Research Handbook on Disability Policy 1800373643, 9781800373648

Table of contents :
Front Matter
Copyright
Contents
Contributors
Acknowledgements
Introduction to disability policy through a human rights lens
PART I HUMAN RIGHTS
1. Narrative 1: Mia’s piece - Candice, “Defying Gravity” and I
2. Knowledge production and human rights enhancement: the role and potentialities of emancipatory disability research
3. A journey together - co-creation and experiential knowledge of people with intellectual disabilities in social policy
4. Accessibility policies in Brazil: negotiating collective accessthrough the principles of Disability Justicefor a Brazilian Center for Disability Studies
5. Narrative 2: Evil: disabled villains in media
6. Developing a participatory indicators-based framework for monitoring disability rights
7. Disabled person-led monitoring of the UNCRPD in Aotearoa New Zealand: maximising the potential of civil society in the implementation of Article 33.3
8. Narrative 3: If my childhood can have CRPD’s company
9. The right of people with disabilities to participate in cultural life: is Cinderella going to the ball?
10. When the state does not care: Disability rights in a context of multi-layered crises, instability and disablism
11. Decentralization, empowerment and grassroots engagement: advocacy organizations navigating the implementation of codified disability rights in Malawi
12. From enabling access to enabling rights: Singapore’s practical approach to disability policy
13. An accessible public transit system as a right for people with disabilities in Taiwan
14. Narrative 4: The effect of disability policy on lives
15. The EU framework of people with disabilities’ rights – an intertemporal equilibrium between regulatory and policy paradigms
16. The influence of disability models in Indonesian past and present: disability rights law-making and policy-making
17. The Accessible Canada Act: a political expression of disability rights as human rights
18. Narrative 5: Locked-in, locked-down: lived experience of a non-speaker
19. From international standard to national practice: the role of national disability institutions in making the Convention on the Rights of Persons with Disabilities a reality in South and Central America
20. Narrative 6: Affection and emancipation: the friendship of four disabled women
21. Decolonizing disability rights policies through indigenous theorization: the case of Zimbabwe
PART II WELFARE
22. Narrative 7: Disabled - AS1428.1 2021 and all that jazz
23. From care and welfare to independent living? Interpreting and assessing the human right to live independently and be included in the community
24. Sexuality and relationships: informing rights-based policyand practice through research with and by people with intellectual disabilityin Australia and Aotearoa New Zealand
25. Narrative 8: A quiet genocide: the power of segregation
26. Engaged advocacy: a framework for inclusion of people from refugeeand asylum-seekingbackgrounds in disability policy
27. Narrative 9: My work advocating for the Syrian community
28. The Australian National Disability Insurance Scheme and disability identity: how welfare policy impacts narratives of disability
29. Tracing the welfare–rights connection in American disability policymaking
30. Questioning the dominant welfare discourse on personalization and autonomyembodied in personal budget policy
31. Negotiating rights in education: an examination of U.S. education disability policy
32. Narrative 10: My education story
33. Preventing catastrophe: the welfare state and disaster riskfor people with disabilities
34. Strategic human rights-based policy reforms for making Australian universities equally accessible to students, staff, and faculty who are Indigenous people with disability
35. Narrative 11: The “lucky” one
36. Exploring equality and non-discriminationof disabled studentsin policyand practicein public universities in Uganda
37. Participation in personalization of minority cultural groups: lived experience and diversity in the UK
38. Materializing change: exploring human rights-based approaches to improve built environment accessibilityat the neighbourhood scale
39. Narrative 12: The draining expectations placed upon marginalised groups
40. Alternative community living practices in Taiwan: rethinking de-institutionalizationand the human rightsmodel
41. Mainstreaming disability in Indonesian development: rethinking disability citizenship to move beyond a welfare focus
42. Housing deficit for people with disabilities in a radically neoliberal country: Chile’s case
43. Inclusion of students with visual impairmentin Indian higher education: a critical inquiry from a human rightsperspective
PART III HEALTH
44. Narrative 13: Voice, choice and a better outcome
45. Making disability known: medicalisation of disability and the development of the International Classification of Functioning
46. Disabilities, evidence-making, and quality of life: the three core human rights principles framework
47. Establishing a human rights-based approach in healthcare: a UK example moving beyond policy and into private spaces
48. Narrative 14: Technology in the lives of people with disabilities
49. Disability and human rights: the right to benefit from scientific progress
50. Chasing a runaway train: disability policy grapples with accelerated prenatal genetic technologies
51. Care robots as enabling assistive technology: implications for quality of lifeand disability policy
52. Narrative 15: Disability rights and robotics: being there without being there
53. ‘It’s about quality of life rather than length of life’: using and refusing policy discourse in the lives of children labelled with life-limiting and/or life-threatening conditions
54. Inclusive sexuality education: achieving sexual justice, sexual pleasureand sexual agency for women with disability
55. Narrative 16: In her lifetime
56. Pain management for palliative carepatients with disabilities: revisiting morphine prescription policies in developing contexts
PART IV ECONOMIC INCLUSION
57. Narrative 17: Supported or stuck? Disability employment policy for young people
58. Economics of inclusion
59. Heightism, hierarchies and human rights: how a normalcy of disability infringes on the rights of people with dwarfism
60. Post-school transition process in a pandemic: how can young people with disability be better supported?
61. The right to work “on an equal basis with others”: examining disability employment policies in Australia through the lens of a health and economic crisis
62. Narrative 18: Sanist wonderland
63. Does the CRPD matter? A comparison of sheltered workshop policies in Japan, Taiwan, and South Korea
64. Disability as an enabler of career success and inclusion
65. Narrative 19: I want a job
66. Social entrepreneurship between earning a living and emancipation: impact of microfinance on people with disabilities in Kenya
67. Advancing income security policy using universal design: the case of the Ontario Disability Support Programme in Ontario, Canada
68. Narrative 20: Living with a disability: what difference would a guaranteed livable income make?
69. A human rights-based approach to assistive technology provision in global policy
70. Conclusion on disability policy
Index

Citation preview

RESEARCH HANDBOOK ON DISABILITY POLICY

ELGAR HANDBOOKS IN SOCIAL POLICY AND WELFARE This exciting series provides a comprehensive overview of cutting edge research on Social Policy and Welfare, forming a definitive guide to the subject. The Handbooks present original contributions by leading authors, selected by an editor internationally recognised as a preeminent authority within the field. Titles in the series are truly international in their scope and coverage, and use a comparative approach to analyse key research themes. Equally useful as reference tools or high-level introductions to specific topics, methods and debates, these Handbooks will be a vital resource for academic researchers and postgraduate students. For a full list of Edward Elgar published titles, including the titles in this series, visit our website at www.e-elgar.com. ​ ​ ​

Research Handbook on Disability Policy Edited by

Sally Robinson College of Nursing and Health Sciences, Flinders University, Australia

Karen R. Fisher Social Policy Research Centre, UNSW Sydney, Australia

ELGAR HANDBOOKS IN SOCIAL POLICY AND WELFARE

Cheltenham, UK • Northampton, MA, USA

© The Editors and Contributors Severally 2023

Cover image: Detail shot of Unearth by Jackie Saunders., photo by P. Soteriou. 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, electronic, mechanical or photocopying, recording, or otherwise without the prior permission of the publisher. Published by Edward Elgar Publishing Limited The Lypiatts 15 Lansdown Road Cheltenham Glos GL50 2JA UK Edward Elgar Publishing, Inc. William Pratt House 9 Dewey Court Northampton Massachusetts 01060 USA A catalogue record for this book is available from the British Library Library of Congress Control Number: 2023935286 This book is available electronically in the Sociology, Social Policy and Education subject collection http://dx.doi.org/10.4337/9781800373655

ISBN 978 1 80037 364 8 (cased) ISBN 978 1 80037 365 5 (eBook)

EEP BoX

Contents

xi xxxiv

List of contributors Acknowledgements Introduction to disability policy through a human rights lens Karen R. Fisher and Sally Robinson PART I

1

HUMAN RIGHTS Sophie Mitra and Sally Robinson

1

Narrative 1: Mia’s piece – Candice, “Defying Gravity” and I Mia Boonen

2

Knowledge production and human rights enhancement: the role and potentialities of emancipatory disability research Mario Biggeri, Federico Ciani, Giampiero Griffo and Sunil Deepak

17

3

A journey together – co-creation and experiential knowledge of people with intellectual disabilities in social policy María Gómez-Carrillo de Castro

33

4

Accessibility policies in Brazil: negotiating collective access through the principles of Disability Justice for a Brazilian Center for Disability Studies Marivete Gesser and Anahí Guedes de Mello

5

Narrative 2: Evil: disabled villains in media Em Dewhurst

6

Developing a participatory indicators-based framework for monitoring disability rights Paula Campos Pinto and Maria Engrácia Cardim

7

Disabled person-led monitoring of the UNCRPD in Aotearoa New Zealand: maximising the potential of civil society in the implementation of Article 33.3 Robbie Francis Watene, Brigit Mirfin-Veitch and Umi Asaka

8

Narrative 3: If my childhood can have CRPD’s company Honglu Zhu

9

The right of people with disabilities to participate in cultural life: is Cinderella going to the ball? Delia Ferri and Ann Leahy v

15

49 65

67

85 100

102

vi  Research handbook on disability policy

10

When the state does not care: disability rights in a context of multi-layered crises, instability and disablism Grace Khawam and Supriya Akerkar

11

Decentralization, empowerment and grassroots engagement: advocacy organizations navigating the implementation of codified disability rights in Malawi Sarah I. Huque

118

135

12

From enabling access to enabling rights: Singapore’s practical approach to disability policy Daryl W.J. Yang, Kuansong Victor Zhuang, Gerard Goggin and Meng Ee Wong

13

An accessible public transit system as a right for people with disabilities in Taiwan Kuo-yu (Lisa) Wang and Pey-chun Pan

14

Narrative 4: The effect of disability policy on lives Chien-Ju Chou

15

The EU framework of people with disabilities’ rights – an intertemporal equilibrium between regulatory and policy paradigms Gabriel Amitsis and Fotini Marini

186

16

The influence of disability models in Indonesian past and present: disability rights law-making and policy-making Abi Marutama, Antoni Tsaputra and Lengga Pradipta

202

17

The Accessible Canada Act: a political expression of disability rights as human rights Michael J. Prince

217

18

Narrative 5: Locked-in, locked-down: lived experience of a non-speaker Tim Chan

19

From international standard to national practice: the role of national disability institutions in making the Convention on the Rights of Persons with Disabilities a reality in South and Central America Renata Anahí Bregaglio Lazarte, Paula Lucía Camino Morgado and Renato Antonio Constantino Caycho

20

Narrative 6: Affection and emancipation: the friendship of four disabled women Karla Garcia Luiz, Laureane Marília de Lima Costa, Mariana Lúcia Agnese Costa e Rosa and Thaís Becker Henriques Silveira

21

Decolonizing disability rights policies through indigenous theorization: the case of Zimbabwe Martin Musengi

151

166 183

233

234

251

256

Contents  vii

PART II

WELFARE Karen R. Fisher and Olivia Geehan

22

Narrative 7: Disabled Howl – AS1428.1 2021 and all that jazz Peter Raisbeck

23

From care and welfare to independent living? Interpreting and assessing the human right to live independently and be included in the community Yvette Maker

24

Sexuality and relationships: informing rights-based policy and practice through research with and by people with intellectual disability in Australia and Aotearoa New Zealand Patsie Frawley and Brigit Mirfin-Veitch

272

274

289

25

Narrative 8: A quiet genocide: the power of segregation Cindy Liu

303

26

Engaged advocacy: a framework for inclusion of people from refugee and asylum-seeking backgrounds in disability policy Maree Higgins, Mahmoud Murad, Kim Robinson, Angela Dew, Katherine Boydell, Fiona McKay, Joanne Watson, Mariano Coello, Louisa Smith, Kelley Johnson and Ruth Wells

27

Narrative 9: My work advocating for the Syrian community Mahmoud Murad, assisted by Miream Salameh and Maree Higgins, translated by Miream Salameh

28

The Australian National Disability Insurance Scheme and disability identity: how welfare policy impacts narratives of disability Tessa-May Zirnsak

29

Tracing the welfare–rights connection in American disability policymaking  David Pettinicchio

30

Questioning the dominant welfare discourse on personalization and autonomy embodied in personal budget policy Toon Benoot and Rudi Roose

361

31

Negotiating rights in education: an examination of U.S. education disability policy Catherine Kramarczuk Voulgarides

374

32

Narrative 10: My education story Alexander Elliott

33

Preventing catastrophe: the welfare state and disaster risk for people with disabilities Zachary A. Morris

305

322

330 346

387

389

viii  Research handbook on disability policy

34

Strategic human rights-based policy reforms for making Australian universities equally accessible to students, staff, and faculty who are Indigenous people with disability Sheelagh Daniels-Mayes, Paul Harpur and Michael Ashley Stein

402

35

Narrative 11: The “lucky” one Ayah Wehbe

418

36

Exploring equality and non-discrimination of disabled students in policy and practice in public universities in Uganda Paul Emong and Anica Zeyen

421

37

Participation in personalization of minority cultural groups: lived experience and diversity in the UK Martin Partridge, Mahuya Kanjilal and Elaine Arnull

437

38

Materializing change: exploring human rights-based approaches to improve built environment accessibility at the neighbourhood scale Mary Ann Jackson, Erin Wilson and Flavia Marcello

452

39

Narrative 12: The draining expectations placed upon marginalised groups Mac Zamani

40

Alternative community living practices in Taiwan: rethinking de-institutionalization and the human rights model  Heng-hao Chang and Yi-Chun Chou

470

41

Mainstreaming disability in Indonesian development: rethinking disability citizenship to move beyond a welfare focus Antoni Tsaputra and Eban Pollard

485

42

Housing deficit for people with disabilities in a radically neoliberal country: Chile’s case Francisca Valdebenito-Acosta, Julio Hasbún-Mancilla and Joao Acharan-Riffo

43

Inclusion of students with visual impairment in Indian higher education: a critical inquiry from a human rights perspective Aneesh Peter and Catherine Elisa John

469

501

517

PART III HEALTH Sally Robinson 44

Narrative 13: Voice, choice and a better outcome Raelene West

45

Making disability known: medicalisation of disability and the development of the International Classification of Functioning Jennifer Smith-Merry

536

539

Contents  ix

46

Disabilities, evidence-making and quality of life: the three core human rights principles framework Luciano Bottini Filho

551

47

Establishing a human rights-based approach in healthcare: a UK example moving beyond policy and into private spaces Eleanor Brown and Jo Ferrie

565

48

Narrative 14: Technology in the lives of people with disabilities Brooke Ellison

581

49

Disability and human rights: the right to benefit from scientific progress Anne M. Bryden, Jennifer French and Brian Gran

583

50

Chasing a runaway train: disability policy grapples with accelerated prenatal genetic technologies Kara B. Ayers and Monica C. Schneider

51

Care robots as enabling assistive technology: implications for quality of life and disability policy  Naonori Kodate, Hasheem Mannan, Sarah Donnelly, Yurie Maeda and Diarmuid O’Shea

52

Narrative 15: Disability rights and robotics: being there without being there Sophie Savage and Tillie Curran

53

‘It’s about quality of life rather than length of life’: using and refusing policy discourse in the lives of children labelled with life-limiting and/ or life-threatening conditions Katherine Runswick-Cole, Dan Goodley, Kirsty Liddiard and Sally Whitney

636

54

Inclusive sexuality education: achieving sexual justice, sexual pleasure and sexual agency for women with disability Denise Beckwith and Nicole Laurance

653

55

Narrative 16: In her lifetime Lee Tsourvakas

56

Pain management for palliative care patients with disabilities: revisiting morphine prescription policies in developing contexts Julieth Musengi and Martin Musengi

600

615

632

667

669

PART IV ECONOMIC INCLUSION Karen R. Fisher and Bella Bauer 57

Narrative 17: Supported or stuck? Disability employment policy for young people Sionainn Jans

684

x  Research handbook on disability policy

58

Economics of inclusion Daniel Mont

686

59

Heightism, hierarchies and human rights: how a normalcy of disability infringes on the rights of people with dwarfism Erin Pritchard

691

60

Post-school transition process in a pandemic: how can young people with disability be better supported? Helen Dickinson, Catherine Smith, Amy Marks and Jess Mitchell

706

61

The right to work “on an equal basis with others”: examining disability employment policies in Australia through the lens of a health and economic crisis Sue Olney and Alexandra Devine

721

62

Narrative 18: Sanist wonderland  Damian Mellifont

63

Does the CRPD matter? A comparison of sheltered workshop policies in Japan, Taiwan, and South Korea Yi-Chun Chou, Jun Nakagawa and Eun-Ju Yoo

64

Disability as an enabler of career success and inclusion Daniel Samosh, Mukta Kulkarni, Alecia Santuzzi and Brent Lyons

756

65

Narrative 19: I want a job Sadiel Albakri

772

66

Social entrepreneurship between earning a living and emancipation: impact of microfinance on people with disabilities in Kenya Yvonne Wechuli, Sellah Lusweti, Halimu Shauri and Elisabeth Wacker

773

67

Advancing income security policy using universal design: the case of the Ontario Disability Support Programme in Ontario, Canada Tracy Smith-Carrier

789

68

Narrative 20: Living with a disability: what difference would a guaranteed livable income make? Joe Foster

805

69

A human rights-based approach to assistive technology provision in global policy Catherine Holloway, Giulia Barbareschi, Oriol Valles Codina, Nora Colton, Arne Henning Eide, Zuleima Dafne Morgado-Ramirez, Jamie Danemayer, Rainer Kattel and Victoria Austin

70

Conclusion on disability policy Sally Robinson and Karen R. Fisher

Index

739

741

807

823 830

Contributors

Joao Acharan-Riffo is a political scientist from the Pontificia Universidad Católica de Chile with an MA in public policy at the Diego Portales University. He works as Research Director in Datavoz-Statcom, dedicated to consulting in public opinion studies. He has led consultancies for various public organisms, including Ministerio de Desarrollo Social y Familia and Ministerio de Vivienda y Urbanismo on issues associated with satisfaction with the benefits of the social protection subsystems, subjective well-being, quality of urban life, among others. Supriya Akerkar is the Director of the Centre for Development and Emergency Practice at Oxford Brookes University (OBU), UK. Her research is on social marginalization and inclusion, with a focus on the rights of people with disabilities, older people, women and excluded groups in emergency and development contexts. She has several publications assessing the potential of rights discourses and approaches. She is also a course leader for MA Development and Emergency Practice at OBU. She has an MA in Development Studies from the Institute of Social Studies, The Hague, and a PhD in the area of Disasters and Development, from Northumbria University, UK. Sadiel Albakri lives in Melbourne, Australia. He is a determined job hunter and enthusiastic about his future in work. Sadiel has been involved in youth advocacy in the past, and likes to speak up about things that are important to him. Gabriel Amitsis is an international lawyer and academic, Professor of Social Security Law in the Department of Business Administration (Social Policy Unit) and Director of the Social Administration Research Lab at the University of West Attica in Athens. Elaine Arnull is a Professor and Associate Dean, University of Wolverhampton, UK, and Director of the School of Society and Community, and Visiting Professor, Queensland University of Technology, Australia. Her work is international and collaborative and focuses on the margins around participation, justice, transgression and voice. She has authored books, journal articles and research monographs, and is a Fellow of the Higher Education Academy, qualified social worker and formerly a Probation Officer. Umi Asaka is a Junior Research Fellow at the Donald Beasley Institute where she is Project Coordinator for the Disabled Person-Led Monitoring of the United Nations Convention on the Rights of Persons with Disabilities as well as other disability rights research projects. Having lived experience of disability, cultural diversity and with a social work background, Umi is passionate about envisioning and working towards a society where no one is left behind, through research, activism and community work. Victoria Austin is co-founder and CEO of Global Disability Innovation Hub Community Interest Company, and an Honorary Senior Researcher at University College London. She leads AT2030, a global programme to test what works in getting AT to the people that need it around the world in 28 countries with 40 partners (including WHO, UNICEF and CHAI). She led the Paralympic Legacy Programme from the London 2012 Paralympic Games. Victoria’s xi

xii  Research handbook on disability policy research focuses on social development and disability investigating what enables active citizenship for disabled slum dwellers in Freetown, Sierra Leone. Kara B. Ayers, PhD, is an Associate Professor of Pediatrics and the Associate Director of the University of Cincinnati Center for Excellence in Developmental Disabilities at Cincinnati Children’s Hospital Medical Center. She leads the National Center for Disability, Equity, and Intersectionality and is co-founder of the Disabled Parenting Project. Dr Ayers’ interests include disability identity/culture, bioethics, community inclusion, and the use of media to reduce stigma. She infuses the mantra “Nothing about us without us” into all of her scholarly and community-based pursuits. Giulia Barbareschi is a Research Fellow in Disability and Assistive Technology at the UCL Interaction Centre and the Global Disability Innovation Hub. Giulia has worked in hospitals, universities and UN agencies in countries around the world. She leads the research component of AT2030 projects in collaboration with local and international NGOs and start-ups. Her research focuses on understanding how technology can be leveraged to improve the lives of people with disabilities. Giulia’s work lies at the intersection of technology, disability and design with strong influences from disability studies and international development. Bella Bauer is a student of Politics and International Relations at the University of Sydney. She is interested in social policy research; particularly comparative social policy research in the areas of welfare and mental health policy. Denise Beckwith is a PhD candidate at Western Sydney University, and her research explores the sexual lives of women with physical disability in the context of sexuality education provision, sexual expression, and the experience of violence. Denise has worked in the disability-rights space for over twenty years. She is a social work academic who is committed to emphasizing the importance of critical reflection and reflexivity to ensure the rights of people with disability are upheld. Toon Benoot is a Postdoctoral Researcher affiliated to the Department of Social Work and Social Pedagogy at Ghent University. His fields of interests are welfare reform and social work, theories of social justice, and the conceptualization of autonomy and in(ter)dependence. He recently joined the academic workplace on de-institutionalization, which approaches this issue through socio-spatial research. Toon is co-coordinator of the Human Development and Capability Association Thematic Group on Health & Disability. Mario Biggeri is Associate Professor in Development Economics at the Department of Economics and Management, University of Florence. He is the Scientific Director of ARCO – Action Research for Co-Development – and Director of the Scientific Committee of the Yunus Social Business Centre, University of Florence. He has worked for UNICEF and UNDP and has acquired relevant experience in field research about disability and inclusion. He is the co-author of more than 10 books, and he has published extensively in several international journals. He is a Fellow of the Human Development Capability Association and Associate Editor of the Journal of Human Development and Capabilities. Mia Boonen is a university student, theatre maker, educator and writer based in Boonwurrung Country, Australia. She is passionate about representation, access-led artistic processes and finding joy within every community endeavour. Mia is a member of the YDAS’s COVID-19

Contributors  xiii Working Group, who worked collectively on their narrative pieces with other group members. The Youth Disability Advocacy Service (YDAS) is an organization in Victoria, Australia, who works directly with young people with disability between the ages of 12 and 25 to ensure their human rights are being met. Katherine Boydell, PhD, is a sociologist and Head of the AKT (arts-based knowledge translation) Lab at the Black Dog Institute. Katherine uses arts-based participatory action research to explore the lived experience of individuals experiencing mental health issues. Current projects include body mapping with women marginalized by mental illness, disability or refugee status, exploring the experience of anxiety in adolescents using arts-based methods, and using photovoice to explore experiences of women with disability. Her work has identified the theoretical, methodological and ethical challenges of engaging in arts-based knowledge translation. She has published more than 200 journal articles and book chapters and is editing a forthcoming book, Body Mapping in Research. Renata Anahí Bregaglio Lazarte is a Law Professor and Head of the Law School’s Office of Academic Social Responsibility at Pontificia Universidad Católica del Perú. She holds a Bachelor’s in Law and a Master’s in Human Rights from the same university, and Master’s in Fundamental Rights from Universidad Carlos III de Madrid. She founded the Legal Clinic on Disability and Human Rights in 2012 and has led it ever since. She is also a coordinator and researcher at the Interdisciplinary Research Group on Disability of the same university. Eleanor Brown is a Postdoctoral Researcher in rehabilitation based at Oxford Brookes University and has a background in education, social care, and speech-language therapy. Eleanor’s PhD research focused on improving the accessibility of rehabilitation for people with aphasia, a communication impairment after stroke. Her research interests include exploring disabled identity, self-management in rehabilitation, and using a human rights approach to improve social and healthcare access for disabled people, particularly those with communication impairments. As a disabled researcher, Eleanor also has an interest in widening access for disabled people in higher education and research. Anne M. Bryden is a sociologist and occupational therapist with more than 25 years of experience working in spinal cord injury and neurotechnology research. She is Director of Clinical Trials and Research for the Institute for Functional Restoration at Case Western Reserve University, a non-profit committed to expanding technology access to people with paralysis. Her work concentrates on sociology of disability and human rights, by investigating obstacles and facilitators to recovery and reintegration of people who have experienced spinal cord injury. Paula Lucía Camino Morgado holds a Bachelor in Law from Pontificia Universidad Católica del Perú. She is an independent consultant and researcher on human rights. She previously worked as a legal assistant at her law school’s Office of Academic Social Responsibility. Paula is an Adjunct at the Legal Clinic on Disability and Human Rights and in procedural law classes, and a researcher at the Interdisciplinary Research Group on Disability of the Pontificia Universidad Católica del Perú. She focuses her practice on using communications to foster diversity, equity and inclusion in different spaces.

xiv  Research handbook on disability policy  

Maria Engrácia Cardim is a researcher at the Center for Administration and Public Policy from the University of Lisbon. She was professor at ISCSP teaching in graduation, MSc and PhD programmes. She holds a PhD in Social Sciences, specializing in Public Administration, from the University of Lisbon. Her research interests are public policies, policy implementation, social policies, education and training policies, and disability studies from a human rights perspective. In addition to her academic career, she has more than 10 years of experience as manager in Portuguese public administration and public institutes. María Gómez-Carrillo de Castro is a Marie Sklodowska-Curie Fellow with the Project Disability Advocacy Research in Europe. She is currently finishing her PhD in Social Policy at the Instituto Superior de Ciências Sociais e Políticas of the University of Lisbon. Tim Chan is an autistic non-speaker who learned to communicate via typing on a speech-generating device at age nine. With a means to communicate, Tim has completed mainstream schooling to study sociology at university. Tim is passionate about advocating for disabled young people, especially those without speech like himself, who are an extremely marginalized group, and seldom included in conversations on disability. Tim is a member of the YDAS COVID-19 Working Group, who worked collectively on their narrative pieces with other group members. The Youth Disability Advocacy Service (YDAS) is an organization in Victoria, Australia, that works with young people with disability aged 12 to 25 to ensure their human rights are met. Heng-hao Chang is a Professor from the Department of Sociology, National Taipei University, Taiwan. He is the founding president of the Taiwan Society for Disability Studies. His research interests include disability rights movements, representation of disabilities, and inclusive education. He has a long publication history, including the edited volume Disability Studies: Theories and Policy Implication, which introduces disability studies to Chinese language. Chien-Ju Chou is a Taiwanese female disabled activist and the founding director of Taiwan Disabled Women’s Alliance for Equal Rights. Yi-Chun Chou is Professor in the Department of Sociology at Soochow University, Taipei, Taiwan. She holds a PhD in Sociology from Ruprecht-Karls-Universität Heidelberg in Germany. Her research interests include disability employment policies, deinstitutionalization of disability care policies, and comparing disability policies. In recent years, her research focused on the effects of the Convention of Rights for Persons with Disabilities in different welfare regimes. She is the Director of the Chang Fo-Chuan centre for the study of human rights in Soochow University. Federico Ciani is the coordinator of the Inclusive Development research unit at ARCO – Action Research for Co-Development. He focuses his research on disability, inclusion and resilience. Over the years, he has gained strong experience in the field of applied participatory quali-quantitative research co-operating with relevant institutions (e.g. Action Aid, UNDP, UNICEF) both in Europe and in the Global South (e.g. Palestine, Ethiopia, Kenya, Senegal, Tanzania, etc.). He is Adjunct Professor in Management of Complex Humanitarian Emergencies at the University of Florence. He works on relevant European research projects (FP7, H2020) and publishes his research in relevant journals.

Contributors  xv  

Mariano Coello has a Master’s in Clinical Psychology and has worked for over 30 years with migrants and refugee survivors of torture and organized violence. He has held several clinical positions at the NSW Service for the Treatment and Rehabilitation of Torture and Trauma Survivors (STARTTS) where he is currently the Clinical Services and Research Coordinator. Mariano is at present involved in a number of national and international research projects related to best and innovative practice in refugee trauma treatment. He has represented STARTTS in many forums and conferences nationally and internationally and is the co-author of journal articles and book chapters on issues related to refugee trauma. Nora Colton is a Professor of Health Management and Director of the Global Business School for Health (GBSH) at University College London, UK. Nora is a health and development economist. She has undertaken projects in various countries in the Middle East as part of her research and publications. Her current research compares healthcare financing models across different national health systems as well as research on questions concerning leadership and management in healthcare. Renato Antonio Constantino Caycho is a Law Professor at Pontificia Universidad Católica del Perú. He holds a Bachelor’s and Master’s in Human Rights from the same university, and an LLM in International Legal Studies from American University Washington College of Law. He is an Adjunct Professor at the Legal Clinic on Disability and Human Rights. Renato is a researcher at the Interdisciplinary Research Group on Disability of the Pontificia Universidad Católica del Perú. Laureane Marília de Lima Costa is a scholarship psychologist at the Coordination of Special Pedagogical Actions at the Federal University of Jataí (CAPE/UFJ), external collaborator at the Laboratory of Inclusive Education of the University of the State of Santa Catarina (LEdI/ UDESC), researcher at the Cáue Institute – Inclusion Networks, doctoral student in Education in the Faculty of Education of the University of São Paulo and has a Master’s in Education from the Federal University of Jataí (PPGE/UFJ). She is part of the study groups of the Center for Disability Studies at the Federal University of Santa Catarina (NED/UFSC) and the Laboratory of Inclusive Education at the University of the State of Santa Catarina (LEdI/ UDESC). She is interested in emancipatory sex education, feminist disability studies, inclusive education, and higher education. She lives with a high level of physical impairment due to disability and both lives and researches the politics and policy of care relations. Mariana Lúcia Agnese Costa e Rosa is a journalist and Master’s student in Education at University of São Paulo. Mariana is founder of the Cáue Institute and member of the Helen Keller Feminist Collective. Mariana is a disability rights activist, inclusive education consultant, and mother, interested in inclusive education, human rights, and ethics of care themes. Tillie Curran is a Visiting Fellow at the University of the West of England, UK, working in co-production research around disability rights and robotics and teaching in social work around disabled children’s childhood studies. Jamie Danemayer is a Research Assistant on the AT2030 project at the Global Disability Innovation Hub and the International Centre for Evidence in Disability at LSHTM. Her career in population health data science focuses on improving health equity and increasing access

xvi  Research handbook on disability policy to assistive technology. Jamie has led collaborative research with the WHO, International Research Council on Artificial Intelligence, and European Disability Forum. Sheelagh Daniels-Mayes is an Indigenous Australian Kamilaroi woman who lost her eyesight as a child. At the time of writing this chapter, Sheelagh was located with the Indigenous Research Hub at The University of Sydney, coordinating the Sydney Indigenous Research Network. Her current position is Lecturer Indigenous Studies and Deputy Associate Dean, Diversity and Inclusion, Disability with the Faculty of Arts, The University of Melbourne. Her work focuses on Aboriginal education, Indigenous studies and methodologies, and she is a disability scholar and activist. Sheelagh is particularly concerned with higher education’s responsibilities in achieving equity and social justice for society’s marginalized people. She uses Critical Race Theory, cultural responsiveness, Critical Access Studies and intersectionality alongside Indigenous methodologies. Sheelagh acknowledges the unceded First Nations lands upon which she works and lives. Sunil Deepak is an expert in Disability Studies, with additional training in Epidemiology and Biostatistics. Over the past decade, he has been engaged in two main areas of research and consultancy in different low- and middle-income countries (such as India, Palestine, Liberia, Mongolia), namely emancipatory disability research and assistive technology services. He has specific experience at international level in training, quantitative and qualitative research, preparation of learning materials, feasibility studies, project management and project monitoring and evaluation. He has been closely associated with the International Disability and Development Consortium. He has collaborated extensively with different UN organizations, especially the World Health Organization. He is a peer reviewer for different international journals and has a strong record of publications. Alexandra Devine is a Senior Research Fellow in the Centre for Health Equity in the Melbourne School of Population and Global Health at the University of Melbourne. Her local and international work focuses on mental health and disability. Alexandra focuses on experiences and outcomes of people with disability engaged with systems such as the National Disability Insurance Scheme and Australia’s Disability Employment Services Program. Angela Dew, PhD, is a sociologist with 40 years’ experience in the Australian disability sector. Her research and teaching relates to understanding the intersections that impact on the lives of people with disability due to a range of complex support needs. Her work includes people with disability from refugee and asylum seeker backgrounds, those living in rural and remote locations, and people from Aboriginal and Torres Strait Islander backgrounds. Angela uses co-designed qualitative and arts-based methods within an integrated knowledge translation framework to ensure her research results in practical solutions that can be tailored to individuals and local communities. Em Dewhurst is a 23-year-old Queer and Disabled youth advocate based in Naarm, Australia. They work as a Jobs Victoria Advocate at a Settlement Not for Profit and a Together Facilitator at YDAS. They have been involved with mental health, LGBTQIA+ and other disability organizations. They have a passion for intersectionality and creating accessible spaces. Em is a member of the YDAS’s COVID-19 Working Group, who worked collectively on their narrative pieces with other group members. The Youth Disability Advocacy Service (YDAS)

Contributors  xvii is an organization in Victoria, Australia, that works directly with young people with disability between the ages of 12 and 25 to ensure their human rights are being met. Helen Dickinson is Professor of Public Service Research in the Public Service Research Group at the School of Business, University of New South Wales, Canberra. Her expertise is in public services, particularly in relation to topics such as governance, policy implementation and stewardship of fourth industrial revolution technologies. Sarah Donnelly is an Assistant Professor in Social Work at UCD School of Social Policy, Social Work and Social Justice. She is co-convenor of the European Network for Gerontological Social Work, and her research interests include ageing and dementia, adult safeguarding and capacity and decision making. Sarah is a registered social worker and an active member of the Irish Association of Social Workers. Arne Henning Eide is Chief Scientist at the Department of Health Research, SINTEF Digital, Oslo, Norway, and Professor at Norwegian University for Science and Technology, Trondheim, Norway. He has 25 years of experience within Global Health and Disability, and more specifically in disability statistics, health services, assistive technology and rehabilitation. Eide has been engaged as an expert by several international organizations and recently contributed as a scientist and as a member of the editorial team for the WHO’s Global Report on Assistive Technology. Alexander Elliott is a member of the Australian Society of Authors and a writer. He works at the Council for Intellectual Disability as a Project Worker. In his work, Alex uses his expert knowledge from his own experiences as a person with disability and his skills to make resources and training. Brooke Ellison is a Professor of Medical Ethics and Disability at Stony Brook University, New York, where she researches and teaches future engineers, physicians, and healthcare professionals how to incorporate the lives and needs of people with disabilities into their work. Professor Ellison has a spinal cord injury, which means technology is deeply integrated into her life as well as her work. Paul Emong is Lecturer in the Department of Community and Disability Studies and Head of Disability Support Services at Kyambogo University. He has seven years’ experience in lecturing at a university and altogether 22 years’ work experience in community development and disability inclusion. Prior to joining teaching, Paul worked for Disability Rights NGO in Uganda for 10 years. Paul holds a PhD from the University of Leeds, UK, a Master of Arts in Human Rights from Makerere University, Postgraduate Diploma in Project Planning and Management of Uganda Management Institute and Bachelor of Statistics from Makerere University, Uganda. Paul’s research interests are in inclusive development, inclusive education, social justice principles and practices. Delia Ferri is a Professor of Law at Maynooth University (MU) and co-Director of the MU Assisting Living & Learning Institute. Delia is also an affiliated researcher at the DIRPOLIS Institute of Scuola Superiore Sant’Anna (Italy), an international Fellow at the Burton Blatt Institute of Syracuse University (USA), and a member of the Royal Irish Academy Ethical, Political, Legal and Philosophical Studies Committee. She has authored several academic publications focusing on the rights of people with disabilities, participatory processes, and

xviii  Research handbook on disability policy cultural diversity. Delia is currently Principal Investigator of the DANCING project, funded by the European Research Council. Jo Ferrie is a leading disability studies scholar based at the University of Glasgow. She has written extensively on the value of a human rights framework to remove disabling barriers to being and doing, writing on rights and caring, measuring rights and on realizing rights for disabled people. As a member of the Research Advisory Group to the Scottish Human Rights Commission, Jo has completed several projects including an evaluation of Scotland’s National Action Plan for human rights. Jo is an internationally recognized methodologist and also works with the Scottish Graduate School of Social Sciences as Deputy Director for Training. Luciano Bottini Filho is a Lecturer in Human Rights Advocacy at Sheffield Hallam University and researches the international right to health within health technology assessments. He holds an LLM in Human Rights from the University of Nottingham, as a Chevening Scholar, by nomination of the UK Foreign Commission Office Affairs Committee, drafting reports on health policies such as nudge laws, stress at work and palliative care. As a journalist, Luciano had occupied numerous reporting roles in Latin America for the major news outlets in the region for 10 years, covering human rights violations in the war on drugs, mass trials, judicial activism and decisions on socio-economic rights. Karen R. Fisher is a Professor at the Social Policy Research Centre, UNSW Sydney. Her research interests are the organization of social services in Australia and China; disability and mental health policy; inclusive research and evaluation; and social policy process. Karen applies mixed methodology and adopts inclusive research methods with people with disability, families, policy officials and services providers. Joe Foster is passionate about advocating to address the many ills that poverty creates, due to his first-hand experiences as a person who is now blind. Joe has a BSc in Electrical Engineering followed later with an MBA in Business Economics. Since graduating he has been involved both in volunteerism and as an international worker in Global South countries and in Canadian disability and political advocacy. Patsie Frawley is an Associate Professor of Disability and Inclusion Studies at the University of Waikato in Hamilton, New Zealand. She has been researching about sexuality and relationships alongside people with intellectual disabilities for over two decades internationally. Her research has informed policy and practice in this area where she continues to advocate for recognition of sexuality, and reproductive and relationship rights for all people with disabilities. Jennifer French is the Founder and Executive Director of Neurotech Network, a non-profit organization that focuses on education and advocacy of neurotechnologies, and is the current President of the North American SCI Consortium. She serves on several advisory boards including the IEEE Neuroethics Initiative, NINDS Common Data Elements, OpenMinds platform and the American Bionics Project. She is the current Chair of the CDMRP Spinal Cord Injury Research Program programmatic committee. She is the author of On My Feet Again (Neurotech Press, 2013) and is co-author of Bionic Pioneers (Neurotech Press, 2014). French lives with tetraplegia due to a spinal cord injury, is an early user of an implanted neural prosthesis and is a Paralympic silver medalist. Her latest TED talk is available: https://​www​.youtube​.com/​watch​?v​=​tkspAQW​_2sQ.

Contributors  xix Olivia Geehan is completing a degree in social work. She is interested in the interaction between research and policy. Marivete Gesser is a Professor on the Post-Graduate Program in Psychology at Federal University of Santa Catarina (UFSC), Coordinator of the Center for Disability Studies (NED-UFSC) at the same university, and a member of the Gender Studies Institute (IEG). Dr Gesser’s studies focus on the following topics: intersections of gender, sexuality, race, poverty, and disability in Brazil; psychology and disability studies; public policy and human rights for people with disabilities; disability justice and inclusive education. Gerard Goggin is Professor of Media and Communications at the University of Sydney. From 2019–2022, he was Wee Kim Wee Professor of Communication Studies, Nanyang Technological University. Gerard has a longstanding interest in social justice, communication, and emerging digital technologies, reaching back to the early 1990s when he worked as Policy Advisor for Consumers’ Telecommunications Network. He has a particular interest and involvement in disability, accessibility, technology, and social justice issues, with key books including Digital Disability: The Social Construction of Disability in New Media (Rowman & Littlefield, 2003), Disability in Australia (UNSW Press, 2005), Disability and the Media (Palgrave, 2015), Normality & Disability (Routledge, 2018), and the Routledge Companion to Disability and Media (Routledge, 2020). Dan Goodley is Professor of Disability Studies and Education and C-Director of the iHuman Research Institute at the University of Sheffield, UK. Brian Gran is a sociologist and lawyer in the faculty of the Sociology Department, Law School, and Mandel School of Applied Social Sciences of Case Western Reserve University (USA). His scholarship concentrates on human rights, law, and social policy. Gran was a Jefferson Science Fellow appointed to the US State Department (2020‒2021). He has consulted with the UN on the human right to science around discrimination and disability. As Chair of Hope for Children Policy Center, Gran advises on rights of young people who have disabilities. He gained insights into limitations of rights while representing individuals in disability legal cases. Giampiero Griffo is a member of the World Council of DPI (Disabled People International) and holds relevant roles in several DPOs (EDF, FID, FISH). He is the coordinator of the Italian National Observatory on Disability (the monitoring body on implementation of CRPD in Italy), chairperson of the Italian Network on Disability and Development and member of the San Marino Bioethics Committee. He was a member of the Italian delegation which contributed to the drafting of the CRPD. Moreover, he is Co-director of the Center for Governmentality and Disability Studies Robert Castel from Suor Orsola Benicasa University of Naples. He has published several articles and essays on bioethics, human rights, employment, inclusive education, universal design, emancipatory research, emergency, social welfare, international cooperation and more. Paul Harpur is an Associate Professor with the University of Queensland Law School, former Paralympian and chairs the University of Queensland Disability Inclusion Group. He has published several monographs with Cambridge University Press as well as publishing widely in legal and disability studies journals in Australia, the US and the UK. In 2019 Paul was awarded a Fulbright Future Scholar that enabled him to study at Harvard Law School and he maintains

xx  Research handbook on disability policy ongoing fellowships with the Harvard Law School Project on Disability and with the Burton Blatt Institute at Syracuse University. Paul’s sector leading work on disability inclusion led to him being appointed to the Universities Accord Ministerial Reference Group. Paul wishes to acknowledge the Turrbal and Jagera people, who are the traditional custodians of the land on which the University of Queensland is situated. Julio Hasbún-Mancilla is a social anthropologist, Director of Symbolon Consulting, and Professor in the Department of Industrial Engineering at the Universidad de Chile. His research interests are the processes of communication and participation in Chile; multilevel interventions of public health policies, on issues such as disability, water, zoonosis, among others, from a health promotion approach. Julio is co-coordinator of the Indigenous People thematic group of the Human Development and Capability Association. Maree Higgins, BSW(Hons), PhD, is a Senior Lecturer in Social Work, convenes the BSW(Hons) discipline in the School of Social Sciences, UNSW, and has extensive experience in social work practice. Her research focuses on how people’s cultures and lived experiences shape their understandings of human rights, significant life transitions and well-being, and how poetry, metaphor and storytelling are useful in intercultural research. Current projects include ethics in CBPR with people from refugee backgrounds, care of older people, the criminalization of missing girls, and disability policy and practice with people from refugee backgrounds. Catherine Holloway is Academic Director and co-founder of the Global Disability Innovation Hub and UCL Professor of Interaction Design and Innovation. Catherine leads the research and innovation clusters of AT2030 and is a member of the WHO Expert Advisory Group on Assistive Technology. Catherine’s research portfolio focuses on the social use of technology, developing innovation tools and systems to increase the range of inclusive solutions and developing measurements of benefit which are rooted in human capabilities. Sarah I. Huque completed her PhD in Geography at the University of St Andrews. Her doctoral research involved working with Malawian disability rights advocates, exploring their experiences of activism in a participatory and co-designed project. Sarah’s broader career has involved work at the intersection of public health and social justice, with an interest in methodological innovation. She is currently a Research Fellow on the Suicide Cultures: Reimagining Suicide Research project at the University of Edinburgh. Mary Ann Jackson has qualifications and/or accreditations in Applied Science, Architecture, Urban Planning, Sustainability, and Access Consulting. She has 30+ years’ experience in built environment research, design, implementation, and assessment. Her innovative work around people with disabilities’ lived experience of built environment accessibility, disaster reconstruction, and equitable housing has received recognition locally and internationally. She is currently undertaking a PhD focused on human rights-based approaches to improving neighbourhood built environment accessibility. Mary Ann is also the Director of Visionary Design Development Pty Ltd, a transdisciplinary consultancy working across Accessibility, Research, and Architecture, and a member of the IAAP Accessible Built Environment Taskforce.

Contributors  xxi  

Sionainn Jans is a 21-year-old autistic woman from rural Victoria who was diagnosed at the age of three, fuelling her passion for disability inclusion and advocacy, specifically among autistic women. Outside of this, she works full-time and enjoys spending time in nature, travelling locally with her dogs and writing creatively. Catherine Elisa John is a PhD Researcher in Mental Health and Wellbeing at the School of Health Sciences, University of Nottingham, UK. Her research interests include mental health, recovery, homelessness, and gender. In her current doctoral work, she makes a feminist enquiry of mental health recovery among homeless women in Kerala, India. Kelley Johnson, BA, MA, PhD, is an internationally recognized scholar in the fields of disability, institutional closure, social inclusion, rights and gender. She currently holds two honorary professorships at Deakin University and UNSW in Australia. She has researched and authored extensively in the field of disability with particular focus on research with people with learning disabilities. Her research is applied and aims to better understand the barriers that people with disabilities encounter in living good lives and to ensure that their voice is heard in research, policies and practice relating to issues central to their well-being. Mahuya Kanjilal is a Senior Lecturer of Social Work and Social Care at the University of Wolverhampton. She is a social researcher specializing in community participatory research with minority ethnic communities in the UK. Her main focus is engaging diverse communities in academic research and including service users’ voice. Rainer Kattel is Professor and Deputy Director at the Institute for Innovation and Public Purpose, UCL. He has published extensively on innovation policy, its governance and specific management issues. His recent books include The Elgar Handbook of Alternative Theories of Economic Development (edited with Erik Reinert and Jayati Gosh; Edward Elgar Publishing, 2016), and How to Make an Entrepreneurial State. Why Innovation Needs Bureaucracy (with Wolfgang Drechsler and Erkki Karo; Yale University Press, 2022). Grace Khawam is a disability activist, a Lecturer in Public Health at the American University of Beirut, Lebanon, and a PhD candidate in Disability and Development at Oxford Brookes University (UK). Her research focuses on job readiness and employment for youth with intellectual disabilities. She is a Steering Committee member of the Disability Hub in Lebanon. She holds an Associate Fellowship in Higher Education Teaching, a Doctorate in Pharmacy and a Master’s degree in Public Health. She also has a certificate in Global Mental Health from Harvard University, with a focus on refugee trauma. Naonori Kodate is an Associate Professor in Social Policy and Social Robotics at University College Dublin and the founding Director of UCD Centre for Japanese Studies. His research interests include comparative public policy, gender equality in STEM education, patient safety, and science, technology and society (STS), particularly in the use of assistive technologies in health and social care. He is the Principal Investigator of an interdisciplinary international research project “Harmonisation towards the establishment of Person-centred, Robotics-aided Care System (HarP:RoCS)”, and co-produced a documentary film entitled Circuits of Care: Ageing and Japan’s Robot Revolution.

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Mukta Kulkarni is a Professor at the Indian Institute of Management Bangalore, Karnataka, India. Her research is focused on inclusion of employees with disabilities across workplaces. Her work has been published in journals such as the Academy of Management Journal, Human Relations, the Leadership Quarterly, and the Journal of Organizational Behavior. Nicole Laurance is a critical social work practitioner who focuses on fostering inclusive and equitable civic engagement in order to build socially just communities. Nicole is an educator who teaches social work and social science units at Western Sydney University, as well as social work units at the Australian College of Applied Professions. Ann Leahy is a Postdoctoral Researcher in Sociology with the DANCING project funded by the European Research Council and based in Maynooth University. Formerly, she was Assistant CEO of an NGO, Age & Opportunity, with responsibility for policy and public affairs and for the organization’s work on arts and culture. She is also a qualified solicitor. Her book, Disability and Ageing – Towards a Critical Perspective (Policy Press 2021), based on her PhD research, examines intersections between disability and ageing. Academic awards include postgraduate and postdoctoral awards from the Irish Research Council and a Hume Scholarship from Maynooth University. Kirsty Liddiard is Senior Research Fellow in the School of Education and the iHuman Research Institute at the University of Sheffield, UK. Cindy Liu (She/Her) is an avid youth advocate and a university student. She is passionate about increasing mental health literacy, disability rights and diverse representation through her focus on bringing forth the voices and concerns of young people and exploring how society, culture, identity and spaces affect young people. She has done work with various organizations exploring the spaces of intersection such as youth, disability, mental health and diverse backgrounds. Cindy is a member of the YDAS’s COVID-19 Working Group, who worked collectively on their narrative pieces with other group members. The Youth Disability Advocacy Service (YDAS) is an organization in Victoria, Australia, who works directly with young people with disability between the ages of 12 and 25 to ensure their human rights are being met. Karla Garcia Luiz is a Brazilian psychologist from the Catholic University of Santos (UNISANTOS), she holds a PhD in Social Psychology from the Federal University of Santa Catarina (UFSC). She is a member of the Center of Disability Studies (NED/UFSC) and researcher at the Cáue Institute – Inclusion Networks. She is a federal civil servant, working as a psychologist at the Federal Institute of Education of Santa Catarina (IFSC), interested in feminist disability studies, ethics of care, inclusive education and disability justice. Karla writes from her lived experience as a mother with disability. Sellah Lusweti holds a PhD in Educational Psychology (Measurement and Evaluation), she is a Lecturer in the Department of Educational Psychology and Special Needs at Pwani University, and has 10 years’ experience in teaching, research and community service. She is a seasoned researcher and consultant on quality of education (with a focus in monitoring and evaluation) in relation to gender, resource provision, peace education, and ethics and integrity. She has special interest in enhancing resilience to overcome the impact of adversity on learning and livelihood.

Contributors  xxiii Brent Lyons is York Research Chair of Stigmatization and Social Identity and Associate Professor of Organization Studies the Schulich School of Business at York University, Ontario, Canada. His research explores how processes of stigmatization and marginalization play a role in employees’ work experiences, including how these processes disadvantage employees’ access to power and resources in organizations, and how employees challenge and overcome these disadvantages. His research has been published in the Academy of Management Review, Journal of Applied Psychology, Organizational Behavior and Human Decision Processes, and the Journal of Management. Yurie Maeda lectures at Technological University Dublin in the areas of business and ICT. Following her postgraduate qualifications in software engineering she gained extensive IT and project management experience in industry with a number of large multinational companies. Her current research interests include assistive and smart technologies, project management, electronic commerce and pedagogical practices for undergraduate teaching. Yvette Maker is a Senior Lecturer at the University of Tasmania’s Faculty of Law. She has a background in law and policy, with a particular interest in the intersections of disability rights and feminist perspectives. With Bernadette McSherry, she co-edited Legal, Policy and Practical Responses to Restrictive Practices in Health Care and Disability Settings (Routledge, December 2020). Her book, Care and Support Rights After Neoliberalism, was published in 2022 (Cambridge University Press). Hasheem Mannan completed his PhD on disability policy and family studies at the University of Kansas. Prior to his appointment at University College Dublin he was a Senior Research Fellow at the Nossal Institute for Global Health, University of Melbourne. He held a Marie Curie Fellowship at the National Institute for Intellectual Disabilities, Trinity College Dublin and has worked for the University of Kansas, the World Health Organization, the US National Center for Health Statistics, and the National Disability Authority (Ireland). Hasheem’s areas of expertise include content analysis of health policies; human resources for health and service delivery; and social inclusion. Flavia Marcello is Associate Professor at Swinburne University’s School of Design where she teaches the history, theory and practice of architectural design with a particular focus on the inter-relationship between art and architecture, between design and health. Flavia also conducts action research in the role of design to improve health outcomes. Design studios are used to explore new paradigms for aged care, in particular for people with dementia. She is a leader of the Career Development team within SWAN (Swinburne Women’s Academic Network) and has also worked as Professional Development Manager at the Australian Institute of Architects. Fotini Marini, PhD in Social Welfare Law, MA in Social Law and BA in Law, is a social law and policy expert, Head of the Social Welfare and Inclusion Hub in the Social Administration Research Lab (https://​sarl​.uniwa​.gr) at the University of West Attica in Athens (www​.uniwa​ .gr). Amy Marks is the Youth Connection and Development Officer in the Youth Action Team for Children and Young People with Disability Australia.

xxiv  Research handbook on disability policy  

Abi Marutama is a Human Rights Analyst working on disability rights legislation at the Indonesian Ministry of Law and Human Rights. As a person with visual impairment and legal scholar, he works closely with international organizations and mainly the US government to promote better disability rights policies and exchange information on the implementation of the Indonesians with Disability Act which led him receive the 2020 US Alumni Impact Award. Fiona McKay, PhD, is Associate Professor in the School of Health and Social Development at Deakin University. Dr McKay is a qualitative researcher who works with human rights and vulnerable populations. She has several years’ experience exploring inequities and inequities experienced by groups whose lives are impacted by social and institutional policies and negative community perceptions. Damian Mellifont leads and contributes to studies that advance the economic and social inclusion of people with disability through his position of Lived Experience Postdoctoral Fellow. Dr Mellifont is a member of the Centre for Disability Research and Policy leadership team at The University of Sydney and lead of the lived experience-led research work stream. Anahí Guedes de Mello is an anthropologist with a PhD in Social Anthropology from the Federal University of Santa Catarina (UFSC). She is currently a collaborating researcher at the Center for Disability Studies (NED) at UFSC and an Associate Researcher at Anis – Institute of Bioethics, based in Brasília. Ms Guedes de Mello is also coordinator of the Brazilian Association of Anthropology (ABA) Committee on Disability and Accessibility and a member of the Latin American Council of Social Sciences (CLACSO) Working Group for Critical Studies on Disability. Brigit Mirfin-Veitch is Director of the Donald Beasley Institute. As a sociologist, Brigit has a strong interest in understanding the social lives of people with learning disability and is committed to initiating and achieving social change through research. She is also a Research Associate Professor with the Centre for Postgraduate Nursing Studies, University of Otago, Christchurch. Jess Mitchell is a Storytelling and Development Officer in the Youth Action Team for Children and Young People with Disability Australia. Sophie Mitra is a Professor in the Department of Economics, co-director of the Disability Studies Program and founding director of the Research Consortium on Disability at Fordham University. Her research interests relate to disability, health, international development and social protection. She is the author of Disability, Health and Human Development (Palgrave MacMillan, 2018). She has studied the economic impact of disability and mental illness, multidimensional poverty, the association between disability and poverty, and the definition of disability. Daniel Mont is the CEO and Founder of the Center for Inclusive Policy, as well as a Senior Honorary Research Fellow at the Leonard Cheshire Disability and Inclusive Development Centre at University College London, working on issues of inclusive development, disability and poverty, and inclusive social services in developing countries. He works with a wide range of international agencies, bi-lateral aid agencies, and NGOs. He previously worked at the World Bank where he worked extensively on disability issues for six years, also serving as the

Contributors  xxv chair of the analysis working group for the United Nation’s Washington Group on Disability Statistics. Zuleima Dafne Morgado-Ramirez is Senior Research Associate at the University College London (UCL) Interaction Center and at the Global Disability Innovation Hub and a member of the Global Cooperation on Assistive Technology and founder of the Neurodivergent Staff Network at UCL. Zuleima’s research is across disability, assistive technology, disability studies, human–computer interaction, social development, and biomedical engineering. Zuleima is passionate about multidisciplinary research that aims to achieve technology that is affordable, appropriate, accessible, and inclusive. Zachary A. Morris, PhD, is an Assistant Professor at the Stony Brook School of Social Welfare and a Senior Associate at the Center for Inclusive Policy. He has published widely on the financial and social inclusion of people with disabilities worldwide. He is currently leading a US government-funded project quantifying disability-related costs and un-met needs for people with disabilities in the US. Mahmoud Murad, researcher, is a person with disability from Syria. After school he worked in a printing press, forming a trade union committee in 2009 to demand a reduction from >70 hours per week. During the Syrian revolution he was a citizen journalist, launched a magazine, and worked with the Red Crescent. In 2013 he moved to Lebanon, volunteering in civil society work and refugee rights. In 2014 he resettled to Australia and created The Syrian Australian Forum network in Australia on Facebook. In 2016 he won the Questathon Startup competition for his website RefugeeHub.com.au. Mahmoud is a bi-cultural researcher at UNSW examining human rights using arts-based research methods and studying youth perspectives on “The Cultural View of Disability”. Julieth Musengi is a qualified nurse with experience in palliative care, advocacy, health promotion and child protection. A practising public health specialist, her interests lie in promoting access to health by children, disabled persons and other underserved minority groups within society. She is a member of International Association for Hospice and Palliative Care and is a certified Palliative Care State Final Examiner for the Oncology Palliative Care Nursing diploma in Zimbabwe. Martin Musengi is Associate Professor of Deaf Education and Inclusive Education at Great Zimbabwe University where he is Director of Quality Assurance and Academic Planning. He is a Fulbright Scholar (Gallaudet University – Washington, DC) whose research interests revolve around disability rights and disability activism, sign language ideologies and indigenous knowledge systems. He is co-editor of the book Inclusion as Social Justice: Theory and Practice in African Higher Education (Brill, 2020). Martin also serves on the editorial boards of three journals: Deafness and Education International, Dzimbahwe Journal of Multidisciplinary Research, and Journal of New Visions in Educational Research. Jun Nakagawa is a Professor at the Faculty of Contemporary Law, Tokyo Keizai University (Tokyo University of Economics). He is a nationally recognized expert in disability law, especially in the areas of disability discrimination, disability employment policy to transition into open labour market, and independent living. He also chaired two reports about reasonable accommodation to the Minister of Cabinet Office. Internationally, he has worked with foreign

xxvi  Research handbook on disability policy governments, non-governmental organizations, and academic institutions on disability rights laws in Australia, Canada, China, Taiwan, Thailand and the US. Sue Olney is a Policy Research Fellow in the Melbourne Disability Institute at the University of Melbourne, and a Visiting Fellow in the Public Service Research Group at UNSW Canberra. Her research examines market-based reform of public services, with a focus on welfare-to-work policy and disability. She has worked in government and the not-for-profit sector and has been involved in numerous cross-government and cross-sector initiatives, committees and working groups to promote access and equity in employment, training and disability services in Australia. Diarmuid O’Shea (MD) is a Consultant Physician in Geriatric and General Medicine at St Vincent’s University Hospital, Dublin. He was the Registrar of the Royal College of Physicians of Ireland (RCPI) between 2014 and 2020. He served as Vice-President of Education and Professional Development at RCPI. He was also the National Specialty Director in Geriatric Medicine in Ireland, the President of the Irish Gerontological Society of Ireland and a Clinical Lead for the National Clinical Programme for Older People. Pey-chun Pan is an Assistant Professor in the Department of Social Work, National Pingtung University of Science and Technology, Taiwan. Her research is on accessibility, transport policy for disabled people, and social movement of people with Hansen’s Disease in Taiwan. She has joined several research projects about independent living policy, reasonable accommodation on health issues, and the development of Taiwan human rights indicators for UNCRPD. She is also a horticultural therapist. She has published several journal articles in Community Development Journal Quarterly, Journal of Disability Research, and Taiwan: A Radical Quarterly in Social Studies. Martin Partridge, BA (Hons), PGDip, MA, PhD, is Programme Lead for Social Care and Health & Wellbeing, Senior Lecturer of Social Care, University of Wolverhampton, UK, and Fellow of the Higher Education Academy. Martin specializes in Chinese diasporic communities with a focus on policy development, sociological perspectives of disability and culture and World Café methodology. Aneesh Peter is a PhD Researcher in Sociology at the Department of Sociology, University of Hyderabad, India. His research interests include disability, education, work, and corporeality. His doctoral work focuses on the corporeality of disabled people in workspaces. David Pettinicchio is an Associate Professor of Sociology at the University of Toronto and the Munk School of Global Affairs and Public Policy, Canada. His work lies at the intersections of inequality, political sociology, culture, social movements, policy, and disability. He is the author of the book Politics of Empowerment (Stanford, 2019) and has recently published numerous studies on the impacts of COVID-19 on disability, economic insecurity, and mental health. Paula Campos Pinto holds a PhD in Sociology from York University, Canada. She is an Associate Professor at the School for Social and Political Sciences (ISCSP) of the University of Lisbon where she also coordinates the Observatory on Disability and Human Rights (http://​ oddh​.iscsp​.utl​.pt/​index​.php/​pt/​), a platform gathering disability researchers and activities to develop research and policy advice on disability policy. Her research interests span disability

Contributors  xxvii policy and human rights, disability and gender, and disability in the Global North and South and she has published extensively at national and international levels on those topics. She is a member of the core research team of European Disability Expertise (former Academic Network of European disability experts). Eban Pollard is a Project Coordinator with Inclusion Australia, Australia’s peak body for people with an intellectual disability. Eban has worked in disability advocacy in Australia and Indonesia for nine years and is passionate about supporting organizations run by and for people with a disability. Lengga Pradipta is currently a PhD Researcher in the Institute of Asian Studies, University of Brunei Darussalam. She is also working for the Indonesian government in the National Research and Innovation Agency (BRIN). She focuses on gender and development issues particularly in Southeast Asia. Michael J. Prince is the Lansdowne Professor of Social Policy at the University of Victoria, Canada. He is the author of Absent Citizens: Disability Politics and Policy in Canada (University of Toronto Press, 2009), Weary Warriors: Power, Knowledge, and the Invisible Wounds of Soldiers (with Pamela Moss, Berghahn Books, 2014), and Struggling for Social Citizenship: Disabled Canadians, Income Security, and Prime Ministerial Eras (McGill-Queen’s University Press, 2016). Erin Pritchard is a Senior Lecturer in Disability Studies at Liverpool Hope University. She is also a core member of the Centre for Culture and Disability Studies. Her recent book, Dwarfism, Spatiality and Disabling Experiences (Routledge, 2021), adopts an interdisciplinary approach, by drawing on theories within human geography and disability studies to explore the social and spatial experiences of people with dwarfism. She co-edited a special issue on representations of dwarfism for the Journal of Literary and Cultural Disability Studies. Her work has also appeared in Disability and Society and the Scandinavian Journal of Disability Research. Peter Raisbeck is Associate Professor of Architectural Practice at the Melbourne School of Design University of Melbourne. He has published around 60 book chapters, and journal and conference papers. In September of 2018 he was diagnosed with Motor Neurone Disease. In 2020 Peter undertook a number of online poetry writing workshops at the Victorian Writers Centre with the poet Andy Jackson. He is currently working towards publishing a chapbook of his poetry. Kim Robinson, PhD, has been a social work practitioner and manager in community health and refugee services, and an academic in Australia, Timor Leste and the UK, and is currently a Senior Lecturer in Social Work at Deakin University. Kim’s research interests are focused on frontline healthcare and social workers working with refugees and asylum seekers, service provision in health and social work settings, family violence, human rights, strategies for community development and empowerment of CALD communities. She has published in the areas of asylum and refugee mental health, family violence, and social justice issues with young unaccompanied minors.

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Sally Robinson is Professor of Disability and Community Inclusion, Flinders University, Australia. Focused on opportunities and barriers to inclusive lives for people with disability, Sally’s work takes an interdisciplinary and collaborative focus to resolving key social policy concerns such as safety and abuse, well-being, participation and funding and organization of community services. Most of Sally’s work has been co-produced with people with disability and generated from their priorities. Rudi Roose is Associate Professor of Social Work affiliated to the Department of Social Work and Social Pedagogy at Ghent University. His field of interest is the development of critical social work within managerial contexts. He is one of the promotors of the academic workplace on de-institutionalization and editor-in-chief of the European Journal of Social Work. Katherine Runswick-Cole is Professor of Education and Director of Research in the School of Education at the University of Sheffield, UK. Miream Salameh, Bachelor of Fine Art (VCA), works in painting, sculpture, video and performance. Miream studied at the Fine Art Institute in Syria and has participated in many group exhibitions in Syria and overseas. Her artwork addresses identity, displacement, and conflict, especially related to the suffering of the Syrian people, who are being violently oppressed for resisting dictatorship. Miream’s work has been shown in the group exhibitions Syrian Story, solo exhibitions in Space Beaac in 2015 and The Isolation Cell 185,180, in Thirning Villa Gallery in Sydney in 2019. Among her many talents, Miream is a qualified Arabic translator. Daniel Samosh is an Assistant Professor of Employment Relations at Queen’s University in Kingston, Ontario, Canada. His research is focused on the career success and workplace inclusion of persons with disabilities. Previously, he was a Postdoctoral Research Fellow with the Centre for Industrial Relations and Human Resources at the University of Toronto and the Institute for Work and Health. He completed his PhD in Organizational Behaviour at Queen’s University. Alecia Santuzzi is a Professor in the Social-Industrial/Organizational Psychology Program and Director of Research Methodology Services at Northern Illinois University, DeKalb, Illinois, US. She received her PhD in Psychological Sciences from Tulane University and completed postdoctoral training in Quantitative Methods at the University of Illinois, Urbana-Champaign. Dr Santuzzi conducts research on the experience of disability stigma and identity management decisions in the workplace. Her most recent work considers social and individual factors that contribute to a worker’s decision to disclose a disability, and the costs and benefits of those decisions. Jackie Saunders is a Ngarrindjeri, Wirangu, Kokatha and Kaurna painter known for her bold brushstrokes and dynamic use of colour. Describing herself as “the child of a salt water woman and a desert dwelling man” Jackie takes inspiration from the natural world and creates vivid artworks which are imbued with stories. Unearth was created in response to the minerals collection at the South Australian Museum as part of Tutti Arts’ project Reaching Out. “I got inspired by the agate”, says Jackie. “I like the patterns on the rocks and the colours.” Jackie’s author contribution to the book is on the front cover.

Contributors  xxix  

Sophie Savage is an Associate Lecturer in Sociology and Psycho-Social researcher at the University of the West of England in Bristol, UK. The Disability Rights and Robotics project has a diverse co-production team which includes people with lived experience of disability, carers, students and academics in Social Sciences and Robotics; Sophie is a member of this team. Sophie is a disabled academic, who contributes lived experience to teaching, learning and research. Monica C. Schneider, PhD, is Professor of Political Science at Miami University, located in Oxford, Ohio. Her expertise lies in how people form stereotypes based on gender and disability. She also studies the gender gap in political ambition. She is also passionate about the advancement of women and minorities in the academy and improving outcomes for undergraduates. Her research has been published in many journals including Political Psychology, American Politics Research, Electoral Studies, and Politics, Groups, and Identities. Halimu Shauri is a Consultant Sociologist, lecturer and Dean of the School of Humanities and Social Sciences, Pwani University in Kenya. He has over 21 years of teaching experience in Kenya and abroad including Germany as a Visiting Professor at the Technical University of Munich (TUM). He has authored many books, book chapters and journal articles. His recent research collaborations are with the Chair Sociology of Diversity (TUM) in Germany working on issues of disability, livelihood and inclusion, Social Return on Investment of livelihood promotion programmes for persons with disabilities and on One Health. Thaís Becker Henriques Silveira is a Master student in Human Rights at University of São Paulo (USP). Graduated in Law at Federal University of Santa Catarina (UFSC). Researcher at the Study and Research Group on Public Policies for Social Inclusion (GEPPIS/USP), at the Women’s Human Rights Clinic (CDHM/USP) and at the Center for Studies on Disability (NED/UFSC). She lives, works and studies disability and its intersection with gender, based in feminist disability studies. As a woman with disability, she believes in affection as a revolutionary and emancipatory act. Catherine Smith is a Senior Lecturer at the Melbourne Graduate School of Education at the University of Melbourne. Her work draws on sociologies of social justice and practice and philosophies of care to analyse the nexus of politics, policy and practice. With an interest in the effects of disruption, her work has focused on policies and practice of forced migration, equity and education, well-being and resilience, gender identity and new technologies. Its application in teaching, training and research encompasses theories of relationality and reflexivity which drive innovation in teaching and learning across government sectors. Louisa Smith, PhD, is a Senior Lecturer at Deakin University, Australia. Her research interests centre on the relationship between experiences of disability across the life course, complexity, social policy and social change. Her research works across the disciplines of sociology, disability studies and policy studies. Louisa leads the Care Connections stream of the Connections for life with Dementia, Global Challenge Keystone project. Louisa uses creative and arts-based methods to engage people with complex support needs, disabilities and dementia, and those who provide care.

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Tracy Smith-Carrier is an Associate Professor and the Canada Research Chair (Tier 2) in Advancing the UN Sustainable Development Goals in the School of Humanitarian Studies at Royal Roads University. Tracy’s programme of research touches upon many different fields in the social policy arena, including access to social welfare benefits, social assistance receipt, disability support programmes, food in/security, basic income, poverty, and climate justice. Dr Smith-Carrier is currently leading a Participatory Action Research team exploring how to advance knowledge and action on the UN Sustainable Development Goals in Canada and on Vancouver Island, British Columbia. Jennifer Smith-Merry is Professor of Health and Social Policy at the University of Sydney. Jen is Director of the Centre for Disability Research and Policy, a multi-disciplinary centre whose mission is to make life better for people with disability in Australia by translating research to policy and practice. Jen is lead Chief Investigator on multiple grants which aim to evaluate or develop policy and services in disability and mental health. She has skills in evaluation and qualitative methods and works closely with people with lived experience of disability. She has a strong interest in the value of lived experience in informing policy and service design. Michael Ashley Stein is a Professor and the co-Founder and Executive Director of the Harvard Law School Project on Disability, and a Visiting Professor at Harvard Law School since 2005. Considered one of the world’s leading experts on disability law and policy, Dr Stein participated in the drafting of the UN Convention on the Rights of Persons with Disabilities; works with disabled people’s organizations and non-governmental organizations around the world; actively consults with governments on their disability laws and policies; advises a number of UN bodies and national human rights institutions; and has brought landmark disability rights litigation globally. He acknowledges that Harvard University is situated on the traditional and ancestral homelands of the Massachusetts people. Antoni Tsaputra is an accomplished Indonesian scholar and disability rights advocate, who has dedicated his career to promoting disability inclusion in development. He’s currently based at Universitas Negeri Padang as a lecturer and researcher. Antoni earned his PhD from the School of Social Sciences at UNSW Sydney in 2020, where he spent four years conducting research on disability inclusive budgeting. His expertise has been widely recognized and he has been invited to present his research at a number of prestigious international conferences, including the Indonesia Update organized by the ANU Indonesia Project. Despite the challenges he has faced, Antoni’s achievements stand as a testament to his perseverance and dedication to advancing disability rights and promoting a more inclusive society. Lee Tsourvakas is a 16-year-old disabled young woman. Other than advocacy, Lee loves being a girl guide and being around other disabled young people. Lee is a member of the YDAS’s COVID-19 Working Group, who worked collectively on their narrative pieces with other group members. The Youth Disability Advocacy Service (YDAS) is an organization in Victoria, Australia, who works directly with young people with disability between the ages of 12 and 25 to ensure their human rights are being met. Francisca Valdebenito-Acosta has developed analyses of public policies related to disability and public health in Chile, and has lived the experience of disability since birth. As Research Director at Symbolon Consulting, she has studied the housing, health and subjective

Contributors  xxxi well-being gaps of people with disabilities for government and academia. She is Professor of Capabilities Approach at the Universidad de Chile, and currently a Fellow at the Center for Inclusive Policy 2022‒2023 which seeks to strengthen the implementation of CRPD especially in low and middle-income countries. Oriol Valles Codina is a Research Fellow in Innovation Policy at the UCL Institute for Innovation and Public Purpose. Catherine Kramarczuk Voulgarides is Assistant Professor of Special Education at the City University of New York – Hunter College. She received her PhD from New York University in Sociology of Education. Her scholarship examines how notions of equity, access, and opportunity are constructed in policy and law and enacted in educational practice. Her first book (Teachers College Press) in 2018 won the Outstanding Publication Award in 2020 from the Disability and Society Section of the American Sociological Association. Elisabeth Wacker conducts research on social inequality, diversity and difference, especially in the case of disabilities and disadvantage in society. One focus is on the change in care systems (prevention, rehabilitation) and social policy (inclusion, participation, ability mainstreaming). On behalf of the Federal Government of Germany, she is the Chairperson of the Scientific Advisory Board for the Reports on Participation Opportunities and Livelihoods of People with Disabilities. She has held Chairs at the Technical University of Dortmund and the Technical University of Munich, two Max Planck Fellowships as well as Visiting Professorships in Austria and Taiwan. Kuo-yu (Lisa) Wang is a Taiwanese social worker, policy maker, advocate and scholar. She has a long history of policy-related research and advocacy, and became part of the first generation of disability researchers to combine lived experience, scholarship and advocacy. Dr Wang’s work is focused on moving from a welfare focus towards rights protection, and into concrete policy and practice in Taiwan. Robbie Francis Watene is a disability advocate, scholar and leader from Aotearoa New Zealand. Born with a physical disability, Robbie has been an expert advisor to the New Zealand government on various strategies and policies and is a senior researcher at the Donald Beasley Institute, where she is Project Lead for the Disabled Person-Led Monitoring of the United Nations Convention on the Rights of Persons with Disabilities, amongst other disability rights research projects. Joanne Watson, PhD, is a Senior Lecturer and Course Director of Deakin’s postgraduate disability and inclusion program. Having worked for thirty years as a Speech Pathologist, Jo’s research explores how the UNCRPD impacts on capacity to protect and promote human rights of people with complex communication and support needs. Her current research includes supporting people with complex communication and support needs to live self-determined lives through decision-making mechanisms and individualized planning. Jo has practised, taught and engaged in research in Hong Kong, China, Australia, Ireland, Iceland and USA and is a director on the Board of Loom Arts and Management, a not for profit management agency for artists with disability.

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Yvonne Wechuli is a Research Associate of the Just and sustainable transformation graduate program at the University of Kassel, Germany. She holds a Master’s degree in rehabilitation sciences majoring in structures of the rehabilitation system and pursues a PhD on the theorization of emotions and affect in disability studies. Her other research areas include postcolonial disability studies, inclusive healthcare and participatory research. Since 2021, she has worked in the department of disability, inclusion and social participation, which has a strong focus on human rights, where she has taught on topics like livelihoods of persons with disabilities in the Global South or community-oriented independent living. Ayah Wehbe is a social researcher and community advocate. Her PhD topic at UNSW Sydney focuses on the identity and belonging of Muslim women in Australia with hearing loss. She shares her own experiences as an Australian Muslim woman with hearing loss through a social media platform called Silent Signs. Ruth Wells is a Research Fellow in the Trauma and Mental Health Unit, School of Psychiatry, UNSW, and a Clinical Psychology Registrar. Their research focuses on understanding the social and cultural processes that shape individual and community responses to trauma, conflict and displacement. They conduct participatory research with displaced communities in Australia, Turkey, Jordan, Iraq and Bangladesh with a focus on how lack of access to human rights impacts on social participation and well-being. They are on the editorial board of The Activist Practitioner, a publication for mental health practitioners which seeks to bring critical feminist and decolonizing frameworks into everyday clinical practice. Raelene West has a long history in disability advocacy. She has a PhD in Sociology and has worked for several years on various disability and aged care research studies. She is currently working as a Social Researcher at the Melbourne Disability Institute, University of Melbourne. She has publications in the areas of ableism, individualized funding models, marketization of service delivery, use of technology in service delivery and human rights. Sally Whitney is a researcher affiliated to the iHuman Research Institute at the University of Sheffield, UK. Erin Wilson is a Professor and currently the Uniting Kildonan Chair in Community Services Innovation at the Centre for Social Impact housed at Swinburne University’s Faculty of Business and Law. Professor Wilson is a leading researcher and thinker in the field of participatory social change. Seeking to influence policy and practice, her research career has focused on research that “makes a difference” through the participation of those most affected. Her work is underpinned by the design of inclusive and participatory research and evaluation methods that enable a full diversity of participation, including children and adults with diverse disabilities. Meng Ee Wong is Associate Professor at the Psychology and Child & Human Development Academic Group at the National Institute of Education, Nanyang Technological University. He teaches special education in the Master of Education (Special Education), Diploma in Special Education and Advanced Diploma in Special Education programmes.  His research interests include special and inclusive education, disability studies, assistive technology, support for students with visual impairments and teacher education. Outside his academic

Contributors  xxxiii work, Meng Ee also serves on a number of non-profit organizations including SG Enable, iC2PrepHouse and the Goh Chok Tong Enable Fund Evaluation Panel. Daryl W.J. Yang is a lawyer and Fulbright scholar who recently obtained an LLM with a specialization in public interest and social justice at University of California, Berkeley’s School of Law. He holds an LLB (First Class Honours) (National University of Singapore) and a BA (Honours) (Yale-NUS College). Daryl co-authored the Disabled People’s Association Singapore’s inaugural parallel report to the UN CRPD Committee as well as its report to the Third Cycle of Singapore’s Universal Periodic Review. Daryl’s research focuses on law and social movements, disability legal studies and criminal justice. He has been published in edited volumes and law journals including the Australian Feminist Law Journal and the Singapore Law Review. Eun-Ju Yoo is a Research Fellow in Employment Development Institutions at the Korea Employment Agency for Persons with Disabilities under the Ministry of Employment and Labor. She has PhD in public administration. Her research interests include disability employment policy and policy design, policy tool transfer from sheltered workshop to integrated employment. Mac Zamani is a 19-year-old queer and disabled youth advocate, in his final year of school. Outside of school he spends his spare time working alongside organizations to improve accessibility, inclusivity and outcomes for both LGBTQIA+ and disabled young people. Mac is a member of the YDAS’s COVID-19 Working Group, who worked collectively on their narrative pieces with other group members. The Youth Disability Advocacy Service (YDAS) is an organization in Victoria, Australia, that works directly with young people with disability between the ages of 12 and 25 to ensure their human rights are being met. Anica Zeyen is a Senior Lecturer in Entrepreneurship and Sustainability at the School of Business and Management at Royal Holloway University of London (UK). She obtained her PhD from Leuphana University Lueneburg (Germany) in 2014. Anica leads the research cluster “Disability, wellbeing and sustainable inclusion”. Her research focuses on improving societal inclusion of disabled people with a particular focus on economic participation through entrepreneurship and work. Anica engages in international research on disability. She is a disability advocate and volunteers as speaker, fundraiser and campaigner for multiple UK-based disabled people’s organizations. Honglu Zhu works at Chongqing Three Gorges Water Conservancy and Electric Power School. Her research is about youth psychology. Kuansong Victor Zhuang is Fung Global Fellow at the Princeton Institute of International and Regional Studies, Princeton University, and International Postdoctoral Scholar at the Wee Kim Wee School of Communication and Information, Nanyang Technological University. His research lies at the intersections of communications, media, and cultural studies, and disability studies, especially as it pertains to inclusion and the workings of technology. He hopes to use his research to contribute to current debates about how inclusion happens both in Singapore and around the world. Tessa-May Zirnsak is a PhD candidate and Consumer Academic at the Department of Politics, Media and Philosophy, La Trobe University, Australia.

Acknowledgements

Many people contributed to the development of this handbook, and we thank them for their generous and thoughtful involvement in bringing the book to life. The four section leads provided great depth and insight into both the process and the outcome of the chapters in each of the four sections. We extend our sincere thanks to Professor Sophie Mitra, Dr Yvette Maker, Professor Jennifer Smith-Merry, and Dr Daniel Mont. In their roles as section leads, they not only reviewed draft chapters and provided feedback to the authors, but also facilitated collaborative discussions we held during the writing stage of the book with the authors. These opened new lines of inquiry and deepened thinking for all of us. Finally, the critical engagement of all four readers as the sections were finalized and the narratives included provided an additional level of editorial rigour. The book is much stronger for their involvement, and we are so pleased they are woven into its structure. Thank you to the contributing authors for joining with us in a community of practice approach to developing the handbook. We very much enjoyed the opportunity to meet most of the authors through the series of focused conversations where we discussed concepts core to the interests of the book. In so doing, the diverse nature of the contributing authors was underlined. In terms of location, gender, disability, age, and disciplinary approach, we are an eclectic group – very much in keeping with our approach to reflecting the diversity and breadth of disability policy. The strength in this diversity is emphasized by the involvement of the narrators who bring their personal experiences of disability and policy into this academic work. We thank the people who shared parts of their own experiences with readers of the handbook in order to illustrate how policy affects life. Personal narratives ask a lot of people, and we are grateful for people’s willingness to share their knowledge and insights with us. The genesis of this idea came from our late colleague and friend Jaimsie Speeding, and we remember her contribution to the field here with respect. Research assistance was provided throughout the handbook development by Dr Jan Idle, Bella Bauer, Olivia Geehan and Nicole Hrenchir. Thank you to each of them for their persistence, rigour, and good humour. Finally, thank you to our families for their forbearance, particularly during the evenings, early mornings, and weekends as we brought the book together.

COVER ART Unearth, Jackie Saunders Jackie Saunders is a Ngarrindjeri, Wirangu, Kokatha and Kaurna painter known for her bold brushstrokes and dynamic use of colour. Describing herself as “the child of a salt water woman and a desert dwelling man” Jackie takes inspiration from the natural world and creates vivid artworks which are imbued with stories. Unearth was created in response to the minerals xxxiv

Acknowledgements  xxxv collection at the South Australian Museum as part of Tutti Arts’ project Reaching Out. “I got inspired by the agate”, says Jackie. “I like the patterns on the rocks and the colours.”

Introduction to disability policy through a human rights lens Karen R. Fisher and Sally Robinson

This book considers the impact on policy of understanding disability through a human rights framework. It argues that the current language, law and concepts about human rights are changing the way that policies are framed and implemented. The book considers how a human rights understanding of disability interacts with and influences welfare, health and economic approaches to disability. Historically, these other approaches dominated policy about people with disability and they remain influential today. These older approaches, however, are now also overlayed with a competing or complementary human rights framework, which challenges some of the historic assumptions about what disability is and the obligations of policy (Shakespeare, 2013). The extent of the interaction and influence of human rights on the other approaches to policy varies by place, time and context. In this introduction, we describe the diverse conceptual approaches to disability policy, which sometimes operate in conflict or to exclude other approaches. We make the argument for critiquing disability policy through the lens of human rights, which is the aim of the chapters in this book. This collective contribution offers a global perspective of disability policy at particular points in time and place, informed by the expertise of people with disability.

DISABILITY POLICY The book focuses on policies that are close to the lives of people with disability, including social services, housing, health, employment, education and income support (Dean, 2012). Some of these policies affect all people and some are specialist policies targeted at or intended to benefit people with disability. In this book, we call them disability policies, although of course they are also broader than that. ‘What is policy’ is a discipline in itself. The book takes the perspective of people with disability who experience policy as a process (McIntosh & Wright, 2019). The policy process includes the negotiation and writing of law, policy, procedure and practice. More immediate to the lives of people though, policy process also includes the implementation, enforcement and practice of policy. The book embraces the critical understanding of policy as the social relations between people engaged in the enactment of policy as a process. It focuses on state policy, with the inclusive notion that the implementation of state policy is often by non-state actors, including the market and community. Exploring how disability policy is enacted and experienced can address the uncontested, often ableist, assumptions that place ‘normativity’ at the centre of policy process (Van Aswegen, 2020). The exploration can challenge a binary policy approach that positions disability as other, outside and not within. How policy is written, and how problems are rep1

2  Research handbook on disability policy resented within policy, impacts on what is considered problematic or a policy problem. The problem representation in turn also shapes responses to addressing these issues (Bacchi, 2009). Disability policy is not only state-based but also involves global and international organisations. The United Nations, World Health Organization and the Organisation for Economic Co-operation and Development exert influence over disability policy (Schuster & Kolleck, 2021). The adoption of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2006 (www​.un​.org/​development/​desa/​disabilities/​convention​-on​ -the​-rights​-of​-persons​-with​-disabilities​.html) was a global watershed for reframing disability policy in a human rights framework. International organisations and United Nations agencies monitor and oblige signatories (governments) to the Convention to fulfil their obligations within national and local disability policy (Katsui & Chalklen, 2020). Disability policy has been influenced on a global scale by how disability has been conceptualised. Social and medical models of disability are the dominant lenses through which policy has been viewed. These lenses are increasingly influenced by global and human rights approaches. The medical model understands disability as an individual condition that requires care and welfare to ‘assimilate to the social norm’, and where interventions are about remedying lack (Katsui & Chalklen, 2020, p. 223). The social model views disability as a result of the interaction between people with impairments and a social world rife with barriers and limitations that constrain full participation. The focus of change is on social structures and systems to enable people with impairments to participate on an equal basis with others (Oliver, 2013). In the last decade, rights-based approaches have become more prevalent to understand the relationship between people with disability and the state. Human rights are influencing policy in ways that ‘disability policy is consistent with three dimensions: social protection, labour-market integration and civil rights’ (Tschanz & Staub, 2017, p. 1201). The impact of this change affects the positioning of people with disability as active citizens with the same entitlements as their peers.

HUMAN RIGHTS Human rights is a useful lens to critique disability policy because it encompasses both conceptual and governmental understandings of the relationship between people and states. Sociological and philosophical concepts of human rights view rights as universal, common to all persons. From these disciplines, a person’s human rights are understood as interdependent with the rights of other people, within the social context of their society. These concepts of rights interweave with related social frames of justice and distribution (Dean, 2008). Equally, from a policy or legal perspective the concepts and language of human rights speak to the obligations of the state and the responsibilities of citizens – when the state is obliged to intervene to promote or protect the rights of some people disadvantaged by the actions of others. Both the conceptual and legal application of a human rights frame can be understood as consistent with social perspectives, the social model and social relations of disability, when read with this contemporary frame of interdependence and within a social context (Lawson & Beckett, 2020). Human dignity is central to a human rights model of disability where all people are entitled to ‘equal recognition as a person before the law’ (Degener, 2017, p. 35). Human rights are unconditional, and impairment does not preclude or hinder a person’s human rights. Human

Introduction to disability policy through a human rights lens  3 rights discourse is framed around positive and negative rights, which in combination are duties to refrain, duties to protect and duties to provide (Barclay, 2019). Positive rights identify what societies must do to ensure resources and opportunities are provided for people to enjoy their rights. Negative rights are those that focus on stopping barriers and obstacles to a person enjoying their rights, such as the prohibition of discrimination (Bickenbach, 2020). Negative rights, such as anti-discrimination, are a partial solution to the activation of human rights and must be tied to positive rights. When framed in law, the placing of human rights at the centre of policy sets normative expectations of the relation between people and the state. In a particular context, these standards may be minimum standards aimed at ‘avoiding the terrible rather than achieving the best’ (Nickel in Barclay, 2019, p. 81). In other contexts, they are aspirational, with rights as yet unrealised. In relation to disability policy, they locate impairment as a ‘form of human diversity without undermining the insights of the social model and reaffirm individuals as rights-bearers’ (Yilmaz, 2020, p. 762). The UNCRPD lays out two positive rights of critical importance to people with disability, who have long been denied their human rights. These are accessibility (Article 9), the right to ‘live independently and participate fully in all aspects of life’, and reasonable accommodation (defined in Article 2), which ensures actions are taken to ensure people with disability ‘exercise on an equal basis with others all human rights and fundamental freedoms’ (United Nations, 2006, pp. 9, 4). Critically it is important for governments to adopt rights and have provisions to support rights (Heymann et al., 2020). The notion of reasonable accommodation in the CRPD is central to disability policy, where participation, in all aspects of life, is dependent upon the state meeting its obligations of accessibility and accommodation. Bickenbach (2020), in discussing the right to work in Article 27, notes that this right can only be put into operation where states fulfil the ‘reasonable accommodation’ clause. This book makes the argument that policy that affects people with disability can be informed by critiques through the lens of human rights, irrespective of simultaneous welfare, health and economics policy drivers.

WELFARE A human rights lens on welfare is a contested field of disability policy. Decisions about approaches to welfare are shaped by how we understand disability and also, importantly, the priorities and perspectives of political ideologies of the state, and notions of equality and rights. Historically, disability-specific policy emerged out of welfare concepts, from a concern for people who were poor and destitute. The roots of this framing stemmed from charitable acts of the community, religious bodies, and eventually the state. It emphasised the dependence and passivity of people with disability, and the legacy of that history remains in much policy. More recent welfare approaches are informed by human rights focus on the agency, interdependence and social context of people with disability. These recent approaches emphasise entitlement to welfare support for equal access and participation in society (Dean, 2012). Rights-based approaches to welfare consider whether the goal is equality of opportunity or equality of outcome where people with disability enjoy the same rights as other people. Ayling (2018) identifies the keys to the latter as human dignity, enablement and social justice.

4  Research handbook on disability policy Conceptual understandings of disability continue to shape policies, which are inextricably and increasingly connected to state, economic and political ideology. Just as the social model of disability brought about welfare reform to accommodate and provide financial support and care (Schuster & Kolleck, 2021), political perspectives have also shaped welfare policy. Political ideology was evident in the 1990s when welfare reforms were driven by austerity and neoliberalist agendas and shrinking welfare expenditure. States focused in the first instance on a person’s dis/ability, via ‘individualistic interventions’ and were dominated by assumptions of normativity, ‘tropes of personal independence and self-sufficiency’ (Van Aswegen, 2020, pp. 437, 439). Scholars have noted with some concern that some countries have reorientated away from accommodating the needs of people with disability through financial support and care, and toward facilitating participation in ‘work-fare’ programmes for ‘subsistence benefits’ (Beckwith, 2016, p. 147). In some Latin American states, conditional cash transfer programmes were introduced, although ‘beneficiaries remained poor, vulnerable and insecure’ (Grugel & Riggirozzi, 2018, p. 532). Some European countries have maintained a balance within disability policy across the domains of civil rights, social protection and labour market integration, in their attempts to support the rights and equality of people with disability. Similarly, some countries in Latin America have embarked on resetting welfare strategies in a post-neoliberalist approach, implementing social policies ‘as a source of protection and, potentially, a route to social and economic inclusion’ (Grugel & Riggirozzi, 2018, p. 529). Disability movements have had a tendency to avoid or dismiss claims for ‘social rights’ in favour of a focus on civil rights in earlier movements, because social rights were so closely related to disempowering welfarist or charity approaches (Degener, 2016). Feminist ethics of care challenged this dichotomy by emphasising the interdependence and normalisation of care and support needs and responsibilities (Williams, 2018). The theory was criticised for its focus on people providing care and support. The UNCRPD has more recently offered an opportunity to revisit the social, economic and cultural rights of people with disability in a manner aligned with a social or human rights model. Bringing together elements of ethics of care and human rights offers a platform to pursue social rights for all parties in care and support relationships (Maker, 2022).

HEALTH Another dominant framing of policy is medical understandings of disability, which are individually focused and seek to identify, fix or prevent impairment or difference in people’s bodies (Hogan, 2019). The impact of this frame is a focus on the individual to adapt and accommodate to the majority environment. Historically, medical paradigms and diagnostic criteria have dominated disability policy frameworks and their operation, but, paradoxically, neglect of the health needs of people with disability was and still is a common experience. Attempts to incorporate a medical understanding with the broader social models of disability have resulted in categorisations such as the International Classification of Functioning, Disability and Health (ICF), applied at the person and population level (Chan et al., 2009). The ICF includes body functions, activities and participation, and the environment. The ICF approach, or parts of the ICF model, remains the dominant framework for most Global South disability policy (Mitra & Shakespeare, 2019). Rights and policies about health, wellbeing and

Introduction to disability policy through a human rights lens  5 access to health services, shared with all people, are not dependent on a medical understanding of disability. Despite the presence of critical discussions of disability, intersectionality and ableism influencing the medical model (Shakespeare, 2013), negative attitudes toward people with disability and associated stigma remain powerful. Equity in access to adequate and appropriate healthcare is dependent on addressing and overcoming existing obstacles. These include environmental barriers such as those present in the built environment, infrastructure and technology; social barriers, gender inequality, discrimination, stigma and education; healthcare barriers, illustrated in practice, procedures, and access including availability and costs; and political barriers, such as rights, protections and empowerment (Rembis & Djaya, 2020, p. 105). The right to health is inseparable from rights to housing, healthcare and social security. The negative right to non-discrimination is central to the focus of rights to health and disability, and concerns aspects of ‘non-discrimination and equal opportunities with reference to access to healthcare structures and the relationship between poverty and disability’ (Pavone, 2017, p. 476). Pavone notes that 80 per cent of people with disability live in developing or least developing countries and that rights to health include state obligations and duty of guarantee – of non-discrimination; duty to protect – again this is about non-discrimination and issues of organ transplant or refusal to provide care due to disability status; duty of fulfilment – availability and quality of health service; duty of prevention – in which the condition of disability should not prevent health insurance assistance, or access to life sustaining of life saving practices. Looking to generate more equitable public health, Berghs et al. (2019) argue a clinical evidence approach fails to address the needs, values and preferences of people with disability. Drawing the connection between medicine, public health and policy making, they call for rethinking the hierarchies of evidence-based clinical medicine and its subsequent influence on political decision making. They outline the shortcomings of the medical model, as a deficit model, and suggest evidence with a focus on ‘how to flourish with disability [that] would provide those answers’ (italics in original) and reconceptualise public health interventions, which will not only lead to greater equality but also ensure rights to health and wellbeing (Berghs et al., 2019, p. 5).

ECONOMIC INCLUSION The economic framing of disability positions people with disability as labour market participants and consumers, urging the activation and participation of people in markets. Historically, this framing complemented the medical and welfare models, where bodily difference could be understood as the reason for exclusion from the labour market or the reason to change the body to conform, and exclusion from the labour market meant reliance on a welfare state for income support (Fraser, 1994). Feminist and other critical economic approaches that engage with justice and rights discourses emphasise broader conceptions of participation, contribution and interdependence of people, including people with disability (Danermark & Gellerstedt, 2004). In these approaches economic inclusion acknowledges the obligation of the state to redistribute income and wealth so that all people have access to adequate economic opportunities for wellbeing and partici-

6  Research handbook on disability policy pation. Policy choices about forms of income support have implications for avoiding poverty, exclusion and violence. Economic inclusion in this sense has wider implications for disability policy than just labour and consumer participation. The implications extend to accessibility of social, digital and physical infrastructure through universal design and technology and accommodations. The economic inclusion implications of policy are evident across the life course from inclusive education to entrepreneurship (Thoresen et al., 2018). Economics is often at the heart of promoting and crafting inclusive policies. Economics provides essential information for developing, implementing, monitoring and evaluating policies but when divorced from a human rights perspective it can lead to unintended consequences that undermine inclusion. Economics considerations come into play when developing inclusive policies. Globally, data shows that disability is linked to lower earnings and poverty (Palmer, 2011). It also has been shown to impose extra costs on families, both in terms of expenditures on disability-specific items, such as assistive devices, and on general items for which they often have a higher need, such as healthcare. Estimating these extra costs is challenging – especially since recent studies show how much they vary. The wide variance in the nature and scale of those costs also creates challenges for how to incorporate them into the design and delivery of social protection programmes aimed at promoting participation. Policy approaches that address the right to work have been understood as both a negative right to non-discrimination, and the positive right to employment facilitated through obligations about accessibility and accommodation (Bickenbach, 2020). Balancing these rights through policy interventions is complex. The challenge is to develop and implement policies that create ‘greater accessibility and support in the workplace’ and the market conditions that will enable these rights to be practised (Waddington et al., 2016, p. 73). Participation in employment is viewed in many countries as a marker of adulthood, autonomy and independence, with the resulting financial and material advantages (Gayle-Geddes, 2015). Access to employment has ‘material and psychological well-being’ benefits and implications for social rights, and is a route to social and economic inclusion (Bickenbach, 2020, p. 332). Limitations in access to employment, discrimination and barriers for people with disability impact across their life domains. The multiple and sometimes contradictory policies often operate at the same time. In some countries the right to employment has led to conditionality on access to welfare, and disability policy has repositioned itself away from ‘public responsibility for social welfare’ (Van Aswegen, 2020, p. 437). Importantly, and with some effect, employment activation programmes in welfare policies have led to two scenarios. On the one hand these have brought about challenges to ‘embedded institutional discrimination’, and the development of active labour market policies to include people with disability, and on the other they have threatened ‘the grounds of legitimacy for disability benefits’ (Yilmaz, 2020, p. 764). The former addresses issues of non-discrimination, accessibility and accommodation and the latter sees people with disability through the narrow prism of their labour market potential and the ultimate ‘economic success of the country’ (Katsui & Chalklen, 2020, p. 214). The combination of approaches to disability policy with economic views in mind balances the three domains of civil rights, social protection and labour market integration.

Introduction to disability policy through a human rights lens  7

POLICY CONTEXT All three welfare, health and economic frames resonate with historical and current disability policy drivers in the Global South and Global North (Shakespeare, 2013). The immediate focus on physical and material survival of people with disability has often trumped other rights, sometimes necessarily. However, human rights even in these extreme circumstances, whether driven by austerity or disaster, can inform competing policy drivers. Is policy justifiable that a child injured and seemingly orphaned in a disaster be institutionalised; or that a homeless young woman with cognitive impairment subject to repeated sexual assault be sterilised? With a human rights framing, the value base for disability policy that focuses on the person within their social context is clear. The frame positions people with disability alongside and relative to other people in relation to the state in their time and place. So in answer to the stark questions above, as other children in a disaster are placed in family-based care, children with disability can be respected in the same way; and as other young women are protected from sexual assault, so too homeless young women with cognitive impairment have that right. It is for these reasons that this book applies a human rights frame to understand the quality and implications of disability policies, whether intentionally or historically driven by human rights, welfare, health or economic values. It seeks to understand when policies are consistent with a rights approach; and when welfare, health and economic approaches incorporate a human rights understanding of disability. The chapters focus on contemporary empirical experiences of policy by people with disability. Our goal is to inform future policy, to ultimately bring the lessons of change to further the rights of people with disability in whatever their social context.

BOOK STRUCTURE The book has four parts. Parts I–IV focus on the four complementary or competing approaches to policy: human rights, welfare, health and economic inclusion. Each part includes an introductory section and chapters that cover theoretical and topical issues. The range of international authors consider policy process, outcomes and impact; Global South/North context; and contemporary issues including globalisation, pandemics and technology. Personal narratives from people with disability about their policy experiences are included in each part in the form of short essays, poems and reflections. These are integrated into the more traditional chapters. These narratives set the tone for understanding the effects of normative approaches to policy and highlight the human rights experiences to which the academic chapters respond. They emphasise valuable perspectives of people with disability whose experiences might otherwise not feature so directly in a book about policy and its effects (Clear, 2000). The four parts were guided by the editorial advisors (Sophie Mitra, Yvette Maker, Jennifer Smith-Merry and Daniel Mont), who advised on the conceptual framing of their part and facilitated reflective practice to increase quality and interaction between chapters and enable authors to meet and collaborate. All chapters were subject to double peer review.

8  Research handbook on disability policy

LANGUAGE Language to describe the experience of disability varies by place and time. The editorial position taken in this book is to use the author’s preferred term in their chapter. This preference means that people are referred to in different ways depending on the context of the chapter. The editors are Australian, where the current preferred term is people with disability. Other common terms in the book are disabled people, people with disabilities and persons with disabilities.

CONCLUSION Now is an important time to explore the contribution of human rights to disability policy. In the years since the ratification of the UNCRPD, great advances have been made not only in articulating the rights of people with disability, but also in progressing human rights in policy and practice. However, as the contributors of this book show well, this is a very uneven experience, and we have a great distance still to travel. Our aim with this book is to understand disability policy in a global context from the perspective of people with disability. The international contributions from Global South and Global North contexts bring a rich and diverse analysis of ways that disability policy affects the lives of people with disability across human rights, welfare, health and economic domains. Of course, people’s lives are not so easily circumscribed, and many of the contributions to the book reveal the interconnected nature of human rights and policy in the lives of people with disability. Nowhere is this more alive than in the narratives of people themselves. Interwoven throughout the book, these first-person accounts show the multiple (and sometimes insidious) ways that policy shapes life, but also how life can shape policy if we pay attention.

REFERENCES Ayling, P. (2018). Diversity, equality and rights. In A. Boggis (Ed.), Dis/abled Childhoods? A Transdisciplinary Approach (pp. 37–55). Springer International Publishing. https://doi.org/10.1007/ 978-3-319-65175-0_3 ​ ​ ​ ​ ​ Bacchi, C. L. (2009). Analysing Policy: What’s the Problem Represented to Be? Pearson Australia. Barclay, L. (2019). Disability with Dignity: Justice, Human Rights and Equal Status. Routledge. Beckwith, R.-M. (2016). Disability Servitude From Peonage to Poverty. Palgrave Macmillan US. Berghs, M., Atkin, K., Hatton, C., & Thomas, C. (2019). Rights to social determinants of flourishing? A paradigm for disability and public health research and policy. BMC Public Health, 19(1), 997. ​ ​ ​ ​ ​ ​ ​ ​ https://doi.org/10.1186/s12889-019-7334-8 Bickenbach, J. (2020). A human rights perspective on work participation. In U. Bültmann & J. Siegrist (Eds.), Handbook of Disability, Work and Health (pp. 331–345). Springer International Publishing. https://doi.org/10.1007/978-3-030-24334-0_17 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Chan, F., Gelman, J. S., Ditchman, N., Kim, J. H., & Chiu, C. Y. (2009). The World Health Organization ICF model as a conceptual framework of disability. In F. Chan, E. Da Silva Cardoso, & J. A. Chronister (Eds.), Understanding Psychosocial Adjustment to Chronic Illness and Disability: A Handbook for Evidence-Based Practitioners in Rehabilitation (pp. 23–50). Springer. Clear, M. (Ed.) (2000) Promises, Promises: Disability and Terms of Inclusion. Federation Press. Danermark, B., & Gellerstedt, L. C. (2004). Social justice: Redistribution and recognition: A non‐ reductionist perspective on disability. Disability & Society, 19(4), 339–353.

Introduction to disability policy through a human rights lens  9 Dean, H. (2008). Social policy and human rights: Re-thinking the engagement. Social Policy and Society, 7(1), 1–12. doi:10.1017/S147474640700396X Dean, H. (2012). Social Policy (2nd edn). Polity Press. Degener, T. (2016). Disability in a human rights context. Laws, 5, 35. https://doi.org/10.3390/ ​ ​ ​ ​ ​ laws5030035 Degener, T. (2017). A human rights model of disability. In P. D. Blanck & E. Flynn (Eds.), Routledge Handbook of Disability Law and Human Rights (pp. 31–49). Routledge. https://ebookcentral-proquest -com.ezproxy.flinders.edu.au/lib/flinders/reader.action?docID=4586232&ppg=4 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Fraser, N. (1994). After the family wage: Gender equity and the welfare state. Political Theory, 22(4), 591–618. Gayle-Geddes, A. (2015). Disability and Inequality Socioeconomic Imperatives and Public Policy in Jamaica. Palgrave Macmillan US. Grugel, J., & Riggirozzi, P. (2018). New directions in welfare: Rights-based social policies in post-neoliberal Latin America. Third World Quarterly, 39(3), 527–543. https://doi.org/10.1080/ ​ ​ ​ ​ ​ 01436597.2017.1392084 ​ ​ Heymann, J., Sprague, A., & Raub, A. (2020). Advancing Equality: How Constitutional Rights can Make a Difference Worldwide. University of California Press. Hogan, A. J. (2019). Social and medical models of disability and mental health: Evolution and renewal. CMAJ: Canadian Medical Association Journal, 191(1), E16–E18. doi.org/10.1503/cmaj ​ ​ ​ ​ ​ .181008 Katsui, H., & Chalklen, S. (2020). Disability, Globalization and Human Rights. Routledge. Lawson, A., & Beckett, A. E. (2020). The social and human rights models of disability: Towards a complementarity thesis. The International Journal of Human Rights. doi:10.1080/13642987.2020.17835 33 Maker, Y. (2022). Care and Support Rights After Neoliberalism: Balancing Competing Claims Through Policy and Law. Cambridge University Press. https://doi.org/10.1017/9781108750479 ​ ​ ​ ​ ​ McIntosh, I., & Wright, S. (2019). Exploring what the notion of ‘lived experience’ offers for social policy analysis. Journal of Social Policy, 48(3), 449–467. doi:10.1017/S0047279418000570 Mitra, S., & Shakespeare, T. (2019). Remodeling the ICF. Disability and Health Journal, 12, 337–339. Oliver, M. (2013). The social model of disability: Thirty years on. Disability & Society, 28(7), 1024–1026. doi:10.1080/09687599.2013.818773 Palmer, M. (2011). Disability and poverty: A conceptual review. Journal of Disability Policy Studies, 21(4), 210–218. https://doi.org/10.1177/1044207310389333 ​ ​ ​ ​ ​ Pavone, I. R. (2017). Article 25 [Health]. In V. Della Fina, R. Cera, & G. Palmisano (Eds.), The United Nations Convention on the Rights of Persons with Disabilities: A Commentary (pp. 471–485). Springer International Publishing. Rembis, M., & Djaya, H. P. (2020). Gender, disability, and access to health care in Indonesia: Perspectives from global disability studies. In K. H. Smith & P. K. Ram (Eds.), Transforming Global Health: Interdisciplinary Challenges, Perspectives, and Strategies (pp. 97–111). Springer International Publishing. https://doi.org/10.1007/978-3-030-32112-3_7 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Schuster, J., & Kolleck, N. (2021). Disability as a ‘new’ global social theme: The role of international organizations in an expanding global policy field. In K. Martens, D. Niemann, & A. Kaasch (Eds.), International Organizations in Global Social Governance (pp. 207–230). Springer International Publishing. https://doi.org/10.1007/978-3-030-65439-9_9 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Shakespeare, T. (2013). Disability Rights and Wrongs Revisited. Taylor & Francis Group. Thoresen, S. H., Thomson, A., Jackson, R., & Cocks, E. (2018). Meaningful social and economic inclusion through small business enterprise models of employment for adults with intellectual disability. Journal of Vocational Rehabilitation, 49(2), 161–172. Tschanz, C., & Staub, I. (2017). Disability-policy models in European welfare regimes: Comparing the distribution of social protection, labour-market integration and civil rights. Disability & Society, 32(8), 1199–1215. https://doi.org/10.1080/09687599.2017.1344826 ​ ​ ​ ​ ​ ​ ​ United Nations Convention of the Rights of Persons with Disability and Optional Protocol (UNCRPD). (2006). https://www.un.org/disabilities/documents/convention/convoptprot-e.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​

10  Research handbook on disability policy Van Aswegen, J. (2020). Disabling discourses and charitable model of disability: Labour market activation for people with disabilities, Ireland – a critical policy analysis. Disability & Society, 35(3), 435–459. https://doi.org/10.1080/09687599.2019.1634519 ​ ​ ​ ​ ​ ​ ​ Waddington, L., Priestley, M., & Yalcin, B. (2016). Equality of opportunity in employment: Disability rights and active labour market policies. In P. Blanck & E. Flynn (Eds.), Routledge Handbook of Disability Law and Human Rights (pp.  72–87). Routledge. http://ebookcentral.proquest.com/lib/ ​ ​ ​ ​ ​ flinders/detail.action?docID=4586232 ​ ​ ​ ​ ​ Williams, F. (2018). Care: Intersections of scales, inequalities and crises. Current Sociology, 66(4), 547–561. doi:10.1177/0011392118765206 Yilmaz, V. (2020). An examination of disability and employment policy in Turkey through the perspectives of disability non-governmental organisations and policy-makers. Disability & Society, 35(5), 760–782. https://doi.org/10.1080/09687599.2019.1649124 ​ ​ ​ ​ ​ ​ ​

PART I HUMAN RIGHTS Sophie Mitra and Sally Robinson

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and the 2030 Development Agenda for Sustainable Development affirm the commitment of the international community to promote the inclusion of persons with disabilities in society. The CRPD recognizes “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” (Preamble, paragraph (e)).  The purpose of the UNCRPD “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” (United Nations, 2006). As of June 2021, it has been ratified by 182 countries. There are two broad components to the implementation of the UNCRPD. The first consists in adopting laws and policies in line with the provisions of the UNCRPD and the second includes non-legal strategies towards advocacy and social change. Both aim to lead to the full participation of persons with disabilities in society by mainstreaming disability in development strategies. The UNCRPD recognizes that persons with disabilities include those “who have long-term physical, mental, intellectual or sensory impairments” and who encounter barriers which hinder their “full and effective participation in society on an equal basis with others” (Preamble, recital (e) and Article 1). The 2030 Agenda for Sustainable Development is inclusive of disability and of persons with disabilities. Its Sustainable Development Goals (SDGs) consider disability as a cross-cutting issue and include it explicitly in five SDGs, including education, growth and employment, inequality, accessibility of human settlements, and data, monitoring and accountability. The SDGs identify persons with disabilities as a disadvantaged group. These developments around the UNCRPD ratification and disability in the 2030 Agenda reflect the human rights approach to disability. Yet, disability through a human rights approach continues to receive very little attention in the field of policy. While there has been research on social protection policies targeting individuals with disability and their families, limited 11

12  Research handbook on disability policy work has considered disability in other areas of policy such as education, health, healthcare, employment, transportation, culture and more. Realizing the rights of persons with disabilities requires policies that are based on concepts that are in line with a human rights approach to disability, and reflect various aspects of the lives of persons with disabilities and their diversity. The COVID-19 pandemic may have reversed hard-won progress in implementing the UNCRPD and the 2030 Agenda by affecting the health, community supports, information and communication technologies, education, employment and poverty status of persons with disabilities.  Guided by the human rights perspective, this section of the edited volume aims to bring disability more prominently into the policy discourse and to facilitate the generation of new empirical evidence and debates about disability-inclusive policies globally.

THE HUMAN RIGHTS PERSPECTIVE  The human rights approach provides moral principles that are the foundation of policy. As noted by Quinn and Degener (2002, p. 14),  Human dignity is the anchor norm of human rights. Each individual is deemed to be of inestimable value and nobody is insignificant. People are to be valued not just because they are economically or otherwise useful but because of their inherent self-worth…. The human rights model focuses on the inherent dignity of the human being and subsequently, but only if necessary, on the person’s medical characteristics. It places the individual centre stage in all decisions affecting him/her and, most importantly, locates the main “problem” outside the person and in society.

The human rights approach provides moral principles that are the foundation of policy. The human rights perspective is a paradigm shift away from the medical model. The medical model (or individual model) considers disability as a problem of the individual that is directly caused by a disease, an injury or other health conditions, and requires prevention interventions or medical care in the form of treatment and rehabilitation. The major policy concern of the medical model at the political level is to provide healthcare and rehabilitation services.  The human rights perspective is related to the social model, which sees disability as a social creation. With the social model, disability is not the attribute of the individual, but is instead created by the social environment and thus requires social change. It has become an essential tool to analyze oppressive and discriminatory structures in society. While the social model was central to the development of the CRPD, there are differences between the social model and the human rights approach to disability. For instance, Degener (2016, p. 3) notes that …whereas the social model merely explains disability, the human rights model encompasses the values for disability policy that acknowledges the human dignity of disabled persons. Only the human rights model can explain why human rights do not require absence of impairment.

Besides, under the social model, anti-discrimination legislation was seen as the policy solution and provided a shift away from welfare policies. “‘We want rights not charity’ was and still is a slogan to be heard around the world from disability rights activists” (Degener, 2016, p. 5).  The scope of the human rights perspective is broad and goes beyond anti-discrimination law, which is only part of the solution. In addition to civil and political rights, it also covers economic, social and cultural rights. Both sets of rights, civil and political rights, on the one

Part I: Human rights  13 hand, and economic, social and cultural rights, on the other, are covered under the UNCRPD. It recognizes that people need more than political participation and not being discriminated against. They also need housing, schooling, jobs and cultural participation.

CHAPTERS IN PART I The chapters in this first part of the book seek to understand when policies are consistent with a rights approach. They present different ways to frame and operationalize a human rights approach to contemporary policies with a focus on how people with disability in the Global North and South experience them. The chapters in this section are divided into three broad themes: framing inclusivity in research and education and international frameworks for disability policy; advocacy in disability policy; and the engagement of disability policy with laws and rights instruments in nations and regions. The ideas expressed in many of the chapters overlap, demonstrating the complex and dynamic intersections between human rights in theory and practice. The section opens with a personal narrative by Mia Boonen about finding joy as an artist and a disabled person. Mia turns the “personal is political” inside out, inviting readers to think about what it might take to create a world which offers more than an “unpoetic bare minimum” and where “demanding joy and artistry isn’t seen as frivolous,” but respectful of the importance of culture and shared humanity for human rights. Mia’s narrative invites us to think broadly about the place of policy in human rights dialogue. The first set of chapters in Part I emphasize the importance of people with disability taking a central place in the design, development and implementation of policy and rights-focused activity. Biggeri, Ciani, Griffo and Deepak articulate both the roles and the potentiality of emancipatory approaches in challenging power structures to create more equitable and rights-focused policy. Gómez-Carrillo de Castro explores ways that co-creation and knowledge production can take account of power structures to positively influence social policy. Using a disability justice framework, Gesser and de Mello show the contributions made by an academic center in Brazil to the field of accessibility in academic and political events. Em Dewhurst’s narrative sits alongside these chapters, offering a reflection on the impact of narrow representation and negative media tropes, and the ways this disempowers and marginalizes people with disabilities at a broad social level. Widening the lens, the following chapters use a range of methods to consider how participatory and disabled-led approaches affect human rights monitoring and engagement. Pinto and Cardim argue that participatory indicator-based frameworks are key to assessing progress in the realization of the human rights of persons with disabilities everywhere, using the CRPD as a focal point of analysis. Francis Watene, Mirfin-Veitch and Asaka take this idea further in applying article 33.3 of the CRPD, which requires civil society to be involved in monitoring the implementation of the rights of people with disabilities. Alongside these chapters, Honglu Zhu’s personal narrative demonstrates how transformative knowledge about the UNCRPD can be for identity and action. Of course, there are many implementation gaps in human rights frameworks. Ferri and Leahy’s chapter on the right of people with disability to participate in cultural life moves further into specific life domains, highlighting the discordance between aspiration and implementation in a critical policy and rights sphere.

14  Research handbook on disability policy The second thematic strand of chapters in this section address advocacy in disability policy. Several authors examine disability rights and policy in contexts of unrest and discord. Khawam and Akerkar draw on their research in Lebanon to illustrate how policy agendas are progressed in unstable and insecure states which cannot or will not invest in people with disabilities. Huque uses the example of Malawi’s new and progressive codified disability rights legislation to illustrate and examine how advocates work in different spaces to progress rights. Yang, Zhuang, Goggin and Wong question the effectiveness of human rights framings on pragmatic disability policy application in the Singaporean context, and Wang and Pan similarly draw conclusions about the distance between rights aspirations and policy implementation in Taiwan. Chien-Ju Chou brings these important issues to life in her narrative about the intersections between disability rights movements, policy and access to universal services. The final group of chapters in this section focuses particularly on the engagement of disability policy with laws and rights instruments, and the consequent effects on the access that people with disabilities have to their human rights. Amitsis and Marini analyze European disability policy through the framework of EU human rights, drawing out ways that both soft and hard policy instruments address statutory provisions on human rights. The following chapter by Marutama, Tsaputra and Pradipta complements this broad analysis in their application of how historical and legal framing constrains the Indonesian policy context. Prince uses the Accessible Canada Act as a more hopeful example of how nations can develop disability policy within human rights frameworks. Tim Chan’s narrative enlivens this discussion, showing very clearly that young people who communicate without speech bring much to the conversation about human rights. Bregaglio Lazarte, Camino Morgado and Constantino Caycho provide a critique of the CRPD implementation frameworks and monitoring mechanisms in Latin South and Central America. The narrative about affection and emancipation by Karla Garcia Luiz, Laureane Marília de Lima Costa, Mariana Lúcia Agnese Costa e Rosa and Thaís Becker Henriques Silveira shines a light on how embodied rights are in everyday life for women who draw political and personal strength together. Bringing the section to a close, Musengi explores interesting ways that local, indigenous and decolonizing knowledges are being brought to bear in ways that challenge dominant policy constructs and create rights-informed alternatives.

REFERENCES Degener, T. (2016) A human rights model of disability. In P. Blanck & E. Flynn (eds) Routledge Handbook of Disability Law and Human Rights (pp. 31‒49). Routledge, London. Quinn, G. & Degener, T. (2002) Human Rights and Disability: The Current Use and Future Potential of United Nations Human Rights Instruments in the Context of Disability. United Nations, New York and Geneva. United Nations (2006) Convention on the Rights of Persons with Disabilities 2006. United Nations, New York and Geneva.

1. Narrative 1: Mia’s piece – Candice, “Defying Gravity” and I Mia Boonen

Tobin Siebers said it best: “Disability is not, therefore, one subject of art among others. It is not merely a theme. It is not only a personal or autobiographical response embedded in an artwork. It is not solely a political act. It is all of these things, but it is more” (2010, p. 20). My cane comes to every room with me. Her name is Candice, or Candy when she’s dressed up like a candy cane for the holiday season. She’s known for falling off the side of my chair, helping me walk around and generally just being “a character” in all the best ways. Candice, a notebook and my pen: the three things I need in every room. Sometimes I think the Venn diagram of “finding joy as an artist” and “finding joy as a disabled person” is a circle. I’m a theatre maker by trade, which basically means that I’m a professional silly person. As both an artist and an advocate; I love to pull phrases like “creative boundaries” and “artistic limitations” when I really mean “low budget” and “a government that doesn’t care about my community”. Turning inequity into quips is a survival tactic. I am forced to see the world differently – to paint inequity a different colour and call it pretty – and sometimes that can be fun. It’s a way of taking back control when I know that I am owed more by this world. Nonetheless, I find my ways through. I make adjustments, advocate for myself and I struggle and get angry when I refuse to be ignored. But I deserve more than that. I need more than that. In early 2020, I had the absolute pleasure of working with Kate Sulan from Rawcus – an all-abilities theatre ensemble that has been creating good theatre for several decades. Kate began her time with us by posing three questions: 1. What’s your name? 2. What song is stuck in your head? 3. What do you need? I could answer the first two easily: “I’m Mia Boonen, and “Defying Gravity” has been thudding in my brain for the past 24 hours, no matter how many times I tell it to stop.” But figuring out what I need? That’s a tougher question. Of course, I need to be safe, so I need Candice with me. Preferably, I need a chair or a soft place on the floor to work from too. But “feeling safe” is the bare minimum when I decide if I’m going to make art somewhere. Who says that access needs must only be practical? Why can’t they be poetic also? Yes, I need a room with a ramp. I need Candice by my side. I need to feel excited and encouraged and interested. I need room to think boldly and to speak my mind. I need to laugh! I need to discuss the podcast I just listened to about trees because I think it might just be the spark of my next show. I need “Defying Gravity” to get out of my head. I need collaborators, co-conspirators and community. 15

16  Research handbook on disability policy Both art and advocacy keep me in a constant state of dreaming. I spend my days imagining better things for the world and trying to make them happen. But the “better world” I’m imagining isn’t better because I can get into the hypothetical room where I could hypothetically make hypothetical art. I imagine a world where there’s no hierarchy of needs – where demanding joy and artistry isn’t seen as frivolous. I imagine a world that gives me more than an unpoetic bare minimum. I need Candice, yes. I need a ramp to the door and a bathroom downstairs. But I also need community, generosity and my notebook and pen. And I won’t stop until I get them.

REFERENCE Siebers, T. (2010). Disability Aesthetics. University of Michigan Press.

2. Knowledge production and human rights enhancement: the role and potentialities of emancipatory disability research Mario Biggeri, Federico Ciani, Giampiero Griffo and Sunil Deepak

1. INTRODUCTION The promotion of inclusive development entails the full and effective participation of everyone, including people with disabilities, in all decision-making processes, as is stressed by Art. 4.3 of the Convention of the Rights of Persons with Disabilities (CRPD – UN Enable, 2006). In order to foster the ability of people with disabilities to exert some degree of influence on these processes, it is necessary to develop meaningful opportunities for people to collect, analyse and disseminate information about their lives and the societies in which they live. This chapter discusses the extent to which emancipatory disability research (EDR) qualifies as a tool to foster the promotion of inclusive development. EDR supports people with disabilities and disabled people’s organisations to produce knowledge about their own lives and the different barriers (social, economic and cultural) that impede their full and effective participation in society. The core tenet of EDR is that people with disabilities act as co-researchers to progressively gain control during all steps of the research process, including the identification of research questions and elaboration of research methodology and data collection, analysis and dissemination. Throughout this process, academic researchers act as facilitators and providers of technical assistance. EDR has its roots in Paulo Freire’s (1996) and Augusto Boal’s approach to emancipation (Boal, 2006). They linked emancipation to a person’s capacity to analyse their lived reality, and they found that marginalised persons possess sharp analytical skills as long as they have the opportunity to put these skills into practice. Both Mike Oliver (1992, 1996, 1997), a theorist of the social model of disability, and Colin Barnes (2003) observed that socioeconomic research processes directly developed by people with disabilities could be considered as a means to empowerment through enhanced knowledge and strengthened collective action. EDR is clearly linked to and coherent with the overall approach proposed by the CRPD, especially where it relates to monitoring the implementation of the Convention, as stated in Art. 31 and Art. 33. Here, the CRPD requires state parties to collect adequate data and to promote the full participation of people with disabilities and disability organisations during the monitoring process. This kind of research contributes to the collection of quantitative and qualitative data to ‘identify and address the barriers faced by persons with disabilities in exercising their rights’.1 EDR can thus be used not only to map inequalities related to disability but also to describe and analyse inclusion/exclusion mechanisms and processes from the perspective of people with disabilities themselves. In this sense, EDR as an approach to disability 17

18  Research handbook on disability policy research can complement tools such as the question sets developed by the Washington Group on Disability Statistics (WG),2 which were intended to standardise disability measurement in surveys and national census. While WG question sets provide quantitative, standardised and comparable data on disability, EDR processes can provide context-based information. The main objective of the chapter is to propose a sound and flexible method to conduct EDR. To illustrate our proposed EDR method we will build on more than one decade of intense fieldwork with people with disabilities and their organisations. We describe nine case studies across six different countries: India (two case studies), Liberia, Mongolia, Mozambique, Palestine (three case studies) and Tanzania. The case study results demonstrate how EDR can influence decision-making processes. Following this introduction, the chapter will proceed as follows. Section 2 describes the theoretical roots of EDR. In Section 3, a flexible method to structure EDR processes is proposed. Section 4 presents a set of case studies and practical EDR experiences, highlighting the strengths and weaknesses of each. To conclude, possible implications in terms of further research and policies will be provided.

2.

THEORETICAL FOUNDATIONS OF EDR

2.1

Emancipatory Research: A General Evolution

As research (particularly social research) is a social act (Barton, 2005), it involves a wide range of individuals, groups and organisations. Interactions among these actors are permeated by ethical and procedural challenges as well as political dilemmas linked to power relations. Emancipatory research emerges from the development of several converging strands of works, the common origin of which lies in an overall dissatisfaction pertaining to the power structures embodied in research processes, with particular attention given to social and economic research. The work of Brazilian philosopher and pedagogist, Paulo Freire, has strongly inspired the development of emancipatory approaches to social research. Starting with his fieldwork in São Paulo’s favelas, Freire (1996) realised that marginalised people possess sharp analytical skills as long as they are provided with opportunities to investigate their own realities and reflect upon their living conditions. Interestingly, pedagogues working in vastly different, although still marginalised, contexts reached similar conclusions. As an example, Lorenzo Milani, an Italian priest and educator who worked in deeply deprived mountain areas in central Italy, conducted simple research activities on poverty and exclusion, with students from poor families (Mayo, 2007). At the time, Freire (1996) and Boal (2006) pioneered this kind of methodology through their work in the field of education (Justo and Erazun, 2005). Their approaches highlighted that conventional social research more or less implicitly presents the point of view of dominant social actors (usually wealthy, able-bodied, heterosexual males). Emancipatory approaches, on the contrary, propose horizontal, non-hierarchical, subject–subject relationships between researchers and research subjects wherein all participating parties are held in equal importance and are interchangeable as problem-solvers, thinkers and learners (Glassman and Erdem, 2014). Research is thus conceived of as a fundamental component of the work of ‘emancipation’ and ‘conscientisation’ to develop skills, improve problem-solving abilities,

Knowledge production and human rights enhancement  19 increase self-determination and gain greater influence over decision-making processes, thanks to stronger ownership and control of knowledge production processes (Boog, 2003). Emancipatory approaches are undoubtedly linked to the general development of participatory methods. The success of participatory methods has its roots in the work of Robert Chambers (1983), who strongly challenged traditional social research and, in particular, the relationship between social research and development project programmes. Chambers’ critique identified several biases in conventional data collection and analysis procedures that result in persistent ethnocentric attitudes on the part of experts, researchers and practitioners. Going beyond mere critique of traditional approaches, the stream of research initiated by Chambers contributed to the development of alternative toolboxes: rapid rural appraisal (Chambers, 1981, 1983) and participatory rural appraisal (Chambers, 1994). These are, perhaps, the most well-known examples of standardised procedures for conducting participatory research. The existence of these well-established and flexible methodological packages decisively strengthened the link between and contributed to the success of participatory methods and practical actions (Macdonald, 2012). While both Freire and Chambers worked predominantly within developing contexts, it is possible to find anticipations of emancipatory approaches to social research in the social and economic debate concerning high-income countries as well. Italian activist and philosopher Antonio Gramsci developed the concept of hegemony (Gramsci, 2007), which establishes a bi-directional relationship through which social actors are able to influence both current ways of thinking and decision-making processes. Notably, control of knowledge production processes might be a precondition to achieving social change and reshaping power relations. In addition to directly influencing Freire, Gramsci significantly impacted the work of labour sociologist Raniero Panzieri, whose fieldwork involving the Italian industrial working class highlighted the relevance of practices such as co-research and self-research (Panzieri, 1971), whereby a full assessment of exploitation, discrimination and deprivation mechanisms is possible only if subjects (i.e. industrial workers) are involved as primary actors within research activities. 2.2

The Development of EDR

In the early 1990s, Mike Oliver coined the term emancipatory research. In doing so, he offered a rich perspective with which to overcome the limits of conventional research on disability. Oliver (2002) found three main limitations to disability research: (1) the perspectives of people with disabilities were insufficiently reported; (2) there was a lack of impact on decision-making processes; and (3) it neglected the political dimensions of disability. Oliver thus proposed a deeper and more direct participation on the part of people with disabilities in the research process, to produce ‘collective accounts of collective experience’ within emancipatory research (Oliver, 2002, p. 4). Nowadays, the term ‘emancipatory research’ is used in diverse ways by persons working with different marginalised population groups. This kind of approach has strong linkages with intersectionality (Noel, 2016). That is why researchers tend to define emancipatory research according to the targeted group(s). When focusing on disability, it becomes quite clear that the emergence of EDR, besides its clear links with the previously described developments in the field of social research, can be traced back to major changes in the way disability has been approached, both socially and

20  Research handbook on disability policy politically. In particular, we refer to (1) the progressive success of the social and interactional model of disability and (2) the elaboration and wide adoption of the CRPD as the main global standard for addressing human rights, thus conceiving people with disabilities as right holders and the lack of their full and effective participation to the society as a violation of human rights (Degener, 2016). According to the social model of disability, people with disabilities are disabled by the barriers that characterise the context (Shakespeare, 2006). The interactional model of disability stresses the interaction between the impairment/health condition and the context the person is living in (Gill, 1987). The direct consequences, in terms of disability research, are that medical data on impairment prevalence provide only part (often the less interesting part) of the picture (Oliver, 2004). Disability research is expected to simultaneously address different aspects of disability (WHO and WB, 2011), including an effective analysis of barriers and facilitators. To this effect, EDR is a coherent and valuable tool, as it may allow for descriptions of inclusion/ exclusion, social, cultural and economic mechanisms from the perspective of people with disabilities. The adoption by the United Nations of the CRPD in 2006 marked the global espousal of the social and human right-based approach to disability as well as an acknowledgement of the existing link between disability and the much wider issue of human rights promotion and safeguarding. Among several relevant issues, the CRPD underscores the role of people with disabilities and disability organisations in decision-making processes (Art. 4.3). This includes the direct involvement of people with disabilities and disabled people’s organisations (DPOs) in monitoring the implementation of the convention. Considering CRPD monitoring mechanisms (Art. 31, 33 and 35), people with disabilities and DPOs are expected to contribute both by acting as counterparts of national governments and by elaborating shadow monitoring reports. This clearly entails a full and effective involvement in terms of data collection, analysis, dissemination and use (UN Enable, 2007). Once again, EDR demonstrates a clear structural coherence with this scenario. Notwithstanding the fundamental flexibility of EDR, eminent scholars delimited its range of action by identifying six useful principles (Stone and Priestley, 1996): (i) it should be rooted in the social model of disability; (ii) there should be acknowledgement of its political dimensions; (iii) it should promote self-emancipation and empowerment along with the removal of barriers; (iv) it should emphasise the collective dimension of individual experiences; (v) it should use a plurality of methods for data collection and analysis, according to the needs of the people with disabilities involved; and (vi) people with disabilities and DPOs should exercise the highest possible degree of control over the research process. This last point marks a clear distinction between emancipatory and participatory research. Emancipatory research is part of a broader category of participatory approaches but acknowledges that mere participation is not enough to connote the emancipatory nature of a research process. An EDR exists only if an explicit strategy is implemented to allow people with disabilities to have the highest possible level of control over the research process, which entails control over the definition of the research question, design of the research tools, analysis, and use and dissemination of results (Barnes, 2002).

Knowledge production and human rights enhancement  21

3.

STEPS FOR PLANNING AND IMPLEMENTING COMMUNITY-BASED EDR: A PROPOSAL

Hereunder, we introduce a specific approach to EDR planning and implementation, to be located in communities and involve groups of people with disabilities, with the external support of academic and other experts. We term this a community-based EDR (CB-EDR). As EDR is inherently context-based, it is generally hard to define it in terms of research tools and/or subjects covered by the research. An EDR could potentially address all the social, cultural and economic processes that hamper or foster the full and effective participation of people with disabilities in society. As such, the identification of topics to be covered by an EDR process should be the prerogative of the involved people with disabilities and/or DPOs. Research tools and methods should be identified in coherence with research questions and the existing constraints in terms of time and resources. Other ex ante limitations are not identifiable. EDR is often perceived in terms of qualitative research, but a combination of qualitative and quantitative methods could provide a deeper understanding of the chosen topic and enable triangulation of results. All in all, as was observed by Barnes (2003), the most important characteristics of emancipatory disability research are ‘the problems of accountability, the role of the social model of disability, the choice of methods, and empowerment, dissemination and outcomes’ (p. 3). The existing literature on EDR provides clear ethical and political principles for its conduct (Stone and Priestley, 1996; Traina, 2016; Chown et al., 2017). It is, however, more difficult to find operational hints on how to structure EDR processes. In general, it is possible to identify three broad categories of an EDR process: ● analysis of personal experiences of disability conducted by and/or with people with disabilities (Mahipaul, 2015; Sharma, 2015); ● case studies on DPOs, self-help groups, etc. that are conducted by people with disabilities (Kincaid, 2013); and ● mainstream research that is inclusive of people with disabilities (Klara, 2014). This may include the participation of people with disabilities as co-researchers, or it may be an evolutionary process by which those involved develop the necessary skills to carry out research together, with incremental changes bringing about an increase in the direct involvement of people with disabilities in all stages of the research process (Callus, 2016; Chown et al., 2017). This chapter summarises more than a decade of field research directly conducted by the authors, presenting common traits, strengths, weaknesses and lessons learnt. These experiences were previously described in other papers and research reports (Deepak, 2011; Deepak et al., 2014; Biggeri and Ciani, 2019a, 2019b; Biggeri, Ciani and Ortali, 2019; Ciani, D’Erasmo and Nitti, 2022), and a nine-step method to conduct a CB-EDR is here proposed. This procedure covers the entire lifecycle of a research project, with the objective being to conciliate two main achievements of CB-EDR, namely (i) the elaboration of a sound research output and (ii) the promotion of empowerment and emancipation at the individual and collective levels (Deepak, 2020; Deepak et al., 2014; Biggeri and Ciani, 2019a). The ambition of this chapter is, therefore, to capitalise on a structured field experience by contributing to the existing literature on EDR and going into some specific issues such as the link between EDR, the CRPD, collective action of people with disabilities and the link with the community.

22  Research handbook on disability policy The method comprises the following steps: (1) Preliminary phase: initial identification of the potential research location and its characteristics through the mobilisation of people with disabilities and DPOs. It entails a preliminary engagement of other relevant stakeholders and a first analysis of the financial and human resources to be mobilised. (2) Identify the EDR operative group(s) to be involved in conducting research. A group of people with disabilities (often linked to DPOs or other civil society organisations) is mobilised; while the level of commitment is likely to be heterogeneous across group members, the emergence of leaders is a typical achievement of the EDR process. (3) Identify an external research advisory committee whose role would be to (a) provide additional support, (b) act as ethical committee and (c) place EDR within wider academic debate. (4) Define emancipatory research questions and elaborate the EDR plan. DPOs and people with disabilities are expected to lead the identification of relevant barriers and related analytical approaches, while professional researchers provide technical advice. Following identification of the research question(s); a preliminary draft of the research protocol should be jointly elaborated. In most cases, the research questions are focused on barriers and/or facilitators. However, it is important for disabled co-researchers to reflect on the factors that drive and maintain marginalisation processes, in order to elaborate and expand on solutions for improving their participation to the community. Research topics and questions are chosen through group discussions, which allows each participant to freely express their point of view and relate their experiences. This is a decisive step to substantially challenge the power structures embedded in social research actions as it implies the prominence of people with disabilities in establishing priority areas of interest. The different points raised during the discussion process are (usually) ranked in order of relevance and feasibility (e.g. through the construction of problem trees). (5) Design and organise training for the co-researchers who will conduct and implement research processes. Training needs and objectives should be identified in accordance with research protocol, which might entail both key skills for teamwork (including conflict management) and technical skills strictly linked to research protocols. Training sessions could be led by professional researchers who would facilitate the learning process through participatory methods that draw on different tools. (6) Co-design research tools: an EDR toolbox should result from cooperation between academic researchers and people with disabilities/DPOs. (7) Identify supporting mechanisms for the implementers of EDR. For instance, for participants with disabilities, it might be necessary to provide specific adjustments to certain research procedures to ensure that all proposed activities are fully accessible to all. For people with visual impairments, it would be crucial to make documents available in large-size print and braille (Deepak, 2011), while other adjustments would be required for those who are D/deaf or intellectually impaired. (8) Analyse and scrutinise research results: the collected information is expected to fill gaps in knowledge and understanding of the mechanisms that prevent people with disabilities from fully and effectively participating in society. While the process of data analysis is usually facilitated by professional researchers in cooperation with trained participants,

Knowledge production and human rights enhancement  23 it is essential to present key findings to all participants and communities. Where results may be difficult to understand, it is important to present them in clear and accessible terms using non-technical language and concepts. Lastly, it is crucial to stimulate debate as this could bring to evidence unexpected explanations of results as well as underexplored analytical perspectives. The analysis process can also include discussions on possible actions to mitigate and/or overcome any barriers. (9) Community and other stakeholder engagement: an EDR process ought to involve all actors that are expected to actively participate in an inclusive community. This might include local institutions, trade unions, religious and political organisations, etc. If possible, stakeholder engagement should be structured in accordance with a multilevel perspective: i.e. it should target actors at local, national and international levels. Community engagement includes communication and advocacy activities aimed at fostering cultural change or which may influence debate and policy making. (10) Evaluate the EDR process: the evaluation of EDR processes should be structured in light of its objectives. This implies two levels of evaluation: the first focuses on the quality of scientific output, while the second focuses on impact in terms of empowerment at the individual (i.e. the impact of the co-researchers) and collective levels (i.e. impact on collective action and influence on decision-making processes).

4.

CB-EDR IN PRACTICE: LESSONS LEARNT FROM NINE CASE STUDIES

This section will briefly introduce nine CB-EDR case studies the authors were involved in, and which illustrate the opportunities, limitations and potentialities of EDR. Table 2.1 summarises the main features of these nine case studies. Each of these CB-EDR projects were developed in the framework of international cooperation projects,3 and all involved people with disabilities, DPOs, professional researchers and NGOs. Despite the impossibility of providing detailed analysis of each case study, it is of interest to present a summary of common traits and lessons learnt from a decade of intensive fieldwork. The CB-EDR cases presented show that once control over the research process was given to people with disabilities, and they started discussing the different models for understanding disability (medical, social and human rights), the research focus gradually shifted from impairment (i.e. aetiology and taxonomy of impairments) to the barriers preventing people with disabilities from full and effective participation in different domains of life. Among some groups of people with disabilities, such as blind and D/deaf persons, the shift from medical to social and human rights models tended to be much more emphatic compared with people with disabilities with chronic and more degenerative conditions, where the medical domain is structurally more relevant because medical interventions are continuously required to maintain a level of functioning (Deepak, 2020). The flexibility and adaptability of the CB-EDR procedure can be seen in its application across the diversity of the case studies. We tested CB-EDR processes in six countries across different continents, including Asia, the Middle East and North Africa region and sub-Saharan Africa. Moreover, the different case studies addressed a wide range of life domains, all with

24  Research handbook on disability policy Table 2.1 Year

CB-EDR case studies CountrY

India [Mandya and 2010–2011 Ramanagaram districts, (Karnataka)]

2013

India: Bidar [Karnataka]

Palestine [Nablus, 2016–2017 Ramallah, Bethlehem] 2017

Palestine [Nablus, Ramallah, Bethlehem]

Main target

Main FoCus

Qual Quant tools tools reFerenCe(s) (Y/n) (Y/n)

Barriers to participation in community life People with and access to disabilities Y (children, adults basic services (including and elderly) community-based rehabilitation) People with Analysis of disabilities who violence, Y experienced discrimination violence and victimisation Barriers to access Young women to education and Y with disabilities to decent job People with disabilities identified among DPOs senior activists

Accessibility of the education system

N

Participation in Mongolia Young men and community life [Urban and women with Y 2018–2019 sub-urban areas disabilities of Ulaanbaatar] Access to decent Young men and job and vocational Mozambique training Y 2019–2020 [Maputo, Beira women with disabilities and Pemba] Access to People with education and Tanzania Y disabilities and 2019–2020 other basic [Iringa district] family members services Participation in Liberia community life [Bong, People with and employment Y 2019–2021 Nimba and disabilities (including Grand Gedeh self-employment) counties] Access to People with Palestine education and disabilities [Nablus, 2021 vocational Y identified Ramallah, (ongoing) training Bethlehem and among DPOs senior activists Gaza] Source: Authors’ elaboration.

Y

●Deepak et al., 2013 ●Deepak et al., 2016

Y

●Deepak et al., 2014

Y

Y

●ARCO and RIDS, 2016 ●Biggeri and Ciani, 2019b ●ARCO and EDUCAID, 2017 ●Biggeri and Ciani, 2019a

Y

●Deepak, 2020 ●Deepak et al., forthcoming

Y

●ARCO and AIFO, 2019 ●Ciani, D’Erasmo and Nitti, 2022

Y

●ARCO and IBO, 2021

Y

●The CB-EDR is ongoing

Y

●The CB-EDR is ongoing

Knowledge production and human rights enhancement  25 a focus on the barriers faced by different types of people with disabilities. Usually, life domains were selected according to the co-researchers’ priorities; barriers to participation in employment, education and vocational training were topics more often targeted when young people with disabilities were involved (see the Palestine, Mozambique and Mongolia case studies in Table 2.1), whereas the involvement of disabled women generally resulted in a deeper focus on the relationship between gender and disability. Collectively, the results of these CB-EDR case studies can be easily linked to the CRPD articles, and as a consequence, CB-EDR proves itself a valuable tool to monitor the implementation of the CRPD itself. CB-EDR was also used to focus on specific forms of multiple discrimination, such as the barriers encountered by those who experience both gendered and disability-related discrimination (see ARCO and EDUCAID, 2017). Other intersecting forms of discrimination or disadvantage that were addressed (and addressable) through CB-EDR in the case studies entail discrimination linked to age, specific forms of disability (e.g. albinism in Mozambique and Tanzania as reported in ARCO and IBO, 2021, and Ciani, D’Erasmo and Nitti, 2022) and locality (e.g. rural versus urban). In other words, through CB-EDR, disability is not addressed as a static label but as a multifaceted phenomenon that is part of human lives and the heterogeneity of humankind, which is coherent with the social and human right-based approach to disability, as embraced by the CRPD. CB-EDR often proved to be a valuable tool to explore extremely sensitive issues such as violence. For instance, the CB-EDR conducted in India, which focused on emotional, physical and sexual violence towards people with disabilities, was highly effective in identifying a prevalence of violence and uncovered a problem that was previously perceived as too big and too difficult to deal with. The CB-EDR conducted in Mongolia focused (among other topics) on barriers to sexuality for men and women with disabilities (Deepak, 2020). Notably, the disabled women who were involved as co-researchers, building on research results, succeeded in involving the Department of Social Welfare in the establishment of a dedicated phoneline to provide advice on sexual and reproductive health. Comparatively, discussions among male co-researchers achieved limited results. The identification of different fieldwork tools to fit the ‘toolboxes’ in the CB-EDR case studies was mainly driven by the chosen research questions. Both qualitative and quantitative tools were used. Co-researchers with disabilities often perceived the use of quantitative questionnaires as challenging, and so ad hoc training was required. Nonetheless, the CB-EDR conducted in Palestine and Mozambique was characterised by successful quantitative surveys based on in-person structured interviews (with samples up to 300 observations). Additionally, the use of life-course interviews (LCI) is a common feature of CB-EDR (Halvorsen et al., 2017), and LCIs are often identified as valuable tools given their ability to present retrospective analyses about barriers and how these shape life trajectories (ARCO and EDUCAID, 2017). Visual research tools were used in CB-EDR processes in India, Liberia and Mongolia (Deepak et al., forthcoming; Deepak et al., 2016). In Mongolia, co-researchers invited people with disabilities to use photography and videos to document the barriers they faced in their daily lives: as an example, one participant with cerebral palsy documented his experience of using a public bus, while another captured the barriers he had to deal with being a wheelchair-user and living in a slum area. The considered case studies highlight a relevant limitation and vulnerability of the proposed CB-EDR approach. CB-EDR processes proved to be more effective where the ground was previously prepared by the rooted presence of DPOs and other organisations working on

26  Research handbook on disability policy the promotion of the rights of people with disabilities. Indeed, the action of DPOs and other organisations tend to create an enabling environment where people with disabilities are more likely to enjoy the opportunity to develop both hard and soft skills. This was a problem, particularly in Northern Mozambique and Liberia, where a non-negligible share of participants experienced difficulty when handling primary research tools. These problems opened the perspective of two additional workstreams to further improve CB-EDR. First and foremost, a context-based critical analysis of CB-EDR processes is needed to understand how to lift the barriers to participation affecting the CB-EDR processes: this might entail a critical re-thinking of tools, timing and preparation of CB-EDR processes. Second, it might be worthwhile to work on skills and capacity development by adapting the training and co-creation process to the different contexts. By way of example, in Northern Mozambique, it was necessary to invest in capacity building early in the project to strengthen co-researchers’ self-confidence in handling interpersonal relationships (Ciani, D’Erasmo and Nitti, 2022). During the CB-EDR conducted in India and Liberia, it was more difficult to involve people with disabilities who faced significant social stigmatisation, such as persons with leprosy-related disabilities and epilepsy, in group dynamics with co-researchers who experience other impairments; during meetings and training sessions, they tended not to mix with others and made limited contributions to the discussions. Working to improve group dynamics and peer-learning could be key to overcoming such difficulties. In India, Mongolia and Liberia, the CB-EDR involved a small number of people with disabilities with limited or no formal education. However, the peer-support of colleagues with more formal education enabled them to participate in data collection and other CB-EDR activities. In general, researchers must pay attention that participation is full and effective for everyone and that conflicts and divergences are allowed to emerge and to become a subject of discussion. If needed, the research staff should include professionals with a specific background in the management of groups and of peer-to-peer dynamics; DPOs are often the best source to find this kind of skill (Griffo, 2007; ARCO and EDUCAID, 2017; Ciani, D’Erasmo and Nitti, 2022). People with cognitive and psychosocial disabilities tended to experience greater difficulties when it came to participating as co-researchers. The CB-EDR conducted in Maputo, Mozambique, can be considered as a success in this regard. The key, in this instance, was to foster an enabling relational environment within the group of co-researchers, which allowed the additional barriers usually experienced by persons with cognitive and psychosocial disabilities to be lifted. DPO involvement also proved to be a crucial success factor for CB-EDR: First, DPOs acted as crucial intermediating entities between professional researchers and disabled co-researchers, as they facilitated dialogue and mutual learning. In all our CB-EDR case studies, DPOs supported the mobilisation of co-researchers and identified experienced people with disabilities who were able to act as tutors during the research process. In other instances, co-researchers were directly identified by the DPOs among senior activists (often members of the DPO’s board). For example, in the case of the CB-EDR conducted in Palestine in 2017, a group of senior DPO activists became co-researchers. Second, DPOs provided necessary expertise to allow for full participation of all co-researchers, by improving and adapting research tools and training sessions to make them more accessible (e.g. by translating questionnaires and other tools into braille or by offering sign language translation during training sessions). DPOs and other civil society organisations

Knowledge production and human rights enhancement  27 handled key logistical issues linked to training sessions, data collection (including the related mobility issues) and other steps of the CB-EDR process. Third, DPOs were key to capitalising upon human resources, which were strengthened by participation in CB-EDR. For example, the CB-EDR conducted in India, Liberia, Palestine, Mozambique and Mongolia facilitated the emergence of a new generation of disabled leaders and activists. One co-researcher in India subsequently contributed to the creation of a state-level federation of DPOs, while two other co-researchers together founded a new DPO for promoting sport activities among people with disabilities. Meanwhile, the ongoing CB-EDR in Palestine benefits from the support of disabled trainers and field coordinators who, as a result of being engaged as co-researchers in past CB-EDR projects, acquired the technical and interpersonal skills needed to play major roles in future projects. Fourth, DPOs were key to converting the empirical results acquired through CB-EDR into knowledge exchange outputs that can impact decision-making processes (e.g. central and local government policies, NGOs activities, etc.) and lead to policy changes. In this way, DPOs along with other stakeholders are ideal candidates for influencing policy makers, designing new services and raising awareness through research. However, whenever DPOs were less structured (as was the case for the CB-EDR conducted in Tanzania), the emancipatory dynamics of the process were impacted, and so professional researchers and other organisations (e.g. NGOs, trade unions) were required to play a more active and direct role to achieve the goals of the research. During the CB-EDR conducted in India, Mongolia and Liberia, researchers had opportunities to meet with authorities to question them regarding the barriers they identified. In Mongolia, research took place in the capital city, Ulaanbaatar, where the researchers visited national-level institutions and, on two occasions, were able to question government ministers. In India, the 2010–11 research project occurred at district level, with the co-researchers able to obtain the commitment and support of district authorities. In Palestine, people with disabilities who had been trained as co-researchers subsequently organised and held training sessions for local authorities and civil servants that focused on accessibility and inclusion. These initiatives helped the people with disabilities involved in CB-EDR to strengthen their mobilisation and advocacy skills, and assets for DPOs. In other settings, the level of accountability of public authorities was weaker, and this impacted the capacity of CB-EDR to influence decision makers. In Liberia, for example, the engagement of local authorities was less strong, due in part to there being limited resources available for public institutions and their representatives. By bringing together persons with different kinds of disabilities, and by enabling them to critically examine the barriers that exist within institutions, the CB-EDR process exposed the DPOs themselves to the scrutiny of researchers. This allowed barriers within the DPOs to be identified and promoted greater inclusion. For example, the CB-EDR process in Liberia identified the lack of accessibility of DPO offices by showing that, while a large number of women with disabilities were DPO members, almost all the institutional roles were held by men. It also showed that persons with hearing and speech disabilities, psychosocial disabilities, intellectual and learning disabilities and epilepsy and leprosy-related disabilities were either missing or extremely underrepresented among DPO members. The tenth and last step of the proposed CB-EDR procedure (i.e. the evaluation of the process) needs to be further explored and systematised. Qualitative participatory assessments of the CB-EDR process and their impact in terms of empowerment were conducted among the young disabled women who participated as co-researchers in the Palestinian case study

28  Research handbook on disability policy (ARCO and EDUCAID, 2017), while quantitative assessments were also attempted in India, Liberia and Mongolia (Deepak, 2020). However, the assessment process was neither standardised nor sufficiently structured. In particular, the evaluation should not be limited to individual empowerment but extended to a more comprehensive assessment of the impact on the actual enjoyment of rights: this should entail a multilevel approach that targets the context as well, by clarifying whether and how the CB-EDR process contributed to challenge existing power structures and, in the last instance, to reshape the collective perception of what people with disabilities is allowed to be, to do, to hope, to claim and to become. Forthcoming CB-EDRs will hopefully be more focused in this regard. Nonetheless, preliminary results suggest that the empowerment process works across the following three levels: (1) Individual: individuals become more confident, articulate and assertive in decision-making and in venturing out into new surroundings. By inviting people with disabilities to become co-researchers, the CB-EDR helps them to interact with others, move beyond familiar confines and gain a better understanding of their legal rights and entitlements. Thus, the impact on personal characteristics is usually the most visible sign of empowerment. (2) Community: interpersonal relationships between disabled co-researchers and their families, neighbours, peers and colleagues and communities: the final assessment of the CB-EDR processes featured numerous cases of people with disabilities whose autonomy had increased dramatically thanks to their participation in CB-EDR (e.g. some obtained a driving licence or became autonomous in self-care activities). Moreover, as a result of participating in data collection processes, they were exposed to and navigated unfamiliar relational dynamics and social roles (e.g. conducting interviews with professionals or civil servants, facilitating group discussions, etc.). (3) Institutions: people with disabilities were encouraged to interact with different institutions, such as village councils, schools, health services, the police and judicial systems, which resulted in an improved capacity to understand institutional roles in terms of citizenship right. Instances within the CB-EDR processes where disabled co-researchers had greater interaction with institutional representatives, and so were able to instigate actual change, had greater impact. For example, DPOs involved in CB-EDR in Mongolia reported that an increased number of institutions made themselves available to establishing fruitful dialogue.

5. CONCLUSION The analytical perspectives that are used to conceptualise disability have dramatic consequences in terms of how disability research is structured, which actors are involved in research processes and what are their roles. For example, where a biomedical approach to disability is adopted, research activities tend to focus on impairment, epidemiology and the cost of disability for individuals and society; in these instances, people with disabilities are considered to be sources of information at most, while the research is conducted and managed by professional researchers (Stone and Priestley, 1996). The use of the social and human rights approach to disability, which is coherent with the CRPD, entails a shift in research focus from impairment to the barriers and facilitators that

Knowledge production and human rights enhancement  29 shape our societies. In this approach, the direct participation of people with disabilities within research processes constitutes an essential component of the research itself (Griffo, 2018). In this sense, EDR establishes plausible strategies to structure research processes in full coherence with the CRPD and the social and human rights-based approach to disability. The goal of the CRPD is that people with disabilities come to recognise and enjoy full citizenship rights. In other words, people with disabilities are not merely the objects or beneficiaries of policies, programmes or projects, but rather they are subjects, rights holders and drivers of the changes needed to promote the implementation of a social and human rights-based model of disability. EDR can thus be a tool for the promotion of the human rights of people with disabilities in three main ways. The first is the analysis of the barriers and facilitators characterising our societies and hampering the full enjoyment of human rights for people with disabilities. The second is the increase in the quality and effectiveness of the collective action of people with disabilities and their organisations. The third is the promotion of changes in terms of policies and culture in the direction of the full and effective participation of people with disabilities in society. This chapter proposed and presented a specific procedure for CB-EDR, which has been developed at the community level in various developing countries. In CB-EDR, people with disabilities without academic experience or specific expertise are trained and supported to develop field research, through the lens of a social and human rights-based model of disability that focuses on different kinds of barriers that characterise various life domains. By examining the presented procedure and proposed case studies, several interesting points emerge, which we summarise as follows: First, considering its extreme flexibility, CB-EDR appears to be a valuable tool that could contribute to monitoring the effective implementation of the CRPD in different contexts by favouring the direct participation of people with disabilities and DPOs (coherent with Art. 31 and Art. 33). Second, the full participation of people with disabilities and DPOs can produce policy innovation. As such, CB-EDR can be used not only to identify barriers but also to plan appropriate interventions to dismantle them and, so doing, to progress towards full and effective implementation of the CRPD. As an example, and for precisely this reason, the Italian Agency for Development Cooperation officially adopted CB-EDR as a planning tool for disability mainstreaming (AICS, 2018). Third, as evidenced by its record of academic publications (Deepak et al., 2013; Deepak et al., 2014; Deepak et al., 2016; Biggeri and Ciani, 2019a, 2019b; Biggeri, Ciani and Ortali, 2019), CB-EDR has the potential to produce sound scientific outputs. Fourth, participation in CB-EDR processes strengthens DPOs in terms of both their capacities and ability to collect and analyse information and, thus, of their being considered a valuable counterpart by public authorities and other actors (e.g. other NGOs, trade unions, etc.). Fifth, despite the need to develop more comprehensive cross-level approaches to analyse the impact of CB-EDR on the actual level of rights enjoyment experienced by people with disabilities, participants within CB-EDR processes and existing preliminary evidence (mainly limited to individual empowerment) suggests that impact is positive and multifaceted. Nonetheless, a more rigorous impact assessment of the empowerment promoted by the participation in EDR processes can be considered among the more urgent developments of EDR. In particular it could be interesting to understand more about CB-EDR’s tangible and intangible impact on

30  Research handbook on disability policy the extent to which different contexts foster (or hamper) the full and effective enjoyment of human rights for people with disabilities. In summary, CB-EDR is a promising strategy that favours dialogue between different and often too distant actors and stakeholders. People with disabilities, public institutions, research institutions, DPOs and other civil society organisations are all concerned actors for whom CB-EDR can provide a valuable arena in which to facilitate dialogue, structure mutual exchange and bring about change in culture and practices. Academic researchers and DPO representatives may play a bridging role in sharing the learning and understanding gained from CB-EDR processes with a wider academic audience, as well as with policy and decision makers. This process of documenting and translating community action is necessarily imperfect – only a part of all that happens at a grassroots level can be documented and translated – yet, it has the potential to provide a deeper understanding of the powerful forces and catalysts of change that could be stirred into motion.

NOTES 1. 2. 3.

Start of endnote. See Art.31 of the CRPD. End of endnote. Start of endnote. See: https://www.washingtongroup-disability.com/. End of endnote. Start of endnote. The Italian Agency for Development Cooperation (AICS) and EuropeAid were among the international funding agencies. End of endnote.

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3. A journey together – co-creation and experiential knowledge of people with intellectual disabilities in social policy María Gómez-Carrillo de Castro

1. INTRODUCTION This chapter presents a case study of a participatory research project with people with intellectual disabilities in Spain and the epistemological value of participatory research in social policy. The Convention on the Rights of Persons with Disabilities (CRPD) changed the conceptualization of people with disabilities and brought gaps in social policy to light. Decades of activism and mobilization of people with disabilities and their organizations preceded the adoption of the CRPD (Sabatello, 2013). Researchers and Disabled People’s Organizations have pointed out how research contributes to the stigmatization and marginalization of people with disabilities, which led to renewed calls for participatory research within disability research. In a separate trend, co-design in policy making and public services has gained attention and importance in policy production and implementation, to bring policy and research closer (Metz et al., 2019; Needham, 2008). Experiential knowledge is recognized as a valuable source to produce much-needed data and insights to inform social policy, and to transform it to become compliant with the CRPD.

2.

DISABILITY AND SOCIAL POLICY

There is a growing movement towards the use of evidence in policy making and evaluation (Supplee & Metz, 2015) and for scientists to engage with the world outside academia. Co-creation is conceived as a way of bringing science and policy closer (Sienkiewicz & Mair, 2020). One of the reasons to use participatory research is to improve the quality and significance of the research, and to produce a socially robust and holistic understanding of the problem (Schmidt et al., 2020). Participation can be key in filling in gaps in policy design, implementation and evaluation. Social policy has often treated people with disabilities as a separate and homogenous group, from a deficits and medical perspective rather than based on capacities and equal opportunities (Waddington, 2001). People with disabilities are beneficiaries of social policies as a distinct group and as a transversal one. For instance, people with disabilities have a higher unemployment rate than the general population (Luciano et al., 2014), are more likely to live in poverty (Banks et al., 2017) or to have housing problems (United Nations General Assembly, 2017). Social policy struggles with different challenges to address this group’s needs, e.g. excluding people with disabilities from mainstream social policies, using a medical model in its design or the challenge of operationalizing disability. Under these premises, research has overlooked 33

34  Research handbook on disability policy people and compartmentalized experiences, treating them as unrelated when in fact they are not or reducing them to a single identity, which is problematic (DiQuinzio & Young, 1997). Further, it has contributed to more stigmatization and marginalization of disabled people (Arstein-Kerslake et al., 2020). Research has particularly missed out on the knowledge and experiences of people with intellectual disabilities (Nind, 2017). This population is heavily affected by discriminatory policies, e.g. institutionalization or disability certificates based on a medical model of disability (Devandas Aguilar, 2017). People with intellectual disabilities can, through research, contribute to highlighting gaps or stigmatization in policies and practices. For example, the pandemic has brought to light the deficits of the current care system (Brennan et al., 2020). A participatory action research project was conducted in China to assess the needs of people with disabilities and older people during the COVID-19 pandemic and to advocate for change (Yue et al., 2020). A Canadian participatory publication highlights the structural inequities enhanced by the pandemic and its policy management (Fudge Schormans et al., 2021). Research can be useful in monitoring the implementation of the CRPD and in the identification of barriers to full enjoyment of rights. For instance, the Irish Inclusive Research Network (IRN) produced a report on going to the doctor (IRN, 2019), which documents psycho-emotional disabling attitudes that constitute barriers to the full and effective enjoyment of the right to health. Their report Our homes (IRN, 2015) on the right to independent living illustrates different rights violations in care home settings and provides insights into independent living skills, preferences and forms of support available to people, and showcases what desirable support looks like. These two reports show how inclusive research can provide evidence in social policy issues, on barriers to full enjoyment of rights and on what type of practices can be done to remove these barriers.

3.

THE VALUE OF PARTICIPATORY KNOWLEDGE PRODUCTION IN SOCIAL POLICY

Social policy is considered an applied social science (Spicker, 2011), which attempts to meet human needs for wellbeing. Its design and implementation will affect how human rights are shaped and upheld. Social phenomena cannot be separated from the social environment (Spicker, 2011) and are better understood as situated knowledge (Schram, 2012), which calls for the expertise of those with lived experience. Flyvbjerg introduced the Aristotelean concept of phronesis applied to social sciences (Flyvbjerg, 2001), which was picked up by Spicker to apply specifically to social policy (Spicker, 2011). Phronetic science is less concerned with establishing the causes of a certain issue, but rather replying to the question ‘What works?’ It does not seek to establish causes or correlations but has a more practical approach to addressing the needs and issues of a community. Phronetic social science rejects the fact–value distinction prevalent in mainstream social science and offers contextualized knowledge that is appropriate to a particular setting and to a specific problem (Schram, 2012). Spicker’s proposal on phronesis considers experiential knowledge as a source of valid knowledge and of generalizability (Spicker, 2011). Phronesis, as a type of applied knowledge, differs from techne in its interest in judgement, as to reply to the question what one should do in this situation. Participatory

A journey together  35 research, in combination with human rights, can provide for that experiential knowledge with moral and legal guidelines, as explored below. Awareness has grown about the complexity and the urgency of the problems addressed by public policy (Hudson et al., 2019; Sienkiewicz & Mair, 2020). Policy failures and policy implementation gaps receive more attention, and implementation at a local level is deemed to be very context dependent (Hudson et al., 2019). As a response to this, the literature emphasizes the need for policy makers to confront the ‘messy engagement of multiple players with diverse sources of knowledge’ (Davies et al., 2008, in Hudson et al., 2019, p. 3). Participatory research, in contrast to traditional research methodologies, avoids monopolizing information and knowledge in the hands of experts and supports the view that participants hold valid knowledge on the issues and how to approach them, which can be triangulated with the knowledge produced by other actors (Francés García, 2016). Triangulation is considered to be a ‘key criterion for the conversion of research conclusions into policy and practice’ (Brown, 2001, p. 146). While traditional research and policy design tries to reduce elements, is linear or believes that the past will replicate in the future (Mueller, 2020), in participatory research participants bring along all complexities, worldviews and awareness. Participatory research necessarily contextualizes the issues, a much-sought request when considering social policy problems (DiQuinzio & Young, 1997). It constitutes problem-driven research, connecting theory and practice in a better way (Schram, 2012). Thus, it is an appropriate tool to tackle policy responses or programme designs that do not consider a particular group’s preferences or that are based on research that has failed to accurately reflect information about the context and people in which they will operate (Cornwall & Jewkes, 1995; Wolff, 2011). When researching social policy, the focus falls on human agency or on structures that influence behaviour (Greener, 2002; Musolf, 2003). Participatory research can, on the one hand, reveal or study structures or barriers to full enjoyment of rights, and, on the other, promote change in participants (Peralta, 2017). It constitutes a methodology that allows for a focus on both structure and agency. In addition, both quantitative and qualitative methods can be pursued under a participatory paradigm. Co-creative approaches are considered to be a unique research approach that serves as a platform for critical reflection, ongoing improvement and debate on ethics and legitimacy (Metz et al., 2019). Ethics and legitimacy have been problematized by disability and social policy scholars. Flyvbjerg calls on researchers to put power at the core of their analysis, as he considers that power produces knowledge and vice versa (Simmons, 2012). In a similar line, participatory research, in all its modalities, problematizes where power lies and how it is relinquished. Praxis has also been highlighted within disability studies (Nind, 2017) and how it can create knowledge communities, in which people with intellectual disabilities are engaged in generating knowledge. Participatory research rejects the notion of objective knowledge and is based on the construction of knowledge through human interpretation and interaction. Participants’ input to the research design, from the research question to the research tools (survey, questions, materials) and analysis and outputs, enriches the research, making it closer, understandable and relevant to the community (Peralta, 2017).

36  Research handbook on disability policy

4.

PARTICIPATORY RESEARCH AND PEOPLE WITH INTELLECTUAL DISABILITIES

People with disabilities have historically been excluded from conducting research but constituted as the object or subject of research (Oliver, 1992). In addition, research on people with disabilities on many issues about their lives is often done under the medical and individual model. This constitutes a form of discrimination and oppression (Stone & Priestley, 1996), as it continues to consider the person as ‘deficient’, ‘needing treatment or rehabilitation’. Research approaches framed around participation with people with disabilities include participatory research, emancipatory research, community-based participatory research (CBPR) (Nicolaidis et al., 2011), participatory action research, inclusive research (Walmsley et al., 2018), Disability Rights Promotion International (DRPI) and human rights-based research (Arstein-Kerslake et al., 2020). These methodologies problematize the treatment of people with disabilities as the object of research. Additional common themes are the requirement to share power and hand over control of the research to people with disabilities, monitor power relations, a political commitment for change based on the social or human rights model of disability, a focus on the environment, structures and context rather than on the individual and an understanding of research as a tool for change. Researchers cannot remain neutral but have a duty towards disabled people in their quest for social justice. Participatory research is used loosely to refer to the involvement of a community, in this case people with disabilities, in the definition of the research question and the different research phases. The task of participatory research is to educate the community on how research is done, empower it to be able to decide over the research process, create spaces for deliberation and decide (Francés García, 2016). The involvement of people directly affected by the issue at stake will provide a better understanding of the issue and potentially improve the implementation of solutions. CBPR is based on the principles of considering the average citizen (participant) as useful rather than an obstacle or problematic. The community (participants) should be at the centre of the project. CBPR is a form of sharing power and becoming accountable to the community (Peralta, 2017). Involvement in participatory research facilitates the process itself of researching and is a way of incorporating the community’s reflections and creativity in the research (Peralta, 2017). DRPI developed a collaborative methodology to monitor the implementation of the CRPD. It proposes a triangulation of data to obtain a full picture of patterns of human rights violations across different life domains (Rioux et al., 2019). The data collected covered a collection and analysis of daily life experiences of people with disabilities, the review of national legislation and its compliance with the CRPD and media monitoring to represent societal attitudes towards people with disabilities. DRPI places great value on the research process as a means for building capacity and empowering people with disabilities as well as fostering collaboration. DRPI moves away from measuring to letting participants define the standards and indicators which are used in the research process, which is responsive to different cultural and social contexts. The benefit is that being interviewed by peers creates a relationship of trust and enhances the understanding on the issue of the researchers – advocates (Rioux et al., 2019). Emancipatory research puts researchers at the service of people with disabilities (Stone & Priestley, 1996). Researchers must commit overtly to the social model of disability, surrender objectivity, commit to research that empowers people with disabilities or eliminates barriers

A journey together  37 and conduct research that is led or controlled by people with disabilities and their community (Stone & Priestley, 1996). Some disability studies scholars have criticized participatory research methodologies for not being committed to the empowerment of people with disabilities, for instance, in the case of research involving people with intellectual disabilities based on normalization theory (Arstein-Kerslake et al., 2020). Inclusive Research Inclusive research specifically focuses on the participation of people with intellectual disabilities. It is less well known than participatory research (Nind et al., 2016). Some authors describe it as an umbrella term for a range of research approaches, including participatory, emancipatory or action approaches with people with intellectual disabilities, who are included in different capacities: interviewers, advisors, life historians and autobiographers (Walmsley, 2001). Walmsley and Johnson described inclusive research as that which ‘involves people who may otherwise be seen as subjects for the research as instigators of ideas, research designers, interviewers, data analysts, authors, disseminators and users’ (Walmsley & Johnson, 2003, p. 10) and propose the following characteristics to define inclusive research: ● the research problem is owned by disabled people; ● it is conducted to further their interests and address issues which matter to them and ultimately lead to improving their lives; ● it is collaborative, involving people with learning disabilities in the process of doing the research and accessing and representing their views and experiences; ● people with learning disabilities exert some control over process and outcomes and are treated with respect by the research community; and ● the research question, process and reports are accessible to people with learning disabilities. (Walmsley & Johnson, 2003, p. 64) The IRN has defined inclusive research as: ● ‘Creating a place where people with intellectual disabilities are supported to do their own research. ● Sharing power: People with disabilities are part of decisions at all stages of the project ● Building a research community in Ireland.’ (Inclusive Research Network, n.d.) Particularly interesting from this definition is the idea of building a research community and the creation of a space where people with intellectual disabilities are supported to participate and be part of the decision-making process at all stages. This idea is also present in human rights-based participatory research (HRBPR). Inclusive research draws from the social model of disability and normalization theory. Normalization theory has been criticized due to the lack of commitment to the social model and partly shows the difficult standing of inclusive research within disability studies. According to Walmsley, normalization puts the responsibility for change on non-disabled people, rather than letting people with intellectual disabilities lead the change. In this sense, it shares a limitation with emancipatory research, as one cannot emancipate another person nor attribute a ‘positive social identity’ without the person with intellectual disabilities’ own will and action to take these steps (Walmsley, 2001). Walmsley points out that normalization promotes participation in research, but on the non-disabled

38  Research handbook on disability policy academics’ terms, who retain a central role in advocacy, and give people with intellectual disabilities a social valued role. Under the normalization model, inclusive research projects have been criticized for co-opting disabled researchers into assisting the agenda of service providers (Finkelstein, 1999, as cited in Walmsley, 2001). Human Rights-Based Participatory Research HRBPR builds on the lessons learnt from the other participatory research methodologies and addressing its critiques (Arstein-Kerslake et al., 2020). This methodology uses human rights law to structure the research design and objectives, and the strategies from participatory research to enable participation. Social issues are explored from a rights perspective. Academic neutrality is relinquished and the researcher’s role as an agent of social change is highlighted. The key difference from previous methodologies lies in its use of research as a tool for advocacy and social change because it is based on legally binding human rights instruments and is overtly committed to social justice, the social model of disability and human rights. This methodology engages people with disabilities at all stages of the research. The CRPD provides guidance and a framework to prevent the marginalization of people with disabilities within research and to produce rights-based research in any field (Arstein-Kerslake et al., 2020). It is based on the following principles: ● It is initiated and led by people with disabilities, or through the disability community via direct commissioning, policy documents, dialogue between the disability community and researchers, as a response to findings in research or to findings from the CRPD Committee or the Special Rapporteur on the Rights of Persons with Disabilities. ● It is designed to be led or guided by the disability community, which must hold control or be involved at all stages of the research, from the research question to its dissemination. The involvement can be in the form of ‘research fellows’ or an advisory panel of people with disabilities. Involvement of disabled people based on their experiential expertise must be remunerated. ● It responds to a rights concern of the disability community. This means that the research takes a human rights approach to disability, supports, and enforces the realization. The research should respond to a current, historical or potential rights violation, contribute to social change and empower people with disabilities. ● The research outputs are directly addressed to the rights concerned and are returned to the disability community in an accessible format (Arstein-Kerslake et al., 2020). The protocol set forward by this methodology also includes ethical considerations. Informed consent must be based on full legal capacity in line with the CRPD. This includes providing support and information in accessible formats for participants and allowing for enough time to understand the information. Consent is conceived as an ongoing process and should be facilitated in different formats (Arstein-Kerslake et al., 2020). There is already significant experience conducting participatory research with people with intellectual disabilities around the world (Nind, 2017), with examples from Iceland (Traustadóttir & Johnson, 2000), Ireland (Salmon et al., 2018), the UK (Nind, 2017), Australia (Johnson et al., 2002), China (Yue et al., 2020), Canada (Fudge Schormans et al., 2018) or Spain (Puyalto et al., 2016). Research topics include the right to health (Frankena et al., 2019), the right to independent living (Salmon et al., 2019), needs during the pandemic (Yue et al., 2020), violence experi-

A journey together  39 enced by women with intellectual disabilities, histories of women with disabilities exploring different aspects of their lives, including self-advocacy, parenthood and identity (Traustadóttir & Johnson, 2000), the history of learning disabilities at the Social History of Learning Disability Research Group, Open University, UK, sexuality and relationships (Johnson et al., 2002). All these topics are relevant to social policy, in its conception and implementation. Challenges The benefits of participatory research are nowadays undisputed (Goodley, 2010, p. 27), yet challenges in its use remain. Participatory research requires more time (Cornwall & Jewkes, 1995), is messy and calls for flexibility (Seale et al., 2015). First, ensuring that people with disabilities own and author the research or making sure it leads to effective change (Darretxe et al., 2020; Goodley, 2010) or ensuring that the research questions disablism is difficult. Researchers proposing participatory research need to reflect on who benefits from the research (Darretxe et al., 2020) and if they are effectively relinquishing power (Cornwall & Jewkes, 1995). The literature also warns against making a career out of doing research with people with disabilities (Goodley, 2010). Further, ensuring that the research is inclusive (Goodley, 2010) and accountable to people with disabilities during all phases can also be difficult. In the past, it has been rare to include people with high support needs (Nind, 2014). In general, if the researcher has no prior relationship with people with disabilities, it may prove difficult to reach out to potential co-researchers. In the case of people with intellectual disabilities, this can be particularly difficult due to gatekeeping by organizations and service providers (Nind, 2014). Providing sufficient information and capacitation, if needed, to enable participation, can also be a challenge, especially during the phase of research analysis (Darretxe et al., 2020). It requires both academic researcher and co-researchers to learn from each other, and it is important to continuously question whose knowledge is being considered – the researchers, experts or people with disabilities (Goodley, 2010). Lastly, ethics committees may constitute a barrier by not approving participatory research based on a stigmatized conceptualization of people with disabilities as ‘vulnerable’ and ‘incapable of giving consent’ (Mietola et al., 2017).

5.

USEFUL STRATEGIES TO INCLUDE PEOPLE WITH INTELLECTUAL DISABILITIES IN RESEARCH AND POLICY DESIGN

Participatory research places special value on for whom the research is produced, why and how it is produced (Francés García, 2016). This section will focus on different aspects of how participatory research with people with intellectual disabilities is produced. All duties listed below are initiated by the academic researcher but can be assumed by the participants-researchers (Peralta, 2017). Recruitment People with intellectual disabilities are rarely involved in research or in higher education projects (Nind, 2017). Most people will not be familiar with the academic environment and

40  Research handbook on disability policy requirements. Recruiting people with intellectual disabilities can be tricky depending on the context. Organizations supporting people with intellectual disabilities may act as gatekeepers, or ethics committees with little understanding of disability may impede including people with intellectual disabilities as co-researchers, under the assumption of automatic vulnerability (Arstein-Kerslake et al., 2020). Often, academic researchers tend to fall back to the people they know or with whom they have already collaborated (Puyalto et al., 2016; Walmsley & Johnson, 2003). Most researchers with intellectual disabilities arrive to research through self-advocacy (Yue et al., 2020) or develop this activity further, which can constitute a somewhat privileged group. An ongoing relationship with the disability community, along with the establishment or support of research networks or groups can be very helpful to tackle these barriers, as advocated by the IRN. This contributes to building up trust and being available to explore different research themes. Research centres across the world have created different forms of maintaining ongoing relationships with people with intellectual disabilities, through research networks (IRN), supporting an inclusive research group directly (Universidad de Girona, Spain, or University of Limerick, Ireland) and creating research groups which include people with intellectual disabilities (Social History of Learning Disability Research Group, Open University). Opportunities to engage in research are highly valued by people with intellectual disabilities (Fudge Schormans et al., 2019). Training Training is useful to develop adequate research skills and team building (Strnadová et al., 2014; Walmsley & Johnson, 2003) but has also been criticized for risking losing participants’ unique experience (Nind et al., 2016). Despite this, participatory research has always had an educational component (Francés García, 2016) and the academic researcher is responsible for facilitating a collective learning process (Peralta, 2017). The researcher will need to provide information and decision-making support depending on the participants’ background and experience in advocacy and research. Different academics engaged in participatory research have proposed training programmes to familiarize people with intellectual disabilities with research (Fullana et al., 2017; Nind et al., 2016; Strnadová et al., 2014). Training can include asking an external researcher to deliver the training to present different perspectives and to expand the network. Reflexivity Reflection on the process is fundamental (van de Sande & Schwartz, 2017). The researcher must examine her role, why she is pursuing a research question or a specific point and how her views and position influence the advice, guidance and input she gives. Reflection can help identify whether the researcher is contributing to disablement through paternalistic behaviour. The promotion of reflection is essential to unearth a better understanding of the issue, rather than simply listening to individual voices and experiences (Peralta, 2017). Unquestioned commitment to a particular understanding of disability and disability research can prevent reflexivity, which in turn will affect the possibility of examining who actually controls and defines the research process (Watson, 2020). Therefore, while clarity in the commitment to conduct research with people with disabilities needs to be sought from the beginning,

A journey together  41 including under which area and framework, academic researchers need to be aware that the struggle may be personal and collective. Reflexivity contributes to making sense of collective reality and personal reality and identifies whether the researcher is pushing a specific agenda when she structures participation in certain ways. Reflection also allows the space to learn from failure (Boman & Yeo, 2020). Participatory research is challenging, as tasks go beyond traditional research skills, e.g. group facilitation, promotion of participation or ensuring accessibility. Negative experiences can become a hindrance in a participatory research project and need to be addressed adequately. Exchange with other researchers or critical friends as well as self-reflective activities aid the process of making a negative experience into a learning opportunity and re-framing the experience (Boman & Yeo, 2020). Structuring Participation The role of the expert changes in the process of research in a participatory project, which assumes the role of a facilitator (Francés García, 2016; Peralta, 2017). The academic researcher has the task of coordinating the research, facilitating the dialogue and encouraging participation (Peralta, 2017). The use of methods and techniques needs to be adapted to the participants, and each action should have a clear purpose, rather than a sequence of methodological requirements that may seem meaningless to the participants (Francés García, 2016). HRBPR includes the requirements of accessibility and to facilitate decision-making processes, by ensuring that information is always available, and that the person gets support to engage and decide. The academic researcher must reflect on what accommodation to provide, and how to facilitate the options for people to engage with their preferred form of support. This can be negotiated at the beginning of the project and adjusted when needed. It includes using clear communication strategies, such as visual aids, structured participation through different dynamics and opportunities, feedback forms, easy-to-read information or video recordings. One of the criticisms of participatory research is the claim that by surrendering the power to people with disabilities, the researcher turns into a support person. However, while the researcher may assume accessibility and facilitation duties, she does not necessarily become a person’s or a group’s support person. Power is also retained in more subtle ways. Reflexivity on the purpose of the researcher’s actions and flexibility is needed, as the role of the academic researcher is renegotiated throughout the research process to adapt to the participants’ research needs. While research methodologies often focus on what needs to be done, research also has a substantial aspect of reflection, which constitutes part of the privilege academics hold. Researchers need to create spaces for individual and shared deliberation, within a debate, through explorative questions, orally, in writing or through drawings. Schematic summaries also support following the thought process. Participants arrive at the project and each meeting with different backgrounds, personal situations and readiness (Boman & Yeo, 2020), and this requires flexibility on behalf of the facilitator and group. Further, one should refrain from rushing to a decision, which may leave participants powerless. There is a lot of value in provisionality, openness and waiting (Boman & Yeo, 2020). Third, the conversations and research process are intense and can become tiring. It is important to create a balance between the structure for participation, breaks and informal conversations. Online collaborative tools and voting systems may facilitate participation.

42  Research handbook on disability policy Control over the Process The academic researcher may assume a major role of facilitation, which can also be done by co-researchers. In any case, it is important to provide information throughout the project on what has been done, next steps and what to expect. Second, a continuous request for feedback and letting the group or certain co-researchers decide or take the lead enables co-researchers to feel comfortable contradicting the academic researcher. In my case, this was particularly important during the analysis phase, where I perceived a major risk of imposing my interpretation of the data. Time Management Time management can be challenging in research projects and must be planned. In my experience, self-advocates are often committed to many projects, and it can be difficult to allocate a good time for all participants. It is also important to allocate time for all parties, co-researchers and academic researchers during the project to process information, debrief, reflect and become creative (Boman & Yeo, 2020). One also needs to include time for breaks, to connect or simply have an informal conversation, which builds the bonds to work together over a longer period. Access to Knowledge and Networking The activity of researching itself is a continuous exposure to different sources of knowledge, through lectures, trainings, conferences, books and journals and exchanges with other researchers. It is important to facilitate access to these sources through open access publications, easy-to-read versions, videos or summary presentations. Further, research and academia include exchange with other researchers through conferences, collaborations or informal gatherings. The need to create networks has been highlighted above. Participatory research projects need to think about how they wish to disseminate their study but also how can they facilitate exchange with other disabled researchers.

6.

CASE STUDY OF PARTICIPATORY RESEARCH IN SOCIAL POLICY WITH PEOPLE WITH INTELLECTUAL DISABILITIES IN MADRID, SPAIN

As part of an ongoing project, I work together with seven co-researchers with intellectual disabilities, following the guidelines of HRBPR. This project is part of the Disability Advocacy Research in Europe project, funded by the European Union’s Horizon 2020 research and innovation programme under the Marie Skłodowska-Curie grant agreement No. 814249. Recruitment was done via an inverted job offer, an idea from Clíona de Bhaílis. The inverted job offer was an offer for people with disabilities to use my services as researcher to conduct a small research project within the framework of the CRPD in Spain under their terms as ‘employers’. Those hiring me would not have to bear any costs and would be remunerated for doing the project with me. Due to the pandemic, the job offer was mainly disseminated via email and online events. I also offered an eight-week training course on research methodolo-

A journey together  43 gies and research in disability studies. Eleven people signed up for the training and the project, of which seven remained throughout the project. Co-researcher Agreement During the first sessions, we established a co-researchers’ agreement, which included working rules, the time commitment, decision-making rules, the co-researchers’ authorship and rules on use of email and WhatsApp. Co-researchers were remunerated in a one-time payment due to administrative limitations. The agreement also explained that I would use the experience for my own research on participatory research methodologies. The agreement also stated that the CRPD would serve as the framework for the research. Most of the co-researchers have received training on the CRPD as self-advocates and to date there is accessible material explaining the CRPD and its implications. The agreement was a tool to guide future conflicts or disagreements, decision-making processes and to be clear on commitment. Constant reminders of the voluntariness of participation were given. When one of the co-researchers left, I refrained from retaining or convincing him otherwise. Training Our project began with an optional training programme, which consisted of eight modules that covered an introduction to social science research and participatory research, different parts of a research process, quantitative and qualitative methodologies, examples of qualitative research, results and analysis, dissemination, ethics and participatory research methodologies. Each session began with a presentation with examples and ended with questions to be discussed. The duration was an hour and a half. Examples were drawn from disability studies and Spanish research studies. External researchers were invited to present their own research and methodology. Throughout the project, ad hoc training or background information was provided whenever needed. The training sessions were blended with discussions on rights and the situation of people with intellectual disabilities. Development The group chose to explore the impact of the pandemic and the restrictions on people with intellectual disabilities, out of concern for their peers’ wellbeing. The project focuses on the impact in daily life, including loss of routine, exercise and lack of access to new technologies. The findings included an increased fear to resume normal life experienced by their peers, isolation, a lack of choice on where to live or with whom to stay during lockdown and increased control and overprotection. We arranged two exchange experiences with other disabled researchers. After these encounters, the group expressed the wish to engage in further research and this led to an invitation to participate in other research projects and to publish a chapter. Further, the desire to meet again and organize more exchanges was expressed from both sides. Project Background The project took place in Spain and started during a strict lockdown during the COVID-19 pandemic. One of the limitations of the project was that only people who had acquired

44  Research handbook on disability policy (recently or before the pandemic) digital skills could effectively join. In Spain, most research around the impact of COVID-19 has been done from a service provider perspective or by academic researchers with limited input of civil society (García et al., 2021). In contrast, the co-researched project placed the focus on how people had experienced the lockdown, how it had impacted their personal relationships (e.g. not seeing loved ones in over a year) and how they had been subject to additional restrictions and fewer opportunities. As stated above, a triangulation between studies delivered a more nuanced picture of the impact of the pandemic on the lives of people with disabilities. None of the previous studies had reflected on the impact on the right to independent living and in the community, or around policies to reduce the high fear induced in people with intellectual disabilities. Reflexion I kept a journal on the research process, which I wrote after the sessions and exchanges with participants. We held three reflective sessions on what was working and what was not. I tracked tensions, questions that came up and how it matched my intention to become an ally. I explored the reasons that pushed me to argue for certain points, or how I felt when participants ignored what I said, or when a discussion got out of hand and I felt I failed. Journaling and shared discussion helped me to distance myself from feelings of guilt and impotence. Collective reflection was aided with visual schemes and small group debates that were then shared in the wider group. In this online co-research experience, I learned that it is necessary to reduce intensity towards the end of the session, and to leave space and time for debriefing. While in-person meetings usually allow for a more natural transition, online meetings can end quite abruptly. We started our meetings catching up and ended with a short summary, which is emailed afterwards in the form of a presentation as well.

7. CONCLUSIONS My research project aimed to show that human rights-based participatory research can produce valuable evidence to inform social policy and map how it can be done. The project provided evidence on working remotely and how there is a gap between how disability is conceived within social policy and the CRPD, and the preferences of people with disabilities. Our work together produced evidence on how COVID-19 had affected people with intellectual disabilities in Madrid. In contrast with other research on the impact of COVID-19, our research brought out a different view on lockdown and the realities of people with disabilities. While much of the literature review focused on the impact on service provision and lack of sufficient protection of disabled lives by states, our research showed a violation of the right to independent living and increased surveillance and overprotection. Participatory research places as much value on the process as on the outcome of the research and HRBPR contributes to creating a fairer and human rights-compliant research process. My co-researchers have expressed repeatedly a desire to continue doing research, and during our launch event some attendees also expressed the wish to have future opportunities to engage in research. They especially valued the work, getting paid and talking to other disabled people about topics they found important. We keep in touch to discuss how my work is advancing and

A journey together  45 to explore new dissemination avenues and collaboration opportunities. Participatory research provides an excellent avenue to involve people with disabilities in the conversation on how to create change in social policy and advance the implementation of the CRPD. These collaborations are immense learning opportunities for all sides, and people with disabilities must be involved in all conversations about them and lead the change. Co-production is being increasingly recognized by the research community and policy makers within social policy and disability studies. Experiential knowledge benefits from situated and value-laden knowledge, which is much needed to solve complex social policy issues. The participation of people with intellectual disabilities in research has increased around the world, as well as knowledge on participatory methodologies. While challenges remain, there are more tools to address these and more experiences to learn and expand participatory research. Participation can be shaped in different forms and intensities and adapted to different projects and funders. It produces practical and revealing inputs and outputs, which fuel the energy of researchers, but it also requires effort and courage on behalf of researchers and co-researchers. Researchers with intellectual disabilities are needed in social policy research to identify and tackle invisible barriers, ableism in policy design and implementation in line with the CRPD. The unique perspective and knowledge brought by co-researchers with disabilities can contribute to leading social policy towards a much-needed rights perspective. The exclusion of people with disabilities from research and mainstream social policies perpetuates their marginalization and violates their human rights. Participatory research is not only an effective methodology to produce relevant knowledge and change, but also an ethical commitment and stands for full recognition of the people with disabilities as upheld and promoted by the CRPD.

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4. Accessibility policies in Brazil: negotiating collective access through the principles of Disability Justice for a Brazilian Center for Disability Studies Marivete Gesser and Anahí Guedes de Mello

INTRODUCTION Legislation in Brazil aimed at guaranteeing the rights of people with disabilities is very broad. In the 1980s, people with disabilities participated actively in the Constituent Assembly, managing to include disability in a transversal way in general legislation for health, education, labor, and social protection within the 1988 Constitution of the Federative Republic of Brazil. This inclusion enabled the creation of decrees and specific laws aimed at ensuring the access and participation of people with disabilities in all public spaces, including in events or gatherings of a scientific, political, and cultural nature. Prominent in this legislation are Law 10,098/20001 and Decree 5,296/2004,2 which introduced into the Brazilian legal system the principle of the inalienable right of access and participation of people with disabilities in all public spaces. Both legal provisions emphasize that this access must be provided, including for events or gatherings of a scientific, political, and cultural nature. However, these legal instruments did not have the same effect for the guarantee of accessibility as the Convention on the Rights of Persons with Disabilities (CRPD). The CRPD was the first and, until then, only international human rights treaty to be incorporated into Brazilian law with the status of a constitutional amendment, being added to the 1988 Constitution through Legislative Decree 186/2008.3 As a result, all legislation that preceded the CRPD had to be modified to adapt to what it stipulated. In addition, the constitutional status of the CRPD means that it has become an ‘indelible clause’, meaning that the rights it provides for can only be removed or changed through the approval of a new constitution, and cannot be challenged by any other legal instrument, not even constitutional amendments. This means that in Brazil individuals can use the CRPD to sue federal, state, and municipal governments. Therefore, in Brazil the CRPD has ‘the force of law’, in the sense that it has no precedents in Brazilian legislation. With immediate effect on the constitutional hierarchy, the CRPD stands above any and all Brazilian legislation related to people with disabilities. In 2015, in order to create provisions aimed at implementing the CRPD, Brazil passed the Brazilian Law on the Inclusion of People with Disabilities – (BLI) (Law N. 13,146, of July 6, 2015). The Brazilian body of legislation is characterized, in legal terms, as one of the most advanced in the world in terms of the rights of people with disabilities (Maior, 2017). All this legislation is strongly driven to remove the many social barriers to ensure the accessibility and participation of people with disabilities on equal terms with other people. However, the structural ableism that hinders its implementation, which in the CRPD is defined by the expression ‘barriers due to attitudes’ or ‘attitudinal barriers’, as well as the unique character of the accom49

50  Research handbook on disability policy modations necessary to meet the requirements of multiple corporalities and sensorialities mean the legislation does not assure a priori the social participation of people with disabilities in different social contexts. This chapter aims to present the contributions of the Center for Disability Studies (NED – Núcleo de Estudos da Deficiência) of the Federal University of Santa Catarina (UFSC), a public university based in southern Brazil, to the field of accessibility in academic and political events. Therefore, after the presentation of a personal account by the second author and a brief description of NED, we highlight the activities encompassed in the following areas: (a) the production of training and guidance materials aimed at public policy professionals; (b) the orientation provided to scientific events to ensure accessibility for people with multiple sensorialities and corporalities; and (c) networking and cooperation at national and international levels to develop theoretical discussions and delineate political strategies. The approach focuses on the articulation between the macro-political (laws, decrees, and sectorial policies) and the micro-political levels (actions aimed at implementing these policies in specific contexts). We start from the assumption that the effectiveness of collective access, beyond constitutional rules regarding rights and the indications specified in accessibility manuals, must incorporate an approach that has relationality and intersectionality as its ethical principle. This is necessary because people with disabilities have multiple corporalities and sensorialities and, therefore, may have different needs and preferences among themselves – even within the same disability. Thus, we consider that this approach demands both the incorporation of systematized knowledge of accessibility and Universal Design as well as attention to the specific demands of each individual, with and without disabilities. Hence, the implementation of accessibility in physical and virtual spaces needs to be built by talking to people with disabilities and to representatives from other social groups which, for some reason, also need to be accommodated. This strategy is fundamental to ensuring the social participation of all people, in a broad and general way. In the next section, we will present the chapter’s conceptual framework, which covers: (a) a brief section on Disability Justice and how it differs from the ‘disability rights’ perspective, in which the social model of disability is embedded; (b) the concepts of intersectionality, interdependence, and their relations to the subjective dimension, which must be considered to ensure access; and (c) the conceptualization of collective access. Next, a brief personal account by one of the authors will be presented regarding her activism from the perspective of Disability Justice. Afterwards, the UFSC Center for Disability Studies will be introduced, followed by a description of its activities. Lastly, we have the final considerations section, in which some effects of the work and the political challenges are analyzed.

FRAMEWORK Disability Justice Disability Justice grew out of disability activism being first conceived by lesbian (or bisexual or trans) women of color with disabilities, Patty Berne and Mia Mingus, in the San Francisco Bay Area. They were later joined by Leroy Moore, Stacey Milbern, Eli Clare, and Sebastian Margaret. The pioneers were mostly artists linked to a collective called Sins Invalid. This is

Accessibility policies in Brazil  51 a performance project led by disabled people of color that addresses issues such as sexuality, embodiment, and the disabled body. The creators of Disability Justice recognized the advances that the disability rights movement had brought in terms of securing rights for people with disabilities. However, they did not feel represented by this movement that was white and heteronormative, and hardly challenged racist, ableist, and cisheterosexist social structures (Mello et al., 2021; Piepzna-Samarasinha, 2018). There was also a strong questioning regarding the disability rights movement’s focus being solely directed at the category of disability, overlooking other axes of oppression such as race, gender, sexuality, age, immigration status, and religion that are constitutive of corporalities (Piepzna-Samarasinha, 2018; Sins Invalid, 2019). Another criticism that Disability Justice has made of the disability rights movement is that as a result of being heavily led by white people, this movement has ceased to consider whiteness as a privilege. Sins Invalid (2019, p. 15) points out that at its core, the disability rights framework, which was conceived from the Disability Rights Movement, ‘centers people who can achieve status, power and access through a legal or rights-based framework, which we know is not possible for many disabled people, or appropriate for all situations’. In this vein, the considerations of Mingus (2018) and Sins Invalid (2019) highlight that ableist supremacy, white supremacy, cisheteropatriarchy, colonialism, and capitalism work together to oppress people marked by these multiple intersections. Piepzna-Samarasinha (2018, p. 23) highlights that because of this intersection between these oppressive systems, ‘our focus is less on legislation as the only solution to ableism and more on a vision of liberation that understands that the state was built on racism, colonialist ableism and will not save us because it was created to kill us’. As such, it becomes critical that perspectives on disability incorporate these multiple intersections in order to understand this phenomenon so that bodies marked by these aforementioned systems of oppression can move together without leaving anyone behind. Seeking to embrace the multiplicity of people with disabilities, Berne et al. (2018), define Disability Justice using ten key principles. They are: (1) intersectionality; (2) leadership by those most affected; (3) anti-capitalism; (4) solidarity across different activist causes and movements; (5) recognizing people as whole people; (6) sustainability; (7) solidarity across different disabilities; (8) interdependence; (9) collective access; and (10) collective liberation. All these principles are considered fundamental by Disability Justice activists in building an accessibility that welcomes multiple corporalities and sensorialities. The principles of Disability Justice contribute to broaden what we define as human rights. In this way, they move from perceiving the human as an abstract, generic, de-racialized, and disembodied being to include multiple corporalities and sensorialities. This will be the object of the next section. Disability Justice Broadening the Comprehension of Human Rights As already stated, to ensure human rights, it is crucial that perspectives on disability incorporate the multiple intersections so that they are understood (Mingus, 2018; Sins Invalid, 2019). We also take the view that there is a need to disengage from the normative framings produced by the aforementioned oppressive systems to enable people traversed by different intersections to feel entitled to claim collective access. Disability Justice contributes towards expanding discussions on human rights to guarantee the participation of people with disabilities who diverge

52  Research handbook on disability policy from a universal ideal of human being, represented by the white, heterosexual, cis male, from the global north, who is rich, totally independent, and not disabled. Intersectionality is a conceptual tool that emerged from Black feminism and aims to make visible the intersectionality of gender issues with those of race, sexuality, social class, and other forms of discrimination. According to Crenshaw (2002, p. 177), intersectionality ‘deals specifically with the ways in which racism, patriarchy, class oppression, and other discriminatory systems create basic inequalities that structure the relative positions of women, races, ethnicities, classes, among others’. The intersectional perspective is fundamental to the field of human rights, since these have been repeatedly violated by the intersection of oppressive and colonial processes such as sexism, racism, ableism, classism, ageism, and LGBTI phobia, for example. According to Butler’s thinking (2009), we may assert that the intersection of these systems of oppression tends to have the effect of framing people as less human and even as inhumanly unthinkable, leading to implications in recognizing them as more or less worthy of access to quality public and social policies and effective social participation. Interdependence, one of the principles of Disability Justice, demands a break from the liberal approach to human rights, which, as already mentioned, is based on the notion of a universal subject. In this sense, inspired by the perspective of the ethics of care (Kittay, 2015), we propose relationality in order to incorporate dependence and interdependence as fundamental to the construction of collective access. This principle, coupled with the intersectionality previously presented, can produce a liberating access, which will be presented in the following topic. Finally, for collective access to be effectively implemented, we must emphasize the importance of considering the subjective dimension of inequality. Ableism and its intersections with other oppressive systems have impacts on subjectivity insofar as it can have the effect of producing the perception that people with disabilities are less worthy of gaining access to legally guaranteed rights (Gesser et al., 2019). Campbell (2009) points out that ableism is internalized through the tactics of dispersion and emulation of the norm. The former cause the perception that disability is a personal tragedy, limited to a body. Emulation, on the other hand, makes people with disabilities feel the need to reproduce the compulsory ability instead of, for example, fighting for the elimination of barriers. When these subjects are also marked by other oppressive systems that historically delegitimize certain groups and privilege others, the intersubjective relations established in the various social contexts can produce the effect that they are deemed less worthy of rights with regard to others, and they themselves then appropriate this condition and begin to emulate the norm. In this line, Sawaia (1994), an important Latin American author, recommends that the subjective dimension be incorporated in the practices that aim to guarantee rights and the exercise of citizenship. The author emphasizes that ‘citizenship is awareness of equal rights, but this awareness is not only consisted of knowledge of legislation and access to justice. It requires feeling equal to others, with the same equal rights’ (Sawaia, 1994, p. 152). In the next section, we discuss the concept of collective access and its relationship to the other principles of Disability Justice, emphasizing its relationship to intersectionality, interdependence, and collective liberation.

Accessibility policies in Brazil  53 Collective Access is Disability Justice We understand that the construction of a subject who feels they have the right to partake demands the deconstruction of ableist frameworks that historically marginalize and exclude Black people, poor people, women, the elderly population, LGBTI+ people, and people with disabilities. As highlighted by Campbell (2009) and Taylor (2017), it demands a critical position concerning the biomedical model of disability that, when categorizing certain bodies as physically or mentally ill and less able and having the compulsory mandate of the narratives of cure as the only possibility of existing in a dignified way, depoliticizes the struggle for the rights to accessibility already provided for in Brazilian legislation. Collective access arises from Disability Justice activism and produces cracks and ripples in the perspective of Universal Design (UD)4 through the incorporation of the intersectional and political perspective (Hamraie, 2013, 2017), which is justified based on the argument that no body or mind is left behind (Berne et al., 2018). This way, without denying the contributions from UD for amplifying participation of people with bodily variations, collective access has extended UD, showing that it is necessary but not enough to include all people based on their multiple intersections with gender, race, ethnicity, regionalism, queerness, age, and poverty, which intensify oppression and hamper access and social participation. Furthermore, based on what researchers and activists linked to the Center for Disability Studies have thought in Brazil, collective access criticizes the non-relational character of UD, since even though all the resources aimed at assuring the participation of people with disabilities are offered, it is still important to maintain dependency relationships and interdependence. For example, Böck et al. (2020) defend the premise that the Universal Design of Learning incorporates the ethics of care, as the first author’s doctoral study (Böck, 2019) showed that although the offer of resources is not always enough to guarantee access, it is necessary to observe and consider the relationships of dependence and interdependence. Another study, by Muccini (2017), with D/deaf/blind people, showed that this group of people uses eight different ways to access knowledge, which also reasserts the perspective of collective access being broad, in order to ensure access to knowledge. Another highlight is the accessibility counter-manual prepared by the Disability and Accessibility Committee of the Brazilian Anthropological Association. With the collaboration of the second author of this article, the counter-manual reasserts the results of this research, highlighting that all people benefit from practices that contemplate multiple corporalities and sensorialities. After all, ‘we learn in different ways that some have greater ease of understanding and imagery memory, others have a keen hearing for details and tones; some need writing to understand an argument, others have access to images through descriptions’ (Mello et al., 2020, p. 6). Hence, we understand that Mingus (2018) proposes liberatory access for multiple corporalities and sensorialities because: It is not enough to just make sure that we can get into the room or that the conversation is translated or that we can access the materials. And it is not enough for us to simply get to share what’s important to us (though I know that many times we don’t even get to share that), if no one knows how to hold what we are sharing; if no one knows how to understand and fully engage with what we are sharing.

Furthermore, Mingus (2017) highlights that this full involvement can be developed when seeking to cultivate access intimacy, which means the subject is part of spaces and fully involved in them. Therefore, it is necessary to challenge the ableism and historical isolation

54  Research handbook on disability policy experienced by people with disabilities, especially those who are part of other oppressed communities. Thus, access intimacy is interdependence in action, which implies calling on people without disabilities to inhabit the world of people with disabilities. Valuing people with disabilities for what they can do and offer, as opposed to the dominant narratives that place them as a burden, is also an important element to be considered. To end this part, we assume that practices based on collective access should incorporate macro-political and micro-political levels of action. The first refers to the laws, rules, and regulations that assure access from a legal point of view, which is undoubtedly fundamental for the guarantee of rights, although it does not operate sufficiently. The second implies concrete actions guided by a human rights perspective that goes beyond the legal scope of guaranteeing access, producing effects concerning the legitimacy of subjects, individuals historically excluded by the intersection of systems of oppression. This approach considers that access should not be placed as an individual demand, punctual and limited to disabled bodies (Mello et al., 2020), but within a paradigm that considers ‘a broader definition of accessibility, based on the idea of justice of disability’ (Mingus, 2010), contributing to the subject feeling with the right to participate. Inspired by the authors above, we understand that accessibility is more than standardization; it is also a mediation device (Alves & Moraes, 2018). That is, as much as the legislation indicates a series of important regulations and legal provisions for the promotion of accessibility, we cannot reduce it to a ready-made package in which the people with disabilities must take it or leave it, since, depending on the existence of multiple corporalities and sensorialities, in practice, the access involves negotiation between the parties. Based on these assumptions, the Center for Disability Studies has sought to reinvent its practices, increasingly incorporating the dialogue with individuals who demand accommodation to have their right to participate guaranteed and valued.

ACCESSIBILITY AS A POLITICAL DEMAND AND THEORETICAL CONTRIBUTION: ANAHÍ’S ACCOUNT My academic trajectory has always been under the strong influence of ‘militant capital’ or, in the terms of Bourdieu (1986), a social capital5 marked by a great insertion, since youth, in social movements for the rights of people with disabilities, especially those women with disabilities and LGBTI+ people with disabilities. Thus, I engaged as an activist in important national and international events, aimed at training and engaging in the construction of public policies for people with disabilities, especially those based on issues of accessibility, gender, and sexualities. As a result of this position within political activism, I started doing ‘engaged anthropology’ (Kirsch, 2010; Low, 2011) in the fields of feminist studies of disability and disability anthropology, with research results published in book chapters and articles in reference journals in the fields of anthropology and gender studies in Brazil. In 2004 I cooperated in the foundation of the Center of Independent Living of Florianópolis (CIL-Floripa), the first in the State of Santa Catarina, in southern Brazil, having been its first president in two consecutive terms (2004–2006 and 2006–2008), making me the first deaf person to officially join the Brazilian Independent Living Movement. This position allowed me the experience of engaging, invited by the federal government under Lula’s first term (2003–2006), in an important working group on ‘sensory disability and technical assistance’, bringing the demands of deaf people who do not communicate in Brazilian sign language. My

Accessibility policies in Brazil  55 collaborative participation resulted in contributions inserted in a broader document that would later come to be known as Decree 5,296/2004. It was at this moment that I made an impact on the political scene, engaging in the field of accessibility. I went through numerous activism sets at different times in my career, first in Deaf and Hard of Hearing Activism in 1992, but this experience was more focused on meeting points with Deaf people who use Brazilian sign language, through the practice of sports such as soccer and volleyball, including trips to championships in other states and municipalities in the interior of Santa Catarina. This phase was one of engagement in Deaf spaces of sociability that, conclusively, ended up forging in me a political identity as a deaf outsider, in which I was often asked by Deaf peers to mediate their communication with listeners since I was considered ‘the only oral deaf person’ in the group. Later, in 1998, as a Chemistry undergraduate student at the Federal University of Santa Catarina, I became more involved in disability activism, with greater insertion and political action when I moved from Chemistry to Social Sciences in 2005, at the same university. This second phase of activism was the growing moment of claiming the desire to be recognized and respected as a deaf person who is not a sign language user, with different needs and preferences for access to communication, this being the first flag I raised and with which I excelled in disability activism. Currently, I’m part of feminist lesbian activism, guiding the intersection between disability and lesbianity, without ceasing to claim and guarantee my access to communication within the spaces of lesbian activism. The right to accessibility for persons with disabilities has been assured in Brazilian public policy for many years, with the legal provisions starting to address the issue of accessibility more specifically from the aforementioned Law No. 10,098, published in 2000 and known as the ‘law of accessibility’. However, this law was only regulated in 2004, through Decree No. 5,296. Before the publication of this decree, there was no explicit recognition of the existence of diversity among people with the same disability. The aforementioned decree innovated by emphasizing the recognition of the existence of deaf people who do not communicate using Brazilian sign language and by relating human support and different technologies that are used as enablers for accessing information. Another example was my participation in the first group that in 2005 formed Study Commission No. 3 (CE-03) of the Brazilian Association of Technical Standards (ABNT), which was to be responsible for drafting Brazilian technical standards on accessibility in communication. On that occasion I represented two institutions, the Accessibility and Technologies research group from the Remote Experimentation Laboratory (RExLab) at UFSC and CIL-Floripa, beginning the involvement that resulted in the publication, on October 31, 2005, of the first edition of Brazilian technical norm ABNT NBR 15290:2005 Accessibility in Television Communication. Currently, NBR 15290 is in its second edition, revised in December 2016 under the code ‘ABNT NBR 1520:2016 Accessibility in Communication on Television’. This standard provides general guidelines for the insertion of subtitling, audio description, a Brazilian sign language window, and an emergency alert system for accessibility in television communication, within the best Universal Design practices and always considering the different conditions of perception and cognition, with or without the help of an assistive system or another that complements the individual needs of deaf and hard of hearing people, blind people, people with low vision, and people with cognitive disabilities. Moreover, another milestone, in March 2012, was the creation of and participation in the Brazilian Anthropological Association Disability and Accessibility Committee, in order to

56  Research handbook on disability policy develop actions both in the direction of strengthening and consolidating Anthropology of Disability as a field of research and to promote a culture of access in the academic and anthropological community as a whole, through the expansion of the use of technical and normative resources and the incorporation of accessibility practices in classes, lectures, conferences, and other academic events, virtual and in person. Other Brazilian academic events that innovated on the theme of disability and accessibility were the 10th and 11th International Seminars on Doing Gender (Fazendo Gênero), in 2013 and 2017 respectively. These were considered to be the most important events in the field of feminist and gender studies in Brazil, always held in Florianopolis. From the understanding of the transversality of disability that implies the emergence of guidelines and demands for accessibility resources for people with disabilities, not only in government gender policies but also in a joint effort to promote and root the principles of accessibility in theory and Brazilian feminist practice, the Accessibility Commission was created under my coordination. The Accessibility Committee of the 10th and 11th International Seminars on Doing Gender was responsible for pedagogically inferring actions involving the implementation of accessibility for students and researchers with disabilities in the area of feminist and gender studies in Brazil. However, as a result of constant learning, based on mistakes and successes, which contributed a lot to my improvement in the development and implementation of micro-policies and access practices, over time I realized that at that time the approach to accessibility adopted for both events of Doing Gender was wrong. The reason for this is because my team was offering accessibility according to the demands by type of disability, instead of focusing on barriers, encompassing practices of access and inclusion to various corporalities and ways of being in the world. This experience showed that putting accessibility into practice is always a daily and contextual exercise, because we tend to choose what is more convenient to solve, which is to think of accessibility only as standardization, and not as a mediation. In Psychology, the perspective of institutional analysis calls this ‘over-implication’ (Coimbra & Nascimento, 2007), highlighting how the accumulation of tasks, and even activism in some situations, can produce a political emptying of our actions, hence the importance of analyzing the implication, in order to avoid this emptying. Given the importance of the subjectivity of the disability experience, what does ‘feeling equal’ in dignity, rights, and duties imply? It also implies the subjective potency of incarnated experience to say ‘what’s missing?’ and ‘what is not working?’ A point that deserves reflection is my tendency to simultaneously embody two styles of leadership, in an engagement that involves the way I articulate academia and activism: the power of expertise, that is, the use of theoretical knowledge in militant action; and the referent power, in the sense of being a reference for the activist-academic experience for others. In my perspective, there are three major and most immediate difficulties in the construction of accessibility practices and inclusion of people with disabilities in various environments: first, much of the knowledge that is produced about and for this group remains on paper, not being translated in concrete actions and mentality changes. This situation becomes more serious when it comes to people with the same disability, but with different needs and preferences. Second, when the solution for the inclusion or, at least, for the adaptation of spaces, services, contents, and teaching methodologies in each specific case is the incorporation of assistive technology, this often ends up adding two rather complicated attitudinal barriers to overcome: the first is that referring to the lack of knowledge of the potential of the person who requires reasonable placements, and the second is the loss related to the lack of knowledge about the use of technology itself and how many

Accessibility policies in Brazil  57 doors are open to it. These are two very powerful attitudinal barriers. The third difficulty is the high economic cost of this technology.

CENTER FOR DISABILITY STUDIES AT UFSC The Center for Disability Studies (NED – Núcleo de Estudos da Deficiência) of the Federal University of Santa Catarina (UFSC) is linked to the Graduate Program in Psychology at the same University. NED was officially founded in the year 2008 by Prof. Dr. Adriano Henrique Nuernberg and Anahí Guedes de Mello, then a student of Social Sciences. Both authors of this chapter have been present since the foundation. The first author, Marivete Gesser, who currently coordinates the NED, was a doctoral student at the NED, and the second author, Anahí, contributed to the construction of the Center proposal, especially with the incorporation field discussions related to Feminist Disability Studies. The NED currently brings together people with and without disabilities, who are researchers from different areas of knowledge, as well as undergraduate and postgraduate students from several universities in Brazil, professionals who work in public policies for education, health, and social work, involved in teaching activities and research and extension projects. The objective of the NED is to promote teaching, research, and extension activities in the field of disability based on an interdisciplinary perspective aiming to produce, together with people with disabilities, knowledge and practices aimed at qualifying public policies and expanding the participation of people with disabilities in society, as recommended by official documents such as the Convention on the Rights of Persons with Disabilities and the Brazilian Law for the Inclusion of People with Disabilities. Thus, the NED seeks, based on the emancipatory perspective of disability, to bring people with disabilities into the university in all the actions developed, so that they can take ownership of discussions in the field of Disability Studies and take them to the community and political activism contexts where they are inserted. In addition to building actions based on what is recommended by the CRPD and Brazilian Law on the Inclusion of People with Disabilities, the NED has also been in dialogue with the field of Disability Studies. This dialogue was initiated by the NED with the social model of disability, a paradigm that has greatly contributed to removing disability from the field of tragedy and charity and placing it in the field of human rights. Aiming to broaden NED’s analysis of the experience of disability and its intersections, nowadays we have dialogue with Critical Disability Studies, especially with Disability Justice and crip theory. Regarding the dialogues with crip theory (Kafer, 2013; McRuer, 2018), it has offered valuable contributions to crip times, spaces, and ways of relating to people with multiple corporalities and sensorialities, since it decolonizes the rigidity of these notions. Focusing on producing theoretical-conceptual and methodological advances, the NED has sought to develop network actions, seeking dialogue with researchers from other universities in Brazil and research networks in Latin America, the United States, the United Kingdom, and Canada. In this way, we have contributed to the training of other researchers and also, based on the dialogues carried out, expanded debates on topics such as collective access. Concerning teaching activities, the NED offers three disciplines, two for undergraduate and one for graduate programs. All of them, aligned with the field of Disability Studies, have an intersectional and interdisciplinary character, receiving students from all courses at UFSC and

58  Research handbook on disability policy students from other universities. Regarding the research, these tend to focus on the field of public policies and academic activism, seeking to cover the experiences of people with disabilities in their interaction with these policies and with activism. Thus, the NED researchers have strongly circumscribed their research in the field of disability policy, studying themes related to education, health, social assistance, participation in rights councils, and social movements. Regarding extension activities,6 NED has been developing, throughout its history, numerous extension projects and actions. One of the highlights refers to the actions aimed at the inclusion of students with disabilities in higher education and comprised, in addition to the assistance of NED members in the process of creating the Educational Accessibility Coordination at UFSC, actions aimed at welcoming students with disabilities at UFSC and the formation of the academic community for the inclusion of students with disabilities in the university. For this purpose, as one of the actions, the NED produced educational videos to train teachers, students, and technical-administrative staff at UFSC and raise awareness in the community about the inclusion of persons with disabilities. The videos were widely publicized on social networks and have played an important role in bringing Disability Studies to different social contexts in Brazil. Currently, the extension actions carried out by the NED have been integrated into an extension program entitled ‘Public Policies, Human Rights and Educational Practices along with Persons with Disabilities’. This is intended to qualify public policies aimed at persons with disabilities in order to ensure their participation and agency. The actions developed aim at: (a) training professionals from different areas to work with persons with disabilities; (b) the removal of barriers that hinder the social participation of persons with disabilities in different social contexts; (c) the inclusion of students with disabilities at different levels of education; and (d) the production of practices that are in line with Brazilian legislation. As it is not possible, in this chapter, to provide a comprehensive description and analysis of the actions developed and their effects, we chose to describe three types of actions that are related to guaranteeing collective access. Thus, we will address (a) the production of guidance materials aimed at professionals working in public policies; (b) the guidelines provided to scientific events aimed at ensuring accessibility to people with multiple corporalities and sensorialities; and (c) the articulation of national and international networks of professionals with and without disabilities who work collectively to promote and disseminate the collective production of anti-disablism practices. All the actions we have developed are structured with the theoretical assumptions that guide our work (presented above).

DESCRIPTION OF ACTIONS Production of Training and Guidance Materials Aimed at Public Policy Professionals We have produced countless training materials aimed at training for collective access. Here we will highlight two of these materials. The first is the thematic booklet ‘Psychology and People with Disabilities’ which aims to guide psychologists and other professionals working in the field of social policies to build professional practices that are in line with Brazilian legislation related to people’s rights with disabilities and the theoretical conceptions that support the production of this legislation. The material fills a gap in initial training since most Brazilian undergraduate courses have not yet incorporated disability into the curriculum. This material

Accessibility policies in Brazil  59 was also produced online, has free access and has been widely disseminated. Based on ‘feminist disability studies’ (Garland-Thomson, 2005), the thematic section shows the importance of breaching conceptions and practices that situate disability in the body and the people with disability as passive subjects. It highlights the importance of the practices developed in the scope of public policies being guided by collective access and the participation of people with disabilities in the entire process of construction, implementation, or execution and inspection of actions. Furthermore, starting from the understanding that disability is a matter of justice, it highlights the urge to consider the intersections of disability with other systems of oppression and inequality, as well as the multiplicity of corporality concerning dependence and interdependence and needs of care. The main themes addressed were: legislation; disability and intersectionality; challenges of legislation to professional practices in public policies; sexual and reproductive rights; Universal Design of learning and school inclusion. Another example is the book Disability Studies: Anti-ableism and Social Emancipation (Gesser et al., 2020). This book was ideated by people with and without disabilities linked to the NED, aiming to integrate the knowledge learned and personal experiences in a book aimed at enhancing anti-ableist struggles. Nine authors who contributed chapters are people with disabilities (one-third of the total number of authors), seeking to value both the synthesis and collective learning as well as the unique experiences of people with disabilities. In addition to the materials described above, the center has also produced videos, newsletters, and other materials that have been disseminated on different social networks. In addition to these two materials described above, we have also produced other research and materials already mentioned earlier in the chapter, such as the research by Patrícia Muccini with deafblind students, the studies by Geisa Böck and collaborators and the accessibility counter-manual. We understand that the production of knowledge with free access is one of the fundamental elements for the theoretical advances in the field to be widely disseminated. Guidance Provided to Scientific Events Aimed at Ensuring Accessibility to People with Multiple Corporalities and Sensorialities In addition to the two editions of the International Seminar ‘Doing Gender’, described in the topic of Anahí’s account above, we promote study groups, and initial and continuing education in disability and accessibility studies to event monitors, teachers, and students. We also held the 1st and 2nd Santa Catarina Psychology and Disability Studies Seminars in partnership with the University and the Regional Council of Psychology of Santa Catarina. In both events, to ensure the implementation of the CRPD and subsequent legislation regarding the right of people with disabilities to engage on equal terms with others, we also implemented an accessibility committee, which was made up of master’s and doctoral students – scholars in the field of Disability Studies – and recruited undergraduate students, who received training focused on the specificities of the participants. Although the NED had already advanced a lot from a theoretical-methodological point of view, the training carried out at the first event, in 2017, still aimed to inform which resources are needed by which type of disability, not emphasizing the importance of building collective access in partnership with people with disabilities. Thus, the participant filled in the registration form, in which there was a field where s/he indicated if s/he had some disability, and a blank field to describe the type of disability. So, based on the information made available, the Accessibility Committee sought to implement actions to accommodate the participant, but still without a concern to maintain a dialogue in order to

60  Research handbook on disability policy obtain more information about the construction of strategies aimed at the specificities of the condition of the participants. In 2019, based on the suggestions we received from people who benefited from our work at the first event, we improved the form, making it clearer that it was necessary to describe what type of placement the person needed to participate on equal terms with other people. In addition, the Accessibility Committee contacted some participants to obtain additional details about the features requested in the application form. Concerning training, based on an analysis of the work carried out in the previous event, we sought to build access with participants with disabilities, and the training provided to event monitors was initiated by bringing up the premise that people with the same disability may have different needs and preferences. In order to guarantee the participation of people with disabilities, we created a booklet aimed at training monitors, which highlighted the importance of promoting the participation of people with disabilities in choosing the resources and assistance they need. Articulation in National and International Networks Proposing to expand and spread the perspective of collective access as a right beyond the NED, as well as to strengthen it considering the intersectional dimension of human rights, we have sought to act in a network. Thus, we have partnerships with researchers linked to several Brazilian Universities (the University of São Paulo, the University of Brasília, Fluminense Federal University, the University of the State of Santa Catarina, Federal Institute of Santa Catarina). We have also invested in international networks with a decolonial perspective of knowledge production. Among these, we would like to highlight Anahí’s participation in Anis: Institute of Bioethics, Human Rights and Gender (Anis – Instituto de Bioética, Direitos Humanos e Gênero) – and the working group Estudios Críticos en Discapacidad of the Latin American Council of Social Sciences (Conselho Latino-americano de Ciências Sociais) (CLACSO). Another important partnership refers to the participation of both authors in a network of Brazilian researchers linked to Western University, in London, Canada, who have discussed disability and collective access. This collaboration has materialized in the organization of events, the provision of a course on Disability Studies to students from both universities, UFSC and Western University, and in the production of promotional materials, such as those mentioned above.

FINAL CONSIDERATIONS The work we have been doing in the field of collective access has shown that there are some political challenges to be faced. The medical model of disability, which places disability as an individual problem, resulting from a deficit or deviation from what is considered the norm, is still dominant in Brazil, as already pointed out by Mello et al. (2014). This produces many challenges for the field of accessibility, since as long as disability is understood as an individual’s problem, it will be difficult for people with disabilities to claim collective access. This is not a mere detail, since the legitimacy of access for people who need it is relational and political, and is in constant tension with the framing of disability that individualizes this experience, in contrast to what is already legitimized by legal provisions such as CRPD and LBI.

Accessibility policies in Brazil  61 Concerning the issue of access, we have realized that there is a need to incorporate a culture of access (Mello et al., 2020), so that people who need it to participate in social spaces feel entitled to claim it. As such, although the encounter with the field of Critical Disability Studies is fundamental, the organizing committees of events also need to anticipate financial resources in their projects to promote accessibility, beyond the provision of reasonable adaptations. Together with the groups of researchers with which we have worked, and from the collective dialogue with our research networks, and also from the reflections that we have built based on critical studies of disability, we have been able to advance in the NED in what we mean by collective access. The initial actions aimed at accessibility were designed by types of disability, although to some extent they already brought dialogue with people with disabilities. Today, we place dialogue with people with disabilities as essential and think of collective access beyond disability, as a practice that will benefit people with multiple corporalities and sensorialities. The results obtained from the activities that have been carried out at NED indicate that Brazilian accessibility policies could advance significantly in the direction of collective access if they incorporate the principles of Disability Justice. The planning of access in conjunction with people with disabilities and other people with specific accommodation needs is also an important element to be incorporated so that the multiplicity of corporalities and sensorialities can be accepted according to their unique characteristics. There is also the need for Disability Justice to be included in the undergraduate and graduate curriculum, as well as in continuing education programs. In this way, policy professionals working in education (at all levels), health, social welfare, and law will be better prepared to develop practices that ensure access to all historically marginalized people. Within the scope of research, it is very important to conduct studies that bring to light the effects of austerity policies, intensified from 2016 onwards, on the access of people with disabilities. It is also essential to conduct research on the effects of the intersection of disability with other social markers of difference, in order to identify how they can impact the access of more vulnerable groups, such as poor, Black, and LGBTI+ people with disabilities. These surveys should be carried out with the participation of people with disabilities, revealing the problems they face in their daily lives with regard to guaranteed access. In this manner, the findings may provide indicators for the improvement of public policies in education, health, and social assistance, considering the specificities of the multiple corporalities and sensorialities. Finally, we want to go back to the initial reflections in the text, highlighting that access, in addition to being a technical issue, needs to be an ethical-political commitment to accepting differences. Crippling times, spaces, and ways of relating is essential to legitimize certain social groups – historically marked by numerous oppressions that cross and constitute bodies that diverge from what is considered the ideal of being human (Kafer, 2013; McRuer, 2018) – in an emancipatory perspective. It is also necessary to crip the look and the ways of relating to difference – whether it is due to a disability, class, race, ethnicity, gender, sexuality, age, or a mixture of all these social markers to, in line with Disability Justice, leave no one behind.

62  Research handbook on disability policy

NOTES 1. 2. 3.

4.

5. 6.

Start of endnote. The aforementioned law was enacted on December 19, 2000, and establishes general norms and basic criteria for the promotion of accessibility for persons with disabilities or reduced mobility, and other measures. End of endnote. Start of endnote. Enacted on December 2, 2004, it regulates Law No. 10,098/2000 above and Law No. 10,048/2000, which gives priority to the care of people with disabilities and elderly people in public services. End of endnote. Start of endnote. According to Article 5, paragraph 3 of the Brazilian Constitution, human rights treaties ratified by Brazil, which acquire constitutional hierarchy, become entrenched clauses and cannot be suppressed even through constitutional amendments. Thus, in Brazil, the principle of accessibility is considered a permanent clause. End of endnote. Start of endnote. According to Brazilian Technical Standard NBR 9050/2015 on Accessibility to buildings, equipment, and the urban environment, Universal Design refers to the creation of products, environments, programs, and services to be used by all people, without the need for adaptation or specific design, including assistive technology resources. End of endnote. Start of endnote. According to Bourdieu (1986), what constitutes social capital are the networks of social relationships, which allow individuals to have access to the resources of other members of their group, network, or social movement. End of endnote. Start of endnote. University extension activities are those aimed at applying the knowledge developed at the university to the community in general. This can be done by means of lectures, courses, advisory services, consultancies, and other specific services. End of endnote.

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Accessibility policies in Brazil  63 and the Global South, 6(2), 1772–1791. https://disabilityglobalsouth.files.wordpress.com/2019/07/06 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ _02_05.pdf ​ ​ Gesser, M., Böck, G. L. K., & Lopes, P. H. (Eds.). (2020). Estudos da Deficiência: interseccionalidade, anticapacitismo e emancipação social [Disability studies: Anti-ableism and social emancipation]. CRV. https://doi.org/10.24824/978655868467.1 ​ ​ ​ ​ ​ ​ Hamraie, A. (2013). Designing collective access: A feminist disability theory of universal design. Disability Studies Quarterly, 33(4). https://dsq-sds.org/article/view/3871/3411 ​ ​ ​ ​ ​ ​ ​ Hamraie, A. (2017). Building access: Universal design and the politics of disability. University of Minnesota Press. Kafer, A. (2013). Feminist, queer, crip. Indiana University Press. Kirsch, S. (2010). Experiments in engaged anthropology. Collaborative Anthropologies, 3, 69–80. https://derianga.files.wordpress.com/2010/05/kirsch-collaborative-anthros-experiments-in-engaged ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -anthro-2010.pdf ​ ​ Kittay, E. F. (2015). Centering justice on dependency and recovering freedom. Hypatia, 30(1), 285–291. https://doi.org/10.1111/hypa.12131 ​ ​ ​ ​ ​ ​ Low, S. M. (2011). Claiming space for an engaged anthropology: Spatial inequality and social exclusion. American Anthropologist, 113(3), 389–407. https://doi.org/10.1111/j.1548-1433.2011.01349.x ​ ​ ​ ​ ​​ ​ ​ ​ ​ Maior, I. M. M. de Loureiro. (2017). Movimento político das pessoas com deficiência: reflexões sobre a conquista de direitos [Political movement of people with disabilities: reflections on rights achievements]. Inclusão Social, 10(2), 28–36. http://revista.ibict.br/inclusao/article/view/4029. ​ ​ ​ ​ ​ ​ ​ McRuer, R. (2018). Crip times: Disability, globalization, and resistance. New York University Press. Mello, A. G., Block, P., & Nuernberg, A. H. (2014). Não é o corpo que nos discapacita, mas sim a sociedade: a interdisciplinaridade e o surgimento dos estudos sobre deficiência no Brasil e no mundo [It is not the body that disables us, but society: Interdisciplinarity and the emergence of studies on disability in Brazil and in the world]. In E. Shimanski & F. Cavalcante (Eds.), Pesquisa e extensão: experiências e perspectivas interdisciplinares [Research and extension: Interdisciplinary experiences and perspectives] (pp. 91–118). Editora da UEPG. Mello, A. G., Fietz, H., & Rondon, G. (2021). Entre os ‘direitos das pessoas com deficiência’ e a ‘justiça defiça’: reflexões antropológicas a partir do contexto brasileiro [Between the ‘disability rights movement’ and ‘disability justice’: Anthropological reflections from the Brazilian context] [video]. VII Encontro Nacional de Antropologia do Direito (VII ENADIR). https://www.youtube.com/watch?v= ​ ​ ​ ​ ​ ​ ​ TVPdIWzaS8A. Mello, A. G., Gavério, M. A., von der Weid, O., & Aydos, V. (2020). [Comitê Deficiência e Acessibilidade da Associação Brasileira de Antropologia]. Contracartilha de acessibilidade: reconfigurando o corpo e a sociedade [Accessibility booklet: Reconfiguring the body and society]. ABA; ANPOCS; UERJ; ANIS; CONATUS; NACI: Brasília; São Paulo; Rio de Janeiro. Mingus, M. (2010, August 23). Reflections on an opening: Disability justice and creating collective access in Detroit. Leaving Evidence – a blog by Mia Mingus. https://leavingevidence.wordpress.com/ ​ ​ ​ ​ 2010/08/23/reflections-on-an-opening-disability-justice-and-creating-collective-access-in-detroit/ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Mingus, M. (2017, April 12). Access intimacy, interdependence and disability justice. Leaving Evidence – a blog by Mia Mingus. https://leavingevidence.wordpress.com/2017/04/12/access-intimacy ​ ​ ​ ​ ​ ​ ​ ​ ​ -interdependence-and-disability-justice/ ​ ​ ​ ​ Mingus, M. (2018, November 3). ‘Disability justice’ is simply another term for love. Leaving Evidence – a blog by Mia Mingus. https://leavingevidence.wordpress.com/2018/11/03/disability-justice-is ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -simply-another-term-for-love/ ​ ​ ​ ​ ​ Muccini, P. (2017). Estudantes com surdocegueira na universidade: mapeando barreiras e facilitadores que perpassam o processo de inclusão acadêmica [Students with deafblindness at the university: Mapping barriers and facilitators that go through the process of academic inclusion]. Dissertation (Master’s in Psychology) – Universidade Federal de Santa Catarina, Florianópolis. Piepzna-Samarasinha, L. L. (2018). Care work: Dreaming disability justice. Arsenal Pulp Press. Sawaia, B. B. (1994). Cidadania, diversidade e comunidade: uma reflexão psicossocial [Citizenship, diversity and community: A psychosocial reflection]. In M. J. P. Spink (Ed.), A cidadania em construção: uma reflexão transdisciplinar [Citizenship under construction: A transdisciplinary reflection] (pp. 147–156). Cortez.

64  Research handbook on disability policy Sins Invalid. (2019). What is disability justice? Adapted from Patty Berne’s ‘Disability justice – a work draft’. In Skin, tooth, and bone: The basis of movement is our people (second edn) (pp. 10–21). sinsinvalid.org. Taylor, S. (2017). Beasts of burden: Animal and disability liberation. The New Press.

5. Narrative 2: Evil: disabled villains in media Em Dewhurst

Disabled people in media are often either non-existent or depicted problematically. Representation is limited to one-dimensional characters, defined only by disability, or the misrepresentation of disabilities as harmful stereotypes. More than that, we seem to only exist as victims, heroes or villains. But what is perhaps the most damaging is that depictions of villainous disabled characters appearing in children’s entertainment are all too common. Characters like Captain Hook, Lord Voldemort and Scar, all disabled villains, tell young people that being disabled is connected to being ‘bad’. Ableism is learned, and this is teaching it. Notably, the key to their villainous ways is often in their physical or highly visible disability. Disabled villains are juxtaposed with morally right, ‘perfect’, non-disabled heroes. Consider Star Wars, where Darth Vader’s disabilities can’t be ignored, with inbuilt assistive technology and supported breathing making him ‘more machine than man’. His son Luke Skywalker’s prosthetic hand is so well designed and identical to his ‘real’ arm that being disabled doesn’t interfere with his heroism. Narratives around disability and villainy extend to portrayals of mental illnesses which are inaccurately and harmfully presented. Real symptoms of these disorders are ignored, with their disabilities being seen as threats to others, defined by violence and unpredictability. Consider Kevin from Split, or the Joker. These representations reinforce the false idea that mentally ill people are dangerous, despite the reality they are more likely to be victims of violence. Making villains disabled allows society to further demonise us, particularly when it falls into specific tropes. A key theme for disabled villains is the idea that disability is inflicted as a result of being evil. This suggests to audiences that disabled people must have done something to deserve a ‘punishment’ of disability. Examine Captain Hook’s hand being cut off by Peter Pan and fed to crocodiles, and Darth Vader’s limb loss becoming permanent once he chooses to join the dark side. Another motif is where disabled people resent being disabled so much that it makes them evil. Disabilities supposedly make them more sinister and intimidating. Disability becomes the motive for their villainous actions, and they will often gain magical abilities or technical skills to be as able-bodied as their opponents. Or instead, their physical disabilities will be overcompensated with ‘evil genius minds’. We see this in Detective Pikachu where Howard Clifford, who is a wheelchair user, replaces his mind with a powerful Pokemon to do his evil bidding. Whilst untangling this dangerous trend isn’t easy, there are some things that audiences can do to try and break it down. You should consider: ● ● ● ●

If disability representation is playing into these harmful tropes? If the media you are consuming has any non-villainous disabled characters? If disabled characters are not just one-dimensional and motivated only by disability? If disability is seen to be something bad and needing to be cured? 65

66  Research handbook on disability policy While it is not possible to fix all harmful disability representation by simply asking these questions, beginning to question the media we consume is an important step in tackling ableism.

6. Developing a participatory indicators-based framework for monitoring disability rights Paula Campos Pinto and Maria Engrácia Cardim

INTRODUCTION The development of indicators to monitor the human rights of people with disabilities, even if not an entirely new project, became paramount with the adoption in 2006 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The CRPD subtly reformulates and extends existing human rights to consider the specific rights experience of persons with disability. It also embraces a definition of disability that recognizes the interplay of individual, social, and environmental factors in the production of disability. To uncover these relationships, measure disability-based discrimination, and produce evidence to inform new policy and practice that advance the human rights of persons with disabilities have since become critical research aims (Astorga Gatjens, 2012). This chapter engages with these goals by proposing a participatory indicators-based framework to monitor States’ compliance with the CRPD and evaluate changes in the enjoyment of human rights by citizens with disabilities across time. Indicators are methodological tools of an empirical basis, which provide information about aspects of social reality or the changes that are taking place in it. In the human rights field, they have been defined as “a piece of information used in measuring the extent to which a legal right is being fulfilled or enjoyed in a given situation” (Green, 2001, p. 1065). They are a crucial tool for policy design and help to communicate information. In this sense, indicators are “essential in making the rights of marginalised population groups, including disabled people, more visible and governable” (Priestley & Grammenos, 2021, p. 213). Both quantitative (numerical or statistics-based) and qualitative indicators are necessary to reveal how human rights are being upheld (Green, 2001). Indeed, to achieve an in-depth understanding of the problems at stake, their meaning and magnitude requires not just rigorous methodologies and data collection tools but, above all, robust, valid, and sensitive indicators that are grounded in the everyday experiences of persons with disabilities (Office of the High Commissioner for Human Rights (OHCHR), 2009). Yet, such indicators have been slow to emerge. In the increasingly populated field of human rights, disability rights have been, until recently, a relatively neglected area of work (Hynes et al., 2010). The newly developed Sustainable Development Goals and Convention on the Rights of Persons with Disabilities (‘SDG-CRPD’) Resource Package (OHCHR, 2020) represents a groundbreaking effort to address this need. The Resource Package includes a set of indicators to guide a comprehensive assessment of the rights of persons with disabilities in development initiatives. The indicators cover all articles of the CRPD and are a very useful tool for tracking progress in the realization of disability rights and for identifying gaps in implementation. Following the OHCHR methodology (OHCHR, 2012), the framework encompasses structural, process, and outcome indicators. As such, it provides for evaluations 67

68  Research handbook on disability policy that go beyond the identification of States’ commitments to the human rights in the CRPD to also encompass States’ efforts to transform those commitments into desired results (notably through the policies and measures they adopt), as well as the outcomes of such efforts, translated into disaggregated statistics of access and enjoyment of rights. Another recent wide-ranging initiative to develop disability rights indicators is presented in the Disability Data Report 2021 (Mitra & Yap, 2021). The report uses a variety of datasets to conduct a systematic analysis of the disability questions in national censuses and household surveys, from 2009 to 2018, in 180 countries from all regions of the world. It then assesses 30 quantitative indicators, disaggregated across disability status, for 41 countries. Since this list of quantitative indicators was developed considering the provisions of the CRPD and the SDGs that they could inform, they provide a measure of the rights and human development situation of persons with disabilities in these 41 countries, or the so-called ‘disability gap’. This work adds greatly to the growing literature on disability inequalities and offers valuable tools with which to measure those gaps. The framework presented in this chapter shares many features with the two above-mentioned proposals, but also offers distinctive perspectives on at least two levels: (i) the participatory framework of indicators advanced here is driven by reports gathered from persons with disabilities, so it brings forward their voices and is firmly grounded in their lived experiences of access and/or denial of human rights; and (ii) the framework encompasses both quantitative and qualitative indicators. Our framework was developed in the context of Disability Rights Promotion International (DRPI), a project dedicated to establishing a participatory holistic global monitoring system for disability rights. Between 2001 and 2015, the DRPI team developed, pilot-tested (Pinto, 2011), and applied a set of instruments to monitor the implementation of the CRPD around the world. The DRPI approach is holistic in the sense that it involves the collection and assessment of life experiences of people with disabilities, in addition to law and policy analyses, and analyses of media representations of disability. With over 40 projects conducted all over the world, the DRPI approach has been supporting disability rights advocacy efforts while promoting the active participation of disabled people in the production and analysis of evidence about the status of their rights. In what follows we introduce the framework of indicators generated through this participatory methodology. First, however, we provide a more detailed note on the DRPI methodology, which informed and inspired this work, and discuss conceptual approaches and criteria for the development of human rights indicators.

MONITORING DISABILITY RIGHTS: THE DRPI APPROACH The methodology supporting the development of the disability rights indicators presented here is an international collaborative initiative which has been operating since 2001 to establish a monitoring system to address disability discrimination globally. Bringing together disabled persons and their organizations, scholars, and human rights activists, DRPI has developed an innovative methodology that places people with disabilities at the center of holistic disability rights monitoring approaches. Traditionally, human rights assessments rely on the work of international organizations, foreign ministries, and American or European research programs – not on local or national actors (Naval et al., 2008). The DRPI method, instead,

Developing a participatory indicators-based framework for monitoring disability rights  69 works to strengthen leadership among disabled people and their organizations in monitoring disability rights. As such, it adopts a bottom-up approach that ensures their active involvement in evidence-based assessments of human rights. Considering the multidimensionality and complexity of human rights, the DRPI approach entails three levels: individual, involving the collection and analysis of personal accounts of rights denial or realization; systemic, which encompasses a thorough review of disability-related law, policy, and programs; and societal, which comprises the analysis of media representations of disability, as proxies for social attitudes and beliefs about disability. For each of these levels, specific tools have been developed and are being used by people with disabilities and their allies worldwide to collect and analyze the data, notably: ● An interview guide to conduct semi-structured interviews with disabled people and gather their daily life experiences as well as a coding scheme to analyze and categorize the data collected. ● A law and policy template to guide the collection and analysis of law and policy. ● A coding scheme to assess, interpret, and categorize disability-related media stories. From 2013 to 2014, a DRPI monitoring project was undertaken in Portugal and data was collected across these three areas. The project gathered 60 in-depth interviews with people with disabilities aged 12 years and older, living in different regions of the country. To ensure diversity and balance, the sample was controlled for sex, age group, and type of impairment. In addition, the research involved an extensive examination of the legal and policy framework in place to address disability issues, and a compilation and analysis of disability-related news, published between 2009 and 2013 in the three print news media with the largest audience in the country. The semi-structured in-depth interviews were conducted by disabled people themselves after attending a week-long training to learn about the DRPI methodology and tools, and to practice interview skills. Each interview started with two broad questions: “What has brought you more satisfaction in life over the last five years? And what have been the major obstacles or barriers that you faced?” Typically, respondents listed two or three situations that interviewers then probed to explore their human rights implications. This free format enabled interviewees to identify the more relevant issues to them in terms of human rights experiences. Individual stories were then analyzed and grouped into one of eight life domains: access to justice; education; intimacy and family life; income security and support services; information and communication; social participation; health, habilitation, and rehabilitation; and work and employment. Each report was further categorized according to the assertion or denial of the following five human rights principles: ● Autonomy: making own choices independently. Autonomy or self-determination means that the person is placed at the center of all decisions affecting her life. ● Dignity: asserting the inherent worth of every person, regardless of the complexity of her needs. ● Participation, inclusion, and accessibility: organizing societal systems, both public and private, to enable all people to participate fully and effectively. To achieve full inclusion, an accessible, barrier-free physical and social environment is necessary.

70  Research handbook on disability policy ● Non-discrimination and equality: rights are guaranteed without distinction, exclusion, or restriction based on disability or race, sex, language, religion, political or other opinion, national or social origin, property, birth, age, or any other status. ● Respect for difference: involving acceptance of persons with disabilities as part of human diversity and humanity. The responsibility to change falls not on the individual but on the State and civil society, who must accept diversity and respond to the specific needs of the person with impairments. While legal and policy analyses are a conventional method in human rights monitoring studies, media analyses are less frequent, although they can offer important insights. Research conducted in various countries (e.g. in the USA: Zhang & Haller, 2013; in Canada: Devotta et al., 2013; in Portugal: Neca & Castro, 2012; in Lithuania: Guščinskienė & Žalkauskaitė, 2011; in the UK: Barnes, 1992) has revealed stereotypical portrayals of disabled people in popular culture and has called attention to the negative consequences of their continued use, both for disabled people and for society as a whole. As people with disabilities are often depicted as pitiable, passive, and dependent, incapable of participating in society as other citizens, these pervasive disabling imageries help to explain and justify their systematic exclusion from life in the community. In our research, media analyses provided an understanding of the current societal representations and attitudes towards disability and disabled people in Portugal: while overall, disability remains a relatively neglected topic in the press (less than 1% of all the stories published over the period under review involved disability), persons with disabilities were overwhelmingly portrayed as either victims or heroes, with a rights-based discourse relatively absent from the news framing used by journalists to discuss disability topics (Cunha & Pinto, 2017). This overall context is fundamental to understand the discrimination which disabled people encounter daily in Portuguese society. The triangulation of data from these three areas – individual, systemic, and societal – provided a holistic understanding of the human rights situation of people with disabilities in Portugal and enabled the identification of gaps and relevant issues for the realization of human rights of disabled people in this country (Pinto, 2014). In the analysis of data collected through the interviews, Work and Employment emerged as the domain of life where the greatest incidence of personal reports of discrimination was found. This knowledge was used as the basis to start developing the indicators framework advanced in this paper, which also focuses on this specific domain. Several drafts of the framework were then prepared by the research team and discussed and refined in a series of workshops involving national stakeholders, including representatives of disabled people’s organizations, statisticians, researchers, and policy makers. This participatory methodology provided yet another opportunity to ensure true ownership of the process and its outcomes, while enabling the construction of indicators that are both reliable and contextually relevant. Before describing this process in greater detail, let us now briefly discuss conceptual approaches to developing rights indicators.

CONCEPTUAL APPROACHES TO RIGHTS MEASUREMENT As Welling (2008) has pointed out, before deciding how to measure, it is important to define the underlying conceptual perspective about what to measure. A conceptual framework pro-

Developing a participatory indicators-based framework for monitoring disability rights  71 vides the structure to identify and prioritize the information for the development of adequate indicators (Welling, 2008). Several conceptual approaches are available for developing indicators. Green (2001), for instance, argues that human rights indicators can be conceptualized according to: ● The degree of fulfillment of obligations, that is, an assessment of the measures taken by the government to put in place a particular treaty; and ● The state of realization, that is, an assessment of how rights have been put into practice. This latter perspective tends to evaluate the supports provided, the public bodies and mechanisms available to submit complaints (Würth & Seidensticker, 2005), as well as the quality of the process, including how rights to non-discrimination, accountability, and participation are being granted (Green, 2001; Würth & Seidensticker, 2005). According to this view, human rights indicators ought to be developed by considering State obligations in relation to a particular Convention and in relation to the processes involved in implementing those rights, which requires collecting information about possible rights violations as experienced by rights holders on the ground. Landman (2004), in turn, identifies three distinct approaches. He maintains that human rights can be measured in principle, in policy, and in practice. Measuring rights in principle involves describing the formally declared commitments of the State, as these are laid out in national legislation and policy. This is important as enshrining rights in legal documents is a necessary step to protect and ensure them on the ground. However, it is rarely sufficient. Treaties’ supervisory committees usually consider reporting on the formal (or de jure) situation not enough and require more detailed information to portray the human rights situation of any given country (Alston, 1997). Assessing rights in policy provides an indirect measure of human rights. It involves looking at the institutional mechanisms that incorporate and shape commitments and obligations into public interventions led by the States to implement rights on the ground. Rights as policies include the set of human rights principles that inform their implementation, and the principles related to the application of public policies and interventions – their progressive and adequate implementation, as well as the principles of transparency and accountability. This is particularly important for disabled people. In fact, in the disability context, the availability of goods and services per se is not sufficient to guarantee the fulfillment of a right; equally important is the safeguarding principle of non-discrimination to guarantee the enjoyment of such goods and services (Malhotra & Fasel, 2005) and promote adequate responses to individual needs. In addition to these, the United Nations Committee on Economic, Social and Cultural Rights (UNCESCR, 1999) has identified four principles that should apply to public interventions related to the rights of people with disabilities. They are: ● Availability, as a guarantee of the sufficient quantity and context-appropriate means provided to ensure rights. ● Accessibility, as a guarantee of access to everyone, in terms of non-discrimination, physical accessibility, financial accessibility, and accessible communication and information. ● Acceptability, as a required quality based on the principle of human dignity. ● Adaptability, as the flexibility and ability that are needed to respond to individual needs within the diversity of social and cultural contexts.

72  Research handbook on disability policy Finally, the third approach – rights in practice – examines how formal rights commitments are enjoyed and exercised on the ground. According to Landman (2004), all three approaches are necessary but studies that combine and triangulate a variety of monitoring measures, although holding great promise for a better understanding of human rights protections and progress, are still relatively rare. The United Nations Office of the High Commissioner for Human Rights (OHCHR, 2012) adopts a similar perspective, emphasizing that approaches to measuring rights should be able to assess States’ commitments, States’ efforts, and the actual results of such efforts in promoting human rights. Hence, the framework advanced three categories of indicators: ● Structural indicators, reflecting “the ratification and adoption of human rights instruments and the creation of basic institutional mechanisms deemed necessary for the promotion and protection of human rights” (OHCHR, 2012, p. 34). ● Process indicators, measuring “‘duty’ bearers ongoing efforts to transform human rights commitments into the desired results” (OHCHR, 2012, p. 36). ● Outcome indicators, capturing “individual and collective attainments that reflect the state of enjoyment of human rights in a given context” (OHCHR, 2012, pp. 37–38). The configuration of structural–process–outcome indicators enables the measurement of the commitment of the duty-bearer to the relevant human right standard, the actual efforts undertaken to make that commitment a reality, and the results of those efforts over time, thus providing a thorough assessment of the steps taken by State parties in meeting their human rights obligations. This categorization offers the further advantage of rendering less opaque the notion of human rights, taking them beyond the strict sphere of legal discourses. Ultimately, this approach facilitates the mainstreaming of human rights in policy development and implementation (OHCHR, 2008). For all these reasons, we also considered this tripartite conceptualization when developing our framework.

CRITERIA FOR DEFINING INDICATORS AND TYPES OF INDICATORS Whether structural, process, or outcome, indicators are “windows opening to a larger reality” that “appear to be measuring more than what they say they measure” (Andersen & Sano, 2006, p. 12). For example, human rights indicators such as educational attainment of students with disabilities, percentage of fully accessible public buses, or violation of the prohibition of discrimination against people with disabilities in the workplace provide important information about the level of realization of the right to education, the right to mobility, and the right to work of disabled people, respectively. However, they also provide insight into a matter of larger significance, which is the degree of inclusion of people with disabilities in that same society. Defining a system of indicators is, thus, a complex task that poses multiple challenges. To obviate some of these difficulties, a useful criterion for developing human rights indicators is encapsulated in the acronym SMART (Andersen & Sano, 2006; Schultz, 2009). In other words, general requirements for developing indicators suggest that these must be specific, that is, precise and accurate, measurable, in the sense that it must be possible to measure an

Developing a participatory indicators-based framework for monitoring disability rights  73 indicator at a reasonable cost and effort, attainable, that is, realistic to achieve, relevant to the objective or output whose fulfillment they seek to measure, and time framed. The application of these criteria may not, however, preclude some degree of subjectivity in the selection of indicators. Indeed, as Cobb and Rixford (1998, p. 17) reminded us in their summary of earlier work on the development of indicators, “there’s no such thing as a value-free indicator” since the very act of deciding what and how to count already involves making value judgments. Therefore, what is important is to open values, methods, and measures up for public scrutiny, so that others can assess their validity. Another important distinction is often drawn between context-specific and universal indicators. Many scholars and human rights advocates (e.g. Ignatieff & Desormeau, 2005; Kalantry et al., 2009; OHCHR, 2008; Xu, 2017) agree that both are useful and necessary. Universal indicators provide the basis for international comparisons, which makes it possible to highlight disparities around the globe in the fulfillment of specific rights. However, indicators need not be universal if the aim is to measure compliance and determine whether a State is fulfilling or not its obligations, rather than whether it is complying with a treaty to a greater or lesser extent than other States Parties. Therefore, using context-specific indictors leads to a selection of indicators that is likely to be more culturally sensitive, and more appropriate and relevant for the situation of each State and the treaty provisions in question. A further classification distinguishes between indicators that are of a quantitative and qualitative nature. Quantitative indicators measure change through numerical or statistical facts (i.e. number of accessible buses, percentage of people with disabilities participating in community meetings, etc.). They rely on data usually easy to collect and calculate, which can be seen as an advantage, but they also present some disadvantages – the largest one being their tendency to “‘fix’ their objects in time and space and therefore miss, if not dehumanize, the transformative and qualitative nature of such elements as … culture and values, participation or social creativity” (Kapoor, 1996, p. 9). As it has been noted by Naval et al. (2008), there are many dimensions of human rights that remain unquantifiable, and therefore quantitative indicators cannot provide the full picture – more sophisticated frameworks are needed to tackle the complexity of human rights assessment. Along similar lines, the OHCHR Resource Package (2020) calls attention to the importance of gathering qualitative data, namely through focus groups, interviews, and case studies, to complement statistical and numerical indicators. Some of the problems found with quantitative indicators are better addressed by qualitative indicators whose aim is to capture people’s beliefs, opinions, perceptions, and narratives. Kapoor (1996, p. 9) discusses two types of qualitative indicators: quantifiable ones and participatory ones. Qualitative-quantifiable indicators are those that can be quantified through such instruments as public opinion polls, attitude surveys, and participant observation. Provided that the number of observations is large enough, qualitative-quantifiable indicators allow for greater levels of disaggregation (by sex, age, disability type, and so on) than quantitative indicators do. For instance, rather than only counting the percentage of workers with disabilities to measure the participation of people with disabilities in the labor market, a survey of employers (e.g. asking their opinion about disabled workers) may reveal important information about the dynamics of labor inclusion of this group of the population. Still, Kapoor recognizes, this ‘top-down’ approach may be limiting, as it imposes “artificial and rigid categories on what are fluid human rights … processes” (1996, p. 9). Qualitative-participatory indicators deal more appropriately with such weakness “by including the perspectives of all stakeholders, especially the program beneficiaries” (p. 10). Thus, the main strengths of participatory indi-

74  Research handbook on disability policy Table 6.1

Overarching framework to measure disability rights

Structural Indicators ●Identification of gaps between international treaties on the human rights of persons with disabilities and national laws ●Identification of gaps and inconsistencies in the national legislation ●Identification of regulation to support implementation Process Indicators ●Identification of the actors/organizations responsible for implementation ●Indicators based on budget allocation ●Coverage of targeted population groups under public programs ●Human rights complaints received and the proportion redressed ●Incentive and awareness measures extended by the duty-bearer to address specific human rights issues ●Indicators reflecting functioning of specific institutions (e.g. legal system) Outcome Indicators ●Identification of the degree of completion of public interventions on the human rights of persons with disabilities (ratio objectives/outcomes) ●Type and number of problems solved or intervened upon ●Realization/denial of human rights, as experienced by persons with disabilities Source: Adapted from OHCHR (2012).

cators are their ability to “capture how (i.e. descriptively, not quantitatively) people feel about their rights, freedoms, (dis)empowerment or responsibilities” (Kapoor, 1996, p. 10), their capacity to reflect local understandings and meanings of human rights, and their increased appropriateness, usefulness, and relevance at national or local level (OHCHR, 2008; Xu, 2017). Nevertheless, participatory indicators are often criticized for being based on “subjective” rather than objective assessments, although they are no more prejudicial than quantitative ones, which also categorize data according to preconceived categories and values predefined by researchers, international human rights agencies, or governments. Despite the advantages that they present, the use of participatory indicators also raises some difficulties mostly related to the time and cost involved in consulting a large and diverse constituency, particularly to ensure that the voice of hard-to-reach groups is included; finally, they create limitations for developing international comparisons (Kapoor, 1996). Thus, in designing a set of human rights indicators it is important to strike a balance, not just between qualitative and quantitative indicators, but also between universally relevant and contextually specific indicators, as both kinds are needed (Ignatieff & Desormeau, 2005; OHCHR, 2008, 2020; Xu, 2017). To provide a comprehensive assessment, the framework that we developed is based on participatory qualitative indicators, but also encompasses more traditional, universal, quantitative, and qualitative-quantifiable indicators.

THE OVERARCHING FRAMEWORK In this section, we outline the overarching theoretical framework that underlies the list of participatory indicators we devised. We adopted the three-level framework proposed by the Office of the High Commissioner for Human Rights on its work on the development of indicators at the international level (OHCHR, 2012, 2020). This approach offers a coherent and

Developing a participatory indicators-based framework for monitoring disability rights  75 clear structure while facilitating international comparisons and the subsequent development and adaptations of the framework, whether internationally or at the national level. Table 6.1 summarizes the overarching framework adopted. As it illustrates: ● Structural indicators provide an assessment of the international human rights commitments of the State and of general legislation and regulations that enshrine the rights of citizens with disabilities. ● Process indicators provide an assessment of the way legislation is implemented and the means and resources associated with this process including the degree of participation of a variety of actors (particularly persons with disabilities), the instruments related to the implementation of norms, and their enforcement mechanisms. These indicators may take the form of descriptive qualifiers, statistics, and societal representations (notably those collected through the media). ● Outcome indicators assess the outcomes of public interventions and the impact of these interventions on the exercise of human rights of persons with disabilities in particular contexts. They involve statistics, categorized life experiences reflecting the degree of fulfillment of the human rights of persons with disabilities as experienced in their daily life, and societal representations, translated by the way in which issues of disability and human rights are talked about by the media.

DEVELOPING THE FRAMEWORK: IDENTIFYING ATTRIBUTES AND SELECTING INDICATORS Once we had established the overarching framework, we proceeded to its operationalization through the selection of indicators. The guidelines provided by the OHCHR (2012) recommend the identification of rights’ attributes as a necessary step to develop indicators. This process requires a thorough examination of the content or substance of the human right we want to measure. Each human right involves a set of attributes, which seek to translate the essence of the standard to which they refer. Thus, the identification of attributes needs to be based on a comprehensive review of the principles and laws from which the standard stems. It is through these attributes that a link or relationship is established between the legal pattern and the indicators. The selected indicators must be mutually exclusive and restricted to a limited number. Well-articulated attributes promote the identification of more relevant indicators (OHCHR, 2012, p. 75). However, the traditional approach to the identification of attributes becomes insufficient in the disability context. Indeed, as many have noted (e.g. Astorga Gatjens, 2012; Mégret, 2008; OHCHR, 2009; Stein & Lord, 2010), the CRPD stands out among international human rights conventions for its articulation of monitoring obligations. Paragraph 3 of Article 33 specifically requires that “civil society, and in particular persons with disabilities and their organizations, shall be involved and participate fully in the monitoring process” (United Nations, 2006; our emphasis). This represents an innovative feature of the CRPD and reflects the cross-cutting principle of the Convention that disabled people must participate in all decisions impacting them (Stein & Lord, 2010). In this sense, the participation of people with disabilities in processes leading to the conceptualization of disability rights indicators must be ensured too.

76  Research handbook on disability policy Therefore, further to the identification of attributes based on analyses of the core content of a particular human right, we gathered the insights of disabled people about the realization of their rights, through the collection and analysis of personal stories. The triangulation of top-down and bottom-up approaches (Kapoor, 1996) grants a more contextualized identification of relevant attributes, one that considers the actual meaning of disability rights in the daily life of those most affected. As stated above in this chapter, we drew from data gathered through the DRPI monitoring project undertaken in Portugal in 2013–2014. This study provided an identification of the major gaps and most relevant human rights issues for disabled people in Portuguese society, through the personal accounts of those who experience disability. In this way, the voice of people with disabilities was visibly included in the design of the indicator-based framework itself (see Figure 6.1).

Figure 6.1

Methodology for developing a participatory indicator-based framework for monitoring disability rights

Keeping with the DRPI participatory approach, the decision to focus on the right to work was also directly related to the findings of the Portuguese monitoring study. In fact, through the analyses conducted on the personal stories gathered, Work and Employment emerged as the domain of life where we found the greatest incidence of reports of discrimination or, in other words, the domain in which rights-as-practices indicated one of the highest levels of non-compliance with rights-as-standards. The research further identified the human rights principles which were more often infringed within this specific domain, and the corresponding

Developing a participatory indicators-based framework for monitoring disability rights  77 situations that were considered more grievous. These included reports of violations of the following principles: (a)

Dignity, particularly in terms of: (i) Feelings of depreciation/humiliation (due to the lack of skills’ recognition in access to employment and career development). (b) Inclusion and Accessibility, particularly in terms of: (i) Exclusion from the labor market on the basis of disability; (ii) Lack of accessibility in the workplace. (c) Respect for Difference, particularly in terms of: (i) Disrespectful and abusive behaviors in the workplace (by colleagues and management); (ii) Persistence of prejudice and negative stereotyping of disabled people in the workplace. (d) Discrimination and Inequality, particularly in terms of: (i) Unequal treatment regarding employment. These research outcomes guided the process of selection of attributes and indicators, which was also grounded in a review of the core content of the right to work, as outlined in the CRPD and discussed in the General Comment No. 23 of the United Nations Committee on Economic, Social and Cultural Rights (2016) on the right to just and favorable conditions of work. Through an interactive process involving disabled people and other relevant stakeholders (as depicted in Table 6.2), five attributes were identified to assess the content of the right to work for people with disabilities. They are: ● ● ● ● ●

Access to adequate employment; Adequate and fair work conditions; Accessibility to the workplace; Initial and continuous vocational training; and Protection from unemployment/undignified work.

Some of the attributes identified in this project resonate with previous work on the development of indicators for the human right to work (see for example OHCHR, 2012, 2020); additionally, a new one was created to specifically address disability in this context – the attribute accessibility to the workplace. This attribute was deemed a core element of the right to work, as spelled out in article 27 (i) of the CRPD which specifically requires that “reasonable accommodation is provided to persons with disabilities in the workplace”. As Table 6.2 shows, 33 indicators were then selected to assess the right to work for disabled people in terms of the tripartite approach of rights-as-commitments (structural indicators), rights-as-efforts (process indicators), and rights-as-outcomes (outcome indicators). The framework is a combination of universal indicators (e.g. indicator 1, 11, 12, or 30) and contextually specific indicators (e.g. indicator 10, 13, or 15), and involves both quantitative (e.g. indicator 16, 18, or 27) as well as qualitative data, collected through the narratives of people with disabilities reporting their experiences of rights realization/denial (indicator 9, 20, 22, 23, 26, 29, 32, and 33), thus strengthening the level of participation in the approach developed. The framework was pilot-tested in Portugal. In undertaking that exercise, we found increasing difficulties in populating the indicators as we moved from structural to process and then

Structure Indicators

Initial and continuous vocational training

Protection from unemployment/ undignified work

Indicator 1 – International conventions ratified by the Portuguese State (date of ratification) Indicator 2 – Constitution of the Portuguese Republic and general legislation about the right to non-discrimination (date of entry into force and coverage) Indicator 3 – Right to non-discrimination laid down in the labor code (date) Indicator 4 – Accessibility norms about the built environment, public spaces and public transportation enshrined in the legislation Indicator 5 – Specific regulations on the right to work, work conditions and the adequacy of workplaces and working time for persons with disabilities (date of entry into force and coverage) Indicator 6 – Number of organizations representing disabled people involved in the promotion and protection of the right to work       Indicator 7 – Collective employment agreements addressing work conditions for disabled people

Accessibility to the workplace

Access to adequate work

 

Adequate and fair work conditions

A participatory indicators-based framework to measure the right to work for people with disabilities

Table 6.2

78  Research handbook on disability policy

Process Indicators

 

Adequate and fair work conditions

Accessibility to the workplace

Initial and continuous vocational training

Protection from unemployment/ undignified work Indicator 8 – Number and percentage of complaints about discrimination in the workplace involving disabled people and their respective rate of response Indicator 9 – Media representations about work and employment and people with disabilities   Indicator 15 – Total and Indicator 13 – Total Indicator 10 –Total and   percentage of the annual and percentage of the percentage of the annual public budget allocated to annual public budget public budget allocated to allocated to improving vocational training of people support employment of with disabilities accessibility in the people with disabilities Indicator 16 – Total and workplace Indicator 11 – Total and percentage of employed Indicator 14 – Total percentage of people people with disabilities who and percentage of with disabilities receiving attended trainings (year) workplaces audited effective support for their Indicator 17 – Total and that complied with (re-)entry into the labor percentage of unemployed accessibility norms market (year) people with disabilities who and percentage of Indicator 12 –Total and attended trainings (year) audits resulting in percentage of people with administrative action or disabilities who moved prosecution from precarious to stable contracts (year)

Access to adequate work

Developing a participatory indicators-based framework for monitoring disability rights  79

Initial and continuous vocational training Indicator 27 – Number and percentage of disabled people employed after attending training Indicator 28 – Number and percentage of disabled people who improved their level of qualification after completing training Indicator 29 –Categorized personal accounts about completion of vocational training programs and their impact on workers’ employability and career

Accessibility to the workplace Indicator 24 – Number and type of completed interventions to improve accessibility in the workplace Indicator 25 – Total and percentage of the government budget spent on the acquisition of technical devices for employment and vocational training Indicator 26 – Categorized personal accounts about situations of lack of accessibility in the workplace and their resolution

Adequate and fair work conditions Indicator 21 – Number of resolved discrimination claims related to the workplace, by type of resolution Indicator 22 – Categorized personal accounts of discrimination and inequality in work conditions and their resolution Indicator 23 – Categorized personal accounts of discrimination and inequality in employment relations

Access to adequate work

Indicator 18 – Percentage of employed disabled people, by type of impairment, gender, age, qualifications, place of residence, type of contract Indicator 19 – Percentage of unemployed disabled people Indicator 20 – Categorized personal accounts about experiences related to access to employment

Source: Adapted from OHCHR (2012).

Outcome Indictors

 

Protection from unemployment/ undignified work Indicator 30 – Number and percentage of disabled people receiving unemployment benefits Indicator 31 – Number and percentage of disabled people currently attending training activities after losing employment Indicator 32 – Categorized personal accounts of dismissal from disabled people Indicator 33 – Categorized personal accounts of exploitation, harassment, and violation of physical and moral integrity in the workplace from disabled people

80  Research handbook on disability policy

Developing a participatory indicators-based framework for monitoring disability rights  81 outcome indicators – disaggregated data on disability in Portugal (as in many other countries) is lacking. Nevertheless, the integration of the three types of indicators (structure, process, and outcome) and the integration of quantitative and qualitative data provided a clearer picture of the status of the human right to work of people with disabilities than would have been possible if only structural indicators and quantitative data were used. The qualitative reports added depth to the monitoring process, illuminating the social relations and processes that underlie the realization of this right for disabled people in their daily life. The picture that emerged indicated that a wide gap can be found between what the Portuguese State committed to by signing and ratifying the CRPD, and the actual enjoyment of the right to work by people with disabilities in Portugal. This is plainly illustrated by examining just a few indicators. For instance, while prohibition of discrimination is enshrined in the Portuguese labor code (as per indicators 2 and 3) and accessibility norms are in place (indicator 4), reports of disabled people about their working conditions reveal the persistence of unequal and discriminatory treatment in the workplace, ranging from attitudes of prejudice, devaluation, and the non-recognition of working skills, to harassment and exploitation as well as exclusion due to lack of accessibility and denial of reasonable accommodation (indicators 22, 23, 26, and 33). Looking at selected process indicators, in turn, revealed some of the factors that lie behind these gaps – the lack of mechanisms to enforce accessibility legislation (indicator 14) and the reduced budget allocated to support vocational training, employment, and accessibility in the workplace for people with disabilities (indicators 10, 13, 14, and 15). In short, the framework enabled a comprehensive perspective, not just of the nature and scope of the problems at stake preventing the enjoyment of the right to work for disabled people in Portugal, but also of their underlying causes and processes. This information is very relevant to establish who is accountable for current abuses, and to act to prevent violations of these rights in the future.

CONCLUDING REMARKS: THE POTENTIAL OF THE PARTICIPATORY INDICATORS-BASED FRAMEWORK Monitoring the rights of disabled people became an obligation for the increasingly large number of countries signatory to the Convention on the Rights of Persons with Disabilities. To measure the progress achieved in the implementation of rights for this marginalized group, relevant and robust indicators are needed. The participatory indicators-based framework proposed in this chapter addresses this challenge with innovation, by bringing forward the voice of disabled people in the process of selection and development of indicators. While the set of indicators advanced in this chapter is particularly relevant to the Portuguese context and may require some adjustment when applied to different countries, we believe that the methodology proposed is advantageous for all those who are undertaking a similar task in other countries or parts of the world. In fact, the involvement of disabled people in all steps of the monitoring process, as well as the mix of quantitative and qualitative, universal, and contextual indicators proved to be not just possible, but indeed necessary to provide a full picture of the status of implementation of the human right under analysis. The information provided by this participatory indicators-based framework can be useful at various levels: it helps with establishing the accountability of duty-bearers for their duties to protect, promote, and fulfill human rights; it can inform strategies to implement rights and set

82  Research handbook on disability policy priorities of action in the face of scarce resources; and it enables the measurement of progress or decline in the realization of the right to work for people with disabilities (Hines, 2005). Importantly too, as the framework is driven by the aggregated outcomes of reports gathered from disabled people’s accounts about their own human rights experiences, it brings forward their voices to the center of monitoring processes, giving expression to the CRPD obligation of involving people with disabilities in all decision-making processes that concern them. It is important to understand, however, that we do not regard this framework as a ‘fixed’ or ‘final’ list, not even for Portugal, but as one that will continue to be periodically reviewed and updated. The selected indicators aim to put the spotlight on key human rights issues and concerns for disabled people, and as such they need to be updated at regular intervals to maintain their relevance. Moreover, similar frameworks for other relevant areas of disability rights still need to be developed, which opens new avenues for future research. It is our hope that this work provides a useful template and encourages others to pursue this goal.

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7. Disabled person-led monitoring of the UNCRPD in Aotearoa New Zealand: maximising the potential of civil society in the implementation of Article 33.3 Robbie Francis Watene, Brigit Mirfin-Veitch and Umi Asaka

INTRODUCTION In 2008, Aotearoa New Zealand became one of the first countries in the world to sign and ratify the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) (Bell, McGregor & Wilson, 2015). In doing so it signalled a commitment to Article 33 – an innovative article within the UNCRPD that articulates how State Parties should promote, protect and monitor the progressive realisation of the Convention (United Nations, 2006). Having played an important role in the development of the Convention, Disabled People’s Organisations (DPOs) were quick to submit a report to the New Zealand Government outlining ways in which civil society could effectively fulfil its monitoring duties, as mandated under Article 33.3 of the UNCRPD (McGregor, 2016). With agreement from the New Zealand Government and funds to match, a group of DPOs set about developing a system for monitoring the progressive realisation of the Convention in Aotearoa New Zealand; an evidence-based research project led by disabled people, for disabled people. However, though the original intent of disabled person-led monitoring in Aotearoa New Zealand was to contribute evidence of rights violations to international reporting cycles via the International Monitoring Mechanism (IMM), opportunities to influence policy at a domestic level have also arisen – raising important questions about the role of monitoring, methods of monitoring, and also the intended audience of monitoring findings. This chapter explores these questions by first drawing on recent commentaries around the UNCRPD and human rights model of disability. It then investigates Aotearoa New Zealand’s role in implementing the UNCRPD, including its most recent cycle of disabled person-led monitoring on disabled people’s right to the highest attainable standard of health (Article 25). The disabled person-led monitoring is then considered alongside the Government’s concurrent work to review and reform the national health and disability system. By analysing these initiatives through a disability rights lens, the unlimited potential of disabled person-led monitoring begins to emerge – both at an international level and within domestic policy.

BACKGROUND – UNDERSTANDING DISABILITY AS A HUMAN RIGHTS ISSUE The way in which disability and impairment is understood and responded to by society has a significant impact on the way disabled people navigate and experience our lives and the 85

86  Research handbook on disability policy communities we live in. Within disability studies, ‘heuristic devices’ are used to help decipher these understandings (Barnes, 2008, p. 4). Commonly referred to as ‘models of disability’, heuristic devices represent particular ways of thinking about impairment and disability (Llewellyn & Hogan, 2000). Although they are not theory or explanations in themselves, they are, however, important. Heuristic devices – such as models of disability – can be indicative of underlying structures for large and complex diagnostic and defining systems with significant political, social and financial consequences. They also determine causal and responsibility attributions, guide legislation and policy, develop research agendas, inform welfare systems, provide frameworks for professional and clinical practice, and contribute to administrative and social planning (Smart, 2009). Some of the more commonly referenced models include the moral model of disability, which considers disability through a theological lens (Retief & Letšosa, 2018); the charity model of disability where impairment is perceived as a tragedy that must be alleviated by charity as the name suggests (Clare, 2001); and the medical model of disability which understands impairment as an individual pathological problem that can be managed or fixed through medical intervention (Goodley, 2017). More recently, the disability rights movement ushered in a new way of thinking about disability, known as the social model. Originating in the UPIAS/DIA movements, the social model presents disability as a form of socially created oppression (Lawson & Beckett, 2021). Importantly, it differentiates between impairment and the disabling barriers that exist in society (Oliver, 2013), and challenges culturally and structurally violent notions of disability (Francis, 2019) by embracing the idea that impairment is a natural variation of human life. As a result, addressing and responding to the inequity and inequality experienced by people with impairments is the responsibility of society, and not that of the individual. While it is not without its critiques, the social model of disability is a heuristic device that has undoubtedly helped to form the foundation from which the human rights model of disability has emerged. However, the human rights model is considered to be more comprehensive than the social model, in that it encompasses both sets of human rights, civil and political as well as economic, social and cultural rights (Degener, 2016). It sees equity and rights as inclusive of all people, and that human rights are universal, inherent and inalienable (Al Ju’beh, 2017). Grounded in equal opportunity theory, the human rights model examines the right to self-determination and society’s collective responsibility for ensuring fair prospects of self-determination for all people. It recognises that some individuals and groups of people experience unfair advantages in life for reasons beyond their control. Consequently, society has a collective obligation to improve the prospects of self-determination for individuals and groups who do not have said advantages (Mithaug, 1996). In the context of disability, disabled people are considered central decision makers, citizens and as rights holders, while seeking to transform unjust systems and practices (Al Ju’beh, 2017). This includes: ● ● ● ●

Recognising the existence of structural discrimination against disabled people in society; Acknowledging the collective strength of disabled people and people in general; Supporting disabled people to determine our own agenda; Recognising legislation as a basis for establishing the visibility of the democratically enforceable rights of disabled people; ● Bringing legal sanction against disability discrimination (Johnstone, 2001).

Disabled person-led monitoring of the UNCRPD  87 Importantly, the human rights model holds that equal opportunity is not a question of charity to be bestowed on marginalised populations, but a human right. The model is based on empowerment (referring to the participation of disabled people as active stakeholders) and accountability (the duty of society to implement rights and to justify the quality and quantity of their implementation) (Miller & Ziegler, 2006). While some theorists have framed the human rights model as an extension of the social model (for example, see Degener, 2016), more recent commentaries have reflected on the rights approach as its own distinct model. As discussed by Lawson and Beckett (2021) the social model is a descriptive and heuristic device that operates to identify where policy reform is needed. The human rights model, on the other hand, is a prescriptive model of disability policy: ‘Accordingly, the focus of the human rights model is not the concept of disability. Rather it provides guidance (and requirements) on policy responses to disability. Consequently, it can be viewed not as a model of disability but as a model of disability policy’ (p. 364). This shift in thinking is important, as it has served to strengthen the framework from which the disabled person-led monitoring of the UNCRPD in Aotearoa New Zealand has been able to progress in the way that it has. However, before reflecting on Aotearoa’s approach to Article 33, let us first take a moment to briefly explore its relationship with the UNCRPD itself, and the impact this has had on bringing life to Article 33 of the Convention.

THE UNITED NATIONS CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES Between 2001 and 2006, both the New Zealand Government and New Zealand’s civil society played an important role in the development of the UNCRPD. As one of a few countries with a national disability strategy grounded in the social model of disability that predated the Convention, we were well placed to inform the discussions on a new disability Convention and the drafting of its content. This included leadership by Ambassador Don MacKay who chaired the Ad Hoc Committee considering the new disability convention and the working group that drafted the Convention’s text (Kayess & French, 2008; MacKay, 2006; McGregor, 2016), as well as a strong contingent of civil society and civil servants in the Convention’s Ad Hoc Committee and Working Group. Following its launch in 2006, the Government of New Zealand then became one of the first to ratify the UNCRPD in 2008, before further indicating its commitment by ratifying the Convention’s Optional Protocol in 2016. When considering the UNCRPD from a human rights perspective, it is interesting to note the different roles that the social and human rights models played in its formation. As observed by Lawson and Beckett (2021), the operation of the social model helped to generate the political impetus for a disability-specific convention. The social model was also evident in the drafting of the Convention, particularly during the Ad Hoc Committee debates when ensuring solidarity between different impairment groups and defining disability (for example, in the Preamble). Even so, the social model itself was not necessarily referenced explicitly during Ad Hoc Committee debates, nor within the Convention’s content, or subsequent concluding recommendations provided by the UNCRPD Committee to States Parties in the years that have followed.

88  Research handbook on disability policy On the other hand, Lawson and Beckett (2021) describe the human rights model as an ‘oppositional device operating to challenge technologies of government which marginalise, disadvantage and disempower people’ (p. 369). Drawing on the work of Foucault, they liken the human rights model to a technology (or procedure) of discipline. That is, techniques such as procedural codification, surveillance, examination and mechanisms for reward or punishment, which are used to correct undesirable states and behaviours. For example, under Article 33.3 of the Convention it is civil society’s responsibility to monitor the Convention, while Article 34 articulates the State’s responsibility to report on ‘measures taken to give effect to its obligations under the present Convention’ – both being procedures that might be described as technologies or procedures of discipline. In addition to being entrenched in the content of the UNCRPD itself – particularly the monitoring and reporting processes – the human rights model is also routinely referenced within the UNCRPD Committee’s Concluding Observations. For example, States are often praised for progressively realising their obligations under the UNCRPD, and criticised for regressive developments and inaction (Lawson & Beckett, 2021).

MONITORING DISABILITY RIGHTS AND THE HUMAN RIGHTS MODEL OF DISABILITY In a broad sense, the United Nations defines monitoring as the active collection, verification and immediate use of information to address human rights problems. It can involve gathering information about incidents, observing events such as trials, site visits, dialogue with governments and authorities, and the pursuit of remedies to rights violations and abuses (Office of the High Commissioner for Human Rights, 2001). Despite advancing the ‘foundation of freedom, justice and peace in the world’ (United Nations, 1948), however, UN conventions and treaties have long been criticised for lacking the authority to ensure compliance and effectiveness within the States that ratify them. For many countries, human rights laws often represent little more than a paper victory; a statute that is signed and looks good on paper but fails to be implemented in real life (Perlin, 2012, 2014). One way that this issue has started to be addressed, is through the strengthening of National Human Rights Institutions (NHRIs). In 1991, the United Nations Commission on Human Rights hosted its first International Workshop on National Institutions for the Promotion and Protection of Human Rights. The workshop brought together national and regional institutions involved in the protection and promotion of human rights, to review patterns of cooperation of institutions, such as the United Nations and its agencies, and to explore ways of increasing their effectiveness in monitoring human rights. As a result of these workshops, a list of recommendations was produced, leading to the adoption of the Paris Principles in 1993. The Principles constitute a set of internationally recognised standards to assess the credibility, independence and effectiveness of NHRIs. Importantly, the Principles give NHRIs the power to investigate and make recommendations to States on matters relating to human rights issues while maintaining the power of investigation, independence and adequate resources (Office of the High Commissioner for Human Rights, 1993). In short, NHRIs are established by States for the specific purpose of: advancing and defending human rights at the national level, and are acknowledged to be one of the most important means by which States bridge the implementation gap between their international

Disabled person-led monitoring of the UNCRPD  89 human rights obligations and actual enjoyment of human rights on the ground. (Global Alliance of National Human Rights Institutions, 2017, para. 2)

The relevance of the Paris Principles to the UNCRPD and disability rights monitoring should not be underestimated. During the drafting of the Convention, Ad Hoc Committee members were ‘mindful of the perceived “failures” of the existing system of international monitoring’ (Quinn, 2009, p. 227), with both NHRIs and civil society being challenged to come up with an innovative system for ensuring that the Convention could gain real traction not just internationally, but also domestically (Quinn, 2009). After much deliberation, a ‘double track control’ was introduced to the content of the Convention that allowed for two different, yet complementary, monitoring mechanisms that would operate at international and national levels (Manca, 2017, p. 593). International Monitoring As outlined in Articles 35 and 36 of the Convention, the first monitoring track provides for an international monitoring mechanism. That is, an independent panel of disability experts known as the Committee on the Rights of Persons with Disabilities. Based in Geneva, Switzerland, the role of the Committee is to examine State reports on their efforts to progressively realise the articles contained within the Convention; ask questions of States; provide follow-up recommendations and Concluding Observations; receive communications from individuals or groups (as mandated by the Optional Protocol); initiate inquiries; consult with stakeholders; and adopt statements (General Comments) (Manca, 2017). Since signing and ratifying the UNCRPD and its Optional Protocol in 2008 and 2016 (respectively), the New Zealand Government has completed one reporting cycle (2014) and was expected to engage in a second reporting cycle in 2019. However, due to unavoidable circumstances, the second cycle of monitoring has been postponed. Although this method of international monitoring is not new to the United Nations, when combined with the second track of national monitoring the UNCRPD represents a new and innovative approach to ensuring State compliance of human rights. National Monitoring – Article 33 The second track of monitoring is regulated by Article 33 of the Convention (Manca, 2017): Article 33 – National implementation and monitoring 1. States Parties, in accordance with their system of organisation, shall designate one or more focal points within government for matters relating to the implementation of the present Convention, and shall 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. 2. States Parties shall, in accordance with their legal and administrative systems, maintain, strengthen, designate or establish within the State Party, a framework, including one or more independent mechanisms, as appropriate, to promote, protect and monitor implementation of the present Convention. When designating or establishing such a mechanism, States Parties shall take into account the principles relating to the status and functioning of national institutions for protection and promotion of human rights. 3. Civil society, in particular persons with disabilities and their representative organisations, shall be involved and participate fully in the monitoring process (United Nations, 2006).

90  Research handbook on disability policy In short, ‘Article 33 CRPD provides that States should have national structures for the implementation and monitoring of the Convention. [...] it requires both the creation of focal points in the public administration and that of independent mechanisms outside of it, while guaranteeing the participation of civil society’ (de Beco & Hoefmans, 2013, p. 18). However, the way in which Article 33 is delivered remains flexible, depending on existing state structures and political or organisational contexts. For example, while the Convention is not exactly clear on what a ‘focal point’ is, a subsequent Handbook for Parliamentarians on the Convention on the Rights of Persons with Disabilities (United Nations Department of Economic and Social Affairs, Office of the High Commissioner for Human Rights & Inter-Parliamentary Union, 2007) suggests that a focal point could be an individual or section within an existing ministry, or an institution solely dedicated to disability issues (Manca, 2017). Similarly, the second part of Article 33 leaves the interpretation of ‘one or more independent mechanisms’ to the discretion of the State. For example, states may choose to extend the mandates of existing human rights mechanisms, or instead assign the task of promotion, protection and monitoring of the Convention to a new mechanism (Manca, 2017; Office of the High Commissioner for Human Rights, 2009). The third part of Article 33 concerns the involvement of civil society in monitoring efforts. Again, the Convention stops short of defining what this constitutes exactly but clarifies that disabled people and their representative organisations ‘shall be involved and participate fully in the monitoring process’. The novelty and scope of Article 33 has been praised by the United Nations, rights advocates and scholars alike (Lorion, 2019), noting that the ‘inclusion of norm detailing national implementation and monitoring structures and their functions at national level is unprecedented in a human rights treaty’ (Office of the High Commissioner for Human Rights, 2009, p. 5). According to Manca (2017) there are many ways in which civil society might contribute to national monitoring. For example, civil society may assist State reporting procedures and the dissemination of findings and Concluding Observations; help to monitor the implementation of decisions made by the UNCRPD Committee in response to individual complaints; formulate proposals for the implementation of the Convention; assist in collecting data; and consult with States on the realisation of Article 33. One of the methods used to monitor disabled people’s human rights is called Disability Rights Promotion International (DRPI). The DRPI model was developed in 2002 as a result of a discussion at a seminar hosted by the United Nations Special Rapporteur on the Rights of Persons with Disabilities, Dr Bengt Lindqvist, prior to the establishment of the UNCRPD (Pinto, 2015). The DRPI aims to: provide a voice to marginalised populations; enhance public awareness by documenting abuses and violations; reinforce a collective identity amongst the disability community; and support efforts to achieve social justice (DRPI, n.d.). The approach utilises both qualitative and quantitative research to achieve these goals. Since the commencement of the UNCRPD, DRPI has been adapted as a methodology to monitor the implementation of the UNCRPD in numerous countries across five different continents (Pinto, 2015). Importantly, the DRPI methodology provides a framework for ensuring that Article 33.3 is carried out by disabled people themselves. In summary, ‘Article 33 CRPD offers those actors concerned with the promotion and protection of disability rights the unique opportunity to urge States to abide by their commitments

Disabled person-led monitoring of the UNCRPD  91 through their participation in various bodies, thereby making the Convention a powerful tool for their action’ (de Beco & Hoefmans, 2013, pp. 19–20).

ARTICLE 33 IN AOTEAROA NEW ZEALAND Soon after the Convention’s launch in 2006, Aotearoa New Zealand’s Disabled People’s Organisations that had actively contributed to the Convention’s drafting came together again under the umbrella of the ‘Convention Coalition’ to discuss what an effective delivery of Article 33 might look like within the context of Aotearoa New Zealand. They then submitted a report to the Office for Disability Issues – the newly appointed focal point within Government (according to Article 33.1) – requesting that the New Zealand Government form an active partnership with the Coalition in order to progressively realise their obligations under the Convention, particularly in relation to national monitoring, to which the Government agreed (McGregor, 2016). Further to this, in 2011 the New Zealand Government took steps towards implementing Article 33.2, by designating an independent mechanism. The Independent Monitoring Mechanism (IMM) is comprised of three different entities, which all play different roles within the mechanism. The New Zealand Human Rights Commission’s (Aotearoa New Zealand’s NHRI) primary role is to promote and protect human rights, including identifying areas where disabled people experience abuse and denial of their rights; the Office of the Ombudsman is in charge of monitoring the progress of UNCRPD implementation within the wider State sector and to make recommendations for improvements (Gough, 2015); and ‘the disabled peoples’ organisations, who are at any particular time members of the Convention Coalition operating under a Memorandum of Understanding’ (New Zealand Gazette, 2011, article C), provide the voices of civil society. In line with the Paris Principles, the IMM is resourced by the New Zealand Government, while remaining independent of political influence (Francis Watene, Mirfin-Veitch & Asaka, 2021). With regards to Article 33.3, in Aotearoa New Zealand this important role has been primarily fulfilled by the third component of the IMM – formerly the Convention Coalition, now known as the New Zealand Disabled People’s Organisation Coalition (DPO Coalition). Having accepted the recommendations made in the Coalition’s report, in 2010 the New Zealand Government granted the Coalition funding to carry out civil society monitoring duties under Article 33.3. The Coalition is currently comprised of seven organisations that meet Aotearoa New Zealand’s criteria for a DPO: Association of Blind Citizens New Zealand (Blind Citizens NZ); Balance Aotearoa; Deaf Aotearoa; Disabled Persons Assembly NZ (DPA); Kāpo Māori Aotearoa; Muscular Dystrophy Association of New Zealand Inc.; and People First New Zealand Ngā Tāngata Tuatahi (Office for Disability Issues, 2019a). With a resourced mandate to progress Article 33.3 of the Convention, the Coalition set about developing a system for the disabled person-led monitoring of the UNCRPD in Aotearoa New Zealand. In line with the international human rights monitoring project for disabled people, it was decided by the Coalition that the DRPI research methodology would be implemented. Through this framework, between 2010 and 2017 the Coalition contracted the services of more than 50 disabled people to interview and consult with over 398 disabled New Zealanders on subjects relating to income security, support services, accessibility, employment, health,

92  Research handbook on disability policy participation and poverty, acceptance in society, media and more (Office for Disability Issues, 2019b). Then, following a brief period of review and evaluation by Malatest International (2017 to 2018), the DPO Coalition appointed the Donald Beasley Institute (DBI) to conduct the monitoring research on their behalf (Office for Disability Issues, 2019c). With over 36 years’ experience in inclusive research methods founded on the social and human rights models of disability, the DBI was well placed as an independent research institute to bring life to Article 33.3, while building the capacity of disabled human rights researchers. This set-up of monitoring led by disabled researchers and funded by the government has been recognised as best practice for monitoring disabled people’s human rights (Pinto, 2015). At the time of writing this chapter, the DBI has already carried out three cycles of disabled person-led monitoring on disabled people’s experience of the right to housing and the highest attainable standard of health (Donald Beasley Institute, 2020a, 2020b, 2022). In keeping with the principles of the DRPI methodology and Article 33.3, the monitoring team has included a disabled project lead, disabled coordinator, disabled monitors (researchers), disabled transcribers, disabled writers and editors, as well as disabled translators (for official languages and accessible formats). In alignment with one of the three components of the DRPI monitoring framework – individual violations – semi-structured qualitative interviews were the primary data collection method, before being analysed using a general inductive approach. This analytical method is suitable for the purpose of monitoring and reporting as it allows for findings to emerge from the data without interpretation or presumption (Thomas, 2006).

DISABLED PERSON-LED MONITORING (HEALTH AND WELLBEING) Having completed the first two monitoring cycles on disabled people’s right to housing in 2019 and 2020, the DPO Coalition decided that the third cycle on monitoring would investigate disabled people’s right to the highest attainable standard of health (Article 25). Health and wellbeing was selected as the key topic for two reasons. The first being that issues surrounding health and wellbeing had strongly emerged in the findings of both housing reports, and second, there was a lack of recent, peer-reviewed, disabled person-led data on disabled people’s experiences of the national health system in Aotearoa New Zealand. However, as with many research projects scheduled to take place in 2020, the best laid monitoring plans were thrown into disarray as the impact of COVID-19 began to be felt. In March 2020, Aotearoa New Zealand went into strict physical lockdown, meaning that the DRPI research method could not be delivered face-to-face, as it had been in previous cycles of monitoring, as it was no longer safe for disabled people to travel and meet – whether as monitors (researchers) or interviewees (participants). Recognising that it was more important than ever to monitor disabled people’s human rights, the rapidly evolving circumstances of the pandemic saw the entire monitoring research project move online. Conducting virtual focus groups and interviews had both benefits and challenges. For example, it enabled some interviewees who would not have participated otherwise to partake in the monitoring research. This was particularly true for interviewees who identified as living with psychosocial disabilities or who experienced social anxiety, with one interviewee articulating that she ‘would have not participated if it was not for the online

Disabled person-led monitoring of the UNCRPD  93 interview’. Another group of interviewees who benefited from virtual interviews were disabled people living rurally, as monitors did not need to travel to conduct interviews, increasing accessibility and inclusion of the scope of disabled people who could participate. On the other hand, virtual interviews undoubtedly limited the personal interactions that occur with face-to-face engagement. For example, one challenge that arose during data collection was understanding and interpreting body language and non-verbal cues, especially when interviewees were sharing personal and traumatic health and wellbeing experiences. Other groups of disabled people who were at a disadvantage were those who did not have access to technology or resources to participate in online interviews, and communities such as Māori and Pacifica whose cultural practices place importance on face-to-face interactions, rapport and collectivism. While efforts were made to respond to these challenges, further work continues to ensure harder-to-reach populations can actively contribute to monitoring in a full and meaningful way. While COVID-19 enforced specific methodological adjustments on us, it has also been important to adapt the DRPI methodology in other ways to respond to the unique context of Aotearoa New Zealand (for further discussion, see Francis Watene et al., 2021). For example, given that health and wellbeing is a broad and diverse subject affecting disabled people in different ways, the most ethical way to ensure the sub-themes of the monitoring research were relevant, current and driven by the disability community, was to begin by consulting with disabled people themselves. Therefore, Phase One involved consulting with 157 disabled people (134 disabled people and 23 family, whānau and close supporters) through an online survey and focus groups on what health and wellbeing violations they would like to see investigated. It was intended that the findings from Phase One were then used to inform the research framework of Phase Two. During Phase Two, we interviewed over 100 disabled people and their family, whānau and close supporters over a period of six months. Of these, 87 interviewees identified as disabled, and 13 as family, whānau or close supporters of people with multiple and complex disabilities. Sixty-eight interviewees identified as female, 28 as male, four as non-binary, and one as transmasculine. Ethnically, 77 interviewees identified as Pākehā, 13 as Māori, eight as Pacifica, seven as Asian, seven as European, four as South African, and one identified as South American. Interviewees were located throughout Aotearoa New Zealand, with the youngest interviewee being 20 years old, the oldest interviewee was 77 years old, with a median age of 45 years. The types of disabilities interviewees self-reported included physical disabilities; sensory disabilities (including, but not limited to, deafblind, blind, low vision, Deaf, deaf, and hard of hearing); people with learning disability and neurodiversity; and people with psychosocial disabilities. Many participants identified as living with multiple disabilities. Once the data had been collected by disabled monitors, transcribed by disabled transcribers, and coded according to predetermined and emergent themes, the findings were then allocated to relevant sub-articles under Article 25 (Health) of the UNCRPD. At the end of each sub-article the monitoring team summarised how the findings were indicative of the lack of progressive realisation of the obligations contained within the sub-article, followed by a list of duty-bearing agencies and organisations that should be concerned. Health and wellbeing findings that were relevant to other UNCRPD articles were also noted (Donald Beasley Institute, 2022).

94  Research handbook on disability policy National Health and Disability System Review Another key factor that influenced the monitoring research was the fortuitous review and reforms of Aotearoa New Zealand’s national health and disability system that occurred during the monitoring cycle. In 2018, the New Zealand Government announced that it was launching a review into its national health and disability system; a review that was ‘charged with recommending system-level changes that would be sustainable, lead to better and more equitable outcomes for all New Zealanders and shift the balance from treatment of illness towards health and wellbeing’ (Health and Disability System Review, 2020, p. 3). Within the review, disability was considered under two systems. First, were disabled people’s experiences under the national health system. Second, were disabled people’s experiences as users of Disability Support Services (DSS), which provide essential day-to-day support services for disabled people. The review occurred simultaneously with the health and wellbeing monitoring. However, as was quickly highlighted by the disability community, even though the review acknowledged the severely inequitable health outcomes of disabled New Zealanders, the expert panel leading the review and the process of the review itself had failed to engage directly with disabled people as experts of our own health and wellbeing. As stated by the National President of the New Zealand Disabled Persons Assembly, Gerri Pomeroy: The Health and Disability Review Final Report shows that this review was – as we feared – a health review with disability tacked on … This was a chance to completely overhaul the disability support system, in the same way that the report is suggesting overhauling the health system. Instead the urgent need to transform disability support is conspicuous in its absence. (Disabled Persons Assembly, 2020)

Following the public launch of the review findings in 2020, in April 2021 the New Zealand Minister of Health, Andrew Little, and Associate Minister of Health (Māori), Peeni Henare, announced major reforms to the health and disability system based on the review’s findings. In his announcement, Minister Little acknowledged that ‘if you’re disabled, we don’t even know what is happening with you because we don’t gather enough information’, before relegating issues relating to disabled people’s health and wellbeing experiences to announcements at a later date (New Zealand Government, 2021). In October 2021 the New Zealand Government then confirmed the establishment of a new Ministry for Disabled People, which would subsume the DSS arm of the former health system, thereby ensuring a clear difference between disability services and health services (Ministry of Social Development, n.d.). While the core purpose of Aotearoa New Zealand’s approach to Article 33.3 monitoring has been to identify circumstances where the New Zealand Government is not meeting its obligations under the UNCRPD, it was important to note that April 2021’s announcement of health and disability system reforms also presented a vision of a health and disability system that could potentially address at least some of the health system-related concerns raised by disabled people throughout the monitoring research. This new information required the DPO Coalition and monitoring team to pause and rethink how best to proceed with the findings of the monitoring. Given that the Government had broadly committed to addressing some of the violations in the reforms, presenting the findings of the monitoring research as had been originally intended felt like a misuse of time, effort and the expertise of disabled monitors and interviewees.

Disabled person-led monitoring of the UNCRPD  95 For this reason, it was important to think beyond the mandate of contributing data and evidence to international reporting efforts, and to also consider how the findings might impact and contribute to the current reforms and subsequent policy design. With both the health and disability system review and consequential reforms acknowledging the lack of data on disabled people’s experiences of the system, meetings with Ministry of Health representatives were quickly scheduled, with the monitoring findings re-framed to reflect whether the proposed reforms had the potential to address the rights violations reported by disabled people or not. While these discussions continue, what has been immediately clear is that the review and proposed reforms were not developed with the human rights model of disability in mind. As prolonged and frequent users of the national health and disability system will know, this oversight is one example of how attempts to harmonise national policy with the UNCRPD can be undermined. It also indicates that much more work is needed to understand the human rights model of disability as an oppositional device that can challenge technologies of government that marginalise, disadvantage and disempower disabled people (Lawson & Beckett, 2021). The review and reforms referred to in this chapter have actively moved away from the medical model of disability and embraced the ethos of the social model by recognising existing barriers within the current health and disability system. However, there is little evidence of a human rights-based approach being utilised to guide policy responses to disability rights violations (Lawson & Beckett, 2021). Further to this, the lack of early and intentional engagement with disabled people during the conduct of the review is a timely reminder of the New Zealand Government’s obligation to ‘closely consult with and actively involve persons with disabilities, including children with disabilities’ 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’, as outlined under Article 4.3 of the UNCRPD (United Nations, 2006).

BEYOND INTERNATIONAL REPORTING – MAXIMISING THE POTENTIAL OF CIVIL SOCIETY MONITORING The intent of our chapter has been to explore the role, method and audience of civil society monitoring. The brief case study presented here is just one example of the potential of Article 33.3 to identify rights violations for international human rights reporting processes and to play a direct role in holding governments accountable to their human rights obligations, while actively influencing the development of national policies. Upon reflection, the success of the health and wellbeing monitoring cycle was achieved through a combination of factors. For example, having a well-trained group of disabled monitors meant that the monitoring team was able to pivot, adapt and respond to both the pandemic and the evolving political context of the national health and disability system review. Second, it was important to ensure that the monitoring research was rigorous and scholarly, while remaining inclusive and accessible. Even though lay reports and grey literature provide context and anecdotal evidence, the potential of the monitoring findings has been significantly improved by ethical and peer-review processes, including approval by New Zealand’s national Health and Disability Ethics Committee (HDEC). To ensure that monitoring can achieve its maximum potential, it must not only engage with the disability community, but build the

96  Research handbook on disability policy capacity of disabled researchers who are both experts of their own lived experience, as well as in the field of human rights monitoring. Finally, by focusing on a monitoring topic that aligns with the key focus area of the current New Zealand Government, the findings of the monitoring research have been immediately useful in informing policy. While this was not the original intent of the chosen subject, it has proven invaluable in the path towards progressively realising Article 25 (Health) in Aotearoa New Zealand. Next Steps As we look to further strengthen civil society monitoring efforts in the years to come, three questions remain at the forefront of the monitoring team’s work. The first concerns the role of civil society in collecting, verifying and using acquired information to address human rights problems. As previously discussed, Article 33.3 is flexible in its wording, leaving scope for a variety of activities and pathways towards its realisation. While ambiguous in its articulation, the intent remains clear: disabled people must remain at the forefront of monitoring the progressive realisation of the UNCRPD. As we engage in conversations about how to maximise the potential of civil society monitoring to affect change and actively contribute to ensuring national policies align with the Convention, the sense in Aotearoa New Zealand is that monitoring needs to move beyond contributing evidence of human rights violations to international reporting cycles. Instead, the focus must expand to include evidence-based advocacy at a policy level led by disabled people with human rights expertise. The second question relates to the evolution of the DRPI methodology – as it is adapted to reflect Aotearoa’s unique political, social and environmental landscape, while also considering how research methodologies can lead to better human rights-informed change and transformation. For example, how can monitoring provide data, evidence and examples of best practice when governments are meeting their human rights obligations, rather than solely highlighting instances where they are falling short? There is a growing body of organisational change literature regarding a conscious shift away from the default deficit-oriented views of social change and human rights, towards a strengths-based approach to research, evaluation and organisational change (Suntinger and Birk, 2020). For example, appreciative inquiry (AI) is an emerging methodology based on the premise that society moves in whatever direction it collectively, passionately and persistently asks questions about (Bushe, 2011). When human rights violations become the focus of a monitoring investigation, there is potential for those problems to grow. On the other hand, when best practice and positive experiences become the focus, they too can begin to flourish (Ludema, Cooperrider & Barrett, 2001). With the next cycle of disabled person-led monitoring in Aotearoa New Zealand set to investigate disabled people’s right to supports and services under the new Whaikaha Ministry for Disabled People and the national rollout of Enabling Good Lives (2022–2024), evidence of best practice and the meaningful realisation of disability rights has the potential to lead to better human rights-informed changes both domestically and internationally. Therefore it is important for strength-based research methodologies to be considered alongside the DRPI methodology in future iterations of civil society monitoring. The third question we continue to debate is who are the intended audiences of the monitoring findings, and how should these findings be presented and disseminated? In our case, rather than the target audience being the UNCRPD Committee alone, we are now exploring ways to

Disabled person-led monitoring of the UNCRPD  97 ensure that the findings are relevant and accessible to all stakeholders, whether it be civil servants, government officials, policy makers, the disability sector or the general public. In doing so, we hope to support a steady move towards a consistently human rights-based approach to policy design and implementation in Aotearoa New Zealand.

CONCLUSION This chapter has explored the origins of civil society monitoring according to the United Nations Convention on the Rights of Persons with Disabilities. Using Aotearoa New Zealand’s efforts to bring life to Article 33.3 of the UNCRPD, the case has been made for disabled person-led monitoring to move beyond simply monitoring disability rights violations, to utilising the rights model of disability to influence national policy design and development. Indeed, as an ‘unprecedented’ norm, Article 33.3 undoubtedly provides the pathway forward for exposing and maximising the potential and expertise of disabled people to lead the progressive realisation of the UNCRPD, and human rights monitoring in general, within our countries and beyond.

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Disabled person-led monitoring of the UNCRPD  99 Office of the High Commissioner for Human Rights. (1993). Principles relating to the Status of National Institutions (The Paris Principles). United Nations. https://www.ohchr.org/en/professionalinterest/ ​ ​ ​ ​ ​ ​ ​ ​ pages/statusofnationalinstitutions.aspx ​ ​ ​ ​ Office of the High Commissioner for Human Rights. (2001). Training manual on human rights monitoring: Professional training series No. 7. United Nations. https://www.ohchr.org/Documents/ ​ ​ ​ ​ ​ Publications/training7Introen.pdf ​ ​ Office of the High Commissioner for Human Rights. (2009). Thematic study by the Office of the United Nations High Commissioner for Human Rights on the structure and role of national mechanisms for the implementation and monitoring of the Convention on the Rights of Persons with Disabilities. United Nations. https://digitallibrary.un.org/record/680177?ln=e ​ ​ ​ ​ ​ ​ ​ ​ Oliver, M. (2013). The social model of disability: Thirty years on. Disability & Society, 28(7), 1024–1026. https://doi.org/10.1080/09687599.2013.818773 ​ ​ ​ ​ ​ ​ ​ Perlin, M. L. (2012). Promoting social change in Asia and the Pacific: The need for a disability rights tribunal to give life to the U.N. Convention on the Rights of Persons with Disabilities. The George Washington International Law Review, 44(1), 1–38. Perlin, M. L. (2014). ‘The ladder of the law has no top and no bottom’: How therapeutic jurisprudence can give life to international human rights. International Journal of Law and Psychiatry, 37(6), 535–542. Pinto, P.C. (2015). Conclusion: Debating disability rights monitoring: Strength, weakness, and the challenges ahead. In H. M. Rioux, C. P. Pinto, & G. Parekh (Eds.), Disability, rights monitoring, and social change (pp. 277–285). Canadian Scholars’ Press Inc. Quinn, G. (2009). Resisting the ‘temptation of elegance’: Can the Convention on The Rights of Persons with Disabilities socialise States to right behaviour? In O. M. Arnardóttir & G. Quinn (Eds.), The UN Convention on the Rights of Persons with Disabilities: European and Scandinavian perspectives (pp. 215–277). Martinus Nijhoff Publishers. Retief, M., & Letšosa, R. (2018). Models of disability: A brief overview. HTS Teologiese Studies/ Theological Studies, 74(1), 1–8. https://doi.org/10.4102/hts.v74i1.4738 ​ ​ ​ ​ ​ ​ ​ Smart, J. F. (2009). The power of models of disability. Journal of Rehabilitation, 75(2), 3–11. Suntinger, W., & Birk, M. (2020). Appreciative inquiry: Mobilising potentials within police organizations to realize human rights. http://www.humanrightsconsulting.com/docs/Suntinger%20Birk ​ ​ ​ ​ ​ ​ ​ ​ ​ %20Appreciative%20Inquiry%20-Mobilising%20potentials%20within%20police%20organizations ​ ​ ​ ​ ​ ​ ​ ​ %20to%20realize%20human%20rights.pdf ​ ​ ​ ​ Thomas, D. R. (2006). A general inductive approach for analyzing qualitative evaluation data. American Journal of Evaluation, 27(2), 237–246. https://doi.org/10.1177/1098214005283748 ​ ​ ​ ​ ​ United Nations. (1948). Universal Declaration of Human Rights. https://www.un.org/en/about-us/ ​ ​ ​ ​ ​ ​ ​ universal-declaration-of-human-rights ​ ​ ​ ​ United Nations. (2006). Convention on the Rights of Persons with Disabilities: Articles. https://www.un ​ ​ ​ .org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/convention ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -on-the-rights-of-persons-with-disabilities-2.html. ​ ​ ​ ​ ​ ​ ​ ​ United Nations Department of Economic and Social Affairs, Office of the High Commissioner for Human Rights, & Inter-Parliamentary Union. (2007). From exclusion to equality: Realizing the rights of persons with disabilities: Handbook for parliamentarians on the Convention of the Rights of Persons with Disabilities and its Optional Protocol (No. 14). United Nations. https://www.un.org/ ​ ​ ​ ​ disabilities/documents/toolaction/ipuhb.pdf ​ ​ ​ ​

8. Narrative 3: If my childhood can have CRPD’s company Honglu Zhu

I am a highly myopic girl from the southern mountainous area. The thick lens is the shadow in my life. In school, I encountered a great deal of trouble in learning. Even when I was wearing glasses I still could not see the blackboard. What made me more aggrieved was that everyone thought that my poor learning was my personal problem. I was sad to be different from others. My vision impairment caused me to sink deep into depression and feel inferior and ashamed. While others lived happily on campus, I was lonely and the students in my class despised me as a freak. The students constantly bullied and laughed at me, and when I suffered from campus bullying, the teacher’s inaction also left me helpless and with a cold heart. Now I recall the dark days when I was in school, and I can’t remember how I supported myself in those days. Maybe I vaguely understood at that time that hard work does not necessarily lead to opportunities, and if I don’t work hard, there will be no opportunities. It turns out that my persistence was right. Even if my physical appearance and character were ridiculed, I took a good cultural foundation forward, and now I have entered work, and in the economy I can also be independent. However, it turns out that prejudice and people’s misunderstanding of my vision condition because of visual impairment did not disappear when I left school. I remember once I was traveling alone in the train station and couldn’t find the location of the bathroom. I had to ask a cleaner in the station. They were rude and impatient, telling me to read the sign and, when I asked them to say the directions, exclaimed ‘I said there, don’t you see yourself?!’ At that time, I felt very angry, but also felt very helpless, suddenly stunned, and did not know what to do. This is just one of many similar sad experiences. In the past, when I had difficulty because of vision obstacles, I always touched the wall when I helped others, and I have had to go to others for help. I feel very anxious I will always think that if there is no vision barrier, will my life not be better? When I was a guest at the home of a disabled friend, I happened to see a magazine about the disabled community on his sofa and flipped through it. From that magazine, I came into contact with the United Nations Convention on the Rights of Persons with Disabilities (CRPD) for the first time. Although the language of the Convention is a bit difficult to understand, I have been diligently learning, because I especially agree with the concept of respecting differences which I see in the Convention on the Rights of People with Disabilities. I often think that if I can have the CRPD’s companionship, if my vision barriers can be seen as a difference rather than a problem, then I may be more calm and accept my life. Maybe if more people know about the CRPD, they will try to understand my vision, and be willing to support me. 100

Narrative 3: If my childhood can have CRPD’s company  101 In May 2019, I had a very valuable opportunity to go to a UNESCO media communication and equality of disability workshop. In this way, I had a chance to learn more about the CRPD. In that workshop, the tutor gave us a stack of items, and asked us to fit these items into a shoe box in a specified time. One of the items was a biscuit, and our group did not hesitate to break the biscuit in order to fit it into the box. However, later I suddenly realized that we had ignored a lot of things when we finished the task. We all thought that the biscuits needed to be broken to fit the box, but we did not consider that the box is also problematic. It does not provide a suitable living environment for the biscuit. At the end of the workshop, I realized that each of us is different, we all have some individual needs that need to be respected, and we should not suffer prejudice and discrimination from society because of these differences. Since that time, I have been biting my teeth, because I know that many things can only rely on themselves, and don’t work well alone. When I meet the Convention on the Rights of Persons with Disabilities, I will slowly try to seek appropriate support, and try to help others to understand their rights. How I hope that one day more and more people will regard disability as a difference. At that time, other people will not suffer as hard as I did when I was a child. They will be able to move forward more confidently and have the courage to live their own unique life.

9. The right of people with disabilities to participate in cultural life: is Cinderella going to the ball? Delia Ferri and Ann Leahy

INTRODUCTION The right to participate in cultural life is deeply rooted in international human rights law, albeit being described as the ‘Cinderella of human rights’ because of it being neglected and lacking enforceability (Xanthaki, 2015). Article 27 of the Universal Declaration of Human Rights (UDHR) states that ‘everyone 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’. Article 15(1)(a) of the International Covenant on Economic, Social and Cultural Rights (ICESCR) recognizes ‘the right of everyone to take part in cultural life’ (O’Keefe, 1998, p. 904). Other international provisions guarantee, to various extents, the right to cultural participation (Stamatopolou, 2007), and articulate collective rights of minorities and indigenous peoples (Kymlicka, 2008). The content of the right to participate in cultural life ‘remains contested’ (Bantekas et al., 2018, p. 865), but it is generally considered as encompassing a twofold individual dimension and a collective aspect (European Parliament Research Service (EPRS), 2017). The twofold individual dimension entails the right to access cultural activities, goods, and services (Romainville, 2015), and the right to active involvement in culture, including engagement in the creation of cultural products. The collective aspect refers to cultural communities being recognized and enabled to enjoy their cultural expressions. Article 27 UDHR and Article 15 ICESCR do apply to persons with disabilities1 without discrimination, but they failed to address their specific needs. This gap has been filled by Article 30 of the UN Convention on the Rights of Persons with Disabilities (CRPD), which articulates the right of persons with disabilities to participate in cultural life, sport, leisure, and recreation. This provision has the merit of shedding light on the need for appropriate policies that enhance cultural participation of people with disabilities. However, it is one of the least studied CRPD provisions. While there are some legal commentaries on Article 30 CRPD (Bantekas et al., 2018; Manca, 2017), little scholarship addresses cultural participation (Tatic, 2015), compared to other areas covered in Article 30 (i.e. sports and tourism). With a view to filling a gap in the literature, this chapter argues that Article 30 plays a pivotal role in the realization of the human rights model of disability embedded in the CRPD by emphasizing the inherent dignity accorded to people through participation in cultural life (Degener, 2016). It critically discusses the implementation of this provision across several sample countries. While acknowledging the broad scholarly understanding of culture (Williams, 1981) which underpins human rights law, as the ‘set of distinctive spiritual, material, intellectual and emotional features of society or a social group’ (UNESCO, 2001, para. 5 of the preamble), this chapter focuses on arts practices and heritage (Caust, 2019). After 102

The right of people with disabilities to participate in cultural life  103 this introduction, the second section outlines the methodology, while the third discusses the right to participate in cultural life and embeds it in the human rights model of disability. The chapter goes on to analyze emerging trends, challenges, and gaps in the way States Parties to the CRPD approach the implementation of Article 30 CRPD, before providing concluding remarks.

METHODOLOGY This chapter presents a cross-country analysis of the implementation of Article 30 based on an examination of reports of States Parties to the CRPD, as well as Lists of Issues (LIs) and Concluding Observations (COs) made in respect of those reports by the UN Committee on the Rights of Persons with Disabilities (hereafter cited the CRPD Committee). The qualitative document analysis (Bowen, 2009) identified common themes, divergences, and trends related to the legal obligations laid out in this provision. Furthermore, we interpreted those themes, divergences, and trends through the lens of the human rights model of disability. The chapter adopts a socio-legal approach and is informed by the study of the relevant legal and disability studies literature. The 36 countries selected include 25 Member States of the EU that, at the time of writing this chapter, have filed reports with the CRPD Committee,2 and Argentina, Australia, Azerbaijan, Brazil, Canada, India, Mexico, the Philippines, South Africa, Tunisia, and the United Kingdom (UK) (Table 9.1). While the analysis of EU Member States and the UK is part of a larger pan-European research project,3 the selection of other non-EU countries is premised on the idea of maintaining a geographical balance and including countries that are part of the ‘Global South’ (Grech & Soldatic, 2016). Such a selection is based on two criteria. First, we considered States Parties that ratified the CRPD at least ten years ago, in order to be able to evaluate trends in the implementation of Article 30 across a relatively long time span, and to access cycles of all documents related to the reporting process under the CRPD. Second, we selected States with different legal systems (e.g. federal systems such as India and Australia, as well as unitary states such as Tunisia) and diverse legal traditions, as well as States that present different economic contexts (Mitra et al., 2013). This choice supports the goal of considering to what extent there are common trends in the way Article 30 is implemented that are independent of constitutional guarantees with respect to disability (World Policy Analysis Center, 2021), and of legal and contextual differences. We reviewed the initial reports of all the countries selected, and the combined second and third reports of 14 countries which were available up until May 2021 (Argentina, Australia, Austria, Azerbaijan, Belgium, Denmark, Germany, Hungary, Lithuania, Mexico, Slovakia, Spain, Sweden, and Tunisia). There were COs filed for 33 countries, and COs on combined second/third reports for two State Parties (Australia and Spain). The CRPD reports cited in the chapter were accessed at the CRPD Committee’s website,4 through multiple searches conducted between October 2020 and May 2021.

104  Research handbook on disability policy Table 9.1

CRPD reports reviewed

EU Countries (those that have submitted reports to the CRPD Committee) Austria 1. Belgium 2. Bulgaria 3. Croatia 4. Cyprus 5. Czechia 6. Denmark 7. Estonia 8. Finland 9. France 10. Germany 11. Greece 12. Hungary 13. Italy 14. Latvia 15. Lithuania 16. Luxembourg 17. Malta 18. Netherlands 19. Poland 20. Portugal 21. Slovakia 22. Slovenia 23. Spain 24. Sweden 25. Sub-total (EU) Selected Non-EU Countries Argentina 26. Australia 27. Azerbaijan 28. Brazil 29. Canada 30. India 31. Mexico 32. Philippines 33. South Africa 34. Tunisia 35. UK 36. Sub-total (Non-EU) Total

Reports of State Parties

2 2 1 1 1 1 2 1 1 1 2 1 2 1 1 2 1 1 1 1 1 2 1 2 2 34

2 2 2 1 1 1 2 1 1 2 1 16 50

List of Issues Concluding (LIs)a Observations (COs)b 2 1 2 1 1 1 2 1 1 1 2 1 2 1 1 1 0 0 1 0 2 1 1 1 2 1 1 1 1 1 1 1 1 1 1 1 0 0 1 1 1 1 2 1 1 1 2 2 2 1 33 23 1 2 2 1 2 1 2 1 1 2 1 16 49

1 2 1 1 1 1 1 1 1 1 1 12 35

Notes: a With the LIs, the CRPD Committee seeks further information from States Parties and highlights specific gaps in State Parties’ reports. b With its COs, the CRPD Committee formulates concerns and provides general recommendations on State Parties’ reports.

The right of people with disabilities to participate in cultural life  105

THE RIGHT TO PARTICIPATE IN CULTURAL LIFE AND ITS ESSENTIAL ROLE IN REALIZING THE HUMAN RIGHTS MODEL OF DISABILITY The first subsection will outline the core tenets of Article 30, while the second subsection will highlight the role of this provision in realizing the human rights model of disability and in affirming the inherent dignity of persons with disabilities. The Right to Participate in Cultural Life in Article 30 CRPD Article 30 CRPD provides inter alia for the right to participate in cultural life, which is the focus of this chapter,5 and articulates a range of obligations that are detailed in their normative content. Article 30(1) protects and promotes the right of persons with disabilities to participate in cultural life, in its twofold individual dimensions. As noted by Bantekas et al. (2018, p. 876) ‘[t]he 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.’ It requires States Parties to take all appropriate measures to ensure that people with disabilities have access to cultural materials, television programs, films, theater, and other cultural activities, as well as to places where cultural performances are held, and to monuments and sites. This provision, echoing Article 9 CRPD, recognizes that accessibility is a precondition to ensuring cultural participation, as highlighted by the CRPD Committee in its General Comment No. 2 (CRPD Committee, 2014). It must be read in conjunction with Article 21 CRPD, which requires States Parties to provide information in accessible formats, to recognize and promote the use of sign languages, as well as to facilitate communication in Braille. Article 30(2) obliges States Parties to take appropriate measures to enable persons with disabilities to develop their creative, artistic, and intellectual potential. This encompasses the obligation to set up ‘specialized forms of training’ (Bantekas et al., 2018, p. 886). Furthermore, Article 30(3) requires States to ensure that laws protecting intellectual property rights do not constitute an unreasonable or discriminatory barrier to the access of people with disabilities to cultural materials. The latter obligation relates primarily to copyright, which may constitute a barrier preventing cultural materials in accessible formats from being made available to people with disabilities (Sganga, 2015). In that regard, the CRPD is complemented by another international treaty aimed at ensuring access to printed materials for people with disabilities – the Marrakesh Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired, or Otherwise Print Disabled (Marrakesh Treaty), adopted by the World Intellectual Property Organization in 2013. Article 30(4) provides for the recognition and support of the specific cultural and linguistic identity of people with disabilities, including sign languages and Deaf culture. It complements Article 21(e) CRPD, which, as noted above, requires States Parties to take measures ‘recognizing and promoting the use of sign languages’, and Article 24 CRPD addressing the linguistic identity of Deaf persons in the context of education (Murray et al., 2018). In particular, Article 24 provides for education to be inclusive and States Parties ‘are mandated to “facilitate and promote the linguistic identity” of [D]eaf persons on an equal basis, whereas Article 30(4) provides an individual entitlement to “recognition and support”’ (Bantekas et al.,

106  Research handbook on disability policy 2018, p. 909; emphasis added). Article 30(4) does not explicitly conceptualize Deaf people as a linguistic minority, even though it acknowledges the existence of Deaf culture. Ball (2011, p. 785) argues that ‘an essential feature of the CRPD’s model is the emphasis on balancing the preservation of the Deaf individual’s linguistic identity while achieving accessibility to public services for sign language’. Article 30(4) CRPD mandates State Parties to recognize the individual identity of Deaf persons, and leaves the door open to the recognition of Deaf communities as cultural minorities, but does not impose it. Notably, Article 30(4) does not use the terms ‘disability culture’ or ‘disability identity’ as ‘these terms remain controversial, including among the members of the disability community’ (Bantekas et al., 2018, p. 899; Johnson, 2020), but refers to cultural identity, which encompasses the manifold layers of a disabled individual’s identity. The Role of Article 30 CRPD in the Realization of the Human Rights Model of Disability The CRPD is said to encompass a social-contextual understanding of disability (Broderick, 2015), in which disability is understood as an interactive process between people with impairments and societal barriers, and, as such, is considered to be a more refined elaboration of the ‘pure’ social model (Ferri & Broderick, 2019). Furthermore, it is considered to embed the human rights model of disability (Degener, 2017; Lawson & Beckett, 2021), or to endorse a human rights approach to disability (Skarstad & Stein, 2018). Without engaging in a discussion of the various models of disability (Mitra, 2006), we limit ourselves to recalling some of the core tenets of the human rights model, by referring to one of its most authoritative proponents, Teresia Degener (2016, 2017), and to the CRPD Committee (2018a). Degener argues that this model does not focus purely on social and environmental barriers, but emphasizes the inherent human dignity of persons with disabilities, and ‘encompasses both sets of human rights, civil and political as well as economic, social and cultural rights’ (Degener, 2017, p. 44). She suggests that the human rights model values impairments as part of human diversity, pays attention to intersectional discrimination (Degener, 2017, pp. 47, 49), offering ‘room for minority and cultural identification’ (Degener, 2016, p. 9). Consistent with this, the CRPD Committee in its General Comment No. 6 (2018a) acknowledges that disability is a social construct, and conceives of it as ‘one of several layers of identity’. The recognition of the inherent dignity of people with disabilities is pivotal in the elaboration of the concept of inclusive equality embodied in the human rights model. Inclusive equality, as articulated by the CRPD Committee (2018a), embraces four intertwined dimensions: a fair redistributive dimension, which refers to the need to address socioeconomic disadvantages; a recognition dimension, which requires stigma to be combatted and respect for dignity and intersectionality; a participative dimension, which necessitates appreciation of the social nature of people with disabilities as members of society; and an accommodating dimension, which entails making space for difference as a matter of human dignity (CRPD Committee, 2018a). The latter dimension is underpinned by the idea of the diversity of individuals with disabilities from one another. It also refers to reasonable accommodation, which is any ‘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’ (Article 2 CRPD). This fourth dimension may also be linked with accessibility as

The right of people with disabilities to participate in cultural life  107 a precondition for the effective implementation and the full enjoyment of all the rights set out in the CRPD. The CRPD Committee and Degener do not directly articulate the right to participate in cultural life when elaborating on the human rights model of disability. Nonetheless, we argue that this right is encompassed by, and essential for the realization of, such a model in three respects. First, culture is the expression of human nature. Hence, the recognition of the right to access cultural activities on an equal basis is linked to respect for the inherent dignity of persons with disabilities. The freedom of creative activity implies the expression of everyone’s ‘layered’ identity. Second, and from a different yet interconnected perspective, cultural representations of disability have historically been negative (Shakespeare, 1994, 2014). Thus, the contribution of artists with disabilities is indispensable to the recognition of the inherent dignity of all disabled people. Smith and Stein (2020, p. 286) recall that, ‘[i]f fully harnessed, Article 30(2) CRPD (2006) will afford powerful opportunities for persons with intellectual disability to “[c]onfront the passivity that paternalistic and non-participatory models of disability typically evoke”’. Jakubowicz and Meekosha (2003, p. 190) suggest that disability culture seeks to revalorize disability experiences and affirms ‘different embodiments through literature, drama, sport and music’. Literature on artistic participation by people with disabilities stresses how this can lead to the articulation of identities and experiences that are otherwise overlooked (Saur & Johansen, 2013; Taylor, 2005). Relatedly, we contend that cultural participation is indispensable to combatting stigma and realizing the recognition dimension of inclusive equality. Third, enjoying culture is a vital part of being a member of society, and it is indispensable to achieving the participative dimension of inclusive equality. As noted by Smith and Stein (2020, p. 287), ‘Article 30’s implementation plays a vital role in furthering the CRPD’s transformative vision of persons with disabilities’ full-fledged membership in an inclusive society.’ This, however, can be actualized only when accessibility of culture is ensured and when the diversity of persons with disabilities is accommodated. We will not delve into a discussion of whether the human rights model of disability represents a development of the social model (Degener, 2017), or whether the two are complementary (Lawson & Beckett, 2021). We, however, embrace the view that the human rights model has a prescriptive nature, and ‘sets out standards of behaviour expected of States and institutions to ensure basic social justice for disabled people’ (Lawson & Beckett, 2021, p. 368). Thus, it is an apt tool to assess disability policies in the cultural field.

EMERGING TRENDS, CHALLENGES AND GAPS IN THE IMPLEMENTATION OF ARTICLE 30 CRPD In our analysis of States Parties’ reports, we identified divergences, general convergent trends, and efforts at realizing the human rights model of disability in relation to the implementation of Article 30 CRPD. Divergences and General Trends States Parties’ reports of the sample countries reviewed deal with Article 30 in different ways, and vary in the degree of attention that they give to it. Some State Parties, such as Argentina (CRPD/C/ARG/1), focus mostly on participation in sports, while other countries, such as

108  Research handbook on disability policy Australia, Bulgaria, Brazil, and South Africa, discuss the implementation of Article 30 quite broadly (CRPD/C/AUS/1; CRPD/C/BGR/1; CRPD/C/BRA/1; CRPD/C/ZAF/1). The degree of thoroughness in dealing with this provision does not appear to be linked to a particular legal system or tradition. Furthermore, a lengthy response is not necessarily representative of a thoroughgoing, systematic approach to addressing cultural participation. Among the countries considered, the Australian report was notable in its reference to a comprehensive cultural policy plan related to people with disabilities. The National Arts and Disability Strategy ‘focuses on access and participation of persons with disabilities, barriers which prevent emerging and professional artists and arts workers with disabilities from realising their ambitions, and audience development’ (CRPD/C/AUS/1, para. 186; see also the ‘Action Plan’ referenced in the initial Danish report, CRPD/C/DNK/1, para. 334). In general, while some States Parties’ reports refer to strategies within particular sectors or to digitization strategies,6 under Article 30 they could outline in more detail to what extent cultural participation is addressed in them and in national disability strategies. However, some of the countries considered include culture as a priority field of action in their overall domestic disability strategy. For example, the Bulgarian National Strategy for Equal Opportunities for Disabled People 2008–2015 and the subsequent National Strategy 2016–2020 included among its specific objectives that of providing equal opportunities for sports, recreation, tourism, and participation in cultural life (Bulgarian Government, 2008, 2016). Several reports tend to list single initiatives that possibly entail good practices, but do not provide strong evidence of a systematic approach to the implementation of Article 30 and seem to signal the lack of a comprehensive policy approach. For instance, there are quite a few initiatives referred to in the initial reports of India (CRPD/C/IND/1) and of Croatia (CRPD/C/ HRV/1). The degree to which these initiatives might represent a strategic approach to meet the obligation provided in Article 30 remains unclear, and, in fact, in the case of those two countries, subsequent COs from the CRPD Committee express concern about levels of participation in cultural life (CRPD/C/IND/CO/1, paras 62–63; CRPD/C/HRV/CO/1, paras 47–48). Given that Article 30(3) explicitly obliges States Parties to ‘take all appropriate 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’, the majority of the States Parties’ reports reviewed included a reference to copyright laws and/or to ratification of the Marrakesh Treaty. Correspondingly, a focus on copyright issues is a feature of several LIs and COs. Thus, where a recommendation under Article 30 is made in the COs, it frequently concerns ratifying or implementing the Marrakesh Treaty. This trend had been already observed by Bantekas et al. (2018). Overall, States Parties’ reports did engage with the right to participate in cultural life somewhat signaling that this right is no longer a ‘Cinderella’, and is engaged with by certain countries in some detail. In some instances, where a second/third report is available, it is possible to note a developing engagement with Article 30 CRPD in the subsequent report. For example, the second/third report from Mexico (CRPD/C/MEX/2–3) deals with Article 30 at length. It lists a series of examples of arts/culture events – such as accessible films, an adapted dance program, an accessibility program at museums in Mexico City, and a program (SensibilizArte) ‘which promotes artistic development and coordinates guided tours and workshops for persons with disabilities’ (para. 285).

The right of people with disabilities to participate in cultural life  109 A Slow Move towards Meaningful Participation in Culture and Recognition of Inherent Dignity The analysis of the reports shows that States Parties to the CRPD may be starting to view cultural participation as a facilitator of self-expression for people with disabilities, underpinning an affirmation of their dignity. For example, the Latvian report (CRPD/C/LVA/1, para. 370) mentions various opportunities for Deaf people, citing ‘a variety of creative self-expression measures’. The Lithuanian report refers to ‘artistic ability development classes’ (CRPD/C/ LTU/1, para. 305) and the Brazilian report indicates cultural activities aimed at the ‘development of skills for the expression of creativity and perception’ (CRPD/C/BRA/1, para. 247). The Slovakian report mentions the availability of ‘active and passive culture’ (CRPD/C/ SVK/1, para. 390); likewise, the second/third report of Tunisia refers to people with disabilities benefitting from cultural activities ‘as both recipients and participants’ (CRPD/C/ TUN/2–3, para. 204). States Parties’ reports show less awareness of people with disabilities as professional creators of culture in their own right. Nonetheless, some of them are explicit about professional participation or refer to arts organizations that include disabled and non-disabled artists side-by-side. For example, the initial report from Australia mentions the need to address barriers faced by professional artists and arts workers. It also references programs that support the production of art by disabled people (CRPD/C/AUS/1, paras 186–188). The initial report from Sweden recognizes both ‘personal creation’ and contributing to ‘professional artistic creation’ (CRPD/C/SWE/1, para. 282). That report also states that professional theater and dance groups may increasingly ‘include actors and dancers both with and without disabilities’ (para. 289). The initial report of South Africa mentions the Performing Arts Policy requiring that 5 percent of performers ‘contracted for celebration and/or commemoration of national days should be disabled’ (CRPD/C/ZAF/1, para. 354). While disability arts are no longer seen as needing to engage exclusively with disability issues (Solvang, 2012) or to be about educating others, in some States Parties’ reports, cultural participation of persons with disabilities is linked to the idea of combatting stigma. For example, the initial report from Croatia includes a reference to support both for people with disabilities who are artists and to events that seem to aim at educating others. It mentions financial support for projects ‘…that sensitise the public for artistic work of persons with disabilities and specific theatres of persons with disabilities’ (CRPD/C/HRV/1, para. 217). The initial report from India (CRPD/C/IND/1, para. 263) states (albeit using outdated language) that, in order ‘to safeguard and recognize the interests of the person with disabilities’, the Central Board of Film Certification uses a set of guidelines, one of which ‘mandates that while granting certificates to films, the Board must ensure that scenes showing abuse or ridicule of physically and mentally “handicapped” persons are not presented needlessly’. Accessibility of Cultural Goods and Services and Awareness of Accommodating Human Diversity Accessibility of cultural knowledge depends on the complex interplay between a specific person’s individual characteristics and the environment (Mastrogiuseppe et al., 2020). States’ reports often focus not just on physical accessibility, but also on the accessibility of content of arts, cultural, and heritage products designed to be inclusive. Many reports refer

110  Research handbook on disability policy to an array of sectoral legislation, policies, funding tools, and specific initiatives designed to make cultural products like films, audio-visual products, theaters, exhibitions, or content of libraries, museums, or heritage sites accessible. In the case of cultural venues, the report from Czechia states that museums progressively ‘make all expositions and exhibitions accessible’ (CRPD/C/CZE/1, para. 449). That report also instances a venue with a tactile exposition, the digitalization of content, and a festival where Deaf people are said to constitute over half of the participants (CRPD/C/CZE/1, paras 456–460). Other examples are seen in the initial report of Australia, which refers to the NSW Government’s cultural institutions incorporating multi-sensory and tactile features into exhibition design, the provision of sensory tours, interpreted tours in Auslan, and Braille guides (CRPD/C/AUS/1, para. 187). The Estonian report mentions theaters using text strips and sign language interpretation, loop systems, subtitling of films, and inclusivity of cultural sites, museums, and galleries (CRPD/C/EST/1, paras 220–228; see also the Latvian report, CRPD/C/LVA/1, paras 365–370). Some reports refer to libraries specifically for blind and visually impaired people. For example, the Danish report mentions a state-owned library producing audio books, e-books, and Braille for visually impaired and dyslexic people (CRPD/C/DNK/1, para. 337; see also the initial report of South Africa, CRPD/C/ZAF/1, para. 355). Less common are references to Sign Language libraries, but the Finnish report mentions one (CRPD/C/FIN/1, para. 444) and the second/third report from Mexico refers to a ‘Mexican Sign Language room’ at one library which, inter alia, ‘offers reading in sign language’ (CRPD/C/MEX/2–3, para. 287). Also unusual were references to visual arts being made accessible for visually impaired people. However, the report from Estonia mentions improvements to the accessibility of the Art Museum of Estonia for mobility, visual, hearing, and intellectually disabled people (CRPD/C/ EST/1, para. 224). Film is another area of focus in some reports. For example, the initial German report highlights that the Film Promotion Act supports audio-description for visually impaired persons and subtitling for persons with hearing disability and provides incentives ‘for the creation of barrier-free versions of cinema films’ (CRPD/C/DEU/1, para. 262). The initial report from Australia refers to support for commercial cinema for audio-description and captioning technology to improve access for people who are Deaf or blind (CRPD/C/AUS/1, para. 187). In most cases, it is difficult to grasp from States’ reports how effective those legislative measures or policies are in practice, but there is certainly a growing awareness of the need to take the diversity of people with disabilities into account. An explicit aspect of recognizing and accommodating diversity is the protection of sign language afforded by Article 30(4). Though this was not universal across the reports reviewed, many countries refer to measures taken, or planned, towards the recognition of sign language as an official language, or of sign language users and Deaf people as a linguistic or cultural minority (among others, reports of Argentina, CRPD/C/ARG/1, para. 279; Azerbaijan, CRPD/C/AZE/2–3, para. 37; Belgium, CRPD/C/BEL/1, para. 97; Croatia, CRPD/C/HRV/1, para. 17; Finland, CRPD/C/FIN/1, para. 259; Hungary, CRPD/C/HUN/1, para. 17; Lithuania, CRPD/C/LVA/1, para. 158). The Finnish report represents an interesting case in its level of detail, referring to sign language users as a ‘language and cultural minority’ and to different groups of sign language users (CRPD/C/FIN/1, paras 257–261). Interestingly, however, several reports to the CRPD Committee deal with sign language most extensively under the implementation of Article 21, rather than under Article 30. In this regard, sign language seems to be conceived of more as an accessibility measure, without a full awareness of Deaf culture.

The right of people with disabilities to participate in cultural life  111 Existing Gaps and Remaining Challenges While, as mentioned above, some reports seem to acknowledge the dignity of people with disabilities, there are still traces of medical approaches. For example, the Polish report refers to ‘library therapy and art therapy’ for blind people (CRPD/C/POL/1, para. 514), while the combined second/third report from Lithuania mentions NGOs offering ‘social rehabilitation services’ that involve ‘self-expression and cultural activities’ (CRPD/C/LTU/2–3, para. 248). Likewise, the report from Czechia includes reference to ‘art-therapy’ and support for projects that exploit the ‘therapeutic function of culture in order to compensate for disadvantages on account of health’ (CRPD/C/CZE/1, para. 452). In a somewhat ambiguous section, the report from the Philippines mentions ‘cultural care giving services for persons with disabilities’ (CRPD/C/PHL/1, para. 259). Other reports refer to (or imply) lack of health, or inability. For example, the initial report from Azerbaijan mentions activities aimed at the ‘integration of persons with disabilities and children with impaired health to the society’, which aim to ‘equalize them with healthy persons and to reveal their talents and abilities…’ (CRPD/C/ AZE/1, para. 311). The Estonian report mentions public libraries organizing home deliveries for people unable ‘to visit the library due to health reasons’ (CRPD/C/EST/1, para. 230). Thus, while the initiatives themselves may add value to the lives of the people involved, we contend that accessibility or inclusion measures seem to be understood as necessary because of the medical conditions of individuals, not in terms of the human rights approach to disability enshrined in the CRPD. Sometimes, States’ reports refer to cultural activities in terms of education about disability issues amongst the general public or people working in cultural sectors, as already mentioned. Awareness-raising initiatives may be valuable, but some of these references suggest that disability is still constituted as an individual problem requiring a charitable response. For example, Hungary’s initial report mentions support for people with disabilities regarding ‘public education programmes’ and public education conferences are described as opportunities for people with disabilities ‘to report their own problems’ (CRPD/C/HUN/1, para. 236). The CRPD Committee sometimes highlights the issue of medicalization, identifying, for example, in COs for the Philippines (CRPD/C/PHL/CO/1, para. 6), the ‘prevalence of the medical and charity approaches in the State party’s legislation and policies … overemphasizing impairment, medical treatment and social care’. The growing awareness about accessibility shown in States’ reports tallies with a range of good practices on access to cultural goods and services highlighted by gray literature (Arts & Disability Ireland, 2010) and scholarship (Arenghi et al., 2016). However, this is counterbalanced by the bittersweet picture emerging from shadow reports submitted to the CRPD Committee, which, where they deal with culture, detail the inadequate accessibility of cultural offerings or lack of recognition in practice of Deaf culture. An example comes from the report submitted by the coalition of civil society organizations in Denmark (Disabled People’s Organisations Denmark, 2019, p. 48). This suggests that many cultural institutions, such as theaters, museums, and cinemas, are not accessible either in terms of the physical accessibility of buildings or digital accessibility of apps, websites, or content. Furthermore, sometimes States’ reports themselves refer to the views of civil society organizations that the measures taken are inadequate (see initial Austrian report, CRPD/C/AUT/1, para. 340). States’ reports provide limited information about the rates of cultural participation of persons with disabilities. Exceptions in this respect are the reports from Estonia and the

112  Research handbook on disability policy UK, which cite surveys suggesting that the number of people with disabilities participating in culture is relatively low (CRPD/C/EST/1, para. 227; CRPD/C/GBR/1, para. 327). The Estonian report also identifies the main obstacles to participation as low incomes, poor health conditions, poor physical accessibility to venues, and lack of supportive services (transportation, personal assistance service) (CRPD/C/EST/1, para. 227). The overall low cultural participation rates observed in those two reports seem, in reality, to constitute a general challenge, highlighted in a range of studies and sometimes in national disability strategies (although omitted in States Parties’ reports). For instance, the European Blind Union (EBU, 2012, p. 7) survey on access to culture shows that people with visual impairments have poor access to culture, and maintains that ‘[m]ost cultural funding pays little attention to the cultural equality of people with a (visual) disability’. In a survey from the World Blind Union and American Council of the Blind (2018) almost all participants (99%) claim that audio-description (which makes visual information of media and arts more accessible) needs to be more widely available. Martínez Amador (2016), in her provocatively titled paper ‘Deaf people do not go to the movies’, highlights the lack of accessibility of Spanish cinemas. An Italian report shows that there is widespread exclusion of disabled people, for whom lower levels of participation in culture are recorded compared to the rest of the population (Istituto Nazionale di Statistica (ISTAT), 2019, p. 99). A study carried out in 35 European countries suggests that there is limited knowledge of artists with disabilities (British Council, 2021). Furthermore, the Dutch implementation plan of the CRPD finds that people with disabilities participate less in cultural activities (Government of the Netherlands, 2018), while the German policy plan notes that persons with disabilities visit fewer cultural events than people without disabilities (Federal Government of Germany, 2018). We contend that these challenges and gaps have not yet been adequately highlighted in COs by the CRPD Committee. The Committee consistently calls on States to improve accessibility, to enhance data collection, and to adopt an approach to disability consistent with Article 1(2) CRPD, but relatively little is recommended as to cultural participation. As yet, the most typical recommendations under Article 30 have a relatively narrow focus, on issues of copyright. The need for enhancing a range of accessible formats – sign language interpretation, Braille, subtitles, Easy to Read, augmentative and alternative modes of accessible communication for people with intellectual or psychosocial disability – is often raised by the CRPD Committee under Article 21 CRPD (dealing with freedom of expression and access to communication). In this context, the Committee has not yet focused on the recognition and accommodation of diversity, although COs for Estonia issued in May 2021 (CRPD/C/EST/CO/1, para. 43(b)) refer to the need for awareness raising about ‘[D]eaf culture and the Estonian sign language’. While a common recommendation concerns enhancing access to sign language interpretation, this often relates to access to justice, communication, or public information, and only rarely are there specific recommendations on access to culture (for an exception see COs for Cyprus CRPD/C/CYP/CO/1, paras 45–46). The careful approach of the CRPD Committee in its COs seems to be an attempt to overcome the competing tensions between a growing awareness of sign language as a matter of individual identity requiring accommodation, and the appreciation of promotion-oriented minority language-type policies. This careful approach tallies with the views adopted by the CRPD Committee upon individual communications. In J.H. v Australia (CRPD Committee, 2018b), the failure to provide a sign language interpreter to a juror was considered. The Committee recalled that, pursuant to Article 21(b) CRPD, States Parties must take all appro-

The right of people with disabilities to participate in cultural life  113 priate 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. Additionally, the Committee recalled Article 21(e) CRPD, which stipulates that those measures include recognizing and promoting the use of sign languages. The CRPD Committee ascertained the violation of the principle of equality and stated that the ‘refusal to provide Auslan interpretation, without thoroughly assessing whether that would constitute a disproportionate or undue burden’, amounted to a discrimination on the basis of disability. Further, the CRPD Committee held that ‘the refusal to provide the author with the format of communication that she needed to enable her to perform jury duty, and therefore to express herself in official interactions’ amounted to a violation of Article 21(b) and (e) CRPD. In its assessment, however, the CRPD Committee did not engage in any appreciation of Deaf culture. A similar approach, although in dissimilar circumstances, had already been adopted in Beasley v Australia (CRPD Committee, 2016a) and Lockrey v Australia (CRPD Committee, 2016b). A different (yet very nuanced) approach is taken in Sahlin v Sweden (CRPD Committee, 2020) in which the CRPD examined a refusal of sign language interpretation for a lecturer at a Swedish University. In that case, despite his qualifications, the University had annulled the recruitment process, claiming that it would be too expensive to finance sign language interpretation to guarantee the author’s right to employment on an equal basis with others. The reasoning of the CRPD Committee, which, in the end, ascertains a violation of Articles 5 and 27 CRPD, revolves around the concept of reasonable accommodation and that of accommodating diversity. While neither the author of the communication nor the CRPD Committee address the issue of identity, the Committee endorses the view of the author that Swedish authorities ‘did not take into account the positive impact that hiring a deaf lecturer could have had on the attitude of students and co-workers to promote diversity’ (emphasis added).

CONCLUDING REMARKS: OPERATIONALIZING THE HUMAN RIGHTS MODEL IN THE CULTURAL FIELD The role of culture in the production of disability is acknowledged in disability studies (among others, Titchkosky, 2003; Waldschmidt, 2018). Beyond this area of scholarship, the recognition that culture plays an essential role in ending the marginalization experienced by persons with disabilities in society is more recent and has been driven by the implementation of the CRPD. Legal and socio-legal scholarly work on Article 30 CRPD is scant, and this chapter aims to address that gap. The analysis of reports to the CRPD Committee seem to signal that the right to participate in cultural life is no longer a ‘Cinderella’, namely, State Parties’ reports engage with access to arts, and, in some instances, recognize that cultural participation is key to combatting stigma and stereotypes. However, in order to fully operationalize the human rights model in the cultural field, a more consistent approach should be adopted. Comprehensive and participatory cultural policy plans related to people with disabilities could foster a systematic approach to the right to participate in cultural life in its twofold individual dimension and collective aspects. Such plans should accommodate the diversity of audiences with disability. They should also foster creation by artists with disabilities, through dedicated training and funding activities, without confining disabled people merely to amateur cultural practice or

114  Research handbook on disability policy therapeutic art. This is important to challenge the assumptions that disability art is merely ‘a hobby or form of therapy’ rather than a professional endeavor (Bang & Kim, 2015, p. 543). In order to effect change, inclusive cultural infrastructures and practices must be promoted by States Parties. In that connection, employment of persons with disabilities within creative industries in all roles is also imperative. Disability cultural policy plans should complement national disability strategies and employment strategies, fostering the mainstreaming approach that is mandated by Article 4 CRPD. Finally, the role of the CRPD Committee in pointing States Parties in the right direction is important. As yet, gaps and challenges have not yet been adequately tackled by the CRPD Committee, but a more comprehensive approach is beginning to appear in COs. The human rights model is being used overtly to assess the implementation inter alia of Article 30. For example, the LIs on the initial report of Brazil (CRPD/C/BRA/Q/1, para. 34) from 2015 require information on ‘whether the State party has taken measures to make libraries and other cultural services accessible to all persons with disabilities’ and on ‘any measures planned for introducing the human rights model of disability in cultural life’ (emphasis added). The COs for the Philippines from 2018, in dealing with Article 21 CRPD, express concern with the ‘lack of recognition and support of the specific cultural and linguistic identity of persons who are deaf through the promotion of Philippine sign language and deaf culture’ (CRPD/C/ PHL/CO/1, para. 38 – emphasis added). In a similar but less explicit vein, the COs for India (CRPD/C/IND/CO/1), from 2019, include a recommendation on Article 30 CRPD that is broader than copyright issues and makes reference to the necessary recognition of ‘cultural identities’ and participation of people with disabilities in cultural performances (para. 63). It is vital for the CRPD Committee to provide clearer recommendations to States Parties beyond the issue of copyright, and to engage with the content and obligations of Article 30 in light of the human rights model to harness the slow move towards the meaningful participation in culture of persons with disabilities and the recognition of their inherent dignity and diversity. Furthermore, States Parties should collect data on cultural participation and use them to design evidence-based policy solutions and effect change. The indicators designed to monitor the CRPD (Office of the High Commissioner for Human Rights (OHCHR), 2021), and scholarly efforts to produce indicators based on national surveys (Mitra & Yap, 2021), may support data collection and effective policies. As the metaphor used in the title of our chapter aims to highlight, Cinderella has received an invitation to the ball, but it remains unclear whether she is actually participating. In other words, while there is a move towards operationalizing the human rights model of disability in the field of culture, there is still a gap between the aspirations of Article 30 and its implementation.

ACKNOWLEDGMENTS This chapter is part of a larger research project entitled ‘Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity through European Union Law: Exploring New Paths – DANCING’ which commenced in September 2020 (https://​ercdancing​ .maynoothuniversity​.ie/​). This project has received funding from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation program (Grant Agreement No. 864182).

The right of people with disabilities to participate in cultural life  115

NOTES 1.

2. 3. 4. 5. 6.

Start of endnote. In this chapter we use person-first language in line with the CRPD (Kakoullis & Johnson, 2020; Broderick & Ferri, 2019). This terminology acknowledges individual abilities by placing the person before a disabling ‘identifier’ (Sabatello, 2019). Only occasionally, to avoid repetition, we use ‘disabled people’. However, we acknowledge that, among disability groups and scholars, different terms are used. End of endnote. Start of endnote. The chapter takes into account legal updates up until May 2021. At the time of writing this chapter, two of the 27 EU countries (Ireland and Romania) had not yet submitted initial reports. End of endnote. Start of endnote. This research project is entitled ‘Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity through European Union Law: Exploring New Paths – DANCING’ and has received funding from the European Research Council. End of endnote. Start of endnote. See https://www.ohchr.org/EN/HRBodies/CRPD/Pages/CRPDIndex.aspx. End of endnote. Start of endnote. Article 30(5) CRPD focuses on the participation of people with disabilities in recreational, leisure, and sporting activities, which must be ensured ‘on equal basis with others’, but these obligations remain outside the scope of this chapter. End of endnote. Start of endnote. See the report from Slovakia (CRPD/C/SVK/1, para. 385), which mentions a strategy for development of museums and galleries, and the initial report from Sweden which references a national strategy for digitization, electronic access, and digital curation (CRPD/C/SWE/1, para. 282). End of endnote.

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10. When the state does not care: disability rights in a context of multi-layered crises, instability and disablism Grace Khawam and Supriya Akerkar

INTRODUCTION The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) proposes to be the key guarantor for the rights of people with disabilities worldwide. However, it is criticized for its conceptualizations of individualized legal rights, in assumedly stable contexts where rights are state-protected (Meekosha, 2011; Lang et al., 2011; Meekosha and Soldatic, 2011). It is unclear how disability rights can be advanced in unstable and crisis-affected contexts in the Global South, especially non-signatory states. Lebanon presents an interesting case for such a context. A small country of the Middle East with Oriental and Western influences, the country has a tumultuous history of war and humanitarian crises, and constant instability at political, security and economic levels. It has witnessed a 15-year civil war (1975–1990), multiple Israeli bombardments and aggressions, a full-fledged war against Israel in July 2006, and two protracted refugee crises (the Palestinian refugee crises in 1948 and 1967, and the Syrian refugee crisis in 2011). In the past two years alone, Lebanon has witnessed multi-layered crises which have deeply affected the lives of all its residents. First, an unprecedented economic and financial crisis, ranked by the World Bank as being among the three worst crises in the world since the mid-19th century, with a rising inflation rate and a massive depreciation of the local currency (The World Bank, 2021). Second, political and civil unrest, after the Lebanon Uprising of October 2019 (“thawra” or revolution in Arabic), where thousands gathered in the streets to protest the dire living conditions and called upon governmental action. Third, the COVID-19 pandemic, which hit Lebanon a few months later, and where the initial governmental response to the pandemic was qualified as inadequate, with excessively strict lockdowns imposed that further exacerbated the economic downfall of the country (ILO and FAFO, 2020). Lastly, on 4 August 2020, a massive explosion that hit the heart of Beirut, due to a fire in a warehouse where 2750 tons of ammonium nitrate had been unsafely stored at the Port of Beirut due to governmental neglect (Geha, 2021). This resulted in a humanitarian disaster and was described as one of the most powerful non-nuclear explosions in history. These conflicts and disasters in Lebanon have historically exacerbated the dire situation of people with disabilities in Lebanon, with the destruction of rehabilitation institutions and increasing numbers of war injuries and war-afflicted impairments (Kabbara, 2012; Kingston, 2013). It is estimated that 10–15% of the population in Lebanon have a disability (Combaz, 2018), and more than 102,149 individuals are holders of the Disability Card (Abdallah, 2017). People with disabilities in Lebanon face a systemic lack of access to and provision of services, rights and resources. More than 80% are unemployed, and less than 1% access public 118

When the state does not care  119 education (Combaz, 2018). Healthcare services lack accessibility and affordability (Baroud, 2017). The Beirut Explosion also created “new disabilities” with approximately 800 people developing a chronic impairment due to injury, and these people have not received from the government any kind of compensation, free access to healthcare and needed surgeries, or work allowance due to the loss of livelihoods after the explosion (Hammoud, 2021; Ghsain, 2021). The state has also failed to ratify the UNCRPD, making Lebanon one of the 12 remaining non-signatory states in the world1. The main assumptions in common human rights discourses, which are also insinuated in the UNCRPD, are that (1) policies are state-led, disability rights are state-protected, and state capacity is assumed; (2) the context offers a certain level of stability to sustain policies and practices that promote disability rights; and (3) systems and policies to further disability rights seem to be independent of language, culture, religion and ethnicity (Meekosha, 2011; Lang et al., 2011; Akerkar et al., 2016; Akerkar, 2007; Akerkar and Devavaram, 2015). In contrast, Lebanon presents a complex context of instability, multi-layered crises, a segmented sectarian-based political system coupled with disablist2 governance (Khawam, 2020), in a non-signatory state of the Global South. The aim of this chapter is to explore how disability rights can be advanced in such a context, with a focus on the following research questions: 1. What are the contextual and political obstacles and challenges to disability policy formulation in Lebanon and how do they hinder/limit disability rights activation? 2. Which actors, dynamics, mechanisms and strategies influence the policy discourse in Lebanon towards disability rights activation? 3. How has the disability rights movement navigated through the Lebanese context to further the human rights of people with disabilities? 4. What learning can be gained for disability rights mobilization from the Lebanese case? Learning from the Lebanon context can be relevant not only in non-signatory states and/or conflict settings, but also in many international contexts where disability rights remain poorly enacted, and where the implementation of the UNCRPD continues to be lacking, due to limited state capacity, insufficient accountability measures and/or rampant discrimination (Aldersey and Turnbull, 2011; United Nations Department of Economic and Social Affairs, 2019).

METHODOLOGY Methods used include a critical review of the Lebanese disability policy context in academic and grey literature, and transcript analysis from interviews with seven disability activists in Lebanon, including four self-advocates,3 carried out between October 2020 and May 2021. Each self-advocate holds either a founding and/or leadership role in an organization of people with disabilities (OPD) in Lebanon. The other activists (who are not self-advocates) are parents of young people with intellectual disabilities. These interviews were part of a doctoral research project on job readiness among youth with intellectual disabilities in Lebanon,4 and aimed at developing a better understanding of disability rights and the disability policy context in Lebanon. Analysis in this chapter will explore tensions, power relations and dynamics in the disability policy process in Lebanon and explore who are the makers and users of the disability policy discourse.

120  Research handbook on disability policy The research methodology used is qualitative and is based on political activist ethnography, which focuses on “producing knowledge that can be mobilized by civil society activists and members of social movements” (Bisaillon, 2012, p. 608), and where the researcher’s aim is to expand their knowledge “to grasp how a ruling regime works with a view to transforming it” (Smith, 1990, p. 629). G.K. (author) is a researcher, disability activist and a disability service user (having a daughter with a disability) based in Beirut, Lebanon. Through this research project, she explores the disability rights movement in Lebanon across history and throughout the current crises, while acknowledging her own role in the disability movement5 and personally experiencing the crises while residing in Lebanon. S.A. (co-author) is an academic based in Oxford, UK, and an advocate for human rights and disability rights in the Global South. She is also involved with the disability rights movement in Lebanon.6 The co-authors provide an insider–outsider perspective to the issue of disability rights in Lebanon. The conceptual framework for analysis is based on the policy-as-discourse theory, coupled with human rights and development studies perspectives. Policy-as-discourse perceives social problems (and hence policy problems) not just as a matter of whether a specific policy has been advanced or opposed, but as socially constructed through the policy discourse of the various interest groups and actors involved (Bacchi, 2000; Shaw, 2010). The focus of policy analysis hence is not in the “problems”, but in the “problematizations”, namely how policy problems are identified and analysed, and how solutions are addressed (Kriztman, 1988 as cited in Bacchi, 2000, p. 48). This framework is relevant to be used in analysing the Lebanese context where, given the lack of disability policy (or lack of its implementation), it is pertinent to explore the problematization of disability discourse in policy and political discourses.

LEBANON’S APPROACH TO GOVERNANCE AND SOCIAL POLICY Before addressing disability policy and the advancement of disability rights, it is important to provide some background on public governance and social policy in Lebanon. The country’s social geography is complex and diverse and represents the most concentrated mix of ethnic and religious groups in the Arab Region (Jawad, 2002). Twenty-six per cent of the residents are estimated to be non-Lebanese (data extrapolated from UNHCR, 2020). There are 18 constitutionally recognized ethnoreligious subgroups known as “sects”, belonging to three religions, with the most prominent sects being Sunni Muslims, Shi’a Muslims, Maronites Christians, Orthodox Christians and Druze (Jawad, 2002). Although the state is by definition secular, its constitution (set out in 1926) is confessional (i.e. related to confessions of faith or sectarian religious subgroups): it ensures equal representation of each of the 18 religious subgroups into public functions, hence laying the foundations for a sectarian power-sharing political system (Geha, 2021; Nagle and Clancy, 2019). Although often presented as being the key to preserve peace and reduce tensions between confessional communities (Nagle and Clancy, 2019), the power-sharing system failed to prevent a civil war in Lebanon, which expanded between 1975 and 1990, and further created or sustained sectarian-based political parties. This led to the “sectarianization” of society after the Civil War, which was where “key belligerents – for example, state elites, proxy actors, and militia groups on the ground – manipulated and constructed ethnoreligious identities, typically through acts of extreme violence, to cleave society along communal lines in pursuit of strategic self-interest” (Nagle and Clancy, 2019, p. 2).

When the state does not care  121 This sectarianization reflected itself in all forms of state governance, including social policy and functioning. The public welfare sector is relatively weak, and relies essentially on non-governmental actors – partly funded by the government – to provide essential services and care for groups considered vulnerable, such as people with disabilities, older people and orphans (Jawad, 2002). Many of these organizations are sectarian-based, and since the government has not enforced any strict system to monitor their work, they dominate public and informal channels of service provision, giving them power and privilege over the groups they are serving. Many of their practices can be discriminatory based on political and/or sectarian partisan affiliation, and can further exacerbate social inequalities (Cammett, 2015). In addition to the confessional political system, the Lebanese state is characterized by weak structures to support legal frameworks and policy reform. This is essentially due to the centralization of power, outdated bureaucratic mechanisms, inefficiencies in administration and overall mismanagement (Haase, 2018). Its political economy is more that of a liberal laissez-faire system headed by what Jawad calls “a politically impotent bourgeoisie” (Jawad, 2002, p. 321). This political elite has been described as “resilient” (Geha, 2019, p. 66) and has been able to sustain its power through multiple forms of corruption (Adwan, 2004). Clientelism, a widespread form of corruption in Lebanon locally known as “wasta”, is manifested through the appointment of key public functions by each political leader to selected individuals within their own constituency, for political and financial personal gain (Nagle and Clancy, 2019).

DISABILITY POLICY IN LEBANON: ANALYSIS OF LEGAL FRAMEWORKS, CHALLENGES AND OBSTACLES With this macro-economic and political context in the backdrop, we take a closer look into disability policy in Lebanon. Law 220/2000 for the Rights of Persons with Disabilities in Lebanon The unique piece of legislature directly related to the rights of people with disabilities in Lebanon is Law 220, issued in 2000 (Law 220/2000, 2000). The passing of Law 220 was a significant achievement towards the advancement of disability rights in Lebanon in the post-war era, as it established the precedents for the rights of people with disabilities with regards to healthcare and rehabilitation services, education, employment, political participation, housing and transportation. It also allowed for the issuance of a national Disability Card, which is the only documentation providing entitlement to a list of disability benefits. Despite this achievement, the impact of Law 220 on improving the lives of people with disabilities remains severely lacking due to many flaws in its content and its implementation. First, it was issued before the declaration of the UNCRPD, which makes it outdated, and does not pave the way for the implementation of the CRPD, as some tenets are not aligned and might even seem contradictory to what the CRPD calls for (Baroud, 2013). Second, the law does not use the social model of disability, and instead adopts a medical perspective on disability. This is clearly shown in how the law defines disability in Article 2, as a reduced capacity (or incapacity) to perform life activities and participate in social life, mainly due to the impairment or lack of functional ability (Law 220/2000, 2000). This definition hence

122  Research handbook on disability policy fails to address the environmental, structural and attitudinal barriers that could shape the disability experience, and is not aligned with the classifications of disability in the International Classification of Functioning, Disability and Health (ICF) (World Health Organization, 2001) or the International Classification of Diseases 11th revision (ICD-11) (World Health Organization, 2021). In consequence, given that this definition was used to set the eligibility criteria for the Disability Card, the benefits provided through the card also adopt a medical and charity viewpoint and do not look at the holistic needs of people with disabilities with regards to inclusion and participation. Finally, Law 220 does not recognize the right to participate in public and political life; does not strictly promote inclusive education; fails to provide enforcement measures for employment quotas and support to make the labour market inclusive for people with disabilities; and does not present effective legal remedies for victims of discrimination (especially in the workplace). This is why the law can be described as fuelling “cruel optimism” (Berlant, 2007, p. 33) since it represented a series of incomplete promises which could not be materialized. Disability Policy Implementation and Monitoring, between Histories of Political Disablism and Clientelist Governance In addition to issues with the content of Law 220 and its relevance to the current context, there are problems with its implementation, enforcement and monitoring. Twenty years after the passing of Law 220, barely any implementing decrees have been issued, and the government failed to sustain policy reform and to ratify the UNCRPD which would safeguard these rights. There is no real recognition from the state of the contribution of people with disabilities in Lebanon, and it continues to perpetuate a medical model of service-delivery buttressed with charity discourse. As an example in relation to employment, Lakkis, a prominent self-advocate, contends: Today we see many violations happening against the rights of people with disabilities, one of which is denying them the right to access jobs. Many cases have been recorded of organizations either refusing to hire people with disabilities or granting those jobs for which they are overqualified. By the Law 220, this is illegal. Yet again this law on so many accounts is not enforced nor respected. (UNDP Lebanon, 2019 [online])

Many factors have attributed to this failure, and include: (1) the lack of political will to invest in rights-based discourses, as opposed to the usual client-based service provision feeding a political clientelism mentality; (2) the lack of public funding investment in disability policy reform; and (3) sectarian factionalism reflected in social policy (as described above), which opposes principles of universal rights and creates nepotism in access to services and care. During the Lebanon Civil War, militia and sectarian groups had set up medical and rehabilitation centres to support the injured and the newly disabled (Kabbara, 2012). These centres were the predecessors of numerous current non-governmental care institutions, which flourished through post-war funding, and have gained hegemony by being strongly politically affiliated to the political elite (Kingston, 2013). These sectarian-politically entrenched care institutions reinforce the charity discourse, perpetuating the image of people with disabilities as “passive service recipients”. They rely financially and administratively on their political counterparts, allowing political leaders to consistently use disability as a “political card” to showcase their “service to communities” and win electoral votes, while ironically doing

When the state does not care  123 nothing within their legislative or executive functions and political power at the state level to advance the rights of people with disabilities in Lebanon (Kingston, 2013). This clientelist approach was explained by one self-advocate: We are calling for collective action [to further disability rights], and they [government politicians] try to “shut you up” with individual favours.

Sectarian factionalism also infiltrated the functioning of the National Council for Disabled Persons (NCDP), which is a national committee joining together representatives from the Ministry of Social Affairs (MOSA), Organizations of People with Disabilities (OPDs) and rehabilitation institutions to advance disability affairs. Its structure, roles and responsibilities are defined by Law 220. Although bringing together at the same table these various groups with often opposing views was an accomplishment, the power influence was clearly unbalanced, with the care institutions having excessively high political leverage upon the MOSA (Kingston, 2013). And although the NCDP managed to successfully establish the Disability Card programme, OPDs felt that it was not doing enough to advance civil rights of people with disabilities. I submitted my resignation from it [the committee]. The committee considered that it was not its role to monitor whether people with disabilities were able to vote. (Quote from a self-advocate)

Sectarian and political affiliations soon became one of the criteria for election and/or appointment within the committee, which led to the dysfunction of the committee, thus reflecting the same fate as many of the current public sector institutions in the Lebanese sectarian power-sharing state. The transparency of the council was also questioned by the same self-advocate: This committee is dependent on the MOSA – so dependent on the minister. It should be an independent committee, not affiliated to MOSA. How can its role be about transparency and accountability?

Overall, the rights of people with disabilities in Lebanon have been constantly pushed aside, deprioritized and/or neglected, in a persistent disablism from the state across the past decades (Khawam, 2020). How have disability rights been advanced in the context described above? How did the disability rights movement navigate in this context?

THE DISABILITY RIGHTS MOVEMENT IN LEBANON The Birth of the Disability Rights Movement in Lebanon The Lebanon Civil War (1975–1990) coincided with the emergence of the global disability movement to reject the medical model of disability and to fight against barriers to inclusion. And while the war in Lebanon increased the need for immediate assistance to people with disabilities through care and rehabilitation institutions, it was also the birth (in the 1980s) of initial forms of self-organizing for groups of people with disabilities, inspired by this global movement. Triggered by the socio-economic exclusion of people with disabilities, OPDs started to dissociate from the traditional charities or service-oriented institutions and militia

124  Research handbook on disability policy groups, and to mobilize towards rights-based activism. They also had an active prominent role in leading anti-war and anti-violence protests during the Civil War, which were defining moments in making people with disabilities visible and heard in Lebanon (Kabbara, 2012). In the post-war era, community-based initiatives were launched by parents’ groups and self-advocacy groups to push against exclusionary residential care and institutionalization provided by the prevailing care institutions, towards inclusive schools and community-based day care centres (Kingston, 2013). The nascent movement was also determined to position itself within the national policy arena and invested in persistent and often disruptive protests to demand that the rights of people with disabilities are respected in Lebanon’s reconstruction and reforms. “We moved from being a marginalized group that has to be ‘looked after’ to a political force to be reckoned with” (Kabbara, interviewed by Kingston, 2013, p. 199). OPDs were also key players in the drafting and adoption of Law 220/2000, which was one of the first real victories of the disability movement in Lebanon (Kingston, 2013). A Constant Battle Against Institutionalization and Sectarianism The core of advocacy work from activists and OPDs is to shift the disability discourse from service provision and rehabilitation towards rights-based action, from segregation and institutionalization towards inclusion and community-based care and independent living. This opposes the mission of many service-based care institutions in Lebanon, which are financially supported by the Ministry of Social Affairs to continue providing institutionalized care, with no real accountability, quality standards and supervision of their work (Kingston, 2013). Some of the care institutions are also accused of perpetuating the charity model to gather more funds. We have seen this. Some institutions “destroy the personality” of the beneficiaries just by having them live in segregated places, and a lot of time because their staff lack competence due to limited resources. (self-advocate)

In addition to opposing the sectarian-based rehabilitation institutions which foster political clientelism, the disability movement has also increasingly shaped its non-sectarian political identity. After the Civil War and the reinstalment of what was said to be democratic elections, some OPDs strongly advocated for the right to vote and created watchdog committees during the Lebanese parliamentary and municipal elections to monitor the accessibility of voting polls (data from interviews with three self-advocates). The shift in identity politics was evident through the discourse during and after the popular Uprising of October 2019, the momentum of the revolution allowing the OPDs to take a secular political stance and join in the slogans “Killoun yaa’ni killoun” (“All of them” in Arabic), signifying their opposition to the entire ruling class and their sectarian politics (Ayoub, 2019). The Disability Rights Movement across Multi-Layered Crises The consecutive crises in Lebanon continuously shifted national priorities and pushed disability rights further behind in the country’s political agenda. One self-advocate said: We were always being told “now is not your time”.

When the state does not care  125 But every new crisis was also seen as an opportunity by the OPDs to put pressure on governmental leaders and to advocate for the inclusion of people with disabilities in crisis response strategies, such as by: advocating for accessible and inclusive reconstruction of damaged public buildings and schools after the July 2006 war and after the Beirut Explosion (Wehbi, 2012; Ghsain, 2021); active participation in the Revolution of October 2019 demanding rights for all (Ayoub, 2019; Khawam, 2022); opposing austerity and ensuring social protection throughout the current financial crisis (Lebanese Organizations of People with Disabilities, 2020); prioritizing the vaccination of people with disabilities in the COVID-19 pandemic (Disability Hub, 2021); and advocating for the rights and rehabilitation of the victims injured and/or newly disabled by the Beirut August 4 blast (Ghsain, 2021). Complex Internal Dynamics, Leadership and Representation It is crucial to state here that, despite all the progress made, there was never “one” unified disability movement in Lebanon. In reality, the disability movement, as presented in this chapter, is the result of actions from several groups and clusters of advocacy work, with often diverging paths and strategies. Despite continuous initiatives to join efforts and raise united demands, the movement has typically witnessed power struggles and in-house quarrelling over leadership and funding across the years, which has been generally detrimental to the advancement of disability rights. “We are not yet a coalition. Maybe we need a new generation in modern thinking”, suggests one activist, highlighting the necessary shift in mentality towards better cooperation. There is also an observed hierarchy within the disability movement, where issues of people with physical disabilities seem to be at the centre of disability activism, while the cause of people with other types of disability such as intellectual disabilities, is relatively marginalized or even absent from the policy discourse (Khawam, 2020). A self-advocate reflects: People who are deaf and people who have an intellectual disability – I felt that they were the most marginalized [within the movement], maybe because they are the less “vocal”, there are communication barriers, and in many cases the parents speak on their behalf.

More generally, though, as argued in the next section and despite complex internal and external dynamics, the vibrant disability movement in Lebanon has continued to push for human rights and dignity for people with disabilities, across the various multi-faceted crises the country has been going through, in a form of hopeful resistance (Khawam, 2020).

DISABILITY RIGHTS ACTIVATION IN A DISABLIST STATE: BARGAINING WITH THE STATE OR BY-PASSING IT? Lebanon can be compared to what Deets calls a “passive-aggressive state”, where overall inefficiency in the power-sharing structure leads to resistance to policy reform, as power-holders use vetoes to maintain the status quo and to preserve their power (Deets, 2006). Political governance through non-state institutions is a strategy used by those in power in this context (Deets, 2006), as can be seen by the heavy sectarianism and politicization of disability-focused non-governmental organizations and institutions in Lebanon which perpetuate the sectarian divide (Kingston, 2013). However, this has also pushed for alternative forms of functioning and mobilization, away from the sectarian status quo promoted by the political elite (Nagle,

126  Research handbook on disability policy 2018). Non-sectarian social movements in Lebanon have detached themselves from sectarian identities either through hegemonic compliance, constructive engagement or active resistance to the system (Nagle, 2018). This is also applicable to the disability movement: while very few actors of the movement have complied with the current state-of-affairs, the movement has essentially responded either by (1) engaging with the state – what we present here as a form of bargaining, mediated by international actors; or by (2) actively resisting the disablist governance of the state and developing alternative modes of mobilization which by-pass the state altogether. The following section will describe these two mechanisms of action. By-passing the State: Community Governance, Networks and Cross-Movement Solidarity In response to the inefficient and passively disablist state (Khawam, 2020), the disability rights movement actors have recourse to what Deets identifies as “communal governance”’ (Deets, 2015), illustrating how “significant functional communal autonomy can be achieved in the absence of coherent institutions designed to support it” in the Lebanese public policy context (Deets, 2015, p. 330). Examples of communal governance can be seen through OPDs in Lebanon investing in community-based development projects that would aim to “mimic” or model the principles and rights called for in these policies. “Even after the law 220 was passed, we realized there were still a long way for it to be applied. This is where we shifted our strategy towards creating models or prototypes for inclusion. We chose as a priority working on employment, education, political rights and the promotion of an accessible and inclusive environment”, says the leader of one of the prominent OPDs. The aims of these projects or models were not only to influence public opinion by increasing awareness on the rights of people with disabilities and reducing stigma, but also to build enough empirical evidence to increase pressure upon the state and policymakers towards the implementation of Law 220 and, later on, the ratification of the UNCRPD. This also meant introducing or contextualizing new models of inclusive development, such as the promotion of community-based rehabilitation in several areas in Lebanon in the 1990s, and the creation of inclusive education prototypes in some schools in Lebanon. It can be said that the movement’s actions have, in many instances, replaced the state; and compensated for the state’s inaction by building community grassroot models of inclusion. The movement was the driver for change, instead of change being state-led. Although these projects did not have “legal authority” and were not reflective of the official policy discourse which favoured institutionalization, they were developed with the aim to influence or ignite policy reform (Deets, 2015, p. 334). Another element of communal autonomy is reflected through networks, which are individuals, groups or entities tied together in a form of relational identity (Deets, 2015). Networks act as “organic and informal social systems” (Jones et al., 1997, p. 313) and highlight shifts in policy governance discourses involving various actors (Deets, 2015). In the context of Lebanon, the interactions between OPDs, civil society organizations, schools and private sector institutions towards the inclusion of people with disabilities, can be understood as representations of communal network governance. “We worked on protocols and signed agreements [with the private sector] – this helped increased employment for people with disabilities”, suggested a prominent self-advocate, illustrating how these networks helped promote inclusive employment as an example. Cross-movement solidarity (i.e. joining efforts with other civil society and human rights movements) is another community-based strategy used

When the state does not care  127 by the disability movement, which was reinforced through grassroot partnerships built during the October 2019 Uprising and successive street protests. We now explore the engagement of disability rights actors with international actors in the next section. Bargaining with the State: International Organizations as Mediators of Policy Reform Given the significant gaps left by the Lebanese state in responding to basic needs, international aid agencies and NGOs have historically been key players in Lebanon’s humanitarian and development plans, filling gaps left by the government across various sectors, from education to health to agriculture and industry. While international aid actors largely overlooked disability issues until 2016–2017 (Combaz, 2018), two recent examples showcase the increased recent involvement of international agencies, such as United Nations organizations, in promoting the rights of people with disabilities in Lebanon. These include: (1) joint action between the International Labour Organization (ILO), UNICEF and OPDs towards the development of a comprehensive national rights-based social protection system; and (2) a proposal with UNICEF and ILO towards the design of a National Disability Allowance (ILO and UNICEF, 2021). These initiatives invite a “constructive dialogue with the government” (Lebanese Organizations of Persons with Disabilities, 2020, p. 1), and hence highlight the role played by UN agencies in initiating, mediating or catalysing policy dialogues, and supporting the government technically and financially in policy reform. However, disability activists have different views and opinions about this role. On one hand, some disability activists perceived the UN agencies’ leverage on the government as positive and strategic: They have influence to talk to the government. The government might listen to them, instead of listening to the OPDs,

said one self-advocate. Another self-advocate added: I am happy with the work of the ILO and UNICEF and what they are doing. Things might take time to change, but I do believe that we are moving towards change. […] It is ok if things at least only get fixed on paper. Even if the policy is not implemented. At least this would be a first step forward.

On the other hand, other disability activists seemed more cautious of this role: The UN agencies won’t make the government angry; they are diplomatic with the government. The UN agencies will not contradict the government. They can be supportive of OPDs, but you can’t depend on them. They can influence the government – but it is not the same “dose” as OPDs. They bring technical support to governments but is the government ready to implement?

said a self-advocate. Another self-advocate contended: I see them [international organizations] as double-faced. They support us, but they also work with the government. They are our allies, but in the end they are diplomatic with the government.

Activists also highlighted some power imbalances where UN agencies might overuse their power:

128  Research handbook on disability policy […] in the end, they [UN agencies] will do what they decide, it is like as if we [OPDs] are working for them.

International NGOs (INGOs) are other actors that may come into play with a bargaining role, as they coordinate directly with local state actors such as primary healthcare and social development centres. They are perceived by the activists as having a positive role in service provision; however, they are led by their own agendas and funding streams: INGOs are less bound by the government [than UN agencies], but they are also tied by their funding. And once a project ends, they leave you all alone,

contended one self-advocate and head of an OPD. “The INGOs are good, but this also varies with their individual agendas” said another self-advocate. However, one criticism was presented of the INGOs: activists felt that they do not do enough towards promoting inclusion, since they still support, fund or collaborate with rehabilitation and care institutions.

TOWARDS DISABILITY POLICY REFORM IN LEBANON: FRAMING DISABILITY IN THE HUMAN RIGHTS DISCOURSE What change is to be sought out? Which reform is needed now? Is there a need for a new law, or rather a need to update the current Law 220? Activists have various views on this question: [Law 220] is an obsolete law now. It is not consistent with the UNCRPD nor the SDGs. It is very old now, we either need a new law, or to re-write Law 220 and change it in a radical way. We need a new disability assessment in Lebanon, regarding classification, etc. and relating the right to the need in terms of allowances and entitlements,

said one self-advocate. “Law 220 now is of no use, even if it includes a quota, the country has changed a lot” said another self-advocate. Some activists also contend that the ratification of the UNCRPD would not be enough. The answer to these questions requires situating the disability rights movement in Lebanon within the global human rights discourse, using the policy-as-discourse theory. Problematizing Disability Rights in the Human Rights Discourse in Lebanon The UNCRPD is a concrete proposal for the affirmation of the universal human rights of persons with disabilities, and was fought for by global disability movements, given that the earlier human rights laws, namely the Universal Declaration of Human Rights (1948) and the International Covenants on Civil and Political Rights; and Social, Economic and Cultural Rights (1966), had failed to deliver against the discriminations of people with disabilities and the affirmations of their dignities in societies (Kanter, 2014). We find that the Lebanese disability movement also has had to navigate through similar tensions between the universality of human rights and the particularity of the disability rights in their interactions with fellow human beings and civil society groups. Examples are shown through the movement’s participation in the Lebanese revolution of 2019 and anti-war campaigns (between 1995 and 2000) which were about affirming human rights and the rule of law for all Lebanese people.

When the state does not care  129 Disability activists position themselves as both human rights and disability activists in such wider societal interactions: I am a disability and human rights activist. This is how I present myself to people who do not know me,

says a leading self-advocate. In relation to the 2019 Uprising, a self-advocate contends: I was part of the revolution movement. I did not feel that we needed a separate “revolution” for those with disabilities. I felt […] we should be part of the bigger movement of the revolution.

Yet the disability activist also feels that more should have been done during the 2019 Uprising by other civil society organizations in recognizing disability rights while demanding universal human rights for all with better cross-movement solidarity. The politics of the Lebanese disability movement also provide a good critique of some of the assumptions underlying human rights and the UNCRPD that we have identified in our introductory section, namely that rights are state-protected and are independent of cultures. These underlying assumptions are modelled on the notion of abstract individual rights, separated from the social context lived by people with disabilities and mediated through the intersubjective relations within a society (Akerkar and Devavaram, 2015; Akerkar et al., 2016). The earlier discussion on engagements with communities by the OPDs in Lebanon is based on an understanding that it is important to engage with the intersubjective social worlds of people with disabilities in order to further their individual rights. Community initiatives by OPDs have included home and community actions, awareness raising within families and local communities to confront the barriers to the participation of people with disabilities and to realize their abstract individual rights. By-passing the state, OPDs have adopted the incremental strategy of promoting disability rights at local levels (Kingston, 2013). Similarly, the recognition from the disability movement in Lebanon that it cannot depend on the state to further the rights of people with disabilities defines the movement’s politics and approaches to the UNCRPD. While acknowledging the importance of the UNCRPD in furthering the human rights of people with disabilities, disability activists also highlight that its mere ratification will not lead to substantive changes in the policies and practices needed to make the Lebanese society more inclusive. This partly comes from their experience in relation to the implementation of Law 220 which has remained mainly on paper, and partly from their evaluation of the “rule of law” and the “political class” in Lebanon. A disability activist contends: We need to ratify the UNCRPD. But even if we do ratify the UNCRPD, as long as we are in a country which does not respect human rights and does not have accountability, nothing will change. And this is what we need to work on now, to have a strong state with the rule of law.

For yet another disability activist: UNCRPD will not be enough. It is because our political class do not care.

These narratives highlight the awareness among disability movement actors that the affirmation of disability rights via affirmation of their human rights through the UNCRPD is contin-

130  Research handbook on disability policy gent upon their recognition as full citizens via a social contract by a neutral (non-sectarian and non-clientelist) state that does not exist in Lebanon. Given these reflections, how should the relation between the UNCRPD, human rights and disability rights movement be conceptualized in Lebanon? We propose here the use of Rancière’s conception of human rights to formulate this relation. Rancière (2004, p. 302) contends “the Rights of Man are the rights of those who have not the rights that they have and have the rights that they have not”. That is, to the extent that the excluded act as though they have human rights (by mobilizing them), they can be said to have those rights that they still do not have. Hence, the value of mobilizing the UNCRPD and its human rights claims by the Lebanese disability movement, a disenfranchised group, lies in questioning the existing social hierarchy and making normative and substantive claims to the equality of people with disabilities with their fellow country residents, as if they have those equality rights (Akerkar, 2020). More generally, the Lebanese context shows that the disability movement bridges the space between universal human rights and particular disability rights; individualist human rights and the intersubjective lived lives of people with disability through their political actions of affirming the equality claims of people with disabilities in all social realms.

CONCLUSION: A NEW MODEL OF ACTION In conclusion, Lebanon presents a rich and complex case of government failure to reinforce disability rights policies and to enact human rights for all citizens. Where most states are assumed to be patrons of human rights and protectors of citizen rights, Lebanon has witnessed alternative forms of community-based actions and activism to compensate for (and sometimes resist) governmental malfunction. The disability movement has either bargained with the state by engaging third-party external mediators, or by-passed the state and created alternative networks for disability rights activation. Several lessons on disability policy and human rights can be drawn from the Lebanon context. First, disability policies and international conventions such as the UNCRPD present significant limitations in contexts where the rule of law is lacking, and systems for protection, implementation and monitoring of social policies are weak, fragmented and/or dysfunctional. Disability policy reform (through amendments to national laws and policies and ratification of the UNCRPD) is a necessary step but not the main venue through which the lives and well-being of people with disabilities are improved or protected. “We cannot wait for the state” is a common reflection among all disability rights actors in Lebanon, acknowledging the imminent and sustained need to take matters “in their own hands”, and build parallel community-based mechanisms to ameliorate the living situation of people with disabilities. Second, solidarity is key in shaping the disability discourse and is a true (re)affirmation of universal human rights in such contexts. Various forms of communal solidarity have been historically observed in Lebanon and strengthened after the revolution of October 2019 and the Beirut Explosion, in what Geha presents as community-driven resistance (Geha, 2021). “Constructive resistance occurs when people begin to build the society and polity that they desire independently from the structures that govern their lives” (Sørensen, 2016 as cited in Geha, 2021, p. 13). Solidarity involves co-joint actions in communities, but disability activists also talked about solidarity across civil rights movements. Cross-movement solidarity solidifies the disability rights discourse in human rights advocacy, positioning the rights of people

When the state does not care  131 with disabilities on an equal basis with others, and was identified by one self-advocate as “the only way forward now”. Third, the role that can be played by third-party actors, such as the international community, UN agencies and international organizations, is highly significant, given the power and level of influence these actors present. Their role needs to be further explored and strengthened beyond diplomatic programming and more towards strategically shaping the national disability rights discourse. Finally, and most importantly, where disablism is state-induced and politically driven, disability rights activation cannot but be a political endeavour. According to Shakespeare and Watson (2001), disability politics is first and foremost about establishing disability as a political issue, a matter of political power and oppression, revolving around the identity of a minority group, disabled by society (Shakespeare and Watson, 2001). The disability movement in Lebanon has historically shaped its political identity and gradually re-enforced its anti-sectarian stance. Strengthening this identity using a rights-based approach and fostering proactive citizenship (Helou, 2021) are important steps towards political change and policy reform (Memari and Hafizi, 2015). The narratives in this chapter have illustrated a new model for action towards policy change, relevant not just in non-signatory states and/or unstable contexts, but also in countries where the UNCRPD implementation continues to be lacking or where accountability measures are insufficient (Aldersey and Turnbull, 2011). The model calls for building evidence for policy development and advocacy through an incremental bottom-up approach, from grassroot interventions to international actors in the disability rights arena. The political mainstreaming of disability rights in human rights battles is imperative to shaping the policy discourse and to pave the way for structures and systems to protect the rights of all citizens alike. This is not only a call for political and human rights activists, but also for activist scholars and academic and community researchers to join efforts and further expand knowledge and evidence-for-policy research on the role of non-state actors and alternative modes of action in disability rights enactment and practices.

NOTES 1.

2. 3. 4. 5.

Start of endnote. At the time of writing, Lebanon had not yet ratified the United Nations Convention on the Rights of People with Disabilities (UNCRPD). However, the Lebanese Council of Ministers issued a decision on 6 February 2023 to initiate a decree for the ratification of the UNCRPD, which may lead to an eventual ratification of the Convention. This however appears to be a slow process given the country’s weak governance, political tensions, and record of poor policy implementation, which were all issues raised by the disability activists interviewed in this research. End of endnote. Start of endnote. While the authors acknowledge that the terms “disablism” and “ableism” can sometimes be used interchangeably, they are highlighting the discriminatory and oppressive nature of the absence of adequate enforced policies, hence the use of the term “disablism”. End of endnote. Start of endnote. All four self-advocates identified as being disability activists (confirmed through the interviews). Two had a physical disability, one had a visual disability and one had an intellectual disability. End of endnote. Start of endnote. G.K. is a doctoral researcher and S.A. is a member of the supervisory team. End of endnote. Start of endnote. G.K. holds leadership positions within two disability advocacy networks: Steering Committee Member of the Disability Hub, located at the Centre for Lebanese Studies since

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6.

September 2019, and Board Member of the Lebanese Down Syndrome Association since August 2018. End of endnote. Start of endnote. S.A. is the founder member of the Disability Hub, located at the Centre for Lebanese Studies, Beirut, and is involved with the Hub’s campaigns on disability rights in Lebanon. End of endnote.

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When the state does not care  133 Ghsain, N. (2021). Bodies not their own: The neglected victims of Beirut’s port explosion. The Legal Agenda. Retrieved from https://english.legal-agenda.com/bodies-not-their-own-the-neglected-victims ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -of-beiruts-port-explosion/ ​ ​ ​ ​ Haase, T. W. (2018). A challenging state of affairs: Public administration in the Republic of Lebanon. International Journal of Public Administration, 41, 792–806. Hammoud, Z. (2021). The victims of August 4 demand the lifting of immunities and the rights of 800 disabled persons. The Legal Agenda. Retrieved from https://legal-agenda.com/%d8%b6%d8%ad%d8 ​ ​ ​ ​ ​ ​ ​ ​ ​ %a7%d9%8a%d8%a7-4-%d8%a2%d8%a8-%d9%8a%d8%b7%d8%a7%d9%84%d8%a8%d9%88 ​ ​ ​ ​ ​ ​​ ​ ​ ​ ​​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ %d9%86-%d8%a8%d8%b1%d9%81%d8%b9-%d8%a7%d9%84%d8%ad%d8%b5%d8%a7%d9 ​ ​​ ​ ​ ​ ​ ​ ​ ​ ​​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ %86%d8%a7%d8%aa-%d9%88%d8%a8%d8%ad%d9%82%d9%88%d9%82/ ​ ​ ​ ​ ​​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​. Helou, J. P. (2021). Moving confidently into the future: Persons with disabilities as proactive citizens. In The Issue of Disability in the Arab World: A Roadmap for the Future. In press. ILO & FAFO (2020). Facing Multiple Crises: Rapid Assessment of the Impact of COVID-19 on Vulnerable Workers and Small-scale Enterprises in Lebanon. Retrieved from https://www.ilo.org/ ​ ​ ​ ​ wcmsp5/groups/public/---arabstates/---ro-beirut/documents/publication/wcms_747070.pdf ​ ​ ​​​ ​​​ ​ ​ ​ ​ ​ ​ ILO & UNICEF (2021). Delivering on the Urgent Need for a National Social Assistance System: Putting in Place Social Grants. Retrieved from https://www.unicef.org/lebanon/media/6361/file/BRIEF ​ ​ ​ ​ ​ ​ ​ ​ ​ _Building_the_social_assistance_system.pdf.pdf ​ ​ ​ ​ ​ ​ Jawad, R. (2002). A profile of social welfare in Lebanon: Assessing the implications for social development policy. Global Social Policy, 2(3), 319‒342. Jones, C., Hesterly, W. S. & Borgatti, S. P. (1997). A general theory of network governance: Exchange conditions and social mechanisms. The Academy of Management Review, 22(4), 911‒945. Kabbara, N. (2012). Non-violent resistance and reform in Lebanon. In E. Picard & A. Ramsbotham (Eds), Accord Issue 24: Positive Peace for Lebanon: Reconciliation, Reform and Resilience (pp. 32‒34). Conciliation Resources. Kanter, A. S. (2014). The Development of Disability Rights under International Law: From Charity to Human Rights. Routledge. Khawam, G. (2020). “What about us?”: The unheard voices of the Lebanese Revolution. Kohl: a Journal for Body and Gender Research, 6(2), 221–229. Khawam, G. (2022). “A Nation for All”: The Lebanon Uprising and disability rights in Lebanon. In J. Karam & R. Majed (Eds), The Lebanon Uprising of 2019: Voices from the Revolution. London: Bloomsbury Publishing. Kingston, P. W. (2013). Reproducing Sectarianism: Advocacy Networks and the Politics of Civil Society in Postwar Lebanon. Suny Press. Lang, R., Kett, M., Groce, N. & Trani, J.-F. (2011). Implementing the United Nations Convention on the Rights of Persons with Disabilities: Principles, implications, practice and limitations. Alter, 5, 206–220. Lebanese Organizations of Persons with Disabilities (2020). Towards a Rights-Based and Comprehensive Social Protection System for Lebanon: Supporting the Inclusion and Empowerment of Persons with Disabilities. Initial position paper. Beirut, May 2020. Meekosha, H. (2011). Decolonising disability: Thinking and acting globally. Disability & Society, 26, 667–682. Meekosha, H. & Soldatic, K. (2011). Human rights and the global south: The case of disability. Third World Quarterly, 32, 1383–1398. Memari, A. H. & Hafizi, S. (2015). People with intellectual disability and social-political life participation: A commitment to inclusive policies in less developed countries. Journal of Policy and Practice in Intellectual Disabilities, 12, 37–41. Nagle, J. (2018). Beyond ethnic entrenchment and amelioration: An analysis of non-sectarian social movements and Lebanon’s consociationalism. Ethnic and Racial Studies, 41, 1370–1389. Nagle, J. & Clancy, M.-A. (2019). Power-sharing after civil war: Thirty years since Lebanon’s Taif Agreement. Nationalism and Ethnic Politics, 25, 1–8. Rancière, J. (2004). Who is the subject of the rights of man? South Atlantic Quarterly, 103, 297–310. Shakespeare, T. & Watson, N. (2001). Making the difference: Disability, politics, and recognition. In G. L. Albrecht, K. Seelman & M. Bury (Eds), Handbook of Disability Studies (pp. 546‒564). Sage Publications.

134  Research handbook on disability policy Shaw, S. E. (2010). Reaching the parts that other theories and methods can’t reach: How and why a policy-as-discourse approach can inform health-related policy. Health, 14(2), 196–212 Smith, G. W. (1990). Political activist as ethnographer. Social Problems, 37, 629–648. The World Bank. (2021). Lebanon Sinking into One of the Most Severe Global Crises Episodes, amidst Deliberate Inaction. The World Bank Press Releases. Retrieved from https://www.worldbank.org/en/ news/press-release/2021/05/01/lebanon-sinking-into-one-of-the-most-severe-global-crises-episodes ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ UNDP Lebanon. (2019). On the International Day of Persons with Disabilities: Four Measures For Lebanon to Become a More Inclusive Country. UNDP Lebanon Stories [Online]. Retrieved from https://www.lb.undp.org/content/lebanon/en/home/stories/Progress-Dev-Nation/Progress-Dev ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -Nation/Progress-Dev-Nation.html ​ ​ ​ ​ UNHCR (2020). Regional Refugee and Resilience Plan: Regional Strategic Overview 2021–2022. Retrieved from https://reporting.unhcr.org/sites/default/files/SYRIA%203RP%20REGIONAL ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ %20STRATEGIC%20OVERVIEW%202021-2022.pdf ​ ​ ​ ​ United Nations Department of Economic and Social Affairs (2019). Disability and Development Report: Realizing the Sustainable Development Goals by, for and with Persons with Disabilities. New York: United Nations. Wehbi, S. (2012). Advancing a disability rights agenda in a context of war: Challenges and opportunities. International Social Work, 55, 522–537. World Health Organization (2021). International Classification of Diseases 11th Revision (ICD-11), May 2021 edition. Geneva: World Health Organization. World Health Organization (2001). International Classification of Functioning, Disability and Health (ICF). Geneva: World Health Organization.

11. Decentralization, empowerment and grassroots engagement: advocacy organizations navigating the implementation of codified disability rights in Malawi Sarah I. Huque

INTRODUCTION Recent United Nations (UN) materials highlight the continued exclusion of people with disabilities1 from society and enjoyment of human rights (United Nations, 2018). Studies which attempt to monitor the implementation of disability rights consistently find a continued and ubiquitous disparity in the realization of disability human rights in societies globally, both in multi- and single-nation studies (see for example, Chibaya, Govender and Naidoo, 2021; Mitra and Yap, 2021). This is the case in Malawi, where there has been an evolution of disability rights legislation over time, with less work done on implementation. As Malawi has participated in international systems, such as the UN, national leaders have passed human rights legislation to demonstrate Malawi’s progress to the international community. This included Malawi’s 2009 ratification of the UN Convention on the Rights of Persons with Disabilities (UNCRPD), as well as prior ratification of ILO and UN conventions, and the development of a National Policy on the Equalization of Opportunities for Persons with Disabilities in 2006.2 In 2012, Malawi passed its Disability Act, which contains provisions for responding to violence, accessibility requirements, and disability support and services. This legislation enshrined the rights of people with disabilities into Malawian law, as had long been advocated for by a broad coalition of disability advocates across Malawi. This coalition included the Federation of Disability Organizations in Malawi (FEDOMA). FEDOMA is an umbrella organization for Disabled Persons Organizations (DPOs), consisting of a central headquarters with paid staff and leadership, plus a volunteer grassroots base drawn from its constituent DPOs’ members. Haang’andu (2020) notes that the increase in African nations’ codification of human rights (with little action on implementation) may be a form of posturing toward dominant global powers. As a result, legislation exists but is not wholly enacted ‘on-the-ground’. This view sees international forums as the primary circuit of meaning for legislation such as Malawi’s Disability Act and the UNCRPD. However, these legal resources do also exist within Malawi’s national system and can be used by activists with a vested interest in working toward implementation. The continued development, production and circulation of legal resources into schematic norms by advocates is part of a relational process through which advocacy effects change. Considering the ways in which one majority-world disability umbrella organization, FEDOMA, engages in these processes can provide insight and inspiration for approaches to rights implementation worldwide, and especially in low-resource settings such as Malawi. 135

136  Research handbook on disability policy Methods In this chapter, I draw on findings from a broader research project with FEDOMA’s District Disability Forums (DDFs), exploring advocates’ work toward activation and implementation of disability (human) rights. The fieldwork referenced in this chapter was carried out from November 2018 to January 2019, after a familiarization/project design period (September– November 2017). Participant observation was undertaken throughout fieldwork; 22 DDF members were interviewed (20 people with disabilities and two parents of children with disabilities) from four districts (D1, D2, D3, D4), as were eight FEDOMA staff (Headquarters). 16 interviewees were women, 14 men. Interviewees were asked whether they preferred a pseudonym or their real name be used in outputs; in this chapter, names with an asterisk (*) after them are pseudonyms. I use Giddens’ (1984) structuration theory as the foundation for the analysis in the chapter, as it is implicitly concerned with relationships and processes, both of which are key to rights implementation work. Giddens (1984) holds that systems are made of structures (consisting of ‘rules’ and ‘resources’) and agents that mutually constitute one another over time and across spaces. Structuration theory can be used to emphasize the importance of contextual – space, place and time – impacts on these interactions between structures and agents. Drawing on Sewell Jr.’s (1992) critique of Giddens (1984), I utilize the broader term ‘schema’ in place of ‘rules’ to encompass a more fluid notion of the social, cultural and legal constraints and enablements within which advocates work. This chapter contributes a consideration of the ways in which the implementation and activation of codified disability rights is an ongoing process which advocates must navigate based on the particulars of their context. In the next sections, I introduce FEDOMA and briefly provide some background on human rights and disability in Malawi. After this, drawing on in-depth interviews and participant observation, I use a geographical lens to consider the ways in which disability advocates (i) develop cross-scalar, ‘reference’ resources in their drive for rights implementation, (ii) prioritize rights, and (iii) access, engage and perform voice within different spaces, communicating with a range of audiences through word, action and presence. In the final section, I discuss the implications of this chapter for disability organizing in Malawi and beyond.

INTRODUCTION TO FEDOMA FEDOMA was founded in 1999 (Chauluka and Chiumya, n.d.) by disability rights activists to unite DPOs and form a stronger disability rights movement. It is primarily funded by international donors and partnerships. Many of FEDOMA’s paid staff are people with disabilities, and only people with disabilities may hold the three main managerial positions (Executive Director, Head of Finance, Head of Programmes). The organization foregrounds intersectionality and local relevance in their practices, particularly emphasizing women’s and youth’s issues (FEDOMA, 2019). After the passage of the Disability Act, FEDOMA’s focus shifted away from advocating for the passage of legislation toward ensuring implementation of the Act’s provisions. This partial pivot reflects Malawi’s decentralized approach to the implementation of national legislation, as codified in the 1998 Local Government Act. National legislation is often implemented at district level; Malawi’s 28 districts are its main administrative units, distributed across three regions (Northern, Central, Southern). As part of their focus on

Decentralization, empowerment and grassroots engagement  137 rights implementation, FEDOMA developed the Disability District Forums (DDFs), locally based groups consisting of volunteers drawn from constituent DPOs, to monitor and advocate for rights implementation at the local (district) level.

CONTEXT: HUMAN RIGHTS AND DISABILITY IN MALAWI In Malawi, the ratification of international legislation proclaimed the country’s commitment to equal employment opportunity, reasonable accommodation and disability human rights. Nationally, the Handicapped Persons Act 1971 formed the Malawi Council for the Handicapped, a quasi-governmental organization that is tasked with implementation of (the limited available) government programming for people with disabilities, e.g., vocational training. The 2012 Disability Act formalized Malawi’s commitment to the human rights of people with disabilities (as set out in the UNCRPD) and included specific provisions designed to promote the economic and social inclusion of people with disabilities. Despite this increasingly reformist legislative context, many people with disabilities (in Malawi and globally) face a high level of social stigmatization, exclusion and ostracization, in direct violation of their human rights. Booyens, van Pletzen and Lorenzo (2015, p. 7) argue ‘the gap is... wide between the goals for the social inclusion of persons with disabilities... and the contextual realities of community disability practice in rural areas of developing countries.’ Part of addressing this gap means addressing place-based cultural beliefs about the meaning of disability. Disability is often seen as relating to witchcraft and/or superstition in Malawi. Health workers in Paget et al.’s (2016) study highlighted a lack of biomedical knowledge among parents and carers about long-term impairments caused by malaria and meningitis, turning instead to alternative explanations such as witchcraft. Beliefs around witchcraft and superstition are especially dangerous with regard to albinism (Rohwerder, 2018). Some Malawians believe that persons with albinism are not human and/or are ‘magic’. Their bodies are used in rituals intended to help individuals gain money, status or fame (Setume, 2016), leading to a high level of violence against people with albinism. The supposedly ‘magical’ nature of disability means that people with disabilities can be exploited in other ways. Some believe that having sexual intercourse with a person with a disability can cure HIV/AIDs, leading to sexual assaults (Setume, 2016). Banks et al. (2017) note that perpetrators of violence against people with disabilities may receive lighter punishments from authorities, especially in cases of domestic or household violence, due to cultural stigmatization. The human rights of Malawians with disabilities are violated or unenforced in other sectors as well. Malawian society is often physically inaccessible for people with disabilities, despite the Disability Act’s accessibility provisions for new buildings. The majority of previously existing public infrastructure has also not been redeveloped. Even if spaces have adaptations for some types of disabilities, many people with disabilities lack mobility devices or other aids to help them navigate and engage in public places (Eide and Ingstad, 2013). While inclusive education has long been on both advocates’ and politicians’ platforms, access to schooling remains a challenge. A 2004 nationally representative survey found that 53.5% of Malawians with disabilities had never attended school, compared to 25.7% of non-disabled Malawians (Eide et al., 2011).

138  Research handbook on disability policy Provision of services for people with disabilities is lacking, though this is exacerbated by the dearth of public services in Malawi in general. Booyens et al. (2015) conducted a review of studies on disability in Southern African countries, including Malawi, which found: Individuals and households with a member with a disability experienced substantial gaps in access to services, social and economic status, access to information and to assistive devices and social participation (Eide and Ingstad 2013). This translates into a denial of equal opportunities for persons with disabilities to participate and contribute in their community and society, which is a violation of their human rights. (p. 2)

Eide and Ingstad (2013) highlight the geographical divide in the experience of disability for Malawians; those who live in rural areas have less access to the limited services, support, specialized education and health care available. This geographical divide exacerbates existing challenges of life within the structural constraints of Malawi, including widespread poverty, limited transportation and corruption among leaders and service providers (Banks et al., 2017).

VOICE AS A RESOURCE FOR DISABILITY ORGANIZING Voice is a key resource in FEDOMA’s approach to advocacy, given the general resource constraints of the Malawian setting. The majority of its grassroots volunteers work with limited financial resources, making interactions in everyday social spaces important opportunities for activism. Voice is a relational, evolving resource. Scholars such as Swerts (2015) highlight the importance of considering the context, audience and motivation behind expressions of voice by activists. Voice includes activists’ roles in disseminating facts and policy (Krumer-Nevo, 2009), i.e., the existence of codified disability rights. Performances of voice can be individualized or collective depending on context, drawing on personal experiences and group repertoires. Voice may initially be seen as privileging the vocal, which is not an avenue of expression available to all people. However, the term is used within the literature and by the disability rights activists I engaged with and has complicated, highly context-specific meanings. We can expand our thinking by incorporating the physical occupation of space and other forms of expression into our conceptualization of voice. As Ladson-Billings (1998, p. 13) stated, voice is ‘naming your reality’. Individuals express this concept – their evolving lived reality – in a multitude of embodied ways.

DEVELOPING RESOURCES FOR USE ‘EX-SITU’ AND ACROSS SCALES During fieldwork, it became clear that the movement of knowledge and voice-resources across the scales of FEDOMA was crucial to the work of advocates seeking rights implementation.3 Often, the scales at which FEDOMA and its DDFs undertook their advocacy work corresponded with their physical position within the organization; these scales also necessarily interact and shift. FEDOMA headquarters’ staff and managers, working at the ‘centre’ within spaces of economic and legislative power, handled much of the work done at the national and international scales; DDF members were included in this work, though it was coordinated through FEDOMA. The DDFs generally focused on the district scale, working within a variety

Decentralization, empowerment and grassroots engagement  139 of spaces in a given district. However, they used resources that were developed through the headquarters’ national-level advocacy work, including the passage of legislation and national awareness-raising campaigns. The UNCRPD was considered the ‘gold standard’ of disability legislation by FEDOMA staff and volunteers; as a resource it provided (international) legitimacy and guidance on standardized rights to which people with disabilities are entitled. Despite the problems raised by academics (including Haang’andu, 2020) about applying a Western-centric disability paradigm to African countries, FEDOMA advocates found this internationally legitimate grounding useful: We trained [the DDFs] about the legal provisions... in Malawi. The first one, the UNCRPD. And then we also give them capacity on… the Malawi Disability Act 2012… They should be able to understand them. And when monitoring, they should... know what they are monitoring about. We also… involve them, teaching them, giving them skills on advocacy… They can demand their rights. From the? Stakeholders… We make sure we train them on how they can approach the stakeholders. (Eva*, Staff, Headquarters)

National legislation also provided a key resource which enabled people with disabilities’ expressions of voice as embodied knowledge. This was in part through the participation of FEDOMA and DPOs in developing and monitoring implementation of legislation: As you know, Malawi ratified the UNCRPD in 2012. So, this project is [monitoring] how Malawi is implementing… all the things… which have been enshrined in the UNCRPD. Like the issue of reasonable accommodation… Everything else that has to do with the implementation itself... Right now we’ve got the… Sustainable Development Goals, SDGs, 2030 agenda… The main theme of these SDGs is leaving no one behind – it has a concept of equality… As a country… how is Malawi [making] sure that persons with disabilities are not left behind in the implementation of the SDGs? As of now… the SDGs are being localised in the Malawi Growth and Development Strategy 3… I remember when… the Head of State was launching the Malawi Growth and Development Strategy, we were invited… to attend the launch itself… There was a symbolic presentation of the first document… There were less than six [institutions]… selected… They had contributed to the development of the document, and… FEDOMA was one of them. (Martin*, Staff, Headquarters)

Disability advocates had the most complete knowledge of relevant international laws and so were critical to the development of national legislation that reflects these international obligations. FEDOMA was an oft relied-upon expert for the Malawian government in a variety of national-scale undertakings. This meant FEDOMA representatives helped draft legislation, testified in front of Parliament, wrote Cabinet papers, and organized national events, as touched upon in the quote above from Martin. FEDOMA also drew on examples from other global actors to make recommendations to the Malawian government. For example, I participated in a FEDOMA drafting session for a position paper on disability representation in Parliament. In developing the report, FEDOMA staff drew on examples from Uganda, Kenya, Zimbabwe, Rwanda and Egypt. Using other countries’ examples was an exercise in cross-scalar, inter-systemic and Afro-centric interaction, which provided insight into the international spaces Malawian advocates considered most relevant to their own national system. All the exemplar countries above had some physical or virtual similarities to Malawi in place and/or social/governance system. Since disability legislation was often the product of popular organizing, if taken far enough one could see the impact of local organizing in a completely different system [for example Kenya’s disability

140  Research handbook on disability policy rights movement] across the scales of Malawi’s system and disability rights movement. This process is part of the scalar politics of disability, which foregrounds disability beyond the individual as a community, national and international phenomenon. FEDOMA’s development of relationships between actors across systems aided in the creation of horizontal networks. Disability as an embodied characteristic impacts all aspects of an individual’s life, making it necessary for advocates to work beyond ‘disability-specific’ spaces; since disability is tied to both physical and social schemas, arguably every space is ‘disability-specific’ (and/or ‘disability-(exclusion)-specific’). These networked organizations can act in solidarity with disability advocates, whether or not disability is a focal point of their current work. To this end, FEDOMA campaigned to encourage ‘disability mainstreaming’ – incorporating a disability rights lens into the work of all social organizations, reminding agents to consider the impact of their work on a population that may not be foregrounded in their minds. As part of this disability mainstreaming work, FEDOMA held panel discussions and formal public events, with a diverse audience of constituents, policymakers and other guests. The media were also invited – local and national television stations, radio stations and newspapers. While I was conducting fieldwork, I attended one of these panel discussions, held in the city of Blantyre. The panel was designed to encourage disability mainstreaming and consisted of representatives from FEDOMA and NGOs that had already committed to this work. High-profile agents with control over a variety of resources and spaces outside Malawi’s disability rights movement thus entered a space governed by FEDOMA and the norms of their movement. At the same time, people with disabilities occupied a space usually associated with normative societal power-brokerage, i.e., a high-spec conference space used for high-level events. These schemas enabled the participation of people with disabilities in social life to a greater extent than the broader schemas of Malawian society. Public and high-profile individuals’ participation in these spaces normalized these more enabling schemas, which encourage agents to amplify the voices of people with disabilities and alter other schemas, beyond FEDOMA-governed spaces. In these spaces, an authoritative collective voice was constituted and transmitted out to the public beyond the disability rights movement. In addition to their physical placement on a level playing field with NGO and funder leadership during panel discussions, disability representatives performed empowered identities through their demeanour. In the event space, FEDOMA representatives performed disabled identities that exuded empowerment and competence. As a result, individuals with disabilities gained status in the space; their expressions of voice were legitimated as knowledge and presented ‘professionally’ (Krumer-Nevo, 2009). As a result, non-disabled delegates may have left with an altered conceptualization of disability from which to act in future. Kesby (2007) raised a concern that participatory spaces can become limited to a particular time–space arena, which fails to ultimately change other spaces. However, engagement in spaces such as those described in this example enabled advocates to alter broader structures through altering how different publics think of people with disabilities. The event itself also became a ‘reference point’ or ‘reference resource’ – a ‘place-transcending’ resource on which advocates draw to reconstitute and legitimate their voices in other spaces. The use of different media to disseminate the message beyond the immediate physical space helped enable time–space convergence and access to a larger audience; just outside the main hall for the example event was a full press room, relaying an audio and video feed to various radio and TV stations. In this scene, not only was person-to-person communication used to relay information from experts to the audience

Decentralization, empowerment and grassroots engagement  141 in the room, but media communication was also engaged to spread the performances of humanized, vocal disability advocacy beyond the confines of the event space. These expanded methods of communication allowed expressions of voice to be amplified and transported into diverse moments and spaces. Just as international legislation provided legitimacy for the work of FEDOMA nationally, high-profile, public expressions of voice from FEDOMA’s centre provided a grounding for the work of grassroots advocates in the districts. Using available communication methods helped to ensure this groundwork reached more peripheral spaces, such as the districts that the DDFs operate within, laying a foundation for local advocates to build upon. High-profile events were a resource to be cited which can be seen by outsiders as legitimate, enabling further work at the grassroots.

PRIORITIZING RIGHTS AT THE GRASSROOTS The particular social and physical geographies of each district impacted its DDF. The extended organizational structure of FEDOMA emphasized embodied, place-based experiences in developing grassroots representation, which in turn were used to prioritize the rights on which a particular DDF focused their organizing efforts. Through my interactions with different district officials, advocates and community members during fieldwork, the importance of socio-physical-environmental geography, economy and social programmes on DDF development became clear. In D4, for example, several years of destruction caused by seasonal flooding led the DDF to focus on Disability Inclusive Disaster Risk Reduction in the affected areas. In D3, however, the land was flat and agricultural. Here, DDF advocates told me their focal points were drought and seasonal famine. D2’s main town and centre of commerce were in a difficult-to-access section of Lake Malawi. Barriers to physically accessing the shoreline prevented many people with disabilities from obtaining employment in local fishing industries. In this example, impairment constrained some individuals from engaging fully with their own place and landscape. While technically this physical limitation could be surmountable (though this is unlikely within the resource constraints of Malawi), it was not seen as such by D2’s DDF members. Instead of focusing on engaging people with disabilities in this aspect of the local economy, D2’s DDF worked to bring about alternative, accessible economic opportunities in the district – such as carpentry or sewing. This DDF also expanded their place-based resources, describing to me how they used a neighbouring district’s more accessible central town for activities such as posting reports. Adaptation to the context in which advocates live was part of developing collectives that could address the specific needs of local constituents, thus in turn developing place-based identities for these local collectives. Nelson (2003, p. 562) found that ‘political vocabularies and identities… became embedded and reworked over time within the nooks and crannies of daily social and political practice’. The examples of DDF foci above represented local collectives adapting over time to the everyday circumstances of their constituents. When faced with exclusion from local spaces, advocates sought inclusion but also developed alternative spaces (and other resources) specifically for their local community. These spaces were part of the work of rights activation and provided important forums for developing grassroots advocacy, constituted through the establishment of a local collective paradoxically tied to a larger organization. This broader connection between grassroots groups and the central organization enabled the critical consciousness needed to imagine alternative possibilities. It also assisted in the practi-

142  Research handbook on disability policy calities of implementing these alternative possibilities – by helping the DDFs to draw funding to local priorities. A FEDOMA manager discussed the role of the DDFs’ priority-setting in FEDOMA’s approach to fundraising: As a district, what is your priority area that you would want to focus [on]? Yes... we might do other things, but say if they choose to do economic empowerment, we do economic empowerment as their first priority. And if we do get any... calls [for proposals], or support, then we know where to redirect that support – the specific district… so that we come up with... best practices for each of the… DDFs. So, our priorities in this case as FEDOMA will not matter much. But what matters is what comes… from our constituents. (Action, Management, Headquarters)

While there were some opportunities for grassroots groups to secure funding for their campaigns, these opportunities were very limited within the financial realities of third-sector funding in low-resource settings. Their aspirations were thus challenged by systemic limitations on human and financial resources. As a result, voice and reference to legislation and large-scale events became increasingly important resources for the advocacy work done by DDFs at the grassroots level, seeking implementation of the rights they prioritized locally.

ACCESSING, ENGAGING AND PERFORMING VOICE IN DIFFERENT SPACES One way to explore the DDFs’ work is through members’ performances of voice within spaces where different (but intersecting) groups exercised structural authority: community members, Traditional Authorities (TAs) and district officials. In their advocacy work, DDF members sought to insert themselves into these spaces in meaningful ways. When DDF agents engaged in the spaces within which each of these groups conducted its activities, they sought the implementation of codified disability rights and good-faith efforts to correct violations of the human rights of people with disabilities. However, advocacy within any specific space also requires an understanding of resources and schemas which can be drawn on from other spaces, emphasizing the generalisability and transferability of resources (Giddens, 1984; Sewell Jr., 1992). In expressing agency within a given local-scale space, DDF members were dependent on the citation of resources performed, instigated or authorized in other spaces. DDF Communication with Community Members DDFs focused on ‘raising awareness’ within their own communities. Building relationships wherever possible in the broader community could encourage the inclusion of people with disabilities in community spaces. Some of the enabling schemas that aided this work stemmed from the participation of people with disabilities in spaces of established social communities, such as churches, schools and college clubs. Advocates demonstrated to their neighbours that they have things in common, which in turn humanized them to these neighbours. DDF members in these cases performed the right to express their voices as equals in these spaces. When people with disabilities were absent or excluded, these normative community spaces could reproduce schemas which further constrained the participation of people with disabilities. Engagement in these spaces required local understanding, highlighting how Haang’andu’s

Decentralization, empowerment and grassroots engagement  143 (2020) calls for an Afro-centric disability studies could help address Kesby’s (2007) concerns with empowerment beyond the enabling confines of empowering spaces. The government of Malawi created legal protections for people with disabilities, providing critical new resources and developing schema that had the legitimacy of state legislation on which advocates drew. However, the government has been slow to provide effective communication about disability rights across the districts. This created both challenges for Malawi’s disability rights movement and opportunities for advocates to disseminate information and ‘control the narrative’. Advocates’ performances of voice acted as conduits through which the virtual structures represented in legislation impacted the material and social experiences of people with disabilities ‘on-the-ground’. Just as FEDOMA ‘empowered’ grassroots members by providing them with information about disability, rights (both national and international) and services, the DDFs continued to spread this information to other people with disabilities and the general public. During interviews, all DDF members reported a level of success in this area. For example, many talked about discussions held with parents of children with disabilities, encouraging them to send their children to school by explaining the rights of children to an education, the illegality of preventing a child from attending school, and the power of an education to make a difference in the life of a child with a disability. Kingsley (DDF Secretary, D1) noted that prior to the DDF’s involvement, ‘Some young children… they were just kept indoors… The parents locked them so that they can’t go to school.’ Similarly, Maurice* (DDF Member, D2) highlighted his DDF’s work on this issue: We have identified a problem… some parents deny their children to go back to school. So we go and discuss with the parents, and we empower and give them the right to know, that this child also has the right to access education. So we help the parents to understand, and they send their children to school.

By engaging with communities on a personal basis, the DDFs saw success in advancing the implementation of certain rights at the grassroots level. In some instances, new spaces were created in order to facilitate participation and communication between disability advocates and communities. I was told about a community sports day arranged for children with disabilities to play with their non-disabled peers. The event was intended to demonstrate the ‘capabilities’ of children perceived as different. All local children were invited; though the activity was run by disability advocates, it was open to everyone and sought the integration of children with disabilities with their peers. This approach enabled disability advocates to demonstrate that they did not want to disrupt or overturn the local way of life but become part of it. Engaging in sporting activities also allowed children with disabilities to display their strengths. Lawy (2017, p. 202) described a similarly performative expression of voice: ‘By using his body... [his] voice was loud and clear.’ Disability advocates performed voice in a variety of ways during this activity – through speeches made to the assembled participants and relayed in the press, signs supporting equality for people with disabilities, and the physical statement made by children with disabilities that they are ‘able’ to play and enjoy sports, as do their non-disabled peers. In demonstrating their sporting abilities, children with disabilities ‘[changed] the terms of the argument or discussion’ (Lawy, 2017, p. 202). Smith, Bundon and Best (2016, p. 140) pointed out in their study of disabled athlete-activist identities that ‘talk is action-oriented’. That conceptualization can be reversed, and actions, in particular the deliberate actions of social justice advocates, can be viewed as ‘talk’ – or expressions of voice. Butler (1999) highlighted the performative as a critical aspect of building and altering

144  Research handbook on disability policy identity in a way reminiscent of the reproduction and alteration of enabling and constraining structures over time, impacting the social position of marginalized people(s). Butler (1999), like Giddens (1984), also noted the importance of temporality in processes of production and reproduction. The DDF’s advocacy activities were impacted by temporal factors. Some cases, such as the sporting example above, relied on temporarily created spaces. At the points in time where a temporary social space existed, miniscule shifts in schemas were made, perhaps weakening the structures that constrain the participation of people with disabilities in social life. However, this temporariness did not lead to the repetitive change required to fundamentally alter schemas, as noted in the concerns of Kesby (2007). Without spaces where people with disabilities could continually engage with non-disabled peers, there may not be lasting change made. That is not to say that temporary spaces did not make any change at all. They retained a virtual existence as a citable resource and in the alterations of structures to which they contribute. Photographing temporary events, describing them in reports (and to visiting researchers), recording them in the newspaper, etc. can help activities in empowering spaces to gain permanence outside of them, lending a material dimension to their enduring virtual existence. The acceptance of people with disability into mainstream community spaces, either temporarily or long term, could in itself be thought of as a disruption of societal norms, making changes to the schemas that constrain their participation. This could also be interpreted as an expression of people with disabilities’ voice – the statement they made is embodied in their physical presence in public spaces. Some of the disability advocates described this process of participating in daily life as ‘humanizing’ people with disabilities, broadening the construction of humanity within those spaces and altering the norm. Superstitions and views of people with disabilities as ‘magic’, ‘cursed’, etc. were challenged by DDF members’ insistence on their own ‘normality’. In these cases, their actions could be interpreted as performances of voice because for the advocates, their ‘normality’ was deliberate. Interviewees described points in their life where they were ‘just staying at home’ (Ireen, DDF Vice Chair, D2). For these individuals, participation in society was a radical act, which they grew in confidence enough to perform only after ‘being empowered’ and becoming advocates. From within these community spaces, in which they participated using physical/embodied expressions of voice, advocates imparted their knowledge about disability issues and rights to the broader public, developed legitimizing resources to be cited by other advocates, and spread the message of inclusion beyond just members of the disability rights movement (DRM). DDF Communication with Traditional Authorities4 and Village Leaders If the new schema, resources and forms of agency that DDFs operationalize were to survive and produce effects in everyday Malawian society, they needed to navigate the tension of working within and challenging the structures and forms of agency that constitute life in Traditional Authorities (TAs). TAs are Malawi’s unit of sub-district governance, which usually consists of an area encompassing several villages, headed by leaders also called Traditional Authorities. Lawy (2017) highlighted the impact of political schemas on marginalized people’s expressions of voice and emphasized the dominance of performativity in ‘acceptable’ forms when both expressing one’s voice and impacting an audience. When the DDFs communicated with Traditional Authorities and village heads, they drew on some of the same legal structures that enabled them in communicating with local community members, by emphasizing that they

Decentralization, empowerment and grassroots engagement  145 were members of the communities that Traditional Authorities lead. The DDFs were able to make these appeals through the use of resources such as government legislation about disability rights. With the Traditional Authorities, there were established rules about participation in the spaces they govern, both in specific meetings and the broader community, and additional structures which both constrained and enabled communication. Respect for (or at least participation with) authority is fundamental in Malawian society and ingrained in its current neopatrimonial governance structures, so DDF members were in some ways constrained by the official way of conducting business – gaining access to the spaces governed by Traditional Authorities was up to the discretion of the leader. DDF members sought formal audiences with Traditional Authorities or village heads, inclusion in community development projects, and invitations to speak at village meetings (Interviews 1–22). Access to these formal spaces and activities was determined by the Traditional Authority’s judgment of the merits of providing access. Advocates I spoke to during fieldwork reported that it was sometimes difficult for an individual advocate to make the initial contacts necessary to communicate with busy local leadership, particularly if that Traditional Authority did not respect the rights of people with disabilities to participate. In those cases, the hierarchical system made it difficult for an advocate to make inroads without seeming disrespectful. However, formal procedures also acted as protection for the DDF members. Following established practice lent legitimacy to advocates and reinforced their expressed desire to work within existing structures. Haang’andu (2020) highlighted the importance of engagement with local leaders for disability rights movements. Enabling legislation and temporary spaces of engagement were not enough – the legislative and network resources generated in these spaces must be citable in other spaces and times. When the DDFs did engage within the Traditional Authorities’ spaces of control, participation was enabled through their ability (both in access to knowledge resources and agency in speaking up) to cite legislation. However, given the disconnect between national enforcement and local realities, the DDFs worked between and across scales, combining resources and challenging and/or accepting particular structural constraints and enablements. This allowed them to constitute new spaces – both physical and metaphorical – transforming existing spaces in ways that provided benefits to the local disability community. The Traditional Authorities are legal entities within Malawi’s governance structure and so are answerable to the national government on certain matters. This included national programmes implemented at a local level – such as the distribution of fertilizer subsidy coupons to local communities. The legal resources created at a national level enabled DDFs to argue for their rights as citizens of Malawi, though the pathways to legal recourse were often unclear and challenging. In these circumstances, the DDFs’ formal knowledge about rights and laws, as a consequence of their training within the organizational space of FEDOMA, included knowledge about the Traditional Authorities’ duty of care. Reports on how the Traditional Authorities understood this duty, and whether they violated national disability rights law, could be passed from the local level to the national organization. The usefulness of this knowledge was, however, dependent on the Traditional Authorities’ understanding that the DDF members possessed that knowledge. Taonga, the Vice Chair of D3’s DDF, pointed out that people with disabilities who had not been ‘empowered’ with knowledge about their rights were left out of programmes like the fertilizer subsidy: There is a problem here in Malawi that they call fertilizer subsidy… They give coupons so they can go and buy the subsidised fertilizer… Sometimes they give [the coupons] to someone who is normal,

146  Research handbook on disability policy [rather] than… give [the coupons] to someone who is maybe blind, because… they have not been empowered.

The impact of expressions of voice by advocates was determined at least in part by the audience, and what the audience believed about the expresser. Lawy (2017) highlighted the difficulty for advocates of working within formal systems and through established forms of ‘acceptable’ communication, which constrain efforts to change the schemas which determine ‘acceptability’ itself. The DDF members contended with this not just in spaces governed by Traditional Authorities but also in those managed by district officials. DDF Communication with District Officials In communications with district officials, respect for authority, insider networks and the law were the primary structural factors which enabled the DDFs to do their work. For monitoring districts’ implementation of disability rights and programming, a ‘professional’ performance of voice was used. The DDF members were often in ‘lower’ status positions than the officials with whom they dealt. This schematic reflection of neopatrimonialism could be both enabling and constraining, depending on whether local advocates engaged in an almost patronage-like relationship with local officials. The DDFs could aid government officials in responding to national legislative priorities and delivering a politically supportive interest group if officials were willing to work with them. FEDOMA’s reputation as an organization, coupled with advocates’ extensive knowledge, aided them in representing their voice(s) in these more formal spaces. However, these were also the hierarchical schemas that advocates were trying to alter – so their approach was not to adhere to schemas around social position quite as strictly. Their stories in this case were meant to be equalizers. This was made clear across all the meetings between DDF members and district officials that I observed. In formal settings, the DDFs presented themselves as the experts – arguably more knowledgeable than the officials with whom they were speaking. Their voices were expressed in ways that underscored their expertise. At the same time, adherence to social mores such as using an official’s title, deferring to them as a leader, etc. reinforced the socioeconomic hierarchy and removed any threat the DDF members might have seemed to pose to that official’s position. This engendered a more receptive space, which ultimately impacted whether the DDF would be able to build a functioning, continuous relationship. This notion of status was especially complicated in cases where the DDF advocate had a well-respected job, for example as a teacher. In these cases, hierarchical structures blurred and the consideration of those hierarchies depended largely upon the space, point in time, and audience. One of the best examples of this blurring of hierarchy and use of insider networks was in the DDFs’ work toward securing accessible education. All of the DDFs I spoke with had at least one member who was a teacher. Teachers were ‘insiders’ within district education spaces, more easily able to navigate the internal workings of education departments. They were considered well educated and respectable. Englehart and Miller (2019) held that this type of multi-positionality is what constituted successful critical actors, individuals who were well positioned to alter specific structures. Many of the gains in inclusive education DDF members discussed involved these well-placed critical agents: We are also able to fight for the rights of children with disabilities… especially… education-wise. Previously, it was very tough for a person with a disability to be selected to go to a national or district

Decentralization, empowerment and grassroots engagement  147 secondary school. But… since the DDF was established, we are able to fight – going to the DEM [District Education Manager], and we are also linking with the desk officer for special needs here in [D1], saying ‘This learner… [has] been in Standard 8 for maybe 2 years, 3 years’… I am a teacher, that’s why I can… go in. So, we are able to discuss, and they say ‘Yes’... [If] a learner of disability, any type of disability, gets a pass… they are able to be considered to a boarding school for security… and for a good environment for them to learn. (Mallory*, DDF Chair, D1)

The DDFs used their existing access to governance spaces to open the door to communications about disability rights. These communications were reinforced by framing against national laws. Their ability to make progress was still to some extent affected by their audience, however, as district officials may or may not have believed in the DDF’s ability to garner support for actual enforcement from the national government. Along with utilizing insider networks to navigate dealing with district officials, the DDFs conformed to social norms such as being punctual, respectful and knowledgeable of the ‘proper channels’, to help them push their agenda forward. This included knowing how to shift the system instead of trying to topple it. They used the tactic of pushing to increase the inclusivity of existing services and programmes, instead of pushing for additional, special provisions for disability. Through presenting as a group who knew their rights and were willing to agitate for them, the DDF members altered schemas which constrained their access to services and the implementation of laws protecting their rights. Charles (DDF Treasurer, D4) put it this way: We have tried to actually… avoid budgetary issues. Extra budget issues just for disability. We are saying the same budget should be inclusive… If you look at all these ministries, we have not campaigned for any other budget. But we are saying – ‘That’s a budget. Let us make it inclusive.’

In Charles’ example, he established his expertise by communicating that he had knowledge of the budgets allocated to various programmes. However, he also refrained from framing people with disabilities as needing separate funding. Instead, he focused on officials’ duty of care to include marginalized people in existing funds for community programming. At the same time, he demonstrated awareness that officials are themselves constrained, in this case by a lack of financial resources. Reflections of the DDFs’ approaches to community communication, which strived for the inclusion of people with disabilities in the ‘normal’, were reflected in this formal argument for economic inclusion. In Malawi, there are few resources to go around. Disability advocates realized they may not be successful in convincing non-disabled community members to support their efforts if they were asking for something ‘special’ in a space where no one has enough. In this case, context was an important consideration for setting an agenda, reflecting Haang’andu’s (2020) emphasis on place-specificity in building DRMs.

CONCLUSION: MULTI-SCALAR, RELATIONAL PROCESSES OF ACTIVISM FOR RIGHTS ACTIVATION IN LOW(FINANCIAL)-RESOURCE SETTINGS FEDOMA, its headquarters staff and managers, and its grassroots advocates continue to work toward the actualization and implementation of the rights codified in the 2012 Disability Act and UNCRPD, even as Malawi’s Parliament considers the 2019 Persons with Disabilities Bill, which would combine and update previous national legislation. This proposed legislation, plus

148  Research handbook on disability policy the 2018 launch of a National Disability Mainstreaming Strategy, indicates that grassroots organizing could maintain attention on and platforming of disability rights issues at local and national levels. Exploring how Malawian disability advocates engage in processes of rights activation and implementation at the district level continues to be important, and their strategies adaptable and relevant, to this and any other future legislation. During my fieldwork, I experienced how, through performances of voice, Malawian disability rights advocates circulated new schematic conceptualizations of disability and human rights, forming the driving force between the implementation of legislative promises to date. This work helped to connect people with disabilities, developed strategies and resources for advocacy, and emphasized the power of DPOs joining together within local contexts to support one another in accessing human rights. Government representatives also learned about disability rights during these interactions, developing an understanding of local disability populations, their needs, and their political will and power. Key to organizing in low-resource contexts, where the majority of the world’s people with disabilities live, is the development of cross-scalar, ‘reference’ resources, including both local and high-profile actions and events, and how these can be used to access, engage and perform voice within different spaces. Considering space, place and time highlights the strengths and challenges of this approach, emphasizing structural constraints as fluid, dynamic, temporal and place-specific. Malawian disability advocates used their voices and knowledge resources to engage and combat these constraints, often using structural constraints to their advantage. This approach challenged some more ‘radical’ Western paradigms of rights activation but emphasized the power of understanding place and building different paradigms of disability rights organizing, moving beyond judgment toward contextual understandings. FEDOMA is one part of one country’s disability rights movement, but its work is connected to the struggle for disability human rights globally, and so the lessons learned within this context form part of a global network of resources for organizing. The processes explored in this chapter could be studied within other types of activist/advocacy organizations, social movements and/or majority-world contexts. This would provide opportunities to explore to what extent similar types of structures and imaginaries are used in various settings, as well as discover differences. Further study could contribute a broader understanding of ways to ‘do’ activism (especially in low-resource contexts). Understanding disability rights movements in majority-world contexts is critical for the continued progression of a global disability studies that is evolving, inclusive and contextually aware. Increasing the emphasis on these aspects of disability activism can also broaden the study of disability in minority-world settings, contributing to calls for intersectional justice, the continued evolution beyond rigid models of disability, and the expansion of conceptualizations of disability and inclusion.

NOTES 1. 2.

Start of endnote. Person-first language is preferred by the Malawian disability rights advocates whose work is discussed in this chapter. End of endnote. Start of endnote. ILO Convention Nos. 100, 111, 159; UN Standard Rules for the Equalization of Opportunities for Persons with Disabilities. End of endnote.

Decentralization, empowerment and grassroots engagement  149 3. 4.

Start of endnote. I acknowledge that global/national factors influence/are influenced by local activ-i ism. For the purposes of this chapter, I confine my exploration of this broader complexity to the role of international legislation. End of endnote. Start of endnote. ‘Traditional Authority/ies’ refers to both a person and a place. For this chapter: ‘Traditional Authorities’ = person and ‘TAs’ = place. End of endnote.

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12. From enabling access to enabling rights: Singapore’s practical approach to disability policy Daryl W.J. Yang, Kuansong Victor Zhuang, Gerard Goggin and Meng Ee Wong

Sometime in November 2012, guide dog user Cassandra Chiu was shopping with her daughter at a popular global clothing chain. As Chiu headed to the changing room to try on a pair of pants, she was stopped by multiple employees of the store who asked her to leave because dogs were not allowed in the store. After more than 20 minutes of argument, another staff member from the store clarified that guide dogs were in fact allowed. Chiu subsequently posted on Facebook about the experience, which went viral and was reported in the national newspaper, The Straits Times (Lin, 2012). This would not be the only incident guide dog users in Singapore face accessing public spaces with their guide dogs (Kek, 2015), most recently with Paralympic swimmer Sophie Soon being refused entry to a popular fast food chain because of her guide dog in August 2020 (Lam, 2020). Unlike other jurisdictions like Australia where the federal Disability Discrimination Act guarantees access for all assistance dogs in public places, Singapore has not enacted any legislation to prohibit the exclusion and discrimination that guide dog users face. Instead, exceptions were made under existing regulations to allow guide dogs to be brought into spaces such as the rapid transit system and food establishments where live animals are otherwise not allowed. In 2013, Minister of Law K Shanmugam called for a ‘supportive regulatory framework’ to support guide dog users in terms of the recognition and licensing of guide dogs. This contrasts with disability advocacy group Disabled People’s Association’s (DPA) call for the enactment of anti-discrimination legislation that would impose ‘hefty penalties to deter violations’ of the right of guide dog users to enter public spaces (Yap, 2013a). However, to date, this suggestion has not been taken up. This brief account of guide dog users and the absence of an enforceable right to access speaks to Singapore’s disavowal of a rights-based approach towards disability policy in favour of a focus on inclusion (Zhuang, 2016). While the human rights model has become increasingly dominant in discourses on disability policy following the adoption of the UN Convention on the Rights of Persons with Disabilities (CRPD), Singapore’s experience offers a counterfactual approach to disability policy that has largely developed independently of the human rights paradigm. Just as the UN General Assembly negotiated and adopted the CRPD in 2006, Singapore was developing the 1st Enabling Masterplan (EM) to chart the development of programmes and services in the disability sector. Informed by Prime Minister Lee Hsien Loong’s vision to build an inclusive society when he took office, this policy roadmap has guided Singapore towards developing a barrier-free city that is accessible to disabled people and the implementation of policies to support the education and employment of disabled people (Wong & Wong, 2015). Yet, while it was published in 2007, the EM made 151

152  Research handbook on disability policy no substantive reference to the CRPD and neither have its subsequent iterations published in 2012, 2017 and 2022 respectively.

SINGAPORE’S ACCESS-TO-INCLUSION APPROACH TO DISABILITY POLICY This chapter charts what we describe as Singapore’s access-based approach to disability policy which contrasts with the prevailing rights-based approach that is also often referred to as the ‘human rights model’ of disability policy first coined by Quinn and Degener (2002). In their words, the human rights model ‘focuses on the inherent dignity of the human being and subsequently, but only if necessary, on the person’s medical characteristics. It places the individual center stage in all decisions affecting him/her and, most importantly, locates the main “problem” outside the person and in society’ (Quinn & Degener, 2002, p. 13). The human rights model builds upon the social model of disability, which conceives of disability as a form of social oppression that is located outside of the individual (Oliver, 1996). In contrast to both the human rights and social model’s focus on eliminating barriers that restrict disabled people from full participation in society, we argue that Singapore’s ‘access-to-inclusion’ approach focuses on practical pathways for disabled people to gain access to different social spheres. However, this should not be confused with the ‘right to access’ enshrined under the CRPD. A right connotes enforceability; however, disabled people in Singapore do not possess any enforceable legal right that would allow them to demand access. As we will demonstrate, the focus on ‘access to inclusion’ is not founded on the notion of rights but a pragmatic set of considerations, such as economic cost and cost efficiency. Since the adoption of the CRPD, the human rights model has come to be understood as the roadmap for disability policy. This is consistent with Offord’s (2006, p. 13) observation that ‘principles of human rights have become ubiquitous to any consideration of national and international governance, and… has triumphed as a universally accepted moral imperative and language’. Offord (2006, p. 14, emphasis in original) also highlights the importance of activating human rights by ‘both the need to contextually think human rights as well as the responsibility to speak to human rights’, paying attention to the everyday context by which human rights are negotiated and used. By attending to Singapore’s experience with disability policy, we present a challenge to the hegemony of the human rights model and further the scholarship on what its contributions and limitations are in the pursuit of social justice for disabled people across transnational contexts (Chouinard, 2018; Meekosha & Soldatic, 2011; Onazi, 2020), while considering how such rights can be activated in Singapore’s context. In particular, as Chouinard (2018, p. 5) observed, ‘an exclusive focus on human rights can encourage exaggerated confidence in the power of law alone to improve disabled people’s lives since it fails to explicitly critique the uneven geography of access to the resources needed to realize such rights.’ Singapore’s experience thus presents an opportunity to consider how disability policy can and should develop against this backdrop. Despite Singapore’s intersections with global flows around disability rights (Zhuang, 2016), disability policy has developed in a different trajectory through its ‘access-to-inclusion’ model of disability policy. As articulated in the vision of the First EM (Ministry of Social and Family Development, 2007, p. iv), the aim is for Singapore to be ‘an inclusive society where [disabled people] are given the opportunity [emphasis added] to

From enabling access to enabling rights  153 become equal, integral and contributing members of society’. While the CRPD and the human rights model are concerned with the elimination of the barriers that hinder the full participation and equality of disabled people in society (often through legislative means), Singapore’s focus on access to inclusion lends itself to the enactment of metaphorical bridges in the form of policy measures aimed at enabling disabled people to enter into and access different spheres in society. Similar to the approach towards guide dog users as described earlier, Singapore has implemented incentive mechanisms to encourage employers to hire disabled people and promulgated non-binding guidelines in facilitating digital access. This chapter demonstrates the need to move beyond a strictly legal approach towards disability rights, which requires the state to not only recognize these rights but also ensure that they can be activated in society. Traditionally, human rights scholars and practitioners have focused on the enforcement of rights as the primary mechanism by which human rights are given effect. Under this framework, Singapore performs poorly because the rights of disabled people under the CRPD are not enshrined in law and there is almost no avenue for recourse for a person whose rights have been violated. Nevertheless, Singapore has made significant strides in improving physical and digital accessibility and introduced policies and programmes to expand opportunities in employment and education for disabled people. In terms of the CRPD, we suggest that even though Singapore is not motivated by international law, its focus on enabling access to foster the inclusion of disabled people in society accords with its obligations under Article 9 of the CRPD, which imposes on states an overarching duty to ‘remov[e] barriers to ensure equal access [emphasis added] for disabled people to, among other things, built environments, goods and services, and facilities’ (Broderick, 2020, p. 393). Singapore’s experience therefore highlights the need for states not only to give effect to the rights of disabled people through the law but also to enact policies and programmes to foster an environment in which those rights can be exercised and enjoyed in a meaningful way (Degener, 2016). In attending to Singapore’s approach towards the practical realization of rights, we also build on the discussion on access by disability studies scholars, not simply as the means towards physical entry into buildings and around the world, but also in and across different spheres in society, such as economic markets and leisure (Williamson, 2015). At the same time, Singapore’s approach is marked by a ‘pervasive reliance on the individual model of disability’ which restricts the choice and control of disabled people in disability services (Zhuang, 2016, p. 634). The limitations of Singapore’s ‘access-to-inclusion’ model of disability policy thus demonstrates the unique contributions that the human rights model offers in demanding a paradigmatic shift towards the social model of disability which centres disabled people in the policymaking and monitoring process. The significance of the human rights model can also be gleaned from policy reforms that the Singapore state passed in order to comply with its obligations under the CRPD both prior to and after ratification in 2013. Yet, the CRPD has arguably had little impact in Singapore in other areas such as employment and disability representation. We suggest that this flows from Singapore’s reluctance to enshrine the rights of disabled people in law, which circumscribes the transformative potential of the CRPD to engender a paradigmatic shift from the individual model of disability to the social model of disability. Under the ‘access-to-inclusion’ framework, disabled people remain dependent on existing notions of rights in society, which has implications on their ability to access their ‘proper’ place in society and what this ‘proper’ place entails. The limitation of Singapore’s approach demonstrates the importance of the human rights model of disability, which fashions disabled people as rights-holders whose exclusion is the

154  Research handbook on disability policy result of the violation of their rights by physical, social and institutional restrictions imposed on them. Because the enablement of access is concerned mainly with the investment of resources to allow disabled people to participate in society on an equal basis rather than the vindication of their right to do so, it runs the risk of perpetuating and reinforcing the individual model of disability and the treatment of disabled people as objects of charity and welfare. The absence of any legal mechanism by which disabled people can enforce their rights severely limits their ability to fully enjoy the rights enunciated in the CRPD. Singapore’s engagement with disability rights thus lends support to Broderick’s (2020) argument that Article 9 of the CRPD cannot stop only at imposing positive obligations on states to enable access but must also afford citizens the concomitant right to enforce not only their right to accessibility but also the full suite of rights under the CRPD. Notably, the CRPD is only the third of four UN human rights treaties that Singapore has acceded to, all of which are group-specific treaties.1 Singapore has not signed on to the two foundational treaties contained in the International Bill of Human Rights, namely the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social and Cultural Rights. As the CRPD primarily affirms the existing fundamental rights recognized under these two Covenants rather than creates new ones (Mégret, 2008), the Singapore case also raises important questions as to the efficacy of these subsequent group-specific treaties that focus on affirming the disabled person’s ‘right to have rights’ when the rights in question may not already be available to non-disabled people in Singapore. Singapore’s experience with disability rights thus offers insight into how the CRPD may be implemented in ways different from what was initially conceptualized, especially given how the Western liberal conception of human rights has not been embraced by the Singapore state (Thio, 2009). In doing so, we situate our work amongst the growing presence of scholars devoted to the critical study of disability in Singapore (Chua, 2019; Goggin & Zhuang, forthcoming; Holden, 2020; Lee, Mathews, Wong, & Zhuang, 2017; Wong, Low, & Appelhans, 2017a; Wong, Ng, Lor, & Wong, 2017b; Wong & Wong, 2015; Zhuang, 2016, 2020, 2021) and add to it by illuminating how Singapore’s engagement with disability rights is informed by the ‘access-to-inclusion’ model of disability policy. Further, in discussing how Singapore’s model interacts with its pragmatic approach towards human rights, we converge with studies around human rights in Singapore (Cheng, 2004; Chua, 2014; Thio, 2009), which highlight that this pragmatic approach is based on calculated political and economic considerations, rather than a wholehearted embrace of the individualist conception of human rights. In conceptualizing Singapore’s ‘access-to-inclusion’ approach to disability policy, we reviewed and analyzed a diversity of sources, including policy documents, news reports, parliamentary debates and statutory instruments, to identify the ideological underpinnings of laws and policies that the Government has enacted. We begin the chapter by first contextualizing Singapore’s ratification of the CRPD and its ‘access-to-inclusion’ model. We then discuss three case studies to show how Singapore has enabled access notwithstanding the absence of disability rights legislation, before concluding with our thoughts on how disability rights can be activated in Singapore as the next step towards enabling access to inclusion.

From enabling access to enabling rights  155

SINGAPORE’S RATIFICATION OF THE CRPD Though it is the richest and most developed country in Southeast Asia, Singapore was the last in the region to accede to the CRPD on 30 November 2012. When pressed on this delay, Prime Minister Lee Hsien Loong explained that ‘it’s easy to sign documents… [b]ut it’s what you do in real life, which is the important thing’ (Wong, 2012). Though the CRPD was adopted in December 2007, it did not receive much attention in Singapore until 2011. During the First Cycle of Singapore’s Universal Periodic Review (UPR) in 2011, Singapore declared its intention to ratify the CRPD after clarifying its approach towards the accession of human rights treaties. The lead delegate noted that Singapore is concerned with the full and effective implementation of its treaty obligations and would only sign on to a treaty when it is confident of implementing it. He further emphasized that just because Singapore is not party to a treaty does not mean that its policies are not already largely in compliance with its provisions (see also Shanmugam, 2014). Singapore’s stance towards the signing of the CRPD reveals its pragmatic ‘access-toinclusion’ approach towards disability policy. Indeed, Singapore took steps prior to signing on to the CRPD to ensure that its laws were consistent with its obligations. One key example is the changes made to the Voluntary Sterilization Act (Cap. 347, Rev Ed. 1985) (VSA). In October 2012, the Government removed provisions in the VSA that would have fallen foul of the CRPD. Prior to the amendments, the VSA stated that the spouse, parent or guardian of a person ‘who is married and is afflicted with any hereditary form of illness that is recurrent, mental illness, mental deficiency or epilepsy’ may consent on their behalf to undergo treatment for sexual sterilization. This is in violation of the right to physical and mental integrity under Article 17 of the CRPD. In moving the amendments, the Minister for Health Gan Kim Yong (Gan, 2012) explained in Parliament that the amendment would bring Singaporean law ‘in line with the [CRPD] to accord persons with hereditary illnesses or mental disabilities with the same legal rights as others. This will then enable Singapore to accede to the [CRPD]… by the end of this year.’ Singapore’s ‘access-to-inclusion’ approach towards disability policy can also be gleaned from its launch of the EMs, a series of five-year roadmaps that chart the steps needed towards a more inclusive society. First launched in 2007, the masterplans heralded the commitment of the Government towards real changes in society and reflects a longer commitment towards inclusion first evident in the late 1980s (Zhuang, 2010). In developing the EMs, the Government also adopted a ground-up approach to garner feedback and recommendations from disabled people, their families and caregivers as well as disability service organizations. While these steps are largely consistent with the obligations under Article 33 of the CRPD to develop a coordination mechanism for the implementation of the CRPD, it does not appear that the Government had consciously done so with reference to the CRPD or to comply with its provisions. Singapore has thus taken on a different approach from the rights-based model envisioned by the CRPD despite the initial parallels and confluence of Singapore with global moments of disability rights, specifically the founding of the international disability rights movement in Singapore in 1981 and the signing of the CRPD. The year 1981 offers a keen contrast, given the founding of Disabled People’s International and the election of a Singaporean, Ron Chandran Dudley, as its first chairperson (Zhuang, 2010). Thus, while then Deputy Prime Minister Goh Chok Tong acknowledged that ‘disabled people should have the same right as

156  Research handbook on disability policy normal people to take their proper place in society and to live as independently as possible’ (Advisory Council on the Disabled, 1988, emphasis added), disability rights have been largely absent in public discourse. As Zhuang (2020) explains, disabled people in Singapore, while initially adopting the language of the social model and disability rights in the 1980s, increasingly turned towards an embrace of able-nationalism as they prioritized economic incorporation as the means towards citizenship. Similarly, Wong et al. (2017b) highlight the importance of the 1980s in the adoption of disability rights and the social model in Singapore; however, they note the difficulty of adopting disability rights in a landscape that privileges economic growth for national survival, and changes in recent years have also been driven by a calculated pragmatism. Wong et al. (2017a) have also pointed out the lack of advocacy and activism in Singapore today, calling for disabled people and their organizations to play a greater role in shaping disability policy in light of the ratification of the CRPD. This context can be gleaned from responses by civil society actors after the Government’s decision to accede to the CRPD, where only a few groups lobbied for policy change and legal reform to realize the rights of disabled people. Specifically, local human rights organization MARUAH jointly organized two public consultations with DPA, a Singaporean cross-disability advocacy organization that began as an ad hoc group after Disabled People’s International was founded. A position paper was prepared and submitted to relevant state agencies in December 2012 setting out various recommendations and areas for reform, such as the inclusion of children with disabilities under the Compulsory Education Act (Cap. 51, Rev Ed. 2001) and the enactment of anti-discrimination legislation to address the low employment rate of disabled people. The position paper also called for the ratification of the Optional Protocol ‘in the interests of greater accountability’, by allowing individuals and groups in Singapore to submit communications to highlight violations of the CRPD to the Committee of the Convention on the Rights of Persons with Disabilities (CRPD Committee) (MARUAH & Disabled People’s Association Singapore, 2012). Beyond this initiative by MARUAH and DPA, AWARE Singapore – a gender equality advocacy group – also participated in a public consultation by the Ministry of Health on amendments to the Voluntary Sterilization Act and successfully campaigned for the requirement to obtain a court order before a person without mental capacity can be subject to sexual sterilization. However, apart from these efforts, there was no concerted attempt by organizations of or for disabled people to lobby the Government as it prepared to accede to the CRPD. Singapore ratified the CRPD on 18 July 2013 with three minor reservations, which have remained to date. First, Singapore placed a reservation on Article 12(4), which obliges the state to regularly review decisions made on behalf of disabled people, on the basis that there are existing safeguards in the Mental Capacity Act (Cap. 177A, Rev Ed. 2010). Second, a reservation was placed against Article 25(e) which mandates the prohibition of discrimination against disabled people in the provision of health insurance. In its initial state report to the CRPD (Government of Singapore, 2016), this was justified on the basis that Singapore does not interfere with the commercial underwriting decisions of private insurers or mandate the coverage of disabled people. However, the Government has indicated its intention to withdraw this reservation after developing guidelines that would prohibit insurers from treating disabled people differently unless such differential treatment can be justified (Wang & Lim, 2020). The third reservation relates to Article 29(a)(iii), which requires that disabled electors be allowed assistance in voting by a person of their own choice.

From enabling access to enabling rights  157 As Singapore adopts a dualist approach to international law, the rights enshrined under the CRPD are not binding until they are incorporated by the enactment of domestic legislation. To date, Singapore has not enacted any law that allows disabled people to enforce their rights under the CRPD such as the right to equality or the right to reasonable accommodation. However, following the ratification of the CRPD in 2013, government agencies took steps in accordance with the state’s obligations under Article 8 of the CRPD to raise awareness on disability and promote the rights of disabled people. The National Council of Social Service launched multiple guidebooks and campaigns to raise awareness about the CRPD (Government of Singapore, 2016). Yet, the effect of the CRPD on other policy reforms is less clear. For example, in November 2016, the Ministry of Education appointed an advisory panel to review the exclusion of children with disabilities from compulsory primary education after this was first proposed in the Second EM (Ministry of Social and Family Development, 2011). While the panel recommended that compulsory education should be extended to all children regardless of disability, it did not make any reference to the CRPD. The Third EM (Ministry of Social and Family Development, 2017) also made no direct reference to the CRPD except a brief note that the strategies outlined in the document would ‘complement’ the progressive realization of Singapore’s obligations under the CRPD.

ENABLING ACCESS: SINGAPORE’S PRAGMATIC APPROACH TO DISABILITY RIGHTS In this section, we discuss Singapore’s ‘access-to-inclusion’ approach towards disability policy and the relatively absent role of rights in relation to three different spaces: physical accessibility, digital accessibility and employment. We highlight distinct features of Singapore’s approach to disability policy, which does not emanate from the enforcement of rights but careful calculations as to the cost and benefit of its policies and aims at the enablement of access so that disabled people can enter and participate in different spheres of society. The Making of Physical Accessibility in Singapore Central to the discussion of Singapore’s approach of enabling access are the changes to address the inaccessibility of the country’s metro system – known as the Mass Rapid Transport (MRT) – launched in 1987. As we explained earlier, 1981 reflected a shift in how disability was thought about in Singapore. Disabled people began to advocate for their inclusion in society and for equal access and opportunity in various areas, such as in education, physical accessibility and employment. Zhuang (2020) highlights a key contestation occurring over the accessibility of the MRT before its launch. As he points out, disabled people advocated for the metro to be accessible, using the language of the social model and disability rights. However, this was to be of no avail as state agencies explained away their concerns by raising safety considerations. In brief, this episode demonstrates how the state’s approach towards disability was born out of paternalistic concerns and cost efficiency. While 1987 marked the metro’s inaccessibility when it was launched, the subsequent Advisory Council on the Disabled, the first extensive state-led masterplan that sought to highlight ways to integrate disabled people into society, was set up in 1988 and called for a mandatory accessibility code. The Council noted how improving the accessibility of the built

158  Research handbook on disability policy environment would benefit not only disabled people, but also the elderly, pregnant women, and those with ‘mild but common medical disabilities such as knee arthritis’ (Advisory Council on the Disabled, 1988, p. 59). It further added that legislating accessibility ‘should not significantly increase costs or development problems during implementation’ (Advisory Council on the Disabled, 1988, p. 62). While this led to the enactment of the Code on Barrier-Free Accessibility in Buildings (Accessibility Code) in 1990, the eventual achievement of the metro’s accessibility for wheelchair users took another decade: it was only in 1999 that the Government decided to retrofit the metro for access. In announcing this, the then Minister for National Development noted that it was to make the MRT ‘accessible to the growing numbers of old and frail commuters’ (Chua, 1999), rather than to give effect to the rights of disabled people to use the public transport system on an equal basis. This case demonstrates how while it was disabled people’s activism that initially called attention to the need for accessibility, the decision to enact what is now the Accessibility Code was not based upon rights, but rather practical concerns. Access arrived because of policy and cost calculations, rather than the enforcement of rights. Further, the Accessibility Code only applied to new buildings and not existing buildings. Given the significant cost involved in upgrading existing buildings to meet accessibility requirements, a S$40 million Accessibility Fund was set up in 2007 to incentivize building owners to undertake upgrading projects to provide basic accessibility features. This speaks to the Government’s sensitivity to commercial considerations and its use of incentives rather than legislation to build a more accessible Singapore. In relation to public spaces, the Public Sector Buildings Upgrading Programme was launched in 2006 and has resulted in almost universal accessibility in most public buildings and facilities, including hospitals, government offices and public transport terminals. However, there are still gaps in implementation as some older buildings are still not accessible (Ong, 2019). Digital Accessibility in a Smart Nation Turning to more recent developments, the digitization of Singapore has gained speed in the last decade, with plans envisioning a nation enabled by technology enacted by the state. As Goggin and Zhuang (2022) highlight, disability is a key concern shaping Singapore’s plans for digitization, with accompanying plans highlighting the need to design (digitally) for accessibility. The embrace of digital technology in Singapore is underpinned by economic concerns, to remain relevant in an increasingly digitized global economy. As the Smart Nation plans highlight, the embrace of technology reflects the pervasiveness of the digital; digitization thus allows Singapore to stay ahead of the curve and to ‘continue to prosper and stay relevant’ (Smart Nation and Digital Government Office, 2018, p. 3). The state’s embrace of disability in the Digital Readiness Blueprint introduced by the Ministry of Communications and Information and the Digital Services Standards introduced by GovTech highlights the ways by which digital inclusion is to be tackled by the public sector. In particular, the Blueprint lays out some 59 standards that government digital services must abide by (GovTech, 2018). Government agencies must meet a minimum level of access and provide for all members in society who transact digitally, including disabled people. Like physical accessibility, the focus on web accessibility appears to also be driven by concerns with an ageing population. For instance, in 2016, the Government launched the SS 618 Guidelines on User Interface Design for Older Adults, which is aimed at encouraging

From enabling access to enabling rights  159 active ageing among older adults and promotes Singapore as an age-inclusive society (Spring Singapore, 2017). However, while government agencies must meet minimum standards of digital access in accordance with the Web Content Accessibility Guidelines (WCAG) 2.0, Singapore has not gone so far as to demand that all of society must do the same. Private businesses, non-governmental organizations and other website owners are not obliged to comply with the WCAG 2.0 and there has not been any effort to encourage website developers to consider accessibility issues. Notably, while GovTech – Singapore’s digital services agency – has developed a web accessibility testing tool, it was targeted specifically at software developers working on Government e-services (GovTech, 2020). Moreover, though the Government has committed itself to complying with the WCAG 2.0, this is not enshrined in law. There is no avenue by which disabled persons can enforce this commitment and hold the Government to its word beyond informally writing to the relevant government body to highlight that a website is not compliant. Similar to its approach to web accessibility, Singapore has not mandated the universal provision of captioning and sign language interpretation on traditional media like television programmes despite repeated requests from D/deaf and hard-of-hearing people (Sivalingam, 2020; Yap, 2013b). Subtitles were introduced on important broadcasts, such as the daily news bulletins, and live signing is provided for in key government communications, including ministerial statements and a series of national broadcasts on the COVID-19 pandemic (Bhatia, 2020). In response to demands to mandate sign language or live captioning, government authorities have often responded by highlighting the logistical challenges in doing so (Ho, 2013). The lack of universal provision reflects the limitations of Singapore’s approach towards physical and digital accessibility, one based not upon enforceable rights but rather on goodwill and voluntary compliance, especially from private businesses. The ‘Business Case’ for Disability Inclusion in the Workplace The absence of rights is made clearer in the case of disability employment. According to the 2019 Comprehensive Labour Force Survey by the Ministry of Manpower (MOM) (Timah, 2019), less than 30 per cent of disabled residents between the ages of 15 and 64 were employed, as compared to 68 per cent for the general population (Manpower Research and Statistics Department (MSRD) of Ministry of Manpower (MOM), 2021). This low employment rate can be partly attributed to ableist and discriminatory attitudes at the workplace. A 2018 report published by DPA on the discrimination faced by disabled people at the workplace reported cases of ‘blatant discrimination or outright exploitation’ as well as ‘paternalistic or patronising behaviour’ (Disabled People’s Association Singapore & Institute of Policy Studies, 2018). In response to a 2018 public consultation on the review of the Employment Act (Cap. 91, Rev Ed. 2009), DPA partnered with AWARE Singapore to contribute a joint submission which called for the enactment of anti-discrimination legislation. The groups cited Article 27 of the CRPD – which obliges states to ‘take appropriate steps to prohibit discrimination on the basis of disability throughout recruitment, hiring, career advancement and redress of grievances’ – in their submission. They highlighted how the Government’s non-legislative approach ‘does not allow it to properly address’ its obligations under the CRPD (AWARE Singapore & Disabled People’s Association Singapore, 2018). Under the Employment Act, the only instance where discrimination is legislatively prohibited is wrongful dismissal based

160  Research handbook on disability policy on age, gender, disability or some other characteristic. As a matter of policy, the MOM may impose administrative penalties on employers that practise discriminatory hiring to prohibit them from obtaining work passes to hire foreign employees; however, as this policy was mainly enacted to address the preferential hiring of foreigners, its effectiveness in relation to disability discrimination is unclear. Until August 2021, the Government resisted calls to outlaw employment discrimination explaining that its focus on expanding employment opportunities and skills development has led to improvements (Lee, 2020). This includes the Open Door Programme, which was launched in 2014 to increase the employability of disabled people and support employers in hiring them. It also provides funding to employers to subsidize the cost incurred to recruit, train and provide accommodations to their disabled employees. In April 2021, the Government announced the establishment of ‘Enabling Business Hubs’ around the country to provide training and employment, shared facilities, and services such as job coaching for disabled people and employers (Goh, 2021). As with its approach towards accessibility, Singapore’s approach towards the employment of disabled people is not so much about affirming rights so as to eliminate the discriminatory attitudes that prevent disabled people from being hired or promoted in the workplace. Rather, the Singapore state has focused on enabling disabled people to be employed through incentive structures that encourage employers to hire disabled people. This approach is perhaps well captured in the Enabling Employment Pledge that was launched in 2020 by Singapore’s President Halimab Yacob, who explained that she wanted to ‘encourage more employers to take the first step and open their doors to persons with disabilities’ (President’s Challenge, 2020). The employment of disabled people, just like their ability to access physical and digital space, is yet again up to the goodwill of employers and the financial support of the state. However, as Lee et al. (2017) note, this ‘business case’ of inclusion is insufficient and the ‘moral case’ – as enshrined in enforceable statutory recourse against discrimination – has been neglected in Singapore. At the time of publication, though the Singapore government has announced its plan to legislate against workplace discrimination, it does not appear that the new law will prohibit indirect discrimination or the denial of reasonable accommodation, which would severely limit the law’s ability to address discrimination against disabled workers.

ENABLING RIGHTS AS AN EXTENSION OF ENABLING ACCESS This chapter has demonstrated that the Singaporean approach focuses not on the enforcement of rights but on enabling access. While this approach has undoubtedly led to tangible positive outcomes in terms of fostering the inclusion of disabled people in different spheres of life, the reluctance to entrench disability rights in law has limited the transformative potential of the CRPD. Conceptually, it also demonstrates the interplay between rights and obligations in ongoing debates surrounding the content of the CRPD, which not only recognizes the rights of disabled people but also imposes obligations on states to give effect to those rights (Broderick, 2020). The human rights model is unique in its demand for the paradigmatic shift in attitudes towards disability and the elimination of barriers in addition to the enablement of access. In particular, we have highlighted the issues within these case studies where much more can be done. Ultimately, notwithstanding the many positive outcomes Singapore’s approach has

From enabling access to enabling rights  161 achieved, this focus on enabling access is insufficient to fully realize and activate the rights of disabled people. In this final section, we turn to the issue of disabled self-representation to illustrate this. The principle of self-representation as encapsulated in the slogan ‘nothing about us without us’ has largely gone unrecognized in Singapore’s disability policy approach, even though it is the birthplace of the international disability rights movement in 1981. As Chiu (2019) – the same guide dog user we began this chapter with – points out in a commentary, there is a lack of representation among organizations serving disabled people in Singapore. Thus, while Article 4(3) of the CRPD obliges state parties to ‘closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organisations’ in the development and implementation of legislation and policies to implement the CRPD, there is only a handful of disabled-led groups in Singapore, namely the DPA, the Handicaps Welfare Association, and the Singapore Association of the Visually Handicapped (SAVH) that would qualify as representative organizations as defined in General Comment No. 7. Notably, in March 2021, the Minister for Social and Family Development stated in Parliament that the proportion of disabled people on the board or management of social service organizations was not tracked and these organizations would determine the composition of their leadership teams based on their ‘organisational objectives’ (Zulkifli, 2021). These objectives presumably do not include disability representation and the Minister’s response speaks to a lack of appreciation for the importance of this principle among policymakers and even those within the disability sector, even though this is a key principle understanding the CRPD and the disability rights movement. Again, this can be attributed to the focus on practical outcomes rather than the principles underpinning disability rights and disability justice. This is not to say that disabled people are excluded from the policymaking process entirely; indeed, the Government has consulted disabled people, usually through service organizations, in identifying their needs and developing the EMs to address those needs. A key incident around disabled self-representation happened in the SAVH, which mandates a majority of blind people on its board in its constitution. In 2016, the sighted president proposed to remove the constitutional quota to ‘attract fresh talents, regardless of whether they can or cannot see, to improve how the charity is run’ (Tan, 2016). According to the then Executive Director, this was because the number of blind members ‘with the skills or knowledge needed to boost the management of the charity’ was limited (Tan, 2016). The same proposal was put up in 2017 but in both years was voted down by members of the association (Hiew, 2017). About a decade ago, a similar controversy arose during election season at the SAVH. Addressing what he considered to be ‘too much politicking’, the then Minister for Community Development, Youth and Sports had also asserted that ‘[i]t will be a very, very sad day if we say that it is only the visually handicapped who will look after the visually handicapped’ (Ng, 2005). Because the pragmatic approach towards disability policy focuses primarily on meeting needs and enabling access, rather than the respect for and protection of the rights of disabled people, it is unsurprising that this principle of self-representation has fallen by the wayside because it is considered neither necessary nor relevant to achieving the policy outcomes. In spotlighting the issue of disabled self-representation, Singapore’s experience highlights the necessity of both enabling access and enforcing rights in realizing the full and equal enjoyment of all human rights and fundamental freedoms by disabled people. The importance for the state to invest its resources and develop policies to incentivize and encourage stakeholders to buy into the goal of disability inclusion, or what we have characterized as

162  Research handbook on disability policy the measures taken to enabling access, cannot be understated. However, the enablement of access may not be enough without also entrenching the rights of disabled people. The case of disabled self-representation reveals the entrenched discriminatory view that disabled people are incapable of running their own organizations. Consequently, the pragmatic focus on access reinforces the problematic worldview that regards disabled people as objects of charity and welfare rather than rights-holders. This is not to say that we advocate for the exclusion of non-disabled people from organizations serving disabled people; rather, there is a need for stronger representation of disabled people across organizations that serve them. Indeed, there is a tacit acknowledgement within state mechanisms such as the EM to also have disabled representation on the committees, but such moves are often limited to particular spheres and depend on the benevolence of organizing parties, rather than the principles enshrined in the CRPD. At the time of writing, Singapore will be undergoing its first periodic review before the CRPD Committee and it remains to be seen how its involvement with the CRPD process at the international level might lead to a stronger engagement with disability rights in its disability policy. Looking ahead, the next step in the fulfilment of access as we have highlighted throughout this chapter is the embrace of the human rights model. Singapore has thus far realized some of the rights of disabled people enshrined in the CRPD by enabling access in different spheres of society. Ultimately, the full and equal participation of disabled people in society demands both the enablement of access and rights, which Singapore’s experience has demonstrated to be mutually constitutive and interdependent. While Singapore’s access-to-inclusion approach has enabled disabled people to enter into different spheres of society, this chapter offers a sobering reminder that the human rights model remains crucial to ensuring that disabled people are able to enforce their rights and enjoy full and equal participation in society.

NOTE 1.

Start of endnote. Singapore ratified the Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW) and the Convention on the Rights of the Child (CRC) in 1995 and the International Convention on the Elimination of All Forms of Racial Discrimination (CERD) in 2017. End of endnote.

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164  Research handbook on disability policy Meekosha, H., & Soldatic, K. (2011). Human rights and the global south: The case of disability. Third World Quarterly, 32(8), 1383–1397. doi:10.1080/01436597.2011.614800 Mégret, F. (2008). The disabilities convention: Human rights of persons with disabilities or disability rights? Human Rights Quarterly, 30(2), 494–516. doi:10.1353/hrq.0.0000 Ministry of Social and Family Development. (2007). Enabling Masterplan 2007–2011. Singapore: Ministry of Social and Family Development. Ministry of Social and Family Development. (2011). Enabling Masterplan 2012–2016. Singapore: Ministry of Social and Family Development. Ministry of Social and Family Development. (2017). 3rd Enabling Masterplan 2017–2021. Singapore: Ministry of Social and Family Development. MSRD MOM. (2021). Labour Force in Singapore 2020 Singapore: Manpower Research and Statistics Department, Ministry of Manpower. Ng, S. (2005, 2 October). Too much politicking at SAVH. The Straits Times. Offord, B. (2006). Activating human rights through questions of value and activism. In E. J. Porter & B. O. Offord (Eds.), Activating Human Rights (pp. 13–29). Bern: Peter Lang. Oliver, M. (1996). Understanding Disability: From Theory to Practice. Basingstoke: Macmillan. Onazi, O. (2020). An African Path to Disability Justice. Cham: Springer. Ong, L. (2019, 10 July). Students producing map to help people with disabilities navigate CBD. Today. ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Retrieved from https://www.todayonline.com/singapore/students-producing-map-help-disabled -people-navigate-cbd ​ ​ President’s Challenge. (2020). President Halimah launches Enabling Employment Pledge in conjunction with President’s Challenge 2020 [Press release]. Retrieved from https://www.presidentschallenge .gov.sg/files/Enabling-Employment-Pledge-in-conjunction-with-President-s-Challenge-2020-Launch ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -Media-Release.pdf ​ ​ Quinn, G., & Degener, T. (2002). Human Rights and Disability. New York and Geneva: United Nations. Shanmugam, K. (2014). Ratifying With Reservations Major Human Rights Treaties and Conventions. (92). Singapore Parliamentary Debates, Official Report. Sivalingam, P. S. (2020, 6 July). Forum: Campaigning must account for those with hearing loss. The Straits Times. Smart Nation and Digital Government Office. (2018). Smart Nation: The Way Forward. Retrieved from https://www.smartnation.gov.sg/files/publications/smart-nation-strategy-nov2018.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Spring Singapore. (2017). Press release: Launch of two Silver Industry Standardisation Initiatives. Retrieved from National Archives of Singapore https://www.nas.gov.sg/archivesonline/speeches/ ​ ​ ​ ​ ​ ​ ​ record-details/184ceea9-13ae-11e7-afb1-0050568939ad ​ ​ ​ ​ ​ ​ Tan, T. (2016, 28 August). Bid to change rules at association for blind fails. The Straits Times. Retrieved from https://www.straitstimes.com/singapore/bid-to-change-rules-at-association-for-blind-fails ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Thio, L.-a. (2009). Singapore human rights practice and legal policy: Of pragmatism and principle, rights, rhetoric and realism. Singapore Academy of Law Journal, 21(1), 326–362. Timah, C. (2019, 2 September). Almost 3 in 10 people with disabilities who are of working age are employed: MOM survey. ChannelNewsAsia. Retrieved from https://www.channelnewsasia.com/ ​ ​ ​ ​ news/singapore/disability-pwds-in-employment-mom-survey-parliament-zaqy-11863568 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Wang, D., & Lim, Y. J. (2020, 7 October). Forum: Insurers expected to deal fairly with all clients, including those with disabilities. The Straits Times. Retrieved from https://www.straitstimes.com/opinion/ ​ ​ ​ ​ ​ forum/forum-insurers-expected-to-deal-fairly-with-all-clients-including-those-with-0 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Williamson, B. (2015). Access. In R. Adams, B. Reiss, & D. Serlin (Eds.), Keywords for Disability Studies (pp. 14–16). New York: New York University Press. Wong, M. E., Low, J. M., & Appelhans, P. (2017a). Understanding CRPD implementation in Singapore. In D. L. Cogburn & T. K. Reuter (Eds.), Making Disability Rights Real in Southeast Asia (pp. 143–166). Lanham, MD: Lexington Books. Wong, M. E., Ng, I., Lor, J., & Wong, R. (2017b). Navigating through the ‘rules’ of civil society: In search of disability rights in Singapore. In J. Song (Ed.), A History of Human Rights Society in Singapore (pp. 169–186). Abingdon: Routledge. Wong, R., & Wong, M. E. (2015). Social impact of policies for the disabled in Singapore. In D. Chan (Ed.), 50 Years Of Social Issues In Singapore (pp. 147–166). Singapore: World Scientific.

From enabling access to enabling rights  165 Wong, T. (2012, 29 September). Govt to sign UN pact on rights for the disabled. The Straits Times. Retrieved from https://www.asiaone.com/News/Latest%2BNews/Singapore/Story/A1Story20120927 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -374130.html ​ Yap, A. (2013a, 13 September). Allowing guide dogs with the blind is a right, not a privilege. Today. Retrieved from https://www.todayonline.com/voices/allowing-guide-dogs-blind-right-not-privilege ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Yap, A. (2013b, 15 November). Help deaf, blind access broadcast, online media. The Straits Times. Zhuang, K. V. (2010). Enabling the Singapore story: Writing a history of disability. In B. Lockhart & T. S. Lim (Eds.), Monograph 42: Studies in Malaysian & Singapore History: Mubin Sheppard Memorial Essays (pp. 37–71). Kuala Lumpur: Malaysian Branch of the Royal Asiatic Society. Zhuang, K. V. (2016). Inclusion in Singapore: A social model analysis of disability policy. Disability & Society, 31(5), 622–640. doi:10.1080/09687599.2016.1197821 Zhuang, K. V. (2020). At the margins of society: Disability rights and inclusion in 1980s Singapore. Disability and the Global South, 7(1), 1813–1829. Retrieved from https://disabilityglobalsouth.files ​ ​ ​ ​ ​ .wordpress.com/2020/05/07_01_02.pdf ​ ​ ​ ​ ​ ​ ​ Zhuang, K. V. (2021). The included: Disability-led arts within inclusion in Singapore. Journal of Literary & Cultural Disability Studies, 15(4). https://doi.org/10.3828/jlcds.2021.36. ​ ​ ​ ​ ​ ​ ​ Zulkifli, M. (2021). Representation of Persons with Disabilities on Boards and Management of Social Service Organisations. Singapore Parliamentary Debates, Official Report.

13. An accessible public transit system as a right for people with disabilities in Taiwan Kuo-yu (Lisa) Wang and Pey-chun Pan

We begin this chapter with a personal narrative written by the first author to demonstrate the struggles she faces as a person with walking limitations living in a society that does not consider a remedy for these struggles to be her right. I was born in 1958. Back then, raising a child with disabilities was a family business, not to mention the need to solve my transportation problems, getting from home to school, from school back home, and to go see a doctor. All these movement and transportation issues were the family’s burden. My mother had to work to earn extra income to pay my transportation fee, while in my pocket there was some extra change to use just in case there was bad weather or I missed the bus to come home. My mother told me that it was the transportation fee that was the major financial burden for my family. None of us thought at the time that what would trouble us most would be society’s reluctance to share our heavy burden.

In this chapter we apply a human rights model to analyze disability policy in Taiwan (Degener, 2016), with an emphasis on the transportation system. Under a human rights model, people with disabilities have basic rights as human beings and as citizens, and these rights are not compromised by physical or mental disability. A human rights model of disability covers more than anti-discrimination law; it also takes account of the experiences of impairment of different stakeholders in formulating new policies, as reasonable accommodation to the needs of the impaired persons becomes vital to maintaining their rights in various social settings such as schools, hospitals, businesses, and recreational facilities. A human rights model of disability is focused on how to satisfy the diverse needs of people with disabilities so they can participate fully in social life (Maliszewska-Nienartowicz, 2020). The right to fully participate in social life and engage with society is at the core of human rights for people with disabilities globally (Földesi & Fördős-Hódy, 2019). The most recent trend in disability policy has been to expand the definition of the components of the social environment that people with disabilities encounter on a daily basis. These additions include the physical facilities and institutions that regulate the legal, social, economic, and cultural aspects of the social environment (Fina, 2017). A human rights approach to disability emphasizes the diversity of experience of people with disabilities and how their social environment disrupts their opportunities for social participation more than those of the rest of society (Broderick & Watson, 2020). The duty falls upon the state to develop a budget and strategy for investing the funds required to make the social environment accessible to people with disabilities (Lawson, 2014). Ensuring that people with disabilities can enjoy their rights of social participation requires an accessible and affordable public transit system. The government must not only reject discrimination against people with disabilities in the provision of services, but it must also show

166

An accessible public transit system as a right for people with disabilities in Taiwan  167 how the transit system can accommodate all the different kinds of impairment they may have (Broderick, 2020; Velho et al., 2016). Transit authorities must take these differences into account in designing the system. For example, people with a hearing impairment need to easily read the board that supplies travel information, and people with a visual impairment need to understand the voice broadcasting travel directions. The above-mentioned practices form the foundation of the right of people with different disabilities to have the same capacity as others to enjoy the benefits of a social life. Our position is that without a universal, accessible, and affordable public transit system, it is not possible for people with disabilities in Taiwan to engage in all the activities they want to. To fulfill its duty to modify the physical environment, the state must upgrade the existing transportation system and services. In this chapter, we describe the Taiwan government’s efforts to provide adequate transportation services to people with disabilities in the last four decades and explain how transportation policy and its execution have become extraordinarily complex. For example, unless front-line drivers or service providers are sensitive to the needs of people with disabilities, the public transit system can be a barrier to the accommodation of these needs. We demonstrate why the solution to the problem requires the government to stop treating its provision of services to people with disabilities as charity, under which rubric they just give what they can spare out of compassion, but rather as the fulfillment of a fundamental human right that, as such, must fully meet the recipients’ needs.

THE UNITED NATIONS DISABILITY HUMAN RIGHTS GUIDELINES AS APPLIED TO TRANSPORTATION: ARTICLE 9 OF THE CRPD The United Nations (UN) included guidelines for government transportation policy in its Convention on the Rights of Persons with Disabilities (CRPD) (United Nations, 2006). In this chapter, we have sought to operationalize our above-stated goal of applying a human rights model of disability to Taiwan’s transportation system by evaluating how well the government’s current transportation policies and their implementation conform to the CRPD guidelines, and how further conformance might improve the transportation system in the future. Specifically, we attempt to answer the following questions: (a) What can the CRPD guidelines contribute to improve the social participation of people with disabilities in Taiwan? and (b) What can be done to force the government to change its policies to better meet these guidelines? The CRPD divides the social barriers experienced by people with disabilities into different categories, but it identifies creation of an accessible environment as the most important measure that can be taken to eliminate social discrimination against this population (Liisberg, 2015). In 2010, Janet Lord presented to the UN’s CRPD committee a set of accessibility recommendations to serve as the cornerstone of the CRPD. She argued that without accessible transportation, relevant information, buildings, and roads, people with disabilities cannot enjoy their basic human rights in any society (Lord, 2010). Article 9, Section 1 of the CRPD begins as follows: 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

168  Research handbook on disability policy and communications, including information and communication 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.

The above excerpt requires the State to eliminate and reduce the barriers which prevent people with disabilities from fully participating in social life and enables them to live independently. Note that there are three major accessibility issues addressed in Article 9: (a) transportation, (b) information and technology, and (c) buildings, including both the inside and surrounding grounds (United Nations, 2006). In 2019, the UN released a document entitled ‘CRPD and its Human Rights Indicators’. These indicators were composed by a committee led by the Office of the United Nations High Commissioner on Human Rights and funded by the European Union (European Union, 2018). The document identifies the indicators of the Article 9 categories as (a) roads and transportation, (b) buildings and indoor and outdoor facilities, and (c) services open to the public, which include among other services the communication and provision of information. The CRPD indicators are presented in a three-by-three matrix, illustrated in Table 13.1 below. Table 13.1   Structure Process Outcome

Matrix illustrating the organization of the indicators on accessibility presented in Article 9 of the CRPD Road

Building

Information

 

 

 

 

 

 

 

 

 

Here we focus on the top-left cell of the matrix: the structure dimension as applied to roads and transportation. Article 9.1 states the following requirement: ‘Legislation must be enacted ensuring the right to access, on an equal basis with others, to the physical environment, transportation, services, information and communications, including ICTs and other facilities and services open or provided to the public, in both urban and rural areas’ (European Union, 2018). What is new in this formulation is the explicit recognition that it is the responsibility of the government to pass legislation to ensure that people with disabilities have the same access as others to the transportation system and related services. Article 9 (United Nations, 2006) and General Comment No. 2 released by the CRPD Committee (United Nations, 2008) characterize the government’s role in the transportation system as twofold: (a) follow the rules and guidelines in the regulations on the accessibility of resources for people with disabilities; and (b) enforce cooperation between the private and public sectors in implementing these regulations. Thus, it is necessary to analyze multiple complicated descriptions of a government’s role to understand how the state tries to fulfill its obligations under the CRPD (Lawson, 2014). In the rest of this chapter, we describe our methodology for evaluating Taiwan’s conformance to the CRPD guidelines, give a brief historical review of the development of disability policy in Taiwan, and then describe the current transportation policies and practices. In the

An accessible public transit system as a right for people with disabilities in Taiwan  169 final section, we discuss how the CRPD guidelines can contribute to the future development of comprehensive and inclusive transportation policies in Taiwan. Our analysis has two levels, macro and micro. At the macro level, we review the history of transportation policy and legislation in Taiwan. At the micro level, we describe the daily lives of people with disabilities, how they need to leave home to shop, go to school, go to work, and attend religious services or other community programs.

METHOD The authors belong to a research team; the purpose of which is to develop CRPD indicators that include accessibility guidelines for people with disabilities in Taiwanese society. The team consists of five research faculty from five different universities in Taiwan, plus two assistants from the Eden Social Welfare Foundation, which commissioned the project. The project was funded by the Ministry of Health and Welfare. To accomplish its mission, the team collected a wealth of information from multiple sources, combining qualitative analysis of transcripts from eight focus groups with an analysis of historical documents. It is the portion of this information related to the transportation guidelines that we consulted to write this chapter. The data we used came from interviews of disabled persons living in different cities in Taiwan, representatives from organizations that advocate for people with disabilities, and historical records from the Legislative Yuan in Taiwan. The experiences of people using the public transit system in Taiwan were particularly valuable and contributed greatly to the authors’ insights about accessibility issues within the system. The team’s interviews of people with disabilities occurred in focus groups in which four to eight persons with disabilities participated. The interviews were transcribed, keyed into our data system, and then sorted by date of the focus group. Another source of information for the chapter was the records of workshops and meetings of our research team held from 2017 to 2020. The historical records, which pertain to the process of composing disability legislation and the legislation itself, came from the Law Databank of Taiwan, which is sponsored by the Legislative Yuan. The authors searched for records about all the legislation passed by the Legislative Yuan over the past four decades. The records include word-by-word transcriptions of committee meetings and public hearings where legislators expressed their ideas or opinions about prospective legislation. The authors used keywords to search the databank for information on legislation related to disability, read through all the relevant records, and then downloaded them. In summary, the data for the chapter came from two sources: interviews of people with disabilities and their advocates from 2017 to 2020 and historical records from the Law Databank of Taiwan from 1980 to 2020. In the next section, we review the disability legislation passed by the Taiwan government.

THE EVOLUTION OF DISABILITY LEGISLATION AND POLICY IN TAIWAN The Taiwan disability system has been in existence for over four decades. During this period, the legislation has kept expanding, from 24 articles at the outset to over 106 articles in nine

170  Research handbook on disability policy chapters at present. In Table 13.2, we have listed key events in the history of disability legislation in Taiwan during this four-decade period, from 1980 to 2020. The table includes titles of the disability laws and their revisions, definitions of the disability categories specified in the legislation, the numbers of articles and chapters in each law, and, finally, the content of the laws related to transportation policy and practices. Before the CRPD: 1980 to 2006 When the first disability legislation in Taiwan, the Welfare Law for People with Disability, was passed in 1980, transportation policy was seen as a way to express the sorrow that society felt for people with disabilities. The way the government chose to deliver this message to the population was to provide people with disabilities and their families the financial resources they needed to live, through cash assistance programs, tax deductions, subsidies, and discounted fees. The law also established an administrative system that specifies which categories of impairment are to be officially recognized as disabilities. All the statistics on the disabled population of Taiwan are registered in a disability data system, but the system probably underestimates the real number of people with disabilities. The government also introduced a disability registration system but tied it to the system that assigns the impairment categories to individuals. Therefore, to gain access to services, people with disabilities first must be designated as having a particular disability. After 1980 Taiwan revised its disability policies and service systems through a series of reforms of the Welfare Law for People with Disability. Three major transportation policies were established from 1980 until 1997. The first policy involved discounted fees. The first discount, established by the 1980 Welfare Law, was a deduction of up to 50% for use of the public transit system by disabled persons. Another discount, established by Article 7 of the Vehicle License Act of 1990, was the equivalent of waiving the driver’s license fee. The second policy was to subsidize taxi companies to encourage them to purchase accessible taxis for people with disabilities. The third policy was to make transportation more accessible to people with disabilities by offering them personal assistance when they needed help with boarding, sitting in, and exiting a public vehicle. It was not until 1997, with the passage of the Welfare Rights Protection Act of People with Disabilities, that transportation policy and practices gradually began to change in fundamental ways. The main reform was to assign the major government ministries the primary roles in delivering services to people with disabilities (Legislative Yuan, 1979). The Ministry of Transportation and Communication was put in charge of administering the transportation policies and practices, including those pertaining to the accessibility of the transportation and communication systems. Since then, the Ministry has repeatedly tried to influence the further development of transportation policy for disabled persons. After the CRPD: 2007 to Present In the 2001 Rights Protection Act for People with Disabilities, the Taiwan government began to apply a human rights perspective to its disability service system. But when the UN adopted the CRPD in 2006, Taiwan began to recognize that it was facing a new social reality and that its disabled population would demand that it would no longer be discriminated against, and

Title of legislation

Welfare Law for People with Disability

No change

Draft of Welfare Rights Protection Act of People with Disabilities

Welfare Rights Protection Act of People with Disabilities

Welfare Rights Protection Act of People with Disabilities

1980

1990

1995

1997

1997

Articles and chapters included or amended 26 articles

14 (same as 1997 list).

75 articles and 7 chapters

14 (same as 1995 list except that hearing 75 articles and 7 impairment is divided into hearing impairment, chapters balance impairment, and speech and vocal impairment).

6 (vision impairment; hearing, motion and balance impairment; vocal and speech impairment; movement limitation; multiple disabilities; other). Recognition of only the most severe cases. 31 articles 11 (vision impairment, hearing impairment, movement limitation, autism, chronic disease, facial disfigurements, loss of internal organ function and related disabilities, multiple disabilities, unconscious chronically persistent vegetative state, dementia, other). Relaxation of required level of severity to mild or moderate. 12 (mental health added to 1990 list) 59 articles Legislative process completed, but the final draft would take another 2 years.

Disability categoriesa

Chronicle of disability legislation in Taiwan from 1980 to 2020

Year

Table 13.2

Free access to national parks. 50% discount of fee for use of privately owned leisure facilities. Article 3: Ministry of Transportation and Communication designated as the administrative authority in charge of transportation services for people with disabilities. No changes.

Article 22: Requirement that the public transit system reserve seats for people with disabilities. Accessible facilities added.

Transport-related articles or regulations Article 20: 50% discount of public transit ticket prices.

An accessible public transit system as a right for people with disabilities in Taiwan  171

No change

No change

No change

Rights Protection Act for People with Disabilities

No change

Rights Protection Act for People with Disabilities

2001

2003

2004

2007

2011

2021

No change.

Amended all 109 articles and 9 chapters.

Amended 3 articles (26, 62, and 64-1). 16 (same as 2001 list). Amended 2 articles (51-1, 65-1). Introduced ICF scheme to replace the disability 109 articles and 9 definition system (now 8 ‘body systems’ with chapters. coding numbers). Amended all articles from 2001. The old 16 categories of disabilities fit into the Amended 57 articles. ICF scheme, with modifications.

16 (same as 2001 list).

Articles and chapters included or amended 16 (lifelong epilepsy and rare diseases added to Amended 22 articles 1997 list). (2, 3, 6, 7, 9, 11, 16, 19, 20, 36–42, 47, 50, 51, 58, 60, and 67).

Disability categoriesa

Requirement for accessible buses. Regulations and restrictions added on eligibility for discounted fees. Requirement added that public transit be accessible under CRPD guidelines.

No changes.

No changes.

Transport-related articles or regulations Reserved parking spaces required for drivers with disabilities. Regulations added for guide dogs serving people with vision impairment. Regulation of accessibility of public transit system, including long-distance and city buses, airport shuttles, airplanes, boats, and harbor craft. No changes.

Notes: All the information in this table was taken from the Law and Legislation Databank in Taiwan. Disability legislation has been amended 19 times and the name of the law has been changed 2 times. a Disability categories taken from Taiwan Disability Legislation, 1979 to present.

Title of legislation

Year

172  Research handbook on disability policy

An accessible public transit system as a right for people with disabilities in Taiwan  173 to receive effective and affordable disability services as a human right. Since Taiwan was not a member state of the UN, the only way it could catch up with the international community in its movement toward human rights-based disability policies was to pass domestic legislation. Finally in 2013, the Legislative Yuan passed a statute called The Implementation of CRPD, which ratified the CRPD and promised that the government would fully comply with it by implementing its guidelines. From 2013 to the present, the question from the transportation standpoint has been how society, the government, the politicians, and the organizations representing people with disabilities would react to the need to adopt disability policies based on the premise that accessible and affordable transportation services for disabled persons is not ‘charity’ or ‘welfare’ but a basic human right that must be honored in full. However, the way the government has approached disability policy-making after the CRPD is quite similar to how it approached transportation policy and practices before the CRPD. Although the government has been eager to fully comply with the CRPD guidelines, it has needed time to adjust and adapt its disability policies and provision of services accordingly. Nonetheless, the guidelines have already had a major impact on Taiwan’s disability system, as the Ministry of Transportation and Communication and the legislature have had to update and renew the old policies. In 2007, Taiwan began this process by incorporating the WHO International Classification of Functioning, Health, and Disability (ICF) scheme into its disability registration system. This was another major policy change as, before the adoption of the ICF scheme, adding a new category of disabilities to the officially recognized list of disabilities simply required endorsement by three legislators and passage by the Legislative Yuan. The ICF system consolidated the old 16 categories into eight ‘body systems’ that were less susceptible to political intervention. Finally, the present disability service system has a huge array of stakeholders or interest groups that cannot be overlooked by anyone wanting to change the current systems. These interest groups include organizations of people with specific disabilities, medical professionals, assistance-device producers, parent groups representing children with intellectual and developmental disabilities, and groups of homeowners and service providers. All these interest groups have influenced the content and direction of Taiwan’s disability legislation in the past as well as now.

CHALLENGES FACED BY PEOPLE WITH DISABILITIES USING THE TRANSPORTATION SYSTEM IN TAIWAN: ISSUES AND RESEARCH The disability research community in Taiwan has mimicked the government in paying too little attention to the transportation challenges faced by people with disabilities. In addition to the data collection processes described in the Method section, we searched the available databanks for published papers and unpublished graduate student theses from 2000 until now for the purpose of documenting the problems that still needed to be addressed. The theses are worth referencing because the students collected data from the disability community and used active research methods to accompany people with disabilities as they pursued their daily lives, and they experienced the same difficulties that people with disabilities encounter on a daily basis (Hsu, 2013; Lin, 2015; Pen, 2012). We also examined results from a recent

174  Research handbook on disability policy research project funded by the Taiwan government documenting the parking problems faced by people with disabilities (Chang, 2015). In preparing this chapter, the purpose of checking these studies was to verify their findings and then look for additional points we could make that go beyond the findings themselves. Our inquiries led us to select three specific issues that we thought deserved special attention in the chapter. To provide some background for these issues, in Table 13.3 below we outline the current usage of various transportation systems in Taiwan by people with disabilities. Table 13.3

Numbers of people with disabilities and their companions using each component of the Taiwan transportation system each year from 2016 to 2019

 

Railroad system High speed rail system Domestic airline Waterway system Bus system

2016 5,039,310 1,746,947 51,793 196,266 162,797,253

2017 5,371,769 1,860,453 123,995 199,324 135,804,089

2018 5,545,323 1,866,141 120,658 221,194 132,568,029

2019 5,763,389 1,875,055 128,348 253,273 138,181,882

Source: From the Second State Report on the CRPD, supplementary document on statistics (Executive Yuan, 2020, p. 26).

Issue 1: Uneven Distribution of Transit Options in Rural and Urban Areas The first major complaint we encountered was uneven distribution of transportation resources between urban and rural areas of Taiwan (Hsu, 2013). Currently, only three major cities have a Metro system: Taipei, Taichung, and Kao-hsiung. Elsewhere, people with disabilities must rely on buses, taxis, and accessible vans or scooters to go to schools, hospitals, and workplaces. If the bus does not show up as scheduled, or the bus company changes its schedule without notifying riders in advance, the riders’ daily routines will be disrupted (Lin, 2015). The National Sample Survey of Households with a Member with a Disability was conducted in 2016 and published by the Taiwan Ministry of Health and Welfare (2018). Chapter 4 of the report reveals the attitudes and experiences of people with disabilities regarding recreation, going out from home, and using the public transit system. The three major questions on the Survey ask about transportation and social participation issues. The first question asks how often the person went out from home in the previous month. In response, 91.3% of the respondents reported that they went out at least once and only 8.7% reported that they never left home. Of the 91.3%, 57.5% reported that they went out nearly every day and 9.4% reported going out once or twice in the month. The second question asks why the person goes out. For 54.8% of respondents, the reason was to perform daily routine activities (e.g., garbage dumping, walking around the neighborhood, visiting friends, shopping), for 51.0% it was a medical appointment, and for 30.0% it was exercise. The third question has two parts: it asks respondents when they go out, (a) who helps them, and (b) what types of public transit they use. As for who helps them, 45.9% asked a family member to provide a ride, 28.6% reported driving a special motorcycle, 9.8% driving a car, 8.0% taking a regular taxi, 7.4% riding a bicycle, 2.9% taking an accessible van, 2.2% driving a scooter, and 0.3% taking an accessible taxi. As for public transit, taking a public bus was reported by 17.3%, the Metro by 6.6%, rail by 1.3%, and long-distance bus by 0.8%. Overall, use of the public transit system was reported by only about 19% of the respondents.

An accessible public transit system as a right for people with disabilities in Taiwan  175 This uneven distribution of transportation services is also seen in a report from Canada. In one case, some local authorities in southern Ontario began to take action to solve the transportation problem faced by rural residents by providing specialized services and cooperating in the adaptation of the general transit system to the circumstances in their communities (McCall, 2014). The specialized services are available only for people with disabilities who are enrolled in the general service system. In rural Canada, the distance between towns or small villages is greater than in Taiwan. If only one person with disabilities lives in a remote village, for example, the authorities need to consider the cost of providing transportation for that one person. Despite the shorter distances, accessible vans are important for people with disabilities who live in rural Taiwan. Issue 2: Accessible Vans and Accessible Taxis: Price Matters The second finding is that the price of using an accessible taxi or van in Taiwan is too high for people with disabilities; for those living in rural communities, there is the additional problem of accessibility, meaning that they often must fight to reserve one of a limited number of vans (Hsu, 2013; Lin, 2015). Hsu’s (2013) research reveals that making reservations is especially difficult for those who are blind—for example, a man with limited mobility and poor vision who needs to hire an accessible van to get to work. But the research also reveals that accessible taxis are too expensive for people with disabilities in Taiwan (Hsu, 2013; Lin, 2015). As people with different types of disabilities have different transportation needs, the question arises as to which categories should be eligible to apply for the accessible van services provided by local governments. In its Second State Report on the CRPD, the Executive Yuan (2020) provided statistics on the number of accessible vans and taxis in Taiwan. The number of vans increased from 1,892 in 2016 to 2,164 in 2019, and the number of accessible taxis purchased by the taxi companies increased from 540 in 2016 to 980 in 2019. These taxis were distributed unevenly between the cities and rural areas; for instance, Taipei City had nearly 300 of them in 2019, whereas the rural county of Chai-yi had only five. Only 1.2% of people with disabilities used an accessible taxi in the last three months of 2016; the major difficulties were that it was hard to make a reservation (24.5%) and the ride was too expensive (19.2%). In fact, the price for an accessible taxi is even steeper than for a van. Table 13.4   Operation Model Fee Disability type Problem

Comparison of accessible vans and accessible taxis in Taiwan Accessible van Local government Charity/welfare Low payment Mainly for people with a mobility problem Hard to make reservations

Note: This table was created by the authors.

Accessible taxi Businesses User pay By meter, plus extra cost All people with a disability, plus elderly people Unequal usage by different income groups

176  Research handbook on disability policy This uneven distribution of public transit resources exacerbates the transportation problem faced by people with disabilities. In rural Taiwan, with no convenient Metro system and few accessible taxis and vans, the mobility right of people with disabilities has been compromised. In Table 13.4 we compare accessible vans and taxis in Taiwan on various dimensions. The table illustrates our conclusion that both options create problems for people with disabilities living in rural areas, even though the problems presented by the two types of vehicle are somewhat different. Issue 3: Which Disabilities Make One Eligible to Park in a Reserved Space? This problem is particularly serious in Taipei City because it is so urbanized. Since 1990, the government’s disability policies have waived drivers’ license fees for people with disabilities, as required by Article 7 of the Vehicle License Act. According to updated statistics, in the fiscal year 2019 the policy applied to 685,617 vehicles and exempted 6,337,656,000 NT (new Taiwan dollars) in taxes (Ministry of Finance, 2020). The legislation also made reserved parking spaces available for drivers with disabilities, but it did not specify which impairments qualify for reserved parking at hospitals, schools, parks, shopping malls, and downtown business zones. The parking management companies only check whether the driver has a disability ID card, which does not specify the type of impairment. The problem is that those with a non-mobility issue, such as a mental health condition or a hearing impairment, or non-disabled family members (because they care for the disabled member), get to occupy reserved parking spaces, leaving fewer spaces for the people who need them. To make matters worse, there have also been parking fee waivers aimed at incentivizing just those groups named above who don’t need the spaces. Not surprisingly, drivers with a mobility problem complain about these policies. So far, there has been only one research study on this issue (Chang, 2015). The researcher combined different research methods to collect the data: testimonials from drivers with a disability, observation at parking areas to check who is parking in the reserved spaces, and in-depth interviews with parking managers (Chang, 2015). The results show that most respondents who were not eligible to park in reserved spaces but did so anyway were aware of the problem and also knew that they were doing nothing unlawful. In short, the government policy of basing reserved parking eligibility solely on possession of a disability ID card has led to disputes among people with different types of impairment, but the various stakeholders are deadlocked and there is no resolution in sight.

TOWARD APPLYING A CRPD HUMAN RIGHTS MODEL OF DISABILITY TO TRANSPORTATION POLICY AND PRACTICES IN TAIWAN Over the last four decades, disability legislation has repeatedly been amended and ideas repeatedly borrowed from other societies in an effort to correct the problems with Taiwan’s disability service system. What the discussion of the above three issues highlights is that with respect to transportation services, there is a gap between policy ideas and actual practice. Authorities with good intentions have managed to enact policies with unforeseen negative consequences. Who should be punished by the system? Why is there such a large price differ-

An accessible public transit system as a right for people with disabilities in Taiwan  177 ence between accessible vans and accessible taxis? Whose disabilities should be recognized by society as eligible for reserved parking spaces? The laws aimed at applying the CRPD in Taiwan specify that the formulation of transportation policy and the maintenance of an accessible and affordable public transit system are duties of the state, which is also responsible for the enforcement of full compliance with the guidelines in Article 9 of the CRPD and the section General Comment No. 2 (United Nations, 2008). A well-designed and well-implemented public transit system is a precondition for achieving this goal.

EXAMPLES OF TRANSPORTATION PROBLEMS FACED BY DISABLED PERSONS IN TAIWAN The problems with Taiwan’s current transportation system are described in the previous section in a rather abstract way. In this section, we concentrate on two concrete examples of problems of street-level accessibility to medical clinics and what resources must be invested to improve this accessibility in contexts where the local government is the key actor. The data herein were collected from 2017 to 2020 by our research team. The First Example: Local Implementation and Commitment of Resources The first of our two examples was presented to the research team in April 2020. In the final stage of collecting data from people with disabilities and their representing associations, the team held a workshop in Hue-lien in the eastern part of Taiwan. A person from a local organization representing people with disabilities in a rural area wanted the team to make the following suggestion to the legislature: My opinion is that the following should be added to the third process dimension of the original indicator: The provision regarding the annual improvement of local street and road surfaces to make them accessible to people with disabilities should include the provision that each year the local government must increase its local budget by at least 3% to make the streets accessible.

This woman’s opinion was not accepted by the local government representative, who also attended the workshop; instead, the representative wanted the research team to support the removal of the specific requirement of a fixed rate of budget investment. Speaking to our research team, representatives of the disabled group had vigorously expressed their concern about the slow progress in making the environment accessible to people with disabilities, while the local government insisted that the fixed rate would squeeze other projects in the budget. The research team promised the group that we would bring this issue back to the central government. In the end, the already tiny 3% modification of the budget was further reduced to between 1% and 3%. This example demonstrates the intense disagreement that can be expressed by people with disabilities on the one side and local governments on the other about how much of the available resources should be invested to meet local needs and conform to the CRPD guidelines. The rate increase could be interpreted as a percentage of either the budget for road and street construction or the total annual expenses of the local government. The former is less than the latter, and if the increase were to be construed as a percentage of the total budget it would

178  Research handbook on disability policy represent a huge investment of resources that the local government did not have. As of now, the amount of money in the budget to be invested in making streets accessible to people with disabilities still has not been determined. Local disabled groups frequently discussed with the research team their daily experiences traveling on the roads and streets, and they made strong and pointed suggestions about how to improve their condition. For these groups, implementation of the CRPD guidelines is important for their daily lives, and they rely on their local governments being strongly committed to solving the problems. The above case illustrates how difficult a challenge fully complying with the CRPD guidelines has been for Taiwan. The structural problem of uneven development between modern urban areas and traditional rural farming areas has put people with disabilities in an increasingly difficult position when it comes to transportation, and they don’t have many choices. The Second Example: Unintended Discrimination or Lack of Disability Awareness? The second example came to light during one of the research team’s small face-to-face workshops. As noted above, only three cities in Taiwan have Metro systems, one of which is Kao-hsiung. A D/deaf person in the group described to the team the following personal experience involving a trip on the Kao-hsiung Metro. When he arrived at his destination, he got off and swiped his 50%-discounted Metro card at the gate. He was stopped by a Metro staff person, who wanted to know whether he had enough money for the card and whether he really had a disability. The D/deaf person could not understand what the staff person was saying, because he uses only sign language, which the staff person did not understand. Finally, the staff person took the D/deaf person to the police station. The D/deaf person was very angry because the staff person did not recognize his mistake. The D/deaf person had no visible impairments or disabilities; his limitation was an inability to communicate. The D/deaf person suggested to the research team that they communicate his experience to the government and ask them if the staff person’s behavior was an example of discrimination. The research team drew three conclusions. First, the staff person did not know how to use sign language because the company did not train him to use it; thus, the failing lay more strongly with the company than the individual staff member. Second, according to the law the D/deaf person was entitled to use the discounted ticket without disruption by a staff person checking his status. His mistake was checking the D/deaf person’s disability status rather than determining whether he had enough money for the Metro card. Third, the staff person’s behavior might have violated Article 5 of the CRPD, which addresses cases of indirect discrimination. In this case, ‘indirect discrimination’ meant that the behavior caused an extra burden, either financially or procedurally, to a person with disabilities who was attempting to attain a benefit he was entitled to under the law.

HOW SOME WESTERN COUNTRIES HAVE APPLIED THE CRPD GUIDELINES TO MODIFY THEIR TRANSPORTATION SYSTEMS Taiwan has not been alone in modifying its transportation practices. Since the passage of the CRPD, many countries have published examples of and ideas about implementing Article 9 (Amucheazi & Nwankwo, 2020; Kachaje et al., 2014; Ramanna, 2016; Stjernborg, 2019). An

An accessible public transit system as a right for people with disabilities in Taiwan  179 interesting set of analyses has been published documenting the obligations faced and positive measures taken by states that ratified the CRPD and are attempting to comply with it (Lawson, 2014). Sweden, Canada, and Britain are among the countries that have begun updating their public transit systems to conform to the CRPD guidelines (Földesi & Fördős-Hódy, 2019; Litman, 2021; Stjernborg, 2019). These efforts by different countries provide evidence that ratification of the CRPD has brought about such changes in the transportation systems as professional training of bus drivers to make them more sensitive to the needs of people with different disabilities, and the provision of accessible public transit to people with disabilities who live in rural areas. Under ‘Issue 1’ above, we described an example of a successful policy in Canada aimed at improving access in rural areas of Ontario (McCall, 2014). Recently, Sweden and Britain have published reports or articles on improving their public transit systems to help assure that people with disabilities have an accessible and comfortable riding experience (Bezyak et al., 2020; Pearson, 2018). For example, wheelchair users in London have been struggling to decide what is the most suitable way to ride on public buses and how much space the buses should reserve for wheelchair seats (Pearson, 2018). The most recent of these published reports indicates that Sweden still needs to readjust its transportation system to meet the requirements under Article 9, such as by providing professional training to bus drivers and by reviewing and then updating all its current transportation practices from a human rights perspective (Stjernborg, 2019). In addition, discussion of the economic effect of accessible transportation on people with disabilities has recently begun to draw attention from researchers, especially in middle- or low-income countries (Kett, Cole, & Turner, 2020). The discussions have focused on providing special services or adopting a more inclusive approach to satisfy the needs of disabled persons (Rebstock, 2017). These discussions or debates still have not been settled, but one particular trend in the thinking is clear—accessible public transit is vital for people with disabilities if they are to have the same social status as those without disabilities, and it is the responsibility of the state to carry the burden of implementing the CRPD guidelines to assure their rights.

CONCLUSION: THE EVOLUTION OF TRANSPORTATION FOR PEOPLE WITH DISABILITIES IN TAIWAN—FROM A PERSONAL PROBLEM TO A PUBLIC ISSUE TO A COMPLETE GOVERNMENT RESPONSIBILITY In this chapter, we applied the CRPD human rights model of disability to evaluate the transportation policies of Taiwan and assess how people with disabilities experience the current system. The major challenge faced by the Taiwan government, which has the responsibility to protect the rights of people with disabilities, is how to modify its current disability policies to bring them into compliance with the CRPD guidelines. Before ratifying the CRPD, Taiwan had established a complicated disability policy and service system through multiple pieces of legislation. Therefore, the challenge it faces today is not from the CRPD guidelines themselves but from the current administration’s perception of the government’s role under the CRPD. The cases presented in the last section illustrate this perception and preoccupation.

180  Research handbook on disability policy The first disability legislation in Taiwan was passed before Taiwan gradually became an open and democratic society. Back then, disability legislation functioned as a showcase to convince the world that Taiwan cared about people with disabilities, but the service systems were accessible to only a handful of people whose impairments fit the government’s strict criteria for a disability. Therefore, the first decade of disability legislation left the problem nearly untouched. Only when Taiwan released the Martial Law in 1997 did meaningful changes begin to appear. From 1990 onward, as the political system in Taiwan was becoming more open and democratic, and the initiation of regular local and national elections was motivating local politicians to appear more open and democratic to their constituents, the Legislative Yuan became the main battleground for all the politicians and their political parties. The major revisions of disability legislation that began to appear in the 1990s proved the reality of this trend. Public advocates for people with disabilities and their organizations participated in the revision process; from the beginning, they were allowed to express their opinions on the content of legislation to the Legislative Yuan. Examples of policies that their pressure helped move the Yuan to enact were the tax exemption of drivers’ license fees for people with disabilities and expansion of exemptions to family members (Legislative Yuan, 1991). These changes made the provision of transportation and related services no longer the burden of the immediate family, but rather the obligation of state and local governments. The first case described in the last section demonstrates local government’s commitment (or lack thereof) to redistribute resources to improve the condition of roads and streets at the community level. The second case illustrates the need of Taiwanese society to rethink what discrimination means. Such cases remind us that a sufficient supply of services, as well as front-line workers being professionally trained to be sensitive to the experience of disability, are needed to fulfill the rights of people with disabilities that have not been satisfied within the current system. The CRPD grew out of the disability movements in Global North countries and from the historic struggle for individual rights (Francis, 2018). However, Global North countries have followed different paths than Eastern Asian countries in trying to win rights for people with disabilities. Taiwan is unique among Eastern Asian countries in that before the CRPD it had a disability system that combined a charity model with a quasi-rights model, rather than a genuine rights model, to address the challenges faced by people with disabilities. What characterizes a charity model is the reduction of the financial burden of people with disabilities through discounts, exemptions, and totally free services. This approach took hold in the 1980s and continues to this day. The quasi-rights model was not much different in practice than the charity model. The idea was that because they are ‘citizens’, people with disabilities have the right to receive ‘welfare’ as compensation for their afflictions. The greater the welfare benefit, the more their rights are protected by society. This perception by the Taiwanese government of the situation for disabled persons led it to adopt policies that combined charity and welfare rather than policies aimed totally at providing and protecting human rights. Thus, the current policies and practices do not treat people with disabilities as having the same status as other citizens, but rather as people who need special services. This attitude from both sides, the government and people with disabilities themselves, has created a human rights dilemma, which is hidden behind all the discussions and debates about implementing the CRPD guidelines.

An accessible public transit system as a right for people with disabilities in Taiwan  181 A transportation system that fully meets the rights and needs of people with disability is a primary factor affecting their social participation, and Taiwanese people with disability see this clearly as their right. To fulfill both rights expectations and obligations, states such as Taiwan must provide accessible transportation as a fundamental component of government service, protected by legislation, adequately resourced, and responsive to the UNCRPD.

REFERENCES Amucheazi, C., & Nwankwo, C. (2020). Accessibility to infrastructure and disability rights in Nigeria: An analysis of the potential of the Discrimination against Persons with Disability (Prohibition) Act 2018. Commonwealth Law Bulletin, 46(4), 689–710. https://doi.org/10.1080/03050718.2020.1781674 ​ ​ ​ ​ ​ ​ ​ Bezyak, J. L., Sabella, S., Hammel, J., McDonald, K., Jones, R. A., & Barton, D. J. (2020). Community participation and public transportation barriers experienced by people with disabilities. Journal of Disability and Rehabilitation, 42(23), 3275–3283. https://doi.org/10.1080/09638288.2019.1590469 ​ ​ ​ ​ ​ ​ ​ Broderick, A. (2020). Of rights and obligations: The birth of accessibility. The International Journal of Human Rights, 24(4), 393–413. https://doi.org/10.1080/13642987.2019.1634556 ​ ​ ​ ​ ​ ​ ​ Broderick, A., & Watson, P. (2020). EU disability non-discrimination law. In D. Ferri & A. Broderick (Eds.), Research handbook on EU disability law (pp. 121–145). Edward Elgar Publishing. Chang, H.-H. (2015). The politics of disability classification and redistribution justice: A case study of accessible parking in Greater Taipei area. Social Work & Social Policy, 19(1), 91–138 [in Chinese]. https://sociology.ntpu.edu.tw/uploadFiles/file/20151124/20151124154830_53314.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Degener, T. (2016). Disability in a human rights context. Laws, 5(3), 35. https://doi.org/10.3390/ ​ ​ ​ ​ ​ laws5030035 European Union. (2018). EU-OHCHR bridging the gap I: Human rights indicators for the Convention on the Rights of Persons with Disabilities in support of a disability inclusive 2030 agenda for sustainable development. https://bridgingthegap-project.eu/crpd-indicators/#HumanRights ​ ​ ​ ​ ​ ​ Executive Yuan. (2020). Implementation of the CRPD Second Report Submitted under Article 35 of the Convention (Taiwan). https://www.roc-taiwan.org/uploads/sites/76/2021/08/Implementation-of-the ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -CRPD-Second-Report-Submitted-under-Article-35-of-the-Convention.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Fina, V. D. (2017). Article 3 [general principles]. In V. D. Fina, R. Cera, & G. Palmisano (Eds.), The United Nations Convention on the Rights of Persons with Disabilities: A commentary (pp. 119–136). Springer. Földesi, E., & Fördős-Hódy, E. (2019). Mainstreaming the needs of people with disabilities in transport research. In B. Müller & G. Meyer (Eds.), Towards user-centric transport in Europe (pp. 65–73). Springer. Francis, L. (2018). Understanding disability civil rights non-categorically: ‘The minority body’ and the Americans with Disabilities Act. Philosophical Studies, 175(5), 1135–1149. https://doi.org/10.1007/ ​ ​ ​ ​ ​ s11098-018-1067-x ​ ​ ​ Hsu, S.-W. (2013). The experiences of people with disabilities going out and the difficulties they encounter: A study of Chai-yi county [Unpublished master’s thesis]. National Chung Cheng University. Kachaje, R., Dube, K., MacLachlan, M., & Mji, G. (2014). The African Network for Evidence-to-Action on Disability: A role player in the realisation of the UNCRPD in Africa. African Journal of Disability, 3(2), 1–5. https://doi.org/ ​ ​ ​ 10.4102/ajod.v3i2.86 Kett, M., Cole, E., & Turner, J. (2020). Disability, mobility and transport in low- and middle-income countries: A thematic review. Sustainability, 12(2), 1–18. https://doi.org/10.3390/su12020589 ​ ​ ​ ​ ​ Lawson, A. (2014). Accessibility obligations in the UN Convention on the Rights of Persons with Disabilities: Nyusti & Takács v Hungary. South African Journal on Human Rights, 30(2), 380–392. Legislative Yuan. (1979). Bulletin of the Legislative Yuan (Vol. 68). Taipei, Taiwan. https://Law.moj .gov.tw ​ Legislative Yuan. (1991). Bulletin of the Legislative Yuan (Vol. 76). Taipei, Taiwan. https://Law.moj .gov.tw ​

182  Research handbook on disability policy Liisberg, M. V. (2015). Accessibility of services and discrimination: Concentricity, consequence, and the concept of anticipatory reasonable adjustment. International Journal of Discrimination and the Law, 15(1–2), 123–144. https://doi.org/10.1177/1358229114558545 ​ ​ ​ ​ ​ Lin, M.-Y. (2015). Let us see how elderly grandpop and grandmom go out: The barrier elderly people face and their choice and strategy: Case of Kao-hsiung City [Unpublished master’s thesis]. National Chung Cheng University. Litman, T. (2021). Evaluating accessibility for transport planning. Victoria Transport Policy Institute. https://www.vtpi.org/access.pdf ​ ​ ​ ​ ​ Lord, J. E. (2010, October 7). 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, United Nations CRPD Committee. https://studylib.net/doc/7877627/ accessibility-and-human-rights-fusion-in-the-crpd--assess... ​ ​ ​ ​ ​ ​ ​ ​​ Maliszewska-Nienartowicz, J. (2020). Accessibility for persons with disabilities as an important element of economic and social development: The European Union case [Special issue]. European Research Studies Journal, 23(1), 1084–1099. https://www.um.edu.mt/library/oar/handle/123456789/78081 ​ ​ ​ ​ ​ ​ ​ ​ ​ McCall, K. (2014). Emerging trends in specialized transport in rural communities: Exposing the myths. https://www.karlencommunications.com/adobe/Emerging%20Trends%20in%20Specialized ​ ​​ ​ ​ ​ ​ ​ ​ ​ ​ %20TransportMcCall2014.pdf ​ ​ ​ Ministry of Finance. (2020). Annual finance statistics of 2019. Taipei, Taiwan. https://mof.gov.tw ​ ​ ​ Ministry of Health and Welfare. (2018). National sample survey of households with a member with a disability. Taipei, Taiwan. https://www.mohw.gov.tw/dl-70516-15cf0b84-9f71-4d1c-9954 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -062544fbdf3d.html, https://dep.mohw.gov.tw/DOS/lp-5096-113-1-20.html ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Pearson, A. (2018). The debate about wheelchair spaces on buses goes ‘round and round’: Access to public transport for people with disabilities as a human right. Northern Ireland Legal Quarterly, 69(1), 1–17. https://doi.org/10.53386/nilq.v69i1.68 ​ ​ ​ ​ ​ ​ ​ Pen, P.-C. (2012). The practice and limitations of the social model in the UK: A study of the transportation program for the elderly and people with disabilities in the Leeds area. [Unpublished doctoral thesis]. National Chung Cheng University. Ramanna, P. (2016). Accessibility of persons with disabilities for barrier-free environment issues and challenges in India. Second International Conference on Digital Technologies and Innovation in Science and Society. http://srishtiinternational.org/wp-content/uploads/2017/08/2nd-CONFERENCE ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ [email protected] ​ ​ Rebstock, M. (2017). Economic benefits of improved accessibility to transport systems and the role of transport in fostering tourism for all. Discussion paper presented at 2017 International Transport Forum. https://www.itf-oecd.org/sites/default/files/docs/improved-accessibility-fostering-tourism-for ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -all.pdf ​ Stjernborg, V. (2019). Accessibility for all in public transport and the overlooked (social) dimension: A case study of Stockholm. Sustainabilty, 11(18), 4902. https://doi.org/10.3390/su11184902 ​ ​ ​ ​ ​ United Nations. (2006, December 6). Convention on the Rights of Persons with Disabililities and optional protocol. https://www.un.org/development/desa/disabilities/convention-on-the-rights-of ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -persons-with-disabilities.html. ​ ​ ​ United Nations. (2008). General Comments by CRPD Committee, No. 2. Velho, R., Holloway, C., Symonds, A., & Balmer, B. (2016). The effect of transport accessibility on the social inclusion of wheelchair users: A mixed method analysis. Social Inclusion, 4(3), 24–35. https:// doi.org/10.17645/si.v4i3.484 ​ ​ ​ ​ ​ ​

14. Narrative 4: The effect of disability policy on lives Chien-Ju Chou

Chien-Ju Chou is a Taiwanese female disabled activist and the founding director of Taiwan Disabled Women’s Alliance for Equal Rights. Her narrative was translated into English by Jun-jie Lin. **** I am a woman with disabilities. My life has been changeable and unstable due to Spinal Muscular Atrophy (SMA). The social environments and organizations in Taiwan, where I live, have been progressed because the disability rights movement has continuously advocated for the rights of people with disabilities. The improvement of disability rights has enriched my life. Disability support services in Taiwan, however, still require more improvement.

SPECIAL EDUCATION AND RIGHT TO EDUCATION FOR PEOPLE WITH DISABILITIES In 1993, when I was studying in elementary school, my mother had to carry me to the class on the second floor because there was no elevator in the building. After my mother argued with the school, the school authority changed my class to the first floor. However, I still lost many learning opportunities because specialized classes and facilities were built on the upper floors where I could not get to. By the time I reached the fifth grade, the Taiwanese government started to promote the policy of barrier-free environments in schools, requiring schools to build elevators for people with disabilities. Thus, I finally had a chance to join the music class, computer class, and library, exploring various pieces of knowledge. Nevertheless, my body condition changed because of SMA, and I needed more assistance than before. When the Taiwanese government amended the law to allow residents to hire foreign care workers, my family employed a foreign care worker to assist me daily and in school. With the support from the foreign care worker, I no longer needed to rely on the support from my mom. I could start to arrange and explore my life independently. Nevertheless, the cost of hiring foreign care work was borne by my family and it became a heavy financial burden for the family. I started to receive formal special education resources when I studied in senior high school. Teachers in the special class in school understood my individual needs. They developed Individualized Education Programs at the beginning of every semester, dealt with problems of class accessibility, and discussed with me how to resolve barriers in and out of school. Furthermore, we also discussed how to resolve related problems when I study in a university in the future. Then, I entered a university in Taipei. Before I attended, the Assistive Device Center of the Taiwanese Ministry of Education supplied an electronic wheelchair, allowing me to 183

184  Research handbook on disability policy move freely on the campus. Furthermore, the school had a meeting concerning individualized supportive plans for students with disabilities and proceeded to improve the conditions of accessible restrooms in the school, freeing me from the problems of going to the restroom. Due to the accessibility and convenience of Taipei’s Mass Rapid Transit system, I could participate in student clubs outside school, get internships in enterprises, and join social groups organized by people with disabilities. However, since there was no subway near the campus and accessible buses were not available in Taipei, I could only commute to school and home by taking rehabilitation buses, a special transportation service for people with disabilities in Taiwan. Moreover, the inconvenience of transportation limited my motivation to participate in school club activities and study groups.

MY FUTURE OF INDEPENDENT LIFE? After I graduated from university, I chose to work in a public university. According to the Person with Disabilities Rights Protection Act in Taiwan, public sectors must provide employment quotas and accessible environments. Therefore, working in the public sector could prevent me from encountering problems like having no entrance to the building and having no accessible restroom in the office. The first wage a person earns after entering the workplace represents her independence. However, I noticed that the whole wage I earned in my job almost equaled the payment of employing a foreign care worker. Thus, I still depended on my parents to pay for basic living expenses. Only by doing so can I defray the expense of social life. After participating in many activities held by the NewVitality Independent Living Association, Taipei, I understood independent living notions and began to employ a personal assistance service. Moreover, since I joined in an empowering course, ‘Be myself,’ that was held by The League for Persons with Disabilities, Republic of China, to promote the implementation of the Convention on the Rights of Persons with Disabilities, I realized that individual impairment is not a tragedy, but instead how the social environment and institutions influence a person’s participation in society. By then, I began to think about the relationship between government policies and people with disabilities. This reflection encouraged me to attend a graduate school to investigate disability studies and participate in advocacy. Although the Taiwanese government provides services to people with disabilities, the services are not enough to support persons with high support needs to live independent lives. The Taiwanese government’s services are far fewer than the requirements of people with disabilities in terms of housing, assistive devices, economic safety, personal assistant services, and so on. In recent years, challenged by disability rights organizations, the government has established an independent living support service for people with disabilities. I can receive two to three hours of care from the Long-Term Care (LTC) service through one system and two hours of assistance service from the Independent Living Service. However, I usually need assistance about 16 to 18 hours per day to fulfill my needs in daily life. In other words, the amount of service the Taiwanese government supplies is far less than I need, so I cannot have a truly autonomous and flexible life. Furthermore, the LTC service emphasizes ‘providing care’ rather than ‘developing autonomy’ to people with disabilities, so the service has many limitations. To ensure the autonomy that I need so that I can arrange my life willingly, including going to work, shopping, going to the restroom, etc., my family employ

Narrative 4: The effect of disability policy on lives  185 foreign care workers to assist in my life. However, the government refused my application for any personal assistance because I have personally employed an additional foreign care worker. Although the Taiwanese government has established a respite service in recent years, this service can only supply a few hours. In fact, it is even difficult for the main carer to rest for a full day in a month. As my body condition changes, I cannot afford a full-time job. My economic income is also affected. At the same time, facing the fact that my parents are becoming older, whether my family can afford the expense of employing care workers to assist in my life becomes my main concern. How long can I keep the quality of the life I value right now into the future? Furthermore, my friends with disabilities can only apply for public services because of the shortage of family support. However, their lives are segmented by incomplete services due to the limited hours. Therefore, they cannot arrange independent lives for themselves.

PERSISTING TO ADVOCATE RIGHTS AND CHANGE LIVES Besides my concern for my independent life, as my age and social role increase, I also encountered another new issue. In Taiwan, during the Chinese New Year, elder relatives always ask young people: ‘Where do you work?’ ‘Do you have a partner?’ ‘When would you want to get married?’ However, while I was asked these questions, elder relatives intentionally skipped asking whether I had a partner or got married. This scenario has not only happened to me. Indeed, my many female friends with disabilities have the same experience. In Taiwan, women are expected to become caregivers and take care of partners’ parents, husbands, and children. However, females with disabilities are not recognized as caregivers. Thus, my friends and I further discussed the intersectionality of females and disabilities and particular predicaments faced by women with disabilities in terms of obstetrics and gynecology and menstrual rights. Furthermore, we, a group of females with disabilities and professional expertise, founded the Taiwan Disabled Women’s Alliance for Equal Rights to advocate the issues of reproductive health and parenting in females with disabilities. From graduate school, to advocacy, to communication with the Taiwanese government, I understand the relationship between the historical context of Taiwan’s disability social movement and the changes in my surrounding environments and institutions. This experience encourages me to believe: only when people with disabilities challenge and advocate persistently to change government policies can the rights and lives of people with disabilities be protected.

15. The EU framework of people with disabilities’ rights – an intertemporal equilibrium between regulatory and policy paradigms Gabriel Amitsis and Fotini Marini

INTRODUCTION A key research question within the broader framework of the European Union (EU) Social Policy Agenda is focused on the legal impact of EU initiatives on the living standards of European citizens, particularly those with increased needs or faced with social and economic challenges. This question shall be addressed in our chapter concerning the specific group of people with disabilities, who comprise almost 20% of the EU population (447.7 million in 2020). Despite the lack of disaggregated and comparative national census data about people with disabilities living in the EU, the analysis of European Union Statistics on Income and Living Conditions and European Union Labour Force Survey available data shows that approximately 87 million people have some form of disability in the EU (Grammenos & Priestley, 2020). It is also clear that people with disabilities still face considerable barriers accessing healthcare, education, employment and recreation activities as well as participating in political life (European Disability Forum, 2021). The employment rate of those aged 20–64 stands at 50.6%, compared to 74.8% for people without disabilities (Lecerf, 2020). In addition, 28.7% of people with disabilities are at risk of poverty or social exclusion compared to 19.2% of the general population (Hammersley, 2020). This means that poverty and social exclusion are a reality for just under 29 million people with some form of disability in the EU. Finally, over 50% of people with disabilities reported they were personally discriminated against in 2019 (European Commission, 2019). Taking the challenging balance between the nexus of international versus national law and policy as a starting point, this chapter uses legal and social policy approaches to identify whether and how the current EU framework: (a) creates fundamental rights for people with disabilities; and (b) supports the access of people with disabilities to fundamental rights. The first question will be explored through the institutional analysis of the EU regulatory framework based on primary law (such as the Treaties and the Charter of Fundamental Rights of the European Union) and secondary binding hard law (such as Regulations and Directives). The second question will be scrutinized through discourse analysis and the social policy analysis of EU secondary non-binding soft law methods (including Recommendations, Communications and Resolutions) and supporting tools (including Strategies and Action Plans).

186

The EU framework of people with disabilities’ rights  187

1.

THE EUROPEAN UNION DISABILITY RIGHTS DISCOURSE

Disability policies within the European Union (EU) framework1 are in principle a responsibility of the Member States2 due to the current structure of competences3 of the EU (Broderick & Ferri, 2019), as laid down in the Treaty on the Functioning of the European Union (TFEU). In this national-driven context, governments have developed different agendas of disability policies (Tschanz & Staub, 2017), based on the traditional classification between social protection, labour-market integration and the guarantee of social and civil rights (Van Oorschot & Hvinden, 2001). However, the EU has a strong impact on the situation of people with disabilities in Europe,4 which will be discussed using discourse analysis as a conceptual and research tool (Lynggaard, 2019). This method will identify the existence of disability agendas that occur somewhere above the level of a single word, phrase, sentence, text or conversation between EU bodies and national governments. Put simply, this method allows us to highlight broader social effects and relationships between EU and national disability law than those which can be derived from discourse alone. In this context, we will analyse current EU disability law and policy in the light of the multi-level disability rights discourse, which includes interrelated sections of transnational law, policy, disability and human rights (Lawson & Priestley, 2013). Under this discourse, the EU disability rights framework, as regulated particularly by EU Disability Law (Ferri & Broderick, 2020; Machado & de Lorenzo, 1997), is part of the broader EU context to protect the rights and freedoms of European citizens (Lawson & Gooding, 2005) through a concerted set of legal (binding and non-binding), policy and funding machineries. The EU is committed to supporting democracy and human rights in accordance with its founding principles of liberty, democracy and respect for human rights, fundamental freedoms and the rule of law. It also seeks to mainstream human rights concerns into all of its policies and programmes and has different human rights policy instruments for specific actions including financing specific projects through its funding instruments. The key feature of the EU rights framework is its strong consolidation by primary EU law, as specified particularly in Articles 2, 3 and 6 of the Treaty on European Union (TEU), which states that: 1. The Union recognizes the rights, freedoms and principles set out in the Charter of Fundamental Rights of the European Union of 7 December 2000, as adapted at Strasbourg, on 12 December 2007, which shall have the same legal value as the Treaties. The provisions of the Charter shall not extend in any way the competences of the Union as defined in the Treaties. The rights, freedoms and principles in the Charter shall be interpreted in accordance with the general provisions in Title VII of the Charter governing its interpretation and application and with due regard to the explanations referred to in the Charter, that set out the sources of those provisions. 2. The Union shall accede to the European Convention for the Protection of Human Rights and Fundamental Freedoms. Such accession shall not affect the Union’s competences as defined in the Treaties. 3. Fundamental rights, as guaranteed by the European Convention for the Protection of Human Rights and Fundamental Freedoms and as they result from the constitutional traditions common to the Member States, shall constitute general principles of the Union’s law.

The EU disability rights discourse is not limited to only individual human rights but also encompasses political rights directly enforceable in the courts, both horizontally (between

188  Research handbook on disability policy individuals) and vertically (between the individual and the state), often classified under the EU citizenship regime5 which guarantees for all EU citizens: 1. the right to move and reside freely within the territory of the Member States (Article 21 of the TFEU); 2. the right to vote and to stand as a candidate in elections to the European Parliament and in municipal elections (Article 22(1) of the TFEU) in the Member State in which they reside, under the same conditions as nationals of that State; 3. the right to diplomatic protection in the territory of a third country (non-EU state) by the diplomatic or consular authorities of another Member State, if their own country does not have diplomatic representation there, to the same extent as that provided for nationals of that Member State; 4. the right to petition the European Parliament and the right to apply to the Ombudsman (both Article 24 of the TFEU) appointed by the European Parliament concerning instances of maladministration in the activities of the EU institutions or bodies; 5. the right to write to any EU institution or body in one of the languages of the Member States and to receive a response in the same language (Article 24(4) of the TFEU); 6. the right to access European Parliament, Council and Commission documents, subject to certain conditions (Article 15(3) of the TFEU). The EU disability rights discourse also concerns the protection of social and economic rights (Egan & Chadwick, 2021) of people with disabilities (Blanck & Flynn, 2017), as laid down particularly in the Charter of Fundamental Rights of the European Union (EUCFR) and the European Pillar of Social Rights. In this context, the EU disability rights framework includes all legal (binding and non-binding) mechanisms created6 or applied7 by EU bodies to: (i) promote specific social, political and economic aims in favour of people with disabilities; and (ii) address risks and needs related to disability (Broderick & Ferri, 2019). It is a multi-level institutional fabric developed during the design and implementation of different policy transnational agendas and influenced by the political placement of disability within the broader EU scope of action in critical sectors such as social protection, labour-market integration and civil rights policy (Maschke, 2004).

2.

THE REGULATORY FRAMEWORK OF DISABILITY RIGHTS

The regulation of disability rights in EU law is achieved by both primary and secondary hard law instruments that share a common principle – their binding effect on EU bodies and Member States. There are strong criticisms about the limited scope and impact of these instruments on the real lives of people with disabilities (Sainsbury et al., 2017). However, their implementation so far has created a new international institutional agenda (Lecerf, 2017) that was not the case during the initiatives of the European Economic Community (EEC),8 where no serious reference to disability rights vocabulary and practice was evidenced (Priestley, 2007; Waldschmidt, 2009).

The EU framework of people with disabilities’ rights  189 2.1

The Anti-discrimination Principle

(a) The first EU initiative for the formulation of an integrated disability rights discourse does not concern the context of rights itself but the establishment of a fundamental principle that might improve the universal access of people with disabilities to rights. With immense pressure from non-governmental organizations and associations, the issue of disability was written into the 1997 Treaty of Amsterdam.9 Article 13 stipulates that: 1. Without prejudice to the other provisions of this Treaty and within the limits of the powers conferred by it upon the Community, the Council, acting unanimously on a proposal from the Commission and after consulting the European Parliament, may take appropriate action to combat discrimination based on sex, racial or ethnic origin, religion or belief, disability, age or sexual orientation. 2. By way of derogation from paragraph 1, when the Council adopts Community incentive measures, excluding any harmonization of the laws and regulations of the Member States, to support action taken by the Member States in order to contribute to the achievement of the objectives referred to in paragraph 1, it shall act in accordance with the procedure referred to in Article 251. (b) The same principle was codified within the text of the Charter of Fundamental Rights of the European Union.10 Article 21 stipulates that: 1. Any 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. 2. Within the scope of application of the Treaties and without prejudice to any of their specific provisions, any discrimination on grounds of nationality shall be prohibited. (c) The anti-discrimination principle was further consolidated by a secondary hard law instrument in the form of the Council Directive 2000/78/EC of 27 November 2000 establishing a general framework for equal treatment in employment and occupation.11 The purpose of this Directive is to lay down the institutional framework for combating discrimination on the grounds of religion or belief, disability, age or sexual orientation as regards employment and occupation, with a view to putting into effect in the Member States the principle of equal treatment. Under this Directive, EU citizens and residents with disabilities are protected against discrimination when they work or have work-related training, especially regarding pay and working conditions, and membership in organizations of workers or employers (Waddington & Lawson, 2009). For example, the employer is obliged to provide reasonable accommodation (Ferri & Lawson, 2016). This means that the employer must take measures to adapt the workplace to an employee with disabilities, such as removing physical barriers by installing ramps, facilitating the access of visually impaired employees to information technologies, or altering working times to accommodate the needs of workers with disabilities. Failure to provide reasonable accommodation constitutes discrimination against the disabled employee in question. The implementation of this Directive is monitored by the European Commission and its legal interpretation is subject to the European Court of Justice (ECJ) rulings12 which have developed in many cases (Connor, 2010; Waddington, 2015) a disability-friendly relevant case law.13

190  Research handbook on disability policy 2.2

The Introduction of Selective Rights

The second EU initiative for the formulation of an integrated disability rights discourse concerns the introduction of a selective framework that acknowledges the need for specific positive policies and measures. Article 26 of the Charter of Fundamental Rights of the European Union14 stipulates that ‘[t]he Union recognizes and respects the right of persons with disabilities to benefit from measures designed to ensure their independence, social and occupational integration and participation in the life of the community’.15 This clause opened the way for a multi-disciplinary debate on the socially inclusive aspects of disability policies in Europe, strongly influenced by the broader paradigm of the European Social Inclusion Strategy (Amitsis, 2004). Despite its strong social values-based approach to inclusive disability actions, Article 26 does not guarantee access to a new right, as validated by relevant ECJ rulings.16 Article 26 should be read in conjunction with Article 30, which re-affirms the institutional codification of disability (under the term ‘dependency’) as a specific social insurance risk and social welfare need: 1. The Union recognizes and respects the entitlement to social security benefits and social services providing protection in cases such as maternity, illness, industrial accidents, dependency or old age, and in the case of loss of employment, in accordance with the rules laid down by Union law and national laws and practices.17 2. Everyone residing and moving legally within the European Union is entitled to social security benefits and social advantages in accordance with Union law and national laws and practices. 3. In order to combat social exclusion and poverty, the Union recognizes and respects the right to social and housing assistance so as to ensure a decent existence for all those who lack sufficient resources, in accordance with the rules laid down by Union law and national laws and practices. The use of the dependency (instead of disability) terminology in paragraph 1 does not create any effect particularly for Member States without any general legal framework for the definition of disability (Lecerf, 2017, p. 7). However, it reflects a shift from a human rights-based approach to an impact-focused disability paradigm, subject to open interpretations whether it denotes a stigmatized disadvantage, be it economic, social or physical. The distinction between dependency and disability in EU law is a policy issue strongly influenced by the traditional medical model and the broader social model of disability (Roulstone & Prideaux, 2012): 1. The medical model reflects the dependency approach. It focuses on the person’s medical condition – illness, injury or impairments – which is the direct cause of their disability and may have an impact on their quality of life. A medical intervention may be necessary to diagnose and treat the disability and/or to maintain or increase the person’s abilities. 2. The social model reflects the disability approach, as it focuses on the barriers created by society. Those may be physical or social restrictions which prevent the abilities – physical, social or professional – which each individual needs to thrive.

The EU framework of people with disabilities’ rights  191 2.3

Access to the Universal Rights Regime

The third EU initiative for the formulation of an integrated disability rights discourse concerns the access of people with disabilities to the universal rights regime, the UN Convention on the Rights of Persons with Disabilities (UNCRPD).18 This is the first international human rights Convention ratified by the EU,19 which entered into force on 21 January 2011 in accordance with Council Decision 2010/48/EC of 26 November 2009. The UNCRPD reflects a human rights-based paradigm of disability (Degener, 2017); it forms an integral part of EU law, and in hierarchical terms it is inferior to primary law but superior to secondary law.20 The Council Decision concerning the conclusion by the EU of the UNCRPD21 declared the extent of EU competences with respect to the matters governed by the Convention and a secondary legislation was identified and listed in a declaration in the Annex to illustrate the extent of the area of EU competence. The Decision explains that the scope and the exercise of EU competence are, by their nature, subject to continuous development and that the EU will complete or amend the declaration, if necessary, in accordance with Article 44(1) of the UNCRPD. EU bodies used the UNCRPD during the 2010s as a monitoring instrument of both EU (Anglmayer, 2020; Degener, 2020) and national disability policies. The European Commission has provided the UN Committee on the rights of persons with disabilities: 1. the first Report on the EU’s application of the Convention (June 2014); 2. a response to UN review of the EU’s implementation of the Convention (June 2015); 3. a response to the UN Committee’s more urgent recommendations, and follow-up on the adoption of the European Accessibility Act, the Commission’s withdrawal from the EU Framework endorsed by the Council in 2012, and the update of the list of EU legal acts related to disability (January 2017).

3.

THE POLICY FRAMEWORK OF DISABILITY RIGHTS

The development of disability rights in EU law is promoted also by secondary soft law instruments without any binding effect on EU bodies and Member States. These instruments not only provide policy guidance to Member States and influence cultural values (Waldschmidt, 2009), but they also may legitimize the adoption and revision of secondary hard law instruments on the initiative of the European Commission. 3.1

The Community Charter of the Fundamental Social Rights of Workers

The first initiative for the formulation of a disability rights policy framework goes back to the years of the European Economic Community (EEC), under the form of the Community Charter of the Fundamental Social Rights of Workers.22 The Charter was adopted on 9 December 1989 in accordance with the Preamble of the Treaty establishing the European Economic Community by a Declaration of all Member States, with the exception of the United Kingdom (UK). The Charter shaped the development of the European Social Model during the 1990s through the implementation of a Social Action Programme,23 which produced a number of binding and non-binding instruments in the fields of working conditions, employment and social policy.

192  Research handbook on disability policy Article 26 of the Charter stipulates that: All disabled persons, whatever the origin and nature of their disablement, must be entitled to additional concrete measures aimed at improving their social and professional integration. These measures must concern, in particular, according to the capacities of the beneficiaries, vocational training, ergonomics, accessibility, mobility, means of transport and housing.

The legal status of the Charter is that of a mere political declaration as stated in its Preamble, since, due to the opposition of the UK Government, the Charter could not be integrated into the EC Treaty in 1989. Nonetheless, the Preamble to the Treaty on European Union confirms the Member States’ ‘attachment to fundamental social rights as defined in the 1989 Community Charter’. Article 151 of the Social Charter of the TFEU states that ‘[t]he Union and the Member States [have] in mind fundamental social rights such as those set out… in the 1989 Community Charter of the Fundamental Social Rights of Workers…’ As such, the Charter may be used by the European Court of Justice as an interpretative guide in litigation concerned with the protection of social rights of people with disabilities. Such litigation could take the form of legal action by way of preliminary references by national courts (Article 267 TFEU) challenging Member States’ implementation of Union law, which arguably violates the fundamental social rights of workers in the Charter. 3.2

The First European Disability Strategy

The first European Disability Strategy was only adopted in 1996 by the European Commission under a non-binding Communication entitled Equality of Opportunity for People with Disabilities – A New Community Disability Strategy 1996.24 It was based, above all, on the UN’s Standard Rules on the Equalization of Opportunities for Persons with Disabilities of 1993,25 and introduced a human rights-based paradigm to disability as laid down in section 7 of the introductory text: This Communication aims at giving a renewed impetus towards the rights-based equal opportunities approach to disability, both in the Member States, and at the level of the Community. The common task is one of valuing, and making space for human diversity. This is everyone’s business in a People’s Europe that values fairness as well as efficiency.

The policy impact of this Communication was very strong, given that the European Commission declared for the first time that it is essential for the European Community to clarify and confirm its overall disability strategy, the core of which should be a shared commitment by all Member States to promote equal opportunities, to eliminate discrimination in this field and to recognize the rights of people with disabilities. To this end, the Commission proposed the adoption of a Resolution on Equality of Opportunity by the Council and the Representatives of the Governments of the Member States meeting within the Council. This Resolution was finally adopted on 20 December 199626 and called on Member States: ● To consider if relevant national policies take into account, in particular, the following orientations: ● empowering people with disabilities for participation in society, including severely disabled people, while paying due attention to the needs and interests of their families

The EU framework of people with disabilities’ rights  193 and carers; ● mainstreaming the disability perspective into all relevant sectors of policy formulation; ● enabling people with disabilities to participate fully in society by removing barriers; ● nurturing public opinion to be receptive to the abilities of people with disabilities and towards strategies based on equal opportunities. ● To promote the involvement of representatives of people with disabilities in the implementation and follow-up of relevant policies and actions in their favour. The Resolution has been used as a reference framework for the structured exchange of useful information between the Member States; as a platform to stimulate the clarification of common goals and the identification of best practices; and as a guide for the development and assessment of appropriate measures within the Member States and the Community’s own respective spheres of action. 3.3

The Second European Disability Strategy

The second European Disability Strategy was adopted in 2000 by the European Commission under a non-binding Communication entitled Towards a Barrier-Free Europe for People with Disabilities.27 This Strategy aimed to reinforce its rights-based approach to disability by outlining approaches and key actions to promote a greater inclusiveness of European Union policy. The focus of this Communication rested primarily upon EU policies that were considered critical for the successful removal of ‘access barriers’ to people with disabilities. As such, it placed particular emphasis upon the achievement of a greater synergy between related issues in the fields of employment, education and vocational training, transport, the internal market, information society, new technologies and consumer policy. 3.4

The Third European Disability Strategy

The third European Disability Strategy was adopted in 2010 by the European Commission under a non-binding Communication entitled European Disability Strategy 2010–2020: A Renewed Commitment to a Barrier-Free Europe.28 This Strategy aimed to empower people with disabilities so that they could enjoy their full rights, and benefit from participating in society and in the European economy, notably through the Single Market. The key objective of the Strategy was to eliminate barriers that bring into question the economic and social participation of people with disabilities in the EU and national context. In this respect, the Commission has identified eight main areas for action: Accessibility; Participation; Equality; Employment; Education and Training; Social Protection; Health; and External Action. Specific EU-level actions were devised for each of the eight areas for action and the implementation instruments (the actions were described in a ‘list of actions’29 published in the Annex to the Strategy). In order to comply with the principle of conferral and with the obligation for the EU to only act within the limits of its competences, the Strategy was issued in the form of a Communication. This was so that its content, although binding for the Commission, did not directly commit other EU policy makers or the Member States. Member States were obliged to follow up on the Strategy’s actions only when those actions had a binding nature.

194  Research handbook on disability policy The ten-year evaluation of the Strategy was published by the Commission in November 2020.30 The evaluation shows that while there is room for improvement, the Strategy had a positive impact on EU rules and policies.31 A good example of its positive impact is the inclusion of disability issues in EU legislation and policy, with the design, adoption or revision of secondary hard law instruments such as the: 1. 2. 3. 4. 5. 6. 7.

European Accessibility Act32 Web-Accessibility Directive33 Audiovisual Media Services Directive34 European Electronic Communications Code35 Waterborne and Bus and Coach Passenger Rights Regulations36 Revision of the Rail Passengers’ Rights Regulation37 Revision of the Commission Regulation on the technical specifications for interoperability relating to accessibility of the Union’s rail system38 8. ‘Marrakesh’ Directive.39 In addition, the evaluation confirmed that not all eight areas for action were implemented in a balanced way. Most problems were identified in the area of equality. The evaluation suggested that the ambitious formulation of its objective, the non-adoption of the Equal Treatment Directive40 and the limited scope of the remaining actions led to partial achievements in eradicating discrimination based on disability in the EU. 3.5

The European Pillar of Social Rights

In 2017, the European Parliament, the Council and the European Commission jointly proclaimed the European Pillar of Social Rights41 at the Gothenburg Summit, an overall policy framework meant to achieve better working and living conditions in the EU. It sets out 20 key principles42 which represent the beacon guiding towards a strong social Europe that is fair, inclusive and full of opportunity in the 21st century. The Pillar allows for a better degree of coordination, integration and improvement of social policies across the EU. Its three core themes – equal opportunities and access to the labour market, fair working conditions and social protection and inclusion – are all relevant to people with disabilities and each area raises important questions about disability rights (Waddington & Priestley, 2018). The Pillar specifically recognizes the right of people with disabilities to social inclusion as laid down in Principle No. 17 – Inclusion of people with disabilities: ‘People with disabilities have the right to income support that ensures living in dignity, services that enable them to participate in the labour market and in society, and a work environment adapted to their needs.’ In addition, it reaffirms the supremacy of the anti-discrimination principle as laid down in Principle No. 3 – Equal opportunities: ‘Regardless of gender, racial or ethnic origin, religion or belief, disability, age or sexual orientation, everyone has the right to equal treatment and opportunities regarding employment, social protection, education, and access to goods and services available to the public. Equal opportunities of under-represented groups shall be fostered.’ The European Commission has proposed disability-related legislation to advance with the implementation of the European Pillar of Social Rights. This includes a Directive on work–life balance,43 setting new and improving existing leave rights for parents and carers, and a Council

The EU framework of people with disabilities’ rights  195 Recommendation on access to social protection for workers and the self-employed44 that also covers disability and invalidity benefits. In March 2021, it published the European Pillar of Social Rights Action Plan45 which sets out concrete initiatives to achieve the 20 Principles through a joint effort by EU institutions, national, regional and local authorities, social partners and civil society actors. 3.6

The Fourth European Disability Strategy

The fourth European Disability Strategy was adopted in 2020 by the European Commission under a non-binding Communication entitled Union of Equality: Strategy for the Rights of Persons with Disabilities 2021–2030.46 The Strategy aimed to improve the lives of people with disabilities between 2021 and 2030. The Strategy takes account of the diversity of disability, resulting from the interaction of long-term physical, mental, intellectual or sensory impairments, which are often invisible, with barriers in the environment, as well as the increased prevalence of disabilities with age, with almost half of persons aged above 65 reporting some form of disability. The ten-year Strategy sets out key initiatives around three main themes (Waddington & Broderick, 2020): 1. EU rights: People with disabilities have the same right as other EU citizens to move to another country or to participate in political life. Building on the experience of a relevant pilot project ongoing in eight countries, by the end of 2023 the European Commission will propose a European Disability Card for all EU countries that will facilitate mutual recognition of disability status between Member States, helping people enjoy their right of free movement. 2. Independent living and autonomy: People with disabilities have the right to live independently and choose where and with whom they want to live. To support independent living and inclusion in the community, the Commission will develop guidance and launch an initiative to improve social services for people with disabilities. 3. Non-discrimination and equal opportunities: The Strategy aims to protect people with disabilities from any form of discrimination and violence. It aims to ensure equal opportunities in and access to justice, education, culture, sport and tourism. Equal access must also be guaranteed to all health services and employment.

CONCLUSION The regulation, administration and funding of disability policies is in principle a responsibility of the ΕU Member States. However, due to the current structure of competences in the EU legal order EU bodies (particularly the European Parliament and the European Commission through its Directorate General for Employment, Social Affairs and Inclusion) have taken a strong position to support the active participation of people with disabilities in society and the economy. The EU has adopted, and applies as part of its shared and supportive competences, a disability rights framework, which does not create new rights but only supports access to rights established by UN and national law. This framework is promoted by a complex set of (binding and non-binding) legal instruments and supported by funding machineries (the

196  Research handbook on disability policy European Investment and Structural Funds) particularly through the Cohesion Policy (Van Lierop, 2017). In some disability policy areas, the EU shares competence with Member States such as transport or the internal market. In other relevant areas, such as health, education, social inclusion and culture, the main competence remains with the Member States and the EU has a supportive role. Therefore, it remains the primary responsibility of Member States to design their national disability policies. These policies are to be in line with their obligations to implement the UNCRPD and in line with applicable EU rules as specified within primary (Treaties and the Charter of Fundamental Rights of the European Union) and secondary hard law machineries (more than 15 Regulations and Directives). In addition, EU bodies have introduced a rich set of supportive policies in the form of secondary soft law instruments without any binding effect on Member States. These instruments not only provide policy guidance to Member States, but they also may legitimize the adoption and revision of secondary hard law instruments on the initiative of the European Commission. In this context, the current EU framework reflects a complex social rights discourse in favour of people with disabilities, subject to implementation by national legislation and practice. EU bodies and national governments are still struggling to find a proper balance between hard and soft law instruments to support the effective access of people with disabilities to fundamental rights.

NOTES 1.

2.

3.

4.

5.

Start of endnote. The EU is an international, regional-based organization which promotes common economic, social and security policies. It was established by the Maastricht Treaty, entered into force on 1 November 1993. The Treaty was designed to enhance European political and economic integration by creating a single currency (the euro), a unified foreign and security policy, and common citizenship rights and by advancing cooperation in the areas of immigration, asylum and judicial affairs. End of endnote. Start of endnote. The EU currently counts 27 countries: Austria; Belgium; Bulgaria; Croatia; Republic of Cyprus; Czech Republic; Denmark; Estonia; Finland; France; Germany; Greece; Hungary; Ireland; Italy; Latvia; Lithuania; Luxembourg; Malta; the Netherlands; Poland; Portugal; Romania; Slovakia; Slovenia; Spain; and Sweden. The United Kingdom withdrew from the EU on 31 January 2020. End of endnote. Start of endnote. The competences of the EU are divided into three categories: (a) the EU has exclusive competence (Article 3 TFEU) – only the EU can act; (b) competences are shared between the EU and the Member States (Article 4 TFEU) – Member States can act only if the EU has chosen not to; and (c) the EU has competence to support, coordinate or supplement the actions of the Member States (Article 6 TFEU) – in these areas the EU may not adopt legally binding acts that require the Member States to harmonize their laws and regulations. End of endnote. Start of endnote. There is no European Union (EU) definition of ‘disability’, and definitions vary from one Member State to another, and even within single Member States. Nevertheless, since the UN Convention on the Rights of Persons with Disabilities (UNCRPD) was signed by both the EU and its Member States, the definition provided by the UN has become the common reference. End of endnote. Start of endnote. Under Article 9 of the TEU and Article 20 of the TFEU, every person holding the nationality of a Member State is a citizen of the Union. Nationality is defined according to the national laws of that State. Citizenship of the Union is complementary to, but does not replace, national citizenship. EU citizenship comprises a number of rights and duties in addition to those stemming from citizenship of a Member State. End of endnote.

The EU framework of people with disabilities’ rights  197 6.

7.

8.

9.

10.

11. 12.

13.

Start of endnote. Under Article 288 of TFEU, to exercise the Union’s competences, the EU institutions shall adopt not only hard law (Regulations, Directives, Decisions) but also soft law (Recommendations and Opinions): A Regulation shall have general application. It shall be binding in its entirety and directly applicable in all Member States. A Directive shall be binding, as to the result to be achieved, upon each Member State to which it is addressed, but shall leave to the national authorities the choice of form and methods. A Decision shall be binding in its entirety. A decision which specifies those to whom it is addressed shall be binding only on them. Recommendations and Opinions shall have no binding force. End of endnote. Start of endnote. This is the case of the UN Convention on the Rights of Persons with Disabilities (UNCRPD), which entered into force on 21 January 2011, in accordance with Council Decision 2010/48/EC of 26 November 2009 concerning the conclusion, by the European Community, of the United Nations Convention on the Rights of Persons with Disabilities. On the contrary, EU is not yet part of the Council of Europe European Convention for the Protection of Human Rights and Fundamental Freedoms (ECHR), the leading instrument for the protection of fundamental rights in Europe, to which all EU Member States have acceded. End of endnote. Start of endnote. The European Economic Community (EEC) was a regional organization that aimed to bring about economic integration among its Member States. It was created by the Treaty of Rome of 1957. Upon the formation of the European Union in 1993, the EEC was incorporated into the EU and renamed the European Community (EC). In 2009, the EC formally ceased to exist and its institutions were directly absorbed by the EU. This made the Union the formal successor institution of the Community. End of endnote. Start of endnote. The Treaty of Amsterdam, officially the Treaty of Amsterdam amending the Treaty on European Union, the Treaties establishing the European Communities and certain related acts, was signed on 2 October 1997, and entered into force on 1 May 1999; it made substantial changes to the Treaty of Maastricht, which had been signed in 1992. End of endnote. Start of endnote. The Charter was solemnly proclaimed by Parliament, the Council and the Commission in Nice in 2000. After being amended, it was proclaimed again in 2007. However, only with the adoption of the Treaty of Lisbon on 1 December 2009 did the Charter come into direct effect, as provided for by Article 6(1) TEU, thereby becoming a binding source of primary law. The Charter, although based on the European Convention for the Protection of Human Rights (ECHR) and other European and international instruments, was innovative in various ways, notably since it includes, among other issues, disability, age and sexual orientation as prohibited grounds of discrimination, and enshrines access to documents, data protection and good administration among the fundamental rights it affirms. End of endnote. Start of endnote. See: EUR-Lex - 32000L0078 - EN - EUR-Lex (europa.eu). End of endnote. Start of endnote. The ECJ gives rulings on cases brought before it. The most common types of case are: (a) Interpreting EU legislation (preliminary rulings). In this case, national courts of EU countries are required to ensure EU law is properly applied, but courts in different countries might interpret it differently. If a national court is in doubt about the interpretation or validity of an EU law, it can ask the Court for clarification. The same mechanism can be used to determine whether a national law or practice is compatible with EU law. (b) Enforcing EU legislation (infringement proceedings). This type of case is taken against a national government for failing to comply with EU law and may be started by the European Commission or another EU country. If the country is found to be at fault, it must put things right at once, or risk a second case being brought, which may result in a fine. End of endnote. Start of endnote. The Court decided in the CJEU - C 303/06 Case ‘S. Coleman v Attridge Law and Steve Law’ that Directive 2000/78, and, in particular, Articles 1 and 2(1) and (3) thereof, must be interpreted as meaning that the prohibition of harassment laid down by those provisions is not limited only to people who are themselves disabled. Under Article 2(3), harassment is deemed to be a form of discrimination within the meaning of Article 2(1) and the principle of equal treatment enshrined in that Directive in the area of employment and occupation applies not to a particular category of person but by reference to the grounds mentioned in Article 1.

198  Research handbook on disability policy

The EU framework of people with disabilities’ rights  199

32. 33. 34.

35. 36.

37.

38.

39.

40.

41. 42.

the findings of the evaluation process show that 101 actions of the Strategy (67% of total) were fully implemented throughout the whole implementation period. Forty actions (27% of total) were partially implemented and 9 actions (6% of total) were not implemented. End of endnote. Start of endnote. Directive (EU) 2019/882 of the European Parliament and of the Council of 17 April 2019 on the accessibility requirements for products and services, https:// eur -lex .europa .eu/ legal-content/EN/TXT/?uri=CELEX%3A32019L0882. End of endnote. Start of endnote. Directive (EU) 2016/2102 of the European Parliament and of the Council of 26 October 2016 on the accessibility of the websites and mobile applications of public sector bodies, https://eur-lex.europa.eu/eli/dir/2016/2102/oj. End of endnote. Start of endnote. Directive (EU) 2018/1808 of the European Parliament and of the Council of 14 November 2018 amending Directive 2010/13/EU on the coordination of certain provisions laid down by law, regulation or administrative action in Member States concerning the provision of audiovisual media services (Audiovisual Media Services Directive) in view of changing market realities, https://eur-lex.europa.eu/eli/dir/2018/1808/oj. End of endnote. Start of endnote. Directive (EU) 2018/1972 of the European Parliament and of the Council of 11 December 2018 establishing the European Electronic Communications Code (Recast), https:// eur -lex.europa.eu/eli/dir/2018/1972/oj. End of endnote. Start of endnote. Regulation (EU) No. 1177/2010 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, https:// eur -lex .europa .eu/ legal -content/ EN/ ALL/ ?uri=CELEX%3A32010R1177; 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, https:// eur -lex .europa .eu/ legal -content/ EN/ ALL/ ?uri = celex:32011R0181. End of endnote. Start of endnote. The European Parliament adopted on 29 April 2021 the revised Regulation (EC) No. 1371/2007 of the European Parliament and of the Council of 23 October 2007 on rail passengers’ rights and obligations, EUR-Lex - 32007R1371 - EN - EUR-Lex (europa.eu). This means that the Regulation will soon be officially published in the Official Journal of the EU and enter into force in May 2023. End of endnote. Start of endnote. Commission Regulation (EU) No. 1300/2014 of 18 November 2014 on the technical specifications for interoperability relating to accessibility of the Union’s rail system for people with disability and people with reduced mobility, https://eur-lex.europa.eu/legal-content/EN/TXT/ ?uri=uriserv%3AOJ.L_.2014.356.01.0110.01.ENG. End of endnote. Start of endnote. Directive (EU) 2017/1564 on certain permitted uses of certain works and other subject matter protected by copyright and related rights for the benefit of persons who are blind, visually impaired or otherwise print-disabled, https:// eur -lex .europa .eu/ eli/ dir/ 2017/ 1564/ oj. The Directive is implementing the Marrakesh Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired, or Otherwise Print Disabled, which aims to facilitate access to print works in formats adapted for persons who are blind, visually impaired or otherwise print disabled. The Marrakesh Treaty, to which the EU is party, is an international copyright Treaty administered by the World Intellectual Property Organization (WIPO). End of endnote. Start of endnote. A key action of the Strategy under this area was to ‘Support the negotiation in Council of the draft Directive on equal treatment beyond the field of employment’. In 2008, the Commission presented a proposal for a horizontal Directive on equal treatment (Equal Treatment Directive), but the proposal has since then been blocked in the Council because the required unanimity has not been reached so far. As a result, despite being partially implemented, the action did not lead to the expected results and the non-adoption of the Equal Treatment Directive has left a significant legal gap in terms of protection from disability-based discrimination. End of endnote. Start of endnote. See: https:// commission .europa .eu/ strategy -and -policy/ priorities -2019 -2024/ economy -works -people/ jobs -growth -and -investment/ european -pillar -social -rights _en. End of endnote. Start of endnote. See: https:// commission .europa .eu/ strategy -and -policy/ priorities -2019 -2024/ economy -works -people/ jobs -growth -and -investment/ european -pillar -social -rights/ european -pillar -social-rights-20-principles_en. End of endnote. ​ ​ ​ ​

200  Research handbook on disability policy 43. Start of endnote. Directive (EU) 2019/1158 of the European Parliament and of the Council of 20 June 2019 on work–life balance for parents and carers and repealing Council Directive 2010/18/EU, https:// eur -lex .europa .eu/ legal -content/ EN/ TXT/ ?uri = uriserv: OJ .L _ .2019 .188 .01 .0079 .01 .ENG. End of endnote. 44. Start of endnote. Council Recommendation of 8 November 2019 on access to social protection for workers and the self-employed 2019/C 387/01 ST/12753/2019/INIT, https://eur-lex.europa.eu/legal -content/EN/TXT/?uri=uriserv:OJ.C_.2019.387.01.0001.01.ENG&toc=OJ:C:2019:387:TOC. End of endnote. 45. Start of endnote. See: https://www.google.com/search?client=firefox-b-d&q=european+pillar+of+ social+rights+action+plan. End of endnote. 46. Start of endnote. See: https:// eur -lex .europa .eu/ legal -content/ en/ TXT/ ?uri = COM: 2021: 101: FIN. End of endnote.

REFERENCES Amitsis, G. (2004). Principles and instruments of social inclusion policies in Europe. In T. Sakellaropoulos & J. Berghman (Eds.), Connecting welfare diversity within the European social model (pp. 139–188). Intersentia. Anglmayer, I. (2020). Implementation of the Employment Equality Directive in light of the UN CRPD. European Parliamentary Research Service, European Parliament. https://www.europarl.europa.eu/ RegData/etudes/STUD/2020/654206/EPRS_STU(2020)654206_EN.pdf ​ ​ ​ ​ ​ ​ ​ ​ Blanck, P., & Flynn, E. (Eds.). (2017). Routledge handbook of disability law and human rights. Routledge. Broderick, A., & Ferri, D. (Eds.). (2019). International and European disability law and policy: Text, cases and materials (law in context). Cambridge University Press. Connor, T. (2010). Discrimination by association: A step in the right direction: Case C-303/06 Coleman v. Attridge Law and Steve Law, Judgment of the ECJ 17 July 2008. Journal of Social Welfare and Family Law, 32(1), 59–69. https://doi.org/10.1080/09649061003675881 ​ ​ ​ ​ ​ Degener, T. (2017). A new human rights model of disability. In V. Della Fina, R. Cera, & G. Palmisano (Eds.), The United Nations Convention on the Rights of Persons with Disabilities: A commentary (pp. 41–59). Springer. Degener, T. (2020). The impact of the UN Convention on the Rights of Persons with Disabilities on EU anti-discrimination law. In T. Giegerich (Ed.), The European Union as protector and promoter of equality (pp. 349–362). Springer. Egan, S., & Chadwick, A. (Eds.). (2021). Poverty and human rights: Multidisciplinary perspectives. Edward Elgar Publishing. European Commission. (2019). Special Eurobarometer 493: Discrimination in the EU (including LGBTI). Directorate-General for Communication. European Disability Forum. (2021). Nothing about us without us: EDF Annual Report 2020. https://www ​ ​ .edf-feph.org/content/uploads/2021/05/EDF-Annual-Report-2020_70621_accessible-1.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Ferri, D., & Broderick, A. (Eds.). (2020). Research handbook on EU disability law. Edward Elgar Publishing. Ferri, D., & Lawson, A. (2016). Reasonable accommodation for disabled people in employment: A legal analysis of the situation in EU Member States, Iceland, Liechtenstein and Norway. European Commission. Grammenos, S., & Priestley, M. (2020). Statistics on persons with disabilities 2018. The Academic Network of European Disability Experts. https://www.disability-europe.net/theme/eu2020?country= ​ ​ ​ ​ ​ ​ ​ ​ ​ european-union. ​ Hammersley, H. (2020). Poverty and social exclusion of persons with disabilities. European Human Rights Report Issue 4. European Disability Forum. https://www.disabilityrightsuk.org/sites/default/ files/pdf/EDFreport.pdf ​ ​ ​ Lawson, A., & Gooding, C. (Eds.). (2005). Disability rights in Europe: From theory to practice. Bloomsbury Publishing.

The EU framework of people with disabilities’ rights  201 Lawson, A., & Priestley, M. (2013). Potential, principle and pragmatism in concurrent multinational monitoring: Disability rights in the European Union. The International Journal of Human Rights, 17(7–8), 739–757. https://doi.org/10.1080/13642987.2013.834494 ​ ​ ​ ​ ​ ​ ​ Lecerf, M. (2017). European disability policy: From defining disability to adopting strategy. European Parliament. https://www.europarl.europa.eu/thinktank/en/document/EPRS_IDA(2017)603981 ​ ​ ​ ​ ​ ​ ​ ​ ​ Lecerf, M. (2020). Employment and disability in the European Union. European Parliament. https:// www.europarl.europa.eu/RegData/etudes/BRIE/2020/651932/EPRS_BRI(2020)651932_EN.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Lynggaard, K. (2019). Discourse analysis and European Union politics. Palgrave Macmillan. Machado, S. M., & de Lorenzo, R. (Eds.). (1997). European disability law. Escuela Libre Editorial. Maschke, M. (2004). Behinderung als Feld wohlfahrtsstaatlicher Politik: Eine Systematisierung der Behindertenpolitik. Berliner Journal für Soziologie, 14(3), 399–420. Priestley, M. (2007). In search of European disability policy: Between national and global. ALTER, European Journal of Disability Research, 1(1), 61–74. https://doi.org/10.1016/j.alter.2007.08.006 ​ ​ ​ ​ ​​ ​ ​ ​ Roulstone, A., & Prideaux, S. (2012). Understanding disability policy. Policy Press. Sainsbury, R., Lawson, A., & Priestley, M. (2017). Social protection for disabled people in Europe: Synthesis report. Academic Network of European Disability Experts. Tschanz, C., & Staub, I. (2017). Disability-policy models in European welfare regimes: Comparing the distribution of social protection, labour-market integration and civil rights. Disability & Society, 32(8), 1199–1215. https://doi.org/10.1080/09687599.2017.1344826 ​ ​ ​ ​ ​ ​ ​ Van Lierop, C. (2017). Cohesion policy and disability. European Parliament. Van Oorschot, W., & Hvinden, B. (Eds.). (2001). Disability policies in European countries. Kluwer Law International. Waddington, L. (2015). Saying all the right things and still getting it wrong: The Court of Justice’s definition of disability and non-discrimination law. Maastricht Journal of European and Comparative Law, 22(4), 576–591. Waddington, L., & Broderick, A. (2020). The post-2020 European disability strategy. European Parliament. Waddington, L., & Lawson, A. (2009). Disability and non-discrimination law in the European Union: An analysis of disability discrimination law within and beyond the employment field. European Commission. Waddington, L., & Priestley, M. (2018). Mainstreaming disability rights in the European Pillar of Social Rights – A compendium. Academic Network of European Disability Experts. Waldschmidt, A. (2009). Disability policy of the European Union: The supranational level. ALTER, European Journal of Disability Research, 3(1), 8–23. https://doi.org/10.1016/j.alter.2008.12.002 ​ ​ ​ ​ ​​ ​ ​ ​

16. The influence of disability models in Indonesian past and present: disability rights law-making and policy-making Abi Marutama, Antoni Tsaputra and Lengga Pradipta

1. INTRODUCTION Historical accounts suggest that the Soeharto administration introduced the Handicapped Act of 1997 as Indonesia’s first disability law. Although the Act was originally intended to protect and fulfil the rights of Indonesians with disabilities, its provisions did not adequately provide disability rights protection; instead, the Act only required the government to provide medical and social rehabilitation as well as social welfare aid (Ndaumanu, 2020). Fourteen years after its enactment, the legislation and its implementing policies came under severe censure for failing to enable Indonesians with disabilities’ full enjoyment of human rights. In response to critiques from Indonesian disability rights activists, in 2011 the Indonesian Government ratified the Convention on the Rights of Persons with Disabilities (CRPD). The CRPD seeks to shift the general public and policy makers’ paradigm to design policies in which people with disabilities are rights holders (Degener, 2016b). The CRPD ratification led Indonesians with disabilities and the National Commission on Human Rights to resist the application of the Handicapped Act, which constructed disability as a medical problem, and build a campaign around the notion that such understanding was socially constructed and perpetuated by the Act. They successfully proposed the Indonesians with Disability Bill which was then passed as the Indonesians with Disability Act Number 8 of 2016 (IDA) by Indonesia’s House of Representatives (Nainggolan et al., 2016). The IDA, which adopts human rights principles and provisions enshrined in the CRPD (Widyantini, 2018), provides clear guidance for the government to implement disability rights, based on human rights principles. Its implementation, however, is far from what the House of Representatives intended because many of its implementing policies contradict the statute, and subsequently induce serious legal implications and disability rights violations. This chapter specifically explores how disability conceptualizations have influenced the formulation of the Handicapped Act and the IDA, which was intended to respect, protect, and fulfil the rights of Indonesians with disabilities. Additionally, it also examines how the government’s implementing regulations unlawfully contradict both Acts resulting in the violation of the rights of Indonesians with disabilities.

202

The influence of disability models in Indonesian past and present  203

2.

METHODOLOGY: DOCTRINAL LEGAL METHOD AND HISTORICAL APPROACH

In analysing findings, the chapter uses the doctrinal legal method which only examines law as its research object without considering other aspects. It uniquely examines ‘legal concepts and principles of all types-cases, statutes and rules’ (Hutchinson & Duncan, 2012, p. 84). Theoretically, the term ‘doctrinal’ is associated with the doctrine of precedent in which the law is passed from past generations and applied consistently, as well as evolving gradually and organically in society (Gawas, 2017). The doctrinal legal method focuses its research ‘in law’. It analyses the development of theories and concepts of law including but not limited to the legislative process, statutory interpretation, legislative intent, legal institution, and regulatory process. In examining law concepts and theories as mentioned in the doctrinal legal method, one may use the historical approach. In legal research, the historical approach plays an important role to discover ‘the root of any legal conception or institution which has a history that shows how it has evolved and also reveals chinks that may have developed with the passage of time’ (Pathak, 2019, p. 1). The historical approach allows legal scholars to understand how the law develops gradually over time. This approach can be used to discover the legal reasons used by law makers and the judiciary institution to overturn an old law and amend it with a new one. This approach can also be used to learn how a government exercises its executive authority to issue policies and implementing regulations to implement statutes, and whether they comply with legislative intent reflected in the statutory text. By using the doctrinal legal method with the historical approach, we may understand how the Indonesian legislators’ disability conceptualization shifted from the medical model to the social and human rights models of disability which led them to supersede the Handicapped Act with the IDA. This is important because the models of disability transform into legal norms and principles once they are adopted into both Acts, and they give the Indonesian Government the legal authority and responsibility to implement disability rights recognized under the statutes and to comply with them. In order to establish historical legal facts and statutory interpretation, we examine primary and secondary historical sources such as bills, statutes, academic documents, legislative reports, published and unpublished testimonies and opinions from people with disabilities and experts, as well as minutes of legislative meetings that describe how the Handicapped Act and the IDA were enacted.

3.

HISTORY OF DISABILITY MODELS

For many years scholars have introduced disability theories and concepts to understand ‘disability’. Among them are medical, social, and human rights models of disability. Understanding disability models will provide a valuable insight and an overview of characteristics, attitudes, concepts, and prejudice possessed by groups in society that still have limited perspectives about disability issues (Finkelstein, 1990). In this context, we try to understand each model and how they would fit and be applicable to Indonesian policy-making processes to create inclusive regulations for Indonesians with disabilities. The medical model of disability is the first model that focuses on individuals’ impairment. This model contends that people’s autonomy is limited because of the impairment they suffer

204  Research handbook on disability policy from, and they should be medically fixed first, so that they can participate in social activities (Bunbury, 2019). In this sense, it only acknowledges disability as a public health problem induced by impairment and ignores other aspects such as social and economic problems faced by people with disabilities. The medical model of disability in the Global North then influenced how disability was conceptualized in Indonesia, and this also affected how disability policies were made. We can understand how it was understood by policy makers and legislators from the use of several negative terms they introduced to the public. For instance, during the Old Order Era (1945–1966) and the New Order Era (1966–1998), Indonesia used a variety of terms to refer to people with disabilities. Some of the terms used were penyandang cacat (people with defects), penderita cacat (people suffering from defects), bercacat (having defects), kekurangan jasmani dan rohani (physically and mentally deprived), and penyandang kelainan (people with abnormalities) (Suharto et al., 2016). It is believed that the Indonesian Government’s use of these terms was influenced by the Dutch Colonial Government’s adoption of the medical model of disability, political changes, and scholars’ attitudes towards disability. Suharso, an Indonesian graduate of the Dutch School of Medicine for Indigenous Peoples who later served as Minister of Health in the 1950s, pioneered the medical model of disability in Indonesia from 1947 to 1954. During his career he established a rehabilitation centre for people with disabilities in Solo as well as a prosthetic centre for people with physical disabilities. With the government’s ongoing financial support, this eventually grew into Indonesia’s largest rehabilitation centre. Aside from the rehabilitation centre, a special school for children with disabilities, known as Sekolah Luar Biasa, was established. This school was one of the first segregated schools for children with disabilities based on the types of impairment they had (Tsaputra, 2019). The approach used by Soeharto eventually created social segregation between people with and without disability, instead of social inclusion. As the medical model failed to accommodate people with disabilities’ access to human rights, the Union of the Physically Impaired against Segregation (UPIAS) introduced a new social definition of disability. UPIAS viewed disability as a disabling aspect of society that could be the source of discrimination, and defined disability as ‘the disadvantage or restriction of activity caused by a contemporary social organisation which takes no or little account of people who have physical impairment, and thus excludes them from participation in the social activities’. Disability can also be defined as a particular form of social oppression (The Union of the Physically Impaired Against Segregation (UPIAS) & the Disability Alliance, 1976, p. 14). Following that, Mike Oliver invented the phrase ‘social model of disability’ which emphasizes that the problem of disability is within society that fails to provide services and ensure people with disabilities’ needs are fulfilled (Oliver, 1990a). Furthermore, studies by Finkelstein and Oliver demonstrate that the social model provides inclusive opportunities for people with disabilities in exercising their civil and political rights within the community (Oliver, 1990b). Owens claimed the social model as the most well-established approach to understanding disability and people with disabilities (Owens, 2015). Disability rights activists in Indonesia had a similar notion to the social model. It can be traced back to when many Indonesian activists participated in the Reformasi (reform) movements led by Indonesian civil society organizations at the end of Soeharto’s regime in 1998, which provided momentum for oppressed minority groups (Antlőv et al., 2008), including people with disabilities, to voice their aspirations (Aspinall, 2013). They contended that policies and regulations structurally ‘disabled’ people’s ability to exercise their rights

The influence of disability models in Indonesian past and present  205 and demanded the government devote more resources to implementing programs aimed at achieving equal rights for people with disabilities in all aspects of life (Thohari, 2011). This momentum was also used by progressive disability activists in Yogyakarta and Central Java to challenge the official term penyandang cacat (people with defects/the handicapped) used to describe an individual with disability in government policies by proposing the term difabel (people with different abilities). Even though advocates believe the term difabel is the most appropriate and positive term for people with disabilities in Indonesia, it has never been used as the official term in the statutory text, and instead the term penyandang disabilitas (a person with disability) is officially used in the IDA. Although the social model of disability has successfully explained that disability is a social construct and problems related to it come from factors outside of the individuals who experience disabilities, the social model has also been criticized because it tends to blame society for ‘disabling’ individuals with disabilities, and ignores the presence of impairment which is people’s personal experience (Shakespeare & Watson, 2002). It also overlooks the recognition of inherent human rights which people with disabilities are entitled to, while in the absence of the social model, a civil rights movement successfully urged the US Government to sign Section 504 which recognizes that people with disabilities have the same human rights as people without disability (Fleischer & Zames, 2005). Following that, the adoption of the CRPD in 2006 brought another alternative to understanding disability. The Convention formally sets an unprecedented international human rights standard for people with disabilities. Degener points out that the human rights model enshrined in the Convention focuses on the inherent dignity of human beings. Human rights do not require people’s impairment to be medically treated first. The Convention requires national policies around the world to contain provisions guaranteeing people with disabilities’ full and equal enjoyment of human rights (Degener, 2016a). This notion gradually began to have an impact on disability activism in Indonesia, highlighted by several protests across Indonesia demanding the termination of the Handicapped Act due to its provisions neglecting people with disabilities’ full enjoyment of human rights. Protesters used this momentum to demand the Indonesian Government ratify the CRPD in 2011 after signing it in 2007. Consequently, to implement the CRPD the Indonesian Government also had to enact the IDA which adopts the human rights model of disability enshrined in the CRPD.

4.

THE HANDICAPPED ACT: THE CONTESTATION BETWEEN THE MEDICAL AND SOCIAL MODELS OF DISABILITY

There is no sufficient legislative evidence that directly mentions or suggests how the medical model of disability became the foundation of the Handicapped Act formulation. However, the legislators’ tendency to understand disability as the medical model of disability can be found in a set of legislative minutes. According to the minutes the initiation of the Handicapped Bill was set in motion after a series of seminars and workshops on disability organized by the Indonesian Department of Social Affairs (DOSA) in cooperation with the Japan International Cooperation Agency from 1996 to 1997. They concluded that despite the enactment of Government Regulation Number 36 of 1980 on Social Welfare Provision for the Handicapped, it was not sufficient to address problems facing Indonesians with disabilities. They contended that in order to guarantee Indonesians with disabilities’ rights to enjoyment of national devel-

206  Research handbook on disability policy opment programmes on an equal basis, a statute should be established in conformity with the national development objectives (Republic of Indonesia House of Representatives, 1996a). In a legal context, a disability definition is important because it has legal consequences about what rights people with disabilities are entitled to. The Handicapped Act referred to people with disabilities as people with defects/the handicapped, and defined them as follows: The Handicapped are individuals who have physical and/or mental impairment that may disrupt and hinder their activities. The handicapped consist of: 1. People with physical impairment. 2. People with mental impairment. 3. People with physical and mental impairment.

Following the ‘handicapped’ definition, the House of Representatives and DOSA outlined three rights that the Handicapped Act covered. They were the rights to rehabilitation, to obtain social protection, and to receive social welfare services. However, in the final legislative meeting, the House of Representatives changed them to six rights, namely: the rights to education, employment, equal participation in development and enjoyment of its benefits, rehabilitation, social protection and welfare programmes, and to develop abilities, talents, and social skills. Despite this, more historical accounts suggest policy products, such as development programmes and implementing regulations based on the rights derived from the Handicapped Act, tended to divide the whole society into two contrasting categories – namely the handicapped and non-disabled people. This was a typically discriminatory dichotomy influenced by the medical model of disability in which disability is perceived as a problem that needs to be solved, rather than its acceptance as a part of human diversity. As a result, there was a striking dichotomy in policies application for non-disabled people and the handicapped which contributed to the isolation of the handicapped from general society (Salim, 2019). Furthermore, Salim wrote that in light of some discrimination faced by Indonesians with disabilities under the Handicapped Act application, that the term ‘handicapped’ was finally challenged by several disability rights activists. Mansour Fakih, a sociologist, was the first person who introduced the term ‘different ability’ to challenge the term ‘handicapped’ because the latter had profoundly divided society and led to discriminatory treatment and negative attitudes towards Indonesians with disabilities. The term ‘different ability’ was then followed with a notion of bringing people together to bridge the gap between people with and without disability and to resist the structural and systematic exclusion of people with disabilities that was perpetuated by the medical model enshrined in the Handicapped Act. Following the emergence of the term ‘different ability’, several disability organizations emerged to bring more people with disabilities’ voices to the surface. One of them is Bandung Independent Living Centre (Bilic). Its naming was influenced by the emergence of Independent Living Centres across the US whose mission is to advocate for people with disabilities’ independence to assess what they need and make their own decisions. The idea of independent living very much resembles the concept of the social model that fundamentally challenges the medical model. While the medical model asserts that disability is merely a medical issue, the social model argues that disability is a social construct. The construction of our societal fabric is made by and for able-bodied people. Consequently, those who are disabled may not fit into societal structures (Illinois University Library, 2020). The fall of the Soeharto administration in 1998 brought an opportunity for Indonesian disability rights organizations to manifest their advocacy by spreading the use of the term

The influence of disability models in Indonesian past and present  207 ‘different ability’, demonstrating people with disabilities’ independent living to society, and demanding that the way the Soeharto administration treated people with disability must be ended by Soeharto’s successor. The Soeharto administration perceived the handicapped as people who had no capability leading to their marginalization, while the term ‘different ability’ was understood by disability rights activists as everyone is capable of doing anything with their own different abilities (Thohari, 2019). Consequently, the next administrations must recognize that people with disabilities have the same capability as their peers without disability, and it is the stigma and unfair statute that disables them, and thus such a law must be amended.

5.

THE INDONESIANS WITH DISABILITY ACT: THE END OF THE MEDICAL MODEL AND THE BEGINNING OF THE HUMAN RIGHTS MODEL

Disability rights advocates in the post-Soeharto era urged the amendment of the Handicapped Act. The first reason for its amendment is that it was enacted before the first amendment of the 1945 Constitution took place in 1999. The first amendment specifically laid the foundation of human rights recognition which was the major change in the Indonesian legal system. Human rights recognition in the Constitution automatically prompted all statutes and regulations passed before the first Constitution amendment to be reviewed to ensure they did not contradict the Constitution. From a philosophical perspective, the law must always adapt ‘with a great variety of social settings and types of government’ (Slapper, 2014, p. 1), and thus, the Handicapped Act, the provisions of which lacked a human rights perspective, needed to be amended. The second reason is that Indonesia ratified the CRPD. Fajri Nursyamsi, a disability law expert from the Indonesian Centre for Law and Policy Studies, argues that the adoption of the CRPD by the United Nations (UN) does not form new rights; rather it reiterates a clear message that people with disabilities are entitled to all rights recognized in all applicable international human rights treaties. As a result, all Member States must implement the CRPD provisions through their national laws. Considering the fact that the Handicapped Act was implemented based on the medical model and failed to comply with the CRPD provisions, the Handicapped Act amendment was undeniably necessary (Nursyamsi et al., 2015). The formulation of the Indonesians with Disability Bill (IDB) began in 2015 with the publication of an academic paper accompanying the IDB. According to the academic paper, there were four major problems that hampered disability rights implementation after the Handicapped Act entered into force. First, the term ‘handicapped’ had a strong association with the medical model resulting in society treating people with disabilities as sick people. Second, as the Act provisions did not adequately address the needs of accessibility provision and equal opportunities, people with disabilities found it difficult to fully participate in a wide range of social, economic, and cultural opportunities. Third, the Act lacked provisions for the protection, fulfilment, and respect of people with disabilities’ rights. Finally, the prohibition on discrimination against Indonesians with disabilities and its punishments were not adequately explained in the Act (Daming, 2015). Additionally, the academic paper proposed that the IDB must be able to define the term ‘disability’ and the types of disability in accordance with the universal understanding of disability set out in the CRPD. Another two things that stood out from the IDB were that the government

208  Research handbook on disability policy must establish a national and sub-national coordination system to implement disability rights, and their implementation must be supervised by an independent national disability rights institution. In response to the academic paper and the IDB, the House of Representatives recognized that the future disability law must be in accordance with the human rights concept. Therefore, the definition of disability must be in line with the CRPD definition (Republic of Indonesia House of Representatives, 2015). The IDB was passed into the IDA in 2016. It defines the term people with disabilities as follows: A person with a disability is an individual who experiences physical, mental and/or sensory limitations in their interaction with (physical and virtual) environments and/or societal attitudes that may induce restriction and difficulty in their full and effective participation with other citizens without disability on an equal basis.

In the definition the legislators emphasize that disability only occurs when someone with a physical, mental, or intellectual impairment interacts with physical environments and social attitudes which may hinder their full participation. In other words, the IDA has abandoned the medical model of disability as an element of disability definition and adopts the social model as an element of disability definition which is a manifestation of many years of civil rights protests by disability rights activists that significantly shifted the legislators’ paradigm (Rahayu & Mahardika, 2015). As intended by the House of Representatives, the IDA provisions were established based on the human rights concept which ‘implies that all people are active subjects with legal claims and that persons with disabilities need to participate in all spheres of society on an equal basis with their non-disabled peers’ (Worm, 2012, p. 4). In an electronic communication on 4 March 2021 with Maulani A. Rotinsulu, the Chairwoman of the Indonesian Association of Women with Disabilities and one of the IDA initiators, she contended that the IDA provisions resemble the CRPD provisions. It has 25 development sectors to be carried out by different government agencies that require multisectoral approaches and reciprocal cooperation among them. However, the statute delegates the mandate of coordination for its implementation to the Ministry of Social Affairs (MOSA) which was unanimously rejected by progressive Indonesian disability activists because the MOSA has long perceived people with disabilities as charity programmes recipients, rather than rights holders. In addition, Fajri explained in an electronic communication on 5 March 2021 that from the very beginning the IDA was intended to incorporate the CRPD provisions and principles into the Indonesian bureaucratic and legal systems to address disability rights issues. Its statutory framework is based on the CRPD provisions which can be seen in its Chapters II and III that specifically govern the very basic concepts of disability, people affected by disability, and their rights. As a human rights law, the IDA uniquely guarantees 22 rights which are not accommodated in the Handicapped Act. One of them is the right to data collection. It is known that disability-related data collection often produces striking data discrepancy amongst government agencies that conduct it. The data discrepancy may be linked to the varied and indefinite methods and criteria used in data collection processes. As a result, there are more people with disabilities than statistics have shown (Amaliah, 2016). Disability data collection is unquestionably needed because it:

The influence of disability models in Indonesian past and present  209 play(s) a pivotal role in all areas of policy-making and in every stage from development and implementation, to monitoring and assessment of effectiveness, to the analysis of cost-effectiveness. Policy without valid and reliable data is potentially costly and wasteful guesswork; it is policy without a basis of evidence and good science. (World Health Organization & United Nations Economic and Social Commission for Asia and the Pacific (WHO/ESCAP), 2008)

In an effort to improve data collection for better evidence-based policy-making, the government began to use Washington Group Questions in its 2018 census (Hastuti et al., 2020). When an executive agency writes an implementing policy, it ideally cannot deviate from an administrative law that controls and gives the executive branch authority to implement it through the process of policy-making (Kim, 2014). Therefore, policy choices must be made in accordance with the IDA as an administrative law and valid data obtained from the application of Washington Group Questions. Compared to the Handicapped Act, the IDA has more legal binding provisions that explain detailed disability rights implementation mechanisms that constrain the government from exceeding its executive authority.

6. DISCUSSION We start our legal review on the Handicapped Act. We argue that the definition of the ‘handicapped’ in it had a strong linkage with the medical model. Its definition clearly only mentioned ‘each individual who has physical and/or mental impairment which may disrupt and hinder their participation’ which implies that impairment was the only factor that contributed to a person’s disability. In addition, a legislative consideration in Book 1 of the Handicapped Bill also recognized that disability was a medical condition which was mainly caused by malnutrition, communicable and non-communicable diseases, and ageing-related morbidities. The legislative consideration literally confirms that the House of Representatives perceived disability as a health problem. This paradigm then was adopted as an element in defining the term ‘handicapped’. Furthermore, the six rights mentioned in the Act did not effectively remove physical and social barriers. In essence, these rights could not be fully implemented because the policy makers, whose paradigm was the medical model, perceived the handicapped as sick people who needed medical attention instead of human rights fulfilment. As a result, instead of implementing the six rights, the policy makers only fulfilled the material needs of people with disabilities such as nutrition and health services. People with disabilities’ needs were assessed by professional social and health workers and referred to medical doctors so that they could get ‘fixed’ (Katsui & Kumpuvuori, 2008). To this extent, these rights did not help people with disabilities to move forward and make their own life decisions; rather they maintained people with disabilities as rehabilitation and development objects. In regards to the deliberate dichotomy of the ‘handicapped’ and non-disabled people, we contend that this may link to the past legislative meetings where the House of Representatives and the government agreed that people with disabilities had equal opportunities to quality education and decent employment on the basis of the impairment level he/she experienced (Republic of Indonesia House of Representatives, 1996b). This decision led to several different regulations being applied discriminatively to people without disability, and people with mild and severe disabilities. The severity of the impairment would determine whether someone was eligible to access quality education and decent employment. The less severe the impairment someone had, the more ‘normal’ he/she became, and the more likely they were

210  Research handbook on disability policy to get access to education and jobs they desired. Meanwhile, those whose impairment was considerably severe must be medically ‘fixed’. For example, the Handicapped Act stipulated that people with disabilities were entitled to receive quality education, and under the National Education System Act of 2003 children with and without disability were entitled to study at public schools where lessons were inclusively delivered. However, the government applied an additional condition under the Government Regulation No. 19 of 2005 on Special Education stipulating children with certain levels of physical, mental, and intellectual impairments were to learn at special schools that segregate them from children without disability (Efendi, 2018). Furthermore, we argue that the different application of policies not only discriminated against people with disabilities, but also contradicted what the statute ordered. According to a study in 2010, a primary factor that contributed to the government’s inconsistency in implementing the Handicapped Act was that many government agencies did not write implementing regulations to implement the Act. Instead, they wrote ministerial regulations and circulars which, according to the constructional law, have no legal basis to implement the Act (Irwanto et al., 2010). Although they wrote implementing regulations, they tended to contradict the statute because they did not undergo public consultations in which stakeholders could provide advice and suggestions to formulate their provisions. For instance, although the Handicapped Act required the private sector to employ people with disabilities with a 1 per cent minimum of 100 employees and those that violated the Act provisions would be punished with a maximum six-month imprisonment or an IDR 200,000 fine (about US$15), it was very unlikely that companies would hire one because its implementing regulation did not impose the sanction. The private sector’s unwillingness to employ people with disabilities may also be compounded by the Indonesian Government’s legal non-compliance, indicated by a policy choice it made in public sector employment. This can be illustrated with the Workforce Act of 2003 prohibiting each employer from discharging an employee from his/her position due to his/her disability unless his/her disability lasts for more than 12 months. However, a Joint Decree of the Ministry of State Apparatus and Ministry of the Interior Number 01/SKB/M​.PAN/​4/​2003, 17/2003 authorized government institutions to prevent someone who was disabled from being employed and to terminate a civil servant’s employment due to his/her disability while on duty (Priebe & Howell, 2014). Our next legal review on the academic paper written by Daming (2015) finds many of the Handicapped Act provisions, including the definition of the handicapped, and its implementing policies failed to recognize the importance of disability rights fulfilment and protection. Following that, the rise of the term ‘different ability’, which resembles the social model of disability, drove Indonesians with disabilities and the House of Representatives to pass the Indonesians with Disability Act (IDA). The legislators came to an understanding that the statute would adopt the CRPD provisions which recognize human rights as the core element of disability rights policy-making, making its provisions more sufficient for addressing disability rights issues facing Indonesians with disabilities. Additionally, the statute also delegates limited power to the executive branch to implement it in conformity with legislative intent only, implying that when an executive agency writes an implementing policy, it must neither contradict nor exceed what the statute orders. We, however, find that despite having clear and adequate human rights provisions and strict rules of limitation that prevent the government from writing discriminatory policies, the implementation of the IDA is contradictory to what the legislators intended. We have a defining example that may indicate how the policy choices

The influence of disability models in Indonesian past and present  211 made by the Indonesian Government contradict the IDA statutory text. It is the unlawful recent establishment of the National Commission on Disability (NCD). The NCD establishment is mentioned in Article 131 of the IDA, which clearly suggests that to ensure the protection, fulfilment, and respect of disability rights, an independent NCD shall be established. Following that, Article 134 mandates that its establishment shall be regulated by a Presidential Regulation. The statute also outlines that the maximum time taken to establish the NCD is three years after it has entered into force. However, the government took about four years to establish it. In 2020, the Office of the President issued Presidential Regulation No. 68 on the NCD, the provisions of which unlawfully contradict the IDA. In response to the government’s legal non-compliance, Fajri contended there are three reasons why the Presidential Regulation is unlawful and must be amended (Dian, 2020). First, according to the Presidential Regulation the NCD is placed under the MOSA’s organizational structure. However, according to Presidential Decree No. 48 of 2015 the MOSA is not assigned to work on human rights issues, whereas the NCD functions to ensure disability rights are respected, fulfilled, and protected. Second, the NCD placement under the MOSA organizational structure will compromise the NCD’s independence as potential conflicts of interest may arise between the two organizations. Third, under the current NCD establishment provisions, people with disabilities’ interests are underrepresented because of weak NCD independence. The reason for this is that the government misinterprets that the NCD is part of the coordination system carried out by the MOSA as mentioned in IDA Article 129. However, the NCD is an independent national institution and has its own duties as outlined in Chapter VI of the IDA. Additionally, we contend that such legal non-compliance may be linked to the delegation of disability rights-related responsibilities to the MOSA which persistently perceives people with disability in the medical model approach while the IDA adopts the human rights model. Taking the example into account, we argue that the government completely disobeys the statute when writing disability rights implementing policies, and subsequently unlawfully violates disability rights. From a legal perspective, once a statute is passed by the legislature, it immediately transfers authority and responsibility to executive agencies to implement that statute in accordance with legislative intent (Walker, 1999). From a political perspective, a statute is a by-product of policy choices and political consensus. However, it also has power to limit a government’s authority to write a policy containing provisions which may exceed its executive authority and the scope of statutory limitations that it sets out. Statutes are guidance that must not be breached by any individuals, including a government in order to reach good governance, order and the supremacy of law based on the rule of law because the law is the highest rule that even policy choices cannot supersede (Fink, 2016). When it comes to the executive’s policy-making authority, there are two crucial terms that must be distinctively clarified as they have different legal consequences and may affect how human rights are protected, fulfilled, and respected by governments. First, the term ‘rule by law’ implies that the law is used by governments as an instrument to regulate their subjects, and thus they may be considered as a legal entity whose authority is above the law. At this point, they may arbitrarily abuse their power to rule and control their subjects at the expense of people’s human rights. Second, by contrast, the term ‘rule of law’ implies that the law is the highest rule, and thus it equally binds everyone, including governments, to comply with it (Tommasoli, 2012). The existence of the rule of law signifies human rights, including dis-

212  Research handbook on disability policy ability rights, are protected by the law. If the rule of law does not exist or if its supremacy is weakened by unlawful policy choices, human rights will not be fully protected and fulfilled. Indonesia, as a nation that embraces the supremacy of law principle, applies the law as the highest rule to uphold justice and human rights. The IDA, which is a part of the national statute law, functions to guarantee that people with disabilities can exercise their rights. At the same time, it also confines the government’s authority to only write implementing policies based on the legislative intent reflected in the statutory text. Consequently, as social and human rights models of disability have become the foundation of the legislative intent, the government must adhere to the statute when exercising its authority to write implementing policies. The government must not exceed its authority restraints that the statute sets out, or otherwise the regulations it writes may potentially be unlawful and violate human rights (Clegg et al., 2016). However, as the example suggests, we argue that the government has illegally exceeded its authority in writing policies, thus such action is regarded as an act of human rights violation. In other words, the violation of a human rights statute constitutes the violation of human rights themselves recognized under the statute. To prove that the government has violated disability rights provisions in the IDA, we may employ the textualism approach in interpreting the statutory text. The textualists argue that legislative intent is reflected in each word that appears in the statutory text. ‘Textualists care about statutory purpose to the extent that it is evident from the text’ (Brannon, 2018, p. 14). In this sense, we must refer to each word in the IDA. Its Chapter VI clearly suggests that the NCD is an independent institution whose function is to ensure that the implementation of disability rights in Indonesia is in accordance with the IDA. This implies that no branches of government may compromise its independence. Hence, it makes the NCD an important national human rights institution in Indonesia (Kumalasari, 2017). According to the Paris Principles (UN General Assembly Resolution 48/134 of 20 December 1993), a National Human Rights Institution (NHRI) shall be given a broad mandate to ensure and promote the implementation of human rights by monitoring imminent human rights violations and providing advice to the legislative, executive, and judiciary institutions with respect to human rights fulfilment and protection. Additionally, an NHRI shall be autonomous from a government’s power in exercising its authority and duty. Therefore, placing the NCD under the MOSA organizational structure is unlawful and contradicts the legislative intent as well as the international law. In other words, the Presidential Regulation on the NCD contradiction does not only violate the statutory text and international law, but also violates Indonesians with disabilities’ rights. The IDA is a human rights statute, the provisions of which contain universal human rights recognized by civilized nations, including Indonesia. Therefore, the contradiction against it can be interpreted as an act of human rights violation because placing the NCD under the MOSA not only contradicts what the IDA orders, but also weakens its very independence. As a result, the implementation of disability rights in Indonesia may not be optimal as the government’s influence over the NCD may cloud the latter’s judgement and oversight on the former’s performance in implementing the IDA. The government’s legal non-compliance raises a policy analysis question; why the government cannot comply with the IDA while the statutory text clearly provides guidance? In response to that, Maulani, in the same electronic communication on 4 March 2021, wrote that the Indonesian Government’s contradictory policy-making occurs because the policy makers lack sufficient knowledge in disability rights enshrined in the IDA. She believes that

The influence of disability models in Indonesian past and present  213 their lack of disability rights knowledge is induced by less optimal and incomplete disability rights knowledge awareness which should be incessantly promoted by the highest-ranking government officials. As a result, their lack of disability rights knowledge is manifested in several implementing regulations that contradict the legislative intent as demonstrated by the example above. Additionally, Fajri specifically noted that most government agencies that are responsible for writing policies tend to not involve people with disabilities when drafting implementing policies and even avoid conducting public consultations that, according to the Legislation Act of 2011, must be done prior to the enactment of policies. Only a small number of government agencies open their doors for people with disabilities to conduct public consultations. He believes this unlawful practice occurs because of the difficulty in mainstreaming disability rights issues into multisectoral implementing policies. Rather the government responds to disability rights issues by applying social welfare policies managed by the MOSA with its medical and welfare aid approaches. Lastly, the lack of funding for disability rights implementation also compounds the Indonesian Government’s legal non-compliance. Disability policies are, in many cases, not supported with a sufficient budgetary policy. As a result, many of the executive agencies write disability rights policies based on the amount of the funds allocated in a limited budgetary appropriation, instead of complying with the statutory text. This situation simply leaves the policy makers with ‘unfunded mandates’ which are hard to carry out (Powell, 2004).

7. CONCLUSION The Handicapped Act, Indonesia’s first disability rights legislation, the provisions of which adopted the medical model of disability, failed to fulfil and protect Indonesians with disabilities’ rights. Its failure is simply because the Act lacked provisions that recognize human rights, and the policy makers’ understanding of disability based on the medical model misled them to apply discriminatory implementing policies to the handicapped and non-disabled people, resulting in discrimination against the former. Following a series of discriminatory treatments against Indonesians with disabilities, disability rights activists began to resist the oppression by establishing disability rights organizations and coining the term ‘different ability’, which resembles the social model of disability, to challenge the Handicapped Act application. Following that, disability rights activists successfully urged the government to ratify the CRPD in 2011, and subsequently to pass the IDA in 2016. Unlike the Handicapped Act, the IDA provisions were formulated based on the CRPD provisions and human rights principles which suffice to respect, fulfil, and protect the rights of Indonesians with disabilities. Despite having clear and adequate provisions, the government implements the Act in contradiction to the legislative intent which raises a concern with respect to disability rights violation. For example, the Presidential Regulation on the NCD stipulates that the NCD is placed under the Ministry of Social Affairs organizational structure, while IDA Chapter VI stipulates that it is an independent human rights institution that should be autonomous from other government agencies’ influence which may induce unnecessary conflicts of interest between the NCD and other agencies. We argue that such legal non-compliance is linked to the policy makers’ lack of disability rights understanding as understood by the legislators which can be

214  Research handbook on disability policy seen in the statutory text. Finally, the contradiction between the government’s implementing policies and the legislative intent may also be linked to the lack of disability rights funds allocated to each executive agency. As a result, instead of writing disability rights policies based on what the legislators intended, they write it based on the budgetary policy which provides a limited amount of funds for disability rights implementation.

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216  Research handbook on disability policy Republic of Indonesia House of Representatives. (1996b). Rancangan undang-undang tentang penyandang cacat buku 2b (The Handicapped Bill Book 2b). Secretariat General of Republic of Indonesia House of Representatives. Republic of Indonesia House of Representatives. (2015). Laporan singkat rapat badan legislasi dpr RI dalam rangka mendengarkan penjelasan dari wakil pengusul ruu tentang penyandang disabilitas (Brief report on the Indonesians with Disability Bill legislative meeting between the House of Representatives and the Bill’s initiator). Secretariat General of Republic of Indonesia House of Representatives. Salim, I. (2019). Keluar dari hegemoni pencacatan: Sebuah kajian politik pengetahuan dalam aktivisme gerakan difabel Indonesia (Escape from the hegmony of the handicapped label: A scientific political work on the activism of the different ability movement in Indonesia) [Doctoral Dissertation, Universitas Gadjah Mada]. Shakespeare, T., & Watson, N. (2002). The social model of disability: An outdated ideology? Research in Social Science and Disability, 2, 9–28. https://www.um.es/discatif/PROYECTO_DISCATIF/ ​ ​ ​ ​ ​ ​ ​ Textos_discapacidad/00_Shakespeare2.pdf ​ ​ ​ ​ Slapper, G. (2014). How the law works (3rd edn). Routledge. Suharto, S., Kuipers, P., & Dorsett, P. (2016). Disability terminology and the emergence of ‘diffability’ in Indonesia. Disability & Society, 31(5), 693–712. https://doi.org/10.1080/09687599.2016.1200014 ​ ​ ​ ​ ​ ​ ​ The Union of the Physically Impaired Against Segregation (UPIAS), & the Disability Alliance. (1976). The Union of the Physically Impaired Against Segregation and the Disability Alliance discuss fundamental principles of disability. https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ library/UPIAS-fundamental-principles.pdf ​ ​ ​ ​ Thohari, S. (2011). Contesting conceptions of disability in Javanese society after the Suharto regime: The case of Yogyakarta, Indonesia. Hawaii University. http://hdl.handle.net/10125/101399 ​ ​ ​ ​ ​ Thohari, S. (2019). Promoting ‘difabel’: Promoting a social model of disability in Indonesia, study of disability movement in Yogyakarta. Jurnal Kajian Ruang Sosial Budaya, 3(1), 79–99. doi: 10.21776/ ub.sosiologi.jkrsb.2019.003.1.06 Tommasoli, M. (2012). Rule of law and democracy: Addressing the gap between policies and practices. UN Chronicle (49th edn, pp.  29–31). https://www.un-ilibrary.org/content/journals/15643913/49/4/8/ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ read Tsaputra, A. (2019). Disability inclusive budgeting in Indonesia: A pathway to difabel citizenship [Doctoral dissertation, University of New South Wales Sydney]. UNSW Sydney. https://doi.org/10 .26190/unsworks/21637 ​ ​ Walker, M. E. (1999). Congressional intent and deference to agency interpretations of regulations. The University of Chicago Law Review, 66(4), 1341–1371. https://doi.org/10.2307/1600371 ​ ​ ​ ​ ​ Widyantini, A. R. (2018). Paradigma human rights based dalam kerangka hukum penyandang disabilitas (Human rights paradigm in the legal framework of disability rights). Jurnal Kesejahteraan Sosial, 2(2), 172–179. https://doi.org/10.31326/jks.v2i02.156 ​ ​ ​ ​ ​ ​ ​ World Health Organization, & United Nations Economic and Social Commission for Asia and the Pacific (WHO/ESCAP). (2008). Disability statistics: Why are they important and what does the ICF add? https://www.unescap.org/sites/default/files/Chapter1-Disability-Statistics-E.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Worm, I. (2012). A human rights-based approach to disability in development: Entry points for development organizations. Deutsche Gesellschaft für Internationale Zusammenarbeit (GIZ) GmbH & Christian Blind Mission (CBM). https://reliefweb.int/sites/reliefweb.int/files/resources/ ​ ​ ​ ​ ​ ​ ​ ​ A_human_rights-based_approach_to_disability_in_development.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​

17. The Accessible Canada Act: a political expression of disability rights as human rights Michael J. Prince

INTRODUCTION Worldwide, human rights legislation for people with disabilities is a continuing evolution in contemporary state politics, citizenship practices, and societal exclusions and inclusions. Signs of this disability rights evolution in the 21st century include most countries ratifying the UN Convention on the Rights of Persons with Disabilities (UNCRPD), and many nations introducing legally binding statutes with enforcement mechanisms of various kinds and effectiveness, pushing the boundaries and content of freedoms and rights (Berghs, Chataika, El-Lahib & Dube 2020; Disabled World, 2020; Sabatello & Schulze, 2013; Series, 2019). This chapter explores this continuing evolution in disability rights through a case study of disability rights as human rights in an advanced liberal welfare regime. The chapter examines the passage of the Accessible Canada Act (ACA) by the Parliament of Canada in 2019. The stated purpose of this Act is to benefit all persons, especially persons with disabilities, through the realization within matters coming under the legislative authority of Parliament of a barrier-free Canada by 2040. The ACA applies to employment, the built environment, information and communication technologies, the procurement of goods, services and facilities, the design and delivery of programmes and services, transportation, and other areas designated under regulations. I address three sets of questions. First, what role did disabled people’s organizations serve in the development of this law? What opportunities existed for their participation in public consultations and legislative processes? Second, what kind of human rights approach to disability does the ACA signify? What is the scope and nature of the rights provided for in the ACA? In other words, how robust and extensive is the law as a human rights approach to disability? Third, what are the likely symbolic and substantive effects of the Act on policies and practices, on popular understandings of disability, and on disability movement organizations? The chapter considers these questions in turn. The first section discusses the nature of disability activism in relation to the development and passage of the ACA and the second section outlines the disability and human rights landscape in Canada. The third section describes the nature of Canada’s liberal welfare state regime and the human rights conceptions evident in the ACA. The fourth section discusses the categories of human rights expressed in this legislation, and the fifth section considers some likely effects of the law on disability rights and policy issues. The final section offers concluding observations.

DISABILITY ACTIVISM IN LEGISLATING RIGHTS This case of human rights law-making offered political spaces for collective action by people with disabilities, spaces for coming together in coalitions and networks based on shared 217

218  Research handbook on disability policy values and goals forged in working relations, previous campaigns, and personal connections. Consultative and legislative processes for the ACA drew disability activists, disability organizations, and their allies into multiple formal interactions with state officials and policy-making. This activism by the disability community – of which this author was a participant – comprised mainly conventional political activities of working within the Canadian state. This entailed participating in federal government consultations, meeting with Members of Parliament and with Senators, meeting with departmental officials and ministerial staff, submitting policy briefs to, and appearing as witnesses before, both House of Commons and Senate committees reviewing drafts of the accessibility legislation. Other actions included petitions, open letters to key political leaders, and getting messages out in the mass media and social media. Strategic goals of the disability movement included getting the Justin Trudeau federal government, when first formed in November 2015, to introduce actual legislation following a robust process of public consultation. This was not a certainty, as there had been the promise of a Canadians with disabilities law by the previous government (Prince, 2010). The disability movement wanted to have input on drafting the legislation before and after introduction. When a bill arrived in the Canadian House of Commons in June 2018, the goals then were to improve the bill, to secure all-party support for the law, and to get it adopted before a general election, expected in the fall of 2019. Disability activists worked on influencing public servants responsible for drafting and advising on legislative details, government leaders responsible for high-level decisions regarding the legislation, and parliamentarians responsible for ultimately approving the legislation. Community groups articulated inclusive notions of disability, barriers, accessibility, and particular ideas on prerequisites for a strong law on accessibility as essential mechanisms for tackling existing injustices of everyday exclusions, systemic obstacles, and significant disadvantages faced by people with disabilities. Human rights and equality served as the frame for collective action (Federal Accessibility Legislation Alliance, 2018). In turn, government officials facilitated and managed consultative processes. The official consultation, announced in the March 2016 budget, ran from June 2016 to February 2017, with a May 2017 government report documenting ‘what we learned from Canadians’ about creating federal accessibility legislation. More than 100 organizations and over 6,000 individuals participated overall via an online questionnaire (available in Braille, large point, e-text, audio, and sign language), a national youth forum, nine roundtables, and 18 public engagement sessions. To support accessible in-person consultations, meetings included English and French real-time captioning, American Sign Language and Quebec Sign Language, and support services for participants who are deaf-blind. In the Canadian north, Inuit sign language was provided. The federal government also offered financial resources to several disability organizations and Indigenous organizations to engage their members and communities. The federal government rightly claimed that this was the most inclusive and accessible consultation ever with Canadians with disabilities (Canada, 2018). After the accessibility bill arrived in Parliament, disability coalitions responded both quickly and comprehensively with specific ideas to strengthen the proposed legislation. One alliance put forward 93 amendments; a few months later a coalition of 95 organizations sent an open letter to the Minister and to parliamentary committee members identifying nine concerns about the bill and proposing corrective actions (McQuigge, 2018). With a focused agenda, high-quality analyses of the bill, and sympathetic backbench Members of Parliament, disability

The Accessible Canada Act  219 activists had modest success with the House of Commons standing committee on the status of persons with disabilities. That committee recommended amendments that expanded the focus of the identification, removal and prevention of barriers; that set time limits for the making of regulations in relation to the duties of regulated entities; and that clarified the appeals process of a decision or order by the Accessibility Commissioner. The House of Commons approved these changes in November 2018. Disability activism continued, turning to the Senate committee on social affairs when it considered the bill in the spring of 2019. More amendments and of a more significant nature occurred there (Naef & Perez-Leclerc, 2019). Among these changes were: adding the deadline of 2040 by which Canada would be barrier-free; recognizing American Sign Language, Quebec Sign Language (Langue de signes québécoises), and Indigenous sign languages as the primary languages for communication by D/deaf persons in Canada; and, adding that multiple and intersecting forms of discrimination and marginalization must be taken into account in any relevant laws, policies, and programmes. When the amended bill returned to the House of Commons bill, it received unanimous support on the last day of sitting before the fall general election. The ACA came into force in July 2019.

DISABILITY AND THE HUMAN RIGHTS LANDSCAPE IN CANADA The ACA is the most recent and perhaps most significant outcome of disability activism for human rights in Canada. A human rights consciousness among people with disabilities and their families and allies goes back several decades, at least to the immediate aftermath of World War II, and the growing tendency by individuals and community organizations to express claims for public services and equal access to programmes in terms of citizenship, equality of opportunities, and social inclusion. With an increased presence in public affairs, disability grew as a salient civic category and multiple group identities, often rooted in medical diagnoses. Disability and human rights activism in Canada gained expression and influence through several social movements and political developments. These include parent-led community living activism since the 1950s, civil rights and women’s rights mobilization in the 1960s onwards, anti-discrimination human rights initiatives, and independent living and consumer advocacy in the 1970s (Murphy, 2016; Panitch, 2007; Prince, 2009). Furthermore, the entrenchment of a Charter of Rights and Freedoms in the Canadian constitution in 1982 granted equality rights and affirmative action programming specified for people with ‘mental and physical disability’. Domestically, human rights laws at the level of both the federal government and the provincial governments in Canada introduced provisions in the 1970s and 1980s, explicitly recognizing the rights of persons with disabilities against discrimination and instituting principles of reasonable accommodation. Where the Canadian Charter, as a constitutional document, governs relationships between the federal and/or provincial state and citizens, federal and provincial human rights laws as statutory documents address citizen-to-citizen relations and often in private sector situations. Other significant developments pertaining to the rights of people with disabilities included the Employment Equity Act 1986/1995, which identified persons with disabilities as a designated equity group, the Court Challenges Program, which offers funding to disability organizations and other equality rights groups under the Charter, and particular leading court decisions (Stienstra, 2020).

220  Research handbook on disability policy International disability policy developments in the United States and at the United Nations had a direct bearing on the growing rights consciousness of disability groups in Canada. The Americans with Disabilities Act represented a domestic example of possibility, at the same time as political opportunities were opening for Canadian groups to contribute in policy deliberations – such as to the UNCRPD. Sustained thinking and research by some national disability groups about a Canadians with disabilities law really began in the late 1990s and became the subject of lobbying federal political parties in the 2006 and subsequent general election campaigns (Prince, 2010). In 2010, after consultations with provincial and territorial governments, Indigenous self-governments, and disability organizations, Canada ratified the UNCRPD and, in 2018, gave accession to the Optional Protocol. In both cases, Canada was not an early adopter, following dozens of other countries including political federations such as Australia and Germany (Disabled World, 2020). Since the early 21st century, several provincial governments have enacted accessibility laws to remove attitudinal, physical, policy, and technological barriers in various domains of the public and private sectors. Overall, these provincial measures reflect and contribute to an evolving accessibility politics. Each of these legislative actions offered valuable public engagement experiences and advocacy lessons for activists in advancing a human rights agenda that expressly includes people with disabilities. This politics of accessibility builds on the legacy of efforts directed at anti-discrimination legislation, reasonable accommodation principles, and the limited scope of affirmative action programmes in Canada (Murphy, 2016; Stienstra, 2020). As Carey notes, ‘[t]he practices of rights are built on continuously shifting meaning systems that incorporate, and at times, conflicting, norms, values, and relational expectations’ (2009, p. 16). Experience with human rights laws revealed that complaints by people with disabilities were the main category of cases across virtually all jurisdictions consistently over many years. That human rights model relied heavily on individuals to launch complaints to seek redress for their specific circumstances and adverse treatment. These past efforts and experiences, similar to those in other countries (see Emens, 2012, on American disability law), together with the more recent provincial accessibility laws thus provided an important legal and political context for complementary action at the national level to address removing barriers to participation for people with disabilities on a more proactive and systemic basis.

A LIBERAL STATE AND THE ACCESSIBLE CANADA ACT Understandably, the ACA reflects the historical, political, and societal context in which it originates and resides. Core features of this context are the liberalism of Canadian society and its politics, the modest activism of Canadian governments, attention to individual and group rights in public policy, the federal nature of the governmental system, and an array of existing laws and regulatory agencies within which the ACA is situated. The Canadian approach to human rights and disability rights anchors in a dynamic amalgam of liberal political ideas and practices (Ignatieff, 2000). In a classical sense of liberalism, this approach gives emphasis to the self-development of individuals, a discourse of equal opportunities to meet one’s potential, protections for property rights, and state guarantees of formal equal rights of members of society under the law. In distinguishing between private and public spheres of life, a core idea of liberalism is that governments ‘impose legal controls

The Accessible Canada Act  221 on private action only for publicly agreed-to purposes and in accordance with due process of law’ (Wilson, 1980, p. vii). Contemporary aspects of liberalism include social conceptions of belonging and participation that connect personal autonomy with human agency that in turn links to societal accessibility. The individual citizen, specifically the disabled citizen, is an embodied individual, endowed with a bundle of capacities and limitations, embedded within a particular social environment. Self-development relates inextricably to economic, political, and social developments. Along with being a liberal democratic regime, Canada is a liberal welfare regime (Prince, 2018). Labour market status plays a major role in determining access and eligibility to social provisions. In large part, the Canadian welfare system is an amalgam of safety net (last resort/ residual welfare) programmes, as would be expected under a liberal regime model, and labour market (wage earner/social insurance) methods of programming. Public policies and social programmes place heavy reliance on personal responsibility and on the provision of services and benefits in the private and voluntary sectors. Indeed, at the interface between public policy and the domestic sphere, an implicit set of family policies make gender-based assumptions about male and female roles and the division of caring responsibilities, although some changes in this sphere are afoot (Rice & Prince, 2013). Likewise, minimal social protection characterizes limited coverage in support for housing, training, and disability insurance and comparatively modest investment in active labour market programmes to promote employment opportunities (see, for example, OECD, 2019, 2021). The widespread use of tax measures addresses various human needs and social issues and serves as a small political gesture by governments. In the field of income security policy, only a few universal income programmes exist; most of the field contains means- or needs-tested social assistance and other income-tested programmes through selective transfer payments and targeted tax measures or a basic reliance on employment-based social insurance programmes such as the Canada/ Quebec Pension Plans, Employment Insurance, and workers’ compensation. For the most part, social insurance programmes provide modest levels of income support or earnings replacement (Béland, Marchildon & Prince, 2019). Social assistance today remains the dominant programme in provincial income policy for low-income individuals and families, and people with disabilities are the largest group of people dependent on these last resort programmes. Benefit levels tend to be meagre, stigmatizing to receive, and saturated with complex rules and bureaucratic surveillance (Prince, 2015). In the ACA there are two different conceptions of human rights. One is the familiar liberal individualism expressed as universal principles of rights to human dignity, self-determination, and the equal worth of all people. The actual universality of these human rights principles in practice is tempered by the constitutional reality that Canada, like Australia, the United States, and some other nation states, is a federal political system with a division of sovereign powers between national and sub-national orders of government. Thus, ‘the purview of matters coming within the legislative authority of Parliament’ largely determines the scope and character of the ACA. The rights to accessibility are therefore federal rights in that they apply to federally regulated entities and not to sectors and entities under provincial jurisdiction, which, significantly, covers most of the economy. The legislation further recognizes the division and overlapping of powers between orders of government by authorizing the lead Federal Minister to work with provinces and territories in coordinating policies and plans on accessibility. Beyond this notion of liberal individualism, the ACA conveys a social group-based orientation to disability rights. In the preamble of the legislation is a clear recognition of the historic

222  Research handbook on disability policy and still ongoing barriers and disadvantages faced by people with disabilities as a category of citizens. There is a clear recognition of different group identities within the general population of people with disabilities, including D/deaf people, Indigenous peoples with disabilities, and people with episodic disabilities, among others. Attention to certain group identities and group rights features in Canadian political culture and history, and can be found in other federal and provincial laws, for example, employment equity programmes and human rights codes, in the Charter of Rights and Freedoms, and in the original 1867 constitutional act founding Canada. It is worth noting that this focus on group identities and group rights does not mean that a minority group model of disability prevails in the Canadian context. Undeniably, discrimination, prejudice, neglect, and exclusion are lived experiences. Generally, though, the group rights of persons with disabilities pursued and promoted are equality rights and entitlements to affirmative action programmes to advance full citizenship and mainstream social inclusion. As with other human rights instruments, the ACA is a direct exercise of state power. The ACA approaches disability as a public policy issue of barriers and obstacles to people living with impairments, a perspective long expressed by disability organizations and advocates, and some academics. Under the legislation, disability means ‘any impairment, including a physical, mental, intellectual, cognitive, learning, communication or sensory impairment – or a functional limitation – whether permanent, temporary or episodic in nature, or evident or not, that, in interaction with a barrier, hinders a person’s full and equal participation in society’. The ACA defines barrier in broad and social terms. It means anything – including anything physical, architectural, technological or attitudinal, anything that is based on information or communications or anything that is the result of a policy or a practice – that hinders the full and equal participation in society of persons with an impairment, including a physical, mental, intellectual, cognitive, learning, communication or sensory impairment or a functional limitation.

The vision of a barrier-free Canada, which underpins the act, is not to be confused with the idea of negative rights and liberty as the absence of state action or the avoidance of state restrictions on personal choices and activities. Instead, the ACA is an expression of positive state action and the belief that liberty and equality of opportunity for all citizens requires a judicious exercise of governmental authority. The ACA is a notable elaboration of the federal government’s role in promoting rights to access and inclusion. As discussed in the next section of this chapter, the ACA sets out a series of rights along with obligations on federal state organizations and federally regulated entities in the economy. The main mechanism is through the identification, removal, and prevention of barriers that interfere with or inhibit the ability of people, and particularly people with disabilities, to participate as equal members in society. In other words, the removal of various societal barriers is a reasonable expectation and a social responsibility, a way to advance accessibility, participation, and inclusion. When introduced in 2019, the ACA entered a policy and administrative space of parliamentary cabinet government already occupied by an assortment of laws, portfolios, regulatory agencies, and complaints processes. The scope of responsibility for the Minister answerable for the new law consequently extends to all matters relating to accessibility over which Parliament has jurisdiction and not assigned to any other Minister or department, board, or agency of the Canadian government. For example, the Canadian Human Rights Act and the Employment Equity Act address matters of workplace accommodation under federal jurisdiction (Stienstra,

The Accessible Canada Act  223 2020). Other federal laws that deal with banking, broadcasting, telecommunications, and transportation have accessibility standards and regulations. Design considerations for the ACA, as stated in government documents, were for it to complement laws that already exist to protect the human rights of people with disabilities; to build on existing federal accessibility rules; and, to do so, by adding a proactive and systemic approach for identifying, removing, and preventing barriers to accessibility. This design approach recognized that ‘most human rights commissions have had to concentrate their scarce resources on dealing with specific complaints. As a result, the persistent patterns of discrimination in the society and the more elusive but potentially highly damaging effects of institutionalized prejudice tend to escape public exposure and remediation’ (Manzer, 1985, p. 174). This systemic approach is to take account of ‘the multiple and intersecting forms of … discrimination faced by persons with disabilities’. In addition, the Minister may initiate, recommend, implement, and promote policies, programmes, and projects in relation to matters relating to accessibility as well as make grants and contributions in support of such programmes and projects.

FIVE CATEGORIES OF HUMAN RIGHTS Every statute on human rights has a categorical composition of entitlements and remedies. Each law has a make-up of different types of rights and a configuration of the relative detail and priority of those rights and their enforcement. In the case of the ACA, it contains varying elements of five broad categories of human rights. These are legal, political/democratic, cultural, social, and economic rights. Legal and political/democratic rights are among the oldest and most fundamental of freedoms, whereas some observers consider cultural, social, and economic rights as newer and less certain claims. In international law, cultural, social, and economic rights ‘are subject to the doctrine of “progressive materialisation” [or progressive realization] to the maximum of a state’s available resources’ (Series, 2019, p. 74). On legal rights, the ACA reflects its embedded nature within established laws and regulations. First, by noting that the Canadian Charter of Rights and Freedoms ‘guarantees the right to the equal protection and equal benefit of the law without discrimination’. Second, by adding that nothing in the act ‘lessens the existing legal rights of people with disabilities under the Canadian Human Rights Act’. This is a non-derogation clause to assure disability groups that the new act does not take away or abrogate any rights already recognized in human rights law. Further, on matters of rules of fairness and due process, the ACA establishes the role of Accessibility Commissioner, located within the Human Rights Commission, to receive and investigate accessibility complaints under the legislation. The Accessibility Commissioner is to deal with such complaints ‘as informally and expeditiously as the circumstances and consideration of fairness and natural justice permit’ (clause 109). In working with other federal government organizations, the Commissioner is to ensure mechanisms are in place among these organizations ‘for the efficient and expeditious referral’ of complaints that fall under their respective jurisdictions. These provisions on investigation, deliberation and negotiation, and adjudication of claims are classic elements of legal rights. On political/democratic rights, the ACA is innovative, going well beyond freedom of expression, freedom of assembly, and freedom of association as traditionally understood and

224  Research handbook on disability policy practised. The legislation grants a helpful package of participatory rights to people with disabilities and some other groups: ● a right to consultation on several specific processes and activities; ● a right to information of various kinds and in alternate formats; and ● a right to direct representation on a standards development organization. Around consultation processes, the ACA specifies several duties for regulated entities and other organizations, and thus rights for persons with disabilities. A regulated entity has a duty, for example, to consult with persons with disabilities in the preparation of its accessibility plan and every updated version of its accessibility plan. As well, a regulated entity must set out the way it consulted with persons with disabilities in the preparation of the plan and then to make the plan available on request in a format prescribed by regulations. When preparing an accessibility plan or updating one, every regulated entity must consider certain principles set out in the act. These principles, set out in clause 6, and which comprise in effect a disability inclusion lens, include ensuring people with disabilities are involved in the development and design of laws, policies, programmes, and services; treating all persons with dignity; and aiming to achieve ‘the highest level of accessibility for persons with disabilities’. In addition, a regulated entity must establish a process for receiving feedback about the manner of implementing its accessibility plan and the barriers encountered by people that deal with that organization. Moreover, they must publish a description of this process and notify the relevant federal regulatory body of the publication. In the preparation of progress reports, once again, a regulated entity has a statutory duty to consult with people with disabilities, to document the manner of that consultation and the information received by way of feedback, and to make these progress reports available on request. Finally, when an independent review of the provisions and operation of this Act is conducted, the person or persons conducting the review have a duty to consult ‘the public, persons with disabilities, organizations that represent the interests of persons with disabilities, regulated entities and organizations that represent the interests of regulated entities’. According to draft ACA regulations, each regulated organization must ensure their accessibility plans, progress reports, and feedback processes are in ‘clear, simple and concise language’. Organizations must also provide, upon request, certain alternate formats of accessibility plans and progress reports. These alternate formats are print copies, large print, braille, audio format, and electronic formats compatible with adaptive technologies of people with disabilities. In this context, then, people have a right to a plan or report in an alternate format if they ask for it. The ACA gives considerable attention to cycles of public reporting and a right to transparency and information. The Canadian Accessibility Standards Development Organization (CASDO), a new agency created under the legislation, is responsible for developing and revising accessibility standards that apply to designated federally regulated sectors. The terms of reference and the name of members of every committee established by the chief executive officer of CASDO to develop and revise standards must be available to the public. Every standard recommended by the Standards Organization to the Minister must be available to the public. The CASDO must submit an annual report to the Minister who must ensure presentation of the report to each House of Parliament (the House of Commons and Senate) within the first 15 days on which that House is sitting. Likewise, the Accessibility Commissioner, who shares responsibility with other federal regulatory bodies for administration and enforcement,

The Accessible Canada Act  225 must submit an annual report to the Minister and a copy to the Minister of Justice, and each House of Parliament must receive that report. The Chief Accessibility Officer, another role newly created under the ACA, has similar obligations to produce and circulate an annual report. Embracing the disability rights movement principle of ‘nothing about us, without us’, the ACA states that ‘persons with disabilities must be involved in the development and design of … structures’. To that end, the legislation sets out a right to representation regarding the membership on the board of directors for CASDO. This political right has three statutory aspects: that most board members must be persons with disabilities; that the board members must be representative of the diversity of disabilities; and that the board must have directors who are representative of the diversity of Canadian society. Reflecting demands by disability groups for meaningful democratic engagement in regulation making, this package of political rights evidently intends to enhance the presence and voices of people with disabilities and thus their influence in standard-setting organizations and processes. Cultural rights given legal recognition relate to community languages, the right to access and participate in artistic and communication mediums, respect for cultural diversity, and raising public awareness of barriers and the importance of accessibility standards and design. On language rights, the legislation refers to barrier-free communication that includes the use of American Sign Language, Quebec Sign Language (Langue de signes québécoises), and Indigenous sign languages. The ACA recognizes these as primary languages of D/deaf people in Canada, essential to participate equally in social and economic affairs (Snoddon & Wilkinson, 2019). Removing and preventing barriers of access to broadcasting and telecommunication sectors are significant public spaces of federal jurisdiction. The legislation also establishes a new annual event, National Accessibility Week, for celebrating the contributions of people with disabilities and for promoting inclusion and accessibility in communities across the country. Through raising public awareness, one aim is to foster inclusive norms and to shift societal attitudes and behaviours in a positive direction informed by a human rights perspective (Stienstra, 2020). Over time there will likely develop an ongoing series of conversations in different formats between accessibility policy makers and numerous publics. Economic and social rights feature less prominently in the ACA because, in a fundamental sense, it is framework legislation establishing a machinery of governance arrangements and authority relationships. One of the principles stated in the ACA is that ‘everyone must have the same opportunity to make for themselves the life they are able and wish to have’. Future standards and regulations could well bear on economic and social policies and programmes. The significance of economic rights will be found in accessibility plans and any rules developed, within federal jurisdiction, to remove and prevent barriers in workplaces and employment services, the built environment, transportation networks (airlines, marine, rail and bus carriers that operate cross-provincial, territorial or international borders), and the procurement of goods, services, and facilities. Matters of labour mobility, fair wages, equal pay for equal work, safe and healthy working conditions, workplace accommodations, and paid sick leave are all addressed in other federal (and provincial) laws, such as human rights, labour codes, and employment standards legislation. In the same way, social rights are not a primary or explicit focus of the Canadian accessibility law. Entitlements to federal programmes and services for children and families, the unemployed, the elderly and retirees, college and university students, immigrants, homeowners and renters, people with significant disabilities, veterans, and additional constituencies are based in

226  Research handbook on disability policy other laws, policies, activities, and intergovernmental agreements. In the Canadian federation, the primary responsibility for many areas of social policy is with provincial governments including early childhood education, primary and secondary education, health care, and various disability-related supports and services. Thus, the ACA is essentially silent on social rights in the Marshallian sense of public programmes and income benefits for a fuller measure of equality and citizenship in the national community (Prince, 2016). However, the legislation does convey as a principle the full acceptance of people with disabilities as members of society, participating without barriers in public spaces and public services. Overall, the ACA is about more than simply enacting old rights in new legislation. It exhibits some distinctive and novel qualities in its statutory provisions on human rights, notably in the categories of political/democratic rights and cultural rights.

LIKELY EFFECTS OF THE ACA ON DISABILITY RIGHTS AND ISSUES ‘To formulate a law is essentially a job of constructing a setting in the sense of building background assumptions and limits that will persist over time and influence the quality of political acts’ (Edelman, 1964, pp. 103–104). So, what are the likely effects of the ACA on policies and practices, on popular understandings of disability, and on disability movement organizations? How might relations of power and influence be reshaped? The human rights for people with disabilities formulated in this law will be influenced by, operate within, and contribute to a dynamic environment of supporters, sceptics, and spectators. With such recently enacted legislation, this assessment must be, by necessity, a preliminary review. Two kinds of effects are considered here: substantive elements and symbolic meanings. First, the law intends to be consequential to citizenship and government–society relations. As a statutory law governing rights and duties within federal jurisdiction, substantive effects relate to operational resources and administration, and compliance and enforcement activities that aim at material changes in behaviours and practices in social contexts. Second, as symbolic action, the ACA is a statement of the socioeconomic value of accessibility and inclusion as well as a political affirmation of the inherent worth of a group of people who historically, and still today, are disadvantaged within the general population. Substantive Elements and Impacts The ACA constructs a practical governance setting by creating organizational roles and agencies with new mandates within the federal public service; establishing new lines of authority and obligations along with accountability and reporting relationships; specifying rules and authority for setting standards and making regulations; enabling the provision of certain services; and authorizing a range of administrative penalties. As noted earlier, the ACA further constructs a governance setting by applying and even extending several categories of human rights to accessibility policy and by legitimizing modes of access for disability representatives and other interests to this legislative field. New forms of information and learning, and no doubt administrative capacity building, will result from the processes for developing, evaluating, and revising accessibility plans. For provincial jurisdictions still without accessibility legislation, the ACA may influence local political agendas and

The Accessible Canada Act  227 policy discussions; and, for jurisdictions with such laws, the federal legislation raises issues of coordination and possibilities for sharing experiences and mutual learning. Substantive impacts of legislating accessibility go beyond rulemaking, as is apparent in the multifunctional mandate of the CASDO. Indeed, there is significant potentiality in the mandate. In addition to developing and revising standards, and its representative function of people with disabilities, the organization has advisory, research and information, funding, and administrative powers. The Standards Organization can licence any patent, copyright, industrial design, or trademark that comes from their work. In relation to standards established, the organization can provide information, products, and services. To support the focus on systemic and proactive action, the organization can promote, support, and conduct research into the identification and removal of barriers to access for people with disabilities and into the prevention of new barriers. The organization can also disseminate information on best practices regarding barrier removal and prevention. On financial and management matters, the organization may make grants and contributions, charge fees for information, products or services provided, and manage property rights it holds or controls. These multiple functions will influence the CASDO’s workload and organizational relations within the federal government and with external stakeholders. Responsibility for the law’s administration and compliance and enforcement lies with the newly formed role of Accessibility Commissioner and existing federal regulatory agencies and tribunal bodies. The recently formed Council of Federal Accessibility Agencies comprises the Accessibility Commissioner along with the Canadian Human Rights Commission, Canadian Human Rights Tribunal, Canadian Radio-television and Telecommunications Commission, Canadian Transportation Agency, and the Federal Public Sector Labour Relations Employment Board. Central mechanisms to encourage compliance by public and private organizations with the legislation are the procedures around the development of accessibility plans, feedback reports, and progress reports by regulated entities. Enforcement mechanisms include accessibility inspections, mediation, and publication about known barriers, and monetary penalties, which could range from small fines for minor infractions to a maximum of $250,000 for a large organization that commits a serious violation and perhaps is a repeat offender. The long-term aim is to provide across the country greater and more consistent accessibility in sectors under federal jurisdiction. In the lead-up to introducing the ACA and since enacting it, federal budgets have announced a series of investments and measures in support of an accessibility and disability inclusion agenda. The 2018 federal budget, for example, heralded an investment of $290 million over six years to implement the Act and to ensure the federal government leads in accessibility improvements for persons with disabilities. In the 2019 budget, the Canadian government declared its intention to become a model employer for workplace accessibility and set a target and timeline of hiring at least 5,000 people with disabilities in the federal public service over the next five years. Additional funding also came for identifying, removing, and preventing technological barriers in federal government workplaces. Other investments are to support employment for persons with intellectual disabilities, visual impairments, and autism spectrum disorders; and to enhance access to public libraries for people with a print disability (learning, physical, or visual condition that prevents a person from reading conventional print). The 2021 budget provides additional funding of $100 million over two years, to triple funding for the Enabling Accessibility Fund and support not-for-profit organizations, women’s shelters, child care centres, small municipalities, Indigenous organizations, territorial govern-

228  Research handbook on disability policy ments, and businesses to help offset the costs of renovations, retrofits, and accessible technologies in workplaces (Canada, 2021, p. 235). Other recent federal government measures aim at improving access to tax benefits, income supports, savings plans, and education funding for various groups of people with disabilities. All these budgetary and programmes decisions illustrate the connection between human rights, disability, and public policy. Symbolic Meanings and Impressions Aside from mandates and statutory instruments, a law both contains and communicates meanings and social ideas. It does so by declaring fundamental objectives, which a political community specifies and which a population can identify with and endorse (Breton, 1984; Edelman, 1964). Batavia and Schriner (2001, p. 693) make this point in reference to the Americans with Disabilities Act (ADA). They write that the ADA indicates that a major goal of disability policy in this country is to ensure the inclusion of people with disabilities in the mainstream of our society, and that people with disabilities are to be treated as first-class citizens. Using the ADA as philosophical statement reflecting our national disability provides guidance and is valuable to keep us focused on ultimate policy goals.

Of course, some objectives and the background assumptions or social norms underlying them may be consensual while others are controversial, evoking a range of attitudes to disability and responses by courts, employers, and legislatures (Emens, 2012). As historic and innovative pieces of legislation, the ADA (Davis, 2015) and the ACA have elements of both qualities. The vision of the ACA is proactively to eliminate barriers – through developing standards, undertaking compliance and enforcement measures, and promoting culture change – and to ensure greater opportunities for Canadians with disabilities. To be proactive and systemic in tackling barriers, rather than rely on individuals to launch cases of complaints, signals a more respectful and supportive relationship between people with disabilities and government. For some people a cognitive effect of this legislation may be a more positive sense of self as a citizen and a more favourable and optimistic perception of government (Breton, 1984; Mettler, 2005; Prince, 2009). As already discussed, for the board membership of the standards organization a majority of directors are people with disabilities. This represents a transformation in the character of regulatory governance arrangements in the federal government that relate to disability rights and public policy issues. The ACA’s textual language is legalese to be sure; it is also a form of political vocabulary. One that clearly imparts a human rights discourse of individual dignity, equality and opportunity, accessibility and inclusion, and a recognition and acceptance of differences by the state. There is also a democratic message in the commitment to increase the presence and voice of people with disabilities in the implementation, monitoring, and subsequent evaluation of this legislation. In the words of an experienced Canadian disability activist The motto, ‘Nothing about us without us’ is a familiar phrase that has been uttered far and wide by the disability rights movement for many years. Increasingly, we expect to be viewed in a different light, not merely as one more group of stakeholders but to have a preeminent place at any table where policies, programmes or legislation is being considered. We expect increased representation in all decision-making bodies that affect our quality of life. (Rae, 2020, p. 92)

The Accessible Canada Act  229 These words and the broad conception of barriers included in the law connect to models of disability rooted in the fluid and dynamic interconnections between bodies and environments; socio-political models embraced by rights activists and policy advisers and in turn used to frame reforms and to evaluate governmental responses (Fougeyrollas & Grenier, 2018; Sabatello & Schulze, 2013). What is in a name? For years before the legislation occurred, disability groups and others spoke of the need for a Canadians with disabilities act, no doubt influenced by the title of the American legislation (Prince, 2010). When, however, the Canadian bill appeared the official title did not refer to disability or to Canadians with disabilities. This was a deliberate choice, one favoured by the Federal Minister for Disability, who did not want the law to seem a selective approach informed by identity politics. Instead, the title strives for a comprehensive framing of the legislation. The core ideas are accessibility, equality, and a barrier-free Canada (Naef & Perez-Leclerc, 2019). The message is that the law will benefit the general population and society-at-large, not a minority group of people living with disabilities. It is not about special treatment or reverse discrimination but equal and fair treatment under and by the law. The ACA name conveys the universality of human rights and may help mobilize political backing and general community support. Basic human rights, Mandle explains, ‘are universal in two senses. First, every human being is entitled to enjoy these rights. Second, everyone has a duty of justice to respect these rights. That is, human rights generate duties that apply universally, although these duties may be of different strength with respect to different people’ (2006, p. x). The language of fundamental human rights, expressed in United Nations conventions, the Canadian Charter of Rights and Freedoms, and federal and provincial human rights codes, and high court decisions help shape public narratives and political debates over disability policy and programming.

CONCLUSIONS This chapter examined a national law in one country, the Accessible Canada Act, which represents a distinctive and recent legislative initiative to advance the human rights of people with disabilities. While a case study, the analysis has implications for international debates on disability rights and for disability activism (Berghs et al., 2020). This law, and similar ones in other jurisdictions, are an important element in the larger agenda of reducing societal barriers, transforming cultural beliefs, establishing meaningful opportunities to participate in the economy and society, and providing essential public services. National and sub-national disability laws build on past legislative and policy efforts that address anti-discrimination, reasonable accommodation, and affirmative action. In the context of industrial nations, these are among the distinctive characteristics of the Canadian welfare state as a regime-type. Comparative studies could shed light on the evolving content of disability laws, the scope of citizenship rights enacted, implementation and enforcement mechanisms adopted, and their symbolic and substantive effects. Disability interest groups and movement coalitions actively mobilized, participating in the consultation and legislative processes for the ACA, and they successfully influenced the framing and the final text of the law in some notable ways. Other key actors who shaped this rights legislation were business and industry interests, recommendations from federal government officials, parliamentarians, and strategic choices by cabinet ministers. The institu-

230  Research handbook on disability policy tional setting of federal jurisdictional powers and pre-existing human rights codes, provincial accessibility laws, and other public policies undoubtedly shaped the scope and character of the ACA. As the latest effort by the Canadian government in shifting public understanding of disability, the ACA contributes to the enduring interaction and perennial tension among the medical, charitable, economic, social, and other working models of disability and equality. The analysis described how the legislation contains components of five broad categories of human rights: legal, political/democratic, cultural, economic, and social rights. In modern politics generally, and in disability rights politics more specifically, divergent interpretations and levels of interest group support connect to each of these rights categories, producing contentious debates over the pace, nature, and scope of policy change (Mayerson & Yee, 2001). Claims making for human rights expresses many ideas and arguments: compensation and restitution, needs, equality, diversity and difference, merit and deservingness, and contractual entitlements grounded in social insurance. All this makes disability rights, as an idea and set of discourses, highly relevant and hotly contested in social policy, litigation, and governing (Vanhala, 2014). There is no reason to assume that accessibility legislation will be immune to political vicissitudes. The ACA could be among the most proactive and systemic human rights approach to date in tackling exclusion and stigma and in advancing participation and inclusion. Future empirical research could document actual achievements and lessons about challenges and opportunities for disability rights. Many of the details that will condition the law’s effectiveness will come through the actual standards and regulations, the resources invested in this accessibility regime, the exercise of discretionary authority by officials, and the interplay of public and private forms of power in compliance and enforcement. While there are often linkages, there are also differences between the recognition and attribution of rights and the realization and actualization of those rights. Disability organizations and activists consequently have a continuing stake in the implementation of the ACA, and the law offers several mobilization opportunities for political engagement and policy advocacy. One is on matters of identifying and removing barriers to access and preventing any new barriers in areas under federal responsibility. The development of standards and the monitoring of accessibility plans are structured spaces for human rights activism and community action. Another mobilization opportunity centres on the newly established National Accessibility Awareness Week and yet another is the periodic parliamentary and independent reviews of the law, offering further occasions for public debate and policy evaluation and making rights claims for equality.

REFERENCES Accessible Canada Act S.C. 2019, c.10 https://laws.justice.gc.ca/eng/acts/A-0.6/page-1.html ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Batavia, A. I., & Schriner, K. (2001). The Americans with Disabilities Act as engine of social change: Models of disability and the potential of a civil rights approach. Policy Studies Journal, 29(4), 690–702. Béland, D., Marchildon, G. P., & Prince, M. J. (Eds.). (2019). Universality and social policy in Canada. University of Toronto Press. Berghs, M., Chataika, T., El-Lahib, Y., & Dube, K. (Eds.). (2020). The Routledge handbook of disability activism. Routledge. Breton, R. (1984). The production and allocation of symbolic resources: An analysis of the linguistic and ethnocultural fields in Canada. Canadian Review of Sociology and Anthropology, 21(2), 123–144.

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232  Research handbook on disability policy Snoddon, K., & Wilkinson, E. (2019). Problematizing the legal recognition of sign languages in Canada. The Canadian Modern Language Review, 75(2), 128–144. Stienstra, D. (2020). Disability rights (2nd edn). Fernwood Press. Vanhala, L. (2014). Meaning frames, opportunity structures, and rights in the Canadian disability movement. In M. Smith (Ed.), Group politics and social movements in Canada (pp. 305–331). University of Toronto Press. Wilson, J. Q. (1980). Introduction. In J. Q. Wilson (Ed.), The politics of regulation (pp. vii–xii). Basic Books.

18. Narrative 5: Locked-in, locked-down: lived experience of a non-speaker Tim Chan

“No man is an island”, according to John Donne. However, for an autistic non-speaker like me, social isolation is a constant companion. My travels with autism officially started with my diagnosis with autistic disorder at three years old, with significant delays in all areas of development. Coupled with hypersensitivities, dyspraxia, information processing issues, high anxiety levels and lack of body awareness, my earliest memories were a huge jumble of confusion, with numerous challenges in figuring out my world. Furthermore, as I was constantly bombarded with overwhelming sensations, my solace laid in seeking refuge in repetitive activities like spinning toys, sand and water play. I am a visual thinker and until the age of six was unable to understand that the sound people made stood for language. Moreover, with a fragmented body map with limited ability in coordinating its various parts, I am also challenged in initiating and sustaining fine motor skills. Despite intensive interventions starting from the age of three, I lagged in the ability to do what was expected of children my age, including speech and in undertaking activities independently. Hence, it was no surprise that I was labelled severely autistic and intellectually disabled. The problem has another name, locked-in syndrome, with which I was later diagnosed at 14. Basically, this translates into an intact mind in a recalcitrant body that won’t/can’t action my intentions. This diagnosis confirmed what I’ve always known; that I had the potential to learn and understand the world. It took years for things to change, with my mother’s commitment to provide me with the best chance of living a full and productive life, and with an individualised programme tailored to my learning needs. Given the necessary support and encouragement to learn at my own pace, the tide began to turn. I started to master language around six. With better understanding of the world and people, I gradually enjoyed participating in new experiences. Another momentous stepping-stone came in learning to type with support, or facilitated communication (FC), at the age of nine. FC opened many doors, including the ability to “talk” to people with a voice-generating device. I became able to connect with people, participate more fully in social activities and do things most people take for granted like go to mainstream school, to emerge into a new life as a person in my own right. The COVID-19 pandemic has ironically provided a window for people to see the world with different eyes. Because of lockdown, social isolation has become part of the new normal. As people begin to understand the effects of being cut off from social contact with mental wellbeing issues, I have experienced more acceptance. Neighbours would come up to greet me and listen to my typed answers, when we went for walks. I’m seeing that inclusion derives from the ability to empathise and identify with people with differences. When life forces us to pause and take stock, we become more open to acknowledging our vulnerability, as well as other people’s. When we are ready to face and accept our predicament, we can choose to act according to our best intents. Long may this acknowledgement continue! 233

19. From international standard to national practice: the role of national disability institutions in making the Convention on the Rights of Persons with Disabilities a reality in South and Central America Renata Anahí Bregaglio Lazarte, Paula Lucía Camino Morgado and Renato Antonio Constantino Caycho

INTRODUCTION The Convention on the Rights of Persons with Disabilities (CRPD) drastically changed the way human rights law and policy interact with persons with disabilities. The Convention’s ambitious approach to align legal standards to the social model of disability makes enforcement quite a complex task. Recognizing this, the treaty lays out a strategy for national implementation and monitoring in its 33rd article, creating an obligation for States to create or designate institutions in charge of making CRPD a reality. Article 33 is unusual in human rights law insofar as it contains legal obligations with clear policy implications. The Article establishes that States must (i) designate one or more focal points for CRPD matters relating to the implementation and (ii) implement a framework for the protection, promotion and monitoring of CRPD implementation. At the academic and international levels, key characteristics of the focal point and framework have been identified. Academic authors including de Beco (2011), de Beco and Murray (2014), de Beco and Hoefmans (2013), Aichele (2018) and Manca (2017) have argued that focal points should be placed at high levels of government, have a sufficient and set budget, include persons with disabilities in key positions, be independent and have access to all branches of the executive government. At the international level, the CRPD Committee, the Office of the High Commissioner for Human Rights (OHCHR) and the European Union Agency for Fundamental Rights (FRA) have echoed similar standards, although placing greater focus on the independence and participation of persons with disabilities. However, most of the literature has been crafted with a European context in mind. Thus, the proposed standards seem difficult to apply in the complex and changing realities of the Global South. As such, implementing the CRPD heightens the need to bridge the gap between human rights theory and public policy implementation that will be highlighted throughout the following sections of this chapter. In this context, the chapter proposes a critical look at CRPD implementation and monitoring frameworks in Latin South and Central America (LSCA).1 We selected this set of countries because they share similar legal standards, especially in terms of human rights standards derived from the Inter-American Human Rights System, a common history and similar traits in the way civil society organizes. They also share similar challenges regarding democracy, rule of law and institutionality. Because of these shared characteristics, we posit that LSCA 234

From international standard to national practice  235 countries will face similar challenges in implementing Article 33, which can be differentiated from those faced in other regions. Our analysis begins with a brief overview of the social model of disability and the framing of the CRPD to understand the need for implementation, monitoring and participation, to then look at the characteristics of the obligations derived from Article 33 CRPD, in terms of what has been said by authors and human rights treaty bodies. With this theoretical framework, we critically assess the mechanisms formally designated in 17 LSCA countries. In doing so, the chapter analyses whether the obligations derived from Article 33 CRPD are clear and attainable. At the same time, we evaluate whether there is a distinct framework and focal point in each country; the role that Disability Councils, a common arrangement in LSCA, play in this structure; and the role that the participation of persons with disabilities and disabled person’s organizations (DPOs) has – or has not – played in implementation and monitoring. Throughout the chapter, we also will reflect on the CRPD Committee’s role in providing guidelines to States on these matters and the difficulty of implementing the CRPD in a Global South context.

1.

A BRIEF OVERVIEW OF THE SOCIAL MODEL OF DISABILITY AND THE CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES MODEL

The social model of disability, recognized in Article 1 CRPD, holds that disability is not inherent in a person, but rather is in society (Oliver & Barnes, 2012; Palacios, 2008).2 From this perspective, the role of society is not to cure the person with a disability, but to tear down sociocultural and legal barriers that are disabling. This notion of disability is transformative in that it places the onus of inclusion on society as a whole, and not on persons with disabilities. It is an idea that is deeply rooted in the framing of the CRPD, and that illuminates the primordial role that persons with disabilities had in the discussions that led to the treaty (Sabatello & Schulze, 2013). It also informs the ideals of autonomy, full participation and inclusion that inspired the redaction of articles regarding legal capacity and political participation, as society must remove those disabling barriers that prevent persons with disabilities from entering the government spaces. In LSCA countries, the CRPD, as other human rights treaties, has a fundamental normative value. Because almost all of these countries adopt the system of automatic incorporation of treaties into national law (Shelton, 2011), human rights treaties become domestic law upon ratification.3 As such, all LSCA countries have ratified the CRPD and attached supra-legal, constitutional or supra-constitutional value to it. This means that the CRPD has a higher legal standing than Disability Acts and other regulations and, as such, these should all be interpreted in accordance with the CRPD. The table below illustrates the legal hierarchy of the CRPD in the countries under study, and the date of its ratification. This provides a powerful tool for civil society since, theoretically, a person can claim the direct application of treaty norms when domestic law is not aligned with international human rights standards (Shelton, 2011). For example, the Mexican Supreme Court has ruled three Acts as unconstitutional since they did not go through a consultation process with DPOs (Mexico Suprema Corte de Justicia de la Nación, 2016, 2017, 2018). The CRPD has also provided a framework for several changes regarding legal capacity in LSCA countries such as Argentina, Brazil, Colombia, Costa Rica and Peru. The CRPD, its impact and its influence

236  Research handbook on disability policy Table 19.1

Legal standing of CRPD per country under study State

CRPD Ratification status and year

CRPD Legal hierarchy

Argentina Bolivia Brazil Chile Colombia Costa Rica Ecuador El Salvador Guatemala Honduras Mexico Nicaragua Panama Paraguay Peru Uruguay Venezuela

2008 2009 2008 2008 2011 2008 2008 2007 2009 2008 2007 2007 2007 2008 2008 2009 2013

Constitutional Supra-constitutional Supra-constitutional Constitutional Constitutional Supra-legal Supra-legal Supra-legal Supra-constitutional Supra-legal Constitutional Constitutional Constitutional Supra-legal Supra-constitutional Constitutional Constitutional

have made it an outstanding tool for persons with disabilities when fighting for their rights. In this struggle, the mechanisms of implementation and monitoring acquire an important relevance.

2.

THE DUAL IMPLEMENTATION AND MONITORING MECHANISM DERIVED FROM ARTICLE 33 OF THE CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES

Article 33 of the CRPD is unusual among human rights treaties, insofar as it creates a specific obligation for State parties to build or assign national institutions or mechanisms to implement and monitor the convention. It creates two independent obligations for State parties: (i) designating one or more focal points for the implementation of the CRPD (that we will call ‘implementation mechanism’); and (ii) designating an independent mechanism to monitor the aforementioned implementation (that we will call ‘monitoring mechanism’). This division between the implementation and monitoring functions is crucial in establishing a control mechanism for enforcement in each State: because functions are divided, and there are checks and balances between institutions (Aichele, 2018; Hoefmans, 2020). The system is also noteworthy with regards to other human rights treaties. De Beco and Hoefmans have convincingly argued that this complex structure responds precisely to the paradigm change described in the previous section, since to correctly implement the CRPD, government institutions will have to overhaul the way they conceive their interactions with persons with disabilities (2013; see also Hoefmans, 2020). A third obligation runs parallel to the previous two: the obligation to meaningfully include persons with disabilities in the monitoring process. This follows a key political principle in disability human rights law: the idea that nothing in the disability rights fields should be created

From international standard to national practice  237 without including persons with disabilities. In the following sections, we will develop these three obligations as the theoretical framework from which we can assess disability institutions in LSCA countries. In doing so, it is important to keep in mind that, as we will note throughout the text, the CRPD Committee and other human rights bodies have given little guidance on the expected structure of the said mechanisms. 2.1

The Implementation Mechanism Derived from Article 33.1 CRPD

The first key element of Article 33 is the obligation to designate or create a focal point for the implementation of the CRPD. This obligation fulfills a dual purpose: (i) it guarantees a cohesive national policy on disability matters; and (ii) it assigns a clear coordination/promotion responsibility to a particular institution or person, creating an incentive for fulfilment (de Beco & Hoefmans, 2013; Mental Disability Advocacy Center (MDAC), 2011; OHCHR – Europe Regional Office, 2014). It is important to note that while Article 33.1 aims to ensure the implementation of a new treaty, it does not require State parties to create new institutions within their organic structures. On the contrary, any existing institutions and coordination mechanisms for public policy regarding disability can and should be repurposed to work towards the CRPD implementation (de Beco & Hoefmans, 2013, p. 26; Manca, 2017, p. 595; OHCHR, 2009, para. 24; OHCHR – Europe Regional Office, 2014, p. 13). Given that the Article establishes an open-ended obligation, a State party can decide whether to create or designate an implementation mechanism that is either an individual public official, a single government entity, or a sum of multiple government entities (a framework), as long as there is one leader within the multiplicity of actors (OHCHR, 2009, para. 24). Despite the broad configuration of this first obligation, the UN OHCHR has recommended that State parties should place persons or organisms in charge of implementation in all or most departments, and at all levels of the state apparatus (Aichele, 2018; Manca, 2017; OHCHR, 2009). These organs could coexist with a coordination organism within a government office (i.e. the Presidency, Cabinet, or similar offices), or in the Ministries of Justice or Human Rights (de Beco & Hoefmans, 2013; OHCHR, 2009). Regardless of the specific configuration of the implementation mechanism, authors and international organizations agree on the importance of ensuring that the role does not fall on Ministries related to Health, Wellness or Special Education, as this would reinforce foregone ideas of disability as a purely medical construct (de Beco & Hoefmans, 2013; Manca, 2017; OHCHR, 2009). 2.2

The Monitoring Mechanism Derived from Article 33.2 CRPD

The second obligation derived from Article 33 is to designate a monitoring framework that allows for the promotion, protection and supervision of the rights of persons with disabilities. In this context, the terms should be understood in the following sense: 1. Promotion means raising awareness about the social model of disability, scrutinizing legislative developments, and providing technical advice to authorities regarding CRPD application (de Beco & Hoefmans, 2013; European Union Agency for Fundamental Rights (FRA), 2016; MDAC, 2011; OHCHR, 2009; OHCHR – Europe Regional Office, 2014).

238  Research handbook on disability policy 2. Protection means investigating complaints regarding human rights violations, and sometimes even means that National Human Rights Institutions (NHRIs) will exercise quasi-jurisdictional functions (FRA, 2016; Manca, 2017; MDAC, 2011; OHCHR, 2009; OHCHR – Europe Regional Office, 2014). 3. Supervision means that the monitoring framework shall be in charge of evaluating national disability policy, legislation and practice in light of the social model and CRPD (Manca, 2017; MDAC, 2011; OHCHR, 2009). In its ‘Guidelines on independent monitoring frameworks and their participation in the work of the Committee on the Rights of Persons with Disabilities’, the CRPD Committee sets out what Hoefmans (2020) has identified as core principles and essential tasks to be carried out by monitoring mechanisms. The principal tasks include harmonizing national legislation with the CRPD standard, raising awareness about the social model, and investigating potential human rights violations (CRPD Committee, 2016, Annex). In terms of principles, States are required to consider ‘the principles relating to the status and functioning of national institutions for protection and promotion of human rights’. This phrase has been understood by scholars (Aichele, 2018; de Beco & Hoefmans, 2013), human rights bodies (OHCHR, 2009), and the CRPD Committee in its Rules of Procedure (2016, Annex, para. 3) as a reference to the Paris Principles.4 The Paris Principles set out some characteristics that should be fulfilled, in general, by Human Rights Institutions. Of these characteristics, three are particularly relevant for the independence of monitoring mechanisms in the CRPD context. NHRIs should be (i) created via law, so that their mandate is safeguarded from political interference (Principle A.2; Aichele, 2018; FRA, 2016; OHCHR – Europe Regional Office, 2014); (ii) intended to be independent mechanisms, for which they require sufficient funding and autonomy (Principles B.2 and B.3; Manca, 2017; OHCHR, 2009; OHCHR – Europe Regional Office, 2014); and (iii) intended to be plural, to be duly representative of society and, in this case, of persons with disabilities (Principle B.1). States may opt to designate an existing NHRI that is compliant with the Paris Principles as a monitoring mechanism (CRPD Committee, 2016, Annex), or encourage a newly formed monitoring mechanism. In either case, the designated mechanism (ad hoc or an NHRI) should adhere to the Paris Principles and the tasks outlined, ensuring that the CRPD is applied at the national level (CRPD Committee, 2016, Annex). In that sense, discussion has been raised with regards to whether just one institution within the monitoring framework should fulfil the Paris Principles, or every single institution in the mechanism should do so. Some argue that to truly have an independent monitoring system, every institution within the system must also be independent (de Beco & Hoefmans, 2013; FRA, 2016; MDAC, 2011). Others argue that it appears that it would be sufficient for one institution to be fully independent, and for others to be independent in their CRPD monitoring activities (Aichele, 2018). However, this last model raises the question of whether the lack of independence of one actor would compromise the independence of the entire system (de Beco & Hoefmans, 2013).

From international standard to national practice  239 2.3

‘Nothing About Us Without Us’ – a Brief Mention of the Role of Civil Society in Implementation and Monitoring

Article 33 also demands the inclusion of persons with disabilities and DPOs in the monitoring process. It can be read as supplementary to Article 4.3, which establishes the right of persons with disabilities to actively participate in decision-making processes concerning issues relating to persons with disabilities through their organizations. As such, the CRPD Committee states that DPOs should be ‘involved and participate fully in the monitoring process’ (2016, Annex para. 3). In order to fulfil this obligation, we consider that Article 33.3 implies that the monitoring mechanism should: (i) include the DPO’s representative in its composition; and (ii) operate under a consultation process scheme. This means that the mechanism should consider the opinion of the DPO’s representative, following the guarantees of a consultation process. Thus, the process should be conducted in good faith, be accessible and include reasonable adjustments when needed (CRPD Committee, 2018; de Beco & Hoefmans, 2013; MDAC, 2011; OHCHR – Europe Regional Office, 2014). States need to work so that organizations of persons with disabilities show up to these spaces with the ability to be heard and negotiate. This requires investing in capacity building, resource availability, and strengthening DPOs as leading institutions (CRPD Committee, 2018). In doing so, special attention should be placed towards structural discrimination that can be replicated within DPOs. Often, the voices of women, children, youth, ethnic minorities, and persons with cognitive and psychosocial disabilities will not be adequately represented by mainstream DPOs (CRPD Committee, 2018). As a result, the CRPD Committee has recommended, in its country observations, that States make special efforts to engage these groups in participation spaces. Given the notion of meaningful participation in every step of the political cycle, we argue that this participation should extend not only to the monitoring mechanism, but also to the implementation mechanism. We acknowledge that this is not explicitly stated in the text of the Convention or in the Concluding Observations of the Committee. However, since Article 4.3, State parties must allow for full and meaningful participation of persons with disabilities in all aspects of the political cycle (Manca, 2017; MDAC, 2011; OHCHR, 2009), avoiding purely formal consultations (CRPD Committee, 2018). We argue that this must necessarily extend to the implementation of the CRPD as one of the crucial stages of the political cycle when seen from the point of view of persons with disabilities.

3.

THE FRAGMENTED REALITY OF IMPLEMENTATION AND MONITORING MECHANISMS IN LATIN SOUTH AND CENTRAL AMERICA

The CRPD’s legal framework makes it clear that making Article 33 a reality is a complex issue, both in terms of legal design and practical implementation. In a context like LSCA, where inequality, poverty and disability are highly connected (Pinilla-Roncancio, 2015), changes in policy are urgent. This is where a construct like the one described in the previous section should, in theory, be especially useful as a means to ensure effective enjoyment of rights. However, as shown below, this has not proven to be the case. To evaluate existing implementation and monitoring mechanisms, and ensure consistency in the information analysed across countries, we limited our sources to a literary review of three sets of information: national legislation and policies, CRPD Committee Observations and Country

240  Research handbook on disability policy Table 19.2

Implementation mechanisms in LSCA countries

State party

Implementation mechanism

Argentinaa

Agencia Nacional de la Discapacidad (ANDIS)

Bolivia

Consejo Nacional de Personas con Discapacidad (CONALPEDIS)

Brazilc

Conselho Nacional dos Direitos da Pessoa com Deficiência (CONADE)

Chiled

Servicio Nacional de la Discapacidad (SENADIS)

b

Consejo Nacional de la Discapacidad (CND)

Colombiae

Consejo Nacional de Personas con Discapacidad (CONAPDIS) Consejo Nacional de Igualdad de Discapacidades (CONADIS)

Placement within State structure Decentralized organ within State Secretariat Ministry of Justice Ministry of Women, Family and Human Rights Ministry of Family and Social Development Ministry of Health and Social Protection

Participation of DPOs Advisory Board made up of DPOs and NGOs. Executive Board made up of nine representatives or persons with disabilities chosen by a national confederation. Blended composition, with an equal number of government and civil society representatives. Advisory Board made up of five DPO representatives. Blended composition, with six representatives of DPOs.

Ministry of Work and Social Security

Four of its 11 members are DPOs representatives.

Autonomous

Half of the Council members must be civil society representatives.

El Salvador

Consejo Nacional para la Inclusión de las Personas con Discapacidad (CONAIPD)

Autonomous

Guatemalai

Consejo Nacional para la Atención de Personas con Discapacidad (CONADI)

Half of the Council members must be civil society representatives. Allows for the participation of parents’ or relatives’ organizations.

Autonomous

Half of the Council members must be civil society representatives.

Costa Ricaf Ecuadorg

h

Hondurasj

Mexico

k

Nicaragual

Panamam

Dirección General para el Autonomous Desarrollo de las Personas con organ within State Discapacidad (DIGEDEPDI) Secretariat

Advisory Council of 13 persons with three representatives from DPOs, two from organizations that work on disability issues and two from parents and relatives’ organizations.

Consejo Nacional para el Advisory Assembly with Desarrollo y la Inclusión de Autonomous representation of DPOs and NGOs las Personas con Discapacidad chosen by state agents. (CONADIS) Consejo Nacional de Council has participation of DPO Promoción y Aplicación de Ministry of Health and a representative from parents los Derechos de las Personas and relatives’ organizations. con Discapacidad Executive Board has participation of two representatives of DPO, two representatives of parents and Secretaría Nacional de Autonomous relatives’ organizations and one Discapacidad (SENADIS) representative from organizations that work for disability issues.

From international standard to national practice  241 State party Paraguayn Peru

Uruguay

Venezuela

Implementation mechanism

Placement within State structure

Participation of DPOs

Secretaría Nacional por los Advisory Board of 17 members. Derechos de las Personas con Cabinet office Seven of them must come from Discapacidad (SENADIS) DPOs. Consejo Nacional para la Ministry of Women Advisory Board of representatives Integración de la Persona con and Vulnerable of civil society organizations. Discapacidad (CONADIS)o Populations No specific participation mechanisms. Aside from PRONADIS, there is a ‘Comisión Nacional Honoraria de la Discapacidad’, that advises Programa Nacional de government on disability. Its Ministry of Social Discapacidad (PRONADIS)p Executive Board has participation Development of every confederation of DPOs and allows for the participation of organizations of relatives and guardians of persons with disabilities. Vice-Ministry Consejo Nacional para las of the Supreme No information available. Personas con Discapacidadq Happiness for the People

Notes: a Decree 698/2017, 2017; b Law 223, 2012; c Decree 10.177, 2019; d Law 20.422, 2010; e Law 1145, 2007; f Law 9303, 2015; g Disabilities Act, 2012; h Decree 672, Inclusion of Persons with Disabilities, 2020; i Rules to Decree 135-96; j Decree No. 160-2005, 2005; k General Law of Persons with Disabilities, 2011; l Law 763, 2011; m Law 23, 2007; n Decree 10514, 2013; o Law 29973, 2012; p Law 18172, 2007; q Official Gazette No. 38.598, year unspecified.

Reports. Analysis was carried out through a series of matrices that allowed for the verification of each element of monitoring and implementation obligations in existing national legislations. For communication purposes, these matrices have been condensed into Tables 19.2 and 19.3. However, to ensure rigour in the analysis, the original matrices included a wider set of data points.5 Matrices included repeating questions reviewed by several people to ensure consistency in the data. Additionally, results were validated with experts from different countries, including Argentina, Chile, Colombia, Costa Rica, Ecuador, El Salvador and Guatemala. Our results show that with regards to implementation mechanisms, LSCA States have usually relied on Disability Councils as a means to fulfil the obligation set out in Article 33.1 CRPD. At the monitoring level, the regional picture shows a much more fragmented landscape, with States adopting ad hoc institutions to fulfil the monitoring and participation obligations set out in Articles 33.2 and 33.3 CRPD. 3.1

The Implementation Mechanism

Our analysis shows that, as of 2021, all States in LSCA have designated implementation mechanisms, as per Article 33.1 CRPD. Though named differently, these mechanisms fall under the broad category of Disability Councils. The individual names will vary between ‘Council’, ‘Secretariat’ or ‘Agency’, with a common abbreviation being ‘CONADIS’ (a shorthand for National Council on Disability in Spanish). These CONADIS have been adopted as the focal point for implementation in 16 countries in LSCA, except for Honduras, which has designated

242  Research handbook on disability policy Table 19.3

Monitoring mechanism in LSCA countries

State party

Implementation mechanism

Argentinaa

Boliviab

Placement within State structure Observatorio Nacional Agencia de la Discapacidad Nacional de la Discapacidad (ANDIS) *Implementation mechanism Ombudsman (NHRI) Independent

Participation of DPOs

CRPD Committee response

No provisions.

Rejected because of the lack of independence.h

No provisions.

Accepted by the Committee.i We dispute this because of the lack of DPO participation. Rejected because of the lack of independence.j

Conselho Nacional Ministry Blended dos Direitos da Pessoa of Women, composition. com Deficiência Family and (CONADE) Human Rights Chile Not designated Procuraduría de Colombiad Autonomous DPOs are part of the Derechos Humanos mechanism. Ombudsman Comptroller General of the Republic DPOs Costa Ricae Consejo Nacional Ministry Four of its 11 de Personas con of Work members are DPOs Discapacidad and Social representatitves. (CONAPDIS) Security Ecuador Not designated El Salvadorf Procuraduría para Prosecutor’s DPOs are part of the la Defensa de los Office mechanism, as they Derechos join the Procuraduria at the Permanent Forum for Persons with Disabilities. Guatemalag Comisión Presidencial Presidency No provision. Coordinadora de la Política del Ejecutiva en Materia de Derechos Humanos (COPREDEH) Uruguay Comisión Nacional Ministry DPOs have Honoraria de la of Social representation Discapacidad Development within the CNDH as (CNDH) designated members. Brazilc

Rejected because the Health, Social Security and Disability Ombudsman are part of the mechanism, reinforcing the medical model of disability.k No Concluding Observations yet.

Rejected because of the lack of independence, resources and mechanisms for the involvement of DPOs.l Rejected without an explicit reason.m

Rejected as it also operates as the implementation mechanism. The State provision is unclear on this end.

Notes: a Decree 806/2011, 2011, article 3; b Law 870, 2016; State party’s response to the CRPD Committee’s List of Issues, 2016, para. 102; c Decree 7256, 2010; State party report to the CRPD Committee, 2014, para. 260; d Law 1618, 2013, article 68; State party report to the CRPD Committee, 2015, para. 261; e Law 9303, 2015; f State party report to the CRPD Committee, 2011, para. 272; g State party report to the CRPD Committee 2015, para. 253; h CRPD Committee. Concluding Observations. Argentina. 19 October 2012, para. 51; i CRPD Committee. Concluding Observations. Bolivia. 4 November 2016, para. 73; j CRPD Committee. Concluding Observations. Brazil. 29 September 2015, paras 58, 59; k CRPD Committee. Concluding Observations. Colombia. 30 September 2016, para. 72; l CRPD Committee. Concluding Observations. El Salvador. 8 October 2013, para. 62; m CRPD Committee. Concluding Observations. Guatemala. 30 September 2016, paras 76–77.

From international standard to national practice  243 a sector of its Human Rights Secretariat. Some of these organs were created before CRPD. However, the structure and functions of these are not different from those that were created after the CRPD ratification. All of them often fulfil roles such as enacting programs to ensure people with disabilities have access to their rights,6 organize access to social benefits,7 push for State compliance with international human rights standards8 and work on inclusion policies.9 CONADIS are also tasked with representing the State parties at the Committee for the Elimination of all Forms of Discrimination against Persons with Disabilities of the Organization of American States. This is the monitoring organ of the Convention on the Elimination of All Forms of Discrimination against Persons with Disabilities, which all LSCA countries have also ratified. In Table 19.2, we have identified the placement of implementation mechanisms in each country, and the legal provision for participations of DPOs in them based on legislation and State party reports. As can be seen, these mechanisms share some features, but diverge on multiple others, especially with regards to their legal status. Are Disability Councils CRPD compliant? The answer remains unclear. On the one hand, human rights bodies and scholars have identified certain common characteristics that implementation mechanisms should have, as outlined in section 2.1. Out of these, all 17 Disability Councils are single government entities (OHCHR, 2009, para. 24). State parties’ reports and national legislation are unclear with regards to the level of direction that Disability Councils have over policy. Despite recommendations leaning towards appointing an actor as a leader in terms of CRPD implementation, the information currently available does not make it clear whether that role falls upon Disability Councils. While recommendations argue that implementation mechanisms should be placed in most departments and all levels of the state apparatus, or at high levels of government to acquire political capital and agenda setting capacity (de Beco, 2011; de Beco & Hoefmans, 2013; OHCHR, 2009), this does not necessarily seem to hold true in LSCA. Of the 17 mechanisms reviewed, eight are autonomous mechanisms, of which three are placed at high levels of government. In Argentina and Honduras, the implementation mechanisms are part of the State Secretariat systems. In Paraguay, SENADIS is part of the Cabinet office, and has been accepted as a valid implementation mechanism by the CRPD Committee. However, autonomy has not necessarily translated into an ability to influence policy, meaningful participation, or access to resources. In countries with autonomous Disability Councils, the CRPD Committee has reported that these have insufficient funding and underqualified personnel and lack influence.10 More broadly, in six LSCA States, implementation mechanisms can be found within social affairs ministries (i.e. Ministry of Women, Ministry of Social Development) or Ministries of Justice or Human Rights, and in four States they can be found within welfare ministries (Health, Labour or Social Security). The latter may be a sign of the prevalence of the medical model in the implementation of disability policy, and the view of persons with disabilities as subjects requiring benefits. It may also reflect the continuation of a historic perception of persons with disabilities as persons reliant on charity (Amponsah-Bediako, 2013; Goodley, 2016). Further, it is interesting to note that the CRPD Committee has provided little guidance on whether Disability Councils are CRPD compliant or not. On the one hand, in its ‘Guidelines on independent monitoring frameworks and their participation in the work of the Committee on the Rights of Persons with Disabilities’, the Committee has referenced Disability Councils as ‘advisory bodies’ that can be involved in implementation processes (2016, Annex). On the other hand, the Committee has rarely provided observations or recommendations to State parties when they have reported implementation mechanisms. Most often, the Committee’s Concluding Observations make no mention of the State’s designated implementation mechanism.11 Of the

244  Research handbook on disability policy 17 LSCA reports analysed, the Committee only expressly commented on three implementation mechanisms: those of El Salvador, Paraguay and Guatemala. Thus, in 2013, the CRPD Committee rejected El Salvador’s implementation mechanism (CONAIPD12) without further explanation (para. 67). Recently, El Salvador has adopted a new law on disability, Act 672 of 2020, which introduces some changes in its organic regulations, like the participation of civil society in the Council. This new structure has yet to be reviewed by the CRPD, so it is unclear whether it will be held to be CRPD compliant. In 2013, Paraguay’s SENADIS13 was accepted as an implementation mechanism, in coordination with the National Commission on the Rights of Persons with Disabilities.14 This is the only Disability Council explicitly accepted by the Committee from the countries covered by this paper. In the case of Guatemala, the CRPD Committee acknowledged the role of CONADI15 as an implementation mechanism and focal point but urged Guatemala to strengthen its resources and funding.16 DPOs and NGOs legally have a role in all Disability Councils under study. As mentioned before, the participation of DPOs is fundamental for an inclusive, comprehensive design of public policies with a disability approach that is compliant to CRPD standards. However, even though the CRPD Committee seems to allude to the importance of participation in Disability Councils in General Comment 7 (2018, para. 31, 94), it does not provide insight on the role that participation should play on this obligation of Article 33. One area where the CRPD Committee and national legislation could both be clearer on is how participation comes to life. Some issues to be considered could be internal elections within the mechanism, how decisions on budget allocation should be made and how internal policies should be framed. As can be noted from the prior paragraphs, the CRPD Committee has been vague on the expected requirements of an implementation mechanism. States have created these Councils as a space for cooperation with civil society. However, it is not clear which government institutions should be included in these councils. A study of Concluding Observations emitted to LSCA State parties does not provide clear insight on how mechanisms should work, and what characteristics they should have. Further, as we will demonstrate in the following section, the Committee’s Observations have not helped State parties to distinguish between implementation and monitoring mechanisms, as they tend to refer to issues and recommendations regarding both within the same paragraph. 3.2

The Monitoring Mechanism

As we have stated, the CRPD Committee guidelines regarding the implementation mechanism are notably deficient. The scenario, however, does not improve when we consider the monitoring mechanism. The analysis regarding lack of clarity goes beyond LSCA’s CONADIS, which in fact, are not competent in monitoring matters. Nevertheless, if we look at global numbers, we find that the Committee has only acknowledged monitoring mechanisms from 31 States.17 Of those countries, 13 designated an existing NHRI, 11 designated a mechanism formed by multiple institutions and seven designated committees dedicated to working on disability issues or observatories, or some combination of the aforementioned. This, of course, gives no clear indicator of the type of structure that is expected from a State party. More so, when the Committee has acknowledged a monitoring mechanism, it has recommended that the State party increase its independence18 and funding,19 clarify its functions20 and align its institutions with the Paris Principles21 to comply with Article 33 CRPD. Aside

From international standard to national practice  245 from these recommendations, a CRPD-compliant mechanism would have to allow for the participation of DPOs, in order to fulfil the obligation, set forth in Article 33.3, regarding political participation. In the LSCA context, it is hard to think of a system of multiple fully independent institutions that involves DPOs. As we see in Table 19.3, in most of these countries, monitoring functions have been assigned to programs within Ministries. In a few cases, Ombudsman institutions have been designated as monitoring mechanisms but, due to their institutional nature, these do not allow for DPO participation. Table 19.3 summarizes the monitoring mechanisms designated in the countries under study, as well as their placement within the State structure and the provision for the participation of DPOs. As shown above, of the 17 countries under review, only Bolivia has a monitoring mechanism that has been accepted by the CRPD Committee.22 The mechanism is comprised only of the National Ombudsman. We will dispute this claim with regards to the lack of participation of DPOs in the upcoming paragraphs. Three countries (Chile, Ecuador and Venezuela) have not designated monitoring mechanisms, while four countries (Costa Rica, Mexico, Nicaragua and Peru) have designated mechanisms that are yet to be reviewed by the CRPD Committee. In the remaining nine countries (Argentina, Brazil, Colombia, El Salvador, Guatemala, Honduras, Panama, Paraguay and Uruguay), the CRPD Committee has rejected the mechanism, citing lack of independence and resources (Argentina, Brazil, El Salvador, Honduras, Paraguay, Uruguay) or doing so without express cause (Guatemala, Panama). Interestingly, in the case of Colombia, the monitoring mechanism was considered non-compliant because, by being ascribed to the Ministry of Health, it contributes to the medicalization of disabilities.23 When citing lack of independence, the CRPD Committee has referenced the proximity of the monitoring and implementation mechanisms, and the dependence of monitoring systems on government processes and funding.24 From our review, it appears that despite there not being specific monitoring structures expected of State parties, the Committee leans towards validating the designation of NHRIs or mixed mechanisms that include an NHRI. This may be because NHRIs already tend to satisfy the Paris Principles, especially in the LSCA region, so using these as a monitoring recourse is a more efficient way to ensure the monitoring entity is independent. In fact, it is important to note that in the region, Argentina, Colombia, Chile, El Salvador, Guatemala, Panama, Peru and Uruguay have NHRIs ranked with an ‘A’ by the Global Alliance of National Human Rights Institutions. However, this raises the following question: Would designating NHRIs be compatible with the participation of DPOs? Traditionally, NHRIs have not been built to consider the meaningful participation of DPOs. Because of this, unlike Disability Councils, they do not have spaces like advisory boards and consultation structures that DPOs can be involved in. In this sense, it is important to question what the extent of the obligation set out in Article 33.3 is. As we have mentioned, a monitoring mechanism is a human rights novelty. However, unclear and difficult guidelines may make it difficult for States to comply with the obligation of Article 33.2. The participation principle seems hard to grasp at this level. The activities that would require participation and the way this must be done require further guidance.

246  Research handbook on disability policy

4. CONCLUSIONS Article 33 creates innovative obligations in human rights law. Since implementation and monitoring go beyond the usual obligation of respect and redress, States need to create, adapt and change public policies in different ways. This requires a public policy approach that is uncommon in human rights law. The analysis in LSCA countries allows us to derive some key findings, policy implications and recommendations for further research. One key finding is that the CRPD Committee has not provided clear guidance on what is expected of State parties in order to comply with the obligations derived from Article 33. Some general guidelines, in terms of the hierarchy of the implementation mechanism and independence of the monitoring mechanism, have been clearly stated, but no concrete obligations have been detailed. This makes compliance complex. However, that difficulty has not stopped LSCA countries from trying to formulate their own approach to adopting the Article 33 mechanism. With regards to implementation, State parties in the region have opted to adopt or adapt Disability Councils. These organs have become an important factor in the creation of disability-related public policies because they congregate both State actors and civil society organizations. Nevertheless, their possibility to impact policy decisions usually falls short because of a lack of resources and ability to influence policy actively. Participation is, interestingly, better institutionalized than it is in monitoring mechanisms, because of the structured, institutional nature of the councils. In terms of monitoring, there is no clarity in the process. Putting the system in place appears to have been a fragmented process, with blurred demands and steps. State parties seem to confuse the nature of the mechanism, and the relationship between the monitoring and implementation functions. Similarly, this has led State parties to create institutions, foregoing the possibility of designating existing, successful NHRIs like Ombudsman offices. Moving forward, a fundamental step towards making Article 33 a reality is for international organizations – especially the CRPD Committee – to provide concrete implementation guidelines that are culturally sensitive. Academia and the CRPD Committee need to embrace existing institutions in Global South countries and provide the required guidance to ensure their proper functioning within the CRPD framework. For LSCA State parties, it would be advisable to strengthen Disability Councils, as they are (and should be) the proper spaces for the implementation of the treaty and the participation of DPOs. In terms of monitoring, it would be advisable for State parties in the region to utilize existing NHRIs, which already comply with the Paris Principles. If this option were to be taken, this would require State parties to designate an additional space as part of the monitoring mechanism to allow for the participation of persons with disabilities. As a closing note, it is important to state that the findings presented here are merely literary. Further research would certainly benefit from contrasting the legal design of implementation and monitoring mechanisms with the reality of their work on the ground.

NOTES 1. 2.

Start of endnote. This includes all countries in South and Central America, except Belize, Guyana and Suriname. It does not include the Caribbean. End of endnote. End of endnote. Start of endnote. It should be noted that the authors are not unanimous on their understanding of how the CRPD relates to the understanding of disability. While the idea that the CRPD is built on

From international standard to national practice  247

3. 4. 5. 6.

7. 8. 9.

10. 11.

12. 13. 14. 15. 16. 17.

the theoretical premises of the social model of disability is widely accepted, some argue that the CRPD goes beyond the social model into what has been called the human rights model of disability (Degener, 2017). End of endnote. Start of endnote. Brazil is a dualist State. However, because of the method of approval, the CRPD does have supra-constitutional value in domestic law. End of endnote. Start of endnote. Principles relating to the Status of National Institutions. United Nations General Assembly Resolution 48/134. 20 December 1993. End of endnote. Start of endnote. For a more detailed analysis, see: Bregaglio (2021). End of endnote. Start of endnote. Argentina: Decree 698/2017, article 1; Bolivia: Law 223, 2012, article 45; Brazil: Decree 7256, 2010; Chile: Law 20.422, 2010, articles 61, 62; Colombia: Law 1145, 2007, articles 9, 12; Guatemala: Rules to Decree 135-96, article 9; Mexico: General Law of Persons with Disabilities, 2011, article 39; Panama: SENADIS Strategic Plan; Peru: Law 29973, 2012, article 20; Uruguay: Law 18172, 2007; Venezuela: Official Gazette No. 38.598, year unspecified. End of endnote. Start of endnote. Argentina: Decree 698/2017, article 1; Chile: Law 20.422, 2010, articles 61, 62; Peru: Law 29973, 2012, article 20. End of endnote. Start of endnote. Bolivia: Law 223, 2012, article 45; Brazil: Decree 7256, 2010; Guatemala: Rules to Decree 135-96, article 9. End of endnote. Start of endnote. Brazil: Decree 7256, 2010; Chile: Law 20.422, 2010, articles 61, 62; Colombia: Law 1145, 2007, articles 9, 12; Ecuador: Disabilities Act, 2012, article 89; Guatemala: Rules to Decree 135-96, article 9; Honduras: Decree No. 160-2005, 2005; Mexico: General Law of Persons with Disabilities, 2011, article 39, Panama: SENADIS Strategic Plan; Peru: Law 29973, 2012, article 20; Uruguay: Law 18172, 2007; Venezuela: Official Gazette No. 38.598, year unspecified. End of endnote. Start of endnote. CRPD Committee. Concluding Observations. Guatemala. 30 September 2016, para. 76. End of endnote. Start of endnote. A note must be made here in the cases of Mexico and Nicaragua, States that are yet to undergo review by the Committee. A note must also be made with regards to the cases of Argentina, Costa Rica and El Salvador, all of which have designated new mechanisms yet to be reviewed by the CRPD Committee. End of endnote. Start of endnote. Consejo Nacional para la Inclusión de las Personas con Discapacidad. End of endnote. Start of endnote. Secretaría Nacional de Discapacidad. End of endnote. Start of endnote. Concluding Observations. Paraguay. 15 May 2013, para. 75. End of endnote. Start of endnote. Consejo Nacional para la Atención de la Persona con Discapacidad. End of endnote. Start of endnote. CRPD Committee. Concluding Observations. Guatemala. 30 September 2016, para. 76. End of endnote. Start of endnote. Concluding Observations. Austria. 30 September 2013, para. 53; Concluding Observations. Algeria. 21 September 2018, para. 57; Concluding Observations. Armenia. 8 May 2017, para. 58; Concluding Observations. Bolivia. 4 November 2016, para. 74; Concluding Observations. Cyprus. 8 May 2017, para. 66; Concluding Observations. Poland. 21 September 2018, para. 56; Concluding Observations. Macedonia. 29 October 2018, para. 58; Concluding Observations. Sudan. 10 April 2018, para. 68; Concluding Observations. Latvia. 10 October 2017, para. 55; Concluding Observations. United Kingdom of Great Britain and Northern Ireland. 3 October 2017, para. 71; Concluding Observations. Morocco. 25 September 2017, para. 63; Concluding Observations. Portugal. 20 May 2016, para. 65; Concluding Observations. Uganda. 12 May 2016, para. 65; Concluding Observations. Qatar. 2 October 2015; para. 60; Concluding Observations. Korea. 29 October 2014, para. 62; Concluding Observations. European Union. 2 October 2015, para. 77; Concluding Observations. Germany. 13 May 2015, para. 62; Concluding Observations. Honduras. 4 May 2017, para. 70; Concluding Observations. Algeria. 21 September 2018, para. 57; Concluding Observations. Oman. 17 April 2018, para. 60; Concluding Observations. Luxembourg. 10 October 2017, para. 59; Concluding Observations. Ethiopia. 4 November 2016, para. 70; Concluding Observations. Belgium. 28 October 2014, para. 49; Concluding Observations. Ecuador. 27 October 2014, para. 55; Concluding Observations. Tunisia. 13 May 2011, para. 42;

248  Research handbook on disability policy

18.

19.

20. 21.

22. 23. 24.

Concluding Observations. Croatia. 15 May 2015, para. 53; Concluding Observations. European Union. 2 October 2015, para. 77; Concluding Observations. Malta. 17 October 2018, para. 50; Concluding Observations. Lithuania. 11 May 2016, para. 68; Concluding Observations. Kenya. 30 September 2015, para. 60; Concluding Observations. Mexico. 27 October 2014, para. 62; Concluding Observations. Paraguay. 15 May 2013, para. 76; Concluding Observations. Hungary. 22 October 2012; Concluding Observations. Spain. 19 October 2011, para. 6; Concluding Observations. Germany. 17 April 2015, para. 62. End of endnote. Start of endnote. CRPD Committee. Concluding Observations. Poland. 21 September 2018, para. 56; Concluding Observations. United Kingdom of Great Britain and Northern Ireland. 3 October 2017, para. 71; Concluding Observations. Honduras. 4 May 2017, para. 70; Concluding Observations. Ecuador. 27 October 2014, para. 55; Concluding Observations. Austria. 30 September 2013, para. 53; Concluding Observations. Algeria. 21 September 2018, para. 57. End of endnote. Start of endnote. CRPD Committee. Concluding Observations. Poland. 21 September 2018, para. 56; Concluding Observations. Macedonia. 29 October 2018, para. 58; Concluding Observations. Oman. 17 April 2018, para. 60; Concluding Observations. Sudan. 10 April 2018, para. 68; Concluding Observations. Latvia. 10 October 2017, para. 55; Concluding Observations. Luxembourg. 10 October 2017, para. 59; Concluding Observations. United Kingdom of Great Britain and Northern Ireland. 3 October 2017, para. 71; Concluding Observations. Morocco. 25 September 2017, para. 63; Concluding Observations. Armenia. 8 May 2017, para. 58; Concluding Observations. Cyprus. 8 May 2017, para. 66; Concluding Observations. Portugal. 20 May 2016, para. 65; Concluding Observations. Uganda. 12 May 2016, para. 65; Concluding Observations. Qatar. 2 October 2015; para. 60; Concluding Observations. Korea. 29 October 2014, para. 62; Concluding Observations. Ecuador. 27 October 2014, para. 55; Concluding Observations. European Union. 2 October 2015, para. 77; Concluding Observations. Germany. 13 May 2015, para. 62; Concluding Observations. Bolivia. 4 November 2016, para. 74. End of endnote. Start of endnote. CRPD Committee. Concluding Observations. Morocco. 25 September 2017, para. 63; Concluding Observations. Mexico. 27 October 2014, para. 62. End of endnote. Start of endnote. CRPD Committee. Concluding Observations. Oman. 17 April 2018, para. 60; Concluding Observations. Luxembourg. 10 October 2017, para. 59; Concluding Observations. Honduras. 4 May 2017, para. 70; Concluding Observations. Ethiopia. 4 November 2016, para. 70; Concluding Observations. Portugal. 20 May 2016, para. 65; Concluding Observations. Qatar. 2 October 2015; para. 60; Concluding Observations. Belgium. 28 October 2014, para. 49; Concluding Observations. Ecuador. 27 October 2014, para. 55; Concluding Observations. Tunisia. 13 May 2011, para. 42; Concluding Observations. Croatia. 15 May 2015, para. 53; Concluding Observations. Algeria. 21 September 2018, para. 57; Concluding Observations. European Union. 2 October 2015, para. 77. End of endnote. Start of endnote. CRPD Committee. Concluding Observations. Bolivia. 4 November 2016, para. 73. End of endnote. Start of endnote. CRPD Committee. Concluding Observations. Colombia. 30 September 2016, para. 72. End of endnote. Start of endnote. CRPD Committee. Concluding Observations. Argentina. 19 October 2012, para. 51; CRPD Committee. Concluding Observations. Honduras. 4 May 2017, paras 67, 68; CRPD Committee. Concluding Observations. Paraguay. 8 October 2013, p. 7. End of endnote.

REFERENCES Aichele, V. (2018). Art. 33: National implementation and monitoring. In I. Bantekas, M. Ashley Stein, & D. Anastasiou (Eds.), The UN Convention on the Rights of Persons with Disabilities. A commentary (pp. 978–1011). Oxford University Press. Amponsah-Bediako, K. (2013). Relevance of disability models from the perspective of a developing country: An analysis. Developing Country Studies, 3(11), 121–133. https://core.ac.uk/download/pdf/ ​ ​ ​ ​ ​ ​ 234681343.pdf ​

From international standard to national practice  249 Bregaglio, R. (2021). Marco Legal de los Derechos de las Personas con Discapacidad: América Latina y El Caribe. Inter-American Development Bank. https://publications.iadb.org/publications/ ​ ​ ​ ​ ​ spanish/document/Marco-legal-de-los-derechos-de-las-personas-con-discapacidad-America-Latina-y ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -el-Caribe.pdf ​ ​ Committee on the Rights of Persons with Disabilities. (2013, October 8). Concluding Observations on the initial report of El Salvador. CRPD/C/SLV/CO/1. United Nations. https://docstore.ohchr.org/ ​ ​ ​ ​ SelfServices/FilesHandler.ashx?enc=6QkG1d%2fPPRiCAqhKb7yhstksiS6LWF8TU4o56WJXMhK ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ cwRp7hBWgrY38CDaU0Xb%2bUphmF3HheW5A0FlNbO3gvWh2XuL4XameBMIb4TcxPJOw ​ ​ ​ ​ ​ ​ ​ h14jxaJxLaL2HwrThEIj Committee on the Rights of Persons with Disabilities. (2016, October 10). Rules of procedure. Annex. CRPD/C/1Rev.1. United Nations. https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/ ​ ​ ​ ​ ​ ​ ​ TBSearch.aspx?Lang=en&TreatyID=4&DocTypeID=65 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Committee on the Rights of Persons with Disabilities. (2018, November 9). General comment No. 7 (2018) on the participation of persons with disabilities, including children with disabilities, through their representative organizations, in the implementation and monitoring of the Convention. Advance Unedited Version. CRPD/C/GC/7. United Nations. https://digitallibrary.un.org/record/3899396?ln= ​ ​ ​ ​ ​ ​ ​ ​ en de Beco, G. (2011). Article 33(2) of the UN Convention on the Rights of Persons with Disabilities: Another role for national human rights institutions? Netherlands Quarterly of Human Rights, 29(1), 84–106. https://www.corteidh.or.cr/tablas/r25910.pdf ​ ​ ​ ​ ​ ​ ​ de Beco, G., & Hoefmans, A. (2013). National structures for the implementation and monitoring of the UN Convention on the Rights of Persons with Disabilities. In G. de Beco (Ed.), Article 33 of the UN Convention on the Rights of Persons with Disabilities: National structures for the implementation and monitoring of the Convention (pp. 9–66). Martinus Nijhoff Publisher. https://doi.org/10.1163/ 9789004220829_003 ​ de Beco, G., & Murray, R. (2014). A commentary on the Paris Principles on National Human Rights Institutions. Cambridge University Press. https://doi.org/10.1017/CBO9781139565325 ​ ​ ​ ​ ​ Degener, T. (2017). A human rights model of disability. In P. D. Blanck & E. Flynn (Eds.), Routledge handbook of disability law and human rights (pp. 31–49). Routledge. European Union Agency for Fundamental Rights (FRA). (2016, May 13). Opinion of the European Union Agency for Fundamental Rights concerning requirements under Article 33(2) of the UN Convention on the Rights of Persons with Disabilities within the EU context. FRA Opinion – 3/2016 – CRPD. FRA. https://fra.europa.eu/sites/default/files/fra_uploads/fra-opinion-03-2016-crpd.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Goodley, D. (2016). Disability studies: An interdisciplinary introduction (2nd edn). Sage. Hoefmans, A. (2020). The EU framework for monitoring the CRPD. In D. Ferri & A. Broderick (Eds.), Research handbook on EU disability law (pp. 71–88). Edward Elgar Publishing. Manca, L. (2017). Article 33. National implementation and monitoring. In V. Della Fina, R. Cera, & G. Palmisano (Eds.), The United Nations Convention on the Rights of Persons with Disabilities: A commentary (pp. 591–606). Springer. Mental Disability Advocacy Center (MDAC). (2011). Building the architecture for change: Guidelines on Article 33 of the UN Convention on the Rights of Persons with Disabilities. https://www.mdac.org/ ​ ​ ​ ​ en/building_the_architecture_for_change_guidelines_on_article_33_of_the_un_convention_on_the ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ _rights_of_people_with_disabilities ​ ​ ​ ​ Mexico Suprema Corte de Justicia de la Nación. Acción de inconstitucionalidad 68/2018. Promovente: Comisión Estatal de Derechos Humanos de San Luis de Potosí (Pleno August 27, 2019). https://sidof .segob.gob.mx/notas/docFuente/5584384 ​ ​ ​ ​ ​ Mexico Suprema Corte de Justicia de la Nación. Acción de inconstitucionalidad 101/2016. Promovente: Comisión Nacional de los Derechos Humanos (Pleno August 27, 2019). https://www.cndh.org.mx/ sites/default/files/resolucion/2019-10/Acc_Inc_2016_101_Demanda.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Mexico Suprema Corte de Justicia de la Nación. Acción de inconstitucionalidad 1/2017. Promovente: Comisión Nacional de los Derechos Humanos (Pleno October 1, 2019). https://www.dof.gob.mx/nota _detalle.php?codigo=5586715&fecha=18/02/2020 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Office of the High Commissioner for Human Rights. (2009, December 22). Thematic study by the Office of the United Nations High Commissioner for Human Rights on the structure and role of national

250  Research handbook on disability policy mechanisms for the implementation and monitoring of the Convention on the Rights of Persons with Disabilities. A/HRC/13/29. Human Rights Council. United Nations. https://undocs.org/A/HRC/13/29 Office of the High Commissioner for Human Rights – Europe Regional Office. (2014). Study on the implementation of Article 33 of the UN Convention on the Rights of Persons with Disabilities in Europe. United Nations. Oliver, M., & Barnes, C. (2012). The new politics of disablement. Palgrave Macmillan. Palacios, A. (2008). El modelo social de discapacidad: Orígenes, caracterización y plasmación en la Convención Internacional sobre los Derechos de las Personas con Discapacidad. Cinca. Pinilla-Roncancio, M. (2015). Disability and poverty: Two related conditions. A review of the literature. Journal of the Faculty of Medicine (Revista de La Facultad de Medicina), 63(3Sup), 113–123. https:// doi.org/10.15446/revfacmed.v63n3sup.50132 ​ ​ ​ ​ ​ ​ Sabatello, M., & Schulze, M. (Eds.). (2013). Human rights and disability advocacy. University of Pennsylvania Press. Shelton, D. L. (2011). International law and domestic legal systems: Incorporation, transformation, and persuasion (introduction). Oxford University Press. https://scholarship.law.gwu.edu/cgi/viewcontent ​ ​ ​ ​ ​ ​ ​ .cgi?article=1389&context=faculty_publications ​ ​ ​ ​ ​ ​ ​ ​

20. Narrative 6: Affection and emancipation: the friendship of four disabled women1 Karla Garcia Luiz, Laureane Marília de Lima Costa, Mariana Lúcia Agnese Costa e Rosa and Thaís Becker Henriques Silveira

Once upon a time there was a city without holes.2 (Alice Rosa Bacelar)

We, Karla, Laureane, Mariana and Thais, four women with disabilities, are writing this letter. We are from different regions of Brazil and our meeting took place virtually, from the time we militated together in the Helen Keller Feminist Collective of Women with Disabilities (CFHK), except for Karla and Thais, who live in the same state and had already known each other from the academic context. Before reporting on how this meeting enhances the transformation of the descriptive experience of disability into a political experience, as Mia Mingus3 teaches us, we would like to share a little of the history of each one of us, understanding the places from which we started to build this relationship and the path we followed together. I, Karla, was born with a physical disability due to Congenital Multiple Arthrogryposis. I am a 38-year-old heterosexual cisgender woman with white skin, and grew up in a small town on the southern coast of Brazil. I have a complex dependency and I need care for my activities of daily living. I am a psychologist and a federal civil servant in a secondary, technical and higher education institution (IFSC). I am currently doing my PhD at the Federal University of Santa Catarina. My studies and professional performance are aligned with the perspective of Feminist Disability Studies and Disability Justice. More recently, I became the mother of little Helena and I have been living experiences from my place as a mother with a disability. As for me, Laureane, I was born with a physical disability due to the genetic disease Spinal Muscular Atrophy, being the only person with disability in my family. I am a psychologist and have worked mainly training professionals in Health and Education for anti-ableist action. Recently, I defended my Master’s in Education at the Federal University of Jataí, researching the dialogue between the fields of Emancipatory Sexual Education and Feminist Disability Studies. I am a cisgender, heterosexual, white-skinned, feminist, working-class woman. I have a high level of physical impairment and the maintenance of both my active professional and my academic life, as well as my survival, depends on my family’s caring relationships. Some people consider such care relationships a “proof of unconditional love”, and others consider it a “painful sacrifice”, but I consider it a demonstration of the absence of the State, which does not prioritize the establishment of a public policy of care. In this meeting of the four friends, I have learned that disability can be not only tolerated, but also loved. I, Mariana, am a 44-year-old woman, white-skinned, cisgender, and was born and have been living in Belo Horizonte (MG). I am a journalist by graduation – I currently work as a Communication professional in a technology company – but I am a popular educator. In this field, I work as a trainer of professionals in the field of Education and as a mobilizer for families of people with disabilities, in order to guarantee access to Education, as a fundamental 251

252  Research handbook on disability policy right, for all children and young people with disabilities. The interest in this work came with the birth of my daughter Alice, now 8 years old. Alice has neuromotor dysfunction (known as cerebral palsy) and epilepsy, and has a high level of dependence on mediation and care. The title of mother also brought compulsory militancy, so that both my daughter and I have assured rights and decent living conditions. More recently, I have also become a visually impaired woman. My residual vision allows me to carry out activities with relative autonomy, with the support of assistive technologies, which makes me passable, that is, I suffer less prejudice and restriction of rights than my daughter and my friends with whom I write here. Therefore, my affirmation as a woman with disability is, above all, political, and marks the place from which and alongside who I move – as a woman with disability and as the main caregiver of a child with disability. It is, above all, with Karla, Laureane and Thais that I have been learning to do this with responsibility and affection. Finally, me, Thais, a 28-year-old white middle-class cisgender woman. I have a degree in Law from the Federal University of Santa Catarina and a Master’s Degree in Human Rights from the University of São Paulo. At the age of 20, I became a woman with disability. I use a wheelchair and I remember hearing for a long time from some “professionals” that I was in the process of denying my disability, for not being sad (or “grieving”) when I started to experience it. I know, however, that this “becoming” had as reference colleagues with disabilities who, throughout my educational process, from basic education to graduation, enabled me to understand disability from the social model – even if, at the time, without naming it. I also depend on the care of others – especially my mother – to carry out my activities of daily living. Today, I live, work and study about disability, especially its intersection with gender, based on Feminist Disability Studies. I love reading, listening to music and I believe in affection as a revolutionary and emancipatory act – what I learned from Karla, Laureane and Mariana. As we mentioned before, we militated together in CFHK for a while and, after most of us left this organized space, the four of us stayed in a WhatsApp group as a way to maintain the bond of friendship. At that time, we did not imagine that the group would become a space not only for sharing personal experiences, but also for strengthening our daily coping strategies against ableism. We feel that the group has always been a very welcoming space for listening, not only with regard to friendship in sharing everyday situations – such as, for example, when we exchange everyday experiences, if the week is quiet or with more demands for study/work, or in family experiences, if someone became ill or has already recovered – but also in sharing a suffering produced by different oppressive situations – such as, when we report ableist expressions that cross the academic, professional and care contexts, impolite comments of health professionals and invasive attitudes of strangers that do not usually happen to people without disabilities – on issues involving the fact that we are women with disabilities and how much this relationship politicizes disability, as it mobilizes and engages us in the political and collective struggle. We recognize that, in addition to the descriptive experience of disability, our intersectional feminist awareness drives us to the construction of the political experience of incorporating the identity of disability in order to face the tactics of dispersion and emulation of the policy of ableism, pointed out by Campbell.4 Our meeting made us embody one of the “key ideas” of the feminist movement: the personal is political. Here we learn that affection can be political, as we call for contextual changes that will be beneficial to those we love – Karla, Laureane, Mariana, Thais, Alice and Helena – and to those we don’t know – millions of girls and women with disabilities, their daughters and caregivers of people with disabilities. We have also learnt that political struggle can be loving,

Narrative 6: Affection and emancipation  253 as we welcome our pain collectively – sometimes saddening us together, sometimes angering us together, waiting for the necessary time for our recovery and then rejoicing together for what we can do to intervene in reality – rather than charging for immediate coping action at any cost. Even without intending to turn our friendship into a political space, we realize that the intersection of gender and disability politicizes it. Sometimes, we were told that we should not be close to other people with disabilities, after all, that way we would be “drawing attention to the disability”, highlighting it, putting it in evidence, which, in a compulsory able-bodied society like ours, should be avoided to the greatest extent possible. We realize, however, that this is a strategy to keep us apart from each other. A strategy that finds foundation in the recognition of the revolutionary potential that our meeting has. Which knows that the love shared between us strengthens us and teaches us that our body is power and our union, impulse. We often share situations that make us feel lonely, exhausted, insecure, questioning ourselves, such as whether or not we are exaggerating when we react to ableist speech and actions, or whether we would be less activistic because we suffer for them. When we share, we realize that these feelings are collective and, even without pretence, naming them we managed, each one in its own time, to re-signify them and, thus, we strengthened ourselves for political action. In our experience together, we have learnt to name what violence is with the same intensity with which we have learnt to recognize the security of affection and that is why we have started, together, to imagine and create a city without holes – here understood as inequalities – as Alice invited us to while learning to write.

Figure 20.1

Karla Garcia Luiz and Helena Garcia

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Figure 20.2

Thais Becker Henriques Silveira

Figure 20.3

Mariana Lúcia Agnese Costa e Rosa and Alice Rosa

Narrative 6: Affection and emancipation  255

Figure 20.4

Laureane Marília de Lima Costa

NOTES 1. 2.

3. 4.

Start of endnote. This text was originally written in Portuguese and later submitted for translation into English by Alana Lazaretti Solvalagem. End of endnote. Start of endnote. This was the first sentence in a book written by Alice Rosa Bacelar, during a school activity. Alice was taught to be literate by her mother, Mariana, during the pandemic, at home, and uses alternative communication resources to communicate and write. During the year 2021, she wanted to write a book about her imagination and, from the start, shared the desire for an accessible city based on the social model of disability. End of endnote. Start of endnote. Mingus, Mia. Moving Toward the Ugly: A Policy Beyond Desirability. 2011. ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Available at: https://leavingevidence.wordpress.com/2011/08/22/moving-toward-the-ugly-a-politic -beyond-desirability/ . Accessed: 25 October 2021. End of endnote ​ Start of endnote. Campbell, Fiona Kumari. Exploring Internalized Ableism Using Critical Race Theory. Disability & Society, 23(2), 151–162, 2008. Available at: https:// www .tandfonline .com/ doi/ abs/ 10 .1080/ 09687590701841190. Accessed: 20 October 2021. Campbell, Fiona Kumari. Contours of Ableism: The Production of Disability and Abledness. Palgrave Macmillan, 2009. End of endnote.

21. Decolonizing disability rights policies through indigenous theorization: the case of Zimbabwe Martin Musengi

INTRODUCTION Throughout the world, the status of one’s ‘full membership’ in society is relevant to disability because of the realities ranging from economic exclusion to the questioning of the humanity of people with disabilities. In the global South, people with disabilities struggle to access education, employment, health, recreational and other services. In southern Africa in particular, access to rights are hard-fought through advocacy by disabled people’s organizations (DPOs) and individuals with disabilities. The DPOs seek to overthrow paternalism and the systemic injustices of neo-liberalism brought about by globalization. It is in this context that this chapter explores the inclusiveness of disability rights in Zimbabwe, a country where colonialism introduced much of the global North thinking currently associated with disability rights. In the country’s climate of uncertainty characterized by austerity, hyperinflation, illegal economic sanctions and a global pandemic, valuable indigenous moral knowledge related to disability ought to be recognized anew. This is because many local stakeholders realize the tensions and limitations of operationalizing Northern-grounded disability rights in this climate. In this context, the chapter critically analyzes how the CRPD-linked national disability policy (NDP) offers insights based on indigenous theorization, particularly theorization on conceptions of personhood. To this end, the chapter examines how the NDP recognizes that multiple identity markers intersect with disability to frame the life worlds of persons with disabilities.

CONCEPTUAL FRAMEWORK: INDIGENOUS THEORIZATION OF DISABILITY RIGHTS WITHIN THE CRPD Human rights are at once a utopian ideal and a realistic practice for implementing that ideal. In effect, rights advocate treating a person like a human being in order to get a human being. Rights also indicate how to treat someone as a human being. Human rights thus can be seen as a self-fulfilling moral prophecy advocating the treatment of people like human beings, according to an enumerated list, in order to get truly human beings (Donnelly, 2013). This forward-looking moral vision of human nature provides the basis for the social changes implicit in claims of human rights. If the underlying vision of human nature is within the limits of ‘natural’ possibility, and if the derivation of the list of rights is sound, then implementing those rights will make real that previously ideal nature (Donnelly, 2013). The human rights model underlying disability rights argues that human dignity is the anchor norm of human rights so that each individual is deemed to be of inestimable, inherent value and nobody is insignificant regardless of economic or other usefulness (Quinn & Degener, 2002). Degener (2016) explains that human rights are unconditional and so do not require the 256

Decolonizing disability rights policies through indigenous theorization  257 absence of impairment. The foregoing is consistent with Donnelly’s (2013) position that the very humanity of people should guarantee their membership in society since human rights are literally the rights that one has simply because one is a human being, thereby implying the equality, inalienability and universality of rights. Since one cannot stop being human, one either is or is not a human being, and therefore has the same human rights as everyone else or none at all. On the basis of this understanding of rights, the UN Convention on the Rights of People with Disabilities (United Nations, 2006) appears to argue the indivisibility of civil, political, economic and social rights as human rights. An undue categorization of rights results in the extremist position of rights absolutism versus cultural relativity which unnecessarily magnifies the conflict between the universalism of rights and cultural sensitivity. The indivisibility of human rights trumps the universalist versus cultural sensitivity question. The argument is that human rights are probably the most significant political force shaping the life experience of people with disability (Perlin, 2013) and therefore should not be unduly categorized. The political implications of indivisible human rights being equal, inalienable and universal help to progressively realize rights for people with disabilities, based on cultural sensitivity on what is human nature. In Africa, the underlying vision of human nature is captured in The Africa We Want: Agenda 2063 (African Union (AU), 2015) and the African Charter on the Rights of Persons with Disabilities (AU, 2018). One of the key aspirations of Agenda 2063 (AU, 2015) is shared prosperity and well-being, unity and integration, a continent of free citizens and expanded horizons, where the full potential of women and youth, boys and girls is realized, and with freedom from fear, disease and want. This vision is borne on the back of exemplary successes in the fight against slavery, colonialism and apartheid (AU, 2015). According to AU (2015), by 2063 African countries will be amongst the best performers in global quality of life measures. This will be attained through strategies of inclusive growth, job creation, increasing agricultural production; investments in science, technology, research and innovation; gender equality, youth empowerment and the provision of basic services including health, nutrition, education, shelter, water and sanitation. All kinds of oppression including gender, racial and other forms of discrimination will be addressed (AU, 2015). To this end, Africa shall promote human and moral values based on inclusion and the rejection of all forms of terrorism, religious extremism and other forms of intolerance, irrespective of their motivations. Africa shall be an inclusive continent where no child, woman or man will be left behind or excluded, and all citizens will be actively involved in decision-making in all aspects irrespective of any demographic factor. The AU plan is an endogenous plan for transformation, that is, one that purposefully harnesses the continent’s comparative advantages such as its natural resources, its people, history and cultural values (AU, 2015; Munthali, Nantchouang, Diawara, Chikozho & Nhemachena, 2017). Endogenous transformation implies indigenous African cultural values as epitomized in Ubuntu. Ubuntu is the African philosophy of life and personhood that denies that persons can be defined by focusing on this or that particular physical or psychological characteristic of the lone individual (Menkiti, 2007). As Mbiti (1969) notes, the Ubuntu view of ‘person’ can be summed up in the dictum: ‘I am because we are, and since we are, therefore I am’ (p. 14). On the basis of this Ubuntu dictum, Menkiti (2007) draws the conclusion that, as far as Africans are concerned, the shared experience of the communal world takes precedence over the experience of individual life histories. In Africa, therefore, it is in rootedness in an ongoing human community that the individual comes to see himself as a person, and it is by

258  Research handbook on disability policy first knowing this community as a stubborn enduring fact of the psychophysical world that the individual also comes to know himself as a durable, more or less permanent, fact of this world (Menkiti, 2007). He argues that in the African dictum ‘I am because we are’, the ‘we’ referred to here is not an additive ‘we’ but a thoroughly fused collective ‘we’. It is a collectivity in the truest sense in which there is assumed to be an organic dimension to the relationship between the component individuals. Teffo (1994) explains that this African conception of ‘person’ does not negate individuality, as it just discourages the view that the individual takes precedence over the community. Ndaba (1994) and Shutte (1993) add that such a conception also preserves the ‘other’ in their ‘otherness’ as unique, without letting them slip into the distance. An Ubuntu-based understanding of personhood eschews focusing on impairment or functioning in a person. This is because in Ubuntu a person is defined by reference to the environing community rather than any particular feature of the individual. Therefore, the environing community is an organic collectivity reflective of individuals. According to Menkiti (2007), this contrasts with the global North understanding of community, where there is a non-organic bringing together of atomic individuals into a unit more akin to an association than a community. In the latter understanding of community, individual capacity is given prominence in ways that may influence whether and how an individual is accorded human rights. It can therefore be argued that an Ubuntu-based organic conception of community in which individuals are fused equals is more likely to result in all being seen as deserving of human rights and receiving equitable treatment. In support, Mugumbate (2020) has argued that the solidarity associated with Ubuntu ‘enriches’ the helper just as much as the one who is assisted. Similarly, Peta (2022) points out that the NDP calls for the strengthening of training for Village Health Workers on disability issues because they are part of the local community. This is congruent with Donnelly’s (2013) conception of human rights as a self-fulfilling moral prophecy advocating the treatment of all people like human beings. Although compassion, warmth, understanding, caring, sharing and humanness are underscored by most major Eurasian world-views, Ubuntu serves as a distinctly African rationale for these ways of relating to others (Louw, 1995) and may therefore provide pointers on understanding human rights in contexts where community is considered as primary. The primacy of community in Africa is consistent with the international disability protocol that links disability with development, the CRPD (United Nations, 2006). The CRPD appears to be having a significant influence on