPD Committee. For example, how is the CRPD Committee applying the ‘margin of appreciation’ test, and how should it do so? The question arises of whether the notion of the ‘margin of appreciation’ is the same in respect of RAs under the CRPD and either the concept as applied by the HRC and/or the ECtHR. There may be important 212 See CRPD Committee, HM v Sweden, Communication No 3/2011: Views adopted by the Committee (21 May 2012) UN Doc CRPD/C/7/D/3/2011. 213 214 Draft General Comment (n 11) para 26. ibid. 215 ‘[W]hen assessing the reasonableness and proportionality of accommodation measures, State parties enjoy a certain margin of appreciation’: CRPD Committee, Jungelin v Sweden, Communication No 5/ 2011: Views adopted by the Committee (14 November 2014) UN Doc CRPD/C/12/D/5/2011 para 10.5. 216 HRCtee, ‘General Comment No 34 Article 19: Freedoms of opinion and expression’ (12 September 2011) UN Doc CCPR/C/GC/34 para 16. 217 Dominic McGoldrick, ‘A Defence of the Margin of Appreciation and an Argument for its Application by the Human Rights Committee’ (2016) 65 ICLQ 21, 46–47. 218 See CRPD Committee, Beasely v Australia Communication No 11/ 2013: Views adopted by the Committee (25 May 2016) UN Doc CRPD/C/15/D/11/2013 para 8.4 and CRPD Committee, Lockrey v Australia Communication No 13/2013: Views adopted by the Committee (30 May 2016) UN Doc CRPD/ C/15/D/13/2013 para 8.4.
Corsi
166
Equality and Non-Discrimination
conceptual distinctions, given that RAs are from the outset an individually-oriented measure, whereas within the ECtHR and HRC systems, complaints tend to be raised about how laws or policies of general application have effect in individual cases. Draft General Comment No 6 does not address the margin of appreciation, and the three cases through which the CRPD has confirmed the application of the margin say almost nothing about it. It seems clear that certain aspects of the ECtHR’s approach to margin of appreciation clash with the CRPD, such as the tendency to allow states to circumscribe minority rights or the fact that ‘consensus’ as a justification for the margin219 would likely be laden with discriminatory stereotypes in the disability context. Thus, the concept of a margin of appreciation regarding RAs likely erodes rights protections under the CRPD. Similarly, there is a question of whether developing nations should be afforded a margin of sorts, allowing a more progressive realisation of RAs. For example, Mauritius and Suriname have both entered reservations along these lines, Mauritius regarding accessibility under Article 9220 and Suriname citing financial burdens as a reason to bypass multiple rights within the treaty. Because the burden of RAs on duty bearers can be assessed as financial cost,221 developing nations may successfully argue that they are incapable of providing crucial RAs. Complicating this, while some advocacy groups argue for the former,222 it is unclear whether or not paragraph 3 should be considered to have immediate effect or conversely whether it can be progressively realized. In many ways, providing RAs in developing countries could be a challenging affair, with the extremes of heavy financial burdens on states and the nullification of the right due to financial limitations both harmful outcomes. The CRC Committee’s commentary on the need for all states to apportion their budgets to give maximum effect to disability rights, and their direction that developed nations should share information, seems particularly relevant here. While they have not yet addressed the issue explicitly, the CRPD Committee could similarly call for a North-South technology exchange to facilitate RAs, and could establish sub-committees, working groups, or a fund to achieve this. Further, multiple actors have been attempting to solve this problem, resulting in guidance and case studies from developing countries and the aid context.223 And, some studies suggest that developing country status is not always a substantial barrier to implementing measures toward equality.224 In the end, principles of distributive justice and equal participation should outweigh the randomness of McGoldrick (n 217). Republic of Mauritius, ‘Implementation of the UN Convention on the Rights of Persons with Disabilities: Initial report submitted by States parties under Article 35 of the Covenant’ (Disability Empowerment Unit, Government of Mauritius 2012) 7. 221 Draft General Comment (n 11) paras 26–27. 222 See eg International Disability Alliance, Submission to the Committee on the Rights of Persons with Disabilities: Draft General Comment on the Right of Persons with Disabilities to Equality and Non-discrimination (Article 5) (2017), available at: . 223 See eg Johan Borg, Anna Lindström, and Stig Larsson, ‘Assistive Technology in Developing Countries: National and International Responsibilities to Implement the Convention on the Rights of Persons with Disabilities’ (2009) 3 Lancet 274; Julie Abimanyi-Ochom and Hasheem Mannan, ‘Uganda’s Disability Journey: Progress and Challenges’ (2014) 3(1) African J Disability; Nur Amirah Abd Samad, Universal Design Approach for an Accessible Built Environment Through Legislation for Effective Implementation in Malaysia, Research Proposal for Faculty of Built Environment, Universiti Teknologi Malaysia, May 2017, available at: . 224 Brent C Elder, Michelle L Damiani, and Benson O Oswago, ‘From Attitudes to Practice: Utilising Inclusive Teaching Strategies in Kenyan Primary Schools’ (2016) 20 J Inclusive Education 413. 219 220
Corsi
Article 5
167
birth location, particularly given that poverty could cause or exacerbate disability, making solutions for developing countries an even more urgent necessity. True equality of results under the CRPD requires global application and cooperation. Additional issues include the need to clarify RAs in the context of the private sector;225 the benefits of reconceptualizing RAs as duties to be proactively considered rather than leaving the impetus to PWDs ex post;226 the need to clarify the relationship between RA costs borne by the individual and by the duty bearer so as not to unduly burden PWDs;227 that RAs might include subsidies;228 the notion that ‘unjustifiable hardship’ in the provision of RAs is a concept that embodies negative stereotypes about PWDs;229 the need to clarify that the burden of proof regarding an undue burden when providing RAs rests entirely with the duty bearer;230 that rights holders and disability experts not duty bearers should hold the power in deciding if RAs are needed and what type of RAs will be effective;231 and many, many more. It is clear that RAs are a contentious area, in multiple regards. Thus, the content of the General Comment on Article 5 and future decisions of the Committee must be watched closely to ensure that the questions and controversies related to RAs do not hinder the full equality and full inclusion of PWDs.
8. Paragraph 4 Because formal equality means ‘the state should not give preference to any one group and that people should be treated exclusively on their individual merits and regardless of group membership’,232 article 5(4) creates an exceptional basis for such preferences in order to achieve substantive equality. Thus, the Committee has stated that measures that ‘entail adopting or maintaining certain advantages in favour of an underrepresented, or marginalized group . . . [such as] outreach and support programs, allocation and/or 225 Global Alliance of National Human Rights Institutions, Submission to the Committee on the Rights of Persons with Disabilities: Draft General Comment on the Right of Persons with Disabilities to Equality and Non-discrimination (Article 5) (December 2017), available at: . 226 ibid. 227 International Federation of Hard of Hearing People, Submission to the Committee on the Rights of Persons with Disabilities: Draft General Comment on the Right of Persons with Disabilities to Equality and Non-discrimination (Article 5) (2017), available at: . 228 See Klagsverband zur Durchsetzung der Rechte von Diskriminierungsopfern, Submission to the Committee on the Rights of Persons with Disabilities: Draft General Comment on the Right of Persons with Disabilities to Equality and Non-discrimination (Article 5) (2017), available at: . 229 Queensland Advocacy Incorporated, Submission to the CRPD Committee: Draft General Comment on the Right of Persons with Disabilities to Equality and Non-discrimination (Article 5) (14 November 2017), available at: . 230 Children and Young People with Disability Australia, Submission to the CRPD Committee: Draft General Comment on the Right of Persons with Disabilities to Equality and Non-discrimination (Article 5) (November 2017), available at: . 231 Disability Discrimination Legal Service and Villamanta Disability Rights Legal Service Inc, Submission to the CRPD Committee: Draft General Comment on the Right of Persons with Disabilities to Equality and Non-discrimination (Article 5) (30 November 2017), available at: . 232 Moeckli (n 157) 159.
Corsi
168
Equality and Non-Discrimination
reallocation of resources, targeted recruitment, hiring and promotion, [and] quota systems’233 are acceptable under the CRPD if they serve to ‘accelerate or achieve de facto equality’.234 Given that CERD and CEDAW include similar provisions, the jurisprudence of these treaty bodies can serve as an interpretive aid to article 5(4). Additionally, it will be interesting to see how specific measures under art 5(4) interact with special measures under CEDAW and CERD, particularly given the CRPD’s emphasis on intersectionality. The Committee may wish to harmonise its interpretation of specific measures with those of other bodies to accord with intersectionality. Both the CERD and CEDAW committees have applied the so-called justification test developed by the HRC in the Belgian Linguistics Case, which states that different treatment must 1) pursue a legitimate aim, and 2) be proportionate.235 The HRC went on to confirm in General Comment No 18 on non-discrimination that ‘not every differentiation of treatment will constitute discrimination, if the criteria for such differentiation are reasonable and objective and if the aim is to achieve a purpose which is legitimate under the Covenant’.236 Further HRC jurisprudence on the topic expanded on the meaning of legitimate aims and proportionality.237 The CERD Committee relied on the justification test in both General Recommendation No 30 defining discrimination,238 and affirmed in General Recommendation No 14 that ‘differentiation of treatment will not constitute discrimination if the criteria for such differentiation, judged against the objectives and purposes of the Convention, are legitimate’.239 It also stated in General Recommendation No 32 that ‘the term “non- discrimination” does not signify the necessity of uniform treatment . . . if there is an objective and reasonable justification for differential treatment’.240 There is no reason to think that the CRPD Committee will depart from this test in its interpretation of article 5(4), although the Committee has not addressed justifications in this language, referring instead to inclusivity and structural discrimination.241 CEDAW’s General Recommendation No 25 on the topic notes that special measures should ‘accelerate the equal participation of women in the political, economic, social, cultural, civil or any other field’,242 opening up a broad scope of application. While the CRPD Committee notes that specific measures would redress past discrimination,243 it would do well to clarify as the CEDAW Committee has that proving past discrimination is not a prerequisite for specific measures.244 Similarly, while the draft comment notes
234 Draft Comment (n 11) para 29. ibid. Case Relating to Certain Aspects of the Laws on the Use of Languages in Education in Belgium (Belgian Linguistics Case) (No 2) (1968) 1 EHRR 252, 284 para 13. 236 General Comment No 18 (n 171) para 13. 237 HRCtee, Gillot v France, Communication No 932/2000: Views (15 July 2002) UN Doc A/57/40 270 para 13.2. 238 HRCtee, ‘General Recommendation No 30: Women in Conflict Prevention, Conflict and Post-conflict Situations’ (1 November 2013) UN Doc CEDAW/C/GC/30 para 4. 239 CERC Ctee ‘General Recommendation No 14: Definition of Discrimination’ (22 March 1993). 240 CERD Ctee, ‘General Recommendation No 32: The meaning and scope of special measures in the International Convention on the Elimination of All Forms Racial Discrimination’ UN Doc CERD/C/GC/32 (24 September 2009) para 8. 241 Draft General Comment (n 11) paras 29–31. 242 CEDAW Ctee, ‘Report of Committee on the Elimination of Discrimination against Women’ UN Doc A/59/38 (2004) Annex II (CEDAW General Recommendation No 25) para 18. 243 Draft General Comment (n 11) para 29. 244 CEDAW General Recommendation No 25 (n 242) para 18. 233 235
Corsi
Article 5
169
that such measures ‘are usually temporary in nature’,245 it could improve its treatment of the subject by elaborating that ‘[t]he duration of a temporary special measure should be determined by its functional result in response to a concrete problem and not by a predetermined passage of time’. 246 This would ensure compliance with the justification test and help the specific measures taken to achieve their equality goals. It is important to note that while the Committee uses the language of ‘preference’ when discussing specific measures, this position is both inaccurate and discriminatory, because it obscures existing privilege of dominant groups and assumes equality of opportunity.247 This impacts the question of whether or not specific measures are obligatory. The Committee has stated that, unlike RAs, specific measures are ‘generally not mandatory’, although it has acknowledged that particular situations may require specific measures.248 However, as the language of article 5(4) states, these measures may be ‘necessary’, and thus it is arguable that—dependent on context—failing to enact them could amount to discrimination.249 The necessity to enact specific measures could be exacerbated by the intractability of bias.250 The CRPD’s willingness to do something concrete about inequality rather than simply acknowledge it is something that sets it apart.251 Additionally, this interpretation would be in keeping with the CRPD’s dismantling of divisions between generations of rights,252 given that affirmative action cuts across all generations253 and applies to the private sector, as well.254 Thus, it is not surprising that some advocacy groups are urging the Committee to link positive obligations for achieving substantive equality and specific measures using language that makes the latter mandatory.255 Further, empirical data on what has achieved gender parity in the world’s most gender equal countries—Iceland, Norway, Finland, Sweden, Panama, Slovenia, Ireland, New Zealand, and more—demonstrates that specific measures such as quotas in both the public and private sphere may in fact be necessary to achieve equality and fight discrimination. The countries that have employed quotas boast the highest levels of gender parity. Global data demonstrates the efficacy of quotas in changing demographics in political representation and corporate boardrooms. Some case studies show further positive affects, such as increased confidence in police and higher crime reporting as a result, and more positive public investment by female as compared to male leaders.256 Other case studies indicate that quotas could undermine team cohesion and even increase negative stereotyping of people hired in relation to a quota system, although merit based criteria and an emphasis on fairness can counter this.257 Overall, quota systems—present in at least half of all countries in some form—have served to ‘boost the participation of well-qualified but previously underrepresented individuals’.258 Thus, the empirical outcomes and comparative data suggest that such specific measures are required, rather than optional. Draft General Comment (n 11) para 29. CEDAW General Recommendation No 25 (n 242) para 20. 247 See eg Carol Bacchi, ‘Policy and Discourse: Challenging the Construction of Affirmative Action as Preferential Treatment’ (2004) 11 J Euro Pub Pol 128. 248 249 Draft Comment (n 11) paras 30, 37. cf Australian Government (n 143) paras 1–3. 250 Iris Bohnet, What Works: Gender Equality by Design (Harvard UP 2016) 44–60. 251 252 Quinn and Arstein-Kerslake (n 3) 39. Heyer (n 26), 205. 253 Ginsburg, Ruth Bader; Merritt, Deborah Jones ‘Affirmative Action: An International Human Rights Dialogue’ Fifty-First Cardozo Memorial Lecture, Cardozo Law Review 21 Cardozo L Rev (1999–2000) 254. 254 Submission of Andrea Broderick and Lisa Waddington, para 7. 255 Submission of Equal Rights Trust, paras 20–24. 256 Anjani Datla, Women as Leaders: Lessons from Political Quotas in India (Harvard Kennedy School 2013). 257 258 Bohnet (n 250) 235–38. ibid 238. 245 246
Corsi
170
Equality and Non-Discrimination
Participation and inclusion are key aims of the CRPD and of transformative equality, and therefore quotas could be an effective ‘specific measure’ to achieve this. However, population demographics by sex or race have been easier to measure than disability. While the WHO estimates that 15 per cent of the global population is disabled,259 country specific data varies substantially, influenced by categorization of disability and methods of data collection.260 Thus, data issues may render quota systems more challenging for achieving equality for PWDs as compared to quota systems addressing more easily measured characteristics. On the other hand, promotion of quota strategies by the CRPD Committee and positive case studies from states parties who have successfully used quotas to achieve a higher rate of inclusion and participation of PWDs in both the public and private sphere could foster the workability of such schemes despite data complexities.
259
Corsi
World Disability Report (WHO 2011) 7.
260
ibid 21–31.
Article 6 Women with Disabilities . States Parties recognize that women and 1 girls with disabilities are subject to multiple discrimination, and in this regard shall take measures to ensure the full and equal enjoyment by them of all human rights and fundamental freedoms.
. States Parties shall take all appropriate 2 measures to ensure the full development, advancement and empowerment of women, for the purpose of guaranteeing them the exercise and enjoyment of the human rights and fundamental freedoms set out in the present Convention.
1. Introduction 2. Background 3. Travaux Préparatoires 4. Paragraph 1: Multiple Discrimination 5. Paragraph 2: Development, Advancement and Empowerment 5.1 ‘exercise and enjoyment of the human rights and fundamental freedoms set out in the present Convention’ 5.2 Interpretative Guidance
5.2.1 Article 16—Violence 5.2.2 Article 25—Health 5.2.3 Article 28—Standard of Living 5.2.4 Article 34—Committee on the Rights of Persons with Disabilities 5.2.5 Omissions
171 172 177 184 186 188 189 189 191 193 194 195
1. Introduction The Convention on the Rights of Persons with Disabilities (‘CRPD’ or ‘Convention’)1 is a milestone achievement for women and girls with disabilities, with its inclusion of a gender-sensitive approach and article 6, which speaks directly to gender-disability discrimination. Prior to the CRPD, most international human rights instruments failed to address both disability and gender in their provisions. Many instruments were attuned to either gender to the exclusion of disability, 2 or
* The authors are grateful to Michelle Legault for her skilful research assistance and Jami Lenis for attention to footnotes. 1 Convention on the Rights of Persons with Disabilities (adopted 13 December 2006, opened for signature on 30 March 2007, entered into force 3 May 2008) 2515 UNTS 3 (CRPD). 2 See eg the Convention on the Elimination of All Forms of Discrimination against Women, (adopted 18 December 1979, entered into force 3 September 1981) 1249 UNTS 13 (CEDAW). For an overview of various human rights principles and instruments that speak to women’s rights with respect to health, marriage, and parenting, see Roxanne Mykitiuk, Ena Chadha, ‘Sites of Exclusion: Disabled Women’s Sexual and
mykitiuk and chadha
172
Women with Disabilities
disability to the exclusion of gender.3 The recognition of the unique experiences of gender and disability-based discrimination animates the spirit behind several of the CPRD’s provisions and, specifically, the content of article 6: Women with Disabilities.4 The CRPD is the first instrument of its kind to focus on the multiple and compounding forms of discrimination experienced by women with disabilities and to mandate gender-sensitive measures in the guarantee of the human rights and fundamental freedoms set out in it.5 This chapter begins by canvassing the historical background and travaux préparatoires on article 6. It then reviews the text of article 6 and discusses the interaction between article 6 and other substantive articles of the CRPD. We will consider how article 6 and related articles have been interpreted by the UN Committee on the Rights of Persons with Disabilities (‘the CRPD Committee’) in its Concluding Observations to date and in General Comment No 3 on article 6. As is often the case with gender and disability achievements, the progress effectuated by article 6 was realized after decades of work and the success, while meaningful on paper, remains to be accomplished in reality.
2. Background Gender and disability have a relatively short history in the human rights arena. The appreciation that people with disabilities have full agency and are entitled to participate in society emerged more globally in the 1970s. In 1971, the United Nations adopted the Declaration on the Rights of Mentally Retarded Persons and, in 1975, the United Nations adopted the Declaration on the Rights of Disabled Persons.6 However, neither Declaration expressly distinguished between men and women, nor contemplated gender issues. At the outset of this decade, the historical view of disability as a matter of charity and the prevailing medicalized perspective of disability eclipsed any human rights conceptualization of how gender and disablement interfaced. In July 1975, the first World Conference of the International Women’s Year was held in Mexico City. The culminating Report (‘Mexico Report’) reflected several ideas and ideals regarding equality and dignity of women with disabilities that echoed hollowly for thirty years until the inclusion of article 6 in the CPRD. Resolution 13 of the Mexico Report encouraged governments to promote the integration into society of women ‘handicapped’7 and further recommended that special studies be conducted on the situation Reproductive Rights’ in Lee Ann Basser, Melinda Jones, Marcia Rioux (eds), Critical Perspectives on Human Rights and Disability Law (Martinus Nijhoff 2010). 3 Declaration on the Rights of Disabled Persons, UNGA Res 3447(XXX) (9 December 1975). For an overview of various of human rights principles and instruments that speak to disability rights, see Gerard Quinn, Theresia Degener, ‘The Current Use and Future Potential of United Nations Human Rights Instruments in the Context of Disability’ (2002) UN Doc HR/PUB/02/1 (22 October 22 2002). 4 5 Art 6 CRPD. See eg ibid Art 25. 6 The Declaration on the Rights of Disabled Persons ‘confirmed that persons with disabilities have a right to medical treatment, a right to economic and social security and are further entitled to measures designed to enable them to become as self-reliant as possible. The Declaration on the Rights of Disabled Persons further propounded that the needs of persons with disabilities are to be considered at all stages of social and economic planning and that persons with disabilities are to be consulted in all matters related to disability policy.’ See Ena Chadha, Tess Sheldon, ‘Promoting Equality: Economic and Social Rights For Persons With Disabilities Under Section 15’ (2004) 16 NJCL 25. 7 Report of the World Conference of the International Women’s Year, Mexico City UN Doc E/CONF 66/ 34 (2 July 1975) 35–36. In this chapter, we use the phrase ‘disabled women’ and ‘women with disabilities’
mykitiuk and chadha
Article 6
173
of handicapped women about ‘the most appropriate means of protecting them from the risks associated with their condition and on the most effective measures for achieving their reintegration into socially active life’.8 Finally, Resolution 13 urged ‘governments to provide social and rehabilitation services for physically, mentally or economically handicapped women of all ages’.9 Resolution 20 addressed the need of states to provide ‘greater attention to the education, training, work opportunities and integration of handicapped women’ and ‘to undertake public information programmes, by means of all mass communication media, regarding the capacities and limitations of handicapped persons in terms compatible with human dignity’.10 The Mexico Report expressly stated that ‘the needs of handicapped women should receive special attention’.11 In 1979, the United Nations adopted the Convention on the Elimination of all Forms of Discrimination against Women (‘CEDAW’).12 The preamble of the CRPD states that the CRPD is created recalling ‘the Convention on the Elimination of All Forms of Discrimination against Women’.13 While CEDAW enumerated human rights protection for women, including making note of equality in education for girls and sought the eradication of racial discrimination, it remained silent with respect to disability. CEDAW failed to acknowledge the cumulative disadvantage of disability and gender-based discrimination. This is a striking omission given the gender-disability specific resolutions and recommendations expressly communicated in the Mexico Report. The 1980s and 1990s witnessed increasing awareness of the human rights implications of gender and disability disadvantagement. Starting in 1980, the Second World Conference of the United Nations Decade for Women, held in Copenhagen, impressed upon ‘improving the situation of disabled women of all ages’.14 The Copenhagen Report noted that ‘disabled women encounter particular difficulties in developing their individual abilities and skills to the maximum, in becoming self-reliant . . . and participating fully in social life’.15 The Report encouraged states to ‘give special attention to disabled women in order to promote their full participation and integration in all fields of normal life’ and requested explicit consideration of the ‘special needs of disabled women of all ages for medical, social and vocational rehabilitation’.16 The United Nations proclaimed 1981 as the International Year of Disabled Persons and later declared 1983–92 as the United Nations Decade of Disabled Persons.17 In 1982, the United Nations General Assembly passed a resolution entitled the World Programme of Action Concerning Disabled Persons (‘Programme’), promoting global, long-term planning in the areas of disability policy prevention, rehabilitation, and equalization of opportunities.18 The Programme recognized that the consequences of disablement are especially serious for women.19 It highlighted that women with disabilities are
interchangeably. We recognize the importance of people first language and do not intend our use of ‘disabled’ to detract from a people-first philosophy, nor to minimize the diversity of social and cultural perspectives of women with disabilities. For the purposes of this chapter, unless otherwise indicated, our use of the word ‘women’ also includes girls. 11 Mexico Report (n 7). 9 ibid. 10 ibid 96. ibid para 218. 13 CEDAW (n 2). CRPD preamble (d). 14 ‘Report of the World Conference of the United Nations Decade for Women: Equality, Development and Peace, Copenhagen, UN Do A/CONF 94/35 (19 September 1980) 61. 15 16 ibid. ibid 62. 17 UNGA Res 37/52 (3 December 1982), on World Programme of Action concerning Disabled Persons. 18 19 ibid. ibid para 45. 8
12
mykitiuk and chadha
174
Women with Disabilities
subjected to discriminatory conditions obstructing their access to health care, education, employment, and their integration into community life. Although not binding on states, the Programme is noteworthy for spotlighting socio-economic and cultural conditions as exacerbating gender-based disablement.20 The 1975 and 1980 Women’s Conference Reports and the 1982 Programme stand as some of the earliest examples of official United Nations’ recognition of the differentiation of disabled women’s experiences as distinct from the general communities of women and disability. In June 1983, the United Nations adopted the Vocational Rehabilitation and Employment (Disabled Persons) Convention, a landmark instrument setting out the fundamental labour rights of persons with disabilities.21 Article 4 pronounces the right of ‘disabled men and women’ to have equal opportunity and equal treatment with respect to work. The 1985 Third World Conference on Women held in Nairobi again called attention ‘to “especially vulnerable and underprivileged groups of women, such as . . . physically and mentally disabled women” ’.22 The Nairobi Report enumerated several categories of women who, because of ‘their special characteristics’, experience ‘specific difficulties due to their socio-economic and health condition’.23 Recognizing that a combination of factors render these women more vulnerable, the Report observed that the dignity and human rights of women with disabilities remain constrained. The Report also identified that the ‘rights of intellectually disabled women to obtain health information and advice and to consent to or refuse medical treatment should be respected’ as well as those of intellectually disabled minors.24 In 1989, the United Nations adopted the Convention on the Rights of the Child (‘CRC’), which references both equality of the sexes and freedom from discrimination because of disability. Article 2 of the CRC states that the rights contained in the CRC are to be upheld irrespective of the child’s sex or disability and that children should not be discriminated against because of their parents’ identities, including the parents’ gender and/or disability.25 While article 23 of the CRC sets out extensive protections for children with physical or mental disabilities, there is no specific reference to female gender or the unequal treatment experienced by girls with disabilities.26 Read together, CEDAW and the CRC demonstrate how formally ratified human rights conventions that pre-date the CRPD failed to fully recognize the unique situation of disabled women and girls with disabilities. Although CEDAW does not reference disability, in 1991, the Committee on the Elimination of Discrimination against Women (‘Women’s Committee’) issued General Recommendation 18, which included a disquieting observation about the on-going failure
20 Beth Ripet contends that, albeit soft law, the Programme provides a more comprehensive conceptualization of disability as a political, medical, and social phenomenon and affords greater import for emergent disabilities than the CRPD—see Beth Ripet, ‘Emergent Disability and the Limits of Equality: A Critical Reading of the UN Convention on the Rights of Persons with Disabilities’ (2011) 14 Yale Hum Rts & Dev LJ 155. 21 ILO Convention 159: The Convention concerning the Vocational Rehabilitation and Employment of Disabled Persons (69th Conference Session Geneva 1 June 1983) (entered into force 20 June 1985). This Convention was the only legally binding instrument to address women with disabilities prior to the CRPD. 22 Report of the World Conference to Review and Appraise the Achievements of the United Nations Decade for Women: Equality, Development and Peace UN Doc A/CONF 116/28/Rev 1 (26 July 1985) para 41. 23 24 ibid para 27. ibid para 296. 25 Convention on the Rights of the Child (adopted 20 November 1989, opened for signature 20 November 1989, entered into force 2 September 1990) 1577 UNTS 3 art 2; and Mykitiuk and Chadha (n 2). 26 Subsequently, the CRC Committee issued General Comment No 9, on the rights of children with disabilities UN Doc CRC/C/GC/9 (27 February 27 2007) para 17.
mykitiuk and chadha
Article 6
175
of states to address the interests of women with disabilities.27 General Recommendation 18 advocated that states parties’ periodic reports should particularize what measures have been taken to ensure that women with disabilities ‘have equal access to education and employment, health services and social security and to ensure that they can participate in all areas of social and cultural life’.28 However, without formal obligations specified in the treaty, states parties are not required to undertake a gender-disability analysis of their laws and policies. In 1993, the United Nations created the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (‘Rules’).29 At that time, the Rules stood as the most comprehensive statement of principles for advancing the rights of persons with disabilities in relation to eight important target areas.30 The purpose of the Standard Rules is stated as seeking to ensure that disabled children, women, and men are equal members of society and that ‘special attention’ be directed towards them. Although non-binding, several propositions in the Standard Rules addressed commitments that had never previously been formally acknowledged on the international stage and can now be seen reflected in the content of the CRPD. For example, Rule 9 draws attention to ‘negative attitudes towards marriage, sexuality and parenthood of persons with disabilities, especially of girls and women with disabilities, which still prevail in society’.31 Rule 6 expressly identifies the need to ensure equal education services for girls and women with disabilities. Rule 9 encourages the media to serve ‘an important role’ in ‘removing negative attitudes’ about women with disabilities with respect to marriage, sexuality, and parenthood.32 In 1994, as part of its mandate to interpret and advance the International Covenant on Economic, Social and Cultural Rights (‘ICESCR’), the Committee on Economic, Social and Cultural Rights undertook an extensive examination of the social and economic rights of persons with disabilities in General Comment No 5.33 Paragraph 19 of General Comment No 5 pointedly asserted that ‘persons with disabilities are sometimes treated as genderless human beings, and as a result, the double discrimination suffered by women with disabilities is often neglected’.34 The ICESCR Committee strenuously urged states parties to address the situation of women with disabilities ‘with high priority’ in future policy planning.35 Speaking to the issues of reproduction and parenting, General Comment No 5 highlighted that women with disabilities should be protected and supported in relation to ‘motherhood and pregnancy’ and that their sexual ‘needs and desires’ be recognized and respected.36 While not differentiating on the basis of gender, General Comment No 5 also mentioned that ‘children with disabilities are especially vulnerable to exploitation, abuse and neglect’.37 27 General recommendations made by the CEDAW Committee, General Recommendation No 18 UN Doc A/ 46/ 38 (30 May 1991), available at: . Recommendations are suggestions that, in the Committee’s view, elaborate on the obligations assumed by states parties as convention signatories. 28 ibid. 29 UNGA Res 48/ 96 (48th Session) (20 December 1993), Standard Rules on the Equalization of Opportunities for Persons with Disabilities Annex 17. 30 The eight target areas identified in the Standard Rules are: accessibility, education, employment, income maintenance and social security, family life and personal integrity, culture, recreation and sports, and religion. 31 32 Rules (n 29) 18. ibid. 33 CESCR Ctee, General Comment No 5, on persons with disabilities UN Doc E/1995/22 (9 December 1994) para 19. 34 ibid; for a historical overview of General Comment No 5, see Chadha and Sheldon (n 6); see also Mykitiuk and Chadha (n 2). 35 36 37 ibid, General Comment No 5 para 30. ibid. ibid para 31.
mykitiuk and chadha
176
Women with Disabilities
The 1995 Beijing Declaration and Platform for Action adopted at the Fourth World Conference on Women (‘Beijing Declaration’) recognized women and girls with disabilities, along with other personal characteristics, including age and race, as requiring human rights protection.38 The Beijing Declaration called on governments to ‘intensify efforts’ to ensure equal human rights and fundamental freedoms for all women and girls ‘who face multiple barriers’ to their empowerment because of disability.39 The Beijing Declaration focused on the advancement of women with disabilities in areas including education, health, human rights, and economic development and further recognized that ‘the girl child with disabilities faces additional barriers’.40 It also highlighted the particular vulnerability of disabled women and girls and their need for protection in circumstances of violence, war, and armed conflict.41 In December 1997, as a follow-up to the Fourth World Conference on Women and the Beijing Declaration, the United Nations General Assembly adopted resolution 52/100, calling upon states to promote ‘an active and visible policy of mainstreaming a gender perspective at all levels’.42 The concept of ‘gender mainstreaming’ was defined as ‘the process of assessing the implications for women and men of any planned action [ . . . ] so that women and men benefit equally and inequality is not perpetuated.43 The resolution reinforced the United Nations’ commitment to the principles of gender mainstreaming ‘as a strategy for achieving gender equality’.44 While the resolution noted that gender mainstreaming should be an ‘integral’ element of government policies and the strengthening of human rights protections for women, it was silent on the topic of disability and gender. In 1999, the CEDAW Committee issued General Recommendation No 24, addressing concerns regarding women and health. The Recommendation articulated several points in relation to women with disabilities and once again stressed that states should accord ‘special attention . . . to the health needs and rights of women belonging to vulnerable and disadvantaged groups, such as . . . women with physical or mental disabilities’.45 Paragraph 25 stated that states should ensure that health services are respectful of the dignity and human rights of women with disabilities, especially because there is limited understanding ‘of the broad range of risks to mental health to which women are disproportionately susceptible as a result of gender discrimination, violence, poverty, armed conflict, dislocation and other forms of social deprivation.’46 After monitoring the impact of the Standard Rules during his tenure as Special Rapporteur on Disability, Bengt Lindqvist rendered a final report wherein he characterized women as among the ‘most vulnerable’ of groups of people with disabilities.47 38 Report of the Fourth World Conference on Women (Beijing 4–15 September 1995) UN Doc A/CONF 177/20/Rev 1 (17 October 1995). 39 40 41 ibid para 32. ibid para 270. ibid. 42 UNGA Res 52/100 (12 December 1997). 43 44 CESCR, ‘Agreed Conclusions’ UN Doc E/1997/2 (18 July 1997) para (a). ibid. 45 CEDAW Ctee, ‘General Recommendation No 24: Article 12 of the Convention (Women and Health)’ UN Doc A/54/38/Rev 1 (28 July 1999) ch I para 5. 46 ibid para 25. It is noteworthy that a quantitative study by Skarstad and Stein determined that, notwithstanding CEDAW General Recommendations 18 and 24, only 15 per cent of CEDAW Committee’s Concluding Observations referenced disability prior to the CRPD, see Kjersti Skarstad, Michael Ashley Stein, ‘Mainstreaming Disability in the United Nations Treaty Bodies’, (2018) 17 J Hum Rts 1–24. 47 UNCSD ‘Report of the Special Rapporteur of the Commission for Social Development on monitoring the implementation of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities on his third mandate, 2000–2002’ UN Doc E/CN5/2002/4 Annex (9 January 2002): Reaching the most vulnerable; proposed supplement to the Standard Rules on the Equalization of Opportunities for Persons with
mykitiuk and chadha
Article 6
177
Lindqvist observed ‘[w]omen with disabilities are often exposed to double, or even triple, discrimination’48 and recommended that governments and organizations prioritize the protection of girls and women with disabilities. The foregoing chronology of United Nations documents from the 1970s to 2000 reveals that there was growing acknowledgment of women and girls with disabilities as a distinct group with special interests, needs, and vulnerabilities requiring separate attention from issues related solely to disability or gender. Also, evident in the various Recommendations, Rules, and Comments is a heightened awareness of the imbrication of gender and disability in creating complicated discriminatory experiences for women and girls with disabilities. Notwithstanding the various pronouncements, none of the legally binding United Nations instruments were attentive to gender-disability-based discrimination confronted by women and girls with disabilities until the promulgation of the CRPD.49
3. Travaux Préparatoires In December 2001, upon the initiation of Mexico, the United Nations General Assembly adopted Resolution 56/168 establishing an Ad Hoc Committee to study proposals for the creation of a new international, disability-specific convention.50 The Ad Hoc Committee’s mandate was to consider ‘a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities, based on the holistic approach in the work done in the fields of social development, human rights and non-discrimination’.51 Comprised of twenty-seven governmental regional representatives, twelve NGO representatives, and one representative from National Human Rights Institutions,52 this Ad Hoc Committee was one of the first such United Nations’ bodies to formally grant consultative status to NGOs and incorporate contributions from NGOs in developing a new convention.53 The Ad Hoc Committee convened its first round of meetings in July and August 2002. In this opening session, the Ad Hoc Committee received a background paper,
Disabilities, (9 January 2002) paras 56–60; see also Anna Lawson, ‘The United Nations Convention on the Rights of Persons with Disabilities: New Era or False Dawn?’ (2007) 34 Syracuse J Int’l L and Com 563, 582. 48 Division for Social Policy and Development Disability, ‘Special Rapporteur 1994– 2002: Bengt Lindqvist’, available at: . 49 Quinn and Degener (n 3). One exception is the Convention concerning Vocational Rehabilitation and Employment (Disabled Persons) adopted in 1983, wherein Art 4 states ‘Equality of opportunity and treatment for disabled men and women workers shall be respected’. 50 Ad Hoc Committee, UNGA Res 56/168 (19 December 2001). . 51 ibid para 1. The Resolution noted that despite the myriad of UN documents and the works of various governments and agencies seeking to advance the equality of people with disabilities, ‘efforts have not been sufficient to promote full and effective participation by and opportunities for persons with disabilities in economic, social, cultural and political life’. 52 See Enable Timeline, (August 2003), available at: . 53 The Report of the Special Rapporteur recommended that disability NGOs be consulted: Ad Hoc Committee (n 50) para 74. Resolution 56/168 provided for the accreditation and participation of non- governmental organisations in the Ad Hoc Committee. The gender-related advocacy of NGOs played a critical role in the advancement of the rights of women with disabilities in the CRPD.
mykitiuk and chadha
178
Women with Disabilities
entitled ‘Human Rights and Persons with Disabilities’ prepared by the UN Division for Social Policy and Development (‘Social Policy Division’), specifically noting that ‘women with disabilities are discriminated against on two grounds: gender and disability’ and ‘have less access to essential services such as health care, education and vocational rehabilitation’.54 Remarkably, during the Ad Hoc Committee’s first session, Mexico presented an entire working draft convention consisting of over thirty articles with a perambulatory statement about the responsibility of governments to eliminate barriers to the integration of persons with disabilities ‘vulnerable to multiple or aggravated discrimination’.55 Article 4 of Mexico’s proposed draft directed states to ‘adopt specific measures to protect persons with disabilities who are in special situations of vulnerability’; however, the draft did not identify who was captured in this descriptor and did not mention gender as an issue.56 The issue of gender grew in prominence during the second session of the Ad Hoc Committee in June 2003. In response to the Secretary General’s request for input concerning the proposed nature and structure of the new disability convention, the Social Policy Division produced a report summarizing thirty-five submissions by governments, intergovernmental organizations, and UN agencies. This summary highlighted that the submissions placed ‘strong emphasis’ on ‘incorporating a gender perspective’ in the elaboration of the convention and, further, that all replies from UN bodies supported attention be ‘paid to overcoming multiple forms of discrimination’.57 At its second session, the Ad Hoc Committee organized three panels to discuss three ‘priority themes’: i) typology of proposed convention; ii) principles of non-discrimination and equality from a disability perspective; and iii) emerging approaches to definitions of disability.58 The second ‘priority theme’ panel heard from various equality rights experts who advocated that a gender analysis should indeed inform the principles of the convention. The panel provided a written report regarding disability and gender equality.59
54 UNDESA, Division for Social Policy and Development, ‘Human Rights and Persons with Disabilities’ UN Doc A/AC265/CRP 2 (9 February 2001), available at: . 55 Ad Hoc Committee on a Comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities, ‘Working Paper by Mexico’ UN Doc A/AC265/ WP 1 (29 July–9 August 2002), preamble (k), available at: . 56 ibid Art 4. 57 See Note by the Secretary-General on the Ad Hoc Committee, ‘Views submitted by Governments, intergovernmental organizations and United Nations bodies concerning a comprehensive and integral international convention on the protection and promotion of the rights and dignity of persons with disabilities’ UN Doc A/ AC265/2003/4+A/AC265/2003/4/Corr 1 (3 July 2008) para 12 and eg at para 44, where the report noted that the African Union expressed significant concern about African women with disabilities who face ‘extra hardships’, eg in the area of sexuality, where women ‘might be forbidden from getting married or having children simply because they were disabled’. 58 Report of the Ad Hoc Committee UN Doc A/58/118 & Corr 1 (2nd Session) (New York 16–27 June 2003) (17 June 2003), Annex 2 Panel 1: Chairman’s Summary on Panel Discussions on Typology of international conventions and options for a convention on the rights of persons with disabilities. The Ad Hoc Committee’s report reveals that the first panel considered the merits of the following three typological frameworks for the new convention: (1) a broad and comprehensive holistic model expressing principles, interests, and rights like the CRC; (2) a non-discrimination model stating guaranteed rights corresponding with existing treaties akin to the CEDAW; and (3) a hybrid model combining statements of existing rights along with holistic considerations of equality. 59 ibid Annex 2, Panel II: ‘The Principle of Non-Discrimination and Equality from Disability Perspective: Critical Issues concerning Special Measures and Disability’, 17 June: Rangita de Silva de Alwis, ‘Women and Disability’ (17 June 2003), available at: .
mykitiuk and chadha
Article 6
179
Specifically, the report described how women with disabilities ‘fall into multiple categories of race, religion, class, ethnicity, sexual preference and handicapping conditions’ and how lawmaking must reflect the perspectives of these women with disabilities.60 The report pointed out that sexual violence against women with disabilities is often rendered invisible and that cultural norms can exacerbate discrimination. It stated that all laws must be scrutinized for biases, both in failing to consider certain perspectives and for incorporating certain factors that have disparate impact. Moreover, the report of the panel argued that laws should be about empowering, as opposed to protecting, women because ‘[p]aternalistic laws and practices have the power to reinforce the construct of peoples with disabilities as weak and fragile’.61 It emphasized the ‘transformative possibilities of gender analysis’ in understanding disability rights and accommodation.62 Taking place in tandem with the Ad Hoc Committee’s second session were a series of semi-official public forums, called ‘side events’, where state representatives, UN entities, and NGOs met to discuss specific themes related to the formal proceedings. One side event, held on 20 June 2003, dealt with the topic of gender and disability and resulted in the creation of a document entitled ‘Towards a Gender Sensitive Disability Rights Convention’, aimed at convincing the Ad Hoc Committee to explicitly integrate gender into the new convention.63 The document identified core concerns from a gender perspective: equality, right to education and employment, protection against all forms of violence, protection against eugenic health programs/practices, and the right to access health services and family life.64 During its second session, the Ad Hoc Committee assembled a ‘Working Group’ to prepare a draft text of the convention that would serve as the basis for negotiation by the Ad Hoc Committee and member states.65 The Working Group, given only two weeks to undertake this project,66 determined its mandate was to identify possible approaches and provisions of the convention and narrow down the options from a compilation of proposals and submissions in order to provide the Ad Hoc Committee with a framework for further discussion and revisions.67 In December 2003, the Chair of the Ad Hoc Committee, Ambassador Luis Gallegos Chiriboga of Ecuador, delivered to the Working Group a detailed draft convention entitled ‘Chair’s Draft Elements of a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ 61 62 ibid. ibid. ibid. The forum was called ‘Women with Disabilities: Opportunities and challenges for women’s rights activists in the development of a Convention on the human rights of people with disabilities’—see (accessed 2 March 2017). 64 UN Ad Hoc Committee meeting, ‘Towards a Gender Sensitive Disability Rights Convention’ (June 24), available at: (accessed 27 February 2017). The document discussed how disabled women and girls experience multiple forms of discrimination, including restricted access to education, inequality in employment, subjection to physical violence, sexual assault, and sterilization and neglect in health and family planning programs. 65 Report of the Working Group to the Ad Hoc Committee, on a ‘Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2004/WG/1 (27 January 2004). 66 ibid; Don MacKay, Ambassador of New Zealand, was named the Co-ordinator of the Working Group. Chairman of the AH Committee. The Working Group met from 5–14 January 2004 and held twenty formal meetings and number of informal consultations. 67 Report of the Working Group to the Ad Hoc Committee, on a ‘Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2004/WG/1 (27 January 2004) para 9. 60 63
mykitiuk and chadha
180
Women with Disabilities
(‘Chair’s Draft’).68 The Chair’s draft included a specific clause (‘article 7’) with respect to ‘equality of women and men with disabilities in the enjoyment of rights’.69 The Co- ordinator of the Working Group suggested using the Chair’s draft as a guide for discussions with the underlying assumption that all the texts in the proposed draft have ‘equal status’.70 By the end of its two weeks, the Working Group compiled the submissions and proposals obtained through its consultations and, by consensus, produced a report for the Ad Hoc Committee setting out its draft of the proposed text for the new disability convention.71 The draft text was presented at the third session of the Ad Hoc Committee in May–June 2004. While this first draft convention contained a provision recognizing equality and prohibiting discrimination based on a wide array of personal characteristics and other grounds (including race, sex, religion, political, property, source or type of disability, age), the Working Group’s draft text failed to address the unique aspect of gender-disability disadvantagement.72 As previously noted, the Chair’s draft article 7 incorporated an explicit recognition of the equality of women and men with disabilities.73 This proposed article stated: States parties recognize that women and girls with disabilities are subject to multiple discrimination and that focused, gender-specific measures (including protective measures) will be necessary to ensure that women and girls enjoy all human rights and fundamental freedoms on the basis of equality with men and boys.74
As such, at the outset of its work, the Working Group had received for its consideration from the Chair of the Ad Hoc Committee a specific gender-related provision that emphasized the multiple discrimination experienced by women with disabilities and the need for gender responsive measures. The Working Group’s records further indicate that New Zealand and India also endorsed that the draft convention include specific reference to the fact that women with disabilities experience ‘double disadvantage’ or ‘multiple discrimination’.75 In addition, the Working Group had before it draft language based on an expert conference held in 68 SCRPD, Ad Hoc Committee on an International Convention, (4th session, 23 August–3 September 2004) ‘Chair’s Draft Elements of a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (December 2003), available at: (accessed 18 May 2016). 69 ibid Art 7. 70 Working Group Daily Summary 5 January 2004, available at: . 71 Report of the Working Group to the Ad Hoc Committee, on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities UN Doc A/AC265/2004/WG/1 (27 January 2004) Annex I: Draft Articles , available at: . 72 ibid Art 7. The text of the Working Group’s Art 7 stipulated that: ‘States parties recognize that all persons are equal before the law and are entitled without any discrimination to the equal protection of the law. States parties shall prohibit any discrimination on the basis of disability, and guarantee to all persons with disabilities equal and effective protection against discrimination. States parties shall also prohibit any discrimination and guarantee to all persons with disabilities equal and effective protection against discrimination on any ground such as race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth, source or type of disability, age, or any other status.’ 73 74 Chair’s Draft (n 68) Art 7. ibid. 75 Working Group of the Ad hoc Committee on an International Convention, Compilations of Proposals for Elements of a Convention: Part V—Guarantee of Equality and Non-discrimination (5 January 2004), available at: .
mykitiuk and chadha
Article 6
181
Bangkok during October 2003.76 The Bangkok expert group favoured that the new convention recognize multiple discrimination faced by women and children with disabilities and further supported that the convention acknowledge that discriminatory treatment can occur on the basis of intersectionality under multiple grounds, such as, women with disabilities.77 Notwithstanding these explicit proposals speaking to gender-disability disadvantage, one representative of the Working Group involved in the first draft of the convention text described the absence of gender in the Working Group’s proposals to the Ad Hoc Committee as an oversight caused by the tight timeline.78 Based on the draft text of the convention prepared by the Working Group, the Ad Hoc Committee began negotiations and discussions of the specific structure, language, and provisions of the convention in its third session (May–June 2004). At this juncture, the Republic of Korea (‘South Korea’) proposed a draft article on women with disabilities (‘article 15bis’). South Korea’s article 15bis was even more detailed than the Chair’s draft article 7 in its focus on proactive responsibilities of states to promote equality for women with disabilities.79 South Korea’s article 15bis articulated the obligation that governments adopt a ‘gender perspective’ in their legislation and policies.80 It also delineated that states incorporate women with disabilities in social surveys and collect gender-disaggregated data; develop and disseminate policies to assist the special needs of women with disabilities regarding pregnancy, post-partum health, and child care; protect employment rights of pregnant women or mothers with disabilities; and ensure that women with disabilities are protected from sexual exploitation and abuse.81 During the fourth, fifth, and sixth sessions of the Ad Hoc Committee (from August 2004 to August 2005), member states discussed the proposed clauses of the CRPD, including South Korea’s proposed article 15bis. Comments on article 15bis highlighted a debate between those in favour of a separate clause on gender, no specific provision and those in favour of mainstreaming gender into the substantive provisions of the CRPD.82 Don MacKay, now the new Chair of the Ad Hoc Committee, circulated a report during the sixth Session which noted that there was ‘general agreement’ to include gender equality into the Convention; however, there were a variety of views expressed on how best to address gender issues.83 Some delegations supported the proposal for a stand-alone 76 Ad Hoc Committee, Bangkok Recommendations on the elaboration of a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities, UN Doc A/ AC265/2003/CRP/10 (2–4 June 2003) , available at: . The report described the participants as ‘experts from governmental and non-governmental organizations, national disability and human rights institutions and independent experts’. 77 ibid paras 13 and 20. 78 Sigrid Arnade, Sabine Haefner, ‘Standard Interpretation of the UN Convention on the Rights of Persons with Disabilities (CRPD) from a Female Perspective: Position and Reference Paper on the Significance of References to Women and Gender in the Convention on the Rights of Persons with Disabilities’ (2011) Netzwerk Artikel 3, 15. 79 SCRPD, Ad Hoc Committee Report of the Third Session on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities UN Doc A/AC.265/2004/5 (9 June 2004), available at: . 80 81 ibid Art 15bis 2(a). ibid. 82 For a summary of the discussions of states and NGOs about the proposed Art 15 bis, see Ad Hoc Committee’s sixth session on Art 6: Women with Disabilities, ‘Comments, proposals and amendments’ (1–4 August 2005), available at: . 83 Letter dated 7 October 2005 from the Chairman to all members of the Committee, A/AC265/2006/1 (14 October 2005), available at: .
mykitiuk and chadha
182
Women with Disabilities
article, others were of the view that a reference in the preamble combined with language in the general principles, the general obligations, or the monitoring section best met the aim. Some delegations proposed to mainstream gender issues throughout thematic articles of specific relevance to women, while others supported both a separate article in addition to mainstreamed references.84 For example, Canada supported gender mainstreaming throughout the convention.85 In contrast, Kenya and Israel supported the standalone article approach.86 In further contrast, the European Union and Australia suggested including a reference to the vulnerability of women with disabilities to multiple forms of discrimination in the preamble of the CRPD on the basis that such a statement would help the interpretation of other articles.87 The competing views highlighted the tension between using interpretative provisions, which can be read expansively but are symbolic and not legally binding, versus entrenching specific substantive obligations into the body of the convention, which risked narrowing the rights of women and girls to only those particularly worded concerns.88 As a result during the sixth session, Don MacKay, appointed Theresia Degener, a legal expert and member of the German delegation, to serve as a facilitator of a small group to ‘examine where and if there were gaps in the convention that needed to be addressed from a gender perspective’.89 At the opening of the seventh session, the Chair of the Ad Hoc Committee noted that ‘[t]here was clearly agreement that disabled women are at a particular disadvantage and vulnerability and that their situation needs to be appropriately covered by the draft Convention’.90 He observed that the division between member states on how to best approach the issue of women with disabilities seemed to be of one of placement rather than substance and, consequently, directed the facilitator to continue to work on the issue of women with disabilities. On 31 January 2006, Degener’s proposal as facilitator was put before the seventh session of the Ad Hoc Committee.91 Degener proposed that a clause could be added to article 4, which iterated the ‘general obligations’ section of the convention, or that a
84 Ad Hoc Committee, Sixth session on Article 6: Women with Disabilities, ‘Report by the Chairman’ (4 August 2005) para 24, available at: . 85 SCRPD, Article 6 Comments, Proposals and Amendments Submitted Electronically, 6th Session (1–12 August 2005), available at: ; CRPD Ad Hoc Committee, ‘Daily summary of discussion at the sixth session’ (2 August 2005), available at: . 86 87 ibid. ibid. 88 See General Discussion On Women And Girls With Disabilities (September 2014) 80, available at: ; see also Valentina Della Fina, Article 6 (Women with Disabilities) in Valentina Della Fina et al (eds), The United Nations Convention on the Rights of Persons with Disabilities (Springer 2017) 175–94. 89 Report by the Chairman, Draft article 15bis—Women with Disabilities (Sixth Session) para 26: small groups were employed to address the lack of consensus regarding certain provisions by consulting with delegates and proposing amended language, available at: . 90 SCRPD, Letter Dated 7 October 2005 from the Chairman to all Members of the Committee, (7th Session New York 16–27 January 2006) UN Doc A/AC265/2006/1 (14 October 2005) para 40, available at: . 91 Ad Hoc Committee on the Convention on the Rights of People with Disabilities, ‘Daily summary of discussion at the seventh session’ (31 January 2006), available at: .
mykitiuk and chadha
Article 6
183
separate provision could be inserted as article 6 setting out the following with respect to gender: 1. State parties recognise that women and girls with disabilities are subject to multiple discrimination and that focused, empowerment and gender sensitive measures are necessary to ensure the full and equal enjoyment by women and girls with disabilities of all human rights and fundamental freedoms. 2. State parties shall take all appropriate measures to ensure the equal rights of women with disabilities to the enjoyment of all rights set out in this Convention.92 Additionally, based on her consultations, Degener proposed several points be featured in other parts of the convention with respect to gender. She suggested that the preamble include a statement recognizing that disabled women and girls are at a greater risk of violence, abuse and neglect and that article 16 reflect state responsibility to take all appropriate measures to protect against such exploitation of disabled people, in particular girls and women with disabilities.93 Further, she recommended that article 23, pertaining to respect for home and the family, stipulate equality with respect to gender and disability.94 Lastly, she proposed that article 25 regarding health specify the obligation that states develop and disseminate family-planning and pregnancy policies ‘that are inclusive of women with disabilities and protect them against any form of coercive treatment, including sterilization’.95 The Chair submitted the revised article (‘draft article 6’) as prepared by Degener for consideration to the Ad Hoc Committee. Although shorter than article 15bis, draft article 6 also emphasized gender responsive measures and the goal of women’s advancement.96 Member states were invited to comment on the content of draft article 6 and the key issues continued to be whether a gender-related provision should exist as a separate article or be captured within the ‘general obligations’ section of the convention. Comments on draft article 6 appeared to suggest that member states now preferred the stand-alone article approach over the gender mainstreaming approach. However, some NGOs, such as the International Disability Caucus, strongly supported a ‘twin track approach’, which entailed both a stand-alone article and gender-specific language incorporated in the substantive articles of the CRPD.97 Eventually, certain countries, such as Canada and Israel, also expressed support for a distinct article, as well as mainstreaming gender into the various thematic areas of the convention. The twin track approach was adopted by the Ad Hoc Committee at the eighth session and enshrined it in its final version of the CRPD. This approach guaranteed that states 92 Ad Hoc Committee’s Seventh Session on Article 6: Women with Disabilities, Proposals Made by Facilitators, pt 1: Women, available at: . 93 94 95 ibid. ibid. ibid. 96 Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its Seventh Session UN Doc A/AC265/2006/2 (13 February 2006) para 9, available at: . 97 SCRPD, Ad Hoc Committee seventh session, Article 6 Comments, Proposals and Amendments Submitted Electronically (16 January– 3 February 2006), available at: (accessed 18 May 2016); International Disability Caucus. ‘The Convention and Women with Disabilities: We Need the Twin Track Approach!!’ UN enable 14 August 2006, Internet ; see also Rosemary Kayess, Phillip French, ‘Out of Darkness into Light? Introducing the Convention on the Rights of Persons with Disabilities’ (24 January 2008) 8 HRLR 1, 31; and Peter Blanck, Meera Adya, and Maria Veronica Reina, ‘Defying Double Discrimination’ (2007) 8 Geo J Int’l Aff 95.
mykitiuk and chadha
184
Women with Disabilities
preferring a stand-alone article and those in favour of gender mainstreaming each had their preferences represented in the convention. Article 6 exists as a stand-alone provision on women and girls with disabilities in the CRPD. The final version of article 6 represents significant advancement towards a more nuanced articulation of the multifaceted nature of the disadvantages confronted by women and girls with disabilities. Article 6 also stands as a clear statement of the duty of states to safeguard and promote gender equality.
4. Paragraph 1: Multiple Discrimination Paragraph 1 of article 6 begins with the obligation that states parties recognize ‘multiple discrimination’ is an obstacle to the full enjoyment of the rights and freedoms of women and girls with disabilities. The inclusion of the phrase ‘multiple discrimination’ in the opening language of article 6 advances the reality that women and girls with disabilities routinely experience discrimination because of a combination of overlapping, immutable, and systemic factors and that states must take measures to ensure the equal enjoyment and benefit of human rights by all women and girls with disabilities.98 Relying on the concepts of ‘intersectionality and multiple discrimination’, feminist scholars in the 1990s re-conceptualized women’s identities to capture their lived realities of multifaceted sources of oppression.99 An intersectional approach shifts the focus from the single identity category or formal ground of discrimination attached to a woman and, instead, investigates the impact of the discrimination, locating discrimination in the intersection of one’s identity and experience of disability, gender, race, and other relevant characteristics. By examining the effect of the discriminatory treatment, as opposed to fixating only on one marker of the discrimination, a ‘multiple discrimination’ analysis seeks to reflect how disadvantagement is experienced in the lives of women with disabilities. This approach is consistent with the social model of disability because it does not locate the problem as inherent to the individual’s characteristic, but rather spotlights the disadvantage that occurs because of how society is constructed and treats the individual. In late 2016, the CRPD Committee issued General Comment No 3, a detailed report clarifying the scope and nature of the rights and responsibilities in the Convention regarding women with disabilities.100 There, the CRPD Committee confirmed that article 98 Ad Hoc Committee on the Convention on the Rights of People with Disabilities, ‘Daily summary of discussion at the sixth session’ (2 August 2005), available at: . During the meeting the Chair acknowledged that ‘the situation faced by disabled women is more than just the combined disadvantage of disability and gender’. 99 Kimberle Crenshaw ‘Mapping the Margins: Intersectionality, Identity Politics, and Violence against Women’ (1991) 43 Stan L Rev 1241; Nitya Duclos, ‘Disappearing Women: Racial Minority Women in Human Rights Cases’ (1993) 6 CJWL 25; equally, Carol A Aylward, ‘Intersectionality: Crossing the Theoretical and Praxis Divide’ (2010) 1 JCRI 1. The Ontario Human Rights Commission was one of the first state entities to formally acknowledge the concept of intersectionality. The Discussion Paper by OHRC Policy and Education Branch, ‘An Intersectional Approach to Discrimination: Addressing Multiple Grounds in Human Rights Claims’ (Toronto: Queens Printer 2001) 3—available at: —states that ‘[a]n intersectional approach takes into account the historical, social and political context and recognizes the unique experience of the individual based on the intersection of all relevant grounds’. 100 CRPD Committee, ‘General Comment No 3, on Article 6: Women and Girls with Disabilities’ UN Doc CRPD/C/GC/3 (25 November 2016). At the time of issuance, General Comment No 3 was the lengthiest comment consisting of seventeen pages and sixty-five paragraphs.
mykitiuk and chadha
Article 6
185
6’s reference to ‘multiple discrimination’ embodies two distinct dynamics that underlie an intersectional analysis.101 First, multiple discrimination interrogates the notion of single identity or ground of discrimination on the basis that women with disabilities are a collection of various qualities, as well as perceived characteristics. ‘Multiple discrimination’ recognizes that adverse treatment occurs because of discrete, yet interconnected, personal and perceived characteristics, such as race, disability, and gender.102 General Comment No 3 explains that intersectionality ‘refers to a situation where several grounds operate and interact with each other at the same time in such a way that they are inseparable’.103 Second, multiple discrimination discerns the unique, often disproportionate disadvantagement that intensifies the subjugation of people with layered identities.104 General Comment No 3 states that the concept of intersectional discrimination acknowledges the ‘experiences of heightened disadvantage of individuals caused by multiple and intersecting forms of discrimination’.105 Although the CRPD does not include the language of intersectionality, General Comment No 3 makes several references to the concept and emphasizes intersecting discrimination as a priority area of concern for states in ameliorating the disadvantaged status of women with disabilities. Article 6 is the first provision in an international treaty to incorporate a model of differential treatment that emphasizes ‘multiple discrimination’.106 This formal recognition of multiple discrimination correlates with the CRPD’s guiding principle of respecting the diversity of the disability community and acknowledgement of aggravated experiences of discrimination.107 Although paragraph 1 does not assign which personal characteristics correspond to the notion of ‘multiple discrimination’, the CRDP’s preamble lists numerous protected categories, including race, language, religion, age, etc, and article 5 protects against discrimination on all these grounds.108 Therefore, pursuant to article 5, states parties should address multiple discrimination against women and girls with disabilities on the enumerated grounds in order to achieve formal and substantive equality.109 By locating the phenomenon of multiple discrimination upfront in paragraph 1, article 6 requires states to apprehend the complex nature of discrimination incurred by
101 Ibid paras 4 and 13; paragraph 4(c) notes that the ‘[g]rounds for discrimination include, but are not limited to: age, disability, ethnic, indigenous, national or social origin, gender identity, political or other opinion, race, refugee, migrant, or asylum status, religion, sex, or sexual orientation’. 102 eg when a low income, single mother of colour with a mental health disability is denied housing, it is important to understand the refusal to rent is likely to be a case of ‘multiple discrimination’ due to the combination of ethnicity, disability, family status, and poverty, as opposed to simply because of the woman’s gender or disability. The second conceptualization of ‘multiple discrimination’ is the reality that a single mother of colour with a mental health disability is disproportionately vulnerable to aggravated unfairness and prejudice which is significantly dissimilar to that experienced by a non-disabled or non-racialized, married man. 103 General Comment No 3 (n 100) para 4. 104 See eg Adrienne Asch, ‘Critical Race Theory, Feminism, and Disability: Reflections on Social Justice and Personal Identity’ (2001) 62 Ohio State Law Journal 391. 105 General Comment No 3 (n 100) para 16. 106 Marianne Schulze, Understanding the UN Convention on the Rights of Persons with Disabilities, (August 2010), available at: . 107 Art 3 (p) and (m) CRPD, lists the CRPD’s general principles. 108 ibid Preamble (p) lists race, colour, sex, language, religion, political or other opinion, national, ethnic, indigenous or social origin, property, birth, age, or other status. It is noteworthy that, although the CRPD does not specify sexual orientation or gender identity as protected characteristics, General Comment No 3, (n 100) para 5, details ‘lesbian, bi-sexual, transgender women, and intersex persons’ among the diverse groups of women with disabilities that require protection under the Convention. 109 Art 5 CRPD.
mykitiuk and chadha
186
Women with Disabilities
disabled women and girls.110 The wording of paragraph 1 also requires states to undertake necessary actions to ensure that all members of the diverse community of women and girls with disabilities are equally protected and able to benefit from their full range of human rights and fundamental freedoms.111 To this end, the CRPD Committee has recommended that states parties ‘adopt effective and specific measures to prevent intersectional forms of discrimination against women and girls with disabilities’;112 ‘take specific measures to tackle multiple and intersectional discrimination against women with disabilities’113 and employ a ‘twin-track approach which also includes levelling and affirmative action measures to eliminate multiple and intersectional discrimination from all areas of life, both in urban and in rural areas’.114
5. Paragraph 2: Development, Advancement and Empowerment Paragraph 2 of article 6 requires that states parties take ‘all appropriate measures’ to ensure the ‘development’, ‘advancement’ and ‘empowerment’, of women and girls with disabilities so that they can exercise their human rights and fundamental freedoms as articulated in the CRPD. The provision recalls the ideals put forward by Degener that governments engage in ‘focused, empowerment and gender sensitive measures’115 and reflects the call of South Korea for ‘action-oriented language’ to address the invisibility of women with disabilities in ‘existing global norms’.116 Paragraph 2 affirms that states parties are under a positive duty to marshall the means necessary to facilitate the realization of the rights and freedoms guaranteed in the CRPD. General Comment No 3 puts to rest any doubt over the affirmative nature of the CRPD’s obligations by unequivocally stating that the ‘appropriate measures’ declared in paragraph 2 ‘. . . may be temporary or long-lasting and should overcome de jure and de facto inequality’ of women with disabilities.117 Such measures can take different forms: educational, legislative, administrative, or political, for example.118 Thus, under the purview of article 6, in its Concluding Observations the CRPD Committee has recommended that the United Arab Emirates conduct ‘awareness-raising and education programmes . . . to foster respect for the rights and dignity’ and ‘combat stereotypes, prejudices and misconception’ of women and girls with disabilities;119 recommended that Guatemala ‘bring its 110 General Comment No 3, (n 100) para 18, indicates that ‘states parties must adopt legal provisions and procedures that explicitly recognize multiple discrimination to ensure complaints made on the basis of more than one ground of discrimination are considered in determining both liability and remedies’. 111 ibid para 17(e). The Committee endorsed the notion that systemic discrimination is as harmful as direct discrimination and must be remedied by states. 112 CRPD Committee, ‘Concluding Observations on the initial report of Sweden’ UN Doc CRPD/C/ SWE/CO/1 (12 May 2014) para 14. 113 CRPD Committee, ‘Concluding Observations on the initial report of Uganda’ UN Doc CRPD/C/ UGA/CO/1 (12 May 2016) para 12(b). 114 CRPD Committee, ‘Concluding Observations on the initial report of Portugal’ UN Doc CRPD/C/ PRT/CO/1 (20 May 2016) para 18: this is not a direct quote. 115 Joint Facilitators’ proposal of the Ad Hoc Commission, on Women and Children, pt 1: Women (7th session) (28 January 2006), available at: . 116 Ad Hoc Committee—Daily Summaries, (August 2 2005), available at: . 117 118 General Comment No 3 (n 100) para 20. ibid para 24. 119 CRPD Committee, ‘Concluding Observations on the initial Report of the United Arab Emirates’ UN Doc CRPD/C/ARE/CO/1 (3 October 2016) para 14(b).
mykitiuk and chadha
Article 6
187
legislation on sexual and reproductive rights into line with the Convention and ensure that those rights are not limited or restricted for women and girls with disabilities’120 and even more strongly directed Brazil to ‘take immediate action to adopt a due diligence framework to ensure that its laws, policies and programmes that target violence against women, including institutionalized women, are accessible and effective in preventing and redressing violence’.121 General Comment No 3 further notes that while ‘temporary special measures such as quotas’ may be necessary to overcome systemic discrimination, long-term, proactive measures, such as legislative reform, are ‘essential prerequisites for achieving substantive equality for women with disabilities’.122 Paragraph 2 breaks new ground in being the first, legally binding treaty provision to embody positive human rights obligations with respect to women with disabilities. Paragraph 2 confirms that article 6 is more than just an anti-discrimination clause. By providing that states must take all ‘appropriate measures’ to bring about the ‘full development, advancement and empowerment of women’, paragraph 2 enacts affirmative governmental responsibility to foster the civil, political, social, and economic interests of women and girls with disabilities. Indeed, in order to promote the development, advancement, and empowerment of women with disabilities, the CRPD Committee has recommended that Uganda ‘ensure that gender as well as disability policy address the situation of women with disabilities and allocate appropriate human, technical and budgetary resources’123 to these ends. While ‘development’ and ‘advancement’ are concepts often related specifically to economic growth and the eradication of poverty, General Comment No 3 makes it clear that state responsibilities under article 6 are not limited to those areas. Gender and disability- specific initiatives will be required in the realms of employment, education, and violence against women and girls to ensure their full economic empowerment; however, General Comment No 3 provides that measures are also required in the areas of health, participation in sports, culture, and politics.124 Moreover, as the CRPD Committee has recommended in a number of Concluding Observations125 and as stated in General Comment No 3 ‘ensuring the empowerment of women with disabilities means promoting their participation in public decision-making’126 and promoting ‘the participation of representative organizations of women with disabilities, not just disability-specific consultative bodies’.127 Paragraph 2 serves as concrete recognition that in order for women with disabilities to meaningfully exercise and enjoy their rights and freedoms, states need to create
120 CRPD Committee, ‘Concluding Observations on the initial Report of Guatemala’ UN Doc UN Doc CRPD/C/GTM/CO/1 (30 September 2016) para 22. 121 CRPD Committee, ‘Concluding observations on the initial report of Brazil’ UN Doc CRPD/C/BRA/ CO/1 (29 September 2015) para 15. 122 General Comment No 3 (n 100) para 20. 123 Concluding Observations on Uganda (n 113) para 11(c). 124 General Comment No 3 (n 100) para 21. 125 See eg CRPD Committee, ‘Concluding Observations on the initial Report of Thailand’ UN Doc CRPD/C/THA/CO/1 (12 May 2016) para 16(d); CRPD Committee, ‘Concluding Observations on the initial Report of Serbia’ UN Doc CRPD/C/SRB/CO/1 (23 May 2016) para 12(c); CRPD Committee, ‘Concluding Observations on the initial Report of New Zealand’ UN Doc CRPD/C/NZL/CO/1 (31 October 2014) para 16. 126 127 General Comment No 3 (n 100) para 23. ibid.
mykitiuk and chadha
188
Women with Disabilities
gender-specific measures that are targeted at promoting disabled women’s development and empowerment. Cumulatively, paragraphs 1 and 2 of article 6 propound a social and human rights model of disability by mandating that states take action to ensure that disabled women overcome multiple barriers that exist not only because of personal traits, but simultaneously due to systemic alienation.128 Paragraph 2 picks up from the directive in paragraph 1 requiring states to devise ‘measures’ in regards to ‘multiple discrimination’ and further expounds state responsibility to fully develop and advance the rights and freedoms of women with disabilities.129 Paragraphs 1 and 2 make clear that the diversity of women with disabilities must be respected130 and that conditions which limit their participation in society must be addressed.131 Read together, these paragraphs make it incumbent on states to adopt gender-sensitive initiatives to overcome disadvantage, encourage human rights progress, and promote the inherent dignity of women and girls with disabilities.
5.1 ‘exercise and enjoyment of the human rights and fundamental freedoms set out in the present Convention’ Effectively, this final part of paragraph 2 links article 6 with other provisions in the CRPD. We shall examine these linkages in the following subsections. The CRPD introduces a new paradigm for international human rights treaties by dedicating a distinct article to women with disabilities, while also mainstreaming gender throughout the Convention and affirming an intersectional, human rights perspective. In addition to article 6, gender equality is a founding principle of the CRPD (preamble and article 3), gender is specifically referenced in several thematic articles (articles 8, 16, 25, and 28) and mandatory gender parity is established for the configuration of the CRPD Committee (article 31). Notwithstanding the cross-cutting nature of article 6, certain articles of the CRPD are striking for their omission of disabled women and girls. These include: article 11 (humanitarian emergencies), article 15 (torture), article 23 (family), article 24 (education), article 27 (employment), and article 31 (data collection). We will briefly examine the text of each of these articles in seeking a better understanding of the CRPD’s protections and limitations in relation to the rights of women with disabilities.
128 Peter Blanck, Meera Adya, and Maria Veronica Reina (n 97), describe how women with disabilities are alienated at social and legal levels. 129 eg the Committee recommends that Brazil ‘implement a strategy to promote each of the three elements contained in Art 6(2) of the Convention’, Concluding Observations on Brazil (n 121) para 17. 130 To this end, the Committee calls upon Germany to ‘implement programmes for women and girls with disabilities,’ particularly migrants and refugees, ‘to eliminate discrimination in all areas of life’. CRPD Committee, ‘Concluding Observations on the initial Report of Germany’ UN Doc CRPD/C/DEU/CO/1 (13 May 2015) para 16(a); see also CRPD Committee, ‘Concluding Observations on the initial Report of Kenya’ UN Doc CRPD/C/KEN/CO/1 (30 September 2015) para 12 (a). 131 The Committee recommends the establishment of a ‘formal consultation mechanism to ensure that women and girls with disabilities’ and their ‘representative organizations, are meaningfully consulted’ and ‘enabled to participate in the legislative and political spheres’, CRPD Committee, ‘Concluding Observations on the initial Report of the Cook Islands’ UN Doc CRPD/C/COK/CO/1 (15 May 2015) para 12 (a); see also: CRPD Committee, ‘Concluding Observations on the initial Report of Argentina’ UN Doc CRPD/C/ ARG/CO/1 (8 October 2012) para 14; CRPD Committee, ‘Concluding Observations on the initial Report of Costa Rica’ UN Doc CRPD/C/CRI/CO/1 (12 May 2014) para 14; CRPD Committee, ‘Concluding Observations on the initial Report of Qatar’ UN Doc CRPD/C/QAT/CO/1 (2 October 2015) para 14.
mykitiuk and chadha
Article 6
189
5.2 Interpretative Guidance The entry point into the CRPD’s adoption of human rights principles is the preamble, which situates the legislative and social context of the Convention.132 Four paragraphs of the CRPD’s preamble address gender-related issues with respect to women and girls with disabilities.133 Sub-paragraph (d) acknowledges the rights contained in the CEDAW and CRC are the backdrop to the CRPD. Sub-paragraph (p) highlights ‘the difficult conditions faced by persons with disabilities who are subject to multiple or aggravated forms of discrimination on the basis of . . . sex’.134 More explicitly, sub-paragraph (q) of the preamble states ‘that women and girls with disabilities are often at greater risk, both within and outside the home, of violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation’.135 This provision is important for its identification of the different manifestations of violence that women with disabilities routinely experience and for its recognition that the abuse is perpetrated both in women’s own residences and the community at large. Lastly, the CRPD unequivocally espouses the importance of gender-mainstreaming in sub-paragraph(s) by ‘[e]mphasizing the need to incorporate a gender perspective in all efforts to promote the full enjoyment of human rights and fundamental freedoms by persons with disabilities’.136 In addition to the preamble, article 3 enumerates the general principles of the CRPD for the purposes of guiding its interpretation. In expressing the core values of the CRPD, article 3 endorses ‘equality between men and women’, along with respect for inherent dignity, the diversity of disability and the rights of children with disabilities.137 It also affirms the principles of non-discrimination, inclusion in society, equal opportunity, and accessibility. Since the preamble and article 3 constitute the interpretive provisions of the CRPD, there can be little doubt that gender equality and freedom from the multifaceted nature of gender-disability discrimination are central tenets of the Convention and, further, that the import and meanings of all other articles must be construed in accordance with these overarching principles. This is once more evident in article 8, entitled ‘Awareness-raising’, which entrenches a duty on states to implement effective measures to combat gender ‘stereotypes, prejudices and harmful practices . . . in all areas of life’.138
5.2.1 Article 16—Violence Article 16 elaborates on the rights of people with disabilities to be free from exploitation, violence, and abuse and reiterates the theme raised in the preamble about special attention to female victimization.139 Substantial passages of article 16 outline the responsibility of states to undertake ‘all appropriate legislative, administrative, social, educational and 132 In accordance with Art 31 of the Vienna Convention on the Law of Treaties (VCLT), the text and preamble of a treaty are used for interpretation. 133 134 135 The preamble has twenty-five paragraphs. CRPD preamble (p). ibid para (q). 136 137 ibid para (s). Art 3 CRPD. 138 Art 8 CRPD. The Committee recommends that states parties combat or overcome entrenched disability and gender stereotypes in the Concluding Observations of a number of countries—see CRPD Committee, ‘Concluding Observations on the initial Report of Slovakia’ UN Doc CRPD/ C/ SVK/ CO/ 1 (18 April 2016) para 28; Concluding Observations on Uganda (n 112) para 16(a); CRPD Committee, ‘Concluding Observations on the initial Report of Gabon’ UN Doc CRPD/C/GAB/CO/1 (2 October 2015) para 21. 139 Art 16 CRPD; see also the UNGA Declaration on the Elimination of Violence Against Women, UNGA Res Doc 48/104 (20 December 1993) preamble, which states that ‘violence against women is one of the crucial social mechanisms by which women are forced into a subordinate position compared with men’.
mykitiuk and chadha
190
Women with Disabilities
other measures’ to protect against all forms of exploitation and abuse of people with disabilities in private and public spheres, including addressing the ‘gender-based aspects’ of the violence.140 It further directs that government initiatives for prevention, recovery, and reintegration must be comprised of appropriate ‘gender-and age-sensitive assistance and support’ taking into account ‘gender-and age-specific needs’.141 The provision concludes: States Parties shall put in place effective legislation and policies, including women-and child- focused legislation and policies, to ensure that instances of exploitation, violence and abuse against persons with disabilities are identified, investigated and, where appropriate, prosecuted.
Article 16 reflects a commitment to a contemporary understanding of how gender and disability converge to create heightened vulnerability of women with disabilities to abuse and violence.142 As documented in General Comment No 3, women with disabilities experience violence and abuse as a consequence of ‘physical force, economic coercion, trafficking and deception; misinformation; abandonment; the absence of free and informed consent . . . neglect . . . bullying, verbal abuse . . . psychological manipulation’.143 Women with disabilities frequently experience violence in situations of dependence on perpetrators, such as ‘interpersonal violence’ at the hands of partners or personal care workers in the home or various service providers in a public setting.144 General Comment No 3 elucidates that article 16 incorporates distinct disability-related forms of abuse (eg the removal of communication aids or the harming of assistance dogs) and abuse that is gender-specific (eg refusal by caregivers to assist with menstruation management or forced abortions).145 Article 16 reinforces the serious obligation on states to take proactive legal, social, and educational measures to prevent and protect against gender-based violence,146 as well as the necessity to provide gender and age appropriate pyscho-social support to victims. Finally, although article 13 stands as the ‘access to justice’ provision of the CRPD, it is noteworthy that the concluding paragraph of article 16 also targets the same by urging states to ‘prosecute’ exploitation, violence and abuse of women and girls with disabilities.147 141 Art 16(1) CRPD. ibid Art 16(2). A Canadian multivariate research study found that ‘patriarchal dominance and sexually proprietary behaviors were strongly linked’ to elevated risks of severe partner violence against women with disabilities: Douglas A Brownridge, ‘Partner Violence against Women with Disabilities: Prevalence, Risks and Explanations’ (2006) 12 Violence against Women 805, 818. According to Dena Hassouneh-Phillips and Mary Ann Curry, ‘Abuse of Women with Disabilities: State of the Science’ (2002) 45 RCB 96, 96, women with disabilities experience higher rates of violence compared to the general population. They ‘experience disability-specific forms of abuse for prolonged periods of time and from multiple perpetrators’. 143 General Comment No 3 (n 100) para 31. 144 ibid para 29; see also Laurie E Powers, Rosemary B Hughes, Emily M Lund, ‘Interpersonal Violence and Women with Disabilities: A Research Update’ (2009) VAWnet Applied Research Forum, available at: 2. These authors use the phrase ‘interpersonal violence’ to denote the scope of the problem extends beyond domestic violence and includes violence perpetrated by third parties; see also, Laurie E Powers et al, ‘Interpersonal Violence and Women with Disabilities: Analysis of Safety Promoting Behaviors’ (2009) 15 Violence Against Women 1040. 145 General Comment No 3 (n 100) paras 31, 32; see also, Hassouneh, Curry (n 142) 102; see also Jennifer Nixon, ‘Domestic Violence and Women with Disabilities: Locating the Issue on the Periphery of Social Movements (2009) 24 Disabil Soc 77. 146 See also CRPD Committee, ‘Concluding Observations on the initial Report of Italy’ UN Doc CRPD/ C/ITA/CO/1 (6 October 6 2015) para 44; CRPD Committee, ‘Concluding Observations on the initial Report of Ethiopia’ UN Doc CRPD/C/ETH/CO/1 (4 November 2016) para 36 (c). 147 It is noteworthy that General Comment No 3 (n 100) para 52, discusses how women with disabilities face various barriers to accessing justice, including dismissive attitudes, negative stereotypes, lack of 140 142
mykitiuk and chadha
Article 6
191
5.2.2 Article 25—Health Article 25 guarantees the right of people with disabilities to enjoy the ‘highest attainable standard of health’.148 It begins with the declaration that states undertake all appropriate measures to ensure access to health services that are ‘gender-sensitive’.149 However, the remaining language of article 25 is predominantly gender-neutral and the provision appears to extend a formal equality framework. Health services are a crucial issue for women with disabilities because, as repeated studies confirm, they encounter myriad obstacles precluding access to health care both in high and low income countries.150 Numerous studies have identified frequent barriers to health care, including inter alia, inaccessibility of written and oral communications, inaccessible physical premises and equipment, lack of training of medical staff, and limited transportation to appointments.151 In regard to sexual and reproductive health, women with disabilities are typically viewed as not needing ‘information or services with respect to contraception, safe sex, or childbearing’ because they are perceived ‘as asexual (or sexually inadequate), not desirable, and incapable of ovulating, menstruating, conceiving or giving birth’.152 Article 25 touches on this issue by requiring states to provide people with disabilities with the ‘same range, quality and standard of free or affordable health care’, including in the ‘area of sexual and reproductive health’.153 Nevertheless, article 25 neglects to consider the disadvantageous confluence of disability and gender in sexual and reproductive health care. For example, in many countries women and girls with disabilities continue to be forcibly sterilized under the guise of health-related services, such as birth control and menstruation management.154 Further, the existence of discriminatory cultural mores permeating gynaecological care result in disabled women being discouraged from having sex, receiving limited information about accommodation, problematic reporting procedures, which discourage seeking legal redress; see also: CRPD Committee, ‘Concluding Observations on the initial Report of Hungary’ UN Doc CRPD/C/HUN/CO/1 (22 October 2012) para 32. 149 Art 25 CRPD. ibid. See eg Gloria L Krahn, Deborah Klein Walker, Rosaly Correa-De-Araujo, ‘Persons With Disabilities as an Unrecognized Health Disparity Population’ (2015) 105 Am J Public Health 198; see eg a recent American study on cancer screening found lower rates of pap tests and breast and cervical cancer screening among women with disabilities: Brooke C Steele at al, ‘Prevalence of Cancer Screening Among Adults With Disabilities, United States, 2013’ (26 January 2017) 14 Prev Chronic Dis 1, available at: . 151 ibid; see also The World Health Organization, Disability and Health Fact sheet (November 2016), available at: . The WHO notes that ‘women with mobility difficulties are often unable to access breast and cervical cancer screening because examination tables are not height-adjustable and mammography equipment only accommodates women who are able to stand’. A large-scale USA study found that women with intellectual and development disabilities were significantly less likely to receive pap tests and mammograms, see Susan M Havercamp, Haleigh M Scott, ‘National Health Surveillance of Adults with Disabilities, Adults with Intellectual and Developmental Disabilities, and Adults with no Disabilities’ (2015) 8 Disabil Health J 165–72. 152 Mykitiuk, Chadha (n 2); see also, Heather Becker, Alexa Stuifbergen, Mindy Tinkle, ‘Reproductive Health Care Experiences of Women with Physical Disabilities: A Qualitative Study’ (December 1997) 78 Arch Phys Med Rehabil 26, available at: . 153 Art 25(a) CRPD. 154 Above (n 152), and see also E Smith, Susan Murray, Aisha Yousafzai, Lackson Kasonka, ‘Barriers to Accessing Safe Motherhood and Reproductive Health Services: The Situation of Women with Disabilities in Lusaka, Zambia’ (2004) 26 Disabil Rehabil 121, available at: . 148 150
mykitiuk and chadha
192
Women with Disabilities
contraceptive use, and not assessed for sexually transmitted diseases based on the belief that they should abstain for fear of passing on the disability.155 In addition, the claim of ‘traditional values’ and strongly held cultural myths have been used to support sexually- charged practices of violence against women with disabilities, such as female genital mutilation156 and ‘virgin rape’157 as a means of HIV/AIDS cleansing. The absence of a statement in article 25 recognizing the need for safe access to sexual and reproductive health services for women with disabilities is surprising given the advocacy around this issue during the drafting of the CRPD.158 The gender issues facilitator proposed that the health article requires states to ‘develop and disseminate policies and programs’ related to family-planning, pregnancy, childbirth, and the post-natal period ‘that are inclusive of women with disabilities and protect them against any form of coercive treatment, including sterilization’.159 Kenya’s submissions regarding the CRPD’s inclusion of gender issues articulated a nuanced understanding of the interconnections between traditional cultural practices and reproductive health. Kenya proposed that the Convention requires states to: . . . undertake measures to specifically increase education, awareness creation and access to information on issues unique to women, especially those that discriminate and marginalize, particularly women with disabilities, including but not limited to: a. Single parenthood; b. Negative cultural practices; c. Negative religious beliefs and practices; and d. Reproductive health.160
General Comment No 3 attempts to address the shortcomings of article 25 by discussing at length the multiple barriers that women with disabilities experience in ‘the enjoyment of sexual and reproductive health’, as well as lack of access to information and services. Significantly, General Comment No 3 expounds on the discriminatory practices that deny the rights of women with psychosocial and intellectual disabilities to independent decision-making regarding fertility and reproductive autonomy.161 Additionally, General Comment No 3 recognizes the particular vulnerability of certain women with disabilities, 155 eg researchers found that in Zambia, ‘a generalized assumption among reproductive health service providers that women with disabilities will not be sexually active, and not require [reproductive health] services, leads to increased vulnerability to sexually transmitted infection including HIV’: ibid. 156 eg General Comment No 3 (n 100) refers to this issue with respect to Kenya and Gabon. See also Concluding Observations on the Report of Uganda (n 113) paras 34 (a), (b), and 36; CRPD Committee, ‘Concluding Observations on the initial Report of Kenya’ UN Doc CRPD/C/KEN/CO/1/(30 September 2015) para 34 (b). 157 Nora E Gorce, Reshma Trasi, ‘Rape of Individuals with Disability: AIDS and the Folk Belief of Virgin Cleansing’ (2004) 363:9422 The Lancet 1663. The authors note that women and girls with disabilities are targeted for rape because they are presumed to be virgins, physically or psychologically vulnerable, and due to the failure of the legal system to believe the victims’ accounts and provide adequate protection. 158 In its submissions to the facilitator, the Women’s International Disability Caucus wrote: ‘The exercise of their reproductive rights has strong implications for the equal rights of women in all areas of life, e.g. for the women’s role in the family and community, their participation in education, work, public and political life, their needs in the health sector, their participation in rehabilitation etc. At the same time, women with disabilities are often denied their reproductive rights on the basis of their disability.’: Women’s IDC (31 January 2006), ‘Response to the Facilitator’s Proposals on Women with Disabilities from 28/30 January 2006’, available at: . 159 Ad Hoc Committee, ‘Seventh Session on Article 6: Women with Disabilities, Proposals made by the Facilitators (Women and Children)’ pt I Art 25, available at: . 160 Draft Article 15 Bis by Kenya, Comments, proposals and amendments submitted electronically, Sixth session on Article 6: Women with Disabilities para 2, available at: . 161 General Comment No 3 (n 100) para 44.
mykitiuk and chadha
Article 6
193
including refugees and migrants, who face additional barriers due to the denial of health services.162 In article 25, we see that the CRPD disappointingly ignores an important dimension of the lives of women and girls with disabilities by failing to challenge their exclusion from reproductive and sexual health care programs.163 Although article 25 advances a formal notion of gender-equality in health services, it fails to confront the systemic issues that perpetuate barriers to health care and subordinates the health status of women and girls with disabilities around the world.
5.2.3 Article 28—Standard of Living Article 28 recognizes the right of persons with disabilities to ‘an adequate standard of living for themselves and their families’ and indicates this entails ‘adequate food, clothing and housing’.164 This article also promotes the prompt fulfilment of the right by requiring states to ‘take appropriate steps to safeguard and promote the realization’, including measures to ensure women and girls with disabilities can access ‘social protection’ and poverty reduction programmes.165 The CRPD Committee has explained that ‘social protection’ includes ‘interventions designed to guarantee basic income security and access to essential social services, with the ultimate goal of achieving social inclusion and participation in the community’.166 Gender- based disparities in economic and social status are well documented.167 Compared to men with disabilities, women with disabilities suffer greater poverty, have less education, and often carry additional expenses related to raising children.168 In some ibid para 39. Notwithstanding, the Committee has recommended that states parties address issues of discrimination and stereotyping regarding the sexual and reproductive health rights of disabled women and girls and provide access to services, in a few concluding observations. See CRPD Committee, ‘Concluding Observations on the initial Report of El Salvador’ UN Doc CRPD/C/SLV/CO/1 (8 October 8 2013) para 52 (a); CRPD Committee, ‘Concluding Observations on the initial Report of Ukraine’ UN Doc CRPD/C/UKR/CO/1 (2 October 2015) para 47. 164 This list mirrors the list in Art 11 ICESCR (n 35) para 30. 165 Sub-paragraph 2 articulates this specific duty on states. Kenya proposed an expansive obligation on states to protect disabled women in regards to social security and noting property ownership: ‘States parties undertake to ensure sustainable livelihood for women with disabilities by adopting and implementing appropriate policies and legislative measures that guarantee and enhance their access to and ownership of land and other property, access to credit, gainful employment and social security.’ Draft Article 15 Bis by Kenya (n 160) para 5. 166 Report of the CRPD Committee, ‘Inquiry concerning the United Kingdom of Great Britain and Northern Ireland carried out by the Committee under article 6 of the Optional Protocol to the Convention UN Doc CRPD/C/15/R2/Rev 1 (6 October 2016) para 27. 167 See eg research from the UK’s DFiD Information Department ‘Disability, Poverty and Development’ (February 2000), available at: ; see eg research from the USA: Shawn Fremstad, ‘Half in Ten: Why Taking Disability into Account is Essential to Reducing Income Poverty and Expanding Economic Inclusion’ (September 2009) CEPR, available at: ; see also eg Cameron Crawford, ‘Looking into Poverty: Income Sources of Poor People with Disabilities in Canada’ (2013), Institute for Research and Development on Inclusion and Society, available at: . 168 Chadha, Sheldon (n 6) 65; Helen Meekosha points out that systemic conditions exacerbate poor standards of living for women with disabilities in ‘developing countries’ because ‘poverty hits harder on women and girls due to patriarchal property ownership structures’, and ‘aid is less likely to reach women and girls who are less able to compete in situations of scarcity’. Helen Meekosha, ‘Women With Disabilities Australia: Gender and Disability’ (2004), available at: ; see also Nora E Groce, Jillian London, Michael Ashley Stein, ‘Working Paper 17: Intergenerational Poverty and Disability: The Implications of Inheritance Policy and Practice on Persons with Disabilities in the Developing World (Leonard Cheshire 162 163
mykitiuk and chadha
194
Women with Disabilities
cultures, widespread prejudice and stigma against women with disabilities engenders social isolation and concomitant deep poverty. All over the world, women with disabilities have lower incomes and experience greater hardships, particularly disabled young and elderly women and single mothers, than their non-disabled counterparts.169 In General Comment No 3, the CRPD Committee points out that ‘[p]overty is both a compounding factor and the result of multiple discrimination.’170 It is apparent that the need to redress systemic patterns of discrimination contributing to poor standards of living for women with disabilities is a global problem. It is also necessary to recognize that long-standing gender-disability inequities with respect to economic development are compounded by social exclusion. Article 28’s identification of women and girls with disabilities as recipients for ‘social protection’ and ‘poverty reduction programs’ is clearly aimed at ameliorating the gendered poverty gap suffered by women with disabilities.
5.2.4 Article 34—Committee on the Rights of Persons with Disabilities Article 34 establishes the creation of the Committee on the Rights of Persons with Disabilities, where by the CRPD Committee should consist of eighteen independent members, elected by states, to monitor the implementation of the Convention. Committee members are to be experts in the areas of disability and human rights because they are required to study state reports and issue recommendations in the form of concluding observations.171 Sub-paragraph (4) expressly stipulates gender parity in the composition of the Committee: The members of the Committee shall be elected by states parties, consideration being given to equitable geographical distribution, representation of the different forms of civilization and of the principal legal systems, balanced gender representation and participation of experts with disabilities.172
By mandating equal gender participation on the Committee, the Convention values the need to ensure a range of perspectives and recognizes diverse experiences are required to effectively evaluate the information provided by states on how the rights in the CRPD are being implemented in their countries. Gender representation is especially vital given the various provisions in the CRPD that advance the interests of women and girls with disabilities. Further, it appears that article 34 seeks to realize the goals of article 8 CEDAW, which holds that women must be provided ‘on equal terms with men and without any discrimination, the opportunity to represent their governments at the international level and to participate in the work of international organizations’.173 While the wording of article 34 clearly intends for the Committee to be fully gender- inclusive, the current reality is regrettably far from the expressed ideal. The election process for the 2017 term to fill nine vacancies resulted in all-male appointments, despite
Disability and Inclusive Development Centre, 2012), available at: : subsequently published as: Nora E Groce, Jillian London, Michael Ashley Stein, ‘Inheritance, Poverty, and Disability’ (2014) 29 Disabil & Soc 1554–68. 169 See eg Susan L Parish, Roderick A Rose, Meagan E Andrews, ‘Income Poverty and Material Hardship among U.S. Women with Disabilities’ (2009) 83 Social Service Review 33; Crawford, ‘Looking into Poverty’ (n 167) 28–32. 170 General Comment No 3 (n 100) para 59. 171 Each member serves a four-year term with the possibility of one additional term upon re-election. 172 173 Art 34(4) CRPD. Art 8 CEDAW.
mykitiuk and chadha
Article 6
195
three women campaigning for the open positions.174 The United Nations’ entity for gender equality and the empowerment of women, known as UN Women, reports that in 2014–16, there were six women out of eighteen members and for 2017–19, there will be only one woman on the CRPD Committee.175 Unfortunately, General Comment No 3 is silent on the topic of the Committee’s failure to adhere to the Convention’s promise of equal gender representation. Even though the CRPD was heralded for introducing gender parity in its Committee, the current lone female representative is symbolic of the profoundly disenfranchised status of women with disabilities and how much still needs to be accomplished in order to meaningfully protect and promote the rights of women with disabilities.
5.2.5 Omissions Although the final draft of the CRPD was approved with the intention of advancing a twin track approach that mainstreamed gender throughout the Convention in tandem with gender-focused provisions, there are several conspicuous junctures in the document where the non-existence of gender-specific language is lamentable. For example, article 11 (situations of risk and humanitarian emergencies) and article 15 (freedom from torture or cruel, inhuman or degrading treatment or punishment) do not identify gender-specific concerns that arise during periods of civil strife or the gender- related aspects of war crimes. Neither clause contemplates how women with disabilities are highly vulnerable to being raped as a form of torture in situations of armed-conflict.176 Ribet argues that article 15 is further deficient because it ‘imposes no obligation on its state signatories to consider disability as a consequence of torture, or to ever consider the specific rights or identities of people who are disabled by torture’.177 General Comment No 3 seeks to remedy these failings by repeated reference to the fact that women with disabilities are at increased risk of sexual violence in crisis settings.178 In addition, General Comment No 3 emphasizes that certain factors in emergency situations exacerbate the vulnerability of and discrimination against women with disabilities, including the lack of sanitation facilities, inaccessible buildings and lack of accessible information and barriers to communication.179 The absence of women and girls as specific categories subject to the CRPD’s reporting requirements in article 31 is also extremely problematic. The need to collect data disaggregated on gender was advocated by various delegates during the Ad Hoc Committee meetings.180 The original draft by South Korea proposed that the CRPD ‘[i]ncorporate 174 UN Women Statement on the Committee on the Rights of Persons with Disabilities (1 July 2016), available at: . 175 Ibid, in 2012–14 seven women out of eighteen members, eight women out of eighteen members in 2010–12 and five women out of twelve members in 2008–10. 176 Rangita de Silva de Alwis, ‘Mining the Intersections: Advancing the Rights of Women and Children with Disabilities Within an Interrelated Web of Human Rights’ (2009) 18 Pac Rim L & Pol’y J 295, 298, describes various situations in Asia where ‘rape is a tool of war’. 177 178 179 Ripet (n 20) 181. General Comment No 3 (n 100) para 49–50. ibid para 50. 180 See eg Ad Hoc Committee on the UN Convention on the Human Rights of People With Disabilities ‘Daily summary of discussion at the sixth session’ (2 August 2005), available at: , where the oral submissions of the National Human Rights Institutions urging that specific reference to gender-segregated data in relation to Art 6 and that states should be required to ‘produce reports in a gender-segregated fashion’; see also the Ad Hoc Committee of the CRPD (fourth session) ‘Daily summary of discussions related to Article 6’ (25 August 2004), available at: , where the International Disability Caucus and Cuba supported the disaggregation of data on gender. 181 Ad Hoc Committee, ‘Article 6L: women with disabilities third session, Comments, proposals and amendments submitted electronically by Republic of Korea’ (27 May 2004) para (b), available at: ; see also Disabled Persons International’s Towards visibility of women with disability in the UN Convention, Proposals to complement the Draft Convention in order to fulfil the Principles of Gender Mainstreaming (19 November 2004) Art 6, wherein they state ‘In our opinion, it is absolutely vital to codify at least gender-disaggregated data collection as suitable data is paramount in recognizing gender-specific problems and taking effective measures.’. 182 Facilitator’s Reports of the Ad Hoc Committee on the Convention on the Human Rights of People with Disabilities, ‘Daily summary of discussion at the sixth session’ (11 August 2005), available at: . 183 UN High Commissioner for Human Rights CEDAW Committee (10th session, 1991) General Recommendation No 18: Disabled Women UN Doc A/46/38 Supp (30 January 1992); see also CESCR Committee’s General Comment No 14: The Right to the Highest Attainable Standard of Health (Art 12), (22nd session) UN Doc E/C12/2000/4 (11 August 2000) para 20, states that the disaggregation of health and socio-economic data according to gender is essential for identifying and remedying inequalities in health. 184 As of April 2017, this recommendation was made in twenty- two out of forty- five Concluding Observations available. 185 General Comment No 3 (n 100) paras 16, 63(d) and (e). 186 During the Ad Hoc Committee’s fourth session, Landmine Survivors Network Comments, proposals and amendments on Draft Article 15bis, available at: , the Landmine Survivors Network comments on Korea’s proposed Article 15(bis) highlighting that ‘the protection of the motherhood of women with disabilities, and ensuring that women with disabilities are not deprived of their right to work due to their pregnancy or childbirth are not adequately covered’ in the CRPD. 187 eg De Alwis (n 176) 300, describes how girls with disabilities are less likely to attend school and women with disabilities have lowest literacy rates in the disability community.
mykitiuk and chadha
Article 6
197
and discrimination experienced by women and girls with disabilities with respect to schooling and work. In its submissions to the Ad Hoc Committee regarding education, UNESCO pointed out that the majority of children who do not attend school are children with disabilities and over 57 per cent of these are girls.188 The facilitator on gender issues noted that in her consultations there was ‘a majority view’ that women with disabilities should be mentioned in the substantive paragraphs dealing with education and employment; however, it is unclear why gender-specific language was omitted from these thematic areas.189 This vacuum of gender-sensitivity in articles 24 and 27 is especially alarming given the well documented linkages between lack of education and unemployment to women’s impoverishment, victimization, and further disablement.190 Finally, it is noteworthy that article 23 (respect for home and the family) does not contain reference to women and girls with disabilities. This is striking considering the ever-mounting universal recognition that women and girls with disabilities have a right to marry, found a family, and become parents.191 During the Ad Hoc Committee meetings, Qatar proposed that the CRPD include a provision promoting ‘measures to change prevailing negative attitudes’ towards marriage, sexuality, and parenthood by women and girls with disabilities and sought ‘the encouragement of the media to play an important role in removing such negative attitudes’.192 Blank et al contend that the CRPD should have included gender-specific provisions guaranteeing women with disabilities ‘equal enjoyment of family rights’ and ‘gender-sensitive measures to enable women with disabilities to exercise their roles as wife, mother, and home-maker’.193
188 UNESCO Statement Comments made at the Sixth Session of Ad Hoc Committee submitted to the UN Secretariat, UNESCO Statement on Education Article 17, Contributions from UN System Organizations, available at: . 189 Ad Hoc Committee on the Convention on the Human Rights of People with Disabilities, ‘Daily summary of discussion at the sixth session’ (11 August 2005), available at: (accessed 10 March 2017). 190 UNESCO’s submissions to the Ad Hoc Committee stated that ‘the undeniable link between poverty and education cannot be overlooked’: UNESCO Statement of Comments (n 188). 191 See De Alwis (n 176) 312: De Alwis highlights the need to bring forward a gendered disability perspective in identifying ‘customary laws and practices that discriminate against women and children in relation to their rights to marry, bear children and found a family; to have custody of their children and to inherit and own property’; see also Mykitiuk, Chadha (n 2), and General Comment No 5 (n 33) para 30. 192 Report of the third session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities UN Doc A/AC265/2004/5 (Qatar) (9 June 2004), available at: . 193 See Blanck, Adya, and Reina (n 97).
mykitiuk and chadha
Article 7 Children with Disabilities . States Parties shall take all necessary 1 measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children. . In all actions concerning children with 2 disabilities, the best interests of the child shall be a primary consideration.
. States Parties shall ensure that children 3 with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right.
1. Introduction 2. Background 3. Travaux Préparatoires 4. Paragraph 1 4.1 A ‘child’ 4.2 ‘All necessary measures’
4.2.1 Keeping Accurate Statistical Data 4.2.2 Early Intervention 4.2.3 Measures against Stigmatization
4.3 ‘all human rights and fundamental freedoms’ 4.3.1 Freedom from Violence 4.3.2 Abandonment 4.3.3 De-Institutionalization 4.3.4 Right to Life, Survival, and Development
4.4 ‘on an equal basis with other children’ 5. Paragraph 2 5.1 The Child’s ‘best interests’ 5.2 Supported Decision-Making 6. Paragraph 3 6.1 The Child’s ‘right to be heard’
6.1.1 The Collective Right to Be Heard 6.1.2 ‘due weight in accordance with their age and maturity’ 6.1.3 ‘disability and age-appropriate assistance’
198 199 201 205 205 206 207 208 209 210 211 213 214 216 218 219 219 222 224 224 226 227 227
1. Introduction While general international human rights law does not distinguish between adults and children in the application of rights and entitlements (because the same rights apply equally to all persons mutatis mutandis), such distinction is found in specialized instruments. In any event, there is a clear need to offer several specialized rights and protection to persons that are considered vulnerable. This specialized protection is reflected in discrete instruments that
bantekas
Article 7
199
deal with vulnerable persons, such as the 1951 Refugee Convention, the Convention on the Elimination of Discrimination against Women (CEDAW), as well as the 1989 Convention on the Rights of the Child (CRC). While many of the rights in the CRC are replicated in other more general instruments, some are not. The CRC recognizes four key guiding principles that permeate our understanding and construction of all pertinent rights related to children. Some of these have long been recognized as general principles, but others are new for many states. These principles are meant to apply contextually (based on the particular circumstances of each case), but also as peremptory principles of construction. As a result, they may be applied substantively (eg to interpret the child’s right to leisure) as well as a matter of procedural law.1 These principles are: a) the best interests of the child (article 3 CRC); b) respect for the views of the child (article 12 CRC); c) the right to life, survival, and development (article 6 CRC) and; d) non-discrimination (article 2 CRC).2 The CRC was the first instrument to specifically address the rights of children with disabilities, particularly in article 2(1) (non-discrimination) and article 23 (general welfare for disabled children). Article 23 CRC is to some degree a mini-treaty concerning the rights of disabled children, but article 7 CRPD and other children-related rights in the CRPD (eg article 23) constitute a significant improvement to article 23 CRC, as will be shown in this chapter.
2. Background Disabled children face a wholly different landscape as compared to non-disabled children. Firstly, the stigma of disability renders the likelihood of abandonment, neglect, and long-term institutionalization very high. Sexual and other forms of trafficking (eg for begging) are equally high among disabled children.3 Thirdly, whereas non-disabled children will have some legal capacity, whether through their guardian or independently, disabled children usually possess no legal capacity and are subject to substitute decision- making processes that violate article 12 CRPD. As a result, the rights guaranteed under the CRC, which are taken for granted in respect of non-disabled children, are usually exercised through intermediaries in the case of their disabled counterparts. Hence, it is important when one encounters a treaty or other provision conferring rights on disabled children to enquire about the nature of these rights, their justiciable character, as well as how they are meant to be exercised. Finally, even states that have ratified the CRPD may violate the rights of disabled children in a particularly heinous manner, albeit in ways that are un-detected by a local population that always attaches stigma to disabled children.4 1 See CRC Ctee, General Comment No 14 (2013) on the rights of the child to have his or her best interests taken as a primary consideration, UN Doc CRC/C/GC/14 (29 May 2013) para 6. 2 See Geraldine Van Bueren, The International Law on the Rights of the Child (Martinus Nijhoff 1995) 15, who refers to these as the ‘four P’s’, namely participation, protection, prevention (of harm), and provision (of assistance). Books dedicated to the law of disabled children are sparse. See Janet Read, Luke Clements, and David Ruebain, Disabled Children and the Law: Research and Good Practice (Jessica Kingsley 2009); Steve Broach, Luke Clements, and Janet Read, Disabled Children: A Legal Handbook (LAG 2015); Anne-Marie Callus, Ruth Farrugia, The Disabled Child’s Participation Rights (Routledge 2016); Maya Sabatello, ‘The Politics of the Child’s Right to Identity in a Disability-Free Society’ (2009) 17 International Journal of Children’s Rights 171. 3 CRPD Committee, ‘Concluding Observations on the Initial Report of Ukraine’ UN Doc CRPD/C/ UKR/CO/1 (2 October 2015) paras 13–14. 4 See eg HRW, ‘End Discrimination, Exclusion of Children with Disabilities (2013), available at: .
bantekas
200
Children with Disabilities
It is instructive that neither the UDHR nor the two covenants (ICCPR and ICESCR) made a reference to disability, let alone disabled children. Despite the adoption by the ILO of vocational rehabilitation standards in the 1950s,5 international standard setting effectively began in the 1970s with very modest calls towards a social or human rights model of disability, which demanded equality, inclusion, autonomy, and participation. In 1971 and 1975, the UN General Assembly adopted the Declaration on the Rights of Mentally Retarded Persons6 and the Declaration on the Rights of Disabled Persons respectively.7 Disappointingly, the definition of disability in the latter declaration indicated that disabled persons could not live independently.8 Yet, these declarations introduced disability rights as human rights, but did not make any reference to disabled children. In 1981, the UN General Assembly declared an International Year of Disabled Persons and, in 1982, adopted a World Programme of Action Concerning Disabled Persons,9 which aimed to ‘promote effective measures for the prevention of disability, rehabilitation and the realization of the goals of “full participation” of disabled persons in social life and development and of “equality” ’.10 The Programme of Action set up an expert review mechanism that sought to measure progress made by and furthermore declared 1983–92 as the UN Decade of Disabled Persons. This process culminated, among others, in two distinct conventions, namely ILO Convention on the vocational rehabilitation and employment of disabled persons (Convention 159) (1983) and; an Additional Protocol to the American Convention on Human Rights in the area of Economic, Social, and Cultural Rights, ‘Protocol of San Salvador’ (1988).11 Article 18 of the latter, entitled protection of the handicapped, does not specifically refer to children, but encompasses them indirectly, yet it does not confer upon them the same rights as those offered to non-disabled children. Moreover, article 18 is misconceived from the outset as the chapeau spells out the core aim of disability rights, which is ‘to receive special attention designed to help [children] achieve the greatest possible development of [their] personality’. This wording is echoed in article 18(4) of the 1981 African Charter on Peoples’ and Human Rights, which states that: ‘the aged and the disabled shall also have the right to special measures of protection in keeping with their physical or moral needs’. The CRC was a historic achievement12 for child disability and we have already made fleeting reference to articles 2 (non-discrimination) and 23, which address this issue. ILO, Vocational Rehabilitation (Disabled) Recommendation (No 99) (22 June 1955). 7 UNGA Res 26/2856 (20 December 1971). UNGA Res 30/3447 (9 December 1975). 8 Para 1 refers to: ‘any person unable to ensure by himself or herself, wholly or partly, the necessities of a normal individual and/or social life’. 9 UNGA Res 37/52 (3 December 1982). 10 There were some references to disabled children. In discussing rehabilitation it called for early prevention and detection. It further called for ‘the normal development and maturation process of disabled children [to] be given the maximum attention’. Moreover, it was stated that: ‘for many children, the presence of an impairment leads to rejection or isolation from experiences that are part of normal development. This situation may be exacerbated by faulty family and community attitudes and behaviour during the critical years when children’s personalities and self-images are developing.’ The World Program of Action is available at: . 11 Art 13(3)(e) states that: ‘Programs of special education should be established for the handicapped, so as to provide special instruction and training to persons with physical disabilities or mental deficiencies.’ Art 18 may be viewed as referring to disabled children as a corollary of the obligation of states to assist the ‘families of the handicapped’. In 1999 the OAS adopted the Inter-American Convention on the Elimination of All Forms of Discrimination Against Persons with Disabilities. Without the input of disabled persons organizations this convention relied on the medical model and failed to include a single reference to disabled children. 12 See generally Sharon L de Detrick, A Commentary on the United Nations Convention on the Rights of the Child (Martinus Nijhoff 2012). 5 6
bantekas
Article 7
201
Yet, article 23 was drafted in a different way as compared to other rights in the CRC. Crucially, it does not require that states shall take appropriate measures, but that they should. The official justification behind this distinction is not satisfactorily explained in the travaux to the CRC. Moreover, the measures of ‘special care’ afforded to disabled children under article 23 are subject to a state’s available resources (paragraph 2), while no similar resource constraint is placed on other articles in the CRC. It is clear that participating states viewed child disability rights as chiefly resource-dependent, rather than principally requiring a wholesale change to existing attitudes and policies. With such key limitations upon article 23, as opposed to all other rights in the CRC, child disability rights were viewed through the lens of development and progressive realization, which showed little understanding of the key pursuits of the disability movement as a whole. At the end of the Decade of Disabled Persons, UNGA adopted the UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities.13 The Standard Rules set out 22 rules, of which rules 1, 5, and 6 concern disabled children. From 1994 until the negotiating process of the CRPD a number of soft law instruments were adopted, the aim of which was to promote inclusive education, equal educational opportunities, and funding for disabled children. These consist of: a) the 1994 UNESCO Salamanca Statement and the Framework for Action on Special Needs Education; b) the 1995 Copenhagen Declaration and Program of Action of the World Summit for Social Development; c) several resolutions by UN organs and bodies, such as UN Commission on Human Rights Resolution 1998/3114 and the 2000 Dakar Statement and Framework for Action, adopted by the World Educational Forum. Finally, it should not be forgotten that neither the 2000 Millennium Declaration nor the Millennium Development Goals (MDGs) mentioned disability in the eight Goals or the twenty-one attendant targets and their sixty indicators. This is a glaring omission, given that at the very least disabled children could have featured in Goal 2, which concerned universal education. Although this was ultimately achieved in 2010 and Goal 2 encompassed disabled children,15 the negotiations for the CRPD commenced without the inclusion of disabled children in the most comprehensive developmental project in the history of development finance.
3. Travaux Préparatoires During the first session of the Ad Hoc Committee, Mexico submitted a Working Paper, which was effectively the first attempt towards a draft of the Convention. This contained no reference to disabled children and no specific article on the issue whatsoever.16 There was an equal absence of disabled children—other than a reference to disability- appropriate education—in a Position Paper by China.17 Given that the first session was UNGA Res 48/96 (20 December 1993) Annex. Res 1998/31 (17 April 1998), paras 13 and 24; see also ECOSOC Res 1997/20 (21 July 1997) on children with disabilities; UNGA Res 52/107 (12 December 1997) para II(4); Commission for Human Rights Res 2000/51 (25 April 2004) para 24. 15 See UN, ‘Disability and the Millennium Development Goals: A Review of the MDG Process and Strategies for Inclusion of Disability Issues in Millennium Development Goal Efforts’ (UN 2011) ix. 16 Mexico Working Paper UN Doc A/AC265/WP 1 (2002). 17 Position Paper by China UN Doc A/AC265/WP 3 (2002); equally, the Position Paper of the EU UN Doc A/AC265/WP 2 (2002); equally Report of the United Nations Consultative Expert Group Meeting on International Norms and Standards relating to Disability UN Doc A/AC265/CRP 4 (2002). 13 14
bantekas
202
Children with Disabilities
chiefly devoted to organizational matters,18 it is only the three position papers and summaries of the international legal framework that standout in terms of law and policy. It should be noted that education featured in the majority of documents, but this was not directly associated with disabled children. At the second session more technical issues were raised, including also an emphasis on the social model of disability, as well as key concepts such as accessibility and universal design were discussed, but to a large degree there was no direct reference to disabled children, other than mention of educational priorities for the disabled.19 A fleeting reference to children and the CRC was made by regional groupings and inter-governmental organizations, but this was hardly on substantial issues.20 The Bangkok Recommendations specifically referred to the rights of disabled children and particularly to intersectional discrimination.21 Significantly, the Beirut Declaration, while not making a direct reference to disabled children, included a recommendation as to the treatment that should be afforded by government to families with disabled members.22 This is an important element in any scheme or policy concerning disabled children because as will become evident in the discussion on the substantive elements of article 7 CRPD, support to families enhances de-institutionalization, as well as the prospect of abandonment and social exclusion, among others. Overall, the absence of any substantive discussion of disabled children is reflected in the Report of the second session.23 At the end of the session and during the process by the Working Group, however, the Chair’s Draft Elements of a Comprehensive Convention included a distinct provision on the rights of disabled children, albeit it is not clear what were the grounds that influenced the drafting of this provision.24 18 See Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities UN Doc A/57/357 (2002). 19 See Report of the UN Secretary-General, ‘Issues and Emerging Trends related to Advancement of Persons with Disabilities’ UN Doc A/AC265/2003/1 (2003) para 10; Report of the UN Secretary-General, ‘Overview of Issues and Trends related to Advancement of Persons with Disabilities’ UN Doc A/AC265/3003/2 (2003) paras 15 and 18, referring to the Standard Rules and other instruments in which reference to disabled children’s rights is made; DPI Japan further noted that: ‘Persons with disabilities, at every stage of their life, have the right to be integrated to the education of the persons without disabilities of their age. Notwithstanding, children with hearing impairment have the right to receive education in group through sign language’; see ‘NGO Contributions to the Elements of a Convention’, available at: . 20 Note by the UN Secretary-General, ‘Views submitted by Governments, intergovernmental organizations and United Nations bodies concerning a comprehensive and integral international convention on the protection and promotion of the rights and dignity of persons with disabilities’ UN Doc A/AC265/2003/4+A/ AC265/2003/4/Corr 1 (2003) paras 61 and 69; equally, Danish Institute of Human Rights, ‘Discussion Paper’ UN Doc A/AC265/2003/CRP/9 (2003). 21 Bangkok recommendations on the elaboration of a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities UN Doc A/AC265/2003/CRP/10 (2003) para 13(c); equally, South African Mission to the UN, ‘Note Verbale’ UN Doc A/AC265/2003/CRP/ 11 (2003). 22 Beirut Declaration and Recommendations on the elaboration of a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities, UN Doc A/ AC265/2003/CRP/12 (2003), Recommendation 4; the IDA made the point that: ‘Disabled children are often denied the right to grow up as a part of a family and disabled adults are often denied the right to marry and have and raise children’; see ‘NGO Contributions to the Elements of a Convention’ available at: . 23 See UN Secretary-General, ‘Report of the Second Session’ UN Doc A/58/118 & Corr1 (3 July 2003). 24 Chair’s Draft Elements of a Comprehensive Convention (December 2003), available at: .
bantekas
Article 7
203
This draft article is remarkable in two respects. On the one hand, it addresses issues that are pertinent to disabled children and which later became the backbone for the CRPD Committee’s concluding observations. On the other hand, however, it omits any reference whatsoever to the three fundamental principles underlying children’s rights, as articulated in the CRC. It is truly unfortunate that elements of this draft article did not make it into the current version of article 7 CRPD. UNICEF made a proposal during the second session, which although did not elaborate much on the rights of disabled children, suggested several issues that should be addressed by the Ad Hoc Committee.25 The UNICEF proposal addresses a number of issues that were ultimately inserted in discrete provisions of the CRPD, such as articles 8, 23, and 24 and significantly expands the range of issues in draft article 18. At the third session of the Ad Hoc Committee the Russian Federation addressed a Letter to the UN Secretary-General, which was entitled ‘Recommendations of the seminar on Social integration of youth with disabilities in the countries of the Commonwealth of Independent States’.26 The Letter raised in a comprehensive manner several issues that concern protections and guarantees for children with disability, including: environmental accessibility; information and data collection; access to employment; vocational training and re-training; social innovations; and equal participation. Following a significant amount of proposals from NGOs, states, and inter-governmental organizations, the Working Group came up with a much revised draft article 16.27 Draft article 16 of the third session retains much of what was contained in its predecessor at the second session, but is cognizant of the fact that many issues that affect disabled children equally affect adults and that these will be addressed in other provisions in the Convention. Crucially, paragraph 1 introduces a jurisdictional element, which was not only removed from the final version of article 7, but from the CRPD as a whole. The Working Group, in a footnote to draft article 16, noted that paragraphs 2, 3, and 4 were based on article 23 CRC, albeit from a disability perspective. It cautioned that a verbatim reproduction of article 23 CRC may not adequately deal with issues faced by disabled children.28 The input by states and NGOs reveals some of the background discussions. Vietnam proposed adding to draft article 16(3)(a) after ‘comprehensive services,’ the words ‘including early detection, intervention and rehabilitation’.29 Ireland, on behalf of the EU, argued that the current proposal effectively alters the CRC, which in its view was not a positive development to children’s rights. New Zealand argued that due to time restraints the Working Group transplanted article 23 CRC into the draft text of article 16, with a poor result. New Zealand agreed with the EU that since almost all states involved in the drafting of the CRPD were signatories to the CRC, an article on children with disabilities would not add to the international body of law. If this was determined to be necessary, however, it should be elaborated so as to improve on the CRC, for example, by addressing the ‘extra vulnerabilities’ of children with disabilities, including rejection, UNICEF Proposal, available at: . UN Doc A/AC265/2004/1 (2004). 27 Annex I: Draft Comprehensive and Integral Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities UN Doc A/AC265/2004/WG/1 (27 January 2004) 20. 28 ibid. 29 Daily Summary of Discussions related to Article 16, vol 4 No 5 (28 May 2004), available at: . 25 26
bantekas
204
Children with Disabilities
abandonment, reduced aspirations by parents, reduction in opportunities and rejection by families and by emphasizing early intervention.30 Uganda proposed the addition of two further paragraphs: the first expressly reiterating the child’s best interests principle, while the second aimed to prohibit sterilization.31 While several state delegations, particularly from the developing world, argued that article 23 CRC should remain the basis for any discussion, NGOs, such as Save the Children, made the point that the core principles of the CRC—non-discrimination, the best interest of the child, life survival and development, and participation—are not sufficiently addressed when it comes to children with disabilities, and the implementation mechanisms of the CRC are not sufficiently known by governments.32 Indeed, this is true even at the time of writing. In general, NGOs strongly believed that neither article 23 CRC nor draft article 16 effectively addressed the rights of disabled children.33 The bracketed version of draft article 16 in the report of the third session of the Ad Hoc Committee incorporates all the differences in both substance and language.34 During the fourth session of the Ad Hoc Committee, draft article 16 was not discussed.35 Instead, the Ad Hoc Committee examined draft articles 1 to 15 and 24bis. This was probably a good thing as far as draft article 16 was concerned because it allowed participating stakeholders to take stock of the opinions expressed and deal with them at a subsequent session following careful consideration. Draft article 16 was not discussed during the fifth session of the Ad Hoc Committee. Nonetheless, there was extensive debate on the right to family life, which is not only correlated to the rights of disabled children, but key issues addressed in draft article 16 and later in the final version of article 7, such as the principle of ‘best interests’ were discussed in the context of the right to family life.36 Indeed, the best interests principle features in both articles 7 and 23 CRPD. Readers should consult commentary analysis in respect of those other provisions of the CRPD for further insights on these key issues.37 By the time of the seventh session the facilitator had set out several provisions with reference to children, namely: the preamble; article 3 (general principles); article 4 (general obligations); and article 7 (disabled children), albeit a comment was inserted querying whether in fact the most appropriate place for the rights in article 7 was article 4.38 The suggested draft of article 7 was slightly different to the final version. Paragraph 1 simply obliged states to ‘ensure the equal rights of children with disabilities to the enjoyment of all rights set out in this Convention’. In addition, a fourth paragraph was inserted, at the instigation of Canada (it seems).39 Despite several variations, all state delegations were in agreement with the general content of children’s rights. There was some tinkering with words, particularly whether the 31 32 33 ibid. See Indian proposal, ibid. ibid. See NHRI contributions, ibid. Ad Hoc Committee, ‘Report of the Third Session’ UN Doc A/AC265/2004/5 (9 June 2004) 36–37. 35 See Note by the Secretary-General, ‘Report of the Ad Hoc Committee on its Fourth Session’ UN Doc A/ 59/360 (14 September 2004). 36 Daily Summary of Discussion at the Fifth Session, vol 6 No 9 (3 February 2005), available at: . 37 See Report of the Ad Hoc Committee on its Fifth Session UN Doc A/AC265/2005/2 (23 February 2005) paras 94–125. 38 Seventh Session, ‘Proposals Made by the Facilitators (Women and Children)’, available at: . 39 Comments, Proposals and Amendments submitted Electronically, available at: . 30 34
bantekas
Article 7
205
best interests principle should be phrased as ‘paramount’ or ‘primary’, but this was not insurmountable. South Africa emphasized that more was needed in order to ensure that disabled children are empowered to achieve equality with non-disabled children (equally UNICEF). This is of immense significance and its inclusion in the final version of the CRPD makes it stand out against the CRC. Interestingly, UNICEF was the only delegation to raise the issue of legal capacity, which never made it in the final draft. By the end of the seventh session, there was general agreement on the fundamental contours of what was now draft article 7. Paragraphs 2 and 3 are identical to the final version of the CRPD, but paragraph 1 was not, with the issues identified during the seventh session still being somewhat contentious, but hardly insurmountable. Paragraph 1 read as follows: States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms and ensure the equal rights of children with disabilities to the enjoyment of all rights set out in the present Convention.40
Effectively there was very little to argue during the penultimate eighth session of the Ad Hoc Committee and the final wording of paragraph 1 was not particularly thorny. The drafting committee produced four revised texts. The first culminated in the current version of paragraph 1 and introduced some minor linguistic variations to paragraphs 2 (‘best interests’ as opposed to ‘best interest’) and 3 (‘age sensitive rather than ‘age appropriate).41 The second revised text42 retained the two minor linguistic modifications and was not subject to further changes; it is the current text of article 7 CRPD. Hence, no further additions or modifications were made to article 7 in the third and fourth revised texts.43
4. Paragraph 1 4.1 A ‘child’ A child is defined under article 1 CRC as ‘every human being below the age of 18 years, unless under the law applicable to the child, majority is attained earlier’.44 Given no further elaboration in the CRPD and article 7’s reliance on the CRC there is no reason to presume that the definition of a child from the perspective of age is different. The ‘age of majority’ refers to the possession of control over one’s person, decisions and actions, and coincides in time with the termination of legal authority exercised by the child’s parents or guardians.45 Some states have decreased this age limit to serve existing policies. For example, Turkmenistan considers that when a child reaches sixteen years of age it has
40 Report of the Ad Hoc Committee on its Seventh Session UN Doc A/AC265/2006/2 (13 February 2006) 11. 41 First Revised Text (13 September 2006) by Stefan Barriga. 42 Second Revised Text (3 October 2006) by Stefan Barriga. 43 See Final Report of the Ad Hoc Committee at its Eighth Session UN Doc A/61/611 (6 December 2006). 44 eg in Iran the age of majority for boys is 14 and 9 for girls—see www.youthpolicy.org/factsheets/country/ iran/. 45 Although an unborn child may in some circumstances be regarded as a ‘child’, in most jurisdictions the term ‘child’ refers to a child after it has been born—see R v Newham London Borough Council, ex parte Dada (1995) 1 FCR 248.
bantekas
206
Children with Disabilities
reached adulthood and therefore does not benefit from child-related disability benefits. This is contrary to the express wording of the CRPD46 and the CRC.47 The age of majority is not the same as the age of sexual consent, the age at which one is allowed to consume alcohol, or the age one is allowed to vote. These may well differ from the age of majority and are not addressed by article 7 CRPD. The age of majority for disabled children concerns their legal capacity and as such the applicable law may found in article 12 CRPD.
4.2 ‘All necessary measures’ This phrase is common in human rights treaties and also in the majority of provisions of the CRPD. The term ‘measures’ is a broad umbrella reference to policies, legislation, and action and largely corresponds to the three duties associated with human rights obligations, namely to respect, protect, and fulfil.48 An accurate understanding of necessary measures may be found in article 4 CRPD, which sets out the ‘general measures’ of implementation required of states parties. A ‘measure’ is ‘necessary’ if it constitutes a sine qua non condition for the implementation of a particular right or freedom. This further entails that states are not permitted to defend their inaction by reference to insufficient resources,49 particularly since the vast majority of rights in the CRPD are not subject to progressive realization. In fact, one of the key distinctions of article 7 CRPD from article 23 CRC is that the latter is subject to resource limitations. Article 7 CRPD sets out a new paradigm for child disability rights, in the sense that resource constraints and progressive realization are absent. States must commit ‘all necessary resources’ in order to realize the rights in article 7.50 In fact, the resource limitation and progressive realization in article 23 CRC must be deemed as having been eliminated as a result of the adoption of article 7 CRC. This is because article 7 CRPD constitutes a subsequent agreement or practice in accordance with article 31(3)(a) and (b) of the 1969 Vienna Convention on the Law of Treaties (VCLT). This observation is even more important given that a significant, but not the only, factor contributing to violations of the rights of disabled children is poverty.51 Crucially, poverty is not measured by reference to one’s annual income or a country’ gross domestic product. Whereas a country’s gross domestic product (GDP), which represents the market value of its products and services, may be high, the standard of living of its people can still remain relatively low. This is because GDP is not a measure of personal income, nor does it take into account the disparity in the distribution of wealth or the enjoyment of essential services and goods such as healthcare, education, water, and food. The 2014 46 CRPD Committee, ‘Concluding Observations on the Initial Report of Turkmenistan’ UN Doc CRPD/ C/TKM/CO/1 (13 May 2015) para 17. 47 CRC Ctee, ‘Concluding Observations on the Combined Second to Fourth Periodic Reports of Turkmenistan’ UN Doc CRC/C/TKM/CO/2–4 (10 March 2015) para 42. 48 See CRC Ctee, ‘General Comment No 9: The Rights of Children with Disabilities’ UN Doc CRC/C/ GC/9 (27 February 2007) paras 17–25. 49 ibid para 20. 50 CRPD Committee, ‘Concluding Observations on the Initial Report of Montenegro’ UN Doc CRPD/C/ MNE/CO/1 (22 September 2017) para 15. 51 See Gabrielle Preston (ed), A Route out of Poverty? Disabled People, Work and Welfare Reform (Child Poverty Action Group 2006); Daniel Mont, ‘Childhood, Disability and Poverty’ Working Paper 25 (2014), available at: ; Donna Wynd, ‘It Shouldn’t Be this Hard: Children, Poverty and Disability’ (Child Poverty Action Group 2015), available at: .
bantekas
Article 7
207
Human Development Report, noted that the ‘universal provision of basic social services can raise social competences and reduce structural vulnerability’. It goes on to show that even poor countries can offer social protection or universal basic services. It uses as examples South Africa’s Child Support Grant, which cost 0.7 per cent of GDP in 2008–09 and reduced the child poverty rate from 43 per cent to 34 per cent. The same is true of Brazil’s Bolsa Família programme, which cost 0.3 per cent of GDP in 2008–09 and accounted for 20–25 per cent of the reduction in inequality.52 The connection between ‘wellbeing’ from the perspective of the human development index (HDI) and disability is crucial from a resource perspective. If disability is perceived from a narrow medical lens, rather than a holistic social lens, then a state may deem itself compliant with the CRPD if it were simply to address the medical dimensions of disability. In this light, some of the key contributory causes to the violations of rights of disabled children, particularly stigmatization, lack of awareness, lack of inclusive education, and long-term institutionalization, all of which are both structural and systemic in nature, would escape remedial action. That is why it is crucial for the CRPD Committee, as well as the CRC Committee, among others, to constantly stress in the context of article 7 (and all other rights) that states must first and foremost amend their legal and political stance to the phenomenon of disability. Even so the medical model of disability constitutes official policy in several states parties. In some, as was the case with Paraguay, it was proclaimed as such directly.53 The CRC Committee has expressed concern that some states parties give precedence to an integrative approach instead of eliminating the physical, socioeconomic and cultural barriers that prevent the full inclusion of disabled children in schools and society.54 The CRPD Committee has moreover chastised the application of a welfare or charity model in certain states where it has identified it.55 In the case of Costa Rica, the CRPD Committee regretted that the National Child Welfare Agency reflected ‘the assistance-based and irregular situation model, disregarding the rights of children with disabilities’.56 The following two subsections focus on three discrete ‘measures’ required of states parties under paragraph 1 of article 7, as identified by the CRPD Committee in its concluding observations. These consist of accurate maintenance of statistical data and information concerning disabled children; identifying and combating stigmatisation through the introduction of appropriate policies and; early intervention.
4.2.1 Keeping Accurate Statistical Data This is a general obligation on states parties under article 31 CRPD. In the context of article 7 CRPD it serves several practical dimensions.57 For example, it may show whether a state has reduced the number of disabled children in long-term institutions and whether UNDP, Human Development Report (UNDP 2014) 5. CRPD Committee, ‘Concluding Observations on the Initial Report of Paraguay’ UN Doc CRPD/C/ PRY/CO/1 (15 May 2013) para 19. 54 CRC Ctee ‘Concluding Observations on the Combined Third to Fifth Periodic Reports of Mauritius’ UN Doc CRC/C/MUS/CO/3-5 (27 February 2015) para 49. 55 CRPD Committee, ‘Concluding Observations on the Initial Report of Mexico’ UN Doc CRPD/C/ MEX/CO/1 (27 October 2014) para 15; CRPD Committee, ‘Concluding Observations on the Initial Report of Guatemala’ UN Doc CRPD/C/GTM/CO/1 (30 September 2016) para 23. 56 CRPD Committee, ‘Concluding Observations on the Initial Report of Costa Rica’ UN Doc CRPD/C/ CRI/CO/1 (12 May 2014) para 15. 57 See also, CRC Ctee, General Comment No 9 (n 48) para 19. 52 53
bantekas
208
Children with Disabilities
in turn it has succeeded in placing high numbers in foster care or reintegrated them with their families. Moreover, disaggregated data allows policymakers to fully appreciate the situation of and discrimination faced by children with disabilities, particularly indigenous children with disabilities, so as to formulate targeted programmes with a view to tackling the exclusion they face.58 In the case of Iran, the CRPD Committee pointed out that the absence of disaggregated data about girls and boys with disabilities’ access to health, education, an adequate standard of living, including social protection, and enjoyment of sports, leisure, and cultural activities did not allow authorities and civil society to take appropriate remedial measures.59 In some cases, however, states manipulate data through definitional alterations. Azerbaijan was found by the CRC Committee to have the fifth highest child mortality rate in Europe, but its definition of a ‘live birth’ was not consistent with the internationally recognized WHO definition.60 The CRPD Committee deplored the absence of data on disabled children’s births so as to be able to correlate these to Azerbaijan’s high infant mortality rate and ‘particularly how this state of affairs was affecting the birth registration of boys and girls with disabilities’.61 Some states have failed to collect sufficient data,62 while others have failed to collect even rudimentary data on disabled children.63 The situation is further exacerbated in respect of vulnerable disabled children, particularly those living in indigenous communities.64 The absence of data makes it impossible to assess several phenomena that pertain to obligations incumbent on states parties, such as the prevalence of abandonment.65 In some cases, the absence of disaggregated data has made it impossible to understand the prevalence of violence against disabled boys and girls, as was the case with Tunisia.66
4.2.2 Early Intervention This is a crucial policy measure67 and possesses at least two distinct dimensions. The first concerns early identification of disabilities in children,68 which should be combined with 58 CRPD Committee, ‘Concluding Observations on the Initial Report of Canada’ UN Doc CRPD/C/ CAN/CO/1 (8 May 2017) para 18(a). 59 CRPD Committee, ‘Concluding Observations on the Initial Report of Iran’ UN Doc CRPD/C/IRN/ CO/1 (10 May 2017) para 16(d). 60 CRC Ctee, ‘Concluding Observations on the Combined Third to Fifth Periodic Reports of Azerbaijan’ UN Doc CRC/C/AZE/CO/3-4 (12 March 2012) para 34. 61 CRPD Committee, ‘Concluding Observations on the Initial Report of Azerbaijan’ UN Doc CRPD/C/ AZE/CO/1 (12 May 2014) paras 18–19. 62 CRPD Concluding Observations on Montenegro para 14(b); CRPD Committee, ‘Concluding Observations on the Initial Report of Italy’ UN Doc CRPD/C/ITA/CO/1 (6 October 2016) paras 15–16 63 CRPD Committee, ‘Concluding Observations on the Initial Report of Argentina’ UN Doc CRPD/C/ ARG/CO/1 (8 October 2012) para 15. 64 CRPD Committee, ‘Concluding Observations on the Initial Report of Peru’ UN Doc CRPD/C/PER/ CO/1 (9 May 2012) para 16. 65 ibid. 66 CRPD Committee, ‘Concluding Observations on the Initial Report of Tunisia’ UN Doc CRPD/C/ TUN/CO/1 (13 May 2011) paras 16 and 17(a). 67 See Michael J Guralnick, Forrest C Bennett (eds), The Effectiveness of Early Intervention for At-Risk and Handicapped Children (Academic Press 1987). 68 This was incidentally held by the ECtHR to constitute an obligation on states in R R v Poland, App No 27617 ECtHR judgment (26 May 2011): A Polish woman had been deliberately denied access to prenatal genetic tests because the doctors believed that the victim would have exercised her right to abortion if she discovered the foetus’ abnormality. The Court found a violation of Art 8 ECHR because Polish law did not include any effective mechanisms which would have enabled the applicant to have access to the available
bantekas
Article 7
209
appropriate registration at birth (in accordance with article 18(2) CRPD), which also eliminates the likelihood of abandonment.69 Early identification further ensures that in societies where disability is a stigma, parents will be provided with appropriate information and support that will allow them to care for their disabled child.70 Empirical evidence suggests that early intervention in children with developmental disorders and intellectual development has been significantly enhanced.71 In the particular context of the Cook Islands the CRPD Committee recommended that the state party: (a) Establish a permanent early identification and intervention programme for children with disabilities, from birth to school age; (b) Identify and provide additional paediatric specialist services that are not currently available; (c) Provide families of children with disabilities financial assistance, training and support mechanisms to ensure children’s inclusion and full participation in the family and the community.72 This obligation is also iterated in articles 23(3) and 25(b) CRPD. The second dimension allows for the application of such policies that ensure disabled children achieve their full potential.73 These secondary systems must: be capable of early intervention including treatment and rehabilitation providing all necessary devices that enable children with disabilities to achieve their full functional capacity in terms of mobility, hearing aids, visual aids, and prosthetics among others.74
A disabled child that has access to treatment and rehabilitation will not only have the opportunity of remedying its disability, if at all possible, but will be better placed to adapt to its environment. It also takes away much of the strain from parents and allows disabled children to make the most of the educational and other opportunities available to them. It is also a significant aspect of the child’s right to survival and enhances the right to independent living.
4.2.3 Measures against Stigmatization The stigmatization of children with disabilities is the direct result of prejudice,75 lack of awareness, and stereotyping that may, but is not always successfully, curtailed through
diagnostic services and to take, in the light of their results, an informed decision as to whether or not to seek an abortion. 69 CRPD Committee, ‘Concluding Observations on the Initial Report of Slovakia’ UN Doc CRPD/C/ SVK/CO/1 (17 May 2016) para 26; CRPD Committee, ‘Concluding Observations on the Initial Report of Armenia’ UN Doc CRPD/C/ARM/CO/1 (8 May 2017) para 12(a). 70 CRC Ctee, General Comment No 9 (n 48) para 56. 71 See Tristram Smith, Annette D Groen, and Jacqueline Wynn, ‘Randomized Trial of Intensive Early Intervention for Children with Pervasive Developmental Disorder’ (2000) 105 Amer J Mental Retardation 269. 72 CRPD Committee, ‘Concluding Observations on the Initial Report of Cook Islands’ UN Doc CRPD/ C/COK/CO/1 (30 October 2014) para 16. 73 CRPD Committee, ‘Concluding Observations on the Initial Report of Cyprus’ UN Doc CRPD/C/CYP/ CO/1 (8 May 2017) paras 19–20. 74 CRC Ctee, General Comment No 9 para 57. 75 See Michael Simmons, Hearing Loss: From Stigma to Strategy (Peter Owen 2005); David E Gray, ‘Perceptions of Stigma: The Parents of Autistic Children’ (1993) 15 Sociology of Health & Illness 102; Sara E Green, ‘What Do you Mean What’s Wrong with Her? Stigma and the Lives of Children with Disabilities’ (2003) 57 Social Science & Medicine 1361.
bantekas
210
Children with Disabilities
educational means or public campaigns.76 A short-term measure may be to restrict the freedom of expression by characterizing ‘stigmatization’ a particular form of hate crime and taking positive action by state authorities.77 Although this will allow the criminal prosecution of particular offenders it will not help eliminate the root causes of prejudice and misinformation. The most effective means of limiting it in practice is by sustained awareness campaigns78 and the introduction of disability-related information in school curricula and the public at large.79 Article 8 CRPD was drafted (and demanded by relevant stakeholders) with a view to combatting entrenched stereotypes and prejudices. Families, where much of the stigma lies, should be provided with ample support80 and appropriate disaggregated data should be kept and intervention must be early and particularly in areas where stigma and stereotyping is prevalent, states must adopt early warning mechanisms.81 The removal of stigmatization is important as a matter of policy because as we will see in subsequent sections, stigmatization is one of the key causes for violence and abandonment of disabled children.82 Moreover, stigma reinforces low self-esteem and as such leads to exclusion from all aspects of social life.83 In many cases, stigma forces even well- intentioned families to avoid registering the child as disabled and thus failing to receive the required support.84 Inter-sectional stigmatization has been implicitly referred to by the CRPD Committee, particularly in relation to disabled children from social groups that are stigmatized on other grounds, such as indigenous peoples,85 or Roma.86
4.3 ‘all human rights and fundamental freedoms’ Article 7 is clearly situated within two distinct, yet wholly inter-related, fields of law, namely (general) international human rights law and international child law. While the latter is effectively a branch of the former, the distinction serves to underline its lex specialis character, particularly through the enunciation of discrete rights that are not found in general human rights law. These are the child’s best interests and the right of the child to be heard. There are no equivalent rights to these for adults, their aim being
76 This was noted in respect of all disabled persons in the Report of the UN Secretary-General, ‘Issues and Emerging Trends related to Advancement of Persons with Disabilities’ UN Doc A/AC265/2003/1 (2003) para 3. 77 See Đorđević v Croatia, (2012) ECHR 1640, where the ECtHR held that a campaign of harassment and abuse against a mentally disabled boy and his mother by children in their neighbourhood gave rise to a positive obligation on the part of the authorities to protect them. 78 See CRPD Committee Concluding Observations on Armenia para 12(e), suggesting the promotion of a positive image of disabled children; CRPD Committee, ‘Concluding Observations on the Initial Report of Thailand’ UN Doc CRPD/C/THA/CO/1 (12 May 2016) para 18(c). 79 In its Concluding Observations on Iran para 17(b), the CRPD Committee noted that the government must: ‘sensitize families and communities about the respect of the evolving capacities of children with disabilities, combat stereotypes against them’. 80 See Art 8(1)(a) CRPD. 81 CRPD Committee, ‘Concluding Observations on the Initial Report of Kenya’ UN Doc CRPD/C/KEN/ CO/1 (30 September 2015) paras 13 and 14(a); CRPD Concluding Observations on Cook Islands para 16(a). 82 See particularly the case of China, paras 13–14. 83 See Lucy Pasha-Robinson, ‘Half of Children with Disabilities do not Feel Comfortable Taking Part in Sport, Study Finds’, The Independent (17 July 2017) where it was found that a major obstacle was social stigma. 84 CRPD Concluding Observations on Thailand para 17. 85 CRPD Concluding Observations on Peru para 16. 86 See Camilla I Ravnbol, ‘Intersectional Discrimination against Children: Discrimination against Romani Children and Anti-Discrimination Measures to Address Child Trafficking’ (UNICEF 2009) 28–29, available at: .
bantekas
Article 7
211
to offer an additional layer of protection to children, who are considered a vulnerable group.87 Other vulnerable group of persons, such as refugees and women in situations of armed conflict, are afforded exceptional rights that are not available to other persons.88 However, besides these two distinct children-related rights, article 7(1) CRPD makes available to children all human rights and fundamental freedoms. This should not be taken for granted and in any event has a twofold dimension. The first encompasses all the rights in the CRPD, some of which are available to all disabled persons generally, while some are available solely, or chiefly, to children, such as article 24 CRPD, which deals with the right to education. The second dimension, however, is even more important. Reference to all rights includes every right, whether exclusive to children or not, that is found in human rights treaties (and customary international law) and which lie outside the text of the CRPD. This observation is significant because even if a state party to the CRPD has not ratified any of these other universal human rights treaties (or refutes the existence of a particular customary right) it is still bound to recognize such rights to disabled children in its territory or under its control by virtue of article 7(1) CRPD. The most significant source of obligations will naturally stem from the Convention on the Rights of the Child, but all other treaties are equally applicable mutatis mutandis. In its examination of article 7 the CRPD Committee has made reference to several other rights in the CRPD and has relied extensively on the concluding observations of the CRC Committee. On many occasions it has reminded states parties of existing obligations under the CRC and specifically called upon states parties to implement concluding observations made by the CRC Committee. To date, the CRPD Committee has not addressed the full range of issues concerning disabled children but has instead focused on several key issues faced by children with disabilities and it is with these that the remainder of paragraph 1 will deal. Readers are directed to the analysis of other CRPD articles in this commentary for an exposition of rights and entitlements, all of which are applicable mutatis mutandis to article 7.
4.3.1 Freedom from Violence Violence against disabled children is endemic in both the developed and developing world.89 This constitutes a fundamental civil and political right that is not subject to a resource constraint or progressive realization (under article 4(2) CRPD), as is also the case with non-discrimination policies against disabled persons and children generally.90 It is addressed in articles 15–17 CRPD in various forms. It is of notable significance in the context of article 7 because much of the violence and abuse against disabled children stems from factors that are absent in the lives of non-disabled children and sometimes even from disabled adults or other vulnerable persons. Chief among these factors is long-term institutionalization, which exposes many disabled children to physical neglect, physical 87 See generally Trevor Buck, International Child Law (3rd edn, Routledge 2014); Aisling Parkes, Children and International Human Rights Law (Routledge 2015). 88 See Ingrid Nifosi-Sutton, The Protection of Vulnerable Groups under International Human Rights Law (Routledge 2017). 89 Karen Hughes et al, ‘Prevalence and Risk of Violence against Children with Disabilities: A Systematic Review and Meta-Analysis of Observational Studies’ (2012) 830 Lancet 899; Nora E Groce, ‘Violence against Children’ (UNICEF 2005), available at: . 90 Purohit and Moor v Gambia, ACHPR Comm No 241/200; Autism Europe v France, European Committee of Social Rights, Complaint No 13/2002 (7 November 2003).
bantekas
212
Children with Disabilities
violence, sexual violence,91 abuse, and trafficking, and abandonment, among others.92 That is precisely why the CRC and CRPD Committees have placed at the top of their agendas the abolition of long-term institutionalization, further demanding that states parties integrate disabled children in their families or the community with sufficient support. These measures will be explored in a dedicated section of this chapter. Violence takes many forms, such as domestic generalized violence in public spaces,93 domestic violence, bullying, corporal punishment, and others. Disabled children have been the subject of heightened domestic violence.94 Such violence may be attributed to various factors, such as the absence of sufficient support to parents with children suffering from psycho-social disabilities, poverty, or others. Some of these factors are reversible (eg effective community-based care and preparation for independent living in order to relieve stressed and over-burdened parents), whereas others are not. Whatever the case, it is clear that states parties are under an obligation to investigate and prosecute family members who exercise violence, both physical and psychological, against disabled children,95 in addition to the support they are obliged to provide. The CRPD Committee has also chastised corporal punishment inflicted on disabled children in care settings and abandoned children.96 Corporal punishment, even as a measure of discipline by parents and teachers, has been held to violate the right to liberty of person,97 and is encompassed within the range of prohibitions prohibited by paragraph 1 of article 7 CRPD. In the case of Panama the CRPD Committee requested that the government repeal the provisions of the ‘Civil Code and the Family Code that empower adults caring for children to “correct” and punish them moderately, recommending further that it draw up legislation that completely prohibits corporal punishment in all settings’.98 The CRPD Committee has, further, commented on bullying, forced hospitalization,99 hate speech and hate crime against disabled children at school and has asked states parties to take appropriate measures.100 In particular, it requested the UK government to set up an 91 CRPD Committee, ‘Concluding Observations on the Initial Report of Lithuania’ UN Doc CRPD/C/ LTU/CO/1 (11 May 2016) para 18(a). 92 See CRC Ctee, General Comment No 9 para 42. 93 CRPD Committee Concluding Observations on Armenia para 12(d). 94 CRPD Committee, ‘Concluding Observations on the Initial Report of Latvia’ UN Doc CRPD/ C/LVA/CO/1 (10 October 2017) para 12(c); Eileen Baldry et al, ‘Domestic Violence and Children with Disabilities: Working Towards Enhancing Social Work Practice’ (2006) 59 Australian Social Work 185. 95 CRPD Committee Concluding Observations on Latvia para 13(b). 96 CRPD Committee, ‘Concluding Observations on the Initial Report of Morocco’ UN Doc CRPD/C/ MAR/CO/1 (25 September 2017) para 17; CRPD Committee, ‘Concluding Observations on the Initial Report of Bosnia and Herzegovina’ UN Doc CRPD/C/BIH/CO/1 (2 May 2017) para 14; CRPD Committee, ‘Concluding Observations on the Initial Report of Ethiopia’ UN Doc CRPD/C/ETH/CO/1 (4 November 2016) para 16; Guatemala para 23. 97 CRPD Committee, ‘Concluding Observations on the Initial Report of Colombia’ UN Doc CRPD/C/ COL/CO/1 (30 September 2016) para 19; see VKV v Russia, ECtHR App No 68059/13 (7 March 2017); Tyrer v UK (1978) 2 EHRR 1; A v UK (1999) 27 EHRR 611. 98 CRPD Committee, ‘Concluding Observations on the Initial Report of Panama’ UN Doc CRPD/C/ PAN/CO/1 (29 September 2017) para 23; equally CRPD Concluding Observations on Guatemala para 24(f ). 99 CRPD Committee, ‘Concluding Observations on the Initial Report of Denmark’ UN Doc CRPD/ C/DNK/CO/1 (30 October 2014) paras 20–21, although this may equally qualify as offending human dignity, liberty of person and other entitlements; see Danish Institute for Human Rights, ‘Human Rights and Compulsory Psychiatric Treatment’ (2013), available at: . 100 CRPD Committee, ‘Concluding Observations on the Initial Report of UK’ UN Doc CRPD/C/GBR/ CO/1 (3 October 2017) para 20.
bantekas
Article 7
213
independent monitoring mechanism to assess the situation of children with disabilities in school, particularly those facing bullying, through reliable indicators.101 Bullying is a persistent problem in the school system (both public and private) in many industrialized nations, but its effect on disabled children is even greater and leads vulnerable children to leave school and into social exclusion and institutionalisation.102 The CRPD Committee has made it clear that disabled children who suffer abuse and violence should be treated as victims, in addition to the obligation of the state to investigate such acts through the criminal103 law. It has, therefore, suggested that victims of violence should be afforded rehabilitation and support, as well as access to civil remedies, such as compensation in tort.104 In addition, there is a real need for awareness training and sensitization for care staff working with disabled children in order to decrease the risk of violence.105
4.3.2 Abandonment There is a prevalence of abandonment of disabled children in most developing countries,106 particularly in rural areas.107 Disabled children living in poverty are more likely to be abandoned by their families.108 In addition to poverty factors, abandonment, no doubt, reflects a deep-rooted cultural dimension and a stigma, including negative stereotyping,109 attached to having disabled children. The CRPD Committee has noted this cultural stance in the high rates of abandonment in rural China and has in turn requested China to: ‘fight the widespread stigma in relation to boys and girls with disabilities and revise their strict family planning policy, so as to combat the root causes for the abandonment of boys and girls with disabilities’.110 It should be remembered that China maintains a one-family one-child policy, which necessarily means that a family with one disabled child is unable to have another child.111 As a result, abandonment may indeed constitute an incentive to have (one day) a non-disabled child. Such an incentive would ibid para 21(c). See Izabela Zych, David P Farrington, Vicente J Llorent, and Maria M Ttofi, Protecting Children against Bullying and its Consequences (Springer 2017); see also David Thompson, Irene Whitney, Peter K Smith, ‘Bullying of Children with Special Needs in Mainstream Schools’ (1994) 9 Support for Learning 103. 103 See equally X and Y v Netherlands (1986) 8 EHRR 235. 104 CRPD Committee, ‘Concluding Observations on the Initial Report of Jordan’ UN Doc CRPD/C/JOR/ CO/1 (15 May 2017) para 18(b). 105 CRPD Committee, ‘Concluding Observations on the Initial Report of Sweden’ UN Doc CRPD/C/ SWE/CO/1 (12 May 2014) paras 15–16. 106 CRPD Committee, ‘Concluding Observations on Morocco’ para 16; CRPD Committee, ‘Concluding Observations on Iran’ para 16(b); CRPD Committee, ‘Concluding Observations on Colombia’ para 18; CRPD Committee, ‘Concluding Observations on Ethiopia’ para 15; CRPD Committee, ‘Concluding Observations on Guatemala’ para 23; CRPD Committee, ‘Concluding Observations on the Initial Report of Croatia’ UN Doc CRPD/C/HRV/CO/1 (15 May 2015) para 11. 107 CRPD Concluding Observations on Mexico para 15; CRPD Concluding Observations on Costa Rica, paras 15–16; CRPD Concluding Observations on Peru para 17. 108 CRPD Committee, ‘Concluding Observations on the Initial Report of El-Salvador’ UN Doc CRPD/C/ SLV/CO/1 (8 October 2013) paras 19–20. 109 CRPD Committee, ‘Concluding Observations on Thailand’ para 18(a). A concrete strategy is required by states facing cultural stereotyping by means of awareness raising, campaigns, and education; equally, CRPD Committee, ‘Concluding Observations on Kenya’ para 13. 110 China, paras 13–14. 111 See Anna High, ‘China’s Orphan Welfare System: Laws, Policies And Filled Gaps’ (2013) 8 University of Pennsylvania East Asia Law Review 126; Nathan Vanderklippe, ‘The Tragic Tale of China’s Orphanages: 98% of Abandoned Children have Disabilities’ The Globe and Mail (21 March 2014), available at: . 101 102
bantekas
214
Children with Disabilities
be seriously curtailed were China to adopt legislation that allows families with a disabled child to have another. To this end, it asked the state party to support parents with disabled children through community-based mechanisms.112 The CRPD Committee has recommended establishing and implementing a strategy against abandonment of children with disabilities and to adopt safeguards to ensure consultation of children with disabilities in all matters affecting them.113 The Committee has called for the establishment of early warning mechanisms in countries were abandonment in rural areas is systematic.114 Given that abandonment can, and usually does, lead to sexual exploitation and trafficking,115 it is crucial that states adopt concrete policies to prevent and stem such practices. The maintenance of accurate data is especially important, as are severe criminal sanctions and the provision of assistance and support to families. A particular form of abandonment, which qualifies also as violence is that of neglect. The CRPD Committee has not elaborated this notion, but in the few instances it has made reference to neglect, it has used the term ‘negligence’,116 further associating it with criminal sanctions. From a comparative perspective, family laws typically assign several duties of care to parents or guardians. Failure to adhere to such duties by way of an omission entails criminal liability, if no other positive act is involved.117
4.3.3 De-Institutionalization The removal of disabled children from institutions is a recurrent theme in the Committee’s concluding observations.118 A study has shown that up to eight million children across the world live in orphanages although more than 90 per cent of these have at least one living parent; disabled children are overwhelmingly represented.119 The type of institutionalization that is repugnant to the CRPD Committee involves long-term care owing to the limited provision of family and community-based services for children of all ages and impairments, as well as for their families.120 Long-term institutionalization, moreover, has been found to contribute to social exclusion, lack of access to mainstream and inclusive education and a high rate of domestic violence,121 as well as sexual abuse, which 112 CRPD Committee, ‘Concluding Observations on the Initial Report of China’ UN Doc CRPD/C/ CHN/CO/1 (15 October 2012) paras 13–14. 113 CRPD Committee, ‘Concluding Observations on Croatia’ para 12; CRPD Committee, ‘Concluding Observations on the Initial Report of Bolivia’ UN Doc CRPD/C/BOL/CO/1 (4 November 2016) paras 17–18. 114 CRPD Committee, ‘Concluding Observations on Kenya’ para 14(a). 115 CRPD Committee, ‘Concluding Observations on the Initial Report of Ukraine’ UN Doc CRPD/C/ UKR/CO/1 (2 October 2015) para 13; see Joan A Reid, ‘Sex Trafficking of Girls with Intellectual Disabilities’ (2016) 30 Sexual Abuse 107. 116 CRPD Committee, ‘Concluding Observations on Jordan’ para 18(a). In other instances, its reference to neglect concerned institutions, but there was no clear association with the parent/guardian’s duty of care; see CRPD Committee, ‘Concluding Observations on the Initial Report of Moldova’ UN Doc CRPD/C/MDA/ CO/1 (18 May 2017) para 16; equally, CRPD Concluding Observations on Ethiopia para 15; in the case of Croatia para 11, the CRPD Committee was concerned with the ‘lack of attention’. 117 See eg Morby (1882) 2 QBD 571, which concerned the failure of a parent to call for medical support for his ailing child. 118 See also CRC Ctee, General Comment No 9, paras 47–50. 119 See Save the Children, ‘Keeping Children out of Harmful Institutions’ (2009) 3. 120 CRPD Committee, ‘Concluding Observations on Latvia’ para 12. 121 ibid paras 12–13; CRPD Committee, ‘Concluding Observations on the Initial Report of Honduras’ UN Doc CRPD/C/HND/CO/1 (4 May 2017) para 17; Concluding Observations on Moldova, paras 16–17; CRPD Committee, ‘Concluding Observations on the Initial Report of EU’ UN Doc CRPD/C/EU/CO/1 (2 October 2015) paras 22–23; CRPD Committee, ‘Concluding Observations on the Initial Report of Belgium’ UN Doc CRPD/C/BEL/CO/1 (28 October 2014) paras 15–16.
bantekas
Article 7
215
usually goes unpunished;122 in some cases it has also been linked to sexual exploitation and trafficking.123 Long-term institutionalization, moreover, renders subsequent independent living and living in the community extremely difficult, if not impossible.124 In many developing states the situation is further hampered by the fact that institutionalization is predicated on a welfare and charity-based approach.125 The CRPD Committee has been particularly concerned with situations of disabled children living away from the family because of high support requirements.126 It is essential in such cases for local and central governments to adopt all possible measures to allow children with high support requirements to live with their families.127 In the case of Montenegro, the Committee made it clear that despite the prohibition against placing children with disabilities ‘under three years of age in institutions, children with disabilities are frequently institutionalized, including in so-called day-care centres, and furthermore, the institutions are divided based on impairment’.128 It, therefore, called on the state party to immediately take measures and allocate all necessary resources to ensure that disabled children have access to all necessary services in the context of community care and not in segregated day-care settings.129 The welfare of children with disabilities should possess a clear statutory dimension so that incumbent public authorities are fully aware of their obligations and are thus able to ensure adequate and disability-sensitive childcare.130 The placing of a disabled child in an institution should be solely a short-term measure and the state should put all available mechanisms in place, including financial resources, to enable the child to live with its family, to be adopted, live in foster care, or otherwise live independently in the community.131 As will be shown elsewhere in this section,
122 See IC v Romania, App No 36934/08 ECtHR judgment (24 May 2016), finding a violation of Art 3 ECHR. The ECtHR held that the investigation of the case had been deficient, notably on account of the Romanian state’s failure to effectively apply the criminal-law system for punishing all forms of rape and sexual abuse. The Court noted in particular that neither the prosecutors nor the judges deciding on the case had taken a context-sensitive approach, failing to take into account the applicant’s young age, her slight intellectual disability, and the fact that the alleged rape, involving three men, had taken place at night in cold weather—all factors which had heightened her vulnerability. 123 CRPD Committee, ‘Concluding Observations on Ukraine’ para 13. 124 CRPD Committee, ‘Concluding Observations on Bolivia’ para 18. 125 CRPD Committee, ‘Concluding Observations on Guatemala’ para 23. 126 CRPD Committee, ‘Concluding Observations on the Initial Report of Luxembourg’ UN Doc CRPD/ C/LUX/CO/1 (10 October 2017) para 16. 127 ibid paras 16–17. 128 CRPD Committee, ‘Concluding Observations on Montenegro’ para 14. In its concluding observations on Armenia para 11(a) the CRPD Committee was concerned with the high number of children with disabilities in orphanages and residential special schools, ‘including their trans-institutionalization from one institution to another under the guise of deinstitutionalization, and the continuing investment in such institutions’. In the case of Serbia, the Committee noted that children with intellectual disabilities constitute nearly 80 per cent of children in institutions and that children with disabilities continue to be placed in institutions. More shockingly, not only were children below three institutionalized, but in many instances disabled children were moved to institutions directly from the maternity ward. CRPD Committee, ‘Concluding Observations on the Initial Report of Serbia’ UN Doc CRPD/C/SRB/CO/1 (21 April 2016) para 13. 129 CRPD Committee, ‘Concluding Observations on Montenegro’ para 15. 130 CRPD Committee, ‘Concluding Observations on UK’ paras 20(d) and 21(d). 131 See CRPD Committee, ‘Concluding Observations on Slovakia’ paras 23 and 24; CRPD Committee, ‘Concluding Observations on the Initial Report of the Czech Republic’ UN Doc CRPD/C/CZE/CO/1 (15 May 2015) paras 15–16.
bantekas
216
Children with Disabilities
de-institutionalization in the sense described is insufficient if it is not supplemented by community-based services and assistance to the disabled child or its family.132 It is clear that, to some degree, certain instances of institutionalization arise from a child’s family situation. Families with few resources will accept any free care setting that allows family members to work and earn a living. It is important, therefore, for states parties to construe their obligations under article 7 CRPD as encompassing an obligation to ‘develop effective quality community-based support services for parents caring for children with disabilities’.133 Strengthening the financial,134 social, and other capacities of children with disabilities and their families is central to tackle long-term institutionalization135 with all its ill-effects.136 It is crucial for states to provide community-based services and support to families, ‘especially households headed by single mothers, in order to ensure the right of children with disabilities to grow up in a family environment and the right to have a family life’.137 In one case, the Committee recommended that the state party introduce a moratorium on admissions to institutions and strengthen its efforts to provide psychological, financial, and social service support measures to families.138 The Committee has identified certain instances of intersectional discrimination, particularly as concerns indigenous disabled children, finding that in countries such as Panama they were more vulnerable as compared to other disabled children.139 In Canada, on the other hand, the Committee was concerned that disabled indigenous children were more likely to end up in welfare services and requested the state party to expedite access to schools, in consultation with the community.140
4.3.4 Right to Life, Survival, and Development Unlike adulthood, childhood is a period of continuous growth from birth to infancy, through preschool age to adolescence. The CRC Committee has emphasized that ‘each phase is significant as important developmental changes occur in terms of physical, psychological, emotional and social development, expectations and norms. The stages of the 132 CRPD Committee, ‘Concluding Observations on Thailand’ para 18(b); CRPD Committee, ‘Concluding Observations on Kenya’ para 14(b). 133 CRPD Committee, ‘Concluding Observations on Montenegro’ para 15; CRPD Committee, ‘Concluding Observations on Iran’ para 17(c). 134 In its Concluding Observations on the UK, and this applies mutatis mutandis to all developed nations, the Committee was concerned with the ‘lack of a policy framework addressing the poverty of many families with children with disabilities’. CRPD Committee, ‘Concluding Observations on the Initial Report of the UK’ para 20(a); poverty is a recurrent issue in the Committee’s observations. See Armenia para 11(b); Cyprus, paras 19 and 20; Guatemala para 24(c); Italy para 18; the same is true as regards austerity measures imposed by the state, in conjunction with its creditors. CRPD Committee, ‘Concluding Observations on the Initial Report of Portugal’ UN Doc CRPD/C/PRT/CO/1 (18 April 2016) paras 19 and 20; equally, CRPD Committee, ‘Concluding Observations on EU’ paras 22 and 23; see UNICEF, Children of Austerity: Impact of the Great Recession on Child Poverty in Rich Countries (OUP 2017). 135 CRPD Committee, ‘Concluding Observations on Panama’ para 21(b); CRPD Committee, ‘Concluding Observations on Lithuania’ paras 19 and 20. 136 CRC Ctee, General Comment No 9 para 41. 137 CRPD Committee, ‘Concluding Observations on Colombia’ para 19; CRPD Committee, ‘Concluding Observations on the Initial Report of Hungary’ UN Doc CRPD/C/HUN/CO/1 (22 October 2012) paras 21–22. 138 CRPD Committee, ‘Concluding Observations on Croatia’ para 12. 139 CRPD Committee, ‘Concluding Observations on Panama’ paras 20 and 23; CRPD Concluding Observations on Guatemala para 23; CRPD Concluding Observations on Mexico, paras 15–16. 140 CRPD Committee, ‘Concluding Observations on Canada’ para 18(c); see Shelly Johnson, ‘Jordan’s Principle and Indigenous Children with Disabilities in Canada; Jurisdiction, Advocacy and Research’ (2015) 14 Journal of Social Work and Disability and Rehabilitation 233.
bantekas
Article 7
217
child’s development are cumulative and each stage has an impact on subsequent phases, influencing its health, potential, risks and opportunities.’141 In the CRPD context this evolutionary development is found in article 3(h) CRPD, which demands respect for the evolving capacities of disabled children. The meaning of ‘survival’ and its link to the right to life are not apparent in article 6 CRC or article 10 CRPD in respect of disabled children. However, if one considers that child mortality is highest for neonatal and adolescents it becomes evident that the survival of disabled and non-disabled infants, at the very least, is inextricably linked to the health of their mother. If the state does not afford mothers the right to the highest standard of health, the chances of survival for the child (disabled or otherwise) will be minimized.142 The development of children is perceived holistically rather than piecemeal. States are obliged to invest in children, not simply as a matter of obligation under the CRC and the CRPD (particularly article 7(1)), but also because their human capital is their most valuable asset. As the United Nations Development Programme’s (UNDP) Human Development Report has emphasized, ‘investments in early childhood education, a focus on employment opportunities for youth and support for older people enhance life capabilities’.143 The United Nations Children’s Fund (UNICEF) applies a particular methodology for measuring children’s wellbeing through indicators. This is known as Multiple Indicator Cluster Surveys (MICS) and it is on the basis of MICS that UNICEF assesses funding and recommends measures.144 It is now well documented that children’s vulnerabilities are exploited by organized crime and predatory behaviour (as is the case with paedophile rings) whose existence was either ignored or conveniently silenced in the past, many times regarded as a taboo topic. Disabled children are more likely to be trafficked as opposed to non-disabled children because of abandonment, long-term institutionalization, and neglect by their families.145 Several measures have been adopted at the international level to combat this scourge.146 Although none of these actions refer specifically to disabled children they are naturally encompassed within its remit. For one thing, the 2002 Optional Protocol to the CRC on the sale of children, child prostitution, and child pornography renders such conduct an extraditable international offence (article 5). Children are the victims of such offences and the Protocol makes it clear that irrespective of taboos and local laws their consent should not render them complicit or provide impunity to the perpetrators. As a result, child victims must be cared for at all phases of investigation/prosecution by the authorities and not be exposed to undue risk or harm (article 8). Articles 1 and 3 of the Protocol oblige states to prohibit and punish (even extraterritorially) the sale of children, child prostitution, and pornography, including also related conduct, such as sale or transfer of organs for profit, forced labour, and illegal adoptions. The right to survival and development in the context of disabled children does not in any way differ from the framework analysed in this section. The CRC’s General Comment No 9 did not devote much space to this issue and only noted that because of the stigma 141 CRC Ctee, General Comment No 15 (2013), ‘On the Right of the Child to the Enjoyment of the Highest Attainable Standard of Health’ UN Doc CRC/C/GC/15 (17 April 2013) para 20. 142 143 ibid para 18. UNDP, Human Development Report (UNDP 2014) 3. 144 Available at: . 145 See CRPD Committee, ‘Concluding Observations on Lithuania’ para 17(a). 146 See Sunil Rao, Trafficking of Children for Sexual Exploitation (OUP 2013); Tom Obokata, Trafficking of Human Beings from a Human Rights Perspective: Towards a Holistic Approach (Martinus Nijhoff 2012).
bantekas
218
Children with Disabilities
carried by having a disabled child, many disabled children, especially in the developing world, were at greater risk of infanticide.147
4.4 ‘on an equal basis with other children’ Article 23 CRC was roundly criticized because it demanded that disabled children ‘achieve the fullest possible social integration and individual development’.148 Although this language is perhaps unfortunate, it is no doubt the result of a combination of poor drafting and poor understanding of disability issues. The CRPD and article 7(1) thereto puts the issue of equality in its proper perspective. Whereas other equality-based phraseology in the various provisions of the CRPD refer to ‘an equal basis with others’, the comparison with ‘children’ rather than ‘others’ in article 7(1) suggests a functional test, whereby the rights enjoyed by non-disabled children should be enjoyed by their disabled counterparts also. How this is to be achieved is up to each state party. It will be recalled that during the seventh session of the Ad Hoc Committee, South Africa and UNICEF emphasized that more was needed in order to ensure that disabled children are empowered to achieve equality with non-disabled children. This type of equality is guaranteed in article 5(1) CRPD and its particular articulation in article 7(1) is simply a reflection of its adaptation to disabled children. In order to achieve this functional objective the state party may have to use extra financial resources or invest in its infrastructure.149 Whatever action the state in question adopts its effect must be that a disabled child enjoys access to a particular right in a manner enjoyed by a child without disabilities. In establishing such equitable conditions for disabled children, states will have to undertake action that defeats existing discriminatory practices, even by means of positive discrimination, in accordance with the general rule in article 5(4) CRPD. Such action, emphasizes the CESCR Committee, should be viewed as a form of permitted positive discrimination.150 In Guberina v Croatia, the father (and sole carer) of a severely disabled child complained to the ECtHR that the Croatian tax authorities failed to take ‘account of the needs of his child when determining his eligibility for tax exemption on the purchase of property adapted to his child’s needs’. The ECtHR acknowledged article 7 CRPD, but as per its usual practice relied on provisions within the ECHR, namely article 14 (discrimination) and article 1 of Protocol 1 to the ECHR (right to property). It found the practice of the tax authorities to constitute discriminatory tax treatment and particularly a disability-based form of discrimination within the scope of article 14 ECHR.151 Quite clearly, an imposition of the same tax on the property of a sole carer of a non-disabled child would not have been unlawful. The impediments on the child, through his carer, to enjoy the rights in the ECHR render the particular tax measure discriminatory. Here, the comparison is made with other non- disabled children. CRC Ctee, General Comment No 9 para 31. See Janet E Lord, ‘Child Rights Trending: Accommodating Children with Disabilities in the Global Human Rights Framework and US Foreign Policy’ (2017) 16 Whittier Journal of Child and Family Advocacy 1. 149 See the Standard Rules on the Equalization of Opportunities for Persons with Disabilities para 15 (hereinafter referred to as the ‘Standard Rules’), adopted in 1993, the purpose of which is to ensure that all persons with disabilities ‘may exercise the same rights and obligations as others’. 150 CESCR, General Comment No 5: Persons with Disabilities UN Doc E/1995/22 (9 December 1994), paras 17–18. 151 Guberina v Croatia [2016] ECHR 287 para 79. 147 148
bantekas
Article 7
219
More importantly, states must collect truthful, accurate and disaggregated data, such that will allow them to identify how and when a disabled child is not afforded the same opportunities in life as other non-disabled children. Without appropriate data equality becomes a random exercise. Moreover, equality requires ascertainment of the root causes which hamper access to opportunities for disabled children.152 The root cause that hampers equal access to opportunities is not always (or only) the child’s disability. For example, a child with a physical impairment is unable to enjoy access to school and recreational activities in equal manner with other children. The provision of transportation and building accessibility (eg ramps, elevators) certainly help, but these may not be the root cause of why a particular disabled child with a physical impairment fails to enjoy the aforementioned rights. An investigation into its particular circumstances may reveal that its parents are poor and would rather spend their meagre earnings on their other non- disabled children, or they may otherwise be wholly unsupportive and not believe in their child’s capacity for sport or education. Hence, even if general accessibility is provided, this particular child will most probably give up at some point. As a result, the three-prong chain of equality is critical, namely: a) accurate, truthful, disaggregated, and personalized data; b) identification of root causes for each disabled child; c) equalization through actions based on (a) and (b).
5. Paragraph 2 5.1 The Child’s ‘best interests’ The foundational principle underlying any decision, judgment, or action (legislative, administrative, or other) concerning children is that it must be in the best interests of the child.153 The application of the ‘best interests’ (or welfare) principle under article 3(2) CRC must take into account ‘the rights and duties [of the child’s] parents, guardians or other individuals legally responsible’. A child’s best interests must be assessed on an individual basis by the courts and administrative authorities and hence pertinent decisions must be reasoned as to their effects and outcomes on the particular child under consideration. The application of this principle in the field of legislative drafting requires that laws reflect the needs of children in a disaggregated fashion.154 For example, there should be different types of protection for children that are refugees, members of indigenous communities, marginalized groups (such as Roma), socially excluded, disabled children, abandoned children, and others.155 The CRC Committee has proposed the introduction of a child rights impact assessment (CRIA) with the aim of assessing whether a policy or
152 Marks identifies two broad types of root causes, namely: human rights violations as a root cause of other regrettable situations (eg of conflict), and situations which may be viewed which are ‘root causes’ of human right violations. She terms the latter ‘the explanatory turn in international human rights’—see Susan Marks, ‘Human Rights and Root Causes’ (2011) 74 Modern Law Review 57, 60–61. 153 See Elaine E Sutherland, Lesley-Anne Barnes Macfarlane (eds), Implementing Article 3 of the United Nations Convention on the Rights of the Child: Best Interests, Welfare and Wellbeing (CUP 2016). 154 CRC Ctee, ‘General Comment No 14 (2013) on the rights of the child to have his or her best interests taken as a primary consideration, UN Doc CRC/C/GC/14 (29 May 2013) paras 10–12. 155 See eg CRC Ctee, ‘General Comment No 11 (2009), Indigenous Children and their Rights under the Convention’ UN Doc CRC/C/GC/11 (12 February 2009) para 5, which notes that indigenous children face discrimination in several fields, particularly access to healthcare and education.
bantekas
220
Children with Disabilities
action ‘which affects children and the enjoyment of their rights and complement ongoing monitoring and evaluation of the impact of measures on children’s rights’.156 A child’s best interests must even supersede an otherwise violation of a peremptory domestic law. In Paradiso and Campanelli v Italy, it transpired that the applicants had been untruthful about a surrogacy in Russia because none had a biological relationship with the child. Given that the nine-month-old child was not the product of a lawful surrogacy it was placed in foster care. The ECtHR held that despite the fact that the applicants had breached Italian and international law regarding inter-country adoption, the removal of a child from its family setting (its provisional foster family) was an extreme measure and could be justified only in the eventuality of immediate danger.157 According to the ECtHR, the best interests of the child comprise two limbs: maintaining family ties (except where the family has proved particularly unfit) and ensuring the child’s development within a sound environment, such as would not harm its health and development.158 The best interests principle is typically found in the body of domestic law known as family law, which includes as a sub-branch the law of juveniles or children’s law—save for juvenile criminal offenders who are dealt with through the criminal law. Each national jurisdiction has developed its own guidelines or criteria, usually on the basis of case law, as to what might broadly be encompassed within this welfare principle.159 Domestic laws do not as a rule specify the contours of the welfare principle because the courts must personalize and adapt it to each individual case,160 but the courts should be able to ascertain best interests criteria that are specific to disabled children.161 Its application is, however, problematic in practice. Some jurisdictions entrust family law-related cases to civil courts (because in civil law jurisdictions family law is part of the body of civil law, alongside contracts, property law, inheritance law and tort law) that do not have expertise in matters related to children. Common law jurisdictions, on the other hand, typically entrust family cases to specialized family courts. A court that is not specialized in children will be unaware of the developments in child psychology162 and in most jurisdictions, for example, courts favour mothers in custody cases on the mistaken assumption that mothers always make better parents as opposed to fathers.163
General Comment 14 para 99. Paradiso and Campanelli v Italy, App no 25358/12 (24 January 2017). 158 See Neulinger and Shuruk v Switzerland, [2010] ECHR 1053 para 136; see also Blokhin v Russia, (2016) ECHR 103 para 191, where it was not in the interests of a twelve-year old boy with a mental and neuro- behavioural disorder to be placed in a temporary detention centre for juvenile offenders. Despite the criminal allegation the disabled child’s best interests were primary (and thus superseded) other considerations under criminal law. The Court further found a violation of the right to a fair trial because the child had been questioned by the police without legal assistance; A M M v Romania, App No 2151/10, ECtHR judgment (14 February 2012). See generally Michael Freeman, Commentary on the UN Convention on the Rights of the Child: Article 3 (Brill 2007). 159 CRC Ctee, General Comment 14 para 32. 160 See also the CRC Ctee’s non-exhaustive and non-hierarchical list of elements, as set out in General Comment 14 paras 52ff. 161 CRPD Committee, ‘Concluding Observations on Canada’ paras 17 and 18(d). 162 See CRC Ctee General Comment 14 paras 94–95, which calls for qualified professionals in all fields related to children. 163 See Ilias Bantekas, ‘Paternal Discrimination in Greek Child Custody Proceedings: Failing the Child’s Best Interests’ (2016) 24 International Journal of Children’s Rights 330. 156 157
bantekas
Article 7
221
Given the fluidity of the ‘best interests’ principle, its application to disabled children should be guided by personalized considerations. Although the CRPD Committee has not yet expressed itself on the matter, the CRC Committee has stated that: The best interests of a child in a specific situation of vulnerability will not be the same as those of all the children in the same vulnerable situation. Authorities and decision-makers need to take into account the different kinds and degrees of vulnerability of each child, as each child is unique and each situation must be assessed according to the child’s uniqueness. An individualized assessment of each child’s history from birth should be carried out, with regular reviews by a multidisciplinary team and recommended reasonable accommodation throughout the child’s development process.164 Adolescents with a psycho-social disorder have the right to be treated and cared for in the community in which he or she lives, to the extent possible. Where hospitalization or placement in a residential institution is necessary, the best interests of the child must be assessed prior to taking a decision and with respect for the child’s views.165
In many cases, under-staffed or poorly trained social services remove disabled children from impoverished parents or conversely remove non-disabled children from impoverished disabled parents. Authorities do so rather than improve the livelihood of the parents and assist them with raising their children. In Saviny v Ukraine, the ECtHR found that the difficult, but not dangerous, condition of seven children living with their two blind and redundant parents did not justify the compulsory removal of the children. The situation could have been addressed by less radical means, such as targeted financial assistance and social counselling.166 One may expand this line of argumentation. Hence, if the removal of a child from disabled parents violates the right to family life of the disabled parent, non-removal must equally be deemed in the child’s best interests. By extension, it must also be also true that the removal of a disabled child from a disabled parent is equally a violation of the right to family life as well as the child’s best interests. The best interests principle in paragraph 2 of article 7 is broader than its counterpart in article 23(2) CRPD. The latter relates to family relationships and legal capacity whereas the former refers to ‘all actions concerning children’.167 Although the travaux do not enlighten us as to the precise meaning of this articulation, if article 7(2) is to distinguish itself from article 23(2) CRPD, then the best interests principle in article 7 must necessarily encompass all policies and actions adopted at state and sub-state level and not just court judgments in the narrow family law sense.168 Under this light, the best interests of disabled children as an identifiable group169 may require such policies and resources that are required to satisfy not only the rights under article 7 and the CRPD as a whole, but also other rights not necessarily found in the CRPD. The implementation of disabled children’s best interests requires policy action (eg adoption of legislation, specialized courts) as well as the provision of resources. Hence, the best interests principle should be viewed as having both a personalized and a general dimension, especially in the case of disabled children. 165 CRC Ctee, General Comment 14 para 76. ibid para 78. Saviny v Ukraine (2008) 51 EHRR 780. 167 In Glass v UK [2004] ECHR 103, the ECtHR held that the decision to impose treatment on a severely disabled child in defiance of his mother’s objections had given rise to an interference with his right to respect for his private life, and in particular his right to physical integrity. This interference, however, was in accordance with the law and the action taken by the hospital staff had pursued a legitimate aim. 168 The same phrase is used in Art 3(1) CRC: The CRC Ctee has construed it to encompass ‘all acts, conduct, proposals, services, procedures and other measures’, CRC Ctee General Comment 14 para 17. 169 See CRC Ctee General Comment 14 para 23, which identifies the best interests principle as both an individual and a group right. 164 166
bantekas
222
Children with Disabilities
Moreover, and this is a third dimension of the best interests principle, is its direct application to entities and institutions other than the courts or the state. Private entities and institutions are not immune from the application of this principle in their dealings with disabled children. Although the CRPD does not confer such an obligation on private entities, states parties to the CRPD are obliged to incorporate such obligation in their domestic laws on the basis of which private entities are obliged to apply the welfare principle. This conclusion is amply reflected in the CRC Committee’s General Comment No 9, where it was stated that: The best interests of the child is of particular relevance in institutions and other facilities that provide services for children with disabilities as they are expected to conform to standards and regulations and should have the safety, protection and care of children as their primary consideration, and this consideration should outweigh any other and under all circumstances, for example, when allocating budgets.170
The CRC Committee has identified in what manner the business community is expected to deal with children’s rights, including the rights of disabled children.171
5.2 Supported Decision-Making It is not clear how article 12 CRPD on legal capacity and the vast literature on universal legal capacity and supported decision-making best applies in the context of disabled children. Unfortunately, the CRC Committee’s General Comment No 9 on the rights of children with disabilities does not even hint at this issue172 and it is clear now that Committee members did not understand its significance. A golden opportunity was equally lost with the CRPD Committee’s General Comment No 3 on women and girls with disabilities that failed to specify the same for girls.173 Legal capacity consists of the capacity to enjoy rights and freedoms under a given legal system (or under international law) and a capacity to enforce those rights or have them enforced against a person. The CRPD Committee’s General Comment No 1 defines legal capacity as including the capacity to be a ‘holder of rights’, entitling ‘the person to full protection of his or her rights by the legal system’, and the capacity to be ‘an actor under law’, recognized ‘as an agent with the power to engage in transactions and in general to create, modify or end legal relationships’.174 The capacity to act and make everyday choices is taken for granted for non-disabled people, but this is not the case with their disabled counterparts who are usually unable to make individual choices, except through some form of substitute decision-making process.175 The universal legal capacity paradigm and its supporters argue that deprivation of legal capacity through systems such as CRC Ctee, General Comment No 9 para 30; equally CRC Ctee, General Comment 14 para 26. CRC Ctee, General comment No 16 on State Obligations regarding the Impact of the Business Sector on Children’s Rights UN Doc CRC/C/GC/16 (17 April 2013). 172 CRC Ctee, ‘General Comment No 9: The Rights of Children with Disabilities’ UN Doc CRC/C/GC/ 9 (27 February 2007). 173 CRPD Committee, ‘General Comment No 3: Women and Girls with Disabilities’ UN Doc CRPD/C/ GC/3 (25 November 2016). 174 ibid para 11. 175 Amita Dhanda, ‘Conversations Between the Proponents of the New Paradigm of Legal Capacity’ (2017) 13 International Journal of Law in Context 87, 91; see generally the commentary to Art 12 CRPD in this volume, upon which much of this analysis rests. It has, however, held that the existence of a mental disorder, even a serious one, could not be the sole reason to justify full incapacitation; see A N v Lithuania, App No 17280/08 ECtHR judgment (31 May 2016). 170 171
bantekas
Article 7
223
guardianship and institutionalization is exclusionary and provides little, or no, benefit to disabled persons.176 Non-adherents, however, disagree, arguing that empirical evidence demonstrates that some interventions have shown to be in the best interests of disabled persons.177 This view is shared also by the ECtHR, which is not, however, composed of disability experts and which does not have a mandate to apply law and principles outside the strict framework of the ECHR. It is not surprising, therefore, that the ECtHR has taken the view that forced medical intervention (of a life-saving character) against the will of a person lacking mental capacity was not unlawful, being part of the positive obligation of states parties.178 Article 12(3) CRPD encapsulates the foundation of the ‘support paradigm’ that pertains to universal legal capacity. The CRPD Committee has adopted the terminology ‘supported decision-making regimes’ to include a wide range of supports for the exercise of legal capacity. In General Comment No 1 the Committee has underlined that ‘ “support” is a broad term that encompasses both informal and formal support arrangements, of varying types and intensity’.179 Examples of supports include universal design and accessibility in banks and financial institutions, forms of supported decision making, ‘the development and recognition of diverse, non-conventional methods of communication’ and advance planning instruments.180 These should be available to all disabled persons and should not be conditional on ‘mental capacity’.181 In addition, a disabled child should be entitled to decide whether or not to use support.182 Supports ‘must respect the rights, will and preferences of persons with disabilities and should never amount to substitute decision-making’.183 The ECtHR has implicitly (relying on articles 5 and 23(2) CRPD and article 8 ECHR) endorsed this point of view by requiring that states shall ‘render appropriate assistance to persons with disabilities in the performance of their child-rearing responsibilities’.184 The CRPD assumes from the outset, because of its outright rejection of the medical model of disability, that the recognition of full legal capacity through, where necessary, supported decision-making is in the child’s best interests. No doubt, there might well be circumstances where the determination of a disabled child’s will and preference is impractical or difficult to ascertain. In such cases, the CRPD Committee is of the view that the ‘best interpretation of will and preferences’ must replace ‘best interests’ determinations’.185 This means that as long as the substitute is not appointed against the person’s will, and as long as he or she adopts decisions affecting the disabled child on the basis of 176 Eilionóir Flynn and Anna Arstein-Kerslake, ‘Legislating Personhood: Realising the Right to Support in Exercising Legal Capacity’ (2014) 10 International Journal of Law in Context 81. 177 Jonathan Herring, Vulnerable Adults and the Law (OUP 2016). 178 Arskaya v Ukraine [2013] ECHR 1235. In some jurisdictions, such as the UK, personal autonomy is a paramount consideration. Hence, if a patient refuses medical treatment that will save their life, doctors acceding to the refusal are not responsible for the resulting death. If a doctor acts without consent he or she is criminally liable; see St George’s Healthcare NHS Trust v S [1999] Fam 26; but see contra Glass v UK [2004] ECHR 103. 179 180 181 General Comment No 1 para 17. ibid para 17. ibid paras 17 and 29. 182 183 ibid paras 19 and 29(g). ibid para 17. 184 Kacper Nowakowski v Poland, App No 32407/13 ECtHR judgment (10 January 2017) para 93. 185 General Comment No 1 para 21; see R P and Others v UK [2012] ECHR 1796 para 75, which concerned the appointment of an Official Solicitor to represent a mother with learning disabilities in a child care proceeding and where a prematurely born child suffered from serious impairments. The ECtHR referred to Arts 5, 12, 13, and 23 CRPD, but not Art 7 and held that it was on the basis of the best interests of the disabled child that the Official Solicitor should determine what form of guardianship was appropriate.
bantekas
224
Children with Disabilities
its ‘best interpretation of will and preferences’ rather than a ‘best interests’ standard, such assistance would not constitute a substituted decision but a supported or facilitated decision.186 The same view has been expressed by the CRC Committee as follows: Where the child wishes to express his or her views and where this right is fulfilled through a representative, the latter’s obligation is to communicate accurately the views of the child. In situations where the child’s views are in conflict with those of his or her representative, a procedure should be established to allow the child to approach an authority to establish a separate representation for the child (e.g. a guardian ad litem), if necessary.187
As opposed to adults, children lack autonomy in the exercise of their rights. The IDC put the issue correctly during the Ad Hoc Committee’s discussions on article 3(f ) CRPD on the evolving capacities of disabled children, as follows: [t]he rights [of children] are granted to their parents who have responsibilities for decision-making in respect of their children. Only gradually, as they acquire capacity, do these rights transfer to them. The principle that children should acquire the right to take responsibility for the exercise of their rights is embodied in article 5 of the CRC. However for children with disabilities, this process of gradual transfer of decision-making responsibility is widely denied. There is too little recognition or willingness to allow them to exercise their rights for themselves. Children and young people with disabilities argue strongly for greater respect for their capacities and the right to independent decision-making.188
It is easy to conflate a child’s limited legal capacity as this is conferred to its parents with removal of legal capacity from a disabled child as a matter of some form of substitute or supported decision-making. The two possess a wholly different rationale and legal nature. The limited legal capacity of non-disabled children includes an additional dimension for disabled children in the form of supported decision-making. Both limited legal capacity and supported decision-making should gradually be removed from disabled children until they reach adulthood.
6. Paragraph 3 6.1 The Child’s ‘right to be heard’ The right of the child to express its views and be heard is predicated on scientific findings according to which children are able to form views, even before developing their ability to express themselves.189 As a result, it is natural, but certainly radical (as a legal entitlement) for children to not only have legal standing in matters that affect them, but also to substantially affect pertinent legal relationships through their personal views.190 Under article 12 CRC children are entitled, but not obliged, to express their views in legal or administrative proceedings (eg custody or adoption) and by implication states are obliged to give due weight to these views.191 Paragraph 3 of article 7 CRPD emphasizes that children have the right ‘to express their views’ and that such views shall be taken into consideration See analysis on Art 12(3) CRPD in this commentary. CRC Ctee, General Comment 14 para 90. 188 Ad Hoc Committee, Seventh Session, ‘Comments, Proposals and Amendments Submitted Electronically’, available at: . 189 CRC Ctee, General Comment No 12 (2009), The Right of the Child to be Heard UN Doc CRC/C/ GC/12 (1 July 2009) para 21. 190 191 ibid paras 32–33. ibid paras 44–45. 186 187
bantekas
Article 7
225
in accordance with the age and maturity of the disabled child. This wording is in contrast to article 12(1) CRC whereby only children that are ‘capable of forming [their] views’ have a right to express these freely and then again subject to their age and maturity. It is therefore quite an achievement that article 7(3) CRPD has removed one of these limitations in the context of disabled children. Effectively, paragraph 3 of article 7 CRPD considers that all disabled children are capable of forming some type or degree of view on matters that affect them, whether directly or through supported decision-making and that such views are to be considered by judicial and administrative authorities. Unlike the CRC, therefore, the CRPD obliges states to always allow a disabled child to be heard. In practice, adults, even disabled adults, are unable of fully sharing and understanding the emotions of disabled children. The available literature that brings such feelings and emotion to light192 should become core reading for those involved with decisions concerning disabled children. As will be demonstrated in a subsequent subsection, the right of a disabled child to always be heard as a substantive and procedural right is distinct from the authority of the entity, judicial or otherwise, before which the child is making a claim, to make a judicial or other determination. The court or other entity deciding a matter affecting a disabled child is not bound by the expressed views of the child. But it cannot ignore its views where its age and maturity are such that failing to take these into consideration would not be in the best interests of the disabled child. This is true, for example, in custody or adoption proceedings. Most states pay lip service to the right of children to be heard. While allowing a child, disabled or otherwise, to be heard, they provide no guarantees that the courts or administrative authorities will actually consider the child’s views. By way of illustration, there may be a failure to engage in a true dialogue with the child over several days or sessions of court proceedings; there may be an absence of in camera proceedings to ensure the sensitivity of the process; the disabled child may not be given the technological or communicative means to converse with the judge; the maturity of the child may be difficult for the judge to assess because of the child’s disability. There are of course many more impediments. It is, therefore, imperative that a secure link be established between the right to have a disabled child’s views heard and the proper contextualization and application of such use. This could be achieved, for example, by requiring reasoned decisions with specific mention as to how the child’s views were considered and ‘respected’193 and why if at all they were rejected. Equally, the decision should explain how the maturity of the child was assessed and the methodology used. This requires a sound and coherent methodological framework that is predicated on scientific criteria and not a random assessment by untrained civil servants or judges. Domestic laws should render decisions not reasoned in the manner explained above as appealable. It comes as no surprise, therefore, that the CRPD Committee has chastised most states parties for failing to consult, or adopt appropriate policies and procedures by which disabled children can be consulted in matters that affect them.194 This is clearly a systemic
See eg Carol Robinson, Kirsten Stalker (eds), Growing Up with Disability (Jessica Kingsley 1998). CRPD Committee, ‘Concluding Observations on Cyprus’ para 22. 194 CRPD Committee, ‘Concluding Observations on Luxembourg’ para 17(b); CRPD Concluding Observations on Montenegro para 15(a); CRPD Committee, ‘Concluding Observations on the Initial Report of the UAE’ UN Doc CRPD/C/ARE/CO/1 (3 October 2016) para 16(b); CRPD Concluding Observations on Sweden paras 19–20. 192 193
bantekas
226
Children with Disabilities
issue that requires concrete legislative action so that the stakeholders are aware how and when they are expected to participate in the relevant processes.
6.1.1 The Collective Right to Be Heard The CRC Committee has made a significant distinction between the individual right to be heard, as analysed above, and the collective right of particular groups (of children) to be heard. The latter is not a collective right, in the sense of self-determination, but a sui generis entitlement that pertains to groups of children sharing common interests (eg marginalized, school children, indigenous, disabled). This group right (which is sometimes referred to as a participation right) arises in situations where a policy or action directly affects a group of children. By way of illustration, the removal of a teacher by the school’s headmaster, the demolition of a playground, the introduction of an educational program for indigenous children are all issues in which the affected children should be allowed to express their views. This is not mere rhetoric but an obligation on all states parties to the CRC.195 The CRC Committee has made it clear that: When the interests of a large number of children are at stake, Government institutions must find ways to hear the views of a representative sample of children and give due consideration to their opinions when planning measures or making legislative decisions which directly or indirectly concern the group, in order to ensure that all categories of children are covered. There are many examples of how to do this, including children’s hearings, children’s parliaments, children- led organizations, children’s unions or other representative bodies, discussions at school, social networking websites, etc.196
In the disability context, disabled children are not effectively represented at national and sub-national decision-making and hence their views on matters that affect them are not heard or taken into consideration. ‘Nothing about us without us’ finds application post-CRPD and also as regards disabled children. The CRPD Committee has expressed concern at the lack of effective representation of children with disabilities in national discourse, especially in the national parliament and congresses, and the lack of opportunity to express their views, especially in matters that concern them. In the case of Morocco, the CRPD Committee recommended the adoption of: a mechanism for conducting effective consultation with children with disabilities through their representative organizations, . . . ensur[ing] the full inclusion of children with disabilities in the national forum of children, the children’s parliament and children’s governorate and municipal councils, on an equal basis with other children.197
What is required, therefore, in order to concretize this ‘collective’ right to be heard is the adoption of regulations and programs at national and sub-national level that ensure, as a matter of entitlement, effective participation, and consultation in decision-making.198 Such regulations must explicitly confer legal standing on representative bodies and ensure
CRC Ctee, General Comment 12 paras 72–73 and 127ff. CRC Ctee, General Comment 14 para 91. 197 CRPD Committee, ‘Concluding Observations on Morocco’ para 19. 198 CRPD Committee, ‘Concluding Observations on Cyprus’ para 22; CRPD Committee, ‘Concluding Observations on the Initial Report of Gabon’ UN Doc CRPD/C/GAB/CO/1 (2 October 2015) para 19, which calls on states to involve disabled children in the drafting of laws that affect them. 195 196
bantekas
Article 7
227
that relevant decisions can only be achieved by a quorum that includes sufficient participation by disabled children’s organizations.199
6.1.2 ‘due weight in accordance with their age and maturity’ Although the view of a child is enhanced by its age and level of maturity, given the contextual character of this entitlement, the level of a child’s maturity is a matter of assessment and can never be presumed;200 otherwise national authorities would render it defunct in practice. Children’s levels of understanding are not uniformly linked to their biological age.201 The Committee on the Rights of the Child has chastised states with a mandatory legislation stating an age at which a child is considered capable of expressing its views, emphasizing that since age and maturity differ from one child to another, the existence of maturity must be assessed on a case-by-case basis irrespective of age.202
6.1.3 ‘disability and age-appropriate assistance’ The CRPD Committee has emphasized the importance of disability and age-appropriate support to ensure the right for disabled children to have their views heard and respected.203 Such assistance must further be accessible.204 This requirement stems from the reference to equality in paragraph 3 but is also consistent with the disabled child’s best interests. While non-disabled children simply require age-appropriate assistance in order to have their views heard, disabled children further require disability-appropriate assistance. In many cases such additional assistance may be no different to that provided to a non-disabled child. For example, in judicial and administrative proceedings a disabled child will not receive a fair trial if not assisted by appropriate legal counsel. Such counsel must be provided by the state in the same manner as for non-disabled children.205 Disability-appropriate assistance is particularly crucial in the context of the right to be heard, as regards children with cognitive and intellectual impairments, as opposed to children with physical impairments.206 The former are unable to vocally express their views and hence they can easily be ignored in processes affecting them. An effective policy should ensure that intellectually impaired children are provided the means, technological or otherwise, to have their views heard by the courts or decision-makers.207 This will require additional resources but the right as such is not resource-constrained.
199 See Anita Franklin, Patricia Sloper, Participation of Disabled Children and Young People in Decision- Making Relating to Social Care (SPRU 2007). 200 201 202 CRC Ctee, General Comment 9 para 20. ibid para 29. ibid paras 21 and 52. 203 CRPD Committee, ‘Concluding Observations on Moldova’ para 17; CRPD Committee, ‘Concluding Observations on the Initial Report of Qatar’ UN Doc CRPD/C/QAT/CO/1 (2 October 2015) para 16; CRPD Committee, ‘Concluding Observations on the Czech Republic’ para 16. 204 CRPD Committee, ‘Concluding Observations on Guatemala’ para 24(e). 205 CRPD Committee, ‘Concluding Observations on Luxembourg’ para 17(b). 206 The CRPD Committee has identified children suffering from specific physical impairments in particular countries as requiring explicit assurances for effective consultation, namely blind and deaf-blind children in Uganda, CRPD Committee, ‘Concluding Observations on the Initial Report of Uganda’ UN Doc CRPD/C/ UGA/CO/1 (12 May 2016) para 13(b). 207 CRPD Committee, ‘Concluding Observations on Lithuania’ paras 17(b) and 18(b).
bantekas
228
Children with Disabilities
The CRPD Committee correctly identifies the supportive function of organisations of parents with children with disabilities at the local level, whether to reinforce the views of the child or for other purposes related to the child’s best interests.208 In many cases, children with disabilities, especially psycho-social and intellectual disabilities cannot express themselves fully absent their support network. Its exclusion, therefore, from pertinent processes is a clear violation of the obligation to provide disability-appropriate assistance.
208 CRPD Committee, ‘Concluding Observations on Bosnia and Herzegovina’ para 15(b); CRPD Committee, ‘Concluding Observations on the EU’ para 25; CRPD Committee, ‘Concluding Observations on Kenya’ para 13(c).
bantekas
Article 8 Awareness-Raising . States Parties undertake to adopt imme1 diate, effective and appropriate measures: (a) To raise awareness throughout society, including at the family level, regarding persons with disabilities, and to foster respect for the rights and dignity of persons with disabilities; (b) To combat stereotypes, prejudices and harmful practices relating to persons with disabilities, including those based on sex and age, in all areas of life; (c) To promote awareness of the capabil ities and contributions of persons with disabilities. 2. Measures to this end include: (a) Initiating and maintaining effective public awareness campaigns designed: (i) To nurture receptiveness to the rights of persons with disabilities;
(ii) To promote positive perceptions and greater social awareness towards persons with disabilities; (iii) To promote recognition of the skills, merits and abilities of persons with disabilities, and of their contributions to the workplace and the labour market; (b) Fostering at all levels of the education system, including in all children from an early age, an attitude of respect for the rights of persons with disabilities; (c) Encouraging all organs of the media to portray persons with disabilities in a manner consistent with the purpose of the present Convention; (d) Promoting awareness-training programmes regarding persons with disabilities and the rights of persons with disabilities.
1. Introduction and Background 2. Travaux Préparatoires 3. Paragraph 1 3.1 Duty ‘to adopt immediate, effective and appropriate measures’ 3.2 Paragraph 1(a) 3.3 Paragraph 1(b) 3.4 Paragraph 1(c) 4. Paragraph 2 4.1 Paragraph 2(a) 4.2 Paragraph 2(b) 4.2.1 Examples of Good Practices
4.3 Paragraph 2(c)
4.3.1 Examples of Good Practices
4.4 Paragraph 2(d)
4.4.1 Examples of Good Practices
230 236 241 244 245 246 249 250 250 253 253 254 255 256 257
Bariffi
230
Awareness-Raising
1. Introduction and Background The system of values, beliefs, traditions, and the social image about disability which is built at individual, community, and media levels sets the groundwork for any possible social change. Most too often, policy makers, stakeholders, persons with disabilities, and society in general tend to believe and/or to assert that the main obstacle in the realization of disability rights is the lack of economic resources and/or the level of development of a given society. But economic resources are generally distributed and allocated under political priorities which in fact are built upon collective values, beliefs, and traditions. The paradigm shift ‘battle’ towards the social model of disability must be given at all levels (political, legal, social, and economic), and using all available resources. But the most difficult barrier in achieving equality and dignity for persons with disabilities, has been, and still is, attitudinal.1 Negative attitudes towards disability have been, and still are, a major barrier in achieving equality and dignity for persons with disability.2 As Shapiro points out ‘like any other emerging minority group, disabled people have become sensitized to depictions of disability in popular culture, religion, and history. There they find constant description of a disabled person’s proper role as either an object of pity or a source of inspiration. These images are internalized by disabled and non-disabled people alike and build social stereotypes, create artificial limitations, and contribute to the discrimination and minority status hated by most disabled people.’3 In specific cultures or within particular social groups, some human differences are valued and desired, and other human differences are devaluated, feared, or stigmatized.4 Goffman affirms that the Greeks ‘originated the term stigma to refer to bodily signs designated to expose something unusual and bad about the moral status of the signifier’.5 Accordingly, this author asserts that ‘the attitudes we normals have towards a person with a stigma and the actions we take in regard to him, are well known, since these responses are what benevolent social action is designed to soften and ameliorate. By definition, of course, we believe the person with a stigma is not quite human. On this assumption we exercise varieties of discrimination, through which we effectively, of often unthinkingly, reduce his life chances.’6 Goffman’s description on the effects of stigma is as simple as accurate. Stigmatization reduces the stigmatized group’s life chances. Stigma crates prejudices. Prejudices influence social perception of the stigmatized group. Social perception impacts on social 1 From the perspective of political science, recent empirical studies show the complexity of determining political outcomes from the traditional theories; eg in the US policy scenario see Martin Gilens and Benjamin I Page, ‘Testing Theories of American Politics: Elites, Interest Groups, and Average Citizens’ (2014) 12 Perspectives on Politics 564–81. 2 The WHO World Report on Disability identifies as one of the most widespread barriers: ‘Negative attitudes: Beliefs and prejudices constitute barriers when health-care workers cannot see past the disability, teachers do not see the value in teaching children with disabilities, employers discriminate against people with disabilities, and family members have low expectations of their relatives with disabilities’ 263; see World Health Organization (WHO), ‘ World Report on Disability’ (2011), available at: . 3 Joseph P Shapiro, No Pity: People with Disabilities Forgoing a New Civil Rights Movement (New York 1993) 30. 4 Lerita M Coleman, ‘Stigma’ in Lenard J Davis (ed), The Disability Studies Reader (Routledge 1997) 216. 5 Erving Goffman, Stigma: Notes on the Management of Spoiled Identity (Simon & Schuster 1963) 1. 6 ibid 5.
Bariffi
Article 8
231
responses, which by definition are critically negative. Negative attitude create social barriers which constitute disguised forms of discrimination. Accordingly, some studies assert that stigma can be seen as an overarching term that contains three elements: problems of knowledge (ignorance), problems of attitudes (prejudice), and problems of behaviour (discrimination).7 Is the context of disability, there is a vast literature dealing with the effects of stigmatization and deeply rooted prejudices in the daily life of persons with disabilities.8 The following quote from Stein, Stein, and Blanck illustrates the grave consequences of stigma, prejudices and discrimination: Prejudicial laws and harmful social conventions regarding people with disabilities have existed since antiquity. These have excluded disabled persons from a wide range of opportunities, including education, employment, marriage, jury participation, parenting, and voting. In extreme, but not uncommon instances, laws provided for lifelong involuntary institutionalization of disabled persons, and for their forced sterilization. Paternalism, alleged public health and safety concerns, and the presumed incompetence of people with disabilities to participate in ordinary social functions were frequently asserted as justification for these legal regimes.9
The experience of disability has been inexorably associated throughout history with the notions of sin or sickness, giving raise to stigma and deep-rooted prejudices.10 As Oliver stresses ‘while it cannot be claimed that there has been much theorizing about disability, it can be argued that almost all studies of disability have a grand theory underpinning them. That grand theory can be characterized as ‘the personal tragedy of disability’.11 Consequently, ‘on the experience of disability, history is largely silent, and when it is discussed at all, it is within the context of the history of medical advances’.12 In this respect, while personal tragedy has dominated historical social perception towards disability, as Silvers et al state ‘traditional democratic morality privileges the perspectives fashioned by familiar ways of functioning, thereby magnifying “normal” bodily and intellectual performances into standards against which the disabled shrink so as to become invisible’.13
7 Graham Thornicroft, Diana Rose, Aliya Kassam, Norman Sartorius, ‘Stigma: Ignorance, Prejudice or Discrimination?’ (2007) 190 The British Journal of Psychiatry 192–93. 8 Paul Hunt, Stigma: The Experience of Disability (1966), Chapman; James I Charlton, Nothing about Us Without Us: Disability Oppression and Empowerment (University of California Press 1998); Irving Kenneth Zola, Missing Pieces: A Chronicle of Living with a Disability (Temple University Press 2004); Lenard J Davis, ‘Introduction: Disability, Normality and Power’, in The Disability Studies Reader, Lenard J Davis (Taylor & Francis 4th edn, 2013) 1–16; Michael L Perlin, The Hidden Prejudice: Mental Disability on Trial (American Psychological Association 2000). 9 Michael Ashley Stein, Penelope J S Stein, and Peter Blanck, ‘Disability’ (2009), in 2 Oxford International Encyclopedia of Legal History 334 (Stanley N Katz et al eds). 10 Colin Barnes, ‘A Legacy of Oppression: A History of Disability in Western Culture’, in Len Barton and Mike Oliver (ed), Disability Studies: Past Present and Future; (The Disability Press 1997) 3–24; Paul Abberley, ‘The Concept of Oppression and the Development of a Social Theory of Disability’ (1987) 2 Disability, Handicap and Society 5–21; Robert Garland The Eye of the Beholder: Deformity and Disability in the Graeco- Roman World (Duckworth 1995); Tom Shakespeare, ‘Cultural Representations of Disabled People: Dustbins for Disavowal’ (1994) 9 Disability and Society 283–301; Colin Barnes and Geof Mercer, Exploring the Divide: Illness and Disability (The Disability Press 1996). 11 12 Michael Oliver, The Politics of Disablement (Macmillan Press 1990) xi. ibid 1. 13 Anita Silvers, David Wasserman, and Mary B Mahowald, Disability, Difference, Discrimination: Perspective on Justice in Bioethics and Public Policy (Rowman & Littlefield Publisher Inc 1998) 2.
Bariffi
232
Awareness-Raising
Consequently, and in order to understand negative perception towards disability it is important to identify how societies have viewed the experience of disability throughout history. Since ancient times, a first model which could be characterized as a model of ‘dispensability’ predominated. Under this model disability was viewed in a purely negative way as a consequence of a divine punishment or curse, and consequently, centring social and legal responses in the elimination of the person, or in the best scenario, in the person’s social segregation or concealment. As Braddock and Parish point out: ‘Ancient Western notions of impairment in Greece and Rome accepted the belief that persons with congenital impairment embodied the wrath of the gods and should be killed.’14 Perhaps the most iconic and brutal example of this model can be found in ancient Spartan social practices where deficient children in any way (frail looking, deformed etc . . .) would be left on the sides of Mount Taygetos to die.15 While infanticide of children with disabilities was widely accepted in ancient times, it did not affect all newborn children with any disability.16 Some children with specific impairments, as well as adults with congenital disabilities, were not subjected to eugenics practices.17 During the Middle Ages, widespread belief in demonology as an etiology of impairments was counterbalanced by religious movements preaching compassion and support towards persons with disabilities.18 For this reason some studies find in this period the origin of the so-called ‘charitable or compassion model’.19 Models are simplified presentations of reality because the pure model can hardly exist.20 The dispensability model can also be found to be characterized as the ‘moral/religion model’,21 and some scholar highlight the evolution from religion to charitable model.22 While charity or compassion embraced more desirable social responses towards persons with disability there is a clear unifying idea underpinning the dispensability model, ie that persons with disability do not have any possibility to be integrated into society. In other words, under this model, persons with disabilities faced two options: death or concealment. As a step forward a second model known as the ‘medical ’ or ‘rehabilitation’ model can be tracked back to somewhere between the seventeenth and eighteenth century. Under this approach disability is not viewed intrinsically in a negative way but as a medical condition or abnormality, and consequently, focusing social and legal responses in the 14 David L Braddock and Susan L Parish, ‘An Institutional History of Disability’, in Gary L Albrecht, Katherine D Seelman, and Michael Bury (eds), Handbook of Disability Studies (Sage Publications 2001) 12. 15 Robert Garland, The Greek Way of Death (2nd edn, Cornell University Press 2001) 82. In fact Garland quotes Plutarch (Lyk 16.1-2) to ‘informs us that the father of every male child had to present his offspring before the council of elders (gerousia) for examination. If it was strong and lusty, he was required to raise it; if it was not, he had to expose it at the foot of Mount Taygetos in the belief that the life of that which nature had not provided with health and strength right at the beginning was of no value either to itself or to the state.’ ibid. 16 C Scheerenberger, A History of Mental Retardation: A Quarter Century of Promise (Paul H Brookes 1987). 17 Henri-Jacques Stiker, A History of Disability (William Sayers and Ann Arbor trs) (The University of Michigan Press 1999). 18 David L Braddock and Susan L Parish, ‘An Institutional History of Disability’ (n 14) 12–13. 19 ibid 18. 20 Patrick Devlieger, Frank R Rusch, David Pfeiffer, ‘Rethinking Disability as Same and Different! Towards a Cultural Model of Disability’ in Rethinking Disability (2003) Apeldoorn Garant 14. 21 ibid 15; George Henderson and Willie V Bryan, Psychosocial Aspects of Disability (Charles C Thomas Publisher 2011) 7. 22 Woodill G and Velche D, ‘From Charity and Exclusion to Emerging Independence: An Introduction to the History of Disabilities’ (1995) Journal on Developmental Disabilities 4(1) 1–11.
Bariffi
Article 8
233
rehabilitation or normalization of the person as a way to achieve social integration.23 Two basic factors explain the emergence of this new approach towards disability. On the one hand, the growing number of war and work injuries creating post-birth disabilities (especially during the First World War), and, on the other hand, the significant transformation of modern medicine through technological development.24 Accordingly, under this model’s rationale, persons with disabilities have two options, ie rehabilitation or institutionalization. Either the person with a disability undergoes a rehabilitation process with the purpose of healing a given pathology,25 or when this is not medically or scientifically possible, the person is institutionalized for adequate care or assistance. However, this double pathway is rather theoretical, as in practice, treatment for rehabilitation, under the medical model, is performed in institutions. Thus, it could be asserted that the medical model basically preaches for institutionalization, allowing only a few to be deinstitutionalized through the means of rehabilitation. For this reason, the medical model expanded institutionalization which until then was basically restricted to mental illness to all areas of disabilities, either as physical rehabilitation centres, special schools for blind or deaf people, custodial asylums, and sheltered workshops.26 The critics to this model came strongly from both advocacy of persons with disabilities and anti-psychiatry movements in the 1960s and the early 1970s to both the rehabilitation and the institutionalization paradigms.27 The criticisms of the rehabilitation paradigm touch on the underlying ideology and not to the so-called rehabilitation process, which is an element of considerable importance in the life of disabled persons.28 Basically, the medical model subjects social integration to the person’s rehabilitation denoting the existence of a disturbing ideology, which Stiker 23 ‘The common misperception of disability conforms to the “medical” model, which views a disabled person’s limitations as inherent, naturally and properly excluding her from participating in mainstream culture. Under this framework, people with disabilities are believed incapable of performing social functions because of medical conditions that impair various major life activities. As a consequence of this notion, disabled persons are either systemically excluded from social opportunity—such as receiving social welfare benefits in lieu of employment—or are accorded limited social participation—such as the case of educating disabled children in separate schools.’ Michael Ashley Stein, ‘Disability Human Rights’ (2007) 95(1) California Law Review 86. 24 Garret Williams, ‘Theorizing Disability’ in Gary L Albrecht, Katherine D Seelman, and Michael Bury (eds), Handbook of Disability Studies (Sage Publications 2001) 125. 25 ‘As described in this model, pathologies and their corresponding impairments ideally are treated with direct medical care interventions, preventive rehabilitation, and restorative rehabilitation as appropriate.’ Gary L Albrecht, The Disability Business: Rehabilitation in America (Sage Publications 1992) 23–25. 26 For a historical evolution of the institutionalization process of persons with disabilities see: David L Braddock and Susan L Parish, ‘An Institutional History of Disability’ (n 14) 19–48. 27 eg Thomas S Szasz, The Myth of Mental Illness: Foundations of a Theory of Personal Conduct (Paladin 1972); Erving Goffman, Asylums: Essays on the Social Situation of Mental Patients and Other Inmates (Anchor Books 1961); Gerben DeJong, The Movement for Independent Living: Origins, Ideology and Implications for Disability Research (East Lansing: Michigan State University Press 1979); Colin Barnes and Geof Mercer, Disability (Cambridge: Polity Press 2003); Colin Barnes, Disabled People in Britain and Discrimination: A Case for Anti-discrimination Legislation (3rd edn, London: Hurst and Company 2000) in association with the British Council of Organizations of Disabled People); Silvers, Wasserman, and Mahowald (n 6). 28 This explains why the CRPD addressed the right to health and the right to habilitation and rehabilitation in different provisions, namely articles 25 and 26 respectively. ‘Toward the end of the negotiations, it was decided to split off (re)habilitation issues and cover those in a stand-alone article, now article 26. However, on the insistence of the World Health Organization (WHO), a number of (re)habilitation-related issues were retained in this provision’ (article 25), Marianne Shulze, Understanding the UN Convention on the Rights of Persons with Disabilities (3rd edn, 2010) 95.
Bariffi
234
Awareness-Raising
metaphorically calls the ‘social ideal of erasure’,29 namely, that with medical treatment— specially with the development of orthopaedics and prosthetics—it is possible to erase the impairment, and consequently, allow the individual to be normalized and integrated into social life. As regards institutionalization, the process triggered by the medical model not only implied a differentiated and segregated approach, but it came together with generalized and widely accepted practices with serious consequences on individual fundamental freedoms, such as forced institutionalization, forced sterilizations, forced medicalization, solitary confinement, or medical and scientific experimentation.30 In contrast to the medical model, disability studies scholars have long argued for an understanding of disability through a ‘social’ model.31 In this model, disability is viewed as part of human diversity allowing the person to have same value and dignity on equality of basis with others, and consequently, focusing social and legal responses in the removal of social barriers through the inclusion of the difference in the design and construction of society. According to this model, individual boundaries are not the fundamental issue, but rather it is the limits of society in rendering appropriate services and adequately ensuring that the needs of the disabled are taken into consideration within the social organization.32 Therefore, unlike the dispensability model in which the origin of disability is religious or moral, or the medical model in which disability is placed in the individual’s defected body or mind, the social model places disability in society, or to be more precise, on the way our post-capitalist societies are designed. The social model ‘shifts away the emphasis from individuals with impairments towards restricting environments or disabling barriers. Hence, disabled people are prevented from securing standard of living comparable to that of non-disabled people by a comprehensive and pervasive system of economic and social barriers increasingly referred as social oppression or institutional discrimination.’33 The social model movement can be traced back to the late 1960s and the beginning of the 1970s both in the United Kingdom and the United States of America, along with the emergence of self-help consumerist groups and the independent living movements.34
H-J Stiker, A History of Disability (n 17) 121. Thomas Szasz, Coercion as Cure: A Critical History of Psychiatry (Transaction Publishers 2007); Thomas Szasz, Liberation by Oppression: A Comparative Study of Slavery and Psychiatry (Transaction Publishers 2002); Arlene S Kanter, The Development of Disability Rights Under International Law: From Charity to Human Rights (Routledge 2015) 127. 31 This framework maintains that the socially engineered environment and the attitudes reflected in its construction play a central role in creating ‘disability’; Michael Ashley Stein, ‘Disability Human Rights’ (2007) 95(1) California Law Review 86. 32 See Colin Barnes, Mike Oliver, and Len Barton (eds), Disability Studies Today (Polity Press 2002); Oliver (n 4); Michael Oliver, Understanding Disability: From Theory to Practice (Palgrave 1996). 33 Colin Barnes, Disabled People in Britain and Discrimination. A case for Anti-discrimination Legislation (3rd edn, London: Hurst and Company, in association with the British Council of Organizations of Disabled People 2000) ix. 34 Michael Oliver, The Politics of Disablement (Macmillan Press 1990) 118–23; Tom Shakespeare, Disability Rights and Wrongs (Routledge 2006) Ch 6; Rannveig Traustadóttir, ‘Disability Studies, the Social Model and Legal Developments’ in Oddný Mjöll Arnardóttir, Gerard Quinn (eds), The UN Convention on the Rights of Persons with Disabilities: European and Scandinavian Perspectives (Martinus Nijhoff Publishers) 3–16; Jane Campbell, Michael Oliver, Disability Politics: Understanding Our Past, Changing Our Future (Routledge 1996) 62–63. 29 30
Bariffi
Article 8
235
The social model of disability has been critically important for the evolution of disability rights in the last decades.35 Probably the most important achievement of this movement was the inclusion of the social perspective on disability in the text of the CRPD. While references to the social model can be identified throughout the treaty provisions, the preamble itself includes a simple definition of the social model of disability, Recognizing that disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others.
Besides legal and political conquests, perhaps the most transcendental impact of the social model was on persons with disabilities themselves. As Irving Zola pointed out ‘we must deal as much with social arrangements as with self-conceptions; one, in fact, reinforces the other’.36 The social model not only allowed persons with disabilities to effectively impact on rights recognition and distributive justice, but it also allow them to dignify their diversity as a key element of self-group identity and pride. Despite the importance of the social model, it should be noted that it has raised some critics. For example for Stein this model encounters two obstacles derived from the fact that it invokes only formal equality theory. First, because it expressly relies on notions of corrective justice, the social model must overcome erroneous but strongly held notions that the world inevitably excludes disabled persons. Second, and of greater significance, because it exclusively concentrates on first-generation rights, the social model is prevented from invoking a full range of second-generation rights.37
Likewise, Tom Shakespeare has emphasized on the need to construct a new approach towards disability, provided that the social model movement, especially the British version, has clearly reached a dead end.38 Also feminist approaches towards disabilities have raised some questions in relation to the fundamental approach of the social model.39 While, these three models can be seen as an evolution in human development, it should be noted that there are still many traces of both the dispensability and medical models in modern social practices.40 For example, two current pressing issues based on contemporary and widespread practices, such as genetic abortive laws,41 or sterilization of women with disabilities,42 are actually ideologically based on the dispensability and the medical models respectively. 35 Michael Ashley Stein, ‘Disability Human Rights’ (2007) 95(1) California Law Review 85–93; Quinn G, and Degener T, ‘Human Rights and Disability: The Current Use and Future Potential of United Nations Human Rights Instruments in the Context of Disability’ UN Doc HR/PUB/02/1 2002. 36 Irving Zola, ‘Helping One Another: A Speculative History of the Self-Help Movement’ Archives of Physical Medicine and Rehabilitation 60, 455. 37 Michael Ashley Stein, ‘Disability Human Rights’ (2007) 95(1) California Law Review 91. 38 Tom Shakespeare, Disability Rights and Wrongs (Routledge 2006) Ch 1. 39 Carol Thomas, Female Forms: Experiencing and Understanding Disability (Open University Press 1999); Jenny Morris, Encounters with Strangers: Feminism and Disability (Women’s Press 1996). 40 This can be easily explained if we acknowledge that from a historical timeline, the dispensability model predominated humanity for over 4,000 years, the medical model for a couple of hundred years, and the social model for less than half a century. 41 Javier Romañach Cabrero, ‘Diversity Ethics and the Impact of Genetic Technologies’ in Gerard Quinn, Aisling de Paor, Peter Blanck (eds), Genetic Discrimination: Transatlantic Perspectives on the Case for a European- level Legal Response (Routledge 2015) 39–51. 42 ‘Sexual and reproductive health and rights of girls and young women with disabilities, Report of the Special Rapporteur on the rights of persons with disabilities’ UN Doc A/72/133 (14 July 2017).
Bariffi
236
Awareness-Raising
Unlike most other provisions in the CRPD, there is no mainstreamed equality approach in article 8. While most CRPD provisions set forth a general duty upon states parties to ensure that persons with disabilities enjoy their human rights on equality of basis with others, article 8 seem to include a series of obligations which are not necessarily associated with the equality standard, and therefore, there is no comparative treatment exercise needed in order to fulfil the obligations set forth in that provision 8.43 Therefore, article 8 CRPD might be included among the few treaty provisions which, in fact, set forth new specific ‘disability rights’.44 At first glance article 8 CRPD might appear as a rather ‘decorative’ provision among many other relevant rights recognition statements. However, a closer look to the rationale and the legal implication lets us understand the importance of this provision in building the groundwork for the paradigm shift. Without social awareness among the list of purposes underlying the CRPD, most of its provisions might end up wholly moot.
2. Travaux Préparatoires The essence of what is enshrined in article 8 CRPD can be traced back to the very initial moment of the treaty’s negotiation process.45 In fact, the working paper submitted by Mexico at the First Session of the Ad Hoc Committee, upon which the first official draft was afterwards outlined, already acknowledged in article 5 that ‘. . . states parties shall promote the changing of stereotypes, socio-cultural patterns, customary practices, or of any other nature which constitute an obstacle for persons with disabilities or their families in the exercise of their rights . . . ’.46 However, during the First Session there was not much debate on substantive issues as the delegations focused their efforts on debating whether a convention would be needed.47 43 The comparative treatment exercise requires states parties to ensure the same level of rights realization to persons with disabilities in comparison to the level which effectively enjoy persons without disabilities. 44 The question whether CRPD enshrines new and specific disability rights is still much debated; see eg Gerard Quinn, ‘The United Nations Convention on the Rights of Persons with Disabilities: Toward a New International Politics of Disability’ (2009–10) 15(1) Texas Journal on Civil Liberties & Civil Rights. 45 Prior to the establishment of the Ad Hoc Committee at the UN the government of Mexico organized in Mexico City an Expert Meeting in order to provide input into the intergovernmental consultation on the convention that would start in New York on 29 July 2002 as requested by General Assembly resolution 56/ 168. The executive summary archives indicate that during the meeting there was a general consensus that ‘the convention should ensure the elimination of barriers as well as the adoption of positive measures for persons with disabilities focusing on both public and private levels’, Report of the Expert Meeting on a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities, Mexico City (11–14 June 2002) UN Doc A/57/212, available at: . 46 Working paper by Mexico, UN Doc A/AC.265/WP 1. Ad Hoc Committee on a Compressive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities (29 July–9 August 2002), available at: . 47 Besides the Mexican proposal only the EU and China submitted a position paper. The EU stated: ‘At this early state in the process, and without prejudice to a debate on general principles of the Ad Hoc Committee, the initial preference of the European Union, with respect to the shape and content of a legal instrument, would be for one containing general principles, mainly including equality and non-discrimination with respect to human rights in the context of disability.’ Ad Hoc Committee for the CRPD, ‘Position Paper by the European Union, UN Doc A/AC265/WP 2 (29 July–9 August 2002); China stated that: ‘the convention should be a programmatic document that provides broad guidance for all countries, advocating the adoption of a positive and practical approach attitude and setting out effective provisions and measures’, Ad Hoc
Bariffi
Article 8
237
The Second Session of the Committee held in June 200348 decided that the establishment of a Working Group with the mandate to elaborate a draft text would be necessary. During this Session core debates occurred during panel discussions on priority themes such as the typology of the convention, the principle of non-discrimination and equality from a disability perspective, and the new and emerging approaches to definitions of disability.49 It was clear that these issues would have a transformative influence on the approach and content of the forthcoming treaty body, including, issues related with awareness-raising. For example when discussing the eventual holistic model of the convention50 the EU indicated that ‘the primary aim of a new thematic convention is to raise awareness and recognition of disability as a human rights issue and to deepen the understanding and observance of UN member states with regard to their existing obligations towards persons with disabilities under international human rights law’,51 and when discussing the principles of equality and non-discrimination also asserted that ‘work to combat and prevent discrimination must be performed through a number of different measures at all levels and in all sectors of society. Such measures should include legislative, social policy programmes as well as awareness-raising measures.’52 Mexico stated that the ultimate objective of a convention was twofold: to achieve universal awareness of the needs of persons with disabilities; and to achieve the full development of persons with disabilities and their inclusion in all spheres of life, with conditions and opportunities equal to those of other people,53 and the Venezuelan delegation submitted a draft proposal text for the convention including an article titled ‘promotion of changes in attitudes’.54 Similarly, the negotiations supporting documents include recommendations from three important expert meetings held prior to the Second Session. The Bangkok recommendations included a reference calling for the inclusion of a provision requiring states Committee for the CRPD, ‘Position Paper by the People’s Republic of China’ UN Doc A/AC265/WP 3 para 10 (29 July–9 August 2002). 48 Second Session, 16 to 27 June 2003; for further details see Report of the Second Session UN Doc A/58/ 118 & Corr 1 (3 July 2003). 49 Chairman’s Summary on Panel Discussions, Annex II, Report of the Second Session UN Doc A/58/ 118 & Corr 1 (3 July 2003). 50 For a specific analysis of this issue see: Michael Ashley Stein, ‘Disability Human Rights’ (2007) 95 California Law Review 75–121. 51 European Union Background Paper 17 June 2003 Panel I, available at: . 52 European Union Background Paper 17 June 2003 Panel II, available at: . 53 Note by the Secretary-General, Views submitted by Governments, intergovernmental organizations and United Nations bodies concerning a comprehensive and integral international convention on the protection and promotion of the rights and dignity of persons with disabilities, A/AC265/2003/4+A/AC265/2003/4/ Corr 1 para 16, available at: . 54 Article 7: Promotion of changes in attitude. States parties shall promote the modification of stereotypes, social and cultural patterns, customary practices and any other type of practices which lead to segregation or discrimination or which prevent persons with disabilities from exercising their rights. To this end, States parties shall: * Adopt measures to raise society’s awareness of the rights and needs of persons with disabilities, including the creation of awareness-raising programmes at all levels of mainstream education; * Encourage the media to project a positive, non-stereotypical image of persons with disabilities and their families; * Develop media campaigns to inform the persons concerned and the general public of existing programmes aimed at improving opportunities for persons with disabilities; * Guarantee the participation of organizations of persons with disabilities in the implementation of these measures. Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities. Draft submitted by the Government of the Bolivarian Republic of Venezuela UN Doc A/AC265/2003/WP1 (2003).
Bariffi
238
Awareness-Raising
parties to promote awareness of the Convention.55 Similarly, the Beirut declaration also included a specific group of recommendations under the heading ‘awareness, the media and networking’.56 Lastly the Quito Seminar, suggested changes and additions on article 5 of the Mexican draft.57 In January 2004 the Working Group held its session and as a result elaborated a first draft text for future discussions.58 This draft text included an article 5, titled ‘Promotion of positive attitudes to persons with disabilities’. The Working Group indicated that this provision traced its origin in article 42 of the Convention on the Rights of the Child (CRC); article 7 of the Convention on the Elimination of Racial Discrimination (CERD) and article 3, 5(a), and 10(c) of the Convention on the Elimination of Discrimination against Women (CEDAW),59 as well as in the following specific disability-related instruments: the Standard Rules on the Equalization of Opportunities for Persons with Disabilities;60 Rule 2 (Awareness-raising) of the World Programme of Action Concerning Disabled Persons.61 Likewise, the records of the summary of discussions at the Working Group62 confirm that the: . . . Text of the new proposed article on the ‘Elimination of Stereotypes and Prejudices’, was introduced by Mexico. Mexico had recognized the need for a more detailed provision on increased awareness 55 Bangkok Recommendations on the Elaboration of a Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities UN Doc A/AC265/ 2003/CRP/10 (2003) para 33 (f ). 56 The declaration listed the following recommendations to governments: ‘(i) Governments are urged to formulate national programmes for raising awareness of the rights and situation of persons with disabilities; (ii) Governments are urged to provide access to information technologies and electronic networks in order to enable persons with disabilities to exercise their rights to work, education and participation in relevant activities at national and international level; (iii) Governments are urged to include pedagogics in general educational curricula in order to raise the awareness of children and youth of disability and persons with disabilities and the purposes of full participation; (iv) Governments are urged to raise awareness, amongst women, children and elderly persons in particular, of medical conditions that can cause disability. Programmes should include advice with respect to health, mental health, social and cultural affairs and recreation; (v) Governments are urged to use specialized technology and the Internet for the purpose of raising awareness, training, education and study, and to enable persons with disabilities to employ such technology; (vi) Governments are urged to raise awareness of disability-related issues in all sectors of the population and to introduce the appropriate terminology for working in the field of persons with disabilities that was proposed in the 1982 World Programme of Action concerning Disabled Persons. Some of the most important of those terms are “prevention”, “rehabilitation”, “equalization of opportunity”, “impairment”, “disability” and “handicap”; (vii) Governments are urged to continue to devote every attention and the necessary resources to action aimed at raising awareness amongst persons with disabilities and their families of the various types of disability and, in particular, mental disability, and to exert additional endeavours in the interests of those who live in remote and impoverished areas. Innovative approaches to awareness raising should be encouraged, including such practices as the “polarization of needs”.’ Beirut Declaration and Recommendations on the elaboration of a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities UN Doc A/AC265/2003/ CRP/12 (2003). 57 The Quito Seminar suggested the following changes (Title should be culture, social consciousness, and the mass media) and additions (Adding: Train social actors; Raise awareness among the principal agents of socialization: family, school; and Promote awareness raising and training of public officials and other social actors about the rights contained in the present convention)—Compilation of proposals for a Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities, available at: (accessed 19 October 2017). 58 Working Group to the Ad Hoc Committee; for further details see Report of the Working Group to the Ad Hoc Committee,UN Doc A/AC265/2004/WG/1 (5–16 January 2004). 59 International human rights conventions and other legal instruments (Draft article 5), Working Group, available at: . 60 61 UNGA Res 48/96, annex (20 December 1993). UNGA Res 37/52 (3 December 1982). 62 Summary of discussions at the Working Group, Vol 3, #7 13 January 2004—Negotiations archives, available at: .
Bariffi
Article 8
239
and the role of other actors with respect to non-discrimination. This article obligates States Parties to adopt ‘immediate and effective measures’ (reflecting language taken from CERD and CEDAW) to implement 3 objectives: 1. to create awareness throughout society regarding disability and PWD; 2. to combat stereotypes and prejudices against PWD; 3. to promote an image of PWD as full and capable members of society sharing the same rights and freedoms in a manner consistent with the purposes of the Convention. The measures include: (a). public awareness campaigning; (b). increasing awareness of children; (c). increasing the participation of PWD . . . .
At the Third Session, in May 2004, government delegations undertook the first reading of the Working Group’s draft text.63 The Summary of discussions in relation to draft article 5 reveals that most delegations supported both the content and the inclusion of a separate provision dealing with the duty of parties to promote positive attitudes towards persons with disabilities.64 Most of the interventions proposed reorganization and small changes in the wording of the text.65 Likewise, discussions at this point also show the concern of delegations in including age and gender-specific approaches, as well as the need to link this provision together with the respective provision on education.66 The Fourth Session concerned draft article 5 and discussions began with suggestions for reviewing the title of the article and changing the language in the chapeau.67 The general view of participating delegations was to support the draft provision but to include
63 Third Session, 24 May to 4 June 2004; for further details see Report of the third session UN Doc A/ AC265/2004/5 (9 June 2004). 64 Third session of the Ad Hoc Committee, Daily summary of discussions related to Article 5. Vol 4 #2 25 May 2004, available at: . 65 eg Uganda supported the inclusion of this article because a negative attitude by society is a major source of discrimination and marginalization of PWD. Japan accepted the article as it is in its entirety, but welcomed positive improvements to the draft. Canada supported article 5 and offered changes of an editorial nature. Argentina affirmed that it was important to foster positive attitudes and that the scope and visibility of the text should be appropriate for this. South Africa expressed concern that the title of article 5 does not allow for promotion of rights which is the cornerstone of Convention, and proposed adding ‘creating and raising awareness’ to the provisions. Mexico stressed the importance of this article, and stated that it should be separate from other articles. European Disability Forum suggested that the title of article 5 be changed to make reference to ‘awareness raising’. ibid. 66 eg the delegation of Trinidad and Tobago argued that this article should raise-awareness on the fact that ‘some families hide their children with disabilities out of shame’; the delegation of South Africa proposed that 5.2(b) be moved to the section on education. It also suggested rephrasing 5.2(b) to read, ‘develop and maintain programs on awareness’ that would allow a focus on children who can be very cruel, especially in interactions with children with disabilities; the international NGO Save the children stressed the importance of this article for children and young people. They emphasized the intrinsic value and contribution of all children and adults with disabilities, irrespective of their ability to socialize and their level of self-reliance, and suggested adding ‘including children’ to the text of 5.2(d), to be inserted after ‘PWD’. ibid. 67 eg New Zealand highlighted the barriers posed by society’s knowledge, attitudes and related behaviors and the need to address these issues in a separate provision; The Republic of Korea cautioned against paternalistic language like ‘help’ or ‘assist’; Costa Rica proposed inclusion of a provision on promoting awareness of the convention; a concept not yet included in the WG draft, Australia outlined the three messages emerging from this article: 1. raising awareness in all aspects of society about disability and PWD, their rights, potential and contributions to society; 2. to promote the capabilities and contributions of PWD and reinforce their positions as equal members of society; 3. to combat negative stereotypes or negative practices and prejudices. It is possible within these 3 elements to construct an article that would pick up all the desired elements in current article 5; see: Daily summary of discussions, Morning Session Vol 5 #3 25 August 2004; Fourth Session of the Ad Hoc Committee, 23 August to 3 September 2004—Negotiations archives, available at: .
Bariffi
240
Awareness-Raising
much stronger and social model-based language.68 In fact, civil society interventions highlighted the danger inherent in drafting such an article and the need to avoid patronizing language.69 The Fifth Session, which was held in January 2005, led to a reduction in the ambit of the draft convention and consequently did not address the debate in relation to draft article 5.70 At the Sixth Session held in August 2005 the chairing of the Ad Hoc Committee was taken over by Ambassador Don MacKay from New Zealand. Informal meetings were held during this session, as they had been in previous sessions, in order to consolidate a new, shorter working draft text.71 At the end of the meeting Ambassador MacKay announced that he would submit to the delegations a new draft text containing all the suggested modifications up to date. The document called ‘Chair’s text’ was delivered to state delegations and NGOs in October 2005.72 The Chair’s text included the reallocation of draft article 5 to draft article 8, a new title and new wording which, with very small changes, ultimately became the final version of what is now article 8. The Chair’s proposal read as follows: . . . Article 8. Raising awareness regarding disability 1. States Parties undertake to adopt immediate and effective measures: (a) To raise awareness throughout society regarding disability and persons with disabilities, and to foster respect for their rights;
68 eg the delegation of Chile supported Mexico’s proposed new title for this article ‘Creation of a culture of respect and inclusion’; Cameroon (on behalf of the Africa Group) recommended the following alternative title for article 5: ‘Promotion of Positive Attitudes Towards Persons with Disabilities, Creation and Raising of Awareness’; India supported the Australian proposal to amend the chapeau to ‘appropriate and effective measures’; Chile supported the title proposed by Mexico, as it is more encompassing to refer to ‘culture,’ which would include both positive aspects and awareness raising; Australia, Cameroon (on behalf of the African Group), Mexico and Serbia-Montenegro also supported the compromise proposal for the chapeau as suggested by the Facilitator, which he read out as follows: ‘States Parties undertake to adopt immediate, appropriate and effective measures to:’ noting that ‘effective’ applies to the previous two terms. The EU specifically and the Committee generally agreed to this language, which was adopted. ibid. 69 eg EDF (on behalf of the International Disability Caucus) highlighted the danger inherent in drafting this article and the need to avoid patronizing language. In this regard it supports the proposals of EU and others to reference the fostering of respect for PWD. It supports retaining the language in 1(b) and avoiding the use of the term ‘negative’ stereotypes because positive stereotypes must also be avoided (ie blind people have perfect memory, deaf people have high levels of concentration, people with Downs syndrome are nice). In 5(1)(c) it opposes the proposed wording by Thailand for 5(1)(c), but sees merit in that of the Philippines. It rejects the proposal to reference ‘families’ in 5(2)(d), while noting that families are a target group for awareness raising campaigns; DPI emphasized the importance of awareness-raising as a pre-condition for the equalization of opportunities for PWD, appearing at the beginning of the UN Standard Rules, and of working in partnership with PWD in awareness raising as stated in 5(2)(d). The concepts of partnership and participation do merit mention in this article though they appear elsewhere in the convention text. If there are to be any principles that can and should appear in specific contexts throughout the convention, it is these. ibid. 70 During its fifth session, the Ad Hoc Committee conducted informal discussions on articles 7 (para 5) to 15 of the draft convention and proposed additional articles in accordance with the programme of work adopted at its first meeting. See Report of the fifth session UN Doc A/AC265/2005/2 (23 February 2005). 71 During the sixth session, just like in the previous one, article 5 was not directly addressed as the Committee only conducted informal discussions on articles 15, 24bis, 15bis, and 16 through 25 of the draft convention. See Report of the sixth session UN Doc A/60/266 (17 August 2005). However, the facilitator submitted a new draft version of article 5 with slight changes from the WG draft text. For further details see Revisions and amendments at the Sixth Session of the Ad Hoc Committee, available at: . 72 Letter dated 7 October 2005 from the Chairman to all members of the Committee UN Doc A/AC265/ 2006/1 (14 October 2005).
Bariffi
Article 8
241
( b) To combat stereotypes and prejudices about persons with disabilities in all areas of life; (c) To promote awareness of the capabilities and contributions of persons with disabilities. 2. Measures to this end include: (a) Initiating and maintaining effective public awareness campaigns designed: (i) To nurture receptiveness to the rights of persons with disabilities; (ii) To change negative perceptions and social prejudices towards persons with disabilities in all matters of [sexuality,] marriage, parenthood and family relations of persons with disabilities; (iii) To promote recognition of the skills, merits, abilities and contributions of persons with disabilities to the workplace and the labour market; (b) Fostering at all levels of the education system, including in all children from an early age, an attitude of respect for the rights of persons with disabilities; (c) Encouraging all organs of the media to portray persons with disabilities in a manner consistent with the purpose of the present Convention; (d) Promoting disability-sensitive awareness training programmes . . .
The Seventh Session of the Ad Hoc Committee was held in January 200673 and a first reading of the Chair’s text was completed. Discussions during this session focused largely in two issues. On the one hand, some delegations suggested the deletion of article 8 but this turned out to be a quite minority view,74 and on the other hand, several delegations manifested their rejection to the inclusion of the word ‘sexuality’ on paragraph 2(a)(ii).75 This resulted in a revised version of the Chair’s text being adopted by the Committee as its ‘Working Text’, with few amendments in relation to the Chair’s draft article 8.76 During the Eight and final Session, the Ad Hoc Committee simply included minimal changes to draft article 8, such as the incorporation of a reference to the family in paragraph 1(a), or replacing ‘sex’ for ‘gender’ in paragraph 1(b) in order to make it compatible with language in the International Covenant on Civil and Political Rights (ICCPR) and other international human rights instruments.77
3. Paragraph 1 As the CRPD Committee’s reporting guidelines indicate in relation to article 8, this provision ‘ . . . establishes the obligation of states parties to conduct effective awareness raising policies to promote a positive image of persons with disabilities . . .’.78 Article 8 follows the general structure of most provision in the CRPD that entail obligations upon member states. On the one hand, paragraph 1 outlines the general content of the 73 Seventh Session, 16 January to 3 February 2006. For further details see Report of seventh session UN Doc A/AC265/2006/2 (13 February 2006). 74 eg Korea suggested that article 8 was unnecessary as rights cannot be guaranteed by raising public awareness. Against this view Chile stated that raising awareness is a key aspect of promoting the rights of PWD, and New Zealand strongly supported retention of the article. The IDC opposed Korea’s proposal but agreed that the article should be written so that it does not become outdated over time; see Daily summary of discussion at the seventh session, 16 January 2006 Vol 8 #1, available at: . 75 ibid. 76 Article 8 Awareness raising, available at: . 77 Revisions and Amendments at the Eighth Session of the Ad Hoc Committee—Negotiations Archives, available at: 78 Guidelines on treaty-specific document to be submitted by states parties under article 35, paragraph 1 of the Convention on the Rights of Persons with Disabilities UN Doc CRPD/C/2/3 (18 November 2009).
Bariffi
242
Awareness-Raising
international obligation, which is broken down into three different levels, namely, the duty to raise awareness (paragraph 1.a); the duty to combat stereotypes, prejudices and harmful practices (paragraph 1.b); and the duty to promote awareness of the capabilities and contributions of persons with disabilities (paragraph 1.c). On the other hand, paragraph 2 outlines a series of measures which may be taken by states parties in order to implement the obligations set forth in paragraph 1. The analysis of reports submitted by states parties to the CRPD before the Committee shows a clear trend, namely, that there are no general, nor mainstreamed, policies effectively implemented at domestic level, but rather isolated and disconnected initiatives or actions to raise social awareness as provided by article 8.79 Besides this regretful panorama, some examples of governmental good practices can be identified. The ‘See the True Me’ campaign was implemented in Singapore in 2016 to encourage the public to see persons with disabilities for who they are, instead of the disability they have.80 Organized by the NCSS (the National Council of Social Services) the campaign aims to: a) Celebrate the strengths and abilities of persons with disabilities; b) Educate the public on communication tips and support strategies for persons with disabilities; and c) Encourage the inclusion of persons with disabilities in society. The campaign positions persons with disabilities as individuals with abilities and passions relatable to you and me, shifting the narrative to one that is enlightening and empowering.81 ‘Like Minds, Like Mine’ is a New Zealand public awareness programme to increase social inclusion and end discrimination towards people with experience of mental illness or distress through public awareness campaigns, community projects, and research.82 The programme is underpinned by the social model of disability and the power of contact, and it takes a human rights approach to disabilities. The 2014–19 Like Minds, Like Mine
79 It should be noted that most states parties report a whole range of initiatives dealing with awareness- raising, yet most of these initiatives, are designed and executed by private entities with public funding. They focus on specific topics, issues or areas, and are generally implemented once a year when it comes to celebrate the international day for persons with disabilities. Likewise, most states parties report under article 8 specific initiatives such as seminars, workshops, which clearly contribute to raise awareness but are not technically policies as required by the CRPD. Lastly, some states parties report and acknowledge that even under domestic law they are obliged to implement awareness-raising campaigns, and yet they don’t report any existing comprehensive and permanent government policy to comply with this legal duty (eg China, Japan). In turn, some states parties have reported the adoption of specific campaigns with the particularity of being focused on specific topics such as accessibility, equality of opportunities, employment, or institutionalization (eg Germany, Brazil, Canada). The survey included the following states parties initial reports: from Europe: France UN Doc CRPD/C/FRA/1 (16 October 2017); Germany UN Doc CRPD/C/DEU/1 (7 May 2013); Spain UN Doc CRPD/C/ESP/1 (5 October 2010); Sweden UN Doc CRPD/C/SWE/1, 18 September 2012; United Kingdom UN Doc CRPD/C/GBR/1 (3 July 2013); from the Americas: Argentina UN Doc CRPD/C/ARG/1 (28 June 2011); Brazil UN Doc CRPD/C/BRA/1 (14 July 2014); Canada UN Doc CRPD/C/CAN/1, 7 July 2015; Colombia UN Doc CRPD/C/COL/1 (14 July 2015); in Africa: Ethiopia UN Doc CRPD/C/ETH/1 (19 March 2015); Kenya UN Doc CRPD/C/KEN/1 (28 July 2014); Morocco UN Doc CRPD/C/MAR/1 (9 September 2015); in Asia: China UN Doc CRPD/C/CHN/1 (8 February 2011); India UN Doc CRPD/C/ IND/1 (6 October 2017); Japan UN Doc CRPD/C/JPN/1 (4 October 2017); New Zealand UN Doc CRPD/ C/NZL/1 (1 October 2013); Qatar UN Doc CRPD/C/QAT/1 (9 July 2014). 80 Available at: . 81 The campaign includes, inter alia, training activities, videos to promote positive perception towards persons with disabilities, and information on how to interact with persons with disabilities in the following areas: i) 6 Golden Rules; ii) Physical Disability; iii) Hearing Impairment; iv) Visual Impairment; v) Autism Spectrum Disorder; and vi) Intellectual Disability. Likewise, the campaign includes valuable resources for: i) Business Owners and Co-workers; ii) Educators and Students; and iii) Caregivers and Persons with Disabilities. ibid. 82 Available at: .
Bariffi
Article 8
243
National Plan focuses its efforts in three core areas, namely, workplaces, media, and community.83 The programme also includes public awareness campaigns videos.84 The Badhte Kadam85 (Awareness, Community Interaction, and Innovative Project) in India, aims at community awareness, sensitisation, social integration, and mainstreaming of persons with disabilities under the following objectives: 1) Raise awareness in the public, regarding person with disability and encourage their inclusion in the society, social integration, and participation of persons with disabilities in all aspects of life; 2) Disseminate information on preventive strategies for the disabilities; 3) Sensitize community stakeholders; 4) Publicize and maximize benefits of the National Trust schemes for registered organization and families; 5) Increase representation in remote areas and in areas where the National Trust is under represented; and 6) Spread awareness about myths and misconceptions about disability, disability etiquette etc.86 At the EU level, the Disability Strategy 2010–20 adopted in 2010, acknowledged awareness-raising as one the fundamental instruments to underpin the actions within the eight priority areas.87 The Strategy defines the purpose of awareness-raising as follows: Raise society’s awareness of disability issues and foster greater knowledge among people with disabilities of their rights and how to exercise them.
The Strategy’s Progress Report published in February 2017 lists a series of initiatives implemented at community level, namely: i) regularly publicizing information relevant to the rights of persons with disabilities and on antidiscrimination through various channels such as the EUROPA website, social media, press releases, communication campaigns, and videos; ii) targeted awareness-raising campaigns, such as, the annual Access City Award, launched in 2011, the European Year 2012 for Active Ageing, or the 2016 award to the best accessible airport; iii) key disability public awareness events, such as, the European Day of Persons with Disabilities conference or the annual Work Forum.88 Within the context of the Council of Europe (COE), a recent Disability Strategy was adopted for the period of 2017–23, with the overall goal to achieve equality, dignity, and equal opportunities for persons with disabilities in specific areas where the COE can make an input.89 To achieve this goal the Strategy adopts five strategic areas, being the second one specifically on awareness-raising.90 In this context, the COE commissioned 83 Ministry of Health and Health Promotion Agency, New Zealand, Like Minds, Like Mine National Plan 2014–2019: Programme to Increase Social Inclusion and Reduce Stigma and Discrimination for People with Experience of Mental Illness (Ministry of Health 2014) 13, available at: . 84 See eg YouTube Channel: . 85 Available at: . 86 Ministry of Social Justice & Empowerment, Govt. of India, The National Trust, Scheme Guidelines, Badhte Kadam, Awareness & Community Interaction Awareness & Community Interaction. Department of Empowerment of Persons with Disabilities, available at: . 87 European Commission, European Disability Strategy 2010–2020: A Renewed Commitment to a Barrier- Free Europe COM(2010) 636 final 9 (15 November 2010). 88 European Commission, Progress Report on the Implementation of the European Disability Strategy (2010– 2020) SWD (2017) 29 final 15–16 (2 February 2017). 89 Council of Europe, Disability Strategy 2017-2023 (30 November 2016), 5, available at: . 90 To achieve the purposes of the Strategy in the field of awareness-raising, the documents calls for member states and other relevant stakeholders to: a) Undertake public awareness raising initiatives and human
Bariffi
244
Awareness-Raising
a study to suggest current and useful good practices to policymakers and practitioners in the area of raising awareness and sensitizing a wide range of stakeholders.91 The core of this study identifies successful examples of awareness raising via policy and practice.92 While governmental commitment to conduct effective awareness raising policies to promote a positive image of persons with disabilities is scarce and generally misguided by the prevalence of the medical model of disability, there are several initiatives originated within DPOs which may shed some light into the effective implementation of article 8. These initiatives will be addressed hereon under the analysis of the various segments of article 8.
3.1 Duty ‘to adopt immediate, effective and appropriate measures’ The chapeau in paragraph 1 begins by settling the legal nature of the overall obligation enshrined on article 8. From a practical perspective, the analysis on the legal nature of article 8 seems relevant to the question as to whether the obligations set forth in that provision are of a ‘direct’ or ‘indirect’ nature. The negotiation records show that during the debates some delegations considered the promotion of positive attitudes towards persons with disabilities as part of states’ general obligations, and therefore, to be included in article 4.93 But negotiations also reveal that most delegations strongly supported the inclusion of a separate provision to deal with this issue and the main reason was to avoid the progressive realization threshold included in paragraph 2 of article 4.94 The evolution from draft article 5 during the First Session of the Ad Hoc Committee to the final text of article 8 is quite revealing in this respect. The direct effect of international human rights obligations raises profound questions in the field of the separation of powers, which most too often, is confronted with the question of domestic incorporation of international law.95 In this respect, and without rights-based training programmes on the equal rights, positive perception, and capabilities of persons with disabilities in all areas of life, especially with regard to education and labour market, taking into account diversity and a gender equality perspective; b) Develop information campaigns to change legislation and combat negative attitudes, stereotypes, and practices to make discrimination of persons with disabilities both illegal and unacceptable. The use of targeted statistics as a critical campaign information tool is encouraged. These information campaigns will be relayed, in addition to the public at large, to national parliaments and local and regional authorities and to the Parliamentary Assembly and the Congress of Local and Regional Authorities; c) Ensure close co-operation with and active participation of the representative organizations of persons with disabilities and their families, the National Human Rights Institutions, Equality Bodies, and Ombudsman Institutions and their respective networks and other relevant mainstream stakeholders to benefit from their experience and expertise with regard to human rights and lived experience of persons with disabilities; d) Promote respect, equality, capabilities, and active participation, involvement, and inclusion of persons with disabilities in the media, entertainment, and cultural life as both active actors and users; e) Identify, collect, and disseminate good practices with regard to awareness raising. ibid 20. 91 Katrijn Dekoninck, ‘Awareness Raising on the Rights of Persons with Disabilities Contribution to the Council of Europe Strategy on the Rights of Persons with Disabilities’, (June 2017), available at: . 92 ibid 22–36. 93 This was the clear position of the EU at the beginning of the negotiation process. eg at the Third Session Ireland/EU proposed that article 5 be amalgamated with article 4, and that the chapeau of article 5 would not be needed, as it would be covered in the previous chapeau in the combined article. See Third Session of the Ad Hoc Committee, Daily Summary of Discussions Related to Article 5, available at: . 94 Francisco Bariffi, El Régimen Jurídico Internacional de la Capacidad Jurídica de las Personas con Discapacidad (Ediciones Cinca 2014) 158–60. 95 María Magdalena Sepúlveda, The Nature of the Obligations Under the International Covenant on Economic, Social and Cultural Rights (Intersentia 2003) 157–247; Frederic Megret, The Nature of International Human
Bariffi
Article 8
245
prejudice to the still active debate in relation to article 4(2),96 the chapeau of article 8 asserts that ‘. . . states parties undertake to adopt immediate, effective and appropriate measures . . .’, leaving little room for interpretation about the nature of the obligation included therein. No other provision in the CRPD uses the word ‘immediate’ when it comes to outline the nature of the obligation set forth therein. In turn, article 8 not only indicates that the measures to be taken must be immediate but also effective and appropriate. This could explain why the CRPD Committee has included Concluding Observations related to article 8 CRPD in nearly all states parties’ initial reports.97 Accordingly, from the legal nature of the obligation enshrined in article 8 CRPD it becomes evident that this provision entails some degree of ‘action’ through the adoption of ‘positive’ measures.
3.2 Paragraph 1(a) Article 8, paragraph 1(a) sets forth the obligation upon states parties ‘. . . to raise awareness throughout society, including at the family level, regarding persons with disabilities, and to foster respect for the rights and dignity of persons with disabilities . . . ’. The required action is ‘to raise awareness’. The Oxford English Dictionary defines this entry as ‘knowledge or perception of a situation or fact’.98 Therefore, the question that follows is who must be acknowledged and in relation to what situation or fact? As regards the former, the CRPD indicates that the primary target is society as a whole (‘throughout society’), but goes on to emphasize that this includes the family level. This particular reference is neither redundant nor reiterative if we take into account that quite often the prime focus of ‘invisibility’ comes from the family group itself. While the reference to the family was suggested at the beginning by the civil society,99 it was not until the last session that it was included pursuant proposal of several states.100 As for the latter, the CRPD’s negotiating debates fluctuated throughout the negotiation process. It was not clear since the beginning where awareness-raising should be focused or directed. For some it was the person, for others the objective was the person’s rights and yet for others the focus should
Rights Obligations (11 September 2009), available at: or ; David Sloss, ‘The Domestication of International Human Rights: Non-Self- Executing Declarations and Human Rights Treaties’ (1999) 24 Yale J Int’l L; CESCR, ‘General Comment 9, The domestic application of the Covenant’ UN Doc E/C 12/1998/24 (1998). 96 Gerard Quinn, The United Nations Convention on the Rights of Persons with Disabilities (n 14) 41–46; Amita Dhanda, ‘Constructing a New Human Rights Lexicom: Convention on the Rights of Persons with Disabilities’ (2008) 8 SUR—International Journal on Human Rights 55. 97 The extensive list of Concluding Observations reveals that article 8 CRPD has been a matter of concern for the Committee. eg article 8 CRPD has been a matter of observation in nearly forty cases while in other seven cases in which the Committee decided not reference directly this provision. 98 Available at: . 99 eg during the Third Session the European Disability Forum proposed a paragraph on families, while recognizing that families can play both positive and negative roles in the lives of PWD; see Third session of the Ad Hoc Committee, Daily Summary of Discussions Related to Article 5 Vol 4 #2 (25 May 2004), available at: . 100 The inclusion of this reference was agreed during the last session of the AD HOC Committee by a group of Islamic delegations. The delegation of Bangladesh indicated that ‘Considering that the family is the key and most influential social institution, it is recommended to incorporate the Family too in awareness-raising activities.’ This was supported by the African Group, Egypt, Morocco, Sudan, and Syria—see Compilation of Government proposed changes, by article Wednesday 23 August 2006, available at: .
Bariffi
246
Awareness-Raising
have been on the disabling barriers.101 It could be argued, in this respect, that we can indeed find all of the three perspectives throughout the text of article 8. A good example of the multi-perspective approach of article 8 can be seen in the CRPD Committee’s concluding observations on Austria where it . . . notes with concern that there appear to be very few awareness-raising campaigns conducted in Austria to counter negative and outdated stereotypes about persons with disabilities which foment discrimination. The Committee is concerned that throughout Austrian society there does not appear to be a complete understanding of the paradigm shift created by the human rights-centred approach in the Convention. The Committee is also concerned at reports that persons with disabilities face practical obstacles in matters of adoption and that that attitude is partly attributable to persisting prejudices and stereotypes against persons with disabilities . . .102
Similarly, in General Comment No 2, which concerns accessibility, the Committee acknowledges that awareness-raising is one of the preconditions for the effective implementation of the CRPD, and therefore states parties should strive systematically and continuously to raise awareness about accessibility among all relevant stakeholders.103 The Committee also recognizes that the lack of accessibility is often the result of insufficient awareness and technical know-how104 and that in order to introduce policies that allow better accessibility for persons with disabilities, it is necessary to change attitudes towards persons with disabilities in order to fight against stigma and discrimination, through ongoing education efforts, awareness-raising, cultural campaigns, and communication.105 Finally, the Committee reminds that awareness-raising should be carried out in cooperation with persons with disabilities, their representative organizations and technical experts.106
3.3 Paragraph 1(b) Article 8, paragraph 1(b) sets forth the obligation upon states parties ‘. . . to combat stereotypes, prejudices and harmful practices relating to persons with disabilities, including those based on sex and age, in all areas of life . . .’. While this obligation is implicitly included in the general obligation set forth in paragraph 1(a), the text of the CRPD clearly intended to highlight the deeply rooted systematic discrimination towards persons with disability, which usually hides behind general stereotypes, prejudices, and harmful practices.107 While paragraph 1(b) focuses on fostering the positive perception of
101 A good example of this multiple focus of article 8 is evident on the different variations of the article’s title. The WG draft article 5 used the title ‘Promotion of positive attitudes to persons with disabilities’. During the Third Session South Africa expressed concern that the title of article 5 does not allow for promotion of rights which is the cornerstone of Convention, and proposed adding ‘creating and raising awareness’ to the provisions. Mexico suggested to change the title to: ‘Creation of a culture of respect and inclusion’. During the Fourth Session, Cameroon (on behalf of the Africa Group) recommended the following alternative title for article 5: ‘Promotion of Positive Attitudes Towards Persons with Disabilities, Creation and Raising of Awareness’, Draft article 8 of the Chair’s text delivered in October 2005 included the following title: ‘Raising awareness regarding disability’. Finally Working Text adopted by the end of the Seventh Session adopted the last and final title, namely ‘Awareness-raising’. 102 Concluding Observations on the Initial Report of Austria UN Doc CRPD/ C/ AUT/ CO/ 1 (30 September 2013) para 21. 103 CRPD Committee, ‘General Comment No 2 (2014) Article 9: Accessibility’ UN Doc CRPD/C/GC/ 2 (22 May 2014) para 35. 104 105 106 ibid para 19. ibid para 3. ibid para 35. 107 There is a vast literature dealing with stigma, disability, and discrimination. Some of these are: Erving Goffman, Stigma: Notes on the Management of Spoiled Identity (Simon & Schuster 1963); Paul
Bariffi
Article 8
247
society towards persons with disabilities and their attendant rights, paragraph 1(c) focuses on changing the negative effect of stereotypes, prejudices, and harmful practices. Stereotypes and prejudices are the result of social categorization.108 For this reason these terms are not inherently legal concept that relates to any set of specific legal rules, making authors who write about them typically focus on the sociological and not the legal dimensions of human rights.109 Harmful practices, instead, seem to have a more practical approach from the benchmark of non-discrimination.110 While the CRPD does not defines the notions of stereotypes, prejudices, and harmful practices, there are some guidelines which can be found in relation to other groups protected under international human rights law, such as women and children.111 In this respect, the Joint general recommendation No 31 of the Committee on the Elimination of Discrimination (JGC) against Women/general comment No 18 of the Committee on the Rights of the Child on harmful practices, sheds some light into the notion of ‘harmful practices’ which can perfectly be applicable to the context of the CRPD, and more specifically, in relation to article 8. The JGC, begins by explaining that harmful practices are ‘persistent practices and forms of behaviour that are grounded in discrimination on the basis of, among other things, sex, gender and age, in addition to multiple and/or intersecting forms of discrimination that often involve violence and cause physical and/or psychological harm or suffering’. As a result of a harmful practice, ‘the victims surpasses the immediate physical and mental consequences and often has the purpose or effect of impairing the recognition, enjoyment and exercise of the human rights and fundamental freedoms’ and has also a ‘negative impact on their dignity, physical, psychosocial and moral integrity and development, participation, health, education and economic and social status’.112 Likewise, the JGC indicates that practices should meet the following criteria to be regarded as harmful: (a) they constitute a denial of the dignity and/or integrity of the individual and a violation of the human rights and fundamental freedoms enshrined in the two Conventions; (b) they constitute discrimination against women or children and are Hunt (ed), Stigma: The Experience of Disability (Geoffrey Chapman 1966); Jenny Morris, Pride against Prejudice: Transforming Attitudes to Disability (Women’s Press 1991). 108 ‘Social categorization occur when, rather than thinking about another person as a unique individual, we instead think of the person as a member of a group of people, for instance, on the basis of their physical characteristics (such as skin color, gender or age), or other types of categories (as an alcoholic, a policemen, or a schizophrenic).’ See Charles Stangor (ed), Stereotypes and Prejudices: Essential Reading (Psychology Press 2000) 2. 109 Milan Brglez, Samo Novak, Staša Tkalec ‘Stereotyping and Human Rights Law: An (Un)conventional Approach of the European Court of Human Rights’ (2016) 53(5) Teorija in Praksa Ljubljana 1125; the authors conclude that ‘while the trend of evolutive interpretation is reducing direct forms of judicial stereotyping, an approach by the ECtHR that would deconstruct harmful preconceptions as the foundation of structural discrimination has yet to see the light of day’ 1134. 110 It would appear like stereotypes, prejudices are in fact causes, forms, and manifestations of harmful practices. 111 ‘Increasingly, human rights monitoring bodies—including the European and inter-American human rights courts, the Committee on the Elimination of Discrimination against Women, and the Committee on the Elimination of Racial Discrimination—have voiced their concerns about stereotyping and warned States not to enforce harmful stereotypes. Human rights bodies thus appear to be starting to realize what social psychologists discovered a long time ago: that stereotypes underlie inequality and discrimination.’ Eva Brems, Alexandra Timmer (eds), Stereotypes and Human Rights Law (1st edn, Intersentia 2016). 112 Joint general recommendation No 31 of the CEDAW Ctee/CRC Ctee ‘General Comment No 18 on harmful practices’ UN Doc CEDAW/C/GC/31-CRC/C/GC/18 (14 November 2014) para 15.
Bariffi
248
Awareness-Raising
harmful insofar as they result in negative consequences for them as individuals or groups, including physical, psychological, economic, and social harm and/or violence and limitations on their capacity to participate fully in society or develop and reach their full potential; (c) they are traditional, re-emerging or emerging practices that are prescribed and/or kept in place by social norms that perpetuate male dominance and inequality of women and children, on the basis of sex, gender, age, and other intersecting factors; (d) they are imposed on women and children by family members, community members, or society at large, regardless of whether the victim provides, or is able to provide, full, free, and informed consent.113 Accordingly, when it comes to bring these standards to the context of disability rights, from a pure legal point of view, it seems pertinent to reflect on what distinguishes this general obligation of article 8 from the general obligation to combat disability-based discrimination under article 5 CRPD. Or, in other words, can we talk about stereotypes, prejudices, and harmful practices that do not amount to disability-based discrimination? For example, in General Comment No 3 the CRPD Committee deals with the gender perspective of awareness-raising, stressing that women with disabilities are exposed to compounded stereotypes that can be particularly harmful, such as, being burdensome to others, vulnerability, victimhood, being considered inferior; having a sexual abnormality or being mystical or sinister. The Committee reinforces that gender and/or disability stereotyping is the practice of ascribing to a specific individual a stereotypical belief; it is wrongful when it results in a violation or in violations of human rights and fundamental freedoms.114 Likewise, and while the CRPD Committee has not addressed in its contentious cases115 issues related to article 8, it will have to deal soon with several pending cases brought before it alleging discrimination against persons with albinism.116 In some communities, erroneous beliefs and myths, heavily influenced by superstition, put the security and lives of persons with albinism at constant risk.117 As the UN Independent Expert explains, among the most heinous belief is ‘that the body parts of persons with albinism—their skin, hair, genitals and limbs—can generate financial and other desirable gains when used
ibid para 16. General Comment No 3 (2016) on Women and Girls with Disabilities UN Doc CRPD/C/GC/3(25 November 2016) para 47. 115 Noble v Australia UN Doc CRPD/C/16/D/7/2012; Lockrey v Australia UN Doc CRPD/C/15/D/13/ 2013; Beasley v Australia UN Doc CRPD/C/15/D/11/2013; F v Austria UN Doc CRPD/C/14/D/21/2014; A F v Italy UN Doc CRPD/C/13/D/9/2012; Marie-Louise Jüngelin v Sweden UN Doc CRPD/C/12/D/5/ 2011; Liliane Gröninger et al v Germany UN Doc CRPD/C/D/2/2010; X. v Argentina UN Doc CRPD/C/11/ D/8/2012; Bujdosó v Hungary UN Doc CRPD/C/10/D/4/2011; Takács v Sweden UN Doc CRPD/C/9/D/1/ 2010; H M v Sweden UN Doc CRPD/C/7/D/3/2011. 116 There are three cases alleging violation of article 8 CRPD listed under the Committee’s pending cases: Tanzania 22/2014; Tanzania 23/2014; and Tanzania 24/2014, available at: . 117 Persons with albinism are a constituency of persons with disabilities and reports to the Independent Expert indicate that access to this protection framework is often granted to them on the basis of their visual impairment alone. Yet, studies indicate that persons with albinism also face discrimination stemming from their unusual appearance, in particular their colouring—see Applicable international human rights standards and related obligations addressing the issues faced by persons with albinism: Report of the Independent Expert on the enjoyment of human rights by persons with albinism, UN Doc A/72/131 (14 July 2017) para 8; for further details see UN Independent Expert on the Enjoyment of Human Rights by Persons with Albinism UN Doc A/HRC/RES/28/6 (10 April 2015). 113 114
Bariffi
Article 8
249
for witchcraft rituals, practices and paraphernalia’,118 or the ‘myth that intercourse with female persons with albinism can cure infertility, sexually transmitted infections and, in particular, HIV/AIDS’,119 which usually leads to ‘the rape and forced prostitution of women and girls with albinism, some of whom end up contracting various infections’.120 As the UN Independent Expert explains these myths yield several interrelated consequences, such as, abandonment by their families; normalized isolation and discrimination by their communities; vulnerability to attacks; and infanticide.121
3.4 Paragraph 1(c) Article 8, paragraph 1(c) sets forth the obligation upon states parties ‘. . . To promote awareness of the capabilities and contributions of persons with disabilities . . . ’. The rationale, and therefore, the relevance of this provision becomes evident from the benchmark of the social model of disability. The medical model is basically built upon the notion of capability, and thus, the only thing that matters is the capacity of a disabled person to perform ‘normal’ tasks. On the contrary, the social model of disability is built upon the notion of diversity, and thus, is concerned with how capable society is to accommodate human diversity. Accordingly, the CRPD acknowledges that state efforts to raise awareness must also highlight that society not only needs to promote the inclusion of persons with disabilities as part of human diversity, but that it can also benefit from it. Stepping away from the notion of ‘standard capabilities’ it allows society to acknowledge the great value of including, understanding and learning from human diversity. As Prof Stein points out, ‘the disability human rights paradigm, which maintains as a moral imperative that every person is entitled to the means necessary to develop and express his or her own individual talent ( . . . ) This paradigm compels societies to acknowledge the value of all persons based on inherent human worth, rather than basing value on an individual’s measured functional ability to contribute to society.’122 In this context, the CRPD Committee has systematically shown concern about some state practices that consider the primary prevention of impairments to be a measure contributing to implementation of the Convention.123 Likewise, when reviewing the report of Italy the CRPD Committee raised concern ‘. . . about the lack of effective and appropriate measures to promote the capabilities of persons with disabilities and lack of measures to combat stereotypes and prejudices through public awareness campaigns and the use of mass media . . .’.124 118 Report of the Independent Expert on the Enjoyment of Human Rights by Persons with Albinism: A Preliminary Survey on the Root Causes of Attacks and Discrimination against Persons with Albinism UN Doc A/71/255 (29 July 2016) para 16. 119 ibid; besides this statement, it should be noted that the so called ‘virgin clensing myth’ is expressly hurtful to all girls and female youth with disabilities. See Nora Ellen Grocea and Reshma Tras, ‘Rape of Individuals with Disability: AIDS and the Folk Belief of Virgin Cleansing’ (2004) 363 The Lancet, 1663–64; Suzanne Leclerc-Madlala, ‘On The Virgin Cleansing Myth: Gendered Bodies, AIDS and Ethnomedicine’ (2002) 1 African Journal of AIDS Research, 87–95. 120 121 ibid para 17. ibid paras 22–32. 122 Michael Ashley Stein, ‘Disability Human Rights’ (2007) 95(1) California Law Review 77. 123 See eg Concluding Observations on the Initial Report of Bolivia UN Doc CRPD/C/BOL/CO/1 (4 November 2016) para 19; Concluding Observations on the Initial Report of Arab State UN Doc CRPD/C/ ARE/CO/1 (3 October 2016) para 17; Concluding Observations on the Initial Report of Ecuador UN Doc CRPD/C/ECU/CO/1 (27 October 2014) para 20. 124 Concluding Observations on the Initial Report of Italy UN Doc CRPD/C/ITA/CO/1 (6 October 2016) para 19.
Bariffi
250
Awareness-Raising
4. Paragraph 2 As indicated above, paragraph 2 of article 8 complements paragraph 1 by outlining a list of examples of measures which may be taken by states parties in order to implement the obligation set forth in paragraph 1. The list provided in paragraph 2 is not to be considered as a numerus clausus, but encompasses examples of guidelines for states parties upon which to focus their policies and resources. This may be inferred from the wording of the chapeau, which reads as follows ‘. . . Measures to this end include: . . . ’. The verb ‘include’ is indicative of the open-ended character, and therefore the examples provided are not intended to be exhaustive.125
4.1 Paragraph 2(a) The first example of measures listed in paragraph 2(a) include ‘. . . Initiating and maintaining effective public awareness campaigns designed: (i) To nurture receptiveness to the rights of persons with disabilities; (ii) To promote positive perceptions and greater social awareness towards persons with disabilities; (iii) To promote recognition of the skills, merits and abilities of persons with disabilities, and of their contributions to the workplace and the labour market; . . .’. This provision contains an indication of both the nature and the purpose of the measures to be adopted. As regards the former, paragraph 2(a) places the focus on ‘public awareness campaigns’ which must be designed and implemented in such a way as to be ‘effective’. Thus, measures need to be implemented by state parties with public funding and appropriate social impact. Likewise, the first part of the sentence uses the verbs ‘initiating’ and ‘maintaining’, thus acknowledging that while many states parties will need to adapt and maintain existing campaigns, others will need to initiate them in case there is nothing in place. The Reporting Guidelines adopted by the Committee in 2009 indicate that in relation to article 8 states parties should report on: . . . Public-awareness campaigns directed to general society, within the education system and actions undertaken through mainstream media ( . . . ) Actions undertaken to raise awareness and inform persons with disabilities and other parts of society on the Convention and the rights it includes . . . .126
The analysis of the concluding observations adopted by the Committee equally show how states should deal with the lack of specific programmes and the need to adapt existing ones to the exigencies and demands of the CRPD. For example: a) with respect to the absence of specific programmes: the Committee has systematically observed in relation to state reports the lack of specific programmes, including awareness-raising programmes, aimed at eliminating negative stereotypes and prejudices towards persons with disabilities in society;127 b) with respect to need to adapt of transform existing programmes: the Committee has also called for states parties to effectively transform the old-fashioned charity model 125 An analogy can be drawn with the wording used on article 1, paragraph 2 when it indicates that persons with disabilities for the purpose of the CRPD ‘include . . . those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others . . .’. 126 Guidelines on treaty-specific document to be submitted by states parties under article 35, paragraph 1, of the Convention on the Rights of Persons with Disabilities UN Doc CRPD/C/2/3 (18 November 2009). 127 For examples of observations under this model see Concluding Observations on: Brazil para 21; Belgium para 18; Dominican Republic para 15; Croatia para 14; Costa Rica para 18; Gabon para 21; Ethiopia para 18.
Bariffi
Article 8
251
of disability and the perception of persons with disabilities as being in need of protection, and make efforts to reinforce a positive image of persons with disabilities as holders of all the human rights recognized in the CRPD.128 As regards the purpose of the campaigns, paragraph 2(a) brakes down into three specific subparagraphs covering each one a specific subject-area. (i) To nurture receptiveness to the rights of persons with disabilities. While rights are recognized from the moment each state ratifies the treaty, article 8 acknowledges, however, that in order to enforce those rights they need to be known. As indicated above, a great deal of an ‘effective’ awareness campaign relies on that campaign letting know both persons with disabilities and society about the rights recognized. The CRPD Committee has repeatedly emphasized States failure to raise awareness among persons with disabilities of their rights in conformity with the Convention.129 For example, when examining the report of the Dominican Republic the CRPD Committee noted with concern ‘. . . that there have been few campaigns to raise awareness of the rights of persons with disabilities, that they are not consistent with the human rights-based model and that they have not been given wide publicity . . .’.130 Similarly when examining the report of Brazil the CRPD Committee noted ‘. . . the lack of strategies specifically to promote the contents of the Convention and the human rights model of disability to the general public, public officials and private actors . . . ’.131 Consequently, an adequate awareness-raising campaign must have two specific goals ie to let society know the rights of persons with disabilities, and also, to generate the understanding of that society about the rationale of such rights recognition. Thus, in order to achieve society’s understanding the CRPD acknowledges the essential role of training and education. (ii) To promote positive perceptions and greater social awareness towards persons with disabilities. In transition from a medical model to a human rights based approach, the CRPD acknowledges that social perception of persons with disabilities is still rooted in a clear charitable perspective having a negative impact on the way society views disability. Therefore paragraph 2(a) (ii) together with paragraph 1(c) set the obligation upon state parties to generate that social transformation requiring effective public awareness campaigns to focus on the promotion of positive social view towards persons with disabilities. The need to promote social positive perception has been highlighted by the CRPD Committee in several occasions. For example when reviewing the report from Guatemala the Committee expressed to be ‘. . . deeply concerned by the fact that persons with disabilities, especially women, children and indigenous peoples, are victims of customs, superstitions and practices that seriously violate their dignity, safety and other fundamental rights . . . ’.132 Similarly when analysing the report from Paraguay also showed concern ‘. . . at the fact that the State party has not run any campaigns to eliminate negative attitudes to persons with disabilities, notably in the world of work . . .’.133 128 For examples of observations under this model see Concluding Observations on: Chile para 18; Arab Emirates para 18; Ecuador para 21; Uruguay para 20; Peru para 19; Mexico para 18. 129 Inter alia see: Concluding Observations on: Croatia para 13; Costa Rica para 17; Mauritius para 15; UAE para 17. 130 Concluding Observations on the Initial Report of Dominican Republic para 14. 131 Concluding Observations on the Initial Report of Brazil para 20. 132 Concluding Observations on the Initial Report of Guatemala para 25. 133 Concluding Observations on the Initial Report of Paraguay para 21.
Bariffi
252
Awareness-Raising
(iii) To promote recognition of the skills, merits and abilities of persons with disabilities, and of their contributions to the workplace and the labour market: As indicated under paragraph 1(c), the CRPD acknowledges that state effort to raise awareness must also highlight that society not only needs to promote the inclusion of persons with disabilities as part of human diversity, but it can also benefit from it. For this reason, the inclusion of a reference to the workplace in paragraph 2(a) (iii) was certainly not by chance. Historical disability based discrimination has been justified under the rationale that persons with disabilities are incapable to contribute to the society’s needs. CRPD require State Parties to raise social awareness that this ‘social belief ’ not only is discriminatory but it is also a myth. In fact, this myth is explicitly dismantled by the International Labour Organization (ILO) in the document called ‘Reporting on Disability: Guidelines for the Media’:134 MYTH: Persons with disabilities are unable to meet performance standards, thereby making them an employment risk. FACT: Employers of disabled workers consistently report that, as a group, people with disabilities perform on par or better than their non-disabled person measures such as productivity, safety and attendance. In addition, people with disabilities are more likely to stay on the job. The costs of job turnover, such as lost productivity and expenses related to recruitment and training, are well known to most employers.
Similarly, when examining the State report of Mongolia the CRPD Committee expressed concern ‘. . . about negative attitudes towards persons with disabilities in the State party, as manifested in everyday language, the media and events such as “disability prevention day”, which represents a concept that is contrary to the principles of the Convention . . .’.135 Likewise, when examining Denmark’s State report the CRPD Committee expressed its concern in relation to the ‘. . . prevailing prejudice among the general population regarding various forms of disabilities, which negatively affects the ability of persons with disabilities to enjoy rights on an equal basis, including in the area of employment . . .’.136 Examples of good practices: The Disability Equality Training Forum (DET Forum) was established as a network of DET facilitators in 2005. Disability Equality Training is a participatory process where people are introduced to the real issues and discrimination facing all disabled people with a view to them changing their behaviour, policies, and practices. The DET perspective differentiates from the disability training awareness, basically from the fact that DET are designed and delivered by the people who have directly experienced discrimination. BRIDGE CRPD-SDG is an intensive training programme that aims to support organizations of persons with disabilities (DPOs) and disability rights advocates to develop an inclusive (all persons with disabilities) and comprehensive (all human rights) CRPD perspective on development, including the post-2015 agenda and Sustainable Development Goals (SDGs),137 to reinforce their advocacy for inclusion and realisation of rights of persons with disabilities. This training initiative results from common observations that 134 Jeannette Sanchez, Reporting on Disability: Guidelines for the Media (2nd edn, International Labour Office, Gender, Equality and Diversity Branch 2015) 12. 135 Concluding Observations on the Initial Report of Mongolia para 14. 136 Concluding Observations on the Initial Report of Denmark para 22. 137 UNGA Res 70/1 (21 October 2015), ‘Transforming our World: The 2030 Agenda for Sustainable Development’.
Bariffi
Article 8
253
despite great achievements to raise awareness about the rights of persons with disabilities through global advocacy, inclusive societies are still far from the reality experienced by persons with disabilities, especially those living in low and middle-income countries.
4.2 Paragraph 2(b) Paragraph 2(b) focuses on the educational system indicating that State Parties’ awareness raising efforts shall include ‘ . . . Fostering at all levels of the education system, including in all children from an early age, an attitude of respect for the rights of persons with disabilities . . .’. This provision echoes article 24 which asserts that the inclusive education system must be directed, inter alia, to the ‘ . . . full development of human potential and sense of dignity and self-worth, and the strengthening of respect for human rights, fundamental freedoms and human diversity . . .’. Accordingly, on General Comment No 4 the Committee highlights the relevance of awareness-raising in implementing the right to inclusive education stressing that stereotypes, prejudices, and harmful practices constitute barriers that impede both access to and effective learning within the education system. The Committee also acknowledges that the lack of awareness and understanding of the nature of disability provokes educational segregation and therefore indicates that states parties must adopt measures to build a culture of diversity, participation and involvement in community life and to highlight inclusive education as a means of achieving a quality education for all students, with and without disabilities, parents, teachers, and school administrations, as well as the community and society.138 Likewise, when reviewing the State report of Belgium the Committee stressed that ‘. . . The stigmatization and exclusion of persons with disabilities is evident in several policies because of, among other things, the continued existence of a strong medical model, reliance on residential care as the main form of care and the maintenance of the segregated education system . . .’.139 Similarly, when analyzing the report from Sweden the CRPD Committee expressed concern ‘. . . about the lack of knowledge among the general population about different disabilities, relevant factors and reasonable accommodation needs related to disabilities, in particular in the education system and among decision makers . . .’.140 In other words, the right to inclusive education not only allows persons with disabilities to fulfil their right to education but it also allows other children without disabilities to raise awareness and understanding of disability as part of diversity in a natural inclusive environment.
4.2.1 Examples of good practices Keep Me Safe141 project ‘Empowering young people with learning disabilities to protect themselves against sexual abuse and violence across Europe’ was launched in 2013 with the aim to harness the best practice, expertise and proven strategies on the prevention of sexual abuse and violence against young people with learning disabilities.
138 General Comment No 4 (2016) on the Right to Inclusive Education, UN Doc CRPD/C/GC/4 (25 November 2016) para 48. 139 Concluding Observations on the Initial Report of Belgium para 17. 140 Concluding Observations on the Initial Report of Sweden para 21. 141 Available at: .
Bariffi
254
Awareness-Raising
The Supported Decision-Making Service for Persons with Disabilities142 is a tool and guide to promote the right of persons with disabilities to make their own decisions regarding their lives on the basis of supported decision-making. Based on the experience of a pilot project, this initiative provides valuable and practical resources for both persons with disabilities and persons providing support for the exercise of the legal capacity.143 In Touch,144 was a project that ran from 2007 to 2010 in order to give young disabled people greater and easier access to services and information around sexual health. By taking part, young disabled people were able to influence policy makers and managers of sexual health services, showing that young disabled people have needs as vital as their non-disabled counterparts and that these need to be met. The Ibero-American Network of Experts on the International Convention on the Rights of Persons with Disabilities is an organization with academic and social goals whose mission is the study, implementation, and monitoring of the International Convention on the Rights of Persons with Disabilities (CRPD), as well as of the legal and social principles promoted by the Convention.145 During the period 2015–18 the Network launched a project for the inclusion of the disability rights perspective at the higher educational system.
4.3 Paragraph 2(c) Paragraph 2 (c) asserts that States Parties must encourage ‘. . . all organs of the media to portray persons with disabilities in a manner consistent with the purpose of the present Convention . . .’. Article 8 acknowledges that the media plays a significant role in awareness-raising. This includes not only the use of the media to broadcast specific disability-centred campaigns but also the way the whole media content portrays persons with disabilities. For example, several Latin-American State Parties celebrate an annual fund-raising charity event for persons with disabilities known as ‘Teletón’ (television + marathon).146 While this event has been on air for over three decades it has long been criticized for portraying a paternalist approach towards children with disabilities clearly based on the medical model of disability. The CRPD Committee expressed in this respect when reviewing the report of Peru that ‘. . . while taking note of some steps taken by the State party to raise awareness on the rights of persons with disabilities, such as the national radio broadcasts, the Committee remains concerned at the insufficiency of these measures and at the existence of private fundraising initiatives using negative stereotypes and charity based approach (such as the Peruvian Telethon). The Committee draws the attention of the State party to the fact that far from promoting rights and empowering persons with disabilities, these campaigns perpetuate and reproduce stigma and, thus hinder the possibility of constructing a culture in which Available at: . See the full report ‘Supported Decision-Making Service for Persons with Disabilities | Service Model’, available at: (accessed 27 October 2017); see also YouTube series on article 12 stories ; Talking Rights—an internet site with 2 lectures on YouTube on articles 12+19 for persons with disabilities; parents and professionals, available at: . 144 Available at: . 145 Available at: . 146 In Chile, available at: ; in Mexico, available at: ; in United States, available at: ; in Colombia, available at: ; in Uruguay, available at: ; in Peru, available at: . 142 143
Bariffi
Article 8
255
persons with disabilities are recognized as part of human diversity and society . . . ’.147 Similar Observations have been adopted in relation to Colombia,148 Mexico,149 Uruguay,150 Chile, 151 and Guatemala.152 The ILO guidelines for the media acknowledge how important is that both journalists and communications professionals connect disability issues with human dignity and rights, and consequently, some tips for promoting the positive portrayal of persons with disabilities. These are: i) support the human rights-based approach; ii) focus on the person, not the impairment; iii) emphasize ability, not the disability (unless it is critical to the story); iv) show persons with disabilities as active in society; v) allow people with disabilities to speak for themselves; vi) don’t overemphasize disabled ‘heroes’.153 On a recent case in Peru, the Supreme Ethic Tribunal of the National Society of Radio and Television (SNRTV), decided that the TV show named ‘nunca más’ breached the Ethic Code by affecting a woman’s rights to personal and family intimacy when broadcasting her compulsory commitment in a psychiatric institution.154 While the Tribunal explicitly indicated that it had no jurisdiction to assess the legality of alleged actions under article 8 of the CRPD, this case seems relevant as a good example of awareness- raising advocacy options.
4.3.1 Examples of good practices The Canadian Association of Broadcasters Equitable Portrayal Code (2008)155 was created to ensure the equitable portrayal of all persons in television and radio programming. The Code is intended to overcome unduly negative portrayal and stereotyping in broadcast programming, including commercial messages, based on matters of race, national or ethnic origin, colour, religion, age, gender, sexual orientation, marital status, or physical or mental disability. Likewise, the following targeted awareness- raising campaigns can be underlined. The French organization LADPT156 has launched the following successful campaigns: #Sanslimites,157 #Sensibiliser,158 #KillLaBetise.159 The French Federation of Associations for Persons with Disabilities has the campaign #melaniepeutlefaire.160 The Canadian organization DAWN-RAFH launched in 2014 the campaign ‘We Can Tell and We Will’161 to encourage persons with disabilities to report sexual abuse. The American Dance Concluding Observations on the Initial Report of Peru para 18. Concluding Observations on the Initial Report of Colombia para 20. 149 Concluding Observations on the Initial Report of Mexico para 17. 150 Concluding Observations on the Initial Report of Uruguay para 19. 151 Concluding Observations on the Initial Report of Chile para 17. 152 Concluding Observations on the Initial Report of Guatemala para 25. 153 Sanchez, Reporting on Disability: Guidelines for the Media (n 107). 154 Tribunal de Ética de la Sociedad Nacional de Radio y Televisión. Decisión de 14 de abril de 2016, available at: . 155 Available at: . 156 Available at: . 157 See the flyer, available at: . 158 See the flyer, available at: . 159 Available at: . 160 Available at: . 161 Available at: . 147 148
Bariffi
256
Awareness-Raising
Therapy Association (ADTA) launched in 2016 the campaign ‘Listen, Act, Rise’.162 The Belgium organization UNIA (Interfederal Centre for Equal Opportunities) launched the campaign ‘I have a disability and I have rights’.163
4.4 Paragraph 2(d) Article 8 CRPD paragraph 2(d) states that awareness raising measures shall include ‘. . . Promoting awareness-training programmes regarding persons with disabilities and the rights of persons with disabilities . . . ’. This statement is then reaffirmed on article 4 CRPD paragraph 2(i) which outlines the general obligation upon States Parties to ‘. . . ensure and promote the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability . . .’ and to that end to ‘. . . .promote the training of professionals and staff working with persons with disabilities in the rights recognized in the present Convention so as to better provide the assistance and services guaranteed by those rights . . . ’. Similarly, as Marianne Shulze emphasizes on her commentary to article 8 ‘encouragement of media is a new provision among core human rights treaties, save the comparable intention of article 17 CRC, which recognizes the important function performed by the mass media. In particular article 4 (1) (e) on eliminating discrimination by private enterprises and organizations is of vital importance in the context of media responsibility.’164 While society in general is the ultimate focus of awareness-raising, CRPD acknowledges that certain key stakeholders need to receive specific training in order to fully implement the treaty obligations. For this reason, the duty to promote ‘awareness- training programmes’ is also present in several other provisions, such as article 9(2)(c); article 13(2); 20(c); article 24(4); article 25(d); article 26(2); article 27(1)(d); and article 32(1)(b). In this context, for example, on General Comment No 1 the Committee stresses the importance of training and awareness-raising for professionals like police officers, social workers, and other first responders,165 and also the importance of raising awareness about different support options.166 Likewise, in reviewing State reports, the Committee has also reiterated in many observations the lack of initiatives in relation to awareness-raising and training for government officials, health, legal, educational, and social work professionals, the judiciary, police, elections officers, media practitioners/journalists, and other staff to effectively modify society’s perception of persons with disabilities as being in need of protection, by portraying a positive image of persons with disabilities as holders of human right.167 Similarly, the Committee has repeatedly reminded States Parties the obligation to consult and cooperate with the organizations of persons with disabilities in the design Available at: . Available at: . 164 Marianne Schulze, ‘Understanding the UN Convention on the Rights of Persons with Disabilities’ (2010) 3rd edn, 74, available at: . 165 General Comment No 1 (2014) Article 12: Equal Recognition Before the Law UN Doc CRPD/C/GC/ 1 (19 May 2014) para 39. 166 ibid para 45. 167 For examples of observations under this model, see Concluding Observations on: Tunisia para 19; Colombia para 21; Bolivia para 20; Sweden para 22; Spain para 26; Germany para 20. 162 163
Bariffi
Article 8
257
and adoption of awareness-training programmes, aimed at eliminating prejudices, or at reinforcing the positive image of persons with disabilities as holders of all the human rights.168
4.4.1 Examples of good practices The ‘Know your Rights, Use your Rights, Live your Rights!’169 is the overarching theme of Disability Wales’ three-year core programme (2012–15) with the purpose of providing persons with disabilities and society in general with knowledge and information about disabled people’s rights and how they can use them to promote equality and eliminate discrimination and harassment in their community. It included a booklet with easy and systematized information about legislation, and outlines several case studies whereby disabled people and their organizations have successfully argued their rights under the Equality Act (2010), the Public Sector Equality Duties and the UN Convention on the Rights of Persons with Disabilities.170 Human Rights YES!171 is a training and advocacy tool based on the UN Convention on the Rights of Persons with Disabilities, and is designed to equip persons with disabilities and their representative organizations to integrate a comprehensive and globally- minded human rights approach into their advocacy work. The tool was developed to equip persons with disabilities and their representative organizations to integrate a comprehensive human rights approach in to their advocacy work. The training exercises in Human Rights. YES! are designed to enhance organization, individual empowerment, and self-advocacy initiatives.
168 For examples of observations under this model see Concluding Observations on: Azerbaijan para 21; Denmark para 25; Austria para 22. 169 Available at: . 170 Know your Rights, Use your Rights, Live your Rights!: An Information Resource for Disabled People and Disabled People’s Organizations, available at: . 171 Available at: .
Bariffi
Article 9 Accessibility ( 1) To enable persons with disabilities to live independently and participate fully in all aspects of life, States Parties shall take appropriate measures to ensure to persons with disabilities access, on an equal basis with others, to the physical environment, to transportation, to information and communications, including information and communications technologies and systems, and to other facilities and services open or provided to the public, both in urban and in rural areas. These measures, which shall include the identification and elimination of obstacles and barriers to accessibility, shall apply to, inter alia: (a) Buildings, roads, transportation and other indoor and outdoor facilities, including schools, housing, medical facilities and workplaces; (b) Information, communications and other services, including electronic services and emergency services. ( 2) States Parties shall also take appropriate measures to: (a) Develop, promulgate and monitor the implementation of minimum standards and guidelines for the accessibility of facilities and services open or provided to the public;
(b) Ensure that private entities that offer facilities and services which are open or provided to the public take into account all aspects of accessibility for persons with disabilities; (c) Provide training for stakeholders on accessibility issues facing persons with disabilities; (d) Provide in buildings and other facilities open to the public signage in Braille and in easy to read and understand forms; (e) Provide forms of live assistance and intermediaries, including guides, readers and professional sign language interpreters, to facilitate accessibility to buildings and other facilities open to the public; (f) Promote other appropriate forms of assistance and support to persons with disabilities to ensure their access to information; (g) Promote access for persons with disabilities to new information and communication technologies and systems, including the Internet; (h) Promote the design, development, production and distribution of accessible information and communications technologies and systems at an early stage, so that these technologies and systems become accessible at minimum cost.
1. Introduction 2. Background and Travaux Préparatoires 2.1 Early Incarnations of Article 9 2.2 The Relationship Between Article 9 and Other CRPD Provisions 2.3 The Scope and Emphasis of Article 9 2.4 Nature of the Obligation 3. Paragraph 9(1) 3.1 ‘To enable persons with disabilities to live independently and participate fully in all aspects of life’ 3.2 ‘Appropriate Measures to Ensure’ 3.3 ‘Access, on an Equal Basis with Others’
lawson
259 262 262 262 265 266 268 268 269 273
Article 9 3.4 ‘Physical Environment’ 3.5 ‘Information and Communications, Including Information and Communications Technologies and Systems’ 3.6 ‘Other Facilities and Services Open or Provided to the Public’ 3.7 ‘Identification and Elimination of Obstacles and Barriers’ 3.8 ‘Accessibility’ 4. Paragraph 9(2) 4.1 Paragraph 9(2)(a)—‘Minimum Standards and Guidelines’ 4.2 Paragraph 9(2)(b) 4.3 Paragraph 9(2)(c)—‘Training for Stakeholders’ 4.4 Paragraph 9(2)(d) 4.5 Paragraph 9(2)(e) 4.6 Paragraph 9(2)(f ) 4.7 Paragraph 9(2)(g) 4.8 Paragraph 9(2)(h)
259 274 275 277 279 279 281 281 282 283 283 284 284 285 285
1. Introduction Article 9 of the UN Convention on the Rights of Persons with Disabilities (CRPD) is a novel provision in international human rights law. It is the first provision in a human rights treaty to focus on articulating rights to accessibility. That said, article 9 draws on, and makes explicit, principles which were already at work in international human rights law. The importance of accessibility to the CRPD’s mission (of ensuring that human rights are enjoyed by people with disabilities on an equal basis with others1) has been repeatedly acknowledged. Before the CRPD for instance, during the United Nations sixth session of the Ad Hoc Committee on the then embryonic treaty, Thailand and Israel asserted that the importance of the draft accessibility article was such as to ‘justif[y]the existence of this convention’;2 and South Africa, speaking for the African Group, stated that accessibility was the ‘main prerequisite for equal participation of persons with disabilities in mainstream society’.3 Some years later, after the adoption and entry into force of the CRPD, Ron McCallum, then chair of the UN Committee on the Rights of Persons with Disabilities (CRPD Committee), stated that: We cannot think of anything more crucial for persons with disabilities than accessibility.4
Although people with disabilities have been particularly disadvantaged by the exclusionary impact of accessibility barriers to the physical, information, communication, and technological environments, those barriers also create difficulties for many people who do not have disabilities—steps, for example, create difficulties for anybody carrying heavy luggage or pushing a pram; and equipment which requires information to be typed presents 1 This is in essence the purpose of the CRPD as articulated in Art 1. The term people ‘with disabilities’ is used in this chapter for reasons of consistency with the language of the CRPD and other chapters in this book. 2 Rehabilitation International, ‘UN Convention on the Human Rights of People with Disabilities: Ad Hoc Committee—Daily Summaries’ (6th session), available at: entry for 9 August 2005, on the structure of the convention. 3 ibid. 4 CRPD Committee, Ron McCallum ‘Opening remarks at the Day of General Discussion on Accessibility’ (7 October 2010).
lawson
260
Accessibility
difficulties for many who would prefer to input information through speech. It is therefore not just people with disabilities who stand to benefit from article 9. Implementation of the obligations it sets out will, in a very literal sense, reshape the physical and technological world we all inhabit and our methods of communication and interaction—a process which will itself require the embedding of relevant behaviour-change, innovation, training, and monitoring.5 Article 9 has played a significant role in the work of the CRPD Committee. It has been consistently addressed in the Committee’s concluding observations and is the subject of its second general comment. In addition, by the end of 2016, the Committee had found that article 9 had been breached in five cases—Nyusti and Takács v Hungary,6 decided in spring 2013; X v Argentina,7 decided in spring 2014; F v Austria,8 decided in autumn 2015; Beasley v Australia,9 decided in spring 2016; and finally Lockrey v Australia,10 also decided in spring 2016. The first of these cases concerned the accessibility of Automatic Teller Machines (ATMs) in banks; the second concerned the accessibility of various facilities within a prison environment; the third concerned the accessibility of public transport information systems; and the last two both concerned the accessibility of the justice system for deaf jurors. There is therefore a growing body of Committee work designed to provide guidance about how article 9 should be implemented. This chapter provides a systematic analysis of article 9. It aims to deepen understanding of the thinking which shaped it—by providing a comprehensive analysis of its treatment at the hands of the Ad Hoc Committee which drafted the Convention; the guidance on it provided by the CRPD Committee to date; and questions which remain unresolved and which, it will be argued, require attention and clarification. Suggestions will be made as to how article 9 could most helpfully be interpreted and implemented so as to provide clarity and strengthen coherence with the wider international human rights system. Article 9’s novelty as a human rights provision inevitably gives rise to searching questions about the nature and implications of the rights and associated obligations which it sets out. The CRPD Committee, particularly in its General Comment No 2, has begun to grapple seriously with these questions—a process which has already resulted in important clarifications. Particularly helpful has been guidance about the need for a strategic and dynamic approach to accessibility, with a focus on on-going training, monitoring, mainstreaming, and enforcement. The Committee’s guidance on trans-national collaboration in the development of accessibility standards is also noteworthy—as is the helpful distinction made between accessibility and reasonable accommodation. Notwithstanding these immensely important contributions, troubling uncertainties, and confusions remain. The issue most urgently in need of clarification concerns the extent to which article 9 obligations are subject to progressive realisation. While General Comment No 2 acknowledges that article 9 requires accessibility to be achieved in a gradual manner for existing 5 For ICT-related examples see Jonathan Lazar and Michael Ashley Stein (eds), Global Inclusion: Disability, Human Rights and Information Technology (University of Pennsylvania Press 2017). 6 CRPD Committee Nyusti and Takács v Hungary UN Doc CRPD/C/9/D/1/2010 (21 June 2013). 7 X v Argentina UN Doc CRPD/C/11/D/8/2012 (18 June 2014). 8 F v Austria UN Doc CRPD/C/14/D/21/2014 (21 September 2015). 9 CRPD Committee Beasley v Australia UN Doc CRPD/C/15/11/2013 (25 April 2016). 10 CRPD Committee Lockrey v Australia UN Doc CRPD/C/15/D/13/2013 (30 May 2016).
lawson
Article 9
261
environments and services, there is no evidence in its jurisprudence that it is taking this into account when assessing whether or not article 9 has been breached. A more considered and more explicit discussion of progressive realisation would both help to provide clarity about the implementation of article 9 and also to position article 9 more securely on well-worked ground provided by other treaty bodies—particularly the Committee on Economic Social and Cultural Rights (CESCR). Important questions also linger about how accessibility within article 9 relates to ‘accessibility’ in the sense used in other human rights contexts—for instance the right to the highest attainable standard of health. Clarity about this would not only facilitate understanding and implementation of article 9, but would also enrich processes of dialogue and cross-reference with other treaty bodies, increasing the likelihood of CRPD accessibility- related developments being adopted and applied in other contexts. The chapter will be divided into three main sections in addition to the introduction. The first of these will focus on the Ad Hoc Committee debates that shaped and situated article 9. This will be organized thematically under four distinct headings so as to facilitate analysis of key recurring issues. The second and third sections will focus on the current text of article 9 (paragraphs 9(1) and 9(2) respectively), its implications and the way in which it has been understood and applied, particularly by the CRPD Committee. Cross-cutting themes will be highlighted throughout, as will any relevant domestic caselaw. As well as academic and other literature, the chapter will draw upon a range of sources. At the UN level, these will include, in particular, the debates of the Ad Hoc Committee that drafted the terms of the CRPD, and relevant general comments, jurisprudence, and concluding observations (particularly of the CRPD Committee). Although lists of issues sometimes include thought-provoking material relating to article 9,11 no attempt will be made here to subject them to a comprehensive or systematic scrutiny. The domestic case law referred to in this chapter is that analysed in a recent study of the way in which the CRPD was used and interpreted in thirteen jurisdictions.12 According to this, article 9 was seldom cited by judges in most countries,13 although a significant exception was Russia, where it was reported that article 9 was cited in approximately a thousand cases14—no other CRPD article being cited more frequently in any of the jurisdictions analysed.
11 See eg CRPD Committee, List of Issues for Austria UN Doc CRPD/C/AUT/Q/1 (8 May 2013) questions 11–14. Particularly noteworthy are question 11, which inquires about plans to increase the accessibility of private buildings, and question 14, which inquires about the proportion of broadcast radio and television programmes accessible to blind and deaf people. 12 Lisa Waddington and Anna Lawson, ‘The United Nations Convention on the Rights of Persons with Disabilities in Practice: A Comparative Analysis of the Role of Courts’ (OUP 2018). The jurisdictions included were Argentina, Australia, Council of Europe (European Court of Human Rights and European Committee on Social Rights), European Union, Germany, India, Ireland, Italy, Kenya, Mexico, Russia, Spain, and the United Kingdom. 13 ibid ch 15, s 2.9. 14 Dmitri Bartinev and Ekaterina Evdokimova, ‘Russia’ in Waddington and Lawson (n 12).
lawson
262
Accessibility
2. Background and Travaux Préparatoires 2.1 Early Incarnations of Article 9 What is now article 9 of the CRPD appeared under different numbers in earlier versions of the text. A brief outline of the numbering and text of former incarnations of the article is provided here to facilitate deeper reflection on particular aspects of article 9’s journey through the Ad Hoc Committee meetings. Elements of what finally became article 9 of the CRPD appear in draft article 6 of the working paper produced by Mexico for the first of the Ad Hoc Committee sessions held in 2002. This read as follows: States Parties recognize the right of persons with disabilities to freedom of movement and to have an accessible environment to guarantee their autonomy, independence, and full participation in all activities. States Parties shall legislate or take steps to ensure that: a) Urban outfitting and public services and facilities for public use have the adaptations necessary to facilitate access, use, and circulation for persons with disabilities. b) Vehicles and public transport services allow the access and mobility of persons with disabilities. c) The existence of adaptations, signposting, and basic forms of communication for the freedom of movement and access to all public services and those available to the public. d) The construction and adaptation of housing comply with regulations governing accessibility for persons with disabilities.
Articles 7 and 8 of this paper are also relevant to what has become article 9 of the CRPD although they appear to be more directly linked to what has ultimately become article 21. In the draft text prepared by the Working Group of the Ad Hoc Committee in January 2004,15 draft article 19 was given the title ‘accessibility’. Between the sixth and seventh sessions of the Ad Hoc Committee, the chair compiled a revised version of the text, in which the article on accessibility appeared as article 9 and not as article 19.16
2.2 The Relationship Between Article 9 and Other CRPD Provisions The focus—and indeed the title—of article 9 is accessibility. However, it is not the only CRPD provision to deal with this important issue. The concept is one which runs throughout the treaty—the terms ‘accessible’ and ‘accessibility’ appearing some twenty-five times in its text. This reflects the considerable importance attached to accessibility by the Ad Hoc Committee. This is perhaps unsurprising given the influential role played by social model approaches to disability in the Ad Hoc Committee’s drafting—as illustrated by the following words in the preamble to the CRPD: disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society.17
15 ‘Draft Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’—attached as Annex 1 to ‘Report of the Working Group to the Ad Hoc Committee’ UN Doc A/AC265/2004/WG/1 (16 January 2004). 16 Letter from the chair to all members of the Committee UN Doc A/AC265/2006/1 (14 October 2005) Annex I Draft Art 9. 17 This is the language used in what became the preambular para (e) of the CRPD. For examples of connections being made between a social model approach and accessibility rights, see eg the accounts of Panels 2 and 3 in the ‘Report of the second session of the Ad Hoc Committee’ UN Doc A/58/118 & Corr 1 (3 July
lawson
Article 9
263
Similarly, article 1 draws attention to the way in which ‘various barriers may hinder . . . full and effective participation in society’ by people who have ‘impairments’. As is to be expected, therefore, a recurrent theme in the Ad Hoc Committee’s discussions about what became article 9 was the extent to which accessibility-related matters should be duplicated in other articles and what, if anything, would better be moved into other provisions. Underpinning these debates were questions about what role this article was to play in the Convention as a whole. The Ad Hoc Committee’s discussions reveal a general consensus about the need to consolidate provisions relating to accessibility so as to avoid overlap and duplication, whilst at the same time ensuring that accessibility obligations permeated and were read into all parts of the CRPD. As Don McKay noted at the opening of the discussion of draft article 19 during the sixth session of the Ad Hoc Committee: Various proposals have been made at earlier meetings about moving elements of Article 19 to other parts of the Convention, and bringing parts of other articles into Article 19. . . . There are different views amongst the delegations about whether to expand or contract Article 19.18
There was extensive discussion of the respective roles of the accessibility article (draft article 19 and subsequently draft article 9) and draft article 20 (on personal mobility).19 Indeed, according to the report of the Ad Hoc Committee’s sixth session: There was considerable discussion in the Committee of the relationship and overlap between draft articles 19 and 20 . . . . The Committee noted that draft articles 19 and 20 are essentially two sides of the same coin. There was general support to merge the two draft articles.20
However, a more cautious approach is evident in the letter of the chair to all members of the Ad Hoc Committee prior to its seventh session, according to which: Although there was initially support for merging (old) Articles 19 and 20, this weakened as the discussion went on and several delegations subsequently supported the retention of a separate Article 20 as it deals with individual mobility rather than accessibility. While there was clearly agreement that the duplication between the two Articles should be removed, there was concern that elements might be lost in a merger of the two. I have therefore retained a shorter Article 20, which contains those elements not already in Article 19 (now 9).21
Attention also focused on the relationship (and potential overlap) between the accessibility article and draft article 13 (which ultimately became article 21, on freedom of 2003) Annex II. Also relevant are two documents made available to the Ad Hoc Committee at its second session—ie ‘Bangkok Recommendations on the Elaboration of a Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/ 2003/CRP/10 (2–4 June 2003) paras 31 and 33; and ‘Beirut Declaration and Recommendations on the elaboration of a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities’ UN Doc A/AC265/2003/CRP/12 (27–29 May 2003) para 7. Rehabilitation International (n 2), (6th session) entry for 5 August 2005. See eg Landmine Survivors Network, ‘UN Convention on the Rights of People with Disabilities: Ad Hoc Committee Daily Summary’ (3rd session), available at: entry for 1 June 2004, on Draft Article 20; and Rehabilitation International, ‘UN Convention on the Human Rights of People with Disabilities: Ad Hoc Committee—Daily Summaries’ (7th session), available at: entry for 20 January 2006. 20 ‘Report of the Ad Hoc Committee on a comprehensive and integral international convention on the protection and promotion of the rights and dignity of persons with disabilities on its sixth session’ UN Doc A/60/ 266 (17 August 2005) Annex II, para 65; see also paras 74 and 75. 21 Letter of the chair to all members of the Committee (n 16) para 75. 18 19
lawson
264
Accessibility
expression)22–concerning, for example, accessibility of the internet and information and the training of intermediaries and interpreters in accessible communication.23 In addition, the Ad Hoc Committee explored the relationship, as well as the need for some overlap between draft article 19 and draft articles 2 (on general principles)24 and 4 (on general obligations).25 Alongside these debates about mergers and overlaps were discussions of the place and role of the accessibility article in the CRPD. As early as the third session of the Ad Hoc Committee, the session which followed the publication of the Working Group’s draft text, there were calls (led by the EU) for the accessibility article to be moved from article 19 and placed earlier in the treaty26 in order to recognize the important cross-cutting role of accessibility and its close relationship with equality and non-discrimination. As Israel noted: Accessibility is the other side of equality and should be made a part of general provisions, placed after non-discrimination . . .27
Whilst this view appeared to capture the flavour of the majority of the contributions, it was not universally endorsed, as illustrated by Australia’s proposal in the sixth session that the accessibility article was more in the nature of an ‘implementation measure’ and should therefore be positioned in the last of five main parts of the treaty, along with other monitoring and implementation provisions.28 While such an approach would have highlighted the cross-cutting relevance of accessibility to all CRPD rights, it may have weakened the status of accessibility as in itself a substantive right. The question of whether an implementation provision might also set out a substantive right was not examined. However, the risk that accessibility requirements might be treated as somehow ancillary or unenforceable appears to underpin concerns such as that expressed by the Mental Disability Rights Initiative that the draft accessibility article did not make it sufficiently clear that accessibility was a right to which people with disabilities were entitled.29
22 See eg Landmine Survivors Network (n 19) (3rd session) entry for 27 May 2004, on Draft Article 13; Disabled Peoples’ International, Handicap International and the International Service for Human Rights, ‘UN Convention on the Human Rights of People with Disabilities: Ad Hoc Committee—Daily Summary’ (4th session), available at: entries for 26 and 27 August 2004; Rehabilitation International, ‘UN Convention on the Human Rights of Persons with Disabilities: Ad Hoc Committee—Daily Summaries (5th session), available at: entry for 1 February 2005; and Rehabilitation International (n 2) (6th session) entry for 5 August 2005 on Draft Article 19. 23 This point was recognized in the letter from the chair to all members of the Committee (n 16) para 49— where changes made to the draft text in light of these discussions are explained. 24 See eg Disabled Peoples’ International et al (n 22) (4th Session) entry for 23 August 2004 on Draft Article 2, particularly the comments of Thailand. See also Report of the Ad Hoc Committee on its Sixth session (n 20) Annex II, para 66. 25 See eg Landmine Survivors Network (n 19) (3rd session) entry for 1 June 2004 on Draft Article 19; and Rehabilitation International (n 19) (7th session) entry for 31 January 2006 on Draft Article 4; see also ‘Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its Fourth Session’ UN Doc A/59/360 Distr (14 September 2004) para 9. 26 See eg Landmine Survivors Network (n 19) (3rd session) entry for 1 June 2004 on Draft Article 19 and Rehabilitation International (n 2) (6th session) entry for 5 August 2005. 27 Rehabilitation International (n 2) (6th session) entry for 9 August 2005 on the structure of the convention. 28 ibid. 29 Rehabilitation International (n 19) (7th session) entry for 17 January 2006 on Draft Article 9.
lawson
Article 9
265
2.3 The Scope and Emphasis of Article 9 Another strand of the Ad Hoc Committee debates on what became article 9 concerned its scope and emphasis. The importance of ensuring that the scope of the article was broad and inclusive was repeatedly stressed, together with a recognition that an attempt to list too many specific examples would potentially undermine efforts to achieve this— particularly in light of future technological developments.30 Summing up the discussion of draft article 19 at the sixth session of the Ad Hoc Committee, the chair noted that: Many advocated shortening the Article, but submitted proposals to add language to cover particular situations. The Committee will have to balance the desire to focus on general provisions against the tendency to list examples which might be read as exclusive.31
Many of the comments on this draft article—particularly in early sessions of the Ad Hoc Committee, made by disability organizations and governments alike—drew attention to the fact that it should clearly engage with accessibility for people with intellectual or psychosocial impairments as well as people with physical or sensory ones.32 In similar vein, when summing up the discussion of this article at the sixth session, the chair noted that, ‘this Convention needs to deal equitably with all disabilities and all types of accessibility’.33 The report of the sixth session notes that: A number of delegations pointed out that ‘accessibility’ was not just about access to buildings. Accessibility also related to, for example, accessible information. It was important to ensure that this draft article did not slant towards one type of accessibility.34
Much debate concerned the extent to which the article should affect the private sector. Many of the contributions focused on the need to include, within the scope of the article, services and facilities open to the public regardless of whether they were in public or private ownership—a point on which there was clear consensus.35 The Africa Group proposed going beyond this, so that states would be required to ensure, on a progressive basis,36 the accessibility of ‘private entities in general, which do not render public services or cater to the public’.37 While this broad wording did not survive into the final text, various contributions drew attention to the exclusionary impact on people with disabilities of inaccessible housing and workplaces—neither of which need be open to the
30 See eg Landmine Survivors Network (n 19) (3rd session) entry for 1 June 2004 (in particular, contributions by Landmine Survivors Network, the EU, Canada, PWD Australia/NACLC/Australian Federation of Disability); and also Rehabilitation International (n 2) above (6th session) entry for 5 August 2005 (in particular, by Mexico and Norway). 31 Rehabilitation International (n 2) (6th session) entry for 9 August 2005 on Draft Article 19. 32 See eg Disabled Peoples’ International et al (n 22) (4th session) entry for 1 June 2004 on Draft Article 19. 33 Rehabilitation International (n 2) (6th session) entry for 5 August 2005 on Draft Article 19. 34 Report of the Ad Hoc Committee on its 6th session (n 20) Annex II para 66. See also, for a similar point made by Canada, Rehabilitation International (n 2) (6th session) entry for 6th August 2005 on Draft Article 19; and by the World Blind Union, Rehabilitation International (n 19) (7th session) entry for 17 January 2006 on Draft Article 9. 35 See eg Disabled Peoples’ International et al (n 22) (4th session) entry for 1 June 2004 on Draft Article 19; Rehabilitation International (n 2) (6th session) entry for 5 August 2005 on Draft Article 19; and Rehabilitation International (n 19) (7th session) entry for 17 January 2006 on Draft Article 9; see also Report of the Ad Hoc Committee on its 6th session (n 20) Annex II para 69. 36 A point to which the chair drew attention when requesting that delegates consider this issue— Rehabilitation International (n 2) (6th session) entry for 5 August 2005. 37 Rehabilitation International (n 2) (6th session) entry for 5 August 2005.
lawson
266
Accessibility
public.38 Interestingly, both housing and workplaces are explicitly mentioned in the final text of article 9. Additional discussion concerning the scope of article 9 focused on a range of issues. Attention was drawn, for instance, to the importance of highlighting the relevance of this provision to rural as well as urban areas.39 The importance of including public transport and the full range of transport modes was stressed by a number of delegations, including Korea,40 Chile,41 and Panama.42 Finally, many interventions drew attention to the importance of including the accessibility of emergency and evacuation procedures within the article.43
2.4 Nature of the Obligation The final major theme which can be identified in the Ad Hoc Committee’s discussions which led to article 9 was the nature of the obligations created by the article. One strand of this discussion focused on draft article 19(2)(e) of the Working Group’s version of the text (eventually article 9(2)(b) of the CRPD) and, in particular, whether the CRPD should impose a stronger obligation on states in relation to the private sector, rather than ‘encourage’ it to comply with accessibility standards and guidance. Reluctance to move from the wording of ‘encouragement’ to that of ‘compulsion’ was expressed by Japan in the third session of the Ad Hoc Committee44—given that commitments made in international treaties were made by states and not the private sector. However, strong interventions in favour of language which would oblige states to require, and not just encourage, accessibility by private sector entities (particularly when providing services or facilities open to the public) were made by, for example, Kenya,45 Kuwait,46 Costa Rica,47 and the EU.48 In response, the chair suggested replacing ‘encourage’ with ‘ensure’ in the version of the text compiled prior to the seventh session of the Ad Hoc Committee49—wording which survived into the final text. Another point which is worthy of note is the frequent assertions that many of the obligations imposed by the accessibility article would be subject to progressive realization. As the report of the sixth session states: The Chair noted that the idea of progressive implementation had been brought up again. Accessibility is an economic, social, and cultural right, and so progressive realization would be 38 See, in particular, Rehabilitation International (n 19) (7th session) entry for 17 January 2006 on Draft Article 9. Note also that, in his summing up of this discussion, the chair stated that further consideration of private housing and private workplaces would be required—but that further discussion of these issues does not appear in the summaries of the Committee’s 8th session provided by Disabled Peoples’ International (‘Disability Convention Daily Updates’ (8th session), which suggests that agreement was reached on these issues through informal discussion). 39 See eg the contributions of Mexico and the International Disability Caucus in Rehabilitation International (n 19) (7th session) entry for 17 January 2006 on Draft Article 9. 40 Disabled Peoples’ International et al (n 22) (4th session) entry for 1 June 2004 on Draft Article 19. 41 Rehabilitation International (n 2) (6th session) entry for 5 August 2005 on Draft Article 19. 42 Rehabilitation International (n 19) (7th session) entry for 17 January 2006 on Draft Article 9. 43 See, in particular, Rehabilitation International (n 2) 6th session) entry for 5 August 2005 on Draft Article 19; and Rehabilitation International (n 19) (7th session) entry for 17 January 2006 on Draft Article 9. 44 Landmine Survivors Network (n 19) (3rd session) entry for 1 June 2004 on Draft Article 19. 45 46 ibid. ibid. 47 Rehabilitation International (n 2) (6th session) entry for 5 August 2005 on Draft Article 19. 48 ibid. 49 Letter from the chair to all members of the Committee (n 16)—in particular para 48.
lawson
Article 9
267
appropriate; however, there are also elements of a civil and political right, freedom of expression; therefore Article 19 is something of a hybrid.50
Thus, there was ‘clear agreement that this article is subject to progressive implementation’. There was, however, some debate about whether this should be articulated within the article itself or left to a separate provision. In the third session of the Ad Hoc Committee, Kuwait suggested adding a new subparagraph to draft article 19(1) to the effect that states parties would ‘formulate and implement plans to progressively reduce and eliminate barriers to accessibility for persons with disabilities with respect to existing public buildings’; and China suggested inserting into draft article 19(1) the phrase ‘appropriate measures’ and ‘to the maximum extent of the available resources’.51 Thailand, by contrast, took the view that although progressive realisation was important in the context of accessibility, it would be best dealt with outside draft article 1952—a view on which the report of the fourth session of the Ad Hoc Committee recognized that there was agreement.53 Whilst there appeared to be no dissent from the view that accessibility was predominantly a right requiring progressive realisation, there were attempts (eg by the International Disability Caucus and Israel) to build into the article provisions which would categorize failure to comply as a form of discrimination. Serbia and Montenegro urged caution about categorizing non-compliance with the accessibility provision as disability discrimination (which is not subject to progressive realization), fearing that this could prove burdensome,54 and several other delegations drew attention to the fact that accessibility was subject to progressive realization.55 According to the records of the seventh session of the Ad Hoc Committee: The Chair noted . . . the dichotomy between the application of progressive realization to accessibility and the notion that noncompliance constitutes discrimination. Anti-discrimination measures require immediate implementation. There appears to be consensus that accessibility is subject to progressive realization and it would therefore create a contradiction within the text to indicate that failure to provide accessibility equals discrimination.56
Chile suggested, by way of compromise, that the article could instead refer to ‘sanctions, oversight or control according to national law’.57 Summing up this discussion in the seventh session, the chair observed that: There was both support and concern regarding the equating of noncompliance with discrimination, thus this subject would require further discussion.58
A related issue which attracted debate in the seventh session of the Ad Hoc Committee, was the proposal (by the EU) to include within draft article 9 a reference to reasonable accommodation as a means through which to achieve accessibility. This attracted some support (eg from New Zealand). However, it also attracted concern—particularly from Australia, according to which: . . . reasonable accommodation is a fundamental mechanism by which discrimination is overcome. Article 5 on Equality and Non-discrimination includes reasonable accommodation and applies Rehabilitation International (n 2) (6th session) entry for 5 August 2005 on Draft Article 19. Landmine Survivors Network (n 19) (3rd session) entry for 1 June 2004 on Draft Article 1. 52 ibid. 53 Report of the Ad Hoc Committee on its 4th session (n 25), Annex II, para 7. See also Report of the Ad Hoc Committee on its 6th Session (n 20) Annex II, para 5. 54 Rehabilitation International (n 19) (7th session) entry for 7 January 2006 on Draft Article 9. 55 56 57 58 ibid eg New Zealand and Liechtenstein. ibid. ibid. ibid. 50 51
lawson
268
Accessibility
to all articles in this convention. It should not be used to qualify obligations that are considered too onerous: that devalues this critical concept as a concession or a compromise. Furthermore, including express mention of reasonable accommodation in some places undermines its implicit application to all circumstances.59
3. Paragraph 9(1) 3.1 ‘To enable persons with disabilities to live independently and participate fully in all aspects of life’ Article 9 begins with this phrase—which articulates the reason why accessibility is such an important matter for disabled people. General Comment No 2 of the CRPD Committee, which concerns article 9, opens in similar vein, stating that: Accessibility is a precondition for persons with disabilities to live independently and participate fully and equally in society. Without access to the physical environment, to transportation, to information and communication, including information and communications technologies and systems, and to other facilities and services open or provided to the public, persons with disabilities would not have equal opportunities for participation in their respective societies.60
The reference in article 9(1) to ‘enabl[ing] persons with disabilities to live independently and participate fully in all aspects of life’ has clear resonance with other provisions in the Convention and helps to draw attention to the cross-cutting nature of accessibility. Foremost amongst these other provisions is article 19, the title of which is ‘Living independently and being included in the community’. Also of particular relevance is the reference to accessibility in article 3,61 which recognizes accessibility as one of the general principles of the Convention, thus underpinning and embedding its cross-cutting role throughout the treaty. Although the classic focus of campaigns for independent living has been the support and inclusive accessible structures and systems that enable people with disabilities to live in the community on an equal basis with others, the CRPD Committee has used the term ‘independent living’ in a broader sense—applying it also in contexts of detention. Thus, in X v Argentina,62 prior to finding that article 9(1) had been breached, the Committee stated that: . . . States Parties must take all relevant measures . . . so that persons with disabilities who are deprived of their liberty may live independently and participate fully in all aspects of daily life in their place of detention; such measures include ensuring their access, on an equal basis with others, to the various areas and services, such as bathrooms, yards, libraries, study areas, workshops and medical, psychological, social and legal services.63
Similarly, in both Beasley v Australia,64 and Lockrey v Australia,65 the CRPD Committee acknowledged that, in countries with jury systems, ‘the performance of jury duty is an
ibid. CRPD Committee, General Comment No 2 ‘Article 9: Accessibility’ UN Doc CRPD/C/GC/2 (11 April 2014) (hereafter General Comment No 2) para 1. 61 62 63 Art 3(f ). CRPD Committee (n 7). ibid para 8.5. 64 65 CRPD Committee (n 9). CRPD Committee (n 10). 59 60
lawson
Article 9
269
important aspect of civic life within the meaning of article 9(1), as it constitutes a manifestation of active citizenship’.66 Importantly, achieving accessibility for ‘persons with disabilities’ requires achieving it for all such persons. The CRPD Committee has, in various concluding observations, expressed concern that this is not happening—accessibility initiatives being focused on ensuring physical accessibility without adequately tackling information and communication and without taking into account the need to ensure accessibility for people with sensory, intellectual, or psychosocial impairments.67 The importance of taking into account ‘the diversity of persons with disabilities’ and ensuring that accessibility is ‘provided to persons of any gender and of all ages and types of disability’, including those who ‘need human or animal assistance’, is stressed in General Comment No 2.68 This requires attention to be given to the accessibility of facilities and services used only or primarily by intersectional groups. For example, for women with disabilities, General Comment No 3 of the CRPD Committee notes that: The lack of consideration of gender and/or disability aspects in policies relating to the physical environment, to transportation, to information and communications, including information and communications technologies and systems, and to other facilities and services open or provided to the public, both in urban and in rural areas, prevents women with disabilities from living independently and participating fully in all areas of life on an equal basis with others. This is specially relevant in their access to safe houses, support services and procedures in order to provide effective and meaningful protection from violence, abuse and exploitation or when providing health care, particularly reproductive health care.69
The importance of ensuring accessibility of facilities and services relevant to children with disabilities has been stressed by the CRPD Committee70 and also the Committee on the Rights of the Child.71
3.2 ‘Appropriate Measures to Ensure’ Examples of specific types of measures that states must take in order to carry out their obligations under article 9 are set out in article 9(2) and considered in detail below. At this stage, however, it is important to reflect on measures that, although not made explicit in article 9, are (according to the CRPD Committee72) essential for its effective implementation. These relate to the establishment of strategies, planning and These words appear in para 8.6 in both cases. See eg CRPD Committee, ‘Concluding Observations on the Initial Report of Belgium’ UN Doc CRPD/ C/BEL/CO/1 (28 October 2014) para 21; Costa Rica UN Doc CRPD/C/CRI/CO/1 (12 May 2014) para 19; Croatia UN Doc CRPD/C/HRV/CO/1 (17 April 2015) para 15; Ethiopia UN Doc CRPD/C/ETH/CO/1 (31 August 2016) para 19; Mongolia UN Doc CRPD/C/MNG/CO/1 (17 April 2015) para 17; Paraguay UN Doc CRPD/C/PRY/CO/1 (15 May 2013) para 23; and United Arab Emirates UN Doc CRPD/C/ARE/CO/ 1 (22 August 2016) para 19. 68 General Comment No 2 (n 60) para 29. 69 CRPD Committee, General Comment No 3 ‘Article 6: Women and Girls with Disabilities’ UN Doc CRPD/C/GC/3 (2 September 2016) para 48. 70 See eg CRPD Committee, General Comment No 4 ‘Article 24: Right to Inclusive Education’ UN Doc CRPD/C/GC/4 (2 September 2016) para 21. 71 CRC Committee, ‘General Comment No 9 on the Rights of Children with Disabilities’ UN Doc CRC/ C/GC/9 (27 February 2007) para 39; and ‘General Comment No 17 on the Right of the Child to Rest, Leisure, Play, Recreational Activities, Cultural Life and the Arts’ UN Doc CRC/C/GC/17 (7 April 2013). 72 As demonstrated by guidance set out in General Comment No 2 (discussed below) and also by repeated recommendations to this effect made in the Committee’s concluding observations in relation to Art 9. 66 67
lawson
270
Accessibility
monitoring frameworks concerning accessibility, largely derived from requirements set out more explicitly elsewhere in the Convention—particularly article 4 on general obligations, article 5 on equality and non-discrimination, article 31 on data and statistics and article 33 on implementation and monitoring frameworks. According to General Comment No 2: States Parties should adopt action plans and strategies to identify existing barriers to accessibility, set time frames with specific deadlines and provide both the human and material resources necessary to remove the barriers. Once adopted, such action plans and strategies should be strictly implemented.73
As part of these accessibility plans and strategies states parties should ‘clearly prescribe the duties of the different authorities (including regional and local authorities) and entities (including private entities) that should be carried out in order to ensure accessibility’ and ‘prescribe effective monitoring mechanisms to ensure accessibility and monitor sanctions against anyone who fails to implement accessibility standards’.74 The General Comment also contains guidance on the monitoring mechanisms which should underpin accessibility strategies and action plans.75 It went on to say that: It is crucial that the bodies established further to article 33 are duly consulted when measures for the proper implementation of article 9 are considered. Those bodies should be provided with meaningful opportunities to, inter alia, take part in the drafting of national accessibility standards, comment on existing and draft legislation, submit proposals for draft legislation and policy regulation, and participate fully in awareness-raising and educational campaigns.76
The General Comment refers to the relevance of the general obligation to accessibility (set out in article 4(1)(b) of the CRPD) to take ‘all appropriate measures, including legislation, to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities’.77 A clear first priority for action, according to the General Comment, is to review the extent to which accessibility requirements are currently embedded in legislation (eg relating to discrimination, procurement, employment, and education) and, where necessary, take steps to address gaps.78 The General Comment goes on to note that this process of embedding accessibility into legislation involves a two-pronged approach. It requires accessibility to be mainstreamed into laws dealing with issues such as ‘construction and planning’, ‘public aerial, railway, road and water transport’, and ‘information and communication’.79 It also requires accessibility to be made the subject of ‘laws on equal opportunities, equality and participation in the context of the prohibition of disability-based discrimination’80 so that ‘[d]enial of access’ is ‘clearly defined as a prohibited act of discrimination’.81 However, as acknowledged by Don McKay during the Ad Hoc Committee discussions,82 categorizing every form of accessibility barrier as unlawful discrimination would be inconsistent with recognition of the need to plan for and achieve accessibility of existing buildings, structures, or products in a way that is gradual or progressive. The General Comment goes on
74 75 General Comment No 2 (n 60), para 33. ibid para 24. ibid para 33. 77 78 79 ibid para 48. ibid para 23. ibid para 28. ibid para 29. 80 81 ibid. ibid. 82 Rehabilitation International (n 19) (7th session) entry for 7 January 2006, on Draft Article 9. 73 76
lawson
Article 9
271
to provide further clarification of the situations in which lack of accessibility should be defined as discrimination, as follows: As a minimum, the following situations in which lack of accessibility has prevented a person with disabilities from accessing a service or facility open to the public should be considered as prohibited acts of disability-based discrimination: (a) Where the service or facility was established after relevant accessibility standards were introduced; (b) Where access could have been granted to the facility or service (when it came into existence) through reasonable accommodation.83
In terms of timeframes, the General Comment insists that: A clear distinction should be drawn between the obligation to ensure access to all newly designed, built or produced objects, infrastructure, goods, products and services and the obligation to remove barriers and ensure access to the existing physical environment and existing transportation, information and communication, and services open to the general public.84
Thus, in relation to making existing structures, services and environments accessible, the expectation is that progress will be made ‘gradually in a systematic and, more importantly, continuously monitored manner, with the aim of achieving full accessibility’.85 The Committee notes that this entails establishing ‘definite time frames’ and allocating ‘adequate resources for the removal of existing barriers’86 as part of a strategy through which definite progress can be achieved. This requires an ‘analysis of the situation to identify the obstacles and barriers that need to be removed’ which should be ‘carried out in an efficient manner and within a short-to mid-term framework’.87 The General Comment also specifies that the CRPD does ‘not allow’ states ‘to use austerity measures as an excuse to avoid ensuring gradual accessibility for persons with disabilities’.88 Whilst this process of gradual implementation sounds very much like ‘progressive realization’, that term is used nowhere in this General Comment. This is regrettable as it distances the implementation of article 9 from the valuable guidance on progressive realization issued by other UN human rights bodies—in particular the CESCR.89 It is also surprising given the clear consensus in the Ad Hoc Committee discussions about the relevance of progressive realization to accessibility. The Committee’s jurisprudence has done little to enhance clarity on the relationship between article 9 and progressive realization. Indeed, the Committee’s views in Nyusti and Takács v Hungary90 appear to exacerbate, rather than reduce, confusion and uncertainty. The case concerned inaccessible automatic teller machines (ATMs) which had been used by a privately owned bank (the OTP) before Hungary’s ratification of the
83 General Comment No 2 (n 60) para 31. For interesting analysis of the extent to which disability discrimination law addresses accessibility barriers in a range of jurisdictions, see Maria Ventegodt Liisberg, ‘Accessibility of Services and Discrimination: Concentricity, Consequence and the Concept of Anticipatory Reasonable Adjustment’ (2015) 15 International Journal of Discrimination and the Law 123. 84 85 86 General Comment No 2 (n 60) para 24. ibid para 14. ibid para 24. 87 88 ibid para 27. ibid para 25. 89 CESCR, General Comment No 3, ‘The Nature of States Parties Obligations’ UN Doc E/1991/23 (14 December 1990). 90 CRPD Committee (n 6). For critical commentary on this case, see Oliver Lewis, ‘Case Comment: Nyusti and Takács v Hungary: Decision of the UN Committee on the Rights of Persons with Disabilities’ (2013) European Human Rights Law Review 419; and Anna Lawson, ‘Accessibility Obligations in the United Nations Convention on the Rights of Persons with Disabilities: Nyusti and Takács v Hungary’ (2014) 30 South African Journal on Human Rights 380.
lawson
272
Accessibility
CRPD. Given that the challenge focused on making existing infrastructure accessible (as opposed to ensuring the accessibility of new products or systems), General Comment No 2 indicates that progress toward achieving accessibility may be gradual rather than immediate. This would suggest that, in order to establish a breach, there would need to be an element of process failure—in the form, for instance, of failure to adopt an effective plan, or to resource or monitor an accessibility strategy sufficiently.91 However, the Committee appears to have based its finding of breach of article 9 simply on the fact that the ATMs were not accessible at the relevant date—thus applying an outcome rather than a process- oriented approach.92 Thus, in the Committee’s words: While giving due regard to the measures taken by the State party to enhance the accessibility of the ATMs operated by OTP and other financial institutions for persons with visual and other types of impairments, the Committee observes that none of these measures have ensured the accessibility to the banking card services provided by the ATMs operated by OTP for the authors or other persons in a similar situation. The Committee finds accordingly that the State party has failed to comply with its obligations under Article 9, paragraph 2 (b), of the Convention.93
Again, no clarity was provided by Beasley v Australia94 and Lockrey v Australia.95 In both of these cases, the CRPD Committee found that article 9 had been breached—in Beasley because of a failure to provide sign language interpretation to enable a deaf person to participate in jury service and in Lockrey because of a failure to provide a stenographer to enable a deaf person to participate in jury service. In both cases, observations are made to the following effect: The Committee also recalls that, according to its general comment No 2, . . . the access should be ensured on an equal basis in an effective manner, in accordance with the prohibition of discrimination; and the denial of access should be considered to constitute a discriminatory act.96
Unhelpfully, this suggests that all failures to ensure accessibility constitute unlawful discrimination—an approach which would leave no room for progressive realization. Finally, in this context, it should be noted that the implementation of article 9 is an issue which has proved challenging for states parties. As the CRPD Committee notes in General Comment No 2: One common challenge has been the lack of an adequate monitoring mechanism to ensure the practical implementation of accessibility standards and relevant legislation. In some States Parties, monitoring was the responsibility of local authorities that lacked the technical knowledge and the human and material resources to ensure effective implementation. Another common challenge has been . . . insufficient involvement of persons with disabilities and their representative organizations in the process of ensuring access to the physical environment, transport, information and communication.97
91 See generally, Edward Anderson and Marta Foresti, ‘Assessing Compliance: The Challenges for Economic and Social Rights’ (2009) 1 Journal of Human Rights Practice 469; and Brian Griffey, ‘The “Reasonableness” Test: Assessing Violations of State Obligations under the Optional Protocol to the International Covenant on Economic, Social and Cultural Rights’ (2011) 11 Human Rights Law Review 275. 92 For further discussion of this point, see Lawson, ‘Accessibility Obligations’ (n 90) 380. 93 CRPD Committee, Nyusti and Takács v Hungary (n 6) para 9.6; see, for further discussion of this point, Lawson, ‘Accessibility Obligations’ (n 90). 94 95 CRPD Committee (n 9). CRPD Committee (n 10). 96 Beasley v Australia (n 9) para 8.6; virtually identical words also appear in Lockrey v Australia (n 10) para 8.6. 97 General Comment No 2 (n 60) para 10; see also, for analysis of accessibility strategies in European countries, Anna Lawson, Maximising the Impact and Effectiveness of Accessibility Measures for Goods and Services: Learning from National Experience (Academic Network of European Disability Experts 2012).
lawson
Article 9
273
3.3 ‘Access, on an Equal Basis with Others’ Interestingly, article 9(1) is framed, not in terms of ensuring accessibility, but in terms of ensuring ‘access . . . to’ the built environment, transport, information, communications, and ICT ‘on an equal basis’ with others—although the examples of measures which should be taken to implement the article all focus on accessibility. Clearly, access to places, services, and environments is frequently denied because of lack of accessibility. Disability-oriented campaigns for enhanced accessibility have therefore often been framed as campaigns for enhanced access to services, facilities, and places open to the rest of the population. The CRPD Committee explains that: Historically, the persons with disabilities movement has argued that access to the physical environment and public transport for persons with disabilities is a precondition for freedom of movement, as guaranteed under article 13 of the Universal Declaration of Human Rights and article 12 of the International Covenant on Civil and Political Rights. Similarly, access to information and communication is seen as a precondition for freedom of opinion and expression, as guaranteed under article 19 of the Universal Declaration of Human Rights and article 19, paragraph 2, of the International Covenant on Civil and Political Rights.98
The right to have ‘access to’ public facilities, services, and spaces appeared in pre-existing human rights treaties. Indeed, these provisions are highlighted in General Comment No 2 by the CRPD Committee because of the important role they play in laying the foundations for article 9. The provisions in question are article 25(c) of the International Covenant on Civil and Political Rights (ICCPR) and article 5(f ) of the International Covenant for the Elimination of all forms of Racial Discrimination (ICERD). According to the former, every ‘citizen shall have the right and the opportunity’ to have ‘access, on general terms of equality, to public service in his country’ and, according to the latter: . . . States Parties undertake to prohibit and to eliminate racial discrimination in all its forms and to guarantee the right of everyone, without distinction as to race, colour, or national or ethnic origin, to equality before the law, notably in the enjoyment of the following rights: . . . (f ) The right of access to any place or service intended for use by the general public, such as transport hotels, restaurants, cafes, theatres and parks.
The CRPD Committee, in General Comment No 2, notes that this ICCPR provision: could serve as a basis to incorporate the right of access into the core human rights treaties’ and that this ICERD provision establishes ‘a precedent . . . in the international human rights legal framework for viewing the right to access as a right per se’.99
It concludes that these provisions ‘clearly establish the right of access as part of international human rights law’ and advises that accessibility ‘should be viewed as a disability- specific reaffirmation of the social aspect of the right of access’.100 The meaning of ‘accessibility’ within article 9 will be discussed below. For present purposes, however, it is worthy of note that it appears to bear a meaning narrower than that of the phrase ‘access to’. In other words, while a right to have ‘access to’ places, services and facilities open to the public would require them to be ‘accessible’, it would also require that access was not denied for reasons other than lack of accessibility—for example, by virtue of directly discriminatory rules expressly prohibiting entry to people on the General Comment No 2 (n 60) para 1.
98
ibid para 3.
99
100
ibid para 4.
lawson
274
Accessibility
basis of personal characteristics. This point is touched on in General Comment No 2, according to which: Admittedly, for members of different racial or ethnic groups, the barriers to free access to places and services open to the public were the result of prejudicial attitudes and a readiness to use force in preventing access to spaces that were physically accessible.101
Nevertheless, the Committee does not go on to consider whether article 9 has any role to play in requiring ‘access to’ facilities, services, and environments beyond accessibility. This question may perhaps depend on how the term ‘accessibility’ is understood and interpreted. It is nevertheless an interesting question which is worth pondering.
3.4 ‘Physical Environment’ Prior to the CRPD, the accessibility of the ‘physical environment’ had been highlighted as an area for priority action under Rule 5 of the Standard Rules on the Equalisation of Opportunities for Persons with Disabilities.102 Article 9(1)(a) provides some examples of the types of contexts within which the obligations under article 9 must be carried out. These include a number of examples which consist, at least in part, of physical environments—ie ‘buildings, roads, transportation and other indoor and outdoor facilities, including schools, housing, medical facilities and workplaces’. In X v Argentina, the CRPD Committee was prepared to find a breach of article 9(1)(a) and (b) because the state party had not produced sufficient evidence to rebut the argument that X, a prisoner and a wheelchair user, had been prevented by barriers in the physical environment from using, in a manner that was ‘independent (insofar as possible)’, the ‘bathroom and shower, recreation yard and nursing service’.103 The Committee observes in this connection that the state party had not asserted that there were any obstacles that prevented it from taking the necessary measures to facilitate the author’s mobility or denied his allegations. At the domestic level, two Spanish cases have relied on article 9 CRPD to require that property owners make their premises accessible. These cases indicate that article 9 is being interpreted to create immediately applicable obligations on private individuals akin to obligations not to discriminate. In the first of these cases, the Supreme Court relied on article 9 to set aside the refusal by owners of an apartment building to allow a hoist (enabling a disabled person to use a communal swimming pool) to be installed.104 In the second, the Barcelona Provincial High Court required owners of an apartment building to install an elevator to make the property accessible to disabled residents.105 Russian courts have also referred to article 9 in the context of the built environment. In Sergiyenko v the Belgorod Regional Department of the Federal Bailiff Service,106 it was held that article 9 did not render it unlawful for a bailiff’s office to be located on the fifth floor of a building without an elevator because it had not been proved that the claimant could not access the services provided by the office even though he was not physically able to reach the fifth floor. Universal design was described as ‘legally binding’ at the time of
102 ibid para 3. UNGA Res 48/96 (4 March 1994) annex. X v Argentina (n 7) para 8.5. 104 Civil Chamber of the Supreme Court, Judgment 619/2013 (10 October 2013) second point of law. 105 Barcelona Provincial High Court, Judgment 202/2015 (12 May 2015). 106 Judgment of the Oktyabrskiy District Court of Belgorod (17 April 2014) case no 2-1664/2014. 101 103
lawson
Article 9
275
construction—the process of design and construction being one which should achieve a ‘living environment with unobstructed access [for] persons with disabilities . . . to buildings and facilities . . . without the need for further restructuring and adaptation’.107 This obligation was not breached in the case in question, presumably because the building had already been constructed. In another Russian case—Shitikov v Absent Ltd 108—reference was again made to article 9 and it was stressed that private entities offering facilities and services open to the public must take into account all aspects of accessibility for disabled people. The claimant (a wheelchair user) argued that a café should install a ramp to enable him to have access to its services. However, the court dismissed the claim, ruling that it would be sufficient for the café to install a button to allow the plaintiff to call for assistance. Thus, like the Spanish cases considered above, this case seems to suggest that article 9 was understood to impose obligations of immediate effect—including on private actors—but that this obligation is subject to limits of reasonableness. The result is an understanding of article 9 as including (but perhaps not being limited to) duties which appear very similar to, if not the same as, reasonable accommodation duties. The term ‘physical environment’ appears both to encompass and extend beyond the ‘built environment’. General Comment No 2 contains the following reflection on accessibility barriers in the built environment: . . . persons with disabilities face technical and environmental— in most cases, human- built environmental—barriers such as steps at the entrances of buildings, the absence of lifts in multi- floor buildings and a lack of information in accessible formats. The built environment always relates to social and cultural development as well as customs; therefore the built environment is under the full control of society. Such artificial barriers are often the result of a lack of information and technical know-how rather than a conscious will to prevent persons with disabilities from accessing places or services intended for use by the general public.109
Beyond the built environment, article 9 also addresses ‘access . . . to the natural and heritage parts of the physical environment that the public can enter and enjoy’.110 A number of concluding observations of the CRPD Committee contain explicit recommendations about ensuring the accessibility of green spaces.111 Interestingly, these are all relatively recent (none occur before 2016) and all include reference to the link between article 9 of the CRPD and the Sustainable Development Goals (in particular goal 11).
3.5 ‘Information and Communications, Including Information and Communications Technologies and Systems’ These words appear in article 9(1) and emphasize that these issues lie centrally within the scope of article 9. They have featured in virtually all of the CRPD Committee’s ibid. Judgment of the Promyshlennyi District Court of Smolensk (18 December 2013) case no 2-3339/2013. 109 General Comment No 2 (n 60) para 3. 110 ibid para 16; see, for an example of a recent UK analysis of the impact on disabled people of the built environment (and recommendations for reform), House of Commons’ Women and Equalities Committee, ‘Building for Equality: Disability and the Built Environment’, Ninth report of session 2016–2017’ (Stationery Office 2017). 111 See eg CRPD Committee, ‘Concluding Observations on the Initial Report of Italy’ UN Doc CRPD/C/ ITA/CO/1 (31 August 2016) para 22; Portugal UN Doc CRPD/C/PRT/CO/1 (18 August 2016) para 22; and Thailand UN Doc CRPD/C/THA/CO/1 (12 May 2016) para 22. 107 108
lawson
276
Accessibility
comments on article 9 in concluding observations—with the accessibility of websites and media services, together with recognition of sign language and Braille, occupying particularly prominent positions. Information, communication, and ICT are the subject of a number of paragraphs of article 9(2), discussed below. Further, there is a strong connection, and indeed a significant overlap, between the article 9 obligations relating to information, communications and ICTs and those imposed by article 21 and also article 4(1)(g) and (h) of the CRPD. The existence of this degree of overlap reflects the particular significance of this issue—for inclusion in the society of today and also the societies of tomorrow.112 Its significance also explains its appearance as one of the five core thematic strands of the new Council of Europe Disability Strategy (2017–2023).113 The term ‘communications’ is defined in article 2 CRPD. The other terms are not defined in the CRPD itself. However, General Comment No 2 provides some guidance as to the meaning of ‘information and communications technologies’. According to this: . . . it is generally acknowledged that ICT is an umbrella term that includes any information and communication device or application and its content . . . such as radio, television, satellite, mobile phones, fixed lines, computers, network hardware and software.114
The accessibility of ICT was the focus of both Nyusti and Takács v Hungary115 in 2013 and F v Austria116 in 2015—in both of which the CRPD Committee found that article 9 had been breached. In the Nyusti case, Hungary was found to have taken inadequate steps to ensure that automatic teller machines (ATMs) in banks were accessible to people with visual impairments; and, in F v Austria, Austria was found to be in breach of article 9(1) (as well as article 9(2)) for failing to ensure that live audio information had been installed in parts of the tram network in Linz—with the result that blind passengers did not have access to information and transportation on an equal basis with other passengers. The accessibility of information and communications more broadly was the subject of Beasley v Australia117 and Lockrey v Australia.118 As mentioned above, both cases involved challenges brought against refusals to provide support to deaf people to participate in jury service. The support requested in each case was different—reflecting the fact that what makes communication accessible for some people with the same impairment may not do so for others. Accessibility therefore requires a range of communication methods and supports to be made available. At the domestic level, the impact of article 9 in relation to information has been interpreted expansively by Russian courts. In Tsurenko v the Ministry of Education of the Omsk Region,119 article 9 was described as ‘impl[ying] equal access to social benefits, including through access to information’. It then appears to have provided the basis for a ruling that the CRPD had been breached by a failure to provide information to a person with intellectual disabilities, who was living in a social care home, about their entitlement to apply for state supported housing. Article 9 seems to have been interpreted both to require that 112 See further Lazar and Stein (n 5), and Peter Blanck, eQuality: The Struggle for Web Equality by People with Cognitive Disabilities (CUP 2014). 113 Council of Europe Disability Strategy 2017– 2023— Human Rights: A Reality for All, available at: ; see also Anna Lawson, ‘Accessibility of Information, Technologies and Communication for Persons with Disabilities—Contribution to the Council of Europe Strategy on the Rights of Persons with Disabilities’ (March 2017). 114 115 General Comment No 2 (n 60) para 5. Nyusti and Takács (n 6). 116 117 118 F v Austria (n 8). Beasley v Australia (n 9). Lockrey v Australia (n 10). 119 Decision of Appeal of the Omskiy Oblast Court (18 December 2013) case no 33-8213/2013.
lawson
Article 9
277
information was made available (a requirement which does not emerge from a textual reading of article 9) and that the information provided was accessible. Finally, in the context of accessible information and communication, it is important to acknowledge the barriers often created by copyright laws (preventing the transcription or sharing of books in accessible formats) and the close relationship on this point between articles 9 and 30 of the CRPD, particularly para 3 of article 30. The World Intellectual Property Organization’s adoption of the Marrakesh Treaty to Facilitate Access to Published Works by People who are Blind, Visually Impaired, or Otherwise Print Disabled120 in 2013 considerably strengthens the potential for governments to work together to tackle such copyright barriers to accessible information.
3.6 ‘Other Facilities and Services Open or Provided to the Public’ The inclusion of the word ‘other’ in this phrase might suggest that the terms which appear earlier in the list (ie ‘physical environment’, ‘transportation’, ‘information and communications, including information and communications technologies’) are all types of facility or service open to the public. However, on closer examination, it appears that this is not in fact the case because of the reference in article 9(1)(a) to ‘housing’ and ‘workplaces’ which are not, in any conventional sense, ‘open to the public’. Further, and unlike the draft of the CRPD compiled by the chair before the Ad Hoc Committee’s seventh session, there is nothing in the article to indicate that only public housing or public sector workplaces are covered—and the Ad Hoc Committee discussions of these issues clearly suggest that article 9’s role should extend to prompting efforts to progressively enhance the accessibility of privately owned housing stock and private as well as public sector workplaces. While virtually all references to article 9 in the CRPD Committee’s concluding observations refer to the need to enhance the accessibility of buildings, the vast majority do not explicitly mention housing or workplaces. In relation to housing, however, explicit recommendations to enhance the accessibility of housing stock are made in the concluding observations on Lithuania121 and New Zealand—the latter focusing specifically on ‘new future private houses’.122 The New Zealand concluding observations are also one of the two examples of the Committee including, in its observations on article 9, explicit mention of the accessibility of workplaces—in the form of a recommendation that New Zealand discontinue its exemption from accessibility requirements for ‘factories and industrial premises where fewer than ten people are employed’.123 Turning now to the terms ‘facilities’ and ‘services’, as mentioned above, article 9(1)(a) specifies that the article is applicable to: Buildings, roads, transportation and other indoor and outdoor facilities, including schools, housing, medical facilities and workplaces. 120 VIP/DC/8 (31 July 2013); for further discussion, see Laurence R Helfer, Molly K Land, Ruth L Okediji, and Jerome H Reichman, The World Blind Union Guide to the Marrakesh Treaty: Facilitating Access to Books for Print-Disabled Individuals (OUP 2017). 121 CRPD Committee, ‘Concluding Observations on the Initial Report of Lithuania’ UN Doc CRPD/C/ LTU/CO/1 (11 May 2016) para 22. 122 CRPD Committee, ‘Concluding Observations on the Initial Report of New Zealand’ UN Doc CRPD/ C/NSL/CO/1 (31 October 2014) para 20. 123 ibid; explicit mention is also made of workplaces (in connection with Art 9) in the Committee’s ‘Concluding Observations on the Initial Report of the Republic of Korea’ UN Doc CRPD/C/KOR/CO/1 (29 October 2014) para 18.
lawson
278
Accessibility
In addition, article 9(1)(b) provides that it applies to: Information, communications and other services, including electronic services and emergency services.
General Comment No 2 supplements these lists by indicating that ‘other indoor and outdoor facilities’ include: law enforcement agencies, tribunals, prisons, social institutions, areas for social interaction and recreation, cultural, religious, political and sports activities, and shopping establishments. Other services . . . include postal, banking, telecommunication and information services.124
The phrase ‘open or provided to the public’ makes it clear that the reach of article 9 is determined by reference to whether a facility or service is open to the public, rather than by reference to whether it is publicly or privately owned. As General Comment No 2 puts it: As long as goods, products and services are open or provided to the public, they must be accessible to all, regardless of whether they are owned and/or provided by a public authority or a private enterprise. Persons with disabilities should have equal access to all goods, products and services that are open or provided to the public in a manner that ensures their effective and equal access and respects their dignity.125
The reference by the CRPD Committee to ‘goods, products and services’ here, instead of ‘facilities and services’, is rather puzzling. Neither the term ‘goods’ nor ‘products’ is used anywhere in article 9. Clearly, where facilities or services (or indeed transportation, information, communications and ICTs) involve goods or products, article 9 will require those goods or products to be accessible. Thus, it would require the accessibility of equipment (such as mammogram machines and gynaecological examination beds) used as part of a health service.126 It is at least arguable, however, that, outside these situations, article 9(1) does not require states to ensure the accessibility of goods and products. The wording of General Comment No 2 seems, therefore, to go beyond the boundaries of article 9(1)—broad though those boundaries may be. The most likely explanation for this is that they are borrowed from article 4(1)(f ), according to which states parties are obliged: To undertake or promote research and development of universally designed goods, services, equipment and facilities, which should require the minimum possible adaptation and the least cost to meet the specific needs of a person with disabilities, to promote their availability and use, and to promote universal design in the development of standards and guidelines.
If this is indeed the inspiration for the wider wording used in General Comment No 2, then it requires explanation given the very different nature of the obligations set out in article 4(1)(f )—which relate to carrying out research and promoting universal design— from those set out in article 9(1)—which concern ensuring equal access. No such explanation has yet been provided by the CRPD Committee.
125 General Comment No 2 (n 60) para 13. ibid. See also General Comment No 3 of the CRPD Committee (n 65) para 42.
124 126
lawson
Article 9
279
3.7 ‘Identification and Elimination of Obstacles and Barriers’ This is the only example of a type of measure which states must take in order to implement their article 9 obligations as specified in article 9(1)—other examples appearing instead in article 9(2). It is unsurprising that this type of measure is singled out for inclusion in article 9(1) given its fundamental significance to any strategic commitment to ensuring accessibility. Furthermore, whilst the need to involve and consult people with disabilities (through their representative organizations) applies to all aspects of article 9 (as required by article 4(3)), it is self-evident that any successful attempt to identify the accessibility barriers faced by people with disabilities must necessarily be based on the experiences and insights of those people themselves. According to General Comment No 2, an ‘analysis of the situation to identify the obstacles and barriers that need to be removed can be carried out in an efficient manner and within a short-to mid-term framework’.127 At first glance, this might be thought to suggest that a one-off exercise is envisaged. However, the on-going identification and elimination of accessibility barriers is key to the monitoring of progress toward accessibility and the General Comment attaches considerable importance to the establishment of effective and well-resourced monitoring systems. Thus, in the words of General Comment No 4 of the CRPD Committee: Accessibility is a dynamic concept and its application requires periodic regulatory and technical adjustments.128
3.8 ‘Accessibility’ The term ‘accessibility’ is not defined in the CRPD. Interestingly, in the draft elements of a text produced in December 2003 by the chair of the Ad Hoc Committee for discussion in the Working Group,129 the following definition appeared: ‘Accessibility’ means the measure or condition of things and services that can readily be reached or used by people including those with disabilities, which could be achieved, through inclusive and universal design or adaptation and by legal and programmatic means, in order to promote their access to the physical environment, public transportation and information and communication, including information, communication and assistive technologies, and to societal structures and decision-and policy-making processes.
In the text compiled by the Working Group in January 2004,130 however, whilst ‘accessibility’ appears as a heading in the definition article, no definition is included and an accompanying note reads: The need for a definition of ‘accessibility’ and the content of any definition will depend on the outcome of the discussion in the Ad Hoc Committee on draft Article 19 on accessibility.131 128 General Comment No 2 (n 60) para 27. General Comment No 4 (n 70) para 21. Chair’s ‘Draft Elements of a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (December 2003) prepared for discussion by the Ad Hoc Committee Working Group on Article 2(1). This definition appears to draw heavily on a similar one included in the Bangkok Recommendations (n 17) para 14. 130 Report of the Working Group to the Ad Hoc Committee (n 15), Annex I, Draft Article 3. 131 ibid at fn 10. 127 129
lawson
280
Accessibility
Some support was expressed for including a definition of accessibility—either in the definitions article or the accessibility article—by members of the Ad Hoc Committee.132 The National Human Rights Institutions group urged that a definition would be helpful and suggested one along the following lines: The term ‘access’ is not an act or state, but a freedom to enter, to approach, to communicate with, to pass to or from, or make use of physical, environmental and societal structures, goods and services, systems and processes regardless of type and degree of disability, gender or age.133
Australia was one of the countries which argued against the inclusion of a definition but suggested that, if one were included, it should be ‘outcome based and be able to evolve as interpretation of technology develops’.134 In the text compiled by the chair and published as an annex to the report of the seventh session of the Ad Hoc Committee, accessibility was not defined in draft article 2 and, in the accompanying commentary on the text, the chair notes that: We have not discussed a definition for ‘Accessibility’, and I suggest that we do not need one. We have a separate article on this.135
Whilst the absence of a definition of accessibility avoids the risk of imposing an ossifying rigidity on the concept, it generates a risk of confusion or lack of clarity.136 One particular source of potential confusion is the fact that the term ‘accessible’ is one that is used in other human rights contexts, in a sense that appears to be broader than the way in which it is generally used in the CRPD. Thus, in General Comment 14 of the CESCR, accessibility is explained in the following way: Accessibility has in general four overlapping dimensions : Non-discrimination: health facilities, goods and services must be accessible to all, especially the most vulnerable or marginalized sections of the population, in law and in fact, without discrimination on any of the prohibited grounds. Physical accessibility: health facilities, goods and services must be within safe physical reach for all sections of the population, especially vulnerable or marginalized groups, such as ethnic minorities and indigenous populations, women, children, adolescents, older persons, persons with disabilities and persons with HIV/AIDS. Accessibility also implies that medical services and underlying determinants of health, such as safe and potable water and adequate sanitation facilities, are within safe physical reach, including in rural areas. Accessibility further includes adequate access to buildings for persons with disabilities. Economic accessibility (affordability): health facilities, goods and services must be affordable for all. Payment for health-care services, as well as services related to the underlying determinants of health, has to be based on the principle of equity, ensuring that these services, whether privately or publicly provided, are affordable for all, including socially disadvantaged groups. Equity demands that poorer households should not be disproportionately burdened with health expenses as compared to richer households.
132 See eg Disabled Peoples’ International et al (n 22) (4th session) entry for 23 August 2004 on Draft Article 3—Cuba, Chile, the International Disability Caucus, and NHRIs. 133 Rehabilitation International (n 2) (6th session) entry for 5 August 2005 on Draft Article 19. 134 Disabled Peoples’ International et al (n 22) (4th session) entry for 23 August 2004 on Draft Article 3. 135 Letter of the chair to all members of the Committee (n 16) para 16. 136 See, for a somewhat different perspective, Francesco Seatzu, ‘Article 9 [Accessibility]’ in Valentina Della Fina, Rachele Cera, and Giuseppe Palmisano (eds), The United Nations Convention on the Rights of Persons with Disabilities: A Commentary (Springer 2017) 225, 226–27.
lawson
Article 9
281
Information accessibility: accessibility includes the right to seek, receive and impart information and ideas concerning health issues. However, accessibility of information should not impair the right to have personal health data treated with confidentiality. 137
It seems clear that article 9 represents a more detailed disability-relevant articulation of some of these aspects of accessibility—particularly physical and information accessibility. What is less clear is how other elements of ‘accessibility’, as explained in the CESCR’s General Comment No 14 (eg ‘economic accessibility’) relate to the right to accessibility articulated in article 9 of the CRPD. This is not explained in General Comment No 2, although it is noted that the ‘significance of accessibility can be derived’ from this paragraph of General Comment No 14.138 In its General Comment No 4, however, the CRPD Committee appears to use the concept of accessibility to cover economic accessibility—stating that: Accessibility requires that education at all levels be affordable for students with disabilities.139
General Comment No 2 provides helpful guidance on the nature of the obligations under article 9 accessibility obligation in the context of distinguishing it from reasonable accommodation. According to this: Accessibility is related to groups, whereas reasonable accommodation is related to individuals. This means that the duty to provide accessibility is an ex ante duty. States Parties therefore have the duty to provide accessibility before receiving an individual request to enter or use a place or service. . . . obligation to implement accessibility is unconditional, i.e. the entity obliged to provide accessibility may not excuse the omission to do so by referring to the burden of providing access for persons with disabilities. The duty of reasonable accommodation, contrarily, exists only if implementation constitutes no undue burden on the entity.140
4. Paragraph 9(2) 4.1 Paragraph 9(2)(a)—‘Minimum Standards and Guidelines’ As mentioned above, article 9(2) sets out a list of examples of measures which states parties must take when implementing article 9. The first of these concerns minimum accessibility standards applicable, for example, to ‘service-providers, builders and other relevant stakeholders’.141 In line with article 4(3), these must be drawn up in consultation with organizations of persons with disabilities, which, according to the CRPD Committee, must be appropriately ‘supported’ so as to enable them to play a full part in the development, implementation, and monitoring of accessibility standards.142 As well as stressing the importance of involving disabled people’s organizations in the development of accessibility standards, the General Comment urges states to draw them up in such a way as to enhance transnational synergies. It thus suggests that standards should be ‘in accordance with the standards of other states parties in order to ensure interoperability’.143 To this end, it encourages states parties to develop such standards ‘in 137 CESCR, ‘General Comment No 14: The Right to the Highest Attainable Standard of Health (Art 12)’ UN Doc E/C12/2000/4 (11 August 2000) para 12(b). 138 139 General Comment No 2 (n 60) para 6. General Comment No 4 (n 70) para 23. 140 141 General Comment No 2 (n 60) para 25. ibid. 142 ibid para 47; see also paras 25 and 28. 143 ibid para 18; see also, for interesting insights into the EU-US dialogue on accessibility standards, Inmaculada Placencia, Martina Sindelar, Ileana Martinez, David Capozzi, and Terry Weaver, ‘EU-US ICT
lawson
282
Accessibility
collaboration with other states parties and international organizations’;144 to make use of ‘reference tools such as the ITU-T recommendation Telecommunications Accessibility Checklist for standardization activities (2006) and the Telecommunications accessibility guidelines for older persons and persons with disabilities (ITU-T recommendation F.790)’;145 and to ‘join ITU study groups in the radio-communication, standardization and development sectors of the Union, which actively work at mainstreaming accessibility in the development of international telecommunications and ICT standards and at raising industry’s and governments’ awareness of the need to increase access to ICT for persons with disabilities’.146 As well as requiring that minimum accessibility standards be developed, paragraph 9(2)(a) requires that steps be taken to ‘promulgate’ them and ‘monitor [their] implementation’.147 In its General Comment No 2, the CRPD Committee attaches great significance to mainstreaming accessibility standards by embedding them in a range of different types of regulatory systems and to making them compulsory.148 In its words, provision should be made for the ‘mandatory application of accessibility standards and for sanctions, including fines, for those who fail to apply them’.149 The importance of effective and enforceable minimum accessibility standards has also been stressed by the CRPD Committee in its jurisprudence. Thus, in both Nyusti and Takács v Hungary and F v Austria, general recommendations were made to the state party to the effect that minimum standards should guarantee the accessibility of banking and public transport, respectively; that they should be given effect through a legislative framework which laid down ‘concrete, enforceable and time-bound benchmarks for monitoring and assessing’ progress; and applied to all newly procured items to be used in delivering relevant services.150
4.2 Paragraph 9(2)(b) The words used in this heading are the full text of article 9(2)(b). The phrase ‘open or provided to the public’ has already been considered above and needs no further analysis here. The key focus of this section will therefore be the nature of the obligation to ‘ensure’ that relevant private entities take accessibility into account.151
Standardisation Dialogue on eAccessibility: Background and Achievements’ (2013) 3 European Yearbook of Disability Law 101. 144 General Comment No 2 (n 60) para 30; see also UN Department of Economic and Social Affairs, ‘Accessibility and Development’ (2013). 145 146 ibid. General Comment No 2 (n 60) para 30. 147 See further, for reflections on the impact of US law on the accessibility of ICT, and its use of accessibility standards, William Myhill, ‘Law and Policy Challenges for Achieving an Accessible eSociety: Lessons from the United States’ (2010) 2 European Yearbook of Disability Law 103; and, for reflections on accessibility and media regulation in a range of jurisdictions, Eliza Varney, Disability and Information Technology: A Comparative Study in Media Regulation (CUP 2013). 148 See eg General Comment No 2 (n 60) paras 24 and 28. 149 General Comment No 2 (n 60) para 28. 150 See in particular Nyusti and Takács (n 6) para 10(2)(a); and F v Austria (n 8) para 9(b)(i). 151 For recognition by the CESCR of the importance of treaty obligations on states to regulate and monitor the conduct of non-state actors (such as employers and service providers) see eg its general comments No 16, on the equal rights of men and women UN Doc E/C12/2005/4 (11 August 2005) para 20;No 18, on the right to work E/C12/GC/18 (6 February 2006) para 52; and No 20, on non-discrimination UN Doc E/C 12/GC/ 20 (22 July 2009) para 11.
lawson
Article 9
283
In its General Comment No 2, the CRPD Committee makes it clear that states are expected to develop mandatory minimum accessibility standards applicable to private entities providing facilities or services that are open to the public.152 It is also clear from the General Comment that private sector bodies should be subject to laws classifying various types of failure to provide accessibility as unlawful discrimination as well as other laws (eg on procurement or construction) which embed or mainstream accessibility requirements.153 This article 9(2)(b) obligation was the subject of Nyusti and Takács v Hungary154—in which the Committee found that Hungary was in breach of article 9 because of its failure to take sufficient steps to ensure that a private entity (the OTP Bank) was providing its ATM services in a way that was accessible to blind customers. It noted that the state party had endorsed the approach taken by the Hungarian Supreme Court—whereby the blind bank customers bringing the case were effectively barred from bringing a complaint about inaccessible bank machines because of their willingness to enter into a contractual relationship with the bank despite the fact that those machines were inaccessible at that time. Such an approach, according to the Committee, amounts to taking a position that ‘the obligation to provide for accessibility of information, communications and other services for persons with visual impairments on an equal basis with others does not apply to private entities, such as OTP, and does not affect contractual relationships’.155 Unsurprisingly, it was therefore held to be in breach of article 9(2)(b).
4.3 Paragraph 9(2)(c)—‘Training for Stakeholders’ According to the CRPD Committee, ‘a lack of accessibility is often the result of insufficient awareness and technical know-how’156 and a ‘common challenge’ in the effective implementation of article 9 is ‘the lack of training provided to the relevant stakeholders’.157 Training should be provided to those involved in the process of design, production,158 and also accessibility-monitoring.159 In General Comment No 2, the CRPD Committee provides guidance as to who should be considered ‘stakeholders’ for purposes of article 9(2)(c). According to it, the term includes ‘authorities that issue building permits, broadcasting boards and ICT licences, engineers, designers, architects, urban planners, transport authorities, service providers, members of the academic community and persons with disabilities and their organizations’.160
4.4 Paragraph 9(2)(d) This requirement applies to ‘buildings and other facilities open to the public’ regardless of whether they are in public or private ownership and management. Although the obligation is phrased as one to ‘provide’ signage, it seems likely that this should be interpreted in the same way as the obligation set out in article 9(2)(c) to ‘ensure’ accessibility as far as the private sector is concerned. Other than this, article 9(2)(d) appears to raise no major complexities. The only references to it in General Comment No 2 are as follows: General Comment No 2 (n 60) para 18. Nyusti and Takács v Hungary (n 6). 157 158 ibid para 10. ibid para 19. 152 154
153 See eg General Comment No 2 (n 60) para 13. 156 ibid para 9.3. ibid para 19. 159 160 ibid para 33. ibid para 19.
155
lawson
284
Accessibility
Movement and orientation in buildings and other places open to the public can be a challenge for some persons with disabilities if there is no adequate signage . . . . Article 9, paragraph 2 (d) . . . therefore provides that buildings and other places open to the public should have signage in Braille and in easy-to-read and understand forms . . . . Without such signage, . . . orientation and movement in and through buildings may become impossible for many persons with disabilities, especially those experiencing cognitive fatigue.161
4.5 Paragraph 9(2)(e) The scope of this obligation is identical to that of article 9(2)(d) discussed above. Thus, like that paragraph, it covers buildings and facilities open to the public and the obligation is framed as one to ‘provide’. Given the similarities between paragraphs 9(2)(d) and 9(2)(e), it is not surprising that both are addressed together in General Comment No 2.162 The General Comment thus stresses that article 9(2)(e) has an important role to play in facilitating ‘movement and orientation’. In addition, the provision of ‘live assistance and intermediaries’ has an important role to play in facilitating access to information and communication made available to the public in buildings or facilities for reasons other than facilitating movement. This function of article 9(2)(e) is recognized and explained by the General Comment together with article 9(2)(f ) and (g)—which perform the same role in this respect. In its words: without access to information and communication, enjoyment of freedom of thought and expression and many other basic rights and freedoms for persons with disabilities may be seriously undermined and restricted.163
4.6 Paragraph 9(2)(f) The reason given in General Comment No 2 for this requirement is the same as that just outlined in the context of article 9(2)(e). Unlike article 9(2)(e), however, this provision does not focus on specific ways or mechanisms for ensuring access to information. The wording is open-ended and allows room for the promotion of types of accessible information not yet invented. The importance and need for state initiatives to promote particular types of accessible information are matters on which disabled people’s organizations would seem to be particularly well placed to provide advice. In F v Austria,164 the CRPD Committee found that Austria was in breach of paragraph 9(1) and also 9(2)(f ) and (h).165 The reason for this was the ‘non-installation of the audio system by the state party when extending the tram network’,166 with the result that blind passengers did not have access to information provided as part of the public transportation service on an equal basis with others. Beyond this, however, the views of the Committee contain little additional reflection on or explanation of article 9(2)(f ).
161
ibid para 20. F v Austria (n 8).
164
lawson
162
General Comment No 2 (n 60) para 20. 165 166 ibid para 8.7. ibid.
ibid para 21.
163
Article 9
285
4.7 Paragraph 9(2)(g) As explained above, the CRPD Committee has urged states to ensure that all forms of ‘newly designed, built or produced objects, infrastructure, goods, products and services’ be accessible from the outset.167 This would include new forms of information and communication technology within the meaning of article 9(2)(g). Given the pace of innovation in the ICT field and the increasing importance of the Internet in the lives of all of us, this provision has particular significance.168 Although not discussed in General Comment No 2, because the obligation in article 9(2)(f ) and (g) is framed as one to ‘promote access to’ rather than as one to ‘ensure the accessibility of ’, it could potentially be construed as requiring states to do more than ensure that information and new ICTs comply with accessibility standards. They could, for instance, be construed as requiring thought to be given to promoting the availability of such ICTs to people with disabilities by, for example, ensuring they have access to training on the use of such ICTs (using accessibility programmes or features or even relevant assistive software) or making such ICTS affordable to them through subsidies.169 Such obligations fall within the ambit of article 4(1)(f )–(i)—paragraphs which have strong connections and overlaps with article 9(2)(f )–(h).
4.8 Paragraph 9(2)(h) A number of interesting observations about this provision appear in General Comment No 2. These suggest that the CRPD Committee is interpreting the phrase ‘accessible information and communications technologies and systems’ in this context to include, in particular, forms of ICT which can be used to enhance the accessibility of services and facilities. Thus, according to the Committee: New technologies can be used to promote the full and equal participation of persons with disabilities in society, but only if they are designed and produced in a way that ensures their accessibility. New investments, research and production should contribute to eliminating inequality, not creating new barriers. Article 9, paragraph 2(h), therefore calls on States Parties to promote the design, development, production and distribution of accessible information and communications technologies and systems at an early stage, so that these technologies and systems become accessible at minimum cost. The use of hearing enhancement systems, including ambient assistive systems to assist hearing aid and induction loop users, and passenger lifts pre-equipped to allow use by persons with disabilities during emergency building evacuations constitute just some of the examples of technological advancements in the service of accessibility.170
Article 9(2)(h) was the third element of article 9 which the CRPD Committee found to have been breached in F v Austria.171 In arriving at this conclusion, the Committee drew
General Comment No 2 (n 60) para 24. For an interesting discussion of accessibility and the inclusive potential of the web, see Blanck (n 112). 169 For a discussion of different policy approaches to ‘accessibility’ and ‘availability’ in this sense, see Rune Halvorsen, ‘Digital Freedom for Persons with Disabilities: Are Policies to Enhance E-accessibility and E-inclusion Becoming more Similar in Nordic Countries and the US?’ (2010) 2 European Yearbook of Disability Law 77; and Anna Lawson, ‘Challenging Disabling Barriers to Information and Communication Technology in the Information Society: A United Kingdom Perspective’ (2010) 2 European Yearbook of Disability Law 131. 170 171 General Comment No 2 (n 60) para 22. F v Austria (n 8). 167 168
lawson
286
Accessibility
on its General Comment No 2—recalling, in particular, that ‘the importance of information and communications technology lies in its ability to open up a wide range of services’ and to ‘transform existing services’.172 Interestingly, while article 9(2)(h) covers the promotion of the ‘Design, Development, Production and Distribution’ of Accessible ICT, the issue at stake in F v Austria appears to have been the distribution and use of the technology—given that relevant technology was already installed and in use in older parts of the tram network.
172
lawson
ibid para 8.5 quoting from General Comment No 2 (n 60) para 5.
Article 10 Right to Life State parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective
enjoyment by persons with disabilities on an equal basis with others.
1. Introduction 2. Background and Travaux Préparatoires 3. Paragraph 1 3.1 ‘Inherent right to life’ 3.2 The Right to Life from the Perspective of Equality and Non-Discrimination 3.3 Right to Life and Right to Health of Disabled Persons 3.4 Right to Life and Quality of Life
3.4.1 Quality Adjusted Life Years (QALY) and Disability Adjusted Life Years (DALY)
287 288 296 296 299 301 302
302 3.5 Right to Life and Assisted Suicide 304 3.6 Right to Life Versus Pre-Natal Selection and Disability-Selective Abortion 305 3.7 ‘on an equal basis with others’ 311 3.8 Medical Interventions 311 3.8.1 Medical Assistance to End Life by Reason of Disability 312 3.9 Killing Newborn with Disabilities 313
1. Introduction The CRPD celebrates the lives of persons with disabilities. The right to life accorded by the Convention carries a significant position among other rights to facilitate this celebration of life with disabilities. As such the right to life is far reaching, which encompasses the right to live, survive, and develop on an equal basis with others. Significantly, the Convention casts its effectiveness on the state. Thus, states parties are under an obligation or legal responsibility to take measures for the effective enjoyment of the right to life. Hence, article 10 gives rise to a substantive right, with immediate enforceability. This is to ensure quality of life in all spheres of the life of persons with disability. It reflects the concern of the Convention to consider the lives of persons with disabilities as possessing the same value as those of any other human being. This wider dimension of value of life is essential, because persons with disabilities have traditionally been treated as lesser human beings. The Convention brought a paradigm shift against this social prejudice, by recognizing the inherent dignity of persons with disabilities and provides a wide range of basic rights. All those rights are further strengthened by the right to life. The drafters of the CRPD have designed the right to life as facilitating the provision of ‘life’ to other basic rights. While nizar
288
Right to Life
reiterating the inherent right to life of all human beings, the CRPD strongly reaffirms it in respect of persons with disabilities. Hence, it is worthwhile to explore the efforts made by the drafters to frame this single, but all-encompassing right. We will further examine the wider meaning of the right to life and its application. This will be followed by tracing the interpretation given by the CRPD Committee in its concluding observations. In order to understand the micro-level application of the right, we shall examine the interpretation and its application by domestic and regional courts. Finally, we shall explore the individual complaints made under the optional protocol and the consequent interpretation provided. This shall be done to define the jurisprudence surrounding the right to life and the required measures to strengthen and facilitate its wider application as envisaged under the Convention.
2. Background and Travaux Préparatoires The scope of the right to life is far reaching, in the sense that it is inclusive and facilitative of other rights. The right to life was included in the Convention mainly in view of the stereotypes prevailing in society against a life with disability.1 The lives of persons with disabilities are under threat because others often think that a disabled life is not worth living.2 This cautioned the drafters to include the ‘right to survive’ as an integral meaning or purpose of the right to life. This is evident from the Chair’s draft text (December 2003) of the Convention, which stated in article 12 that: Every person with disability has the inherent right to life and survival. This right shall be protected by law. No one shall be arbitrarily deprived of his or her life.3
The original draft reflects the CRPD’s emphasis as to the ‘inherent’ nature of the right to life. The qualifier ‘inherent’ has been attached to this article to display its supremacy. The right to life is an inborn right of each individual and exists simply by virtue of being ‘human’.4 Therefore, states become ‘exclusive responsibility holders’5 to take all appropriate measures to facilitate the effective enjoyment of the right to life. The inherent quality of the right to life is also linked to the unsettled debates about the meaning of the terms ‘human’ and ‘person’. It is noteworthy that the pre-working group language in the original draft referred to the term ‘person’ to specify persons with disabilities. However, the pre-Working group team had not used the term ‘human being’ or ‘human life’. The determined choice of this term points towards the earnest effort on the part of the CRPD drafters to recognize all persons with disabilities as complete human beings. The recognition of the right to life as an absolute right can be derived only by accepting a person with disability as an independent and autonomous being with full personhood. The WNUSP made the point that ‘[e]very human being is a person. The status of personhood shall not be deprived on account of 2 Smitha Nizar, The Contradiction in Disability Law (OUP 2016) 124. ibid. Chair’s Draft Elements of a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities (December 2003), The Chair’s draft Art 12 on the right to life, reproduced the article of the Bangkok Draft. Bangkok recommendations on the elaboration of a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities UN Doc A/AC265/2003/CRP/10 (2003). 4 A human life has intrinsic value simply because it is a human life; see Ronald Dworkin, Life’s Dominion: An Argument about Abortion, Euthanasia and Individual Freedom (Knopf 1993) 70. 5 Ralf Sandland, ‘Lessons for Children’s Rights from Disability Rights’ in Eva Brems, Ellen Desmet, Wouter Vandenhole (eds), Children’s Rights Law in the Global Human Rights Landscape: Isolation, Inspiration, Integration? (Routledge 2017) 85. 1 3
nizar
Article 10
289
actual or perceived disability.’6 A special category worthy of mention are the unborn at risk of abortion because of their disabilities. If the unborn is not viewed as a person then it may be disposed of without any sanctions on the basis that it does not possess, nor will it ever possess. It is worthwhile to note the argument that, ‘human beings even in the earlier stages of life, and irrespective of age or size or disabilities, must not be subjected to discriminatory, arbitrarily defined, logically inconsistent and vexatious tests of personhood’.7 The presence of ‘pro-life’ and ‘pro-choice’8 supporters among the delegates of the Ad Hoc Committee created a stalemate as regards the term ‘person’ to refer to persons with disabilities. This stalemate was generated on account of the theoretical difference between ‘human being’ and ‘person’.9 It has a bearing on the issue of when life begins, and whether legal protection to life is available both before and after birth.10 The statements of delegates on article 10 at the Ad Hoc Committee are informative of the perception of the right to life among different participants. Representing the Marshall Islands, Mr Capelle stated that: The Marshall Islands understands that article 10 guarantees the ‘right to life’ of disabled persons from the moment of conception and throughout their natural lives until natural death.11
The Holy See also referred to the right to life, while making its statement on article 25 (right to health), specifically by reference to sexual and reproductive health.12 Representing the Vatican, Archbishop Migliore stated that: . . . we opposed the inclusion of such a phrase in this article, because in some countries reproductive health services include abortion, thus denying the inherent right to life of every human being, as NGO Contributions to the Elements of a Convention, ‘Nature of the Convention’; WNUSP, ‘Freedom from torture, right to life, liberty, bodily and mental integrity’(CRPD Ad Hoc Committee Meeting 16–27 June 2003), available at: . 7 Rita Joseph, The Human Rights and the Unborn Child (Brill 2009) 149. 8 Nizar (n 1) 42; pro-life advocates believe that human life begins from the conception of an embryo; hence, a foetus has the same value as a human being. Therefore they disagree with destruction of a foetus. At the same time, pro-choice advocates do not ascribe life to the foetus and contend that it is the right of a pregnant woman to decide whether to continue the pregnancy or not. See also, Bret Shaffer, ‘The Right to Life: The Convention on the Rights of Persons with Disabilities and Abortion’ (2009) 28 Penn State International Law Review 271. ‘Pro-choice’ advocates may also see the term ‘pro-life’ as conflating the beginning of life with the beginning of personhood. Many ‘pro-choice’ advocates believe that, while an abortion may terminate a life, life only becomes subject to moral worth when that life reaches personhood. What personhood entails differs between ‘pro-choice’ advocates but generally entails a certain level of cognition. Of course, the arguments described here are not exhaustive of either ‘pro-choice’ or ‘pro-life’ advocates’ positions. 9 The difficulty of not having a definition on both was explicit during the Antebellum period of America. The 1857 case of Dred Scott v John Sandford 60 US 393 (1857) demonstrates this. This case has considered that personhood solely depends upon scope and standing of liberal democracies on rights and privileges. The majority opinion determined that, (Justice Roger) a black man did not qualify as a citizen and was not entitled to the rights and privileges (including enjoying legal standing before the court) of those who are clearly identified as full members of society. It was held: ‘The words “people of the United States” and “citizens” mean the same thing. They both describe body, who, according to our republican institutions, form and who hold power and conduct the government through representatives. They are what we familiarly call the “sovereign” every citizen is one of this people, and are constituent sovereignty. We think they are not, and that they are not included, and were not intended to be included, under the word “citizens” in the Constitution, and can, therefore, claim none of the rights which that instrument provides for and secures to citizens.’ The question as to whether or not Dred Scott qualified as a ‘human being’ was considered to be a moot one by the Court. The crucial question was whether or not he qualified as a ‘person’—that is, as a full member of American society. See, James T McHugh, ‘What Is the Difference between a “Person” and a “Human Being” within the Law’ (1992) 54 The Review of Politics 445–61. 10 Nizar (n 1) 124. 11 The CRPD adoption session, 76th plenary meeting of UNGA UN Doc A/61/PV 76 (13 December 2006) 4. 12 Art 25(a) CRPD. 6
nizar
290
Right to Life
affirmed by article 10 of the Convention. It is surely tragic that, wherever foetal defect is a precondition for offering or employing abortion, the same Convention created to protect persons with disabilities from all discrimination in the exercise of their rights may be used to deny the very basic right to life of disabled unborn persons.13
The delegates of the Philippines, Peru, and Costa Rica also referred to the right to life, in connection with right to health.14 Similarly, Costa Rica stated that: the reference in the Convention to the concept of sexual and reproductive health does not constitute a new human right or, still less, imply relativization or negation of the right to life, which we regard as the source of all rights.15
While referring to the right to health, the delegation of the Philippines remarked that it is of the belief that: the provision of health care and all other services should not in any way undermine the right to life of a person, with or without a disability, in all stages of his or her being.16
The above statements show the intermittent link between the right to life and pro-life arguments. Although disability rights advocates may be ‘pro-choice’ or ‘pro-life’ for reasons unrelated to disability rights, many disability rights advocates, regardless of their positions on abortion, also find that ‘pro-life’ policies coincide with their view that abortions should not be used to discriminate against children who may be born with disabilities.17 Consequent to the above arguments, in fact, the Council of Europe did request that ‘persons’ replace the term ‘human being’ in the context of the ‘right to life’ article in order to avoid the issue of when life begins.18 The term ‘human being’ was proposed by the Facilitator so that the language here would match that of the International Covenant on Civil and Political Rights (ICCPR).19 Thus, the most noteworthy change that occurred to the right to life was replacing the term ‘person’ with ‘human being’. The terminology of ‘person’ evinces the heightened human rights outlook of the CRPD in affirming that the right to life for persons with disabilities is of an inherent nature. The original draft underlines the ground level reality of the vulnerability of life with disabilities. A life with disability is always at the risk of existence, as persons with disabilities have traditionally been treated as lesser human beings. Therefore, in the past no need was felt to protect the life of persons with disabilities in any distinct way. The CRPD represented a turning point in this respect. Hence, the right to life provision was framed particularly in order to protect persons with disabilities from any risk to their life. However, a more refined provision was provided for the right to life in the submitted draft for negotiation. It read: States Parties reaffirm the inherent right to life of all persons with disabilities, and shall take all necessary measures to ensure its effective enjoyment by them.20
UN Doc A/61/PV 76 (n 11) 23. 14 ibid 5. 15 ibid 11. 16 ibid 15. Shaffer (n 8) 271. 18 Council of Europe, Drafting Proposals and Comments by the Council of Europe Secretariat 3 (21 April 2006); see also Shaffer (n 8) 284; see also Samuel R Bagenstos, ‘Disability, Life, Death, and Choice’ (2006) 29 Harv J L & Gender 425. 19 Ad Hoc Committee, Fourth Session, Discussions on Draft Article 8, Ad Hoc Committee Daily Summaries (25 August 2004) 2. 20 Article 8, Draft Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities. 13 17
nizar
Article 10
291
This draft article opened the door by which to discuss many issues that are central to and at the same constitute a comprehensive part of right to life. Each term of the draft article was debated to establish the CRPD human rights perspective in a clear manner. The right to life draft article (article 8 in the original) was discussed for the first time in the third session of the Ad Hoc Committee (24 May–4 June 2004),21 which marked the beginning of the discussions. The working group members had expressed different views about the need to have such an article in the Convention and also its content. The discussions outlined various facets of this right and how it specifically affects persons with disabilities. In particular, the primary concern was on the ‘effective enjoyment’ of this right during high-risk situations, such as armed conflict and natural disaster. During the discussions, a question was raised whether such extreme situations of humanitarian emergencies should be dealt with as part of right to life.22 Jordan, Yemen,23 Palestine, Lebanon, and Uganda, among others, suggested expanding the responsibility of states to protect the right to life of civilians in such situations to include persons with disabilities.24 This was proposed in order to expand the existing human rights obligations of states under existing treaties25 for the protection of civilians from armed conflict and humanitarian disasters. The mere fact of disability was viewed as justifying sacrificing the life of a disabled person in the course of a humanitarian crisis, whereas the same is not true in respect of non-disabled persons. Therefore, consequent to the above discussion, some members of the Working Group suggested that the Convention should contain a separate draft article on the protection of the rights of persons with disabilities in armed conflict, similar to the approach taken in article 38(4) of the Convention on the Rights of the Child.26 It was also suggested that such an article could deal more broadly with the protection of the rights of groups facing a particular risk.27 In particular, Yemen, on behalf of the Arab Group, proposed a new two-part draft article 8(b), with added reference to ‘armed conflicts, occupations, and wars.’ These were 21 UN Doc A/AC265/2004/WG/CRP 4 (2004); discussions on the right to life were carried out on 25 May 2004—see ‘Daily summary of discussions related to Article 8 Right To Life’. 22 Radhika M Alkazi, Understanding the UNCRPD: UN Convention on the Rights of Persons with Disabilities: A Tool Kit (Arth Astha 2009) 50. 23 While Yemen agreed with the original draft Art 8, it recommended the addition of a second paragraph specifying life risk situations. The recommendation was to add the following: ‘States parties shall, in accordance with their obligations in the context of international law and the Universal Declaration of Human Rights and international treaties and conventions for the protection of civilians from armed conflicts, take all necessary measures to guarantee the protection and care for persons with disabilities that are affected by armed conflicts or are refugees or are internally displaced persons’ right to life.’ 24 CRPD Ad Hoc Committee, ‘Report of the third session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2004/5 (9 June 2004) 21. 25 It is significant to emphasize the strong connection between the right to life and state responsibility under other international treaties. In the case of Xákmok Kásek Indigenous Community v Paraguay, in its judgment of 24 August 2010, the Inter-American Court of Human Rights, considered the state responsible to ensure the right to life under the American Convention on Human Rights (ACHR). It was held that ‘the right to life is a fundamental human right, the full enjoyment of which is a precondition for the enjoyment of all other human rights. Therefore, restrictive actions affecting this right are impermissible. Consequently, states are obliged to ensure the creation of the necessary conditions to prevent violations of this right and, in particular, the obligation to prevent its agents from endangering it. The observance of Art 4 ACHR, in relation to Art 1(1) ACHR, not only presumes that no one be deprived of their life arbitrarily (negative obligation), but also requires States to take all appropriate measures to protect and preserve the right to life (positive obligation) in keeping with the obligation to ensure the full and free exercise, without discrimination, of the rights of all persons under their jurisdiction.’ 26 27 CRPD Third Session (n 24) fn 31. ibid.
nizar
292
Right to Life
viewed as creating special conditions impacting PWD, and Yemen expressed readiness to look at any ways and means to enhance the text. They reminded the delegates that PWD in countries experiencing armed conflict, refugee situations, or those facing military occupation deal with problems of such severity as they do with cases of suicide. All delegates were encouraged to ‘strive to protect the disabled laboring under such travail’ by adding a reference to ‘persons under the yoke of occupation’.28 The draft history of article 11 (on humanitarian situations where life is at risk) shows that Costa Rica was the first to suggest a separate provision on ‘special situations’ as the issue emerged in the debate over the right to life. The discussion at the Ad hoc Committee was supportive as the fifth session of the Ad Hoc Committee took place only four weeks after the December 2004 tsunami. The Facilitator for the right to life suggested a new article, which referred to ‘situations of risk to the general population’ and persons with disabilities being ‘especially vulnerable’; it used language from article 38(4) CRC on ‘all feasible measures’. There was some discussion as to whether situations of risk should be specified. Again, the reference to ‘armed conflict’ triggered a ‘classic’ UN human rights debate over a possible reference to ‘foreign occupation’—in UN terms a codeword for the Israeli/Palestinian conflict.29 This resulted in the framing of a new article to address the responsibility of states to ensure protection and safety of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies, and the occurrence of natural disaster.30 However, this exercise was completed after discussing the need to add an equal treatment provision for the enjoyment of the right to life. Given the inferior value attached to the lives of persons with disabilities, it was evident that their protection from the calamities of a situation at risk would take second place as compared to non-disabled persons. In the absence of a disability-specific human rights affirmation for the right to life of persons with disabilities, their vulnerability would remain the same. It was therefore necessary to emphasize the need for equal treatment. Thus, the reality of discrimination was taken care of by the drafters in the subsequent sessions. This was done in order to recognize the value of life for persons with disabilities on an equal basis with others. The fourth session was held with an aim to clarify as many of the issues concerning the draft articles as possible. There was general agreement to include an article on the right to life supporting the text prepared by the Working Group.31 However, New Zealand raised the need to clear the ambiguity concerning this right. The New Zealand delegate noted that the first part of this article replicates language used in previous instruments, but the second part, ‘shall take all necessary measures’, was new and could imply preferential treatment.32 New Zealand, therefore, suggested an amendment to add ‘on an
28 Ad Hoc Committee, ‘Report of the third session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2004/5 (9 June 2004) 21. 29 ibid; see also Marianne Schulze, Understanding the UN Convention on the Rights of Persons with Disabilities (Handicap International 2010) 83. 30 Art 11 (Art 9 in the original draft). 31 Ad Hoc Committee, ‘Report of the fourth session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/59/360 (4 September 2004). 32 ibid.
nizar
Article 10
293
equal basis with others’ to resolve this problem.33 The delegates from Costa Rica, Canada, and Mexico explicitly supported this qualification of the right. Finally, it was agreed to strengthen the right by adding ‘on an equal basis with others’.34 The phrase acknowledges the ground level discrimination that persists against persons with disabilities and the consequent denial of basic rights. The responsibility of the state to treat persons with disabilities on an equal basis with others reflects the comprehensive human rights stand of the CRPD. While it affirms inherent dignity for all, it reassures that this also true for persons with disabilities, who in the past were denied such rights.35 That is why, after strengthening the right by adding the phrase ‘equal basis’, the delegates expressed an overwhelming concern to broaden the article to include situations of risk. Although some delegations proposed broadening the draft article to include situations of risk, such as natural disaster, armed conflict, and foreign occupation, other delegations had difficulty with this and supported a more streamlined approach. During the fourth session, delegations from countries such as Jordan, China, and Chile expressed their concern by the association of the right to life with situations of risk, such as armed conflict. At the same time Mexico, India, and Lebanon supported the inclusion of an independent provision on this matter elsewhere in the CRPD.36 Canada and the USA opposed reference to armed conflict.37 The international Disability Caucus (IDC) supported the reference to armed conflict since it felt there was a need to ensure the safety of persons with disabilities during such emergency situations. There was concern regarding equality for persons with disabilities in contexts of this nature. For instance, Uganda supported the original formulation of the right to life in draft article 8, expressing its desire that it include a paragraph addressing armed conflict. The delegate of Uganda suggested the following formulation: In accordance with their obligations under international humanitarian law to protect civilian population in armed conflicts and risk situations, states parties shall take all feasible measures to ensure the protection and care of all persons with disabilities who are affected by armed conflicts.38
Taking account of those differing views to include situations of risk, the facilitator proposed the following wording: States parties recognize that in situations of risk to the general population persons with disabilities are especially vulnerable and shall take all feasible measures for their protection.39
It was noted that the phrase ‘all feasible measures’ was drawn from paragraph 4 of article 38 of the Convention on the Rights of the Child. However, there was a divergence of views on whether the wording of draft article 8 bis should be further elaborated to include specific instances of situations of risk. The issue was referred to the facilitator for further discussion with the delegations. Finally, since there was a clear understanding that
33 ibid; New Zealand did not support the introduction of language attempting to cover issues such as the status of unborn children as this ‘could open a Pandora’s box’. It took the stand that the right to life article should not cover primary prevention of disability. 34 35 36 See (n 31). Nizar (n 1) 123. See (n 31). 37 38 ibid afternoon session. ibid. 39 Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2005/2 (23 February 2005) 6. In the context of the discussion of paragraph 3 of draft Art 12, the facilitator proposed the following text: ‘Special attention shall be paid to measures reflecting the particular vulnerability of persons with disabilities in situations of emergency, inter alia, during armed conflict or foreign occupation.’ The proposal was not discussed, on the understanding that it would be considered in the context of the discussions of draft Art 8 bis.
nizar
294
Right to Life
the right to life was threatened increasingly in situations of armed conflict, humanitarian emergencies, and natural disasters and as a result it was decided to address this issue separately with an independent article.40 With these issues having been resolved, the delegates were very particular to discuss two more issues, the right to survival and development and prenatal abortions as part of right to life. The terms ‘reaffirm’ and ‘shall take all necessary measures’ in respect of the right to life have been used to strengthen the text and make it clear that the ‘right to life’ includes the ‘right to survive’.41 In the third session of the Ad Hoc Committee India supported the ‘right to survival and development’ as an integral meaning of right to life.42 It was proposed to add that: ‘states parties shall ensure to the maximum extent possible the survival and development of persons with disabilities’.43 In the same session the NGO World Federation of Deaf and Blind recommended changing the title of the provision to ‘Right to Life, Survival and Development’. Supporting India, it also suggested adding a second paragraph to read that: ‘the right to life includes the right to survive’ with the following additional language: ‘States parties shall take all necessary measures to ensure its effective enjoyment by women, men, girls and boys in all stages of life.’44 Save the Children International (SCI), speaking also on behalf of Handicap International, agreed that the provision encompassed all persons with disabilities, including children. It supported the proposal of Argentina, India, and others on the concept of survival and development and suggested modifying the article’s title in order to render it consistent with core principles of the right to life, survival, and development contained in article 6 of the Convention on Rights of the Child (CRC) and in order to reflect ‘not only the right to life as such, but the right to survive’.45 It suggested an additional paragraph as follows: Children and young people have right to physical, mental, spiritual, moral and social development to the maximum extent possible.46
Whilst agreeing with the Working Group’s text of the right to life article, the Landmine Survivors Network (LSN) commented that serious consideration should be given to India’s proposal reflecting the CRC approach.47 Since delegations could not concede on this aspect the discussions were moved forward to the fourth session. At the fourth session the delegates 40 A separate article to deal with such situations of risk was deemed essential to ensure state responsibility to protect the right to life of persons with disabilities, like all other human beings. Concern for life in such situations had already been reflected in various judgments of international tribunals, eg in Mapiripán Massacre v Colombia, 15 September 2005, the Inter-American Court of Human Rights recognized the state responsibility to investigate alleged violations of the right to life in situations of armed conflict and occupation. The judgment was in connection with the respondent state’s failure to fully investigate the massacre of civilians carried out by a para-military group with the alleged assistance of the state authorities. It was held that, ‘. . . the country’s conditions, no matter how difficult, do not release a state party to the American Convention of its obligation set forth in this treaty, which specifically continue in cases such as the instant one. The Court has held that when the state conducts or tolerates actions leading to extra-legal executions, not investigating them adequately and not punishing those responsible, as appropriate, it breaches the duties to respect rights set forth in the Convention and to ensure their free and full exercise, both by the alleged victim and by his or her next of kin, it does not allow society to learn what happened, and it reproduces the conditions of impunity for this type of facts to happen once again.’ 41 Nizar (n 1) 124. The IDC suggested using ‘reaffirm and shall recognize’ to strengthen the text and to make clear that the ‘right to life’ also includes the ‘right to survive’. See (n 31). 42 Ad Hoc Committee, ‘Report of the third session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2004/5 (9 June 2004) 22. 43 44 45 46 47 ibid. ibid. ibid. ibid. ibid.
nizar
Article 10
295
of Eritrea supported India’s suggestion to add a second paragraph to the right to life.48 The International Disability Caucus reiterated its previously stated position.49 It submitted that the right to survival and development had already been included in the CRC, so this was not unusual or controversial. It expressed concern with the notion that disability could be used as a ground for the termination of life, which in turn impacts on the very enjoyment of the right to life. This session also stands out because of the concerns raised for the pre- birth value of life with disability and the severity of undesirability for a life with disability. During the third session, two Australian organizations, NACLC/People with Disabilities Australia Incorporated and the Australian Federation of Disability Organizations supported retaining the content of the draft article with an additional statement elaborating on rights related to the specific circumstances of persons with disabilities.50 A comprehensive debate over the above issues as part of the right to life has drawn the need to address the apprehension concerning genetic engineering and the consequent threat for the survival of a life with disabilities. Thus, the eugenic threat, a marked apprehension resulting from genetic engineering was also a concern for the delegates.51 In the third session, Inclusion International expressed its concern over the role of genetic engineering, noting that PWD constitute part of human diversity and bring unique contributions through their disability.52 ‘Don’t prevent us, include us’, was the slogan of this session. Inclusion International proposed an additional third paragraph that would state: ‘Disability must not become a justification for termination of life.’53 The Canadian Association of Living (CAL) supported the draft article and urged that genetics and biotechnology issues also be addressed. As parents, they expressed a concern that scientific and medical models may pose a ‘slippery slope toward genetic perfection’, which is detrimental to persons with disabilities. CAL expressed a need for the families of people with disabilities to be included in all discussions on bioethical issues and for recognition that ‘technology must sustain diversity and common humanity’.54 At the fourth session, the International Disability Caucus iterated its previous proposal for the title of the article.55 It further submitted that the right to life must be recognized at all stages of life,56 including infants—girls and boys. The IDC further clarified that disability is not a justification for the termination of life and because this issue impacts the enjoyment of the right to life it should be included in the final version.57 While the IDC took no position on the issue of abortion in general, it opposed compulsory abortion based on prenatal diagnosis. In turn, a discussion was required whether the right to life in the CRPD should address when life begins and whether legal protection to life is available both before and after birth.58 The IDC chose not to address this question and only
49 See (n. 31). ibid. See (n 28), Ad Hoc Committee Third Session, 25 May 2004, NACLC/People with Disabilities Australia Incorporated/Australian Federation of Disability Organizations. 51 52 53 54 55 See ibid. ibid. ibid. ibid. ibid. 56 At the fourth session of the Ad Hoc Committee, New Zealand cautioned against the inclusion of a language that would cover ‘unborn children’ within the remit of the right to life. Canada and India supported this stand. At the same time Chile supported the introduction of language that would cover persons with disabilities in ‘various stages’ of life. The International Disability Caucus also supported amending the ‘right to life’ article to include coverage for persons with disabilities in ‘all stages of life’—see IDC Working Paper (23 January 2005). 57 See (n 24), Ad Hoc Committee third Session, NACLC/People with Disabilities Australia Incorporated/ Australian Federation of Disability Organizations. 58 Nizar (n 1) 124. 48 50
nizar
296
Right to Life
insisted that the value of a life with disability should be recognized and that all persons with disabilities should have the right to life.59 However, the other delegations opined that primary prevention may have significance for society at large but had no place in a convention concerned with the rights of persons with disabilities.60 The final text of article 10 on the right to life was unanimously accepted at the seventh session.61 No further discussions were held on article 10 and the Ad Hoc Committee adopted the draft of article 10 at its eighth session.62
3. Paragraph 1 3.1 ‘Inherent right to life’ The text of the right to life in the CRPD is consistent with that in core human rights treaties such as the UDHR, ICCPR, CRC, and the Convention on the Elimination of All Forms Discrimination Against Women (CEDAW). The paramount importance of this right was reiterated while drafting the ICCPR. Article 6(1) of the ICCPR provides that ‘Every human being has the inherent right to life. This right shall be protected by law. No one shall be arbitrarily deprived of his life.’ The adjective ‘inherent’ emphasizes the high hierarchical position of the right. The right has been seen as the outflow of a pre-positive stratum of law, namely jus naturale.63 The state responsibility envisaged is very explicit in the UN Human Rights Committee’s General Comment.64 The committee stated that: The right to life has been too often narrowly interpreted. The expression ‘inherent right to life’ cannot properly be understood in a restrictive manner, and the protection of this right requires that States adopt positive measures. In this connection, the Committee considers that it would be desirable for States parties to take all possible measures to reduce infant mortality and to increase life expectancy, especially in adopting measures to eliminate malnutrition and epidemics.65
The ICCPR thus holds that the right to life concerns the inherent value of all human beings. It is a right not to be arbitrarily deprived of life.66 59 Schulze (n 29) 57; see also ‘Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’, Seventh Session UN Doc A/AC265/2006/2 (13 February 2006); Nizar (n 1) 124. 60 61 Nizar (n 1) 125. UN Doc A/AC265/2006/2 (n 59). 62 Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, Eighth Session UN Docs A/AC265/2006/4 (1 September 2006), and A/AC265/2006/L 7 (21 November 2006). 63 Marc J Bossuyt, Guide to the ‘Travaux Préparatoires’ of the International Covenant on Civil and Political Rights (Martinus Nijhoff 1987) 119. 64 HRCtee, General Comment No 6: Article 6 (Right to Life) (30 April 1982) para 1. 65 ibid para 5. 66 eg in Judge v Canada, HRCtee Comm No 829/1998, the author, Roger Judge, claimed that Canada imposed mental suffering upon him amounting to cruel, inhuman, and degrading treatment or punishment, having detained him for ten years. He complained that by detaining [him] for ten years despite the fact that he faced certain execution at the end of his sentence, and proposing now to remove him to the United States, Canada has violated [his] right to life, in violation of article 6 of the Covenant. In reviewing its application of Art 6, the Committee noted that, ‘as required by the Vienna Convention on the Law of Treaties, a treaty should be interpreted in good faith and in accordance with the ordinary meaning to be given to the terms of the treaty in their context and in the light of its object and purpose. Paragraph 1 of article 6, which states that “Every human being has the inherent right to life?”, is a general rule: its purpose is to protect life.’ (para 10.4). The Committee found a violation of article 6 by Canada (para 11).
nizar
Article 10
297
If we look into other treaties and their stance on the right to life, we can see that it is envisaged as recognizing the inherent value of human beings. Article 6(1) of the CRC explicitly states that state parties recognize that every child has the inherent right to life. The statement of the CRC Committee on the right to life of children with disabilities shows the significance of this ‘inherent’ nature of right to life. It states: States must create an environment that respects human dignity and ensures the holistic development of every child. In the assessment and determination of the child’s best interests, the State must ensure full respect for his or her inherent right to life, survival, and development.67
This points to state responsibility to protect the right to life of every child, respecting his or her inherent value of life.68 Thus, evidently, the right to life occupies a high position in the hierarchy of human rights law. The right to life in human rights jurisprudence is based on the need to protect the dignity and value of human life. Therefore, in the CRPD, the requirement that states ‘ensure its effective enjoyment’ deviates from the standard clauses on the right to life, leading to a broad interpretation of the right. The main cause for this formulation is the fact that regularly the lives of persons with disabilities are devalued as not ‘worth living’ and thereby their elimination is justified. The right to life accorded in the CRPD thus reinforces the respect for the ‘inherent dignity’ of all persons.69 Regional and domestic courts are still at a nascent stage in their interpretation of article 10 CRPD, evidently relying more on domestic laws or general international law, as well as regional human rights law. This is evident, for example, in the case of Glass v UK 70 where the parents of an intellectually disabled child challenged the Do not Resuscitate Order of the hospital authorities. The ECHR held that even though the decision of the hospital had violated article 8 ECHR, the interference was justified as it had been in accordance with the law.71 Can and should article 10 CRPD be applied in such difficult cases to provide persons with intellectual disabilities greater protection for their right to live?72 This enthusiasm or sceptics was raised by Andreas Dimopoulos, who considers the right to life under article 10 CRPD as very important for persons with intellectual disabilities.73 There are, however, a limited number of cases where the courts have specifically referred to the CRPD. In Valentine Campeanu v Romania,74 an NGO, the Centre for Legal Resources, was allowed to bring a case before the ECtHR on behalf of a young Roma man who died in a psychiatric hospital. He had been unlawfully deprived of his life, having 67 CRC Ctee, General Comment No 14 (2013) on the right of the child to have his or her best interests taken as a primary consideration (Art 3 para 1) UN Doc CRC/C/GC/14 (29 May 2013) para 42. 68 The insight of the right to life is evident from the concluding observations of the CRC Ctee on the practice of euthanasia for patients below the age of eighteen years in the Netherlands. It recommended considering the possibility of abolishing the use of euthanasia on patients below eighteen years of age. CRC Ctee, ‘Concluding Observations on the Fourth Periodic Report of the Netherlands’ UN Doc CRC/C/NDL/CO/4 (8 June 2015) paras 28, 29. 69 70 Nizar (n 1) 135. (Application No 61827/00), Fourth Section, March 9 2004. 71 Para 74; see, among many other authorities, Herczegfalvy v Austria, (1992) 15 EHRR 437, paras 88–91. Nor does it consider it necessary to pronounce on the applicants’ contention that the authorities failed to comply with the positive obligations inherent in an effective respect for the first applicant’s right to physical integrity by failing to adopt measures designed to secure respect for his physical integrity. See eg X and Y v the Netherlands (1986) 8 EHRR 235, para 23 and, more recently, Odièvre v France (2004) 38 EHRR 33. 72 Andreas Dimopoulos, Issues in Human Rights Protection of Intellectually Disabled Persons (Routledge 2016) 72. 73 ibid; according to the author, the provisions on the right to life and legal capacity are very important for persons with intellectual capacities. 74 App 47848/08, Grand Chamber judgment (17 July 2014).
nizar
298
Right to Life
been subjected to inhuman and degrading treatment. The ECtHR, in finding a violation of articles 2 (right to life) and 8 (right to an effective remedy) ECHR, referred to article 10 CRPD, along with articles 5, 12, and 13 CRPD as relevant international law.75 A similar trend may be found in some, but relatively few, domestic jurisdictions. For instance, in India, the Bombay High Court in Ranjit Kumar v State Bank of India76 has relied on the principle of reasonable accommodation enshrined in the CRPD and linked it to the right to life guaranteed in the Indian Constitution. In this case, the petitioner was declared medically unfit for employment as an officer in the State Bank of India because he had previously undergone a renal transplant. The Bombay High Court rejected the bank’s contention and directed it to appoint the petitioner by providing reasonable accommodation in the form of medical expenses. The Court held that: reasonable accommodation, if read into article 21 of the Indian Constitution guaranteeing the right to life, based on the Disabilities Convention, would not be in conflict with municipal law and on the contrary it would give added life and dimension to the ever expanding concept of life and its true enjoyment.77
In equal manner, the Serbian Constitution recognizes and protects the right to life and survival of all its citizens on equal terms with others, whereas in terms of the fact that human life is inviolable, no person, including a person with a disability, can be subjected to arbitrary deprivation of his/her life.78 Thus, the right to life is guaranteed to persons with disabilities on an equal footing with others.79 It is considered a criminal offence to breach in any manner the exercise of the right to life of persons with disabilities in the same manner as non-disabled persons.80 Serbia has ensured as a matter of policy and law the fulfilment of the paradigm shift introduced by the CRPD.81 The CRPD Committee has to date received two individual complaints claiming a violation of article 10 CRPD. In H M v Sweden82 a violation of article 10, along with several other rights, was claimed. The complaint centred on a refusal to grant a building permission for the construction of a hydrotherapy pool for the rehabilitation of a person with a physical disability on the ground that the requested extension was incompatible with the city’s development plan. Even though the Committee concluded that the CRPD had been violated, it was noted that the petitioner had not provided adequate evidence to substantiate the admissibility as to how article 10, along with articles 9, 14, and 20, might have been violated.83 The Committee’s view was clearly predicated on procedural grounds and hence missed a golden opportunity for a more comprehensive analysis. At its eleventh session the CRPD Committee considered X v Argentina,84 wherein the author claimed a violation of articles 9, 10, 13, 14, 15, 17, 25, and 26 CRPD, through the state forcing upon him a custodial sentence. The case concerned a denial of home arrest, conditions of detention and access to adequate medical care and rehabilitation for 76 77 ibid. Ranjit Kumar case 2009(5) Bom CR 227. ibid at 235. CRPD Committee, ‘Initial Report submitted by the Republic of Serbia’ UN Doc CRPD/C/SRB/1(29 September 2014) para 140. 79 80 ibid para 141. ibid para 141. 81 Paras 108 and 109 of the Country Report demonstrates the practical efforts of Serbia in tune with the CRPD. 82 H M v Sweden UN Doc CRPD/C/7/D/3/2011 (21 May 2012). 83 ibid, see also Valentina Della Fina, Rachele Cera, Giuseppe Palmisano, The United Nations Convention on the Rights of Persons with Disabilities: A Commentary (Springer 2017) 249. 84 X v Argentina UN Doc CRPD/C/11/D/8/2012 (18 June 2014). 75 78
nizar
Article 10
299
persons with disabilities while in detention.85 The Committee confirmed a violation of the CRPD by reference to Argentina’s failure to provide sufficient accommodation, resulting in a breach of articles 9, 17, and 14(2). The Committee rejected the existence of a violation of article 10, along with articles 15 and 25, considering that Argentina had availed the complainant all available domestic remedies, further claiming that he had not substantiated all of his claims.86 The CRPD has categorized the right to life as a fundamental civil right. Significantly, in its absence the realization of all other rights is a non-starter.87 Hence, article 10 retains a significant interrelationship with other rights. The overarching obligation of the state to take effective measures to ensure the enjoyment of the right to life on an equal basis is the foundation for equality and non-discrimination as prescribed in article 5 CRPD. Non- discrimination is an integral part of the right to equality envisaged in the CRPD.88 Hence, the CRPD embraces both the formal and substantive approaches to equality.89 The more substantive approach specifically prohibits discrimination on the basis of disability.90 Article 5 CRPD on equality and non-discrimination is thus inextricably linked to the right to life. The interrelationship between articles 10, 5, and 25 has been analysed in research undertaken by this author,91 which challenged the legitimacy of disability-selective abortions. A pro-CRPD analysis on the legality of disability-selective abortions was done by examining the interplay between the right to life and its correlation to articles 5 and 25. The interrelationship between articles 10, 5, and 25 found that disability-selective abortions devalue persons with disabilities. An independent analysis of article 10 has provided an edge to charge disability-selective abortion as morally and legally problematic. The right to life was enunciated as a right to be born and the right to be different.92 Significantly, the CRPD maintains a studied silence on the primary prevention of disability, as prevention is not a disability rights issue, and hence, did not find place in the CRPD. This brilliant step shows the strong human rights perspective of the Convention. For the drafters it was deemed incoherent to deal at the same time with the termination of disability and the promotion of the rights of persons with disabilities.93
3.2 The Right to Life from the Perspective of Equality and Non-Discrimination Article 5 CRPD explicitly addresses the right to equality and non-discrimination. The Convention accords unequivocal rights of equality and non-discrimination to persons with disabilities. The rights to life, inherent dignity, equality, and non-discrimination accord high value to the lives of persons with disabilities. While the right to equality in general affirms that all human beings are born free and equal, the CRPD perspective of equality envisages the same rights and respect to accommodate persons with disabilities despite their diversity.94 Hence, the CRPD embraces both the formal and substantive approaches to equality. This means that laws, policies, and programmes should not be discriminatory, and also that public authorities should not apply or enforce laws, policies, and programmes in a discriminatory or arbitrary manner.95 The application
ibid. ibid 123. 93 ibid 128. 85 88
Art 2(d)(e) Optional protocol CRPD. 89 90 91 ibid 123. ibid. ibid. 94 95 ibid 123. ibid 123.
86
87
Nizar (n 1) 127. 92 ibid 128.
nizar
300
Right to Life
of non-discrimination principles and the references found in article 4 CRPD96 should ensure that abortion laws do not discriminate on the basis of disability.97 Thus, we can see that equality and non-discrimination form the touchstone on which national legal frameworks must be assessed. When viewed through this lens, the right to life combined with right to equality and non-discrimination renders disability-selective abortion questionable. In particular, the strong non-discrimination emphasis of the CRPD and international disability law in general98 enables questioning the blanket legal sanction for disability-selective abortion. This author has questioned the legality of disability-selective abortion, by drawing the contradictory legal order on sex-selective abortion. Whilst laws absolutely prohibit sex selection, they provide blanket permission for disability-selective abortions. In English law, the Abortion Act, 1967, provides intact provisions for selecting out a foetus with disabilities. Section 1(1)(d) of the law treats the physical or mental disability of the prospective child as a substantial risk. The substantial difference of English law from other laws, such as the Indian abortion law can be found in its ‘no time limit’ stand for disability-selective abortion. The original time limit of twenty-four weeks was revised, removing the upper time limit by introducing section 37 of the Human Fertilisation and Embryology Act, 1990. This shows the extent of the application of the law to prevent the birth of a person with disabilities and its undesirability towards life with disability. Although the Abortion Act does not apply in Northern Ireland, the majority of abortions are performed in Ireland on this ground. This is in furtherance of a 1938 well-known judgment, namely Rex v Bourne,99 which legalized abortions on grounds of ‘probable consequences of physical and mental wreck of women’. The human rights paradigm of the CRPD has been further strengthened by the interrelationship between articles 10 and 25, the latter concerning the right to health.100
96 ‘States Parties undertake . . . (a) To take all appropriate measures, including legislation, to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities; (b) To take into account the protection and promotion of the human rights of persons with disabilities in all policies and programmes.’ 97 Stefan Tromel, ‘United Nations Convention on the Rights of Persons with Disabilities’ (2009) 1 European Year Book of Disability Law 115, 121. 98 In Guberina v Croatia, [2016] ECHR 287, the ECtHR considered a claim of discriminatory tax legislation. The applicant in this case was the father of a child with disability. They lived on the third floor of an apartment building that was inaccessible due to lack of elevator, which forced the father to sell the flat and buy an accessible house. Croatian law provided tax exemptions to persons purchasing new property to solve ‘their housing problems’ and the applicant duly applied. His request was based on the ‘inaccessibility’ of the flat. However, the authorities rejected his request without considering his son’s right to have an accessible home. The ECtHR found that ‘the alleged discriminatory treatment of the applicant on account of the disability of his child, with whom he has close personal links and for whom he provides care, is a form of disability-based discrimination covered by Art 14 ECHR’. It is remarkable that the ECtHR decided the case from a disability law perspective, taking into consideration Croatia’s duties under the CRPD. It was held that Croatian authorities were obliged to give effect under an obligation to ‘reasonable accommodation, accessibility and non- discrimination against persons with disabilities with regard to their full and equal participation in all aspects of social life’. The ECtHR concluded that there was a breach of Art 14 ECHR (prohibition of discrimination) together with Article 1 of its Protocol 1 (right to property). 99 100 Rex v Bourne 3 All E R (1938) 615, 694–95. Nizar (n 1) 124.
nizar
Article 10
301
3.3 Right to Life and Right to Health of Disabled Persons The rights to life and health are interlinked, as both aim to dignify the lives of persons with disabilities. Article 25 CRPD states in part that: State parties recognize that persons with disabilities have the right to enjoyment of the highest attainable standard of health without discrimination on the basis of disability.
It further provides persons with disabilities the right of access to gender-sensitive, equal and non-discriminatory health services. The reference to reproductive health in article 25(a) CRPD is crucial, as there is an apprehension of international legitimization of abortion. A combined reading of the rights to life and health provided in the CRPD shows that the Convention only provided for secondary prevention of disability. Prevention envisaged under the right to health refers to minimizing further disabilities of persons with disabilities. Secondary prevention means and includes actions aimed at preventing impairments from causing permanent functional limitations or disability.101 No article in the Convention provides for the primary prevention of disability, as is otherwise the case with disability-selective abortion. The reason lies with the stand taken by the stakeholders of the Convention, who effectively agreed that primary prevention may have significance for society at large but had no place in a treaty concerned with the rights of persons with disabilities.102 Stefan Tromel, who represented the European Disability Forum, testifies: When it was first proposed to have an article on the right to life, this proposal met with some opposition. The right to life is a hugely controversial issue, as there is no agreement within the UN on when life starts, and to open such a debate immediately becomes a debate about the right (or not) to abortion and euthanasia. The presence of pro-life activists throughout the negotiation process was a permanent reminder of the delicate nature of this discussion.103
The presence of members from different countries holding these divergent views meant that it was next to impossible to reach agreement on an explicit article outlawing ‘forced abortion’ based on the prenatal diagnosis of disability. The right to life endorsed by the CRPD does not explicitly mention the thematic issue of selective abortion by reason of disability, as it was not possible to cover it without entering into the delicate and never- ending discussion on whether life starts at conception or at birth. Even so, the right to life accorded to persons with disabilities by the CRPD is a far- reaching one that recognizes the life of a person with disability as inherently worthwhile. The issues involved in disability selective abortions are not about the right to life of the foetus or right to abortion, it is about the right to life of persons with disabilities. This is significant, as can be analysed from the silence maintained by the CRPD on primary prevention of disabilities. The inclusion of a primary prevention provision would stigmatize persons with disabilities, negating disabled persons’ right to live. As commented by Tromel, ‘this was a deliberate decision taken by the Ad Hoc Committee and is one of the elements that reflect [sic] the paradigm shift from “disability” as an object to “persons with disabilities as subjects” ’.104 This particular stand envisaged under the CRPD evinces the strong inner connectivity between the right to life and the right to health. Accordingly, the CRPD human rights perspective protects a life with disability by affirming its inherent value and the measures to protect it from any further vulnerability. The wider human rights perspective of the CRPD 101 102
The UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities. 103 104 Nizar (n 1) 125. Tromel (n 97) 124. ibid 120.
nizar
302
Right to Life
thus opens the doors of jurisprudence to challenge any sophisticated practices to endanger a life with disabilities. That is why the aforesaid literature had been developed, even though the CRPD has neither banned nor mentioned anything on primary prevention of disability.
3.4 Right to Life and Quality of Life Though life is inherently valued, the quality-of-life argument is important to the lives of persons with disabilities.105 Contrasting the intrinsic value of human life, the quality-of- life judgment dominates in medical decisions to withhold treatment for newborns with disabilities, physician-assisted suicide and the ‘right to die,’ and prenatal testing for foetal disability. In such decisions, the life of an individual is valued based on its worth to fellow beings and to the individual himself but not on the basis of the intrinsic value of human life. The legality of withholding treatment to newborns with disabilities arose in a set of cases known as the ‘Baby Doe’106 cases in 1982 in the USA. The Infant Doe case, which commenced in 1982, was the first to draw significant political and legal attention to the issue.107 The right-to-life and disability-rights activists saw the case as proof that society was now falling down the slippery slope of disrespect for life. The court justified the decision of the parents as being in tune with the doctor’s advice, which made a quality-of life judgment about the life of their baby with disability. Article 10 CRPD is definitely a paradigm shift to break such diminishing perception about life with disabilities. Quality of life cannot be considered as a one-size-fits-all construct. People with disabilities often require more resources than other people because they need assistance, or assistive devices, or adaptation of social practices to engage in some of the fundamental activities of life.108 Even so, health economists continue to calculate the allocation of additional resources in terms of the right to healthcare not on the basis of the right to a healthy and quality life, but rather on the basis of two sets of metrics, namely the Quality Adjusted Life Years and Disability Adjusted Life Years. These will be explored in the following section.
3.4.1 Quality Adjusted Life Years (QALY) and Disability Adjusted Life Years (DALY) QALYs are used primarily to correct someone’s life expectancy based on the levels of health-related quality of life they are predicted to experience throughout the course of their life, or part of it.109 The DALY framework focuses on the equity implications of age-weighting and of the standard life expectancy assumption used in cross-country comparisons, but also on the methods used to assess disability weights.110 The DALY was Nizar (n 1) lii. Infant Doe v Bloomington Hospital, 464 US 961 (1983); United States v University Hospital, 729 F 2d 144 (1984); Bowen v Am Hosp Ass’n 476 US 610 (1986). 107 The case involved a child who was born with Down syndrome, as well as a tracheoesophageal fistula. In this condition, the upper part of oesophagus is not connected to the lower part. Though surgery to connect the oesophagus had a high prospect of success, the obstetrician pointed out to the parents that ‘if the surgery were performed and if it were successful and the child survived, that this still would not be a normal child’. Based on the obstetrician’s advice, the baby’s parents agreed not to authorize surgery, food, or water for the child. Nurses at the hospital initiated legal proceedings to override the parents’ decision, but the Indiana courts ruled that the parents had the right to follow the obstetrician’s recommendation. The baby died when he was six days old. 108 Michael Ashley Stein, ‘The Law and Economics of Disability Accommodations’ (2003) 53 Duke Law Journal 79. 109 Franco Sassi, ‘Calculating QALYs, Comparing QALY and DALY Calculations’ (2006) 21 Health Policy and Planning 402, 403. 110 ibid 403. 105 106
nizar
Article 10
303
developed as a measure of population health so that nonfatal outcomes could be considered alongside mortality in the prioritization of health resources. The former represent levels of quality of life enjoyed by individuals in particular health states, while the latter represent levels of loss of functioning caused by diseases. DALYs are composed of two components: (1) years of life lost due to premature death, and (2) years lived with disability (YLD) associated with nonfatal injuries and disease.111 QALYs are used in most economic evaluations, and by many regulatory agencies that have made cost-effectiveness analysis an integral part of their decision-making processes.112 The DALY is primarily a measure of disease burden (disability weights measure loss of functioning) but its use in cost-effectiveness analysis is also relatively common.113 Scholars argue that DALYs are incorrectly used to measure the magnitude, burden, or causes of disability.114 Accordingly, DALYs measure the perceived desirability of different health states and not disability as the term is used in public health practice.115 A standard illustration of the added expenses imposed by disability is the individual who must acquire a wheelchair to traverse distances ordinary citizens travel across on their legs.116 However, most accommodations are necessary only because of the manner that society has chosen to organize the structured environment to accommodate only the non- disabled majority. That is why the right to life and its comprehensive principles prioritize the best interest of persons with disabilities. For instance, let us consider the decision in Ormond Street Hospital (GOSH) v Chris Gard and Others.117 Charlie, an infant, was diagnosed with a fatal and rare inherited mitochondrial disease called infantile onset encephalo-myopathic mitochondrial DNA depletion syndrome, referred to generally as MDDS, caused by a mutation in the RRM2B gene. Charlie’s parents accepted that his quality of life was poor and not worth sustaining but disagreed with the assessment of the team at GOSH that further treatment was futile and that palliative care should be pursued.118 Instead, they wished to take Charlie to the United States for experimental nucleoside therapy treatment. The medical experts at GOSH were firm in their rejection of the proposed therapy, arguing that it was not in Charlie’s interests and sought for judicial intervention.119 The case was heard at all levels of the UK courts before progressing to the Family Division of the High Court.120 The European Court of Human Rights had earlier concluded that the issue must be determined on the foundational principle of the ‘best interests of the child’. The ECtHR held that: . . . whether the fair balance that must exist between the competing interests at stake—those of the child, of the two parents, and of public order—has been struck, within the margin of appreciation afforded to States in such matters, taking into account, however, that the best interests of the child must be of primary consideration.121
Finally, Francis J confirmed the original order rejecting the parents’ application to permit for an experimental treatment on Charlie. It was declared that ‘it was not in Charlie’s best
111 Scott D Grosse, Donald J Lollar, Vincent A Campbell, ‘Disability and Disability-Adjusted Life Years: Not the Same’ (2009) 124 Public Health Reports 197. 112 113 114 115 Sassi (n 109) 402. ibid. Grosse et al (n 111) 197. ibid. 116 117 Nizar (n 1) 109. [2017] EWHC 972 (Fam) Declaration (11 April 2017). 118 Natasha Hammond-Browning, ‘When Doctors and Parents Don’t Agree: The Story of Charlie Gard’, (2017) Bioethical Inquiry 2. 119 120 121 ibid. ibid 1. Gard and Others v U K ECHR application no 39793/17 [107].
nizar
304
Right to Life
interests to have nucleoside therapy and therefore it was lawful to withdraw artificial ventilation and provide palliative care only’.122 Paragraph 18 of the judgment reiterated the cardinal principle of the ‘best interests of the child’ as follows: In this country children have rights independent of their parents. Almost all of the time parents make decisions about what is in the best interests of their children and so it should be. Just occasionally, however, there will be circumstances such as here where a hospital and parents are unable to decide what is in the best interests of a child who is a patient at that hospital. It is precisely because the hospital does not have power in respect of that child that this hospital makes an application to the court, to an independent judge, for a determination of what is in that child’s best interests. In circumstances where there is a dispute between parents and the hospital, it was essential that Charlie was himself independently represented and a guardian was therefore appointed to represent Charlie so that there was someone who could independently report to the court as to what was in his best interests. Our judges are fiercely independent of the state and make decisions, having heard evidence and having considered the law.
However, protecting the best interests of persons with disabilities may immediately contradict the basic principles of the right to life in cases such as assisted suicide. At around the same time of the Baby Doe cases, disability rights activists began to oppose physician-assisted suicide and the so called right to die.123 They formed ‘Not Yet Dead’, an organization that opposes assisted suicide and euthanasia from a disability rights perspective.124 The disability rights critiques articulated a critique that is parallel to Baby Doe to contend that the practice of assisted suicide reflects a discriminatory belief that life with disability is not worth living.125
3.5 Right to Life and Assisted Suicide Assisted suicide and its legalization is the other instance that contravenes the sanctity-of- human life understanding. American cases have uniformly allowed competent patients to make quality-of-life judgments in determining whether to accept further life-sustaining medical intervention. This was the case, for example, when gangrene stricken patients declined surgical amputation, which could have preserved their lives for years.126 Similarly, quality-of-life decisions have been made by persons with disabilities—usually quadriplegics—who decided upon discontinuance of respirator support or artificial nutrition and hydration necessitated by their debilitating medical conditions.127 In 2005, the case of Terri Schiavo128 aroused the longstanding claim that any judgment that death is preferable to life violates the important concept of the inherent nature of the right to life. In this case, the court allowed the plea of the husband to allow Ms Schiavo to die, as her impoverished quality of life in a permanently unconscious state had ‘no value’. The Florida court’s acceptance of such a determination contravened society’s supposed respect for the intrinsic value of all human life. The right-to-life advocates contend that a quality-of-life ethic undermines the inherent value of life. However, it does not mean that See (n 12). Samuel R Bagenstos, ‘Disability, Life, Death, and Choice’, (2006) 29 Harvard Journal of Law & Gender 439. 124 125 ibid. ibid. 126 Lane v Candura 376 N E 2d 1232 (Mass App Ct 1978); In re Quackenbush 383 A 2d 785. 127 Bouvia v County of L A 195 Cal App 3d 1075, 241 Cal Rptr 239 (Cal App 1987); Georgia v McAfee, 385 S E 2d 651 (Ga 1989); Mackay v Bergstedt 801 P 2d 617 (Nev 1990). 128 Schindler v Schiavo (In re Schiavo) 780 So 2d 176, 180 (Fla Dist Ct App 2001). 122 123
nizar
Article 10
305
quality of life is not the parameter of life for persons with disabilities. Quality of life is equally relevant for persons with disabilities. It is an important parameter to adopt social justice measures. The quality of life of an individual is not solely tied to material wealth, but to the more elusive, but no less important, aspects of individual happiness and community belonging.129 It is a multidimensional construct that has the potential to move beyond being the concept of one’s personal situation. Persons with disabilities should be supported to have effective participation, which is equal to all others. Sometimes they may need support for matters that exclusively concern them. Social justice measures are significant for persons with disabilities, in order to ensure the best interests of persons with disabilities. Quality-of-life parameters would provide a conducive environment for persons with disabilities. This would lead to a social perception where anyone can think that disability is a fine human condition.130 That is what is encompassed by the right to life provision of the CRPD.
3.6 Right to Life Versus Pre-Natal Selection and Disability-Selective Abortion In disability-selective abortion, it is the ‘selectiveness’ in the abortion that is problematic. A woman should be free to decide about her child within the confines of her right to choose. Disability-selective abortions are systemic when social prejudice forces the mother to choose selectively. To remove this persisting prejudice against one group of persons requires appreciating the significance of equality on the right to life. Analysing the interrelation between articles 10, 5, and 25, disability-selective abortion is an explicit form of denial of the right to life of persons with disabilities. Therefore, disability- selective abortion laws devalue life with disabilities and consequently discriminate against disabled persons. That is why, despite the silence maintained by the CRPD on this issue, the CRPD Committee has given a wider interpretation to the right to life. A few cases stemming from reports submitted to the CRPD Committee may be used to reflect upon and elucidate various domestic practices. The Danish report demonstrated that the Danish Health Law provided mandatory options for obtaining supplementary information and advice from the relevant disability associations for a woman applying for permission to terminate her pregnancy after the end of the twelfth week of pregnancy on grounds of severe disability of the foetus.131 It was also reported that several initiatives were implemented, all of which aimed at preventing unwanted pregnancies and lowering the number of abortions performed within the time limit of a free abortion. Under the Danish Health Act, women may have an abortion carried out until the end of the twelfth week of pregnancy without permission. This is legally termed as ‘free abortion’, given that express permission is not required within this time limit. The initial report of Denmark comprised information on Denmark and the self- governed territories within the Kingdom, namely the Faroe Islands and Greenland. Under the pertinent abortion legislation, a woman living in Greenland is entitled to have an induced abortion if the procedure can be done before the end of the twelfth week of pregnancy. This time limit can be extended, if genetic conditions or disease during the foetal 129 David Braddock, Disability at the Dawn of the 21st Century and the State of the States (American Association on Mental Retardation 2002). 130 Nizar (n 1) 114. 131 ‘Initial Report submitted by Denmark’ UN Doc CRPD/C/DNK/1 (7 May 2013) para 120.
nizar
306
Right to Life
stage put the child at risk of a severe physical or mental disease.132 However, as part of CRPD-based implementation, women must now be informed about the regional social committee for counselling before proceeding with an abortion decision. The state must provide a woman with the options available to her in order for her to make an informed choice about proceeding or not with her pregnancy, as well as support after birth.133 In response to Denmark’s report, the CRPD Committee appreciated the efforts of Denmark to review and amend its legislation to comply with the CRPD. Whilst the Committee has not made any explicit observations on the right to life and related practices, it has raised concern about proper implementation. The major concern of the Committee was that: . . . the Convention is not explicitly incorporated into the laws of Denmark, the Faroe Islands and Greenland. It is also concerned at the insufficient information about the application of the Convention by the State party’s courts and authorities. The Committee notes with concern that officials of State, regional and municipal authorities are not sufficiently aware of their obligation to promote the implementation of the Convention.134
The Committee has also made observations, as below, on ‘equality and non-discrimination’ noting the status of certain rights.135 The Committee’s emphasis on equality and non- discrimination with a view to extending the efforts beyond the labour market is an obvious call to address the prejudice and discrimination in all spheres of the life of persons with disabilities. Croatia has reported that the right to life is guaranteed by its Constitution and is additionally strengthened by being a signatory to various human rights treaties that are an integral part of its legal system. Accordingly, Croatia’s contention is that persons with disabilities are not exposed to arbitrary deprivation of life, and moreover there exists no possibility of denial of immediate medical assistance to an ill person or a person requiring such assistance, due to the immediate danger for their life.136 Any such practice is considered under the Croatian Criminal Code (1997) a criminal act with a prescribed custodial sentence. However, according to the Law on Health Care Measures for the Exercise of the Right to Free Decision-Making About Giving Birth (1978) a woman may legally terminate pregnancy without permission if this is a pregnancy that lasts for less than ten weeks, in which case the abortion may be performed only in authorized healthcare institutions. Even so, no statistical data are kept in relation to abortions where there exist indications that a child is likely to be born with severe inborn, physical, or mental disabilities. Following legislative amendments, a plan of statistical surveys for 2011 was adopted, which will now make this possible.137 Towards this end, necessary pre-actions have been taken to supplement the abortion report form with questions on screening for chromosomopathies and resulting requests for abortions.138 South Africa’s Choice on Termination of Pregnancy Act, 1996, provides the basis for permission of abortions in the country, albeit it is limited to pregnancies in weeks thirteen 133 ibid para 409. ibid para 410. CRPD Committee, ‘Concluding Observations on the Initial Report of Denmark’ UN Doc CRPD/C/ DNK/CO/1 (30 October 2014) para 12. 135 ibid para 14. 136 ‘Initial Report of Croatia’ UN Doc CRPD/C/HRV/1 (7 May 2013) para 58. 137 ibid para 59. 138 ibid para 59; Croatia has reported that this will be possible upon amendments to its regulations and adoption of a Plan of statistical surveys. Other legally prescribed reasons such as rape and incest were also introduced in this form, The CRPD Committee has not made any concluding observations with respect to the report on the right to life and abortion laws of Croatia: see CRPD Committee, ‘Concluding Observations on the Initial Report of Croatia’ UN Doc CRPD/C/HRV/CO/1 (15 May 2015). 132 134
nizar
Article 10
307
to twenty.139 It was reported that, in general, there is an on-going moral debate within South African society, including its disability population, in respect of the counselling process on the choice to terminate disabled foetuses.140 South Africa has also reported that its Constitution recognizes and protects the right to life and survival of persons with disabilities on an equal basis with others.141 In Germany, the protection of life is comprehensively guaranteed at constitutional level by article 2(2), sentence 1, of the Basic Law. It affirms that: ‘Every person shall have the right to life and physical integrity.’ The right to life is also protected by sections 211 et seq of the Criminal Code.142 In its initial report to the CRPD Committee Germany reported its Penal Code protects unborn life143 but not unconditionally.144 The Pregnant Women’s and Families’ Amendment Act 1995 had abolished the explicit embryopathic indication for an abortion. The campaign was spearheaded by the Catholic Church and the disability lobby, both of whom oppose any worldview that see ‘abnormal’ foetus as having a reduced right to life.145 Since then, section 218(a)(2) permitted abortion within the first twenty-two weeks, on embryopathic grounds. That is, if it was very probable that for genetic reasons or in consequence of prenatal damage the child would suffer from such an incurable abnormality as to be so seriously handicapped, the pregnant woman should not be obliged to carry the child to a full term. This was facilitated by the Indication Model in the Old Bundesladnder 1976, which authorized doctors to provide an ‘indication certificate; sanctioning the medical reason for the abortion. Since the early embryopathic indication was abolished in 1995, the disability of the child as such is not a reason for a permissible abortion in Germany.146 Consequently, abortion is permitted if medical indication may exist in individual cases in accordance with the prenatal diagnosis demonstrating there is a serious risk to the life or health of the mother and this risk can only be countered by an abortion.147 The Pregnancy Conflict Act comprehensively regulates the right of the pregnant woman to receive advice in all possible questions concerned with the pregnancy and any conflict situations. It is worthwhile referring to a legal order that prohibits disability-based abortions. The Kenyan Constitution guarantees the right to life to every person in Kenya, including persons with disabilities.148 Kenya has reported that its 2010 Constitution has declared that abortion
Art 2(1)(a), The Choice on Termination of Pregnancy Act 1996. ‘Initial Report of South Africa’ UN Doc CRPD/C/ZAF/1 (26 November 2014) para 118; see also Keren L Lawson and Roger A Pierson, ‘Maternal Decisions Regarding Prenatal Diagnosis: Rational Choices or Sensible Decisions’ (2007) 29 J Obstet Gynaecol Can 240; Hilmar H Bijma, Agnes van der Heide, and Hajo I J Wildschut, ‘Decision-Making After Ultrasound Diagnosis of Fetal Abnormality’ (2007) 3 Eur Clinics Obstet Gynaecol 89–95; John Wyatt, ‘Medical Paternalism and the Fetus’ (2001) 27 Journal of Medical Ethics 15. 141 142 ibid para 117. The German Criminal Code ch VI s 211(1) and (2). 143 ‘Initial State Report of Germany’ UN Doc CRPD/C/DEU/1 (7 May 2013) para 88; it refers to the German Criminal Code s 218. 144 ibid, this provision expresses the official disapproval of abortion. However the proceeding provision, s 218(a) provides exceptions from liability for abortion on the ground of medical necessity. 145 Yael Hashiloni Dolev, A Life Worthy of Living: Reproductive Genetics in Israel and Germany (Springer 2009) 85. 146 The Pregnant Women’s and Families’ Amendment Act 1995. 147 German Criminal Code s 218(a)(2). The termination of pregnancy performed by a physician with the consent of the pregnant woman shall not be unlawful if, considering the present and future living conditions of the pregnant woman, the termination of the pregnancy is medically necessary to avert a danger to the life or the danger of grave injury to the physical or mental health of the pregnant woman and if the danger cannot reasonably be averted in another way from her point of view. 148 Art 26 Constitution of Kenya. 139 140
nizar
308
Right to Life
is illegal unless there is need for emergency treatment, or the life or health of the mother is in danger, or if permitted by any other written law as provided under article 26(4) of the Constitution. Article 26(1) of the Kenyan Constitution states that life begins at conception and can only be terminated in accordance with the law. No person can therefore be deprived of their right to life on account of their disability. Article 43(1) of the said Constitution further guarantees everyone the right to the highest attainable standard of health, which includes the right to health care services, including reproductive health care. It is only rarely that domestic laws do not support the blanket legal permission for disability-selective abortion. Significantly, Kenya has special legislation in place to protect the rights of children. The right to life and survival for children with disabilities is specifically recognized under section 4(1) of the Children’s Act, No 8 of 2001, which provides that every child shall enjoy an inherent right to life and it shall be the responsibility of the government and the family to ensure the survival and development of the child. Section 12 of the Act provides that a child with disabilities has the right to be accorded medical treatment free of charge and at a reduced cost whenever possible. To this end, the Kenyan government offers prenatal services to pregnant mothers, runs the Expanded Safe Motherhood programme and undertakes immunization against preventable diseases that cause disabilities in its health facilities.149 The rights to human life and human dignity form an indivisible and un-restrained fundamental right that is the source of and the condition for several additional fundamental rights in Hungary. Even though, the country’s pertinent constitutional provisions protect the life of foetus from the time of conception,150 other related laws permit abortion on grounds of disability. Its health care-related laws, such as the Health Act 1997,151 and the Foetus Life Act 1992152 makes abortion possible for a wider circle than in general for those foetuses deemed impaired or disabled.153 The Portuguese government has also reported shadow legislation establishing the boundaries for voluntary termination of pregnancy.154 A similar legal stance can be found
‘Kenya’s Initial Report to CRPD Committee’ UN Doc CRPD/C/KEN/1 (28 July 2014) para 114. Art II (Freedom and Responsibility) of the Kenyan Constitution 2011 states that: ‘Human dignity shall be inviolable. Every human being shall have the right to life and human dignity; the life of the foetus shall be protected from the moment of conception.’ 151 Act CLIV of 1997 on Health, (promulgated on 23 December 1997), ss 183–84, which facilitates termination of pregnancy to reduce the number of embryos or foetuses in multiple pregnancies. Section 187(4) (b) permits medical intervention and sterilization if the child born of the pregnancy would not be healthy. Accordingly, sterilization may be performed only after three months have elapsed from the date on which the application was submitted, except when a pregnancy that might occur in the interim would directly endanger the life, physical well-being or the health of the woman, or when it is highly probable that a child born of the pregnancy would not be healthy. 152 Act LXXIX of 1992 on the Protection of Foetal Life; section 6 of this law enumerates the conditions for termination of pregnancy on ‘genetic impairment’. The related provisions are as follows: 149 150
S 6(1)(b)—pregnancy may be terminated for genetic reasons up to the twelfth week if the foetus is physically likely to suffer serious disabilities or other impairment. S 6(2)(3)—pregnancy may be terminated up to the twentieth week if the probability of the foetus’s genetic or teratological impairment reaches 50 per cent; S 6(4)(b —pregnancy may be terminated up to delivery if the foetus shows a disorder incompatible with postnatal life. 153 ‘Initial State Report of Hungary to the CRPD Committee’ UN Doc CRPD/C/HUN/1 (28 June 2011) para 71. 154 ‘Initial State Report of Portugal to the CRPD Committee’ UN Doc CRPD/C/PRT/1 (10 September 2014) para 65.
nizar
Article 10
309
in Uganda’s domestic laws guaranteeing to all persons a right to life, making it clear that no person shall be deprived of his or her life intentionally nor terminate the life of an unborn child except and as may be authorized by law.155 India generally permits abortion on the ground protecting the life of the mother. However, the right to life in India has been strongly endorsed in article 21 of the Constitution, which declares that: ‘no person shall be deprived of his life or personal liberty except according to procedure, established by law’. India is among a handful of nations whose courts have expanded and linked the right to life with a variety of other rights, socio-economic as well as civil and political.156 In India, pre-natal diagnoses and abortions have been considered by Indian courts through a construction of pertinent Indian legislation157 as permitting disability-selective abortions. Since the origin of those abortion laws Indian courts have been in favour of selective abortions on the ground of disability, save for Nikhil D Dattar and Niketa Mehta v Union of India.158 In this case alone, the Bombay High Court had denied permission for abortion as the pregnancy had crossed the time limit of twenty weeks as provided by domestic law. The doctor and the parents requested termination of the pregnancy on the basis of the medical opinion that whereby there was a substantial risk if the child were born. The child would have allegedly suffered from such physical or mental abnormalities as to be seriously handicapped.159 However, the recent adjudication trend of the Indian courts shows a significant shift towards recognition of the inherent right to life for persons with disabilities. The Supreme Court of India denied permission to abort a foetus with Down’s syndrome.160 In this case, Constitution of the Republic of Uganda Art 22(1) and (2). The Supreme Court gave an expansive interpretation to the term ‘life’ in Francis Coralie Mullin v Administrator, Union Territory of Delhi and Ors, AIR 1981 SC 746, by extending it beyond mere ‘physical or animal existence’ and including the right to read, write, and express oneself and to lead a life of dignity. The Court held that ‘the right to life includes the right to live with human dignity and all that goes along with it, namely, the bare necessities of life such as adequate nutrition, clothing, shelter over the head, and facilities for reading, writing, and expressing oneself in diverse forms, freely moving about and mixing and commingling with fellow human beings’ (at 753). This view of extending the ambit of the right to life under Art 21 to beyond mere animal existence (bios) to include political, social, and cultural participation (zoee) was reiterated by the Supreme Court in Olga Tellis v Bombay Municipal Corporation [1985] 2 Supp SCR 51, where it held that ‘the inhibition against deprivation of life extends to those limits and faculties by which life is enjoyed’. One of the most crucial aspects of the expansion of the ambit of the right to life under Art 21 of the Constitution is the provision for inclusion of the social, political, and cultural life of the person. Thus, the fundamental right to life guaranteed to all persons under the Constitution includes the right to live with human dignity and to participate fully in the social, cultural, and political processes of the country. This goes beyond the biological concept of life encompassing only the vegetative state of being alive. As a result of such an expansion, the right to read, write, and fully express oneself becomes an integral part of the right to life under Art 21, because these rights are integral to a person’s active participation in the political, social, and cultural processes of the country or of his or her communities. Access to printed material is one of the most fundamental aspects of the right to read, write, and express oneself in order to form an informed opinion or make an informed choice in one’s political, cultural, or social life. When persons with print impairment are denied access to printed material in alternative formats, their fundamental right to life guaranteed to them under the Constitution is taken away from them since such denial of access will prevent their participation in the political and social aspects of their lives. Thus, it becomes an obligation on the part of the state to ensure that the fundamental rights of disabled persons are satisfied on an equal basis with other persons, by extinguishing any gap in the law preventing persons with print impairment from accessing information in the print format—see Nizar (n 1) 74–76. However, since it is too early to ban the existing domestic laws on disability-selective abortion, the newly enacted Indian law, namely The Rights of Persons with Disabilities Act, 2016, is silent on disability-selective abortion. 157 The PNDT Act 2004 and the MTP Act 1971. 158 159 (2008) 110(9) BOMLR 3293 (Bombay High Court). ibid para 16. 160 Savitha Sachin Patil and Another v Union of India, Writ petition (Civil) No 121/ 17 Order (28 February 2017). 155 156
nizar
310
Right to Life
the Court refused to allow aborting in week twenty-six of pregnancy because of the detection of Down’s syndrome. The Court emphasized that: ‘everybody knows that children with Down’s syndrome are undoubtedly less intelligent, but they are fine people . . . we have a life on our hands’.161 The trend was carried over to another case denying permission to abort a twenty-seven-week foetus with physical disability.162 These cases should augment the paradigm shift made by the CRPD in general and article 10 therefore in particular. However, it should be noted that the Indian domestic law that permits selective abortion dominates the right to life human perspective as postulated by the CRPD.163 It is worthwhile pointing out examples of legal orders where disability-selective abortion is not subject to the constitutional dictates of the right to life. The Korean report to the CRDP Committee acknowledges article 14(1)(1) of the Mother and Child Health Act, as well as article 15 of its Enforcement Decree, both of which allow induced abortions in exceptional cases within twenty-four weeks of pregnancy. The Korean government has amended the Enforcement Decree of the same Act in July 2009 to reduce the scope of induced abortions to cases where ‘a woman or her spouse has genetic disorders that will highly affect foetuses, such as achondroplasia and cystic fibrosis’ (article 15 (2)). In equal manner, Lithuania’s country report acknowledges that termination of pregnancy at a woman’s request is allowed until twelve weeks of pregnancy, whereas termination at a later stage is allowed only when there is a risk to a woman’s life or health. In order to facilitate this, a list of diseases or conditions causing risk to a pregnant woman and the foetus’s life and health, is approved by the state. Accordingly, abortions for other reasons are treated as illegal and are penalised.164 In Slovakia, whilst the state’s specific interest in the protection of life165 and health is incorporated in the Criminal Code,166 abortion is generally regulated in the country 161 ‘SC denies abortion nod to woman with Down Syndrome foetus’, The Hindu (28 February 2017), available at: (accessed 28 February 2017). The judgment is on file with the author. 162 Sheetal Shankar Salvi and Another v Union of India and Others, Writ Petition (Civil) No 174/17. However, it seems that, the Indian judiciary makes an effort to balance the rights of an unborn and the health risk of the mother. In yet another case, Sarmishtha Chakrabortty v Union Of India Secretary (Writ Petition (c) No 431/ 2017, the court has permitted terminating her pregnancy as the continuation of pregnancy may have caused severe mental injury. The foetus was diagnosed with cardiac anomaly with suggestion of Teralogy of Fallot. 163 It is a trend in the Indian judiciary to reflect this social prejudice in persons with disabilities, as society has already internalized the legal order on disability-selective abortion. 164 Art 142 of the Lithuanian Criminal Code. 165 The right to life is guaranteed by Art 15(1) of the Constitution of the Slovak Republic. In addition to this the law of the Slovak Republic does not allow any form of euthanasia and assisting suicide. Assisting suicide is a crime punished under s 154 of the Criminal Code. However, the Slovak Republic puts into practice a comprehensive plan to take care of unwanted children. The country report submitted by the Slovak Republic explains that, in January 2012 sixteen ‘safety nests’ (baby boxes) operated in Slovakia based on cooperation with the civic association ‘Chance for unwanted’ (Šanca pre nechcených). These are public incubators connected directly to the hospital departments for new-born care and mothers who are unable to cope with a child and can place their new- born there without risk to the child’s life or health. The actions of a person who places a child in a ‘safety nest’ can be viewed as circumstances excluding criminal liability because it is an exercise of rights and duties in accordance with s 28 of the Criminal Code. By January 2012 the ‘Safety Nests’ saved up to thirty-four children, one of which was a child with disabilities. Support for the ‘Safety Nest’ project in the Slovak Republic is part of the system of measures for the protection of the lives of unwanted children (including children with disabilities). It should be noted that India has also arranged for a remedial plan to save children in circumstances similar to Slovak’s ‘safety nests’. In India many of its states have ‘mothers’ cradles’ to save unwanted children. However, children with disabilities are less likely to be saved in this manner, as disability-selective abortion is effectively permitted. 166 Part II of Act No 300/2005 Criminal Code protects the life and health of its citizens. The said provisions are divided as follows: Division 1. Crimes against life (§§144–54), Division 2: Crimes against health (§§155– 60), Division 3: Crimes threatening life and health (§§161–78).
nizar
Article 10
311
on the basis of the Act on Artificial Termination of Pregnancy.167 Abortion is permitted on the grounds of protection of women’s life and in the interest of planned and responsible parenting.168
3.7 ‘on an equal basis with others’ This significant human rights purview of the CRPD has been explicit in the Committee’s concluding observations. In one case it focused on the Spanish Sexual and Reproductive Health Act of (Organic Act 2/2010) which decriminalized voluntary termination of pregnancy and which allowed pregnancy to be terminated up to fourteen weeks. The same Act, however, permitted abortion up to twenty-two weeks of pregnancy if foetal disability was discovered. Noticing the longer time limits allowed for terminating pregnancies when the foetus has a disability, the CRPD Committee raised the question of whether Spain considered this to be in line with article 4(1)(d) CRPD.169 When the Committee considered the reports submitted by Spain under article 35 of the Convention, it recommended that Spain ‘abolish the distinction made in the law in the period allowed within which a pregnancy can be terminated based solely on disability’.170 It is pertinent to note that the Committee addressed the problem related to the right to life by not directly referring to the right to life but rather to equality and non-discrimination. However, in several other cases the Committee has made an explicit reference to article 10 CRPD, as will be shown in subsequent sections.
3.8 Medical Interventions The CRPD Committee has adopted a number of concluding observations from 2011 to 2017 on various provisions of the CRPD. Article 10 has also been cited in many cases. While considering the initial report of Spain, the Committee in its concluding observations referred to article 10 in connection with the issue of informed consent in medical treatment. It noted as follows: The Committee welcomes the fact that Act 26/2011 amends regulations to contain provisions to reflect the right to accessibility when granting informed consent to medical treatment. It however regrets that guardians representing persons with disabilities deemed ‘legally incapacitated’ may validly consent to termination or withdrawal of medical treatment, nutrition or other life support for those persons. The Committee wishes to remind the State party that the right to life is absolute, and that substitute decision-making in regard to the termination or withdrawal of life-sustaining treatment is inconsistent with this right [emphasis added].171
Act No 73/1986 Zb on the artificial termination of pregnancy, as amended. However, unwarranted abortion is a crime pursuant to ss 150–53 of the Criminal Code of the Slovak Republic. 169 Under Art 4(1) CRPD states parties undertake to ensure and promote the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability. To this end, states parties undertake: . . . (d) To refrain from engaging in any act or practice that is inconsistent with the present Convention and to ensure that public authorities and institutions act in conformity with the present Convention. 170 CRPD Committee, ‘Concluding Observations on the Initial Report of Spain’ UN Doc CRPD/C/ESP/ CO/1 (19 October 2011) para 18. It recommended that the State party: ‘abolish the distinction made in Act 2/ 2010 in the period allowed under law within which a pregnancy can be terminated based solely on disability’. 171 CRPD Committee, ‘Concluding Observations on the Initial Report of Spain’ UN Doc CRPD/C/ESP/ CO/1 (19 October 2011) para 29. 167 168
nizar
312
Right to Life
The Committee has further requested the state party to ensure that the informed consent of all persons with disabilities is secured on all matters relating to medical treatment, especially withdrawal of treatment,172 nutrition, or other life support.173 In Pretti v The United Kingdom the applicant, who was at the last stage of motor neuron disease wished to opt for assisted suicide. She required her husband’s help. Suicide was not a crime in English law, but assisting suicide is. Hence the applicant’s husband was certain to be prosecuted for murder. Since permission was denied for assisting suicide, the applicant complained that the denial of request for assisting suicide is a denial of the right to life. The ECtHR held that, ‘there had been no violation of article 2 ECHR (right to life), finding that the right to life could not, without a distortion of language, be interpreted as conferring the diametrically opposite right, namely a right to die’.174
3.8.1 Medical Assistance to End Life by Reason of Disability The CRPD Committee was concerned with the adoption of legislation to provide medical assistance in dying, including on the grounds of disability in Canada.175 It has also commented on the absence of regulations for monitoring medical assistance in dying, the absence of data to assess compliance with the procedural safeguards regarding such assistance, and the lack of sufficient support to facilitate civil society engagement with and monitoring of this practice.176 The Committee has recommended as follows: 24 (a) Ensure persons who seek an assisted death have access to alternative courses of action and to a dignified life made possible with appropriate palliative care, disability support, home care and other social measures that support human flourishing; (b) Establish regulations pursuant to the law requiring collection and reporting of detailed information about each request and intervention for medical assistance in dying; (c) Develop a national data standard and an effective and independent mechanism to ensure that compliance with the law and regulations is strictly enforced and that no person with disability is subjected to external pressure.177
Similarly, in response to the initial report submitted by the United Kingdom and the Netherlands, the Committee noted with concern that the substituted decision-making applied in matters of termination or withdrawal of life-sustaining treatment and care was inconsistent with the right to life of persons with disabilities as equal and contributing members of society.178 The Committee recommended that: . . . the State party adopt a plan of action aimed at eliminating perceptions towards persons with disabilities as not having ‘a good and decent life’ and recognizing persons with disabilities as equal
Lambert and Others v France (1998) 30 EHRR 346. CRPD Concluding Observations on Spain (n 176) para 30; it is appropriate to examine the interpretation of the right to life by the European Court of Human Rights. 174 Pretti v United Kingdom [2002] ECHR 423 paras 39 and 42. 175 CRPD Committee, ‘Concluding Observations on the Initial Report of Canada’ UN Doc CRPD/C/ CAN/CO/1 (8 May 2017) para 23. 176 177 ibid. ibid para 24. 178 CRPD Committee, ‘Concluding Observations on the Initial Report of the United Kingdom of Great Britain and Northern Ireland’ CRPD/C/GBR/CO/1 (3 October 2017) para 26. 172 173
nizar
Article 10
313
to others and part of the diversity of humankind. It also recommends that the State party ensure access to life-sustaining treatment and/or care.179
3.9 Killing Newborn with Disabilities The Committee has addressed more issues concerning violations of the right to life motivated by persistent prejudices against persons with disabilities. It has shown grave concern at reports of killing of newborn children with disabilities at the most remote communities in Bolivia.180 In response to those practices, the Committee urged the state party to strengthen measures to protect children with disabilities and guarantee their right to life.181 It recommended that Bolivia adopt awareness-raising and educational measures for families of children with disabilities and their communities.182 It also recommended that the state party provide the necessary assistance to the families of children with disabilities to ensure that they have general information, services, and support in their family life and in attaining an adequate and dignified standard of living.183
ibid para 27. CRPD Committee, ‘Concluding Observations on the Initial Report of the Plurinational State of Bolivia’ UN Doc CRPD/C/BOL/CO/1 (4 November 2016) para 23. 181 ibid para 24. 182 ibid para 24. 183 ibid para 24. 179 180
nizar
Article 11 Situations of Risk and Humanitarian Emergencies States Parties shall take, in accordance with their obligations under international law, including international humanitarian law and international human rights law, all necessary measures to ensure the protection and safety
of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies and the occurrence of natural disasters.
1. Introduction 2. Background and Travaux Préparatoires 3. Persons with Disabilities in Situations of Risk 4. ‘obligations under international law’ 4.1 ‘international humanitarian law’ 4.2 ‘international human rights law’ 5. ‘take all necessary measures’ to Ensure the Protection and Safety of Persons with Disabilities 6. ‘situations of armed conflict, humanitarian emergencies’ 6.1 ‘natural disasters’ 7. Persons at Risk 7.1 Refugees, Asylum Seekers, Migrants, and Internally Displaced Persons with Disabilities in Situations of Risk 7.2 Women and Girls with Disabilities in Situations of Risk 7.3 Children with Disabilities in Situations of Risk
314 316 318 319 320 323 327 330 332 334 334 337 337
1. Introduction Article 11 CRPD is a unique human right, which for the first time creates obligations in situations of risk, including humanitarian emergencies and natural disasters, and permits of no derogation in times of emergency.1 While article 11 can be viewed as a distillation of various different human rights obligations applicable in risk situations, the formulation of this right also reflects a new awareness that persons with disabilities are an issue for human rights organizations in risk and disaster situations. In most of humanitarian and disaster programming prior to the CRPD, persons with disabilities had been completely ignored, as evidenced during the Asian Tsunami, where shelters, latrines, and medical
1 Statement of the Committee on the Rights of Persons with Disabilities on disability inclusion for the World Humanitarian Summit (Adopted during the Committee’s 14th session, held, from 17 August to 4 September 2015 in Geneva) 1; see also Mary Crock, ‘The Protection of Vulnerable Groups’ in Susan C Breau and Katja LH Samuel (eds), Research Handbook on Disasters and International Law (Edward Elgar 2016) 386.
motz
Article 11
315
centres where not accessible to persons with mobility impairments.2 Article 11 CRPD therefore constitutes a crucial step in recognizing persons with disabilities as holders of non-derogable human rights also in risk situations.3 While article 11 CRPD is novel as a single human right, this is not the first time that the issue of persons with disabilities in emergency situations surfaced as a concern. The first Special Rapporteur on Disability, Bengt Lindqvist, raised it as a gap in the Standard Rules on the Equalization of Opportunities for Persons with Disabilities towards the end of his tenure.4 In response to his concerns, a Supplement to the Standard Rules with the title ‘Reaching the Most Vulnerable: Proposed Supplement to the Standard Rules on the Equalization of Opportunities for Persons with Disabilities’ was drafted. The Supplement expressly referred to ‘sustainable solutions’ and the attainment of self-sufficiency for homeless persons, displaced persons, and refugees with disabilities.5 It further included a section on ‘Emergency situations’ which stressed that persons with disabilities are often forgotten or neglected in general relief programmes and that policies and guidelines should be developed together with UNHCR and UNDP for the inclusion of support measures with regard to persons with disabilities in emergency situations, including medical treatment and other support. Since the adoption of article 11 CRPD, important policy developments have taken place regarding persons with disabilities in situations of conflict or disaster. For instance, persons with disabilities have been expressly referred to in the Sendai Framework for Disaster Risk Reduction 2015–30, the Charter on Inclusion of Persons with Disabilities in Humanitarian Action, the Sphere Handbook,6 and the Code of Conduct for the International Red Cross and Red Crescent Movement and NGOs in Disaster Relief.7 This is crucial, as otherwise persons with disabilities in emergency situations too often remain neglected, as was for instance the case in New Orleans during Hurricane Katrina when persons with disabilities were also left behind and died.8
2 See Michael Ashley Stein and Janet E Lord, ‘Enabling Refugee and IDP Law and Policy: Implications of the U.N. Convention on the Rights of Persons with Disabilities’ (2011) 28 Arizona Journal of International and Comparative Law 401 429–30. 3 Giovanni C Bruno, ‘Article 11 [Situations of Risk and Humanitarian Emergencies]’ in Valentina Della Fina, Rachele Cera, and Giuseppe Palmisano (eds), The United Nations Convention on the Rights of Persons with Disabilities: A Commentary (Springer 2017) 254. 4 ECOSOC, Comm for Soc Dev, ‘Final Report of the Special Rapporteur of the Commission for Social Development on Monitoring the Implementation of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities on His Second Mission, 1997–2000’ UN Doc E/CN 5/2000/3 (8–17 February 2000) para 119. 5 ECOSOC, Comm for Soc Dev, ‘Report of the Special Rapporteur of the Commission for Social Development on Monitoring the Implementation of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities on the Third Mandate, 2000–2002, Annex: Reaching the Most Vulnerable: Proposed Supplement to the Standard Rules on the Equalization of Opportunities for Persons with Disabilities’ UN Doc E/CN 5/2004/4 (9 January 2002) para 18. 6 The Sphere Project, ‘The Sphere Handbook: Humanitarian Charter and Minimum Standards in Humanitarian Response’ (2011 edn), available at: . 7 International Federation of Red Cross and Red Crescent and Societies and the ICRC, ‘Code of Conduct for the International Red Cross and Red Crescent Movement and NGOs in Disaster Relief ’, available at: . 8 UN Office for Disaster Risk Reduction, ‘UN Global Survey Explains Why So Many People Living with Disabilities Die in Disasters’ Press Release (10 October 2013), available at: ; Stein and Lord (n 2) 405–06.
motz
316
Situations of Risk and Humanitarian Emergencies
2. Background and Travaux Préparatoires During the negotiations of the CRPD, the situation of persons with disabilities in armed conflict was first mentioned in the first session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities (‘Ad Hoc Committee’). A document summarizing the ‘Human Rights of Persons with Disabilities’ referred to the rights of children, including disabled children, in armed conflict pursuant to article 38 of the UN Convention on the Rights of the Child (‘CRC’).9 At the second session of the Ad Hoc Committee, various states and NGOs submitted proposals for elements of the Convention, which stressed the need to take account of the situation of persons with disabilities in situations of armed conflict, the increased incidence of disability during inter alia systematic human rights violations and armed conflicts, and the need for recognition of the vulnerability of persons with disabilities in situations of crisis, such as conflict and disasters and necessary adaptations to public services, facilities, and urban outfitting, in emergency situations for persons with disabilities.10 Also, at the second session a Working Group was established in August 2003 in order to prepare a draft text of the Convention between the second and third Ad Hoc Committee sessions. The draft text presented to the Ad Hoc Committee in January 2004 did not yet contain an article on the rights of persons with disabilities in situations of risk.11 Instead, a footnote to the right to life suggested that there should be a separate article dealing with the protection of the rights of persons with disabilities in armed conflict and that such article could also deal more broadly with the protection of the rights of groups at particular risk.12 In fact, in the context of the discussions on the right to life some members of the Working Group, in particular the NGO Landmine Survivors, had suggested the inclusion of a separate article dealing with the rights of persons with disabilities in armed conflict similar to the provision in article 38(4) CRC and article 3(1)(a) of the Geneva Convention Relative to the Treatment of Prisoners of War.13 At the fourth session of the Ad Hoc Committee in 2004, various proposals were put forward in relation to the right to life in draft article 8 during the first reading of the draft text of the Convention.14 Chile, China, and Syria supported a proposal of Jordan 9 Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, ‘Human Rights of Persons with Disabilities: Documents of the First Session’ UN Doc A/AC265/CRP 2 (revised 10 July). 10 Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, ‘Compilation of Proposals for Elements of a Convention’ (15 January 2004), available at: . 11 Working Group on Convention, ‘Report of the Working Group to the Ad Hoc Committee; Annex I: Draft Articles for a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2004/WG/1 (16 January 2004). 12 ibid fn 31. 13 Working Group on Convention, ‘Daily Summary Related to Draft Article 8 Right to Life, Prepared by Landmine Survivors Network’ (13 January 2004), available at: . 14 Fourth Session of the Ad Hoc Committee, ‘Daily Summary of Discussions Related to Article 8, Right to Life, Prepared by Landmine Survivors Network’ (25 August 2004), available at: .
motz
Article 11
317
to include in the right to life a reference to the effective enjoyment of the right to life ‘in situations of armed conflict and natural disasters in accordance with international law, human rights, refugee and international humanitarian law’. However, the United States, New Zealand, Canada, and Lebanon were against extending the right to life to situations of poverty or armed conflict. Japan, the EU, Mexico, and Yemen also expressed concern over including such situations of risk in the right to life, but were in favour of including them in a separate article, while Yemen and Palestine wanted to add foreign occupation as a further situation of risk.15 This was further discussed at the fifth session of the Ad Hoc Committee with disagreement on two aspects: firstly, as to whether a separate article should be included for risk situations and secondly as to whether express mention should be made of specific risk situations, or whether instead these should be referred to in a general formulation, such as ‘high-risk situations, in which persons with disabilities require extra protection’.16 As the Coordinator summarized these discussions he pointed out that ‘there was no opposition to including these issues in other areas of the Convention or in a separate article’.17 As a possible model for a separate article on the rights of persons with disabilities in risk situations, he proposed a distinct article after the right to life (draft article 8) as article 8(bis).18 In the report of the Coordinator to the Ad Hoc Committee at its fifth session, the following draft version of article 8(bis) was proposed:19 States parties recognize that in situations of risk to the general population persons with disabilities are especially vulnerable and shall take all feasible measures for their protection.
The formulation ‘all feasible measures’ was taken from article 38(4) CRC which provides that ‘states parties shall take all feasible measures to ensure protection and care of children who are affected by an armed conflict’ in accordance with international humanitarian law obligations to protect the civilian population in armed conflict.20 In the context of draft article 12(3), concerning measures to promote rehabilitation etc, situations of emergency, such as armed conflict and foreign occupation were also mentioned, but it was agreed that these would be discussed in the context of draft article 8.21 Draft article 8(bis) was next considered at the seventh session of the Ad Hoc Committee in 2006. The Chair of the Committee suggested a version of the text very similar to the one in the fifth session but with square brackets indicating the possibility of inserting a list of specific risk situations.22 The Committee reached general agreement that there should ibid. Fifth Session of the Ad Hoc Committee, ‘Daily Summary of Discussion at the Fifth Session’ (24 January 2005), available at: . 17 Fifth Session of the Ad Hoc Committee, ‘Daily Summary of Discussion at the Fifth Session’ (25 January 2005), available at: . 18 ibid. 19 Fifth Session of the Ad Hoc Committee, ‘Report of the Ad Hoc Committee on Its Fifth Session’ UN Doc A/AC265/2005/2 (23 February 2005) Annex II, para 12, available at: . 20 21 ibid Annex II paras 12–14. ibid Annex II fn a. 22 At the seventh session of the Ad Hoc Committee, the draft text of Art. 11 read: ‘States Parties recognize that in situations of risk to the general population [, including situations of . . . ,] persons with disabilities are a group in especially vulnerable circumstances and shall take all feasible measures for their protection’; see Ad Hoc Committee, ‘Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on Its Seventh Session’ Annex II, draft Art. 11, available at: . 15 16
motz
318
Situations of Risk and Humanitarian Emergencies
be a separate article, now draft article 11, addressing situations of risk for persons with disabilities.23 However, there was still disagreement as to whether specific risk situations should be enumerated and whether foreign occupation should be included as example of a risk situation.24 The negotiations concluded without specific agreement on these points and the Chair reaffirmed the proposal of using ‘groups in vulnerable circumstances’.25 At its eighth session, the Ad Hoc Committee adopted a draft of the Convention without a vote and decided to establish an open-ended drafting group, which held closed meetings in order to establish a final draft.26 At its resumed eighth session on 5 December 2006, the current version of the text, with specific mention of risk situations, was proposed by the Chair of the Committee and adopted together with the rest of the Convention. The issue of foreign occupations was included in preambular paragraph (u) on peace and security.27
3. Persons with Disabilities in Situations of Risk There are several reasons why it is important to spell out the rights of persons with disabilities in times of conflict and emergency. First, while persons with disabilities legally have the same rights in such risk situations as everyone else, in practice they are often excluded from emergency responses through lack of information, accessibility, and reasonable accommodation.28 Indeed, persons with disabilities belong to one of the most disproportionately affected populations in situations of disaster, conflict, or emergency.29 In crisis situations, three-quarters of persons with disabilities do not have adequate access to basic assistance, including water, shelter, sanitation, and food, and half of the persons do not have access to disability-specific services, such as rehabilitation or assistive devices.30 This also results in higher mortality rates. During the 2011 Japan earthquake and tsunami the mortality rate of persons with disabilities was at least twice that of the rest of the population (with up to five times more than the rest of the population due to a lack of information or accessible means of evacuation).31 ibid. Ad Hoc Committee, ‘UN Convention on the Human Rights of People with Disabilities Ad Hoc Committee—Daily Summaries Prepared by Rehabilitation International’ 17 January 2006 Art 11—Situations of Risk, available at: . 25 ibid. 26 UN Enable, Drafting Group, available at: . 27 Which reads: ‘Bearing in mind that conditions of peace and security based on full respect for the purposes and principles contained in the Charter of the United Nations and observance of applicable human rights instruments are indispensable for the full protection of persons with disabilities, in particular during armed conflicts and foreign occupation.’. 28 Statement of the Committee on the Rights of Persons with Disabilities on disability inclusion for the World Humanitarian Summit (n 1); Joint Statement by the Committee on the Protection of the Rights of All Migrant Workers and Members of their Families (CMW), and the CRPD Committee, ‘Addressing Disabilities in Large-Scale Movements of Refugees and Migrants’ (12 April 2017) 2; Stein and Lord (n 2) 407–08. 29 Statement of the Committee on the Rights of Persons with Disabilities on disability inclusion for the World Humanitarian Summit (n 1); Charter on Inclusion of Persons with Disabilities in Humanitarian Action. 30 UN Division for Social Policy and Development Disability, Disability-Inclusive Humanitarian Action, available at: (accessed 20 April 2017); Stein and Lord (n 2) 407–10. 31 UNDESA, UNISDR in collaboration with Indonesia, Norway, and the Nippon Foundation, ‘Report of Panel Discussion on Disaster Resilience and Disability: Ensuring Equality and Inclusion’ (10 October 2013) 10. 23 24
motz
Article 11
319
Further, such situations often result in an increase of disabilities.32 For instance in Haiti, approximately 200,000 people have suffered long-term disabilities as a result of the injuries obtained during the 2010 earthquake.33 In the context of armed conflicts, it is estimated that for every child killed in warfare, three are injured and permanently disabled.34 As regards Syrian refugees, it has been estimated that the number of disabled persons consists of 22 per cent of the Syrian refugee population, much higher than the general average of 15 per cent.35 In addition, countries in receipt of humanitarian aid display a higher proportion of persons with disabilities.36 Finally, during situations of conflict or emergency, negative attitudes towards persons with disabilities may escalate. Persons with disabilities are particularly vulnerable to abuse in such situations.37 The barriers such persons and their families face in situations of risk are ‘rarely acknowledged or included when assessing the impact of emergencies on populations’.38 In the drafting process, article 11 CRPD was initially modelled on article 38(4) CRC, which addresses the situation of children in situations of armed conflict. However, article 11 CRPD ended up being worded more broadly and strongly than its counterpart in article 38(4) CRC. First, article 38(4) CRC only refers to obligations under ‘international humanitarian law’, whereas article 11 CRPD also refers to obligations under ‘international human rights law’. Secondly, article 11 CRPD goes beyond the scope of article 38(4) CRC by not being limited to situations of armed conflict, but extending to other situations of risk, such as humanitarian emergencies and situations of natural disasters. Finally, article 11 CRPD imposes stronger obligations on states parties by requiring them to take ‘all necessary measures’, while article 38(4) CRC provides for a weaker obligation of taking ‘all feasible measures’.39
4. ‘obligations under international law’ The obligations under article 11 CRPD have to be interpreted in light of the states parties’ obligations under international law in general. This express reference to obligations under international law allays fears that the CRPD Committee would otherwise venture
32 Statement of the Committee on the Rights of Persons with Disabilities on disability inclusion for the World Humanitarian Summit (n 1). 33 UN Division for Social Policy and Development Disability, Disability-Inclusive Disaster Risk Reduction and Emergency Situations, available at: (accessed 20 April 2017). 34 Don MacKay, ‘The United Nations Convention on the Rights of Persons with Disabilities’ (2007) 34 Syracuse Journal of International Law and Commerce 323, 326. 35 Brookings Institute, ‘Disabled and Forcibly Displaced’ (27 October 2016). 36 Statement of the Committee on the Rights of Persons with Disabilities on disability inclusion for the World Humanitarian Summit (n 1); lower-income countries have a higher prevalence of disability than higher- income countries: World Health Organization, 10 Facts on Disability (2013), available at: . 37 ECOSOC Comm for Soc Dev (n 5) section E, paras 35–37. 38 Statement of the Committee on the Rights of Persons with Disabilities on disability inclusion for the World Humanitarian Summit (n 1). 39 Something that has been criticized as weakening existing international humanitarian law obligations and which the CRC Committee has interpreted as nevertheless imposing stronger obligations, see Fiona Ang, A Commentary on the United Nations Convention on the Rights of the Child, Article 38: Children in Armed Conflicts (Brill/Martinus Nijhoff Publishers 2005) 61–62.
motz
320
Situations of Risk and Humanitarian Emergencies
beyond its mandate by considering other norms of international law that could be pertinent to a construction of article 11 CRPD.40 Article 11 specifically lists two international law regimes: international humanitarian law (‘IHL’) and international human rights law (‘IHRL’). But the list is only exemplary, not exhaustive (‘including . . .’) and other international law rules may be drawn upon. For instance, international refugee law is a further area of law, which impacts on the interpretation of article 11 CRPD (see further below). Indeed, any rule of international law, which protects the rights of persons in situations of risk, may be referred to when interpreting article 11. Article 11 CRPD foresees the simultaneous application of several international law regimes. This overlap raises the question of the relationship between different legal regimes. For instance, IHRL also applies in situations of war, where IHL applies. In this context, the International Court of Justice has made it clear that IHL is a lex specialis to IHRL.41 Where the scope of protection of IHL and IHRL is coextensive, international humanitarian law obligations and international human rights law as well as international refugee law obligations coexist and may complement each other.42 Conflicts between these regimes have proven to be extremely rare.43
4.1 ‘international humanitarian law’ International humanitarian law is one of the two regimes expressly referred to in article 11 CRPD. IHL applies in international armed conflicts. Such conflicts exist, when one state uses armed force against another state or when there is total or partial military occupation, which is not met with armed resistance.44 It is not pertinent whether the states consider themselves to be at war.45 However, in a non-international armed conflict, the parties to the conflict are still bound by fundamental humanitarian provisions of international law.46 In addition, regular forces are still bound by international humanitarian law in the conduct of military operations. As will be seen below, IHL takes as a starting point the outdated medical model of disability. However, read through the lens of article 11 CRPD, IHL protections are being transformed into ‘rights’.47 40 Naomi Hart et al, ‘Making Every Life Count: Ensuring Equality and Protection for Persons with Disabilities in Armed Conflicts’ (2014) 40 Monash University Law Review 149, 157, note that this was a concern in the context of the Inter-American Court of Human Rights and point out that the CRC Committee has also pronounced itself on IHL norms in the context of Art 38 CRC. 41 Legal Consequences of the Construction of a Wall in the Occupied Palestinian Territory, Advisory Opinion ICJ Rep 2004 136 (International Court of Justice) para 106. 42 Crock (n 1) 387; more generally see Vincent Chetail, ‘Armed Conflict and Forced Migration—A Systematic Approach to International Humanitarian Law, Refugee Law, and International Human Rights Law’ in Andrew Clapham and Paola Gaeta (eds), Oxford Handbook of International Law in Armed Conflict (OUP 2014). 43 44 Chetail (n 42) 702. Common Art 2 (2) of the 1949 Geneva Conventions. 45 Common Art 2 (1) of the 1949 Geneva Conventions. 46 Common Art 3 of the 1949 Geneva Conventions; and see Protocol Additional to the Geneva Conventions of 12 August 1949, and relating to the Protection of Victims of Non-International Armed Conflicts (Protocol II) 1977; see also Prosecutor v Tadic Appeals Chamber Judgment of 15 July 1999 Case No IT-94-1-A, 105 ILR 419 finding that violations of customary international law in a non-international conflict constituted war crimes. 47 Hart et al (n 40) 152–53; see also ICRC, ‘How Law Protects Persons with Disabilities in Armed Conflict’ (13 December 2017), available at: on the commonalities between the CRPD and IHL and with an analysis of how IHL protects persons with disabilities.
motz
Article 11
321
One of the core provisions in IHL (applicable in non-international armed conflicts) is article 3 common to the four 1949 Geneva Conventions.48 Common article 3 provides that non-combatants, including members of armed forces who have been placed ‘hors de combat by sickness, wounds, . . . or any other cause’ shall be ‘treated humanely, without any adverse distinction founded on race, colour, religion or faith, sex, birth or wealth or any other similar criteria’.49 Read together with article 11 CRPD and in the light of the CRPD as a whole, ‘any other similar criteria’ is to be interpreted so as to include adverse distinctions based on disability.50 In relation to such non-combatants, common article 3 prohibits various human rights violations, in particular ‘violence to life and person, . . . cruel treatment and torture’ and ‘outrages upon personal dignity, in particular humiliating and degrading treatment’.51 Further, it requires that ‘the wounded and sick be collected and cared for’.52 In addition, all of the wounded and the sick must receive ‘to the fullest extent practicable and with the least possible delay, the medical care and attention required by their condition’. Any distinctions, except those on medical grounds, are prohibited.53 Medical grounds are relevant only as the basis on which medical personnel may be required to give priority to a particular person.54 In times of war, steps must be taken to search for the wounded and other persons exposed to grave danger, to protect them against pillage and ill-treatment, as far as military considerations allow.55 Further, the physical or mental health and integrity of persons who are in the power of the adverse party or who are interned, detained, or otherwise deprived of liberty must not be endangered. This includes a prohibition to subject persons to medical procedures which are not indicated by the person’s state of health or which are not consistent with generally accepted medical standards, that would be applied under 48 Jean Allain, ‘Treaty Interpretation and the United Nations Convention on the Rights of Persons with Disabilities’ (2009) Disability Action’s Centre on Human Rights for People with Disabilities, Queen’s University of Belfast, Legal Reports No 2, 15. 49 For situations of non-international armed conflict. In situations of international armed conflict, Art 41(1) of the Protocol Additional to the Geneva Conventions of 12 August 1949, and relating to the Protection of Victims of International Armed Conflicts (Protocol I) 1977 provides the same. 50 Hart et al (n 40) 173. 51 For the prohibition against torture, see also Geneva Convention (I) for the Amelioration of the Condition of the Wounded and Sick in Armed Forces in the Field 1949 Art 12; Geneva Convention (II) for the Amelioration of the Condition of Wounded, Sick and Shipwrecked Members of Armed Forces at Sea 1949 Art 12; Geneva Convention (III) relative to the Treatment of Prisoners of War 1949 Art 17; Geneva Convention (IV) relative to the Protection of Civilian Persons in Time of War 1949 Art 32; Protocol Additional to the Geneva Conventions of 12 August 1949, and relating to the Protection of Victims of International Armed Conflicts (Protocol I) (n 49) Art 75(2); Protocol Additional to the Geneva Conventions of 12 August 1949, and relating to the Protection of Victims of Non-International Armed Conflicts (Protocol II) (n 46) Art 4(2). 52 Common Art 3 (2) of the 1949 Geneva Conventions; see also Geneva Convention (I) for the Amelioration of the Condition of the Wounded and Sick in Armed Forces in the Field, Art 15; Geneva Convention (II) for the Amelioration of the Condition of Wounded, Sick and Shipwrecked Members of Armed Forces at Sea, Arts 12, 18; Geneva Convention (IV) relative to the Protection of Civilian Persons in Time of War, Art 16. 53 Protocol Additional to the Geneva Conventions of 12 August 1949, and relating to the Protection of Victims of International Armed Conflicts (Protocol I) (n 49) Art 10; Protocol Additional to the Geneva Conventions of 12 August 1949, and relating to the Protection of Victims of Non-International Armed Conflicts (Protocol II) (n 46) Art 7. 54 Protocol Additional to the Geneva Conventions of 12 August 1949, and relating to the Protection of Victims of International Armed Conflicts (Protocol I) (n 49) Art 15 (3); Protocol Additional to the Geneva Conventions of 12 August 1949, and relating to the Protection of Victims of Non-International Armed Conflicts (Protocol II) (n 46) Art 9 (2). 55 Geneva Convention (IV) relative to the Protection of Civilian Persons in Time of War (n 51) Art 16.
motz
322
Situations of Risk and Humanitarian Emergencies
similar medical circumstances to persons who are nationals of the party conducting the procedure and who are in no way deprived of liberty.56 More specifically, medical or scientific experiments, physical mutilations, and the involuntary or coerced removal of organs and tissue are prohibited.57 In addition, a grave breach of IHL is committed, where these guarantees are breached willfully and in a way that seriously endangers the physical or mental health or integrity of the person.58 While the four Geneva Conventions do not further define ‘the wounded and sick’, the First Additional Protocol defines them as military or civilian persons who, ‘because of trauma, disease or other physical or mental disorder or disability, are in need of medical assistance or care and who refrain from any act of hostility’, including ‘persons who may be in need of immediate medical assistance or care’.59 In addition to the wounded and sick, the Geneva Conventions extend protection to ‘the disabled and infirm’. ‘Infirm’ civilians ‘shall be the object of particular protection and respect’ in times of war.60 Also in times of war, no armed attacks may take place on both hospitals and convoys of vehicles or vessels transporting the wounded and sick.61 Again, in times of war, persons with disabilities are to be prioritized in evacuations from besieged areas.62 Further, in prisoner of war camps special facilities must be established ‘for the care to be given to the disabled, in particular the blind, and for their rehabilitation’.63 The prohibition of discrimination extends throughout the four 1949 Geneva Conventions. For instance, it also applies to the distribution of supplies for basic needs, such as clothing, bedding, means of shelter, and other supplies essential to the survival, to civilian populations in occupied territories without any adverse distinction between individuals.64 In addition, in international and non-international armed conflicts humanitarian and impartial relief actions must be undertaken without any adverse distinction.65 Finally, IHL prohibits the use of weapons, which cause ‘superfluous injury or unnecessary suffering’.66 This includes weapons, which cause serious permanent injury.67 This prohibition constitutes an important factor aimed at the reduction of permanent disability as a result of armed conflicts. In the context of persons with disabilities, IHL has been criticized as being heavily based on the medical model of disability and neglecting the needs of persons with disabilities who may not require full medical attention, but may for instance still be prevented from participating fully in society, from access to justice, from education or from information.68 In addition, the CRPD goes beyond IHL by imposing not only duties on states, 56 Protocol Additional to the Geneva Conventions of 12 August 1949, and relating to the Protection of Victims of International Armed Conflicts (Protocol I) (n 49) Art 11 (1); the person has a right to refuse any surgical operations, and such refusal should be documented in writing: Art 11 (5); in general, medical records should be kept of all procedures including blood transfusions: Art 11 (6). 57 58 59 ibid Art 11 (2) and (3). ibid Art 11 (4). ibid Art 8(a). 60 Geneva Convention (IV) relative to the Protection of Civilian Persons in Time of War (n 51) Art 16. 61 62 ibid Arts 18, 21. ibid Art 17. 63 Geneva Convention (III) relative to the Treatment of Prisoners of War (n 51) Art 30. 64 Protocol Additional to the Geneva Conventions of 12 August 1949, and relating to the Protection of Victims of International Armed Conflicts (Protocol I) (n 49) Art 69. 65 ibid Art 70 (1); Protocol Additional to the Geneva Conventions of 12 August 1949, and relating to the Protection of Victims of Non-International Armed Conflicts (Protocol II) (n 46) Art 18 (2). 66 Protocol Additional to the Geneva Conventions of 12 August 1949, and relating to the Protection of Victims of International Armed Conflicts (Protocol I) (n 49) Art 35. 67 Hart et al (n 40) 167–69 also referring to various further treaties prohibiting the use of specific weapons. 68 ibid 154–55, 162–63; for the question whether Art 11 CRPD also applies to state conduct abroad, see ibid 158–60.
motz
Article 11
323
but also enforceable rights.69 An interpretation of article 11 CRPD which takes account of IHL rules can ‘elaborate on the fundamental guarantees under IHL in a manner which is tuned to the protection needs of persons with disabilities’.70
4.2 ‘international human rights law’ The second international law regime expressly referred to in article 11 CRPD concerns international human rights law. This includes obligations under other international human rights treaties (and customary law), which are relevant to risk situations. For instance, the International Covenant on Civil and Political Rights (‘ICCPR’) protects the right to life (article 6) and the right to liberty (articles 9 and 10), prohibits torture and inhuman, degrading and cruel treatment (article 7) and provides for non-discrimination (articles 2 and 26), which includes disability as a prohibited ground in ‘other status’.71 These rights are relevant to the situation of persons with disabilities in emergency situations. The right to life includes, for instance, the right to access life-saving humanitarian assistance.72 Further, the right to liberty prohibits the detention of persons with disabilities in conditions contrary to humanity and the inherent dignity of the person (article 10(1) ICCPR).73 Human rights are also enshrined in regional human rights treaties, such as the European Convention on Human Rights, the Inter-American Convention on Human Rights and the African Charter on Human and People’s Rights. The European Court of Human Rights has, for example, held that the right to life imposes a positive obligation on states to take appropriate steps to safeguard the lives of those within their jurisdiction. This obligation extends to situations of disasters, in which states have to take effective protection measures. The extent of such positive obligations in disaster situations depends both on the origin of the threat and the extent to which it can be mitigated by state measures.74 The right to life is breached, if a state fails to take available preventive measures against ‘clearly identifiable’ and impending natural hazards affecting a distinct area used for human habitation, if this results in death.75 However, as opposed to the CRPD, which contains no derogation clause for emergency situations, the ICCPR and the ECHR allow for the derogation of human rights in times of emergency (article 4 ICCPR and article 15 ECHR). This may limit the applicability of human rights outside of the CRPD for persons with disabilities in situations of risk.76 However, the conditions for derogation are strict and there must be a publicly proclaimed public emergency threatening the life of the nation and any derogation must be limited to the extent strictly required by the exigencies of the situation. The UN Human 70 ibid 155–56. ibid 166. Gerard Quinn and Theresia Degener, ‘Human Rights and Disability: The Current Use and Future Potential of U.N. Human Rights Instruments in the Context of Disability’ UN Doc HR/PUB/02/1 (2002) 59, available at: . 72 UN Human Rights Committee (HRCtee), ‘Concluding Observations on Sudan’ UN Doc CCPR/C/ SDN/CO/4 (19 August 2014) para 8. 73 Hamilton v Jamaica UN Doc CCPR/C/66/D/616/1995 (18 July 1999) para 3.1; Price v United Kingdom (2002) 34 EHRR 53 (ECtHR); Keenan v United Kingdom (2001) 33 EHRR 913; Aswat v United Kingdom (2014) 58 EHRR 1; for a case on the right to private and family life under Art 8 ECHR see Nasri v France (1996) 21 EHRR 458; for the Inter-American system see Bueno-Alves v Argentina, Merits, Reparations and Costs Ser C No 164 (IACtHR 11 May 2007); Rosario Congo v Ecuador Case 11427 Rep 6399 (IAComHR 13 April 1999). 74 75 Budayeva et al v Russia (2014) 59 EHRR 2 para 137. ibid paras 131–37. 76 Crock (n 1) 392–93. 69 71
motz
324
Situations of Risk and Humanitarian Emergencies
Rights Committee has explained that even during an armed conflict derogation is only allowed, if and to the extent that the situation causes a threat to the life of the nation.77 Yet, in practice situations of conflict or disaster are often such that derogation is justified.78 For instance, Guatemala invoked this derogation after Hurricane Mitch.79 Certain human rights are non-derogable and these are therefore of particular importance in situations of conflict and emergency.80 The International Covenant on Economic, Social and Cultural Rights (‘ICESCR’) does not contain a provision for derogation in emergencies. It provides for various rights, which are pertinent in risk situations, such as the right to adequate food, clothing, and housing (article 11), to the highest attainable standard of health (article 12) and to water (articles 11 and 12). Taken together these rights may be interpreted as the right to humanitarian assistance.81 This must be equally provided to persons with disabilities, as the prohibition of discrimination under article 2(2) ICESCR prohibits discrimination on the basis of ‘other status’, which includes disability.82 The Committee on Economic, Social and Cultural Rights (CESCR) has explained the application of these rights in situations of humanitarian emergency or natural disaster. As regards the right to food, the Committee has stated that the prevention of access to humanitarian food aid in internal conflicts or other emergency situations constitutes a violation of article 11.83 In relation to the right to health, it has stressed that the right to treatment includes the creation of a system of urgent medical care in cases of epidemics, accidents, and similar health hazards, and the provision of disaster relief and humanitarian assistance in emergency situations. The control of diseases requires states to make available relevant technologies and to use data collection on a disaggregated basis, the implementation or enhancement of immunization programmes and other strategies of infectious disease control.84 As regards the right to water, the Committee has made it clear that during armed conflicts, emergency situations, and natural disasters, this right embraces obligations under IHL. Thus, objects that are indispensable for the survival of 77 HRCtee, ‘General Comment No 29: States of Emergency (article 4)’ UN Doc CCPR/C/21/Rev 1/Add 11 (31 August 2001) para 3. 78 Crock (n 1) 393; Walter Kälin, ‘The Human Rights Dimension of Natural or Human-Made Disasters’ (2013) 55 German Yearbook of International Law 119, 129–31. 79 Walter Kälin and Entwistle Chapuisat, ‘Displacement in the Context of Disasters and Adverse Effects of Climate Change’ in Susan C Breau and Katja LH Samuel (eds), Research Handbook on Disasters and International Law (Edward Elgar 2016) 362 referring to notifications under Art 4(3) of the Covenant (derogations), Guatemala (dated 20 November 1998, received 23 November 1998); see further Emanuele Somario, ‘Derogation from Human Rights Treaties in Situations of Natural or Man-Made Disasters’ in Andrea de Guttry, Marco Gestri, and Gabriella Venturini (eds), International Disaster Response Law (TMC Asser 2012). 80 See Art 4(2) ICCPR listing Arts 6 (right to life), 7 (prohibition of torture and inhuman and degrading treatment), 8(1) and (2) (prohibition of slavery and servitude), 11 (no imprisonment for debt), 15 (no punishment without law), 16 (recognition before the law) and 18 ICCPR (freedom of thought, conscience, and religion); and Art 15 (2) ECHR listing Arts 2 (right to life, except deaths resulting from lawful acts of war), 3 (prohibition of torture and inhuman and degrading treatment), 4 (1) (prohibition of slavery and servitude) and 7 ECHR (no punishment without law). 81 Walter Kälin, ‘Report of the Representative of the Secretary-General on the Human Rights of Internally Displaced Persons’ UN Doc A/65/282 (10 August 2010) para 10. 82 CESCR, ‘General Comment No 20: Non-Discrimination in Economic, Social and Cultural Rights (Art 2 para 2 of the International Covenant on Economic, Social and Cultural Rights)’ UN Doc E/C12/GC/20 (2 July 2009) para 28. 83 CESCR, ‘General Comment No 12: The Right to Adequate Food (Art 11)’ UN Doc E/C 12/1999/5 (12 May 1999) para 19. 84 CESCR, ‘General Comment No 14: The Right to the Highest Attainable Standard of Health’ UN Doc E/C 12/2000/4 (11 August 2000) para 16.
motz
Article 11
325
the civilian population, such as drinking water installations and supplies and irrigation works, must be protected.85 The right to water also includes assistance to refugees and internally displaced persons in disaster relief and emergency assistance operations, which includes a special responsibility of economically developed states parties to assist poorer developing states.86 Further, the UN Convention on the Elimination of Discrimination Against Women (‘CEDAW’) also applies in situations of emergency. The CEDAW Committee has set out that women’s human rights are to be protected also in international and non-international armed conflicts, conflict prevention and post-conflict situations, with a particular view to counter-acting the gendered impacts of conflicts and women’s exclusion at all levels.87 Its scope of application also extends to non-state actors, whose actions are attributable to the state or whom the state must regulate in accordance with its duty to protect.88 Conflict- related violence against women includes trafficking and sexual and gender-based violence, and forced marriage, all of which remain prohibited under CEDAW.89 Ineffective disarmament, demobilization, and reintegration processes may lead to further violence in post-conflict periods. In such times, states remain under an obligation to prevent, investigate, and punish all gender-based violence.90 Issues further include the lack of participation of women in conflict prevention efforts, post-conflict and transition periods,91 their lack of access to education, employment, and health92 and the situation of refugee, asylum-seeking, displaced, and rural women.93 A further human rights treaty, which permits of no derogation and is pertinent to situations of risk is the UN Convention on the Rights of the Child (‘CRC’). As already mentioned, article 38 CRC provides for the rights of children in armed conflict and stipulates that children must not be used as child soldiers. In interpreting article 38 CRC, the CRC Committee has applied IHL rules to children in the context of recruitment, demobilization, and reintegration of child soldiers as well as the child’s right to life, sexual violence, family reunification.94 Article 39 CRC provides for the right to rehabilitation. Child victims of armed conflict are entitled to rehabilitation services and ‘recovery and reintegration, culturally-appropriate and gender sensitive mental health care . . . and qualified psychosocial counseling’.95 Special attention should be paid to the social reintegration of children who suffer from disabilities as a result of armed conflicts.96 Former child soldiers should primarily be considered as victims of armed conflict and as entitled to all ‘necessary support services to enable reintegration into normal life, including
85 CESCR, ‘General Comment No 15: The Right to Water (Arts 11 and 12 of the Covenant)’ UN Doc E/ C 12/2002/11 (20 January 2003) para 22. 86 ibid para 34. 87 CEDAW Committee, ‘General Recommendation No 30 on Women in Conflict Prevention, Conflict and Post-Conflict Situations’ UN Doc CEDAW/C/GC/30 (18 October 2013) para 2. 88 89 90 ibid paras 14–15. ibid paras 23, 34–37, 39–40, 62–64. ibid para 35. 91 92 93 ibid paras 42–45. ibid paras 48–50. ibid paras 51, 53–56. 94 For a comprehensive discussion of the CRC Committee’s observations, see David Weissbrodt, Joseph C Hansen, and Nathaniel H Nesbitt, ‘The Role of the Committee on the Rights of the Child in Interpreting and Developing International Humanitarian Law’ (2011) 24 Harvard Human Rights Journal 115, 134; see also Hart et al (n 40) 157. 95 CRC Committee, ‘General Comment No 6: Treatment of Unaccompanied and Separated Children Outside Their Country of Origin’ UN Doc CRC/GC/2005/6 (1 September 2005) para 48. 96 CRC Committee, ‘General Comment No 9: The Rights of Children with Disabilities’ UN Doc CRC/C/ GC/9 (27 February 2007) para 78.
motz
326
Situations of Risk and Humanitarian Emergencies
necessary psycho-social counseling’.97 In addition, the Optional Protocol to the CRC on the Involvement of Children in Armed Conflict stipulates an age limit of eighteen years as the minimum age for compulsory recruitment into the armed forces. One of the fundamental rights of the child, which is often at risk in emergency situations, is the right to education.98 The CRC Committee has pointed out that this right is also protected under IHL and international refugee law, but is often denied in risk situations, such as armed conflict or situations of natural disasters.99 The Committee has, therefore, emphasized that primary schooling must be effectively ensured in emergency situations, which requires emergency preparedness in areas with likely natural disasters or armed conflict,100 education in emergency situations which is inclusive of children with disabilities and refugee and migrant children,101 and the inclusion of education in reconstruction and post-emergency plans, including peace and ceasefire agreements.102 A further important right in emergency situations is the right to an identity and nationality (article 7(1) CRC) and the right to know and be cared for by one’s parents (article 9 CRC). Where a child is deprived of the care of its parents, it is entitled to ‘special protection and assistance’ by the state (article 20 CRC).103 Further, the CRC protects the child’s best interests as a primary consideration in all decisions and actions concerning children (article 3), the child’s right to life, survival, and development (article 6), freedom from torture and cruel, inhuman, or degrading treatment or punishment (article 37(a)) and violence, abuse, and neglect (article 19), and the child’s right not to be detained (article 37(b)). Human-made or natural disasters may cause children to become disabled and as such to remain vulnerable to sexual abuse, neglect, and exploitation in post emergency situations. Refugee and internally displaced children with disabilities should therefore be given ‘preventative assistance, access to adequate health and social services, including psychosocial recovery and social reintegration’ as a high priority.104 The right to health under the CRC also includes an obligation on states to take preventive action for instance in post-conflict situations, such as educating children, parents, and the public about the dangers of landmines and unexploded ordinances.105 Finally, as part of the non-refoulement principle states may not return children to situations ‘where there is a real risk of under-age recruitment, including recruitment not only as a combatant but also to provide sexual services for the military or where there is a real risk of direct or indirect participation in hostilities, either as a combatant or through carrying out other military duties’.106 Other human rights conventions may also be pertinent to a construction of article 11 CRPD. For instance, the CRPD Committee has referred to the International Convention on the Protection of the Rights of All Migrant Workers and Members of their Families in the context of the situation of refugees, migrants, and asylum seekers with disabilities, 97 CRC Committee, ‘General Comment No 6: Treatment of Unaccompanied and Separated Children Outside Their Country of Origin’ (n 95) para 56. 98 CRC Committee, ‘General Comment No 1 (2001), Article 29 (1), The Aims of Education’ UN Doc CRC/GC/2001/1 (17 April 2001) para 16. 99 CRC Committee, Day of General Discussion on ‘The Right of the Child to Education in Emergency Situations’ Recommendations (19 September 2008) paras 2–3. 100 101 102 ibid paras 24, 33–34. ibid paras 35–38. ibid paras 39–41. 103 For a more detailed discussion, see Hart et al (n 40) 398. 104 CRC Committee, ‘General Comment No 9: The Rights of Children with Disabilities’ (n 96) para 79. 105 ibid para 55. 106 CRC Committee, ‘General Comment No 6: Treatment of Unaccompanied and Separated Children Outside Their Country of Origin’ (n 95) para 28.
motz
Article 11
327
particularly those with psychosocial disabilities and their right to appropriate support and rehabilitation.107 Indeed, in a Joint Statement with the Committee on Migrant Workers, the CRPD Committee called on states parties to realize the rights of migrants and refugees with disabilities in accordance with their international human rights obligations.108
5. ‘take all necessary measures’ to Ensure the Protection and Safety of Persons with Disabilities So far, no individual complaints have addressed the issue of what measures are necessary for compliance with article 11 CRPD. However, some of the requirements of article 11 CRPD have been addressed in the Reporting Guidelines of the Committee on the Rights of Persons with Disabilities. According to these, states parties have to take measures to include persons with disabilities in national emergency protocols and in order to ensure that humanitarian aid relief is distributed in an accessible way to people with disabilities caught in humanitarian emergencies. This includes, in particular, measures taken to ensure accessible and available sanitation and latrine facilities in emergency shelters and refugee camps for persons with disabilities.109 Accessibility of information regarding routes and means of evacuation, humanitarian relief and aid, and of emergency services is crucial for persons with disabilities, as otherwise ‘their lives cannot be saved or their well-being protected’.110 In particular, the CRPD Committee has stressed in its Concluding Observations that information regarding a comprehensive strategy for protocols to support persons with disabilities in situations of risk and humanitarian emergencies must be accessible in an appropriate format.111 This includes, in particular, information for blind persons available in Braille and sign language and hotline and telephone warning systems that are accessible to deaf persons via platform-independent technologies and alternative modes and formats of communication.112 Innovative development in the humanitarian community is a further area 107 CRPD Committee, Concluding Observations on the Initial Report of Italy (UN Doc CRPD/C/ITA/CO/ 1 (6 October 2016) paras 25–26. 108 Joint Statement by the Committee on the Protection of the Rights of All Migrant Workers and Members of their Families (CMW), and the CRPD Committee (n 28) 3. 109 CRPD Committee, ‘Guidelines on the Treaty-Specific Document to Be Submitted by States Parties under Article 35 of the Convention on the Rights of Persons with Disabilities’ (2009) UN Doc CRPD/C/2/ 3 (18 November) Annex. 110 CRPD Committee, ‘General Comment No 2 (2014): Article 9: Accessibility’ UN Doc CRPD/C/GC/ 2 (22 May 2014) para 36. 111 CRPD Committee, Concluding Observations on the Initial Report of Bosnia and Herzegovina UN Doc CRPD/C/BIH/CO/1 (12 April 2017) para 20. 112 CRPD Committee, Concluding Observations in Relation to the Initial Report of Jordan (12 April 2017) paras 23–24; CRPD Committee, Concluding Observations on the Initial Report of Bosnia and Herzegovina (n 111) paras 25–26; CRPD Committee, Concluding Observations on the Initial Report of Cyprus UN Doc CRPD/C/CYP/CO/1 (12 April 2017) paras 31–32; CRPD Committee, Observaciones Finales Sobre El Informe Inicial de Honduras (12 April 2017) para 26; CRPD Committee, Concluding Observations on the Initial Report of the Plurinational State of Bolivia (4 November 2016) paras 25–26; CRPD Committee, Observaciones Finales Sobre El Informe Inicial Del Uruguay (31 August 2016) para 23; CRPD Committee, Concluding Observations on the Initial Report of Serbia (23 May 2016) paras 19–20; CRPD Committee, Concluding Observations on the Initial Report of Uganda (12 May 2016) para 21(a) and (b); CRPD Committee, Concluding Observations on the Initial Report of Gabon (2 October 2015) para 22; CRPD Committee, Concluding Observations on the Initial Report of the European Union (2 October 2015) paras 30, 34; CRPD Committee, Concluding Observations on the Initial Report of Kenya (CRPD/C/KEN/CO/1 2015) paras 21, 22(b); CRPD Committee, Concluding Observations
motz
328
Situations of Risk and Humanitarian Emergencies
that is key to accessibility for persons with disabilities. Ensuring access of persons with disabilities to warning and alert messages and information about relief availability across all channels, including mobile phones and social media, is important in order to improve the reach of such messages and the speed and efficacy of search and rescue operations.113 This also includes sign language interpreters, audio description and closed captioning on television.114 The Charter on Inclusion of Persons with Disabilities in Humanitarian Action also stresses the need to eliminate ‘physical, communication, and attitudinal barriers including through systematic provision of information for all in planning, preparedness, and response, and strive to ensure the accessibility of services including through universal design in programming, policies, and in all post-emergency reconstruction’.115 In addition, the CRPD Committee has continued to stress the need for humanitarian aid as well as procedures for the rehabilitation of victims of conflict or emergencies to be accessible to persons with disabilities, including those living in rural or remote areas.116 According to the UN International Law Commission, access to humanitarian aid must never be denied arbitrarily.117 The obligations imposed by article 11 CRPD apply both at a general legislative and policy level in relation to humanitarian structures, as well as at a more concrete level of implementation.118 At the general level, article 11 CRPD, read in light of the obligations under the CRPD as a whole, requires the active participation of persons with disabilities and their representative organizations in the formulation of policy and decision-making. For instance, the CRPD Committee has stressed that article 4(3) CRPD requires that persons with disabilities can participate in the World Humanitarian Summit and all processes leading up to it.119 Indeed, the Special Rapporteur on the rights of persons with disabilities has taken the lead in international processes in order to ensure the connection between human rights and development issues. This has had a direct impact on the
on the Initial Report of the Cook Islands (15 May 2015) para 21; CRPD Committee, Concluding Observations on the Initial Report of Germany (13 May 2015) para 23; CRPD Committee, Concluding Observations on the Initial Report of Mongolia (13 May 2015) para 19; CRPD Committee, Concluding Observations on the Initial Report of Chile (13 April 2016) paras 21–22; CRPD Committee, Concluding Observations on the Initial Report of Lithuania (11 May 2016) paras 23–24. 113 Statement of the Committee on the Rights of Persons with Disabilities on disability inclusion for the World Humanitarian Summit (n 1). 114 ibid. 115 Charter on Inclusion of Persons with Disabilities in Humanitarian Action (n 29) para 2.4c, see also para 2.1. 116 CRPD Committee, Concluding Observations on the Initial Report of Colombia (30 September 2016) paras 28(b) and (d), 29(b); CRPD Committee, Concluding Observations on the Initial Report of Guatemala UN Doc CRPD/C/GTM/CO/1 (30 September 2016) para 30; CRPD Committee, Concluding Observations on the Initial Report of Ukraine (2 October 2015) para 22; CRPD Committee, Concluding Observations on the Initial Report of Chile (n 112) paras 21–22; CRPD Committee, Concluding Observations on the Initial Report of Qatar (2 October 2015) para 22; CRPD Committee, Concluding Observations on the Initial Report of Gabon (n 112) para 27; CRPD Committee, Concluding Observations on the Initial Report of the European Union (n 112) para 33(b); CRPD Committee, Concluding Observations on the Initial Report of Chile (n 112) para 21. 117 International Law Commission, Report on the Work of the Sixty-Sixth Session UN Doc A/69/10 (2014) 126 para 7; see further Kälin and Chapuisat (n 79) 369. 118 Statement of the Committee on the Rights of Persons with Disabilities on disability inclusion for the World Humanitarian Summit (n 1). 119 ibid 2; see also eg CRPD Committee, Concluding Observations on the Initial Report of Uganda (n 112) para 21(d).
motz
Article 11
329
formulation of recent policy documents, such as the World Humanitarian Summit and the SDG indicators discussions.120 For instance, in advance of the World Humanitarian Summit in May 2016, various stakeholders among states, UN agencies, international civil society community and global, regional, and national organizations of persons with disabilities gathered to develop the Charter on Inclusion of Persons with Disabilities in Humanitarian Action.121 The Charter has so far been endorsed by eighteen states and the European Union, as well as various UN agencies, organizations involved in humanitarian contexts, and organizations of persons with disabilities. It postulates a commitment to render humanitarian action that is inclusive of persons with disabilities. The 2016 Charter on Inclusion of Persons with Disabilities in Humanitarian Action calls for the promotion of ‘meaningful involvement of persons with disabilities and their representative organizations in the needs-assessment, design, implementation, coordination, monitoring and evaluation of humanitarian preparedness and response programs and draw from their leadership, skills, experience, and other capabilities to ensure their active participation in decision-making and planning processes, including in appropriate coordination mechanisms’.122 The CRPD Committee has also relied on states parties’ obligations under the Charter.123 The revised edition of the Sphere Handbook includes various references to persons with disabilities and stresses the importance of addressing their specific needs in humanitarian action.124 However, it has been criticized as displaying an unresolved tension between paternalism and protection. A further necessary measure under article 11 CRPD concerns data collection. In order to be able to assess the effectiveness of measures for persons with disabilities in risk situations, it is key that data disaggregated by disability, sex, and age is collected.125 This includes data on displacement, casualties, and injuries among persons with disabilities during an armed conflict.126 Policies and processes have to be instituted so that quantitative and qualitative data on persons with disabilities is collected.127 This is also part of the Sustainable Development Goals (SDGs), which state that capacity-building support should be enhanced for developing countries, including by significantly increasing the availability of ‘high-quality, timely and reliable data disaggregated by income, gender, age, race, ethnicity, migratory status, disability, geographic location and other characteristics relevant in national contexts’.128 The follow-up and review processes for the Sustainable 120 Statement by Mr Andrew Gilmour, Assistant Secretary-General for Human Rights, at the High-level Panel Meeting to commemorate the 10th anniversary of the adoption of the Convention on the Rights of Persons with Disabilities: Promoting universal ratification (New York, 2 December 2016). 121 Charter on Inclusion of Persons with Disabilities in Humanitarian Action (n 29). 122 ibid para 2.2a, see also para 2.3c. 123 CRPD Committee, Concluding Observations on the Initial Report of Italy (n 107) para 26; CRPD Committee, Concluding Observations on the Initial Report of Guatemala (n 116) para 30. 124 The Sphere Project (n 6); see also e International Federation of Red Cross and Red Crescent and Societies and the ICRC (n 7) which however fails to differentiate between the needs of persons with disabilities and those of other vulnerable groups. 125 Statement of the Committee on the Rights of Persons with Disabilities on disability inclusion for the World Humanitarian Summit (n 1); CRPD Committee, Concluding Observations on the Initial Report of the European Union (n 112) para 33(c); CRPD Committee, Concluding Observations on the Initial Report of Colombia (n 116) para 28(b). 126 CRPD Committee, Concluding Observations on the Initial Report of Ukraine (n 116) para 22. 127 Charter on Inclusion of Persons with Disabilities in Humanitarian Action (n 29) para 2.3c. 128 UN General Assembly, Resolution 70/1 Transforming Our World: The 2030 Agenda for Sustainable Development UN Doc A/RES/70/1 (2015), available at: Goal 17, para 17.18.
motz
330
Situations of Risk and Humanitarian Emergencies
Development Goals should be rigorous and based on evidence, informed by high quality data and country-led evaluations.129 Finally, it is indispensable that formal identification procedures are instituted in order to identify persons with disabilities in situations within the scope of article 11 CRPD. For instance, this includes the identification of migrants and refugees with disabilities.130 The UNHCR’s Executive Committee (Ex Com) has also recommended that ‘swift and systematic identification and registration of refugees and other persons with disabilities’ is carried out in order to identify their protection needs.131 However, reliance must not be placed on self-identification, as those with special needs are ‘often the least likely to come forward and make their needs known’.132
6. ‘situations of armed conflict, humanitarian emergencies’ In the context of situations of armed conflict and humanitarian emergencies, the CRPD Committee regularly reminds states parties to adopt legislation, protocols, and plans on situations of risk and humanitarian emergencies that take the requirements of persons with disabilities into consideration and are accessible to them.133 This means that states must provide reasonable accommodation to persons with disabilities in such risk situations, which may require preferential treatment, such as during evacuations.134 For instance, camps for persons fleeing a conflict must be built in a way that is accessible to persons with mobility impairments. Equally, the formulation of reconstruction programmes following a conflict should take into account the needs of persons with disabilities by consulting them first.135 In the context of humanitarian emergencies, the Committee stresses the need for both special warning systems in the evacuation of persons with disabilities and specific ibid para 74(g). See eg Joint Statement by the Committee on the Protection of the Rights of All Migrant Workers and Members of their Families (CMW), and the CRPD Committee (n 28) 1. 131 UNHCR ExCom, ExCom Conclusion on Refugees with Disabilities and Other Persons with Disabilities Protected and Assisted by UNHCR (No 110 (LXI) 2010); see further Mary Crock and Laura Smith-Khan, ‘Swift and Systematic? Identifying and Recording Disability in Forced Migration’ in Barbara M Altman (ed), International Measurement of Disability: Purpose, Method and Application (Springer 2016). 132 UNHCR, Handbook for Registration: Procedures and Standards for Registration, Population Data Management and Documentation (2003) 7; see further Crock and Smith-Khan (n 131) 314. 133 See for the most recent examples CRPD Committee, Concluding Observations in Relation to the Initial Report of Armenia (12 April 2017) paras 17–18; CRPD Committee, Concluding Observations in Relation to the Initial Report of the Republic of Moldova (12 April 2017) paras 22–23; CRPD Committee, Concluding Observations on the Initial Report of Bosnia and Herzegovina (n 111) paras 25–26; CRPD Committee, Concluding Observations on the Initial Report of Cyprus (n 112) para 31; CRPD Committee, Observaciones Finales Sobre El Informe Inicial de Honduras (n 112) paras 25–26; CRPD Committee, Concluding Observations on the Initial Report of Ethiopia (4 November 2016) paras 23–24; CRPD Committee, Concluding Observations on the Initial Report of Guatemala (n 116) paras 29–30; CRPD Committee, Concluding Observations on the Initial Report of the United Arab Emirates (3 October 2016) paras 21(a)–22(a); CRPD Committee, Concluding Observations on the Initial Report of Serbia (n 112) paras 19–20; CRPD Committee, Concluding Observations on the Initial Report of Portugal (20 May 2016) para 24; CRPD Committee, Concluding Observations on the Initial Report of Uganda (n 112) para 21; CRPD Committee, Concluding Observations on the Initial Report of Thailand (12 May 2016) paras 23–24; CRPD Committee, Concluding Observations on the Initial Report of Qatar (n 116) paras 21–22; CRPD Committee, Concluding Observations on the Initial Report of Gabon (n 112) paras. 26–27; CRPD Committee, Concluding Observations on the Initial Report of the European Union (n 112) paras. 32–33; CRPD Committee, Concluding Observations on the Initial Report of Kenya (n 112) para 22. 134 135 Hart et al (n 40) 164. ibid 155. 129 130
motz
Article 11
331
training.136 For instance, in the context of the conflict in the east of Ukraine, the CRPD Committee was concerned that persons with disabilities had been abandoned and could not be evacuated. There had been no warning systems for deaf and blind people and persons with multiple forms of disabilities could not use bomb shelters.137 In the context of the Syrian conflict, the CRPD Committee stressed the importance of humanitarian agencies being able to operate throughout the country in order to assist persons with disabilities, emphasizing that they and their families are ‘the forgotten victims of the conflict’.138 This also requires that humanitarian staff and authorities are sensitized ‘on the rights, protection and safety of persons with disabilities’ and identify and include persons with disabilities in humanitarian preparedness and response mechanisms.139 All disaster and post-emergency reconstruction and rebuilding must be inclusive and accessible. Temporary shelters, water, and sanitation facilities and other infrastructure often are not accessible to persons with mobility impairments.140 Principles of universal design should be employed in all reconstruction and rebuilding programmes, including public buildings and spaces, water and sanitation points, information and communication infrastructure, technologies, and services.141 The rehabilitation of persons with disabilities that are victims of armed conflict and their reparation and support also fall within the scope of article 11 CRPD.142 In the context of the Colombian peace negotiations, the CRPD Committee highlighted the lack of consideration of a disability perspective in the context of rehabilitation and social integration of victims of anti-personnel mines.143 The post-conflict reintegration of ex- combatants with disabilities is also regularly addressed insufficiently.144 As regards internally displaced persons with disabilities, the Committee has also expressed concern about the lack of access to social protection and humanitarian aid services in the context of Uganda and Ukraine and stressed the need to register such persons in order to provide them with an adequate standard of living.145
136 CRPD Committee, Concluding Observations on the Initial Report of Bosnia and Herzegovina (n 111) para 26; CRPD Committee, Concluding Observations on the Initial Report of the United Arab Emirates (n 133) paras 21(b), 22(b); CRPD Committee, Concluding Observations on the Initial Report of Serbia (n 112) para 20; CRPD Committee, Concluding Observations on the Initial Report of Ukraine (n 116) paras 22–23; CRPD Committee, Concluding Observations on the Initial Report of Slovakia (17 May 2016) para 35; CRPD Committee, Concluding Observations on the Initial Report of Azerbaijan (12 May 2014) para 25. 137 CRPD Committee, Concluding Observations on the Initial Report of Ukraine (n 116) para 22. 138 Office of the United Nations High Commissioner for Human Rights, Persons with Disabilities ‘Forgotten Victims’ of Syria’s Conflict (Press Release, 13 September 2013), available at: . 139 Charter on Inclusion of Persons with Disabilities in Humanitarian Action (n 29). 140 Aleema Shivji, ‘Disability in Displacement’ (2010) 35 Forced Migration Review 5. 141 Statement of the Committee on the Rights of Persons with Disabilities on disability inclusion for the World Humanitarian Summit (n 1); CRPD Committee, ‘For a Better Urban Future—Securing Inclusion of Persons with Disabilities in the New Urban Agenda’ para 12, available at: . 142 CRPD Committee, Concluding Observations on the Initial Report of Colombia (n 116) para 29. 143 ibid para 28. 144 For a detailed discussion of this, see Janet E Lord and Michael Ashley Stein, ‘Peacebuilding and Reintegrating Ex-Combatants with Disabilities’ (2015) 19 The International Journal of Human Rights 277. 145 CRPD Committee, Concluding Observations on the Initial Report of Ukraine (n 116) paras 24–25; CRPD Committee, Concluding Observations on the Initial Report of Uganda (n 112) para 20(a); CRPD Committee, Concluding Observations on the Initial Report of Kenya (n 112) paras 21, 22(c).
motz
332
Situations of Risk and Humanitarian Emergencies
6.1 ‘natural disasters’ The CRPD does not define the term natural disasters. However, the International Law Commission has defined the term disaster as ‘a calamitous event or series of events resulting in widespread loss of life, great human suffering and distress, or large-scale environmental damage, thereby seriously disrupting the functioning of society’.146 Natural disasters are distinguished from armed conflicts and humanitarian emergencies by the fact that they are not human-made. Disasters cause far more displacement each year than conflict and other forms of violence.147 In addition, the impact of climate change is more serious for populations in developing countries, which lack the resources for planned migration.148 Vulnerability to disaster risks is also influenced by social, economic, political, and other factors, including disability.149 Persons with disabilities display disproportionately higher rates of morbidity and mortality in times of emergency and often lack access to emergency support.150 Natural disasters can take different forms. They may originate from sudden-onset natural hazards (eg tropical storms or earthquakes), slow-onset natural hazards (eg drought or recurrent flooding), or environmental degradation (eg coastal erosion or salinification of ground water). Some of these are linked to climate change, such as sea level rise, which may lead to the slow extinction of entire islands.151 In order to be prepared for risks from natural disasters, any action to manage such risks must take into account parallel measures in development, disaster risk reduction, and climate change. The CRPD Committee has stressed the need for legislative and policy measures that provide for comprehensive plans on preparedness and disaster risk management and reduction to be inclusive of, and accessible to, persons with disabilities.152 146 International Law Commission, Draft Articles on the Protection of Persons in the Event of Disasters (15 May 2014) Art 3. 147 Kälin and Chapuisat (n 79) 358. 148 Intergovernmental Panel on Climate Change, Summary for Policymakers: Climate Change 2014: Impacts, Adaptation and Vulnerability. Contribution of Working Group II to the Fifth Assessment Report of the Intergovernmental Panel on Climate Change (Cambridge University Press 2014) 20. 149 Internal Displacement Monitoring Centre, ‘Disaster-Related Displacement Risk: Measuring the Risk and Addressing Its Drivers’ 13, available at: . 150 Statement of the Committee on the Rights of Persons with Disabilities on disability inclusion for the World Humanitarian Summit (n 1). 151 Kälin and Chapuisat (n 79) 361. 152 CRPD Committee, Concluding Observations on the Initial Report of the Islamic Republic of Iran (12 April 2017) para 25(a); CRPD Committee, Concluding Observations on the Initial Report of Canada (12 April 2017) para 25; CRPD Committee, Concluding Observations in Relation to the Initial Report of Jordan (n 112) para 23; CRPD Committee, Concluding Observations on the Initial Report of the Plurinational State of Bolivia (n 112) para 26; CRPD Committee, Concluding Observations on the Initial Report of Colombia (n 116) para 27; CRPD Committee, Concluding Observations on the Initial Report of Guatemala (n 116) para 30; CRPD Committee, Observaciones Finales Sobre El Informe Inicial Del Uruguay (n 112) paras 23–24; CRPD Committee, Concluding Observations on the Initial Report of Portugal (n 133) para 25; CRPD Committee, Concluding Observations on the Initial Report of Uganda (n 112) paras 20(a), 21(d); CRPD Committee, Concluding Observations on the Initial Report of Chile (n 112) paras 21–22; CRPD Committee, Concluding Observations on the Initial Report of Gabon (n 112) paras 26–27; CRPD Committee, Concluding Observations on the Initial Report of the European Union (n 112) paras. 31, 33(a); CRPD Committee, Concluding Observations on the Initial Report of Kenya (n 112) paras 21, 22(a); CRPD Committee, Concluding Observations on the Initial Report of Mauritius (30 September 2015) para 20; CRPD Committee, Concluding Observations on the Initial Report of the Cook Islands (n 112) paras 21–22; CRPD Committee, Concluding Observations on the Initial Report of Germany (n 112) paras 23–24; CRPD Committee, Concluding Observations on the Initial Report of Mongolia (n 112) para 18.
motz
Article 11
333
The African Union Convention for the Protection and Assistance of Internally Displaced Persons in Africa (‘Kampala Convention’), which sets out binding rights for persons that are internally displaced as a result of conflict, violence, disasters, and human rights abuses, also imposes obligations on states to ‘devise early warning systems’ and to implement disaster risk reduction strategies.153 Voluntary migration and planned relocation may also be a coping or mitigation strategy to deal with disaster risk situations.154 Forced evacuation may only be carried out if it is required ‘by the safety and health of those affected’ and should not last longer than required.155 The CRPD Committee regularly reminds states parties to take measures in line with the Sendai Framework for Disaster Risk Reduction 2015–30.156 The Sendai Framework was adopted at the Third UN World Conference on Disaster Risk Reduction on 18 March 2015 by UN member states in Sendai City, Japan.157 It provides for a disability- inclusive approach to disaster risk and disaster risk reduction, referring to persons with disabilities in the context of a people-centred preventive approach to such practices (para 7); the collection of data disaggregated by disability (para 19 (g)); empowerment of persons with disabilities to publicly lead and promote ‘universally accessible response, recovery, rehabilitation and reconstruction approaches’ in order to ‘Build Back Better’ (para 32) and; for persons with disabilities and their organizations to provide specific knowledge and pragmatic guidance in the context of the development and implementation of normative frameworks, etc and particularly designing and implementing plans tailored to specific requirements ‘taking into consideration, inter alia, the principles of universal design’ (para 36 (a) (iii)). As part of its guiding principles, the Sendai Framework sets out that ‘a gender, age, disability and cultural perspective should be integrated in all policies and practices’ (para 19 (d)). The International Law Commission’s Draft Articles on the ‘Protection of Persons in the event of Disasters’ of 2016 do not expressly address the situation of persons with 153 African Union Convention for the Protection and Assistance of Internally Displaced Persons in Africa (‘Kampala Convention’) Art 4. 154 Kälin and Chapuisat (n 79) 366; Nansen Initiative, ‘Agenda for the Protection of Cross-Border Displaced Persons in the Context of Disasters and Climate Change’ December 2015 Part One. 155 African Union Convention for the Protection and Assistance of Internally Displaced Persons in Africa (‘Kampala Convention’) (n 153) Art 4(4)(f ). 156 CRPD Committee, Concluding Observations in Relation to the Initial Report of Armenia (n 133) para 18; CRPD Committee, Concluding Observations on the Initial Report of the Islamic Republic of Iran (n 152) para 25(a); CRPD Committee, Concluding Observations in Relation to the Initial Report of the Republic of Moldova (n 133) para 23; CRPD Committee, Concluding Observations in Relation to the Initial Report of Jordan (n 112) para 24; CRPD Committee, Concluding Observations on the Initial Report of Bosnia and Herzegovina (n 111) para 26; CRPD Committee, Concluding Observations on the Initial Report of the Plurinational State of Bolivia (n 112) para 26; CRPD Committee, Concluding Observations on the Initial Report of Ethiopia (n 133) para 24; CRPD Committee, Concluding Observations on the Initial Report of Colombia (n 116) para 27; CRPD Committee, Concluding Observations on the Initial Report of Guatemala (n 116) 30; CRPD Committee, Concluding Observations on the Initial Report of Serbia (n 112) para 20; CRPD Committee, Concluding Observations on the Initial Report of Uganda (n 112) para 21 (d); CRPD Committee, Concluding Observations on the Initial Report of Thailand (n 133) paras 23–24; CRPD Committee, Concluding Observations on the Initial Report of Chile (n 112) para 22; CRPD Committee, Concluding Observations on the Initial Report of the European Union (n 112) para 33. 157 CRPD Committee, Statement on Disability Inclusion in the Third World Conference on Disaster Risk Reduction and Beyond (December 2014), available at: in which the CRPD Committee called on the States Parties to ensure the participation of persons with disabilities and their representative organizations in all consultations and the preparatory process.
motz
334
Situations of Risk and Humanitarian Emergencies
disabilities, but nevertheless include some relevant principles.158 Article 6, entitled ‘humanitarian principles’ provides that any response shall take into account the ‘principles of humanity, neutrality and impartiality’ and respect the principle of non-discrimination and give particular attention to the ‘needs of the particularly vulnerable’. In addition, attention is given to the ‘inherent dignity of the human person’, which must be respected and protected in the event of disasters (article 4) and to the respect and protection of the human rights of persons affected by natural disasters, in accordance with international law (article 5).
7. Persons at Risk 7.1 Refugees, Asylum Seekers, Migrants and Internally Displaced Persons with Disabilities in Situations of Risk The situation of refugees, migrants, or internally displaced persons is not expressly addressed in article 11 CRPD. However, the risk situations and the fields of international law expressly listed in article 11 CRPD are only illustrative and not exhaustive. Persons with disabilities affected by conflict or disaster often have to flee across borders in order to reach protection and safety. Some are internally displaced as they try to remain closer to their homes.159 Other persons with disabilities are displaced across borders, because they are affected by conflict or disaster and seek protection abroad,160 although these are not necessarily refugees. The applicability of the CRPD to non-nationals is addressed in article 1 CRPD, which provides that all persons with disabilities are protected by the CRPD. The lack of a distinction in article 11 CRPD between nationals and non- nationals further reinforces the applicability of this right to non-nationals such as refugees, migrants, or asylum-seekers.161 Just like all other international human rights treaties the scope of the CRPD is territorial in the broad sense—although it is now well accepted that human rights treaties also generate extra-territorial obligations. If persons with disabilities are affected due to one of the five grounds of the 1951 Refugee Convention, they may qualify as refugees. However, in disaster-related flight situations, persons may fall outside the scope of the 1951 Refugee Convention because they often do not flee for reasons of one of the personal characteristics set out in article 1A(2) of the Refugee Convention.162 Nevertheless, they can rely on the non-refoulement protection, prohibiting return to their countries of origin, where this violates their right to life or the prohibition against torture. But even where a person is in flight other than for reasons of persecution (eg environmental disaster, armed conflict, extreme poverty) he or she may be exceptionally allowed to remain on humanitarian grounds.163 Although there is a growing literature on the notion of an expanded definition of refugee beyond
International Law Commission (n 146). Internal Displacement Monitoring Centre, ‘Global Estimates 2015: People Displaced by Disasters’ 17, available at: ; Kälin and Chapuisat (n 79) 360. 160 161 Nansen Initiative (n 154). Hart et al (n 40) 158. 162 Kälin and Chapuisat (n 79) 373; Frank Biermann and Ingrid Boas, ‘Protecting Climate Refugees: The Case for a Global Protocol’ (2011) Environment 8. 163 Kälin and Chapuisat (n 79) 378–79. 158 159
motz
Article 11
335
the narrow confines of the Refugee Convention, there is no pertinent international or regional case law, on which to base a claim.164 The CRPD Committee recognizes that the situation of asylum-seekers, refugees and migrants with disabilities falls within the scope of article 11 CRPD. For instance, it has stressed the importance of effective access of asylum-seekers and refugees with disabilities to the protection of their rights under the CRPD.165 This includes accessible shelters, water and sanitation, education and health facilities for persons with disabilities in refugee camps.166 The UNHCR’s Executive Committee further recommends that ‘information, procedures, decisions and policies’ are communicated appropriately to ensure that they are accessible and understood by refugees and other persons with disabilities.167 The CRPD Committee has emphasized in its concluding observations the need to provide accessible information to asylum-seekers and refugees with disabilities, such as easy read versions of official documents during asylum seeking processes, in relation to social protection and rehabilitation programmes,168 or in relation to early warning mechanisms in case of risk or humanitarian emergency.169 The necessary support includes housing and other kinds of support, including making reasonable accommodation.170 In particular, reception conditions should ‘provide an adequate standard of living for all migrants and refugees which protects their physical and mental well-being’ and provides due consideration to the situation of vulnerable persons.171 The CRPD Committee has expressed deep concern at refugees, migrants and asylum- seekers living in conditions of poverty or extreme poverty,172 those in precarious situations or those taken into detention.173 Refugees and IDPs with disabilities still regularly face camp conditions which fail to take account of their specific needs, as is the case for instance in IDP camps in Northern Uganda or the infamous refugee camp Dadaab in Kenya.174 Further, formal, legally defined identification procedures must be instituted in order to identify migrants and refugees with disabilities.175 These should be put in place in 164 Jane McAdam, Climate Change, Forced Migration, and International Law (OUP 2012); Matthew Scott, ‘Natural Disasters, Climate Change and Non-Refoulement: What Scope for Resisting Expulsion under Articles 3 and 8 of the European Convention on Human Rights?’ (2014) 26 International Journal of Refugee Law 404; Kälin (n 81) 373. 165 CRPD Committee, Concluding Observations on the Initial Report of Canada (n 152) para 26(a); Office of the United Nations High Commissioner for Human Rights (n 138). 166 CRPD Committee, Concluding Observations on the Initial Report of the Islamic Republic of Iran (n 152) para 25(b); CRPD Committee, Concluding Observations on the Initial Report of Kenya (n 112) para 22(c). 167 UNHCR ExCom (n 131); see also Migrants in Countries in Crisis Initiative (MICIC), ‘Guidelines to Protect Migrants in Countries Experiencing Conflict or Natural Disaster’ 29 regarding information in braille, with audio cues or other disability-sensitive means. 168 CRPD Committee, Concluding Observations on the Initial Report of Canada (n 152) para 26(b). 169 CRPD Committee, Concluding Observations on the Initial Report of Uganda (n 112) para 21(b). 170 Joint Statement by the Committee on the Protection of the Rights of All Migrant Workers and Members of their Families (CMW), and the CRPD Committee (n 28) 2. 171 ibid 3. 172 CRPD Committee, Concluding Observations on the Initial Report of Portugal (n 133) paras 26–27. 173 CRPD Committee, Concluding Observations on the Initial Report of the European Union (n 112) paras 34–35. 174 Michael Ashley Stein and Janet E Lord, ‘Human Rights and Humanitarian Assistance for Refugees and Internally Displaced Persons with Disabilities in Africa’ in Ilse Grobbelaar-du Plessis and Tobias van Reenen (eds), Aspects of Disability Law in Africa (Pretoria University Law Press 2011) 34. 175 Joint Statement by the Committee on the Protection of the Rights of All Migrant Workers and Members of their Families (CMW), and the CRPD Committee (n 28) 2 and 3; see also UNHCR (n 132) which provides that persons with disabilities should be given priority for registration and interviews, at 145.
motz
336
Situations of Risk and Humanitarian Emergencies
reception and detention centres in order to ensure accessibility for persons with disabilities, including women and children with disabilities, and persons with psychosocial and intellectual disabilities.176 As an exacerbating factor, persons with disabilities often do not self-identify their disabilities for fear of thereby adversely affecting their asylum applications.177 The proper training of professionals is therefore considered a key factor for the identification of, and support for, persons with disabilities in the context of migration, who still face exclusion and discrimination due to a lack of accessibility and denial of reasonable accommodation.178 In their Joint Statement, the Committee on Migrant Workers and the CRPD Committee pointed out the relationship between traumatic root causes for the departure of refugees and migrants with disabilities, which suggest that mental health issues such as post-traumatic stress disorder are prevalent. In the case of women, these are often additionally linked to gender-based and sexual violence.179 Support services for migrants and refugees with disabilities on an equal basis with other citizens are therefore crucial.180 In particular, this includes psychosocial and legal counselling, support, and rehabilitation, with such protection services being age, gender, and disability-sensitive.181 This ought not to be limited to emergency care.182 In its concluding observations, the CRPD Committee has also stressed the importance of accessibility of mental health support, including counselling and the need for support and rehabilitation for refugees, migrants, and asylum- seekers with disabilities.183 Both Committees express deep concern about the precarious situation of persons with disabilities in the current migration crisis.184 Building on the New York Declaration,185 the Committees have called for the new global compact on safe, orderly, and regular migration to take account of the situation of persons with disabilities and to include representative organizations of persons with disabilities in policy formulation and decision-making.186 Finally, the Committees have highlighted the lack of data on the specific requirements of migrants and refugees with disabilities. The Committees have stressed that in order to meet the duty to ensure effective protection and safety in situations of risk and to provide services that meet their requirements, such data must be collected.187 The CRPD Committee has also expressed its concern about the lack of information about the situation of refugees with disabilities in its concluding observations on several countries.188 176 Joint Statement by the Committee on the Protection of the Rights of All Migrant Workers and Members of their Families (CMW), and the CRPD Committee (n 28) 3. 177 178 ibid 1–2. ibid 2. 179 Indeed, Women refugees, migrants and asylum seekers with disabilities may also face a lack of access health and justice systems because of their citizenship status, see CRPD Committee, General Comment No 3 (2016) on Women and Girls with Disabilities 2 (5 November 2016) para 50. 180 Joint Statement by the Committee on the Protection of the Rights of All Migrant Workers and Members of their Families (CMW), and the CRPD Committee (n 28) 2. 181 182 ibid 3. ibid. 183 CRPD Committee, Concluding Observations on the Initial Report of Italy (n 107) paras 25–26. 184 Joint Statement by the Committee on the Protection of the Rights of All Migrant Workers and Members of their Families (CMW), and the CRPD Committee (n 28) 2. 185 UN General Assembly, ‘New York Declaration for Refugees and Migrants’ 13 September 2016, available at: . 186 Joint Statement by the Committee on the Protection of the Rights of All Migrant Workers and Members of their Families (CMW), and the CRPD Committee (n 28) 4. 187 ibid 1. 188 CRPD Committee, Concluding Observations on the Initial Report of the Islamic Republic of Iran (n 152) para 24(b); CRPD Committee, Concluding Observations on the Initial Report of Canada (n 152) para 25.
motz
Article 11
337
7.2 Women and Girls with Disabilities in Situations of Risk In addition to the more general issues of women with disabilities addressed in article 6 CRPD, women with disabilities face particular challenges in situations of risk. The CEDAW Committee has addressed this in a General Recommendation discussed above. Article 11 CRPD, read together with article 6 CRPD provides specific guarantees for these, as the Committee on the Rights of Persons with Disabilities has made clear in its General Comment No 3 on women and girls with disabilities.189 In situations of risk, such as armed conflict, belligerent occupation, natural disasters, and humanitarian emergencies, the safety and protection of women and girls with disabilities is often at risk.190 They are more vulnerable to sexual violence, including rape, and abuse and have reduced chances of survival.191 The CRPD Committee General Comment No 3 also addresses situations of risk, conflict, and emergency. It stresses that women are less likely to have access to recovery and rehabilitation services, or access to justice. Such risks and threats must be addressed in humanitarian aid efforts, including through the provision of health care and mental health services in relation to psychological trauma.192 A further issue is lack of sanitation facilities, which increases discrimination against women with disabilities. For instance, refugee camps often lack accessible sanitation facilities to ensure hygienic menstrual management. This can also result in increased exposure to violence.193 Finally, appropriate services for women and girls with disabilities should be made accessible by ‘removing physical, communicative, social, cultural, economic, political and other barriers, including the expansion of quality services in rural and remote areas’.194 This includes accessible information on humanitarian relief, physical access to distribution points and accessible communication with staff, helplines and hotlines.195
7.3 Children with Disabilities in Situations of Risk Children with disabilities are specifically addressed in article 7 CRPD. In situations of armed conflict, humanitarian emergencies, and natural disasters, children with disabilities and their families become even more vulnerable and face a higher risk of injury, abuse, or neglect.196 Further child-specific risks include the loss of an assistive device or a caregiver rendering children extremely vulnerably to violence and abuse,197 invisibility
189 CRPD Committee, General Comment No 3 (2016) on Women and Girls with Disabilities, 2 (n 179) paras 49–50. 190 Stein and Lord (n 2) 404. 191 Statement of the Committee on the Rights of Persons with Disabilities on disability inclusion for the World Humanitarian Summit (n 1); see also CRPD Committee, General Comment No 3 (2016) on Women and Girls with Disabilities 2 (n 179) para 49; see also Charter on Inclusion of Persons with Disabilities in Humanitarian Action (n 29) para 2.1. 192 CRPD Committee, General Comment No 3 (2016) on Women and Girls with Disabilities, 2 (n 179) paras 49–50. 193 ibid 50. 194 Statement of the Committee on the Rights of Persons with Disabilities on disability inclusion for the World Humanitarian Summit (n 1). 195 CRPD Committee, General Comment No 3 (2016) on Women and Girls with Disabilities, 2 (n 179) para 50. 196 Unicef, ‘Humanitarian Action: Children Living with Disabilities in Humanitarian Crises’, available at: . 197 Stein and Lord (n 2) 406 generally on the separation from caregivers during flight.
motz
338
Situations of Risk and Humanitarian Emergencies
in registration, data collection, or needs assessments,198 lack of access to education and access to safe and clean water and sanitation facilities, which constitutes a major contributing factor for school dropouts among children with disabilities.199 Unicef has stressed the importance of a disability-inclusive humanitarian response with holistic and inclusive programmes, including data and needs assessments for children with disabilities, involvement of them in the planning and design of mainstream humanitarian services, specialized services, measures to prevent injuries and abuse, and accessibility of information and services.200 One of the rights that has been specifically addressed by the CRC Committee in the context of risk situations is the right to inclusive education, which is regularly at risk. The CRC Committee has also addressed the situation of children in risk situations in different General Comments discussed above. The CRPD Committee has stressed that states parties need to ‘adopt inclusive disaster risk reduction strategies for comprehensive school safety and security in emergencies that are sensitive to learners with disabilities’.201 The needs of children with disabilities need to be taken into account in the context of temporary learning environments in risk situations, which includes ‘accessible educational materials school facilities, counselling and access to training in the local sign language for deaf learners’.202 Reasonable accommodation must also be provided regarding the evacuation of children from schools in emergency situations and this cannot be a basis for denial of access to inclusive education.203 Refugee camps also often lack child protection mechanisms for children with disabilities.204 In addition, displaced girls with disabilities may face additional barriers, as it may be culturally more difficult for them to access formal or non-formal education in crisis settings.205 Measures must therefore be taken to ensure that they are safe and not exposed to exploitation, violence and abuse, including also in school.206
Unicef (n 196). Unicef, ‘WASH: Water Sanitation and Hygiene’, available at: . 200 Unicef (n 196). 201 CRPD Committee, General Comment No 4 (2016) on the Right to Inclusive Education UN Doc CRPD/ C/GC/4 25 November 2016 para 14. 202 203 ibid. ibid. 204 CRPD Committee, General Comment No 3 (2016) on Women and Girls with Disabilities, 2 (n 179) para 50. 205 ibid. 206 CRPD Committee, General Comment No 4 (2016) on the Right to Inclusive Education (n 201) para 14; see also Joint Statement by the Committee on the Protection of the Rights of All Migrant Workers and Members of their Families (CMW), and the CRPD Committee (n 28) 3. 198 199
motz
Article 12 CRPD Equal Recognition before the Law . States parties reaffirm that persons with 1 disabilities have the right to recognition everywhere as persons before the law. . States parties shall recognize that persons 2 with disabilities enjoy legal capacity on an equal basis with others in all aspects of life. . States parties shall take appropriate meas3 ures to provide access by persons with disabilities to the support they may require in exercising their legal capacity. . States parties shall ensure that all meas4 ures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person,
are free of conflict of interest and undue influence, are proportional and tailored to the person’s circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the person’s rights and interests. . Subject to the provisions of this article, 5 States parties shall take all appropriate and effective measures to ensure the equal right of persons with disabilities to own or inherit property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit, and shall ensure that persons with disabilities are not arbitrarily deprived of their property.
1. Introduction 2. Background and Travaux Préparatoires 3. Paragraph 1 3.1 States Parties Reaffirm that Persons with Disabilities Have the Right to Recognition Everywhere as Persons before the Law 4. Paragraph 2 4.1 Defining Legal Capacity 4.2 Distinguishing Legal Capacity and Mental Capacity 4.3 Enjoyment of Legal Capacity ‘on an equal basis with others’ 4.4 Legal Capacity and Criminal Law 4.5 Evaluating Equalities and Discrimination Arguments about Legal Capacity 5. Paragraph 3 5.1 Support for the Exercise of Legal Capacity 5.2 Supported Decision-Making 6. Paragraph 4 6.1 Respect for the Rights, Will, and Preferences of the Person 6.2 Conflicts of Interest and Undue Influence 6.3 Regular Review by a Competent, Independent, and Impartial Authority or Judicial Body 6.4 The Safeguards Shall Be Proportional to the Degree to which Such Measures Affect the Person’s Rights and Interests
340 342 348 349 349 349 352 354 358 362 363 364 366 368 369 370 371 372
series and nilsson
340
Equal Recognition before the Law 7. Paragraph 5 373 7.1 Background and Travaux Préparatoires 373 7.2 The Equal Right to Own and Inherit Property 374 7.3 The Equal Right to Control One’s Financial Affairs 376 7.4 Equal Access to Bank Loans, Mortgages, and Financial Credit 380
1. Introduction The right to equal recognition before the law is concerned with legal personality—the ability to bear rights and duties under law, and legal capacity—whether and how one can exercise, claim, or defend those rights, and the assumption of legal liability. Article 12 of the UN Convention on the Rights of Persons with Disabilities (CRPD)1 is concerned with how legal systems themselves enable and disable people as legal actors. In the view of the UN Committee on the Rights of Persons with Disabilities (‘CRPD Committee’) and many of those involved in negotiating article 12, it introduces a new paradigm of ‘universal legal capacity’, that cannot be limited on grounds of disability or mental incapacity.2 The CRPD Committee maintains that this requires the abolition of all forms of substitute decision-making. This interpretation of article 12 is contested in the literature, but for many involved in the disability movement, ending guardianship and other forms of substitute decision-making is central to wider advocacy goals of ending institutionalization, forced treatment, and loss of fundamental citizenship rights such as the ability to vote, marry, and own property. The adoption of article 12 has prompted an explosion of literature on the nature of legal personhood, legal capacity and the possibilities (or otherwise) of eradicating substituted decision-making and introducing new frameworks for support for adults with intellectual disabilities, cognitive impairments, psychosocial disabilities, and other mental disabilities.3 From its inception to the present day it has provoked debate and a degree of controversy. Article 12 has prompted considerable interest in alternatives to guardianship and other substituted decision-making frameworks, but to date no state has entirely abolished substitute decision-making. The right to equal recognition before the law has profound implications for a wide range of legal frameworks for states parties to the Convention, including guardianship laws, the insanity defence, civil and criminal trial procedures, electoral law, and mental health laws. It touches upon many other articles in the Convention, including those 1 Convention on the Rights of Persons with Disabilities (adopted 13 December 2006, entered into force 3 May 2008) 2515 UNTS 3 (CRPD). 2 CRPD Committee, ‘General comment No 1 (2014) Article 12: Equal recognition before the law’ UN Doc CRPD/ C/ GC/ 1 (19 May 2014); Amita Dhanda, ‘Legal Capacity in the Disability Rights Convention: Stranglehold of the Past or Lodestar for the Future’ (2006–07) 34 Syracuse Journal of International Law and Commerce 429; Amita Dhanda, ‘Universal Legal Capacity as a Universal Human Right’ in Michael Dudley, Derek Silove, and Fran Gale (eds), Mental Health and Human Rights: Vision, Praxis, and Courage (OUP 2012); Eilionóir Flynn and Anna Arstein-Kerslake, ‘Legislating Personhood: Realising the Right to Support in Exercising Legal Capacity’ (2014) 10 International Journal of Law in Context 81–104. 3 ‘Mental disabilities’ is the term most frequently used in the literature to refer collectively to persons with intellectual disabilities, psychosocial disabilities, and acquired cognitive impairments such as brain injuries or dementia. However, this terminology is not without controversy, see Helen Spandler, Jill Anderson, and Bob Sapey, Madness, Distress and the Politics of Disablement (Policy Press 2015).
series and nilsson
Article 12 CRPD
341
concerning detention (article 14), forced treatment (articles 15, 17, and 25), relationships and reproductive rights (article 23), protection against violence, exploitation, and abuse (Article 16), the right to life (article 10), access to justice (article 13), living independently (article 19), and participation in political and public life (article 29). Throughout the history of article 12, and its associated literature, the theme of ambiguity recurs. Ambiguity was a necessary cost of unity for the advocacy strategy of disability organizations participating in the negotiations of the Convention, it was the price of agreement amongst states parties when finalizing article 12, and it was ambiguity about whether article 12 permitted or prohibited substitute decision-making that enabled states parties who could not envisage abolishing systems of guardianship or deprivation of legal capacity to sign up to the Convention. Yet the possibility that article 12 does prohibit substitute decision-making and guardianship has created a powerful platform for difficult conversations about the nature and effects of restrictions on legal capacity experienced by disabled people worldwide, challenging the status quo and forcing advocates of guardianship and substitute decision-making systems to re-examine assumptions that have been taken for granted. As states parties engage with article 12, they should not regard it as a technical problem to be solved by legal or other experts. It is fundamental to the spirit of the CRPD that disabled people and representative organisations are involved at all stages of its interpretation and implementation.4 At each point, the wider politics of representation must be thoughtfully engaged with. There are signs that the views expressed by prominent advocates of universal legal capacity are not shared by all in wider communities of users and survivors of psychiatry and disabled people.5 This does not mean these dissenting voices support the values or practices of the ‘old paradigm’, however. Plumb writes that ‘the issue for me is not intervention as such; it is the nature of that intervention and its consequences’.6 To disregard this diversity of views amongst those directly affected by substitute decision-making regimes, or to dismiss dissenting voices as instances of ‘false consciousness’, is to replicate at the political level the same patterns of discreditation, stigmatization, and silencing that the CRPD itself aims to combat. Yet, equally there is a danger that without the ‘strategic unity’ adopted by the disability organisations during the negotiations of article 12, there is the possibility of cherry picking voices that those responsible for implementing the CRPD find the most palatable. The CRPD has created the space Art 4(3) CRPD. Nev Jones and Mona Shattell, ‘Beyond Easy Answers: Facing the Entanglements of Violence and Psychosis’ (2014) 35 Issues in Mental Health Nursing 809–11; Anne Plumb, ‘The Global Politics of Disablement: Assuming Impairment and Erasing Complexity’ in Spandler, Anderson, and Sapey (n 3), citing Christina Katsakou and others, ‘Psychiatric Patients’ Views on Why their Involuntary Hospitalisation Was Right or Wrong: A Qualitative Study’ (2012) 47(7) Social Psychiatry and Psychiatric Epidemiology 1169–79. Some disability rights organizations and users and survivors of psychiatry have argued for the use of functional tests in the mental health context: Elyn Saks, Refusing Care: Forced Treatment and the Rights of the Mentally Ill (University of Chicago Press 2002); George Szmukler and Diana Rose, ‘Strengthening Self-Determination of Persons with Mental Illness’ in J Clausen and N Levy (eds), Handbook of Neuroethics (Springer Netherlands 2015); ‘Deprivation of Liberty Safeguards’ (Disability Rights UK 2014), available at: ; Mental Health Alliance, A Mental Health Act Fit for Tomorrow: An Agenda for Reform (2017), available at: ; D Bhugra and others, ‘The WPA Lancet Psychiatry Commission on the Future of Psychiatry’ (2017) 4 Lancet Psychiatry 10, 775 (see comments of Diana Rose at 794). 6 Plumb, in Spandler, Anderson, and Sapey (n 3). 4 5
series and nilsson
342
Equal Recognition before the Law
for these important conversations, it is up to all of those involved in advocacy, commentary, and implementation to act in good faith and with fair representation for all voices of those directly affected by article 12.
2. Background and Travaux Préparatoires Although earlier human rights instruments guaranteed equal recognition before the law and the right to recognition as a person before the law, the use of guardianship continued to be widespread for disabled people.7 Several non-binding instruments permitted restrictions on legal capacity on disability related grounds and regulated the appointment of third parties (known variously as guardians, curators, deputies, etc) to make substitute decisions for the person. The approach found in these instruments is sometimes called the ‘old paradigm’.8 They typically emphasise the importance of a ‘presumption of capacity’, the proportionality of restrictions, and procedural safeguards such as expert evidence, periodic reviews, and rights of appeal. This approach can be found in the United Nations Declaration on the Rights of Mentally Retarded Persons (1971),9 affirmed by the subsequent UN Declaration on the Rights of Disabled Persons (1975).10 These construct guardianship as a right for ‘the mentally retarded person’ to protect his well-being and interests. In 1991 the UN General Assembly adopted a resolution on ‘The protection of persons with mental illness and the improvement of mental health care’,11 commonly called the ‘MI Principles’. This states that deprivation of legal capacity should only occur after a ‘fair hearing by an independent and impartial tribunal’ and sets out the relevant due process guarantees. Similar approaches can be found in regional human rights instruments and courts.12 Critics of the old paradigm describe this as ‘an ever more perfect and safeguarded process of loss’13 and claim that all persons, no matter what their impairment, can be supported to exercise legal capacity on an equal basis with others. This ‘revolutionary’14 view
7 I recognize that this terminological choice—‘disabled people’—is not without controversy, particularly for those identifying as users and survivors of psychiatry, or preferring person first language (Spandler, Anderson, and Bob (n 3). The terminology I have adopted here reflects the theory and terminology of the disabled people’s movement in the UK, where this author is based. I have adopted this in preference to ‘users and survivors of psychiatry’ because the implications of Art 12 are wider reaching than this group, because this article concerns a disability treaty, and because there is no agreed upon terminology that reflects the preferences of all demographics affected by Art 12. I hope readers will understand that this chapter does not seek to impose an identity upon them which they do not claim as theirs. 8 Kristin Booth Glen, ‘Changing Paradigms: Mental Capacity, Legal Capacity, Guardianship and Beyond’ (2012) 44 Columbia Human Rights Law Review 93. 9 UNGA Res 2856 (XXVI) (20 December 1971). 10 11 UNGA Res 3447 (XXX) (9 December 1975). UNGA Res 46/119 (17 December 1991). 12 Council of Europe Committee of Ministers, ‘Recommendation (99) 4 on principles concerning the legal protection of incapable adults’ (23 February 1999). Recommendation 99 has strongly influenced the approach of the European Court of Human Rights in its case law on legal capacity and guardianship. 13 Gerard Quinn ‘Liberation, Cloaking Devices and the Law: A Personal Reflection on the Law and Theology of Article 12 of the UN CRPD’, Rights & Enforcement—The Next Steps, BCNL Conference, Sofia, 16 October 2013)’, available at: . 14 Tina Minkowitz, ‘The United Nations Convention on the Rights of Persons with Disabilities and the Right to Be Free from Nonconsensual Psychiatric Interventions’ (2006–07) 34 Syracuse Journal of International Law and Commerce 405.
series and nilsson
Article 12 CRPD
343
was the subject of often heated discussions during the negotiations of article 12, which are recorded in the travaux préparatoires15 and in the accounts of participants.16 The CRPD was negotiated over eight sessions of an Ad Hoc Committee between 2002 and 2006. There was a very high level of participation of disability organizations in the negotiations, attending and observing formal and informal discussions of the AHC, submitting proposals and making comments at the end of each session (and sometimes even during sessions). At the first meeting of the Ad Hoc Committee a large group of disabled people’s organizations (DPOs) and allied NGOs joined together to form the International Disability Caucus (IDC) to provide a ‘representative voice’ for disabled people during the Ad Hoc Committee negotiations.17 The World Network of Users and Survivors of Psychiatry (WNUSP) and Inclusion International, an organization of people with intellectual disabilities and their families, were particularly prominent in the negotiations of article 12 CRPD. The involvement of DPOs in the negotiations of the CRPD is central to its ‘nothing about us without us’ ethos. This ethos is now encoded in article 4(3) CRPD, requiring states parties to ‘closely consult with and actively involve persons with disabilities . . . through their representative organisations’ when developing policy or legislation that affects them. This role raises difficult questions about the politics of representation within the disability and user and survivor of psychiatry movements.18 Lord has questioned how representative those NGOs negotiating the Convention were for more ‘moderate’ user groups and for the Global South.19 Some survivor activists have expressed the view that not all views within this community were represented within the advocacy strategy adopted during the negotiations.20 Jones and Kelly raise concerns more generally about ‘representational over-reach’ within user and survivor movements, highlighting the heterogeneity of this group.21 One key group directly affected by article 12—perhaps the main group in industrialized countries—is people with dementia, yet their presence in article 12 CRPD negotiations appears to have been limited.22 Lest these concerns should 15 ‘Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (UN Enable), available at: . 16 Dhanda (n 2); Minkowitz (n 14); Arlene Kanter, The Development of Disability Rights Under International Law: From Charity to Human Rights (Routledge 2015); Marianne Schulze, ‘Understanding The UN Convention On The Rights Of Persons With Disabilities’ (Handicap International 2010), available at: (accessed 15 February 2017); Rosemary Kayess and Philip French ‘Out of Darkness into Light? Introducing the Convention on the Rights of Persons with Disabilities’ (2008) 8 Human Rights Law Review 1–34; Equal Rights Trust, ‘Promoting a Paradigm Shift—ERT Talks with Gábor Gombos and Gerard Quinn about the UN Convention on the Rights of Persons with Disabilities and its Optional Protocol’ (2008) 2 The Equal Rights Review 83–96; Maria Reina, ‘How the International Disability Caucus worked during negotiations for a UN Human Rights Convention on Disability’ (Global Action on Aging 2008), available at: . 17 Reina, ibid. 18 On which see Shaping Our Lives, Beyond the Usual Suspects (2013), available at: . 19 Janet Lord, ‘Mirror, Mirror on the Wall: Voice Accountability and NGOs in Human Rights Standard Setting’ [2004] Seton Hall Journal of Diplomacy and International Relations 93. 20 Plumb, in Spandler, Anderson, and Sapey (n 3). 21 Nev Jones and Timothy Kelly, ‘Inconvenient Complications: On the Heterogeneities of Madness and their Relationship to Disability’, in Spandler, Anderson, and Sapey (n 3). 22 However, these issues are being revisited as part of the negotiations of a possible UN Convention on the Rights of Older Persons, see Eilionóir Flynn, ‘Disability and Ageing: Bridging the Divide? Social Constructions
series and nilsson
344
Equal Recognition before the Law
be seen as diminishing the representational legitimacy of the CRPD, however, it should be recalled that it is still regarded as the most inclusive human rights treaty drafting process in the UN’s history, and a template for future treaty negotiations.23 Reina describes ‘Unity’ as an essential strategy for the IDC’s advocacy: within the IDC opposing positions could be discussed, meanings could be negotiated and some points of view were ultimately ‘sacrificed’, but in front of governments all IDC members supported the position reached. Reina writes that this approach required creativity and ‘tolerating Ambiguity . . . an inevitable consequence of being simultaneously different and unified.’24 Ambiguity is a central theme in the history and literature of article 12. On the one hand, it might be regarded as a shortcoming—ambiguity is rarely a desirable quality in law—yet arguably this very ambiguity has allowed the new paradigm to achieve the prominence it has, from the negotiations, through ratification to the present day. At the second Ad Hoc Committee meeting in 2003 a working group was established to develop a draft Convention. It comprised representatives from states parties as well as NGOs, and included prominent scholars and activists such as Tina Minkowitz (representing WNUSP), Gerard Quinn (representing Rehabilitation International), and Theresia Degener (representing Germany), who went on to chair the CRPD Committee. Minkowitz recounts that the ‘paradigm shift crystallised’ during the 2004 working group.25 The working group had at its disposal a number of drafts and proposals for the Convention submitted by various states and NGOs,26 illustrating diverse starting points. Proposals by India and the Chair of the Ad Hoc Committee mentioned the use of guardianship. Proposals by the EU and the World Blind Union emphasised rights to self-determination closely connected to legal capacity. The International Disability Alliance (IDA), whose members included WNUSP and Inclusion International, called for ‘Recognition as a person before the law’. Separate proposals by WNUSP emphasized the importance of not differentiating legal status ‘on account of actual or perceived disability’, asserted that ‘no person shall be deprived of the legal capacity to assert rights in her or his own behalf ’, and called for ‘a right to be provided with advocacy assistance and other reasonable accommodation with the aim of giving effect to the person’s own decisions.’ Inclusion International’s proposal called for the abolition of ‘paternalistic guardianship laws’. The working group text formed the basis of the negotiations for article 12 (at that time, article 9). The draft required all states parties to ‘recognise persons with disabilities as individuals with rights before the law equal to all other persons’, an early version of article 12(1). It contained an equality requirement, that states parties ‘accept that persons with disabilities have full legal capacity on an equal basis as others’, the precursor to article 12(2). It required states parties to ensure access to ‘assistance’ with understanding,
and Human Rights’ in Peter Blanck, Eilionóir Flynn, and Gerard Quinn (eds), A Research Companion to Disability Law (Ashgate 2015). 24 Kanter (n 16). Reina (n 16). Tina Minkowitz, ‘CRPD and transformative equality’ (2017) 13(1) International Journal of Law in Context 77–86. 26 UN Enable, ‘Compilation of proposals for elements of a Convention, as of 15 January 2004 (Combining Compilation of Proposals for a Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC.265/2003/CRP/13 (16–27 June 2003) and the NGO contributions to the elements of a convention UN Doc A/AC265/2003/CRP 13/Add 1) (2004), available at: . 23 25
series and nilsson
Article 12 CRPD
345
communicating, and expressing ‘choices and preferences’ and performing various legal acts, a precursor to article 12(3). It also made provision for safeguards for this ‘assistance’, anticipating article 12(4). However, the draft also stated that ‘relevant decisions are taken only in accordance with a procedure established by law and with the application of relevant legal safeguards’, with a footnote to this paragraph stating that it should ‘apply only in exceptional circumstances, for which legal safeguards must be provided’. The footnote also queried whether this paragraph was sufficiently clear and ‘how best to protect persons with disabilities who cannot exercise their legal capacity’. The final paragraphs addressed matters relating to property, credit and financial affairs, which formed the basis of article 12(5). The records of the Ad Hoc Committee discussions show that early on many participating states expressed confusion or disagreement about the meaning of ‘legal capacity’. Some states distinguished between the ‘capacity to hold and bear rights’ and the ‘capacity to act’, arguing that whilst the former could not be limited the latter could be. In part this disagreement mirrored different understandings of legal capacity in the various legal systems.27 This distinction was strongly opposed by the IDC, as the ‘capacity to act’ was deemed vital for self-determination. An alternative Canadian proposal to the working group text garnered considerable support among participating states. Although it made reference to equality and support principles, it explicitly permitted a ‘competent, independent and impartial authority’ to ‘find a person unable to exercise their legal capacity with support’, and to appoint ‘a personal representative to exercise the legal capacity on the person’s behalf ’.28 Contrasting proposals were put forward by the IDC, which outlined key elements of support for the exercise of legal capacity and did not describe any procedure for restricting legal capacity.29 The IDC proposal emphasized the importance of trust, and of not imposing support against a person’s will. It called for legal standards for support mechanisms, including the obligation to ‘respect the will and preferences of the individual concerned’, which is reflected in the final text of article 12(4). Many participating states supported the Canadian proposal, but it was adamantly opposed by many NGOs. At the fifth Ad Hoc Committee in 2005 the Committee explicitly discussed whether the Convention should only permit supported decision-making and prohibit substitute decision-making.30 Whilst many participating States recognised the importance of supported decision-making, they felt the Convention should permit substituted decision-making in exceptional circumstances. The IDC was adamant that the Convention should abolish substituted decision-making, and that it could not coexist alongside supported decision-making. At the seventh session the Ad Hoc Committee chair sought clarification from the IDC as to whether there were not any ‘extreme cases’ requiring substitute decision-making or guardianship.31 The IDC’s response reveals a 27 Istvan Hoffman and Gyorgi Konczei, ‘Legal Regulations Relating to the Passive and Active Legal Capacity of Persons with Intellectual and Psychosocial Disabilities in Light of the Convention on the Rights of Persons with Disabilities and the Impending Reform of the Hungarian Civil Code’ (2011) 33 The Loyola Los Angeles International and Comparative Law Review 143–72. 28 Proposals submitted at the fourth session of the Ad Hoc Committee, available at: . 29 Proposals submitted at the fourth session of the Ad Hoc Committee, available at: . 30 Available at: . 31 Available at: .
series and nilsson
346
Equal Recognition before the Law
distinction between supported and substituted decisions that is central to understanding the support paradigm: The difference between supported and substitute decision-making is that, in a supported situation, the person with a disability is at the center of the discourse. The premise of supported decision- making is that it ranges from zero to 100 per cent and is a dynamic concept.
Asked by the Chairman whether ‘100 per cent support’ was not in fact substitute decision- making, the IDC representative responded that: ‘[t]he IDC goal is to not legitimize guardianship; a need for 100 per cent support would become 99 per cent, then 98 per cent, and so on.’ The IDC’s concept of supported decision-making was thus far broader than might intuitively be thought; it applied even to circumstances where a person could not express a choice so long as they were ‘at the center of the discourse’. This approach will be revisited under article 12(3) and article 12(4) CRPD below. Towards the final Ad Hoc Committee sessions, a new text bracketed a paragraph allowing for the appointment of a personal representative. Some states sought its inclusion so as to impose safeguards on the use of guardianship, but the IDC insisted that such language be removed as it would simply reinforce ‘the traditional abusive systems’.32 Canada’s proposal to maintain silence on whether the Convention should permit substituted decision-making received support from the IDC and many states. Some, however, insisted the Convention should permit guardianship and many informal discussions ensued in order to try and break the stalemate. Dhanda recounts that a group of states produced a new text that attempted to combine some of the safeguards for guardianship with those that had been proposed for supported decision-making: ‘It was a periscope- like construction of the crucial paragraph so that each person could see what they desired in the paragraph, and thus provide consent to the proposal.’33 This proposed text received the support of the majority of states, ultimately becoming article 12(4). At the final Ad Hoc Committee meeting in 2006, a footnote appeared in the consensus text stating that ‘In Arabic, Chinese and Russian, the term “legal capacity” refers to “legal capacity for rights”, rather than “legal capacity to act”.’34 No negotiations or deliberations had discussed this footnote.35 It caused consternation among the DPOs, who viewed legal capacity to act as critical, and amongst ‘legal and diplomatic forces’ because, Schulze writes: ‘A footnote is an unheard of feature in an international agreement of this kind. Allowing it to remain would have created a string of legal complications, the implications of which were inestimable.’36 After heated negotiations, the footnote was removed. Echoing Reina’s observation that ambiguity was necessary to achieve unity for the IDC, the final text of article 12 CRPD remains silent on the pivotal question of whether the Convention permits or prohibits substitute decision-making. Consequently, the travaux are a focus of interest for those attempting to resolve legal ambiguities surrounding article 12. Dhanda, a prominent advocate of universal legal capacity and participant in the negotiations, recognizes that the text ‘does not prohibit substituted decision-making and there is language which could even be used to justify substitution’, but argues that 33 ibid. Dhanda (2006–07) (n 2) 450. UN Enable, ‘Interim report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its eighth session’ UN Doc A/AC265/2006/4 (1 September 2006). 35 36 Schulze (n 16); Dhanda (2006–07) (n 2). Schulze (n 16) 88. 32 34
series and nilsson
Article 12 CRPD
347
it cannot be read divorced from the process of advocacy and negotiation.37 Martin and others, however, highlight the deliberate silence on substitute decision-making and argue that ‘[n]o state representative addressed this question by saying explicitly that substitute decision-making should be abolished’.38 They conclude on the basis of their analysis of the travaux that there is no warrant for the conclusion that the framers of the CRPD intended to abolish substitute decision-making. This view is not universally shared. Some states did accept the premise of universal legal capacity, without exception,39 although many more argued for substitute decision-making to be retained. Kanter highlights that many challenged the footnote that would have restricted rights to legal capacity to hold a right, but not to exercise it.40 Schulze believes that ‘[in] the end, the shift from substituted decision-making to supported decision-making was achieved’, the result of ‘tedious, detailed and sometimes excruciating discussions’.41 Canada, the Netherlands, Australia, Poland, Egypt, Estonia, Singapore, and Norway all submitted interpretive declarations when ratifying the CRPD stating that they understand article 12 to permit substitute decision-making, deprivation of legal capacity or guardianship.42 In its early concluding observations on the initial reports of states parties to the CRPD, the CRPD Committee called upon states to replace regimes of substitute decision- making by supported decision-making,43 although offered little further detail explaining what this entailed. In 2014 the CRPD Committee adopted General Comment No 1 on article 12 (‘General Comment No 1’)44 to dispel a ‘general misunderstanding’ of state obligations under article 12 and to emphasize that ‘the human rights-based model of disability implies a shift from the substitute decision-making paradigm to one that is based on supported decision-making’.45 The Committee’s interpretation is not unanimously shared,46 and has met with a frosty reception by medical professionals in particular,47 who have expressed confusion and concern about the implications of the General Comment. In the final analysis, much comes down to what ‘substituted decision-making’, ‘supported decision-making’, and ‘exercising legal capacity’ are taken to mean. These Dhanda (200–07) (n 2) 460–61. Wayne Martin and others, ‘The Essex Autonomy Project Three Jurisdictions Report: Towards Compliance with CRPD Article. 12 in Capacity/Incapacity Legislation across the UK’ (Essex Autonomy Project, University of Essex 2016) 58, available at: . 39 At the 4th session of the Ad Hoc Committee Mexico and Lebanon argued against surrogate decision- making (26 August 2004), available at: . 40 41 Kanter (n 16). Schulze (n 16). 42 Signatories and ratifications to the CRPD, and reservations and declarations, can be viewed on the UNTS website, available at: . 43 See eg CRPD Committee, Concluding Observations on Tunisia UN Doc CRPD/C/TUN/CO/1 (13 May 2011); Spain UN Doc CRPD/C/ESP/CO/1 (19 October 2011); Peru UN Doc CRPD/C/PER/CO/1 (9 May 2012); China UN Doc CRPD/C/CHN/CO/1 (27 September 2012); Argentina UN Doc CRPD/C/ ARG/CO/1 (8 October 2012); Australia UN Doc CRPD/C/AUS/CO/1 (21 October 2013). 44 45 See (n 2). General Comment No 1 para 3. 46 Martin and others (n 38); Australian Law Reform Commission, Equality, Capacity and Disability in Commonwealth Laws: Final Report, (ALRC Report 2014 124). 47 Melvyn Freeman and others, ‘Reversing Hard Won Victories in the Name of Human Rights: A Critique of the General Comment on Article 12 of the UN Convention on the Rights of Persons with Disabilities’ (2015) 2 Lancet Psychiatry 844–50; John Dawson ‘A Realistic Approach to Assessing Mental Health Laws’ compliance with the UNCRPD’ (2015) 40 International Journal of Law and Psychiatry 70–79; Paul S Appelbaum, ‘Protecting the Rights of Persons With Disabilities: An International Convention and Its Problems’ (2016) 67 Law & Psychiatry 366–68. 37 38
series and nilsson
348
Equal Recognition before the Law
should be recognized as terms of art within the literature on universal legal capacity; it should not be assumed that they carry their intuitive or traditional meaning.48 Asked about the footnote controversy, the chair of the Ad Hoc Committee stated that ‘any nuances in translation would be worked out throughout time and would depend on State practice’.49 The Australian Law Reform Commission recommended withdrawing Australia’s interpretive declaration on article 12, as ‘driven by conceptual confusion that is impeding reform’.50 Despite ongoing controversies, article 12 has influenced domestic and regional law- making bodies. It has been considered in many rulings of domestic and regional courts,51 domestic reforms to legal capacity legislation,52 and statements and reports by other agencies and rapporteurs within the UN system, including the World Health Organization.53 Regional bodies including the European Union54 and the Organization of American States55 have reviewed the practices of member states against the standards of article 12.
3. Paragraph 1 The title of article 12, ‘equal recognition before the law’, can be found in the text of article 7 of the Universal Declaration of Human Rights (UDHR)56 and article 26 of the International Covenant on Civil and Political Rights (ICCPR).57 Article 26 ICCPR provides a broad guarantee against discrimination. It identified several groups with protected characteristics at heightened risk of discrimination; disabled people were not on this list. The CRPD can be viewed as rectifying the invisibility of disabled people under earlier human rights instruments.58
48 eg when Martin and others (n 38) argue that Art 12 does not prohibit substitute decision-making, this is based on their ‘intuitive’ interpretation of ‘substitute decision-making’ and not necessarily that intended within the General Comment and elsewhere in the literature (at 12 and Appendix C). 49 ‘Press Conference on Convention Concerning Rights of Disabled Persons’ (United Nations 13 December 2006), available at: . 50 Australian Law Reform Commission (n 46) para 2.59. 51 Anna Lawson and Lisa Waddington (eds), Domestic Interpretation of the UN Convention on the Rights of Persons with Disabilities: A Comparative Analysis (OUP 2017). 52 For a review of recent developments, see: Robert Dinerstein, ‘Emerging International Trends for Practices in Guardianship Laws for People with Disabilities’ (2016) 22 ILSA Journal of International and Comparative Law 435–60. 53 UNCAT, ‘Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Juan E Méndez’ UN Doc A/HRC/22/53 (1 February 2013); UNCAT, ‘Interim report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Manfred Nowak’ UN Doc A/63/175 (28 July 2008); World Health Organization, Office of the High Commissioner for Human Rights and other UN Agencies, Eliminating Forced, Coercive and Otherwise Involuntary Sterilization: An Interagency Statement (2014); World Health Organization, WHO Quality Rights Tool Kit: Assessing and Improving Quality and Human Rights in Mental Health and Social Care Facilities (WHO 2012). 54 European Union Agency for Fundamental Rights (FRA), Legal Capacity of Persons with Intellectual Disabilities and Persons with Mental Health Problems (2013). 55 Organization of American States, ‘Final Report of the Third Special Meeting of the Committee for the Elimination of All Forms of Discrimination Against Persons with Disabilities (CEDDIS)’ (10 January 2014) OEA/Ser L/XXIV 3.3. 56 UNGA Res 217 A(III) (10 December 1948). 57 International Covenant on Civil and Political Rights (adopted 6 December 1966, entered into force 23 March 1976) 999 UNTS 171 (ICCPR). 58 Dhanda (2006–07) (n 2); Kanter (n 16).
series and nilsson
Article 12 CRPD
349
3.1 States Parties Reaffirm that Persons with Disabilities Have the Right to Recognition Everywhere as Persons before the Law Article 12 CRPD relates to both legal personality and the legal capacity to act. To have legal personality is to be able to bear rights and duties under law.59 It is intimately connected with philosophies of personhood,60 but it is possible to be a natural person (that is, a human) and not be recognized as a legal person, or for non-human entities to be granted legal personality. For example chattel slaves in the USA were not legal persons within the civil law system.61 Meanwhile today, some animals have been recognized as legal persons in some jurisdictions62 and Bolivian legislation grants legal personality to ‘Mother Earth’.63 It is important to recognize that the mere conferral of legal personality does not specify what rights or duties are held, or how they are exercised; this falls within the remit of legal capacity (discussed under article 12(2)). The first paragraph of article 12 CRPD is based on article 6 UDHR and article 16 ICCPR: ‘Everyone has the right to recognition everywhere as a person before the law.’ These rights were crafted to address the situation of colonized peoples who had systematically been denied legal personality by colonial regimes.64 Article 12(1) CRPD requires states parties to recognize all persons with disabilities as legal persons, capable of bearing rights and duties within both civil and criminal justice systems. Kanter writes that ‘Any law or practice by which a person with disability is not registered at birth, refused a document of identity or disqualified from inheriting property or otherwise recognized under the law, would be a violation of article 12(1).’65
4. Paragraph 2 A person may enjoy legal personality—the status of being a bearer of rights and duties under law—but be unable to exercise legal capacity him or herself because of the operation of guardianship or other laws restricting legal capacity. Legal capacity is an elusive concept, however.
4.1 Defining Legal Capacity Article 12(2) CRPD is only the second UN human rights treaty to use the term ‘legal capacity’. The first was article 15(2) of the UN Convention on the Elimination of 59 Richard Tur, ‘The “Person” in Law’ in Arthur Peacocke and Grant Gillett (eds), Persons and Personality: A Contemporary Inquiry (Blackwells 1987). 60 Ngaire Naffine, ‘Who Are Law’s Persons? From Cheshire Cats to Responsible Subjects’ (2003) 66 The Modern Law Review 346–67. 61 Colin Dayan, The Law Is a White Dog: How Legal Rituals Make and Unmake Persons (Princeton University Press 2011); Steven Wise, Though the Heavens May Fall: The Landmark Trial That Led to the End of Human Slavery (Da Capo Press 2005). 62 Steven Wise, Rattling the Cage: Towards Legal Rights for Animals (Da Capo Press 2014); Presented by AFADA about the Chimpanzee ‘Cecilia’—Non human individual, File no P-72.254/15 before the Third Court of Guarantees in Mendoza, Argentina (3 November 2016), non-official English translation, available at: . 63 La Ley Marco de la Madre Tierra y Desarrollo Integral para Bien (‘Framework Law of Mother Earth and Integral Development for Living Well’, Law 300, passed by Bolivia’s Plurinational Legislative Assembly on 15 October 2012). 64 65 Dhanda (2006–07) (n 2). Kanter (n 16).
series and nilsson
350
Equal Recognition before the Law
Discrimination Against Women (CEDAW).66 CEDAW addresses legal capacity because many women have been denied basic rights to own property, access credit, engage in contracts, vote, give witness testimony etc, either at all or without their husband’s or male relatives’ consent.67 In the eighteenth century William Blackstone referred to this phenomenon as ‘civil death’.68 Legal capacity is intimately connected with autonomy. Quinn describes its significance as ‘a sword to enable one to make one’s own choices’ and ‘a shield fending off others’ purporting to make decisions for us.69 The term ‘legal capacity’ has no internationally agreed upon definition.70 It is often described by way of ‘canonical examples’71 such as entering into a contract, getting married, voting, giving or refusing consent to medical treatment, etc.72 It has a bearing on such diverse matters as instructing legal representatives,73 consent to sexual relationships74 and state interventions to protect adults at risk of abuse or neglect by others.75 Legal capacity may be restricted formally—through an administrative or court declaration of ‘incapacity’—or informally, for example through defences that permit acts that would ordinarily be regarded as unlawful violations of bodily integrity or interferences with property.76 The CRPD Committee has highlighted that even states, such as Sweden, that have abolished formal declarations of incapacity, forms of substitute decision-making may remain.77 There may also be de facto restrictions on legal capacity whereby, despite the absence of any source of law restricting the legal capacity of disabled people, society functions in such a way that systematically denies them ordinary legal rights to self-determination. In some of its concluding observations on article 12, the CRPD Committee has raised concerns about ‘de facto guardianship’ through customary practices such as families preventing disabled relatives from making choices about marriage, buying food, or renting a house, or inheriting.78 66 Convention on the Elimination of All Forms of Discrimination against Women (adopted 18 December 1979, entered into force 3 September 1981) 1249 UNTS 13 (CEDAW). 67 CEDAW, General Recommendation No 21 Equality in marriage and family relations (13th session 1994). 68 William Blackstone, Commentaries on the Laws of England: A Facsimile of the First Edition of 1765–1769 with an Introduction by Stanley N. Katz (Blackwells 1979). 69 Gerard Quinn, ‘Legal Capacity Law Reform: The Revolution of the UN Convention on the Rights of Persons with Disability’ (Frontline: The Voice of Intellectual Disability issue 83, 2 August 2011) . 70 71 European Union Agency for Fundamental Rights (n 54) 9. Martin and others (n 38) 7. 72 Bernadette McSherry, ‘Legal Capacity under the Convention on the Rights of Persons with Disabilities’ (2012) 20 Journal of Law and Medicine 22–27. 73 Lucy Series, ‘Legal Capacity and Participation in Litigation: Recent Developments in the European Court of Human Rights’ (2015) 4 European Yearbook of Disability Law 103–28. 74 Anna Arstein-Kerslake, ‘Understanding Sex: The Right to Legal Capacity to Consent to Sex’ (2015) 30 Disability & Society 1459–73; Lucy Series, ‘The Use of Legal Capacity Legislation to Control the Sexuality of People with Intellectual Disabilities’ in Tom Shakespeare (ed), Disability Research Today: International Perspectives (Routledge 2015) 149–65. 75 Eilionóir Flynn and Anna Arstein-Kerslake, ‘State Intervention in the Lives of People with Disabilities: The Case for a Disability Neutral Framework’ (2017) 13 International Journal of Law in Context 1, 39. 76 Alex Ruck Keene, ‘Powers, Defences and the “Need“ for Judicial Sanction’ (2016) Elder Law Journal 244; Piers Gooding and Eilionóir Flynn, ‘Querying the Call to Introduce Mental Capacity Testing to Mental Health Law: Does the Doctrine of Necessity Provide an Alternative?’ (2015) 4 Laws 245–71. 77 CRPD Committee, ‘Concluding Observations on Sweden’ UN Doc CRPD/C/SWE/CO/1 (12 May 2014) para 33. 78 CRPD Committee, ‘Concluding Observations on Kenya’ UN Doc CRPD/C/KEN/CO/1 (30 September 2015) paras 23 and 24, and Uganda UN Doc CRPD/C/UGA/CO/1 (12 May 2016) paras 22 and 23.
series and nilsson
Article 12 CRPD
351
A legal opinion on article 12 CRPD, signed by thirty-one legal experts from around the world, defines legal capacity as consisting of ‘the capacity to hold a right and the capacity to act and exercise the right, including legal capacity to sue, based on such rights’.79 General Comment No 1 defines legal capacity as including the capacity to be a ‘holder of rights’, entitling ‘the person to full protection of his or her rights by the legal system’, and the capacity to be ‘an actor under law’, recognised ‘as an agent with the power to engage in transactions and in general to create, modify or end legal relationships’.80 Because the concept of legal capacity is so fluid, it is difficult to draw a line around which acts in everyday life constitute possible expressions of legal capacity and thereby what constitutes a restriction on legal capacity. Not all acts and decisions are legal acts. Whether an act constitutes an exercise of legal capacity varies according to custom and jurisdiction. It depends upon both the nature of the act—whether it is legal in character— and the actor, whether they are recognised as having made a legally effective choice or performed a legally effective act, with all the resultant rights and responsibilities this entails. In cultures where fewer acts and decisions are regulated by law, the barriers to one’s decisions being accorded respect and recognition may be informal rather than restrictions on legal capacity per se.81 In contrast, the increasing ‘juridification’82 of everyday life and interpersonal relations in some societies means that legal capacity may be formally engaged even for quite mundane acts and decisions. For example, in England and Wales, capacity laws are regarded as potentially relevant to everyday decisions such as when a person gets up and what they eat;83 there has even been litigation over shaving pubic hair.84 The tendency to engage rights to defend everyday acts, such as smoking,85 or eating unhealthy food86 has been criticized as devaluing wider struggles against ‘tyranny, prejudice and oppression’ and expanding the colonisation of life and the social world by law.87 Yet most people take for granted the freedom and dignity to make choices in their everyday lives, including poor choices. By contrast, disabled people may have to activate the ‘heavy lifting procedures’ of ‘high duty rights’ simply to enjoy ‘ordinary personal preferences like watching late-night television and waking up late in the morning’,88 because of the high level of external regulation in their lives.89 79 Santos Cifuentes and others, ‘Legal Opinion on Article 12 of the CRPD’ (University of Leeds Disability Studies Group Archives 2008), available at: . 80 Para 11. 81 For an example of this, see: Elizabeth Kamundia, ‘How to implement Article 12 of the Convention on the Rights of Persons with Disabilities regarding legal capacity in Kenya: A Briefing Paper’ (The Kenya National Commission on Human Rights and the Open Society Initiative for Eastern Africa, 2013). 82 Jürgen Habermas, The Theory of Communicative Action, Lifeworld and System: A Critique of Functionalist Reason (Beacon Books 1987). 83 Department for Constitutional Affairs, Mental Capacity Act Code of Practice (TSO 2007) 3, paras 1.1, 1.8, 1.8, 3.3, 5.58, 6.1, 4.38, 4.60, 5.27, and 5.60; Law Commission, Mentally Incapacitated Adults and Decision- Making: An Overview (Law Com No 119, 1991) para 1.10. 84 A Local Authority v ED & Ors [2013] EWCOP 3069. 85 R (E) v Nottinghamshire Healthcare NHS Trust [2009] EWCA Civ 795. 86 Lyons v Board of the State Hospital [2011] ScotCS CSOH_21. 87 Costas Douzinas, Human Rights and Empire: The Political Philosophy of Cosmopolitanism (Routledge- Cavendish 2007) 36. 88 Amita Dhanda, ‘Conversations between the Proponents of the New Paradigm of Legal Capacity’, (2017) 13 International Journal of Law in Context 87, 91. 89 Eilionóir Flynn and Anna Arstein-Kerslake, ‘The Right to Legal Agency: Domination, Disability, and the Protections of Article 12 of the Convention on the Rights of Persons with Disabilities’ (2017) 13 International Journal of Law in Context 1, 22.
series and nilsson
352
Equal Recognition before the Law
4.2 Distinguishing Legal Capacity and Mental Capacity Legal capacity is distinct from mental capacity. Mental capacity concerns an individual’s putative psychological abilities, whereas legal capacity refers to whether a person’s acts and decisions are treated as legally effective within a particular legal system. Almost all legal systems couple restrictions on legal capacity to some formulation of mental capacity.90 So called ‘status’ approaches restrict legal capacity on a binary categorical status, such as being a detained patient.91 ‘Outcome’ approaches restrict legal capacity on the basis of the outcome of a person’s decision—for example, whether it is deemed ‘unreasonable’. Increasingly popular ‘functional’ approaches to mental capacity instead purport to restrict legal capacity based on the process by which a person makes a decision, rather than the outcome of the decision. The origins of functional approaches lie in psychometric tools for the clinical assessment of competence to give or refuse consent to treatment, and there is an extensive research literature examining their application to different clinical groups.92 Functional tests are also sometimes referred to as ‘cognitive’ tests or tests of ‘decision-making capacity’. The Mental Capacity Act 2005 of England and Wales (MCA) is a widely known and influential example of a functional approach. The MCA defines an inability to make a decision functionally, as being unable: a) to understand the information relevant to the decision, b) to retain that information, c) to use or weigh that information as part of the process of making the decision, or d) to communicate his decision (whether by talking, using sign language or any other means).93 This functional test, or adapted versions thereof, appear increasingly in legislation around the world.94 There have been longstanding calls for a functional test of capacity to be adopted as a threshold criterion for psychiatric detention and forced treatment95
90 NB: these are not the only restrictions on legal capacity that exist within legal systems. Restrictions on legal capacity often also apply to, inter alia, children, prisoners, legal persons that are not natural persons (such as companies), etc. 91 eg Winterwerp v the Netherlands (App no 6301/73) [1979] 2 EHRR 387. 92 Paul S Appelbaum and Thomas Grisso, ‘Assessing Patients’ Capabilities to Consent to Treatment’ (1988) 319 New England Journal of Medicine 1635–38; Thomas Grisso and Paul S Appelbaum, ‘Comparison of Standards for Assessing Patients’ Capacities to Make Treatment Decisions’ (1995) 152 American Journal of Psychiatry 1033–37; Thomas Grisso and Paul S Appelbaum, ‘The MacArthur Study III: Treatment Competence Abilities of Patients to Consent to Psychiatric and Medical Treatments’ (1995) 19 Law and Human Behaviour 149. 93 Mental Capacity Act 2005 s3(2). 94 Internationally, the MCA has influenced law reform proposals in: the Republic of Ireland (Assisted Decision-Making (Capacity) Bill 2013); Australia (Victorian Law Reform Commission, 2012; Mental Health Act 2013, Tasmania; Mental Health Act 2014, Western Australia; Australian Law Reform Commission, 2014); Singapore (Mental Capacity Act 2008); and Central and Eastern Europe (Model Act on reasons and procedure for limiting and protection of certain rights and liberties, Serbia, 2013; Natural Persons and Support Measures (Draft) Act, Bulgaria, 2014; Act on Protection of Persons with Mental Disorders 2014, Croatia, 2014). 95 Tom Campbell and Chris Heginbotham, Mental Illness: Prejudice, Discrimination and the Law, (Dartmouth Publishing Company 1991); John Dawson and George Szmukler, ‘Fusion of Mental Health and Incapacity Legislation’ (2006) 188 The British Journal of Psychiatry 504–09; George Szmukler, Rowena Daw, and Felicity Callard, ‘Mental Health Law and the UN Convention on the Rights of Persons with Disabilities’ (2013) 17 International Journal of Law and Psychiatry 245–52; Genevra Richardson, ‘Report of the Expert Committee: Review of the Mental Health Act 1983’ (Department of Health 1999).
series and nilsson
Article 12 CRPD
353
and for the ‘fusion’ of guardianship and civil commitment laws based on this principle. Northern Ireland has recently adopted the world’s first example of ‘fused’ guardianship and mental health legislation based on the functional approach.96 Several scholars and law reform bodies maintain that functional tests of mental capacity comply with article 12 CRPD.97 Functional approaches to legal capacity are increasingly popular because they are thought to respect autonomy and not to discriminate against disabled people. The autonomy claim is based on the view that functional tests are ‘value-neutral’—that they assess the internal processes of decision-making for their ‘autonomous’ character, rather than assessing the outcome of the decision against the assessor’s own values. There is a vigorous philosophical literature interrogating this claim98 and a developing literature on coupling functional capacity assessments to the person’s own values.99 Functional tests have also been criticized for neglecting the relational dimensions of mental capacity assessment.100 Because functional approaches are ‘decision specific’, it is easier to tailor restrictions on legal capacity to specific areas of concern than traditional criteria for guardianship. General Comment No 1 attacks each of these foundational beliefs about functional tests of mental capacity. It is scathing about the presumption that third parties can ‘accurately assess the inner-workings of the human mind’.101 It asserts that ‘mental capacity is not, as is commonly presented, an objective, scientific and naturally occurring phenomenon’102 but is ‘is contingent on social and political contexts’.103 It maintains that because under functional tests ‘a person’s disability and/or decision-making skills are taken as legitimate grounds for denying his or her legal capacity’, they thereby constitute a ‘discriminatory denial of legal capacity’ and are incompatible with article 12(2) CRPD.104 The claim is not that mental incapacity does not exist—the General Comment acknowledges
Mental Capacity Act (Northern Ireland) 2016 SI 2016\18. Martin and others (n 38); Wayne Martin and others, ‘Achieving CRPD Compliance: Is the Mental Capacity Act of England and Wales Compatible with the UN Convention on the Rights of Persons with Disabilities? If Not, What Next?’ (An Essex Autonomy Project Paper: Report submitted to the Ministry of Justice on 22 September 2014, University of Essex 2014); Szmukler, Daw, and Callard (n 95); John Dawson (n 47); Anna Nilsson, ‘Objective and Reasonable? Scrutinising Compulsory Mental Health Interventions from a Non-discrimination Perspective’ (2014) 14 Human Rights Law Review 459–85; Australian Law Reform Commission, Equality, Capacity and Disability in Commonwealth Laws: Final Report (ALRC Report 124, 2014). 98 Fabian Freyenhagen and Tom O’Shea, ‘Hidden Substance: Mental Disorder as a Challenge to Normatively Neutral Accounts of Autonomy’ (2013) 9 International Journal of Law in Context 53–70; Natalie Banner, ‘Unreasonable Reasons: Normative Judgements in the Assessment of Mental Capacity’ (2012) 18 Journal of Evaluation in Clinical Practice 1038–44; Louis Charland, ‘Mental Competence and Value: The Problem of Normativity in the Assessment of Decision-Making Capacity’ (2001) 8 Psychiatry, Psychology and Law 135; Kim Atkins, ‘Autonomy and the Subjective Character of Experience’ (2000) 17 Journal of Applied Philosophy 71–79; Jillian Craigie, ‘Capacity, Value Neutrality and the Ability to Consider the Future’ (2013) 9 International Journal of Law in Context 4–19; Camillia Kong, ‘Case Commentary: Beyond the Balancing Scales: The Importance of Prejudice and Dialogue in A Local Authority v E and Others’ (2014) 26 Child and Family Law Quarterly 216; Jules Holroyd, ‘Clarifying Capacity: Value and Reasons’ in Lubomira Radoilska (ed), Autonomy and Mental Disorder (OUP 2012). 99 Natalie Banner and George Szmukler, ‘ “Radical Interpretation” and the Assessment of Decision-Making Capacity’ (2013) 30 Journal of Applied Philosophy 379. 100 Lucy Series, ‘Relationships, Autonomy and Legal Capacity: Mental Capacity and Support Paradigms’ (2015) 40 International Journal of Law and Psychiatry 80– 91; Susan Stefan, ‘Silencing the Different Voice: Competence, Feminist Theory and Law’ (1992–1993) 47 Miami Law Review 763. 101 102 103 104 Para 15. Para 14. Para 14. Para 15. 96 97
series and nilsson
354
Equal Recognition before the Law
variations in decision-making skills across the population.105 Rather, it maintains that mental incapacity should not form the basis of restrictions on legal capacity. This claim, that functional tests are discriminatory, is pivotal to debates around article 12 CRPD.
4.3 Enjoyment of Legal Capacity ‘on an equal basis with others’ Article 12(2) CRPD requires that disabled people enjoy legal capacity on an equal basis with others. Yet, equality is a notoriously slippery concept, whose meanings depend on values and policy as much as logic.106 At a minimum, article 12(2) requires that legal capacity regimes do not discriminate against disabled people. Article 2 CRPD defines ‘discrimination on the basis of disability’ as: any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including denial of reasonable accommodation.
It is clear that this encompasses both direct and indirect forms of discrimination. Direct discrimination occurs where a group with a protected characteristic (such as disability) is explicitly singled out for different treatment that disadvantages members in comparison with others. In many jurisdictions restrictions on legal capacity are explicitly based on a person’s disability. This is especially true of ‘status’ based approaches to legal capacity, but many laws predicated on a functional or outcome approach may also include a diagnostic threshold. For example, under the MCA a person who fails the functional test is only treated as lacking mental capacity if this is caused by ‘an impairment or disturbance in the functioning of the mind or brain’.107 Tellingly, this diagnostic threshold was included because: ‘not to have a threshold of mental disorder . . . places too heavy a burden on the functional test . . . this test is not easy to define or to apply, particularly as to the degree of incapacity which is required’.108 Although strictly speaking the MCA’s diagnostic threshold can apply to conditions that do not constitute a disability,109 it is increasingly considered to be a form of direct discrimination because it explicitly treats people differently on the basis of cognitive impairments.110 One option for the achievement of formal equality that has been enthusiastically pursued in connection not only with respect to article 12 CRPD, but also article 14 on liberty and security of the person, is the creation of ‘disability-neutral’ criteria to replace standards for interventions or practices that restrict legal capacity, which are currently linked to disability. For example, it has been proposed that instead of creating special 105 There is admittedly a tension between this claim of ‘natural’ variation across the population in para 13 and the later argument in para 15 that mental capacity is not a ‘naturally occurring phenomenon’. This tension might be resolved if the former interpretation of ‘natural’ is read as meaning ‘ordinary variation within all humans’, and the latter is read as denying that this variation is part of a ‘natural kind’ but is socially constructed. 106 Sandra Fredman, Discrimination Law (2nd edn, Clarendon 2011) 1. 107 Mental Capacity Act 2005 s2(1). 108 Law Commission, Mentally Incapacitated Adults and Decision-Making: A New Jurisdiction (Law Com No 128, 1993) para 3.11. 109 Szmukler, Daw, and Callard (n 95). 110 Flynn and Arstein-Kerslake (n 2); Martin and others (n 38); Martin and others (n 97); Peter Bartlett, ‘The United Nations Convention on the Rights of Persons with Disabilities and Mental Health Law’ (2012) 75 Modern Law Review 752–78.
series and nilsson
Article 12 CRPD
355
criminal offences relating to sexual activity with people with mental and intellectual disabilities, a disability-neutral approach to consent should be taken based on a more universal understanding of vulnerability to sexual abuse and sexual violence.111 Disability neutral doctrines may help to challenge the stigma and othering of disabled people and shift the focus of debates to ‘the legitimate reach of the law into the autonomy of all citizens’.112 They force legislators to confront uncomfortable questions about why laws restricting legal capacity are acceptable if imposed on people with mental disabilities but not the general population.113 Yet, disability-neutral doctrines are not a panacea for problems of discrimination. They are difficult to frame and apply in a non-arbitrary fashion, and are associated with risks of political abuse.114 Neither do disability-neutral standards necessarily assist disabled people currently deprived of legal capacity; they may simply widen the net. Paradoxically, this may mean that more disabled people are subject to restrictions on legal capacity.115 Some view net widening as positively advantageous, as it means that non-disabled people may ‘benefit’ from protective interventions.116 Depending on one’s perspective, disability- neutral standards might be viewed as levelling up or levelling down to achieve formal equality. More problematic from an equalities perspective is the potential for disability-neutral laws to be applied in indirectly discriminatory ways.117 Fredman defines indirect discrimination as having three elements: equal treatment, a disproportionately exclusionary impact on those sharing a protected characteristic, and the absence of acceptable justification.118 It is based on a comparison between the impact an apparently neutral criterion or practice has on a group with the protected characteristic and a comparator group. This comparison is often made relying upon statistics. For example, the Czech Republic had used IQ tests to determine which children should go to ‘special schools’. Statistics demonstrated that these disproportionately impacted on Roma children, and the European Court of Human Rights eventually concurred that this was evidence of indirect discrimination.119 Fredman also describes an alternative approach from EU law, whereby a statistical demonstration of disproportionate impact may not be necessary if it can be demonstrated that a criterion is ‘intrinsically liable’ to affect a particular group more than others.120
111 Anna Arstein-Kerslake, ‘Understanding Sex: The Right to Legal Capacity to Consent to Sex’ (2015) 30 Disability & Society 1459–73; Beverley Clough, ‘‘Vulnerability and Capacity to Consent to Sex—Asking the Right Questions?’ (2014) 26 Child and Family Law Quarterly 371. 112 Gooding and Flynn (n 76) 266. 113 Peter Bartlett, ‘A Mental Disorder of a Kind or Degree Warranting Confinement: Examining Justifications for Psychiatric Detention’ (2012) 16 International Journal of Human Rights 831–44; Kanter (n 16). 114 Kanter (n 16) 143–48; Bartlett, (n 113); Phil Fennell and Urfan Khaliq, ‘Conflicting or Complementary Obligations? The UN Disability Rights Convention, the European Convention on Human Rights and English Law’ [2011] European Human Rights Law Review 662–74. 115 116 Series (n 100). Jonathan Herring, Vulnerable Adults and the Law (OUP 2016) 63. 117 Gooding and Flynn, (n 76); Anna Nilsson, ‘Objective and Reasonable? Scrutinising Compulsory Mental Health Interventions from a Non-discrimination Perspective’ (2014) 14 HRLR 459–85; Kanter (n 16); Bartlett (n 113). Both Kanter and Bartlett discuss disability neutral criteria for detention, rather than restrictions on legal capacity. 118 Fredman (n 106). 119 DH and Others v The Czech Republic (App no 57325/00) [2007] ECHR 922. Example cited by Fredman, ibid. 120 Citing Case C-237/94 O’Flynn v Adjudication Officer [1996] 3 CMLR 103, decided by the CJEU.
series and nilsson
356
Equal Recognition before the Law
Several scholars121 argue that functional tests of capacity (decoupled from diagnostic criteria) are a potentially non-discriminatory way of restricting rights to self-determination. For example, Nilsson highlights that ‘somatic’ states such as pain or fever, which often occur in the absence of disability, may impede decision-making abilities.122 Szmukler, Daw and Callard give an example of a person who develops delirium as a result of an adverse reaction to drugs used for heart failure, who may receive treatment without consent on the basis of mental incapacity.123 Martin gives the example of ‘someone who has had too much to drink on a Saturday night’.124 In other words, they invoke a comparator, to make the case that functional tests—because they can be applied to non-disabled persons—are not discriminatory. The selection of these particular comparators is, however, unlikely to satisfy those making the argument that functional tests have a disparate impact on disabled people. This is because the kinds of interferences of concern are not the short term interferences that these examples evoke, rather they are concerned with abolishing the legal basis for measures such as institutionalization, forced psychiatric treatments, entry into guardianship, involuntary sterilization, loss of rights to marry and found a family or to engage in sexual relationships.125 Adopting fever or concussion etc as the comparator misses the wider concerns about the consequences of deprivation of legal capacity for disabled people that informed advocacy for article 12. Yet, if these concerns are what prompted the call for universal legal capacity, it is difficult to see what kinds of non-disabled comparator groups would be appropriate, since there are very few instances of these kinds of measures occurring in relation to non-disabled people. Thus the identification of appropriate comparators remains a significant challenge for those arguing that functional tests are not indirectly discriminatory. The counter-claim that functional tests are indirectly discriminatory is made in General Comment No 1 and in several places in the literature, although it is not always easy to discern precisely what kind of indirect discrimination is being identified. Some express concern about the targeting of mental capacity assessments at disabled people.126 Others highlight the difficulty of disentangling functional incapacity from disability, diagnosis, or impairment,127 or claim that a person’s mental impairment ‘plays a major role in the determination’ of functional capacity.128 121 Szmukler, Daw, and Callard, (n 95); Dawson (n 47); George Szmukler and Michael Bach, ‘Mental Health Disabilities and Human Rights Protections’ (2015) 2 Global Mental Health; Martin and others (n 38); Martin and others (n 97); Nilsson (n 97). 122 123 Nilsson (n 121). Szmukler, Daw, and Callard, (n 95). 124 Wayne Martin, ‘Mental Capacity Law Discussion Paper: Consensus Emerges in Consultation Roundtables: The MCA is Not Compliant with the CRPD’ (39 Essex St Mental Capacity Law Newsletter, Issue 49, August 2014). 125 eg Oliver Lewis, ‘Advancing Legal Capacity Jurisprudence’ [2011] European Human Rights Law Review 700–14; Anna Arstein-Kerslake, ‘Legal Capacity and Supported Decision-Making: Respecting Rights and Empowering People’ in Charles O’Mahony and Gerard Quinn (eds) The United Nations Convention on the Rights of Persons with Disabilities: Comparative, Regional and Thematic Perspectives (Intersentia 2016); Robert Dinerstein, ‘On Torture, Ill-Treatment and People with Psychosocial and Intellectual Disabilities: Some Thoughts About the Report of the Special Rapporteur’, in Implementing A Paradigm Shift: Implementing the Convention on the Rights of Persons with Disabilities, in the Context of Mental Disability Law (Washington College of Law 2014). 126 Dhanda (2006–07) (n 2) 445-46. See also General Comment No 1, para 15. 127 Peter Bartlett, ‘The United Nations Convention on the Rights of Persons with Disabilities and the Future of Mental Health Law’ (2009) 8 Psychiatry 496–98. 128 Arstein-Kerslake and Flynn (n 2) 87.
series and nilsson
Article 12 CRPD
357
Concerns about targeting assessments of mental capacity towards disabled people are likely to be well founded for two key reasons. Firstly, some targeting of tests towards disabled people may undeniably occur because of prejudice. In the UK, some physically disabled people have been prevented from voting because of perceptions that they are ‘incompetent’.129 But even absent such prejudice, the mental capacity of disabled people is disproportionately more likely to be called into question because their choices and actions are simply more visible to third parties who might initiate guardianship or deprivation of legal capacity procedures if they rely upon others for healthcare or support, whereas ‘incapable’ decisions made by non-disabled people are less likely to be flagged for intervention. Clearly, the requirement that all adults demonstrate ‘mental capacity’ for all decisions would be impracticable and hence some targeting would be inevitable for decision- specific approaches. But even if a regime of universal mental capacity assessment did exist in some areas—for example, suppose any person applying for a marriage license or making a will was required to undergo a test of mental capacity—such tests would be inherently liable to identify people with mental disabilities as lacking mental capacity because they were designed to pick out specific kinds of cognitive functioning that are found more frequently in particular clinical groups than in the general population.130 Proponents of functional tests would no doubt recognize this, thus presumably their defence of the tests as non-discriminatory must rest on justifying their disproportionate impact on disabled people. Another disability-neutral approach has focused on harm. These approaches tend to respond to the ‘troubling moral dilemmas’131 that can arise if the universal legal capacity paradigm prohibits all possible tools for non-consensual intervention. Bach and Kerzner propose a framework for interventions to prevent ‘serious adverse effects’.132 Gooding and Flynn suggest that the doctrine of necessity, codified in a non-discriminatory way, could replace mental health laws and identify ‘specific thresholds for overriding autonomy in emergency circumstances’.133 Flynn and Arstein-Kerslake134 propose disability-neutral criteria for state interventions ‘based on risk of imminent and serious harm to the individual’s life, health or safety’. They argue for a principle of proportionality which would, in their view, permit interventions such as preventing a person from jumping from a high building, but which would not permit forced feeding or forced medication. Minkowitz raises concerns about the absence of a principled distinction in their scheme between those rights to bodily autonomy that are protected and those which are limitable135 and Dhanda questions how it differs from the ‘old paradigm’.136
129 Capability Scotland, Disability Action Northern Ireland and Scope Polls Apart 2010: Opening Elections to Disabled People (2010). 130 Appelbaum and Grisso (1988) and Grisso and Appelbaum (1995) (n 92). 131 Piers Gooding, ‘Navigating the ‘Flashing Amber Lights’ of the Right to Legal Capacity in the United Nations Convention on the Rights of Persons with Disabilities: Responding to Major Concerns’ (2015) 15 Human Rights Law Review 45–71. 132 Michael Bach and Lana Kerzner, A New Paradigm for Protecting Autonomy and the Right to Legal Capacity (Prepared for the Law Commission of Ontario 2010). 133 Piers Gooding and Eilionóir Flynn, ‘Querying the Call to Introduce Mental Capacity Testing to Mental Health Law: Does the Doctrine of Necessity Provide an Alternative?’ (2015) 4 Laws 245–71. 134 Eilionóir Flynn and Anna Arstein-Kerslake, ‘State Intervention in the Lives of People with Disabilities: The Case for a Disability Neutral Framework’ (2017) 13 International Journal of Law in Context 39–57. 135 136 Minkowitz (n 25). Dhanda (2017) (n 88).
series and nilsson
358
Equal Recognition before the Law
Harm, or its close relative, risk, is already a criterion, along with diagnosis, of many mental health and guardianship laws, and has come in for fierce criticism for its poor predictive quality and a detrimental impact on relationships between service users and professionals.137 The intervention thresholds proposed here appear higher than under most existing mental health and guardianship laws, reflecting the principled approach to the ‘dignity of risk’ associated with the universal legal capacity paradigm.138 However, such proposals are likely to be politically controversial for some states parties, as they simultaneously narrow the scope of intervention in situations that some would regard as intolerable and expand the scope of compulsory powers to other populations who might be deemed at risk. Brosnan and Flynn have attempted to extricate a disability neutral approach to informed consent from functional tests of capacity, influenced by feminist approaches to consent to sex.139 They argue that a valid consent can only be given in the absence of coercion and power imbalances. If these conditions are satisfied, and the person has been provided with appropriate information, then consent is provided by the expression of the person’s will and preferences. If the expression of the person’s will and preferences is ‘clear’, then any refusals of treatment should be respected. If it is ‘unclear’ then a valid ‘informed consent’ may be inferred based on the ‘best interpretation’ of the person’s will and preferences (a process discussed under article 12(4), below). Brosnan and Flynn do seem to view ‘understanding’ as an ‘essential ingredient’ for consent, and suggest that ‘misunderstanding’ information might invalidate consent. It could be inferred from these premises that a refusal of consent based on a misunderstanding was not a valid refusal, or was ‘unclear’. If so their approach does seem to incorporate a minimalist functional test of understanding, in addition to wider relational criteria.
4.4 Legal Capacity and Criminal Law Legal capacity is also relevant to questions of criminal responsibility and criminal trial procedures. The General Comment on article 12 is silent on questions of criminal responsibility. However, in 2009 the Office of the United Nations High Commissioner for Human Rights, stated that article 12 requires the abolition of criminal defences ‘based on the existence of a mental or intellectual disability’ and called for disability neutral doctrines on the subjective element of a crime.140 More recent concluding observations from the CRPD Committee have recommended, under art 14, that states parties review and amend criminal legislation to eliminate declarations of non-responsibility on grounds of disability.141 137 George Szmukler and Nikolas Rose, ‘Risk Assessment in Mental Health Care: Values and Costs’ (2013) 31 Behavioral Sciences & the Law 125–40; Michael Coffey and others, ‘Ordinary Risks and Accepted Fictions: How Contrasting and Competing Priorities Work in Risk Assessment and Mental Health Care Planning’ 20 Health Expectations 3 471–83. 138 Flynn and Arstein-Kerslake (n 2); Bach and Kerzner (n 132); Piers Gooding, ‘Supported Decision- Making: A Rights-Based Disability Concept and its Implications for Mental Health Law’ (2012) 5 Psychiatry, Psychology and Law 431–51; Bernadette McSherry, ‘Mental Health Laws: Where to from Here?’ (2014) 40 Monash University Law Review 175. 139 Liz Brosnan and Eilionóir Flynn, ‘Freedom to Negotiate: A Proposal Extricating “Capacity” from “Consent” ’ (2017) 13 International Journal of Law in Context 58–76. 140 UN Human Rights Council, ‘Thematic Study by the Office of the United Nations High Commissioner for Human Rights on enhancing awareness and understanding of the Convention on the Rights of Persons with Disabilities’ UN Doc A/HRC/10/48 (26 January 2009) para 47. 141 CRPD Committee, ‘Concluding Observations on the Plurinational State of Bolivia’ UN Doc CRPD/C/ BOL/CO/1 (4 November 2016), paras 35–36 and Colombia UN Doc CRPD/C/COL/CO/1 (30 September 2016) para 38.
series and nilsson
Article 12 CRPD
359
It might be thought surprising that disability rights advocates would argue for the abolition of insanity defences that many disabled people rely upon in criminal trials, yet arguably it is the logical corollary of the universal legal capacity paradigm. Minkowitz comments that ‘legal capacity entails responsibility for one’s acts and choices’.142 Reasons for addressing the insanity defence extend beyond formal equality: it is associated with the wider stigma endured by people with mental disabilities143 and its deployment typically results not in release from detention but diversion into involuntary detention and treatment, aimed at protecting the public and treating the offender. In some cases, this confinement may outlast ordinary penal sentences for the alleged offence. Critics of the insanity defence accordingly question whether it confers benefits upon disabled people.144 Appelbaum145 and Perlin146 have expressed concern that the abolition of the insanity defence would lead to greater numbers of people with mental disabilities being convicted and imprisoned. Prominent user and survivor scholars and activists have also expressed concern. Jones and Shattell argue that proposals to sacrifice the ‘interests of individuals who have committed otherwise criminal acts due to temporarily but profoundly altered beliefs or states for the sake of a generalized and decontextualized “right” to legal capacity’ should be ‘subject to the highest level of critical scrutiny and ethical reflexivity’.147 Plumb has expressed concerns about a libertarian ethos and ‘ “moral distancing” from people who “don’t behave well” during times of great distress or “altered states” ’.148 Proponents of the abolition of the insanity defence envisage that already existing ‘disability-neutral’ defences such as mistake, necessity, duress or self-defence would be available and adapted to address the specific circumstances of alleged offenders with mental disabilities.149 Bartlett comments that crafting such defences ‘is likely to be a fiercely complex undertaking’.150 The most considered attention to this question to date is by Minkowitz151 and Slobogin.152
142 Tina Minkowitz, ‘A Response to the Report by Juan E Mendez, Special Rapporteur on Torture, Dealing With Torture in the Context of Healthcare, as it Pertains to Nonconsensual Psychiatric Interventions’, in ‘Torture in Healthcare Settings: Reflections on the Special Rapporteur on Torture’s 2013 Thematic Report’ (Washington College of Law, Center for Human Rights & Humanitarian Law: Anti-Torture Initiative 2014). 143 Centre for Disability Law & Policy, ‘Submission to the Law Reform Commission on its Fourth Programme of Law Reform’ (NUI Galway 2012). 144 Dhanda (2006–07) (n 2); Minkowitz (n 142); Tina Minkowitz, ‘Rethinking Criminal Responsibility from a Critical Disability Perspective: The Abolition of Insanity/Incapacity Acquittals and Unfitness to Plead, and Beyond’ (2014) 23 Griffith Law Review 434–66. 145 Paul S Appelbaum, ‘Protecting the Rights of Persons With Disabilities: An International Convention and Its Problems’ (2016) 67 Law & Psychiatry 366–68. 146 Michael Perlin, ‘ “God Said to Abraham/Kill Me a Son”: Why the Insanity Defence and the Incompetency Status Are Compatible with and Required by the Convention on the Rights of Persons with Disabilities and Basic Principles of Therapeutic Justice’ (NYLS Legal Studies Research Paper, New York Law School 2015). 147 148 Jones and Shattell (n 5). Plumb (n 5). 149 Dhanda (2006–07) (n 2); Flynn and Arstein-Kerslake (n 2). 150 Peter Bartlett, ‘Implementing A Paradigm Shift: Implementing the Convention on the Rights of Persons with Disabilities, in the Context of Mental Disability Law’, in ‘Torture in Healthcare Settings: Reflections on the Special Rapporteur on Torture’s 2013 Thematic Report’ (Washington College of Law, Center for Human Rights & Humanitarian Law: Anti-Torture Initiative, 2014). 151 Minkowitz (n 144). 152 Christopher Slobogin, ‘An End to Insanity: Recasting the Role of Mental Disability in Criminal Cases’ (2000) 86 Virginia Law Review 1199–47; Christopher Slobogin, ‘Eliminating Mental Disability as
series and nilsson
360
Equal Recognition before the Law
Slobogin argues that as mens rea (the mental element of a crime) is increasingly responsive to the situation and subjective experience of alleged offenders, the insanity defence has lost much of its raison d’être. Instead, he proposes that by examining the beliefs, emotional state and circumstances of the alleged offender at the time of the crime under existing mainstream defences such as duress or mistake, people with mental disabilities can be availed of defences that take into account their circumstances whilst integrated into the mainstream. However, Slobogin envisages that even those acquitted under these defences might be diverted into psychiatric detention if they are still regarded as dangerous to society. Minkowitz adapts Slobogin’s approach, but rejects his diversion proposals.153 Peay questions the extent to which apparently disability-neutral defences, such as duress or mistaken beliefs, are truly disability-neutral if they take into consideration beliefs or other elements of mens rea that are linked to a person’s mental disorder.154 Minkowitz addresses this argument head on, maintaining that ‘unusual mental phenomena or beliefs’ should be treated like any other perceptions, beliefs or worldviews and should not imply the absence of criminal intent. Yet other survivor activists are less prepared to draw this equivalence; Anne Plumb comments ‘Most people have some questionable or unusual beliefs but there is something about ours that may make them more problematic.’155 Perlin writes that proposed adapted mainstream defences are the insanity defence, but not so characterized, and to say otherwise is merely ‘semantics’.156 Yet, ‘semantics’ are important for removing the stigma carried by the insanity defence and a cogent argument for ‘mainstreaming’ the insanity defence. The more serious problems with the proposals are epistemological and consequentialist. An inquiry into mens rea—under the insanity defence or mainstream defences— requires an analysis of the intentions of the alleged offender. Yet Dawson157 highlights that this entails an assessment of the ‘inner-workings of the human mind’—an undertaking criticised in the General Comment in connection with mental capacity assessments.158 A ‘thin’ understanding of intentionality for the purposes of legal capacity, that does not entail understanding the nature of one’s acts,159 or which treats altered states simply as unusual beliefs, could have stark consequences for those with conditions that impair understanding. It is hard to see how to avoid this without an analysis of a person’s understanding and beliefs, yet such an analysis again takes us back towards elements of the functional test. The question of diversion also raises intractable problems. Diversion into psychiatric detention and forced treatment is certainly problematic from the perspective of other CRPD rights. Yet without some alternative mechanism for public protection, if it is
a Legal Criterion in Deprivation of Liberty Cases: The Impact of the Convention on the Rights of Persons with Disabilities on the Insanity Defense, Civil Commitment, and Competency Law’ (Vanderbilt Public Law Research Paper No 14–23, Vanderbilt University Law School, 2014); Christopher Slobogin, Minding Justice: Laws that Deprive People with Mental Disability of Life and Liberty (Harvard University Press 2006). Minkowitz (n 144). Jill Peay, ‘Mental Incapacity and Criminal Liability: Redrawing the Fault Lines?’ (2015) 40 International Journal of Law and Psychiatry 25–35. 155 156 157 Plumb (n 5). Perlin (n 146). Dawson (n 47) 74. 158 159 General Comment No 1 para 15. Arstein-Kerslake and Flynn (n 89) 25. 153 154
series and nilsson
Article 12 CRPD
361
felt that a person’s altered states or limited understanding is likely to lead them to repeat the potentially criminal act, then judges and juries face an invidious choice: to find the individual guilty and imprison them, or to release them back into the community, notwithstanding the danger posed. Article 12 is also relevant to criminal trial procedures, although in its concluding observations on states parties the CRPD Committee has tended to raise this issue under articles 13 and 14 rather than article 12.160 In the literature the focus has been on the question of whether a defendant with a mental disability is ‘fit to plead’, that is, whether they are able to understand and participate in their trial. ‘Unfitness to plead’ procedures may involve alternative arrangements that are intended to help secure justice both to victims and to defendants unable to participate in their defence. For example, under a ‘trial of the facts’161 a representative is appointed to defend the accused and make decisions on their behalf, but it can only establish the facts and not guilt because it does not determine mens rea.162 Like the insanity defence, procedures for defendants deemed ‘unfit to plead’ are often linked to diversion into mental health detention, forced treatment, or community supervision, which have been criticized by disability rights advocates.163 The Law Commission in England and Wales has proposed an adapted version of the functional test of capacity to assess unfitness to plead in criminal proceedings.164 In their original proposals the Law Commission argued for a ‘diagnostic threshold’. Gooding and O’Mahony commented that this would be likely to violate article 12(2) CRPD, and ironically render the reforms less compliant than the provisions they replaced.165 At consultation the Commission sought the views of prominent disability rights experts166 and— despite opposition from psychiatrists— ultimately decided against including a diagnostic threshold. Yet, in part this decision was based on doubt that diagnostic thresholds made any real difference either way: they had to be so widely drawn to include all possible barriers to participation, and even without a formal threshold, diagnosis could still play a part in assessments.167
160 See eg CRPD Committee, ‘Concluding Observations on Moldova’ UN Doc CRPD/C/MDA/CO/1 (18 May 2017) para 28; ‘Concluding Observations on the Plurinational State of Bolivia’ UN Doc CRPD/C/BOL/ CO/1 (4 November 2016) para 35; on Italy UN Doc CRPD/C/ITA/CO/1 (1 October 2016) paras 35–36’ and on Portugal UN Doc CRPD/C/PRT/CO/1 (20 May 2016) paras 32 and 33. 161 A ‘trial of the facts’ determines whether or not the alleged act (actus reus) took place, but cannot find the defendant guilty as it does not consider mens rea. 162 See eg Criminal Procedure (Insanity) Act of 1964 of England and Wales. 163 Centre for Disability Law & Policy (n 143); Tina Minkowitz (n 144); Piers Gooding and Charles O’Mahony, ‘Laws on Unfitness to Stand Trial and the UN Convention on the Rights of Persons with Disabilities: Comparing reform in England, Wales, Northern Ireland and Australia’ (2016) 44 International Journal of Law, Crime and Justice 122–45; Piers Gooding and others, ‘Submission to Senate Community Affairs References Committee inquiry on the indefinite detention of people with cognitive and psychiatric impairment in Australia: Addressing the indefinite detention of people with cognitive and psychiatric impairment due to unfitness to plead laws’ (Melbourne Social Equity Institute, University of Melbourne, 21 March 2016). 164 Law Commission, ‘Unfitness to Plead: An Issues Paper’ (2014); Law Commission, Unfitness to Plead (Volume 1: Report, Law Com No 364 2016). 165 Gooding and O’Mahony (n 163). 166 Including Professor Rosemary Kayess, who was involved in the negotiations of Art 12 CRPD and Professor Anna Lawson. 167 Law Commission No 364, Vol 1 (n 164).
series and nilsson
362
Equal Recognition before the Law
4.5 Evaluating Equalities and Discrimination Arguments about Legal Capacity The concepts of equality and non-discrimination are central to arguments for the universal legal capacity paradigm. Yet, these cannot be understood in a purely quantitative sense, since as Dawson observes, we cannot fix questions of discrimination without reaching agreement on what constitutes disadvantage.168 It is here, I suggest, that the real heat of debates concerning article 12 of the CRPD lies, rather than in technical questions of statistical comparisons. An argument that a particular legal capacity regime discriminates against disabled people must make the case that it disadvantages them. The clear premise of the universal legal capacity literature is that deprivation of legal capacity itself is exclusionary and disadvantageous, and results in further disadvantages such as guardianship, forced treatment, and institutionalization. Whilst these views would be shared by many in the disability and user and survivor movements, they are not universally held. Evidence that some regard such interventions as at least sometimes beneficial is widespread. Herring argues that ‘best interests’ safeguarding interventions should apply to non-disabled people as well, because they are beneficial.169 The jurisprudence of the European Court of Human Rights frames life-saving medical treatments against the will of a person who lacks mental capacity as a positive obligation under human rights law.170 Some argue that guardianship and mental health laws are a critical means of protecting and upholding the rights of people with mental disabilities.171 Advocates of the universal legal capacity paradigm do not share these views. This literature highlights the harms of guardianship, institutionalisation and forced treatment,172 and the existential risks of limiting individuals’ opportunities for self-determination, self- expression, and thereby flourishing.173 Many advocates of universal legal capacity would agree with Glover, that many people ‘would prefer to forgo a great deal of happiness, or risk a fair amount of disaster, to losing control of our lives in this way’.174 Indeed Minkowitz has stated that she ‘would prefer death to another round of forced psychiatry’.175 However, some take a more nuanced view. Plumb argues that the disadvantage is not intervention per se, but the kinds of intervention represented by forced psychiatric detention and treatments.176 Evaluations of equality and discrimination claims regarding legal capacity therefore must engage with the diversity of views regarding the outcomes of legal capacity and guardianship regimes.
169 Dawson (n 47). Jonathan Herring (n 116). Arskaya v Ukraine (App no 45076/05) [2013] ECHR 1235. 171 Adrian Ward, ‘Adults with Incapacity: Freedom and Liberty, Rights and Status: Part 1’ [2011] Scots Law Times 21–25; Nina A Kohn and Jeremy A Blumenthal, ‘A Critical Assessment of Supported Decision-Making for Persons Aging with Intellectual Disabilities’ (2013) 7 Disability & Health Journal S40–S43; Freeman and others (n 47); Dawson (n 47). 172 Minkowitz (n 2); Oliver Lewis (n 125). 173 Flynn and Arstein-Kerslake (n 2); Bach and Kerzner (n 132); Gerard Quinn and Anna Arstein-Kerslake, ‘Restoring the “Human” in “Human Rights”—Personhood and Doctrinal Innovation in the UN Disability Convention’ in Conor Gearty and Costas Douzinas (eds), Cambridge Companion to Human Rights Law (CUP 2012). 174 Jonathan Glover, Causing Death and Saving Lives (Penguin 1977) 80–81. 175 Minkowitz, in Spandler, Anderson, and Sapey (n 3). 176 Plumb, in Spandler, Anderson, and Sapey (n 3). 168 170
series and nilsson
Article 12 CRPD
363
A secondary question is whether the CRPD permits any justification to outweigh any disadvantage experienced by those deprived of legal capacity. Under the ICCPR ‘not every differentiation of treatment will constitute discrimination, if the criteria for such differentiation are reasonable and objective and if the aim is to achieve a purpose which is legitimate under the Covenant’.177 Nilsson argues that although the CRPD text itself is silent on justifications, there is support for such a reading of article 2 CRPD in the travaux.178 On this basis, she argues that mental health laws based on functional capacity criteria potentially satisfy these tests. Whether functional tests are ‘reasonable’ and ‘objective’ lies beyond the scope of this article, but is an important question for those pursuing these arguments. Presumably securing other rights within the Convention would potentially be a legitimate aim for an intervention. Proponents of protective interventions are likely to emphasize article 16 (protection from violence, exploitation, and abuse), article 25 (health) and article 10 (the right to life). However, this in itself raises a question of how potentially conflicting rights should be balanced, and it is striking in this respect that ‘individual autonomy including the freedom to make one’s own choices’ appears within the CRPD’s first general principle, whereas ‘protection’ is nowhere in that list.179 The CRPD Committee’s response to a complaint from five adults with intellectual disabilities who were deprived of the right to vote because they were subject to guardianship is instructive of how it might regard such justifications. It found that the assessment of individuals’ capacity to vote was ‘discriminatory in nature’ and thus not serving a legitimate purpose, nor was it ‘proportional to the objective to preserve the integrity of the state party’s political system’.180 The Committee thus did employ the criteria from the ICCPR for evaluating discrimination claims. However, its findings in that case and its wider views expressed in General Comment No 1 indicate that it is unlikely to regard functional tests of capacity as sufficiently objective and reasonable, and unlikely to find measures such as forced treatment or institutionalization as proportionate to serving any legitimate aims within the CRPD.
5. Paragraph 3 Article 12(3) forms the foundation of the ‘support paradigm’ underpinning universal legal capacity. It is based on a radical reimagining of legal personality that moves away from what Naffine calls ‘the classic contractor,’181 or what Quinn and Arstein-Kerslake182 call ‘the myth of the masterless man’, towards an interconnected and interdependent vision of humanity.183 This approach is influenced by social184 and human rights185 models 177 UNHRCtee, ‘General Comment No 18: Non-discrimination’ (Adopted at the 37th Session of the UN Human Rights Committee on 10 November 1989). 178 179 Nilsson (n 97). Art 3 CRPD. 180 Zsolt Bujdosó and five others v Hungary, ‘Views adopted by the UN Committee for the Rights of Persons with Disabilities on Communication No 4/2011’ (10th session, 2 to 13 September 2013) UN Doc CRPD/C/ 10/D/4/2011 (20 September 2013). 181 182 183 Naffine (n 60). Quinn and Arstein-Kerslake (n 173) 37. ibid 38. 184 There are several variants of social models of disability, see Rannveig Traustadóttir, ‘Disability Studies, the Social Model and Legal Developments’ in Oddny M Arnardóttir and Gerrard Quinn (eds), The UN Convention on the Rights of Persons with Disabilities: European and Scandinavian Perspectives (Martinus Nijhoff 2009). 185 Theresia Degener, ‘A New Human Rights Model of Disability’ in Valentina Della Fina, Rachele Cera, and Giuseppe Palmisano (eds), The United Nations Convention on the Rights of Persons with Disabilities: A Commentary (Springer 2017).
series and nilsson
364
Equal Recognition before the Law
of disability, which view disability as arising from an interaction between impairment and social, environmental and other barriers, captured in article 1 CRPD. Yet, this vision is not tightly connected to the concept of impairment; Quinn and Arstein-Kerslake maintain that it is ‘a cosmopolitan theory of justice that happens to be grounded on disability’.186 It relies on a view that all decisions—even those of prime ministers187—are connected to a network of supports and influences.
5.1 Support for the Exercise of Legal Capacity Article 12(3) calls for supports for the exercise of legal capacity. At the risk of pedantry, it is important to note that article 12(3) does not itself call for ‘supported decision-making’— a common gloss put on the support paradigm. The CRPD Committee adopts the terminology ‘supported decision-making regimes’ to include a wide range of supports for the exercise of legal capacity.188 I take the risk of departing from the Committee’s terminology and distinguish between ‘supports for the exercise of legal capacity’—a very broad range of supports and adaptations—and ‘supported decision-making’, which is merely one type of support for the exercise of legal capacity, which I consider in more detail below. Like Gooding,189 I feel that some of the controversies over the support paradigm can be traced to confusion generated by the terminology adopted by the Committee, which leads some to the view that all the Convention requires, or permits, is the provision of support to assist individuals make decisions for themselves. In fact the support paradigm is far broader than this. In the General Comment the Committee has emphasized that ‘ “Support” is a broad term that encompasses both informal and formal support arrangements, of varying types and intensity’.190 It lists examples of supports, including measures relating to universal design and accessibility in banks and financial institutions, forms of supported decision- making, ‘the development and recognition of diverse, non-conventional methods of communication’ and advance planning instruments.191 The General Comment also includes several statements about how the Committee envisages these supports operating. Access to supports, including advance planning instruments and supported decision-making, should be available to all and not conditional upon demonstrating particular abilities or ‘mental capacity’.192 A person must have the right not to use support.193 Supports ‘must respect the rights, will and preferences of persons with disabilities and should never amount to substitute decision- making’.194 It is not sufficient for states to adopt supported decision-making regimes; in order to comply with article 12 they must also abolish substituted decision-making regimes.195 Substituted decision-making is defined as any systems whereby: 1) ‘legal capacity is removed from a person’; 2) a substituted decision maker can be ‘appointed’ against the person’s will; or 3) any decision made by a “substitute decision maker” is based on ‘the
Quinn and Arstein-Kerslake (n 173) 38. Marianne Schulze, ‘Supported Decision-Making: For Prime Ministers Only?’ (2014) 27 Journal of Applied Research in Intellectual Disabilities 289–90. 188 189 General Comment No 1. Gooding (n 128). 190 191 General Comment No 1 para 17. General Comment No 1 para 17. 192 193 General Comment No 1 paras 17 and 29. General Comment No 1 paras 19 and 29(g). 194 195 General Comment No 1 para 17. General Comment No 1 para 28. 186 187
series and nilsson
Article 12 CRPD
365
objective “best interests” ’ of the person rather than their ‘will and preferences’.196 It is important to note that this definition of substituted decision-making does not include all forms of proxy decision-making. The General Comment acknowledges that in some circumstances it is not ‘practicable’ to determine the will and preferences of the person, despite the best efforts being made. In those circumstances, the Committee states that ‘the “best interpretation of will and preferences” must replace “best interests” determinations’.197 This means that provided the proxy is not appointed against the person’s will, and they bases any decisions on the ‘best interpretation of will and preferences’ rather than a ‘best interests’ standard, it would fall within the support paradigm and not be regarded as a ‘substituted decision’. Within the literature, interpretive approaches to will and preferences that could be used in circumstances where a person is unable to clearly express their will and preferences have come to be known as ‘facilitated decisions’.198 Critics of the universal legal capacity paradigm such as Freeman and others have argued that because of situations such as coma, ‘exceptions have to be considered’ to the prohibition on substitute decision-making.199 It is unsurprising that critics of the universal legal capacity paradigm struggle to comprehend how it can accommodate such situations, since this possibility is not explicitly stated in the General Comment, which coyly refers only to more ‘intensive’ supports being sometimes necessary.200 However, interpretive approaches such as facilitated decision-making are the answer found in the literature to the frequently posed ‘coma question’. Facilitated decisions do not fall within the technical definition of ‘substitute decisions’ found in the General Comment, although echoing the discussions during the Ad Hoc Committee meetings about situations of ‘100 per cent support’, some argue that ‘facilitated decisions’ are substituted decisions on any intuitive reading.201 Their categorization as a support is central to the universalist outlook of the support paradigm and the advocacy goal of abolishing systems of guardianship. Nevertheless, this does lead to some tricky mental gymnastics: who is exercising legal capacity in these situations? In a paper on the metaphysics of personhood, Francis and Silvers argue that in situations like these we should view the person making the facilitated decision as a kind of prosthesis, with the person they are supporting as actually making the decision.202 Yet, it is unlikely that a person, recovered from any impediment to expressing their will and preferences, would regard the decision as one that they had made (especially if they felt it did not, in fact, reflect their will and preferences). And, as Arstein-Kerslake points out, the supporter is not mechanical and traces of their influence on the decision cannot be erased.203 Legally speaking, making clear that decisions are made by the supporter ensures they are under
196 General Comment No 1 para 27; see corrigeum CRPD/C/GC/1/Corr 1: this correction is important as some forms of substituted decision-making do not involve the appointment of a decision maker, see Mental Capacity Act 2005 s 5 (England and Wales) and Mental Capacity Act (Northern Ireland) 2016 s 9. 197 General Comment No 1 para 21. 198 Bach and Kerzner (n 132); Flynn and Arstein-Kerslake (n 2). 199 200 Freeman and others (n 47). General Comment No 1 paras 17, 18, 29(b). 201 See Martin and others (n 38). 202 Lesley Francis and Anita Silvers, ‘Thinking about the Good: Reconfiguring Liberal Metaphysics (or not) for People with Cognitive Disabilities’ in Eva Feder Kittay and Licia Carlson (eds), Cognitive Disability and Its Challenge to Moral Philosophy (John Wiley & Sons 2010). 203 Anna Arstein-Kerslake, ‘An Empowering Dependency: Exploring Support for the Exercise of Legal Capacity’ (2014) 18 Scandinavian Journal of Disability Research 77–92.
series and nilsson
366
Equal Recognition before the Law
fiduciary duties towards the person. For this reason, many prefer a clearer recognition that the supporter, and not the person, is making the decision.204 The cost of putting support structures in place is a common concern in the literature.205 The General Comment states that ‘State parties must ensure that support is available at nominal or no cost to persons with disabilities and that lack of financial resources is not a barrier to accessing support in the exercise of legal capacity.’206 It also states that as supports are for the fulfilment of a civil and political right, they are not subject to progressive realization.207 Although there are examples of supported decision-making schemes that have struggled with limited resources,208 others have reduced the costs to the system overall, for example through reducing reliance on emergency welfare and health services.209 Many schemes simply formalize existing natural support networks.210 Systems of substituted decision-making also incur costs, and supported decision-making should not be regarded in isolation from these.211
5.2 Supported Decision-Making ‘Supported decision-making’ is a subset of supports for the exercise of legal capacity. It involves systems or practices whereby an individual has access to support from one or more trusted persons to assist them in making, expressing or implementing a decision. Supporters might help a person to consider the pros and cons of different options, help them to communicate their decision to others, or even help with its implementation. Critically, under systems of supported decision-making within the support paradigm, the individual exercises choice and control over who supports them and how they are supported, and they—not the supporter—make the final decision. Supported decision-making schemes may be formal—underpinned by legislation—or informal, operating without specific legal regulation. The General Comment states that ‘legal recognition of the support person(s) formally chosen by a person must be available and accessible’.212 Several jurisdictions have, or are considering, statutory schemes for the
204 Series (n 100); Booth Glen (n 8); Gooding (n 131); Gerard Quinn ‘Personhood and Legal Capacity: Perspectives on the Paradigm Shift of Article 12 CRPD’ (Harvard Law School Project on Disability Conference, 20 February 2010); Mental Disability Advocacy Center, ‘Comments on Draft General Comment on Article 12 of the Convention’ (2014); Canadian Association for Community Living, ‘Comments on Draft General Comment on Article 12 of the Convention’ (2014). Comments on the draft General Comment are available at: . 205 Gooding (n 131); Gavin Davidson and others, ‘An International Comparison of Legal Frameworks for Supported and Substitute Decision-Making in Mental Health Services’ (2016) 4 International Journal of Law and Psychiatry 30–40; Terry Carney, ‘Supported Decision-Making for People with Cognitive Impairments: An Australian Perspective?’ (2015) 4 Laws 37–59. 206 General Comment No 1 para 29(e). 207 General Comment No 1 para 30. Art 4(2) CRPD permits states to realise economic, social, and cultural rights progressively, within their available resources. Civil and political rights must be realized immediately. 208 Gooding (n 131). 209 Tommy Engman, Frida Manning, and Lena S Ekecrantz, ‘A New Profession is Born—Personligt ombud, PO’ (Socialstyrelsen Fhebe Hjälm 2008), available at: (accessed 23 February 2017). 210 eg Representation Agreement Act 1995 (British Columbia). 211 Eilionóir Flynn and Anna Arstein-Kerslake (n 2); Gooding (n 131); McSherry (n 138); UN Office of the High Commissioner for Human Rights and Inter-Parliamentary Union, From Exclusion to Equality: Realizing the Rights of Persons with Disabilities (Handbook for Parliamentarians on the Convention on the Rights of Persons with Disabilities and its Optional Protocol 2007) UN Doc HR/PUB/07/6 (2007). 212 General Comment No 1 para 29(d).
series and nilsson
Article 12 CRPD
367
appointment and legal recognition of chosen support persons for decision-making.213 These schemes provide greater control for the person supporting them, clearer recognition by third parties of the role of the supporter, and tighter regulation of how a person is to be supported, as compared to passively phrased statutory provisions which merely state that a person should not be regarded as lacking mental capacity unless support has been provided.214 Formalizing support relationships in this way means that procedural safeguards can be built in to protect against abuse, in accordance with article 12(4).215 However, the existence of formal support procedures may risk diluting the perceived legitimacy of informal supporters and could also increase the potential for supporters to misrepresent the person. Such dangers would have to be addressed through guidance, education, and monitoring. Several informal supported decision-making schemes have enjoyed considerable success. A pilot scheme in South Australia found that supported decision-making provided a viable alternative to guardianship in many cases.216 A ‘personal ombuds’ scheme in Sweden provided support for people who were reluctant to engage with conventional psychiatric and welfare services; this scheme has been so successful that similar models are being set up around the world.217 Other examples of non-statutory supported decision- making schemes suggested in the literature include: circles of support, joint crisis plans in mental health, Intentional Peer Support, peer advocacy, and even the Finnish Open Dialogue model.218 Although the General Comment maintains that supported decision-making regimes should accompany the abolition of substituted decision-making systems, in practice existing schemes operate within wider legal frameworks that may still require a demonstration of mental capacity for certain decisions to be legally effective. This raises difficult questions about the assessment of relational dimensions of mental capacity.219
213 Dinerstein (n 52); Gooding (n 131); Australian Law Reform Commission (n 46); Law Commission, Mental Capacity and Deprivation of Liberty: A Consultation Paper (Law Com No 222 2015); Representation Agreement Act 1995 (British Columbia, Canada); Decision-Making, Support and Protection to Adults Act, 2003 (Yukon, Canada); The Adult Guardianship and Trusteeship Act 2008 (Alberta, Canada); Assisted Decision-Making (Capacity) Act 2015 (Republic of Ireland); Ley 9.379 para la Promoción de la Autonomía Personal de las Personas con Discapacidad (‘Law for the Promotion of Personal Autonomy of Persons with Disabilities’, Civil Procedure Code No 9,379, Costa Rica 2016); Capacity and Guardianship (Amendment No 18) Law, 5776–2016 (Israel); Supported Decision-Making Agreement Act 2015 (Texas) SB No 1881 2015; Natural Persons and Support Measures (draft) Act (Bulgaria); The Care and Support (Independent Advocacy Support) (No 2) Regulations 2014 (England). 214 See eg Vulnerable Persons Living with a Mental Disability Act 1996 (Manitoba, Canada); Mental Capacity Act 2005 (England and Wales), ss 1(3) and 3(2); Mental Capacity Act (Northern Ireland) 2016, s5; Adults with Incapacity (Scotland) Act 2000 s1(6) and s1(5). 215 Barbara Carter and John Chesterman, ‘Supported decision-making: Background and discussion paper’ (Office of the Public Advocate, South Australia 2009). 216 Margaret Wallace, ‘Evaluation of the Supported decision-making Project’ (Office of the Public Advocate, South Australia 2012). 217 Engman, Manning, and Ekecrantz (n 209); Personligt Ombud, available at: . 218 European Union Agency for Fundamental Rights (n 54); Gooding (n 138); Advocacy for Inclusion, ‘Supported decision-making, Legal Capacity and Guardianship: Implementing Article 12 of the Convention on the Rights of Persons with Disabilities in the Australian Capital Territory’ (2012); Eilionóir Flynn and Susan Doyle, ‘Ireland’s Ratification of the UN Convention on the Rights of Persons with Disabilities: Challenges and Opportunities’ (2013) 41 British Journal of Learning Disabilities 171–80. 219 Series (n 100).
series and nilsson
368
Equal Recognition before the Law
In their literature review on supported decision-making, Kohn and Blumenthal highlight a lack of evidence for, inter alia, the rate of use of supported decision-making in jurisdictions where it is available, data on the demographics of those making formalized support agreements and of supporters, and the outcomes of supported decision-making schemes.220 They conclude that it is ‘too early to rule out the possibility it may actually disempower individuals with disabilities by facilitating undue influence by their alleged supporters’. A more recent systematic review of the literature by Davidson and others was more generous in its findings.221 Taking a broad definition of supported decision-making (for example, including advance crisis planning), they found: 1. Varying levels of interest among potential users of supported decision- making schemes to actively participate in decisions about their care and treatment; 2. Some evidence that use of supported decision-making schemes increased users’ decision-making skills, confidence, engagement with community and sense of control over their own lives; 3. Several studies indicated that ‘implementing SDM is not a simple process, it takes time and resources and may require a shift in attitudes of some care providers and in some service users themselves’; 4. The efficacy of support for decision-making is highly dependent on the way in which supporters listen to people and present choices and information. Like Kohn and Blumenthal, Davidson concluded that the available evidence on implementation and impact is limited. They comment that ‘there are important rights-based, effectiveness and pragmatic arguments for further developing and researching this approach’.222 The USA-based National Resource Center for Supported decision-making has begun a five year longitudinal project to examine whether there is a causal link between supported decision-making and increased self-determination.223 Improving the evidence base for supported decision-making is important, not least for ensuring it serves the overarching goals of the CRPD. Yet, there is likewise a dearth of evidence on the operation and effects of substituted decision-making regimes,224 and we should be cautious of holding supported decision-making schemes to higher empirical standards than substituted decision-making.
6. Paragraph 4 Article 12(4) calls for safeguards against abuse on measures relating to the exercise of legal capacity but leaves the nature of such ‘measures’ undefined. As discussed above, this paragraph represents an uneasy compromise between those who sought the abolition of substituted decision-making under the CRPD and those who viewed some form of guardianship and restrictions on legal capacity as inevitable, and thereby in need of safeguards. This paragraph has been the focus of considerable scrutiny to resolve these ambiguities.
220 Nina A Kohn and Jeremy A Blumenthal, ‘A Critical Assessment of Supported Decision-Making for Persons Aging with Intellectual Disabilities’ (2013) 7 Disability & Health Journal S40–S43. 221 222 223 Davidson and others (n 205). ibid. Dinerstein (n 52). 224 Kohn and Blumenthal (n 220); Gooding (n 131).
series and nilsson
Article 12 CRPD
369
6.1 Respect for the Rights, Will, and Preferences of the Person The phrase ‘will and preferences’ in article 12(4) was first proposed by the IDC. It seems reasonable to conclude that their intention was to limit as far as possible the scope for coercive interventions, such as forced psychiatric treatment, psychiatric detention, and guardianship. Yet, as Mladenov writes, ‘the letter of the CRPD in itself is not enough to secure its meaning’.225 The phrase has become the site of hermeneutic struggle, with cracks in its meanings being exploited by those seeking relief from some of the hard cases apparently presented by the universal legal capacity paradigm. Several proposals for reforms to legal capacity laws in light of article 12 have interpreted this principle to require rebuttable presumptions or hierarchical approaches giving primacy to the will and preferences of the person, but permitting deviations from this in certain circumstances.226 This is unlikely to go as far as some advocates for universal legal capacity wish. The CRPD Committee acknowledges that in some circumstances it will not be ‘practicable to determine the will and preferences of an individual’. In such circumstances, the General Comment states that ‘the “best interpretation of will and preferences” must replace the [sic] “best interests” determinations.’ 227 This is the approach taken under facilitated decisions, referred to above. Several commentators have highlighted the potential for a person’s ‘will’ to conflict with their ‘preferences’, or simply to have conflicting ‘will and preferences’.228 This may have a temporal dimension—a person’s past expressed will and preferences might conflict with present, less clear or stable, expressed will and preferences. There are also situations where a person could be viewed as having conflicting desires in the present. Richardson describes a person with severe anorexia, who does not want to eat, but does wish to live.229 Flynn and Arstein-Kerslake comment that where a person is self-harming yet rejects assistance ‘a verbal expression in one instance may not necessarily represent the true will and preferences of an individual’.230 Szmukler, a psychiatrist and proponent of fusion law, examines the concept of ‘will’ as it has been considered historically, in philosophy and at law, and argues that the will is ‘founded on a person’s deeply held, reasonably stable and reasonably coherent personal values’, and that this is ‘not the same as a desire, inclination, or a currently held ‘preference’, even a strongly expressed one’.231 On this view, Szmukler argues, where a person’s will and preferences appear to diverge it is important to identify a person’s ‘authentic will’ through consideration of their past expressed values (written or otherwise). He concludes that interventions that aim ‘at facilitating the expression of the person’s ‘will’, his or her deep values and commitments’ are compatible with the CRPD and would not constitute a ‘substitute decision. A similar approach has recently been taken by the German 225 Teodor Mladenov, ‘The UN Convention on the Rights of Persons with Disabilities and its Interpretation’ (2012) 7 ALTER— European Journal of Disability Research /Revue Européenne de Recherche sur le Handicap 69–82. 226 Martin and others (n 97); Australian Law Reform Commission, Equality, Capacity and Disability in Commonwealth Laws: Discussion Paper (DP 81 2014). 227 General Comment No 1 para 21. 228 Martin and others (n 9) 41; Flynn and Arstein-Kerslake (n 2); Gooding (n 128); Genevra Richardson, ‘Mental Capacity in the Shadow of Suicide’ (2013) 9 International Journal of Law in Context 87. 229 230 Richardson (n 228). Flynn and Arstein-Kerslake (n 2) 99. 231 George Szmukler, ‘The UN Convention on the Rights of Persons with Disabilities: “Rights, will and preferences” in Relation to Mental Health Disabilities’ (2017) 54 International Journal of Law and Psychiatry 90
series and nilsson
370
Equal Recognition before the Law
Constitutional Court, relying upon a distinction in German law between a person’s ‘natural will’ (natürlichen Willen) and their ‘free will’ (freien Willen).232 The Court held that the Committee’s General Comment No 1 did not address the situation where a person was unable to form a ‘free will’. There are therefore a number of circumstances where it is argued either that a person’s ‘authentic’ will is in conflict with their present preferences, or there are competing interpretations of what a person’s ‘authentic will’ consists in. In such circumstances, as Gooding observes, the adjudication of the ‘best interpretation of will and preferences’ will be fraught;233 it presents the danger of what Saks refers to as ‘choosing selves’.234 Once it is agreed that a person’s presently expressed apparent ‘will and preferences’ might not be their authentic ‘will and preferences’, this opens up an inquiry into the ‘true’ or authentic intentions of the person. This at least raises the possibility of questions such as whether the person ‘understood’ the act or decision, whether they had ‘truly’ evaluated it against their authentic beliefs and values. In short, it invites an analysis of the person’s intentionality that sounds dangerously close to presuming to assess the ‘inner-workings of the human mind’,235 and has clear parallels with functional tests of mental capacity. The ‘will and preferences’ paradigm shifts the focus from quasi-objective standards of rationality towards authenticity, but this still offers significant potential for new bases for coercion. In an effort to restrict the potential for the ‘old paradigm’ to colonise the will and preferences approach, its proponents have argued for minimalist constructions of intentionality that fix the meaning of will and preferences close to the person’s presently expressed views and behaviours. Flynn and Arstein-Kerslake, for instance, propose that ‘if in doubt, assume intention in an action, thereby allowing it to potentially be an exercise of legal agency’.236 Some propose limits on the decisions that could be made using facilitated or interpretive approaches, including sexual consent, decisions with ‘irreversible’ or ‘significant detrimental impact in the long term’ on the person’s life,237 or decisions that raise particular risks of abuse and exploitation because they so fundamentally affect personal integrity.238 Another approach to shaping when and how interpretive decisions are made regarding the person’s will and preferences is to use the law to prescribe who is responsible for this interpretation. Brosnan and Flynn write that (outside of emergencies) ‘it is particularly important that a supporter, trusted and chosen by the person, undertakes this task’ and not a healthcare professional, who would have a ‘conflict of interest’.239
6.2 Conflicts of Interest and Undue Influence Article 12(4) requires all measures relating to the exercise of legal capacity to have safeguards against ‘conflicts of interest’ and ‘undue influence’. Several authors have expressed concerns about the potential for undue influence and conflicts of interest among
232 Bundesverfassungsgericht, Beschluss (des ersten Senats) vom 26. Juli 2016—1 BvL 8/15. (Order of the First Senate of the Federal Constitutional Court, 26 July 2016)—see English language press release, available at: . 233 Gooding (n 131). 234 Elyn Saks, Refusing Care: Forced Treatment and the Rights of the Mentally Ill (University of Chicago Press 2002). 235 236 General Comment No 1 para 15. Arstein-Kerslake and Flynn (n 89) 26. 237 238 239 Brosnan and Flynn (n 139) 66. Bach and Kerzner (n 132). ibid 65.
series and nilsson
Article 12 CRPD
371
supporters,240 although such concerns can also arise within substituted decision-making systems.241 General Comment No 1 recognizes that whilst ‘all people risk being subject to “undue influence” ’, this risk ‘may be exacerbated for those who rely on the support of others to make decisions.’242 It defines undue influence ‘as occurring, where the quality of the interaction between the support person and the person being supported includes signs of fear, aggression, threat, deception or manipulation.’243 This formulation of undue influence distinguishes it from mere influence, which is intrinsic to all human relations244 and which Martin and others point out ‘might be regarded as positive, beneficial and autonomy-enhancing, and therefore as a necessary feature of any supported decision- making regime’.245 Similarly, Arstein-Kerslake argues that dependency within support relationships can be empowering.246 ‘Undue influence’ over decision-making implies that a decision is not an authentic expression of a person’s will and preferences. Some jurisdictions already operate disability- neutral equitable doctrines exist to invalidate any exercise of legal capacity subject to undue influence or related equitable concepts such as duress, ‘facility, circumvention, lesion’ (in Scots law) and ‘unconscionable bargain’ (in English law).247 Yet for the most part these concepts are deployed in law by the person (or others acting on their behalf ) as equitable principles to invalidate a legal act that has already taken place; they offer no help in shaping preventive safeguards. Nor would they assist in circumstances where a person does not recognise themselves as acting under undue influence unless there is a means for a third party to act on their behalf and without their consent. The General Comment states that there must be safeguards to protect against undue influence, yet these ‘must respect the rights, will and preferences of the person, including the right to take risks and make mistakes’.248 The dilemma, however, is that by definition where a person is subject to undue influence, the authenticity of any expression of their will is compromised.
6.3 Regular Review by a Competent, Independent, and Impartial Authority or Judicial Body The requirement for regular review by a competent, independent, and impartial authority or judicial body is strongly reminiscent of ‘old paradigm’ instruments such as the MI Principles. For those who view article 12 as permitting substitute decision-making, these represent important procedural safeguards on deprivation of legal capacity and guardianship. As Martin and others argue, this provision is rather more difficult to understand if article 12 is interpreted as prohibiting deprivation of legal capacity and guardianship, the text appears ‘to reflect the assumption that at least some measures relating to the exercise 240 Adrian Ward, ‘Adults with Incapacity: Freedom and Liberty, Rights and Status: Part 1’ [2011] Scots Law Times 21–25; Nina A Kohn and Jeremy A Blumenthal, ‘A Critical Assessment of Supported Decision-Making for Persons Aging with Intellectual Disabilities’ (2013) 7 Disability & Health Journal S40–S43; Carter and Chesterman (n 210). 241 242 Series (n 100); Re JW [2015] EWCOP 82. General Comment No 1 para 22. 243 ibid; for full disclosure, this phrase appears to have been taken from comments made about the Draft General Comment on Article 12 by the author to the CRPD Committee, available at: . 244 245 246 Series (n 100). Martin and others (n 38). Arstein-Kerslake (n 203). 247 248 Martin and others (n 38). General Comment No 1 para 22.
series and nilsson
372
Equal Recognition before the Law
of legal capacity might take the form of limitations or constraints’.249 Yet as we have seen, some measures envisaged as operating under the support paradigm do bear a striking resemblance to substitute decision-making, in particular facilitated decision-making, any provisions permitting emergency interventions or other situations where ‘the best interpretation of will and preferences’ approach is adopted. Given the potential for abuse, or even for serious disagreement, under these mechanisms, it is likely that strong safeguards would be required to protect the person’s rights . There has, as yet, been little elaboration of the guarantees that would attend any review by a competent, independent, and impartial authority or judicial body in connection with article 12 CRPD. It is not discussed by the CRPD Committee in the General Comment or concluding observations on article 12. Existing jurisprudence on the right to equality before courts and tribunals and to a fair trial under the ICCPR,250 and other regional human rights instruments,251 provides a useful starting point. However, mainstream human rights approaches to due process guarantees would need to be adapted to take into account the specific requirements for disabled people to enjoy effective access to justice (on which see article 13 CRPD in this volume). They would also need to reconsider litigation procedures in deprivation of legal capacity and guardianship courts which at present frequently involve a litigation guardian who may base their representation on their view of the person’s best interests rather than their ‘will and preferences’.252
6.4 The Safeguards Shall Be Proportional to the Degree to which Such Measures Affect the Person’s Rights and Interests At present, when most countries provide for deprivation of legal capacity or guardianship in some form, safeguards for such measures typically include the aforementioned court or administrative procedures for the appointment or review of guardians. Many countries also place monitoring requirements upon guardians, requiring them to submit reports about how they are managing the person’s affairs to government officials such as a public guardian or public advocate. The frequency of such reviews and monitoring procedures is usually variable, depending upon whether it is considered likely that the person’s circumstances will change and the track record of the guardian in managing the person’s affairs. Court review and monitoring procedures are resource intensive. Often the cost is borne by the person themselves, and they can be experienced as an intrusion on the privacy of the individual and those supporting them. Although vital in many cases for protecting the individual from exploitation and abuse, they also carry risks of over-regulating the lives of those relying support for the exercise of legal capacity. In the event states parties were to move away from systems of guardianship towards the kinds of supports described here, it is likely that resource intensive review procedures such as these would be reserved for frameworks like facilitated decision-making, which carry greater risks of abuse. Of those states that have introduced statutory frameworks for supported decision- making, most have preferred to take a lighter touch approach, in recognition that the person enjoys a higher level of autonomy. In British Columbia, for example, some Martin and others (n 38). UN HRCtee, ‘General Comment No 32 Article 14: Right to equality before courts and tribunals and to a fair trial’ UN Doc CCPR/C/GC/32 (23 August 2007). 251 For a review of fair trial guarantees under the ECHR, see Dovydas Vitkauskas and Grigoriy Dikov, Protecting the Right to a Fair Trial under the European Convention on Human Rights (Council of Europe 2012). 252 Lucy Series (n 73). 249 250
series and nilsson
Article 12 CRPD
373
agreements relating to support and representation need not be officially registered, but a person can appoint a trusted third party to monitor the activities of representative.253 In Ireland, new legislation for supported decision-making agreements does not necessarily require them to be registered, but does make provision for official investigations in response to complaints or concerns.254 These may offer more proportionate alternative safeguards for the emerging support paradigm.
7. Paragraph 5 To be in control over one’s own financial affairs is important for several reasons. It enables one to cater for his or her basic needs (food, clothes, accommodation, etc) and to realize one’s life projects. With financial means one can choose what to eat and wear, and where and with whom to live. One can pursue an education, spoil loved ones, or simply go to the movies. Many of us take these things for granted, but millions of persons with disabilities, in particular persons with intellectual and psychosocial disabilities255 are routinely denied control over their financial affairs.256 To address such injustices, the CRPD asserts that persons with disabilities are equally entitled to acquire, own, enjoy, and dispose private property, and obliges states parties to take all appropriate action to ensure these rights in the domestic context. Moreover, states parties must ensure that persons with disabilities have equal access to bank loans and other forms of financial credit. In this part of the analysis of article 12, we will explore what this demand for equal treatment means in light of the preparatory works, available jurisprudence and other sources concerning the proper interpretation of the CRPD.257
7.1 Background and Travaux Préparatoires The right to equal enjoyment of property rights was included in the first compilation of proposals for a treaty on the rights of persons with disabilities produced by the Working Group of the Ad Hoc Committee in January 2004.258 It is easy to see that this early draft of what later became article 12(5) is almost identical to the final version of the treaty text. In the discussions that followed the first draft, the primary point of controversy concerned the distinction between the right to own property and the right to administer that property,259 and the proper scope of the right to administer property and control one’s Representation Agreement Act 1996, British Columbia. Assisted Decision-Making (Capacity) Act 2015. 255 In this analysis of Art 12(5) CRPD, this author uses the term ‘psychosocial’ instead of ‘mental’ (the CRPD’s term) when discussing persons experiencing long-term mental health problems. ‘Psychosocial’ is the term preferred by persons belonging to this group, and it is increasingly recognized by human rights practitioners and scholars as the proper term to use. See eg the CRPD Committee, ‘General Comment No 1 on Art 12: Legal Capacity’ UN Doc CRPD/GC/1 (11 April 2014) paras 9, 15, and 42. 256 Dinesh Bhugra et al, ‘Right to Property, Inheritance, and Contract and Persons with Mental Illness’ (2016) 28 Int’l Rev Psychiatry 402. See also Nora Ellen Groce, Jillian London, and Michael Ashley Stein, ‘Inheritance, Poverty and Disability’ (2014) 29 Disability and Society 1554. 257 Arts 31–32 VCLT. 258 ‘Draft Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’, Annex 1 to the Report of the Working Group to the Ad Hoc Committee UN Doc A/AC265/2004/WG 1 (16 January 2004) article 9 (e) and (f ). 259 ‘Daily Summaries of the Fifth Session of the Ad Hoc Committee related to article 9 Equal Recognition as a Person Before the Law (25 January 2005)’, see recorded statements by Argentina, Australia, Canada, Chile, Jordan and the Russian Federation, available at: . 253 254
series and nilsson
374
Equal Recognition before the Law
financial affairs. A number of delegates argued that certain intellectual and psychosocial conditions can have a fundamental impact on personal decision-making skills, which warranted restrictions on the right to manage one’s financial affairs.260 Others argued against such restrictions, with representatives from civil society taking the lead. Variations in cognitive skills ought not to affect the right of persons with disabilities to make financial decisions. If people experienced difficulties when making decisions, then such challenges could—and should—be met with voluntary support.261 This controversy mirrors the general discussion that took place before the Ad Hoc Committee about whether the CRPD should reaffirm that persons with disabilities are not only persons before the law (with rights and duties) but entitled to legal agency (entitled to make legally binding decisions) and whether such legal agency may legitimately be circumscribed under certain circumstances.262 The negotiating parties managed to reach agreement by framing the right to legal agency as an entitlement to be enjoyed ‘on an equal basis with others’, and by remaining silent on whether it may be circumscribed.263 The precise implications of this compromise is still a matter of legal argumentation and part of an ongoing dialogue between the states parties and the CRPD Committee, and between other stakeholders.264
7.2 The Equal Right to Own and Inherit Property The right to own and inherit property is well-established in international human rights law. It is recognized by the UDHR265 and protected under several regional human rights treaties.266 These treaties prohibit arbitrary deprivation of private property. The CERD and CEDAW complement these provisions by specifying that states must ensure that everyone enjoys protection of their property, regardless of race, colour, national or ethnic origin,267 sex, or marital status.268 Article 12(5) CRPD adds to these qualifications (and standards) by clarifying that property rights effectively extend to persons with disabilities. The CRPD does not define what constitutes ‘property’ and neither does any other international human rights treaty. A working definition of the term can, however, be gleaned from UN declarations and jurisprudence stemming from human rights courts and tribunals. According to a UN General Assembly resolution, the right to property covers ‘personal property, including the residence of one’s self and family’ and ‘economically productive property, including property associated with agriculture, commerce and industry’.269 The European Court of Human Rights has given the term ‘possessions’ (which ‘Daily Summaries 25 January 2005’ (n 259) see statements by Syria, Libya, and Norway. ‘Daily Summaries of the Seventh Session of the Ad Hoc Committee related to article 12 Equal Recognition as a Person Before the Law (18 January 2006)’, see statements by International Disability Caucus (IDC), Inclusion International and Mental Disability Rights International, available at: . 262 For a more comprehensive analysis of this discussion the reader is directed to the general travaux section of Art 12 earlier in this chapter. 263 ibid. 264 The CRPD Committee has expressed its interpretation in its General Comment No 1 (n 254) and some states parties have expressed their views in the form of interpretative declarations (eg Australia, Canada, Estonia, the Netherlands, Norway, and Poland) and in response to the CRPD Committee’s outputs. 265 Art 17 UDHR. 266 Art 14 African Charter on Human and Peoples’ Rights (ACHPR); Art 21 American Convention on Human Rights (ACHR); Art 31 Arab Charter on Human Rights; and Art 1 Optional Protocol 1 to the Convention for the Protection of Human Rights and Fundamental Freedoms. 267 268 Art 5(d)(v) CERD. Art 16(1)(h) CEDAW. 269 UNGA Res 45/98 (14 December 1990) para 3. 260 261
series and nilsson
Article 12 CRPD
375
is the term for property used in the European Convention of Human Rights (ECHR) an even broader meaning.270 It includes land,271 physical goods,272 shares of stock,273 business licenses,274 intellectual property (eg copyright and patents)275 and, under certain circumstances, welfare benefits (including disability-related ones).276 The Inter-American Court of Human Rights has interpreted ‘property’ in a similarly comprehensive sense.277 Property rights are qualified rights in the sense that they may be limited by domestic legislation if certain criteria are met. Article 12(5) CRPD prohibits arbitrary deprivation of property, implying that non-arbitrary depravation of property can be permissible. The Convention does not, however, provide any further details on what constitutes arbitrary interferences with property rights. The ECHR is more elaborate on this point; it states that no one shall be deprived of his (or her) possessions ‘except in the public interest and subject to the conditions provided for by law and by the general principles of international law’.278 It continues to clarify that states are permitted to maintain legislation that is necessary to ensure payment of taxes and penalties.279 The European Court of Human Rights has interpreted this provision to include a requirement of proportionality between the aim(s) behind a restriction on the enjoyment of property and its consequences for those affected by the restriction.280 The absence of such specifications in the CRPD is understandable in view of the purpose of the Convention, which is to ensure the equal enjoyment of human rights by persons with disabilities, rather than to delineate the scope and content of these rights in other respects.281 Moreover, the CRPD’s clear intent is not to create any new rights but instead relies to existing rights and definitions, albeit within a disability context.282 To determine whether a particular obstacle to the enjoyment of property violates the CRPD one must consider whether non-disabled persons, in a relevantly similar situation, are subjected to the same constraints. Imagine a domestic statute prescribing that persons who inherit money or property must pay a tax on their inheritance. Contrast this example with a statute that prescribes that daughters are entitled to one-half of a son’s share when inheriting their parents, or a domestic practice that excludes persons with disabilities from inheriting land. Whilst all examples involve restrictions on the right to inherit property, the latter two are objectionable in the sense that the first one is not. The last example meets the definition of disability-based discrimination and violates the CRPD, unless one can demonstrate that the practice serves a legitimate aim, is based on objective
eg Beyeler v Italy (2000) 33 EHRR 52 para 100. Belvedere Alberghiera Sr1 v Italy App no 31524/96, ECHR 2000-VI, paras 51–52. 272 Beyeler v Italy (n 270). 273 Lithgow and others v the United Kingdom (1986) 8 EHRR 329 para 107. 274 Tre Traktörer Aktiebolag v Sweden (1989) 13 EHRR 309 para 53. 275 Anheuser-Busch Inc. v Portugal (2007) 44 EHRR 42 para 72. 276 Béláné Nagy. Hungary App no 53080/13 (13 December 2016) para 82–89. 277 In a case concerning expropriation of land, the Inter-American Court of Human Rights held that the right to property under the American Convention on Human Rights covers ‘all movables and immovables, and all tangible and intangible assets, as well as any other property susceptible of having value’: Salvador Chiriboga v Ecuador (Preliminary Objection and Merits) Series C No 179 (6 May 2008) para 55. 278 Art 1 Protocol 1 to the ECHR; the ACHPR Art 14 and the ACHR Art 21 embody similar clarifications on the scope of the right to property. 279 280 Art 1 Protocol 1 to the ECHR. See eg Béláné Nagy v Hungary (n 75) para 115. 281 Art 1 CRPD. 282 Rosemary Kayess and Phillip French, ‘Out of Darkness into Light? Introducing the Convention on the Rights of Persons with Disabilities’ (2008) 8 HRLR 1 20. 270 271
series and nilsson
376
Equal Recognition before the Law
criteria and is reasonable.283 As described by Groce, London, and Stein, inheritance is a critical means of transferring wealth and means to subsistence (eg a plot of land or a sewing machine) between generations; it can provide younger generations with economic independence and help movement out of poverty.284 Such transfers can, however, also give rise to a number of legitimate concerns: Will the inheritor be able to manage the inherited assets? Does he or she need protection to prevent exploitation by third parties?285 The Convention answers such concerns by obliging states to provide protection against exploitation and abuse (article 16) and to ensure access to decision-making support (article 12(3)). Whilst such measures may involve restrictions of the inheritor’s legal agency (we attend to this question in the following section), a categorical exclusion of persons with disabilities as potential inheritors cannot be justified under the CRPD or any other source of human rights law. In addition to ensuring that domestic legislation accords with article 12(5), states parties must combat discriminatory practices between private actors.286 Though we lack systematic studies on the subject, researchers on poverty are routinely apprised of anecdotal stories about how persons with disabilities are passed over when land and other family assets are transferred from one generation to the next.287 In this context, the situation of women with disabilities deserves particular attention. Patriarchal systems persist in several states parties restricting women’s access to land and family assets.288 In such settings, women with disabilities face discriminatory practices because of their gender and impairment.
7.3 The Equal Right to Control One’s Financial Affairs A key facet of the right to property is the right to use one’s assets. The right to own or inherit money would lose much of its value if the owner was prevented from using the money to, for example, buy something or take the bus to see a friend. As noted above, much of the discussions during the negotiations of the CRPD concerned the proper scope of the right to control one’s financial affairs. The treaty text delineates this scope by reaffirming that persons with disabilities enjoy an ‘equal right’ to control their finances. The precise implications of this obligation are still matters of debate. The CRPD Committee has held that the Convention permits restrictions on legal agency on the basis of bankruptcy or conviction of a criminal offence.289 Restrictions cannot, however, be based on personal traits such as gender, race, or disability.290 Few, if any, would dispute 283 The idea that not all state action that can be subsumed under the definition of discrimination violates the prohibition of discrimination is well established in international human rights law; see eg Jarlath Clifford, ‘Equality’ in Dinah Shelton (ed), The Oxford Handbook on International Human Rights Law (OUP 2013) 438. 284 Groce, London, and Stein ‘Inheritance, Poverty and Disability’ (n 256) 1557. 285 ibid 1564. 286 Arts 4 and 12(5) CRPD. In its concluding observations, the CRPD Committee has expressed its concern over domestic laws and practices that limit persons with disabilities’ possibilities to own and inherit property. See eg ‘Concluding Observations on the Initial Report of Kenya’ UN Doc CRPD/C/KEN/CO/1 (28 August 2015) para 22, and ‘Concluding Observations on the Initial Report of Uganda’ UN Doc CRPD/C/UGA/CO/ 1 (18 April 2016) para 22. 287 Groce, London, and Stein ‘Inheritance, Poverty and Disability’ (n 256) 1555–56. 288 ibid 1558f. See also CRPD Committee, ‘General Comment No 3 on Women and Girls with Disabilities’ UN Doc CRPD/GC/3 (26 August 2016) para 51. 289 CRPD Committee, General Comment No 1 para 32. As noted by Minkowitz restricting rights on these grounds may, under certain circumstances, violate other human rights treaties. See Tina Minkowitz, ‘CRPD and Transformative Equality’ (2017) 13 Int’l J Law Context 77, 83. 290 CRPD Committee, General Comment No 1 paras 9 and 32.
series and nilsson
Article 12 CRPD
377
that the presence of a certain ethnicity, gender or physical impairment is an insufficient— and in many cases irrelevant—reason to circumscribe a person’s right to manage their property. The difficult question is whether the CRPD also prohibits restrictions on the right to administer property that are based on reasons linked to disability and/or impairment. Some persons with cognitive impairments, for example, have difficulties in understanding basic financial concepts (such as quantity, numbers, and money) and as a group, persons with intellectual disabilities experience more difficulties than ‘the average person’ to understand and contemplate about financial choices.291 Moreover, persons with certain psychosocial conditions can make very poor financial decisions during their active phases and perform on par with others during their inactive phases.292 For these reasons, states have a legitimate interest to prevent financial harms that affect persons with certain disabilities in particular. Such protective measures can take many forms and target different actors. states may, for example, strengthen consumer protection and prohibit certain sales methods or forms of marketing, or develop procedures by which harmful contracts can be cancelled if certain criteria are met.293 Article 12(3) obliges states to ensure access to support. The typical response to the financial risks discussed here is, however, still some form of guardianship system where guardians are mandated to make financial decisions on behalf of the person concerned. Two main guardianship models are common practice: plenary and partial guardianship.294 Persons under plenary guardianship typically lose all or almost all of their capacity to manage their financial affairs. The involvement of a third party—a guardian—is necessary to make legally effective decisions on financial matters. Under partial guardianship the individual retains capacity to make certain financial decisions, typically the capacity to make smaller everyday transactions. The power to make other decisions is transferred to the guardian. Although partial guardianship is less intrusive on the individual’s freedom control her assets, such systems tend to ‘spill over’ into other areas.295 Guardianship systems are problematic for several reasons: they severely restrict individuals’ possibilities to enjoy their assets, they prevent financial risk-taking thereby also the possibility to make mistakes and learn from them, they expose persons with disabilities to economic exploitation by unscrupulous guardians, and they reinforce stereotypical images of persons with disabilities as unable to manage their finances.296 The 291 See eg Paul Willner, Rebecka Baily, Rhonwen Perry, and Simon Dymond, ‘Evaluation of the Ability of People with Intellectual Disabilities to “Weigh Up” Information in Two Tests of Financial Reasoning’ (2010) 54 J Intellectual Disability Research 380. 292 Christopher P Guzelian, Michael Ashley Stein, and Hagop S Akiskal ‘Credit Scores, Lending, and Psychosocial Disability’ (2015) 95 B U Law Rev 1807, 1824. 293 Many states parties have consumer and marketing legislation prohibiting misleading advertising, aggressive commercial practices, and unfair contract terms, eg EU member states are obliged to prohibit such practices according to the Directive 2005/29/EC of the European Parliament and of the Council concerning unfair business-to-consumer commercial practices in the internal market (2005) OJ L149/23 articles 5–9. 294 CRPD Committee, General Comment No 1 (n 254) para 27. 295 Guzelian, Stein, and Akiskal, ‘Credit Scores’ (n 291) 1859. See also Council of Europe Commissioner for Human Rights, ‘Who Gets to Decide? Right to Legal Capacity for Persons with Intellectual and Psychosocial Disabilities’ (Council of Europe Publisher 2012) 14. 296 Ground-breaking reports on the, at times, devastating effects of guardianship on persons with disabilities’ lives have been published by Mental Disability Advocacy Center (MDAC), now Validity; see eg its reports ‘Guardianship and Human Rights in Serbia’ (2006), Russia (2007), Kyrgyzstan (2007), Hungary (2007), the Czech Republic (2007), and Bulgaria (2007); more recent reports illustrate that problems persists—see ‘Legal Capacity in Europe: A Call to Action to Governments and to the EU’ (2013): All reports are available at under ‘Resources’.
series and nilsson
378
Equal Recognition before the Law
CRPD Committee interprets the CRPD to prohibit all forms of guardianship and substituted decision-making297 that involves overriding an individual’s expressed preference. According to the Committee, neither variations in decision-making skills nor risks for financial harm can justify transfer of decision-making power from the person concerned to a third party.298 Most, if not all, states parties take the opposite position and interpret the Convention to permit substituted decision-making under certain circumstances, including at the very least in situations where decision-making ability is lacking and voluntary support is insufficient to prevent actions that entail serious negative consequences for the person concerned.299 In the end, the lawfulness of financial guardianship regimes hinges on discrimination analysis. Regimes that aim to target persons with disabilities only as well as regimes which cover a larger group of people but have a disparate impact on persons with disabilities meet the definition of discrimination.300 To comply with the CRPD such regimes must serve legitimate aims and be justified as objective and reasonable.301 This means that they must pursue aims that are compatible with the object, purpose and provisions of the CRPD, that they must contribute to their aims, and that the negative consequences brought about by them must be reasonable.302 This weeds out regimes that do not actually provide protection against the financial harms they are set up to prevent. It further disqualifies systems that are over-protective in the sense that they provide for substituted decision-making in situations where the same level of protection can be achieved by voluntary support. The development of support mechanisms to aid people in their decision- making has just begun and there are good reasons to be optimistic about the future. There is a growing body of literature demonstrating that personal support and assistive technology can prevent financial harm just as effectively as substituted decision-making in many situations.303 Having said that, it remains uncertain whether various forms of support and assistive devices can cater for the needs of the entire group of people who are today subjected to some form of substituted decision-making.304 The hard cases involve situations where persons want to make transactions that will impoverish them, or take risks that are likely to lead to such results. It also includes situations where the will of the person concerned cannot be ascertained, either because we fail to understand the person’s unique way of communication or because his or her preferences appear conflicting. The 297 Substituted decision-making is a term that is commonly used by the CRPD Committee (and scholars) to refer to systems where legal capacity is removed from the person concerned without his or her consent, and vested in a third party—see CRPD Committee, General Comment No 1 (n 254) para 27. 298 299 CRPD Committee, General Comment No 1 (n 254) paras 13–15. See n 263. 300 Art 2 CRPD: The definition of discrimination covers all systems that aim to make distinctions on the basis of disability/impairment and to restrict the rights of persons with disabilities (often referred to as direct discrimination) as well as systems that serve other aims but which have a negative impact on persons with disabilities’ enjoyment of rights. 301 Anna Nilsson, ‘Objective and Reasonable? Scrutinising Compulsory Mental Health Interventions from a Non-discrimination Perspective’ (2014) 14 HRLR 459, 465–66. 302 ibid. 303 Ex pluribus Michael Bach and Lana Kerzner, A New Paradigm for Protecting Autonomy and the Right to Legal Capacity (Law Commission of Ontario 2010) 72ff; Eilionóir Flynn and Anna Arstein-Kerslake. ‘The Support Model of Legal Capacity: Fact, Fiction, or Fantasy?’ (2014) 32 Berkeley J Int’l Law 124; and Piers Gooding, Anna Arstein-Kerlanke, and Eilionóir Flynn, ‘Assistive Technology as Support for the Exercise of Legal Capacity’ (2015) 29 Int’l Rev Law, Computers & Technology 245. 304 Piers Gooding, ‘Navigating the “Flashing Amber Lights” of the Right to Legal Capacity in the United Nations Convention on the Rights of Persons with Disabilities: Responding to Major Concerns’ (2015) 15 HRLR 45, 68.
series and nilsson
Article 12 CRPD
379
person may for example want to spend her income on other things than rent but continue to live in her apartment. If such conflicts cannot be resolved by communication, states parties could respect her wish to not pay rent or vest a third party with the power to disregard that preference and ensure that the landlord is reimbursed for the rental fee. The latter protects the person from losing her apartment but intrudes on her right to legal agency. The former alternative protects her status as a legal actor but includes a risk of homelessness. Which of these alternatives we prefer depends on the values and costs we attach to the interests at stake: the value of being in charge of one’s financial affairs and the cost of having one’s choices overridden versus the value of keeping one’s apartment and the cost/risk of losing it. The Convention offers no clear-cut answer to such matters.305 To determine whether a particular domestic system is reasonable, we need to consider its effects.306 Systems with negative effects for those concerned are unreasonable unless the harms in question are compensated by positive outcomes. There is compelling evidence that systems of guardianship have led to unfathomable human rights abuses.307 They have stripped persons with disabilities of their assets and transferred them to dishonest third parties.308 And they have enabled paternalistic guardians to prevent members of this group from pursing their life projects. Having said that, not all forms of substituted decision- making are equally intrusive on individuals’ capacity to manage their affairs, nor do they have equally severe implications on other spheres of life. Many states parties provide for financial guardianship, which can be limited to certain types of decisions or specified parts of the individual’s assets (eg to selling real estate or spending a particular inheritance).309 Moreover, the quality of domestic services and of the safeguards in place to prevent abuses varies across jurisdictions. The same can be said about people’s experiences of substituted decision-making.310 Thus, the precise promise and perils of a particular system depends on ‘how much’ it interferes with the individuals’ rights and on ‘how much’ protection it offers when compared to other less restrictive ways to prevent financial harm. Preventive measures can take many forms and affect different actors. states could, for example, prohibit certain forms of marketing that encourages overspending, provide for a system of so-called advanced directives (where individuals set limits for their own spending), or set up systems that allow individuals to cancel harmful contracts under certain conditions. To guide reasoning about reasonableness, it can be instructive to ask: ‘would it be reasonable to subject persons without disabilities in similar situations to the same restrictions of legal agency?’ A state policy may seem reasonable when viewed in isolation. Drawing on the example provided above, it may seem reasonable to prevent persons with
305 Whilst Art 12(5) and 3(a) speak in favour of honouring personal choices, states parties also have an obligation to support independent living and inclusion in society (Art 19 and 3(c)). 306 307 Nilsson, ‘Objective and Reasonable?’ (n 300) 467f. See (n 296). 308 Cases brought before the European Court of Human Rights provide illustrative examples. See eg Shtukaturov v Russia, App no 44009/05 (27 March 2008), and Stanev v Bulgaria, App no 36760/06 (17 January 2012). 309 European Union Agency for Fundamental Rights (FRA), ‘Legal Capacity of Persons with Intellectual Disabilities and Persons with Mental Health Problems’ (2013). At page 31 the report highlights the Dutch system of ‘protective trust’ (bewindvoering) and the Swedish system of ‘trustee’ (förvaltare), both aimed at protecting the property and financial interests of persons in need of assistance to this end. 310 ibid 44. The report includes interviews with persons who had been subjected to guardianship. Their responses ranged from considering guardianship to be ‘the worst thing I could imagine’ to being a good thing, because ‘we can discuss everything together, and then we can achieve what we want with a common agreement’.
series and nilsson
380
Equal Recognition before the Law
intellectual disabilities from spending their income in a way that jeopardises their place of residence. The great value we attach to having a place to live, and the negative effects associated with homelessness could undergird such a claim. It is, however, also possible to argue for the opposite, and say that it is more important to provide people with the opportunity to shape their lives why we should respect financial choices also in situations where such decisions have negative implications for the person concerned.311 Even if both positions were to be compatible with the CRPD, which would imply that states have discretion on this matter, it seems wrong to allow states to deny persons with disabilities the right to manage their financial affairs based on the first claim, and, at the same time, accept that states refrain from imposing similar restrictions on persons without disabilities because of the second claim. Presumably, the prohibition of discrimination requires states parties to work out a consistent ‘disability-neutral’ approach to financial risk-taking.312 In addition, we need to be mindful of the specific harms that domestic practices meeting the definition of discrimination can cause to those concerned. This includes disrespect for human dignity, stereotyping, prejudice, and social disadvantage.313 The treaty text of the CRPD confirms the relevance of these factors. The preamble to the treaty explains that disability-based discrimination disrespects ‘the inherent dignity and worth of the human person’ and affirms states parties’ belief that the treaty, which has equality and non-discrimination as its core value, will ‘make a significant contribution to redressing the profound social disadvantage’ experienced by persons with disabilities.314 Just like the CERD and the CEDAW, the CRPD includes specific obligations for states parties by which to combat public prejudice and discrimination from private actors.315 The degree to which a particular regime interfere with the dignity of those concerned and contribute to the spread of public prejudice and stereotypic beliefs of persons with disabilities depends on its legal design as well as on other factors. Domestic practices that target persons with disabilities, in particular, reinforce stereotypical images of persons with disabilities as being unable to take on such tasks. Such regimes arguably interfere more with the dignity of members of this group than do regimes that are addressed towards a larger class of people who, under certain circumstances, are in need of protection against financial harms. To determine the reasonableness of a specific regime, all relevant negative effects must be balanced against the positive outcomes of that regime.
7.4 Equal Access to Bank Loans, Mortgages, and Financial Credit The credit market is another area where persons with disabilities encounter various barriers. Physical barriers obstructing access to bank offices, cash machines, and Internet banking are covered by article 9 CRPD.316 Article 12(5) focuses on access to bank loans 311 Flynn and Arstein-Kerslake argue that persons who are engaging in self-harming behaviour and express a wish to stay in the harmful situation deserves to have their will and preference respected. Eilionóir Flynn and Anna Arstein-Kerslake, ‘Legislating Personhood: Realising the Right to Support in Exercising Legal Capacity’ (2014) 10 Int’l J Law Context 81, 99. 312 I have developed this argument in previous writings—see Anna Nilsson, Minding Equality: Compulsory Mental Health Interventions and the CRPD (PhD Thesis, Lund University 2017) 159ff. 313 Different scholars sometimes use slightly different terminology when discussing these phenomena. Sandra Fredman provides a good overview of the debate in her article ‘Substantive Equality Revisited’ (2016) 14 ICON 712, 727. 314 CRPD Preamble (h) and (y). 315 Art 4(1)(e) CRPD and Art 8(1)(b), CEDAW, Arts 2(e) and 5, and CERD, Arts 2(1)(d), 4, and 7. 316 CRPD Committee, Szilvia Nyusti and Péter Takács, Communication No 1/2010, 16 April 2013 para 9.2.
series and nilsson
Article 12 CRPD
381
and other forms of credit, including small loans (microloans) to impoverished borrowers who lack access to other forms of credit.317 Empirical research has identified several factors that can obstruct equal access to loans. The credit market is a complex market and it can be difficult to access information about the different credit options available and to evaluate them. A study from Australia suggests that persons with intellectual disabilities fare particularly poorly and—many times—feel that they have little choice but to enter into a contract they do not understand.318 Other studies illustrate the problems encountered by persons with visual impairments.319 States parties to the CRPD must address such problems by requiring banks to adjust their services to the extent that is reasonable.320 For example, banks need to provide information about their services in Braille, easy-to-read and other accessible formats and offer personal service to customers who needs such services. Moreover, studies indicate that credit applications from persons with disabilities are at times rejected without individual assessments by financial staff viewing persons with disabilities as economically non-productive and vulnerable to financial exploitation.321 Women with disabilities are particularly exposed in this respect.322 Such practices will often qualify as discrimination and states parties must take appropriate action to eliminate such misconducts.323 A more complex challenge to achieve equal access to financial credit relates to the fact that certain impairments raise the risk for reckless spending and accumulating debt. Banks (and other creditors) recognize this risk and either reject loan applications from persons with certain disabilities or adjust the terms of the loans accordingly. In discussing the US context, Guzelian et al have outlined a number of ways to mitigate this problem. Financial guardianship is one option. Advance directives and surety (ie a public or private actor who commits to cover the debt in case the borrower fails to repay the debt) are yet other possible alternatives.324 Each of these alternatives has implications on the individual’s possibilities to manage her financial affairs and they generate different levels of financial security for the creditor. As discussed above, guardianship severely restricts the individual’s possibilities to decide on financial matters, and even if the presence of a guardian may convince a bank to accept a loan application, the guardian remains in charge of the new funds and decides how the funds or assets may be spent. In so-called advance directives, the individual creates self-imposed limits on her spending with the aim of increasing her ability to repay the credit on time.325 An advantage with such a system is that the individual remains in control over her financial affairs. How much security advance directives generate for creditors depends on the domestic context. What happens if the individual departs from the directive and stops repaying the creditor? 317 Microloans and microfinancing are typically designed to support entrepreneurship and thereby alleviate poverty. 318 Susan Hayes and Fiona Martin, ‘Consumers with an Intellectual Disability and Carers: Perceptions of Interactions with Banks’ (2007) 11 J Intellectual Disabilities 9, 9–10. 319 eg Ephraim L Nuwagaba and Peter N Rule, ‘An Adult Learning Perspective on Disability and Microfinance: The Case of Katureebe’ (2016) 5 Afr J Disability. 320 The prohibition of disability-based discrimination includes an obligation to take reasonable accommodation, Art 2 CRPD. 321 See eg Marc Labie, Pierre-Guillaume Méon, Roy Mersland, and Ariane Szafarz, ‘Discrimination by Microcredit Officers: Theory and Evidence on Disability in Uganda’ (2015) 58 Q Rev Econ Finance 44. 322 Theeraphong Bualar, ‘Physically Disabled Women’s Creditworthiness in Village Development Fund: Evidence from Thailand’ (2011) 21 Dev Pract 848. 323 324 Art 4(1)(e) CRPD. Guzelian, Stein, and Akiskal ‘Credit Scores’ (n 292) 1858ff. 325 ibid 1859–62.
series and nilsson
382
Equal Recognition before the Law
Suretyship means that a third party acts as a guarantor. Such arrangements can theoretically be designed to intrude very little on the borrower’s legal agency and, at the same time, satisfy the creditors’ interest of financial security. In practice, it will, however, be difficult for many persons with disabilities to find sureties willing to pledge for them under such circumstances. Whether any of the alternatives discussed here are sufficient to ensure equal access in a domestic context can only be determined by discrimination analysis as outlined in the previous section.
series and nilsson
Article 13 Access to Justice . States Parties shall ensure effective access 1 to justice for persons with disabilities on an equal basis with others, including through the provision of procedural and age-appropriate accommodations, in order to facilitate their effective role as direct and indirect participants, including as witnesses, in all legal
proceedings, including at investigative and other preliminary stages. . In order to help to ensure effective access 2 to justice for persons with disabilities, States Parties shall promote appropriate training for those working in the field of administration of justice, including police and prison staff.
1. Introduction 2. Background and Travaux Préparatoires 3. Paragraph 1 3.1 ‘Effective’ Access to Justice 3.2 ‘On an equal basis’ 3.3 ‘Procedural and age-appropriate accommodations’ 3.4 Direct and Indirect Participants, Including as Witnesses 3.5 All Legal Proceedings, Including at Preliminary Stages 4. Paragraph 2
383 384 390 390 391 393 396 398 400
1. Introduction The concept of access to justice is one that has attracted significant attention in international human rights law in recent years. People with disabilities represent one of the marginalized communities who have long sought access to justice in order to remedy violations of their human rights. It is fitting therefore, that article 13 CRPD represents the first expression of a stand-alone right to access justice in international human rights law. The drafters of the CRPD were under a mandate not to create any new rights, but rather to restate the application of existing universal human rights to the lived experience of people with disabilities. Here we explore how the drafters drew on concepts like the right to an effective remedy and the right to a fair hearing in other UN human rights treaties, to develop a unique treaty provision on access to justice for persons with disabilities in the CRPD. We will further consider how this right has been interpreted by the UN Committee on the Rights of Persons with Disabilities (CRPD Committee) in its Concluding Observations to date, in its General Comments on article 9 (accessibility) and article 12 (equal recognition before the law) and Guidelines on article 14 (liberty and security)—each of which have clear links to the right to access justice in article 13. Further, we will explore the extent to which article 13 CRPD has been interpreted and applied in domestic and regional courts. Finally, we shall highlight individual complaints made under the Optional flynn
384
Access to Justice
Protocol concerning the interpretation of article 13 CRPD and any references to this provision by other treaty bodies and independent mechanisms within the UN system, with a view to considering how the Committee’s jurisprudence on this subject might develop in the future.
2. Background and Travaux Préparatoires The scope of the right to access justice is potentially very broad. While a narrow interpretation might only refer to ‘justice’ claims pursued through the formal legal system, Lord et al consider access to justice for persons with disabilities to include ‘people’s effective access to the systems, procedures, information, and locations used in the administration of justice’.1 In the years immediately prior to the negotiation of the CRPD, increasing attention was paid to access to justice for a wide range of marginalized groups by academic scholarship and UN human rights treaty bodies. These developments should be considered as part of the context in which the stand-alone right to access justice, articulated in article 13, emerged. At a basic level, the right to access justice set out in article 13 CRPD can be viewed as an extension of the existing universal rights to an effective remedy and to a fair hearing.2 These rights were first enumerated in the Universal Declaration of Human Rights (UDHR) in 1948, and subsequently reiterated in core human rights treaties such as the International Covenant on Civil and Political Rights, and expanded on in General Comments of the Human Rights Committee and the Committee on Economic, Social and Cultural Rights. Traces of these rights, and other rights closely connected to accessing justice (such as the right to complain to an independent authority and to receive adequate redress for violation of rights) are found in all core UN human rights treaties—including the Convention on the Elimination of All Forms of Racial Discrimination (CERD),3 the Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW),4 the Convention Against Torture (CAT),5 the Convention on the Rights of the Child (CRC),6 the Convention on the Protection of the Rights of All Migrant Workers,7 and the Convention for the Protection of All Persons from Forced Disappearance.8 These references reinforce the notion that without effective access to justice, particularly at the domestic or local level where remedies are most meaningful to the individual, the strength of universal human rights is weakened, and their content devalued. The first discussion on access to justice in the CRPD emerged in the third session of the Ad Hoc Committee that drafted the Convention. It is interesting to note that in the first compilation of proposals for a Convention produced by the Working Group of the Ad Hoc Committee in January 2004,9 no stand-alone article on access to justice was 1 Janet E Lord, Katherine N Guernsey, Joelle M Balfe, Valerie L Karr, and N Flowers (eds), Human Rights Yes! Action and Advocacy on the Rights of Persons with Disabilities, (Human Rights Resource Center 2009) ch 12 para 12.1. 2 Anna Lawson and Eilionóir Flynn, ‘Disability and Access to Justice in the European Union: Implications of the UN Convention on the Rights of Persons with Disabilities’ (2013) 4 European Yearbook of Disability Law 7. 3 4 5 Arts 5(a) and 6 CERD. Arts 7, 8 and 15 CEDAW. Arts 13 and 14 CAT. 6 7 8 Art 12 CRC. Arts 18 and 83 CPRAMW. Arts 2, 8, 11, and 17 CPAPFD. 9 See Ad Hoc Committee, Working Group to draft a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, ‘Report to the Ad
flynn
Article 13
385
proposed. Nevertheless, during the development of this compilation of proposals, concepts related to access to justice, such as the right to an effective remedy,10 the right to judicial procedures for alleged rights-violations,11 and the right to judicial equality and protection,12 were discussed as important elements of any eventual Convention. In light of these discussions, a footnote was added to the working group’s report on article 4 (on General Obligations), which stated that previous versions of that article had included specific provisions on the right to an effective remedy.13 These had not been incorporated into the Working Group’s final draft due to the concern that there was insufficient consensus in international human rights law on the issue to justify including a specific article on the right to an effective remedy or access to justice.14 The footnote set out that the right to an effective remedy appeared in the Universal Declaration on Human Rights and the ICCPR but not in the ICESCR and so was not universally recognized in the three core UN human rights treaties. During the negotiations at the third session of the Ad Hoc Committee, various proposals concerning access to justice were suggested.15 In the discussions on what was then draft article 9, on equal recognition as a person before the law, Japan, supported by Costa Rica, Mexico, Botswana, and Disabled People International, suggested an additional section to ensure elimination of physical and communication barriers against persons with disabilities in judicial procedures.16 Japan also noted that persons with disabilities, especially those with mental, hearing, and visual disabilities, were often at a disadvantaged position in ordinary proceedings as they faced barriers in communication which could lead to misinterpretation and unfair decisions being reached in judgments.17 Canada proposed that this article should ensure equal treatment for persons with disabilities at all stages of court and tribunal proceedings. This proposal was welcomed by Argentina, the
Hoc Committee’ Annex I (16 January 2004), available at: . 10 Proposed in Art 5, ‘Obligations in relation to remedies, Letter dated 7 October 2005 from the Chairman to all members of the Ad Hoc Committee on a comprehensive and integral international Convention to promote and protect the rights and dignity of persons with disabilities’ UN Doc A/AC265/2006/1 (14 October 2005). 11 Ad Hoc Committee, ‘Compilation of Proposals for Elements of a Convention’ (15 January 2004) 86, available at: . This document is comprised of the Compilation of proposals for a Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities UN Doc A/AC265/2003/CRP/13 (2003) and the NGO contributions to the elements of a convention UN Doc A/AC265/2003/CRP 13/Add 1 (2003). 12 ibid Compilation of Proposals 101. 13 See Ad Hoc Committee, Working Group to draft a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, ‘Report to the Ad Hoc Committee, Annex I’ (16 January 2004), available at: at fn 18. 14 ibid. 15 Ad Hoc Committee, ‘Daily summary of discussions related to International Cooperation (3 June 2004), available at: . 16 Japan proposed that states parties should ‘take appropriate and effective measures to eliminate physical and communication barriers and to reduce understanding difficulty of PWD in order to exercise all the rights in judicial procedure which are provided in the International Covenant on Civil and Political Rights.’ In Ad Hoc Committee, ‘Daily summary of discussions related to Article 9 Equal Recognition as a Person Before the Law’ (26 May 2004), available at: . 17 Ad Hoc Committee, ‘Daily summary of discussions related to Article 9 Equal Recognition as a Person Before the Law’ (26 May 2004), available at: .
flynn
386
Access to Justice
European Union, Costa Rica, and India.18 The UN Economic and Social Commission for Asia and the Pacific (ESCAP) noticed that there was no specific provision for remedies in the draft Convention text and suggested,19 together with Costa Rica,20 an additional text to ensure an effective remedy. The International Labour Organization specifically suggested the provision of assistance to persons with disability to exercise their legal capacity in accessing justice, including access to effective dispute prevention and settlement systems, as well as legal aid.21 Equally, during the third session, the Asia-Pacific Forum of National Human Rights Institutions suggested adding the following paragraphs to the draft of article 4 on General Obligations in the Working Group text: Each State Party to this Convention undertakes: (a) To ensure that any person or class of persons whose rights or freedoms recognized in the Convention are violated shall have an effective remedy, whether the violation has been committed by persons or entities acting in an official capacity or by private persons or entities; (b) To ensure that any person claiming such a remedy shall have his or her right thereto determined by competent judicial, administrative or legislative authorities, or by any other competent authority provided for by the legal system of the State, . . . as well as the right to seek from such tribunals just and adequate reparation or satisfaction for any damage suffered as a result of such discrimination; and (c) To ensure that the competent authorities shall enforce such remedies when granted. States Parties recognize that access to effective remedies may require the provision of free legal assistance to persons with disabilities and the modification or flexible application of existing laws and practice regulating matters of procedure and evidence.22
This wording in general reflects pre-existing statements of the right to an effective remedy in international human rights law, particularly in article 8 UDHR23 and article 2(3) ICCPR24. This follows the approach of much of the drafting process for the CRPD, given 18 Canada proposed the following text ‘States parties shall recognize that, in civil matters, adults with disabilities have a legal capacity identical to that of other adults and shall accord them equal opportunities to exercise that capacity. In particular, they shall recognize that adults with disabilities have equal rights to conclude contracts and to administer property and shall treat them equally in all stages of procedure in courts and tribunals.’ In Ad Hoc Committee, ‘Daily summary of discussions related to Article 9 Equal Recognition as a Person Before the Law’ (26 May 2004), available at: . 19 The UN Economic and Social Commission for the Asia and the Pacific (ESCAP) suggested to use the text of the right to an effective remedy from the Bangkok Draft ‘States parties recognize that access to effective remedies may require the provision of free legal assistance to PWD and the modification or flexible application of existing laws and practice regulating matters of procedure and evidence.’ In ibid. 20 Costa Rica proposed that states parties should ‘take necessary measures to ensure everyone whose rights and freedoms as recognized in this Convention are violated should have an effective remedy before a national authority, notwithstanding that the violation has been committed in an official capacity’, in ibid. 21 Ad Hoc Committee, ‘Article 13— Status of Discussions— Third Session: Comments, proposals and amendments submitted electronically’, available at: . 22 See United Nations Enable, ‘NGO Comments on the draft text—Draft Article 4, Proposal by Asia Pacific Forum of National Human Rights Institutions’ (25 May 2004), available at: . 23 Art 8 states that ‘[e]veryone has the right to an effective remedy by the competent national tribunals for acts violating the fundamental rights granted him by the constitution or by law’. 24 Art 2(3) states that ‘Each state party to the present Covenant undertakes: (a) To ensure that any person whose rights or freedoms as herein recognized are violated shall have an effective remedy, notwithstanding that the violation has been committed by persons acting in an official capacity; (b) To ensure that any person claiming such a remedy shall have his right thereto determined by competent judicial, administrative or legislative authorities, or by any other competent authority provided for by the legal system of the State, and to develop the possibilities of judicial remedy; (c) To ensure that the competent authorities shall enforce such remedies when granted.’
flynn
Article 13
387
that the mandate of the Ad Hoc Committee was not to create any new rights but merely to restate the application of existing human rights norms to people with disabilities.25 However, the suggested amendment also contains some elements which appear to go beyond pre-existing human rights norms. These ‘new’ additions include the recognition of the need for legal aid in order to access justice, the need for the flexibility in existing laws of procedure and evidence to accommodate disabled witnesses and defendants, and the reaffirmation of a positive obligation on the State and public bodies to enforce such remedies. Also in the third session,26 Chile proposed in response to the Working Group text that there should be a separate article on access to justice in the CRPD, as follows: ‘States Parties must guarantee adequate access to law for persons with disabilities to facilitate their ability to address justice in judicial proceedings that could be contentious or not.’27 Chile suggested that, in order to guarantee this right, states should train judges and court staff on the rights of persons with disabilities. At the fourth session, the Ad Hoc Committee considered access to justice issues as part of the revised proposals for the then draft article 9 on equal recognition before the law (which later became article 12).28 The relevant part of that draft article stated: States Parties shall: . . . • ensure that persons with disabilities who experience difficulty in asserting their rights, in understanding information, and in communicating, have access to assistance to understand information presented to them and to express their decisions, choices and preferences, as well as to enter into binding agreements or contracts, to sign documents, and act as witnesses.29
Although this text did not include any direct reference to the right to an effective remedy per se it did include key elements of what became the right to access to justice in the final text of article 13—including the need to have accessible information on rights and entitlements; the need for support with communication to assert rights; the entitlement to be recognized as competent to act as a witness in legal proceedings; and the entitlement to give legal instruction in order to pursue and enforce rights. However, as Lawson and Flynn have previously argued ‘the issue of the State’s obligation to make access to justice a reality outside the narrow confines of the legal system was not addressed in this draft’.30
25 United Nations Press Releases, ‘Chairman says draft convention sets out detailed code of implementation and spells out how individual rights should be put into practice’ (15 August 2005), SOC/4680, available at: . 26 Landmine Survivors Network, ‘Daily Summary of Discussion at Third Session of UN Convention on the Rights of Persons with Disabilities, Ad Hoc Committee’ (3 June 2004) (Landmine Survivors Network, 2004) Vol 4(8). 27 ibid. 28 United Nations, ‘Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its fourth session’, available at: . 29 See Ad Hoc Committee, ‘Working Group to draft a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, Report to the Ad Hoc Committee, Annex I Draft Article 9’ (16 January 2004), available at: . 30 Anna Lawson and Eilionóir Flynn, ‘Disability and Access to Justice in the European Union: Implications of the UN Convention on the Rights of Persons with Disabilities’ (2013) 4 European Yearbook of Disability Law 7, 23.
flynn
388
Access to Justice
During the discussions on this draft article in the fourth session, Costa Rica withdrew its own proposal to add a subparagraph on the right to an effective remedy proposed at the third session. Instead, it proposed a new article on access to justice which maintained the provision of an effective remedy and increased the aspects of flexibility, adjustment and modification of rules, procedures and practice, and availability of accommodation.31 Japan also reiterated its proposal for modifying draft article 9 as set out at the third session, but amended its wording to explicitly refer to article 14 ICCPR.32 Civil society organizations also called for a focus on access to justice in the text of the draft Convention during the fourth session. For example, the International Disability Caucus proposed a section of article 9 to ensure the equal right of persons with disabilities to participate in all stages of procedures before courts and tribunals.33 The Landmine Survivors Network proposed to insert a new paragraph in article 9 to ensure the equal treatment of persons with disabilities in all stages of procedures before courts, tribunals, and other organs in the justice system.34 People with Disabilities Australia commented that a section concerning access to justice in article 9 should clearly state the need to modify and adjust legal procedures and rules of evidence as, in practice, persons with disabilities could not enjoy equality before the law due to the inappropriate legal procedures, rules, and practices.35 Chile restated its call from the previous session for a specific and separate article on access to justice. It proposed a provision to guarantee adequate access to courts for persons with disabilities; this was to facilitate persons with disabilities’ roles as both direct and indirect participants.36 This suggestion was supported by Venezuela, New Zealand, Mexico,
31 Costa Rica proposed a new article on access to justice as follows: ‘States parties to this convention shall recognize that the full and effective enjoyment by persons with disabilities of equality before the law shall require the modification, adjustment, and flexible application of legal procedures, practice, and rules, including rules of evidence. The states parties call take immediate and effective measures to provide such accommodation which shall include: 1) provision of information in plain language and other formats accessible to persons with disabilities; 2) provision of personal assistance to understand legal procedures, practices and rules; 3) recognizing and facilitating access to alternative modes of communication and communication technology, including sign language and Braille; 4) take all necessary measures to ensure everyone whose rights and freedoms as recognized in this convention are violated shall have an effective remedy before a national authority, notwithstanding that the violation has been committed in an official capacity.’ In Ad Hoc Committee, ‘Daily summary of discussions related to Article 9 Equal Recognition as a Person before the Law’ (26 August 2004), available at: . 32 Japan proposed the following wording: ‘[States parties shall] take appropriate and effective measures to eliminate physical and communication barriers and to reduce understanding difficulty of persons with disabilities in order to exercise the rights provided in Article 14 of the International Covenant on Civil and Political Rights.’ In Ad Hoc Committee, ‘Contributions submitted by Governments in electronic format at the Fourth Session—Proposed Modifications to Draft Article 9’, available at: . 33 Ad Hoc Committee, ‘Article 13— Status of Discussions— Fourth Session: Comments, proposals and amendments submitted electronically’, available at: . 34 35 ibid. ibid. 36 Chile proposed the following wording: ‘Pursuant to the principle of equal protection before the law in the exercise of human rights, states should guarantee adequate access to courts for persons with disabilities, facilitating their effective role as direct or indirect parties to contentious and non contentious legal proceedings.’ In Ad Hoc Committee, ‘Contributions submitted by Governments in electronic format at the Fourth Session—Proposed Modifications to Draft Article 9’, available at: .
flynn
Article 13
389
and various national human rights institutions, all of which agreed that a separate article on access to justice was required.37 The revision of draft articles did not finish within the session, so no amended draft text on this subject was presented in the report of the fourth session. It was agreed, however, that the previous draft would be revisited at the fifth session.38 During the fifth session of the Ad Hoc Committee, the question of whether a separate article was needed in order to guarantee equal access to justice was discussed in more detail. Many delegations supported a proposal to draft a separate article on this issue, including Costa Rica, Mexico, Chile, the EU, Norway, and Japan. During the informal discussion of draft article 9, Chile emphasized that the need to guarantee access to justice and to the judicial system should be included, and then proposed an additional sentence on access to courts.39 Costa Rica, Liechtenstein, and Japan agreed that this issue should be addressed as a separate article rather than in article 9 itself.40 The Coordinator of the discussion proposed to work on Chile’s proposal and open a discussion on this text for further elaboration as a separate article.41 There were various suggestions for the exact terms used in the article, but the Committee could not reach a mutual agreement on wording. Therefore, the Coordinator asked Chile, Australia, and Japan to collaborate on a single text.42 These delegations met separately to draft article 9 bis, which read: ‘States Parties shall ensure effective access to justice for persons with disabilities on an equal basis with others, facilitating their effective role as direct and indirect participants in all legal proceedings, including the investigative and other preliminary stages.’43 No discussion on this draft was held during the sixth session, but prior to the seventh session, the Chairperson of the Ad Hoc Committee disseminated a complete draft text of the Convention to all members for consideration.44 This draft text was produced by considering the Working Group’s draft, all discussion reports and proposals during the previous sessions and was used as a basis for negotiation at the seventh session. The draft had restructured all article numbers and article 9 bis on access to justice had been changed to article 13. It had been addressed separately from the article on equal recognition before the law (now article 12) as agreed.45 Draft article 13 added an emphasis on the role of persons with disabilities as witnesses.46 37 Ad Hoc Committee, ‘Daily summary of discussions related to Article 9 Equal Recognition as a Persons before the Law’ (26 August 2004), available at: . 38 United Nations, ‘Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its fourth session’, available at: . 39 United Nations, ‘Daily summary of discussion at the fifth session’ (26 January 2005), available at: . 40 ibid. 41 Chile proposed the following wording ‘Pursuant to the principle of equal protection before the law in the exercise of human rights, states should guarantee adequate access to courts for PWD, facilitating their effective role as direct or indirect parties to contentious and non-contentious legal proceedings.’ In Ad Hoc Committee, ‘Daily summary of discussions at the fifth session’ (n 39). 42 ibid. 43 Ad Hoc Committee, ‘Article 13, Status of Discussions, Fifth Session: Report of the Coordinator’ (4 February 2005) available at: . 44 ‘Letter dated 7 October 2005 from the Chairman to all members of the Committee’ UN Doc A/AC265/ 2006/1 (15 October 2005). 45 ibid. 46 ‘Draft Article 13 on access to justice set out in the Chairman’s Letter dated 7 October 2005’ reads as follows: ‘States parties shall ensure effective access to justice for persons with disabilities on an equal basis with
flynn
390
Access to Justice
During the seventh session discussion on article 13, additional proposals were made by Israel and the International Disability Caucus to include a provision on accommodation, especially on age appropriate aspects, as this would be essential for persons with disabilities in accessing justice in practice.47 Chile further proposed to provide additional provisions on training of judges, judicial administrative staff and police and on procedural adjustments for persons with distinct disabilities.48 The Chairperson agreed to incorporate these essential issues into the draft text. At the eighth and final session, the draft Convention on the Rights of Persons with Disabilities was adopted by the Ad Hoc Committee without any change to draft article 13. The final text of article 13 incorporates some elements of earlier drafts, including the obligation to enable persons with disabilities to act as witnesses and participants in legal proceedings (an idea which first appeared in draft article 9) as well as the obligation to train justice officials (as suggested by Chile in the fourth session of the Ad Hoc Committee). It also contains some innovative additions, including the ‘provision of procedural and age-appropriate accommodations’—a concept which has clear connections with article 7 of the CRPD on children with disabilities and which also draws on the Asia Pacific Forum of National Human Rights Institutions’ proposal regarding the adaptation of evidence law and judicial procedures to accommodate people with disabilities. In the following section we will consider how both paragraphs of article 13 have been interpreted by the CRPD Committee, and in academic commentary, especially as they relate and connect to other articles of the Convention on issues of equality, participation, and accessibility.
3. Paragraph 1 3.1 ‘Effective’ Access to Justice The first requirement in article 13(1) is to ensure ‘effective’ access to justice for persons with disabilities. While the CRPD Committee has not elaborated on the meaning of ‘effective’ access in this respect, this provision might well be interpreted mutatis mutandis with the right to an effective remedy, already protected in international human rights law under the UDHR and ICCPR, as discussed above. A remedy is only considered ‘effective’ according to Roht-Arriaza, if it is both individualized and adjudicatory.49 A similar approach could be taken to determining the effectiveness of access to justice in the context of disability—where the individual’s particular requirements, for example, in terms of
others, facilitating their effective role as direct and indirect participants, including as witnesses, in all legal proceedings, including the investigative and other preliminary stages.’ In ‘Letter dated 7 October 2005 from the Chairman to all members of the Committee’ ibid, Annex I: Draft Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities— Submitted by the Chairman on the basis of discussion by the Ad Hoc Committee, available at: . 47 ‘Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its seventh session’ UN Doc A/AC265/2006/2 (13 February 2006). 48 Ad Hoc Committee, ‘Daily summary of discussion at the seventh session’ (18 January 2006) . 49 Naomi Roht-Arriaza, ‘State Responsibility to Investigate and Prosecute Grave Human Rights Violations in International Law’ (1990) 78 California Law Review 449.
flynn
Article 13
391
reasonable accommodation, must be met before justice can be considered to be effectively accessed. In order to achieve effective access to justice, the Committee has placed a particular emphasis on the need for legal representation and legal aid for persons with disabilities. For example, the Committee requested the Chinese government to allocate the necessary human and financial resources to existing legal aid service centres which were specifically established to serve persons with disabilities.50 Similar comments were made in the concluding observations on El Salvador, where the Committee requested that the state ‘[s]trengthen the mandate of the Office of the Human Rights Advocate regarding legal remedies for the defence of the rights of persons with disabilities’.51 In the Committee’s concluding observations on Mexico, this obligation was taken a step further as the state was asked to ‘provide legal aid to persons with disabilities who live in poverty or in institutions’52—a particularly relevant requirement given that institutionalisation can pose significant barriers to accessing legal information, advice, and representation, as well as securing access to justice. Further details on how effective access to justice could be achieved appear in the remainder of the paragraph, with examples of adaptations that could be made to legal proceedings. However, it is also important to note that the list provided in article 13(1) is open-ended, and the examples provided are not intended to be exhaustive.
3.2 ‘On an equal basis’ The overarching obligation of article 13 is to ‘ensure effective access to justice for persons with disabilities on an equal basis with others’.53 Although the obligation to prohibit discrimination is not explicitly mentioned in article 13, it is clearly implicit in the phrase ‘on an equal basis’ and is also a general principle and general obligation of the Convention under articles 3 and 4 respectively. The scope of the non-discrimination requirement is set out in article 5 CRPD. This makes it clear that action which is discriminatory in purpose or effect must be prohibited—thus embracing something akin to the notion of indirect (as well as direct) discrimination in EU law. It also makes it clear that a failure to provide reasonable accommodation is considered discrimination54 and must be prohibited. A reasonable accommodation, in this context, is an adjustment to standard practice or procedure which must be undertaken to remove a particular disadvantage at which a specific disabled person would otherwise be placed in order to access justice.55 Examples might include allowing more frequent breaks in the hearing for a person whose disability so requires; allowing a member of the deaf community to give evidence through a sign language interpreter; or changing the environment of the courtroom for a person whose sensory impairment makes them overly sensitive to certain kinds of light or noise.56 CRPD Committee, ‘Concluding Observations on China’ UN Doc CRPD/C/CHN/CO/1 (2012). CRPD Committee, ‘Concluding Observations on El Salvador’ UN Doc CRPD/C/SLV/CO/1 (2013) para 30(b). 52 CRPD Committee, ‘Concluding Observations on Mexico’ UN Doc CRPD/C/MEX/CO/1 (2014) para 26(b). 53 Art 13(1) CRPD. 54 See Art 2 CRPD, for a definition of ‘discrimination’ which includes a failure to provide a reasonable accommodation. 55 Art 2 CRPD. 56 For promising practices and identified challenges in achieving these communication and environmental accessibility measures in ten EU member states, see Mental Disability Advocacy Center, ‘Access to Justice for Children with Mental Disabilities: International Standards and Findings of Ten EU Member States’ (2015), 50 51
flynn
392
Access to Justice
The term ‘on an equal basis with others’ appears throughout the text of the CRPD, and is discussed further in other chapters within this volume. Its use can be viewed as a reflection of the mandate of the Ad Hoc Committee, which was not empowered to create new rights, but merely to restate the application of existing universal human rights to the lived experience of persons with disabilities. In this context, it can be understood to mean that disabled people should have the same opportunities as non-disabled people to access justice. In order to ascertain whether discrimination has occurred, the relevant question is whether a non-disabled person would have been able to access justice in the same circumstances where a disabled person has been prevented from accessing justice. Mégret further acknowledges that while ‘access to justice’ is not a new right, the fact that it is made explicit in the CRPD in a stand-alone article reflects the experience of people with disabilities who have been denied this right for so long.57 The use of the term ‘on an equal basis with others’ in this context also reinforces the links between access to justice, legal capacity and liberty, reflected in articles 12, 13, and 14. The General Comment on article 12 addresses the specific issue of access to justice in a section outlining the interconnection between the right to legal capacity and other core rights in the CRPD.58 This part of the General Comment highlights some key issues of interconnection between articles 12 and 13—including litigation capacity, competence to testify, fitness to plead—as well as broader symbolic and participatory issues concerning the representation of people with disabilities in positions of power within the justice system. While at the time of writing the Committee has not yet prepared a General Comment on article 13, these existing General Comments represent an important development in illuminating the Committee’s standpoint on access to justice, and may also provide a context for future concluding observations on article 13 for states parties who have yet to undergo dialogue with the Committee. The Committee’s Guidelines on article 14 also raise a number of issues that intersect with the right to access justice. The Guidelines consider that diversion mechanisms from the general justice system involving deprivations of liberty (eg involving non-consensual psychiatric treatment) violate both the right to liberty under article 14 and the right to access justice under article 13. The Committee states that: ‘These laws and procedures commonly have a lower standard when it comes to human rights protection, particularly the right to due process and fair trial, and are incompatible with article 13 in conjunction with article 14 of the Convention.’59 It is important to note that the Committee did not rule out the use of all diversion programmes in the criminal justice system, and specifically cited restorative justice as an example of a programme which could be effective in deterring future crime and one which should be available to persons with disabilities on an equal basis with others. The Committee’s Guidelines also highlighted declarations of unfitness to stand trial or incapacity to be found criminally responsible as measures that are contrary to article 14 of the Convention, as they ‘deprive the person of his or her right to due process and available at: . 57 Frederic Mégret, ‘The Disabilities Convention: Human Rights of Persons with Disabilities or Disability Rights?’ (2008) 30 Human Rights Quarterly 494, 512. 58 CRPD Committee, ‘General Comment on Article 12’ UN Doc CRPD/C/GC/1 (2014) paras 34–35. 59 CRPD Committee, ‘Guidelines on article 14 of the Convention on the Rights of Persons with Disabilities: The right to liberty and security of persons with disabilities’ para 14.
flynn
Article 13
393
safeguards that are applicable to every defendant.’60 Further, the Committee called on states to eliminate the use of ‘security measures’ that involve indefinite deprivation of liberty and absence of regular guarantees in the criminal justice system.61 Statements to this affect had also previously been included in the Committee’s concluding observations to various states under article 14, including New Zealand,62 Australia,63 Ecuador,64 and Korea.65 In the most recent Concluding Observations available at the time of writing, the UN Committee on the Rights of Persons with Disabilities appears to be focusing more explicitly on discrimination in the context of access to justice. For example, the Committee recommended that Mexico ‘adopt priority corrective measures to ensure that the groups of persons with disabilities who are particularly discriminated against also have access to justice.’66 Similarly, the Committee recommended that Korea ‘ensure the effective implementation of article 26 of the Anti-Discrimination against and Remedies for Persons with Disabilities Act.’67 Further recommendations of the Committee which detail the specific adaptations to the justice system which may be required to ensure effective access to justice for persons with disabilities will be discussed further in the following section.
3.3 ‘Procedural and age-appropriate accommodations’ As described above, article 13(1) does not explicitly mention reasonable accommodation, although this concept is clearly applicable to access to justice through articles 3, 4, and 5 CRPD. However, article 13(1) does require states to ensure that ‘procedural and age appropriate accommodations’ are carried out. Existing literature has noted that while the relationship between such accommodations and ‘reasonable accommodation’ is not explained in the treaty text, these procedural and age-related accommodations may be more generic and less individualized in approach than the obligation in article 5 CRPD to provide reasonable accommodation to persons with disabilities.68 Further, this literature suggests that the obligation to provide such accommodations in the context of access to justice ‘cannot be mitigated by arguments about reasonableness and the extent of the burden they would place on the duty-bearer’69 since the providers of such accommodations will inevitably be the state or public officials involved in the administration of justice.
61 ibid para 16. ibid para 20. CRPD Committee, ‘Concluding Observations on New Zealand’ UN Doc CRPD/C/NZL/CO/1 (2014) para 34. 63 CRPD Committee, ‘Concluding Observations on Australia’ UN Doc CRPD/C/AUS/CO/1 (2013) para 30. 64 CRPD Committee, ‘Concluding Observations on Ecuador’ UN Doc CRPD/C/ECU/CO/1 (2014) para 29. 65 CRPD Committee, ‘Concluding Observations on Korea’ UN Doc CRPD/ C/ KOR/ CO/ 1 (2014) para 28. 66 CRPD Committee, ‘Concluding Observations on Mexico’ UN Doc CRPD/C/MEX/CO/1 (2014) para 26(a). 67 CRPD Committee, ‘Concluding Observations on Korea’ UN Doc CRPD/ C/ KOR/ CO/ 1 (2014) para 24. 68 Anna Lawson and Eilionóir Flynn, ‘Disability and Access to Justice in the European Union: Implications of the UN Convention on the Rights of Persons with Disabilities’ (2013) 4 European Yearbook of Disability Law 7. 69 ibid. 60 62
flynn
394
Access to Justice
Clarity is now beginning to emerge from the concluding observations of the Committee on the Rights of Persons with Disabilities on the content and scope of procedural accommodations in the justice system—primarily those which can facilitate effective communication. For example, the Committee recommended that Costa Rica ensure ‘the guarantee of interpretation in Costa Rican sign language, the use of augmentative and alternative modes of communication and full accessibility to the physical environment, transport and communication’.70 The Committee has also now called for the full implementation of existing legislation to enable access to justice (including legislation on legal aid and the right to an effective remedy), and in the case of Ecuador specifically, has recommended that ‘the legislature introduce legislative reforms so that the national criminal, civil, labour, and administrative procedures include the requirement to make procedural accommodations for persons with disabilities, thereby enabling their access to justice on an equal basis with others’.71 The Committee has also elaborated on the need to ensure procedural accommodations for particularly marginalized groups of persons with disabilities. In its concluding observations on El Salvador, the Committee expressed concerns about the access to justice barriers faced by women and girls with disabilities, who the Committee noted were at higher risk of becoming ‘victims of abuse or neglect owing to the low credibility ascribed to their witness statements’.72 In light of this, the Committee asked El Salvador to ‘[p]ut in place reasonable procedural accommodation with a gender and age focus to ensure access to justice for persons with disabilities and to provide free legal assistance, information on each case—as early as the police investigation—in accessible formats, access to judicial buildings and the services of trained Salvadoran sign-language interpreters’. Further, the Committee recommended that the government ‘[a]dopt measures to secure access to justice for women and girls with disabilities, with due consideration paid to their role as witnesses and victims during the trial phase’.73 The issue of access to justice for children with disabilities was also highlighted in the concluding observations on Mexico, where the Committee recommended that the State ‘ensure that all children with disabilities have access to justice and may express their opinion in the course of the determination of the best interests of the child, through procedural accommodations appropriate to their age and specific disability-related needs.’74 These recommendations do not provide detailed guidance on specific age-appropriate accommodations that can ensure that children with disabilities can express their opinion on matters concerning them in the legal process, but rather reminds states of their obligation to ensure that this occurs. It is also worth noting that the Committee has not to date commented on the need to ensure age-appropriate accommodations for older persons with disabilities—but the use of the term ‘age-appropriate’ rather than ‘age-based’ in the text of the article seems to suggest that the drafters only had children in mind, and were
70 CRPD Committee, ‘Concluding Observations on Costa Rica’ UN Doc CRPD/C/CRI/CO/1 para 26. 71 CRPD Committee, ‘Concluding Observations on Ecuador’ UN Doc CRPD/C/ECU/CO/1 para 27. 72 CRPD Committee, ‘Concluding Observations on El Salvador’ UN Doc CRPD/C/SLV/CO/1 para 30. 73 ibid paras 30(a) and (d). 74 CRPD Committee, ‘Concluding Observations on Mexico’ UN Doc CRPD/C/MEX/CO/1 para 26(c).
flynn
(2014) (2014) (2013) (2014)
Article 13
395
not considering general age-based discrimination in the justice system, which could encompass older persons with disabilities. The Committee has also commented on the need for procedural accommodations in specific kinds of legal proceedings in its concluding observations. For example, with respect to Australia, the Committee focuses on the particular need for procedural accommodations in the criminal justice system, recommending that the state ‘ensure that all persons with disabilities who have been accused of crimes and are currently detained in jails and institutions, without trial, are allowed to defend themselves against criminal charges, and are provided with required support and accommodation to facilitate their effective participation’.75 The Committee also required China to review ‘its procedural civil and criminal laws in order to make mandatory the necessity to establish procedural accommodation for those persons with disabilities who intervene in the judicial system’.76 Procedural accommodations should be interpreted differently from the related obligations in articles 5 and 9 to ensure ‘reasonable accommodation’ and ‘accessibility’ for persons with disabilities. The Committee’s General Comment on article 9 sets out the distinction between reasonable accommodation duties and legal obligations to provide accessibility as follows: Accessibility is group related, whereas reasonable accommodation is individual related. This means that the duty to provide accessibility is an ex ante duty. That means the State party has the duty to provide accessibility before individual request to enter or use a place or service. State parties need to set accessibility standards which have to be negotiated with organizations of persons with disabilities, and these standards need to be prescribed to service providers, builders, and other relevant stakeholders.77
The General Comment goes on to make the following link between these accessibility obligations and access to justice: There can be no effective access to justice if buildings of law-enforcement organs and judiciary aren’t physically accessible, if the services they provide, information and communication aren’t accessible (article 13).78
There is also clearly some overlap between the general accessibility obligations in article 9 and the specific requirements of article 21 to make information and communication accessible in order to ensure freedom of expression for persons with disabilities. Discourse on accessibility and the legal obligations to provide access in the spheres of information and communication in particular (which are perhaps those most relevant for access to justice) is in its infancy—and a conclusive finding on the application of these obligations is beyond the scope of this analysis. Nevertheless, as international jurisprudence on this issue continues to develop, states will have to come to grips with these concerns, and particularly, as stated in the General Comment on article 9, may have to negotiate with organisations of persons with disabilities in order to understand how legal information and advice can be provided in an accessible manner in order to ensure effective access to justice. 75 CRPD Committee, ‘Concluding Observations on Australia’ UN Doc CRPD/C/AUS/CO/1 (2013) para 30. 76 CRPD Committee, ‘Concluding Observations on China’ UN Doc CRPD/C/CHN/CO/1 (2012) para 24. 77 CRPD Committee, General Comment on Article 9 UN Doc CRPD/C/GC/2 (2014) para 22. 78 ibid para 33.
flynn
396
Access to Justice
The development of a General Comment on article 13 would build on the concluding observations to date and could provide further guidance from the Committee on concrete examples of procedural accommodations that might be expected of states in the context of access to justice. In the meantime, scholars have provided several examples of how this requirement to provide procedural accommodations could be interpreted. Lawson and Flynn suggest that one example might be changing the eligibility criteria for legal aid79 to ensure that it is open to disabled people who wish to pursue discrimination claims.80 Gibson takes this argument further and contends that article 13 can be read to include a right to legal aid, stating: ‘If article 13 of the CRPD is to have any meaning, then it follows that—in the absence of forums which are simple enough in both procedure and substantive law to allow disabled citizens to have a fair hearing without the assistance of a lawyer—the convention requires states to provide legal aid to people with disabilities who cannot access private legal assistance and that, at a minimum, legal aid should be available for cases involving breaches of the human rights referred to in the treaty.’81 Such an expansive reading of article 13 might well be challenged by states parties. However, Gibson makes a crucial point about the need for radical reform of procedural mechanisms, including courts and tribunals, to accommodate people with disabilities who wish to assert and enforce their legal rights, and locates her argument within the commentaries of various UN treaty bodies on the availability of legal aid in the civil and criminal context to ensure the realisation of a wide variety of human rights. As has been argued elsewhere, the provision of an independent statutory advocate could also fall within the obligation to make procedural accommodations for effective access to justice as outlined in article 13.82 There are also examples in many countries of reform in the fields of evidence and procedural law to enable people with disabilities to testify in court, including the initiation of a special process for disabled victims of serious crimes in Israel,83 the use of victim-friendly courts in Zimbabwe,84 and the increasing use of video-recorded and video-link evidence for children and adults with disabilities. As these countries come to be reviewed by the Committee, and as issues concerning access to justice are increasingly highlighted in shadow reports, it will be made increasingly clear what obligations states have to make procedural and age-appropriate accommodations for persons with disabilities.
3.4 Direct and Indirect Participants, Including as Witnesses As discussed above, the term ‘direct and indirect participants’ was introduced by Chile in its proposal for a separate article on access to justice in the fourth session of the Ad Hoc Committee. However, the term ‘direct and indirect’ participants is not further defined in Lawson and Flynn (n 58). See eg Caroline Gooding, ‘Disability Discrimination Act: From Statute to Practice’ (2000) 20 Critical Social Policy 533. 81 Frances Gibson, ‘Article 13 of the Convention on the Rights of Persons with Disabilities—A Right to Legal Aid?’ (2010) 15 Australian Journal of Human Rights 123, 131. 82 Eilionóir Flynn, ‘Making Human Rights Meaningful for People with Disabilities: Advocacy, Access to Justice and Equality before the Law’ (2013) 17 International Journal of Human Rights 491. 83 Neta Ziv, ‘Witnesses with Mental Disabilities: Accommodations and the Search for Truth—The Israeli Case’ (2007) 27 Disability Studies Quarterly 51. 84 Innocentia Mgijima, ‘Access to Justice for Disabled Child Victims of Sexual Crimes in Zimbabwe: The Implications of Article 13 of the United Nations Convention on the Rights of Persons with Disabilities’ (LLM thesis, NUI Galway August 2013). 79 80
flynn
Article 13
397
the text of article 13, nor has it been elaborated upon in the Concluding Observations issued to date by the UN Committee. Participants in ‘all legal proceedings’ could be understood to include the parties to the case (plaintiffs and defendants), witnesses, as specified in the text of the article itself, victims, jury members, lawyers, judges, tribunal members, court staff. One interpretation is that the term ‘direct participant’ refers to those directly involved in, or affected by, the outcome of a legal proceeding—including the parties to the case, legal representatives, and adjudicators such as the judge and jury. Indirect participants could then include court staff, court reporters, members of the public who attend the hearing, and even other potential claimants who could be affected by the outcome of the hearing. The specific reference to witnesses in this part of article 13 is important—and procedural accommodations required for witnesses to participate and give testimony in proceedings has been a key focus of the Committee’s concluding observations, as described above. Further elaboration on who is considered a participant in legal proceedings could be provided if the Committee develops a general comment on article 13. At the regional level in Europe, the European Court of Human Rights has cited article 13 CRPD in a number of cases involving plaintiffs with intellectual and psychosocial disabilities. Unfortunately, the article is often referred to in passing without any analysis of its impact on the interpretation of the relevant ECHR provisions. However, in one case, RP v UK,85 the European Court has commented on the content of article 13 CRPD. This case involved the removal of the baby of a young woman with intellectual disabilities from her care by a local authority in the UK. The woman’s solicitor felt that she lacked the capacity to provide legal instructions, and the Official Solicitor was appointed as her litigation friend to instruct her solicitor on her behalf. The Official Solicitor’s legal responsibility is to represent the ‘best interests’ of the client, rather than to communicate the person’s wishes to the court.86 In this case, the Official Solicitor did not oppose the making of the care order in light of the evidence, and as a result RP’s solicitor did not contest this evidence or argue against the order in court. Based on the ‘best interests’ standard, RP was not able to effectively challenge the removal of her child from her care. The applicant alleged a violation of her right to a fair hearing under article 6 ECHR before the European Court in the decision that her child should be removed from her care, as well as a violation of her right to respect for family life under article 8 ECHR. Although the Court did not find that any violation of RP’s ECHR rights had occurred, it did cite article 13 CRPD and stated as follows: In cases involving those with disabilities the Court has permitted the domestic courts a certain margin of appreciation to enable them to make the relevant procedural arrangements to secure the good administration of justice and protect the health of the person concerned.87 This is in keeping with the United Nations Convention on the Rights of Persons with Disabilities, which requires States to provide appropriate accommodation to facilitate the role of disabled persons in legal proceedings. However, the Court has held that such measures should not affect the very essence of an applicant’s right to a fair trial as guaranteed by Article 6 (1) of the Convention.88
(App no 38245/08) [2012] ECHR 1796. Office of the Official Solicitor and the Public Trustee, The Official Solicitor and the Public Trustee: Annual Report 1 April 2011–31 March 2012 (London 2012) 13. 87 See eg Shtukaturov v Russia, no 44009/05, judgment (27 March 2008) para 68. 88 App no 38245/08 [2012] ECHR 1796 para 67. 85 86
flynn
398
Access to Justice
The Court did not comment on the quality or nature of the procedural accommodations required by the CRPD, or address whether the Official Solicitor’s approach respected the applicant’s human rights. However, the Court did hold that ‘in order to safeguard RP’s rights under article 6(1) of the Convention, it was imperative that a means existed whereby it was possible for her to challenge the Official Solicitor’s appointment or the continuing need for his services’.89 This decision provides some insight into how article 13 CRPD might influence further development of the European Court’s jurisprudence on access to justice for persons with disabilities.90 It will be interesting to track how, as the CRPD is increasingly widely ratified, and in some states, incorporated into domestic law, how the interpretation of article 13 CRPD might further develop in arguments before domestic courts. The UN Committee on the Rights of Persons with Disabilities has also heard X v Argentina,91 the applicant, a disabled prisoner, alleged violations by Argentina of articles 9, 10, 13, 14, 15, 17, 25, and 26 CRPD, based on his treatment in prison and the conditions he endured there. His argument concerning article 13 was based on the fact that he was obliged to travel to the court where the oral proceedings against him were taking place despite his state of health and against the advice of his doctors. When he arrived at court, he was denied entry to the hearing, and forced to remain in the ambulance or on a stretcher outside the courtroom. The Committee did find that the applicant’s rights under articles 9, 14, 15, 17, and 26 had indeed been violated by Argentina during his detention. However, the Committee determined that based on the documentation submitted, the applicant had not exhausted all domestic remedies in respect of his allegation concerning article 13 and therefore declared this portion of the communication inadmissible under article 2(d) of the Optional Protocol.
3.5 All Legal Proceedings, Including at Preliminary Stages While the focus of article 13(1) is on legal proceedings, the Committee has to date taken an expansive view of the types of hearings and processes that come within the scope of this paragraph. For example, access to justice in non-judicial proceedings was addressed by the Committee in its concluding observations on New Zealand, in the context of the assessment of accident compensation claims and the possible establishment of an Accident Compensation Tribunal. The Committee requested the state to ‘examine the processes for the assessing of compensation by the Accident Compensation Corporation to ensure that adequate legal aid is available and that its processes are fully accessible to all claimants, and finally to ensure that this mechanism has a human rights focus’.92 Further, the Committee recommended that the representative organisations of persons with disabilities be consulted as part of the establishment of any tribunal, and that ‘the tribunal adopt a flexible approach to the admission of evidence, and that those who lack the means should be given adequate legal aid to ensure full access to the tribunal’.93 ibid para 70. Lucy Series, ‘Legal Capacity and Participation in Litigation: Recent Developments in the European Court of Human Rights’ (2015) 5 European Yearbook on Disability Law 103. 91 CRPD Committee, Communication No 8/2012, X v Argentina UN Doc CRPD/C/11/D/8/2012 (18 June 2014). 92 CRPD Committee, ‘Concluding Observations on New Zealand’ UN Doc CRPD/C/NZL/CO/1 (2014) para 24. 93 ibid para 26. 89 90
flynn
Article 13
399
The Committee has also received an individual communication concerning the right to participate in all legal proceedings.94 In this case, the applicant, a deaf man, alleged a violation of his rights under articles 12, 13, 21, and 29 CRPD, based on domestic laws that denied deaf jurors a right to sign language interpretation during court proceedings or in jury deliberations. The Committee however deemed this case inadmissible, as the applicant had not been personally affected by the law in question. It held that for a person to claim to be the victim of a violation of a right protected by the Convention, he or she must show either that an act or an omission of the State party concerned has already adversely affected his or her enjoyment of that right, or that such an effect is imminent, for example, on the basis of existing law and/or judicial or administrative decision or practice. The applicant did argue that an infringement of his CRPD rights was imminent, as he might be imminently selected from the Electoral Roll to perform jury duties, which in turn would give rise to the assessment of his ability to perform those duties, as well as the outcome of this assessment. However, the Committee held that this argument was merely hypothetical and hence the applicant could not therefore claim victim status within the meaning of article 1(1) of the Optional Protocol. As described above in reference to procedural accommodations, the Committee has paid particular attention to specific kinds of legal proceedings where persons with disabilities may be unfairly disadvantaged, especially in the criminal justice system. In its concluding observations on Paraguay, the Committee noted with concern that criminal law provided for special ‘care measures’ which could be applied to persons with disabilities without the same level of respect for due process as would be available in a normal criminal trial. The Committee therefore recommended ‘that the state party review its legislation with a view to ensuring that criminal sanctions applicable to persons with psychosocial or intellectual disabilities are subject to the same degree and have the same conditions as any other person subject to the justice system, providing in such cases that the administration of justice is done in a manner which is reasonable and respects due process’.95 Concerns regarding unequal treatment in the criminal justice system are also echoed in the Committee’s concluding observations on Australia, which requires ‘the State party to ensure that persons with psychosocial disabilities are ensured the same substantive and procedural guarantees as others in the context of criminal proceedings, and in particular to ensure that no diversion programmes to transfer individuals to mental health commitment regimes or requiring an individual to participate in mental health services are implemented’.96 These recommendations indicate that the Committee does not consider alternative pathways from criminal proceedings, such as the imposition of ‘care measures’ or diversion to mental health treatment, to be ‘procedural accommodations’ in line with article 13(1), but rather, violations of the right to access justice on an equal basis with others. This approach is now echoed in the Committee’s Guidelines on article 14 on the right to liberty and security, as will be discussed further below.
94 CRPD Committee, Communication No 12/2013, A M v Australia UN Doc CRPD/C/13/D/12/2013 (29 May 2015). 95 CRPD Committee, ‘Concluding Observations on Paraguay’ UN Doc CRPD/C/PRY/CO/1 (2013) para 32. 96 CRPD Committee, ‘Concluding Observations on Australia’ UN Doc CRPD/C/AUS/CO/1 (2013) para 29.
flynn
400
Access to Justice
4. Paragraph 2 While the first paragraph of article 13 is primarily focused on participation in the ‘legal system’ including within this ‘all investigative and preliminary stages’ as discussed above, the second paragraph of article 13 adopts a broader approach. This is indicated by its requirement to ensure training of all those ‘working in the field of administration of justice, including police and prison staff’. Much of the Committee’s concluding observations to date have focused on the need for more training for a wide range of professionals. For example, the Committee recommended that El Salvador: ‘[d]esign training programmes for all those involved in the legal system, including the police, judges, legal professionals, social workers and health-care workers, in both urban and rural areas.’97 This approach gives an expansive interpretation to the term ‘those working in the field of administration of justice’, extending it beyond legal professionals, court staff, police, and prison staff, to social workers and healthcare workers. The Committee further required Australia to ensure that ‘standard and compulsory modules on working with persons with disabilities be incorporated into training programmes for police officers, prison staff, lawyers, the judiciary and court personnel’.98 A specific emphasis on training for the judiciary, legal professionals and court staff has also emerged in more recent concluding observations, such as those issued to New Zealand,99 Korea,100 and Ecuador.101 Aiello102 notes that the domestic courts in Argentina relied upon article 13 CRPD in one case involving a request to restrict the legal capacity of a young woman with Down syndrome.103 In this case the judge refused to deprive the woman of her legal capacity as she was capable of making decisions with the support of her mother, relying on article 12 CRPD. The court also ordered some medical experts to undergo training on the rights of persons with disabilities, in keeping with article 13 CRPD. The need for training has also emerged strongly from the shadow reports submitted to the Committee by civil society organisations, especially the representative organisations of persons with disabilities. For example, the Peruvian National Confederation of People with Disabilities highlighted this issue in their shadow report to the Committee, stating that: ‘In Peru, pertinent treatment is not given to persons with disabilities with regard to their access to justice, the speediness of the proceedings in which they are involved, or the necessary training of judges and penitentiary personnel in attending to them.’104 While not all of the recommendations made in shadow reports are mirrored in the Committee’s concluding observations, these reports nonetheless provide important information for 97 CRPD Committee, ‘Concluding Observations on El Salvador’ UN Doc CRPD/C/SLV/CO/1 (2013) para 30(c). 98 CRPD Committee, ‘Concluding Observations on Australia’ (n 78) para 28. 99 CRPD Committee, ‘Concluding Observations on New Zealand’ UN Doc CRPD/C/NZL/CO/1 (2014) para 28. 100 CRPD Committee, ‘Concluding Observations: Korea’ UN Doc CRPD/C/KOR/CO/1 (2014) para 24. 101 CRPD Committee, ‘Concluding Observations on Ecuador’ UN Doc CRPD/C/ECU/CO/1 (2014) para 27. 102 Ana Laura Aiello, ‘Argentina’ in Anna Lawson and Lisa Waddington, Interpreting and Domesticating the UN Convention on the Rights of Persons with Disabilities: A Comparative Analysis of the Role of Courts (OUP 2017). 103 NGA Por Proceso De Restricción De Capacidad, Juzgado Civil de Personas y Familia de Sexta Nominación de Salta, judgment (18 June 2015). 104 Peruvian National Confederation of People with Disabilities, Alternative Report on the Compliance with the Convention on the Rights of Persons with Disabilities (Lima 2012) 10.
flynn
Article 13
401
the dialogue which the Committee undertakes with states parties, and represent a vital opportunity to draw attention to potential violations of Convention rights, and areas for further improvement by states in their implementation of article 13 at grassroots level. The inclusion of a specific right to access justice in the CRPD has also led other UN treaty bodies and mechanisms to place a renewed emphasis on this issue in their work, including the disability-dimensions of accessing justice. Since the CRPD entered into force, the UN High Commissioner for Human Rights has identified specific challenges facing disabled children in its 2013 report on access to justice for children.105 Similarly, the Expert Mechanism on the Rights of Indigenous Peoples and the Special Rapporteur on Poverty and Human Rights have issued reports on access to justice for indigenous peoples (including specific barriers faced by indigenous people with disabilities)106 and challenges in accessing justice for those in extreme poverty (also including people with disabilities).107 Most recently, the Committee on the Elimination of All Forms of Discrimination Against Women have published a new General Recommendation on women’s access to justice (including guidelines for ensuring a disability-sensitive and accessible justice system).108 It is also likely that the CRPD Committee will continue to receive individual communications concerning alleged violations of article 13 CRPD, and the issues raised in the two cases discussed above—courtroom access and jury service, may well reappear in future communications. Many of the issues raised in concluding observations may also form the basis for future communications to the Committee on this article, including legal aid and representation, diversion from the mainstream justice system, accessibility of information, and communication in court, and eligibility for a wide range of roles within the justice system, including as lawyers, court staff, and judges. These developments all highlight the growing interest in this topic in the international human rights community, and the potential for article 13 CRPD to guide future developments in this field.
105 UNGA, ‘Report of the United Nations High Commissioner for Human Rights: Access to justice for children’ UN Doc A/HRC/25/35 (2013). 106 UNGA, ‘Access to justice in the promotion and protection of the rights of indigenous peoples: restorative justice, indigenous juridical systems and access to justice for indigenous women, children and youth, and persons with disabilities’, Study by the Expert Mechanism on the Rights of Indigenous Peoples UN Doc A/ HRC/27/65 (2014). 107 UNGA, ‘Report of the Special Rapporteur on Extreme Poverty and Human Rights, Access to Justice by People Living in Poverty’ UN Doc A/67/278 (2012). 108 CEDAW Committee, ‘General Recommendation on Women’s Access to Justice’ UN Doc CEDAW/C/ GC/33 (2015).
flynn
Article 14 Liberty and Security of the Person . States Parties shall ensure that persons with 1 disabilities, on an equal basis with others: (a) Enjoy the right to liberty and security of person; (b) Are not deprived of their liberty unlawfully or arbitrarily, and that any deprivation of liberty is in conformity with the law, and that the existence of a disability shall in no case justify a deprivation of liberty.
. States Parties shall ensure that if per2 sons with disabilities are deprived of their liberty through any process, they are, on an equal basis with others, entitled to guarantees in accordance with international human rights law and shall be treated in compliance with the objectives and principles of this Convention, including by provision of reasonable accommodation.1
1. Introduction 2. Background and Travaux Préparatoires 3. Paragraph 1(a) 4. Paragraph 1(b) 4.1 Unlawful and Arbitrary Deprivation of Liberty 4.2 ‘in conformity with the law’ 4.3 Therapeutic Jurisprudence 5. Paragraph 2 5.1 Human Rights Guarantees 5.2 Therapeutic Jurisprudence in Paragraph 2
402 403 406 408 408 411 415 418 422 424
1. Introduction Article 14 has become one of the most controversial articles in the CRPD, and it is essential that the contrasting positions be understood if we are to come to grips with the ultimate significance of this provision. Paragraph 1 (a)—which broadly states the fundamental right to liberty and security2—has not inspired much contention, but the remainder of the article—fraught with ambiguities about restrictions of this right—has. Paragraph 1 (b) seeks to ensure that any deprivation of liberty is lawful, systematic, and non-discriminatory, while paragraph 2 seeks to outline rights—protective conditions of deprivation—including reasonable accommodations. In this chapter, we trace the
1 UN General Assembly, Convention on the Rights of Persons with Disabilities: UNGA Res 61/106 (24 January 2007) (sometimes CRPD). 2 See eg Richard M Duffy and Brandon D Kelly, ‘Rights, Laws and Tensions: A Comparative Analysis of the Convention on the Rights of Persons with Disabilities and the WHO Resource Book on Mental Health, Human Rights and Legislation’ (2017) 54 Int’l J L and Psychiatry 26, 30.
perlin and szeli
Article 14
403
legislative history of article 14 and, in an analysis of its provisions and interpretations, seek to understand its application in light of these complexities. We begin with some explanatory background in an effort to flesh out the meaning of the different phrases and clauses of article 14. ‘On an equal basis with others’ means basically the same as ‘equal recognition before the law, . . . the right to be heard and acknowledged on an equal basis with others in making one’s own decisions’.3 The phrase ‘liberty and security of the person’ is, according to the Supreme Court of Canada, ‘illustrative of the meaning of the principles of fundamental justice’.4 The relationship between ‘reasonable accommodation’ and detention in this context should be read to follow the holding of the European Court on Human Rights’ (ECtHR) decision in Ashingdane v United Kingdom,5 that held that a patient was detained ‘in the sense that his liberty, and not just his freedom of movement, [had] been circumscribed both in fact and in law . . . , even though he [had] been permitted to leave the hospital on frequent occasions’. Importantly, the ‘liberty and security’ clause of this Article empowers the Committee on the Rights of Persons with Disabilities ‘to question governments on a broad range of potential violations, including civil commitment proceedings, compulsory medical treatment, and conditions inside medical and detention facilities’.6 Certainly, when the European Court on Human Rights was created, ‘the intention of the drafters was to protect people from arbitrary detention’.7 The right to liberty of person and the right to security of person have been described as two aspects of the same right, physical liberty being the substantive aspect and security the means of protection or the procedural aspect.8 The United States Supreme Court—in Lawrence v Texas—has articulated the core of this right: ‘Liberty protects the person from unwarranted government intrusions into a dwelling or other private places. . . . Freedom extends beyond spatial bounds. Liberty presumes an autonomy of self that includes freedom of thought, belief, expression, and certain intimate conduct.’9
2. Background and Travaux Préparatoires What is of special interest is that there has been so little scholarly analysis of the pre- submission negotiations that led to the articulation of the language of this article.10 However, the procedural history and preparatory documents provide a timeline of its 3 Christopher P Guzelian, Michael Ashley Stein, and Hagop S Akiskal, ‘Credit Scores, Lending, and Psychosocial Disability’ (2015) 95 BUL Rev 1807, 1849. 4 R v Rose [1998] 3 SCR 262 para 95. 5 Ashingdane v United Kingdom [1985] 7 EHRR 528. See generally, Lawrence O Gostin and Lance Gable, ‘The Human Rights of Persons with Mental Disabilities: A Global Perspective on the Application of Human Rights Principles to Mental Health’ (2004) 63 Md L Rev 20, 58. 6 Carole Peterson, ‘The Convention on the Rights of Persons with Disabilities: Using International Law to Promote Social and Economic Development in the Asia Pacific’, (2013) 35 U Haw L Rev 821, 836. 7 See also Rhonda Louise Powell, ‘The Right to Security of Person in European Court of Human Rights Jurisprudence’, (2007) 12 Eur Hum Rts L Rev 649, 651. 8 Ophelia Claude, ‘A Comparative Approach to Enforced Disappearances in the Inter-American Court of Human Rights and the European Court of Human Rights Jurisprudence’ (2010) 5 Intercultural Hum Rts L Rev 407, 448 fn 226. 9 539 US 558, 562 (2003). 10 In the law review scholarship, these negotiations have only been considered carefully in Sheila Wildeman, ‘Protecting Rights and Building Capacities: Challenges to Global Mental Health Policy in Light of the Convention on the Rights of Persons with Disabilities’ (2013) 41 J L Med and Ethics 48, 56–57; see infra text accompanying note 46. But see Maya Sabatello and Marianne Schulze (eds), Human Rights and Disability
perlin and szeli
404
Liberty and Security of the Person
evolution during Working Group meetings and Ad Hoc Committee sessions.11 By 2004, an early draft of the Convention12 included the following version of article 10 (as article 14 was originally denominated): 1. States Parties shall ensure that persons with disabilities: (a) Enjoy the right to liberty and security of the person, without discrimination based on disability; (b) Are not deprived of their liberty unlawfully or arbitrarily, and that any deprivation of liberty shall be in conformity with the law, and in no case shall be based on disability. 2. States Parties shall ensure that if persons with disabilities are deprived of their liberty, they are: (a) Treated with humanity and respect for the inherent dignity of the human person, and in a manner that takes into account the needs they have because of their disabilities; (b) Provided with adequate information in accessible formats as to the reasons for their deprivation of liberty; (c) Provided with prompt access to legal and other appropriate assistance to: (i) Challenge the lawfulness of the deprivation of their liberty before a court or other competent, independent and impartial authority (in which case they shall be provided with a prompt decision on any such action); (ii) Seek regular review of the deprivation of their liberty; (d) Provided with compensation in the case of unlawful deprivation of liberty, or deprivation of liberty based on disability, contrary to this Convention. Early recommendations from the Working Group to the Ad Hoc Committee included consider ation of: (a) whether civil and criminal cases should be dealt with separately; (b) whether the text need[ed] further elaboration on civil cases of deprivation of liberty; and (c) whether, for criminal cases, the clauses in this text dealing with procedural matters need[ed] strengthening.13
Specifically, the Working Group suggested that the Ad Hoc Committee consider whether paragraph 1(b) prohibited—or should prohibit—civil commitment,14 and also recommended ‘adding a provision that [would oblige] states to reform laws and procedures that perpetuate the arrest and detention of persons with disabilities on the basis of disability’.15 Later in 2004, during its third session, the Ad Hoc Committee considered these recommendations of the Working Group, and in addition proposed amendments set forth
Advocacy (Univ of Pennsylvania Press 2014) 50, 84, 205 (only three references to Art 14 in the leading text on these negotiations). In his book, International Human Rights and Mental Disability Law: When the Silenced Are Heard (OUP 2011) 38, one of the co-authors (Michael Perlin) notes that the drafting process—via the Ad Hoc Committee, see (n 11), relied on perspectives of observers such as Prof Aaron Dhir. See Aaron A Dhir, ‘Human Rights Treaty Drafting Through the Lens of Mental Disability: ‘The Proposed International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (2005) 41 Stan J Int’l L 181, 182, who argues that ‘degrading living conditions, coerced “treatment”, scientific experimentation, seclusion, restraints—the list of violations to the dignity and autonomy of those diagnosed with mental disabilities is both long and egregious’. 11 See the online United Nations Audiovisual Library of International Law, available at: and the Ad Hoc Committee’s website, available at: for documentation of the negotiations. 12 UN General Assembly, ‘Report of the Working Group to the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2004/WG 1 (27 January 2004). 13 14 15 ibid at 16 fn 35. ibid at 16 fn 36. ibid at 16 fn 37.
perlin and szeli
Article 14
405
by participating states and observers.16 This included Canada’s proposal for the insertion of the word ‘solely’ in paragraph 1(b), stipulating that ‘. . . any deprivation of liberty shall be in conformity with the law, and in no case shall be based solely on disability’ (emphasis added).17 Over the following two years, participating states and observers discussed and debated the content and language of the article. Daily summaries of discussions during Ad Hoc Committee sessions highlighted differences of opinion and focus among stakeholders.18 Concerned about dehumanization and abuse, Inclusion International sought revisions to ensure ‘that no law could force people to live in institutions’. Disabled Peoples’ International agreed, emphasizing that ‘No level of institutionalization should be necessary.’ Meanwhile, Save the Children focused on clarifying the grounds for permissible deprivation of liberty—and expressed general concern that the article was not providing adequate protection for persons with disabilities. Most notably, the World Network of Users and Survivors of Psychiatry (WNUSP) and Support Coalition International opposed the addition of the word ‘solely’ to the Working Group’s draft of Article 10: Deprivation of liberty based on disability encompasses civil commitment and forced institutionalization as well as private deprivation of liberty. If the [Ad Hoc Committee] adds the term ‘solely’, it would open the door for States to deprive persons with disabilities of their liberty for being ‘a danger to society’, which is discriminatory because people without disabilities are not subject to the same standard. If there is no crime, a State cannot lock up person who is not considered mentally [i]ll or intellectually disabled. PWD should not be subject to a different standard. There is a moral obligation to move society toward inclusiveness. If a person with a disability is deprived of liberty, that imposes a social disadvantage and therefore, under the social model, that is discrimination.19
During its fifth session, in 2005, the Ad Hoc Committee discussed article 10 in depth, including further proposals by participating states and observers.20 The re-drafted article 10 read as follows, with proposed text in brackets: 1. States parties shall ensure that persons with disabilities, on an equal basis with others: (a) Enjoy the right to liberty and security of person; (b) Are not deprived of their liberty unlawfully or arbitrarily, and that any deprivation of liberty is in conformity with the law and in no case [based solely [exclusively] on disability] [shall the existence of a disability justify a deprivation of liberty]. 2. States parties shall ensure that if persons with disabilities are deprived of their liberty [through a civil, criminal, administrative or other process], they have at least the following guarantees: (a) To be treated with humanity and respect for the inherent dignity and worth of the human person, and in a manner that respects their human rights, conforms with the objectives and principles of this Convention, and reasonably accommodates their disability; (b) To be provided [promptly] with adequate accessible information as to their legal rights and the reasons for the deprivation of their liberty;
16 UN General Assembly, ‘Report of the Third Session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2004/5 (9 June 2004). 17 ibid at 24. 18 See eg UN CRPD Third session of the Ad Hoc Committee—Daily summary of discussions related to Article 10: Liberty and Security of the Person, Vol 4 No 3 (26 May 2004). 19 ibid. 20 UN General Assembly, ‘Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its Fifth Session’ UN Doc A/AC265/2005/2 (23 February 2005).
perlin and szeli
406
Liberty and Security of the Person
(c) To be provided with prompt access to legal and other appropriate assistance to: (i) Challenge the lawfulness of the deprivation of their liberty [and to receive a fair hearing, including the right to be heard] before a court or other competent, independent and impartial authority (in which case, they shall be provided with a prompt decision on any such action); [(ii) Seek review on an equal basis with others of the deprivation of their liberty, including periodic review as appropriate;] [(d) To be provided with compensation in the case of deprivation of liberty contrary to this Convention.] [3. Any person with a disability who has been the victim of unlawful deprivation of liberty shall have an enforceable right to compensation.].
By the seventh session of the Ad Hoc Committee one year later, the working text of article 14 (now re-numbered) was largely in its final form. Paragraphs 1(a) and 2 had been simplified, but the word ‘solely’ (and its proposed variants) had been struck from paragraph 1(b), creating a controversy that persists over a decade later.
3. Paragraph 1(a) Paragraph 1(a) states, straight-forwardly, that state parties must ensure that persons with disabilities, ‘on an equal basis with others, . . . [e]njoy the right to liberty and security of person’.21 This is certainly uncontroversial as a broad statement;22 the difficulty comes in how this ‘fits’ with interpretations of the far-more complex paragraphs 1(b) and (2).23 It is also important to note that this declaration is ‘new business’ in much of the world; at this point in time, globally, only nine percent of constitutions explicitly guarantee the right to liberty to persons with disabilities.24 While paragraph 1 asserts the broad right to liberty and security of the person, as well as the conditions under which this right may be restricted, paragraph 2 addresses the guarantees and the rights protected while liberty is denied. When read together, these paragraphs of article 14 CRPD ‘empower . . . the Committee [on the Rights of Persons with Disabilities] to question governments on a broad range of potential violations, including civil commitment proceedings, compulsory medical treatment, and conditions inside medical and detention facilities’.25 Scholars have turned to article 14 CRPD as a basis for providing legal protection for, variously, persons in prison,26 LGBTI immigration detainees,27 ‘the enjoyment of home life’,28 and the community integration mandate set out in domestic anti-discrimination 21 The right to liberty is an integral part of all international human rights law. See eg Art 12 ICCPR; Art 5 ECHR. It appeared in at least eight international covenants and conventions prior to the ratification of the CRPD. See Lucien J Dhooge, ‘Lohengrin Revealed: The Implications of Sosa v Alvarez-Machain for Human Rights Litigation Pursuant to the Alien Tort Claims Act’ (2006) 28 Loy Int’l and Comp L Rev 393, 460–61. 22 See Peter Bartlett, ‘The United Nations Convention on the Rights of Persons with Disabilities and Mental Health Law’ (2012) 75 Mod L Rev 752, 772. 23 See text accompanying (fns 42–64). 24 Amy Raub et al, ‘Constitutional Rights of Persons with Disabilities: An Analysis of 193 National Constitutions’ (2016) 29 Harv Hum Rts J 203, 227. 25 Petersen (n 6) 836. 26 Kathryn DeMarco, ‘Disabled by Solitude: The Convention on the Rights of Persons with Disabilities and Its Impact on the Use of Supermax Solitary Confinement’ (2012) 66 U Miami L Rev 523, 545. 27 Shana Tabak and Rachel Levitan, ‘LGBTI Migrants in Immigration Detention: A Global Perspective’ (2014) 37 Harv J L and Gender 1, 31. 28 Anna Lawson, ‘The United Nations Convention on the Rights of Persons with Disabilities: New Era or False Dawn?’ (2007) 34 Syracuse J Int’l L and Comm 563, 612.
perlin and szeli
Article 14
407
legislation and court decisions,29 and have questioned the extent to which it protects religious rights.30 The controversy here comes when a more difficult series of questions is addressed, namely whether article 14 prohibits, in toto, forced or compulsory treatment or living situations such as institutionalization.31 By way of example from the CRPD jurisprudence to date, in Mr X v Argentina, the CRPD Committee concluded that Argentina failed to meet its obligations under article 14 CRPD in a case where the appellant, who had suffered a stroke, argued that he should be released from prison and placed under house arrest.32 The Committee’s analysis focused on the conditions of detention—under paragraph 2 of article 14—rather than the justification for it, and the Committee pointed out that ‘states parties have a special responsibility to uphold human rights when prison authorities exercise significant control or power over persons with disabilities who have been deprived of their liberty by a court of law’.33 This issue is particularly relevant to persons with mental disabilities (both psychiatric and intellectual), as they are most vulnerable to restrictions of liberty that are related to the nature of their disabilities. At the time of the writing of this chapter, there were at least four pending cases that might shed some light on or test the exact contours of this article 14.34 Since the CRPD has entered into force, article 14 has been available as relevant international law in deprivation of liberty cases brought under article 5 of the European Convention on Human Rights (ECHR).35 In a 2013 case before the European Court of Human Rights (ECtHR), this was one of the cornerstones of an intervention by third parties36 endorsing a ‘dynamic interpretation’ of the ECHR in light of the CRPD and arguing that ‘any denial of liberty where disability is a factor [is] a deprivation of the right to liberty and thus in conflict with article 14 [CRPD]’.37 As such, the CRPD served not only to reinforce the universal liberty rights protected in the ECHR, but to highlight the specific need for ‘rigorous scrutiny of any deprivation of liberty of persons with disabilities’.38 29 Megan Flynn, ‘Olmstead Plans Revisited: Lessons Learned from the UN Convention on the Rights of Persons with Disabilities’ (2010) 28 Law and Ineq 407, 432. 30 See eg Sylvie Langlaude, ‘Children and Religion Under Article 14 UNCRC: A Critical Analysis’ (2008) 16 Int’l J Children’s Rights 475. 31 See Vandana Peterson, ‘Understanding Disability under the Convention on the Rights of Persons with Disabilities and Its Impact on International Refugee and Asylum Law’ (2014) 42 Ga J Int’l and Comp L 687, 697; Bernadette McSherry, ‘Regulating Seclusion and Restraint in Health Care Settings: The Promise of the Convention on the Rights of Persons with Disabilities’ (2017) 53 Int’l J L and Psychiatry 59. 32 Mr X v Argentina UN Doc CRPD/C/11/D/8/2012 (18 June 2014) para 9. In at least one non- institutionalization case, the CRPD Committee has rejected consideration of an Art 14 claim by an individual with a physical disability seeking building permission for the construction of a hydrotherapy pool on grounds of incompatibility of the extension in question with the city development plan. See H M v Sweden UN Doc CRPD/C/7/D/3/2011 (21 May 2012), with the Committee simply stating, see para 7.4 ‘[appellant’s] claims are insufficiently substantiated’. 33 ibid para 9.9. 34 Pending Art 14 cases include consideration of issues that are more directly related to mental disabilities, such as the institutionalization of persons with intellectual impairment (Australia), the incarceration of persons with intellectual impairment declared unfit to stand trial (Australia), forced hospitalization and treatment including electroshock (Australia), and hospitalization in psychiatric hospital and appointment of guardian without consent (Germany), available at: . 35 See eg Asalya v Turkey [2014] ECHR 398. 36 Including the European Disability Forum, the International Disability Alliance, and the World Network of Users and Survivors of Psychiatry. 37 Mihailovs v Latvia [2013] ECHR 65 para 124. The applicant—a man with psychological symptoms secondary to epilepsy—successfully argued that he had been deprived of his liberty while under guardianship and detained in a state-run social care institution without judicial review. 38 See ibid para 126.
perlin and szeli
408
Liberty and Security of the Person
Moreover, in a 2014 concurring opinion, Judge András Sajó of the ECtHR emphasized that ‘[t]he paradigm shift to a rights-based approach to disability encapsulated by the CRPD pose[d] potential challenges for the existing legal frameworks governing involuntary placement and involuntary treatment’.39 By 2015, in reviewing the detention of a mentally ill criminal offender, the ECtHR was citing the CRPD Committee’s statement on article 14 from the previous year,40 and concluding that ‘[d]eprivations of liberty based on the existence of a disability are intrinsically discriminatory’.41 As such, there seems to be increased reliance on the CRPD as applicable international law, with particular attention paid to evolving guidelines in the application of article 14 CRPD.
4. Paragraph 1(b) 4.1 Unlawful and Arbitrary Deprivation of Liberty The key question underlying article 14(1)(b) CRPD is whether its protection against ‘arbitrary and unlawful deprivation of liberty’42 encompasses all forms of institutionalization,43 or only some circumstances, and subsequently whether involuntary hospitalization is permissible if an individual poses a serious risk of harm to himself or others.44 Alternatively, does it simply ensure that persons with disabilities are not deprived of their liberty unlawfully or arbitrarily, and that any deprivation of liberty is ‘consistent with the spirit of the law’?45 The text is silent, thus making resolution of this important question difficult.46 Although the UN Office of the High Commissioner for Human Rights (OHCHR) tersely stated in 2009 that article 14 CRPD requires that ‘legislation authorizing the institutionalization of persons with disabilities on the grounds of disability without their free and informed consent must be abolished’,47 Professor Peter Bartlett notes that the Ruiz Rivera v Switzerland [2014] ECHR 156. Kuttner v Austria (App No 7997/08) judgment (16 October 2015) citing the CRPD. 41 ibid para 2. 42 There is not a general consensus as to what ‘arbitrary’ means in this context. See eg Derek P Jinks, ‘The Anatomy of an Institutionalized Emergency: Preventive Detention and Personal Liberty in India’ (2001) 22 Mich J Int’l L 311, 355 (‘patterns of actual state practice suggest widespread disagreement as to the meaning of “arbitrary” ’), citing, inter alia, Diane Amman, ‘Harmonic Convergence? Constitutional Criminal Procedure in an International Context’ (2000) 75 Indiana LJ 809 (2000) and Li-Ann Thio, ‘Implementing Human Rights in ASEAN Countries: “Promises to Keep and Miles to Go Before I Sleep” ’ (1999) 2 Yale Hum Rts and Dev LJ 1 (1999). 43 See Peterson (n 31) 697–98. 44 Rebecca Zarett, ‘To Work and to Love: How International Human Rights Law Can Be Used to Improve Mental Health in the United States’ (2016) 40 Fordham Int’l L J 191, 208. See eg Sascha Mira Callaghan and Christopher Ryan, ‘Is There a Future for Involuntary Treatment in Rights-Based Mental Health Law?’ (2014) 21 Psychiatry, Psychol and L 747 (2014) (arguing that the CRPD does allow for involuntary treatment in some instances, and that ‘failing to account for it in law will jeopardise rights more than it protects them’). 45 Ana Elena Abello Jiminez, ‘Criminalizing Disability: The Urgent Need of a New Reading of the European Convention on Human Rights,’ (2015) 30 Am U Int’l L Rev 285, 290. 46 See Wildeman (n 10) 54–61. Compare Michael L Perlin and Meredith Schriver, ‘You Might Have Drugs at Your Command: Reconsidering the Forced Drugging of Incompetent Pre-trial Detainees from the Perspectives of International Human Rights and Income Inequality’ (2015) 8 Albany Gov’t L Rev 381, 390 (‘the question of whether involuntarily medicating a forensic patient violates, in the words of the CRPD, the “integrity of the person” is, under any circumstances, an important one that we must take seriously’) (referring to parallel provisions in Art 17 CRPD). 47 Bartlett (n 22) 772, citing UN OHCHR, ‘Annual Report’, UN Doc A/HRC/10/48 (26 January 2009) para 48. 39 40
perlin and szeli
Article 14
409
OHCHR ‘was at pains to say that this did not necessarily preclude persons with disabilities from being subject to preventive detention’.48 In this context, the OHCHR continued by stating that: This should not be interpreted to say that persons with disabilities cannot be lawfully subject to detention for care and treatment or to preventive detention, but that the legal grounds upon which restriction of liberty is determined must be de-linked from the disability and neutrally defined so as to apply to all persons on an equal basis.49
Significantly, in its concluding observations the CRPD Committee has consistently interpreted article 14 as requiring parties to repeal legal provisions authorizing deprivation of liberty based on psychosocial or intellectual disability and to ensure that mental health services are based on free and informed consent of the person concerned.50 In this context, it has urged countries as diverse as Austria, El Salvador, and Australia to ‘take all necessary legislative, administrative and judicial measures to ensure that no one is detained against their will in any kind of mental health facility’.51 Similarly, the Committee has called on both Tunisia and Spain to reform their mental health laws, moving away from a system of detention based on disability.52 It is clear, however, that this interpretation ‘is far from crystallized at the level of state practice’.53 During its twelfth session in 2014, the CRPD Committee adopted a statement to summarize and clarify its commentary on state reports regarding article 14.54 It ‘unpacked’ article 14 as follows:55 1. The absolute prohibition of detention on the basis of disability. There are still practices in which states parties allow for the deprivation of liberty on the grounds of actual or perceived disability. In that regard, the Committee has established that article 14 does not permit any
ibid at 773. ibid citing UN Doc A/HRC/10/48 (26 January 2009) para 48. Elsewhere, Bartlett asks: ‘Care of people with severe dementia, for example, may well result in deprivation of liberty; are we really to say that we allow these people to wander away from their place of care, in the name of rights?’—see Peter Bartlett, ‘The United Nations Convention on the Rights of Persons with Disabilities and the Future of Mental Health Law’ (2009) 8 Psychiatry 496, 498; see also CRPD Committee, ‘Concluding Observations on Spain’, UN Doc CRPD/C/ ESP/CO/1 (19 October 2011) para 36, as discussed in FRA (European Union Agency for Fundamental rights), ‘Involuntary Placement and Involuntary Treatment of Persons with Mental Health Problems’ (2012) 16. 50 See Cleveland Ferguson III et al, ‘International Human Rights’ (Spring 2014) 48 Year in Rev (ABA) 453, citing CRPD Committee, ‘Concluding Observations on the Initial Periodic Report of Hungary’, UN Doc CRPD/C/HUN/CO/1 (22 October 2012) para 28; CRPD Committee, ‘Concluding Observations on the Initial Report of Spain’, UN Doc CRPD/C/ESP/CO/1 (19 October 2011) para 36; CRPD Committee, ‘Concluding Observations on the Initial Report of China’ UN Doc CRPD/C/CHN/CO/1 (15 October 2012) para 26. On the implications of the CRPD for domestic laws, see Gregor Maucec, Tackling Disability- based Discrimination in International and European Law, (2013) 13 Int’l J Discrim & L 34, 38 (‘Its provisions bind EU institutions and will also bind the EU member states when they are applying EU law.’). 51 CRPD Committee, ‘Concluding Observations on the Initial Report of Austria’ UN Doc CRPD/C/AUT/ CO/1 (13 September 2013) paras 29–30; UN Committee, ‘Concluding Observations on the Initial Report of El Salvador’ UN Doc CRPD/C/SLV/CO/1 (8 October 2013) para 32; CRPD Committee, ‘Concluding Observations on the Initial Report of Australia’ UN Doc CRPD/C/AUS/CO/1 (4 October 2013) para 34. 52 Bartlett (n 22) 773; for Tunisia, see CRPD Committee, ‘Concluding Observations on the Initial Report of Tunisia’ UN Doc CRPD/C/TUN/CO/1 (13 May 2011); for Spain see CRPD Committee, ‘Concluding Observations on the Initial Report of Spain’ UN Doc CRPD/C/ESP/CO/1 (19 October 2011). 53 Janet E Lord, ‘Shared Understanding or Consensus-Masked Disagreement? The Anti-Torture Framework in the Convention on the Rights of Persons with Disabilities’ (2010) 33 Loy LA Int’l and Comp L Rev 27, 56. 54 Report of the CRPD Committee on its Twelfth Session (15 September–3 October 2014) UN Doc CRPD/C/12/2 (5 November 2014). 55 ibid at Annex IV (footnotes in block quote added by authors). 48 49
perlin and szeli
410
Liberty and Security of the Person
exceptions whereby persons may be detained on the grounds of their actual or perceived disability. However, the legislation of several states parties, including mental health laws, still provide instances in which persons may be detained on the grounds of their actual or perceived disability, provided there are other reasons for their detention, including that they are dangerous to themselves or to others. Such practice is incompatible with article 14 as interpreted by the jurisprudence of the Committee.56 2. Mental health laws that authorize detention of persons with disabilities based on the alleged danger to themselves or to others. Through all its considerations of state party reports, the Committee has established that it is contrary to article 14 to allow for the detention of persons with disabilities based on a perceived danger to themselves or to others. The involuntary detention of persons with disabilities based on presumptions of risk or dangerousness tied to disability labels is contrary to the right to liberty.57 For example, it is wrong to detain someone just because they are diagnosed with paranoid schizophrenia.58 3 . Detention of persons unfit to plead in criminal justice systems. The Committee has established that declarations of unfitness to stand trial and the detention of persons based on that declaration is contrary to article 14 CRPD59 since it deprives the person of his or her right to due process and safeguards that are applicable to every defendant.60 4 . Reasonable accommodation and prisons. The Committee is of the view that persons with disabilities who are sentenced to imprisonment for committing a crime should be entitled
56 See CRPD Committee, ‘Concluding Observations on the Initial Report of Sweden’ UN Doc CRPD/C/ SWE/CO/1 (12 May 2014) para 35: ‘The Committee is concerned that Swedish law allows for a person to be confined against his or her will in a medical facility if he or she has a psychosocial disability and is considered to be a danger to himself or herself or to others.’. See also CRPD Committee, ‘Concluding Observations on the Initial Report of Austria’ UN Doc CRPD/C/ AUT/CO/1 (30 September 2013) para 29: ‘The Committee is deeply concerned that Austrian law allows for a person to be confined against his or her will in a psychiatric institution if he or she has a psychosocial disability and is considered to be a danger to himself or herself or to others. The Committee is of the opinion that the legislation is in conflict with article 14 of the Convention because it allows a person to be deprived of liberty on the basis of actual or perceived disability.’ 57 See CRPD Committee, ‘Concluding Observations on the Initial Report of El Salvador’ UN Doc CRPD/ C/SLV/CO/1 (8 October 2013) para 32: ‘The Committee calls on the State party to abolish the rules that allow for deprivation of liberty on grounds of disability, which portray persons with disabilities as potentially dangerous to themselves or others or as being in need of care or treatment.’ 58 But, on the question of the abolition of involuntary detention, see Bernadette McSherry, ‘Mental Health Laws: Where to from Here?’ (2014) 40 Monash U L Rev 175, 197, who notes that: ‘The abolition of mental health laws raises the spectre that there will be more lives lost to suicide and/or more persons with mental impairments brought within the criminal justice system via laws of preventive detention.’ See also generally, Bernadette McSherry and Kay Wilson, ‘Detention and Treatment Down Under: Human Rights and Mental Health Laws in Australia and New Zealand’ (2011) 19 Medical L Rev 548 (on why civil commitment need not be abolished under Art 14). 59 See CRPD Committee, ‘Concluding Observations on the Initial Report of Australia’ UN Doc CRPD/ C/AUS/CO/1 (21 October 2013) para 31: ‘The Committee is concerned that persons with disabilities who are deemed unfit to stand trial due to an intellectual or psychosocial disability can be detained indefinitely in prisons or psychiatric facilities without being convicted of a crime and for periods that can significantly exceed the maximum period of custodial sentence for the offence.’ 60 On the need for formal procedural accommodations to make court proceedings accessible for accused persons with cognitive disabilities, and ‘to ensure dispositions are on an equal basis with others’, see Piers Gooding et al, ‘Unfitness to Stand Trial and the Indefinite Detention of Persons with Cognitive Disabilities in Australia: Human Rights Challenges and Proposals for Change’ (2017) 40 Melb U L Rev 816, 821. On the issue of the quality of representation made available to persons at competency-to-stand-trial hearings, see Michael L Perlin and Heather Ellis Cucolo (eds), Mental Disability Law: Civil and Criminal (LexisNexis 3rd edn, 2017), § 13-1.5.4, at §§ 13-60 to 13-61, quoting Professor William T Pizzi, ‘Competency to Stand Trial in Federal Courts: Conceptual and Constitutional Problems’ (1977) 45 U Chi L Rev 21, 27 (‘For practical reasons, the key to the competency issue is the defense attorney.’); see also eg Norma Schrock, ‘Defense Counsel’s Role in Determining Competency to Stand Trial’ (1996) 9 Geo J Legal Ethics 639.
perlin and szeli
Article 14
411
to reasonable accommodation in order not to aggravate conditions of incarceration based on disability.61
The following year, during its fourteenth session in 2015, the CRPD Committee adopted guidelines on article 14, intended to re-affirm, expand and replace its previous statement.62 Its most notable conclusion was that ‘[A]rticle 14(1)(b) prohibits the deprivation of liberty on the basis of actual or perceived impairment even if additional factors or criteria are also used to justify the deprivation of liberty’.63 It is critical here to consider the interpretation posed by Professor Bernadette McSherry, who concluded that by: ‘shifting the focus away from involuntary detention and treatment, to providing and funding high quality services and support systems adapted to individual needs, the CRPD highlights that there may just be a midway point between these two extremes’.64
4.2 ‘in conformity with the law’ In the United States, civil commitment must be predicated both on a finding of mental illness and, as a result of that mental illness, dangerousness to self or others.65 The US Supreme Court has recognized that involuntary civil commitment is a ‘massive 61 See CRPD Committee, ‘Concluding Observations on the Initial Report of El Salvador’ UN Doc CRPD/ C/SLV/CO/1 (8 October 2013) para 32:The Committee calls on the State party to establish a mechanism to monitor the situation of persons with disabilities in prisons and other detention centres and to set up a legal framework for the provision of reasonable accommodation that preserves their dignity. See eg In the Matter of María Inés Chinchilla Sandoval (Guatemala), Case 12.739, Inter-American Commission on Human Rights (2 April 2014), (finding that, despite the special obligations incumbent upon the state when it incarcerates a person with disabilities, the state did not provide her with the conditions necessary to protect her rights (prisoner, a wheelchair user, fell down steps, and proper medical services were not subsequently provided). 62 ‘Guidelines on Article 14 of the Convention on the Rights of Persons with Disabilities: The right to liberty and security of persons with disabilities’, adopted during the CRPD Committee’s 14th session, held in September 2015. 63 ibid para 7. Additionally, there was a notable shift in the language used by the Committee, replacing the term ‘disability’ with ‘impairment’: ‘Impairment in these guidelines is understood as a physical, psycho-social, intellectual, or sensory personal condition which may or may not come with functional limitations of the body, mind or senses. Impairment differs from what is usually considered the norm. Disability is understood as the social effect of the interaction between individual impairment and social and material environment as described in Art 1 CRPD.’ibid at fn 1. 64 McSherry (n 58) 197; see also ibid at 185: ‘It appears unlikely in the short term that mental health legislation as it currently exists will be repealed, given the focus of policymakers on law reform rather than abolition, but the Committee’s statements interpreting art 14 indicate that mental health laws that enable the involuntary detention of those with mental impairments are incompatible with this Article.’ It is important to note that disability rights activists have focused on the role of the medical profession in ensuring that the CRPD is implemented. See Lindsay Roberts and Christopher Tansey, ‘Interview with Oliver Lewis, Executive Director of the Mental Disability Advocacy Center,’ (Winter 2012) 19 Hum Rts Brief 30, 31: ‘Given that nothing will change if the medical fraternity digs in its heels, I think the UN Committee on the Rights of Persons with Disabilities should reach out to the psychiatric community, and bring them into the discourse and provide clearer guidance. There are logistical and political hurdles to overcome, but it is possible.’ Also in this context, see Lucia A Silecchia, ‘The Convention on the Rights of Persons with Disabilities: Reflections on Four Flaws that Tarnish Its Promise’ (2013) 30 J Contemp Health L and Pol’y 96, 114–15: ‘[T]he CRPD’s steadfast rejection of the medical/charitable model means that it regrettably fails to provide much guidance on the rights of those whose disabilities are so profound that lifelong care and support are required. The CRPD does not speak to these circumstances in any detail. Yet, in reality, the best intentions and the most advanced adaptations may still not be able to eliminate the effects of some physical and mental impairments. Virtually ignoring these scenarios in the CRPD leads to a failure to frame realistically the rights of those least able to protect themselves.’ 65 See generally Perlin and Cucolo (n 60) §§ 3.3–3.7. In some jurisdictions, ‘dangerousness to property’ is an acceptable basis as well; ibid § 3.8.
perlin and szeli
412
Liberty and Security of the Person
curtailment of liberty’66 that requires legal justification. The Fourteenth Amendment of the United States Constitution attaches both substantive and procedural due process requirements67 to state infringements on individual liberty in the commitment process,68 thereby ensuring that due process principles are applicable in protecting the rights of those citizens with mental illness or mental disorder who are subject to involuntary hospitalization. The Fourteenth Amendment’s due process clause applies to both the nature and duration of any civil commitment.69 In the landmark case of O’Connor v Donaldson,70 the US Supreme Court established that due process limits the state’s civil commitment authority, since ‘involuntary commitment to a mental hospital, like involuntary commitment of an individual for any reason, is a deprivation of liberty which the state cannot accomplish without due process of law.’71 Under an O’Connor substantive due process analysis, ‘[a]finding of “mental illness” alone cannot justify a state’s locking a person up against his will and keeping him indefinitely in simple custodial confinement. Assuming that that term can be given a reasonably precise content and that the “mentally ill” can be identified with reasonable accuracy, there is still no constitutional basis for confining such persons involuntarily if they are dangerous to no one and can live safely in freedom.’72 The Supreme Court emphasized that ‘. . . a state cannot constitutionally confine without more a non-dangerous individual who is capable of surviving safely in freedom by himself or with the help of willing and responsible family members or friends’.73 As such, the deprivation of liberty on the basis of mental status alone is constitutionally impermissible. Based on the Supreme Court’s O’Connor analysis, the substantive criteria for involuntary civil commitment can be generally organized under two prongs, or standards. The first prong concerns mental illness.74 The definition of this first prong, explicitly articulated in almost every state civil commitment statute,75 generally contains both inclusionary and exclusionary criteria. Such definitions are, in part, an attempt to clarify which particular sub-groups of individuals who may carry a label of mental illness are most likely to be functionally affected in such a way as to potentially require civil commitment. While a treatable mental illness is a threshold constitutional requirement for involuntary civil commitment,76 in no state is the establishment of mental illness alone adequate for involuntary hospitalization under pertinent civil commitment statutes.77 In each instance, there must be a causal connection between such mental illness and dangerousness.78
Humphrey v Cady,405 U.S. 504, 509 (1972). Due process includes both substantive and procedural elements. Substantive due process depends on the criteria that must be met—or justifications that must be established—before liberty may be restricted, while procedural due process focuses on the various steps in effecting such a restriction of liberty. Erwin Chemerinsky, Constitutional Law Principles and Policies (Aspen, 3d edn 2006) 545. 68 69 70 Jackson v Indiana 406 US 715 (1972). ibid at 738. 422 US 563 (1975). 71 ibid at 580, citing Specht v Patterson 386 US 605, 608 (1967). 72 73 Chemerinsky, (n 67) at 575. ibid. 74 Terminology used in state civil commitment statutes includes ‘mental illness’, ‘mental disorder’, ‘mental disability’, and ‘psychiatric disabilities’. See Perlin and Cucolo (n 60) § 3-3.2, at §§ 3-18 to 3-43. 75 76 See ibid § 3-3.1. Foucha v Louisiana 504 US 71, 86 (1992). 77 See Perlin and Cucolo (n 60) § 3-4.1; O’Connor 422 US at 575. 78 On the meaning of ‘dangerousness,’ see ibid Perlin and Cucolo § 3-4.1, at §§ 3-47 to 3-48. No question in the area of the involuntary civil commitment process has proven to be more vexing than the definition of the word ‘dangerousness’ or the related issue of whether it is truly a legal or a medical concept. 66 67
perlin and szeli
Article 14
413
The second prong in civil commitment statutes is critical in establishing a functional test to determine if a person with mental illness meets some standard to make involuntary hospitalization appropriate and necessary. The legal justification for the empowerment of a state to effect the involuntary civil commitment of a particular sub-sample of its citizens is grounded in Aristotelian philosophy79 and is based on two principles. The first concerns the state’s police power to protect itself and its citizens from danger and other forms of serious harm,80 whereas the second concerns its parens patriae power over those who are dependent on the government for protection, sustenance, or care.81 The civil commitment statutes in all fifty US states and the District of Columbia allow involuntary civil commitment under the state’s police power when there is mental illness, plus evidence of dangerousness or serious harm to self or others.82 These standards outline functional parameters of danger, serious harm, or injury that may result from mental illness and are, per se, constitutional under O’Connor.83 Many states also allow involuntary civil commitment under a standard that invokes the state’s parens patriae authority. Eleven states explicitly incorporate a grave disability standard.84 Unlike the dangerousness standard, which is based on the prediction of future behaviour grounded in observations of past or current behaviour, the grave disability standard generally requires current proof of a functional incapacity to care for oneself.85 Such standards have withstood constitutional challenges86 and are clearly based on an individual’s functional limitations as a result of mental illness. Additionally, many states also include other second prong standards under the state’s parens patriae responsibility, by including criteria encompassing serious deterioration that specifically endangers the individual with mental illness, or otherwise taking into account a functional inability to exercise self-care due to the mental illness.87 While such statutes have been the subject of some constitutional challenges, the leading case in this area,
Aristotle, Nicomachean Ethics, Book V Ch 8. See Hugh A Ross, ‘Commitment of the Mentally Ill: Problems of Law and Policy’ (1959) 57 Mich L Rev 945, 955. For general and classic statements, see District of Columbia v Brooke, 214 US 138, 149 (1909): ‘In the case at bar, we are dealing with an exercise of the police power—one of the most essential of powers, at times the most insistent, and always one of the least limitable of the powers of government.’ See also, Jacobson v Massachusetts 197 US 11 (1905); John Q LaFond, ‘An Examination of the Purposes of Involuntary Civil Commitment’ (1981) 30 Buffalo L Rev 499, 501. 81 See LaFond (n 80) at 504–05. 82 See eg Lessard v Schmidt 349 F Supp 1078 (E D Wis 1972) (civil commitment can be justified where dangerousness is based upon a finding of a recent overt act, attempt or threat to do substantial harm to oneself or another); see generally, Sarah Gordon, ‘The Danger Zone: How the Dangerousness Standard In Civil Commitment Proceedings Harms People With Serious Mental Illness’ (2016) 66 Case W Res L Rev 657 (2016). 83 See text accompanying (nn 73–81). 84 Alaska, Arizona, California, Colorado, Connecticut, Hawaii, Idaho, Indiana, Lousiana, New Mexico (‘grave passive neglect’), and Washington. 85 See John Parry, Civil Mental Disability Law, Evidence and Testimony: A Comprehensive Reference Manual for Lawyers, Judges and Mental Disability Professionals (American Bar Ass’n 2010) 478; see also David Wexler and Bruce Winick, Essays in Therapeutic Jurisprudence (Carolina Academic Press 1991). 86 See eg Doe v Gallinot, 486 F Supp 983, 991 (C D Cal 1979), aff’d, 657 F 2d 1017 (9th Cir 1981), relying in part on O’Connor, to support commitment where the threat of harm to oneself ‘may be through neglect or inability to care for oneself ’. 87 See Carol Trevey, ‘ “Prisoners of the Mind”?: The Inappropriateness of Comparing the Involuntarily Committed Mentally Ill to Pretrial Detainees in Fourth Amendment Analyses,’ (2011) 13 U Pa J Const L 1435, 1462–63. Many of the provisions in such statutes specifically link such functional limitations to a risk of danger or serious harm or injury to the person. 79 80
perlin and szeli
414
Liberty and Security of the Person
Colyar v Third Judicial District Court,88 has outlined the constitutional contours of the civil commitment power in applying such standards based on the parens patriae power. These include a showing of mental illness; an immediate danger to self, ‘which may include the inability to provide the basic necessities of life’, and ‘an inability to make a rational treatment decision due to mental illness’.89 As with other legal justifications under the parens patriae authority of the state, these standards are grounded in functional limitations suffered by the individual as a result of mental illness. Furthermore, to ensure that substantive due process standards are met—and, thus, individual liberties are protected—procedural due process requirements mandated under the Fourteenth Amendment are implemented through numerous procedural protections incorporated into all involuntary civil commitment statutes, most significantly the right to a hearing,90 the right to counsel,91 the right to notice,92 the right to recordation and/ or a transcript of the commitment hearing,93 the right to cross-examine witnesses,94 an elevated burden of proof,95 and the right to appeal.96 There is significant scholarly controversy on the extent to which pre-CRPD international human rights law adequately provides legal protections to persons facing civil commitment.97 Looking specifically at the case of Herczegfalvy v Austria,98 Professor David Hewitt has concluded that that the ECtHR has interpreted the European Convention ‘very restrictively in psychiatric cases’.99 On the other hand, Professor Gerard Quinn has concluded that the due process protections of the ‘negative right to liberty . . . are very robust under the Convention’.100 The focus here is not on whether or not rights have been granted to their fullest capacity, but rather, on whether there is an opportunity to have a
89 469 F Supp 424 (D Utah 1979). ibid at 432. See generally Perlin and Cucolo (n 60) § 4-2.2.1 for a discussion of the constitutional requirement of a judicial hearing for an order of civil commitment. 91 See generally ibid, ch 6, for an overview of the role of counsel and its constitutional underpinnings. 92 93 94 See ibid § 4-2.2.1.9 See ibid § 4-2.2.1.8. See ibid § 4-2.2.1.10. 95 In recognition of the liberty interest at stake, the burden of proof for meeting the substantive criteria for civil commitment was elevated by the U.S. Supreme Court from preponderance of the evidence to clear and convincing evidence, since ‘civil commitment . . . constitutes a significant deprivation of liberty that requires due process protection.’ Addington v Texas, 441 US 418, 425 (1979). See Perlin and Cucolo (n 60) §§ 4-2.3 to 4-2.3.2.1. 96 See ibid § 4-2.4.2.2; see also ibid § 4-2.4.2.3 (right to habeas corpus) and § 4-2.4.2.4 (right to periodic review). There are other critical procedural areas in which US courts are split; see eg ibid § 4-2.2.1.11 (right to jury trial), ibid §§ 4-2.2.1.12 to 4-2.2.1.14 (right to assert privilege against self-incrimination), and ibid §§ 4-2.2.1.14.1 (application of hearsay exception in rules of evidence). 97 See Michael L Perlin, ‘Promoting Social Change in Asia and the Pacific: The Need for a Disability Rights Tribunal to Give Life to the UN Convention on the Rights of Persons with Disabilities’ (2012) 44 Geo Wash Int’l L Rev 1, 10, fn 50. 98 Herczegfalvy v Austria (1992) 15 EHRR 437 (although the European Court on Human Rights noted that the position of inferiority and powerlessness typical of patients confined to psychiatric hospitals, calling for increased vigilance, it ultimately did not find a violation of Article 3 of the European Convention, which prohibits torture and inhuman treatment, but noting that, in that case, the use of ‘handcuffs and security bed . . . appears worrying.’ 99 David Hewitt, ‘Do Human Rights Impact on Mental Health Law?’, (2001) 151 New LJ 1278, 1278. 100 Gerard Quinn, ‘Civil Commitment and the Right to Treatment under the European Convention on Human Rights’ (1992) 5 Harv Hum Rts J 1 48. Professor Bruce Winick has bridged the gap between Hewitt and Quinn by arguing that, even in the absence of case law, many of the ongoing ‘abusive practices’ of commitment, treatment, and institutional conditions still common in Eastern Europe ‘can be understood to violate the [European Convention] and other evolving principles of international human rights law’—Bruce Winick, ‘Therapeutic Jurisprudence and the Treatment of People with Mental Illness in Eastern Europe: Construing International Human Rights Law’ (2002) 21 NY L Sch J Int’l and Comp L 537, 572. 88 90
perlin and szeli
Article 14
415
debate about those rights, and to consider the extent to which human rights have been protected.
4.3 Therapeutic Jurisprudence Finally, no consideration of article 14 CRPD is complete without a consideration of the interplay between this provision and the school of thought known as therapeutic jurisprudence.101 One of the most important legal theoretical developments of the past three decades has been the creation and dynamic growth of therapeutic jurisprudence (TJ).102 Therapeutic jurisprudence presents a new model for assessing the impact of case law and legislation, recognizing that, as a therapeutic agent, the law can have therapeutic or anti- therapeutic consequences.103 Therapeutic jurisprudence asks whether legal rules, procedures and lawyer roles can or should be reshaped to enhance their therapeutic potential while not subordinating due process principles.104 David Wexler clearly identifies how the tension inherent in this inquiry must be resolved: ‘the law’s use of mental health information to improve therapeutic functioning [cannot] impinge upon justice concerns’.105 Such an inquiry into therapeutic outcomes does not mean that ‘therapeutic concerns “trump” civil rights and civil liberties’.106
101 Text accompanying (nn 102–20) is generally adapted from Michael L Perlin and Alison J Lynch, ‘ “All His Sexless Patients”: Persons with Mental Disabilities and the Competence to Have Sex,’ (2014) 89 Wash L Rev 257; Mehgan Gallagher and Michael L Perlin, ‘ “The Pain I Rise Above”: How International Human Rights Can Best Realize the Needs of Persons with Trauma-Related Mental Disabilities’ (2018) Fla J Int’l L (forthcoming), available at: , and Michael L Perlin and Naomi Weinstein, ‘ “Said I, But You Have No Choice”: Why a Lawyer Must Ethically Honor a Client’s Decision About Mental Health Treatment Even if It Is Not What S/he Would Have Chosen’ (2016–2017) 15 Cardozo Public L, Pol’y and Ethics J 73. Further, it distills the work of one of the co-authors over the past two decades-plus, beginning with Michael L Perlin, ‘What Is Therapeutic Jurisprudence?’ (1993) 10 NY L Sch J Hum Rts 623. 102 See eg David B Wexler, Therapeutic Jurisprudence: The Law as a Therapeutic Agent (Carolina Academic Press 1990); David B Wexler and Bruce J Winick, Law in a Therapeutic Key: Recent Developments in Therapeutic Jurisprudence (Carolina Academic Press 1996); Bruce J Winick, Civil Commitment: A Therapeutic Jurisprudence Model (Carolina Academic Press 2005). Wexler first used the term in a paper he presented to the National Institute of Mental Health in 1987—see David B Wexler, ‘Putting Mental Health into Mental Health Law: Therapeutic Jurisprudence’ (1992) 16 Law and Hum Behav 27, 27, 32–33 (Wexler, Putting Mental Health); David B Wexler, ‘Therapeutic Jurisprudence Forum: The Development of Therapeutic Jurisprudence: From Theory to Practice’ (1999) 68 Rev Jur UPR 691, 693–94. 103 See Michael L Perlin, ‘ “His Brain Has Been Mismanaged with Great Skill”: How Will Jurors Respond to Neuroimaging Testimony in Insanity Defense Cases?’ (2009) 42 Akron L Rev 885, 912 (2009); see also Kate Diesfeld and Ian Freckelton, ‘Mental Health Law and Therapeutic Jurisprudence’, in Ian Freckelton and Kate Peterson (eds), Disputes and Dilemmas in Health Law (Federation Press 2006) 91 (for a transnational perspective). 104 Michael L Perlin, ‘ “Everybody Is Making Love/Or Else Expecting Rain”: Considering the Sexual Autonomy Rights of Persons Institutionalized Because of Mental Disability in Forensic Hospitals and in Asia’ (2008) 83 Wash L Rev 481 (Perlin, Making Love); Michael L Perlin, ‘ “And My Best Friend, My Doctor, Won’t Even Say What It Is I’ve Got”: The Role and Significance of Counsel in Right to Refuse Treatment Cases’ (2005) 42 San Diego L Rev 735, 751; see also, Ian Freckelton, ‘Therapeutic Jurisprudence Misunderstood and Misrepresented: The Price and Risks of Influence’ (2008) 30 T Jefferson L Rev 575, 585–86. 105 David B Wexler, ‘Therapeutic Jurisprudence and Changing Concepts of Legal Scholarship,’ (1993) 11 Behav Sci and L 17, 21; see also eg David B Wexler, ‘Applying the Law Therapeutically’ (1996) 5 Appl and Prevent Psychol 179. 106 Michael L Perlin, ‘A Law of Healing’ (2000) 68 U Cin L Rev 407, 412 (Perlin, Healing); Michael L Perlin, ‘ “Where the Winds Hit Heavy on the Borderline”: Mental Disability Law, Theory and Practice, Us and Them’ (1998) 31 Loyola LA L Rev 775, 782.
perlin and szeli
416
Liberty and Security of the Person
Using TJ we ‘look at law as it actually impacts people’s lives’107 and assess law’s influence on emotional life and psychological wellbeing.108 One governing TJ principle is that ‘law should value psychological health, should strive to avoid imposing anti-therapeutic consequences whenever possible, and when consistent with other values served by law should attempt to bring about healing and wellness’.109 TJ supports an ethic of care.110 One of the central principles of therapeutic jurisprudence is a commitment to dignity.111 Professor Amy Ronner describes the ‘three Vs’: voice, validation, and voluntariness,112 arguing that: What ‘the three Vs’ commend is pretty basic: litigants must have a sense of voice or a chance to tell their story to a decision maker. If that litigant feels that the tribunal has genuinely listened to, heard, and taken seriously the litigant’s story, the litigant feels a sense of validation. When litigants emerge from a legal proceeding with a sense of voice and validation, they are more at peace with the outcome. Voice and validation create a sense of voluntary participation, one in which the litigant experiences the proceeding as less coercive. Specifically, the feeling on the part of litigants that they voluntarily partook in the very process that engendered the end result or the very judicial pronunciation that affects their own lives can initiate healing and bring about improved behavior in the future. In general, human beings prosper when they feel that they are making, or at least participating in, their own decisions.113
The question to be posed here is this: does article 14 promote TJ values? Does it encourage voice and does it lead to validation of individuals’ decisions? There have been prior inquiries into the relationship between TJ and the CRPD in general,114 and—while the relationship between TJ and article 14 specifically has not yet been explored—there has been extensive discussion in the TJ literature on the rights that article 14 CRPD seeks to protect.115. Our conclusion is that both paragraphs of article 14 are imbued with these values. First, the ‘right to liberty and security of person’ (article 14.1 (a)) is, without question, a TJ value.116 Over fifteen years ago, the late Professor Bruce Winick noted that, a therapeutic jurisprudence model of civil commitment would lead to ‘reforms in mental 107 Bruce J Winick, ‘Foreword: Therapeutic Jurisprudence Perspectives on Dealing with Victims of Crime,’ (2009) 33 Nova L Rev 535, 535. 108 David B Wexler, ‘Practicing Therapeutic Jurisprudence: Psychological Soft Spots and Strategies,’ in Daniel P Stolle, David B Wexler, and Bruce J Winick, Practicing Therapeutic Jurisprudence: Law as a Helping Profession (Carolina Academic Press 2006) 45. 109 Bruce Winick, ‘A Therapeutic Jurisprudence Model for Civil Commitment’ in Kate Diesfeld and Ian Freckelton (eds), Involuntary Detention and Therapeutic Jurisprudence: International Perspective on Civil Commitment, Ashgate 2003) 23, 26. 110 See eg Bruce J Winick and David B Wexler, ‘The Use of Therapeutic Jurisprudence in Law School Clinical Education: Transforming the Criminal Law Clinic’ (2006) 13 Clinical L Rev 605, 605–07. 111 See Bruce J Winick, Civil Commitment: A Therapeutic Jurisprudence Model (Carolina Academic Press 2005) 161. 112 Amy D Ronner, ‘The Learned-Helpless Lawyer: Clinical Legal Education and Therapeutic Jurisprudence as Antidotes to Bartleby Syndrome’ (2008) 24 Touro L Rev 601, 627; on the importance of ‘voice,’ see also Freckelton (n 104) 588. 113 Amy D Ronner, ‘Songs of Validation, Voice, and Voluntary Participation: Therapeutic Jurisprudence, Miranda and Juveniles’ (2002) 71 U Cin L Rev 89, 94–95; see generally, Amy D Ronner, Law, Literature and Therapeutic Jurisprudence (Carolina Academic Press 2010). 114 See eg Michael L Perlin, ‘ “Striking for the Guardians and Protectors of the Mind”: The Convention on the Rights of Persons with Disabilities and the Future of Guardianship Law’ (2013) 117 Penn St L Rev 1159 (Perlin, Striking); Perlin (n 97). 115 See sources cited at (nn 116–24). 116 On why TJ values do not and cannot undermine individual liberty values, see Astrid Birgden, ‘Therapeutic Jurisprudence and Offender Rights: A Normative Stance Is Required’ (2009) 78 Rev Jur UPR 43, 53.
perlin and szeli
Article 14
417
health law and practice that will both protect individual liberty and promote improved mental health and psychological well-being’.117 Recently, one of the co-authors of this chapter (Michael Perlin), writing with another co-author, concluded that: ‘therapeutic jurisprudence’s ultimate goal, in this area specifically, is to recognize the flaws in our perceptions and practices in order to create a better approach to achieving guaranteed rights and liberties for all persons’.118 In addition, TJ demands that persons not be ‘deprived of their liberty unlawfully or arbitrarily’ (article 14(1) (b)). From its earliest days, TJ has focused upon the ‘undue emphasis on deprivations of liberty associated with civil commitment of persons with mental illness’.119 As the late Professor Bruce Winick—one of the two ‘founding fathers’ of TJ—has written: Therapeutic jurisprudence considerations frequently will converge with many of the principles underlying international human rights protections for those with mental illness, such as the protection of liberty against arbitrary deprivation and a commitment to procedural fairness.120
There is no ‘TJ position’ on whether civil commitment needs to be abolished, but there is a robust TJ literature on how civil commitment hearings must be reshaped to avoid the unlawful or arbitrary use of state power at such hearings.121 Finally, with respect to the explicit obligation in paragraph 1(b) of article 14 whereby ‘the existence of a disability shall in no case justify a deprivation of liberty’ we believe that therapeutic jurisprudence firmly supports the view that this obligation does not require the abolition of the insanity defense or the incompetency status.122 Such abolition ‘deprives this population of authentic due process, participation in fair trials, and having a voice’,123 among the core elements of therapeutic jurisprudence.124
Winick (n 100) 572 (emphasis added). Michael L Perlin and Heather Ellis Cucolo, ‘ “Tolling for the Aching Ones Whose Wounds Cannot Be Nursed”: The Marginalization of Racial Minorities and Women in Institutional Mental Disability Law’ (2017) 20 J Gender, Race and Justice 431, 457 (emphasis added); see also, Emily R Murphy, ‘Paved with Good Intentions: Sentencing Alternatives from Neuroscience and the Policy of Problem-Solving Courts’ (2013) 37 Law and Psychol Rev 83, 117, characterizing the therapeutic jurisprudence framework as ‘a focus on empirically verifiable results with respect for due process protections for personal liberty and autonomy’. 119 Fred Cohen and Joel A Dvoskin, ‘Therapeutic Jurisprudence and Corrections: A Glimpse’ (1993) 10 NYL Sch J Hum Rts 777, citing Wexler, Putting Mental Health (n 102). 120 Winick (n 100) 544. 121 For an exhaustive consideration, see Bruce J Winick, ‘Therapeutic Jurisprudence and the Civil Commitment Hearing’ (1999) 10 J Contemp Legal Issues 37. On the therapeutic jurisprudence potential of a civil commitment hearing, see John J Ensminger and Thomas D Liguori, ‘The Therapeutic Significance of the Civil Commitment Hearing: An Unexamined Potential’ (1978) 6 J Psychiatry and L 5. 122 See Michael L Perlin, ‘ “God Said to Abraham/Kill Me a Son”: Why the Insanity Defense and the Incompetency Status Are Compatible with and Required by the Convention on the Rights of Persons with Disabilities and Basic Principles of Therapeutic Jurisprudence’ (2017) 54 Am Crim L Rev 477, 517: ‘I believe that TJ requires a robust and expansive insanity defense. It demands a reconsideration of policies that punish defendants for raising the defense, reject testimony as to the causal relation between mental disability and the commission of otherwise-criminal acts, and incarcerate “successful” insanity pleaders in maximum-security forensic institutions for far longer than the maximum sentence for the underlying crime, which is often a trivial one.’ 123 ibid at 483. 124 On due process and TJ, see Perlin, Making Love (n 104) 10, at fn 139. On fair trials and TJ, see Perlin, Healing (n 106) 421. On voice and TJ, see Michael L Perlin, ‘ “Wisdom Is Thrown into Jail”: Using Therapeutic Jurisprudence to Remediate the Criminalization of Persons with Mental Illness,’ (2013) 17 Mich St U J Med and L 343, 364: Ronner (n 112). 117 118
perlin and szeli
418
Liberty and Security of the Person
5. Paragraph 2 The most important controversy that has arisen with regard to paragraph 2 relates to its relationship to criminal law and procedure, an area that has not been the focus of substantial international human rights law scholarship (other than as it relates to procedures in the international criminal court).125 Thus, the questions (and some suggested answers) that arise in the context of criminal law are even more muddled. It is necessary to begin with some background, first on the insanity defense,126 and then on the incompetency status.127 Although there are a handful of American states and a few other nations that have abolished the insanity defense, it remains seen as a reflection of ‘the fundamental moral principles of our criminal law’,128 resting on ‘assumptions that are older than the Republic’129 and ‘beliefs about human rationality, deterrability and free will’,130 and as a bulwark of the law’s ‘moorings of condemnation for moral failure’.131 The insanity defense has been ‘a major component of the Anglo-American common law for over 700 years’.132 Rooted in Talmudic, Greek, and Roman history, its forerunners actually can be traced back over 3,000 years.133 The sixth century Code of Justinian explicitly recognized that the insane were not responsible for their acts, and also articulated the early roots of the temporary insanity and diminished capacity doctrines.134 By the ninth century, the ‘Dooms of Alfred’ acknowledged that an impaired individual—who could not ‘acknowledge or confess his offenses’—was absolved from personally making restitution.135 In pre-Norman England, the law similarly shifted reparations responsibility in the event that a ‘man fall out of his senses or wits, . . . and kill someone’.136 Writing about the defense recently, one of the co- authors (MLP) has said: 125 See eg Mac Darrow and Louise Arbour, ‘The Pillar of Glass: Human Rights in the Development Operations of the United Nations’ (2009) 103 Am J Int’l L 446, 481, discussing ‘the embryonic (at best) state of the scholarship’ in this area. There is some irony here in that, in recent constitutional cases involving the death penalty, the US Supreme Court has been more likely to use international human rights law norms in support of decisions curtailing the use of that penalty; see eg Michael L Perlin, ‘ “Yonder Stands Your Orphan with His Gun”: The International Human Rights and Therapeutic Jurisprudence Implications of Juvenile Punishment Schemes’ (2013) 46 Texas Tech L Rev 301, 301–03, discussing US Supreme Court’s use of international human rights law in Miller v Alabama, 132 S Ct 2455, 2475 (2012) (ruling on mandatory life without parole for homicide in juvenile cases); Graham v Florida 130 S Ct 2011, 2034 (2010) (ruling on life without parole for crimes other than homicide in juvenile cases), and Roper v Simmons 543 U.S. 551, 577 (2005) (ruling on the juvenile death penalty); see also, Beth Caldwell, ‘Twenty-Five to Life for Adolescent Mistakes: Juvenile Strikes as Cruel and Unusual Punishment’ (2012) 46 U SF L Rev 581, 599, focusing on the Court’s ‘greater willingness to consider international human rights standards and practices when assessing sentencing practices within the United States’. 126 See generally, Perlin and Cucolo (n 60) § 14-1.1, at §§ 14-4 to 14-10. 127 ibid § 13-12, at 13-4 to 13-7. 128 United States v Lyons, 739 F 2d 994 (5th Cir 1984) (Rubin, J dissenting). The majority opinion in Lyons is found at 731 F 2d 243 (5th Cir 1984), cert denied 469 U.S. 930 (1984). 129 ibid 739 F 2d at 995 (citing 1 Hale, The History of Pleas of the Crown 14–15 (1736)). 130 Richard Bonnie and Christopher Slobogin, ‘The Role of Mental Health Professionals in the Criminal Process: The Case for Informed Speculation’ (1980) 66 Va L Rev 427, 448. 131 John Monahan, Abolish the Insanity Defense—Not Yet,’ (1973) 26 Rutgers L Rev 719, 731. 132 See Robert Sadoff and Frank Dattilio, ‘Criminal Responsibility,’ in Eric Drogin et al (eds), Handbook of Forensic Assessment: Psychological and Psychiatric Perspectives (Wiley Press 2011) 121. 133 Jacques Quen, ‘The Insanity Defense: How Far Have We Strayed?’ (1995) 5 Cornell J L and Pub Pol’y 27. For an overview, dating back to the Code of Hammurabi, from a clinician’s perspective, see Daniel Greenfield, ‘Criminal Responsibility from a Clinical Perspective’ (2009) 37 J Psychiatry and L 7. 134 See Sadoff and Dattilio (n 132) 121. 135 Nigel Walker, Crime and Insanity in England (Edinburgh Univ Press 1968) 219. 136 Thorpe, Laws and Institutes of England (Additamenta 1840) 29.
perlin and szeli
Article 14
419
Perhaps no other question in criminal law goes to the heart of concepts of responsibility, blameworthiness, free will, and punishment as does the insanity defense. Throughout history, questions of a defendant’s responsibility for otherwise criminal acts have plagued legal systems and have raised seemingly intractable public policy questions, which, if anything, have only intensified with the passage of time. This history must be considered in the resolution of any and all insanity defense issues.137
Few principles are as firmly embedded in Anglo-American criminal jurisprudence as the doctrine that an ‘incompetent’ defendant may not be put to trial.138 The doctrine is traditionally traced to mid-seventeenth century England,139 with commentators generally focusing on: (1) the incompetent defendant’s inability to aid in his defence;140 (2) the parallels to the historic ban on trials in absentia;141 and (3) the parallels to the problems raised by defendants who refused to plead to the charges entered against them.142 Substantively, US jurisprudence in this area is controlled by the case of Dusky v United States,143 where the Court asked whether the defendant ‘has sufficient present ability to consult with his lawyer with a reasonable degree of rational understanding—and whether he has a rational as well as a factual understanding of the proceedings against him’.144 Procedurally, it is axiomatic that the conviction of an accused person who is mentally incompetent violates the due process clause, per Pate v Robinson.145 It is important to note that there is no connection between raising of this status and factual guilt.146 In short, the insanity defense has been part of the fabric of the law since (before) ‘time immemorial, as has the incompetency status been for at least. four hundred years. On the other hand, the official commentary to article 14 CRPD states that detention is ‘unlawful’ when it ‘is grounded in the combination between a mental or intellectual disability and other elements such as dangerousness, or care and treatment’.147 The commentary explains that: ‘[s]ince such measures are partly justified by the person’s disability, they are to be considered discriminatory and in violation of the prohibition of deprivation of liberty on the grounds of disability . . . prescribed by article 14’.148 Moreover, the General Perlin and Cucolo (n 60) § 14-1.1, at 14-10. Kathryn LaFortune and Robert Nicholson, ‘How Adequate Are Oklahoma’s Mental Health Evaluations for Determining Competency in Criminal Proceedings? The Bench and Bar Respond,’ (1995) 23 J Psychiatry and L 231, 232. 139 See Bruce Winick and Terry DeMeo, ‘Competency to Stand Trial in Florida’ (1980) 35 U Miami L Rev 31, 32 at fn 2. 140 See eg William Blackstone, Commentaries (9th edn, Clarendon 1783) 24; Matthew Hale, The History of the Pleas of the Crown (1847) 34. 141 This issue is discussed fairly fully in People v Berling 251 P 2d 1017 (Cal App 1953). 142 Until the late eighteenth century, if the court concluded that a defendant was remaining ‘mute of malice,’ it could order him subjected to the practice of peine forte et dure, the placing of increasingly heavy weights on the defendant’s chest to ‘press’ him for an answer. See eg Ralph Slovenko, ‘The Developing Law on Competency to Stand Trial,’ (1977) 5 J Psychiatry and L 165, 168–69. 143 144 145 362 U.S. 402 (1960). ibid. 383 U.S. 375, 385 (1966). 146 See Perlin (n 122) 489: ‘It also needs to be stressed that incompetency is a status, not a defense, and raising it is in no way a concession of factual guilt like invocation of the insanity defense,’ citing Criminal Justice Standards on Mental Health ch 7, pt IV (Am Bar Ass’n 2015). On the other hand, raising the insanity defence is a concession that the defendant committed the underlying act—see Jones v United States, 463 US 354, 363 (1983) (‘A verdict of not guilty by reason of insanity establishes two facts: (i) the defendant committed an act that constitutes a criminal offense, and (ii) he committed the act because of mental illness.’). 147 UN Secretary-General and High Commissioner for Human Rights, Human Rights Council, ‘Thematic Study by the Office of the United Nations High Commissioner for Human Rights on Enhancing Awareness and Understanding of the Convention on the Rights of Persons with Disabilities’ UN Doc A/HRC/10/48 (26 January 2009) para 48. 148 ibid. 137 138
perlin and szeli
420
Liberty and Security of the Person
Comments relating to article 14 state unequivocally that: ‘declarations of unfitness to stand trial and the detention of persons based on that declaration’ violate article 14149 and that ‘recognition of the legal capacity of persons with disabilities requires abolishing a defense based on the negation of criminal responsibility because of the existence of a mental or intellectual disability’.150 This view has been enthusiastically endorsed by Tina Minkowitz, president and founder of the Center for the Human Rights of Users and Survivors of Psychiatry and representative of the World Network of Users and Survivors of Psychiatry in the CRPD drafting process.151 In Minkowitz’s view, the insanity defense is contrary to article 12 CRPD ‘because it undermines the equal recognition of persons with disabilities before the law as individuals with mutual obligations towards others and an equal right to participate in defining and negotiating those obligations’.152 Faced with these pronouncements, Professor Christopher Slobogin then reasonably asks: Should the government nonetheless be barred, as the CRPD indicates, from enacting statutes that authorize preventively detaining and treating people with mental disability who are perceived to be dangerous to others or themselves? And if a person who commits an offense has a mental disability, may the criminal courts formally ignore that fact, as the CRPD seems to dictate, without violating the near-universal assumption that blameworthiness is the linchpin of criminal liability?153
Subsequently, speaking about the likely denouement if the incompetency to stand trial status were to be abolished, he concludes as follows: Abandoning the concept of incompetency, as the CRPD nonetheless seems to do, would permit decision-making that would denigrate both individual dignity and the autonomy principle itself. To take an extreme example, a person who understood nothing about his or her situation, which
149 CRPD Committee, ‘Statement on Article 14 of the Convention on the Rights of Persons with Disabilities (September 2014), available at: . The Committee has also criticized individual governments for maintaining procedures that permit a defendant to be deemed ‘unfit’ to stand trial and subsequently detained; see eg CRPD Committee, ‘Concluding Observations on the Initial Report of New Zealand’ UN Doc CRPD/C/NZL/CO/ 1 (31 October 2014) para 33. 150 UN Human Rights Council, ‘Thematic Study by the United Nation High Commission for Human Rights on Enhancing Awareness and Understanding on the Convention on the Rights of Persons with Disabilities’ UN Doc A/HRC/10/48 (26 January 2009) para 47, see also ibid para 48, which reads:
The Convention radically departs from this approach by forbidding deprivation of liberty based on the existence of any disability, including mental or intellectual, as discriminatory. Article 14, paragraph 1 (b), of the Convention unambiguously states that ‘the existence of a disability shall in no case justify a deprivation of liberty’. 151 See eg Tina Minkowitz, ‘Some Thoughts on the Insanity Defense’ (12 July 2014), available at: ; Tina Minkowitz, ‘Rethinking Criminal Responsibility from a Critical Disability Perspective: The Abolition of Insanity/Incapacity Acquittals and Unfitness to Plead, and Beyond’ (2014) 23 Griffith L Rev 434 (2014) (Minkowitz, Rethinking Responsibility). 152 Minkowitz, Rethinking Responsibility (n 151) 447. Interesting, elsewhere Minkowitz writes this: ‘Article 14 says nothing about prevention detention per se or detention for care and treatment per se, so long as any such grounds are not linked in legislation to the existence of a disability and so long as they are not designed or applied with discriminatory intent or impact towards persons with disabilities. A law providing for involuntary care and treatment for the general population that was predominantly applied in the mental health context would violate Article 14.’ Tina Minkowitz, ‘Prohibition of Compulsory Mental Health Treatment and Detention under the CRPD’ at 8, available at . 153 Christopher Slobogin, ‘Eliminating Mental Disability as a Legal Criterion in Deprivation of Liberty Cases: The Impact of the Convention on the Rights of Persons with Disability on the Insanity Defense, Civil Commitment, and Competency Law’ (2015–16) 40 Law and Psychol Rev 297, 300.
perlin and szeli
Article 14
421
might be the case with people who have a serious intellectual disability, should not be permitted to make decisions about that situation, with or without supportive personnel.154
Although the Committee has been silent on criminal law issues, the High Commissioner has taken the view that current legal approaches must be changed: In the area of criminal law, recognition of the legal capacity of persons with disabilities requires abolishing a defence based on the negation of criminal responsibility because of the existence of a mental or intellectual disability. Instead disability-neutral doctrines on the subjective element of the crime should be applied, which take into consideration the situation of the individual defendant. Procedural accommodations both during the pretrial and trial phase of the proceedings might be required in accordance with article 13 of the Convention, and implementing norms must be adopted.155
Professor Peter Bartlett, writing from a UK perspective, summarizes the salient issues well: The requirement that criminal law move away from engagement with mental disability is counter- intuitive. Usually, the argument has been that people with mental disabilities are already over- represented in criminal law generally and in the prison population in particular, in circumstances where their real responsibility for the crime at issue is at best questionable. Insofar as a move away from disability-based criminal law will reduce the scope of these defences, this problem will be exacerbated. If this is true in the United Kingdom, the perceived injustice is even more pronounced in other countries, where conditions of detention may be profoundly substandard, and where fewer legal protections (such as an effective system of legal aid) assist people with mental disabilities in the criminal justice system. The situation in countries that retain capital punishment is even more stark: if disability-based defences are removed without provision of equally extensive alternatives, more people will be executed who are doubtfully responsible for the crimes of which they are accused.156
In a recent law review article, one of the authors of this chapter (Michael Perlin) expressed the following observation: These Comments have been embraced by some members of the disability-rights community, and the abolitionist movement is growing. This position is wrongheaded in every possible way. If adopted, it will make a mockery of any modicum of fair-trial rights for the population in question, and will likely lead to torture of this population in the jails and prisons in which it will languish. The statement in the GCs—‘that declarations of unfitness to stand trial . . . is contrary to article 14 of the [CRPD] since it deprives the person of his or her right to due process and safeguards that are applicable to every defendant’—is the single most wrongheaded (and potentially destructive) statement uttered by any supporter of the CRPD since its initial drafting.157
In further support of this argument, in the same recent article, the same co-author focused on the ways that abolition of this status will further enhance the likelihood that factually innocent people (as asserting the incompetency status in no way is a concession of factual guilt of the underlying crime) will be convicted and imprisoned—likely for far longer than persons without mental disabilities for like offenses—and that factually guilty defendants will be robbed of their opportunities to make important choices such as choosing to knowingly, voluntarily, and intelligently entering into a plea bargain.158
ibid at 315. Bartlett (n 22) 776, quoting UN High Commissioner for Human Rights, ‘Annual Report’ UN Doc A/HRC/10/48 (26 January 2009) para 47. 156 157 158 Bartlett (n 22) 776. Perlin (n 122) 480. Perlin (n 122) 480–81. 154 155
perlin and szeli
422
Liberty and Security of the Person
All of this ‘will make a mockery of any modicum of fair-trial rights for the population in question’.159
5.1 Human Rights Guarantees The requirement that human rights guarantees be applied to the deprivation of liberty of disabled persons encompasses all those guarantees—and established case law—found in universal and regional human rights treaties.160 The application of such human rights guarantees entails an obligation on states parties to adapt their laws to the requirements of article 14(2) and even abolish or repeal conflicting legislation. The abolition of statutes that violate the right of liberty of persons, as this applies to disabled persons as described above, forces us to focus on what happens to persons with mental disabilities when they are imprisoned. A recent exhaustive report erases any shred of doubt that persons with mental disabilities are regularly brutalized and tortured in prison settings.161 Persons with mental disabilities are frequently and disproportionally the victims of violence and abuse inside correctional settings.162 The GC’s interpretation of article 14 will lead to more of this sort of violence and abuse.163 Beyond this, it is black-letter law that any piece of legislation must be read in pari materia. Statutes ‘must, to the extent possible, ensure that the statutory scheme is coherent and consistent’.164 A consideration of other articles of the CRPD—ones that mandate ‘[r]espect for inherent dignity’,165 ‘[f ]reedom from torture or cruel, inhuman or degrading treatment or punishment’,166 ‘[f ]reedom from exploitation, violence and abuse’,167 a right to protection of the ‘integrity of the person’,168 and the retention of any provisions ‘more conducive to the . . . rights of persons with disabilities’—makes it clear that any interpretation of article 14 that makes it more likely that factually innocent individuals will be convicted and incarcerated and which in turn makes it less likely that the individual’s trial will be ‘fair’ must be rejected.169 159 Perlin (n 122) 480; see also Gooding et al (n 60) 861: ‘Given articles 4(1)(f ) and 13, it seems premature to argue that the [CRPD] could not accommodate some kind of modified process for situations where a person cannot independently participate, instruct counsel, and so on. Further, it would be misguided (and counterproductive) to suggest therapeutic approaches are antithetical to rights-based efforts to secure equal recognition before the law.’. 160 See eg Arts 9–11 ICCPR; Art 5 ECHR; Art 7 American Convention on Human Rights. 161 Perlin (n 122) 506, citing Lea E Johnston, ‘Vulnerability and Just Desert: A Theory of Sentencing and Mental Illness’ (2013) 103 J Crim L and Criminology 147; Lea E Johnston, ‘Conditions of Confinement at Sentencing: The Case of Seriously Disordered Offenders’ (2014) 63 Cath U L Rev 625; and Jonathan D LeCompte, ‘When Cruel Becomes the Usual: The Mistreatment of Mentally Ill Inmates in South Carolina Prisons’ (2015) 66 SC L Rev 751. 162 Henry A Dlugacz, ‘Correctional Mental Health in the USA’ (2014) 10 Int’l J Prisoner Health 3, 10 (citing Steven K Hoge et al, ‘American Psychiatric Association:, Outpatient Services for the Mentally Ill Involved in the Criminal Justice System’ (2009)). 163 For a comprehensive discussion of how jail and prison staff regularly use ‘unnecessary, excessive, or malicious . . . force against prisoners with mental disabilities’ see United States: ‘Force Against Prisoners with Mental Illness’ (12 May 2015) Hum Rts Watch 4, available at: . See also, Perlin (n 54) 508–09 (discussing how this interpretation will likely lead to increases in prison suicides). 164 Statutes must be ‘taken, read, and construed together, each enactment in reference to the other, as though they were parts of one and the same law’—see Peraza v State, 467 S W 3d 508, 520 n 29 (Tex Crim App 2015) (quoting Jones v State 396 S W 3d 558, 561–62 (Tex Crim App 2013)). 165 166 167 168 Art 3(a) CRPD. ibid Art 15. ibid Art 16. ibid Art 17. 169 Perlin (n 122) 496; accordingly, see Meron Wondemaghen, ‘Testing Equality: Insanity, Treatment Refusal and the CRPD’ (2017)—Psychiatry, Psychol and L—(2018) Issue 2 174–85: ‘Adherence to Article 12 demands that persons with mental and psychosocial disabilities are recognised as free agents with legal capacity
perlin and szeli
Article 14
423
The contrary interpretation also ignores article 4(4) CRPD, which mandates that ‘[n]othing in the present Convention shall affect any provisions which are more conducive to the realization of the rights of persons with disabilities and which may be contained in the law of a state party or international law in force for that state’.170 There is no mention of article 4 in any of the literature that suggests—as Minkowitz and others have urged—that the CRPD requires the abolition of the insanity defense, the incompetency status, or both.171 Some of the above-mentioned issues have been addressed in Europe as well, under article 5 ECHR. Several cases decided by the ECtHR illuminate this tension.172 In Winterwerp v Netherlands, the Court found that in order to detain ‘persons of unsound mind’ in accordance with article 5(1)(e) ECHR, there must be a finding that the disorder requires confinement and the disorder must be diagnosed using objective medical expertise.173 The ECHR also found that it is essential for the person concerned to have access to a court and the opportunity to be heard either in person or, where necessary, through some form of representation.174 In Aerts v Belgium, the Court concluded that the ECHR provided a right to be held in an institution not destructive of the individual’s mental health.175 Professors Gostin and Gable note this case suggests that ‘persons with mental illness must be confined in a minimally therapeutic environment’.176 The ECtHR has also found that ordering detention in a psychiatric institution without prior medical opinion violates the ECHR, and particularly that mental disability must be of sufficient seriousness to justify deprivation of liberty177 and that individuals have a right, under article 5 ECHR, to initiate a review of their detention.178 In E v Norway, the ECtHR held that a delay of eight weeks violates the right to speedy review by a court.179 And in Megyeri v Germany, it found that in order for a periodic review of commitment to be effective, there might need to be procedural safeguards present. In the case at hand the ECtHR found a breach of the ECHR because no lawyer was assigned to represent the patient.180 There must also be judicial process involved in determining whether detention who may or may not choose to employ the defence of insanity to negate reasoning, not as a perpetual and continuous state, but solely at the time of the commission of a criminal act. It is concerning that the current calls for the abolition of the defence are making these choices for persons with mental disability, ironically engaging in the very assumptions the Convention stands to eliminate’. Art 4(4) CRPD. Perlin (n 122) 485. See also, Carole J Petersen, ‘Addressing Violations of Human Rights in Forensic Psychiatric Institutions: Philosophical and Strategic Debates, Remarks Before the American Society of International Law’ (2015) 109 American Society of International Law: Proceedings of the Annual Meeting 82 (expressing doubt that any legislature would adopt Minkowitz’s position, and concluding that it would be ‘more prudent to propose reforms to the current defenses, providing stronger safeguards and more regular review of detention orders for defendants who are either deemed unfit for trial or relied upon disability-based defenses’). 172 See generally, Michael L Perlin, ‘ “Abandoned Love”: The Impact of Wyatt v Stickney on the Intersection between International Human Rights and Domestic Mental Disability Law’ (2011) 35 Law and Psychol Rev 121, 132–33. 173 174 Winterwerp v Netherlands (1979) 2 EHRR 387 para 39. ibid. 175 176 Aerts v Belgium (1998) 29 EHRR 50. Gostin and Gable (n 5) 87–88. 177 Varbanov v Bulgaria, (2000) ECHR 457, discussed extensively in Krassimir Kanev, ‘State, Human Rights, and Mental Health in Bulgaria’ (2002) 21 NYL Sch J Int’l and Comp L 435. 178 Rakevich v Russia (2003) ECHR 558. 179 E v Norway (1990) 17 EHRR 30, 57–58; see also Gostin and Gable (n 5) 73–74. 180 Megyeri v Germany (1992) 15 EHRR 584, 590–92; see also, Kris Gledhill, ‘Human Rights Instruments and Mental Health Law: The English Experience of the Incorporation of the European Convention on Human Rights’ (2007) 34 Syracuse J Int’l L and Com 359, 367. 170 171
perlin and szeli
424
Liberty and Security of the Person
under article 5 is lawful.181 Moreover, ECHR case law imposes requirements on state authorities to protect the health of persons deprived of liberty182 and limits the period of detention of mentally ill prisoners during their time on remand.183 More recently, in Stanev v Bulgaria,184 the ECtHR found that the plaintiff, who had been partially deprived of his legal capacity and institutionalized without his consent, could proceed with his case.185 The plaintiff, who had never been evaluated to determine whether he was capable of living on his own, was placed in the guardianship of the institution’s director who was given authority to control the patient’s finances and identity papers and to determine his place of residence.186 The plaintiff alleged violations of his rights under the ECHR, including a violation of his right not to be subject to inhuman and degrading treatment, his right to liberty, his right to a fair hearing, his right to respect for home and private life and his right to an effective remedy.187 The ECtHR found multiple violations of his liberty rights under Article 5 ECHR, noting in particular the arbitrariness of his detention188 and the lack of independent judicial review of its lawfulness.189
5.2 Therapeutic Jurisprudence in Paragraph 2 Article 14(2) resonates with TJ values.190 The requirements that persons with disabilities be deprived of their liberty must be ‘on an equal basis with others,’ that they are ‘entitled to guarantees in accordance with international human rights law’ and that they be treated in compliance with the entire CRPD, ‘including by provision of reasonable accommodation’191 all speak to core TJ principles.192
X v United Kingdom (1981) 4 EHRR 188, 206–07. Keenan v United Kingdom (2001) 33 EHRR 913. 183 Kudla v Poland [GC] (2000) 135 EHRR 198, para 94. 184 185 186 Stanev v Bulgaria, (2010) ECHR 1182. ibid para 21. ibid paras 12, 16. 187 188 189 ibid paras 87–90. ibid paras 143–60. ibid at paras 168–78. 190 For a discussion of the implications of international human rights instruments— including, but not limited to, the CRPD—for forensic patients and correctional inmates in general, see Astrid Birgden and Michael L Perlin, ‘ “Where the Home in the Valley Meets the Damp Dirty Prison”: A Human Rights Perspective on Therapeutic Jurisprudence and the Role of Forensic Psychologists in Correctional Settings’ (2009) 14 Aggression & Violent Behav 256, 257–58; Astrid Birgden and Michael L Perlin, ‘ “Tolling for the Luckless, the Abandoned and Forsaked”: Therapeutic Jurisprudence and International Human Rights Law as Applied to Prisoners and Detainees by Forensic Psychologists’ (2008) 13 Legal and Criminological Psychol 231, 234–38; Michael L Perlin and Henry A Dlugacz, ‘ “It’s Doom Alone That Counts”: Can International Human Rights Law Be an Effective Source of Rights in Correctional Conditions Litigation?’ (2009) 27 Behav Sci and L 675, 691–94. 191 Art 14(2) CRPD. 192 On how questions of access to justice and equality serve as a foundation for TJ teaching, see Michael L Perlin and Alison J Lynch, ‘How Teaching about Therapeutic Jurisprudence Can Be a Tool of Social Justice, and Lead Law Students to Personally and Socially Rewarding Careers: Sexuality and Disability as a Case Example’ (2015) 16 Nevada LJ 209, 223; see generally, Michael L Perlin and John Douard, ‘ “Equality, I Spoke That Word/As If a Wedding Vow”: Mental Disability Law and How We Treat Marginalized Persons’ (2009- 09) 53 NYL Sch L Rev 9. On the relationship between TJ and international human rights law in general, see Michael L Perlin, ‘ “The Ladder of the Law Has No Top and No Bottom”: How Therapeutic Jurisprudence Can Give Life to International Human Rights,’ (2014) 37 Int’l J L and Psychiatry 535. On the relationship between TJ and the CRPD, see Perlin, Striking (n 114) and Gallagher and Perlin (n 101). On the relationship between TJ and reasonable accommodation principles in general, see Rose A Daly-Rooney, ‘Designing Reasonable Accommodations Through Co- Worker Participation: Therapeutic Jurisprudence and the Confidentiality Provision of the Americans with Disabilities Act’ (1994) 8 JL and Health 89. 181 182
perlin and szeli
Article 14
425
Conclusion While the broad contours of recognizing and guaranteeing the fundamental right to liberty and security of the person seem fairly clear, application of article 14 to restrictions of this right remains contentious and unresolved. As the CRPD closes out its first full decade in force, it remains to be seen how states parties will respond to directives from the Committee to reform their laws in unprecedented ways—and how the Committee will respond to ongoing resistance from states parties on these issues.
perlin and szeli
Article 15 Protection against Torture and Cruel or Inhuman or Degrading Treatment or Punishment . No one shall be subjected to torture or 1 to cruel, inhuman or degrading treatment or punishment. In particular, no one shall be subjected without his or her free consent to medical or scientific experimentation.
. States Parties shall take all effective legis2 lative, administrative, judicial or other measures to prevent persons with disabilities, on an equal basis with others, from being subjected to torture or cruel, inhuman or degrading treatment or punishment.
1. Introduction 2. Background and Travaux Préparatoires 3. Paragraph 1 3.1 ‘Free Consent’ and Personal Autonomy
3.1.1 Detention on Grounds of Unsoundness of Mind 3.1.2 Guardianship on Grounds of Mental Incapacity
3.2 Torture 3.2.1 3.2.2 3.2.3 3.2.4
Severe Mental or Physical Pain and Suffering Intent: Torture and Cruel, Inhuman, or Degrading Treatment State Involvement Prohibited Purpose
4.1.1 4.1.2 4.1.3 4.1.4 4.1.5
Psychiatric Drugs Given without Consent Sterilization and Other Reproductive Rights Violations Female Genital Mutilation Surgical Castration Electro Convulsive Therapy (ECT), Unmodified ECT, and Use of ECT on Children Seclusion, Caged Beds, and Other Restraints Oppressive and Coercive Treatment Regimes Failure to Give Adequate Medical Treatment or Pain Relief Conditions of Detention
3.3 ‘Medical or Scientific Experimentation without his or her free consent’ 4. Paragraph 2 4.1 Effective Preventive Measures
4.1.6 4.1.7 4.1.8 4.1.9
426 430 436 436 438 438 442 445 446 447 448 449 450 450 451 452 458 458 459 460 462 463 463
1. Introduction Article 15 prohibits torture and cruel, inhuman or degrading treatment or punishment (CIDTP), acts which have been prohibited and regulated extensively before the advent of the CRPD. As Kanter comments:1 1 Arlene Kanter, The Development of Disability Rights under International Law: From Charity to Human Rights (Routledge 2014) 159–200, 159; see also János Fiala-Butora, ‘Disabling Torture: The Obligation to Investigate Ill-treatment of Persons with Disabilities’ (2013) 45 Columbia Human Rights Law Review 214.
fennell
Article 15
427
The final language tracks the language of the Universal Declaration of Human Rights (UDHR), the prohibitions against torture and ill-treatment in the International Covenant on Civil and Political Rights (ICCPR) and the Convention against Torture (CAT) as well as the regional European Convention on Human Rights (ECHR) the American Convention on Human Rights and the African Charter of Human and Peoples’ Rights.
These provisions prohibit in absolute terms torture or CIDTP, irrespective of the circumstances and the victim’s behaviour.2 Torture is also a crime against humanity, punishable under the Statute of the International Criminal Court (ICC).3 Like article 7 ICCPR, article 15 CRPD is jus cogens, a peremptory norm which is non-derogable and cannot be reserved.4 There can be no justification for any forms of torture or inhuman or degrading treatment. As will be demonstrated below, the application of article 15 CRPD by the Committee on the Rights of Persons with Disabilities (CRPD Committee) must be understood in the context of the jurisprudence of these other international entities (whether international tribunals, standing human rights courts or human rights treaty bodies). Article 15(1) adopts verbatim the language of article 7 ICCPR and provides that ‘no one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment’. In particular, no one shall be subjected without his free consent to medical or scientific experimentation. Article 15(2) deals with preventive measures, requiring states to take ‘all effective legislative, administrative, judicial or other measures to prevent persons with disabilities, on an equal basis with others, from being subjected to torture or cruel, inhuman or degrading treatment or punishment’. This provision mirrors article 2 of the UN Convention Against Torture (CAT), which obliges each state party to take actions that reinforce the prohibition through legislative, administrative, or judicial actions that must, in the end, be effective in preventing torture and CIDTP.5As the ICTY put it in ICTY Prosecutor v Furundžija: The prohibition against torture is particularly stringent and sweeping. States are obliged not only to prohibit and punish torture, but also to forestall its occurrence: it is insufficient merely to intervene after the infliction of torture, when the physical or moral integrity of human beings has already been irremediably harmed. Consequently, States are bound to put in place all those measures that may pre-empt the perpetration of torture.6
Whether torture or CIDTP is inflicted by a state official or a private party, the state has a positive duty to take effective measures to protect the rights of people with disabilities, to prevent torture or CIDTP, and to carry out an official investigation which is capable of identifying those responsible and leading to their punishment.7 In Furundžija the ICTY held that this positive duty will be breached by: (i) failure to adopt the national measures
2 Arts 2(2) and (3) UN Convention against Torture and Cruel, Inhuman or Degrading Treatment or Punishment (CAT); Selmouni v France (2000) 29 EHRR 403 para 95. 3 Rome Statute of the International Criminal Court (ICC), Arts 5(1)(b), 7(1)(f ), and 7(2)(e). 4 HRCtee, ‘General Comment No 24’ UN Doc CCPR/C/21/Rev 1/Add 6 para 10 (4 November 1994); see also ICTY Prosecutor v Furundžija Trial Chamber Judgment (10 December 1998) paras 153–54. 5 CAT Ctee, ‘General Comment No 2 Implementation of Article 2 by States Parties’ UN Doc CAT/C/GC/ 2 (24 January 2008) para 2. 6 ibid para 148. 7 Soering v United Kingdom (1989) 11 EHRR 439. In Assenov v Bulgaria (1999) 28 EHRR 652, para 102, the Strasbourg Court held that ‘where an individual raises an arguable claim that he has been seriously ill-treated by the police or other such agents of the State unlawfully and in breach of Article 3, that provision, read in conjunction with the State’s general duty under Article 1 of the Convention to ‘secure to everyone
fennell
428
Protection against Torture and Cruel or Inhuman or Degrading Treatment
necessary for implementing the prohibition, and (ii) the maintenance in force or passage of laws which are contrary to the prohibition.8 Moreover states are under a positive duty to introduce specific criminal offences of torture and CIDTP, and efficient criminal law provisions enabling these to be enforced.9 The UN Human Rights Committee’s General Comment on article 7 ICCPR requires states to afford all necessary protection through legislative and other means against any acts prohibited by article 7, whether inflicted by persons acting in their official capacity or in a private capacity.10 This was one of the main reasons the CRPD drafters followed the ICCPR rather than the CAT wording, but, as will be explained below, by the time the CRPD came into force, the CAT was being interpreted as applying to acts committed by private parties.11 Lord describes the text that emerged from the drafting process as ‘a relatively sparse provision’, which ‘adds little to existing human rights law on the prohibition against torture, at least if read apart from other CRPD provisions that most certainly expand its meaning and intended application’.12 Nevertheless, as Lord also points out, and as other commentators are generally agreed, article 15 must be read in the context of the general principles in article 3 CRPD: respect for individual human dignity; freedom from discrimination on the basis of disability; and the rights to autonomy, independence, and equality.13 Also important are the duties of states parties under article 5(1) CRPD to
within their jurisdiction the rights and freedoms defined in . . . [the] Convention’, requires by implication that there should be an effective official investigation. This investigation, as with that under Article 2, should be capable of leading to the identification and punishment of those responsible. In Z v United Kingdom (2001) 34 EHRR 97 at para 73, the Court held that Art 3, requires states to take measures designed to ensure that individuals within their jurisdiction are not subjected to torture or inhuman or degrading treatment, including such ill-treatment administered by private individuals. These measures should provide effective protection, in particular, of children and other vulnerable persons and include reasonable steps to prevent ill-treatment of which the authorities had or ought to have had knowledge. Furundžija case (n 4) para 148, based on Soering v United Kingdom (1989) 11 EHRR 439. Art 4 of CAT requires states to take effective measures to prevent torture and other cruel, inhuman, or degrading treatment or punishment from being practised within their jurisdiction. See also in the disability context the decision of the European Court of Human rights in Bures v Czech Republic [2012] ECHR 1819 para 81, and in the policing context Cestaro v Italy Judgment of 7 April 2015 [2015] ECHR 352 paras 231 and 243–46. 10 HRCtee, ‘General Comment 20 Article 7 General comment No 20: Article 7 (Prohibition of Torture, or other Cruel, Inhuman or Degrading Treatment or Punishment)’ UN Doc HRI/GEN/1/Rev.9 (Vol. I) (27 May 2008) para 2. 11 Interim Report of the UN Special Rapporteur on Torture Manfred Nowak UN Doc A/63/175 (28 July 2008) para 51, where Mr Nowak said that the prohibition against torture relates not only to public officials, such as law enforcement agents in the strictest sense, but may apply to doctors, health professionals, and social workers, including those working in private hospitals, other institutions, and detention centres. See also General Comment No 2 (2008) of the Committee against Torture on the implementation of article 2 of the Convention UN Doc CAT/C/GC/2 (24 January 2008) para 17. This point had also been emphasized in Special Rapporteur Nowak’s January 2008 Report to the Human Rights Council UN Doc A/HRC/ 7/3 (15 January 2008) para 31. Also in Report of the Special Rapporteur on Torture, UN Doc A/HRC/22/ 53 (1 February 2013) para 24, Juan E Mendez re-emphasised that ‘As underlined by the Committee against Torture, the prohibition of torture must be enforced in all types of institutions and States must exercise due diligence to prevent, investigate, prosecute and punish violations by non-State officials or private actors.’ See also the Committee on the Elimination of Discrimination against Women in da Silva Pimentel v Brazil Communication No 17/2008, para 7.5, and the Inter-American Court of Human rights in Ximenes Lopes v Brazil (Series C) No 149 (2006) paras 103, 150. 12 Janet E Lord, ‘Shared Understanding or Consensus Masked Disagreement? The Anti-Torture Framework in the Convention on the Rights of Persons with Disabilities’ (2010–11) 33 Loy L A Int’l & Comp Law Rev 27, 41. 13 ibid 43; Kanter (n 1) 159. 8 9
fennell
Article 15
429
secure to people with disabilities equality before the law and equal protection of the law, as well as under 5(2) to ‘take all appropriate steps to ensure that reasonable accommodation is provided’. Article 15 CRPD rights overlap with rights under other CRPD articles, including the right to legal capacity on an equal basis with others under article 12; the right to liberty and security under article 14; the right to protection against violence, exploitation, and abuse under article 16; the right to physical and mental integrity under article 17; and the right to health care on an equal basis with others and based on informed consent under article 25. As Kanter comments: ‘even if certain polices, practices, conduct or conditions do not constitute a violation of article 15, they may violate one of the other articles of the CRPD’.14 The CRPD is universally described as representing a ‘new paradigm’ in human rights protection of persons with disability, based on an absolute prohibition of involuntary detention and non-consensual treatment of persons with disabilities. The previous human rights paradigm, which the new paradigm seeks to replace, is reflected in a sophisticated body of case law of the European Court of Human Rights (ECtHR), which accepts that people can be detained on grounds related to mental or psychosocial disability, as long as this is subject to substantive and procedural safeguards, including rights of challenge. Quinn describes this evocatively as ‘an ever more perfect and safeguarded process of loss’.15 The new paradigm rejects clinical power to detain and treat without consent. The old paradigm accepts as legitimate the parens patriae power of the state over people with mental disabilities, as well as police power to detain people with mental disabilities where necessary to prevent danger to the public.16
Kanter (n 1) 160. Gerard Quinn ‘Liberation, Cloaking Devices and the Law: A Personal Reflection on the Law and Theology of Article 12 of the UN CRPD’ (Rights & Enforcement— The Next Steps. BCNL Conference, Sofia, 16 October 2013), available at: . 16 Old paradigm rights are exemplified in the European Agency for Fundamental Rights survey Involuntary Placement and Involuntary Treatment of Persons with Mental Health Problems June 2012, available at: ; Peter Bartlett, ‘The UN Convention on the Rights of Persons with Disabilities and Mental Health Law’ (2012) 75 Modern Law Review, 752–78; Peter Bartlett, ‘Implementing a Paradigm Shift: Implementing the Convention on the Rights of Persons with Disabilities in the Context of Mental Disability Law’ in Centre for Human Rights and Humanitarian Law, Torture in Healthcare Settings: Reflections on the Special Rapporteur on Torture’s 2013 Thematic Report (American University Washington College of Law 2014) 169–81; Philip Fennell and Urfan Khaliq, ‘Conflicting or Complementary Obligations? The UN Disability Rights Convention, the European Convention on Human Rights and English Law’ (2011) 6 European Human Rights Law Review 662–74; János Fiala-Butora, ‘Disabling Torture: The Obligation to Investigate Ill-treatment of Persons with Disabilities’ (2013) 45 Columbia Human Rights Law Review 21; Tina Minkowitz, ‘The United Nations Convention on the Rights of Persons with Disabilities and the Right to be Free from Non-Consensual Psychiatric Interventions’ (2006–07) 34 Syracuse J Int’l L & Com 405; Tina Minkowitz, ‘A Response to the Report by Juan E Méndez, Special Rapporteur on Torture, Dealing with Torture in the Context of Health Care, as it Pertains to Non-consensual Psychiatric Interventions’ in Centre for Human Rights and Humanitarian Law, Torture in Healthcare Settings: Reflections on the Special Rapporteur on Torture’s 2013 Thematic Report (American University Washington College of Law 2014) 227–46. Minkowitz describes how the ‘new paradigm’ effectively came together at the Working Group on the Convention in January 2004, see Tina Minkowitz, ‘CRPD and Transformative Equality’ (2017) 13(1) International Journal of Law in Context 77–86. 14
15
fennell
430
Protection against Torture and Cruel or Inhuman or Degrading Treatment
2. Background and Travaux Préparatoires Lord notes that the consensus text masks the ‘shared understanding and outstanding disagreement’ that characterized the drafting process.17 The origins of the linkages between article 15 and other CRPD rights arise from the key issue for debate during the drafting process, namely whether involuntary hospitalization and treatment should be brought within the absolute prohibition of the anti-torture provision. There were two broad groupings. On one side were the disability rights NGOs (the World Network of Users and Survivors of Psychiatry (WNUSP) and the International Disability Caucus (IDC)). Their goals included (a) an absolute prohibition against all forms of involuntary detention based in whole or in part on disability and; (b) recognition that all non-consensual treatment should be classed as torture or cruel, inhuman, or degrading treatment. Their policy goal was based on the idea that regimes of legal powers based on involuntary detention and treatment create a fertile breeding ground for human rights abuses, no matter how many procedural safeguards they might have. On the other side of the debate were other organizations and most states (including the EU), who did not wish to bring these practices within the scope of the absolute and unconditional prohibition of (what is now) article 15.18 The Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities (Hereafter the Ad Hoc Committee) held eight sessions between July 2002 and December 2006. At the first of these the Committee had before it a working paper from Mexico including a draft Convention, draft article 9 of which was a loosely drafted provision whereby ‘states parties recognize that persons with disabilities are particularly vulnerable to different forms of violence, as well as torture and other cruel, inhumane or degrading treatment or punishment, in public and private spheres. Therefore, states shall guarantee respect for the dignity and integrity of persons with disabilities.’19 The second Ad Hoc Committee session received a report from America’s regional seminar held in Quito, Ecuador in April 2003, which recommended amending the Mexico draft to recognize that persons with disabilities were particularly vulnerable to exploitation as well as torture and CIDT and to add a requirement that states should guarantee security as well as respect for dignity and integrity of person.20 An expert group meeting held in Bangkok in June 2003 suggested that the non-derogable right to freedom from cruel, inhuman, or degrading treatment could be ‘drawn on in relation to forced intervention, and institutionalization’, an early indication of ‘new paradigm’ thinking.21 At the second session the Committee established a working group consisting of twenty-seven representatives of states, twelve representatives from NGOs and one representative from 18 Lord (n 12) 43. Kanter (n 1) 180. Ad Hoc Committee, 29 July–9 August 2002 Comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities Working paper by Mexico UN Doc A/AC.265/WP.1 (2002), available at: (accessed 20 October 2017). 20 Session 2 Ad Hoc Committee New York, 16–27 June 2003 Ad Hoc Committee Report UN Doc A/58/ 118 & Corr 1 ( 3 July 2003); Ferrajolo, J Article 34 (Committee on the Rights of Persons with Disabilities), in Valentina Della Fina, Rachele Cera, Giuseppe Palmisano (eds), The United Nations Convention on the Rights of Persons with Disabilities (Springer 2017) 607–34, at 611. 21 Bangkok recommendations on the elaboration of a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities, in UN Doc A/AC265/2003/CRP/ 10 (2003) para 29(c). 17 19
fennell
Article 15
431
a national human rights organization (the South African Human Rights Commission) to prepare a draft text which would form the basis of state negotiations.22 According to the representative of the WNUSP, Tina Minkowitz, it was at this Working Group meeting in January 2004 that the new paradigm really began to crystallize.23 As Degener and Begg put it: As well as the Mexican and Venezuelan drafts, the Working Group now had draft conventions from China, the European Union and India, as well as a draft submitted by the Chair of the Committee and a draft submitted by a regional meeting of national human rights institutions in Bangkok.24
The EU draft was very much aligned with the old paradigm. The issue was dealt with under draft article 7 under the general heading of autonomy. This did not mention torture, but required prohibition and prevention of CIDT of persons with disabilities, particularly in situations of forced intervention or institutionalization. The assumption was that compulsory detention and treatment without consent were legitimate as long as carried out in accordance with a procedure prescribed by law and subject to safeguards. States were to take appropriate measures to protect people with disabilities from all forms of physical or mental violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation.25 The Bangkok Draft, produced by the regional workshop held in Bangkok In October 2003,26 dealt with torture and CIDT in draft article 12(1), providing that: No person with disability shall be subjected to torture or cruel, inhuman or degrading treatment or punishment. In particular, no one shall be subjected without his or her free consent to medical or scientific experimentation [or intervention].
The proposal was that the prohibition would potentially extend to all interventions without consent, not just medical or scientific experimentation, and throughout the Ad Hoc Committee proceedings debate would rage around those words in square brackets. Draft article 12(4) was an early forerunner of article 15(2), placing a positive duty on states to take all appropriate legislative, administrative, social and educational measures to protect persons with disabilities, in particular, women and children with disabilities, from all forms of physical or mental violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation, including sexual abuse. Two alternative versions of draft article 12(2) were put forward in the Bangkok draft. The first adopted a relatively conservative ‘old paradigm’ approach, providing for the continuation of proxy consent: ‘Where any person with disability is unable to give free and informed consent, no intervention shall occur unless a form of consent is given on their behalf by a duly authorized authority.’ The more radical alternative version of draft Ad Hoc Committee Report UN Doc A/58/118 & Corr 1 (3 July 2003) para 15.1. Tina Minkowitz, ‘CRPD and Transformative Equality’ (2017) 13 International Journal of Law in Context 77–86. 24 Theresia Degener and Anne Begg, ‘From Invisible Citizens to Agents of Change: A Short History of the Struggle for the Recognition of the Rights of Persons with Disabilities at the United Nations’ in Fina et al (n 20) 1, 20. 25 EU Proposal for the text of an International Convention on the Full and Equal Enjoyment of all Human Rights and Fundamental Freedoms by Persons with Disabilities, available at: (accessed 20 October 2017). 26 Proposed Elements of a Comprehensive and Integral international Convention on the Protection and Promotion of the Rights and Dignity of persons with Disabilities October 2003, available at: . 22 23
fennell
432
Protection against Torture and Cruel or Inhuman or Degrading Treatment
article 12(2) stipulated that ‘everyone has the right not to be subjected to forced or coerced interventions of a medical nature or otherwise, aimed at correcting, improving, or alleviating any actual or perceived impairment’.27 This latter formulation would not find its way into the final text of the Convention, despite the fact that its inclusion in the anti- torture provision was a key aim of the International Disability Caucus. Degener and Begg describe how the ‘Working Group was able to complete a text in two weeks because . . . it focused on concluding a text which had the widest possible support, and by reflecting any major disagreements in footnotes to the text.’28 Draft article 11 of the new draft text dealt with torture and CIDT stated that: 1. States Parties shall take all effective legislative, administrative, judicial, educational or other measures to prevent persons with disabilities from being subjected to torture or cruel, inhuman or degrading treatment or punishment. 2. In particular, States Parties shall prohibit, and protect persons with disabilities from, medical or scientific experimentation without the free and informed consent of the person concerned, and shall protect persons with disabilities from forced interventions or forced institutionalization aimed at correcting, improving or alleviating any actual or perceived impairment.29
The differences of opinion masked by the consensus text were flagged up in this footnote: Members of the Working Group had differing opinions on whether forced intervention and forced institutionalization should be dealt with under ‘Freedom from torture’, or under ‘Freedom from violence and abuse’, or under both. Some members also considered that forced medical intervention and forced institutionalization should be permitted in accordance with appropriate legal procedures and safeguards.30
During the Working Group discussion Canada recommended that the question of forced interventions should be removed from the provision on torture to a separate article or to the provision on health, and that the prohibition should be qualified to allow intervention in the best interests of the person subject to a procedure prescribed by law and subject to legal safeguards. In this they were supported by Japan, Ireland, Morocco, Slovenia, Sweden, and Colombia. China thought the prohibition would be better dealt with under draft article 12 on freedom from violence and abuse. The European Disability Forum strongly supported the prohibition of forced interventions and institutionalization in both draft articles 11 and 12. The WNUSP maintained that ‘institutionalization does not belong in an article on health and that it needs to be acknowledged as a form of torture, inhuman and degrading treatment’ and moreover that ‘the distinction between interventions that are justified as being for so-called “therapeutic” purposes and those for more punitive purposes is false’.31 Degener and Begg describe how close the process came to being derailed in the third session of the Ad Hoc Committee (24 May–4 June 2004) where, ‘rather than focus on the key issues identified by the Working Group in its annotations’, delegations proposed amendments to every part of the text, so that ‘by the end of the meeting the 25 page 28 ibid Art 12(2). Degener and Begg (n 24) 21. Report of the Working Group to the Ad Hoc Committee UN Doc A/AC265/2004/WG 1 (2004) Annex 1 at 26–27. 30 ibid 27. 31 Daily Summary related to Draft Article 11 Freedom from Torture or Cruel, Inhuman or Degrading Treatment or Punishment (14 January 2004), Prepared by Landmine Survivors Network, available at: . 27 29
fennell
Article 15
433
Working Group Draft had ballooned into a 60 page document that was so heavily bracketed that it was, in places, virtually unreadable’.32 The EU and China wished to remove from paragraph 11(2) of the Working Group text the words ‘and shall protect persons with disabilities from forced interventions or forced institutionalization aimed at correcting, improving or alleviating any actual or perceived impairment’.33 This remained a subject of vigorous debate throughout the discussions of the Ad Hoc Committee. At the fourth session the EU, supported by the Netherlands, again proposed removing the protection against forced intervention and forced institutionalization.34 The discussion by the states representatives focused primarily on this issue and a proposal from Mexico recommending the use of the monitoring mechanism of the Optional Protocol of the Convention against Torture. New Zealand supported the EU view that forced institutionalization should be considered illegal, save in exceptional circumstances, must not be based solely on disability, and must be subject to safeguards. These exceptional circumstances should only apply to involuntary treatment, which is a sub-set of forced institutionalization, and must be prescribed by law, not be based solely on disability and subject to legal safeguards.35 The EU position was also supported by Canada, Mexico, China, India, Thailand, and Malaysia.36 When the meeting on draft article 11 was opened to NGO delegates, the International Disability Caucus (IDC) supported the Mexican proposal to refer to other human rights instruments to assist in monitoring obligations under this article. At the fifth session the Committee conducted discussions on draft articles 7–15, during which draft article 11 was amended to introduce wording based on article 7 ICCPR. The report noted that several delegations had pointed out that draft article 11 ‘lacked mention of the important and absolute prohibition of the use of torture, as contained in other human rights treaties’.37 The opening words of article 7 ICCPR were initially amended to be more disability- specific by replacing ‘no-one’ with the words ‘no person with disabilities’. It was also agreed to add the first phrase from paragraph 2 of the Working Group’s text, so that the paragraph accurately mirrored article 7 ICCPR. The new text of draft article 11(1), therefore, read: No person with disabilities shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment. In particular, states parties shall prohibit, and protect persons with disabilities from, medical or scientific experimentation without the free and informed consent of the person concerned.38
32 Degener and Begg (n 24) 21; Report of the third session of the Ad Hoc Committee UN Doc A/AC265/ 2004/5 (2004). 33 ibid. 34 Contributions submitted by Governments in electronic format at the Fourth Session Proposed Modifications to Draft Article 11, available at: . 35 ibid. 36 ‘Daily summary of discussions related to Article 11 (Freedom from Torture or Cruel, Inhuman or Degrading Treatment or Punishment)’, Fourth session of the Ad Hoc Committee—Daily Summary by Landmine Survivors Network Vol 5 No 4 (26 August 2004), available at: . 37 Report of the Ad Hoc Committee fifth session UN Doc A/AC265/2005/2 (24 January–4 February 2005) para 36. 38 ibid.
fennell
434
Protection against Torture and Cruel or Inhuman or Degrading Treatment
The final text of article 15(1) replaced the words ‘no person with disability’ with the words ‘no-one’, since article 15(1) must be read in the context of article 1 CRPD, which states the purpose of the Convention as being ‘to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity’. The next substantial discussion of torture and CIDT took place at the seventh session.39 The Chair had produced a Working Text, with provisions in the positions they would occupy in the Convention as finally adopted.40 Article 15(2) was as finally adopted. Paragraph (1) remained subject to significant debate until the last possible minute. The IDC, which included the WNUSP, urged the reinsertion into paragraph (1) of a prohibition on interventions aimed at correcting, improving or alleviating any actual or perceived impairment without free and informed consent, and also the addition of an extra sub-paragraph (3) providing that ‘every person with a disability has the right to have his or her physical, mental and moral integrity respected’. The principal aim of these provisions was to outlaw electro-convulsive therapy and neuroleptic drugs, which according to the IDC, ‘paralyze the will and destroy human initiative’.41 Mental Disability Rights International (MDRI) also urged the merger of the right to integrity with the anti-torture provision in article 15, along the lines of the right to humane treatment in article 5 of the American Convention on Human Rights (ACHR), which includes both sets of guarantees as follows: 1 . Every person has the right to have his physical, mental, and moral integrity respected. 2. No one shall be subjected to torture or to cruel, inhuman, or degrading punishment or treatment. All persons deprived of their liberty shall be treated with respect for the inherent dignity of the human person.42
The WNUSP, IDC, and MDRI all wanted the draft anti-torture provision to be modelled specifically on article 5 ACHR and to include language in the draft torture provision prohibiting ‘unwanted medical and related interventions as a form of torture or cruel, inhuman or degrading treatment or punishment . . . and prohibiting any kind of confinement based in whole or in part on disability’.43 It is important to understand the relationship with article 14 CRPD and the circumstances in which detention in breach of article 14 might amount to cruel, inhuman or degrading treatment (CIDT) contrary to article 15, as well as the relationship with articles 17 and 25, and the circumstances where treatment without consent might amount to torture or CIDT. Article 14 prohibits deprivation of liberty based on disability, and the provision was hotly debated during the negotiating process, with strong efforts being 39 Seventh Session of the Ad Hoc Committee (16 January–3 February 2006), available at: . The Sixth session of the Ad Hoc Committee (1–12 August 2005) focused on Articles 15–25 of the Working Group Draft, and there was no discussion of the anti-torture provision Report of the Ad Hoc Committee sixth session UN Doc A/60/266 (17 August 2005). 40 Seventh Session of the Ad Hoc Committee 16 January–3 February 2006, available at: ; Comments, proposals, and amendments submitted electronically, available at: . Chair’s Working Text for the seventh session of the Ad Hoc Committee, available at: . 41 Comments, proposals and amendments submitted electronically Intervention of the International Disability Caucus para 2, available at: . 42 43 ibid, Intervention of Mental Disability Rights International. ibid, see also Lord (n 12) 48.
fennell
Article 15
435
made to outlaw any detention, which was in any way based on the existence of a disability. At first, the strategy was to bring detention on grounds of disability under the umbrella of an absolute ban on torture and CIDT in article 15. When this was not successful, the focus shifted to securing that article 14 would in effect provide an absolute ban on any detention linked to disability. A significant number of states (including Australia, Canada, China, New Zealand, South Africa, Uganda, and the European Union)44 supported deprivation of liberty based on disability being permitted, when coupled with other grounds. At the seventh session of the Ad Hoc Committee Japan, supported by China, sought to amend the text to read that ‘in no case shall the existence of a disability “solely or exclusively” justify a deprivation of liberty’.45 The proposed insertion of ‘solely or exclusively’ was rejected.46 A similar campaign was waged by the IDC to move the protections on mental and physical integrity from article 17 to article 15. The IDC wanted the wording from the ACHR whereby ‘every person has the right to have his physical, mental and moral integrity respected’ to be placed in article 15, along with the wording of draft article 17(2) that ‘states parties shall protect persons with disabilities from forced interventions or forced institutionalization aimed at correcting, improving or alleviating any actual or perceived impairment’.47 At the eighth session the IDC firmly maintained this position, which ‘would allow us to address a broad category of human rights violations that we commonly experience’.48 Referring to the new paradigm, the IDC reaffirmed that in no case could they accept: language in the Convention that takes an equivocal position on forced interventions or suggests that the right to respect for integrity of the person can ever be legitimately compromised . . . In this article we are making the paradigm shift from seeing people with disabilities as the subjects of medical expertise, to respecting us in all our diversity as equal members of society whose pain is acknowledged and whose contributions and inherent worth are valued.49
The Chair’s text of article 17 still had in square brackets a paragraph placing an obligation of states to ‘ensure that involuntary treatment of persons with disabilities was minimized through the active promotion of alternatives, undertaken only in exceptional circumstances in the least restrictive setting, in accordance with procedures prescribed by law, and subject to appropriate safeguards.’ The IDC urged the deletion of this clause because it was ‘nothing but a derogation of the right to free and informed consent, based on disability’ and continued to maintain that there should never be any exception for
44 Fourth Session comments submitted electronically on Article 14, available at: . See also report of the Co-ordinator to the Fifth Session. For detailed discussion on the Union’s role in the negotiation process, see Grainne De Búrca, ‘The European Union in the Negotiation of the UN Disability Convention’ (2010) 35 European Law Review 174. 45 Seventh Session Comments and Proposals Submitted Electronically on Article 14 Liberty and Security of the Person, available at: . 46 8th Session Final report of the Ad Hoc Committee eighth session UN Doc A/61/611 (14–25 August and 5 December 2006). Also referred to in Interim Report of the UN Special Rapporteur on Torture Manfred Nowak UN Doc A/63/175 (28 July 2008) para 64. 47 Comments on Article 17 at the Seventh Session, available at: . 48 See (n 47); IDC, ‘A Way Forward Respecting Human Dignity’, available at: . 49 ibid.
fennell
436
Protection against Torture and Cruel or Inhuman or Degrading Treatment
forced interventions, and so there should be no need for safeguards.50 Degener and Begg describe how at the final meeting: The Committee was close to agreeing a compromise . . . —to retain mention of safeguards, but without specifically mentioning forced interventions. But time ran out before all delegations could be convinced. An alternative text, containing only a short one-sentence principle on the right to physical and mental integrity was put forward by the International Disability Caucus. Consensus quickly coalesced around it, and given the lack of time to consider anything more complicated, the rest of the article was discarded.51
The IDC proposals failed to win enough support for physical and mental integrity and involuntary institutionalization to be included in the final draft of article 15. Institutionalization is dealt with in article 14 on the right to liberty and security, while issues relating to incapacity and substitute decision-making are covered by article 12. The protections in relation to treatment without consent are now contained in article 17 and article 25, which sets out the right to the highest attainable standard of healthcare without discrimination on the basis of disability. This includes the duty under article 25(d) CRPD to require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent. This prompts the question as to when treatment without consent might be dealt with as a breach of articles 17 and 25 and when might it reach the level of severity to engage article 15.52 Article 15 is clearly a compromise. As Lord presciently remarked in 2010: As drafted, many core human rights issues with the potential to trigger Article 15 will require elaborate argumentation that draws on a holistic reading of the CRPD and engages provisions on non-discrimination and reasonable accommodation (articles 2, 3, and 5), legal capacity (article 12), Physical and mental integrity (article 17), informed consent (articles 1 and 25) and liberty of the person (article 14).53
Australia entered a ‘declaration of its understanding’ that ‘the Convention allows for compulsory assistance or treatment of persons, including measures taken for the treatment of mental disability, where such treatment is necessary, as a last resort and subject to safeguards’.54 Having resisted attempts to prohibit mental health detention and treatment without any consent as CIDT, Australia wanted to ensure that mental health laws authorizing these practices would be maintained.
3. Paragraph 1 3.1 ‘Free Consent’ and Personal Autonomy The characterization of the CRPD as representing a new paradigm in human rights for people with disabilities is a familiar one, particularly in relation to people with mental or psychosocial disabilities. It is important to sketch the key contours of what might be 50 Comments, Proposals, and Amendments Submitted Electronically, Seventh Session, Article 17 IDC Submission, available at: . 51 52 Degener and Begg (n 24) 33. This is discussed in Minkowitz (n 23). 53 Lord (n 12) 43. 54 Declaration entered on ratification by Australia, available at: . Notwithstanding the nomenclature used, such statements are of course reservations as defined by Art 2(1)(d) VCLT.
fennell
Article 15
437
described as the old and the new human rights paradigms. The key difference resides in their respective attitudes to what Robert Castel describes as relations de tutelle—tutelary relationships—relationships of tutelage or guardianship. In Castel’s words: The contractual basis of liberalism necessitates the comparison of the insane person with the child. This is the great pedagogical analogy of the medicine of mental health within whose framework its whole history develops. Either the family relationship or guardianship by official mandate: for medicine there is no other alternative.55
The old human rights paradigm acknowledges the legitimacy of tutelary relations, accepting the power of the state to detain and treat people with mental disabilities for paternalist reasons or for public protection, but insisting on restrictions on medical decision-making affecting the right to liberty, the right to be free from torture or inhuman or degrading treatment, and the right to physical and psychological integrity. The new paradigm seeks to universally prohibit these interventions as manifestations of disability discrimination and social exclusion. As the UN Special Rapporteur on the Right to the Highest Attainable Standard of Physical and Mental Health put it, the CRPD Committee ‘emphasizes full respect for legal capacity, the absolute prohibition of involuntary detention based on impairment and the elimination of forced treatment. That responds to the inadequacy of procedural safeguards alone, requiring sharpened attention to non-coercive alternatives and community inclusion to secure the rights of persons with disabilities.’56 The Special Rapporteur on Health remarked that within the ‘evolving framework’, not all human rights mechanisms have embraced the absolute ban on involuntary detention and treatment articulated by the Committee, and that, at present there is an impasse over how obligations in relation to non-consensual treatment are implemented in light of the provisions of the CRPD given the different interpretations by international human rights mechanisms.57 An example of adherence to the old paradigm is the Council of Europe anti-torture framework. The old paradigm is reflected in the case law of the European Court of Human Rights in respect of articles 3, 5, and 8 ECHR, the UN Mental Illness Principles adopted in 1991,58 the Council of Europe Principles concerning the Legal Protection of Incapable Adults issued in 1999,59 and the 2004 Council of Europe Recommendation of the Committee of Ministers concerning the protection of the human rights and dignity of persons with mental disorder.60 These documents all acknowledge the legitimacy of clinical power and tutelary authority, provided they are subject to substantive and procedural limitations.
55 Robert Castel, The Regulation of Madness: The Origins of Incarceration in France (trs W D Halls, University of California Press 1988) 38. 56 Report of the Special Rapporteur on the Right of Everyone to the Highest Attainable Standard of Physical and Mental Health UN Doc A/HRC/35/21 (28 March 2017) para 33. 57 ibid para 34. 58 UN Principles for the Protection of Persons with Mental Illness and for the Improvement of Mental Health Care UN Doc A/RES/46/119 (17 December 1991). 59 Council of Europe Committee of Ministers Recommendations on Principles concerning the Legal Protection of Incapable Adults (R(99)4), available at: . 60 Council of Europe Recommendation of the Committee of Ministers to Member States concerning the protection of the human rights and dignity of persons with mental disorder Rec (2004)10, available at: .
fennell
438
Protection against Torture and Cruel or Inhuman or Degrading Treatment
3.1.1 Detention on Grounds of Unsoundness of Mind A tutelary relationship may be initiated through a number of gateways. The first is detention under mental health legislation. Under article 5(1)(e) ECHR, detention on grounds of unsoundness of mind can be accepted as lawful, provided it is carried out in accordance with a procedure prescribed by law. This law must require objective medical evidence to be presented to a competent authority that the person suffers from a true mental disorder of a kind or degree warranting confinement and that deprivation of liberty is a proportionate response.61 The ECtHR has stressed that ‘involuntary hospitalisation may be used only as a last resort for want of a less invasive alternative, and only if it carries true health benefits without imposing a disproportionate burden on the person concerned’.62 In Mihailovs v Latvia63 the ECtHR held that detention must be in accordance with the substantive criteria for involuntary placement in article 17 of the 2004 Council of Europe Mental Disorder Recommendation,64 namely that the person has a mental disorder, that their condition presents a significant risk of serious harm to their health or to other persons, that the placement has a therapeutic purpose, that there is no less restrictive way of meeting the person’s needs, and that the person’s own opinion has been take into consideration. Once detained, the person must be notified of the fact that they are detained, as well as their rights to challenge, and must be able to apply for speedy review of the lawfulness of the detention to an independent court or tribunal with the power to order release if detention is not warranted.65 The review body must apply a procedure appropriate to determine the lawfulness of deprivation of liberty and the burden of proof is to be on the authority seeking to justify detention.66
3.1.2 Guardianship on Grounds of Mental Incapacity The second potential gateway to the imposition of a tutelary relationship on a person with disabilities is via a finding of incapacity and the subjection of the person to the guardianship of another who is given power to commit the person to an institution and to control their treatment. In Central and Eastern Europe there has been a widespread practice of using adult guardianship laws to deprive people of liberty, to make decisions about their treatment, and indeed to exercise all aspects of their rights as citizens.67 The person is formally deprived of legal capacity and a guardian is appointed with power to admit them to psychiatric hospital, to consent to treatment on their behalf, and to Winterwerp v Netherlands (1979) 2 EHRR 387. Pleso v Hungary [2012] ECHR 1767 para 66. 63 Mihailovs v Latvia [2013] ECHR 65 para 145. 64 Recommendation No Rec (2004) 10 of the Committee of Ministers of the Council of Europe concerning the protection of the human rights and dignity of persons with mental disorder (adopted on 22 September 2004). 65 Van der Leer v the Netherlands (1990) 12 EHRR 567; X v United Kingdom (1981) 4 EHRR 188. 66 Hutchison Reid v United Kingdom (2003) 37 EHRR 9. 67 eg in Shtukatorow v Russia (2008) ECHR 223 para 47, the applicant was declared fully incapacitated under Art 29 of the Civil Code of the Russian Federation of 1994 and placed in the care of a guardian with the effect that all legal transactions had to be carried out by the guardian. In Stanev v Bulgaria [2012] ECHR 46, the applicant was declared partly incapacitated under s 5 of the Persons and Family Act of 1949 which allows for a person who is unable to look after their own interests on account of mental illness or mental deficiency must be entirely deprived of legal capacity and placed under plenary guardianship and adults with milder forms of disability were ‘partially incapacitated’ and placed under partial guardianship. These and other cases are discussed further below. 61 62
fennell
Article 15
439
exercise any rights on their behalf to challenge detention. Such arrangements effectively deprive people of all their Convention rights to challenge detention or treatment without consent, since the guardian could consent to detention and treatment and in many cases only the guardian could challenge these interventions.68 In 2008, in Shtukaturov v Russia the ECtHR held that determinations of incapacity engaged the right to respect for private life under article 8 ECHR; that any interference with the right had to be proportionate and; that article 8 imposed a positive obligation to use a decision-making process which is fair and such as to ensure due respect of the interests safeguarded by article 8.69 Mr Shtukaturov had not been present at the hearing. The Court found a violation of the right to a fair trial under article 6 ECHR, noting that ‘the applicant played a double role in the proceedings: he was an interested party, and, at the same time, the main object of the court’s examination. His participation was therefore necessary not only to enable him to present his own case, but also to allow the judge to form his personal opinion about the applicant’s mental capacity’.70 The ECtHR also adapted the 30-year-old Winterwerp criteria for lawful psychiatric detention, to develop a similar ‘kind or degree’ requirement for capacity proceedings, holding that: The existence of a mental disorder, even a serious one, cannot be the sole reason to justify full incapacitation. By analogy with cases on deprivation of liberty, in order to justify full incapacitation the mental disorder must be ‘of a kind or degree’ warranting such a measure.71
Shtukaturov was decided two months before the CRPD came into force. In contrast to the new paradigm approach of article 12 CRPD, the European Court of Human Rights accepted the principle that the state had the power to deprive people of legal capacity based on mental disability. The Court sought to set substantive and procedural limits on the use of this power, based on the Council of Europe’s Incapacity Principles,72 to which it has had frequent resort in subsequent cases. By 2012 the ECtHR had developed a significant body of case law on incapacity, the right to a fair trial under article 6 ECHR and the right to respect for private life under article 8, whereby expert medical reports were required, which ‘address the degree of a person’s incapacity’.73 The ECtHR approach is to permit individuals to be deprived wholly or partially of legal capacity, provided that procedural safeguards and substantive requirements of proportionality are met, and that there is objective medical evidence of mental disorder of a kind or degree warranting deprivation of capacity. This runs counter to the CRPD Committee’s interpretation of article 12 in General Comment No 1 issued in 2014.74 There, the CRPD Committee noted the ‘general failure to understand that the human 68 See Matter v Slovakia (1999) ECHR 38; Shtukaturov v Russia [2008] ECHR 223; Stanev v Bulgaria [2012] ECHR 46; DDV Lithuania [2012] ECHR 254; Kędzior v Poland [2012] ECHR 1809; Mihailovs v Latvia [2013] ECHR 65 all provide examples of cases where such guardianship laws were at issue. See Lucy Series, Phil Fennell, and Julie Doughty, The Participation of P in Welfare Cases in the Court of Protection (2017) Section 2, available at: . 69 Shtukatorow v Russia (n 68) para 89. 70 71 ibid para 72; see also X and Y v Croatia [2011] ECHR 1835. ibid Shtukatorow para 94. 72 Recommendation No R (99) 4 of the Committee of Ministers of the Council of Europe on principles concerning the legal protection of incapable adults (the Council of Europe Incapacity Principles). 73 X and Y v Croatia (n 72); Stanev v Bulgaria (n 69); Kedzior v Poland (n 69); Sykora v Czech Republic [2012] ECHR 1960 paras 101 and 103; AN v Lithuania ECtHR judgment (31 August 2016) para 123. 74 CRPD Committee, ‘General Comment No 1 Equal Recognition before the Law Article 12’ UN CRPD/ C/GC1 (19 May 2014).
fennell
440
Protection against Torture and Cruel or Inhuman or Degrading Treatment
rights-based model of disability implies a shift from the substitute decision-making paradigm to one that is based on supported decision-making’.75 The General Comment goes on to reaffirm that ‘a person’s status as a person with a disability or the existence of an impairment (including a physical or sensory impairment) must never be grounds for denying legal capacity or any of the rights provided for in article 12. All practices that in purpose or effect violate article 12 must be abolished in order to ensure that full legal capacity is restored to persons with disabilities on an equal basis with others . . . Article 12 does not permit such discriminatory denial of legal capacity, but, rather, requires that support be provided in the exercise of legal capacity.’76 Although mental and physical integrity and non-consensual interventions aimed at correcting or alleviating a perceived disability were not accepted into the text of article 15, immediately after the CRPD was adopted, Manfred Nowak, the UN Special Rapporteur on Torture, offered significant support to the new paradigm in his Interim Report of July 2008. He stated that ‘medical treatments of an intrusive and irreversible nature, when they lack a therapeutic purpose, or aim at correcting or alleviating a disability, may constitute torture and ill-treatment if enforced or administered without the free and informed consent of the person concerned.’77 What made persons with disabilities particularly vulnerable to torture and CIDTP in Nowak’s view, was that they were more likely to be in a situation of powerlessness, subject to a tutelary relationship and in a situation of dependence where decision-making power is taken away from them by ‘discriminatory laws and practices’ and given to others, and hence they become ‘an easier target of abuse’.78 As to the circumstances in which unlawful detention might amount to cruel, inhuman or degrading treatment (CIDT), Special Rapporteur Nowak said this: In certain cases, arbitrary or unlawful deprivation of liberty based on the existence of a disability might also inflict severe pain or suffering on the individual, thus falling under the scope of the Convention against Torture. When assessing the pain inflicted by deprivation of liberty, the length of institutionalization, the conditions of detention and the treatment inflicted must be taken into account.79
This approach was later applied by the UN Committee on the Rights of Persons with Disabilities in dealing with the individual communication in Noble v Australia, where a detention in breach of article 14 ICCPR was held also to breach article 15 CRPD, discussed further below.80 In February 2013, the UN Special Rapporteur on Torture, Juan Mendez, issued a report focusing on ‘certain forms of abuses in health-care settings that may cross a threshold of mistreatment and which is tantamount to torture or cruel, inhuman or degrading treatment or punishment’. The report identified the policies that promote these practices and existing protection gaps,81 reinforcing the mandate’s adherence to the new paradigm. Special Rapporteur Mendez ‘embraced the ongoing paradigm shift, which increasingly encompasses various forms of abuse in healthcare settings within 76 ibid para 3. ibid paras 9 and 15. ‘Interim Report of the Special Rapporteur on Torture and other Cruel Inhuman or Degrading treatment or Punishment’ (Manfred Nowak) UN Doc A/63/175 (28 July 2008) para 47; on this see also Tina Minkowitz, ‘The United Nations Convention on the Rights of Persons with Disabilities and the Right to be Free from Non- Consensual Interventions’ (2004–2005) 34 Syracuse J Int’l L and Com 405. 78 79 Nowak Report (n 77) para 50. Nowak Report (n 77) para 65. 80 Noble v Australia, CRPD Committee Report UN Doc CRPD/C/16/2 Annex II (29 September 2016). 81 Juan E Mendez, ‘Report of the Special Rapporteur on Torture’ UN Doc A/HRC/22/53 (1 February 2013). 75 77
fennell
Article 15
441
the discourse on torture’.82 The ‘new normative paradigm’ under the CRPD in his view offered the most comprehensive set of standards on the rights of persons with disabilities, applicable most notably in relation to healthcare, where the choices of people with disabilities could be overridden in their ‘supposed best interests’.83 It was here that ‘serious violations and discrimination against persons with disabilities may be masked as ‘good intentions’ of health professionals. Special Rapporteur Mendez declared it ‘necessary to highlight additional measures needed to prevent torture and ill-treatment against people with disabilities, by synthesizing standards and coordinating actions in line with the CRPD’.84 Special Rapporteur Mendez rejected the validity of the medical necessity doctrine, considering that it ‘continues to be an obstacle to protection from arbitrary abuses in health-care settings’. In his view this made it all the more important to clarify that ‘treatment provided in violation of the terms of the CRPD—either through coercion or discrimination—cannot be legitimate or justified under the medical necessity doctrine’.85 Hence, the CRPD new paradigm does not accept these interventions under any circumstances, and rejects the doctrine of medical necessity as a potential legitimation of such practices. A detailed discussion of the Mendez Report was published by Washington College School of Law in 2014. This included a critical response in the form of a Joint Statement from the American Psychiatric Association and the World Psychiatric Association, arguing against the statements requiring abolition of provisions allowing confinement or compulsory treatment in mental health settings, an absolute ban on all forced and non- consensual medical interventions against persons with disabilities, on the grounds that ‘the hospitalization of persons with mental disorders can be life-saving, and result in restoring a person with the ability to direct his or her own life’.86 Similarly, the Psychiatric Bodies disagreed with the statement that ‘confinement and restraint on people with mental disabilities . . . constitute torture and ill-treatment’, on the grounds that for psychotic patients attempting to severely injure themselves or others, restraint may be the only way to prevent severe injury to the patient and essential to the protection of other patients and staff. ‘It should be noted that patients in restraint should be monitored carefully, and such restraints must only be used for the shortest time possible. Short term restraint, when applied humanely, can be life saving.’87 As for involuntary treatment, whilst the APA and the WPA agreed that when involuntary treatment is used to inflict severe pain and suffering, rather than for the patient’s benefit, it may constitute CIDT. However, they disagree with the statement that ‘involuntary treatment and other psychiatric interventions in health care facilities are forms of torture and ill-treatment. It should be recognized that involuntary treatment, when used appropriately, is not a form of torture or ill-treatment.’88 The views expressed by the APA and the WPA reflect more closely the Council of Europe approach to human rights. At the core of the new normative paradigm is the ideal of ‘guaranteeing informed consent’ as ‘a fundamental feature of respecting an individual’s autonomy, self- determination and human dignity in an appropriate continuum of 83 84 85 ibid para 15. ibid para 61. ibid para 62. ibid para 35. Torture in Healthcare Settings; Reflections on the Special Rapporteur on Torture’s 2013 Thematic Report’ (n 16) 144–45. 87 88 ibid 143. ibid. 82 86
fennell
442
Protection against Torture and Cruel or Inhuman or Degrading Treatment
voluntary health-care services’.89 The Council of Europe CPT Standards concur with the idea that ‘patients should, as a matter of principle, be placed in a position to give their free and informed consent to treatment’.90 They go on to say that the fact that a person has been admitted to a psychiatric hospital on an involuntary basis is not to be construed as authorizing treatment without his consent, and that every competent patient, whether through voluntary or involuntary means, should be given the opportunity to refuse treatment or any other medical intervention. However, the Standards also accept that this ‘fundamental principle’ can be derogated from, as long as the derogation is ‘based on law and only relates to clearly and strictly defined exceptional circumstances’.91 As will be discussed further below, the CPT Standards also accept that restraint may be used as a last resort in limited circumstances as long as it is necessary and proportionate to prevent harm to the person or to others. This is where new and old paradigm part company. The new paradigm does not accept derogations from the principle of informed consent, even if those are based on law and are strictly or narrowly defined. The new paradigm seeks to prohibit absolutely the imposition of tutelary relationships, regimes of substitute decision-making, and non-consensual treatment on people with disabilities. We have already characterized as ‘old paradigm’ the Council of Europe enforcement system under the ECHR. The CRPD and CAT regimes are charged with delivering the ‘new paradigm’ rights. Hence, Council of Europe member states and the EU, which are also signatories to the CRPD and its Optional Protocol, are subject to two parallel anti-torture jurisdictions, the UN general human rights enforcement apparatus on the one hand and the European Court and the Committee for the Prevention of Torture on the other. Having considered the background and context of article 15, we now turn to its interpretation and application.
3.2 Torture Torture and CIDTP have been defined over time through customary international law and entrenched in multilateral treaties. Such treaties deal either with the human rights dimension of this conduct (eg the ECHR and indeed the CRPD) or/and its criminal dimension, as is the case with the UN Convention against Torture (CAT). Article 15 CRPD relies on this extensive body of treaty and case law for its own definition of the conduct prohibited in paragraph 1.92 89 ‘Report of the Special Rapporteur (Anand Grover) on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, Informed Consent’ UN Doc A/64/272 (10 August 2009) paras 9 and 18. 90 CPT Standards Involuntary placement in psychiatric establishments (2017), available at: , para 41. 91 ibid. 92 Association for the Prevention of Torture, ‘Torture in International Law: A Guide to Jurisprudence’, available at: ; Steven Dewulf, The Signature of Evil: (Re)defining Torture in International Law (Intersentia 2011); Malcolm D Evans, ‘Getting to Grips with Torture’ (2002) 51 ICLQ 365. Juan E Mendez and Andrea Nicolessa, ‘Evolving Standards for Torture in International Law’ in Metin Başoğlu (ed), Torture and Its Definition in International law: An Interdisciplinary Approach (OUP 2017) 215–46; Nicholas Svenass, ‘The United Nations Convention against Torture and Other Cruel Inhuman or Degrading Treatment: The Absolute Prohibition and the Obligation to Prevent in Metin Başoğlu’, ibid 247–72; Yuval Ginbar ‘Making Human Rights Sense of the Torture Definition’, in Başoğlu, ibid 273–14; Lisa Davies ‘The Gendered Dimension of Torture, Rape, and other forms of Gender Based Violence under International Law’ in Başoğlu, ibid 315–71; Manfred Nowak and Elizabeth McArthur, The United Nations Convention Against Torture A Commentary: Oxford Commentaries on International Law (OUP 2008); David Luban, Torture, Power and Law (CUP 2014); OHCHR, Interpretation of Torture in the Light
fennell
Article 15
443
In Ireland v United Kingdom the ECtHR defined torture as ‘deliberate inhuman treatment causing very serious and cruel suffering’.93 Article 1 CAT offers a more elaborate definition: Any act by which severe pain or suffering, whether physical or mental, is intentionally inflicted on a person for such purposes as obtaining from him or a third person information or a confession, punishing him for an act he or a third person has committed or is suspected of having committed, or intimidating or coercing him or a third person, or for any reason based on discrimination of any kind, when such pain or suffering is inflicted by or at the instigation of or with the consent or acquiescence of a public official or other person acting in an official capacity. It does not include pain or suffering arising only from, inherent in or incidental to lawful sanctions.
In 2001 the UN Special Rapporteur for the Commission on Human Rights reminded governments that ‘the prohibition of torture relates not only to acts that cause physical pain but also to acts that cause mental suffering to the victim, such as intimidation and other forms of threats’. Moreover, ‘the fear of physical torture may itself constitute mental torture’.94 Acts falling short of the torture definition may constitute cruel, inhuman, or degrading treatment or punishment under article 16 CAT. As the ECtHR has repeatedly held, the purpose of the distinction between torture and inhuman or degrading treatment was ‘to attach a special stigma to deliberate inhuman treatment causing very serious and cruel suffering’.95 The ECtHR has also referred to the ‘purposive element (of ) torture, as recognized in CAT, which in article 1 defines torture in terms of the intentional infliction of severe pain or suffering with the aim of obtaining information, inflicting punishment or intimidating, or for any reason connected with discrimination’.96 In Cestaro v Italy the European Court of Human Rights considered its previous case law on torture and reiterated that the basis of the concept was deliberate inhuman treatment causing very serious and cruel suffering. Applying the principle from Selmouni v France,97 the Court held that ‘the severity of the suffering is, in the nature of things, relative; it depends on all the circumstances of the case, such as the duration of the treatment, its physical or mental effects and, in some cases, the sex, age, and state of health of the victim, etc’.98 The ECtHR went on to refer to the ‘purposive element’ in the definition of to torture In article 1 CAT ‘as the intentional infliction of severe pain with the aim of obtaining information, inflicting punishment, intimidating, or for any other discriminatory purpose’. Here severe violence was gratuitously inflicted by police on a person who had already surrendered to arrest and was seated with hands raised above his head, apparently as a reprisal. This was clearly torture.99
of the Practice and Jurisprudence of International Bodies, available at: . OHCHR, Istanbul Protocol Manual on the Effective Investigation and Documentation of Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, available at: . OHCHR, Preventing Torture: An Operational Guide for National Human Rights Institutions, available at: . [1978] 2 EHRR 25 para 167. UN Special Rapporteur for the Commission on Human Rights Report of 3 July 2001 to the General Assembly on the question of torture and other cruel, inhuman or degrading treatment or punishment UN Doc A/56/156 (3 July 2001) paras 3 and 7. 95 Ireland v United Kingdom, [1978] 2 EHRR 25 para 167; Selmouni v France [200] 29 EHRR 403 para 96. 96 Most recently in Olisov and Others v Russia, ECtHR Judgment (2 May 2017) para 86. 97 98 99 (2000) 29 EHRR 403 para 100. Cestaro v Italy (n 9) para 171. ibid para 173. 93 94
fennell
444
Protection against Torture and Cruel or Inhuman or Degrading Treatment
Although article 15 CRPD is modelled on article 7 ICCPR, there are strong links with the enforcement apparatus of CAT. In his report issued in July 2008, two months after the CRPD came into force, the UN Special Rapporteur on Torture, Manfred Nowak, welcomed the opportunity that the CRPD provided to review the anti-torture framework in relation to persons with disabilities.100 This report, together with the report of his successor, Juan Mendez, in 2013 set the tone for the implementation of article 15 CRPD, further developing and affirming the new paradigm. Nowak emphasized that the application of article 15 CRPD ‘can be informed by the definition of torture in article 1 CAT’.101 Four elements are required under CAT in order to substantiate the crime of torture, namely: severe pain or suffering, a specific (torture) intent, purpose, and state involvement. Two ECtHR cases involving force-feeding of prisoners illustrate the presence of all these factors. In each the state was found guilty of torture. In Nevmerzhitsky v Ukraine, the Court held that the manner in which the applicant had been forcibly fed with the use of handcuffs and a mouth widener could amount to torture within the meaning of article 3 ECHR if there was no medical necessity for the force-feeding.102 In the circumstances, the force-feeding was so severe and disproportionate to the circumstances of the victim that it warranted the characterization of torture. The Court inferred that the intention was to punish the prisoner under the pretext of a medical intervention.103 Four years later, in Ciorap v Moldova104 the Court again found a breach of article 3 ECHR, finding that repeated force-feeding, ‘not prompted by valid medical reasons’ but rather with the aim of ‘forcing the applicant to stop his protest, and performed in a manner which unnecessarily exposed him to great physical pain and humiliation, can only be considered as torture’.105 In both cases the interventions were intentional and the improper purpose was present, in that they were aimed at punishing the victims. Hence, the absence of a therapeutic purpose can ensure that a measure will be designated as torture. The absence of any proof that appropriate procedures had been authorized by a doctor led the Court to conclude that the interventions had no therapeutic purpose. This was a decisive factor. Whilst measures that constitute a medical necessity will not amount to torture or CIDT for the purposes of the ECHR, medical necessity does not provide a defence under the CRPD.106 Interestingly, the CRPD Committee tends to characterize ill-treatment as a breach of article 15 rather than making a distinction between torture and CIDTP. Indeed, in some cases where the sole purpose has been punishment or discipline rather than therapy, the CRPD Committee has characterized the treatment as CIDTP rather than torture. For example, in its concluding observations on Chile, the CRPD Committee expressed ‘deep concern that practices such as psychosurgery, electroconvulsive therapy, extended isolation in cells without heating or basic services, physical restraints and other types of treatment deemed to be cruel, inhuman or degrading are employed in the state party with the sole purpose of “disciplining” or “correcting deviant behaviour” in persons with psychosocial disabilities’.107 Treatment established as having such a sole purpose, would probably be characterized as torture under the ECtHR case 100 Interim Report of the UN Special Rapporteur on Torture Manfred Nowak UN Doc A/63/175 (28 July 2008) para 41. 101 102 ibid para 44. Nevermerzhitsky v Ukraine (2006) 43 EHRR 32, para 97. 103 104 105 ibid para 98. Ciorap v Moldova (2007) ECHR 502. ibid para 89. 106 Mendez Report (n 11) para 54. 107 CRPD Committee, ‘Concluding Observations on the initial Report of Chile’ UN Doc CRPD/C/CHL/ CO/1 (13 April 2016) para 33.
fennell
Article 15
445
law. Similarly in respect of Korea, the Committee described solitary confinement, constant beating, restraint, and excessive drug treatment as CIDT rather than torture.108 We now examine each of the four elements in the torture definition.
3.2.1 Severe Mental or Physical Pain and Suffering Torture requires the infliction of physical or mental pain and the victim’s suffering must be severe. The UN Human Rights Committee’s General Comment No 20 on article 7 ICCPR emphasizes that ‘the prohibition in article 7 relates not only to acts that cause physical pain but also to acts that cause mental suffering to the victim’.109 As the ECtHR has repeatedly emphasised, the severity of the suffering is ‘in the nature of things, relative; it depends on all the circumstances of the case, such as the duration of the treatment, its physical or mental effects and, in some cases, the sex, age and state of health of the victim’.110 In this respect some of the jurisprudence of the ECtHR is relevant. Until the 2001 ruling in Keenan v United Kingdom,111 the ECtHR had always maintained a strict requirement that ill-treatment must attain a minimum level of severity to engage article 3 ECHR. Although this minimum level of severity involved demonstrating physical injury or recognized psychological damage, in Keenan v United Kingdom the ECtHR adapted the test to enable closer scrutiny of the treatment afforded to mentally vulnerable detainees. If a person who is detained and suffering from a mental illness is subject to disproportionate force, ‘proof of the actual effect on the person may not be a major factor’, and this could amount to inhuman or degrading treatment.112 The Court found a breach of article 3 ECHR because of the disproportionate use of force in placing Mr Keenan in solitary confinement and a failure to provide adequate medical treatment.113 This is an important general point, which is of direct relevance to article 15 CRPD and its applicability. Such an adaptation of the minimum level of severity requirement is essential to enable human rights bodies to exercise the necessary ‘special vigilance’ to protect persons with intellectual or psychosocial disabilities. In his July 2008 Report, Nowak showed clear support for the new paradigm when he noted that ‘the acceptance of involuntary treatment and involuntary confinement runs counter to the provisions of the CRPD’ and: Medical treatments of an intrusive and irreversible nature, when they lack a therapeutic purpose, or aim at correcting or alleviating a disability, may constitute torture and ill treatment if administered without the free and informed consent of the person concerned.114
This rationale adopts the wording put forward by DRI and WNUSP before the Ad Hoc Committee and signifies that treatments addressing mental disorders, which are of an intrusive or irreversible nature and administered without consent, depending on the nature of the treatments, their purpose, and the circumstances in which they are administered,
108 CRPD Committee, ‘Concluding Observations on the initial Report of the Republic of Korea’ UN Doc CRPD/C/KOR/CO/1 (20 October 2014) para 20. 109 HRCtee, ‘CCPR General Comment No 20: Article 7 (Prohibition of Torture, or Other Cruel, Inhuman or Degrading Treatment or Punishment)’ (10 March 1992) para 5. 110 Selmouni v France (n 95) para 100; Bati and Others v Turkey [2008] ECHR 246 para 120; Cestaro v Italy (n 9) para 171. Nevmerzhitsky v Ukraine (2006) 43 EHRR 32 para 80. 111 112 113 Keenan v United Kingdom (2001) 33 EHRR 913. ibid para 113. ibid. 114 Nowak Report (n 11) para 47.
fennell
446
Protection against Torture and Cruel or Inhuman or Degrading Treatment
may amount to cruel, inhuman, or degrading treatment or punishment. This approach has been adopted by the CRPD Committee in several concluding observations.115
3.2.2 Intent: Torture and Cruel, Inhuman, or Degrading Treatment In order to amount to torture, the severe pain and suffering must be intentionally inflicted. In ICTY Prosecutor v Kunarac and Others, the defendants had raped their victims and argued that their intention was of a sexual nature. The Appeals Chamber of the ICTY distinguished between intention and motivation and held that the crucial question as far as intent was concerned was ‘whether the perpetrator intended to act in a way which, in the normal course of events, would cause severe pain or suffering, whether physical or mental, to his victims’.116 In his 2008 Report, Nowak stated that the requirement of intent ‘can be effectively implied where a person has been discriminated against on the basis of disability’. This was particularly relevant in the context of medical treatment of persons with disabilities, where serious violations and discrimination against persons with disabilities may be masked as ‘good intentions’ on the part of health professionals. Conduct which is negligent lacked the intent required to amount to torture under article 1, but it could in the Special Rapporteur’s opinion, constitute ill-treatment if it led to severe pain and suffering.117 Treatment falling short of the definition of torture may amount to inhuman or degrading treatment. In Stanev v Bulgaria the ECtHR held that ‘treatment has been held to be “inhuman” because, inter alia, it was premeditated, was applied for hours at a stretch and caused either actual bodily injury or intense physical or mental suffering’. It has been considered ‘degrading’ when the treatment is such as to ‘arouse in its victims feelings of fear, anguish and inferiority capable of humiliating and debasing them and possibly breaking their physical or moral resistance or driving them to act against their will or conscience.’118 The ECtHR will also consider whether, as far as the consequences are concerned, the ill-treatment adversely affected the person’s personality. Whether there was intention to debase or humiliate is a factor to be taken into account, but the absence of any such purpose or intent does not mean there has been no breach of article 3.119 Hence, there is a clear shift from the ‘specific intent’ of CAT in the jurisprudence of the ECtHR and other non-criminal law-based courts and tribunals.
115 eg CRPD Committee, ‘Concluding Observations on Chile’ UN Doc CRPD/C/CHL/CO/1(13 April 2016) para 33; Serbia, UN Doc CRPD/C/SRB/CO/(23 May 2016) para 37; Slovakia UN Doc CRPD/C/ SVK/CO/1 (17 May 2016) paras 45–46; Uganda, UN Doc CRPD/C/UGA/CO/1 (12 May 2016) paras 28–29, see also MDAC, ‘Psychiatric Hospitals in Uganda: A Human Rights investigation (2014), available at: ; Kenya UN Doc CRPD/C/KEN/CO/1 (30 September 2015) paras 29–30; Brazil UN Doc CRPD/C/ BRA/CO/1 (29 September 2015) para 29; Republic of Korea UN Doc CRPD/C/KOR/CO/1 (20 October 2014) para 29; Concluding observations on the initial report of Croatia UN Doc CRPD/C/HRV/CO/1 (15 May 2015) para 23 ‘frequent use of involuntary treatment and restraint measures’ amounting to degrading treatment’. 116 ICTY Prosecutor v Kunarac, Appeals Chamber judgment (12 June 2002) para 153. 117 Interim Report of the UN Special Rapporteur on Torture Manfred Nowak UN Doc A/63/175 (28 July 2008) para 49. 118 Stanev v Bulgaria para 203; see also Keenan v United Kingdom (n 113) para 110 and Jalloh v Germany (2007) 44 EHRR 32 para 68; Price v United Kingdom [2001] ECHR 453, para 30. 119 Price v United Kingdom (n 118) para 30.
fennell
Article 15
447
3.2.3 State Involvement As noted above, a key reason why the formulation of article 15(1) CRPD follows that of article 7 ICCPR rather than article 1 CAT, is because the former is clearly applicable to acts committed by private parties, whereas the latter was drafted with a view to encompassing torture inflicted by state officials.120 In 1982, General Comment No 7 on article 7 ICCPR states that it is ‘the duty of public authorities to ensure protection by the law against such treatment even when committed by persons acting outside or without any official authority’.121 International humanitarian law extends to impose liability for acts of torture committed by non-state actors. In ICTY Prosecutor v Kunarac the Appeals Chamber concluded that the public official requirement was not a requirement under customary international law in relation to the criminal responsibility of an individual for torture outside of the framework of the CAT.122 This was reaffirmed in 2005 in ICTY Prosecutor v Kvocka and Others.123 By the time the CRPD entered into force, the CAT was being interpreted as being applicable to conduct attributed also to private parties.124 The ECtHR has also repeatedly held that the obligation under article 1 ECHR to secure to everyone within their jurisdiction the rights and freedoms defined in the Convention, taken in conjunction with article 3, places states under a positive obligation ‘to take measures designed to ensure that individuals within their jurisdiction are not subjected to torture or inhuman or degrading treatment, including such ill-treatment administered by private individuals.’125 In 2008 Nowak said this in his annual report: The language used in Article 1 of the CAT concerning consent and acquiescence by a public official clearly extends state obligations into the private sphere and should be interpreted to include state failure to protect persons within its jurisdiction from torture and ill-treatment committed by private individuals.126
In 2013, his successor expressed the view in his report that the ‘state’s duties to prevent torture apply not only to public officials . . . but also to doctors, healthcare professionals and social workers, including those working in private hospitals’.127 In da Silva Pimentel v Brazil, the CEDAW Committee observed that: ‘the state is directly responsible for the action of private institutions when it outsources its medical services’ and ‘always maintains the duty to regulate and monitor private health-care institutions’.128
120 Janet E Lord, ‘Shared Understanding or Consensus Masked Disagreement? The Anti-Torture Framework in the Convention on the Rights of Persons with Disabilities’ 33 Loy L A Int’l & Comp Law Rev 27–81 2010–2011 54. 121 HRCtee, ‘CCPR General Comment No 7’ para 2. 122 ICTY Prosecutor v Kunarac (n 118) para 148. 123 ICTY Prosecutor v Kvocka Appeals Chamber judgment (28 February 2005) para 284. 124 In Hajrizi and Others v Serbia and Montenegro Com No 161/2000 CAT Doc CAT/C/29/D/161/2000 (21 November 2002) a civilian pogrom against Roma people in Yugoslavia that was tolerated by the police was held to constitute CIDTP. 125 HLR v France (1997) 26 EHRR 29 para 40; Costello Roberts v United Kingdom (1993) 19 EHRR 112 paras 27–28; A v United Kingdom (1998) 27 EHRR 611 para 22; Z v United Kingdom (2001) 34 EHRR 97 para 73. 126 Report of the Special Rapporteur on Torture Manfred Nowak Human Rights Council, UN Doc A/ HRC/7/3 (15 January 2008) para 31. 127 Mendez Report (n 11) para 24. 128 ibid para 25; CEDAW Committee, Communication No 17/2008 para 7.5.
fennell
448
Protection against Torture and Cruel or Inhuman or Degrading Treatment
3.2.4 Prohibited Purpose As far as prohibited purpose is concerned, the list in article 1 CAT includes ‘such purposes as obtaining from him or a third person information or a confession, punishing him for an act he or a third person has committed or is suspected of having committed, or intimidating or coercing him or a third person, or for any reason based on discrimination of any kind’. In ICTY Prosecutor v Kunarac and Others the ICTY held that ‘If one prohibited purpose is fulfilled by the conduct, the fact that such conduct was also intended to achieve a non-listed purpose, even one of a sexual nature, is immaterial.’ In Kunarac the victims had been raped because they were Muslims, and so the prohibited purpose of discrimination had been met. The purposes listed in article 1 CAT are illustrative and not exhaustive. The purposes of intimidation, punishment or for any reason based on discrimination of any kind, are the most apt to cover cases involving persons with disabilities. As Special Rapporteur Mendez noted in 2013: Although it may be challenging to satisfy the required purpose of discrimination in some cases, as most likely it will be claimed that the treatment is intended to benefit the ‘patient’, this may be met in a number of ways. Specifically, the description of abuses outlined below demonstrates that the explicit or implicit aim of inflicting punishment, or the objective of intimidation, often exist alongside ostensibly therapeutic aims.129
In his July 2008 report Nowak made particular reference to the situation of people with intellectual or psychosocial disabilities who may be deprived of their liberty for long and potentially indefinite periods in situations where they ‘are frequently subjected to unspeakable indignities, neglect, severe forms of restraint and seclusion as well as physical, mental and sexual violence’. They may be ‘exposed to medical experimentation and intrusive and irreversible medical treatments without their consent (eg sterilisation, abortion, and interventions aiming to correct or alleviate a disability, such as electroshock treatment and mind altering drugs including neuroleptics)’. The Special Rapporteur expressed concern that ‘in many cases such practices, when perpetrated against persons with disabilities, remain invisible or are being justified, and are not recognized as torture or other cruel, inhuman or degrading treatment or punishment’.130 The CAT definition of torture expressly proscribes acts inflicting physical and mental suffering committed against persons for reasons of discrimination of any kind. Nowak noted that this could include treatments administered without consent. Medical treatments of an intrusive and irreversible nature, when they lack a therapeutic purpose, or aim at correcting or alleviating a disability, may constitute torture and ill treatment if administered without the free and informed consent of the person concerned.131 Hence non-consensual interventions that are intended to correct or alleviate a disability could amount to torture or CIDT. This could cover a wide range of interventions. Special Rapporteur Nowak used lobotomy and psychosurgery as examples to illustrate the principle that the more intrusive and irreversible the treatment, the greater was the obligation on states to ensure that health professionals provide care to persons with disabilities only on the basis of their free and informed consent.132 129 131
fennell
Mendez Report (n 11) para 22. 132 ibid para 47. ibid para 59.
130
Nowak report 2008 (n 11) paras 38–41.
Article 15
449
The 1991 UN Mental Illness Principles already provided that psychosurgery and other intrusive and irreversible treatments for mental disorder ‘shall never be carried out on a patient who is an involuntary patient in a mental health facility and, to the extent that domestic law permits them to be carried out, they may be carried out on any other patient only where the patient has given informed consent and an independent external body has satisfied itself that there is genuine informed consent and that the treatment best serves the health needs of the patient’.133 This principle could extend to other interventions, such as psychotropic medication administered without consent, sterilisation, abortion, surgical castration as a treatment for sex offenders subject to ‘protective measures’, electro convulsive therapy (ECT), restraint, physical and chemical, and seclusion or solitary confinement.
3.3 ‘Medical or Scientific Experimentation without his or her free consent’ In addition to torture and CIDTP, article 15(1) prohibits medical or scientific experimentation without the person’s free consent. We have already seen how the IDC and the WNUSP tried to extend this prohibition to all non-consensual medical interventions, and to detention of persons with disabilities. Article 15(1) prohibits medical and scientific experimentation without free consent, but this prohibition does not extend to non- consensual medical treatment. It should be noted that the CRPD Committee does not confine itself to commenting on research, but also deals with non-consensual psychiatric treatment under the heading of article 15 and calls upon states to introduce concrete measures to protect persons with disabilities by prohibiting and preventing medical procedures and experimentation without their free and informed consent.134 Where states have laws authorizing guardians to give proxy consent to research or experimentation, the Committee has called for their repeal.135 In the case of the EU, the Committee expressed concern that research funded by the European Union is not accompanied by ethics guidelines to ensure that all persons with disabilities involved in such research are enabled to give their informed consent, and recommended that the EU review its ethics guidelines in this regard, provide easy to read consent forms, and prevent substituted decision-making in this area.136
UNGA Res 46/119 (17 December 1991) Annex UN Mental Illness Principles 1991 principle 14. CRPD Committee, ‘Concluding Observations on the Initial Report of Morocco’ UN Doc CRPD/ C/ MAR/ CO/ 1 (25 September 2015) paras 32– 33; Uganda UN Doc CRPD/ C/ UGA/ CO/ 1 (12 May 2016) para 28; Kenya UN Doc CRPD/C/KEN/CO/1 (30 September 2015) paras 29–30; El Salvador UN Doc CRPD/C/SLV/CO/1 (8 October 2014) para 34; Turkmenistan UN Doc CRPD/C/TKM/CO/1 (13 May 2015) paras 27–28. 135 CRPD Committee, ‘Concluding Observations on the Initial Report of the United Arab Emirates’ UN Doc CRPD/C/ARE/CO/1 (2 October 2016) para 30; Italy UN Doc CRPD/C/ITA/CO/1(6 October 2016) para 40; Costa Rica UN Doc CRPD/C/CRI/CO/1 (12 May 2014) para 31 (in this case the Committee regretted the progress made towards the passage of legislation to authorize research carried out with the consent of guardians). 136 CRPD Committee, ‘Concluding Observations on the Initial Report of the European Union’ UN Doc CRPD/C/EU/CO/1 (2 October 2015) paras 42–43. 133 134
fennell
450
Protection against Torture and Cruel or Inhuman or Degrading Treatment
4. Paragraph 2 4.1 Effective Preventive Measures Article 15(2) requires states parties to take all effective legislative, administrative, judicial, or other measures to prevent persons with disabilities, on an equal basis with others, from being subjected to torture or cruel, inhuman, or degrading treatment or punishment. As has been noted above, this provision mirrors article 2 CAT.137 This is reiterated in the Human Rights Committee’s General Comment on article 7 ICCPR, whether ‘inflicted by persons acting in their official capacity or in a private capacity’.138 The ruling in ICTY Prosecutor v Furundžija makes it clear as a matter of International criminal law that states have a positive duty to put in place all those measures that may pre-empt the perpetration of torture.139 Whether torture or CIDTP is inflicted by a state official or a private party, the state has a positive duty to take effective measures to protect the rights of people with disabilities, to prevent torture or CIDTP, and to carry out an official investigation which is capable of identifying those responsible, and leading to their punishment.140 In Furundžija the ICTY held that this positive duty is breached in case of: (i) failure to adopt appropriate measures necessary for implementing the prohibition and (ii) the maintenance in force or passage of laws which are contrary to the prohibition.141 Moreover states are under a positive duty to introduce specific criminal offences of torture and CIDTP, and efficient criminal law provisions enabling these to be enforced.142 The ECtHR has developed a significant body of case law on the prohibition of torture and inhuman and degrading treatment in article 3 ECHR as it applies to health and social care provision. As with the CRPD, the ICCPR and the CAT, there is a positive obligation on states under article 3 to take measures to provide protection against abuse by private parties, and ‘these measures should provide effective protection, in particular, of children and other vulnerable persons and include reasonable steps to prevent ill- treatment of which the authorities had or ought to have had knowledge’.143
137 CAT Ctee, ‘General Comment No 2 Implementation of Article 2 by States Parties’ UN Doc CAT/C/ GC/2 (24 January 2008) para 2. 138 HRCtee, ‘General comment No 20: Article 7 (Prohibition of Torture, or other Cruel, Inhuman or Degrading Treatment or Punishment)’ UN Doc HRI/GEN/1/Rev 9 (1994) vol I para 2. 139 Furundžija (n 4), para 148. 140 Soering v United Kingdom (1989) 11 EHRR 439. In Assenov v Bulgaria (1999) 28 EHRR 652 para 102, the Strasbourg Court held that ‘where an individual raises an arguable claim that he has been seriously ill-treated by the police or other such agents of the State unlawfully and in breach of Article 3, that provision, read in conjunction with the state’s general duty under Art 1 of the Convention to “secure to everyone within their jurisdiction the rights and freedoms defined in . . . [the] Convention”, requires by implication that there should be an effective official investigation. This investigation, as with that under Article 2, should be capable of leading to the identification and punishment of those responsible.’ In Z v United Kingdom (n 27) para 73, the Court held that Art 3 ECHR, requires states to take measures designed to ensure that individuals within their jurisdiction are not subjected to torture or inhuman or degrading treatment, including such ill-treatment administered by private individuals. These measures should provide effective protection, in particular, of children and other vulnerable persons and include reasonable steps to prevent ill-treatment of which the authorities had or ought to have had knowledge. 141 Furundžija (n 4). 142 Art 4 CAT requires states to take effective measures to prevent torture and other cruel, inhuman or degrading treatment or punishment from being practised within their jurisdiction. See also in the disability context the decision of the ECtHR in Bures v Czech Republic [2012] ECHR 1819 para 81, and in the policing context Cestaro v Italy (n 9) paras 231 and 243–46. 143 Z v United Kingdom (2002) 34 EHRR 3 para 73.
fennell
Article 15
451
In Bures v Czech Republic the ECtHR emphasized that wilful ill-treatment (in this case restraint) of persons who are within the control of the state cannot be remedied exclusively by the award of compensation to the victim. There had to be a criminal sanction against such conduct.144 In Cestaro v Italy the ECtHR reiterated its insistence that article 3 of ECHR and article 4 CAT imposed a positive obligation on states to introduce efficient criminal law provisions criminalizing torture, and capable of imposing appropriate penalties on those responsible for acts of torture.145
4.1.1 Psychiatric Drugs Given without Consent In certain circumstances psychiatric medication administered to persons with mental disabilities without their free and informed consent or against their will, under coercion, or as a form of punishment may amount to torture or CIDT. Antipsychotic drugs, often referred to as neuroleptics, have traditionally been administered as emergency sedation or rapid tranquilization without consent in psychiatric hospitals as an alternative to other tranquilizers such as Lorazepam. Anti-psychotics or neuroleptics are often referred to also as major tranquilizers, because of their highly sedating effect. The so-called old-style anti- psychotics have a side effect profile that includes Parkinsonian symptoms and in some cases an illness called tardive dyskinesia, which can be fatal. In many countries, old style anti-psychotics have been replaced by a second generation of neuroleptic drugs which are thought not to have the same adverse effects, but which are associated with other side effects, such as extreme weight gain and type two diabetes. All of these drugs have strong sedative properties. Special Rapporteur Nowak referred to the side effects of neuroleptics, including ‘trembling, shivering and contractions’ and noted that these drugs ‘make the subject apathetic and dull his or her intelligence’.146 In Viana Acosta v Uruguay, the Human Rights Committee had concluded that the treatment of the complainant, which included psychiatric experiments and forced injection of tranquillizers against his will, constituted inhuman treatment.147 Nowak noted that forced and non-consensual administration of psychiatric drugs, and in particular of neuroleptics, for the treatment of a mental condition needs to be closely scrutinized and ‘may constitute a form of torture or ill treatment. Such an outcome will depend on the circumstances of the case and the suffering inflicted.’148What psychiatry refers to as ‘rapid tranquilization’ or ‘emergency sedation’ is consistently referred to in CRPD Committee reports as ‘chemical restraint’, condemned as inhuman or degrading treatment and states parties are recommended to discontinue the practices and reform those laws which allow them to take place.149 Other concluding observations refer to forced medical treatment, forced psychiatric treatment, or excessive drug treatment and call upon states to ban these.150 In the case of Peru, the 145 Bures v Czech Republic (n 144) para 81. Cestaro v Italy, paras 209, 231, 243–46. Nowak Report July 2008 (n 11) para 63. 147 HRCtee, ‘Views on Communication No 110/1981, Viana Acosta v Uruguay UN Doc CCPR/C/21/D/ 110/1981 (1981) paras 2.7, 14, and 15. 148 ibid. 149 CRPD Committee, ‘Concluding Observations on Serbia’ UN Doc CRPD/C/SRB/CO/1 (23 May 2016) paras 27–28; CRPD Committee, ‘Concluding Observations on the Initial Report by Slovakia’ UN Doc CRPD/C/SVK/CO/1 (17 May 2016) paras 45–46; CRPD Committee, ‘Concluding Observations on the Initial Report by Uganda’ paras 28–29; CRPD Committee, ‘Concluding Observations on the Initial Report by Kenya’ UN Doc CRPD/C/KEN/CO/1 (30 September 2015) paras 29–30. 150 CRPD Committee, ‘Concluding observations on Initial Report of Brazil’ UN Doc CRPD/C/BRA/CO/ 1 (29 September 2015) para 29. CRPD Committee, ‘Concluding Observations on the Initial Report by Korea’ (n 196) para 29; CRPD Committee, ‘Concluding Observations on the Initial Report of Croatia’ UN Doc 144 146
fennell
452
Protection against Torture and Cruel or Inhuman or Degrading Treatment
Committee expressed concern at ‘consistent reports of the use of continuous forcible medication, including neuroleptics’.151 As noted above, in the case of Germany these practices were seen as torture, rather than CIDTP.152 The Council of Europe CPT standards do not rule out psychiatric medication without consent. The issue is generally dealt with by the ECtHR under article 8 ECHR as an infringement of physical or psychological integrity. Article 8 will allow medication without consent as long as it is authorized by law, necessary (ie a proportionate response) to prevent the person harming themselves or others, and open to independent supervision and review by a court.153 Nevertheless, it appears from recent pronouncements of the CPT that the manner of administration of forced medication may take it across the threshold of CIDTP. The CPT Report on the United Kingdom expressed ‘some reservations’ at the forcible administration of the anti-psychotic drug Clozapine through the naso-gastric tube to patients in high secure special hospitals. Clozapine is an anti-psychotic drug for ‘treatment of resistant schizophrenia’. It is not available in injectable form, so it is usually only given with consent. The drug carries a risk that patients will develop neutropenia, a potentially fatal side effect, and so patients must be subject to a blood-monitoring regime, administered by the manufacturer. Although expressing reservations, the CPT did not go so far as to say this was inhuman or degrading treatment. The delegation noted that they ‘had an opportunity to speak with the consultant psychiatrists who initiated the procedure, read about the team’s approach and findings and met with patients who had undergone the NGT procedure while being restrained manually by a number of nurses’.154 Before drawing any firmer conclusions the CPT wished to examine carefully the individual patient documentation provided by the hospital and indicated that it would return to the issue in a separate communication to the UK authorities. 155
4.1.2 Sterilization and Other Reproductive Rights Violations Sterilization of women and men with learning disabilities or psychosocial disabilities has long been a human rights issue, dating back at least to the first compulsory sterilization legislation in the USA, passed by Indiana in 1907, followed by Washington and California in 1909.156 Indeed, the US sterilization statutes were used as the model for the 1933 Nazi Law to prevent Hereditarily Diseased Offspring, which came into force in 1934 and under which an estimated 400,000 people were sterilized.157 The International anti-torture provisions developed in the 1940s and 1950s had their origins in the medical experiments carried out on persons detained in concentration camps in Nazi Germany,
CRPD/C/HRV/CO/1 (15 May 2015) para 23 ‘frequent use of involuntary treatment and restraint measures’ amounting to degrading treatment. 151 CRPD Committee, ‘Concluding Observations on the Initial Report by Peru’ UN Doc CRPD/C/PER/ CO/1 (16 May 2012) para 30. 152 CRPD Committee, ‘Concluding Observations on the Initial Report by Germany’ para 33. 153 See X v Finland (2012) ECHR 1371. 154 CAT Ctee, ‘Report to the United Kingdom Government of the visit to the United Kingdom by the Committee for the Prevention of Torture’ (19 April 2017) para 108. 155 ibid. 156 Alexandra Minna Stern ‘Sterilized in the Name of Public Health Race, Immigration, and Reproductive Control in Modern California’ (2005) 95 American Journal of Public Health 1128–38, 1129. 157 Paul Weindling, Health, Race and German Politics between National Unification and Nazism, 1870–1945 (CUP 1989).
fennell
Article 15
453
which included the development of programmes of mass sterilization by X Ray.158 A proposal was made by the British delegation during the travaux préparatoires of the ECHR to extend the scope of the prohibition of torture and inhuman or degrading treatment in article 3 by adding the following words: In particular, no person shall be subjected to any form of mutilation or sterilisation, or to any form of torture or beating. Nor shall he be forced to take drugs, nor shall they be administered to him without his knowledge or consent. Nor shall he be subjected to imprisonment with an excess of light, darkness or silence as to cause mental suffering.159
The proposal was dropped following resistance from the Swedish, Danish, and Norwegian, all of which had legislation permitting sterilization of people with learning disabilities and ‘sexual criminals’.160 A key question is whether forced or involuntary sterilization engages article 15, or instead articles 17, 23, and 25 CRPD. Articles 17 and 25 have already been discussed above. Article 23 requires states to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood, and relationships, on an equal basis with others, so as to ensure inter alia that ‘persons with disabilities, including children, retain their fertility on an equal basis with others’. There are strong indications that the anti-torture framework is engaged. In his January 2008 report Nowak noted that the UN Human Rights Committee had found the sterilization of women without their consent to be in breach of article 7 ICCPR. He stressed that ‘forced abortions or sterilizations carried out by state officials in accordance with coercive family planning laws or policies may amount to torture’.161 Given the particular vulnerability of women with disabilities, ‘forced abortions and sterilizations of these women, if they are the result of a lawful process by which decisions are made by their “legal guardians” against their may constitute torture or ill-treatment’.162 In 2009 the UN CAT Committee expressed deep concern about allegations of continued involuntary sterilization of Roma women and recommended that Slovakia should take urgent measures to investigate promptly, impartially, thoroughly, and effectively all allegations of involuntary sterilization of Roma women, prosecute, and punish the perpetrators and provide the victims with fair and adequate compensation.163 Three cases ensued against Slovakia in the ECtHR, all involving Roma women sterilized without their informed consent, who as a result had suffered stigma and ostracism in their community. In VC v Slovakia,164 the applicant was sterilized without her informed consent, immediately after she had delivered a child via Caesarean section, on the basis of consent given while she was in full labour. The ECtHR held that sterilization as such was not, in accordance with generally recognized standards, a life-saving medical intervention. 158 United States v Karl Brandt and others, published in Trials of War Criminals before the Nuremberg Military Tribunals under Control Council Law No 10 (1950). 159 Council of Europe Assembly Doc 1949, 90 at 235, European Commission on Human Rights preparatory Work on Article 3 of the European Convention on Human Rights DH(56)5 22 May 1956, available at: . 160 Paul Weindling, ‘International Eugenics: Swedish Sterilization in Context’ (1999) 24 Scandinavian Journal of History 179–97. 161 Mendez Report (n 11) para 69. 162 Report of the Special Rapporteur on Torture UN Doc A/HRC/7/3 (15 January 2008) para 38. 163 CAT Ctee, ‘Report on the 43rd and 44th session’ UN Doc A/65/44 49–50, referred to in I G v Slovakia App No 15966/04, judgment (12 June 2012) para 88. 164 App No 18968/07, ECtHR judgment (8 November 2011).
fennell
454
Protection against Torture and Cruel or Inhuman or Degrading Treatment
Where sterilization was carried out without the informed consent of a mentally competent adult, it was incompatible with the requirement of respect for human freedom and dignity.165 Although there had been no intention to ill-treat, the medical staff had acted with gross disregard ‘for her right to autonomy and choice as a patient’.166 This constituted degrading treatment in breach of article 3 ECHR. In each of the other cases the ECtHR also held that regardless of intention, the staff had acted with gross disregard for the person’s autonomy and that this, coupled with the adverse consequences which had ensued for the women, was enough to meet the threshold requirement for degrading treatment.167 In one of these, IG v Slovakia,168 IG had been sterilized at the age of sixteen, following the delivery of her baby without her knowledge and without her informed consent or that of her guardian. Moreover, she did not find out about it until three years later. The implication of these cases is that if a person has a guardian, the consent of the guardian would legitimize the treatment as being in the person’s best interests. Proxy consent to sterilization may be acceptable to the ECtHR, but it is not acceptable to the CRPD Committee, which has tended to deal with non-consensual sterilization by proxy consent under article 17 rather than article 15 CRPD as shown below. In his 2013 Report Special Rapporteur Mendez identified a number of practices that contravened articles 1 or 16 CAT and article 15 CRPD, with a lengthy section on ‘reproductive rights violations’, including abusive treatment in treatment settings, involuntary sterilization, and forced sterilization.169 Mendez declared forced sterilization ‘an act of violence, a form of social control and a violation of the right to be free from torture and other inhuman or degrading treatment’.170 He called upon states to outlaw forced or coerced sterilization in all circumstances and reaffirmed the 2011 statement of the international Federation of Gynaecology and Obstetrics that: ‘sterilization for prevention of future pregnancy cannot be ethically justified on grounds of medical emergency. Even if a future pregnancy may endanger a woman’s life or health, she . . . must be given the time and support she needs to consider her choice. Her informed decision must be respected, even if it is considered liable to be harmful to her health.’171 As Powell and Stein note, ‘common justifications for sterilizing persons with disabilities fall into three broad categories: eugenic ideologies; the espoused best interest of the individual and/or others; and the perceived unfitness of the individual to parent’.172 All three may be seen in the anti-torture case law. Underlying eugenic ideologies may be seen in the sterilization of Mexican women in California,173 of Roma women in central Europe,174 and forced sterilization of indigenous women in the most vulnerable social sectors of Peru.175 Research carried out in El Salvador, Honduras, Mexico, and Nicaragua, ibid paras 106–20. ibid para 119; see also . 167 NB v Slovakia (2012) ECHR 991 para 78; IG v Slovakia (n 165) para 123. 168 169 IG v Slovakia (n 163). Mendez Report 2013 (n 11) paras 45–50. 170 171 ibid para 48. ibid paras 33, 48, and 88. 172 Robyn M Powell and Michael Ashley Stein, ‘Persons with Disabilities and their Sexual, Reproductive, and Parenting Rights’ (2016) 11 Frontiers of Law in China 53, 58. 173 Stern (n 158) 1128, 1129–30. 174 See eg IG v Slovakia (n 163) and other cases discussed in further detail below. 175 HRCtee, ‘Concluding Observations on Peru’ UN Doc CCPR CCO/70/PER (15 November 2000) para 76. 165 166
fennell
Article 15
455
concluded that women living with HIV, where health providers knew about their condition when they became pregnant, were six times more likely to undergo forced or coerced sterilization in these countries. Many women reported that health-care providers told them that their HIV status meant they had forfeited the right to choose the number and spacing of their children, or to use a contraceptive method of their choice. Health- care workers also provided incorrect information about the consequences for their health and that of their children and denied them access to treatments to minimize mother-to- child HIV transmission to coerce them into becoming sterilized.176 Perceived unfitness to parent was an issue in relation to sterilization of minors in Colombia, discussed further below.177 Forced abortion or sterilization in accordance with coercive family planning laws may amount to torture but certainly fall under cruel, inhuman or degrading treatment. The FIGO Ethical Guidance also states that: ‘Only women themselves can give ethically valid consent to their own sterilization. Family members—including husbands, parents, legal guardians, medical practitioners and, for instance, government or other public officers— cannot consent on any woman’s or girl’s behalf.’178 Sterilizations by ‘lawful guardians’, which can include court-authorized sterilizations, may amount to inhuman or degrading treatment, but, as noted above, these are more likely to be considered under articles 17, 23, and 25 CRPD. The CRPD Committee’s very first concluding observations on Tunisia in May 2011 contain no reference to article 15, but under article 17 is a veiled reference to sterilization, where the Committee urged the legal ‘abolition of surgery and treatment without the full and informed consent of the patient, and ensure that national law especially respects women’s rights under article 23 and 25 of the Convention’.179 The concluding observations on Spain in October of the same year use the same formulation, but refer specifically to sterilization.180 In 2012, in its concluding observations on Argentina, the Committee referred again to sterilization, expressing concern that where women were under guardianship, their guardians could give consent to their sterilization. The Committee recommended amendment of the law to remove this possibility and requested the state to ‘take steps to provide the necessary support to women under guardianship or trusteeship to ensure that the women themselves are the ones who give their informed consent for a legal abortion or for sterilization’.181 In 2013 the Committee criticized an Australian Senate Committee, which had recently recommended that involuntary sterilization of persons with disabilities should be permitted to continue. The Committee urged Australia to adopt uniform national
176 Tamil Kendall and Claire Albert, ‘Experiences of Coercion to Sterilize and Forced Sterilization Among Women Living with HIV in Latin America’ 2015 18 Journal of the International AIDS Society 194. 177 Available at: . 178 FIGO Committee for the Study of Ethical Aspects of Human Reproduction and Women’s Health, ‘Ethical Issues in Obstetrics and Gynaecology’ at 123, available at: . 179 CRPD Committee, ‘Concluding Observations on Tunisia’ UN Doc CRPD/C/TUN/CO/1 (13 May 2011) para 29. 180 CRPD Committee, ‘Concluding Observations on the Initial Report of Spain’ UN Doc CRPD/C/ESP/ CO/1 (19 October 2011) paras 37–38. 181 CRPD Committee, ‘Concluding Observations on the Initial Report of Argentina’ UN Doc CRPD/C/ ARG/CO/1 (8 October 2012) paras 31–32.
fennell
456
Protection against Torture and Cruel or Inhuman or Degrading Treatment
legislation prohibiting the sterilization of boys and girls with disabilities, and adults with disabilities, in the absence of their prior, fully informed, and free consent.182 In 2014, the Committee’s concluding observations on Costa Rica expressed deep concern at the practice of forcing women and girls with disabilities to undergo sterilizations and urged the government to take steps to ‘eradicate forced sterilization, to raise awareness of the rights of women and girls with disabilities within their families and among managers of the institutions in which they are interned, and to guarantee full respect for their personal, physical and mental integrity by ensuring that mechanisms providing protection against forced sterilization are effective and accessible’.183 Similar recommendations were made the same year in relation to Korea184 and Mexico185 under article 17. In 2015 sterilization featured in the concluding observations of many CRPD Committee country reports under article 17. The Committee has consistently defined situations where guardians of persons with disabilities were authorized to consent to sterilization of the person concerned as ‘forced sterilization without free and informed consent and regularly called for repeal of the relevant law, often referring also to abortions carried out on the basis of proxy consent as ‘coerced abortion’.186 States would also be called upon to review cases by an independent authority to conduct investigations, punish perpetrators, adopt measure for compensation and reparation of victims and provide mechanisms of supported decision-making.187 Brazil, for example, was called on to provide support for persons with disabilities in order to make informed choices and to educate families, guardians, medical professionals and managers of institutions of the rights of persons with disabilities, particularly women and girls with disabilities, under article 17.188 In its observation on the EU, the Committee expressed concern that persons with disabilities are exposed to involuntary treatment, including forced sterilization and abortion and called upon the EU to take all possible measures to ensure that the individual’s right to free, prior and informed consent to treatment is upheld and that supporting decision-making mechanisms are provided in member states.189 In 2014, the Constitutional Court of Colombia delivered a decision authorizing sterilization without the consent of minors with intellectual and psychosocial disabilities,
CRPD Committee, ‘Concluding Observations on the Initial Report of Australia’ paras 39 and 40. CRPD Committee, ‘Concluding Observations on the Initial Report of Costa Rica’ UN Doc CRPD/C/ CRI/CO/1 (12 May 2014) paras 37–38. 184 CRPD Committee, ‘Concluding Observations on the Initial Report of Korea’ paras 33–34, where Korea was urged to carry out investigations into recent and current cases. 185 CRPD Committee, ‘Concluding Observations on the Initial Report of Mexico’ UN Doc CRPD/C/ MEX/CO/1 (27 October 2014) paras 37–38. 186 CRPD Committee, ‘Concluding Observations on the Initial Report of the Czech Republic’ UN Doc CRPD/C/CZE/CO/1 (15 May 2015) paras 36 and 37; CRPD Committee, ‘Concluding Observations on the Initial Report of Germany’ paras 37 and 38; CRPD Committee, ‘Concluding Observations on the Initial Report of Croatia’ paras 27–28; CRPD Committee, ‘Concluding Observations on the Initial Report of Mongolia’ UN Doc CRPD/C/MNG/CO/1 (13 May 2015) paras 28–29; Turkmenistan paras 31–32; CRPD Committee, ‘Concluding Observations on the Initial Report of Mauritius’ UN Doc CRPD/C/MUS/CO/1 (30 September 2015) paras 29–30; CRPD Committee, ‘Concluding Observations on the Initial Report of Ukraine’ UN Doc CRPD/C/UKR/CO/1 (2 October 2015) paras 34–35. 187 CRPD Committee, ‘Concluding Observations on the Initial Report of the Dominican Republic’ UN Doc CRPD/C/DOM/CO/1/ (8 May 2015) paras 34–35. 188 CRPD Committee, ‘Concluding Observations on the Initial Report of Brazil’ paras 34–35. 189 CRPD Committee, ‘Concluding Observations on the Initial Report of the EU’ UN Doc CRPD/C/EU/ CO/1 (2 October 2015) paras 46–47. 182 183
fennell
Article 15
457
based on their best interests and their perceived unfitness to parent.190 The case was a constitutional challenge to article 7 of Law 1412 of 2010, which prohibited the practice of surgical sterilization for contraceptive purposes on minors in all cases. The Constitutional Court declared article 7 constitutional, but went on to state that: When it comes to minors with disabilities for whom there is a proven impossibility to give consent in the future to undergo sterilization procedures, the parents, or in any case, the legal guardian, must request judicial authorization to allow surgical sterilization. In that sense, previous case law has considered that a person that does not have the capacity to understand what sterilization is or its consequences, as it is the case of mental disabilities, she or he will hardly be in a place to understand the responsibility attached to the exercise of maternity or paternity and therefore, the implications of being able to or not to procreate.191
The Court took the view that sterilization would ensure ‘more dignified living conditions for those who cannot make decisions related to the exercise of their reproductive freedom and that they may be exposed to forced pregnancies in detriment of their dignity and personal integrity’.192 The notion that sterilization can protect against sexual abuse is seriously misplaced in that it is more likely to mask the consequences of sexual abuse and may well make women more vulnerable. Subsequently, this decision was confirmed by two further decisions of the Constitutional Court in 2016.193 In 2016 the CRPD Committee in its concluding observations referred to the issue under article 17 and expressed concern that ‘sterilization of persons with disabilities without their consent, and with the authorization of a judge, is a legal practice’.194 The Committee urged the Colombian government to ‘take the necessary steps to abolish the sterilization of persons with disabilities without their free and informed consent and recommended immediate review of the Constitutional Court decisions ‘with a view to maintaining the prohibition, without exception, of sterilization of persons with disabilities, particularly children, without their free and informed consent’.195 It also recommended the training of judges and prosecutors, ‘with the involvement of organizations of persons with disabilities, on the rights of persons with disabilities and the international obligations of the state party, mainly those relating to non-discrimination on grounds of disability and the personal integrity of children with disabilities’.196 In May 2017 the CRPD Committee’s concluding observations on Canada possibly signalled the reason why this issue is dealt with under article 17. The Committee noted with concern that although forced or compulsory sterilization is illegal in Canada, ‘people with disabilities, particularly people with intellectual and/or psychosocial disabilities, still experience involuntary sterilization through the manipulation of their consent’.197 The Committee recommended that Canada work with the provinces to ensure that health- care and substitute decision-making practices prevent involuntary sterilization, including
190 Decision of the Constitutional Court of Colombia Case C-133/14 (11 March 2014). See Centre for Reproductive Rights, Press Release No 08 (18 March 2014). 191 Available at: . 192 193 ibid. Cases C-182 (13 April 2016) and T-303 (15 June 2016). 194 CRPD Committee, ‘Concluding Observations on Initial Report of Colombia’ UN Doc CRPD/C/ COL/CO/1 (30 September 2016) para 46. 195 196 ibid para 47. ibid. 197 CRPD Committee, ‘Concluding Observations on Initial Report of Canada’ UN Doc CRPD/C/CAN/ CO/1 (8 May 2017) para 35.
fennell
458
Protection against Torture and Cruel or Inhuman or Degrading Treatment
in situations where persons with disabilities are deemed to lack legal capacity to consent. This notion of ‘involuntary sterilization through manipulated consent’ includes proxy consent measures, which, as we have seen under previous concluding observations would have been deemed forced sterilization.
4.1.3 Female Genital Mutilation Female genital mutilation has featured in four country reports, all of which have dealt with the issue under article 17 CRPD. In relation to Ethiopia the Committee expressed concern at the existence of ‘harmful practices, such as female genital mutilation, which include women and girls with disabilities’ and recommended that the government ‘effectively address female genital mutilation both in law and in practice, including women and girls with disabilities’.198 Gabon too was called upon to ‘adopt all appropriate legal and administrative measures to eradicate female genital mutilation for all women and girls, including women and girls with disabilities, no matter what their country of origin.199 Uganda was called upon to criminalize female genital mutilation.200 Although female circumcision is prohibited by law in Kenya, the Committee was concerned that the practice affects women and girls with disabilities and called upon the government to implement the 2011 recommendations of the CEDAW Committee report on female genital mutilation201 and ensure that the action plan of the Anti-FGM Board includes a compilation of information on the women and girls subjected to such a practice and mechanisms for their reparation and redress.202
4.1.4 Surgical Castration There are historical accounts of surgical castration being practised on patients with learning disabilities and psychosocial disabilities. The UK authorities were alerted in 1923 to a patient who had been deported from Hamilton in Canada in 1923 and it was discovered he had been castrated. The Superintendent of the hospital in Canada said that he had sterilized a number of patients in this way, but ‘could not say’ under what legal authority.203 The State of Alberta passed a five-section Sexual Sterilization Act in 1928 that applied when ‘it was proposed to discharge any inmate from a mental hospital’.204 ‘Patients’ had to be examined by a Board that decided whether to recommend sterilization. If the Board decided that the patient might safely be discharged if the danger of procreation with its attendant risk of multiplication of the evil be transmission of the disease by progeny were eliminated, the board could authorize such operation for sexual sterilization as may be specified and appoint a competent surgeon to carry it out.205 The
198 CRPD Committee, ‘Concluding Observations on Initial Report of Ethiopia’ UN Doc CRPD/C/ETH/ CO/1 (4 November 2016) paras 38–39. 199 CRPD Committee, ‘Concluding Observations on Initial Report of Gabon’ UN Doc CRPD/C/GAB/ CO/1 (2 October 2015) paras 40–41. 200 CRPD Committee, ‘Concluding Observations on Initial Report of Uganda’ paras 34–35. 201 CEDAW Ctee, ‘Concluding Observations on Kenya’ UN Doc CEDAW/C/KEN/CO/7 (5 April 2011). 202 CRPD Committee, ‘Concluding Observations on Initial Report of Kenya’ paras 33–34. 203 Phil Fennell, Treatment without Consent: Law Psychiatry and the Treatment of Mentally Disordered People Since 1845 (Routledge 1994) 81. The State of Alberta passed a five section Sexual Sterilization Act in 1928. 204 The Alberta Law Collection, available at: s 4. 205 ibid s 5. Section 7 provided that the surgeon carrying out the operation could not be held criminally or civilly liable.
fennell
Article 15
459
Act was repealed in 1972, with 2,800 people including both men and women, having been sterilized under its authority.206 In 2012 the CAT Committee reported its concern at the continued use of surgical castration in the Czech Republic for sex offenders, as a measure of protective treatment and that the detention of sex offenders could be of an infinite duration.207 The CAT Committee had also heard that offenders were being told that they faced lifetime detention if they did not accept surgical castration. The Committee recommended that the Czech Republic desist from the practice and amend its legislation in order to bring it in line with international norms. Legislation regarding sex offenders should include procedural safeguards and precise regulations and professional instructions on their treatment and detention, including its duration.208 Of note here is the CAT Committee’s recognition of indefinite detention as a form of cruel, inhuman, or degrading treatment or punishment. Although surgical castration is usually carried out as a form of protective measure, when the CRPD Committee reported on the Czech Republic in 2015, it noted the continued practice of surgical castration with great concern, viewing it as a breach of article 15 CRPD, and as ‘a form of punishment’. The Committee urged the Czech Republic to put an end to surgical castration and any other kind of forced treatment as a form of punishment against persons with disabilities who are deprived of their liberty.209
4.1.5 Electro Convulsive Therapy (ECT), Unmodified ECT, and Use of ECT on Children The Council of Europe’s CPT Standards make it clear that the administration of ECT in its unmodified form (ie without anaesthetic and muscle relaxants) ‘can no longer be considered as acceptable in modern psychiatric practice’, and constitutes degrading treatment. Apart from the risk of fractures and other untoward medical consequences, the process as such is degrading for both the patients and the staff concerned. Consequently, ECT should always be administered in a modified form.210 The World Health Organization has called for a ban on unmodified ECT and has emphasized that ‘there are no indications for the use of ECT on minors, and hence this should be prohibited through legislation’.211 Special Rapporteur Nowak stated that ECT in its unmodified form ‘cannot be considered as an acceptable medical practice and may constitute torture or ill-treatment’. In its modified form, ECT was only acceptable with the free and informed consent of the person concerned, including on the basis of information on the secondary effects 206 Available at: . See Also Timothy J Christian and Burke M Barker, The Mentally Ill and Human Rights in Alberta: A Study of the Alberta Sexual Sterilization Act (University of Alberta Faculty of Law 1973). 207 CAT Ctee, ‘Concluding Observations on Czech Republic’ UN Doc CAT/C/CZE/CO/4-5 (13 July 2012) para 20. 208 ibid. 209 CRPD Committee, Concluding Observations on Initial Report of the Czech Republic’ UN Doc CRPD/ C/CZE/CO/1 (15 May 2015) paras 29–30. 210 CPT Standards ‘Involuntary Placement in Psychiatric Establishments’, available at: CPT/Inf(98) para 39. 211 See also World Health Organization Resource Book on Mental Health Human Rights and Legislation (WHO Geneva 2005, now withdrawn) at 64 stating that: ‘ECT has been and continues to be used in many countries for certain mental disorders. If ECT is used, it should only be administered after obtaining informed consent, and it should only be administered in modified form, ie with the use of anaesthesia and muscle relaxants. The practice of using unmodified ECT should be stopped.’
fennell
460
Protection against Torture and Cruel or Inhuman or Degrading Treatment
and related risks such as heart complications, confusion, loss of memory, and even death.212 In 2014 the CRPD Committee expressed concern about the reported number of cases of electro-convulsive therapy (ECT) in Sweden, at its possible use as a compulsory treatment and at reports that ECT is performed more often on women. The Committee recommended abolishing such non-consensual practices with regard to persons with disabilities in medical institutions.213 This indicates that ECT treatment without consent, even in a modified form, with muscle relaxant and anaesthetic, is viewed by the Committee as inhuman or degrading treatment. This view was confirmed by the Committee’s concluding observations on the United Kingdom in 2017, expressing concern at the permissible use of electro-convulsive therapy across the devolved governments and calling on the UK government to ‘prohibit and withdraw practices of non-consensual electro-convulsive therapy on the basis of any form of impairment, in all regions’.214
4.1.6 Seclusion, Caged Beds, and Other Restraints In 2013 Special Rapporteur Mendez repeated the statement of his predecessor, Manfred Nowak, that there can be ‘no therapeutic justification for the use of solitary confinement and prolonged restraint of persons with disabilities in psychiatric institutions’.215 Mendez had already issued a report on solitary confinement in 2011, stating that its imposition, of any duration, on persons with mental disabilities constitutes cruel, inhuman, or degrading treatment.216 In his 2013 report he stated that ‘any restraint on people with mental disabilities for even a short time may constitute torture and ill- treatment’. He was emphatic that an absolute ban should apply in all places of deprivation of liberty, including psychiatric hospitals and social care institutions on all coercive and non-consensual measures, including restraint and solitary confinement of people with psychological or intellectual disabilities. ‘The environment of patient powerlessness and abusive treatment of persons with disabilities in which restraint and seclusion is used can lead to other non-consensual treatment, such as forced medication and electroshock procedures.’217 In its 2015 concluding observations on Germany the CRPD Committee expressed deep concern that Germany did not ‘recognize the use of physical and chemical restraints, solitary confinement and other harmful practices as acts of torture, or also the use of physical and chemical restraints, in particular for persons with psychosocial disabilities in institutions and older persons in residential care’.218 Physical, mechanical, and chemical restraint and seclusion feature as breaches of article 15 CRPD in many of the concluding observations of the Committee, together with recommendations to discontinue the
Nowak Report (n 11) para 61. CRPD Committee, ‘Concluding Observations on the Initial Report of Sweden’ paras 37–39. 214 CRPD Committee, ‘Concluding Observations on the Initial Report of the United Kingdom’ UN Doc CRPD/C/GBR/CO/1 (29 August 2017) paras 36–37. 215 Report of the Special Rapporteur on Torture and other Cruel, Inhuman or Degrading Treatment or Punishment, Juan E Mendez, to the Human Rights Council UN Doc A/HRC/22/53 (1 February 2013) para 63; Nowak Report (n 11) paras 55–56. 216 Report of Special Rapporteur Torture Juan Mendez on Solitary Confinement UN Doc A/66/268 (5 August 2011) paras 67–68, 78. 217 ibid para 63. 218 CRPD Committee, ‘Concluding observations on the Initial Report of Germany’ paras 33 and 34. 212 213
fennell
Article 15
461
practices, to reform laws and policies which allow them to take place, and to strengthen monitoring and inspection of facilities where they may take place.219 In 2014 the Mental Disability Advocacy Centre (MDAC) reported on the use of caged beds in the Czech Republic, following up on their previous report carried out in 2003,220 as a result of which metal caged beds were banned, but netted cage beds were still permitted in psychiatric hospitals.221 As the report noted, the European Committee for the Prevention of Torture, the UN Committee against Torture, and the UN Human Rights Committee have all found that caged beds constitute ill-treatment and have called for them to be banned.222 The CAT Committee expressed concern in 2012 at the continued use of cage-beds, despite their prohibition in law, net-beds as well as the use of other restraint measures such as bed strapping, manacle and solitary confinement, often in unhygienic conditions and with physical neglect.223 The Committee was also concerned about the absence of investigations into the ill-treatment and deaths of institutionalized persons confined to cage and net-beds, including suicides and recommended that the state in question take measures to ensure the practical application of the prohibition on caged beds, as well as the extension of the prohibition to net beds, whose effects it found to be similar to those of cage-beds.224 The MDAC study noted that other restraints were also in wide use in Czech hospitals and ‘in some institutions the removal of caged beds has led to increased use of other degrading ‘alternatives’ such as seclusion, chemical restraint, and/or immobilization with belt straps.225 In 2015 the CRPD Committee expressed deep concern that ‘mechanical and chemical restraints, which may amount to torture or cruel, inhuman or degrading treatment, are commonly used in psychiatric institutions’ and urged the Czech government to immediately prohibit the use of mechanical and chemical restraints in psychiatric institutions on persons with psychosocial disabilities.226 In its annual report in 2015 the CRPD Committee expressed concern about the use of physical, mechanical, and chemical restraints and seclusion against persons with disabilities, particularly against persons with psychosocial disabilities institutionalized in psychiatric hospitals, mental health facilities, and prisons.227 The Committee referred to a number of non-consensual practices in psychiatric hospitals as amounting to torture or to inhuman or degrading treatment, expressing concern about: the use of net beds in Austria;228 ECT, restraint, and seclusion of boys and girls in mental health care in Sweden;229 coercive treatment in Denmark, including frequent involuntary application of ECT, the use of straps or belts for more than forty-eight hours, chemical restraints, or the reportedly frequent application of involuntary electro-convulsive therapy;230 and
219 CRPD Committee, Concluding Observations on the Initial report of Slovakia’ paras 43–44; CRPD Committee, ‘Concluding Observations on the initial Report of the Czech Republic’ paras 31–33; CRPD Committee, ‘Concluding Observations on the Initial Report of Australia’ paras 33 and 34. 220 Mental Disability Advocacy Centre, Caged Beds: Inhuman or Degrading Treatment or Punishment in Four EU Accession States, available at: . 221 Mental Disability Advocacy Centre Report on the Use of Caged Beds in the Czech Republic (2014), available at: . 222 223 224 ibid 12. Concluding Observations on Czech Republic para 21. ibid. 225 Mental Disability Advocacy Centre Report (n 223) 5. 226 Concluding observations on Czech Republic paras 31–33. 227 Report of CRPD Committee on its ninth-twelfth sessions UN Doc A/70/55 (2015) para 40. 228 Concluding Observations on Australia para 32. 229 Concluding Observations on Sweden paras 37–39. 230 Concluding Observations on Denmark paras 36–38.
fennell
462
Protection against Torture and Cruel or Inhuman or Degrading Treatment
the subjection of persons with psychosocial disabilities in Korean psychiatric hospitals to acts considered torture or cruel inhuman and degrading treatment, including solitary confinement, constant beating, restraint, and excessive drug treatment. The Committee urged Korea to abolish forced treatment that subjects persons with disabilities to cruel, inhuman, and degrading treatment and punishment.231
4.1.7 Oppressive and Coercive Treatment Regimes As in the case of Korea, various oppressive and coercive types of therapy have been found to constitute inhuman or degrading treatment. In the case of Iran, the Committee was concerned to find physical mutilation as a penal sanction being applied to persons with disabilities and called on Iran to cease physical chastisement of children with disabilities.232 In its May 2016 report on Serbia the CRPD Committee criticized the use of seclusion and chemical and physical restraint on children and persons with psychosocial disabilities.233 In 2013 Special Rapporteur Mendez referred to the use of military style drills or forced labour as a form of treatment in drug addiction treatment centres as inhuman or degrading treatment.234 The CRPD Committee’s report on China in 2012 expressed concern that the ‘correctional therapy’ offered at psychiatric institutions represented inhuman and degrading treatment. Further, the Committee expressed concern that not all medical experimentation without free and informed consent was prohibited by Chinese law.235 The CAT Committee’s report on China in 2015 reported that private and publicly-run clinics in China offer the so-called ‘gay conversion therapy’ to change the sexual orientation of lesbian and gay persons, and that such practices include the administration of electro-shocks and sometimes involuntary confinement in psychiatric and other facilities, which could result in physical and psychological harm.236 The CAT Committee underlined that China should take the necessary legislative, administrative and other measures to guarantee respect for the autonomy and physical and personal integrity of lesbian, gay, bisexual, transgender, and intersex persons and prohibit the practice of so-called ‘conversion therapy’, and other forced, involuntary or otherwise coercive or abusive treatments against them. It also recommended that China undertake investigations of instances of forced, involuntary, or otherwise coercive or abusive treatments of lesbian, gay, bisexual, transgender, and intersex persons and ensure adequate redress and compensation in such cases.237 China decriminalized homosexuality in 1997 and in 2002 the Chinese Society of Psychiatry declared that homosexuality was not a mental disease or disorder. In July 2017 a Chinese provincial court in Henan province ordered a psychiatric hospital to publish an apology in newspapers and pay compensation of around $400 to a thirty-eight-year-old man who had been forcibly admitted to the institution in 2015 by his wife and relatives, diagnosed with ‘sexual preference disorder’. The case was won on the narrow ground that he had been admitted in contravention of China’s 2013 Mental Health Law, which prohibits admission 232 Concluding Observations on Korea para 30. Concluding Observations on Iran. 234 Concluding Observations on Serbia para 37. Mendez Report (n 11) paras 40–2. 235 CRPD Committee, ‘Concluding Observations on the Initial Report of China’ UN Doc CRPD/C/ CHN/CO/1 (5 October 2012) paras 27 and 28. 236 CAT Ctee, ‘Concluding Observations on China’ UN Doc CAT/C/CHN/CO/5 (3 February 2016) para 54. 237 ibid para 55. 231 233
fennell
Article 15
463
unless the patient has a mental disorder and poses a danger to themselves or to others. He was forced to take medicine and receive injections during his nineteen-day detention.238
4.1.8 Failure to Give Adequate Medical Treatment or Pain Relief In McGlinchey v United Kingdom239 and Keenan v United Kingdom240 the ECtHR found a breach of article 3 ECHR because of a failure to provide adequate medical treatment to detained persons who subsequently died. Ms McGlinchey had not been provided with adequate treatment in relation to her heroin addiction, while Mark Keenan killed himself in solitary confinement. The Court found a lack of effective monitoring of his condition and a lack of ‘informed psychiatric input’ was unacceptable in relation to a person known to be a suicide risk, amounting to inhuman and degrading treatment.241 In Nevmerzhitsky v Ukraine the ECtHR reaffirmed that article 3 ECHR imposes a positive obligation to secure the health and well-being of detainees.242 Article 15 may also be breached by the failure to provide treatment to people who are not detained but are in the community. A person in severe pain who has no access to appropriate pain relief may be able to claim CIDT in relation to an omission to provide pain relief ‘when the suffering is severe and meets the minimum threshold under the prohibition against torture and ill-treatment; when the state is, or should be, aware of the suffering, including when no appropriate treatment was offered; and when the government failed to take all reasonable steps to protect individuals’ physical and mental integrity.243 In his report of 2013, Special Rapporteur Mendez included in his list of reproductive rights violations denial of legally available health services such as abortion and post- abortion care.244 In 2016 he reported that in failing to amend its abortion legislation the Northern Ireland government had violated the right of women to be free from torture or CIDT under the CAT. Abortion is only permitted in Northern Ireland if a woman’s life is at risk or if there is a risk of permanent and serious damage to her physical or mental health.245 These cases show the possibilities for the use of article 15 CRPD in denial of treatment cases, in conjunction with the right to the highest attainable standard of mental and physical health care under article 25, not just in cases where people are deprived of their liberty, but also in relation to people living in the community.
4.1.9 Conditions of Detention The prohibition of torture and CIDT in article 7 ICCPR is complemented by the positive requirements of article 10(1) ICCPR, which imposes an obligation on states to ensure that ‘all persons deprived of their liberty shall be treated with humanity and with respect for the inherent dignity of the human person’. The Human Rights Committee issued a General Comment on article 10 emphasizing that: The application of this rule, as a minimum, cannot be dependent on the material resources available in the State party. This rule must be applied without distinction of any kind, such as race, 238 ‘Chinese Man Forced to Undergo Gay Conversion Therapy in Mental Hospital Wins Lawsuit’ The Independent (4 July 2004); see also Human Rights Watch, available at: . 239 McGlinchey v United Kingdom (2003) 37 EHRR 41 para 53. 240 241 Keenan v United Kingdom (n 113). ibid paras 115–116. 242 243 Nevmerzhitsky v Ukraine (n 112) para 80. Mendez Report (n 11) para 54. 244 ibid paras 45–50. 245 Report of the Special Rapporteur on Torture and CIDT UN Doc A/HRC/31/57/Add 1 (24 February 2016) para 615.
fennell
464
Protection against Torture and Cruel or Inhuman or Degrading Treatment
colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status.246
The ECtHR has affirmed in a number of cases that the conditions under which a person was detained amounted to degrading treatment.247 In Price v United Kingdom, the Court held that ‘to detain a severely disabled person in conditions where she is dangerously cold, risks developing sores because her bed is too hard or unreachable, and is unable to go to the toilet or keep clean without the greatest of difficulty, constitutes degrading treatment contrary to article 3 [ECHR]’.248 Two individual communications have thus far involved the circumstances and conditions under which a person is detained and the applicability of article 15. X v Argentina involved a prisoner with disabilities and limited mobility and the failure of the prison authorities to make reasonable adjustments. The Committee found that Argentina had not ‘irrefutably demonstrated’ that the accommodations made in the prison were sufficient to ensure the author’s independent access to the bathroom and shower, recreation yard, and nursing service. The Committee judged that, in the absence of sufficient explanations, the state had failed to fulfil its obligations under article 9(1) CRPD to take measures to ensure accessibility to buildings and services. It had also failed under article 14(2) CRPD to ensure human rights guarantees for persons with disabilities deprived of their liberty, and provision of reasonable accommodation. In consequence of these breaches, the Committee found that Mr X had been placed in substandard conditions of detention that were incompatible with the right to physical and mental integrity required under article 17 CRPD. However, they were not enough to amount to a breach of article 15. The Committee ‘recalled’ that failure to adopt relevant measures and to provide sufficient reasonable accommodation required by persons with disabilities deprived of their liberty could constitute a breach of article 15(2)’, but on that occasion it considered there was not enough evidence to demonstrate a breach.249 This leaves open the possibility that in future cases failure to make accommodations might reach the level of severity to breach article 15 CRPD. In Noble v Australia250 the Committee did find a breach of article 15(2) CRPD in relation not to the conditions under which Mr Noble was detained but the psychological consequences of indeterminate and potentially infinite detention. At age nineteen Mr Noble had been arrested and charged with sexual offences, including penetration of a child under thirteen. He was declared unfit to stand trial because of his mental and intellectual disability and was subjected to a custody order. He had no opportunity to plead not guilty and the court made no finding of guilt. He remained in detention for nine years.251 The Committee concluded that articles 12 and 13 CRPD had been breached as he had been denied the right to legal capacity and had not been provided with adequate support or accommodation to ensure effective access to justice and a fair trial.252 The fact that he had not been tried and convicted, but detained on the basis of the state
HRCttee, General Comment 21 on Article 10 ICCPR (10 April 1992) para 4. 248 Nevmerzhitsky v Ukraine (n 112) para 80. Price v United Kingdom (n 120) para 30. 249 Communication No 8/2012, X v Argentina Report of the CRPD Committee UN Doc CRPD/C/11/10/ 8/2012 (18 June 2014) paras 8.5–8.7. 250 Noble v Australia (n 82). 251 ibid para 1. 252 ibid para 3. 246 247
fennell
Article 15
465
authorities’ assessment of the potential consequences of his intellectual disability, converted his disability into the core cause of his detention. This meant there was also a breach of the requirement in article 14(1)(b) that ‘the existence of a disability shall in no case justify a deprivation of liberty’. The Committee noted that Mr Noble had been detained for more than thirteen years in total without any indication of the duration of his detention and took into account the irreparable psychological damage that indefinite detention may have on a detained person. It concluded that the indefinite detention to which the author of the complaint was subjected amounted to inhuman and degrading treatment in violation of the Convention. In this case the Committee linked infringements of articles 12, 13, and 14 to a breach of article 15. Indefinite detention in breach of articles 12, 13, and 14 may produce sufficiently serious effects to amount to inhuman and degrading treatment.
fennell
Article 16 Freedom from Exploitation, Violence, and Abuse . States Parties shall take all appropriate le1 gislative, administrative, social, educational and other measures to protect persons with disabilities, both within and outside the home, from all forms of exploitation, violence and abuse, including their gender-based aspects. . States Parties shall also take all appropriate 2 measures to prevent all forms of exploitation, violence and abuse by ensuring, inter alia, appropriate forms of gender-and age- sensitive assistance and support for persons with disabilities and their families and caregivers, including through the provision of information and education on how to avoid, recognize and report instances of exploitation, violence and abuse. States Parties shall ensure that protection services are age-, gender-and disability-sensitive. . In order to prevent the occurrence of all 3 forms of exploitation, violence and abuse, States Parties shall ensure that all facilities and programmes designed to serve persons
with disabilities are effectively monitored by independent authorities. . States Parties shall take all appropriate 4 measures to promote the physical, cognitive and psychological recovery, rehabilitation and social reintegration of persons with disabilities who become victims of any form of exploitation, violence or abuse, including through the provision of protection services. Such recovery and reintegration shall take place in an environment that fosters the health, welfare, self-respect, dignity and autonomy of the person and takes into account gender-and age-specific needs. . States Parties shall put in place effective 5 legislation and policies, including women- and child-focused legislation and policies, to ensure that instances of exploitation, violence and abuse against persons with disabilities are identified, investigated and, where appropriate, prosecuted.
1. Introduction 2. Background and Travaux Préparatoires 2.1 Scope: Types of Harm Included in ‘exploitation, violence and abuse’ 2.2 Torture, Involuntary Treatment, and Informed Consent 2.3 Vulnerability of Disabled People and Prevention of Harm 3. Paragraph 1 3.1 ‘All appropriate legislative, administrative, social, education and other measures to protect’ 3.2 ‘Within and outside the home’ 3.3 ‘All forms of exploitation, violence and abuse, including their gender-based aspects’ 4. Paragraph 2 4.1 Preventative Measures, Ensuring ‘appropriate gender-and age-sensitive assistance and support’ 4.2 ‘Including through the provision of information and education on how to avoid, recognize and report instances’ 4.3 Ensure that Protection Services Are Age-, Gender-, and Disability-Sensitive 5. Paragraph 3 5.1 ‘All facilities and programmes’
keeling
467 468 468 470 475 479 479 481 482 484 484 485 486 487 487
Article 16 5.2 ‘Effectively monitored by independent authorities’ 6. Paragraph 4 6.1 Measures to Promote the Physical, Cognitive, and Psychological Recovery, Rehabilitation, and Social Integration 7. Paragraph 5 7.1 Effective Legislation and Policies . . . to Ensure Instances are Identified, Investigated and, where Appropriate, Prosecuted 7.2 Including Women-and Children-Focused Legislation and Policies
467 490 490 490 492 492 493
1. Introduction That disabled people experience higher rates of exploitation, violence, and abuse is not a contested fact.1 Indeed, it is a significant problem globally which requires immediate redress and, on this basis, the framing of the issue as a specific human right with detailed attendant obligations is important. Frequently, such harm is not dealt with by state authorities and the individual continues to be harmed, sometimes with tragic circumstances.2 The continued institutionalization of disabled people provides fertile ground for exploitation, violence, and abuse, both through deliberate abuse, alongside the neglect and harmful treatment that result from living in controlled spaces which are frequently under-resourced.3 This abuse may be in the form of physical violence, alongside emotional and psychological abuse. Sexual violence, particularly against women, is common,4 and institutions in particular provide opportunities for this to occur, as both adults and children who are institutionalized may be used to being ignored or silenced, and thus make easy targets for potential abusers.5 The contribution of institutionalization to other forms of exploitation, violence, and abuse was famously noted by Erving Goffman in the 1960s,6 and reiterated by two recent United Nations Special Rapporteurs on Torture.7 1 See eg the range of studies referenced in Peter Bartlett and Marianne Schulze, ‘Urgently Awaiting Implementation: The Right to Be Free from Exploitation, Violence and Abuse in Article 16 of the Convention on the Rights of Persons with Disabilities’ (2017) 53 Int’l J L & Psychiatry 2, 4. 2 eg the tragic case of Steven Hoskin in England in 2006. Steven had refused social care support, and was subsequently murdered by people whom he had considered his friends: Margaret C Flynn, The Murder of Steven Hoskin, A Serious Case Review, Executive Summary (Cornwall Adult Protection Committee 2007). 3 The Non-governmental organization Disability Rights International made international headlines with a report in 2015 into abuse of children and adults with mental disabilities in Mexico City—Priscilla Rodriguez et al, ‘No Justice: Torture, Trafficking and Segregation in Mexico’, (Disability Rights International, 2015), available at: (accessed 3 October 2017). Other examples of such abuses can be found globally, including other reports by DRI on Georgia, Ukraine, the United States, and Guatemala, just within the past decade. 4 As Combrinck notes, there is not a large body of literature on the sexual violence experienced by disabled women, but the existing research does indicate that it is a particular problem, see Helene Combrinck, ‘Promises of Protection? Article 16 of the Convention on the Rights of Persons with Disabilities and Gender-Based Violence in South Africa’ (2017) 53 Int’l J L & Psychiatry 59, 60. 5 Harry Ferguson, ‘Abused and Looked After Children as “Moral Dirt”: Child Abuse and Institutional Care in Historical Perspective’ (2007) 36(1) Journal of Social Policy 123; Janine Benedet and Isabel Grant, ‘Sexual Assault and the Meaning of Power and Authority for Women with Mental Disabilities’ (2014) 22(2) Feminist Legal Studies 131. 6 Erving Goffmann, Asylums: Essays on the Social Situation of Mental Patients and other Inmates (2007 Aldine Transaction). 7 Mannfred Nowak, ‘Interim report of the UN Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment’, UN Doc A/63/175 (28 July 2008); Juan E Méndez, ‘Report of the
keeling
468
Freedom from Exploitation, Violence, and Abuse
Where abuse does occur, criminal sanctions may not be sought for any number of reasons, frequently due to a perception that evidence is unreliable. Rather than criminal sanctions, civil protective measures, frequently through social care, will be put in place.8 Thus, evidence demonstrates that when states do intervene to protect disabled people, and in particular disabled women, the measures employed often result in the removal of control and choice.9 To keep the individual ‘safe’, restrictions are often placed around her life, rather than that of the perpetrator—observation of the disabled person are frequently the result, alongside other controls put in place around her activities—for example, where she can live and with whom she can associate. Specific provisions around protection, therefore, must be approached carefully and considered in light of the ‘paradigm shift’ of the Convention as a whole. In particular, article 16 calls for an awareness that the measures put in place to care for, or protect, disabled people, can be a significant cause of the harm that they experience, and that segregation and isolation from the community allow for abuses of power by those who are supposed to be caring for disabled people. Article 16 also raises the fact that much of the abuse that disabled people experience is the result of the relationships of care they are in and that harm frequently occurs both within the home, as well as outside it. Article 16 extends state obligations beyond the narrow purview of institutions and into a wider variety of arenas, including family relationships and homes.
2. Background and Travaux Préparatoires 2.1 Scope: Types of Harm Included in ‘exploitation, violence and abuse’ A debate that was perhaps deserving of greater attention than it received was the scope of the harms which should fall within article 16. The original wording in Mexico’s draft text of the Convention, at the first session of the Ad Hoc Committee, recognized that disabled people were ‘particularly vulnerable to different forms of violence . . .’, but did not list those forms of violence.10 In the many submissions made at the second session, there were a number of different formulations of rights that recognized various separate harms. Venezuela suggested a right around freedom from sexual abuse and institutional violence,11 while the European Union’s submission made reference to an obligation to protect disabled people from ‘all forms of physical or mental violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation’.12 The Bangkok draft Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment’ UN Doc A/HRC/22/52 (1 February 2013). 8 Anna Lawson, ‘Disabled People and Access to Justice: From disablement to enablement?’ in Peter Blanck and Eilionóir Flynn (eds), Routledge Handbook of Disability Law and Human Rights (Routledge 2017) 88, 92. 9 Amanda Keeling, ‘ “Organising Objects”: Adult Safeguarding Practice and Article 16 of the United Nations Convention on the Rights of Persons with Disabilities’ (2017) 53 Int’l J L & Psychiatry 77. 10 Draft Article 9, Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities, Working Paper by Mexico A/AC265/WP 1 (2002). 11 Article 17, Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, Draft submitted by the Government of the Bolivarian Republic of Venezuela, 18 June 2003 A/AC265/2003/WP 1 (2003). 12 Part III: Autonomy, European Union ‘Elements for an International Convention’ A/AC265/2003/CRP 13/Add 2 (2003).
keeling
Article 16
469
recommendations made a similar requirement,13 while DPI Japan called for an obligation around economic exploitation.14 However, the Draft Elements produced by the Chair of the Working Group as a basis for discussion at the Working Group, introduced an obligation to protect from ‘all forms of physical or mental violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation, including sexual abuse’,15 echoing the list in article 19 of the CRC. This list was changed slightly in the final draft text submitted to the third session of the Ad Hoc Committee by the Working Group, stating that the obligation was to protect from ‘all forms of violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation, including sexual exploitation and abuse’.16 This iteration of the Convention situated the right to freedom from violence and abuse as a separate right, with a significant expansion of content. Now included was a requirement to protect disabled people from ‘forced interventions or forced institutionalization aimed at correcting, improving or alleviating any actual or perceived impairment, and abduction’ and to prohibit such action in draft article 12(2). As is recounted in the following section, the presence of this paragraph dominated the negotiations on article 16, leaving the discussions around other types of harm somewhat lacking. There was, however, some discussion at the third session as to what harms should be included in the list in paragraph 1. Many contributors called for a longer list that added other harms, including a distinction between mental and physical abuse,17 abandonment,18 economic exploitation,19 sexual exploitation,20 harassment,21 victimization,22 and emotional abuse.23 There was also a call to move abduction from the contentious paragraph 2 into the list in paragraph 1.24 Following the discussions, the Mexican delegation revised its proposal to include a list of harms that reflected the discussion, providing a list in the first paragraph that was significantly longer than the Working Group text. This stated as follows: 1. State Parties recognize that persons with disabilities are at greater risk, both within or outside the home, of abandonment, violence, injury or mental or physical abuse, neglect or negligent treatment, maltreatment or exploitation, including sexual and economic exploitation and abuse.25 13 Bangkok recommendations on the elaboration of a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities, Outcome of an expert group meeting and seminar held in Bangkok at the headquarters of the Economic and Social Commission for Asia and the Pacific from 2 to 4 June 2003 A/AC265/2003/CRP/10 (2003). 14 Compilation of proposals for a Comprehensive and Integral Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities, Add 1, NGO contributions to the elements of a convention A/AC265/CRP 13, Add 1 (2003). 15 Article 13, Chair’s Draft Elements of a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities (December 2003). 16 Draft Article 12, United Nations Ad Hoc Committee, Working Group to draft a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, Report to the Ad Hoc Committee, Annex I A/AC265/2004/WG/1 (2004). 17 United Nations, Ad Hoc Committee, Daily summary of discussions related to article 12, Freedom from Violence and Abuse (26–27 May 2004) per Costa Rica and Mexico. 18 ibid per Republic of Korea. 19 ibid per New Zealand, Mexico, Serbia and Montenegro, Australia Disability Inc. 20 21 ibid per New Zealand. ibid per Australia Disability Inc. 22 23 24 ibid per Australia Disability Inc. ibid. ibid per European Union. 25 United Nations, Ad Hoc Committee, Proposals to the draft text—Mexico, available at: .
keeling
470
Freedom from Exploitation, Violence, and Abuse
At the fourth Ad Hoc session, there was further support for the reference to abandonment,26 economic abuse,27 harassment,28 and abduction.29 China and Argentina’s draft submissions removed mention of sexual violence, while South Africa argued for its continued inclusion, as it was a common form of ‘dehumanizing’ abuse faced by disabled people.30 By the fifth session, there was still disagreement as to how to approach this issue.31 South Africa suggested a form of words close to the final text in article 16, which removed a list of types of harm and instead called for protection from ‘all forms of neglect, exploitation, violence and abuse’.32 Australia, supported by New Zealand, suggested a wording which made it clear that the harms listed were not exhaustive, stating the obligation to protect from ‘all forms of harm, including . . .’, but it was clear that if harms were to be listed there was disagreement about what those should be.33 There was particular disagreement around the specific reference to economic exploitation. New Zealand, Chile, and Jordan argued for its inclusion, while Russia was concerned it was too vague a term.34 Jordan observed that the phrase did appear elsewhere in international human rights law, specifically in article 32 of the Convention on the Rights of the Child,35 but the European Union was opposed to citing it together with sexual exploitation.36 There was significant support for the South African approach, as it left the scope of the article open and could include a wide range of harms. This was the approach adopted in the text from this point onwards, but there continued to be debate on the issue. At the seventh session of the Ad Hoc Committee, Canada called for a specific reference to gender-based violence, while Mexico continued to call for a non-exhaustive list.37 The final text of article 16(1) recognized Canada’s concerns, making specific mention of the inclusion of the ‘gender-based aspects’ of exploitation, violence, and abuse within the scope of article 16. However, Mexico’s call for a non-exhaustive list of examples was not taken up, and the text remained from the seventh session as it now appears in the final text of the Convention, referring simply to ‘all forms of exploitation, violence and abuse’.
2.2 Torture, Involuntary Treatment, and Informed Consent The most significant and contentious discussions on article 16 concerned its overlap with torture, and particularly involuntary treatment and institutionalization in this context. The issue of involuntary treatment as an incidence of torture, cruel, or inhuman and degrading treatment or punishment has long been a question for international human rights law, particularly in the context of mental health. It has generally been held in
26 United Nations Ad Hoc Committee, Daily summary of discussions related to Article 12, Freedom from Violence and Abuse (26 August 2004), available at: per Chile, Serbia and Montenegro, and Venezuela. 27 28 29 ibid per Lebanon. ibid per Norway. ibid per European Union and Norway. 30 United Nations Ad Hoc Committee, Daily summary of discussions related to Article 12, Freedom from Violence and Abuse (26 August 2004), available at: . 31 Daily summary of discussion at the fifth session (28 January 2005), available at: and (31 January 2005), available at: . 32 ibid. 33 ibid. 34 ibid. 35 ibid. 36 ibid. 37 Daily summary of discussions at the seventh session (19 January 2006), available at: .
keeling
Article 16
471
human rights law that treatment of ‘competent’ patients should not take place without informed consent,38 but this raised the question of therapeutic treatment for mental health patients who were considered unable to consent.39 Human rights jurisprudence has held that treatment which would otherwise be considered in violation of the threshold for inhuman or degrading treatment or punishment should not be considered so where there was a ‘therapeutic’ justification.40 The United Nations Special Rapporteur on Torture called this approach into question in his 2013 report,41 but such a strong statement did not exist at the time of the negotiations on the CRPD in 2003–2006—and arguably, the Special Rapporteur’s statements were themselves influenced both by the Convention and the forceful points made by Disabled People’s Organizations (DPOs) and some member states during the negotiations. As has been recounted in the previous chapter, the issue of involuntary treatment and institutionalization was widely debated in the negotiations on article 15, but the disagreements over how this issue should be approached also dominated the discussions on article 16, given the overlap between the two rights. Whether or not the issue of exploitation, violence, and abuse was a separate issue to the action prohibited by the right to be free from torture, cruel, or inhuman, or degrading treatment or punishment was an early point of discussion. Treatment which falls short of torture is often caught by the latter prohibitions on cruel, inhuman, or degrading treatment or punishment and the actions which fall within this scope arguably overlap significantly with those in article 16, with the exceptions being economic exploitation and harassment.42 Both of these are significant problems for disabled people, but neither easily falls within the scope of torture.43 It was clear even from the first iteration of the right in Mexico’s draft text, which was submitted to the first session of the Ad Hoc Committee, that the issue of violence as something separate from, or additional to, torture, should be considered in the scope of a right for disabled people. This was couched in the following terms: States Parties recognize that persons with disabilities are particularly vulnerable to different forms of violence, as well as torture and other cruel, inhumane or degrading treatment or punishment, in public and private spheres. Therefore, States shall guarantee respect for the dignity and integrity of persons with disabilities.44
At that first session, it was noted in submissions that the UN Convention Against Torture (UNCAT) had been used by disabled people to gain human rights protection from violence, but the submissions to the second session began to call for a separate article to deal 38 See eg the European Committee for the Prevention of Torture 8th General Report, CPT/Inf (98) 12, and CPD Standards, CPT/Inf/E (2002) 1-Rev 2011. 39 Though, of course, the link between mental capacity and the legal capacity to consent has been challenged by the Committee’s interpretation of article 12—see United Nations Committee on the Rights of Persons with Disabilities, General Comment on Article 12 UN Doc CRPD/C/GC/1 (2014) para 13. 40 Herczegfalvy v Austria, European Court of Human Rights, Application no 10533/83, 24 September 1992; Further discussion in Peter Bartlett and Ralph Sandland, Mental Health Law: Policy and Practice, (OUP 2014) 418–19. 41 United Nations Special Rapporteur on Torture, Report to Un General Assembly UN Doc A/HRC/22/ 53 91 (February 2013). 42 Bartlett and Schulze, ‘Urgently Awaiting Implementation’ (n 1) 2, 8. 43 The issue of harassment was considered by the European Court of Human Rights in Đorđević v Croatia, Application no 41526/10, judgment 24 October 2012. While the physical mistreatment was dealt with under article 3, the harassment was considered to fall within article 8. 44 Draft article 9 (n 10) Working Paper by Mexico.
keeling
472
Freedom from Exploitation, Violence, and Abuse
specifically with the issue of exploitation, violence, and abuse. At this stage, the suggested right was conceptualized in a number of different ways, overlapping with a number of different issues, each of which recognized specific abuses that disabled people were (and remain) subjected to. However, the World Network of Users and Survivors of Psychiatry (WNUSP) suggested a right to freedom from torture, right to life, liberty, bodily and mental integrity, which encompassed issues of abuse and exploitation focused specifically around involuntary interventions and detention, an issue which subsequently became the focus of the negotiations.45 The Draft Elements produced for discussion at the Working Group by the Chair, in December 2003,46 maintained the issue of violence and abuse as part of a wider right to be free from torture, inhuman, or degrading treatment or punishment. Other contributions to the Working Group also recognized the issue of abuse and exploitation of disabled people, particularly in the context of institutionalization,47 and how this was to be framed in the context of a specific right became a key point of contention in the later sessions of the Ad Hoc Committee. By the end of the Working Group, however, there was a specific and separate right to freedom from violence and abuse, in the form of draft article 12.48 This draft formed the basis for discussions at the third session of the Ad Hoc Committee, which centred in particular around paragraph two, which stated that: Such measures [in paragraph 1] should prohibit, and protect persons with disabilities from, forced interventions or forced institutionalization aimed at correcting, improving or alleviating any actual or perceived impairment, and abduction.49
The discussion around the need to keep a right to freedom from violence and abuse as a separate provision thus began to centre on the issue of how forced intervention and institutionalization was to be dealt with in the Convention. Ireland, representing the European Union, suggested an amendment that permitted forced intervention and institutionalization in ‘exceptional circumstances’, as did Canada.50 In contrast, WNUSP called for the retention of such a provision in both draft article 11 on torture and draft article 12. This allowed for a strong framing of such interventions as treatment amounting to torture, cruel, inhuman or degrading treatment or punishment, but its inclusion in draft article 12 also allowed for a recognition that such actions could take place in private, by non-state actors.51 The debate continued into the fourth session, where it became a significant point of contention. A number of parties to the negotiations, both states and DPOs, entered substantial amendments to draft article 12 and there were a number of disagreements around how the issue of forced intervention and institutionalization should be dealt
NGO Contributions to the elements of the Convention, A/AC265/2003/CRP/13 Add 1 (2003). Chair’s Draft Elements of a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities (December 2003), available at: . 47 See eg the EU Proposal for the text of an International Convention on the Full and Equal Enjoyment of all Human Rights and Fundamental Freedoms by Persons with Disabilities, available at: , and Convention on Rights of Persons with Disabilities, A Proposed draft text by China, available at: . 48 49 Draft Article 12, United Nations Ad Hoc Committee, Working Group (n 16). ibid. 50 United Nations, Ad Hoc Committee, Daily summary of discussions related to article 12, Freedom from Violence and Abuse, (26–27 May 2004), available at: . 51 ibid. 45 46
keeling
Article 16
473
with, and in particular the place of informed consent in this process.52 The DPOs, and in particular WNUSP, wanted a complete prohibition of involuntary treatment and institutionalization. States parties, in contrast, wished to retain the provisions, although there was disagreement as to how this should be achieved. The EU’s amendment altered every section of the text from the Working Group report, and redrafted article 12(2) by replacing it with four further paragraphs that provided for a partial prohibition of forced interventions. Their suggested text, however, allowed for an exception where the individual ‘lacks capacity to give or withhold informed consent’, in situations where an intervention was necessary to ‘prevent an imminent danger’ to the individual or others, and that any such interventions would be carried out in the individual’s best interests.53 In contrast, New Zealand took a stronger line. The debate around torture had become so entangled with questions around involuntary treatment that New Zealand advocated an entirely separate article on the issue of free and informed consent.54 In its submission it advocated the abolition of involuntary treatment along with forced institutionalization on the basis of disability. Where involuntary treatment had not been abolished, its submission stated that it should only be used in ‘exceptional circumstances prescribed by law and minimised through the active promotion of alternatives’. As a result, its submitted amendment regarding draft article 12 removed paragraph 2 entirely and added in article 12(1) a clause moved from article 11 stating that states had an obligation to: a. prevent persons with disabilities from being subjected to torture or cruel, inhuman or degrading treatment or punishment.
In its written submission, New Zealand stated that there should never be any permitted exceptions to violence and abuse. It considered that these abuses were so serious that they should be framed in a discrete article and a prohibition should not be diluted or confused with issues around informed consent. It considered that if its suggestion for a specific article on informed consent was to replace the specific article on torture, then the duty to prevent torture should also be included in draft article 12.55 As has been documented in this volume and elsewhere,56 this disagreement around the importance of informed consent and the issue of capacity was a significant point of tension in the Convention negotiations. The issue of legal capacity, which became article 12 in the final text, was a key point for many DPOs involved in the negotiations, while the idea of universal legal capacity—and the potential prohibition of involuntary treatment and substitute decision-making—was a particular objection of states. The main focus of debate around the correct interpretation of the Convention since the finalization of the
52 See Contributions submitted by Governments in electronic format at the Fourth Session; Proposed Modifications to Draft Article 12, available at: , and NGO Comments on the draft text, available at: . 53 Proposals to the draft text—European Union, available at: . 54 Contributions submitted by Governments in electronic format at the Fourth Session, Proposed Modifications to Draft Article 11, available at: . 55 Contributions submitted by Governments in electronic format at the Fourth Session, Proposals to the Draft Text—New Zealand, available at: . 56 Amita Dhanda, ‘Legal Capacity in the Disability Rights Convention: Stranglehold of the Past or Lodestar for the Future?’ (2006–07) 34 Syracuse J Intl & Com 429.
keeling
474
Freedom from Exploitation, Violence, and Abuse
text and its coming into effect has been around the right to equality before the law as enshrined in article 12.57 Moreover, the debate around informed consent with regard to violence and abuse shows how key the issue of legal capacity is to the general understanding of many of the other rights in the Convention. The issue remained unresolved until the fifth session. The facilitator’s text58 and the proposed modifications by the EU59 still retained provisions for involuntary interventions in the individual’s best interests within draft article 12. In contrast, New Zealand highlighted that ‘institutionalisation and involuntary care for disabled people has violated many individual human rights [. . .] and perhaps constitute one of the most appalling ongoing and systematic abuses of human rights experienced by disabled people across the globe’.60 It considered that a more effective approach was needed in the Convention to deal with this and that, similar to the draft article on legal capacity, ‘this issue requires a “paradigm” or “conceptual” shift in our thinking to ensure a forward looking convention, and one that does not erode existing human rights’.61 It reiterated its view that the issues of torture or cruel, inhuman, or degrading treatment or punishment, and violence and abuse were so serious that they should not be diluted or obscured by issues around informed consent and the latter should be dealt through a separate article.62 The European Union agreed with this approach at the fifth session, calling for a separate provision around medical treatment, which would accommodate disabled people who were unable
57 See eg Anna Arstein-Kerslake, ‘An Empowering Dependency: Exploring Support for the Exercise of Legal Capacity’ (2016) 18 Scandinavian Journal of Disability Research 77; Michael Bach and Lana Kerzner, A New Paradigm for Protecting Autonomy and the Right to Legal Capacity (Ontario 2010); Peter Bartlett, ‘The UN Convention on the Rights of Persons with Disabilities and Mental Health Law’ (2012) 75 MLR 752; Terry Carney, ‘Clarifying, Operationalising, and Evaluating Supported Decision Making Models’ (2014) 1 Research and Practice in Intellectual and Developmental Disabilities 46; Nandini Devi, Jerome Bickenbach, and Gerold Stucki, ‘Moving Towards Substituted or Supported Decision-Making? Article 12 of the Convention on the Rights of Persons with Disabilities’ (2011) 5 European Journal of Disability Research 249; Eilionóir Flynn and Anna Arstein-Kerslake, ‘Legislating Personhood: Realising the Right to Support in Exercising Legal Capacity’ (2014) 10 Int JLC 81; Eilionóir Flynn and Anna Arstein-Kerslake, ‘The Support Model of Legal Capacity: Fact, Fiction, or Fantasy?’ (2014) 32 Berkeley J Int’l Law 124; Piers Gooding, ‘Navigating the “Flashing Amber Lights” of the Right to Legal Capacity in the United Nations Convention on the Rights of Person with Disabilities: Responding to Major Concerns’ (2015) 15 Human Rights Law Review 45; Gerard Quinn, ‘Personhood & Legal Capacity: Perspectives on the Paradigm Shift of Article 12 CRPD’ (Harvard Project on Disability 2010); Lucy Series, ‘Relationships, Autonomy and Legal Capacity: Mental Capacity and Support Paradigms’ (2015) 40 Int’l J L & Psychiatry 80; Jill Stavert, ‘The Exercise of Legal Capacity, Supported Decision-Making and Scotland’s Mental Health and Incapacity Legislation: Working with CRPD Challenges’ (2015) 4 Laws 296; Katherine D Villar, ‘Should Supported Decision-Making Replace Substituted Decision-Making? The Convention on the Rights of Persons with Disabilities and Coercive Treatment under Queensland’s Mental Health Act 2000’ (2015) 4 Laws 173; Penelope Weller, ‘Supported Decision-Making and the Achievement of Non-Discrimination: The Promise and Paradox of the Disabilities Convention’ in B McSherry (ed), International Trends in Mental Health Law (Federation Press 2008). 58 United Nations Ad Hoc Committee on the Rights of Persons with Disabilities, Facilitators Proposed Modifications on Draft Articles (31 January, 2005), available at: . 59 Contributions by Governments; European Union, available at: . 60 Contribution by Governments, New Zealand, Proposed modifications to draft Articles 11, Freedom from Torture or cruel, inhuman or degrading treatment or punishment and 12, Freedom from violence and abuse, available at: . 61 ibid. 62 Although, as is noted later in this chapter, the issues around institutionalization and involuntary treatment continued to be of foremost importance to the CPRD Committee in relation to article 16 in their General Comment on Article 12 UN Doc CRPD/C/GC/1.
keeling
Article 16
475
to express consent. This was supported by a number of other future member states.63 However, others remained concerned that some forms of institutionalization could, and should, fall within the concept of torture,64 as could social interventions such as removing a child from the home,65 sterilization,66 and organ donations.67 It was recognized during these discussions that there was significant overlap with the issue of informed consent and the discussions around draft article 9 and the issue of legal capacity, but the issue was not revisited again in relation to draft article 12. The final text of article 16 does not contain reference to involuntary treatment or institutionalization, but the issue was specifically referenced by the CRPD Committee in General Comment No 1 on article 12.68 This focus during the negotiations was, and remains, perhaps unfortunate, as the other types of harm which could fall within the scope of article 16 were discussed in much less detail than they seem to have warranted, given the wide level of such abuse and exploitation that occurs outside of the context of psychiatric treatment. In particular, the issue of abuse in private residences, and the structure of State obligations to monitor and prevent such abuse, was little explored, although the scope of the article does take this into account.
2.3 Vulnerability of Disabled People and Prevention of Harm The next significant issue which was raised at an early stage in the negotiations was the issue of the ‘vulnerability’ of disabled people with regards to violence. The wording of draft article 9 presented by Mexico at the first session of the Ad Hoc Committee called for states to ‘recognize that persons with disabilities are particularly vulnerable to different forms of violence’, while a draft article 4(2) suggested that ‘special measures’ of protection were required for disabled people because of their ‘special situations of vulnerability’.69 There were several voices of disquiet with regard to this wording at the Seminar of Quito.70 It was generally felt that this suggested that disabled people were ‘inherently’ vulnerable to harm and therefore in need of protection—though this objection was mainly made about draft article 4, which concerned people with profound disabilities, rather than draft article 9. Even so, it was suggested at this point that issues of ‘overprotection’ should be added to the text of draft article 9, recognizing the problems this can cause.71 This position suggests that people with severe or profound disabilities were seen as being ‘at special risk’ of experiencing a violation of their rights and freedoms and that specific measures were needed to be taken to protect them from violence and abuse.
63 Daily summary of discussion at the fifth session (28 January 2005), available at: (accessed 10 June 2017), per Serbia and Montenegro, Australia, Liechtenstein, Norway, and Canada. 64 Daily summary of discussion at the fifth session (31 January 2005), available at: per Japan and Thailand. 65 66 67 ibid per Israel. ibid per Yemen. ibid per Uganda. 68 United Nations Committee on the Rights of Persons with Disabilities, General Comment on Article 12 (2014) CRPD/C/GC/1 para 42. 69 Draft Article 9 (n 10) Working Paper by Mexico. 70 Compilation of proposals for a Comprehensive and Integral Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities A/AC.265/CRP 13, Add 1 & Add 2. The Seminar of Quito, or in full the Américas Regional Seminar and Workshop on Norms and Standards Related to the Rights of Persons with Disabilities and Development, was one of a number of expert meetings and seminars held to discuss the idea of, and then the potential content of, a United Nations human rights convention on disability rights. A full list of the meetings can be found at: . 71 ibid.
keeling
476
Freedom from Exploitation, Violence, and Abuse
However, it was also suggested during the Seminar at Quito that vulnerability should be understood as a ‘universal’ issue and that the cause was the ‘uneven distribution of risks’ and in particular the risk of poverty. It was argued that the approach to vulnerability should be to work to mitigate this risk, alongside the development of community and social institutions, and education—with a specific focus on inclusivity.72 This issue received relatively little discussion at the Working Group, with just a few references to the special or ‘heightened’ vulnerability of disabled people, or specific impairment groups. However, the text presented for discussion at the Third Ad Hoc session suggested that disabled people should be seen as being at greater risk of harm, stating in draft article 12(1) that: States Parties recognize that persons with disabilities are at greater risk, both within and outside the home, of violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation, including sexual exploitation and abuse. [ . . . ]73
The main discussion around this issue of risk was for a continued recognition that disabled people were at a greater risk of harm than non-disabled people, but that some groups of disabled people were ‘more’ at risk than others was expressed, particularly women and children.74 The issue of whether disabled people were any more, or less, vulnerable to abuse than non-disabled people continued to be a point of discussion at the fourth session of the Ad Hoc Committee and Japan specifically noted that care must be taken in the drafting of the article to ensure that disabled people were not cast as ‘vulnerable and necessarily targets of abuse’.75 This reflects the disquiet voiced at the Seminar at Quito that the wording of the draft provisions suggested that disabled people were inherently vulnerable. At the Fifth Session of the Ad Hoc Committee, which was the last time the provisions around exploitation, violence, and abuse were discussed in any significant detail, this issue was revisited a final time. The facilitator’s text did include a reference to the ‘particular vulnerability’ of disabled people in the context of armed conflict,76 and the International Disability Caucus’ suggested text included a broader claim, stating in draft article 12(1) that ‘States Parties recognize that persons with disabilities may be at greater risk, both within and outside the home, of all forms of violence and abuse.’77 Additionally, the issue of the ‘particular vulnerability’ of women and girls was raised by Canada. Ultimately, this position is what has been enshrined in the final text of 16(1), with the final part of the paragraph making particular reference to the ‘gender-based aspects’ of exploitation, violence, and abuse. The particular experience of harm by women and girls has also been the
73 ibid. Draft Article 12, United Nations Ad Hoc Committee, Working Group (n 16). United Nations, Ad Hoc Committee, Daily summary of discussions related to article 12, Freedom from Violence and Abuse (26–27 May 2004), available at: per Australia Disability Inc. 75 United Nations Ad Hoc Committee, Daily summary of discussions related to article 12, Freedom from Violence and Abuse (26 August 2004), available at: . 76 Facilitators Proposed Modifications on Draft Articles, draft article 12(1)(3), available at: . The issue of disabled people’s vulnerability in situations of armed conflict was actually visited a number of times in the negotiations, particularly by Palestine, and did appear to be in part politically motivated in the context of the Israel-Palestine conflict. Ultimately, the issue was dealt with in a separate provision, in article 11. 77 Contributions made at the Fifth Session, NGO Comments on the Draft Text, available at: . 72 74
keeling
Article 16
477
focus of the Committee’s early work on interpretation of the Convention, in its General Comment No 3 on article 6.78 The issue of the general vulnerability of disabled people was removed from the final text and there is no reference to any specific vulnerability of disabled people as a broad group. That disabled people do experience greater levels of exploitation, violence, and abuse is a fact and effectively constitutes the ultimate motivation for article 16. The response of states to this increased level of harm has frequently been to remove disabled people from society to an institution. However, segregating disabled people from society in institutions, where they cannot be seen, leads to abuse and violence, a point made by both New Zealand and Uganda at the Third Ad Hoc Session—thus de-institutionalization is an important part in removing a social cause of exploitation, violence, and abuse. Even where large institutions are not used, disabled people may still be removed from the place of abuse to a group home or into an adult foster/guardianship placement. While this may work to protect the disabled person from the immediate harm, it does little to prevent such harm reoccurring in the future and additionally works to undermine the individual’s other Convention rights.79 The central ethos of the CRPD is the ‘paradigm shift’ to a socio-contextual approach to disability, which focuses on the removal of social barriers to exclusion of disabled people from society, along with the social causes of harms.80 In this context, the response to harm cannot be to consider that disabled people are ‘inherently vulnerable’, but to focus on what social issues may be causing the harm.81 In the context of a policy of greater inclusion of disabled people within society, the protection offered to disabled people cannot take the form of segregation. Moreover, within the wider aim of the Convention which is to afford disabled people equal enjoyment of rights with non-disabled people the answer cannot be to remove rights, by removing someone from a place they choose to live, or from people with whom they choose to associate. The final text of article 16 does not retain any reference to the particular vulnerability of disabled people, nor a reference to a ‘greater risk’ of harm. It is also noticeable that the language of article 16 is not only framed in terms of ‘protection’, but also active ‘prevention’ centred around the disabled person, suggesting that article 16 should not be interpreted as a back door to out-dated, paternalistic models of protection. While article 16(1) is framed in the language of ‘protection’, the other provisions focus around the prevention of harm and deal with the physical and psychological after-effects. The incorporation of preventative obligations into article 16 was not entirely without contest, with some parties considering it unnecessary repetition, while others felt that it was important to emphasize this aspect of state obligation. The language of prevention appears for the first time in the European Union’s draft Convention at the Third Ad Hoc session with regards to cruel, inhuman, or degrading treatment of persons with
CRPD Committee, ‘General Comment on Article 6’ UN Doc CRPD/C/GC/3 (2016). Keeling, ‘Organising Objects’ (n 9). 80 Rosemary Kayess and Philip French, ‘Out of Darkness into Light? Introducing the Convention on the Rights of Persons with Disabilities’ (2008) 8 HRLR 1; Gerard Quinn, Personhood & Legal Capacity: Perspectives on the Paradigm Shift of Article 12 CRPD (Harvard Project on Disability 2010); Rannveig Traustadóttir, ‘Disability Studies, the Social Model and Legal Developments’ in G Quinn and OM Arnardóttir (eds), The UN Convention on the Rights of Persons with Disabilities: European and Scandinavian Perspectives (Martinus Nijhoff Publishers 2009). 81 Andrea Hollomotz, ‘Beyond “Vulnerability”: An Ecological Model Approach to Conceptualizing Risk of Sexual Violence against People with Learning Difficulties’ (2009) 39 British Journal of Social Work 99. 78 79
keeling
478
Freedom from Exploitation, Violence, and Abuse
disabilities; in contrast, the following provision around exploitation, violence, and abuse only features a duty to protect.82 The Chair’s draft text at the Third Ad Hoc Session is worded in a similar way, with a phrase that has eventually survived intact through to the final Convention: States Parties shall take all appropriate legislative, administrative, social and educational measure to protect persons with disabilities [ . . . ]83
However, the text presented at the Working Group follows a structure similar to that of the final Convention provision. Paragraph 1 concerns the protection of disabled people, but paragraph 3 places an obligation to prevent harm through support and paragraph 4 through effective monitoring.84 This document formed the basis of discussion at the third session of the Ad Hoc Committee and during the discussion Mexico argued that the focus of article 16 should be on prevention of exploitation, violence, and abuse, rather than just protection. Moreover, it argued that this should be made clear at the outset in paragraph 1, suggesting the following for what was then draft article 12(1): [ . . . ] States Parties shall therefore take all appropriate measures to protect persons with disabilities, both within and outside the home, from all forms of violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation, including sexual exploitation and abuse, and to prevent these forms of violence and abuse. [Mexico’s text emphasis added].85
In contrast, the European Union had suggested that the text of draft article 12(3) on prevention overlapped with the text in 12(1) to the extent that 12(3) could be omitted entirely.86 By the fifth session of the Ad Hoc Committee, the draft Convention retained a separate provision around prevention, featuring in the Facilitator’s Text draft article 12(2), which at the time stated that: States Parties shall also take all appropriate measures to prevent violence and abuse by ensuring, inter alia, appropriate forms of assistance and support for persons with disabilities and their caregivers, including through the provision of information and education on how to avoid, recognize and report instances of (violence and abuse) above.87
The wording ‘shall also take’ remains through to the final version of the Convention, and suggests that the obligations to protect and to prevent are seen as linked but separate obligations on states. At the fourth session of the Ad Hoc Committee, Mexico had called for the addition of education and training to the requirements of the preventative measures, but it is not clear to whom these refer—whether to disabled people themselves, or to their carers and
82 Proposals for draft articles of the draft International Convention submitted by Ireland on behalf of the European Union, available at: . 83 Article 13, Chair’s Draft Elements of a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities (December 2003), available at: . 84 Draft Article 12, United Nations Ad Hoc Committee, Working Group (n 16). 85 Proposals to the Draft Text—Mexico (27 May 2004), available at: . 86 United Nations, Ad Hoc Committee, Daily summary of discussions related to article 12, Freedom from Violence and Abuse (26–27 May 2004), available at: . 87 Facilitators Proposed Modifications on Draft Articles (31 January 2005), available at: .
keeling
Article 16
479
families, or all three groups.88 At the Fifth Ad Hoc Session the Coordinator raised this question, asking if there should be a ‘notion’ of educating disabled people and their families around exploitation, violence and abuse.89 It was agreed that an obligation to provide support and particularly access to ‘support groups’ for disabled people was desirable, but there were questions around whether there should be a right to these groups for families and caregivers, linked to the more general question of their rights under the Convention. In addition to this, there was a call for information around abuse in accessible formats and the International Disability Caucus called for a provision requiring ‘information, support and education for persons with disabilities, their families, and persons working with persons with disabilities about how to avoid, recognise, report and seek protection from violence and abuse’.90 At the Seventh Ad Hoc Session, the IDC representative also noted the importance of supportive environments in assisting disabled people to feel safe enough to disclose instances of abuse and called for training of professionals and families, as well as disabled people, to learn to recognize signs of abuse and how to report safely.91 The final text of article 16, therefore, reflects this discussion, with separate obligations in article 16(1) to protect and in 16(2) to prevent harm. The latter obligation is phrased to emphasize that the prevention should be about enabling the disabled person to recognize and report harm and to be supported in doing so, rather than be removed from society in order to prevent harm occurring to him or her. However, it is difficult to separate these two obligations, as will be seen in the discussion below of the specific state obligations under article 16.
3. Paragraph 1 3.1 ‘All appropriate legislative, administrative, social, education and other measures to protect’ The first requirement in article 16(1) is that states parties must take ‘all appropriate legislative, administrative, social, education and other measures’ to protect persons with disabilities. The phrase ‘all appropriate measures’ is a common phrase in international human rights instruments and appears elsewhere in the Convention, as well as in other paragraphs of article 16. The phrasing in article 16 echoes that found in article 19 CRC and it is clear that article 16 intends the scope of the protective measures it requires to be very broad, ranging across a number of spheres of state responsibility. This is not something to be confined to the criminal justice process, but must be expanded into social, education, and ‘other’ measures. The word ‘appropriate’ should not be taken to mean that some forms of exploitation, violence, or abuse are permissible. 88 United Nations Ad Hoc Committee, Daily summary of discussions related to Article 12, Freedom from Violence and Abuse (26 August 2004) available at: . 89 Daily summary of discussion at the fifth session (28 January 2005), available at: , and (31 January 2005), available at: . 90 Contributions made at the Fifth Session, NGO Comments on the Draft Text, International Disability Caucus, draft article 12(e), available at: . 91 United Nations Ad Hoc Committee on the Rights of Persons with Disabilities, Summary of Daily Discussions at the Seventh Session (19 January 2006), available at: .
keeling
480
Freedom from Exploitation, Violence, and Abuse
The scope in paragraph 1 is notably more expansive than the similar wording in article 2 of the Convention, which refers to the need for ‘effective legislative, administrative, judicial or other measures’ to prevent torture.92 Neither that list, nor the one in article 16 CRPD, are intended to be exhaustive, allowing for ‘other measures’ to be included. Even so, interpretations concerning the right to be free from torture, cruel, inhuman, or degrading treatment or punishment have generally focused on issues such as the judicial oversight of arrest and detention93 and monitoring of places of detention94, rather than ‘other measures’. That said, the United Nations has recommended both professional training and the promotion of public awareness as key issues in the prevention of torture,95 thus the scope of the preventative obligations under article 16 CRPD retain a significant overlap with obligations to prevent torture in article 15 CRPD. There is little guidance from the CRPD Committee as to the extent to which the obligations in paragraph 1 of article 16 extend beyond legislative and administrative elements, as the concluding observations available to date have primarily focused on these first two. A common observation has been the lack of evidence of any legislative or policy framework dealing with the exploitation of, or abuse or violence aimed at, disabled people.96 Equally, the committee has criticized the lack of sufficient funding for any such strategies.97 Given the significant overlap with article 15 CRPD—and the clear nature of article 16 as derived from classic prohibitions on torture—the right to freedom from exploitation, violence, and abuse should be seen as a civil and political right and therefore not subject to progressive realization.98 It is clear from the concluding observations currently available that the Committee is setting a high standard of expected state action, praising some states for the measures they have taken thus far, but still requiring further action. For example, Austria was praised for the work of its Ombudsman investigating institutional mistreatment, but the Committee remained concerned at the number of continued reports of exploitation, violence, and abuse of disabled people, recommending ‘further measures’ be taken to protect disabled people from exploitation, violence, and abuse.99
Art 2(1) CAT. eg see General Comment No 2 (Committee on the Prevention of Torture, General Comment No 2 UN Doc CAT/C/GC/2 (24 January 2008). 94 This has included a focus on healthcare settings, however—see eg Juan E Méndez, ‘Report of the Special Rapporteur on Torture and other Cruel, Inhuman or Degrading Treatment or Punishment’ UN Doc A/HRC/ 22/52 (1 February 2013). 95 Barbara Bernath, ‘Preventing Torture: An Operational Guide for National Human Rights Institutions’ HR/PUB/10/1 (OHCHR, APT, and AFP, 2010). 96 CPRD Committee, ‘Concluding Observations on the initial report of the Czech Republic’ UN Doc CRPD/C/CZE/CO/1 para 35; ‘Concluding Observations on the initial report of El Salvador’ UN Doc CRPD/ C/SLV/CO/1 (8 October 2013) para 35; ‘Concluding Observations on the initial report of Gabon’ UN Doc CRPD/C/GAB/CO/1 (2 October 2015) para 38; ‘Concluding Observations on the initial report of Germany’ UN Doc CRPD/C/DEU/CO/1 (13 May 2015) para 35; ‘Concluding Observations on the initial report of Kenya’ UN Doc CRPD/C/KEN/CO/1 (30 September 2015) para 31; ‘Concluding Observations on the initial report of Paraguay’ UN Doc CRPD/C/PRY/CO/1 (15 May 2013) para 40; ‘Concluding Observations on the initial report of Qatar’ UN Doc CRPD/C/QAT/CO/1 (2 October 2015) paras 31–32. 97 CPRD Committee, ‘Concluding Observations on the initial report of Kenya’ UN Doc CRPD/C/KEN/ CO/1 (30 September 2015) para 31. 98 This is also true of article 19 CRC; see United Nations Committee on the Rights of the Child, General Comment No 13 UN Doc CRC/C/GC/13 para 73. 99 CPRD Committee, ‘Concluding Observations on the initial report of Austria’ UN Doc CRPD/C/AUT/ CO/1 (30 September 2013) para 35. 92 93
keeling
Article 16
481
3.2 ‘Within and outside the home’ Paragraph 1 goes on to state that the obligation to protect disabled people from exploitation, violence, and abuse applies both ‘within and outside the home’. This obligation is to be welcomed, as while disabled people certainly experience violence and abuse within institutional settings, there is also a significant amount of abuse outside of these environments. However, the ethos of the Convention is to move away from the ‘old’ paradigms of how disabled people were conceptualized in law and treated by the state. On this basis, the requirement that disabled people be protected in their homes as well as institutions should be carefully read. The provision, as is the case with the entirety of article 16, is clearly responding to the high level of recorded and/or reported violence against disabled people,100 a significant amount of it domestic, but this should not be seen as an opening to allow or continue paternalistic protective practises. Notably absent from the text of article 16 is the phrase ‘on an equal basis with others’, which appears in almost every other substantive right in the Convention,101 and is reflective of the mandate of the Ad Hoc Committee to clearly restate existing human rights in the context of, and with specific application to, disabled people. The absence of the phrase from article 16 could be understood to suggest that disabled people must be treated ‘differently’ from non-disabled people with regards to protection and in particular as an argument for intrusion into their private lives. However, such an interpretation needs to pay heed to both the wider construction of article 16 and the Convention as a whole. An important aim of the Convention is to work towards a greater inclusion of disabled people in society, as full citizens; the response to a higher risk of harm, therefore, cannot be to isolate or exclude disabled people from society, but work to integrate them—obligations placed on states in the context of exploitation, violence, and abuse by article 16(4). The absence of the phrase ‘on an equal basis with others’ reflects the greater experience by disabled people of exploitation, violence, and abuse and the need for specific protective mechanisms that recognize the close relationships of care; but it does not call for other rights to be removed or diminished in the process. As was discussed earlier in this chapter, there was discussion during the negotiations of how the idea of harm and vulnerability should be conceptualized in the Convention and early versions of what became article 16 used specific phrases suggesting that disabled people were at an increased risk of harm. In many ways, there is surprisingly little opposition recorded on this position from the DPOs present, but it is notable that no such phrase exists in the final text. As Bartlett and Schulze have recently observed,102 article 16 cannot be read in isolation and it makes little sense to see the provision as opening a door into out-dated and disempowering protective mechanisms—as New Zealand called for during the negotiations, article 16 requires just as much a ‘paradigm shift’ as any other provision. The Committee’s response to this issue, particularly around the issue of domestic violence, has been to require states parties to integrate disability issues into their wider 100 See eg the collection of studies from around the globe, reported in the special issue of the Journal of Interpersonal Violence, Violence Against People with Disability (2014) 29, and the literature cited in (nn 2–5). 101 In the Preamble para (e) and (r), Arts 1, 3, 9(1), 10, 12(2), 13(1), 14(1) and (2), 15(2), 17, 18(1), 19(a), 21, 22(2), 23(1), 24(1) and (2), 27, 29, 30. 102 Bartlett and Schulze, ‘Urgently Awaiting Implementation’ (n 1) 2.
keeling
482
Freedom from Exploitation, Violence, and Abuse
strategies and to set up detection mechanisms,103 both for within family and institutional environments. As has been recently observed,104 establishing these mechanisms will require a careful balance on the part of member states to ensure that rights are fully protected. The absence of the phrase ‘equal basis with others’ does allow for different protective measures for disabled people, but these must be responsive to the specific harms that disabled people experience, and not contribute to further harm or the restriction of other rights in the Convention.
3.3 ‘All forms of exploitation, violence and abuse, including their gender-based aspects’ As was discussed earlier in this chapter, the definition of the scope of article 16 in the text of the article was debated—but the debate was dominated by the disagreement around the issue of involuntary detention and treatment. As has been noted by Bartlett and Schulze, this focus overshadowed the need to discuss more precisely the scope and types of harms encompassed under article 16, and in particular how it should be differentiated (if at all) from the right in article 15 CRPD to be free from torture, cruel, or inhuman, or degrading treatment or punishment.105 While much of the treatment which falls within the scope of article 16 is not torture, much of it could be caught by ‘cruel, inhuman or degrading treatment or punishment’, given the interpretation of that provision in other spheres of international human rights law. The Committee have not maintained a clear line between the two provisions. In considering the interaction of article 6 with the rest of the Convention in General Comment No 3,106 the Committee did not consider the relationship with article 15, but focused rather on article 16, to capture abuse and violence against disabled women. In General Comment No 1, however, it is clear that article 15 and 16 (along with article 17) are seen to overlap significantly when it comes to the issue of ‘forced treatment by psychiatric and other health and medical professionals’, viewing such conduct as being a violation of all three articles. Article 16 does, however, have the potential to be broader than article 15, covering financial abuse, along with conduct such as trafficking and economic exploitation, which have struggled to find accommodation within traditional prohibitions on torture. The wording that was retained in article 16(1) is open-ended, referring to ‘all forms of exploitation, violence and abuse’, although Bartlett and Schulze argue that the list of harms proposed by Mexico at the third session of the Ad Hoc Committee should, ‘at a minimum’, provide a starting point for determining the scope of the harms encompassed within article 16. These were ‘abandonment, violence, injury or mental or physical abuse, neglect or negligent treatment, maltreatment or exploitation, including sexual and economic exploitation and abuse’.107 Determining which of these types of harms fall within the separate categories of ‘exploitation’, ‘violence’, and ‘abuse’, and providing separate definitions for each, is not a simple task. The Committee 103 CPRD Committee, ‘Concluding Observations on the initial report of Ecuador’ UN Doc CRPD/E/ ECU/CO/1 (27 October 2014) para 3.1 104 Bartlett and Schulze, ‘Urgently Awaiting Implementation’ (n 1) 2; Eilionóir Flynn and Anna Arstein- Kerslake, ‘State Intervention in the Lives of People with Disabilities: The Case for a Disability-Neutral Framework’ (2017) 13 Int JLC 39; Judy Laing, ‘Preventing Violence, Exploitation and Abuse of Persons with Mental Disabilities: Exploring the Monitoring Implications of Article 16 of the United Nations Convention on the Rights of Persons with Disabilities’ (2017) 53 Int’l J L & Psychiatry 27. 105 Bartlett and Schulze, ‘Urgently Awaiting Implementation’ (n 1) 2, 5. 106 107 CRPD Committee, ‘General Comment on Article 6’ CRPD/C/GC/3 (2016). ibid.
keeling
Article 16
483
has not attempted to separate the categories methodically in concluding observations, and there is no evidence in the travaux of the intentions of the drafters. However, in its Concluding Observations, the Committee has considered a number of harms to fall within its remit, many of them falling within the scope of this list. Domestic violence, as will be discussed, has been a key focus, but there has also been particular reference to the abandonment of children and their subsequent economic exploitation as beggars by criminal gangs,108 alongside physical and sexual abuse in the context of institutions.109 The Committee has also given an indication of the breadth of article 16 in General Comment No 3 on Article 6 CRPD and the rights of disabled women and girls. In considering how that right interacted with article 16, the Committee provided a long, non-exhaustive list of the types of harm that women and girls may experience, which would fall within article 16.110 These included physical and sexual violence, but also other—perhaps more subtle, or controlling—behaviour, specifically linked to disability, such as restricting access to communication aids, or other assistive devices, such as ramps or wheelchairs, as well as the removal of, or refusal to provide care and other supports that enable and assist independent living. This demonstrates the specific harms related to disability and the relationships of care that require a specific response in developing policies which protect disabled people—rather than necessarily treating them on an ‘equal basis with others’ and assuming that mainstream policies will be sufficient. The reference to the ‘gender-based’ aspects of harm in the final part of paragraph 1 has been a significant focus of the Committee’s concluding observations, where it has noted three problems. Firstly, that there is a lack of clear legislation or policy on violence against women in general,111 or where there are measures, these do not include or make provision for disabled women.112 Secondly, that there is frequently insufficient funding allocated to the development of a coherent strategy, including protective measures such as shelters and legal advice.113 Finally, where these protective measures do exist, they are often not sufficiently accessible for disabled women.114 The Committee has therefore called for
108 CPRD Committee, ‘Concluding Observations on the initial report of El Salvador’ paras 35(e) and 36(e, UN Doc CRPD/C/SLV/CO/1; ‘Concluding Observations on the initial report of Kenya UN Doc CRPD/ C/KEN/CO/1 (30 September 2015) paras 31(b), 32(c); ‘Concluding Observations on the initial report of Paraguay’ UN Doc CRPD/C/PRY/CO/1 (15 May 2013) para 43. 109 See eg ‘Concluding Observations on the initial report of Germany’ UN Doc CRPD/C/DEU/CO/1 para 35; ‘Concluding Observations on the initial report of Moldova’ UN Doc CRPD/C/CMDA/CO/1 (18 May 2017) para 32. 110 United Nations Committee on the Rights of Persons with Disabilities, General Comment on Article 6 (2016) UN Doc CRPD/C/GC/3 para 31. 111 CPRD Committee, ‘Concluding Observations on the initial report of the Cook Islands’ UN Doc CRPD/C/COK/CO/1 (15 May 2015) para 30; ‘Concluding Observations on the initial report of Costa Rica’ UN Doc CRPD/C/CRI/CO/1 (12 May 2014) para 35; ‘Concluding Observations on the initial report of El Salvador’ CRPD/C/SLV/CO/1 (8 October 2013) para 35. 112 CPRD Committee, ‘Concluding Observations on the initial report of the Czech Republic’ CRPD/C/ CZE/CO/1 (15 May 2015) paras 34–35; Concluding Observations on the initial report of the Gabon’ CRPD/ C/GAB/CO/1 (2 October 2015) para 38; ‘Concluding Observations on the initial report of Tunisia’ UN Doc CRPD/C/TUN/CO/1 (13 May 2011) para 26. 113 CPRD Committee, ‘Concluding Observations on the initial report of Germany’ UN Doc CRPD/C/ DEU/CO/1 (13 May 2015) para 36. 114 CPRD Committee, ‘Concluding Observations on the initial report of Kenya’ UN Doc CRPD/C/KEN/ CO/1 (30 September 2015) para 31(c); ‘Concluding Observations on the initial report of Hungary’ UN Doc CRPD/C/CHUN/CO/1 (22 October 2012) para 32; ‘Concluding Observations on the initial report of Mongolia’ UN Doc CRPD/C/MNG/CO/1 (13 May 2015) para 27.
keeling
484
Freedom from Exploitation, Violence, and Abuse
legislation and policy where it is absent, such that recognizes the needs of disabled women, and applied in such a manner that protective measures are put in place and that they are made accessible.115 The strategies which the Committee has called for demonstrate the holistic nature of article 16, in that effective protection requires consideration of early detection and prevention, alongside support for recovery and legal remedies that include compensation and reparations, as well as accessible services should harm occur, such as shelters and counselling. This spans across the demands of every provision of article 16.
4. Paragraph 2 Paragraph 2 begins to expand the obligations on states parties and, in particular, makes it clear that the obligations to protect disabled people from exploitation, violence, and abuse should work to prevent such treatment. This obligation is framed as additional to the obligation to protect in paragraph 1, but separating the two is difficult, particularly given the expansive focus of the measures required in paragraph 1. The similar wording of a protective obligation in article 19 CRC is also followed by a second paragraph that expands the obligation to provide adequate care and support, ‘as well as for other forms of prevention’. In General Comment No 13 on article 19 CRC, the CRC Committee notes that effective child protection should begin with ‘proactive prevention’;116 article 16 CRPD should be seen in the same way and paragraphs 1 and 2 should be seen as related. The importance of paragraph 2 is the way in which the prevention is outlined; rather than harm being prevented by disabled people being segregated from society, the obligation on states is to provide support and assistance to enable disabled people to remain safely within communities.
4.1 Preventative Measures, Ensuring ‘appropriate gender-and age-sensitive assistance and support’ As with article 16(1), 16(2) requires states to take ‘all appropriate measures’, this time in relation to preventing, rather than protecting, from all forms of exploitation, violence and abuse. While these two provisions are situated in separate paragraphs, it is notable in the concluding observations that it is difficult to ascribe the Committee’s recommendations to one paragraph or the other.117 Thus, while they are conceived as two separate obligations in the text of the Convention, the ‘preventative’ aspect of article 16(2) is often key to the Committee’s understanding of effective protection mechanisms.118 As discussed above with regards to paragraph one, the precise legislative, administrative, social, educational, and other measures required by article 16(1) are left open—and
115 See eg CRPD Committee, ‘Concluding observations on the initial report of the United Arab Emirates’ UN Doc CRPD/C/ARE/CO/1 (3 October 2016) para 32. 116 CRC Ctee, General Comment No 13 CRC/C/GC/13 para 46. 117 eg the concluding observation for Kenya makes it clear that a scheme of protection ‘must include prevention’—CRPD Committee, ‘Concluding Observations on the initial report of Kenya’ UN Doc CRPD/C/KEN/ CO/1 (30 September 2015) para 32. The concluding observation for Hungary does not mention the word ‘prevention’, requiring only that ‘effective measures to ensure protection’ are undertaken. However, it is clear that preventative measures are required, as the committee recommends the establishment of early detection protocols (CRPD Committee, ‘Concluding Observations on the initial periodic report of Hungary’ para 32). 118 ibid.
keeling
Article 16
485
particularly in respect of the social and educational aspects their content is undefined, with little guidance from the travaux préparatoires. In contrast, paragraph 2 is more detailed, and forms of ‘appropriate measures’ are suggested. The ones specifically named are those that were discussed in the negotiations on the Convention—specifically forms of assistance and support for both disabled people and their families and caregivers, which may take the form of ‘the provision of information and education on how to avoid, recognize and report instances of exploitation, violence and abuse’. This formulation of prevention is important, as it suggests a more modern approach to protecting disabled people from harm that works to empower them to safeguard themselves rather than remove them from a society that may present dangers to them. Indeed, the Committee has been critical of states where institutionalization has been the main remedy for abuse119 and has noted that institutionalization often brings with it a greater incidence of harm.120 The focus on support and assistance is also in line with the wider relational framework seen elsewhere in the Convention, for example in article 12, which recognizes that disabled people may need support in exercising their rights, but that these needs do not diminish their ability to hold or claim rights as legal subjects.
4.2 ‘Including through the provision of information and education on how to avoid, recognize and report instances’ The Committee has made very little reference to the obligation for education for disabled people in article 16 in its concluding observations, and it was also a notable omission from General Comment No 4, which focused more on the use of punishment, and its disproportionate affect on disabled people—and particularly corporal punishment.121 The concluding observations of the Committee which do refer to education measures, as discussed below, recognize that educational measures around exploitation, violence, and abuse need to be made accessible to and tailored for disabled people, and there is a clear link to the requirements on accessible education in article 24, so it is unfortunate that the Committee did not make this link in the General Comment on article 24. The main recommendations the Committee has made around the requirement for information and education have focused around the provision of accessible services, either in creating services specifically for disabled people, particularly disabled women, or making existing services accessible. In particular, they have called for accessible shelters and helplines.122 A notable exception is in relation to Ecuador, where it was noted that the high rate of teenage pregnancy and childbirth amongst disabled women was indicative of high levels of sexual abuse, particularly amongst women with intellectual disabilities. In its recommendations, the Committee urged that Ecuador ‘launch a training programme on the sexual and reproductive rights of persons with disabilities, targeted specifically at women with intellectual disabilities, their families and the professionals who provide CPRD Committee, ‘Concluding Observations on the initial report of El Salvador’ para 35(c). CPRD Committee, ‘Concluding Observations on the initial report of Ecuador’ UN Doc CRPD/E/ ECU/CO/1 (27 October 2014) para 30(c). This is also something observed in the academic literature, see (nn 2–5). 121 CRPD Committee, General Comment on article 24 (2017) CRPD/C/GC/4. 122 CRPD Committee, ‘Concluding observations on the initial report of Bolivia’ para 41; ‘Concluding observations on the initial report of Cyprus’ para 40; ‘Concluding observations on the initial report of Ethiopia’ 36(b); ‘Concluding observations on the initial report of Gabon’ para 39; ‘Concluding observation on the initial report of Italy’ para 44; ‘Concluding observations on the initial report of Mauritius’ para 28(a). 119 120
keeling
486
Freedom from Exploitation, Violence, and Abuse
services in various state institutions’.123 The phrasing here emphasizes the need to make this assistance ‘gender-and age-sensitive’—in this particular instance making the education specifically tailored for and targeted at women with intellectual disabilities. This recommendation is also an example of the difficulty in separating the obligations in paragraphs 1 and 2. Such education and training programmes would hopefully prevent abuse occurring in the future—but this is also a form of protection. In addition to the education for disabled people and families, there is a recommendation of training for professionals in order that they identify and detect instances of exploitation, violence and abuse and the same recommendation has been made to other states.124 This form of prevention is not explicitly referenced in article 16(2), which refers only to ‘persons with disabilities and their families and caregivers’, but equally, it is not explicitly excluded, as the ‘assistance and support’ referred to in article 16(2) is only indicative of the types of appropriate measures that should be made available. Such obligations would fit just as easily within the more general requirements for educational measures in article 16(1), but the pertinent discussions during the Ad Hoc sessions demonstrate that education and training for all three groups were being considered and discussed together. This clearly highlights the overlap between an obligation to protect and to prevent— but also suggests the way in which ‘protection’ is more broadly to be understood in article 16. Rather than removing disabled people from the dangers present in society, through the use of institutionalisation, the focus should be on developing a supportive environment in which they can take control themselves. As discussed in the travaux section, there was discussion around whether the rights in article 16 should apply to care givers and there was support for the need to recognize that ‘supportive environments’, particularly those provided by care workers, could provide a safe place for disabled people to disclose abuse.125 Training for families, carers, and other professionals to provide this space and to recognize the signs of exploitation, violence, and abuse, was considered vitally important to a meaningful right in article 16. There was discussion as to whether ‘protection’ and ‘prevention’ should be maintained as separate provisions, or whether it was repetitive. Ultimately, separate provisions were left, in order to emphasize that the obligations in article 16 went beyond the ‘old paradigm’ of protection.
4.3 Ensure that Protection Services Are Age-, Gender-, and Disability-Sensitive Paragraph 1 requires that states take measures to protect disabled people from exploitation, violence and abuse, and in particular the ‘gender-based aspects’. In paragraph 2 there is an obligation to ensure that the protective services that are provided to ensure the prevention of harm are ‘age-, gender-and disability-sensitive’. This is a wider reference, referring not to any particular type of harm, but rather to the accessibility of the services themselves. As has been noted previously, article 16 does not contain the phrase ‘equal basis with others’, but this does not necessarily negate the concept of reasonable CPRD Committee, ‘Concluding Observations on the initial report of Ecuador’ para 31. CRPD Committee, ‘Concluding Observations on the initial report of Gabon’, para 39; ‘Concluding Observations on the initial report of Sweden’ para 42; ‘Concluding Observations on the initial report of Mauritius’ para 28(b). 125 Summary of Daily Discussions at the Seventh Session (19 January, 2006), available at: . 123 124
keeling
Article 16
487
accommodation and the adjustment of existing services to accommodate the specific needs of disabled people. A particular focus for the Committee on this issue has been the accessibility of information about protection from abuse, including shelters, alongside the physical accessibility of the shelters themselves and the capacity of those shelters to accommodate disabled people, particularly women and children.126 Concerns have also been expressed about the accessibility to mechanisms for legal redress in Mongolia.127 As with other aspects of article 16, it is not easy to separate the ‘protective services’ in the final sentence of paragraph 2, which must be ‘age-, gender-and disability-sensitive’, from the ‘appropriate forms of . . . assistance and support’ which must only be gender- and age-sensitive. Shelters and legal advice can be seen as ‘protective mechanisms’, but can also be places of assistance and support that enable reporting of exploitation, violence, and abuse, as well as places of education on how to avoid and recognize incidences. Some additional guidance on this matter can be found in the Committee’s interpretation of article 16 in its General Comment No 2 on article 9.128 In considering the interaction between article 9 and article 16, the Committee stated that ‘safe houses, support services and procedures must all be accessible in order to provide effective and meaningful protection from violence, abuse and exploitation to persons with disabilities, especially women and children’.129
5. Paragraph 3 Paragraph 3 concerns the monitoring of facilities and programmes and during the negotiation of the Convention such an obligation was considered extremely important. However, the interpretation of this obligation requires examination, given the scope of the obligation in article 16(1) to encompass protection both ‘within and outside the home’.
5.1 ‘All facilities and programmes’ Paragraph 3 also concerns the issue of prevention, and specifically focuses on the role of monitoring in this process. The scope of the duty in this paragraph is challenging, however, as the text of the Convention refers to ‘all facilities and programmes designed to serve persons with disabilities’. There is an obligation to monitor institutions within the remit of the Optional Protocol of the Convention Against Torture (OPCAT), but it is clear that the obligation in article 16 CRPD must stretch further than this, as the scope of the protective obligations set out in article 16(1) clearly extend beyond the institution in the wider public domain and into private residences. This raises several difficult questions for the implementation of article 16. Paragraph 3 requires that ‘all facilities and programmes designed to serve persons with disabilities are effectively monitored by independent authorities’. However, the meaning of this phrase is difficult to define when set alongside the inclusion paradigm pursued by the Convention.130 A move to greater independent community living means that disabled people will no longer use ‘facilities and programmes’ designed for them alone, but it seems unlikely that the intention of the Convention is to restrict protection and prevention of harm CRPD Committee, ‘Concluding Observations on the initial report of Gabon’ para 38. CRPD Committee, ‘Concluding Observations on the initial report of Mongolia’ para 27(a). 128 129 CRPD General Comment on Article 9. ibid para 37. 130 Bartlett and Schulze, ‘Urgently Awaiting Implementation’ (n 1) 2. 126 127
keeling
488
Freedom from Exploitation, Violence, and Abuse
to disability-specific facilities and programmes. Secondly, in a more integrated community where disabled people are living in private residences, should those private residences be considered ‘facilities’ or ‘programmes’ susceptible to monitoring? How should carers be regulated? This issue was briefly discussed at the fifth session of the Ad Hoc Committee.131 The initial proposal had included a phrase limiting monitoring where disabled people ‘are placed together separate from others, live and access services’.132 This sentence was the focus of the discussion and the extent to which monitoring should extend beyond institutions. New Zealand observed in the discussions that the Working Group, in proposing the provision initially, had focused on situations where disabled people were most likely to experience violence and abuse, ie in institutions, while Canada called for a broader approach to monitoring.133 New Zealand was concerned that this broadened the scope of article 12(4) (as it then was) too significantly, suggesting that disabled people should be monitored accessing general services such as banks or other financial services, and that this cannot be the intention of the article.134 Thus far, the Committee has not given clear guidance on how this should be interpreted. Where the issue of monitoring has been addressed in concluding observations, the focus has been primarily on the fact that many states do not even have basic monitoring bodies, independent from government, at all, even with regards to institutions.135 The comments in concluding observations with regard to paragraph 3 have, therefore, primarily urged states parties to set up independent monitoring bodies without further elaboration. For example, with regard to Mongolia the Committee recommended that it ‘appoint an independent authority to monitor and protect persons with disabilities from exploitation, violence and abuse in accordance with article 16(3) of the Convention’.136 In three specific instances, the Committee has provided a greater indication of more specific action. With regard to Germany, the suggestion that an independent body(ies) be set up was accompanied with a requirement to ensure that complaints about incidences in institutions were handled by an independent body,137 while in respect of Mexico a requirement that children’s shelters, as well as other residences for children, were monitored by an independent body.138 These two recommendations make it clear that the monitoring required goes beyond traditional institutions, and that this extends to private residences, as was emphasized in the Committee’s recommendations to Italy. There, the Committee recommended ‘that the state party enact legislation, including monitoring mechanisms, to detect, prevent and combat violence within and outside the home of persons with disabilities’,139 but little guidance was given as to how this obligation should be balanced against other requirements in the CRPD, particularly those in article 12.
131 United Nations Ad Hoc Committee on the Rights of Persons with Disabilities, Daily summary of discussion at the fifth session (31 January 2005), available at: . 132 United Nations Ad Hoc Committee on the Rights of Persons with Disabilities, Facilitators Proposed Modifications on Draft Articles (31 January 2005), available at: . 133 134 ibid. ibid. 135 See eg CRPD Committee, ‘Concluding Observations on the initial report of Germany’ para 36; ‘Concluding Observations on the initial report of Mongolia’ para 27. 136 ‘Concluding observations on the initial report of Mongolia’ para 27. 137 CRPD Committee, ‘Concluding Observations on the initial report of Germany’ para 36. 138 CRPD Committee, ‘Concluding Observations on the initial report of Mexico’ para 36(c). 139 CRPD Committee, ‘Concluding Observation on the initial report of Italy’ para 44.
keeling
Article 16
489
While article 16 CRPD does not contain a provision whereby the rights within be afforded ‘on an equal basis with others’, it seems clear that the disproportionate monitoring of disabled people would be in danger of drifting back into an overly controlling protective framework which was restrictive of disabled people’s rights overall. As Laing has noted,140 there appears to be an inherent tension in the understanding of article 16’s protective requirements, and in particular around monitoring—but the answer cannot be to over-protect disabled people. Other interpretations of state intervention with regard to article 16 have focused on its interaction with legal capacity,141 but the Committee itself did not consider this aspect when it examined the interaction between articles 12 and 16 in its General Comment No 1. The interpretation of the provisions on legal capacity in article 12 have proven to be a contentious issue, but the interpretation of the Committee—as has been set out in detail elsewhere in this volume—is that an individual should be supported in their exercise of their legal capacity, and that substitute decision-making should be prohibited. In their General Comment No 1, the Committee considered the interaction with article 16 the alongside articles 15 (freedom from torture) and 17 (the right to personal integrity). Reflecting the dominating debate during the negotiation, the Committee’s concern was around the issue of involuntary medical treatment.142 However, this narrow focus omits consideration of a wider area of conflict between the two rights. Article 12, and particularly the Committee’s interpretation of it, places significant emphasis on the ‘will and preference’ of the individual. However, with regards to the relationship between article 12 and 16, there remains a question as to what a state’s action should be where an individual appears to choose to remain in an exploitative, violent, or abusive relationship, or to choose an exploitative or abusive person to support their legal capacity? The obligations around monitoring in 16(3) raise questions around to what extent the supportive relationships around the exercise of legal capacity should be regulated by the state. Arstein-Kerslake, in considering this question, states that central to the right to legal capacity is the state’s obligation to uphold choice, and this requires support to ensure that the individual is actually making a choice.143 She notes that where there is concern around an exploitative relationship, the disabled person must be made aware of other options, including leaving the exploitative relationship and the existence of alternative living arrangements. However, should the person ultimately decide to remain, the state must withdraw from further interference and exist ‘without undue intrusion’.144 Writing with Flynn, she makes a similar point during an examination of adult protection processes.145 Together, they argue that the shortcoming of many such schemes is that they work to restrict the person experiencing the harm, and that, while state intervention into people’s lives can be countenanced, it must be done on a disability-neutral basis if help or support is refused. Keeling has made a slightly different point, arguing from the basis of empirical data that effective protection mechanisms under article 16 must look to article 12 and the role of legal capacity.146 She argues that safeguarding mechanisms which disempower Laing, ‘Preventing Violence, Exploitation and Abuse of Persons with Mental Disabilities’ (n 104) 27, 32. Flynn and Arstein-Kerslake, ‘State Intervention in the Lives of People with Disabilities (n 104) 39; Keeling, ‘Organising Objects’ (n 9) 77. 142 CRPD Committee, ‘General Comment on Article 12’ UN Doc CRPD/C/GC/1 para 42. 143 144 Arstein-Kerslake, ‘An Empowering Dependency’ (n 57) 77, 87. ibid 89. 145 Flynn and Arstein-Kerslake, ‘State Intervention in the Lives of People with Disabilities (n 104) 39. 146 Keeling, ‘Organising Objects’ (n 9) 77. 140 141
keeling
490
Freedom from Exploitation, Violence, and Abuse
the individual do not work to prevent future harm; in order to be effective, protective mechanisms must work towards enhancing and supporting and individual’s legal capacity. General Comment No 1 has not dealt with this point in detail, and nor have adult protection frameworks been addressed from this perspective in the Concluding Observations available thus far. More detail in future concluding observations would be welcome, as would the development of a General Comment.
5.2 ‘Effectively monitored by independent authorities’ It is insufficient that monitoring mechanisms exist only on paper, but do not effectively prevent harm from occurring. Article 16(3) requires that monitoring must be effective at protecting disabled people and the Committee has been critical of states which, while possessing monitoring mechanisms in place, continue to have high rates of exploitation, violence, and abuse in institutions.147 Additionally, monitoring must be undertaken by a body that retains independence from the state, as well as the institution at hand. This latter point has been particularly criticized by the Committee in terms of complaint mechanisms situated in institutions, where there has been no independent mechanism.148
6. Paragraph 4 Paragraph 4 provides an important aspect to article 16 that shifts state obligations far beyond concepts of protection involving the segregation of disabled people from society. On the contrary, article 16(4) sets out detailed requirements for the response of states to the experience of exploitation, violence, and abuse. The focus of this obligation is around the recovery of victims, but also their reintegration into society.
6.1 Measures to Promote the Physical, Cognitive, and Psychological Recovery, Rehabilitation, and Social Integration Where article 16 takes a significant departure from the right to be free from torture, cruel, or inhuman, or degrading treatment or punishment in article 15 is the obligation in paragraph 4 to promote the recovery, rehabilitation, and social reintegration of disabled people who have experienced exploitation, violence, and abuse. The obligation for rehabilitation is something found in other Conventions, including article 14 of the CAT, article 39 of the CRC, and article 6 of the Convention Against Transnational Organized Crime (CATOC), on the rehabilitation of victims of trafficking.149 The Committee Against Torture explored what rehabilitation from torture required in General Comment No 3, noting that the aim should be to ‘restore, as far as possible, their independence, physical, mental, social and vocational ability; and full inclusion and participation in society’,150 and that it should be a ‘holistic and include medical and psychological care as well as legal and social services’.151 The idea of rehabilitation is also elaborated on in the
147 See eg CRPD Committee, ‘Concluding observations on the initial report of Bosnia and Herzegovina’ UN Doc CRPD/C/BIH/CO/1 (2 May 2017) para 31. 148 CRPD Committee, ‘Concluding Observations on the initial report of Germany’ para 36. 149 Art 6(3) CATOC. 150 CAT Ctee, ‘General Comment on Article 14’ UN Doc CAT/C/GC/3 (13 December 2012) para 11. 151 ibid.
keeling
Article 16
491
provisions for victims of trafficking in the CATOC, where article 6(3) outlines measure for the ‘physical, psychological and social recovery of victims’ as including: (a) Appropriate housing; (b) Counselling and information, in particular as regards their legal rights, in a language that the victims of trafficking in persons can understand; (c) Medical, psychological and material assistance; and (d) Employment, educational and training opportunities. The provision in article 16 was introduced at the Third Session of the Ad Hoc Committee, as part of the Working Group’s draft text of the Convention152 and was strongly endorsed by New Zealand, Serbia and Montenegro, the Philippines (who suggested the addition of ‘rehabilitation’), Trinidad and Tobago.153 It is important that the positive obligations under article 16 extend to these aspects, as they themselves have the potential to perpetuate a cycle of harm. Domestic violence, for example, can generate feelings of low self-worth, which may result in the individual entering into further abusive and exploitative relationships. This approach to protection in article 16 further emphasizes that the obligation on states is within the ‘paradigm shift’; disabled people should be included within wider society rather than become marginalized. In considering the measures which fall within this obligation, the Committee has thus far had a specific focus on two groups of people: children who have been exploited by criminal gangs to beg,154 and disabled women and children that have been trafficked as sex workers.155 In responding to these specific harms, the Committee has not been prescriptive of what shape rehabilitative measures should take, but has emphasized that the focus should be on social inclusiveness.156 Thus, the support provided should focus on both healing the psychological and physical trauma that may have been experienced, but also working to reintegrate people into society, away from exploitation. In the context of trafficking, with regard to Paraguay, the Committee recommended the development of reception centres and alternative housing, which provide safe accommodation so that women cannot be re-trafficked, alongside providing a place where legal assistance and other support can be easily obtained.157 There has been less prescription with regard to children that have been raised into a begging culture, but providing secure accommodation and access to food, alongside safety from their exploiters, and education as a means to exiting poverty would seem to be an obvious parallel.
152 Ad Hoc Committee, ‘Working Group to draft a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’, Report to the Ad Hoc Committee, Annex I, UN Doc A/AC265/2004/WG/1 (16 January 2004). 153 Ad Hoc Committee, ‘Daily summary of discussions related to article 12, Freedom from Violence and Abuse, (26–27 May 2004)’, available at: . 154 CRPD Committee, ‘Concluding observations on the initial report of the Dominican Republic’ paras 32, 33(a); ‘Concluding observations on the initial report of El Salvador’ para 35(e); ‘Concluding observations on the initial report of Honduras’ para 41; ‘Concluding Observations on the initial report of Kenya’ para 31(b), 32(c), ‘Concluding observations on the initial report of Paraguay’ para 43. 155 CRPD Committee, ‘Concluding observations on the initial report of Paraguay’ para 41. 156 CRPD Committee, ‘Concluding observations on the initial report of the Dominican Republic’ para 33(a). 157 CRPD Committee, ‘Concluding observations on the initial report of Paraguay’ para 42.
keeling
492
Freedom from Exploitation, Violence, and Abuse
7. Paragraph 5 Paragraph 5 sets out an obligation to ensure the identification, investigation, and prosecution of instances of exploitation, violence, and abuse. This paragraph reflects the fact that many instances of abuse and exploitation are not resolved for disabled people, with the action taken often resulting in the disabled person finding greater intervention in, and restrictions placed on, her life instead of the perpetrator being prosecuted.158 The demands in article 16 to ensure that disabled people get the adequate support needed to understand when they have experienced exploitation, violence, and abuse and that their reports are taken seriously should be read alongside obligations in article 13 to provide adjustments in the justice system for disabled people.
7.1 Effective Legislation and Policies . . . to Ensure Instances are Identified, Investigated and, where Appropriate, Prosecuted Paragraph 5 requires that both legislation and policies are put in place to ensure the identification and investigation of instances of exploitation, violence, and abuse. As with monitoring, these measures must also be effective—they cannot pay mere lip service. There are clear overlaps between this obligation and the obligation in article 16(3) to provide effective monitoring, but the obligation in paragraph 5 goes further. This obligation is not restricted to formal monitoring mechanisms, but extends to staff and carers who work with disabled people on a day-to-day basis; in order to ensure effectiveness, there must be adequate training for professionals to ensure that they are able to identify harm, as well as investigate suspicions or reports. The lack of training for professionals has been mentioned in a number of concluding observations. For example in relation to Gabon, recommendations were made to ensure that training was provided for ‘police offers, justice workers, health professional and other interlocutors so as to ensure protection from and prevention of exploitation and abuse of, and violence against persons with disabilities, including on effective reporting channels[ . . . ]’.159 There has also been significant criticism of the lack of data or record of cases kept by states, as without knowing the scale of the problem, an adequate policy response cannot be designed.160 The issue of prosecution has a discretionary element—‘where appropriate’—but it is clear that the issue of punishing exploitation, violence and abuse of disabled people is not taken sufficiently seriously. Such incidences of violence would generally be prosecuted if perpetrated again non-disabled people, and therefore in the interest of equal access to justice, the same standard should apply for disabled people. Gabon has been criticized for failing to take women’s complaints seriously and for showing a marked reluctance to prosecute such offences,161 and Ethiopia has also recently been criticized for its failure to make the criminal justice system accessible, and for failing to treat the evidence of disabled
Lawson, ‘Disabled People and Access to Justice’ (n 8) 88. CRPD Committee, ‘Concluding Observations on the initial report of Gabon’ para 39; see also ‘Concluding Observation on the initial report of Italy’ para 44. 160 CPRD Committee, ‘Concluding Observations on the initial report of El Salvador’ para 35(a); ‘Concluding Observations on the initial report of Mexico’ para 34; ‘Concluding Observations on the initial report of Paraguay’ para 39; ‘Concluding Observations on the initial report of Qatar’ para 31(c); ‘Concluding Observations on the initial report of Turkmenistan’ para 30(b). 161 CRPD Committee, ‘Concluding Observations on the initial report of Gabon’ para 38. 158 159
keeling
Article 16
493
people as credible.162 Paraguay has been criticized for failing to properly investigate and prosecute criminal gangs who economically exploit disabled children,163 and the Republic of Korea,164 Moldova,165 and Honduras166 for a general failure to punish perpetrators and to provide reparations. The phrase ‘reparations’ is not explicitly included in the text of article 16, and was not discussed in the negotiations. In the context of victims of torture, inhuman cruel, or degrading treatment or punishment, article 14 CAT requires the compensation of the victim, which can include rehabilitation measures alongside monetary compensation. Equally, the CATOC requires measures for compensation in place in a number of articles.167 If article 16 is understood to be linked closely to general rights prohibiting torture, then equally rights to compensation or reparation could also be seen as a natural addition to the interpretation of the right. Alternatively, perhaps it could be said that it simply follows what seems to be a general requirement for compensation or reparations in international human rights law—and indeed in many legal systems provisions around civil wrongs.
7.2 Including Women-and Children-Focused Legislation and Policies The obligation in paragraph 5 requires that there are specific legislative and policy measures put in place for children and women. This reflects again the focus on these two groups as experiencing higher levels of harm, particularly of a sexual and economic nature. This obligation, therefore, requires the adoption of legislation and policies that specifically respond to the issues that these groups face—particularly domestic violence and economic exploitation, as is the case with child begging. Developing these policies requires knowledge of the extent and types of harms that these two groups face, and therefore the need to collect data is important here is also developing effective preventative frameworks.
CRPD Committee, ‘Concluding Observations on the initial report of Ethiopia’ para 35. CRPD Committee, ‘Concluding Observations on the initial report of Paraguay’ paras 43–44. 164 CRPD Committee, ‘Concluding Observations on the initial report of the Republic of Korea’ para 31. 165 CRPD Committee, ‘Concluding Observations on the initial report of Moldova’ para 33(b). 166 CRPD Committee, ‘Concluding Observations on the initial report of Honduras’ para 41. 167 Arts 6(6), 14(2), and 25(2). 162 163
keeling
Article 17 Protecting the Integrity of the Person Every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others.
1. Introduction 2. Travaux Préparatoires 3. The Right to Personal Integrity in the European Convention on Human Rights 4. The Right to Personal Integrity in the EU Charter of Fundamental Rights 5. The Right to Personal Integrity 5.1 Seclusion and Restrain 5.2 Forced Sterilization
494 495 497 498 500 504 505
1. Introduction The notion of personal integrity has attracted noteworthy attention in international human rights law debates in recent times.1 It has been rightly considered as strategic for the realization of fundamental freedoms and rights of marginalized segments of the society, including disabled persons.2 Or to say alternatively, it has been considered among the fundamental human rights, and human rights movements throughout history have tried to articulate how this right must apply to them to guarantee that they may assert and implement other fundamental rights and freedoms.3 Although at first sight the right to personal integrity (or physical integrity) could be conceived as only referring to ‘the interest of the physical person’ that encompasses ‘. . . the so-called natural rights of physical integrity and personal liberty’,4 Poe and Tate defined the right of personal integrity as the right to be free from political imprisonment, torture, extrajudicial killing, and forced disappearance.5 Such a wide and operational notion guarantees that the conceptualization of personal integrity is framed to approach a rather wide
1 See Ingrid Nifosi-Sutton, The Protection of Vulnerable Groups under International Human Rights Law (Abingdon: Routledge 2017) 120 ff; Daniel W Hill, The Right to Personal Integrity in International and Domestic Law (PhD thesis 2012), available at: . 2 See eg Jeremy Cooper, Stuart Vernon, Disability and the Law (London: Jessica Kingsley Publishers 1996) 2 ff. 3 See eg Daniel W Hill, ‘The Concept of Personal Integrity Rights In Empirical Research’, available at: . 4 See Roscoe Pound, ‘Interests of Personality’ (1915) 28 Harvard Law Review 343–65. 5 See Steven Poe, Neal Tate, ‘Repression of Personal Integrity Rights in the 1980’s: A Global Analysis’ (1994) 88 American Political Science Review 853–87.
seatzu
Article 17
495
range of scenarios in which persons with disabilities, and others, attempt to enforce their entitlements, make claims about their freedoms and rights or claim for justice. Much earlier than the entry into force of the CRPD, there was no specific enunciation of a general right to personal integrity in the core text of any UN human rights conventions.6 Nevertheless, the right to be free from torture or cruel, inhuman, or degrading treatment or punishment and the right to privacy could be considered as the most natural precursors to the wider right to personal and mental integrity. These rights were first indicated in the UN Declaration of Human Rights of 1948 and subsequently reiterated in key human rights conventions and agreements such as the International Covenant on Civil and Political Rights (ICCPR). In this work, I will consider how an ad hoc right to personal integrity has arisen from the negotiations of the CRPD and consider the scope of application of the right based on the practice of the CRPD Committee and scholarly works in the field. I will examine the inter-relationship between article 17 and other CRPD provisions to understand how the interpretation and application of this right might change in the future based on the case-law of the CRPD Committee and on academic works in this field.
2. Travaux Préparatoires In the first draft of the CRPD produced by the Working Group of the Ad Hoc Committee in January 2004, no article on personal integrity was inserted.7 However, things partially changed at the Fifth Session in 2005 as a result of the inclusion of the then draft Article 12.8 Article 12 was entitled ‘Freedom from Violence and Abuse’ and, amongst other issues, called for actions and measures ‘to prohibit and protect persons with disabilities from forced evictions or forced institutionalization aimed at correcting, improving, or alleviating any actual or perceived impairment, and abduction’. As the Ad Hoc Committee’s Report from the Fifth Session noted, this proposed draft article became the object of a subsequent proposal to split it in two distinct articles, dealing respectively with freedom of exploitation, violence, and abuse and the protection of personal integrity.9 This proposal had encountered general appreciation due to the practical concern that was hard to deal with different, though related, issues in the same article.10 The main consequence of this was that the following debate concentrated on the content of the new draft article on personal integrity.11 More precisely, the debate boiled down to whether involuntary
6 See eg Mary Keys, ‘Article 17’, in Valentina Della Fina, Rachele Chera, Giuseppe Palmisano (eds), The United Nations Convention on the Rights of Persons with Disabilities (Springer 2016) 327; Ida Elisabeth Koch, ‘From Invisibility to Indivisibility: The International Convention on the Rights of Persons with Disabilities’, in Oddný Mjöll Arnardóttir, Gerard Quinn (eds), The UN Convention on the Rights of Persons With Disabilities: European and Scandinavian Perspectives (Martinus Nijhoff 2009) 69. 7 United Nations, Ad Hoc Committee, Report of the Working Group to the Ad Hoc Committee, Annex I: Draft Articles for a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities UN Doc A/AC265/2004/WG/1 (5–16 January 2004). 8 Fifth Session of the Ad Hoc Committee, ‘Report of the Ad Hoc Committee on Its Fifth Session’ (23 February 2005) Annex II para 12, available at: (accessed 13 September 2017). 9 ibid paras 42–43. 10 United Nations, Ad Hoc Committee, Daily summary of discussion at the fifth session, Vol 6, No 5 (31 January 2005), available at: . 11 United Nations, Ad Hoc Committee, Daily summary of discussion at the fifth session, Vol 6, No 5 (28 January 2005), available at: .
seatzu
496
Protecting the Integrity of the Person
medical treatments should be considered under the relevant article dealing with torture or cruel, inhuman, or degrading treatment or punishment. In this respect, two different opinions emerged from the discussions: one view was that involuntary medical treatment was tantamount to torture and thus should be considered under the relevant article dealing with torture.12 The second view referred to involuntary interventions as meaning abortion, sterilization, non-consensual medical experimentation, organ harvesting, therefore tying the notion of personal integrity to medical interventions.13 Owing to the fact that there was some support for a separate paragraph focusing on medical emergencies or risk to public health to ensure that the rules must be the same for all persons, the majority of delegates welcomed and supported the latter’s proposal of a further paragraph that obliges states parties to keep to a minimum the number of exceptions to the informed consent principle and to supply safeguards for involuntary treatment. This led to the adoption by the seventh session of draft article 17 that was worded as follows: 1. States Parties shall protect the integrity of the person or persons with disabilities on an equal basis with others. 2. States Parties shall protect persons with disabilities from forced interventions or forced institutionalization aimed at correcting, improving or alleviating any actual or perceived impairment. 3. In cases of medical emergency or issues of risk to public health involving involuntary interventions, persons with disabilities shall be treated on an equal basis with others. [4. States Parties shall ensure that involuntary treatment of persons with disabilities is: (a) Minimized through the active promotion of alternatives; (b) Undertaken only in exceptional circumstances, in accordance with procedures established by law and with the application of appropriate legal safeguards; (c) Undertaken in the least restrictive setting possible, and that the best interests of the person concerned are fully taken into account; (d) Appropriate for the person and provided without financial cost to the individual receiving the treatment or to his or her family.14
As Bernadette McSherry rightly observed, it is evident from this draft that the right to personal integrity was meant ‘to be closely tied to protection from certain medical interventions (forced institutionalization and involuntary treatment)’.15 As easy to observe is the fact that paragraph (4) was only placed in brackets. And this is because of the strong disagreement that emerged during the Fifth Session as to whether or not it must be inserted.16 The strongest opposition against the insertion of article 17 (4) was from the International Disability Caucus (IDC), the umbrella group for disability organizations, that advocated its deletion since it was perceived as a lower standard for disabled persons with regard to informed consent.17 Similarly, and equally significantly, the IDC also supported the deletion ibid see eg the position of Costa Rica and Trinidad and Tobago. ibid see eg the position of the position of the EU, Liechtenstein, and New Zealand. 14 United Nations, General Assembly, Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its seventh session UN Doc A/AC265/2006/2 (13 February 2006). 15 See Bernadette McSherry, ‘Protecting the Integrity of the Person: Developing Limitations on Involuntary Treatment’ in Bernadette McSherry (ed), International Trends in Mental Health Laws (The Federation Press 2008) 121–22. 16 United Nations, Ad Hoc Committee, Daily summary of discussion at the fifth session Vol 6 No 5 (28 January 2005), available at: . 17 United Nations, Ad Hoc Committee, Daily summary of discussion at the fifth session Vol 6 No 6 (31 January 2005), available at: . 12 13
seatzu
Article 17
497
of article 17(3). In this case the main argument revolved around that article 17(3) was not about the rights and freedoms of disable persons, but rather was concerned about authorizing involuntary treatments in the context of medical emergencies.18 These and other arguments were used by the drafters of the Interim Report of the Ad Hoc Committee on the Eighth Session that omitted any reference to forced institutionalization and involuntary treatment and reduced article 17 as it currently stands, and thus to the statement that ‘every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others’.19 This raises the question of the exact scope of the right to personal integrity under article 17, that will be considered in the following paragraphs.
3. The Right to Personal Integrity in the European Convention on Human Rights The right to respect for private life in article 8 of the ECHR has at its core the recognition of physical and psychological integrity of the individual.20 The preservation of physical and psychological integrity is a precondition to the full and effective enjoyment of the right to respect for private life.21 Included is the right to identity, personal development, dignity, and the right to develop relationships with others. These are some of the fundamental components of an ordinary life as opposed to one marked by loss of psychological integrity and physical integrity. Measures which affect one’s physical integrity or mental health must be proportionate to comply with the ECHR, and administering medicine or performing medical treatment against the will of the patient, does not meet this requirement.22 The CRPD Committee has recommended that medical treatments without free and informed consent must be forbidden, raising questions for the ECtHR on the proportionality of any interferences with a person’s physical or mental health.23 The following assertion by the ECtHR, in the framework of voting rights, is of strategic relevance when evaluating coerced medical and other interventions on persons with intellectual disabilities: . . . if a restriction on fundamental rights applies to a particularly vulnerable group in society, who have suffered considerable discrimination in the past, such as the mentally disabled, then the state’s margin of appreciation is substantially narrower and it must have very weighty reasons for the restrictions in question.24
18 Chairman’s Text as amended by the International Disability Caucus, available at: . 19 United Nations, Ad Hoc Committee, Interim Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its eighth session UN Doc A/AC265/2006/4 (2006). 20 X and Y v the Netherlands (1986) 8 EHRR 235; Pretty v the United Kingdom (2002) 35 EHRR 1 paras 61 and 63; Y.F. v Turkey (2003) 39 EHRR 715 para 33; see also eg Estelle Brosset, ‘La Fin de la Vie et le Droit Européen’ in Stefania Negri (ed), Self-Determination, Dignity and End-of Life Care: Regulating Advance Directives in International and Comparative Perspective (Martinus Nijhoff 2012) 87 ff. 21 Bensaid v the United Kingdom (2001) 33 EHRR 10 para 47. 22 Drobnjak v Serbia (2009) ECHR 1526 paras 140–41. 23 CRPD Committee, ‘Concluding Observations on the Initial Report of the United Kingdom of Great Britain and Northern Ireland’ UN Doc CRPD/C/GBR/CO/1 (3 October 2017) para 41. 24 Aron Kiss v Hungary, (2010) ECHR 1649 para 42. On the issue, see János Fiala-Butora, Michael Ashley Stein, Janet E Lord, ‘The Democratic Life of the Union: Toward Equal Voting Participation for Europeans with Disabilities’ (2014) 55 Harvard International Law Journal 72; Antoine Buyse, ‘Judgment on Voting Rights for the Mentally Disabled’, ECHR Blog, 9 November 2017, available at: (accessed 13 November 2017); Ed Bates, ‘Analysing the Prisoner Voting Saga and the British Challenge to Strasbourg’ (2014) 14(3) Human Rights Law Review, 504– 40; see also Mary Keys, ‘Article 12’ in Valentina Della Fina, Rachele Chera, Giuseppe Palmisano (eds), The United Nations Convention on the Rights of Persons with Disabilities (Springer 2016) 274. 25 CoE, Commissioner for Human Rights, The Right of People with Disabilities to Live Independently and Be Included in the Community—CommDH/IssuePaper (2012) 3 12 March 2012, available at: . 26 27 Amplius, see Mary Keys (n 23) 274. Stork v Germany (2005) ECHR 406. 28 Glass v the United Kingdom (2004) ECHR 103. 29 On the issue, see Richard Huxtable, Karen Forbes, ‘Glass v United Kingdom: Maternal Instinct v Medical Opinion’ (2004) 16 Child and Family Law Quarterly 339–54. 30 Recognized in Case C-377/98 Netherlands v Parliament and Council, a judgment dealing with the patentability of the human genome. The CJEU held, among other things, that: ‘. . . is for the Court of Justice, in its review of the compatibility of acts of the institutions with the general principles of Community law, to ensure that the fundamental right to human dignity and integrity is observed’, and that ‘. . . all processes the use of which offend against human dignity are also excluded from patentability so that the EU Directive and that (. . .) human dignity is thus safeguarded’ because ‘. . . human living matter could not be reduced to a means to an end’.
seatzu
Article 17
499
The scope, content and level of protection offered by the right to personal integrity enshrined in article 3 of the EUCFR are marked by four essential factors that will be considered in turn: the duty of EU institutions and organs to respect article 3 of the EUCFR, the interaction of the right to personal integrity with EU patentability rights and standards concerning the use of human embryos, its relationship with article 8 of the ECHR, and its interaction between the various elements that this provision covers and with other EUCFR provisions. The scope of application of every EUCFR right is restricted by article 51 of the EUCFR, which provides that ECFR rights are addressed to the institutions, bodies, offices, and agencies of the EU, and to the member states, only when they implement EU law. In this respect, the obligation of EU institutions to respect article 3 of the EUCFR has been made manifest in the ECJ judgment on the joined cases C-148/13 to C-150/ 13 A, B, and C v Staatssecretaris van Veiligheid en Justitie, where the Court, following the Advocate-General Sharpston, held that verification practices under the EC Council Directive 2004/83/EC of 29 April 2004 on minimum standards for the qualification and status of third country nationals or stateless persons as refugees (Asylum Qualification Directive) such as medical tests aiming at establishing the applicant’s sexual orientation and explicit questions concerning an applicant’s sexual activities and proclivities were inconsistent with articles 3 (right to integrity) and 7 (right to private life) of the EUCFR, even if consented to by the applicant.31 Even before the entry into force of the EUCFR, the impact of the right to personal integrity on the issue of the scope of EU patentability rights and standards concerning the use of human embryos was discussed in the aftermath of the pronouncement of the Court in the Oliver Brüstle v Greenpeace.32 In that case, the right to personal integrity played a crucial, though indirect, role in permitting the Court to find that ‘the exclusion from patentability concerning the use of human embryos for industrial or commercial purposes in article 6 (2) (c) of the Biotech Directive also covers uses for purposes of scientific research’.33 Moreover, it also played a key, though indirect, role in allowing the Court to extend the exclusion from patentability encompassed in article 6 (2) (c) of the same Directive to the use of human embryonic stem cells that were derived from the previous destruction of a human embryo, even where the destruction occurred long before the implementation of the invention.34 The EUCFR right, encompassed in art 3 corresponds, as mentioned above, to article 8 of the ECHR. According to article 52 (3) of the EUCFR, the meaning and scope of the rights of the EUCFR analogous to ECHR rights must be deemed equivalent to those encompassed by the ECHR, regardless of the possibility that EU law provides for more substantial protection. As a result of this, the EUCFR’s right to physical and mental integrity is significantly substantiated by a extensive body of case-law defining and interpreting the implications of the right to personal integrity. Nonetheless, article 3 is autonomous in scope. Yet, as opposed to article 8 of the ECHR, it does not encompass the particular contents of home and correspondence that received a particularized treatment in the 31 European Court of Justice, A, B and C v Staatssecretaris van Veiligheid en Justitie (Cases C-148/13 to C-150/13) 11 December 2014 para 73. 32 European Court of Justice, Oliver Brüstle v Greenpeace (Case C-34/10) (2010/C 100/29) 18 October 2011; for a commentary, see Tade Matthias Spranger, ‘Oliver Brüstle v Greenpeace eV, Judgment of the Court (Grand Chamber) of 18 October 2011’ (2012) 49 Common Market Law Review 1197–210. 33 34 European Court of Justice Oliver Brüstle v Greenpeace (n 32) para 46. ibid para 41.
seatzu
500
Protecting the Integrity of the Person
EUCFR, with two additional articles, articles 7 and 8 of the EUCFR, devoted to these and other issues. Moreover, even if the ECHR level of protection functions as the minimum threshold, the EUCFR can offer a heightened standard of protection. Up to the present, nevertheless, the EUCFR has had a supportive rather than a primary role. As Brice Dickson puts it, ‘the EUCFR has not been a primary source which in some way usurps the ECHR itself ’.35 The interrelationship of article 3 with other EUCFR articles, particularly article 7, could give rise to some problems. This is clear if one considers that both articles 3 and 7 would seem to be involved where the right to personal integrity is engaged.36 Nevertheless, the insertion of article 3 as a separate provision from article 7 shows that article 3, unlike the wider in scope article 7, applies whenever mental and physical integrity are at issue.37 With that said, considering the strict interrelation between personal integrity and health, article 3 could, to some extent, overlap with article 35 that incidentally protects personal integrity by prescribing a positive duty on states to supply access to health care. But this is not all; article 3 could also overlap with article 2 on the right to life, which can be affected, for instance, when a subject does not give his or her consent to life-sustaining medical interventions and treatments. Moreover, it could further overlap with article 4, the right to be free from torture and inhuman treatment, for instance when the provision of non-consensual medical treatment reaches a level of extreme severity. Furthermore, a potential conflict between article 3 and articles 7 (family life aspects) and 9 (the right to marry and the right to found a family) might arise in the framework of the prohibition of cloning, in particular when reproductive cloning could be the only chance to have a genetically related child.38
5. The Right to Personal Integrity As article 17 represents the first explicit statement of a right to physical and mental integrity in a universal human rights convention,39 it is worth considering further the scope of this new expression of the right and if it does in fact go beyond the substance of existing international human rights provisions. In this section, I will address how the scope of the right has been shaped by the interpretation given by the CRPD Committee—first in the interactions that it had with the sixty states parties examined at the time of writing and in references to article 17 in its Reporting Guidelines for article 1740—and further in scholarly works on the core content of this right to integrity. In the first instance, the framing of the right in the text of article 17 itself is interesting. The first and only paragraph of article 17 is primarily focused on non-discrimination 35 See Brice Dickson, ‘The EU Charter of Fundamental Rights in the Case Law of the European Court of Human Rights’ (2015) 1 European Human Rights Law Review 27–40. 36 On this issue, see Sabine Michalowski, ‘Art. 3—Right to the Integrity of the Person’, in Stephen Peers, Tamara Hervey, Jeff Kenner, Angela Ward (eds), The European Union Charter of Fundamental Rights (Hart 2004) 42. 37 38 ibid. ibid. 39 See Arlene S Kanter, The Development of Disability Rights Under International Law: From Charity to Human Rights (Routledge 2015) 202. 40 CRPD Committee, Guidelines on treaty-specific document to be submitted by states parties under article 35, paragraph 1, of the Convention on the Rights of Persons with Disabilities, available at: .
seatzu
Article 17
501
issues. It also uses the terminology of the ‘right to personal integrity’—that is not further defined in the text of article. Interestingly, it avoids the traditional language that the describes the right to personal integrity as the right to bodily integrity, though again without giving any explanation for that. This approach leaves a number of uncertainties, including uncertainty whether the scope of application of article 17 can be expanded through interpretation to encompass the right to cognitive liberty and the right to psychological continuity, both belonging to a new sub-category of human rights called ‘neurorights’.41 Marcello Ienca and Roberto Adorno implicitly seem to believe that this uncertainty should be resolved in the affirmative.42 Yet it should be emphasized that this is only an academic opinion, not yet supported by the practice of the CRPD Committee. Spain was one of the first countries to be examined by the CRPD Committee, and personal integrity emerged as a key issue in this dialogue. The Committee, in its List of Issues, had demanded additional information on the right to personal integrity from the state party.43 In response, Spain replied that this issue was already encompassed by article 200 of the Código Civil which lays down the criteria for declaring a person incapacitated and by article 156 of the Código Penal that deals with the sterilization of incompetent persons with severe mental impairments.44 Spain has also held that free consent to medical treatment was ensured as far as possible in relation to persons with disabilities.45 Nevertheless, it is worth recalling that in CERMI’s shadow report on Spain a very different scenario in relation to the informed consent from persons with intellectual disabilities was described.46 This report raised concerns about the fact that the sterilization of persons with intellectual disabilities who have been legally incapacitated without their consenting to this mutilating practice is allowed under the Spanish legal order. From this the recommendation of the CERMI State Delegation for the CRPD to amend the Penal Code to remove the decriminalization of sterilization without the consent of the person concerned when this person has a disability. It is worth noting that the same recommendation was also followed by the CRPD Committee in its Concluding Observations on article 17 to Spain.47 In its dialogue with Italy, the CRPD Committee requested additional information on the number of children who have had surgery for intersex variation without their consent, as well as other medical treatment without free and informed consent, following up on a previous observation from the Committee on the Right of the Child (CCR).48 It is interesting to note that, in its response, Italy has not contested the existence of a practice
41 See Marcello Ienca, Roberto Andorno, ‘A New Category of Human Rights: Neurorights’, available at: . 42 ibid. 43 CRPD Committee, ‘List of issues to be taken up in connection with the consideration of the initial report of Spain’ UN Doc CRPD/C/ESP/1 (2 June 2016), concerning articles 1 to 33 of the Convention on the Rights of Persons with Disabilities, CRPD/C/ESP/Q/1 para 16. 44 CRPD Committee, ‘Respuestas del Gobierno de España a la lista de cuestiones’ UN Doc CRPD/C/ ESP/Q/1 (2 July 2016) ‘que deben abordarse al examinar el informe inicial de España’ (CRPD/C/ESP/1) paras 84–89. 45 ibid. 46 CERMI, Human Rights and Disability: An Alternative Report on Spain (Madrid, 2010), available at: www. convenciondiscapacidad.es. 47 ibid para 57. 48 CRPD Committe, ‘List of issues to be taken up in connection with the consideration of the initial report of Italy’ UN Doc CRPD/C/ITA/Q/1 (3 October 2017), concerning articles 1 to 33 of the Convention on the Rights of Persons with Disabilities CRPD/C/ITA/Q/1 para 18.
seatzu
502
Protecting the Integrity of the Person
of intersex genital mutilations (IGM) in Italy.49 It has held that, according to available data in 2014, surgical admissions under the age of eighteen referring to intersex variations amounted to thirty-four, of which twenty-three under the age of ten.50 Moreover, also worth recalling is that in a telling answer during Session 2 on 25 August 2016, Italy has further held that the Italian recommendations on bioethics had developed recommendations for health professionals in order to avoid unnecessary mutilations and prevent the loss of procreation capacity.51 The NGO Italian Disability Forum highlighted various inconsistencies in the government’s responses to these questions, including the fact that the data given on IGM were suspiciously low and lacking the statistically expected sampling errors.52 While the CRPD Committee did express concern in its Concluding Observations on article 15 (Freedom of torture or cruel inhuman or degrading treatment or punishment) that insufficient measures had been taken to avoid forced medical interventions on persons with disabilities without their free and informed consent, in light of the previous remark, it did not make broader Concluding Observations on the protection of personal integrity under article 17.53 Nevertheless, the CRPD Committee did make recommendations on the abolition of practices of non-consensual sterilization of women labelled as having an intellectual disability specifically, in its Concluding Observations on Canada, on the basis that such individuals were at higher risk of becoming victims of forced medical treatments.54 In light of this, the CRPD Committee demanded the State Party to: ‘. . . ensure that health-care and substitute decision-making practices prevent involuntary sterilization, including in situations where persons with disabilities are deemed to lack legal capacity to consent’ and to ‘ensure the development of human rights education and training programmes for health-care providers to prevent non-consensual sterilization and/or manipulated consent of people with disabilities’.55 The issue of forced medical treatments for persons with disabilities was also highlighted in the Concluding Observations on Montenegro, where the Committee recommended that the State ‘expedite all necessary legal amendments to ensure that any form of medical or other scientific research may not be carried out on persons with disabilities without their prior, informed and fully voluntarily given consent’.56 The Committee has addressed the issue of non-consensual medical treatments in its Concluding Observations on Morocco,57 requiring Morocco to ‘prohibit and criminalize
CRPD Committe ‘Replies of Italy to the list of issues’ UN Doc CRPD/C/ITA/Q/1/Add 1 para 36. ibid. 51 On this issue, see ‘Italy > UN-CRPD investigates Intersex Genital Mutilations’, available at: . 52 For further references, see Rosario Coco, ‘Intersex: anche le Nazioni Unite contro mutilazioni genitali in Italia’, available at: (accessed 22 October 2017). 53 CRPD Committee, ‘Concluding Observations on the Initial Report of Italy’ UN Doc CRPD/ITA/C/1 (2 June 2016) paras 39–42. 54 CRPD Committee, ‘Concluding Observations on the Initial Report of Canada’ UN Doc CRPD/C/ CAN/CO/1 (May 2016) paras 35–36. 55 ibid para 36. 56 CRPD Committee, ‘Concluding Observations on the Initial Report of Italy’ UN Doc CRPD/ITA/C/1 (2 June 2016) para 32; CRPD Committee, ‘Concluding Observations on the Initial Report of Montenegro’ UN Doc CRPD/C/MNE/CO/1 (2 June 2017) paras 39–42. 57 CRPD Committee, ‘Concluding Observations on the Initial Report of Morocco’ UN Doc CRPD/C/ MAR/CO/1 (2 June 2017) paras 39–42. 49 50
seatzu
Article 17
503
the practice of corrective surgeries on intersex persons with disabilities, in the lack of prior and informed consent, and the practice of forced sterilization, including forced chemical castration’58 and Republic of Moldova ‘to repeal and amend any legislation and regulations permitting the forced or involuntary sterilization of persons with disabilities, and to prevent and stop the use of non-consensual contraceptive measures, including cases where consent is given by a third party’.59 Concerns regarding forced medical treatments are also echoed in the Committee’s Concluding Observations on Cyprus, which recommends that ‘the State party take immediate steps to abolish all forms of guardianship and ensure, including through supported decision-making and adequate counselling, that any subjection to intrusive medical or surgical treatment without the individual, prior, and fully free and informed consent, is prevented, and that personal integrity, autonomy, and self-determination of persons with disabilities is guaranteed in accordance with General Comment No 1 (2014), with a particular focus on women and girls with disabilities’.60 In addition, the Committee further requires that the state party ‘adopt appropriate safeguards in order to ensure that persons with disabilities enjoy full autonomy with respect to their sexual and reproductive rights, on an equal basis with others, including by enabling them to retain their fertility, and that awareness of that issue be promoted among health professionals and the general public’.61 Sterilization of persons with disabilities without their consent was addressed by the Committee in its Concluding Observations on Colombia,62 in the context of a legal practice that allowed the sterilization of persons with disabilities including children with cognitive and psychosocial disabilities without their consent, and with the authorization of a judge. The Committee requested the state to adopt the indispensable steps to eliminate the sterilization of persons with disabilities without their free and informed consent, including the abrogation of article 6 of Act No 1412 of 2010 that allowed this practice to continue.63 Further, the Committee recommended immediately taking measures, including also the training of judges and prosecutors, with the involvement of representative entities of persons with intellectual disabilities, on the freedoms and rights of persons with disabilities and the international duties of the state party, mainly those relating to non-discrimination on grounds of disability and the personal integrity of children with intellectual disabilities.64 Finally, the Committee continued this approach against forced medical treatments in some of the most recent Concluding Observations available at the time of writing—with requests to Bosnia and Herzegovina to ‘adopt effective measures to ensure respect for the right of free, informed and prior consent by persons with disabilities for medical treatment, and to provide efficient support mechanisms for decision-making in the State party’65 and to Honduras to ‘adopt all necessary measures to ensure that no women or ibid para 37. CRPD Committee, ‘Concluding Observations on the Initial Report of the Republic of Moldova’ UN Doc CRPD/C/MDA/CO/1 (June 2017) para 35. 60 United Nations Committee on the Rights of Persons with Disabilities, Concluding Observations: Cyprus UN Doc CRPD/C/CYP/CO/1 (2017) para 42. 61 ibid. 62 CRPD Committee, ‘Concluding Observations on the Initial Report of Colombia’ UN Doc CRPD/C/ COL/CO/1 (2 July 2017) para 46. 63 64 ibid. ibid. 65 CRPD Committee, ‘Concluding Observations on the initial Report of Bosnia and Herzegovina’ UN Doc CRPD/C/BIH/CO/1 (3 July 2017) para 33. 58 59
seatzu
504
Protecting the Integrity of the Person
girls with disabilities are subject to forced sterilization or abortion and that all medical procedures and treatments concerning persons with disabilities are contingent on their free and informed consent’.66 These recommendations reflect the firm rejection of any medical treatment without the patient’s consent emerging from the Committee’s case-law to present. Nevertheless, it must be observed that in some of the countries examined at the time of writing, the Committee has chosen not to issue any specific recommendations on article 17 but does address forced treatment issues in its Concluding Observations under other articles— especially article 15 (Freedom from Torture or Cruel, Inhuman, or Degrading Treatment or Punishment). This is however not surprising, given that forced medical treatment can amount to torture and ill-treatment without the person’s free and informed consent,67 and also given that state obligations to prevent torture apply ‘not only to public officials . . . but also to doctors, health-care professionals, and social workers, including those working in private hospitals’.68
5.1 Seclusion and Restrain The purpose of this section is to consider seclusions (sometimes referred to as solitary confinements) and restrains (sometimes referred to as use of force) of intellectually disabled persons detained in psychiatric institutions. Seclusion is generally defined as: ‘The involuntary confinement of [an individual] alone in a room or area from which the [individual] is physically prevented from leaving.’ The term restrain refers to ‘Any manual method, physical or mechanical device, material, or equipment . . . that he or she cannot easily remove that restricts freedom of movement or normal access to one’s body.’ More precisely, the focus of the present section is on solitary confinements and restraints that, because of their short length and/or specific modalities of implementation, are not serious enough to be qualified as acts of torture or other cruel, inhuman, or degrading treatment and thus as breaches of article 15 of the CRPD. Bernadette McSherry put forward the view that article 17 should be interpreted as limiting but not prohibiting these and other types of involuntary restrictions of the right to physical and mental integrity.69 In McSherry’s view, article 17 would not even limit any, but only certain involuntary treatments. The main argument used to maintain this conclusion, namely the inexistence of an absolute ban of seclusion and restrain, is that it would be hard ‘to imagine legalized involuntary treatment schemes such as restraint and seclusion readily disappearing’.70 Although this may be certainly true it is also a fact that 66 CRPD Committee, ‘Concluding Observations on the Initial Report of Honduras’ UN Doc CRPD/C/ HND/CO/1 (3 May 2017) para 44. 67 See Ronli Sifris, ‘Conceptualising Involuntary Sterilisation as “Severe Pain or Suffering” for the Purposes of the Torture Convention’ (2010) 24 Netherlands Quarterly of Human Rights 523, 531; János Fiala-Butora, ‘Disabling Torture: The Obligation to Investigate Ill-treatment of Persons with Disabilities’ (2013) 45 Colum Human Rights L Rev 233; Michael Schwartz, ‘Deafness in Vietnam: Will the United Nations Convention on the Rights of Persons with Disabilities Make a Difference?’ (2007) 32 Syracuse Journal of International Law and Commerce 483; Francesco Seatzu, ‘Sulla detenzione ed il trattamento sanitario coattivo di soggetti malati di mente alla luce della Convenzione europea dei diritti dell’uomo’ (2004) 8 Rivista della cooperazione giuridica internazionale 40 ff. 68 UN Special Rapporteur on Torture and Other Cruel, Inhuman, or Degrading Treatment or Punishment ‘Report of the Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment’ UN Doc A/HRC/22/53 (2013) paras 13, 24. 69 70 See McSherry (n 6) 121–22. ibid.
seatzu
Article 17
505
this reading of article 17 does not accord well neither with article 14(1)(b) of the CRPD which provides that: ‘the existence of a disability shall in no case justify a deprivation of liberty’, nor with article 16 of the CRPD. Article 16 provides that states shall ‘take all appropriate measures to prevent all forms of exploitation, violence and abuse. . . .’ Of course this is unless one wants to deny that forced seclusion and restrain potentially constitute a form of violence, or, what would also be hard to contest, that article 17 must be read in light of articles 14 and 16. Moreover, it is equally a fact that this reading of article 17 does not fit well with the central role recognized to the free and informed consent of persons with disabilities, including persons with psychosocial disabilities, prior to any treatment in the CRPD.71 Again, this is a reading that cannot be reconciled with the words of a recent report submitted to the United Nations Human Rights Council by the United Nations Special Rapporteur on Torture and Other Cruel, Inhuman, or Degrading Treatment or Punishment that has called for ‘an absolute ban’ on the use of seclusion and restraint in mental health facilities.72 Furthermore, and equally significantly, this is a reading that does not fit well with the rationale behind the withdrawal of paragraph 4 of the draft article 17 concerning involuntary treatments from the final version of article 17. Regarding the latter observation, it is worth recalling that article 17 (4) was deleted (as also acknowledged by Bernadette McSherry)73 ‘not to allow these treatments, but only because it sets out principles used to legitimized abuse through involuntary treatment and represented a lower standard for persons with disabilities with regard to free and informed consent’.74 Incidentally, corresponding remarks also apply to Michalowski’s narrowly reading of article 17 as only protecting those unable to consent from ‘unbeneficial treatment’.75
5.2 Forced Sterilization The other crucial issue at stake in article 17 concerns the involuntary sterilization of women and girls with disabilities. It is well known that high numbers of women and girls with disabilities, all over the world, suffered forced sterilization. Forced sterilization can be defined as a coercive family planning method which involves surgically removing or disabling reproductive organs without full or informed consent.76 It has often been classified by international human rights bodies and advocates who are opposed to this practice as a form of violence.77 This is the case, for instance, 71 See ex multis Tina Minkowitz, ‘The United Nations Convention on the Rights of Persons with Disabilities and the Right to Be Free from Nonconsensual Psychiatric Interventions’ (2007) 34 Syracuse Journal of International Law and Commerce, 405 ff; Jo Durham, Claire E Brolan, Bryan Mukandi, ‘The Convention on the Rights of Persons With Disabilities: A Foundation for Ethical Disability and Health Research in Developing Countries’ (2014) 11 Am J Public Health, 2037–43; Fiona Morrissey, ‘The United Nations Convention on the Rights of Persons with Disabilities: A New Approach to Decision-Making in Mental Health Law’ (2012) 19 Eur J Health Law 423–40. 72 73 74 See (n 48). See (n 14). McSherry (n 6) 121. 75 See Sabine Michalowski, ‘Health Care Law’ in Stephen Peers, Tamara Hervey, Jeff Kenner, Angela Ward (eds), The European Union Charter of Fundamental Rights (Hart 2004) 295–96. 76 See Elisabeth Miller, Jay G Silverman, ‘Reproductive Coercion and Partner Violence: Implications for Clinical Assessment of Unintended Pregnancy’ (2010) 5 Journal Expert Review of Obstetrics & Gynaecology 511–15. 77 On this issue see eg Robyn M Powell, Michael Ashley Stein, ‘Persons with Disabilities and Their Sexual, Reproductive, and Parenting Rights: An International Comparative Analysis’ (2016) 11 Frontiers of Law in China, 71 ff; Leanne Dowse, ‘Moving Forward or Losing Ground? The Sterilisation of Women and Girls with Disabilities in Australia, Women with Disabilities Australia’ (2004), available at: ;
seatzu
506
Protecting the Integrity of the Person
of the United Nations Committee on the Rights of the Child (CRC) that has specifically addressed forced sterilization of persons with disabilities under the age of 18 years as a form of physical violence.78 Things being such, it is possible to understand why Article 16 of CRPD has been considered breached whenever a state fails to take all appropriate legislative, administrative, social, educational, and other measures to protect women and girls with disabilities from forced sterilization and/or whenever a state fails to provide information, education, assistance, and support for persons with disabilities and their families on how to avoid and report instances of forced sterilization, and/or again when a state omits to enact effective legislation and policies to ensure that instances of forced sterilization of women and girls with disabilities are identified, investigated and, where appropriate, prosecuted.79 Moreover, it is possible to understand why it has also been often claimed that allowing women and girls with disabilities to be sterilized without their consent violates Article 23 of the CRPD.80 Article 23(1)(c), the only provision under international law to address the issue of sterilization explicitly, requires states to take effective and appropriate measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood, and relationships, on an equal basis with others, so as to ensure that persons with disabilities, including children, retain their fertility on an equal basis with others.81 That said, the question that confronts us is whether instances of involuntary non- therapeutic sterilization of women and girls with intellectual disabilities could also be foreseen as breaches of their right of personal integrity. The reason behind this question is easy to see: given the nature of the right to personal integrity as a civil right a positive answer to it would allow that the CRPD contains not a relative but an absolute prohibition to do forced sterilization to women and girls with disabilities without their consent. As explained below, this is however far from being an uncontested claim. John Tobin and Elliot Luke held that a substantive engagement with human rights shows that in limited circumstances an involuntary sterilization of a woman or girl with a profound intellectual disability is admissible where there is no reasonably available alternative and the procedure is indispensable to secure her right to health.82 And, interestingly to note, this would be so regardless of the fact that there has been a clear tendency by international human rights bodies and advocates who are opposed to this practice to
Priti Patel, ‘Forced Sterilization of Women as Discrimination’ (2017) 38 Public Health Reviews, available at: . 78 CRC Ctee, General Comment No 9 (2006): The rights of children with disabilities, UN Doc CRC/C/ GC/9 (27 February 2007) para 60. 79 For further reference on these issues see eg Anne-Marie Callus, Ruth Farrugia, The Disabled Child’s Participation Rights (Abingdon 2016), 25; Alice Farmer, Impairing Education: Corporal Punishment of Students with Disabilities in US Public Schools (Human Rights Watch Press 2009) 60. 80 CRPD Committee, ‘Concluding Observations on the Initial Report of Bosnia and Herzegovina’ UN Doc CRPD/C/BIH/CO/1 (3 May 2017) para 33; CRPD Committee, ‘Concluding Observations on the Initial Report of China’ UN Doc CRPD/C/CHN/CO/1 (3 May 2017) para 34; CRPD Committee, ‘Concluding observations on the Initial Report of Hungary’ UN Doc CRPD/C/HUN/CO/1 (3 June 2012) para 38; CRPD Committee, ‘Concluding observations on the Initial Report of Peru’ UN Doc CRPD/C/PER/CO/1 (2 June 2012) para 35. 81 See Valentina Della Fina, ‘Respect for Home and the Family’ in Valentina Della Fina, Rachele Cera, Giuseppe Palmisano (eds), The United Nations Convention on the Rights of Persons with Disabilities: A Commentary (Springer 2017) 417–38. 82 See John William Tobin, Luke Elliot, ‘The Involuntary, Non-Therapeutic Sterilisation of Women and Girls with an Intellectual Disability—Can it Ever Be Justified?’ (2013) 3 Victoria University Law & Justice Journal 27 ff.
seatzu
Article 17
507
argue that rights such as equality, non-discrimination, and bodily integrity prohibit such treatment without free and informed consent.83 Of course, as these authors explain, when assessing reasonableness, the medical evidence must support the necessity for such a procedure and the option of all other reasonably available reversible contraceptive treatments should have been previously exhausted.84 It is the author’s present view that though article 17 makes no direct reference to involuntary, non-therapeutic sterilization of women and girls with an intellectual disability, its provision makes clear that forced sterilization is prohibited. This conclusion is a clear implication of the states parties’ obligation to secure bodily integrity of persons with disabilities on an equal basis with others and it is also strengthened by article 25 of the Convention, according to which healthcare shall be provided on the basis of free and informed consent. In addition, it is worth recalling that the core content of article 17 is to protect persons with disabilities ‘from any forced intervention aimed at correcting, improving, or alleviating any actual perceived impairment, and abduction’ as explained in the draft article 17(2) presented at the Seventh Session of the Working Group.85 In that respect, there is a strong presumption that the instances of forced sterilization of persons with intellectual disabilities is in itself not in conformity with article 17. Again, such a presumption is strengthened by the CRPD Committee’s Concluding Observations in relation to Germany, recommending that legislation is required to explicitly prohibit sterilization without consent and the elimination of all exceptions, including court approval or substitute consent.86 With this in mind, though one cannot infer from the wording of article 17 an obligation on states parties to ban involuntary sterilizations, it is correct to affirm that with a view to ensuring to women and girls with disabilities the right to personal and mental integrity, states parties do have, under article 17, an obligation to start and carry out legislative reforms to facilitate the introduction of a ban on forced sterilization of any women and children of disabilities. Prohibition of non consensual sterilization of women and girls with disabilities requires a systemic approach, in which the probation of instances of forced sterilization is only one element of a wider change in areas such as support services and health, as well as in the social perception of disability.
83 See eg Report of the Special Rapporteur on the Right of Everyone to the Enjoyment of the Highest Attainable Standard of Physical and Mental Health, UN General Assembly UN Doc A/64/272; Women With Disabilities Australia (WWDA), Human Rights Watch (HRW), Open Society Foundations, & International Disability Alliance (IDA), ‘Sterilization of Women and Girls with Disabilities: A Briefing Paper’ (October 2011), available at: ; Stephanie Ortoleva, Hope Lewis, ‘Forgotten Sisters—A Report on Violence Against Women with Disabilities: An Overview of its Nature, Scope, Causes and Consequences’ (2012) Northeastern University School of Law Research Paper No 104-2012, available at: . 84 See Tobin, Elliot (n 63). 85 United Nations, Ad Hoc Committee, Report of the Working Group to the Ad Hoc Committee Annex I: Draft Article 12 A/AC265/2004/WG/1 (5–16 January 2004). 86 CRPD Committee, ‘Concluding Observations on the Initial Report of Italy’ UN Doc CRPD/ITA/C/1 (2 June 2016) paras 39–42. CRPD Committee, ‘Concluding Observations on the Initial Report of Germany’ UN Doc CRPD/C/DEU/CO/1 (3 May 2017) para 38.
seatzu
Article 18 Liberty of Movement and Nationality . States Parties shall recognise the rights of per1 sons with disabilities to liberty of movement, to freedom to choose their residence and to a nationality, on an equal basis with others, including by ensuring that persons with disabilities: (a) Have the right to acquire and change a nationality and are not deprived of their nationality arbitrarily or on the basis of disability; (b) Are not deprived, on the basis of disability, of their ability to obtain, possess and utilise documentation of their nationality or other documentation of identification, or to utilise relevant processes such
as immigration proceedings, that may be needed to facilitate exercise of the right to liberty of movement; (c) Are free to leave any country, including their own; (d) Are not deprived, arbitrarily or on the basis of disability, of the right to enter their own country. 2 . Children with disabilities shall be registered immediately after birth and shall have the right from birth to a name, the right to acquire a nationality and, as far as possible, the right to know and be cared for by their parents.
1. Introduction 2. Background and Travaux Préparatoires 3. Paragraph 1 3.1 Chapeau of Paragraph 1
3.1.1 ‘right of persons with disabilities to liberty of movement . . . freedom to choose their residence and to a nationality’ 3.1.2 Liberty of Movement and Residence 3.1.3 Interlinkages with Other Rights 3.1.4 Movement within the Borders of a Country 3.1.5 Freedom of Choice of Travel
3.2 Paragraph 1(a): Have the Right to Acquire and Change a Nationality and [to] not [Be] Deprived of . . . Nationality Arbitrarily or on the Basis of Disability 3.3 Paragraph 1(b) 3.4 Paragraph 1(c): Are Free to Leave Any Country, Including Their Own 3.5 Paragraph 1(d) 4. Paragraph 2
508 510 513 513 513 514 516 518 519 520 522 526 527 528
1. Introduction Persons with disabilities find that their rights to liberty of movement, residence, as well as to a nationality are violated or abused on a regular and on-going basis: they are declined entry into countries based on past or present psychosocial disabilities;1 deaf persons 1 World Network of Users and Survivors of Psychiatry, ‘Implementation Manual for the United Nations Convention on the Rights of Persons with Disabilities’ (February 2008).
mute
Article 18
509
encounter limitations on their right to obtain a driver’s licence with consequent limitations on employment and social possibilities;2 and persons with disabilities are denied reasonable accommodations to enable them to commute on airlines.3 At the same time, legal and administrative barriers are used to stop refugees or migrants with disabilities from crossing country borders on a basis of equality, and persons with disabilities displaced by humanitarian conflicts suffer the triple disadvantages of being outside their countries of origin; having no protections of citizenship or residence, and living in fear of persecution in the event of repatriation; and having disabilities.4 Persecution that may engender refugee status can be specific to persons with disabilities in respect of forms of harm that are particular to them (such as the sexual exploitation of persons with psychosocial disabilities), or in respect of actions that would not amount to persecution when inflicted on persons without disabilities (such as those entailing absence of reasonable accommodations).5 The United Nations Convention on the Rights of Persons with Disabilities (‘CRPD’ or ‘Convention’) guarantees and protects the rights of persons with disabilities to the freedoms of movement, residence, and nationality on an equal basis with other persons. Persons with disabilities may leave their countries on an equal basis with others, and they may not be arbitrarily deprived, on the basis of disability, of the right to enter their countries. These rights, which are established in article 18 of the CRPD, are cardinal to the full realization of that Convention and play critical twin roles. Firstly, they establish actionable distinct rights while, secondly, they play indispensable facilitative functions for enabling persons with disabilities to have full and equal enjoyment of all human rights and fundamental freedoms. The general principles established in article 3 of the CRPD indeed reflect the relevance of these three rights: the individual autonomy of persons with disabilities, their protection from discrimination, as well as their full and effective inclusion in society cannot be realized when article 18 rights are being violated. In the same vein, society affirms its acceptance of persons with disabilities as part of human diversity and humanity by ensuring that policies, laws, or practices do not bar persons with disabilities from interacting and discoursing with the rest of society. Finally, equality of opportunity cannot be realized when barriers to movement and nationality are placed in the way of persons with disabilities or indeed when the physical environment is not accessible to them. This chapter explains the principles and norms that informed the drafting of article 18 of the Convention. It discusses the specific meanings of the various elements of the article. It also assesses how international and domestic jurisdictions have begun to interpret article 18. National Association of the Deaf, ‘Deaf People and Human Rights’ (January 2009). Brian Wasuna, ‘Disabled Doctor Sues Fly 540 After Being kicked Out of Nairobi flight’ Nairobi News (16 December 2016), available at: . Airlines have been fined for not letting passengers with disabilities to board their planes. A French court has, for example, found as discriminatory the airline policy requiring persons with disabilities to mandatorily travel with a companion. In Gianmartini et al v Easyjet the TGI Bobigny and Paris Court of Appeal decided that Easyjet’s accompanying person policy discriminated travellers with disabilities, and it fined the airline 70,000 Euro. This decision was affirmed by the Criminal Chamber of the Court of Cassation—see Cass crim 15 décembre 2015, Bull crim 2015 n° 286. 4 Mary Crock et al, ‘Where Disability and Displacement Intersect: Asylum Seekers and Refugees with Disabilities’ (2012) 24 Int’l J Refugee L 736. 5 ibid 748. 2 3
mute
510
Liberty of Movement and Nationality
2. Background and Travaux Préparatoires The need for provisions on liberty of movement for persons with disabilities had been demonstrated time and again by accounts of participants with disabilities to the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Rights of Persons with Disabilities (Ad Hoc Committee) who were denied access to airports or refused transportation by airlines.6 Yet early drafts of what became the CRPD did not include provisions on liberty of movement and the right to nationality, and substantive discussions on these matters did not happen until the seventh session of the Ad Hoc Committee which took place between 16 January and 3 February 2006. Prior to that, the sixth session of the Ad Hoc Committee, held between 1–12 August 2005, had agreed to the inclusion of an article on liberty of movement, noting this was an area where persons with disabilities were often disadvantaged, for example, through non-registration of births or denial of passports.7 The initial text of the article was an abbreviated form of a proposal during the sixth Ad Hoc session8 first made by Kenya9. Canada also made substantive proposals,10 as did the International Disability Caucus (IDC).11 The abbreviated text provided as follows: States Parties shall take effective measures to respect and ensure the rights of persons with disabilities to liberty of movement on an equal basis with others, including by ensuring that persons with disabilities: (a) Have the right to acquire a nationality and are not deprived of their nationality arbitrarily or on the basis of disability;
6 Marianne Schulze, Understanding the UN Convention on the Rights of Persons with Disabilities (Handicap International 2010) 109, available at: . 7 Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its Sixth Session UN Doc A/60/266 (17 August 2005) para 76. 8 Seventh Session, New York, 16–27 January 2006, letter dated 7 October 2005 from the Chairman to all members of the Committee, para 72, available at: . 9 Kenya had proposed the following as Art 20 bis on liberty of movement:
States Parties to this Convention shall take effective measures to respect and ensure the rights of all persons with disabilities to liberty of movement on an equal basis with others, including by: a. Ensuring that persons with disabilities have the right to a nationality and the right to change it, and are not deprived of their nationality arbitrarily on the basis of disability; b. Ensuring that persons with disabilities are not deprived on the basis of disability of their ability to possess and utilise documentation of their nationality or other documentation of identification that may be needed to facilitate exercise of the right to liberty of movement; c. Ensuring the accessibility to persons with disabilities of any processes relevant to the enjoyment of the right to liberty of movement, such as immigration proceedings, including through the removal of physical and communication barriers and the provision of reasonable accommodation; d. Ensuring that persons with disabilities have the right to leave any country, including their own; e. Facilitating the freedom of movement of persons with disabilities in the manner and at the time of their choice, and at affordable cost. UN Enable— Ad Hoc Committee, ‘Sixth Session: Contributions by Governments: Kenya’, available at: . 10 UN Enable—Ad Hoc Committee—Seventh Session—Contributions by Governments—Canada, available at: . 11 UN Enable—Ad Hoc Committee—Seventh Session—Vol. 8 No 4—Contributions by Nongovernmental Organizations—International Disability Caucus, available at: .
mute
Article 18
511
(b) Are not deprived, on the basis of disability, of their ability to possess and utilise documentation of their nationality or other documentation of identification, or to utilise relevant processes such as immigration proceedings, that may be needed to facilitate exercise of the right to liberty of movement; (c) Are free to leave any country, including their own.12
During the seventh session of the Ad Hoc Committee, Kenya, Canada, Japan, the Russian Federation, New Zealand, Qatar, Yemen, Argentina, Sudan, the Syrian Arab Republic, and Mexico made contributions relevant to the discussions on what became article 18. The Russian Federation successfully argued for the inclusion in the chapeau to paragraph 1, alongside the right to liberty of movement, of one’s right to choose their residence, for purposes of being consistent with article 12 of the International Covenant on Civil and Political Rights (ICCPR), which bundles the two rights.13 The effect of this inclusion is that choice of residence for persons with disabilities in the CRPD is dealt with both in article 18 as well as in article 19, with the latter requiring states to ensure that persons with disabilities have the opportunity to choose their place of residence as well as where and with whom they live on an equal basis with others.14 New Zealand also successfully proposed the replacement in the chapeau of the phrase ‘take effective measures’ with the term ‘recognize’, explaining that this would emphasize the right rather than the state conduct.15 The IDC, whose particular interest in this regard was fortified by the difficulties its members faced even while travelling to attend sessions of the Ad Hoc Committee,16 backed New Zealand’s proposal.17 Debate also arose about the link between the right to liberty of movement on the one hand and the right to a nationality on the other, which in other core human rights conventions are addressed in separate articles.18 It was, however, pointed out that movement and nationality have key common ingredients that, therefore, may be conveniently dealt with together: for example their mutual focus on relevant processes such as immigration proceedings. As Kenya noted, when one is not provided with documentation of travel, one’s movement is thereby limited.19 The IDC also successfully proposed that the right to acquire nationality should be extended to include the right to change nationality.20
Seventh Session, New York, 16–27 January 2006, letter dated 7 October 2005 from the Chairman to all members of the Committee. Annex I. Draft Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, available at: . 13 UN Enable—Seventh Session of the Ad Hoc Committee—Daily Summary of Discussions—Vol 8 No 4—19 January 2006, available at: . 14 Art 19(a) CRPD. 15 UN Enable—Seventh Session of the Ad Hoc Committee—Daily Summary of Discussions—Vol 8 No 4—19 January 2006, available at: . 16 Schulze (n 6). 17 Chairman’s Text as amended by the International Disability Caucus, available at: . 18 The ICCPR as indeed the International Convention on the Protection of All Migrant Workers and Members of their Families deal with the liberty of movement in Arts 12 and 39 respectively, while the right to a nationality is addressed in Arts 24 and 29 respectively. 19 UN Enable—Seventh Session of the Ad Hoc Committee—Daily Summary of Discussions Vol 8 No 4—19 January 2006, available at: . 20 Chairman’s Text as amended by the International Disability Caucus, available at: . 12
mute
512
Liberty of Movement and Nationality
Twin concerns were addressed with regard to the equal exercise of rights: that a lesser standard on liberty of movement and nationality should not be legislated in respect of persons with disabilities; and that ‘extra’ rights should not be assigned to persons with disabilities over and above other individuals. A notable concern here was whether prohibited deprivation of nationality related to original or acquired nationality (Qatar, Yemen). The agreed fundamental was that this provision would not impeach domestic legislation, save to the extent that such legislation might provide for unequal treatment of persons with disabilities.21 A further concern was whether article 18, paragraph 1 (b), of the abbreviated text should be aligned with article 12, paragraph 3, of the ICCPR, which subjected the liberty of movement to limitations such as the protection of national security (Canada, Japan, New Zealand, Argentina, Mexico). It was agreed that the draft article’s provisions reflected commitments made in similar provisions in other human rights instruments and it was not necessary to set out the restrictions more specifically since the liberty of movement for persons with disabilities would be exercisable by persons with disabilities on an equal basis with others.22 The negotiations noted that a clear distinction should be made between liberty of movement which guarantees individuals the rights inter alia to move freely within the borders of their state, and personal mobility which focuses on facilitating the mobility of persons with disabilities through quality mobility aids, devices, assistive technologies, and forms of live assistance and intermediaries. The chapeau of the article on personal mobility in early drafts of the Convention was framed as follows: ‘States parties to this Convention shall take effective measures to ensure liberty of movement with the greatest possible independence for persons with disabilities . . .’.23 That language was revised into its present formulation in article 20 CRPD which does not address liberty of movement, specifically requiring states to: ‘. . . take effective measures to ensure personal mobility with the greatest possible independence for persons with disabilities . . .’. That draft article had also included a requirement for states parties to facilitate: ‘. . . the freedom of movement of persons with disabilities in the manner and at the time of their choice, and at affordable cost’. At the time, it was noted that the draft article’s title of ‘personal mobility’ aimed to distinguish it from the broader right to liberty of movement established in article 12 ICCPR. Personal mobility was a term of art focusing on persons with disabilities and the technologies that enable them to move, while liberty of movement was a broader concept set out in the ICCPR.24 Finally, the IDC proposed that persons with disabilities should have the right to enter a country, its proposed language being that persons with disabilities: ‘enjoy on an equal basis with others the right to enter and immigrate to a country other than their state of
21 UN Enable—Seventh Session of the Ad Hoc Committee—Daily Summary of Discussions—Vol 8 No 4—19 January 2006, available at: . 22 UN Enable—Seventh Session of the Ad Hoc Committee—Daily Summary of Discussions—19 January 2006, available at: . 23 Art 20 of Draft Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities. Final text compiled as adopted UN Doc A/AC265/2004/ WG/1 CRP 4 (27 January 2004) and UN Docs CRP 4/Add 1, Add 2, Add 4, and Add 5 (27 January 2004). 24 UN Enable—Sixth Session of the Ad Hoc Committee—Daily Summary of Discussions—Vol 7 No 5–5 August 2005, available at: .
mute
Article 18
513
origin’,25 to ensure there was an obligation to treat persons with disabilities equally in regard to entry and immigration into a country. The final framing of what is now paragraph 1(d) of article 18 was consequently revised to conform to the international standard that while a state may determine who may enter its territory, such determination should neither be arbitrary nor based on one’s disability. But, as we show in the next section of this chapter, the failure to include IDC’s specific proposal on the right to emigrate perhaps unwittingly offered states the option to restrict emigrants with disabilities from entering their countries.
3. Paragraph 1 3.1 Chapeau of Paragraph 1 3.1.1 ‘right of persons with disabilities to liberty of movement . . . freedom to choose their residence and to a nationality’ Article 18, paragraph 1, of the CRPD requires states parties to recognize the rights of persons with disabilities to liberty of movement, and freedom to choose their residence and nationality, on an equal basis with others. The full purport of this chapeau and indeed the whole of article 18 may be understood better by recalling the liberty of movement and right to nationality provisions in predecessor human rights instruments. Article 18 is a combination of two rights initially recognized in the Universal Declaration of Human Rights (UDHR).26 Firstly, article 13 of the UDHR affirmed everyone’s right to freedom of movement and residence within the borders of each state. In addition, it affirmed the universal entitlement to leave any country and the right to return to one’s country. Secondly, article 15 of the UDHR established everyone’s right to a nationality as well as to protection from arbitrary deprivation of nationality and or denial to change one’s nationality. These rights were consequently codified in the core human rights treaties, notably the International Convention on the Elimination of all Forms of Racial Discrimination (ICERD);27 ICCPR;28 the Convention on Elimination of all Forms of Discrimination against Women (CEDAW);29 the Convention on the Rights of the Child (CRC);30 and the International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families (CMW).31 Article 12 ICCPR qualified the broad declarative provisions on the right to freedom of movement and residence framed in article 13 UDHR. While under the UDHR everyone had the right to liberty of movement and freedom to choose their residence in a territory, and while everyone too was free to leave any country, including their own, these guarantees were restricted by a panoply of permissible limitations under the ICCPR. Firstly, under paragraph 1 of article 12, the right to liberty of movement in a territory was 25 Chairman’s Text as amended by the International Disability Caucus, available at: . 26 The Universal Declaration of Human Rights, UNGA Res 217 (10 December 1948). See generally Colin Harvey, Robert P Barnidge, ‘Human Rights, Freedom of Movement and the Right to Leave in International Law’ (2007) 19 IJRL 1. 27 Art 5(d)(i) and (ii) (movement); and (iii) (nationality) ICERD. 28 Arts 12 (movement) and 24 (nationality) ICCPR. 29 30 Arts 15(4) (movement) and 9 (nationality) CEDAW. Art 7 CRC. 31 Arts 39 (movement) and 29 (nationality) CMW.
mute
514
Liberty of Movement and Nationality
conditioned on a person being in that territory lawfully. Secondly, article 12, paragraph 3, of the ICCPR provided that those rights could be subjected to restrictions consistent with other ICCPR rights as provided by law necessary to protect national security, public order, public health or morals, or the rights and freedoms of others.32
3.1.2 Liberty of Movement and Residence The rights to liberty of movement and to one’s freedom to choose their residence were, therefore, well established in international human rights instruments. The patently existing gap in this regard was the applicability of these rights to persons with disabilities. International instruments were quite often used to justify the discrimination of persons with disabilities predicated on considerations such as public security, public order, or public health.33 As such, countries around the world have continued to prohibit or restrict persons with disabilities from moving within their borders or leaving or returning on spurious grounds. Illustratively: 1. Foreigners desiring to settle in Paraguay temporarily or permanently may be impeded from entering the country on account of physical or mental disability or a chronic disease ‘. . . such that they cannot practice their profession, occupation, trade or craft’.34 2. Foreigners with mental disabilities ‘. . . who are void of the capacity to make decisions on their own and have no person to assist their sojourn . . .’ are prohibited from entering Korea.35 3. El Salvador subjects the freedom to enter, stay in or leave the country to legal limitations in the case of persons without legal capacity. Permission for persons without legal capacity—who are referred to as ‘incompetent persons’—to acquire passports is given by a designated official in the Directorate-General for Migration. Persons with physical disabilities too are required to use a special passport application procedure.36 4. The spectre of persons with disabilities being processed in exclusive spaces is also apparent in Qatar where the Interior Ministry designates separate spaces for the processing of services such as issuance and renewal of passports and identity cards.37
Also see Art 39(2) CMW. Even the UN Human Rights Committee on occasion used these sorts of limitations with adverse consequences for the full enjoyment of rights by persons with disabilities. In its comments on art 25 ICCPR, it has stated as follows: 32 33
Any conditions which apply to the exercise of the rights protected by article 25 should be based on objective and reasonable criteria. . . . The exercise of these rights by citizens may not be suspended or excluded except on grounds which are established by law and which are objective and reasonable. For example, established mental incapacity may be a ground for denying a person the right to vote or to hold office. HRCtee, ‘General Comment No 25: Article 25 (Participation in Public Affairs and the Right to Vote)’ UN Doc CCPR/C/21/Rev 1/Add 7 (12 July 1996) para 4. 34 Art 6(3) of Act No 978/96. Cited in ‘Implementation of the CRPD: Initial Reports of Paraguay’ UN Doc CRPD/C/PRY/1 (29 June 2011) para 133. 35 Art 11 of the Immigration Control Act. Cited in ‘Implementation of the CRPD: Initial Report Submitted by Korea’ UN Doc CRPD/C/KOR/1 (27 February 2013) para 83. Korea has explained this as a measure for making those who invite persons with mental disabilities to guarantee their safety. 36 ‘Implementation of the CRPD: Initial Report Submitted by El Salvador’ UN Doc CRPD/C/SLV/1 (10 October 2011) paras 117–19. Incompetent persons include those with chronic or incurable mental illness (regardless of any lucid moments) and deafness (except where a deaf person can understand others and make themselves understood). 37 ‘Implementation of the CRPD: Initial Report Submitted by Qatar’ UN Doc CRPD/C/QAT/1 (9 July 2014) para 36.
mute
Article 18
515
5 . In Uganda, persons of unsound mind are prohibited from acquiring dual citizenship.38 6. Uruguay’s Constitution provides that under no circumstances shall admission into the country be granted to ‘. . . immigrants with physical, mental or moral defects that could be harmful to society’. At the same time, the grounds on the basis of which citizenship is suspended include physical or mental incompetence that prevents the free and reasoned exercise of citizenship.39 This is the context within which the chapeau of article 18(1) should be understood. By using the equality with others standard in its articulation of the rights to liberty of movement, freedom to choose one’s residence and nationality for persons with disabilities, article 18 recognizes that these rights are necessarily bound by the limitations applicable to all persons established in the ICCPR.40 At the same time, persons with disabilities may not be stopped from cross-border immigration on the sole basis of disability. They may have as good reason as others to flee their countries of origin as refugees on account of persecution or as immigrants, and they are only bound by the limitations applicable to other persons established for refugees and immigrants.41 In the above regard, the recommendations which the Committee on the Rights of Persons with Disabilities (Committee) has made to states in relation to measures taken to give effect to article 18 in fulfilment of article 35 of the Convention42 are illuminating.43 The Committee has made its displeasure known about states which discriminate non- nationals, whether refugees or migrants, on the sole basis of disability. It has raised concerns about the restriction from basic disability services for migrants with disabilities (Republic of Korea),44 and the unequal access to and choice of available social services and support for migrants with disabilities (Germany),45 in consequence of which non-nationals with disabilities are restricted from accessing community inclusion services (Dominican Republic).46 The Committee’s recommendations in all these instances have focused on ensuring that all non-nationals are treated on the basis of equality. It has stressed: 1. That detention and deportation centres should be made accessible to migrant workers with disabilities and that they should be provided with reasonable accommodation; 38 ‘Implementation of the CRPD: Initial Report Submitted by Uganda’ UN Doc CRPD/C/UGA/1 (10 March 2015) para 137. 39 Arts 37 and 80 of the Uruguay Constitution. Cited in ‘Implementation of the CRPD: Initial Report Submitted by Uruguay’ UN Doc CRPD/C/URY/1 (8 July 2015) para 293. 40 Response by Chairman of Ad Hoc Committee, UN Enable—Sixth Session of the Ad Hoc Committee— Daily Summary of Discussions—Vol 7 No 5–5 August 2005), available at: . 41 For a general explanation of these two phenomena, see Ilias Bantekas and Lutz Oette, International Human Rights Law and Practice (2nd edn, CUP 2016) 822–26. 42 Art 35 CRPD requires states parties to submit to the Committee comprehensive reports of the measures taken to give effect to its obligations under the Convention. 43 While, as O’Flaherty & Fisher point out, it is true that concluding observations by treaty-body committees are non-binding and flexible and hence not necessarily useful indicators of what committees consider matters of obligation, expressions of concern or specific recommendations provide pointers on current understandings on norm-application—Michael O’Flaherty and John Fisher, ‘Sexual Orientation, Gender Identity and International Human Rights Law: Contextualising the Yogyakarta Principles’ (2008) 8 HRLR 207–48. 44 CRPD Committee, ‘Concluding Observations on the Initial Report of the Republic of Korea’ UN Doc CRPD/C/KOR/CO/1 (29 October 2014) para 35. 45 CRPD Committee, ‘Concluding Observations on the Initial Report of Germany’ UN Doc CRPD/C/ DEU/CO/1 (13 May 2015) para 39. 46 CRPD Committee, ‘Concluding Observations on the Initial Report of the Dominican Republic’ UN Doc CRPD/C/DOM/CO/1 (8 May 2015) para 36.
mute
516
Liberty of Movement and Nationality
2. That disability should be mainstreamed in all migration policies, and persons with disabilities should be permitted free movement across state borders on an equal basis with others; 3. That all persons with disabilities should benefit from available services and entitlements, including those from different nationalities; and 4. That all policies and programmes for migrant populations should be fully accessible for persons with disabilities.47
3.1.3 Interlinkages with Other Rights A close nexus exists for persons with disabilities between the exercise of liberty of movement and that of other rights. The recognition of legal capacity is inextricably linked to the enjoyment of many other human rights, including the right to liberty of movement and nationality.48 Addressing the question of how the concept of universal design supports accessibility, the Committee introduces liberty of movement issues by noting as follows: The strict application of universal design to all new goods, products, facilities, technologies, and services should ensure full, equal, and unrestricted access for all potential consumers, including persons with disabilities, in a way that takes full account of their inherent dignity and diversity. It should contribute to the creation of an unrestricted chain of movement for an individual from one space to another, including movement inside particular spaces, with no barriers. Persons with disabilities and other users should be able to move in barrier-free streets, enter accessible low-floor vehicles, access information and communication, and enter and move inside universally designed buildings, using technical aids and live assistance where necessary. . . .49
The Committee further states that: Article 9, paragraph 2, stipulates the measures states Parties must take in order to develop, promulgate and monitor the implementation of minimum national standards for the accessibility of facilities and services open or provided to the public. These standards shall be in accordance with other states parties’ standards to ensure their interoperability with regard to the free movement within the framework of the liberty of movement and nationality (article 18) of persons with disabilities.50
More generally, the right to liberty of movement is also linked intrinsically with other civil and political as well as economic, social and cultural rights. Writing about article 12 of the ICCPR, Quinn and Degener have in this regard noted as follows: . . . The right to liberty of movement (article 12) includes the right to move around freely within a State and freedom to choose one’s residence. To implement this human right for their disabled citizens, States Parties may need to reconsider their public transportation and housing policies. The provision of such transport is not an ICCPR but an ICESCR issue. It highlights the interdependence and indivisibility of the two sets of rights, especially in the disability context.51
See above concluding observations from Dominican Republic, Germany, and Republic of Korea. CRPD Committee, ‘General Comment No 1 (2014, Article 12: Equal Recognition Before the Law’ UN Doc CRPD/C/GC/1 (19 May 2014) para 31. 49 CRPD Committee, ‘General Comment No 2 (2014) Article 9: Accessibility’ UN Doc CRPD/C/GC/2 (22 May 2014) para 15. 50 ibid para 18. 51 Gerard Quinn, Theresia Degener, ‘Building Bridges From “Soft Law” to “Hard Law”: The Relevance of the United Nations Human Rights Instruments to Disability’ in Gerard Quinn and Theresia Degener (eds), Human Rights and Disability: The Current Use and Future Potential of United Nations Human Rights Instruments (United Nations 2002) 47–50. 47 48
mute
Article 18
517
The Committee on Economic, Social and Cultural Rights has, for example, stated that the right to attain the highest standard of health may not be realized fully if an individual’s liberty of movement is curtailed, thereby impeding her from seeking medical attention.52 Hence, a state which uses public health to justify limiting an individual’s liberty of movement: ‘. . . has the burden of justifying such serious measures . . . (which must accord) with the law, including international human rights standards, compatible with the nature of the rights protected by the Covenant, in the interest of legitimate aims pursued, and strictly necessary for the promotion of the general welfare in a democratic society’.53 Similarly, the UN Human Rights Committee has found that restrictions to the liberty of movement may prevent persons entitled to vote from exercising that right effectively.54 The discrimination and disempowerment of persons with disabilities bears a close nexus with situations faced by women particularly in the past where their legal capacity was withheld in not too dissimilar fashion as that of persons with disabilities. Manifestations of restricted liberty of movement for women were identified to include: . . . the exercise of marital powers over the wife or of parental powers over adult daughters; legal or de facto requirements which prevent women from travelling, such as the requirement of consent of a third party to the issuance of a passport or other type of travel documents to an adult woman.55
The right to choose one’s own residence is as much an economic, social, and cultural right as it is a civil and political right. This interconnection is quite apparent in the way the Convention dovetails its article 18 provisions on the freedom to choose one’s residence with its article 19 provisions on living independently and being included in the community. In particular, article 19 (a) of the CRPD infers that freedom of residence may not be fully realized for a person with disability when states do not ensure that: ‘persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others’.56 The Committee notes that this article 19 (a) provision is a civil and political right which is hence applicable immediately as opposed to progressively.57 Yet still the full enjoyment of the right to freedom of residence is closely interconnected with economic, social and cultural rights and, as an example, the right to adequate housing may not be realized and maintained by all groups in society without full enjoyment of the right to freedom of residence.
52 CESCR, ‘General Comment No 14: The Right to the Highest attainable Standard of Health’ UN DOC E/C.12/2000/4 (11 August 2000) para 3. 53 ibid para 28. 54 UN HRCtee, ‘General Comment No 25: Article 25 (Participation in Public Affairs and the Right to Vote)’ UN Doc CCPR/C/21/Rev 1/Add 7 (12 July 1996) para 12. Also see CEDAW Ctee, ‘General Recommendation No 23: Political and Public Life’ UN Doc A/52/38 (13 January 1997) para 20. 55 UN HRCtee, ‘General Comment No 28: Article 3 (The Equality of Rights Between Men and Women)’ UN Doc CCPR/C/21/Rev 1 Add 10 (29 March 2000) para 16. 56 Art 19(a) CRPD. 57 CRPD Committee, ‘General Comment No 5 on Article 19: Living Independently and Being Included in the Community’ UN Doc CRPD/C/18/1 (29 August 2017) para 39.
mute
518
Liberty of Movement and Nationality
3.1.4 Movement within the Borders of a Country While the chapeau of article 18 requires states parties to recognize the rights of persons with disabilities to liberty of movement, it does not make explicit reference to the right of persons with disabilities to movement within the borders of a country.58 This lacuna exists despite the fact that Mexico unsuccessfully proposed appropriate language to fill that gap. Its suggestion was that the right of a person with disability to leave any country including their own should include the right to freedom of movement within one’s own country.59 In consequence of this failure, inference has to be made regarding the liberty of movement for persons with disabilities within the borders of a country. While persons with disabilities may seek redress in terms of other Convention rights, it is still significant as examples therefore that persons confined to institutions60 or commuters who are refused embarkation onto public transport61 because of their disabilities may not have a direct remedy as regards the violation of their right to move freely in their country.62 In this respect, the Human Rights Committee has established three essentials that resonate in respect of disability too. Firstly, the right to move freely relates to the entire territory of a state, including all parts of federal states. Secondly, the entitlement of a person to move from one place to another and to establish themselves in a place of their choice must not be made dependent on any particular purpose or reason. Thirdly, these rights are protected both from public as well as private interference.63 The UN Human Rights Committee illustrates this final point by stating as follows: In the case of women, this obligation to protect is particularly pertinent. For example, it is incompatible with article 12, paragraph 1, that the right of a woman to move freely and to choose her residence be made subject, by law or practice, to the decision of another person, including a relative.64
58 eg compare Art 18 CRPD with Art 39 CMW which provides that: ‘migrant workers and members of their families shall have the right to liberty of movement in the territory of the State of employment and freedom to choose their residence there’. 59 UN Enable—Seventh Session of the Ad Hoc Committee—Daily Summary of Discussions—Vol 8 No 4—19 January 2006, available at: . 60 eg see Human Rights Watch, ‘Like a Death Sentence: Abuses Against Persons with Mental Disabilities in Ghana’ (2 October 2012). 61 See Njoki Chege, ‘Disabled Medic Claims She was Kicked Out of Plane’ Daily Nation (5 May 2016), available at: . 62 Hence, in Republic v Cabinet Secretary for Transport & Infrastructure Principle Secretary & 5 Others ex parte Kenya Country Bus Owners Association & 8 Others [2014] eKLR (available at: ) an application for judicial review succeeded against Kenya’s National Safety and Transport Authority which had sought to introduce a regulation removing roof carriers from public transport vehicles. The High Court agreed with the applicant that outlawing the use of roof carriers would discriminate persons with mobility impairments who needed to use their wheelchairs since public transport vehicles would thereby not have the facilities to secure the wheelchairs in transit. Significantly, the pleadings in this application focused on violation of the rights to human dignity (Art 28 of the Constitution of Kenya 2010) and to reasonable access to all places, public transport, and information (Art 54 (1) (c) of the Constitution). The right to liberty of movement in the Constitution received no specific attention. 63 UN HRCtee, ‘General Comment No 27: Article 12 (Freedom of Movement) UN Doc CCPR/C/21/Rev 1/Add 9 (2 November 1999) paras 5–6. 64 ibid para 6.
mute
Article 18
519
3.1.5 Freedom of Choice of Travel It is relevant to address the question of travel further. The spectre of airlines refusing to board passengers with disabilities is common: from a pilot in the United States who made an emergency stop to disembark passengers who were travelling with their daughter who is autistic;65 to a passenger in Canada who was refused travel because of his oversize wheel- chair.66 The International Civil Aviation Organization (ICAO) has made post-CRPD revisions to its regulations to ensure that passengers with disabilities have equivalent access to air travel. Issues covered in ICAO’s guidance include reservations, check-in, immigration and customs, security clearances, transfers within airports, embarkation and disembarkation, departure, carriage, and arrival.67 In Jeeja Ghosh & Another v Union of India & Others,68 a petitioner with cerebral palsy sought relief from the Supreme Court of India, alleging violation of her right to liberty of movement. The petitioner had been ordered despite her protestations to disembark her flight from Calcutta to Goa, with the plane’s captain having insisted that she be removed because of her disability. The petitioner argued that Indian regulations on the carriage by air of passengers with disabilities69 in fact established clear protocols under which it was illegal for crew to behave as they had. One regulation specifically provided that an airline shall not refuse to carry persons with disabilities or persons with reduced mobility and their assistive aids/devices, escorts, and guide dogs, including their presence in the cabin, provided those persons or their representatives had at the time of booking and/or check- in for travel informed the airline of their requirements. The respondent argued that the petitioner had not informed the airline about her disability and the airline could not risk her on a five-hour flight when she was unescorted. In response, the petitioner stated that the provision at issue covered two scenarios: persons with disabilities and persons with disabilities requiring assistive devices or aids. The petitioner did not fall in the second category and hence did not need to notify the airline for any special arrangements to be made. She sought the only assistance she needed at the security check-in—to carry her baggage. The Supreme Court found that the petitioner had not been given ‘. . . appropriate, fair and caring treatment . . .’ and that the decision to de-board her was uncalled 65 Nicholas Reilly, ‘Pilot “Refused to Fly Plane with their Daughter on board” ’ Metro (10 May 2015), available at: . 66 Nicole Thompson, ‘Disabled Passenger Claims Air Canada Denied Him Access to Flight due to Oversize Wheelchair’ Global News (August 3 2016), available at: . 67 ICAO, ‘Manual on Access to Air Transport by Persons with Disabilities’ ICAO Doc 9984 (2013) para 1.1; see also International Air Transport Association, IOSA Standards Manual, INT 1 (8th edn, International Air Transport Association 2014); Airports Council International, Airports & Persons with Disabilities: A Handbook for Airport Operators 2 (4th edn, Airports Council International 2003). 68 Jeeja Ghosh & ANR v Union of India & Others Indian Supreme Court judgment (12 May 2016); see also Stott v Thomas Cook Tour Operators Ltd [2014] UKSC 15, where the absence of reasonable accommodation for a disabled airline passenger was found to amount to discrimination. 69 Government of India, Office of the Director-General of Civil Aviation, Civil Aviation Requirements Section 3—Air Transport Series ‘M’ Part I Issue 2, 1 May 2008 (CAR 2008) on ‘Carriage by Air of Persons with Disability and/or Persons with Reduced Mobility’; see also Michael J McCarthy, ‘Improving the United States Airline Industry’s Capacity to Provide Safe and Dignified Services to Travelers with Disabilities: Focus Group Findings’ (2001) 33 Disabil Rehabil 2612; Yaniv Poria, Arie Reichel, and Yael Brandt, ‘The Flight Experiences of People with Disabilities: An Exploratory Study’ (2010) 49 J Travel Res 216; Michael A Schwartz, ‘Propelling Aviation to New Heights: Accessibility to In-flight Entertainment for Deaf and Hard Hearing Passengers’ (2012) 77 J Air L & Com 151.
mute
520
Liberty of Movement and Nationality
for. While a decision could have been taken to de-board a passenger in the larger interest and safety of other passengers, the airline did not make due deliberation or indeed even consult experts or the petitioner before de-boarding her. The Supreme Court ultimately ruled that disabled persons must enjoy the same rights as all others, including freedom of travel and movement. European Union legislation has established bases for ensuring that persons with disabilities and those with reduced mobility are not refused transport on the ground of disability. Carriers and other relevant service providers are required to provide persons with disabilities opportunities for air travel comparable to that of other persons travelling to or from European Union destinations. Necessary assistance should be provided on board aircraft as well as at the airport, and necessary staff and equipment should be deployed at no extra cost to commuters with disabilities.70
3.2 Paragraph 1(a): Have the Right to Acquire and Change a Nationality and [to] not [Be] Deprived of . . . Nationality Arbitrarily or on the Basis of Disability Citing the International Court of Justice’s judgment in the Nottebohn case, Alice Edwards explains that nationality is determined by one’s social ties to the country of their nationality which consequently gives rise to rights and duties on the state’s part too.71 Nationality is acquired or conferred by a state to an individual who is born on the territory of that state ( jus soli—law of the soil); or it may be acquired by descent (jus sanguinis—law of the blood); or by naturalization such as following long residence (jus domicili).72 This paragraph is more expansive than similar treaty formulations such as in the ICCPR, which rather laconically provides that: ‘Every child has the right to acquire a nationality.’73 The ICCPR also does not establish the right to change one’s nationality or provide protection from deprivation of nationality.74 Concerns that limitations to the right to a nationality could be applied unfairly to restrict the rights of persons with disabilities may have spurred the Ad Hoc Committee not to burden that right with the sort of restrictions common to other core human rights instruments. Notably, the CRC provides that implementation of a child’s right to acquire a nationality shall be ensured by states parties: ‘. . . in accordance with their national law and their obligations under the relevant international instruments in this field, in particular where the child would otherwise be stateless’.75 70 Such as Regulation (EC) No 1107/2006 of the European Parliament and of the Council of 5 July 2006 Concerning the Rights of Disabled Persons and Persons with Reduced Mobility When Travelling by Air. 71 Alice Edwards, ‘The Meaning of Nationality in International Law in an Era of Human Rights: Procedural and Substantive Aspects’ in Alice Edwards and Laura Van Waas (eds), Nationality and Statelessness Under International Law (CUP 2014) 12–13. 72 Edwards, ‘The Meaning of Nationality’ (n 71) 16; Alexander Aleinikoff, ‘Between Principles and Politics: U.S. Citizenship Policy, in Alexander Aleinikoff et al (eds), From Migrants to Citizens. Membership in a Changing World (Brookings Institute Press 2000); Jeffrey L Blackman, ‘State Succession and Statelessness: The Emerging Right to an Effective Nationality under International Law’ (1998) 19 Mich JIL 1141; Ian Brownlie, ‘The Relations of Nationality in Public International Law’ (1963) 39 BYBIL 284; Haro F Van Panhuys, The Role of Nationality in International Law (Sijthoff 1959). 73 Art 24(3) ICCPR. 74 The ICJ had ruled in the Nottebohm case that although states are free to confer their nationality on any person, the legal effects of such conferral were to be assessed only by reference to international law; Nottebohm (Liechtenstein v Guatemala) [1955] ICJ Rep 4. 75 Art 7(2) CRC.
mute
Article 18
521
Paragraph 1 (a) establishes or reaffirms that persons with disabilities, as indeed all other individuals, have the right to acquire a nationality and change their nationality. This means that a state may not bar a person from acquiring or changing nationality on the sole basis of disability. Where nationality is conferred by birth, the failure to register children with disabilities denies them evidence of nationality and this can have long-term impacts on these children whose nationality may be questioned as they grow into adulthood. At the same time, some states have nationality restrictions that discourage or bar applicants for nationality who have disabilities. This for example is the case in Uganda, which has a legal bar of dual citizenship for persons with psychosocial and/or intellectual disabilities76 and Ecuador, which denies nationality to persons with a ‘chronic illness’.77 Regarding these denials, the Committee called for the repeal of laws that restrict the acquisition of citizenship by persons with disabilities, and the repeal of laws restricting persons with disabilities from applying for citizenship on an equal basis with others.78 The right to a nationality is doubly important for persons with disabilities since it establishes the legal relationship of rights and obligations between the person and the state. Its limitation undermines the full exercise of rights by persons with disabilities and amounts to discrimination. As the CEDAW Committee has noted in respect of women, nationality is critical to full participation in society, should be capable of change by an adult woman and should not be arbitrarily removed because of marriage or dissolution of marriage or because one’s husband or father changes their nationality.79 This position clearly applies to women with disabilities too. The right not to be deprived of one’s nationality is not only a consequence of the right to a nationality and the obligation on states not to impose or facilitate situations of statelessness,80 but is also nothing short of anathema in international relations. Statelessness leads to refugee and migrant flows and hence disturbs international peace and security. The general rule in international law is that a denial or stripping of one’s nationality is prohibited, save for persons with dual nationality or naturalized aliens who obtained their new nationality through fraudulent means.81 The denial of nationality on any other grounds, including disability, will amount to persecution and the victim will be entitled to asylum as a refugee. This right includes the right not to lose or be deprived of one’s nationality on the sole basis of disability. Indeed, the arbitrary or discriminatory deprivation of nationality on bases such as race, ethnicity, religion, or political views are not permitted under international law.82
76 CRPD Committee, ‘Concluding Observations on the Initial Report of Uganda’ UN Doc CRPD/C/ UGA/CO/1 (12 May 2016) para 36. 77 CRPD Committee, ‘Concluding Observations on the Initial Report of Ecuador’ UN Doc CRPD/C/ ECU/CO/1 (27 October 2014) para 32. 78 See above concluding observations for Uganda and Ecuador. The Committee saw chronic illness as a condition closely linked to disability and hence discriminatory and contrary to Art 18 of the CRPD. 79 CEDAW Ctee, ‘General Recommendation No 21: Equality in Marriage and Family Relations’ UN Doc A/47/38 (4 February 1994) para 6. 80 See the 1954 Convention relating to the status of Stateless Persons and the 1961 Convention on the Reduction of Statelessness. 81 See Alice Edwards and Laura Van Waas, Nationality Matters: Statelessness under International Law (CUP 2014); Paul Weis, Nationality and Statelessness in International Law (2nd edn, Kluwer 1979); David Weisbrodt and Clay Collins, ‘The Human Rights of Stateless Persons’ (2006) 28 Human Rights Quarterly 245. 82 Alice Edwards (n 71) 23.
mute
522
Liberty of Movement and Nationality
3.3 Paragraph 1(b) This paragraph covers two aspects of relevance to persons with disabilities: firstly, the deprivation of their ability to obtain, possess, and utilise documents of identity; and, secondly, the ability to utilize processes such as immigration proceedings to facilitate their exercise of the liberty of movement. Regarding the first issue, the reference to ‘documentation of . . . nationality or other documentation of identification’ is understood broadly to include a passport or any other document of identification used in a particular country.83 This means that persons with disabilities have the right to a birth certificate and national identification documents, including passports. Here, it should be pointed out that although many states have resorted to specific identification cards for persons with disabilities, this paragraph does not make any such demand and indeed such cards may not be issued in substitution of nationality documents used by the general population. Yet where disability cards are issued, the Committee has raised concern about the exclusion of non-citizens with disabilities from acquisition of those cards (Thailand).84 This paragraph recognizes that states have through acts of commission or omission hindered persons with disabilities from obtaining, possessing, or utilizing documents of nationality. The phrase ‘ability to obtain’ is quite significant. Deprivation of that ability may firstly be direct, for example where persons are denied such documents because of their disability, or secondly it may be indirect, such as where issuing offices are located in places that are inaccessible to persons with disabilities. In the former instance, states have used legislative or administrative instruments to restrict free acquisition and use of nationality documents by persons with disabilities. In the latter instance, states have failed to calibrate their infrastructure to accommodate persons with disabilities seeking documents of nationality. Concerns raised by the CRPD Committee in this regard have included the absence of reasonable accommodations for persons with disabilities in deportation centres (United Arab Emirates,85 Qatar)86 and the inaccessibility of migration decision procedures for persons with disabilities, as well as the absence of information and communication in accessible formats (Slovakia).87 The Committee’s recommendations called for detention and deportation centres to be made accessible to migrant workers with disabilities who should also be provided with reasonable accommodation. Regarding the second aspect covered by the paragraph, protection of the right of persons with disabilities not to be deprived of the use of relevant immigration proceedings that may be needed to facilitate exercise of the right to liberty of movement responds to situations where states have used immigration proceedings, either indirectly or directly, to stop persons from crossing their borders on the sole basis of disability, and where states have not put in place accommodations to enable persons with disabilities to use Inference from a concern raised by Japan during the Seventh Session of the Ad Hoc Committee (n 13). CRPD Committee, ‘Concluding Observations of Initial Report of Thailand’ UN Doc CRPD/C/THA/ CO/1 (12 May 2016) para 37. 85 CRPD Committee, ‘Concluding Observations on the Initial Report of the United Arab Emirates’ UN Doc CRPD/C/ARE/CO/1 (3 October 2016) para 35 (a). 86 CRPD Committee, ‘Concluding Observations on the Initial Report of Qatar’ UN Doc CRPD/C/QAT/ CO/1 (2 October 2015) para 35. 87 CRPD Committee, ‘Concluding Observations on the Initial Report of Slovakia’ UN Doc CRPD/C/ SVK/CO/1 (17 May 2016) para 53. 83 84
mute
Article 18
523
immigration processes. Indirect denials of entry have taken forms such as language proficiency testing or knowledge testing devoid of reasonable accommodations and financial requirements (19) which may not be readily realizable by migrants with disabilities. Migrants and refugees with disabilities have routinely faced more direct forms of denial when they have been refused entry into states on the basis of the apparent costs associated with such persons’ disabilities. Illustratively, section 38 (1) (a) of the Canadian Immigration and Refugee Protection Act88 provides that a foreign national may not be admitted to Canada on health grounds if their health condition might reasonably be expected to cause excessive demand on health or social services. In consequence of this, non-Canadians can be refused entry into Canada if they might reasonably be expected to make excessive demands on health and social services. Migrants to Canada with various disabilities have been denied entry into the country, including individuals with developmental disabilities, intellectual disabilities, and physical disabilities.89 Canadian immigration policy seems to be guided by the notion of excessive demands under which potential immigrants must undergo physical and mental exams ‘. . . to prove that their bodies and minds will not be a burden on Canada’s socioeconomic structure’.90 Indeed, states such as the United Kingdom and Australia have entered reservations or made interpretive declarations on article 18 ostensibly to allow them leeway to have full control over which individuals may be allowed across their borders. To this end, the United Kingdom reserved to itself: ‘. . . the right to apply such legislation, insofar as it relates to the entry into, stay in and departure from the United Kingdom of those who do not have the right under the law of the United Kingdom to enter and remain in the United Kingdom, as it may deem necessary from time to time’.91 However, as Britain’s Equality and Human Rights Commission has explained, the United Kingdom’s reservation to article 18 may be incompatible with the principle of non-discrimination under article 5 of the CRPD and the basic purposes of the Convention. The Commission explained that article 18 in fact seeks to ensure that while exercising their immigration functions states do not discriminate against a person based on any disability; article 18 would not undermine the United Kingdom’s ability to regulate who and in what circumstances a person would gain citizenship.92 In its instance, Australia made the interpretive declaration of: ‘. . . its understanding that the Convention does not create a right for a person to enter or remain in a country of which he or she is not a national, nor impact on Australia’s health requirements for non-nationals seeking to enter or remain in Australia, where these requirements are based on legitimate, objective and reasonable criteria’.93 It would seem that this
Immigration and Refugee Protection Act, Sc 2001 c27, available at: . Carolyn Zaikowski, ‘Canada is a Progressive Immigration Dream Unless You Have a Disability’, Washington Post (February 5, 2017), available at: . 90 ibid citing Roy Hanes, available at: . 91 A list of reservations and objections thereto to the CRPD, along with a list of signatures and ratifications is available at: . 92 Memorandum submitted by the UK’s Equality and Human Rights Commission to the CRPD Joint Committee (4 January 2009) paras 3.8–3.9, available at: . 93 Australian reservation to CRPD. 88 89
mute
524
Liberty of Movement and Nationality
declaration94 has made Australia able to continue its legal approach under which emigrants with disabilities who hold certain types of visas have to wait for ten years before they are eligible for disability support pension.95 One other instance of reservation to article 18 should be highlighted here. Malaysia made a far more general reservation to articles 15 and 18 of the Convention, stating it considered itself not to be bound by those articles.96 Austria objected to this reservation, noting that both articles related to fundamental principles of the CRPD and their non-application by Malaysia would be contrary to the object and purpose of the Convention.97 Belgium’s objection went further, noting that the vagueness and general nature of the reservation may contribute to undermining the basis of international human rights treaties. Belgium cited article 46 (1) of the CRPD as well as article 19 (c) of the Vienna Convention on the Law of Treaties which codify the customary international law norm that reservations incompatible with the object and purpose of a Convention are not permitted.98 Other states that offered objections included Germany,99 Hungary,100 Portugal,101 Slovakia,102 and Sweden.103 Malaysia did not explain why it lodged its reservation to article 18, but perhaps Slovakia and Sweden attempted to second-guess the Malaysian position by noting in their objections that states should be prepared to undertake any legislative changes necessary for them to comply with their treaty obligations. It is indeed instructive that Thailand withdrew an interpretive declaration which had subjected the application of article 18 to its national laws, regulations, and practices.104 In light of the incompatibility of Malaysia’s article 18 reservation, and the dubious character of the reservation and declaration by the United Kingdom and Australia respectively, three possible consequences may be drawn.105 Firstly, is the question of whether the ratification remains valid excluding the reserved articles—what is referred to as the ‘surgical’ solution. This approach, however, would defeat the object and purpose of the CRPD and hence it is not tenable. The second option is where the instrument of reservation becomes invalid on account of its content’s incompatibility with the object and purpose of the CRPD—what is referred to as the ‘backclash’ solution. This approach would disregard the state party’s view on the matter totally and in effect force her to remain a party to the Convention, again, a possibly untenable situation. A third option concerns whether a reservation against article 18 becomes severed from the instrument of ratification, leaving the state a party to the CRPD without the reservation’s benefit—what is referred to as the ‘severability’ doctrine. This was the approach taken by the UN Human Rights Committee in its General Comment No 24.
94 National Ethnic Disability Alliance, ‘Refugees and Migrants with Disability and the United Nations Convention on the Rights of Persons with Disabilities’ (21 October 2008), available at: . 95 Also see item 4005, schedule 4, Public Interest Criteria and Related Provisions, Australia Migration Regulations 1994, made under the Migration Act of 1958. 96 Malaysian reservation to the CRPD. See for an in-depth analysis, commentary to Art 46 CRPD in this volume. 97 98 99 Austria 24 June 2011. Belgium 28 June 2011. Germany 3 August 2011. 100 101 102 Hungary 1 August 2011. Portugal 26 July 2011. Slovakia 18 July 2011. 103 Sweden 6 July 2011. 104 Thai reservation to CRPD. On 5 February 2015, Thailand informed the UN Secretary-General that it had withdrawn its Article 18 interpretive declaration. 105 Roslyn Moloney, ‘Incompatible Reservations to Human Rights Treaties: Severability and the Problem of State Consent’ (2004) 5 Melbourne JIL 155.
mute
Article 18
525
Clearly, a state may regulate who may enter its territory. Such regulation though must be by law and it must not discriminate immigrants on the basis they have a disability.106 Furthermore, once allowed entry, disability-based targeting must not be used to restrict exercise of rights. This is in line with the recognized norm that while aliens do not have the right to enter or reside in the territory of a state and while consent for entry may be granted subject to conditions relating to movement, residence, and employment, once they are allowed entry, aliens too are entitled to all fundamental rights and freedoms, subject to article 12 (3) ICCPR.107 The Committee has in this sense been concerned about the adversities occasioned by the setting of stricter entry requirements for persons with disabilities (Mexico)108 and the denial of entry of persons with disabilities on the ground of disability (Cook Islands),109 including persons with psychosocial disabilities who are not accompanied by an assistant (Republic of Korea).110 The Committee has also raised concerns regarding the barriers which persons with disabilities or families with members who are disabled face when moving to live or work in another state (European Union).111 The Committee has responded to this discrimination by stipulating that: persons with disabilities should be treated on an equal basis with others in the issuance of visas and entry permits; and that persons with disabilities and their families should be enabled to enjoy their right to freedom of movement on an equal basis with others, including with regard to the portability of social security benefits.112 Despite the continuing challenges, many positive developments in this area have been noted. Some states establish exemptions for persons with disabilities which may amount to reasonable accommodations for purposes of enabling them to leave or indeed return to a country. Qatar waives fees for persons with disabilities applying for passports,113 while Mauritius charges such applicants a concessionary fee.114 Bolivia entitles persons with serious disabilities a 50 per cent discount on public air or land transport,115 while Korea exempts foreigners with some autistic disorders or mental or intellectual disabilities whose father or mother is a Korean national from taking written tests in the 106 eg pursuant to HR 3734—Personal Responsibility and Work Opportunity Act of 1996, 104th Congress (available at: ) most non-US citizens were made ineligible for most forms of social benefits, a situation which therefore applied to all immigrants and did not target a particular category; see Kristen Hill Maher, ‘Who Has a Right to Rights? Citizenship’s Exclusions in an Age of Migration’ in Alison Brysk, Globalisation and Human Rights (University of California Press 2002) 21. 107 UN HRCtee, ‘General Comment No 15: The Position of Aliens under the Covenant’ UN Doc HRI/ GEN/1/Rev 9 Vol 1 (11 April 1986) paras 5–6 and 8. 108 CRPD Committee, ‘Concluding Observations on the Initial Report of Mexico’ UN Doc CRPD/C/ MEX/CO/1 (27 October 2014) para 39. 109 CRPD Committee, ‘Concluding Observations on the Initial Report of the Cook Islands’ UN Doc CRPD/C/COK/CO/1 (15 May 2015) para 37. 110 CRPD Committee, ‘Concluding Observations on the Initial Report of the Republic of Korea’ UN Doc CRPD/C/KOR/CO/1 (29 October 2014) para 35. 111 CRPD Committee, ‘Concluding Observations on the Initial Report of the European Union’ UN Doc CRPD/C/EU/CO/1 (2 October 2015) para 48. 112 ibid. 113 ‘Implementation of the CRPD: Initial Report Submitted by Qatar’ UN Doc CRPD/C/QAT/1 (9 July 2014) para 36. 114 ‘Implementation of the CRPD: Initial Report Submitted by Mauritius’ UN Doc CRPD/C/MUS/1 (11 August 2014) para 57. 115 Administrative Regulation TR-334/2010, issued by the Telecommunications and Transport Monitoring and Social Control Authority. Cited in ‘Implementation of the CRPD: Initial Report Submitted by Bolivia’ UN Doc CRPD/C/BOL/1 (28 September 2015) para 264.
mute
526
Liberty of Movement and Nationality
naturalization screening process.116 In Denmark, persons with disabilities may, in relation to the language requirement and the requirement to pass a nationality test, be given remedial instruction, granted exemption from the form or content of the tests, and allowed to use aids.117 Danes with disabilities can travel abroad for limited temporary stays with disability-compensating services, including aids, a disability car, allowances for additional expenses, and citizen-managed personal assistance, without prior application to their municipalities.118 In Germany, applicants for nationality with disabilities are covered by exceptional statutory regulations if their disabilities would make naturalization more difficult or impossible, for example regarding proving knowledge of German.119 This too is the case in Hungary.120 Finally, the European Union has resolved to include in current and future legislation the guarantee of equal opportunities, fundamental rights, equal access to services and the employment market, and the same rights and obligations in accessing social security to persons with disabilities as nationals of relevant member states. Furthermore, migrant women and girls with disabilities will be supported to develop skills to afford them opportunities for suitable employment.121 This should lead to the revision of instruments such as the Asylum Procedures Directive of the European Commission,122 which does not provide adequate protection for migrants with disabilities.
3.4 Paragraph 1(c): Are free to Leave Any Country, Including Their Own The right to leave a country enables persons to move freely from their country of nationality or residence without undue obstacles. Leaving a country may be occasioned by many factors, including fear of or actual persecution (for refugees) or poverty (for migrants). Persons with disabilities too have the right to leave their country of nationality or country of residence. Border control and immigration policies should not stop any persecuted persons from seeking refugee status.123 The language of this paragraph conforms to article 12, paragraph 2, of the ICCPR which provides that: ‘Everyone shall be free to leave any country, including his own.’124 The Human Rights Committee has explained that the freedom to leave the territory of a state may not be made dependent on any specific purpose or on the period of time the 116 Art 7 of the Nationality Processing Guidelines. Cited in ‘Implementation of the CRPD: Initial Report Submitted b Korea’ UN Doc CRPD/C/KOR/1 (22 February 2013) para 84. 117 ‘Implementation of the CRPD: Initial Report Submitted by Denmark’ UN Doc CRPD/C/DNK/1 (7 May 2013) para 58. 118 ibid para 160. 119 ‘Implementation of the CRPD: Initial Report Submitted by Germany’ UN Doc CRPD/C/DEU/1 (7 May 2013) para 142. 120 ‘Implementation of the CRPD: Initial Report Submitted by Hungary’ UN Doc CRPD/C/HUN/1 (28 June 2011) para 105. 121 EC Committee on Employment and Social Affairs ‘Report on the Implementation of the UN Convention on the Rights of Persons with Disabilities with special regard to the Concluding Observations of the UN CRPD Committee’—Doc A8-0203/2016 (9 June 2016) paras 31–32. 122 Directive 2013/32/EU of the European Parliament and of the Council of 26 June 2013 on Common Procedures for Granting and Withdrawing International Protection, OJ L 180 (29 June 2013) 60–95. 123 Council of Europe, Commissioner for Human Rights, ‘The Right to Leave a Country’ (CoE October 2013). 124 The only drafting variation is the usage of gender-neutral language in the CRPD provision. See also Hurst Hannum, The Right to Leave and Return in International Law and Practice (Springer 1987); Ilias Bantekas, ‘Repatriation as a Human Right under International Law and the case of Bosnia’ (1998) 7 Michigan State University Journal of International Law and Practice 53.
mute
Article 18
527
individual chooses to stay outside the country.125 Pursuant to this paragraph, persons with disabilities have the freedom to leave their country or any other country. Any restrictions that may bar persons with disabilities from exercising this right must be necessary and subject to a proportionality test. As such, neither legal nor administrative hurdles should be placed in the way of persons with disabilities to stop them from travelling abroad, emigrating, or determining their destination. Even aliens under legal expulsion are entitled to determine their state of destination.126 As has already been explained, administrative impediments have been placed in the way of travellers with disabilities, for example with airlines declining to embark persons with certain types of disabilities. Legal hurdles have included denial of travel documents such as passports. One cannot leave their own country if they do not have a travel document. This means states have the positive obligation to provide travel documents to persons with disabilities. Conditions should not be placed on a permission for a person with disability to travel, and persons with disabilities therefore may also depart a country as potential emigrants.127
3.5 Paragraph 1(d) This paragraph is similar to paragraph 4 of article 12 of the ICCPR which provides that: ‘No one shall be arbitrarily deprived of the right to enter his own country’, but with the additional caveat that deprivation of such entry should not be made on the basis of one’s disability. That right also implies the right for anyone to remain in the country as well as the right to return to one’s country. The rationale for this right is founded on the special bond which a person has to their country of nationality.128 Indeed, modern bills of rights pointedly provide that every citizen has the right to enter, to remain in and to reside anywhere in their country.129 The UN Human Rights Committee has explained the concept of arbitrariness as used in paragraph (d) as follows: . . . The reference to the concept of arbitrariness in this context is intended to emphasise that it applies to all state action, legislative, administrative and judicial; it guarantees that even interference provided for by law should be in accordance with the provisions, aims and objectives of the Covenant and should be, in any event, reasonable in the particular circumstances. The Committee considers that there are few, if any, circumstances in which deprivation of the right to enter one’s own country could be reasonable. A state party must not, by stripping a person of nationality or by expelling an individual to a third country, arbitrarily prevent this person from returning to his or her own country.130
Protection of the right of persons with disabilities not to be barred from emigrating into another country though is not established explicitly in article 18. It should be recalled that the IDC proposed, without success, the inclusion of a paragraph stating that persons with disabilities had the right to: ‘enjoy on an equal basis with others the right to enter and immigrate to a country other than their state of origin’.131 With hindsight, this
125 UN HRCtee, ‘General Comment No 27: Article 12 (Freedom of Movement)’ UN Doc CCPR/C/21/ Rev 1/Add 9 (2 November 1999) para 8. 126 127 128 ibid. ibid. ibid para 20. 129 See s 21 of the Constitution of the Republic of South Africa (Summary no 108 of 1996). 130 General Comment No 27 (n 118) para 21; see Schulze (n 6) 110. 131 Chairman’s Text as amended by the International Disability Caucus, available at: .
mute
528
Liberty of Movement and Nationality
paragraph would in fact have captured more aptly the sorts of concerns that have exercised the mind of the Committee on entry into countries by non-nationals with disabilities. As we have already shown, the immigration policies of many countries discourage the migration of individuals who are deemed not to be productive; and migrants with disabilities have been viewed as being incapable of contributing to the economic, social, or cultural circumstances of host countries.132
4. Paragraph 2 ‘Children with disabilities shall be registered immediately after birth and shall have the right from birth to a name, the right to acquire a nationality and, as far as possible, the right to know and be cared for by their parents.’ This paragraph evokes article 24, paragraphs 2 and 3 of the ICCPR, and covers the key elements found in article 7, paragraph 1, of the CRC, which provides as follows: ‘The child shall be registered immediately after birth and shall have the right from birth to a name, the right to acquire a nationality and, as far as possible, the right to know and be cared for by his or her parents.’ The need to make specific provision for the naming and registration of children with disabilities immediately after birth arises because cultural, religious, and practical factors in real life undermine such naming and registration. It is not uncommon for infants with disabilities to stay unnamed because of cultural reasons and for their births to remain unregistered, particularly where those children are not born in hospital. Children with disabilities, for example those who require intensive support and who therefore may never have had opportunity to go to school, mature into adulthood without birth certificates, which in turn means they cannot apply for documents evidencing their nationality, such as national identity cards and passports.133 The Committee has indeed noted that: Persons with disabilities have the right to a name and registration of their birth as part of the right to recognition everywhere as a person before the law (art. 18, Para. 2). States parties must take the necessary measures to ensure that children with disabilities are registered at birth. . . . Children with disabilities are disproportionately likely not to be registered as compared with other children. This not only denies them citizenship, but often also denies them access to health care and education, and can even lead to their death. Since there is no official record of their existence, their death may occur with relative impunity.134
Even while children with disabilities are disproportionately likely to experience non- registration at birth, the consequences of such non-registration are gendered, and unregistered girls with disabilities are particularly at risk of violence from family members and caregivers.135 Ensuring the registration of all children at birth requires the establishment of a universal well-managed registration system that is accessible to all and free of charge. That system must be flexible and responsive to the circumstances of different families, and may 132 Nicola Burns, ‘No Entry: Exploring Disability and Migration’ Nordic Network on Disability Research (21 October 2013). 133 CRC Ctee, ‘General Comment No 9 (2006), The Rights of Children with Disabilities’ UN Doc CRC/ C/GC/9 (27 February 2007) para 35. 134 CRPD Committee, ‘General Comment No 1 (2014) Article 12: Equal Recognition Before the Law’ UN Doc CRPD/C/GC/1 (19 May 2014) para 31. 135 CRPD Committee, ‘General Comment No 3 (2016) Article 6: Women and Girls with Disabilities’ UN Doc CRPD/C/GC/3 (25 November 2016) para 35.
mute
Article 18
529
include mobile registration units, facilitation of late births registration, and the provision of services on an equal basis even to children who have not been registered.136 The Committee has time and again raised concerns about the non-registration or low level of registration of the births of children with disabilities (Ethiopia,137 Uganda)138 and the absence of data about such non-registered children, including girls (Gabon),139 children in situations of internal displacement and those living in refugee camps (Kenya),140 and the absence of information on the registration of Bedouin children with disabilities (United Arab Emirates).141 It has also been concerned about the non-registration of children, adolescents and adults with disabilities living in rural areas (Paraguay,)142 who hence do not have identity cards (El Salvador)143 or indeed a name (Guatemala).144 The Committee’s recommendations in these regards have included the strengthening of the birth registration system to ensure the immediate, simple and free registration and certification of all new-born children with disabilities, including those living in remote and rural areas, those living in refugee camps and those from minority groups.145
136 CRD Ctee, ‘General Comment No 7 (2005: Implementing Child Rights in Early Childhood’ UN Doc CRC/C/GC/7/Rev 1 (20 September 2006) para 25. 137 CRPD Committee, ‘Concluding Observations on the Initial Report of Ethiopia’ UN Doc CRPD/C/ ETH/CO/1 (4 November 2016) para 41. 138 CRPD Committee, ‘Concluding Observations on the Initial Report of Uganda’ UN Doc CRPD/C/ UGA/CO/1 (12 May 2016) para 36. 139 CRPD Committee, ‘Concluding Observations on the Initial Report of Gabon’ UN Doc CRPD/C/ GAB/CO/1 (2 October 2015) para 42. 140 CRPD Committee, ‘Concluding Observations on the Initial Report of Kenya’ UN Doc CRPD/C/ KEN/CO/1 (30 September 2015) para 35. 141 CRPD Committee, ‘Concluding Observations on the Initial Report of the United Arab Emirates’ UN Doc CRPD/C/ARE/CO/1 (3 October 2016) para 35 (c). 142 CRPD Committee, ‘Concluding Observations on the Initial Report of Paraguay’ UN Doc CRPD/C/ PRY/CO/1 (15 May 2013) para 45. 143 CRPD Committee, ‘Concluding Observations on the Initial Report of El Salvador’ UN Doc CRPD/C/ SLV/CO/1 (8 October 2013) para 39. 144 CRPD Committee, ‘Concluding Observations on the Initial Report of Guatemala’, UN Doc CRPD/C/ GTM/CO/1 (30 September 2016) para 51. 145 See above notes.
mute
Article 19 Living Independently and Being Included in the Community States Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that: (a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;
(b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community; (c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.
1. Introduction 2. Background and Travaux Préparatoires 3. Article 19: Chapeau 3.1 Measures Appropriate and Effective 3.2 De-Institutionalization 3.3 The Conjunction of Article 19 with Other CRPD Provisions 3.4 The Israeli Panel of Experts Paradigm 4. Paragraph (a) 5. Paragraph (b) 6. Paragraph (c)
530 533 536 536 538 542 543 547 552 555
1. Introduction Article 19, ‘Living independently and being included in the community’, is one of the most important rights in the United Nations Convention on the Rights of People with Disabilities (CRPD), since choice, freedom, and inclusion are considered as prerequisites for exercising all other rights. To facilitate such autonomy and participation it requires ratifying states to ensure that people with disabilities have the opportunity to choose where and with whom they live; and that they have access to the range of services necessary to support community living and to prevent isolation or segregation. Living independently does not mean living alone; rather, it means exercising freedom of choice and control over decisions affecting one’s life with the same level of independence and interdependence within society on an equal basis with others. ‘Living independently fiala-butora, rimmerman, and gur
Article 19
531
and being included in the community’ is considered as one such right, where autonomy and inclusion are mutually reinforcing and jointly avoid segregation.1 The article did not intend to add new disability rights, but instead relied upon existing general human rights and adapted in such a manner that benefits persons with disabilities.2 The article reflects a positive philosophy of promoting autonomy and choices; however, by the same token, it sends a clear message against institutionalization and congregate care. Interestingly, it fails to make an explicit statement against institutionalization, such as that expressed by the US Supreme Court in the Olmstead case,3 which is analysed in a section of this chapter. The CRPD is not the first international instrument addressing the right to independent living. The latter has been part of the United Nations (UN) Standard Rules on the Equalization of Opportunities for Persons with Disabilities4 and was one of the obligations identified by the UN Committee on Economic, Social and Cultural Rights (CESCR) in its General Comment No 5 on Persons with Disabilities.5 One of the main goals of the CESCR was to ‘enable persons with disabilities to live an integrated, self- determined and independent life’.6 The General Comment also mentioned the services necessary for persons with disabilities to boost their level of independence in their daily living (besides adequate food, accessible housing, and other basic material needs, and rehabilitation services). The CESCR specifically listed ‘support services, including assistive devices’ and ‘appropriate personal assistance’ provided in a manner fully respecting the human rights of persons concerned.7 The CRPD Committee considers that article 19 is rooted deeply rooted in international human rights law, particularly in article 29(1) of the Universal Declaration on Human Rights, the right to liberty and freedom of movement in article 12 of the International Covenant in Civil and Political Rights (ICCPR), and the right to adequate standard of living in article 11 of the International Covenant on Economic, Social and Cultural Rights (ICESCR).8 Article 19 is one of the essences of the CRPD as stated in its purpose (article 1). As the CRPD Committee’s recently released General comment stresses, the article covers two related concepts: the right to independent living and the right to be included in 1 See eg ‘The daily summaries of discussion at the seventh session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (19–20 January 2006), available at: www.un.org/esa/socdev/enable/rights/ ahc7sum19jan.htm and www.un.org/esa/socdev/enable/rights/ahc7sum20jan.htm; see also the ‘Report of the Third Session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities,’ fn 53, available at: www. un.org/esa/socdev/enable/rights/ahc3reporte.htm and ‘The daily summary of discussions related to Article 15’, available at: www.un.org/esa/socdev/enable/rights/ahc3sum15.htm. 2 See Don McKay, ‘Symposium: The United Nations Convention on the Rights of Persons with Disabilities’ (2007) 34 Syracuse J Int’l L & Com 323, in which he claims that Art 19 is seen as shifting from viewing people with disabilities as objects to rights holders capable of directing their own personal destinies. 3 See Olmstead v L C 527 US 581 (1999) 138 F 3d 893, affirmed in part, vacated in part, and remanded. The US Supreme reached its conclusion by relying on the non-discrimination provisions of the Americans with Disabilities Act of 1990. The Court’s reasoning, that institutionalization of people with disabilities who are capable of living in the community may constitute unlawful discrimination under the Americans with Disabilities Act (ADA), may serve as a model for a similar recognition under international human rights law. 4 UNGA Res 48/96 (4 March 1994), ‘Standard Rules of Equalization of Opportunities for Persons with Disabilities’. 5 CESCR General Comment No 5: Persons with Disabilities UN Doc E/1995/22 (9 December 1994). 6 7 ibid para 16. ibid para 33. 8 CRPD General Comment No 5 on article 19: Living independently and being included in the community, UN Doc CRPD/C/18/1 (29 August 2017) para 9.
fiala-butora, rimmerman, and gur
532
Living Independently and Being Included in the Community
the community.9 Interestingly, ‘living independently,’ which appears in the heading, is missing from the text. It reflects the preamble to the CRPD, namely paragraph (n), which sets out that the global community recognizes ‘the importance for persons with disabilities of their individual autonomy and independence, including the freedom to make their own choices’.10 Living independently echoes the first principle listed in the Convention, that of ‘[r]espect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of person’.11 The term, ‘independent living,’ is closely associated with the independent living movements in the United States and the United Kingdom in the mid-1970s. These movements called for enabling autonomous life for persons with mobility impairments. In the United States, one of the first landmarks of the disability rights movement was the establishment of the first Center for Independent Living in 1972 by students of the University of California at Berkeley.12 The centre departed from the medical model of disability by focusing on social issues and was run by persons with disabilities, offering peer support to persons with disabilities with the intention of integrating them into the community. Similar centres were later established around the country and the activism of their members led to increased advocacy for disability rights, culminating in the adoption of the Americans with Disabilities Act (ADA) in 1990.13 Independent living took another path in the United Kingdom, with the efforts of the Union of the Physically Impaired against Segregation and the Disability Alliance (UPIAS) to fight against medical control of people with disabilities.14 The 1976 ‘Fundamental Principles of Disability’15 may be viewed as the first articulation of the social model of disability. Another manifestation of the independent living movement was in response to the institutionalization of persons with intellectual and psychosocial disabilities. Advocating for the closure of institutions and rehabilitating their residents has become the main mission of the Europe-wide Coalition for Independent Living, which was formed in 2005, acting as an umbrella organization for the movement and raising its profile at the European level.16 Independent living was interpreted as a struggle of persons with mobility impairment to exercise their right to make personal decisions and to remove medical and professional control. However, the term is associated also with the call to remove enforced institutionalization of people with intellectual and psychiatric disabilities and to fight against restrictive guardianship laws. Article 19 reflects the right of all persons with disabilities to live in the community on an equal basis with others. It expressly forbids forcing persons with disabilities to live in ‘a particular living arrangement’ (article 19(a)) and obliges states to provide the necessary services that allow all persons with disabilities to live in the community in a meaningful
10 11 ibid para 19. See Preamble (n) CRPD. See Art 3(a) CRPD. See eg Joseph P Shapiro, No Pity: People with Disabilities Forging a New Civil Rights Movement (Times Books 1993). 13 See eg ‘Introduction to the ADA’ available at: . 14 Adam M Samaha, ‘What Good Is the Social Model of Disability?’ U Chi L Rev 74 (2007) 1251. 15 Available at: . 16 The European Coalition for Community Living’s (ECCL) website can be accessed at: . 9
12
fiala-butora, rimmerman, and gur
Article 19
533
and integrated way (paragraphs (b) and (c)). These are important reiterations of existing political goals and commitments of the disability rights movement.
2. Background and Travaux Préparatoires The core drafting of article 19 took place in the Third, Fourth (23 August to 3 September 2004), Sixth (1–12 August 2015), and Seventh Session (24 January to 3 February 2006). At its Eighth session from 14 to 25 August 2006, the Ad Hoc Committee adopted the draft text of the Convention including an optional protocol, as a whole. Article 19 has been marked as article 15 in the draft text prepared by the working group for the third session, and remained so until the sixth session.17 The core discussion during the third session has been about the title and essence of article 15. New Zealand proposed ‘Living independently and being included in the community’, whereas South Africa offered to replace ‘included’ with ‘integrated’.18 Jordan proposed ‘Independent community living’, Mexico—‘Inclusion in the community and independent living’, India—‘Right to a life independence in the community’, and Yemen—‘Independent living and social integration’.19 The impression has been that some members of the Working Group expressed the concern that the words ‘living independently’ in the title and the chapeau of this draft article did not reflect the cultural norm in many countries, and that the words might suggest that persons with disabilities should be separated from their families. The cultural differences were evident also in the approach toward institutionalization. In phrasing section 15b, Jordan proposed that ‘persons with disabilities are not obliged to live in an institution or in particular living arrangement,’ to which South African added ‘unless there it is found appropriate’.20 The same applied to the basic approach to families. Morocco proposed in Section (f ) ‘Support to the families who are taking care of persons with disabilities and also provide material and moral support and provide them with the necessary assistance to ensure the inclusion of persons with disabilities in society.’21 At that time, the drafters included also Women with Disabilities to Article 15.22 The fourth session dealt with the same issues related to article 15. The core debate is reflected in Korea’s note that article 15 attempts to take into account various cultures and models of disability, and as a result the title sounds awkward.23 Korea proposed instead ‘Independent living and community inclusion’, with independent living referring to a principle rather than a model of disability. In accordance with this title, the end of the 17 Ad Hoc Committee, ‘Report of the Working Group to the Ad Hoc Committee, Annex I: Draft articles for a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2004/WG/1 (5–16 January 2004). 18 Ad Hoc Committee, Daily summary of discussions related to Article 15—Living independently and being included in the community, Vol 4 #5 (28 May 2004), available at: (accessed 23 August 2017). 19 ibid. 20 Ad Hoc Committee, ‘Report of the third session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’, UN Doc A/AC265/2004/5 (9 June 2004). 21 22 ibid. ibid. 23 Ad Hoc Committee, Daily summary of discussions related to Article 15—Living independently and being included in the community, Volume 5 #5 (27 August 2004), available at: (accessed 23 August 2017).
fiala-butora, rimmerman, and gur
534
Living Independently and Being Included in the Community
chapeau was proposed to be amended to read ‘enjoy independent living and full inclusion in the community, including by ensuring that . . .’.24 New Zealand proposes a revised article to reflect the connection between the right and steps states must take to ensure exercise of the right by PWD.25 The draft incorporated aspects of the EU proposals addressing avoidance of institutionalization and retaining liberty. It also included provisions from other articles, including article 23(1)(d) addressing housing programmes, 20(a) regarding mobility aids and assistance, and a provision from article 9 related to equal access to opportunities for economic development and financial independence.26 There is also an emphasis on the need to avoid an institutional approach to support provision. Israel raised a concern that ‘independence’ in this article may be interpreted by many professionals in a manner contradictory to the spirit of the convention and the idea of living in the community.27 The title should therefore refer generally to the right of living in the community as a basic unconditional principle, and the article emphasize the principle that the right to live in the community and to take part in all its activities belongs to every person, along with the right to equality, regardless of the level of physical or psychosocial independence. An inherent part of the right to live in the community is freedom of choice, including freedom to define what ‘community’ means. There are various ways of living and PWD are the only ones who can make their own choices and decisions.28 The Disability Caucus noted that the right to live within the community touches upon the basic right to a home, and denial of this right is also a denial of the right to equality.29 The right has two sides: prohibition of forced institutionalization, and ensuring the necessary conditions to make living in the community a real choice for PWD. The prohibition against forced institutionalization should be stronger in article 15(1)(b), stating ‘compulsory institutionalization is prohibited’. In article 15(1)(a) it should explicitly state that PWD have the right to choose where and with whom they live. Article15(1)(c) should also state that PWD have the freedom to choose whether to accept support, and if so how such support will be provided and by whom.30 The sixth session reflected the general support to the essence of draft article 15 that persons with disabilities should be free to choose their living arrangements on an equal basis with others. It was also noted that the key to this draft article was the right of every person with disabilities to live in the community.31 The seventh session is considered the final drafting phase of the article whose numbering changed from 15 to 19.32 The discussion that took place on 19 January 2006
ibid. Ad Hoc Committee, Contributions submitted by Governments in electronic format at the Fourth Session—Proposed Modifications to Draft Article 15 (26 August 2004), available at: (accessed 23 August 2017). 26 27 28 ibid. ibid. ibid. 29 Ad Hoc Committee, Daily summary of discussions related to Article 15—Living independently and being included in the community, Vol 5 #5 (27 August 2004), available at: (accessed 23 August 2017). 30 ibid. 31 Ad Hoc Committee, ‘Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its sixth session’ UN Doc A/60/266 (17 August 2005). 32 General Assembly, ‘Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its seventh session’ UN Doc A/AC265/2006/2 (13 February 2006). 24 25
fiala-butora, rimmerman, and gur
Article 19
535
introduced probably the core debate on the meaning of independent living.33 Israel and the International Disability Caucus (IDC), for example, supported deletion of ‘independently’ from article 19.34 Both were concerned that the phrase ‘living independently’ would be used negatively as a basis for preventing people with disabilities from living in the community. Both argued that it was not sufficient for the right to live in the community to be implicit. On the contrary, it was essential to affirm this right explicitly. The intention to delete ‘independently,’ both from the caption and the text of article 19 was to avoid misinterpretation primarily for those persons with disabilities who are capable of living in the community independently without support and assistance.35 The IDC stance was against institutionalization of children suggesting adding to paragraph (a) the following: ‘in no case shall a child with a disability be institutionalized on the basis of his or her disability’.36 Kenya fully supported Israel’s proposal, indicating that stronger language was needed in the chapeau to affirm the right of people with disabilities to live in the community. Without such changes, the focus was on the right of states, not people with disabilities. Kenya also supported deleting language that suggested that people with disabilities could be forced to live outside the community if they needed assistance.37 Austria, on behalf of the European Union, expressed its support for the text, but remained flexible. However, the European Union was concerned that the term could be used negatively. It noted that the right to mobility was not a right that existed in other conventions and that the European Union might not support this language.38 Yemen expressed its sensitivity to the critical issues arising from article 19, but recommended deleting the concept of choice of residence.39 In Yemen, the concept of family is sacrosanct under Islamic law and is not limited by age. For example, at the age of eighteen a person would not generally separate from the family. This is lawful and in compliance with familial obligations. In these cases, the head of the family would be maintained. The concept of choice could cause difficulty unless defined in very clear terms. There must be a balance between the right to choice and the right as dictated by religious norms. Yemen could not accept a choice to live in an institution against remaining with the family. It therefore required deletion of ‘choice’ from the chapeau. Similar stance has been stated by the Syrian Arab Republic.40 Interestingly, New Zealand and Canada fully supported Israel’s proposal for the chapeau, indicating that the proposal would not be creating new rights but rather clarifying existing rights as they applied to people with disabilities.41 Japan strongly supported retaining ‘living independently’, claiming that it guaranteed dignity and autonomy.42 Japan considered that people with disabilities needed support to live independently with appropriate assistance.43 Similarly, Costa Rica shared Japan’s view
33 Ad Hoc Committee, Daily summary of discussion at the seventh session, Vol 8 #4 (19 January 2006), available at: (accessed 23 August 2017). 34 Ad Hoc Committee, Israel Position Paper for the 7th Ad Hoc Committee—First week (12 January 2006), available at: (accessed 23 August 2017). 35 ibid. 36 Ad Hoc Committee, Article 19: New text from the IDC (12 January 2006), available at: (accessed 23 August 2017). 37 Ad Hoc Committee, Daily summary of discussion at the seventh session, Vol 8 #4 (19 January 2006), available at: (accessed 23 August 2017). 38 39 40 ibid. ibid. ibid. 41 Ad Hoc Committee, Daily summary of discussion at the seventh session, Vol 8 #5 (20 January 2006), available at: (accessed 23 August 2017). 42 43 ibid. ibid.
fiala-butora, rimmerman, and gur
536
Living Independently and Being Included in the Community
and disagreed with Israel’s stance to explicitly affirm the right to live in the community.44 In equal manner, Serbia and Montenegro opined that deleting the term ‘independent living’ might be wrong, as the rights expressed in article 19 are primarily economic and social and therefore subject to progressive realization.45 South Africa supported retaining the original text of article 19, but noted that the article must clearly indicate the intention to enhance and protect the dignity and integrity of those living at home.46 Despite the support for Israel’s proposal, which resolved some issues in the chapeau, the decision was to retain ‘living independently’.47 The overall agreement was that this term should be handled with caution, in particular for people with disabilities who could not live independently or might be prevented from living in the community.
3. Article 19: Chapeau Article 19 does not define the scope of ‘independently’ and is silent as regards the proper boundaries of this right or what constitute appropriate and effective measures. Some definitions were provided by the CRPD Committee’s General comment no 5: ‘independent living’ means that persons with disabilities can exercise choice and control over their lives and can make all decisions concerning their lives.48 Being included in the community requires full and effective inclusion and participation in a full social life, including living a full social life and having access to all services offered to the public.49 The article links the notion of independence to choice and control over daily living arrangements, rather than to unaided functional ability. Therefore, the article consists of three core mechanisms: choice (paragraph a), individualized support (paragraph b), and availability and accessibility of community services and facilities (paragraph c).50 Although these requirements are expressed in different paragraphs, they are closely connected: the lack of support and services leads to lack of choices by persons with disabilities over their living arrangements and subsequently to their institutionalization.51 As the CRPD Committee emphasized, the non-existence of support services is a manifestation of the ‘institutionalization model’, which states parties are obliged to overcome under the terms of article 19.52
3.1 Measures Appropriate and Effective The chapeau of article 19 obliges states parties to take effective and appropriate measures to fulfil the right to independent living. The CRPD Committee in its concluding observations has specified that this involves adopting de-institutionalization strategies based on the human rights model of disability.53 Domestic strategies must involve an appropriate 45 46 ibid. ibid. ibid. General Assembly, ‘Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its seventh session’ UN Doc A/AC265/2006/2 (13 February 2006). 48 49 CRPD General comment no 5 (n 8) para 16. ibid. 50 Available at: . 51 CRPD Committee, Concluding Observations: Spain UN Doc CRPD/ C/ ESP/ CO/ 1 (19 October 2011) para 39. 52 CRPD Committee, Concluding Observations: Bolivia UN Doc CRPD/C/BOL/CO/1 (4 November 2016) para 49. 53 CRPD Committee, Concluding Observations: Republic of Korea UN Doc CRPD/C/KOR/CO/1 (29 October 2014) para 38. 44 47
fiala-butora, rimmerman, and gur
Article 19
537
legal and policy framework on the right to independent living54 and accompanied by the necessary measures to implement them, which includes the setting up of community services.55 According to General comment no 5 sub-articles 19 (b) and (c) are economic, social, and cultural rights subject to progressive realization.56 Nevertheless, the state is under an immediate obligation under the chapeau to enter into strategic planning with adequate timeframes and resorting about the implementation of its obligations.57 Developing a concrete action plan for independent living and support services is also one of the core obligations under article 19, which states must fulfil under all conditions.58 Unlike the CRPD mandate which emphasizes that states must ‘take effective and appropriate measures’ to ensure that persons with disabilities live independently and in the community, in US judicial practice the right as enunciated in Olmstead is different.59 When determining whether conditions pursuant to the Americans with Disabilities Act’s (ADA) limitations cause a fundamental alteration in the provided services, US courts may take into account the economic impact on a state of moving individuals to community- based homes.60 Specifically, although the reasonable modification requirement of Title II of ADA does not include an undue hardship defence, courts have generally read undue hardship into the fundamental alteration defence.61 US courts generally consider whether the change would cause an undue financial or administrative burden on the entity.62 A number of states, such as Belgium,63 Mongolia,64 and Portugal,65 have failed to adopt a de-institutionalization plan, which clearly falls short of the requirements of article 19. 54 CRPD Committee, Concluding Observations: El Salvador UN Doc CRPD/C/SLV/CO/1 (8 October 2013) para 41. 55 CRPD Committee, Concluding Observations: Paraguay UN Doc CRPD/ C/ PRY/ CO/ 1 (15 May 2013) para 48. 56 57 58 CRPD General comment no 5 (n 8) para 39. ibid para 42. ibid para 38. 59 See Anita Silvers and Michael Ashley Stein, ‘Disability, Equal Protection, and the Supreme Court: Standing at the Crossroads of Progressive and Retrogressive Logic in Constitutional Classification’ (2008) 35 U Mich J L Reform 81. 60 eg consider the competing claims facing the court in Townsend v Quasim (9th Cir 2003) 328 F3d 511 520: ‘Plaintiffs have asserted that it is cheaper on a per capita basis to provide long-term care services to individuals in a community-based setting rather than a nursing home. . . . At the same time, even if extension of community-based long term care services to the medically needy were to generate greater expenses for the state’s Medicaid program, it is unclear whether these extra costs would, in fact, compel cutbacks in services to other Medicaid recipients.’ 61 In Crabtree v Goetz, 2008 WL 5330506 (M D Tenn 19 December 2008) the court identified three factors to consider whether the fundamental alteration defence arises: 1) state’s ability to continue meeting the needs of other institutionalized mental health patients for whom community placement is not appropriate; 2) whether the state has a waiting list for community placements; and 3) whether the state has a developed a comprehensive plan to move eligible. In another case, Messier v Southbury Training School (STS), 562 F Supp 2d 294 (D Conn 2008), the court noted that it is unlikely that ‘massive’ or ‘gigantic’ changes will result from ordering the state to exercise professional judgment in considering whether class members are qualified for community placements and then in placing them in such. Because the state has made a public commitment to further enhance its system of community placements, the court rejected its argument that placement in the community is a fundamental alteration. 62 See the relevance of cost in determining whether to award accommodation under ADA in Vande Zande v Wisconsin Dep’t of Admin 44 F 3d 538, 543 (7th Cir 1995). 63 CRPD Committee, Concluding Observations: Belgium UN Doc CRPD/C/BEL/CO/1 (28 October 2014) para 32. 64 CRPD Committee, Concluding Observations: Mongolia UN Doc CRPD/C/MNG/CO/1 (13 May 2015) para 31. 65 CRPD Committee, Concluding Observations: Portugal UN Doc CRPD/ C/ PRT/ CO/ 1 (20 May 2016) para 38.
fiala-butora, rimmerman, and gur
538
Living Independently and Being Included in the Community
The existence of a national plan is also no guarantee for meeting one’s obligations under the CRPD. In any event, the plans in place must be specific and effective,66 accompanied by legislative, financial, and other measures, such as adequate resources and specific assessment measures.67 The plans must be accompanied with an effective roadmap setting out specific targets.68 They must be developed in consultation with persons with disabilities69 or their representative organizations.70 The following section focuses specifically on the issue of de-institutionalization as this arises from the obligations contained in Article 19 CRPD.
3.2 De-Institutionalization The effective implementation of de-institutionalization measures requires effective and regular monitoring71 through the use of concrete benchmarks72 and measurable human rights-based indicators.73 It must also be accompanied by sufficient resources74 in the form of specific budgetary allocations for the development of community services.75 In a number of cases, the CRPD Committee found that despite their commitments, states parties continue to invest their available resources building,76 renovating,77 and expanding institutions,78 sometimes with the support of the European Union’s structural funds.79 Renovating institutions is not prohibited as such under article 19, but an appropriate balance must be found between competing policy objectives. For example, the Committee criticized Hungary for allocating disproportionally large resources to reconstruction.80 Any funds inappropriately used must be re-allocated to developing
66 CRPD Committee, Concluding Observations: Mexico UN Doc CRPD/C/MEX/CO/1 (27 October 2014) para 43. 67 CRPD Committee, Concluding Observations: Guatemala UN Doc CRPD/ C/ GTM/ CO/ 1 (30 September 2016) para 54. 68 CRPD Committee, Concluding Observations: Turkmenistan UN Doc CRPD/C/TKM/CO/1 (13 May 2015) para 33. 69 CRPD Committee, Concluding Observations: Mongolia UN Doc CRPD/C/MNG/CO/1 (13 May 2015) para 31. 70 CRPD Committee, Concluding Observations: Portugal UN Doc CRPD/ C/ PRT/ CO/ 1 (20 May 2016) para 39. 71 CRPD Committee, Concluding Observations: Czech Republic UN Doc CRPD/C/CZE/CO/1 (15 May 2015) para 40. 72 CRPD Committee, Concluding Observations: Paraguay UN Doc CRPD/ C/ PRY/ CO/ 1 (15 May 2013) para 48. 73 CRPD Committee, Concluding Observations: Kenya UN Doc CRPD/C/KEN/CO/1 (30 September 2015) para 38. 74 CRPD Committee, Concluding Observations: Ukraine UN Doc CRPD/C/UKR/CO/1 (2 October 2015) para 37. 75 CRPD Committee, Concluding Observations: Kenya UN Doc CRPD/C/KEN/CO/1 (30 September 2015) para 38. 76 CRPD Committee, Concluding Observations: Belgium UN Doc CRPD/C/BEL/CO/1 (28 October 2014) para 33. 77 CRPD Committee, Concluding Observations: Lithuania UN Doc CRPD/C/LTU/CO/1 (11 May 2016) para 41. 78 CRPD Committee, Concluding Observations: European Unions UN Doc CRPD/C/EU/CO/1 (2 October 2015) para 51. 79 CRPD Committee, Concluding Observations: Lithuania UN Doc CRPD/C/LTU/CO/1 (11 May 2016) para 41. 80 CRPD Committee, Concluding Observations: Hungary UN Doc CRPD/C/HUN/CO/1 (22 October 2012) para 33.
fiala-butora, rimmerman, and gur
Article 19
539
community-based alternatives.81 In General comment no 5, the CRPD Committee clarified that institutions can be renovated only to the extent of ‘the most urgent measures necessary to safeguard residents’ physical safety’.82 Specifically with regard to European Union funds, the Committee recommended that they should only be used for development of community-based alternatives.83 Article 19 is consonant with the EU Commission strategy (2003–2010) ‘Independent Living of People with Disabilities’.84 The core instrument to narrow the gap in community living between Western and Eastern Europe was the Structural Funds.85 The latter was part of its regional policy to promote economic and social cohesion in the EU. The funds are earmarked for development purposes, with €347.410 billion for 2007–13, which is a third of the total EU budget.86 Given that the EU has allocated the Structural Funds to improve the lives of Europeans, it is important to inquire whether central and eastern European countries have used them to promote closure of institutions and the development of community care alternatives. The overall impression is that there were significant problems in implementing them in most central and eastern European countries. An interesting briefing of the use of the Structural Funds in Bulgaria, Hungary, Latvia, Lithuania, Romania, and the Slovak Republic during 2007–13 demonstrated the key problems of the EU’s strategy.87 The most significant problem with Structural Funds investments during the current financing period is that in some countries they have been used to renovate or build new, long-stay residential institutions. The European Coalition for Independent Living (ECCL) and the Open Society Mental Health Initiative (MHI) report that Structural Funds have been invested in such projects in Hungary, Latvia, Lithuania, Slovakia, Bulgaria, and Romania. Other organizations have expressed similar concerns in the Czech Republic.88 In some cases, the projects clearly stated that they were destined for the renovation and expansion of such institutions, whereas other projects that appear to 81 CRPD Committee, Concluding Observations: Czech Republic UN Doc CRPD/C/CZE/CO/1 (15 May 2015) para 39. 82 CRPD General comment no 5 (n 8) para 49. 83 See CRPD Committee, Concluding Observations: European Union UN Doc CRPD/C/EU/CO/1 (2 October 2015) para 51. The Committee recommends that the European Union develop an approach to guide and foster de-institutionalization and to strengthen the monitoring of the use of the European Structural and Investment Funds so as to ensure that they are used strictly for the development of support services for persons with disabilities in local communities and not for the redevelopment or expansion of institutions. The Committee also recommends that the European Union suspend, withdraw, and recover payments if the obligation to respect fundamental rights is breached. 84 Commission Communication COM (2003) 650 of 30.10.2003, ‘Equal Opportunities for People with Disabilities: A European Action Plan’. 85 Regulation (EU) No 1303/2013 of the European Parliament and of the Council of 17 December 2013 laying down common provisions for EU Structural Funds and repealing Council Regulation (EC) No 1083/ 2006, available at: . 86 European Union, The Control System for Cohesion Policy (Office for Official Publications of the European Union 2009) 5. 87 Camilla Parker and Ines Bulic, Briefing on Structural Funds Investments for People with Disabilities: Achieving the Transition from Institutional Care to Community Living (European Network on Independent Living, European Coalition for Community Living 2013). 88 See concerns raised by the League of Human Rights regarding the use of European structural funding. The Czech government continues to use most of the funding to support large residential institutions rather than to set up a community-based system of care, available at: .
fiala-butora, rimmerman, and gur
540
Living Independently and Being Included in the Community
be for the development of community-based alternatives create replicas of institutions in smaller settings. A particular concern is Bulgaria which has failed to develop community- based services. The ECCL claimed that the inappropriate use of the Structural Funds was contrary to EU policy objectives, EU law, and international human rights standards.89 For example, in Hungary no EU funds were used to close the large institutions and develop community-based alternatives to institutionalization. This was because at that time EU regulations did not specifically cover social services and therefore the documents outlining Hungary’s social policy on its accession to the EU in 2004 did not include such plans. Despite the existence of domestic legislation requiring the closure of large institutions, all funds until 2010 were used to support existing residential institutions rather than develop alternatives.90 Similarly, in Latvia the government renovated an institution of 168 people in Tails district by using €1,433,985 of ERDF funds (from the programming period 2004–06) instead of offering alternative community care projects.91 States parties do not have to close all their institutions immediately. Rather, de- institutionalization may be gradual.92 However, states are required to take immediate steps to phase out and eliminate institutional care.93 Moreover, de-institutionalization strategies must have realistic timeframes.94 In the case of Hungary, a thirty-year plan to complete de-institutionalization was not accepted by the CRPD Committee.95 In a number of countries, the Committee noted a worrying trend of re-institutionalization,96 manifesting in the increase of the number of institutions97 and persons living in them,98 which is contrary to the requirements of article 19. De-institutionalization plans must cover all forms of institutions. Partial plans, which encompass only some types of institutions and leave others intact, fall short of the requirements of article 19.99 The plan must also address the situation of persons with disabilities of all sexes, age, and impairment.100 In Slovakia, for example, the Committee has found women to be at higher risk of institutionalization than men, this being something that
89 See ECCL Briefing on Structural Funds Investments for People with Disabilities, available at: . 90 Zsolt Bugarszki, Orsolya Eszik et al, ‘One Step Forwards, Two Steps Backwards, Deinstitutionalisation of Large Institutions and Promoting Community-Based Living in Hungary through the use of the Structural Funds of the European Union’ February 2010. 91 ECCL, ‘Wasted Time, Wasted Money, Wasted Lives . . . A Wasted Opportunity? A Focus Report’ (2010). 92 CRPD Committee, Concluding Observations: Paraguay UN Doc CRPD/ C/ PRY/ CO/ 1 (15 May 2013) para 48. 93 CRPD Committee, Concluding Observations: China UN Doc CRPD/C/CHN/CO/1 (15 October 2012) para 32. 94 CRPD Committee, Concluding Observations: Kenya, UN Doc CRPD/C/KEN/CO/1 (30 September 2015) para 38. 95 CRPD Committee, Concluding Observations: Hungary UN Doc CRPD/C/HUN/CO/1 (22 October 2012) para 33. 96 CRPD Committee, Concluding Observations: Italy UN Doc CRPD/ C/ ITA/ CO/ 1 (6 October 2016) para 47. 97 CRPD Committee, Concluding Observations: Republic of Korea UN Doc CRPD/C/KOR/CO/1 (29 October 2014) para 37. 98 CRPD Committee, Concluding Observations: Austria UN Doc CRPD/C/AUT/CO/1 (30 September 2013) para 36. 99 CRPD Committee, Concluding Observations: Croatia UN Doc CRPD/ C/ HRV/ CO/ 1 (15 May 2015) para 29. 100 CRPD Committee, Concluding Observations: Lithuania UN Doc CRPD/C/LTU/CO/1 (11 May 2016) para 39.
fiala-butora, rimmerman, and gur
Article 19
541
domestic measures should take into account.101 Persons with intellectual and psychosocial disabilities are often left out of de-institutionalization efforts and receive very limited support.102 With regard to the Czech Republic, the Committee was critical of the lack of plans to develop community-based alternatives for elderly persons with disabilities.103 The Committee has also been very strict in condemning the institutionalization of children and particularly of children below the age of three,104 requiring a moratorium on any new admissions to child residential institutions.105 De-institutionalization must involve all children, including children with psychosocial and/or intellectual impairments.106 The European Court of Human Rights (ECtHR) has addressed several provisions in the European Convention on Human Rights (ECHR) with relevance to independent living, without reference to article 19 CRPD. However, its judgments illustrate similar principles. In Stanev v Bulgaria,107 which was decided by the Grand Chamber in January 2012, the European Court held for the first time that placement in a social care institution violates the ECHR. In 2000, the applicant was declared to be partially lacking legal capacity on the ground that he was suffering from schizophrenia. In 2002, the applicant’s guardian agreed on his behalf for him to be placed in a social care home for people with mental disorders near a village in a remote mountain location. The applicant never consented to his institutionalization. Under article 5 ECHR (right to liberty and security) he alleged that he had been deprived of his liberty unlawfully and arbitrarily as a result of his placement in an institution against his will and that it had been impossible under Bulgarian law to have the lawfulness of his deprivation of liberty examined or to seek compensation in court. The ECtHR held that there had been a violation of article 5(1) ECHR (right to liberty and security) in that the applicant had been illegally detained in the institution in question. It observed in particular that the decision to place the applicant had not been lawful within the meaning of article 5(1) ECHR since none of the exceptions provided for in that article were applicable, including article 5(1) (e)––deprivation of liberty of a ‘person of unsound mind’. The period that had elapsed between the expert psychiatric assessment relied on by the authorities and the applicant’s placement in the home, during which time his guardian had not checked whether there had been any change in his condition and had not met with or consulted him, had furthermore been excessive and a medical opinion issued in 2000 could not be regarded as a reliable reflection of the state of the applicant’s mental health at the time of his placement in the home (in 2002). The ECtHR further held that there had been a violation of article 5(4) ECHR (right to have lawfulness of detention reviewed by a court) concerning the impossibility for the applicant to bring proceedings to have the lawfulness of his detention decided by a court, as well as a violation of article 5(5) (right to compensation) 101 CRPD Committee, Concluding Observations: Slovakia UN Doc CRPD/ C/ SVK/ CO/ 1 (17 May 2016) para 55. 102 CRPD Committee, Concluding Observations: Ukraine UN Doc CRPD/C/UKR/CO/1 (2 October 2015) para 36. 103 CRPD Committee, Concluding Observations: Czech Republic UN Doc CRPD/C/CZE/CO/1 (15 May 2015) para 38. 104 CRPD Committee, Concluding Observations: Lithuania UN Doc CRPD/C/LTU/CO/1 (11 May 2016) para 39. 105 CRPD Committee, Concluding Observations: Czech Republic UN Doc CRPD/C/CZE/CO/1 (15 May 2015) para 40. 106 CRPD Committee, Concluding Observations: El Salvador UN Doc CRPD/C/SLV/CO/1 (8 October 2013) para 42. 107 Stanev v Bulgaria App no 36760/06 (17 January 2012).
fiala-butora, rimmerman, and gur
542
Living Independently and Being Included in the Community
concerning the impossibility for him to apply for compensation for his illegal detention and the lack of review by a court of the lawfulness of his detention. The Stanev decision was the first one in which the ECtHR held that institutionalization constitutes deprivation of liberty. This was later confirmed in other cases, such as D D v Lithuania108 and Kedzior v Poland.109 In Mihailovs v Latvia,110 the ECtHR found that Mr Mihailovs’ placement in an institution was unlawful, in particular as there had been no objective medical opinion to justify his detention and that under Latvian law there was no possibility for persons in such a situation to have their detention reviewed by the courts. In the decision given by the ECtHR on 22 January 2013 there is a clear recognition that Mr Mihailovs’ institutionalization for years against his will without any review was a violation of article 5(1) ECHR (right to liberty and security). This applied to the period between January 2002 and April 2010. In addition, the ECtHR decided that there was a violation of article 5(4) EHCR (right to court review of lawfulness of detention). The Court was also concerned about his legal capacity and the fact that he had been held against his will in a social care institution for more than ten years without the possibility of release. While the decision was based on the European Convention on Human Rights, it was also sending a clear message to European countries that had ratified the CRPD. The mechanisms and practices conducted by the state which permit forced institutionalization, forced treatment, deprivation of legal capacity, and discrimination against persons with psychosocial disabilities represent serious violations of fundamental human rights.
3.3 The Conjunction of Article 19 with Other CRPD Provisions Independent living, as phrased in article 19, cannot stand by itself and must be read in conjunction with a number of the CRPD’s other articles. Article 5 CRPD, for example, lays down the duty on states parties to prohibit discrimination based on disability. Discrimination, as article 2 CRPD makes clear, includes a failure to provide reasonable accommodation. ‘Reasonable accommodation’ is itself defined as a ‘necessary and appropriate’ modification or adjustment which is needed in a ‘particular case’ to ensure access for a person with disabilities to a particular right or freedom ‘on an equal basis with others’ and which does not impose a ‘disproportionate or undue burden’.111 The same applies to article 26––the need to provide support to facilitate independent living and community participation. States parties must take ‘effective and appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life’. Article 19 is further linked the fulfilment of articles 12 and 8 CRPD. Human flourishing can only exist when there is equal recognition before the law (article 12), as D.D. v Lithuania App no 13469/06 (14 February 2012). Kedzior v Poland App no 45026/07 (16 October 2012). 110 Mihailovs v Latvia App no 35939/10 (22 January 2013) 111 See European Union Agency for Fundamental Rights, Choice and Control: The Right to Independent Living (FRA 2011), available at: (accessed 2 January 2017). The report outlines the findings of interview-based research carried out in 2010 and 2011 in nine European Union member states with persons with mental health problems and persons with intellectual disabilities. The research examined how they experienced the principles of autonomy, inclusion, and participation in their day-to-day lives. 108 109
fiala-butora, rimmerman, and gur
Article 19
543
well as awareness and receptiveness to the rights of people with disabilities (article 8). Article 12 expresses the fundamental right of persons with disabilities to exercise their legal capacity on an equal basis with others. Article 19(a) CRPD, as well as article 3(a), addressing individual autonomy,112 is closely linked to the right to legal capacity primarily because the person’s need to be recognized before the law is crucial for making decisions about place of residence and where and with whom one will live. Each person has the right to legal capacity on an equal basis with others.113 There is no doubt that the state has an important duty in ensuring persons with disabilities are able to exercise their legal capacity by providing support when needed.114 It is clear that the optimal condition for making choices is when persons with disabilities live independently in the community, as provided for in article 19. The less desirable condition is when they live in institutional or congregate care, controlled by others and by regulations that restrict their legal capacity. Articles 12 and 19 CRPD go hand-in-hand and progress in one area positively affects the other. Challenging institutionalization is thus interwoven with challenging the legitimacy of guardianship and developing alternative models for supported decisions. Article 19 is interdependent with 8 (awareness raising), as the latter assumes that society, and particularly states, must remove attitudinal barriers and ‘nurture receptiveness to the rights of persons with disabilities’. This is highly unlikely to happen when people with disabilities are institutionalized or living in congregate care remotely from society. Social inclusion and connectedness cannot exist in such excluded settings. Interestingly, although articles 19 and 8 reflect positive logic and language, the assumption is that awareness and openness toward people with disabilities cannot exist in segregated settings. It is clear that any de-institutionalization policy must be based on societal receptiveness and attitudinal change toward inclusion. Accessibility (article 9) in a broad sense is a precondition to inclusion. The Convention innovates by crafting various accessibility and participation rights in a variety of spheres including the economic, social, cultural, and indeed political. It goes without saying that the right to be included in the community cannot fully be achieved unless access and other barriers to and in the community are removed. There are two additional articles (28 and 29) that are linked indirectly to article 19. Article 28 standard of living and social protection is crucial to independent living, in particular its references to the need to ensure access to poverty reduction schemes and assistance with disability-related expenses. The same applies to article 29 focusing on participation in political and public life.
3.4 The Israeli Panel of Experts Paradigm One of the efforts to implement article 19 has occurred in Israel through the constitution of the International Panel of Experts.115 Its findings are probably one of the earliest reports of the twenty-first century that are based on the CRPD, particularly articles 12 and 112 Article 3a states: ‘Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons.’. 113 Article 12(2) of the UNCRPD states: ‘States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.’ 114 Article 12(3) of the UNCRPD. 115 Peter Blanck, Mindert Haveman, Joel M. Levy, Gerard Quinn, Arie Rimmerman, and Michal Soffer, ‘Integrated Community Living for People with Intellectual Disabilities (ID) in Israel: Final Report of an International Committee of Experts’—submitted to the Israeli Ministry of Social Affairs and Social Services in 2011.
fiala-butora, rimmerman, and gur
544
Living Independently and Being Included in the Community
19, in transitioning from institutionalization to community living policy.116 International experts noted that Israeli policy entailed a mixture of institutional and community care, on the basis of which substantial resources were allocated to support congregate and institutional care. Articles 12 and 19, together with articles 8 and 16 CRPD, paved the desired policy direction toward the human rights model of services, focusing on personalization, choices, and supported decisions. The adoption of the Panel is interesting because it is unusual for a panel of international experts to be mandated to review current policy and practice and offer proposals for a desired transitional change from congregate and institutional care to community living policy. The merit of using a balanced and impartial panel of experts is evident in particular in a highly debatable area of community care. The experts provided a comprehensive report as well as detailed recommendations for policy changes to the Ministry of Labour and Social Affairs (MOLSA). The Israeli panel report addressed five core questions. Each of these is analysed below in this section: Q1: What are the various residential options for people with intellectual disability (ID) in other relevant countries? And, how does Israel stand in comparison to these countries? In other words, what is the appropriate standard for residential facilities? The panel estimated that Israel was in the midst of a slow transitional phase from an institutional-based model of care to a community-based model of care. The panel assumed that the process of moving from an institutional-based approach and the development of integrated community living in Israel was slow, but not necessarily slower compared to many other European countries. Compared with the US, however, there were significant differences. The recommendation to the Israeli government was as follow: • The state should build on its positive track record to date in the disability field to set itself the goal of becoming a world leader with respect to the right to live independently and be included in the community. • The state should change laws and regulations so that community-based housing and services became the clearly preferred and mainstream policy option. • The state should change legal capacity legislation (and a publicly announced policy of interpreting existing legislation expansively) to ensure that persons with ID are given an equal right to express their own preferences and to have others respect their choices. • The state should have a comprehensive ten-year transitional-program of designing and developing community infrastructure and services. • Parallel to these developments, the state should close down large residences (‘institutions’), and persons who resided in such housing arrangements should be gradually transferred to community-based residences. It is important to consider elderly persons in such facilities that had been living there most of their lives and, consequently, view these as their homes. • The state should map all community-based services in Israel in order to design future quality services that would be provided to all Israeli citizens with ID, no matter where they choose to live. Q2: Should Israel regulate the location of residences (zoning) for people with ID? In response to this question, members of the panel of experts thought that zoning stemmed from poor planning and non-unified community infrastructures. Some of the 116 The panel report is reviewed in a forthcoming chapter by Arie Rimmerman and Michal Soffer, ‘The Making of Disability Policy in Israel: Ad-hoc Advisory Experts Panels,’ in Gila Menahem and Amos Zehavi (eds), Policy Analysis in Israel (Policy Press 2016) 109–20.
fiala-butora, rimmerman, and gur
Article 19
545
communities became extremely saturated with community-based housing while others lacked sufficient housing. The members of the panel thus recommended that the state of Israel should promote integrated community residential services on the principles of equality and social equity. Such planning should seek to erode attitudinal barriers by ensuring that the community at large was primed to see the person behind the label. It was equally recommended that planning should be based on a systematic mapping of the existing services in Israel. Planning of future residential services should be comprehensive, flexible and consider all types of housing for persons with ID. Apartments and other housing arrangements should be close to the family and community of the person, and the buildings should allow ageing in place. In order to overcome the lack of planning, it was recommended that the Israeli government should consider granting certifications or authorization on the basis of state-wide needs. As many of the individuals with ID in the large institutions did not live close to their families, and as the national distribution of service planning should be based on principles of equity and equality, macro-planning was needed rather than leaving matters to be decided by local municipalities and communities, as is the current situation. It was recommended that the government should provide incentives to service providers to open services in places where they were needed. Q3: What should be the services provided to families in the community? The state had adopted a ‘program-centred’ rather than a ‘person-centred’ model of services. Therefore, in responding to this question, the panel recommended that service budgets should be individualized, that is, delivered services should be grounded on personal choice, will, and needs of the individual and his or her family. Services for adults with ID should become person-centred and the services for children family-centred. This, of course, implies a new approach to legal capacity of persons with ID. Furthermore, community services that were opened to the public at large would have to be modified to make them accessible to persons with disabilities in the community. This would not happen overnight, but requires proper foresight, planning, and a gradual shift of resources. Q4: What should the State of Israel do with large residences (institutions) for people with ID? The panel recommended complete closure of institutions, as follows: all large institutions would be scaled down and eventually closed. It is of note that members of the panel expressed two different interpretations as to the number of residents that define such institutions. One view argued that large residences included ‘more than six individuals’, while the other stressed that large residences consisted of ‘more than four individuals’. Nonetheless, all members of the panel agreed that community-based residential services should be quality services, such that promote community inclusion and facilitate choice and self-determination. Residential settings should be located nearby public transportation, shops, and community services. Community-based services should be small in order to minimize attitudinal barriers in the community. Q5: How may Israel be ten years from now? The panel considered that a paradigm shift for people with disabilities has been and is underway, as reflected in the CRPD as well as scientific evidence supporting living independently in the community. This perspective was essential for the quality of service delivery for persons with ID and hence should be reflected in Israel’s future policy. In fiala-butora, rimmerman, and gur
546
Living Independently and Being Included in the Community
summary, the panel recommended that Israel may appropriately follow in the footsteps of other Western countries117 and shift its current policy concerning housing for persons with ID towards community-based services with an emphasis on inclusion and integration. Accordingly, all persons with ID may live in the community with appropriate supports. This major transition should be carefully planned and prepared and then implemented with appropriate oversight: • Large facilities (as defined above) might be informed partners in the process and asked to deliver a plan for implementing the transition into the community; the staff and managers should be trained and educated, parents and consumers should be involved and prepared by information in the planning process. Persons with ID must be active participants and prepared to live in the community. The state should initiate adult education programs of person-centered planning for adults with ID. Providing them with basic information on rights and training in decision making in daily life can be very helpful. Life skills needed for living independently in the community should be not only taught in educational settings but ‘in vivo’, in realistic environments and with support. • As part of the transitional phase, the state should offer programs to reduce the negative behaviors that could cause problems in the community. • The general and specific goals in the planning process should be operationalized in measurable objectives and with time limits, which could be monitored and evaluated. • Incentives should be provided to service providers of segregated residential care to become community-based service providers, leaders, and social innovators. Budgets for large housing facilities should not be raised. • Additional community services need to be developed in order to facilitate the transition; changes to current services should be made with an emphasis on quality. All community services may be varied to support personal choice and individual preferences. • Supports and assistance should be provided to individuals to exercise their choices. These should be designed and adjusted in partnership with consumers. The roadmap suggested by the panel consisted of the following: • Within ten years, all large residential facilities (segregated housing with more than four or six) should be closed permanently in Israel. • During this decade, all residents would be transitioned to a small community-based living arrangement of their choice and with appropriate supports. • Such residences, if not individual, would house no more than four or six, and primarily on a mixed basis of disabled and non-disabled residents (not their carers). • A planning committee with subcommittees, comprised of all relevant stakeholders (for instance, people with disabilities and their families and advocates, providers, experts, members of government agencies) must meet annually to assist in the transition and planning. • A Monitoring and Evaluation Team (MET) could assist the planning process and assist the above-mentioned meetings with comprehensive and valid information. 117 eg Ireland; it is highly recommended to read the following report as it provides an in-depth analysis and a detailed working plan devised for seven years during which all institutions in Ireland will be closed: Health Service Executive, Time to move on from congregated settings: A strategy for community inclusion. Report of the Working Group on Congregated Settings (2011), available from: .
fiala-butora, rimmerman, and gur
Article 19
547
4. Paragraph (a) Paragraph (a) requires states parties to ensure that persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis. Therefore, it is partially based on article 12, namely the right to exercise legal capacity that underpins the right to live independently in the community and vice versa.118 Incapacitation is one of the key violations of exercising choice under paragraph (a).119 Conversely, ensuring the right to legal capacity is one of the core obligations of states parties under article 19 according to General comment no 5.120 Unfortunately, many central and eastern European countries impose restrictive guardianship schemes that prevent people from making personal decisions in a wide range of areas, including the right to where and with whom to live.121 The Czech Supreme Administrative Court in 2014 recognized that children with disabilities have an enforceable right to receive social services and live with their families in the community. This is the first time that a domestic court in central Europe relied on article 19 CRPD to ensure this right. The case involved three young boys (David, Stephan, and Miroslav) that suffer from autism spectrum disorder (ASD), intellectual disabilities, and behavioural issues. The parents, who lived in the southern part of the country (Ceske Budejovice), asked the local authorities to provide services at home but were denied and were instead offered placement in institutions. The families refused and contracted the Czech Public Defender of Rights who failed to have the decision cancelled. The families then submitted a complaint to the Supreme Administrative Court, arguing a violation of the right to live independently under article 19 CRPD122 and were successful in having the Supreme Administrative Court reverse the decision of the lower court. It found that the regional authority and the lower court had failed to take into account their obligations under international law. The Supreme Administrative Court also found that Czech law must be interpreted in line with the European Social Charter and the general comments of the UN Committee on Economic, Social and Culture Rights (CESCR).123 The CRPD Committee has identified a number of practices apart from incapacitation that can limit the choice of persons with disabilities under paragraph (a). State institutions can directly refer persons to institutional care,124 or even forcibly relocate them to institutions.125 Residents can be obliged to live in institutions if that is the condition for 118 See draft general comment on Article 12 prepared on 25 November 2013, pursuant to Rule 47, paragraphs 1 and 2 of the Committee’s Rules of Procedure (CRPD/C/4/2) and paragraph 54 of the Committee’s Working Methods (CRPD/C/5/4). 119 120 CRPD General comment no 5 (n 8) para 26. ibid para 38. 121 Open Society Foundations, A Community for All: Implementing Article 19 (2011), available at: . The ‘Community for All’ guide and checklist were developed as part of a project of the Mental Health Initiative and the Law and Health Initiative of the Open Society Public Health Program. They offer a detailed look at the rights identified in the UNCRPD, especially article 19 which provides for the right to live independently and be included in the community. 122 The Czech Republic ratified the UNCRPD in 2009, thereby accepting a binding obligation under international law to ensure that all persons with disabilities are supported in the community, including children. 123 Mental disability advocacy centre, ‘Czech Supreme Court enforces legal right for children with disabilities to live in the community’ (2014), available at: . 124 CRPD Committee, Concluding Observations: Belgium UN Doc CRPD/C/BEL/CO/1 (28 October 2014) para 32. 125 CRPD Committee, Concluding Observations: Denmark UN Doc CRPD/C/DNK/CO/1 (30 October 2014) para 42.
fiala-butora, rimmerman, and gur
548
Living Independently and Being Included in the Community
receiving disability support.126 Sometimes they are not directly forced to live in an institution, but that is their only option offered by the state.127 The state can also inhibit choice by suppressing the development of alternatives to institutions by the private and non- profit sector through overcomplicated licensing processes, advantaging residential institutions.128 If complex cultural, social, and environmental challenges prevent persons with disabilities to enjoy their right to independent living, the state’s role is to overcome these challenges rather than stay inactive.129 Individual choice must also not be limited to the place of residence, but includes all aspects of a person’s living arrangements, such as daily schedule, routine, and lifestyle.130 Persons with disabilities must enjoy meaningful set of options to choose from, otherwise they cannot exercise choice as required by article 19.131 The CRPD Committee has found a number of practices that isolate persons with disabilities to be contrary to the requirements of article 19. Persons with intellectual and psychosocial disabilities,132 albinos,133 and persons suffering from leprosy134 were all found to be subject to specific exclusionary practices in some of the states parties. The Committee was particularly concerned about the institutionalization of children135 and specifically of children under the age of three136 and children with intellectual and psychosocial impairments,137 or children with severe disabilities.138 General comment no 5 stresses that article 19 applies to all persons with disabilities, ‘regardless of their level of intellectual capacity, self-functioning or support requirements’.139 States parties cannot escape their obligations by arguing that certain persons are ‘unable’ to live independently, or that their support would be ‘too costly’.140 Although it is not specified, article 19 rejects institutions and segregated places, primarily because these facilities enforce control over day-to-day decisions and are insensitive to a person’s personal preferences.141 General comment no 5 stresses that institutions are not defined by their size, but by certain defining element which lead to residents 126 CRPD Committee, Concluding Observations: Australia UN Doc CRPD/C/AUS/CO/1 (21 October 2013) para 41. 127 CRPD Committee, Concluding Observations: New Zealand UN Doc CRPD/C/NZL/CO/1 (31 October 2014) para 39. 128 CRPD Committee, Concluding Observations: Serbia UN Doc CRPD/ C/ SRB/ CO/ 1 (23 May 2016) para 39. 129 CRPD Committee, Concluding Observations: United Arab Emirates UN Doc CRPD/C/ARE/CO/1 (3 October 2016) para 37. 130 131 CRPD General comment no 5 (n 8) para 24. ibid para 25. 132 CRPD Committee, Concluding Observations: Ukraine UN Doc CRPD/C/UKR/CO/1 (2 October 2015) para 36. 133 CRPD Committee, Concluding Observations: Uganda UN Doc CRPD/C/UGA/CO/1 (12 May 2016) para 38. 134 CRPD Committee, Concluding Observations: China UN Doc CRPD/C/CHN/CO/1 (15 October 2012) para 31. 135 CRPD Committee, Concluding Observations: Mauritius UN Doc CRPD/ C/ MUS/ CO/ 1 (30 September 2015) para 31. 136 CRPD Committee, Concluding Observations: Lithuania UN Doc CRPD/C/LTU/CO/1 (11 May 2016) para 39. 137 CRPD Committee, Concluding Observations: El Salvador UN Doc CRPD/C/SLV/CO/1 (8 October 2013) para 42. 138 CRPD Committee, Concluding Observations: Dominican Republic, UN Doc CRPD/C/DOM/CO/1 (8 May 2015) para 38. 139 140 CRPD General comment no. 5 (n 8), para 21. ibid. 141 See Arie Rimmerman, ‘The Paradigm Shift of Article 12 and 19 of the UN Convention of Rights of Persons with Disabilities’ in Arie Rimmerman, Disability and Community Living Policies (New York: Cambridge University Press, forthcoming).
fiala-butora, rimmerman, and gur
Article 19
549
losing personal choice and autonomy as a result of the imposition of certain life and living arrangements.142 By shifting people with intellectual and mental disabilities from institutional to community-based housing, they can reclaim control over their lives and make personal choices. The CRPD Committee identified several types of facilities that can constitute institutions that are not in compliance with the requirements of article 19. The traditional residential institutions for persons with disabilities143 or psychiatric institutions144 are ubiquitous in states parties, sometimes hosting up to 2,000 residents.145 Persons with disabilities can, however, also be segregated in hospitals and psychiatric hospitals,146 half-way homes, and rehabilitation centres,147 the isolated neighbourhoods or ‘cités’ of Gabon,148 the ‘centres de sauvegarde’ set up for children with disabilities in Mauritius,149 the leper colonies of China,150 shelters for homeless persons,151 foster homes for adults,152 or residential facilities for the elderly.153 The existence of these facilities is not always problematic in and of themselves. Article 19 (a) is engaged when persons with disabilities end up in them against their will, for example because it is their only option.154 However, some facilities, such as the large segregated social care homes for persons with disabilities, violate the requirements of article 19 through their mere existence, regardless of how their residents ended up there, and should be closed immediately.155 Although most institutions are state run, the CRPD Committee made clear that states parties are also responsible for segregation in private institutions,156 including private shelters157 and day-care centres.158 The state can violate article 19 through the absence of CRPD General comment no 5 (n 8) para 16. CRPD Committee, Concluding Observations: Belgium UN Doc CRPD/C/BEL/CO/1 (28 October 2014) para 32. 144 CRPD Committee, Concluding Observations: Azerbaijan UN Doc CRPD/C/AZE/CO/1 (12 May 2014) para 32. 145 CRPD Committee, Concluding Observations: China UN Doc CRPD/C/CHN/CO/1 (15 October 2012) para 31. 146 CRPD Committee, Concluding Observations: Paraguay UN Doc CRPD/C/PRY/CO/1 (15 May 2013) para 47. 147 CRPD Committee, Concluding Observations: Thailand UN Doc CRPD/C/THA/CO/1 (12 May 2016) para 39. 148 CRPD Committee, Concluding Observations: Gabon UN Doc CRPD/C/GAB/CO/1 (2 October 2015) para 44. 149 CRPD Committee, Concluding Observations: Mauritius UN Doc CRPD/ C/ MUS/ CO/ 1 (30 September 2015) para 31. 150 CRPD Committee, Concluding Observations: China UN Doc CRPD/C/CHN/CO/1 (15 October 2012) para 31. 151 CRPD Committee, Concluding Observations: Paraguay UN Doc CRPD/C/PRY/CO/1 (15 May 2013) para 47. 152 CRPD Committee, Concluding Observations: Croatia UN Doc CRPD/ C/ HRV/ CO/ 1 (15 May 2015) para 29. 153 CRPD Committee, Concluding Observations: New Zealand UN Doc CRPD/C/NZL/CO/1 (31 October 2014) para 39. 154 CRPD Committee, Concluding Observations: New Zealand UN Doc CRPD/C/NZL/CO/1 (31 October 2014) para 39. 155 CRPD Committee, Concluding Observations: China UN Doc CRPD/C/CHN/CO/1 (15 October 2012) para 32. 156 CRPD Committee, Concluding Observations: Croatia UN Doc CRPD/ C/ HRV/ CO/ 1 (15 May 2015) para 29. 157 CRPD Committee, Concluding Observations: Costa Rica UN Doc CRPD/C/CRI/CO/1 (12 May 2014) para 39. 158 CRPD Committee, Concluding Observations: Mauritius UN Doc CRPD/ C/ MUS/ CO/ 1 (30 September 2015) para 31. 142 143
fiala-butora, rimmerman, and gur
550
Living Independently and Being Included in the Community
state supervision and control over the building of private institutions,159 or by promoting their development. Denmark, for example, was criticized for offering state guarantees to loans enabling the building of private institutions and was asked to stop the practice.160 The CPRD Committee’s General comment clarifies that States Parties are required to ensure that neither public nor private funds are used to build or renovate institutions.161 Choice is definitely the heart of article 19 and independent living is rarely possible in institutions or congregate care facilities. These facilities often restrict choices or opportunities to make choices. Institutions tend to offer a fixed program without examining where and with whom the person would like to live. The CRPD Committee did not feel it necessary to explain why institutions are unacceptable, but in some cases called attention to some of the negative consequences of institutionalization. These include indefinite isolation,162 lack of care and psychological support163 and vulnerability to violence and abuse164 that can lead to cruel inhuman and degrading treatment.165 Loss of choice can happen also in congregate care but rarely in individualized support. However, the need to enable inclusion is also needed in the person’s home or supported individualized apartment. The Committee recognized that independent living can be violated even in the persons’ family home, if lack of services lead to segregation and being hidden in the family.166 This has important gendered consequences, as it is mostly women who are forced to take care of their family-members with disabilities, which limits their participation in the labour market,167 or leads to the abandonment of persons with disabilities.168 The need for support does not justify inhibiting or regulating people with disabilities in a way in which people without disabilities are not regulated. Choice has direct bearing on the way support is provided and is linked to the existence of options. These human rights and mental health care problems challenge the European human rights system, which has played a key role in driving the process of de-institutionalization across Europe. In the case of intellectual disabilities there has been growing recognition in Western Europe that de-institutionalization could not end just with institutional closure and downsizing, but had to be combined with building community-based services, social participation, and choices and control by people with disabilities.169 However, there are 159 CRPD Committee, Concluding Observations: Costa Rica UN Doc CRPD/C/CRI/CO/1 (12 May 2014) para 39. 160 CRPD Committee, Concluding Observations: Denmark UN Doc CRPD/C/DNK/CO/1 (30 October 2014) para 42. 161 CRPD General comment no 5 (n 8) para 51. 162 CRPD Committee, Concluding Observations: Guatemala UN Doc CRPD/C/GTM/CO/1 (30 September 2016) para 53. 163 CRPD Committee, Concluding Observations: Mauritius UN Doc CRPD/C/MUS/CO/1 (30 September 2015) para 31. 164 CRPD Committee, Concluding Observations: Austria UN Doc CRPD/C/AUT/CO/1 (30 September 2013) para 36. 165 CRPD Committee, Concluding Observations: Mauritius UN Doc CRPD/C/MUS/CO/1 (30 September 2015) para 31. 166 CRPD Committee, Concluding Observations: Gabon UN Doc CRPD/C/GAB/CO/1 (2 October 2015) para 44. 167 CRPD Committee, Concluding Observations: Italy UN Doc CRPD/C/ITA/CO/1 (6 October 2016) para 47. 168 CRPD Committee, Concluding Observations: Gabon UN Doc CRPD/C/GAB/CO/1 (2 October 2015) para 44. 169 Valerie J Bradley and James Knoll, Shifting Paradigms in Services to People with disabilities (Cambridge, MA: Human Services Research Institute 1991).
fiala-butora, rimmerman, and gur
Article 19
551
differences in de-institutionalization policies among European countries. Nordic states adopted earlier the normalization principle which led them to de-institutionalization and community living legislation and policy.170 The United Kingdom adopted de- institutionalization and community living policies, but at a slower pace.171 Other countries are still caught up in a mixed model of institutions and community care, particularly eastern European countries that have a substantial number of institutional care facilities. At the same time as the aforementioned developments occurred in the EU, the United States experienced a dramatic reduction of people with psychiatric disabilities in institutions and hospitals. However, compared to the rate of de-institutionalization in Western Europe, the de-institutionalization process in the United States has been portrayed as problematic if not a failure in offering sufficient community-based services. The result was increased numbers of people who became homeless or were placed in jails and prisons.172 In fact, the number of individuals with serious mental illness in prisons and jails recently exceeded tenfold the number in state psychiatric hospitals. The picture in the United States is much more complex and the process more gradual than in Europe. The major catalyst for institutional closure was a series of class action lawsuits and increasingly growing protests against the inhuman conditions and practices and the poor treatment of patients in these institutions.173 These important and significant developments increased awareness of alternative care options, and in particular for those residents who were capable of living in the community. The 1970s brought an additional challenge: to eliminate the unnecessary institutionalization of people with developmental disabilities who are capable of living in their own communities. It appears that the reasons for the differences between the United States and Europe are conceptual and reflect political views of human rights and social policy. Even as there are many different conceptions of welfare in Europe, there is more inclination among members to lean toward greater responsibility of states in providing and promoting human and social welfare of their peoples. By comparison, the United States Constitution focuses on the idea of individual freedom, and views the state’s primary role as that of providing the conditions for the individual’s pursuit of freedom rather than promoting or supporting any particular conception of welfare or equality.174 It is clear that the two differ in their disability policy: the European path reflects welfare policy first and anti- discrimination law second,175 while the United States relies solely on antidiscrimination legislation. The European approach is also different in terms of its political system; it is fairly diffuse, highly technocratic, regulated, and leans toward the consensual mode and
170 See Jan Tøssebro et al, ‘Normalization Fifty Years Beyond—Current Trends in the Nordic countries’ Journal of Policy and Practice in Intellectual Disabilities 9 (2012) 134–46. 171 Eric Emerson, ‘Deinstitutionalization in England’ Journal of Intellectual and Developmental Disability 29 (2004) 79–84; doi:10.1080/13668250410001662838. 172 E Fuller Torrey et al, ‘More Mentally Ill Persons Are in Jails and Prisons than Hospitals’ Treatment Advocacy Center (May 2010). 173 Mary Beth Musumeci and Henry Claypool, ‘Olmstead’s Role in Community Integration for People with Disabilities under Medicaid: 15 Years after the Supreme Court’s Olmstead Decision’ The Kaiser Commission on Medicaid and the Uninsured June 2014. 174 Arie Rimmerman, Disability and Community Living Policies (New York: Cambridge University Press 2017), Closing Remarks. 175 It seems that European Union antidiscrimination law is a fairly recent development, influenced by recent ECtHR case law on discrimination.
fiala-butora, rimmerman, and gur
552
Living Independently and Being Included in the Community
integration rather than being disputed politically.176 Therefore, anti-discrimination legislation is considered to be less relevant in solving human rights and social issues.
5. Paragraph (b) Individualized support services under paragraph (b) are consonant with the right of people with disabilities to receive services at home in residential and other community support services, including personal assistance. They have to ‘support living and being included in the community’, and ‘to prevent isolation or segregation from the community’. The individualized support has to be chosen by the person and trimmed according to his or her needs and not necessarily to that offered by the provider.177 Among the most important services is personal assistance because it may boost choice and control over the support needed to live and be included in the community. This may require access to independent planning and facilitation services in order to help develop life plans for life in the community and pursue these plans, as well as access to advocacy services in order to navigate the system and protect one’s rights and interests. Personal assistance must be available to all who need it. National schemes excluding persons with psychosocial or intellectual disabilities are not compliant with the CRPD.178 The lack of community-based services is crucial for states’ compliance with article 19, as people with disabilities have limited choices regarding their place of residence. This is a major problem, particularly for countries that are dependent primarily on institutional and congregate care facilities.179 In these countries, there is also a lack of equal access to mainstream community services that limits the choice of residence. Although article 19 does not address deinstitutionalization, its text makes it clear that the closure of institutions is required, together with the development of community-based alternatives. Article 19 emphasizes full inclusion and participation in the community, which can only be achieved when there are no more institutions. As General comment no 5 makes clear, any support service provided by an institutional form, which segregates and limits personal autonomy, is not permitted by article 19(b).180 Countries in Europe differ in their community living legislation and policies, and therefore their response to article 19. For example, the United Kingdom and Italy adopted de-institutionalization and transition to community living in the second half of the twentieth century. In the United Kingdom, the creation of the National Health System (NHS) in 1948 and a favourable social and political climate led to the progressive closure 176 The European Court of Justice has been notably more reluctant to invalidate European Union legislative and other measures as compared with measures taken by member states, and has been accused of double standards in fashioning more aggressive and effective procedures for judicial review of member state acts than of European Union acts. See eg Ewa Biernat, ‘The Locus Standi of Private Applicants under Article 230 (4) EC and the Principle of Judicial Protection in the European Community’ Jean Monnet Working Paper (2003) 12/03. 177 CRPD General comment no 5 (n 8) para 28. 178 CRPD Committee, Concluding Observations: Austria UN Doc CRPD/C/AUT/CO/1 (30 September 2013) para 38. 179 See eg Jim Mansell, Martin Knapp, Julie Beadle-Brown, and Jeni Beecham, Deinstitutionalization and Community Living––Outcomes and Costs: Report of a European Study Vol 2: Main Report (Canterbury: Tizard Centre, University of Kent 2007) p 26. The authors estimated that nearly 1.2 million people were living in residential institutions for people with disabilities in EU member states. 180 CRPD General comment no 5 (n 8) para 30.
fiala-butora, rimmerman, and gur
Article 19
553
of old psychiatric hospitals. The change in Italy has been more radical, the Mariotti Law of 1968 and the Basaglia Law of 1978 prohibited all new admissions into psychiatric hospitals and denouncing hospitalization as a violation of human rights. The political system clearly plays a major role in supporting community care policies. The United Kingdom is an excellent example of a country with incremental change, whereas Italy presents a rapid change, reflected by disparities in implementation. Overall, in most European countries, the development of community services is a complex process that faces several important barriers. Some of these barriers are related to policy and may occur where there is a lack of adequate mental health policies and legislation, budgets are insufficient, or where there is procedural discrimination in terms of limited or lack of health insurance. Other barriers are associated with difficulties faced by health systems in reallocating resources from the large institutions to community-based services, lack of integration of mental health services into the general health system, and poor coordination with housing, welfare, and employment services. Therefore, the World Health Report of the WHO of 2001181 suggested that European countries promote new knowledge, understanding, and concomitant solutions, including a range of policy options at the service of governments and policy makers. The report assumed that there were no simple solutions, thus governments were encouraged to make strategic decisions and choices that would bring positive changes in the acceptance and treatment of mental and behavioural disorders. They would need to develop policy and to establish norms and standards that protect public health. This would include defining the respective roles of the public and private sectors in financing and provision of services and identifying policy instruments and organizational arrangements required in the public and private sectors to meet mental health objectives. The CRPD Committee identified other forms of services, besides personal assistance, which must be provided by states parties to facilitate independent living. Most important among these is sufficient financial assistance,182 which fosters economic independence of persons with disabilities. Financial assistance must be fair,183 taking into account the needs of various sub-categories of persons with disabilities. If the level of assistance is very low, as it is in Portugal, it is unable to prevent institutionalization of persons with disabilities, in which cases the state ends up using its funds ineffectively.184 States parties must be prepared to provide a range of other services as well, such as rehabilitation services,185 reintegration assistance,186 or affordable skin-care protection for persons with albinism in Uganda.187 General comment no 5 expands the list by adding that services must also be able to extend to the spheres of employment, education, or political and 181 See World Health Organization, World Health Report 2001, Mental Health: New Understanding, New Hope (2001). 182 CRPD Committee, Concluding Observations: Azerbaijan UN Doc CRPD/C/AZE/CO/1 (12 May 2014) para 33. 183 CRPD Committee, Concluding Observations: Republic of Korea UN Doc CRPD/C/KOR/CO/1 (29 October 2014) para 40. 184 CRPD Committee, Concluding Observations: Portugal UN Doc CRPD/ C/ PRT/ CO/ 1 (20 May 2016) para 38. 185 CRPD Committee, Concluding Observations: Argentina UN Doc CRPD/C/ARG/CO/1 (8 October 2012) para 34. 186 CRPD Committee, Concluding Observations: China UN Doc CRPD/C/CHN/CO/1 (15 October 2012) para 32. 187 CRPD Committee, Concluding Observations: Uganda UN Doc CRPD/C/UGA/CO/1 (12 May 2016) para 38.
fiala-butora, rimmerman, and gur
554
Living Independently and Being Included in the Community
cultural participation, support services empowering parenthood and the ability to attend family relatives and others, participation in political and cultural life, leisure interests and activities, and travel as well as recreation.188 States parties must provide the necessary personnel, such as therapists, social workers, and other relevant specialists for services to be provided effectively.189 General comment no 5 stresses that specialists must be both qualified and available in ‘sufficient numbers’.190 The basic obligation of states parties under article 19(b) is to prepare a national plan on the development of community-based services191 and implement it by allocating sufficient funding.192 Necessary services must be created, including in rural areas.193 The absence of allocated resources,194 their unequal geographical distribution and the slow remuneration process are all obstacles to the full enjoyment of the right to independent living.195 States parties must also make sure that local authorities are sufficiently involved in implementing the national scheme on including persons with disabilities in the community.196 The CRPD Committee was critical of schemes calculating fees paid by persons with disabilities for services on the basis of the ‘degree of impairment’, and recommended basing fees on the personal circumstances and needs of the person.197 If a recipient’s income in calculating fees is taken into account, it must be their personal income rather than the income of their families,198 so as to avoid dependence on family members. If states use vouchers to fund services, these must be paid directly to persons with disabilities rather than to their caretakers.199 The Committee was critical of waiting lists200 and excessive waiting times201 that limit accessibility to crucial services. Also, cut-backs in assistance, withdrawal of services, and lack of implementation of positive decisions to provide support are concerning under paragraph (b).202 CRPD General comment no 5 (n 8), para 29. CRPD Committee, Concluding Observations: Turkmenistan UN Doc CRPD/C/TKM/CO/1 (13 May 2015) para 34. 190 CRPD General comment no 5 (n 8) para 28. 191 CRPD Committee, Concluding Observations: Costa Rica UN Doc CRPD/C/CRI/CO/1 (12 May 2014) para 40. 192 CRPD Committee, Concluding Observations: Spain UN Doc CRPD/C/ESP/CO/1 (19 October 2011) para 39. 193 CRPD Committee, Concluding Observations: Spain UN Doc CRPD/C/ESP/CO/1 (19 October 2011) para 39. 194 CRPD Committee, Concluding Observations: Peru UN Doc CRPD/C/PER/CO/1 (16 May 2012) para 32. 195 CRPD Committee, Concluding Observations: Slovakia UN Doc CRPD/C/SVK/CO/1 (17 May 2016) para 55. 196 CRPD Committee, Concluding Observations: Paraguay UN Doc CRPD/C/PRY/CO/1 (15 May 2013) para 49. 197 CRPD Committee, Concluding Observations: Republic of Korea UN Doc CRPD/C/KOR/CO/1 (29 October 2014) para 39. 198 CRPD Committee, Concluding Observations: Republic of Korea UN Doc CRPD/C/KOR/CO/1 (29 October 2014) para 39. 199 CRPD Committee, Concluding Observations: Ecuador UN Doc CRPD/C/ECU/CO/1 (27 October 2014) para 34. 200 CRPD Committee, Concluding Observations: Belgium UN Doc CRPD/C/BEL/CO/1 (28 October 2014) para 33. 201 CRPD Committee, Concluding Observations: Lithuania UN Doc CRPD/C/LTU/CO/1 (11 May 2016) para 39. 202 CRPD Committee, Concluding Observations: Sweden UN Doc CRPD/ C/ SWE/ CO/ 1 (12 May 2014) para 43. 188 189
fiala-butora, rimmerman, and gur
Article 19
555
In H M v Sweden,203 the applicant, who suffered from a physical disability, required extensive hydrotherapy for her condition. She applied to the local municipality for a building permit to build a hydrotherapy pool next to her house. Her application was rejected, because the pool would be situated partly on land where building was not permitted according to the local zoning ordinance. The applicant submitted to the Committee that the rejection of the building permit violated her rights under articles 1, 2, 3, 4, 5, 9, 10, 14, 19, 20, 25, 26, and 28 of the CRPD. The CRPD Committee found in her favour under articles 5(1), 5(3), 19(b), 25, and 26, read alone and in conjunction with articles 3(b), (d), and (e), and 4(1)(d), not deeming it necessary to consider her complaint under the other articles. Under article 19, the Committee held that the domestic authorities failed to take into account the applicant’s specific circumstances, discriminating against her in the effects of their decision. If the pool was not built, the applicant would have to be transferred to a specialized healthcare institution for therapy. This would undermine her ability to live independently. The authorities had an obligation under article 19(b) to provide the applicant with the necessary services enabling her to enjoy the right to independent living. Hydrotherapy in her case can be considered a service falling under article 19(b). Rejecting her request to build the pool denied her access to hydrotherapy, violating her right to independent living. Services provided by states parties must be of sufficient quality and quantity to meet the requirements of paragraph (b).204 They must also be culturally appropriate to enable beneficiaries to choose their lifestyle:205 as General Comment no 5 stresses, article 19 requires that all persons with disabilities should be free to choose to be active and belonging to cultures of their own choice.206 Services must also contain a gender and age perspective to reflect the specific needs of children and the elderly, and of women and men.207 In the CRPD Committee’s view LGBTI persons with disabilities must enjoy equal protection under article 19 and therefore respect for their personal relationships.208
6. Paragraph (c) Article 19(c) requires states parties to ensure that community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs. The services have to allow them to enjoy all community rights, among them education, work, and transportation. It is clear that article 19(c) flows from the general principles of article 3, in particular those of full and effective participation and inclusion in society and of respect for difference and acceptance of persons with disabilities as part of human diversity. Building an inclusive community requires: (a) the 203 Committee on the Rights of Persons with Disabilities, Communication No 3/2011, H M v Sweden, CRPD/C/7/D/3/2011 21 May 2012. 204 CRPD Committee, Concluding Observations: Argentina UN Doc CRPD/C/ARG/CO/1 (8 October 2012) para 33. 205 CRPD Committee, Concluding Observations: Mexico UN Doc CRPD/C/MEX/CO/1 (27 October 2014) para 44. 206 CRPD General Comment no 5 (n 8) para 22. 207 CRPD Committee, Concluding Observations: Mexico UN Doc CRPD/C/MEX/CO/1 (27 October 2014) para 44. 208 CRPD General Comment no 5 (n 8), para 23.
fiala-butora, rimmerman, and gur
556
Living Independently and Being Included in the Community
removal of barriers; (b) systemic transformation of mainstream services in society; and (c) an inclusive process in which persons with disabilities are actively involved. The CRPD Committee identified a number of services that must be made available to persons with disabilities. These include education, health care, employment, and accommodation.209 Support must also be provided to families caring for children with disabilities210 to prevent family breakdown leading to institutionalization.211 The Committee also encouraged the creation of new services aimed at including persons with disabilities in local communities.212 General comment no 5 listed a wide range of services to which article 19(c) is available, such as public libraries, hospitals, schools, transport, shops, markets, museums, the Internet, social media, and similar facilities and services.213 The General comment stresses the importance of housing, without which article 19 could not be fulfilled.214 Persons with disabilities must have access to safe and adequate housing, which must be accessible and available in sufficient numbers, and affordable to persons with disabilities.215 States parties are required to build and retrofit barrier-free residential structures. Housing cannot be provided in specifically designated areas, or in such a way that forces persons with disabilities to congregate in the same building, complex, or neighbourhood.216 Service schemes must be comprehensive. Laws extending assistance to persons with disabilities for some purposes, such as education and work, while excluding other life activities, fall short of article 19(c).217 Similarly, limitations based on the degree of impairment are also not compatible with the CRPD.218 The Committee was particularly concerned about the situation of persons with psychosocial and intellectual disabilities, who in some countries lack essential services to live in the community.219 States parties must take efforts to enhance the availability, accessibility and inclusiveness of existing public services.220 They must provide reasonable accommodation221 to service-users with disability.222 This includes using effective communication devices, such as increasing the availability of sign language interpreters and fingerspelling systems in
209 CRPD Committee, Concluding Observations: Uganda UN Doc CRPD/C/UGA/CO/1 (12 May 2016) para 38. 210 CRPD Committee, Concluding Observations: Mauritius UN Doc CRPD/ C/ MUS/ CO/ 1 (30 September 2015) para 32. 211 CRPD Committee, Concluding Observations: Guatemala UN Doc CRPD/ C/ GTM/ CO/ 1 (30 September 2016) para 54. 212 CRPD Committee, Concluding Observations: Paraguay UN Doc CRPD/C/PRY/CO/1 (15 May 2013) para 50. 213 214 215 CRPD General comment no 5 (n 8) para 32. ibid para 34. ibid. 216 ibid. 217 CRPD Committee, Concluding Observations: Spain UN Doc CRPD/C/ESP/CO/1 (19 October 2011) para 41. 218 ibid. 219 CRPD Committee, Concluding Observations: Uganda UN Doc CRPD/C/UGA/CO/1 (12 May 2016) para 38. 220 CRPD Committee, Concluding Observations: Ethiopia UN Doc CRPD/C/ETH/CO/1 (4 November 2016) para 44. 221 CRPD Committee, Concluding Observations: Hungary UN Doc CRPD/C/HUN/CO/1 (22 October 2012) para 34. 222 CRPD Committee, Concluding Observations: Spain UN Doc CRPD/C/ESP/CO/1 (19 October 2011) para 41.
fiala-butora, rimmerman, and gur
Article 19
557
public services.223 If the services are means-tested, disability-related expenses must be taken into account in calculating fees and benefits.224 Of the two individual petitions submitted to the CRPD Committee, F v Austria225 raises some issues relating to paragraph (c), concerning access to live information on public transport services. The applicant, who was blind, complained that the recently extended tramline in Linz was not equipped with a digital audio system that would provide information to blind passengers about the tram service. He argued that this violated his rights under articles 2, 5, 9, 19, and 20 CRPD. The CRPD Committee found a violation of articles 5 (2), and 9 (1) and (2) (f ) and (h), because the applicant was unable to use the transportation services on an equal basis with others. However, it concluded that the applicant did not provide sufficient elements ‘to enable it to assess to which extent the lack of an audio system affects his right to . . . live independently’.226 Therefore the Committee could not establish a violation of article 19 in this case. It can be deduced from the two rulings (individual petitions) that for a violation of article 19 to take place, a sufficient connection must be shown between the person’s ability to live independently and the service or accommodation sought. In H M v Sweden the applicant established that the pool was essential for her continued living in her home, without which she would need to be transferred to an institution. In F v Austria, the applicant did not make the connection between his lack of ability to use the tramline on an equal basis with others and his ability to continue living independently. If he had shown that his lack of access to the tramline might force him to move to an institution, the Committee would have likely found a violation of article 19. Article 19 emphasizes the importance of informal networks in building an inclusive society, particularly, the role of family, friends, neighbours, peers, and others in creating the proper climate and support. Regardless of the nature of informal networks, article 19 requires that persons with disabilities exercise full decision-making abilities, with the network playing a supportive role. The provision of access to personal assistants for persons with intellectual and psychosocial disabilities is essential to moving from a medical to a social approach concerning mental health issues with respect to personal autonomy. Article 19 CRPD posits an optimistic view of ‘living in the community, with choices equal to others’, and ‘full inclusion and participation in the community,’ against the inverse, which is ‘isolation or segregation from the community’. The right to live in the community is considered more valuable than the right not to live in a large institution.227
223 CRPD Committee, Concluding Observations: Portugal UN Doc CRPD/ C/ PRT/ CO/ 1 (20 May 2016) para 38. 224 CRPD Committee, Concluding Observations: Germany UN Doc CRPD/C/DEU/CO/1 (13 May 2015) para 41. 225 Committee on the Rights of Persons with Disabilities, Communication No 21/2014 F v Austria CRPD/ C/14/D/21/2014 21 September 2015. 226 ibid para 8.8. 227 See eg Council of Europe Commissioner for Human Rights, The right of people with disabilities to live independently and be included in the community (June 2012), available at: (accessed 1 January 2017). The issue paper traces the right to live in the community to its origins in the most fundamental human rights standards both within the Council of Europe and United Nations systems. It draws on article 19 of the UNCRPD to identify the various forms of violation and provides guidance on community-based responses governed by choice and on achieving inclusion and participation. The paper shows the link between the right
fiala-butora, rimmerman, and gur
558
Living Independently and Being Included in the Community
People with disabilities may be isolated in various ways, even when physically present in the community, if they are not provided with sufficient supports to ensure their participation and inclusion in the community or are subject to models of support that perpetuate loss of control, impose restrictions on choice, and provide limited or no meaningful access to the community.
to live in the community and other rights, notably the right to equal recognition before the law (legal capacity), which is necessary to ensure an individual’s choice of where and with whom to live, as opposed to such choice being exercised by a person or entity acting as the individual’s guardian.
fiala-butora, rimmerman, and gur
Article 20 Personal Mobility States Parties shall take effective measures to ensure personal mobility with the greatest possible independence for persons with disabilities, including by: (a) Facilitating the personal mobility of persons with disabilities in the manner and at the time of their choice, and at affordable cost; (b) Facilitating access by persons with disabilities to quality mobility aids, devices, assistive technologies and forms
of live assistance and intermediaries, including by making them available at affordable cost; (c) Providing training in mobility skills to persons with disabilities and to specialist staff working with persons with disabilities; (d) Encouraging entities that produce mobility aids, devices and assistive technologies to take into account all aspects of mobility for persons with disabilities.
1. Introduction 2. Background and Travaux Préparatoires 2.1 Inter relationship between Article 20 and other CRPD Articles 3. Paragraph 1 3.1 Effective Measures 3.2 Personal Mobility 3.3 Greatest Possible Independence 4. Paragraph (a) 4.1 Affordable Cost 5. Paragraph (b) 5.1 Quality 5.2 Mobility Aids, Devices, Assistive Technologies 5.3 Live Assistance 5.4 Intermediaries 5.5 Affordable Cost 6. Paragraph (c) 7. Paragraph (d)
559 561 567 567 568 569 569 569 572 572 572 573 576 578 579 580 581
1. Introduction Personal mobility is a prerequisite for inclusion in a society.1 One can hardly underestimate the importance of being able and free to move to wherever one would like for the 1 Holger Kallehauge, ‘General Themes Relevant to the Implementation of the UN Disability Convention into Domestic Law: Who Is Responsible for the Implementation and How Should it Be Performed?’ in Oddny M Arnardóttir and Gerard Quinn (eds), The UN Convention on the Rights of Persons with Disabilities: European and Scandinavian Perspectives (Martinus Nijhoff 2009) 209.
kovudhikulrungsri and hendriks
560
Personal Mobility
enjoyment of human rights. To be mobile and to have access to transport, housing, cultural activities, and leisure is for everybody, according to the European Court of Human Rights (ECtHR), a precondition for the ‘right to establish and develop relations with other human beings’,2 ‘in professional or business contexts as in others’.3 The ECtHR thus acknowledged the direct link between mobility and such general principles as participation and inclusion (article 3 CRPD). From the case-law of this Court it moreover becomes clear that being unable to move or being prevented from moving independently may lead to a situation in which a person is being deprived from education4 and cannot make use of such civil and political rights as the right to vote.5 In fact, individuals finding themselves in an environment that does not take into account their mobility needs may be exposed to forms of inhuman and degrading treatment, according to the ECtHR.6 The critical feature of personal mobility towards persons with disabilities (PWDs) lies thus in both social and economic aspects7 and may also have implications for the enjoyment of civil and political rights. Even though the ECtHR was arguably the first international human rights court to acknowledge the importance of mobility for PWDs, it always left states parties with a wide margin of appreciation when taking into account mobility needs in relation to the regulation of other rights and interests. In the Botta case the ECtHR observed that there was no direct and immediate link between the measures sought by Mr Botta, who wanted to have access to the beach and his private and/or family life.8 And in the case of Zehnalová and Zehnal the Court held that the right to the enjoyment of private life, as protected by article 8 of the European Convention on Human Rights (ECHR), could only be applied ‘in the exceptional cases in which the lack of access to an establishment interfered with [the applicant’s] right to personal development and her right to establish and maintain relations with other human beings and the outside world’.9 And in the case of McDonald the ECtHR observed that the decision to reduce the care package of a person with severely limited mobility can pursue a legitimate aim, namely the economic well-being of the state and the interests of the other care-users, and can also otherwise be in accordance with the law, proportionate and necessary in a democratic society.10 Even though the CRPD does not establish new rights for PWDs but is merely thought to identify specific actions that states and others must take to ensure the effectiveness and inclusiveness of all human rights and to protect against discrimination on the basis of disability,11 there is no equivalent of the right to personal mobility in any other human rights treaty. That fact alone makes it particularly interesting to examine the genesis and meaning of this provision. Niemietz v Germany (1992) 16 EHRR 97 para 29. Burghartz v Schwitzerland (1994) 18 EHRR 101 para 24. 4 Gherghina v Romania (2015) 61 EHRR SE15. 5 Sitaropoulos and Giakoumopoulos v Greece (2013) 56 EHRR 9. 6 Price v the United Kingdom (2002) 34 EHRR 53. 7 United Nations, Ad Hoc Committee, Sixth Ad Hoc Committee Daily Summaries (5 August 2005), available at: (accessed 1 March 2017). 8 Botta v Italy Appl no 21439/93 (ECtHR 15 October 1996). 9 Zehnalová and Zehnal v Czech Republic (Dec) Appl no 38621/97 (ECtHR 14 May 2002). 10 McDonald v the United Kingdom Appl no 4241/12 (ECtHR 20 May 2014). 11 Ulrike Buschbacher Connelly, ‘Disability Rights in Cambodia: Using the Convention on the Rights of People with Disabilities to Expose Human Rights Violations’ (2009) 18 Pac Rim L & Pol’y J 123, 128; Michael Ashley Stein and Janet E Lord, ‘Future Prospects for the United Nations Convention on the Rights of Persons with Disabilities’, in Oddny M Arnardóttir and Gerard Quinn (eds), The UN Convention on the Rights of Persons with Disabilities: European and Scandinavian Perspectives (Martinus Nijhoff 2009) 30. 2 3
kovudhikulrungsri and hendriks
Article 20
561
2. Background and Travaux Préparatoires In the absence of a provision on personal mobility in other human rights treaties, the drafters of the CRPD could not model a provision on personal mobility after an existing text. This may explain why a separate discussion on personal mobility only emerged at the third session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities (Ad Hoc Committee), and was continued during the sixth and seventh sessions. These discussions largely revolved around the alleged overlap between personal mobility and other human rights such as accessibility, liberty of movement, and the right to live independently as well as the preferred terminology. The Working Group, mandated by the Ad Hoc Committee, prepared a text on personal mobility with the aim of serving as a basis for discussion in the Ad Hoc Committee and consequently submitted the following draft text to the Ad Hoc Committee: Article 20 Personal mobility States Parties to this Convention shall take effective measures to ensure liberty of movement with the greatest possible independence for persons with disabilities, including: (a) Facilitating access by persons with disabilities to high-quality mobility aids, devices, assistive technologies and forms of live assistance and intermediaries, including by making them available at affordable cost; (b) Promoting universal design for mobility aids, devices and assistive technologies and encouraging private entities which produce these to take into account all aspects of mobility for persons with disabilities; (c) Undertaking and promoting research, development and production of new mobility aids, devices and assistive technologies; (d) Providing training in mobility skills to persons with disabilities and to specialist staff working with persons with disabilities; (e) Facilitating the freedom of movement of persons with disabilities in the manner and at the time of their choice, and at affordable cost; (f ) Providing information to persons with disabilities about mobility aids, devices, assistive technologies and other forms of assistance and services; (g) Promoting awareness about mobility issues for persons with disabilities.12
New Zealand noted that the formulation of article 20 of the Working Group text resembled the provision on accessibility. New Zealand, therefore, held the view that article 20 should be deleted entirely and its elements transferred in other draft articles.13 As a result, there was a discussion whether to merge or retain personal mobility as a separate provision. From the discussion it became clear that accessibility differs from personal mobility in that it deals with the environment in the broadest sense, while personal mobility, as a term of art, focuses on the individual.14 The example raised by India appropriately
12 United Nations, Report of the Working Group to the Ad Hoc Committee UN Doc A/AC265/2004/ WG 1 (27 January 2004). 13 United Nations, Ad Hoc Committee, Daily Summary of Discussions related to Article 20 Personal Mobility (1 June 2004), available at: . 14 United Nations, Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its sixth session UN Doc A/60/266 (17 August 2005) para 73; United Nations, Ad Hoc Committee, Daily Summary
kovudhikulrungsri and hendriks
562
Personal Mobility
illustrates this: the provision of a wheelchair ensures personal mobility, while the construction of a ramp in a building falls under accessibility.15 This connection between personal mobility and the accessibility of the human environment was elaborated during the third session of the Ad Hoc Committee by Ireland, Japan, and Liechtenstein.16 Ireland even proposed to delete subparagraphs (b) and (c) since these were already part of the article on accessibility.17 As a consequence of these debates, the primary focus in the sixth session was on whether to merge the articles on accessibility and personal mobility, or not. Mexico, Jordan, Jamaica, and Chile suggested moving overlapping elements to the article on accessibility.18 Yemen raised the question of differentiating these two concepts and did not object to moving aspects of mobility to other articles, while also asking whether personal mobility is a means of access or merely the means of mobility.19 Yemen’s point of view was that article 20 CRPD addressed the means for applying what had been covered in the article on accessibility. Therefore, Yemen would not object to moving personal mobility issues to other articles.20 Conversely, Mali, Canada, and the Korea Solidarity for International Disabilities Convention, despite recognizing an overlap, proposed to retain this article because of its particular focus on mobility for PWDs.21 This was also emphasized by New Zealand, whose representative stated that personal mobility is critical to PWDs, both socially and economically. New Zealand added that the barriers to mobility are diverse and solutions range from individualized mobility devices, to personal support, signage, freedom of movement, personal and public transportation, and making the built environment accessible.22 In this manner, New Zealand made it clear that personal mobility is a comprehensive concept, entailing various entitlements not restricted to guaranteeing accessibility or freedom of movement. Instead, personal mobility is a concept indicating that individuals themselves can actively participate in society and can thus enjoy equal opportunities. At the seventh session of the Ad Hoc Committee, the delegates from India, Norway, South Africa, Bosnia and Herzegovina, Ethiopia, and New Zealand concurred that due to its importance, article 20 CRPD should remain as an independent provision despite the slight overlap with other articles.23 In the end, it was decided to retain article 20 CRPD even though some of its parts were removed to the later article 9 on accessibility. The universal design in subparagraph (b) and the promotion of research and development of new
of Discussion at the Seventh Session (20 January 2006), available at: . 15 United Nations, Ad Hoc Committee, Article 21—Freedom of Expression and Opinion, and Access to Information Comments, Proposals and Amendments Submitted Electronically, available at: . 16 United Nations, Ad Hoc Committee, Daily Summary of Discussions related to Article 20 Personal Mobility (1 June 2004) (n 13). 17 ibid. 18 United Nations, Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its sixth session, (n 14) para 65; United Nations, Ad Hoc Committee, Sixth Ad Hoc Committee Daily Summaries (5 August 2005) (n 7). 19 United Nations, Ad Hoc Committee, Daily Summary of Discussions related to Article 20 Personal Mobility (1 June 2004) (n 13). 20 21 ibid. ibid. 22 United Nations, Ad Hoc Committee, Sixth Ad Hoc Committee Daily Summaries (5 August 2005) (n 7). 23 United Nations, Ad Hoc Committee, Daily Summary of Discussion at the Seventh Session (20 January 2006) (n 14).
kovudhikulrungsri and hendriks
Article 20
563
technology in subparagraph (c), both of which were also mentioned in the draft article on accessibility, were moved to the provision dealing with general obligations to avoid repetition.24 Subparagraph (f ) on information had been moved to draft article 13(j) on the freedom of expression and opinion and information, in accordance with the Facilitator’s proposal during the fifth session,25 to be later merged with other subparagraphs in the draft article on accessibility.26 The difference between personal mobility and the traditional provisions on liberty of movement, as for example enshrined in article 12 of the International Covenant on Civil and Political Rights (ICCPR), was referred to several times throughout the discussions. The original intention to coin a provision with the title ‘personal mobility’ was to distinguish it from the right to liberty of movement as guaranteed by the ICCPR because the scope of the latter right was thought to be wider.27 The delegate from Kenya opined that personal mobility was a term of art focusing on PWDs and the technologies enabling them to move, but liberty of movement was a broader concept.28 The Chair of the sixth session also differentiated these two concepts by type of right, as liberty of movement is a civil and political right, while assisting people to move was deemed an economic, social, and cultural right.29 Liberty of movement under article 12 of the ICCPR had not been specified in the draft of the Working Group, so New Zealand and Kenya proposed that it be incorporated in the draft text under a different approach. New Zealand, supported by Thailand, proposed to add the text to an article discussing the right to live independently (draft article 15).30 Mexico did not concur with this idea because in its view personal mobility merely dealt with participation in community life; hence, it proposed a separate provision on liberty of movement.31 Kenya, on the other hand, restated the broader concept of liberty of movement and held the view that personal mobility and liberty of movement may or may not be compatible.32 Therefore, it proposed to draft a new provision on the concept numbered as article 20 bis.33 The necessity and added value of a separate article was illustrated by an example referred to by Russia and Uganda. A PWD who did not have a birth record leading to no citizenship could not obtain a passport; therefore, he/she would be 24 United Nations, Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its fourth session UN Doc A/59/36010 10 (14 September 2004); United Nations, Ad Hoc Committee, Sixth Ad Hoc Committee Daily Summaries (5 August 2005) (n 7); United Nations, Ad Hoc Committee, Daily Summary of Discussion at the Seventh Session (30 January 2006), available at: . 25 United Nations, Ad Hoc Committee, Facilitators Proposed Modifications on Draft Articles, available at: . 26 United Nations, Ad Hoc Committee, Daily Summary of Discussion at the Fifth Session (1 February 2005), available at: ; United Nations, Ad Hoc Committee, Sixth Ad Hoc Committee Daily Summaries (5 August 2005) (n 7). 27 United Nations, Report of the Working Group to the Ad Hoc Committee, UN Doc A/AC265/2004/ WG1 (27 January 2004) (n 12). 28 United Nations, Ad Hoc Committee, Sixth Ad Hoc Committee Daily Summaries (5 August 2005) (n 7). 29 ibid. 30 ibid; United Nations, Ad Hoc Committee, Contribution by Governments New Zealand, available at: . 31 United Nations, Ad Hoc Committee, Sixth Ad Hoc Committee Daily Summaries (5 August 2005) (n 7). 32 ibid. 33 United Nations, Ad Hoc Committee, Contribution by Governments Kenya, available at: .
kovudhikulrungsri and hendriks
564
Personal Mobility
denied the opportunity to move based on disability.34 In the seventh session, there was a separate discussion on the article concerning liberty of movement; thus, subparagraph (e) was dropped from draft article 20 CRPD. The content of subparagraph (g) on awareness was considered to be redundant in view of other proposed provisions. The delegates from Jordan, New Zealand, and the EU proposed to delete it.35 However, the International Disability Caucus (IDC), during the seventh session, stated that awareness of personal mobility was one of the three essential elements for personal mobility and that this element was missing in the draft article. This resulted in the IDC proposing a new subparagraph (e).36 From the travaux préparatoires it does not, however, become clear why this subparagraph was not added in the final text. New Zealand pointed to the connection between personal mobility, education and rehabilitation (articles 17 and 21 of the Working Group text).37 The relationship with rehabilitation was stressed by Cameroon as well.38 This, however, did not lead to changes in the proposed text. In addition to moving redundant elements to other articles, the delegates exchanged views on the terminology used. Kenya and Qatar proposed to change the term ‘effective measures’ into ‘progressive measures’.39 In the sixth session, Qatar noted that there was no discussion on the obligation to achieve the progressive realization of article 20 CRPD. It subsequently proposed that the word ‘effective’ be replaced by ‘progressive’. The Chair responded by saying that there was no need to discuss the term ‘progressive realization’ in the context of a specific article, since that would be addressed in the Convention as a whole.40 IDC emphasized that the term ‘effective’ had already reflected an obligation of conduct instead of an obligation of result.41 On the contrary, Costa Rica and Uganda opted for ‘appropriate measures’.42 Jordan proposed adding ‘in the manner and at the time of their choice’ to the first paragraph of the Working Group’s text.43 Uganda proposed changing ‘high quality’ to ‘appropriate’.44 Rehabilitation International, Disabled Peoples’ International, the European Disability Forum, Inclusion International, the World Federation of the Deaf, the Landmine Survivors Network, the World Blind Union, and the World Union for Progressive Judaism also supported the term ‘appropriate’ as it infers that technology will differ by country and age groups.45 Costa Rica suggested the substitution of ‘live
United Nations, Ad Hoc Committee, Sixth Ad Hoc Committee Daily Summaries (5 August 2005) (n 7). ibid. 36 United Nations, Ad Hoc Committee, Daily Summary of Discussion at the Seventh Session (20 January 2006) (n 14). 37 United Nations, Ad Hoc Committee, Sixth Ad Hoc Committee Daily Summaries (5 August 2005) (n 7). 38 United Nations, Ad Hoc Committee, Sixth Ad Hoc Committee Daily Summaries (12 August 2005), available at: . 39 United Nations, Ad Hoc Committee, Sixth Ad Hoc Committee Daily Summaries (5 August 2005) (n 7); United Nations, Ad Hoc Committee, Daily Summary of Discussions related to Article 20 Personal Mobility (1 June 2004) (n 13). 40 United Nations, Ad Hoc Committee, Sixth Ad Hoc Committee Daily Summaries (5 August 2005) (n 7). 41 United Nations, Ad Hoc Committee, Article 20— Personal Mobility Comments, Proposals and Amendments Submitted Electronically, available at: . 42 United Nations, Ad Hoc Committee, Daily Summary of Discussions related to Article 20 Personal Mobility (1 June 2004) (n 13). 43 44 45 ibid. ibid. ibid. 34 35
kovudhikulrungsri and hendriks
Article 20
565
assistance and intermediaries’ with ‘and other forms of support services’ because its proposed term appeared in the UN norms and standards.46 At the seventh session, the discussion centred around the proposed texts submitted by governments and NGOs. Kenya’s text is most similar to the version of article 20 of the CRPD that was eventually adopted. It reads: Article 20 States Parties to this Convention shall take effective measures to ensure liberty of movement mobility with the greatest possible independence for persons with disabilities, including: (a) facilitating the freedom of movement of persons with disabilities in the manner and at the time of their choice, and at affordable cost; (b) facilitating access by persons with disabilities to high quality mobility aids, devices, assistive technologies and forms of live assistance and intermediaries, including by making them available at affordable cost; (c) providing training in mobility skills to persons with disabilities and to specialist staff working with persons with disabilities; (d) encouraging private entities that produce mobility aids, devices and assistive technologies to take into account all aspects of mobility for persons with disabilities.47
However, the draft text still presented a mixture of mobility and liberty of movement entitlements, an issue that had been discussed since the third session. During the seventh session, the proposal to change ‘liberty of movement’ into ‘personal mobility’ gained momentum because it echoed the objective of this article.48 The proposal to eliminate ‘with the greatest possible independence’, presented by Brazil and backed by Japan and China, did not gain strong support so the clause remained.49 The term ‘high quality’ mentioned in all proposals was considered a slippery concept, inconsistent with other provisions and creating an onerous burden on developing countries.50 Serbia and Montenegro, Brazil, Russia, and New Zealand preferred ‘safe and effective mobility’. In the end, however, the Chair of the seventh session’s suggestion to simply delete the adjective ‘high’ was adopted.51 The words ‘mobility aids, devices, assistive technologies’ were also discussed. Norway maintained that the term ‘mobility aids’ should not be included since it was covered by the term ‘assistive technologies’.52 China suggested changing ‘assistive technologies’ to ‘assistive devices and technologies’ in article 20(b) CRPD.53 However, the Chair declared that this language appeared in other parts of the text and was supported by many delegations. The Chair encouraged informal consultation on that matter.54 Another major controversial issue was whether to replace ‘live assistance’ by another term. A number of delegates, led by the Republic of Korea, preferred to specify assistant dogs and other animals.55 This proposal, however, was rebutted since live assistance was too broad to to cover human and animal assistance without any restriction only to dogs.56
ibid. United Nations, Ad Hoc Committee, Article 20— Personal Mobility Comments, Proposals and Amendments Submitted Electronically (n 41). 48 United Nations, Ad Hoc Committee, Daily Summary of Discussion at the Seventh Session (20 January 2006) (n 14). 49 50 51 52 53 54 55 ibid. ibid. ibid. ibid. ibid. ibid. ibid. 56 ibid; United Nations, Report of the Working Group to the Ad Hoc Committee, UN Doc A/AC265/ 2004/WG 1 (27 January 2004) (n 12) fn 70. 46 47
kovudhikulrungsri and hendriks
566
Personal Mobility
Thereafter, the Republic of Korea did not oppose this term as long as there was a note explaining its meaning.57 The subparagraph on training remained almost untouched. The delegate from Morocco proposed to add exchange of experience among states on training,58 but the final text remained verbatim with the Working Group text. In relation to entities that produce mobility aids, the discussion based on Kenya’s text was whether the provision should cover both public and private entities. Russia preferred to cover both since states often provide tax advantages to both public and private entities, while Australia suggested that it be limited to private entities only due to the relevance of market forces in the development of assistive technologies.59 The conclusion of the discussion was to cover public entities as well.60 The issue concerning costs and financial measures had been underscored by several delegates since the beginning of the discussion. Delegates from Bahrain, Yemen, and Oman proposed a new paragraph on tax exemption to technologies so PWDs can access them at low prices.61 Kenya, in the sixth session, and Yemen, in the seventh session, proposed to clarify that the availability of facilities of services implied that these items be subsidized or become available free of charge.62 IDC supported this proposal and pointed out that article 23(3) of the Convention on the Rights of the Child (CRC) contains a comparable obligation, so it could serve as a model for this issue.63 In relation to the formulation in general, there was a discussion on whether to make this provision a right-based approach. Before drafting the Working Group text, the right to mobility was mentioned as a stand-alone right in the Bangkok Draft and the Chair’s Draft Element for a Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities.64 NGOs preferred this article to be framed as a right rather than as an obligation. NHRIs viewed ‘liberty of movement’ as more rights-based than ‘personal mobility’, a term that was allegedly based on the medical model of disability.65 The Korea Solidarity for International Disabilities Convention desired to rename the article to ‘right to personal mobility’ in order to establish a special right for PWDs.66 IDC even proposed to frame the first paragraph of the draft text
57 United Nations, Ad Hoc Committee, Daily Summary of Discussion at the Seventh Session (20 January 2006) (n 14). 58 United Nations, Ad Hoc Committee, Daily Summary of Discussions related to Article 20 Personal Mobility (1 June 2004) (n 13). 59 United Nations, Ad Hoc Committee, Daily Summary of Discussion at the Seventh Session (20 January 2006) (n 14). 60 ibid. 61 United Nations, Ad Hoc Committee, Daily Summary of Discussions related to Article 20 Personal Mobility (1 June 2004) (n 13); United Nations, Ad Hoc Committee, Sixth Ad Hoc Committee Daily Summaries (5 August 2005) (n 7). 62 United Nations, Ad Hoc Committee, Sixth Ad Hoc Committee Daily Summaries (5 August 2005) (n 7); United Nations, Ad Hoc Committee, Daily Summary of Discussion at the Seventh Session (20 January 2006) (n 14). 63 ibid. 64 United Nations, Ad hoc Committee, Compilation of Proposals for Elements of a Convention (15 January 2004), available at: . 65 United Nations, Ad Hoc Committee, Daily Summary of Discussions related to Article 20 Personal Mobility (1 June 2004) (n 13). 66 United Nations, Ad Hoc Committee, Sixth Ad Hoc Committee Daily Summaries (5 August 2005) (n 7).
kovudhikulrungsri and hendriks
Article 20
567
as ‘states parties recognize the right’ instead of an obligation-based pattern.67 However, none of the proposals of the NGOs received much support. Austria, on behalf of the EU, observed that the right to mobility was not recognized in other conventions so the EU could not support this language.68 However, the travaux préparatoires revealed that draft article 20, particularly paragraph 1 thereof, is rooted in article 5(d)(i) of the International Convention on the Elimination of All Forms of Racial Discrimination (CERD), article 15(4) of the Convention on the Elimination of all Forms of Discrimination Against Women (CEDAW) and article 39 of the International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families (CMW), all are in relation to the right to freedom of movement.69 It follows from the above that it was everything but self-evident that the CRPD would contain a separate provision on personal mobility, particularly given its close connections with the envisaged provisions on Accessibility (article 9) and on Liberty of movement (article 18). From the discussions in and outside the Ad Hoc Committee it became, however, increasingly clear that mobility is a precondition for PWDs for the enjoyment of almost all rights protected by the CRPD. It can therefore be argued that personal mobility already existed as an accessory right under human rights law, whereas the denial to take the measures stipulated in article 20 CRPD nowadays can also lead to an independent violation of personal mobility, however defined.
2.1 Interrelationship between Article 20 and other CRPD Articles In addition to the interconnection with other articles, notably articles 4(g), (h), 9, 18, 19, and 26, as mentioned in the travaux préparatoires, personal mobility relates to several other provisions in the CRPD. In the case of women with disabilities, denying personal mobility, removing or controlling communication aids, and refusal of assistance to communicate constitute acts of violence, exploitation and/or abuse against women with disabilities; thus, it violates article 16 on freedom from exploitation, violence, and abuse.70 The right to inclusive education can be effectively recognized by guaranteeing personal mobility on an independent basis.71
3. Paragraph 1 The first paragraph of article 20 CRPD requires states parties to take effective measures to ensure personal mobility with the greatest possible independence. It also contains a few terms of art with no definition in the CRPD.
67 United Nations, Ad Hoc Committee, Daily Summary of Discussion at the Seventh Session (20 January 2006) (n 14); United Nations, Ad Hoc Committee, Article 20—Personal Mobility Comments, Proposals and Amendments Submitted Electronically (n 41). 68 United Nations, Ad Hoc Committee, Daily Summary of Discussion at the Seventh Session (19 January 2006), available at: . 69 United Nations, Ad Hoc Committee, Article 20—Personal Mobility References, available at: . 70 CRPD Committee, General Comment on Article 6: Women with Disabilities UN Doc CRPD/C/GC/ 3 (2016) para 31. 71 CRPD Committee, ‘General Comment on Article 24: Right to Inclusive Education’ UN Doc CRPD/ C/GC/4 (2014) para 51.
kovudhikulrungsri and hendriks
568
Personal Mobility
3.1 Effective Measures Article 20 thus requires states parties to take ‘effective measures’. This term is also found, among others, in article 12(5), on equal recognition before the law, and article 32, on international cooperation, of the CRPD but it differs from the same wording of this in article 7 of the CERD concerning the measures states should take in the field of education. The latter provision stipulates that states parties are required to take ‘immediate and effective measures’.72 Under the terms of the CERD states parties should take measures speedily and these should be effectively implemented.73 It is correct that Article 20 CRPD does not encompass the same term as that found in the CERD because a number of obligations aimed at ensuring personal mobility cannot be undertaken immediately in the sense of ‘speedily’ but, instead, require progressive implementation. The CRPD does not provide an exhaustive list of effective measures to be taken, but, nonetheless, stipulates a variety of broad measures in subparagraphs (a)–(d). In addition to the measures mentioned in these subparagraphs, in accordance with several concluding observations the CRPD Committee has also made express reference to additional measures.74 Monitoring is another measure for ensuring personal mobility. In relation to the EU, since it shares competence with its member states, the CRPD Committee raised concerns regarding different practices among national enforcement bodies, particularly since this may lead to unequal treatment and restrictions to the enjoyment of rights by passengers with disabilities.75 The CRPD Committee therefore recommended harmonization of existing legislation concerning passenger rights.76 In order to render a measure effective, the general obligations listed under article 4 CRPD may be applied in conjunction; therefore, states parties should consult with PWDs or NGOs working with and for PWDs.77 The measures taken should cover persons with all types of impairments. For instance, the CRPD Committee was concerned about the use of sign language in driving lessons and exams provided in Serbia.78 In relation to Slovakia, the CRPD Committee was concerned with access to mobility aids for people with complex physical disabilities.79 In the CRPD Committee’s concluding observations on the report of Moldova, it expressed concern about the exclusion of persons with visual impairments from programmes that offer assistive equipment.80 A measure should not be limited to only a single area; instead, geographic equality should 72 International Convention on the Elimination of All Forms of Racial Discrimination (adopted 21 December 1965, entered into force 4 January 1969) 660 UNTS 195 (CERD) art 7. 73 Patrick Thornberry, The International Convention on the Elimination of All Forms of Racial Discrimination: A Commentary (OUP 2016) 439. 74 eg CRPD Committee, Concluding observations on the initial report of Slovakia, UN Doc CRPD/C/ SVK/CO/1 (17 May 2016) paras 59–60; CRPD Committee Concluding observations on the initial report of El Salvador UN Doc CRPD/C/SLV/CO/1 (8 October 2013) paras 43–44. 75 CRPD Committee, Concluding Observations on the Initial Report of the European Union UN Doc CRPD/C/EU/CO/1 (2 October 2015) para 52. 76 ibid para 53. 77 Convention on the Rights of Persons with Disabilities (adopted 24 January 2007, entered into force 3 May 2008) 999 UNTS 3 (CRPD) art 4(3). See CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Slovakia UN Doc CRPD/C/SVK/1 (24 September 2014) para 198. 78 CRPD Committee, Concluding Observations on the Initial Report of Serbia UN Doc CRPD/C/SRB/ CO/1 (23 May 2016) para 41. 79 CRPD Committee, Concluding Observations on the Initial Report of Slovakia (n 74) para 59. 80 CRPD Committee, Concluding Observations on the Initial Report of Republic of Moldova UN Doc CRPD/C/MDA/CO/1 (18 May 2017) para 38.
kovudhikulrungsri and hendriks
Article 20
569
be taken into account. Although the obligation to undertake effective measures in urban and rural areas is mentioned in article 9, but not article 20, the CRPD Committee queries and recommends that states parties specifically ensure access for PWDs living in rural areas.81 An indirect example of effective measures may be drawn from the legal framework of subsidies. In relation to subsidy amounts, the Republic of Korea differentiates the subsidy between PWDs from low and high-income families; however, the CRPD Committee did not question this practice.82 Thus, such a practice may be considered more effective and not discriminatory, in contrast to the granting of subsidies to those who do not need financial support.
3.2 Personal Mobility Personal mobility, as seen in the travaux préparatoires, was a confusing term. The CRPD is silent on its definition. The CRPD Committee elaborates further in the Guidelines on the treaty-specific document to be submitted by states parties under article 35 CRPD (CRPD Guidelines) by stating that article 20 recognizes the right of PWDs to move freely with the greatest possible independence.83 It seems that ‘to move freely’ has the same meaning as ‘personal mobility’, since the CRPD Committee makes use of this term when referring to personal mobility. As stated above, paragraph 1 of article 20 is modelled after article 5(d)(i) CERD, article 15(4) CEDAW, and article 39 CMW, all of which focus on the movement of persons enjoying rights under the respective conventions.
3.3 Greatest Possible Independence The ‘greatest possible independence’ of PWDs reflects the principle of inherent dignity, individual autonomy, and freedom to make own choices in article 3 CRPD. The particular wording stipulates that measures are considered effective where they provide PWDs the greatest degree of independence that may be possibly achieved. For instance, a measure to facilitate personal mobility should not focus exclusively on PWDs as such, but should take into account their reliance on living assistance. Thus, an effective measure should allow free tickets for those accompanying PWDs requiring accompaniment, as well as access for service animals.84
4. Paragraph (a) Paragraph (a) requires facilitation of personal mobility. The CRPD Guidelines request states parties to report on the following: [m]easures to facilitate the personal mobility of persons with disabilities, including the use of signal indicators and street signs for accessibility, in the manner and the time of their choice, as well as 81 CRPD Committee, List of Issues in relation to the Initial Report of Kenya, UN Doc CRPD/C/KEN/Q/ 1 (22 May 2015) para 19; CRPD Committee, Concluding Observations on the Initial Report of El Salvador (n 74) para 44. 82 CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by the Republic of Korea UN Doc CRPD/C/KOR/1 (27 February 2013) para 95. 83 CRPD Committee, Guidelines on Treaty-specific Document to be Submitted by States Parties under Article 35, paragraph 1, of the Convention on the Rights of Persons with Disabilities, UN Doc CRPD/C/2/ 3 (2009) (CRPD Guidelines). 84 See CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Slovakia (n 77) para 194; CRPD Committee, Concluding Observations on the Initial Report of Serbia (n 78) para 4.
kovudhikulrungsri and hendriks
570
Personal Mobility
their access to forms of assistance (human, animal, or assistive technologies and devices), at an affordable cost.85
The measures appear to consist of two aspects. One concerns signal indicators in transportation, the other being mobility aids as well as other assistive technologies for personal use of PWDs. The former aspect overlaps with article 9 CRPD on accessibility, which also focuses on the environment, ie accessible transport.86 The CRPD Guidelines also request states to report on measures taken to ensure PWD access to signal indicators and street signs in accordance with article 9.87 With this repetitive request it comes as no surprise to see similar issues being treated or addressed differently by states parties under articles 9 and 20. For instance, EU Regulation (EC) No 1107/2006 of the European Parliament and the Council of 5 July 2006, concerning the rights of disabled persons and persons with reduced mobility when travelling by air, was mentioned in both provisions of the CRPD. Belgium, Cyprus, Latvia, Lithuania, Poland, Serbia, and Sweden referred in their country reports to this Regulation under article 9 CRPD,88 while the Czech Republic, Germany, Slovakia, and Slovenia mentioned it under article 20.89 The EU, Austria and the United Kingdom submitted information on travel by air under both articles.90 Facilitating personal mobility can be achieved by applying a number of measures, including the recognition of disability cards issued in other countries. In the case of
CRPD Guidelines (n 83). CRPD Committee, General Comment on Article 9 (2014) UN Doc CRPD/C/GC/2, para 1: ‘Without access to the physical environment, to transportation, to information and communication, including information and communications technologies and systems, and to other facilities and services open or provided to the public, persons with disabilities would not have equal opportunities for participation in their respective societies.’ 87 CRPD Guidelines (n 83). 88 CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Belgium UN Doc CRPD/C/BEL/1 (13 March 2013) para 51; CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Cyprus UN Doc CRPD/C/CYP/1 (27 February 2015) para 77; CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Latvia UN Doc CRPD/C/LVA/1 (29 October 2015) para 106; CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Lithuania UN Doc CRPD/C/LTU/1 (2 December 2014) para 51; CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Poland UN Doc CRPD/C/POL/1 (3 November 2015) para 92; CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Serbia UN Doc CRPD/C/SRB/1 (29 September 2014) para 111; CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Sweden UN Doc CRPD/C/SWE/ 1 (18 September 2012) para 87. 89 CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Czech Republic UN Doc CRPD/C/CZE/1 (27 June 2013) para 210; CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Germany UN Doc CRPD/C/DEU/1 (7 May 2013) para 163; CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Slovakia (n 77) para 196; CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Slovenia UN Doc CRPD/C/SVN/1 (30 October 2015) para 117. 90 CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by the European Union UN Doc CRPD/C/EU/1 (3 December 2014) paras 53, 109; CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Austria, UN Doc CRPD/C/AUT/1 (10 October 2011) paras 112, 205; CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by the United Kingdom UN Doc CRPD/C/GBR/1 (3 July 2013) paras 95, 193. 85 86
kovudhikulrungsri and hendriks
Article 20
571
the EU, the CRPD Committee has urged the EU to implement the European Mobility Card—a mutual recognition of disability cards and related entitlements.91 Personal mobility measures can be divided in two clusters. One concerns PWDs’ own vehicles and the other public transport used by PWDs. In respect of PWDs’ own vehicles, measures should start by facilitating driving tests. Allowing PWDs to take a driving test can facilitate their personal mobility with the greatest possible independence. This also strengthens individual autonomy, one of the CRPD’s general principles (article 3 CRPD). The CRPD Committee expressed concerns about states parties that do not provide oral interpretation or sign language interpretation to persons with a hearing impairment applying for a driving licence.92 A parking card for PWDs,93 an identification mark for a vehicle used by PWDs,94 a reserved parking area in markets, commercial centres, and government offices95 are among the measures reported by states parties as having been implemented. In terms of public transport, obligations such as providing effective means of public transport with ramps, Braille signs, and special seats overlap with the obligations on states parties under article 9 CRPD. As a result, such measures are both reported under article 9 and article 20, if not both. One way to ensure personal mobility of PWDs in public transport is to assign specific spaces to PWDs, especially for wheelchair users who require a particular amount of space to store their wheelchair safely. This area in a bus or other means of public transport can, however, also be used by non-disabled persons travelling, for example, with a pushchair. This may give rise to questions of priority in respect of this space in cases of conflicting users with a variety of needs. In January 2017, the UK Supreme Court handed down a judgment in FirstGroup Plc v Paulley.96 The case concerned a complaint by Mr Paulley, a wheelchair user, who tried to board a bus operated by the company FirstGroup. Mr Paulley was denied access to the bus because a non-disabled woman with a pushchair refused to vacate the wheelchair space. As a result, Mr Paulley had to wait for the next bus, missed a train and arrived at his destination an hour later than planned.97 The Supreme Court held that the company’s policy of first come first served basis,98 should have been amended to give wheelchair users priority over the reserved space because service providers owe positive duties towards PWDs but not to other passengers.99 Thus, the main issue concerned the service provider’s duty to make reasonable adjustment CRPD Committee, Concluding Observations on the Initial Report of the European Union (n 75) para 53. CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Slovakia (n 77) para 199; CRPD Committee, Replies of Serbia to the List of Issues UN Doc CRPD/C/SRB/Q/1/Add 1 (16 February 2016) para 80. 93 CRPD (n 77) art 4(3); see CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Slovakia (n 77) para 190; CRPD Committee, Replies of Cyprus to the List of Issues, UN Doc CRPD/C/CYP/Q/1/Add 1 (6 January 2017) para 78. 94 CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by the Republic of Korea (n 82) para 97; CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Serbia (n 88) para 234. 95 CRPD Committee, Replies of Qatar to the List of Issues, UN Doc CRPD/C/QAT/Q/1/Add 1 (6 July 2015) para 67. 96 97 FirstGroup Plc v Paulley [2017] UKSC 4. ibid paras 3–4. 98 The Public Service Vehicles (Conduct of Drivers, Inspectors, Conductors and Passengers) (Amendment) Regulations 2002 (Conduct Regulations) para 7. 99 FirstGroup Plc (n 96) paras 100, 101, 157. 91 92
kovudhikulrungsri and hendriks
572
Personal Mobility
under section 29(7) of the English Equality Act, which implemented the CRPD.100 The Supreme Court unanimously found that FirstGroup had not reasonably accommodated Mr Paulley because it merely required a driver to simply request a non-wheelchair user to vacate a space.101 While the cases mentioned above all dealt with the duty to provide reasonable accommodation, it is also relevant to personal mobility now that it directly concerns access to public transport. In this respect, Waddington noted that article 20 on personal mobility implicitly refers to reasonable accommodation.102 This brings the case within the ambit of article 20 CRPD. While all judges, despite various concurring and dissenting opinions, agreed that the bus company should take further steps to ensure personal mobility of wheelchair users, there was no consensus with respect to the reasonableness of the various measures that could be taken to accommodate a disabled traveller.
4.1 Affordable Cost Affordable cost for personal mobility for PWDs in the context of this paragraph may be achieved by making PWDs eligible for a discount ticket or similar measures, such as by an exemption from charges for the use of motorways, cash allowance for transport, free tickets for persons accompanying PWDs requiring accompaniment, exemption from paying an annual motor vehicle fee for using public roads, or a general monthly allowance.103 These measures are, however, contested since they may be perceived as triggering reverse discrimination unless objectively justified.104 The provision of a discount is not the only means to ensure affordable cost for PWDs. States can guarantee that PWDs will not pay any extra fees for services in relation to their personal mobility. Before the adoption of the CRPD, the English Court of Appeal held in the case of Ross v Ryanair that a wheelchair user should not be charged an extra fee for using a wheelchair at the airport, since this constitutes discrimination under the British Disability Discrimination Act.105
5. Paragraph (b) 5.1 Quality When states parties facilitate access by providing mobility and assistive devices themselves, the CRPD Committee is concerned about the quality of subsidized mobility and 100 CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by the United Kingdom (n 90) paras 93, 95. 101 FirstGroup Plc (n 96) paras 66, 83, 106, 144. 102 Lisa Waddington, ‘Breaking New Ground: The Implications of Ratification of the UN Convention on the Rights of Persons with Disabilities for the European Community’ in Oddny M Arnardóttir and Gerard Quinn (eds), The UN Convention on the Rights of Persons with Disabilities: European and Scandinavian perspectives (Martinus Nijhoff 2009) 116. 103 CRPD (n 77) art 4(3). See CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Slovakia (n 77) paras 190, 194–95; CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by the Republic of Korea (n 82) para 97; CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Serbia (n 89) para 235; CRPD Committee, Replies of Cyprus to the List of Issues (n 93) para 80. 104 Randall Kennedy, For Discrimination: Race, Affirmative Action, and the Law (Pantheon Books 2013). 105 Ross v Ryanair Ltd & Anor [2004] EWCA Civ 1751.
kovudhikulrungsri and hendriks
Article 20
573
assistive devices, as may be concluded from the Committee’s concluding observations to Mongolia.106 The CRPD Committee further linked the quality with subsidy amounts, as well as an ability by PWDs to make personal decisions.107 The qualifier of quality is still a key matter because of its inconsistent usage in the concluding observations. Although the term ‘high’ was removed from the final text of article 20(b), it seems that the CRPD Committee still encourages states parties to facilitate access to high quality technologies because the CRPD Guidelines still require them to ensure access to ‘high quality’, rather than mere ‘quality’ technologies.108 In the same manner, the expression ‘high quality’ was mentioned in the concluding observations to Paraguay where the CRPD Committee urged Paraguay to ensure PWDs access to high quality equipment.109 In relation to Slovakia, the CRPD Committee specified ‘good’ quality aids.110 Nevertheless, there is no indication about what ‘high’ or ‘good’ quality actually consists of. International standards adopted by international organizations, such as the International Organization for Standardization (ISO), which publishes a standards catalogue on mobility aids and assistive products for PWDs, may provide a suitable platform for this purpose.111
5.2 Mobility Aids, Devices, Assistive Technologies These three terms are undefined and appear in several articles in the CRPD with different modifiers, proving inconsistent language in the text of the CRPD. The meaning of ‘mobility aids’ is not defined in the Working Group’s text. It is mentioned in Articles 4 and 20 CRPD. The obligation pertaining to mobility aids in article 4 was actually removed from draft article 20. It is unclear whether the term ‘devices’ under article 20 CRPD is restricted to mobility devices or also extends to other types of facilities to meet the needs of PWDs. The definition of ‘universal design’ and paragraph 3 of article 26 use the term ‘assistive’ to modify devices so their scope seems clearer than that of article 20 CRPD. Apart from article 20 CRPD, the term ‘assistive technology’ is found in articles 4(g) and (h), 29(a)(ii), and 32 CRPD, while article 26 CRPD uses the term ‘assistive devices and technologies’. The CRPD also uses the term ‘accessible information and communication technology’ in articles 4(g) and 9, while the term ‘appropriate technologies’ is referred in the context of information in article 21. Therefore, it appears that the CRPD language is inconsistent. This assumption is supported by IDC, which proposed during the discussion on the draft article on accessibility that any reference to assistive technologies should 106 CRPD Committee, Concluding Observations on the Initial Report of Mongolia UN Doc CRPD/C/ MNG/CO/1 (13 May 2015) para 32. 107 ibid para 33; CRPD, Concluding Observations on the Initial Report of Armenia UN Doc CRPD/C/ ARM/CO/1 (8 May 2017) para 34. 108 CRPD Guidelines (n 83). 109 CRPD Committee, Concluding Observations on the Initial Report of Paraguay UN Doc CRPD/C/ PRY/CO/1 (15 May 2013) para 52. 110 CRPD Committee, Concluding Observations on the Initial Report of Slovakia (n 74) para 60. 111 See International Organization for Standardization, ISO/ TC 173— Assistive products for persons with disability, available at: ; International Organization for Standardization, 11.180.01: Aids for disabled and handicapped persons in general, available at: .
kovudhikulrungsri and hendriks
574
Personal Mobility
encompass information and communication technologies demonstrating consistency of language.112 The term ‘assistive technology’ is left undefined in both the Working Group’s text and the CRPD. The International Classification of Functioning, Disability and Health (ICF) provides a definition for ‘assistive produces and technology’ as ‘any product, instrument, equipment or technology adapted or specially designed for improving the function of a disabled person’.113 While the ICF uses ‘technology’ in the singular, the CRPD mentions it in the plural form, which is likely to imply that the CRPD term covers both products and technologies.114 Another difference between the ICF and the CRPD is that the former excludes assistive technology from the concept of universal design, while the latter does not.115 The addition of assistive technology in the universal design definition was proposed by IDC because the concept of universal design does not replace the need for assistive devices, in particular for PWDs whose impairment is rare.116 ‘Product’ and ‘technology’ are classified as environmental factors under the ICF, so assistive products and technologies are listed and categorized for various purposes, namely, personal use in daily living, personal indoor and outdoor mobility and transportation, communication, education, employment, culture, recreation and sport, and the practice of religion or spirituality.117 The CRPD does not take a similar approach so it does not provide any list based on any particular activity. However, it is without doubt that personal mobility interrelates with personal development of PWDs, as well as participation in society. The CRPD Committee’s General Comment No 4 on education states that the right to inclusive education can be effectively recognized by the availability of mobility aids.118 What exactly constitute mobility aids, devices, or assistive technologies is as yet an unresolved issue. There is no exact case under the CRPD Committee to shed light on the meaning of these three terms. This is exemplified by H M v Sweden, a case concerning the permission to construct a hydrotherapy pool for the rehabilitation of a person with a physical disability, a disability that had led to mobility problems.119 The CRPD Committee dismissed the claim on personal mobility because the author of the communication had not sufficiently substantiated his claim that article 20 had been violated.120 As a result, the CRPD Committee did not address whether a hydrotherapy pool may be considered a species of assistive technology. In F v Austria, the central issue involved the lack of immediate access to real-time information at new tram stops while existing ones
112 United Nations, Ad Hoc Committee, Daily Summary of Discussion at the Seventh Session (17 January 2006), available at: . 113 World Health Organization, International Classification of Functioning, Disability and Health (2001) 173. 114 Johan Borg, Stig Larsson, and Per-Olof Östergren, ‘The Right to Assistive Technology: For Whom, For What, and by Whom?’(2011) 26:2 Disabil Soc 151, 154. 115 ibid 154. 116 United Nations, Ad Hoc Committee, Article 2—Definitions Comments, Proposals and Amendments Submitted Electronically, available at: . 117 CRPD (n 77) art 2; World Health Organization, International Classification of Functioning, Disability and Health (n 113) 174–78. 118 CRPD Committee, General Comment on Article 24 (n 71) para 51. 119 CRPD Committee, Communication No 3/2011, H M v Sweden UN Doc CRPD/C/7/D/3/2011 21 May 2012. 120 ibid para 7.4.
kovudhikulrungsri and hendriks
Article 20
575
had been equipped with real-time information for PWDs.121 The CRPD Committee found that the author of the communication had failed to provide sufficient information to enable the Committee to assess to which extent the alleged lack of an audio system affected the author’s right to personal mobility and his right to live independently.122 Despite not considering whether an audio system constitutes assistive technology or not, the CRPD Committee held that an audio system for persons with visual impairment constitutes ‘information and communication technology’ under article 9 CRPD.123 In addition, terms used in country reports are inconsistent, as is the case with medical aids,124 technical aids,125 and assistive devices.126 The same holds true to the CRPD Committee which interchangeably uses terms such as equipment and aids,127 assistive devices, technologies, and service,128 and mobility aids, assistive equipment, devices, and technologies129 in its concluding observations. Irrespective of different term usage, the CRPD Committee indicates their coverage to be from newly purchased ones to existing devices in need of repair.130 Unquestionably, the level of independence of many PWDs relies on mobility aids and assistive devices. When these aids or devices are lost or damaged, PWDs’ personal mobility can be greatly affected. In international travel, international conventions do not differentiate between baggage and mobility aids and as a result carriers are generally under the same strict liability regime with limited amounts of liability.131 These conventions, nevertheless, do not prevent states parties from setting a higher liability amount.132 The EU ratified all these conventions but its regulations oblige its states parties to provide full compensation for mobility aids in case of rail transport and corresponding to the replacement value in case of sea travel, while in case of air transport, the amount of compensation PWDs with lost or damaged aid and assistive devices can successfully claim is limited subject to the provision in the applicable international convention.133 Moreover, 121 CRPD Committee, Communication No 21/2014, F v Austria UN Doc CRPD/C/14/D/21/2014 (21 September 2015). 122 123 ibid para 8.8. ibid para 8.5. 124 CRPD (n 77) art 4(3). See CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Slovakia (n 77) para 197. 125 CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Serbia (n 88) para 238. 126 CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Uganda UN Doc CRPD/C/UGA/1 (10 March 2015) para 141. 127 CRPD Committee, Concluding Observations on the Initial Report of Paraguay (n 109) para 52. 128 CRPD Committee, Concluding Observations on the Initial Report of Mongolia (n 106) para 33. 129 CRPD Committee, Concluding Observations on the Initial Report of Armenia (n 107) para 34. 130 CRPD Committee, Concluding Observations on the Initial Report of Mongolia (n 106) para 33. 131 See Convention for the Unification of Certain Rules Relating to International Transportation by Air (adopted 12 October 1929, entered into force 13 February 1933) TS 876 (Warsaw Convention); Convention for the Unification of Certain Rules for International Carriage by Air (adopted 28 May 1999, entered into force 4 November 2003) ICAO Doc 9740 (Montreal Convention); Athens Convention relating to the Carriage of Passengers and Their Luggage by Sea (adopted 13 December 1974, entered into force 28 April 1987) 1463 UNTS 19 (Athens Convention); Protocol of 2002 to the Athens Convention Relating to the Carriage of Passengers and Their Luggage by Sea 1974 (adopted 1 November 2002, entered into force 23 April 2014); Convention concerning International Carriage by Rail (adopted 9 May 1980 entered into force 1 May 1985); Protocol of 3 June 1999 for the Modification of the Convention concerning. International Carriage by Rail (adopted 3 June 1999 entered into force 1 July 2006). 132 Warsaw Convention (n 131) art 33; Montreal Convention, (n 131) arts 25, 27. 133 Regulation (EC) No 1107/2006 of the European Parliament and of the Council of 5 July 2006 concerning the rights of disabled persons and persons with reduced mobility when travelling by air (2006) OJ L 204/1, Art 12; Regulation (EC) 1371/2007 of the European Parliament and of the Council of 23 October 2007 on rail passengers’ rights and obligations [2007] OJ L 315/14, art 25; Regulation (EU) No 1177/2010
kovudhikulrungsri and hendriks
576
Personal Mobility
in case of road transport, the applicable EU Regulation does not set any financial limit.134 Remarkably, the EU Regulation on PWD rights in air transport was adopted prior to regulations for other modes of transport. The unique nature of air transport is also present in the laws of the US and Canada. In case of a domestic flight, the US obliges air carriers to financially compensate a traveller whose mobility aid got lost or damaged while travelling without any restriction, but international air carriers are subject to the scope of the applicable international convention.135 Conversely, Canada requires its national air carriers to waive limitation of liability for mobility aids in all routes.136 The International Civil Aviation Organization (ICAO) recognizes the problem with respect to the limitation of liability for mobility aids so it encourages air carriers to reimburse the full replacement cost of the mobility aids.137 Yet, its enforceability is questionable because ICAO mentions this in its guidance material which as such it not legally binding. The limited amount of compensation offered for damage or loss of mobility aids corresponds to the repair or replacement expenses for mobility aids. This does, to some extent, affect access to mobility aids at affordable costs under article 20(b) CRPD. This concern was addressed by the CRPD Committee but in the context of harmonization among EU legislation in different modes of transport. The CRPD Committee in its concluding observations recommended the EU to harmonize its existing legislation to bring it in line with its regulations concerning the rights of maritime passengers.138 In other words, the CRPD Committee’s approach is restricted only to the EU; however, the CRPD Committee can exercise its authority under article 38 of the CRPD to discuss with ICAO or other international organizations responsible for international transport.
5.3 Live Assistance Live assistance is described in a non-exhaustive manner in the Working Group’s text to include ‘human assistance, such as guides and readers, and animal assistance, such as guide dogs’.139 Nevertheless, there was no definition in the final text despite the suggestion made by the Republic of Korea to insert a note clarifying its meaning.140 In practice, dogs appear to be the most common service animals. Replies to lists of issues submitted
of the European Parliament and of the Council of 24 November 2010 concerning the rights of passengers when travelling by sea and inland waterway and amending Regulation (EC) No 2006/2004 (2010) OJ L 334/ 1 art 15. 134 Regulation (EU) No 181/2011 of the European Parliament and of the Council of 16 February 2011 concerning the rights of passengers in bus and coach transport and amending Regulation (EC) No 2006/2004 (2011) OJ L 55/1 art 17. 135 14 C F R § 382.131 (2009); Non-discrimination on the Basis of Disability in Air Travel, 73 FR 27614, 27656 13 May 2008. 136 Air Transportation Regulations s 155(3)(b). 137 International Civil Aviation Organization, Manual on Access to Air Transport by Persons with Disabilities (March 2013) Doc 9984 para 10.5. 138 CRPD Committee, Concluding Observations on the Initial Report of the European Union (n 75) para 53. 139 United Nations, Report of the Working Group to the Ad Hoc Committee, UN Doc A/AC265/2004/ WG 1 (27 January 2004) (n 12) fn 70. 140 United Nations, Ad Hoc Committee, Daily Summary of Discussion at the Seventh Session (20 January 2006) (n 14).
kovudhikulrungsri and hendriks
Article 20
577
to the CRPD Committee by the Republic of Korea and Serbia explicitly mention dogs.141 The CRPD Committee did not ask states parties to expand their legislation or practices to cover other types of animal assistance. The CRPD Committee even appreciated the adoption of the Guide Dog Assistance Law by Serbia.142 In order to provide access to live assistance, there is a clear need for a much larger availability of trained live assistance. This can be achieved by increasing the number of training centres, facilities, and resources, as seen in the case of the CRPD Committee’s recommendation to Serbia to create more training centres for guide dogs.143 As a matter of fact, a dog’s function to assist PWDs has been broadened to assist PWDs other than persons with visual impairment, such as persons with hearing impairment, mental illness, and mobility impairment.144 But there are more animals that can assist PWDs in enhancing their mobility. For instance, trained capuchins can become helpers for persons with a physical impairment.145 Guide horses can act as guide dogs for persons with visual impairment and dog allergies.146 Emotional service animals comfort people suffering from mental and emotional conditions and may not necessarily need to be trained. Due to the various types of animals and functions they perform, defining the expression ‘service animals’ is no less difficult than that of PWDs. It is questionable whether unconventional animals can be considered service animals and whether they can gain access to public places. Granting or denying access to these animals can fairly affect the personal mobility of PWDs who depend upon their presence and guidance. At the international level, service animals under the guidance material of ICAO are not restricted only to dogs. Instead, ICAO allows each state and each aircraft operator to set its own regulations.147 The US has only signed the CRPD but has not yet ratified it.148 Under US law and policy, the provision of mobility aids is not recognized as a right,149 but interestingly, US law concerning service animals is more comprehensive than the laws of all other state parties to the CRPD. Under the US Air Carrier Access Act (ACAA)150 and the Non- discrimination on the Basis of Disability in Air Travel (Part 382),151 US air carriers must
141 CRPD Committee, Replies of the Republic of Korea to the List of Issues, UN Doc CRPD/C/KOR/ Q/1/Add 1 (27 June 2014) para 96; CRPD Committee, Replies of Serbia to the List of Issues (n 92) para 39. 142 CRPD Committee, Concluding Observations on the Initial Report of Serbia (n 78) para 4. 143 ibid para 42. 144 Paul Harpur, ‘Rights of Persons with Disabilities and Australian Anti-Discrimination Laws: What Happened to the Legal Protections for People Using Guide or Assistance Dogs?’ (2010) 29 U Tas LR 49, 51. 145 Helping Hands, ‘Who We Are’, available at: accessed 24 February 2017. See Rebecca J Huss, ‘Why Context Matters: Defining Service Animals Under Federal Law’ (2010) 37 Pepp LR 1163, 1184. 146 The Guide Horse Foundation, ‘Message from the Guide Horse Foundation’, available at: accessed 24 February 2017; see Huss, ‘Why Context Matters’ (n 145) 1182. 147 International Civil Aviation Organization, Manual on Access to Air Transport by Persons with Disabilities (n 137) xiii. Service animals. Animals, normally being dogs or other animals, specified in national regulations. 148 United Nations Treaty Collection, ‘Status of the Convention on the Rights of Persons with Disabilities’, available at: . On 4 December 2012 the US Senate failed to ratify the CRPD in five votes short of the required two-thirds (61:38); see Rochelle Jones, ‘U.S. Failure to Ratify the Convention on the Rights of Persons with Disabilities’, available at: (accessed 13 January 2017). 149 Arie Rimmerman, Social Inclusion of People with Disabilities (CUP 2013) 132–33; John R Vaughn, A Comparative Analysis of Disability Laws (Nova Science Publishers 2009) 4, 17. 150 151 49 U S C § 41705 (1986). 14 C F R § 382 (2009).
kovudhikulrungsri and hendriks
578
Personal Mobility
accept to carry service animals, including emotional support animals on board without extra charge.152 However, this provision does not require foreign air carriers to carry service animals other than dogs because of safety-related reasons in long-haul flights and differences in airport terminals.153 Therefore, foreign air carriers are required to carry emotional support dogs even though they normally only accept guide dogs trained by accredited institutes.154 In other parts of the world, such as Australia, Colombia, the EU, Hong Kong, Japan, New Zealand, the United Arab Emirates, and the UK, domestic laws recognize dogs as service animals. The conditions under which they can assist a PWD while travelling vary.155 In mid-2016 the US Access Committee discussed how to amend the definition of ‘service animal’ in Part 382. The key issues were eligibility criteria of animals, the nature of the disability, and documentation-related requirements.156 Nevertheless, the Committee failed to make recommendations due to lack of consensus.157
5.4 Intermediaries An intermediary is a service provided to PWDs to be distinguished from live assistance. According to the Working Group’s text, intermediaries concern people who do not assist, but rather act as a conduit for the transmission of information to certain groups of PWDs.158 Thus, an intermediary has limited tasks and its definition is restricted only to human beings. Rule 4 of the UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities (UN Standard Rules) on support services, the term ‘interpreter services’ is used instead of ‘intermediaries’ but there is no definition on this term.159 An obligation to provide intermediaries should also take minority language into account so intermediaries should be deemed as covering not only official languages.160
152 14 C F R § 382.117 (2009). In the US, the definition of service animals is disharmonious, and varies on the types of animals and training requirement. For instance, the American with Disabilities Act covers trained dogs and miniature horses, while any animal, individually trained or not, falls into a definition of service animal under the ACAA. See US Department of Justice, ‘Service Animals’, available at: ; Huss, ‘Why Context Matters (n 145). 153 14 C F R § 382.117(f ) (2009); Non-discrimination on the Basis of Disability in Air Travel (n 135) 27636. 154 Air carriers submitted that they carried emotional support dog on flights to and from the US. See Letter Decision No LET-AT-A-82-2013, (5 June 2013) para 64; British Airways ‘Travelling with assistance dogs’, available at: ; KLM ‘Special assistance by KLM Cares’, available at: . 155 US Department of Transportation, ‘3rd Plenary Meeting—Service Animals Foreign Law Matrix’, available at: . 156 US Department of Transportation, ‘Key Service Animal Issues’, available at: . 157 US Department of Transportation, ‘Resolution of the US Department of Transportation on 22 November 2016’, available at: . 158 United Nations, Report of the Working Group to the Ad Hoc Committee, UN Doc A/AC.265/2004/ WG 1 (27 January 2004) (n 12) fn 71. 159 Standard Rules on the Equalization of Opportunities for Persons with Disabilities, UNGA Res 48/96 (20 December 1993) rule 4. 160 See Andrea R Ball, ‘Equal Accessibility for Sign Language under the Convention on the Rights of Persons with Disabilities’ (2011) 43 Case W Res J Int’l L 759.
kovudhikulrungsri and hendriks
Article 20
579
5.5 Affordable Cost One of the obligations on states parties is to ensure access to affordable mobility aids, devices, assistive technologies, etc. States can meet this obligation by providing subsidies requiring financial resources. In developing countries, the availability of such resources can be an obstacle. Hence, the CRPD Committee expressed concerns about the allocation of a budget for mobility requirements in its concluding observations directed to Gabon,161 Uganda,162 and Jordan,163 and the process of granting allowances in Slovakia,164 and Bosnia and Herzegovina.165 In the case of Mongolia, a subsidized amount is expected to reflect market prices.166 In relation to the Cook Islands, mobility aids and devices were donated by domestic and international charitable organizations and with a limited number of available aids and devices the country faced problems with the non-return of aids and devices.167 In 2008, the World Health Organization (WHO) published guidelines to promote personal mobility concerning wheelchairs in less-resourced settings to help policymakers deal with cost-effectiveness in wheelchair provision.168 States parties can refer to the guidelines to assess the provision of wheelchairs. The issue concerning the allocation of limited state resources was decided by the ECtHR before the adoption of the CRPD. In the case of Sentges v the Netherlands, concerning an applicant with a progressive muscle degeneration whose request to be provided with a robotic arm had been denied by the national authorities and who subsequently alleged that this decision constituted a violation of his right to private life (article 8 ECHR), the ECtHR held, assuming that article 8 was applicable to this case, that states have to strike a fair balance between the competing interests of the individual and of the community as a whole. In doing so, states enjoy a wide margin of appreciation, a margin that is even wider when the issue concerns the allocation of limited state resources, as is the case with the provision of a robotic arm to an individual. The ECtHR subsequently declared the application inadmissible.169
161 CRPD Committee, Concluding Observations on the Initial Report of Gabon UN Doc CRPD/C/GAB/ CO/1 (2 October 2015) para 46. 162 CRPD Committee, Concluding Observations on the Initial Report of Uganda UN Doc CRPD/C/ UGA/CO/1 (12 May 2016) para 41. 163 CRPD Committee, Concluding Observations on the Initial Report of Jordan UN Doc CRPD/C/JOR/ CO/1 (15 May 2017) para 39. 164 CRPD Committee, Concluding Observations on the Initial Report of Slovakia (n 74) para 59. 165 CRPD Committee, Concluding Observations on the Initial Report of Bosnia and Herzegovina UN Doc CRPD/C/BIH/CO/1 (2 May 2017) para 36. 166 CRPD Committee, Concluding Observations on the Initial Report of Mongolia (n 106) para 32. 167 CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Cook Islands UN Doc CRPD/C/COK/1 (28 June 2013) para 133; CRPD Committee, Replies of Cook Islands to the List of Issues UN Doc CRPD/C/COK/Q/1/Add 1 (4 March 2015) para 72. 168 World Health Organization, Guidelines on the Provision of Manual Wheelchairs in Less Resourced Settings (2008), available at: . 169 Sentges v Netherlands (2004) 7 CCL Rep 400; see Colm O’Cinneide, ‘Extracting Protection for the Rights of Persons with Disabilities from Human Rights Frameworks: Established Limits and New Possibilities’ in Oddny M Arnardóttir and Gerard Quinn (eds), The UN Convention on the Rights of Persons with Disabilities: European and Scandinavian Perspectives (Martinus Nijhoff 2009) 182; Olivier De Schutter, ‘Reasonable Accommodations and Positive Obligations in the European Convention on Human Rights’ in Anna Lawson and Caroline Gooding (eds), Disability Rights in Europe: From Theory to Practice (Hart 2005) 39.
kovudhikulrungsri and hendriks
580
Personal Mobility
Instead of providing financial support, a number of states opted to exempt taxes, duties, surcharges, or levies to promote affordable mobility aids.170 Another measure that may be adopted to fulfil this obligation is to lend wheelchairs and mobility aids for temporary use.171 The CRPD even urged states to provide mobility aids free of charge.172 The free of charge obligation is mentioned in article 23(3) of the CRC in recognition of the special needs of a disabled child, but the available financial resources of the persons caring for the child should be taken into account.173 Therefore, in the case of the CRPD, whether states are able to provide mobility aids free of charge or not should be taken into consideration. In addition, research and development is another way to provide affordable mobility appliances.174
6. Paragraph (c) Training must be aimed at and include PWDs with all types of impairment. This paragraph covers training for PWDs and specialist staff working with PWDs, while article 9 CRPD focuses on training for stakeholders on accessibility issues. There are several ways for states parties to provide training; they can either establish a centre for training or cooperate with other entities.175 Universities and tertiary education more generally can play a role for training mobility instructors destined to work with the community.176 The CRPD is silent on the contents of training. There was no feedback on the proposal by the delegate from Morocco to add exchange experience among states on training.177 For training for PWDs, the CRPD Committee in its concluding observations to Bosnia and Herzegovina advised the appropriate training in how to use assistive devices.178 For staff working on personal mobility, the CRPD Committee recommended that training and capacity building should be regularly conducted.179 Rule 19 of the UN Standard Rules on personnel training recommends state to develop a training programme in consultation with organizations of PWDs and PWDs.180 This reflects the principle of full and
170 CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Uganda (n 126) para 139; CRPD Committee, Replies of Kenya to the List of Issues UN Doc CRPD/C/KEN/Q/1/Add 1 (10 July 2015) para 55. 171 CRPD Committee, Replies of Cyprus to the List of Issues (n 93) para 80; CRPD Committee, Replies of Cook Islands to the List of Issues (n 167) para 71. 172 CRPD Committee, Concluding Observations on the Initial Report of Gabon (n 161) para 47; CRPD Committee, List of Issues in relation to the initial report of Azerbaijan UN Doc CRPD/C/AZE/Q/1 (27 February 2014) para 106. 173 Convention on the Rights of the Child (adopted 20 November 1989, entered into force 2 September 1990) 1577 UNTS 3 (CRC) Art 23(3). 174 CRPD Committee, Concluding Observations on the Initial Report of Paraguay (n 109) para 52. 175 See CRPD Committee, Replies of Qatar to the List of Issues (n 95) para 68. 176 CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Uganda (n 126) para 146. 177 United Nations, Ad Hoc Committee, Daily Summary of Discussions related to Article 20 Personal Mobility (1 June 2004) (n 13). 178 CRPD Committee, Concluding Observations on the Initial Report of Bosnia and Herzegovina (n 165) para 37. 179 CRPD Committee, Concluding Observations on the Initial Report of Republic of Moldova (n 79) para 39. 180 Standard Rules on the Equalization of Opportunities for Persons with Disabilities (n 159) rule 19.
kovudhikulrungsri and hendriks
Article 20
581
effective participation which is enshrined in article 3 CRPD. Also, the guidelines published by WHO also cover training materials which states parties can refer to.181
7. Paragraph (d) From the drafting history, entities in this paragraph covers both public and private.182 Measures that encourage entities include the following: supporting the development of mobility aids by universities, as seen in the case of Uganda, which supported white cane production at Kyambogo University;183 providing financial support for development and research projects, as was the case with the Republic of Korea;184 and leasing public land to NGOs working with PWDs for the purpose of workshops and production of assistive devices, as seen in the case of Kenya.185 The CRPD Committee also advised states to encourage research and development into low-cost mobility aids.186 This connects to a general obligation in article 4(g) CRPD and it is similar to rule 4 of the UN Standard Rules. The latter elaborates several suggestions to states including utilizing technical know-how, improving the standard and effectiveness of assistive devices and equipping and using local material and local facilities when possible.187 The ISO standards can be one example of the standards on mobility aids and assistive products.188
181 See World Health Organization, Guidelines on the Provision of Manual Wheelchairs in Less Resourced Settings (n 168); World Health Organization, Guidelines for Training Personnel in Developing Countries for Prosthetic and Orthotic Services (1990), available at: . 182 Ad Hoc Committee, Daily Summary of Discussion at the Seventh Session (20 January 2006) (n 14). 183 CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Uganda (n 126) para 146. 184 CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by the Republic of Korea (n 82) para 96. 185 CRPD Committee, Consideration of Reports submitted by States Parties under Article 35 of the Convention submitted by Kenya UN Doc CRPD/C/KEN/1 (28 July 2014) para 168. 186 CRPD Committee, Concluding Observations on the Initial Report of Paraguay (n 109) para 52. 187 Standard Rules on the Equalization of Opportunities for Persons with Disabilities (n 159) rule 4. 188 See International Organization for Standardization, ISO/TC 173—Assistive products for persons with disability (n 111); International Organization for Standardization 11.180.01: Aids for disabled and handicapped persons in general (n 111).
kovudhikulrungsri and hendriks
Article 21 Freedom of Expression and Opinion, and Access to Information States Parties shall take all appropriate measures to ensure that persons with disabilities can exercise the right to freedom of expression and opinion, including the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice, as defined in article 2 of the present Convention, including by: a. Providing information intended for the general public to persons with disabilities in accessible formats and technologies appropriate to different kinds of disabilities in a timely manner and without additional cost; b. Accepting and facilitating the use of sign languages, Braille, augmentative and
alternative communication, and all other accessible means, modes and formats of communication of their choice by persons with disabilities in official interactions; c. Urging private entities that provide services to the general public, including through the Internet, to provide information and services in accessible and usable formats for persons with disabilities; d. Encouraging the mass media, including providers of information through the Internet, to make their services accessible to persons with disabilities; e. Recognizing and promoting the use of sign languages.
1. Introduction 2. Background and Travaux Préparatoires 3. Paragraph 1 (Chapeau) 4. Subparagraph (a) 5. Subparagraph (b) 6. Subparagraph (c) 7. Subparagraph (d) 8. Subparagraph (e) ‘Recognizing and promoting the use of sign languages’
582 583 586 590 595 596 599 601
1. Introduction Effective access to information is instrumental for enabling participation in society1 not only as passive consumers but also as active citizens.2 Access to information (including information transmitted via media such as newspapers, radio, television, computers, mobile phones) could be seen as a precondition for exercise of the right to freedom
1 Mike Feintuck and Mike Varney, Media Regulation, Public Interest and the Law (2nd edn, Edinburgh University Press 2006) 250. 2 Eliza Varney, Disability and Information Technology: A Comparative Study in Media Regulation (CUP 2013).
Varney
Article 21
583
of expression and opinion.3 Advances in information and communication technologies (ICTs) should benefit everybody, and products and services should be designed with accessibility in mind.4 Unfortunately, persons with disabilities face significant barriers in accessing ICTs and these barriers create a ‘digital divide’ between those with and those without access to information.5 The importance of challenging these barriers cannot be overstated. Equality of access to information ensures not only that persons with disabilities do not miss out on the opportunities offered by technological advances, but also that society does not miss out on the wide range of skills that persons with disabilities have to offer.6 This chapter examines how effective is the Convention on the Rights of Persons with Disabilities (CRPD)7 in promoting and protecting the equal right of persons with disabilities to freedom of expression and opinion and access to information, focusing on article 21 CRPD. The discussion draws links between this provision and article 19 of the International Covenant on Civil and Political Rights (ICCPR)8 and stresses the importance of the CRPD in applying the right to freedom of expression and opinion and access to information to the specific circumstances of persons with disabilities.9 Links are drawn also between article 21 and other provisions of the CRPD, particularly article 9 on accessibility. The discussion concludes with a reflection on the opportunities and challenges associated with the implementation of article 21 CRPD by states parties to the Convention.
2. Background and Travaux Préparatoires The adoption of the CRPD by the UN General Assembly in 2006, tailored specifically towards protecting the human rights of persons with disabilities,10 was necessary, given the general focus of universal human rights instruments such as the ICCPR and the International Covenant on Economic, Social and Cultural Rights (ICESCR).11 Although article 19 ICCPR sought to protect the right to ‘hold opinions without interference’ and the right to freedom of expression (including ‘freedom to seek, receive and impart information and ideas of all kinds’), this provision was underused by persons with disabilities.12 The prohibited grounds for differential treatment under article 2(1) ICCPR 3 CRPD Committee, General Comment No 2: Article 9 (Accessibility), UN Doc CRPD/C/GC/2 (11 April 2014) para 1. 4 Paul T Jaeger, ‘Telecommunications Policy and Individuals with Disabilities: Issues of Accessibility and Social Inclusion in the Policy and Research Agenda’ (2006) 30 Telecommunications Policy 112. 5 Kerry Dobransky and Eszter Hargittai ‘The Disability Divide in Internet Access and Use’ (2006) 9 Information, Communication and Society 314; Tomoko Kanayama, ‘Leaving It All up to Industry: People with Disabilities and the Telecommunications Act of 1996’ (2003) 19 Information Society 185, 193; Vandana Chaudhry and Thomas Shipp, ‘Rethinking the Digital Divide in Relation to Visual Disability in India and the United States: Towards a Paradigm of “Information Inequity” ’ (2005) 25 Disability Studies Quarterly. 6 Secretariat for the Convention on the Rights of Persons with Disabilities, ‘The Convention is in Force: What Next?’ (2008), available at: (quoting Akiko Ito, Chief of the UN Secretariat for the CRPD). 7 New York, 13 December 2006, entered into force 3 May 2008 2515 UNTS 3. 8 New York, 16 December 1966, entered into force 23 March 1976 999 UNTS 171. 9 Rosemary Kayess and Phillip French, ‘Out of Darkness into Light? Introducing the Convention on the Rights of Persons with Disabilities’ (2008) 8 Human Rights Law Review 1. 10 Edward L Myers, ‘Disability and Technology’ (2004) 65 Montana Law Review 289, 323. 11 New York, 16 December 1966, entered into force 3 January 1976 993 UNTS 3. 12 Michael Ashley Stein, ‘A Quick Overview of the United Nations Convention on the Rights of Persons with Disabilities’ (2007) 31 Mental and Physical Disability Law Report 679.
Varney
584
Freedom of Expression and Opinion, and Access to Information
did not make express reference to ‘disability’, which was covered under the provision for ‘other status’.13 Article 21 CRPD clarifies how the right to freedom of expression and opinion and access to information applies to the specific circumstances of persons with disabilities14 and the obligations of states parties to promote and protect the equal enjoyment of this right by persons with disabilities.15 The adoption of this provision was intended not to create a new right, but to consolidate the existing right promoted by article 19 ICCPR.16 However, in this process, the right to freedom of expression and opinion and access to information has undergone a transformation, resulting in a strengthened formulation of this right.17 Before analysing article 21 CRPD in more detail, it is important to examine some of the proposals that could have strengthened this provision, but were omitted from the final text. The Second Session of the Ad Hoc Committee (which was entrusted with considering proposals for an international convention on the protection and promotion of the rights of persons with disabilities)18 considered a draft text requiring states parties to ‘guarantee’ the right of persons with disabilities to information.19 A number of proposed provisions were also more explicit on what was required of states parties in complying with their obligations under article 21 CRPD. For example, the European Disability Forum suggested that article 21(a) could require public authorities explicitly to make their websites accessible to persons with disabilities.20 The final text of article 21(a) CRPD was, however, drafted in general terms, referring to ‘information intended for the general public’, but without explicitly mentioning websites. Drafting the provision in such general terms is understandable, as any attempt for more specificity may be undermined by rapid technological developments. Yet, the provision could have benefited from an explicit reference to accessible websites (eg ‘providing information intended for the general public, including information available through the Internet’), as this could have strengthened the message that accessibility requirements should apply to all information intended for the general public, provided in all formats and through various platforms. The use of general terms was also adopted in article 21(b) CRPD, which requires states parties to ‘accept and facilitate’ the use of, inter alia, alternative communications in official interactions. However, the proposals of the Working Group (established by the Ad Hoc Committee to prepare the draft text of the Convention)21 went further, as they also required states parties to ‘undertake and promote the research, development and production of new technologies’, including ICTs and assistive technologies ‘suitable for persons with disabilities’.22 This proposal was not included in the final text of article 21, although Kayess and French (n 9) 14. Michael Ashley Stein and Janet Lord, ‘Participatory Justice, and the UN Convention on the Rights of Persons with Disabilities’ (2008) 13 Texas Journal on Civil Liberties and Civil Rights 167, 174. 15 Office of the United Nations High Commissioner for Human Rights (OHCHR), ‘Monitoring the Convention on the Rights of Persons with Disabilities: Guidance for Human Rights Monitors’ Professional Training Series no 17 (New York United Nations) 2010 24. 16 Anna Lawson, ‘The United Nations Convention on the Rights of Persons with Disabilities: New Era or False Dawn?’ (2007) 34 Syracuse Journal of International Law and Commerce 563, 616. 17 18 Kayess and French (n 9) 3. UNGA Res 56/168 (19 December 2001). 19 Secretariat for the Convention on the Rights of Persons with Disabilities (SCRPD), ‘Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (2008), available at: . 20 21 ibid Third Session 24 May to 4 June 2004. ibid Second Session 16 to 27 June 2003. 22 ibid Working Group 5 to 16 January 2004 (emphasis added). 13 14
Varney
Article 21
585
aspects of it are comprised in the general obligations of states parties under article 4(g), which calls on states parties to ‘undertake or promote research and development’ of new technologies, including ICTs and assistive technologies and to ‘promote’ the availability of these technologies.23 The Working Group proposal also required states parties to promote ‘other appropriate forms of assistance and support’ to ensure access to information, calling on the Ad Hoc Committee to consider expanding this requirement ‘to cover the provision and training of live assistance and intermediaries, such as Braille and caption transcribers, note-takers, sign language, and tactile communication interpreters, and readers’.24 These proposals, although welcomed by the World Blind Union, the World Federation of the Deaf,25 and the International Disability Caucus,26 were not included in the final text of article 21 CRPD. The negotiation process for article 21(c) CRPD (which requires states parties to ‘urge private entities that provide services to the general public’ to make these accessible) also involved proposals that could have provided a stronger level of protection for the interests of persons with disabilities. At the Third Session of the Ad Hoc Committee, some states parties (including Yemen and Jordan) proposed the adoption of mandatory language to ‘oblige’ or ‘require’ private entities to make their services accessible.27 Unfortunately, the final text of article 21(c) CRPD was limited to merely ‘urging’ private providers to make their services accessible.28 In the Third Session of the Ad Hoc Committee, national human rights institutions also proposed the inclusion of an additional text that would take into account the regulatory role of governments, requiring states parties to review regulatory provisions in the ICT sector and to take advantage of the accessibility standards developed by standard setting bodies. However, this additional text was not included in the final version of article 21(c) CRPD. The Third Session of the Ad Hoc Committee also witnessed the intervention from the Ontario Human Rights Commission and the European Disability Forum, that stressed the importance of mandatory accessibility requirements in public procurement.29 Once again, these provisions were not included in article 21(c) CRPD. Recommendations for mandatory language requiring ‘mass media service providers to make their services accessible to persons with disabilities’ and to ‘ensure that the design of Web pages is accessible by use of universal standards’ were also made, unsuccessfully, with regards to article 21(d).30 This provision was ultimately casted in non-mandatory terms, ‘encouraging’ states parties to provide accessible services. Proposals for article 21(e) CRPD (which calls on states parties to ‘recognise and promote the use of sign languages’) also included reference to sign language as ‘the natural language of deaf people’ in accessing information and communication.31 This latter reference was not comprised in the original text of article 21(e) CRPD. At the Seventh Session of the Ad Hoc Committee, the International Disability Caucus also proposed a Art 4(g) CRPD (emphasis added). SCRPD (n 19) (Working Group 5 to 16 January 2004). 25 ibid Third Session 24 May to 4 June 2004. 26 ibid Fourth Session 23 August to 3 September 2004. 27 28 ibid Third Session 24 May to 4 June 2004. Art 21(c) CRPD. 29 SCRPD (n 19) Third Session 24 May to 4 June 2004. 30 ibid Second Session 16 to 27 June 2003; for further discussion of the issue of standardization, see Natali Helberger, ‘Access to Technical Bottleneck Facilities—The New European Approach’ (2002) 46 Communication and Strategies 1; Catherine Easton, ‘Revisiting the Law on Website Accessibility in the light of the Equality Act 2010 and the UNCRPD’ (2012) 20 International Journal of Law and Information Technology 19. 31 SCRPD (n 19) Working Group, 5 to 16 January 2004. 23 24
Varney
586
Freedom of Expression and Opinion, and Access to Information
new paragraph ‘recognising Braille as the official script for blind persons’.32 This proposal was not included in article 21 CRPD, based on arguments that whilst ‘sign language is a distinct language’ Braille is ‘a script or a means of communicating a language and not a separate language’.33 The absence of these provisions from the final text of article 21 indicates a missed opportunity for providing a stronger level of protection for persons with disability in exercising their equal right to freedom and expression and opinion and access to information.
3. Paragraph 1 (Chapeau) Article 21 CRPD clarifies the obligations of states parties in promoting and protecting the equal enjoyment of the right to freedom and expression and opinion and access to information by persons with disabilities.34 This right is crucial for enabling ‘the full development of the person’ and its importance has been previously stressed in relation to article 19 ICCPR.35 Yet, whilst article 19 ICCPR adopted a negative formulation of this right (eg the right to hold opinions without interference),36 article 21 CRPD transforms this into a positive obligation on states parties, which are required to ‘take all appropriate measures’ to ensure the equal enjoyment of this right by persons with disabilities. This positive obligation is crucial in tackling the accessibility barriers encountered by persons with disabilities in accessing and imparting information.37 The CRPD recognizes the connection between the exercise of the right to freedom of expression and opinion and access to information and the development of an accessible infrastructure to facilitate the exercise of this right.38 It departs from the artificial distinction between civil and political rights (in the ICCPR, framed predominantly in negative terms to prevent state interference), and economic, social, and cultural rights (in the ICESCR, reliant mainly on positive formulations calling on state action),39 reaffirms the ‘indivisibility’ of all human rights and fundamental freedoms40 and creates hybrid rights.41 The call on states parties to provide accessibility is a key part of the ‘duty to respect, protect and fulfil equality rights’42 and reflects a substantive approach to equality. Whilst formal equality seeks to ensure that people are not treated unfavourably because of a specific characteristic and adopts a reactive approach in providing people with the right to sue of discriminated,43 substantive equality relies on a proactive approach. It seeks to ensure the social inclusion of under-represented groups by challenging discriminatory practices and promoting respect for difference.44 In the context of implementing article 21 CRPD, a substantive approach calls, inter alia, for proactive measures to dismantle the structural barriers faced by persons with disabilities when accessing information 33 34 ibid Seventh Session, 16 January to 3 February 2006. ibid. OHCHR (n 15) 24. UN HRC, General Comment 34: Article 19 (Freedoms of Opinion and Expression) UN Doc CCPR/ C/GC/34 (21 July 2011); see Bakur v Belarus UN Doc CCPR/C/114/D/1902/2009 (7 September 2015). 36 Art 19(1) ICCPR. 37 Amita Dhanda, ‘Constructing a New Human Rights Lexicon: Convention on the Rights of Persons with Disabilities’ (2008) 5 Sur: International Journal of Human Rights 43, 49. 38 39 40 ibid see Arts 9 and 21 CRPD. ibid Dhanda 55. Para (c) preamble CRPD. 41 Don MacKay, ‘The United Nations Convention on the Rights of Person with Disabilities’ (2007) 34 Syracuse Journal of International Law and Commerce 323, 330. 42 CRPD Committee General Comment No 2 para 14. 43 Sandra Fredman, ‘Equality: A New Generation?’ (2001) 30 Industrial Law Journal 145, 154–55. 44 ibid 163. 32 35
Varney
Article 21
587
(including information available via print, audio-visual media, the Internet or mobile phone devices) and when exercising their right to freedom of expression and opinion. Whilst recognizing that such measures have resource implications, the social approach to equality seeks to highlight the wider social costs of inaccessible information45 and the negative impact this may have on the exercise of other rights,46 including the right of access to justice,47 independent living and inclusion in the community,48 education,49 health,50 work and employment,51 participation in the political and public life52 and participation in the cultural life, recreation, leisure, and sport.53 In promoting respect for difference, the substantive vision of equality also calls for facilitating access to information for all persons with disabilities, including persons with sensory (visual and/or hearing), cognitive and dexterity disabilities. This vision of equality also includes the recognition that social change can be achieved only with the involvement of all stakeholders in society, including persons with disabilities and disabled people’s user led organizations.54 Article 21 CRPD requires states parties to ensure that persons with disabilities can exercise their equal right to ‘seek, receive and impart information and ideas’ through ‘all forms of communication of their choice’.55 The Convention relies on a broad concept of ‘communication’ defined in article 2 to include ‘languages, display of text, Braille, tactile communication, large print, accessible multimedia . . . written, audio, plain-language, human-reader and augmentative and alternative modes, means and formats of communication, including accessible [ICT]’. Article 2 also defines ‘language’ in non-exhaustive terms to include ‘spoken and signed languages and other forms of non-spoken languages’. As highlighted by the International Disability Alliance (IDA) CRPD Forum, this Convention is the first international treaty to recognize Braille as ‘the script for blind and deaf-blind persons . . . equal to other scripts in the world’ and to recognize sign languages as ‘languages . . . equal to spoken languages’.56 Furthermore, the broad definitions of ‘language’ and ‘communication’ encompassed in article 2 reflect a commitment to protecting the rights of all persons with disabilities, including persons with sensory, mobility, and cognitive disabilities. The CRPD marks a paradigm shift in the perception of persons with disabilities from objects of care to subjects of rights and reaffirms the interests of persons with disabilities in terms of human rights.57 The provision of accessible information plays a key role 45 Deborah Stienstra and Lindsey Troschuk ‘Engaging Citizens with Disabilities in eDemocracy’ (2005) 25 Disability Studies Quarterly. 46 For a detailed discussion of the importance of accessibility in a wide range of contexts (including access to libraries, e-books, e-learning, and open government) see Jonathan Lazar and Michael Ashley Stein (eds), Global Inclusion: Disability, Human Rights and Information Technology (University of Pennsylvania Press 2017). 47 48 49 50 Art 13 CRPD. Art 19 CRPD. Art 24 CRPD. Art 25 CRPD. 51 52 53 Art 27 CRPD. Art 29 CRPD. Art 30 CRPD. 54 Sandra Fredman, Human Rights Transformed: Positive Rights and Positive Duties (OUP 2008). 55 Art 21 CRPD. 56 International Disability Alliance (IDA) CRPD Forum, ‘Contribution to 2008 Thematic Study on Legal Measures for the Implementation of the CRPD’, Geneva 15 August 2008, 30 and 35. 57 Kayess and French (n 9) 1; see Oddny Arnardóttir and Gerard Quinn (eds), The UN Convention on the Rights of Persons with Disabilities—European and Scandinavian Perspectives (Brill 2009); Heiner Bielefeldt, ‘New Inspiration for the Human Rights Debate: The Convention on the Rights of Persons with Disabilities’ (2007) 52 Netherlands Quarterly of Human Rights 397; Eilionóir Flynn, Disabled Justice? Access to Justice and the UN Convention on the Rights of Persons with Disabilities (Ashgate 2015); Arlene Kanter, ‘The Promise and Challenge of the United Nations Convention on the Rights of Persons with Disabilities’ (2007) 34 Journal of International Law and Commerce 287; Aart Hendriks, ‘UN Convention of the Rights of Persons with Disabilities’ (2007) 14 European Journal of Health Law 273; Penelope Weller, ‘Human Rights and Social
Varney
588
Freedom of Expression and Opinion, and Access to Information
in empowering people to exercise their right to equal enjoyment of legal capacity in all aspects of life, protected under article 12 CRPD.58 This provision, which reaffirms the right to persons with disabilities to equal recognition as persons before the law,59 refers explicitly to, inter alia, the equal right of persons with disabilities to control their financial affairs and access financial credit, including bank loans and mortgages.60 It also recognizes that some persons with disabilities may require support in exercising legal capacity and calls on states parties to take ‘appropriate measures’ to provide such support,61 but includes no further details about the type of assistance that should be provided. The link between such forms of support and the need to provide information in accessible formats and facilitate alternative means of communication is, however, made by the CRPD Committee in its General Comment No 1 (to article 12 CRPD).62 Whilst recognizing that the concept of ‘support’ could encompass a wide range of provisions, the Committee confirms that it may comprise a requirement on public and private bodies to provide information in accessible formats and facilitate interaction through alternative means of communication.63 This may interpreted to include, inter alia, assistance in communicating with service providers,64 including through the provision of sign language interpretation, information in Braille or easy-to-read formats,65 or the acceptance of accompanying support persons when this is preferred by the persons with disabilities.66 The CRPD Committee stresses that when providing such support, public and private bodies must always respect ‘the individual autonomy and capacity of persons with disabilities to make decisions’.67 Furthermore, any need for support ‘must not be used as justification for limiting other fundamental rights’, including the right to vote.68 Without accessible information, communication, and services, persons with disabilities encounter barriers in exercising the right to equal enjoyment of legal capacity in all aspects of life,69 including participation in society as citizens. An effective protection of the equal rights of persons with disabilities to freedom of expression and opinion and access to information is crucial for facilitating the participation of persons with disabilities as citizens in civil society.70 As Drake notes, the exercise of citizenship rights is reliant on having the opportunity to participate in ‘the decisions that create the contours of a society’ and barriers to such participation lead to social
Justice: The Convention on the Rights of Persons with Disabilities and the Quiet Revolution in International Law’ (2009) 4 Public Space: The Journal of Law and Social Justice 74. 59 60 Art 12(2) CRPD. Art 12(1) CRPD. Art 12(5) CRPD. Art 12(3) CRPD. 62 CRPD Committee, General Comment No 1: Article 12 (Equal Recognition before the Law) UN Doc CRPD/C/GC/1 (19 May 2014). 63 ibid para 17. 64 Michael Bach, ‘The Right to Legal Capacity under the UN Convention on the Rights of Persons with Disabilities: Key Concepts and Directions for Law Reform’, Toronto, Institute for Research and Development on Inclusion and Society (IRIS 2009) 22. 65 Robert Dinerstein, ‘Implementing Legal Capacity under Article 12 of the UN Convention on the Rights of Persons with Disabilities: The Difficult Road from Guardianship to Supported Decision-Making’ (2012) 19 Human Rights Brief 8, 10. 66 Anna Nilsson, ‘Who Gets to Decide? Right to Legal Capacity for Persons with Intellectual and Psychosocial Disabilities’ Issue Paper, Council of Europe (February 2012) 19. 67 68 CRPD Committee, General Comment No 1 para 18. ibid para 29(f ). 69 ibid para 37. 70 Jennifer L Gregg, ‘Policy-Making in the Public Interest: A Contextual Analysis in the Passage of Closed- Captioning Policy’ (2006) 21 Disability and Society 537. 58 61
Varney
Article 21
589
exclusion.71 Consequently, the implementation of article 21 CRPD must be based on a framework of principles that reflect citizenship values, including equality, participation, inclusion, autonomy, and dignity.72 Persons with disabilities must be perceived as citizens with full entitlements in society rather than as disempowered victims in need of protection.73 The specific obligations on states parties under article 21 CRPD must be read in light of article 1, which states that the purpose of the Convention is to ‘promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity’. Article 21 must also be read in light of the CRPD general principles (which include ‘respect for inherent dignity, individual autonomy’,74 ‘full and effective participation and inclusion in society’,75 and ‘accessibility’)76 and the general obligations on states parties ‘to ensure and promote the full realization of all human rights and fundamental freedoms for all persons with disabilities’.77 The recognition of universal dignity can play a very important role in tackling the barriers faced by persons with disabilities in exercising their human rights, including the right to freedom of expression and opinion and access to information. Hanish comments that persons with disabilities often encounter ‘misrecognition’, as other people’s misconceptions are ‘mirrored back to them’, resulting in a ‘distorted’ image of themselves.78 Hanish calls for a change from misrecognition to recognition, including the ‘recognition of universal dignity’.79 The subsequent step must be a positive recognition of difference and the promotion of respect for human diversity.80 Finally, as Hanish notes, such recognition must be given force in the form of rights.81 The CRPD provides a benchmark for achieving these objectives, including through the acknowledgement of universal dignity,82 the promotion of respect for difference83 and the objective of ensuring the full and equal enjoyment of all human rights and fundamental freedoms by persons with disabilities.84 In the context of the right to freedom of expression and opinion and access to information, this includes an acknowledgement that all persons with disabilities (including sensory, cognitive, and dexterity disabilities) are entitled to full and equal enjoyment of these rights and that positive measures must be put in place in order to facilitate the exercise of these rights. It also includes an understanding of personal autonomy not as the ability to be separate from others but as the ability to interact with others, as equal access to social spaces enables individuals to engage in debate with others and shape their own views about the world.85 Article 21 must also be read in light of the general provisions of accessibility under article 9, to ‘take appropriate measures to ensure to persons with disabilities access, on an equal basis with others, to the physical environment, to transportation, to information Robert F Drake, Understanding Disability Policies (Palgrave Macmillan 1999). Varney (n 2); Feintuck and Varney (n 1) 250. 73 Deirdre M Smith, ‘Who Says You’re Disabled? The Role of Medical Evidence in the ADA Definition of Disability’ (2007) 82 Tulane Law Review 1, 71. 74 75 76 77 Art 3(a) CRPD. Art 3(c) CRPD. Art 3(f ) CRPD. Art 4 CRPD. 78 Halvor Hanish, ‘Recognising Disability’, in Jerome Bickenbach et al (eds), Disability and the Good Human Life (Cambridge University Press 2014) 124; see C Taylor, Philosophical Arguments (Harvard University Press 1995) 226. 79 80 81 82 ibid 126. ibid 129. ibid 133. Art 3(a) CRPD. 83 84 Art 3(d) CRPD. Art 1 CRPD. 85 Brad Areheart and Michael Ashley Stein, ‘Integrating the Internet’ (2015) 83 George Washington Law Review 449, 494. 71 72
Varney
590
Freedom of Expression and Opinion, and Access to Information
and communications, including information and communications technologies and systems’. The link between articles 9 and 21 CRPD is discussed in more detail below. It is important to stress, however, the significance of perceiving equality of access to information as a citizenship right,86 of focusing on enabling participation in society, on tackling the information barriers that led to involuntary exclusion from participation87 and on safeguarding autonomy and independent living as key components of universal dignity.88
4. Subparagraph (a) States parties are required to take all appropriate measures to ensure that persons with disabilities can exercise the equal right to freedom and expression and opinion and access to information, including by ensuring that information intended for the general public is provided in ‘accessible formats and technologies’.89 These specific obligations complement the general provisions on accessibility under article 9 CRPD. The provision of information intended for the general public in accessible formats and technologies is crucial in facilitating the involvement of the public in, inter alia, the social, cultural, political, and economic life.90 As noted by the CRPD Committee in its 2014 General Comment No 2 (to article 9 CRPD), accessibility is a precondition for independent living and for full and effective participation in society.91 Yet, as noted by the World Health Organization and the Work Bank in the ‘World Report on Disability’, people often encounter inaccessible information and the legislative frameworks in many countries do not go sufficiently far in safeguarding the rights of persons with disabilities to have access to information.92 Accessibility barriers to information intended for the general public include, inter alia, inaccessible government websites.93 Lazar and Jaeger are correct to express concerns about the implications of these barriers, as the increased reliance on the on-line environment for a wide range of activities (such as the submission of tax returns, participation in government consultations, application for government jobs) risks ‘multiplying’ the access barriers encountered by persons with disabilities.94 On a similar note, Lazar and Hochheiser point out that if ‘essential government services’ are moving to the on-line environment, and this move is made without concerns for accessibility, this may lead to the denial of such services to persons with disabilities.95 The on-line environment poses challenges if inaccessible, but also has the potential to increase opportunities for participation if designed with accessibility in mind.96 Actions such as an increased openness on Jaeger (n 4) 114. Interview with Guido Gybels, RNID (now Action on Hearing Loss) 17 August 2009. 88 89 Fredman (n 43) 155. Art 21(a) CRPD. 90 Gregg, ‘Policy-making in the Public Interests (n 70) 537; Anthony E Varona, ‘Changing Channels and Bridging Divides: The Failure and Redemption of American Broadcast Television Regulation’ (2004) 6 Minnesota Journal of Law, Science and Technology 1, 99. 91 CRPD Committee, General Comment No 2 para 1. 92 World Health Organization and World Bank, ‘World Report on Disability’ 2011. See CRPD Committee, General Comment No 2 para 7. 93 Jonathan Lazar and Paul Jaeger, ‘Reducing Barriers to Online Access for People with Disabilities’ (2011) 27 Issues in Science and Technology 68. 94 ibid. 95 Jonathan Lazar and Harry Hochheiser, ‘Legal Aspects of Interface Accessibility in the US’ (2013) 56 Communications of the ACM 74, 79. 96 Lazar and Jaeger (n 93). 86 87
Varney
Article 21
591
the measures adopted by governments to make their websites accessible and the adoption of effective measures to monitor and enforce the accessibility of these websites could play a significant role in eliminating the barriers encountered by persons with disabilities in the on-line environment.97 Measures designed to tackle inaccessible information reflect a social definition of disability, concerned with tackling the accessibility barriers encountered by persons with disabilities and the society’s failure to construct environments that respond to a wide range of abilities.98 Rather than focusing on the medical condition of individuals and a perception of technology as a solution that could ‘fix’ problems encountered by persons with disabilities, the social model is concerned with the wider social implications of inaccessible information and focuses on removing accessibility barriers.99 The positive obligations placed on states parties under article 21(a) CRPD indicate a substantive vision of equality to ensure social inclusion and a proactive approach for achieving social change.100 Article 21(a) CRPD calls for the provision of information ‘in accessible formats and technologies appropriate to different kinds of disabilities’ and sets the basis for a broad level of protection focused on assisting not only persons with sensory disabilities, but also persons with mobility and cognitive disabilities. This is in line with article 3(a), which emphasizes the equal worth of all human beings, irrespective of abilities.101 Article 21(a) does not provide further details of what could amount to the provision of information ‘in accessible formats and technologies appropriate to different kinds of disabilities’, nor does article 2 contain a definition of ‘accessibility’. However, as indicated in article 21(a), accessibility solutions must be focused on assisting all persons with disabilities to enjoy equal access to information intended for the general public. Persons with hearing disabilities could benefit, inter alia, from sign language interpretation (where meaning is conveyed through manual gestures, facial expression and body language)102 and the use of subtitles in television programmes and webcasts (where text is displayed on screen to represent sound effect or speech).103 Further measures could include clean audio programmes, where spoken words and background are broadcast on separate tracks, allowing people the option to de-select the background track.104 Measures to assist persons with visual disabilities could include, among others, audio description (where actions, locations, or characters are described using soundtrack pauses),105 information available in Braille (which is ‘a system of coding language in dots that can be detected by touch’)106 as well as information available in audio format. Further assistance could be provided by screen readers, which convert text into read aloud text displayed in computer screens, identify graphics and images accompanied by text labels, or convert text into Braille.107
ibid. Michael Oliver, The Politics of Disablement (Palgrave Macmillan, 1990); Michael Oliver and Colin Barnes, The New Politics of Disablement (2nd edn, Palgrave Macmillan 2012). 99 100 Stienstra and Troschuk (n 45). Fredman (n 54). 101 Art 3(a) CRPD; Kayess and French (n 9) 11. 102 103 Ofcom, Code on Television Access Services 13 May 2015 A4.38. ibid A4.11. 104 Royal National Institute of Blind People, ‘Response to the Draft Communication Bill’ 1 August 2002 Recommendation 25. 105 Ofcom (n 102) A4.22. 106 Katie Ellis and Gerard Goggin, Disability and the Media (Palgrave Macmillan 2015) 41. 107 Jonathan Bick, ‘Americans with Disabilities Act and the Internet’ (2000) 10 Albany Law Journal of Science and Technology 205, 216. 97 98
Varney
592
Freedom of Expression and Opinion, and Access to Information
Persons with cognitive disabilities could benefit from products and services that are easy to use and have clear instructions108 and for information issued to the public (including in the health and the financial sector) to be available in easy to read formats.109 Measures to assist persons with mobility disabilities could include keypads with well-spaced buttons, voice operated controls, and keypad controlled commands for websites (rather than only mouse-operated commands),110 as well as facial mice and touch screens.111 People with speech disabilities who may encounter difficulties in accessing technologies that require voice input, could benefit from devices where such input could be provided through alternative methods.112 Furthermore, all persons with disabilities would benefit from access to services where providers ensured that their staff received adequate training on equality and diversity113 and from access to products and services developed with the involvement of persons with disabilities and their representative organizations.114 The regulatory frameworks of states parties focused on facilitating equality of access to information should ensure that these frameworks protect the interests of all persons with disabilities and should move away from any hierarchy of protection.115 While there is considerable room for improvement in relation to accessibility provisions for persons with hearing disabilities (including the provision of clean audio as a soundtrack option)116 or visual disabilities (including the increased availability of audio described services), regulators tend to focus on sensory disabilities and place insufficient attention to the accessibility requirements of people with cognitive or dexterity disabilities.117 These accessibility concerns are perceived to be more complex, more diverse and harder to define.118 Yet, information plays a key role in the lives of all people and regulatory frameworks must take into account the diverse interests of all.119 Article 21(a) CRPD indicates that accessibility requirements must be provided ‘in a timely manner’, without providing further details on how this is to be achieved. Although the Convention has moved away from the artificial distinction between civil and political rights (framed in negative terms and subject to immediate realization)120 and economic, social, and cultural rights (reliant on positive formulations and subject to progressive realization),121 the inclusion of article 4(2) CRPD in the list of general obligations provides an unwelcome degree of ambiguity.122 Article 4(2) CRPD maintains the approach of progressive realization for economic, social, and cultural rights, adds that this is without prejudice to obligations under the CRPD subject to immediate realization,123 but fails to 108 Richard E Moberly, ‘The Americans with Disabilities Act in Cyberspace: Applying the “Nexus” Approach to Private Internet Websites’ (2004) 55 Mercer Law Review 963. 109 CRPD Committee, General Comment No 2, para 7. 110 Michael Finnigan Jr et al ‘Accommodating Cyberspace: Application of the Americans with Disabilities Act to the Internet’ (2007) 75 University of Cincinnati Law Review 1795. 111 Esther Baños García, ‘Assistive Technology and Disability’ in Edurne García Iriarte et al (eds), Disability and Human Rights: Global Perspectives (Palgrave Macmillan 2016) 177. 112 Anthony Tusler, ‘How to Make Technology Work: A Study of Best Practices in United States Electronic and Information Technology Companies’ (2005) 25 Disability Studies Quarterly. 113 114 CRPD Committee, General Comment No 2 para 7. ibid para 19. 115 Eliza Varney, ‘A Hierarchy of Disability Rights? A Comparative Examination of the Regulation of Digital Television in the United States of America and the United Kingdom’ (2009) 60 Northern Ireland Legal Quarterly 421. 116 117 118 Gybels (n 87). Varney (n 2). ibid. 119 Lynne Davis, ‘Riding with the Man on the Escalator: Citizenship and Disability’ in Melinda Jones and Lee Ann Basser Marks (eds), Disability, Divers-ability and Legal Change (Brill 1999) 71. 120 121 122 Art 2 ICCPR. Art 2(1) ICESCR. Dhanda (n 37) 55. 123 Art 4(2) CRPD.
Varney
Article 21
593
specify which provisions are subject to immediate realization and which are to be implemented progressively.124 This ambiguity is particularly problematic with regards to the ‘hybrid rights’ developed by the CRPD, which bring together civil and political rights and economic, social, and cultural rights.125 These include the provisions that safeguard equal right to freedom of expression and opinion and access to information, and call for the development of accessible infrastructures to facilitate the exercise of this right.126 The inclusion of article 4(2) is most likely due to cost-related implications associated with the implementation of the Convention.127 Nevertheless, as clarified by the Committee on Economic, Social and Cultural Rights in its General Comment No 3, the call for ‘progressive realisation’ requires states parties to take ‘concrete and targeted’ measures.128 Further clarification in the context of accessibility is provided by the CRPD Committee in its General Comment No 2, which confirms that accessibility barriers should be removed in a ‘continuous and systematic way, gradually, yet steadily’.129 Halvorsen rightly indicates that the requirement for the progressive realization of accessibility obligations requires states parties to demonstrate the efforts taken towards achieving these goals.130 While the CRPD does not employ the vocabulary of ‘regulatory’ and ‘distributive’ policy instruments, both strategies have a role in responding to these obligations.131 Halvorsen defines ‘redistributive policies’ as services aimed at redistributing resources among the public, with the objective of ‘equalising life chances’.132 These services, which may be financed, inter alia, by general taxation or by contributions from service providers proportionate with their annual turnover, may provide persons with disabilities with resources to ‘compensate for barriers in accessing mainstream ICT’ products or services.133 Another strategy towards ensuring the ‘progressive realisation’ of accessibility objectives includes ‘social regulation policies’ which seek to influence ‘the functioning of the market and the behaviour of non-governmental actors’ and which may rely on a range of measures, including legislative provisions requiring the accessibility of ICT products and services or the provision of financial incentives to industry players to invest in research and development for accessible ICTs.134 Halvorsen hints that in the search for accessibility solutions, one potential way forward would be to identify synergies between ‘social redistribution’ and ‘social regulation’ and move away from the current ‘paradox’ where either ‘social redistribution’ or ‘social regulation’ are prioritized by governments.135 Nevertheless, given the importance of accessible infrastructures for facilitating the exercise of the right to freedom of expression and access to information, the urgency in tackling accessibility barriers cannot be overstated.136 The financing of accessibility efforts could rely, as Gybels suggests, on a ‘toolkit of different funding mechanisms’.137 These could include, inter alia, some costs supported by 124 Gerard Quinn, ‘The United Nations Convention on the Rights of Persons with Disabilities: Toward a New International Politics of Disability’ (2009) 15 Texas Journal on Civil Liberties and Civil Rights 33, 44. 125 126 MacKay (n 41) 576. Arts 21(a) and 9(2)(g) and (h) CRPD. 127 Quinn (n 124) 44. 128 CESCR, ‘General Comment No 3: Article 2(1): The Nature of States Parties Obligations’ UN Doc E/ 1991/23 (14 December 1990). 129 CRPD Committee, General Comment No 2 para 27. 130 Rune Halvorsen, ‘Digital Freedom for Persons with Disabilities: Are Policies to Enhance e-Accessibility and e-Inclusion Becoming More Similar in the Nordic Countries and the US?’ (2010) 2 European Yearbook of Disability Law 77, 99. 131 132 133 134 135 ibid. ibid 78. ibid. ibid 79. ibid 102. 136 137 Myers (n 10) 307. Gybels (n 87).
Varney
594
Freedom of Expression and Opinion, and Access to Information
market players which should perceive accessibility costs as ‘perfectly acceptable’, ‘not an undue burden’, and ‘just part of doing business’, in the same way in which they perceive the costs of complying with health and safety requirements for products and services.138 Further funding mechanisms could include general taxation, specific taxation (in the form of a levy collected by service providers from service users and transferred into an accessibility fund) and a universal service model (where market players pay a levy proportionate with their annual turnover to cover the costs of providing accessibility services).139 These approaches would seek to spread accessibility costs fairly, tackle accessibility barriers, and facilitate equal access to information for all.140 Article 21(a) CRPD also indicates that accessibility requirements must be provided ‘without additional costs’ for persons with disabilities. This approach recognizes the close link between accessibility, availability, usability, and affordability.141 Therefore, it is important to ensure not only that ICT products and services are developed to be accessible for and usable by persons with disabilities and are available in the marker, but also that the cost of accessible ICTs does not place these ‘beyond the reach’ of persons with disabilities.142 A link can be made with article 4(1)(g), which calls on states parties to ‘undertake or promote research and development of, and to promote the availability and use of new technologies’, including ICTs ‘suitable for persons with disabilities’, prioritizing ‘technologies at an affordable cost’.143 Nevertheless, the CRPD does not provide any further details on how these intertwined objectives of accessibility, availability, usability, and affordability, are to be achieved. Although the Convention does not rule out the adoption of ‘add on’ accessibility solutions if necessary, articles 4(1)(f ) and 9(2)(h) would seem to indicate a preference for universal design, defined as the design of products and services to be usable by all, ‘to the greatest extent possible’ and ‘without the need for adaptation or specialized design’.144 Article 4(1)(f ) places a general obligation on states parties to undertake or promote research and development of ICT products or services based on universal design, while article 9(2)(h) calls on states parties to promote the integration of accessibility features at an early stage in the design and development of ICT products and services. Unlike ‘add on’ devices, which may require additional expenses from persons with disabilities and may render these products unaffordable,145 accessibility solutions integrated into mainstream products share accessibility costs among all consumers.146 In
ibid. ibid; for a more detailed discussion of Gybels’ proposed ‘toolkit of funding mechanisms’ see Varney (n 2). 140 Fredman (n 54) 179; Caroline Gooding, Disabling Laws, Enabling Acts: Disability Rights in Britain and America (Pluto Press 1994) 30. 141 Anna Lawson, ‘Challenging Disabling Barriers to Information and Communication Technologies in the Information Society: A UK Perspective’ (2010) 2 European Yearbook of Disability Law 131, 133. 142 ibid; Axel Leblois, ‘Implementing the Digital Accessibility Agenda of the Convention on the Rights of Persons with Disabilities: Challenges and Opportunities’ (2009) 1 European Yearbook of Disability Law 139, 141. 143 Art 4(1)(g) CRPD. 144 Art 2 CRPD; see David Lepofsky and Randal Graham, ‘Universal Design in Legislation: Eliminating Barriers for People with Disabilities’ (2009) 30 Statute Law Review 97; Mary Hums et al, ‘Universal Design: Moving the Americans with Disabilities Act from Access to Inclusion’ (2016) 26 Journal of Legal Aspects of Sport 36. 145 Halvorsen (n 130) 77. 146 Karen Peltz Strauss, ‘Past and Present: Making the Case for a Regulatory Approach to Addressing Disability Discrimination in the Provision of Emerging Broadband and Cable Technologies’ Broadband and Cable Television Law, Practising Law Institute, New York 2010, 943. 138 139
Varney
Article 21
595
contrast to add on solutions (reactive approach),147 universal design provides a positive message of accessibility as an integral part in the design and development of ICT products and services (proactive approach).148 Technology is developed to respond to ‘the full range of repertoires that exist in society’, based on the assumption that ‘all characteristics will be encountered’,149 to enable full and equal participation in society.
5. Subparagraph (b) The right of persons with disabilities to freedom of expression and opinion and access to information implies a right to ‘both understand and be understood’.150 In the context of ‘official interactions’, article 21(b) CRPD requires states parties to take all appropriate measures to accept and facilitate the use of ‘sign languages, Braille, augmentative and alternative communication, and all other accessible means, modes and formats of communication’, as chosen by persons with disabilities. Scheinwald rightly notes that this specific list of formats of communication is ‘significant’, as ‘it makes avoidance of implementation on grounds of vagueness, difficult to justify’.151 Furthermore, these formats of communication are comprised into a non-exhaustive list, aimed to ensure that these provisions remain relevant, as technology progresses and new formats of communication are developed. This provision would have been strengthened by the adoption of the text originally proposed by the Working Group established by the Ad Hoc Committee to prepare the draft Convention,152 which required states parties not only to facilitate the use of accessible means of communication, but also to promote the ‘provision and training of live assistance and intermediaries, such as Braille and caption transcribers, note-takers, sign language and tactile communication interpreters, and readers’.153 Regrettably, this detail was not included into the final text of article 21(b) CRPD, despite support from the World Blind Union and the World Federation of the Deaf.154 The inclusion of this proposal would have been an important step in addressing the challenge highlighted by the CRPD Committee that the number of qualified sign language interpreters is currently too low and the costs of their services tends to increase due to travel requirements.155 On a similar note, Ellis and Goggin note that the production of materials in Braille requires expertise and continues to be a ‘laborious and expensive process’.156 Consequently, states parties should not only accept the use of alternative formats of communication but should adopt a broad reading of the requirement to ‘facilitate’ such formats of communication by ensuring their availability and by investing in the training of interpreters and transcribers. The ‘official context’ of article 21(b) CRPD is of particular importance, as an effective implementation of this provision would provide deaf people with ‘the right to submit a Dobransky and Hargittai (n 5). Gerard Goggin and Christopher Newell ‘An End to Disabling Policies? Towards Enlightened Universal Service’ (2000) 16 The Information Society 127. 149 Kayess and French (n 9) 10. 150 SCRPD (n 19), Fourth Session, 23 August to 3 September 2004. 151 Aaron Scheinwald, ‘Who Could Possibly Be against a Treaty for the Blind?’ (2012) 22 Fordham Intellectual Property, Media and Entertainment Law Journal 445. 152 SCRPD (n 19) Third Session 24 May to 4 June 2004. 153 154 Ibid, Working Group 5 to 16 January 2004. ibid. 155 156 CRPD Committee, General Comment No 2 para 7. Ellis and Goggin (106) 41. 147 148
Varney
596
Freedom of Expression and Opinion, and Access to Information
document in sign language and receive a response in that language, receive information in court, transact in [public] offices and departments and receive consumer information in sign language’.157 Similar arguments can be made concerning, inter alia, the use of Braille, large print or plain language. The absence of a definition for ‘official interactions’ may raise questions about the exact scope of article 21(b). Further clarifications on the scope of this provision may be provided by the CRPD Committee in the future through its jurisprudence and/or by issuing a general comment on article 21. However, reading article 21(b) in light of the Convention’s purpose,158 general principles, and obligations,159 general duty on accessibility160 and specific provisions on, inter alia, access to justice, education, and health,161 would suggest a broad understanding of the concept of ‘official interactions’.
6. Subparagraph (c) Article 21(c) CRPD calls on states parties to ‘urge’ private providers of services to the general public, to provide these services and information in a manner that is accessible for, and usable by persons with disabilities. This is in contrast with the language originally proposed at the Third Session of the Ad Hoc Committee by some states parties, including Jordan and Yemen, when they called for mandatory provisions to ‘require’ private providers to make their services accessible.162 The non-mandatory language of ‘urging’ private actors to provide accessible services is likely to be less effective than mandatory language that would ‘require’ accessibility. Private service providers often lack the economic incentives to integrate accessibility features at the design stage for ICT products and services, due to the diverse accessibility requirements of persons with disabilities and the limited consumer power of individual groups of persons with disabilities.163 Ferri rightly notes that market players tend to be ‘hesitant’ to invest resources for the development of ICT products and services, as ‘the decision to innovate often takes place under great uncertainty’ and ‘the path from an idea to a ready product’ can be discouragingly long.164 Merely encouraging private actors to provide accessible services does not go far enough to overcome the accessibility barriers encountered by persons with disabilities to access information, including ICTs.165 Although the CRPD employs non-mandatory language with regards to private service providers, the language adopted for the obligations of states parties provides reasons for optimism. The requirements on states parties to ‘urge’ private actors to provide accessible services is part of the obligation on states parties to ‘take all appropriate measures’ to ensure that persons with disabilities can exercise their equal right of access to information.166 A link 157 Andrea R Ball ‘Equal Accessibility for Sign Language under the Convention on the Rights of Persons with Disabilities’ (2011) 43 Case Western Reserve Journal of International Law 759, 784. 158 159 160 Art 1 CRPD. Arts 3 and 4 CRPD. Art 9 CRPD. 161 162 Arts 13, 24, and 25 CRPD. SCRPD (n 19), Third Session 24 May to 4 June 2004. 163 Jennifer Simpson, ‘Inclusive Information and Communication Technologies for People with Disabilities’ (2009) 29 Disability Studies Quarterly; Mike Feintuck, ‘The Public Interest’ in Regulation (OUP 2004). 164 Delia Ferri, ‘Subsidising Accessibility: Using EU State Aid Law and Policy to Foster Development and Production of Accessible Technology’ (2015) 14 European State Aid Law Quarterly 51, 54. 165 Eliza Varney, ‘Disability Rights in the Communications Sector: An Examination of Digital Television Regulation in the United Kingdom’ (2008) 13 Communications Law 187; Eliza Varney, ‘The Protection of Age and Disability Rights in the Regulation of Digital Television in the European Union’ (2008) 17 Utilities Law Review 6. 166 Art 21 CRPD.
Varney
Article 21
597
can be made with article 4(e) CRPD, which calls on states parties to ‘take all appropriate measures to eliminate discrimination on the basis of disability by any person, organization or private enterprise’.167 Lewis accurately notes that this provisions sets ‘a high bar’, as it requires ‘not just an action plan, not some steps, not reasonable measures, but all appropriate ones’.168 Parallels can also be drawn with the accessibility requirements under article 9(2) (b), which calls on states parties to ‘take appropriate measures’ to ensure that private actors providing services to the general public ‘take into account all aspects of accessibility’ for persons with disabilities. In Nyusti and Takács v Hungary,169 a case challenging Hungary’s compliance with the CRPD, following the failure of a private bank to provide accessible ATMs, the CRPD Committee confirmed that Hungary failed to fulfil its obligations under article 9(2)(b) CRPD.170 The CRPD Committee noted, inter alia, that Hungary was ‘under an obligation to take measures to prevent similar violations in the future’, including by ‘establishing minimum standards for the accessibility of banking services provided by private financial institutions for persons with visual and other types of impairments’.171 As emphasized by the Committee in its General Comment No 2, when addressing accessibility issues, the focus is ‘no longer on legal personality and the public or private nature of this who own’ the infrastructure of ICT services, but on whether the ICT products and services are provided to the public.172 Persons with disabilities should, therefore, have ‘equal access to all goods, products and services that are open or provided to the public in a manner that ensures their effective and equal access and respects their dignity’.173 The CRPD Committee also confirms that the requirement on service providers to ensure that persons with disabilities enjoy access to services open to the public ‘should be seen from the perspective of equality and non-discrimination’.174 In addition to the anticipatory duty on states parties to provide accessibility to persons with disabilities as a group,175 denial of access to services open to the public could amount to ‘an act of disability-based discrimination’.176 The strength of these provisions is weakened by limitations entrenched in article 2 CRPD, which defines reasonable accommodation as ‘necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case’ to ensure equal enjoyment and exercise of human rights and fundamental freedoms by persons with disabilities.177 The ambiguity surrounding the meaning of the terms ‘disproportionate or undue burden’, as well as the choice of the word ‘burden’ in this context, are sources of concern.178 Nevertheless, the combined reading of articles 5(3) and 9 CRPD and the requirement for both proactive and reactive approaches for eliminating accessibility barriers has the potential to engender positive changes for facilitating access to information.179
Art 4(a) CRPD. Oliver Lewis, ‘Nyusti and Takacs v Hungary: Decision of the UN Committee on the Rights of Persons with Disabilities’ (2013) 4 European Human Rights Law Review 419, 420. 169 CRPD Committee, ‘Communication No 1/2010: Views of the Committee’ UN Doc CRPD/C/9/D/ 1/2010 (21 June 2013). 170 ibid para 10. 171 ibid para 10(2)(a); see Anna Lawson, ‘Accessibility Obligations in the UN Convention on the Rights of Persons with Disabilities: Nyusti and Takacs v Hungary’ (2014) 30 South African Journal on Human Rights 380. 172 173 174 CRPD Committee, General Comment No 2 para 13. ibid. ibid para 34. 175 176 Art 9 CRPD. Art 5 CRPD; see CRPD Committee, General C 2, paras 25 and 34. 177 178 Art 2 CRPD. Kayess and French (n 9) 27. 179 Anna Lawson, ‘Disability and Employment in the Equality Act 2010: Opportunities Seized, Lost and Generated’ (2011) 40 Industrial Law Journal 359; see also Arlene Kanter, ‘The Americans with Disabilities Act 167 168
Varney
598
Freedom of Expression and Opinion, and Access to Information
De Campos Velho Martel comments that ‘reasonable accommodation’ should be interpreted to mean ‘effective accommodation for the individual or group’, ensured, inter alia, through the ‘prevention and elimination of segregation, humiliation and stigma’.180 Such interpretation of ‘reasonable accommodation’ recognizes a clear link with the general principles of, inter alia, ‘respect for inherent dignity’181 and ‘respect for difference and acceptance of persons with disabilities as part of human diversity and humanity’.182 Despite the merits of the decision in Nyusti,183 discussed above, the CRPD Committee has missed an opportunity to explore in more depth the link between accessibility and the right to reasonable accommodation, with reference to the responsibility of states parties for the actions of non-state actors. Although the applicants in Nyusti relied on both article 9 CRPD (accessibility) and on article 5 CRPD (prohibition of disability- based discrimination), the CRPD Committee refused to consider the case under article 5 CRPD, despite its ‘clear relevance’,184 and provided no explanation for their refusal.185 Some guidance is, however, provided by the CRPD Committee decision in F v Austria,186 which confirms that while reasonable accommodation requirement concerns individuals, accessibility requirements concern groups, and the ex-ante duty to provide accessibility is unconditional.187 As clarified by the CRPD Committee, ‘an entity obliged to provide accessibility may not excuse the omission to do so by referring to the burden of providing accessibility to persons with disabilities’.188 This approach sends the message that accessibility should be perceived not through an economic lens focused on costs, but through a social lens focused on rights. Accessibility solutions are technically possible189 and their adoption and implementations relies on efforts from all key stakeholders, including policymakers, public and private service providers, persons with disabilities, and their representative organizations.190 Private service providers generally favour reduced regulation and oppose active regulatory intervention, tend to perceive the public as consumers (economic actors) rather than citizens (social actors)191 and overlook the wider social implications associated with access to ICTs.192 Instead of relying solely on market forces to deliver accessibility, a more effective response for ensuring accessibility in the ICT sector could be delivered through the complementary application of economic regulation (to protect consumer interests) and social regulation (to safeguard citizenship interests, ensure equal access to
at 25 Years: Lessons to Learn from the Convention on the Rights of People with Disabilities’ (2015) 63 Drake Law Review 819. 180 Leticia de Campos Velho Martel, ‘Reasonable Accommodation: The New Concept from an Inclusive Constitutional Perspective’ (2011) 14 Sur International Journal on Human Rights 84, 106. 181 182 183 Art 3(a) CRPD. Art 3(d) CRPD. CRPD/C/9/D/1/2010 (n 169). 184 185 Lewis (168) 421. ibid. 186 CRPD Committee, ‘Communication No 21/2014: Views of the Committee’ UN Doc CRPD/C/14/D/ 21/2014 (21 September 2015). 187 188 189 ibid para 8.4. ibid. Lazar and Jaeger (n 93). 190 Deborah Stienstra, et al ‘A Three-Way Dance: The Global Public Good and Accessibility in Information Technologies’ (2007) 23 The Information Society 149. 191 Eliza Varney, ‘Regulating the Digital Television Infrastructure in the EU: Room for Citizenship Interests?’ (2006) 3 SCRIPT-ed: Online Journal 221; Eliza Varney, ‘Winners and Losers in the Communications Sector: An Examination of Digital Television in the United Kingdom’ (2005) 6 Minnesota Journal of Law, Science and Technology 645. 192 Tony Prosser, The Limits of Competition Law—Markets and Public Services (OUP 2005) 28.
Varney
Article 21
599
information and facilitate participation in society). This discussion relies on an understanding of regulation as ‘sustained focused control’ by a public agency of activities ‘valued by a community’.193 Social regulatory measures to ensure accessibility could include, inter alia, the provision of financial incentives for market players to ‘invest in research and development of more accessible ICT products’, facilitating dialogue between industry players and disabled people’s user led organizations ‘to identify market opportunities and unmet consumer needs’, requiring all industry partners that contract with the government to comply with set accessibility standards and including accessibility requirements in public procurement, by ‘using the purchasing power of the Government to stimulate market actors to deliver accessible products’.194 The relevance of effective public procurement laws in incorporating accessibility requirements has also been highlighted by CRPD Committee in its General Comment No 2 (to article 9 CRPD), when it emphasized that it would be unacceptable if public funds were used to ‘create or perpetuate the inequality’ associated with inaccessible services and facilities.195 In fact, public procurement measures that include accessibility conditions are a proactive way for ensuring ‘de facto equality’ for persons with disabilities.196 This approach was echoed in the CRPD Committee decision in F v Austria, which, in the context of ICTs, called for public procurement measures to ensure the equal access of persons with disabilities to goods and services and to review and adopt these measures in consultation with persons with disabilities and disabled people’s user led organizations.197 Social regulatory measures should also be enhanced by the inclusion of ‘an individual right to accessibility through non- discrimination law’.198 Unfortunately, the CRPD stops short of articulating an individual right to accessibility. Despite the merits of the Convention in promoting accessibility and defining the obligations of states parties in removing accessibility barriers,199 the CRPD does not refer explicitly to a right to accessibility.200 An argument could be made, however, that such a right is implicit in the Convention, particularly when article 9 CRPD is read in light of article 1 (purpose) and other provisions with clearly articulated rights, such as article 5 (non-discrimination), article 19 (independent living), and article 21 CRPD (freedom of expression and opinion and access to information).
7. Subparagraph (d) Article 21(d) CRPD calls on states parties to ‘encourage’ the mass media to provide accessible services for persons with disabilities. Parallels can be drawn with the non-mandatory language adopted in article 9(2)(d), where states parties are asked to ‘promote’ the accessibility of new ICTs, including the Internet. The reliance on non-mandatory language (to ‘encourage’ or ‘promote’, rather than ‘ensure’ accessibility) places flexibility
193 Philip Selznick, ‘Focusing Organisational Research on Regulation’ in Roger G Noll (ed), Regulatory Policy and Social Sciences (University of California Press 1985) 363. 194 195 Halvorsen (n 130) 77. CRPD Committee, General Comment No 2 para 32. 196 197 198 ibid. CRPD/C/14/D/21/2014 (n 186) para 9(iii). ibid. 199 200 Art 9 CRPD. Lewis (n 168) 421.
Varney
600
Freedom of Expression and Opinion, and Access to Information
in the hands of the industry. Yet, market players tend to perceive the public as economic actors and interactions between service providers and the public varies, depending on people’s financial means. As Prosser rightly notes, markets constitute ‘a seriously inadequate means of protecting citizenship rights’, can only deal with quantifiable issues and do not place sufficient weight on substantive concerns for equality.201 Solely relying on market forces and reduced regulation is unlikely to remove the accessibility barriers encountered by persons with disabilities and it would be preferable to rely on the complementary application of economic and social regulation to achieve these goals. To protect the rights of persons with disabilities in the media sector, regulatory frameworks must address the issue of access to information as a citizenship right. Given the important role played by the media in ensuring an informed citizenry, it cannot be treated like any other industry202 and a higher degree of regulatory intervention is necessary to safeguard the democratic expectations of all citizens, including persons with disabilities. The public enjoys the right of access to information as citizens, irrespective of whether the providers of these services are public or private bodies. Regulators need to safeguard these citizenship rights and tackle not only the economic implications of any access barriers but also their social and political implications.203 Although article 21(d) CRPD merely requires states parties to ‘encourage’ the mass media to make their services available to persons with disabilities, this provision must be read in the context of the wider requirement on states parties under article 21 to ‘take all appropriate measures’ to ensure the equal access of persons with disabilities to information. The additional requirements on states parties under article 9 to ‘take appropriate measures’ to ensure that persons with disabilities can exercise their equal right of access to ICTs and under article 30(1)(b) to ensure the accessibility of television programmes, indicate that states parties cannot be complacent and rely solely on market players to address accessibility concerns. States parties should take active steps to regulate market players within their jurisdictions and remove accessibility barriers in the media sector. These objectives concern, inter alia, information communicated through radio, television, mobile phones, computers, and newspapers. The CRPD recognizes the centrality of the media in people’s lives and, as Ellis and Goggin comment, opens the possibility to ‘rethink’ the media to facilitate not only access to information but also the involvement of persons with disabilities in the production of information.204 Therefore, rather than perceiving accessibility as a means to enable people to be passive consumers of information, accessibility must be understood as an instrument to facilitate persons with disabilities in exercising their equal right of access to information and freedom of expression and opinion as active citizens. The elimination of accessibility barriers to services transmitted via the Internet is particularly important, given the widespread use of this medium as a source of information and its potential role in facilitating participation in society.205 The Internet can be seen 201 Prosser (n 192); Edward S Herman and Robert McChesney, The Global Media: The New Missionaries of Corporate Capitalism (Cassell 1997); Robert McChesney, Rich Media, Poor Democracy: Communications Politics in Dubious Times (New Press 2000). 202 Mike Feintuck, ‘Walking the High-wire: the UK’s Draft Communications Bill’ (2003) 9 European Public Law 105. 203 204 Varney (n 2) 14. Ellis and Goggin (n 106) 116. 205 Anthony Varona, ‘Toward a Broadband Public Interest Standard’ (2009) 61 Administrative Law Review 1, 8; Jeremy Rifkin, The Age of Access (Tarcher Putnam 2000) 234.
Varney
Article 21
601
as a component of the ‘public sphere’, which has been defined by Habermas as a place where citizens can engage in public debate, free from government or market controls.206 In this virtual place for debate, people can exchange ideas and shape their views about the world.207 As technological advances redefine ‘the infrastructure of discourse’,208 it is important to ensure that technology is developed with accessibility in mind and that no one is excluded from taking part in these exchanges of ideas.209 The negative consequences associated with lack of effective access to the Internet include, inter alia, reduced opportunities to participate in society, isolation210 and a denial of the equal right of persons with disabilities to ‘live in the Internet’ and benefit from all the economic, political, and social opportunities provided by this medium.211 Furthermore, as Lawson accurately comments, people who encounter barriers to access the Internet are ‘likely to fall into socially disadvantaged groups and to have lower incomes’ and people with disabilities are ‘disproportionately likely to fall into these categories’ and experience digital exclusion.212 Yet, ensuring the accessibility of services provided via the Internet poses a particular set of challenges, given the transnational nature of this medium and the consequent enforceability concerns and blurred lines of responsibility.213 Article 32(1) CRPD can assist in addressing some of the enforceability challenges associated with the regulation of the Internet, as it requires states parties to ‘undertake appropriate and effective measures’ to facilitate international cooperation to pursue the CRPD objectives (including by sharing information and best practices and cooperating in research). An effective implementation of the CRPD could assist in facilitating international cooperation to regulate transnational service providers (including providers of information through the Internet), to eliminate accessibility barriers and harmonize standards for accessible ICTs.214
8. Subparagraph (e) ‘Recognizing and promoting the use of sign languages’ For deaf people, the right to freedom of expression and opinion and access to information includes a right to communicate in sign language and to have this language officially recognized.215 Sign language is the natural language deaf people.216 It is a ‘linguistically
206 Jurgen Habermas, The Structural Transformation of the Public Sphere: An Inquiry into a Category of Bourgeois Society (Polity Press 1992); Jurgen Habermas, Between Facts and Norms (Polity Press 1997). 207 Monroe E Price, ‘Free Expression and Digital Dreams: The Open and Closed Terrain of Speech’ (1995) Critical Inquiry 64. 208 209 ibid. Varney (n 2) 11–12. 210 Katherine Rengel, ‘The Americans with Disabilities Act and Internet Accessibility for the Blind’ (2008) 25 John Marshall Journal of Information Technology and Privacy Law 543, 583. 211 212 Areheart and Stein (n 85) 449. Lawson (n 141) 131. 213 Uta Kohl, Jurisdiction and the Internet: Regulatory Competence over Online Activity (Cambridge University Press 2007); Lee A Bygrave and Jon Bing (eds), Internet Governance: Infrastructure and Institutions (OUP 2009); Alan Sears, ‘Protecting Freedom of Expression over the Internet: An International Approach’ (2015) 5 Notre Dame Journal of International and Comparative Law 171. 214 Eliza Varney, ‘Convention on the Rights of Persons with Disabilities: Ensuring Full and Equal Access to Information’ in Yvonne Donders and Tarlach McGonagle (eds), The United Nations and Freedom of Expression and Information: Critical Perspectives (CUP 2015). 215 SCRPD (n 19) Working Group 5 to 16 January 2004. 216 Anna-Miria Muhlke, ‘The Right to Language and Linguistic Development: Deafness from a Human Rights Perspective’ (2000) 40 Virginia Journal of International Law 705.
Varney
602
Freedom of Expression and Opinion, and Access to Information
complete method of manual communication’ that is ‘naturally accessible’ to persons who rely on their visual orientation ‘to gather information and to develop language’.217 Several sign languages developed worldwide, with their own grammatical structure, lexicon, and ability to convey complex and abstract ideas.218 Article 21(e) CRPD calls on states parties to take all appropriate measures to recognize and promote the use of sign languages, but does not provide further details of how this is to be achieved. The IDA CRPD Forum comments that the use of sign languages should be ‘recognised in legislation and/or public policies and programmes’ and that the promotion of sign languages includes ‘support for sign language publications, training, education, research and general usage’.219 The recognition and promotion of the use of sign languages must be read in light of, inter alia, the Convention’s general principles of ‘respect for difference and acceptance of persons with disabilities as part of human diversity and humanity’ and ‘respect for the right of children with disabilities to preserve their identities’.220 Furthermore, article 30(4) CRPD calls on states parties to ensure that persons with disabilities are entitled to equal ‘recognition and support of their specific cultural and linguistic identity, including sign languages and deaf culture’. The IDA CRPD Forum interprets this as a requirement for the accessibility of cultural materials, media programmes, films, literature, and cultural activities and for supporting, among others, ‘sign language theatres, poetry, songs and literature’.221 Article 21(e) CRPD must also be read in light of article 5(3) CRPD, which calls on states parties to take ‘all appropriate steps to ensure that reasonable accommodation is provided’ to ‘promote equality and eliminate discrimination’, (subject to the problematic ‘disproportionate or undue burden’ defence).222 A further link is made with article 9(2)(e) CRPD, which requires states parties to ‘take all appropriate measures’ to ‘provide forms of live assistance and intermediaries, including guides, readers and professional sign language interpreters, to facilitate accessibility to buildings and other facilities open to the public’. As stressed by the IDA CRPD Forum, the requirement to provide ‘professional sign language interpreters’ implies an obligation on states parties to ‘promote and develop sign language interpreter training, degree and registration, facilitate interpreter services and promote access to interpreters’.223 A link must also be made between with article 24(3) CRPD, which calls on states parties to ‘take appropriate measures’ to ‘facilitate the learning of sign languages and the promotion of the linguistic identity of the deaf community’ and to deliver education ‘in the most appropriate languages . . . for the individual’. These measures are necessary to enable persons with disabilities ‘to learn life and social development skills to facilitate their full and equal participation in education and as members of the community’. An effective implementation of these provisions is particularly important for deaf children under the age of five, who require regular exposure to sign language to ensure their full linguistic and cognitive development.224 Although the CRPD does not refer explicitly to a legal right to
218 219 ibid 761. ibid 713. IDA CRPD Forum (n 56) 32. 221 Art 3(d) and (h) CRPD; see Ball (n 157) 782. IDA CRPD Forum (n 56) 33. 222 223 Art 2 CRPD. IDA CRPD Forum (n 56) 32. 224 Tom Humphries et al, ‘The Right to Language’ (2013) 41 The Journal of Law, Medicine and Ethics 872. 217 220
Varney
Article 21
603
language, this right is implied in the Convention.225 As Muhlke accurately comments, the acquisition and use of sign languages must be perceived from a human rights perspective as ‘an indispensable tool’ for the enjoyment of all other human rights.226 In adopting a rights-based perspective, the focus must move beyond the cost of inclusion (eg costs associated with promoting the use of sign languages) and must consider the cost of exclusion caused by accessibility barriers and the wider social benefits of inclusion that result from removing these barriers.227 In implementing the CRPD, states parties are required to ‘closely consult with and actively involve persons with disabilities’.228 The implementation process is reliant on commitment from policymakers, regulators, market players, persons with disabilities, their representative organizations, and the general public.229 States parties must not overlook the urgency for eliminating accessibility barriers and for bridging the ‘digital divide’ between those with, and those without effective access to information.230
225 229
226 227 ibid 880. Muhlke (n 216) 759. Gybels (n 87). Lawson (n 16) 618. 230 Dobransky and Hargittai (n 5).
228
Art 4(3) CRPD.
Varney
Article 22 Respect for Privacy . No person with disabilities, regardless of 1 place of residence or living arrangements, shall be subjected to arbitrary or unlawful interference with his or her privacy, family, home or correspondence or other types of communication or to unlawful attacks on his or her honour and reputation. Persons with
disabilities have the right to the protection of the law against such interference or attacks. . States Parties shall protect the privacy of 2 personal, health and rehabilitation information of persons with disabilities on an equal basis with others.
1. Introduction and Background 2. Travaux Préparatoires 3. Paragraph 1 3.1 No Person with Disabilities 3.2 Regardless of Place of Residence or Living Arrangement 3.3 Arbitrary or Unlawful Interference 3.4 Unlawful 3.5 Arbitrary 3.6 Purpose 3.7 Public and Private Action 3.8 Privacy, Family, Home, Correspondence, and Communication 3.9 Privacy 3.10 Family 3.11 Home 3.12 Correspondence and Communication 3.13 Unlawful Attacks on Honour and Reputation of Persons with Disabilities 3.14 Right to Protection of Law Against Interference 4. Paragraph 2 4.1 Protection of Personal, Health, and Rehabilitation Information on an Equal Basis with Others 4.2 EU General Data Protection Regulation
604 606 608 609 609 610 610 611 612 613 613 614 618 619 619 622 622 625 625 626
1. Introduction and Background Article 22 of the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) requires states to protect the rights of persons with disabilities against unlawful and arbitrary interference with their privacy, both in general and in particular with respect to their personal, health, and rehabilitation information. The right to privacy is enshrined in a number of other international and regional instruments, including article 12 of the Universal Declaration of Human Rights (UDHR), article 17 of the International Covenant on Civil and Political Rights (ICCPR), article 11 land, giannoumis, kitkowska, and mikhaylova
Article 22
605
of the American Convention on Human Rights (ACHR), and article 8 of the European Convention on Human Rights (ECHR). At its core, article 22 of the CRPD follows the blueprint of article 17 of the ICCPR.1 This chapter examines the legal and normative obligations of states under article 22 of the CRPD to respect the right to privacy of individuals with disabilities, including in light of current technological trends and obligations for promoting information and communication technology (ICT) accessibility. Despite broad variation in national regulation of the right to privacy, the right can be understood in general as having both intrinsic and instrumental value.2 As an intrinisic value, privacy is an acknowledgement of the dignity owed to every individual—the idea that limiting access to the body, to information about the individual, and to the individual’s relationships is an essential aspect of respect for the person.3 For persons with disabilities, limiting access to disability status or other medical or health information is necessary to ensure respect for autonomy and individual dignity. For example, the Committee on the Rights of Persons with Disabilities (CRPD Committee) has emphasized the dignitary interests in privacy, condemining the display of children for ‘medical or charity purposes’ as violating their privacy rights.4 Privacy is not only important in and of itself as an acknowledgment of the dignity owed to every person, but also instrumentally valuable because of the role it plays in ensuring a range of other fundamental human rights.5 It protects ‘thoughts and opinions, religious beliefs, health, family relationships, friendships, and sexual encounters’ and also facilitates artistic expression and political discourse.6 In its most robust form, privacy is not just freedom from intrusion but a concept that ensures space for individuals to develop their capacity for self-determination.7 For persons with disabilities, the right to privacy plays a particularly important role in helping to guarantee rights such as the rights to equality, to freedom from discrimination, to employment, and to education, among others. This is because the right to privacy 1 The Ad Hoc Committee used Art 17 of the ICCPR as the basis for what is now Art 22 CRPD, ‘Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its fifth session’, Annex II, UN Doc A/ AC265/2005/2 (23 February 2005) para 92; see also Valentina Della Fina, ‘Article 22 [Respect for Privacy]’ in Valentina Della Fina, Rachele Cera, and Guiseppe Palmisano (eds), The United Nations Convention on the Rights of Persons with Disabilities: A Commentary (Springer 2017) 401–16, 404. 2 Daniel J Solove, ‘Conceptualizing Privacy’ (2002) 90 Cal L Rev 1087, 1145–46. 3 Solove identifies six overlapping conceptions of privacy in the literature: ‘(1) the right to be let alone; (2) limited access to the self; (3) secrecy; (4) control of personal information; (5) personhood; and (6) intimacy’ ibid 1094; see generally Daniel J Solove, Understanding Privacy (Harvard University Press 2010); Helen Nissenbaum, Privacy in Context: Technology, Policy, and the Integrity of Social Life (Stanford University Press 2010); Ruth Gavison, ‘Privacy and the Limits of Law’ (1980) 89 Yale LJ 421, 423, 429–33, 445–55 (defining privacy as the ability to limit the extent to which one is accessible to others). 4 CRPD Committee, ‘Concluding Observations on the Initial Report of Armenia’ UN Doc CCPR/C/ ARM/CO/1 (8 May 2017) paras 37–38. 5 Solove (n 2) 1145–46. 6 Frédéric Gilles Sourgens, ‘The Privacy Principle’ (2017) 42 Yale J Int’l L 345, 352. 7 Julie Cohen argues: ‘Privacy shelters dynamic, emergent subjectivity from the efforts of commercial and government actors to render individuals and communities fixed, transparent, and predictable. It protects the situated practices of boundary management through which the capacity for self-determination develops.’ Julie E Cohen, ‘What Privacy Is For’ (2013) 126 Harv L Rev 1904, 1905; see also Von Hannover v Germany (2005) 40 EHRR 1 para 50 (‘Furthermore, private life, in the Court’s view, includes a person’s physical and psychological integrity; the guarantee afforded by Art. 8 of the Convention is primarily intended to ensure the development, without outside interference, of the personality of each individual in his relations with other human beings.’).
land, giannoumis, kitkowska, and mikhaylova
606
Respect for Privacy
provides individuals with the right to control information about themselves, including information related to their disability status. The ability to control and limit discovery and disclosure of one’s disability status is essential in helping to protect the individual from discrimination and stigma.8 For example, keeping disability status or health information private can limit the extent to which an employer might use that information to terminate the employment of individuals with conditions that may require ongoing medical treatment or which are associated with stigma.9 Privacy regarding disability status also allows individuals with non-visibly discernable disabilities to avoid being subjected to the social or workplace stigma and differential treatment that might come with disclosure. The right to privacy is also uniquely vulnerable for individuals with disabilities because they must generally disclose their disability status and information related to their health and medical history in order to obtain accomodations from employers or receive social welfare benefits from the state.10 In such contexts, protecting the right to privacy means ensuring that information disclosed for one purpose is not shared further than necessary and is not used for purposes other than the claimed accomodation or benefit. Failure to do so can create opportunities for discrimination and social exclusion.
2. Travaux Préparatoires The right to privacy was identified early in the drafting process as essential to the protection of personal autonomy, a core concept of the CRPD. The draft elements submitted by the European Union (EU) during the second session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities, for example, identified privacy as a central element of individual autonomy and emphasized the obligation of states to protect individuals with disabilities from ‘arbitrary interference with their privacy, family, home or correspondence’.11 The Danish Institute for Human Rights circulated a discussion paper identifying privacy as a central issue in strengthening the personal autonmy of individuals with disabilities and as ‘highly relevant for persons with disabilities whose dependence on technical and personal aids may lead to situations of vulnerability’.12 Early proposals for the right to privacy during the second session combined privacy rights with family and parental rights. The article on privacy in the Bangkok Draft, generated by a regional workshop of experts in October 2003, included not only respect for privacy and home but also rights to protection of the family, to marry, and to choose one’s own living arrangements.13 The Chair’s Draft at the conclusion of the second 8 Jessica L Roberts, ‘Protecting Privacy to Prevent Discrimination’ (2015) 56 Wm & Mary L Rev 2097, 2099–100. 9 ibid 2145–46. 10 ibid 2157–58 (accommodation); Matthew Diller, ‘Entitlement and Exclusion: The Role of Disability in the Social Welfare System’ (1996) 44 UCLA L Rev 361, 387–88 (social welfare benefits). 11 European Union, ‘Elements for an International Convention’ Second Session, UN Doc A/AC265/2003/ CRP 13/Add 2 (2003). 12 ‘Letter from the Executive Director of the Danish Institute for Human Rights addressed to the Secretary of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2003/CRP/9 (26 May 2003). 13 ‘Bangkok Draft: Proposed Elements of a Comprehensive and Integral International Convention to Promote and Protect the Rights of Persons With Disabilities’ UN Doc A/AC265/2003/CRP/10 (2003).
land, giannoumis, kitkowska, and mikhaylova
Article 22
607
session proposed an article (then labelled article 16) that similarly combined protection of privacy with protection of the family, the right to marry, the right to sexuality and intimate relationships, reproductive rights, rights with respect to children, and rights to support and assistance in the care of children.14 In addition to rights regarding family relationships, the World Network of Users and Survivors of Psychiatry (WNSUP) also included in this article the right to ‘choice in living arrangements’ as well as the right to ‘choose and direct caregivers’.15 Subsequent drafts of the article continued to combine rights regarding privacy with familial, parental, and other relationship rights. A Working Group established in June 2003 by the Ad Hoc Committee to prepare and present a draft text of the CRPD prepared a draft article (relabeled as article 14) on ‘Respect for Privacy, the Home and the Family’. This working draft included two provisions. The first provision addressed privacy in general as follows: Persons with disabilities, including those living in institutions, shall not be subjected to arbitrary or unlawful interference with their privacy, and shall have the right to the protection of the law against such interference. States Parties to this Convention shall take effective measures to protect the privacy of the home, family, correspondence and medical records of persons with disabilities and their choice to take decisions on personal matters.16
The second paragraph of the draft article addressed the obligation to eliminate discrimination with respect to marriage and family relations.17 The third session of the Ad Hoc Committee took up draft article 14 as the basis for its discussion. A recurring suggestion by both states and NGOs was to split the two paragraphs of draft article 14 into two separate articles addressing, respectively, privacy and family.18 Other suggestions proposed during the third session included broadening ‘communication’ to incorporate ‘correspondence’.19 During the fourth session, both of these suggestions were renewed.20 During its fifth session in early 2005, the Ad Hoc Committee split the draft article 14 into two separate articles, relocating the protections for family and parenthood to article 14bis.21 It was during the fifth session that the Ad Hoc Committee also decided to conform the provisions of draft article 14 addressing privacy to the text of article 17 ICCPR, ‘with minor amendments’.22 The proposed amendments diverged from article 17 in two ways. The first difference was the inclusion of the phrase ‘correspondence or other types of communication’, which was added in order ‘to take into consideration more recent communication technologies’.23 14 ‘Chair’s Draft Elements of a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (December 2003), available at: . 15 ‘NGO Contributions to the Elements of a Convention’ UN Doc A/AC265/CRP13/Add 1 (2003). 16 ‘Draft Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2004/WG/CRP4 and Add 1, Add 2, Add 4, and Add 5 (2004). 17 ibid. 18 ‘Daily Summary of Discussions Related to Article 14’ Third Session of the Ad Hoc Committee Vol 4 No 4 (27 May 2004). 19 ibid. 20 ‘Daily Summary of Discussions Related to Article 14’ Fourth Session of the Ad Hoc Committee Vol 5 No 5 (27 August 2004). 21 22 ‘Report of the Ad Hoc Committee on its fifth session’ (n 1) para 90. ibid para 92. 23 ibid.
land, giannoumis, kitkowska, and mikhaylova
608
Respect for Privacy
Second, draft article 14 diverged from article 17 by including the phrase ‘regardless of place or living arrangements’ in order to ‘take into account the particular circumstances of people living with disabilities’.24 In proposing this language, the EU had emphasized the importance of protecting individuals with disabilities from intrusions into their privacy in all living arrangments, ‘to protect the privacy of a person wherever she or he may be—be it in a home, in a camping trailer, or within a family—not just in an institution’.25 By the conclusion of the fifth session, draft article 14 (which would later become article 22) was largely in its current form and generally tracked article 17 with the two aforementioned alterations. It read as follows: No persons with disabilities, regardless of place of residence or living arrangements, shall be subjected to arbitrary or unlawful interference with his or her privacy, family, home or correspondence or other types of communication, or to unlawful attacks on his or her honour and reputation. All persons with a disability have the right to the protection of the law against such interference or attacks.26
There was only one additional substantive change to this text. The article was expanded in the sixth session to include a second paragraph that addressed privacy of medical information. Protecting the privacy of health and medical information had been raised as an issue early in the negotiations,27 but was originally addressed at least in part through draft article 21.28 Draft article 21(1) included the obligation to ‘protect the privacy of health and rehabilitation information of persons with disabilities on an equal basis’.29 During the discussion of this article in the sixth session, delegates raised the question of whether 21(1) might already be covered in article 14, the Ad Hoc Committee noted the importance of ensuring that ‘the confidentiality of medical records was adequately covered under draft article 14’.30 In the seventh session, the Ad Hoc Committee included a specific paragraph on the protection of health, medical, and rehabilitation information as part of the right to privacy. The article was also renumbered as article 22.31 During this session, the Chair noted that no written proposals on this article had been submitted and he closed the ‘non-discussion’ of the article.32
3. Paragraph 1 Although the CRPD Committee has not issued a general comment on article 22, it has discussed article 22 in five concluding observations.33 In addition, because article 22 ibid. ‘Daily Summary of Discussion at the Fifth Session’ Fifth Session of the Ad Hoc Committee Vol 6 No 8 (2 February 2005). 26 ‘Report of the Ad Hoc Committee on its fifth session’ (n 1) para 93. 27 ‘NGO Contributions to the Elements of a Convention’ UN Doc A/AC265/CRP 13/Add 1 (2003). 28 ‘Draft Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2004/WG/CRP 4 and Add 1, Add 2, Add 4, and Add 5 (2004). 29 30 ibid. ibid paras 83, 84. 31 ‘Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its seventh session’ UN Doc A/AC265/2006/2 (13 February 2006). 32 ‘Ad Hoc Committee—Daily Summaries’ Vol 8 No 5 (20 January 2006). 33 CRPD Committee, ‘Concluding Observations on the Initial Report of Paraguay’ UN Doc CRPD/C/ PRY/CO/1 (15 May 2013) para 77; CRPD Committee, ‘Concluding Observations on the Initial Report of 24 25
land, giannoumis, kitkowska, and mikhaylova
Article 22
609
CRPD is based explicitly on article 17 ICCPR, the interpretation and application of article 17 provides an important basis for defining the scope and content of the right to privacy under the CRPD. The right to privacy is also enshrined in article 8 of the European Convention on Human Rights (ECHR), which protects an individual’s family life, home, and correspondence.34
3.1 No Person with Disabilities The opening language of article 22 CRPD is striking in its breadth and clarity. It provides that ‘no person with disabilities’ shall be subjected to an unlawful or arbitrary interference with his or her privacy. That provision, unqualified by comparisons to non-disabled persons, is consistent with the human rights model of disability represented in the CRPD, which Professor Degener contends offers a framework for understanding equality as ‘more than anti-discrimination’.35 Based on this, Weber contends that the provisions of the first paragraph of article 22 are ‘substantive and call for different treatment when the protections society generally affords are not sufficient to guard privacy and reputational interests of those who have disabilities’.36
3.2 Regardless of Place of Residence or Living Arrangement One of the ways in which article 22 CPRD differs from article 17 ICCPR is that article 22 explicitly protects the privacy of individuals with disabilities ‘regardless of place of residence or living arrangements’. Although article 17 ICCPR and article 8 ECHR also apply to any place where an individual resides or where her private life develops,37 this added text makes clear that individuals with disabilities enjoy the right to privacy no matter what their living arrangements may be. This particular language ‘was the product of extensive discussions over whether to single out institutional arrangements or to embrace broader terminology that would avoid reinforcing the stereotyped idea that people with disabilities will reside in institutional settings’.38 Under the CRPD, individuals with disabilities have the right to ‘choose their place of residence, as well as where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement’.39 At the same time, some individuals may live in situations in which their privacy may be more
Denmark’ UN Doc CCPR/C/DNK/CO/1 (29 October 2014) paras 50–51; CRPD Committee, ‘Concluding Observations on the Initial Report of Uganda’ UN Doc CCPR/C/UGA/CO/1 (12 May 2016) paras 44–45; Concluding Observations on Armenia paras 37–38; CRPD Committee, ‘Concluding Observations on the Initial Report of Latvia’ UN Doc CCPR/C/LVA/CO/1 (11 April 2014) paras 36–37. 34 European Convention for the Protection of Human Rights and Fundamental Freedoms, as amended by Protocols Nos 11 and 14, 4 November 1950 ETS 5 (ECHR). 35 Marc C Weber, ‘Protection for Privacy under the United Nations Convention on the Rights of Persons with Disabilities’ (2017) 6 Laws 10, 16; Theresia Degener, ‘Disability in a Human Rights Context’ (2016) 5 Laws 35, 38. 36 Weber (n 35) p 16. 37 HRCtee, ‘General Comment No 16: Article 17 (Right to privacy)’ UN Doc HRI/GEN/1/Rev 1 (1994) para 5; Giacomelli v Italy (2007) 45 EHRR 38 para 76. 38 Weber (n 35) 14; Weber adds that while the broader language was adopted, this ‘should not be taken as minimizing the unique threats to personal privacy that life in institutions poses for the people with disabilities who live in them’; ibid. 39 Art 19(a) CRPD.
land, giannoumis, kitkowska, and mikhaylova
610
Respect for Privacy
easily infringed, or in which this right may be at greater risk of arbitrary infringement.40 For example, the ECtHR found that screening the correspondences of an institutionalized person with a psychosocial disability violated their right to privacy under article 8 ECHR.41 States must take positive measures to ensure equal enjoyment of the right to privacy in all living arrangements, including those that may pose particular risks to the privacy of persons with disabilities.
3.3 Arbitrary or Unlawful Interference The right to privacy is not an absolute right, and any interferences with this right must meet specified conditions. The text of article 22 CRPD and article 17 ICCPR both provide that interferences with privacy are prohibited if they are ‘unlawful’ or ‘arbitrary’. Article 8 ECHR uses more precise language, requiring that any interference be: in accordance with the law and [] necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.42
Despite the textual differences between article 8 and articles 17 and 22, they are largely consistent in requiring that the interference be lawful and proportional to the end to be achieved. As will be discussed below, all three also require a legitimate purpose, but the ECHR and ICCPR/CRPD understand this requirement somewhat differently.
3.4 Unlawful Article 17 ICCPR and article 22 CRPD prohibit ‘unlawful’ interferences, and article 8 ECHR allows interferences only if they are ‘in accordance with law’. Thus, for an interference to be compatible with each of these treaties, it must have a basis in law. The HRCtee has explained this requirement as meaning ‘that no interference can take place except in cases envisaged by the law. Interference authorized by states can only take place on the basis of law, which itself must comply with the provisions, aims and objectives of the Covenant.’43 According to the ECtHR, however, ‘provided by law’ refers not just to the existence of the law but also its accessibility and foreseeability. As to the first requirement of accessibility, ‘the citizen must be able to have an indication that is adequate in the circumstances of the legal rules applicable to a given case’.44 The law must be clear
40 The World Network of Users and Survivors of Psychiatry proposed an amendment that would prohibit ‘discriminatory’ interferences with privacy because ‘[p]articularly in institutions, interference with privacy may be rationalized based on management considerations and thus not considered arbitrary or unlawful, but it is discriminatory because people not relegated to living in institutions are not subjected to such interference. When the particular form of institutionalization disproportionately affects people with disabilities, such practices may also constitute discrimination based on disability’; ‘Comments on the draft text, Draft Article 14: Respect for privacy, the home and the family’; see also Della Fina (n 1) 404. 41 Herczegfalvy v Austria (1993) 15 EHRR 437 paras 87–91; see also Lawrence O Gostin and Lance Gable, ‘The Human Rights of Persons with Mental Disabilities: A Global Perspective on the Application of Human Rights Principles to Mental Health’ (2004) 63 Md L Rev 20, 94–95. 42 Art 8(2) ECHR; in addition, the ECtHR requires safeguards to limit the scope of the privacy violation and protect against potential abuses; Rotaru v Romania Eur Ct HR App No 28341/95, paras 57 ff; MM v UK Eur Ct HR App No 24029/07 paras 195 ff; Liberty v United Kingdom (2009) 48 EHRR 1 paras 64–70. 43 General Comment No 16 (n 37) para 3. 44 Malone v United Kingdom (1985) 7 EHRR 14 para 66 (citations omitted).
land, giannoumis, kitkowska, and mikhaylova
Article 22
611
enough that affected individuals can understand its terms and foresee the consequences of the law’s application.45 For article 22 of the CRPD, the accessibility of the law must necessarily include accessibility within the meaning of the CRPD—namely, measures that ‘ensure to persons with disabilities access, on an equal basis with others’.46 Accessibility is aimed at promoting transparency and rejects secret provisions that limit the right.47 Transparency is important in ensuring that individuals are able to challenge interferences with their rights; one of the challenges of covert surveillance, for example, is that individuals often do not know their rights are subject to interference. Human rights experts have called for states to inform surveillance targets after the surveillance has ceased,48 although states have generally resisted these calls as impractiable.49 With respect to foreseeability, the ECtHR explained that the law must be ‘formulated with sufficient precision to enable the citizen to regulate his conduct: he must be able—if need be with appropriate advice—to foresee, to a degree that is reasonable in the circumstances, the consequences which a given action may entail’.50 The law must also be accessible prior to the interference,51 and the relevant laws must contain specific details regarding the circumstances in which interference can be considered legitimate.52 Finally, any governmental interference with the right to privacy must be predictable and general rules do not fulfil this requirement.53 The ECtHR has also found that ‘provided by law’ requires that the challenged interference be compatible with the rule of law. This means that ‘domestic law must be able to provide effective means of legal redress against arbitrary or incongruous interference by public authorities’.54
3.5 Arbitrary Under article 22, an interference is also prohibited if it is ‘arbitrary’. According to the HRCtee, the prohibition against arbitrariness ‘is intended to guarantee that even interference provided for by law should be in accordance with the provisions, aims and objectives of the Covenant and should be, in any event, reasonable in the particular circumstances,’55 and the arguments in support of the interference must ‘justify the conduct described’.56
45 Ilina Georgieva, ‘The Right to Privacy under Fire: Foreign Surveillance under the NSA and the GCHQ and Its Compatibility with Article 17 ICCPR and Article 8 ECHR’ (2015) 31 Utrecht J Int’l & Eur L 104, 119; see also Manfred Nowak, U.N. Covenant on Civil and Political Rights: CCPR Commentary (Engel 2005) 383. 46 Art 9(1) CRPD. 47 Georgieva (n 45) 118; see also Antonella Galetta and Paul De Hert, ‘Complementing the Surveillance Law Principles of the ECtHR with its Environmental Law Principles: An Integrated Technology Approach to a Human Rights Framework for Surveillance’ (2012) 10 Utrecht Law Review 64. 48 See eg ‘Report of the Special Rapporteur on the promotion and protection of the right to freedom of opinion and expression, Frank La Rue’ UN Doc A/HRC/23/40 (17 April 2013) para 82. 49 Lisl Brunner, ‘Digital Communications and the Evolving Right to Privacy’ in Molly K Land and Jay D Aronson (eds), New Technologies in Human Rights Law and Practice (CUP 2018). The 2015 California Electronic Communications Privacy Act (CalECPA), however, requires California government entities that obtain information through a warrant authorized under its terms to ‘furnish notice to the identified targets’. Susan Freiwald, ‘At the Privacy Vanguard: California’s Electronic Communications Privacy Act (CalECPA)’ (2018) 33 Berkeley Tech LJ (forthcoming). 50 51 Malone (n 44) para 66. Nowak (n 45) 381. 52 General Comment No 16 (n 37) para 8. 53 54 Amann v Switzerland (2000) 30 EHRR 843 para 76. Georgieva (n 45) 120. 55 General Comment No 16 (n 37) para 4. 56 Rafael Armando Rojas García v Colombia HRCtee Comm No 687/1996 (30 August 1995) para 10.3.
land, giannoumis, kitkowska, and mikhaylova
612
Respect for Privacy
In elaborating on the concept of reasonableness, the HRCtee has explained that it includes a requirement of proportionality. As the Committee explained in Toonen v Australia: ‘[it] interprets the requirement of reasonableness to imply that any inference with privacy must be proportional to the end sought and be necessary in the circumstances of any given case’.57 Thus, the HRCtee’s understanding of ‘arbitrary’ resembles the test used by the ECtHR, which requires that any limitations be proportionate to legitimate governmental interests.58
3.6 Purpose The ECtHR has maintained that interference with the right to privacy depends both on the specific aim being pursued and also the quality of the interference.59 Article 8 ECHR provides a list of permissible purposes for any privacy interference. These include interferences ‘in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others’.60 Thus, interferences with privacy are compatible with article 8 only if they pursue one of these aims. Article 17 ICCPR does not specify permissible purposes. This should be ‘contrasted with other ICCPR guarantees, such as articles 12 and 19, where limitations are permitted only for specified purposes’.61 The drafting history of the ICCPR indicates that the list of purposes was omitted to ensure that article 17 encompassed interferences by both public and private actors, and to avoid interfering with matters within the domestic jurisdiction of the state.62 The absence of enumerated purposes indicates that states have somewhat broader discretion in identifying what constitutes a legitimate purpose under article 17 ICCPR (and by extension article 22 CRPD) than under article 8 ECHR.63 Nonetheless, the HRCtee has considered the purpose of the interference as part of the limitation on arbitrary interference. In Canepa v Canada, the HRCtee explained that ‘arbitrariness extends to the reasonableness of the interference with the person’s right under article 17 ICCPR and its compatibility with the purposes, aims and objectives of the Covenant’.64 In General Comment No 16, the HRCtee also noted that the prohibition on arbitrariness guarantees that interferences ‘be in accordance with the provisions, aims and objectives of the Covenant and should be, in any event, reasonable in the particular circumstances’.65 For example, in Aumeeruddy-Cziffra v Mauritius, the HRCtee addressed a Mauritian law that provided differential residential status for alien men and women married to citizens. In finding the law inconsistent with the ICCPR, the HRCtee explained: ‘Whether or not the particular interference could as such be justified if it were applied without 57 Toonen v Australia HRCtee Comm No 488/1992 UN Doc CCPR/C/50/D/488/1992 (31 March 1994) para 8.3. 58 Nasri v France (1996) 21 EHRR 458 para 41. 59 Segerstedt-Wiberg v Sweden (2007) 44 EHRR 2 para 88. 60 Art 8(2) ECHR. 61 Sarah Joseph, Jenny Schultz, and Melissa Castan, The International Covenant on Civil and Political Rights: Cases, Materials, and Commentary (OUP 2000) 355. 62 Report of the Third Committee UN Doc A/4625 (8 December 1960) para 39; see also G Alex Sinha, ‘NSA Surveillance Since 9/11 and the Human Right to Privacy’ (2013) 59 Loyola L Rev 861, 907. 63 cf Toonen (n 57) (separate concurring opinion of Wennergren). 64 Canepa v Canada HRCtee Comm No 558/1993 UN Doc CCPR/C/59/D/558/1993 (1993) para 11.4 (emphasis added). 65 General Comment No 16 (n 37) para 4 (emphasis added).
land, giannoumis, kitkowska, and mikhaylova
Article 22
613
discrimination does not matter here. Whatever restrictions are placed on a right guaranteed by the Covenant, this has to be done without discrimination on the ground of sex.’66 Thus, while article 17 does not specify the specific kinds of purposes that will be permitted to justify an interference with privacy, a state cannot rely on a purpose that would be incompatible with the ICCPR.67 Because article 22, like article 17, does not contain a list of legitimate purposes, the state should be viewed as having greater discretion in articulating what might justify an interference with the right. These purposes must be compatible with the CRPD, however, and in no instance could a purpose be used to justify an interference contrary to the object and purpose of the CRPD.
3.7 Public and Private Action The obligations of article 22 apply to both public and private action. The CRPD Committee’s concluding observations have made clear that the obligations of the CRPD extend not only to the state but also to third (private) parties. Among other things, the Committee has critiqued the data protection and privacy practices of hospitals and institutions68 and expressed the need for data protection protocols in the health and banking sectors.69 Similarly, in interpreting the scope of article 17 ICCPR in General Comment No 16, the HRCtee has said that the private life of the person should be protected from attacks ‘whether they emanate from state authorities or from natural or legal persons’.70 Interferences can occur not just by virtue of the explicit actions of public or private actors, but also by the way in which private actors design and implement the technology on which indivduals with disabilities rely. These ‘by design’ privacy violations as well as the potential for security and data breaches may affect users’ well-being, expose them to risks, and result in harms.71
3.8 Privacy, Family, Home, Correspondence, and Communication Article 22 CRPD protects the right to ‘privacy, family, home or correspondence and other types of communication’ from arbitrary or unlawful interferences. Although the CRPD does not define these terms, General Comment No 16 on the right to privacy under the ICCPR as well as other relevant sources, including the caselaw of the ECtHR on article 8 ECHR, provide clarification.
Aumeeruddy-Cziffra v Mauritius HRCtee Comm No 35/1978 (9 April 1981) para 9.2. This also follows from Art 5(1) ICCPR, which provides that nothing in the Covenant ‘may be interpreted as implying for any State, group or person any right to engage in any activity or perform any act aimed at the destruction of any of the rights and freedoms recognized herein or at their limitation to a greater extent than is provided for in the present Covenant’. 68 Concluding Observations on Latvia paras 36–37 (psychiatric hospitals and institutions); Concluding Observations on Denmark paras 50–51 (psychiatric hospitals transferring information to third parties); Concluding Observations on Armenia paras 37–38 (display of children ‘for medical or charity purposes’). 69 Concluding Observations on Uganda paras 44–45. 70 General Comment No 16 (n 37) para 1. 71 See generally Mary Flanagan, Daniel C Howe, and Helen Nissenbaum, ‘Embodying Values in Technology: Theory and Practice’ in Jeroen van den Hoven and John Weckert (eds), Information Technology and Moral Philosophy (CUP 2008) 322; Jan Holvast, ‘History of Privacy’ in Vashek Matyáš, Simone Fischer- Hübner, Daniel Cvrček, and Petr Švenda (eds), The Future of Identity in the Information Society (Springer 2009) 13. 66 67
land, giannoumis, kitkowska, and mikhaylova
614
Respect for Privacy
In Europe, aspects of individual privacy are also protected under the General Data Protection Regulation (GDPR),72 which has been explicitly formulated as a separate right on par with the right to respect for private life under the Charter of Fundamental Rights of the European Union.73 The operation, function, and legal nature of the GDPR and data protection in general is analysed in detail in the commentary to article 31(1)(a) CRPD in this volume. Data privacy is explicitly protected under paragraph 2 of article 22 CRPD; as a result, data protection principles and the GDPR will be discussed further in that section.
3.9 Privacy Article 22 CRPD protects individuals with disabilities from ‘arbitrary or unlawful interference with his or her privacy, family, home or correspondence or other types of communication’. The use of the term ‘or’ in both article 22 CRPD and article 17 ICCPR might initially give the impression that these elements are independent and mutually exclusive alternatives. Nonetheless, commentators have recognized that ‘privacy’ is a broader term that encompasses the protection of the enumerated terms family, home, correspondence.74 Neither the CRPD nor the ICCPR define the term ‘privacy’, a term that is notoriously difficult to define and which has changed considerably over time.75 Among other things, privacy protects a range of individual autonomy interests, including the ability to exercise control over one’s body and personal information.76 Dignity is a central value protected by the right to privacy. Although most of the concluding observations of the CRPD Committee focus on the protection of health and rehabilitation information under article 22(2), it has addressed the dignitary interests embedded in the protection of privacy more broadly. In its concluding observations on Armenia, for example, the CRPD Committee expressed concern that ‘children with disabilities are publicly displayed for medical or charity purposes’, and urged the state to adopt more rigorous privacy protections to guard against this kind of violation.77 Although the HRCtee in General Comment No 16 refrains from defining ‘privacy’, it noted in Coeriel and Aurik v The Netherlands that ‘the notion of privacy refers to the sphere of a person’s life in which he or she can freely express his or her identity, be it by entering into relationships with others or alone’.78 Commentators on the ICCPR have defined privacy as ‘freedom from unwarranted and unreasonable intrusion into activities . . . belonging to the realm of individual autonomy’.79 72 Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC, OJ L 119 (4 May 2016). 73 Charter of Fundamental Rights of the European Union, 2012/C 326/02 (6 October 2012); Maria Tzanou, ‘Data Protection as a Fundamental Right Next to Privacy? “Reconstructing” A Not So New Right’ (2013) 3 International Data Privacy Law 88–99; Gloria González Fuster, The Emergence of Personal Data Protection as a Fundamental Right of the EU (Springer 2014). 74 Sinha (n 62) 912; Nowak (n 45) 385–92. 75 ‘Report of the Special Rapporteur on the Right to Privacy, Joseph A Cannataci’ UN Doc A/HRC/31/64 (8 March 2016) para 20. 76 Helen Nissenbaum, Privacy in Context: Technology, Policy, and the Integrity of Social Life (Stanford University Press 2010) 69–70. 77 Concluding Observations on Armenia paras 37–38. 78 Coeriel v The Netherlands HRCtee Comm No 453/1991 UN Doc CCPR/C/52/D/453/1991 (1994) para 10.2; see also Joseph et al (n 61) 348–52. 79 Georgieva (n 45) 115–16.
land, giannoumis, kitkowska, and mikhaylova
Article 22
615
Article 8 ECHR protects ‘private life’, which the ECtHR has found to include a variety of different aspects of privacy. These include the physical integrity of a person,80 physical and social identity,81 ethnic identity,82 the right to personal development and to relationships with others,83 the right to a name,84 gender identification, sexual orientation, and sexual life,85 mental health,86 the right to one’s image,87 and the right to data protection.88 According to the ECtHR, article 8 is about much more than the secrecy of information, but also includes ‘the right to choose certain intimate aspects of one’s life, free of government intrusion’.89 Article 8 ECHR protects ‘private life’ as opposed to the protection of ‘privacy’ encompassed in article 17 ICCPR and article 22 CRPD. Given the similarity of coverage between the two articles, article 17 and article 8 have similar scope, despite this difference in terminology.90 Members of the Ad Hoc Committee argued in favour of ‘privacy’ rather than ‘private life’ because ‘privacy’ is ‘more comprehensive and used in more human rights texts’; others argued that ‘privacy’ would be broader only if it was given a broad interpretation.91 Regardless, article 22 CRPD may be somewhat more limited than its equivalents under article 17 ICCPR or article 8 ECHR simply by virtue of its drafting history. Firstly, article 22 explicitly does not cover protection for marriage, parenthood, family, and other relationships. These issues had initially been combined with the protection of privacy in initial drafts of the article, but the Ad Hoc Committee decided to split these into two articles; as a result, home and family are protected in article 23 CRPD. Secondly, the CRPD includes several fairly explicit protections for certain aspects of privacy, which means that the catch-all phrase of ‘privacy’ need not do all this work. For example, article 31 CRPD requires states to ‘[c]omply with legally established safeguards, including legislation on data protection, to ensure confidentiality and respect for the privacy of persons with disabilites’ in collecting statistical information.92 Similarly, the addition of paragraph 2 in article 22 CRPD, which is discussed below, explicitly protects personal, health, and rehabilitiation information. This means such information is not solely protected under the concept of ‘privacy’. Although other provisions of the CRPD protect specific dimensions of privacy, the phrase ‘privacy’ continues to play an important role in protecting individuals and dignity. The flexibility of the term is particularly important in ensuring that article 22 can evolve as new privacy threats emerge with technological innovations. For example, advances in information and communication technology—ranging from growth in the capacity to store, communicate, and compute information to the rapid development, scaling, and X and Y v the Netherlands (1986) 8 EHRR 235 para 22. Mikulić v Croatia Eur Ct HR, App No 53176/99 (7 February 2002), para 53. 82 S v the United Kingdom (2009) 48 EHRR 50. 83 Mikulić (n 81); X and Y (n 80). 84 Burghartz v Switzerland (1994) 18 EHRR 101; Guillot v France Eur Ct HR App No 22500/93. 85 Dudgeon v the United Kingdom (1983) 5 EHRR 573; B v France (1993) 16 EHRR 1; Peck v the United Kingdom (2003) 36 EHRR 41. 86 87 Bensaid v the United Kingdom (2001) 33 EHRR 10. Sciacca v Italy (2006) 43 EHRR 20. 88 Z v Finland (1998) 25 EHRR 371. 89 Georgieva (n 45) 115. 90 ibid. 91 ‘Daily Summary of Discussion at the Fifth Session’ (n 25). 92 Art 31(1)(a) CRPD. 80 81
land, giannoumis, kitkowska, and mikhaylova
616
Respect for Privacy
mass consumption of portable sensors93—have brought new challenges for privacy,94 and the meaning of ‘privacy’ under the CRPD must keep pace with these developments.95 These developments have had particularly significant impacts on the right to privacy of individuals with disabilities.96 Individuals with disabilities often rely on information and communication technology to participate in social life and to work, learn, and navigate their physical environments on an equal basis with others.97 The greater reliance of individuals with disabilities on technology means they are differentially impacted by the privacy risks associated with technological advances. For example, environmental sensors,98 tagging,99 or home monitoring technology100 all have significant benefits for persons with disabilities; at the same time, these technologies collect significant volumes of data that can in the event of a privacy breach be used in harmful ways. The greater reliance on technology by individuals with disabilities means that more information about their activities is available in digitized form, which can be easily shared and manipulated. Internet of Things (IoT) devices, such as interconnected applications and smart homes, have the potential to collect ever more increasing volumes of data. In such environments, which often lack traditional screen-based interfaces, data collection is ubiquitous, and it is difficult to provide users with adequate notice about the processing of their personal information. An individual who relies on sensors to navigate her physical environment may have data collected about her movements around her residence. If this information is the subject of a security breach, the individual could become the victim of criminal or fraudulent activity. An individual who does not use sensors in this manner will not experience the same risks. Further, the provisions of international and domestic law that are designed to ensure that individuals with disabilities enjoy their rights on an equal basis with others, may themselves entail privacy risks. For example, technology plays a significant role in promoting accessibility, which is important both as a freestanding right and as a precondition for the realization and enjoyment of rights protected under the CRPD.101 As the CRPD Information Technology Union, Measuring the Information Society (2016). Bert-Jaaps Koops and Ronald Leenes, ‘Code and the Slow Erosion of Privacy’ (2005) 12 Mich Telecomm & Tech L Rev 115; Michael L Tudor, ‘Note: Protecting Privacy of Medical Records of Employees and Job Applicants in the Digital Era Under the Americans with Disabilities Act’ (2013) 40 N Ky L Rev 635, 636. 95 See generally Jonathan Lazar, Brian Wentz, and Marco Winckler, ‘Information Privacy and Security as a Human Right for People with Disabilities’ in Jonathan Lazar and Michael Ashley Stein (eds), Disability, Human Rights, and Information Technology (U Penn Press 2017). 96 ibid. 97 ibid 200, eg recent clinical research has shown that persons with psychosocial disabilities, such as bipolar disorder, use social media platforms such as Facebook for self-care. See generally John A Naslund, Kelly A Aschbrenner, Lisa A Marsch, and Stephen J Bartels, ‘The Future of Mental Health Care: Peer-to-Peer Support and Social Media’ (2016) 25 Epidemiology and Psychiatric Sciences 113; Sagar V Parikh and Paullina Huniewicz, ‘E-Health: An Overview of the Uses of the Internet, Social Media, Apps, and Websites for Mood Disorders’ (2015) 28 Current Opinion in Psychiatry 13; see also Gerard Goggin, ‘Communication Rights and Disability Online: Policy and Technology after the World Summit on the Information Society’ (2015) 18 Information, Communication & Society 327. 98 Rolf H Weber, ‘Internet of Things–New Security and Privacy Challenges’ (2010) 26 Computer Law & Security Rev 23. 99 Katherine Delaney, ‘Privacy Year in Review: America’s Privacy Laws Fall Short with RFID Regulation’ (2005) 1 I/S: A Journal of Law and Policy for the Information Society 543. 100 Jillisa Bronfman, ‘Weathering the Nest: Privacy Implications of Home Monitoring for the Aging American Population’ (2016) 14 Duke L Tech Rev 192. 101 CRPD Committee, ‘General Comment No 2: Article 9 (Accessibility)’ UN Doc CRPD/C/GC/2 (22 May 2014) para 36. 93 94
land, giannoumis, kitkowska, and mikhaylova
Article 22
617
Committee has noted, the accessibility of information is necessary for the fulfilment of a variety of rights, including rights to freedom of expression, to education, and to participation in culture.102 States are also obligated to seek ways of building accessibility into the design of both physical and digital spaces.103 However, the CRPD Committee’s focus on the design of technology as a mechanism for social participation does not consider the impact that obligations for ICT accessibility may have on the realization of other rights, such as the right to privacy. An individual’s right to privacy may be violated if efforts to ensure accessibility proceed without consideration of the potential privacy impacts. Obligations to ensure the accessible design of ICT must be taken into consideration in light of the privacy-related contexts and activities in which persons with disabilities engage. The Marrakesh Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired, or Otherwise Print Disabled (the Marrakesh Treaty) explicitly affirms the importance of ensuring privacy while fostering accessibility. The treaty requires states to create copyright exceptions to enable print disabled individuals and organizations such as libraries to create accessible format copies of printed works.104 Implementing this exception is one way in which states can meet their obligation under the CRPD to ensure that individuals with disabilities are able to participate in culture.105 Nonetheless, the privacy of individuals who take advantage of these exceptions may be placed at risk.106 Article 8 of the Marrakesh Treaty requires states to ensure that in the process of promoting accessibility, the privacy rights of individuals are not harmed.107 The process of seeking accommodation to vindicate rights under international and domestic law can also create privacy risks for individuals with disabilities. For example, reasonable accommodations help ensure that employment opportunities are realized by individuals with disabilities on an equal basis with others, but the process of obtaining accommodation often requires individuals to share information about the nature of their disability with their employer.108 In some instances, employers may inappropriately seek information about an employee’s health and health risks in order to foreclose a claim that they failed to ensure reasonable accommodations.109 States must take positive measures to ensure that individuals with disabilities do not have to choose between protecting their privacy and claiming rights to which they are
103 ibid paras 37, 38, 44. Art 9(2)(h) CRPD. Marrakesh Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired, or Otherwise Print Disabled, VIP/DC/8 REV adopted 27 June 2013, entry into force 30 September 2016. 105 Art 30(3) CRPD; see also Laurence R Helfer, Molly K Land, Ruth L Okediji, and Jerome H Reichman, The World Blind Union Guide to the Marrakesh Treaty: Facilitating Access to Books for Print-Disabled Individuals (OUP 2017) 1. 106 The treaty envisions that entities authorized to make accessible format copies ‘to maintain due care in, and records of, its handling of copies of works.’ Marrakesh Treaty (n 104) Art 2(c)(iv) . Although an authorized entity is allowed to ‘follow its own practices’ in determining how best to keep such records while also protecting the privacy of individuals with disabilities, ibid Art 2(c), these entities may feel pressured to collect and share information about how the exceptions are being used; Helfer et al (n 105) 77. 107 Art 8 of the Marrakesh Treaty provides: ‘In the implementation of the limitations and exceptions provided for in this treaty, Contracting Parties shall endeavour to protect the privacy of beneficiary persons on an equal basis with others.’ 108 Nicholas Caivano, ‘Inaccessible Inclusion: Privacy, Disclosure and Accommodation of Mental Illness in the Workplace’ (2016) 5 Can J Hum Rts 97, 109–10. 109 Anita Silvers and Michael Ashley Stein, ‘An Equality Paradigm for Preventing Genetic Discrimination’ (2002) 55 Vand L Rev 1341, 1366. 102 104
land, giannoumis, kitkowska, and mikhaylova
618
Respect for Privacy
entitled under international and domestic law. For example, the extent to which health information, once disclosed in order to obtain an accommodation, can and must remain private is not always clearly regulated under domestic law.110 In the United States, the Americans with Disabilities Act protects medical confidentiality, which limits the extent to which an employer can disclose an employee’s medical information.111 Privacy violations can have particularly significant impacts for individuals with disabilities; breaches of privacy that reveal information about a person’s disability can lead to discrimination in employment or housing.112 Thus, activities such as data mining might have much more significant consequences for individuals with disabilities. Data mining is the ‘intelligent search for new knowledge in existing masses of data’.113 The analysis of these ‘big data’ sets attempts to uncover relationships between complex behavioural patterns and trends. As a result, data mining provides an opportunity for service providers to infer private, non-public personal information about an individual based on the relationship between two other data points that are publicly available. Data mining is particularly harmful for individuals with disabilities to the extent it is used to infer information about a disability, which could then be used as a basis for discrimination or other rights violations.
3.10 Family Article 22 also protects individuals with disabilities from arbitrary or unlawful interference with their ‘family’. The preamble to the CRPD defines ‘family’ as ‘the natural and fundamental group unit of society’ and notes that it ‘is entitled to protection by society and the state, and that persons with disabilities and their family members should receive the necessary protection and assistance’.114 In General Comment No 16, the HRCtee notes that the term ‘family’ must ‘be given a broad interpretation to include all those comprising the family as understood in the society of the State party concerned’.115 The ECtHR has said that the term ‘family’ in article 8 is ‘not confined solely to marriage-based relationships and may encompass other de facto “family” ties where the parties are living together outside of marriage’.116 In a 2015 decision, it also extended the protection of article 8 to same-sex couples.117 The term ‘family’ in article 22 CRPD must also be interpreted in light of its drafting history and the decision to separate the right to privacy from the rights to home and family. Article 23 CRPD protects individuals with disabilities against discrimination ‘in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others’.118 These rights include the right to enter into marriage and found a family; to make decisions about the number and spacing of children; to retain their fertility; to appropriate assistance in the performance of child-rearing responsibilities; to equal rights of children with disabilities; and of children and their families not to be separated unless judicial authorities determine separation is necessary for the best interests of the child;
111 Caivano (n 108) 131–32. Tudor (n 94) 647–49. As discussed below, the measures that are created to protect individuals from infringements to their rights to privacy are also often not accessible or designed with individuals with disabilities in mind. See text accompanying (nn 172–76). 113 Joseph Fulda, ‘Data Mining and Privacy’ (2000) 11 Alb LJ Sci & Tech 105, 106. 114 115 CRPD preamble. General Comment No 16 (n 37) para 5. 116 Keegan v Ireland (1994) 18 EHRR 342 para 44. 117 Oliari v Italy (2017) 65 EHRR 26 para 165. 118 Art 23 CRPD. 110 112
land, giannoumis, kitkowska, and mikhaylova
Article 22
619
and to the provision of alternative care within the wider family or community if care within the immediate family is not possible.119 The protection afforded to ‘family’ under the ICCPR, however, which was the model for article 22 CRPD, is not exhausted by these specific enumerated rights. Individual autonomy includes not just individual rights to form a family but also ‘action with others’, and thereby ‘entails a claim to private communication with the respective others’.120 This might include, for example, the right to communicate with family.121 Article 17 ICCPR has also been found to protect the associational rights of family members, limiting for example the conditions under which a state may exclude an individual from a country in which his or her close family members reside.122 Thus, the term ‘family’ in article 22 continues to provide protection to individuals with disabilities with respect to their familial relationships, including communication within and association with their families.
3.11 Home ‘Home’ is given a particularly broad scope in article 22, which specifies that the right to privacy must be protected ‘regardless of [the individual’s] place of residence or living arrangements’. The HRCtee, interpreting article 17 ICCPR, has explained that the term ‘home’ must be ‘understood to indicate the place where a person resides or carries out his usual occupation’.123 Thus, ‘home’ under article 17 ICCPR also includes an individual’s place of work.124 The ECtHR has also adopted a more comprehensive interpretation of the concept of ‘home’. According to the ECtHR, ‘home’ is ‘not limited to those [places] which are lawfully occupied or which have been lawfully established’.125 Instead, ‘[w]hether or not a particular habitation constitutes a “home” which attracts the protection of article 8(1) will depend on the factual circumstances, namely, the existence of sufficient and continuous links with a specific place’.126 Under the ECtHR’s caselaw, a ‘home’ may include business premises, social housing, non-traditional residences such as caravans, and temporarily inhabited spaces.127
3.12 Correspondence and Communication Article 22 CRPD obligates states to protect the privacy of ‘correspondence or other types of communication’. In drafting the CRPD, the Ad Hoc Committee included the phrase ‘or other types of communication’ to make clear that the treaty protects not only traditional means of communication, but also communication made possible by current and future technological advances.128 Although article 17 ICCPR and article 8 ECHR only refer to ‘correspondence,’ they have both been read broadly. The ECtHR has applied article 8 to email and electronic data,129 as well as to metadata, or information about communication, such as the date 120 ibid. Georgieva (n 45) 115; see also Nowak (n 45) 288. Khadzhiev v Turkmenistan HRCtee Comm No 2079/2011 UN Doc CCPR/C/113/D/2079/2011 (12 May 2015) para 8.8. 122 123 Aumeeruddy (n 66) para 9.2. General Comment No 16 (n 37) para 5. 124 125 See also Nowak (n 45) 302–03. Prokopovich v Russia (2006) 43 EHRR 10 para 36. 126 127 ibid. Giacomelli v Italy (n 37) para 76. 128 ‘Report of the Ad Hoc Committee on its fifth session’ (n 1) para 92. 129 Copland v United Kingdom (2007) 45 EHRR 37 para 41. 119 121
land, giannoumis, kitkowska, and mikhaylova
620
Respect for Privacy
and length of a conversation.130 Moreover, the fact that the metadata collected and stored by the public authority was legitimately obtained did not prevent a finding a violation of article 8.131 In General Comment No 16, the HRCtee addressed the compatibility of ‘[s]urveillance, whether electronic or otherwise, telegraphic and other forms of communication, wire-tapping and recording of conversations’, thus indicating article 17’s applicability to modern forms of communication.132 Surveillance—including interception, and retention of communication data133—is an interference with the right to privacy. The HRCtee has emphasized the importance of respecting the ‘integrity and confidentiality of correspondence and has noted that surveillance, whether electronic or otherwise, . . . should be prohibited’.134 Despite the strength of this statement, it was drafted at a time before states used the sophisticated surveillance techniques that they employ today, and it does not seem to reflect current state practice.135 Nonetheless, such surveillance must be subject to stringent limitations. As the UN General Assembly emphasized, ‘unlawful or arbitrary surveillance and/or interception of communications, as well as unlawful or arbitrary collection of personal data,’ are ‘highly intrusive acts’ that ‘violate the rights to privacy and to freedom of expression and may contradict the tenets of a democratic society’.136 Former UN Special Rapporteur on freedom of expression and opinion Frank La Rue noted that such surveillance ‘must only occur under the most exceptional circumstances and exclusively under the supervision of an independent judicial authority’.137 The General Assembly also observed that ‘while concerns about public security may justify the gathering and protection of certain sensitive information, states must ensure full compliance with their obligations under international human rights law’.138 Thus, state surveillance of communications can be consistent with the right to privacy but must meet the tests of lawfulness, proportionality, and legitimate purpose. In his report addressing the impact of surveillance on article 17 ICCPR and by extension the right to freedom of expression, La Rue noted that states must ensure that the legal frameworks authorizing surveillance: ‘(a) Are prescribed by law, meeting a standard of clarity and precision that is sufficient to ensure that individuals have advance notice of and can foresee their application; (b) Are strictly and demonstrably necessary to achieve a legitimate aim; and (c) Adhere to the principle of proportionality, and are not employed when less invasive techniques are available or have not yet been exhausted’.139 Some have questioned whether bulk surveillance can ever meet these limitations.140 131 Copland (n 129), para 43. ibid. General Comment No 16 (n 37) para 8; see also Gregory Gisvold and Scott Carlson, Practical Guide to the International Covenant on Civil and Political Rights (Transnational Publishers 2003) 110 (fax and mail). 133 See eg S and Marper v United Kingdom (n 82) para 86; Amann v Switzerland (n 53) para 69; ‘Report of the Special Rapporteur on the promotion and protection of human rights and fundamental freedoms while countering terrorism, Martin Scheinin’ UN Doc A/HRC/10/3 (4 February 2009) paras 35, 48. 134 135 General Comment No 16 (n 37) para 8. Brunner (n 49). 136 ‘The Right to Privacy in a Digital Age’ UNGA Res 68/167 (21 January 2014) preamble. 137 La Rue (n 48) para 81. 138 UNGA Res (n 136) preamble. The General Assembly called on states ‘[t]o review their procedures, practices and legislation regarding the surveillance of communications, their interception and the collection of personal data, including mass surveillance, interception and collection, with a view to upholding the right to privacy by ensuring the full and effective implementation of all their obligations under international human rights law.’ ibid para 4(c). 139 ‘Report of the Special Rapporteur’ (n 48) para 83. 140 La Rue (n 48), para 62; see generally Brunner (n 49). 130 132
land, giannoumis, kitkowska, and mikhaylova
Article 22
621
The disproportionate impact of surveillance on individuals with disabilities must be considered in assessing the proportionality of the interference with article 22 CRPD. Individuals with disabilities rely particularly heavily on information and communication technologies.141 Because of this reliance on technology, they may be disproportionately affected by surveillance. Thus, surveillance measures which might otherwise be lawful and proportionate may be disproportionate when applied to individuals with disabilities. Communications surveillance also raises the question of geographic scope of the obligations under the CRPD. The scope of the obligations under article 17 ICCPR have been contested because article 2(1) of the Covenant defines the obligations of state parties as extending to ‘all individuals within its territory and subject to its jurisdiction’.142 The International Court of Justice (ICJ) has held that in light of the object and purpose of the ICCPR, this provision ‘is applicable in respect of acts done by a state in the exercise of its jurisdiction outside its own territory’.143 The ICJ found that this is consistent with the jurisprudence of the HRCtee and the travaux of the ICCPR.144 The HRCtee, in General Comment No 31, stated that a party to the ICCPR must respect the rights of anyone ‘within its power or effective control, even if not situated within its respective national borders and without concern for the circumstances in which such power or effective control was obtained’.145 The ECHR contains a much broader definition of the scope of its obligations. Article 1 ECHR requires states parties to ‘secure to everyone within their jurisdiction’ the rights protected in the treaty.146 The ECtHR has adopted an ‘effective control’ test in considering the scope of a state’s jurisdiction.147 Thus, the HRCtee’s emphasis on ‘effective control’ also appears largely consistent with the test of the ECtHR, although the jurisprudence of the ECtHR appears to have applied this test in different ways depending on context.148 Even under the test of effective control, however, it is unclear under what circumstances communications surveillance will trigger state obligations under article 17 ICCPR or article 8 ECHR.149 Nonetheless, it should be noted that the CRPD does not contain language limiting the scope of the CRPD to individuals within its jurisdiction, as is otherwise the case with the ICCPR and ECHR. Moreover, article 22 CRPD also applies ‘regardless of place of residence’, which might imply that its obligations extend to any individual affected by the state’s activity. The right to privacy among other rights in the CRPD may therefore have broader scope than either the ICCPR or ECHR. This may also be important in situations such as the cross-border exchange of accessible books in states that have ratified the Marrakesh Treaty; under both article 22 CRPD and article 8 Marrakesh Treaty, states may have an obligation to create protections to ensure the privacy of all beneficiaries seeking to participate in these exchanges, regardless of their location. 142 See text accompanying (nn 97–100). Art 2(1) ICCPR (emphasis added). Advisory Opinion, Legal Consequences of the Construction of a Wall in the Occupied Palestinian Territory (2004) ICJ Reports 141 para 109. See generally Georgieva (n 45) 108–10. 144 ibid. 145 HRCtee, ‘General Comment No 31’ UN Doc CCPR/C/21/Rev 1/Add 1326 (2004) para 10; see also Lopez Burgos v Uruguay HRCtee Comm No 52/1979 UN Doc CCPR/C/13/D/52/1979 (29 July 1981). 146 147 148 Art 1 ECHR. Georgieva (n 45) 111–13. ibid. 149 Peter Margulies, ‘The NSA in Global Perspective, Surveillance, Human Rights, and International Counterterrorism’ (2014) 82 Fordham L Rev 2137, 2151 (suggesting a ‘virtual control’ test instead of an ‘effective control’ test). 141 143
land, giannoumis, kitkowska, and mikhaylova
622
Respect for Privacy
3.13 Unlawful Attacks on Honour and Reputation of Persons with Disabilities Article 22 prohibits unlawful attacks on the honour and reputation of persons with disabilities. This text tracks the language of article 17 ICCPR. The HRCtee has not provided a definition for this phrase in article 17 ICCPR, instead leaving it to states to define this concept.150 General Comment No 16 also notes that the state is obligated to provide an effective remedy for unlawful attacks on the reputation and honor of a person.151 During the drafting of the ICCPR, delegates raised the question about whether article 17 should separately protect honour and reputation, contending that ‘reputation’ was the broader term and thus rendered ‘honour’ unnecessary.152 Others argued that these terms had different meanings and were both used in the text of the UDHR and in national legal systems.153 Ultimately, both terms were retained in article 17 and thus should be given separate meaning. In distinguishing these terms, Nowak argues that ‘honour’ relates to how an individual views him or herself, while ‘reputation’ is externally oriented and refers to how the indivdiual is viewed by others.154 The corresponding provision of the ECHR on the right to privacy does not explicitly formulate a right to protection of honour and reputation. However, the ECtHR in Pfeifer v Austria recognized that reputation represents a part of ‘individual identity and psychological integrity’ of a person, and therefore falls under the concept of private life.155 The ECHR also addresses issues of reputation under article 10(2) ECHR, which notes that protection of reputation is a legitimate ground for restricting freedom of expression.156 The protection of honour and reputation may have particular importance for the rights of persons with disabilities. Weber argues that this language ‘holds promise for efforts to diminish the stigma that frequently is imposed on persons with disabilities’.157 Noting that ‘State-sponsored segregation of people with disabilities and the history of eugenics and other attacks on those with disabilities make them uniquely subject to reputational harm,’ Weber argues that article 22 imposes a positive duty on states to remedy these kinds of attacks on reputation.158
3.14 Right to Protection of Law Against Interference Under article 22 CRPD, persons with disabilities ‘have the right to the protection of the law against . . . interference [with] or attacks [on]’ their privacy. This means that states are obligated to take positive measures to prevent unlawful or arbitrary interferences with the privacy of individuals with disabilities as well as attacks on their honour and reputation. Toward this goal, the CRPD Committee has called on states to create legal structures and protocols to protect the right to privacy of individuals with disabilities.159 151 General Comment No 16 (n 37) para 11. ibid. 153 154 Report of the Third Committee (n 62) para 38. ibid. Nowak (n 45) 306. 155 Pfeifer v Austria (2009) 48 EHRR 8 para 35; see also Della Fina (n 1) 409. 156 157 158 Art 10(2) ECHR. Weber (n 35) 14. ibid 14–15. 159 ‘Concluding Observations on Paraguay’ para 77 (expressing concern with the lack of progress in implementing article 22); ‘Concluding Observations on Latvia’ para 37 (calling for the state to ‘reinforce the protection of privacy, including personal data, including in psychiatric hospitals and institutions’); ‘Concluding Observations on Denmark’ para 51 (calling for an amendment to the Psychiatric Act to protect personal data of patients in hospitals); ‘Concluding Observations on Uganda’ (calling for ‘protocols’ in the ‘health and banking sectors’). 150 152
land, giannoumis, kitkowska, and mikhaylova
Article 22
623
Similar language in article 17 ICCPR has been interpreted to require states to take positive legal measures to safeguard the right to privacy. In General Comment No 16, the HRCtee noted that article 17 ‘require[s]the state to adopt legislative and other measures to give effect to the prohibition against such interferences and attacks as well as to the protection of this right’.160 The HRCtee places significant responsibility on the legislative branches of states parties to develop adequate laws and regulations, noting that ‘it is precisely in state legislation above all that provision must be made for the protection of the right set forth in that article’.161 National legal regimes may seek to protect individuals with disabilities from interferences with their privacy or attacks on their honor or reputation in a variety of ways. For example, states may provide suppression remedies for evidence collected in violation of law,162 or civil remedies under common or statutory law for arbitrary or unlawful interferences with privacy or attacks on honour or reputation. The CRPD Committee, for example, critiqued Latvia because of the ‘[r]eported ineffective means of recourse to contest third party access to personal data of persons with intellectual and/or psychosocial disabilities’.163 National jurisdictions can also protect privacy by requiring private authorities that use, store and process personal data to provide notice of their policies and obtain user consent.164 The CRPD Committee has emphasized the importance of ensuring notice and consent with respect to the use of personal data. In its concluding observations on Latvia, for example, the Committee critiqued the state for allowing third party access to an individual’s data ‘without the authorization of the individual concerned’.165 Interpreting article 17 ICCPR, the HRCtee has also emphasized notice and consent, contending that in order to realize a right to privacy, everyone has the ‘right to ascertain in an intelligible form, whether, and if so, what personal data is stored in automatic data files, and for what purposes’.166 Notice and consent as a means for mitigating privacy harms, however, has been the subject of extensive critiques.167 With respect to persons with disabilities, notice and consent raises several specific concerns. Among other things, notice and consent does not protect them from disclosure of otherwise personal information—for example, information about health status or disability—that is inferred from the correlation between existing and publicly available data.168 Further, it is not clear that current privacy practices, which are often presented on a ‘take it or leave it basis’,169 are sufficient to realize meaningful consent.
161 General Comment No 16 (n 37) para 1. ibid para 2. eg CalECPA provides a statutory suppression remedy for electronic data obtained by a government entity in violation of its terms or the US Constitution, Freiwald (n 49). 163 ‘Concluding Observations on Latvia’ para 37(b). 164 Joel R Reidenberg, Cameron Russell, Alexander J Callen, Sophia Qasir, and Thomas B Norton, ‘Privacy Harms and the Effectiveness of the Notice and Choice Framework’ (2015) 11 I/S: JL & Pol’y for Info Soc’y 485, 489–90; Robert H Sloan and Richard Warner, ‘Beyond Notice and Choice: Privacy, Norms, and Consent’ (2014) 14 J High Tech L 370, 373–74. 165 ‘Concluding Observations on Latvia’ para 37(b). 166 General Comment No 16 (n 37) para 10. 167 168 Reidenberg et al (n 164); Sloan and Warner (n 164). Weber (n 35) 15. 169 Helen Nissenbaum, ‘A Contextual Approach to Privacy Online’ (2011) 140 Daedalus 32, 35. 160 162
land, giannoumis, kitkowska, and mikhaylova
624
Respect for Privacy
Consent also cannot be freely given when it is required as a condition of participating in the information society.170 This is further complicated for individuals with disabilities who rely on electronic communication to participate in society on an equal basis with others. Consent is not meaningful if it is required for access to the technology that allows an individual with a disability to navigate physical space, communicate with others, or perform her job. This is further compounded by the vast number of privacy policies that an individual may encounter in a day; one would seemingly have to read, understand, and track the variations among privacy policies for interactions with hundreds or thousands of different ICT service providers.171 In the context of the right to privacy for persons with disabilities, privacy harms associated with unauthorized disclosure, surreptitious collection, and unlawful retention of personal information cannot be mitigated by a mechanism for notice and consent where the information being provided is not designed to be accessible for persons with disabilities. Persons with disabilities, in particular persons with cognitive disabilities, may experience barriers to accessing information about the privacy practices of ICT goods and services providers. Lazar et al notes that privacy policies online are often provided in a way that is inaccessible to persons with disabilities either due to small text size, complex wording, or incompatibility with the specialized software that persons with disabilities use to access the web such as screen readers.172 As a consequence, a person with a disability may be deterred from using the product or service or may choose to disclose personal information to someone else in order to use the technology.173 Either scenario has the potential to further exclude a person with a disability from society or expose them to privacy threats. States must ensure that private entities make their data privacy policies available in accessible forms. Accessibility is a fundamental principle of the CRPD and acknowledged as ‘a precondition for persons with disabilities to live independently and participate fully and equally in society’.174 Accessible privacy policies may be viewed as analogous to accessibility standards, which the CRPD Committee in General Comment No 2 noted ‘should be available in easy-to-read formats and augmentative and alternative modes and methods to persons with disabilities who use such formats, modes and methods’.175 However, the extent to which a notice can be written clearly and simply without hiding details around an organization’s privacy practices has yet to be taken up in the research literature or in policy. This is the paradox that arises around the level of detail included in the notice.176 Plain-language notices are essential for ensuring accessibility but may also hide important details around data collection, storage, and distribution.
Nissenbaum (n 169) 35–38. According to Lazar et al it would take seventy-six working days for an individual to read all of the privacy policies they encounter in an average year. Lazar et al (n 3) 209. 172 173 174 ibid. ibid. General Comment No 2 (n 101) para 1. 175 ibid para 21, eg accessible information could adhere to Section 508 of the Rehabilitation Act or to ISO/ IEC 40500:2012. States can also ensure that technological tools that individuals can use to secure their privacy online, such as virtual private networks, privacy enhanced web browsers, and other privacy technologies, are available to individuals with disabilities. 176 Nissenbaum (n 169) 36. 170 171
land, giannoumis, kitkowska, and mikhaylova
Article 22
625
4. Paragraph 2 4.1 Protection of Personal, Health, and Rehabilitation Information on an Equal Basis with Others Paragraph 2 of article 22 was added in order to highlight the importance of protecting the personal, health, and rehabilitation information of persons with disabilities. Disclosure of personal information could be used to discriminate against them on the basis of their disability, or it could be incorrect or misleading. There are also dignitary harms associated with privacy breaches. This includes loss of dignity inherent in the revelation of personal information without one’s consent, as well as harms to one’s ability to control their information or to control the portrayal of their identity in public. According to the HRCtee, the right to privacy under article 17 ICCPR requires states to regulate by law the ‘gathering and holding’ of personal information by public and private authorities and bodies alike.177 States must ensure that ‘information concerning a person’s private life does not reach the hands of persons who are not authorized by law to receive, process and use it, and is never used for purposes incompatible with the Covenant’.178 Further, if an individual’s files ‘contain incorrect personal data or have been collected or processed contrary to the provisions of the law, every individual should have the right to request rectification or elimination’.179 The CRPD Committee has emphasized the importance of protecting personal data, particularly information about an individual’s disability or health status, in several concluding observations.180 In its concluding observations on Denmark, for example, the Committee expressed concern about the transfer of ‘strictly private and confidential information’ by psychiatric hospitals to third parties without the consent of the person concerned, and urged the state party to prohibit such practices.181 In its concluding observations on Latvia, the Committee expressed concern about the lack of safeguards to protect the privacy of individuals who were listed on a ‘register of patients suffering from certain diseases’ in light of the impact this listing had on their employment and access to services.182 In its recommendations to Latvia, the Committee also expressed concern about the inability of individuals to contest third party access to data that hospitals had collected about them without their consent.183 The handling of genetic information is an emerging area in which the application of privacy principles do not necessarily provide a satisfactory solution to the harms associated with collection and disclosure of this information. Genetic information clearly falls within the category of ‘personal, health and rehabilitation’, and several have argued
178 General Comment No 16 (n 37) para 10. ibid. ibid. In the United States, the confidentiality of heath information is protected by a variety of laws, including the Privacy Act of 1974 5 USC § 552(a) (2000), the Health Insurance Portability and Accountability Act (HIPPA) 64 Federal Register 53,211 (14 August 2002), as well as provisions of the Americans with Disabilities Act (ADA), 42 USC § 12101–13. 180 Concluding Observations on Uganda para 45 (protecting personal data in ‘health and banking sectors’); Concluding Observations on Armenia para 38 (calling on state to protect the ‘personal, health, habilitation and rehabilitation status’ of children). 181 ‘Concluding Observations on Denmark’ paras 50–51. 182 183 ‘Concluding Observations on Latvia’ para 37 (a). ibid para 37(b). 177 179
land, giannoumis, kitkowska, and mikhaylova
626
Respect for Privacy
that genetic privacy is protected by the CRPD, including the right to refuse genetic testing.184 Privacy law, however, may be limited in the extent to which it can ensure the privacy of genetic information. Silvers and Stein argue, for example, that privacy- based protections address the harms of genetic information by limiting the extent to which it is shared, but this approach is not compatible with ‘the practical realities of how genetic information is disseminated’.185 Further, once privacy is waived, there is no protection against the use of information for another purpose, and the law also does not adequately address situations in which more than one person has rights in the same information.186
4.2 EU General Data Protection Regulation Data protection law is an instantiation of the right to privacy that has over time emerged as a fundamental right in and of itself.187 A full examination of data protection law is beyond the scope of this commentary; nonetheless, the basic principles underlying the EU General Data Protection Regulation (GDPR) provide helpful insights into the kinds of safeguards that can help minimize interferences with privacy with respect to the handling of personal, health, and rehabilitation information. The GDPR defines ‘personal data’ as ‘any information relating to an identified or identifiable natural person’.188 The GDPR regulates the ‘processing’ of such personal data.189 Broadly, there are six principles under the GDPR that govern the processing of data: • Lawfulness, fairness and transparency: Data must be ‘processed lawfully, fairly and in a transparent manner in relation to the data subject’.190 • Purpose limitation: Data must be ‘collected for specified, explicit and legitimate purposes and not further processed in a manner that is incompatible with those purposes’.191 • Data minimisation: Data must be ‘adequate, relevant and limited to what is necessary in relation to the purposes for which they are processed’.192 184 Weber (n 35) 15, 19. Genetic privacy can also be protected in national law, eg the US Privacy Act of 1974, 5 USC § 552(a) (2000), and the 1996 New Jersey Genetic Privacy Act, NJ Rev Stat § 178:30-12 (1996), address employment discrimination based on genetic information. National privacy laws can also prevent employers from refusing employment to an individual who is unwilling to undergo genetic testing; Colo Rev Stat Ann § 10-3-ll04.7(1)(a) (West 2001); Fla Stat Ann § 760.40(2)(a) (West 1997 & Supp 2002); Ga Code Ann § 33-54-1(1) (Harrison 1996). In addition, the US Health Insurance Portability and Accountability Act (HIPAA) prevents the use of genetic information to establish a pre-existing condition without a diagnosis; 64 Federal Register 53,211 August 14, 2002 sec 164.506a; see generally Mary R Anderlik and Mark A Rothstein, ‘Privacy and Confidentiality of Genetic Information: What Rules for the New Science?’ (2001) 2 Annual Review of Genomics and Human Genetics 401. 185 186 187 Silvers and Stein (n 109) 377. ibid 378. Brunner (n 49). 188 Regulation 2016/679 (n 72) Art 4(1). 189 Processing is defined as ‘any operation or set of operations which is performed on personal data or on sets of personal data, whether or not by automated means, such as collection, recording, organisation, structuring, storage, adaptation or alteration, retrieval, consultation, use, disclosure by transmission, dissemination or otherwise making available, alignment or combination, restriction, erasure or destruction,’ ibid Art 4(2). 190 191 ibid Art 5(1)(a). ibid Art 5(1)(b). 192 ibid Art 5(1)(c). ‘Data minimization’ is essential to the protection of privacy, since it requires data processors to collect only the information that is needed. The collection of unnecessary data, which separately may not be harmful, might lead to severe risks and harms such as financial loss, identity theft, blackmail, or psychological injuries.
land, giannoumis, kitkowska, and mikhaylova
Article 22
627
• Accuracy: Data must be ‘accurate and, where necessary, kept up to date’, and ‘every reasonable step must be taken to ensure that personal data that are inaccurate, having regard to the purposes for which they are processed, are erased or rectified without delay’.193 • Storage limitation: Data must be ‘kept in a form which permits identification of data subjects for no longer than is necessary for the purposes for which the personal data are processed’.194 • Integrity and confidentiality: Data must be ‘processed in a manner that ensures appropriate security of the personal data, including protection against unauthorised or unlawful processing and against accidental loss, destruction or damage’.195 Finally, the GDPR also establishes a principle of accountability, by which data controllers ‘shall be responsible for, and be able to demonstrate compliance with’ these principles.196
ibid Art 5(1)(d). ibid Art 5(1)(f ).
ibid Art 5(1)(e). ibid Art 5(2).
193
194
195
196
land, giannoumis, kitkowska, and mikhaylova
Article 23 Respect for Home and the Family . States Parties shall take effective and ap1 propriate measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others, so as to ensure that: a. The right of all persons with disabilities who are of marriageable age to marry and to found a family on the basis of free and full consent of the intending spouses is recognized; b. The rights of persons with disabilities to decide freely and responsibly on the number and spacing of their children and to have access to age- appropriate information, reproductive and family planning education are recognized, and the means necessary to enable them to exercise these rights are provided; c. Persons with disabilities, including chil dren, retain their fertility on an equal basis with others. . States Parties shall ensure the rights and re2 sponsibilities of persons with disabilities, with regard to guardianship, wardship, trusteeship, adoption of children or similar institutions, where these concepts exist in national legislation; in all cases the best interests of the child shall be paramount. States Parties shall render
appropriate assistance to persons with disabilities in the performance of their child-rearing responsibilities. . States Parties shall ensure that children 3 with disabilities have equal rights with respect to family life. With a view to realizing these rights, and to prevent concealment, abandonment, neglect and segregation of children with disabilities, States Parties shall undertake to provide early and comprehensive information, services and support to children with disabilities and their families. . States Parties shall ensure that a child 4 shall not be separated from his or her parents against their will, except when competent authorities subject to judicial review determine, in accordance with applicable law and procedures, that such separation is necessary for the best interests of the child. In no case shall a child be separated from parents on the basis of a disability of either the child or one or both of the parents. . States Parties shall, where the immediate 5 family is unable to care for a child with disabilities, undertake every effort to provide alternative care within the wider family, and failing that, within the community in a family setting.
1. Introduction 2. Background and Travaux Préparatoires 3. Paragraph 1 3.1 Effective and Appropriate Measures to Eliminate Discrimination 3.2 All Matters Relating to Marriage, Family, Parenthood, and Relationships 3.3 On an Equal Basis with Others 4. Paragraph 1(a) 5. Paragraph 1(b) 6. Paragraph 1(c) 7. Paragraph 2
fiala-butora
629 630 635 635 637 639 640 642 644 645
Article 23
629 649 651 654
8. Paragraph 3 9. Paragraph 4 10. Paragraph 5
1. Introduction The right to family life and its various components have long been recognized by international human rights law. Article 16 of the Universal Declaration on Human Rights (UDHR) acknowledges the family as the natural and fundamental group unit of society entitled to protection. Article 25(2) UDHR extended social protection to families and specifically to children. The same approach was adopted by the International Covenant on Civil and Political Rights (ICCPR) in articles 23 (family) and 24 (children), and article 10 of the International Covenant on Economic, Social and Cultural Rights (ICESCR). The Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW) specified some aspects of the right to family life for women in article 16 on marriage. So did the Convention on the Rights of the Child (CRC) with regard to children, in articles 20 and 21 concerning separation from the family, alternative care, and adoption. The right to family life is also recognized in regional human rights instruments. The European Convention on Human Rights (ECHR) separately protects the right to marry in article 12, and the right to respect for private and family life in article 8. The American Convention on Human Rights protects the rights of the family in its article 17, including the right to marry, and the rights of the child in article 19. The African Charter on Human and Peoples’ Rights provides for the protection of the family and other vulnerable groups in article 18. Despite this long tradition of protecting the family in human rights law, persons with disabilities have long been subject to serious violations of their right to family life. The prevailing stereotype has considered persons with disabilities asexual, which has led to the denial of their sexual autonomy.1 Coupled with the fact that sex is a taboo subject in many cultures, access to sexual life and partnership has been full of obstacles for many persons with disabilities, especially those living in institutions. Reports have uncovered violations of their right to marry, to have children, forced abortions and sterilizations, forcible separation of children from families, and various grave forms of sexual abuses.2 One of the urgent tasks of the CRPD Committee is to put an end to these grave violations under article 23 CRPD. The right to family life, however, is much wider than the egregious violations mentioned above. It encompasses all forms of relationships and parenthood. To be truly equal members of society, persons with disabilities must achieve equality of opportunity in these areas as well. This requires significant attitudinal change, empowerment, dismantling of barriers, and support to experience intimate relationships.3 1 Robyn M Powell, Michael Ashley Stein, ‘Persons with Disabilities and their Sexual, Reproductive, and Parenting Rights: An International and Comparative Analysis’ (2016) 11 Frontiers L China 55. 2 János Fiala-Butora, ‘Disabling Torture: The Obligation to Investigate Ill-treatment of Persons with Disabilities’ (2013) 45 Colum Human Rights L Rev 233. 3 Tom Shakespeare, ‘Disability and Social Rights: Family and Intimate Relations’, in Malcolm Langford, Michael Ashley Stein (eds), Disability Social Rights (forthcoming 2017).
fiala-butora
630
Respect for Home and the Family
To be sure, as explained by Tom Shakespeare, the asexual image of persons with disabilities is a myth: where they are allowed the opportunity, persons with disabilities—much like persons without disabilities—are having sex and engaging in relationships.4 Some states already provide them significant support in exercising their parental rights.5 But the reality in many countries is still very bleak. As the detailed study of Martha Field and Valerie Sanchez uncovered, persons with intellectual disability face significant legal barriers in becoming parents even in developed countries like the USA.6 Elizabeth Emens has described the obstacles they face in enjoying intimate relationships and the state’s role in attending to the ‘architecture of intimacy’, to encourage intimate affiliations.7 Thus, achieving equality in these areas will be a long process. The following chapter will explore how the above concepts shaped the text of article 23 during the CRPD negotiations. Further, it will analyse the text of article 23 and the CRPD Committee’s interpretative work through its concluding observations. It will highlight the issues not yet clearly covered by article 23, with a view to consider how interpretative practice might develop in the future.
2. Background and Travaux Préparatoires The right to family life or the right to marry did not appear in the first working draft of the CRPD’s text presented by Mexico during the first session of the UN Ad Hoc Committee which drafted the Convention.8 Reproductive rights were only mentioned in the context of access to healthcare, in article 13.9 Nor did the right to family life come up in the position papers submitted by the EU10 and China.11 The right to family life was also not mentioned in the summary of the study on the human rights of persons with disabilities prepared by the OHCHR and presented to the Ad Hoc Committee, evaluating existing standards and mechanisms in the field of human rights and disability.12 It was, however, covered in the report itself, with references to its various components as covered by other UN instruments,
ibid. See the example of Sweden, in Stanley S Herr, ‘Self Determination, Autonomy, and Alternatives for Guardianship’ in Stanley S Herr, Lawrence O Gostin, Harold Hongju Koh (eds), The Human Rights of Persons with Intellectual Disabilities (OUP 1999) 436. 6 Martha A Field, Valerie A Sanchez, Equal Treatment for People with Mental Retardation (Harvard University Press 1999). 7 Elizabeth F Emens, ‘Intimate Discrimination: The State’s Role in the Accidents of Sex and Love’ (2009) 122 Harvard Law Review 1307. 8 Ad Hoc Committee, Comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities—‘Working paper by Mexico’ UN Doc A/AC265/WP 1 (29 July–9 August 2002), available at: . 9 ibid. 10 Ad Hoc Committee, Comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities—‘Position paper by the European Union’ UN Doc A/AC265/WP 2 (29 July–9 August 2002), available at: . 11 Ad Hoc Committee, Comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities—‘Position paper by the People’s Republic of China’ UN Doc A/AC265/WP 3 (29 July–9 August 2002), available at: . 12 UN Economic and Social Council, Commission on Human Rights, Human Rights of Persons with Disabilities UN Doc E/CN4/2002/18/Add 1 (12 February 2002), 4 5
fiala-butora
Article 23
631
such as reproductive rights,13 the right to marry,14 and children’s right to a family.15 Family life also did not come up specifically during the Ad Hoc Committee’s negotiations.16 The first specific proposal to include ‘aspects of sexuality’ in the new convention appeared in the Ad Hoc Committee’s second session.17 The African Union called attention to the fact that certain persons, especially women, might be forbidden from marrying or having children merely on the basis of their disability.18 The Danish Institute for Human Rights’ submission also highlighted family life and intimate and sexual relationships in the context of the principle of participation.19 In June 2003, an expert group meeting held in Bangkok by the Economic and Social Commission for Asia and the Pacific specifically proposed to further elaborate on the right to family life and the right to sexuality.20 The Venezuelan government went even further, specifically calling for the abolition of laws discriminating in respect of marriage, procreation, and inheritance, and campaigned to change the negative attitudes towards sexuality, marriage, and parenthood of persons with disabilities.21 A different approach was taken by the Arab Regional Conference in Beirut, which recommended strengthening the role of the family in providing care for children with disabilities, and especially of women as primary caregivers.22 This included moral and material support to families and also obligatory medical checks before marriage, to limit ‘abnormalities’.23 Between the second and third meeting of the Ad Hoc Committee, a working group developed a draft text of the convention. Their proposal included a stand-alone article, numbered as article 14, concerning respect for privacy, the home, and the family.24 Article 14 overlapped to a great extent with what is now the final version of paragraphs 1, 2, and 4 of article 23 CRPD. By expanding on the Chair’s draft text,25 draft article 14 also 13 Gerard Quinn, Theresia Degener (eds), The Current Use and Future Potential of United Nations Human Rights Instruments in the Context of Disability (United Nations 2003) 70, 172. 14 15 ibid 57. ibid 195. 16 UNGA, Comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities, UN Doc A/57/357 (27 August 2002). 17 Ad Hoc Committee, ‘Views submitted by Governments, intergovernmental organizations and United Nations bodies concerning a comprehensive and integral international convention on the protection and promotion of the rights and dignity of persons with disabilities’ UN Doc A/AC265/2003/4+A/AC265/2003/4/ Corr 1 (16–27 June 2003). 18 ibid. 19 Ad Hoc Committee, ‘Letter dated 26 May 2003 from the Executive Director of the Danish Institute for Human Rights addressed to the Secretary of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2003/CRP/9 (16–27 June 2003). 20 Ad Hoc Committee, ‘Bangkok recommendations on the elaboration of a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities’ UN Doc A/AC265/2003/CRP/10 (16–27 June 2003) para 29. 21 Ad Hoc Committee, ‘Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities. Draft submitted by the Government of the Bolivarian Republic of Venezuela’ A/AC265/2003/WP 1 (16–27 June 2003) para 16. 22 Ad Hoc Committee, ‘Beirut Declaration and Recommendations on the elaboration of a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities’ UN Doc A/AC265/2003/CRP/12 (16–27 June 2003) para 4. 23 ibid para 4 a) vii. 24 Ad Hoc Committee, ‘Report of the Working Group to the Ad Hoc Committee, Annex I: Draft articles for a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2004/WG/1 (5–16 January 2004). 25 Ad Hoc Committee, ‘Chair’s Draft Elements of a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (December 2003) para 16.
fiala-butora
632
Respect for Home and the Family
included specific reference to the right of persons with disabilities to experience their sexuality, have sexual and other intimate relationships, encompassing further an obligation to promote awareness to change negative perceptions and social prejudices towards sexuality.26 The working group’s proposal was presented to the third session of the Ad Hoc Committee and was discussed on 27 May 2004. On the suggestion of Argentina, draft article 14 was divided into two separate articles, one dealing with privacy and the other with marriage and family relations.27 One of the most controversial issues was first raised by Yemen, which proposed that family and sexual relations be limited ‘in accordance with the precepts of religion, convictions and various customs’.28 The Holy See recommended that the paragraphs on sexual relations, marriage, and reproductive planning be consolidated into one paragraph, guaranteeing only the right to marry, as the other concepts were not found in other international conventions.29 As New Zealand pointed out, this was not a merger of the three paragraphs, but essentially a denial of the right to sexual relations and reproductive planning. Nevertheless, several states, including India, the Philippines, Kenya, and Iran supported the Holy See’s proposal, as did several NGOs, such as the Society of Catholic Social Scientists and the Pro Life Family Coalition.30 Syria, Libya, and Saudi Arabia suggested retaining the reference to sexual relations, but only with the addition ‘through legitimate marriage’.31 Several others states and four NGOs32 strongly opposed the Holy See’s proposal. These included Ireland, speaking on behalf of the EU, Norway, Australia, New Zealand, Brazil, Serbia and Montenegro, Thailand and others. Canada insisted that the right to experience sexuality and reproductive planning are vital components of the Convention. South Africa and Costa Rica considered that limiting relationships to marriage is too restrictive, as there are other forms of intimate relationships that persons with disabilities should have access to.33 The issue of sexual relationships outside of marriage turned out to be very divisive. A number of other amendments were proposed by the Ad Hoc Committee. Yemen, supported by the Arab Group, pointed out that Islamic law does not recognize adoptions, only guardianship over children (kafala), therefore it suggested that guardianship should be added to the text.34 Russia and Israel suggested to limit adoptions in accordance with national legislation.35 Kenya raised the issue of involuntary sterilizations and suggested their prohibition. New Zealand proposed positive language on persons with disabilities retaining their fertility, supported by Mexico, Thailand, and Serbia and Montenegro.36 The Holy See suggested that paragraph f ) on raising public awareness be moved to article 5 of the draft convention, which covered promotion of positive attitudes to persons 26 Ad Hoc Committee, ‘Report of the Working Group to the Ad Hoc Committee, Annex I: Draft articles for a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2004/WG/1 (5–16 January 2004). 27 Ad Hoc Committee, Daily summary of discussions related to Article 14—Respect for privacy, the home and the family Vol 4 #4 (27 May 2004), available at: . 28 29 30 31 ibid. ibid. ibid. ibid. 32 Canadian Association for Community Living, People with Disabilities Australia Incorporated, Australian National Association of Community Legal Centres, Australian Federation of Disability Organizations. 33 Daily summary of discussions related to Article 14—Respect for privacy, the home and the family Vol 4 #4 (n 27). 34 35 36 ibid. ibid. ibid.
fiala-butora
Article 23
633
with disabilities.37 This provision was ultimately moved to draft article 5, although that was not specific to sexuality and family life. The right to information on reproductive rights and family planning was, however, retained in draft article 14. The participating countries could not agree on the best wording concerning the possibility of separating children from their families. The initial draft prohibited separation on the basis of disability either directly or indirectly. Australia suggested deleting ‘directly and indirectly’, while Serbia and Montenegro suggested adding ‘solely’.38 The NGO People with Disabilities Australia (PWDA) strongly opposed the latter proposal, emphasizing that disability should never be a justification for the separation of children from their parents. PWDA considered this to be a potential loophole that would permit authorities to separate children from their parents.39 The Ad Hoc Committee could not find agreement on some of these conflicting proposals. Therefore, they were recorded with alternative wordings in the final report.40 The parties postponed the decisions for the fourth session of the Ad Hoc Committee, to give states more time to clarify their positions and find support for their proposals.41 But the fourth session did not result in a compromise either. States reiterated their strong position in support of specific reference to sexual life (Canada, New Zealand, Mexico, Thailand), or in opposition to it (Yemen, Qatar). New states joined the opposition, such as the United States, Botswana, and Malaysia.42 China noted that the issue was very controversial, particularly for Islamic countries.43 Japan proposed a compromise, which it felt was less controversial, suggesting that: ‘sexuality of PWD should be respected on an equal basis with other persons’, but this was not met with much support.44 The question was thus postponed again for further sessions of the Ad Hoc Committee. Concerning other issues, Costa Rica raised the question of access to abortions to be excluded from the Convention. A number of states stressed the importance of positive measures and assistance. Most states suggested the earlier proposal of the Holy See to move the provision on raising public awareness to draft article 5.45 Delegates made some progress at the fifth session of the Ad Hoc Committee. They decided to separate the provisions on private life from family life, the latter thus being transformed into a separate article. Its subparagraphs were renumbered to a form that was largely retained in the final text of the CRPD. The EU suggested deleting the reference to institutions as a place of residence and using, instead, the phrase ‘regardless of their place of residence’, which was supported by other states.46 New Zealand continued to insist on adding the right of persons with disabilities to retain their fertility.47 New Zealand and Canada also clarified that the reference to sexual life did not add a new right to the
38 39 ibid. ibid. ibid. Ad Hoc Committee, ‘Report of the third session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2004/5 (9 June 2004). 41 General Assembly, ‘Report of the third session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC265/2004/5 (9 June 2004). 42 Ad Hoc Committee, Daily summary of discussion at the fourth session, Vol 5 #5 (27 August 2004), available at: . 43 44 45 ibid. ibid. ibid. 46 Ad Hoc Committee, Daily summary of discussion at the fifth session, Vol 6 #7 (1 February 2005), available at: . 47 ibid. 37 40
fiala-butora
634
Respect for Home and the Family
convention, but merely underlined the right to equality in this area.48 Other countries, mostly Muslim and African states, continued to oppose a specific reference to sexual life outside of marriage as being insensitive to their cultural and legal systems, in order to prevent ‘encouraging rampant sex’.49 Yemen objected that the reference insinuates ‘that there can be sex outside of marriage’,50 which the EU confirmed. The Coordinator had to conclude that no agreement was reached on this controversial point. Other issues caused less controversy. Kenya noted that the welfare principle (child’s best interests) had been used in the past to remove children from persons with disabilities. Russia suggested that ‘ability to function’ could be a consideration in separation matters.51 Australia and Costa Rica clarified that disability should not be a consideration in the authorities’ decision to separate a child from its family.52 Other states endorsed this position, but the text of what ultimately became paragraph 4 was not reworded. To alleviate the concern of Muslim states, which did not recognize adoption in their legislation, the term ‘where these concepts exist in national legislation’ was added to the right of adoption. The article on the right to family life was not discussed during the sixth session of the Ad Hoc Committee.53 The Chairman, nevertheless, identified issues relating to the family as one of the most contentious outstanding issues of the Convention.54 The issue of sexual and reproductive health came up during the discussion on the right to health, causing controversy because some states opposed recognizing the right to abortion.55 The seventh session of the Ad Hoc Committee made great progress in finalizing the text of the right to family life, which found its final place as article 23 of the CRPD. Delegates added two paragraphs to the article. Reflecting on an earlier proposal by the International Disability Caucus (IDC), New Zealand proposed a provision on finding alternative community-based care for orphaned, abandoned, and rejected children with disabilities. This was approved and became paragraph 5 in the final text.56 Israel, also based on an earlier IDC proposal, suggested adding another paragraph dealing specifically with support to families to prevent abandonment.57 The wording was modified by suggestions of other delegations and was inserted in the article as paragraph 3. No compromise was found regarding paragraph 1. The consolidated text prepared by the Ad Hoc Committee retained a sub-paragraph (a) explicitly referring, in alternative versions, the experiencing of sexuality or having sexual and other intimate relationships.58
48 Ad Hoc Committee, Daily summary of discussion at the fifth session, Vol 6 #8 (2 February 2005), available at: . 49 50 51 52 ibid. ibid. ibid. ibid. 53 Ad Hoc Committee, ‘Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its sixth session’ UN Doc A/60/266 (17 August 2005). 54 Ad Hoc Committee, Press conference by chairman of Ad Hoc Committee on Disabilities Convention (12 August 2005), available at: . 55 Ad Hoc Committee, Daily summary of discussion at the sixth session Vol 7 #6 (8 August 2005), available at: (accessed 1 May 2017); see eg the position of Qatar. 56 Ad Hoc Committee, Daily summary of discussion at the seventh session Vol 8 #6 (23 January 2006), available at: . 57 ibid. 58 General Assembly, ‘Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its seventh session’ UN Doc A/AC265/2006/2 (13 February 2006).
fiala-butora
Article 23
635
This solution was both supported and opposed by many states.59 The issue was left open for the next session. The question of sexuality was only resolved at the final, eighth session of the Ad Hoc Committee. Because of the strong opposition to it from a large number of states, the explicit reference in sub-paragraph (a) to sexual life and sexuality was deleted and the word ‘relationships’ was instead added to the text of paragraph 1.60 Draft sub-paragraph (c) that ultimately became paragraph (b), was divided to create a separate sub-paragraph (c) with a view to stressing the right of persons with disabilities to retain their fertility. The rest of the text was left intact, except for some minor linguistic changes. The final text of article 23 was thus a result of an uneasy compromise. The text in many places was borrowed from the ICCPR and the CRC. Some states wished to copy the text of earlier conventions verbatim, in order to avoid creating new, controversial rights in the CRPD, such as abortion, homosexual marriage, and sex outside of marriage.61 Others emphasized that the inclusion of new concepts in article 23 was necessary to secure the equality of persons with disabilities in areas where others did not require protection. The debate can be understood not only as a struggle between culturally progressive and conservative positions, but also as a disagreement over the state’s role in creating equality of opportunity in areas where non-disabled persons do not require state involvement. This was well explained by Argentina during the seventh session of the Ad Hoc Committee, noting that the real issue is ‘how equality of opportunity would relate to private life and relationships, and what the scope would be in this context’.62 Many delegations supported a position of non-interference by states in such a culturally controversial area as sexual life. While this might be a reasonable approach in the case of other groups, as reflected in the text of earlier conventions, the CRPD was adopted exactly to overcome the limitations of earlier international treaties as they applied to persons with disabilities, and to create equality of opportunity in all areas of life. It is, therefore, fortunate that the final text goes beyond the wording of the ICCPR and CRC, including state support and concepts such as the retention of fertility and access to relationships. While the language is not as strong as some delegations hoped for, the resulting article 23 has the potential to cover all areas identified during the negotiations as important for persons with disabilities. The interpretative work of the CRPD Committee will be crucial in resolving the ongoing debate about how much state involvement is acceptable and required in the sensitive area of family life.
3. Paragraph 1 3.1 Effective and Appropriate Measures to Eliminate Discrimination Similar to other articles of the CRPD, article 23 does not list the specific steps states parties have to take to comply with their obligations under article 23. The CRPD Committee
59 Ad Hoc Committee, Daily summary of discussion at the seventh session Vol 8, #7 (24 January 2006), available at: . 60 General Assembly, ‘Final report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/61/611 (6 December 2006). 61 Ad Hoc Committee, Daily summary of discussion at the seventh session Vol 8 #6 (23 January 2006), available at: . 62 ibid.
fiala-butora
636
Respect for Home and the Family
does not make specific recommendations about how to achieve specific goals; it only declares which practices it considers discriminatory and expects parties to take appropriate measures. The choice of means is left to the respondent government. In some situations, the Committee refers to specific obstacles that have to be overcome, which necessarily narrows the choice of measures. The list of measures is open ended. So far, measures recommended by the Committee included legislative steps,63 provision of support,64 measures of protection,65 economic policy adjustments,66 and financial support,67 information,68 and education,69 measures promoting beneficial social practices,70 and other general measures. The requirement in article 23(1) to eliminate discrimination against persons with disabilities in the area of family life is stressed by emphasizing that measures countering discrimination must be ‘effective’. The CRPD Committee has invoked the criterion of effectiveness on several occasions. Those examples indicate that its purpose in the context of article 23 is to stress that measures formally combating discrimination, but not achieving equality in practice, will not satisfy the requirements of article 23. To be effective, a measure must not only eliminate formal legal obstacles, but ensure the effective enjoyment of the rights encompassed under article 23.71 For example, when faced with the Serbian72 and the (similar) Costa Rican73 practice of separating women with disabilities from their children, the Committee did not only require the repeal of the domestic regulations. In order to render the right to found a family effective, the state party was also expected to provide the necessary support to the affected women.74 In the absence of support, women would no longer be declared unfit
63 CRPD Committee, Concluding Observations on Kenya UN Doc CRPD/C/KEN/CO/1 (30 September 2015) para 41; CRPD Committee, Concluding Observations on Germany UN Doc CRPD/C/DEU/CO/1 (13 May 2015) para 44; CRPD Committee, Concluding Observations: Portugal UN Doc CRPD/C/PRT/ CO/1 (20 May 2016) para 42. 64 CRPD Committee, Concluding Observations: Ukraine UN Doc CRPD/C/UKR/CO/1 (2 October 2015) para 46; CRPD Committee, Concluding Observations: Chile UN Doc CRPD/C/CHL/CO/1 (13 April 2016) para 48. 65 CRPD Committee, Concluding Observations: Azerbaijan UN Doc CRPD/C/AZE/CO/1 (12 May 2014) para 39; CRPD Committee, Concluding Observations: Hungary UN Doc CRPD/C/HUN/CO/1 (22 October 2012) para 38. 66 CRPD Committee, Concluding Observations: Portugal UN Doc CRPD/ C/ PRT/ CO/ 1 (20 May 2016) para 43; CRPD Committee, Concluding Observations: European Union UN Doc CRPD/C/EU/CO/ 1 (2 October 2015) para 57. 67 CRPD Committee, Concluding Observations: Italy UN Doc CRPD/C/ITA/CO/1 (6 October 2016) para 51. 68 CRPD Committee, Concluding Observations: Uganda UN Doc CRPD/C/UGA/CO/1 (12 May 2016) para 47. 69 CRPD Committee, Concluding Observations: Belgium UN Doc CRPD/C/BEL/CO/1 (28 October 2014) para 35. 70 CRPD Committee, Concluding Observations: Guatemala UN Doc CRPD/C/GTM/CO/1 (30 September 2016) para 58. 71 CRPD Committee, Concluding Observations: Hungary UN Doc CRPD/C/HUN/CO/1 (22 October 2012) para 36. 72 CRPD Committee, Concluding Observations: Serbia UN Doc CRPD/C/SRB/CO/1 (23 May 2016) para 45. 73 CRPD Committee, Concluding Observations: Costa Rica UN Doc CRPD/C/CRI/CO/1 (12 May 2014) para 43. 74 CRPD Committee, Concluding Observations: Costa Rica UN Doc CRPD/C/CRI/CO/1 (12 May 2014) para 44.
fiala-butora
Article 23
637
mothers, but their right to found a family could not be fulfilled if they continued to be treated differently due to their unmet need for assistance. Besides being effective, measures combating discrimination must also be appropriate. The requirement of appropriateness is used in two related but distinct meanings by the CRPD Committee. First, ‘appropriate’ can be a synonym for ‘effective’: by requiring states parties to take appropriate measures, the Committee indicates that only measures capable of remedying the violation in question will be accepted under article 23. A slight difference in meaning can be observed by reviewing the discriminatory practices in question. The Committee stresses ‘effective’ measures to differentiate them from purely formal legislative measures;75 it uses ‘appropriate’ when the choice of measures is left to the state, provided that they fulfil the entitlement in question. In this sense, the concept of ‘effective’ differentiates the required measures from other, ineffective ones. For example, the CRPD Committee called upon Hungary to take appropriate measures to enable men and women with disabilities to marry and found a family.76 In this case, the obstacle was not based on a legal ban on marriage. If it had been, it would have been appropriate for the Committee to choose the adjective ‘effective’ to stress that repealing the legal ban was not enough in itself to comply with article 23. Similarly, Mongolia77 and Guatemala78 were urged to render appropriate assistance to allow persons with disabilities perform their child-rearing responsibilities. The Committee also required ‘appropriate’ measures in connection with economic policies of the EU 79 and Portugal,80 in order to endorse financial support for families of children with disabilities. The second meaning of ‘appropriate’ refers to the specific demographic conditions and accessibility criteria that measures have to take into account. Measures ensuring information and education on reproduction and family planning should be appropriate to the age of the children in question.81 Such information should also be provided in appropriate formats for persons with disabilities so that they can access it effectively.82
3.2 All Matters Relating to Marriage, Family, Parenthood, and Relationships Article 23(1) does not define the relationships it protects. It does not specify what forms and aspects of marriage and family must be made available to persons with disabilities. In the absence of definitions, the only requirement under article 23 is to ensure that persons
75 CRPD Committee, Concluding Observations: Serbia UN Doc CRPD/ C/ SRB/ CO/ 1 (23 May 2016) para 45. 76 CRPD Committee, Concluding Observations: Hungary UN Doc CRPD/C/HUN/CO/1 (22 October 2012) para 38. 77 CRPD Committee, Concluding Observations: Mongolia UN Doc CRPD/C/MNG/CO/1 (13 May 2015) para 35. 78 CRPD Committee, Concluding Observations: Guatemala UN Doc CRPD/ C/ GTM/ CO/ 1 (30 September 2016) para 58. 79 CRPD Committee, Concluding Observations: European Union UN Doc CRPD/ C/ EU/ CO/ 1 (2 October 2015) para 57. 80 CRPD Committee, Concluding Observations: Portugal UN Doc CRPD/ C/ PRT/ CO/ 1 (20 May 2016) para 43. 81 CRPD Committee, Concluding Observations: Belgium UN Doc CRPD/C/BEL/CO/1 (28 October 2014) para 35. 82 CRPD Committee, Concluding Observations: Uganda UN Doc CRPD/ C/ UGA/ CO/ 1 (12 May 2016) para 47.
fiala-butora
638
Respect for Home and the Family
with disabilities have equal rights to access relationships that are available to persons without disabilities. Article 23 uses the term marriage in the same meaning as domestic legislation. If a state party defines marriage as a union of one man and one woman, the CRPD will require marriage in this form to be accessible to persons with disabilities. If the domestic legislation recognizes same sex marriages, article 23 covers same sex marriages for persons with disabilities in respect of the country under consideration. This issue has not yet come up in the CRPD Committee’s concluding observations, as states that recognize same sex marriages have not restricted the right of persons with disabilities to marry.83 If marriage laws differentiate between different religious communities, article 23 applies to those as well—a religious exception has not been recognized by the CRPD Committee.84 Marriage laws based on religious doctrine have to be brought in line with the CRPD to prevent the discrimination of persons with disabilities. While the definition of marriage seems straightforward, the contrary can be said about the term ‘family’. Neither the CRPD’s text nor the Committee’s concluding observations specify what relationships fall outside the scope of protection of article 23. The Committee refers to the family most often as a cohabitation of children with their parents,85 contrasting families, for example, to orphanages.86 The concept of ‘family’ also includes non-biological relationships based on adoption87 and foster care.88 The term ‘family’ in other international human rights treaties has been gradually expanded to cover other forms of relationships between adults and children. The European Court of Human Rights (ECtHR), for example, has noted that the existence of family life is a factual question to be determined by the Court, and is not dependent on domestic legal limitations regarding the definition of a family unit.89 Families in this sense can be formed by adults living together with children and raising them as their own without formal recognition. Given the purpose of the CRPD and its general principles, which require full and effective participation and inclusion in society and equality of opportunity,90 the term ‘family’ should be interpreted broadly under article 23 as well, to provide protection to all forms of relationships aimed at raising children in which persons with disabilities might live. Similar to the concept of ‘family’, parenthood, under article 23 CRPD, is not restricted to biological relationships. The CRPD Committee made it clear that parental rights include the right to adoption.91 The importance of parenthood in article 23 is underlined
83 Some countries that restrict the right to marry on the basis of disability allow same sex couples to enter civil unions as an alternative to marriage. Examples include Hungary and the Czech Republic. The CRPD Committee has not commented on the accessibility of civil unions yet. 84 CRPD Committee, Concluding Observations: Uganda UN Doc CRPD/ C/ UGA/ CO/ 1 (12 May 2016) para 46. 85 See eg CRPD Committee, Concluding Observations: Lithuania UN Doc CRPD/C/LTU/CO/1 (11 May 2016) para 43. 86 CRPD Committee, Concluding Observations: Kenya UN Doc CRPD/C/KEN/CO/1 (30 September 2015) para 41. 87 CRPD Committee, Concluding Observations: Czech Republic UN Doc CRPD/C/CZE/CO/1 (15 May 2015) para 45. 88 CRPD Committee, Concluding Observations: Mexico UN Doc CRPD/C/MEX/CO/1 (27 October 2014) para 46. 89 Paradiso and Campanelli v Italy [GC] App no 25358/12 (24 January 2017) para 140. 90 Art 3(c) and (e) CRPD. 91 CRPD Committee, Concluding Observations: Mongolia UN Doc CRPD/C/MNG/CO/1 (13 May 2015) para 35.
fiala-butora
Article 23
639
by the requirement to support persons with disabilities in exercising their parental responsibility,92 allowing persons with disabilities to become parents and to remain parents. Article 23 thus covers future and potential parenthood, by requiring states to support persons with disabilities in retaining their fertility93 and accessing family planning services.94 The term ‘relationships’ in article 23 stresses the importance of developing romantic and sexual relationships, experiences that many persons with disabilities have been long denied. By explicitly recognizing these relationships, the CRPD aims to overcome the stereotype of persons with disabilities as asexual,95 and provides persons with disabilities protection and support to access informal relationship that may not be covered under the notion of family.96 As Tom Shakespeare argues, this should include same-sex relationships and other sexual preferences.97 An interesting question, so far unanswered by the CRPD Committee, concerns relationships that are not supported, but merely tolerated by domestic authorities. Certain sexual practices might be frowned upon, but nevertheless not prohibited by members states, such as prostitution, sadism, and masochism, as well as other sexual practices considered perverse. Non-disabled persons can access these if they do not require support from the state. It follows from the logic of the CRPD that persons with disabilities should be supported, if they so require, to be able to engage in these practices as well, otherwise they would be disadvantaged compared to their non-disabled peers. This would constitute a form of unlawful discrimination. However, it seems very difficult to require states to provide support to access these relationships which their official policies might not even recognize.
3.3 On an Equal Basis with Others The term ‘on an equal basis with others’ underlines the overarching obligation of article 23 to eliminate discrimination against persons with disabilities in the area of family life and relationships. This should be interpreted together with the general prohibition on discrimination in article 5 CRPD, making it clear that all forms of discrimination on the basis of disability are prohibited under article 23. This includes direct discrimination, indirect discrimination, and the failure to provide reasonable accommodation.98 The term ‘on an equal basis with others’ stresses that persons with disabilities should have equal opportunities to access relationships and family rights in the same manner as persons without disabilities. States parties should therefore eliminate all disadvantages stemming from disability, by eliminating explicit and implicit restrictions based on disability and by providing support to persons with disabilities to be able to exercise their rights in practice. Article 23 does not create new rights for persons with disabilities, it only makes accessible those rights that are already available for persons without disabilities.
92 eg CRPD Committee, Concluding Observations: Slovakia UN Doc CRPD/C/SVK/CO/1 (17 May 2016) para 65. 93 CRPD Committee, Concluding Observations: Peru UN Doc CRPD/ C/ PER/ CO/ 1 (16 May 2012) para 34. 94 CRPD Committee, Concluding Observations: Belgium UN Doc CRPD/C/BEL/CO/1 (28 October 2014) para 35. 95 CRPD Committee, Concluding Observations: Ethiopia UN Doc CRPD/C/ETH/CO/1 (4 November 2016) para 50. 96 CRPD Committee, Concluding Observations: Qatar UN Doc CRPD/ C/ QAT/ CO/ 1 (2 October 2015) para 41. 97 98 Shakespeare (n 3). See the commentary to Art 5 CRPD in this volume.
fiala-butora
640
Respect for Home and the Family
4. Paragraph 1 (a) A surprisingly large number of states parties still explicitly restrict the right of persons with disabilities to marry. From the forty-six concluding observations published so far,99 the CRPD Committee has found such limitations in sixteen cases. In light of such a widespread practice, it is surprising that other human rights bodies have not yet found violations of mainstream human rights treaties in this regard. The right to marry thus underlines the importance of adopting the CRPD as noted by Michael Stein because persons with disabilities possessed implied, but not actual, human rights protection under mainstream treaties.100 The prohibition to marry may be based on various legal criteria. It is often a consequence of a general deprivation of legal capacity101 or interdiction.102 It can be the result of a specific decision restricting the legal capacity to marry,103 or require special authorization by courts or guardians for persons with disabilities wishing to marry.104 It can also be explicitly based on an explicit reference to disability itself, affecting either persons with disabilities in general,105 or a subset of these,106 such as persons with psychosocial107 and intellectual disability,108 blind, or blind-deaf persons.109 Some countries, such as Argentina,110 choose a combination of these criteria, preventing both incapacitated persons and the ‘insane’ to marry.111 The CRPD Committee emphasized in all these cases that article 23 requires the review and repeal of legislation preventing persons with disabilities to marry.112 Paragraph 1(a) can also be violated by practices making it more difficult for persons with disabilities to exercise their rights. Even in the absence of a legal prohibition, partners Not counting the EU, which does not have competence to restrict the right to marry. Michael Ashley Stein, ‘Disability Human Rights’ (2007) 95 Cal L Rev 75, 82. 101 CRPD Committee, Concluding Observations: Turkmenistan UN Doc CRPD/C/TKM/CO/1 (13 May 2015) para 37; CRPD Committee, Concluding Observations: Lithuania UN Doc CRPD/C/LTU/CO/1 (11 May 2016) para 43. 102 CRPD Committee, Concluding Observations: Bolivia UN Doc CRPD/C/BOL/CO/1 (4 November 2016) para 53. 103 CRPD Committee, Concluding Observations: Czech Republic UN Doc CRPD/C/CZE/CO/1 (15 May 2015) para 45; CRPD Committee, Concluding Observations: Portugal UN Doc CRPD/C/PRT/CO/1 (20 May 2016) para 42. 104 CRPD Committee, Concluding Observations: Colombia UN Doc CRPD/ C/ COL/ CO/ 1 (30 September 2016) para 52. 105 CRPD Committee, Concluding Observations: Uganda UN Doc CRPD/C/UGA/CO/1 (12 May 2016) para 46. 106 CRPD Committee, Concluding Observations: Mexico UN Doc CRPD/C/MEX/CO/1 (27 October 2014) para 45; CRPD Committee, Concluding Observations: Thailand UN Doc CRPD/C/THA/CO/1 (12 May 2016) para 43; CRPD Committee, Concluding Observations: Guatemala UN Doc CRPD/C/GTM/ CO/1 (30 September 2016) para 57. 107 CRPD Committee, Concluding Observations: Gabon UN Doc CRPD/C/GAB/CO/1 (2 October 2015) para 50. 108 CRPD Committee, Concluding Observations: Kenya UN Doc CRPD/C/KEN/CO/1 (30 September 2015) para 41. 109 CRPD Committee, Concluding Observations: Chile UN Doc CRPD/ C/ CHL/ CO/ 1 (13 April 2016) para 47. 110 CRPD Committee, Concluding Observations: Argentina UN Doc CRPD/C/ARG/CO/1 (8 October 2012) para 35. 111 A similar solution is used by Slovakia; see CRPD Committee, Concluding Observations: Slovakia UN Doc CRPD/C/SVK/CO/1 (17 May 2016) para 65. 112 CRPD Committee, Concluding Observations: Turkmenistan UN Doc CRPD/C/TKM/CO/1 (13 May 2015) para 38. 99
100
fiala-butora
Article 23
641
can still be prevented from marrying in practice because of their disability.113 They might also be denied support accessible to others, such as in the United Arab Emirates, where financial assistance to newlyweds can be denied to persons with disabilities on the basis of a medical examination, contrary to the requirements of article 23.114 Even if persons with disabilities are not prevented outright from marrying, they might face financial, physical, and attitudinal barriers and lack of support mechanisms that constitute an obstacle to founding a family. The CRPD Committee noted the existence of these wider societal barriers with regard to Hungary115 and El Salvador116 and urged these countries to take adequate and appropriate measures to overcome them. By doing so, the Committee underlined that the right to marry involves support to persons with disabilities to marry and found a family. It is not evident how far positive obligations extend. The omission of access to relationships from paragraph 1(a) might signal that the state is not required to actively support persons with disabilities to engage in romantic relationships. The right to marry applies to ‘intending spouses’ only; if a person does not have a partner, the state is not required to provide them with one. However, such an interpretation would ignore the difficulties and obstacles persons with disabilities are facing in establishing romantic relationships. Those living in institutions subject to a regimented life especially, and often segregated by sex, might find it very difficult to find an ‘intending spouse’. The level of intrusiveness varies, but control over the sexual and romantic life of residents is a common feature of institutional life, including of persons with mobility impairments.117 In such situations, the states parties’ responsibility to provide support in developing relationships is clearly engaged. The CRPD Committee indicated so with regard to Belgium, although in very unspecific terms.118 The Committee has not yet commented on the situation of persons living in the community from the perspective of accessing relationships. Hopefully, it will find the time to develop its approach in this area once directly discriminatory restrictions on marriage have been overcome. The opening paragraph of article 1 CRPD, which refers to all matters concerning relationships, read together with the general prohibition of discrimination under article 5, provide ample opportunity for the Committee to find ways to require support for persons with disabilities to access relationships. In the absence of access to relationships, the right to marry might become an illusory promise for many persons with disabilities; a right they simply cannot exercise in practice. 113 CRPD Committee, Concluding Observations: Chile UN Doc CRPD/ C/ CHL/ CO/ 1 (13 April 2016) para 47(b). 114 CRPD Committee, Concluding Observations: United Arab Emirates UN Doc CRPD/C/ARE/CO/1 (3 October 2016) para 41. 115 CRPD Committee, Concluding Observations: Hungary UN Doc CRPD/C/HUN/CO/1 (22 October 2012) para 36. 116 CRPD Committee, Concluding Observations: El Salvador UN Doc CRPD/C/SLV/CO/1 (8 October 2013) para 47. 117 See report of the Czech Ombudsman about institutions for persons with mobility impairments: Otakar Motejl, Zpráva z Návštěv Zařízení (Ústavy Sociální Péče) [Report on the visit of institutions (Social Care Homes)] (2006). The Czech Ombudsman found that residents’ right to form intimate relationships was limited. Sexual relations, cohabitation, and marriage were subject to monitoring, requests, and approval. Approval was often denied if the request to form an intimate partnership was found not to have prospects of a stable, long-term relationship. 118 CRPD Committee, Concluding Observations: Belgium UN Doc CRPD/C/BEL/CO/1 (28 October 2014) para 34.
fiala-butora
642
Respect for Home and the Family
Although paragraph 1(a) applies to persons without specifying their gender, the CRPD Committee noted the unequal position of woman with disabilities compared to men to exercise their right to marriage and family.119 Overcoming multiple (intersectional) discrimination on the basis of gender and disability might require special measures, therefore the Committee emphasized the importance of addressing the situation of women and men separately.120
5. Paragraph 1 (b) The various paragraphs of article 23 are connected and overlap to some extent, as most concern the relationship between parents and children. The CRPD Committee does not indicate which specific paragraphs or subparagraphs are engaged by various discriminatory practices. It typically refers to restrictions on ‘parental rights’ as violations of article 23 as a whole.121 It is, therefore, somewhat artificial to align sub-paragraphs with separate obstacles to parenthood which persons with disabilities are facing. Many issues fall under several paragraphs. Nevertheless, it is possible to identify the main focus for each sub-paragraph. Paragraph 1(b) is thus concerned with the chronological first step in the parent-child relationship, with the act of becoming a parent. Paragraph 1(b) recognizes the right of persons with disabilities to decide on the number and spacing of their children. Various practices have been used by states parties to prevent persons with disabilities from realizing this right. Preventing couples from living together, although widespread, usually does not extend to married couples.122 These issues are subsumed under article 1(a) CRPD, which grants the right to marry and found a family. The CRPD Committee has so far not found a state that prevents married couples from seeing each other. However, opportunities for family life can be undermined by various financial, physical, and attitudinal barriers and the lack of support services to overcome these.123 The lack of community-based living arrangements in particular may prevent couples with disabilities to live together and have children. The Committee has clarified that states are under an obligation to enable men and women to found a family by taking appropriate measures to overcome all barriers.124 Involuntary abortions constitute a specific and particularly serious intrusion with reproductive choices. They constitute common practice in segregated institutions as a form of protection against unwanted pregnancies.125 It is thus quite surprising that the CRPD
119 CRPD Committee, Concluding Observations: United Arab Emirates UN Doc CRPD/C/ARE/CO/1 (3 October 2016) para 41. 120 CRPD Committee, Concluding Observations: Qatar UN Doc CRPD/C/QAT/CO/1 (2 October 2015) para 41. 121 CRPD Committee, Concluding Observations: Guatemala UN Doc CRPD/ C/ GTM/ CO/ 1 (30 September 2016) para 58. 122 Hungarian Disability Caucus, ‘Disability rights or disabling rights?’ CRPD alternative report (2010) 151. 123 CRPD Committee, Concluding Observations: Hungary UN Doc CRPD/C/HUN/CO/1 (22 October 2012) para 36. 124 ibid para 37. 125 See a report from Slovak institutions: ANNWIN, Dodržiavanie ľudských práv v zariadeniach sociálnych služieb na Slovensku [Fulfilling human rights in social care institutions in Slovakia] (October 2005) [3]. The report found complete lack of sexual education and access to birth control methods in some institutions where male and female residents were living together. Some residents were sexually exploited. The subject was a taboo for the institutions’ staff, and involuntary abortions were used to prevent births.
fiala-butora
Article 23
643
Committee has condemned forced abortions only with regard to China, where domestic laws explicitly authorize abortions without the consent of women with disabilities.126 In most other countries, abortions are authorized with the consent of the incapacitated woman’s guardian.127 While this makes it no less involuntary from the perspective of a woman with disability, formally the abortion takes place with consent. It is unfortunate that the CRPD Committee has not yet commented on this issue, which is contrary to the requirements of both article 23 and article 12 of the CRPD. The CRPD Committee has not identified other direct interventions with the rights specified in paragraph 1(b). In particular, no reports were submitted about women with disabilities forced to give birth to children against their will. This might be a reflection of the general attitude against childbearing by persons with disabilities, which excepts them from pro-natalist policies. Some of these policies can be quite intrusive, as found by the European Court of Human Rights,128 but they might not be applied to persons with disabilities. Paragraph 1(b) requires states parties to meet two specific positive obligations in supporting persons with disabilities to have children. The first concerns the provision of adequate information on reproductive choices and family planning.129 The CRPD Committee has iterated that such information must be provided in an accessible format,130 by accessible means and modes,131 and be age-appropriate132 in order to comply with article 23. Practices such as exemption of pupils with disabilities from sexual education classes might presumably violate this requirement, although the Committee has not been given the opportunity to comment on the matter. The obligation can be understood also more widely, not simply as a matter of providing information on family planning to persons with disabilities, but also raising awareness about their reproductive rights with healthcare professionals and the general public. This is underlined by the CRPD Committee’s comments to Uganda, where it stressed the need to overcome negative attitudes, myths, and stereotypes against the capacity for family life for persons with disabilities.133 The other specific positive obligation in paragraph 1(b) concerns the provision of support to persons with disabilities to enable them to make decisions about childbearing. The CRPD Committee has emphasized that states parties must take adequate measures, including the adoption of an appropriate legal framework and support measures to increase the parenting skills of persons with disabilities.134 This
126 CRPD Committee, Concluding Observations: China UN Doc CRPD/C/CHN/CO/1 (15 October 2012) para 33. 127 Dodržiavanie ľudských práv v zariadeniach sociálnych služieb na Slovensku (n 125). 128 For an example of such pro-natalist policies see: Van Raalte v the Netherlands App no 20060/92 (21 February 1997). 129 CRPD Committee, Concluding Observations: Bolivia UN Doc CRPD/C/BOL/CO/1 (4 November 2016) para 53. 130 CRPD Committee, Concluding Observations: Croatia UN Doc CRPD/ C/ HRV/ CO/ 1 (15 May 2015) para 34. 131 CRPD Committee, Concluding Observations: Uganda UN Doc CRPD/C/UGA/CO/1 (12 May 2016) para 46. 132 CRPD Committee, Concluding Observations: Belgium UN Doc CRPD/C/BEL/CO/1 (28 October 2014) para 34. 133 CRPD Committee, Concluding Observations: Uganda UN Doc CRPD/C/UGA/CO/1 (12 May 2016) para 46. 134 CRPD Committee, Concluding Observations: Turkmenistan UN Doc CRPD/C/TKM/CO/1 (13 May 2015) para 38.
fiala-butora
644
Respect for Home and the Family
includes financial support and accessible healthcare services related to pregnancy and delivery.135
6. Paragraph 1 (c) Persons with disabilities are at a particular risk of being sterilized against their will, which is a serious and often irreversible intrusion into their reproductive health. Reasons can range from contraception,136 to easier care for girls with disabilities undergoing puberty. The latter issue became famously controversial after the case of Ashley X, a Seattle girl with intellectual disability, became public. At age six, Ashley was subjected to growth attenuation, hysterectomy, bilateral breast bud removal, and appendectomy to protect her from the discomfort of menstruation and fully grown breasts, and ‘to reduce the long-term complications of puberty in general’.137 Her treatment, now called Ashley treatment, was widely criticized.138 Paragraph 1 includes a separate sub-paragraph (c) to emphasize the right of persons with disabilities to retain their fertility on an equal basis with others. The Ashley treatment would very likely violate this provision if a similar case came before the CRPD Committee. Forced sterilizations can be expressly authorized by law,139 or based on some form of legal incapacitation, and executed on the basis of a guardian’s consent.140 The constitutionality of surgical sterilization of minors with intellectual and psychosocial disabilities was recently upheld by a decision of the Colombian Constitutional Court.141 All such practices violate article 23, which requires states parties to protect persons with disabilities from forced sterilizations regardless142 of the perpetrator, and all other discriminatory practices compromising their reproductive health.143 This includes raising awareness about the reproductive health of persons with disabilities among healthcare professionals.144 Reproductive choices of persons with disabilities are also compromised by unwanted administration of contraceptives. Although not a permanent limitation on their fertility, such practices might be contrary to paragraph 1(c), and/or 1(b). Involuntary 135 CRPD Committee, Concluding Observations: Chile UN Doc CRPD/C/CHL/CO/1 (13 April 2016) para 47. 136 CRPD Committee, Concluding Observations: Peru UN Doc CRPD/C/PER/CO/1 (16 May 2012) para 34. 137 Daniel F Gunther, Douglas S Diekema, ‘Attenuating Growth in Children with Profound Developmental Disability—A New Approach to an Old Dilemma’ (2006) 160 Arch Pediatr Adolesc Med 1014. 138 The Ashley treatment: ‘Her life is as good as we can possibly make it’, The Guardian (15 March 2012), available at: (accessed 1 May 2017). 139 CRPD Committee, Concluding Observations: China UN Doc CRPD/C/CHN/CO/1 (15 October 2012) para 33. 140 CRPD Committee, Concluding Observations: Peru UN Doc CRPD/C/PER/CO/1 (16 May 2012) para 34. 141 Decision C-131 of 2014, Colombian Constitutional Court (11 March 2014), English summary available at: . 142 CRPD Committee, Concluding Observations: Hungary UN Doc CRPD/C/HUN/CO/1 (22 October 2012) para 38. 143 CRPD Committee, Concluding Observations: Dominican Republic UN Doc CRPD/C/DOM/CO/1 (8 May 2015) para 42. 144 CRPD Committee, Concluding Observations: Dominican Republic UN Doc CRPD/C/DOM/CO/1 (8 May 2015) para 43.
fiala-butora
Article 23
645
contraception, abortions, and sterilizations are all manifestations of the attitude rejecting the reproductive autonomy of persons with disabilities. By denying them sexual education and access to safe sex and relationships, many caregivers resort to forced abstinence and other methods of control. This is especially true in segregated institutions, where persons with disabilities can be physically restrained and their access to information and help is very limited. The isolation and the atmosphere of control can lead to widespread sexual abuse and its denial.145 Forced contraception is one method of control from a range of practices reflecting attitudes that the CRPD aims to overcome. However, the CRPD Committee has not yet been given the opportunity to comment on the practice under article 23.
7. Paragraph 2 Although the paragraphs of article 23 overlap to some degree, they can be separated logically and chronologically. While paragraph 1 is mainly concerned with the right to procreate, paragraph 2 protects the right of parents with disabilities to exercise their parental rights once their children are born. As testified by the CRPD Committee’s concluding observations, countries all over the world resort to practices restricting the control of parents with disabilities over their children. Even if persons with disabilities manage to overcome obstacles preventing them from founding a family and having children (contrary to the requirements of paragraph 1), their legal relationship with their children is not secure and puts the family at risk of break-up and separation. Parental rights constitute a wide concept, not defined by the CRPD or the CRPD Committee. Paragraph 2 lists guardianship, wardship and trusteeship as examples, noting that other similar institutions may exist and are thus covered by article 23. The main object of parental rights is to make decisions about and on behalf of one’s children: where the child will live, which school or nursery it will attend, what medical procedures it will undergo, how its property will be managed, etc. Some countries list other issues that can be specifically restricted on the basis of disability, such as naming a child and changing its name.146 Restrictions on parental rights can seriously interfere with family life, and can lead to separation of parents with disabilities from their children.147 Whether motivated by paternalism and control or concern for children’s interests, restrictions based on disability are based on outdated negative stereotypes about the parenting skills of persons with disabilities,148 and cannot be accepted under paragraph 2.149 If parental rights of some persons with disabilities have already been restricted, abandoning the practice is not sufficient to meet the requirements of the CRPD. The state is required to set up a review Dodržiavanie ľudských práv v zariadeniach sociálnych služieb na Slovensku (n 125). 14 § (6) 3 c) of the old Civil Code of Hungary, Law IV of 1959, in force until 1 January 2014. The new Civil Code, currently in force, does not list specific areas of restrictions. 147 CRPD Committee, Concluding Observations: Costa Rica UN Doc CRPD/C/CRI/CO/1 (12 May 2014) para 43. 148 CRPD Committee, Concluding Observations: Ethiopia UN Doc CRPD/C/ETH/CO/1 (4 November 2016) para 50. 149 CRPD Committee, Concluding Observations: Croatia UN Doc CRPD/ C/ HRV/ CO/ 1 (15 May 2015) para 34. 145 146
fiala-butora
646
Respect for Home and the Family
mechanism to restore the custody of children to parents from whom it was revoked on the grounds of their disability.150 Parental rights can be limited on the basis of disability itself,151 very often intellectual152 or psychosocial disability.153 Some states, such as Mongolia, fail to ensure parental rights to persons with disabilities at all.154 Others lack appropriate child custody policies, making parents with disabilities vulnerable in their family relationships.155 Lack of security in parental rights can particularly affect women with disabilities, especially in societies where women in general are at a disadvantage compared to men in exercising their parental rights.156 Restrictions of parental rights are often the consequence of limitations of legal capacity.157 Civil codes can limit the custody of parents with disabilities over their children,158 in which case domestic laws must be amended to bring them in line with paragraph 2 of article 23.159 The CRPD Committee clarified that interferences with parental rights based on legal capacity limitations constitute discrimination on the basis of disability and hence are not allowed under paragraph 2.160 Parental rights of persons with disabilities can be limited only on the basis of disability-neutral criteria, on an equal basis with non- disabled parents. Paragraph 2 is not limited to exercising parental rights over one’s biological children, but also includes a specific right to adoption. This includes participation in international adoptions as well.161 The CRPD Committee often emphasizes the exclusion of persons with disabilities from access to adoption.162 Legal obstacles based on disability,163 specific
150 CRPD Committee, Concluding Observations: Chile UN Doc CRPD/ C/ CHL/ CO/ 1 (13 April 2016) para 48. 151 CRPD Committee, Concluding Observations: New Zealand UN Doc CRPD/C/NZL/CO/1 (31 October 2014) para 47, where the domestic legislation was based on ‘any physical or mental incapacity’. 152 CRPD Committee, Concluding Observations: Costa Rica UN Doc CRPD/C/CRI/CO/1 (12 May 2014) para 43. The domestic legislation affected ‘women with disabilities, especially those with psychosocial and intellectual disabilities’. 153 CRPD Committee, Concluding Observations: Mexico UN Doc CRPD/C/MEX/CO/1 (27 October 2014) para 46. The Committee mandated that the state provides sufficient support to mothers with psychosocial disabilities. 154 CRPD Committee, Concluding Observations: Mongolia UN Doc CRPD/C/MNG/CO/1 (13 May 2015) para 34. 155 CRPD Committee, Concluding Observations: Dominican Republic UN Doc CRPD/C/DOM/CO/1 (8 May 2015) para 42. 156 CRPD Committee, Concluding Observations: United Arab Emirates UN Doc CRPD/C/ARE/CO/1 (3 October 2016) para 41. 157 CRPD Committee, Concluding Observations: Guatemala UN Doc CRPD/ C/ GTM/ CO/ 1 (30 September 2016) para 57. 158 CRPD Committee, Concluding Observations: Czech Republic UN Doc CRPD/C/CZE/CO/1 (15 May 2015) para 45, noting that Czech laws ‘explicitly provide for restriction of legal capacity in family matters, especially the right to marriage, parental responsibility and adoption’. 159 CRPD Committee, Concluding Observations: Portugal UN Doc CRPD/ C/ PRT/ CO/ 1 (20 May 2016) para 43. 160 CRPD Committee, Concluding Observations: Brazil UN Doc CRPD/C/BRA/CO/1 (29 September 2015) para 41. 161 CRPD Committee, Concluding Observations: Sweden UN Doc CRPD/ C/ SWE/ CO/ 1 (12 May 2014) para 45. 162 CRPD Committee, Concluding Observations: Mongolia UN Doc CRPD/C/MNG/CO/1 (13 May 2015) para 34. 163 CRPD Committee, Concluding Observations: Portugal UN Doc CRPD/ C/ PRT/ CO/ 1 (20 May 2016) para 42.
fiala-butora
Article 23
647
forms of disability,164 or legal capacity165 are contrary to the requirements of article 23 and must be repealed.166 States parties are not merely required to abolish practices prohibiting persons with disabilities from adopting children, but should facilitate adoption167 to ensure that persons with disabilities can adopt on an equal basis with others.168 This includes abolishing administrative barriers, including inaccessible procedures169 that prevent would-be parents with disabilities to adopt children with or without disabilities.170 The CRPD Committee also considered that additional investigations by the Swedish authorities to assess the parenting ability of would-be parents with disability constitute discrimination on the basis of disability.171 Parents with disabilities can be subject to investigations in the course of adoption proceedings, but only on an equal basis with others: their disability should not be a factor giving rise to more thorough investigations.172 Closely connected to the right of adoption is the right to participate in the adoption proceedings of one’s own child, and specifically the right to prevent one’s own child from being adopted.173 This is closely related to other forms of separation of children from parents, and therefore is discussed under paragraphs 3 and 4. The second sentence of paragraph 2 requires states parties not merely to recognize parental rights of persons with disabilities, but to provide appropriate assistance for them in the performance of their child-rearing responsibilities. Lack of support is one of the risk factors leading to the abandonment of children by parents,174 therefore assistance serves an important preventive function175 by ensuring that persons with disabilities can retain their parental rights.176 States parties are required to provide all the necessary support to guarantee an effective right for parents to exercise their parental rights and
164 CRPD Committee, Concluding Observations: Azerbaijan UN Doc CRPD/C/AZE/CO/1 (12 May 2014) para 36. 165 CRPD Committee, Concluding Observations: Czech Republic UN Doc CRPD/C/CZE/CO/1 (15 May 2015) para 45. 166 CRPD Committee, Concluding Observations: Portugal UN Doc CRPD/ C/ PRT/ CO/ 1 (20 May 2016) para 43. 167 CRPD Committee, Concluding Observations: Germany UN Doc CRPD/C/DEU/CO/1 (13 May 2015) para 43. 168 CRPD Committee, Concluding Observations: Croatia UN Doc CRPD/ C/ HRV/ CO/ 1 (15 May 2015) para 34. 169 CRPD Committee, Concluding Observations: Italy UN Doc CRPD/ C/ ITA/ CO/ 1 (6 October 2016) para 53. 170 CRPD Committee, Concluding Observations: Italy UN Doc CRPD/ C/ ITA/ CO/ 1 (6 October 2016) para 53. 171 CRPD Committee, Concluding Observations: Sweden UN Doc CRPD/ C/ SWE/ CO/ 1 (12 May 2014) para 45. 172 ibid. 173 CRPD Committee, Concluding Observations: New Zealand UN Doc CRPD/C/NZL/CO/1 (31 October 2014) para 47. 174 CRPD Committee, Concluding Observations: Guatemala UN Doc CRPD/ C/ GTM/ CO/ 1 (30 September 2016) para 57. 175 CRPD Committee, Concluding Observations: Ukraine UN Doc CRPD/C/UKR/CO/1 (2 October 2015) para 43. 176 CRPD Committee, Concluding Observations: Slovakia UN Doc CRPD/ C/ SVK/ CO/ 1 (17 May 2016) para 66.
fiala-butora
648
Respect for Home and the Family
responsibilities.177 Regrettably, some provide no support at all,178 such as the United Arab Emirates.179 In others, support is inadequately regionally distributed,180 or is in short supply.181 Any support provided must be community-based,182 adequate,183 accessible, and available184 and appropriate to the goal of facilitating the child-rearing responsibilities of persons with disabilities.185 It must be accompanied by adequate safeguards.186 States parties, including developing countries, must commit the necessary resources to family support services to make them effective187 and meet the demand for such services.188 It is incumbent on states to collect disaggregated data on the services provided and the customers making use of them, which allows the CRPD Committee to evaluate whether the level of support is adequate.189 Specific attention must be paid to persons with high support needs, who are in particular danger of becoming unable to exercise their parental rights.190 Support can take the form of social services191 and financial assistance.192 Most likely both are required, as the CRPD Committee stressed in the case of Italy, where it was noted that the state’s duty is to allocate specific financial, social, and other resources so that families can gain access to all the support they require.193 Tax exemptions provided by Italy were deemed inadequate to meet the country’s obligation
177 CRPD Committee, Concluding Observations: Costa Rica UN Doc CRPD/C/CRI/CO/1 (12 May 2014) para 44. 178 CRPD Committee, Concluding Observations: Argentina UN Doc CRPD/C/ARG/CO/1 (8 October 2012) para 36. 179 CRPD Committee, Concluding Observations: United Arab Emirates UN Doc CRPD/C/ARE/CO/1 (3 October 2016) para 41. 180 CRPD Committee, Concluding Observations: Ethiopia UN Doc CRPD/C/ETH/CO/1 (4 November 2016) para 49. 181 CRPD Committee, Concluding Observations: Republic of Korea UN Doc CRPD/C/KOR/CO/1 (29 October 2014) para 43. 182 CRPD Committee, Concluding Observations: Ethiopia UN Doc CRPD/C/ETH/CO/1 (4 November 2016) para 49. 183 CRPD Committee, Concluding Observations: Gabon UN Doc CRPD/C/GAB/CO/1 (2 October 2015) para 50. 184 CRPD Committee, Concluding Observations: El Salvador UN Doc CRPD/C/SLV/CO/1 (8 October 2013) para 48. 185 CRPD Committee, Concluding Observations: Mongolia UN Doc CRPD/C/MNG/CO/1 (13 May 2015) para 34. 186 CRPD Committee, Concluding Observations: Germany UN Doc CRPD/C/DEU/CO/1 (13 May 2015) para 44. 187 CRPD Committee, Concluding Observations: Gabon UN Doc CRPD/C/GAB/CO/1 (2 October 2015) para 51. 188 CRPD Committee, Concluding Observations: Republic of Korea UN Doc CRPD/C/KOR/CO/1 (29 October 2014) para 43. 189 CRPD Committee, Concluding Observations: Brazil UN Doc CRPD/C/BRA/CO/1 (29 September 2015) para 42. 190 CRPD Committee, Concluding Observations: Italy UN Doc CRPD/ C/ ITA/ CO/ 1 (6 October 2016) para 51. 191 CRPD Committee, Concluding Observations: Portugal UN Doc CRPD/ C/ PRT/ CO/ 1 (20 May 2016) para 42. 192 CRPD Committee, Concluding Observations: Italy UN Doc CRPD/ C/ ITA/ CO/ 1 (6 October 2016) para 51. 193 CRPD Committee, Concluding Observations: Italy UN Doc CRPD/ C/ ITA/ CO/ 1 (6 October 2016) para 52.
fiala-butora
Article 23
649
under paragraph 2.194 While low-income families should receive special attention,195 support should be available to others as well.196 When developing a support framework meeting the requirements of article 23, standards developed by other UN bodies should be taken into account. The CRPD Committee referred with approval to the recommendations of the Committee on the Rights of the Child when advising Mexico about an adequate family support framework.197 Assistance extends not only to the home, but also the workplace. Parenthood can be particularly challenging for working parents, who might need to give up employment if they are not adequately supported, as the CRPD Committee noted with regard to Belgium.198 This particularly disadvantages women, who are often the primary caregivers of their children.199 Giving up paid work can lead to poverty, which makes families vulnerable to separation of their children.200 Providing support in the workplace, for example, in the form of adequate maternity leave, is also a way of ensuring an appropriate life-work balance.201 The gravity of lack of adequate parental leave was highlighted by a judgment of the Court of Justice of the European Union (CJEU) in Coleman v Attridge Law.202 In that case, the plaintiff lost her job because she was absent from work to take care of her disabled child. The Court held that her treatment constituted discrimination on the basis of disability. Although encouraging, the decision does not cover all angles of parental leave required to care for a child with disability. Under article 23 CRPD, the CRPD Committee has an opportunity to go beyond the European Court’s narrow holding and explore the implications of raising a disabled child with a view to enhancing the range of accommodations in the workplace.
8. Paragraph 3 While paragraph 2 of article 23 emphasizes the rights of parents with disabilities to family life, paragraph 3 secures the rights of children. The aim of this provision is to prevent the abandonment and neglect of children with disabilities by their families. Abandonment of children by parents is often seen as a failure on the part of parents, something which the state is only indirectly responsible for. Paragraph 3 may thus be differentiated on this basis from paragraph 4, which is concerned with direct state involvement in removing children from families. However, the experiences of persons with
ibid. CRPD Committee, Concluding Observations: Paraguay UN Doc CRPD/C/PRY/CO/1 (15 May 2013) para 56. 196 CRPD Committee, Concluding Observations: Republic of Korea UN Doc CRPD/C/KOR/CO/1 (29 October 2014) para 43. 197 CRPD Committee, Concluding Observations: Mexico UN Doc CRPD/C/MEX/CO/1 (27 October 2014) para 46. 198 CRPD Committee, Concluding Observations: Belgium UN Doc CRPD/C/BEL/CO/1 (28 October 2014) para 34. 199 CRPD Committee, Concluding Observations: Portugal UN Doc CRPD/ C/ PRT/ CO/ 1 (20 May 2016) para 42. 200 CRPD Committee, Concluding Observations: Guatemala UN Doc CRPD/ C/ GTM/ CO/ 1 (30 September 2016) para 57. 201 CRPD Committee, Concluding Observations: European Union UN Doc CRPD/C/EU/CO/1 (2 October 2015) para 58. 202 S Coleman v Attridge Law and Steve Law C-303/06 ECLI:EU:C:2008:415 (17 July 2008). 194 195
fiala-butora
650
Respect for Home and the Family
disabilities in many countries suggest that the state can be implicated in and be responsible for abandonment in various ways. One obvious state failure concerns the lack of adequate support provided to families of children with disabilities, which is closely linked to states parties’ obligations under paragraph 2. The CRPD Committee emphasized, for example, with regard to Guatemala that it is the state’s responsibility to establish a support mechanism for families of children with disabilities to prevent their abandonment.203 States parties should take into account the needs of particularly vulnerable groups, such as children living with single mothers,204 children with severe disabilities,205 and children living in poverty206 who are at greater risk of abandonment.207 Although parental neglect may be a factor in certain cases, the lack of support provided to families may constitute a deliberate choice on the part of the state in order to promote the placement of children with disabilities in institutions.208 Whether intentional policy or a remnant of outdated stereotypes,209 the result is a practice where the state only pays for the care of children with disabilities if their families institutionalize them. This can be coupled with pressure on families imposed by public officials and professionals to give up children with disabilities, as the CRPD Committee noted with regard to Ukraine.210 Such practices make little economic sense, since institutional care is more expensive than care provided by families.211 They clearly violate the state’s obligation under paragraph 3, which requires the provision of adequate community-based support to families.212 The CRPD Committee considered that the expansion of a scheme to build more child institutions violated article 23, since it undermined the right of the child to live in a family.213 Another example of wrong incentives is provided by reference to South Korea. The government was found to provide support to families of children with severe disabilities, while at the same time bestowing more subsidies and benefits to families adopting
203 CRPD Committee, Concluding Observations: Guatemala UN Doc CRPD/ C/ GTM/ CO/ 1 (30 September 2016) para 58. 204 CRPD Committee, Concluding Observations: Republic of Korea UN Doc CRPD/C/KOR/CO/1 (29 October 2014) para 43. 205 CRPD Committee, Concluding Observations: Kenya UN Doc CRPD/C/KEN/CO/1 (30 September 2015) para 42. 206 CRPD Committee, Concluding Observations: Paraguay UN Doc CRPD/C/PRY/CO/1 (15 May 2013) para 56. 207 CRPD Committee, Concluding Observations: Guatemala UN Doc CRPD/ C/ GTM/ CO/ 1 (30 September 2016) para 57. 208 CRPD Committee, Concluding Observations: Slovakia UN Doc CRPD/ C/ SVK/ CO/ 1 (17 May 2016) para 65. 209 CRPD Committee, Concluding Observations: Ethiopia UN Doc CRPD/C/ETH/CO/1 (4 November 2016) para 50. 210 CRPD Committee, Concluding Observations: Ukraine UN Doc CRPD/C/UKR/CO/1 (2 October 2015) para 26. 211 See János Fiala-Butora, ‘The Right to Independent Living and its Limits’ in Malcolm Langford, Michael Ashley Stein (eds), Disability Social Rights (forthcoming 2017). 212 CRPD Committee, Concluding Observations: Ethiopia UN Doc CRPD/C/ETH/CO/1 (4 November 2016) para 49. 213 CRPD Committee, Concluding Observations: Paraguay UN Doc CRPD/C/PRY/CO/1 (15 May 2013) para 55.
fiala-butora
Article 23
651
children with disabilities than their biological families.214 According to the CRPD Committee, this encourages the abandonment of children by their families.215 Even if family support services exist, persons with disabilities might face obstacles in accessing them.216 Parents might not even know about the existence of support services and hence go on to abandon their disabled solely for this reason.217 The provision of insufficient information might amount to negligence on the part of the state, but it can also be the result of wilful neglect, with the aim of saving resources of a local municipality that would have to fund these services.218 Paragraph 3 therefore stresses the state’s obligation to provide early and comprehensive information about the support and services available to families raising children with disabilities.219 The duty to provide information about such services is a separate obligation under paragraph 3, which can be violated separately from the obligation to provide the services per se.220 Lack of funds does not exempt states from their obligations under paragraph 3. States parties are under a strict obligation to prevent neglect and abandonment.221 To review the effective allocation of resources, states parties are required to collect disaggregated data on the support provided.222 They must also establish a monitoring mechanism to overview the effective disbursement of resources throughout the country.223
9. Paragraph 4 Paragraph 4 forbids the separation of children from their families against their parents’ will. Whereas paragraph 3 is concerned with wilful abandonment of children by parents, paragraph 4 covers forceful separation by direct state involvement. Of course, the two issues overlap. States can interfere with parents’ wishes by various means other than forcibly taking their children. They can put pressure on parents to give up their children.224
214 CRPD Committee, Concluding Observations: Republic of Korea UN Doc CRPD/C/KOR/CO/1 (29 October 2014) para 43. 215 ibid. 216 CRPD Committee, Concluding Observations: Thailand UN Doc CRPD/C/THA/CO/1 (12 May 2016) para 43. 217 This is a widespread problem eg in the Czech Republic, where the reform of social services was not accompanied by sufficient publicity campaigns, and even professionals might be unaware of some new type of support measures that could be available to families. Information received from participants of the seminar ‘Representing Children with Disabilities’, MDAC and Forum for Human Rights, Prague (7–9 November 2016). 218 ibid. 219 CRPD Committee, Concluding Observations: Thailand UN Doc CRPD/C/THA/CO/1 (12 May 2016) para 44. 220 CRPD Committee, Concluding Observations: Kenya UN Doc CRPD/C/KEN/CO/1 (30 September 2015) para 42. 221 CRPD Committee, Concluding Observations: Belgium UN Doc CRPD/C/BEL/CO/1 (28 October 2014) para 35. 222 CRPD Committee, Concluding Observations: Brazil UN Doc CRPD/C/BRA/CO/1 (29 September 2015) para 42. 223 CRPD Committee, Concluding Observations: Kenya UN Doc CRPD/C/KEN/CO/1 (30 September 2015) para 42. 224 CRPD Committee, Concluding Observations: Ukraine UN Doc CRPD/C/UKR/CO/1 (2 October 2015) para 26.
fiala-butora
652
Respect for Home and the Family
They can deny the support necessary to raise their children.225 They can also create the wrong incentives, thereby encouraging or pressing for the abandonment of disabled children.226 Azerbaijan, for example, set up an administrative procedure whereby the state machinery was effectively unimpeded to remove children to state custody solely on the basis of their disability.227 These issues can potentially fall under both paragraphs 3 and 4. The CRPD Committee’s observations also reveal practices directly interfering with parental rights that clearly fall under paragraph 4 only. Some states remove children from their families on the basis of the parents’ disability228 or impairment.229 Parents with psychosocial and intellectual disabilities are particularly at risk.230 Declaring women ‘unfit mothers’ on the basis of their disability and taking their children on that ground is a sad practice the CRPD Committee deplored in Costa Rica231 and Serbia.232 These practices clearly violate the state’s obligations under paragraph 4. Children can be taken away from their families not only by direct intervention, but also through legal incapacitation.233 Limiting a parent’s legal capacity in child custody matters can lead to separation without judicial oversight, through the decision of the guardian. Such practices can place women with disabilities at risk, particularly during divorce proceedings. Placing the woman with disability under guardianship circumvents the custody proceedings and judicial guarantees that could take the child’s interests into account, as was stressed by the International Disability Caucus during the fourth session of the Ad Hoc Committee’s meeting.234 A specific form of separation relates to adoption proceedings. When initiating adoption proceedings of a child whose parents are disabled, state bodies can proceed without the parents’ consent in some countries. The CRPD Committee found that New Zealand authorities have an explicit power under law to dispense with the parents’ consent.235 In other countries, incapacitation can have a similar effect, as shown by the European Court
225 CRPD Committee, Concluding Observations: Slovakia UN Doc CRPD/ C/ SVK/ CO/ 1 (17 May 2016) para 65. 226 CRPD Committee, Concluding Observations: Paraguay UN Doc CRPD/C/PRY/CO/1 (15 May 2013) para 55. 227 CRPD Committee, Concluding Observations: Azerbaijan UN Doc CRPD/C/AZE/CO/1 (12 May 2014) para 38. 228 CRPD Committee, Concluding Observations: Germany UN Doc CRPD/C/DEU/CO/1 (13 May 2015) para 44. 229 CRPD Committee, Concluding Observations: Brazil UN Doc CRPD/C/BRA/CO/1 (29 September 2015) para 40. 230 CRPD Committee, Concluding Observations: Serbia UN Doc CRPD/ C/ SRB/ CO/ 1 (23 May 2016) para 45. 231 CRPD Committee, Concluding Observations: Costa Rica UN Doc CRPD/C/CRI/CO/1 (12 May 2014) para 43. The domestic legislation affected ‘women with disabilities, especially those with psychosocial and intellectual disabilities’. 232 CRPD Committee, Concluding Observations: Serbia UN Doc CRPD/ C/ SRB/ CO/ 1 (23 May 2016) para 45. The domestic legislation affected ‘women with disabilities, especially those with psychosocial and intellectual disabilities’. 233 CRPD Committee, Concluding Observations: Brazil UN Doc CRPD/C/BRA/CO/1 (29 September 2015) para 41. 234 Ad Hoc Committee, Daily summary of discussions related to Article 14—Respect for privacy, the home and the family Vol 5 #5 (27 August 2004), available at: . 235 CRPD Committee, Concluding Observations: New Zealand UN Doc CRPD/C/NZL/CO/1 (31 October 2014) para 47.
fiala-butora
Article 23
653
of Human Rights’ (ECtHR) decision in X v Croatia.236 In that case, the Croatian authorities offered for adoption X’s child and avoided obtaining her consent by restricting her legal capacity to adoption matters, among other things. The ECtHR found a violation of the right to private and family life in that case. No doubt, such a scenario would constitute a violation of article 23 CRPD as well. Since the Croatian guardianship law does not differ from many other European countries’ laws, the practice can be much more widespread than is evident from the CRPD Committee’s findings to date. Paragraph 4 does not prohibit all separations of children from their families. It only requires that the separation be necessary in the best interest of the child, subject to judicial review and that it should not be carried out on the basis of a disability of either a child or one or both of the parents. The CRPD Committee has not yet elaborated on how the child’s best interest should be interpreted in these situations. Paragraph 4 clearly prohibits existing practices based on clear reference to disability or lack of legal capacity. However, even without explicit references to disability, parents with disability can be disadvantaged compared to other parents by reason of stigma,237 poverty,238 or their need of support with parenting. Child protection proceedings can be highly subjective, and different families’ situation can be difficult to compare. It is hard to assess what role, if any, a parents’ disability played in a decision to separate a child from the family, if this issue is not explicitly mentioned in the decision. For these reasons courts, including international ones, might defer heavily to the domestic child protection authorities. These difficulties can be illustrated by another decision of the ECtHR in the case of Kutzner v Germany.239 The Kutzner parents had an intellectual disability and their children were taken away from them on this basis, to ensure their intellectual growth. The German authorities offered other justifications, such as conflicts within the family, but it is hard to assess how much weight these had in the decision. Since the interference was based on a prejudiced and scientifically unfounded attitude towards the parenting skills of persons with disabilities, the ECtHR had little difficulty in finding a violation of the right to family life under article 8 of the ECHR. So would presumably find the CRPD Committee under article 23 of the CRPD. However, if the domestic authorities did not put weight on the parents’ disability and instead emphasized other factors, such as the family’s social deprivation, the outcome could have been the same without a successful recourse to international bodies. The child’s best interest can be a double-edged sword. If it is applied to families of persons with disabilities who are more likely to experience social deprivation and be in more need of support than other families, the standard can lead to higher separation rates for them without being explicitly based on disability. Indeed, as was argued by Kenya at the fifth session of the Ad Hoc Committee, the principle had been used in the past to remove the children of parents with disabilities.240 It is, therefore, unfortunate that paragraph 4, unlike previous paragraphs of article 23, does not refer to the state’s positive obligations X v Croatia App no 11223/04 (17 July 2008). CRPD Committee, Concluding Observations: Ethiopia UN Doc CRPD/C/ETH/CO/1 (4 November 2016) para 50. 238 CRPD Committee, Concluding Observations: Mexico UN Doc CRPD/C/MEX/CO/1 (27 October 2014) para 46. 239 Kutzner v Germany App no 46544/99 (26 February 2002). 240 Ad Hoc Committee, Daily summary of discussion at the fifth session Vol 6 #8 (2 February 2005), available at: . 236 237
fiala-butora
654
Respect for Home and the Family
to provide support to families in order prevent occurrences of separation, and stress that persons with disabilities should be subject to separation proceedings on an equal basis with others. These safeguards will hopefully be fostered and established by the CRPD Committee’s observations.241 Paragraph 4 can potentially lead to clashes with the Convention on the Rights of the Child. The child’s best interest is a paramount consideration under the CRC, expressed in its article 3, and also specifically in its article 9 with regard to separation from parents. Article 9 paragraph 1 of the CRC is worded very similarly to article 23 paragraph 4 of the CRPD, but they are not identical. The CRC contains the explicit example of neglect by the parent as a ground for separating a child from her family, which is absent from the CRPD. If a parent with a disability is unable to take care of her child, the CRC, emphasizing the child’s best interests, permits or even favours separation. The CRPD, on the other hand, is stressing the rights of parents with disabilities, whose parenting skills have been historically underestimated, and who therefore suffer from prejudices in separation proceedings. The CRPD’s goal is to ensure support to such parents so that they can exercise their parental rights on an equal basis with others. It is quite possible that the CRPD Committee and the CRC Committee would consider certain scenarios differently. What role disability and the lack of support plays in the neglect, and how the parent’s right should be balanced with the child’s can be a very difficult question. When the level of neglect is high, the CRC Committee might accept or even demand separation of the child, while the CRPD Committee might require that the parent is supported so that she can properly exercise her parental duties. Such cases have not come up yet in the CRPD Committee’s work, but if they do, a consideration of the CRC’s provisions and cooperation with the CRC Committee might be necessary to avoid creating differing standards under these two UN human rights treaties.
10. Paragraph 5 Paragraph 5 of article 23 requires states parties to provide alternatives to institutional care in situations where the family is unable to care for the child. The alternatives offered by the CRPD Committee so far consist of foster care and adoption. In the case of Guatemala, the Committee required the state to adopt measures promoting foster care by providing support to foster families.242 Support to foster families instead of institutions has been stressed by the Committee on other occasions as well.243 With regard to Germany, the Committee recommended measures that provide increased opportunities for the adoption of children with disabilities.244 Administrative barriers preventing children with
241 CRPD Committee, Concluding Observations: Ukraine UN Doc CRPD/C/UKR/CO/1 (2 October 2015) para 43. 242 CRPD Committee, Concluding Observations: Guatemala UN Doc CRPD/ C/ GTM/ CO/ 1 (30 September 2016) para 58. 243 CRPD Committee, Concluding Observations: Paraguay UN Doc CRPD/C/PRY/CO/1 (15 May 2013) para 56; CRPD Committee, Concluding Observations: Mexico UN Doc CRPD/C/MEX/CO/1 (27 October 2014) para 46. 244 CRPD Committee, Concluding Observations: Germany UN Doc CRPD/C/DEU/CO/1 (13 May 2015) para 44.
fiala-butora
Article 23
655
disabilities from being adopted, such as an upper age limit of five years promulgated under Azeri law, can violate the state’s obligations under paragraph 5.245 Support to adoptive families can, however, also become problematic. If the support is higher than that provided to families of origin, it can create the wrong incentives for parents to give up their disabled children.246 Expanding schemes on child homes and institutional care similarly create wrong incentives and can fall short of the requirements of paragraph 5.247 States parties are required to provide support services that prevent or reduce the risk of institutionalization.248 For children, who had already been placed in institutions, the state is required to adopt measures allowing them to return to their families or to substitute families.249
245 CRPD Committee, Concluding Observations: Azerbaijan UN Doc CRPD/C/AZE/CO/1 (12 May 2014) para 38. 246 CRPD Committee, Concluding Observations: Republic of Korea UN Doc CRPD/C/KOR/CO/1 (29 October 2014) para 43. 247 CRPD Committee, Concluding Observations: Paraguay UN Doc CRPD/C/PRY/CO/1 (15 May 2013) para 55. 248 CRPD Committee, Concluding Observations: Hungary UN Doc CRPD/C/HUN/CO/1 (22 October 2012) para 37. 249 CRPD Committee, Concluding Observations: Kenya UN Doc CRPD/C/KEN/CO/1 (30 September 2015) para 41.
fiala-butora
Article 24 Education . States Parties recognize the right of per1 sons with disabilities to education. With a view to realizing this right without discrimination and on the basis of equal opportunity, States Parties shall ensure an inclusive education system at all levels and life-long learning directed to: a. The full development of human potential and sense of dignity and self-worth, and the strengthening of respect for human rights, fundamental freedoms and human diversity; b. The development by persons with disabilities of their personality, talents and creativity, as well as their mental and physical abilities, to their fullest potential; c. Enabling persons with disabilities to participate effectively in a free society. . In realizing this right, States Parties shall 2 ensure that: a. Persons with disabilities are not excluded from the general education system on the basis of disability, and that children with disabilities are not excluded from free and compulsory primary education, or from secondary education, on the basis of disability; b. Persons with disabilities can access an inclusive, quality and free primary education and secondary education on an equal basis with others in the communities in which they live; c. Reasonable accommodation of the individual’s requirements is provided; d. Persons with disabilities receive the support required, within the general education system, to facilitate their effective education; e. Effective individualized support measures are provided in environments that maximize academic and social development, consistent with the goal of full inclusion.
anastasiou, gregory, and kauffman
. States Parties shall enable persons with dis3 abilities to learn life and social development skills to facilitate their full and equal participation in education and as members of the community. To this end, States Parties shall take appropriate measures, including: a. Facilitating the learning of Braille, al ternative script, augmentative and alternative modes, means and formats of communication and orientation and mobility skills, and facilitating peer support and mentoring; b. Facilitating the learning of sign language and the promotion of the linguistic identity of the deaf community; c. Ensuring that the education of persons, and in particular children, who are blind, deaf or deaf-blind, is delivered in the most appropriate languages and modes and means of communication for the individual, and in environments which maximize academic and social development. . In order to help ensure the realization 4 of this right, States Parties shall take appropriate measures to employ teachers, including teachers with disabilities, who are qualified in sign language and/or Braille, and to train professionals and staff who work at all levels of education. Such training shall incorporate disability awareness and the use of appropriate augmentative and alternative modes, means and formats of communication, educational techniques and materials to support persons with disabilities. . States Parties shall ensure that persons 5 with disabilities are able to access general tertiary education, vocational training, adult education and lifelong learning without discrimination and on an equal basis with others. To this end, States Parties shall ensure that reasonable accommodation is provided to persons with disabilities.
Article 24 1. Introduction and Background 2. Travaux Préparatoires 3. Paragraph 1 (Chapeau): The Right of Persons with Disabilities to Education 4. Paragraph 2 4.1 Paragraph 2(a): Non-Exclusion 4.2 Paragraph 2(b): Accessibility
4.2.1 Access to an Inclusive, Quality, and Free Primary Education and Secondary Education on an Equal Basis 4.2.2 On an Equal Basis with Others in the Communities in which They Live
4.3 Paragraph 2(c): Reasonable Accommodation 4.4 Paragraph 2(d): Individualized Support 4.5 Paragraph 2(e): The Educational Environment 4.5.1 4.5.2 4.5.3 4.5.4
Full Inclusion Full Inclusion as Totally Supportive Environments Special Education The Right to Choose a School
5. Paragraph 3 5.1 Accessibility 5.2 Environments which Maximize Academic and Social Development for Students with Sensory Disabilities 5.3 Appropriate Measures—Facilitating Learning 5.4 Narrow View of Appropriate Measures 6. Paragraph 4 6.1 Appropriate Measures—Teacher Training 6.2 Prioritizing Certain Disabilities 7. Paragraph 5: Tertiary Education and Life-Long Learning
657 657 666 670 674 675 678 678 681 682 685 686 686 689 690 694 696 696 698 698 699 700 700 702 703
1. Introduction and Background Article 24 formally recognizes the right of persons with disabilities (‘PWD’) to education and lifelong learning, specifying obligations of states parties that are necessary for realizing this right. Consistent with the Convention on the Rights of Persons with Disabilities (‘CRPD’) as a whole and with other human rights treaties,1 it seeks to eliminate discrimination against and equalize educational opportunities for PWD. While children’s universal right to education was previously recognized by the Universal Declaration of Human Rights (‘UDHR’), the International Covenant on Economic, Social and Cultural Rights (‘ICESCR’2), and the UN Convention on the Rights of the Child (‘CRC’3), it remains a global reality that enrollment and completion rates for both (compulsory) primary and secondary education are much lower among PWD than among their same-age peers without disabilities.4 Article 24 1 eg International Covenant on Civil and Political Rights (adopted 16 December 1966, entered into force 23 March 1976) 999 UNTS 171 Arts 2(1) and 26; European Convention for the Protection of Human Rights and Fundamental Freedoms (ECHR) Art 14 and Art 1 of Protocol 12. 2 ICESCR (16 December 1966, entry into force 3 January 1976) 999 UNTS 171 arts 13, 14. 3 CRC (adopted by General Assembly Res 44/25 20 November 1989, entered into force 23 March 1976) arts 28, 29. 4 Lawrence Kofi Ametepee and Dimitris Anastasiou, ‘Special and Inclusive Education in Ghana: Status and Progress, Challenges and Implications’ (2015) 41 International Journal of Educational Development 143–52;
anastasiou, gregory, and kauffman
658
Education
seeks to remedy this and other gaps by making it explicit that the general right to education also applies specifically to PWD. Article 24’s formal guarantee of the right to education for PWD has value per se and remains an indispensable prerequisite for supporting PWD to participate effectively in society and attain their full human potential. Like article 2(1) of the ICESCR, article 4(2) of the CRPD spells out that ‘[w]ith regard to economic, social and cultural rights, each State Party undertakes to take measures to the maximum of its available resources . . . within the framework of international cooperation, with a view to achieving progressively the full realization of these rights . . .’. Consequently, the right to education is subject to progressive realization.5 On the one hand, the concept of progressive realization constitutes a recognition that full realization of article 24 is not achievable in a short period of time; on the other hand, states parties have a continuing obligation to move as expeditiously and effectively as possible6 towards that goal. In the General Comment No 4, addressing article 24, the CRPD Committee was clear, asking state parties to commit ‘sufficient financial and human resources . . .’. and to ‘allocate budgets using mechanisms available under public procurement processes and partnerships with the private sector . . .’.7 The lack of financial support and the allocation of human resources to progressively realize the right to education is one of the most common issues identified by the CRPD Committee on its Concluding Observations on the periodic reports of several countries, showing the fundamental socioeconomic dimensions of the right to education.8 Nevertheless, we contend that several tensions and ambiguities embodied in article 24 raise questions about its efficacy for ultimately achieving its important vision. For reasons we will explain, despite its categorization as an ‘economic, social and cultural right’, article 24 appears to operate in practice primarily as an antidiscrimination measure which inhibits its potential for securing socio-economic justice for all PWD. In this regard, it diverges from the paradigm that has characterized other international statements on the right to education (namely the travaux of the UDHR of 1948),9 and international legal instruments, especially the ICESCR10 and CRC,11 which for the most part have Dimitris Anastasiou and Clayton E Keller, ‘International Differences in Provision for Exceptional Learners’ in James M Kauffman and Daniel P Hallahan (eds), Handbook of Special Education (1st edn, Routledge 2011) 773–87; Dimitris Anastasiou and Clayton E Keller, ‘Cross-national Differences in Special Education: A Typological Approach’ in James M Kauffman, Daniel P Hallahan, and Paige C Pullen (eds), Handbook of Special Education (2nd edn, Routledge 2017) 897–910; Dimitris Anastasiou and Clayton E Keller, ‘Cross-National Differences in Special Education Coverage: An Empirical Analysis’ (2014) 80 Exceptional Children 353–67; Dimitris Anastasiou, James M Kauffman, and Santo Di Nuovo ‘Inclusive Education in Italy: Description and Reflections on Full Inclusion’ (2015) 30 European Journal of Special Needs Education 429–43; James M Kauffman, Dimitris Anastasiou, Jeanmarie Badar, Jason C Travers, and Andrew L Wiley, ‘Inclusive Education Moving Forward’ in Jeffrey P Bakken and Festus E Obiakor (eds) Advances in Special Education, Vol. 32— General and Special Education in an Age of Change: Roles of Professionals Involved (Emerald 2016) 153–77; WHO, World Report on Disability (WHO Press 2011) 205–32. 5 UN Committee on the Rights of Persons with Disabilities ‘General Comment No 4’ (25 November 2016) UN Doc CRPD/C/GC/4, paras 23, 30, 39, 40, 67. 6 CESCR, ‘General Comment No 3: The Nature of States Parties’ Obligations (Art 2, para 1, of the Covenant)’ (1990) para 9. 7 CRPD Committee, ‘General Comment No 4’ (n 5) para 67. 8 The CRPD Committee has made several recommendations about the allocation of adequate financial and human resources to Czech Republic, Chile, Spain, Peru, Thailand, Tunisia and many other countries. See eg ‘[t]he Committee calls upon the State party to intensify its efforts and to allocate sufficient financial and human resources for reasonable accommodations that will enable boys and girls with disabilities . . . ’ in CRPD Committee, ‘Concluding Observations on the Initial Report of Czech Republic’ CRPD/C/CZE/CO/1 (15 April 2015) para 48. 9 10 UDHR (adopted 10 December 1948 UNGA Res 217 A(III) Art 26. ICESCR arts 13, 14. 11 CRC arts 28, 29.
anastasiou, gregory, and kauffman
Article 24
659
considered the right to education a socio-economic right,12 due to financial resources required for its realization as well as its social value,13 based on shared communal benefits14 that render it a semi-public good.15 Thus, article 26(1) of the UDHR recognizes that ‘[e]veryone has the right to education’, and set out that ‘[e]ducation shall be free, at least in the elementary and fundamental stages’ and that ‘[e]lementary education shall be compulsory’. Article 13(1) of the ICESCR, echoing article 26 of the Universal Declaration, sanctioned an individual’s education right on the basis of human flourishing and civic grounds: 1. The States Parties . . . recognize the right of everyone to education. They agree that education shall be directed to the full development of the human personality and the sense of its dignity, and shall strengthen the respect for human rights and fundamental freedoms. They further agree that education shall enable all persons to participate effectively in a free society, promote understanding, tolerance and friendship . . .16
Securing the right to education for PWD necessarily entails not just a formal right and equality of opportunity but also the creation of new, high quality, substantive educational opportunities, ideally linked to external criteria for measuring the functional social and economic attainment of PWD. Article 23(2) and (3) of the CRC explicitly recognized both the economic dimension of the right to education and the need for extra and appropriate care to achieve access and meaningful educational opportunities (according to needs) for children with disabilities: 2. States Parties recognize the right of the disabled child to special care and shall encourage and ensure the extension, subject to available resources, to the eligible child and those responsible for his or her care, of assistance for which application is made and which is appropriate to the child’s condition and to the circumstances of the parents or others caring for the child. 3. Recognizing the special needs of a disabled child, assistance extended in accordance with paragraph 2 of the present article shall be provided free of charge, whenever possible, taking into account the financial resources of the parents or others caring for the child, and shall be designed to ensure that the disabled child has effective access to and receives education, training, health care services, rehabilitation services, preparation for employment and recreation opportunities in a manner conducive to the child’s achieving the fullest possible social integration and individual development, including his or her cultural and spiritual development. (emphasis added)17
Rule 6 on Education of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (‘SREOPD’ or Standard Rules) is an example of a socio- economic formulation of the right to education that denotes the positive actions governments should take to secure this right for PWD (‘provision of interpreter and other appropriate support services’, ‘[a]dequate accessibility and support services, designed to meet the needs of persons with different disabilities’, ‘curriculum flexibility, addition and adaptation’, ‘quality materials, ongoing teacher training and support teachers’, 12 Yoram Rabin, ‘The Many Faces of the Right to Education’ in Daphne Barak-Erez and Aeyal Gross (eds), Exploring Social Rights (Hart 2007) 265–88; Randall Curren, ‘Education as a Social Right in a Diverse Society’ (2009) 43 Journal of Philosophy of Education 45–56. 13 Amartya Sen, Development as Freedom (OUP 1999). 14 Michael Walzer, Spheres of Justice (Basic Books 1983) 209, 226. 15 Although basic education is not considered a pure public good, it still has a strong public-good component, because it does not exist only for the benefit of students or parents but also for societal and civic development; see Sen (n 13). 16 17 ICESCR Art 13(1). CRC Art 23(2) and (3).
anastasiou, gregory, and kauffman
660
Education
‘[a]t a minimum, students with disabilities should be afforded the same portion of educational resources as students without disabilities’.18 The SREOPD, under an equalization of opportunities approach, favored the education of persons with disabilities in integrated settings but without excluding the possibility of special education settings where ‘the general school system does not yet adequately meet the needs of all persons with disabilities’.19 Although not a legally binding instrument, the UN SREOPD represented a moral and political commitment to take action to attain equalization of educational opportunities. Especially, Rule 6 provided a balance between the principle of equality (see ‘principle of equal primary, secondary and tertiary educational opportunities’20) and educational needs approach (ie ‘particular communication needs of deaf and deaf/blind persons’21). Specifically, the Standard Rules’ hybrid equal rights-educational needs approach was intended to ensure a system in which ‘the education of persons with disabilities is an integral part of the educational system’ and states parties ‘should aim for the gradual integration of special education services into mainstream education’; however, it was ‘acknowledged that in some instances special education may currently be considered to be the most appropriate form of education for some students with disabilities’.22 Before the Standard Rules, a few years earlier in March 1990 in Jomtien, Thailand, the World Conference on Education for All, led by the United Nations Educational, Scientific and Cultural Organization (UNESCO), adopted The World Declaration on Education for All (‘Jomtien Declaration’). Even though it was a non-binding policy tool, this was a major milestone in the international dialogue on how to meet the basic learning needs of various disadvantaged groups. Specifically, the Jomtien Declaration declared that universalizing access and promoting equity requires that ‘[t]he learning needs of the disabled demand special attention. Steps need to be taken to provide equal access to education to every category of disabled persons as an integral part of the education system’.23 There are two underlying views here: (a) the explicit recognition of special learning needs of PWD, (b) the need for, and movement towards an equal access to an integrated system of education. In June 1994 representatives of ninety-two governments and twenty-five international organizations, under the auspices of the UNESCO, adopted the Salamanca Statement and Framework for Action on Special Needs Education (‘Salamanca Statement’).24 The non- binding Salamanca Statement drew upon the Standard Rules and prioritized inclusion into general education for students with disabilities. It should be noted that the perspective of this statement, like that of Jomtien Declaration, was that special education needs refers ‘to all those children and youth whose needs arise from disabilities or learning difficulties’25 which can be viewed as an emergentist approach to disability.26 Whereas the Salamanca Statement called for inclusive education to be the rule, it considered separate special education settings, including special schools and special classes, ‘on a case-by- case basis where only education in a special school or establishment can be shown to The Standard Rules, UNGA A/RES/48/96 (20 December 1993) Rule 6 paras 2, 6(b), 6(c), and 8. 20 21 22 SREOPD Rule 6 para 8. ibid para 1. ibid para 9. ibid paras intro 8. 23 UNESCO, ‘World Declaration on Education For All: Meeting Basic Learning Needs’ (UNESCO, Jomtien, Thailand 1990) Art 3 para 5. 24 UNESCO, The Salamanca Statement and Framework for Action on Special Needs Education (Author 1994). 25 ibid para 3. 26 Dimitris Anastasiou and James M Kauffman, ‘The Social Model of Disability: Dichotomy between Impairment and Disability’ (2013) 38 Journal of Medicine and Philosophy 441–59. 18 19
anastasiou, gregory, and kauffman
Article 24
661
meet the needs of the individual child’.27 It suggested that ‘[i]nclusive schooling is the most effective means for building solidarity between children with special needs and their peers’28 but it acknowledged that special education settings should be considered in some cases where the needs of children are unmet. According to the Salamanca Statement, special support should follow the logic of a ‘continuum of support’ ‘ranging from minimal help in regular classrooms to additional learning support programmes within the school and extending, where necessary, to the provision of assistance from specialist teachers and external support staff’.29 Unlike previous international instruments and declarations that are influenced by a needs-based approach, CRPD article 24’s provisions operate predominantly within an anti-discrimination paradigm,30 prioritizing equal access and sameness of educational treatment for PWD.31 To be sure, both antidiscrimination and socio-economic justice impulses can be observed in the text of article 24, just as they were both present in the debates of the Ad Hoc Committee of the CRPD and of course are present in the larger disability rights movement. While both can be seen at work in article 24, we find that the antidiscrimination impulse seems to have overpowered the impulse toward socio- economic justice, notwithstanding the article’s notable inclusion of reasonable accommodations and individualized support. The blind spots and tradeoffs of both paradigms have been long chronicled: a focus on antidiscrimination/equality/full inclusion can give rise to the risk that, even with accommodations to a mainstream environment, some students will go un-or under-served and be forced to accept outcomes that are not consistent with their individual educational potentials.32 It can also serve as a refuge for political ideologies that simply want to 28 UNESCO, The Salamanca Statement, paras 18; see also paras 32, 72. ibid 8. ibid 72. 30 Bagenstos has provided a detailed and empirical critique of the antidiscrimination paradigm with regard to the Americans with Disabilities Act (ADA) of 1990 and the ADA Amendments Act of 2008. As he put it ‘antidiscrimination law—even when the notion of reasonable accommodation is tacked onto it—is simply too narrow a tool to get at the deep-rooted structural barriers that keep too many people with disabilities from participating fully in the community. To attack those barriers requires something more—something that looks like social welfare. To move beyond antidiscrimination to social welfare (as many disability rights activists are already doing) raises all the movement’s old concerns about paternalism and charity’ (p 149). But Bagenstos also notes that even an antidiscrimination/accommodation strategy can take slippery paternalistic paths. He further argues that an alternative is a renewed emphasis on universalist mechanisms as a key element of disability policy; a policy that embrace social welfare programs with an increased awareness of paternalistic paths; see Samuel R Bagenstos, Law and The Contradictions of the Disability Rights Movement (Yale University Press 2009) 148–50. Stein offers a divergent point of view, noting that antidiscrimination measures are important because they are necessary to alter social attitudes about people with disabilities; see Michael Ashley Stein, ‘Same Struggle, Different Difference: ADA Accommodations as Antidiscrimination’ (2004) 153 University of Pennsylvania Law Review 579–673. For further political analysis on the strengths, but also limits of the antidiscrimination paradigm: Dimitris Anastasiou and James M Kauffman, ‘Disability as Cultural Difference’ (2012) 33 Remedial and Special Education 139–49; Dimitris Anastasiou, James M Kauffman, and Domna Michail, ‘Disability in Multicultural Theory: Conceptual and Social Justice Issues’ (2016) 27 Journal of Disability Policy Studies 3–12; Jennifer L Erkulwater, Disability Rights and the American Social Safety Net (Cornell University Press 2006); Marta Russel, Beyond Ramps: Disability at the End of the Social Contract (Common Courage Press 1998). 31 An even stronger conceptualization of the equality as non-discrimination, by the European Union (EU) was discussed but eventually rejected. Specifically, the EU proposed that the principle of equal opportunity at the chapeau of the article ‘should be replaced by the stronger principle of non-discrimination,’ see Sixth Session of the Ad Hoc Committee, Daily Summary of Discussion (3 August 2005) available at: . 32 Anastasiou and Kauffman, ‘Disability as Cultural Difference’ (n 30). 27 29
anastasiou, gregory, and kauffman
662
Education
reduce cost by treating everyone the same.33 An emphasis on socio-economic justice/special needs education, on the other hand, can risk the possibility that some students will be inappropriately separated from the mainstream and placed in classes that do not address their social needs, while also minimizing their participation in school and maintaining paternalistic stereotypes about PWD. The most prudent approach from our point of view would be one that strives for an equilibrium between these approaches, maximizing inclusion, equality and full participation wherever appropriate and working to improve mainstream settings and alter social attitudes towards PWD; while also ensuring appropriate support and a continuum of services and placements that resists homogenization of PWD and strives to maximize educational and economic attainment for each individual person based on his/her particular educational needs. While the CRPD is a step forward in many respects and accomplishes some important goals for PWD, article 24 ultimately falls short of establishing such an equilibrium. The antidiscrimination impulse seems to unbalance article 24, leaving open what we see as some very concerning risks for PWD. This anti-discrimination approach to the right to education entails a focus on making educational opportunities available and accessible to PWD on an equal basis with persons without disabilities. Indeed, availability and accessibility are critically important;34 they have been identified as two of four key dimensions of the right to receive education,35 and generally speaking constitute the core of the right to education under international human rights law.36 Decoupled from the right to education’s other socio-economic dimensions, however, availability and accessibility are insufficient on their own to meaningfully secure this right for PWD.37 Relatedly, article 24’s emphasis on anti-discrimination can make it easier to minimize the wide variation in types and severity of special education needs of PWD. Unlike the SREOPD, mentioned above, and the Salamanca Statement, that were at least in part based on an educational needs approach, the Ad Hoc Committee of the CRPD, after much debate, eventually adopted a more idealized perspective on the education of PWD that, in our view, risks homogenizing PWD by emphasizing sameness of treatment. Such an approach deemphasizes in-depth consideration of individuals’ particular educational needs, at least insofar as these needs are too complex to be addressed through accommodations alone, and can divert attention from questions about educational quality and
33 James M Kauffman, ‘The Regular Education Initiative as Reagan-Bush Education Policy: A Trickle-Down Theory of Education of the Hard-to-Teach’ (1989) 23 The Journal of Special Education 256–78; Dimitris Anastasiou and James M Kauffman, ‘When Special Education Goes to the Marketplace: The Case of Vouchers’ (2009) 17 Exceptionality 205–22. 34 See further analysis on the four dimensions (availability, accessibility, acceptability, and adaptability) of the right to education by the UN Committee on Economic, Social and Cultural Rights (CESCR) ‘General Comment No 13’ (1999) UN Doc CESCR E/C 12/1999/10 para 6; CRPD Committee, ‘General Comment No 4’ (n 5) paras 20, 21, 23, 24, 25. Acceptability refers to the form and substance of education, including curricula and teaching methods that may include affirmative action measures. Adaptability refers to a flexible and responsive education to the needs of students. The CRPD Committee relates accessibility and adaptability to Universal Design for Learning. Anastasiou, Kauffman, and Di Nuovo (n 4) have linked the acceptability and adaptability dimensions of education to the right to quality education. 35 These four dimensions are part of the 4-As Framework for conceptualizing the right to education suggested by Katarina Tomasevski, see UNCHR, ‘Preliminary Report of the Special Rapporteur on the Right to Education’ (1999) UN Doc E/CN4/14999/49 paras 51–74. 36 CESCR ‘General Comment No 13’ (n 34) para 6. 37 Anastasiou and Keller, ‘Cross-National Differences in Special Education Coverage’ (n 4); WHO, World Report on Disability (n 4).
anastasiou, gregory, and kauffman
Article 24
663
appropriateness, particularly as regards classroom placements and specialized instructional approaches, which are integrally important for ensuring that educational opportunities truly support PWD to develop their full unique and individual human potentials.38 Taken together, the anti-discrimination paradigm’s dual focus on equal access and sameness of treatment result in article 24’s over-emphasis on inclusive education as the primary (or even the exclusive) vehicle for realizing the right to education for PWD. More specifically, article 24 tends to elevate the education of PWD in mainstream educational environments as its presumed substantive standard rather than the provision of quality instruction in an appropriate setting (including specialized settings) tailored to the particular educational needs of each individual student.39 Initially, the Ad Hoc Committee’s commentary seemed to recognize the need to balance inclusive aims with the reality that some PWD might benefit from receiving education in other (presumably more specialized) settings: The Committee noted . . . that inclusiveness was one of the main themes of the article (and of the convention more generally). There was a need to balance that with the other main theme of education options for persons with disabilities.40
However, it is noteworthy that the text of article 24 itself makes no explicit reference to ‘education options’, such as special schools, special classes, resource rooms, or other specialized settings, where PWD might receive educational services.41 Accordingly, article 24’s adoption of an anti-discrimination paradigm results in the elevation of inclusive education over other options and redirects resources from special education settings to general education settings. In the CRPD Committee’s words: ‘The Committee urges States parties to achieve a transfer of resources from segregated to inclusive environments. States parties should develop a funding model that allocates resources and incentives for inclusive educational environments to provide the necessary support to persons with disabilities.’42 In addition, there are also several recommendations from the CRPD Committee about the reallocation of financial resources.43 A second issue is that article 24 fails to recognize explicitly the full spectrum of educational needs associated with disabilities. The CRPD’s description of ‘persons with disabilities’ does include ‘those with long-term physical, mental, intellectual or sensory impairments’.44 Limiting the description in this way and avoiding an official definition
38 As discussed below, article 24 provides for consideration of individual’s particular educational needs through the provision of ‘reasonable accommodation’ and/or ‘effective individualized support measures;’ however, by requiring reasonable accommodation to be provided in an inclusive setting, it restricts the range of options that can be considered by educators. 39 James M Kauffman, Dimitris Anastasiou, Jeanmarie Badar, and Betty A Hallenbeck, ‘Becoming Your Own Worst Enemy: Converging Paths’ in Chris Boyle, Sofia Mavropoulou, Joanna Anderson, and Angela Page (eds), Inclusive Education: Global Issues & Controversies (SENSE 2018). 40 Sixth Session, Report of the Ad Hoc Committee UN Doc A/60/266 (August 2005). 41 While some have argued that the phrase ‘environments that maximize academic and social development’ used in sub-paragraphs 2(e) and 3(c) was included by the Committee to refer to specialized learning environments, the meaning and function of this phrase is ambiguous. 42 CRPD Committee, ‘General Comment No 4’ (n 5) para 68. 43 eg ‘the Committee recommends that the State party reallocate resources from the special education system to promote the inclusive education in mainstream schools, so as to ensure that more children with disabilities can attend mainstream education’. In CRPD Committee, ‘Concluding Observations on the Initial Report of China’ CRPD/C/CHN/CO/1 (15 October 2012) para 36; see also CRPD Committee, ‘Concluding Observations on the Initial Report of Qatar’ CRPD/C/QAT/CO/1 (2 October 2015) para 44. 44 CRPD Art 1. While not articulating a definition of disability, the second paragraph of Art 1 describes in a general way the holders of the rights set out by the CRPD. Schulze referred to this clause as a ‘non-definition’ of disability that provides an ‘open description of disability’. At one stage of negotiations, drafters considered
anastasiou, gregory, and kauffman
664
Education
of disability was, in part, intended by drafters to resist the medical model of disability that has tended to emphasize categorization and limitations, devaluing PWD, and paternalistically excluding them from participating in mainstream culture.45 While as a general matter, and with regard to other social institutions, we agree with this approach, we do wish to point out some consequences that are particular to the educational setting and render the CRPD’s description suboptimal for several reasons.46 Namely, there are particular educational needs and evidence-based methodologies associated with certain impairments not obviously covered by the convention’s description. Most notably, the educational needs of individuals with learning disabilities, with autism spectrum disorders, with emotional disabilities, and with developmental delays are not clearly signalled by the four broad categories enumerated in the description.47 By failing to flesh out for educational purposes the broad description of PWD contained in the convention’s preamble, article 24 missed an important opportunity to improve educational outcomes for all PWD, particularly in many developing countries,48 by heightening the visibility of educational needs associated with these impairments.49 In addition, while the use of
including disability in the definitions outlined in article 2, but disagreements among negotiators made this not feasible; see Marianne Schulze, Understanding the UN Convention on the Rights of Persons with Disabilities (3rd edn, Handicap International 2010) 27, 35. 45 Dimitris Anastasiou and James M Kauffman ‘A Social Constructionist Approach to Disability: Implications for Special Education’ (2011) 77 Exceptional Children 367–84; Tom Shakespeare, Disability Rights and Wrongs (Routledge 2006); Michael Ashley Stein, ‘Disability Human Rights’ (2007) 95 California Law Review 75–121. 46 The International Disability Caucus (IDC) proposed a descriptive and comprehensive definition of persons with disabilities, as follows: ‘A person with a disability is an individual whose ability to lead an inclusive life in the community of his/her own choice is limited by the separate or concomitant impact of physical, economic, social and cultural environments and/or personal factors that interact with physical, sensory, psychosocial, neurological, medical, intellectual or other conditions that may be permanent, temporary, intermittent or imputed. If a definition of a person with a disability does not exist in a country, the definition in this convention shall be applied and any definition of disability that is applied in their countries’ courts of law shall be at least as inclusive and broadly based as the definition contained in this convention’. While IDC was opposed to the idea of a definition of a disability, it found it meaningful to define ‘who has the right to be protected by this convention’; see IDC, ‘Chairman’s Text as Amended by the International Disability Caucus’, available at: . However, several countries’ delegates and the European Union opposed a clear-cut and operational definition of ‘persons with disabilities’ in the negotiations of the drafting process. From a political perspective, the resulting description of persons with disabilities has been helpful, on the one hand, by making it possible for the CRPD to be signed and ratified by many countries in record time. On the other hand, it does not clearly designate new recipients of the convention’s protections, and provides no obligations for the States Parties to educate populations of students with disabilities who remain un-or under-served in many (particularly developing) countries, specifically those with psychosocial or mental conditions. 47 Even in an important interpretive text of about 10,700 words, the CRPD Committee refers only once to persons on the autism spectrum and only twice to persons with communication impairments when discussing appropriate provisions for PWD, see the CRPD Committee, ‘General Comment No 4’ (n 5) paras 34, 48. Moreover, the CRPD does not define what constitutes an impairment. In contrast, the Americans with Disabilities Act (ADA) defines an impairment as something that ‘substantially limits one or more major life activities’, which include but are not limited to ‘caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working’ and also include ‘major bodily functions’, such as ‘functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions’; 42 USC § 12102. 48 Anastasiou and Keller, ‘Cross-national Differences in Special Education’ (n 4); Ametepee and Anastasiou (n 4); also, a multi-country survey supported by WHO indicated that ‘between 35% and 50% of people with serious mental disorders in developed countries, and between 76% and 85% in developing countries, received no treatment in the year before the study’ see WHO (n 4) 62. 49 In contrast, the US Individuals with Disabilities Education Act (IDEA) defines a ‘child with a disability’ to mean a child with ‘mental retardation, hearing impairments (including deafness) speech or language
anastasiou, gregory, and kauffman
Article 24
665
the modifier ‘long-term’ seemed initially to narrow the application of the description, increasing the likelihood that certain groups of students, particularly young children and those with episodic conditions, may remain un-or under-served,50 the CRPD Committee has subsequently provided a satisfactory clarification that persons with disabilities are not limited to those who have long-term impairments.51 Furthermore, in the general context of the convention’s broad description of disability, article 24 is particularly problematic because it controversially contains two paragraphs that specifically highlight measures addressing certain educational needs of persons with sensory disabilities and leave open the possibility that they, unlike students with other disabilities, could be educated in specialized settings. This explicit acknowledgement and special treatment of sensory disabilities, in the context of an instrument that is largely silent about certain other types of disabilities, has the effect of elevating the visibility of some disabilities (and their associated educational needs) over others. Relatedly, article 24 does not recognize an educational distinction between people facing body-related disabilities and those facing mind-related disabilities.52 The consequences of this are particularly salient due to its reliance on an anti-discrimination paradigm. A focus on equality of access may make sense where the barriers to educational attainment for PWD are largely physical (ie for persons with body-related disabilities, including physical, some sensory, and some health-related disabilities). However, where the barriers to educational attainment are more invisible and deeply intertwined with the neural architecture of learning (ie for persons with mind-related disabilities, including severe intellectual disabilities, low-functioning autism, severe communication disorders, severe psychosocial disorders, learning disabilities, diagnoses related to symptoms of childhood trauma, and some chronic illnesses) meaningful educational opportunity will likely require much more than simply opening up the schoolhouse doors.53 Article 24’s failure both to recognize the full spectrum of disability-related educational needs and to
impairments, visual impairments (including blindness) serious emotional disturbance, . . . orthopedic impairments, autism, brain injury, other health impairments, or specific learning disabilities’; 20 USC § 1401 (3)(A)(i). 50 eg the requirement of a ‘long-term’ impairment would seem to relieve states parties of the obligation to provide for the educational needs of children ages 0 to 3, as the United States does in Part C of the IDEA, see 20 USC § 1431 et seq. Further, the Americans with Disabilities Act addresses the variable of an impairment’s duration in a more straightforward way, defining and excluding from coverage a ‘transitory impairment,’ which is ‘an impairment with an actual or expected duration of 6 months or less’. Notwithstanding this limitation, the Act also makes clear that ‘the definition of disability . . . shall be construed in favor of broad coverage’ and explicitly provides that ‘an impairment that is episodic or in remission is [covered] if it would substantially limit a major life activity when active’, see 42 USC § 12102. 51 Specifically, the CRPD Committee highlighted that it ‘considers that, under article 1 of the Convention, persons with disabilities include, but are not limited to, those who have long-term physical, mental, intellectual or sensory impairments which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others’; CRPD Committee, ‘Communication No 10/2013: Decision Adopted by the Committee at its Twelfth Session’ CRPD/C/12/D/10/2013 (28 October 2014). 52 The fact that the CRPD does not make any distinction between intellectual disabilities and other forms of disabilities is also discussed by Andreas Dimopoulos, Issues in Human Rights Protection of Intellectually Disabled Persons (Ashgate 2010). 53 Cole et al, Helping Traumatized Children Learn, Vol 1 (Massachusetts Advocates for Children 2005). In the discussions on the Draft General Comment No 4 by the CRPD Committee, a disability NGO (All India Confederation of the Blind) noted that ‘a segregation of the worst type also occurs in poorly run inclusive education programmes’, available at: .
anastasiou, gregory, and kauffman
666
Education
draw an educational distinction between body-and mind-related disabilities risks an uneven distribution of educational opportunity and socio-economic justice among PWD.
2. Travaux Préparatoires The drafting history and discussions from the travaux préparatoires (preparatory works) constitute a supplementary means of clarifying key issues related to article 24. The Ad Hoc Committee was established by the United Nations General Assembly (UNGA) on 19 December 2001 (resolution 56/168), based on a proposal by Mexico, with the task of considering proposals for a convention.54 Remarkably, at the first session of the Ad Hoc Committee (29 July–9 August 2002), Mexico submitted an entire working draft convention, including thirty-one articles for consideration.55 In this working paper, draft article 12 referred to education and recognized that PWD have ‘the right to receive an education of quality . . . under conditions of equality’ (para 1), and that ‘States Parties shall guarantee the presence of other methods of quality teaching . . . solely for persons with disabilities who choose to enter another educational system such as integrated, special, and open schools . . .’. (para 3).56 At the second session (16–27 June 2003), several issues regarding the nature of the Convention were raised, including: (a) the typology of a convention on the rights of persons with disabilities; (b) the principle of non-discrimination and equality from a disability perspective; and (c) approaches to definitions of disability. Mexico’s initial draft article on education was not discussed, because during its second session the Ad Hoc Committee decided to establish a Working Group with the aim of preparing a draft text of a convention, which would serve as the basis for negotiation by member states and observers including the United Nations System (ie UNESCO), non-governmental organizations (‘NGOs’) and disabled persons’ organizations (‘DPOs’), national human rights institutions, and independent experts. It was the Chair of the Ad Hoc Committee who introduced the first draft of what would become article 24 on 15 December 2003 (‘Chair’s draft’). In the Chair’s draft, article 24 was entitled Right to education and drew upon previous UN treaties, especially the CRC57 and ICESCR,58 as well as on the non-binding instrument of Standard Rules on the Equalization of Opportunities for Persons with Disabilities (SREOPD Rule 6). Paragraph 2 and 3 of the Chair’s draft recognized ‘the right of all children with disabilities to inclusive education’ but also the need for ‘special and alternative forms of learning’ in some cases.59 The final draft article on education of the Working Group Report (27 January 2004), enumerated article 17, which was given the title ‘education’. This draft had the form of the final article 24 of the CRPD, but it deviated from its later content. Specifically, with regard to the major issues, there were three major differences: (a) one paragraph in the 54 Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities, UNGA A/RES/56/168 (26 February 2002). 55 Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities: Working Paper by Mexico, 2002 UN Doc A/AC.265/WP 1. 56 57 58 ibid. CRC Arts 28, 29. ICESCR Arts 13, 14. 59 Chair’s Draft Elements of a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities, available at: (15 December 2003).
anastasiou, gregory, and kauffman
Article 24
667
Working Group draft explicitly referred to special and alternative forms of learning, (b) reference was made to free and informed choice between general and special systems, and (c) there was explicit reference to Individualized Education Programs (IEPs) linked to the best interests of the child. It should also be noted that this Working Group draft prioritized inclusive education (paragraph 2) and used both the phrases ‘persons with disabilities’ and ‘child/children with disabilities’. Specifically, it read as follows: Article 17: Education 1. States Parties recognize the right of all persons with disabilities to education. With a view to achieving this right progressively and on the basis of equal opportunity, the education of children with disabilities shall be directed to: (a) The full development of the human potential and sense of dignity and self-worth, and the strengthening of respect for human rights, fundamental freedoms and human diversity; . . . (d) Taking into account the best interests of the child, in particular by individualizing education plans. 2. In realizing this right, States Parties shall ensure: . . . (c) That no child with disabilities is excluded from free and compulsory primary education on account of their disability. 3. States Parties shall ensure that where the general education system does not adequately meet the needs of persons with disabilities special and alternative forms of learning should be made available. Any such special and alternative forms of learning should: (a) Reflect the same standards and objectives provided in the general education system; (b) Be provided in such a manner as to allow children with disabilities to participate in the general education system to the maximum extent possible; (c) Allow a free and informed choice between general and special systems; (d) In no way limit the duty of States Parties to continue to strive to meet the needs of students with disabilities in the general education system . . .60 (emphasis added)
This Working Group’s draft was the first draft article on education that formed the basis for further discussions. It became one of the most debated articles during all the following stages of the negotiations (ie the third through the eighth session of the Ad Hoc Committee). It is noted here that the great bulk of the discussions, including comments, proposals, revisions and amendments on article 24, was undertaken during the third, the sixth, the seventh and the eighth session of the Ad Hoc Committee. At the third session (24 May–4 June 2004), many comments and proposals made by the members of the Ad Hoc Committee to the draft text presented by the Working Group were considered. In the Compilation of proposed revisions and amendments, a split between the member states with regard to ‘specialist education services’ was highlighted: Different approaches were also identified with respect to setting out the relationship between the provision of specialist education services and the general education system. Some members considered that education of children with disabilities in the general education system should be the rule, and the provision of specialist education services the exception. Others thought that specialist education services should be provided not only where the general education system was inadequate,
60 Report of the Working Group to the Ad Hoc Committee UN Doc A/AC265/2004/WG 1 Art 17 (27 January 2004).
anastasiou, gregory, and kauffman
668
Education
but should rather be made available at all times without a presumption that one approach was more desirable than the other.61 (emphasis added)
The sixth session (1–12 August 2005) was probably the most important session of the Ad Hoc Committee in the evolution of article 24 to its current form, concerning the highly controversial issues of special education and ‘the right to choose’. At the end of the sixth session, after the consolidation of proposals submitted by Rosemary Kayess, an Australian delegate who acted as a facilitator to the negotiations on article 24 education, the wording was closer to the final form of article 24, and a reference to special education was weaker. The Facilitator’s text read as follows: (d) persons with disabilities receive the support required, within the general education system, to facilitate their effective education. In exceptional circumstances where the general education system can not adequately meet the support needs of persons with disabilities, States Parties shall ensure that effective alternative support measures are provided, consistent with the goal of full inclusion.62 (emphasis added)
Nonetheless, the official Report by the Chairman (Report of the Ad Hoc Committee on its Sixth Session; 17 August 2005) recognized that there was a need for educational options: ‘inclusiveness was one of the main themes of the article (and of the convention more generally). There was a need to balance that with the other main theme of education options for persons with disabilities.’63 More importantly, paragraph 1 referred to alternative forms of education as an exception to the rule (see special education) but bearing in mind the goal of full inclusion. Specifically, the text read as follows: 1. States Parties recognize the right of all persons with disabilities to education with a view to achieving this right [progressively and] on the basis of equal opportunity. States Parties commit themselves to the goal of inclusiveness of their general education systems. Where exceptionally the general education system does not adequately meet the needs of persons with disabilities, States Parties shall take appropriate measures to ensure [quality/effective] alternative forms of education, bearing in mind the goal of full inclusion.64 (emphasis added)
In the same Chairman’s Report in paragraph 2(a), corresponding to the final paragraph 2(b) of article 24, there was also an alternative phrase into a square bracket that implies special education (to the extent possible): 2. In realizing this right, States Parties shall ensure: (a) that all persons with disabilities [choose inclusive and accessible quality/effective education] [have access to quality/effective education in the general education system] [throughout their lives] [to the extent possible] in the communities in which they live (including access to early childhood and pre-school education);65 (emphasis added; alternative wording within brackets and parentheses)
61 Third Session of the Ad Hoc Committee, Compilation of Proposed Revisions and Amendments made by the Members of the Ad Hoc Committee to the Draft Text Presented by the Working Group as a Basis for Negotiations by Member States and Observers in the Ad Hoc Committee (updated 26 August 2004) fn 7, available at: . 62 Sixth Session, Consolidation of Proposals Submitted by the Facilitator, available at: . 63 Sixth Session, Report of the Ad Hoc Committee (n 40) para 30, available at: . 64 65 ibid para 36. ibid para 38.
anastasiou, gregory, and kauffman
Article 24
669
It was the Facilitator’s Text that formed the basis of negotiations during the final two sessions. The Chair’s Text of the New Zealand Ambassador Don MacKay, issued in October 2005, contained all the discussed articles during the negotiations. In respect to article 24, the Chair’s Text reflected the language of the Australian facilitator and Ad Hoc Committee Report on its sixth session (for further details, see also section 4.5.3 special education).66 At the beginning of the seventh session (16 January–3 February 2006), the Chair ‘appealed for focused comments and an avoidance of extensive changes, given that the “perfect is the enemy of the good” and the issues for this article are mostly technical rather than political in nature’.67 At the Report of the Ad Hoc Committee of its seventh session, part of the ‘exceptional’ language (in exceptional circumstances, to the extent possible) was replaced, after a proposal from Canada’s delegation (see 4.5.3).68 Nevertheless, in paragraph 2(d), corresponding to the final 2(e), there was an alternative phrase (‘[i]n those circumstances where the general education system cannot adequately meet’) that clearly implied the possibility of special education settings. The text in the Report of the seventh session read as follows: That persons with disabilities receive the support required, within the general education system, to facilitate their effective education. [In order to meet adequately] [In those circumstances where the general education system cannot adequately meet] the individual support needs of persons with disabilities, States Parties shall ensure that effective individualized support measures are provided in environments which maximize academic and social development, consistent with the goal of full inclusion.69
The wording of article 24 was subsequently shaped in nearly-final form at the Interim Report (1 September 2006) following the eighth session of the Ad Hoc Committee (14–25 August 2006).70 After the eighth session, in the four meetings of the Drafting Group (13 September–30 October 2006), minor linguistic edits (eg commas) were made. However, a subtle change appeared in paragraph 2(b): from the phrase ‘free primary and secondary education’ in the Interim Report (1 September 2006) to the final CRPD clause ‘free primary education and secondary education’ in the fourth and final text of the Drafting Group (30 October 2006)71 (see section 4.2). Throughout this chapter, we will make extensive reference to the work of the Ad Hoc Committee regarding the critical content of article 24 during its third through eighth sessions. The deliberations with respect to article 24 are resources that provide better insight on key issues and the politics around its formulation and articulation. These long- standing politics of education of PWD are further discussed in the next sessions. The drafting history and the relevant debates are important for understanding the meaning of key words or phrases in article 24 such as ‘inclusive education system’, ‘free primary education and secondary education’, ‘reasonable accommodation’, ‘individualized support 66 Rosemary Kayess and Jennifer Green, ‘Today’s Lesson is on Diversity’ in Peter Blanck and Eilionóir Flynn (eds), Routledge Handbook of Disability Law and Human Rights (Routledge 2016) 62–63. 67 ibid; Seventh Session of the Ad Hoc Committee, Daily Summary of Discussion (24 January 2006) available at: . 68 ibid; Seventh Session, Report of the Ad Hoc Committee UN Doc A/AC265/2006/213 (February 2006). 69 ibid. 70 Eighth Session, Interim report of the Ad Hoc Committee UN Doc A/AC265/2006/4 (1 September 2006) 18–20, available at: . 71 Drafting Group, available at: .
anastasiou, gregory, and kauffman
670
Education
measures’, ‘in environments that maximize academic and social development’, and ‘the goal of full inclusion’.72
3. Paragraph 1 (Chapeau): The Right of Persons with Disabilities to Education The opening sentence of paragraph 1 contains article 24’s express recognition of ‘the right of persons with disabilities to education’. This sentence specifically reiterates the right to education in article 26 UDHR,73 article 13 ICESCR,74 and article 28 CRC75 and sets out both the preferred means and the desired ends of education for PWD.76 In terms of the latter, paragraph 1 is appropriately (and even inspiringly) expansive in its vision of educational attainment for PWD, striving for nothing less than ‘the full development of human potential’, including development of the individual’s ‘sense of dignity and self-worth’, ‘personality, talents and creativity’, and ‘mental and physical abilities’—all ‘to their fullest potential’ and with a view to enabling PWD ‘to participate effectively in a free society’. By any account, this vision represents a marked step forward for PWD and would seem to satisfy a conception of education as a vehicle for securing socio-economic justice.77 Thorny questions arise, however, when one considers the means paragraph 1 employs for achieving these laudable ends. By announcing the intent of states parties to realize the right to education for PWD ‘without discrimination and on the basis of equal opportunity’, paragraph 1 initially situates the operationalization of article 24’s justice-oriented vision within an antidiscrimination paradigm.78 With this as its grounding presumption, paragraph 1 obligates parties to ensure the provision of two primary means for securing the right to education for PWD—‘an inclusive education system at all levels’ and, somewhat more amorphously, ‘lifelong learning’.79 Thus, at least with respect to the first means, paragraph
See also CRPD Committee ‘General Comment No 4’ (n 5). UDHR Art 26(1) (‘Everyone has the right to education’). 74 ICESCR Art 13(1) (‘the right of everyone to education’). 75 CRC art 28(1) (‘the right of the child to education . . . ’). 76 Gauthier de Beco, ‘The Right to Inclusive Education According to Article 24 of the UN Convention on the Rights of Persons with Disabilities: Background, Requirements and (Remaining) Questions’ (2014) 32 Netherlands Quarterly of Human Rights 263–87. 77 For further analysis see Anastasiou and Kauffman, ‘Disability as Cultural Difference’ (n 30); Anastasiou, Kauffman, and Michail, ‘Disability in Multicultural Theory’ (n 30). Based on Amartya Sen’s original capabilities approach, Anastasiou et al have analysed that ‘prioritizing identity politics at the expense of the politics of redistribution can have detrimental effects on the lives of people with disabilities, especially in a sociopolitical context characterized by the withdrawal of welfare services’ (2016 p 8). From a different point of view, Stein referring to the CRPD as a whole, not particularly to education, emphasizes different features. Specifically, he considers the CRPD as a basis for developing a ‘disability human rights paradigm’ by combining a soft version of the social model of disability and Martha Nussbaum’s version of the capabilities approach; see Stein, ‘Disability Human Rights’ (n 45). 78 Reasonable accommodations, effective individualized support and appropriate measures appear later in article 24’s text and complicate this picture. In our subsequent analysis, we question whether an antidiscrimination orientation, tempered by these provisions, is capable of maximizing socio-economic justice for PWD. 79 Tonette S Rocco and Sandra L Fornes, ‘Perspectives on Disability in Adult and Continuing Education’ in Carol E Kasworm, Amy D Rose, and Jovita M Ross-Gordon (eds), The Handbook of Adult and Continuing Education (Sage 2010) 379–88. 72 73
anastasiou, gregory, and kauffman
Article 24
671
1 frames the right to education primarily as an issue of inclusion and introduces the phrase ‘inclusive education system’ as a key concept. Notably, however, this concept of inclusive education lacks explicit definition in article 24—and in the CRPD more generally—leaving its meaning open to interpretation, as the Russian Federation, for example, emphasized at the discussions of the seventh session of the Ad Hoc Committee.80 Most educators use this term to refer to the placement of students with disabilities in mainstream or general education classrooms for the duration of the school day or a significant portion of it.81 Within this general meaning, the term is sometimes employed to denote not only a student’s placement but also the specialized, individualized supports and services implicitly necessary to allow a student to make meaningful educational progress in a mainstream placement—we might call this the robust version of inclusion.82 Other times the term is used to refer to placement alone and merely connotes access to a mainstream setting without necessarily assuming the provision of any additional supports or services—we might call this the superficial version. Determining where article 24 locates itself along the continuum between robust and superficial conceptions of inclusive education is crucial for analysing the scope of the article’s right to education for PWD. As we shall see, clues to the article’s meaning are somewhat ambiguous, inviting different interpretations.83 Inclusion-like policies help integrate disadvantaged students into general education, itself an important and desirable goal. Examples of such policies can include physical integration of a student with disabilities into a general education classroom, Universal Design for Learning (‘UDL’), and differentiated instruction. These are each helpful policies for PWD and should be encouraged; however, they should be distinguished from what we would consider more robust inclusion policies.84 For legislation, adoption, enforcement, and policy monitoring purposes, the more robust inclusion policies—those that embrace strategies based on intensive and individualized instruction; support for the professional autonomy of specially trained teachers, such as co-teaching; and peer-assisted strategies—should also be encouraged. Limiting the range of acceptable inclusion policies is likely to promote
80 ‘The Russian Federation . . . expressed concern at the reference to “inclusive education” in the chapeau. Inclusive education is “general education, universal education and the inclusive universality is a characteristic of the education system as a whole.” If colleagues speak of some special system of inclusive education as being an independent system, that would mean a different approach to this question. It would mean that “inclusive” would not be a quality of education, but rather a structural aspect of the system, and therefore clarity is needed regarding this phrase.’ See Seventh Session of the Ad Hoc Committee, Daily Summary (24 January 2006), available at: . 81 Oberti v Board of Education of the Borough of Clementon School District, 995 F 2d 1204 (3d Cir 1993); see also Yael Cannon, Michael Gregory, and Julie Waterstone, ‘A Solution Hiding in Plain Sight: Special Education and Better Outcomes for Students with Social, Emotional, and Behavioral Challenges’ (2013) 41 Fordham Urban Law Journal 403–97; Douglas Fuchs and Lynn S Fuchs, ‘Competing Visions for Educating Students with Disabilities: Inclusion Versus Full Inclusion’ (1998) 74 Childhood Education 309–16; Peter Imray and Andrew Colley, Inclusion is Dead: Long Live Inclusion (Routledge 2017). 82 Ametepee and Anastasiou (n 4); James M Kauffman and Jeanmarie Badar, ‘Instruction, not Inclusion, Should Be the Central Issue in Special Education: An Alternative View from the USA’ (2014) 17 Journal of International Special Needs Education 13–20. 83 Some policy makers have stated that there is nothing wrong when inclusion takes on different meanings in different contexts eg Matsuura, the former Director-General of UNESCO (1999–2009) argued that inclusive education in different regions can entail a variety of policies and approaches for teaching all disadvantaged students, not only those with disabilities; see Koichiro Matsuura, ‘Foreword’ (2008) 38 Prospects 1–3. Such open-ended interpretations are unlikely to contribute to a common, universal language concerning the right to education. 84 Ametepee and Anastasiou (n 4) 151.
anastasiou, gregory, and kauffman
672
Education
an uneven distribution of educational opportunity among PWD.85 Along these lines, UNICEF (2014) has emphasized the need ‘to define better goals to guarantee that progress can be measured and monitor progress toward the policies and laws in a country’.86 In some developing countries the term inclusive education has been used in the superficial sense of inclusion, in other words as a synonym for placement alone.87 A typical example is China’s initiative in the 1990s (in collaboration with UNICEF) known as Learning in Regular Classrooms (LRC) or Suiban Jiudu.88 The purported main goal of LRC was to increase school enrollment and retention of children with disabilities in schools in impoverished areas. Though highly criticized, LRC has been interpreted by some scholars as inclusive education because, as its name suggests, the idea was to place students in general education settings.89 While paragraph 1 contains few direct clues to the article’s conception of inclusive education—subsequent paragraphs elaborate further, as we shall see—three important observations can be made about how the paragraph frames this central concept. First, by anchoring inclusive education within an anti-discrimination paradigm, paragraph 1 tends to constrain the term’s possible meaning and positions it closer to the ‘superficial’ end of the continuum. Anti-discrimination projects have increasingly been construed to prohibit or, at least, to de-emphasize the kind of differential treatment associated with the more ‘robust’ version of inclusion.90 As we will discuss, subsequent provisions in article 24 do provide for some level of differential treatment (eg accommodations, individualized supports); however, the emphasis on anti-discrimination makes it less clear whether the inclusive education system the article envisions would provide the full range of specialized instruction, services and professional staff necessary for truly robust inclusive education. A second important aspect of paragraph 1’s framing of inclusive education is what it actually demands of the system that is its chosen vehicle for realizing the article’s expansive vision for PWD: States parties ‘shall ensure’ that this system is ‘directed to’ the ‘full development’ of PWD’s ‘human potential’. This language stipulates the requisite
Kauffman, Anastasiou, Badar, Travers, and Wiley (n 4); Imray and Colley (n 81). UNICEF, ‘African leaders commit to the rights of people with disabilities’ (10 February 2014), available at: . 87 Ametepee and Anastasiou (n 4). 88 Anastasiou and Keller, ‘International Differences in Provision’ (n 4) 781. 89 See Meng Deng and Genevieve Manset, ‘Analysis of the ‘Learning in Regular Classrooms’ Movement in China’ (2000) 38 Mental Retardation 124–30; as they put it: ‘Learning in Regular Classrooms provides only the option of general class placement as opposed to a continuum of services. In this way, the approach more closely reflects full inclusion than mainstreaming.’ (emphasis added) (p 125). However, Pang and Richey considered that this was a rather Westernized interpretation of LRC/Suiban Jiudu. Specifically, they noted: ‘It is not a formally titled inclusion and children’s with disabilities special needs are not addressed. No specialists or personnel are available in Suiban Jiudu. Nor educators in the Suiban Jiudu class are cognizant of basic and necessary knowledge about the children’s disabilities.’ (p 82) ‘In some Learning in Regular Classrooms schools, students with disabilities have been observed sitting alone, isolated from classroom activities, or have even remained at home despite the fact that their names are on the registration list.’ (p 85); see Yanhui Pang and Dean Richey ‘The Development of Special Education in China’ (2006) 21 International Journal of Special Education 77–86. In addition, the Shadow Report to UN CRPD Committee by the IDA raised issues about whether the Chinese government really promoted an inclusive education system; IDA, Recommendations on China CRPD Committee, 8th Session, issue 22 and paras 32–34, available at: . 90 Parents Involved in Community Schools v Seattle School District No 1, 551 US 701 [2007]; Reva B Siegel, ‘Equality Talk: Antisubordination and Anticlassification Values in Constitutional Struggles over Brown’ (2004) 117 Harvard Law Review 1470–547. 85 86
anastasiou, gregory, and kauffman
Article 24
673
purposes and goals of the system, but it does not include any requirement that the system actually delivers on these purposes. It does not seem to contemplate any obligation that states parties would seek to verify the effectiveness of inclusive education for particular individuals. Nor does it hint at the (inherently) highly individualized nature of any such effort to assess educational outcomes, which would particularly be the case if such services were tailored to the unique needs of individual students. Third, in the phrase ‘inclusive education system’, a thorough understanding of the key word system is important. A system does not imply uniformity or homogeneity in all respects.91 This was emphasized by Thailand, the IDC and others during the travaux préparatoires. UNESCO commented ‘we also support the stance of Thailand indicating that inclusiveness does not mean supporting one model, but that the entire system be inclusive’.92 In general, there was the widespread impression among delegates of countries and disability organizations that the key word system imparts an openness to inclusive education, while at the same time emphasizing the intended goal for a more inclusive education. Furthermore, inclusiveness can constitute both a feature and a goal of an education system, but this does not necessarily mean that every school or unit (eg special class, resource room) should operate in the same way as a general class or adopt the same curriculum.93 Even the European Union, which strongly supported the phrase ‘consistent with the goal of full inclusion’, provided the following rationale: ‘The first sentence of the chapeau has been reworded to stress the issue of non-discrimination, to stress the goal of inclusiveness but to couch its exception so that it remains the ultimate goal.’94 The meaning of the key term system is also captured in a report issued by the World Health Organization (WHO) after the CRPD Convention was adopted.95 In an extensive report on barriers to and outcomes of education of PWD, the WHO made an appraisal of the ‘full inclusion’ goal, considering it unrealistic, and suggested a more flexible approach to placement.96 Taken together, these features of paragraph 1 suggest a more superficial conception of inclusive education, one that highlights placement (eg access to a mainstream setting) and deemphasizes individualized services and supports. The superficial conception Mario Bunge, Treatise on Basic Philosophy Vol 4: Ontology II: A World of Systems (Kluwer 1979) 186–244. Sixth Session of the Ad Hoc Committee, Background Documents of the CRPD, available at: . 93 Garry Hornby, ‘Inclusive Special Education: Development of a New Theory for the Education of Children with Special Educational Needs and Disabilities’ (2015) 42 British Journal of Special Education 234–56; Mary Warnock, ‘Special Educational Needs: A New Look’ in Lorella Terzi (ed), Special Educational Needs: A New Look (2nd edn, Continuum 2010); Kauffman, Anastasiou, Badar, Travers, and Wiley (n 4). 94 Sixth Session of the Ad Hoc Committee, Daily Summary of Discussion (3 August 2005), available at: . 95 WHO (n 4) 209–10. 96 ibid 210. Specifically, the WHO report states: ‘Inclusive education seeks to enable schools to serve all children in their communities. In practice, however, it is difficult to ensure the full inclusion of all children with disabilities, even though this is the ultimate goal. Countries vary widely in the numbers of children with disabilities who receive education in either mainstream or segregated settings, and no country has a fully inclusive system. A flexible approach to placement is important: in the United States of America, for example, the system aims to place children in the most integrated setting possible, while providing for more specialized placement where this is considered necessary. Educational needs must be assessed from the perspective of what is best for the individual and the available financial and human resources within the country context. Some disability advocates have made the case that it should be a matter of individual choice whether mainstream or segregated settings meet the needs of the child.’ 91 92
anastasiou, gregory, and kauffman
674
Education
of inclusion would seem more consistent with the paragraph’s focus on sameness of treatment for PWD and its lack of attention to accountability for individual outcomes. What surfaces quite plainly in paragraph 1, then, is the well-documented tension between inclusive education for PWD and high quality education for PWD.97 By no means mutually exclusive, inclusion and quality are nonetheless often pitted against each other in debates about education for PWD. While paragraph 1 outlines a vision for PWD that is consistent with what a high quality education would deliver, its method of implementation—an inclusive education system—may not, at least when narrowly framed, be aligned with achieving this vision for all PWD. Paragraph 1 establishes clearly article 24’s guarantee of the right to equal access to education for PWD but whether or not this right entails a high quality, appropriate education for PWD remains in question. Finally, in the period between May 2016 and December 2017, during the monitoring process, the CRPD Committee, in its Concluding Observations, has typically recommended that state parties (over twenty-five countries) pay attention to the links between article 24 and targets 4.5 (no discrimination in education) and 4.a (build and upgrade inclusive and safe schools) of the Sustainable Development Goals (SDGs) of 2015.98
4. Paragraph 2 The primary function of paragraph 2 is to operationalize article 24’s central concept of an inclusive education system. Sub-paragraphs (a) and (b) elaborate two important and related characteristics of such a system: non-exclusion and accessibility. The former section restrains states from excluding PWD from the general education system, including primary and secondary education, on the basis of disability; the latter requires states to provide PWD access to ‘an inclusive, quality, and free’ primary and secondary education ‘on an equal basis with others in the communities in which they live’. These provisions largely function as elaborations of paragraph 1’s anti-discrimination paradigm, emphasizing equal access and sameness of treatment over meaningful participation and individualized support, and serve to reinforce that paragraph’s arguably superficial framing of inclusion. In contrast, sub-paragraphs 2(c), (d), and (e) introduce some ambiguity into article 24 by swinging the pendulum back somewhat in the other direction. While earlier sections tend to insinuate a superficial conception of inclusion that could be construed to denote placement in a mainstream learning environment without more, these three sub- paragraphs seem to signal a slightly more robust conception that entails some support of individual students’ needs. As we will see, there are some omissions and ambiguities in these sections that arguably continue to constrain the degree of robustness actually guaranteed by article 24. Taken together these sub-paragraphs complicate article 24’s central guarantee of an inclusive education system, expanding that concept in some ways and potentially reinforcing its limitations in others.
97 See Martha L Minow, Making All the Difference: Inclusion, Exclusion, and American Law (Cornell University Press 1990) on the ‘dilemma of difference’ and how sameness of treatment does not necessarily mean fairness. 98 United Nations, ‘Transforming Our World: The 2030 Agenda for Sustainable Development’ UN Doc A/ RES/70/1 (21 October 2015).
anastasiou, gregory, and kauffman
Article 24
675
4.1 Paragraph 2(a): Non-Exclusion While, at first blush, non-exclusion is a welcome and necessary requirement for the education of PWD, it is important to probe this general idea and ask the question what counts as exclusion in article 24’s conceptualization. To the extent non-exclusion is construed to prohibit differential treatment for PWD that entails education in specialized classrooms or schools, this requirement is not a politically neutral one in that it may prejudice the educational attainment of PWD who benefit from receiving education in such settings. The scope of sub-paragraph 2(a)’s non-exclusion requirement ultimately hinges on the meaning of two important terms: ‘general education system’ and ‘on the basis of disability’. Neither term is explicitly defined, leaving the meaning of the requirement ambiguous. The first unanswered question is whether specialized educational settings are per se exclusionary or whether there are circumstances in which they are consistent with and can be operated as part of the ‘general education system’, such that they are considered non- exclusionary. One example of a regime that seems to take the latter course is the Individuals with Disabilities Education Act (‘IDEA’), the federal law that governs provision of primary and secondary education to PWD in the United States. American students with disabilities can legally receive—and public agencies are required to provide—education in a spectrum of settings, ranging from mainstream classrooms, to separate classrooms for part of the school day (‘resource rooms’) or for all of the school day (‘substantially separate classrooms’), to separate day schools (including privately operated schools), separate residential schools, and even hospitals or home-based settings.99 In the American context, it is not education of PWD alongside non-disabled peers that renders a setting part of the ‘general education system’. Rather, the IDEA outlines three requirements that we might consider a tacit set of indicia of non-exclusion from general education: 1) a student’s education is publicly funded; 2) it is under the ultimate supervision of government officials (even if privately administered); and 3) it conforms to the curricular standards that govern mainstream education.100 So long as these indicia are present, a student’s education is arguably provided as part of the US ‘general education system’, regardless of setting. What is not entirely apparent is whether such a system would be considered consistent with article 24’s non-exclusion requirement. Moreover, the declaration of the United Kingdom (UK) upon ratification of the CRPD in June 2009 with regard to article 24(2)(a) and (b) is relevant and reads as follows: The United Kingdom Government is committed to continuing to develop an inclusive system where parents of disabled children have increasing access to mainstream schools and staff, which have the capacity to meet the needs of disabled children. The General Education System in the United Kingdom includes mainstream, and special schools, which the UK Government understands is allowed under the Convention.101
99 See 34 CFR § 300.115 (requiring states to ensure that ‘a continuum of alternative placements is available to meet the needs of children with disabilities for special education and related services’). 100 See 20 USC § 1401 (9) (defining ‘Free Appropriate Public Education’—the IDEA’s central substantive guarantee—to mean inter alia ‘special education and related services that—(A) have been provided at public expense, under public supervision and direction, and without charge; [and that] (B) meet the standards of the State educational agency . . . )’. 101 Declaration of the United Kingdom (UK) upon Ratification of the CRPD, available at: .
anastasiou, gregory, and kauffman
676
Education
In addition to the physical setting in which a student receives education, a second important dimension of non-exclusion—and another open question in article 24—has to do with the rationale for determining a student’s setting. Placement made ‘on the basis of disability’ alone would seem rather clearly to constitute exclusion according to article 24’s anti-discrimination conception, even if the setting itself could otherwise be considered part of the general education system. Less clear is whether article 24 would contemplate specialized placement on the basis of special educational needs a meaningful distinction that could justify education of PWD in specialized settings given appropriate circumstances.102 Two quick examples will serve to highlight this distinction. First, in many Eastern European post-communist countries a long tradition of paternalistic defectology103 has contributed to the widespread practice of placing Roma students in specialized settings. Several cases before the European Court of Human Rights (ECtHR) document this practice, and in one particular ECtHR case, D H and Others v the Czech Republic, Roma students in the Czech Republic were deemed eligible for ‘special schools’ on the basis of a single diagnostic criterion (an IQ test) without taking account of language or cultural differences and/or their social-emotional or adaptive skills.104 Such a practice would seem to illustrate exclusion from the mainstream on the basis of disability alone (see also Horváth and Kiss v Hungary).105 A return to the American IDEA furnishes a distinguishing example. Disability alone is not sufficient even to trigger eligibility under the IDEA, much less to justify a specialized placement. Rather, eligibility requires a disability that impairs a student’s educational progress and occasions the need for special education and related services.106 Once this eligibility threshold is crossed, additional provisions ensure that educational decisions are not determined on the basis of disability alone. Each eligible student is provided with an Individualized Education Program, developed by an interdisciplinary team of professionals that determines services and placement on the basis of the student’s strengths, the parents’ concerns, evaluation results and the unique ‘academic, developmental, and functional needs of the child’.107 A reason that the American system tolerates placement of Warnock (n 93) 16; Imray and Colley (n 81). See Dimitris Anastasiou, Ralph Gardner III, and Domna Michail ‘Ethnicity and Exceptionality’ in James M Kauffman and Daniel P Hallahan (eds), Handbook of Special Education (1st edn, Routledge 2011) 745–58; Patrick Thornberry ‘Article 12’ in Mark Weller (ed), The Rights of Minorities: A Commentary on the European Framework Convention for the Protection of National Minorities (OUP 2005) 365–93. 104 D H and Others v the Czech Republic (ECtHR No 57325/00) 13 November 2007; see also Oršuš and Others v Croatia (ECtHR No 15766/03) 16 March 2010. 105 This practice also constitutes a particularly salient example of how discrimination on the basis of disability can interact with and serve as a pretext for discrimination on the basis of other identity characteristics, like race, ethnicity, culture, and religion. See eg Horváth and Kiss v Hungary (ECtHR No 11146/11) 29 January 2013 (finding a violation of Article 2, Protocol 1 [right to education] and Article 14 [discrimination] of the European Convention of Human Rights, on the ground of indirect ethnic discrimination, where two young Roma men were diagnosed as having ‘mild mental disability’ because of their scores on a single IQ test and, on that basis, were placed in a ‘remedial school’). Much of the reasoning in this case is similar to that in other Roma school segregation cases. 106 See 20 USC § 1401 (3) (defining ‘child with a disability’ to mean a child with one or more of several categories of impairment ‘who, by reason thereof, needs special education and related services’). Orthopedic impairments or chronic health problems are examples of disabilities that might not directly impact learning and that, therefore, would not trigger eligibility under IDEA and that might be addressed by accommodations in a mainstream setting (eg allocation of space or other arrangements) that are not considered special education. 107 20 USC § 1414 (d)(3)(A). 102 103
anastasiou, gregory, and kauffman
Article 24
677
students with disabilities in specialized settings is the assumption that decisions based on such a multiplicity of factors are less likely to manifest the kind of discriminatory animus present in the placement of Roma students described above—and, further, that it is the discriminatory animus, rather than the mere fact of differential treatment, that constitutes the injustice to PWD. Article 24’s text does not make clear whether its conception of non-exclusion is elastic enough to countenance placement of students in specialized settings on the basis of special education needs and therefore leaves open the possibility that states will create education systems that do not include such settings as options for PWD. An additional point about article 24’s treatment of non-exclusion that bears mentioning is the fact that it does not explicitly refer to subtler forms of exclusion of PWD, such as low school attendance, high drop-out rates, low completion rates, disproportionate application of punitive school discipline procedures, or physical and economic barriers.108 Even in nations that have long abolished formal exclusion of PWD from the general education system, these more insidious forms of exclusion remain a real and significant barrier to educational attainment and socio-economic justice for PWD.109 While nothing on its face (nor in the travaux préparatoires) suggests article 24 intends to allow these subtler forms of exclusion, its failure to reference their existence explicitly misses an important opportunity to render them visible and thereby contribute to their dismantling.110 One case relevant to the (physical) non-exclusion mandate is that of Çam v Turkey—the ECtHR has ruled that a blind person had suffered discriminatory treatment on account of her blindness, which constitutes a violation of article 14 (prohibition of discrimination) of the European Convention on Human Rights,111 in conjunction with the right to education (article 2 of Protocol No 1 to the European Convention). The Court found that ‘the applicant was denied, without any objective and reasonable justification, an opportunity to study in the Music Academy [attached to İstanbul Technical University], solely on account of her visual disability’ and ‘that the domestic authorities had at no stage considered the possibility that reasonable accommodation might have enabled her to be educated in that establishment’.112 The European Court, referring to article 2 of the CRPD, considered that ‘a reasonable accommodation helps to correct factual inequalities which are unjustified and therefore amount to discrimination’,113 and noted that ‘since 1976 the Music Academy has made no attempt to adapt its teaching methods in order to make them accessible to blind children’.114 Anastasiou and Keller, ‘International Differences in Provision’ (n 4); WHO (n 4). ibid; Anastasiou and Keller, ‘Cross- national Differences in Special Education’ (n 4); Anastasiou, Kauffman, and Di Nuovo (n 4). 110 By contrast, US domestic law attempts to address some of these problems in at least two important ways: 1) the IDEA contains special procedural safeguards designed to ensure that students with disabilities are not excluded from school on the basis of behaviours that are manifestations of their disabilities, see 20 USC § 1415 (k); and 2) the Every Student Succeeds Act (the latest reauthorization of the Elementary and Secondary Education Act of 1965) requires states to track graduation rates and standardized academic achievement test scores for historically underserved groups, including students with disabilities, as part of its accountability structure, see 20 USC §§ 6311 (c)(4)(a)(i)(I)(bb) and (b)(2)(B)(xi)(III). While these measures have certainly not eliminated subtle exclusion of students with disabilities, they have highlighted the visibility of the problem and provide some legal tools for addressing it. For data suggesting that schools subject to the aforementioned accountability requirements tend to educate more students with disabilities in regular education classrooms, see Jennifer Harr-Robins et al, ‘School Practices and Accountability for Students with Disabilities,’ US Dept of Educ (2015). 111 Formally, the Convention for the Protection of Human Rights and Fundamental Freedoms. 112 Case of Çam v Turkey (ECtHR Application no 51500/08; Judgment 23 May 2016) para 69. 113 114 ibid para 65. ibid para 68. 108 109
anastasiou, gregory, and kauffman
678
Education
Two landmark American cases that laid the groundwork for the approach taken by the IDEA described above are also relevant here. In Pennsylvania Association for Retarded Children (PARC) v Commonwealth, the plaintiffs sued the state of Pennsylvania challenging a state law that had been used to deny access to public education to certain students with intellectual disabilities who were deemed ‘uneducable and untrainable’.115 A consent decree found the excluded students entitled to an education and required the state to provide a ‘free, public program of education and training appropriate to the child’s capacity’, preferably in ‘a regular public school class’.116 In Mills Board of Education, seven students in the District of Columbia brought suit alleging that they had been ‘labeled as behavioural problems, mentally retarded, emotionally disturbed, or hyperactive’ and as a result had been ‘denied admission to the public schools, or excluded therefrom after admission’.117 The court ruled that the District’s exclusionary practices violated both local law and the US Constitution and held that ‘no child eligible for a publically supported education in the District of Columbia Public Schools shall be excluded from a regular public school assignment’ unless the child is provided ‘adequate alternative educational services’.118 Together, these seminal cases paved the way for the federal statute (IDEA) and helped to enshrine the principal of non-exclusion for PWD in American law.
4.2 Paragraph 2(b): Accessibility 4.2.1 Access to an Inclusive, Quality, and Free Primary Education and Secondary Education on an Equal Basis As with earlier sections, there are interpretive ambiguities with respect to sub-paragraph 2(b)’s requirement that states ensure the access of PWD to education. First, a fundamental question, particularly for developing countries, is whether access guarantees merely the availability of education or whether it guarantees full access in the sense of meaningful participation of PWD in the education system. The results of a global survey included in a 2007 report delivered by the UN Special Rapporteur on Disability highlight this tension as a possible explanation for the high drop-out rates among PWD in developing countries. Of 114 countries responding to the survey, 101 fared better in implementing measures with respect to availability of education than with respect to ensuring meaningful participation.119 Second, until recently, another source of ambiguity was whether the qualifiers quality and most importantly free, as the latter is more easily measured, attach only to ‘primary education’ or also to ‘secondary education’. We have already mentioned that there was a subtle change in the drafting groups after the Convention (see section 2: Travaux), which made the meaning more ambiguous with regard to access to free secondary education. Generally speaking, free secondary education for PWD is an important matter, as rough estimates— despite the lack of accurate data—show that 93 million children under the age of fourteen have a ‘moderate or severe disability’ and most of them are in developing countries.120
116 334 F Supp 1257, 1264 (E D Pa 1972) (quoting 24 Purd Stat Sec 13–1375). ibid 1260. 118 348 F Supp 866, 868 (D D C 1972). ibid 878. 119 Report of the Special Rapporteur on Disability of the Commission for Social Development, UN Doc E/CN 5/2007/4 (16 November 2006) para 34: ‘. . . at the same time, many countries . . . had made no specific provisions to make education accessible for children with disabilities. Thus, the real gap in the area of education lies between availability and accessibility’. 120 UNESCO, The Right to Education for Persons with Disabilities (Author 2015) 3. 115 117
anastasiou, gregory, and kauffman
Article 24
679
Contextualizing the difference in wording from the eighth session to the final text, article 13(2) of the ICESCR (adopted in 1966) does not exactly mandate free secondary education. Specifically, it stipulates that ‘[p]rimary education shall be compulsory and available free’121 but ‘[s]econdary education . . . shall be made generally available and accessible . . . and in particular by the progressive introduction of free education’.122 In the context of travaux during the Convention, it is noteworthy that the Report of the Ad Hoc Committee on its Sixth Session (17 August 2005), had acknowledged a concern whether the convention will create a new obligation to provide free secondary education or article 24’s wording will function as a mere non-discriminatory provision; that is, without important fiscal obligations. In its Chairman’s words: On subparagraph 2 (c), there was some support to add the word ‘secondary’. In doing so, the Committee noted that the reference, which now reads ‘free and compulsory primary or secondary education’, did not create any new obligation for States to provide free and compulsory secondary education. Rather, the provision is a non-discrimination one, and means that if a State did provide free and compulsory secondary education to the general population, then it should also be provided to persons with disabilities.123
In addition, the Seventh Session of the Ad Hoc Committee, the Chair underlined that the convention should: avoid creating a higher standard in this provision than in the ICESCR and the CRC, which do not require access to free secondary education in the communities in which a person with disabilities lives. He reiterated that the intent of the convention is not to create new rights but to ensure equal opportunity to exercise existing rights.124
Taking into consideration the Chair’s stance, the legislative intention was not to create a universal (new) right for a free secondary education, especially for PWD. For the same reason, the Chair suggested that the phrase ‘on an equal basis with others’ should accompany ‘the free secondary education’.125 The opposite stance was rather weak coming basically from a disabled persons’ organization, the Mental Disability Rights International.126 Thus, it is hard to say that the aforementioned reformulation in the Drafting Group was out of the spirit of the negotiations in the Ad Hoc Committee. In addition, Schulze (2009) noted that, taken together, paragraphs 2(a) ‘primary education, or from secondary education’ and 2(b), draw a distinction between primary and secondary education. This was justified on the grounds of the fact that there is a lack of free and compulsory education beyond the primary level in many member states.127 Fortunately, target 4.1 of the Sustainable Development Goals (SDGs) of 2015 explicitly refers to ‘free, equitable and quality primary and secondary education’ for all by 2030,128 which also extended the previous goal 2 to achieve universal primary schooling in the Millennium Development Goals (MDGs) of 2000.129 Even though both the SDGs 122 ICESCR Art 13(2a). ICESCR Art 13(2b). Sixth Session, Report of the Ad Hoc Committee (n 40) UN Doc A/60/266 (17 August 2005) para 37. 124 Seventh Session of the Ad Hoc Committee, Daily Summary of Discussion (24 January 2006), available at: . 125 126 ibid. ibid. 127 Schulze, Understanding the UN Convention on the Rights of Persons with Disabilities (2nd edn, Handicap International 2009) 92. 128 United Nations, ‘Transforming Our World: The 2030 Agenda for Sustainable Development’ (n 98). 129 United Nations, United Nations Millennium Declaration UN Doc A/RES/55/2 (18 September 2000). 121 123
anastasiou, gregory, and kauffman
680
Education
and MDGs lack enforceability with respect to the monitoring mechanisms set up by states, it is welcome that the CRPD Committee (2016), invoking target 4.1 of the SDGs, clarified that the adjectives ‘quality’ and ‘free’ refer to secondary education as well: In line with the 2030 Agenda for Sustainable Development, States parties must progressively adopt measures to ensure that all children, including children with disabilities, complete free, equitable and quality secondary education and to ensure equal access for all women and men with disabilities . . .130
However, it remains questionable how this potential new obligation to provide free secondary education for PWD, under the current and dominant interpretation, is effectively monitored, as there is a lack of accurate data for several developing countries, and the matter is not on the top of the CRPD Committee’s recommendations; in the period between 2016 and 2017, a notable exception is the recommendation to Uruguay to bear in mind the linkage between article 24 of the Convention and target 4.1 of the SDGs.131 We also need to clarify that ‘free’ secondary education does not mean compulsory. Moreover, the mandate for free secondary education can facilitate abolishment of school fees in both elementary and secondary education in some Sub-Saharan countries.132 But the clause ‘on an equal basis with others’, if it is strictly interpreted, may put limits to justiciability of the right, as it does not address the extra needs and costs that an impairment can impose on mobility of children with disabilities. Although the extra cost can be a matter of litigation, based on reasonable accommodation, the process to achieve target 4.1 of the SDGs will be rather slow in several developing countries. During the monitoring process, the CRPD Committee has expressed concerns about (a) the access of PWD to preschool and tertiary education;133 (b) gender disparities in access to education;134 (c) the low rate of school attendance of children with disabilities, especially of those in rural areas, minority students, and indigenous communities;135 (d) ‘affordable secondary education on the equal basis as others, as some of the public special schools do not provide education free of charge’;136 (e) high rates of illiteracy among older adults with disabilities and about opportunities to access vocational training and tertiary education;137 and (f ) the ongoing placement of Roma children in special
CRPD Committee, ‘General Comment No 4’ (n 5) para 29. CRPD Committee, ‘Concluding Observations on the Initial Report of Uruguay’ CRPD/C/URY/CO/ 1 (30 September 2016) para 52. 132 As of 2006, in Sub-Saharan Africa elementary education was really free in three countries: Mauritius, Sao Tomé, and Principe, and Seychelles in Anastasiou and Keller ‘International Differences in Provision’ (n 4) 778. 133 CRPD Committee, ‘Concluding Observations on the Initial Report of Armenia’ CRPD/C/ARM/CO/ 1 (8 May 2017) para 42(b). 134 CRPD Committee, ‘Concluding Observations on the Initial Report of Ethiopia’ CRPD/C/ETH/CO/ 1 (4 November 2016) paras 51, 52. 135 CRPD Committee, ‘Concluding Observations on the Initial Report of Armenia’ CRPD/C/ARM/CO/1 (8 May 2017) para 42(b); CRPD Committee, ‘Concluding Observations on the Initial Report of Guatemala’ CRPD/C/GTM/CO/1 (15 May 2017) para 59; CRPD Committee, ‘Concluding Observations on the Initial Report of Mexico’ CRPD/C/MEX/CO/1 (27 October 2014) para 48(b); CRPD Committee, ‘Concluding Observations on the Initial Report of Peru’ CRPD/C/PER/CO/1 (16 May 2012) para 48. 136 CRPD Committee, ‘Concluding Observations on the Initial Report of Lithuania’ CRPD/C/LTU/CO/ 1 (17 May 2016) para 45(c). 137 CRPD Committee, ‘Concluding Observations on the Initial Report of Qatar’ CRPD/C/QAT/CO/1 (2 October 2015) para 43; CRPD Committee, ‘Concluding Observations on the Initial Report of United Arab Emirates’ CRPD/C/ARE/CO/1 (3 October 2016) para 43(e). 130 131
anastasiou, gregory, and kauffman
Article 24
681
schools.138 In several cases, it has noted that separate special education settings remain virtually the only option available to students with disabilities.139 Even in highly developed countries, reports shows ‘that schools can refuse admission to certain pupils with disabilities on the grounds of organizational and economic hardship’.140 The CRPD Committee has also commented that even in Sweden reports indicate ‘that some children who need extensive support cannot attend school due to a lack of such support’.141 Furthermore, in the case of Denmark, discrepancies in accomplishment rates between students with and without disabilities in elementary, secondary and higher education have been observed.142 For further concerns about more specific accessibility issues, see section 5.1 on accessibility.
4.2.2 On an Equal Basis with Others in the Communities in which They Live In general, the requirement of access ‘on an equal basis with others’ could serve as a limiting provision, requiring that states take affirmative measures to assure the access of PWD to education only to the same extent they do so for persons without disabilities. For example, it could mean that a state only has to provide bus transportation for a student who uses a wheelchair to the extent it provides bus transportation to other non-disabled students in the same community (who may not need transportation in the same way). This leads to another potentially limiting aspect of the sub-paragraph: ‘in the communities in which they live’ arguably allows for inter-and intra-state disparities in meaningful access to education for PWD. The reference point for equality of treatment in this formulation is not an international standard, nor a standard for a particular nation as a whole, but rather the operative standard in the particular community where a student happens to reside. Notwithstanding this potentially narrowing aspect of the language, it may also entail a helpful aspect, which is that, to the extent that it allows a student to be educated in a specialized school, it could be interpreted to require that such a school be accessible within a student’s community rather than at a far-away distance from the student’s home. In a relevant legal case (European Action of the Disabled (AEH) v France), students with autism, due to a shortage of appropriate places and facilities in France, attended specialized schools in Belgium with the expenses paid by the French state. The European Committee of Social Rights (ECSR) considered ‘the flow of children and adolescents from France to Belgium solely involves persons with disabilities, including persons with autism, attending specialized schools so as to meet schooling or vocational training needs, ‘illustrates the respondent Government’s failure to cater for the specific schooling needs of all these persons within its national territory’;143 since, there was no evidence about a cross-border flow—from France to Belgium—of typically developing children, the ECSR found that this violates the right of young persons with autism to vocational training and 138 CRPD Committee, ‘Concluding Observations on the Initial Report of Slovakia’ CRPD/C/SVK/CO/1 (11 May 2016) para 67. 139 CRPD Committee, ‘Concluding Observations on the Initial Report of Guatemala’ CRPD/C/GTM/ CO/1 (15 May 2017) para 59. 140 CRPD Committee, ‘Concluding Observations on the Initial Report of Sweden’ CRPD/C/SWE/CO/1 (12 May 2014) para 47. 141 ibid. 142 CRPD Committee, ‘Concluding Observations on the Initial Report of Denmark’ CRPD/C/DNK/CO/ 1 (3 October 2014) para 52. 143 European Committee of Social Rights, European Action of the Disabled (AEH) v France Complaint no 81/2012 Decision on The Merits of 11 September 2013 § 134, 135.
anastasiou, gregory, and kauffman
682
Education
it is a form of direct discrimination against their families because families have no other choice than to leave the national territory.144 Thus, the ECSR determined that the specific needs of students with disabilities should be addressed, and their right to education, including vocational training, must be enjoyed within their national territory.
4.3 Paragraph 2(c): Reasonable Accommodation By establishing the duty to ensure ‘reasonable accommodation of the individual’s requirements’, sub-paragraph 2(c) is the first provision in article 24 to move beyond actions required to support PWD as a group.145 In other words, reasonable accommodation is an obligation on an individual basis and activated by demand of an individual. The term ‘reasonable accommodation’ is used seven times in the CRPD and can be considered an innovation, as it is the first time that it has been included in an international human rights treaty,146 and is fairly innovative in several legal systems.147 According to article 2 of the CRPD, ‘reasonable accommodation’ is defined as ‘necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms’. In addition, article 5 of the CRPD links reasonable accommodation to the promotion of equality and elimination of discrimination. In its most recent General Comment addressing article 24, the CRPD Committee clarified several aspects of the reasonable accommodation requirement. The Committee had previously made the distinction between accessibility and reasonable accommodation by noting that ‘accessibility is related to groups, whereas reasonable accommodation is related to individuals’ and is complementary to the accessibility duty.148 It also clarified that unlike accessibility, which is subject to progressive realization (meaning implemented gradually as a state has resources to do so), ‘[t]he duty to provide reasonable accommodation is an ex nunc duty, which means that it is enforceable from the moment an individual with an impairment needs it in a given situation, for example, workplace or school’.149 In our view, in the context of article 24, reasonable accommodations might include at least three particular kinds of ‘modifications and adjustments’: a) adjustment to premises, as is the case in UK law; b) modification of procedures for testing and assessment, as is the case in the UK and US laws; and c) provision of a reader or interpreter, as is the case in UK and US laws.150 In addition, the CRPD Committee has clarified that possible ibid §143, 144, Conclusion. The CRPD Committee acknowledged this distinction, stating that ‘[a]ccessibility is related to groups, whereas reasonable accommodation is related to individuals’; see CRPD Committee, ‘General Comment No 2 on Article 9: Accessibility’ UN Doc CRPD/C/GC/2 (22 May 2014) paras 25, 26. 146 Lucyline Nkatha Murungi, ‘The Significance of Article 24(2) of the UN Convention on the Rights of Persons with Disabilities for the Right to Primary Education of Children with Disabilities: A Comparative Study of Kenya and South Africa’ (LLD thesis, University of Western Cape 2013) 193–94. However, the term ‘reasonable accommodation’ was earlier included in UN Committee on Economic, Social and Cultural Rights ‘General Comment No 5: Persons with Disabilities’ (1994) para 15 UN Doc E/1995/22. The UN Committee on Economic, Social and Cultural Rights notes that ‘ “disability-based discrimination” may be defined as including any distinction, exclusion, restriction or preference, or denial of reasonable accommodation based on disability which has the effect of nullifying or impairing the recognition, enjoyment or exercise of economic, social or cultural rights’ (para 15). 147 Letícia de Campos Velho Martel, ‘Reasonable Accommodation: The New Concept from an Inclusive Constitutional Perspective’ [2011] 8(14) SUR International Journal on Human Rights 87. 148 149 CRPD Committee, ‘General Comment No 2’ (n 145) paras 25, 26. ibid para 26. 150 ibid; ADA section 12111. 144 145
anastasiou, gregory, and kauffman
Article 24
683
accommodations include: a) curriculum adaptations such as ‘providing all handouts in an alternative format, providing students with a note-taker’,151 and; b) ‘the use of assistive technology in learning and assessment situations’ (emphasis added).152 It is noted that an explicit reference to accessible physical environment and accessible curriculum was in the initial Ad Hoc Committee’s Chair’s Draft of article 24, but was subsequently removed.153 Helpfully, as noted above, article 5(3) CRPD also imports the concept of reasonable accommodation into its definition of equality and non-discrimination, stating that ‘in order to promote equality and eliminate discrimination, states parties shall take all appropriate steps to ensure that reasonable accommodation is provided’. On this basis, a failure to provide reasonable accommodation can constitute discrimination on the basis of disability.154 In addition, according to the CRPD Committee, in several concluding observations, the denial of reasonable accommodation in education should be recognized as a form of discrimination (disability-based discrimination).155 In this context, the CRPD Committee has pushed states parties to enforce the concept of reasonable accommodation in domestic law, not only in employment but also in other areas and importantly in education,156 or establish a legally defined procedure for the provision of reasonable accommodation in education.157 Establishing this link between ‘reasonable accommodation’ and the concepts of equality and non-discrimination arguably broadens the meaning of equality and anti-discrimination in the direction of a substantive equality of opportunity conceptualization,158 taking individual differences into consideration and undertaking reasonable alterations to ensure equal opportunities.159 However, there are two aspects of the way reasonable accommodation is defined and employed in articles 2 and 24 CRPD that set limits on a substantive equality of opportunity conceptualization. First, the core concept of reasonable accommodation in article 2 CRPD is accompanied by two inhibitory barriers, disproportionate and undue burden, which are negotiable. Second, it is important to remember that all these concepts are borrowed from an employment or public services context160 and in that context usually 152 CRPD Committee, ‘General Comment No 4’ (n 5) para 29. ibid. Chair’s Draft Elements of a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities (December 2003) 16, available at: . 154 CRPD Committee, ‘General Comment No 4’ (n 5) paras 29, 40; Tennessee v Lane et al, 541 US 509 124 S Ct 1978 (2004). 155 eg CRPD Committee, ‘Concluding Observations on the Initial Report of Ethiopia’ CRPD/C/ETH/ CO/1 (4 November 2016) para 9; CRPD Committee, ‘Concluding Observations on the Initial Report of Luxembourg’ CRPD/ C/ LUX/ CO/ 1 (10 October 2017) para 10; CRPD Committee, ‘Concluding Observations on the Initial Report of Serbia’ CRPD/C/SRB/CO/1 (23 May 2016) para 50. 156 CRPD Committee, ‘Concluding Observations on the Initial Report of Ethiopia’ CRPD/C/ETH/CO/ 1 (4 November 2016) para 9. 157 CRPD Committee, ‘Concluding Observations on the Initial Report of Luxembourg’ CRPD/C/LUX/ CO/1 (10 October 2017) para 42(a). 158 See Richard Anderson, ‘Equality of Opportunity’ in Stanford Encyclopedia of Philosophy Spring 2009 1–47. 159 Murungi explains: ‘The classic understanding of discrimination entails a negative duty to desist from certain conduct. This conceptualization is consistent with the notion of formal equality. Including reasonable accommodation in non-discrimination effectively redefines this concept and anchors substantive accommodation’. In Murungi ‘The Significance of Article 24(2)’ (n 146) 195. 160 ‘The scope of reasonable accommodation, based on the legislation reviewed, does not usually extend to all areas of social, political, civil and economic life covered by the discrimination prohibition. It is often statutorily limited to the employment and housing contexts and/or the provision of public goods and services.’ See Background Conference Document on the Concept of Reasonable Accommodation prepared by the Department of Economic and Social Affairs (DESA) December 2005 UN Doc A/AC265/2006/CRP 1. 151 153
anastasiou, gregory, and kauffman
684
Education
subjected to a cost-benefit analysis.161 The point being that a reasonableness standard (as opposed to appropriateness) subjects the provision of accommodations to economic and resource constraints rather than being determined solely on the basis of an individual’s demonstrated needs.162 The CRPD Committee has clarified that reasonable accommodation should not entail any cost for students with disabilities.163 In the case of Brazil, the CRPD Committee has suggested that the CRPD’s reasonable accommodation provision applies not only to the public but also to private education facilities.164 It has also recommended that states parties should ‘ensure that reasonable accommodation is provided at all levels of education and that the right to such accommodation is legally enforceable and justiciable before the courts’.165 Finally, it should be also noted that reasonable accommodation is among the most frequent concerns expressed by the CRPD Committee in its Concluding Observations on the periodic reports of states,166 and it seems that the Committee, during its monitoring task, has invested much energy in using this tool as a vehicle of change for discriminatory acts and discriminatory attitudes. Nevertheless, there are limitations to the transformative power of this important legal strategy. We should not forget that reasonable accommodation is based on the student’s individual requirements as the CRPD Committee made crystal clear in its Concluding Observations on Hungary’s initial report.167 Challenging the denial of rights through legal actions is costly in terms of resources and time. As indicated by Oliver and Barnes, two strong proponents and advocates of the social model of disability, ‘the overwhelming majority of disabled people and their organizations in both rich and poor nations rarely have either [resources or time]’.168 On the other hand, we should not underestimate the social ripple effect, as successful individual demands can expand across educational settings.
161 In a work context, the two parameters disproportionate and undue burden entail a balancing of the cost relative to the profit as accrue to the employer, as Murungi underlined; see Murungi, ‘The Significance of Article 24(2)’ (n 146) 196; also see DESA (n 160). 162 The guarantee of a Free Appropriate Public Education (FAPE) under American special education law (IDEA) is an illustrative contrast. Children with disabilities are entitled to their FAPE regardless of a school districts ability to pay. 163 CRPD Committee, ‘General Comment No 4’ (n 5) para 24; see also CRPD Committee, ‘General Comment No 2’ (n 145) para 25. 164 CRPD Committee, ‘Concluding Observations on the Initial Report of Brazil’ CRPD/C/BRA/CO/1 (29 September 2015) para 45. 165 CRPD Committee, ‘Concluding Observations on the Initial Report of Germany’ CRPD/C/DEU/CO/ 1 (13 May 2015) para 46(c). 166 eg CRPD Committee, ‘Concluding Observations on the Initial Report of Ethiopia’ CRPD/C/ETH/ CO/1 (4 November 2016) para 9; CRPD Committee, ‘Concluding Observations on the Initial Periodic Report of Hungary’ UN Doc CRPD/C/HUN/CO/1 (22 October 2012) para 39; CRPD Committee, ‘Concluding Observations on the Initial Report of Luxembourg’ CRPD/C/LUX/CO/1 (10 October 2017) para 10; CRPD Committee, ‘Concluding Observations on the Initial Report of Mexico’ CRPD/C/MEX/CO/1 (27 October 2014) para 48(a); CRPD Committee, ‘Concluding Observations on the Initial Report of Serbia’ CRPD/C/ SRB/CO/1 (23 May 2016) para 50. 167 CRPD Committee, ‘Concluding Observations on the Initial Periodic Report of Hungary’ UN Doc CRPD/C/HUN/CO/1 (22 October 2012) para 41. 168 Michael Oliver and Colin Barnes, The New Politics of Disablement (Palgrave Macmillan 2012) 151.
anastasiou, gregory, and kauffman
Article 24
685
4.4 Paragraph 2(d): Individualized Support Sub-paragraph 2(d) continues to build upon the individualization introduced in sub- paragraph 2(c) by incorporating the obligation to provide individualized support. Sub- paragraph 2(d) requires that ‘persons with disabilities receive the support required, within the general education system, to facilitate their effective education’. This provision helps to remedy some of the ambiguities in earlier sections that leave article 24 vulnerable to superficial readings of its conception of inclusive education. It clearly indicates an obligation to provide differential treatment based on the individual’s requirements, or needs, and it also introduces the substantive standard of ‘effectiveness’. Leaving aside for a moment a potentially problematic implication about the setting in which such individualized support is to be provided, which we will take up next in our discussion of subparagraph 2(e), the primary shortcoming of article 24’s guarantee of individualized support is the omission of any provision for facilitating its operationalization—namely, it includes no mention of individualized planning in the final version, despite references to such in earlier drafts. In American legislation, by way of contrast, the centrepiece of specialized and individualized support is the Individualized Education Program (IEP).169 The IEP is the primary vehicle for implementing and monitoring specialized and individualized provisions for each child with a disability receiving special education under the IDEA.170 The IEP is a legal document containing written statements of specialized instruction and related services for each child with a disability designed to meet his or her unique needs. In fact, the IEP is the cornerstone of IDEA and at the centre of most special education disputes in administrative settings and courts.171 The value of IEPs is a keystone of specialized and individualized support and ‘is internationally accepted and is underpinned by law in many countries including the USA, Australia, Canada, New Zealand and the UK’172, Ireland, 173 Greece,174 Italy,175 and Finland.176 In the Working Group draft of January 2004, an additional sub-paragraph (d) under article 24(1) referred to ‘taking into account the best interests of the child, in particular by individualizing education plans’.177 This reference to individualized education plans was retained until the sixth session,178 but was subsequently dropped at the seventh session. The Ad Hoc Committee justified its removal on the basis that ‘some delegations supported the idea, but could not agree as to how it should be expressed’.179 Given the
20 USC § 1401 (14). The statute’s substantive guarantee Free Appropriate Public Education is determined for each individual child with a disability in relation to the contents of the IEP; 20 USC § 1401 (9). 171 Barbara D Bateman, ‘Individual Education Programs for Children with Disabilities’ in James M Kauffman, Daniel P Hallahan, and Paige Cullen Pullen (eds), Handbook of Special Education (2nd edn, Routledge 2017) 87–104; Barbara and Mary Anne Linden, Better IEPs: How to Develop Legally Correct and Educationally Useful Programs (4th edn, Sopris West 2006); Edwin Martin, Breakthrough: Federal Special Education Legislation 1965–1981 (Bardof 2013). 172 Ireland, National Council for Special Education, Guidelines on the Individual Education Plan Process (Author 2006). 173 Ireland Education Act 2004, Education for People with Special Educational Needs (EPSEN). 174 Law 3699, Special Education of Individuals with Disabilities or Special Educational Needs, 2008 Arts 4(3), 6(5). 175 Law no 104 5 February 1992. 176 Anastasiou and Keller, ‘International Differences in Provision’ (n 4). 177 Report of the Working Group to the Ad Hoc Committee (n 61) Art 17(d) 21. 178 179 Sixth Session, Report of the Ad Hoc Committee (n 40). ibid. 169 170
anastasiou, gregory, and kauffman
686
Education
widespread use of IEPs in most developed countries, this justification sounds at least unusual. Even if the members of the Ad Hoc Committee lacked the expertise to formulate an acceptable articulation of this concept, they could have sought advice from a scientific working group, as they did in the case of reasonable accommodation. It is only recently that the CRPD Committee has emphasized the importance of individualized education plans.180 Overall, the lack of an individualized planning mechanism weakens the guarantee of individualized support in article 24 and renders it inconsistent with accepted scientific and professional norms, the standard of care in much domestic legislation, and on-the-ground reality in many developed countries. In the work of the CRPD Committee, concerns about individualized support for students with disabilities have rarely been expressed. Notable exceptions are the most recent Concluding Observations on initial reports, such as those of Chile,181 and Montenegro.182
4.5 Paragraph 2(e): The Educational Environment While sub-paragraphs 2(d) and (e) both do some work to dispel ambiguities around article 24’s toleration of differential individualized treatment, they at the same time reinforce many of the concerns discussed earlier with respect to the permissibility of education in specialized settings. Sub-paragraph 2(d) requires, for example, that PWD receive individualized support ‘within the general education system’. This language raises the same questions as the language in sub-paragraph 2(a) about non-exclusion described above. Even more vexing, sub-paragraph 2(e) is perhaps the most ambiguous and paradoxical clause of the entire article, as it provides for ‘effective individualized support’ in ‘environments that maximize academic and social development’—which implies a special educational needs paradigm—while at the same time insisting these provisions be implemented ‘consistent with the goal of full inclusion’. The first proposition emphasizes individualized and effective support and recognizes the important role learning environments play in maximizing academic and social development. In addition, the use of the plural ‘environments’, as noted by many during the travaux préparatoires, would seem to open up the possibility that PWD might be educated in a spectrum of environments that extend beyond the general or ‘regular’ education classroom. However, the second proposition introduces the concept of ‘full inclusion’, which is typically used to signify the education of all PWD in mainstream settings. Thus, the two propositions are seemingly incompatible unless ‘full inclusion’ means something other than placement of all PWD in general education.183
4.5.1 Full Inclusion By articulating a goal of full inclusion in sub-paragraph 2(e), article 24 situates itself in the midst of an ongoing and sometimes hostile debate, with pedagogical, political, and economic dimensions. The terms ‘inclusion’ and ‘full inclusion’ are used in most Western CRPD Committee, ‘General Comment No 4’ (n 5) para 32. ‘Provide personalized instruction and the necessary support and resources, such as Braille and sign language, to foster inclusion, in particular of students with intellectual or psychosocial disabilities’ in CRPD Committee, ‘Concluding Observations on the Initial Report of Chile’ CRPD/C/CHL/CO/1 (13 April 2016) para 50(b). 182 CRPD Committee, ‘Concluding Observations on the Initial Report of Montenegro’ CRPD/C/MNE/ CO/1 (22 September 2017) para 45(b). 183 See Bronagh Byrne, ‘Hidden Contradictions and Conditionality: Conceptualisations of Inclusive Education in International Human Rights Law’ (2013) 28 Disability & Society 241. 180 181
anastasiou, gregory, and kauffman
Article 24
687
nations to convey very different meanings.184 In an inclusion model, the aim is to meet the unique needs of PWD so as to promote their learning and socialization. While this can entail a preference for education in mainstream settings, it also allows for a continuum of alternative placements in which PWD can be placed when appropriate, in separate specialized settings.185 In a full inclusion model 186 mainstream settings are the only option for PWD; specialized settings, even as an exception, are not legitimate. All PWD (each and every one; no exceptions) should be in age-appropriate general education classes in a neighbourhood school (ie in a class or grade with students of similar age who do not have disabilities).187 Full inclusion typically implies the abolition of special education outside the general education classroom.188 Full inclusion policies have occasionally been promoted by some intergovernmental economic organizations, as much because of their potential to reduce cost as because of their perceived moral or pedagogical advantages.189 To the extent the ambiguities described in earlier sections of article 24—particularly with respect to the requirement of non-exclusion from general education—allow for a reading that would prohibit placement in specialized settings, sub-paragraph 2(e) increases that likelihood substantially by articulating an explicit goal of full inclusion. Mary Warnock,190 a renowned advocate for the inclusion movement in the UK and worldwide, has argued that the right to learn is not the same as the right to learn in the same environment and that, in considering placement, we should not be indifferent to educational outcomes.191 The World Federation of the Deaf (WFD) has argued that physical presence does not mean mental and social presence or commitment to learning.192 Furthermore, placement of a child with an intellectual disability in general education may not always be appropriate.193 In our view, only education that is meaningful to individual learning needs can maximize knowledge, skills, and job prospects consistent with article 24’s expansive vision for PWD and therefore, to the extent article 24’s full inclusion provision can be read to prohibit the provision of individualized supports and reasonable accommodations in non-mainstream settings, we have concerns about the article’s efficacy in distributing socio-economic justice equitably among all PWD. ibid; Fuchs and Fuchs (n 81). ibid; In addition, the American IDEA includes a rebuttable presumption—called the Least Restrictive Environment (LRE) presumption—which requires that ‘to the maximum extent appropriate, children with disabilities . . . are educated with children who are not disabled, and special classes, separate schooling, or other removal of children with disabilities from the regular education environment occurs only when the nature or severity of the disability of a child is such that education in regular classes with the use of supplementary aides and services cannot be achieved satisfactorily’ 20 USC § 1412 (a)(5). 186 For the full inclusion perspective, see eg Dorothy Kerzner Lipsky and Alan Gartner, ‘Inclusion, School Restructuring, and the Remaking of American Society’ (1996) 66 Harvard Educational Review 762–96. 187 188 ibid. Warnock (n 93) 139. 189 OECD, Inclusive Education at Work: Students with Disabilities in Mainstream schools (OECD 1999) 46; Susan J Peters, Inclusive Education: An EFA Strategy For All Children (World Bank 2004) 47. 190 Mary Warnock chaired a committee that resulted in the Warnock Report (1978). The Report formed the basis of the UK Education Act of 1981 that promoted the integration and inclusion movement in the UK and worldwide. For the UK Education Act of 1981, available at: . 191 Warnock (n 93) 36, 139. 192 World Federation of the Deaf (WFD) Education Rights for Deaf Children: A Policy Statement of the World Federation of the Deaf (July 2007) iii, available at: . The advocacy of this organization and others resulted in the clear exception of the requirement that students with sensory impairments be educated in environments ‘consistent with the goal of full inclusion’. 193 See T W by McCullough and Wilson v Unified Sch Dist No 259, Wichita, Kan, 43 IDELR 187, 136 F App’x 122 (10 Cir 2005). 184 185
anastasiou, gregory, and kauffman
688
Education
While the ideal of full inclusion for PWD in mainstream educational environments has an aspirational appeal, it is important to point out that more pragmatic critics of full inclusion have noted the following: i) Radical systemic educational change could lead to either utopia or dystopia (or their intermediate shades), as it is not necessarily accompanied by corresponding radical social, cultural, or economic transformation. Data from twenty countries suggests long- term structural inequalities.194 Macro-systemic socioeconomic factors significantly affect availability, accessibility and the quality of special needs education.195 A highly idealized approach, in the stricter full inclusion sense, ignores the surroundings of the education system and the fact that education is not a closed, well-insulated ‘thermos bottle’, but instead both energy (degree of inclusiveness and responsiveness to special needs) and matter (eg financial and human resources) are typically exchanged with the environment. ii) Future technology may provide new solutions to sensory and physical disabilities, facilitating the efficacy of mainstream education for students with these disabilities, but the likelihood that such technology will deliver similar solutions for students with cognitive and other mind-related disabilities is far less certain.196 iii) Empirical evidence does not support the assertion that the benefits of mainstream settings over specialized settings for academic learning and social benefits are equally realized by all students. Research does not support one type of placement as being the most effective for all students. Furthermore, many have argued that instruction is more important for educational success than place or setting.197 The common denominator, under article 24, is over-emphasis of the principle of equality of treatment and under-emphasis of the principle of differential treatment based on special educational needs.198 Antidiscrimination language and equality of opportunity are ideals that may be beneficial to many people with physical or sensory disabilities. Advances in assistive technology may facilitate their participation in social spheres and promote their autonomy in significant ways.199 Our impression is that some well-intended policymakers do not have a clear understanding of how serious a disability of a particular kind can be, especially disabilities that are more ‘invisible’ because they are cognitive or emotional rather than physical. High quality education for all requires that we not disregard the atypical
See Thomas Piketty, Capital in the Twenty-First Century (Harvard University Press 2014). See empirical evidence on 143 countries in Anastasiou and Keller, ‘Cross-National Differences in Special Education Coverage’ (n 4). 196 Dimitris Anastasiou and James M Kauffman, ‘The Social Model of Disability’ (n 26); Yuval N Harari, Homo Deus: A Brief History of Tomorrow (Harvill Secker 2016). 197 See Barbara D Bateman, ‘Law and the Conceptual Foundations of Special Education Practice’ in Jean B Crockett, Michael M Gerber, and Timothy J Landrum (eds), Achieving the Radical Reform of Special Education: Essays in honor of James M Kauffman (Lawrence Erlbaum Associates 2007) 95–114; Kauffman and Badar, ‘Instruction, not Inclusion’ (n 82); James M Kauffman, Danniel P Hallahan, Paige Cullen Pullen, and Jeanmarie Badar, Special Education: What It Is and Why We Need It (2nd edn, Routledge 2018); James M Kauffman, Marion Felder, Bernd Ahrbeck, Jeanmarie Badar, and Katrin Schneiders, ‘Inclusion of All Students in General Education? International Appeal for A More Temperate Approach to Inclusion’ Journal of International Special Needs Education; Naomi P Zigmond and Amanda Kloo, ‘General and Special Education Are (and Should Be) Different’ in James M Kauffman, Daniel P Hallahan, and Paige Cullen Pullen (eds), Handbook of Special Education (2nd edn, Routledge 2017) 249–62. 198 Lorella Terzi, Justice and Equality in Education: A Capability Perspective on Disability and Special Educational Needs (Continuum 2010) 71–74; Warnock, (n 93) 36, 139. 199 Harari, Homo Deus (n 196). 194 195
anastasiou, gregory, and kauffman
Article 24
689
needs of any human being. To paraphrase Aristotle,200 there is nothing more unequal than the same and invariant educational treatment of people with unequal learning capabilities. Beyond equality of opportunity as antidiscrimination and/or inclusion as physical presence in general classrooms, we need a pluralistic and contextualized approach to social justice operationalized by a needs-based analysis. For this reason, we need to add two other important principles, relevance and proportion, to achieve social justice.201 Relevance to learning and behavioural special needs demands that people be treated more or less the same, unless there are relevant educational reasons for treating them differently.202 In the case of education of PWD, relevance has to do with the ability to learn. Proportion203 of specialized and intensive education requires that people be treated differently only for relevant reasons, and most importantly the treatment they receive should be proportionate to their special educational needs in a pattern of increasing intensity, including specialized and individualized instruction, even if outside the general education classroom.204 A society dedicated to fulfill the needs of all PWD does not depart from ideals of equality if, at some stage in their educational course, students follow different curricula in different settings.205 Quite the contrary, it extends equality in the direction of fairness and justice, and in our view this is the best way of maximizing learning.
4.5.2 Full Inclusion as Totally Supportive Environments An alternative interpretation of the phrase full inclusion could solve the aforementioned contradiction in the provisions of sub-paragraph 2(e). During the preparatory works, the term was mainly addressed in the discussions of the sixth session. Outside the context of education it has the meaning of ‘full [inclusion/participation] in the community’.206 In the context of PWD, ‘full inclusion’ often means totally supportive environments, even if they are not in general education.207 Throughout the negotiations of the drafting process and after the passage of the CRPD, the WFD advocated such a meaning for deaf students.208 From our point of view, both effective individualized support and full inclusion interpreted as totally supportive environments could mean the right to an appropriate, high-quality education, including where appropriate the provision of specialized services and/or placement in specialized settings. Aristotle, Politics, III.9.1280 a9-15 (William Heinemann 1959). David Miller, Principles of Social Justice (Harvard University Press 1999); Walzer, Spheres of Justice (n 14). 202 ibid; Aristotle, Nicomahean Ethics V 3 1131a10-b24 (Chicago University Press 2011); Politics III.9.1280 a9-15, III.12. 1282b18-23. b24. 203 ibid. 204 In her critique of the integration presumption contained in US special education law, Colker seems to envision this kind of proportionate approach to the intensity (and possible separateness) of education for students with disabilities: ‘continuum of services regulations should be given greater weight than the integration presumption. The integration presumption should serve its historical purpose of preventing school districts from only offering segregated, disability-only education, but the integration presumption should not be understood to dictate that a fully inclusive education is necessarily the best educational option when a school district offers a continuum of educational alternatives. The continuum of services regulation should play a bigger role in the [special education] process, with a school district failing to meet its procedural requirements if it does not offer a continuum of services within the public school building. . . . Increased emphasis on the continuum of services rule, and less emphasis on an integration presumption favoring full inclusion, would often attain better results.’ Ruth Colker, ‘The Disability Integration Presumption: Thirty Years Later’ (2006) 154 University of Pennsylvania Law Review 856–57. 205 Christopher Winch, Quality and Education (Blackwell 1996) 55; Imray and Colley (n 81). 206 Sixth Session, Report of the Ad Hoc Committee (n 41). 207 Seventh Session of the Ad Hoc Committee, Comments, Proposals and Amendments Submitted Electronically on Article 24— Education, available at: . 208 WFD (n 192). 200 201
anastasiou, gregory, and kauffman
690
Education
4.5.3 Special Education The absence of ‘special education’ and ‘special needs’ in article 24 is a great enigma. The silence on special education settings also reveals a discontinuity between the CRPD and previous policies generated by the UN system. For example, Rule 6 of the SREOPD clearly acknowledged ‘that in some instances special education may currently be considered to be the most appropriate form of education for some students with disabilities’. Although, the UNESCO’s Salamanca Statement is often regarded as providing support for full inclusion, this view is not universally held.209 Precisely, it reads, ‘We call upon all governments and urge them to . . . adopt as a matter of law or policy the principle of inclusive education, enrolling all children in regular schools, unless there are compelling reasons for doing otherwise.’210 (emphasis added). The travaux préparatoires give some insight into this absence. At the early stages, special education was present in the third paragraph of the draft article 17 (‘Education’) prepared by the Working Group of the Ad Hoc Committee.211 The Working Group Report stated that some members considered this to be an important element of the paragraph, but other members considered the right to education more important.212 This Report also emphasized that ‘the general education system and specialist education services are not mutually exclusive options, and that there is a range of options in between that are available’.213 The idea that the general education system and special education are not mutually exclusive options was reiterated during the third session,214 the fourth session,215 and reflected in the draft of the article in the fifth session.216
Michael Farrell, Debating Special Education (Routledge 2010) 22. UNESCO, The Salamanca Statement ix. 211 The third paragraph of the article read as follows: ‘States Parties shall ensure that where the general education system does not adequately meet the needs of persons with disabilities special and alternative forms of learning should be made available. Any such special and alternative forms of learning should: . . . (b) Be provided in such a manner as to allow children with disabilities to participate in the general education system to the maximum extent possible’; see Report of the Working Group to the Ad Hoc Committee UN Doc A/AC265/2004/WG 1 (27 January 2004). 212 ibid; the Working Group Report summarized that, ‘[s]ome members considered that education of children with disabilities in the general education system should be the rule, and the provision of specialist education services the exception. Others thought that specialist education services should be provided not only where the general education system was inadequate, but should rather be made available at all times without a presumption that one approach was more desirable than the other.’ 213 ibid. 214 ‘The intention . . . is to ensure that the general education system and specialist education services are not mutually exclusive options, and that there is a range of options in between that are available.’ Third Session of the Ad Hoc Committee, Compilation of Proposed Revisions and Amendments (n 61), available at: . 215 eg Sudan’s amendment proposal was ‘allow a free and informed choice between general and special systems’, as it did the Children’s Rights Alliance for England, the Landmine Survivors Network. The RESCARE commented that ‘We strongly object to that right to choose by such parents being withdrawn from Article 17 as suggested by the Centre for Studies on Inclusive Education, Bristol, UK (CSIE) a right to choose which is afforded all other parents. It is not a question of one type of educational process versus another but a comprehensive service with each area of specialized expertise having a part to play with the quality of outcome being the ultimate criteria not the process. As our Department for Education and Skills (DfES) confirmed 25 July 2002 “Inclusion is not an agenda for the closure of special schools.” ’ See Fourth Session of the Ad Hoc Committee, Background Documents of the CRPD, available at: . 216 Fifth Session of the Ad Hoc Committee, Background Documents of the CRPD, available at: . 209 210
anastasiou, gregory, and kauffman
Article 24
691
At the fifth, sixth, seventh, and eighth sessions, the Centre for Studies on Inclusive Education (CSIE), a UK-based organization, lobbied for an emphasis on full inclusion.217 It is noteworthy that its influence in drafting the CRPD was rather disproportionate to its international significance and recognition in the professional world of education.218 In addition the European Union (EU) introduced the phrase ‘the goal of full inclusion’ in the chapeau of paragraph 1 at the sixth session.219 After proposals and comments submitted mainly by the CSIE and the EU, heated debates were provoked. Specifically, during the critical sixth session, six out of nine governments (China, Japan, Kenya, Philippines, Sudan, and Thailand) submitted comments, proposals and amendments, which favoured the right to choose between general and special education systems.220 In addition, the UNESCO and Thailand expressed the view that inclusiveness refers to the entire system and not to a particular service delivery model.221 Several disability organizations (the WFD, the World Blind Union, the World Federation of the Deaf-Blind, and the RESCARE222) submitted similar proposals or comments in favour of the special education option.223 However, in the consolidation of proposals submitted by the Australian facilitator, the wording was closer to the final form of article 24,224 that is, an explicit reference to special education was removed, but an implicit reference remained. Specifically, the second paragraph of the article 17 on Education read as follows: (d) persons with disabilities receive the support required, within the general education system, to facilitate their effective education. In exceptional circumstances where the general education system cannot adequately meet the support needs of persons with disabilities, States Parties shall ensure that effective alternative support measures are provided, consistent with the goal of full inclusion.225 (emphasis added)
In addition, the Ad Hoc Committee stated that there was a need to balance inclusiveness with education options for PWD.226 The draft article was referred to the facilitator for further discussion.227 The Chair of the Ad Hoc Committee, Ambassador MacKay, issued the Chair’s Text, a draft for the discussed articles of the convention in October 2005. In respect to article 24, the Chair’s Text reflected the language of the Australian facilitator and Ad Hoc Committee Report on its sixth session (see section 2: Travaux).228
217 The CSIE strongly supported that ‘[i]nclusion is a right and should not be a matter of choice’; see eg Fifth Session of the Ad Hoc Committee, Background Documents of the CRPD, available at: . 218 Kauffman, Anastasiou, Badar, Travers, and Wiley (n 4); see also . 219 Proposed Modifications by Governments: European Union, available at: . 220 Sixth Session of the Ad Hoc Committee, Background Documents of the CRPD, ‘Comments, Proposals and Amendments Submitted Electronically’, available at: . 221 ibid. 222 The RESCARE is a UK-based organization representing families having children with intellectual disabilities and/or autism spectrum disorders. 223 224 Sixth Session of the Ad Hoc Committee, Background Documents of the CRPD. ibid. 225 ibid. 226 Sixth Session of the Ad Hoc Committee, Report of the Ad Hoc Committee UN Doc A/60/266 (17 August 2005) 9. 227 ibid p 12. 228 ‘Letter dated 7 October 2005 from the Chairman to all members of the Committee’ UN Doc A/AC265/ 2006/1 Annex II, (14 October 2005).
anastasiou, gregory, and kauffman
692
Education
A few days before the opening of the seventh session, the RESCARE, representing families having children with severe learning (intellectual) disabilities and/or autism spectrum disorders, sent a letter to the Ad Hoc Committee in which it expressed disappointment about the withdrawal of an explicit reference to the right of parental choice of special schools from the Chair’s Text.229 It also emphasized that choice is a fundamental and reasonable right of everyone in a democratic society.230 At the seventh session of the Ad Hoc Committee, the draft of article 24 (on 24 January 2006) was further discussed. Several countries (Japan, Kenya, Senegal, the Russian Federation, Israel, and China) insisted on a more explicit reference to special education,231 or realism-based approach according to the words of the Chair’s session.232 Disability organizations such as the WFD, the World Blind Union, and the World Federation of the Deaf-Blind first reacted against the introduction of the term, and then interpreted it differently.233 However, Canada, supported by other countries, proposed replacing the emphasis on exceptional language. In place of ‘in exceptional circumstances’, and ‘cannot’, Canada proposed the sentence ‘in order to meet adequately the individual support needs of persons with disabilities, States Parties shall ensure that effective individualized support measures are provided in environments which maximize academic and social development, consistent with the goal of full inclusion’ and instead of the phrase ‘to the extent possible’ it suggested the phrase ‘on an equal basis with others’.234 In the Report of the Ad Hoc Committee (just after the seventh session) the text regarding this controversial issue used different wording from that of the sixth session, including two specifications in square brackets, which referred to special education as follows: That persons with disabilities receive the support required, within the general education system, to facilitate their effective education. [In order to meet adequately] [In those circumstances where the general education system cannot adequately meet] the individual support needs of persons with disabilities, States Parties shall ensure that effective individualized support measures are provided in environments which maximize academic and social development, consistent with the goal of full inclusion.235
At the eight session (14–25 August, 2006), a group of countries, including the European Union, resubmitted the clause without further specifications: ‘States Parties shall ensure that effective individualized support measures are provided in environments that maximize academic and social development, consistent with the goal of full inclusion.’236 Alternatively, 229 Seventh Session, RESCARE, Letter to the Ad Hoc Committee, available at: . 230 ibid. 231 Seventh Session of the Ad Hoc Committee, Daily Summary of Discussion (24 January 2006) available at: . 232 ibid. 233 During the seventh session, the WFD, the World Blind Union, and the World Federation of the Deaf- Blind made a common statement, to interpret the term of full inclusion to mean totally supportive environments, see Seventh Session of the Ad Hoc Committee, available at: . 234 Seventh Session of the Ad Hoc Committee, Daily Summary of Discussion (24 January 2006) available at: ; Panama also opposed retention of the phrase ‘to the extent possible’. In addition, Australia submitted a proposal to reduce the exceptional language: ‘Where the education system cannot reasonably accommodate the needs of persons with disabilities, States Parties shall ensure that effective alternative support measures are provided in environments which maximize academic and social development, consistent with the goal of full inclusion.’. 235 Seventh Session, Report of the Ad Hoc Committee, UNGA, A/AC265/2006/2 19 (13 February 2006). 236 Eighth Session of the Ad Hoc Committee, Background Documents of the CRPD, available at: .
anastasiou, gregory, and kauffman
Article 24
693
China, the Russian Federation, Kenya, and some disability organizations (eg Global Deaf Connection, RESCARE)—with a notable exception of International Disability Caucus—either emphasized the importance of meeting adequately the special educational needs of persons with disabilities or defended the right to choose between a general or special education setting.237 Finally, in the Interim Report of the Ad Hoc Committee (1 September 2006), soon after the eighth and final session, article 24 was placed in almost final form.238 Thus, gradually, but without general consensus, an explicit reference to special education was lost in the final text, which has paved the way for considerably different interpretations. For example, in an interesting interpretation of ‘the goal of full inclusion’ the World Federation of the Deaf (WFD) advocated for a meaning of ‘totally supportive environments’ for students who are deaf. In their words, WFD holds that the least restrictive environment for a Deaf learner is whatever is the most enabling environment for that learner. Full inclusion for a Deaf learner means a totally supportive, signing and student- centred environment. This permits the learner to develop to his/her full educational, social and emotional potential. This is stated also in the Convention on the Rights of Persons with Disabilities. (emphasis added)239
In addition, two countries (the UK and Mauritius) have made interpretive declarations and/or reservations, which emphasize that inclusiveness of an education system does not preclude the existence of specialized units such as special classes and special schools.240 Specifically, the UK Joint Committee on Human Rights, consisting of twelve members appointed from both the House of Commons and the House of Lords, justified the relevant UK declaration and reservation as follows: ‘we therefore understand why the Government feels it necessary to enter a reservation and an interpretative declaration to make clear its understanding that a commitment to inclusive education is not incompatible with the continued existence of special schools’.241 Despite the reactions presented, this meaning—that education of PWD means ‘being involved in a common enterprise of learning, rather than being necessarily under the same roof ’242—seems to have been lost in the interpretation of article 24 by the current CRPD Committee, which arbitrarily framed the right to education as the ‘right to inclusive education’243 and used the disparaging phrase ‘segregated education for any form of special education’,244 which stands in stark contrast to the legislation of almost all
ibid. Eighth Session of the Ad Hoc Committee, Drafting Group, available at: . 239 WFD (n 192). 240 Available at: . 241 UK House of Lords and House of Commons Joint Committee on Human Rights, ‘UN Convention on the Rights of Persons with Disabilities: Reservations and Interpretative Declaration’ HL Paper (17 April 2009) 70 HC 397 para 44 p 17. 242 243 Warnock (n 93) 32. CRPD Committee, ‘General Comment No 4’ (n 5). 244 ibid paras 11, 13, 39; Germany strongly reacted to this disparaging term stated: ‘Paragraph 11 describes the education of students with disabilities in separate environments as “segregation”; the system of special needs schools in Germany falls in this category. The term “segregation” has nothing but negative connotations. As a State Party, Germany does not agree with such a view. The education system in Germany is built on the natural right of parents to determine the upbringing and education of their children. . . . An 237 238
anastasiou, gregory, and kauffman
694
Education
countries in the world (with the exception of Italy).245 In the discussions on the Draft General Comment No 4 by the CRPD Committee, Australia,246 and Germany247 resisted a narrow interpretation of article 24 as ‘right to inclusive education’ and argued for the maintenance of a multifaceted and flexible education system that includes specialized units and effectively responds to special educational needs.
4.5.4 The Right to Choose a School Another noteworthy tension between article 24 and other UN tools concerns ‘the right to choose schools’. The right of parents to choose schools for their children has been explicitly recognized by the UDHR, and legally binding treaties such as the ICESCR, article 13(3) and the CRC article 28 (see Table 24.1). However, article 24 remains silent on this right, and under a narrow interpretation of the text regarding full inclusion, could be read to restrict the broader right to appropriate education.
Table 24.1 The Right to Choose a School
Right to Choose
ICESCR
CRC
The UDHR, 1948
The States Parties . . . undertake to have respect for the liberty of parents and, when applicable, legal guardians to choose for their children schools, other than those established by the public authorities. . . . article 13(3)
No part of the present article or article 28 shall be construed so as to interfere with the liberty of individuals and bodies to establish and direct educational institutions, subject always to the observance of the principle set forth in paragraph 1 of the present article and to the requirements that the education given in such institutions shall conform to such minimum standards as may be laid down by the State. article 28
Parents have a prior right to choose the kind of education that shall be given to their children. article 26(3)
education system allowing parents to choose between inclusion at regular schools and special schools adheres to these constitutional principles. There can only be talk of “segregation” in the context of “educating students in separate environments,” if this is being done against the will of the parents; the definition of “segregation” should be complemented by this addition.’. See ‘German Statement Concerning the Draft General Comment on Article 24’ CRPD (2016) available at: . Anastasiou, Kauffman, and Di Nuovo (n 4); WHO (n 4) 210–11. ‘Australia’s view is that a State Party will meet its obligations under article 24 through an education system that allows for funding of different education modalities so students with disability are able to participate in a range of education options including enrolment in mainstream classes in mainstream schools with additional support, specialist classes or units in mainstream schools and specialist schools. A range of education options ensure that the best interests of the student are a primary consideration.’ See ‘Submission of the Australian Government Draft General Comment on Article 24 of the Convention on the Rights of Persons with Disabilities’ (2016) para 8, available at: . 247 ‘Germany points out that the notion that students receive education of an inferior quality at special schools is not valid for Germany. At these schools, students are taught by teachers with extraordinarily well- grounded academic training which takes several years to complete.’ See ‘German Statement concerning the Draft General Comment on Article 24 CRPD’ (2016) para 6, available at: . 245 246
anastasiou, gregory, and kauffman
Article 24
695
The right to choose is a cornerstone of the right to education in the liberal tradition.248 It is noteworthy that the right to choose either a general or special education setting was discussed at length during the drafting history of article 24. The Ad Hoc Committee clarified that The intent of this draft article (referring to right to education) is to provide the right to choose inclusive and accessible education. There is no intention to create an obligation on students with disabilities to attend general schools where their needs may not be adequately met.249
Contrary to the aforementioned articles of the ICESCR and the CRC, the Universal Declaration of Human Rights and the discussions of the travaux préparatoires, the CRPD Committee arbitrarily framed this right as ‘the right of the individual learner, and not, in the case of children, the right of a parent or caregiver’.250 But this interpretation of the CRPD Committee strongly deviates from the liberal tradition. As John-Stewart Gordon put it: it seems highly paternalistic to make inclusive education mandatory if parents and their impaired children agree that a homogenous educational setting would be more beneficial. The right to inclusive education should not limit their right to freedom of education.251
Another important dimension to the ‘right to choose’ question has to do with the ability of affluent parents to opt out of the public school system if they believe full inclusion is not appropriate for their children with disabilities. Given that the right to choose a private school is well-established in many nations,252 restricting the range of options available for children with disabilities within the public system can result in systemic inequities for low-income parents and their children. Even where the public system mandates full inclusion, it is usually possible for well-off parents to opt out of this system and find some way of purchasing education for their children with disabilities in private schools that provide high quality, individualized special education. To make this point clearer, if the need for intensive and individualized special education services is real, and public education retreats from meeting it, then a new market of private special and inclusive education schools could emerge and grow to fill the void (unless private options are explicitly prohibited). We note here that the CRPD Committee ‘notes the growth in many countries of private sector education’ for PWD,253 and it seems to feel comfortable with this growth.254 Under such circumstances, special education in separate settings could become a privilege, available only to students whose parents can afford it. It is noteworthy that in the United States, the special education law takes account of this dynamic and expressly allows for parents with means to unilaterally obtain privately administered education for their children with disabilities and to be reimbursed with public dollars if it is determined that the private school is more appropriate than publicly available Ilias Bantekas and Lutz Oette, International Human Rights Law and Practice (CUP 2013) 399–400. Report of the Working Group to the Ad Hoc Committee (2004) UN Doc A/AC265/2004/WG/1. 250 CRPD Committee, ‘General Comment No 4’ (n 5) para 10. 251 John-Stewart Gordon, ‘Is Inclusive Education a Human Right?’ (2013) The Journal of Law, Medicine & Ethics 755. 252 See eg Pierce v Society of Sisters, 268 US 510 (1925) (holding that parents’ ability to choose private schools for their children is a liberty interest protected by the 14th amendment to the US constitution). 253 CRPD Committee, ‘General Comment No 4’ (n 5) para 74. 254 The CRPD Committee seems to hold a neutral stance towards the growth of a private education for students with disabilities or even promote a non-public inclusive education when it states, ‘States parties should also allocate budgets using mechanisms available under . . . partnerships with the private sector’ General Comment No 4’ (n 5) para 67. The only requirement the CRPD Committee imposes is the private or business sector comply with inclusive goals, see para 74. 248 249
anastasiou, gregory, and kauffman
696
Education
options.255 As a measure of equity for parents without the means to make such a unilateral placement, and whose children remain in inappropriate public settings while they seek relief through the law’s procedural mechanisms, the courts have ordered ‘compensatory education’ as a retrospective remedy to make these children whole.256 The idea is that the type of education available to students with disabilities should not be a function of their families’ wealth, and yet this becomes a risk when the range of options available in the public system is restricted and the private market responds to meet the demand for publicly unavailable services.
5. Paragraph 3 5.1 Accessibility The CRPD, in general, mandates that states parties must ‘take measures to ensure to persons with disabilities access, on an equal basis with others, to’ ‘[b]uildings, roads, transportation and other indoor and outdoor facilities, including schools’.257 Notably, accessibility is one of the eight principles of the convention.258 In addition, the CRPD Committee has emphasized that accessibility ‘is a precondition for persons with disabilities to live independently and participate fully and equally in society’.259 The concept of accessibility should be distinguished from reasonable accommodation, because the former is group focused and subject to progressive realization, whereas the latter is individually focused.260 According to the CRPD Committee: ‘[a]ccessibility is related to groups, whereas reasonable accommodation is related to individuals’.261 If we want students to have access to schools, they should also have access to the entire physical and built environment before coming to school, and on the way between home and school (see also 4.2). Not accidentally, the CRPD Committee considers accessibility a prerequisite for equality of opportunity and a precondition for freedom of movement. Specifically, it highlighted that ‘[w]ithout access to the physical environment, to transportation, to information and communication, including information and communications technologies and systems, and to other facilities and services open or provided to the public, persons with disabilities would not have equal opportunities for participation in their respective societies’.262 It is notable that the Italian Constitutional Court (2016) found a law in the Region of Abruzzo that predicted limited transportation services for students with disabilities, in the context of fiscal constraints, constitutionally illegitimate.263 As explicitly indicated in article 9, paragraph 1(a) of the CRPD, schools have to be accessible. This is not restricted to school buildings and built environments in general, but also refers to school curricula, teaching and assessment methods. The CRPD 20 USC § 1412 (a)(10)(C)(ii). See eg MC v Central Reg Sch Dist 81 F 3d 389, 396 (3d Cir 1996) (holding that ‘the right to compensatory education accrues when the school knows or should know that its IEP is not providing an appropriate education’). 257 258 CRPD art 9 para 1(a). CRPD art 3(f ). 259 260 CRPD Committee ‘General Comment No 2’ (n 145) para 1. ibid paras 24 and 25. 261 262 ibid para 25. ibid para 1. 263 Italian Constitutional Court (Corte Costituzionale) Judgment 275/2016 (16 December 2016); see also Delia Ferri, ‘Unveiling the Challenges in the Implementation of Article 24 CRPD on the Right to Inclusive Education: A Case-Study from Italy [2018] 7(1) Laws 1–17. 255 256
anastasiou, gregory, and kauffman
Article 24
697
Committee satisfactorily clarified that the entire process of education must be accessible, ‘not just buildings, but all information and communication, including ambient or FM [frequency modulation] assistive systems, support services and reasonable accommodation in schools’.264 In other words, the accessibility principle, under the CRPD, clearly applies to information and communication systems for blind, deaf, and deaf-blind students. Thus, to foster accessibility and enhance the content of school curricula, instruction and assessments should be conducted in sign language, Braille, alternative script, augmentative and alternative modes, means and formats of communication and orientation, and promote mobility skills, as it is predicted by article 24 paragraph 3(a) and (b). Thus, there is a special focus on the appropriate languages and modes and means of communication used by blind, deaf and deaf-blind students.265 What accessibility means for those with marked intellectual and psychosocial disabilities is much more difficult to determine. Inaccessibility to educational facilities is among the major concerns of the CRPD Committee, in its Concluding Observations on the reports of states.266 In several cases, these concerns are expressed about inaccessible curricula for deaf and blind students, in the form of providing textbooks in Braille, sign language interpreters, alternative means and modes of communication, and easy reading texts.267 In a few cases, the CRPD Committee has identified ‘inappropriate teaching methods’ such as ‘the so-called verbo- tonal teaching method used exclusively in the education of deaf children, instead of providing education in the language of their choice’,268 which make curricula inaccessible. The Committee has also expressed concerns about wider accessible environments such as access of students with disabilities to public transport,269 as an inaccessible environment can amount to a barrier to the access to school. The Committee has also addressed issues that are pertinent to individualized accessible information and communications technology and assistive technologies in education.270 In some cases, member states have been urged to introduce universal design and reasonable accommodation principles in their legislative framework on education.271
CRPD Committee ‘General Comment No 2’ (n 145) para 39. 265 ibid. CRPD Committee, ‘Concluding Observations on the Initial Report of Armenia’ CRPD/C/ARM/CO/1 (8 May 2017) para 41; CRPD Committee, ‘Concluding Observations on the Initial Report of Brazil’ CRPD/ C/BRA/CO/1 (29 September 2015) para 44, 45; CRPD Committee, ‘Concluding Observations on the Initial Report of Jordan’ CRPD/C/JOR/CO/1 (15 May 2017) para 45. 267 ‘Urgently implement measures to improve the accessibility of schools and all teaching materials, including the provision of textbooks in Braille and sign language interpreters, and ensure that such materials are used from the start of education’; in CRPD Committee, ‘Concluding Observations on the Initial Report of Guatemala’ CRPD/C/GTM/CO/1 (15 May 2017) para 60 (c); see also CRPD Committee, ‘Concluding Observations on the Initial Report of Jordan’ CRPD/C/JOR/CO/1 (30 September 2016) para 45; CRPD Committee, ‘Concluding Observations on the Initial Report of Costa Rica CRPD/C/CRI/CO/1 (12 May 2014) para 46. 268 CRPD Committee, ‘Concluding Observations on the Initial Report of Gabon’ CRPD/C/GAB/CO/1 (2 October 2015) para 52. 269 ‘The Committee is concerned about pupils with disabilities who do not have access to public transport in rural areas without reimbursement for other means of transport being covered’; in CRPD Committee, ‘Concluding Observations on the Initial Report of J Mauritius’ CRPD/ C/ MUS/ CO/ 1 (30 September 2015) para 33. 270 CRPD Committee, ‘Concluding Observations on the Initial Report of Jordan’ CRPD/C/JOR/CO/1 (15 May 2017) para 45. 271 CRPD Committee, ‘Concluding Observations on the Initial Report of Ukraine’ CRPD/C/UKR/CO/ 1 (2 October 2015) para 44. 264 266
anastasiou, gregory, and kauffman
698
Education
5.2 Environments which Maximize Academic and Social Development for Students with Sensory Disabilities Paragraph 3 has been seen as an exception to the general spirit of inclusive education promoted by art. 24.272 For example, de Beco stated that the CRPD makes ‘inclusive education the principle and special education the exception’.273 The key phrase in paragraph 3(c) ‘environments which maximize academic and social development’ tied to other phrases with similar connotations such as the education of PWD, ‘in particular children, who are blind, deaf or deaf-blind’, ‘delivered in the most appropriate languages and modes and means of communication for the individual persons’ converge in such an interpretation. As has been already analysed, influential disability organizations such the International Disability Caucus (IDC), the WFD, the World Blind Union, and the World Federation of the Deaf- Blind defended special education for persons with sensory and/or severe communication impairments. Especially for the WFD ‘inclusion as a simple placement in a regular school without meaningful interaction with classmates and professionals at all times is tantamount to exclusion of the Deaf learner from education and society. In such environments, the Deaf child is physically present but may be mentally and socially absent.’274
5.3 Appropriate Measures—Facilitating Learning Paragraphs 3 and 4 overlap and emphasize appropriate measures for operationalizing the terms effective education and individualized support included in sub-paragraphs 2(d) and 2(e), respectively. Unlike the individualized supports themselves and reasonable accommodations, which are dependent on the needs of individual students, these appropriate measures are intended to be system-wide changes that serve as a foundation upon which individualized supports can be provided in an effective way. These measures should be woven throughout and become embedded facets of the whole education system, irrespective of the needs of any particular student. Paragraph 3 emphasizes ‘appropriate measures’ for facilitating learning, such as ‘appropriate augmentative and alternative modes, means and formats of communication, educational techniques and materials to support persons with disabilities’. Though important, these measures include only a sampling of the research-based methods that PWD frequently need to participate effectively in a general education classroom. Very specific methods, such as co-teaching or cooperative teaching, accessible curricula and alternative instructional strategies, and collaborative consultation275 are not mentioned in paragraph 3. While the CRPD Committee once mentioned team teaching, it did not offer further clarification or refer to special teachers’ agency.276 This is a critical omission because specialized inclusive strategies such as co-teaching 277 that 272 de Beco, ‘The Right to Inclusive Education According to Article 24’ (n 76); Valentina Della Fina, ‘Article 24 [Education]’ in Della Fina, Cera and Palmisano (eds), The United Nations Convention on the Rights of Persons with Disabilities (Springer 2017) 439–70. 273 de Beco (n 77) 274. 274 Seventh Session of the Ad Hoc Committee: ‘Article 24’, available at: ; see also WFD (n 194). 275 Daniel P Hallahan, James M Kauffman, and Paige C Pullen, Exceptional Learners: An Introduction to Special Education (14th edn, Pearson 2018). 276 CRPD Committee, ‘General Comment No 4’ (n 5) para 70. 277 Co-teaching is defined as service delivery model involving special and general education teachers who deliver instruction to students with or without special educational needs attending general classroom; see Sara C Cook, Kimberly A McDuffie-Landrum, Linda Oshita, and Bryan G Cook, ‘Co-teaching for Students
anastasiou, gregory, and kauffman
Article 24
699
involve extra resources and extra teaching staff—typically a special education teacher— cannot be achieved without administrative support. In addition, paragraph 3 includes a clause regarding ‘facilitating peer support and mentoring’, which may refer to peer- mediated instruction or peer tutoring, a research-based instructional strategy to enhance inclusion.278 The CRPD Committee subsequently mentioned peer tutoring specifically in the context of learners with social communication difficulties and has otherwise used the terms peer support and peer mentoring but without many further details.279 Notably, both paragraph 3 and the CRPD Committee remain silent on assessment adaptations and/or curricular adaptations (eg alternate goals, time/schedule facilities, environment, or setting) that PWD routinely receive in special and inclusive education settings, especially in high-income countries. Recently, the CRPD Committee addressed the issue of the assessment adaptations but without proceeding in detail.280 Explicit references to functional curriculum and some description of assessment accommodations could be considered goals for low-income countries to achieve gradually.
5.4 Narrow View of Appropriate Measures Paragraph 3’s conception of appropriate measures seems to be limited to a few specific pedagogical strategies, but it does not address the substance and process of universal whole-school and whole-system transformation that would be necessary to make the general education system a totally supportive environment for PWD and thereby maximize the number of PWD who can meaningfully benefit from inclusive education. After ratification, the CRPD Committee tried to remedy this lack of emphasis by clarifying and describing systemic features of inclusive education such as: (a) a whole systems approach, (b) whole educational environment, (c) whole person approach, (d) respect for and value of diversity, (e) learning-friendly environment, and (f ) effective transitions.281 However, positive systemic change in education is a dynamic, multi-level and non-uniform structural process that is not performed in a political vacuum.282 It is worthwhile to consider that while many nations have witnessed transformations in school and system-wide culture (eg increased disability awareness, decreased bullying and harassment, etc) the diffusion of this shift is uneven,283 both among and within countries,284 and even in developed nations significant gaps remain.285 In our view, the recognition of the distinct organizational role of subsystems (different tiers or levels of intensive support, including with Disabilities: A Critical and Updated Analysis of the Empirical Literature’ in James M Kauffman, Daniel P Hallahan, and Paige C Pullen (eds), Handbook of Special Education (2nd edn, Routledge 2017) 233–48; Marilyn Penovich Friend, Lynne Cook, Interactions: Collaboration Skills for School Professionals (7th edn, Allyn and Bacon 2012). 278 eg Donald M Stenhoff and Benjamin Lignugaris/Kraft, ‘A Review of the Effects of Peer Tutoring on Students with Mild Disabilities in Secondary Settings’ (2007) 74 Exceptional Children 8–30. 279 CRPD Committee, ‘General Comment No 4’ (n 5) paras 34, 53, 70. 280 281 ibid paras 11, 25, 34, and 72. ibid para 12 pp 4–6. 282 eg see Cole et al, Helping Traumatized Children Learn Vol 2 (Massachusetts Advocates for Children 2013) (describing a whole-school inquiry-based action planning process for creating trauma-sensitive school cultures and the system-wide policy conditions that should be in place to facilitate this school-based process). 283 Ametepee and Anastasiou (n 4). 284 ibid; Dimitris Anastasiou, Paul L Morgan, George Farkas, and Andrew L Wiley, ‘Minority Disproportionate Representation in Special Education: Politics and Evidence, Issues and Implications’ in James M Kauffman, Daniel P Hallahan, and Paige C Pullen (eds), Handbook of Special Education (2nd edn, Routledge 2017) 911–23. 285 Anastasiou, Kauffman, and Di Nuovo (n 4).
anastasiou, gregory, and kauffman
700
Education
the special education subsystem)286 and mechanisms of systemic change (eg individualized education planning, special education teachers’ agency, whole-school culture change, structural policy reform) are important to sustainable development of a substantial and effective inclusive education.287 The lack of explicit reference to these features in the text of article 24 itself (as opposed to in subsequent commentary) is a missed opportunity for inclusive education and for PWD.
6. Paragraph 4 6.1 Appropriate Measures—Teacher Training Teacher employment and training is the main subject of paragraph 4. Specifically, this paragraph refers to the need for employing teachers ‘who are qualified in sign language and/or Braille’, and training professionals and staff who work at all levels of education. Moreover, it specifies the emphasis that should be given in teacher training to ‘disability awareness and the use of appropriate augmentative and alternative modes, means and formats of communication, educational techniques and materials’. We have already analysed the nature of those tools and means of education. In addition, paragraph 4 emphasizes that the teaching workforce should include PWD. The CRPD Committee argued that ‘[t]heir presence will serve to promote equal rights for persons with disabilities to enter the teaching profession, bring unique expertise and skills into learning environments, contribute to breaking down barriers and serve as important role models’.288 Undoubtedly, an increase of PWD in the education workforce is necessary for all the aforementioned reasons, and can be a powerful foundation for inclusive education. But at the same time, there is a total lack of reference to special education teachers in the text of the Convention itself, as well as in General Comment No 4 of the CRPD Committee and, thus far, in any other document produced by the Committee.289 This might seem unusual to the education world. It is noteworthy that fervent inclusionist educators have taken a very different approach, preferring a model that involves blending of professional expertise, in which a general teacher and a special education teacher, or other specialist, jointly instruct students in a general education classroom. This is one of the touchstones of inclusive practice.290 One could say that the CRPD Committee does not adequately value the professional expertise of special education teachers, or that it merely wanted to avoid any reference to special educators, perhaps because such a reference would imply the endorsement of a special needs perspective. But the failure to ensure the inclusion of special education teachers in the educational setting remains questionable and largely unwelcome within the education community, because it gives the impression that general education teachers alone can effectively accommodate the special education needs of students with disabilities. The failure to mention special education teachers tends to align article 24 with many neoliberal education policies, 286 Cannon, Gregory, and Waterstone ‘A Solution Hiding in Plain Sight’ (n 82); Kauffman, Anastasiou, Badar, Travers, and Wiley (n 4). 287 288 ibid. CRPD Committee, General Comment No 4 (n 5) para 36. 289 We have reviewed the Concluding Observations documents until December 2017 without finding any reference to special education teachers. 290 Marilyn Friend and Lynne Cook, Interactions: Collaboration Skills for School Professionals (7th edn, Pearson 2013) 161.
anastasiou, gregory, and kauffman
Article 24
701
which have long pursued the reduction of the cost of public education and the commodification and privatization of education services.291 The lack of reference to special educators might lead the Committee to adopt a one-sided self-empowerment approach to the matter of teaching agency by emphasizing the role of teachers with disabilities. A self-empowerment approach to education is a common theme in gender or race equality, particularly where the focus is preparing students for active participation in society. Improved access to social capital292 builds empowerment networks, and can promote psychological empowerment, social empowerment, and political empowerment.293 However, teaching functions as much more than just a community participation process, a social network or a power dynamic within the classroom. Teaching includes much more than good intentions, affection, and empathy;294 specifically, teaching, in its core, is professional expertise that maximizes learners’ knowledge, skills and opportunities, and a major and irreplaceable contributor to learning.295 To put it simply, students with disabilities need teachers with substantial training in intensive, systematic, and specialized academic and behavioural methods, such as those of special education teachers, simply because they need to acquire the knowledge, skills, and experiences necessary to develop their potential and transition successfully to adulthood.296 In addition, students with disabilities need dedicated professionals who inter alia play an advocacy role in diverse schools, which, by design, accommodate multiple diverse needs and interests. Special education teachers more than any other agent in schools are positioned to play such an advocacy role in schools, ensuring and protecting the resources devoted—by law—to students with disabilities, regardless of setting.297 The CRPD Committee has expressed concerns that there is a lack of training of teachers and administrators, and lack of teachers who use sign language.298 As it is noted ‘[w]ithout sufficient teachers with sign language skills, deaf children are at a significant disadvantage’.299
291 Kauffman, ‘The Regular Education Initiative as Reagan- Bush Education Policy’ (n 34); see also Anastasiou and Kauffman, ‘When Special Education Goes to the Marketplace’ (n 34). 292 In Bourdieu’s theory, for example, the term ‘social capital’ refers to the resources that individuals or groups can gain through their long-standing networks of friends, acquaintances, and other mutual social connections. As such, social capital offers a distinctive resource from financial capital and cultural capital. See in Pierre Bourdieu, Distinction A Social Critique of the Judgement of Taste (Harvard University Press 1984) 114–256. 293 John Friedman, Empowerment: The Politics of Alternative Development (Blackwell 1992) 115–19; Robert Weissberg, The Politics of Empowerment (Praeger 1999). 294 John Hattie and Gregory Yates, Visible Learning and the Science of How We Learn (Routledge 2014). 295 ibid; John Hattie, Visible Learning for Teachers: Maximizing Impact on Learning Achievement (Routledge 2012). 296 Paige C Pullen and Daniel P Hallahan, ‘What Is Special Education Instruction’ in Barbara Bateman, John Wills Lloyd, and Melody Tankersley (eds), Enduring Issues in Special Education (Routledge 2015) 37–50; James M Kauffman, ‘Why We Should Have Special Education’ in ibid 398–408. 297 Bryan G Cook, Melvyn I Semmel, and Michael M Gerber, ‘Attitudes of Principals and Special Education Teachers Toward the Inclusion of Students with Mild Disabilities: Critical Differences of Opinion’ (1999) 20 Remedial and Special Education 199–209, 256. 298 CRPD Committee, ‘Concluding Observations on the Initial Report of Austria’ CRPD/C/AUT/CO/1 (30 September 2013) para 42; CRPD Committee, ‘Concluding Observations on the Initial Report of Tunisia’ CRPD/C/TUN/CO/1 (13 May 2011) para 31. 299 CRPD Committee, ‘Concluding Observations on the Initial Report of Austria’ CRPD/C/AUT/CO/1 (30 September 2013) para 42.
anastasiou, gregory, and kauffman
702
Education
6.2 Prioritizing Certain Disabilities Both paragraphs 3 and 4 contain lists of appropriate measures that can be seen as primarily addressing the needs of students with blindness, deafness, and communication disorders.300 Namely, the paragraphs obligate states parties to develop systems that facilitate the learning of Braille and sign language and that include alternative means of communication, use of alternative script, augmentation, and alternative modes, and orientation, and mobility skills. However, article 24 remains silent on the specific learning needs of students with other disabilities, such as mind-related disabilities, and acknowledges only a fragment of the spectrum and continuum of atypical learning needs with which today’s special education system struggles to cope.301 To make a comparison, the non-binding Rule 6 of the SREOPD has been more generous for persons facing mind-related challenges (eg intellectual disabilities, severe psychosocial disorders, learning disabilities).302 A description of the curriculum flexibility and adaptation was needed to address the needs of students with moderate and severe/profound disabilities, but also those of students with specific learning needs. The term functional curriculum, a kind of substitute curriculum, has been routinely used to accommodate certain special needs (eg personal care and hygiene, health and safety, household management, community participation, money management, travel, non-verbal communication, functional academics).303 Such instruction would have the potential to enhance the autonomy and independence of persons with moderate to severe or profound intellectual disabilities and other developmental disorders. To summarize, the system-wide appropriate measures included in both paragraphs 3 and 4 are critical to ensuring a meaningful right to education for PWD, particularly where the concept of inclusive education is prioritized. However, taken together, these paragraphs effectively reduce the number of students who will be able to benefit meaningfully from inclusive education in three ways: 1) they list only some of the evidenced- based instructional strategies that the field considers to be best practices for delivering specialized instruction in inclusive settings; 2) they represent a narrow view of the types of appropriate measures that would need to be woven throughout the system, neglecting to reference whole-school, whole-system culture transformation; and 3) they single out particular appropriate measures that are necessary for the effective education of students with certain disability types (namely, sensory impairments) without specifying the particular needs of students with other disabilities. While appropriate measures for facilitating
300 The CRPD Committee also refers to appropriate measures regarding students with blindness and partially sighted, deafness and hard of hearing, and communication disorders; ‘General Comment No 4’ (n 5) para 34. 301 As a case in point, the IDC, the biggest organization during the negotiations of the drafting process, at one stage, included fifty-nine international, regional, and national disability organizations from all regions of the world. However, its composition was mainly country-or region-based, and with a significant over- representation of people with sensory and physical disabilities. This, as it has already analysed, seems to have been an impact on the negotiations of Art 24; eg several proposals submitted by the IDA were defended special education as an option for persons with sensory and communication impairments; see IDC, ‘Chairman’s Text as Amended by the International Disability Caucus’ (n 46). 302 The Standard Rules UNGA A/RES/48/96 (n 18). 303 Michael Bender, Peter J Valletutti, and Carol Ann Baglin, A Functional Assessment and Curriculum Vol 1 (4th edn, Pro-Ed 2008).
anastasiou, gregory, and kauffman
Article 24
703
learning and teacher training are both critical, there are many more areas that would need to be addressed in order to transform the mainstream education system so that it could meaningfully include as many PWD as possible.
7. Paragraph 5: Tertiary Education and Life-Long Learning The concluding paragraph 5 addresses access to general tertiary education, vocational training, adult education and lifelong learning. The paragraph seems to be complementary to sub-paragraph 2(b) which provides for ‘access to an inclusive, quality and free primary education and secondary education’ but does not refer to tertiary education. The main function of paragraph 5 is to operationalize the concept of ‘lifelong learning’ included in paragraph 1. Specifically, it ensures that the right to education includes the third and higher level of education. This is not unprecedented, as domestic laws in several countries (eg the USA, the UK, Canada, Israel304) include such provisions.305 The clause ‘without discrimination and on an equal basis with others’ emphasizes the provision’s anti-discrimination dimension. Paragraph 5 definitely extends ‘reasonable accommodation’ in sub-paragraph 2(c) to tertiary education, which is prescribed as the means to the end of a ‘general tertiary education’. The paragraph’s definition of tertiary education is a broad one, including non-traditional educational spaces such as vocational training, adult education and lifelong learning, thus providing a legal basis for increasing opportunities for employment, especially for people with physical and sensory disabilities. Formal learning, non-formal, and informal learning are covered under the concept of lifelong learning, which also encompasses all the ages (‘from cradle to grave’).306 The inclusion of lifelong learning is a significant divergence between CRPD and prior international conventions and declarations. Gravani and Zarifis have extensively analysed lifelong learning as a European Union policy initiative launched with the ‘Memorandum on Lifelong Learning’ in 2000. They concluded that there is no evidence that it is beneficial to the degree the European Commission might have expected. The authors appraised that ‘[d]espite the strong rhetoric on promoting the idea of lifelong learning in Europe and after over a decade of ongoing adjustments, relevant European Union policies have neither responded to nor have they fulfilled any concrete social demand or a coherent attitude towards learning (as a mode of development) amongst Europeans’.307 Despite the poor operationalization of the concept, a concrete form of lifelong learning has been the Second-Chance Schools (SCSs) in Europe, which is a specific type of basic education for adults who have not completed their basic education (elementary and lower secondary
304 Dalia Sachs and Naomi Schreuer, ‘Inclusion of Students with Disabilities in Higher Education: Performance and Participation in Student’s Experiences’ (2011) 31 Disability Studies Quarterly. 305 Practically every US post-secondary education unit is subject to the ADA and/or Section 504 of the Rehabilitation Act of 1973, which have similar anti-discrimination requirements that apply to any entity receiving federal financial assistance, which in practice includes virtually all institutions of higher education—see 42 USC § 12101 et seq; 29 USC § 794. The UK Special Educational Needs and Discrimination Act (SENDA) 2001, amended the 1995 Disability Discrimination Act, outlawed discrimination against individual with disabilities in education, training and other related services. 306 Della Fina, ‘Article 24 [Education]’ (n 272) 457. 307 Maria N Gravani and George K Zarifis, ‘Introduction’ in Gravani and Zarifis (eds), Challenging the European Area of Lifelong Learning (Springer 2014) 1.
anastasiou, gregory, and kauffman
704
Education
education) and consequently lack formal paper qualifications.308 It also seems that even a universal lifelong learning policy, such as the SCSs, can address learning needs of PWD to some extent. For example, a retrospective study in the context of SCSs in Greece found that gender discrimination and learning disabilities were the main reasons of dropping- out of basic education. Specifically, 67 per cent of males who attended SCSs had dropped- out as adolescents because of their (non-identified) learning difficulties and externalizing behaviour problems.309 However, another study suggested that non-specialized teaching methods and materials can make SCSs ineffective in developing functional writing skills, despite the fact that they enhanced considerably their writing self-efficacy beliefs, and boosted feelings of self-esteem for many low-literate adult learners. This atypical discordance between self-efficacy and writing performance among low-literate adult learners highlights the crucial issue of specially designed instruction that meets their unusual learning needs, beyond availability and accessibility.310 Finally, limited accessibility in tertiary education311 or restricted access to certain fields of study and professional degrees for students with particular disabilities has been observed.312 Some states (eg Portugal) have a special quota for the admission of students with disabilities to public universities, but this does not necessarily mean that universities have regulated the support that should provide to those students.313 Therefore, states members have been urged to introduce ‘legislation regulations on the access of students with disabilities to higher education and vocational training . . . while providing reasonable accommodation and the required support services’.314
308 European Commission, Directorate-General for Education and Culture, Report on Second Chance Schools (Author 2001). 309 Domna Michail and Dimitris Anastasiou, ‘Gender Discrimination and Learning Disabilities as the Main Reasons of Dropping-out from Basic Education: A Retrospective Study in the Context of Second-Chance Schools’ in Peter Cunningham and Nathan Fretwell (eds), Lifelong Learning and Active Citizenship, Proceedings of the Twelfth Conference of the Children’s Identity and Citizenship in Europe Academic Network (CiCe 2010) 435–44. 310 Dimitris Anastasiou and Domna Michail, ‘Exploring Discordance Between Self-Efficacy and Writing Performance among Low- Literate Adult Students’ (2013) 11 Learning Disabilities: A Contemporary Journal 53–87. 311 CRPD Committee, ‘Concluding Observations on the Initial Report of Bosnia and Herzegovina’ CRPD/ C/BIH/CO/1 (2 May 2017) para 42(b). 312 CRPD Committee, ‘Concluding Observations on the Initial Report of Portugal’ CRPD/C/PRT/CO/1 (20 May 2016) para 48. 313 ibid para 48. 314 ibid para 49.
anastasiou, gregory, and kauffman
Article 25 Health States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health- related rehabilitation. In particular, States Parties shall: a) Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes; b) Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons;
c) Provide these health services as close as possible to people’s own communities, including in rural areas; d) Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care; e) Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, which shall be provided in a fair and reasonable manner; f ) Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.
1. Introduction 2. Background and Travaux Préparatoires 3. Article 25 (Chapeau) 3.1 Reasonable Accommodation 3.2 Health Services that Are Gender-Sensitive 4. Paragraph (a) 5. Paragraph (b) 6. Paragraph (c) 7. Paragraph (d) 7.1 Free and Informed Consent 7.2 The Interaction between Article 12 and Article 25 7.3 Human Rights Training of Health Professionals 8. Paragraph (e) 9. Paragraph (f)
706 711 716 717 718 719 722 723 724 724 727 730 731 732
weller
706
Health
1. Introduction This chapter considers article 25 CRPD. The CRPD sets out a comprehensive framework for realizing the human rights of people with disabilities including the right to health.1 Article 25 refers to one dimension of the right to health: access to health services. The scope of article 25 is best understood in the context of the broader human right to health in international human rights law. Health is a variable human attribute dependent upon individual, social, political and material conditions.2 In international human rights law, the ‘right to the highest attainable standard of health and mental health’ (referred to as the right to health) protects the right to access the various conditions that enable human health.3 It is an expansive right encompassing ‘a wide range of socio-economic factors that promote conditions in which people can lead a healthy life’.4 It includes the freedom to control one’s own body, access to timely and appropriate health care, the prevention, treatment and control of diseases, access to systems of health protection, and provision for the underlying and social determinants of health.5 The underlying determinants of health include ‘access to safe and potable water and adequate sanitation, safe and healthy working conditions, and a healthy environment’.6 The breadth and depth of the right to health means it is closely related to and dependent upon the realisation of other human rights,7 such as the right to food, housing, work, education, dignity, life, non-discrimination, equality, the prohibition against torture, privacy, access to information, and the freedoms of association, assembly, and movement.8 The expansive nature of the right to health means that its exact contours are difficult to define. Nevertheless, the right to health is regarded as an embedded norm under international law that carries ‘considerable legal weight’.9 The CRPD reiterates
1 Convention on the Rights of Persons with Disabilities, opened for signature 13 December 2006, 46 ILM 433 (entered into force 3 May 2008) Art 25 ‘CRPD’. 2 John Eyles and Kevin J Woods, The Social Geography of Medicine and Health (Routledge 2014); Jennifer Prah Ruger, ‘Health Capability: Conceptualization and Operationalization’ (2010) 100 American Journal of Public Health 41. 3 International Covenant on Economic, Social and Cultural Rights, 16 December 1966, 993 UNTS 3 (entered into force 3 January 1976) Art 12 (‘ICESCR’); see also Brigit Toebes, The Right to Health as a Human Right in International Law (Hart Publishing 1999) 27–85; see Paul Hunt, ‘The Right of Everyone to the Enjoyment of the Highest Attainable Standards of Physical and Mental Health, Report of the Special Rapporteur, Paul Hunt, Submitted in Accordance with Commission Resolution 2002/31’ UN Doc E/CN4/2003/58 (13 February 2003) annex l; Judith Asher, The Right to Health: A Resource Manual for NGOs (Martinus Nijhoff 2010); Padmini Murthy and Clyde Lanford Smith, Women’s Global Health and Human Rights (Jones and Bartlett Learning 2010); Eibe Riedel, Gilles Giacca, and Christopher Golay, Economic Social and Cultural Rights in International Law (OUP 2014); John Tobin, The Right to Health in International Law (OUP 2012); Brigit Toebes, Rhonda Ferguson, Milan Markovic, Obiajulu Nnamuchi, The Right to Health: A Multi-Country Study of the Law, Policy and Practice (Springer 2014); Jonathon Wolf, The Human Right to Health (Norton 2013); Jose Zuniga Stephen Marks and Lawrence Gostin (eds), Advancing the Human Right to Health (OUP 2013). 4 UN Committee on Economic, Social and Cultural Rights (CESCR), ‘General Comment No 14: The Right to the Highest Attainable Standard of Health (Art 12 of the ICESCR)’ UN Doc E/C12/2000/4 (11 August 2000) para 4. 5 Michael Ashley Stein, Janet E Lord, and Dorothy Weiss Tolchin, ‘Equal Access to Health Care Under the UN Disability Rights Convention’ in Rosamond Rhodes, Margaret P Battin, and Anita Silvers (eds), Medicine and Social Justice: Essays on the Distribution of Health Care (OUP 2012) 245. 6 7 CESCR General Comment No 1, para 4. CESCR General Comment No 14. 8 ibid para 3. 9 Brigit Toebes, ‘Introduction’ in Brigit Toebes, Rhonda Ferguson, Milan M Markovic, and Obiajulu Nnamuchi (eds), The Right to Health: A Multi-Country Study of Law, Policy and Practice (Springer 2014) xiii; see International Convention on the Elimination of All Forms of Racial Discrimination, opened for signature 21
weller
Article 25
707
the ‘right to the enjoyment of the highest attainable standard of health’ in the preamble to article 25, referring to attainment of the right to health ‘without discrimination on the basis of disability’.10 The specific content of the article concerns access to health care services for people with disabilities. The right to health in international law has informed the structure and content of the CRPD. This means that the interpretation of article 25 should take account of the CRPD’s overarching conceptual framework. The CRPD approaches the task of extending the human rights framework to people with disabilities by recognizing the historical disadvantage and embedded discrimination experienced by them. It was not until the documentation of widespread human rights violations experienced by people with disabilities during the World Program of Action and Decade of Rights of People with Disability (1982–92) and subsequent scholarship by the international disability movement concerning health and disability, that the articulation of the human rights model adopted in the CRPD emerged.11 The human rights model in the CRPD responds to the experience of people with disabilities with a clear emphasis on social inclusion and equal access to the social, environmental and material determinants of health. At the centre of the CRPD approach is the recognition that discrimination on the basis of disability ‘has been shaped, reinforced and perpetuated by the idea that disabling conditions represent abnormality’.12 Traditionally, disability has been viewed as a ‘pathological defect’ rather than a measure of human diversity.13 The consequent attitude that the lives of people with disability have less value than other lives underpins the denial of,
December 1965, 660 UNTS 195 art 5(iv) (emphasizes the non-discriminatory ‘right to public health, medical care, social security and social services’); Convention on the Elimination of Discrimination Against Women, opened for signature 18 December 1979, 1249 UNTS 13 (entered into force 9 March 1981) (‘CEDAW’) Art 12 emphasizes the special needs of women particularly in relation to reproductive, maternity, and postnatal services; Convention on the Rights of the Child, opened for signature 20 November 1989, 1577 UNTS 3 (‘CRC’) Art 24 contains a comprehensive elaboration of the right to health care with a general and public health focus; Committee on the Rights of the Child, ‘General Comment No 15 (2013) on the Right of the Child to the Enjoyment of the Highest Attainable Standard of Health (art 24)’ UN Doc CRC/C/GC/15 (17 April 2013). Several regional human rights instruments also recognize the right to health, such as the European Social Charter (revised), opened for signature 3 May 1996, ETS 163 (Art 11), the African Charter on Human and Peoples’ Rights, adopted 27 June 1981, entered into force 21 October 1986 (1982) 21 ILM 59 (Art 16) and the Additional Protocol to the American Convention on Human Rights in the Area of Economic, Social and Cultural Rights, entered into force 16 November 1999, OAS Treaty Series No 69 (1988) (Art 10). Art 25 CRPD. Bengt Lindqvist, ‘Final Report of the Special Rapporteur of the Commission for Social Development on Monitoring the Implementation of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities on his Second Mission 1997–2000’, UN Doc E/CN.5/2000/3 (8–17 February 2000) annex; Erica- Irene A Daes, Special Rapporteur of the Sub-Commission on Prevention of Discrimination and Protection of Minorities, ‘Principles, Guidelines and Guarantees for the Protection of Persons Detained on Grounds of Mental Ill-Health or Suffering from Mental Disorder’, UN Doc E/CN4/Sub2/1993/17 (6 July 1993); Leandro Despouy, Special Rapporteur of the Sub-Commission on Prevention of Discrimination and Protection of Minorities, ‘Human Rights and Disability’ UN Doc E /CN4/Sub2/1991/31 (1991). Eric Rosenthal and Clarence J Sundram, ‘Recognizing Existing Rights and Crafting New Ones: Tools for Drafting Human Rights Instruments for People with Mental Disabilities’ in Stanley S Kerr, Lawrence O Gostin, and Harold Hongju Koh (eds), The Human Rights of Persons with Intellectual Disabilities (OUP 2003). Gerard Quinn and Theresia Degener, Human Rights and Disability: The Current Use and Future Potential of United Nations Human Rights Instruments in the Context of Disability (United Nations Publications 2002). 12 Janet E Lord, ‘Screened Out of Existence: The Convention on the Rights of Persons with Disabilities and Selective Screening Policies’ (2013) International Journal of Disability Community and Rehabilitation 12. 13 ibid. 10 11
weller
708
Health
and poor access to both health care and the underlying determinants of health.14 Poor access to the basic requirements for health compounds disability and is exacerbated by poverty, marginalization, and discrimination.15 When health care is provided, is it often limited or substandard.16 Moreover, a commonly reported experience is that health care for people with disabilities focuses on the person’s impairment to the exclusion of other necessary health services.17 This creates the paradoxical experience of having one’s health needs ignored at the same time as one is subject to sometimes unwanted medical intervention, correction, or experimentation.18 For those with psychosocial disabilities this may include involuntary institutionalization, and for women with disabilities, forced sterilization.19 The gender related health needs of women with disability in mainstream health care and in mental health care are notoriously overlooked.20 With respect to health, the goal of the CRPD is to rebalance distorted health frameworks built on discriminatory concepts and attitudes. The human rights model in the CRPD responds to the observation that despite the development of anti-discrimination laws in many nations, discrimination, segregation, and abuse against people with disabilities ‘continues in most, if not all, countries of the world’.21 Discrimination in the provision of health care is damaging to health. The experience of discrimination itself is damaging to health and mental wellbeing.22 The patterns of health disadvantage associated with disability are frequently overlooked, resulting in the inappropriate allocation of health resources. Counted at the individual level, fewer resources are allocated to people with disabilities than to similarly situated people who are non-disabled.23 Recent health research shows that people with disabilities continue to have unmet health needs on all counts.24 In developed and developing countries alike, access to appropriate health care unrelated to disability is a more tangible barrier to the achievement of health than the presence of an impairment or access to impairment-related 14 eg see Gloria L Krahn, Laura Hammond, and Anne Turner, ‘A Cascade of Disparities: Health and Health Care Access for People with Intellectual Disabilities’ (2006) 12 Mental Retardation and Developmental Disabilities Research Reviews 70. 15 Andrew Courtwright, ‘Justice, Stigma and the New Epidemiology of Health Disparities’ (2009) 23 Bioethics 90. 16 Lindqvist (n 11). 17 Jennifer Randall et al, ‘Stigma and Discrimination: Critical Human Rights Issues for Mental Health’ in Michael Dudley, Derrick M Silove, and Fran Gale (eds), Mental Health and Human Rights: Vision, Praxis, and Courage (OUP 2012) 113, refers to the concept of diagnostic overshadowing. See also Felicity Callard et al, ‘Chapter 9: Health, Health Care and the Right to Health’ in Felicity Callard et al (eds), Mental Illness, Discrimination and the Law: Fighting for Social Justice (Wiley Online Library 2012) 125. 18 19 Stein, Lord, and Tolchin (n 5) 246. ibid. 20 Penelope Weller, ‘The Contradictions of Gender: Women, Men and Violence in Mental Health Research—Policy, Law and Human Rights’ (2016) 25 Griffith Law Review 87. 21 Arlene S Kanter, ‘The United Nations Convention on the Rights of Persons with Disabilities and its Implications for the Rights of Elderly People Under International Law’ (2009) 25 Georgia State University Law Review 527, 548. 22 Lesley Chenoweth, ‘Violence and Women With Disabilities: Silence and Paradox’ (1996) 2 Violence Against Women 391. 23 Stein, Lord, and Tolchin (n 5) 246. 24 Rosalind Coleman, Louie Loppy, and Gijs Walraven ‘The Treatment Gap and Primary Health Care for People with Epilepsy in Rural Gambia’ (2002) 80 Bulletin of the World Health Organization 378; Kristi L Kirschner, Mary Lou Breslin, and Lisa I Iezzoni, ‘Structural Impairments that Limit Access to Health Care for Patients with Disabilities’ (2004) 297 JAMA Journal of the American Medical Association 1121; Paula Kersten et al, ‘Met and Unmet Needs Reported by Severely Disabled People in Southern England’ (2000) 22 Disability Rehabilitation 737; Malcolm MacLachlan and Leslie Swartz (eds), Disability and International Development: Towards Inclusive Global Health (Springer 2009).
weller
Article 25
709
health care.25 Poor access is exacerbated by age and gender. The elderly and infants with disabilities are more likely to be denied health care or the material requirements of life,26 while women and girls with disabilities are more likely to be denied access to health care that responds to the experience of sexual abuse, family life, fertility, reproduction, and maternity.27 The CRPD embraces the assumption that the lives of people with disabilities have equal value and dignity and on that basis are entitled to the equal allocation of resources. The human rights model in the CRPD is underpinned by the social model of disability.28 The social model of disability recognizes impairment as a characteristic of the person, while disability is construed as the damaging effect of a discriminatory environment. The social model of disability stems from a substantive critique of the medical model of health and illness.29 The medical model of health and illness is associated with the assumption that illness or deviance from the healthy norm, and hence disability, equates with inability, sickness, and dependence. Illness requires medical cure, deviance requires medical control and dependence requires charity. The medical model of health and illness therefore configures intervention, suppression of difference and paternalism as the primary response to people with disabilities.30 The social model of disability identifies discrimination as the primary mode of oppression. It disrupts the patterns set by the medical model, and seeks to dismantle the ubiquitous effects of medical dominance which are reflected in the structure of society, the organisation of physical space and the ethos of modern health provision. The social model of disability construes ‘disability’ as a product of social exclusion and marginalization, not an inherent characteristic of the person.31 Michael Ashley Stein and Janet Lord describe the social model of disability as the recognition that ‘factors exogenous to a disabled person’s own limitations determine the extent to which that individual will be able to function in a given setting’.32 By identifying the cause and effect of embedded social discrimination, the social model of disability provides a conceptual framework that enables the celebration of ‘capability and inclusion and ways to prevent and remove the attitudinal and structural barriers that prevent people with disabilities becoming members of our communities.’33 Tom Shakespeare has criticized the social model of disability for reducing the material limitations of disability to a simple ‘social construction’.34 Janet Lord points out that properly understood, the social model of disability does not deny the reality of impairment or
26 Randall (n 17). Kanter (n 21) 549. Henri Nkuepo, ‘Women with Disability: The Most Vulnerable Among the Vulnerable with Regard to Their Right to Health’ (2011) 12(3) ESR Review (Economic and Social Rights in South Africa) 6; Gary C Norman, ‘Basic Concepts, Commentary and Opportunities for Addressing Healthcare Inequality of Women with Disabilities’ (2012) 6 Health Law and Policy Brief 82. 28 Penelope Weller, ‘Right to Health—The Convention on the Rights of Persons with Disabilities (2010) 35 The Alternative Law Journal 66. 29 Quinn and Degener (n 11). 30 James Knight, ‘Models of Health’ in John Germov (ed), Second Opinion: An Introduction to Health Sociology (OUP 1998) 139; see also Anna Arstein-Kerslake and Eilionóir Flynn ‘The General Comment on Article 12 of the Convention on the Rights of Persons with Disabilities: A Roadmap for Equality Before the Law’ (2015 online) The International Journal of Human Rights 1. 31 Tom Shakespeare, ‘Nasty, Brutish, and Short? On the Predicament of Disability and Embodiment’ in Jerome E Bickenbach, Franziska Felder, and Barbara Schmitz (eds), Disability and the Good Human Life (Cambridge University Press 2013) 93. 32 33 Stein, Lord, and Tolchin (n 5) 246. Kanter (n 21) 572 cf Tom Shakespeare (n 31) 93. 34 Shakespeare (n 31) 93, 108. 25 27
weller
710
Health
its impact on an individual, but seeks to challenge ‘physical and social environments—and legal frameworks’ that exclude people with disability.35 In health, the social model confronts the limitations of current health care provision. In the CRPD the social model of disability demands that physical, social, and legal environments and frameworks are altered to ‘accommodate impairment as an anticipated incident of human diversity’.36 The social model of disability also denotes the CRPD’s close engagement with a notion of substantive equality.37 Sandra Fredman has developed the notion of substantive equality as a four dimensional concept that includes a distributive dimension (aimed at breaking the cycle of disadvantage); a recognition dimension (that promotes respect and dignity for all); a transformative dimension (that aims to accommodate difference and promote structural change) and a participative dimension (that recognizes social inclusion and political voice).38 With respect to the question of disability discrimination, substantive equality underpins a framework of respect for and accommodation of difference.39 The shift to substantive equality marks the culmination of a struggle toward the development of international standards relating to disability cognisant of the experience of people with disability.40 In short, the goal of the CRPD is to dismantle the discriminatory approach to health and health care that has dominated the disability sector. In its place, principles of inclusion and access frame the objective of enabling people with disabilities to engage with health and health care in a way that is commensurate with their health needs.41 Article 25 articulates the CRPD stance with respect to health related services. The CRPD demands a place for people with disabilities in debates about health and health care, and an opportunity for people with disabilities to define and redefine the terms of their own engagement with modern health care. The following account of article 25 includes an analysis of the interaction between articles 25 and 12 CRPD. Article 12 is engaged by the obligation in article 25(d) CRPD to provide medical services on the basis of free and informed consent. The principle of free and informed consent has featured in the jurisprudence of the CRPD Committee with respect to psychiatric treatment under article 14 (liberty and security of person), article 15 (freedom from torture or cruel, inhuman or degrading treatment or punishment) and article 17 (physical and mental integrity).42 The notion of free and informed consent has 35 Janet E Lord, ‘Screened Out of Existence: The Convention on the Rights of Persons with Disabilities and Selective Screening Policies’ (2013) International Journal of Disability Community and Rehabilitation 12. 36 ibid. 37 See Sandra Fredman, Discrimination Law (2nd edn, OUP 2011) 25; Arstein-Kerslake and Flynn (n 30) 3. 38 Fredman (n 37) 25. 39 Henri-Paul Normandin, Statement by Ambassador Henri-Paul Normandin Deputy Permanent Representative of Canada to the United Nations to the 61st session of the United Nations General Assembly on the Convention of Persons with Disabilities, available in: ; Fredman (n 37) 25. 40 eg compare the ‘Declaration on the Rights of Mentally Retarded Persons’, UNGA Res 2856 (XXVI) (20 December 1971); ‘Declaration on the Rights of Disabled Persons’, UNGA res 3447 (XXX) (9 December 1975); ‘United Nations Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care’, UNGA Res 46/119 (17 December 1991) (MI Principles). 41 Stein, Lord, and Tolchin (n 5) 245. 42 CRPD Committee, ‘Concluding Observations on the Initial Report of Sweden’ UN Doc CRPD/C/ SWE/CO/1 (12 May 2014) para 38; CRPD Committee, ‘Concluding Observations on the Initial Report of El Salvador’ UN Doc CRPD/C/SLV/CO/1 (8 October 2013) paras 32, 51; CRPD Committee, ‘Concluding Observations on the Initial Report of Mexico’ UN Doc CRPD/C/MEX/CO/1 (27 October 2014) para 50; CRPD Committee, ‘Concluding Observations on the Initial Report of Ecuador’ UN Doc CRPD/C/ECU/ CO/1 (27 October 2014) para 29; CRPD Committee, ‘Concluding Observations on the Initial Report of
weller
Article 25
711
further relevance for article 16 (freedom from exploitation, violence, and abuse); article 22 (respect for privacy) and article 23 (respect for home and family). The conceptualisation of informed consent in the disability context is important because voluntariness is a critical component of human interactions that might otherwise be regarded as a violation of human rights. Informed consent in article 25 speaks directly to the first general principle of the CRPD: Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons.43
Article 25(d) CRPD has particular relevance for the full articulation of a range of provisions in the CRPD, including article 6 (women with disabilities); article 7 (children with disabilities); article 9 (accessibility); article 10 (right to life); article 17 (protecting bodily and mental integrity) and; article 26 (habilitation and rehabilitation). Taken as whole, article 25 is relevant for the enjoyment of all the rights set out in the CRPD.
2. Background and Travaux Préparatoires The inclusion of the right to health in the CRPD was assumed from the outset.44 In the travaux préparatoires it was clear that states parties saw recognition of the right to health as closely linked with article 12 ICESCR.45 Article 12 provides the basis for binding state party obligations with respect to the right to health. The right to health in international human rights law, and the interpretation given to the scope of that right by states parties to the CRPD, provides the critical backdrop for understanding article 25. Recognition of health as a human right first appeared in article 25 UDHR.46 Article 25 referred to ‘conditions adequate to support health: access to food, clothing, housing, basic mental health’. The ‘right to the highest attainable standard of health and mental health’ was reiterated in article 12 ICESCR.47 Article 12(2) ICESCR defines the right to health in terms of the traditional pillars of ‘social medicine’: infant mortality, industrial hygiene, disease containment, and the provision of medical services.48 The four pillars provided the basic framework for the contemporary interpretation of the right to health. A contemporary understanding of the right to health is contained in the authoritative comments of the Committee on Economic Social and Cultural Rights (CESCR).49 General Comment 5 (1994) clarifies the general application of the ICESCR to people with disabilities.50 It refers to the United Nations Standard Rules on the Equalization of Opportunities for Persons with Disabilities, which was the principal instrument guiding state action for people with disabilities at that time.51 The Standard Rules highlighted the New Zealand’ UN Doc CRPD/C/NZL/CO/1 (31 October 2014) para 30; CRPD Committee, ‘Concluding Observations on the Initial Report of Qatar’ UN Doc CRPD/C/QAT/CO/1 (2 October 2015) para 45; CRPD Committee, ‘Concluding Observations on the Initial Report of Gabon’ UN Doc CRPD/C/GAB/CO/ 1 (2 October 2015) para 56. 44 45 Art 3(a) CRPD. Quinn and Degener (n 11). ICESCR. Universal Declaration of Human Rights, UNGA Res 217A(III) (10 December 1948). 47 48 49 ICESCR. Courtwright (n 15) 92. ICESCR. 50 CESCR, ‘General Comment No 5: Persons with Disabilities’ UN Doc E/1995/22 (9 December 1994). 51 Standard Rules on the Equalization of Opportunities for Persons with Disabilities, UNGA Res 48/96 (20 December 1993). 43 46
weller
712
Health
significance of the accessibility of the physical environment, transport, information, and communication for the equalisation of opportunities for persons with disabilities. With respect to the right to health General Comment 5 states: 34. According to the Standard Rules, ‘States should ensure that persons with disabilities, particularly infants and children, are provided with the same level of medical care within the same system as other members of society’. The right to physical and mental health also implies the right to have access to, and to benefit from, those medical and social services—including orthopaedic devices— which enable persons with disabilities to become independent, prevent further disabilities and support their social integration. Similarly, such persons should be provided with rehabilitation services which would enable them ‘to reach and sustain their optimum level of independence and functioning’. All such services should be provided in such a way that the persons concerned are able to maintain full respect for their rights and dignity.52
General Comment 14 (2000) by the Committee on Economic, Social and Cultural Rights provides a contemporary account of the right to health and expands the disability focus of General Comment 5.53 General Comment 14 recognizes the right to health as an expansive human right closely related to, and dependent on, the realisation of other human rights that contribute to health.54 Paragraph 9 states that: . . . the right to health must be understood as a right to the enjoyment of a variety of facilities, goods, services and conditions necessary for the realization of the highest attainable standard of health.55
General Comment 14 indicates that the normative content of the right to health takes into account the ‘biological, social, cultural and economic preconditions’ for health and the available resources for health.56 It includes the entitlements to access a range of facilities, goods, services, and conditions that support the attainment of health, and presupposes the freedom to control one’s own body.57 As with all human rights the three types or levels of obligation imposed on states parties are the obligations to respect, protect and fulfil the right to health. The obligation to ‘fulfil’ the right to health contains obligations to facilitate, provide, and promote.58 General Comment 14 explicitly recognizes that the right to health is applicable to people with disabilities.59 With respect to the provision of health care services, General Comment 14 affirms the requirement that health care and public health facilities and services are to be ‘available, accessible, acceptable and of good quality’.60 The right to health requires that facilities, 52 ibid para 34 (citations omitted); see also International Convention on the Elimination of All Forms of Racial Discrimination, opened for signature 21 December 1965, 660 UNTS 195 Art 5(iv) (emphasizes the non-discriminatory ‘right to public health, medical care, social security and social services’); Art 12 CEDAW emphasizes the special needs of women particularly in relation to reproductive, maternity, and postnatal services; Art 24 CRC contains a comprehensive elaboration of the right to health care with a general and public health focus (see CRC Committee, ‘General Comment No 15 (2013) on the Right of the Child to the Enjoyment of the Highest Attainable Standard of Health (art 24)’ UN Doc CRC/C/GC/15 (17 April 2013)). Several regional human rights instruments also recognize the right to health, such as the European Social Charter (revised), opened for signature 3 May 1996, ETS 163 (Art 11), the African Charter on Human and Peoples’ Rights (adopted 27 June 1981, entered into force 21 October 1986) (1982) 21 ILM 59 (Art 16) and the Additional Protocol to the American Convention on Human Rights in the Area of Economic, Social and Cultural Rights (entered into force 16 November 1999) OAS Treaty Series No 69 (1988) (Art 10). 53 CESCR, ‘General Comment No 14: The Right to the Highest Attainable Standard of Health’ (Art 12 ICESCR) UN Doc E/C12/2000/4 (11 August 2000). 54 55 56 CESCR General Comment No 14 paras 1, 3, 4. ibid para 9. ibid. 57 58 59 60 ibid para 24. ibid para 33. ibid para 26. ibid para 12.
weller
Article 25
713
goods, and services (including health systems, hospitals, clinics, trained medical professionals, and medicines), and the underlying determinants of health such as safe and potable drinking water and adequate sanitation are available to people who need them.61 The notion of accessibility in the right to health refers to the overlapping dimensions of physical and economic access without discrimination, including affordable and accessible health related information.62 Acceptability refers to health care and services that accord with medical ethics and respect cultural sensitivities.63 Services of good quality are those that offer scientifically and medically appropriate care, skilled medical personnel, scientifically approved and unexpired drugs, hospital equipment, safe and potable water and adequate sanitation.64 In accordance with the principle of progressive realisation, General Comment 14 recognizes that the exact scope of state party obligations depends on the prevailing conditions and resources within each state.65 At present, the global challenge for the ‘right to the highest attainable standard of health and mental health’ is the ‘translation of international and national human rights law into operational policies, programmes, and other health-related interventions’.66 Debates about the scope of the right to health continue to be associated with a range of unresolved issues. Particular debates arise with respect to euthanasia, access to abortion, health care for children and young people, and compulsory mental health treatment.67 The CRPD challenges the extant interpretation of the right to health by requiring the inclusion of people with disability in the progressive realization of the right. While an inclusive stance is accepted in principle, the work required togive real effect to article 25 CRPD is considerable. Perhaps unsurprisingly, some of the contested thematic debates associated with the right to health emerged in the travaux préparatoires discussions of article 25. The first negotiations about the draft text of the CRPD began at the third session of the Ad Hoc Committee held from 24 May to 4 June 2004.68 At the third session the general scope of article 25 (then article 21) on health and rehabilitation was outlined, with several participants noting a preference for separate articles on the right to health and the right to rehabilitation. Article 25 was split between health and rehabilitation at the next draft, retaining a reference to health-related rehabilitation. Others argued for a closer alignment of the language of article 12 of the ICESCR. In this respect, three contested issues were noted in the initial discussion. These were issues related to the prevention of disability, involuntary psychiatric detention and treatment, and access to abortion. Debate about the second issue, involuntary psychiatric detention and treatment, was ultimately referred to the debate about the drafting of what was to become article 17. With respect to the prevention of disability there were conflicting views on whether article 25 should refer only to people with disabilities or include the prevention of disability with reference to non-disabled people.69 This issue was linked to a broader discussion about the definition 62 63 64 ibid para 12(a). ibid para 12(b). ibid para 12(c). ibid para 12(d). ibid para 12. 66 Paul Hunt ‘Foreword’ in Brigit Toebes et al (eds), The Right to Health: A Multi-Country Study of Law, Policy and Practice (Springer 2014) ii. 67 See generally Brigit Toebes et al (eds), The Right to Health: A Multi-Country Study of Law, Policy and Practice (Springer, 2014). 68 UN Enable, UN Convention on the Rights of People with Disabilities, Third Session of the Ad hoc Committee, Daily Summary of Discussions, available at: . 69 Arlene Kanter, ‘The Promise and Challenge of the United Nations Convention on the Rights of Persons with Disabilities’ (2007) 34 Syracuse Journal of International Law and Commerce 287. 61 65
weller
714
Health
of disability and the general scope of the overall convention.70 Disability organizations warned that preventive programs are traditionally associated with degraded and degrading treatment of people with disabilities. Discussions also acknowledged the value of prevention in avoiding the otherwise strong association between disability, poverty, and marginalization.71 Ultimately the view was taken that actions under the CRPD should relate to people with disabilities (as opposed to those who may become disabled in the future). The resolution of the issue in the text of article 25 is the inclusion of an obligation to provide ‘services designed to minimize and prevent further disabilities’.72 Reflecting on the debate, Marianne Schulze argues that prevention is an unresolved issue that should be progressed under the right to health in article 12 of the ICESCR.73 Schulze’s approach acknowledges that entitlement to the conditions that prevent disability, such as safe work conditions or appropriate maternal health care, should be questions of universal entitlement inclusive of people with disabilities. The final draft of article 21 of the Chair’s Working Text on the right to the enjoyment of the highest attainable standard of health without discrimination, was discussed in full at the seventh session of the Ad Hoc Committee on 24 and 25 January 2006. At this session minor changes were made to the text. For example, the word ‘elderly’ in paragraph (b) was changed to ‘older persons’ and ‘affordable health services’ in paragraph (a) was changed to ‘affordable health care and programmes’.74 The omission of ‘mental health’ from the standard phrase ‘highest attainable standard of physical and mental health’ was unremarked. The overarching sentiment of the drafting negotiations, however, represented a clear consensus with respect to the principle of inclusion and a ‘broad, holistic concept of health’.75 On this basis it may be supposed that the omission of a reference to mental health in article 12 denotes a general acceptance amongst states parties that the concept of health incorporates the concept of mental health. The conclusion that an inclusive approach to the definition of health was intentional is consistent with the general stance of the CRPD. On this basis, it can be argued that article 25 is equally applicable to health and mental health services. The main area of controversy associated with article 25 concerned access to abortion. This discussion arose on the day of full discussion in response to the inclusion of the phrase ‘reproductive health’ in the preamble to article 25.76 Strong interpretive statements were made by the United States, the Marshall Islands, and the Holy See to the effect that article 25 cannot be interpreted as creating abortion rights.77 Arlene Kanter reports that according to the US delegate: . . . the phrase ‘reproductive health’ in Article 25(a) of the draft Convention does not include abortion, and its use in that Article does not create any abortion rights, and cannot be interpreted to constitute support, endorsement, or promotion of abortion.78 70 The Seventh Ad Hoc meeting was devoted to a discussion of proposed definitions of disability: See, ‘Seventh Session of the Ad Hoc Committee’ (16 January–3 February 2006), available at: . 71 72 ibid. Art 25(b) CRPD. 73 Marianne Schulze, ‘The Human Rights of Persons with Disabilities’ in Anja Mihr and Mark Gibney (eds), The SAGE Handbook of Human Rights: Two Volume Set (Sage Publishing 2014) vol 2, 267, 280. 74 Bernadette McSherry, ‘International Trends in Mental Health Laws: Introduction’ (2008) 26 International Trends in Mental Health Laws, Law in Context 1, 7. 75 United Nations, ‘Committee Negotiating Convention On Rights Of Disabled Persons Concludes Current Session’ (Unofficial Press Release on Persons with Disabilities 20th Meeting (PM), No SOC/4680 12 August 2005), available at: . 76 77 78 Kanter (n 69) 305. ibid 306. ibid.
weller
Article 25
715
The Observer for the Holy See stated that his delegation also interpreted all the terms and phrases regarding family planning services, regulation of fertility and marriage in article 23, as it had done in its statements of interpretation at the Cairo and Beijing International Conferences on Women’s Health. Access to reproductive health is understood ‘to be a holistic concept that did not consider abortion or access to abortion as a dimension of the terms within the Convention’.79 The delegate of the Marshall Islands went further by saying that he . . . understood the language to ‘guarantee[e]the right to life of disabled persons from the moment of conception, throughout their natural lives . . . until their natural deaths.’
The interpretative statements reflect an ongoing tension about the recognition of abortion rights in international human rights law. As the comments indicate, the key argument put forward by those opposing recognition of abortion in international law is the lack of its explicit recognition in human rights instruments.80 Women’s rights advocates have long argued that access to reproductive services, especially contraception and safe legal abortion, is a key component of women’s rights under international human rights law.81 In 1995, the Fourth World Conference on Women, held in Beijing, reaffirmed the earlier position of the Third World Conference on Women in Cairo to include ‘sexual health’ (but not explicitly abortion) in the non-binding Platform for Action.82 The UN Human Rights Committee responsible for monitoring the ICCPR, recognizes that poor access to safe and legal abortions may compromise the right to life.83 The concern of many disability advocates, however, is the discriminatory nature of (otherwise restrictive) abortion laws in many countries that encourage or permit selective abortion on the basis of disability.84 Reference to ‘sexual and reproductive health’ in the CRPD is especially significant because it the first recognition of such rights in ‘hard’ law. Following the debate, the Chair’s Text put the phrase ‘sexual and reproductive health services’ in square brackets with a footnote stating that ‘[t]he Ad Hoc Committee understands draft paragraph (a) to be a non-discrimination provision that does not add to, or alter, the right to health as contained in article 12 of the International Covenant on Economic, Social and Cultural Rights’.85 The ultimate effect of the Chair’s caution with respect to the scope of the right in international law is a point of analysis that is beyond the scope of this chapter. In its jurisprudence, the CRPD Committee has pursued the question of abortion through the prism of disability discrimination under article 4 (General Obligations) and article 5 (discrimination).86 This approach highlights the importance of discrimination as a frame for the analysis of disability rights. ibid. Carole J Petersen, ‘Reproductive Justice, Public Policy, and Abortion on the Basis of Fetal Impairment: Lessons from International Human Rights Law and the Potential Impact of the Convention on the Rights of Persons with Disabilities’ (2015) 28 Journal of Law and Health 121, 144. 81 Rebecca Cook, The Human Rights of Women: National and International Perspectives (University of Pennsylvania Press 1994). 82 Susan Yoshihara, ‘Lost in Translation: The Failure of the International Reproductive Rights Norm’ (2013) 11 Ave Maria Law Review 367, 379. 83 Petersen (n 80) 146. 84 ibid138; see also Vanessa Volz, ‘A Matter of Choice: Women with Disabilities, Sterilization, And Reproductive Autonomy in the Twenty-First Century’ (2006) 27 Women’s Rights Legal Reporter 203, 211. 85 United Nations Enable, ‘Working Text, International Convention of the Rights of Persons with Disabilities’ (2006), available at: . 86 eg see Committee’s concluding comment regarding Spain and Hungary. 79 80
weller
716
Health
In summary, the discussions on the right to health in article 25 displayed a deep wariness about the possible expansion of the obligations associated with the right to health, particularly with respect to the availability of abortion and reproductive rights.
3. Article 25 (Chapeau) The concept of ‘access . . . . to health services’ in article 25 CRPD can be interpreted as an expansive right to the non-discriminatory inclusion of people with disabilities in health and mental health systems. The definition of discrimination on the basis of disability in article 2 CRPD (definitions): means any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including denial of reasonable accommodation.87
Discrimination on the basis of disability under the CRPD arises whenever ‘any distinction, exclusion or restriction on the basis of disability’ has the ‘purpose or effect’ of interfering with an individual’s human rights. The starting point for an analysis of discrimination on the basis of disability is whether a person’s exclusion has limited his or her enjoyment of human rights. Notably, the preamble to article 25 does include the phrase ‘on an equal basis with others’. This suggests that the CRPD recognizes the right to health as a positive right denoting a broad requirement to ensure that people with disabilities have access to necessary health and mental health care. Building on the articulation of the right to health in ICESCR General Comment 14, the right to health requires disability accessible buildings and economically accessible or affordable services.88 Access also refers to the accessibility and availability of health information, supported by a right to seek, receive, and impart information and ideas concerning health information. This clearly includes information about sexual and reproductive health where such information is available to people who are not disabled, and in any other circumstances where personal enjoyment of human rights is limited.89 People with disability must also be afforded an equal right to have personal health data treated with confidentiality.90 The question of state resources is closely connected to debates about the scope of the right to health, which is stressed by article 4(2) CRPD.91 Progressive realization means that states parties have a specific and continuing obligation to move as expeditiously and effectively as possible towards the full realisation of the right to health, in the context of available state resources.92 The ICESCR also recognizes discrimination as an exception to the principle of progressive realization.93 Art 2 CRPD (Definitions). CRPD Committee, ‘General Comment 2 (2014) Article 9: Accessibility’ UN Doc CRPD/C/GC/2 (22 May 2014). 89 Penelope Weller, ‘The Convention on the Rights of Persons with Disabilities and the Social Model of Health: New Perspectives (2011) The Journal of Mental Health Law 74. 90 91 See Art 22 CRPD. Art 4(2) CRPD and Art 2 ICESCR. 92 See Art 2 ICESCR; see Sigrun Skogly, ‘The Requirement of Using the ‘Maximum of Available Resources’ for Human Rights Realisation: A Question of Quality as Well as Quantity?’ (2012) 12 Human Rights Law Review 393. 93 Art 12(2) ICESCR. 87
88
weller
Article 25
717
In other words, the ICESR requires all human rights-related actions to be taken in accordance with the principle of non-discrimination. On this basis, the obligation to provide equal access to health services under article 25 of the CRPD is a binding obligation of immediate effect. Michael Ashley Stein and Janet Lord similarly conclude that deprivation of access to health care is an immediately justiciable right.94 The CRPD Committee notes that the positive obligations contained in article 25 CRPD are reinforced in article 25(c) ICCPR.95 Article 25(c) ICCPR enshrines the right of every citizen to have access, on general terms of equality, to public services in his or her country.96 While state parties may invoke the principle of progressive realisation regarding the right to health, the obligation to ensure that rights are enjoyed by people with disability without discrimination, has immediate effect.97 At a minimum, parties have an immediate obligation to ensure that all services and programs are open and accessible to people with disabilities.
3.1 Reasonable Accommodation The positive obligation to provide access to health care without discrimination on the basis of disability is reinforced by the principle of reasonable accommodation. Reasonable accommodation is defined in article 2 CRPD.98 Reasonable accommodation has been described ‘as the most fundamental instrumental element of the convention’ because it requires that which is necessary to create ‘a level playing field’ for people with disabilities compared with other persons.99 Reasonable accommodation imposes a positive duty to identify and remove or remedy structural, institutional, and organizational barriers to the enjoyment of a disabled person’s human rights.100 Denial of reasonable accommodation itself constitutes discrimination on the basis of disability. CRPD General Comment 2 on article 9 (accessibility) describes reasonable accommodation is an ‘ex nunc duty’ meaning that ‘it is enforceable from the moment an individual with an impairment needs it in a given situation’.101 The duty to provide reasonable accommodation imports positive obligations to ensure that existing health services are available and accessible to people with disabilities.102 To this end, states parties must ensure that services reach all sections of the population, especially and including people with disabilities. Moreover, given the scope of the right to health in article 12 ICESCR, the reference to ‘services’ in article 25 CRPD Stein, Lord, and Tolchin (n 5) 247. CRPD Committee, ‘General Comment 2 (2014) Article 9: Accessibility’ UN Doc CRPD/C/GC/2 (22 May 2014) para 2. 96 Art 9 CRPD similarly requires the identification and elimination of barriers to facilities or services open or provided to the public (see CRPD Committee, ‘General Comment 1 (2014) Article 12: Equal Recognition Before the Law’, UN Doc CRPD/C/GC/1 (19 May 2014) para 37). 97 Johan Borg, Stig Larsson, and Per-Olof Ostergren, ‘The Right to Assistive Technology: For Whom, For What, and by Whom?’ (2011) 26 Disability and Society 151; United Nations Office of the High Commissioner for Human Rights (OHCHR), The Human Rights Dimension of Disability: International Consultation on CBR Organised by WHO/DAR, May 2003 (UN OHCHR, 2003). 98 Art 2 CRPD (Definitions). 99 Rosemary Kayess and Phillip French, ‘Out of Darkness into Light? Introducing the Convention on the Rights of Persons with Disabilities’ (2008) 8 Human Rights Law Review 1. 100 Anna Lawson, ‘People with Psychosocial Impairment or Conditions, Reasonable Accommodation and the CRPD’ in Bernadette McSherry (ed), International Trends in Mental Health Laws, Law in Context (Federation Press 2008) 62; Ron McCallum and Hannah Martin, ‘Comment: the CRPD and Children with Disabilities’ (2013) 20 Australian International Law Journal 17, 21. 101 CRPD Committee, ‘General Comment 2 (2014) Article 9: Accessibility’ UN Doc CRPD/C/GC/2 (22 May 2014) para 26. 102 CRPD Committee General Comment 2 para 12. 94 95
weller
718
Health
can be taken to include services relating to the underlying determinants of health, such as safe and potable water in physical reach, adequate sanitation, sexual and reproductive health care and access to family planning, pre-and post-natal care, and emergency obstetric services.103 The principle of reasonable accommodation extends the scope of the minimum positive obligations of article 25. It is not sufficient to merely permit equal access or introduce general measures that promote access. Reasonable accommodation requires attention to the specific barriers that may be experienced by individuals with disabilities, limited only by the requirement that the modifications or adjustments do not impose ‘a disproportionate or undue burden’.104 To give a simple example: because of various constraints, such as those associated with communication, transport, independence, and housing, people with disabilities may have difficulty meeting strict appointment times. Strict appointment times are a typical feature of mainstream heath care services in developed nations designed to manage patient attendance. The obligation to make reasonable adjustments requires health services to modify such practices where they operate to exclude people with disabilities from accessing the service. As noted above, while accessibility and reasonable accommodation requirements support the introduction of general modifications to health systems, reasonable accommodation principles also mandate specific modifications addressing the particular access needs as well as general or generic access strategies. The task of making mainstream services accessible to people with disability requires the development of ‘universal design’ for health services.105 The history of segregation on the basis of disability has had a profound effect on service design. In many instances, the needs of people with disability were not considered. It was assumed that they were (or should be) catered for elsewhere. The cumulative effect of segregation is the practical and theoretical ‘absence’ of people with disability in mainstream health care theory and practice. The complete or partial invisibility of people with disabilities in traditional service provision planning means that the shift to universal design will be a significant task for many jurisdictions.106
3.2 Health Services that Are Gender-Sensitive Article 25 CRPD requires states parties to take all appropriate measures to ensure access for persons with disabilities to health services that are gender sensitive. ICESCR General Comment 14 urges states parties to ‘integrate a gender perspective in their health-related policies, planning, programmes and research’,107 with the objective of promoting ‘better health for both women and men’108 and addressing gender based inequalities in health. In particular, General Comment 14 encourages states parties to eliminate discrimination against women and promote women’s right to health.109 The CRPD adopts a ‘twin track’ approach to gender.110 The twin track approach refers to a dual strategy where gender dimensions are inducted into relevant articles, alongside a dedicated article on women with disabilities.111 The dual track is necessary because ‘the 104 105 CESCR General Comment 14. Art 2 CRPD (Definitions). ibid. Kristen Quinlan, Lisa Bowleg, and Susan Ritz, ‘Virtually Invisible Women: Women with Disabilities in Mainstream Psychological Theory and Research’ (2014) 4 Review of Disability Studies: An International Journal 781. 107 CESCR General Comment 14, para 20. 108 109 ibid. CESCR General Comment 14 para 14. 110 Amita Dhanda, ‘Sameness and Difference Twin Track Empowerment for Women with Disabilities’ (2008) 15 Indian Journal of Gender Studies 209. 111 ibid 213. 103 106
weller
Article 25
719
stark and unmediated experiences of women with disabilities throw the disempowering nature of gender into sharp relief ’.112 Women and girls comprise the largest group in the global disability population. Historically, they have been subject to discrimination on the grounds of their disability and gender,113 and excluded from mainstream debates in women’s health concerned with health, sexuality, and objectification of the body.114 Considered in light of the CRPD as whole and in the context of article 6, the requirement to make services ‘gender sensitive’ denotes a stronger requirement than merely incorporating women’s health services as ‘add ons’ in service provision (although this would be helpful). What is required is an effort to dismantle the assumption that men with disability constitute the norm around which disability services are arranged. Gender inequality in the context of disability is amplified by the neglect to particular women’s health needs throughout their lifespan. Health interventions for women and girls should provide the full range of high quality and affordable health care, including the prevention and treatment of diseases affecting women, sexual and reproductive services, programmes aimed at lowering rates of maternal mortality and protecting women from domestic violence and harmful traditional cultural practices, and responding to sexual assault.115 In the context of affirming the right to legal capacity, the CRPD Committee recognizes that: women with disabilities may be subject to multiple and intersectional forms of discrimination based on gender and disability. For example, women with disabilities are subjected to high rates of forced sterilization, and are often denied control of their reproductive health and decision-making, the assumption being that they are not capable of consenting to sex.116
Article 25 CRPD requires that the specific health needs of women and girls with disabilities are included in all health related programs and services. In this respect the wording in article 25 provides a salient reminder that women’s health perspectives, particularly as they relate to the experience of violence, are often underrepresented or fall from view in the design of both mainstream health sector and disability health services.117 This is particularly so in mental health care where the experience of sexual and physical violence, including during institutional care, is emerging as a key issue for mental wellbeing.118
4. Paragraph (a) Article 25(a) emphasizes the importance of providing the same range and quality of health care services to people with disabilities as are available to others.119 Paragraph (a) addresses the observation that general health care services needed by people with ibid 212. United Nations Enable, Daily Summary of Discussion at the Sixth Session, 2 August 2005, UN Convention on the Human Rights of People with Disabilities Ad Hoc Committee—Daily Summaries Vol 6 No 2 (2 August 2005), available at: . 114 Rannveig Traustadottir, ‘Obstacles to Equality: The Double Discrimination of Women with Disabilities’ in Rannveig Traustadottir, Women with Disabilities: Issues, Resources, Connections Revised (The Centre on Human Policy, Syracuse University 1997). 115 CESCR General Comment 14 para 21. 116 117 CRPD Committee General Comment 1 para 35. Weller (n 20). 118 Elizabeth Walsh et al, ‘Prevalence of Violent Victimisation in Severe Mental Illness’ (2003) 183 British Journal of Psychiatry 233; Alexander Tsai et al, ‘Violent Victimisation, Mental Health and Service Utilisation Outcomes in a Cohort of Homeless and Stably Housed Women Living With or at Risk of Becoming Infected with HIV’ (2015) 181 American Journal of Epidemiology 826. 119 Courtwright (n 15). 112 113
weller
720
Health
disabilities are frequently absent, limited or substandard.120 Article 25 imposes positive obligations aimed to ensure that people with disabilities have access to health services, including health-related rehabilitation. In the absence of equal access to health care, people with disabilities are at serious risk of delayed diagnoses, secondary co-morbidities, persistent abuse, depleted social capital and isolation.121 People with disabilities are too often ‘excluded from general health care by numerous obstacles, including . . . . physical inaccessibility, and communication barriers (such as a lack of sign language interpretation).122
Individuals with disabilities may lack coordinated care or be excluded from health outreach programmes.123 Promoting access includes physical ‘access to the premises’, ‘accessible transportation’ to health facilities, and access to health information, in forms such as sign language, Braille, accessible electronic formats, alternative script, and augmentative and alternative modes, means, and formats of communication.124 The wording of paragraph (a) makes it clear that the quality or standard to be achieved in service provision for people with disabilities is one that is commensurate with the general standard of services provided in a particular setting. On its face, the wording is commensurate with the principle of progressive realization. However, although a system of equally poor treatment may not appear to offend article 25, the impact of deprivation will have a disproportionate effect on people with disabilities. On this basis, it could be argued that the CRPD requires the health needs of people with disabilities to be prioritized in some circumstances. The strong link between articles 25 and 12 ICESCR recognized in the travaux suggests that the notion of quality is an aspirational one. The concept of quality is described in ICESCR General Comment 14 in the following terms: As well as being culturally acceptable, health facilities, goods and services must also be scientifically and medically appropriate and of good quality. This requires, inter alia, skilled medical personnel, scientifically approved and unexpired drugs and hospital equipment . . . .125
With respect to the question of the quality of services envisaged in article 25 CRPD, the purpose of the CRPD and the General Principles outlined in article 3 constitute a further guide. The purpose of the CRPD is: . . . to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.126
The principles are:127 (a) Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons; (b) Non-discrimination; (c) Full and effective participation and inclusion in society; Lindqvist (n 11). Michael Ashley Stein et al, ‘Health Care and the UN Disability Rights Convention’ (2009) 374 The Lancet 1796. 122 123 124 ibid. ibid. CRPD Committee General Comment 2 para 40. 125 126 CRPD Committee General Comment 14 para 12. Art 1 CRPD (Purpose). 127 CRPD Committee General Comment 1 para 4. 120 121
weller
Article 25
721
(d) Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity; (e) Equality of opportunity; (f ) Accessibility; (g) Equality between men and women; (h) Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities. The emphasis on autonomy, choice, and independence in article 3(a) places a positive obligation on states parties to promote the self-determination of people with disabilities on an equal basis with non-disabled people. Such an approach recognizes that people with disabilities are entitled to the same fundamental rights as people who are not disabled. With respect to article 25, first and foremost is the right to choose whether or not to accept proffered medical interventions. In this regard, article 25 encompasses the right to control one’s health and body and to be ‘free from interference, such as non-consensual medical treatment and experimentation’.128 Health services of quality are those that respect the dignity, autonomy, and free choice of persons with disabilities, reinforced by the obligation to provide such services on the basis of free and informed consent. The principle of free and informed consent is discussed in more detail below in relation to paragraph (d). The notion of quality also invokes an obligation to ensure that health services are acceptable to people with disabilities, culturally appropriate, respectful of minorities, peoples and communities, and sensitive to gender and life-cycle requirements. Acceptability reinforces the requirement in article 4 CRPD whereby states parties are under an obligation to adopt ‘suitable legal frameworks’ and consult actively with people with disabilities and their representative organisations. This obligation extends to the planning and development of health and mental health services.129 Paragraph (a) also refers to ‘free or affordable health care’. Most developed nations have systems of free health care for disadvantaged members of society, although the extent to which health and medical insurance systems provide ‘free’ health care varies considerably around the world. The key contribution of the CRPD is to highlight the requirement that whatever the system of health care funding, people with disabilities should be able to participate on an equal basis with others, without discrimination on the basis of disability. The issue of free and affordable health care and health insurance as it relates to disability is discussed under paragraph (d). Case law relating to enforcement of the right to health is relevant to the question of disability because of the strong link between poverty and disability. In jurisdictions that have incorporated the right to health in their constitutions, such as South Africa, Colombia, Brazil, and Argentina, a ‘first wave’ of right to health litigation arose. For example, the Indian Supreme Court has expanded the justiciable ‘right to life’ to include the right to live in dignity with adequate nutrition, clothing, and shelter (Francis Coralie Mullin v Union Territory of Delhi);130 the right of mothers and children to receive medical care (State of Punjab & others v Mohinder Singh Chawla);131 a right to appropriate conditions in mental hospitals (Rakesh Chandra Narayan v Union of India);132 and the provision of primary care in emergencies (Pascim Banga Khet Mazdoor Samity v State of 128 Carolyn Frohmader, Women with Disabilities and the Human Right to Health: A Policy Paper, Women with Disabilities Australia (WWDA May 2010). 129 CRPD Committee General Comment 2 para 28. 130 131 132 (1981) AIR 1981 SC 746. (1997) 2 SCC 83. (1989) AIR 1989 SC 148.
weller
722
Health
West Bengal).133 In 2008 the Constitutional Court of Columbia grouped together twenty- two individual appeals regarding the inadequacy of health system. The Court required Columbian health authorities to undertake necessary measures to resolve systemic issues, ultimately leading to the restructuring of Columbia’s health system.134 From 1999 to 2005 328,191, individual petitions about health care came before the courts of which 80 per cent were granted.135 Elsewhere, it was generally assumed that the right to health was vague, aspirational, and essentially non-justiciable.136 The health and human rights movement of later twentieth century revolutionized the latter assumption by articulating the connections between health and human rights.137 The European Court of Human Rights, for example, has upheld a range of health related petitions. Petitions concerning lack of access to health care or poor conditions in prisons;138 the deprivation of legal capacity on mental health grounds;139 the right to be free from unjustified use of psychiatric examination;140 and the right to be free from discrimination the basis of homosexuality;141 and/or HIV/AIDS142 have direct relevance to people with disabilities.
5. Paragraph (b) Paragraph (b) re-emphasizes the general obligation to provide appropriate services to people with disabilities, including full access to services that are specific to disability. The consequence of inappropriate or absent intervention is the escalation of disability. Paragraph (b) specifically requires the provision of appropriate care to minimize and prevent further disability. Although rarely discussed in the following terms, the case of Tysiac v Poland in the European Court of Human rights provides an example of relevant litigation. Ms Tysiac was a severely sight impaired person, who wished to avoid the further deterioration in her eye sight as the inevitably outcome of continuing her fifth pregnancy. Ms Tysiac was refused a termination of pregnancy, experiencing further
(1966) AIR SC 2426. Cabrera and Ayala (n 49) 29; Constitutional Court of Columbia T-760/08, 2008: Part II Sec 3. 135 Cabrera and Ayala (n 134) 32. 136 Philip Alston and Gerard Quinn, ‘The Nature and Scope of States Parties’ Obligations under the International Covenant on Economic, Social and Cultural Rights’ (1987) 9 Human Rights Quarterly 159; Benjamin Mason Meier, ‘Employing Health Rights for Global Justice: The Promise of Public Health in Response to Insalubrious Ramifications of Globalization’ (2006) 39 Cornell International Law Journal 733; Audrey R Chapman, ‘Conceptualizing the Right to Health: A Violations Approach’ (1997–1998) 65 Tennessee Law Review 390. 137 Jonathan Mann et al, ‘Health and Human Rights’ (1994) 1(1) Health and Human Rights 6–23; Sofia Gruskin and Daniel Tarantola, ‘Health and Human Rights’ in Sofia Gruskin, Michael A Grodin, George J Annas, and Stephen P Marks (eds), Perspectives On Health and Human Rights (Routledge 2005) 3–57. 138 Salakhov and Islyamova v Ukraine (2013) App No 28005/08; Elefteriadis v Romania App 38427/05; Kharchenko v Ukraine App No 40107/02; Gladkiy v Russia App No 3242/03; Slawomir Musial v Poland App No 28300/06; Belashev v Russia App No 28617/03; Branduse v Romania App No 6586/03; Mechenkov v Russia App No 35421/05 (2008); Khudobin v Russia (2009) 48 EHRR 22; Testa v Croatia (2008) 47 EHRR 29; Jalloh v Germany (2007) 44 EHRR 32; MSS v Belgium and Greece (2011) 53 EHRR 2; Cf Hajol v Poland no 1127/ 06; Shelly v United Kingdom (2008) 23800/06; [2008] ECHR 108 where no violation was found. 139 Sykora v Czech Republic App No 23419/07; [2012] ECHR 1960; Stanev v Bulgaria (2012) 55 EHRR 22; Shtukaturov v Russia (2012) 54 EHRR 27; Cf Munjaz v United Kingdom (2012) App No 2913/06; [2012] ECHR 1704. 140 Fyodorov and Fyodorova v Ukraine, App No 39229/03. 141 142 ABC v Ireland (2011) 53 EHRR 13. Kiyutin v Russia (2011) 53 EHRR 26. 133 134
weller
Article 25
723
irreversible damage to her eyesight as a result of the pregnancy. After these events, she successfully asserted a right to access termination of pregnancy in circumstances where deterioration of her eyesight would prevent her from caring adequately for her children.143 The vision of the CRPD is for fully inclusive systems and services where disability is counted as a relevant aspect of each person’s health care. It is not specified in paragraph (a) or paragraph (b) of article 25 whether it is necessary to provide all disability services within mainstream service systems, or whether separate disability specific services are acceptable. As is noted above, people with disabilities report multiple barriers to achieving appropriate service access. In mainstream services there may be a lack of knowledge about disability generally, poor physical access, a lack of expertise with respect to the management of disabilities, and a lack of expertise with respect to the interaction of disabilities and other health conditions.144 Separate service provision for mainstream issues is often associated with lower standards of care for people with disability. In some circumstances separate specialist services capable of addressing complex needs may be preferred by people with disability. For example, special services for people with HIV/AIDS may be preferred because they provide a service that is highly skilled, and a place that is attuned to the problems of HIV/AIDS related stigma and discrimination. The principle of inclusion in the CRPD suggests that mainstream service provision is preferable. However, separate services may be appropriate as an interim measure in circumstances where separate services are chosen and preferred by people with disabilities. The latter conclusion is consistent with the obligation in article 4(3) CRPD to consult with people with disability about the implementation of the CRPD.
6. Paragraph (c) Paragraph (c) urges states parties to provide services as close as possible to people’s own communities, including in rural areas. This is a specific requirement that reinforces and expands the principles of accessibility and availability outlined above. It is important because it prioritizes the needs of people with disabilities over other considerations in the location of services.145 If paragraph (c) is implemented, it promises to change how infrastructure projects for health are developed in those countries that ratify the Convention.146 Nevertheless, as is noted above, one of they key challenges remains the need to enhance the willingness and ability of mainstream services to accommodate the needs of disabled people. For example, in a recent study about birthing choices in Nepal where services are being enhanced to meet the Sustainable Development Goals, disabled women made the same choices about services as other women. However, health workers reported a lack of confidence in their ability to care for disabled women resulting in an increased tendency to refer disabled women to institutional series further afield.147 Tysiac v Poland (2007) 45 EHRR 42; L v Lithuania (2008) 46 EHRR 22. 145 146 Art 25(b) and (c) CRPD. Kanter (n 21) 566. ibid. 147 Joanna Morrison, Machhindra Basnet, Bharat Budhathoki, Dhruba Adhikari, Kirti Tumbahangphe, Dharma Manandhar, Anthony Costello, and Nora Groce, ‘Disabled Women’ Maternal and Newborn Health Care in Rural Nepal: A Qualitative Study’ (2014) 30 Midwifery 1132. 143 144
weller
724
Health
7. Paragraph (d) 7.1 Free and Informed Consent The requirement that health care be provided on the basis of ‘free and informed consent’ is perhaps the most important element in article 25(d). The CRPD Committee has emphasized the obligation to provide health and mental health care on the basis of free and informed consent in CRPD General Comment 1, in the Guidelines on article 14 of the CRPD (The Right to Liberty and Security of Persons with Disabilities),148 as well as in several country reports, often in relation to articles 14, 15, and 17.149 As other articles in the CRPD do not refer directly to informed consent, it is reasonable to assume that the source of the obligation lies in the text of article 25, coupled with the general recognition of the right to informed consent which is recognized in international and domestic law. Informed consent is rooted in concerns about protecting and ‘enabling autonomous or self-determining choice by patients and subjects’.150 The concept entered into international human rights language in the Nuremberg Code, which was drafted as the end of the Nazi war trials in1947. The Nuremberg Code is a set of ethical principles for medical experimentation.151 Principle 1 states that ‘(T)he voluntary consent of the human subject is absolutely essential.152 The Declaration of Helsinki of the World Medical Association (promulgated in 1964 and revised nine times since) notes that ‘(T)he physician or another appropriately qualified individual must then seek the potential subject’s freely given informed consent, preferably in writing.’153 Article 5 of the Convention on Human Rights and Biomedicine (1997) states that ‘an intervention in the health field may only be carried out after the person concerned has given free and informed consent to it’.154 In its human rights dimension, informed consent is a mechanism that denotes respect and protection of a patient’s autonomy, self-determination and physical and mental integrity.155 In contrast to its early recognition in international law, the development of informed consent in domestic law was slow to recognize the link between informed consent, autonomy, and human rights. Until the second half of the twentieth century informed consent was widely understood as a protective shield for physicians who may otherwise 148 CRPD Committee, ‘Guidelines on Article 14 of the Convention on the Rights of Persons with Disabilities, The Right to Liberty and Security of Persons with Disabilities’ (September 2015). 149 CPRD Committee, Concluding Observations on Sweden, para 38; Concluding Observations on El Salvador, paras 32, 51; Concluding Observations on Mexico, para 50; Concluding Observations on Ecuador, para 29; Concluding Observations on New Zealand, para 30; Concluding Observations on Qatar, para 45; Concluding Observations on Gabon, para 56. 150 George J Annas, ‘Globalized Clinical Trials and Informed Consent’ (2009) 360 New England Journal of Medicine 2050. 151 US Government, Permissible Medical Experiments: Trials of War Criminals Before the Nuremberg Military Tribunals Under Control Council Law No 10: Nuremberg October 1946–April 1949, vol 2 (US Government Printing Office 1950) 181; Benjamin Mason Meier, ‘International Protection of Persons Undergoing Medical Experimentation: Protecting the Right of Informed Consent’ (2003) 20 Berkeley Journal of International Law 513. 152 Trials of War Criminals before the Nuremberg Military Tribunals under Control Council Law No 10, vol 2 181–82, Washington DC: US Government Printing Office 1949, cited at: . 153 World Medical Association, Declaration of Helsinki—Ethical Principles for Medical Research Involving Human Subjects (revised October 2013) para 26. 154 Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, opened for signature 4 April 1997, CETS 164 (entered into force 1 December 1999); Annas (n 137). 155 Ruth R Faden and Tom L Beauchamp, A History and Theory of Informed Consent (OUP 1986) 7.
weller
Article 25
725
be subject to legal action for assault.156 Over time the law of informed consent in many countries developed to its current form. In general, the law of consent requires that legally valid consent to medical treatment be ‘informed’ and freely given and by a person with legal capacity.157 Although case law varies across jurisdictions, the first requirement is generally interpreted as an obligation to impart certain categories of information to the patient. The second and third requirements combine to form a requirement for independent decision making by a person with mental capacity in the absence of undue influence.158 Debate about informed consent in domestic forums has often overlooked its human rights dimension. For example, bioethicists Neil Manson and Onora O’Neil dismiss the law of informed consent as an unworkable legal fiction.159 They argue that such laws are based on distorted conceptions of the nature and significance of human communication. They argue that informed consent reifies autonomous and rational choice, while overlooking the essence of the clinical interaction. It then perpetuates its own fiction, they argue, by expanding the categories of information that will be required to satisfy the duty of full disclosure.160 For Manson and O’Neill the underlying problem is the difficulty of health communication. They describe true consent in health care as the product of a ‘communicative transaction’ ideally involving a rich interactive communication in a shared normative setting where the parties have a practical and cognitive commitment to the decision, know something of each other and adhere to shared set of norms.161 The Manson and O’Neill analysis overlooks the overlay of discrimination that surrounds the notion of health communication. For example, since the work of the MacArthur Competence study in the United States it is clear that discriminatory assumptions about the mental abilities of people with psychosocial impairments may result in the unnecessary denial of legal capacity.162 Putting the above criticism aside, informed consent has been instrumental in challenging medical paternalism across a range of health care issues.163 The law in some jurisdictions has developed a more fulsome articulation of informed consent, albeit in a way that still falls short of the contemporary human rights vision.164 In this jurisprudence, the principles of informed consent are used to assert the legitimacy of an individual’s subjective choice with respect to options for medical treatment options.165 Informed consent emerges as a positive right enabling self-determining individuals to access and control the
157 ibid. Re C (Adult: Refusal of Medical Treatment) [1994] 1 All ER 819. Alasdair Maclean, Autonomy, Informed Consent and Medical Law: A Relational Challenge (CUP 2009). 159 Neil C Manson and Onora O’Neil, Rethinking Informed Consent in Bioethics (CUP 2007). 160 161 ibid 5, 26. ibid 46. 162 Paul Appelbaum and Thomas Grisso, ‘The Macarthur Treatment Competence Study. I: Mental Illness and Competence to Consent to Treatment’ (1995) 19 Law and Human Behaviour 105; Thomas Grisso et al, ‘The Macarthur Treatment Competence Study. II: Measures of Abilities Related to Competence to Consent to Treatment’ (1995) 19 Law and Human Behaviour 127; Thomas Grisso and Paul Appelbaum, ‘The Macarthur Treatment Competence Study. III: Abilities of Patients to Consent to Psychiatric and Medical Treatments’ (1995) 19 Law and Human Behaviour 149. 163 Penelope Weller, New Law and Ethics in Mental Health Advance Directives: The Convention on the Rights of Persons with Disabilities and the Right to Choose (Routledge 2013). 164 Penelope Weller ‘Towards a Genealogy of “Coercive Care” ’ in Bernadette McSherry and Ian Freckelton (eds), Coercive Care: Rights, Law and Policy (Routledge 2013). 165 Canterbury v Spence (1972) 464 F 2d 772 (DC Cir 1972); Rogers v Whitaker (1992) 175 CLR 479. 156 158
weller
726
Health
provision of health care.166 The European Court of Human Rights recognizes that competent adults are free to consent to and refuse treatment for any reason, ‘even if death will result’.167 Nevertheless, in both international and domestic law the extent to which personal choice prevails over medical advice, or interacts with other substantive obligations of the state, remains uncertain. The language of informed consent has not featured in international human rights documents. For example, it is absent from the foundation statement on the right to health in article 12 of the ICESCR. Paragraph 30(3)(iv) of ICESCR General Comment 14 (2000) mentions the obligation to support people in making ‘informed choices’ about their health. Article 12 of the Convention on the Elimination of Discrimination Against Women is similarly silent. General Recommendation 24 (1999) by the Committee on the Elimination of Discrimination Against Women states: Women have the right to be fully informed, by properly trained personnel, of their option in agreeing to treatment or research, including likely benefits and adverse effects of proposed procedures and available alternatives.168
Paragraph 22 refers to informed consent as a component of acceptability.169 The Recommendations of the Committee of Ministers to member states Concerning the Protection of the Human Rights and Dignity of Persons with Mental Disorder by the Council of Europe emphasize voluntary treatment.170 The revised European Committee for the Prevention of Torture and Inhuman or Degrading Treatment or Punishment (CPT) Standards require informed consent for the provision of medical treatment in detention.171 As the above analysis indicates, informed consent is an evolving standard.172 Prior to the CRPD it was thought that the right to free and informed consent was reserved for those persons who were regarded as having sufficient mental capacity. Informed consent in domestic law only applies to people who demonstrate a requisite level of mental capacity. The notion of ‘mental capacity’ in law has emerged as a stand-alone principle from the common law on informed consent. A typical definition is found in section 3 of the Mental Capacity Act 2005 (England and Wales): ; . . . a person is unable to make a decision for himself if he is unable— (a) to understand the information relevant to the decision, (b) to retain that information, (c) to use or weigh that information as part of the process of making the decision, or (d) to communicate his decision (whether by talking, using sign language or any other means). 166 Andrew Bradley, ‘Positive Rights, Negative Rights and Health Care’ (2010) 36 Journal of Medical Ethics 838. 167 Arlene S Kanter, The Development of Disability Rights Under International Law: From Charity to Human Rights (Routledge 2014) 203; see Pretty v United Kingdom [2002] ECHR 427; Tysiac v Poland [2007] ECHR 219. 168 CEDAW Committee, ‘General Recommendation 24—Article 12—Women and Health’, UN Doc A/ 54/38/Rev 1 (1999) para 20. 169 ibid para 22. 170 Council of Europe, ‘Recommendation Rec (2004) 10 of the Committee of Ministers to Member States Concerning the Protection of the Human Rights and Dignity of Persons with Mental Disorder’, 869th mtg COE Doc Rec(2004)10E (22 September 2004). 171 European Committee for the Prevention of Torture and Inhuman or Degrading Treatment or Punishment (CPT), CPT Standards (revised), COE Doc CPT/Inf/E (2002) 1—Rev 2015 (January 2015) 26, 53. 172 Kanter (n 167) 204.
weller
Article 25
727
If a person is found to lack mental capacity, he or she is automatically regarded as a person who is unable to make valid legal decisions. Capacity determinations tend to limit decision making to a kind of formal, instrumental rationality, standing in tension with the common law notion that a person may ‘make a decision for any reason or no reason at all’.173 The significance for people with disability is that the capacity criteria in informed consent law provides a basis for a general assumption that people with disabilities, and especially those with cognitive or psychosocial disabilities, are unable to give informed consent.174 The argument that a person lacks mental capacity has typically underpinned the theoretical and practical justifications for ‘specific and intrusive regulation’ often related to health that apply to people with disabilities.175 For example, the Principles for the Protection of Persons with Mental Illness and for the Improvement of Mental Health (MI Principles) adopted by the United Nations in 1991, which set minimum standards of care and treatment for people with mental illness included extensive exceptions to the general requirement that the treatment be provided with informed consent.176 The exceptions encompassed involuntary patients, those who had a personal representative and those requiring urgent treatment to prevent imminent harm to themselves or to another person.177 The Special Rapporteur on the Right of Everyone to the Enjoyment of the Highest Attainable Standard of Physical and Mental Health at that time, Paul Hunt, concluded that the principle of informed consent in the MI Principles was subject to such extensive exceptions and qualifications that it is rendered ‘almost meaningless’.178 Caroline Gendreau has expressed similar concerns that the MI Principles limited the scope of rights that were thought to apply to people living with mental illness at the time.179 The Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993) shifted the focus of disability rights to a human rights model. The CRPD pushes the boundaries of the informed consent principle by linking article 25 and article 12 (equal recognition before the law).
7.2 The Interaction between Article 12 and Article 25 The CRPD Committee regards the protection of equal recognition before the law in article 12 and the consequent right to legal capacity as the key to accessing meaningful participation in society.180 In CRPD General Comment 1, legal capacity is defined as ‘the ability to hold rights and duties (legal standing) and to exercise those rights and duties (legal agency).’181 As a holder of rights with legal standing, a person with legal capacity is entitled to the full protection of his or her rights by the legal system. As a legal agent, he or she is entitled to create, modify, or end legal relationships.182 With respect to health care, recognition of legal capacity
Weller (n 163) 13. Amita Dhanda, ‘Legal Capacity in the Disability Rights Convention: Stranglehold of the Past or Lodestar for the Future’ (2007) 34 Syracuse Journal of International Law and Commerce 429. 175 Peter Bartlett, ‘The United Nations Convention on the Rights of Persons with Disabilities and the Future of Mental Health Law’ (2009) 18 Psychiatry 496. 176 MI Principles, Principle 11 Consent to treatment—‘1. No treatment shall be given to a patient without his or her informed consent, except as provided for in paragraphs 6, 7, 8, 13 and 15 below.’ 177 178 MI Principles, Principle 11(6). Hunt (n 3) 88. 179 Caroline Gendreau, ‘The Rights of Psychiatric Patients in the Light of the Principles Announced by the United Nations: A Recognition of the Right to Consent to Treatment?’ (1997) 20 International Journal of Law and Psychiatry 259. 180 181 182 CRPD Committee, General Comment 1 para 13. ibid. See McSherry (n 74). 173 174
weller
728
Health
is an inherent attribute of people with disabilities, entitling them to accept or reject health interventions on the same basis as others. Eilionóir Flynn and Anna Arstein-Kerslake argue that legal capacity is important because it gives people with disabilities a place in society: Where an individual is not recognised as a full person before the law with agency and personhood, she is largely unheard, treated as voiceless, and has little recourse to remedy these wrongs.183
Moreover, in this regard the CRPD: . . . provides the tools to challenge the notion that ‘protection’ must come in the form of denial of legal agency. Instead, it encourages ‘protection’ of all human rights and of the individual through empowerment, recognition of decision-making, and support through social connectedness.184
Amita Dhanda observes that ‘(w)ithout legal capacity the guarantee of free and informed consent in article 25 is diminished.’185 Similarly, paragraph 41 of CRPD General Comment 1 makes it clear that the obligation to provide medical treatment on the basis of free and informed consent to people with disabilities is a core element of the overarching obligations arising from article 12 CRPD.186 CRPD General Comment 1 urges states parties to ‘respect the legal capacity of persons with disabilities to make decisions at all times, including in crisis situations’. The CRPD Committee explains, for example, that the CRPD requires decisions about medical and psychiatric treatment to be based on the free and informed consent of the person concerned and should respect the person’s autonomy, will and preferences.187 The Committee requires that legislative provisions permitting forced treatment, especially for persons with psychosocial, intellectual and other cognitive disabilities ‘must be abolished’.188 It recommends that ‘States parties ensure that decisions relating to a person’s physical or mental integrity can only be taken with the free and informed consent of the person concerned.189 The preferred approach is to ‘include accurate information about service options, including non-medical approaches’, and to ‘provide decision-making support’.190 CRPD General Comment 1 prohibits the denial of legal capacity on the basis of mental incapacity,191 requiring instead positive measures supporting legal capacity. CRPD General Comment 1 explains: 17. ‘Support’ is a broad term that encompasses both informal and formal support arrangements, of varying types and intensity. For example, persons with disabilities may choose one or more trusted 183 Anna Arstein-Kerslake and Eilionóir Flynn ‘The General Comment on Article 12 of the Convention on the Rights of Persons with Disabilities: A Roadmap for Equality Before the Law’ (2015 online) The International Journal of Human Rights 1. 184 ibid 2; see also Eilionóir Flynn and Anna Arstein-Kerslake, ‘Legislating Personhood: Realising the Right to Support in Exercising Legal Capacity’ (2014) 10 International Journal of Law in Context 81. 185 186 Dhanda (n 174). CRPD Committee, General Comment 1 para 41. 187 188 CRPD Committee, General Comment 1 paras 21, 42. ibid para 42. 189 190 ibid. ibid. 191 At its most basic, the principle of non-discrimination ensures that assessments of mental capacity are not tainted by discrimination. Since the work of the MacArthur Competence study in the United States it is clear that discriminatory assumptions about the mental abilities of people with psychosocial impairments may result in unnecessary denial of legal capacity: Paul S Appelbaum and Thomas Grisso, ‘The Macarthur Treatment Competence Study I: Mental Illness and Competence to Consent to Treatment’ (1995) 19 Law and Human Behaviour 105;.Thomas Grisso et al, ‘The Macarthur Treatment Competence Study II: Measures of Abilities Related to Competence to Consent to Treatment’ (1995) 19 Law and Human Behaviour 127; Thomas Grisso and Paul S. Appelbaum, ‘The Macarthur Treatment Competence Study III: Abilities of Patients to Consent to Psychiatric and Medical Treatments’ (1995) 19 Law and Human Behaviour 149.
weller
Article 25
729
support persons to assist them in exercising their legal capacity for certain types of decisions, or may call on other forms of support, such as peer support, advocacy (including self-advocacy support), or assistance with communication. Support to persons with disabilities in the exercise of their legal capacity might include measures relating to universal design and accessibility. Support can also constitute the development and recognition of diverse, non-conventional methods of communication, especially for those who use non-verbal forms of communication to express their will and preferences.192
Support encompasses measures ranging from personal decision making to the active use of advance directives, co-decision makers or appointed decision makers, provided such measures are chosen by and acceptable to the person. The overarching requirement is that the ‘rights, will and preference of the person’ are respected.193 In cases where the wishes of the person are not known, decisions should be made on the basis of the ‘best interpretation of will and preferences’, but must never amount to substitute decision making.194 Substitute decision making is defined in General Comment 1 as instances where: (i) legal capacity is removed from a person, even if this is in respect of a single decision; (ii) a substitute decision maker can be appointed by someone other than the person concerned, and this can be done against his or her will; and (iii) any decision made by a substitute decision maker is based on what is believed to be in the objective ‘best interests’ of the person concerned, as opposed to being based on the person’s own will and preferences.195 . . . when after significant efforts have been made it is impracticable to determine a person’s will and preferences, practices associated with ‘best interests’ determinations should be replaced by the standard of ‘best interpretation of the will and preferences’ of the person.196
The requirement to ensure that decisions are made in accordance with the ‘rights, will and preferences’ of the person is based on the text of article 12(4) CRPD which refers to the safeguards that must be in place when measures of support are employed. Article 12(4) ‘requires states parties to create appropriate and effective safeguards for the exercise of legal capacity’.197 CRPD General Comment 1 states that safeguards for the exercise of legal capacity must include protection against undue influence. It is explained that undue influence may occur when ‘the quality of the interaction between the support person and the person being supported includes signs of fear, aggression, threat, deception or manipulation’.198 The question of how evaluations of support relationships should proceed is an area of consideration that is undeveloped in the CRPD literature and may warrant further elaboration by the CRPD. Paragraph 29 of CRPD General Comment 1 summarizes the requirements for support for legal capacity, these being equally applicable to the design of a process of informed consent suitable for people with disabilities. Informed consent processes should be: (a) available to all; (b) based on will and preference; (c) accommodate the person’s communication method; (d) include a mechanism that could challenge the actions of support persons; (e) be available at nominal, or no, cost; (f ) not be used to justify a limitation of rights; (g) include a right to refuse support (and treatment); (h) include safeguards aimed at protecting the person’s preference and; (i) ensure that provision of support does not
193 CRPD Committee, General Comment 1 para 17. CRPD Art 12(4). CRPD General Comment 1 para 21. 195 CRPD General Comment 2 para 27; Arstein-Kerslake and Flynn, (2015 online) (n 183) 6; CRPD General Comment 1 para 21. 196 197 ibid para 23. Art 12(4) CRPD. 198 CRPD Committee, General Comment 1 para 28. 192 194
weller
730
Health
hinge on mental capacity assessments.199 The overarching requirement is that sufficient support is provided to enable persons with disabilities access to make decisions that produce legal effect. The emphasis on support for legal capacity challenges the traditional requirement in the law of informed consent that decisions must be made without ‘undue influence’. The case law on undue influence often concerns influence exerted by intimate or family associates.200 The effect of the requirement typically raises legal doubts about decisions made by people with disabilities either on the basis that people with disabilities are inherently vulnerable to the influence of others or have not made the decision themselves. While it is appropriate and necessary to consider the problem of undue influence, people with disabilities who require support to make decisions may experience the requirement as a barrier to participation in the informed consent process. Paragraph 23 of the CRPD Committee’s General Comment 1 points out that the appropriate response is not to insist on independent decision making, but to focus instead on the quality of the interaction between people with disability and support persons and the requirements for safeguarding the legal capacity of people with disabilities contained in article 12(4). To date the content of General Comment 1 as it applies to health has been underestimated. For example, Arlene Kanter argues that the right to health in article 25 CRPD conflicts with the prohibition against detention on the basis of disability in articles 14 and 15.201 The analysis of support for legal capacity provided by the CRPD Committee in General Comment 1 provides a response to the perceived conflict by expanding the conceptualization of informed consent. In summary, the principle of informed consent in article 25 CRPD coupled with support for legal capacity in article 12 creates a new approach to decision making in health that could be described as a form of supported informed consent. Should such an approach be practised in reality, the CRPD model of supported informed consent may come close to the kind of context-dependent human interaction that Manson and O’Neil describe as essential for health communication. As noted above, Manson and O’Neil argue that appropriate health decisions can only be made when clinical relationships are characterized by trust, a shared value system and agreement about the objective of the proposed medical intervention. If that analysis is correct, the CRPD or supported informed consent could provide a model for the development of communicative interactions that are sought by disabled people and non-disabled people alike.
7.3 Human Rights Training of Health Professionals The second limb of paragraph (d) refers to the obligation to ‘raise awareness of the human rights, dignity, autonomy and needs of persons with disabilities’ amongst health professionals through ‘training and the promulgation of ethical standards for public and private health care’. The requirement of awareness training sits well with the requirement to provide health treatment on the basis of free and informed consent, because the obligation to provide informed consent falls on health professionals.
CRPD Committee General Comment 1 para 29. eg with respect to the refusal of blood products on religious grounds. 201 Kanter (n 167) 217. 199 200
weller
Article 25
731
The link between accessibility, in this case the accessibility of health services, lack of awareness and need for training about human rights is noted in CRPD General Comment 2.202 Writing in the context of the United States, Michael Ashley Stein points out that training and education programmes that focus on the awareness of and care and sensitivity toward the needs of individuals with disabilities would complement the current educational frameworks focusing on cultural competence.203 He notes that: although training programmes commonly provide specific instruction in care for individuals belonging to racial, ethnic, and linguistic minorities, they do not do so as often for individuals with disabilities—the largest minority population that many providers serve.204
This suggestion provides a practical avenue for the development of human rights awareness. Stein argues that a key component of awareness education is the inclusion of people with disabilities in teaching programs. Such an approach aims to break down common assumptions and negative attitudes, often held by health professionals, about the lived experience of disability.205
8. Paragraph (e) Paragraph (e) requires states parties to prohibit discrimination on the basis of disability in the provision of health insurance and ensure that people with disabilities are provided with insurance services in a fair and reasonable manner. In many countries, access to health insurance is essential, or at least, facilitates access to health services.206 At its most basic level, the obligation to prohibit discrimination on the basis of disability targets insurance practices that treat people with disability unfavourably.207 For example, challenging disability discrimination in the provision of private health insurance for people with HIV/AIDS was a key component of the HIV/AIDS movement. Insurance for people with HIV/AIDS was declined or people with HIV/AIDS were required to pay inflated premiums.208 The HIV/AIDS human rights campaign successfully challenged insurance companies to align their insurance practice and premiums with realistic actuarial data.209 In Victoria, Australia a recent legal action has shed light on the common practice of refusing to pay insurance benefits to individuals with mental health problems, when documentation revealed that the person suffered from a mental health condition, including
CRPD Committee, General Comment 2, provides that: ‘article 9 requires that States parties provide training to all stakeholders on accessibility for persons with disabilities (para 2(c))’. 203 Michael Ashley Stein et al, ‘Health Care and the UN Disability Rights Convention’ (2009) 374 The Lancet 1796. 204 205 ibid. ibid. 206 Robert Boston and Brian Clifford, ‘Laws Affecting Wellness Programs and Some Things They Make You Do’ (2013) 39 Employee Relations Law Journal 30; Carrie Griffin Basas, ‘What’s Bad About Wellness? What the Disability Rights Perspective Offers About the Limitations of Wellness’ (2014) 39 Journal of Health Politics, Policy and Law 1035; Stacey A Tovino, ‘Will Neuroscience Redefine Mental Injury? Disability Benefit Law, Mental Health Parity Law, and Disability Discrimination Law’ (2015) Indiana Health Law Review 695. 207 Ellen Weber, ‘Equality Standards for Health Insurance Coverage: Will the Mental Health Parity and Addiction Equity Act End The Discrimination?’ (2013) 43 Golden Gate University Law Review 179. 208 Will Adler, ‘A Legal Perspective on Insurance Industry Reactions to AIDS’ 30 (1992) Law Society Journal 64–66; Luisa Dillner, ‘HIV and Insurance 1991’ (1991) 303 British Medical Journal 327. 209 Marcia Neave, ‘Anti-Discrimination Laws and Insurance: The Problem of AIDS’ 1 (1988) Insurance Law Journal 10. 202
weller
732
Health
an inference drawn from the act that the person had visited a psychologist or counsellor in the past.210 However, the definition of disability in the CRPD points to wider obligations than merely the provision of fair and reasonable insurance services, both in the public and private sectors. Anita Silvers and Leslie Francis have argued that the CRPD ‘fails to provide the theoretical machinery for responding to the pressing challenges of health care costs’.211 Writing in the context of health insurance in the United States, Silvers and Francis note that while people with disabilities may be formally included in public health care schemes, such schemes are rarely ‘accompanied by a mandate to be responsive to their disabilities in delineating the benefits to which participants are offered access’.212 They argue that the degree to which each disabled person can be functional and independent will be depend on how ‘austere, or generous’ the minimal provision of services is in different care categories.213 Similar arguments may be made with respect to public disability specific insurance schemes in Australia and the United Kingdom that have been specifically developed in response to the CRPD.214 Understood in its broader context, article 25 could be invoked in support of a critique of current insurance practice and of the new schemes.
9. Paragraph (f) Paragraph (f ) prohibits denial of health care, health services, and food and fluid on the basis of disability. This paragraph addresses the concern that people with disabilities are denied access to health care and services in a way that directly limits wellbeing and infringes on the right to life. Nora Groce’s work for example, identifies the impact of the routine exclusion of people with disabilities from health care, education, and work at all stage of life.215 For example, a report from the United States Commission on Civil Rights in 1989 notes that: Discriminatory denial of medical treatment, food and fluids is and has been a significant civil rights problem for infants with disabilities.216
Similarly, the International Federation for Spina Bifida and Hydrocephalus reports that parents often receive counselling against active treatment which is explicitly based on the child’s disability. In such cases, evaluation of the baby’s future quality of life is usually
210 Ingram v QBE Insurance (Australia) Ltd [2015] VCAT No H107/2014 (18 December 2015), it was held that QBE unlawfully discriminated against a policy holder by excluding mental illness in a travel insurance policy, and by relying on that exclusion to refuse the policy holder indemnity. The policy holder was awarded the monetary value of cancelled trip and an additional $15,000 for hurt and humiliation; see also Kate Judd, ‘Mental Health, Discrimination and Insurance in Australia’ (2011) New Paradigm 24. 211 Anita Silvers and Leslie Francis, ‘Human Rights, Civil Rights: Prescribing Disability Discrimination Prevention in Packaging Essential Health Benefits’ (2013) 41 Journal of Law, Medicine & Ethics 781, 798. 212 213 ibid. ibid 781, 788. 214 See Matthew Weait, ‘The United Kingdom: The Right to Health in the Context of a Nationalised Health Service’ in Jose M Zuniga, Stephen P Marks, and Lawrence O Gostin, Advancing the Human Right to Health (OUP 2013) 209. 215 Nora Groce, ‘People with Disabilities’ in Barry S Levy and Victor W Sidel (eds), Social Injustice and Public Health (OUP 2013) 145. 216 US Commission on Civil Rights, Medical Discrimination Against Children with Disabilities (1989) 148; cf Robyn Shapiro, ‘Against Children with Disabilities: A Report of the US Commission on Civil Rights’ (1990–91) 6 Issues in Law and Medicine 285.
weller
Article 25
733
based on stereotypical and often inaccurate views.217 The prohibition against discrimination on the basis of disability challenges such practices. Elderly people with disabilities are also more likely to experience discrimination in the provision of medical care, or be denied adequate medical treatment, food, and fluids.218 The reference to food and fluids in paragraph (f ) in particular appears to refer to the provision of basic palliative care. For example, in some nations, although the law may permit withdrawal of active care at the end of life (provided that to do so is in accordance with the wishes of the person), the withdrawal of basic life-sustaining care in the form of food and fluids is prohibited.219 The CRPD requires, at least, that the prevailing standard should apply to people with disabilities. In particular, the CRPD favours the wishes of the person with disability as the legitimate basis upon which decisions about health care and medical treatment should be made. In this manner, it steers a middle path between the argument that everything should be done to save the lives of people with disabilities, on one hand, and ‘quality of life’ arguments that see the lives of people with disability as ‘undignified, futile or even over-burdensome’ on the other.220
217 James E Wilkinson, ‘Disability Stereotypes, International Human Rights and the Groningen Protocol’s Recommendations for Ending Infants’ Lives’ (Position Paper, International Federation for Spina Bifida & Hydrocephalus 2009), available at: . 218 Arlene S Kanter, ‘The United Nations Convention on the Rights of Persons with Disabilities and its Implications for the Rights of Elderly People under International Law’ (2009) 25 Georgia State University Law Review 527. 219 eg see Medical Treatment Act 1986 (Vic) Australia. 220 Jacqueline Laing, ‘Food and Fluids: Human Law, Human Rights and Human Interests’ in Christopher Tollefsen (ed), Artificial Nutrition and Hydration (Springer 2008) 77.
weller
Article 26 Habilitation and Rehabilitation . States Parties shall take effective and ap1 propriate measures, including through peer support, to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life. To that end, States Parties shall organize, strengthen and extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services, in such a way that these services and programmes: a. Begin at the earliest possible stage, and are based on the multidisciplinary assessment of individual needs and strengths;
b. Support participation and inclusion in the community and all aspects of society, are voluntary, and are available to persons with disabilities as close as possible to their own communities, including in rural areas. . States Parties shall promote the develop2 ment of initial and continuing training for professionals and staff working in habilitation and rehabilitation services. . States Parties shall promote the avail3 ability, knowledge and use of assistive devices and technologies, designed for persons with disabilities, as they relate to habilitation and rehabilitation.
1. Introduction 2. Background 3. Travaux Préparatoires 4. Paragraph 1 (Chapeau) 4.1 ‘organize, strengthen and extend comprehensive habilitation and rehabilitation services’ 4.2 ‘particularly in the areas of health, employment, education and social services’ 5. Paragraph 1(a) 6. Paragraph 1(b) 7. Paragraph 2 8. Paragraph 3 8.1 Women, Children, Older Persons, and Migrants with Disabilities
734 737 739 745 750 755 756 757 760 761 762
1. Introduction The purpose of article 26 is to reaffirm the relevance of rehabilitation as a means for the full enjoyment of the right to the highest attainable standard of physical and mental health, the right to employment, the right to education, and the right to independent living of persons with disability and to highlight its significance for the promotion of social participation in all aspects of community life. The focus of article 26, as with article 25 CRPD, is on access to rehabilitation services and programmes (including, instrumentally, the development and bickenbach and skempes
Article 26
735
training of rehabilitation professionals, and the availability and provision of assistive devices and technologies). The provision frames these services and supports in terms of their desired outcome, namely: ‘maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life’.1 The provision also clearly expresses concern that these services and supports are not only available and provided multi- professionally, but are also voluntary and offered close to the individual’s own community. As will be seen in more detail below, article 26 was the product of considerable debate and controversy, in part because medical professions, and rehabilitation itself, were viewed by disabled persons’ organizations (DPOs) as emblematic of the kind of paternalism at the heart of the medical and charity models of disability.2 The presumption that people with impairments could, and should be ‘fixed’ to fit into the ‘normal’ world lies at the heart of the view that disability was entirely a personal misfortune, a tragedy that should elicit pity and motivate attempts (however futile) to cure the person. The social model of disability that arose in the 1970s and dominated the scene by the 1990s, was the animating force behind the political activism and scholarship that lead, ultimately to the CRPD itself. The social model soundly rejected the medical model, arguing that the physical, attitudinal, and social world created disability. Despite this scepticism about rehabilitation, from the perspective of human rights, disability activists and scholars, including those who participated in the drafting of the CRPD, fully realized the instrumental value of rehabilitation to enhance participation and full inclusion. The wording of article 26 raises a few interpretative issues that should be dealt with briefly at the outset. Article 26 addresses both rehabilitation and habilitation, to mark the distinction between services and supports that return an individual to a situation of independence, ability, inclusion, and participation—such as would be experienced prior to an injury or the onset of a health condition—as well as services and supports that bring the individual to maximal independence—in the case of children born with congenital impairments. Although this distinction is obvious and shapes how rehabilitation services and supports are provided, as a matter of terminology the distinction is rarely explicitly made within the rehabilitation professions themselves. Rehabilitation professionals identify their outcomes in more general terms of ‘optimizing functioning’ in order to achieve independence, ability, and participation, regardless of the circumstances or origins of the cause of the need for these services and supports or the age of the individual receiving the services.3 In this chapter, we will simply use the term ‘rehabilitation’ to cover all relevant supports and services. Article 26 offers a comprehensive notion of rehabilitation directed to attaining and maintaining ‘maximum independent, full physical, mental, social and vocational ability’.4 Although not explicit, this arguably includes what would normally be called health 1 Convention on the Rights of Persons with Disabilities (opened for signature 13 December 2006, entered into force 3 May 2008) 46 ILM 433. 2 See eg Renee Anspach, ‘From Stigma to Identity Politics: Political Activism among the Physically Disabled and Former Mental Patients’ (1979) 13 Soc Sci Med 765; John Gliedman and William Roth, The Unexpected Minority: Handicapped Children in America (Harcourt Brace Jovanovich 1980); H Hahn, ‘Public Support for Rehabilitation Programs: The Analysis of U.S. Disability Policy’ (1986) 1 Dis Soc 121; Michael Oliver, The Politics of Disablement (MacMillan Press 1990); Garry L Albrecht, The Disability Business: Rehabilitation in America (Sage 1992). 3 Thorsten Meyer et al, ‘ISPRM Discussion Paper: Proposing a Conceptual Description of Health-related Rehabilitation Services’ (2014) 46 J Rehabil Med 1. 4 Art 26(1) CRPD.
bickenbach and skempes
736
Habilitation and Rehabilitation
services, but extends far beyond health into social and vocational domains. This is also very much in line with the modern characterization of rehabilitation. In the World Report on Disability, for example, the World Health Organization (WHO) and the World Bank defined rehabilitation as ‘a set of measures that assist individuals who experience, or are likely to experience, disability to achieve and maintain optimal functioning in interaction with their environments’.5 The term ‘ability’ in article 26 CRPD may also raise an interpretative issue. In the rehabilitation literature, the consensus is that rehabilitation supports and services are either designed to enhance the intrinsic capacity of an individual—eg by building up muscle strength, or providing vocational training—or by making facilitating alterations in the individual’s environment—eg in the immediate environment by providing assistive devices and technology, or in the broader environment by altering, for example, the worksite environment to allow the individual to perform her or his job.6 As the World Report on Disability puts it: ‘Rehabilitation targets improvements in individual functioning— say, by improving a person’s ability to eat and drink independently. Rehabilitation also includes making changes to the individual’s environment—for example, by installing a toilet handrail.’7 It is more controversial whether any form of environmental modification for accessibility—such as fitting a ramp to a public building—should be counted as a rehabilitation intervention. Arguably it would be inappropriate to do so given the intended scope of article 9 on accessibility. If, however, rehabilitation services and supports address both the optimization of the individual’s capacity (eg by means of physical therapy) as well as making the individual’s immediate environment more accommodating (eg by means of occupational therapy interventions at a workplace), it is reasonable to argue that both kinds of interventions enhance an individual’s ‘full physical, mental, social and vocational ability’. In this chapter, we assume that rehabilitation supports and services optimize individual ability, across physical, mental, social, and vocational domains, both by enhancing capacity and by means of assistive technology (AT) or environmental modification, making the immediate environment more accommodating (assuming without discussion whether it is always conceptually possible to clearly distinguish the ‘immediate’ from the broader environment). Finally, the relationship between articles 26 and 25 concerning access to health services may also be a source of interpretative confusion. The inclusion in article 25 of the phrase ‘health-related rehabilitation’, as we shall see more fully below, can be interpreted as an attempt to distinguish between rehabilitation supports and services provided by health professionals, and within the context of the health system, from other rehabilitation services and supports, including social and vocational rehabilitation. It is not clear whether this distinction is intended to be institutional (ie under which ministry or department a particular service is provided, or how the service is funded) or more conceptual. In any event, in practice, the distinction is extremely difficult, if not impossible, to draw clearly, and 5 World Health Organization and The World Bank, World Report on Disability (World Health Organization 2011) 96 [World Disability Report]. 6 ibid. 7 ibid: this conception of rehabilitation within international disability policy goes back at least to the definition adopted in 1982 by the World Programme of Action concerning Disabled Persons which acknowledged that rehabilitation ‘can involve measures intended to compensate for a loss of function or a functional limitation (eg by technical aids) and other measures intended to facilitate social adjustment or readjustment’, see UN Doc A/37/351/Add 1 (15 September 1982) para 11.
bickenbach and skempes
Article 26
737
whatever the intentions of the drafters, there will inevitably be borderline services that can be argued to be jointly governed by articles 26 and 25. This chapter presents an analysis of the standards that safeguard the right to access and benefit from rehabilitation supports and services under the CRPD and examines how UN treaty-monitoring bodies, especially the CRPD Committee, have interpreted these standards. The chapter is divided into four sections. We first present the travaux préparatoires and a brief history of the drafting of article 26 and comment on the politics behind its formulation during the treaty negotiation process, focusing in particular on the putative distinction between ‘medical rehabilitation’ and rehabilitation sans phrase. We then examine the content of article 26 by subsection and salient clauses. Here, the discussion focuses on the standards and relevant interpretations of provisions within two particularly common contexts related to rehabilitation: health and employment. We also link article 26 with other articles of the CRPD to briefly explore the potential synergies to increase the scope and progressive effect of article 26 in context. Given the near absence of jurisprudence or academic comment on the right to rehabilitation, we discuss only a few representative violations based on UN treaty-monitoring body communications and case law. We conclude with challenges and potential solutions in the global implementation of the right to access and benefit from rehabilitation supports and services.
2. Background Although article 26 CRPD is the clearest expression of a human right available to persons with disabilities to access rehabilitation supports and services, for the purposes of the United Nations, the right is not new. Most closely linked to article 26, given the similarity in language, is Rule 3 of the 1993 United Nations Standard Rules on the Equalization of Opportunities for Persons with Disabilities,8 under the heading of ‘Preconditions for Equal Participation’ (anticipated by similar statements in the World Programme of Action Concerning Disabled Persons 19839 and the UN Decade of Disabled Persons 1983– 9210). Although not framed as a human right as such, the Standard Rules set the stage for the instrumental interpretation of rehabilitation that figures prominently in the travaux préparatoires. The Standard Rules defined rehabilitation as: . . . a process aimed at enabling persons with disabilities to reach and maintain their optimal physical, sensory, intellectual, psychiatric and/or social functional levels, thus providing them with the tools to change their lives towards a higher level of independence. Rehabilitation may include measures to provide and/or restore functions, or compensate for the loss or absence of a function or for a functional limitation. The rehabilitation process does not involve initial medical care. It includes a wide range of measures and activities from more basic and general rehabilitation to goal- oriented activities, for instance vocational rehabilitation.11
8 Standard Rules on the Equalization of Opportunities for Persons with Disabilities, UNGA Res 48/96 (20 December 1993) [Standard Rules]. 9 World Programme of Action Concerning Disabled Persons, UNGA Res 37/52 (3 December 1982) [World Programme of Action]. 10 ibid. The UN General Assembly proclaimed 1983–92 as the United Nations Decade of Disabled Persons in order to provide a time frame during which governments and organizations could implement the activities recommended in the World Programme of Action. 11 Standard Rules (n 8) para 23.
bickenbach and skempes
738
Habilitation and Rehabilitation
The first articulation of the right to rehabilitation can be traced to the principles of the UN Co-ordinated International Program for the Rehabilitation of the Physically Handicapped adopted in 195212 which recognized that: . . . the handicapped person is an individual with full human rights, which he shares in common with the able-bodied, and that he is entitled to receive from his country every possible measure of protection, assistance and opportunity for rehabilitation.13
Although rehabilitation for persons with disabilities was not featured in the International Covenant on Economic, Social and Cultural Rights (ICESCR), which was adopted in 1966 and went into force a decade later, General Comment 5 of the CESCR Committee responsible for the oversight of the ICESCR formally acknowledged that: The right to physical and mental health also implies the right to have access to, and to benefit from, those medical and social services—including orthopaedic devices—which enable persons with disabilities to become independent, prevent further disabilities and support their social integration. Similarly, such persons should be provided with rehabilitation services which would enable them ‘to reach and sustain their optimum level of independence and functioning’. All such services should be provided in such a way that the persons concerned are able to maintain full respect for their rights and dignity.14
This acknowledgement was reiterated in article 23 of the Convention on the Rights of the Child.15 Several other international political and programmatic instruments, including several declarations, have explicitly mentioned rehabilitation services in the context of protections for persons with disability, especially within the general scope of the human right to healthcare.16 Outside of the sphere of healthcare, rehabilitation has been referred to in the International Labour Organization’s (ILO) Convention 159 on Vocational Rehabilitation and Employment of Disabled Persons.17 The ILO Convention, which was the first binding instrument to mention persons with disabilities,18 creates a set of obligations for states to devise policies and adopt appropriate measures to enable persons 12 United Nations Economic and Social Council (ECOSOC), ‘Report to the Economic and Social Council on the eighth session of the Social Commission’ UN Doc E/2247 E/CN 5/287 (2 June 1952). 13 A Co-Ordinated International Programme for the Rehabilitation of the Physically Handicapped Persons, World Health Organization Executive Board Resolution 9/65 UN Doc E/CN 5/259/Add 1 (11 January 1952). 14 Committee on Economic, Social and Cultural Rights (CESCR), ‘General Comment No 5: Persons with Disabilities’ UN Doc E/1995/22 (9 December 1994) para 34. 15 Art 23 Convention on the Rights of the Child (opened for signature 20 November 1989, entered into force 2 September 1990) 1577 (CRC); see also Committee on the Rights of the Child, ‘General Comment No 15 on the Right of the Child to the Enjoyment of the Highest Attainable Standard of Health (art 24)’ UN Doc CRC/C/GC/15 (17 April 2013). 16 Declaration on the Rights of Mentally Retarded Persons, UNGA Resolution 2856(XXVI) (20 December 1971), para 2 declares that ‘the mentally retarded person has a right to proper medical care and physical therapy and to such education, training, rehabilitation and guidance as will enable him to develop his ability and maximum potential’. Declaration on the Rights of Disabled Persons, UNGA Res 3447(XXX) (9 December 1975) para 6, reaffirms disabled persons’ ‘right to medical, psychological and functional treatment, including prosthetic and orthotic appliances, to medical and social rehabilitation, education, vocational training and rehabilitation, aid, counselling, placement services and other services which will enable them to develop their capabilities and skills to the maximum and will hasten the processes of their social integration or reintegration’. 17 Convention (No 159) concerning vocational rehabilitation and employment (disabled persons), (opened for ratification 20 June 1983, entered into force 20 June 1985) 1401 UNTS 23439 [ILO Convention]. 18 Theresia Degener and Andrew Begg, ‘From Invisible Citizens to Agents of Change: A Short History of the Struggle for the Recognition of the Rights of Persons with Disabilities at the United Nations’ in Valentina della Fina, Rachele Cera, Giussepe Parmissiano (eds), The United Nations Convention on the Rights of Persons with Disabilities: A Commentary (Springer 2017) 1, 9.
bickenbach and skempes
Article 26
739
with disabilities to secure, retain, and advance in employment. It requires states to make vocational rehabilitation services available to disabled people living in rural areas19 and to ensure the availability and training of professionals involved in the process of vocational training and re-integration of people with disabilities.20 Most importantly, it compels governments to actively involve disabled persons organizations in the design and implementation of vocational rehabilitation policies and programmes.21
3. Travaux Préparatoires While in international human rights law generally the right to rehabilitation has been seen as a part of the right to health,22 in the context of disability, rehabilitation and medical care have been treated as very much distinct. This is certainly true in the definition of rehabilitation in the Standard Rules (‘. . . the rehabilitation process does not involve initial medical care . . .’).23 Nonetheless, even in the Standard Rules, many of the services identified (eg restoring functions) would in practice be identified as ‘medical’ in the broadest sense. This ambivalence about what rehabilitation services are—and what they are not—has characterized the development of the right to rehabilitation as it applies to persons with disabilities. Certainly, in the context of disability studies literature generally, rehabilitation and the rehabilitation ‘industry’ have not been favourably viewed,24 making the notion of a human right to rehabilitation somewhat politically fraught. Even so, during the drafting stage of the Convention—beginning with the third session of the Ad Hoc Committee on the Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities (hereafter ‘Ad Hoc Committee’), rehabilitation was discussed under the rubric of the right to health (article 21 CRPD). During the third session of the Ad Hoc Committee, the debate centred around the definitional issue of how medical rehabilitation was different from vocational and social rehabilitation, and in particular how the goals of these different sets of supports and services might be differently enunciated.25 This opened the issue as to whether, indeed, there should be a separate article for rehabilitation at all. Israel and India joined with the European Union (EU) in support of the view that rehabilitation services constitute—in the spirit of the Standard Rules ‘preconditions for equal participation’—a means to enable persons with disabilities to enjoy full social participation and inclusion in the community. This interpretation would set these services apart from medical care, the parameters of which are far more focused on biological functioning, arguing thereby for the need to have two articles in the Convention, one dealing explicitly with health services, the other with rehabilitation in this broad sense.26 This 20 21 Art 8 ILO Convention (n 17). Art 9 ibid. Art 5 ibid. 23 CESCR General Comment 5 (n 14) para 34. Standard Rules (n 8). 24 Albrecht (n 2). 25 This can be attributed to the fact that when compiling proposals for a draft Convention some members of the Working Group believed that rehabilitation was much broader than health and should be thus dealt with in a separate article to avoid over-medicalizing the term. They, therefore, suggested clarifying relevant terms in draft Art 3 on definitions; see Ad Hoc Committee, ‘Report of the Working Group to the Ad Hoc Committee’ UN Doc A/AC.265/2004/WG 1 Annex 1 (27 January 2004). 26 Ad Hoc Committee, ‘Daily summary of discussions related to Article 21—‘Right to Health and Rehabilitation’— Third session (1 June 2004), available at: . 19 22
bickenbach and skempes
740
Habilitation and Rehabilitation
view was further supported by the delegates from Mexico, Australia, Namibia, Bahrain, Kenya, Guatemala, Uganda, Thailand, Jordan, Kuwait, Yemen, Peru, Palestine, Russia, and Australia, while the delegates from Ireland and Canada suggested that article 21 should maintain its focus on ‘medical rehabilitation’.27 The representative of WHO reminded delegates that in low and medium income countries there is a profound lack of availability of any form of rehabilitation services, and an important opportunity would be lost if participating states were not formally committed to scaling-up or strengthening rehabilitation services within their health systems, given that in most countries this constitutes the most well-resourced sector.28 This view was also maintained by the representative from Cameroon who identified the need for the Convention to deal specifically with medical rehabilitation, which differs from social and vocational rehabilitation.29 Non-governmental groups and DPOs argued that rehabilitation is a process that aims at a goal much broader than that of ensuring the right to the highest attainable standard of physical and mental health. Rehabilitation supports and services, they argued, enable people with disabilities to achieve and maintain functioning and independence. Representatives of both the International Disability Caucus (IDC) and Rehabilitation International (RI) expressed the need to create a separate article on the right to habilitation and rehabilitation, making the point that even broadly interpreted, the right to health cannot adequately capture the full range of rehabilitation services required by persons with disabilities.30 In the same vein, Disabled Peoples’ International (DPI) supported separating the two articles, making reference to the separation of Rules 2 (Health) and 3 (Rehabilitation) in the Standard Rules.31 DPI also recommended strengthening the then draft article 21 by adding ‘peer support’, a notion of considerable importance across the disability community32 while Handicap International and People with Disability Australia supported proposals to introduce explicit references to ‘community-based rehabilitation’ as a key ingredient of efforts to raise disability awareness.33 At this stage in the debate over article 21(the first draft version on rehabilitation) there was a move to clearly formulate a notion of rehabilitation that was more aligned with the disability community and the expressed wishes of major DPOs and international NGOs. This was an opportunity for the global community to envision a new model of rehabilitation, representing a radical departure from the public’s perception of professional practices clustered under the term ‘rehabilitation’, which seemed to suggest that the only relevant service persons with disability can be offered was to change them to fit better into the physical, human-built, and social world as it is, rather than changing the world to accommodate their impairments. Although a public perception, it is not clear that this was the general view of rehabilitation professionals themselves, many of whom were disability advocates. Indeed, organizations such as RI, the world’s largest rehabilitation advocacy organization, emphasized in many submissions to the Ad Hoc Committee that the rehabilitation professionals, as a group, were fully committed to the empowering notion of rehabilitation, in line with the social model of disability that animated the Convention as a whole. ibid. Ad Hoc Committee, ‘Daily summary of discussions related to Article 21—‘Right to Health and Rehabilitation’— Third Session (2 June 2004), available at: . 29 30 31 32 33 ibid. ibid. ibid. ibid. ibid. 27 28
bickenbach and skempes
Article 26
741
The current version of article 26 therefore began life as draft ‘article 21 bis: Habilitation and Rehabilitation’. This was based on proposals submitted by the EU and IDC and was formally presented by the facilitator during the sixth session of the Ad Hoc Committee.34 Despite the draft wording, however, the underlying issue of delineating rehabilitation supports and services from healthcare remained in the foreground of the on-going discussions and featured prominently in the interventions of both NGOs and DPOs. At the sixth session of 8 August 2005, the representative from Chile argued in favour of the proposed text and supported the separation of health and rehabilitation.35 The delegate insisted that rehabilitation constitutes a discrete right of persons with disabilities, and as such deserves a separate article.36 Other delegates were less convinced, in part because of a reluctance to identify a ‘right to rehabilitation’ at all—given the operating assumption of the Ad Hoc Committee that the Convention would create no new rights.37 The right to health had been internationally recognized—for example in article 12 ICESCR38—but this was not so with the right to rehabilitation. New Zealand and Thailand (with Canada in support) suggested that the non-health aspects of rehabilitation could be interspersed among existing articles—living independently, education, accessibility, and work inter alia—while health-related rehabilitation should be kept separate since there was a recognized right to services that were health-related.39 The Chair, Ambassador Don MacKay, who had only recently retired as the head of RI, asked for clarification how ‘health related rehabilitation’ or ‘medical rehabilitation’ differed from other forms of rehabilitation, and if a separate article on rehabilitation were to be agreed to, whether it would still be necessary to refer to medical rehabilitation in the draft Convention.40 In reply, Costa Rica argued that a separate article was unnecessary since as long as one adopts a broad definition of health, such as the WHO’s 1946 definition of ‘complete physical, mental and social well-being’,41 all rehabilitation services would be, in that sense, included within the ambit of health services.42 Costa Rica’s suggestion was not taken up and nearly every delegate argued in favour of separate articles on rehabilitation and health, but including health rehabilitation under the latter rubric.43 34 Ad Hoc Committee, ‘Sixth session—Consolidation of proposals submitted by the facilitator’, available at: . 35 Ad Hoc Committee, ‘Daily Summary of discussions at the sixth session’ (8 August 2005), available at: . 36 ibid; the delegate stated that ‘Rehabilitation is a right of persons with disabilities, belongs in a separate article, and should be defined in Article 3’. 37 ibid; speaking on behalf of the European Union, the United Kingdom reminded the Committee that the goal of EU’s proposed Article 21 bis was to cover all aspects of habilitation and rehabilitation as implementing measures with the aim of realising existing rights and that the EU did not want to create a separate or new right of rehabilitation. 38 Art 12, International Covenant on Economic, Social and Cultural Rights (ICESCR), opened for signature 16 December 1966, entered into force 3 January 1976 993 UNTS 3. 39 Ad Hoc Committee (n 35). 40 ibid; Ambassador MacKay asked governments and other delegates ‘If there were a separate article on rehabilitation, would it still be necessary to refer to medical rehabilitation in the article on the right to health.’ 41 Preamble to the Constitution of WHO as adopted by the International Health Conference, New York 19 June–22 July 1946. 42 Ad Hoc Committee (n 35). 43 ibid; eg Kenya supported separate articles and endorsed Chile’s proposal to delete all references to rehabilitation from draft article 21; in the same vein, Russia called for separate articles in line with the Standard Rules and India, Nigeria, Argentina, Uganda, and Ukraine supported the drafting of a separate article on Rehabilitation that would cover its social and occupational aspects more clearly. Morocco, although in favour of separating rehabilitation from health, maintained the view that ‘the medically related aspects of rehabilitation have to go under the health article’.
bickenbach and skempes
742
Habilitation and Rehabilitation
Although there was agreement for separate articles, the delegates were wary of implying that there should be a ‘right to rehabilitation’. In the afternoon session of 8 August 2005, the EU delegate made the point that rehabilitation should be seen as a collection of services and supports that enable or facilitate people with disabilities in enjoying all of their human rights; moreover, the EU would only assent to a separate article on rehabilitation under this understanding.44 The Chair assured the delegates that although a few delegations had indeed called for the recognition of a separate right, ‘it is generally understood that no separate right should be created’.45 The delegate from Israel captured the general consensus that a separate article was warranted and that a clear distinction could be made between ‘medical and paramedical rehabilitation’ (involving the functioning of the body) and ‘psycho-social rehabilitation’ (dealing with the wider functioning in the community). Medical rehabilitation could be incorporated under health, whereas psychosocial rehabilitation belonged in a separate article on rehabilitation.46 On this issue, the NGOs and DPOs spoke with one voice: although health care is as important for persons with disabilities as for everyone else, rehabilitation may be a lifelong requirement for people with disabilities and should be removed from the context of health or medicine. So understood, there should be two articles, although, in order to reiterate the consensus view, while member states have an obligation to provide rehabilitation services and supports to enable people with disabilities to be independent and fully participating, the Convention should not recognize a new right to rehabilitation, over and above the right to the highest attainable standard of physical and mental health.47 Or as the delegate of National Human Rights Institutions put it, ‘rehabilitation is not an end in itself but a means’.48 Given the general scepticism about the potential paternalism of rehabilitation professionals, described above, RI was more cautious. The delegate from RI made it clear that as ‘rehabilitation’ is a term that, more often than not, is understood through the lens of medical care, general reference to rehabilitation in an article on the right to health would be perceived as an endorsement of the medical approach of disability, a violation of the inherent dignity of persons with disabilities.49 Instead, it supported a stand-alone article on non-health rehabilitation by emphasizing its participatory, cross-sectoral approach in addressing the needs of people with disability holistically and over the life course. For its part, the WHO noted that rehabilitation has always been viewed as an inseparable component of health care50 and the fact that there is a large unmet need for comprehensive rehabilitation in low and medium resource countries bolsters their long- term commitment—one that both the ILO and UNESCO had affirmed—to support the delivery of rehabilitation through the mechanism of Community Based Rehabilitation. In part because of this the WHO, in later debates, came to reject the call for two articles, arguing that leaving out rehabilitation services under the rubric of health would compromise them, especially in developing countries where these services, unlike health services, were thought to be luxuries they could not afford.51 Moreover, the WHO argued 45 46 ibid. ibid. ibid. ibid; the Chair referred to the right to ‘rehabilitation of health’ in the Convention on the Rights of the Child and quoted also General Comment 5 on Art 12 of the CESCR, which is inclusive of social aspects as it emphasizes social integration. He further emphasized that the delegates had agreed on the obligation of states to make available habilitation and rehabilitation services, provided this is not cast as a right to rehabilitation. 48 49 50 ibid. ibid. ibid. 51 Ad Hoc Committee, ‘Daily summary of discussion at the sixth session’ (12 August 2005), available at: . 44 47
bickenbach and skempes
Article 26
743
that it is simply artificial to distinguish the so-called ‘medical rehabilitation’ service to prevent complications arising from an injury from the ‘non-health rehabilitation’ service that addresses the functioning problems people with chronic or long term health problems confront.52 In response, the Canadian delegate suggested this example: ‘A carpenter begins losing his/her sight, and an eye doctor provides treatments to preserve or restore the vision; this is medical rehabilitation. At the same time, the Convention should ensure that the carpenter will be taught techniques to continue doing carpentry work, such as mobility orientation, etc; this is social rehabilitation, or adaptation, or independent living, and takes place outside the medical process and the health care system.’53 In the face of examples such as this, the majority of delegates seemed to be in agreement that a distinction between health and non-health rehabilitation was indeed viable and article 21(bis) was proposed for discussion during the seventh session54 under the following terms: Article 26—Habilitation and rehabilitation 1. States Parties shall take effective and appropriate measures to enable persons with disabilities to attain their maximum independence, fullest physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life. To that end, States Parties shall organize, strengthen and extend comprehensive habilitation and rehabilitation services, particularly in the areas of health, employment, education and social services, in such a way that: (a) Habilitation and rehabilitation services and programmes begin at the earliest possible stage, and are based on the multidisciplinary assessment of individual needs; (b) Habilitation and rehabilitation services and programmes support participation and inclusion in the community and all aspects of society, and are available to persons with disabilities as close as possible to their own communities, including in rural areas. 2. States Parties shall promote the development of initial and continuing training for professionals and staff working in habilitation and rehabilitation services.
Much of this language—including the important subsections (a) and (b) that specified how these services must be delivered to meet human rights standards—reflected the similar qualifications found in the Standard Rules. The other provisions reflected the consensus reached during the sixth session. Subsequent discussions during the seventh and eighth sessions revolved around the issue of decentralization of rehabilitation services. Argentina argued that the article should highlight a rural and community focus for these services, while South Africa, Costa Rica, Chile, and Uganda, argued that there is a fundamental connection between rehabilitation and the right to inclusion that must be explicitly acknowledged. The discussions emphasized the cross-sectorial character of rehabilitation and its essential role as an enabler of social participation. This led to an agreement that the article should make it clear that rehabilitation services must be provided by multidisciplinary teams and offered to people where they live. Interestingly, the role of assistive technology, which did not appear in the
53 ibid. ibid. UNGA, Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, ‘Letter dated 7 October 2005 from the Chairman to all members of the Committee’ UN Doc A/AC 265/2006/1 (14 October 2005). 52 54
bickenbach and skempes
744
Habilitation and Rehabilitation
text of draft article 21(bis), was only briefly brought up by delegates from IDC and Kenya in their submissions for amendments to the draft article presented by the facilitator.55 Towards the end of the negotiations, following the pertinent renumbering, the article became article 26 and the delegates from Kenya, Yemen, and IDC highlighted the importance for any service provision to be grounded in active, informed and meaningful involvement and consent of the service users.56 Though not explicitly mentioned in article 26, informed consent was an essential principle in draft article 21, in which rehabilitation was included alongside health. In their proposal for amendments to draft article 21 Israel suggested that the new article on rehabilitation should create an obligation on states to prohibit the imposition of any programme of rehabilitation against the wishes of the person with disability,57 a view strongly supported by RI.58 By contrast, China argued against the inclusion of any reference to informed consent in article 26.59 At an afternoon session of the seventh session the Chair MacKay, pointed out that, although free and informed consent was implicit in the draft version of article 3 CRPD (now article 2) there was nonetheless good support for its inclusion in draft article 26. Even so, he cautioned that some jurisdictions did not legally require informed consent for the general population with respect to the provision of health care or rehabilitation services, pointing out that these countries would resist such change.60 Subsequently, the requirement of informed consent appeared in the final text with the weaker wording that rehabilitation services and programmes must be voluntary. During the same session there was broad support for several proposals made by the IDC on suggestions for revision of the text of article 26, including the insertion of guarantees for the provision of assistive technology and the right to privacy and informed consent.61 Canada suggested the inclusion of ‘peer support’ in the first sentence of the article, the insertion of the world ‘all’ when referring to persons with disabilities in order to indicate a truly inclusive approach to rehabilitation, as well as the elimination of references to gender-sensitive rehabilitation.62 Representing the EU, Austria stressed the need for rehabilitation services and programmes to be designed and implemented with the active involvement and participation of persons with disabilities and argued in favour of an explicit reference to this requirement as it would help reduce the tension surrounding the modus operandi of rehabilitation between professionals and service users. This suggestion was considered by delegates as having been sufficiently covered by article 4(3) CRPD.63 The delegate from Jordan proposed that in article 26(1)(a) CRPD, the reference to a ‘multidisciplinary approach’ should be extended to include the assessment of the needs and strengths of the person so as to ensure an individualized response to rehabilitation needs. The Russian Federation also welcomed IDC’s suggestions as they successfully combined the two strategic goals and approaches of rehabilitation: improvement of functioning and the promotion of social participation and inclusion. Delegates were equally supportive of the IDC’s proposal to include a new paragraph that would detail 55 Ad Hoc Committee, ‘Background documents of the seventh session, Comments, proposals and amendments submitted electronically’ (16 January–3 February 2006), available at: . 56 Ad Hoc Committee, ‘Daily Summary of discussions at the seventh session’ (25 January 2006), available at: . 57 UNGA, ‘Report of the third session of the Ad Hoc Committee’, UN Doc A/AC 265/2004/5 (9 June 2004). 58 59 60 61 Ad Hoc Committee (n 28). Ad Hoc Committee (n 55). ibid. ibid. 62 63 ibid. ibid.
bickenbach and skempes
Article 26
745
states’ obligation regarding the provision of assistive technologies. The proposal to add a paragraph on privacy, however, was not taken up since issues concerning privacy of rehabilitation-related information had already been addressed in article 22(2) CRPD.64 In this seventh session of the Ad Hoc Committee, article 26 was revised and re- worded to become very close to its final form. Although the requirement of multidisciplinary assessment of both individual needs and strengths was added, access to assistive technology was not, as it had not appeared in the agreed text65 until the conclusion of the eight session.66 The seventh session version of article 26 was perceived by DPOs as a good starting point for a rights-based approach to rehabilitation in which people with disabilities are not defined as objects of professional intervention but as holders of rights to make decisions as to how, when and where they wish to optimize their functioning.67 Although in a separate comment, Mental Disability Rights International expressed concern that rehabilitation in the new article was not formulated as a right, pointing out that this might require highlighting the need for rehabilitation more explicitly in both articles 25 on health and 27 on employment in order to ensure that rehabilitation is, at least indirectly, protected as a human right.68 This view, however, was distinctly a minority position and by the end of the eighth session in December of 2006, article 26, essentially in its current form, was proposed for adoption by the Ad Hoc Committee.69
4. Paragraph 1 (Chapeau) A brief methodological note is pertinent at the outset of this analysis: The primary source of interpretative analysis for the various components of article 26 is the concluding observations (CO) of the Committee on the Rights of Persons with Disability (hereinafter the Committee), the body of independent experts that monitors implementation of the Convention by states parties. States parties are obliged to submit regular reports on the status of implementation, initially within two years of ratifying the Convention and every four years thereafter. Article 26 has received, relatively speaking, very little Committee comment, although on some issues there is enough to get a clear idea of the Committee’s views. Since September 2013, and starting with periodic reports due in 2014, the Committee has adopted a simplified reporting procedure, in part to receive more targeted periodic reports, in which it prepares a list of issues (LOIs) to which states parties respond. Both of these documents can aid in interpretation. Also useful is the Guidelines on periodic reporting (Reporting Guidelines) that specifies (in the form of statistical and qualitative indicators) which measures states parties should report on ibid. UNGA, ‘Report of the Ad Hoc Committee on its seventh session’, UN Doc A/AC 265/2006/2 (13 February 2006). 66 UNGA, ‘Interim report of the Ad Hoc Committee on its eighth session’, UN Doc A/AC 265/2006/4 (1 September 2006). 67 Ad Hoc Committee, ‘NGO Comments on the draft text, International Disability Caucus, IDC final statement on Article 26’, available at: . 68 Ad Hoc Committee, ‘NGO Comments on the draft text, Mental Disability Rights International, Intervention on Article 26’, available at: . 69 UNGA, ‘Final report of the Ad Hoc Committee’ UN Doc A/61/611 (6 December 2006). 64 65
bickenbach and skempes
746
Habilitation and Rehabilitation
with regard to implementing article 26.70 Further clarifications concerning the interpretation of article 26 can be derived from the very limited case law on rehabilitation viewed from the human rights perspective, as well as a range of other sources reflecting the international understanding of relevant aspects of rehabilitation services and support provision, including access. The Reporting Guidelines summarize the core obligations of signatories under article 26 and suggest the approach that the Committee wishes to take regarding the overall chapeau of article 26. States parties are obliged to report on the measures they have taken to ensure that rehabilitation services, supports, and programmes are available to persons with disabilities to enable them to achieve the central outcome stated in article 26, namely: ‘to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life’. The Guidelines further qualify this obligation by emphasizing that the relevant rehabilitation services must, first, be designed for, and with the participation of, persons with disabilities, secondly, designed so as to take into account the human rights-based approach to disability, and, finally, these services and programmes must be accessible, comprehensive, and cross-sectoral.71 The requirements of ‘comprehensive and cross-sectoral’ underscores the theme that article 26 encompasses the broad range of social and vocational rehabilitation for independent living, personal assistance and assistive technology, and other services that are typically provided across sectors.72 Although the Committee has expressed concern about the absence of rehabilitation services in general,73 these additional requirements raise the question whether a country’s article 26 obligations would be fulfilled if their rehabilitation services and programmes adequately achieved the expressed outcomes for persons with disabilities, but were not explicitly designed for and with the participation of persons with disabilities, or if they had not been predicated on the human rights approach. In fact, it is very unlikely that any country’s rehabilitation system has been specifically designed or redesigned ‘in close collaboration with organizations representing persons with disabilities’. So, if this is indeed an essential component of the chapeau, most countries would be in violation ab initio. But clearly the intent here is not to require countries to create special, parallel, rehabilitation services for persons with disabilities, but rather to create these services informed by the their needs and requirements, including for example, the need for early intervention, especially for children.74 The Committee on only one occasion returned to the requirement that rehabilitation services be designed for, and with the participation of, persons with disabilities, especially where there is a national plan in place governing reforms in rehabilitation.75 But more typically the Committee makes the less stringent recommendation that state parties bring persons with disabilities for consultation with 70 CRPD Committee, ‘Guidelines on periodic reporting to the Committee on the Rights of Persons with Disabilities, including under the simplified reporting procedures’ UN Doc CRPD/C/3 (2 September 2016), [CRPD Reporting Guidelines]. 71 ibid para 167. 72 CRPD Committee, ‘Concluding Observations on the Initial Report of Italy’ UN Doc CRPD/C/ITA/ CO/1 (6 October 2016) para 67 [CO Italy]. 73 CRPD Committee, ‘Concluding Observations on the Initial Report of Ukraine’ UN Doc CRPD/C/ UKR/CO/1 (2 October 2015) para 49 [CO Ukraine]. 74 CRPD Committee, ‘Concluding Observations on the Initial Report of Bolivia’ UN Doc CRPD/CBOL/ CO/1 (4 November 2016) para 60 [CO Bolivia]. 75 CO Italy (n 72) para 68.
bickenbach and skempes
Article 26
747
respect to the quality and accessibility of services.76 The Committee has addressed the parallel consideration that there should be no discrimination in the provision of rehabilitation services, but only with respect to discrimination on the basis of citizenship and immigration status.77 The Committee’s interpretation of what it means for rehabilitation services to be provided in accordance with ‘the human rights-based approach to disability’, by contrast, has been very clearly enunciated. The Committee has been very clear that if policies on the provision of rehabilitation over-emphasize health issues or if the services depend on a medical assessment then the country is deemed to not have adopted a rights-based approach.78 Rehabilitation must seek to promote not merely physical and mental development, but also housing, social and vocational development, with the expressed aim of integration in the labour force and society.79 That rehabilitation should focus more broadly on independence and full participation is, it should be noted, a consistent theme in the quality of care literature in rehabilitation.80 Moreover, because strengthening rehabilitation in countries, especially low-and medium-resource countries, requires a step-by-step process based on available resources, it is clear that article 26, like other statements of human rights in the socio-economic domain, is intended to be progressively implemented. In one concluding observation the Committee even more explicitly characterized the human rights approach to rehabilitation as one that does not focus on ‘physical or deficiency-related aspects of persons with disabilities’, or ignores areas such as education and employment.81 The requirement to assess both ‘individual needs and strengths’ is explicitly mentioned in paragraph 1(a) and we will return to this below, but here the Committee’s comment was in response to Colombia’s approach of delegating some of its obligations related to rehabilitation to a private company that neither consulted with persons with disabilities nor understood their concerns. Although this does not explicitly 76 ibid. CRPD Committee, ‘Concluding Observations on the Initial Report of Uruguay’ UN Doc CRPD/ C/URY/CO (31 August 2016) para 56; CRPD Committee, ‘Concluding Observations on the Initial Report of Ethiopia’ UN Doc CRPD/C/ETH/CO/1 (4 November 2016) para 58 [CO Ethiopia]; CRPD Committee, ‘Concluding Observations on the Initial Report of Slovakia’ UN Doc CRPD/ C/ SVK/ CO/ 1 (17 May 2016) para 72 [CO Slovakia]. 77 CRPD Committee, ‘Concluding Observations on the Initial Report of Dominican Republic’ UN Doc CRPD/C/DOM/CO/1 (8 May 2015) paras 48, 49 [CO Dominican Republic]; CRPD Committee, ‘Concluding Observations on the Initial Report of Armenia’ UN Doc CRPD/C/ARE/CO/1 (8 May 2017) para 47 [CO Armenia]. 78 CRPD Committee, ‘Concluding Observations on the Initial Report of Qatar’ UN Doc CRPD/C/QAT/ CO/1 (2 October 2015) para 47 [CO Qatar]; CRPD Committee ‘Concluding Observations on the Initial Report of Thailand’ UN Doc CRPD/C/THA/CO/1 (12 May 2016) para 41 [CO Thailand]; CO Armenia (n 77) para 45; CO Ukraine (n 73), para 48. 79 CRPD Committee, ‘Concluding Observations on the Initial Report of El Salvador’ UN Doc CRPD/C/ SLV/CO/1 (8 October 2013) para 54 [CO El Salvador]; CRPD Committee, ‘Concluding Observations on the Initial Report of Paraguay’ UN Doc CRPD/C/PRY/CO/1 (15 May 2013) para 61 [CO Paraguay]; CO Ukraine (n 73) para 48. 80 Tiago Jesus and Helen Hoenig, ‘Postacute Rehabilitation Quality of Care: Toward a Shared Conceptual Framework’ (2015) 96 Arch Phys Med Rehabil 960; Liza Iezzoni et al, ‘Quality Dimensions that most Concern People with Physical and Sensory Disabilities’ (2003) 163 Archi Int Med 2085; Joanna Fadyl, Kathryn McPherson, and Nicola Kayes, ‘Perspectives on Quality of Care for People who Experience Disability’ (2011) 20 Qual Safe Health Care 87; AG Lawthers et al, ‘Rethinking Quality in the Context of Persons with Disability’ (2003) 15 Int J Qual Health Care 287. 81 CRPD Committee, ‘Concluding Observations on the Initial Report of Colombia’ UN Doc CRPD/C/ COL/CO/1 (30 September 2016) para 58 [CO Colombia].
bickenbach and skempes
748
Habilitation and Rehabilitation
imply that a human rights approach to rehabilitation prohibits the outsourcing of these services to the private sector, it does mandate that the state regulate the provision of these services, whoever delivers them, in a manner consistent with human rights (ultimately the obligation rests on the state and it is against the state that the rights-holder can turn for satisfaction and implementation of the right). This rejection of a ‘deficit approach’ to rehabilitation—in which the potential and existing assets of an individual are not taken into account during assessment or when developing intervention plans—is well recognized in the rehabilitation literature. The notion of ‘person-centred’ care, for example, is central to modern approaches to the provision of rehabilitation,82 so that the human-rights perspective is incorporated into established professional standards for rehabilitation.83 The CRPD Committee has not as yet commented on what constitutes a ‘peer support’ service (the addition of which was strongly advocated for by many delegates to the Ad Hoc Committee). Broadly speaking, peer support refers to a supportive relationship between people who have a lived experience in common. Peer interventions can be delivered in one-on-one or group sessions during social activities or workshops by volunteers or can be facilitated by a trained health professional as part of a therapeutic plan or recovery process. While informal peer support is usually provided by family, friends and peers, formal peer support services are offered by grassroots community organizations or health and social service providers. Structured peer support within an organized clinical setting can involve programmes where peer support workers offer the opportunity for a supportive, empowering relationship. In the realm of healthcare, peer support has been defined as ‘the provision of emotional, appraisal and informational assistance by a created social network member who possess experiential knowledge of a specific behaviour or stressor or similar characteristics as the target population, to address a health-related issue of a potentially or actual stressed focal person’.84 Especially for those who acquire impairments later in life, people with disabilities may lack information about options available to improve their health and social participation. As a result, they become disempowered and unwilling or unable to express their needs and find solutions. By connecting people with similar impairments, but more experience dealing with them, peer support programmes facilitate information exchange and a way of comparing, and sharing their understanding of their experiences. The Committee has clearly identified peer support as an alternative to the medical model of mental health.85 There the Committee reaffirmed the views of Sherry Mead, a psychiatric survivor who has influenced the development of the peer support movement 82 See Sarah Dean, Richard Siegert, and William Taylor, ‘Interprofessional Rehabilitation: A Person-centred Approach’ (John Willey and Sons 2012). 83 Christoph Gutenbrunner, Anthony B Ward, and M Anne Chamberlain, ‘White Book on Physical and Rehabilitation Medicine in Europe (Revised November 2009)’ (2007) 45 Journal of Rehabilitation Medicine 1–48; 84 Cindy-Lee Dennis, ‘Peer Support within a Health Care Context: A Concept Analysis’ (2003) 40 Int J Nurs Stud 329. 85 CRPD Committee, ‘Concluding Observations on the initial report of Montenegro’ UN Doc CRPD/C/ MNECO/1 (22 Sept 2017) para 37; CRPD Committee, ‘Concluding Observations on the initial report of Kenya’ UN Doc CRPD/C/KEN/CO/1 (30 Sept 2015) para 46; CRPD Committee, ‘Concluding Observations on the Initial Report of China’ UN Doc CRPD/C/CHN/CO/1 (15 October 2012) para 38 [CO China] (recommending the States in all cases above to ‘develop a wide range of community-based services, including at the local level, that respond to the needs of persons with disabilities and respect their autonomy, choices, dignity and privacy and that include peer support and other alternatives to the medical model of mental health’).
bickenbach and skempes
Article 26
749
globally, and puts peer support in the political context of service delivery arguing that through peer support: We can build new community norms that replace the illness environments that have kept us trapped. Finally, we can conscientiously name and expose the cultural violence that caused us to end up in these institutions. If we can learn to tell our stories in new ways, we can create communities where the sanctioned outcomes include non-compliance to ‘mental patient’ identities or expectations, rejection of unhelpful treatment regimens, the questioning of overuse of medication, and speaking out about the prevalence of trauma and abuse. Finally, we can to call into question whose ‘problem’ it really is.86
If this statement is an accurate reflection of the Committee’s views about peer support then it is reasonable to argue that implicit in the recognition of peer support as an alternative or complementary to rehabilitation measures mandated in article 26 is the belief that, as with recovery from mental disorders, rehabilitation, and the achievement of independence and full inclusion is a choice and people with disabilities should be able to decide how, when and where they wish to optimize their functioning. In short, to fulfil their obligations under article 26, it is clear that states must ensure that peer support programmes are available to meet the needs of all groups of people with disabilities either as part of established government-funded, rehabilitation programmes or as standalone programmes offered by NGOs. In the former case it is important that such programmes are adequately funded and co-developed with persons with disabilities.87 The Committee has also not commented on the complex notion of ‘full physical, mental, social and vocational ability’ (and in particular whether ‘ability’ merely refers to the individual’s intrinsic capacity, or includes environmental supports). Finally, and more importantly, the Committee has not addressed what was perhaps the most contentious issue during the negotiations and the drafting process of the CRPD, namely whether the coverage of article 26 is wholly distinct from that of article 25. Specifically, the Committee has not as yet, either in its comments on article 26 or article 25, made any attempt to clarify how ‘health-related rehabilitation’ can operationally be distinguished from the rehabilitation services and programmes that fall under article 26 CRPD. Arguably, this need not be a troubling problem for the interpretation of article 26 since it is always open to the Committee to highlight a concern about access to ‘rehabilitation’ services, supports and programmes broadly construed simply by citing both provisions in tandem. In practice, however, the separation between health and non-health-related rehabilitation is operationally artificial and goes against the grain of sustained efforts to achieve the Sustainable Development Goals, including through ‘continuity of care’ and ‘integrated care’ across health and other sectors.88 We shall return to the general question of whether health-related rehabilitation is included in article 26 below. It is important to emphasize that the interpretative issue here is not whether article 26 implicitly or explicitly sanctions the ‘medicalization of rehabilitation’ by merging rehabilitation under healthcare—or by bringing it within the governance of the Ministry of 86 Sherry Mead, ‘Defining Peer Support’, available at: . 87 World Disability Report (n 5) 157–58. 88 Strengthening Integrated, People Centred Health Services, World Health Assembly WHO Doc WHA69/ 24 (28 May 2016).
bickenbach and skempes
750
Habilitation and Rehabilitation
Health. The point rather is that in practice rehabilitation interventions are effective when they are synergetic and complete. There is an abundance of evidence that if one kind of—call it ‘health-related rehabilitation service’—is not followed up by other services that are not clearly health-related but involve social or vocational rehabilitation, the individual may not profit at all from either the initial or subsequent services.89 Securing the human right to services identified in article 25 but not those in article 26, or vice versa, would not, as a matter of practicality, make it possible to achieve the desired outcome ‘to attain and maintain maximum independence, full physical, mental, social, and vocational ability, and full inclusion and participation in all aspects of life’. One might well argue that this is not really an interpretative problem since according to the Vienna Principle whereby ‘human rights are universal, indivisible, interdependent and interrelated’—explicitly adopted in the CRPD’s preamble paragraph (c)—would entail that states parties are obliged to implement both articles 25 and 26 together and in an interactive manner.90
4.1 ‘organize, strengthen and extend comprehensive habilitation and rehabilitation services’ The phrase ‘organize, strengthen and extend’ in the chapeau of paragraph 1 is unique in the CRPD (the more common phrase is ‘take appropriate measures’) and suggests that the drafters were concerned that the implementation of comprehensive rehabilitation services, supports and programmes may require more than discrete or piecemeal state action. Instead, the implicit message is that state parties must adopt a systems approach to the implementation of comprehensive rehabilitation. This obligation arises directly from the text of article 26, as the verb ‘to organize’ creates the requirement of a system or network of integrated rehabilitation services at the national level to ensure equal and uninterrupted access to effective rehabilitative support and treatment. Such a system must be developed in accordance with the principles set out in paragraphs article 26(1)(a) and (b) which are universal and apply to all countries irrespective of their level of development: comprehensiveness, timeliness, coordination, patient centredness, effectiveness, social outcomes orientation, autonomy, and proximity.91 The provision of rehabilitation must, so to speak, be systematized in accordance with these (and other human rights) principles in order to be truly rights-based and effective. This implicit message reflects another consistent theme, discussed in the travaux préparatoires above, that the CRPD drafters were reluctant to explicitly identify a human right to rehabilitation rather than acknowledge that these multi-sectorial health, employment, education, and social services and programmes are, jointly and in combination, essential means for and preconditions of the desired outcome of attaining and maintaining ‘maximum independence, full physical, mental, social and vocational ability, and full
89 Anne-Melte Momsen et al, ‘Multidisciplinary Team Care in Rehabilitation: An Overview of Reviews’ (2012) 44 J Rehabil Med 901. 90 Vienna Declaration and Programme of Action, UN General Assembly Resolution 48/121 UN Doc A/ CONF 157/23 (12 July 1993) Part 1 para 5. 91 Dimitrios Skempes and Jerome Bickenbach, ‘Strengthening Rehabilitation for People with Disabilities: A Human Rights Approach as the Essential Next Step to Accelerating Global Progress’ (2015) 94 Am J Phys Med Rehabil 823.
bickenbach and skempes
Article 26
751
inclusion and participation in all aspects of life’. This too argues for a systems approach to meeting states party obligations under both article 25 and 26. A systems approach ensures that the administrative boundaries between sectors, governmental agencies and service programmes do not stand in the way of providing people with disabilities with a comprehensive range of rehabilitation services needed for their full inclusion and participation in all aspects of life. Further evidence for this interpretation is the consistent reference in paragraph 1 to ‘comprehensive habilitation and rehabilitation’. Rehabilitation is ‘comprehensive’ when all relevant services and programmes are provided holistically, so as to respond to the human rights mandate of article 26.92 To achieve this, state parties need to re- engineer their service delivery platforms and orient them towards continuity and coordination of health and social care. This necessitates a properly resourced and well-functioning system with appropriate synergistic structures such as referral and information transfer mechanisms in place to ensure optimal selection, delivery, and reimbursement of person focused supports and services that are tailored around individual age-, gender-, and disease-specific needs.93 The CRPD Committee, in the context of recommending policies to implement comprehensive rehabilitation services and programmes has also consistently pointed to the need for a systems approach that links sectors, service agencies, financial support, and governance under a unifying, national legal framework.94 While firmly rejecting segregated services designed only for persons with disabilities,95 the Committee has made it clear that comprehensive rehabilitation that serves the interests of persons with disabilities involves reform in human, technical, and financial resources, at the systems level,96 and that, in particular, secure and stable funding mechanisms are an essential prerequisite for a sustainable system of comprehensive rehabilitation.97 In addition to the need to organize rehabilitation services, article 26 requires state parties to ‘strengthen’ rehabilitation services. The parameters and requirements of a ‘systems approach’ to strengthening health services and programmes in general have been developed by the WHO in terms of the so-called ‘six pillars’ of governance, financing, service delivery, information, workforce, and health products, and technologies.98 WHO has made note of the systems approach in several of its action plans and resolutions99 on strengthening comprehensive rehabilitation. WHO has advised integrating the provision of rehabilitation and AT into health systems and extending the linkages of the health sector with other sectors to avoid fragmentation, under-utilization and suboptimal delivery of
92 CO Colombia (n 81) para 59(b) (recommending that the state ‘make habilitation and rehabilitation services comprehensive and thus in line with the Convention’). 93 Juan Tello and Erica Barbazza, ‘Health Service Delivery: A Concept Note’, World Health Organization Regional Office for Europe (2015) 8. 94 CRPD Committee, ‘Concluding Observations on the initial report on Peru’ UN Doc CRPD/PER/CO/ 1 (9 May 2012) para 38; CO Qatar (n 78) para 48; CO Paraguay (n 79) para 62. 95 96 CO Italy (n 72) para 68. CO Thailand (n 78) para 52. 97 CO Slovakia (n 76) para 72. 98 WHO, ‘Everybody’s Business—Strengthening Health Systems to Improve Health Outcomes: WHO’s Framework for Action’ (WHO 2007). 99 Disability, Including Prevention, Management and Rehabilitation: Report by the Secretariat, World Health Assembly resolution A58 23 (25 May 2005) para 1(5); Disability—Report by the Secretariat, World Health Assembly resolution A66/12 (11 March 2013) para 25; Disability—Draft WHO global disability action plan 2014–2021: Better health for all people with disabilities—Report by the Secretariat, World Health Assembly resolution A67/16 (4 April 2014); World Health Organization, ‘Rehabilitation: Key for Health in the 21st century’ WHO Doc WHO/NMH/NVI/17.3, available at: .
bickenbach and skempes
752
Habilitation and Rehabilitation
rehabilitation services.100 The WHO and other UN agencies have, moreover, expressed their commitment in light of Goal 3 of the UN’s Sustainable Development Goals to ensure that improvements in both health and rehabilitation programming will not leave people with disabilities behind.101 The obligation of States to ‘strengthen’ rehabilitation services and programmes thus invites state parties to consider whether concrete measures to improve the six building blocks of the health system, which in most countries constitutes the most critical resource for the delivery of rehabilitation services, may provide an appropriate avenue for the incorporation of essential human rights principles in rehabilitation programming and the effective implementation of articles 25 and 26. The requirement to ‘strengthen’ rehabilitation services requires state parties to address the plethora of factors that compromise equitable access to rehabilitation services and which often remain invisible in public policy because of the low priority accorded to rehabilitation and disability in health and social policy agendas. No attempt is made to provide an exhaustive list here as these have been well documented in several UN agencies’ reports and the professional literature. Instead the following observations are made. First, in regards to barriers to equitable access to comprehensive rehabilitation services, article 26 does not contain an explicit provision with respect to the obligation of states to ensure persons with disabilities can participate in rehabilitation programmes on an equal basis with others, including through prevention of discrimination in service financing and delivery, although the principles of equality and non-discrimination have major implications for rehabilitation governance. The scope of equality guarantees and the way countries incorporate these in health and social policies may affect the level of access to rehabilitation programmes available to persons with disabilities.102 The human rights principle of non-discrimination obliges states to guarantee that human rights are exercised without discrimination of any kind, including on the basis of disability.103 Article 25 requires states to prevent the discriminatory denial of healthcare and services (including health-related rehabilitation) and protect persons with disability from being denied health insurance.104 This means that in the provision and financial coverage of rehabilitation there should be no exclusion or eligibility criteria except where clinically justified.105 In 100 WHO, Rehabilitation in Health Systems (WHO 2017), available at: [WHO Rehabilitation in Health Systems]. 101 See generally United Nations, ‘A new global partnership: Eradicate poverty and transform economies through sustainable development’ (United Nations 2013); UNGA, Report of the Open Working Group of the General Assembly on Sustainable Development Goals, UN Doc A/68/970 (12 August 2014). 102 Lisa Waddington, ‘Access to Healthcare by People with Disabilities in Europe—A Comparative Study of Legal Frameworks and Instruments (Part 3, Rehabilitation)’ (2015) Academic Network of Disability Experts, 24, available at: ; Sara Rosenbaum, Joel B Teitelbaum, and Katherine Hayes, ‘Crossing the Rubicon: The Impact of the Affordable Care Act on the Content of Insurance Coverage for Persons with Disabilities’ (2012) 25 Notre Dame JL Ethics & Pub Pol’y, 527; Sara Rosenbaum and Joel Teitelbaum, ‘A Lost Opportunity For Persons With Disabilities? The Final Essential Health Benefits Rule’ Health Affairs, 11 March 2013, available at: . 103 CESCR, General Comment No 20: Non-Discrimination in Economic, Social and Cultural Rights UN Doc E/C 12/GC/20 (2 July 2009) para 28; CESCR, General Comment No 5 (n 14) para 20. 104 Art 25 CRPD para f. 105 Although the CRPD Committee has not looked at the question of discrimination in rehabilitation access and coverage, the Committee on the Rights of the Child has expressed concern over regulations and laws that restrict legal access to rehabilitation for children with disabilities, see CRC Committee, ‘Concluding Observations: Egypt’ UN Doc CRC/C/EGY/CO/3-4 (15 July 2011) para 60, [CRC Observations Egypt]; see also CESCR, General Comment No 20 (n 98), para 33 (‘Denial of access to health insurance on the
bickenbach and skempes
Article 26
753
the Committee’s view, countries have an obligation ‘to adopt habilitation and rehabilitation programmes that target all persons with disabilities, irrespective of their impairment, gender or age’.106 This entails that professional or financial criteria should not be used in a restrictive manner to deny services to people with specific diagnoses, people who have failed to achieve predetermined clinical rehabilitation goals or those who show no clinical signs of progress in functioning.107 To ensure optimal levels of inclusion and meet their obligations under article 26(1) CRPD, state parties must concentrate action on strengthening rehabilitation governance by abolishing discriminatory policies and ensuring that essential health benefits and insurance packages cover the rehabilitation needs of people with disability irrespective of age, gender, country of origin, race, religion, and most importantly, actual and/or projected functioning status.108 Secondly, in regards to service delivery, the Committee is also clear on the application of reasonable accommodation in healthcare settings.109 Specifically, it has recognized in the case of Ethiopia the legal requirement to ensure ‘accessible participation of persons with disabilities in habilitation and rehabilitation services’.110 The state must ensure through proper regulation that both public and private rehabilitation facilities provide procedural-and age-appropriate accommodation in all official interactions and during professional consultations. This may include the provision of rehabilitation information in a format people with disabilities can understand (Braille, easy to read) or the provision of support by interpreters (sign language). WHO has provided directions on measures service providers and professionals should use to facilitate equal access to rehabilitation services, facilities, and information.111 A related factor associated with service delivery, that both researchers and advocates have tended to overlook, is the reality that article 22 provides the normative foundations for the protection of privacy of rehabilitation-related information of persons with disabilities on equal basis with others. When an individual is being accessed for rehabilitation services and supports, his or her privacy should be respected. Rehabilitation care involves many sensitive issues (disease prognosis, desired and predicted levels of functioning after the completion of the rehabilitation programme and so on) that are not widely discussed within families or communities, and rehabilitation professionals are often entrusted with very personal information by their patients. There is a clear obligation to respect privacy during consultations, examinations, and treatments but also during disability evaluation procedures. Rehabilitation service providers must also establish and implement policies and procedures to protect information from misuse, including through implementation of accessibility standards as a precondition to achieve substantive equality in the protection basis of health status will amount to discrimination if no reasonable or objective criteria can justify such differentiation.’) CO Ethiopia (n 76) para 58. Dimitrios Skempes, Gerold Stucki, and Jerome Bickenbach, ‘Health Related Rehabilitation and Human Rights: Analyzing States’ Obligations under the United Nations Convention on the Rights of Persons with Disabilities’ (2015) 96 Arch Phys Med Rehabil 167. 108 Anita Silvers and Leslie Francis, ‘Human Rights, Civil Rights: Prescribing Disability Discrimination Prevention in Packaging Essential Health Benefits’ (2013) 41 J Law, Med & Ethics 781. 109 Janet E Lord and Rebecca Brown, ‘The Role of Reasonable Accommodation in Securing Substantive Equality for Persons with Disabilities: The UN Convention on the Rights of Persons with Disabilities’ in Marcia H Rioux, Lee Ann Basser, and Melinda Jones (eds), Critical Perspectives on Human Rights and Disability Law (Leiden: Boston 2011) 273. 110 111 CO Ethiopia (n 76) para 58. World Disability Report (n 5) 74. 106 107
bickenbach and skempes
754
Habilitation and Rehabilitation
of the right to privacy. The CRPD Committee has clearly identified such requirements in its examination of state party reports of Armenia,112 Uganda,113 and Denmark.114 Thirdly, the Committee on various occasions has, in the context of the obligation under article 31 to collect ‘appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention’,115 emphasized that an important component of this information is data about the availability of rehabilitation services for persons with disabilities, offered publically or through private companies.116 The Committee has stated that to ensure adequate monitoring of the implementation of articles 25 and 26, states parties should aim for a unified data-collection system including appropriate and clear indicators for health and rehabilitation services and programmes.117 To ensure their legitimacy and integrity, metrics and indicators should draw upon the obligations of signatory states under article 31, whereby information collected about persons with disabilities shall be ‘used to help assess the implementation of states parties’ obligations under the present Convention’. This information needs to be developed and applied in close collaboration with rehabilitation service users, including persons with disabilities,118 as well as experts through rigorous scientific methods that account for the complexity of rehabilitation services organization.119 To secure a realistic and comprehensive assessment of progress in the implementation of article 26, monitoring indicators should address issues of governance and strategic planning, workforce development and distribution, and, most importantly, access to financial coverage and quality of rehabilitation services and must be incorporated in existing data infrastructures to increase the likelihood of being regularly used and reported.120 The Committee’s interpretation of the impact of the implementation of article 26, in short, comports with the consensus among UN agencies on the need for a systems approach to comprehensive rehabilitation services, not only for the human rights agenda as represented by the CRPD, but also in respect of the development agenda represented CO Armenia (n 77) para 38. CRPD Committee, ‘Concluding Observations on the Initial Report of Uganda’ UN Doc CRPD/C/ UGA/CO/1 (12 May 2016) para 45. 114 CRPD Committee, ‘Concluding Observations on the Initial Report of Denmark’ UN Doc CRPD/C/ DNK/CO/1 (30 October 2014) para 51. 115 Art 31 CRPD para 1. 116 CRPD Committee, ‘Concluding Observations on the Initial Report of Ecuador’ UN Doc CRPD/C/ ECU/CO/1 (27 October 2014) para 51; CRPD Committee, ‘Concluding Observations on the Initial Report of Germany’ UN Doc CRPD/C/DEU/CO/1 (13 May 2015) para 58; CRPD Committee ‘Concluding Observations on the Initial Report of Cyprus’ UN Doc CRPD/C/CYP/CO/1 (8 May 2017) para 62 (CO Cyprus); CRPD Committee, ‘Concluding Observations on the Initial Report of Mauritius’ UN Doc CRPD/ C/MUS/CO/1 (30 September 2015) para 35 (CO Mauritius); CO China (n 85) para 84; CO Colombia (n 81) para 59; CO Slovakia (n 76) para 72. 117 CO Cyprus (n 116) para 62. 118 In the case of Colombia, the CRPD Committee recommended that the State ‘Monitor, in consultation with organizations of persons with disabilities, the habilitation and rehabilitation services offered by private companies’, see CO Colombia (n 80) para 59. Similarly the Committee urged Slovakia ‘to guarantee, in consultation with organizations of persons with disabilities, the quality and availability of all rehabilitation services and the introduction of mechanisms to monitor compliance with the Convention’. CO Slovakia (75) para 72. 119 Dimitrios Skempes and Jerome Bickenbach, ‘Developing Human Rights-based Indicators to Support Country Monitoring of Rehabilitation Services and Programmes for People with Disabilities: a Study Protocol’ (2015) 15 BMC Int Health Hum Rights 25. 120 Dimitrios Skempes and Jerome Bickenbach, ‘Developing a Human Rights based Indicator Framework to Assess Country Efforts to Strengthen Rehabilitation in Health Systems: A Concept Mapping Study’ in Leaving No One Behind? Reflection for Action in a Changing World, 23rd Canadian Conference on Global Health, 29–31 October 2017 (Canadian Society for International Health 2017) 76. 112 113
bickenbach and skempes
Article 26
755
by the Sustainable Development Goals. The future implementation of article 26 and the promise of full and equal access to high quality, affordable and effective, comprehensive rehabilitation services and programmes, including the provision and maintenance of assistive devices and technologies, depends on a holistic, integrative, and systemic approach. The quality of services, the development and training of a rehabilitation workforce, the strengthening of information systems, AT development and procurement, support and service financing, as well as governance are all equally important. It is not sufficient to react in an ad hoc fashion to specific gaps in the availability and accessibility of rehabilitation services and programmes for persons with disabilities—although, on the road to progressive realization, filling these service gaps is an important step. Ultimately, however, the implementation of article 26 requires a more comprehensive, systems-oriented strategy at the national level.
4.2 ‘particularly in the areas of health, employment, education and social services’ The chapeau’s explicit reference to ‘health, employment, education and social services’ as areas of rehabilitation under the heading of ‘comprehensive’ rehabilitation, requires us to return to the point already raised. On the one hand, by reaffirming this list of services121 the CRPD Committee has emphasized the importance of making available a wide range of services and supports to persons with disabilities. The Committee has also implicitly reinforced an interpretation of article 26 as pointing to rehabilitation services and supports the aims of which are to enhance independence, community- living, educational and vocational participation. However, ‘health’ rehabilitation is also mentioned here, which requires clarification. The Committee is clear, as noted above, that the human rights approach to disability rejects the assumption that disability is primarily a health issue, amenable only to medical interventions that focus on the impairments experienced by persons with disabilities,122 while ignoring their assets and strengths,123 on the one hand, and the disabling effects of the environment on the other. This is a key message of the CRPD itself and provides us with principles of interpretation. That said, the issue of how to distinguish the scope of rehabilitation services, supports, and programmes comprised within article 25 from those in article 26 is not thereby resolved. What limited commentary there is on this question is confused by the conflation of the terms ‘health’ and ‘medical’.124 In a recent commentary on article 26, for example, it was claimed that rehabilitation has three dimensions: medical, social, and
121 CRPD Committee, ‘Concluding Observations on the Initial Report of United Arab Emirates’, UN Doc CRPD/C/ARE/CO/1 (3 October 2016) para 45; CO Qatar (n 78) para 48. 122 CO Qatar (n 78) para 47 (‘the Committee is concerned that policies on habilitation and rehabilitation overemphasize health-related issues’); CO Colombia (n 80) para 58 (‘The Committee is also concerned that rehabilitation measures focus on physical or deficiency-related aspects of persons with disabilities, and don’t take into consideration such areas as education and employment.’). 123 CO Armenia (n 77) para 45 (noting with concern the fact that ‘more than half of children with disabilities do not benefit from an individual rehabilitation plan’). 124 Michael Ashley Stein, Janet E Lord, and Dorothy Weiss Tolchin, ‘Equal Access to Health Care Under the UN Disability Rights Convention’ in Rosamond Rhodes, Margaret P Battin, and Anita Silvers (eds), Medicine and Social Justice: Essays on the Distribution of Health Care (Oxford University Press 2012) 245.
bickenbach and skempes
756
Habilitation and Rehabilitation
vocational, and that medical rehabilitation ‘focuses on restoring the health and functional abilities of people after severe diseases or injury.’125 By contrast, vocational rehabilitation enhances employability and social rehabilitation, as well as strengthens social and economic capacities to ensure independence and participation. The author goes on to imply that medical rehabilitation is what is meant by the reference to ‘health-related rehabilitation’ in article 25 CRPD, whereas article 26 comprises the other two dimensions. Health-related rehabilitation, the author claims, would include, for example, ‘physical therapy to strengthen muscles’.126 It is perhaps not determinative that physical therapists as a professional group would reject a description of their services as ‘medical’, but it is far more troubling that under any description of a vocational rehabilitation programme, physical rehabilitation is an essential operational component.127 It is relevant here to remark that the first case to come before the CRPD Committee under article 2(e) of the Optional Protocol to the CRPD considered, inter alia, the application of articles 25 and 26 CPRD. In H M v Sweden128 the complainant argued that because of chronic connective tissue disorder and complications including hypersensitivity to medications, she could no longer leave her house and the only rehabilitation therapy she could benefit from was hydrotherapy, which required her to construct a hydrotherapy pool for rehabilitation in her home. The authorities had refused building permission and, after exhausting domestic remedies, H M filed the complaint to the Committee on the ground that she was denied the right to rehabilitation. Although on the facts the service involved was clearly health-related rehabilitation and so limited to article 25, the Committee did not hesitate to join the two articles. It went on to conclude that: ‘the author’s rights under articles 5(1), 5(3), 25 and the state party’s obligations under article 26 of the Convention, read alone and in conjunction with articles 3 (b), (d), and (e), and 4(1) (d) of the Convention, have been violated’.129 The Committee adopted precisely the same tactic in the later case of X v Argentina.130
5. Paragraph 1(a) With respect to the three core human rights attributes of rehabilitation services mentioned in this paragraph—‘at the earliest possible stage’(timeliness) and ‘based on the multidisciplinary assessment of individual needs and strengths’ (coordination and patient centeredness)—the Committee has repeatedly and consistently reaffirmed their importance as key quality aspects of the provision of these services.131 Empirical evidence 125 Ilja R Pavone, ‘Article 26 [Habilitation and rehabilitation]’ in Valentina della Fina, Rachele Cera, Giussepe Parmissiano (eds), The United Nations Convention on the Rights of Persons with Disabilities: A Commentary (Springer 2017) 486. 126 ibid 489. 127 See generally Reuben Escorpizo, Sören Brage, Debra Homa, and Gerold Stucki (eds), Handbook for Vocational Rehabilitation and Disability Evaluation (Springer 2015). 128 CRPD Committee, Communication No 3/2011 UN Doc CRPD/C/7/D/3/2011 (21 May 2012). 129 ibid para 9. 130 Committee on the Rights of Persons with Disabilities, Communication No 8/2012 UN Doc CRPD/C/ 11/D/8/2012 (18 June 2014). 131 CO Ukraine (n 73) para 49; CO Armenia (n 77) para 46; CO Thailand (n 78) para 53; CO Mauritius (n 116) para 36; CRPD Committee, ‘Concluding Observations on the Initial Report of Croatia’ UN Doc CRPD/C/HRV/CO/1 (15 May 2015) para 40.
bickenbach and skempes
Article 26
757
shows that delays in access to rehabilitation can adversely affect functioning outcomes132 and possibly result in secondary complications. Conversely, timely access to rehabilitation, especially when provided in an organized setting, is crucial for slowing the progression of impairment and protecting the relatively lower ‘margin of health’ of people with disabilities.133 It should be recognized that these and other features of the provision of rehabilitation services constitute standard quality characteristics that are professionally well-recognized and in many jurisdictions have regulatory status.134 Internationally, the WHO has recently reaffirmed in its official documents, including action plans, these and other features of quality service provision.135
6. Paragraph 1(b) This paragraph highlights the CRPD principles of autonomy and accessibility stipulating that rehabilitation supports and services be voluntary and provided as close as possible to the communities in which the person with disabilities lives. The importance of the voluntariness of rehabilitation services has been a recurring theme in the disability studies’ critique of health and rehabilitation professions, and historically is aligned with the social model’s rejection of the ‘sick role’ that feeds into social marginalization.136 It has been empirically shown, moreover, that there is a profound lack of concordance between what persons with disabilities and rehabilitation professionals identify as treatment priorities and unmet rehabilitation needs.137 The requirement that rehabilitation services be voluntary, furthermore, underscores the need to respect the dignity and the physical and mental integrity of every person with disabilities, as articulated in articles 3 and 17 CRPD. Broadly, this means that each person with disabilities has the opportunity to make treatment choices autonomously. The principle
132 Joseph Tepas et al, ‘The Effect of Delay In Rehabilitation on Outcome of Severe Traumatic Brain Injury’ (2009) 44 J Pediatr Surg 368; Kurt R Herzer et al, ‘Association Between Time to Rehabilitation and Outcomes After Traumatic Spinal Cord Injury’ (2016) 97 Arch Phys Med Rehabil 1620. 133 WHO Rehabilitation in Health Systems (n 100) 18. 134 See eg Australian Council on Healthcare Standards, ‘Rehabilitation Medicine—Version 6 Clinical Indicator User Manual’, available at: . Also, in Canada a government-led accreditation agency (Accreditation Canada) develops programmes to assess conformance with standards developed by the Health Standards Organization in Rehabilitation Services (HSO 11010:2015) and Population with Chronic Conditions (HSO 60002:2015) among others, available at: . 135 Disability, Including Prevention, Management and Rehabilitation: Report by the Secretariat, World Health Assembly resolution A58 23 (25 May 2005) para 1(5); Disability—Report by the Secretariat, World Health Assembly resolution A66/12 (11 March 2013) para 25; Disability—Draft WHO global disability action plan 2014–2021: Better health for all people with disabilities—Report by the Secretariat, World Health Assembly resolution A67/16 (4 April 2014); World Health Organization, ‘Rehabilitation: Key for Health in the 21st century’ WHO Doc WHO/NMH/NVI/17 3, available at: . 136 Deborah Stone, The Disabled State (MacMillan 1984); Wolf Wolfensberger, ‘Human Service Policies: The Rhetoric versus the Reality’ in L Barton (ed), Disability and Dependency (Falmer: Lewes 1989) 23; Albrecht (n 2). 137 Paula Kersten et al, ‘Disabled People and Professionals Differ in their Perceptions of Rehabilitation Needs’ (2000) 22 J Pub Health 393; Marie-Helene Raymond, Louise Demers, and Debbie Ehrmann Feldman ‘Differences in Waiting List Prioritization Preferences of Occupational Therapists, Elderly People, and Persons With Disabilities: A Discrete Choice Experiment’ (2017) Arch Phys Med, available at: .
bickenbach and skempes
758
Habilitation and Rehabilitation
of autonomy, expressed through free and informed decision-making, is a central theme in client-based rehabilitation138 and of course is a general principle underlying the CRPD.139 The Reporting Guidelines have operationalized this requirement by linking it to user participation, requiring that states parties report on measures and procedures adopted to ‘ensure that programmes are of a voluntary character and designed in close collaboration with organizations representing persons with disabilities’.140 For its part, the Committee has only had occasion in its LOI and concluding observations to mention voluntariness in the case of China,141 Mongolia,142 and Australia143 and in each case has operationalized voluntariness in terms of explicit procedures for eliciting free and informed consent, thus bringing article 26 directly in line with the Committee’s similar, but more commonly mentioned, position with respect to health care in article 25.144 In order to make an informed decision about their preference with respect to rehabilitation supports and services, full information and counselling support should be made available by rehabilitation providers for all people in accordance with the requirements of article 9 CRPD, which concerns accessibility. With respect to the proximity of rehabilitation services to persons with disabilities, the Committee has impress upon states parties that accessibility is very much a matter of proximity of access to these services. People with disabilities living outside major cities or in rural or remote areas may simply be unable, because of poverty, mobility limitations or the absence of accessible public transportation to take advantage of those services.145 Most commonly, this human rights imperative is expressed in terms of the need for good quality, affordable and accessible rehabilitation services, supports, and programmes, based in the communities in which the person with disabilities lives. The CRPD Reporting Guidelines speak of rehabilitation services and programmes ‘provided as close as possible to the community, including in rural areas’. A reasonable indicator of this goal should consider the ‘number and percentage of local-based habilitation and rehabilitation options availed within the local community to persons with disabilities’.146 This suggests that the Committee is interested in the geographical distribution of these services so as to secure equitable access wherever a person with disability may live.
138 Geraldine Boyle ‘Autonomy in Long-term Care: A Need, A Right or A Luxury?’ (2008) 23 Dis & Soc 299; Carolyn Ells, Matthew R Hunt, and Jane Chambers-Evans, ‘Relational Autonomy as an Essential Component of Patient-centered Care’ (2011) 4 Intern J Feminist Approaches to Bioethics 79; M Cardol, BA De Jong, and CD Ward, ‘On Autonomy and Participation in Rehabilitation’ (2002) 24 Disabil Rehabil 970. 139 140 Art 3 CRPD. CRPD Monitoring Guidelines (n 70) para 168. 141 CO China (n 85) para 40. 142 CRPD Committee, ‘Concluding Observations on the Initial Report of Mongolia’ UN Doc CRPD/C/ MNG/CO/1 (13 May 2015) para 40 [CO Mongolia]. 143 CRPD Committee, ‘Concluding Observations on the Initial Report of Australia’ UN Doc CRPD/C/ MUS/CO/1 (21 October 2015) para 48. 144 CRPD Committee, ‘Concluding Observations on the Initial Report of Jordan’ UN Doc CRPD/C/JOR/ CO/1 (15 May 2017) para 48; CRPD Committee, ‘Concluding Observations on the Initial Report of Mexico’ UN Doc CRPD/C/MEX/CO/1 (27 October 2014) para 50; CO China (n 85) para 38; CO Colombia (n 81) paras 56, 57; CO Ethiopia (n 76) para 54; CO Bolivia (74) para 57; CO Italy (n 72) para 62. 145 CO Mongolia (n 142) paras 38, 39; CO Qatar (n 78) para 48; CO Thailand (n 78) para 5; CO Armenia (n 77) para 48; CO Ethiopia (n 76) para 57; CO Italy (n 72) para 55. 146 CRPD Reporting Guidelines (n 70) para 169.
bickenbach and skempes
Article 26
759
In various concluding observations, however, there is an unfortunate slippage between supporting the requirement of geographical equity and the recommendation to provide or scale-up Community Based Rehabilitation (CBR).147 For example, the Committee, concerned about the centralization of rehabilitation services, recommended to Costa Rica that it ‘adopt a strategy to promote community-based rehabilitation services focused on developing the capacities of persons with disabilities from an early age’.148 CBR, however, entails far more than the delivery of rehabilitation services in communities close to where people with disabilities live; it is an extensive strategy for disability-inclusive community development which, at least since the early 1970’s, has focused on all areas of community life and only incidentally facilitated access of persons with disabilities to rehabilitation services.149 Although, initially in the late 1960’s, CBR focused on the provision of basic rehabilitation services in low-resource settings whereby very few, if any, health or rehabilitation services were available, over the decades it has evolved in the direction of a development and community mobilization strategy for persons with disabilities.150 This point was made clear in 2004 with a joint WHO, UNESCO, and ILO position paper, which read as follows:151 CBR is a strategy within general community development for the rehabilitation, equalization of opportunities and social inclusion of all people with disabilities. CBR is implemented through the combined efforts of people with disabilities themselves, their families, organizations and communities, and the relevant governmental and non-governmental health, education, vocational, social and other services.152
Given the extremely wide scope of CBR and the fact that the CBR strategy centres on the mobilization and political organization of persons with disabilities within their community, it would be problematic if the distinction between CBR and the provision of rehabilitation services in the community collapsed. Rehabilitation professionals have expertise in providing rehabilitation services, but not necessary the expertise to further a disability-inclusive development strategy at the community level. The importance of not conflating the provision of rehabilitation in the community (to ensure accessibility) and CBR was in fact warned against by the delegates of International Disability Caucus and Rehabilitation International at the sixth session of the Ad Hoc Committee’s hearings. The IDC, while strongly recommending that CBR be explicitly mentioned in the Convention, made the point that in practice the CBR workers in low-and medium- resource countries may have no training in rehabilitation.153 People with disabilities in 147 CRPD Committee ‘Concluding Observations on the Initial Report of Costa Rica’ UN Doc CRPD/C/ CRI/CO/1 (12 May 2015) para 54 [CO Costa Rica]; CO Bolivia (n 74) para 60; CO Dominican Republic (n 77) para 48. 148 CO Costa Rica (n 147) para 54. 149 See WHO, Swedish Organizations of Disabled Persons International Aid Association, Community Based Rehabilitation as We Have Experienced It: Voices of Persons with Disabilities Part 1 (2002) 10, available at: . 150 Helen Jackson, ‘Approaches to Rehabilitation of People with Disabilities: A Review’ (1998) 3 Journal of Social Development in Africa 39, available at: . 151 International Labour Organization, United Nations Educational, Scientific and Cultural Organization, and the World Health Organization, CBR: A Strategy for Rehabilitation, Equalization of Opportunities, Poverty Reduction and Social Inclusion of People with Disabilities: Joint Position Paper (WHO 2004), available at: . 152 153 ibid 6. Ad Hoc Committee (n 35).
bickenbach and skempes
760
Habilitation and Rehabilitation
these countries primarily rely on CBR as a force for community organization towards a far broader agenda of disability-inclusive development. In the event, although the CRPD makes several references to the importance of various services, including rehabilitation services, to be provided in the community, it does not make reference to CBR at all. It is likely that when the CRPD Committee explicitly mentions CBR in one of its concluding observations, it will do so in the form of a recommendation explicitly about CBR. It would be preferable not to assume that the mention of CBR in the context of article 26 is the Committee’s interpretation of paragraph 1(b)’s requirement that rehabilitation services be made available to persons with disabilities as close as possible to their own communities. The provision of rehabilitation services in the community is one thing, but CBR is far more than that.
7. Paragraph 2 Although the plain reading of this paragraph appears to require states parties to develop ‘initial and continuing training’ for professionals in rehabilitation services, on the basis of the comments made during the Ad Hoc Committee sessions from delegates, the thrust of this paragraph entails that rehabilitation professionals and staff should be trained in the nature of disability and human rights. Although the CRPD Committee has not as yet brought this paragraph up in its LOIs or concluding observations, the 2016 Reporting Guidelines clearly make this point by requiring states parties to report on ‘measures adopted to ensure that the human rights-based approach to disability is incorporated into training curricular and guidelines for professionals and staff working in habilitation and rehabilitation programmes for persons with disabilities’.154 This interpretation can be further supported by the various remarks made by the Committee in the context of article 25 about the need for ‘training courses and ethical standards on the rights of persons with disabilities for medical professionals’,155 or the need to ‘conduct training to ensure that health-care practitioners are aware of the rights of persons with disabilities under the Convention and have the tools to provide appropriate advice for persons with disabilities, including women with disabilities’,156 or again ‘training for health personnel in order to effectively realize the right to health of persons with disabilities’.157 Building awareness of and ensuring commitment to human rights by all professionals and staff providing services to persons with disabilities is a general state obligation under article 4 CRPD and is crucial for creating inclusive and sustainable societies.158 The need for training in the nature of disability and human rights for both health and rehabilitation professionals has also been well recognized in the literature.159 155 CRPD Reporting Guidelines (n 70) para 170. CO Armenia (n 77) para 44. CRPD Committee, ‘Concluding Observations on the Initial Report of Canada’ UN Doc CRPD/C/ CAN/CO/1 (8 May 2017) para 46. 157 CRPD Committee, ‘Concluding Observations on the Initial Report of Argentina’ UN Doc CRPD/C/ ARG/CO/1 (8 October 2012) para 40. 158 Art 4 CRPD para i. 159 Tom Shakespeare, Liza I Iezzoni, and Nora E Groce, ‘Disability and the Training of Health Professionals’ (2009) 374 Lancet 1815; Liza I Iezzoni and Linda M Long-Bellil, ‘Training Physicians About Caring for Persons with Disabilities: “Nothing About Us Without Us!” ’ (2012) 5 Disabil Health J 136; Physicians for Human Rights, ‘The Right to Health and Health Workforce Planning: A Guide for Government Officials, NGOs, Health Workers and Development Partners’ (2008) 61, available at: . 154 156
bickenbach and skempes
Article 26
761
In the rehabilitation sector in particular, professionals are advised to use human rights, especially the right to health, as a way to contextualize clinical care and to ensure that interventions are administered and provided in an ethical and responsive manner— thereby improving patient satisfaction.160 By embracing the normative elements of the CRPD as underpinning the organization and delivery of rehabilitation supports and services, rehabilitation professionals and their representative organizations can become advocates for rehabilitation policies that are rights-based and ensure that the rehabilitation sector is given proper attention and allocated sufficient resources in disability and social policy agendas.
8. Paragraph 3 This paragraph deals with assistive devices and technologies and mandates states parties to promote their availability, knowledge, and use. Although the wording of this paragraph appears to restrict the universe of applicable devices and technologies to those ‘designed for persons with disabilities’, most experts and advocates for AT argue, in light of the philosophy of universal design, that the AT universe should include any product that can provide assistance to a person with disabilities, whether designed specifically for persons with mobility, sensory, physical, or cognitive impairments, or a mainstream product universally marketed that can, in use, be of assistance to persons with disabilities.161 Article 4 CRPD sets out the general obligation of states parties to ‘undertake or promote research and development of universally designed goods, services, equipment and facilities’, which should require the minimum possible adaptation and the least cost to meet the specific needs of a person with disabilities, to promote their availability and use, and to promote universal design in the development of standards and guidelines.162 Given this endorsement it would be consistent with the CRPD to give ‘assistive devices and technologies’ this broad interpretation. Although the Committee has taken the opportunity to add specific questions about assistive technology to its LOIs to states parties—focusing on the cost of AT and the provision of repair and maintenance services—the issue has been taken up in only a single concluding observation. In the Committee’s concluding observation to the Cook Islands it recommended that the Ministry of Health’s Rehabilitation Group ‘provide free at point of source all rehabilitation equipment, assistive devices, mobility aids (including their repair) and establish an array of rehabilitation services across the country’.163 Given the importance of assistive devices and technologies to the lives of many people with disabilities, this lack of interpretative guidance is unfortunate. Although the Committee has twice commented on the need to promote the use and availability of AT 160 Marca Bristo et al, ‘The Convention on the Rights of Persons With Disabilities: What Is at Stake for Physiatrists and the Patients We Serve’ (2014) 6 PM&R 356. 161 See the definition suggested by the WHO Global Cooperation on Assistive Technology (GATE): ‘Any external product (including devices, equipment, instruments or software), especially produced or generally available, the primary purpose of which is to maintain or improve an individual’s functioning and independence, and thereby promote their well-being.’ Available at: . 162 Art 4 CRPD para 1(f ). 163 CRPD Committee, ‘Concluding Observations on the Initial Report of Cook Islands’ UN Doc CRPD/ C/COK/CO/1 (17 April 2015) para 48.
bickenbach and skempes
762
Habilitation and Rehabilitation
in the context of article 9 CRPD on accessibility,164 no reference to AT is made in the extensive General Comment on article 9 released in 2014.165 Since the provision, fitting and maintenance of assistive devices and technologies consist of services that are typically included within rehabilitation services and programmes in most countries, article 26 is the most appropriate location for this human rights guarantee. Many developed countries have laws and regulations governing the delivery and funding of AT for people with disabilities. In Australia, for example, the National Disability Insurance Agency’s strategy on AT was released in 2015 and describes an action framework to support and stimulate a vibrant and innovative supply-side AT market by providing a conduit for innovation and promoting the up-take of technology solutions as well as stimulating informed, participant-led demand by empowering participants to choose AT that best supports their needs.166 Nordic countries also have extensive legal provisions that promote the development of the AT ecosystem and ensure access to a comprehensive range of environmental supports and technologies.167 In contrast, AT policy frameworks in low and middle income countries are missing, service delivery regulations are under-developed and funding mechanisms are inadequate.168 For this reason, the CRPD Committee may need to return to the issue of AT in order to provide states parties with clearer recommendations regarding the introduction and planning of AT in alignment with the CRPD. Consideration should also be given to the thematic study on access to support by persons with disabilities by the UN Special Rapporteur on Disability that includes guidance for states on how to ensure the provision of different forms of rights-based support and assistance for persons with disabilities, in consultation with them.169
8.1 Women, Children, Older Persons, and Migrants with Disabilities As a general matter, all health and social supports and services must, in line with articles 6 and 7 CRPD, be provided in a manner that is gender and age-sensitive and attentive to cultural variations.170 Article 25 specifically requires states to ensure that health services, including health-related rehabilitation services, are gender-sensitive and this requirement can be read into article 26 as well. In many parts of the world, gender inequalities perpetuated by political and social structures result in women with disabilities being denied equal opportunities to access appropriate rehabilitation. Evidence from the rehabilitation literature reveals that despite women having higher disability and rehabilitation related
CO Mauritius (n 116) para18; CO Uganda (n 76) para 17. CRPD Committee, ‘General Comment No 2 (2014) Article 9: Accessibility’ UN Doc CRPD/C/GC/ 2 (22 May 2014). 166 National Disability Insurance Scheme, ‘Assistive Technology Strategy’ (National Disability Insurance Agency 2015), available at: . 167 See Nordic Centre for Rehabilitation Technology, ‘Provision of Assistive Technology in the Nordic Countries’ (Nordic Cooperation on Disability Issues, 2007), available at: . 168 Martin Gould et al, ‘Convention on the Rights of Persons with Disabilities, Assistive Technology and Information and Communication Technology Requirements: Where Do We Stand on Implementation?’ (2015) 10 Disabil Rehabil Assist Technol 295; Rebecca Matter et al, ‘Assistive Technology in Resource-limited Environments: A Scoping Review’ (2017) 12 Disabil Rehabil Assist Technol 105. 169 Human Rights Council, ‘Report of the Special Rapporteur on the Rights of Persons with Disabilities’ UN Doc A/HRC/34/58 (20 December 2016). 170 CESCR Committee, ‘General Comment No 14: The Right to the Highest Attainable Standard of Health (Art 12 of the Covenant)’ UN Doc E/C 12/2000/4 (11 August 2000) para 12(c). 164 165
bickenbach and skempes
Article 26
763
needs,171 they are at higher risk of institutionalization,172 less likely to receive care that is appropriate to their needs and social circumstances and less likely to attend comprehensive and individualized specialist rehabilitation programmes.173 Fragmentation of service systems, lack of coordination between agencies and providers and lack of information and counselling are only few of the reported barriers women with disabilities experience in accessing individualized rehabilitative health services in high income countries.174 In the case of children, the Committee has remarked that rehabilitation services should include training for parents of children with disabilities, especially those with serious conditions such as autism.175 The Committee has not explicitly commented on the provision of rehabilitation services for older persons with disabilities, although it has on several occasions done so with respect to health services for this population.176 Finally, on several occasions, with respect to both health and rehabilitation services, the Committee has expressed concern for migrants with disabilities and the obligation of states parties to ensure that their service requirements are met.177
171 Kirsten Naumman Murtagh and Helen B Hubert, ‘Gender Differences in Physical Disability Among an Elderly Cohort’ (2004) 94 Am J Public Health 1406. 172 Rodica E Petrea et al, ‘Gender Differences in Stroke Incidence and Post Stroke Disability in the Framingham Heart Study’ (2009) 40 Stroke 1032. 173 Anne Hammarström et al, ‘Low-Educated Women with Chronic Pain Were Less Often Selected to Multidisciplinary Rehabilitation Programs’ (2014) 9 PLoSOne e97134, available at: ; Raziyeh Maasoumi et al, ‘Development of a Sexual Needs Rehabilitation Framework in Women Post-Spinal Cord Injury: A Study From Iran’ (2017) Arch Phys Med Rehabil, available at: . 174 Barbara E Gibson and Roxanne Mykitiuk, ‘Health Care Access And Support For Disabled Women In Canada: Falling Short of the UN Convention on the Rights of Persons with Disabilities: A Qualitative Study’ (2012) 22 Women’s Health Issues 111; Maria Wiklund et al, ‘Access to Rehabilitation: Patient Perceptions of Inequalities in Access to Specialty Pain Rehabilitation from a Gender and Intersectional Perspective’ (2016) 9 Global Health Action, available at: . 175 CO Bolivia (n 74) para 60; CO Mauritius (n 116) para 36. 176 CO Colombia (n 81) para 57. 177 CRPD Committee, ‘Concluding Observations on the Initial Report of Honduras’ UN Doc CRPD/C/ HND/CO/1 (4 May 2017) para 56; CO Qatar (n 78) para 45; CO Dominican Republic (n 77) para 49; CO El Salvador (n 79) para 54; CO United Arab Emirates (n 121) para 45.
bickenbach and skempes
Article 27 Work and Employment . States Parties recognize the right of per1 sons with disabilities to work, on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities. States Parties shall safeguard and promote the realization of the right to work, including for those who acquire a disability during the course of employment, by taking appropriate steps, including through legislation, to, inter alia: (a) Prohibit discrimination on the basis of disability with regard to all matters concerning all forms of employment, including conditions of recruitment, hiring and employment, continuance of employment, career advancement and safe and healthy working conditions; (b) Protect the rights of persons with disabilities, on an equal basis with others, to just and favourable conditions of work, including equal opportunities and equal remuneration for work of equal value, safe and healthy working conditions, including protection from harassment, and the redress of grievances; (c) Ensure that persons with disabilities are able to exercise their labour and trade union rights on an equal basis with others; (d) Enable persons with disabilities to have effective access to general technical and
1. Introduction 2. Background 3. Travaux Préparatoires 4. Paragraph 1: Chapeau 4.1 Sub-paragraph 1(a) 4.2 Sub-paragraph 1(b)
vocational guidance programmes, placement services and vocational and continuing training; (e) Promote employment opportunities and career advancement for persons with disabilities in the labour market, as well as assistance in finding, obtaining, maintaining and returning to employment; (f ) Promote opportunities for self- employment, entrepreneurship, the development of cooperatives and starting one’s own business; (g) Employ persons with disabilities in the public sector; (h) Promote the employment of persons with disabilities in the private sector through appropriate policies and measures, which may include affirmative action programmes, incentives and other measures; (i) Ensure that reasonable accommodation is provided to persons with disabilities in the workplace; (j) Promote the acquisition by persons with disabilities of work experience in the open labour market; (k) Promote vocational and professional rehabilitation, job retention and return- to- work programmes for persons with disabilities. . States Parties shall ensure that persons with 2 disabilities are not held in slavery or in servitude, and are protected, on an equal basis with others, from forced or compulsory labour.
4.2.1 Equal Remuneration for Work of Equal Value
bantekas, pennilas, and trömel
765 766 768 771 773 777 777
Article 27
765
Sub-paragraph 1(c) Sub-paragraph 1(d) Sub-paragraph 1(e)
779 780 780 781 782 783 784 785
4.6 Sub-paragraph 1(f ) 4.7 Sub-paragraph 1(g) 4.8 Sub-paragraph 1(h) 4.9 Sub-paragraph 1(i) 4.10 Sub-paragraph 1(j) 4.11 Sub-paragraph 1(k) 5. Paragraph 2
787 788 789 790 793 798 798 799
4.3 4.4 4.5
4.2.2 4.2.3 4.2.4 4.2.5 4.2.6
Safe and Healthy Working Conditions Equal Opportunity to Be Promoted Rest, Leisure, Working Hours, and Holidays Protection from Harassment Remedies and Redress of Grievances
4.5.1 The State Obligation to Counter Exclusion by Promoting Employment
1. Introduction Article 27 of the Convention on the Rights of Persons with Disabilities (CRPD) devoted to the right to work and employment is one of the rights in the CRPD that most clearly reflects the interrelated nature of the various rights covered by the CRPD.1 The right to work and employment is affected by the effective enjoyment of other rights like education, legal capacity, personal mobility, and access to information, but is also clearly interrelated with enabling elements such as accessibility, in particular transport and the physical environment, as well as awareness raising. This interrelatedness2 is also reflected in the fact that a number of CRPD articles make specific references to employment. Paragraph 2(a)(iii) of article 8 on awareness raising was first drafted as part of the article on the right to work.3 Article 24 on education not only refers to lifelong learning, but also to the employment of teachers with disabilities. Article 26 includes employment as one of the areas that should be covered by habilitation and rehabilitation. Article 27 is also a provision where the three elements of what states should do to promote human rights (respect, protect, and fulfil) are all relevant and mutually complementary. Unlike other articles, the ‘respect’ dimension in article 27 CRPD is probably the least relevant in the context of employment and applies mainly in the context of protection
1 The opinions of the co-authors, Mr Stefan Trömel and Mr Facundo Chavez Penillas, presented in this publication are their own and do not necessarily represent the positions of the International Labour Organization or the Office of the United Nations High Commissioner for Human Rights. See generally Jody Heymann, Michael Ashley Stein, and Gonzalo Moreno (eds), Disability and Equity at Work (OUP 2014); Maria Vendegodt-Liisberg, Disability and Employment (Intersentia 2011); Valentina della Fina, Rachelle Cera (eds), Protecting the Rights of People with Autism in the Fields of Education and Employment: International, European and National Perspectives (Springer 2015). 2 OHCHR, ‘Annual Report: Thematic Study on the Work and Employment of Persons with Disabilities’ UN Doc A/HRC/22/25 (17 December 2012) para 54. 3 Ad Hoc Committee, ‘Draft Article 22: Right to Work’, available at: .
bantekas, pennilas, and trömel
766
Work and Employment
from discrimination in employment in the public sector and in those services that are provided by public authorities, such as public employment services and vocational training. Much more relevant is therefore the obligation to ‘protect’ as it relates to the employment of persons with disabilities by, in particular, the private sector. The wording related to the provision of reasonable accommodation is a reflection of this, as it is not an obligation of the state to provide reasonable accommodation (unless it relates to public employment) in the workplace, but of the employer, which may turn out to be a private entity. Having said this, it is the responsibility of the state to create the conditions for reasonable accommodations to be provided. The employment of persons with disabilities requires, moreover, the programmatic element reflected in the obligation to ‘fulfil’. In fact, much of the content of article 27 falls into this last category of obligations as it relates to the different public policies that states should have in place to promote the right to work of persons with disabilities. Some of the jurisprudence of the Committee on the Rights of Persons with Disabilities (CRPD Committee) reflects the challenge to enforce some of these policy provisions from an individual point of view. Another element that is reflected in the wording of the article is the significant difference between countries where the majority of the population is part of the formal economy versus countries where the vast majority of the population, both persons with disabilities and others, works in the informal economy. The adoption of the 2030 Agenda for Sustainable Development4 has brought to the attention the need to connect the CRPD with the relevant goals and targets of the 2030 Agenda. This is reflected in many references by the CRPD Committee to target 8.5 of the 2030 Agenda, which refers to inclusive economies and decent work for all, explicitly referring to persons with disabilities. There continues to be a challenge to have internationally comparable statistics on the employment of persons with disabilities. Notwithstanding, where these statistics are available, they show that the unemployment rates of persons with disabilities are higher than those of persons without impairments.5 In OECD countries in particular, the largest difference is not in the unemployment rate but in the employment-to-population rate in persons of working age, showing that a very significant proportion of persons with disabilities is inactive, not even registered as seeking employment.
2. Background Just like other rights and freedoms in the CRPD, article 27 is not a new addition to the international human rights armoury. The right to work, which is made up of several inter-related rights, is considered a fundamental human right, chiefly because it ensures the individual’s sustenance, dignity (including self-worth) and wellbeing.6 It was early 4 UNGA Res 70/1 (21 October 2015), ‘Transforming our world: the 2030 Agenda for Sustainable Development’, particularly Goals 4 a, 10.2 and 17.18. 5 See OECD, ‘Sickness, Disability and Work: Breaking the Barriers’ (OECD 2010) 1, which states that by 2000 ‘nearly half of the people with disabilities were economically inactive. Among those that were economically active, 14 per cent were unemployed, which is double the unemployment rate for people without disabilities.’ 6 See Virginia Mantouvalou (ed), The Right to Work: Legal and Philosophical Perspectives (Hart 2017); Philip Harvey, Securing the Right to Employment: Social Welfare Policy and the Unemployed in the United States (Princeton University Press 2014).
bantekas, pennilas, and trömel
Article 27
767
recognized in article 23(1) of the Universal Declaration on Human Rights (UDHR), which stresses that everyone has the right to work, free choice of employment, just and favourable conditions of work, and protection against unemployment. It was subsequently inserted in article 6 ICESCR. Article 7 ICESCR enshrines the individual right to the enjoyment of just and favourable conditions of work, in particular the right to safe working conditions, whereas article 8 codifies its collective dimension by setting out the right to form and participate in trade unions. The right to work is further guaranteed in article 8(3)(a) ICCPR; article 5(e)(i) ICERD; article 11(1)(a) CEDAW; article 32 CRC; and articles 11, 25, 26, 40, 52, and 54 of the International Convention on the Protection of the Rights of All Migrant Workers and Members of their Families. The right to work is further protected in regional instruments, particularly, article 1 of the revised European Social Charter of 1996; article 15 of the African Charter on Human and Peoples’ Rights and; article 6 of the Additional Protocol to the American Convention on Human Rights in the Area of Economic, Social and Cultural Rights. The right to work is of course further elaborated in the many conventions of the ILO, albeit few of these include a reference to persons with disabilities. The aforementioned instruments apply to persons with disabilities and are complemented by a growing body of regional instruments and case law that target specifically persons with disabilities. Some of these are specific to the right to work, others are general disability rights instruments covering also the right to work. Some preceded the CRPD and had a certain influence on it, while others were adopted later and have been impacted by the CRPD. The ILO initially set out vocational rehabilitation standards in the 1950s,7 culminating in the ILO Convention on the vocational rehabilitation and employment of disabled persons (Convention 159) in 1983. Among the corpus of regional instruments one should include the Inter-American Convention on Elimination of Discrimination on the Ground of Disability (article III(1)), and the Protocol to the African Charter on Human and Peoples Rights on the Rights of Persons with Disabilities in Africa, whose article 15 was inspired by article 27 CRPD. Of equal importance is Council Directive 2000/78/EC establishing a general framework for equal treatment in employment and occupation.8 Recital 17 sets out the limits of reasonable accommodation, whereas recital 20 refers to appropriate workplace arrangements for workers with disabilities, including adaptation of premises and equipment, work patterns, distribution of tasks, and staff training. Recital 21 determines when the burden of reasonable accommodation is unreasonable financially for the employer, as specified in article 5(3) of the Directive.9 From the perspective of earlier standard-setting soft law instruments, the UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities10 stands out. Rule 7 therein made explicit reference to the right of employment for persons with disabilities. Our analysis of the issues covered in article 27 CRPD will introduce further legal developments, ILO, Vocational Rehabilitation (Disabled) Recommendation (No 99) (22 June 1955). Council Directive 2000/78/EC of 27 November 2000 establishing a general framework for equal treatment in employment and occupation, OJ L 303 (2 December 2000) 16. 9 Significantly, the Directive has been construed by the CJEU as protecting the rights of carers of persons with disabilities; see Coleman v Attridge Law, Case C-303/06, [2008] ECR I-5603; see also Lisa Waddington, Aart Hendricks, ‘The Expanding Concept of Employment Discrimination in Europe: From Direct and Indirect Discrimination to Reasonable Accommodation Discrimination’ (2002) 18 International Journal of Comparative Labour Law and Industrial Relations 403. 10 UNGA Res 48/96 (20 December 1993), Annex. 7 8
bantekas, pennilas, and trömel
768
Work and Employment
whether in the form of case law, soft law, or international treaties. To avoid duplication, these are not referred to in this background section.
3. Travaux Préparatoires Article 27 was not a controversial article of the CRPD during its negotiation in the Ad Hoc Committee on a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities (Ad Hoc Committee). It was first introduced with a very brief three-line proposal presented to the working group that met in January 2004,11 which produced a much more detailed article (article 22 by the sixth meeting of the Ad Hoc Committee) which already included many of the elements of the final article, although the actual wording of most provisions significantly changed. During the first and second session, several government delegations and NGOs presented a variety of draft treaties or specific articles, many of which related to the right of persons with disabilities to employment.12 The draft article as it resulted from the 2004 working group meeting was not negotiated in the fourth and fifth session of the Ad Hoc Committee, but benefited from thorough discussions in the sixth13 and seventh14 sessions and some final adjustments at the eighth session. More than fifty government delegations submitted proposals and intervened during the different discussions on this article, as well as many civil society organizations and the International Labour Organization (ILO), the UN agency whose mandate of work includes work and employment. The analysis of the travaux préparatoires provides a useful background to understand the reasoning behind many of the provisions of the article. We will focus on a few key elements of these discussions. One of the surprising elements of the negotiation of this article is that the arguably strongest component of article 27, the prohibition to discriminate, reflected in paragraph 1(a), was only added to the draft article15 at the seventh session of the Ad Hoc Committee, drawing from proposals from the article facilitators,16 Canada,17 Israel,18 and the IDC.19 11 Ad Hoc Committee, ‘Chair’s Draft Elements of a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (December 2003), available at: . 12 See eg draft Art 14 of the Mexican ‘Working Paper’ UN Doc A/AC 265/WP 1 (2002). 13 Ad Hoc Committee, ‘Daily Summary of Discussion at the Sixth Session’ (10 August 2005), available at: . 14 Ad Hoc Committee, ‘Daily Summary of Discussion at the Seventh Session’ (25 January 2006), available at: ; see also, Ad Hoc Committee, ‘Daily Summary of the Seventh Session’ (26 January 2006), available at: . 15 Ad Hoc Committee, seventh session ‘Working Text’, available at: . 16 Ad Hoc Committee, sixth session ‘Text of the Facilitator’, available at: . 17 Ad Hoc Committee, seventh session, ‘Contributions by Governments: Canada’, available at: . 18 Ad Hoc Committee, sixth session, ‘Contributions by Governments; Israel’, available at: ; see also Israel Position Paper at the Seventh Session (n 24). 19 See Ad Hoc Committee, sixth session, ‘IDC, Comments on Draft Article 22’, available at: ; see also ‘Experiential Intervention by Daniel Iga Mwesigwa from the World Network of Users and Survivors of Psychiatry—WNUSP on behalf of the International Disability Caucus— IDC’, available at: .
bantekas, pennilas, and trömel
Article 27
769
While the concept of reasonable accommodation appears in the text of other rights of the CRPD, it generated a certain level of debate (and some confusion) during the discussions on the right to work.20 This is not surprising, as in many national legislations it is in the context of the right to employment that the concept of reasonable accommodation first appears.21 While the prohibition to discriminate on the basis of disability reflected in paragraph 1(a) covers the denial to provide reasonable accommodation (as explained in article 5), it was considered relevant to reaffirm this explicitly in paragraph 1(h) of article 27. One of the most heated debates in the negotiation of this article related to the inclusion or not of references to sheltered employment, which were usually referred to as alternative forms of employment. The draft prepared by the article facilitator and presented to the sixth Ad Hoc Committee session included a specific paragraph devoted to alternative forms of employment,22 following proposals from the ILO,23 Israel,24 and others.25 This explicit reference was opposed by many other governments and civil society organizations which, while aware of the existence in many countries of this form of employment, did not want to see the CRPD endorsing it, as reflected in the Chair’s summary of the discussions at the sixth and seventh Ad Hoc Committee sessions26 and in the Chairman’s report on article 27 presented at the end of the sixth session of the Ad Hoc Committee.27 A third position was held by those arguing that even if the CRPD should not endorse this form of employment, persons with disabilities that are currently working on such a basis should have their rights protected. This was presented by an IDC representative in the discussion during the seventh Ad Hoc Committee session28 and was also part of the Israeli contribution to the seventh session of the Ad Hoc Committee.29 This position prevailed and led to the reference to ‘all forms of employment’ in paragraph 1(b) of the article. Another issue that received a certain level of attention was whether or not to include a specific reference to employment in the public sector. Some governments and civil society organizations (CSO) argued that the state had a special responsibility and should set a good example.30 Others opposed an explicit reference to the public sector, claiming that all provisions of the article apply to all employers, whether public, private, or non-profit. 20 See Daily Summary of Discussion at the sixth session (10 August 2005) (n 13); equally, Daily Summary of Discussion at the seventh session (26 January 2006) (n 14). 21 Americans with Disabilities Act, 42 USC §§ 12101–17, 12201–13 (1994) (codified as amended); Equality Act 2010 (England and Wales) c 15; Council Directive 2000/78/EC of 27 November 2000 (n 8). 22 Ad Hoc Committee, sixth session, ‘Consolidation of Proposals submitted by the Facilitator’ (11 August 2005), available at: . 23 ILO, ‘Draft Technical Note on Article 27’, available at: ; see also ILO’ ‘Comments on Draft Article 22: Right to Work’, available at: . 24 Ad Hoc Committee, ‘Israel Position Paper for the Seventh Ad Hoc Committee’ (12 January 2006), available at: . 25 Ad Hoc Committee, ‘Report of the Third Session’, UN Doc A/AC 265/2004/5 (9 June 2004). 26 See Note by the Secretary-General, ‘Report of the Ad Hoc Committee on its Sixth Session’ UN Doc A/ 60/266 (17 August 2005) para 96; see also ‘Daily Summary of Discussion at the Sixth Session’; equally, ‘Daily Summary of Discussion at the Seventh Session’ (26 January 2006) (n 14). 27 Ad Hoc Committee, sixth session, ‘Report by the Chairman’, available at: . 28 ‘Daily Summary of Discussion at the Sixth Session’; equally, ‘Daily Summary of Discussion at the Seventh Session’ (26 January 2006) (n 14). 29 Israel Position Paper (n 24). 30 Daily Summary of Discussions (26 January 2006) (n 14); see also Daily Summary of Discussions (10 August 2005) (n 13).
bantekas, pennilas, and trömel
770
Work and Employment
Paragraph 1(i) reflects the compromise between these two positions with a very succinct reference to employment in the public sector. In parallel, a discussion ensued on how best to promote employment in the private sector. The discussion reflected the different modalities used by states to promote the employment of persons with disabilities in the private sector, ranging from quota legislation, which often foresees a levy for non-compliance, the use of financial incentives and/ or tax rebates and the use of public procurement. An explicit reference to quotas was not accepted, as many states, as well as organizations of persons with disabilities (OPD), did not support this type of measure.31 Notwithstanding this outcome, quotas are deemed compatible with the CRPD and are considered under the ambit of ‘specific measures’ in article 5 and as ‘affirmative action’ in article 27(1)(h). Of significance during this debate was the consideration that the CRPD should make it clear that affirmative action programmes should not be considered as giving rise to discrimination.32 This concern, which came up particularly in the context of the right to work, is adequately addressed in paragraph 4 of article 5, which states that specific measures that are needed to accelerate or achieve de facto equality of persons with disabilities will not be considered discriminatory. The strong link between the right to work and other rights often generated the debate as to where certain provisions should best be included. One example of this is paragraph 2(a)(iii) of article 8, which relates to awareness raising as regards the skills of persons with disabilities and the specific contribution they make to the labour market. Another example of this was the suggestion to include a reference to assistive devices, which obviously play a key role in allowing many persons with disabilities to be able to work, but are also relevant in other contexts and therefore better placed in article 26 on habilitation and rehabilitation. While a few delegations suggested a reference to the employment of family members of persons with disabilities,33 this was not accepted. However, the protection from discrimination on the basis of disability under paragraph 1(a) covers situations where family members are discriminated because of their association with a person with disability. A proposal to include a specific reference to women with disabilities was presented by Sudan during the seventh session of the Ad Hoc Committee.34 This followed from some initial proposals presented by Uganda, Morocco, Vietnam, and Jordan during the third Ad Hoc Committee session, including the proposal to replace the reference to ‘persons’ in the chapeau of the article with ‘women and men’.35 Unfortunately, no specific reference to women with disabilities was kept in this article. The seventh session of the Ad Hoc Committee included the important addition of what was to become the short, but important, paragraph 2 of article 27, prohibiting persons with disabilities to be held in slavery and servitude and protecting them from forced or compulsory labour. This proposal was made by IDC and supported by Kenya and the ILO. The wording was largely inspired by article 9 of the ICCPR. 32 ibid, both daily summaries. ibid, Daily Summary (26 January 2006). Ad Hoc Committee, third session, ‘Compilation of Proposed Revisions and Amendments made by the Members of the Ad Hoc Committee to the Draft Text Presented by the Working Group as a basis for Negotiations by Member States and Observers in the Ad Hoc Committee’, available at: . 34 Ad Hoc Committee, ‘Comments Proposals and Amendments Submitted Electronically: Sudan’, available at: . 35 Compilation of proposed revisions (n 33). 31 33
bantekas, pennilas, and trömel
Article 27
771
The term ‘on an equal basis with others’ is often used in the CRPD and highlights that when there are limitations to the exercise of certain rights by the whole population, people with disabilities are also affected by this. An example of this is illustrated by paragraph 1(c). Indeed, one of the last changes made to the article related to paragraph 1(c), replacing the words ‘in accordance with national laws of general application’ by the more standard clause ‘on an equal basis with others’,36 reiterating the idea that where trade union rights are restricted to all workers, they would also be restricted to workers with disabilities. The issue of child labour came up when some delegations suggested the addition of the words ‘in working age’ to ‘persons with disabilities’ in the chapeau of the article. Others, however, argued that work could prove useful for children, obviously reflecting a larger debate on child labour.37 Finally, it was decided to use the term ‘persons with disabilities’ in the title without any qualifier. The wording ‘right to the opportunity to gain a living by work freely chosen or accepted’ is already to be found in the text which resulted from the working group meeting in 201438 and reflected in article 27(1) of the CRPD. It is based on article 6 ICESCR) and seeks to reflect the somehow ‘limited’ capacity of states to provide an absolute guarantee to work to all their citizens.
4. Paragraph 1: Chapeau The wording of the chapeau is strongly inspired by article 6 ICESCR. As with many other rights recognized in the CRPD, the right to work is recognized on an equal basis with others, which is indeed, not an absolute right to work but the right to the opportunity to gain a living through work.39 This wording recognizes that states, while having an obligation ‘to take steps’ to the maximum of their available resources to achieve progressively the full realization of the right to work, cannot provide an absolute guarantee that employment will be available to all persons. Furthermore, the article insists that the concept of work refers to work freely chosen or accepted by the person. This wording seems to address situations where people with specific types of impairments are strongly encouraged to take up jobs that have been prejudicially considered appropriate for persons with a specific type of impairment. The CRPD Committee in its Concluding Observations to China addressed this concern in the context of blind people being directed to choose massage as their profession.40 This wording is also linked to the protection from forced or compulsory labour, a concept further elaborated in the second paragraph of the article. The chapeau refers also to a work environment that is open, inclusive and accessible to persons with disabilities. While not leading to an explicit prohibition of alternative Daily Summary of Discussion (26 January 2006) (n 14). Ad Hoc Committee, third session, ‘Daily Summary of Discussions related to Article 22: Right to Work’ vol 4 No 7 (2 June 2004), available at: . 38 Ad Hoc Committee, ‘Draft Article 22: Right to Work’, available at: . 39 CESCR, ‘General Comment No 18 on the Right to Work’ UN Doc E/C 12/GC/186 (6 February 2006) para 6. 40 CRPD Committee, ‘Concluding Observations on the Initial Report of China’ UN Doc CRPD/C/CHN/ CO/1 (15 October 2012) paras 41–42. 36 37
bantekas, pennilas, and trömel
772
Work and Employment
forms of employment, such as sheltered employment,41 this wording indicates the type of employment that is considered in line with the principles of the CRPD. This reference in the chapeau provides a good basis for states to promote accessibility in the workplace, an element otherwise not explicitly mentioned in this article. The 2012 thematic study on the work and employment of persons with disabilities of the Office of the United Nations High Commissioner for Human Rights (OHCHR) includes a section on accessible workplaces which provides some examples of countries that have promoted accessible workplaces through legislation and policies, which is useful in this context.42 The term ‘open labour market’ is often used in the disability context, referring to the participation of people with disabilities in the general labour market and not in ‘closed’ sheltered employment. This reaffirms the position of the drafters of the CRPD that alternative forms of employment should no longer be promoted.43 As the decision was taken not to refer to alternative forms of employment in this article, no guidance is given on what states should do with these forms of employment. Some useful guidance can however be found in the 2012 OHCHR study.44 The reference to ‘persons who acquire a disability in the course of employment’ is a reminder that many persons acquire impairments while they are already engaged in the labour market. The relevant measures addressing the situation of this group are further developed in paragraph 1(k). The final words of the chapeau indicate that states will need to implement a variety of steps, including legislation but also public policies, in order to achieve the fulfilment of the right to work for persons with disabilities on an equal basis with others. Neither the chapeau nor the remainder of article 27 make any reference to social security and pension, although it is mentioned in article 28(2)(e) CRPD. As this is an integral part of the right to work, it is guaranteed to all those in employment and those who pay social security contributions, or on whose behalf such contributions are paid by the state or others.45 The Inter-American Court of Human Rights ordered Peru, in respect of unfairly dismissed workers with disabilities—although it should be stated that no attempt was made to provide the means for their return to the active labour force—to: grant those workers that cannot be reinstated to their jobs by reason of their physical or mental disability, the disability pension available to them according to law, in addition to the corresponding compensations for damages.46
This judgment should not be read as requiring employers to grant a pension or similar benefits to workers with disabilities in substitution of the provision of support, accessibility or reasonable accommodation to return to work. It may equally be argued that the right to social security and pension is encompassed under article 27(1)(a) and (b) CRPD as these are meant to cover all elements of the right to work, which includes the right to social security and pensions. 41 Sheltered employment takes many forms. The common characteristic is that sheltered companies or workshops are composed of a majority of persons with disabilities, usually considered as having particular difficulties in finding employment in the regular labour market. 42 OHCHR Thematic Study (n 2) paras 25–28, (reporting that according to the submissions to the report, most countries have taken action on accessibility, including by building ramps, accessible toilets, elevators, and others; Andorra and Egypt, informing on measures on accessibility of transportation to facilitate access to the workplace; Paraguay indicating that sign language interpretation is provided for interviews; Germany and Mexico, stating that accessibility must be guaranteed in companies over a number of employees). 43 44 See (nn 25–30). OHCHR Thematic Study (n 2) paras 15 and 16. 45 See contra, but on narrow grounds, Khrapunskiy v Doar, 12 N Y 3d 478 (2009). 46 Acevedo-Jaramillo v Peru, Judgment (IACtHR 7 February 2006) paras 292, 300.
bantekas, pennilas, and trömel
Article 27
773
4.1 Sub-paragraph 1(a) Given that employment is one among several economic, social, and cultural rights, it follows that states parties to the CRPD must take appropriate measures to fulfill this right to the maximum of their available resources.47 Nevertheless, states parties have immediate obligations when it comes to the implementation of non-discrimination, including in the context of work and employment, and they should be able to immediately prove that they are ‘taking steps’ towards the realization of the right.48 The bulk of article 27 clearly also requires a significant degree of affirmative action albeit its precise scope will be analyzed in the context of each subsection. There are, of course, several grey areas in respect of where the boundary of positive discrimination should lie.49 The immediate obligation against non-discrimination requires from states parties to have legislation in place (disability-specific and/or mainstream) that prohibits discrimination on the basis of disability in all matters and forms of employment. Equally important, this provision requires states parties to immediately modify and repeal laws, policies and practices that are discriminatory against persons with disabilities in the field of employment. Pertinent legislation should prevent any intentional or unintentional discrimination based on disability. One of the possible areas of discrimination relates to medical tests applied only upon persons with disabilities. There is, for instance, legislation in some countries obliging employers to require candidates with disabilities to undergo medical clearance to ensure that the job offered does not impact on their health condition. Another element often encountered in practice is that persons with psychosocial disabilities, particularly when their condition is known by the employer, are considered as being dangerous to themselves or others and thus are refused employment. A Belgian Labour Tribunal held that an employer could not directly distinguish an employee based on an alleged disability in order to respond to the needs and preferences of colleagues and/ or customers, as this distinction could not be considered as a genuine and determining occupational requirement.50 Given that discrimination entails different treatment, it is now well established in some jurisprudence in Europe, that persons with disabilities are not required to disclose their impairment to their employer.51 These are clearly discriminatory practices as they apply only to persons with disabilities.52
47 Art 4(2) CRPD; CESCR, ‘General Comment No 3: The Nature of States Parties’ Obligations (Art 2, para 1, of the Covenant) UN Doc E/1991/23 (1991) paras 10–13. 48 OHCHR, ‘Report on Equality and Non-Discrimination under Article 5 of the Convention on the Rights of Persons with Disabilities’ UN Doc A/HRC/34/26 (9 December 2016) para 5; General Comment No 3, ibid para 2. 49 In Trevethick v Ministry of Health [2008] NZHC 415, a person with multiple sclerosis argued that if her disability had been caused by accident rather than illness, she would have received significantly greater disability benefits from the government under accident compensation legislation. The New Zealand High Court stated that although it agreed in principle with the applicant, it could not arbitrarily alter the comparator and interfere with the process of law-making. The relevance here is that discrimination in policies may not necessarily amount to unlawful discrimination in all spheres of employment. 50 Judgments No 12/2552/A and No 12/2596/A, Labour Tribunal of Bruges judgment (10 December 2013). 51 See French Court of Cassation judgment, Cour Cass Social No 1083 (6 May 2003) (2003) 8–9 RJS 733. Cited in European Network of Legal Experts in the Non-Discrimination Field, ‘Report on Measures to Combat Discrimination: Directives 2000/43/EC and 2000/78/EC, France Country Report’ (2010) 117. 52 See generally Spencer Keen, Disability Discrimination in Employment (OUP 2009); Ellen Berrey, Robert L Nelson, Laura B Nielsen (eds), Rights on Trial: How Work-Based Discrimination Law Perpetuates Inequality (University of Chicago Press 2017).
bantekas, pennilas, and trömel
774
Work and Employment
Another field of application of anti-discrimination concerns persons with HIV or similar virus-based infectious diseases. Persons with HIV/AIDS should not be dismissed or otherwise cast aside in the workplace by reason of their condition, where it is found that they can still perform their ordinary functions or perform other tasks through reasonable accommodation.53 Several domestic54 and international tribunals55 have held that where an HIV/AIDS-infected person is able to continue working any interference with his or her employment, particularly where the ground for dismissal or other action against the person relates exclusively to his or her medical condition, is discriminatory and thus prohibited. The CRPD Committee has indeed identified in its concluding observations a number of discriminatory laws and policies.56 It has considered, for instance, that policies requiring certifications establishing if persons with disabilities are ‘fit for employment’ are discriminatory, as is also the case with restricting access to the performance of specific professions on grounds of disability.57 The Committee approached in equal manner the concepts of ‘working capacity’ or ‘unemployable’, recommending the elimination of such concepts from existing legislation.58 The requirement of ‘medical fitness’ has also been considered as discriminatory by the Committee.59 The rationale behind the issue of ‘incapacity’ to work is that it has been considered a remnant of the medical approach to disability, superseded by the human rights-based approach, hence, its discriminatory character.60 The Committee has also challenged legislation that conditions the capacity of women with disabilities to work on the basis of male guardian consent.61 The CRPD Committee has linked the implementation of ‘incapacity’ criteria to access to employment in the open labour market as a way of promoting sheltered and segregated employment.62 It has been clearly identified that such criteria are used in order to exclude persons with disabilities from the open market, for example, when applied to restrict access to minimum labour rights such as minimum wage.63 Limitations on accessing minimum wage or restrictions on the basis of disability to the number of hours 53 See ILO Recommendation concerning HIV and AIDS and the World of Work, 2010 (No 200); see also Parliamentary Assembly of the Council of Europe (PACE) Recommendation 1116 (1989) on AIDS and human rights. 54 Hoffman v South African Airways [2000] ZACC 17; M v R, Swiss Federal Court judgment (2000) ATF 127 III 86; Canada (Attorney General) v Thwaites [1994] 3 F C 38; X v Commonwealth [1999] HCA 63. 55 IB v Greece [2013] ECHR 283. 56 CRPD Committee, ‘Concluding Observations on the Initial Report of Italy’ UN Doc CRPD/C/ITA/ CO/1 (6 October 2016) paras 69–70. 57 CRPD Committee, ‘Concluding Observations on the Initial Report of Gabon’ UN Doc CRPD/C/GAB/ CO/1 (2 October 2015) para 58. 58 CRPD Committee, ‘Concluding Observations on Lithuania’ UN Doc CRPD/C/LTU/CO/1 (10 May 2016) paras 51–52; see also CRPD Committee, ‘Concluding Observations on Turkmenistan’ UN Doc CRPD/ C/TKM/CO/1 (13 May 2015) paras 45–46. 59 CRPD Committee, ‘Concluding Observations on Jordan’ UN Doc CRPD/C/JOR/CO/1 (15 May 2017) paras 49–50. 60 CRPD Committee, ‘Concluding Observations on Serbia’ UN Doc CRPD/C/SRB/CO/1 (23 May 2016) paras 53–54. 61 CRPD Committee, ‘Concluding Observations on United Arab Emirates’ UN Doc CRPD/C/ARE/CO/ 1 (2 October 2016) paras 49–50; see also CRPD Committee, ‘Concluding Observations on Qatar’ UN Doc CRPD/C/QAT/CO/1 (2 October 2015) paras 49–50. 62 CRPD Committee, ‘Concluding Observations on Mauritius’ UN Doc CRPD/C/ MUS/ CO/ 1 (30 September 2015) paras 37–38. 63 CRPD Committee, ‘Concluding Observations on Republic of Korea’ UN Doc CRPD/C/KOR/CO/1 (28 October 2014) paras 49–50.
bantekas, pennilas, and trömel
Article 27
775
that a person with disability can work, constitute structural limits to exercising the right to work and employment on an equal basis with others. As a result, they are discriminatory in nature.64 Discriminatory policies can operate as disincentives. The Committee claims that disincentives should be analysed and reformed in order to improve employment rates among persons with disabilities.65 It has considered that the restriction on the number of hours that a person with disability can work may in fact operate to discourage them to look for employment.66 It has also identified that employers may be discouraged to hire persons with disabilities when security of employment is granted on the basis of disability.67 The CRPD Committee, among others, have addressed sheltered employment in a number of their recommendations.68 While some recommendations have focused on the disappearance of this form of employment, others have focused on the need for such forms of employment to promote transition of their employees to the regular labour market. As already mentioned in the travaux préparatoires section of this chapter, states and civil society shared different views on how the CRPD should address this situation.69 While an actual ban on sheltered employment was not included, the aforementioned concluding observations indicate that the CRPD Committee has considered that sheltered employment does not comply with the general principles of the CRPD or with the objectives set out in the chapeau of article 27.70 Closing down sheltered workshops can be difficult in many countries in the short term but states should consider, however, limiting the entry of new employees in these workshops and allocate resources to support inclusive employment of persons with disabilities who require more support to be in the open labour market.71 The explicit prohibition of discrimination on the basis of disability needs to be included not only in legislation specific to persons with disabilities, where this might exist, but also in general labour laws and codes. While this could be considered redundant from a legal point of view, it is a fact that employers, trade unions, as well as labour market institutions are likely to be more familiarized with general labour laws and not with legislation specific to persons with disabilities.72 64 CRPD Committee, ‘Concluding Observations on Mongolia’ UN Doc CRPD/C/MNG/CO/1 (13 May 2015) para 41. 65 CRPD Committee, ‘Concluding Observations on Croatia’ UN Doc CRPD/C/HRV/CO/1 (15 May 2015) para 42. 66 ibid. 67 CRPD Committee, ‘Concluding Observations on Bolivia’ UN Doc CRPD/C/BOL/CO/1 (4 November 2016) paras 61–62. 68 CRPD Committee, ‘Concluding Observations on Serbia’ (n 60) paras 55–56; CRPD Committee, ‘Concluding Observations on Slovakia’ UN Doc CRPD/C/SVK/CO/1 (17 May 2016) paras 73–74; CRPD Committee, ‘Concluding Observations on Germany’ UN Doc CRPD/C/DEU/CO/1 (13 May 2015) paras 49–50; CRPD ‘Concluding Observations on Mauritius’ UN Doc CRPD/C/MUS/CO/1 (30 September 2015) paras 37–38; CRPD Committee, ‘Concluding Observations on Bosnia and Herzegovina’ UN Doc CRPD/C/BIH/CO/1 (2 May 2017) paras 47–48; CRPD Committee, ‘Concluding Observations on Canada, UN Doc CRPD/C/CAN/CO/1 (8 May 2017) paras 47–48. 69 See (nn 25–30). 70 CRPD Committee, ‘Concluding Observations on Luxemburg’, UN Doc CRPD/C/LUX/CO/1 (10 October 2017) paras 46–47; CRPD Committee, ‘Concluding Observations on Bosnia and Herzegovina’ UN Doc CRPD/C/BIH/CO/1 (2 May 2017) para 48. 71 Lane et al v Brown et al, United States District Court Case No 3:12-cv-00138-ST (regarding settlement agreement), available at: (accessed 2 December 2017). 72 CRPD Committee, ‘Concluding Observations on the Initial Report of Armenia’ UN Doc CRPD/C/ ARM/CO/1 (8 May 2017) para 48; CRPD Committee, ‘Concluding Observations on the Initial Report of
bantekas, pennilas, and trömel
776
Work and Employment
The 2012 OHCHR thematic study provides a useful, albeit not exhaustive, list of aspects of employment which should be covered by non-discrimination legislation, namely: (i) recruitment processes, such as advertising, interviewing, and other selection processes, (ii) review of hiring standards to remove indirect discrimination that places persons with disabilities at a disadvantage; (iii) recruitment decisions; (iv) terms and conditions of employment, such as remuneration rates, work hours and leave; (v) promotion, transfer, training, or other benefits associated with employment, or dismissal or any other detriment, such as demotion or retrenchment; (vi) benefits related to the (non- discriminatory) termination of employment; (vii) victimization and harassment; (viii) safe and healthy working conditions.73 States should ensure that labour inspections include discrimination on the basis of disability as part of their interaction with employers, not only from the point of view of sanctioning for non-compliance, but also in terms of providing assistance on how employers can implement the pertinent legislation, including with respect to the provision of reasonable accommodation. Legislation should protect persons with disabilities from discriminatory dismissal on the basis of disability, in particular in situations where people acquire an impairment while at work.74 In these situations, there should be an obligation, including as a form of reasonable accommodation, on the employer to retain the worker and offer them the necessary support to keep their position and, where with the necessary support the employer cannot subsequently undertake the core aspects of his or her previous work, alternative work should be offered.75 The Americans with Disabilities Act specifically refers to reassigning persons with disabilities to a vacant position as one form of avoiding discrimination.76 The ILO Guide on Reasonable Adjustments in the Workplace also includes reassignment to a different job as one form of accommodation.77 Legislators should, however, be careful in providing an absolute protection against the dismissal of persons with disabilities, for example through establishing a very burdensome procedure to allow for the dismissal of a person with disability, as this could lead to disincentives for initial recruitment. Enabling environments for all are also good for persons with disabilities. Flexible work measures (like teleworking, part time work, flexible time table for entering and leaving work, breakout areas, etc) might be relevant for many persons with disabilities, as well as for other employees. It is, however, important not to present these general measures as specific for persons with disabilities, as this could give the impression that persons with disabilities cannot work full-time or travel to their workplaces. These and other Moldova’ UN Doc CRPD/C/MDA/CO/1 (18 May 2017) para 49, regarding mainstreaming in general labour law and policy the rights of persons with disabilities. OHCHR Thematic Study (n 2) 7–8. ‘Managing Disability in the Workplace: ILO Code of Practice’, available at: www.ilo.org/skills/pubs/ WCMS_103324/lang--en/index.htm. 75 In Archibald v Fife Council, [2004] UKHL 32, a female road sweeper had a condition that made walking impossible. Although her state employer re-trained her for an office job, she was made to reapply for local authority jobs but was unsuccessful because her qualifications were always slightly of a lower standard. She was subsequently dismissed. The House of Lords held that it was open to an employer to ameliorate a disabled employee’s disadvantage by transferring the employee upwards, as well as sideways or downwards, or to transfer the employee without placing them through a competitive recruitment process. 76 See Guidelines of the US Equal Employment Opportunity Commission (EEOC), available at: . 77 See ILO, Promoting Diversity and Inclusion through Workplace Adjustments: A Practical Guide (ILO 2016) 47. 73 74
bantekas, pennilas, and trömel
Article 27
777
adjustments can be provided on an individual basis to persons with disabilities as reasonable accommodation.78 Discrimination on the basis of disability should include protection not just of people with disabilities but also people who are perceived as such, for example, for people who have a history of mental health conditions. Furthermore, the issue of genetic discrimination linked to an increased likeliness of developing certain impairments or health conditions is a particular risk in the area of employment. Legislation preventing discrimination on the basis of disability should cover this by preventing employers from having access to the genetic information of their current and prospective employees.79
4.2 Sub-paragraph 1(b) Similar to article 7 ICESCR, paragraph 1(b) CRPD refers to just and favourable conditions of work and provides a non-exhaustive but less detailed list of these conditions. Additional guidance on what is to be covered under the term working conditions is provided by the very recent General Comment No 23 of the Committee on Economic, Social and Cultural Rights (CESCR),80 which includes a specific section on persons with disabilities. We shall, therefore, address in this section not only the conditions of work explicitly addressed in paragraph 1(b), but also other conditions of work mentioned in article 7 ICESCR, benefiting from the guidance provided by General Comment No 23.
4.2.1 Equal Remuneration for Work of Equal Value The concept of equal remuneration for work of equal value was first included in international treaties in the ILO Equal Remuneration Convention, 1951 (C100), which states in its article 2 that: Each Member shall, by means appropriate to the methods in operation for determining rates of remuneration, promote and, in so far as is consistent with such methods, ensure the application to all workers of the principle of equal remuneration for men and women workers for work of equal value.
Article 7 ICESCR broadens the scope by covering also grounds other than sex, stating in particular that: The states parties to the present Covenant recognize the right of everyone to the enjoyment of just and favourable conditions of work which ensure, in particular: (a) remuneration which provides all workers, as a minimum, with: (i) fair wages and equal remuneration for work of equal value without distinction of any kind, in particular women being guaranteed conditions of work not inferior to those enjoyed by men, with equal pay for equal work.
78 See Robert D Wilton, ‘From Flexibility to Accommodation? Disabled People and the Reinvention of Paid Work’ (2004) 29 Transactions of the Institute of British Geographers 420; Georgetown University Law Centre, ‘Workers with Disabilities: The Role of Workplace Flexibility’ (2010), available at: . 79 Aisling De Paor and Charles O’Mahony, ‘The Need to Protect Employees with Genetic Predisposition to Mental Illness? The UN Convention on the Rights of Persons with Disabilities and the Case for Regulation’ (2016) 45 Ind Law J 525. 80 CESCR, ‘General Comment No 23 (2016) on the Right to Just and Favourable Conditions of Work’ (article 7 ICCPR) UN Doc E/C 12/GC/23 (27 April 2016); but see also CESCR, ‘General Comment No 5 (Persons with disabilities) UN Doc E/1995/22 (9 December 1994) para 20, where it was stressed that: . . . The integration of persons with disabilities into the regular labour market should be actively supported by states’.
bantekas, pennilas, and trömel
778
Work and Employment
Applying the concept of equal remuneration for work of equal value is not a straight forward issue. General Comment No 23 of the CESCR provides some guidance on this in the context of equal remuneration for women and men. For instance, it is not only about receiving equal remuneration when they perform the same or similar jobs, but also the remuneration should be equal when the work is completely different but nonetheless of equal value when assessed by objective criteria.81 Having said this, it seems that it would be inconsistent with the CRPD to allow for legislation that establishes disability as a ground for non-respect of national minimum wages, where these exist. Nevertheless, there are indeed a number of countries that allow exceptions based on disability to the national minimum wage regulation as reflected also in the 2014 ILO General Survey on minimum wage systems.82 The reasoning behind these exceptions is usually based on the prejudice suffered by persons with disabilities, or at least some persons with disabilities, being considered as having a lower level of working capacity than others and that if this ‘perceived’ lower level of working capacity cannot be compensated by employers by being able to pay less as compared to persons without impairments doing a similar job, the result will be that persons with disabilities will not be employed. This issue has been addressed by the CRPD Committee in its dialogue with New Zealand, which led to the recommendation: ‘that the state party examine alternatives to minimum wage exemption permits in the employment of persons with disabilities’.83 There are also impairment-based assessment processes84 used in some countries which seek to determine the productivity of people with disabilities compared to persons without impairments. The result of these assessments would then lead to the establishment of the wage to be paid by the employer. In some states, if the person with disability who has been assessed as having a lower productivity is paid a full wage, the state would provide a wage subsidy to the employer covering the difference between the full wage and the wage the person should have received if the productivity element would have been considered. The CRPD Committee has voiced its negative view of the assessment tool that is used in the context of the Australian Supported Wage System. The recommendation, however, was to revise it and not to abolish it.85 General Comment No 23 of the CESCR, in its section devoted to workers with disabilities, states that a person with disability ‘must not suffer wage discrimination due to a perceived reduced capacity of work’.86 It is indeed discriminatory that these wage assessment processes are only applied to persons with disabilities, as if all people without impairments have the same level of productivity.
81 CESCR, General Comment 23 (n 80) paras 11–17; see also Lisa Waddington, ‘Equal to the Task? Re-examining EU Equality Law in Light of the United Nations Convention on the Rights of Persons with Disabilities’ (2012) European YB Disability Law 169. 82 General Survey of the reports on the Minimum Wage Fixing Convention 1970 (No 131), and the Minimum Wage Fixing Recommendation 1970 (No 135) (ILO 7 February 2014). 83 CRPD Committee, ‘Concluding Observations on New Zealand’ UN Doc CRPD/C/NZL/CO/1 (31 October 2014) paras 57–58. 84 See American Medical Association, Guide to the Evaluation of Permanent Impairment (5th edn, AMA 2000). 85 CRPD Committee, ‘Concluding Observations on Australia’ UN Doc CRPD/C/AUS/CO/1 (21 October 2013) paras 49–50. 86 See (n 80).
bantekas, pennilas, and trömel
Article 27
779
4.2.2 Safe and Healthy Working Conditions Health and safety is one of the most often mentioned concerns among employers related to the employment of persons with disabilities, including, as mentioned before, situations where persons with psychosocial disabilities are often considered a risk for themselves or others. While there are certain circumstances where this concern is real, very often it is not based on a real assessment of the situation and, when there is an issue, this can often be solved by providing the relevant reasonable accommodation. In any case, one way to limit this concern, is by ensuring that employers, when designing their health and safety policies, assume a universal design approach that considers as many hazards and risks as possible aiming at covering the largest possible population. Participation is key to this purpose and employers should include in the design and implementation processes persons with disabilities, or people currently experiencing temporary functional limitations, in order to learn from their experience and better identify their requirements.87 Diversity of impairments may require specific adjustments in health and safety policies and practices. Applying a universal design approach complemented with the provision of reasonable accommodation, when needed in a particular case, can provide for both general and specific measures.88 Health and safety concerns under article 27 CRPD do not encompass the implementation of general health and safety measures which are well covered by general provisions of general law and pertinent ILO conventions. What domestic laws should ensure is that work-related health and safety issues are inclusive of persons with disabilities. Moreover, the CRPD covers situations of persons who acquire an impairment at work or elsewhere. If the impairment was the result of a failure to abide by health and safety laws the employer could incur liability in tort, in addition to other penalties, such as administrative fines or criminal liability of managerial personnel, depending on local legislative provisions. In a case decided by the Argentine Supreme Court a worker fell ten metres from a construction site, thus suffering total physical disablement. No safety nets or other protective mechanisms had been put in place by the employer. The worker brought an action challenging the constitutionality of article 39(1) of the Occupational Risks Law (LRT), which exempted employers from civil liability for all injuries incurred on the job and also limited occupational risk indemnification to material damages, particularly lost wages. The Constitutional Court held that the LRT’s indemnification regime was unconstitutional and ordered the employer to fully compensate the victim.89 Such protection of the law should also cover, mutatis mutandis, persons with disabilities to prevent further impairments. Accessibility of relevant information related to machinery, tools, toxic substances, accessibility of emergency and evacuation procedures are just some of the issues to consider when designing a health and safety policy and practice. In addition, not all employees are exposed to the same variety of risks and hazards in the same working environment. Preparing an accurate job description that provides sufficient guidance on the essential and non-essential functions of the position can help to better define and limit possible risks. See Keith Smith, Health and Safety for Learning Disability Workers (Sage 2012). ILO, ‘Prevención Inclusiva: Guía con las Nueve Claves para una Prevención Inclusiva de los Riesgos Laborales’ OIT/ SOFOFA (ILO 2013), available at: . 89 See Aquino, Isacio v Cargo Servicios Industriales SA Case No A 2652 XXXVIII (2004). 87 88
bantekas, pennilas, and trömel
780
Work and Employment
Furthermore, access to safe drinking water and sanitation facilities for both women and men with disabilities is a key issue and indeed one of the main barriers to employment in some developing countries.90
4.2.3 Equal Opportunity to Be Promoted Much too often the focus of measures in the area of employment of persons with disabilities is exclusively on promoting their entry into the labour market and not enough attention is paid on how to ensure that people with disabilities have the same opportunities for career advancement. It is, therefore, important to ensure that persons with disabilities have equal opportunities to progress in employment. As stated in General Comment No 23 of the CESCR, ‘the reference to equal opportunity requires that hiring, promotion and termination not be discriminatory’.91 General Comment No 2392 continues by stating that: ‘equality in promotion requires the analysis of direct and indirect obstacles to promotion . . .’ The use of specific measures might also be necessary. Access to training provided by the employer (directly or through external training providers) needs to be accessible to employees with disabilities and reasonable accommodation needs to be provided, when necessary.93 It is also important to ensure that reasonable accommodation is provided, when required, in case of a change of job.
4.2.4 Rest, Leisure, Working Hours, and Holidays The right to rest, leisure and recreation is not new and all of its elements have been recognized as far back as the UDHR.94 Article 24 UDHR notes that ‘everyone has the right to rest and leisure, including reasonable limitation of working hours and periodic holidays with pay’. It should be emphasized that article 24 UDHR follows the provision on the right to work and consequently rest and leisure are associated with the right to work, despite the use of the word ‘everyone’. ‘Everyone’ in the context of the UDHR does not refer to all persons, but only to those in employment. As a result, the rights in article 24 UDHR are only available to employed persons and not also to those out of employment.95 This result is further confirmed in article 7(d) ICESCR, where in the context of the right to work, parties are obliged to ensure: ‘Rest, leisure and reasonable limitation of working hours and periodic holidays with pay, as well as remuneration for public holidays’. Leisure studies experts argue that the right to leisure in the UDHR comprises three distinct sub-rights, namely the right to rest (article 24), the right to cultural participation
90 See Sian White et al, ‘A Qualitative Study of Barriers to Accessing Water, Sanitation and Hygiene for Disabled People in Malawi’ (2016) 11 PLOS One, available at: . 91 92 CESCR General Comment 23 (n 80) para 31. ibid 32. 93 See US Equal Employment Opportunity Commission, ‘Enforcement Guidance: Reasonable Accommodation and Undue Hardship Under the Americans with Disabilities Act (2002)’ (general principles), (accessed 28 November 2017) at: . 94 See David L Richards, Benjamin Carbonetti, ‘Worth What We Decide: A Defense of the Right to Leisure’ (2013) 17 International Journal of Human Rights 329; Cara Aitchison, ‘From Leisure and Disability to Disability Leisure: Developing Data, Definitions and Discourses’ (2003) 18 Disability and Society 955; Jerome Singleton, Simon Darcy, ‘Cultural Rights, Disability, Inclusion and Citizenship: Moving Beyond Leisure in Isolation’, (2013) 16 Annals of Leisure Research 183. 95 Matthias Risse, ‘A Right to Work? A Right to Leisure? Labor Rights as Human Right’ (2009) 3 Law & Ethics of Human Rights 1.
bantekas, pennilas, and trömel
Article 27
781
(article 27(1)), and the right to travel (article 13).96 The right to rest, leisure, and recreation in the aforementioned instruments are applicable in the context of article 27(1)(b) CRPD, but not in the context of article 30(5) CRPD, which is applicable to the right to rest, leisure and recreation outside an employment context. The reader should consult the commentary on that provision for further guidance. Many employers (and states) conflate the right of an employee to rest, leisure, and recreation with the right to sick leave or paid annual leave. All of these are distinct, serve different purposes and are protected under distinct legal regimes. The CJEU has emphasized that the right of a worker to sick leave serves a fundamentally different purpose from the right to paid annual leave. In the case at hand, the workers in question were ill and incapacitated from work, but were not persons with disabilities. The principle applies mutatis mutandis to disabled workers as to any other worker. The CJEU noted in particular that: The purpose of the entitlement to paid annual leave is to enable the worker to rest and to enjoy a period of relaxation and leisure. The purpose of the entitlement to sick leave is different. It is given to the worker so that he can recover from illness . . . [T]he right to paid annual leave is not extinguished at the end of the leave year and/or of a carry-over period laid down by national law where the worker was on sick leave for the whole or part of the leave year and has not actually had the opportunity to exercise the right conferred on him.97
One of the elements that falls under the current heading concerns flexible work arrangements. For some persons with disabilities, flexible work arrangements (reduced working hours, combining work from home and in the workplace) might be an appropriate solution to their employment situation. If there is a general company policy allowing its employees to exercise telework, people with certain impairments could opt for this like all other employees. If there is no general company policy, it could also be addressed in the form of reasonable accommodation. Caution should, however, be applied to present these options (in particular telework) as particularly appropriate for persons with disabilities. A number of countries, in particular in Eastern Europe and Central Asia, establish in legislation specific measures for people with disabilities, including extra days of annual leave, reduced working days or weeks, usually with full wage. Often, these are measures that were established for persons who acquired an impairment while at work, as a result or not of a work accident, and these measures were seen as a form of compensation. If these measures were to be provided as a form of reasonable accommodation to those persons with disabilities who so require, this would be in line with the CRPD. However, making a general assumption that all persons with disabilities need extra days off and reduced working days, is not only a barrier to the employment of persons with disabilities, but is grounded on charity and medical approaches to disability superseded by the CRPD.
4.2.5 Protection from Harassment The recommendations reflected in General Comment No 23 of the CESCR seem particularly relevant in this context. It states that: ‘Legislation, such as anti-discrimination 96 The right to leisure articulated in articles 27(1) and 13 UDHR applies to everyone irrespective of being in employment or not. See Anthony J Veale, ‘Human Rights, Leisure and Leisure Studies’ (2015) 57 World Leisure Journal 249. 97 Gerhard Schultz-Hoff v Deutsche Rentenversicherung Bund; Stringer and Others v Her Majesty’s Revenue and Customs, Joined Cases C-350/06 and C-520/06, (2009) ECR I-00179 paras 25, 55.
bantekas, pennilas, and trömel
782
Work and Employment
laws, the penal code and labour legislation, should define harassment broadly, with explicit reference to sexual and other forms of harassment, such as on the basis of sex, disability, race, sexual orientation, gender identity and intersex status.’98 General Comment No 23 goes on to provide useful guidance on what a national policy should include. Accessibility of information, of training materials and courses, as well as accessibility of complaint and redress procedures are prime candidates.99 The UK Equality Act 2010 in article 26 specifically refers to disability as one of the characteristics protected from harassment and the EU directive on equal treatment in the workplace in article 2 includes harassment as one form of discrimination. It should be noted, however, that in some jurisdictions employers possess a statutory defence against claims of harassment, where, although the harassment allegation is true, they have taken all appropriate action to prevent and remedy. In the USA, the Supreme Court in two distinct cases has developed what is known as the Faragher-Ellerth affirmative defence.100 Employers may escape liability in tort if: a) no tangible adverse employment action was taken against the employee; b) the employer exercised reasonable care to prevent and promptly correct any harassing behaviour against an employee; and c) the employee failed to take advantage of preventative opportunities provided for by the employer.101 It is also important to note that the ILO has started work towards an ILO standard (Convention and/or Recommendation) on violence and harassment in the workplace. The expert meeting on violence and harassment in the workplace convened by the ILO in October 2016 included the following paragraph in its final report: Violence and harassment can potentially affect everyone, but it affects specific groups disproportionately, where certain conditions exist. Imbalanced power relationships, including due to gender, race and ethnicity, social origin, education and poverty could lead to violence and harassment. Discrimination based on these and other grounds, including disability, HIV status, sexual orientation and gender identity, migrant status and age, are also important factors. Workplaces where the workforce is dominated by one gender or ethnicity might be more hostile to people not conforming to established gender norms or individuals coming from under-represented groups. Where grounds of discrimination intersect, such as gender and race or disability, the risk of violence and harassment is exacerbated. A key additional risk factor is a culture of impunity. (emphasis added)102
It is also worthwhile noting that the CRPD Committee has referred to harassment in the workplace in one of its concluding observations.103
4.2.6 Remedies and Redress of Grievances It is important to ensure that states establish enforcement mechanisms, including tailored remedies for non-compliance with these provisions, as well as adequate access for persons with disabilities to redress of grievances in connection with the right to work and
99 CESCR, ‘General Comment No 23’ (n 80) para 48. ibid. Faragher v City of Boca Raton, 524 US 775 (1998) and Burlington Industries, Inc v Ellerth, 524 US 742 (1998). 101 The latter (c) also includes failure by the employee with disability to report the harassment to the appropriate supervisor; see Cooper v CLP Corp, 679 Fed Appx 851 (11 Cir 2017). 102 ILO, ‘Final Report: Meeting of Experts on Violence against Women and Men in the World of Work’ ILO Doc MEVWM/2016/7 (2016), available at: . 103 CRPD Committee, ‘Concluding Observations on the Initial Report of Mexico’ UN Doc CRPD/C/ MEX/CO/1 (27 October 2014) para 52. 98
100
bantekas, pennilas, and trömel
Article 27
783
employment.104 In Miskitu Divers v Honduras, the Miskitu indigenous peoples were hired as free divers and because of threats, pressure, and poor working conditions acquired diving-related impairments, as well as considerable numbers of deaths. Although Honduras possesses legislation for bringing grievances, the Inter-American Commission of Human Rights was of the opinion that access to justice and remedies against the employers was impossible because of: the extreme poverty and disabilities of the alleged victims, the shortcomings of the administrative and judicial system in the State of Honduras, the actions of the alleged victims and their next-of-kin to seek justice [and] the situation and context in which the violations have allegedly occurred.105
General Comment No 23 of the CESCR provides useful guidance on what states can do to implement these measures.106 The role of the labour inspectorate is of particular relevance in this context and it would be important to ensure that labour inspectors possess adequate knowledge on the rights of persons with disabilities. Furthermore, establishing indicators and benchmarks will allow monitoring the implementation of these conditions and it is important to include disaggregation by disability in the measurement criteria. The right to make grievances is part of a much broader entitlement, namely the right to fair trial. While in some cases the employee with disability will be able to file a grievance with a private employer, in many cases he or she may have no further remedies against the assessment of the employer’s grievance procedures. This includes access to judicial review concerning all phases of employment. Right to fair trial standards and access to justice should apply to all work-related grievance mechanisms for disabled workers. This may further include access to free legal advice and to counsel of one’s choice for indigent workers with disabilities as well as reasonable accommodation regarding the grievance procedure itself. The right to file a grievance and pursue a judicial or other remedy may effectively be violated by the complexity of the envisaged procedures or strict adherence to bureaucracy.107 Although states possess wide discretion in designing grievance mechanisms, these may not be of a nature to effectively deny a person with disability access to justice and any infringement of the procedure by an applicant with disability should not lead to a wholesale dismissal of his or her case, in accordance with the principle of proportionality among others.
4.3 Sub-paragraph 1(c) As mentioned in the travaux préparatoires section, this paragraph initially included the wording ‘in accordance with national laws of general application’, which was finally replaced with the wording ‘on an equal basis with others.’ This was a reminder that in some states, but certainly not all, some workers (with and without impairments) do not 104 CRPD Committee, ‘Concluding Observations on Luxemburg’ para 47(b); CRPD Committee, ‘Concluding Observations on Gabon’ para 59. 105 Opario Lemoth Morris et al [Miskitu Divers] v Honduras, Report, Case No 1186-04, Report No 121/09, OEA/Ser L/V/II, doc 51 corr 1 (2009) (IACmHR 12 November 2009) para 43. 106 CESCR General Comment 23 (n 80) paras 54 and 55. 107 In Case GKPI 11-2093 (2012), decided by the Russian Supreme Court, the plaintiff contracted a disease following his engagement with the Chernobyl nuclear reactor and sought employment compensation. However, he did not submit an official report concerning an accident at work or an occupational disease, which lower courts had held were necessary for a medical examination to determine his degree of impairment, which was also demanded under law. The Supreme Court’s reliance on a technicality, which could subsequently have been remedied, is a poor ground for denying the plaintiff an otherwise lawful entitlement.
bantekas, pennilas, and trömel
784
Work and Employment
have access to labour and trade union rights.108 The reporting guidelines of the CRPD Committee include a request to states parties to report on ‘[M]easures taken for the promotion of the trade union rights of persons with disabilities.’109 One of the consequences of article 27 CRPD is to ensure that persons with disabilities working in sheltered employment also have the same rights as other workers to exercise their labour and trade union rights.110 The question arises as to whether this article could be interpreted in such a way that trade unions should make relevant changes in their operation to ensure that workers with disabilities can effectively participate in trade union activities, or whether promoting this could be seen as an interference by states in the independence of these organizations. The reference in article 4 to protection from discrimination by any organization applies in our view also to trade unions, both in their role as employer as well as in their role as organizations representing workers. The CRPD Committee has so far addressed this issue only in its concluding observations on Serbia, where it expressed its concerns that ‘persons with disabilities cannot establish in practice a representative trade union in the open labour market owing to their low representation’.111 A greater inclusion of persons with disabilities in trade unions could lead to increased attention with respect to issues related to employees with disabilities by employers (public and private). This may also be achieved through inclusion of relevant criteria in collective bargaining agreements, including protection from discrimination on the ground of disability and the provision of reasonable accommodation.
4.4 Sub-paragraph 1(d) The focus of this paragraph is on ensuring that persons with disabilities can benefit from mainstream vocational training and placement services. This is important as still too often the focus of states continues to be to provide specialized/segregated services targeting only persons with disabilities instead of ensuring that mainstream services are prepared to include persons with disabilities. The reporting guidelines of the CRPD Committee refer to this issue when requesting states to report on ‘accessibility of persons with disabilities to open employment and vocational training services’.112 The obligation enshrined in sub-paragraph 1(d) requires states to proactively ensure that their mainstream vocational training services are inclusive of persons with disabilities. There are a number of states that have taken measures to make their mainstream vocational training systems inclusive of persons with disabilities, including Bangladesh, Brazil, Costa Rica, Ethiopia, and Zambia.113 In order for this obligation to be effectively implemented, the following measures seem to be relevant: (i) explicit provisions in the relevant legislation that covers vocational training in order to protect persons with disabilities from discrimination on the basis of disability, including through the provision of reasonable accommodation; 108 See ILO, ‘Trade Union Action: Integrating Disabled Persons into Working Life’ Labour Education 1998/4 No 113. 109 CRPD Committee, ‘Guidelines on Treaty-Specific Document to be Submitted by States Parties under Article 35, paragraph 1, of the Convention on the Rights of Persons with Disabilities’ UN Doc CRPD/C/2/ 3 (18 November 2009) para 10. 110 See eg Bernd Waas, The Right to Strike: A Comparative Overview (Kluwer 2014); Marco Rocca, Posting of Workers and Collective Labour Law: There and Back Again: Between Internal Market and Fundamental Rights (Intersentia 2015). 111 CRPD Committee, ‘Concluding Observations on Serbia’ (n 60) paras 53–54. 112 CRPD Committee Guidelines (n 109) para 7. 113 ILO Policy Brief, ‘Making TVET and Skills Systems Inclusive of Persons with Disabilities’ (ILO 2017).
bantekas, pennilas, and trömel
Article 27
785
(ii) inclusion of an explicit reference to persons with disabilities in the general policy regulating vocational training; (iii) ensuring accessibility of premises, information and materials; (iv) provision of training on the rights of persons with disabilities to all staff working in these organizations; (v) foreseeability of funds that would cover reasonable accommodation measures. The ILO’s Inclusion of People with Disabilities in Vocational Training: A Practical Guide, provides detailed guidance to staff of vocational training institutions on how to ensure inclusion of trainees with disabilities.114 The reference to continuing training ensures that measures should not only target persons with disabilities that are undergoing vocational training to enter the labour market, but also people with disabilities who participate in training to advance in their career.115 In both cases, it is important to ensure that these courses are accessible to persons with disabilities, but also provide reasonable accommodation, when required in an individual case. Sometimes, persons with disabilities are prevented from taking part in mainstream training because they do not meet several entry requirements. This can be addressed by revising, where needed, these entry criteria through the avoidance of discriminatory approaches and criteria that are not essential and which would likely lead to many persons with disabilities being unable to fulfil them. Furthermore, one could argue that the term ‘enable’ also encompasses the obligation to provide the required support to those persons with disabilities in need of prior training in order to meet the entry requirements of mainstream vocational training institutions. Similar obligations result from this sub-paragraph 1(d) to ensure that public employment services, where these exist, are inclusive of persons with disabilities. This would mean, among others, accessibility of premises, websites, and information, disability awareness of staff, as well as, when so required, measures targeting job seekers with disabilities. States should consider that ensuring mainstream services inclusive of persons with disabilities does not replace the need for targeted services when these are required. There should be coordination between the mainstream and the targeted services to improve complementarity. While in many states vocational training and employment services are provided by public institutions, it is also an obligation on states to ensure that inclusiveness of persons with disabilities should be guaranteed when these services are provided by private institutions, in particular when they are supported by public funds or considered as falling within the domain of public service.
4.5 Sub-paragraph 1(e) The first question that comes up when reading this rather broad and aspirational paragraph relates to what it adds to the article. Indeed, career advancement is specifically mentioned in paragraph 1(a),116 return to employment is dealt in more detail in paragraph 1(k) and assistance in finding and obtaining employment is also covered in paragraph 1(d). 114 ILO, Inclusion of People with Disabilities in Vocational Training: A Practical Guide (ILO 2013), available at: http://www.ilo.org/wcmsp5/groups/public/---dgreports/---gender/documents/publication/wcms_230732. pdf. 115 See Archibald v Fife Council, [2004] UKHL 32 (n 75). 116 See David R Strauser (ed), Career Development, Employment and Disability in Rehabilitation: From Theory to Practice (Springer 2013).
bantekas, pennilas, and trömel
786
Work and Employment
Having a paragraph that covers such a broad number of issues may be viewed as a reminder that states should approach the employment of persons with disabilities in a comprehensive way and should not only focus on persons with disabilities finding a job, but also being able to progress in employment. This paragraph could also provide the necessary coverage for the provision of supported employment services to ensure that those persons with disabilities, including persons with intellectual disabilities, who require this type of support, will receive it and will be able to find employment in the open labour market.117 One way in which states could address the implementation of this paragraph would be to have a national strategy promoting the employment of persons with disabilities, in such a manner that would seek to address comprehensively all the actions required to promote the employment and career advancement of persons with disabilities and to ensure that these activities are well coordinated and complement each other. A good example of this is the 2010–20 EU Strategy on Disability.118 Having a specific strategy would, however, not replace the relevance of including persons with disabilities in any mainstream national employment policy or other relevant mainstream initiatives promoting, for instance, youth employment. The ILO policy brief on how to include persons with disabilities in national employment policies might be useful in this regard.119 The reporting guidelines of the CRPD Committee introduce another element when requesting states to ‘provide information on the work of persons with disabilities in the informal economy in the state party, and the measures taken to enable them to move out of the informal economy . . .’.120 The reporting guidelines also address measures taken by states to ensure access of students with disabilities to the general labour market and measures taken to ensure various forms of work, such as work on location, telecommuting and subcontracting, as well as work opportunities offered by new communication technologies. It is clear that without the obligation to promote the integration or re-integration of persons with disabilities in the labour market, their access thereto would be made very difficult for many of them. These obligations include the provision of reasonable accommodation and in addition job applicants with disabilities should be assessed taking into account, where required, reasonable accommodation. It is now settled that the provision of reasonable accomodation is an integral part of the non-discrimination regime established under the CRPD. In Milton v Nicholson, the applicant had depression and sought vocational rehabilitation services to support her return to the workforce. She was offered a support clerkship with the Department of Veterans Affairs (VA) under condition that she provided the VA documents indicating she had fully recovered from her disability, and that the support clerk position was suitable full time employment for her. The VA withdrew its offer of employment upon finding out that the applicant had not fully recovered from her depression and/or assurances that she was suitable for the post. The Fifth Circuit 117 See Colin Lindsay, Donald Houston (eds), Disability Benefits, Welfare Reform and Employment Policy (AIAA 2013). 118 EU Commission, ‘European Disability Strategy 2010-2020:A Renewed Commitment to a Barrier-Free Europe’ COM(2010) 636 final (15 November 2010), available at: . 119 ILO, Guidance Note: Inclusion of People with Disabilities in National Employment Policies (ILO 2015), available at: . 120 CRPD Committee Guidelines (n 109) para 12.
bantekas, pennilas, and trömel
Article 27
787
found that the VA had not discriminated against the applicant because of her disability,121 but this is debatable. In any event, the case is emblematic of the absence of reasonable accommodation to re-integrate a person with disability in the workforce, which is clearly discriminatory.
4.5.1 The State Obligation to Counter Exclusion by Promoting Employment According to the CESCR, states are obliged to counter unemployment by setting up employment policies that stimulate economic growth and development and raise living standards.122 Moreover, in order to facilitate access to work they must provide appropriate vocational and technical training and establish their national economies in a manner fostering meaningful job creation. This obligation applies equally to persons with disabilities through the different measures mentioned in the CRPD. Significantly, the CESCR emphasizes that: States parties that are members of international financial institutions, in particular the International Monetary Fund, the World Bank and regional development banks, should pay greater attention to the protection of the right to work in influencing the lending policies, credit agreements, structural adjustment programmes and international measures of these institutions. The strategies, programmes and policies adopted by states parties under structural adjustment programmes should not interfere with their core obligations in relation to the right to work and impact negatively on the right to work of women, young persons and the disadvantaged and marginalized individuals and groups.123
This observation by the CESCR stems from the IMF practice of disregarding the right to meaningful employment and associated benefits in its design of structural adjustment programmes for indebted nations (although without exception, in all its official reports and lending conditions the IMF emphasizes quite the opposite). Among its lending conditions to Greece—between 2010 and 2012—the IMF demanded the dismissal of one-third of the country’s civil servants, the reduction of as much as 50 per cent of the remainder’s salaries,124 below-living-standards salaries for the bulk of private sector workers and the introduction of fees for basic and advanced healthcare. At the same time, and while the economy was shrinking, the IMF and other bilateral and multilateral lenders, both public and private, demanded the imposition of high taxes, particularly VAT, on all goods and services, the ultimate aim being to service the country’s debt. This obviously had a detrimental effect on job creation and unemployment rose to almost 20 per cent in January 2012—which does not take into consideration the prospective public sector dismissal demands and those not officially registered as unemployed—compared to less than 5 per cent in Austria during the same time. The impact of austerity on persons with disabilities’ employment opportunities are under-explored,125 particularly since most persons with disabilities in developing economies work in the informal economy. Spending cuts have disproportionately affected Milton v Nicholson, No 07-20201, 2007 WL 2695625 (5th Cir 2007). CESCR General Comment 18 (right to work) UN Doc E/C12/GC/18 (6 February 2006) paras 26–27; see also Jeremy Sarkin and Mark Koenig, ‘Developing the Right to Work: Intersecting and Dialoguing Human Rights and Economic Policy’ (2011) 33 HRQ 1. 123 ibid, General Comment No 18 para 30. 124 Although the IMF’s suggested cuts represent a decrease of 8–10 per cent in salaries and pensions, the real loss to income is closer to 40–50 per cent, if one considers elimination of salary-related benefits, introduction of fees for health and other services and sharp increases in taxes on income, property and others. 125 See, however, EDF, ‘Report on the Impact of the Crisis on the Rights of Persons with Disabilities’ 4–5, available at: ; see also Rupert 121 122
bantekas, pennilas, and trömel
788
Work and Employment
persons with disabilities in the workplace, as they have often been targets for dismissal by employers wishing to reduce their workforce. There is a clear need for disaggregated data, which takes into consideration disability and gender, those in the formal and informal economy, impact on personal income, impact on family members, impact on the right to healthcare and pension, short-term and long-term mental wellbeing and other criteria. No matter what austerity measures are put in place by states following a financial crisis the curtailment of reasonable accommodation by private employers or its relaxation by the state will increase disproportionately the negative impact on persons with disabilities and such measures are discriminatory in all cases. Even so, there is significant scope for positive measure on the part of states. States are under an obligation to promote employment opportunities and actions such as high taxes and excessive bureaucracy which stifle investment, entrepreneurship and in turn decrease employment opportunities for disabled workers pertain to the positive dimension of the state obligation to foster and promote meaningful employment.
4.6 Sub-paragraph 1(f) It is a fact in most countries that people with disabilities are overrepresented among those that earn their living through self-employment, mostly in the informal economy.126 In countries where the majority of the general population works in the informal economy, the opportunities for persons with disabilities to find waged employment in the private, public, or non-profit sector are very low. It is, therefore, important to ensure that people with disabilities are supported in becoming self-employed, entrepreneurs, and start their own business. These are the three terms used in the paragraph and they are to some extent overlapping. In practical terms, states should ensure that the business development and other similar services provided by public authorities (or subcontracted to private organizations) to support self-employment and entrepreneurship are inclusive of persons with disabilities. This would mean, among others, accessibility of materials, information, courses, financing tools, including microfinance, as well as the provision of reasonable accommodation, when needed in a particular case. The reference to the development of cooperatives seems to be targeted to supporting (groups of ) persons with disabilities to come together and create a cooperative of persons with disabilities. While this is an option to consider as it fulfils the goal of free chosen employment, it would be relevant to ensure that persons with disabilities can become members of cooperatives that are not exclusively composed of persons with disabilities to promote inclusion.127 Self-employment/entrepreneurship or presence in a cooperative can be of particular relevance in the context of rural and remote areas, as well as small islands, where there is less or no presence of the public sector or private companies. It might also be the preferred livelihood option for indigenous persons with disabilities as it
Harwood, ‘The Dying of the Light: The Impact of the Spending Cuts, and Cuts to Employment Law Protections, on Disability Adjustments in British Local Authorities’ (2014) 29 Disability and Society 1511. 126 Studies from Indonesia, Sri Moertiningsih Adietomo et al, ‘Persons with Disabilities in Indonesia’ (2004), as well as data from 2010 Population Census in Mongolia and Timor-Leste show that persons with disabilities are two to three times more likely to be self-employed than persons without disabilities. 127 See ILO, ‘Issue Brief: A Cooperative Future for People with Disabilities’ (ILO 2012).
bantekas, pennilas, and trömel
Article 27
789
could allow them to remain within their communities, as reflected in articles 20 and 21 of the UN Declaration on the Rights of Indigenous Peoples.128
4.7 Sub-paragraph 1(g) It is important to start by indicating that all the provisions mentioned in this article and in particular in paragraphs 1(a), 1(b), 1(j), and 1(k) also apply to the public sector. As mentioned in the analysis of the travaux préparatoires, some states questioned the need for this paragraph, arguing that all the other paragraphs apply to the public sector and that there was no need for an explicit reference to the public sector. However, the argument that the public sector, often the largest single employer in some countries, should lead by example was also well made and led finally to this short paragraph.129 Given the significant resources of states, both financial and otherwise, it is only natural that many domestic courts have held that the public sector (generally) enjoys a much higher burden of reasonable accommodation in terms of necessary expenditures and other actions.130 While the reporting guidelines of the CRPD Committee do not include any question focused on the obligations of the public sector in relation to article 27, many state parties’ reports provide some information on public sector employment of persons with disabilities, which has also led to some concluding observations to focus on this matter,131 including specific references to the use of targeted funding.132 In many countries the process of becoming a public sector employee is strongly regulated and differs from employment in the private or non-profit sector. Even countries that have a quota system that also applies to the public sector face significant difficulties in meeting these quotas, as the established procedures, even when accommodation efforts are being used, are often creating barriers for many people with disabilities to apply successfully for jobs in the public sector. To overcome these barriers, some public sector authorities (United States133) have put in place specific recruitment processes for targeting persons with disabilities, which seem to be an adequate way of complying with the provisions of this paragraph. Where these processes exist, people with disabilities should be able to apply through the general access procedures, where they should benefit from the relevant reasonable accommodations, if so required, but would also have the option to apply through a specific recruitment process. When using this specific access, it is important to ensure that people with disabilities who entered the public service through this process, are given the same opportunities for career progression as all other public sector employees. To address barriers resulting from the entry requirements, states may consider
128 UNGA Res 61/295 (13 September 2007); see also ILO, ‘Discussion Paper: Indigenous Persons with Disabilities: Access to Training and Employment’ (2015), available at: . 129 See (n 26). 130 See EU Network of Independent Experts on Disability Discrimination, ‘Baseline Study: Disability Discrimination Law in the EU Member States’ (November 2004) 53–54. 131 CRPD Committee, ‘Concluding Observations on Honduras’ UN Doc CRPD/1/HND/CO/1 (4 May 2017), paras 57–58; CRPD Committee, ‘Concluding Observations on Jordan’ UN Doc CRPD/1/JOR/CO/ 1 (15 May 2017), paras 49–50; CRPD Committee, ‘Concluding Observations on Uruguay’ UN Doc CRPD/ 1/URY/CO/1 (31 August 2016) paras 57–58; CRPD Committee, ‘Concluding Observations on Guatemala’ UN Doc CRPD/C/GTM/CO/1 (30 September 2016) para 63. 132 CRPD Committee, ‘Concluding Observations on Canada’ (n 68) paras 47–48. 133 Available at: .
bantekas, pennilas, and trömel
790
Work and Employment
organizing training courses targeting persons with disabilities in order to provide them with the adequate skills to access public jobs to be filled. Collective bargaining agreements that are specific to the public sector should include explicit references to disability as one of the non-discrimination grounds and also include measures promoting the employment and retention of employees with disabilities, including explicit references to reasonable accommodation. Some countries (Ireland134) use targets instead of quotas and include annual reporting obligations by all relevant public authorities that inform how they are complying with these targets and the measures they have taken or are planning to take. An issue that comes up especially in the context of targets is to determine who classifies as a person with disability for the purpose of the target. One way of tackling this issue, especially when there is no official disability certification system, is to ask people to self-identify as persons with disabilities or ask them whether they have functional limitations that could be considered an impairment. This obviously raises confidentiality issues, especially for persons with mental health conditions that require not only protection of anonymity, but also a clear explanation by the public authority as to why this information is being collected and its relevance before obtaining consent where appropriate. International standards on personal data collection should be applied in this context.135 There are other public sector related options that should also be considered. One of these concerns public employment programmes that are funded by the public budget and which usually have the objective of providing employment (usually a number of working days per year) for people in rural areas by working on employment-intensive infrastructure projects. These programmes, found in many developing countries, should also be designed in a way that people with disabilities could benefit from. Also relevant in many countries is the role of state-owned enterprises. While their recruitment policies might be similar to those of the private sector, the fact that they are publicly owned, wholly or partially, should make them lead by example.
4.8 Sub-paragraph 1(h) The relevance of the private sector in ensuring the right to work of people with disabilities is fundamental, including in countries where the formal economy represents only a small percentage of employment.136 Very frequently used measures to promote private sector employment are quota systems.137 Quota systems are a form of affirmative action and are compatible with the CRPD. Some states and civil society organizations do not see this 134 National Disability Authority, ‘Employment of People with Disabilities’, available at: . 135 See analysis of data protection on Art 31(1)(a) CRPD in this Commentary. 136 See Recommendation 86/379/EEC of 24 July 1986 on the employment of disabled people in the Community—OJ L 225 (12 August 1986) 43; EC Council Resolution of 17 June 1999 on equal employment opportunities for people with disabilities—OJ C 186 (2 July 1999) 3; EU Parliament, ‘Code of Good Practice for the Employment of People with Disabilities’ (22 June 2005). 137 More than fifty countries apply quotas and their elaborate examination is beyond the scope of this chapter. See, by way of illustration, Tamako Hasegawa, ‘Japan’s Employment Measures for Persons with Disabilities: Centered on Quota System of “Act on Employment Promotion of Persons with Disabilities” ’ (2010) 7 Japan Labour Review 26, who explains that Japan’s system of ‘mandatory employment of persons with disabilities’ consists of the following two pillars: (i) a quota system which obligates employers to employ a certain percentage or more of persons with disabilities, and (ii) a payment system for employment of persons with disabilities which charges employers a sanction when they cannot achieve the legally-prescribed minimum employment rate.
bantekas, pennilas, and trömel
Article 27
791
strategy as the most appropriate to increase employment rates of persons with disabilities in certain contexts, particularly where they generate resistance, especially in the private sector where they are often perceived as an imposition, or by persons with disabilities because of their focus on impairment rather than capabilities. The CRPD Committee has made recommendations to those countries that have provided information on their quota system, in order, where relevant, to make them more effective. In particular, it has stated its concern that employers often prefer to pay the sanction or fee instead of employing persons with disabilities.138 The individual communication issued by the CRPD Committee in the case of A F v Italy139 shows the difficulty in applying quota legislation to a specific individual case. The petitioner, a registered person with disability, applied for a position at the University of Modena and Reggio Emilia. There was only one position vacant and the complainant obtained the third highest mark and was not appointed. After exhausting national remedies, he submitted a communication to the CRPD Committee arguing that Italian Law No.68/1999 requires employers with more than fifty employees to have at least 7 per cent of their workforce composed of people who are registered as persons with disabilities. Furthermore, the law required that public employers reserve up to half of positions to be filled through competitive exams for registered persons with disabilities. The CRPD Committee considered that the petitioner could not provide evidence to prove that there was an arbitrary decision by the national court of a breach of the individual rights of the complainant.140 In discussing this communication, Waddington considers the Committee’s decision completely understandable, but also highlights that a number of issues raised by the petitioner, indicating that job applicants with disabilities are disadvantaged and excluded from high-quality employment opportunities, might have deserved some attention by the CRPD Committee.141 Establishing a quota system cannot be seen as enough to promote the employment of persons with disabilities and many of the measures (legislative as well as policies and programmes) mentioned under other paragraphs of article 27 CRPD need also be in place. One possible affirmative action programme to promote the employment of persons with disabilities is to provide companies that meet certain objectives or targets of employment of persons with disabilities advantages in their access to public procurement contracts. A good example of this is the South Africa Broad-Based Black Economic Empowerment Act 53 of 2003.142 There are also many states (eg Spain, France, Poland, to cite just a few) that use financial incentives, which can take the form of lump sums, reductions in social charges and tax deductions. These incentives could be linked to extra costs incurred by the employer because of the provision of reasonable accommodation, including the purchase of equipment, the provision of sign language interpreters or the provision of a job coach.143 When CRPD Committee, ‘Concluding Observations on China’ (n 40). A F v Italy, CRPD Committee, Communication No 9/2012 UN Doc CRPD/C/13/D/9/2012 (19 May 2015). 140 ibid para 8.5. 141 Lisa Waddington, ‘Positive Action Measures and the UN Convention on the Rights of Persons with Disabilities’ (2016) 2 International Labour Rights Case Law 396–401. 142 Available at: . 143 The EU Parliament has identified that active labour market policies (ALMP) have yielded positive outcomes whereas passive labour market policies (PLMP) such as tax breaks or cash incentives are more controversial, and at least in some states they have not produced positive outcomes. See European Parliament, ‘The Employment Equality Directive: European Implementation Assessment’ (February 2016) 31–34. 138 139
bantekas, pennilas, and trömel
792
Work and Employment
providing financial incentives that do not cover additional costs incurred by employers, the risk is that this could be seen as compensating for a perceived reduced work capacity of persons with disabilities, therefore to some extent reinforcing the negative expectations that employers might have. In Gröninger et al v Germany, the applicant argued that although Germany had in place an integration subsidy system by which employers were enticed to hire workers with disabilities, this was generally ineffective and as a result Germany violated its obligation to promote persons with disabilities in the labour market. The CRPD Committee chastised this system because: in practice [it] requires employers to go through an additional application process, the duration and the outcome of which are not certain, and that the person with disability has no possibility to take part in the process. The policy seems to respond to the medical model of disability, because it tends to consider disability as something that is transitional and that, in consequence, can be ‘surpassed or cured’ with time. . . . The Committee also notes that general benefits, that are predetermined and presumably known to employers, exist to promote the employment of recent graduates without disabilities . . . The Committee also notes that, in the case of the author’s son, the above scheme appears to have served as a deterrent, rather than as an encouragement for employers. The Committee notes that article 27 of the Convention implies an obligation on the part of States parties to create an enabling and conducive environment for employment, including in the private sector. The Committee finds in particular that the apparent difficulties faced by potential employers when trying to gain access to the integration subsidy that they are entitled to for the employment of a person with disabilities affect the effectiveness of the integration subsidies scheme. The already mentioned administrative complexities put applicants in a disadvantageous position and may in turn result in indirect discrimination.144
It seems of particular relevance for states to cover the services that organizations can provide to the private sector in terms of job matching, advice on reasonable accommodation, disability awareness, as well as supported employment and individual placement support that are focused on persons with disabilities facing particular barriers to access the labour market.145 The use of reserved employment, where specific jobs, typically of a low level, are reserved for persons with disabilities is not in compliance with the CRPD, given that it does not usually provide the possibilities for career advancement. The practice of identifying jobs that can be covered by persons with specific types of impairments is also discriminatory, as it will lead to barriers in accessing jobs that have not been identified as ‘compatible’ with persons having a specific impairment146 and will further reinforce stereotypes on what persons with disabilities can and cannot do. At the same time, however, it is generally acknowledged that the state is not discriminating against persons with disabilities where it refuses the conferral of a professional qualification, such as a driving license for heavy goods vehicles, on medical grounds, particularly visual acuity. The CJEU justified such treatment on the basis of road safety requirements.147 Each case, of course, should be
144 Gröninger et al v Germany, Communication No 2/2010, Views of the Committee UN Doc CRPD/C/ D/2/2010 (7 July 2014) para 6.2. 145 See Robert E Drake, Gary R Bond, Deborah R Becker (eds), Individual Placement and Support: An Evidence-Based Approach to Supported Employment (OUP 2012). 146 CRPD Committee, ‘Concluding Observations on China’ (n 40) para 41. 147 Wolfgang Glatzel v Freistaat Bayern, Case No C-356/12, ECLI:EU:C:2014:350.
bantekas, pennilas, and trömel
Article 27
793
assessed on its own particular merits, taking into consideration the available technical and live support available and applicable both as accessibility and reasonable accommodation.
4.9 Sub-paragraph 1(i) The wording of this paragraph was carefully chosen to reflect the fact that in the context of employment, reasonable accommodation is not something that will be directly provided by the state, but that it will have to be provided by the employer or the organizations providing any of the services mentioned in article 27. The benefits of reasonable accommodation to both workers with disabilities and employers have been documented manifold.148 The CRPD innovates on the principle of non-discrimination by including, for the first time in an international human rights treaty,149 denial of reasonable accommodation in the definition of discrimination on the basis of disability.150 While reasonable accommodation traces its origin in ensuring equal exercise of religious rights,151 it was first introduced in disability-specific legislation in the realm of employment.152 Reasonable accommodation is an anti-discrimination measure that applies in individual cases and constitutes an immediate obligation upon states parties to the CRPD.153 This measure is a new tool in international human rights law that bridges the gap between general obligations that are progressive and those that are of immediate realization, to tailor anti-discrimination solutions to individuals.154 The CRPD reinforces the obligation to provide reasonable accommodation, as stated in article 5(3), in the workplace by including a specific reference also in this paragraph. Reasonable accommodation is limited by the concept of ‘disproportionate or undue burden’.155 Entities responsible for providing reasonable accommodation are required to perform an objective analysis of proportionality in order to conclude if they can deny the requested accommodation without incurring some form of discrimination.156 The CRPD Committee has consistently recommended the inclusion of reasonable accommodation in legislation and to effectively provide it when already in law and policy.157 Notwithstanding the numerous recommendations of the CRPD Committee regarding 148 See European Parliament Policy Department, Study on ‘Reasonable Accommodation and Sheltered Workshops for People with Disabilities: Costs and Returns of Investments’ (2015) 12, which showed that EU member states offer grants or subsidies to employers to adapt their workplaces for people with disabilities, which in turn evinces that ‘investments in reasonable accommodation are cost beneficial and provide a return in terms of increased productivity and reduced absenteeism’. 149 It should, of course, be recalled that Art 5 of EC Council Directive 2000/78 (n 8) equally requires member states to provide reasonable accommodation to persons with disabilities in their workplace, as a matter of equal treatment. 150 Art 2 CRPD; see also OHCHR Report (n 48) para 23; Michael Ashley Stein et al, ‘Accommodating Every Body’ (2014) 81 Chicago Law Review 689–756. 151 See Lori G Beaman, Reasonable Accommodation: Managing Religious Diversity (UBC Press 2013). 152 153 154 OHCHR Report (n 48) para 28. ibid para 33. ibid para 35. 155 156 ibid para 31. ibid para 40. 157 CRPD Committee, ‘Concluding Observations on Bolivia’ (n 67) para 62; CRPD Committee, ‘Concluding Observations on Colombia’, UN Doc CRPD/C/COL/CO/1 (29 September 2016) paras 60–61; CRPD Committee, ‘Concluding Observations on Ethiopia’ UN Doc CRPD/C/ETH/CO/1 (3 November 2016) paras 59–60; CRPD Committee, ‘Concluding Observations on Guatemala’ UN Doc CRPD/C/GTM/ CO/1 (29 September 2016) paras 63–64; CRPD Committee, ‘Concluding Observations on Lithuania’ UN Doc CRPD/C/LTU/CO/1 (11 May 2016) para 52; CRPD Committee, ‘Concluding Observations on Portugal’ UN Doc CRPD/C/PRT/CO/1 (19 May 2016) para 50; CRPD Committee, ‘Concluding Observations on Serbia’ (n 60) paras 53–54; CRPD Committee, ‘Concluding Observations on Slovakia’ (n 68) para 74; CRPD Committee, ‘Concluding Observations on Uganda’ UN Doc CRPD/C/UGA/CO/1 (12 May 2016) 53.
bantekas, pennilas, and trömel
794
Work and Employment
reasonable accommodation, it has provided little guidance on how to implement it in the workplace or otherwise.158 The most complete guidance from the Committee on how to implement reasonable accommodation is reflected in the Jungelin case, an individual communication against Sweden where the Committee, by agreeing with the criteria implemented by the state, endorsed the relevant criteria.159 It should be highlighted that the Committee voted on this case with a dissident vote expanding on the selected criteria of analysis.160 In the above mentioned decision, the Committee recognized that the objective criteria to justify the denial of reasonable accommodation without committing discrimination was properly evaluated and that the ‘margin of appreciation doctrine’ of the European Court of Human Rights would not allow for the Committee to decide on a violation of the right to work and employment or a denial of reasonable accommodation.161 The margin of appreciation doctrine gives international bodies adjudicating on human rights cases the possibility to provide states parties a leeway of discretion on how they decide to implement their obligations under international human rights law.162 Sweden presented in the case the following criteria of objective justification: (i) the cost of the measures in relation to the employer’s ability to pay for them; (ii) the actual possibilities of implementing the measures and the estimated impact of the measures on the person with disability; (iii) the possibility to implement the measures in the workplace to be taken into account; (iv) the effect of the measures taken on the disabled person’s ability to do the job in question; (v) the duration of the employment.163
The dissenting opinion in the decision emerged to enable the Committee to examine these criteria in individual communications, considering that the objective criteria would not fall under the margin of appreciation doctrine, indicating that these should include, inter alia, (i) the measures of accommodation were requested to promote the employment of a person with a disability, with the professional capacity and experience to perform the functions corresponding to the position for which he or she applied; and (ii) the public or private company or entity to which the candidate applied can reasonably be expected to adopt and implement accommodation measures.164
It also added that: ‘the benefit for other employees with disabilities must also be taken into account when assessing reasonableness and proportionality, in compliance with articles 5, 9, and 27 of the Convention’.165 The dissenting vote also indicated that Sweden did not properly evaluate the financial support that could have been provided for implementing the required accommodation.166 During the seventeenth session of the Committee, it
OHCHR Report (n 48) para 37. Marie-Louise Jungelin v Sweden, Communication No 5/2011, Views of the CRPD Committee UN Doc CRPD/C/12/D/5/2011 (14 November 2014). 160 ibid, Joint opinion of Committee members Carlos Rios Espinosa, Theresia Degener, Monthian Buntan, Silvia Judith Quan-Chang, and Maria Soledad Cisternas Reyes (dissenting). 161 ibid, paras 8.10, 8,11, and 10.5–10.6. 162 George Letsas, ‘Two Concepts of the Margin of Appreciation’ (2006) 26 OJLS 705. 163 Jungelin Views (n 159) para 8.5. 164 ibid, Joint opinion of Committee members Carlos Rios Espinosa, Theresia Degener, Munthian Buntan, Silvia Judith Quan-Chang and Maria Soledad Cisternas Reyes (dissenting), para 4. 165 166 ibid para 5. ibid. 158 159
bantekas, pennilas, and trömel
Article 27
795
decided to create a working group to develop a General Comment on article 5 of the Convention and more guidance is expected to be developed thereon. After Jungelin, the UN Human Rights Council mandated the Office of the High Commissioner for Human Rights (OHCHR) to draft its annual study on the rights of persons with disabilities focusing on article 5 CRPD.167 The OHCHR’s study grouped the existing practices at national level and the positions adopted by the Committee presenting the following common elements stemming from them, indicating that accommodations must be: (i) legally and materially possible;168 (ii) relevant; and (iii) not constitute a disproportionate or undue burden.169 The ILO has also approached the provision of reasonable accommodation in a recently published guide.170 It indicates that in order to evaluate the proportionality of an accommodation, the following elements should be considered: (i) financial and other costs; (ii) the resources of the company; (iii) the company’s organization or functioning; (iv) the possibility of obtaining funding from a third party for the accommodation; (v) the potential benefits of the accommodation to persons other than the individual making the request; and (vi) the obligations of the company to protect the safety and health of the individual making the request and any other person who may be affected.171 Both the ILO and OHCHR have identified in their guidelines and study, respectively, that employers should evaluate in their proportionality test the financial implications of the accommodation.172 According to the OHCHR, the financial feasibility of the accommodation should be assessed considering the cash flow of the employer, focusing on the net-cost of the accommodation.173 It highlights that the assessment should go beyond the evaluation of cash flow considering the overall resources of the employer, indicating that the limit of the financial burden should be when the accommodation risks jeopardizing the core functions of the employer’s organization.174 There is already jurisprudence that confirms that the obligation of ‘reasonable accommodation’ applies also at the recruitment phase.175 Employers should explore funding opportunities in the public or private sector to provide the accommodation required.176 States should facilitate access for employers to UNHRC Res 31/6 (2016). See eg Rorrer v City of Stow 743 F 3d 1025 (6th Cir 2014) where the request of a fireman who had lost sight in one eye for placement either as a driver or fire inspector was turned down—this was held to be reasonable accommodation; see also Summers v Altarum Institute, Corp, 13-1645, 2014 WL 243425 (4th Circuit 2014). Under US law there is a difference under the ADA between a person ‘regarded’ as having a disability and someone recognized as such. The difference is significant: thus, the Fifth Circuit in Newberry v East Texas State University 161 F 3d 276 (5th Cir 1998) and the Sixth Circuit in Workman v Frito-Lay 165 F 3d 460 (6th Cir 1999) held that employees who are ‘regarded as’ having a disability are not entitled to reasonable accommodations. This is in contrast to the case law of the Eleventh Circuit, eg, as exemplified in DeAngelo v ConAgra Foods, Inc 422 F 3d 1220 (11th Cir 2005). 169 OHCHR Report (n 48) para 37. 170 ILO ‘Promoting Diversity and Inclusion through Workplace Adjustments: A Practical Guide’ (ILO 2016). 171 172 ibid 66–67. ibid 56; OHCHR Report (n 48) para 59. 173 OHCHR Report (n 48) para 59. In Wilson v Phoenix Specialty Mfg Co Inc No 06-1818, 2008 WL 186154 (4th Cir 2008) the Fourth Circuit dismissed the employer’s claim that it was financially unable to offer the plaintiff reasonable accommodation, since it was found to have paid bonuses to most of its employees after the plaintiff’s dismissal. 174 ibid para 60. 175 Harrington v East Coast Area Health Board, DEC—E/2002/001 (January 2002). 176 OHCHR Report (n 48) para 59. 167 168
bantekas, pennilas, and trömel
796
Work and Employment
grants or long-term loans at low or no interest rates to promote employment of persons with disabilities through the provision of reasonable accommodation.177 In order to avoid discrimination when denying an accommodation, employers should prove that they exhausted all possible financial support and that the available resources can jeopardize the existence of the organization or the performance of its core functions.178 Centralized funds can contribute to provide reasonable accommodation, relieving units within the organization to affront the burden of the accommodation with their own resources.179 Large companies and states should be held to higher standards in this regard. Strict scrutiny against discrimination should be applied by courts and anti-discrimination monitoring bodies to avoid abuse and to ensure effectiveness of public policies.180 The ILO and OHCHR agreed with the enhanced responsibility of states parties to provide reasonable accommodation when this may benefit other workers with disabilities.181 The rationale reflects the general obligation of states parties to progressively achieve inclusive societies, including by making the workplace accessible to all.182 Several, but not all,183 US courts of appeal have held that reasonable accommodation need not only be related to an ‘essential function’ of the disabled person’s job. In Feist v Louisiana, a former assistant attorney general for the Louisiana Department of Justice (LDOJ), was diagnosed with osteoarthritis of the knee. She requested that the LDOJ provide her with a free on-site parking space to accommodate her, but the request was denied and she was later dismissed. The Fifth Circuit, although finding that the dismissal was not retaliatory, argued that an accommodation did not have to relate to the essential function of a job.184 Including the denial of reasonable accommodation as a form of discrimination is the first necessary step for states to comply with this provision, which already flows from paragraph 1(a) of article 27 CRPD, when read in conjunction with article 2 CRPD. Having said this, if states want to ensure that reasonable accommodation is provided, it is not enough to have this element reflected in legislation, important as this is. States should complement the legal requirement and consider providing both technical assistance, as well as financial assistance. Technical assistance could include guidance in terms of providing examples of the type of reasonable accommodations that employers should consider to provide. These examples should consider the diversity of individual situations that might benefit from a reasonable accommodation. Technical assistance could also include guidance on specific physical accommodations in terms of furniture, computer equipment, software, etc.185 Introducing a helpline for employers and employees with disabilities is also a service that could be provided by states. Guidance could also be given on how companies could put in place policies on reasonable accommodation. 178 ibid; ILO Workplace Adjustments 2016 (n 170) 56. ibid para 60. 180 ibid para 61; ILO Workplace Adjustments 2016 (n 170) 25. ibid para 61. 181 ibid para 56; ILO Workplace Adjustments 2016 (n 170) 19. 182 See Roger Blanpain, Frank Hendrickx (eds), Reasonable Accommodation in the Modern Workplace: Potential and Limits of the Integrative Logics of Labour Law (Kluwer 2016). 183 See Knowles v Sherriff, 460 Fed Appx 833, 836 (11th Cir. 2012). 184 Feist v Louisiana 730 F 3d 450 (2013). 185 In HK Danmark, acting on behalf of Jette Ring v Dansk almennyttigt Boligselskab v HK Danmark, acting on behalf of Lone Skouboe Werge v Dansk Arbejdsgiverforening, acting on behalf of Pro Display A/S, in liquidation, [Joined Cases C-335/11 and C-337/11 HK Danmark (Ring and Skouboe Werge)], the applicants were dismissed by their employers, following a one-month notice under a rule in Danish labour law that allowed short-notice dismissals against employees who took 120 days paid sick leave in the last year. The applicants claimed that they could have continued working if accommodated with some special office furniture and a reduction in working time. The CJEU agreed that a reduction in working hours may constitute reasonable accommodation. 177 179
bantekas, pennilas, and trömel
Article 27
797
Some of the contributions received by the CRPD Committee show that the provision of reasonable accommodation in the context of mental health conditions is a particular challenge.186 To address these situations, specific guidance should be given to employers on how to address situations in which the request for a reasonable accommodation will require the disclosure by the person with disability of their impairment. In these circumstances, it is important to ensure confidentiality of the information, which should be limited to those staff members directly involved in the provision of reasonable accommodation. Furthermore, it is important to ensure that the information to be provided by the individual is restricted to showing the functional limitations that need to be accommodated, while not requiring the disclosure of the actual diagnosis. Other elements on which guidance could be given is how to differentiate essential and non-essential job requirements; how to tackle health and safety requirements; and how to deal with situations in which the reasonable accommodation consists of offering a new position to an employee who has acquired an impairment in an existing position and is unable to continue doing their original job. There are some examples of states that have produced codes of practices that reflect some of these elements and there is also the recent publication produced by the ILO,187 whose main target group is employers and which includes in its annex a model policy on reasonable accommodation. In terms of financial assistance, states could consider providing financial assistance to those accommodations that incur a cost, therefore limiting the possibility for employers arguing that the cost of the accommodation imposes a disproportionate burden. Not all reasonable accommodation encompasses actions entailing a financial burden on the employer. Employers are generally under an obligation to enter into dialogue with workers with disabilities in order to find a mutually acceptable adjustment. For example, under the ADA employers must engage in an interactive dialogue with employees with disabilities with a view to reaching a mutually beneficial reasonable accommodation. It has been held, however, that ‘an employee cannot prevail simply by demonstrating that his employer failed to engage in the interactive process; he also must show that this failure to engage in the process resulted in the failure to find an appropriate accommodation’.188 An issue that permeates article 27, as this applies to the regulation of the state of accommodations for persons with disabilities offered by private enterprises, is whether and to what degree such regulation also extends to the entire supply chain of the enterprise incorporated on its territory. There is a small, but visible trend, whereby some industrialized states insist on fundamental labour standards in bilateral investment treaties (BITs), thus imposing their own higher standards on companies investing in countries where fundamental labour standards are either weak or unenforceable,189 which could effectively encompass CRPD-related standards.190 This is an area of regulation where more research is required to flesh out the competing tensions between the various stakeholders. 186 Canadian Human Rights Commission, ‘Submission to the CRPD Committee on the Occasion of its Consideration of Canada’s First Periodic Report’ (February 2017), available at: . 187 See the Armenian and Moldovan CRPD concluding observations (n 72). 188 Fleetwood v Harford Sys Inc 380 F Supp 2d 688 701 (D Md 2005). 189 See fn to Art 3(1) of the 2015 Norwegian Model BIT and Arts 11–13 of the 2012 US Model BIT. 190 See Marco Fasciglione, ‘Corporate Social Responsibility and the Right to Employment of Persons with Disabilities’ in Della Fina and Cera (n 1) 171; Eric Boyd et al, ‘Corporate Social Responsibility in Global Supply Chains: A Procedural Justice Perspective’ (2007) 40 Long Range Planning 341.
bantekas, pennilas, and trömel
798
Work and Employment
4.10 Sub-paragraph 1(j) Apprenticeship programmes and other workplace-based trainings play a significant role in many countries as one of the avenues for young people into the labour market. Sub- paragraph 1(j) is an important reminder to states to ensure that existing mainstream programmes, often implemented as part of vocational training programmes, should be inclusive of young women and men with disabilities. Research done by the Institute on Employment and Disability of Cornell University shows that employers with an internship programme for persons with disabilities are six times more likely to have hired a person with a disability than those who did not have such a programme. The concerns expressed by some states and civil society in the negotiation process of the CRPD that these programmes should not lead to exploitation of persons with disabilities alerts us to be cautious and ensure that persons with disabilities participate only in those programmes where there is careful oversight by the public authorities.
4.11 Sub-paragraph 1(k) Sub-paragraph 1(k) provides specific guidance on what states should do for persons who acquire an impairment during the course of employment, following on from the pertinent reference in the chapeau of article 27. The reporting guidelines of the CRPD Committee191 refer specifically to people who have acquired impairments due to a work- related accident or injury. However, this paragraph and the reference in the chapeau do not restrict themselves to those who acquired an impairment due to a work-related accident, but focus generally on those that acquired an impairment while being in an employment relationship.192 Indeed, in many countries, there are schemes established by social security organizations in ensuring job retention and the return to work of people who acquire an impairment while covered by social security schemes in place. The International Social Security Association (ISSA) published in 2013 guidelines on return to work and reintegration.193 These guidelines provide very detailed policy guidance on what states can and should do in order to promote the return to work of people that acquired an impairment. These include the establishment of an adequate legal and policy framework, the involvement of employers, the need for early identification and intervention, individual case management and provisions of reasonable adjustment, among others. Depending on the type of job and the acquired impairment, the return to work process might require vocational rehabilitation, so that the person is able to continue doing their job, including through the provision of reasonable accommodation and occupational therapy. However, if the person is unable to continue doing the job previously performed, there might be a need to provide adequate training to learn a new skill or profession. As much as possible, this professional rehabilitation should be provided by mainstream
CRPD Committee Guidelines (n 109). In order to avoid confusion in terminology, we decided here to use ‘impairment’ when referring to the personal condition, as used in paragraph (e) of the CRPD’s preamble and its Art 1, diverting from the text used in Art 27 which refers to ‘acquire a disability.’ 193 ISSA, ‘Guidelines: Return to Work and Reintegration’, available at: . 191 192
bantekas, pennilas, and trömel
Article 27
799
training services. Specific attention should be given in this context to people with mental health conditions.
5. Paragraph 2 The wording is inspired by article 8 ICCPR and the ILO Forced Labour Convention No 29 of 1930. Article 2(1) of the 1930 Forced Labour Convention defines forced labour as: All work or service which is exacted from any person under the menace of any penalty and for which the said person has not offered himself voluntarily.
This definition of forced labour194 excludes military service, civic duties, work arising from lawful conviction properly supervised, labour as a result of natural calamities or other emergencies and other cases of minor communal services.195 All other forms of forced labour constitute penal offences under the 1930 ILO Convention196 and wide ratification of this instrument has rendered its prohibition a rule of customary international law. The severity of forced labour is reflected in a past report by the UN Working Group on Contemporary Forms of Slavery, which stated that slavery in all its forms and manifestations is a crime against humanity.197 This rather late addition to article 27 CRPD has not received much attention so far in the recommendations of the CRPD Committee. The only exceptions are found in the concluding observations to Mexico and China, the first including a combined reference to harassment and protection from forced labour and the second to slave labour.198 The fact that the CRPD refers to forced or compulsory labour has also resulted in the reference to the CRPD in the preamble of ILO Protocol of 2014 to the Forced Labour Convention 1930. This Optional Protocol is therefore a useful reference in terms of considering what actions states should undertake to protect persons with disabilities on an equal basis with others from forced or compulsory labour. Article 2 of the Optional Protocol requires: . . . (a) educating and informing people, especially those considered to be particularly vulnerable, in order to prevent their becoming victims of forced or compulsory labour; . . . (c) Undertaking efforts to ensure that: The coverage and enforcement of legislation relevant to the prevention of forced or compulsory labour, including labour law as appropriate, apply to all workers and all sectors of the economy; and Labour inspection services and other services responsible for the implementation of this legislation are strengthened . . .
The Committee has reflected on the issue of slave labour in its concluding observations on China regarding the abduction of persons with disabilities in Shanxi and Henan. Modern slavery includes a number of practices connected to labour, including forced labour through trafficking, particularly where force, fraud and coercion holds persons with 194 See Prabha Kotiswaran, Revisiting the Law and Governance of Trafficking, Forced Labor and Modern Slavery (CUP 2017). 195 196 1930 ILO Convention Art 2(2). ibid Art 25. 197 UN Doc E/CN4/Sub2/1997/13 (11 July 1997) para 80 and UN Doc E/CN4/Sub2/1999/17 (20 July 1999) para 103. 198 CRPD Committee, ‘Concluding Observations on Mexico’ (n 103) para 52; CRPD Committee, ‘Concluding Observations on China’ (n 40) paras 29–30.
bantekas, pennilas, and trömel
800
Work and Employment
disabilities under servitude.199 The Special Rapporteur on contemporary forms of slavery, including its causes and its consequences, includes in its mandate, inter alia, traditional slavery, debt bondage, serfdom, forced labour, children in slavery and slavery-like conditions, sexual slavery, forced and early marriages, and servile forms of marriage following the scope defined by the Human Rights Council.200 This special procedure has never considered the situation of persons with disabilities since its creation. Nevertheless, the report of the Special Rapporteur on trafficking in persons, especially women and children on her mission to the United States of America, briefly reflects on the situation in the country considering that forced labour and trafficking by family members to succeed in gaining disability benefits are issues to address when it comes to persons with disabilities.201
Human Trafficking Pro Bono Legal Center, ‘Trafficking of Persons with Disabilities’ (2016). Human Rights Council Res 6/14 (28 September 2007). 201 ‘Report of the Special Rapporteur on trafficking in persons, especially women and children on her mission to the United States of America’ UN Doc A/HRC/35/37/Add 2 (21 July 2017) para 20; see also Denise Brennan, Life Interrupted: Trafficking into Forced Labor in the United States (Duke University Press 2014). 199 200
bantekas, pennilas, and trömel
Article 28 Adequate Standard of Living and Social Protection . States Parties recognize the right of per1 sons with disabilities to an adequate standard of living for themselves and their families, including adequate food, clothing and housing, and to the continuous improvement of living conditions, and shall take appropriate steps to safeguard and promote the realization of this right without discrimination on the basis of disability. . States Parties recognize the right of per2 sons with disabilities to social protection and to the enjoyment of that right without discrimination on the basis of disability, and shall take appropriate steps to safeguard and promote the realization of this right, including measures: (a) To ensure equal access by persons with disabilities to clean water services, and to
ensure access to appropriate and affordable services, devices and other assistance for disability-related needs; (b) To ensure access by persons with disabilities, in particular women and girls with disabilities and older persons with disabilities, to social protection programmes and poverty reduction programmes; (c) To ensure access by persons with dis abilities and their families living in situations of poverty to assistance from the State with disability- related expenses, including adequate training, counselling, financial assistance and respite care; (d) To ensure access by persons with disabilities to public housing programmes; (e) To ensure equal access by persons with disabilities to retirement benefits and programmes.
1. Introduction 2. Background and Travaux Préparatoires 3. Paragraph 1 3.1 Adequate Standard of Living 3.2 Their Families 3.3 Adequate Food, Clothing, and Housing 3.4 Continuous Improvement of Living Conditions 3.5 Appropriate Steps 4. Paragraph 2 4.1 Social Protection 5. a. To ensure equal access by persons with disabilities to clean water . . . 5.1 Equal Access 5.2 Clean Water Services 5.3 Access to Appropriate and Affordable Services, Devices, and other Assistance for Disability-Related Needs 6. b. To ensure access . . . in particular women and girls with disabilities and older persons with disabilities, to social protection programmes . . . 6.1 Access 6.2 Women and Girls with Disabilities 6.3 Older Persons with Disabilities 6.4 Social Protection Programmes and Poverty Reduction Programmes
802 802 805 806 806 807 810 810 811 812 815 815 816 818 820 820 821 822 823
cremin
802
Adequate Standard of Living and Social Protection 7. c. To ensure access . . . to assistance from the State with disability-related expenses, including adequate training . . . 7.1 Situations of Poverty 7.2 Assistance from the State 7.3 Disability-Related Expenses 8. d. To ensure access by persons with disabilities to public housing programmes 9. e. To ensure equal access by persons with disabilities to retirement benefits and programmes
825 826 828 828 830 832
1. Introduction Article 28 of the CRPD addresses the rights that persons with disabilities have to an adequate standard of living and to social protection. The Universal Declaration of Human Rights1 and the International Covenant on Economic, Social and Cultural Rights2 both recognize the right to an adequate standard of living. Similarly, article 23 of the UDHR recognizes ‘the right to just and favourable remuneration ensuring for himself and his family an existence worthy of human dignity, and supplemented, if necessary, by other means of social protection’.3 Evidence indicates, however, that these rights have not been effectively implemented for persons with disabilities. The World Bank has found that: ‘Persons with disabilities are more likely to experience adverse socioeconomic outcomes than persons without disabilities, such as less education, poorer health outcomes, lower levels of employment, and higher poverty rates.’4 Article 28 aims to combat this injustice. Article 28 is one of the longer CRPD articles.5 It provides a good deal of guidance to states parties about the steps they should take to implement the rights that persons with disabilities have to an adequate standard of living and social protection. As Frédéric Mégret has pointed out, ‘[T]he [CRPD] arguably goes further than any international human rights instrument before it in spelling out in substantial detail exactly how states should go about ensuring the rights of persons with disabilities.’6 This is certainly true when one compares the level of detail in article 28 with the general statements provided by prior convention provisions on the rights to an adequate standard of living and social protection. However, even though the text of article 28 provides more contours for these rights, opacity still abounds.
2. Background and Travaux Préparatoires Article 28 builds on prior texts that addressed the topic of income and social security for persons with disabilities. At the end of the International Year of Disabled Persons, the United Nations General Assembly adopted the World Programme of Action Concerning See UNGA Res 217A (10 December 1948) Universal Declaration of Human Rights (UDHR) Art 25(1). 3 See Art 11(1) ICESCR. Art 23(3) UDHR. 4 The World Bank, ‘Disability Inclusion Overview’, available at: . 5 Art 28 has 208 words. The longest substantive article is art 4, ‘General obligations’, with 549 words; the shortest is art 17, ‘Protecting the integrity of the person’, with twenty-three words. Only twelve of the thirty- three substantive articles have more than 200 words. 6 Frédéric Mégret, ‘The Disabilities Convention: Human Rights of Persons with Disabilities or Disability Rights?’ (2008) 30 HRQ 494, 506. 1 2
cremin
Article 28
803
Disabled Persons. The World Programme encourages Member States to examine rights, including social security, ‘from the perspective of disabled persons’.7 Member states should also ‘ensure that disabled persons have equal opportunities to obtain all forms of income, maintenance thereof, and social security’.8 The World Programme directs Member states to ‘review’ their ‘social security, social insurance and other such systems . . . to make certain that adequate benefits and services for prevention, rehabilitation and the equalization of opportunities are provided for disabled persons and their families’.9 It also includes an anti-discrimination provision.10 To implement these and other provisions, the General Assembly proclaimed 1983–1992 the United Nations Decade of Disabled Persons.11 One of the outcomes of the United Nations Decade of Disabled Persons was the adoption of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities.12 The Standard Rules are not ‘legally binding’, but they ‘represent a strong moral and political commitment of Governments to take action to attain equalization of opportunities for persons with disabilities’.13 Rule 8 focuses on income maintenance and social security.14 Many of Rule 8’s elements are included in article 28 or were excluded after debate. For example, like paragraph 1 of Rule 8, paragraph 2(c) of article 28 emphasizes the importance of providing assistance with disability-related costs.15 Paragraph 2 of Rule 8 and paragraph 2(b) of article 28 both aim to ensure that persons with disabilities are not excluded from social security and anti-poverty programs.16 Both the Standard Rules and article 28 also recognize the impact that caregiving can have on family members.17 Much of Rule 8 is preoccupied with making sure that States provide the proper incentives for persons with disabilities to work. During negotiations, this topic was much debated. The Working Group text of subparagraph (c) ended by indicating that assistance with disability-related expenses ‘should not become a disincentive [for persons with disabilities] to develop themselves’.18 During the third session of the Ad Hoc Committee, for example, the ILO argued that ‘[S]ocial security provisions often work in the opposite direction to employment policies, reducing their effectiveness, because they constitute a disincentive to vocation rehabilitation, vocational training and work for persons with disabilities (called the Benefit Trap).’19 To address this, the ILO suggested adding a provision ‘to minimize the
7 ‘World Programme of Action Concerning Disabled Persons: Report of the Secretary-General Addendum’ UN Doc A/37/351/Add 1 (15 September 1982) para 111. 8 9 10 ibid para 117. ibid para 118. See ibid para 109. 11 See United Nations, ‘United Nations Decade of Disabled Persons 1983–1992’, available at: . 12 See UNGA, ‘Standard rules on the equalization of opportunities for persons with disabilities’ UNGA Res 48/96 (20 December 1993) [Standard Rules]. 13 United Nations, ‘The Standard Rules on the Equalization of Opportunities for Persons with Disabilities’, available at: . 14 15 See Standard Rules, Rule 8. cf Standard Rules, Rule 8(1) with Art 28(2)(c) CRPD. 16 cf Standard Rules, Rule 8(2) with Art 28(2)(b) CRPD. 17 cf Standard Rules, Rule 8(3) with Art 28(2)(c) CRPD. 18 UNGA, ‘Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities: Working Group’ UN Doc A/AC265/2004/WG 1 (27 January 2004) 30—note that, in the Working Group text, what became art 28 in the final text was art 23. 19 United Nations Enable, ‘Third Session, Comments, proposals and amendments submitted electronically’, available at: .
cremin
804
Adequate Standard of Living and Social Protection
disincentive effect of social security benefits on employment/self-employment’.20 The IDC strongly opposed this provision,21 however, and it was deleted during the seventh session. Articles 26 and 27 focus on rehabilitation and work, respectively, but the only remaining mention of ‘incentives’ in the CRPD involves promoting the employment of persons with disabilities by the private sector.22 Instead of focusing on creating incentives for persons with disabilities to work, the CRPD focuses on removing the structural and attitudinal barriers that prevent persons with disabilities from working. The Working Group text included a number of other provisions that were eventually eliminated. For example, draft subparagraph (b) required states parties ‘to take into account the needs and perspectives of persons with disabilities’ in social security programmes and poverty reduction strategies.23 This phrase was deleted during the sixth session, however, because input from persons with disabilities is already required by the general obligations set forth in article 4.24 During negotiations, the question was often raised whether these two rights— adequate standard of living and social protection—should be addressed in separate articles. Landmine Survivors Network, for example, noted that prior treaties addressed these two rights in separate articles.25 Liechtenstein was concerned that, based on its length, ‘[T]he right to social security seems to have more weight than the right to an adequate standard of living.’26 During the sixth session, ‘The Committee agreed to reflect further on this proposal.’27 Canada acknowledged that these two rights are ‘inter-related’, but worried that ‘[I]ncluding them as 2 paragraphs in the same article [] may perpetuate a negative assumption about persons with disabilities.’28 Similar arguments were raised during the seventh session, but the Chair ‘stated that none of these proposals seemed to have much support, and so the present structure would be kept’.29 As a result, the CRPD is the first time that an ‘international instrument [refers] to the right to social protection and links it to the right to an adequate standard of living . . .’.30 The order of article 28’s two rights was also the subject of much debate. The first paragraph of the Working Group draft text focused on ‘the right of all persons with disabilities
ibid. International Disability Caucus, ‘Chairman’s Text as Amended by the International Disability Caucus’ 58–59, available at: . 22 23 Art 27(1)(h) CRPD. Working Group draft text (n 18). 24 ‘Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its sixth session’ UN Doc A/60/266 (17 August 2005) para 118 (citing what would become Art 4(3) CRPD in the final text). 25 Third Session Comments (n 19) (cf International Covenant on Economic, Social and Cultural Rights, Arts 9 and 11). 26 UN Convention on the Rights of People with Disabilities Ad Hoc Committee, ‘Daily summary of discussion at the third session, 2 June 2004’ (United Nations Enable vol 4 No 7, 2 June 2004) 19, available at: . 27 Sixth Session Report (n 24) para 111. 28 United Nations Enable, ‘Sixth Session, Comments, proposals and amendments submitted electronically’, available at: . 29 UN Convention on the Rights of People with Disabilities Ad Hoc Committee, ‘Daily summary of discussion at the seventh session’, 26 January 2006’ (United Nations Enable vol 8 No 9, 26 January 2006) 17, available at: . 30 UNGA, ‘Report of the Special Rapporteur on the rights of persons with disabilities: note by the Secretary- General’ UN Doc A/70/297 (7 August 2015) para 19. 20 21
cremin
Article 28
805
to social security, including social insurance . . .’.31 The second paragraph set forth ‘the right of all persons with disabilities to an adequate standard of living for themselves and their families’.32 During the third session of the Ad Hoc Committee, New Zealand suggested reversing the order.33 The National Human Rights Institutions concurred, explaining that ‘[T]he right to an adequate standard of living is broader than the right to social security.’34 During the sixth session, ‘There was general agreement that the order of paragraphs 1 and 2 should be reversed.’35 The paragraphs were reversed during the seventh session of the Ad Hoc Committee.36 The Working Group text included two subparagraphs that were omitted from the final text of article 28.37 Subparagraph (e) would have ensured that persons with disabilities have access to ‘tax exemptions and tax benefits’. Some members of the Working Group thought that this provision was ‘too prescriptive’.38 The National Human Rights Institutions argued against this special treatment of persons with disabilities: ‘We do not think a blanket tax exemption is desirable. We believe that tax exemption should be linked to disability related expenses. This we believe would go a long way in recognizing that people with disabilities are equal citizens, with rights and responsibilities.’39 The European Disability Forum also criticized this provision as being evocative ‘of old times when disability was approached from a charitable point of view’.40 The tax provision was omitted from the final text. The Working Group text also included a Subparagraph (f ). Subparagraph (f ) would have ensured access to ‘life and health insurance without discrimination on the basis of disability’.41 Because ‘[I]n many countries[, insurance] is typically the domain of the private sector’, the Working Group questioned whether states parties could achieve this.42 The Ad Hoc Committee also noted that life insurance is ‘not looked on favourably’ in some states.43 This subparagraph was also omitted from the final text.
3. Paragraph 1 The first paragraph of article 28 is a complex sentence of over fifty words that focuses on the right to an adequate standard of living. It includes at least six key elements. First, it requires states parties to recognize the right that persons with disabilities have ‘to an adequate standard of living’. Second, it clarifies that, although this right belongs to people with disabilities, the beneficiaries of this right also include their families. Third, it lists three of the elements of an adequate standard of living: ‘adequate food, clothing, and housing’. Fourth, it includes another element of an adequate standard of living: ‘the continuous improvement of living conditions’. Fifth, it obligates states parties to ‘take appropriate steps to safeguard and promote the realization of th[e]right [to an adequate standard of living]’. Sixth, it obligates states parties to ensure that the appropriate steps be taken ‘without discrimination on the basis of disability’. The concept of ‘discrimination on the basis of disability’ is thoroughly analysed in the chapter on article 2. Below, the other five elements are discussed in turn. 32 Working Group draft text (n 18). ibid. 34 35 Third Session Comments (n 19). ibid. Sixth Session Report (n 24) para 111. 36 See ‘Report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its seventh session’ UN Doc A/AC265/2006/2 (Distr General 13 February 2006) Annex II (Working text). 37 38 39 Working Group draft text (n 18). ibid fn 105. Third Session Comments (n19). 40 41 42 ibid. Working Group draft text (n 18). ibid fn 106. 43 Sixth Session Report (n 24) para 127. 31 33
cremin
806
Adequate Standard of Living and Social Protection
3.1 Adequate Standard of Living Many persons with disabilities live in poverty.44 Poverty and disability are a feedback loop: poverty both results from and causes disability.45 The CRPD recognizes this problem and seeks to remedy it. The Preamble highlights ‘the fact that the majority of persons with disabilities live in conditions of poverty’ and recognizes ‘the critical need to address the negative impact of poverty on persons with disabilities’.46 The preamble also emphasizes that one of the primary purposes of the CRPD is to ‘redress[] the profound social disadvantage of persons with disabilities . . .’.47 Article 28 requires states parties to ‘recognize the right of persons with disabilities to an adequate standard of living’. This provision is not setting forth a new right. Instead, article 28 is making it clear that an existing right applies to persons with disabilities. The right to an adequate standard of living has been recognized in several other treaties and conventions. The UDHR, which was adopted in 1948, states that ‘Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family . . .’.48 The ICESCR, which was adopted in 1966, requires states parties to ‘recognize the right of everyone to an adequate standard of living for himself and his family, including adequate food, clothing and housing, and to the continuous improvement of living conditions’.49 States parties must provide the minimal elements of an adequate standard of living ‘even if their resources are scarce’.50
3.2 Their Families Families play a secondary role in the CRPD. The preamble emphasizes that ‘[T]he family is the natural and fundamental group unit of society and is entitled to protection by society and the State . . .’.51 However, families are important primarily because of the impact they have on the rights of persons with disabilities: ‘[P]ersons with disabilities and their family members should receive the necessary protection and assistance to enable families to contribute towards the full and equal enjoyment of the rights of persons with disabilities . . . ’.52 Kayess and French describe the nature of the relationship: [W]hen the CRPD refer[s] to the family, it implicitly positions the person with disability in an instrumental rather than dependent role, or alternatively it imposes obligations on States to assist families in their effort to realise the human rights of persons with disability—the family member with disability is the primary beneficiary.53
The CRPD requires states parties to provide benefits and services that reduce the potential tension between the needs of persons with disabilities and the needs of their families. The primary purpose of this assistance, however, is to help persons with disabilities vindicate 44 United Nations Enable, ‘Factsheet on Persons with Disabilities’, available at: . (‘The World Bank estimates that 20 per cent of the world’s poorest people have some kind of disability, and tend to be regarded in their own communities as the most disadvantaged.’). 45 See Sophie Mitra, Disability and Social Safety Nets in Developing Countries (Social Protection Discussion Paper Series No 0509, 2005) 11 (‘While disability can lead to poverty, poverty itself can be the cause of a disability.’). 46 47 48 CRPD Preamble (t). CRPD Preamble (y). Art 25(1) UDHR. 49 50 Art 11(1) ICESCR. Report of the Special Rapporteur (n 30) para 82. 51 52 CRPD Preamble (x). ibid. 53 Rosemary Kayess and Phillip French, ‘Out of Darkness into Light? Introducing the Convention on the Rights of Persons with Disabilities’ (2008) 8 HRLR 1 25.
cremin
Article 28
807
their rights. In this way, ‘[t]he CRPD privileges the rights of persons with disability over those of family members, and challenges the construction of persons with disability as passive participants in family life and as “burdens” on other family members’.54 Both implicitly and explicitly, the CRPD recognizes that families sometimes contribute to the problems faced by persons with disabilities. Article 8, for example, requires states parties ‘to adopt immediate, effective and appropriate measures . . . [t]o raise awareness throughout society, including at the family level, regarding persons with disabilities’.55 Similarly, article 16 highlights that families and caregivers are key points of intervention in preventing exploitation, violence and abuse of persons with disabilities.56 Article 23 requires states parties to take steps ‘to prevent concealment, abandonment, neglect and segregation of children with disabilities’.57 As discussed in more detail in the section on ‘disability-related expenses’ below, during the negotiations, states parties expressed varying views on whether families should be seen as the source of many of the problems faced by persons with disabilities or as a key part of the solution to those problems. Japan, for example, argued that all references to ‘family’ should be deleted from the CRPD because ‘families are often the cause of . . . isolation [for persons with disabilities].’58 In contrast, ‘Kenya pointed out that in most developing countries, social security is based on the family. . . .’.59 The CRPD also recognizes the right of persons with disabilities to form families through marriage and parenthood. Article 23 requires states parties to ‘take effective and appropriate measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others. . . .’.60 In addition to recognizing the rights of persons with disabilities to marry and to have children,61 the CRPD requires states parties to ‘render appropriate assistance to persons with disabilities in the performance of their child-rearing responsibilities’.62 When the CRPD refers to ‘families’, it is referring not only to the families that persons with disabilities are born into, but also the families that they create.
3.3 Adequate Food, Clothing, and Housing Article 28 specifies that an adequate standard of living includes ‘adequate food, clothing and housing’. This is not an exhaustive list. It is unclear what the other elements of an adequate standard of living are. While it is helpful to include examples, the danger is that states parties will focus exclusively on these three elements. During negotiations, Yemen expressed a concern that the list of elements ‘may be under-inclusive and that important aspects of protection and care, such as medicine and education, may be inadvertently excluded’.63 Yemen, therefore, suggested that ‘these items should be added to the list, or the list should be deleted altogether’.64 55 56 57 ibid 26. Art 8(1) CRPD. See ibid Art 16(2). ibid Art 23(3). UN Convention on the Rights of People with Disabilities Ad Hoc Committee, ‘Daily summary of discussion at the sixth session, 8 August 2005’ (United Nations Enable vol 7 No 6, 8 August 2005) 20, available at: . 59 60 Daily summary of discussion at the seventh session (n 29). Art 23(1) CRPD. 61 62 See ibid. ibid Art 23(2). 63 Daily summary of discussion at the seventh session (n 29). 64 ibid; see also Sixth Session Report (n 24), para 129 (‘[S]ome delegations suggested that the “listing” of elements of an adequate standard of living was not necessarily helpful, and could thus be deleted. Other delegations, however, supported such a list.’). 54 58
cremin
808
Adequate Standard of Living and Social Protection
The parallel provision in the UDHR is different in several ways. First, the UDHR more explicitly explains that an adequate standard of living is necessary ‘for . . . health and well-being’.65 Second, the UDHR’s list of the elements of an adequate standard of living includes more examples, including ‘medical care and necessary social services’.66 The CRPD addresses medical care in article 25 and social services in paragraph 2 of article 28. Article 28 does not directly explain the purpose of an adequate standard of living. The use of the word ‘adequate’ to modify ‘food, clothing and housing’, however, gives a sense that the purpose is to make sure that life will be maintained, rather than that life will flourish. During the negotiations over this provision, Jordan lamented that ‘[T]he word “adequate” is not, in fact, adequate and stronger language should be used’.67 The non-governmental organization Bizchut also expressed concern that the provision for an adequate standard of living focused on ‘survival’ instead of human thriving.68 In common language, ‘adequate’ conveys the sense that only a bare minimum is required.69 It evokes an objective standard. Adequate food would seem to be the amount of food necessary for sustenance. The only other mention of ‘food’ in the CRPD is in article 25, which focuses on health. Article 25 requires states parties to ‘[p]revent discriminatory denial of . . . food and fluids on the basis of disability’.70 Sustainable Development Goal 2 focuses on ending hunger and improving nutrition.71 The Committee on Economic, Social and Cultural Rights has counselled against such a narrow interpretation of the right to adequate food: ‘The right to adequate food shall . . . not be interpreted in a narrow or restrictive sense which equates it with a minimum package of calories, proteins and other specific nutrients.’72 Adequacy is also dependent on the context: ‘The precise meaning of “adequacy” is to a large extent determined by prevailing social, economic, cultural, climatic, ecological and other conditions . . . ’.73 However, the ‘core content of the right to adequate food implies’: The availability of food in a quantity and quality sufficient to satisfy the dietary needs of individuals, free from adverse substances, and acceptable within a given culture; [and] The accessibility of such food in ways that are sustainable and that do not interfere with the enjoyment of other human rights.74
Adequate clothing provides coverage of the body that is appropriate given the state party’s weather, cultural norms and religious traditions.75 This is the only mention of clothing in the CRPD. There has not been a great deal of analysis of the contours of the right to 66 Art 25(1) UDHR. ibid. Daily summary of discussion at the seventh session (n 29). 68 Third Session Comments (n 19). 69 According to the Merriam-Webster dictionary, ‘adequate’ means: ‘sufficient for a specific need or requirement’ or ‘lawfully and reasonably sufficient’, available at: . 70 Art 25(f ) CRPD. 71 UN, Sustainable Development Goals, ‘Goal 2: End hunger, achieve food security and improved nutrition and promote sustainable agriculture’, available at: . 72 CESCR, ‘General Comment No 12: The right to adequate food (Art 11)’ UN Doc E/C 12/1999/5 (12 May 1999) para 6. 73 74 ibid para 7. ibid para 8. 75 See Icelandic Human Rights Centre, ‘The Right to an Adequate Standard of Living’, available at: . (‘The right to adequate clothing is more than a physical necessity. It has cultural and religious elements as clothing is often a visible expression of a person’s culture, customs, religion, belief or political opinion.’) 65 67
cremin
Article 28
809
adequate clothing.76 Adequate clothing would seem to be the required minimum to allow persons with disabilities to maintain their health and avoid abject or absolute poverty. Some people with disabilities have clothing-related needs that other people do not.77 The CESCR has also counselled against a narrow interpretation of the right to housing. The right to housing does not merely guarantee that a person has ‘a roof over one’s head’; instead, ‘it should be seen as the right to live somewhere in security, peace and dignity’.78 Housing is not adequate unless it includes: ‘ “adequate privacy, adequate space, adequate security, adequate lighting and ventilation, adequate basic infrastructure and adequate location with regard to work and basic facilities—all at a reasonable cost” ’.79 As with clothing, housing that might be adequate for most people, might not be adequate for a person with a disability. To be ‘adequate’, does housing have to be accessible for the relevant person with a disability? Article 28 alone is not clear on this point. However, when read within the context of the entire CRPD, it would seem that housing that is inaccessible is inadequate. For example, with the goal of fostering independent living and equal participation in community life, article 8 requires states parties to take appropriate measures to identify and eliminate ‘obstacles and barriers to accessibility’ in housing.80 Similarly, article 19 requires states parties to ‘take effective and appropriate measures to facilitate full enjoyment by persons with disabilities’ to live independently in the community.81 Moreover, CESCR General Comment 5 specifically states that ‘[T]he right to adequate housing includes the right to accessible housing for persons with disabilities.’82 Social security programs must provide benefits that are ‘adequate in amount and duration in order that everyone may realize his or her rights to family protection and assistance, an adequate standard of living and adequate access to health care . . . ’.83 The List of Issues84 and Concluding Observations85 of the Committee on the Rights of Persons with Disabilities (CRPD Committee) frequently focus on states parties’ obligation to provide a level of benefits that is sufficient for persons with disabilities to maintain an adequate 76 ibid (‘Because of the variations in cultural clothing needs and wants, the right to adequate clothing is probably the least elaborated of all the components of an adequate standard of living.’). 77 CESCR, ‘General Comment No 5: Persons with disabilities’ UN Doc E/1995/22 (9 December 1994) para 33 (‘The right to adequate clothing also assumes a special significance in the context of persons with disabilities who have particular clothing needs, so as to enable them to function fully and effectively in society. Wherever possible, appropriate personal assistance should also be provided in this connection.’). 78 CESCR, ‘General Comment No 4: The right to adequate housing (Art 11 (1))’ UN Doc E/1992/23 (13 December 1991) para 7. 79 ibid (quoting Commission on Human Settlements and the Global Strategy for Shelter to the Year 2000). 80 Art 8(1)(a) CRPD. 81 ibid Art 19; see also ibid Art 19(b)(‘Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.’). 82 CESCR ‘General Comment No 5’ (n 77) (emphasis added), citing CESCR ‘General Comment No 4’ (n 78) para 8. 83 CESCR, ‘General Comment No 19: The Right to Social Security (Art 9)’ UN Doc E/C 12/GC/19 (4 February 2008) para 22. 84 See eg CRPD Committee, ‘List of issues in relation to the initial report of Thailand’ UN Doc CRPD/ C/THA/Q/1 (2 October 2015) para 28 (‘Please explain the measures being taken to ensure that the monthly disability allowance . . . guarantees an adequate standard of living . . . .’). 85 See eg CRPD Committee, ‘Concluding observations on the initial report of Ukraine’ 2 October 2015 UN Doc CRPD/C/UKR/CO/1 (2 October 2015) para 53 (‘The Committee calls upon the state party to review its budgetary allocations and increase the disability pension in order to provide persons with disabilities with adequate standard of living.’).
cremin
810
Adequate Standard of Living and Social Protection
standard of living. A standard of living is not ‘adequate’ unless it enables persons with disabilities to ‘afford the goods and services they require to realize their Covenant rights’.86
3.4 Continuous Improvement of Living Conditions As noted above, paragraph 1 is complex and long. It incorporates a concept, ‘the continuous improvement of living conditions’, that seems at first to potentially be a separate right. However, given the overall structure of this paragraph as well as the usage of this same phrase in article 11 of the ICESCR, it is clear that ‘the continuous improvement of living conditions’ is an element of the right to an adequate standard of living.87 Unlike adequate food, clothing, and housing, which prevent a person from falling into absolute or abject poverty, the continuous improvement of living conditions addresses relative poverty. If a state party’s economy is improving, one would expect that, on average, the standard of living of its average citizen is also improving. If the poorest members of that society continue to have only enough food for sustenance and enough clothing to provide culturally appropriate body coverage, then their standard of living is, relative to their fellow citizens, getting worse. This provision requires states parties to address relative poverty. It can be captured, for example, by the question that the Danish Institute for Human Rights calls the ‘gold indicator for the right to adequate standard of living and social protection’: ‘During the last three years, have there been periods when for economic reasons you have been substantially prevented from living what you think is a normal life?’88 ‘A normal life’ is a moving target. What constitutes an adequate standard of living for persons with disabilities today will not constitute an adequate standard of living for persons with disabilities in fifty years. Article 28 envisions and requires progress.
3.5 Appropriate Steps States parties are required to take ‘appropriate steps to safeguard and promote the realization’ of the right to an adequate standard of living. This raises the question: What are ‘appropriate steps’? One way to answer this question is to compare ‘appropriate steps’ to parallel requirements set forth in other articles. Various articles provide details about how states parties are supposed to implement the rights of persons with disabilities.89 Throughout the CRPD, different levels of action are required. Some articles lay out detailed requirements. Article 16, for example, specifies that states parties must ‘take all appropriate legislative, administrative, social, educational and other measures to protect persons with disabilities, both within and outside the home, from all forms of exploitation, violence and abuse, including their gender-based aspects’.90 Similarly, article 8 requires states parties ‘to adopt immediate, effective and appropriate measures . . .’ to raise awareness.91
87 CESCR, ‘General Comment No 19’ (n 83) para 22. See Art 28(1) CRPD. The Danish Institute for Human Rights, ‘Decision on Gold Indicator for the Right to Adequate Standard of Living and Social Protection—Article 28’ (13 April 2015), available at: . 89 Mégret (n 6) 506 (‘[T]he [CRPD] arguably goes further than any international human rights instrument before it in spelling out in substantial detail exactly how states should go about ensuring the rights of persons with disabilities.’). 90 91 Art 16(1) CRPD (emphasis added). ibid Art 8(1) (emphasis added). 86 88
cremin
Article 28
811
In numerous other articles, states parties are required to take ‘all appropriate steps’92 or ‘all appropriate measures’.93 Some articles require that the appropriate measures also be ‘effective’.94 The requirement in paragraph 1 of article 28 appears to be weaker than many other provisions because ‘appropriate steps’ is not amplified by ‘all’, ‘effective’, or both of these words.95 Only one other article uses the phrase ‘appropriate steps’ without amplification.96 However, a close textual analysis of ‘appropriate steps’ and parallel provisions in other articles tells only part of the story. The phrase ‘appropriate steps’ must also be read in light of the CRPD’s General Obligations. With regard to economic rights like the right to an adequate standard of living, ‘[E]ach state party undertakes to take measures to the maximum of its available resources and, where needed, within the framework of international cooperation, with a view to achieving progressively the full realization of these rights . . .’.97 Human rights law also offers useful guidance on the meaning of the words ‘steps’ and ‘appropriate’. The CESCR, for example, has analysed the phrase ‘to take steps’ as it is used in article 2(1) of the ICESCR. The CESCR concludes that this phrase should be understood to require states parties to take ‘steps’ toward the relevant goal ‘within a reasonably short time after the Covenant’s entry into force’.98 The CESCR emphasizes that those ‘steps’ must be ‘deliberate, concrete and targeted as clearly as possible towards meeting the obligations recognized in the Covenant’.99 The CESCR also provides guidance on the meaning of the term ‘appropriate’ in the same ICESCR article. The CESCR explains that ‘appropriate’ measures might ‘include, but are not limited to, administrative, financial, education and social measures’100 as well as ‘legislation’ and ‘judicial remedies’.101 The CESCR suggests that states parties’ reports should explain both ‘the measures that have been taken’ and ‘the basis on which [those measures] are considered to be the most “appropriate” under the circumstances’.102 Reports should contain this information, because the CESCR makes ‘the ultimate determination as to whether all appropriate measures have been taken’ to comply with the IESCR.103 Similarly, the CRPD Committee is the final arbiter on whether a state party has taken ‘appropriate steps to safeguard and promote the realization’ of the right to an adequate standard of living for persons with disabilities.
4. Paragraph 2 Paragraph 2 focuses on social protection. It has four main parts: 1) States parties recognize that persons with disabilities have the right to social protection; 2) Persons with disabilities have the right to enjoy social protection without discrimination on the basis of disability; 3) States parties are required to take appropriate steps to safeguard and promote the realization of this right; and 4) States parties are required to take certain measures. 93 ibid Arts 5(3), 30(3). ibid, Arts 4(1)(b), 4(1)(e), 6(2), 16(2), 16(4), 21; 25, 30(1). 95 ibid Arts 19, 23(1), 32(1). See ibid Art 12(5). 96 See ibid Art 27(1): four articles use the term ‘appropriate measures’ without amplification or clarification—see ibid Arts 9(1), 9(2), 12(3), 24(3), 30(2), 30(5). 97 ibid Art 4(2). 98 CESCR, ‘General Comment No. 3: The Nature of States Parties’ Obligations (Art 2, Para 1)’ UN Doc E/1991/23 (14 December 1990) para 2. 99 100 101 102 103 ibid. ibid para 7. ibid para 5. ibid para 4. ibid. 92 94
cremin
812
Adequate Standard of Living and Social Protection
Some of the key phrases in paragraph 2 are repeated from paragraph 1;104 these phrases will not be re-analysed in this section. The concept of social protection is discussed before analysing, individually, examples of the measures that states parties are required to take.
4.1 Social Protection During the negotiations leading to the adoption of the CRPD, there was debate about whether to use ‘social protection’ or some other term. At first, the focus was on ‘social security.’105 Article 9 ICESCR recognizes ‘the right of everyone to social security, including social insurance’.106 The CERD,107 CEDAW,108 CRC,109 and the International Convention for the Protection of Migrant Workers and Their Families110 all invoke the right to social security. Some states objected to the term social security, however, because social security systems are generally insurance systems for workers.111 For example, to the extent that the Social Security (Minimum Standards) Convention discusses ‘handicapped persons’, it focuses exclusively on ensuring that they are provided with vocational rehabilitation so that they can enter or re-enter the workforce.112 In light of the high unemployment rates of persons with disabilities, focusing on social security alone would be problematic.113 The UDHR states that ‘[e]veryone, as a member of society, has the right to social security. . . .’.114 The UDHR also mentions ‘social protection’, but it raises it in an article that focuses primarily on work.115 Those who work have ‘the right to just and favourable remuneration ensuring for himself and his family an existence worthy of human dignity, and supplemented, if necessary, by other means of social protection’.116 Article 25 of the UDHR focuses primarily on ‘the right to a standard of living adequate for . . . health and well-being’.117 But it also discusses ‘the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond . . . control.’118 Although the concept of ‘social protection’ is implicit in this provision, article 25 of the UDHR uses the term ‘social protection’ only in relation to children.119 The focus of that provision is preventing discrimination against children who are born ‘out of wedlock’.120 Similarly, article 10 ICESCR focuses on states parties’ duty to provide ‘special protection’ and ‘special measures of protection’ to mothers and children or young people, respectively.121 The Committee ‘discussed options to replace or complement “social security” in order to find a broader phrase to encapsulate the assistance provided by a state . . . ’.122 Options 104 cf Art 28(1) (‘without discrimination on the basis of disability’ and ‘appropriate steps’) with Art 28(2) (‘without discrimination on the basis of disability’ and ‘appropriate steps’). 105 106 See Working Group draft text (n 18). Art 9 ICESCR. 107 Art 5(e)(iv) CERD (‘The right to public health, medical care, social security and social services’). 108 109 Art 11(1)(e) CEDAW. Art 26(1) CRC. 110 Art 27(1) International Convention for the Protection of Migrant Workers and Their Families. 111 See eg Daily summary of discussion at the third session (n 26) (Jamaica objecting that ‘[S]ocial security is usually based on contributions and social assistance is not’). 112 ILO Social Security (Minimum Standards) Convention’ [1952] (No 102) Art 35. 113 Daily summary of discussion at the seventh session (n 29) (Chair noting that ‘ “Social security” may be too narrow as it would apply only to the rights of working [persons with disabilities]’). 114 115 116 117 Art 22 UDHR. ibid Art 23. ibid Art 23(3). ibid Art 25(1). 118 ibid. 119 ibid Art 25(2) (‘Motherhood and childhood are entitled to special care and assistance. All children, whether born in or out of wedlock, shall enjoy the same social protection.’). 120 121 122 ibid. Art 10(2)–(3) ICESCR. Sixth Session Report (n 24) para 112.
cremin
Article 28
813
considered ‘included “social insurance” . . . , “social assistance”, “social support”, “social safety nets” and “social protection” ’.123 During the seventh session, the Committee settled on social protection ‘on the understanding that it has a broad interpretation . . .’.124 The Chair recommended using ‘social protection’ in part because the term had ‘been defined previously in the report of the UN Secretary-General to the Commission for Social Development and is also used in articles 23 and 25 of the Universal Declaration of Human Rights’.125 During his closing remarks for the seventh session, the Chair summarized the debate and its resolution: [T]here was a divergence in the Committee on the use of the term ‘social protection’ as opposed to ‘social security’. Most of those delegations that preferred ‘social security’, however, did so because they viewed it as a wider concept than ‘social protection’. There seemed to be general agreement that we should use the widest term. Included in the revised text is a note that cites a general understanding reached in the UN context that ‘social protection’ is actually the broader term. On that understanding there should not be a need to revisit this issue.126
The exact meaning of the term ‘social protection’ is elusive.127 Definitions of social protection generally ‘address protection against vulnerability, risk and unacceptable levels of deprivation through responses which are both formal and informal in nature’.128 Norton et al have suggested the following definition: ‘Social protection refers to the public actions taken in response to levels of vulnerability, risk and deprivation which are deemed socially unacceptable within a given polity or society.’129 The Special Rapporteur on the Rights of Persons with Disabilities, Catalina Devandas-Aguilar, has noted that ‘[T]here is no internationally agreed definition of social protection,’ but that [T]he term is most commonly used to refer to a variety of public and private interventions aimed at securing the well-being of a person in the event of social risk and need, such as (a) lack of work-related income, (b) unaffordable access to health care and (c) insufficient family and child support.130
The Special Rapporteur highlighted the link between social protection and ‘the ultimate goal of achieving social inclusion and social citizenship’.131 The World Bank’s definition of ‘social protection’ focuses on ‘measures to improve or protect human capital’.132 Other ibid. Seventh Session Report (n 36), Annex II, International Convention on the Rights of Persons, with Disabilities, Working text, 6 (citing the report of the Secretary-General to the Commission for Social Development at its thirty-ninth session, UN Doc E/CN 5/2001/2 (2001). 125 Daily summary of discussion at the seventh session (n 29). 126 United Nations Enable, ‘Chair’s Closing Remarks (Seventh Session)’, available at: . 127 See Michael Palmer, ‘Social Protection and Disability: A Call for Action’ (2013) 41 Oxford Development Studies 139–54, 139 (‘the term social protection has a wide range of meanings and applications in various contexts’). 128 ibid 141 (citing Norton, Conway, and Foster, ‘Social Protection: Defining the Field of Action and Policy’ [2002] 20 Development Policy Review 541–67). 129 Norton (n 128) 543. 130 Report of the Special Rapporteur (n 30), para 5 (citing CESCR, ‘General Comment No 19’ (n 83) para 2). 131 ibid (citing Report of the Special Rapporteur on extreme poverty and human rights, UN Doc A/69/297 (11 August 2014) para 21). 132 The World Bank, ‘Disability & Development: Social Protection (Article 28)’, available at: . 123 124
cremin
814
Adequate Standard of Living and Social Protection
CRPD provisions also relate to social protection and the promotion of human capital.133 The CRPD is generally focused on ‘redressing the profound social disadvantage of persons with disabilities and promot[ing] their participation in the civil, political, economic, social and cultural spheres with equal opportunities . . .’.134 The use of the word ‘protection’ raises the question of whether this concept is paternalistic. Do persons with disabilities need to be ‘protected’? Are they similar in some respect to the children who receive ‘social protection’ under article 25 of the UDHR? That would seem to be contrary to the general principles135 and purpose136 of the CRPD. Unlike children, persons with disabilities have ‘autonomy and independence, including the freedom to make their own choices’.137 Unlike children, persons with disabilities are not inherently vulnerable. The potential vulnerability of persons with disabilities arises instead from the intersection of their impairments and the ‘various barriers [that] may hinder their full and effective participation in society on an equal basis with others’.138 Palmer has highlighted this potential conundrum: While surprisingly little is written on the issue of social security in the disability studies literature, it is conceivable that policies of social assistance could be seen as running counter to the disability rights movement, by perpetuating a charity-based model of disability in which [persons with disabilities] are viewed as passive recipients of welfare. It is not clear that social protection, which identifies the broad development of social assistance policies as a means of promoting economic security, equality of opportunity and social cohesion, sits easily with a movement for which measures that address discrimination and prejudice are a central goal.139
Ultimately, Palmer concludes that ‘There is . . . significant basis in the Convention to support the idea that social protection is consistent with a rights-based approach to disability.’140 Charity is voluntary and dependent on the goodwill of people or the state; social protection is a right.141 Palmer reaches this conclusion in part based on the specific ‘measures’ that are set forth in article 28(2) and are discussed in detail below. The CRPD Committee has specifically criticized social protection schemes, such as those that rely on ‘discounts and vouchers’, ‘which increase[] stigmatization and harmful stereotyping of persons with disabilities as a group that lacks autonomy and is dependent on social welfare’.142 133 Report of the Special Rapporteur (n 30) para 21 (‘social protection also resonates in other provisions of the Convention, including in relation to the right to live independently and be included in the community (Art 19), respect for home and the family (Art 23), education (Art 24), health (Art 25), habilitation and rehabilitation (Art 26) and work and employment (Art 27). Importantly, social protection interventions should be measured against the Convention’s principles of non-discrimination, participation and inclusion, equal opportunities, accessibility, and equality between men and women (Art 3)’). 134 135 CRPD Preamble (y). ibid Art 3. 136 ibid Art 1; see Nicholson & Ors v Knaggs & Ors [2009] VSC 64 [13] (‘The CRPD marks a paradigm shift in approaches to persons with disabilities. It reflects a movement from treating persons with disabilities as objects of social protection towards treating them as subjects with rights, who are capable of claiming and exercising those rights and making decisions based on free and informed consent as active members of society.’). 137 CRPD Preamble (n). See also ibid Art 3(a) (noting that one of the general principles is ‘Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons’). 138 139 140 ibid Art 1; see also ibid Preamble (e). Palmer (n 127) 146. ibid. 141 ibid 151. 142 CRPD Committee, ‘Concluding observations on the initial report of Lithuania’, UN Doc CRPD/C/ LTU/CO/1 (10 May 2016) para 53(b).
cremin
Article 28
815
Moreover, social protection is increasingly seen as a universal right, not limited to children, persons with disabilities, older persons, and other particularly ‘vulnerable’ groups. With the 2012 adoption of the ILO’s Social Protection Floors Recommendation, ‘[T]he world has taken a significant step forward in the realization of the human right to social security’.143 One of the ‘principles’ of the Social Protection Floors Recommendation is ‘universality of protection’.144 The goal of social protection floors is to ‘ensure effective access to essential health care and basic income security at a level that allows people to live in dignity throughout the life cycle’.145 Sustainable Development Goal 1 is to ‘[e]nd poverty in all its forms everywhere’.146 The targets for this goal call on states to ‘[i]mplement nationally appropriate social protection systems and measures for all, including floors . . .’.147 In its Concluding Observations on numerous states parties’ reports, the CRPD Committee has emphasized the link between article 28 and Sustainable Development Goal 1.148 The CRPD Committee has specifically recommended that states parties ‘identify a social protection floor that covers the minimum content of the right to an adequate standard of living on an equal basis with others. . . .’.149
5. a. To ensure equal access by persons with disabilities to clean water . . . Subparagraph (a) covers two main topics: equal access to clean water services and access to appropriate and affordable services, devices, and other assistance for disability-related needs. This is an odd pairing. Below, the term ‘equal access’ is examined before addressing the two main topics of this subparagraph.
5.1 Equal Access The word ‘access’ appears frequently in the CRPD, thirty-eight times in all. Access is directly modified by ‘equal’ only four times, including twice in article 28. States parties are required to provide persons with disabilities with equal access to ‘financial credit’,150 143 ILO, World Social Protection Report 2014–2015: Building Economic Recovery, Inclusive Development and Social Justice (3 June 2014) 5. 144 ILO, R202—Social Protection Floors Recommendation (2012) (No 202) para 3(a), available at: . 145 World Social Protection Report (n 143) 6 (Box 1.1). 146 UN, Sustainable Development Goals, ‘Goal 1: End poverty in all its forms everywhere’, available at: . 147 UN, Sustainable Development Goals, ‘Goal 1 targets’, available at: . 148 See CRPD Committee, ‘Concluding observations on the initial report of Bolivia’ UN Doc CRPD/C/ BOL/CO/1 (4 November 2016) para 64; CRPD Committee, ‘Concluding observations on the initial report of Guatemala’ UN Doc CRPD/C/GTM/CO/1 (29 September 2016) para 66; CRPD Committee, ‘Concluding observations on the initial report of Uruguay’ UN Doc CRPD/C/URY/CO (31 August 2016) para 60; CRPD Committee, ‘Concluding observations: Lithuania’ (n 142) para 56. 149 CRPD Committee, ‘Concluding observations on the initial report of Gabon’ UN Doc CRPD/C/GAB/ CO/1 (2 October 2015) para 61; see also CRPD Committee, ‘Concluding observations on the initial report of the European Union’ UN Doc CRPD/C/EU/CO/1 (2 October 2015) para 67 (recommending that that the European Union ‘set . . . a social protection floor that respects the core content of the right to an adequate standard of living and to social protection’). 150 Art 12(5) CRPD.
cremin
816
Adequate Standard of Living and Social Protection
‘to clean water services’,151 ‘to retirement benefits and programmes’,152 and, for children with disabilities, ‘to participation in play, recreation and leisure and sporting activities’.153 Access is modified by the term ‘on an equal basis with others’ an additional four times. States parties are required to provide persons with disabilities with access, on an equal basis with others, to ‘the physical environment, to transportation, to information and communications’,154 justice,155 ‘an inclusive, quality and free primary education and secondary education . . . in the communities in which they live’,156 and ‘general tertiary education, vocational training, adult education and lifelong learning’.157 However, the vast majority of the times that the CRPD requires access, that access does not apparently have to be ‘equal’ or ‘on an equal basis with others’. Several of these instances appear in article 28. For example, in this subparagraph, states parties are required ‘to ensure access to appropriate and affordable services, devices and other assistance for disability-related needs’.158 This access is not required to be ‘equal’ or ‘on an equal basis with others’, because persons with disabilities are the only people who require ‘assistance for disability-related needs’. So there is no comparison group. There are other instances in the CRPD where the lack of a comparison group explains why the word ‘access’ is not required to be ‘equal’.159 However, as is discussed later in this chapter, there are other examples, including in two in article 28 alone, where it is not clear why states parties are required to provide persons with disabilities with mere ‘access’, as opposed to ‘equal access’ to a benefit.
5.2 Clean Water Services States parties are required to provide persons with disabilities with equal access to clean water services. Clean water services might seem to fit better in paragraph 1 of this article, which addresses basic necessities of life such as adequate food, clothing and housing.160 In fact, the Reporting Guidelines of the CRPD Committee include ‘clean water’ within the same inquiry as ‘adequate food, clothing and housing’.161 The Working Group text included ‘access to clean water’ in the adequate standard of living provision.162 The inclusion of water was controversial from the start, however, and ‘[s]ome members of the Working Group considered that it should be deleted on the grounds that it was not a right guaranteed under the International Covenant on Economic, Social and Cultural Rights’.163 This is a too narrow reading of article 11 of the ICESCR. The ICESCR lists ‘food, clothing and housing’ as being some of the elements included in an adequate standard of living, but that list is not exhaustive.164 The CESCR has repeatedly referred to ‘[t]he 152 153 ibid Art 28(2)(a) ibid Art 28(2)(e). ibid Art 30(5)(d). 155 156 157 ibid Art 9(1). ibid Art 13(1). ibid Art 24(2)(b). Art 24(5). 158 ibid Αrt 28(2)(a). 159 See eg ibid Αrt 12(3) (providing persons with disabilities with access ‘to the support they may require in exercising their legal capacity’); Αrt 19(b) (‘Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance . . .’); 20(b) (‘[f ]acilitating access by persons with disabilities to quality mobility aids, devices, assistive technologies and forms of live assistance and intermediaries’). 160 ibid Αrt 28(1). 161 CRPD Committee, ‘Guidelines on treaty-specific document to be submitted by states parties under article 35, paragraph 1, of the Convention on the Rights of Persons with Disabilities’ UN Doc CRPD/C/2/3 (18 November 2009) 16. 162 163 164 Working Group draft text (n 18). ibid fn 107. Αrt 11 ICESCR. 151 154
cremin
Article 28
817
human right to water’.165 The CESCR has also explained that ‘[W]ater clearly falls within the category of guarantees essential for securing an adequate standard of living, particularly since it is one of the most fundamental conditions for survival’.166 As a result, states parties should ‘adopt relatively low-cost targeted water programmes to protect vulnerable and marginalized groups’, including people with disabilities.167 This debate continued throughout the negotiations. During the sixth session, the EU suggested deleting ‘access to clean water’ from the list of food, clothing, and housing, but adding it as a separate sentence focusing on ‘equal access to clean water’.168 Canada, during the seventh session, suggested focusing on equal access to ‘safe drinking water’.169 The Chair noted that the term ‘clean water’ is consistent with the CEDAW, but that perhaps this provision should be moved from paragraph 1 to paragraph 2.170 In article 14 of the CEDAW, water is addressed in the context of rural development and preventing discrimination against women who live in rural areas. States parties are required to ensure women living in rural areas have the ‘right . . . [t]o enjoy adequate living conditions, particularly in relation to housing, sanitation, electricity and water supply, transport and communications’.171 CEDAW General Recommendation No 24 emphasizes the connection between water and ‘the prevention of disease and the promotion of good health care’.172 The CRC includes water as one of the elements of ‘the right of the child to the enjoyment of the highest attainable standard of health’.173 States parties are required to ‘take appropriate measures . . . [t]o combat disease and malnutrition, including within the framework of primary health care, through, inter alia, the application of readily available technology and through the provision of adequate nutritious foods and clean drinking- water . . .’.174 The CESCR has also emphasized that water is ‘inextricably related to the right to the highest attainable standard of health’.175 One core obligation of state parties is ‘[t]o take measures to prevent, treat and control diseases linked to water, in particular ensuring access to adequate sanitation’.176 Sustainable Development Goal 6 aims to ‘[e]nsure access to water and sanitation for all’.177 The explanation for this goal emphasizes that ‘[E]very year millions of people, most of them children, die from diseases associated with inadequate water supply, sanitation and hygiene.’178 Article 28 builds on the connection between water and health. Some Working Group members argued that ‘access to clean water’ should be included because it is ‘critical to the treatment and prevention of disabilities’.179 During the eighth session, the water 165 See CESCR, ‘General Comment No 15: The right to water (Arts 11 and 12)’ UN Doc E/C.12/2002/11 (20 January 2003) paras 2–3; but see Doug Donoho, ‘Some Critical Thinking About a Human Right to Water’ [Fall 2012] 19 ILSA J Int’l & Comp L 91, 98 (noting that these treaties ‘provide only limited support for the claim that water is a universal individual right’). 166 167 168 ibid para 3. ibid para 37(h). Sixth Session Comments (n 28). 169 170 Daily summary of discussion at the seventh session (n 29). ibid. 171 Art 14(2)(h) CEDAW. 172 CEDAW, ‘General Recommendation No 24: Article 12 of the Convention (Women and Health) Adopted at the Twentieth Session of the Committee on the Elimination of Discrimination against Women, in 1999’ (contained in UN Doc A/54/38/Rev 1 (1 July 1999) chap I) para 28. 173 174 Art 24(1) CRC. Art 24(2)(c) CRC. 175 176 CESCR, ‘General Comment No 15’ (n 165) para 3. ibid para 37(i). 177 UN, Sustainable Development Goals, ‘Goal 6: Ensure access to water and sanitation for all’, available at: http://www.un.org/sustainabledevelopment/water-and-sanitation/. 178 179 ibid. Working Group draft text (n 18) fn 107.
cremin
818
Adequate Standard of Living and Social Protection
provision was removed from the adequate standard of living provision and added to this subparagraph.180 The right to water was not explicitly included in article 25, which focuses on health, but, as a compromise, access to clean water services was included instead in paragraph 2 of article 28.181
5.3 Access to Appropriate and Affordable Services, Devices, and other Assistance for Disability-Related Needs Social protection for persons with disabilities is complicated by the barriers they face. Structural and attitudinal barriers limit the ability of persons with disabilities to: 1) earn income; and 2) convert their income to the goods, services, and leisure that they desire. Amartya Sen has described these limitations as, respectively, the ‘earning handicap’ and ‘conversion handicap’: ‘For the same reason for which disability makes it harder to earn an income, disability also makes it harder to convert income into the freedom to live well.’182 Numerous CRPD provisions address the ‘earning handicap’.183 The ‘conversion handicap’ is often overlooked, but some CRPD provisions specifically target it. For example, article 30 requires states parties to take a series of measures ‘to enable[e]persons with disabilities to participate on an equal basis with others in recreational, leisure and sporting activities’.184 Other provisions, such as the accessibility provisions of article 9, target both the earning and the conversion handicaps.185 Transportation accessibility is equally essential to travel to work as it is to travel to a store. The ‘conversion handicap’ has profound implications for social protection for persons with disabilities. It is not enough to provide persons with disabilities with the same income, goods, or services that are provided other people. In societies that have structural and attitudinal barriers, providing a person with a disability and a person without a disability with, for example, the same minimum income will not yield the same level of benefit. Article 28 acknowledges, but does not fully address, the conversion handicap by requiring states parties ‘to ensure access to appropriate and affordable services, devices and other assistance for disability-related needs . . .’.186 Most CRPD provisions list the general category first and then elucidate the general category with examples. This subparagraph is different. The general category is ‘assistance for disability-related needs’. The examples, which should be understood to be illustrative and not exhaustive, are services and devices. Some members of the Working Group suggested that the list of examples should be expanded ‘to mention explicitly technical aids 180 UNGA, ‘Interim report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities on its eighth session’ UN Doc A/AC265/2006/4 (1 September 2006) Annex II at 22. 181 Marianne Schulze, ‘A Handbook on the Human Rights of Persons with Disabilities: Understanding the UN Convention on the Rights of Persons with Disabilities’ [July 2010] 159, available at: . (‘The reference in (a) to “clean water services” is the result of a compromise regarding the right to water that some delegations wanted placed in Art 25, right to health. As an explicit reference to the “right” to water could not be achieved, this reference has to suffice.’). 182 Amartya Sen, ‘Disability and Justice’ (Disability and Development and the World Bank, A Briefing Summary, 2 February 2005) attachment 2 (emphasis in the original), available at: . 183 184 185 See eg Arts 24 and 27 CRPD. ibid Art 30(5). See ibid Art 9(1). 186 This provision uses the term ‘access’ instead of ‘equal access’ because there is no comparison group (ie people without disabilities do not have access to ‘assistance for disability-related needs’).
cremin
Article 28
819
to mobility, transfer, auditory or visual perception and other special devices that persons with disabilities require’.187 The Standard Rules on the Equalization of Opportunities for Persons with Disabilities provide more detail on the types of assistance that states parties should provide and on the reasons why this assistance is necessary: ‘States should ensure the provision of assistive devices and equipment, personal assistance and interpreter services, according to the needs of persons with disabilities, as important measures to achieve the equalization of opportunities.’188 This subparagraph requires states parties ‘to ensure access’ to ‘assistance for disability- related needs’.189 The use of the word ‘access’ in this subparagraph is slightly different than in some other contexts; here ‘access’ implies the existence of this form of assistance. A state party cannot ‘ensure access’ to ‘assistance for disability-related needs’ unless the state party provides this form of assistance. The use of the word ‘access’ is powerful in this context, because it seems to require the existence of a state programme that provides assistance for disability-related needs. The assistance for disability-related needs has to be ‘appropriate and affordable’. Both of these terms were subject to debate during negotiations. In the working group draft, ‘necessary’ was used instead of ‘appropriate’.190 ‘Necessary’ was later changed to ‘appropriate’ ‘to ensure consistency with the rest of the draft convention’.191 The Working Group draft was silent on the cost of disability-related assistance.192 A proposal was made to make it clear that assistance should be ‘free of charge’.193 Although that proposal was rejected, ‘[I]t was agreed that delegations were committed to the concept of “affordability” ’.194 Israel proposed a drastic change to this provision during the seventh session. Instead of merely ensuring access to ‘appropriate affordable’ assistance for disability-related needs, Israel suggested that states parties should be required to ‘provide persons with disabilities the necessary services, devices and other assistance in order to meet their disability-related needs’.195 The IDC made a similar proposal.196 If Israel’s proposal had been accepted, this subparagraph would have better addressed the conversion handicap. The Standard Rules suggested that access should include ‘financial accessibility’.197 Similarly, by guaranteeing that disability- related assistance will be ‘affordable’, this subparagraph seems to imply that ‘[A]ssistive devices and equipment should be provided free of charge or at such a low price that persons with disabilities or their families can afford to buy them.’198 The Reporting Guidelines of the CRPD Committee ask states parties to describe the ‘[m]easures taken to ensure access by persons with disabilities to services, devices and other appropriate assistance at affordable prices . . .’.199 If states parties do not provide this assistance for free, the social protection they provide to persons with disabilities would effectively be unequal to the social protection they provide to persons without disabilities. In its Concluding Observations for the Dominican Republic, 188 Working Group draft text (n 18) fn 100. Standard Rules, Rule 4. 190 Art 2(a) CRPD. Working Group draft text (n 18). 191 192 Sixth Session Report (n 24) para 115. Working Group draft text (n 18). 193 194 Sixth Session Report (n 24) para 114. ibid. 195 Seventh Session, ‘Comments, proposals and amendments submitted electronically’, available at: . 196 Chairman’s Text as Amended by the International Disability Caucus (n 21) 58–59 (‘provide persons with disabilities the necessary services, devices and other assistance for their disability-related needs, as well as the necessary financial means to purchase these’). 197 198 199 Standard Rules, Rule 4. ibid. CRPD Committee Guidelines (n 161) 16. 187 189
cremin
820
Adequate Standard of Living and Social Protection
for example, the CRPD Committee suggested that states parties should provide ‘subsidies for the purchase of assistive devices, medicines and assistance services, in order to mitigate the impact of such expenses and the exacerbation of poverty’.200
6. b. To ensure access . . . in particular women and girls with disabilities and older persons with disabilities, to social protection programmes . . . Subparagraph (b) requires states parties to ‘ensure access by persons with disabilities, in particular women and girls with disabilities and older persons with disabilities, to social protection programmes and poverty reduction programmes’. One key question is why mere ‘access’ is required as opposed to ‘equal access’. Another is why this subparagraph focuses ‘in particular’ on ‘women and girls with disabilities and older persons with disabilities’. Finally, it is not clear what constitutes a social protection programme or a poverty reduction programme. These topics are addressed in turn below.
6.1 Access The use of the word ‘access’ in the CRPD is examined in detail above. Subparagraph (b) is one of the parts of the CRPD where states parties are required to provide persons with disabilities with mere ‘access’, as opposed to ‘equal access’ or access ‘on an equal basis with others’. Given the importance of the topic of this subparagraph, this is particularly troubling. The text of this provision did not change significantly from the working group text to the final article.201 The negotiations do not shed much light on this decision. During the seventh session, Israel suggested replacing ‘access by’ with ‘entitlement to’ in subparagraphs (a), (b), and (c).202 This change would have clarified these provisions significantly, but it was rejected. Accessibility is one of the general principles of the CRPD.203 However, as noted above, equal access is not always the default. Only eight of the thirty-eight times that the word access is used in the CRPD is it clear that ‘equal access’ or access ‘on an equal basis with others’ is required. States parties are required to provide or promote mere ‘access’ for persons with disabilities to, inter alia: ‘information’,204 ‘new information and communications technologies and systems, including the Internet’,205 ‘age-appropriate information, reproductive and family planning education’,206 ‘health services that are gender-sensitive, 200 CRPD Committee, ‘Concluding observations on the initial report of the Dominican Republic’ UN Doc CRPD/C/DOM/CO/1 (8 May 2015) para 53. 201 The Working Group text was: ‘ensure access by persons with disabilities, particularly women and girls with disabilities and the aged with disabilities, to social security programmes and poverty reduction strategies, and to take into account the needs and perspectives of persons with disabilities in all such programmes and strategies . . .’ Working Group draft text (n 18). 202 Daily summary of discussion at the sixth session (n 58). 203 Art 3(f ) CRPD; see also CRPD Committee, ‘General Comment No. 2: Accessibility (Art 9)’ UN Doc CRPD/C/GC/2 (22 May 2014) para 4 (describing ‘accessibility’ as ‘a vital precondition for the effective and equal enjoyment of civil, political, economic, social and cultural rights by persons with disabilities’). 204 Art 9(2)(f ) CRPD; see also ibid Art 21 (titled ‘Freedom of expression and opinion, and access to information’). 205 206 ibid Art 9(2)(g). ibid Art 23(1)(b).
cremin
Article 28
821
including health-related rehabilitation’,207 ‘general technical and vocational guidance programmes, placement services and vocational and continuing training’,208 ‘appropriate and affordable services, devices and other assistance for disability-related needs’,209 ‘assistance from the state with disability-related expenses’,210 ‘public housing programmes’,211 ‘cultural materials in accessible formats’,212 ‘television programmes, films, theatre and other cultural activities, in accessible formats’,213 ‘places for cultural performances or services’,214 ‘monuments and sites of national cultural importance’,215 ‘sporting, recreational and tourism venues’,216 and ‘services from those involved in the organization of recreational, tourism, leisure and sporting activities’.217 Presumably, this is because states parties were hesitant, at least in certain contexts, to commit to providing equal access. Equal access can be costly to achieve. For example, given the potential costs involved, it might be surprising that ‘equal access’ is not required to some of these things, such as ‘monuments and sites of national cultural importance’.218 There also seems to be an implicit judgment that, for at least some of these activities, equal access is not required because the activity is not essential or of vital importance. For other activities, states parties might have been hesitant to agree to ensure equal access because they do not control the production or dissemination of the activity. Still, it is particularly troubling that in the context of this subparagraph, which addresses public programs of vital importance, equal access is not required.
6.2 Women and Girls with Disabilities During the sixth session, ‘There was general support for the deletion of the references in this subparagraph to particular groups of persons with disabilities . . .’.219 However, the reference to women and girls with disabilities was retained. The reference to women and girls is understandable given that ‘[a]s a consequence of discrimination, women represent a disproportionate percentage of the world’s poor’.220 Based on the ‘double discrimination’ that they face, the CESCR has ‘urge[d] states parties to address the situation of women with disabilities . . .’.221 As the CRPD makes clear, ‘[W]omen and girls with disabilities are often at greater risk, both within and outside the home, of violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation . . .’.222 One of the CRPD’s general principles is ‘[e]quality between men and women’.223 States parties ‘recognize that women and girls with disabilities are subject to multiple discrimination . . .’.224 They are subject to discrimination based on both having disabilities and being female. Article 6, which ‘is a cross-cutting article related to all the other articles of the Convention’,225 including article 28, requires states parties to ‘take measures to ensure the full and equal enjoyment by them of all human rights and fundamental freedoms’.226 States parties are also required to ‘take all appropriate measures to ensure the full development, advancement and empowerment of women, for the purpose of 208 209 210 ibid Art 25. ibid Art 27(1)(d). ibid Art 28(2)(a). ibid Art 28(2)(c). 212 213 ibid Art 28(2)(e). ibid Art 30(1)(a). ibid Art 30(1)(b). 214 215 216 217 ibid Art 30(1)(c). ibid. ibid Art 30(5)(c). ibid Art 30(5)(e). 218 219 ibid Art 30(1)(c). Sixth Session Report (n 24), para 117. 220 CRPD Committee, ‘General Comment No. 3: Women and girls with disabilities’ UN Doc CRPD/C/ GC/3 (25 November 2016) para 59. 221 222 CESCR, ‘General Comment No 5’ (n 77) para 19. CRPD Preamble (q). 223 224 ibid Art 3(g). ibid Art 6(1). 225 226 CRPD Committee, ‘General Comment No 3’ (n 220) para 12. Art 6(1) CRPD. 207 211
cremin
822
Adequate Standard of Living and Social Protection
guaranteeing them the exercise and enjoyment of the human rights and fundamental freedoms set out in the present Convention’.227 This subparagraph is not the only place where women and children are provided with a special mention in a general provision. States parties are required to ‘take all appropriate legislative, administrative, social, educational and other measures to protect persons with disabilities, both within and outside the home, from all forms of exploitation, violence and abuse, including their gender-based aspects’.228 More specifically, states parties are required to ‘put in place effective legislation and policies, including women-and child-focused legislation and policies, to ensure that instances of exploitation, violence and abuse against persons with disabilities are identified, investigated and, where appropriate, prosecuted’.229 In article 16, however, women and children are mentioned as examples of the types of legislation and policies that are required. This is different from the present subparagraph, which indicates that states parties should focus ‘in particular’ on women and girls (and older persons) with disabilities. The CRPD requires states parties to take a ‘twin-track approach’ to reduce inequality by ‘systematically mainstreaming the interests and rights of women and girls with disabilities’ and ‘taking targeted and monitored action aimed specifically at women with disabilities’.230 This is consistent with Sustainable Development Goal 5.231
6.3 Older Persons with Disabilities Older persons with disabilities are also singled out for special attention in this subparagraph. Given the correlation between old age and impairment,232 it is not surprising that the CRPD focuses considerable attention on older persons. Article 8, for example, requires states parties to ‘combat stereotypes, prejudices and harmful practices relating to persons with disabilities, including those based on sex and age, in all areas of life’.233 Article 16 requires states parties ‘to take all appropriate measures to prevent all forms of exploitation, violence, and abuse’ by providing, inter alia, ‘age-sensitive assistance and support . . .’.234 Article 25 requires states parties to provide health services to persons with disabilities ‘to minimize and prevent further disabilities, including among children and older persons’.235 These articles mention subsets of people with disabilities to illustrate, as opposed to limit, states parties’ obligation. The Working Group text for this subparagraph used the term ‘aged’.236 During the seventh session, however, ‘aged’ was replaced with ‘older persons’.237 ‘Older persons with disabilities’ is a vague term; it is unclear who qualifies as ‘older’. ‘Older’ is a comparative adjective. A ten-year-old girl is an ‘older person’ than a five- year-old girl. The CRPD, however, appears to be using the term ‘older persons’ to describe a class of people who are older than the society’s norm or average. As Richard Posner has written, ‘ “old age” is a relative term’ and ‘[D]ifferent societies have dated the onset of old age at different ages . . .’.238 228 229 ibid Art 6(2). ibid Art 16(1). ibid Art 16(5). CRPD Committee, ‘General Comment No 3’ (n 220) para 27. 231 UN, Sustainable Development Goals, ‘Goal 5: Achieve gender equality and empower all women and girls’, available at: . 232 See UN World Health Organization (WHO), World Report on Disability (2011) 34–36. 233 234 235 Art 8 CRPD. ibid Art 16(2). ibid Art 25(b). 236 Working Group draft text (n 18). 237 Daily summary of discussion at the seventh session (n 29). 238 Richard A Posner, Aging and Old Age (The University of Chicago Press 1995) 49. 227 230
cremin
Article 28
823
In Sierra Leone, for example, the average life expectancy at birth is approximately fifty years, and the life expectancy at age sixty is thirteen years.239 In Japan, life expectancy at birth is approximately eighty-four years.240 At age sixty it is twenty-six years.241 One would therefore expect that the perceived onset of old age is different in these two states. A person considered to be an older person in Sierra Leone, would not necessarily be considered an older person in Japan. In international instruments like the CRPD, it appears that ‘older persons’ is essentially defined as persons who are sixty or older.242 That being said, there is a growing recognition that ‘old age’, is not defined by age alone: ‘[W]hat older persons share, as a group, is the experience of living within societies in which stereotyping, the attribution of lesser value, political disempowerment and economic and social disadvantage often accompany ageing.’243 In addition to birth date, context, culture, and other societal factors play a role in determining whether an individual is considered to be an ‘older person’. There are conventions on the rights of women and the rights of children, but not on the rights of older persons. Efforts to adopt one have not yet come to fruition.244 But the rights of older persons have been included in various international instruments. The UDHR, for example, includes ‘old age’ as one of the conditions that leads to ‘the right to security’.245 The CEDAW includes a right to social security in the event of, inter alia, ‘old age’.246 The CESCR has stated that ‘states parties to the Covenant are obligated to pay particular attention to promoting and protecting the economic, social and cultural rights of older persons’.247 Similarly, the CRPD Committee has expressed particular concern ‘about the low income of older persons with disabilities, who require greater support’.248
6.4 Social Protection Programmes and Poverty Reduction Programmes This subparagraph focuses on access to social protection programmes and poverty reduction programmes. These are broad categories. A wide range of government programmes have a direct or indirect impact on social protection or poverty. This is particularly true if, as discussed below regarding subparagraph (c), one defines poverty broadly to include not only income poverty, but also human development poverty and social exclusion. The following will focus on which programmes are included within these categories.
239 WHO, ‘Life Expectancy Data by Country’ (2015), available at: . 240 241 ibid. ibid. 242 See CESCR, ‘General Comment No 6: The economic, social and cultural rights of older persons’ UN Doc E/1996/22 (8 December 1995) para 9 (‘According to the practice in the United Nations Statistical Services, these terms cover persons aged sixty and above’); see also Sixty-sixth session, ‘Item 27 (c) of the provisional agenda*, Social development: follow-up to the International Year of Older Persons: Second World Assembly on Ageing, Follow-up to the Second World Assembly on Ageing, Report of the Secretary-General’ UN Doc A/66/173 (22 July 2011)—although this report generally focuses on people who are sixty or older, it does note that ‘Older persons are not a homogenous group and should not be treated as such.’ ibid para 40. 243 ibid para 41. 244 See UN, ‘Open-Ended Working Group on Ageing for the purpose of strengthening the protection of the human rights of older persons’, available at: . 245 246 See Art 25(1) UDHR. Art 11(1)(e) CEDAW. 247 CESCR, ‘General Comment No 6’ (n 242) para 13. 248 CRPD Committee, ‘Concluding observations on the initial report of Chile’ UN Doc CRPD/C/CHL/ CO/1 (12 May 2016) para 59.
cremin
824
Adequate Standard of Living and Social Protection
Based on the definitions discussed above, social protection programs are ‘interventions aimed at securing the well-being of a person in the event of social risk and need’.249 These programmes can be categorized based on the type of assistance provided or based on the beneficiaries of the assistance. Social protection programs can provide ‘unconditional and conditional cash transfers and in-kind assets or support’.250 Examples of in-kind benefits include food, housing and other essential supplies. In terms of beneficiaries, there are three main types of social protection programs: i) ‘targeted programmes’ which specifically target people with disabilities—eligibility is limited to persons with severe impairment, or an inability to work, who are living in poverty; ii) ‘mainstream programmes’ which target groups at risk of poverty; and iii) ‘targeted mainstream programmes’ which explicitly include people with disabilities within their targeting criteria.251
Programs that target persons with disabilities often include a definition of what disability means within the context of the benefit. States sometimes define disability differently depending on the relevant benefit. In the United States of America, for example, the definition of disability for social security benefits is very different from the definition of disability in the federal law that provides education benefits to children with disabilities.252 Social protection programmes that target persons with disabilities often do so using a medical definition of disability.253 This is inconsistent with the CRPD’s description of ‘disability’ as ‘the interaction between persons with impairments and attitudinal and environmental barriers that hinder[] their full and effective participation in society on an equal basis with others’.254 The Special Rapporteur has stated that ‘states should review their national definition of persons with disabilities to ensure its conformity with the [CRPD]’.255 Poverty reduction programmes seem to be a subset of social protection programmes. It is difficult to imagine a poverty reduction programme that could not also be conceived of as a social protection programme. This provision originally focused on ‘poverty reduction strategies’.256 During the seventh session, however, the wording was changed to ‘poverty reduction programmes’.257 States parties have to design and implement these programs to ensure that persons with disabilities have access to them. ‘[S]tatistical and anecdotal evidence shows that the vast majority of people with disabilities are not actually reached or protected by social
249 Report of the Special Rapporteur (n 30) para 5 (citing CESCR, ‘General Comment No 19’ (n 83), para 2). 250 Brigitte Rohwerder, ‘Disability Inclusion in Social Protection’ (13 January 2014) 5 GSDRC Helpdesk Research Report, available at: . 251 ibid 4 quoting Palmer (n 127) 148. 252 cf 42 USC § 423(d)(1)(A) (defining ‘disability’ as the ‘inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than twelve months’) with 20 USC § 1401(3)(A) (defining ‘child with a disability’ as ‘a child—(i) with intellectual disabilities, hearing impairments (including deafness), speech or language impairments, visual impairments (including blindness), serious emotional disturbance (referred to in this chapter as ‘emotional disturbance’), orthopedic impairments, autism, traumatic brain injury, other health impairments, or specific learning disabilities; and (ii) who, by reason thereof, needs special education and related services’). 253 254 Rohwerder (n 250) 5. CRPD Preamble (e); see also CRPD Art 1. 255 256 Report of the Special Rapporteur (n 30) para 56. See Working Group draft text (n 18). 257 Daily summary of discussion at the seventh session (n 29) (‘The Chair stated that there was a good level of support to change that language to “poverty reduction programmes” and that this would be done.’).
cremin
Article 28
825
protection programmes.’258 To remedy this, programmes must, inter alia, be located in accessible buildings, make materials available in alternative formats, make reasonable accommodations when necessary and ensure effective notice and communication.259 The CRPD Committee has repeatedly expressed concern about the impact of ‘financial crises’ and ‘austerity measures’ on social protection programmes.260 In difficult economic times, states parties have a duty to: (1) ‘assess . . . the adverse effect of austerity measures’ on people with disabilities,261 and (2) ‘mitigate the consequences’ that austerity measures have on social protection programmes.262
7. c. To ensure access . . . to assistance from the State with disability-related expenses, including adequate training . . . Subparagraph (c) focuses on persons with disabilities and their families who are living in situations of poverty. For that subset of persons with disabilities, states parties are required to ensure access ‘to assistance from the State with disability-related expenses . . .’. Examples of disability-related expenses include ‘adequate training, counseling, financial assistance and respite care’. Because the role of families and the nuances of access263 are discussed above, this section focuses primarily on the meaning of the terms ‘situations of poverty’, ‘assistance from the State’, and ‘disability-related expenses’.
258 Rohwerder (n 250) 5, citing Mleinek and Davis ‘Disability and Social Protection in Indonesia’ (2012) GIZ). 259 See CRPD Committee, ‘General Comment No 2’ (n 203) para 42 (‘states parties should take the necessary measures to ensure that both mainstream and disability-specific social protection measures and services are provided in an accessible manner, in accessible buildings, and that all information and communication pertaining to them is accessible through sign language, Braille, accessible electronic formats, alternative script, and augmentative and alternative modes, means and formats of communication’); CESCR, ‘General Comment No 19’ (n 83) para 27. See also eg Alexander v Choate, 469 US 287, 301 (1985) (‘[A]n otherwise qualified handicapped individual must be provided with meaningful access to the benefit that the grantee offers. . . . . [T]o assure meaningful access, reasonable accommodations in the grantee’s program or benefit may have to be made.’); Stieberger v Apfel, 134 F 3d 37, 39 (2d Cir 1997) (‘[W]here claimants seek disability benefits because of mental illness, several [court]s have ruled that notice of administrative appellate time limits is constitutionally defective when received by a person too mentally ill to understand the notice . . . ’.); Am Council of Blind v Astrue, No 05–4696–WHA, 2009 WL 3400686, at *27–28 (N D Cal 20 October 2009) (ordering the Social Security Administration to offer beneficiaries with vision impairments alternative forms of notice, including communication in Braille, a navigable Microsoft Word CD, and oral communication). 260 CRPD Committee, ‘Concluding observations on the initial report of Italy’ UN Doc CRPD/C/ITA/ CO/1 (5 October 2016) paras 71–72; CRPD Committee, ‘Concluding observations: Lithuania’ (n 142), paras 55–56; CRPD Committee, ‘Concluding observations on the initial report of Portugal’ UN Doc CRPD/C/ PRT/CO/1 (9 May 2016) paras 53–54; CRPD Committee, ‘Concluding observations: European Union’ (n 149) paras 66–67; see also CRPD Committee, ‘List of issues in relation to the initial report of Cyprus’ UN Doc CRPD/C/CYP/Q/1 (5 October 2016) para 32; CRPD Committee, ‘List of issues in relation to the initial report of Lithuania’ UN Doc CRPD/C/LTU/Q/1 (1 October 2015) para 26; CRPD Committee, ‘List of issues in relation to the initial report of Portugal’ UN Doc CRPD/C/PRT/Q/1 (1 October 2015) paras 24–25; CRPD Committee, ‘List of issues in relation to the initial report of the European Union’ UN Doc CRPD/C/ EU/Q/1 (15 May 2015) para 33; CRPD Committee, ‘List of issues in relation to the initial report of Croatia’ UN Doc CRPD/C/HRV/Q/1 (30 October 2014) para 31; CRPD Committee, ‘List of issues in relation to the initial report of Czech Republic’ UN Doc CRPD/C/CZE/Q/1 (28 October 2014) para 31. 261 CRPD Committee, ‘Concluding observations: Italy’ (n 260) para 71. 262 CRPD Committee, ‘List of issues: Cyprus’ (n 260) para 32. 263 This subparagraph is an example of when the decision not to require ‘equal access’ is understandable because there is no comparison group—only persons with disabilities need assistance with disability-related expenses.
cremin
826
Adequate Standard of Living and Social Protection
7.1 Situations of Poverty This subparagraph limits assistance to persons with disabilities and their families who are living in situations of poverty. This leads to two questions: 1) Why isn’t this assistance universal?; and 2) Who qualifies for assistance? These questions are addressed in turn below. From the start of negotiations, the proposed assistance was not universal. The Chair’s 2003 draft suggested that assistance should be limited not only by income, but also by the severity of a person’s disability.264 The Working Group, however, noted that ‘The Ad Hoc Committee may wish to consider whether the provisions of this subparagraph should apply to persons with disabilities generally.’265 The IDC suggested completely revising this provision to focus on autonomy.266 During the seventh session, Israel made a similar proposal.267 These proposals were animated in part by the idea that the topic of subparagraph (c) is or should be covered in subparagraph (a).268 These proposals were rejected, and the focus on persons with disabilities living in poverty was retained.269 State assistance often targets a subset of the population. This is for practical reasons. In a world of limited resources, states parties should assist a person with disabilities who is living in poverty before it assists a person with disabilities who is not. If states parties did not, the person with disabilities who is living in poverty might be faced with the choice between paying for disability-related expenses or other essentials of life. That choice is less likely to be as stark for persons with disabilities who are not living in situations of poverty. Who is entitled to access to assistance? The phrase, ‘living in situations of poverty’ is vague. Because this subparagraph focuses on ‘expenses’, one might read it to focus narrowly on income. Using ‘situations of’ in combination with the word ‘poverty’, however, seems to imply that it is not just a question of income. ‘Situations of poverty’ is similar to the use of the phrase ‘live in conditions of poverty’ in the preamble.270 Focusing on income alone would not necessarily capture which persons with disabilities ‘live in conditions of poverty’ or ‘situations of poverty’. If low income alone does not equal ‘poverty’, what does? The Independent Expert on the question of human rights and extreme poverty has put forth a ‘working definition’ of poverty that has three components: ‘income poverty, human development poverty
264 United Nations Enable, ‘Chair’s Draft Elements of a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ [December 2003] Art 26 (‘states parties recognize the right of members of the families of persons with severe and multiple disabilities living in situations of poverty, to receive assistance from the State to cover disability- related expenses (including respite care), which should not become a disincentive to develop themselves’), available at: . 265 Working Group draft text (n 18) fn 103. 266 Chairman’s Text as Amended by the International Disability Caucus (n 21) 58–59 (‘ensure that autonomy is preserved in the delivery of social assistance and participation in social insurance scheme, including by prohibiting provision of any service or benefits contingent on acceptance of any other service, and that services always contribute to the full participation of people with disability in the community’). 267 Seventh Session Comments (n 195) (‘ensure that autonomy is preserved in the implementation of social protection schemes and that such schemes contribute to the full participation of people with disabilities in the community’). 268 ibid (‘The present paragraph (c) is largely covered by paragraph (a)’). 269 Sixth Session Report (n 24) para 120 (‘Many delegations suggested that the defining element of this subparagraph was the situation of persons with disabilities living in poverty.’). 270 CRPD, Preamble (t).
cremin
Article 28
827
and social exclusion’.271 Income poverty can be absolute or relative.272 An example of an absolutist interpretation is the idea that there is a ‘global poverty line of one dollar a day’.273 Under this interpretation, a person who lives on less than one dollar a day is poor. A person who lives on more than one dollar a day is not. It is a bright line. A relativist interpretation takes into account the social norms in a particular community.274 A person who earns US$5,000 per year might be considered poor in one community but not in another. Human development poverty refers to a wider range of ‘elements of well-being’ than just income. These elements include ‘health, education, food, nutrition and other basic needs or requirements for a decent life’.275 To determine whether a person with a disability is living in a situation of poverty, ‘[O]ne has to look at the elements and the level of both income poverty and human development, and at their interdependence’.276 Both income poverty and human development poverty focus on the individual. The third component of poverty, social exclusion, ‘focuses on social relationships’.277 The CRPD clearly recognizes the extreme cost of social exclusion; the right to participation is paramount. The CRPD describes the term ‘disability’ itself as the result of ‘the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others’.278 This is just one of the four times in the Preamble alone that the CRPD emphasizes the importance of ‘participation’.279 One of the CRPD’s ‘general principles’ is ‘[f ]ull and effective participation and inclusion in society’.280 Two other general principles—‘[a]ccessibility’ and ‘[n]on- discrimination’—are also essential to allow persons with disabilities to participate in society.281 Until the CRPD is fully implemented, persons with disabilities will often face the social exclusion that is a key component of poverty. In its Concluding Observations,282 the CRPD Committee has repeatedly emphasized the link between article 28 and target
271 Commission on Human Rights, Sixty-first session, ‘Report of the independent expert on the question of human rights and extreme poverty, Arjun Sengupta’ UN Doc E/CN4/2005/49 (11 February 2005) para 18. 272 ibid paras 3–5. 273 Michael Ashley Stein, Penelope JS Stein, ‘Disability, Development, And Human Rights: A Mandate And Framework For International Financial Institutions’ [2014] 47 UC Davis L Rev 1231, 1233; the Sustainable Development Goals note that ‘extreme poverty’ is ‘currently measured as people living on less than $1.25 a day’. UN, Sustainable Development Goals, ‘Goal 1 targets’, available at: . 274 275 276 Commission on Human Rights (n 271) para 5. ibid para 9t. ibid para 12. 277 278 ibid para 15. CRPD Preamble (e) (emphasis added); see also ibid Art 1. 279 ibid Preamble (e), (k), (m), and (y); the term ‘participation’ or ‘participate’ appears a total of twenty-five times within the CRPD. 280 281 ibid Art 3. ibid. 282 See CRPD Committee, ‘Concluding observations on the initial report of Ethiopia’ UN Doc CRPD/C/ ETH/CO/1 (3 November 2016), para 62; CRPD Committee, ‘Concluding observations: Italy’ (n 260) para 72; CRPD Committee, ‘Concluding observations on the initial report of United Arab Emirates’ UN Doc CRPD/C/ARE/CO/1 (2 October 2016) para 52; CRPD Committee, ‘Concluding observations on the initial report of Colombia’ UN Doc CRPD/C/COL/CO/1 (29 September 2016) para 63; CRPD Committee, ‘Concluding observations on the initial report of Serbia’ UN Doc CRPD/C/SRB/CO/1 (23 May 2016) para 58; CRPD Committee, ‘Concluding observations on the initial report of Slovakia’ UN Doc CRPD/C/SVK/ CO/1 (13 May 2016) para 76; CRPD Committee, ‘Concluding observations on the initial report of Thailand’ UN Doc CRPD/C/THA/CO/1 (12 May 2016) para 62; CRPD Committee, ‘Concluding observations on the initial report of Uganda’ UN Doc CRPD/C/UGA/CO/1 (12 May 2016) para 55; CRPD Committee, ‘Concluding observations: Portugal’ (n 260) para 54.
cremin
828
Adequate Standard of Living and Social Protection
10.2 of the Sustainable Development Goals, which focuses on promoting ‘social, economic and political inclusion’.283
7.2 Assistance from the State This subparagraph requires states parties ‘to ensure access by persons with disabilities and their families living in situations of poverty to assistance from the state with disability- related expenses . . .’.284 Here, the use of the word ‘access’ is slightly different than in some other contexts; ‘access’ implies the existence of this form of assistance. A state party cannot ‘ensure access’ to this form of assistance unless the state party provides this form of assistance. The use of the word ‘access’ strongly implies that states parties have to have a programme that provides assistance with disability-related expenses. That being said, the term ‘assistance from the state’ is vague. The level of assistance is unspecified. Is it sufficient for a state party to provide assistance with merely one percent of the cost of the relevant disability-related expenses? The text of this subparagraph does not provide a clear answer. Unlike subparagraph (a), this subparagraph does not specify that the state party has to ensure that the assistance results in the expenses becoming ‘affordable’.285
7.3 Disability-Related Expenses Disability-related expenses ‘contribute to the elevated worldwide poverty rate among individuals with disabilities’.286 These expenses are a burden that disproportionally consumes the income of persons with disabilities.287 Many social protection programs fail to take into account disability-related expenses.288 Subparagraph (c) requires states parties to provide persons with disabilities and their families assistance with ‘disability-related expenses’. These expenses include: ‘adequate training, counselling, financial assistance and respite care’.289 This subparagraph is focused in part on the caregiver problem of social justice.290 In this way, it is different from paragraph 1. Paragraph 1 notes that the families of persons with disabilities might benefit from the adequate standard of living, but the right to the 283 Sustainable Development, ‘Targets & Indicators: Target 10.2’, available at: . 284 285 Art 2(c) CRPD. cf ibid Art 2(a) with ibid Art 2(c). 286 Michael Ashley Stein, Penelope JS Stein, ‘Disability, Development, and Human Rights: A Mandate and Framework for International Financial Institutions’ (2014) 47 UC Davis L Rev 1231, 1233; see also Ann Elwan, ‘Poverty and Disability: A Survey of the Literature’ [18 December 1999] (Social Protection Discussion Paper Series No 9932) 24 (‘Studies have identified three types of factors which can make disabled people, or families with disabled people, worse off: . . . (i) loss of income; (ii) additional costs resulting from the disability; and (iii) marginalization or exclusion from services and/or social and community activities, etc.’), available at: . 287 See Burnip v Birmingham City Council [2012] EWCA Civ 629 [1](‘Disability can be expensive. It can give rise to needs which do not attach to the able-bodied.’) See also Mark S Stein, Distributive Justice & Disability: Utilitarianism v. Egalitarianism (Yale University Press 2006) 39 (‘[I]f disabled people spend some of their own money on medical and other disability-related expenses, they will have less money to spend on other things than nondisabled people who begin with the same income.’). 288 International Disability Alliance, ‘Ensuring that the Social Protection Floor Works for Persons with Disabilities’ (3 November 2011) 4, available at: . 289 Art 28(2)(c) CRPD. 290 See Martha C Nussbaum, Frontiers of Justice: Disability, Nationality, Species Membership (The Belknap Press 2006) 99–100.
cremin
Article 28
829
adequate standard of living belongs to persons with disabilities alone. This subparagraph, however, ensures that both persons with disabilities and their families have access to assistance with disability-related expenses. The CESCR’s General Comment No. 5 emphasizes the importance of providing support to ‘individuals (who are overwhelmingly female) who undertake the care of a person with disabilities’.291 The CESCR’s General Comment No. 19 does the same.292 The Standard Rules on the Equalization of Opportunities for Persons with Disabilities also suggested that income maintenance and social security programs should ‘take[] into account the costs frequently incurred by persons with disabilities and their families as a result of the disability’.293 Working Group members debated about whether the assistance from the state required by this subparagraph should extend to the families of persons with disabilities.294 Japan argued that the reference to ‘families’ in this and other provisions should be deleted.295 Kenya disagreed, noting that ‘[I]n most developing countries, social security is based on the family and so families should be protected alongside [persons with disabilities] in [this provision]’.296 During the sixth session, there was ‘general support to retain the reference to “families” in this subparagraph, as families were particularly relevant in the context of this draft article’.297 This subparagraph mentions only four examples of disability-related expenses: adequate training, counselling, financial assistance and respite care. This is not an exhaustive list. Disability-related expenses include, among other things, ‘medical expenses, equipment (crutches, wheelchairs, etc), adaptations to housing, specialized services, etc’.298 Some of these expenses are necessary to overcome ‘environmental barriers that hinder full and effective participation in society’.299 The Standard Rules on the Equalization of Opportunities for Persons with Disabilities highlights the importance of respite care and ‘the inclusion in family counselling of appropriate modules regarding disability and its effects on family life’.300 The income that a family member forgoes to provide care for a person with a disability can also be understood to be a disability-related expense.301 CESCR, ‘General Comment No 5’ (n 77) para 28. See CESCR, ‘General Comment No 19’ (n 83) para 20 (noting that adequate income support ‘should cover family members and other informal carers’). 293 294 Standard Rules, Rule 8(1). Working Group draft text (n 18) fn 102. 295 Daily summary of discussion at the sixth session (n 58) (‘As a matter of principle any reference to “families” should be deleted as [persons with disabilities] are the focus of the convention and families are often the cause of [] isolation [for persons with disabilities].’). 296 Daily summary of discussion at the seventh session (n 29). 297 Sixth Session Report (n 24) para 122. 298 Elwan (n 286) 25; see also, Palmer (n 127) 144 (Persons with disabilities ‘are subject to disability- related expenses, such as health care and equipment, special dietary and travel requirements, and adaptation to housing, which exacerbate income poverty’). 299 CRPD Preamble (e); see Report of the Special Rapporteur (n 30) para 30 (‘Importantly, many of these extra costs are directly related to lack of accessibility. An obvious example is transportation, where a person with a disability may be obliged to use taxis on a daily basis owing to the non-accessibility of the public transport system.’). 300 Standard Rules, Rule 9(1). 301 Report of the Special Rapporteur (n 30) para 31; see also eg CRPD Committee, ‘Concluding observations on the initial report of Paraguay’ UN Doc CRPD/C/PRY/CO/1 (15 May 2013) para 67 (‘The Committee is also concerned at the inadequacy of measures to compensate persons with disabilities and their families, whose income is reduced because of their disability. . . .’); CRPD Committee, ‘List of issues in relation to the initial report of Sweden’ UN Doc CRPD/C/SWE/Q/1 (30 September 2013), para 35 (inquiring as to the extent that ‘the State party provide[s]financial compensation for loss of income to families with children with disabilities. . . .’). 291 292
cremin
830
Adequate Standard of Living and Social Protection
In its Lists of Issues302 and Concluding Observations,303 the CRPD Committee has frequently emphasized the importance of providing support to cover disability-related expenses. The Committee’s comments highlight the link between support to cover these expenses and providing an adequate standard or living. For example, the CRPD Committee recommended that the United Arab Emirates ‘[i]ncrease social welfare benefits, including those covering the cost of disability-related expenses, to ensure an adequate standard of living for persons with disabilities and their families. . . .’.304 The CRPD Committee also has emphasized the key role that ‘universal’ health-care services play in ‘support[ing] disability-related expenses and enabl[ing] [persons with disabilities] to achieve an adequate standard of living’.305
8. d. To ensure access by persons with disabilities to public housing programmes Subparagraph (d) changed significantly during the drafting process. In the working group text, this provision required states parties to ‘ensure access by persons with disabilities to governmental housing programs, including through earmarking percentages of governmental housing for persons with disabilities’.306 Some members of the Working Group objected that the last phrase was ‘was too prescriptive and may limit the measures that states parties could take to ensure access to governmental housing programmes’.307 Numerous states parties, including Japan, EU, 302 See CRPD Committee, ‘List of issues in relation to the initial report of Honduras’ UN Doc CRPD/ C/HND/Q/1 (6 October 2016) para 23; CRPD Committee, ‘List of issues: Cyprus’ (n 260) para 33; CRPD Committee, ‘List of issues in relation to the initial report of Colombia’ UN Doc CRPD/C/COL/Q/1 (10 August 2016) para 22; CRPD Committee, ‘List of issues in relation to the initial report of the Plurinational State of Bolivia’ UN Doc CRPD/C/BOL/Q/1 (12 May 2016) para 23; CRPD Committee, ‘List of issues in relation to the initial report of Italy’ UN Doc CRPD/C/ITA/Q/1 (29 April 2016) para 29; CRPD Committee, ‘List of issues in relation to the initial report of Serbia’ UN Doc CRPD/C/SRB/Q/1 (2 October 2015) para 23; CRPD Committee, ‘List of issues: Portugal’ (n 260) para 26; CRPD Committee, ‘List of issues in relation to the initial report of the Dominican Republic’ UN Doc CRPD/C/DOM/Q/1 (28 October 2014) para 29; CRPD Committee, ‘List of issues in relation to the initial report of Azerbaijan’ UN Doc CRPD/C/AZE/ Q/1 (30 September 2013) para 30; CRPD Committee, ‘List of issues: Sweden’ (n 301) para 35; CRPD Committee, ‘List of issues in relation to the initial report of Paraguay’ UN Doc CRPD/C/PRY/Q/1 (15 October 2012) para 28. 303 See CRPD Committee, ‘Concluding observations: Bolivia’ (n 148) paras 63–64; CRPD Committee, ‘Concluding observations: Ethiopia’ (n 282) para 61; CRPD Committee, ‘Concluding observations: United Arab Emirates’ (n 282) para 52; CRPD Committee, ‘Concluding observations: Colombia’ (n 282) para 62–63; CRPD Committee, ‘Concluding observations: Uruguay’ (n 148) para 60; CRPD Committee, ‘Concluding observations: Thailand’ (n 282) para 58; CRPD Committee, ‘Concluding observations: Uganda’ (n 282) para 55; CRPD Committee, ‘Concluding observations: Lithuania’ (n 142) para 54; CRPD Committee, ‘Concluding observations: Gabon’ (n 149) para 61; CRPD Committee, ‘Concluding observations on the initial report of Brazil’ UN Doc CRPD/C/BRA/CO/1 (29 September 2015) para 51; CRPD Committee, ‘Concluding observations on the initial report of Croatia’ UN Doc CRPD/C/HRV/CO/1 (15 May 2015) para 44; CRPD Committee, ‘Concluding observations on the initial report of Germany’, UN Doc CRPD/C/DEU/ CO/1 (13 May 2015) paras 51–52; CRPD Committee, ‘Concluding observations on the initial report of Mongolia’ UN Doc CRPD/C/MNG/CO/1 (13 May 2015) para 43; CRPD Committee, ‘Concluding observations: Dominican Republic’ (n 200) para 52–53; CRPD Committee, ‘Concluding observations on the initial report of New Zealand’ UN Doc CRPD/C/NZL/CO/1 (30 October 2014) para 60; CRPD Committee, ‘Concluding observations: Paraguay’ (n 301) para 67. 304 CRPD Committee, ‘Concluding observations: United Arab Emirates’ (n 282) para 52. 305 CRPD Committee, ‘Concluding observations: Thailand’ (n 282) para 58. 306 307 Working Group draft text (n 18). ibid fn 104.
cremin
Article 28
831
Canada, Liechtenstein, New Zealand, Australia, proposed deleting this phrase during the third session.308 The EU again proposed deleting this phrase during the sixth session.309 The EU also suggested changing ‘governmental housing programs’ to ‘public housing programs’.310 One question that came up repeatedly was whether this provision should also include private housing. The Working Group considered whether this provision should ensure ‘non-discriminatory access to privately provided housing’.311 Later, during the third session, the Philippines suggested expanding this provision to also include private housing.312 Uganda proposed that states parties should be required to ‘encourage private developers to cater for persons with disabilities’.313 These proposals were rejected. The main reason is that this article in general is focused on public, as opposed to private, programs. Moreover, private housing is covered elsewhere in the CRPD. Article 9 requires states parties to ‘take appropriate measures to ensure to persons with disabilities access, on an equal basis with others, to the physical environment . . .’.314 These measures, which include ‘the identification and elimination of obstacles and barriers to accessibility’, apply to numerous areas of life, including housing.315 More generally, the CRPD repeatedly emphasizes the right that people with disabilities have to liberty and to be included in the community.316 Community integration is not possible without accessible housing. Given that housing is of central importance, it is somewhat troubling that this subparagraph merely requires ‘access’ as opposed to ‘equal access’ or access ‘on an equal basis with others’. Persons with disabilities should have equal access to public housing programmes. If they do not, the state party is directly discriminating against persons with disabilities in a domain, housing, that is important enough to be included in paragraph 1 as one of the key elements of an adequate standard of living. The CRPD Committee has stated that ‘[s]ocial housing programmes should offer housing that is, inter alia, accessible for persons with disabilities and the elderly’.317 The CRPD Committee also has indicated that social housing should be ‘planned from the perspective of universal design’ to ensure accessibility.318 308 Third Session of the Ad Hoc Committee, ‘Compilation of proposed revisions and amendments made by the members of the Ad Hoc Committee to the draft text presented by the Working Group as a basis for negotiations by Member States and Observers in the Ad Hoc Committee of the draft Convention’, Annex II, available at: . 309 310 Sixth Session Comments (n 28). ibid. 311 312 Working Group draft text (n 18) fn 104. Third Session Compilation (n 308). 313 314 315 ibid. Art 9(1) CRPD. ibid Art 9(1)(a). 316 Prior to the CRPD, ‘[N]o specific binding international human rights convention exist[ed] to protect explicitly the right of people with disabilities to live in the community or to be free from indeterminate institutionalization.’ Eric RosenthaL, Arlene Kanter, ‘The Right to Community Integration for People with Disabilities under United States and International Law’ [2010] Disability Rights Educ & Defense Fund, available at: . However, ‘References to community integration are found in Article 23 of the Convention on the Rights of the Child, and in instruments and documents of the UN General Assembly such as the Declaration on the Rights of Mentally Retarded Persons, the 1991 Principles for the Protection of Persons with Mental Illness, the 1993 Standard Rules on Equalization of Opportunities for Persons with Disabilities, and General Comment 5 to the International Convention on Economic, Social and Cultural Rights, as well as in the Charter of Fundamental Rights of the European Union.’ ibid (citations omitted). 317 CRPD Committee, ‘General Comment No 2’ (n 203) para 42. 318 CRPD Committee, ‘Concluding observations on the initial report of Ecuador’ 26 October 2014 UN Doc CRPD/C/ECU/CO/1 (26 October 2014) para 45.
cremin
832
Adequate Standard of Living and Social Protection
9. e. To ensure equal access by persons with disabilities to retirement benefits and programmes States parties are required to provide persons with disabilities with ‘equal access’ to retirement benefits and programmes. Because the term ‘equal access’ has been extensively discussed above, this portion will focus on the meaning of the term ‘retirement benefits and programmes’. Retirement is a relatively new concept in human history. As life spans increased, the idea of a post-work life emerged. Although the UDHR319 and the ICESCR320 include a right to social security, neither directly mentions the concept of retirement. The UDHR includes ‘the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control ’.321 Retirement is a type of ‘unemployment’. It generally occurs in ‘old age’. However, given that the UDHR provision focuses on circumstances that are ‘beyond [one’s] control’, it raises the question of whether someone who voluntarily retires before the onset of ‘old age’ should be entitled to the ‘right to security’. The ICESCR states the right to social security more broadly: ‘The states parties to the present Covenant recognize the right of everyone to social security, including social insurance.’322 The CEDAW specifically emphasizes that women have the ‘right to social security, particularly in cases of retirement . . .’.323 There was early interest in making sure that persons with disabilities were not excluded from retirement programs. Mexico’s 2002 working paper included a provision that would have required states parties to ‘[g]uarantee that social security systems and other social welfare programs for the public in general do not exclude persons with disabilities, particularly in cases of . . . retirement’.324 However, retirement was not addressed in the working group draft text.325 Late in negotiations, Colombia proposed what would become the final text of this subparagraph.326 It was supported by Argentina, Brazil, Chile, Costa Rica, Ecuador, El Salvador, Guatemala, Jamaica, Mexico, Panama, and Trinidad and Tobago.327 To the extent that retirement is generally thought of as being for older persons, this subparagraph overlaps with subparagraph (b). As discussed above, subparagraph (b) requires states parties to ensure persons with disabilities access to ‘social protection programmes and poverty reduction programmes’. It places particular emphasis on ‘women and girls with disabilities and older persons with disabilities’. Retirement benefits and programmes are a subset of ‘social protection programmes and poverty reduction programmes’. Retirement programmes, which can be contributory or non-contributory, provide people with income after they stop working. This subparagraph might be seen as emphasizing the particular importance of retirement
Art 22 UDHR (‘Everyone, as a member of society, has the right to social security. . . .’). 321 Art 9 ICESCR. Art 25(1) UDHR (emphasis added). 322 323 Art 9 ICESCR (emphasis added). Art 11(1)(e) CEDAW. 324 Ad Hoc Committee on a Compressive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities, ‘Comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities, Working paper by Mexico, Article 15’ (New York, 29 July–9 August 2002) UN Doc A/AC 265/WP, available at: . 325 Working Group draft text (n 18). 326 Seventh Session Comments (n 195). 327 ibid. 319 320
cremin
Article 28
833
benefits and programmes. First, unlike other social protection programmes and poverty reduction programmes, retirement programmes are specifically mentioned. Second, unlike other social protection programmes and poverty reduction programmes to which persons with disabilities are merely ensured ‘access’, this subparagraph ensures persons with disabilities ‘equal access’ to retirement benefits and programmes.
cremin
Article 29 Participation in Political and Public Life States Parties shall guarantee to persons with disabilities political rights and the opportunity to enjoy them on an equal basis with others, and shall undertake to: (a) Ensure that persons with disabilities can effectively and fully participate in political and public life on an equal basis with others, directly or through freely chosen representatives, including the right and opportunity for persons with disabilities to vote and be elected, inter alia, by: (i) Ensuring that voting procedures, facilities and materials are appropriate, accessible and easy to understand and use; (ii) Protecting the right of persons with disabilities to vote by secret ballot in elections and public referendums without intimidation, and to stand for elections, to effectively hold office and perform all public functions at all levels of government, facilitating the use of assistive and new technologies where appropriate;
(iii) Guaranteeing the free expression of the will of persons with disabilities as electors and to this end, where necessary, at their request, allowing assistance in voting by a person of their own choice; (b) Promote actively an environment in which persons with disabilities can effectively and fully participate in the conduct of public affairs, without discrimination and on an equal basis with others, and encourage their participation in public affairs, including: (i) Participation in non- governmental organizations and associations concerned with the public and political life of the country, and in the activities and administration of political parties; (ii) Forming and joining organizations of persons with disabilities to represent persons with disabilities at international, national, regional and local levels.
1. Introduction 2. Background and Travaux Préparatoires 3. Article 29 Chapeau 3.1 Exclusions or Restrictions in the Chapeau 3.2 Legal Capacity 4. Paragraph (a) 4.1 Participation 4.2 Participate Directly (Right to Vote) or through Representatives (to Be Elected) 5. Paragraph (a)(i) 5.1 Accessible Voting 5.2 Accessibility 5.3 Equality in Voting Procedures 6. Paragraph (a)(ii) 7. Paragraph (a)(iii) 7.1 Assistance in Voting
du plessis and njau
835 835 843 845 846 849 849 850 851 851 853 854 854 857 858
Article 29
835
7.2 Article 29(a) Exclusion and/or Restrictions to the Right to Vote and Be Elected 8. Paragraph (b) 8.1 Effective and Fully Participate in the Conduct of Public Affairs 9. Paragraph (b)(i) and (ii)
859 860 861 862
1. Introduction Active citizenship and the right to participate in political and public life are at the core of a functioning democratic state.1 The liberty of persons with disabilities to fully exercise this right has been predominantly curtailed by the existence of obstacles and/or barriers such as exclusionary legal provisions, inaccessible voting procedures, and voting facilities. Lack of legal capacity is one of the key barriers faced by persons with disabilities.2 A majority of countries link the right to political participation to the legal capacity of persons with disabilities and have an automatic or quasi-automatic exclusion provision in their legal systems.3 Like all rights provided for under international human rights law, political, and public life participation is to be recognized, enjoyed, and exercised without exclusions and/or restrictions. The Working Group to the Ad Hoc Committee of the draft Convention,4 was given a mandate to draft article 29 Convention on the Rights of Persons with Disabilities (CRPD) in line with the universal human rights treaties, to provide for a protection mechanism that would ensure that persons with disabilities are entitled to the same entitlement to participate in political and public life in the same manner as other persons without disabilities.5
2. Background and Travaux Préparatoires Article 21 of the Universal Declaration of Human Rights (UDHR)6 provided the basis for political rights as later articulated in the International Covenant on Civil and Political Rights (ICCPR).7 The ICCPR was one of the first international instruments to recognize and protect the right of every citizen to take part in the conduct of public affairs, the right to vote and to be elected and the right to have access to public service.8 Another significant international instrument is the Convention on the Elimination of all Forms of Discrimination Against Women (CEDAW).9 CEDAW addressed the elimination of discrimination against women in political and public life.10 The ILO Convention 1 UN Human Rights Committee, ‘General Comment No 25: The right to participate in public affairs, voting rights and the right of equal access to public service (Art 25)’ UN Doc CCPR/C/21/Rev1/Add7 (12 July 1996). 2 Gerard Quinn ‘A Short Guide to the United Nations Convention on the Rights of Persons with Disabilities’ (2009) 1 European Yearbook of Disability Law 89, 105. 3 European Union Fundamental Rights Agency (FRA), ‘The Right to Political Participation of Persons with Mental Health Problems and Persons with Intellectual Disabilities’ (October 2010) 16–17, para 2.1. 4 United Nations, Working Group (5 to 16 January 2004), available at: . 5 János Fiala-Butora, Michael Ashley Stein, Janet E Lord ‘The Democratic Life of the Union: Toward Equal Voting Participation for Europeans with Disabilities’ (2014) 55 Harvard International Law Journal 85. 6 Universal Declaration of Human Rights (adopted 10 December 1948) UNGA Res 217 A(III) (UDHR). 7 8 See Art 21 ICCPR. Art 25 ICCPR. 9 Convention on the Elimination of All Forms of Discrimination against Women (adopted 18 December 1979) (CEDAW). 10 Art 7 CEDAW.
du plessis and njau
836
Participation in Political and Public Life
concerning Indigenous and Tribal Peoples in Independent Countries11 also dealt with governments establishing means for indigenous and tribal people to freely participate at all levels of decision making in elective institutions.12 The Convention on the Rights of the Child (CRC)13 recognized that children have the right of civil and political participation.14 The International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families15 afforded migrant workers and members of their families the right to participate in the public affairs of their state of origin and to vote and be elected.16 The Committee on the Elimination of Racial Discrimination (CERD)17 was also instrumental in guaranteeing the right of everyone, without distinction as to race, colour, or national or ethnic origin, to equality before the law and enjoyment of political rights.18 From an African region perspective—political rights have been built into the African Charter on Human and Peoples’ Rights.19 In the European region political rights were included in the European Convention for the Protection of Human Rights and Fundamental Freedoms.20 The American Convention on Human Rights prescribed the right of participation in political and public life to persons in the Americas.21 Lately, in Asia all political rights in the Universal Declaration of Human Rights are affirmed in the Asian Human Rights Declaration.22 Article 29 CRPD, in comparison to other regional and international human rights instruments, provides for an all-encompassing coverage of the right to political and public life, by determining that states parties ensure ‘effective and full participation’ of persons with disabilities in the public affairs of their respective societies.23 ‘Effective and full participation’ is not only recognized in article 29, but runs throughout the Convention and it is the first time it is recognized as such in an international human rights instrument.24 The Ad Hoc Committee, whilst collating suggestions from different stakeholders during the early days of the drafting process noted participation as a barrier to the inclusion of persons with disabilities.25 This created a general consensus that in order to achieve a 11 The ILO Convention concerning Indigenous and Tribal Peoples in Independent Countries (adopted 27 June 1989, entered into force 5 September 1991) ILO Convention No 169 (Indigenous and Tribal Peoples Convention). 12 ibid Arts 6 and 7 of Indigenous and Tribal Peoples Convention. 13 Convention on the Rights of the Child (adopted 20 November 1989) (CRC). 14 Art 12 CRC. 15 International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families (adopted 18 December 1990). 16 ibid Art 41. 17 Committee established under the terms of the International Convention on the Elimination of All Forms of Racial Discrimination (adopted on 21 December 1965, entered into force on 4 January 1965) (CERD). 18 Art 5 CERD. 19 African [Banjul] Charter on Human and Peoples’ Rights (adopted 27 June 1981, entered into force 21 October 1986) (1982) 21 ILM 58 Art 13. 20 Art 3 of the Protocol to the Convention for the Protection of Human Rights and Fundamental Freedoms (entered into force on 18 May 1954) provides for the right to free election. 21 American Convention on Human Rights Art 23. 22 Asian Human Rights Declaration (adopted 18 November 2012) para 10. 23 Art 29 (b) CRPD. 24 Marianne Schulze ‘Understanding The UN Convention On The Rights of Persons With Disabilities’ (July 2010), available at: . 25 UN, Ad Hoc Committee, second session ‘Compilation of Proposals for Elements of a Convention’ (15 January 2004), available at: . This document is comprised of the Compilation of proposals for a Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities UN Doc A/AC265/2003/CRP/13
du plessis and njau
Article 29
837
broad inclusive society, ‘effective and full participation of persons with disabilities’ in the political and public space must be attained. To this end, Ambassador Despouy specifically noted the need to address the rights of persons with disabilities based on the indivisibility of both civil and political rights.26 Further, responding to the need for ‘participation of persons with disabilities’, the Working Group was also composed of organizations with persons with disabilities, governmental representatives designated by regional groups and National Human Rights Institutions (NHRIs).27 In this group, which held its first session at the United Nations Headquarters in New York from 5 to 16 January 2004, all participants had an equal voice and collaborated equally in the production of the resulting text.28 The significance of the right to political and public life for persons with disabilities was highlighted by members of the Ad Hoc Committee in its inclusion in the proposed preamble contained in the first compilation of proposals for a Convention.29 The suggestions for the preamble by the Ad Hoc Committee, together with India, Mexico, Venezuela, and the experts group from Asian and Pacific region placed an emphasis on state parties obligations to eliminate obstacles and barriers that hinder persons with disabilities from enjoying their right to political life.30 India and Mexico went a step further and made a case for the right to political life in addressing the objectives of the Convention.31 The experts from the Asian and Pacific region proposed the participation of persons with disabilities in political and public life to be one of the objectives of the Convention.32 DPI Japan, a Japanese NGO, proposed the drafting of a provision for the right to political participation and prohibition against discrimination of persons with disabilities in this context.33 According to DPI Japan, discrimination regarding political participation meant inter alia restriction or loss of opportunity to cast a vote on the ground of disability, virtual limitation, or denial of political activities and violation of a right to vote by secret ballot.34 The government of Japan in its draft text proposed that state parties should take appropriate measures to ensure the rights to freedom of association, freedom of expression and freedom of political participation and ensure the full representation of persons with (16 to 27 June 2003) and the NGO contributions to the elements of a convention UN Doc A/AC265/2003/ CRP 13/Add 1 (16 to 27 June 2003). 26 Ad Hoc Committee, second session ‘The report on a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (3 July 2003), available at: . 27 UN, ‘Report of the Working Group to the Ad Hoc Committee’ (27 January 2004), available at: . 28 United Nations, Working Group (5 to 16 January 2004), available at: . 29 Ad Hoc Committee ‘Compilation of Proposals for Elements of a Convention’ (15 January 2004), available at: 11. 30 ibid 16. 31 ibid 29; under Art 1(f ) the object of this Convention is to encourage the autonomy of persons with disabilities and promote their full participation in economic, social, cultural, civil, and political life, under conditions of equality. 32 ibid 79; Art 3(1)(q) provides that: ‘The states parties to this Convention affirm that all human beings, including persons with disabilities, are born free and equal in dignity and rights and are entitled to the full and equal enjoyment of all human rights and fundamental freedoms.’ These rights and freedoms include the right to participate in political and public life (as recognized in Art 2 ICCPR and Art 7 CEDAW). 33 ibid 85 section 11 ‘Political Participation’. 34 ibid 86 section 11 (2) Prohibition against discrimination in political participation.
du plessis and njau
838
Participation in Political and Public Life
disabilities in decision-making.35 New Zealand suggested an outcome-based approach to be followed by the Ad Hoc Committee in the drafting of the Convention, instead of prescribing measures to be taken by states parties.36 New Zealand’s proposal was grounded on the premise that prescribed measures taken by states to ensure equal opportunities for the realization of the fundamental rights of people with disabilities are intimately related to local social infrastructure, which themselves are dependent on specific institutional, social, and political contexts. An example was provided, in that the Convention would need to consider the universal right to political participation.37 For people with disability this requires amongst others that all information related to the political process is available in accessible formats. This could be articulated as ‘ensuring public information is accessible to disabled people’.38 The African Regional Workshop as a NHRI proposed that the Convention should contain specific articles dealing with specialized areas and issues relating to political rights, which by the very nature of the context of disability require codification.39 To this end the African Regional Workshop recommended that the Convention should, in the spirit of article 25 ICCPR, provide for the participation of persons with disability in the conduct of public affairs and in the political process. From the European region, the European Disability Forum proposed that the Convention’s right to vote should include elements such as: removal of all legal barriers that prevent persons with disabilities from exercising their right to vote; measures to ensure that all polling stations and electoral systems are made accessible to persons with disabilities; as well as measures to ensure that all persons with disabilities can exercise their right to a secret vote (for instance, ballots in Braille).40 IDA member organizations41 highlighted in their text proposal that the reality faced by many disabled persons that are prevented from forming their own organizations or joining political parties necessitates the protection of their interests and ensure access to social organizations and existing political parties.42 IDA member organization also highlighted the lived reality of the majority of persons with visual impairments who are denied the right to secret voting, as well as institutionalized persons deemed incapable of voting.43 The right to ‘full’ participation as stipulated in article 29 CRPD was firstly tabled by the World Blind Union and the European Union in their draft text.44 According to the World Blind Union, the right to full participation encompasses the right of persons with disabilities to stand as candidates in elections, the right to join political parties and social organizations and the right to participate in all aspects of the life of the community on a basis of equality with other citizens.45 Article 8 of the EU draft text echoed the World Blind Union sentiments.46 The EU recommended that in order to secure ‘full and effective participation and inclusion in society on an equal basis for persons with disabilities, states parties should undertake in particular to promote an environment in which
36 37 38 39 40 ibid 89. ibid 90. ibid. ibid 91. ibid 93. ibid 95. IDA member organizations: Disabled Peoples’ International, Inclusión International, Rehabilitation International, World Blind Union, World Federation of the Deaf, World Federation of the Deaf-Blind, WNUSP. 42 UN, Ad Hoc Committee, ‘Compilation of Proposals for Elements of a Convention’ (15 January 2004), available at: 97. 43 ibid 98. 44 ibid 99; members of the Working Group presented their own respective drafts to the Convention. 45 46 ibid. ibid 119. 35 41
du plessis and njau
Article 29
839
persons with disabilities can effectively and fully participate in political and public life, directly or through freely chosen representatives’.47 The World Blind Union prescribed in their draft text the right to universal suffrage.48 In relation to the right to public life, the World Blind Union proposed that the Convention should provide for the right to freedom of association and the right to form organizations representing the specific interests of blind and partially sighted people.49 These sentiments were echoed by Mexico and Venezuela, which proposed that states parties should take measures to guarantee the exercise of the right to universal and secret suffrage of all persons with disabilities, as well as guarantee their freedom of association and to form their own organizations.50 The Coalition of Eastern Europe also made its voice heard during the negotiations and proposed that state parties should ensure that people with disabilities have the right to vote and receive adequate education in political affairs so that they are able to make a contribution to political life.51 The Coalition further proposed that an obligation should be placed upon state parties to consider that national and local parliamentary seats be reserved for people with disabilities in order to ensure their participation in political dialogue. The Chairperson of the Ad Hoc Committee in his draft text of the Convention also proposed that the right to participate in political and public life should be protected.52 During one of the sessions of the Working Group, DPI Africa recalled that persons with disabilities in South Africa could not vote in secret. They specifically referred to people with visual impairments and inaccessible ballot papers.53 DPI Africa used this lived experience of persons with disabilities as motivation for the need to include the right to ‘secret’ ballot and further proposed that the word ‘elect’ be replaced with ‘secret voting rights’.54 On 16 January 2004, the Working Group during its twentieth meeting, after taking into account all contributions submitted in advance during the meetings of the Working Group under the leadership of Don Mackay who chaired the group, endorsed the right to ‘participation in political and public life of persons with disabilities’ in article 18 of its draft text as a basis for further work in the Ad Hoc Committee.55 The Landmine Survivors Network was supportive of draft article 18 as it provided coverage of well- established rights of participation in political and public life, consistent with article 25 ibid. ibid 100; according to the World Blind Union the right to universal suffrage includes: the right and the facilities to vote in secret in all public elections; the right to the provision of the necessary instruments and technologies to enable the blind, partially sighted and deaf blind people to cast their vote independently and in secret; the right to a postal ballot in cases where restricted mobility makes it difficult to get to a polling station; and the right to the provision of accessible information about political parties’ and candidates’ manifestos. 49 50 ibid 101. ibid 127, 134. 51 ibid 107; this participation included providing persons with disabilities with the necessary tools and technologies to cast a ballot independently and secretly, as well as assisting in the right to be elected, particularly as this will give them an opportunity to voice the needs of people with disabilities. 52 ibid 111. 53 Ad Hoc Committee ‘Compilation of Proposals for Elements of a Convention’ (15 January 2004), available at: 120. 54 Ad Hoc Committee ‘Daily Summary related to Draft Article 18—Participation in Political and Public Life’ (9 January 2004), available at: . 55 UN, Ad Hoc Committee ‘Working Group—Report of the Working Group: Draft Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’, available at: Draft Article 18 on Participation in Political and Public Life. 47 48
du plessis and njau
840
Participation in Political and Public Life
ICCPR. Draft article 18 highlighted a fundamental right to which persons with disabilities are frequently denied. This extended not only to voting, but also to a wide range of decision-making processes where their interests are affected.56 Reflecting on the draft text of article 18, the World Blind Union were of the opinion that paragraph (a) thereof should clearly stipulate access to secret voting and the right to stand for election as fundamental rights in a separate paragraph.57 Of great significance was the recommendation made by the World Network of Users and Survivors of Psychiatry. They proposed that the word ‘guarantee’ be added to the chapeau of draft article 18 to ensure that the right of universal suffrage is protected for all persons with disabilities.58 During the third session of the Ad Hoc Committee, in the beginning of the negotiations, Namibia proposed amending paragraph (a) of draft article 18 by replacing the words ‘including’ with ‘guaranteeing’, and ‘citizens’ with ‘persons’. These suggestions were echoed by the rest of the Working Group, and subsequently amended, adopted and incorporated in the final draft of the CRPD.59 In order to reflect the importance of draft article 18, Ireland tabled a proposal to move this provision before draft article 8 (right to life).60 The term ‘citizen’ as opposed to ‘person’ was also a controversial issue on the agenda during the third session of the Ad Hoc Committee. Costa Rica supported by the EU proposed that draft article 18 (a) should refer specifically to ‘citizens with disabilities’, since the language draws from article 25 ICCPR, which specifically refers to ‘citizens’ as opposed to ‘persons’ in general.61 To this end China proposed that the term ‘public’ in draft article 18 (a) should be deleted, and the word ‘persons’ should be replaced with ‘citizens’, since in most countries only citizens enjoy political rights.62 With regard to the term ‘participation’, the People with Disability Australia Inc., along with the Australian National Association of Community Legal Centres and the Australian Federation of Disability Organizations, commended draft article 18(b)(ii), but recommended strengthening the aspect of participation on three levels. Firstly, they recommend that the provision should clarify that persons with disabilities are entitled to form and join ‘independent’ organizations, which is crucial to the right and integrity of participation of persons with disabilities in civil society. Secondly, they proposed that the provision should require state parties to recognize these independent organizations of persons with disabilities and provide for financial support. Thirdly, they recommended that the role of persons with disabilities organizations should be expanded to include those at international level, in order to ensure implementation of the Convention. In an effort to facilitate the participation of persons with disabilities, states parties should establish central disability policies by coordinating points at all levels of government.63 56 Ad Hoc Committee ‘Comments on the draft text, Draft Article 18: Participation in Political and Public Life’ (1 June 2004), available at: . 57 ibid; in order to broaden the focus and provide for all kinds of disability communications (blind, deaf, blind-deaf, learning disability). 58 ibid. 59 Ad Hoc Committee ‘Daily summary of discussions related to article 18’ (1 June 2004), available at: . 60 61 62 ibid. ibid. ibid. 63 ibid; the National Human Rights Institution (NHRI) also suggested for the expansion of the scope of the draft text ‘embrace the full spectrum of the right of association’, so that persons with disabilities can not only join organizations that are representative of them, but can also join other organizations.
du plessis and njau
Article 29
841
By the time the Ad Hoc Committee Working Group held its fourth session, there was consensus amongst all stakeholders that draft article 18 carried with it important principles of participation and inclusion, both key principles to the Convention.64 The draft text drawn from the forth session was refined and focused on placing a consistent obligation on states parties to ensure the right to vote for persons with disabilities and to provide positive measures guaranteeing the actual opportunity to exercise political rights.65 The Working Group retained the term ‘political and public life’ in the draft text as it broadly covered the exercise of legislative, judicial, executive, and administrative powers, as well as all aspects of public administration and formulation and implementation of policy at the international, national, regional, and local levels. The de jure and de facto enjoyment of the right to vote was highlighted in the redrafted article 18 (1) by extending the right to vote to all types of elections and referenda, as well as in instances where the right to be elected arose.66 Notably, particular issues such as secret ballots were excluded from the Working Group’s draft text, appreciating the value and the significance of member states respecting the secrecy of ballots and taking appropriate measures to create the opportunities for voters to cast their ballot without fear of being observed.67 Draft article 18 (2) (a) introduced an important aspect requiring states parties to ensure persons with disabilities have the right to participate fully and be represented in public policy formulation at all levels of government.68 This supported the facilitation of disability mainstreaming, inclusion in public policy-making processes and removal of barriers related to non-representation and involvement of persons with disabilities in the different levels of government. The chairperson’s report at the sixth session reflected the importance of draft article 18. There was general consensus amongst the members of the Working Group to strengthen the provisions therein and to reflect commitments found in the ICCPR and CEDAW.69 To this end a suggestion was made to strengthen the chapeau of paragraph (a) by replacing the opening phrase ‘actively promote an environment in which’ with the phrase ‘ensure that’.70 In the efforts to strengthen the chapeau of draft article 18, the Committee agreed to add the phrase ‘on an equal basis with others’ to ensure that no state party would be obliged to give non-citizens with disabilities a right to vote, if non-citizens in general would not be entitled to a right to vote.71 At the sixth session, the Committee further agreed with Canada’s suggestion to add the phrase ‘and materials’ to subparagraph (i) of paragraph (a) so as to clarify that all aspects
64 Ad Hoc Committee ‘Fourth Session: Comments, proposals and amendments submitted electronically’ (26 August 2004), available at: . 65 66 67 ibid. ibid. ibid. 68 Art 18(2)(a) ensures the right of persons with disabilities to participate in the conduct of public administration and public affairs, including the right to: (a) participate in the formulation and implementation of government policy and to hold public office and perform all public functions at all levels of government, including representation and participation in the work of international organizations. 69 Ad Hoc Committee ‘Article 29—Participation in political and public life, sixth session’ (12 August 2005), available at: . 70 ibid. 71 ibid; this was in line with Canada’s view on the need for a strong guarantee of the right and opportunity of persons with disabilities to participate in political and public life on an equal basis with others.
du plessis and njau
842
Participation in Political and Public Life
of voting and participation in political life should be made accessible to persons with disabilities.72 For the sake of consistency and in order to bring the various facets of draft article 18 in line with those of CEDAW there was general support to change the term ‘citizens’ to ‘persons’ in paragraph (a).73 In respect of paragraph (b) the Committee agreed with New Zealand and Argentina to strengthen its chapeau, in particular by referring to participation in ‘public affairs’ as opposed to a more limited ‘public administration’ as it was found in the Working Group’s draft text.74 Towards the end of the sixth session, the Chairperson supported Canada’s suggestion in respect of draft paragraph (b), mindful of the need to avoid interfering excessively in the affairs of political parties.75 The phrase to ‘form and join organisations of persons with disabilities’ was retained by the Committee to echo the importance of the disability rights movements and interactions of persons with disabilities with each other, which has significantly contributed to the political presence of persons with disabilities.76 During the seventh session, the Ad Hoc Committee tabled a working text of the International Convention on the Rights of Persons with Disabilities. It was in this Working Text where the phrase ‘participation in political and public life’ firstly found its way in article 29, as opposed to article 18 of the draft text of the Working Group.77 The EU proposed during the negotiations at the seventh session the deletion of the phrase ‘in accordance with national laws of general application’ from paragraph (a).78 The EU also proposed adding the word ‘effectively’ before ‘hold office’ and ‘facilitating the use of assistive and new technologies where appropriate’ at the end of the sentence in paragraph (a) (ii).79 These suggestions were supported by the Committee, and became part of the final text. The International Disability Caucus shared its concerns on the manner in which the right was then drafted. It felt that the lack of access is the only reason for depriving persons with disabilities of the right to vote.80 To this end it proposed that the last sentence of article 29 (a) be reworded as follows: ‘including the right and opportunity of persons with disability to vote and be elected inter alia by’.81 The inclusion of ‘inter alia’ underscored the fact that the voting initiatives as set out under subparagraph (i) and (ii) are only illustrative and not exhaustive. All members of the Ad Hoc Committee reached consensus at the eight session, and the draft was retained as it was tabled by the chairperson at the seventh session.82
72 ibid; the International Disability Caucus noted that political rights and more specifically the right to vote is meaningless to persons with disabilities unless they are provided through procedures and facilities accessible to persons with disabilities. Any other outcome constitutes a denial of electoral rights. 73 74 75 ibid. ibid. ibid. 76 Rule 18 of the Standard Rules on Equalization of Opportunities for persons with Disabilities adopted by UNGA Res 48/96 Annex (20 December 1993) underscores the significance and importance of organizations of persons with disabilities as consultative, representational and monitoring bodies. 77 Ad Hoc Committee ‘Article 29—Participation in political and public life, seventh session’ (25 January 2006), available at: . 78 79 ibid. ibid. 80 These concerns were duly incorporated in the Chair’s text of Art 29, available at: . 81 ibid. 82 Ad Hoc Committee (14–25 August 2006), available at: .
du plessis and njau
Article 29
843
3. Article 29 Chapeau In its 2011 thematic study, the Office of the UN High Commissioner for Human Rights (OHCHR) observed that the CRPD heralds a new era for the political participation of persons with disabilities.83 The first part of the provision (chapeau) clearly establishes the principle of equality in the enjoyment of political rights and guarantees to persons with disabilities their ‘political rights and the opportunity to enjoy them on an equal basis with others’. This is consistent with the purpose of the Convention84 to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities.85 The political rights of persons with disabilities are enshrined as an inalienable right ‘on an equal basis with others’ and the provision recognizes full inclusion in the ‘opportunity to enjoy’ political rights, valuing persons with disabilities as equal participants in exercising their political rights.86 Not only does the chapeau to article 29 recognize the political rights of persons with disabilities, it also requires states parties to guarantee the ‘opportunity to enjoy’ political rights.87 The ‘opportunity to enjoy’ gives rise to a duty on states parties to guarantee, through the adoption of positive measures, that all eligible persons have the actual opportunity to exercise their political rights.88 Article 29 CRPD extends its coverage beyond the basic right to vote and be elected to public office,89 and responds to all obstacles and/ or barriers to the effective enjoyment of the right of participation.90 It is for this reason than article 29 intersects with other provisions of the CRPD, such as article 4 (general obligations), article 5 (equality and non-discrimination), article 9 (accessibility), article 12 (equal recognition before the law), article 19 (living independently and being included in the community), and article 21 (freedom of expression and opinion, and access to information). Article 4 CRPD underpins the general obligations of state parties to include inter alia an undertaking to adopt new legislation and other administrative measures where needed to implement the Convention, to amend or repeal laws, customs, or practices that constitute discrimination on the basis of disability, refraining from any practices that are inconsistent with the Convention and mainstreaming disability into all relevant policies and programmes. States parties are also required to effectively consult with persons with disabilities and their representative organizations in the development and 83 ‘Thematic study by the Office of the United Nations High Commissioner for Human Rights on participation in political and public life by persons with disabilities’ UN Doc A/HRC/19/36 (11 December 2011) para 68. 84 ibid para 29; Art 1 CRPD. 85 CRPD Committee, ‘Communication No 4/2011 Zsolt Bujdosó and five others v Hungary, views adopted on 9 September 2013’ UN Doc CRPD/C/10/D/4/2011 (20 September 2013) para 5.5 (hereafter Zsolt). 86 The HRC adopted ‘General Comment No 25: The right to participate in public affairs, voting rights and the rights of equal access to public service (Article 25)’ UN Doc CCPR/C/21/Rev 1/Add 7 (12 July 1996), in which it pointed out in para 3 thereof that no distinctions are permitted between citizens in the enjoyment of these rights on a number of grounds, including race, colour, sex, language, religion, political or other opinion, property, birth ‘or other status’; Rachele Cera ‘Article 29 Participation in Political and Public Life’ in Valentina Della Rina, Rachele Cera, Guisepe Palmisano (eds), The United Nations Convention on the Rights of Persons with Disabilities A Commentary (Springer 2017) 527. 87 Similar to Art 25 ICCPR, Art 29 CRPD recognizes and protects the political rights of persons with disabilities; see also HRCtee, ‘General Comment No 25: The right to participate in public affairs, voting rights and the right of equal access to public service (Article 25)’ UN Doc CCPR/C/21/Rev 1/Add 7 (12 July 1996) para 1. 88 HRC UN Doc A/HRC/19/36 (n 83) para 15. 89 90 Cera ‘Article 29 Participation in Political and Public Life’ (n 86) 526. ibid 528.
du plessis and njau
844
Participation in Political and Public Life
implementation of laws and policies. Article 4(1)(i) CRPD further places an obligation on states parties to promote the training of professionals and staff working with persons with disabilities, which plays a pivotal role in bringing about effective participation in political and public life of persons with disabilities. The article 29 CRPD right to participation in the political and public life of persons with disabilities is effectively guaranteed when they are able to live independently and given access to participate fully in all aspects of life. Article 9 CRPD (accessibility) seeks this independence by directing states parties to take appropriate measures to ensure that persons with disabilities have access to the physical environment, transportation, information, and communications technologies and other services open to the public on an equal basis with others. Access to political and public life for the majority of persons with disabilities has been out of reach, predominantly due to lack of accessibility.91 By removing obstacles and/or barriers to accessibility by inter alia providing accessible voting stations, accessible political meetings (venues and materials produced by political parties) and by ensuring that persons with disabilities who are elected to public office have equal opportunities to carry out their mandate in a full and accessible manner, persons with disabilities will be able to enjoy and fully participate in their political and public life on an equal basis with others.92 The denial or restriction of legal capacity has been used to deny political participation, especially the right to vote. Article 12 CRPD (equal recognition before the law) is considered as a tool by which to empower persons with disabilities to make decisions for themselves.93 The article restores the legal capacity of persons with disabilities, enabling them to contribute to societies through their own decision-making and participation in political and public life. Article 19 CRPD provides for recognition of equal right of all persons with disabilities to live independently and be included in the community, with choices equal to others by inter alia ensuring that they have access to personal assistance necessary to support their living and inclusion in the community, eliminating isolation or segregation from society.94 This also extends to ensuring that community services and facilities of mainstream society are available on an equal basis to persons with disabilities and are responsive to 91 Janet E Lord et al ‘Human Rights: YES! Action and Advocacy on the Rights of Persons with Disabilities’ in Flowers N (ed), Human Rights Education Series Vol 6 (2nd edn, University of Minnesota Human Rights Center 2012), available at: 33; eg inaccessible voting stations and centres, party manifestos, and campaign materials in inaccessible formats, lack of accessible information about public meetings and consultations, political parties and voting and registration, lack of transportation to public meetings, registration and polling stations, lack of mobile mechanisms for persons who cannot leave their homes of who are currently residing in hospitals or institutions. Inaccessible voter education and campaign materials further limits voters with disabilities awareness of their voting rights, knowledge about the registration centres and information on candidates and their respective parties. According to Thomas Earle and Kristi Bushner ‘Effective Participation or Exclusion: The Voting Rights of People with Disabilities’ (2001–02) 11 Temple Pol & Civ Rts L Rev 327, 329, accessible voting stations solves two of the three categories of restrictions and barriers experienced by voters with disabilities: inaccessible polling places and inaccessible vote recording technologies. 92 Janet Lord, Michael Ashley Stein, and János Fiala–Butora ‘Facilitating an Equal Right to Vote for Persons with Disabilities’ (2014) 6 Human Rights Practice vol 121, eg it was reported in Quebec that election materials were adapted to alternative media such as Braille, audiocassette, and large print as well as in Quebec sign language which provided access to voter information. 93 Amita Dhanda ‘Legal Capacity in the Disability Rights Convention: Stranglehold of the Past or Lodestar for the Future?’ (2007) 34 Syracuse Journal of International Law and Commerce 429. 94 Art 19(b) CRPD.
du plessis and njau
Article 29
845
their needs.95 The right to live independently infers to the right to vote by secret ballot, the decision-making process, stand for elections, effectively hold office and perform all public functions at all levels of government. In public affairs, the right to live independently extend to participation in non–government organizations and the forming and joining of organization of persons with disabilities.96 Article 21 CRPD requires states parties to take all appropriate measures to ensure that persons with disabilities can exercise the right to freedom of expression and opinion, including the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice. Article 21 extends beyond enabling to express one’s own opinion, and places an obligation on states parties to ensure that the information upon which a decision and an opinion is made is accessible.97 The right to freedom of expression and opinion safeguards the formation of effective organizations of persons with disabilities as provided for under article 29 CRPD by enabling the members of these organizations to freely participate in the sharing and exchange of information and ideas.98 This empowers persons with disabilities running for public office to express their views on an equal basis with other candidates and voters with a disability to have access to campaign materials in accessible formats and technologies appropriate to different kinds of disabilities.
3.1 Exclusions or Restrictions in the Chapeau The chapeau does not permit exclusions or restrictions99 on the basis of disability with others in the enjoyment of these rights. The permission of exclusions will produce disenfranchisement of persons with disabilities.100 The Committee on the Rights of Persons with Disabilities (‘the Committee’), expressed concern regarding restrictions101 on the enjoyment102 of political rights in a number of concluding
96 Art 19(c) CRPD. Lord ‘Human Rights: YES!’ (n 91) 128. Art 21 (a) CRPD provides information intended for the general public to persons with disabilities in accessible formats and technologies appropriate to different kinds of disabilities in a timely manner and without additional cost. 98 Lord ‘Human Rights: YES!’ (n 91) 45. 99 See HRCtee General Comment No 25 (n 86) para 4, where the HRC states that ‘[t]he exercise of these rights by citizens may not be suspended or excluded except on grounds which are established by law and which are objective and reasonable’. 100 Zsolt (n 85) para 5.11. 101 CRPD Committee, ‘Concluding Observations on the initial report of Colombia’ UN Doc CRPD/C/ COL/CO/1 (29 September 2016) para 64; CRPD Committee, ‘Concluding Observations on the initial report of Uganda’ UN Doc CRPD/C/UGA/CO/1 (12 May 2016) para 56; ‘Concluding Observations on initial report of Thailand’ UN Doc CRPD/C/THA/CO/1 (12 May 2016) para 59; ‘Concluding Observations on the initial report of Gabon’ UN Doc CRPD/C/GAB/CO/1 (2 October 2015) para 62; ‘Concluding Observations on the initial report of Kenya’ UN Doc CRPD/C/KEN/CO/1 (30 September 2015) para 51; ‘Concluding Observations on the initial report of Brazil’ UN Doc CRPD/C/BRA/CO/1 (29 September 2015) para 53; ‘Concluding Observations on the initial report of Paraguay’ UN Doc CRPD/C/PRY/CO/1 (15 May 2013) para 69; ‘Concluding Observations on the initial report of Italy’ UN Doc CRPD/C/ITA/CO/1 (5 October 2106) para 73. 102 ‘Concluding Observations on the initial report of Ukraine’ UN Doc CRPD/C/UKR/CO/1 (2 October 2015) para 55; ‘Concluding Observations on the initial report of Mauritius’ UN Doc CRPD/C/MUS/C/ CO/1 (30 September 2015) para 39; ‘Concluding Observations on the initial report of the Czech Republic’ UN Doc CRPD/C/CZE/CO/1 (15 May 2015) para 58; ‘Concluding Observations on the initial report of Denmark’ UN Doc CRPD/C/DNK/CO/1 (20 October 2015) para 61; ‘Concluding Observations on the initial report of the European Union’ UN Doc CRPD/C/EU/CO/1 (2 October 2015) para 69. 95 97
du plessis and njau
846
Participation in Political and Public Life
observation on initial state reports and urged states parties to remove these restrictions.103 Similarly, the Committee did not foresee any reasonable restrictions or exception for any group of persons with disabilities in the enjoyment of their political rights in the individual complaint Zsolt Bujdosó and five others v Hungary104 under the Optional Protocol of the CRPD.105 Authors of the communication were six Hungarian nationals with intellectual disabilities who had been placed under partial or general guardianship pursuant to judicial decision. The authors, as an automatic consequence of their placement under guardianship, were removed from the electoral register, pursuant to the Constitution of the state party that was applicable at the time.106 Due to the direct application of the constitutional provision the authors were disenfranchised and prevented from participating in the parliamentary and municipal elections.107 The authors maintained that they were able to understand politics and participate in elections if they were allowed to do so.108 The Committee found that the imposition of restrictions or exceptions for any group of persons with disabilities in the enjoyment of their rights constitutes discrimination on the basis of disability, within the meaning of article 2 CRPD.109 The Committee found that the state party failed to comply with its obligations under article 29 CRPD, read alone and in conjunction with article 12 CRPD,110 and made recommendations to the state party to remedy the deletion of the authors’ names from the electoral register. The Committee confirmed that the state party was under an obligation to take measures to prevent similar violations in the future, including by considering repealing the applicable laws that were contrary to articles 12 and 29 CRPD.111 The chapeau of article 29 does not provide for any reasonable restrictions and/or exclusions of political rights112 and must therefore be applied without discrimination. Any exclusions or restriction of political rights of persons with disabilities on the basis of disability may constitute ‘discrimination on the basis of disability’ within the meaning of article 2 CRPD113 and is contrary to the Convention.114
3.2 Legal Capacity The ‘opportunity to enjoy’ political rights on ‘an equal basis with others’, is inextricably linked to the recognition of legal capacity of persons with disabilities.115 This is explained in the Committee’s first interpretive General Comment on article 12 CRPD.116 Without 103 ‘Concluding Observations on the initial report of Azerbaijan’ UN Doc CRPD/C/AZE/CO/1 (11 May 2014) para 45; ‘Concluding Observations on the initial report of Ethiopia’ UN Doc CRPD/C/ETH/CO/(3 November 2016) para 64. 104 Zsolt (n 85). 105 Zsolt (n 85) para 9.4; Heléne Combrinck ‘Everybody Counts: The Right to Vote of Persons with Psychosocial Disabilities in South Africa’ (2014) 2 African Disabilities Right Yearbook 89. 106 Art 70 para 5 of the 1949 Constitution of the Republic of Hungary provided that persons placed under total or partial guardianship did not have the right to vote. 107 108 Zsolt (n 85) para 2; Combrinck ‘Everybody Counts’ (n 105) 88. ibid. 109 110 111 ibid para 9.4. ibid paras 9.7 and 10. ibid para 10(b)(i). 112 ibid; however, the ‘Thematic study of the Office of the United Nations High Commissioner for Human Rights’ UN Doc A/HRC/19/36 (11 December 2011) para 8, notes that restrictions to the exercise of political rights are permissible, provided that they are established by law and based on objective and reasonable criteria. 113 HRCtee, UN Doc A/HRC/19/36 (11 December 2011) para 70; Zsolt (n 85) para 9.4. 114 ibid para 69. 115 CRPD Committee, ‘General Comment No 1 Article 12 Equal recognition before the law’ UN Doc CRPD/C/GC/1 (11 April 2014) para 31; Combrinck ‘Everybody Counts’ (n 105) 87. 116 ibid General Comment No 1, para 27, 31; Combrinck (n 105) 87.
du plessis and njau
Article 29
847
recognising a person with a disability as a person before the law, the ability to assert, exercise, and enforce rights is significantly compromised.117 The Committee explains in the general comment that legal capacity includes the capacity to be both a holder of rights and an actor under the law. To be a holder of rights entitles a person to full protection of his or her rights by legal systems.118 The Committee further notes that legal capacity and mental capacity are distinct concepts.119 Where legal capacity is the ability to hold rights and duties (legal standing) and to exercise those rights and duties (legal agency), mental capacity refers to the decision-making skills of a person.120 Mental capacity naturally varies from one person to another and may be different for a given person depending on many factors, including environmental and social factors.121 Most international legal instruments do not specify the distinction between mental and legal capacity. However, article 12 CRPD makes it clear that ‘unsoundedness of mind’ and other discriminatory labels are not legitimate reasons for the denial of legal capacity.122 This means that perceived or actual deficits in mental capacity must not be used as justification for denying legal capacity of persons with disability.123 The Committee notes that the concepts of mental and legal capacity should not be conflated so that where a person is considered to have impaired decision-making skills, often because of a cognitive or psychosocial disability, his or her legal capacity to make a particular decision is consequently removed.124 This means that article 12 does not permit discriminatory denial of legal capacity simply made on the diagnosis of an impairment (status approach), or where a person makes a decision that is considered to have negative consequences (outcome approach), or where a person’s decision-making skills are considered to be deficient (functional approach).125 The Committee affirms in the general comment that all persons with disabilities possess full legal capacity126 and that legal capacity is indispensable for the exercise of civil, political, economic, social, and cultural rights.127 Article 12 CRPD does not provide for any exception to the principle and only requires states parties to take appropriate measures ‘to provide access by persons with disabilities to the support they may require in exercising their legal capacity’.128 This means that practices whose purpose or effect violate article 12 must be abolished in order to ensure that full legal capacity is restored to persons with disabilities on an equal basis with others.129 The Committee confirmed in Zsolt Bujdosó and five others v Hungary that states parties have a positive duty to take the necessary measures to guarantee to persons with disabilities the actual exercise of their legal capacity under article 12(3) CRPD.130 The state party was under an obligation to enact 118 119 ibid para 31. ibid para 12. ibid para 13. The concept of mental capacity is highly controversial in and of itself. Mental capacity is not, as is commonly presented, an objective, scientific and naturally occurring phenomenon. Mental capacity is contingent on social and political contexts, as are the disciplines, professions and practices which play a dominant role in assessing mental capacity. 121 122 123 124 General Comment No 1 (n 115) para 13. ibid. ibid. ibid para 15. 125 ibid. This functional approach attempts to assess mental capacity and deny legal capacity accordingly. It is often based on whether a person can understand the nature and consequences of a decision and/or whether he or she can use or weigh the relevant information. This approach is flawed for two key reasons: (a) it is discriminatorily applied to people with disabilities; and (b) it presumes to be able to accurately assess the inner- workings of the human mind and, when the person does not pass the assessment, it then denies him or her a core human right—the right to equal recognition before the law. In all of those approaches, a person’s disability and/or decision-making skills are taken as legitimate grounds for denying his or her legal capacity and lowering his or her status as a person before the law. 126 127 128 129 ibid para 8. ibid. ibid para 68. ibid para 9. 130 Zsolt (n 85) para 9.5. 117 120
du plessis and njau
848
Participation in Political and Public Life
laws that recognize without any ‘capacity assessment’ the right to vote for all persons with disabilities including those with more need of support, and to provide for adequate assistance and reasonable accommodation in order for persons with disabilities to be able to exercise their political rights.131 In order to fully realize the equal recognition of legal capacity in all aspects of life,132 it is important to recognize the legal capacity of persons with disabilities in public and political life as provided for in article 29 CRPD.133 The Committee notes that the denial of legal capacity to persons with disabilities has led to persons with disabilities being deprived of many fundamental rights, including their right to vote (political rights).134 The denial or restriction of legal capacity of persons with disabilities has further been used to deny political participation,135 and therefore the ‘opportunity to enjoy’ their political rights on ‘an equal basis with others’. The Committee notes that a person’s decision-making ability cannot constitute justification for any exclusion of persons with disabilities from exercising their political rights.136 This was confirmed by the Committee in the Zsolt Bujdosó case where it recalled that under article 12(2) CRPD states parties must recognize and uphold the legal capacity of persons with disabilities ‘on an equal basis with others in all aspects of life’, including political life.137 The European Court of Human Rights has dealt with the right to vote in a number of judgments.138 In Kiss v Hungary139 a Hungarian citizen diagnosed with manic depression was placed under partial guardianship. Under article 70 (5) of the Hungarian Constitution, persons placed under total or partial guardianship lose their right to vote. The aim of the Hungarian constitutional measure was to ensure that only citizens capable of ‘assessing the consequences of their decisions and making conscious and judicious decisions should participate in public affairs’.140 This voting exclusion due to being placed under partial guardianship was contested in the Kiss case.141 The court held that this exclusion contravened the right to free elections in article 3 of Protocol 1 to the European Convention on Human Rights. The court rejecting the argument by the state party that automatically disenfranchise all persons under legal guardianship constituted a proportionate interference with the right to free elections.142 While the court’s conclusion regarding the imposition of an indiscriminate voting restriction of persons under partial guardianship is sound, the judgment may be criticized for its interpretation in that it leaves a margin for the state party to permissibly impose an ‘individualised judicial evaluation’.143 However, the question of the legitimacy of
Zsolt (n 85) para 10 (b)(ii). The CRPD Committee noted in General Comment No 1 (n 115) para 3, that there is a general misunderstanding of the exact scope of the obligations of state parties under Art 12 CRPD. The Committee affirms the general failure to understand that the human rights-based model of disability implies a shift from the substitute decision–making paradigm to one that is based on supported decision-making. 133 134 135 ibid para 48. ibid para 8. ibid para 48; Art 29 (a) CRPD. 136 137 General Comment No 1 (n 115) para 48. Zsolt (n 85) paras 9.4 and 9.5. 138 Combrinck ‘Everybody Counts’ (n 105) 91; Hirst v United Kingdom No 2 (GC) [2005] ECHR 681; Horvath and Kiss v Hungary Application No 38832/06, judgment (20 May 2010). 139 140 ibid. Kiss (n 138) para 38; Combrinck ‘Everybody Counts’ (n 113) 91. 141 Similar to the authors in Zsolts (n 85). 142 Cera ‘Article 29 Participation in Political and Public Life’ (n 86) 532. 143 Combrinck ‘Everybody Counts’ (n 105) 92; this indeed led to the amendment of the Hungarian Constitution that was examined by the CRPD Committee in Zsolt (n 85). 131 132
du plessis and njau
Article 29
849
disenfranchisement pursuant to an ‘individual judicial evaluation’ was left unresolved by the court.144 The African Commission on Human and Peoples’ rights had been robust in the interpretation of article 13(1) of the African Charter and its developing body of jurisprudence, emphasizing that it will not lightly sanction limitation of the right to political participation.145 In Purohit v The Gambia146 the Commission found the right provided for under article 13(1) of the African Charter to extend to ‘every citizen’, and its denial can only be justified by reason of legal incapacity or that the individual is not a citizen of a particular state. The Commission further reiterated that legal incapacity may not necessarily mean mental incapacity. The Commission used the example of an age limit for the legibility of its own citizens to participate in its government. The Commission found that legal incapacity, as a justification for denying the right under article 13(1) can only come into play by invoking provisions of the law that conform to internationally acceptable norms and standards.147
4. Paragraph (a) 4.1 Participation Participation in the broad sense is a theme that runs throughout the entire Convention148 and means that society should be organized in such a way as to enable all people to fully take part in every sphere of life.149 Full and effective ‘participation’ and inclusion of persons with disabilities in society is embodied as a general principle in article 3(c) CRPD and protected as a specific right in articles 1, 19, 24, 26, 29, and 30 CRPD. Article 29(a) CRPD sets out the right of persons with disabilities to participate in political and public life.150 The provision is grounded in the awareness that ‘participation in political and public life’ is not only an objective in itself but also a prerequisite for the effective enjoyment of other rights.151 Not only does paragraph (a) establish the right to ‘political and public life’,152 it also corresponds to the tailoring of political rights to address equality of opportunity of persons with disabilities in effective and full participation153 and inclusion in society. Through the opportunity to ‘effectively and fully’ exercise their right to political and public life, persons with disabilities assert individual autonomy, including the freedom to make choices and to be recognized as persons before the law.154 144 Cera ‘Article 29 Participation in Political and Public Life’ (n 86) 532; this was later clarified by the CoE Recommendations of 2011, under which all adult citizens with disabilities should have the right to vote and laws should be devoid of discriminatory provisions (CoE Committee of Ministers CM/Rec (2011) 14. 145 Combrinck ‘Everybody Counts’ (n 105) 94; Modise v Botswana (2000) AHRLR 30 (ACHPR 2000); Legal Resources Foundation v Zambia (2001) AHRLR 84 (ACHPR 2001). 146 147 (2003) AHRLR 96 (ACHPR 2003) (hereafter Purohit). Purohit para 75. 148 Preamble CRPD para (e), (k), (m), (y); Arts 1, 19, 24, 26, 30, and 34 CRPD. 149 150 UN HRC UN Doc A/HRC/19/36 (11 December 2011) para 20. ibid para 13. 151 Cera ‘Article 29 Participation in Political and Public Life’ (n 86) 527. 152 CEDAW Committee ‘General Comment No 23: Political and Public Life’ UN Doc A/52/38 (13 January 1997) para 5, for an explanation of the term ‘political and public life’. 153 Art 3(e) CRPD. 154 Zsolt (n 85) para 9.4; this is also consistent with other UN and regional human rights treaties protecting political participation, eg Art 3, Protocol No 1 of the European Convention For the Protection of Human Rights and Fundamental Freedoms, Art 23 of the American Convention on Human Rights, and Art 13 of the African (Banjul) Charter on Human and Peoples’ Rights. 154 Cera ‘Article 29 Participation in Political and Public Life’ (n 86) 527.
du plessis and njau
850
Participation in Political and Public Life
4.2 Participate Directly (Right to Vote) or through Representatives (to Be Elected) Article 21 UDHR proclaims ‘universal and equal suffrage’. Similarly, article 25 ICCPR provides that ‘every citizen shall have the right and the opportunity’ to vote ‘without reasonable restrictions’. Universal suffrage lies at the core of modern democracies and consists of the right of adult citizens to vote.155 Arguably, the right to vote is the most important political right156 to which persons with disabilities are entitled to on an equal basis with others. The OHCHR in its 2011 thematic study noted that article 29(a) CRPD establishes both ‘the right and opportunity to enjoy’ political rights through taking part in elections (right to vote) and be elected (as a representative in an election).157 The provision does not only extend to formal voting rights and the right to stand for election, but also requires that states parties ensure that persons with disabilities are truly able to make use of their right to vote158 and be elected. This sets a duty on states parties to guarantee though the adoption of positive measures, that all eligible persons have the opportunity to exercise their voting rights and to stand for elections, ensuring that barriers and/or obstacles to ‘effectively and fully’ participate in decision-making processes of ‘political and public life’ are removed.159 The adoption of positive measures by states parties include legislative reform to ensure that persons with disabilities can exercise their right to vote and participate in public life on an equal basis with others. The Committee recommended to Tunisia160 in its concluding observations of that country’s initial report that urgent legislative measures should be adopted to ensure that persons with disabilities, including persons who are under guardianship or trusteeship, can exercise their right to vote and participate in public life on an equal basis with others.161 The Committee therefore called for the reinstatement of the right to vote for persons who were deprived of that right.162 The Committee recommended to Spain163 in its concluding observations that all relevant legislation be reviewed to ensure that all persons with disabilities, regardless of their impairment, legal status, or place of residence, have the right to vote and participate in public life on an equal basis with others.164 Similarly, in Zsolt Bujdosó and five others v Hungary165 the Committee recommended that the state party was under an obligation to take measures to prevent similar violations to the right to vote in the future.166 This included amongst other the repealing of laws and/or amending laws contrary to articles 29 (read with article 12) of the CRPD167 and enacting laws that recognize the right to vote.168 The OHCHR in its 2011 thematic study noted that the adoption of positive measures by states parties from the specific perspective of disability further extends to the duty of states parties to ensure that barriers and/or obstacles to ‘effectively and fully’ participate in decision-making processes of ‘political and public life’ are removed.169 Article 29(a)(i) 156 UN Doc A/HRC/19/36 (11 December 2011) para 25. ibid para 7. 158 159 ibid paras 15 and 29. ibid para 15. ibid para 15. 160 CRPD Committee, ‘Concluding Observations on the initial report of Tunisia’ UN Doc CRPD/C/ TUN/1 (13 May 2011). 161 162 ibid para 35. ibid para 35. 163 CRPD Committee, ‘Concluding Observations on the initial report of Spain’ UN Doc CRPD/C/ESP/ 1 (19 October 2011). 164 165 166 See (n 162) para 37. Zsolt (n 85) para 9.4. ibid paras 9.4, 9.5 and 10(b). 167 168 169 ibid para 10(b)(i). ibid para 10(b)(ii). See (n 162) para 15. 155 157
du plessis and njau
Article 29
851
and (ii) CRPD lists a number of measures that states parties are required to take in order to ensure that persons with disabilities can exercise their political rights on an equal basis with other citizens.170 These measures inter alia address accessibility and assistance171 and include:172 (a) Ensuring that voting procedures, facilities and materials are appropriate, accessible and easy to understand and use; (b) Protecting the right of persons with disabilities to vote by secret ballot; and (c) Allowing assistance in voting, where necessary and at the express request of the person concerned, by a person of his or her own choice.
The measures provided for in article 29(a)(i) and (ii) are tailored to prevent disenfranchisement of persons with disabilities and violation of article 29 (read with article 12 and 5) CRPD. The measures are aimed at removing barriers and/or obstacles that prevent persons with disabilities from exercising their right to vote and participate in elections.173 These barriers range from a lack of awareness about the right to vote, to inaccessible information about elections and physical barriers at polling stations.174
5. Paragraph (a)(i) By providing not only for the right to vote, but also for the opportunity to vote, article 29(a)(i) CRPD imposes a duty on states parties to actively ensure that persons with disabilities are in fact given the opportunity to exercise their right to vote. The mandate requires states parties to take into account the entire political process surrounding the casting of the ballot in order to ensure that all dimensions of the voting process are accessible to persons with disabilities.175 Article 29(a)(i) therefore provides that states parties should ensure that ‘voting procedures, facilities and materials’ are accessible to persons with disabilities, and easy to understand and use.
5.1 Accessible Voting The provision in subparagraph (i) provides for states parties to respect, protect and fulfil their obligation in relation to the right to vote. In order to respect the right to vote of persons with disabilities, states parties should refrain from engaging in any act, custom, or practice that creates barriers and/or obstacles to the enjoyment of the right to participate in the electoral process. States parties must ensure that non-state or private actors do not violate the right of persons with disabilities to participate in electoral processes and take proactive measures to ensure enjoyment of the right to participate in said processes.176 The provision stipulates the positive measures that state parties must adopt in order to ensure that persons with disabilities can effectively participate in the voting process of their countries on an equal basis with other. These measures are tailored to the specific exigencies of disability and encompass barriers historically and contemporaneously encountered by persons with disabilities in the exercise of their right to vote. The measures not only expose the barriers and/or obstacles encountered by persons with disabilities in 171 172 ibid para 51. Art 29(a)(i) and (ii) CRPD. See (n 162) para 51. 174 ibid para 52. ibid. 175 Cera ‘Article 29 Participation in Political and Public Life’ (n 86) 534. 176 Lord ‘Human Rights: YES!’ (n 91) 31–43. 170 173
du plessis and njau
852
Participation in Political and Public Life
the exercise of their rights, but also address potential barriers and/or obstacles that may hinder the realisation of their right to participate or their right to vote.177 Barriers and/ or obstacles encountered include inaccessible information about elections, inaccessible polling places, lack of awareness of the right to vote and inaccessible voting technology.178 States parties have an obligation to adopt positive measures to overcome barriers and/or obstacles that de facto prevent persons with disabilities from exercising their right to vote in order to ensure their equal and effective enjoyment of the right. The OHCHR in its 2011 thematic study reported on actions states parties have taken to implement their obligations under the provision. These included the training of election officials on accessibility; outreach campaigns highlighting the right of persons with disabilities to vote and be elected; and making information on political affairs available in accessible formats.179 The Committee in its concluding observation to states parties initial reports provided guidance regarding their obligation to realize accessibility. The Committee recommended in its concluding observation to Ethiopia that, amongst others, the state party was obliged to provide: voter education and awareness; adopt legislative and practical measures to ensure that the electoral process is accessible to voters with disabilities, including voter registration, accessible polling centres and materials; and, inform persons with disabilities about their right to vote and provide financial support to organizations of persons with disabilities to conduct the election processes of persons with disabilities in a transparent manner.180 In its concluding observation to Thailand, the Committee called on the state party to ensure that all stages of its election are fully accessible, including political campaigns and related materials.181 The Committee recommended in its concluding observation to Sweden that information about elections be provided in accessible formats, that support at polling stations be made available, and that polling assistants be trained to accommodate persons with disabilities.182 In its concluding observation of the Cook Island the Committee also recommended that the state party use tools and instruments such as: Braille voting sheets, make ballot papers available to persons with disabilities via accessible technology and have sign language interpreters available.183 Similarly the Committee recommended in Zsolt Bujdosó and five others v Hungary that the state party should uphold and guarantee in practice the right to vote for persons with disabilities by ensuring that voting procedures, facilities, and materials are appropriate, accessible and easy to understand and use.184
177 Cera ‘Article 29 Participation in Political and Public Life’ (n 86) 525. This is in line with developments in international human rights law in the context of participation in decision-making for particularly disadvantaged groups. 178 179 See (n 162) para 52. ibid. 180 CRPD Committee, ‘Concluding Observations on the initial report of Uganda’ UN Doc CRPD/C/ UGA/CO/1 (12 May 2016) para 57. 181 CRPD Committee, ‘Concluding Observations on the initial report of Thailand’ UN Doc CRPD/C/ THA/CO/1 (12 May 2016) para 60. 182 CRPD Committee, ‘Concluding Observations on the initial report of Sweden’ UN Doc CRPD/C/ SWE/CO/1 (11 May 2014) paras 51 and 52. 183 CRPD Committee, ‘Concluding Observations on the initial report of the Cook Islands’ UN Doc CRPD/C/COK/CO/1 (15 May 2015) para 52. 184 Zsolt (n 85) para 10 (b)(iii).
du plessis and njau
Article 29
853
5.2 Accessibility Accessibility is included in the CRPD as one of its key underlying principles, a vital precondition for the effective and equal enjoyment of civil, political, economic, social, and cultural rights by persons with disabilities. The Committee in its second general interpretive comment on article 9 CRPD viewed accessibility not only in the context of equality and non-discrimination, but also as a way of investing in society and as an integral part of the sustainable development agenda.185 Article 9 CRPD reiterates the entitlement of ‘accessibility’ with its roots in existing human rights treaties, such as article 25(c) ICCPR on the right to equal access to public service and article 5 (f ) ICERD on the right of access to any place or service intended for public use.186 The Committee noted in its second general comment that ‘accessibility’ should be viewed as a disability-specific reaffirmation of the social aspect of the right of access.187 In order to fulfil their obligations, states parties have to provide accessibility as an essential part of the duty to respect, protect and fulfil equality rights. Accessibility should therefore be considered in the context of the right to access from the specific perspective of disability.188 Article 29(a)(i) CRPD requires states parties to guarantee accessibility of the electoral processes by providing disabled voters with disability-related accommodations, by implementing the principle of universal design in the design and exercise of their electoral process and providing other facilitative measures to enable their equal right to vote.189 The Committee noted in its second general comment that it is also important that political meetings and materials used and produced by political parties or individual candidates participating in public elections are accessible. If not, persons with disabilities are deprived of their right to participate in the political process in an equal manner.190 Failure to do so would be an infringement of not only the right of persons with disabilities to political participation, but also of the principles of equality and non-discrimination as enshrined in article 5 CRPD. Accordingly, it is asserted that the state party provide reasonable accommodation in the realization of rights, such as voting accommodation. The Committee noted in its second general interpretative comment that the duty to provide reasonable accommodation is an ex nunc duty, which means that it is enforceable from the moment an individual with an impairment needs it in a given situation. Reasonable accommodation can be used as a means of ensuring accessibility for an individual with a disability in a particular situation,191 such as the right to vote. Reasonable accommodation seeks to achieve individual justice in the sense that non-discrimination or equality is assured, taking the dignity, autonomy and choices of the individual into account.192 Article 29(a)(i) CRPD calls for the implementation of practices that improve access to voting and electoral participation. Failure to guarantee accessibility by means of reasonable accommodation and universal design, as defined in article 2 CRPD, would infringe
185 CRPD Committee, ‘General Comment No 2 Article 9 Accessibility’ UN Doc CRPD/C/GC/2 (22 May 2014) para 4. 186 187 188 ibid para 14. ibid para 4. ibid para 14. 189 Lord ‘Human Rights: YES!’ (n 91). 190 191 CRPD Committee, General Comment No 2 (n 185) para 43. ibid para 26. 192 ibid para 26.
du plessis and njau
854
Participation in Political and Public Life
the right to political participation of persons with disabilities and the principle of equality and non-discrimination (article 5 CRPD).193
5.3 Equality in Voting Procedures The general right to participate in political and public life is framed in terms of equality, which means that alternative forms of voting such as electronic voting, mobile polling stations, postal voting, voting by proxy and advance voting, should be used only in cases where it is not possible, or it is extremely difficult, for persons with disabilities to vote in polling stations like everyone else and not as a substitute to voting in a polling place.194
6. Paragraph (a)(ii) Article 29(a)(ii) CRPD determines that states parties must guarantee the right to vote and to be elected to disabled persons through protecting their right to vote by secret ballot without intimidation. States parties can ensure that persons with disabilities can effectively and fully do so through the assistance of a person of their choice, at the request of a disabled individual, including by ensuring facilitating the use of assistive and new technologies.195 The provision foresees a core procedural guarantee for implementing political rights, namely the principle of voting in secret.196 The provision not only protects the right to vote in secrecy, but also ensures that states parties take appropriate measures to create the opportunity for voters with a disability to cast their ballot without fear of being intimidated or observed.197 The Committee recommended in its first interpretative general comment on article 12 CRPD (equal recognition before the law) that states parties have to guarantee the right of persons with disabilities to stand for election, to hold office effectively and to perform all public functions at all levels of government, with reasonable accommodation and support, where desired.198 States parties have an obligation to protect and promote the right of persons with disabilities to access the support of their choice in voting by secret ballot and to participate in all elections and referendums without discrimination.199 In order to ensure that persons with disabilities are able to exercise their right to stand for elections, to effectively hold office and perform all public functions at all levels of government, states parties have to adopt all appropriate measures, including the use of assistive and new technologies, to guarantee that persons with disabilities can effectively and fully participate in political and public life on an equal basis with others.200 The OHCHR in its 2011 thematic study noted that appropriate measures expected of states include ensuring that persons with disabilities can vote in private at polling stations, facilitating the use of assistive voting devices to enable persons with visual impairments to vote independently, or allowing persons with disabilities to be assisted in voting by a person of their choice and stand for elections.201 In facilitating the use of assistive and new 194 See (n 162) para 52. ibid para 58. UN HRC ‘Report of the Special Rapporteur on the rights of persons with disabilities’ UN Doc A/HRC/ 31/62 (12 January 2016) para 19. 196 197 Cera ‘Article 29 Participation in Political and Public Life’ (n 86) 534. ibid. 198 199 CRPD Committee, General Comment No 1 (n 115) paras 48 and 49. ibid para 48. 200 201 See (n 162) para 45. ibid para 15. 193 195
du plessis and njau
Article 29
855
technologies, where appropriate, states parties must promote full and equal participation in society. The assistive and new technologies should be designed and produced in such a way that ensures accessibility in order to promote full and effective participation on an equal basis with others.202 In this respect, the Committee made a number of recommendations relating to article 29(a)(ii) CRPD in its concluding observations to states parties in response to initial reports. The Committee noted with concern in its concluding observations that the initial report of Mongolia203 contained no specific references to either persons with disabilities or to assistive or support measures in accommodating persons with visual, hearing or mobility impairments in that country’s election law.204 In its concluding observations on Turkmenistan205 the Committee similarly recommended that the state party should provide support for persons with disabilities to be candidates in national and local elections.206 In its concluding observations on the Cook Islands207 the Committee expressed its concern with the state party’s systematic failure to protect the right to vote in private at polling stations.208 The Committee recommended that the state party repeal provisions of its electoral legislation209 to ensure that all persons with disabilities, irrespective of their disability, can vote in private at polling stations and stand for election. The Committee further recommended that the state party ensure access to polling booths for persons with disabilities, supply tools, and instruments such as Braille voting sheets, make the ballot papers available to persons with disabilities via accessible technology, and have available sign language interpreters, so that persons with disabilities can vote in all elections, independently and secretly and, if needed, with a support person of their own choice.210 In its concluding observations on Ethiopia211 the Committee expressed its concern that persons with disabilities are not guaranteed support to exercise their right to vote in law and in practice.212 In its concluding observations on Italy213 the Committee was concerned about the inability of persons with disabilities to vote wherever they choose due to legal restrictions imposed on them. The Committee was concerned, amongst others, that the regulation on assistance for persons with disabilities in order to cast their vote was not consistent with the Convention.214 In that light, the Committee recommended that Italy should provide support and facilitation to persons with disabilities to ensure the exercise of the right to vote by repealing part of the Constitution and recommended the repeal of the law that restricted persons with disabilities to vote at polling stations of their choice. The Committee further recommended that the State party harmonize its regulatory framework on assistance for persons with disabilities to exercise their right to vote in CRPD Committee, General Comment No 2 (n 185) para 22. CRPD Committee, ‘Concluding Observations on the initial report of Mongolia’ UN Doc CRPD/C/ MNG/CO/1 (13 May 2015). 204 The state party’s ‘Great Khural’s election law’ UN Doc CRPD/C/MNG/CO/1 (13 May 2015) para 44. 205 CRPD Committee, ‘Concluding Observations on the initial report of Turkmenistan’ UN Doc CRPD/ C/TKM/CO/1 (13 May 2015). 206 207 ibid para 45. Concluding Observations on the initial report of Cook Islands (n 183). 208 209 ibid para 51. The Cook Island’s Electoral Act 2004. 210 ‘Concluding Observations on the initial report of Cook Islands’ (n 183) para 52. 211 CRPD Committee, ‘Concluding Observations on the initial report of Ethiopia’ UN Doc CRPD/C/ ETH/CO/1 (3 November 2016). 212 ibid para 63. 213 CRPD Committee, ‘Concluding Observations on the initial report of Italy’ UN Doc CRPD/C/ITA/ CO/1 (5 October 2016). 214 ibid para 73. 202 203
du plessis and njau
856
Participation in Political and Public Life
compliance with the Convention.215 The Committee expressed concern in its concluding observations on the United Arab Emirates216 regarding the Constitutional and Civil Code provisions that deny the right to exercise civil and political rights, including the right to vote and stand for election, to persons deemed incompetent by reason of ‘imbecility or insanity’ or restricted in the exercise of their legal capacity. The Committee further expressed their concern regarding legislation on voter assistance provisions for persons with disabilities, arguing that the legislation in question violated the secrecy of voting, and the lack of information on measures taken to promote the participation of persons with disabilities in civic and political processes.217 The Committee recommended that the state party repeal the Constitutional and Civil Code provisions, and other laws that deny the right to exercise civil and political rights on the basis of disability or restriction of legal capacity. The Committee further recommended that the state party ensure through legislative and other measures, accessibility to ballots, election materials and polling stations and also ensure that, when voting, persons with disabilities are allowed assistance from a person of their own choice, and take measures to promote the participation of persons with disabilities in civic and political processes.218 In its concluding observations on Uganda219 the Committee recommended voter education and awareness to persons with disabilities and the adoption of measures to ensure that the electoral process is accessible to voters with disabilities, including voter registration, accessible polling centres and materials and assistance to vote from persons of their choice.220 The Committee recommended in its concluding observations on Lithuania221 that the state party, in close collaboration with organizations of persons with disabilities, expedite the parliamentary approval of election laws to ensure the legally enforceable right of persons with disabilities to vote and have access to, among others, accessible ballots, election materials and polling stations, and the provision of freely chosen, adequate and necessary assistance in order to facilitate voting by all persons, regardless of impairment.222 The Committee, in its concluding observations on Qatar was concerned that legislation on voter assistance provisions for persons with disabilities violated the secrecy of the vote.223 The state party’s rules for the election of the central municipal council provided that when a voter is unable to cast his vote he may communicate his choice orally in a voice audible only to the members of the committee, 224 and that candidates may designate in writing a voter in their constituency to enter polling stations on their behalf.225 The Committee recommended
215 ibid para 74; of further importance is para 84 where the Committee requested Italy to submit within twelve months, in accordance with Art 35(2) CRPD, information in writing on the measures taken to implement the Committee’s recommendations set out in paragraphs 10 and 82 above, regarding the adoption of a definition of reasonable accommodation and implementing an independent monitoring mechanism, respectively. 216 CRPD Committee, ‘Concluding Observations on the initial report of United Arab Emirates’ UN Doc CRPD/C/ARE/CO/1 (2 October 2016). 217 218 ibid para 53. ibid para 54. 219 CRPD Committee, ‘Concluding Observations on the initial report of Uganda’ UN Doc CRPD/C/ UGA/CO/1 (12 May 2016). 220 ibid para 57 (b). 221 CRPD Committee, ‘Concluding Observations on the initial report of Lithuania’ UN Doc CRPD/C/ LTU/CO/1 (10 May 2016). 222 ibid para 58 (d). 223 CRPD Committee, ‘Concluding Observations of the initial report of Qatar’ UN Doc CRPD/C/QAT/ CO/1 (2 October 2015) para 51. 224 ‘Initial report of Qatar’ UN Doc CRPD/C/QAT/1 (9 July 2014) para 208. 225 ibid para 210.
du plessis and njau
Article 29
857
that the state party ensure, through legislative and other measures, the accessibility of ballots and election materials and polling stations and that, when voting, persons with disabilities are allowed assistance from a person of their own choice.226 In its concluding observations on New Zealand the Committee noted that under that country’s electoral legislation persons who are blind or vision-impaired may receive the assistance of an official to cast their vote in an election,227 but recommended that the state party consider the introduction of accessible electronic voting to enable persons with disabilities to cast their votes in a truly secret manner.228 The Committee recommended in its concluding observations on Sweden229 that the mechanisms put in place to facilitate voting assistance are developed in close consultation with organizations of persons with disabilities in order to suit their needs.230 In its concluding observations on Peru231 the Committee was concerned with the fact that persons in institutions have not been able to exercise their right to vote because of, amongst others, the absence of special assistance or the distance from the polling station.232 Similarly, the Committee confirmed in Zsolt Bujdosó and five others v Hungary that the state party was under an obligation to take measures to prevent violations by, amongst others, providing support, adequate assistance and reasonable accommodation in order for persons with disabilities to be able to exercise their political rights.233 The Committee confirmed that Hungary was under the obligation to uphold and guarantee in practice the right to vote for persons with disabilities, on an equal basis with others, by ensuring that voting procedures, facilities and materials are appropriate, accessible and easy to understand and use, and where necessary, at their request, allowing assistance in voting by a person of their choice.234
7. Paragraph (a)(iii) Article 29(a)(iii) CRPD guarantees the free expression of the will of persons with disabilities as electors, and where necessary, at the request of a person with a disability, allow for assistance in voting by a person of their own choice. The provision introduces the concept of assistance voting by a person of choice to facilitate, where necessary the exercise of the entitlement.235 In its first interpretive general comment the Committee highlighted that article 12 CRPD underpins the construction of the provisions contained in article 29(a)(iii) CRPD. Under article 12(3) states parties are required to acknowledge the legal capacity of persons with disabilities and take appropriate measures to provide ‘access to persons with disabilities to the support they may require in exercising their legal capacity’. This includes providing support to persons with disabilities who experience difficulties when voting, enabling them to express their will and preferences in elections.236 In addition, CRPD Committee, Concluding Observations on Initial Report of Qatar (n 223) para 52. CRPD Committee, ‘Concluding Observations on initial report of New Zealand’ UN Doc CRPD/C/ NZL/CO/1 (30 October 2014) para 61. 228 229 ibid para 62. ‘Concluding observation on initial report of Sweden’. 230 ibid para 52. 231 CRPD Committee, ‘Concluding Observations on initial report of Peru’ UN Doc CRPD/C/PER/CO/ 1 (15 May 2012). 232 233 234 ibid para 44 (c). Zsolt (n 85) para 10 (ii). ibid para 10 (iii). 235 Cera ‘Article 29 Participation in Political and Public Life’ (n 86) 534. 236 CRPD Committee, General Comment No 1 (n 115) paras 8, 29 (f ) and 31. 226 227
du plessis and njau
858
Participation in Political and Public Life
article 12(4) provides that states parties must provide appropriate and effective safeguards to prevent abuse in supported decision-making. The Committee provided some guidance in the first interpretative general comment on how states parties can guarantee the free expression of will and the preferences of persons with disabilities in exercising their legal capacity with regard to the supported decision-making paradigm. These guidelines are instructive in unpacking state parties’ obligations to guarantee free expression of the will of persons with disabilities in the context of voting.237 States parties are required to establish, legally recognize and provide access for persons with disabilities to a broad range of support to enable them to exercise their right to vote. The support measures must be available to all persons with disability with no distinction as to the severity, nature of impairment, mental capacity or difference in communication on an equal basis. Supports to exercise the right to vote must be based on the will and preference of the individual and not on the perceived best interest of the person. States parties have an obligation to recognize the support chosen by an individual in the exercise of the right to vote, and create measures to ensure and safeguard that the person assisting in the voting process acts in accordance with the will and preference of the individual. State parties further have an obligation to facilitate the creation of such supports, especially for people who have been previously excluded from society and therefore do not have access to naturally occurring supports in the community. Furthermore, the lack of financial resources must not be a barrier for access to support measures. States parties have to ensure that the supports are available at little or no cost to the person with disability who wishes to use them.238
7.1 Assistance in Voting One of the contentious issues during the negotiation phase of the Convention concerned assistance in voting. Concerns were raised that persons with disabilities might receive inappropriate assistance, be subjected to undue influence or manipulation during the voting process, resulting in proxy voting on behalf of persons with disabilities.239 The degree of assistance afforded to persons with disabilities was also a subject of heated debate during the negotiation.240 The Convention attempts to address these concerns in the wording and formulation of article 29(a)(iii) CRPD. The Convention specifies that persons with disabilities should be ‘allowed assistance’ to vote when they ‘request’ assistance. This means that not all persons with disabilities require assistance to vote, and more importantly, states parties should not compel persons with disabilities to be assisted during voting. ‘Assistance in voting’ is therefore not mandatory, but at the discretion of the individual desiring support during the exercising of the right to vote. The person providing assistance and/or support is only an enabling measure in order to exercise and enjoy the right to vote. The assistance provided by ‘a person of their own choice’ needs to be tailored to the will, preference and needs of the person with the disability, thereby respecting the individual autonomy and capacity of the persons with disabilities.
ibid paras 18, 22, 26, 27, 29, and 48. ibid paras 15–20, 22, 24, 26–30, and 34, 39, 47, 49 and 50(b)–52. 239 Combrinck ‘Everybody Counts’ (n 105) 81. 240 Cera ‘Article 29 Participation in Political and Public Life’ (n 86) 535. 237 238
du plessis and njau
Article 29
859
7.2 Article 29(a) Exclusion and/or Restrictions to the Right to Vote and Be Elected Article 29(a) requires states parties to guarantee to persons with disabilities the equal and effective enjoyment of political rights, including the right to vote and be elected. The provision does not foresee any reasonable restriction, nor does it allow for any exceptions for any group of persons with disabilities.241 The provision establishes the right to vote and be elected without any exception and aims to address obstacles and/or barriers encountered by persons with disabilities in the enjoyment of such rights.242 The obstacles and/or barriers that persons with disabilities may encounter in exercising their right to vote fall into three categories. These are firstly, inaccessible polling places; secondly inaccessible vote recording technologies; and lastly disability-based voting restrictions,243 which affect mostly persons with psychosocial and/or intellectual disabilities.244 It is noteworthy that the OHCHR in its 2011 thematic study observed that the ‘legal landscape changed dramatically since the adoption of the General Comment’ by the UN Human Rights Committee relating to article 25 ICCPR.245 The thematic study noted that it may be argued that the majority of voting restrictions are no longer compatible with the prohibition of discrimination, in particular with regard to limitations concerning the right to vote and stand for election on the basis of psychosocial and/ or intellectual disabilities.246 The thematic study contended that restrictions on political rights, including the right to vote, is not based on disability itself, but rather on a lack of legal capacity. Restrictions and/or exclusions to political rights, including the right to vote in the absence of lack of legal capacity would be, inconsistent with the provisions of the CRPD. The Convention recognizes in article 12(2) CRPD that persons with disabilities enjoy legal capacity ‘on an equal basis with others in all aspects of life’. Article 12(2) does not provide for any exceptions, but article 12(3) does require from states parties to take appropriate measures to ‘provide access by persons with disabilities to the support they may require in exercising their legal capacity’.247 Article 29(a) CRPD similarly does not provide for any restrictions and/or exceptions for any group of persons with disabilities, including persons with psychosocial or intellectual disabilities in the equal and effective enjoyment of their political rights, including their right to vote and to be elected. The Committee, in dealing with issues of disenfranchisement of persons with disabilities through its interpreting and monitoring activities, removed any doubt on the permissibility of restrictions and/or exclusions on the basis of psychosocial and/or intellectual disabilities.248 The Committee in its concluding observations on the initial report of Tunisia249 recommended the urgent adoption of legislative measures to ensure that persons with disabilities, including persons under guardianship or trusteeship, can exercise their right to vote and participate in public life, on an equal basis with others.250 In its concluding See (n 162) para 29. 243 Cera ‘Article 29 Participation in Political and Public Life’ (n 86) 530. ibid. 244 Combrinck ‘Everybody Counts’ (n 105) 78. 245 See ‘General Comment No 25: The Rights to Participate in Public Affairs, Voting Rights and the Right of Equal Access to Public Service’ UN Doc CCPR/C/21/Rev1/Add7 (12 July 1996) para 33. 246 247 See (n 162) para 28. ibid para 30. 248 Cera ‘Article 29 Participation in Political and Public Life’ (n 86) 532. 249 CRPD Committee, ‘Concluding Observations on the initial report of Tunisia’ UN Doc CRPD/C/ TUN/1 (13 May 2011). 250 ibid para 35. 241 242
du plessis and njau
860
Participation in Political and Public Life
observations on Spain,251 the Committee made the link between deprivation of legal capacity and the right to vote more explicitly. The Committee expressed its concern that the right to vote of persons with intellectual and/or psychosocial disabilities can be restricted if the person concerned has been deprived of his or her legal capacity, or has been placed in an institution.252 The Committee recommended that all relevant legislation be reviewed to ensure that all persons with disabilities, regardless of their impairment, legal status, or place of residence, have the right to vote and participate in public life on an equal basis with others.253 The OHCHR observed in its 2011 thematic study that deprivation of legal capacity based on a perceived or actual mental illness or psychosocial disability may constitute a violation of the obligations set out in article 12 CRPD.254 Any exclusion or restriction of the right to vote on the basis of a perceived or actual psychosocial or intellectual disability would constitute ‘discrimination on the basis of disability’ within the meaning of article 2 CRPD.255 The thematic study further referred to developments in the jurisprudence of international256 and regional human rights mechanisms and bodies,257 which support the argument that restrictions of the right to vote and stand for election on the basis of a psychosocial and/or intellectual disability are not consistent with modern human rights standards on disability.258 In this regard the Committee held in Zsolt Bujdosó and five others v Hungary that denying the right to vote to a person on the basis of psychosocial and/or intellectual disability, even when denial is based on an individualized assessment of capacity, violates article 29 CRPD.259 The report of the Special Rapporteur on the rights of persons with disabilities similarly stated that persons with disabilities must enjoy the right to vote and to be elected on an equal basis with others. The report noted that no one should be restricted, either in law or in practice, in the enjoyment of political rights on grounds of disability.260
8. Paragraph (b) Effective and meaningful participation of persons with disabilities is at the core of the CRPD. This was demonstrated by the unprecedented involvement of civil society, particularly persons with disabilities and their representative organizations, in the processes of drafting and negotiating the Convention.261 It is important to note that article 29(b) CRPD intersects with the general obligations of article 4 CRPD which provides for the creation of an environment in which person with disabilities can effectively and fully participate in the conduct of public affairs by forming and joining organizations of persons with disabilities to represent them at national and local levels. The formation and joining of organization of persons with disabilities, as articulated in article 29(b) gives voice and life to the states’ parties obligation in article 4(3) CRPD to closely consult with and 251 CRPD Committee, ‘Concluding Observations on the initial report of Spain’ UN Doc CRPD/C/ESP/ CO/1 (19 October 2011). 252 See (n 162) para 36. 253 ‘Concluding Observation on initial report of Spain’ (n 251) para 48. 254 255 256 See (n 162) para 30. ibid para 29. Zsolt (n 85) para 9.4. 257 258 259 Kiss (n 146). See (n 162) para 31. Zsolt (n 85) para 9.4. 260 UN HRC, ‘Report of the Special Rapporteur on the rights of persons with disabilities’ UN Doc A/HRC/ 31/62 (12 January 2016) para 19. 261 ibid para 16.
du plessis and njau
Article 29
861
actively involve persons with disabilities through their representative organizations, such disabled person’s organizations (DPOs), in matters affecting them.
8.1 Effective and Fully Participate in the Conduct of Public Affairs Article 29(b) CRPD actively promotes an environment in which persons with disabilities can effectively and fully participate in the conduct of public affairs without discrimination and on an equal basis with others. States parties must encourage the participation of persons with disabilities in public affairs. The OHCHR in its 2011 thematic study referred to article 25 (a) ICCPR and ‘participation in the conduct of public affairs’ that covers all aspects of public administration, and the formulation and implementation of policy at international, national, regional, and local levels.262 The right to participate in the conduct of public affairs can be exercised directly or through freely chosen representatives.263 Citizens participate directly in the ‘conduct of public affairs’ when they exercise power as members of legislative or executive bodies, when they choose or change their constitution or decide public issues through a referendum or another electoral process. Participation through freely chosen representatives is exercised mainly through the exercise of voting rights.264 The Special Rapporteur on the rights of persons with disabilities also noted that persons with disabilities have the right to participate in the conduct of public affairs.265 The report also distinguished between participation exercised directly from that exercisable indirectly. 266 The report explained that direct participation entails deciding on public issues, as well as taking part in popular assemblies and other consultative spaces established by the state to engage with its citizens.267 Indirect participation in public affairs can be exercised by voting freely to elect representatives and through membership in civil society organizations (CSOs).268 Article 29(b) CRPD broadens the significance of participation of persons with disabilities in decision-making beyond the scope of political rights, ensuring that persons with disabilities can express their views in all matters that affect them.269 In broad terms, the provision requires states parties to take appropriate steps to promote an enabling environment in which persons with disabilities can ‘effectively and fully participate in political and public life’.270 The concept of ‘participation in the conduct of public affairs’ includes all aspects of public administration and policymaking and relates to the exercise of political power, including legislative, executive and administrative powers.271 Participation in public affairs also covers participation in public debates, dialogues, as well as peaceful demonstrations and meetings.272 263 264 See (n 162) para 9. ibid para 10; Art 29(a) CRPD. See (n 162) para 10. HRC UN Doc A/HRC/31/62 (12 January 2016) para 22; UN HRC UN CCPR/C/21/Rev1/Add7 (12 July 1996) paras 8 and 25. 266 Art 29(a)(i) and (ii) CRPD; UN HRC UN Doc A/HRC/31/62 (12 January 2016) para 23. 267 See (n 162) para 23. 268 ‘CSOs’ comprise a wide range of non-state and voluntary organizations, associations, networks, and groups formed by people within the social sphere of civil society, including representative organizations of persons with disabilities—see the UN HRC UN Doc A/HRC/31/62 (12 January 2016) para 23, available at: 269 270 UN HRC UN Doc A/HRC/31/62 (12 January 2016) para 18. See (n 162) para 17. 271 UN HRC UN Doc A/HRC/31/62 (12 January 2016) para 22; UN HRC UN CCPR/C/21/Rev1/Add7 (12 July 1996) paras 8 and 25. 272 See (n 162) para 9. 262 265
du plessis and njau
862
Participation in Political and Public Life
9. Paragraph (b)(i) and (ii) According to the Special Rapporteur on the rights of persons with disabilities, states parties have an obligation under international human rights law to closely consult with, and actively involve persons with disabilities in policy-making, through their representative organizations. The international community has—since the adoption in 1993 of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities— consistently acknowledged that policymaking and programme implementation in relation to the rights of persons with disabilities is to be undertaken in close consultation with, and with the involvement of, representative organizations of persons with disabilities.273 Accordingly, the CRPD clearly provides for the involvement and full participation of persons with disabilities and their representative organizations in monitoring its implementation, as well as in other decision-making processes, including legislative, administrative, and other matters, that affect any of their rights.274 To facilitate effective participation of persons with disabilities in the conduct of public affairs, article 29(b)(ii) CRPD imposes a duty on states parties to adopt positive measures to encourage the active involvement of persons with disabilities in non-governmental organizations and associations concerned with public and political life, and in political parties, as well as forming and joining organizations of persons with disabilities (DPOs) at the local, national, regional and international levels.275 The provision therefore establishes the right to join and form representative organizations of persons with disabilities,276 recognizing the right of persons with disabilities to form and join DPOs for the purpose of their representation at all levels.277 To this end, the provision establishes that states parties must create an enabling environment for the establishment and functioning of representative organizations of persons with disabilities.278 The OHCHR in its thematic study referred to: a) measures that states parties should adopt to facilitate the participation of persons with different forms of impairments; b) the procedures followed to enable the participation of persons with disabilities through their representative organizations in decision-making processes; and c) the measures adopted to ensure that such participation is full, effective and meaningful, which may vary from one country to the other.279 The report further noted that states parties are also required to facilitate the involvement and ensure the full participation of civil society, in particular persons with disabilities and their representative organizations, in monitoring the implementation of the Convention at the national level.280
273 UN HRC UN Doc A/HRC/31/62 (12 January 2016) para 24; and the Committee on Economic, Social and Cultural Rights ‘General Comment No 5 (1994) on persons with disabilities’ UN Doc E/1995/22 (9 December 1994) para 14. 274 275 UN HRC UN Doc A/HRC/31/62 (12 January 2016) para 24. See (n 162) para 19. 276 277 Cera ‘Article 29 Participation in Political and Public Life’ (n 86) 536. ibid 537. 278 ibid 538. 279 UN HRC UN Doc A/HRC/19/36 (11 December 2011) para 59; see also para 60 of the thematic report (n 83) in which the OHCHR refers to ‘measures to support the inclusion of persons with disabilities in political and public life [all of which] are part of national strategies or programmes on disability. Some countries allocate financial resources to national disability organizations to promote their participation in the activities of relevant government bodies and advisory boards, and have established national councils on disability or similar consultative bodies to provide advice to the government on issues relating to disability. In some countries, for example in Norway, there are also local and regional advisory councils on disability issues.’. 280 In accordance with Art 33 (3) CRPD; see (n162) para 61.
du plessis and njau
Article 30 Participation in Cultural Life, Recreation, Leisure, and Sport . States Parties recognize the right of per1 sons with disabilities to take part on an equal basis with others in cultural life, and shall take all appropriate measures to ensure that persons with disabilities: (a) Enjoy access to cultural materials in accessible formats; (b) Enjoy access to television programmes, films, theatre and other cultural activities, in accessible formats; (c) Enjoy access to places for cultural performances or services, such as theatres, museums, cinemas, libraries and tourism services, and, as far as possible, enjoy access to monuments and sites of national cultural importance. . States Parties shall take appropriate meas2 ures to enable persons with disabilities to have the opportunity to develop and utilize their creative, artistic, and intellectual potential, not only for their own benefit, but also for the enrichment of society. . States Parties shall take all appropriate 3 steps, in accordance with international law, to ensure that laws protecting intellectual property rights do not constitute an unreasonable or discriminatory barrier to access by persons with disabilities to cultural materials. . Persons with disabilities shall be entitled, 4 on an equal basis with others, to recognition
Ilias Bantekas 1. General Introduction 2. Background 3. Travaux Préparatoires Pok Yin Stephenson Chow 4. Paragraph 1 4.1 Paragraph 1 (Chapeau)
and support of their specific cultural and linguistic identity, including sign languages and deaf culture. . With a view to enabling persons with dis5 abilities to participate on an equal basis with others in recreational, leisure and sporting activities, States Parties shall take appropriate measures: (a) To encourage and promote the participation, to the fullest extent possible, of persons with disabilities in mainstream sporting activities at all levels; (b) To ensure that persons with disabilities have an opportunity to organize, develop and participate in disability-specific sporting and recreational activities and, to this end, encourage the provision, on an equal basis with others, of appropriate instruction, training and resources; (c) To ensure that persons with disabilities have access to sporting, recreational and tourism venues; (d) To ensure that children with disabilities have equal access with other children to participation in play, recreation and leisure and sporting activities, including those activities in the school system; (e) To ensure that persons with disabilities have access to services from those involved in the organization of recreational, tourism, leisure and sporting activities.
4.1.1 The Right to Take Part in Cultural Life
864 866 867 872 875 875
bantekas, stephenson chow, karapapa, and polymenopoulou
864
Participation in Cultural Life, Recreation, Leisure, and Sport 4.1.2 Culture as a ‘way of life’ and Implications on the ‘cultural space’ 4.1.3 Appropriate Measures to Ensure Access to Culture 4.1.4 National Accessibility Plans
4.2 Paragraph (1)(a) 4.3 Paragraph (1)(b) 4.4 Paragraph (1)(c) 5. Paragraph 2
5.5.1 To Develop and Utilize One’s Creative, Artistic, and Intellectual Potential 5.5.2 Eliminating Social Barriers and Promoting an Inclusive Society 5.5.3 Providing Equal Opportunities in the Field of Culture
877 878 880 880 882 883 884 884 885 886
Stavroula Karapapa 6. Paragraph 3 888 6.1 The Debates on Intellectual Property in the Travaux 888 6.2 ‘all appropriate steps’ 890 6.3 ‘in accordance with international law’ 893 6.4 Laws Protecting Intellectual Property Rights 895 6.5 ‘unreasonable or discriminatory barrier to access cultural materials’ 897 Eleni Polymenopoulou 7. Paragraph 4 897 7.1 ‘Cultural identity’ 897 7.1.1 Meaning and Scope 897 7.1.2 States’ Obligations (‘recognition and support’) 901 7.1.3 Interpretation and Practice under the CRPD 903 7.2 Sign Languages 904 7.3 Deaf Culture 906 7.4 Linguistic Identity 907 7.4.1 Meaning and Scope 907 7.4.2 States Obligations (‘recognition and support’) 907 7.4.3 Interpretation and CRPD-Related Practice 908 Ilias Bantekas 8. Paragraph 5 909 8.1 Chapeau 909 8.1.1 ‘enabling participation in sport, leisure and recreation’ 909 8.1.2 ‘leisure and recreation’ 910 8.1.3 ‘sporting activities’ 912 8.2 Paragraph 5(a) 913 8.2.1 ‘mainstreaming’ 914 8.3 Paragraph 5(b) 915 8.3.1 ‘organise, develop and participate’ 915 8.3.2 ‘appropriate instruction, training and resources’ 916 8.4 Paragraph 5(c) 916 8.4.1 Accessible Tourism 917 8.5 Paragraph 5(d) 919 8.6 Paragraph 5(e) 921
1. General Introduction Article 30 covers many, sometimes disparate, issues, which require several strands of expertise. Although the underlying entitlements are accessibility and availability, the wording of article 30 suggests that in some cases the scope is broader. For example, bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
865
paragraph 2 of article 30 is geared, in part, towards the ‘enrichment of society’ as a whole by the realization of the full potential of the artistic, and intellectual capacities of persons with disabilities. Although this may dictate some form of accessibility to the ‘art market’ (broadly understood), it is far different from mere access to and availability of culture, sport, and leisure to disabled persons. Culture, and access thereto, is one of the cornerstones of article 30. This is one of the least studied human rights in the international literature and its content remains contested.1 Culture is subject to several limitations, such as censorship, freedom of expression constraints, sensitivities towards religions, hate speech, and others.2 Do these limitations apply to the right of access to culture of disabled persons in the same way as they do to their non-disabled counterparts? The general equality phrase of the CRPD is ‘on an equal basis with others’, which suggests that the limitations applicable to non-disabled persons apply in equal manner to disabled persons. But, is the opposite also true? Namely, what if a particular disabled culture, such as ‘deaf culture’ was not accessible to non-disabled persons? Although this may well go beyond the strict confines of article 30 (and hence beyond the scope of this Commentary) one should seriously consider states parties’ making accessible disability culture to the non-disabled public. This would be in line with article 8 CRPD (awareness raising) and would, moreover, facilitate the enjoyment of all other rights in the CRPD. Paragraph 3 was perhaps the most contentious of all. It opens up Pandora’s box by suggesting that existing intellectual property laws (domestic and international) should be construed in such a way as to avoid imposing any unreasonable or discriminatory barriers against persons with disabilities to the enjoyment of their right of access to cultural materials.3 The qualification that such right conforms to international law is rational, but at the same time it is overly restrictive. What if existing intellectual property (including copyright) treaties, which were engineered and enforced by powerful developed states, deny any accessibility rights to disabled persons? In this case, states must either violate their obligations under such treaties or fail to implement paragraph 5(3) of article 30. There is a significant treaty in this field, which will be explored more fully in the context of paragraph 3 of article 30, namely the Marrakesh Treaty to Facilitate Access to Published Works for Persons who are Blind, Visual Impaired, or Otherwise Print Disabled (2013), a treaty adopted under the auspices of the World Intellectual Properties Organization (WIPO) which requires parties to ‘introduce a standard set of limitations and exceptions to copyright rules in order to permit the reproduction, distribution and making available of published works in formats designed to be accessible (to the blind, visually impaired and otherwise print disabled persons’. The right to participate in sport, leisure, and recreation, while taken for granted by non-disabled persons, require a plethora of positive measures that enhance or facilitate
1 See Elsa Stamatopoulou, Cultural Rights in International Law: Article 27 of the Universal Declaration of Human Rights (Brill 2007). 2 See eg Eleni Polymenopoulou, ‘Censorship’ in Max Planck Encyclopedia of Comparative Constitutional Law (OUP 2018 forthcoming). 3 See CRPD Committee, ‘General Comment No 2: Accessibility’ UN Doc CRPD/C/GD/2 (22 May 2014) paras 44 ff, which, however, merely reiterate the injunctions in Art 30, but do not add anything substantive, other than confirming the Marrakesh Convention, which will be explored below.
bantekas, stephenson chow, karapapa, and polymenopoulou
866
Participation in Cultural Life, Recreation, Leisure, and Sport
access thereto in respect of disabled persons. Without such positive measures disabled persons are effectively denied access, which in turn ensures social exclusion, access to the educational capacity offered these entitlements, as well as the attendant quality of life inherent in the enjoyment of recreation, sport, leisure, and culture. Given that there are currently over one billion disabled people in the world, it is absurd that governments fail to see the commercial and investment potential in the range of entitlements encompassed under article 30; not to mention social justice, inclusion and an excellent tool for awareness raising and attitude change. It is in the light of these considerations and conflicts that article 30 was drafted and is now implemented.
2. Background The forerunner to article 30 is found in rules 10 and 11 of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities.4 The forerunner to the Standard Rules was, however, the World Programme of Action Concerning Disabled Persons,5 which contained much of the language and concepts later incorporated in the Standard Rules. It is clear that much of the phraseology and ideas behind paragraphs (1) and (2) of article 30 CRPD have been borrowed or significantly influenced by rule 10 of the Standard Rules. Rule 11 sets out the framework for the ‘right’ of disabled persons to sport and recreation (including tourism and other leisure-related activities). The range of access and participation rights encompassed under article 30 CRPD have also been articulated in several human rights instruments, some directly, others indirectly. Articles 27(1) and 24 UDHR address the right to participate in culture and the right to leisure and rest respectively. Article 15(1)(a) of the International Covenant on Economic, Social and Cultural Rights (ICESCR) grants to everyone the right to take part in cultural life. In equal manner, article 5(e)(vi) CERD states that: ‘In compliance with the fundamental obligations laid down in article 2 of this Convention, states parties undertake to (. . .) guarantee the right of everyone, without distinction as to race, colour, or national or ethnic origin, to equality before the law, notably in the enjoyment of the following rights: . . . (e) Economic, social and cultural rights, in particular: (vi) The right to equal participation in cultural activities’. Article 13(c) CEDAW emphasizes that: ‘states parties shall take all appropriate measures to eliminate discrimination against women in other areas of economic and social life in order to ensure, on a basis of equality of men and women, the same rights, in particular: . . . (c) The right to participate in recreational activities, sports and all aspects of cultural life’. Unlike the previous instruments, which do not articulate a right to sport or leisure, article 31 CRC similarly enunciates that: 1. States Parties recognize the right of the child to rest and leisure, to engage in play and recreational activities appropriate to the age of the child and to participate freely in cultural life and the arts. 2. States Parties shall respect and promote the right of the child to participate fully in cultural and artistic life and shall encourage the provision of appropriate and equal opportunities for cultural, artistic, recreational and leisure activity.
4
UNGA Res 48/96 (20 December 1993) Annex.
UNGA Res 37/52 (3 December 1982).
5
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
867
As already explained, there is feeble reference to the range of rights encompassed under article 30 CRPD in relation to non-disabled persons, let alone their disabled counterparts. The few available references are not particularly illuminating but reinforce the notion that the pertinent rights are couched in terms of access and participation only. General Comment No 5 by the CESCR on persons with disabilities made the point that: ‘The right to full participation in cultural and recreational life for persons with disabilities further requires that communication barriers be eliminated to the greatest extent possible. Useful measures in this regard might include “the use of talking books, papers written in simple language and with clear format and colours for persons with mental disability, [and] adapted television and theatre for deaf persons” ’.6
3. Travaux Préparatoires The first sessions of the Ad Hoc Committee demonstrate that although there was some appreciation of cultural rights (including leisure and sport) in existing instruments, this was not a priority for the drafters or the various delegations. This, to some degree, may be attributed to the relatively poor elaboration of cultural rights (in the broad sense) by human rights treaty bodies and hence its application to the disability context was not straightforward. Moreover, the issue of resources was always going to be central to such a discussion and in any event, the first sessions of the Ad Hoc Committee were pre-occupied with much more central issues, such as the definition of disability, the nature of disability rights, legal capacity, enablement and accessibility, to name a few. Not surprisingly, there was no mention in the Mexican Draft of a right to sport, leisure, or recreational activities in the form of a distinct article.7 At the second session, a number of reports were submitted by the UN Secretary- General. Although these did not directly refer to the range of rights encompassed under article 30, the discussion on enablement and capacities was no doubt the platform and the setting of the theoretical framework upon which socio-economic rights for disabled persons were meant to rest.8 Some views by governments exhibited an inclination for the advancement of cultural rights for disabled persons.9 In other documents, some reliance was placed on instruments that contained a range of cultural rights, such as the
CESCR, ‘General Comment No 5’ UN Doc E/1995/22 (9 December 1994) para 37. Mexico Working Paper UN Doc A/AC 265/WP 1 (2002); equally nothing in the EU Position Paper UN Doc A/AC 265/WP 2 (2002); equally Background Paper on ‘Human Rights of Persons with Disabilities’ UN Doc A/AC 265/CRP 2 (2002); equally ‘Report of the United Nations Consultative Expert Group Meeting on International Norms and Standards relating to Disability’ UN Doc A/AC. 265/CRP 4 (2002). 8 See eg ‘Report of the United Nations Consultative Expert Group Meeting on International Norms and Standards relating to Disability’ UN Doc A/AC 265/CRP 4 (2003); ‘Report of the Secretary-General on an overview of issues and trends related to the advancement of persons with disabilities’ UN Doc A/AC 265/ 2003/2 (2003); see also to the same effect, Danish Institute of Human Rights, ‘Discussion Paper on Founding Principles on Convention on Rights of Persons with Disabilities’ UN Doc A/AC 265/CRP 9 (2003). 9 Ad Hoc Committee, ‘Note by the Secretary-General transmitting views submitted by Governments, intergovernmental organizations and United Nations bodies concerning a comprehensive and integral international convention on the protection and promotion of the rights and dignity of persons with disabilities’ UN Doc A/AC 265/2003/4 Corr 1, and Add 1 (2003) para 28 (with Hungary referring to its domestic legislation in this respect). 6 7
bantekas, stephenson chow, karapapa, and polymenopoulou
868
Participation in Cultural Life, Recreation, Leisure, and Sport
ICESCR and the Quito Seminar,10 which referred to disabled persons’ participation in cultural life.11 There was no reference to culture in the Bangkok recommendations, but the language of ‘inclusion’, ‘participation’, ‘accessibility’ and ‘wellbeing’, among others, as well as references to the ICESCR, clearly showed that cultural rights were encompassed within the emerging framework.12 Even so, given that the notion of cultural rights was (and still is) rather foggy as concerns non-disabled persons, mere references to culture did not necessarily mean that delegates understood the precise scope and meaning of the term in the disability context. Significantly, Venezuela’s draft convention proposal included an article 18, which is one of the early forerunners to the current version of article 30.13 Otherwise, reference, both indirect and direct, was made to the broader concept of ‘accessibility’ in the Standard Rules, whereby rules 10 and 11 concern access to culture and sports and recreation respectively, as already explained.14 The Working Group, which was established by the Ad Hoc Committee convened in January 2004 and produced the first draft of the convention and elements thereof. This was preceded by the Chair’s own draft. The Chair’s draft article 27 was not far off from the current conception of article 30.15 A similar provision was proposed by China under article 10 of its own proposed draft.16 The Indian draft, on the other hand, split the various components of article 30 into several articles. In particular, article 8(c), concerning the right to participation, required states parties to: Promote the participation of persons with disabilities in any field of their choice, including sports, culture and recreation.
10 See ‘Letter dated 23 May 2003 from the Permanent Representative of Ecuador to the United Nations addressed to the Secretary of the Ad Hoc Committee on a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (Declaration of Quito, 11 April 2003 UN Doc A/AC 265/CRP 8 (2003). 11 Ad Hoc Committee, ‘Compilation of proposals for a Comprehensive and Integral Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC 265/CRP 13, Add 1 (2003); EU, ‘Elements of an International Convention’ UN Doc A/AC 265/2003/CRP 13/Add 2 (2003), where reference was made to an obligation on states to take appropriate measures so that disabled persons can enjoy access to ‘cultural fields’ on an equal footing with other persons. 12 ‘Bangkok recommendations on the elaboration of a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities—outcome of an expert group meeting and seminar held in Bangkok at the headquarters of the Economic and Social Commission for Asia and the Pacific from 2 to 4 June 2003’ UN Doc A/AC.265/CRP 10 (2003); equally ‘Beirut Declaration and Recommendations on the elaboration of a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities—outcome of the Arab Regional Conference on Norms and Standards Related to Development and the Rights of Persons with Disabilities, Beirut 27–29 May 2003’ UN Doc A/AC 265/CRP 12 (2003). 13 ‘Letter dated 18 June 2003 from the Deputy Permanent Representative of Venezuela to the United Nations addressed to the Secretary of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (Draft submitted by Venezuela) UN Doc A/AC 265/2003/WP 1 (2003). 14 Ad Hoc Committee, ‘Panel II: The Principle of Non-Discrimination and Equality from Disability Perspective: Critical Issues concerning Special Measures and Disability’; see Cynthia Waddell, ‘Critical Issues from a Disability Perspective’ (7 June 2003), available at: . 15 Chair’s Draft Elements of a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities (December 2003), available at: . 16 Working Group, ‘A Proposed Draft Text by China’, available at: .
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
869
New Zealand also offered a draft text, but this did not contain draft articles as such, but set out the conceptual framework and the key rights and principles underpinning it. The right to recreation was specifically spelt out.17 The IDA statement to the Working Group focused on cultural rights but intertwined these with the devaluing of disabled culture. However, it situated the right to culture for disabled persons within the range of proposed socio-economic rights.18 The World Blind Union made an interesting proposal that elaborated significantly on the meaning of access to culture for disabled persons, particularly the blind. Paragraph 5.10, entitled ‘right to culture and leisure’ thus read: • The right to full access to all cultural, leisure and sporting activities, facilities and equipment, including participation and spectating • The right to accessible television broadcasting, including audio description of programmes, audio sub-titling of foreign language programmes and other descriptive video services • The right to access public library services, including provision of books and information services in accessible formats, such as Braille, audio, large print and electronic computer disks.19 The Working Group’s draft article 24 at the beginning of the third session was warmly received by participating states, disabled persons’ organizations and NHRIs. As will become evident, there were some issues of contention, chiefly as concerned the role of existing intellectual property rules on the right of access to culture, but other than that it was not doubted that the right in question chiefly concerned a broad undertaking of accessibility. Despite the heavily bracketed version at the end of the third session, draft article 24 captured the bulk of the issues now encompassed in article 30 of the CRPD.20 Ireland, Canada, and Japan cautioned that intellectual property regulation was a minefield and hence a phrase should be added to highlight that draft article 24 was grounded ‘in accordance with international agreements’.21 Thailand, on the other hand, emphasized that intellectual property law should not be a pretext for refusing disabled persons access to culture. Alternative (to print) formats should be made available as a form of exemption from ordinary copyright rules. Thailand also suggested that the word ‘tape’ should be replaced with ‘multimedia’ in 1(b) to take into account the needs of the dyslexic, illiterate, and blind.22 World Federation of the Deaf (WFD) laid some emphasis on the copyright entitlements of persons with disabilities, calling for the copyright protection of disabled artists. That intellectual property caused technical issues to the Working Group was echoed by the Coordinator who made it clear that the Working Group did not have an expertise in this field.23 As regards sports, LSN suggested that: ‘(1) International sport activities for the disabled and non-disabled should be merged; discrimination should not be justified by the fact that disabled athletes also compete among themselves. The national teams should be composed of both sectors in one tournament with separate events. This, was argued, would help to 17 Working Group, ‘A Proposed Draft Text by New Zealand’, available at: . 18 Working Group, ‘Contribution by IDA Towards a UN Disability Convention’, available at: . 19 Working Group, ‘Contribution by World Blind Union’, available at: . 20 Working Group, ‘Report to the Ad Hoc Committee’, ‘Annex I: Draft articles for a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC 265/2004/WG 1 (27 January 2004). 21 22 23 ibid. ibid. ibid.
bantekas, stephenson chow, karapapa, and polymenopoulou
870
Participation in Cultural Life, Recreation, Leisure, and Sport
raise awareness and help remove stereotyping regarding the capabilities of people with disabilities and help promote the sports of people with disabilities (equally echoed by China); (2) Disabled children should not be prevented from participating in sports and cultural activities in school; (3) Countries should take positive measures to attract PWD to participate in sports; (4) Sport clubs should have special activities for the disabled, even if they cater to the non-disabled. There should not be separate clubs for the disabled and non-disabled.24 China took this further by arguing that states parties should ‘ensure disabled participation in cultural life and leisure (eg Special Olympics) and should provide support for such activities’.25 By the end of the third session, a heavily bracketed draft article 24 emerged. If it was not already over-loaded with many disparate concepts, the Holy See further suggested that it deal with religion.26 At the fourth session there was no discussion of draft article 24 or of the issues encompassed within that provision. The Ad Hoc Committee focused on all the articles before this one and on international cooperation. The same was true as regards the fifth session of the Ad Hoc Committee. At the sixth session the facilitator’s draft removed the Holy See’s reference to religion and took note of Mexico’s proposal to include a fifth subparagraph to paragraph 5 whereby states parties would undertake to promote access to tourist-related facilities and services (supported also by Costa Rica). Although this latter proposal was not incorporated (subject to further investigation) in the facilitator’s draft, it ultimately made it into the final version of article 30(5) CRPD. The facilitator further queried if access to recreational and sporting activities should be a stand-alone article and there was still some debate on copyright, albeit it was emphasized that the best interests of disabled persons should be a key consideration.27 One of the key issues that emerged from the discussions is the sense that the article contains many disparate issues that could potentially be contained in stand-alone articles; culture and sport were the dominant ones. Moreover, there was a clear overlap with other provisions, particularly since access to information and literature (in respect of the right of access to culture) was already a significant right in its own respect (draft article 13).28 The UK, speaking on behalf of the EU, was against listing accessible formats in the convention as this ran the risk of not being exhaustive. It was also opposed to listing specific impairments, arguing that if ‘hearing-impaired and deaf people feel that their needs are not met, this needs to be addressed, without resorting to a separate paragraph’ (with New Zealand concurring). The EU also maintained that ‘there is no express ‘right’ to recreational, leisure and sporting activities in the CESCR’. It argued that the language in the chapeau of draft paragraph 4 was ambiguous on this point and should be amended accordingly. This was accordingly carried through to the report of the Ad Hoc Committee.29 Australia further made the point that it supported: ‘the inclusion of ‘on an equal basis’ because this anticipates an inclusive environment for PWD . . . [further supporting] . . . mainstreaming sporting activities at the regional, national and international level tailored to the needs of 25 ibid. ibid. Ad Hoc Committee, ‘Report of the Third Session’ UN Doc A/AC 265/2004/5 (9 June 2004) 66–69. 27 Ad Hoc Committee, ‘Text of the Facilitator’, available at: . 28 See Ad Hoc Committee, ‘Daily Summary of Discussions at the Sixth Session (10 August 2005), available at: . 29 Ad Hoc Committee, ‘Report on the Sixth Session’ UN Doc A/60/266 (17 August 2005) para 143. 24 26
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
871
PWD. It opposed the South African proposal to replace ‘encourage’ with ‘ensure’ as participation should not be considered mandatory. It preferred the EU’s proposal for 4(b) as it better reflects the opportunity to provide other targeted, specific and perhaps additional initiatives for PWD. This is not a matter of parity with able-bodied persons, as the existing WG wording implies, as the nature and scope of support required differs from that for able-bodied persons.30 Overall, there was agreement that the concept of ‘culture’ should be broad enough to include ‘sport’ (New Zealand, Norway). The EU and all developed states were adamant that only the term ‘copyright’ be included, rather than intellectual property. To its credit, it emphasized that: ‘It is these laws that, both nationally and internationally, constitute barriers for PWD and deny them access to cultural materials. If the Convention is to take a step forward it will have to address this problem.’ This tension was reflected in the Ad Hoc Committee’s report of the sixth session, where both ‘copyright’ and ‘intellectual property’ were inserted in brackets in the draft text of article 24.31 By the end of the sixth session, draft article 24 was effectively the same as the final version of article 30 CRPD, save for: a) the fact that there was a subparagraph 1bis, which is paragraph 2 of article 30 CRPD and; b) several parts of paragraph 4 of draft article 24, not all of which made it into paragraph 5 of article 30 CRPD.32 By the beginning of the seventh session, the working text presented by the Ad Hoc Committee was the same as the current version of article 30 CRPD. The Thai proposal had prevailed as regards paragraph 3 and no other issue was under severe contention or in brackets.33 However, during the discussions several issues surfaced. Japan and Canada maintained their concerns about paragraph 3, requesting consultation with WIPO and the insertion of the phrase ‘in accordance with international law’.34 China requested further explanations as to the meaning of ‘cultural materials’ in paragraph 1 and the Chair asked other delegations to offer their interpretations. Yemen noted China’s question regarding the reference to ‘cultural materials’, and stated that China’s confusion might stem from the close relationship between cultural materials and cultural means. It noted that, within the context of the convention, ‘cultural materials’ should be understood to include materials ‘by which culture is produced’ or which ‘encompass culture’.35 China was equally opposed to singling out deaf culture. The WFD clarified to the satisfaction of all (with the exception of Iran) why deaf culture should be specifically mentioned.36 Developed states continued to oppose paragraph 3 and maintained that copyright and related conventions govern the intellectual property aspects of the CRPD. The International Disability Caucus (IDC) countered that since copyright also applies to educational and information materials, it shared ‘the worries of South Africa and Kenya that the international copyright laws will become so strict that it may become very difficult to obtain Braille translations’.37 The Chair made the point that ‘intellectual property’ was broader than copyright. He further noted that ‘clearly, all provisions . . . must respect international law. Daily Summary of Discussions at the Sixth Session (n 28). Ad Hoc Committee, ‘Report on the Sixth Session’ (n 29) paras 139–40. 32 ibid paras 143–46. 33 Working Text, available at: . 34 Ad Hoc Committee, ‘Daily Summary of Discussions at the Seventh Session’ vol 8 No 9 (26 January 2006), available at: . 35 Ad Hoc Committee, ‘Daily Summary of Discussions at the Seventh Session’ vol 8 No 10 (27 January 2006), available at: . 36 ibid, however, Qatar argued that there is only a single culture, thus arguing against a deaf culture. 37 ibid. 30 31
bantekas, stephenson chow, karapapa, and polymenopoulou
872
Participation in Cultural Life, Recreation, Leisure, and Sport
The concern seemed to be that the WTO, and in particular the TRIPS Agreement, create unreasonable barriers . . . Article 13 of the TRIPS Agreement does allow for limitations and exceptions to copyright restrictions. The reference in the text should therefore remain, although it may require recasting to reflect the flexibility of the law in some cases.’38 The draft of article 30 as this appeared in the report of the Ad Hoc Committee for the seventh session was very close to the finalized text (minus some last minute phrases and grammatical amendments).39 This was a pretty spectacular result given how many different views were strongly voiced even at the late hour of the seventh session. Whatever divergences were harboured at the end of the seventh session, by the eighth session article 30 was no longer under any contention, save for minor linguistic fine tuning.
4. Paragraph 1 Since first recognized in article 27 of the Universal Declaration of Human Rights (UDHR), cultural rights represent a category of human rights that primarily concern the development of one’s personhood and self-fulfilment.40 Article 22 UDHR provides that ‘everyone, as a member of society . . . is entitled to realization . . . of the economic, social and cultural rights, indispensable for his dignity and the free development of his personality’.41 Assuming that the person has a minimum well-being (article 25 UDHR) and education (article 26 UDHR), article 27 then provides that ‘[e]veryone has the right to freely participate in the cultural life of the community, to enjoy the arts and to share in scientific advancement and its benefits’—an element considered essential for an individual to fully realize her personality and character.42 The aim of the right to take part in cultural life is to provide the opportunity for every individual ‘to obtain the means of developing his personality’43 including through the pursuit of artistic, literary, and intellectual excellence. This overarching purpose of the right to take part in cultural life is common across all the human rights instruments within which the right is embedded, including the ICESCR (article 15(1)(a)),44 CRC (article 31(1)),45 CERD (article 5(vi)),46 CMW (articles 43(1)
ibid. Ad Hoc Committee, ‘Report of the Seventh Session’ UN Doc A/C 265/2006/2 (13 February 2006) 23–24. 40 See eg Ragnar Adalsteinsson and Páll Thórhallson, ‘Article 27’ in Gudmundur Alfredsson and Asbjørn Eide (eds), The Universal Declaration of Human Rights: A Common Standard of Achievement (Martinus Nijhoff 1999) 575, 580; See Council of Europe (Conference of European Ministers), ‘European Declaration on Cultural Objectives’ (COE Berlin 1984), available at: (CoE, European Declaration on Cultural Objectives). 41 Art 22 UDHR. 42 United Nations Education, Scientific and Cultural Organization (UNESCO), ‘Cultural Rights as Human Rights’ (UNESCO 1970) 73; See also CoE, European Declaration on Cultural Objectives, ‘The main aim of our societies is to enable everyone to achieve personal fulfilment in an atmosphere of freedom and respectful of human rights . . . [s]uch freedom is linked to culture.; Note that the right to participate in cultural life and the right to take part in cultural life bears identical meaning and are used interchangeably in the context of the UN human rights treaty-bodies practice; see CESCR, ‘General Comment No 21: Right of everyone to take part in cultural life (Art 15(1)(a))’ UN Doc E/C 12/GC/21 (21 December 2009) para 14. 43 1968 UNESCO Statement on Cultural Rights as Human Rights, Art 11. 44 Art 15(1)(a) ICESCR. 45 Art 31(1) CRC; see CRC Ctee, ‘General Comment No 17: The Right of the Child to Rest, Leisure, Play, Recreational Activities, Cultural Life and the Arts (Art 31)’ UN Doc CRC/C/GC/17 (17 April 2013) para 8. 46 Art 5(vi) CERD. 38 39
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
873
(g) and 45(1)(d)),47 CEDAW (article 13(c)),48 and CRPD (article 30(1) and (2)).49 The common purpose also partially underscores related concepts in international human rights law such as that of ‘cultural identity’ and ‘cultural heritage’ embodied in provisions such as article 29(c) CRC (providing that ‘the education of a child should be directed towards the development of respect for his or her cultural identity’),50 as well as, implicitly, in article 31 CMW (providing that states must ensure respect for the cultural identity of migrant workers and must not prevent them from maintaining cultural links with their state of origin) because being able to express one’s cultural identity and part take in one’s heritage was thought to be crucial for an individual’s personal development.51 The connection between the right to take part in cultural life and self-development speak to the former’s emancipatory nature, which is further exemplified, in the context of the CRPD, through article 30(2) of the CRPD, requiring states to ensure persons with disabilities ‘have the opportunity to develop and utilize their creative, artistic, and intellectual potential’.52 Given the importance of the right for pursuing one’s self-realization, it is now characterized by the human rights treaty-bodies as a freedom,53 ie the freedom to pursue the full development of our personalities.54 Notice that cultural rights are traditionally considered a ‘neglected category’ of rights, ie the category of rights that is the least researched, developed, and understood as compared to its civil, political, economic, and social counterparts.55 This description appears to hold true within the practice of the CRPD Committee. Out of the sixty-two concluding observations of the Committee publicly available to date, only forty-four address article 30 CRPD. Furthermore, within these forty-four concluding observations, twenty- three repeated one single recommendation—ie to encourage the state party concerned to ratify the Marrakesh Treaty.56 In addition, the Reporting Guidelines of the CRPD do little more than to reiterate the provisions expressed in article 30(1) and (2) CPRD.57 References to the cultural rights of specific minority groups such as indigenous populations with disabilities are absent from the CRPD practice, despite ‘available statistics show[ing] that indigenous peoples are disproportionately likely to experience disability in comparison to the general population’.58 47 International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families (adopted 18 December 1990, entered into force 1 July 2003) 2220 UNTS 3 (‘CMW’) Arts 43(1)(g) and 45(1)(d). 48 49 Art 13(c) CEDAW. Art 30(1) CRPD. 50 Art 29(c) CRC; see also CESCR, ‘General Comment No 21’ para 15(b). 51 ibid paras 15(b) and 34; the right to take part in cultural life includes the right ‘to know and understand his or her own culture and that of others through education and information’ and to develop one’s cultural identity individually or in association with others through its expression. 52 53 Art 30(2) CRPD. CESCR, ‘General Comment No 21’ (n 42) para 6. 54 Arts 2(a) and (b), 1976 Recommendation on the Participation in Cultural Life. 55 See eg Janusz Symonides, ‘Cultural Rights: A Neglected Category of Human Rights’ (1998) 15 Int’l Soc Sci J 559. 56 Although note that the recommendation to ratify the Marraskesh Treaty was contained in forty out of the forty four concluding observations in which Art 30 of the CRPD was addressed. 57 CRPD, ‘Guidelines on Treaty-Specific Documents to be Submitted by States Parties under Article 35, paragraph 1, of the Convention on the Rights of Persons with Disabilities’ UN Doc CRPD/C/2/3 (18 December 2009); see also CESCR, General Comment No 21 paras 30–31. 58 See UN Division for Social Policy and Development Disability, ‘Indigenous Persons with Disabilities: Achieving Rights and Inclusion in Development: A Call to Action’, available at: .
bantekas, stephenson chow, karapapa, and polymenopoulou
874
Participation in Cultural Life, Recreation, Leisure, and Sport
Yet, the right to take part in cultural life is such an important right to persons with disability. Not only does the opportunity to take part in culture facilitate their inclusion into society,59 it is a powerful means for them to express their ideas, thoughts, values, and identities (especially for those with communication barriers), to challenge stereotypes (eg through forms of disability arts),60 to pursue their self-realization and recognition (eg through expressive and artistic activities and sports),61 to obtain acknowledgement, psychological comfort, and healing (especially for those permanently injured in war and conflicts, through the participation in commemorative events), and/or otherwise to improve their overall quality of life (eg through leisure and other cultural services).62 And although the CRPD practice generally speaks of physical, social and communication barriers, these are not the only types of barriers that hinder the participation of persons with disabilities in cultural life, which may include, among other obstacles, technological barriers, policy barriers (such as that arising from the lack of awareness or weak enforcement of laws), and programmatic barriers (that limit the effective delivery of a cultural policy).63 In this respect, more guidance from the Committee appears necessary.64 In this light, the preceding commentary on paragraphs 1 and 2 will focus on the interpretation of the right to take part in cultural life in the UN treaty-bodies practice and address its relevance and application in the context of persons with disabilities. It will address the core concepts embedded in articles 30(1) and (2) of the CRPD: what is culture/ cultural life as understood by the treaty-bodies and thus the meaning of ‘the right to take part in cultural life’? What does it mean to have the ‘opportunity to develop and utilize one’s creative, artistic, and intellectual potential’? What does it mean to be able to develop one’s potential ‘not only for the benefit of the individual with disability’, but also ‘for the enrichment of society’? We proceed by offering an interpretation of the obligations under articles 30(1) and (2) that is consistent with current international human rights law and the rest of the UN human rights treaty-body jurisprudence. We shall also highlight some notable state practices in relation to these provisions.65
59 Jerome Singleton and Simon Darcy, ‘ “Cultural Life”, Disability, Inclusion and Citizenship: Moving Beyond Leisure in Isolation’ (2013) 16 Annuals of Leisure Research 183. 60 eg individuals with physical or intellectual disabilities have in the past sought to disrupt contemporary constructions of beauty (or ‘beauty-ism’) and to bring to the notion of ‘beauty’ a renewed and more inclusive meaning; see eg Katie Ellis, Disability and Popular Culture: Focusing Passion, Creating Community and Expressing Defiance (Routledge 2015). Disabled communities have also sought to oppose negative imagery of their group through disability art. 61 See eg Edward Hall, ‘Making and Gifting Belonging: Creative Arts and People with Learning Disabilities’ (2013) 45 Environment and Planning 244. 62 See eg CRC Ctee, General Comment No 9, ‘The Rights of Children with Disabilities’ UN Doc CRC/C/ GC9 (27 February 2007) para 71. 63 See HRC, ‘Report of the Special Rapporteur of the Human Rights Council on the Rights of Persons with Disabilities, Catalina Devandas-Aguilar’ UN Doc A/71/314 (9 August 2016) para 7. 64 In addition, to date, only one individual communication raised Art 30 as a potential issue. Even so, it was only remotely relevant to the author’s central claims. In LML v United Kingdom, the author claimed that the denial of access to adequate health care lead her into developing a multiple rare neurological diseases. During the period as she was suffering from the disease, she was denied legal redress on equal basis with others against the government for their failure and repeated refusal to diagnosis, treat and tend to the root cause of her illness, which in turn prevented her from having a normal community life, work, and participation in cultural life. Her claim was dismissed by the CRPD as inadmissible—see LML v United Kingdom UN Doc CRPD/C/17/ D/27/2015 (24 March 2017). 65 Note also that in 2015, the Council of Europe has compiled a document entitled ‘Access for People with Disabilities to Culture, Tourism, Sports and Leisure Activities: Towards Meaningful and Enriching Participation’
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
875
4.1 Paragraph 1 (Chapeau) 4.1.1 The Right to Take Part in Cultural Life ‘Culture’ is an expanding concept in international human rights law and discourse.66 When the right to take part in cultural life was first recognized, ‘culture’ largely referred to ‘high culture’,67 ie encompassing cultural products and performances esteemed by a society to be of exceptional aesthetic, emotional, or intellectual value or with which a society considers ‘art’. The right to take part in cultural life, in this context, referred to the protection of the status, integrity, and the intellectual property of artists and other ‘intellectual workers’.68 Access to culture was limited to access of cultural institutions, such as museums and concert halls.69 However, this narrow, elitist definition of culture has subsequently expanded as culture was envisaged as ‘not limited to access to works of art and the humanities, but is at one and the same time the acquisition of knowledge, the demand for a way of life and the need to communicate’.70 ‘Access to culture’ then embraces access to ‘popular culture’,71 meaning access to books, films, radio, television, newspapers, and magazines,72 or more generally ‘access to knowledge’.73 The mass media are considered a significant part of ‘cultural services’ and as playing a crucial role in the promotion and dissemination of information that enables individuals and communities to develop and assert their cultural values and identities.74 Recreation, leisure, and sports are also an indispensable component of popular culture;75 to some communities and groups, these activities are further considered part of their heritage. And the inclusion of sports in the
surveying best practices around Europe in the fulfillment of the right as a precursor to Recommendation CM/Rec(2013)3 of the Committee of Ministers to member States on Ensuring Full, Equal and Effective Participation of Persons with Disabilities in Culture, Sports, Tourism and Leisure Activities; see Council of Europe, ‘Access for People with Disabilities to Culture, Tourism, Sports and Leisure Activities: Towards Meaningful and Enriching Participation’, available at: . Others practices contained in the Chapter were compiled from the State reports submitted to the CRPD. 66 See Roger O’Keefe, ‘The “Right to Take Part in Cultural Life” under Article 15 of the ICESCR’ (1998) 47 ICLQ 904; Pok Yin S Chow, ‘Culture as Collective Memories: An Emerging Concept in International Law and Discourse on Cultural Rights’ (2014) 14 HRLR 611. 67 ibid (Chow), although it is tempting to read the article as including the protection on minorities (or ‘minority cultures’) that was not the intention of the drafters of Art 27 of the UDHR. In fact, the protection on the rights of minorities was deliberately excluded. The concept of ‘culture’ in this respect is very similar to the German concept of Kultur or the idea of ‘being cultivated’; see also Johannes Morsink, The Universal Declaration of Human Rights: Origin, Drafts and Intent (University of Pennsylvania Press 1999) 366. 68 eg during the drafting of the UDHR, the Czech delegate to the Commission on Human Rights saw the article ‘as involving a duty on the part of States to bring “masterpieces” and “treasures of culture” within the reach of the masses’; see UNGA, ‘Draft Covenant on Economic, Social and Cultural Rights’ UN Doc A/ C 3/SR 795 para 6; United Nations Department of Public Information, These Rights and Freedoms (United Nations DoPI 1950) 70–71. In the General Assembly as the draft UDHR was debated, the Mexico delegate ‘pointed out that the Declaration had already recognized the rights of the wage earner, the family, the mother and the child. If the Committee wished to avoid a serious omission, the rights of the individual as an intellectual worker, scientist, or writer must be recognized.’ 69 ibid. 70 Preamble, 1976 Recommendation on the Participation in Cultural Life; see Cees J Hamelink, The Politics of World Communication: A Human Rights Perspective (Sage 1994) 186. 71 This concept is sometimes referred to as ‘mass culture’ in UNESCO documents. 72 See O’Keefe (n 66). 73 See eg Art 4(4) of the 1966 Declaration on International Cultural Cooperation. 74 75 CESCR, ‘General Comment No 21’ para 32. O’Keefe (n 66).
bantekas, stephenson chow, karapapa, and polymenopoulou
876
Participation in Cultural Life, Recreation, Leisure, and Sport
overall right to take part in cultural life recognizes the possibility of individuals ‘to attain their potential in and through sports’.76 The emphasis on ‘participation’ implies that the right to take part in cultural life is not confined to the freedom to enjoy (read: ‘consume’) culture, but also the freedom to pursue and contribute to every aspect of cultural life. Culture is then viewed less as a product or as manifestations but as a process,77 entailing, inter alia, different forms of artistic, creative and intellectual activities and expressions. General Comment No 21 of the CESCR clarifies that it is no longer valid to consider the right to take part in cultural life as simply relating to the provision of access to culture. Rather, the right embodies three different elements: (a) participation in cultural life (encompassing, inter alia, the right to seek and develop cultural knowledge, to pursue creative activities, and to identify oneself with a community) (b) access to cultural life (eg to know and understand culture through education and information, to follow a way of life) and (c) contribution to cultural life (eg to be involved in the creation of spiritual, material, intellectual and emotional expressions of the community and in the devising of cultural policies and decisions).78 ‘The expression “cultural life” ’, as the CESCR explains, ‘is an explicit reference to culture as a living process, historical, dynamic and evolving, with a past, a present and a future.’79 The right to take part in cultural life thus implies an obligation, not only to set up cultural institutions as a part of rendering culture available to everyone, but also to subsidize and fund the production and exhibition of cultural goods through all forms of cultural services in order to bring such cultural goods and services within the reach of all.80 Concluding observations of treaty-bodies concerning the right to take part in cultural life further focus on three areas: (1) the protection and promotion of arts, literatures, and other cultural, recreation, and leisure activities including sports; (2) the establishment and provision of access to institutional infrastructures and services for these activities; and (3) the acknowledgement of the role of mass media in the promotion of culture.81 These further emphasize the freedom from censorship82 and positive obligations to ensure access to arts and literature,83 including the provision of support and subsidies to cultural associations, artists,84 and educators,85 and more importantly, through the setting up of cultural institutions and ensuring individual access to these institutions.86 States are also called upon to ‘democratize culture’—ie to open up cultural institutions to the general
76 National Disability Authority, ‘Promoting the Participation of People with Disabilities in Physical Activity and Sport in Ireland’, available at: . 77 78 79 O’Keefe (n 66). CESCR, ‘General Comment No 21’ para 15. ibid para 11. 80 See HRCtee, ‘General Comment No 23’ para 3.2; CESCR, ‘General Comment No 21’ para 13(a). 81 CESCR, ‘Revised Guidelines Regarding the Form and Content of Reports to be Submitted by State Parties under Articles 16 and 17 of the International Covenant on Economic, Social and Cultural Rights’ UN Doc E/C 12/1990/8, Annex IV (17 June 1991) 108 (‘1990 CESCR Revised Guidelines’) paras 1(a), (b), and (e); See also CESCR, ‘Guidelines on Treaty-Specific Documents to be Submitted by States Parties under Articles 16 and 17 of the International Covenant on Economic, Social and Cultural Rights’ UN Doc E/C 12/ 2008/2 (24 March 2009) (‘2008 CESCR Reporting Guidelines’) para 67(a). 82 See eg CESCR, ‘Concluding Observations on Kenya’ UN Doc E/C 12/1993/6 (27 May 1993) para 19; CESCR, ‘Concluding Observations on Egypt’ UN Doc E/C 12/1/Add 44 (23 May 2000) para 25; CESCR, ‘General Comment No 21’ para 49(c). 83 CESCR, ‘Concluding Observations on Guinea’ UN Doc E/C 12/1/Add 5 (28 May 1996) para 24. 84 CESCR, ‘Concluding Observations on Luxembourg’ UN Doc E/C 12/1/Add 86 (26 June 2003) para 13. 85 CESCR, ‘Concluding Observations on Germany’ UN Doc E/C 12/1993/17 (5 January 1994) para 12. 86 1990 CESCR Revised Guidelines para 1(b); 2008 CESCR Reporting Guidelines para 67.
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
877
public,87 and to ensure the ‘broadest possible participation in the creation of cultural goods and decision-making as well as the dissemination of culture’88 on the basis of non- discrimination.89 States also have the duty to ‘disseminate culture’,90 which effectively means to popularize cultural activities through the mass media and other forms of communication such as the Internet.91 States are obliged to eliminate the barriers obstructing the participation in and contribution to cultural life, for instance, by requiring local governments to provide and enable cultural activities in minority languages,92 and in contexts that are culturally acceptable to minorities.93
4.1.2 Culture as a ‘way of life’ and Implications on the ‘cultural space’ As often noted, one important definition of ‘culture’ in international human rights law is the understanding of culture as a ‘way of life’.94 This understanding emerged from the 1982 Mexico City Declaration on Cultural Policies and was subsequently endorsed in a series of UNESCO instruments and adopted by UN human rights treaty-bodies.95 By extending beyond the notions of high and popular culture and further acknowledging the distinctive ways of thinking and ways in which peoples’ lives are organized, this understanding of culture provided a broad and inclusive definition that ‘recognizes the intricate tapestry of culture that defines societies.’96 It implies that culture (or cultural life) as a whole cannot be adequately protected in piecemeal fashion, by only protecting a group’s language and religion, or by providing for the establishment of and access to cultural institutions.97 To communities—minority groups and indigenous populations in particular—it implies a holistic protection of the totality of the groups’
87 Section A, 1976 Recommendation on Participation on Cultural Life; See also UNESCO, Declaration on Cultural Policies, World Conference on Cultural Policies, 26 July–6 August 1982 (‘1982 Mexico City Declaration’), available at: . 88 ibid para 18. 89 See eg CESCR, ‘Concluding Observations on Austria’ UN Doc E/C 12/1994/16 (14 December 1994); CERD, ‘Concluding Observations on Armenia’ UN Doc A/57/18 (14 August 2002) para 281; CERD, ‘Concluding Observations on Turkmenistan’ UN Doc CERD/C/TKM/CO/5 (27 March 2007) para 15. 90 Stephen Marks, ‘Defining Cultural Rights’ in Morten Bergsmo (ed), Human Rights and Criminal Justice for the Downtrodden: Essays in Honour of Asbjorn Eide (Martinus Nijhoff 2003) 307; CESCR, ‘Concluding Observation on Germany’ UN Doc E/C 12/1993/17 (5 January 1994) para 11; the obligation to ensure access to mass media and other forms of communication is also construed in relation to the freedom of information; see CESCR, ‘Concluding Observations on China’ UN Doc E/C 12/1/Add 107 (13 May 2005) para 68; CESCR, ‘General Comment No 21’ para 16(b), ‘[a]ccessibility also includes the right of everyone to seek, receive and share information on all manifestations of culture in the language of the person’s choice, and the access of communities to the means of expressions and dissemination’. 91 CESCR, ‘Concluding Observations on Libya’ UN Doc E/C 12/LYB/CO/2 (25 January 2006) para 39. 92 CERD, ‘Concluding Observations on Albania’ UN Doc CERD/C/63/CO/1 (10 December 2003) para 23; CERD, ‘Concluding Observations on Latvia’ UN Doc CERD/C/63/CO/7 (10 December 2003) para 16; see also Art 17(d), CRC; CESCR, ‘General Comment No 21’ para 52(b). 93 CESCR, ‘Concluding Observations on Romania’ UN Doc E/1995/22 (1994) 26 at paras 94 and 97. 94 UNESCO, ‘Cultural Rights as Human Rights: Studies and Documents on Cultural Policies’ (UNESCO 1970) 74; see HRCtee, ‘General Comment No 23’ para 3.2; CESCR, ‘General Comment No 21’ para 13; O’Keefe (n 66) 905. 95 Preamble, 1982 Mexico City Declaration. 96 See Elizabeth A Thomas-Hoffman, ‘Cultural Preservation and Protection’, available at: . This notion of culture significantly influenced the works of the UNESCO from the 1990s to the present day. 97 Chow (n 66) 623.
bantekas, stephenson chow, karapapa, and polymenopoulou
878
Participation in Cultural Life, Recreation, Leisure, and Sport
material and non-material heritage.98 It further implies protection of their land and environment as the site of ‘socio-economic, spiritual and cultural anchorage’99 (ie the site where the social reproduction of traditions, knowledge and beliefs take place), further giving rise to an understanding of culture as the ‘cultural environment’ or ‘cultural space’.100 Along this logic, extensive jurisprudence has been developed concerning the appropriation and exploitation of indigenous land, thereby bringing cultural rights into direct relationship with minority rights—ie whether their access to culture is possible depends on the very continuation of their indigenous ‘way of living’.101 The concept has further expanded to cover the protection of the ecological environment of these communities as General Comment No 21 of the CESCR called upon states parties to ensure the availability of ‘nature’s gifts, such as seas, lakes, rivers, mountains, forests and nature reserves, including the flora and fauna found there, which give nations their character and biodiversity’.102 Nonetheless, a notable development could be observed in the context of cultural rights in cities, one which relates to the access and use of public space as the venue where cultural activities such as memorialization and commemoration events,103 street performances, visual art, and graffiti take place.104 The Special Rapporteur on Cultural Rights in her Fifth Thematic Report, for instance, remarked that ‘[t]he use of public space for art is crucial as it allows people, including marginalized people, to freely access, enjoy and sometimes contribute to the arts, including in its most contemporary forms’,105 drawing particular attention to the over-regulation of public space. Although the notion of ‘cultural space’ is seldom invoked in the CESCR’s concluding observations other than in the context of indigenous groups, the concept of access to cultural or public space was clearly envisaged in General Comment No 21 of the CESCR as it defines culture as including, inter alia, ‘the shared open spaces essential to cultural interaction, such as parks, squares, avenues, and streets.106
4.1.3 Appropriate Measures to Ensure Access to Culture For persons with disabilities, one of the biggest obstacles to participation in cultural life stems from the lack of access to culture. For instance, deaf-blind persons are easily excluded from cultural life simply because their right to interpreters in theatre plays 98 Rodolfo Stavenhagen, ‘Cultural Rights: A Social Science Perspective’, in Asbjørn Eide, Catarina Krause, and Allan Rosas (eds), Economic, Social and Cultural Rights: A Text Book, (2nd edn, Martinus Nijhoff 2001) 85 at 90. 99 Jérémie Gilbert, ‘Custodians of the Land’ in Mairead Nic Craith, Michele Langfield, and William Logan (eds), Cultural Diversity, Heritage and Human Rights: Intersections in Theory and Practice (Routledge 2010) 31, 35; see CESCR, ‘General Comment No 21’ para 36, extending the understanding of culture to encapsulate the symbolic and emotional attachments which indigenous peoples invest in their land. 100 Gilbert (n 99). 101 Alexandra Xanthaki, Indigenous Peoples and United Nations Standards: Self-determination, Culture, Land (CUP 2007) 8. 102 CESCR, ‘General Comment No 21’ para 16(a). 103 See UNHRC, ‘Report of the Special Rapporteur in the Field of Cultural Rights: Memorialization Processes’ UN Doc A/HRC/25/49. 104 See UNHRC, ‘Report of the Special Rapporteur in the Field of Cultural Rights, Farida Shaheed: The Right to Freedom of Artistic Expression and Creativity’ UN Doc A/HRC/23/34 (14 March 2013). 105 ibid paras 65–68. 106 CESCR, ‘General Comment No 21’ para 16(a). See also the Interarts Foundation, ‘Draft Charter of Cultural Rights and Commitments in the City (Barcelona 2002)’ available at: .
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
879
and other cultural venues are denied.107 The concept of accessibility is extensively addressed in General Comment No 2 of the CRPD Committee, in which accessibility is acknowledged as ‘a precondition for persons with disabilities to live independently and participate fully and equally in society . . . [it is also] one of the principles on which the Convention on the Rights of Persons with Disabilities is based’.108 The requirement of ‘accessibility’ is a key concept in the context of the right to take part in cultural life for persons with disabilities,109 which is evidently reflected in the wordings of articles 30(1)(a), (b), and (c) CRPD. General Comment No 5 of the CESCR explained that discrimination against persons with disabilities take on a variety of forms, including such ‘segregation and isolation achieved through the imposition of physical and social barriers’.110 It went on to provide that: ‘the right to full participation in cultural and recreational life for persons with disabilities further requires that communication barriers be eliminated to the greatest extent possible’.111 Similarly, General Comment No 17 of the CRC Committee recognizes the importance of accessibility of children with disabilities in cultural life and the arts, addressing in particular, the ‘cultural attitudes and negative stereotypes which are hostile to and rejection of children with disabilities [and the] physical inaccessibility of, inter alia, public spaces, parks . . . cinemas, theatres, concert halls . . . [and other] cultural venues’.112 The provision of accessibility on an equal basis, therefore, entails both negative and positive obligations. The former requires states to refrain from discriminatory practices that would contribute to the segregation and isolation of persons with disabilities in the cultural sphere. The latter requires states to legislate or otherwise introduce administrative measures to combat discriminatory practices and to invest resources in order to facilitate their participation in cultural life on an equal basis. These obligations could also be read in light of the duties to ‘respect, protect and fulfill’ in the context of economic, social and cultural rights. The goal, as expressed in General Comment No 21 of the CESCR, is for states parties to fulfil ‘[g]uaranteed access for all, without discrimination on grounds of financial or any other status, to museums, libraries, cinemas and theatres and to cultural activities, services and events’.113 This understanding is in line with the 1982 World Programme of Action Concerning Disabled Persons which envisages the provision of equal opportunities as ‘the process through which the general system of society, such as the physical and cultural environment, housing and transportation, social and health services, educational and work opportunities, cultural and social life, including sports and recreational facilities are made accessible to all.’114
107 Theresia Degener, ‘A Human Rights Model of Disability’ in Peter Blanck and Eilinoir Flynn (eds), Routledge Handbook of Disability Law and Human Rights (Routledge 2016) 33. 108 CRPD Committee, General Comment No 2: Accessibility (article 9) UN Doc CRPD/C/GC/2 (22 May 2014) (‘CRPD, General Comment No 2’). 109 CESCR, ‘General Comment No 21’ para 16(b). 110 CESCR, General Comment No 5: Persons with Disabilities UN Doc E/ 1995/ 22 (9 December 1994) (‘CESCR, General Comment No 5’). 111 112 ibid para 37. CRC Ctee, ‘General Comment No 17’ para 50. 113 CESCR, ‘Concluding Observations on Estonia’ UN Doc E/C 12/1/Add.85 (19 December 2002) para 10, the CESCR noted with satisfaction that ‘many cultural activities, such as theatrical performances, concerts, ballet and the like, continue to be subsidized in order to encourage the widest possible attendance’. 114 UNGA Res 37/52 (3 December 1982) ‘World Programme of Action concerning Disabled Persons’.
bantekas, stephenson chow, karapapa, and polymenopoulou
880
Participation in Cultural Life, Recreation, Leisure, and Sport
4.1.4 National Accessibility Plans Resources required to enhance accessibility to culture may take a variety of forms, ranging from affording persons with disabilities a higher priority for booking sports and cultural venues, to designating areas for the dropping off of persons with disabilities in restricted zones. Others include different kinds of financial assistance making access to cultural life affordable.115 To provide ‘access to culture’ on an equal basis, states must necessarily take into account the varying capabilities of persons with disabilities, as well as to cater for their evolving capacities (in the context of children)116 and intersectional needs.117 To appropriately allocate resources to fulfil article 30 CRPD requires states to conduct data collection and analysis in order to identify the barriers that hinder access to cultural life.118 States should also legislate and/or implement administrative orders demanding mandatory action plans to be drawn up by all levels of government.119 National accessibility plans should take the form of concrete action plans that set out timeframes with specific indicators, measureable objectives,120 and deadlines, further allocating the resources necessary to remove any barriers to cultural life.121 As part of such initiatives, states are further required to conduct comprehensive reviews of their cultural policies to ensure their compliance with article 30 CRPD.122 States should put into place ‘adequate monitoring mechanism(s) to ensure the practical implementation of accessibility standards and relevant legislations.’123
4.2 Paragraph (1)(a) Article 30(1)(a) CRPD provides that persons with disabilities should enjoy access to cultural materials in accessible formats. The notion of ‘cultural materials’ is broad.124 115 Initial Report Submitted by the Republic of Korea UN Doc CRPD/C/KOR/1 (27 February 2013) para 151; Initial Report submitted by Ukraine UN Doc CRPD/C/UKR/1 (12 November 2014) para 319. 116 See CRC Ctee, ‘General Comment No 17’ para 23, calling on states to provide age-appropriate assistance to children with disabilities to facilitate their participation in cultural life. 117 See Gauthier de Beco, ‘Protecting the Invisible: An Intersectional Approach to International Human Rights Law’ (2017) 17 HRLR 633. 118 Art 31 CRPD; CRPD Committee, ‘General Comment No 2’ para 33; See also CESCR, Concluding Observations on Australia UN Doc E/C 12/1993/9 (3 June 1993) para 17; CRPD Committee, ‘Concluding Observations on the United Arab Emirates’ UN Doc CRPD/C/ARE/CO/1 (3 October 2016) paras 55–56; 119 On the potential effect of (mandatory) Action Plans, see Melinda Jones and Lee Ann Basser Marks, ‘Disability, Rights and Law in Australia’ in Melinda Jones and Lee Ann Basser Marks (eds), Disability, Divers- ability and Legal Change (Martinus Nijhoff 1999) 189, 205–07. 120 See eg CRPD Committee, ‘Concluding Observations on the United Kingdom of Great Britain and Northern Ireland’ UN Doc CRPD/C/GBR/CO/1 (3 October 2017) para 64. 121 CRPD Committee, ‘Concluding Observations on Honduras’ UN Doc CRPD/C/HND/CO/1 (4 May 2017) para 64; General Comment No 2 of the CRPD Committee further obliges states parties ‘to adopt action plans and strategies to identify existing barriers to accessibility, set time frames with specific deadlines and provide . . . resources necessary to remove the barriers’. CRPD Committee, ‘Concluding Observation on Luxemburg’ UN Doc CRPD/C/LUX/CO/1 (10 October 2017) para 53, ‘itemize a budget to promote and protect the right of persons with disabilities to participate in cultural life, recreation, leisure and sport on an equal basis with others’. 122 As a general obligation under the CRPD, states parties are under an obligation to conduct ‘cross- cutting and comprehensive reviews’ of their legislations to ensure compliance with the Convention; see eg CRPD Committee, ‘Concluding Observation on the European Union’ UN Doc CRPD/C/EU/CO/1 (2 October 2015). 123 CRPD Committee, ‘General Comment No 2’ para 10. 124 Art 2 CRPD does not define the term ‘cultural materials’, but see UNESCO Agreement on the Importation of Education, Scientific and Cultural Materials, with Annexes A to E (17 June 1950).
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
881
Generally, the term refers to either tangible cultural products (eg books, periodicals, paintings, and sculptures etc) or intangible cultural content embodied in tangible form (eg films and sound recordings). For individuals with visual impairments, the enjoyment of arts, for instance, could be rendered achievable through suitable narrations, while individuals with intellectual disabilities may benefit from ‘the use of talking books, papers written in simple language and with clear format and colours’.125 One recurring message that the CRPD Committee emphasized in its concluding observations and General Comment No 2 is that where copyright laws have prevented cultural materials to be rendered into accessible formats (such as in Braille, audio, or any other multi-media format) such laws should be amended to provide exceptions in light of the specific needs of the persons with disabilities.126 In this context, the CRPD Committee has repeatedly encouraged states parties to ratify the Marrakesh Treaty to Facilitate Access to Published Works for Persons who are Blind, Visually Impaired, or Otherwise Print Disabled (2013), a treaty adopted under the auspices of the World Intellectual Property Organization (WIPO), which requires contracting states to ‘introduce a standard set of limitations and exceptions to copyright rules in order to permit the reproduction, distribution and making available of published works in formats designed to be accessible (to the blind, visually impaired and otherwise print disabled persons).’127 In states such as Austria, laws on copyright currently allow for the non-commercial adaptation of published work not only for the visually impaired, but also in respect of persons with other forms of disabilities ‘as long as access to the specific work via sensory means is not possible because of their disability’.128 Moreover, states are also encouraged to ‘improve access to information and reading matter for blind or visually impaired persons, by promoting collaboration with publishers, libraries, documentation centres, educational centres, universities and others’.129 In fact, many states, including Bosnia and Herzegovina,130 Latvia,131 and Lithuania,132 have established libraries especially for individuals with visual impairments, housing books printed in Braille fonts as well as in audio format. In Armenia, an ‘Information Communication Project’ was rolled out to assist blind persons and the visually impaired to access library information through computer technologies.133 Other states, such as Croatia, have further extended such efforts to their cultural heritage programmes, by
125 CESCR, ‘General Comment No 5’ para 37; See CRPD Committee, ‘Concluding Observations on Slovakia’ UN Doc CRPD/C/SVK/CO/1 (17 May 2016) para 82: ‘The Committee recommends that the State party ensure that public libraries increase their accessibility and stock of easy-to-read, digital, audio and Braille publications.’ 126 This recommendation was noted in most of the concluding observations of the CRPD Committee that addressed Art 30; see eg CRPD Committee, ‘Concluding Observations on Turkmenistan’ UN Doc CRPD/C/ TKM/CO/1 (13 May 2015) paras 47–48; CRPD Committee, ‘Concluding Observations on the Cook Islands’ UN Doc CRPD/C/COK/CO/1 (15 May 2015) paras 53–54; CRPD Committee, ‘General Comment No 2’ para 45. 127 Moreover, the concern for cultural materials for the visually impaired could be traced in Art II of the UNESCO Agreement on the Importation of Educational, Scientific and Cultural Materials. 128 Initial Report submitted by Austria UN Doc CRPD/C/AUT/1 (10 October 2011) para 333. 129 CRPD Committee, ‘Concluding Observations on Honduras’ UN Doc CRPD/C/HND/CO/1 (4 May 2017) para 64. 130 Council of Europe (n 65) 39. 131 Initial Report submitted by Latvia UN Doc CRPD/C/LVA/1 (29 October 2015) para 212. 132 Initial Report submitted by Lithuania UN Doc CRPD/C/LTU/1 (2 December 2014) para 163. 133 Initial Report submitted by Armenia UN Doc CRPD/C/ARM/1 (24 March 2015) para 274.
bantekas, stephenson chow, karapapa, and polymenopoulou
882
Participation in Cultural Life, Recreation, Leisure, and Sport
ensuring that museum catalogues are produced in Braille.134 In the UK, the Oxford University Museum launched an eighteen-month Multisensory Access project to develop multisensory tools to facilitate persons with visual impairments to engage with visual arts in a meaningful way.135
4.3 Paragraph (1)(b) Article 30(1)(b) addresses a very similar concern to that of article 30(1)(a) and broadly relates to the accessibility of cultural products not embodied or disseminated in tangible form, eg productions such as television programmes, theatrical performances and other cultural activities. The term ‘accessible format’ is common to both article 30(1)(a) and (b), thereby placing an emphasis on accessibility as to the content of these cultural activities. For example, in the context of persons with hearing impairments, it requires states to provide or subsidize assistive listening devices in cultural institutions (such as museums, theatres, and art galleries) and the provision of sign language, audio-subtitles,136 or suitable subscripts and captioning for cultural productions such as movies and television programmes. In Norway, audio induction loops are installed in concert halls to facilitate individuals with hearing aids.137 The Swedish Arts Council, on the other hand, is supporting the development of portable devices for visual and sign language interpretation in theatres.138 Notable efforts could also be identified in countries such as Cyprus,139 Germany,140 and Sweden,141 where it is a prescribed requirement for broadcasting licensees to take into account the needs of persons with disabilities. Some states further dedicate a particular percentage of airing time for programmes that specifically targets persons with disabilities as audience.142 The role of discrimination laws and tribunals also play a huge part in promoting obligations under this sub-paragraph. In Canada, the Canadian Human Rights Tribunal ruled in Vlug v Canadian Broadcasting Corp that the Canadian Broadcasting Corporation (CBC) discriminated against a deaf applicant by failing to provide captioning in any of its programmes.143 Since cultural content may be disseminated on the Internet, it may imply a duty for states to at least examine the possibility of rendering certain culture-related web-content accessible.144
Initial Report submitted by Croatia UN Doc CRPD/C/HRV/1 (7 May 2013) para 218. University of Oxford, ‘Improving Access for Visually-Impaired Visitors: Oxford University Museums Partnership’ (4 August 2016) available at: ; see Serap Buyurgan, ‘The Expectations of the Visually Impaired University Students from Museums’ (2003) Educational Sciences: Theory & Practice 1191, where the author described some of the initiatives undertaken in the museums of UK to accommodate the needs of the visually impaired. 136 Initial Report submitted by Belgium UN Doc CRPD/C/BEL/1 (13 March 2013) para 61. 137 Initial Report submitted by Norway UN Doc CRPD/C/NOR/1 (7 December 2015) para 276. 138 Initial Report submitted by Sweden UN Doc CRPD/C/SWE/1 (18 September 2012) para 289. 139 Initial Report submitted by Cyprus UN Doc CRPD/C/CYP/1 (27 February 2015) para 99. 140 Initial Report submitted by Germany UN Doc CRPD/C/DEU/1 (7 May 2013) para 99. 141 Initial Report submitted by Sweden para 293. 142 See for eg Initial Report submitted by Cyprus para 99. 143 Vlug v Canadian Broadcasting Corp (2000) 38 CHRR D/404. 144 See Peter Blanck, ‘eQuality: The Right to the Web’ in Peter Blanck and Eilionóir Flynn (eds), Routledge Handbook of Disability Law and Human Rights (Routledge 2017) 166–94, eg in Azerbaijan, under an initiative with the UNDP, the government set up computer centers for visually impaired and poor eye-sight people—see Initial Report submitted by Azerbaijan UN Doc CRPD/C/AZE/1 (7 February 2013) para 55; see Jonathan P Bowen, ‘Web Access to Cultural Heritage for the Disabled’, available at: . 134 135
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
883
4.4 Paragraph (1)(c) Article 30(1)(c) emphasized the right of persons with disabilities to enjoy access to locations for cultural performances or services, including access to monuments and sites of national cultural importance.145 The clear objective of article 30(1)(c) is to remove any architectural barriers that may hinder the enjoyment of the right.146 It entails positive obligations to reasonably accommodate the needs of persons with disabilities in terms of their physical access to cultural institutions, libraries, and other venues of cultural services.147 And while the CRPD Committee acknowledges the potential difficulty in the provision of access to cultural and historical monuments that form part of national heritage, article 30(1)(c) imposes an obligation on states parties to strive to provide access to these sites in a manner that ‘preserves their cultural and historical identity and uniqueness’.148 In India, for instance, efforts were underway to render five of its World Heritage Sites, including the Taj Mahal and the Agra Fort, accessible by providing access pathways, toilets, tactile maps, and Braille signage.149 Where modifications of buildings and structures are not feasible, states should explore alternative methods to render cultural services accessible.150 Similar to paragraph (1)(b), legislation and administrative orders have played a significant role in promoting compliance with paragraph 1(c). In Croatia, a set of standards have been adopted to regulate access to museums and galleries.151 In Hungary, legislation has been passed prescribing obligations to ensure equal opportunities for persons with disabilities in accessing cultural heritage.152 In Azerbaijan, laws exist prescribing fines and penalties for enterprises and institutions that fail to provide access to persons with disabilities.153 Similarly, the UK’s Equality Act 2010 requires service providers to reasonably accommodate access to cultural institutions, sites, and other cultural services and facilitates.154 In Canada, the Human Rights Tribunal of Ontario, in Turnbull v Famous Players Inc found that the defendant, a movie theatre franchise, discriminated against wheelchair users by failing to render their theatres accessible to them.155 It further ordered the franchise to provide such access and other appropriate facilitates within two years of the ruling.156 Obligations stemming from this sub-section may also involve formalizing into the curriculum of architecture, elements that relate to addressing the needs of peoples with disabilities. This occurred in France where it is a requirement that the accessibility of buildings for persons with disabilities form part of all architecture courses offered by colleges and universities.157 It also offered training for professionals in the field of culture CRPD Committee, ‘General Comment No 2’ paras 16, 46. Luigino Manca, ‘Article 30 Participation in Cultural Life, Recreation, Leisure and Sport’ in Valentina Della Fina, Rachele Cera, Giuseppe Palmisano (eds), The United Nations Convention on the Rights of Persons with Disabilities: A Commentary (Springer 2017) 545. 147 CESCR, ‘General Comment No 5’ para 36. 148 CRPD Committee, ‘General Comment No 2’ para 45. 149 See Initial Report submitted by India UN Doc CRPD/C/IND/1 (6 October 2017) para 264. 150 In Armenia, for instance, programmes were implemented to provide access to library services through home visits, see Initial Report submitted by Armenia para 274. 151 Initial Report submitted by Croatia (7 May 2013) para 204. 152 Initial Report submitted by Hungary UN Doc CRPD/C/HUN/1 (28 June 2011) para 236. 153 154 Initial Report submitted by Azerbaijan para 43. See Equality Act 2010. 155 156 Turnbull v Famous Players Inc (2001) 40 CHRR D/333. ibid. 157 Council of Europe (n 65) 49. 145 146
bantekas, stephenson chow, karapapa, and polymenopoulou
884
Participation in Cultural Life, Recreation, Leisure, and Sport
to understand how buildings and other structures could be designed to comply with accessibility standards.158 Sweden began to introduce accessibility into its cultural heritage curriculum at some of its universities as a way to ensure future professionals in the field realise the importance of such issues.159 The principle of progressive realization which applies to economic, social, and cultural rights may require minimum standards and guidelines to be established so as to require all new cultural facilities and services to be designed accessible.160 This is practiced in Australia where the Disability (Access to Premises— Buildings) Standards 2010 imposes accessibility requirements for all ‘new buildings’ (ie those purported to be built after 2011).161 Similarly, in 2012 and 2013, Montenegro published its Action Plan for Persons with Disabilities, providing for all new sports, recreational and cultural facilities as well as monuments and sites of cultural importance to be built to cater for the needs of persons with disabilities.162 It was noted that in Poland, more than 50 per cent of art galleries, theatres, and music institutions currently have facilities for persons with disabilities.163
5. Paragraph 2 5.5.1 To Develop and Utilize One’s Creative, Artistic, and Intellectual Potential The obligation to ensure opportunities for person with disabilities ‘to develop and utilize their creative, artistic, and intellectual potential’ as provided in article 30(2) CRPD recognizes the inherent potential of every individuals with disabilities to the fullest self- development and realization on equal footing with others. This is reflected in Rule 10 of the Standard Rules.164 The capacity of persons with disabilities for achieving high levels of artistic, creative and intellectual attainment is often overlooked because of negative attitudes and stereotypes that continue to persist,165 preventing societies from recognizing their gifts and talents as well as their determination to excel.166 To think of persons with disabilities as lacking the capacity to pursue creative, artistic, and intellectual activities is, of course, a false impression. In fact, it is not difficult to recall some of the greatest artists in the world who suffer from some form of disability, even if it required a strong resolve to overcome them. In this context, it is also important to note that article 30(2) presumes that every individual
159 ibid. Initial Report submitted by Sweden, para 290. See Council of Europe (n 65) 17. 161 See Disability (Access to Premises—Buildings) Standards 2010, available at: . 162 163 ibid 60. ibid 63. 164 UNGA Res 48/96, ‘Standard Rules on Equalization of Opportunities for Persons with Disabilities’ (20 December 1993) rule 10. 165 Degener (n 107) 33. 166 While individuals may be impaired in one way, they may be gifted in another. For eg visual impairment may not affect an individual’s ability to appreciate and perform music. In fact, many great music performer do suffer visual impairment. Other cases reveal impressive efforts by individuals who would overcome their disabilities in pursuance of artistic excellence. One such example is a now world-renowned play entitled ‘Thousand Hands Guanyin’ performed by 63 Chinese hearing-impaired dancers from the China Disabled People’s Performing Art Troupe (CDPPAT). In the performance, these dancers displayed exceptional levels of coordination and synchronization, overcoming the fact that they cannot actually hear the music to the dance but could only to feel its vibration. 158 160
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
885
has the ability to enjoy culture as well as the potential for creative, artistic, and intellectual pursuits, which equally applies to persons with intellectual disabilities and developmental disorders whose intellectual development and ability to perceive art and creativity may be nurtured by their equal access to and participation in cultural life. In a project entitled ‘Further Education for People with Intellectual Disabilities’, which brought together institutions from nine European countries, art workshops on painting, drawing, sculpture, music and handcraft were offered to persons with intellectual disabilities.167 It was observed that ‘[H]aving an intellectual disability does not influence a person’s various abilities and interests. Such people often have the same artistic potential as anyone else and can become artists.’168
5.5.2 Eliminating Social Barriers and Promoting an Inclusive Society Persons with disabilities may easily suffer from prejudice when, for instance, wishing to display their art work or acquire a role in cultural performances. And if social attitude is prejudicial against individuals with disabilities, their chances of success in these areas may be denied. Thus, one important aspect of article 30(2) is the obligation on the part of states to remove social barriers that hinder the participation in and contribution to cultural life.169 This necessarily implies a positive duty to build a more inclusive society, thereby creating a more favourable environment for persons with disability to participate in cultural life. To promote inclusion, however, ‘is not about inserting persons with disabilities into existing structures, but about transforming systems to be inclusive of everyone’.170 It requires states parties to render available public sensitivity programmes and to introduce suitable elements into the mainstream education with a view to fostering a respect for diversity,171 and a better understanding of the ‘culture’ of persons with disabilities.172 In this context, it is important that states ensure that the provision of resources devoted to facilitating access to cultural life will not be implemented in a way reinforcing the traditional medical model (eg by portraying their participation in cultural life as ‘therapeutic’ or ‘rehabilitative’), but on the basis that persons with disabilities have the capacity to take part in and contribute to culture/cultural life as co-equals and as full participants of cultural life, such that their participation is ‘not only for their own benefit, but also for the enrichment of the society’,173 as expressed in article 30(2). In fact, states such as the United Kingdom have dedicated efforts to raise the profile of disabled persons in arts through schemes supported by their Arts Council.174 In 167 Das Land Steiermark, ‘Organizing Art Workshops for People with Intellectual Disabilities’, available at: . 168 169 ibid 8. CESCR, ‘General Comment No 5’ para 38. 170 UNICEF, ‘Children with Disabilities: Ending Discrimination and Promoting Participation, Develop ment and Inclusion: Programme Guidance Note’ (2007). 171 CESCR, ‘General Comment No 5’ para 38: ‘In order to facilitate the equal participation in cultural life of persons with disabilities, Governments should inform and educate the general public about disability. In particular, measures must be taken to dispel prejudices or superstitious beliefs against persons with disabilities, for example those that view epilepsy as a form of spirit possession or a child with disabilities as a form of punishment visited upon the family. Similarly, the general public should be educated to accept that persons with disabilities have as much right as any other person to make use of restaurants, hotels, recreation centres and cultural venues.’ 172 173 See Art 30(4) CRPD. Art 30(2) CRPD. 174 Initial Report submitted by the United Kingdom UN Doc CRPD/C/GBR/1 (3 July 2013) para 328; see also Initial Report submitted by Singapore UN Doc CRPD/C/SGP/1 (30 June 2016) para 25.5.
bantekas, stephenson chow, karapapa, and polymenopoulou
886
Participation in Cultural Life, Recreation, Leisure, and Sport
Lithuania, events have been organized to mark the anniversaries of important writers who were visually impaired and to promote their works.175 The Japanese government undertakes efforts to identify and promote excellent art works of disabled artists to the public.176 In Turkey, culture and art activities were held to cater for persons with intellectual disabilities, thereby acknowledging their role in the contribution of cultural life.177 In addition, states should also seek to promote their cultural pursuits in the mainstream media. In Montenegro, programmes were initiated to train media workers in promoting a better understanding of the creative potential of persons with disabilities.178 States could also set up awards for disabled artists so as to recognize their contributions to the cultural life of the society as a whole. To build an inclusive society further implies that states should ensure their participation in the decision-making processes of cultural policies affecting them through effective and meaningful consultations.179
5.5.3 Providing Equal Opportunities in the Field of Culture Educating the public under article 30(2) implies positive obligations to ensure equal opportunities in the field of culture. For instance, disability may imply that specialized forms of training are required for their creative, artistic, and intellectual pursuits, which means that the opportunity to develop their potential to the fullest would be hindered by a lack of specialized coaches and instructors. On other occasions, these pursuits may be inhibited because of the lack of funds. States should thus ensure that specialized training for persons with disabilities in cultural pursuits is available at affordable cost. They should also provide opportunities for individuals with disabilities to showcase their artwork and participate in cultural performances, especially when cultural productions involving persons with disabilities struggle to commercialize. For instance, in the UK, efforts to promote the work of disabled artists were carried out through the backing of lottery funds.180 The European Union finances projects that engage in ‘cultural education, training and employment of persons with disabilities in the field of culture’.181 In Lithuania, the government actively organizes visually impaired authors to participate in international and national conferences.182 Outside of Europe, the Welfare of Disabled Persons Act and the Culture and Arts Promotion Act of Korea require the state and local governments to ‘maintain and financially support facilities, equipment, and other environments for cultural, physical, artistic, and educational activities in order to promote the participation of persons with disabilities in those activities.’183 Meanwhile, the Basic Act for Persons with Disabilities in Japan ‘provides that national and local governments must develop facilities, equipment . . . subsidize activities relating to culture, art and sports, and take other measures so that persons with disabilities can satisfy their desire for or be motivated by culture, or can independently and positively engage in sports or recreation’.184 In Costa Rica, the Initial Report submitted by Lithuania para 286. Initial Report submitted by Japan UN Doc CRPD/C/JPN/1 (4 October 2017) para 194. 177 Initial Report submitted by Turkey UN Doc CRPD/C/TUR/1 (4 October 2017) para 303. 178 Council of Europe (n 65) 60. 179 See CESCR, ‘General Comment No 21’ para 15(c) ‘Contribution to cultural life . . . is supported by the right to take part in the . . . definition, elaboration and implementation of policies and decisions that have an impact on the exercise of a person’s cultural rights’. 180 181 Initial Report submitted by the UK para 328. Council of Europe (n 65) 70. 182 Initial Report submitted by Lithuania para 294. 183 Initial Report submitted by the Republic of Korea para 150. 184 Initial Report submitted by Japan para 192. 175 176
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
887
Ministry of Culture publishes an annual call for proposals to subsidize cultural activities; one of the selection criteria for such grants is the participation of persons with disabilities in these programmes.185 For many, the process of nurturing and developing one’s interest in culture begins at an early age. General Comment No 9 of the CRC Committee recognizes that ‘children with disability should be provided with equal opportunities to participate in various cultural and arts activities as well as sports. These activities must be viewed as both medium of expression and medium of realizing self-satisfying, quality of life.’186 General Comment No 17 of the CRC Committee provides that ‘state parties should promote opportunities for children with disabilities, as equal and active participants in play, recreation and cultural and artistic life’.187 Thus, in Moldova, competitions, workshops and festivals were organized by the Ministry of Culture to encourage the participation of children with disability in cultural activities.188 One such initiative was the National Dance Festival, organized for children with hearing disabilities.189 Their national philharmonic orchestra also organizes annual music festivals and contests attended by children and young persons with disability.190 In other states like Armenia, cultural education was brought to children with special needs residing in special boarding schools and children’s homes, providing free instruction of arts and other crafts.191 General Comment No 17 of the CRC Committee further stresses the importance of awareness-raising among adults as to the significance of such activities for children with disabilities and calls upon states to provide age-appropriate support and assistance.192 A document commissioned by the Council of Europe (CoE) recommended that governments of the CoE should ‘[t]ake appropriate measures to ensure that education of children and teenagers with disabilities in an inclusive setting contributes to and is used for the development and promotion of their creative, artistic, intellectual and athletic potential, and that it encourages them to take part in culture, sports and leisure activities, on both an active and a passive basis, from the earliest age’,193 further recognizing that for many children with disabilities, formal schooling represents the earliest opportunity to be exposed to art and culture. General Comment No 17 of the CRC Committee also took note of the importance for children with disabilities of play and cultural activities in the mainstream school system and further calls upon states to adopt ‘pro-active measures . . . to remove barriers and promote accessibility to and available of inclusive opportunities for children with disabilities to participate in all these activities’.194 Thus in Thailand, for instance, the Ministry of Culture provides courses on drama and music for students in auricular schools and education centres.195 Similarly, summer camps were organized in Ukraine for children with disabilities with a view to develop their creative capacities.196 In addition, research in the field of education have been undertaken with the view to equipping art teachers with the knowledge about the wide array of solutions for students with varying forms of disabilities, including children with learning and Initial Report submitted by Croatia para 200. CRC Ctee, ‘General Comment No 9’ para 71. 187 188 CRC Ctee, ‘General Comment No 17’ para 24. Council of Europe (n 65) 60. 189 190 191 ibid. ibid. Initial Report submitted by Armenia para 274. 192 193 CRC Ctee, ‘General Comment No 17’ para 24. Council of Europe (n 65) 83. 194 CRC Ctee, ‘General Comment No 17’ para 50. 195 Initial Report submitted by Thailand UN Doc CRPD/C/THA/1 (30 January 2015) para 173. 196 Initial Report submitted by Ukraine 321. 185 186
bantekas, stephenson chow, karapapa, and polymenopoulou
888
Participation in Cultural Life, Recreation, Leisure, and Sport
intellectual disabilities.197 Other research has sought to develop video games for children with cognitive, learning, or intellectual disabilities with a view to facilitate their appreciation of culture.198 States should continue to invest in similar efforts to identify more effective solutions to facilitate disabled people’s access to culture and to devise methodologies and curriculum aimed at enhancing their participation in cultural life.
6. Paragraph 3 6.1 The Debates on Intellectual Property in the Travaux Free access of disabled individuals to cultural goods ensures their equal participation in cultural life. As the World Blind Union (WBU) acknowledged during the third session of the CRPD negotiations, access of disabled individuals to cultural goods without hindrance from restrictive intellectual property laws is of utmost importance for deafblind, blind and visually impaired persons. Indeed, unless specific exceptions to intellectual property rights permit certain uses for the benefit of disabled persons, any use of cultural materials that enables access, such as copying a book in Braille, Moon, or audio format, would amount to an infringement of intellectual property rights. It is in this light that intellectual property could be seen as a barrier to accessing cultural materials. Whilst most countries may have some exceptions to intellectual property rights for the benefit of the disabled in their national laws,199 the need for an international instrument permitting the cross-border distribution of copies in accessible formats was identified as far back as the 1980s. Beyond proposals and studies, however, no concrete action was taken. For instance, on 25–27 October 1982, a WIPO and UNESCO Working Group on access by the visually and auditory handicapped to material reproducing works protected by copyright published a report outlining ‘model exceptions for national copyright laws’ and highlighting concerns about the lack of a mechanism to facilitate access by disabled persons to copyright works.200 For several years, these concerns had not attracted significant international interest,201 even though they were also raised in further studies and reports prepared in response to the so-called ‘disability agenda’.202 197 Mari B Coleman and Elizabeth S Cramer, ‘Creating Meaningful Art Experiences with Assistive Technology for Students with Physical, Visual, Severe, and Multiple Disabilities (2015) Art Education 6. 198 Initial Report submitted by Azerbaijan para 55. 199 Examples include: section 121 Title 1 17 US Code (United States); Art 5(3)(b) of Directive 2001/29/ EC of the European Parliament and of the Council of 22 May 2001 on the harmonization of certain aspects of copyright and related rights in the information society, Official Journal L 167, 22 June 2001 10–19 (European Union); Decree No 2017-253 of 27 February 2017, on the Exception to Copyright, Related Rights and the Rights of Database Producers for People with Disabilities (France); section 45a, Copyright Act of 9 September 1965 (Federal Law Gazette I, 1273), as last amended by Article 1 of the Act of 20 December 2016 (Federal Law Gazette I 3037) (Germany); sections 31A-31F of the Copyright, Designs, and Patents Act 1988 (United Kingdom). 200 Working Group on Access by the Visually and Auditory Handicapped to Material Reproducing Works Protected by Copyright, Report UNESCO/WIPO/WGH/I/3, Paris 3 January 1983, available at: . 201 Abigail Rekas, ‘Tracking The Progress of the Proposed WIPO Treaty on Exceptions and Limitations to Copyright to Benefit Persons with Print Disabilities’ (2013) 4 European Yearbook of Disability Law 45. 202 See eg in this regard Sam Ricketson, WIPO Study on Limitations and Exceptions of Copyright and Related Rights in the Digital Environment (WIPO 2003), available at: ; Nic Garnett, WIPO Study on Automated Rights Management Systems and Copyright Limitations and Exceptions (WIPO 2006), available at: .
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
889
At a broader level, article 30 is important as it brings forward questions on the theoretical relationship between intellectual property rights, human rights, and—more specifically—the rights of the disabled. Being complex and subtle,203 it has become the subject of scholarly debate. Some scholars argue that intellectual property rights constitute a form of fundamental human rights,204 while others suggest that some forms of intellectual property rights are equivalent to human rights.205 Others contend that they are a barrier to the realization of fundamental human rights.206 There is consensus, however, on the need to effectively weigh and balance these regimes of rights through appropriate policy and regulatory frameworks,207 with a body of scholarship suggesting that, in the event of conflict, human rights should prevail over intellectual property rights. Drahos, for instance, argues that intellectual property rights are ‘instrumental rights’ whereas human rights are ‘fundamental rights’ that need to take precedence.208 The UK Commission on Intellectual Property rights has also concluded in its report entitled ‘Integrating Intellectual Property Rights and Development Policy’ that ‘the intellectual property right is best viewed as one of the means by which nations and societies can help to promote the fulfilment of human economic and social rights’.209 In the event of conflict between human rights and intellectual property systems, the UN Commission on Human Rights unequivocally urges governments to adopt provisions for the protection of the social function of intellectual property.210 Indeed, intellectual property laws lay down sets of rights that grant authors and owners the power to authorize or exclude others from carrying out certain activities by reference to their protected products 203 For a general discussion see Jingyi Li and Niloufer Selvadurai, ‘Reconciling the Enforcement of Copyright with the Upholding of Human Rights: A Consideration of the Marrakesh Treaty to Facilitate Access to Published Works for the Blind, Visually Impaired and Print Disabled’ (2014) 36, European Intellectual Property Review 653–64. 204 Harry Goldsmith, ‘Human Rights and Protection of Intellectual Property’ (1968) 12 Trademark and Copyright Journal of Research and Education 889; Audrey R Chapman, ‘Approaching Intellectual Property as a Human Right: Obligations Related to Article 15 (1)(c)’ in Evgueni Guerassimov (ed), Approaching Intellectual Property as a Human Right (UNESCO Publishing 2001) 4. 205 Peter K Yu, ‘Intellectual Property and Human Rights in the Non-multilateral Era’ (2012) 64 Florida Law Review 1045, 1070; Paul Torremans, ‘Is Copyright a Human Right?’ (2007) Michigan State Law Review 271; Mirela V Hristova, ‘Are Intellectual Property Rights Human Rights?: Patent Protection and the Right to Health’ (2011) 93 Journal of the Patent and Trademark Office Society 339; Rochelle Cooper Dreyfuss, ‘Patents and Human Rights: Where is the Paradox?’ (2010) New York University, Law and Economics Research Paper No 06-38. 206 See eg Benjamin Kaplan, An Unhurried View of Copyright (Columbia University Press 1967) 2. The position of the CESCR is that intellectual property rights and human rights are of intrinsically different natures; see CESCR, General Comment No 17: ‘The Right of Everyone to Benefit from the Protection of the Moral and Material Interests Resulting from Any Scientific, Literary or Artistic Production of which He Is the Author’ UN Doc E/C 12/GC/17 (12 January 2006) para 2. 207 See further David Weissbrodt and Kell Schoff, ‘The Sub-Commission’s Initiative on Human Rights and Intellectual Property’ (2004) 22 Netherlands Quarterly of Human Rights 181; Daniel J Gervais, ‘TRIPS and Development’ in Daniel J Gervais (ed), Intellectual Property, Trade and Development (OUP 2007). 208 See Peter Drahos, ‘The Universality of Intellectual Property Rights: Origins and Development’ in Intellectual Property and Human Rights (WIPO 1999) 13–41, available at: ; contra Sharon E Foster, ‘Prelude to Compatibility between Human Rights and Intellectual Property’ (2008–09) 9 Chicago Journal of International Law 171, 173. 209 Commission on Intellectual Property Rights (UK), Integrating Intellectual Property Rights and Development Policy (2002), available at: . 210 OHCHR ‘Intellectual Property and Human Rights’, Sub-Commission on Human Rights Res 2001/21 (16 August 2001).
bantekas, stephenson chow, karapapa, and polymenopoulou
890
Participation in Cultural Life, Recreation, Leisure, and Sport
of intellect: this includes copying protected subject-matter, issuing copies to the public, or lending and renting. Intellectual property rights are usually drafted as exclusive property rights. The Universal Declaration of Human Rights states that ‘(e)veryone has the right to the protection of the moral and material interests resulting from any scientific, literary or artistic production of which he is the author’.211 There are instances, however, where the exercise of human rights and fundamental freedoms—and the realization of public policy objectives—come in conflict with intellectual property rights. Examples include freedom of expression in light of parodied versions of copyright protected materials, or disability rights in light of the need to copy copyright materials in accessible formats, such as talking books, or materials copied in Braille, Moon, or audio formats. In cases where a conflict arises between private entitlements resulting from intellectual property rights and public interest objectives, including fundamental human rights, intellectual property rights often play second fiddle. There are indeed specific provisions included in intellectual property laws, the so-called permitted uses, that allow certain users to carry out activities that would otherwise result in infringement. These permitted uses represent a balancing act between the private interests of intellectual property owners and public policy objectives, including the protection of fundamental human rights.
6.2 ‘all appropriate steps’ State parties to the CRPD should ensure that disabled persons have the opportunity to utilize their creative, artistic, and intellectual potential to the greatest possible extent, and—to this end—access to cultural activities should be ensured. If necessary, special arrangements should be made to meet the needs of individuals with mental or sensory impairments, including communication aids for the deaf, literature in Braille and/or cassettes for the visually impaired and reading material adapted to the individual’s mental capacity. The domain of cultural activities includes dance, music, literature, theatre, and plastic arts.212 The implementation of article 30(3) CRPD raises an obligation on member states to adopt appropriate measures with a view to ensuring that such essential uses shall be available. Although it is not specified what such ‘appropriate steps’ could be, these most commonly take the form of permitted uses under intellectual property laws. The obligation imposed by article 30(3) on state parties is limited in that it covers use of cultural materials only. In the third session, Australian NGOs suggested that the article should cover ‘all information, not just cultural information’ and that hence it would be opportune to deal with the issue as a matter of ‘accessibility’. Indeed, the interplay between intellectual property and rights of disabled individuals has largely to do with the need to enhance access to cultural materials, especially in the context of copyright protected works. The suggestion of Australian NGOs did not make its way in the final version of the Convention, however. Article 30(3) is meant to cover cultural materials only and, in this light, it is more relevant to copyright law, compared to other intellectual property rights. Article 30(3) does not create a positive obligation on governments to introduce a specific provision into their national intellectual property laws; instead, it creates a generic obligation, according to which state parties should ensure that ‘intellectual property
211 212
UDHR Art 27(2); also see the very similar provision included in Art 15(1)(c) ICESCR. Plastic arts include three-dimensional and visual arts (paintings, sculptures, films, photographs).
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
891
rights do not constitute an unreasonable or discriminatory barrier to access by persons with disabilities to cultural materials’. This generic obligation has become mandatory in the aftermath of the Marrakesh Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired or Otherwise Print Disabled.213 This treaty (also known as VIP Treaty) was signed in 2013 under the auspices of the World Intellectual Property Organization (WIPO) and it came into effect on 30 September 2016. In this light, it helps achieve the objectives of article 30(3) CRPD, having as its main goal ‘to create a set of mandatory limitations and exceptions for the benefit of the blind, visually impaired, and otherwise print disabled (VIPs)’.214 In line with the human rights protection outlined in the Universal Declaration of Human Rights and the Convention on the Rights of Persons with Disabilities, the Marrakesh Treaty upholds the principles of non-discrimination, accessibility, equal opportunity, and effective participation in society, whilst affirming the importance of protecting copyright as a reward for creation. The treaty delineates precise minimum standards of mandatory exceptions to copyright for the benefit of the blind, visually impaired, and print disabled. To this end—and unlike other multilateral international instruments that harmonise intellectual property rights in general—the VIP Treaty offers a vertical form of protection by specifically outlining a framework of exceptions and limitations to domestic copyright laws that permit certain uses of works from the blind, visually impaired, and print disabled. This includes making works available in accessible formats, such as Braille display and DAISY navigation. Domestic laws tend to include relevant provisions that allow copying that takes place with a view to enhancing accessibility of the disabled to cultural goods. At the European level, an exception that permits copying works, and making them available, in formats accessible to the disabled is permitted under article 5(3)(b) of the 2001 Information Society Directive.215 This article reads: ‘Member states may provide for exceptions or limitations to the rights provided for in articles 2 and 3 in the following cases: (b) uses, for the benefit of people with a disability, which are directly related to the disability and of a non-commercial nature, to the extent required by the specific disability.’ Although this article is merely optional for EU member states to implement, various domestic laws include relevant provisions.216 For instance, UK copyright law specifically addresses disability. Following joint lobbying from the publishing industry, the National Library for the Blind (NLB) and the Royal National Institute of Blind People (RNIB), an exception to copyright was included in the Copyright (Visually Impaired Persons) Act 2002 (CVIPA 2002).217 The relevant provision had the effect that accessible copies of a literary, dramatic, musical, or artistic work may be made by or for visually impaired
213 A detailed analysis of the Marrakesh Treaty is available at: Laurence R Helfer, Molly K Land, Ruth L Okediji, and Jerome H Reichman, The World Blind Union Guide to the Marrakesh Treaty (OUP 2017). 214 See WIPO website, available at: . 215 See Art 5(3)(b) of Directive 2001/29/EC of the European Parliament and of the Council of 22 May 2001 on the harmonisation of certain aspects of copyright and related rights in the information society, Official Journal L 167, 22 June 2001 10–19 (Information Society Directive). 216 See indicatively Lucie Guibault et al, ‘Study on the Implementation and Effect in Member States’ Laws of Directive 2001/29/EC on the Harmonisation of Certain Aspects of Copyright and Related Rights in the Information Society’ (IvIR, 2007) 17 et seq; also see . 217 In force since 31 October 2003.
bantekas, stephenson chow, karapapa, and polymenopoulou
892
Participation in Cultural Life, Recreation, Leisure, and Sport
persons without the consent of the copyright owner.218 The exception related not only to visual impairment but extends to persons who are unable to hold a book.219 More recently, however, the 2014 reform of UK copyright law came with an expansion of the scope of permitted uses for disabled individuals. Under the new provisions, which are incorporated in sections 31A to 31F of the Copyright, Designs, and Patents Act, ‘ “disabled person” means a person who has a physical or mental impairment which prevents the person from enjoying a copyright work to the same degree as a person who does not have that impairment, and “disability” is to be construed accordingly’. This means that the new provisions cover other types of impairment too, such as dyslexia. By virtue of the change of the law, the subject matter that can be copied into an accessible format is also much broader, covering a whole range of content, such as films and broadcasts. Although it is only legal to copy material if suitable accessible copies are not available, a wide set of activities is permitted including making Braille, audio, or large-print copies of books, newspapers, or magazines for visually impaired people; making subtitled films or broadcasts for deaf or hard of hearing people and adding audio descriptions to the same subject matter for visually impaired people; and making accessible copies for dyslexic individuals. An exception for the benefit of the disabled is also available under US copyright law. Section 121 of the US Copyright Code introduces a specific exception for reproductions for the blind or other people with disabilities,220 supplementing the general ‘fair use’ doctrine221 available under US copyright law. Under this doctrine, which lays down a judicial test to determine which uses are permitted or not on a case-by-case basis, the interests of disabled individuals may be taken into consideration. The landmark Google Books case222 illustrates this point. In this case, Google’s unauthorized digitizing of millions of copyright-protected works, the creation of a search functionality, and display of snippets from those works were held to be non-infringing fair uses. As Judge Chin of the US District Court for the Southern District of New York observed in his opinion, Google Books expands access to books since traditionally underserved populations will benefit as they gain knowledge of and access to far more books. Google Books provides print-disabled individuals with the potential to search for books and read them in a format that is compatible with text enlargement software, text-to-speech screen access software, and Braille devices. Digitization facilitates the conversion of books to audio and tactile formats, increasing access for individuals with disabilities.223
Subject to limitations: see ss 81–83, Copyright, Designs, and Patents Act (CDPA) 1988. The (then) section 31F(9): ‘ “Visually impaired person” means a person-(a) who is blind; (b) who has an impairment of visual function which cannot be improved, by the use of corrective lenses, to a level that would normally be acceptable for reading without a special level or kind of light; (c) who is unable, through physical disability, to hold or manipulate a book; or (d) who is unable, through physical disability, to focus or move his eyes to the extent that would normally be acceptable for reading.’. 220 Section 121 Title 1 17 USC. 221 17 USC § 107—Courts shall consider four factors to determine a permissibility of a use: 218 219
the purpose and character of the use, including whether such use is of a commercial nature or is for nonprofit educational purposes; the nature of the copyrighted work; t he amount and substantiality of the portion used in relation to the copyrighted work as a whole; and the effect of the use upon the potential market for or value of the copyrighted work. 222 See The Author’s Guild et al v Google Inc, 05 Civ 8136 (DC) 2013 WL 6017130 at 11 (SDNY 14 November 2013). 223 ibid; The Authors Guild et al v Google Inc, 13-4829-cv (2d Cir 16 October 2015).
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
893
The Second Circuit affirmed the fair use finding in October 2015,224 holding that the project provides a public service without violating intellectual property law. The US Supreme Court declined to review the case,225 leaving the lower court’s decision standing. The Google Books case follows yet another decision affirming fair use of copyright materials for the benefit of the print disabled. This is the HathiTrust case.226 Print disability was there defined as ‘any disability that prevents a person from effectively reading printed material. Blindness is one example, but print disabilities also include those that prevent a person from physically holding a book or turning pages.’227 In this case, the Second Circuit held that access of materials scanned by the Google Books project and made available to affiliate libraries of the HathiTrust project qualified as fair use. In this light, it affirmed in part the decision of the US District Court228 and upheld the principles of equality of opportunity, full participation, independent living, and economic self-sufficiency that the Americans with Disabilities Act aims to preserve.229
6.3 ‘in accordance with international law’ Although there is a web of international law provisions ensuring that everyone shall enjoy the right to equal participation in cultural life without discrimination,230 the relationship between human rights, intellectual property, and disability was first addressed at the international level in article 30 CRPD. It is, however, supplemented by the ‘soft-law’ provisions incorporated in other international instruments that may not address intellectual property, or copyright, directly but represent a strong political and moral commitment of governments to take action with a view to ensuring that disabled individuals are given equal opportunities. This broad moral framework that applies to the abled in relation to
224 The Author’s Guild et al v Google Inc, 05 Civ 8136 (DC) 2013 WL 6017130 at 11 (SDNY 14 November 2013) 11. 225 The Authors Guild et al v Google Inc, 13-4829-cv (2d Cir 16 October 2015). 226 The Authors Guild v HathiTrust, 902 F Supp 2d 445 (SDNY 10 October 2012), aff’d in part in The Authors Guild v HathiTrust (2d Cir 10 June 2014). 227 The Authors Guild v HathiTrust (2d Cir 10 June 2014) 7–8. 228 The Author’s Guild et al v HathiTrust et al, 11 CV 6351 (HB) at 21 (SDNY 14 November 2013) 21. 229 42 USC § 12101(7); similarly, the Chafee Amendment demonstrates Congress’s intent that copyright law make appropriate accommodations for blind and print-disabled individuals; see 17 USC § 121. 230 See eg Art 15(1)(a) ICESCR: ‘The States Parties to the present Covenant recognize the right of everyone: (a) To take part in cultural life’; Art 5(e)(vi) CERD reads: ‘In compliance with the fundamental obligations laid down in article 2 of this Convention, States Parties undertake to (. . .) guarantee the right of everyone, without distinction as to race, colour, or national or ethnic origin, to equality before the law, notably in the enjoyment of the following rights: . . . (e) Economic, social and cultural rights, in particular: (vi) The right to equal participation in cultural activities.’ Other soft-law responsibilities arising from international law can be found in the Declaration on the Rights of Disabled Persons (1975), UNGA Res 3447 (XXX) (9 December 1975); the World Programme of Action Concerning Disabled Persons (1982), UNGA Res 37/52 (3 December 1982); the Resolution regarding Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care (1991), UNGA Res 46/119 (17 December 1991), regarding Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care, available at: ; and the Resolution regarding the Standard Rules on the Equalisation of Opportunities for Persons with Disabilities (1993), UNGA Res 48/96 (20 December 1993), regarding the Standard Rules on the Equalisation of Opportunities for Persons with Disabilities.
bantekas, stephenson chow, karapapa, and polymenopoulou
894
Participation in Cultural Life, Recreation, Leisure, and Sport
the disabled ought to take into account formal obligations arising from international instruments on intellectual property law, including copyright.231 There are important treaties laying down minimum standards of intellectual property protection at international level. Patent protection is offered through the Paris Convention 1883,232 the Patent Law Treaty 2000,233 and the Patent Cooperation Treaty 1970.234 Trade marks are protected in the Paris Convention 1883,235 the Trademark Law Treaty 1994,236 and the Madrid Agreement 1891,237 and the Madrid Protocol 1989.238 The most relevant intellectual property right that is affected in the context of access to cultural materials is copyright and there has been an ongoing discussion about introducing this term instead of the broader term intellectual property in article 30 CRPD. Copyright also derives from a framework of international treaties. The oldest of these is the Berne Convention of 1886,239 which lays down the substantive minima of protection. In its latest revised version, it stipulates fifty years post mortem actuoris (after the death of the author) as a minimum term of protection for the author of a work)240 and lays down exclusive rights, such as the right to reproduce his/her own work. These rights are subject to a narrow set of exceptions and limitations241 that are justified on the basis of fundamental rights or public policy reasons. It is the exceptions and limitations that would permit users—abled or disabled—to access, reproduce, and create cultural works because they go beyond the copyright holder’s property right (scope limitations) or serve as defences for a particular use (copyright exceptions). The few exceptions available in the Berne Convention do not expressly permit uses of works for the benefit of the disabled, as they are too narrow in scope. Although the few exceptions available in the Berne Convention do not expressly permit uses of works for the benefit of the disabled, general provisions offered in this Convention do allow contracting states to include exceptions to the reproduction rights if a three-step test is satisified:242 1 . concerns only certain special cases; 2. does not conflict with a normal exploitation of the work; and 3. does not unreasonably prejudice the legitimate interests of the author.
231 See in general Thomas Cottier et al (eds), Human Rights and International Trade (OUP 2005); Uma Suthersanen, ‘Towards an International Public Interest Rule? Human Rights and International Copyright Law’, in Jonathan Griffiths and Uma Suthersanen (eds), Copyright and Free Speech: Comparative and International Analyses (OUP 2005). 232 Paris Convention for the Protection of Industrial Property 1883 (as amended on 28 September 1979). 233 Patent Law Treaty (adopted at Geneva on 1 June 2000). 234 Patent Cooperation Treaty (done at Washington on 19 June 1970, amended on 28 September 1979, modified on 3 February 1984, and on 3 October 2001). 235 Paris Convention for the Protection of Industrial Property 1883 (as amended on 28 September 1979). 236 Trademark Law Treaty (adopted at Geneva on 27 October 1994). 237 Madrid Agreement Concerning the International Registration of Marks 1891 (as amended on 28 September 1979). 238 Protocol Relating to the Madrid Agreement Concerning the International Registration of Marks 1989 (adopted at Madrid on 27 June 1989, as amended on 3 October 2006 and on 12 November 2007). 239 Berne Convention for the Protection of Literary and Artistic Works 1886 (completed at Paris on 4 May 1896, revised at Berlin on 13 November 1908, completed at Berne on 20 March 1914, revised at Rome on 2 June 1928, at Brussels on 26 June 1948, at Stockholm on 14 July 1967, and at Paris on 24 July 1971, and amended on 28 September 1979). 240 241 ibid Art 7(1). ibid Art 9. 242 See indicatively Martin Senftleben, Copyright, Limitations and the Three-Step Test (Kluwer 2004); Jonathan Griffiths, ‘Rhetoric and the “Three-Step Test”: Copyright Reform in the United Kingdom’ (2010) 32 European
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
895
The three-step test, was also repeated in the TRIPS Agreement, which expands the test to all exclusive rights, whilst taking a narrower approach by stipulating that members should ‘confine limitations or exceptions to exclusive rights to certain special cases . . . .’.243 There has been a pronounced reluctance to look to other (relevant) international treaties such as the CRPD when interpreting the scope of state obligations under WTO agreements.244 Copyright is also protected at international level through the provisions of the WIPO Copyright Treaty of 1996.245 This treaty has increased the level of protection afforded to authors by creating more rights, ie the right of communicating works to the public,246 and by introducing provisions against the circumvention of technological protection measures.247 This increased protection of copyright at international level has not accommodated the mandatory introduction of any permitted uses, not to mention any specific exceptions for disabled people. Instead, article 10(1) of the treaty allows contracting parties to provide for exceptions to or limitations of the rights granted under the treaty insofar as they meet the requirements of the three-step test. In principle, this may accommodate exceptions to the right of communicating works to the public or to the anti-circumvention provisions for the benefit of the disabled. Article 7 of the Marrakesh VIP Treaty specifically addresses the rights of disabled individuals in light of the circumvention of technological protection measures. It reads: Contracting parties shall take appropriate measures, as necessary, to ensure that when they provide adequate legal protection and effective legal remedies against the circumvention of effective technological measures, this legal protection does not prevent beneficiary persons from enjoying the limitations and exceptions provided for in this Treaty.
6.4 Laws Protecting Intellectual Property Rights Copyright was one of the central issues that delegates had to consider when discussing the scope of article 30. In the proposals on the then draft article 24, the Facilitator had stressed that ‘more investigation is needed to choose between intellectual property
Intellectual Property Review 309–12; Christophe Geiger, ‘Constitutionalising Intellectual Property Law? The Influence of Fundamental Rights on Intellectual Property in the European Union’ (2006) 37 IIC 371–406; Martin Senftleben, ‘Towards a Horizontal Standard for Limiting Intellectual Property Rights? WTO Panel Reports Shed Light on the Three-Step Test in Copyright Law and Related Tests in Patent and Trademark Law’ (2006) 37 IIC 407; Kamiel J Koelman, ‘Fixing the Three-Step Test’ (2006) 28 European Intellectual Property Review 407–12; André Lucas, ‘For a Reasonable Interpretation of the Three Step Test’ (2010) 32 European Intellectual Property Review 277–82; Christophe Geiger et al, ‘Declaration—A Balanced Interpretation of the “Three-Step Test” in Copyright Law’ (2008) 39 IIC 707–13. TRIPS Art 13. See also Ernst-Ulrich Petersmann, ‘Human Rights and International Trade: Defining and Connecting the Two Fields’ in Thomas Cottier et al (eds), Human Rights and International Trade (OUP 2005) 29; Philip Alston, ‘Resisting the Merger and Acquisition of Human Rights by World Trade Law: A Reply to Petersmann’ (2002) 13 EJIL 815–44; Gabrielle Marceau, ‘WTO Dispute Settlement and Human Rights’ (2002) 13 EJIL 753–814. 245 WIPO Copyright Treaty (adopted in Geneva on 20 December 1996). 246 WIPO Copyright Treaty 1996 Art 8. 247 ibid Art 11; see also Patricia Akester, ‘The Impact of Digital Rights Management on Freedom of Expression: The First Empirical Assessment’ (2010) 41 IIC 31. 243 244
bantekas, stephenson chow, karapapa, and polymenopoulou
896
Participation in Cultural Life, Recreation, Leisure, and Sport
rights or copyright, taking into account the best interest of PWDs’.248 It is probably because these interests of persons with disabilities were taken into consideration that a more protectionist approach was adopted through the choice of the broader term ‘intellectual property rights’. As acknowledged in the report by the Chairman during the sixth session, ‘[a]proposal to replace ‘intellectual property rights’ with ‘copyright’ received strong support, but there was no general agreement’.249 It was in the seventh session that the Chairman suggested retaining the ‘reference to “intellectual property rights”, which is broader—the qualifications later in the provision (“do not constitute an unreasonable or discriminatory barrier”) circumscribe its application, as does making it subject to international law’.250 The choice of the term intellectual property rights ensures that appropriate exceptions and limitations for the benefit of disabled individuals shall apply to all areas of intellectual property law, despite the fact that copyright is arguably the most relevant area of intellectual property protection in the context of access to cultural goods. Possibly, another relevant area is the EU database right,251 which prevents the unauthorized extraction and/or re-utilization of substantial parts of a database. Intellectual property can be seen as a barrier between a cultural work and its enjoyment by the disabled in that it confers to the right holder the power to authorise or prohibit the use of the work. These exclusive rights give the right holder the power to either license a use or exclude third parties from that use. They are, however, limited in scope by the so-called exceptions and limitations to intellectual property rights that permit users to carry out some activities without seeking consent from the right holder(s) or clearing a license, including the copying of a book in a format that is accessible to the disabled to the extent allowable under such exceptions and limitations. The legal nature of exceptions and limitations varies from jurisdiction to jurisdiction but most commonly they serve as defences against allegations of infringement. In the United States,
248 Consolidation of proposals submitted by the Facilitator, as of 12 August 2005 Facilitator’s draft Article 24—Participation in cultural life, recreation, leisure, and sport, available at: ; see also the draft proposal of the International Disability Caucus (NGO) during this session that refers to artistic property rights, which is traditionally meant to be confined to copyright, available at: : ‘States Parties shall take all appropriate steps to ensure that laws protecting artistic property rights do not constitute an unreasonable or discriminatory barrier to access by persons with disabilities to cultural materials.’ Note that during the fourth session, the same NGO had a broader proposal encompassing both intellectual and artistic property rights. 249 Report by the Chairman on draft article 24 sixth session 139, available at: . 250 Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, Seventh session, New York, 16–27 January 2006, Letter dated 7 October 2005 from the Chairman to all members of the Committee UN Doc A/AC 265/ 2006/1 (14 October 2005) 105. 251 In Europe, databases are protected by copyright and by the so-called sui generis database right. Copyright subsists in original databases and the sui generis protection exists in recognition of the investment that is made in compiling a database. The sui generis right offers a protection that is comparable to copyright even though it is a distinct form of protection. The sui generis right was introduced in the EU via Directive 96/9/EC of the European Parliament and of the Council of 11 March 1996 on the legal protection of databases, L 77, 27 March 1996, 20–28 (Database Directive). The Directive offers the following definition to the term ‘database’: ‘a collection of independent works, data or other materials arranged in a systematic or methodical way and individually accessible by electronic or other means’—see Art 1(2).
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
897
courts have judicially affirmed that the fair use doctrine is an affirmative defence to a claim of copyright infringement, with the proponent carrying the burden of proofing all issues in dispute.252
6.5 ‘unreasonable or discriminatory barrier to access cultural materials’ As explained earlier, intellectual property can constitute a barrier to access cultural materials by the disabled. State parties should ensure that such a barrier does not become ‘unreasonable or discriminatory’. There was considerable discussion during the CRPD negotiations as to which terms to use in this context. For instance, the Canadian government suggested deleting the term unreasonable in the seventh session. In the end, both terms were used in article 30(3) CRPD. The wording indicates that reasonable barriers are permitted. This could include instances where a cultural object is unavailable or prohibitively costly in a particular language. What is more, it is possible that some cultural materials cannot be produced in a format accessible to disabled people. Article 30 CRPD makes clear, however, that all forms of diversity should be accommodated. Accessible formats include, but are not limited to, Braille, Moon, large print, e-books, and audio books with special navigation, audio description and radio broadcasts. In its comments on then draft article 24 entitled ‘Participation in cultural life, recreation, leisure and sport’, the Working Group indicated that ‘the Ad Hoc Committee may wish to consider whether and how the concept of accessibility could be expanded under this draft Article’.253 Indeed, as already explained, some NGOs, including the International Disability Caucus (IDC) in the seventh session and several Australian NGOs in the third session, suggested that it is preferable to deal with the removal of barriers to information comprehensively in the relevant provision dealing with accessibility. There was no consensus to this end, however, and a separate article on intellectual property was retained under the heading ‘Participation in cultural life, recreation, leisure and sport’.
7. Paragraph 4 7.1 ‘Cultural identity’ 7.1.1 Meaning and Scope ‘Cultural identity’ may be described as the sentiment of belonging to a community that shares common values.254 Its meaning has been the subject of fierce debates, its scope is hard to define and a definition has never been widely accepted. For these reasons, a right to a cultural identity, although ‘extensively discussed’ at least since the early 1980s at
252 American Geophysical Union v Texaco Inc, 60 F 3d 913, 918 (2d Cir 1994); see also Campbell v Acuff-Rose Music Inc, 510 US 569, 590 (1994). 253 Working Group draft text on draft article 24, 108, available at: . 254 Christopher J Johnstone, ‘Disability and Identity: Personal Constructions and Formalized Supports’ (2004) 24 Disability Studies Quarterly 1.
bantekas, stephenson chow, karapapa, and polymenopoulou
898
Participation in Cultural Life, Recreation, Leisure, and Sport
UNESCO level,255 has never been explicitly guaranteed in international human rights instruments. The scope of ‘cultural rights’ has initially orbited around the right ‘to take part in cultural life’, guaranteed in article 15(1)(a) of the International Covenant on Economic, Social and Cultural Rights (ICESCR). The meaning of this ‘cultural life’, however, has evolved over time. In the 1950s, shortly after the UN Specialized Agency on the Protection of Education, Science and Culture (UNESCO) was created, international efforts to protect ‘culture’ have been confined to the protection of education and the preservation of cultural assets. Debates on cultural identity have been scarce, and even when present, focused primarily on race.256 It is only in the late 1990s that the need to protect identities in the sense of ‘being different’ became more visible within the international human rights discourse, encompassing other potential grounds for discrimination. Even until then, however, the protection of the rights of persons with disabilities remained marginal. Illustrative exceptions include General Comment No 5 of the UN Committee on Economic, Social and Cultural Rights (CESCR) on the applicability of the ICESCR to persons with disabilities.257 Noteworthy in this comment is the fact that the CESCR underlined that ‘the right to full participation in cultural and recreational life for persons with disabilities . . . requires that communication barriers be eliminated to the greatest extent possible’258 and that ‘in order to facilitate the equal participation in cultural life of persons with disabilities, Governments should inform and educate the general public about disability’.259 Regional human rights bodies have equally contributed to the empowerment of cultural identities, dotting them—to some extent—with justiciability. The Inter- American Court of Human rights in particular has developed a pioneering jurisprudence in relation to indigenous cultural rights,260 while the 2016 American Declaration on Indigenous rights has been a unique instrument affirming ‘the right of indigenous persons to their own cultural identity and cultural heritage’.261 The European Court of Human Rights (ECtHR) has equally had the opportunity to underline the importance of minority cultural identities for the preservation of cultural diversity—and this, despite the a priori exclusion of cultural rights from its mandate. By way of example, in relation to several joint cases decided in the mid-1990s and related to Roma evictions by the British authorities, although finding against the applicants, the Court underlined the importance of cultural diversity and pluralism within society by stating that
255 See Yvonne Donders, ‘A Right to Cultural Identity in UNESCO’, in Francesco Francioni and Martin Scheinin (eds), Cultural Human Rights (Brill 2008) 317, 331. 256 eg Declaration on Race and Racial Prejudice, Paris, 27 November 1978, Art 1(2): ‘All individuals and groups have the right to be different, to consider themselves as different and to be regarded as such’, reiterated in the UNESCO’s Declaration of Principles of Tolerance (1995). 257 CESCR, ‘General Comment No 5, Persons with Disabilities’ UN Doc E/1995/22 (9 December 1994). 258 259 ibid para 37. ibid para 38. 260 eg see Case of Plan de Sánchez Massacre v Guatemala (2004) Inter-Am Ct HR (Ser C) No 105 para 49; The Mayagna (Sumo) Awas Tingni Community v Nicaragua (2001) Inter-Am Ct HR (Ser C) No 79 para 135; Case of Saramaka People v Suriname (2007) Inter-Am Ct HR (Ser C) No 172 para 121; Comunidad Moiwana v Suriname, 15 June 2016, IACtHR Series C 124 (2005) para 86. 261 American Declaration on the Rights of Indigenous Peoples (ADRIP), AS Res 22888 (XLVI-O/16 in OAS, General Assembly 46th Session, Declarations and Resolutions Adopted by the General Assembly, OR OEA/Ser P/AG/doc 5557/16 (2016) Art 13(1)).
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
899
the preservation of cultural diversity ‘is of value to the whole community’.262 Later on, in relation to the rights of the Polish minority of Upper Silesia, the grand Chamber of the Court hailed cultural diversity and minority consciousness, by stating that ‘pluralism is also built on the genuine recognition of, and respect for, diversity and the dynamics of cultural traditions, ethnic and cultural identities, religious beliefs, artistic, literary and socio-economic ideas and concepts’ and that ‘the harmonious interaction of persons and groups with varied identities is essential for achieving social cohesion’.263 At the same time, UNESCO elaborated a Convention on the Protection of Cultural Diversity (2005), in which ‘cultural identities’ played a central role, especially in connection to the preservation of cultural diversity and an entitlement to receive quality education.264 In 2009, the CESCR Committee issued another comment, this time on article 15 of the ICESCR and the participation in cultural life. This marked a significant step forward for the empowerment of disability culture. Most significantly, it affirmed freedom of choice as the central element in the definition and construction of an individual (or collective) cultural identity. Hence General Comment No 21, not only reiterated to the letter article 30 CRPD;265 it further underscored that participation in cultural life encompasses cultural identity, namely ‘the right of everyone—alone, or in association with others or as a community—to act freely [our underlying], to choose his or her own identity, to identify or not with one or several communities or to change that choice, to take part in the political life of society, to engage in one’s own cultural practices and to express oneself in the language of one’s choice’.266 In this way, inclusion in cultural activities and acceptance of disability as part of one’s way of life acquired international human rights law standing. This said, despite the broad understanding of the term ‘cultural identity’ by these UN bodies, the terms ‘disability culture’ and ‘disability identity’ are both absent from the wording of article 30(4) CRPD. One of the reasons may be that these terms remain controversial, including among the members of the disability community.267 As a result, a ‘conflict’ between the perception of one’s disability and ‘the limitations of a society that categorizes who is normal and who is not’,268 cannot be a priori resolved in favour of the former. This situation would most likely arise in relation to problems in civil registration
262 Chapman v the United Kingdom [GC] (2001) 33 EHRR 399 para 93, joint with Coster (no 24876/94), Beard (no 24882/94), Jane Smith (No 25154/94), and Thomas Lee (no 25289/94); cf the case of D.H. and Others v the Czech Republic [GC](2008) 47 EHRR 59 (concerning compulsory education for Roma in minority schools leading to segregation) and Muñoz Díaz v Spain (2010) 50 EHRR 49 (in relation to the recognition of a marriage in Spain celebrated under the Roma traditions); see generally, Julie Ringelheim, Diversité Culturelle et Droits de l’Homme: La Protection des Minorités par la Convention Européenne des Droits de l’Homme (Bruylant 2006). 263 264 Gorzelik and Ors v Poland [GC] (2005) 40 EHRR 4 para 92. Arts 1 and 5. 265 CESCR, ‘General Comment No 21, ‘Right of everyone to take part in cultural life’ (Art 15(1)(a) ICCPR’ UN Doc E/C.12/GC/21 (21 December 2009) paras 30 and 31. 266 ibid para 15(a). 267 See eg Maya Sabatello, ‘The Politics of the Child’s Right to Identity in a Disability-Free Society’ (2009) 17 International Journal of Children’s Rights 171, 201 and in relation to disability culture generally, Susan Peters, ‘Is there a Disability Culture? A Syncretisation of Three Possible World Views’ (2000) 15 Disability & Society 583; generally, Simi Linton, Claiming Disability Knowledge and Identity (NYU Press 1998). 268 See Arlene Kanter, ‘The Globalization of Disability Rights Law’ (2003) 34 Syracuse Journal of International Law and Commerce 241, 247; also, generally, Linton (n 288) 12; Tom Shakespeare, ‘The Social Model of Disability’, in Lennard Davis et al (eds), The Disability Studies Reader (2nd edn, Routledge 2006) 197.
bantekas, stephenson chow, karapapa, and polymenopoulou
900
Participation in Cultural Life, Recreation, Leisure, and Sport
(and by implication also access to services),269 as well as mitigation, including compensation and social security benefits.270 On the other hand, article 30(4) CRPD does not give rise to an independent entitlement to protect disability identities largo sensu. Cases of denial of legal capacity and guardianship, or non-compliance with compulsory treatment,271 therefore, fall outside its scope—although such situations would be most likely breaching other provisions of the CRPD (such as the right to equal recognition before the law, the right to health guaranteed under article 25 or the right to liberty and security guaranteed under article 14).272 Likewise, the rights of children to preserve their cultural identities are primarily protected via article 3 of the General Principles of the CRPD.273 On the contrary, the reference to cultural identity in article 30(4) encompasses ‘multiple’ dimensions of a disabled individual’s cultural identity. This is one of its significant aspects, given that the relationship between disability and other community and group identities is not directly addressed in any other provision of the CRPD –if only in section (p) of the preamble that recognizes intersectional discrimination.274 Indigenous individuals, in particular, who have historically suffered from brutal treatment, violence, and abuse in the context of colonization,275 are still today disproportionately affected by disability due to poverty, malnutrition, and lack of infrastructure.276 The obligation to provide health
269 The CRPD Committee has been active in highlighting problems related to lack of registration, especially in remote villages and rural areas, see eg ‘Concluding Observations on the Initial Report of the Bolivia’ UN Doc CRPD/C/BOL/CO/1 (4 November 2016) para 47; ‘Concluding Observations on the Initial Report of Paraguay’ UN Doc CRPD/C/PRY/CO/1 (15 May 2013) paras 45–46; ‘Concluding Observations on the Initial Report of Mexico’ UN Doc CRPD/C/MEX/CO/1 (27 October 2014) para 41. 270 By way of illustration, in the US, administrative social security boards may refuse welfare benefits in case of disabilities that may be easily treated ‘with reasonable cost and safety’. Doron Dorfman, ‘Disability Identity in Conflict: Performativity in the U.S. Social Security Benefits System’ (2015) 38 Thomas Jefferson Law Review 47, 63 (discussing the ‘uncertainty’ of the scope of the American Disability Act and the difficulties to ‘fit into the public image of disability’). 271 eg in the UK compulsory treatment orders (CTOs) that involve involuntary hospitalization may be issued under Part 7 of the Mental Health (Care and Treatment) (Scotland) Act 2003 in case of mental disorders; these are defined as ‘any disorder or disability of the mind’ according to Art 1 of the Act, and could be ordered under Art 57 of the Act if this medical treatment ‘would be likely to . . . (i) prevent the mental disorder worsening; or (ii) alleviate any of the symptoms, or effects, of the disorder’. eg also in the UK the application of the Mental Health Act 1983 has led to more than 4,500 compulsory treatment orders in the period 2014–15; see the Shadow report to the CRPD in view of the periodic report of the UK, submitted by Inclusion Scotland, Disability Rights UK and Disability Wales (January 2017). Likewise, in Canada, the treatment of ‘involuntary patients’ is allowed under Art 35 of the Canadian Mental health care and treatment act (2006), with the exception of psycho-surgery (Art 36); see also Tina Minkowitz, ‘The United Nations Convention on the Rights of Persons with Disabilities and the Right to Be Free from Non-consensual Psychiatric Interventions’ (2007) 34 Syracuse Journal of International Law and Commerce 405, 419 (discussing interventions that cause extreme suffering and ‘destruction of chunks of memory and identity’). 272 See also CRPD Committee ‘Concluding Observations on the initial report of Paraguay’ para 35, where the Committee found violations of Art 14 with respect to ‘committal of children, women and men with disabilities to homes or psychiatric hospitals without free and informed consent and for lengthy periods of time’. 273 Art 3 (h) CRPD provides that one the principles of the present Convention shall be ‘respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities’. 274 CRPD Preamble (p). 275 This has amounted to widespread impairments and trauma, see David Hollinsworth, ‘Decolonizing Indigenous disability in Australia’ (2013) 28 Disability & Society 601, 604ff. 276 In Australia, for instance, ‘the prevalence of impairment among Indigenous people is twice that of other Australians’ see ibid 609; UN Inter-Agency Support Group (IASG) on Indigenous Peoples, ‘Rights of indigenous peoples/persons with disabilities’, Thematic paper towards the preparation of the 2014 World
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
901
services (‘living independently and being included in the community’) therefore under article 19 of the CRPD should be read in light of article 30(4), taking into account the need for reasonable accommodation of indigenous peoples. Services therefore should not only be adequate and adaptable but also culturally sensitive and appropriate.277 Furthermore, under article 30 (4), indigenous traditional knowledge and healing practices should be also considered in policy-making decisions. This is currently happening in extremely few cases and usually among groups and tribes that have a saying in policy- making decisions and the public debate. The Māori and Iwi communities of New Zealand for instance have managed to obtain (some) consultation and participation rights in relation to the provision of disability services concerning them, and specifically the funding of rongoā practices [traditional healing through the use of plants] in the context of provision of health and disability services. The Waitangi Tribunal of Inquiry, established under the Treaty of Waitangi, has had the opportunity to discuss succinctly the responsibilities of the Crown in relation to indigenous traditional knowledge and practices in the context of the Fauna and Flora case (Wai 262 claim).278 It will have the chance to reflect upon them much more in detail in the Canterbury Health Claim case, currently pending before the Tribunal.279 This application was brought by the Māori of Canterbury in 2017 with respect to their ‘disproportionate ill-health’,280 and the application of Section 4 of the New Zealand Public Health and Disability Act 2000 that provides for mechanisms in order to ‘enable Māori to contribute to decision-making on, and to participate in the delivery of, health and disability services’.281
7.1.2 States’ Obligations (‘recognition and support’) UN bodies have highlighted positive obligations of states in relation to accessibility, inclusion and empowerment. According to the CESCR, for instance, ‘states parties are under an obligation to facilitate the right of everyone to take part in cultural life by taking a wide range of positive measures . . . such as . . . adopting policies enabling persons belonging to diverse cultural communities to engage freely and without discrimination in their own cultural practices’,282 and ‘inclusive cultural empowerment . . . is a tool for reducing the disparities so that everyone can enjoy, on an equal footing, the values of his or her own culture within a democratic society’.283 The reference to inclusive cultural
Conference on Indigenous Peoples (2014) 1, available at: ; also, First Peoples Disability Network (Australia), ‘Intersectional Dimensions on the Right to Health for Indigenous Peoples—A Disability Perspective’, study prepared for the Expert Mechanism on the Rights of Indigenous Peoples (EMRIP) on ‘The Right to Health for Indigenous Peoples (2016) at 5, available at: . 277 This has been already highlighted by the Special Rapporteur on disability rights in her annual reports adopted by the HRC in 2016 and 2017 respectively—albeit with no reference to Art 30 (4). See ‘Report of the Special Rapporteur on the Rights of Persons with Disabilities’ UN Doc A/71/150 (20 December 2016) paras 53 & 61 and UN Doc A/71/314 (9 August 2016) para 53. 278 Waitangi Tribunal, Ko Aoteroa Tēnei: ‘A Report into Claims Concerning New Zealand Law and Policy Affecting Māori Culture and Identity’ (2011) (Fauna and Flora case, Wai 262) (discussing the fact that the Crown has been supporting and funding rongoā, although this has been ‘been consistently punctuated by delays . . . [while] . . . Māori health problems have festered’). 279 Waitangi Tribunal, The Canterbury Health Claim, Wai 2645 (filed on 17 February 2017). 280 ibid eg according to the claim, the Māori are three times more likely to be hospitalized with chronic respiratory diseases than non-Māori and twice more likely to die from lung cancer. 281 282 283 ibid 2. See CESCR (n 65) para 52(a) and (b). ibid para 69.
bantekas, stephenson chow, karapapa, and polymenopoulou
902
Participation in Cultural Life, Recreation, Leisure, and Sport
empowerment should not go underestimated neither as human rights initiatives have been to date focusing for the most on political and economic empowerment of the poor, and especially women,284 while debates on inclusion in particular have been pivoting around inclusive education (rather than access to the values of one’s culture). The CRPD is a pioneering instrument in this respect: not only does it guarantee access to cultural materials, activities, and performances/services;285 it also spearheads the freedom of persons with disabilities to make their own choices,286 including ‘living independently and being included in the community’.287 Both ‘recognition’ and ‘support’ under article 30(4) CRPD imply positive obligations on states, primarily in the sense of promoting self-empowerment and inclusion of persons with disabilities. This in turn entails the promotion and respect of positive perceptions about disability (such as indigenous worldviews on disability for instance),288 and the rejection of cultural prejudice (noting also the understanding of culture by the CESCR as a dynamic rather than static phenomenon).289 This is especially important in contexts where the social perception of disability makes it ‘invisible’ (as Mutua asserts)290—or even worse, when it is accompanied by significant stigma that leads to isolation and exclusion (in cases where it is considered the upshot of divine punishment, spirit possession, or witchcraft, as it is commonly the case in traditional African and Asian societies).291 Cultural practices that result in abuse, therefore, clearly fall outside the scope of protection of ‘cultural identities’ under article 30(4). By way of example, the abandonment of disabled boys and girls by their own families or forced sterilization of disabled persons have been addressed several times in the Committee’s recommendations—under both article 7 on the rights of children,292 and article 19 on participation.293 Other practices that are culturally rooted, such as the persecution of persons affected by albinism (that has amounted to murder in more than fifty cases over the last three years) due to distorted beliefs throughout East Africa are condemned not only by the CRPD Committee but also by the whole international community.294 284 eg see the UN Women’s ‘Empowerment Principles’ initiative, launched in March 2010, available at: ; UN SG ‘Report: Legal Empowerment of the Poor and Eradication of Poverty’ UN Doc A/64/133 (13 July 2009). The Beijing Declaration and Platform for Action (15 September 1995) also refers to the empowerment of women with disabilities, para 178 (j). 285 Art 30(1) CRPD. 286 287 ibid Preamble; Art 3(a) ‘General Principles of the CRPD’. ibid Art 19. 288 eg Steven Kapp, ‘Navajo and Autism: The Beauty of Harmony’, (2011) 26 Disability & Society 583, 586 (discussing beliefs related to autism among the Navajo). 289 cf also CESCR (n 265) para 11, noting that ‘the expression “cultural life” is an explicit reference to culture as a living process, historical, dynamic and evolving, with a past, a present and a future’. 290 Kagendo Mutua, ‘The ‘Semiotics of Accessibility: Cultural constructions of Disability’ in Linda Rogers and Beth Blue Swadener (eds), Semiotics and Disability: Interrogating Categories of Difference (SUNY 2001) 103–04. 291 eg see Erving Goffmann, ‘Selections of Stigma’, in The Disability Studies Reader (n 289) 131; Hebron Ndlovu, ‘African Beliefs Concerning People with Disabilities: Implications for Theological Education’ (2016) 20 Journal of Disability & Religion 29, 29; Senzokuhle Doreen Setume, ‘Myths and Beliefs About Disabilities: Implications for Educators and Counselors’ (2016) 20 Journal of Disability & Religion 62, 67; also, CESCR (n 265) para 38. 292 eg CRPD Committee, ‘Concluding Observations on the initial report of China’ UN Doc CRPD/C/ CHN/CO/1 (15 October 2012) para 14. 293 eg CRPD Committee, ‘Concluding Observations on the initial report of Gabon’ UN Doc CRPD/C/ GAB/CO/1 (2 October 2015) paras 44–45. 294 The CRPD Committee, rather than considering a case apart, categorizes albinism among the range of serious disabilities affected by extreme stigma. In its concluding observations on Kenya for instance, the
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
903
In a few cases belief systems and religious constructions of disability are also clashing with the very concept of disability culture. Islamic teachings are a good illustration of this. Islam denies persons with disabilities all legal capacity and excludes them from acquisition and social welfare,295 while a number of Islamic Republics, including some of those who have ratified the CRPD (such as Pakistan and Saudi Arabia) still ‘legitimize sexual abuse [towards persons with disabilities] under the guise of the Sharia’.296 Hence, while the Qur’an and the Sunna provide for a general obligation of care towards persons with disabilities,297 as well as for some exceptions from religious obligations aiming at their accommodation,298 they totally lack guidance in relation to empowerment and inclusion, and thus promote a charity- based perception of disability. The reservations placed upon the CRPD by Brunei Darussalam (namely, that it would not consider itself bound by any provisions of the Convention contrary to the Constitution of Brunei Darussalam and to the beliefs and principles of Islam) and the generic declaration made by the Islamic Republic of Iran upon ratification are illustrative of such disparities between human rights and classical Sharia law.299
7.1.3 Interpretation and Practice under the CRPD The consideration of the need to preserve the ‘cultural identity’ of the disabled is to date absent in the CRPD Committee’s concluding observations under article 30(4).300 Nonetheless, while exchanging views with states parties, the Committee has been proactive in highlighting intersectional discrimination against individuals living in indigenous communities. This would typically be considered while discussing compliance with the CRPD’s ‘general principles’ and particularly equality; article 18 on liberty of movement and the right to be registered; article 19 on access to services; article 28
CRPD notes the alarming connection between cultural practices and violence against persons with albinism, ‘in particular girls, including kidnappings, killings and attacks for the purpose of witchcraft practices, and the absence of measures to protect victims and to prosecute and convict perpetrators’; see, CRPD Committee, ‘Concluding Observations on the initial report of Kenya’ UN Doc CRPD/C/KEN/CO/1 (30 September 2015) para 19. Likewise, ‘Concluding Observations on the initial report of Uganda’ UN Doc CRPD/C/UGA/ CO/1 (12 May 2016); ‘Concluding Observations on the initial report of Ethiopia’ UN Doc CRPD/C/ETH/ CO/1 (4 November 2016). cf the jurisprudence of the African Human Rights Commission, eg ACHPR, ‘Resolution 263 on the prevention of attacks and discrimination against persons with albinism’ (22 October–5 November 2013). 295 See eg Sura al Nisa, verse 5: ‘. . . and do not give the weak-minded your property, which Allah has made a means of sustenance for you, but provide for them with it and clothe them and speak to them words of appropriate kindness’; see also, Liaquat Ali Khan, ‘Protection Of Languages And Self-Expressions Under Islamic Law’ (2012) J Trans L & Pol 19, 94–96; Brenton Kinker, ‘An Evaluation of the Prospects for Successful Implementation of the CRPD in the Islamic World’ (2013–2014) 35 Mich JIL 443, 448. 296 Javaid Rehman, ‘Religion, Human Rights Law and the Rights of the Child: Complexities in Applying the Sharia in Modern State Practices’ (2011) 62 Northern Ireland Legal Quarterly 153, 163. 297 Mohammed Morad, Yusuf Nasri, and Joav Merrick, ‘Islam and the Person with Intellectual Disability’ (2001) 5 Journal of Religion, Disability & Health 65, 68. 298 eg from fasting (Sura al Baqara 2, verse 184) or contributing to war (Sura al-’Anqabut 29, verse 91). 299 See UN treaty collection, Declarations and Reservations to the CRPD, available at: . 300 The latter focuses on the ratification of the relevant IP treaties in relation to access to works (chiefly the World Intellectual Property Organization Marrakesh Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired, or Otherwise Print Disabled)—see eg ‘Concluding Observations on the initial report of Azerbaijan’ UN Doc CRPD/C/AZE/CO/1 (12 May 2014) para 46; ‘Concluding Observations on the initial report of Belgium’ UN Doc CRPD/C/BEL/CO/1 (28 October 2014) para 40.
bantekas, stephenson chow, karapapa, and polymenopoulou
904
Participation in Cultural Life, Recreation, Leisure, and Sport
on an adequate standard of living and social protection; and article 29 on effective participation.301 The removal of cultural prejudice on the contrary, has been part of the Committee’s concerns in relation to various other provisions—in particular, article 8 on awareness- raising; article 28 on the right to work; and article 7 on the rights of the child. Hence, most concluding observations that encourage ‘awareness-raising campaigns to reinforce the positive image of persons with disabilities as holders of human rights’ equally encourage ‘a culture of respect for those rights’.302 Such encouragements are followed by recommendations to ‘fully inform persons with disabilities . . . about their human rights, using various formats, media and modes of communication such as Braille and sign language and other accessible formats’.303 In its concluding observations on Ecuador, for instance, the Committee stipulates that ‘the state party [should] include a specific component for the participation of children with disabilities in its incentives supporting organizations of persons with disabilities, in order to preserve their identity and promote their involvement in protecting their own rights’.304 And in its concluding observations on Argentina in 2012, the Committee again notes its concern ‘about the cultural barriers and prejudices that hinder persons with disabilities from entering the labour market, particularly in the private sector, despite the existence of tax incentives for employers’.305
7.2 Sign Languages The CRPD is considered one of the most progressive instruments in relation to the emergence of a sign language policy and the empowerment of Sign Language Peoples (SLPs).306 Sign languages appear in five different provisions. First, they are part of the definition of ‘languages’ in article 2 (allowing them therefore to be considered minority languages). Second, according to the provision on freedom of expression (article 21), states should ‘accept and facilitate’ (under b) and even officially recognize their use (under e). Third, they are a feature of the obligations related to the right to education, imposing positive obligations on states in relation to sign language education.307 Fourth, they are central
301 CRPD Committee, ‘Concluding Observations on the initial report of Guatemala’ UN Doc CRPD/C/ GTM/CO/1 (30 September 2016) paras 13–14; ‘Concluding Observations on the initial report of Ecuador’ UN Doc CRPD/C/ECU/CO/1 (27 October 2014) para 13; ‘Concluding Observations on the initial report of Bolivia’ paras 5–7, 16, and 48; ‘Concluding Observations on the initial report of Mexico’ para 10. 302 ‘Concluding Observations on the initial report of Costa Rica’ UN Doc CRPD/C/CRI/CO/1 (12 May 2014) para 18; ‘Concluding observations on the initial report of Paraguay’ para 22; ‘Concluding Observations on the initial report of Chile’ UN Doc CRPD/C/CHL/CO/1 (15 May 2013) para 22. cf ‘initial report of Sweden’ UN Doc CRPD/C/SWE/CO/1 (12 May 2014) para 22. 303 Eg ‘Concluding Observations on the initial report of Costa Rica’ para 18; ‘Concluding observations on the initial report of Paraguay’ para 22. 304 ‘Concluding Observations on the initial report of Ecuador’ UN Doc CRPD/C/ECU/CO/1 (27 October 2014) para 19; ‘Concluding Observations on the initial report of Sweden’ para 53; ‘Concluding Observations on the initial report of Mexico’ para 57. 305 ‘Concluding Observations on the initial report of Argentina’ UN Doc CRPD/C/ARG/CO/1 (8 October 2012) para 43. 306 Sarah Batterbury, ‘Language Justice for Sign Language Peoples: the UN Convention on the Rights of Persons with Disabilities’ (2012) 11 Lang Policy 253, 254. 307 According to Art 24(3)(b) CRPD: ‘states parties shall enable persons with disabilities to learn life and social development skills . . . and . . . take appropriate measures, including facilitating the learning of sign language and the promotion of the linguistic identity of the deaf community’.
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
905
to the obligations of accessibility and the obligation to provide professional interpretation.308 Fifth, they also appear as a feature of article 30(4) in relation to the protection of cultural and linguistic identities. The CRPD Committee, generally urges states parties to recognize sign languages as national official languages,309 and inversely, commends them if they have already done so.310 And indeed, as a result of advocacy and pressure, more than thirty states have to date officially recognized sign languages as official languages, constitutionally or by means of general legislation. These include most European States; the United States, Canada, Australia, New Zealand; as well as African states (eg South Africa, Kenya, Zimbabwe, and Uganda)311 and some Latin American states (eg Uruguay, Colombia, and Costa Rica). Yet, in the CRPD Committee’s comments and observations, sign languages are evoked more frequently in the context of accessibility, the right to education and freedom of information. In its general comment in relation to accessibility, for example, the CRPD Committee notes that: ‘accessibility is a precondition for persons with disabilities to live independently and participate fully and equally in society’ and that ‘part of the task of encompassing the diversity of persons with disabilities in the provision of accessibility is recognizing that some persons with disabilities need human or animal assistance in order to enjoy full accessibility (such as personal assistance, sign language interpretation, tactile sign language interpretation or guide dogs)’.312 In its concluding observations on Denmark, in relation to article 21, the Committee ‘recommends that the state party recognize the right of all deaf persons and born deaf persons to have the possibility to learn and communicate in Danish sign language, regardless of medical treatments undergone; take effective measures to promote Danish sign language as a communication method, without necessarily resorting to speech therapy; carry out research into Danish sign language, including the development of a Danish sign language dictionary; and promote the use of Danish sign language in all areas of deaf persons’ lives to ensure their participation in particular in employment, education and cultural life’ and furthermore that ‘the Government of the Faroe Islands recognize Faroese sign language as an official language’.313 Likewise, in its concluding observations on Bolivia, the Committee recommends that the state party ‘expedite the recognition of Bolivian sign language as an official language, promote the accreditation of qualified Bolivian sign language interpreters throughout the state party, and increase the availability of sign language interpreters in public services in order to promote the integration of the culture and linguistic identity of deaf persons, in collaboration with organizations of persons with disabilities’.314 To date, there is no separate consideration of sign languages by the Committee under article 30(4). Such consideration could shed light on the meaning and scope of ‘linguistic identity’ and its preservation—especially in relation to deaf children, who are ‘frequently deprived of early exposure to a fully accessible language and as a consequence, See Art 9(d) CRPD. eg ‘Concluding Observations on the initial report of the Republic of Korea’ UN Doc CRPD/C/KOR/ CO/1 (29 October 2014) para 41. 310 eg ‘Concluding Observations on the initial report of Costa Rica’ para 3. 311 Analytically, Maartje De Meulder, ‘The Legal Recognition of Sign Languages’ (2015) Sign Language Studies 498, 500ff. 312 CRPD Committee, ‘General Comment No 2 (2014) on Article 9: Accessibility’ UN Doc CRPD/C/GC/ 2 (22 May 2014) paras 28–29. 313 ‘Concluding Observations on Denmark’ UN Doc CRPD/C/DNK/CO/1 (30 October 2014) para 45. 314 ‘Concluding Observations on Bolivia’ para 52. 308 309
bantekas, stephenson chow, karapapa, and polymenopoulou
906
Participation in Cultural Life, Recreation, Leisure, and Sport
may develop incomplete knowledge of any language’.315 Hence, although the obligation to ‘respect the right of children with disabilities to preserve their identities’ figures among the general principles of the Convention (article 3), and despite the fact that article 9 emphasises that ‘states parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights on an equal basis’,316 the right of children born deaf to be exposed to sign languages from an early age in the context of the family317 is not expressly guaranteed by the CRPD. The Committee on the Rights of the Child, however, has highlighted in its General Comment No 9 that ‘children with disabilities should . . . be provided with the appropriate technology and other services and/or languages, eg Braille and sign language, which would enable them to have access to all forms of media’.318 It remains therefore controversial whether the option to be sign language literate is an obligation for all children—or merely an option for parents, if they so wish.319
7.3 Deaf Culture Deaf culture (with a capital ‘D’) is a term that highlights the sentiment of belonging to a community of persons who identify as such. Fluency in sign languages, however, although the primary identification element, does not seem to be a necessary prerequisite in its definition. In fact, ‘patterns of identification’ with Deaf culture vary substantially,320 with several authors arguing that the vagueness in the definition of deafhood is one of its strengths.321 For instance, persons with minor hearing impairments and even hearing may also be included in the Deaf community and identify with Deaf culture—in the case of hearing children ‘who grew up surrounded by deaf culture and see that culture as their home’ for instance.322 Other elements may include recognition of distinctiveness, lifestyle, as well as self-identification as being non-disabled.323 As noted by Leigh et al, ‘Deaf culture is that component of the Deaf community that represents a view of life manifested by the use of [American] sign language and ways of life pertinent to those embedded within Deaf culture.’324
315 See Kristin Snoddon and Jennifer Paul, ‘Deaf Children’s Right to Sign Language’ (2017) 6 Canadian Journal of Disability Studies 2. 316 Art 7(1) CRPD. 317 On the benefits of such exposure in terms of skills development, see Tom Humphries et al, ‘Language Acquisition for Deaf Children: Reducing the Harms of Zero Tolerance to the Use of Alternative Approaches’ (2012) 9 Harm Reduction Journal 16, 16. 318 CRC Committee, ‘General Comment No. 9 (2006) ‘The rights of children with disabilities’ UN Doc CRC/C/GC/9 (27 February 2007) para 37. 319 On ‘optional’ sign language literacy, see Snoddon and Paul (n 315) 4. 320 Irene Leigh, Alan Marcus, Patricia Dobosh, Thomas Allen Gallaudet, ‘Deaf/Hearing Cultural Identity Paradigms: Modification of the Deaf Identity Development Scale’ (1998) 3 Journal of Deaf Studies and Deaf Education 329, 330; see also, Ila Parasnis, Cultural and Language Diversity and the Deaf Experience (CUP 2012); Michael Harvey, A Breath of Fresh Air Inside Deaf Culture (CUP 2005). 321 eg see Annelies Kusters and Maartje De Meulder, ‘Understanding Deafhood: in search of its meanings’ (2013) 158 American Annals of the Deaf 428, 428. 322 ibid 330. 323 Batterbury (n 306) 254 (arguing that ‘language policy requires a shift in policy discourse away from a disability construction to one recognizing the minority language status of SLPs’ in order to achieve language justice for SLPs); Peters (n 267) 583; and generally, Edward Dolnick, ‘Deafness as Culture’ (1993) 272 The Atlantic Monthly 12. 324 Leigh et al (n 320) 330.
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
907
7.4 Linguistic Identity 7.4.1 Meaning and Scope Linguistic identity is one of the most important features of cultural belonging. It is also one of the rights that are particularly important for children as it allows to ‘ensure both the child’s right to develop his or her own cultural identity, even if differentiated from the parents’.325 The linguistic identities of the disabled however, have not been an express part of the minority protection regime under international human rights mechanisms. The human rights system has primarily been protecting national minorities, typically focusing on access to education and information in one’s mother tongue, as well the formation of minority associations and schools. Key human rights provisions and instruments such as article 27 of the International Covenant on Civil and Political Rights and the CoE Framework Convention respectively were originally conceived to grant individual protection to national minorities,326 while the rights of disabled persons have been a priori excluded from the UN Declaration on the Rights of Persons Belonging to National or Ethnic, Religious and Linguistic Minorities.327 Few notable exceptions include the CRC that stipulates that children of linguistic minorities and indigenous children ‘should not be denied’ the right to use their own languages (article 30) and that the media should pay ‘particular regard’ to their linguistic needs (article 17); the UN Declaration on the Rights of Indigenous Peoples that provides that states have the obligation to ‘ensure continuing improvement of their economic and social conditions’, paying particular attention to ‘the rights and special needs of indigenous elders, women, youth, children and persons with disabilities’ (article 21 (2)); and the more recently drafted American Declaration on Indigenous rights (2016) which provides for more specific state obligations, including the creation of indigenous radio and television programmes.328 Such instruments however, are not adequate to impose teaching sign languages at schools and familiarizing children and adults with Deaf culture. As Batterbury highlights, lack of teaching ‘has a negative impact on the long-term future of minority spoken languages and is also damaging to the bilingual status of children who are hearing-SLPs’.329
7.4.2 States Obligations (‘recognition and support’) The CRPD addresses specifically the ‘linguistic identity of deaf persons’ already in relation to the right to education (article 24). The two provisions, however, entail different types of obligations. According to article 24, education should be inclusive and states are mandated to ‘facilitate and promote the linguistic identity’ of deaf persons on an equal basis, whereas article 30(4) provides an individual entitlement to ‘recognition and support’. This is a general
Tom Humphries et al, ‘The Right to Language’ (2013) 41 Journal of Law, Medicine & Ethics 872, 881. Art 27 ICCPR asserts that: ‘in those states in which ethnic, religious or linguistic minorities exist, persons belonging to such minorities shall not be denied the right, in community with the other members of their group, to enjoy their own culture, to profess and practice their own religion, or to use their own language’; see also Art 5 CoE Framework Convention for the Protection of National Minorities states. 327 See Art 1(1) of the Declaration. 328 See Art 14(3) of the American Declaration, which provides that states shall take measures to promote the broadcast of radio and television programs in indigenous languages, particularly in areas with an indigenous presence’ and that ‘the states shall support and facilitate the creation of indigenous radio and television stations, as well as other means of information and communication’. 329 Sara Batterbury (n 306) 260–61. 325 326
bantekas, stephenson chow, karapapa, and polymenopoulou
908
Participation in Cultural Life, Recreation, Leisure, and Sport
entitlement that reinforces the deaf persons’ societal role in the elimination of barriers in all areas of public life—rather than in education only. It is, in addition, read conjointly with the entitlement to a ‘cultural identity’ (‘specific cultural and linguistic identity’). This, in turn, is expressly followed by references to sign language and Deaf culture. This linkage in article 30(4), therefore, presumably resonates the claim of the deaf community to its distinctive culture, as well as the (essentialist) claim of some members of this community to preserve their hearing impairment despite the possibility of mitigation by medical treatment.330 The presumption is supported by the travaux préparatoires on article 30(4). During the debates of the third session of the UN Ad Hoc Committee, it was questioned whether the phrase ‘specific cultural and linguistic identity’ was appropriately placed under article 30,331 while some states (Israel, Costa Rica, Uganda) even insisted that this provision explicitly mentions only the cultural identities of those who are either deaf or deaf-blind.332 In addition, suggestions to include in the CRPD (obviously broader) rights related to one’s cultural identity such as the ‘development of self-identity’; the development of talents; or cultural abilities were all rejected.333
7.4.3 Interpretation and CRPD-Related Practice The CRPD Committee has been a unique UN body to persistently invoke the need to translate official documents into accessible formats and into indigenous native languages—especially while considering article 21 on freedom of expression and access to information and article 11 on situations of risk and humanitarian emergencies.334 Yet, contrary to the issue of recognition of sign languages and freedom of expression of the disabled, the recognition of ‘linguistic identities’ of persons with disabilities has not yet been raised by the Committee’s concluding observations under article 30. A more thorough consideration of ‘linguistic identities’ under article 30 could flag state obligations in relation to facilitated communication in the public sphere, especially on the Internet and the media, as well as to give guidance to other UN bodies in relation to minority and indigenous languages, and languages spoken by migrants, asylum seekers, and refugees. The preservation of the linguistic identity of disabled persons is equally scarce in the jurisprudence of human rights bodies. In a few cases, the ECtHR has considered issues related to discrimination on grounds of linguistic disabilities—for instance, in a 1995 case of an Algerian national under the threat of deportation who was only able to communicate with his immediate family circle (the Court in this case described the applicant Sabatello (n 267) 201. Travaux préparatoires at fn 112; on the background of the travaux, see Michael Ashley Stein, and Janet E Lord, ‘Monitoring the Convention on the Rights of Persons with Disabilities: Innovations, Lost Opportunities, and Future Potential’ (2010) 32 HRQ 689, 691–92. 332 ibid 3: [Persons [who are deaf—Israel] (and the deafblind—Uganda) (with disabilities of all kinds— Israel) shall be entitled, on an equal basis with others, to recognition and support of—Costa Rica] (states parties recognize that deaf persons living under their jurisdiction are entitled to—Costa Rica) their (own—Costa Rica) specific cultural and linguistic identity—EU, Japan] (and shall take all appropriate measures to support this right—Costa Rica). 333 ibid, ‘The development of (self identity, talent, creativity—Costa Rica) the [child’s—Russian Federation] personality, talents and mental and physical (cultural and spiritual—Bahrain) abilities (of persons with disabilities—Russian Federation) to their [fullest—EU] (full—EU) potential) Art 17 on education. 334 Given that the Committee refers to the need to translate early warning mechanisms in case of disasters prevention; see Concluding observations on the initial report of Mexico paras 12 and 21–2; Concluding observations on the initial report of Kenya paras 22 and 55 (adding ‘refugee languages’); Concluding observations on the initial report of Uganda para 21. 330 331
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
909
as an ‘illiterate deaf and dumb’;335 in a 2012 case where a prisoner who had no proficiency in sign languages was again described as ‘deaf and dumb’;336 and a 2009 case concerning the disruption of a religious ceremony attended by deaf Jehovah’s Witnesses.337 And in a limited number of cases, the Court has dealt with ‘clashes’ between an individual and a collective linguistic identity: for instance, in a case of refusal of registration of a three- letter forename by the Finnish authorities, because allegedly ‘the naming practice followed in a state was closely linked to the cultural and linguistic history and identity of that state’.338 Yet, there are much fewer concerning specifically the recognition and support of linguistic identities of deaf persons. A case on parental arrangements decided in 2017 could be considered a missed opportunity for the Court to pronounce itself on the matter. The applicant, Mr Kapcer, who suffered from a hearing impairment and had a hearing implant, contested before the ECtHR his contact arrangements in respect of his son (who also suffered from a hearing impairment) in the context of his parental authority after his divorce.339 He complained that the Polish authorities, by ruling that ‘the communication barrier constituted an objective obstacle to relations between [him] and his son’ discriminated against him on grounds of his disability. The Court decided the case unanimously, and found a violation of article 8 of the Convention by reference to article 23 CPRD and child-rearing responsibilities, and agreed with the applicant that ‘as a deaf-mute father [sic], he could understand better than anybody else what kind of obstacles his disabled son could encounter in his life’.340 Concurring Judge Motoc, however, went further in her separate opinion, clearly finding discrimination and underscoring that ‘the right to preserve identities, and acceptance of deaf people and sign languages as part of human diversity and humanity imply that the recognition of sign language is inseparable from the recognition and acceptance of deaf people’s cultural and linguistic identity’.341
8. Paragraph 5 8.1 Chapeau 8.1.1 ‘enabling participation in sport, leisure and recreation’ The keen reader will recall that during the negotiations leading to article 30, the EU emphasized that there is no such thing as a right to sport.342 In equal measure, developed states generally deny the existence of a right to development under which states are obliged to offer to all (whether in their territory or third states) a decent standard of living, despite obligations assumed under the MDGs or the SDGs. Hence, unlike other provisions in the CRPD, paragraph 5 of article 30 does not create rights to recreation, leisure and sport, but merely an obligation on states parties to ‘take appropriate measures’ to enable disabled persons to ‘participate’ in such activities. The two key obligations on Nasri v France, App No 19465/92 (1995) A 320-B. Z H v Hungary, App No 28973/11 (8 November 2012). 337 Kuznetsov and ors v Russia (2009) 49 EHRR 15. 338 Johansson v Finland (2007) 47 EHRR 369 para 24. 339 340 Kacper Nowakowski v Poland, App No 32407/13 (10 January 2017). ibid paras 6, 63. 341 ibid Concurring opinion of Judge Motoc para 9. 342 See Ad Hoc Committee, ‘Daily Summary of Discussions at the Sixth Session (10 August 2005), available at: . 335 336
bantekas, stephenson chow, karapapa, and polymenopoulou
910
Participation in Cultural Life, Recreation, Leisure, and Sport
states parties are, therefore, accessibility and availability to these activities.343 The reader should consult the commentaries in this volume on articles 4 and 9 CRPD, which discuss parties’ general obligations, as well as the range of options encompassed within the notion of accessibility.344 Accessibility to sporting and recreational venues is typically associated with the adaptation of existing facilities,345 but the obligation encompassed in article 30(5) is much broader in nature as will be demonstrated below. Some disability-related laws express a similar restrictive view of ‘the right to sport and recreation’ and thus reject a rights-based approach to recreation, leisure and sport. The US Americans with Disabilities Act (ADA) refers to several ‘major life activities’ for disabled people, which are subject to disability rights protection. US courts have generally shown reluctance to see sport and recreation as major life activities.346 Although there is a clear correlation between the right to the highest attainable standard of healthcare347 (as enshrined in article 25 CRPD and article 12 ICESCR) and physical exercise, play and recreation, a rights-based connection between the two has not been made in the CRPD or the ICESCR.348 Even so, given that some degree of physical exercise is an essential ingredient of a healthy life,349 it is absurd that a right to physical exercise (even if not a full-fledged right to sport) should not be encompassed within article 25 CRPD.
8.1.2 ‘leisure and recreation’ These concepts may seem self-evident but in fact their lay definition is not necessarily the same as their legal counterpart.350 Article 24 UDHR notes that ‘everyone has the right to rest and leisure, including reasonable limitation of working hours and periodic holidays
343 This is in stark contrast with Art 1(1) of the UNESCO Charter of Physical Education, Physical Activity and Sport, which states that: ‘Every human being has a fundamental right to physical education, physical activity and sport without discrimination on the basis of ethnicity, gender, sexual orientation, language, religion, political or other opinion, national or social origin, property or any other basis.’ 344 See generally, CRPD Committee, ‘General Comment No 2 (accessibility)’ UN Doc CRPC/C/GC/2 (22 May 2014); unfortunately, GC 2 is not very enlightening as concerns the accessibility-related obligations contained in Art 30(5) CRPD and simply mentions this provision without any commentary. 345 CRPD Committee, ‘Concluding Observations on the initial report of Ecuador’ paras 46–47. 346 See Kiphart v Saturn Corp, 74 F Supp 2d 769, 774 (MD Tenn 1999); Buskirk v Apollo Metals, 116 F Supp 2d 591, 598 (ED Pa 2000); see also Janet E Lord, Michael Ashley Stein, ‘Social Rights and the Relational Value of the Rights to Participate in Sport, Recreation and Play’ (2009) 27 Boston U Int’l LJ 249, 252. 347 The EU Parliament has long emphasized that sport is a crucial factor ‘for improving the quality of life, self-esteem, independence and social integration of people with disabilities’. EU Parliament, ‘Situation of Disabled People in the Enlarged European Union: The European Action Plan (2006–07)’. This was not iterated in the EU Commission’s ‘Progress Report on the implementation of the European Disability Strategy (2010–2020)’, Doc SWD(2017) 29 final (2 February 2017). 348 See CESCR, ‘General Comment No 14: The Right to the Highest Attainable Standard of Health’ UN Doc E/C12/2000/4 (11 August 2000), where the words ‘sport’ ‘recreation’ or ‘physical exercise’ are not even mentioned in passing. 349 See eg Jacqueline Center, Helen Beange, Aidan McElduf, ‘People with Mental Retardation have an Increased Prevalence of Osteoporosis: A Population Study’ (1998) 103 American Journal of Mental Retardation 19; Catherine P Coyle, Mayra Santiago, ‘Aerobic Exercise Training and Depressive Symptomatology in Adults with Physical Disability’ (1995) 76 Archives of Physical Medicine and Rehabilitation 647; Sandra L Gibbons, Frank B Bushakra, ‘Effects of Special Olympics Participation on the Perceived Competence and Social Acceptance of Mentally Retarded Children’ (1989) 6 Adapted Physical Activity Quarterly 40. 350 See David L Richards, Benjamin Carbonetti, ‘Worth What We Decide: A Defense of the Right to Leisure’ (2013) 17 International Journal of Human Rights 329; Cara Aitchison, ‘From Leisure and Disability to Disability Leisure: Developing Data, Definitions and Discourses’ (2003) 18 Disability and Society 955; Jerome Singleton, Simon Darcy, ‘Cultural Rights, Disability, Inclusion and Citizenship: Moving Beyond Leisure in Isolation’ (2013) 16 Annals of Leisure Research 183.
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
911
with pay’. It should be emphasized that article 24 UDHR follows the provision on the right to work and consequently rest and leisure are associated with the right to work, despite the use of the word ‘everyone’. ‘Everyone’ in the context of the UDHR does not refer to all persons, but to those in employment. As a result, the rights in article 24 UDHR are only available to employed persons and not also to those out of employment.351 This result is further confirmed in article 7(d) ICESCR, where in the context of the right to work, parties are obliged to ensure: ‘Rest, leisure and reasonable limitation of working hours and periodic holidays with pay, as well as remuneration for public holidays’. Leisure studies experts argue that the right to leisure in the UDHR comprises three distinct sub-rights, namely the right to rest (article 24), the right to cultural participation (article 27(1)) and the right to travel (article 13). The right to leisure articulated in articles 27(1) and 13 UDHR applies to everyone irrespective of being in employment or not.352 The chapeau of paragraph 5 of article 30 CRPD is not restricted to after-work-related leisure and recreation as it is not associated with the right of disabled persons to work.353 Such rest and leisure is implicit in article 27(1)(b) CRPD, where it speaks of ‘just and favourable conditions of work’. Article 30 is a stand-alone provision that is linked chiefly, but not exclusively, to accessibility and enabling environments (article 9 CRPD). Moreover, there is nothing in the travaux to suggest that the participants in the Ad Hoc Committee meetings stipulated a construction of ‘leisure’ and ‘recreation’ similar to that in the UDHR or the ICESCR. It is safe to argue that under article 30(5) CRPD all disabled persons, whether employed or not, enjoy access to leisure and recreation in equal manner as persons without disabilities. The purposes of ‘leisure’ and ‘recreation’ go beyond mere time off work. The 2000 Charter for Leisure, adopted by the World Leisure Organization, a global NGO with consultative status at ECOSOC, states that: ‘Individuals can use leisure opportunities for self- fulfilment, developing personal relationships, improving social integration, developing communities and cultural identity as well as promoting international understanding and co-operation and enhancing quality of life’.354 The promotion of leisure-related activities works both ways, as it provides sustainable employment and enhances development.355 Although a definition of ‘leisure’ and ‘recreation’ may turn out to be pedantic, article 1 of the 2008 Quebec Declaration adopted by the World Leisure Organization during the tenth World Leisure Conference, emphasizes that the right to leisure is characterized by: • a free personal or group quest for satisfaction, pleasure, discovery and socialization in a leisurely fashion; • experiences of well-being and harmony with oneself, others and nature; • healthy lifestyles directly related to the physical and social well- being of individuals and communities • the effects of cultural, social and economic development on society; • accessibility by the greatest number of people.
351 Matthias Risse, ‘A Right to Work? A Right to Leisure? Labor Rights as Human Right’ (2009) 3 Law & Ethics of Human Rights 1. 352 Anthony J Veale, ‘Human Rights, Leisure and Leisure Studies’ (2015) 57 World Leisure Journal 249. 353 The same is also true in Art 13(c) CEDAW. 354 See Anne Hubbard, ‘The Major Life Activity of Belonging’ (2004) 39 Wake Forest L Rev 217, 267, who argues that sport, recreation, and play are essential for the ‘major life activity of belonging’. 355 UNESCO, Hangzhou Declaration (2013) ‘Placing Culture at the Heart of Sustainable Development Policies’.
bantekas, stephenson chow, karapapa, and polymenopoulou
912
Participation in Cultural Life, Recreation, Leisure, and Sport
This is a broad enough compilation of elements that links fundamental socio-economic as well as civil and political rights to ‘wellbeing’356 as the key principle underlying the right to development.357 It is clear that disabled persons cannot enjoy access to leisure and recreation in the sense described without positive actions on the part of states. In fulfilling this obligation, which in turn nurtures both body and spirit, states must take action not only in spheres within the public domain (eg schools, cultural and natural sites) but also buildings and sites controlled and operated by private entities, such as sporting stadiums. The obligations of private parties are analyzed further in the context of paragraph 5(e) of article 30.
8.1.3 ‘sporting activities’ Just like the concepts of ‘recreation’ and ‘leisure’ the CRPD Committee has not offered any clues or guidance as to their scope or meaning. The chapeau of article 30(5) CRPD evinces no intention, whether in the text itself or on the basis of the travaux, to treat ‘sport’ any different from ‘leisure’ and ‘recreation’. In this sense, sport is a form of leisure but also leads to better educational, developmental, and health outcomes358 and UNGA has specifically acknowledged its wellbeing potential for disabled persons.359 It is not a right as such in the CRPD, but the responsibility of the state is engaged to ensure that persons with disabilities have access to sporting activities equally with non-disabled persons. This obligation was articulated in rule 11 of the Standard Rules, as well as in its forerunners, as already explained in the Background section in the beginning of this chapter. Other inter-governmental efforts have equally taken place with regard to sport-related accessibility. In 1966, the Council of Europe adopted a policy entitled ‘Sport for All’, in which it declared that ‘every individual shall have the right to participate in sport’. This culminated into two important recommendations, namely: Recommendation R (86) 18 on the ‘European Charter on Sport for All: Disabled Persons’ and Recommendation R (92) 6 on a ‘Coherent Policy for People with Disabilities’. The latter was effectively a blue print for accessibility in public and private spaces, including significant elements of universal design. The former is the Council of Europe’s Charter for Sports. In 1978, UNESCO adopted an International Charter of Physical Education and Sport (as revised in 2015), which stated that every person has the right to physical education, physical activity, and sport, including disabled persons (article 1(1)). The right to promote participation and access to sporting-related activities is further expressly provided in several multilateral treaties, applicable to all persons (article 13(c) CEDAW), including also specifically to disabled persons, as is the case with article 15(3) of the revised European Social Charter. It is perhaps important to set out the parameters of the term ‘sport’ because this may become the subject of contention. Here are some examples why a boundary is necessary.
356 See Rodney Peffer, ‘A Defense of Rights to Well-Being’ (1978) 8 Philosophy & Public Affairs 65, who while supportive argued, almost forty years ago, that its laughable to suggest such a right to persons living in poverty. 357 The first UNDP Human Development Report distinguished between two sides of human development: ‘the formation of human capabilities, such as improved health or knowledge . . . and the use that people make of their capabilities, for work or leisure’ UNDP, Human Development Report (OUP 1990) 10. 358 UN Human Rights Council Res 26/L 29 (23 June 2014) para 3. 359 UNGA Res 67/17 (28 November 2012), ‘The right of everyone to the enjoyment of the highest attainable standard of physical and mental health: sport and healthy lifestyles as contributing factors’ para 4.
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
913
Is consensual duelling and boxing a sport?360 Is spectatorship a sporting activity? Are chess, backgammon, and race car driving sports? Answers to these questions are crucial, because if the above activities constitute sporting and recreational activities, states parties must provide access to these ‘sporting activities’. The European Sports Charter,361 adopted by the Council of Europe, defines ‘sport’ in article 2(1)(a) as: all forms of physical activity which, through casual or organised participation, aim at expressing or improving physical fitness and mental well-being, forming social relationships or obtaining results in competition at all levels.
Clearly, sport is viewed in the Charter not only as a form of physical activity, but also as a social and cultural activity.362 It includes both professional and amateur sports, whether at club level or individual/spontaneous. As regards the chapeau of article 30(5) CRPD, given the existence of ‘recreation’ and ‘leisure’ alongside ‘sporting’ activities, one must assume that ‘sport’ does not encompass non-physical, yet recreational, activities related to sporting events, such as spectatorship,363 participation in fan clubs, sponsorship, or other similar peripheral activities. In any event, these are covered by the terms ‘recreation’ and ‘leisure’ and spectatorship is generally encompassed under paragraph 5(c) of article 30.
8.2 Paragraph 5(a) Paragraph 5(a) at first glance seems like a mere continuation (as articulated in the chapeau) of the right of access and participation in sporting activities. However, it goes well beyond the chapeau in requiring states to encourage and promote participation in ‘mainstream sporting activities at all levels’. This latter phrase requires some qualification and distinction from the mere right of access to sport. Non-disabled persons participate in sports and where they can advance to more competitive levels they are usually provided with the means and opportunities to achieve some degree of professional status. This competitive level of sportsmanship is made available either through public funding (typically for sports that do not attract significant private sponsorship or fee-paying spectators) or private clubs and other private sponsors. The equality proviso in the chapeau is very much relevant in this respect, because states parties are obliged to elevate disabled sporting activities to similar competitive levels, both nationally and internationally. If public funding is available for a particular non-disabled sporting activity, similar funding should be made available for its disabled counterpart.364 The obligation articulated in paragraph 5(a) entails that states parties must support elite disabled athletes to compete in international competitions if they are doing so in respect of non-disabled athletes.365
360 In the common law, boxing is a genuine exception to the rule that consent is ineffective in the case of deliberately inflicted injuries. It attracts a special privilege in that even acts intended to cause serious injury can be consented to; see Barnes [2004] EWCA Crim 3246. 361 Recommendation R (92) 13 Rev (16 May 2001) Annex, European Sports Charter. 362 See Nigel Thomas, Disability, Sport and Society: An Introduction (Routledge 2009). 363 See CRPD Committee, ‘Concluding Observations on the initial report of the UK’ paras 62–63, which requested the UK to adopt a concrete action plan to address the ‘low level of accessibility to sports stadiums with individual seating for persons with disabilities and their families, friends and personal assistants’. 364 CRPD Committee, ‘Concluding Observations on the initial report of Moldova’ UN Doc CRPD/C/ MDA/CO/1 (18 May 2017) paras 54–55. 365 CRPD Committee, ‘Concluding Observations on the initial report of Bolivia’ para 67(a).
bantekas, stephenson chow, karapapa, and polymenopoulou
914
Participation in Cultural Life, Recreation, Leisure, and Sport
Resource constraint is clearly an unjustifiable claim where funding is available for non- disabled athletes. In equal measure, states parties commit themselves to take all possible measures to ensure disabled persons have access to structures (eg standing or ad hoc tournaments) that allow them to compete at all levels.366 This may be achieved by the setting up of dedicated disabled sport federations, the training of appropriate coaching staff, access to adapted physical activity, and others. Top flight disabled sporting participation will certainly require a significant degree of awareness raising in order to raise the profile of disabled sports. Besides advertising, this may also be achieved through subsidized tickets at venues, tax exemptions for disabled sporting federations, dedication of airtime on private and public media outlets to publicize disabled sports, and others. Overall, the nature of the state obligation expressed through the words ‘encourage’ and ‘promote’ is discouraging and is a direct result of the absence of a right to sport and recreation under international human rights hard law instruments.
8.2.1 ‘mainstreaming’ Reference to mainstream sporting activities does not mean that disabled persons should compete in sporting events alongside their non-disabled counterparts. If that were so, then amateur athletes would be entitled to compete in competitions alongside professional athletes. Rather, the term ‘mainstream’ refers to participation in sports and events that are available to non-disabled athletes, subject to appropriate adaptation, as will be explained in the next section, although the exclusion of a disabled athlete with performances similar to non-disabled top-flight athletes from non-disabled events would amount to discrimination. No doubt, disabled persons’ organizations have, and do, establish activities that are not mainstream, as is the case with several sports set up in connection with the Special Olympics. In practice, disabled participation in competitive sports is meaningful only if persons with similar types and degrees of disability compete against each other. To this end, the IPC has authored an ‘Athlete Classification Code’, as revised in 2015. What is yet unclear is whether a disabled person with prosthetics can and/or should be declassified as an athlete entitled to partake in disabled events and thus become eligible to compete with disabled competitors. The appellate division of the Court of Arbitration for Sport (CAS) overturned an award at first instance, which ruled that a prosthetic limb gave a disabled athlete an (artificial) competitive advantage over other athletes. The appellate division argued that ‘if the device provided more disadvantages than advantages it could not reasonably be said to provide an advantage over other athletes, because the user was actually at a competitive disadvantage’. On the balance of probabilities, ‘there was not sufficient evidence of any metabolic advantage in favour of a double amputee using the prosthetic’.367 The tribunal concluded, however, by saying that since Pistorius was the only runner, disabled or otherwise, to run as fast with the prosthetics in question, the ruling does not grant a blanket licence to other single or double amputees to compete in IAAF- sanctioned events using Cheetah Flex-Foot prosthetics, or indeed any other type of prosthesis. Each
366 See principle 5.2 of the IPC Accessibility Guide, entitled ‘Conditions for Integration in Mainstream Sport Activities’. 367 Oscar Pistorius v International Association of Athletics Federations (IAAF ) paras 47–50, CAS 2008/A/1480 (2008) 3 Aust & NZ Sports LJ 145.
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
915
amputee athlete must collaborate with the IAAF to have his or her eligibility under Rule 144.2(e), as interpreted by this Panel, established on an individual basis.368
The award seems to suggest that disabled athletes are not automatically entitled to participate in competitions for non-disabled athletes without permission from the governing body of the sporting association in question, irrespective the disabled athlete competes at a level equal or even higher to non-disabled athletes. This conclusion is wrong, as non- permission is not something that is open to the discretion of sporting associations because as has already been emphasized, the enforcement of equality and non-discrimination burdens also non-state entities. Although similar cases will be rare, there may well exist sports where certain impairments do not inhibit a disabled athlete to compete against his or her non-disabled counterparts at the highest level of the game. The admission of Pistorius (and a few others before him) to non-disabled international sporting events clearly suggests, as a general rule, that a disabled person may participate in non-disabled sporting events, including the Olympics, as long as they are not making use of enhancement devices that give a distinct competitive advantage over other competitors. Although the Pistorius case does not strictly fall within the remit of reasonable accommodation, PGA Tour Inc v Martin369 does. Martin, a professional golfer, suffered from a circulatory condition that impaired his ability to walk independently. The PGA required that all competitors walk the entire length of the golf course as part of the competition, which Martin could not do. The US Supreme Court held that the ADA applied to the PGA (the organizer of professional golf tours in the USA), arguing by a majority of 7:2 that the PGA was a commercial enterprise and that it was obliged to offer reasonable accommodation not only to the spectator area of its courses, but also its actual playing fields.370 It noted that walking the course was not a key aspect of the game. The IPC Accessibility Guide mentions several ‘conditions for integration in mainstream sport activities, namely: accessible venues, adapted sport equipment, adapted sport rules, educated professionals, and competition opportunities.371
8.3 Paragraph 5(b) 8.3.1 ‘organise, develop and participate’ Paragraph 5(b) sets out the right of disabled persons to organize and develop disability- specific sporting and recreational activities. If this obligation is to be construed in a meaningful way it entails that the organization and development of such activities must be undertaken by disabled people themselves or by their respective organizations. This means that national disabled sporting associations be set up and operated by disabled persons, with or in conjunction with state entities (eg ministry of sport), with the express consent of disabled persons’ organizations and their participation therein. In practice,
ibid para 55. PGA Tour Inc v Martin, 532 US 661, 204 F 3d 994 affirmed. 370 See Maureen A Weston, ‘The Intersection of Sports and Disability: Analyzing Reasonable Accommodations for Athletes with Disabilities’ (2005) 50 St Louis University LJ 137; Donald H Stone, ‘The Same of Pleasant Diversion: Can We Level the Playing Field for the Disabled Athlete and Maintain the National Pastime in the Aftermath of PGA Tour Inc v Martin: An Empirical Study of the Disabled Athlete’ (2005) 79 St John’s L Rev 377. 371 IPC Accessibility Guide (n 366) principle 5.2. 368 369
bantekas, stephenson chow, karapapa, and polymenopoulou
916
Participation in Cultural Life, Recreation, Leisure, and Sport
national disabled sporting associations involve a combination of stated-based and private entities.372 Besides domestic disabled-persons federations and sporting leagues, three major organizations have been set up at international level to advance competitive disabled athleticism. These are: a) the International Paralympic Committee (IPC), which was formed by national paralympics committees and several disability-specific international sports federations. It supervises and coordinates, among others, the Paralympic Summer and Winter Games;373 b) the Special Olympics and; c) the International Committee of Sports for the Deaf, which organizes the Deaflympics. Unlike the International Olympic Committee (IOC), which is an intergovernmental organization, the three aforementioned disabled organizations are private in nature, despite the involvement of public entities, such as national sport federations. The competitions operated by all three encompass several degrees of competitive sportsmanship and many disabled athletes are effectively professionals. However, they also supervise competitions whose aim is to foster a sport, as well as an inclusive culture for disabled persons, as well as serve as a catalyst for social change.374 The IPC Accessibility Guide has articulated key principles of access in sport. Although these are addressed to host states, they constitute an excellent blueprint for disabled and spectator access to competitive disabled-related sporting activities.375
8.3.2 ‘appropriate instruction, training and resources’ The key word here is ‘encourage’, which is discouraging. Although this may be meaningful as part of an inclusive physical education for disabled children, which is framed as a positive obligation for states under article 24 CRPD, this is not the case for disabled adults’ participation in sporting activities. Given the absence of a right to sport, states are under no general obligation to provide instruction, training and resources to disabled persons, unless they are already doing so in respect of non-disabled persons. In recent years, a new branch of physical education focusing on disabled sports has emerged.376 This means that offering conventional instruction to disabled athletes is clearly inappropriate. At the same time, states should assimilate this branch of physical education into mainstream university curricula so that the next generations of trainers possess the right skills to train disabled athletes.377
8.4 Paragraph 5(c) Unlike subparagraphs (a) and (b), which concentrate on access to participation and inclusion in sporting, recreational, and leisure activities, subparagraph (c) refers to accessibility in respect of venues. It also introduces, for the first time, the word ‘tourism’, which shall be explored later. Accessibility to a venue does not concern the person engaging in
372 See eg Disability Sports Australia, available at: ; see also Laura Misener, Simon Darcy, ‘Managing Disability Sport: From Athletes with Disabilities to Inclusive Organisational Perspectives’ (2014) 17 Sport Management Review 1. 373 See Ian Brittain, The Paralympic Games Explained (2nd edn, Routledge 2016); Keith Gilbert and Otto Schantz, The Paralympic Games: Empowerment or Sideshow? (Meyer & Meyer 2009). 374 See generally Karen P Depauw, Susan J Gavron, Disability and Sport (2nd edn, Human Kinetics 2005), which traces the history, evolution, and current state of disability sports. 375 IPC Accessibility Guide, principle 5.1. 376 See eg Geoffery Z Kohe and Derek M Peters, High Performance Disability Sport Coaching (Routledge 2016). 377 See also Jeffrey J Martin, Handbook of Disability Sport and Exercise Psychology (OUP 2017).
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
917
the activity in question, but others, namely spectators, tourists, etc. This subparagraph is very much implicit in the general concept of accessibility and universal design, but the drafters perhaps felt that particular reference was required to encompass all disabled persons engaged, or interested in attending sporting and recreational activities. The CRPD Committee recommended in the case of the UK that it address the ‘low level of accessibility to sports stadiums with individual seating for persons with disabilities and their families, friends and personal assistants’.378
8.4.1 Accessible Tourism One of the key players in the global tourism trade is the World Tourism Organization (WTO), an inter-governmental organization that is a specialized agency of the UN. It has paved the way for what is now widely known as accessible tourism.379 The UN defines tourist activity as the economic activity aimed at satisfying the needs of those who move from their usual places of residence. More specifically, tourism relates to those journeys made in our spare time, usually aiming to rest, to learn about other cultures, other ways of life, or just to have fun.380 It is now generally accepted that there is a very fine line between the terms ‘recreation’ and tourism,381 so perhaps there is no pressing reason to distinguish them in the context of the CRPD. The language in paragraph 5(c) is partially derived from rules 11 and 1 of the Standard Rules (1993). The notion of tourist accessibility is, however, much broader than simply the subtotal of tourist sites. It encompasses all those phases that a disabled person must traverse in order to reach his or her ultimate destination, including the surrounding environs. Put simply, a wheelchair user in country A cannot reach a site in country B without disability-friendly air transport from A to B; disability-friendly land, sea, or rail transport in B; disability-friendly accommodation and catering in B and; physical accessibility to tourist sites in B. And this is just the bare minimum. This is in line with Target 11.2 of the SDGs, which requires that states should: By 2030, provide access to safe, affordable, accessible and sustainable transport systems for all, improving road safety, notably by expanding public transport, with special attention to the needs of those in vulnerable situations, women, children, persons with disabilities and older persons.
The indicator for Target 11.2 measures its success by reference to the ‘proportion of the population that has convenient access to public transport, by sex, age and persons with disabilities’. Although tourist-related disabled access is but one aspect of Target 11.2, it is instructive of what states are required to achieve. Of equal relevance is also Target 11.7, which requires that states should: By 2030, provide universal access to safe, inclusive and accessible, green and public spaces, in particular for women and children, older persons and persons with disabilities. See (n 363). Simon Darcy, Tracey Dickson, ‘A Whole-of-Life Approach to Tourism: The Case for Accessible Tourism Experiences, (2009) 16 Journal of Hospitality and Tourism Management 32; see also Dimitrios Buhalis, Simon Darcy, and Ivor Ambrose (eds), Best Practice in Accessible Tourism (Channel View Publications 2012). 380 It is defined by the UN Department on Economic and Social Affairs: as an activity of visitors, with the concept of ‘visitor’ being that of a traveller ‘taking a trip to a main destination outside his/her usual environment, for less than a year, for any main purpose (business, leisure or other personal purpose) other than to be employed by a resident entity in the country or place visited’; see International Recommendations for Tourist Statistics UN Doc ST/ESA/STAT/SER M/83/Rev 1 (2008) paras 1.1 and 1.2. 381 See EU Parliament, ‘Tourism and the European Union: Recent Trends and Policy Developments’ (EU 2015) 4. 378 379
bantekas, stephenson chow, karapapa, and polymenopoulou
918
Participation in Cultural Life, Recreation, Leisure, and Sport
The CRPD Committee has urged states to make use of these targets and indicators in the context of article 30(5) in order to render accessible to disabled persons UNESCO World Heritage sites.382 The drive to set up a global policy platform for accessible tourism began in 1991 with the WTO’s resolution ‘For an Accessible Tourism for the Disabled in the 90s’.383 This was followed in 2005 by resolution 492 (XVI)/10, on the recommendation of the WTO’s Committee of Quality and Trade Support, which culminated in a report ‘Towards an Accessible Tourism for All’. This set out the requirements expected of the tourist industry to accommodate and allow equal opportunities for people with limited capabilities. Following the adoption of the CRPD in 2006, the WTO’s instruments were accordingly re-adjusted. In 2009, its General Assembly adopted the ‘Declaration on the Facilitation of Tourist Travel.384 Its aim was to facilitate tourism travel for persons with disabilities as an essential element of any policy for the development of responsible tourism. This was to be achieved by mainstreaming disability issues as an integral part of relevant strategies of sustainable development which ensure that tourism policies and practices are inclusive of people with disabilities, giving rise to equitable and accessible tourism for all.385 In 2013, the WTO adopted its ‘Recommendations on Accessible Tourism’ which focused on seven areas of the tourist chain, namely: a) tourism destination management; b) tourism information and advertising (preparation, information and booking); c) urban and architectural environments; d) modes of transport and stations; e) accommodation, food service, and conventions; f ) cultural activities (museums, theatres, cinemas, and other) and; g) other tourism activities and events. At the EU level, although the EU did not enjoy competence in tourism-related matters until the Lisbon Treaty, in the mid-1990s, it adopted an action plan called ‘Accessible Tourism for All’, which led to the production of a Manual for the tourist industry, entitled ‘For an Accessible Europe for Tourists with Disabilities’ with the aim of providing tourist operators sufficient information to offer safe and accessible services to disabled persons. The EU Commission now maintains a program on sustainable tourism, through which it chiefly commissions studies and reports related to accessible tourism (which, in addition to persons with disabilities, encompasses the elderly and families).386 Given the prevalence of civil society and its concern with disability issues, as well as a vibrant tourist industry, it is not surprising that accessible tourism in the EU has largely been driven by commercial interests and entrepreneurship. A study commissioned by the EU Commission, entitled ‘Mapping and Performance Check of the Supply of Accessible Tourism Services’, was published in 2015.387 The report showed that Europe is the largest tourist destination globally. It identified 313,286 accessible tourism suppliers in EU member states. The study estimated that 9.2 per cent of the existing supply of tourism
CRPD Committee, ‘Concluding Observations on the initial report of Lithuania’ paras 59–60. WTO 284 (IX) (1991), which defined disability and set out plans of action in respect of information and tourist advertising, staff training and the requirements expected of tourist facilities so that they are accessible to people with reduced mobility. 384 WTO Res A/RES/578 (XVIII) (2009). 385 Several initiatives have taken place at the regional level. Of the many in existence, it is worth mentioning the UNESCAP Bali Declaration on Sustainable Tourism Development (2007), available at: . 386 Available at: . 387 Final Report, Doc 220/PP/ENT/PPA/12/6491 (2015). 382 383
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
919
facilities and services have at least some level of provision for travellers with specific access needs. This number is based on the mapping exercise conducted through the study compared to the overall supply of tourism enterprises. The study found over three million tourism businesses which were not prepared to adequately cater to the accessibility market. The study further found that only 17 per cent of all industry respondents that have some provisions for accessible tourism reported that they could cater to all disabilities.388 The study identified, inter alia, the appropriate balance between covering accessibility costs with an awareness of the benefits and revenues to individual providers and the community/city in which tourist services are offered. In the short term, this requires working with national and local destination management organizations to gather and disseminate ‘hard data’ on return on investment. A business case template based on a set of local case studies from across the supply chain should be drawn up to demonstrate the financial and commercial advantages of investing in the accessible tourism market. This information should feed into ‘awareness-raising’ about the accessible tourism market potential at all levels and across all sectors of the tourism industry.389 The business case for tourist accessibility is a significant tool in the hands of states parties to minimize accessibility costs, on the one hand, while investing in their infrastructure and increasing their revenues through increased tourist influxes on the other. The business case is further enhanced by the existence of online published databases of facts and measurements related to the accessibility of tourist venues and services (chiefly in regions and countries of Europe), such as the Accessibility Information Schemes (AIS) and the European Accessible Tourism Directory (PANTOU).390 The CRPD Committee should co-ordinate with IASG for capacity building funding so as to assist countries set up tourist accessibility action plans and long-term agendas.391
8.5 Paragraph 5(d) The inclusion of a sub-paragraph on children in article 30(5) is at the very least highly unfortunate. The drafters gave little consideration to the fact that this paragraph overall rejects the notion of a right to sport and simply urges states to accommodate disabled participation in sports, as well as provide a sufficient degree of accessibility. This is in contrast to article 7 CRPD, which reiterates as its guiding postulate the child’s best interests principle. The best interests principle in paragraph 2 of article 7 is broader than its counterpart in article 23(2) CRPD. The latter relates to family relationships and legal capacity whereas the former refers to ‘all actions concerning children’.392
ibid 4–8. ibid 13–14. 390 Available at: . 391 Such actions will negate the need for litigation, such as Botta v Italy, (1998) 26 EHRR 241, where a disabled applicant complained to the ECtHR that he could not access a private beach resort, although Italian law mandated such access. The applicant’s claim under Art 8 (right to privacy and family life) and Art 14 ECHR (non-discrimination) failed, arguing that the right to access the beach at a location some distance from the applicant’s normal place of residence did not fall within Arts 8 and 14 ECHR. 392 In Glass v UK [2004] ECHR 103, the ECtHR held that the decision to impose treatment on a severely disabled child in defiance of his mother’s objections had given rise to an interference with his right to respect for his private life, and in particular his right to physical integrity. This interference, however, was in accordance with the law and the action taken by the hospital staff had pursued a legitimate aim. 388 389
bantekas, stephenson chow, karapapa, and polymenopoulou
920
Participation in Cultural Life, Recreation, Leisure, and Sport
Although the travaux do not enlighten us as to the precise meaning of this articulation, if article 7(2) is to distinguish itself from article 23(2) CRPD, then the best interests principle in article 7 must necessarily encompass all policies and actions adopted at state and sub-state level and not just court judgments in the narrow family law sense.393 Under this light, the best interests of disabled children as an identifiable group394 may require such policies and resources that are required to satisfy not only the rights under article 7 and the CRPD as a whole, but also other rights not necessarily found in the CRPD. The implementation of disabled children’s best interests requires policy action (eg adoption of legislation, specialized courts) as well as the provision of resources. Hence, the best interests principle should be viewed as having both a personalized and a general dimension, especially in the case of disabled children. It is surely in the disabled child’s best interests to engage in sports and play from early childhood.395 Without inclusive participation in physical and recreational activity, disabled children are subjected to further social exclusion and their health is also further impaired. This is in contrast to non-disabled children in at least one way. Whereas non-participation in sport, physical exercise, and recreation may lead to social exclusion for non-disabled children, they possess the opportunity to engage in some physical exercise, even if unintended (eg walking to school). This is not the case for the majority of disabled children. The best interests principle, therefore, as enshrined in article 7 CRPD and article 3 CRC entails that the right to sport and recreational activities be conferred upon them, even if it is not so conferred upon disabled adults under article 30(5) CRPD. Paragraph 5(d) is also in stark contrast to article 24(1) CRPD, which sets out a right to education of disabled children. As a result of this right, article 24(1)(b) CRPD demands that states ensure: The development by persons with disabilities of their personality, talents and creativity, as well as their mental and physical abilities, to their fullest potential;
A disabled child’s mental and physical abilities cannot be attained without some kind of physical or sporting exercise, or indeed without recreation. This is inherent in any reading of article 24(1)(b) and it is imperative that states and the CRPD Committee incorporate it into future concluding observations, as has already been done by the CRC
393 The same phrase is used in Art 3(1) CRC; the CRC Ctee has construed it to encompass ‘all acts, conduct, proposals, services, procedures and other measures’, CRC Ctee, General Comment No 14 (2013) on the rights of the child to have his or her best interests taken as a primary consideration UN Doc CRC/C/GC/14 (29 May 2013) para 17. 394 See CRC Ctee General Comment 14 para 23, which identifies the best interests principle as both an individual and a group right. 395 See Jane Brodin, ‘Play in Children with Severe Multiple Disabilities: Play with Toys: A Review’ (1999) 46 International Journal of Disability, Development and Education 25; Jean W Gowen, Barbara Davis- Goldman et al, ‘Object Play and Exploration in Children with and Without Developmental Disabilities: A Longitudinal Study’ (1992) 97 American Journal on Mental Retardation 21; Linda L Hestenes, Deborah E Carroll, ‘The Play of Young Children With and Without Disabilities: Individual and Environmental Influences’ (2002) 15 Early Childhood Research Quarterly 229; Ellen M Hamm, ‘Playfulness and the Environmental Support of Play in Children With and Without Developmental Disabilities’ (2006) 26 Occupation, Participation and Health 88.
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
921
Committee.396 Paragraph 2 of article 24 CRPD goes even further and states that in realizing the right to education, states parties shall ensure: (b) Persons with disabilities can access an inclusive, quality and free primary education and secondary education on an equal basis with others in the communities in which they live; (c) Reasonable accommodation of the individual’s requirements is provided; (d) Persons with disabilities receive the support required, within the general education system, to facilitate their effective education; (e) Effective individualized support measures are provided in environments that maximize academic and social development, consistent with the goal of full inclusion.
Quite clearly, an inclusive education for disabled children requires not simply access to sporting activities, but quintessentially a right to sport as an integral aspect of the right to an inclusive education. Paragraph 2(b)–(d) of article 24 CRPD merely elaborates on the modalities of the reasonable accommodation required to give effect to this right; it does not substitute the right to sport with reasonable accommodation. The last phrase in paragraph 5(d) of article 30 is an ode to poor draftsmanship. It considers that by adding the phrase: ‘including those activities in the school system’ it succeeds in covering every school-related playful, recreational or sporting activity. However, the opposite result is achieved, given that the issue is already implicitly addressed by article 24, as explained above. The explicit reference in article 30(5)(d) as to the non-rights based character of play, recreation, and sport might otherwise serve as a lex specialis rule that supersedes the lex generalis statement in article 24. Fortunately, this is not the case. For one thing, the disabled child’s best interests under article 7(2) CRPD, article 3 CRC and customary international law dictates that the positive contribution of sport and recreation to a disabled child’s life renders these concrete entitlements. Secondly, the conflict between articles 24 and 30(5)(d) cannot possibly be resolved on the basis of the lex specialis principle, nor is the sequence of the articles a determining factor. Given the conferral of an entitlement in article 24 (right to education), in conjunction with the customary nature of the child’s best interests principle and the fact that in the travaux there is intention to deny a right to sport and recreation only to disabled adults, disabled children enjoy a right to sport, recreation and leisure irrespective of the language of article 30(5)(d).
8.6 Paragraph 5(e) Paragraph 5(e) is addressed to states parties, albeit the ultimate addressees are non-state actors.397 It has to be read in accordance with developments in a particular field of international law known as business and human rights. Although a significant part of recreational, sporting, leisure and tourist activities are offered by state providers, the bulk is undoubtedly privately operated. Although in other sub-paragraphs of article 30(5) we have discussed the benefits of making a business case for accessible tourism, all four of 396 CRC Ctee, ‘General Comment 9, The Rights of the Children with Disabilities’ UN Doc CRC/C/ GC/9 (27 February 2006) paras 20, 39, 51; CRC Ctee, General Comment 14, The Right of the Child to Have His or Her Best Interests Taken as a Primary Consideration (Art 3 para 1) UN Doc CRC/C/GC/14 (29 May 2013) para 19; CRC Ctee, ‘General Comment 15, The Right of the Child to the Enjoyment of the Highest Attainable Standard of Health (Art 24)’ UN Doc CRC/C/GC/15 (17 April 2013) para 63; CRC Ctee, ‘General Comment 17, The Right of the Child to Rest, Leisure, Play, Recreational Activities, Cultural Life and the Arts (Art 31)’ UN Doc CRC/C/GC/17 (17 April 2013) paras 17, 35, 44, 50, 58. 397 eg Arts 2(e) of CEDAW and 2(1)(d) ICERD require states to take all appropriate measures to eliminate discrimination by both public and private entities, thus implicitly encompassing corporations.
bantekas, stephenson chow, karapapa, and polymenopoulou
922
Participation in Cultural Life, Recreation, Leisure, and Sport
these activities are operated on a larger scale by small and medium enterprises (SMEs). As a result, while it may make commercial sense for a municipality to invest in accessible tourism in the long run, an SME, such as a small restaurant, or a small hotel, may see little point in accessibility-related expenditures.398 A joint effort is therefore important where the state, which sees the larger picture,399 improves accessibility in public spaces and transport, among others, thereby urging and assisting small businesses to develop individual accessibility plans, while at the same time organizing courses to train hospitality industry personnel. Hence, the obligation in paragraph 5(e) encompasses the adoption of laws, policies and actions ensuring that the entire supply chain of the aforementioned four activities is disability-friendly. The lack of synergy between the state and the business sector, as well as the lack of the latter’s understanding of the needs of the disabled tourist population is highly informative. The EU-commissioned report on accessible tourism notes that: There is an important disconnect between the perceptions of industry and travellers. Indeed, the most frequent barriers encountered by tourists related to lack of information on accessible services and the lack of integration of accessible services across the supply chain at destination level. On the other hand, industry perceptions suggest that accommodation and information are the most accessible segments in the supply chain.400
That the obligation is addressed to states does not mean that private entities are immune from human rights obligations. Equality entails that disabled persons have access to private sporting venues and facilities401 and this is true of theatres, recreational and other facilities. States must impose article 30(5)(e) in such a way as to take appropriate measures to ensure that owners comply accordingly. That states have a responsibility to regulate multinational corporations (MNCs) and other private parties in the discharge of their human rights duties has been highlighted many times by treaty bodies.402 The UN Human Rights Committee emphasized in General Comment 31 that ‘the positive obligations on states parties to ensure Covenant rights will only be fully discharged if individuals are protected by the state, not just against violations of Covenant rights by its agents, but also by acts committed by private persons or entities’.403 Private actors are not exempt from the range of socio-economic obligations incumbent on states. Although non-state actors are not charged with specific obligations under 398 See the ‘Mapping and Performance Check of the Supply of Accessible Tourism Services’ Final Report (EU 2015) 9–10, available at: , which identifies three key barriers preventing EU businesses from becoming increasingly accessible: infrastructure and physical barriers, financial barriers including the lack of a strong business case and knowledge and information barriers. 399 The market size for accessible tourism in 2014 in Europe amounted to over 740 million trips per year (day trips and overnight trips combined) based on analyses of the travel propensity of disabled and elderly persons in the EU Member States, ibid 17. 400 401 ibid 13. See Art 4(4) European Sports Charter. 402 CESCR, ‘General Comment 18 (right to work)’ UN Doc E/C 12/GC/18 (6 February 2006) para 35; CESCR, ‘General Comment 15 (right to water)’ UN Doc E/C.12/2002/11 (20 January 2003) para 23; CRC Ctee, ‘General Comment 5 (persons with disabilities)’ UN Doc E/1995/22 (1995) para 42; CEDAW Ctee, ‘General Recommendation 25’ (2004) paras 7, 29, 31–32; CEDAW Ctee, ‘General Recommendation 24’ UN Doc A/54/38/Rev 1 (1999) paras 14–17; HRCtee, ‘General Comment 28’ UN Doc CCPR/C/21/Rev 1/Add 10 (29 March 2000) para 31. 403 HRCtee, ‘General Comment 31’ UN Doc CCPR/C/21/Rev 1/Add 13 (26 May 2004) para 8; in Arenz et al v Germany, (HRCtee) UN Doc CCPR/C/80/D/1138/2002 (2004) para 8.5 and Cabal & Pasini Bertran v Australia, (HRCtee) UN Doc CCPR/C/78/D/1020/2001 (2003) para 7.2, where the HRCtee discussed the admissibility of individual communications relating to abuse by private parties.
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 30
923
the ICESCR, the CRPD or general international law, to the extent that they effectively discharge economic and social rights in substitution for the state they have been viewed by most courts as legitimate duty-holders and have thus accepted the justiciability of claims brought against them. International bodies dealing with socio-economic rights claims but with no jurisdiction against non-state actors, such as the European Committee of Social Rights, will typically find that the state concerned has violated its obligations under the European Social Charter by failing to take action against recalcitrant private actors.404 In equal measure, disability discrimination suits are routinely brought against private entities by disabled persons under disability or equality-related statutes. In most cases these suits argue against the lack of reasonable accommodation or accessibility.405 Besides non-discrimination, private entities have a duty of care towards disabled persons within the sphere of the services offered. This may entail a duty to offer reasonable accommodation, enhanced accessibility. Indeed, the duty itself may derive from statute or treaty. In Stott v Thomas Cook,406 a disabled passenger was returning home with his wife, having requested adjacent seating arrangements, as he was unable to cater for himself. This never happened and the claimant was also dropped by untrained staff while being carried to the aircraft and suffered humiliation. Although his claim for compensation failed on technical grounds, the UK Supreme Court held that the operator had failed to provide reasonable accommodation and had effectively discriminated against him, in breach of Regulation (EC) No 1107/2006 of the European Parliament and the Council concerning the rights of disabled persons and persons with reduced mobility when travelling by air. Overall, the disability experience in air transportation for disabled persons is significantly below dignified standards.407 This includes not only poor seating arrangements, but issues such as lack of appropriate in-flight entertainment for people with sensory impairments.
404 The CESCR in its General Comment 19 (right to social security) UN Doc E/C12/GC/19 (4 February 2008) para 65 noted that a state violates its duty to provide social security where it fails to adequately regulate the activities of private companies that deny this entitlement to rights-holders; see also Ilias Bantekas, Lutz Oette, International Human Rights Law and Practice (2nd edn, CUP 2016) ch 18. 405 See FirstGroup Plc v Pauley (2017) UKSC 4, in respect of reasonable adjustments on a privately-operated bus route. 406 Stott v Thomas Cook Tour Operators Ltd (2014) UKSC 15. 407 See Matthew Kwai-Sang Yau, Bob McKercher, and Tanya Packer, ‘Traveling with a Disability: More than an Access Issue’ (2004) 31 Ann Tour Res 946; Michael A Schwartz, Propelling Aviation to New Heights: Accessibility to In-flight Entertainment for Deaf and Hard Hearing Passengers’ (2012) 77 J Air L & Com 151. Several airline policies require persons with disabilities to travel with an accompanying person without providing them an opportunity to explain heir case; this has been found to be discriminatory—see The Tribunal Grande Instance Bobigny and Paris Court of Appeal decided in Gianmartini et al v Easyjet, finding that Easyjet’s policy on accompanying persons discriminated against PWDs and fined Easyjet 70,000 Euros; on 15 December 2015, the Criminal Chamber of the Court of Cassation affirmed the ruling, see Cass Crim (15 December 2015) Bull Crim 2015 No 286.
bantekas, stephenson chow, karapapa, and polymenopoulou
Article 31 Statistics and Data Collection . States Parties undertake to collect appro1 priate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention. The process of collecting and maintaining this information shall: a) Comply with legally established safeguards, including legislation on data protection, to ensure confidentiality and respect for the privacy of persons with disabilities; b) Comply with internationally accepted norms to protect human rights and fundamental freedoms and ethical principles in the collection and use of statistics.
. The information collected in accordance 2 with this article shall be disaggregated, as appropriate, and used to help assess the implementation of States Parties’ obligations under the present Convention and to identify and address the barriers faced by persons with disabilities in exercising their rights. . States Parties shall assume responsibility 3 for the dissemination of these statistics and ensure their accessibility to persons with disabilities and others.
Mads Pedersen 1. Introduction 2. Background and Travaux Préparatoires 3. Paragraph 1 3.1 ‘Undertake to collect’ 3.2 ‘Appropriate information’ 3.3 ‘Give effect’ to the CRPD Federico Ferretti 4. Paragraph 1(a) 4.1 Legally Established Safeguards 4.2 Data Protection Mads Pedersen 5. Paragraph 1(b): ‘internationally accepted norms’ 6. Paragraph 2 6.1 ‘disaggregated’ 6.2 ‘assess the implementation’ 7. Paragraph 3 7.1 ‘Dissemination’ and ‘Accessibility’ 7.2 Indicators as a Tool to Implement and Monitor the CRPD
pedersen and ferretti
925 925 929 929 931 933 935 936 938 944 944 944 948 949 949 949
Article 31
925
1. Introduction Throughout the last couple of decades, the availability of reliable and comparable data on the lives of people with disabilities has been both fragmentary and inconsistent.1 Before the 1960s, social research did not take account of women, disabled persons, or ethnic minority groups; at best, such studies tended to focus on the individual and any impairment as a problem, rather than focus on the social context and the environment in question.2 Prior to the CRPD, persons with disabilities were a neglected minority3 and an invisible element of international human rights law.4 The CRPD and article 31 have changed all this. The CRPD not only affirmed the human rights of persons with disabilities but also required massive improvements in statistics and research data to ensure that these rights were fulfilled and maintained.5 Here, we explore how a provision on statistics and research data found its way into a human rights treaty for the first time in the history of international human rights law. We consider the nature and position of the provision in a human rights context and we explore the provision’s link with article 32 CRPD on international cooperation and article 33 CRPD on national implementation and monitoring. We will also explore how the provision has been used by the UN Committee on the Rights of Persons with Disabilities (CRPD Committee) in its reporting cycles. Moreover, we will take a look at the current deficits in statistics and research data on disability and describe the initiatives taken to set out more robust statistical and research data on disability issues suitable for international comparison. Finally, we shall highlight some of the initiatives taken and describe best practices on using data as a tool to assess how human rights are lived and experienced by persons with disabilities, with a view to considering how statistics and research data can be used to monitor the implementation of the CRPD.
2. Background and Travaux Préparatoires A provision on data collection in the text of a human rights treaty is inevitably a source of discussion. And so it was at the negotiation sessions leading to the adoption of the CRPD. The idea of an obligation to collect data was nevertheless not foreign to the Ad Hoc Committee responsible for negotiating the draft treaty. Data collection has been recommended in rule 13 of the Standard Rules on the Equalization of Opportunities for 1 See eg ‘Report of the Secretary-General on the Implementation of the World Programme of Action concerning Disabled Persons: The Millennium Development Goals and Synergies with other United Nations Disability Instruments’ UN Doc A/62/157 (27 July 2007) para 17, available at: . 2 Rannveig Traustadóttir, ‘Disability Studies: The Social Model and Legal Developments’ in Oddny M Arnardóttir, Gerard Quinn (eds), The UN Convention on the Rights of Persons with Disabilities—European and Scandinavian Perspectives (Martinus Nijhoff 2009) 1, 6. 3 Holger Kallehauge, ‘The Genesis of a New Human Rights Convention—A Convention on the Rights of Persons with Disabilities’, in Klaus Slavensky et al, Implementing Human Rights: Essays in Honour of Morten Kjærum (Danish Institute for Human Rights 2007) 337. 4 Rosemary Kayess and Phillip French, ‘Out of Darkness into Light? Introducing the Convention on the Rights of Persons with Disabilities’ (2008) 8 HRLR 12. 5 Nora E Groce, ‘Disability, Poverty, Human Rights and the Need for Accurate Data to Promote Action’ (2009) 3 Alter, European Journal of Disability Research 185.
pedersen and ferretti
926
Statistics and Data Collection
Persons with Disabilities, which specifies that ‘states assume the ultimate responsibility for the collection and dissemination of information on the living conditions of persons with disabilities and promote comprehensive research on all aspects, including obstacles that affect the lives of persons with disabilities’.6 In General Assembly resolution 58/132 the importance of improving data and statistics covering persons with disabilities was equally stressed.7 Likewise, requests for further and more comprehensive data collection schemes have been reiterated in connection with other UN conventions.8 At the first session of the Ad Hoc Committee, which took place from 29 July to 9 August 2002, Mexico, the European Union, and China had provided the Committee with three different draft texts of the convention. None of the draft texts included obligations—or the like—on data collection.9 At the second session of the Ad Hoc Committee, which took place between 16 to 27 June 2003, the challenges in connection to the development of disability statistics and the collection of data related to disability was raised for the first time in a report by the UN Secretary-General.10 The Secretary-General stated, among others, the following: 20 years after adoption of the World Programme of Action, it still is not possible to state with precision what percentage of the population is disabled. The reason is that there remains observed variation in the disability data collected by the United Nations, which is the result of different definitions, concepts and methods used in countries. Analysts cannot draw comparisons about the nature and extent of disability within or between countries or make social and economic comparisons between disabled and non-disabled populations.11
In a second report by the UN Secretary-General the subject of data collection was also mentioned in the context of measuring and monitoring the situation of persons with disabilities,12 and in a third report the progress in data and statistics on disability was thoroughly described.13 The report makes references to the work of the United Nations Statistics Division, and among others refers to the Division’s Guidelines and Principles for the Development of Disability Statistics.14 The Guidelines provide practical guidance and principles on the collection of disability data through both surveys and censuses, and
6 See UNGA Res 48/69 (20 December 1993) Annex, ‘Standard Rules on the Equalization of Opportunities for Persons with Disabilities’. 7 See ‘Implementation of the World Programme of Action concerning Disabled Persons: Towards a Society for All in the Twenty-First Century’ UNGA Res 58/132 (22 December 2003) para 8. 8 See eg CERD, ‘General Recommendation no. 24 (Information on the demographic composition of the population)’; CEDAW, ‘General Recommendation no 9 (Statistical data concerning the situation of women)’; CRC Ctee, ‘General Comment No 5 (General measures of implementation of the Convention on the Rights of the Child’ (all contained in UN Doc HRI/GEN/1/Rev 9 (27 May 2008); CEDAW/CRC, ‘Joint General Recommendation/General Comment No 31 of the Committee on the Elimination of Discrimination against Women and No 18 of the CRC Ctee, UN Doc CEDAW/C/GC/31-CRC/C/GC/18 (14 November 2014). 9 See Ad Hoc Committee, Working Group to draft a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, ‘Documents of the first session: working and position papers submitted by Mexico, the European Union and China’ UN Doc A/ AC 265/WP 1) (29 July–9 August 2002). 10 ibid ‘Documents of the second session: Report of the Secretary- General on issues and emerging trends related to the advancement of persons with disabilities’, UN Doc A/AC 265/2003/1 (16–27 June 2003) paras 18–22. 11 12 ibid para 19. ibid paras 21–24. 13 ibid ‘Report of the Secretary-General on progress in the equalization of opportunities by, for and with persons with disabilities’, UN Doc A/AC265/2002/3 (16-27 June 2003) paras 26–33. 14 Available at: (accessed 24 February 2017).
pedersen and ferretti
Article 31
927
on the compilation, dissemination and uses of data and information on disability.15 The Guidelines recommend that the measurement of disability be carried out within the conceptual framework of the WHO International Classification of Functioning, Disability and Health (ICF), which provides standardized concepts and terminology that can be used in disability measurement.16 Nevertheless, the first time the idea of a provision concerning the collection of statistics and other data was proposed in the preparatory discussions to the CRPD was from the outcome of an expert group meeting held in Bangkok from 2 to 4 June 2003 where data collection was recommended as an obligation for the purpose of reporting and monitoring.17 At the third session of the Ad Hoc Committee such a provision was finally incorporated in the draft Convention prepared by the Working Group of the Committee.18 Placed in article 6 of the draft convention, the draft article seemed more preoccupied with the idea that data collected on disability could infringe the human rights of persons with disabilities, rather than focus on the obligation to collect data itself. Thus, draft article 6 was not worded as an obligation of the states parties to secure data and research on the lives of persons with disabilities, but as a request to states parties to ‘encourage’ the collection, analysis, and codification of statistics and information on disabilities. To that end it was suggested that the draft article should be titled ‘Protection of Statistics and Data’, arguing that this was what it actually reflected in the text. Draft article 6 read: In order to formulate and implement appropriate policies to protect and promote the rights of persons with disabilities, states parties should encourage the collection, analysis, and codification of statistics and information on disabilities and on the effective enjoyment of human rights by persons with disabilities. The process of collecting and maintaining this information should: a. respect the right to privacy, the dignity and the rights of persons with disabilities, and the information collected from persons with disabilities should be on a voluntary basis; b. be kept only in a statistical format without identifying individuals and should be kept secure to prevent unauthorised access or misuse of information; c. ensure that the design and implementation of data collection is done in partnership with persons with disabilities, their representative organisations and all other relevant stakeholders; d. be disaggregated according to the purpose of the collection of information and should include age, sex and type of disability; e. include detailed information on their access to public services, rehabilitation programs, education, housing and employment;
15 The Guidelines build on the ‘Manual for the Development of Statistical Information for Disability Programmes and Policies’ (United Nations publication, Sales No E 96 XVII 4) and the section on disability characteristics contained in the ‘Principles and Recommendations for Population and Housing Censuses’ Revision 1 (United Nations publication, Sales No E 98 XVII 8). 16 The ICF is further described below in the section concerning Art 31(1). 17 See Ad Hoc Committee, Working Group to draft a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, ‘Documents of the second session: Bangkok recommendations on the elaboration of a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities’—outcome of an expert group meeting and seminar held in Bangkok at the headquarters of the Economic and Social Commission for Asia and the Pacific from 2 to 4 June 2003, UN Doc A/AC 265/CRP 10 (2–4 June 2003) para 33(e). 18 ibid ‘Documents of the third session, Report of the Working Group to the Ad Hoc Committee, Annex I: Draft articles for a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (24 May to 4 June 2003) paras 26–33, available at: .
pedersen and ferretti
928
Statistics and Data Collection
f. adhere to established ethics regarding respect for anonymity and confidentiality in the collection of statistics and data.
Draft article 6 was unarguably the result of different views within the Working Group regarding the inclusion of such a provision in the Convention.19 Several countries, among others South Korea, Sweden, Serbia and Montenegro, had reservations on the subject and some countries urged caution to ensure that the requirements of the provision did not conflict with national policies, especially as regards privacy. The World Network of Users and Survivors of Psychiatry (WNUSP) stated that for WNUSP to support a provision on data, the focus of the data collected should be on access and rights, rather than disability per se. Other countries, such as India, Morocco, China, Venezuela, and Ecuador, clearly supported a provision on statistics and data collection in the CRPD and emphasized that without data on disability it would be impossible to provide the necessary services, programmes, and support to persons with disabilities.20 The Asia Pacific Disability Forum also supported inclusion of such a provision and noted that: Most organizations of PWD in the Asia Pacific region have struggled to get a disability dimension included in census efforts. With the competing demands for resources in all countries, this kind of information becomes a valuable tool for PWD to advocate for proper resource allocation to disability issues and for the development of national policies that address their concerns. This is done in the area of gender and has been impactful. It will also assist states in reporting efforts.21
Commenting on the draft article the Israel Human Rights Centre for People with Disabilities observed that collection of data was ‘a tool in the promotion of rights, not a right in itself ’.22 As a result, some members of the Ad Hoc Committee argued that article 31 did not even belong in a human rights treaty at all.23 Nevertheless, the delegations in strong support of the inclusion of an article on statistics and data collection in the text of the CRPD emphasized that its inclusion would ‘allow states to respond more effectively to the needs of persons with disabilities and to have an accurate assessment of the situation of the persons concerned so as to implement programmes for their benefit’.24 At the time of the fourth session of the Ad Hoc Committee there was general agreement on the need for a provision in the CRPD on the topic of data and statistics and that this provision should be a separate article and not merged with any article on monitoring, thus indicating that the pertinent obligations envisaged were somewhat different to those regarding monitoring of the CRPD; perhaps in respect of both the content of the obligation and the stakeholders affected by the provisions.25
19 ibid ‘Daily Summary related to Draft Article 6 Statistics and Data Collection’ (14–15 January 2004) vol 3 Nos 8–9, available at: . 20 21 ibid 15 January 2004 daily summary (vol 3 No 9). ibid. 22 See Ad Hoc Committee, Working Group to draft a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, ‘Report of the third session’ (24 May to 4 June 2003), Comments, proposals and amendments submitted electronically, available at: . 23 ibid Annex II: ‘Compilation of proposed revisions and amendments made by the members of the Ad Hoc Committee to the draft text presented by the Working Group as a basis for negotiations by Member States and Observers in the Ad Hoc Committee’ UN Doc A/AC 265/2004/5 (9 June 2004) fn 23. 24 ibid. 25 ibid ‘Daily Summary related to Draft Article 6 Statistics and Data Collection’ (25 and 31 August and 1 September 2004), vol 5, nod 3, 7–8, available at: .
pedersen and ferretti
Article 31
929
The final wording and inclusion of the article was not yet in place, and paragraphs 2 and 3 of what would become article 31 were not even proposed before the seventh session of the Ad Hoc Committee in January 2006.26 Paragraph 2 was added by the Chairman of the Ad Hoc Committee, Don MacKay, in a letter to all members of the Committee in October 200527 and paragraph 3 was added during the seventh session.28 The Drafting Committee’s work on the draft convention after the eighth session and prior to the final adoption of the CRPD on 13 December 2006 did not include any changes to the content of the provision, which in addition was not discussed further by the Ad Hoc Committee. In the following section we will consider more closely the nature and scope of the states parties’ obligation to collect statistics and research data.
3. Paragraph 1 3.1 ‘Undertake to collect’ The obligation to collect data is addressed to the states parties. The first drafts of article 31 seemed none the less to limit states parties’ obligations, so that they should only ‘encourage’ the collection of data. Nevertheless, the wording was changed and it became—quite clearly— the obligation of states parties to secure the collection of the data mentioned in article 31. As explained below, article 31 is foremost a measure for the implementation of the rights recognized in the CRPD. For that reason, it cannot be categorized as an economic, social, and cultural right, nor as a civil and political right. Hence, the guidance found in article 4(2) CRPD, on the fulfilment of the rights and duties in the Convention, does not affect the fulfilment of article 31. Article 31 provides that states parties shall ‘undertake’ to collect data, which reflects the same wording as in article 4(2), regarding the progressive realization of the economic, social, and cultural rights in the CRPD. In this light, it seems reasonable to conclude that article 31 obliges states parties to take any measures to the maximum of their available resources in order to achieve progressively the full realization of the obligation to collect robust, consistent, and comparable data. So far, there is no General Comment or Statement on article 31 from the CRPD Committee. Nor has the CRPD Committee developed specific guidelines on this matter, such that could clarify the scope of the obligation. Nevertheless, the CRPD Committee has addressed the subject in its 2016 Reporting Guidelines.29 The Reporting Guidelines provide that states parties should report on: 226 Steps taken to develop data collection tools in accordance with the human rights-based approach to disability and focusing on the disabling barriers experienced by persons with disabilities. In fact, the provision was not discussed at all at the fifth and sixth sessions of the Ad Hoc Committee. See Ad Hoc Committee, Working Group to draft a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, ‘Documents of the seventh session’ (16 January to 3 February 2006), Letter dated 7 October 2005 from the Chairman to all members of the Committee UN Doc A/AC 265/2006/1 (16–27 January 2006) paras 106–08. At that point draft Art 31 was intended to be rapidly concluded. 28 ibid, ‘Comments, proposals and amendments submitted electronically’, available at: . 29 ‘Guidelines on periodic reporting to the Committee on the Rights of Persons with Disabilities, including under the simplified reporting procedures, adopted by the Committee at its 16th Session’ (15 August–2 September 2016), available at: . 26 27
pedersen and ferretti
930
Statistics and Data Collection
227 Steps taken to incorporate human rights–based indicators in data collection and analysis respecting, among others, human rights and fundamental freedoms, ethics, legal safeguards, data protection, confidentiality and privacy. 228 Steps taken to ensure the full and meaningful participation of representative organizations of persons with disabilities in the full process (design/planning, implementation, analysis and dissemination) of data collection and research, through among others, capacity building of those organisations. 229 Steps taken to establish coordinated systems between all entities collecting data on persons with disabilities which ensures reliability and diminishes discrepancies. 230 Steps taken to further disaggregate data, by age, sex, and other relevant factors, in order to identify and address the barriers faced by persons with disabilities in exercising their rights, for the purpose of formulating and implementing policies to give effect to the Convention. 231 Steps taken to ensure the dissemination of statistics in formats accessible to persons with disabilities.30
Though the obligation lies with states parties, article 31 calls for inclusion of DPOs in the collection, analyses and dissemination of data, eg regarding the choice of criteria used in gathering that data.31 Including persons with disabilities in the implementation and monitoring process is a fundamental principle of the CRPD, which is not in any way limited to article 31.32 That the realization of article 31 requires more than the involvement of the states parties’ national statistical commissions is also clearly expressed in the Committee’s Guidelines on ‘Independent Monitoring Frameworks’, where the task of improving the systems for collecting and analysing data on the implementation of the rights set forth in the Convention is considered a collective, coordinated and continuous effort by, among others, the focal points and coordination mechanisms appointed under article 33(1) of the Convention, United Nations agencies, regional organizations, independent monitoring frameworks, civil society organizations, and persons with disabilities.33 Recent years have seen work on developing disability-appropriate collection of data on a more systematic and coordinated fashion. One example is a set of projects from the European Union Agency for Fundamental Rights (FRA) on conceptualizing disability specific indicators on key articles of the CRPD, such as article 19 (the right to independent living) and article 29 (the right to political participation). Contributing to the European Union’s CRPD Monitoring Framework the projects aim to develop indicators and collect data on the right of people with disabilities, inspired by the structure-process- outcome framework developed by the United Nations Office of the High Commissioner for Human Rights.34
ibid paras 226–31. See eg CRPD Committee, ‘Concluding Observations on the Initial Report of Paraguay’ UN Doc CRPD/ C/PRY/CO/1 (15 May 2013) para 72. 32 eg Preamble (m), Art 3(c), and Art 33(3) CRPD. 33 CRPD Rules of Procedure UN Doc CRPD/C/1/Rev 1 (10 October 2016) Annex, Guidelines on Independent Monitoring Frameworks and their participation in the work of the Committee, para 36. 34 An example of indicator-specific types of questions developed in relation to the CRPD, available at: . 30 31
pedersen and ferretti
Article 31
931
3.2 ‘Appropriate information’ In brief, article 31 entails an obligation to systematically collect, analyse, and disseminate all relevant data, viz all data that would benefit the implementation of the CRPD. The European Union had initially suggested that the wording of para 1 be changed so that an obligation to collect data only emerges ‘where necessary’. Even though such a wording did not find support by the majority of the Ad Hoc Committee, there should be little doubt that article 31 entails only an obligation to collect statistics and research data where it is relevant in order to give effect to the Convention. The real challenge, however, does not seem to be when it is relevant to collect data, but rather how to collect relevant data. The Committee has addressed the fulfilment of article 31 in all of its concluding observations to date, emphasizing the importance of collecting data on disability but has elaborated little on the content and nature of such data. It is clear that the data collected by states parties must take a rights-based approach and additionally consider the paradigm shift from the medical to the social model articulated in the CRPD.35 This entails that data collected must capture the definition of disability in article 1 CRPD. A specific challenge in collecting robust data on disability is consequently how to include in the surveys36 and censuses the broadest possible range of persons with disabilities, including those who may be the most marginalized. In that regard, scholars have raised serious concerns about linking rights and data: Accuracy of the data on disability collected by national governments, bilateral and multilateral donor agencies will continue to be a very important issue that needs to be addressed if the enforcement of disability rights is to become an effective reality. Recent literature suggests that it is highly likely that in a number of countries, statistical data on disability currently available has significantly underestimated the number of disabled people due to multiple issues including stigma, negative social attitudes regarding disabled people, as well as issues related to measurement and the way survey and census questions are phrased (Altman, Rasch & Madans, 2006; Loeb, Eide & Mont, 2008). This will need to be addressed if statistics are going to be linked to rights.’37
It is apparent that a common understanding of disability in the context of collecting data for statistical and research purposes is a prerequisite for achieving the valid and reliable data which article 31 demands. The WHO’s International Classification of
35 See eg CRPD Committee, ‘Concluding Observations on Peru’ UN Doc CRPD/C/PER/CO/1 (16 May 2012) para 47. 36 Socio-demographic statistics are normally obtained using self-reporting in the form of surveys. When the respondent is either too young or too ill to understand the questions people of that household will need to answer. As explained by ESCAP: ‘The advantages of these measures are that they are easy to apply and do not require complex assessment procedures that can only be done by trained professionals. Thus these are relatively straightforward measures to obtain population level data. . . . However the main disadvantage of self reported measures is that they are subjective and reflect individual interpretations, views and life contexts. The response provided is only as good as the respondents’ accuracy of understanding, interpretation and selection of responses from the set provided.’ ‘Guidelines for Cognitive and Pilot Testing of Questions for Use in Surveys’ (ESCAP 2010) 9, available at: . 37 Raymon Lang et al, ‘Implementing the United Nations Convention on the rights of persons with disabilities: principles, implications, practice and limitations’ (2011) 5 Alter European Journal of Disability Research 214.
pedersen and ferretti
932
Statistics and Data Collection
Functioning, Disability and Health (ICF)38 has—with its grounding in the social model of disability—the potential of becoming the international standard to measure disability when monitoring the implementation of the CRPD, which could even make cross country-comparison possible.39 The ICF includes a list of environmental factors making the definition of disability reliant on the context of each individual. As the ICF lends itself to measuring disability at both individual and population levels its aim of becoming a single generic instrument for assessing disability across different cultures and settings should be considered with even greater force. Scholars have argued that the ICF is relevant for the fulfillment of both the obligation to generate data on disability and the monitoring of the Convention, this being the case in terms of gathering data (wording of survey and census questions) along with developing relevant indicators to measure the implementation of the Convention.40 Thus, the ICF has been suggested as being capable of playing an important role in the monitoring process, technically as well as politically: Technically, the ICF is the only world standard, proven to be valid and reliable, that is available for disability data collection and management. [. . .] Prima facie, then, where monitoring requires data collection by means of a survey, questionnaire, administrative record or some other mechanism, ICF offers the prospect of coordinating internationally comparable disability data relevant to the CRPD monitoring process.41
There are other approaches to disability-related data and statistics traditionally used to assess the relative effect of public health interventions for persons with disabilities; the one most often used being the Disability-Adjusted Life Year (DALY). In addition to only measuring the mortality of a population group, the DALY incorporates a measure of the impact of living with a disability through ‘social value weights’. Even though DALY is an improvement compared to merely measuring mortality it only reflects the medical condition associated with personal functional limitations and does not reveal public health interventions that mitigate the effects of a health condition.42 Therefore, the DALY seems more suitable to measure the general health condition of a population rather than being a standard for collecting valid and reliable disability data. At present, the ICF seems to be the most relevant option for the purpose of becoming the international standard to measure disability for the purposes of the CRPD. The obligation to collect data under article 31 encompasses all areas of society, eg education, health, employment, etc. In addition, the situation of specific groups of persons with disabilities who may be subject to multiple forms of exclusion must be taken into consideration when collecting data.43 Data collection must also be supplemented by
38 ICF was officially endorsed by all 191 WHO member states in the fifty-fourth World Health Assembly on 22 May 2001 WHO Res 54.21 (22 May 2001), available at: . 39 Daniel Mont et al, ‘A Functional Approach to Assessing the Impact of Health Interventions on People with Disabilities’ (2010) 4 Alter European Journal of Disability Research 161–72. 40 See Jerome E Bickenbach, ‘Monitoring the United Nation’s Convention on the Rights of Persons with Disabilities: Data and the International Classification of Functioning, Disability and Health’ (2011) 4 BMC Public Health 1–8. 41 42 ibid 5. Mont et al (n 39) 161. 43 See CRPD Committee, ‘Concluding Observations on the Initial Report of Argentina’ UN Doc CRPD/ C/ARG/CO/1 (8 October 2012) para 50.
pedersen and ferretti
Article 31
933
genuine comparison.44 Given the international nature of the CRPD, the notion of comparability refers not only to the national level but to regional and international levels as well. So far, cross-national comparison has been difficult or even impossible to carry out because definitions and methodologies for the collection of data have not been consistent among states. Choosing a suitable definition of disability that also conforms to the definition used in the Convention is one example as is shown in the references to the ICF above. Nonetheless, the often limited and inconsistent questions on disability in national surveys and censuses pose just as great a challenge for cross-national or even regional comparison.45 Comparing the level of implementation of the CRPD in different states is therefore not yet feasible. It is evident from article 32 CRPD that efforts to overcome this obstacle must be derived through international cooperation, which in return can support national efforts for the realization of the purpose and objectives of the Convention. In order to fulfil the objectives of article 31 in connection with article 32 CRPD, attempts are on-going to systemize and harmonize the collection of data. In fact, the work on creating a disability definition suitable for measurement in a way that is applicable in all countries despite cultural differences began way before the signing of the CRPD with the work of the Washington Group on Disability Statistics (WG) in 2001. The work of the WG and further attempts that have been made to structure research questions and key disability indicators in order to identify any gaps that might exist in implementing and monitoring the CRPD are further described in the end of this chapter.
3.3 ‘Give effect’ to the CRPD The obligation in article 31 to collect statistical and research data is closely linked to all of the rights and duties inherent in the CRPD. Thus, article 31 reminds us that the collection of robust, consistent, and comparable data on disability, disaggregated to enable identification of discrimination and disparities in the realization of rights, is an essential part of implementing the CRPD.46 To this end, article 31 is also closely related to those parts of the CRPD concerned with implementation and monitoring. Statistics can support legislative developments, policymaking, and institutional strengthening for monitoring and reporting on implementation.47 When reporting to the Committee states parties are also called upon to provide equal consideration to measures related to the legislative and policy frameworks, the processes in place, and the result and outcomes of these processes.48
44 Eilionóir Flynn, From Rhetoric to Action: Implementing the UN Convention on the Rights of Persons with Disabilities (CUP 2011) 273–74. 45 Raymon Lang et al (n 37) 214. 46 See eg Briefing note on the collection and dissemination of disability statistics, United Nations, Department of Economic and Social Affairs, Statistics Division, Demographic and Social Statistics Branch, 30 August 2004, available at: ; ‘Guidelines on periodic reporting to the Committee on the Rights of Persons with Disabilities, including under the simplified reporting procedures’, adopted by the Committee at its 16th Session (15 August–2 September 2016) paras 1(j) and 2, available at: ; Michael Ashley Stein and Janet E Lord, ‘Monitoring the Convention on the Rights of Persons with Disabilities: Innovations, Lost Opportunities, and Future Potential’ (2010) 32 HRQ 726. 47 Anna Lawson and Mark Priestley, ‘Potential, Principle and Pragmatism in Concurrent Multinational Monitoring: Disability Rights in the European Union’ (2013) 17 International Journal of Human Rights 739, although they talk about statistics as a monitoring tool in general and not regarding the CRPD specifically. 48 ‘Guidelines on periodic reporting to the CRPD Committee’ (n 46) para 1 litra (j).
pedersen and ferretti
934
Statistics and Data Collection
Seemingly, the CRPD Committee has—since the adoption of the Convention in 2006—put progressively more emphasis on the role of article 31 as a tool to implement and measure the realization of the CRPD. On several occasions, the CRPD Committee has stressed the need for indicators to support legislative developments.49 Likewise, the WHO has stressed the importance of improving statistical information on disability in order to develop internationally comparable indicators for policy purposes.50 Eventually, in the 2016 Reporting Guidelines, the CRPD Committee stipulated that the Guidelines are predicated on the human rights-based approach to indicators developed by the Office of the UN High Commissioner for Human Rights (OHCHR).51 The framework developed by OHCHR is a response to a longstanding demand to develop and deploy appropriate statistical indicators to help measure progress in human rights and to strengthen the capacity of states parties in meeting their human rights obligations.52 In the last cycle of reporting, all of the concluding observations of the CRPD Committee53 linked article 31 to target 17.18 of the Sustainable Development Goals (SDGs).54 Nevertheless, the practice of developing human rights statistics as a framework for implementing and monitoring human rights remains in a state of infancy.55 The aims of the CRPD can only be achieved if national research and statistical capacities are strengthened and further developed for the collection, analyses, and dissemination of disability statistics.56 Furthermore, cooperation between statistical capacities and NHRIs and/or other independent mechanisms must be further developed and supported in order to identify and address challenges met by persons with disabilities.57 Thus, in keeping with article 31, it must be the aim of the statistical data collected and the research carried out to formulate and implement policies to give effect to the CRPD. One example that gives effect to the CRPD by pushing for change in national policies and programs through documentation is a data-based publication by the Australian Human Rights Commission.58 The publication is part of a national disability strategy to 49 See eg ‘Note by the Secretariat: Conference of States Parties to the Convention on the Rights of Persons with Disabilities Seventh session, matters related to the implementation of the Convention: round table 2 National implementation and monitoring’ UN Doc CRPD/CSP/2014/3 (1 April 2014) para 38; CRPD Committee, ‘Concluding Observations on the Initial Report of Tunisia’ UN Doc CRPD/C/TUN/CO/1 (13 May 2011) para 37; CRPD Committee, ‘Concluding Observations on the Initial Report of Spain’ UN Doc CRPD/C/ESP/CO/1 (19 October 2011) para 50. 50 See WHO, ‘World Report on Disability’ (WHO 2011) 45, available at: . 51 ‘Guidelines on Periodic Reporting to the CRPD Committee’ (n 46) para 1 litra (j). 52 The OHCHR Indicator Framework is available at: . 53 The last reporting cycle included Bolivia, Ethiopia, Italy, United Arab Emirates, Colombia, and Guatemala. 54 UN’s Sustainable Development Goals available at: . 55 OHCHR, ‘Human Rights Indicators: A Guide to Measurement and Implementation’ (HR/PUB/12/5 2012) III; Todd Landman, Measuring Human Rights (Routledge 2010) 3. 56 Stein and Lord (n 46). 57 See eg OHCHR, ‘Human Rights Indicators’ (n 55), where it is stated that ‘policy management, human rights and statistical systems are closely interrelated and thus need to be in tune with each other for promoting the well-being of people. Devising a policy or statistical indicator is not a norm or value-neutral exercise. Yet, integrating human rights in these processes is not only a normative imperative, it also makes good practical sense. Failing to do so can have real consequences.’. 58 Australian Human Rights Commission, ‘Willing to Work: National Inquiry into Employment Discrimination Against Older Australians and Australians with Disability’ (Australian Human Rights Commission 2016), available at: .
pedersen and ferretti
Article 31
935
90 80 70 60 %
50 40 30 20 10 0 15 to 24
25 to 34
35 to 44
45 to 54
55 to 64
Age (years) With disability
Without disability
Figure 31.1 Labour force participation rates by Age by Whether has a disability, 2012. © Commonwealth of Australia 2015 Source(s): Survey of Disability, Ageing and Carers, 2012.
increase access to employment opportunities for people with disability.59 From the related online fact sheet, data is used to compare persons with disabilities with the rest of the population, and disaggregated on factors such as age, as seen in the figure 31.1. The figure documents a clear discrepancy between persons with or without disabilities regarding inclusion in the labour market, with the latter group’s participation rate peaking between the ages of twenty-five to thirty-four, well below any other age interval for persons without disabilities. Documentation of such discrepancies can be used to set goals for policy-making and eventually generate change towards the fulfilment of the rights and obligations of the CRPD.
4. Paragraph 1(a) Article 31 CRPD is procedural in nature and concerns the collection and use of data on disability for statistical and research purposes. It is a measure functional to the substantive rights that the CRPD recognizes. Acting in response to an historical unavailability of data regarding persons with disabilities, article 31 CRPD provides for the collection of data, statistics and research for the twofold purposes of (i) monitoring the implementation of the substantive rights recognized in the CRPD and the duties imposed on states parties, and (ii) facilitating the implementation of the CRPD by supporting the formulation of policies to give effect to obligations encompassed therein. To the extent that the data to be collected and used by states parties include personal data that are necessary for the realization of each CRPD right, there were evident concerns during the travaux concerning the possible misuse or abuse of such data in relation See .
59
pedersen and ferretti
936
Statistics and Data Collection
to the right to privacy and dignity of persons with disabilities.60 This was particularly the case because data collection requires consistent and comparable disaggregated data across states and on all areas of society, including sensitive characteristics such as gender, age, types of disability, health features, education, employment, ethnicity, urban or rural geographical settings, and other relevant categories.61 In order to counter the risks associated with any operation or set of operations undertaken with respect to personal data (eg collection, recording, organization, structuring, storage, adaptation or alteration, retrieval, consultation, use, disclosure by transmission, dissemination, or otherwise making available, alignment or combination, restriction or blocking, erasure or destruction62), article 31(1)(a) includes a general reference to legally established safeguards on how to process such data, and a particular reference to the applicable data protection law. These are instrumental legal tools to protect the substantive rights of confidentiality and privacy of disabled people. A comparative analysis of data protection laws is beyond the scope of this analysis, particularly since in their vast majority data protection laws do not offer any particular treatment to disabled persons. The following analysis will be predicated almost entirely on EU data protection laws and principles on the ground that these are the standard-setters globally.
4.1 Legally Established Safeguards The concept of ‘legally established safeguards’ refers to national or regional laws (eg EU law) that may govern the collection and use of disability data for statistical activities. These may be re-conducted to local regulatory frameworks binding the state parties and they should not be confused with the internationally accepted standards or ethical principles to be employed in the collection and use of statistics. The latter in fact, are separately accounted for in article 31(1)(b) CRPD and they are typically encompassed in international instruments such as the UN Fundamental Principles of Official Statistics63 or the UN Principles Governing International Statistical Activities64 or the UN Disability Statistics database. As far as the European Union (‘EU’) is concerned, the organisation of statistics is established via the European Statistical System (‘ESS’), which is represented by the network cooperation between ‘Eurostat’ and the equivalent national organizations in the member states. The legal basis of the European statistical functions may be found in article 338 60 See ‘Report of the Third Session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (24 May to 4 June 2004), where a number of delegations ‘expressed a concern for the respect of the right to privacy and the risk of misusing the information, and considered that such an article did not belong in a human rights treaty. They considered that statistics were not useful as a policy tool, and that resources spent in data collection should be used instead in programmes for persons with disabilities. There should be a mainstreaming of surveys and not just surveys for persons with disabilities.’ On an earlier scholarly account of the possible abuses of statistical data see also Kingsley R Browne, ‘The Use and Abuse of Statistical Evidence in Discrimination Cases’ in Titia Loenen and Paulo R Rodrigues (eds), Non-Discrimination Law: Comparative Perspectives (Brill 1999) 411–23. 61 CRPD Committee, ‘Guidelines on treaty-specific document to be submitted by State Parties under Article 35, paragraph 1, of the Convention on the Rights of Persons with Disabilities’ UN Doc CRPD/C/2/ 3 (18 November 2009). 62 See the combined definitions of ‘data processing’ under Directive 95/46/EC (n 76) and the GDPR (n 77). 63 UNGA Res 68/261 (29 January 2014), Annex ‘Fundamental Principles of Official Statistics’. 64 Committee for the Coordination of Statistical Activities, Principles Governing International Statistical Activities (3 March 2014), available at: .
pedersen and ferretti
Article 31
937
of the Treaty on the Functioning of the European Union (‘TFEU’), which lays down the essential traits for the elaboration of statistics that—among other features—shall conform to statistical confidentiality. In order to give effect to article 338 TFEU, Council Regulation 322/9765 explicitly recognizes the importance of protecting the confidential information collected by national and EU authorities for the production of EU statistics, with a view to achieving and maintaining the confidence of the parties responsible for providing this information.66 At the same time, it ensures that the confidentiality of statistical information satisfies the same set of principles in all member states. For this purpose, it deems necessary to establish a common concept of ‘confidential data’ to be used in relation to the production of EU statistics. This concept must take into account the fact that data taken from sources available to the public are considered confidential under certain national laws.67 The definition of ‘statistical confidentiality’ focuses on the protection of data related to single statistical units that are obtained directly for statistical purposes or indirectly from administrative or other sources against any breach of the right to confidentiality. At the same time, it implicitly prevents the non-statistical utilization of the data obtained and their unlawful disclosure.68 Accordingly, data is considered confidential when it allows identification directly or indirectly, thereby disclosing individual information. For the purpose of identifiability, account needs to be taken of all the means that might reasonably be used by a third party to identify the data. By derogation, data in the public domain cannot be considered confidential.69 The transmission between statistical authorities of confidential data that does not lend itself to direct identification may take place to the extent that this transmission is necessary for the production of specific EU statistics. Any further transmission must be explicitly authorized by the national authority that collected the data.70 Confidential data obtained for the production of statistics can only be used by the relevant authorities exclusively for such purposes, unless the respondents have unambiguously given their consent to the use for any other purposes.71 Importantly, the EU and its member states must take all necessary regulatory, administrative, technical, and organizational measures to ensure data security—ie the physical and logical protection of confidential data—and to ensure that no unlawful disclosure and non-statistical uses occur when the statistics are disseminated.72 This is where specific national law that may exist on data collection by national authorities becomes relevant. At EU level, Decision 97/281/CE implements Regulation 322/97 as regards the role and functioning of Eurostat.73 Likewise, the ESS has adopted a European Statistics Code of Practice as a self-regulatory instrument containing standards for the independence of national and EU statistical authorities.74 The
65 Council Regulation (EC) No 322/97 of 17 February 1997 on Community Statistics, OL 052 22/02/ 1997 at 0001–0007. 66 67 Recital 13 of Regulation 322/97. Recitals 14 and 15 of Regulation 322/97. 68 69 70 71 ibid Art 10. ibid Art 13. ibid Art 14. ibid Art 15. 72 ibid Art 18. 73 Commission Decision of 21 April 1997 on the Role of Eurostat as Regards the Production of Community Statistics (97/281 /EC) OJ L 112/56. Of particular relevance for the confidentiality of the data see Art 9 according to which ‘Data considered confidential pursuant to Article 13 of the (. . .) Regulation shall be made accessible within the Commission, according to the Articles in Chapter V of the (. . .) Regulation, only to officials of Eurostat, other staff of Eurostat and other natural persons working on the premises of Eurostat under contract, and shall be used by them only for the purposes defined in the framework of the (. . .) Regulation’. 74 Promulgated in ‘Communication from the Commission to the European Parliament and to the Council on the independence, integrity and accountability of the national and Community statistical authorities’
pedersen and ferretti
938
Statistics and Data Collection
concept of statistical confidentiality has close links with the rights conferred under data protection law where it exists, as also explicated in article 31(1)(a) CRPD.
4.2 Data Protection Under the tenets of article 31(1)(a) CRPD data protection remains anchored to the protection of the confidentiality and the privacy of individuals. Clearly, this reflects the conceptualization that was generally accepted by the states parties at the time of the drafting of the CRPD—a view that still remains common in many jurisdictions outside the EU. However, to a significant extent, this connotation reflects an outdated understanding of the modern notion of data protection as developed under EU law. Personal data protection is a distinctive European innovation in law that over the years has been gaining a mixed fortune outside the EU as well. Its genesis and vicissitudes over time explain why for long it was—and to a large extent outside the EU still is— understood as privacy protection. The horrors of twentieth-century European history and the subsequent international conventions75 played an important role in the development of data protection laws across the Old Continent and, ultimately, in the adoption of the Data Protection Directive 95/46/EC,76 which has now shaped the General Data Protection Regulation (‘GDPR’)77 that will enter into force in May 2018. Two factors proved decisive for their enactment under the remit of the EU: (i) the progressive development in information technologies transcending national borders; and (ii) the need for the free movement of personal data within the EU to enable trade and prevent conflicts arising from separate national regimes.78 Indeed, the underlying aims and scope of Directive 95/46/EC were both the protection of fundamental rights and freedoms of European citizens, as well as the achievement of the internal market. Both objectives were equally important, even though the jurisdiction of the EU on this subject rested on internal market grounds, having its legal basis in article 100a of the EC Treaty (now article 114 TFEU). All the same, the EU legislator consistently took a rigorous ‘fundamental human rights’ approach.79 Data protection has become a complex and multifaceted concept both from a societal and a legal point of view. Traditionally, its primary objective has been identified with the protection of personal privacy within the context of processing operations involving personal data. Scholarly debates have helped to largely accept that in general terms privacy /COM/2005/0217 final. The Code of Practice sets out 15 key principles and standards for developing, producing and disseminating European statistics. It builds upon a common ESS definition of quality in statistics and targets all relevant areas from the institutional environment, the statistical production processes to the European official statistics. It is available at: . The Code is inspired by the UN statistical principles (n 64). 75 See Council of Europe, Convention for the Protection of Human Rights and Fundamental Freedoms, ETS No 5, adopted on 4 November 1950; Council of Europe, Convention for the Protection of Individuals with regard to Automatic Processing of Personal Data, ETS No 108, adopted on 28 January 1981. 76 77 OJ 1995 L 281 at 0031–0050. Regulation (EU) 2016/679, OJ 2016 L 119 at 1–88. 78 Recitals 1–11 of Directive 95/46/EC. 79 Dorothee Heisenberg, Negotiating Privacy (Lynne Rienner 2005); Viktor Mayer- Schonberger, ‘Generational Development of Data Protection in Europe’ in Philip E Agre and Marc Rotenberg (eds), Technology and Privacy: The New Landscape (The MIT Press 1997) 219–41; Spiros Simitis, ‘From the Market to the Polis: The EU Directive on the Protection of Personal Data’ (1995) 80 Iowa Law Review 445–69; cf, on the utilitarian approach of the UK, Andrew T Kenyon and Megan Richardson, ‘New Dimensions in Privacy: Communications Technologies, Media Practices and Law’, in Andrew T Kenyon and Megan Richardson (eds), New Dimensions in Privacy Law (CUP 2006) 1–10.
pedersen and ferretti
Article 31
939
protection is a legal way of drawing a line at how far society or other entities (physical or legal) may intrude into a person’s personal or private affairs. It entails that all persons should be entitled to conduct their personal (legitimate) affairs relatively free from unauthorised or unwanted intrusions.80 The considerable body of literature and many debates on privacy exemplify the difficulty in delineating what remains a broad and at times ambiguous concept, but they also help to set the basis for distinguishing ‘data protection’ from ‘privacy’. At least under EU law—the foreparent and internationally recognized front-runner of modern data protection legislation worldwide—the two have transformed into distinct, yet complementary, fundamental rights which derive their normative force from values that, although at times overlapping and interacting in many ways, are nevertheless conceptualized independently. Normatively, this position is explicit in article 16 TFEU which elevates data protection to a ‘provision of general application’ under Title II alongside other fundamental principles of the EU. Equally, with the Treaty of Lisbon, the Charter of Fundamental Rights of the EU has become binding, and in its article 8 it recognises the protection of personal data as an autonomous right distinguished from that of ‘privacy’ in article 7.81 Data protection refers to the protection through regulation of personal information pertaining to an identified or identifiable individual (‘data subject’). Individuals do not 80 See eg Samuel Warren and Louis Brandeis, ‘The Right to Privacy’, (1890) 4 Harvard Law Review 193– 220; Edward J Bloustein, ‘Privacy as an Aspect of Human Dignity: An Answer to Dean Prosser’ (1964) 39 New York University Law Review 962–1007; Stig Stromholm, Right of Privacy and Rights of the Personality (Norstedt 1967); Roland J Pennock and John W Chapman (eds), Privacy (NOMOS XIII 1971); Jeffrey Paul et al (eds), The Right of Privacy (CUP 2000); James Rachels, ‘Why Privacy Is Important’ (1975) 4 Philosophy and Public Affairs 323–33. Other narrower views of privacy see it as self-determination, intimacy, or a meaningful aspect of interpersonal relationships, personal expression, and choice—see eg William A Parent, ‘Privacy, Morality and the Law’ (1983) 12 Philosophy and Public Affairs 269–88. Robert S Gerstein, ‘Intimacy and Privacy’ (1978) 89 Ethics 76–81; Alan F Westin, Privacy and Freedom (Atheneum 1967); Julie C Inness, Privacy, Intimacy, and Isolation (OUP 1992); Charles Fried, An Anatomy of Values (Harvard University Press 1970); Ruth E Gavison, ‘Privacy and the Limits of the Law’ (1980) 89 Yale Law Journal 421–71; Adam D Moore, ‘Intangible Property: Privacy, Power, and Information Control’ (1998) 35 American Philosophical Quarterly 365–78; Ferdinand D Schoeman (ed), Philosophical Dimensions of Privacy: An Anthology (CUP 1984); Judith W DeCew, In Pursuit of Privacy: Law, Ethics, and the Rise of Technology (Cornell University Press 1997). Such an individualistic approach to privacy has been criticized by scholarship arguing that greater recognition should be given to the broader social importance of privacy: other than a common value in which individuals enjoy some degree of it, privacy is seen as a public and collective value vis-à-vis technological developments and market forces, requiring minimal levels of privacy for all—see Priscilla M Regan, Legislating Privacy (University of North Carolina Press 1995). There exists a number of works critical of privacy, too: the so-called ‘reductionist approach’ eg takes the view that the right to privacy is derivative, meaning that it can be explained in the context of other rights without deserving any separate attention. As such, it can be protected through other rights without any explicit protection on its own. Any privacy violation would be better understood as the violation of other more basic rights: ultimately, the right to privacy would merely be a cluster of rights, where these rights are always overlapped by property rights or rights over the person such as bodily security, see Judith J Thomson, ‘The Right to Privacy’ (1975) 4 Philosophy and Public Affairs 295–314; for another strong critique of privacy see also Robert H Bork, The Tempting of America: The Political Seduction of the Law (Simon & Schuster 1990). These ‘reductionist approaches’ have been criticized by a number of commentators: see Thomas Scanlon, ‘Thomson on Privacy’ (1975) 4 Philosophy and Public Affairs 323–33; Jeffery L Johnson, ‘Constitutional Privacy’ (1994) 13 Law and Philosophy 161–93. 81 Art 7 Charter of Fundamental Rights of the EU emphasizes that: ‘Everyone has the right to respect for his or her private and family life, home and communications’; Art 8, instead, deals with the ‘Protection of personal data: 1. Everyone has the right to the protection of personal data concerning him or her. 2. Such data must be processed fairly for specified purposes and on the basis of the consent of the person concerned or some other legitimate basis laid down by law. Everyone has the right of access to data which has been collected concerning him or her, and the right to have it rectified. 3. Compliance with these rules shall be subject to control by an independent authority.’
pedersen and ferretti
940
Statistics and Data Collection
own information about themselves. Information does not pre-exist to its expression or disclosure but it is always to some extent constructed or created by more than one agent.82 Normatively, no proprietary rights exist on personal information. It pertains to an individual but it does not belong to him/her in a proprietary sense. Those who process personal data (‘data controllers’) have the right to do so as long as such processing is in compliance with procedural rules set by law. The objective of data protection law is to protect individuals not against data processing per se, but against unjustified collection, storage, use, and dissemination of the data pertaining to them.83 As persuasively shown by Paul De Hert and Serge Gutwirth, data protection cannot be reduced to a late privacy spin-off echoing a privacy right with regard to personal data, but it formulates the conditions under which information processing is legitimate. While privacy laws derive their normative force from the need to protect the legitimate opacity of the individual through prohibitive measures, data protection forces the transparency of the processing of personal data, enabling its full control by the data subjects where the processing is not authorised by the law itself as necessary for societal reasons.84 In short, data protection law focuses on the activities of the processors and it enforces their accountability, thus regulating this accepted exercise of power.85 Like privacy, therefore, data protection finds its roots in the idea that democratic societies should not be transformed into systems of power resting on control, surveillance, actual or predictive profiling, classification, social sorting, and discrimination. Data protection is not only a matter of individual liberty, intimacy, and dignity of individuals but a wider personality right aimed at developing social identity as citizens and consumers alike. Hence, this author is in agreement with the idea that, although ‘data protection principles might seem less substantive and more procedural compared to other rights (. . .) they are in reality closely tied to substantial values and protect a broad scale of fundamental values’86 that on many occasions overlap or intersect, but remain separate from those of privacy. For this reason, it also has important connotations for society as a whole and constitutes an important legislative tool to protect collective social goods and fundamental values of a modern democratic order where citizens freely develop their personality and autonomy. Therefore, both privacy and data protection regimes (ie seclusion and legitimate opacity on the one side and inclusion and participation on the other) represent a bundle of entitlements and tools to pursue the common goal of a free and democratic society where citizens develop their own personality freely and autonomously through individual reflexive self-determination and for collective deliberative decision-making regarding the rules of social cooperation.87
82 Antoinette Rouvroy and Yves Poullet, ‘The Right to Informational Self-Determination and the Value of Self-Development: Reassessing the Importance of Privacy for Democracy’ in Serge S Gutwirth et al (eds), Reinventing Data Protection? (Springer 2009) 45–76. 83 On discussions about individuals not owning information about themselves see Jerry Kang and Benedikt Bunter, ‘Privacy in Atlantis’ (2004) 18 Harvard Journal of Law and Technology 230–67; Rouvroy and Poullet (n 82) 45. 84 Paul De Hert and Serge Gutwirth, ‘Data Protection in the Case Law of Strasbourg and Luxembourg: Con stitutionalisation in Action’ in Serge S Gutwirth et al (eds), Reinventing Data Protection? (Springer 2009) 3–44. 85 On a critical view that data protection acts are seldom privacy laws but rather information laws, protecting data before people, see Simon G Davis, ‘Re-Engineering the Right to Privacy: How Privacy Has Been Transformed from a Right to a Commodity’, in Philip E Agre and Marc Rotenberg M (eds), Technology and Privacy: The New Landscape (The MIT Press 1997) 143–65. 86 87 De Hert and Gutwirth (n 84) 44. Rouvroy and Poullet (n 82).
pedersen and ferretti
Article 31
941
From this perspective, granting to individuals control over their personal information is not only a tool to allow them control over the persona they project in society, it is also a fundamental human right allowing the development of one’s personality in order to fully participate in society without conforming to the dictates of the majority or other commercial interests.88 In this sense, the rights conferred by data protection legislation are participatory rights of informational self-determination, where the requirement of individual consent for the processing of data becomes a cornerstone unless the processing is necessary, subject to a notice to data subjects,89 such as: for the performance of a contract to which the data subject is party; for compliance with a legal obligation of the data controller; in order to protect a vital interest of the data subject him/herself; for a public interest; or in respect of overriding rights of the data controller or third parties.90 The concepts of ‘privacy’ and ‘confidentiality’ of disabled persons should be construed in accordance with the previous discussion, alongside more particular rights and obligations conferred by law. The law permits the collection of both sensitive and non-sensitive data for specific, explicit and legitimate purposes, as long as safeguards are observed and the data are adequate, accurate, kept no longer than necessary for the purpose, and secure.91 One should note, however, that there is no mention of disability in Directive 95/46 /EC or disability as a condition qualifying the data and their processing under the GDPR. Therefore, the general rules apply. In synthesis, EU member states shall provide that data subjects are informed of the data processing92 and, in perspective, such a notice must be provided ‘in a concise, transparent, intelligible and easily accessible form, using clear and plain language’.93 However, there is an exception where data was not obtained directly from the data subject: the norm does not apply in respect of statistical, historic, or scientific research in circumstances where the provision of the notice would have been impossible or involve a disproportionate effort, or if recording or disclosure is expressly laid down by law. In these cases member states shall provide appropriate safeguards.94 Directive 95/46/EC and the GDPR similarly set out the requirements for legitimate data processing of personal data considered as non-sensitive. A data controller must be able to provide a valid basis for the processing activity only if it can claim that the processing relies on one of the criteria established by law. The set of criteria is exhaustive, so that if a data controller is unable to rely on one of these the processing is unlawful. These are laid down in article 7 of Directive 95/46/EC and reproduced with slight changes in article 6 GDPR: ( a) The data subject has unambiguously given his/her consent. (b) The data processing is necessary for the performance of a contract to which the data subject is party or in order to take steps at the request of the data subject prior to entering into a contract. (c) The data processing is necessary for compliance with a legal obligation to which the data controller is subject. (d) The data processing is necessary in order to protect the vital interests of the data subject.
89 ibid. See Arts 10 and 11 of Directive 95/46/EC and Arts 13 and 14 GDPR. See Art 7 of Directive 95/46/EC and Art 6 GDPR. 91 Art 6 of Directive 95/46/EC and Art 5 GDPR. 92 93 Arts 10 and 11 of Directive 95/46/EC and Arts 13 and 14 GDPR. Art 12 GDPR. 94 Art 11(2) of Directive 95/46/EC and Art 14(5) GDPR. 88 90
pedersen and ferretti
942
Statistics and Data Collection
(e) The data processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller or in a third party to whom the data are disclosed. (f ) The data processing is necessary for the purposes of the legitimate interests pursued by the controller or by the third party or parties to whom the data are disclosed, except where such interests are overridden by the interests for fundamental rights and freedoms of the data subject, in particular their right to privacy.
Data that reveal the racial or ethnic origin, political opinions, religious or philosophical beliefs, trade-union membership, and the processing of data concerning health or sex life are classified as ‘special categories’—or ‘sensitive’ data—and follow a tighter discipline. For disabled persons, the relevant category of such data is limited to health data (possibly, with the addition of genetic data by the GDPR).95 Within the context of data collection for the purpose of the CRPD, the processing of sensitive data of disabled persons is generally prohibited, unless the data subject has given his/her explicit consent, save where the laws of a member state provides that the prohibition may not be lifted by the data subject’s consent (eg laws regarding the ability to discern or the validity of freely given consent). However, subject to the existence of suitable safeguards, member states may, for reasons of substantial public interest, lay down exemptions either by national law or by decision of national data protection supervisory authorities—as in the case of data collection for statistical or research purposes.96 The GDPR further specifies that the processing of special categories of personal data may be necessary for reasons of public interest in the areas of public health, including disability without the consent of the data subject.97 In any event, the GDPR facilitates the collection of sensitive data for statistical purposes or research without consent when such processing is necessary98 and provided that technical and organisational measures—in particular pseudonymization—are in place to ensure respect for the principle of data minimization.99 All in all, therefore, it can be maintained that on the one hand data protection law seems to offer safeguards for the collection of disability data, even if the collection of data seems to become easier under the new rules of the GDPR. On the other hand, however, factors such as the limits of a definition of disability in EU law, as well as the lack of legislation or case law resolving real or presumed conflicts between disable people’s data collection and data protection duties, make the safeguarding contours provided by the law blurred. In order to consider the appropriate safeguards of data protection law it becomes critical to establish what type of data are necessary for the purpose. Without such an exercise the principles of data necessity and minimisation cannot be properly employed. Likewise, the distinction between sensitive and non-sensitive data determines the normative standards for data processing. The problem may be that a common understanding of disability and the data that qualify it are absent. The only definition of disability under EU law was provided in Chacón Navas,100 where the Court of Justice of the EU (‘CJEU’) delineated it the context of employment discrimination as ‘a limitation which results in particular from 95 Art 8 of Directive 95/46/EC and Art 9 GDPR. Disability is now explicated in the health data by Recital 35 GDPR. 96 97 98 Art 8 of Directive 95/46/EC. Recital 54 GDPR. Art 9 GDPR. 99 Art 89 GDPR. 100 Case C-13/05 Sonia Chacón Navas v Eurest Colectividades SA, ECLI:EU:C:2006:456.
pedersen and ferretti
Article 31
943
physical, mental, or psychological impairments and which hinders the participation of the person concerned in professional life’.101 For any limitation to be regarded as disability, it must be probable that it will last for a long time.102 The CJEU further affirmed that its definition of disability is ‘autonomous and uniform’.103 It is clear that such a definition is based on a medical or individual model of disability, where the cause of the ‘limitation’ is the ‘impairment’ of the individual, and the ‘impairment’ obstructs his/her participation in professional life. However, other views of disability exist, in particular when the medical model is contrasted with a social model of disability based on the failure of the social environment to adjust to the needs and aspirations of people with ‘impairments’ rather than from the inability of people with impairments to adapt to the environment.104 This construction is at odds with the CRPD, requiring the collection of data in accordance with the changes from the medical to the social model, which signal a shift towards the existence or else of barriers in society that could deter the disabled person’s full and effective participation in society on a non-discriminatory basis.105 The limits of disability as a nominative pathology under EU law become also apparent if one embraces a genetic model of disability where particular genotypes or DNA information reveal likely future gene mutation that causes or increases the risk of a disorder. The questions of who is protected by disability laws or laws prohibiting genetic discrimination are problematic and already dominate debates in a number of jurisdictions regarding the approach that regulation should take.106 Also, with the increase in medical or technological capabilities of changing or fixing the genetic or non-genetic compositions of human beings, there are questions relating to someone’s categorization as ‘disable’ under the law—with all the implication that this may also have on their or parents’ choices over cures.107 By analogy, therefore, it is argued that the safeguards offered by data protection legislation risk of being compromised in a likely manner. Moreover, to the extent that there is abundant evidence that people with physical and mental impairments are stigmatised, the stigma of disability demands a critical examination of societies’ beliefs about disability, normality, and diversity. The different approaches of the medical and social models of disability may make a decisive difference in protecting disabled persons from stigma. The medical model today dominates excluding other useful approaches to disability. Stigma originating from the social model of disability or other alternative models of disability (eg ‘genetic models’)—not all of which protected by legislation—remain a risk to people with disabilities.108 ibid para 43. 103 ibid para 45. ibid paras 40 and 42. 104 See eg ‘Communication of the Commission on Equality of Opportunity for People with Disabilities of 30 July 1996’ COM (96) 406 final, and the ‘Equal opportunities for people with disabilities: a European Action Plan’ COM (2003) 650 final 4; see also ‘Resolution of the Council and of the Representatives of the Governments of the Member States meeting within the Council of 20 December 1996 on equality of opportunity for people with disabilities’ OJ C 12 (13 January 1997) 1. 105 See eg CRPD Committee, ‘Concluding Observations on the Initial Report of Peru’ UN Doc CRPD/C/ PER/CO/1 (20 April 2012). 106 Sonia Le Bris, ‘Give me your DNA, and I’ll Tell Who You Are . . . or Who You Will Become: Questions Surrounding the Use of Genetic Information in Europe’ (2001) 2 Isuma: Canadian Journal of Policy Research 90. 107 Gregor Wolbring, ‘A Disability Right Approach to Genetic Discrimination’ in Judit Sandor (ed), Society and Genetic Information (Central European University Press 2003) 161–86. 108 eg see Jackie Leach Scully, ‘Disability: Stigma and Discrimination’, in David N Cooper (ed), Encyclopaedia of the Human Genome (Nature Publishing Group 2012). 101 102
pedersen and ferretti
944
Statistics and Data Collection
In the end, therefore, the minimal conception of disability adopted under EU law arguably appears misaligned with the collection of data required under the CRPD, generating a degree of uncertainty as regards the appropriate safeguards to be employed under data protection legislation.
5. Paragraph 1(b): ‘internationally accepted norms’ It is clear from the CRPD travaux préparatoires that one particular concern regarding a treaty provision on statistics and data collection was the risk of misuse of the information.109 In order to counter this risk the collection and use of data must be in compliance with internationally accepted norms. This includes a reference to general safeguards, international standards and ethical principles of statistics, but without listing all the elements involved. The UN Statistics Division developed a briefing note on the collection and dissemination of disability statistics for the Working Group of the Ad Hoc Committee, as part of negotiating the draft treaty.110 The briefing note refers to the UN Fundamental Principles of Official Statistics.111 The principles entail that individual data collected by statistical agencies for statistical compilation, whether referring to natural or legal persons, are to be strictly confidential and used exclusively for statistical purposes.112 The general safeguards, international standards and ethical principles of statistics referred to in article 31 can also be found in the UN Principles Governing International Statistical Activities.113 These principles likewise require that individual data concerning natural persons and legal entities, or small aggregates that are subject to national confidentiality rules, are to be kept strictly confidential and to be used exclusively for statistical purposes or for purposes mandated by legislation.114 It also requires that erroneous interpretation and misuse of statistics be immediately and appropriately addressed.115
6. Paragraph 2 6.1 ‘disaggregated’ The obligation to disaggregate the data collected according to article 31 is essential for making statistics and research data a valuable tool to give effect to and monitor the implementation of the CRPD in member states.
109 See ‘Report of the third session of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ UN Doc A/AC 265/2004/5 (9 June 2004) fn 23. 110 UN Department of Economic and Social Affairs, Statistics Division, Demographic and Social Statistics Branch, ‘Briefing Note on the Collection and Dissemination of Disability Statistics’ (30 August 2004), available at: . 111 The UN Fundamental Principles of Official Statistics as adopted by the Statistical Commission at its forty-fourth session in 2013, available at: . 112 ibid principle 6. 113 The UN Principles Governing International Statistical Activities as adopted by the Committee for the Coordination of Statistical Activities at the 23rd Session on 3 March 2014, available at: . 114 115 ibid principle 6. ibid principle 7.
pedersen and ferretti
Article 31
945
To disaggregate in statistics is to break observations down into categories that are more detailed. In the human rights-based approach to data the purpose of disaggregation is to reveal underlying discrimination recognized in international human rights law, such as sex, age, ethnicity, and more.116 An example of disaggregation of human rights data for equality and discrimination analysis is provided by the UN-OHCHR in a guide on measurement and implementation of human rights obligations in general.117 Here ‘levels of disaggregation . . . may be considered for school enrolment in assessing the realization of the right to education and the right to non-discrimination and equality’.118 The aggregated data on the school enrolment rate may be further broken down into sex (enrolment ration for boys/ girls), geography (eg rual/urban), income (income quintiles), type of school (public/private) or other target groups (eg ethnic or religious groups), as shown in figure 31.2. The 2009 Reporting Guidelines specified that states parties should report on the statistical data on the realization of each CRPD right, ‘disaggregated by sex, age, type of disability (physical, sensory, intellectual and mental), ethnic origin, urban/rural population and other relevant categories, on an annual comparative basis over the past four
Enrolment ratio for girls
Enrolment ratio for boys Disaggregation by sex
Enrolment ratio by income quintile Disaggregation by income/type of school
Enrolment ratio by province SCHOOL ENROLMENT RATIO
Enrolment ratio by public/private school
Disaggregation by geography Enrolment ratio by rural/urban area
Disaggregation by other target groups Enrolment ratio for children of linguistic minorities, migrant families, with disabilities, etc.
Enrolment ratio by ethnic, religious, age group, etc.
Figure 31.2 Disaggregation of data for equality and discrimination analysis.119
116 See OHCHR, ‘A Human Rights-Based Approach to Data’ (OHCHR 2016) 6, available at: . 117 OHCHR, ‘Human Rights Indicators: A Guide to Measurement and Implementation’ (UN-ONCHR 2012). 118 119 ibid 129. ibid.
pedersen and ferretti
946
Statistics and Data Collection
Table 31.1 Average household income in China by disability status and urban/rural area (in Chinese Yuan). 25000 20000 15000 10000 5000 No person with a disability
With one person with a disability Rural
With two or more persons with a disability
Urban
Source: Loyalka et al. (2014).
years’.120 It also provided that states parties should report on ‘disaggregated and comparative statistical data on the effectiveness of specific anti-discrimination measures and the progress achieved towards ensuring equal realization of each CRPD right, including a gender and age-based perspective’.121 The 2016 Reporting Guidelines are not equally specific on this issue and request states parties to provide information on all articles of the Convention disaggregated by sex, age and barriers, ethnic origin, urban/rural population, and other relevant categories.122 It is worth noting that this list contained in the Reporting Guidelines is open-ended, and the examples provided are therefore not intended to be exhaustive. Data disaggregated on the basis of all relevant categories ensures that at every stage of policy planning and implementation, as well as in the monitoring of these policies, no one is excluded.123 See figure 31.1 and table 31.1 showing examples of how to disaggregate for disability taken from two different national statistics.124 Table 31.1 shows the relation between average household income in China, as disaggregated for disability status and urban-rural categories. It clearly depicts the negative effect on household income of having one or more person with disability at home. Table 31.2 shows poverty rates in Vietnam disaggregated for disability status, sex, and age, and shows that ‘disability-related expenses for medical care, transportation, assistive devices, and personal assistance mean that people with and without disabilities can have different standards of living at the same income level.’125 120 ‘Guidelines on Treaty-specific Document to be Submitted by States Parties under Article 35, paragraph 1 of the Convention on the Rights of Persons with Disabilities’ s A 3 2(h) UN Doc CRPD/C/2/3 (18 November 2009). 121 ibid section B.5. 122 ‘Guidelines on Periodic Reporting to the CRPD Committee’ (n 29) para 2. 123 CRPD Rules of Procedure, Annex, ‘Guidelines on Independent Monitoring Frameworks and their participation in the work of the Committee’ para 37(f ). 124 Both examples from UNESCAP, ‘Disability at a Glance 2015—Strengthening Employment Prospects for Persons with Disabilities in Asia and the Pacific (UNESCAP 2015) 10. 125 ibid.
pedersen and ferretti
Article 31
947
Table 31.2 Poverty rates in Vietnam by disability status. sex and age (%) BASED ON NATIONAL POVERTY LINE, UNADJUSTED FOR EXTRA COSTS PERSONS WITHOUT DISABILITIES
Sex
Age group
All Male Female 5–18 19–40 41–62 63+
15.1 14.6 15.6 19.3 15.1 9.9 14.5
PERSONS WITH DISABILITIES
17.2 17.5 16.9 31.1 24.7 11.9 17.0
PERSONS WITH DISABILITIES, BASED ON NATIONAL POVERTY LINE, ADJUSTED FOR COSTS OF DISABILITY 22.3 22.6 22.1 36.2 31.4 15.3 22.8
Source: D Mont and N N Cuong, Disability and Poverty in Vietnam, The World Bank Economic Review (2011) 25 2.
So far, the UN Development Program (UNDP) has not applied disaggregation practices in respect of disability status. This was also true for the Millennium Development Goals (MDG) framework.126 However, throughout the ongoing discussions on how a post-2015 human rights approach to data should look like, it has been ‘recognized as a key cross-cutting issue that (inequality) was neglected in the Millennium Development Goals (MDGs)—which came to be operationalized through a focus on average levels of achievement across eight pressing development areas . . .’ and that the MDGs ‘. . . overlooked the way in which these overlapping inequalities constrain the life chances of excluded groups and reinforce their social exclusion’.127 Thus, the UN Secretary-General’s High-Level Panel Of Eminent Persons on the Post-2015 Development Agenda published a report containing suggestions on transformative shifts in the development agenda. One of those was titled ‘leaving no one behind’, meaning that hunger and extreme poverty in all its forms should be eradicated. As part of this ambition, they acknowledged that ‘to be sure that our actions are helping not just the largest number of people, but the neediest and most vulnerable, we will need new ways of measuring success’.128 As a result, the 2030 Sustainable Development Goals (SGD) adopted by the UN General Assembly in 2015129 ensured that disaggregated data address all vulnerable groups such as children, youth, persons with disabilities, people living with HIV, older persons, indigenous peoples, refugees, internally displaced persons, and migrants.130 Evidently, a 126 See The Millennium Development Goals Report (UN 2015), available at: . 127 Claire Melamed and Emma Samman, ‘Equity, Inequality and Human Development in a Post-2016 Framework’ (UNDP February 2013) 1, available at: . 128 See UN, ‘A New Global Partnership: Eradicate Poverty and Transform Economies through Sustainable Development’ (UN 2013) 7 available at: . 129 UNGA Res 70/1 (25 September 2015), paras 4 a, 10.2, 17.18, but specifically 74 g. 130 See .
pedersen and ferretti
948
Statistics and Data Collection
process towards disaggregating data on disability is underway, however slowly, and is still to be translated into concrete data sources allowing for longitudinal comparative studies.
6.2 ‘assess the implementation’ Article 31(2) CRPD provides that data can be used to ‘assess the implementation of states parties’ obligations under the CRPD and to identify and address the barriers faced by persons with disabilities in exercising their rights’. While paragraph 1 focuses on the obligations of states, paragraph 2 seems to be focusing on the monitoring of obligations. Nevertheless, the two paragraphs are interrelated, given that the work of the monitoring bodies in assessing implementation through the use of statistics and research data depends in large on the quality of the data collected by states parties. The data collected must therefore—necessarily—support and add value to the task of the monitoring bodies in ‘assessing the implementation’ of the CRPD. In that regard, there is widespread agreement on the potential of statistical indicators in the effective monitoring and promotion of human rights.131 Indicators can be used as a valuable tool to assess state compliance with international human rights.132 However, no set of human rights indicators has ever been widely applied internationally. In addition, much of the data collected by states parties is not disaggregated according to disability.133 A consistent measurement of disability has also been identified as a challenge because of the differing models and different cultural interpretations of disability that exist at national, regional, and international levels.134 This lack of consistency poses further difficulties in terms of identifying and substantiating violations of the CRPD. The OHCHR has produced a generic guidance on human rights indicators as mentioned above.135 It defines human rights indicators as ‘specific information on the state or condition of an object, event, activity or outcome that can be related to human rights norms and standards; that addresses and reflects human rights principles and concerns; and that can be used to assess and monitor the promotion and implementation of human rights’.136 The guidance from OHCHR does not seek to prepare a common list of 131 See eg OHCHR, ‘Human Rights Indicators—A Guide to Measurement and Implementation’ (HR/ PUB/12/5 2012); The Committee on the Rights of the Childs General Comment No 5 (2003) on General Measures of Implementation of the Convention on the Rights of the Child UN Doc CRC/GC/2003/5 (27 November 2003) Arts 4, 42, and 44 para 6; Todd Landman, ‘Measuring Human Rights: Principle, Practice and Policy’ (2004) 26 HRQ 906, 909–10; Bård A Andreassen and Hans-Otto Sano, ‘What’s the Goal? What’s the Purpose? Observations on Human Rights Impact Assessment’ (2007) 11 International Journal of Human Rights 275, 275–77; Judith V Welling, ‘International Indicators and Economic, Social, and Cultural Rights’ (2008) 30 HRQ 940; Eilionóir Flynn, From Rhetoric to Action: Implementing the UN Convention on the Rights of Persons with Disabilities (CUP 2011) 273; Gauthier de Beco, ‘Human Rights Indicators: From Theoretical Debate to Practical Application’ (2013) 5 Journal of Human Rights Practice 380; Anna Lawson and Mark Priestley, ‘Potential, Principle and Pragmatism in Concurrent Multinational Monitoring: Disability Rights in the European Union’ (2013) 17 International Journal of Human Rights 740. 132 Gauthier de Beco, ‘Human Rights Indicators for Assessing State Compliance with International Human Rights’ (2008) 77 Nordic JIL 23, 23–25. 133 See the comments to Art 31(1). 134 ibid, see also eg Andrea Broderick, ‘Report on the 2013 Work Forum on the Implementation of the UN CRPD in the EU, Overview of the discussions which took place at the fourth annual Work Forum on the implementation of the CRPD organized by the European Commission in Brussels on 24 and 25 October 2013’ (European Commission 2013), available at: . 135 OHCHR, ‘Human Rights Indicators: A Guide to Measurement and Implementation’ (HR/PUB/12/5 2012). 136 ibid 16.
pedersen and ferretti
Article 31
949
indicators applicable in all countries, nor does it intend to create a framework for cross- country comparison of the realization of human rights. On the contrary, its purpose is only to facilitate the identification of contextually meaningful indicators.137 In keeping with article 31 CRPD, there is a need for indicators that can facilitate cross-national comparison. To this end, a number of useful approaches have emerged or are under development. The projects, carried out at international, regional, and national levels, have focused on both structural, process and outcome indicators. A range of these attempts are described below at the end of this chapter.
7. Paragraph 3 7.1 ‘Dissemination’ and ‘Accessibility’ The obligations of states parties under article 31 CRPD are not limited to the collection of statistics and research data, but also entail the responsibility for the dissemination and accessibility of the data collected. The CRPD Committee has also stressed the need for accessible data in several concluding observations.138 Making statistics and research data universally available is of course paramount, not least in light of the human rights principles of participation and inclusion,139 which are also explicitly stated as general principles under the CRPD.
7.2 Indicators as a Tool to Implement and Monitor the CRPD Attempts at national, regional, and international level have been made to structure research questions and key disability indicators in order to identify any gaps that might exist in implementing and monitoring the CRPD. At the international level, the Washington Group on Disability Statistics (WG) has worked to improve the quality and international comparability of disability measures on a wider scale.140 The WG is a voluntary group consisting of representatives of national statistical offices from all over the world, international organizations and non-government organizations, including international disability organizations. The main objective of the WG is to facilitate international cooperation in the area of health statistics with the aim to provide basic necessary information on disability which is comparable throughout the world.141 The Washington Group on Disability Statistics has developed two sets of questions on functioning that address the issue of assessing equality of opportunity.142 The first—short set of disability measures—is suitable for use in censuses, sample-based national surveys, or ibid 33. CRPD Committee, ‘Concluding Observations on the Initial Report of the Republic of Korea’ UN Doc CRPD/C/KOR/CO/1 (29 October 2014) para 60; CRPD Committee, ‘Concluding Observations on the Initial Report of China’ UN Doc CRPD/C/CHN/CO/1 15 (October 2012) para 24. 139 The Human Rights Based Approach to Development Cooperation Towards a Common Understanding Among UN Agencies (2003), available at: . 140 See . Together with UNICEF, the WG is producing a similar set of disability measures intended for children with disabilities. 141 See further the purpose of and organization of the Washington Group on Disability Statistics, available at: . 142 See Washington Group on Disability Statistics, ‘Statement of Rationale for the Washington Group General Measure on Disability’, available at: . 137 138
pedersen and ferretti
Source: Question Development Matrix .
Figure 31.3 Washington Group/Budapest Initiative/UNESCEF Question Development Matrix
952
Statistics and Data Collection
other statistical formats. The questions address difficulties with certain activities because of different health problems.143 The questions intend to capture the majority, but not all persons with limitation in basic activity functioning in any one nation, and represent the most commonly occurring limitations within any country. Although this short set of questions provides the possibility for cross-country comparison, the set of questions arguably does not capture persons with psychosocial disabilities adequately. The second— extended set of disability measures—is suitable as a component in population surveys or as a supplement to specialty surveys.144 The ICF has been used by the WG as the basic framework for the development of all questions in both sets. The methodology has been accepted and acknowledged by the United Nations Statistical Commission as a valuable tool to improve the quality, availability and international comparability of disability statistics145 and the available testing of the short set of questions has shown that they produce internationally comparable data.146 The World Health Organization and the World Bank have also developed a Model Disability Survey (MDS), which is a general population survey that provides detailed and nuanced information on the lives of people with disability and which allows for direct comparison between groups with differing levels and profiles of disability, including comparison to people without disability.147 Likewise, The Essl Foundation, together with the World Future Council and the European Foundation Centre, has completed a project on social indicators to measure implementation of the CRPD and to assess the current situation regarding implementation across the world.148 At regional level, the United Nations Economic and Social Commission for Asia and the Pacific (UNESCAP) has developed the Incheon Strategy to ‘Make the Right Real’ for Persons with Disabilities in Asia and the Pacific, a compilation of sixty indicators.149 In collaboration with the European Commission and the Academic Network of European Disability Experts (ANED), the European Agency for Fundamental Rights (FRA) has also developed twenty-eight indicators to assess the political participation of persons with disabilities in the EU.150 In June 2014 FRA began work on the development of indicators to measure implementation of article 19 CRPD.151 At the national level, there have been only few attempts to mainstream disability into statistics and data collection, resulting in a lack of adequate data to effectively support the
143 The full wording of the short set of questions, available at: . 144 The full wording of the long set of questions, available at: . 145 See Statistical Commission’s ‘Report on the forty-fifth session’ (4–7 March 2014) Decision 45/109 (E/ 2014/24-E/CN 3/2014/35). 146 Jennifer H Madans, Mitchell E Loeb, Barbara M Altman, ‘Measuring Disability and Monitoring the UN Convention on the Rights of Persons with Disabilities: The Work of the Washington Group on Disability Statistics’ (2011) 4 BMC Public Health 4. 147 148 See . See . 149 See (accessed 22 February 2015). 150 See . 151 See . Prior to these initiatives a qualitative and quantitative rights-based set of comparative indicators, consistent with the CRPD, was proposed by a working group including, among others, representatives of ANED, Disabled Peoples’ International, the WHO, and Eurostat. These were framed as ‘Indicators of Disability Equality in Europe’ (IDEE).
pedersen and ferretti
Article 31
953
monitoring processes. At present, the lack of data poses challenges for National Human Rights Institutions (NHRIs) and Disabled People’s Organisations (DPOs) in substantiating claims of violations of the rights of persons with disabilities.152 Both the UN High-Level Meeting of the General Assembly on Disability and Development153 and the UN High-Level Panel of Eminent Persons on the Post-2015 Development Agenda154 as well as United Nations Department of Economic and Social Affairs call for radical improvements in disability data collection, analysis, and monitoring. The UN Department of Economic and Social Affairs concluded that ‘it is evident that data collection and data dissemination concerning disability statistics at the national and international level are incomplete and in need of further strengthening’.155 Many of the projects on indicators tend to focus on one or two specific provisions in the CRPD. Furthermore, they often consist of numerous questions on each of the rights that the project aims to elucidate. Inspired by the British Equality and Human Rights Commission’s equality measurement framework,156 the Danish Institute for Human Rights (DIHR) has proposed a different approach at national level.157 The goal of the project was to develop a set of ten statistical outcome indicators that could provide an overview of Denmark’s compliance with the CRPD. The project is presently limited to Denmark, but the long-term goal is to achieve regional and international recognition of the Gold Indicators so that they can be used as a basis for comparison among countries that have ratified the CRPD. A quite unique and comprehensive project, that works with comparative indicators as well, is the ‘Disability Online Tool of the [EU] Commission’ (DOTCOM).158 DOTCOM gives an unprecedented level of access to knowledge about disability policies in European countries. The database contains descriptive data on relevant laws, policies and programmes, for each country and for the EU as a whole, against forty-four items selected as relevant to the implementation of the CRPD. DOTCOM is nevertheless more a monitoring tool for the European Disability Strategy than for the CRPD in its entirety.159 The different projects that have emerged in recent years are more or less in keeping with article 31 CRPD. However, in the absence of guidelines from the CRPD Committee on 152 See Andrea Broderick, ‘Report on the 2013 Work Forum on the Implementation of the UN CRPD in the EU, Overview of the discussions which took place at the fourth annual Work Forum on the implementation of the CRPD organised by the European Commission in Brussels on 24 and 25 October 2013’ (European Commission 2013), available at: ; see also Bickenbach (n 40) 5; de Beco (n 132) 23–49. 153 Outcome Document of the High-Level Meeting of the General Assembly on the Realization of the Millennium Development Goals and other Internationally Agreed Development Goals for Persons with Disabilities: The Way Forward, A Disability-inclusive Development Agenda Towards 2015 and Beyond’ UN Doc A/68/L 1 (17 September 2013). 154 ‘A New Global Partnership: Eradicate Poverty and Transform Economies Through Sustainable Development—The Report of the High-Level Panel of Eminent Persons on the Post-2015 Development Agenda’ UN (2013), available at: . 155 United Nations Department of Economic and Social Affairs, ‘Strategic Action towards Inclusive Development: Disability, Human Rights and Statistics, United Nations’ (2010), available at: . 156 See . 157 See . 158 First published in May 2012, available at: . 159 See also Lawson and Priestley (n 47) 750–52.
pedersen and ferretti
954
Statistics and Data Collection
how to measure implementation of the Convention, the data collected at national, regional and international level persist to reveal the implications of the differing models and different cultural interpretations of disability at all levels. Nevertheless, some of the projects seek specifically to strengthen the focus on collecting robust, consistent and comparable data in line with article 31. To this end, ensuring that the indicators can be measured against the CRPD definition of disability is imperative if the disability statistics are to reliably assess the implementation of the CRPD. Other key focus areas of indicators in line with article 31 could be the possibility of drawing international comparisons; relevance to CRPD rights and to persons with disabilities and duty bearers; ensuring that data is updated over time in order to track change; continual assessment of the reliability and precision of the indicator; ensuring the ability to further disaggregate data. The CRPD Committee has acknowledged the initiatives taken at the international, regional and national levels to develop indicators for measuring the implementation of the Convention but has also observed that ‘data on the situation of persons with disabilities has not been systematically and regularly collected in national statistics systems, and baselines, indicators and benchmarks have not been regularly used or reflected in data collection and analysis at the national level’.160
160 CRPD Rules of Procedure, UN Doc CRPD/C/1/Rev 1 (10 October 2016), Annex, Guidelines on Independent Monitoring Frameworks and their participation in the work of the Committee paras 34 and 35.
pedersen and ferretti
Article 32 International Cooperation . States Parties recognize the importance of 1 international cooperation and its promotion, in support of national efforts for the realization of the purpose and objectives of the present Convention, and will undertake appropriate and effective measures in this regard, between and among States and, as appropriate, in partnership with relevant international and regional organizations and civil society, in particular organizations of persons with disabilities. Such measures could include, inter alia:
(b) Facilitating and supporting capacity- building, including through the exchange and sharing of information, experiences, training programmes and best practices; (c) Facilitating cooperation in research and access to scientific and technical knowledge; (d) Providing, as appropriate, technical and economic assistance, including by facilitating access to and sharing of accessible and assistive technologies, and through the transfer of technologies.
(a) Ensuring that international cooperation, including international development programmes, is inclusive of and accessible to persons with disabilities;
. The provisions of this article are without 2 prejudice to the obligations of each State Party to fulfil its obligations under the present Convention.
1. Introduction and Background 2. Travaux Préparatoires 3. Paragraph 1: Chapeau 3.1 ‘[s]uch measures could include, inter alia’ 3.2 Paragraph 1(a) 3.3 Paragraph 1(b) 3.4 Paragraph 1(c) 3.5 Paragraph 1(d) 4. Paragraph 2 4.1 The Interpretive Arc of Article 32 4.2 CRPD Committee Practice in Overseeing the Implementation of Article 32 4.3 Whither Disability Inclusion as a Necessary Element of Sustainable Development?
955 958 963 965 965 967 970 971 971 974 975 976
1. Introduction and Background The provision on international cooperation in the CRPD sprang from framework conventions in the international criminal and environmental law spheres, where such provisions are ubiquitous, rather than from prior human rights treaty practice.1 Article 32 was 1 See eg Convention on Biological Diversity, adopted 5 June 1992 UNTS 1993 (entered into force, 29 December 1993), available at: .
lord and stein
956
International Cooperation
thus a highly contentious text to negotiate due to the far more limited meaning ascribed to the term ‘international cooperation’ in other international human rights instruments.2 That being said, the international human rights system is highly contingent on the undertaking at the national and regional levels of international cooperation activities, including technical assistance, by numerous UN agencies, states, and development entities. Indeed, the UN Charter includes among its purposes the achievement of international cooperation in solving problems of an economic, social, cultural or humanitarian nature.3 Moreover, prior to the CRPD numerous disability-specific non-binding instruments reflected a strong embrace of development and international cooperation, owing in part to their elaboration and promotion under the auspices of the UN Department of Economic and Social Affairs (UN DESA), with its vast experience in the field because of its role as a lead agency for the assessment of progress towards the Millennium Development Goals (MDGs).4 This is in contrast to the more traditional human rights provenance of the Office of the High Commissioner for Human Rights (OHCHR).5 The adoption of soft law instruments helped to situate disability within the development realm while also highlighting global human rights issues for persons with disabilities. Notably, the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (Standard Rules) account for the disability dimension in technical and economic cooperation and reaffirm the principle of inclusive policies, plans, and activities, specifying that ‘[t]he needs and concerns of persons with disabilities should be incorporated into general development plans and not be treated separately’.6 Further, rule 21 of the Standard Rules specifically addresses the responsibility of states in the realm of technical and economic cooperation, and thus may be regarded as an important antecedent to CRPD article 32.7 Likewise, rule 22 specifies the need for states to participate actively in international cooperation concerning policies for the equalization of opportunities for persons with disabilities.8 The Standard Rules served to inform State policies and practices and, in some instances, framed bilateral donor policies on disability.9 Incorporating international cooperation under the Standard Rules and other soft laws as an element for advancing equality on behalf of persons with disabilities stands in sharp 2 Michael Ashley Stein and Janet E Lord, ‘Monitoring the Committee on the Rights of Persons with Disabilities: Innovations, Lost Opportunities, and Future Potential’ (2010) 32 HRQ 689. The reference to international cooperation appearing in the Covenant on Economic, Social and Cultural Rights, for instance, appears in a preambular paragraph regarding its role in promoting improvement of living conditions for all children; in Art 2(1) ICESCR, in the context of implementing economic, social, and cultural rights in a spare reference to international assistance and cooperation, and in Art 11(1) and (2), concerning implementation of the right to food and recognizing the benefits of international cooperation in the scientific and cultural fields in Art 15(4); see CESCR, ‘General Comment No 5: Persons with Disabilities’ UN Doc E/C 12/1994/13 (14 December 1994). 3 Art 1(3) 1945 Charter of the United Nations. 4 Available at: . 5 Specifically, prior to the CRPD’s adoption, the UN Disability Programme was housed within UN DESA. Following the adoption of the CRPD, UN DESA serves as the CRPD Secretariat (including servicing the annual Conference of States Parties), while OHCHR services the Committee on the Rights of Persons with Disabilities. 6 The Standard Rules on the Equalization of Opportunities for Persons with Disabilities, UNGA Res 48/96 (20 December 1993) Rule 14(2) [Standard Rules]. 7 8 Standard Rules, rule 21. Standard Rules, rule 22. 9 Thus, the Standard Rules did serve as an impetus for disability inclusion policy making in international development, as the specific reference to the Standards Rules in the original Italian Cooperation disability policy illustrates—see Janet E Lord et al, ‘Disability Inclusive Development: A Review of Existing Policies and Practices’ World Bank, SP Discussion Paper 1003 (2009).
lord and stein
Article 32
957
contrast to the circumscribed role of international cooperation in legally binding human rights instruments.10 In the Convention on the Rights of the Child (CRC), for example, ‘international cooperation’ is referenced in relation to implementing economic, social and cultural rights.11 Article 4 provides that: ‘States Parties shall undertake such measures to the maximum extent of their available resources and, where needed, within the framework of international cooperation.’12 This more limiting notion was strongly embraced by the leading providers of development assistance during the course of the CRPD negotiations. Canada, for instance, emphasized that language on international cooperation should be based on existing human rights instruments such as article 4 of CRC cited above.13 This narrow focus was also the firmly held position of the EU.14 A divergent view of the role of international cooperation prevails in international environmental law where bilateral and multilateral collaboration is understood as a necessary pre-condition to environmental protection by developing countries.15 Within the realm of international environmental treaties it is commonplace for the provision of technical and financial assistance to be linked to the implementation of treaty obligations. For example, under the Framework Convention on Climate Change, the provision of assistance is made a condition for implementation by developing countries in article 4(7), where: The extent to which developing country Parties will effectively implement their commitments under the Convention will depend on the effective implementation by developed country Parties of their commitments under the Convention related to financial resources and transfer of technology and will take fully into account that economic and social development and poverty eradication are the first and overriding priorities of the developing country Parties.16
Strikingly, and in stark contrast, human rights law views the conditionality of international cooperation (and inter alia the receipt of donor assistance) as inimical to the notion of human rights responsibility, and as the antithesis of the traditional and intractable axiom that human rights are ultimately a matter of domestic law.17 Resistance by developed countries, in particular the United States, to international cooperation provisions in human rights treaties is tied to their long lasting objections to the 1970s era campaign within the UN for a new ‘New International Economic Order’ (NIEO) whose aim among developing countries was to advance independence in all its forms by laying claim to a right of peoples and nations to economic self-determination, development, and control over their own natural resources.18 The NIEO campaign also advocated against interference in a country’s economic affairs and included support for positive obligations, 10 For further discussion, see Marianne Schulze, A Handbook on the Human Rights of Persons with Disabilities: Understanding The UN Convention on the Rights of Persons with Disabilities (2009), available at: