The Routledge International Handbook of Children's Rights and Disability [1 ed.] 9781003056737, 9780367521530, 9780367521554

Table of contents :
Cover
Half Title
Series
Title
Copyright
Contents
List of Figures
List of Illustrations
List of Tables
List of Contributors
Acknowledgements
Preface
1 Introduction: Children’s Rights and Disability
Section 1 Legislation and Policy
2 The Human Rights Model for Children with Disabilities
Vignette One
3 For the Full Incorporation of the Rights of Children, with or without Disabilities, Into the Human Rights Model
4 An Analysis of the UNCRPD Concluding Observations on the Rights of Children with Disabilities
5 ‘They still need to listen more’: Working in Partnership with Disabled Young Researchers to Inform and Shape Country Submissions to the UN Committee on the Rights of Persons with Disabilities and UN Committee on the Rights of the Child
6 Human Rights through the Eyes of Children with Disabilities
Vignette Two
7 Developing the Right(s) Approach for Autism
8 Poverty, Deprivation, and Disabled Children’s Right to Citizenship
9 The Care Dependency Grant in South Africa: Challenges on the Road to Inclusive Rights
Section 2 Children’s Voice
10 Children’s Rights, Arts-Based Methods, and Gramsci’s Common Sense: The Possibilities of Freedom
11 Beyond the Spoken Word—Facilitating the Disabled Child’s Voice through the Mosaic Approach
Vignette Three
12 Disabled Children’s Participation in Healthcare Decision-Making
13 Participation of Disabled Children in Health Guidelines Development
14 The Right to an ‘Active Voice’ without Words: Co-Creating Knowledge in Special Schools with Art Research Together
Vignette Four
15 The Rights of the Child when Symbolic Language is out of Reach
16 Do all Children have the Right to Express Views?: Listening to ‘Differently Voiced’ Communicators
Section 3 The Life Course in Childhood
17 Babies with Disabilities and their Entitlement to Imagined Hopeful Futures
18 Is Disability a Justification to undermine the Right to Life?
Vignette Five
19 Down Syndrome Abortion Bans: Law and Ethics
20 Clash of Competing Rights in Surrogacy: Embryos, Foetuses, and Children with a Disability
21 Framing Does Matter: How Health Professionals can Empower Disabled Children and their Families
22 From ‘Retarded’ Education to Authentic Life: A Personal Education Retrospective
Vignette Six
23 Design as an Agent of Children’s Rights?: Inclusive Mobility Design for Children with Disabilities
24 Assistive Technologies as Rights Enablers
25 ‘Look at us . . . We’re Walking’: Parental Advocacy vs a Child’s Privacy in the age of Internet Sharing
26 An Open Exploration around End-of-Life Journeys for Children Facing Terminal Illness/Severe Disability
Section 4 Life Domains in Childhood
27 The Changing Landscape of Inclusive Education: A Shift towards Universal Design for Learning
Vignette Seven
28 ‘Lawfare’ and the Role of Civil Society on Promoting the Inclusive Education Public Policy in Brazil
29 A Certain Kind of Freedom, a Certain Subject of Right: The Disability dispositif of Inclusion and the Government of the Disabled Child in the Italian Education System
30 Social Justice and Language Rights for Deaf Children
31 Through the Eyes of Children with Disabilities: Recognising Children’s Agency in their Play in Inclusive Playspaces
32 Disabled Children’s Access to Music: Music’s Transformational Potential and Music Therapy’s Dis/enabling Role in Making Music Accessible
Vignette Eight
33 The Right to Grow Together: Exploring the Roles of Community Agents in Providing Support for Early Adolescents with Disabilities to make Friends and join Groups
34 Sex, Love, and Human Rights: Sexual Rights for Children and Youth Experiencing Disability
35 Who is Worthy of Rights?: An Analysis of Children Living at the Intersections of Disability, Citizenship, and Migration in the United States and Italy
36 The Right to Safety: Promoting the Authority of Disabled Children to Tackle Rights Resistance
37 Ceci n’est pas un dénouement: This is not a Conclusion
Index

Citation preview

THE ROUTLEDGE INTERNATIONAL HANDBOOK OF CHILDREN’S RIGHTS AND DISABILITY

This handbook provides authoritative and cutting-edge analyses of various aspects of the rights and lives of disabled children around the world. Taking the UN Convention on the Rights of Persons with Disabilities (CRPD) and the UN Convention of the Rights of the Child (CRC) as conceptual frameworks, this work appraises the current state of affairs concerning the rights of disabled children across different stages of childhood, different life domains, and different socio-cultural contexts. The book is divided into four sections: • • • •

Legislation and Policy Children’s Voice The Life Course in Childhood Life Domains in Childhood

Comprised of 37 newly commissioned chapters featuring analyses of UN documents and case studies from Australia, Brazil, Ethiopia, Hong Kong, Italy, the Netherlands, Norway, Papua New Guinea, Serbia, South Africa, Spain, Sweden, the United Kingdom, the United States, and Vanuatu, its multidisciplinary approach reflects the complexities of the lives of disabled children and the multifarious nature of the strategies needed to ensure their rights are upheld. It will be of interest to researchers and students working in disability studies, education, allied health, law, philosophy, play studies, social policy, and the sociology of childhood. It will also be a valuable resource for professionals/practitioners, allowing them to consider future directions for ensuring that disabled children’s rights are realised and their well-being and dignity are assured.

Angharad E. Beckett is Professor of Political Sociology and Social Inclusion and Director of Research and Innovation at the School of Sociology and Social Policy, University of Leeds. She is a member of the interdisciplinary Centre for Disability Studies at the University, where she was for many years a joint Director. Her research interests include disability theory and politics, the resistance practices of the disabled people’s movement, inclusive education, and play/leisure for disabled children and young people. She teaches Disability Studies at undergraduate and postgraduate level and has supervised many doctoral students in this field. She founded and is Co-Chair of the Editorial Executive for the open-access International Journal of Disability and Social Justice. Anne-Marie Callus is Associate Professor in the Department of Disability Studies, Faculty for Social Wellbeing, University of Malta. She lectures, researches, and has published on disability rights, empowerment of persons with intellectual disability, inclusive education and disabled children’s rights, as well as cultural representations of persons with disability. She is Deputy Editor of Disability & Society.

ROUTLEDGE INTERNATIONAL HANDBOOKS

THE ROUTLEDGE INTERNATIONAL HANDBOOK OF NEW CRITICAL RACE AND WHITENESS STUDIES Edited by: Rikke Andreassen, Catrin Lundström, Suvi Keskinen, Shirley Anne Tate ROUTLEDGE HANDBOOK OF ASIAN PARLIAMENTS Edited by: Po Jen Yap and Rehan Abeyratne THE ROUTLEDGE INTERNATIONAL HANDBOOK OF CHILDREN’S RIGHTS AND DISABILITY Edited by: Angharad E. Beckett and Anne-Marie Callus ROUTLEDGE HANDBOOK OF MACROECONOMIC METHODOLOGY Edited by: Jesper Jespersen, Victoria Chick and Bert Tieben

THE ROUTLEDGE INTERNATIONAL HANDBOOK OF CHILDREN’S RIGHTS AND DISABILITY

Edited by Angharad E. Beckett and Anne-Marie Callus

Cover image: Portraits, Ash Loydon First published 2023 by Routledge 4 Park Square, Milton Park, Abingdon, Oxon OX14 4RN and by Routledge 605 Third Avenue, New York, NY 10158 Routledge is an imprint of the Taylor & Francis Group, an informa business © 2023 selection and editorial matter, Angharad E. Beckett and AnneMarie Callus; individual chapters, the contributors The right of Angharad E. Beckett and Anne-Marie Callus to be identified as the authors of the editorial material, and of the authors for their individual chapters, has been asserted in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988. With the exception of Chapter 9 and Chapter 12, no part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Chapter 9 and Chapter 12 of this book are available for free in PDF format as Open Access from the individual product page at www.routledge.com. They have been made available under a Creative Commons AttributionNon Commercial-No Derivatives 4.0 license. Trademark notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. British Library Cataloguing-in-Publication Data A catalogue record for this book is available from the British Library Library of Congress Cataloging-in-Publication Data Names: Beckett, Angharad E., 1976– editor. | Callus, Anne-Marie, editor. Title: The Routledge international handbook of children’s rights and disability / edited by Angharad E. Beckett and Anne-Marie Callus. Description: Milton Park, Abingdon, Oxon ; New York, NY : Routledge, 2023. | Includes bibliographical references and index. Identifiers: LCCN 2022049041 (print) | LCCN 2022049042 (ebook) | ISBN 9780367521530 (hardback) | ISBN 9780367521554 (paperback) | ISBN 9781003056737 (ebook) Subjects: LCSH: Children with disabilities—Legal status, laws, etc. | Children with disabilities—Social conditions. | Children’s rights. Classification: LCC HV888 .R69 2023 (print) | LCC HV888 (ebook) | DDC 362.4083—dc23/eng/20221031 LC record available at https://lccn.loc.gov/2022049041 LC ebook record available at https://lccn.loc.gov/2022049042 ISBN: 978-0-367-52153-0 (hbk) ISBN: 978-0-367-52155-4 (pbk) ISBN: 978-1-003-05673-7 (ebk) DOI: 10.4324/9781003056737 Typeset in Bembo by Apex CoVantage, LLC

CONTENTS

List of Figures xiii List of Illustrations xv List of Tables xvi List of Contributors xvii Acknowledgementsxxix Prefacexxx 1 Introduction: Children’s Rights and Disability Anne-Marie Callus and Angharad E. Beckett SECTION 1

1

Legislation and Policy

15

2 The Human Rights Model for Children with Disabilities Jonas Ruškus

17



37

Vignette One Meet Aurora

3 For the Full Incorporation of the Rights of Children, with or without Disabilities, Into the Human Rights Model Ignacio Campoy Cervera

vii

39

Contents

4 An Analysis of the UNCRPD Concluding Observations on the Rights of Children with Disabilities Bronagh Byrne 5 ‘They still need to listen more’: Working in Partnership with Disabled Young Researchers to Inform and Shape Country Submissions to the UN Committee on the Rights of Persons with Disabilities and UN Committee on the Rights of the Child Anita Franklin and Zara Todd 6 Human Rights through the Eyes of Children with Disabilities Elena Jenkin, Erin Wilson, Robert Campain, Kevin Murfitt, and Matthew Clarke

Vignette Two Meet Charlie

56

73 92

111

7 Developing the Right(s) Approach for Autism Nick Hodge, Patty Douglas, and Bronagh Byrne

113

8 Poverty, Deprivation, and Disabled Children’s Right to Citizenship Edgar Galea-Curmi

129

9 The Care Dependency Grant in South Africa: Challenges on the Road to Inclusive Rights Zara Trafford

147

SECTION 2

Children’s Voice

165

10 Children’s Rights, Arts-Based Methods, and Gramsci’s Common Sense: The Possibilities of Freedom Francesca Bernardi

167

11 Beyond the Spoken Word—Facilitating the Disabled Child’s Voice through the Mosaic Approach Elvira Psaila

188

viii

Contents



Vignette Three Meet Liv

207

12 Disabled Children’s Participation in Healthcare Decision-Making209 Radoš Keravica 13 Participation of Disabled Children in Health Guidelines Development227 Kevin De Sabbata and Elena Syurina 14 The Right to an ‘Active Voice’ without Words: Co-Creating Knowledge in Special Schools with Art Research Together Karian Schuitema

Vignette Four Meet Liam

244 263

15 The Rights of the Child when Symbolic Language is out of Reach Kristin Vindhol Evensen

265

16 Do all Children have the Right to Express Views?: Listening to ‘Differently Voiced’ Communicators Lauran Doak

281

SECTION 3

The Life Course in Childhood

301

17 Babies with Disabilities and their Entitlement to Imagined Hopeful Futures Belinda Johnson

303

18 Is Disability a Justification to undermine the Right to Life? Begoña Rodríguez Díaz

320



339

Vignette Five Meet Ane

ix

Contents

19 Down Syndrome Abortion Bans: Law and Ethics Ryan H. Nelson and Jamie M. Crist

341

20 Clash of Competing Rights in Surrogacy: Embryos, Foetuses, and Children with a Disability JosAnn Cutajar

357

21 Framing Does Matter: How Health Professionals can Empower Disabled Children and their Families Claire Reinhardt and Amy Robasse

374

22 From ‘Retarded’ Education to Authentic Life: A Personal Education Retrospective Tammy Bachrach and Timothy Woods

391



409

Vignette Six Meet Michaela

23 Design as an Agent of Children’s Rights?: Inclusive Mobility Design for Children with Disabilities Cara Shaw and Farnaz Nickpour 24 Assistive Technologies as Rights Enablers Pedro Encarnação and Albert M. Cook 25 ‘Look at us . . . We’re Walking’: Parental Advocacy vs a Child’s Privacy in the age of Internet Sharing Stephanie Patterson and Kathleen McGoldrick 26 An Open Exploration around End-of-Life Journeys for Children Facing Terminal Illness/Severe Disability Caroline Ellison, Clara Chapman Van Duivenbode, Fiona Buchanan, and Nicole Moulding

411

432

450

465

SECTION 4

Life Domains in Childhood

481

27 The Changing Landscape of Inclusive Education: A Shift towards Universal Design for Learning Frederic Fovet

483

x

Contents



Vignette Seven Meet Ġinġa

501

28 ‘Lawfare’ and the Role of Civil Society on Promoting the Inclusive Education Public Policy in Brazil Rodrigo Hübner Mendes and Luiza Andrade Corrêa 29 A Certain Kind of Freedom, a Certain Subject of Right: The Disability dispositif of Inclusion and the Government of the Disabled Child in the Italian Education System Francesca Peruzzo 30 Social Justice and Language Rights for Deaf Children Tom Humphries, Gaurav Mathur, Donna Jo Napoli, and Christian Rathmann 31 Through the Eyes of Children with Disabilities: Recognising Children’s Agency in their Play in Inclusive Playspaces Jenene Burke and Lisa Stafford 32 Disabled Children’s Access to Music: Music’s Transformational Potential and Music Therapy’s Dis/ enabling Role in Making Music Accessible Maren Metell

Vignette Eight Meet Euletta

503

520 537

555

577 597

33 The Right to Grow Together: Exploring the Roles of Community Agents in Providing Support for Early Adolescents with Disabilities to make Friends and join Groups Gemma Diaz-Garolera, Maria Pallisera Díaz, and Judit Fullana Noell 34 Sex, Love, and Human Rights: Sexual Rights for Children and Youth Experiencing Disability Michelle Janzen 35 Who is Worthy of Rights?: An Analysis of Children Living at the Intersections of Disability, Citizenship, and Migration in the United States and Italy Valentina Migliarini and Chelsea Stinson xi

599

616

632

Contents

36 The Right to Safety: Promoting the Authority of Disabled Children to Tackle Rights Resistance Sally Robinson and Jan Idle 37 Ceci n’est pas un dénouement: This is not a Conclusion Angharad E. Beckett and Anne-Marie Callus

648 666

Index680

xii

FIGURES

5.1 Matrix of attitudes to participation by disabled children and young people. 10.1 ‘Angus Young swinging his jacket.’ Charcoal and oil pastels. 10.2 ‘My cousin Frida.’ Chalk and tempera. 10.3 Salt dough, monologue, and movement. 10.4 ‘Now I paint Mario.’ Toy and acrylic paint. 10.5 ‘They’re looking.’ Composition and photograph by Luke. 10.6 ‘Finishing touches.’ Paper, acrylic paint, and movement. 11.1 Themes emerging from role-plays. 11.2 Themes emerging from observation sessions. 12.1 Image of ladder with eight rungs. 12.2 Graphic with four text boxes placed horizontally from left to right, with an arrow placed between them pointing to the right. 14.1 Bernardo’s puppet. 14.2 Still of ‘our story’ showing Lilly animating. 14.3 Lilly has drawn a pig on her feedback form, which was her favourite part of the film. 14.4 Nathan’s personal page for the sensory story was created with help from the teaching staff and his classmate. 14.5 Bernardo’s drawing made after seeing the film. 14.6 Bernardo has painted a picture of a tree in the park for his personal page of the sensory story. It is one of the places he really likes. 23.1 A conceptual model of design thinking. 23.2 The four orders of design and relevant design disciplines. 23.3 The relationship between design and disabled children’s rights. 23.4 Reflection-for-transition framework of designerly ways. 23.5 Imbalance of designerly contributions to the field of IPM design. xiii

77 176 177 179 180 180 181 195 195 211 212 245 251 251 252 255 258 413 414 415 416 423

Figures

23.6 Example of a ‘dream wheelchair’ designed by a young wheelchair user. 23.7 Transitioning designerly ways to optimise design as an agent of children’s rights. 23.8 IPM designers’ collective focus on each of the five designerly ways in the context of IPM design as an agent of children’s rights. 24.1 Examples of adaptations to children’s wheelchairs. 28.1 Student enrolment of students with disabilities, global developmental disorders, and high skills/giftedness. 31.1 Selected inclusive playscapes. 31.2 Research equipment. 31.3 Zach’s shadow showing him redirecting various parts of play. 31.4 Jorjah’s shadow showing her directing others as part of her play. 31.5 Rhiannon twiddling the band. 31.6 Mason taking time out, enjoying his own space away from his carer. 31.7 Rhianna observing other children playing. 31.8 Phoebe taking turns on the flying fox. 31.9 Haiden taking turns on the see-saw. 31.10 Going down the slide. 32.1 Ava being the maestro in the song ‘Vi er alle elleville’. 32.2 The pig in ‘The wheels on the bus’. 32.3 The accessibility of the parachute. 36.1 Young people’s interpersonal safety model. 36.2 My safe places. 36.3 Young people’s safety strategies. 37.1 ‘Academic Activism’ by Aaron Adatto Sandel.

xiv

424 426 427 437 510 561 564 566 567 568 568 569 570 570 571 581 588 589 654 656 659 676

ILLUSTRATIONS

1 Aurora 2 Charlie 3 Liv 4 Liam 5 Ane 6 Michaela 7 Ġinġa 8 Euletta

36 110 206 262 338 408 500 596

xv

TABLES

  6.1   9.1 15.1 24.1 24.2 28.1

Frequency of response by child respondents The number of children in receipt of the CDG according to age group Results of Review of Relevant Studies ISO 9999:2016 classification of assistive products Children’ rights and assistive technologies that may be needed to be able to enjoy those rights Student enrolment of students with disabilities, global developmental disorders, and high skills/giftedness 2008–2020

xvi

98 155 268 434 440 511

CONTRIBUTORS

Tammy Bachrach is Associate Professor of Special Education at Azusa Pacific University (APU) in Southern California, USA. Prior to assuming her position at APU, Tammy was a general and special educator for 18 years, working with both primary and secondary students with disabilities. Tammy grew up in the disability community as the daughter and sister of individuals with intellectual disabilities. Francesca Bernardi is Founding Chair of the Antonio Gramsci Society UK and Fellow of the Royal Society of Arts (RSA). Francesca is Visiting Lecturer in Childhood Studies at Leeds Beckett University and Arts Therapies at the University of Roehampton. She trained in art and design education and has worked in schools, alternative provision, and further education. She most consistently engages in multidisciplinary research, setting up creative environments for critical participatory work with marginal communities. Francesca is a translator (QUB; Routledge), advocate, artist, and creative coach. Francesca is a member of the Disability without Abuse Project USA. Fiona Buchanan is Senior Lecturer and Researcher at the University of South Australia, with extensive experience as Social Worker in community health and nongovernment agencies in the UK and in Australia. Working from an empowerment perspective, Fiona has experience that includes counselling, group work, community development, and agency management. Research expertise includes child wellbeing, mothering, the effects of domestic violence on women and children, young people, and the effects of sexual abuse. Currently, she is a senior research fellow/ senior lecturer, leading funded research into ‘what helps people who grow up with domestic violence create healthy relationships as young adults’ and participating as a chief investigator in research into ‘emotional abuse of children’. These research activities all contribute to understanding the rights of children at the end of life as well as across the lifespan. xvii

Contributors

Jenene Burke, PhD, is Professor and Director, Academic Operations in the Institute of Education, Arts, and Community at Federation University Australia. A former teacher, Jenene has over 20 years’ experience in teacher education. Jenene’s learning and teaching interests centre on educational responses to student diversity, with respect to inclusive education and disability studies in education. Jenene is best known for her world-class research into playspaces as inclusive environments for children and their families, which she embarked on in 2003 in her doctoral study. She was an invited member of the (Australian) National Inclusive Playground Advisory Group in 2012. Bronagh Byrne is Senior Lecturer in Social Policy, Co-Director of the Centre for Children’s Rights, and Co-Founder of the Disability Research Network at Queen’s University Belfast (QUB), Northern Ireland. She is also Programme Director of the Master’s in Children’s Rights at QUB. Her research expertise focuses on the implementation of disability rights law and children’s rights law across national policy and practice, on the right to inclusive education, and on the use of rights-based research methodologies. Bronagh is an editorial board member of the International Journal of Disability and Social Justice. Robert Campain is Research Fellow in the Centre for Social Impact, Swinburne University. The focus of his research has been on social inclusion for people with disability, involving participatory research methods. He is currently working on projects for the community service provider Uniting Vic Tas, with an emphasis on outcomes for recipients of community services. Ignacio Campoy Cervera is Advisory Member of the Royal Board on Disability, Senior Lecturer with tenure at the University Carlos III of Madrid, and Member of the Institute of Human Rights ‘Gregorio Peces-Barba’ of the University Carlos III of Madrid. His research interests focus on children’s rights, the rights of persons with disabilities, inclusive education, equality and non-discrimination, the concept and grounds of human rights, and the philosophy of law. Matthew Clarke is Pro-Vice Chancellor Research Development and Alfred Deakin Professor at Deakin University and has worked in the development sector for more than two decades, originally working for a large international non-governmental organisation before moving into the tertiary sector. His research has focused on the professional practice of NGOs as well as aid effectiveness, religion and development, and humanitarian action. Much of Matthew’s work focuses on the Pacific. Albert M. Cook is Professor Emeritus of Speech Pathology and Audiology in the Faculty of Rehabilitation Medicine at the University of Alberta. He served as Dean of the Faculty of Rehabilitation Medicine from 1994 to 2007. Dr Cook has worked with interdisciplinary teams to develop assistive devices and to assess the effectiveness of technology being used by persons with disabilities. Dr Cook co-authored with xviii

Contributors

Janice Polgar and Pedro Encarnação Assistive Technologies: Principles and Practice 5th ed., 2020. He has co-edited four other textbooks and written numerous chapters in rehabilitation and biomedical engineering texts, monographs, peer-reviewed papers, and conference proceedings. Luiza Andrade Corrêa has a PhD (2020) and Master (2015) in State Law from the University of São Paulo and graduated (2009) in Law from the Pontifical Catholic University of São Paulo, and is currently studying specialisation in Instructional Design (Senac). She is the advocacy coordinator at the Rodrigo Mendes Institute since June 2020. Her research areas are judiciary, teaching and research in law, antidiscrimination law, education, and disability studies. Jamie M. Crist is Clinical Ethicist at Advocate Aurora Health System based in Chicago, Illinois, USA. Much of her work involves conducting ethics consultations at the bedside, developing best practices for consultations, hospital policy development, and ethics committee support. Her research focuses on the intersection of bioethics and health law. She earned a JD (summa cum laude) and an Master of Arts in Bioethics from Case Western Reserve University in 2018 and completed a post-doctoral fellowship at Baylor College of Medicine in 2020. She is also a certified healthcare ethics consultant. JosAnn Cutajar is Associate Professor in the Gender and Sexualities Department at the University of Malta. She has worked as a consultant with various Maltese government entities, adopting an intersectional approach. From 2017 to 2020, she acted as the coordinator for the Consultative Council for Women’s Rights within the Ministry for Justice, Equality, and Governance. She conducted research on gender and disability for the EU Fundamental Rights Agency between 2005 and 2013. Kevin De Sabbata is Lecturer at Keele University Law School (UK). His work focuses on human rights, legal capacity, healthcare decision-making for people with dementia and disabled people, and global health ethics. He has held academic positions at the Vrije Universiteit Amsterdam (NL), the University of Udine (Italy), and Bristol University (UK). He holds a Master in Law from the University of Trieste (Italy) and a PhD in Law from the University of Leeds (UK). Before transferring to academia, he has worked in legal practice, focusing on the legal protection of vulnerable individuals, civil liability, and inheritance law. Gemma Diaz-Garolera received her PhD in Education in 2019 from the University of Girona (Spain). Her research is focused on the social inclusion of people with intellectual disabilities, their community participation, skills and supports related to friendship, and personal support networks, among others. She teaches at the Bachelor’s Degree in Social Education and at the Master’s Degree in Inclusive Education Addressing Diversity, especially focusing her teaching on aspects related to social inclusion, inclusive education, universal support measures, and participation. More xix

Contributors

details about her research work can be found on https://recercadiversitat.wixsite. com/diversitat/publicaciones. Begoña Rodríguez Díaz PhD is Lecturer at Universidad Francisco de Vitoria (Madrid). She has 20 years of teaching experience in International Law and European Union Law both at the undergraduate and postgraduate levels. One of her major lines of research is the role of civil society in the adoption and monitoring of international treaties. Having a child with Down syndrome has led her to focus her research on the rights of people with disabilities, a field where she aims to specialise and contribute. Lauran Doak is Senior Lecturer in Special and Inclusive Education at Nottingham Trent University. Her research interests include autism, learning disability, communication, agency, literacy, and augmentative and alternative communication (AAC). She is also committed to revaluing and celebrating the role played by families in the education of children with learning disabilities. Recent publications have examined family use of story-making apps with children with learning disabilities, parental perspectives on the meaning of ‘literacy’ in special education, and family (dis)engagement with AAC. Lauran tweets as @LauranDoak. Patty Douglas is Assistant Professor in the Department of Educational Psychology and Student Services at Brandon University in Brandon, Canada. She is a former special education teacher in Toronto, Canada. She researches and teaches in disability studies, critical autism studies, and critical approaches to mothering and care through arts-informed, critical, interpretive, post-structuralist, and post-humanist approaches. Douglas works with teachers, families, and disabled individuals to challenge stereotypes and reimagine systems beyond exclusion and deficit perceptions. More information can be found at www.restoryingautism.com @Restorying. Pedro Encarnação is Senior Affiliate Professor of the CATÓLICA-LISBON— Universidade Católica Portuguesa, Portugal. He is President-Elect of AAATE (Association for the Advancement of Assistive Technology in Europe, 2022–2023); Visiting Professor at the Universidad del Rosario, Colombia; and Senior Visiting Researcher at the University of Leeds, UK (2022–2025). With a background in electrical engineering, he has current research interests that include robotic assistive technologies to support children with disabilities. Pedro has joined Albert M. Cook and Jan Polgar for the 5th edition of Assistive Technologies: Principles and Practice, co-edited Guidelines for supporting children with disabilities’ play and Robotic Assistive Technologies: Principles and Practice, and published 60+ articles in peer-reviewed journals and conference proceedings. Caroline Ellison has extensive multidisciplinary professional practice across disability and human services in Australia and SE Asia, as Crossing the Horizon Professor of Ageing and Disability, Developmental Educator, and End-of-Life Doula at the xx

Contributors

University of South Australia. Caroline has a focus on engaging with people living with disability, including children as collaborators to create increased inclusion, choice, and control at all stages of life. With a strong interest in systemic, societal, and individual issues across sectors such as disability-inclusive development, end-oflife choice and planning, arts, sports, and leisure (how we use our free time), access to spiritual activities, positive behaviour support, protective behaviours and sexual health, family leadership, and social role valorisation. Kristin Vindhol Evensen is a kindergarten teacher and a special needs educator. She has specialised in adapted physical activity and holds a PhD that describes the embodied learning of lower– and upper–secondary school students with severe multiple disabilities. Evensen works as an associate professor at the Norwegian school of sport sciences, where she concentrates on how embodiment affects impairment and disability, gender, sexual orientation, and social class. Frederic Fovet is an Inclusion and UDL scholar at Thompson Rivers University. His practice and research have focused originally on the creation of inclusive provisions for learners with social, emotional, and behavioural difficulties. He has previously held, in turn, the positions of Head of Accessibility Services at McGill University, Assistant Professor in the Faculty of Education at the University of Prince Edward Island, and Associate Professor in the School of Education and Technology at Royal Roads University. He acts as a consultant, domestically and internationally, both in the K–12 and post-secondary sectors, in relation to the integration of UDL and to the management of change in inclusive pedagogy. Anita Franklin, Professor of Childhood Studies, University of Portsmouth has over 25 years of experience undertaking policy- and practice-focused research with, and alongside, disabled children and young people. Her work predominantly examines issues of agency, rights, protection, inequality, and inclusion. Anita’s research on disabled child abuse and disabled young adults who have experienced sexual and domestic violence has sought to ensure that survivors’ voices are central. Alongside Zara Todd, Anita has developed methodologies to empower disabled young people to become research leaders undertaking all aspects of the research cycle and utilising research evidence to lobby for change. Judit Fullana Noell is Associate Professor at the Department of Pedagogy in the University of Girona. She teaches at the Bachelor’s Degree in Social Education and in the Master’s Degree in Inclusive Education Addressing Diversity. She has developed research on the social inclusion of people with intellectual disabilities, issues related to supported employment, the transition to adult life, independent living, and social relationships and personal support networks. She has also contributed to the development of inclusive research investigations. From all this work, publications have emerged that can be consulted at https://recercadiversitat.wixsite.com/diversitat/ publicaciones, as well as more details of her work. xxi

Contributors

Edgar Galea-Curmi is Assistant Lecturer in Social Policy and Social Work at the University of Malta. His main lecturing and research interests include poverty and living standards, supported living, long-term care, housing affordability, working with service users and communities in the co-production of policies and services, and programme evaluation. He was engaged extensively in the Maltese Public Service on major social reforms and the development of social services. A social worker by profession, Edgar has worked in the disability, mental health, domestic violence, and correctional services sectors and contributed to the development of social work as a recognised statutory profession in Malta. Nick Hodge is Emeritus Professor of Inclusive Practice in the Sheffield Institute of Education, Sheffield Hallam University, UK. Prior to joining Sheffield Hallam, Nick was a special education teacher, supporting disabled children and their families in schools for over 15 years. Nick’s research interests focus on the attitudinal and structural barriers that lead to disabled children and their parents and carers becoming marginalised, disempowered, and excluded within the educational system. Much of Nick’s research has involved challenging deficit-led models of disability that mark out children and young people as disordered and other. Tom Humphries is Professor Emeritus in the Department of Education Studies and the Department of Communication at the University of California, San Diego. He is the co-author with Carol Padden of Deaf in America: Voices from a Culture (1988) and Inside Deaf Culture (2005) and of numerous papers, including ‘Schooling in ASL’ in the Berkeley Review of Education. More recently, he has published collaborative works on the harms of language deprivation and the right to language. He was awarded the 2011 Henry Trueba Award for research on the social context of education by the American Educational Research Association. Jan Idle is a postdoctoral research fellow working at Flinders University and the University of Technology Sydney. She focuses her social policy research on listening to and activating the voices of often-overlooked groups, including children and young people. Michelle Janzen is a PhD candidate within the Child and Youth Studies Department at Brock University in Ontario, Canada. Her focus is on disability and human rights, parent advocacy, and policy and practice. Her current research examines the ways in which disabled individuals were represented and impacted through Covid-19 political and social policy. Her interest was examining how failure to consider the needs and human rights of disabled populations within crisis management policies impacted the mental health of disabled children and their families during the first two years of the pandemic. Elena Jenkin is Disability and Inclusion Researcher and Consultant who has worked alongside children and adults with disabilities, deaf communities, their

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families, and communities in the Pacific, Asia, and the Middle East. Elena has a focus on inclusive methods, human rights, research, policy, and teaching, with her recent work conducted in Iraq, Bangladesh, and Australia. Elena consults for government, non-government organisations, and multi-lateral organisations. She previously lectured in the Disability and Inclusion programme at Deakin University. Belinda Johnson is an applied sociology academic and a social researcher in the Centre for Social and Global Studies at RMIT University, Melbourne, Australia. Belinda is an early-career researcher, and she identifies as a lived expertise, parent-advocate researcher as mother of a 9-year-old girl who has Down syndrome. Her research interests include disability and carers and intersections of social justice issues and creative practices. She has published in Disability & Society and the Journal of Sociology. Radoš Keravica is a disabled researcher and a doctoral candidate at the University of Leeds, Centre for Disability Studies. He works as an EU Marie Sklodowska-Curie early-stage researcher within the Disability Advocacy Research in Europe (DARE) project. He holds a Master’s Degree in Human Rights Law from the Central European University and a Master’s Degree in International Economics from the University of Novi Sad. His research concerns disabled children’s participation in healthcare decision-making. He serves as a board member of the European Network on Independent Living (ENIL) and worked previously for the UN OHCHR in Serbia as Disability Rights Specialist. Gaurav Mathur is Associate Professor in the Department of Linguistics at Gallaudet University. His research areas centre on language structure, with a particular focus on phonology and morphology (agreement, numeral incorporation, and classifier constructions). His research areas also include language perception and the role of language modality (visual-manual vs. auditory-vocal) in language structure. His studies have drawn on cross-sign language comparisons with regard to morphology and on experimental approaches to sign language phonology. Currently, he is collaborating with his research team and other colleagues to advocate for the importance of early sign language exposure for deaf children. Kathleen McGoldrick is a clinical associate professor at Stony Brook University, where she teaches in the Disability Studies and Human Development concentration, in addition to courses in scholarly writing and research methods. She has been PI on a study that looked to identify healthcare professionals’ perspective of disability, titled ‘Shifting Perspectives: Enhancing Healthcare Professional’s Awareness Through a Disability Studies Undergraduate Curriculum’. She is also the co-author on an article on the intersections of disability studies and health science. In addition, she has co-authored a book, Research Methods in the Health Sciences. Kathleen holds an MLS from St. John’s University in NY.

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Contributors

Rodrigo Hübner Mendes is Founder and CEO of the Rodrigo Mendes Institute, a non-profit organisation whose mission is to guarantee that every child with disability has access to quality education. The institute develops research and teacher training programs in several countries, aiming to transform the public education systems into environments that respect and value human diversity. Rodrigo Hübner Mendes is Young Global Leader (World Economic Forum) and Fellow of Ashoka. Over the last years, he has been working as a consultant for UNESCO and for the government of Angola. Maren Metell (she/her) is a PhD student at Nordoff Robbins/Goldsmiths, University of London; works as a music therapist in a public school; and teaches in the music therapy program at the Grieg Academy, University of Bergen, Norway. In her PhD, she explores, together with families with disabled children, how, when, and for whom musicking becomes accessible. Valentina Migliarini is Assistant Professor in Education Studies at the University of Birmingham. Her work, both in research and teaching, focuses on increasing access to equitable education for students from multiply marginalised communities, specifically disabled students from migrant and forced migrant backgrounds, in secondary education. She is at the forefront of researchers using the Disability Critical Race Theory in Education (DisCrit) framework as an intersectional lens to examine inclusive policies and practices in education systems in Europe and in the United States. Nicole Moulding is Professor, Researcher, and Educator at the University of South Australia, with special interests in gendered violence, mental health, and social work, with over 40 journal articles in research into gendered violence, mental health, and social work. Nicole is Director of the Safe Relationships and Communities Research Group (SRC), an interdisciplinary research group from diverse disciplines across UniSA and industry partners. Her research projects include an Australian Research Council–funded nationwide study into the long-term impact of childhood emotional abuse, and a national study into domestic violence on women’s citizenship, with a focus on mental health, housing, employment, and social participation. As an academic and social worker, Nicole has an interest in children and the rights of children across the lifespan, including at end of life. Kevin Murfitt is Senior Lecturer in Disability and Inclusion in the School of Health and Social Development at Deakin University and a researcher whose work has encompassed workforce diversity and human rights. He is a passionate advocate for access to all areas of community life for people with disability. Donna Jo Napoli is Professor of Linguistics and Social Justice and Maurice Eldridge Faculty Fellow at Swarthmore College. Her present research areas are the structure of sign languages, the effects of modality on linguistic structure, creativity in language (poetry, humour, and taboo), and cognitive principles in common among xxiv

Contributors

human activities (language, dance, yoga, comic strips). She is part of the RISE project, producing bimodal-bilingual video-books for deaf children, distributed free on the internet. It is her greatest privilege and joy to participate in this team, advocating for deaf children’s language/human rights. Ryan H. Nelson is Assistant Professor in the Center for Medical Ethics and Health Policy at Baylor College of Medicine and Clinical Ethicist at Houston Methodist Hospital in Houston, Texas, USA. He earned his PhD in philosophy at the University of Utah in 2019 and completed a post-doctoral fellowship at Baylor College of Medicine in 2021. His research addresses ethical issues related to disability, psychiatry, and end-of-life care. Farnaz Nickpour is Reader in Inclusive Design and Human-Centred Innovation at the University of Liverpool and leads the Inclusionaries Lab for Human-Centred Innovation. Her work explores critical and contemporary dimensions of design for inclusion across healthcare and mobility sectors. Maria Pallisera Díaz received her PhD in Education in 1994 from the University of Girona, where she is a full professor at the Department of Pedagogy, former coordinator of the Bachelor’s Degree in Social Education, and the present coordinator of the PhD Programme in Education. Her current research interests are focused on social inclusion of people with intellectual disabilities (independent living, community participation, and supporting social networks and relationships), as well as inclusive research. In the past, she has worked on studies linked to work inclusion (supported employment) and transition to adult life. See http://recercadiversitat.wix. com/diversitat for more details about her group’s work. Stephanie Patterson is Clinical Associate Professor at Stony Brook University. She teaches in the Disability Studies and Human Development concentration. She has authored a textbook, Disability and Employment in the United States, and co-edited two special forums for the Review of Disability Studies. She has written a book chapter, ‘Working 9 to 5 . . . or Not: Historical Origins of Disability Discrimination in the US Workplace’, for Disability Discrimination at the Workplace, and co-authored ‘Disability, Vulnerability, and the Capacity to Consent’, in Research Involving Participants with Cognitive Disability and Difference: Ethics, Autonomy, Inclusion, and Innovation. Her MLS is from Stony Brook University. Francesca Peruzzo is Post-Doctoral Research Fellow at the University of Birmingham at the School of Education, researching inclusive technologies and digital accessibilities during the Covid-19 pandemic. She completed her doctoral studies at the UCL Institute of Education with a study that merged a sociological perspective and Foucauldian tools to challenge ableism in Italian higher education and their implications for inclusive policies and practices and equity in opportunities in academic contexts. Her current interests lie in disabled students’ activism in higher education; xxv

Contributors

accessible, decolonial, and inclusive education policy and practice; and policy privatisation in education. Elvira Psaila, a physiotherapist by profession, has worked in both inpatient and outpatient settings. For over ten years, Elvira worked with disabled children and their families as a physiotherapist at the Child Development and Assessment Unit (CDAU). In 2020, she moved to Aġenzija Sapport, the national provider for services for disabled persons, as a physiotherapist. Since then, she has taken on the role of Day Services Manager within the same agency. In 2015, Elvira completed her Master of Arts in Disability Studies and is currently reading for her doctoral degree, with her research focusing on voice and active agency in young disabled children’s lives. Christian Rathmann is Professor and Chair in Deaf Studies and Sign Language Interpreting at Humboldt-Universität zu Berlin. He administers two programs: BA in Deaf Studies, and MA in Sign Language Interpreting. Research areas include linguistics (agreement, aspect, event structure and classifier constructions, corpus of sign languages L1 and L2 acquisition and learning), sign language teaching (methodology and assessment), and interpreting and translation. He is currently involved in several projects: DESIGNS (focus on Deaf employment); PROSIGN (focus on sign language learning, teaching, and assessment within the context of Common European Framework of Reference for Languages), and EUTB (focus on disability-related peer counselling). Claire Reinhardt is a disability, special education, and medical advocate in San Diego, California. She has presented on including children in the IEP process, disability stereotypes and microaggressions, and making sure help is wanted before doing a task for someone. Her current project is personal research regarding promoting disability pride for disabled youth. Amy Robasse is Executive Director of the Iowa Statewide Independent Living Council. She has her Master’s in Disability Studies and has been working and volunteering in disability-related positions since 2007. One of the most fun positions she held was working with the United States Forest Service to increase their accessibility. Sally Robinson is Professor of Disability and Community Inclusion at Flinders University, South Australia. She does co-produced research with disabled children, young people, and adults about what helps them feel safe, well, and happy at difficult times in their lives. She also works with governments and organisations about how to listen to the things that matter to disabled people. Jonas Ruškus is Doctor in Education and Full Professor at the Department of Social Work at Vytautas Magnus University in Lithuania. In 2014, he was elected by the General Assembly of the United Nations as an expert-member of the Committee on the Rights of Persons with Disabilities of the United Nations and was re-elected in xxvi

Contributors

2018, when the Committee appointed him as its vice-chair. Jonas Ruškus is a member of councils and executive boards of civil society organisations, such as Lithuanian Human Rights Centre, Kaunas l’Arche Community, Association of Independent Living, Lithuania, and Teach for All network partner in Lithuania. Karian Schuitema is an interdisciplinary researcher and practitioner who specialises in theatre for young audiences, cultural and educational inclusion, as well as collaborative research with children and young people. She founded ‘Art Research Together (ART!)’, which is a collaborative research initiative that invites children to co-create knowledge using performance and community arts. Cara Shaw is a PhD researcher with expertise in inclusive mobility design. Cara has developed mobility products for a variety of user groups and contexts, from low-cost all-terrain wheelchairs and evolvable walking aids to high-tech rehabilitation devices and paediatric power chairs. Lisa Stafford is an ARC DECRA senior research fellow in the School of Geography, Planning and Spatial Sciences, UTAS, Australia. Lisa is a community planner and social scientist specialising in inclusive communities, disability justice, and disabled children’s geographies. She has 20 years’ experience across professional practice and academia. Her work seeks to bring about equity and justice in everyday spaces and infrastructure, including having led the Queensland All Abilities playground project in 2007–2010, creating 17 inclusive playspaces with local governments. Lisa is also a highly experienced participatory researcher and facilitator in inclusive creative methods. Chelsea Stinson is Assistant Professor of Inclusive Education at the State University New York College at Cortland. Her research, teaching, and community-based work focus on the experiences of emergent bilingual youth labelled as disabled and their families at the crossroads of race, language, disability, and migratory status. She also studies the knowledge, emotions, and policy contexts of teachers who support multiply marginalised students. She aims to contribute to a critical, generative understanding of equity and justice through inclusive education. Elena Syurina is Assistant Professor at the Athena Institute, Vrije Universiteit, Amsterdam. She has a multidisciplinary background in policy analysis and neuropsychology. She holds a Master’s in Neuropsychology and a PhD in Child and Youth Health Care from Maastricht University, the Netherlands. Her current work focuses on participatory research involving children as well as research into improvement of quality of life of disabled people (especially individuals with autism spectrum disorders). Zara Todd identifies as intersectional feminist and disabled person and has been active in disability rights advocacy for over 20 years. Zara is passionate about inclusion xxvii

Contributors

and supporting marginalised groups to have a say in policymaking processes. She has advised on disability at local, national, and international levels, including for the UK government, the British Council, and the Council of Europe. Zara is particularly interested in participatory research and led young disabled peoples’ participation in the VIPER research project carried out by ALLFIE. Zara has completed a Winston Churchill fellowship, where she explored disability leadership in Australia and New Zealand. Zara Trafford is a qualitative researcher from South Africa. She has an enduring and evolving interest in health inequalities and inequities, especially in under-resourced areas and among underserved populations. Zara has a background in social science (oral history and medical anthropology) and worked in the non-profit sector and public health research before moving into disability. Her doctoral research, at Stellenbosch University, adopts a variety of theoretical approaches and is focused on understanding multiple stakeholders’ perspectives on the South African care dependency grant for disabled children. She hopes to contribute to the growth of interdisciplinary and applied research in public health and disability, from the south. Clara Chapman Van Duivenbode is Research Assistant at the University of South Australia with an interest in the lives of children living with chronic conditions and illness. Clara has studied law and other policy development as well as understanding human rights issues. Erin Wilson is Professor at the Centre for Social Impact, School of Business, Law and Entrepreneurship, Swinburne University of Technology, and holds the uniting chair in Community Services Innovation, Centre for Social Impact, Swinburne University. Erin has a special interest in the area of disability-inclusive practice and human rights in both Australia and developing countries. Much of Erin’s work involves research methods that enable the participation of people with disability as researchers, respondents, and in advocating change based on research findings. Timothy Woods is a self-advocate and an active member of his community. He is a custodian for St Michael’s Orthodox Church, California, USA.

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ACKNOWLEDGEMENTS

We would like to thank the young disabled people and chapter authors for their contributions. It has been our joy to work with you all on this book project. We were particularly delighted and encouraged by the way in which contributors inspired and supported each other during the preparation of this handbook. We hope that one of the legacies of this text will be the formation of an interdisciplinary international community of practice in this area. There is need for such a community, given the extent of the work still to be done to ensure human rights and social justice for disabled children globally. Thank you to Ash Loydon, Illustrator, for his cover artwork and portraits of the young disabled people. It was important to us to commission an illustrator who is part of the Disability Arts community. Ash identifies as an autistic father, artist, and illustrator. He is also the parent of autistic children. We thank him for the understanding, sensitivity, and imagination with which he responded to this commission. Thank you to Gerard Quinn for writing the Preface to this handbook. We are so pleased that he feels this collection makes a valuable contribution. Thank you to Claire Jarvis at Routledge for her recognition of the need for a handbook of this type, on this topic, and for her guidance throughout. We are also grateful to Sully Evans for his assistance and positivity in the final stages of preparing the manuscript. Warm thanks to Burgandi Rakoska for her work on the index. Finally, we want to recognise our families, friends, and each other. Much of the work on this handbook took place during the Covid-19 pandemic. It was family and friends that sustained us during this period. We thank them with all our hearts. Angharad and Anne-Marie September 2022

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PREFACE

It is an honour, indeed, to be asked to write a preface to this inspiring volume. One of the interesting things about the UN Convention on the Rights of Persons with Disabilities (UN CRPD) is the ripple effect it is having on many diverse and longstanding fields. One of those fields concerns the rights of the child. Looking back, it is interesting to see how conceptions of childhood have evolved. It is also interesting to see how the domain of children’s rights has itself been changed and enriched by the impact of the UN CRPD. Two such impacts stand out and are admirably captured in this volume. First of all, children are no longer seen as being merely the static beneficiaries of protection, as they were in the past. To the protective impulse, new theories of moral agency have been superadded, with a renewed focus on the latent dreams, goals, and wishes of children themselves. The well-known innovations of the Convention with respect to human autonomy and legal capacity help give fresh life to the idea of the moral agency of all children, and these innovations also help nudge thinking on the rights of the child forward. Secondly, it seems strange to say this now, but it is true: in the past, children with disabilities were not fully conceptualised as children, with equal dreams, hopes, and desires of their own. Despite our collective commitment to help nurture and develop children, this commitment was not applied evenly to all. The relative lack of inclusion even in areas like play was telling. Indeed, the failure to ensure the right to play for children with disabilities is especially revealing. It is through play that we imagine the future, our place in the future, and develop our relationships with others that help us navigate the future. By affording space for play, we give the next generation the means to continually imagine and re-imagine their place in the world. By closing down that space, we fail to see the person behind the human difference of disability. Inclusion is, of course, complicated—involving a mix of protection, nurturing, and empowering. The real added value of the UN CRPD in this regard is that it xxx

Preface

underpins our collective commitment to inclusion in the round and not just in terms of protection. Protective policies in the past helped build gilded cages for children with disabilities. The beauty of a volume like this is that it helps enrich the debate about inclusion and how to achieve it, with the voices of children and young persons themselves being central. I commend all involved, and I know that policymakers all over the world will benefit from this work. Gerard Quinn UN Special Rapporteur on the Rights of Persons with Disabilities

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1 INTRODUCTION Children’s Rights and Disability Anne-Marie Callus and Angharad E. Beckett

We begin this handbook by introducing its focus: disabled children’s rights. This requires an analysis of the three key terms—children, disability, and rights—how they have to come to mean what they mean today, and what they mean when they are used together. This chapter traces the evolution of the concepts, providing the historical context for the remainder of the book. The intersection between the three concepts is discussed, drawing upon interdisciplinary approaches. This chapter concludes with a summary of the four sections of the handbook and their respective content, and some signposting to our final chapter.

Children Ulanowicz (n.d.) refers to Payne’s The Childhood in Human Progress, published in 1916, as being the first history of childhood to be published. But if a point of origin had to be nominated for the vast amount of research about children that exists today, Philippe Ariés’s Centuries of Childhood: A social history of family—published in 1962 (first published in French as L’Enfant et La Vie Familliale Sous l’Ancien Regime in 1960)—would be a likely candidate. This text is widely credited as foundational to childhood studies. Ariés’s book has not been without its critics, not least his contentious statement that ‘it seems more probable that there was no place for childhood in the medieval world’ (Ariès 1962, p. 33). As Lesnik-Oberstein (1998, p. 9) wryly observes, ‘[r] arely can so few words have brought forth so many in refutation’. However, whatever limitations it may have, this book has been highly influential in ‘developing the application of theoretical questions to the idea of “childhood”, and initiated the analysis of “childhood” as a socially, culturally, and historically contingent construction’ (Lesnik-Oberstein 1998, p. 8). Analysing childhood as a construction obviously does not mean denying or even overlooking the material reality of being a child but ‘treat[ing] children benignly within a world of the practically real (that which passes DOI: 10.4324/9781003056737-1 

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Anne-Marie Callus and Angharad E. Beckett

for “real” in practice), while at the same time always being alert to the constructed character of that reality’ (Stainton Rogers and Stainton Rogers 1998, pp. 183–184, italics in the original). It is significant that Ariés’s original French book title and the subtitle in the English version refer not only to children but also to families. The history of the development of the concept of childhood is thus a history of studies about the relationships of children with their parents and then with other adults. It is also a history of how adults have looked at children, whether it is Ariés’s cultural history of childhood, Darwin’s (1877) autobiographical portrait of his own son, Rousseau’s (1993) treatise on the education of Émile, Langdon Down’s work with children who are nowadays identified as having an intellectual or learning disability (Jarrett 2020), Montessori’s (1967) work on educational methods, or Arendt’s (1958a) concept of natality and the promise that every birth offers as a beginning and introduction of something new to the world. This list can be extended, of course—child developmental theorists (such as Piaget, Vygotsky, or Erikson); Peter Townsend and others’ influential, policyfocused work at the Child Poverty Action Group; Jens Qvortrup’s (1994) important articulation of children as human beings, not human becomings; James et al.’s (1998) development of the ‘new’ sociology of childhood; and more recently, the coming to the fore of Global South perspectives, including the community relational view of the raising of children informed by Ubuntu philosophy. Whichever way childhood is understood, it has been, and continues to be, primarily adults who discuss and conceptualise its nature. To make matters more complicated, the nature of childhood is somewhat paradoxical. Childhood is the initial stages of life, which we quite literally grow out of as we move into adulthood. It is therefore a time to prepare for adulthood. But it is also a phase of life that is valuable in and of itself. Thus, it is both a means to an end and an end in itself. Taylor (1998, p. 92) describes childhood as ‘[t]hat fleeting period of life which all experience and all grow out of, yet which always leaves its traces within and behind the adult’. However, while we never quite leave our childhood behind us and while childhood experiences are foundational to our development, most of us do become adults. After all, as William Wordsworth wrote in his 1802 poem ‘My Heart Leaps Up’, ‘The Child is the Father of the Man’. Children, therefore, are human beings in their own right, but also beings that are on the way to becoming adults. Many children do present to adults their perspectives on childhood, while they are still children. There are children who are activists in their own right, for example, Malala Yousafzai, Nujeen Mustafa, and Greta Thunberg, to name just three child activists of our time. Whether their focus is on education for girls, refugees, or climate change, their arguments are underpinned by the problems that children face because of the actions of today’s adults and their fears for the world they will have to inhabit as adults. Furthermore, their work has been directed towards adult legislators, policymakers, and service providers. As these child activists have grown up and become adult, so is a new generation succeeding them. As Lansdown (2010, p. 17) observes, whilst ‘the specific rights violations associated with childhood are time-limited’, the constant process of cohorts ageing out of childhood means that 2

Introduction

there is always a newly emerging cohort of younger children potentially facing new challenges and needing to be heard. One of the many challenges facing adults who want to understand children’s experiences and perspectives is that our childhood experiences will inevitably be different from those of children today. Societies and cultures are constantly changing, and in many places, technology is accelerating those changes. Therefore, insofar as childhood is socially and culturally constructed, current experiences of childhood are different from those of even the previous generation of children. Adults, then, need to maintain a critical and enquiring stance towards their own assumptions and practices in relation to children. Children’s views about their lives and about what they expect of adults matters and their perspectives need to inform our work, directly. And since no one child is alike, we need to be aware of diversity in their perspectives and what they need from us.

Rights Like the concept of the child and childhood, there is an extensive, rich history of thinking about ‘rights’—economic, social, cultural, civil, and political among others—their (relative) importance, function, and evolution. The idea of human rights, which is the focus of this handbook, can be traced back to Ancient Greece (although they only applied to free men, not women, children, or slaves). Much later, the English Magna Carta of 1215, the French Declaration of the Rights of Man and of the Citizen of 1789, and the United States Bill of Rights, also of 1789, are widely considered to be the most important statements on human rights. The concept of rights as belonging inherently to each and every human being by virtue of their being human found its fulfilment in the 1948 Universal Declaration of Human Rights, which, in the first line of its preamble, states that ‘the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world’. This Declaration, together with the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social, and Cultural Rights, is among the foundations of the two United Nations conventions that are of direct relevance to this handbook—the Convention on the Rights of the Child (1989) (CRC) and the Convention on the Rights of Persons with Disabilities (2006) (CRPD). The rights of children and of disabled persons, and by extension, also of disabled children, are also safeguarded by other supranational pieces of legislation, such as the European Convention on Human Rights, the African Charter on Human and Peoples’ Rights, and by national laws. The latter are important. However, there remains a fundamental problem with the realisation of human rights globally: some countries make international law part of their domestic legal order; many more do not and consider international and domestic law to be distinct. In such ‘dualist’ states, it is only when the rights set forth in international law are enshrined in national laws that they are justiciable and remedies can be sought. Arendt’s argument, that the upholding of human rights depends ultimately on being a citizen of a state that recognises one’s human rights, still holds true. 3

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Even when cases are taken to supranational courts, the decision can only be executed by the government of the country of citizenship of the person seeking redress. A clear case of this situation is that of Rusi Stanev, a Bulgarian man with a diagnosis of schizophrenia who was placed under guardianship in 2002 and found himself in an abusive situation in an institution. In 2011, the European Court of Human Rights ruled that ‘Mr. Stanev had been deprived of his liberty under Article 5 of the European Convention on Human Rights (ECHR)’ and that various other rights established in the ECHR had been breached (cited in Lewis, n.d., p. 2). However, Stanev could not win back his rights or receive his compensation, because he could only do so through the Bulgarian courts, the same courts that had taken away his legal capacity and therefore did not recognise him as a person before the law, a predicament which Lewis describes as Kafkaesque. Disabled children’s human rights, therefore, cannot be considered only in the abstract formulation of international legislation but must also be considered in the concrete reality of different social, cultural, and political contexts. Most chapters in this handbook do just this: presenting and discussing the situation of disabled children in specific national contexts. An important characteristic of the UDHR is that it recognises childhood, along with motherhood, as a time when individuals are ‘entitled to special care and assistance’ (Article 25), an entitlement which is recalled in the preamble to the CRC. The CRPD also makes reference to disabled children’s rights to, as far as possible, know and be cared for by their parents (Article 18) and grow up in the community within a family setting (Article 23) and their entitlement to all rights on an ‘equal basis with other children’ (Article 7). The responsibility of adults to safeguard children’s rights is also found in the League of Nations’ Geneva Declaration of the Rights of the Child (1924), which, as Woodhead (2010) writes, was based on principles established by Eglantyne Jebb (who also founded the Save the Children Fund). These placed responsibility on adults, among others, to care for the child, ensure that their basic needs are cared for, and that the needs of children in difficult situations are met. At the same time that children are entitled to the care and assistance that is necessary in childhood, they also have the right to enjoy their freedom. This right is an integral part of the notion of human rights. The UDHR’s first statement is that ‘the equal and inalienable rights’ of humans are ‘the foundation of freedom, justice and peace’. The respect of rights, freedom, justice, and peace are thus inextricably bound together. Freedom and its near synonym, liberty, are key concepts, because they signify a clear departure from the idea that some people have an innate right to control the lives of other people, as one finds, for example, in the feudal system, in absolute monarchies, or in totalitarian states. As Geiringer and Rishworth (2017, p. 598) write: Much if not all of modern human rights law can be deduced from these simple ideas: that we live under law; that law must protect liberty; and that liberty includes not just physical freedom but the capacity to act and believe as one wishes, to express one’s ideas, to associate and assemble with others, and to be deprived of these rights only for good reason and by fair procedures. 4

Introduction

What is important, therefore, is not just the ‘right to have rights’ (Arendt 1958b, p. 298); it is also vital to have the means and the liberty to exercise them. In this regard, as Woodhead (2010) states, the CRC is seminal not only in providing comprehensive protection of children’s rights but also in affirming for the first time, in Article 12, children’s ability and right to form their own opinions and express them. This right is reaffirmed, but also strengthened, in Article 7 (Children with Disabilities) of the CRPD, which removes the requirement found in the CRC for the child to be capable of forming his or her own views and adds the requirement of providing ‘disability and age-appropriate assistance to realize that right’. It is a right which is given great importance in this handbook. In addition to a section dedicated to children’s voice, many of the chapters in the other sections also emphasise the need to listen to disabled children. What is meant by ‘listening’ is something we also consider in our final chapter, wherein we challenge all those who are concerned with disabled children’s rights, well-being, and flourishing to engage in a more ‘radical’ form of listening. The handbook also includes contributions from disabled children. We believed this was important—it would be strange, indeed, not to include their perspectives in such a handbook. Eight young disabled people, from seven countries (Ireland, Malta, Spain, Serbia, Taiwan, United Kingdom, USA), volunteered to introduce themselves, tell us about their likes and dislikes, and let us know how, if at all, they would like the world to change. Their narratives are profoundly joyful, often poignant and full of wisdom/insight. They reaffirm our belief that it is essential that any future developments in disabled children’s rights or rights-based approaches are informed by children’s perspectives.

Disability The differences that we have come to understand as impairments have been part of the human condition for at least as long as the human race has existed. Witness to that is the evidence of impairments in human remains from thousands of years ago—for example, in the skull of a child who had learning disabilities (Yong 2009) or the skeleton of a man who had paralysis (Gorman 2012). Responses to impairment and to human beings who live/d with an impairment has, however, changed over the millennia. As Hughes (2020) among others shows us, the most profound shift in perceptions and thinking in this area occurred during the second half of the 20th century. A key moment in the history of disability was when disabled people, pioneers of the disability rights movement (or disabled people’s movement)—most notably in the United States and United Kingdom—first developed a social interpretation of disability. Impairment, they argued, can present challenges (‘impairment effects’ (Thomas (1999)), but what really disables people with impairments are the various barriers that exist in the social environment, which prevent them from participating in society on an equal basis with others. Prior to the activism of these pioneers, disability was widely perceived to be a personal problem, even ‘tragedy’, associated with differences of mind or body (Oliver 1990). This model and its charitable variation did little to promote disability rights and much to perpetuate disabled people’s 5

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segregation and exclusion, even their elimination, in the case of eugenics-based policies and programmes. The social interpretation of disability challenges traditional ways of thinking about the ‘problem’ of disability—transforming it from a personal trouble into a public issue. Medical intervention and rehabilitation can attenuate impairment effects. Welfare benefits, such as disability allowances, are important for disabled people to be able to cover the extra costs that often come with having an impairment and to substitute income that could have been gained were they in employment. The provision of care also remains an important part of many disabled people’s lives, as shown by Kittay (2019) and Rogers (2016). But what the disability rights movement has taught us is that these responses, important as they are, are not enough, and sometimes they can be problematic: rehabilitation can be problematic when it is about normalisation, welfare provision can be problematic when it is paternalistic, and so on. What the disability rights movement has taught us is that what is needed is a more fundamental change within society. As the Union of the Physically Impaired Against Segregation (UPIAS 1975, p. 3) put it: [I]t is society which disables physically impaired people. Disability is something imposed on top of our impairments, by the way we are unnecessarily isolated and excluded from full participation in society. Ed Roberts’s fight to be admitted to the University of Berkeley in California as a student and to be provided with the support he needed to pursue his studies (Zames and Zames 2011) and Paul Hunt’s (1981) rejection of Miller and Gwynne’s explanation for the plight of the disabled residents of the Le Court Cheshire Home are among the many events that took place, especially in the 1960s and 1970s, that enabled the emergence of what Mike Oliver (1990) would eventually call the social model of disability. Over time, as sometimes happens when ideas travel beyond their originators, the social relational core to the social model was sometimes forgotten. Thomas (2004, p. 24) described how ‘the social model soon came to be recognised and utilised in an even more shortened form: disability is caused by social barriers not by impairments’. She revisited the original thinking of those early pioneers and rediscovered the social relational understanding of disability which emphasises barriers in the social environment, whilst also taking into account the reality of impairment effects (Thomas 1999). Her intervention was, in our view, important. Crucially, it is this understanding of disability that informs the CRPD. Whilst the Convention contains no official definition, the preamble (UN 2006, Preamble para. (e)) includes what is often understood to be a ‘non-definition-definition’ of disability as resulting ‘from the interaction between persons with impairments and attitudinal and environmental barriers’. There are, of course, other models of disability. Indeed, there has been a proliferation of models: the affirmative model, the Nordic model, the human rights model, the International Classification of Functioning, Disability, and Health (ICF) (Grue 6

Introduction

2016; Lawson and Beckett 2021; Shildrick 2019). These models represent the broad church of ideas found in disability studies regarding how best to interpret disability. What they all have in common is that they do not equate (and thus also do not conflate) disability and impairment and therefore do not place the onus squarely on the shoulder of the disabled individual to conform to ableist norms or to try to ‘fit’ a world that has been built around mythical non-disabled humans. Rather, they acknowledge the myriad factors—economic, social, cultural, political, technological, and psychological—that disable people who have impairments, that produce disablement. They also call for the removal of disabling barriers and opening up of possibilities for creating more-inclusive societies. The differences between the models have exercised academics (there is somewhat of an ‘industry’ devoted to debates about models of disability). We suggest, however, that the differences between these models are much less important than their similarities.

The Intersection of Childhood, Rights, and Disability The history of the disabled people’s movement is, perhaps inevitably, dominated by adults, whether they were born with a disability, were diagnosed with a disability in their childhood or adolescence, or became disabled in their adult life. In fact, the major battles fought by the pioneers of this movement focused on adult concerns, for example, being able to live independently, being in employment, and pursuing further and higher education. In Scandinavian countries, where developments concurrent to the events of the United States and the UK were led by parents, it was the parents of disabled children and institutionalised disabled adults who first spoke up about disability rights (Dywad and Bersani 1996; Mansell and Ericsson 1995). When it comes to the study of the lives of disabled children, as Priestley (1998) has shown, the focus for a long time was research on impairment and child development, especially within the health sciences and education. One effect of this research, he argued, is that disabled children have been positioned as vulnerable and as belonging to a homogenous group. Priestley also notes the expansion of research within both childhood studies and disability studies in the 1990s. As he observes, the two approaches fit well with each other, focusing as they do on the social construction of disability and of childhood and on the way various societal structures impinge on the lives of disabled people and of children, and therefore also of disabled children. Since then, research that is informed by disability studies and childhood studies perspectives has become well-established, as evinced by Curran and Runswick-Cole’s (2013) edited volume, Runswick-Cole et al. (2018) handbook, as well as this handbook itself. We will return to the matter of ‘disabled children’s childhood studies’ in the final chapter of this book, where we set forth our own articulation of this. What is important to note here, however, is that the work that has been conducted between disability studies and childhood studies reflects the ever-growing awareness of the cultural and environmental factors that have a negative impact on the lives of disabled children and how these factors uphold or detract from their rights. Working within these intersections has meant, and will continue to necessitate, bringing 7

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together various disciplinary approaches, including education studies, health studies, legal studies, philosophy, play studies, research methodologies, social policy, and science and technology studies, among others. Such a multidisciplinary approach reflects the complexities of the lives of disabled children and the multifarious nature of the strategies needed to ensure that their rights are upheld. It is perhaps in the upholding of the participation rights of disabled children that the confluence of the study of disability, rights, and childhood really comes into its own. Consideration of these rights is based on a view of disabled children as agents who have a right to have a say in their own lives and about the way in which their other rights are upheld, and as diverse individuals whose lives are impacted not only by impairment but also—to a larger extent—by the disabling barriers that they encounter. The chapters in this handbook have been written within this intersection. The contributors seek to provide readers with up-to-date knowledge and insights into the rights and lives of disabled children across different stages of childhood, different life domains, and different sociocultural contexts. The chapters will, we hope, enable readers to appraise the current state of affairs regarding the rights of disabled children. Furthermore, it is hoped that those who engage with the content of this handbook will be able to apply the knowledge and insights they have gained to help address the issues faced by disabled children in their daily lives—whether they be researchers or other practitioners. Finally, the analyses of the current situation of disabled children in different countries and in different life domains will, we hope, allow and, indeed, encourage readers to imagine new avenues for the realisation of disabled children’s rights—avenues that involve working with disabled children in meaningful ways, to refashion the world in inclusive ways.

Content Summary This handbook is split into four sections which reflect the conceptual framework set out in the preceding text. The current situation regarding the rights of children with disabilities is examined in the first section, Legislation and Policy, with the main focus being the CRPD and the CRC. This section opens with a chapter by Jonas Ruškus, Vice Chair of the Committee on the Rights of Persons with Disabilities. Ruškus presents the argument in favour of the human rights model of disability as the tool that can best stamp out discrimination against disabled children, particularly in the areas of institutionalisation and segregated special education. The model’s potential in promoting the dignity and evolving capacities of children with disabilities is also discussed. The next chapter, by Ignacio Campoy Cervera, also focuses on the human rights model. While the focus is on disabled children, Cervera argues that it is the human rights model that can best guarantee the recognition and protection of the rights of all children, with or without disabilities. The next two chapters provide analyses of the reports issued by the UN Committees on the Rights of Persons Disabilities and on the Rights of the Child. Bronagh Byrne examines the Concluding Observations of the Committees on the Rights of Persons Disabilities over a ten-year 8

Introduction

span regarding the implementation of Article 7 of the Convention and considers the extent to which this Convention has advanced disabled children’s rights. Anita Franklin and Zara Todd then discuss the role that children with disabilities themselves can play in the monitoring of the rights afforded to them in the two Conventions, using a participatory research project implemented in the UK as an example of how such involvement can happen. This chapter and the next one challenge assumptions that children do not have the capacity to inform high-level policy and monitoring processes. Elena Jenkin, Erin Wilson, Robert Campain, Kevin Murfitt, and Matthew Clarke report on another project, this time implemented in Vanuatu and Papua New Guinea. The priorities identified by the disabled children who participated in this project highlight the importance of taking local contexts into account in the discourse on human rights. Then, Nick Hodge, Patty Douglas, and Bronagh Byrne discuss the importance of the CRPD for asserting the rights of autistic children, especially in education. The final two chapters of this section turn the spotlight onto social policy, in particular, poverty and social security. Edgar Galea-Curmi analyses the relationship between poverty and disability, particularly in the Global North. Zara Trafford examines the impact of social protection on children with disabilities in low- to middle-income countries, with a focus on South Africa. In line with the importance of the participation rights of disabled children, the second section of this handbook is dedicated to children’s voice, within the context of the CRPD and the CRC. Using Gramsci’s notion of common sense and a critical art/activist framework, Francesca Bernardi explores how children with disabilities can be enabled to speak about their lives, thus highlighting how the respect of rights or lack of it impacts them in their individual circumstances. Elvira Psaila continues on a similar theme in the next chapter. She presents the Mosaic approach to doing research with children and then discusses how it can be used not only in research with disabled children but also by professionals in their practice and by adults in day-to-day interactions with disabled children, to make sure that their voices are heard and their perspectives taken into account. The focus then turns to disabled children’s participation rights in health-related decisions. First, Kevin De Sabbata and Elena Syurina discuss these rights in relation to the development of health guidelines, identify the barriers to disabled children’s participation in this area, and present actions to overcome these barriers. Then Rados Keravika discusses these rights at the individual level, identifying barriers and enabling factors when it comes to children with disabilities participating in the process of taking decisions about their own health-related decisions. The last three chapters in this section attend to the participation rights of children with disabilities who communicate in different ways. Karian Schuitema discusses the use of arts-based research to enable disabled children to create their own knowledge and challenge stereotypical ideas about them. Kristin Vindhol Evensen uses Merleau-Ponty’s embodied phenomenology to explore the expressivity of children with severe and multiple disabilities and the ways in which we can gain an understanding of that expressivity. Finally, Lauran Doak analyses the issues that arise when disabled children do not communicate verbally and the practices and strategies that should be adopted to discern their views. 9

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As discussed earlier, the extent to which the rights of children with disabilities are implemented or ignored often depends on the specific context in which they live. The next section therefore presents chapters that analyse various aspects of the life course of childhood, always within the context of the CRPD and the CRC. Belinda Johnson’s chapter opens this section with a consideration of the applicability of Arendt’s concept of natality to babies with disability and how we can ensure that their futures have as much hope and potential as those of other babies. Begoñia Rodriguez Díaz then discusses abortion on the basis of disability as a discriminatory and eugenic practice. On their part, Ryan H. Nelson and Jamie Christ discuss the same issue within the context of the right to abortion more widely. Next, JosAnn Cutajar analyses the situation regarding babies with disabilities born to surrogate mothers and the ethical and legal issues that arise. The rest of the chapters in this section move on from infancy to focus on disabled childhoods. Claire Reinhardt and Amy Robasse discuss the importance for health professionals to move away from framing disability in terms of a tragedy and deficit-based model and work within a social model understanding of disability with disabled children and their parents. Tammy Bachrach and her brother Timothy Woods present an auto-ethnographic perspective of the latter’s segregated educational experiences in the United States, while reflecting on developments in educational practices for children with disabilities over the past 45 years. Cara Shaw and Faraz Nickpour discuss design of assistive technology and propose what they call ‘designerly ways’ of ensuring that such design promotes the rights of children with disabilities. Continuing on this theme, Pedro Encarnação and Albert M. Cook discuss different types of assistive technologies and how they can be used to enable disabled children’s rights. The penultimate chapter in this section, by Stephanie Patterson and Kathleen McGoldrick, focuses on the ethical issues raised by ‘sharenting’, that is, the sharing on social media details about the lives of disabled children by their parents, and the effect it has on the children’s right to privacy. The section ends with a chapter by Caroline Ellison, Clara Chapman Van Duivenbode, Fiona Buchanan, and Nicole Moulding on end-of-life issues for children facing terminal illness or with life-limiting conditions. The fourth and final section of this handbook continues with the analysis of specific contexts and throws light on the various life domains in childhood and how they affect disabled children, always within the framework of the CRPD and the CRC. Education is a very important feature of childhood, and in fact, there are three chapters that tackle this subject, especially in relation to inclusive education. Frederic Fovet argues how, through the universal design for learning, schools can move away from the medical model of disability and effect the shift towards inclusion. Rodrigo Hübner Mendes and Luiza Andrade Corrêa, using the Brazilian education system as a case study, discuss the need for the right to inclusive education to be fought for through what they call ‘lawfare’ and the crucial role played by civil society in this fight. Francesca Peruzzo then turns the spotlight onto the Italian inclusive education system, which she examines through Foucault’s notion of the dispositif of power and knowledge, through which she shows how disabled children are cast as subject of 10

Introduction

medical knowledges. In the next chapter, Tom Humphries, Gaurav Mathur, Donna Jo Napoli, and Christina Rathmann examine the situation for deaf children and how their right to language is upheld or denied in different countries. Jenene Burke and Lisa Stafford then focus on play, presenting their insights into the way in which inclusive playspaces can enable disabled children to exercise their agency. Maren Metell next examines the right of children with disability to participate in music, both as a creative expression and as therapy, and the potential for music to create meaningfully accessible spaces. The next two chapters focus on disabled adolescents. Gemma Diaz-Garolera, Maria Pallisera Díaz, and Judit Fullana Noell discuss the extent to which early adolescents can exercise their right to form friendships and the role of community agents in promoting this right. Michelle Janzen tackles the topic of sexual rights. She discusses how protectionism denies disabled adolescents the right to form intimate relationships, to develop their sexuality, and to access sexual health and reproductive education. Valentina Migliarini and Chelsea Stinton then discuss the rights of migrant children with disabilities, with a specific focus on the United States and Italy. In the final chapter of this last section, Sally Robinson and Jan Idle draw on research co-produced with disabled children and young people on ways that enable them and their agency to flourish without overprotection on the one hand and abuse on the other.

References Arendt, H. 1958a. The human condition. Chicago, IL: University of Chicago Press. Arendt, H. 1958b. The origins of totalitarianism. Cleveland, OH: Meridian Books. Ariès, P. 1962. Centuries of childhood: A social history of family life. London: Penguin. Convention on the Rights of Persons with Disabilities and Optional Protocol. 2006. [online] [Accessed on 30 March 2022] Available from: www.un.org/disabilities/documents/convention/convoptprot-e.pdf Convention on the Rights of the Child. 1989. [online] [Accessed on 30 March 2022] Available from: www.ohchr.org/en/professionalinterest/pages/crc.aspx Curran, T. and Runswick-Cole, K. 2013. Disabled children’s childhood studies. In Critical approaches in a global context. Basingstoke: Palgrave Macmillan. Darwin, C. 1877. ‘A biographical sketch of an infant’. [online] [Accessed on 30 March 2022] Available from: http://darwin-online.org.uk/content/frameset?pageseq=1&itemID=F177 9&viewtype=text Dywad, B. and Bersani, H. eds. 1996. New voices: Self-advocacy by people with disabilities. Cambridge: Brookline Books. Geiringer, C. and Rishworth, P. 2017. Magna Carta’s legacy: Ideas of liberty and due process in the New Zealand Bill of Rights Act. New Zealand Law Review 4, pp. 597–634. Geneva Declaration of the Rights of the Child. 1924. [online] [Accessed on 30 March 2022] Available from: https://cpd.org.rs/wp-content/uploads/2017/11/01_-_Declaration_of_ Geneva_1924.pdf Gorman, J. 2012. Ancient bones that tell a story of compassion. New York Times. [online], 17 December. [Accessed on 3 May 2022] Available from: www.nytimes.com/2012/12/18/ science/ancient-bones-that-tell-a-story-of-compassion.html Grue, J. 2016. Disability and discourse analysis. London: Routledge. Hughes, B. 2020. A historical sociology of disability: Human validity and invalidity from antiquity to early modernity. London: Routledge.

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Anne-Marie Callus and Angharad E. Beckett Hunt, P. 1981. Settling accounts with the parasite people: A critique of A Life Apart by EJ Miller and GV Gwynne. Disability Challenge 1, pp. 37–50. [online] [Accessed on 3 May 2022] Available from: https://tonybaldwinson.files.wordpress.com/2018/04/settling-accountswith-the-parasite-people-a-critique-of-a-life-apart-by-ej-miller-and-gv-gwynne-by-paulhunt-1981.pdf James, A., Jenks, C. and Prout, A. 1998. Theorizing childhood. New York: Teachers College Press. Jarrett, S. 2020. Those they called idiots: The idea of the disabled mind from 1700 to the present day. Clerkenwell: Reaktion Books. Kittay, E. 2019. Love’s labor: Essays on women, equality and dependency. 2nd edition. New York: Routledge. Lansdown, G. 2010. The realisation of children’s participations rights: Critical reflections. In B. Percy-Smith and N. Thomas (eds.), A handbook of children and young people’s participation perspectives from theory and practice. Kindle edition. London: Routledge, pp. 11–23. Lawson, A. and Beckett, A. E. 2021. The social and human rights models of disability: Towards a complementarity thesis. The International Journal of Human Rights 25(2), pp. 348–379. Lesnik-Oberstein, K. 1998. Children in culture: Approaches to childhood. Basingstoke: Macmillan Press Ltd. Lewis. O. n.d. Stanev v. Bulgaria: On the pathway to freedom. [online] [Accessed on 3 May 2022] Available from: www.corteidh.or.cr/tablas/r29322.pdf. Mansell, J. and Ericsson, K. 1995. Deinstitutionalisation and community living intellectua disability services in Scandinavia, Britain and the USA. London: Chapman and Hall. Montessori, M. 1967. The discovery of the child. Translated by M. Joseph and S. J. Costelloe. New York: Random House. Oliver, M. 1990. The individual and social models of disability. [online] [Accessed on 3 May 2022] Available from: https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/ library/Oliver-in-soc-dis.pdf Priestley, M. 1998. Childhood disability and disabled childhoods: Agendas for research. Childhood 5(2), pp. 207–223. Qvortrup J. 1994. Childhood matters: An introduction. In J. Qvortrup, M. Bardy, G. Sgritta and H. Wintersberger (eds.), Childhood matters: Social theory, practice and politics. Aldershot: Avebury Press, pp. 1–24. Rogers, C. 2016. Intellectual disability and being human: A care ethics model. London: Routledge. Rousseau, J. J. 1993. Emile. Translated by Barbara Foxley. London: Dent. Runswick-Cole, K., Curran, T. and Liddiard, K. eds. 2018. The Palgrave handbook of disabled children’s childhood studies. Basingstoke: Palgrave Macmillan. Shildrick, M. 2019. Critical disability studies: Rethinking the conventions for the age of postmodernity. In N. Watson and S. Vehmas (eds.), Routledge handbook of disability studies. London: Routledge, pp. 32–44. Stainton Rogers R. and Stainton Rogers W. 1998. Word children. In K. Lesnik-Oberstein (ed.), Children’s in culture: Approaches to childhood. Basingstoke: Macmillan Press Ltd, pp. 178–203. Taylor, J. B. 1998. Between atavism and altruism: The child on thethreshold in Victorian psychology and Edwardian children’s fiction. In K. Lesnik-Oberstein (ed.), Children’s in culture: Approaches to childhood. Basingstoke: Macmillan Press Ltd, pp. 89–121. Thomas, C. 1999 Female forms: Experiencing and understanding disability. Buckingham: Open University Press. Thomas, C. 2004. Rescuing a social relational understanding of disability. Scandinavian Journal of Disability Research 6(1), pp. 22–36. Ulanowicz, A. n.d. Philippe Ariès. [online] [Accessed on 30 March 2022] Available from: www.representingchildhood.pitt.edu/pdf/aries.pdf

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Introduction UPIAS. 1975. Fundamental principles of disability. [online] [Accessed on 30 March 2022] Available from: https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/ UPIAS-fundamental-principles.pdf Woodhead, M. 2010. Foreword. In B. Percy-Smith and N. Thomas (eds.), A handbook of children and young people’s participation perspectives from theory and practice. London: Routledge. Yong, E. 2009. Deformed skull of prehistoric child suggests that early humans cared for disabled children. National Geographic. [online], 30 March. [Accessed on 3 May 2022] Available from: www.nationalgeographic.com/science/article/deformed-skull-of-prehistoric-childsuggests-that-early-humans-cared-for-disabled-children Zames, D. F. and Zames F. 2011. The disability rights movement: From charity to confrontation. Updated edition. Philadelphia, PA: Temple University Press.

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SECTION 1

Legislation and Policy

2 THE HUMAN RIGHTS MODEL FOR CHILDREN WITH DISABILITIES Jonas Ruškus

Introduction In 2005, the United Nations’ Children’s Fund (UNICEF) estimated that the number of children with disabilities under age 18 ranged between 93 million and 150 million, depending upon the source and on the definition of disability. The World Report on Disability (World Health Organisation 2011) estimated that 1 in 20 children has a disability. As reported by international organisations, namely, the European Union Agency for Fundamental Rights (2015), UNICEF (2018), and World Bank (2021), across all regions children with disabilities are exposed to social inequality and social exclusion, along with multiple risks, including violence, deprivation, and abuse. The 2030 Agenda for Sustainable Development (United Nations 2015) outlines the measures to be taken regarding children and persons with disabilities: poverty reduction; nutritional needs; education; gender equality; a healthy life; freedom from violence and exploitation; inclusive, safe, resilient, and sustainable human settlements; and a nurturing environment are targeted for the realisation of the rights and capabilities of children with disabilities. Recognising the seriousness of the situation of children with disabilities and the urgent need for action, international organisations launched a series of international treaties over the past decades, with the aim of recognition of the rights of children with disabilities under international human rights law. Adopted in 1979, the UN Convention on the Elimination of All Discrimination against Women of the United Nations (CEDAW) implicitly addresses the rights of girls with disabilities. Adopted in 1989, the UN Convention on the Rights of the Child (CRC) explicitly recognised the right of the child with disability ‘to enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community’ (Article 23). In 1994, the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (United Nations 1993), the resolution adopted by the UN General Assembly, called upon states to ensure

DOI: 10.4324/9781003056737-3

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equal opportunities for children with disabilities in the areas of education, health, and rehabilitation. The substantial advancement regarding the rights of children with disabilities took place in the UN through the Convention of the Rights of Persons with Disabilities (CRPD) in 2006, which resulted from the claim of persons with disabilities to redress their historical and systemic discrimination around the globe and ensure full recognition of their dignity, equality, and freedom on an equal basis with other people. Rights of children with disabilities are explicitly articulated in the CRPD within a specific article, as well as integrated across the Convention. In this chapter, I am identifying the human rights model of disability as a normative and practical response to the discrimination of children on the grounds of their impairments. In particular, the humiliation of the dignity of children with disabilities through discriminatory models of disability is stressed, especially through their institutionalisation and segregated special education. The human rights model of disability brings the recognition of dignity and evolving capacities of children with disabilities, their equality with other children and full social inclusion, along with the rights to family life and inclusive education. The considerations within this chapter are based on my status as the expert member of the CRPD Committee from 2014 and its vice-chair from 2018, and my experience of contributing to the Committee’s reviews of the states parties’ reports and its inquiries, to the development of its general comments. The latest developments regarding rights of children with disabilities are also reflected within this chapter. These are the outcome of the joint working group of the CRPD and CRC Committees, in which I was a head of the CRPD team, established for the harmonisation of the CRPD and CRC doctrines.

The Human Rights Model of Disability Through adoption of the CRPD, the paradigm of disability has changed radically through expressly recognising all persons with disabilities as subjects and holders of all human rights on an equal basis with others. As proclaimed by its purpose under Article 1, the CRPD aims ‘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’, thereby reaffirming the main human rights principles of the Universal Declaration of Human Rights (1948), such as freedom and equality of all human beings in dignity and rights. The CRPD changes legitimately and globally the disability paradigm, moving it away from discriminatory charity and medical models to the human rights model of disability. The CRPD explicitly interlinks human rights and disability through proclaiming that all matters that regard persons with disabilities hence must be addressed from the perspective of human rights. Within Article 3, through substantial principles, the CRPD delineates the human right model of disability. It includes respect for inherent dignity, individual autonomy, including the freedom to make one’s own choices, and independence of persons; non-discrimination; full and effective participation and inclusion in society; respect for difference and acceptance of persons with disabilities as part of human diversity 18

The Human Rights Model for Children With Disabilities

and humanity; equality of opportunity; respect for the evolving capacities of children with disabilities; and respect for the right of children with disabilities to preserve their identities. In General Comment No. 6 on Article 5, Equality and Non-Discrimination, the CRPD Committee (2018) stated that: The human rights model of disability recognizes that disability is a social construct and impairments must not be taken as a legitimate ground for the denial or restriction of human rights. It acknowledges that disability is one of several layers of identity. Hence, disability laws and policies must take the diversity of persons with disabilities into account. (par. 9) The CRPD equally embraces the social model of disability for emphasising barrier removal and disability and age-appropriate support for persons with disabilities, necessary for the implementation and full putting into effect of their rights, as provided by the normative character of the CRPD as the international human rights treaty. The boundaries and relation between the human rights and social models of disability are the focus of an ongoing discussion (Degener 2016; Lawson and Beckett 2021). The human rights model of disability stands on fundamental human rights and employs all means of support necessary to exercise these rights. Measures provided by Articles 2, 5, and 9 of the CRPD and explained by its Committee in its General Comment No. 6 comprise reasonable accommodation as a provision of individualised support and universal accessibility measures necessary for persons with disabilities to exercise their rights to freedom and equality for their social inclusion and full participation. It also comprises augmentative and alternative modes, means, and formats of communication and techniques and materials to facilitate social inclusion of persons with disabilities. The human rights model of disability is also backed by Article 19 of the CRPD, the provision on independent living and inclusion in the community, through recognising the autonomy of a person with disability and access to community-based personalised support and to services for the general population. The human rights model of disability also acknowledges the diversity and identity of persons with disabilities. As argued by Degener (2016), within the human rights model, the age, among other layers of identity, should be ‘considered in international human rights law and that the issue of intersectionality of discrimination has yet to be solved’ (p. 10). Intersectionality of discrimination on several overlapping grounds, including in relation to children with disabilities, is also stressed by De Beco (2020) and Lawson and Beckett (2021).

The Human Rights Standards for Children with Disabilities Based on the premise that human rights are indivisible, interdependent, and interrelated, the CRC and CRPD establish the human rights standards for children with disabilities. Through Article 7, the CRPD integrates the substantial provisions of the CRC within the disability perspective: 19

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1. ‘States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children.’ Thereby, all children with disabilities are recognised as full holders of all human rights, particularly, freedom and equality for their dignity. Freedom and equality are fundamental human rights and crosscutting principles. It is the obligation of states parties to ensure that children with disabilities experience freedom and equality without discrimination on the grounds of their impairment in all areas of life. 2. ‘In all actions concerning children with disabilities, the best interests of the child shall be a primary consideration.’ The CRPD here adopts the fundamental provision of the CRC under Article 3.1, which gives the child the right to have their best interests assessed and taken into account as a primary consideration in all actions or decisions that concern them, both in the public and private sphere. As explained by the CRC Committee in its General Comment No. 14 (2013), this part of Article 7 is a threefold concept, namely, a substantive right, a fundamental, interpretative legal principle, and a rule of procedure (par. 6). 3. ‘States Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right.’ This provision sits alongside fundamental provision of the CRC on the obligation of the states parties to ‘assure to the child who is capable of forming his or her those views the right to express one’s views freely in all matters affecting the child . . . and be provided the opportunity to be heard in any judicial and administrative proceedings affecting the child’ (Article 12). Within its General Comment No. 7 (2018a), the CRPD Committee stated:

States parties should adopt legislation, regulations and develop programmes to ensure that everyone understands and respects the will and preferences of children and considers their personal evolving capacities at all times. The recognition and promotion of the right to individual autonomy is of paramount importance for all persons with disabilities, including children, to be respected as rights holders. (par. 25) The rights of children with disabilities cut across the CRPD and CRC. Hence, both Article 16 of the CRPD and Article 19 of the CRC are about the protection of children against any kind of violence. And both the CRPD and CRC stipulate the right to health of children with disabilities respectively within their Articles 25(b) and 24.

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Although the links between the CRC and CRPD appear to be natural and reciprocal, there are some divergences between them. As observed by Kayess and Sands (2020, p. 16): [I]n the CRC, article 23 focuses specifically on children with disability and disability is incorporated into the scope of non-discrimination. However, article 23 relies on a medical model approach as it sets out obligations focused on the ‘special care’ children with disability require in relation to their ‘special needs’. De Beco (2020, p. 51) concurs with this criticism when observing: [T]he CRC has a number of drawbacks in relation to disability. It aims more at protecting disabled children against discrimination than guaranteeing their inclusion, which is often evaded on account of their human difference . . . the CRC’s separate article on disabled children refers to ‘special care’ and ‘assistance . . . provided free of charge, whenever possible’, which implies that disability is only a matter of welfare and not of rights. (p. 51) Both CRPD and CRC, by its Articles 30.5(d) and 31, include the right to participation in play, recreation, leisure, and sporting activities, though the CRPD adds equal access with other children to participation in these areas. Similarly, the human rights model of disability comes within CRPD’s Article 24 on inclusive education through stipulating the right to access to regular education on an equal basis with others and reasonable accommodations to be made to help realise this right, while the CRC’s Article 23 is less demanding as concerns equality of children with disabilities with other children and their inclusion in a regular education system. While the CRC is based on four general principles, namely, non-discrimination, children’s best interests, right to life, survival and development and the right to be heard, the CRPD is based on equality of children with disabilities with other children, their freedom through promotion of their autonomy, their full social inclusion and participation, and the respect for their evolving capacities. The human rights model of disability, as codified by the CRPD, develops and specifies the rights regarding children with disabilities. Article 23.5 of the CRPD, on the respect for home and the family, is unequivocal that ‘alternative care must be provided by the wider family and failing that, within the community in a family setting’. The CRC does not explicitly provide for alternative care, but the Committee’s (2006) General Comment No. 9 on the rights of children with disabilities addresses the issue of alternative care of children with disabilities, although in an equivocal manner. Even though urging the states parties ‘to set up programmes for de-institutionalization of children with disabilities, re-placing them with their families, extended families or foster care system’ (par. 49), the Committee

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acknowledges the placement in institution as a measure of last resort (par. 47) and calls the states parties to pay attention ‘to transforming existing institutions, with a focus on small residential care facilities organized around the rights and needs of the child, to developing national standards for care in institutions’ (par. 47). The need for harmonisation of their doctrines has been identified by both Committees and the joint working group, established with the support of UNICEF in 2019. In 2022, during the 89th and 26th sessions, respectively, the CRC and CRPD Committees adopted the Joint Statement on the Rights of Children with Disabilities (2022), in which ‘the Committees reaffirm that all principles and rights enshrined in the CRC and the CRPD are interrelated with respect to children with disabilities and are underpinned by the human rights model of disability’. Along with reminding the states parties about their obligations to ensure non-discrimination, respect for the views of children with disabilities, and inclusive education, as well as to eliminate violence, abuse, and exploitation against them, to apply the concept of the best interest of a child, both Committees reaffirmed the right to family life for children with disabilities.

The Human Rights Response to the Discrimination of Children With Disabilities The examination of the reports of the states parties by the CRPD Committee demonstrates that children with disabilities continue to be particularly exposed to discrimination and violations of their rights and experience multiple and intersecting discrimination on the basis of their age and impairment. Child protection legislation and policies often fail to ensure their non-discrimination and equality with children without disabilities, especially when it comes to family life, community living, alternative care, and education. Such gaps usually result in social segregation of children with disabilities through the means of specialised education and institutionalisation, depriving them of family life in the community, necessary to inherent dignity of any human person. Such injustices and inequities regarding children with disabilities necessitate the human rights–based response. Through the concept of the best interest of a child, the intersection between the CRC and CRPD provides a meaningful course in this regard. As explained by the CRC Committee in its General Comment No. 14 (2013, par. 5): [T]he full application of the concept of the child’s best interests requires the development of a rights-based approach, engaging all actors, to secure the holistic physical, psychological, moral and spiritual integrity of the child and promote his or her human dignity. And: [T]he purpose of determining the best interests of a child or children in a vulnerable situation [disability] should not only be in relation to the full 22

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enjoyment of all the rights provided for in the Convention, but also with regard to other human rights norms related to these specific situations, such as those covered in the CRPD. (par. 75) The human rights model of disability is reflected throughout the CRPD by several pivotal themes, determining the best interest of a child with disabilities, including but not limited to respect for inherent dignity and full and effective participation and inclusion in society. Respect for the dignity of all children with disabilities, regardless of their impairment, with the view to prevent negative stereotypes and to promote their capacities, is specifically addressed by CRPD’s Article 8 about awareness raising and respect for the dignity, capacities, and contributions of persons with disabilities, and Article 3.h about the respect for the evolving capacities of children with disabilities. Full and effective participation and inclusion in society for children with disabilities arises from recognition of their right to family life, along with the support necessary to be provided to children with disabilities and their families, with the view to prevent institutionalisation, as provided by Articles 19 and 23 of the CRPD. It also arises from recognition of the right to access mainstream education, along with reasonable accommodations, with the view to prevent educational segregation, as provided by Article 24 of the CRPD.

From Humiliation to Dignity Throughout the ages, persons with disabilities have been perceived by dominant social groups as being different from other people and deviant from social norms (Stiker 2013). Consequently, the charity and medical models of disability have expanded globally. While the first model perceives persons with disabilities as needing pity and charity, the second one comprehends disability as an individual problem to be cured, with the aim of normalising the person. Owing to both models, children with disabilities are often perceived as lacking capacities to form their own views and to exercise their right to freedom of opinion and expression. They often find themselves in a constant state of being objectified by others, professionals and parents, and being viewed as objects to be cared for or cured rather than subjects of human rights, having an independent life project and required supports for it. The Concluding Observations of the CRPD Committee on the reports of the states parties demonstrate that the charity and medical models of disability still prevail in many states parties of the Convention, especially regarding children with intellectual or psychosocial disabilities or autistic children. (This chapter refers to the Concluding Observations of various countries. These can be accessed from the Committee on the Rights of Persons with Disabilities (2022)). Cureton and Silvers (2017, p. 257) observe that ‘children with disabilities figure among those for whom the strongest and snuggest shielding [paternalism] is supposed be deployed’. They stress that ‘parents owe children with disabilities at least as much, and possibly more, respect for self-governance than other children enjoy’ (p. 258). 23

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The deficit/dysfunction-focused assessment of a child with disability significantly affects decisions and choices made in relation to family life, care, and education. Paternalistic behaviour interferes with autonomy and lessens the future life prospects of a child with disability through aforementioned subjugating patterns. The habits and practices of the charity and medical models of disability imply the humiliation of dignity of children with disabilities and the denial of their fundamental rights. Originating from philosopher Avishai Margalit (1996, p. 9), the concept of humiliation designates ‘any sort of behaviour or condition that constitutes a sound reason for a person to consider his or her self-respect injured’. Margalit explicates the concept of humiliation ‘as rejection from the human commonwealth. . . . The rejection consists of behaving as if the person were an object or an animal’ (p. 112). Such attitudes give reason to society to deem children with disabilities as less worthy than children without disabilities and, on those grounds, to place them into nonfamily alternative care and special education arrangements on the grounds of their impairments. Exclusion of children with disabilities from families and communities precludes them from decent and dignified life course prospects. Placed in nonfamily alternative care and special education, children with disabilities are humiliated through being denied their rights to develop their evolving capacities, autonomy, and agency as well through preventing making communities and facilities for general population available and accessible for persons with disabilities, including children, and creating systems of support and accommodations for them. Recognition of the dignity of a child with disability begins from the announcement of the impairment of a child to parents and from the necessary accompanying parental support. The substance and form of the healthcare professionals’ message about the impairment of the child becomes crucial. Pessimistic attitudes of professionals about the future life prospects and capacities of a child with disability seriously challenge the dignity of that child, while positive attitudes and information about supports in the community empower parents to provide strong and happy household and active participation in the community. Instead of being patho-centred, the capability approach and strengths perspective should frame the message to parents and family. Article 4.1(i) of the CRPD addresses the training of professionals working with persons with disabilities in the rights recognised in this CRPD, so as to better provide the assistance and services guaranteed by these rights. Early identification and intervention, in conformity with Article 25(b) of the CRPC, is key to recognising the child and family requirements for support and to support the child’s dignity. Services must be delivered in inclusive settings, having the aims of inclusive and independent living. There must also be policy and professional support for inclusive practice. Inclusive life course prospects for the child with disability must be presented to parents and family by professionals. Inclusive early intervention, as mentioned by Underwood, Valeo, and Wood (2012), utilises the capability approach, originated by Sen (1999) and developed by Nussbaum (2013). Capability is about what individuals are able to do. For children, capabilities are not yet realised, and the possibility that children will achieve their capabilities depends on the freedom to achieve them. For Sen (1999, p. 144), ‘the creation of social 24

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opportunities makes a direct contribution to the expansion of human capabilities and the quality of life’. According to the human rights model of disability, children with disabilities must be viewed as subjects who are part of all decision-making processes that concern them. In accordance with Article 12 of the CRC, opinion of a child must be encouraged, heard, and considered. Children with disabilities, like all other children, have experiences, ideas and views to contribute to decisions affecting them . . . with appropriate support and commitment, they are as able as all other children to communicate, advocate, collaborate, undertake research and policy analysis, organise, and claim their rights. (UNICEF 2013, p. 46) The opinions that children with disabilities make regarding their lives must be heard and taken into consideration in order to assert the dignity of a child and also to support their sense of opportunities. Practising hearing a child with disability from an early age is particularly meaningful since it enhances their dignity through personal and social growth and, consequently, through control over personal lives during their life course. The ensuring of the dignity of a child with disability is realisable on the condition of equality with other children, which implies that they are growing in a family and getting inclusive education. Yet institutionalisation and segregated special education remain the main barriers to the dignity of children with disabilities and their equality with other children.

From Institutionalisation to Family Life As stated in UNICEF’s World Report on Violence Against Children (UNICEF 2009), it has been estimated that at least 2 million children are placed in residential institutions worldwide. As observed by the Disability Rights Division of Human Rights Watch (Barriga et al. 2015, p. 286): [A] disproportionate number of children who are placed in institutions have disabilities. Many are held in abusive conditions, separated from their families and their communities, deprived of education, and neglected. The exact number of children with disabilities in institutions worldwide is unknown. Furthermore, Barriga et al. (2015, p. 300) have shown ‘that placement of a child with a disability in segregated institutions rather than in an inclusive community is rarely, if ever, in their best interest’. According to these researchers, the consequences of institutionalisation of children with disabilities are serious, since it puts these children in grave situations of risk of physical and psychological abuse, sexual violence, neglect, involuntary and inappropriate medical treatment, use of restraints and seclusion, denial of education, and denial of regular contact with families. 25

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According to the research report for the European Expert Group on Transition from Institutional to Community-Based Care (Šiška and Beadle-Brown 2020), the total number of children and adults living in institutions in Europe is nearly 1.5 million. Authors observe changes in terms of a reduction in the number of children in institutions when, in many cases, children were moved back to live with their families or were fostered or adopted, while in some countries, they ended up homeless or moved to another residential care service. The CRC Committee, in its General Comment No. 9 (2006), expressed its concern about the high number of children with disabilities placed in institutions and urged states parties to support their ability to live in their family, extended family, or foster care (para. 47). Observations made by the authors of the report echo many official states’ as well as alternative reports received by the CRPD Committee. Multitude official and alternative reports to the CRPD Committee demonstrate the extent of institutionalisation of children with disabilities across all regions. Due to the strong medical model of disability, the states of Eastern and Central Europe are particularly affected by institutionalisation on children with disabilities in residential care facilities, though numbers of them are as well in some Western European countries to the same degree. For example, according to the Replies of Russian Federation to the list of issues to the CRPD Committee (2017b, par. 65), 144 residential institutions have accommodated 272,381 children with disabilities. In Armenia, as observed by Human Rights Watch in its submission on Armenia to the CRPD Committee (Human Rights Watch 2017), there were nearly 3,700 children in residential institutions, 70% of them children with disabilities. As reported by Disability Rights International (2021), despite progress in lowering the overall institutional population of children without disabilities, Serbia has failed children with disabilities . . . who have been left behind by reforms, . . . children with disabilities make up 80% of all children living in institutional settings, where they are often mixed in with adults and face a lifetime of segregation. (p. iii-iv) In Poland, 3,610 children with disabilities were still living in institutions in 2016 (Replies of Poland to the list of issues, Committee on the Rights of Persons with Disabilities 2018b., par. 30), and there was no plan for their deinstitutionalisation (Association Institute for Independent Living 2018). In Hungary (Committee on the Rights of Persons with Disabilities 2019b, par 103(d)), hundreds of children with disabilities remain institutionalized alongside adults with disabilities in the absence of plans to ensure their right to family life. In Belgium, many children with disabilities are placed in institutions (UNIA 2019). In France, in 2014 there were 107,200 children with disabilities in institutions (Committee on the Rights of Persons with Disabilities 2020a, par. 141). The institutionalization of persons with disabilities, especially children, was a great source of concern for the Committee, which raised question on systemic changes that were adopted towards the full and complete 26

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deinstitutionalization of all children with disabilities and the realization of their right to a life in a family and community. (Committee on the Rights of Persons with Disabilities 2019a) This situation is also highlighted in the BBC World Service’s information (Hadjimatheou 2014) about 60 children being locked in cages in Lechaina’s institution. Similar trends of institutionalisation of children with disabilities are observed across Europe and in other regions around the world. In its Concluding Observations, the CRPD Committee latterly addressed the issue of institutionalisation of children with disabilities in, among others, Algeria in 2018, Philippines in 2018, Chile in 2016, Kenya in 2015, and yet more, the lack of information about children, including in institutions in some states, such as Iran in 2017 and Cuba in 2019 (Concluding Observations of the CRPD Committee). The condition of children with disabilities in many countries remains perilous, especially that of children with intellectual or psychosocial disabilities, those with autism, and those who require high levels of support in institutions, including in small-size residential care. The CRPD Committee, in its Concluding Observations to the states parties, many times expressed its concern about various forms of degrading treatment and violence against children with disabilities, including sexual violence and practices of solitary confinement, seclusion, and chemical and mechanical restrains in residential and mental health facilities. The institutionalisation of children with disabilities arises from the systematic lack of necessary support to their families. From the very announcement of disability of their child, parents experience a strong need for support which is often absent or woefully inadequate to their needs. Messages that parents receive about the actual and future capacities of their child, about their presumptive life opportunities and trajectories, usually are informed by medical model. Some families may resign their parenthood responsibilities and agree to a proposal to put their child into institution when they face insufficient support and lack of access to early-intervention services. As observed by the CRPD Committee, alternative care of a child with disability by foster, adoptive, or wider family is barely promoted by states. There, as the inquiry of the CRPD Committee found in Hungary (Committee on the Rights of Persons with Disabilities 2019b, par. 80), legislation on the protection of children, Child Protection Act in case of Hungary, while promoting placement of children under 12 years old in foster families, makes an exception in case of children with disabilities, thus promoting their institutionalisation on the grounds of their impairment. Small-size residential care is usually seen by the states parties of the CRPD as an alternative to the institutions. Instead of investing in providing a child with disability with a safe family life, states all too often engage in ‘supposed’ deinstitutionalisation, which in reality involves transferring children with disabilities from one type of institution to another, as, for example, observed by the CRPD Committee in Armenia (2017), or, as observed in the study by European Network on Independent Living (2020), ‘moved into smaller residential facilities (referred to, among other, as familylike homes, family homes and small group homes)’ (p. 30). 27

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In its General Comment No. 5, the CRPD Committee (Committee on the Rights of Persons with Disabilities 2017b, para. 16c) stated: Large or small group homes are especially dangerous for children, for whom there is no substitute for the need to grow up with a family. ‘Family-like’ institutions are still institutions and are no substitute for care by a family. Group homes, regardless of their size and heading, are no substitute for family, since they are based on work relations, such as staff–patient/client. Group homes further reiterate other features of the institution, such as segregation from substantial curriculum and extracurricular activities and play with non-disabled peers in mainstream and community-based environments, the limitation of choices within institutional setting, and the requirements of the institution itself tend to take precedence over the residents’ individual needs (Committee on the Rights of Persons with Disabilities 2017a; European Network on Independent Living 2017). To be raised by parents is a right of every child, equally of a child with disability. Parents may include unmarried parents, single parents, same-sex parents, adoptive families, kinship care, sibling care, extended family, substitute families, or foster care. In its General Comment No. 5, the CRPD Committee (2017a, paras 37, 87) stated that: [T]he core of the right to live independently and be included in the community entails a right to grow up in a family. . . . The right to living independently in the community is intimately linked with the right to family for children and parents with disabilities. (paras 37, 87) Therefore, the child’s right to live in a family, with loving and committed parents instead of with staff, is at the core of the human rights model of disability. Family life assumes living with parents, biological or, in case of alternative care, with wider, adoptive, or foster family. The parent–child relation entails being in the moment and spending quality time with the child without time boundaries, building a secure attachment in the child through natural family life relations day and night. The role of the states parties, as the human rights model of disability suggests, is to uphold the rights of a child with disability through providing the required support to family in the community, with the aim of a full social inclusion and participation of a child with disability on an equal basis with other children.

From Segregated Special to Inclusive Education Official and alternative reports to the CRPD Committee demonstrate that segregated education, generally called special education, globally remains the main form of education for children with disabilities, even after more than a decade of the adoption

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and ratification of the CRPD. Segregation occurs when children with disabilities, especially children with hearing, visual, intellectual, or psychosocial impairments, or autistic children receive their education in separate educational arrangements specifically designed for them and outside of mainstream education environments. Segregated education may also occur in mainstream education schools, in what is often known as ‘special units’ or ‘special classes’. For example, in its Concluding Observations to Greece (2019), the Committee expressed its concerns about the lack of comprehensive, clear legislation or strategy on, or allocation of funds to, inclusive education, particularly with regard to lifelong learning. In Germany, as observed by the Committee (2015), majority of students with disabilities attend segregated special schools. As regards Canada, the Committee has expressed concern regarding the persistence of segregated special education environments for students with disabilities who require a high-level of support or when it is considered that a student with disabilities may interfere in the educational process of their peers. Regarding United Kingdom of Great Britain and Northern Ireland (2017), the Committee has expressed concern at the persistence of a dual education system that segregates children with disabilities in special schools, including based on parental choice and the increasing number of children with disabilities in segregated education environments. States parties of the CRPD appear to be struggling to shift from segregated special to inclusive education system. It is of concern to the CRPD Committee that in some jurisdictions where some efforts have been made in this regard, there has been a reversal in the direction of travel. In fact, only one state party, Sweden, has been commended for its implementation of inclusive education by the Committee (2014). Here, only 1.5% of children are instructed outside of mainstream education schools. Important findings concerning Spain in relation to inclusive education have been reported in the inquiry carried out by the CRPD Committee (Committee on the Rights of Persons with Disabilities 2018c) and the views adopted by the Committee concerning individual communication (Committee on the Rights of Persons with Disabilities 2020b). In its inquiry, the Committee found that: Structural pattern of discriminatory exclusion and educational segregation on grounds of disability has been perpetuated, by means of a medical model (par. 75) . . . the Spanish education system there is no widespread recognition of the human rights model of disability and there is a lack of access to quality and inclusive education for persons with disabilities. Inclusion is understood by a large majority of teachers as a principle, trend or pedagogical method rather than as a right. (par. 76) In the views, the Committee requested Spain, as the state party of the CRPD, to: Take measures to ensure that inclusive education is considered as a right, and grant all students with disabilities, regardless of their personal characteristics,

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the right of access to inclusive learning opportunities in the mainstream education system, with access to support services as required. (par 9.b.ii) Various studies demonstrate that special education adversely affects academic achievements and task motivation (Kvande et al. 2019), academic achievements and social skills (Dempsey and Valentine 2017, Morgan et al. 2015, Lekhal 2017), and behaviours (Morgan et al. 2015). Quinlivan (2019) stresses that the denial of equal access to the right to education has the potential to negatively impact a person’s life opportunities. Special segregated education settings prevent tertiary and professional education for children with disabilities due to barriers related to the recognition and certification of qualifications acquired in special education school. Opportunities for future work and employment, and a career, are hindered for children with disabilities due to a lack of transition mechanisms from special education to mainstream lifelong learning opportunities. The grouping of children on the grounds of their impairment in segregated specialised settings, apart from the general education system and relations with non-disabled peers, generates systematic degrading and unequal conditions in terms of dignity, equality, and inclusive life course perspectives (Ruškus 2020). Education of children with disabilities must always be considered from the perspective of the human rights model of disability. Inclusive education is at the core of the rights of children with disabilities and of the human rights model of disability as well Committee on the Rights of Persons with Disabilities 2016). Sided with the capability approach, the human rights model of disability shifts the concept of meeting the needs of children with disabilities for expanding capabilities of children with disabilities. An inclusive educational setting based on the capability approach expands and equalises the actual freedom of children with disabilities to choose and achieve valued doings and beings on an equal basis with non-disabled peers. In its General Comment on Article 24 of the CRPD on Inclusive Education, and also in its Concluding Observations to the states parties, the Committee consistently addresses the issue of inclusive education in recalling the states to adopt clear, targeted, and adequately funded plans of action for the implementation of inclusive education. Further, the Committee recalls the importance of ensuring that children with disabilities receive the educational support they require, in particular through the provision of accessible school environments, reasonable accommodation, individual learning plans, assistive technology in classrooms, accessible and adapted materials and curricula. Further, it calls for guarantees that all teachers, including teachers with disabilities, receive comprehensive training on the use of Braille and sign language, with a view to improving the education of all children with disabilities, including boys and girls who are blind, deaf-blind, deaf, or hard of hearing. The Committee also consistently recommends that inclusive education should form an integral part of teacher training at university and during continuing professional

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development. It is important also to ensure that no child is refused admission to mainstream schools on the basis of disability, including pre-school and tertiary education.

Conclusion Through the CRPD, children with disabilities are recognised as full subjects and holders of all human rights at an international level. This recognition means that all children with disabilities, regardless of their impairment, are entitled to fundamental human rights, such as equality and non-discrimination, full and effective participation and inclusion in society, and respect for evolving capacities, among others. Therefore, the CRPD makes a substantial shift from discriminatory medical and charity models of disability to the human rights disability model, in order to recognise the dignity of each child with disability. Institutionalisation and segregated special education remain overriding structural factors and forms of humiliation of children with disabilities and their discrimination on the grounds of their impairments across the globe. Deprivation of family life and of education together with other children, through placing children with disabilities in particular specialised and, therefore, segregated living and educational arrangements, creates huge negative impacts for their actual and future life prospects. Through institutionalisation and segregated special education, life opportunities of children with disabilities are dramatically reduced and social exclusion becomes their most likely life course prospect. Children with disabilities are disproportionately affected by discrimination, with negative impacts regarding their life prospects in families, education, communities. As observed by the CRPD Committee, the states parties often maintain, regardless of their obligations under the Convention, lesser standards for children with disabilities than for other children, particularly regarding their alternative care and education. Most children with disabilities, particularly those with psychosocial or intellectual disabilities and autistic children, are affected by lesser standards, determining their lives in the conditions of social exclusion through decisions allowing their institutionalisation and special segregated education. The states parties of the CRPD and CRC are obliged to recognise the full scope of the rights of children with disabilities, including, as stated by the CRC and CRPD Committees (Committee on the Rights of the Child and Committee on the Rights of Persons with Disabilities 2022), their right to family life and inclusive education. The human rights model of disability should always be taken into consideration when the best interest of a child with disability is determined for preventing the discrimination and constructing participatory and inclusive life prospects of a child with disability. Promotion of evolving capacities and talents of children with disabilities within inclusive and social environments is a pivotal vector for preventing any discrimination of a child with disability on the grounds of their impairment and ensuring their dignity and full social inclusion.

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Highlights from the Joint Statement on the rights of children with disabilities of the UN Committees on the Rights of the Child and on the Rights of Children with Disabilities Human rights model of disability. The Convention on the Rights of the Child (CRC) and the Convention on the Rights of Persons with Disabilities (CRPD) recognise all children as subjects of rights. The CRPD refutes the medical and charity approaches to disability by adopting a human rights model based on the inherent dignity of persons with disabilities and the recognition ‘that impairments must not be taken as a legitimate ground for the denial or restriction of human rights’. Non-discrimination. The committees are deeply concerned by the scale of all forms of discrimination, prejudice, and stigma on the basis of disability that continue to exclude and marginalise children with disabilities. The committees recall the common obligation of states parties to the CRC and/or the CRPD to take measures to eliminate all forms of discrimination including multiple and intersectional discrimination. Best interests of the child. The committees urge the states parties to apply the concept of the ‘best interests of the child’ (. . .) with a careful consideration of their evolving capacities, their circumstances and in a manner that ensures children with disabilities are informed, consulted, and have a say in every decision-making process related to their situation. Inclusive education. The committees emphasise that high-quality inclusive education requires the education of all children on equal terms in the same general education system, adapting the educational system to the diverse educational requirements, abilities, potentials, and preferences of each child. Right to family life. States parties shall respect the right to family life for children with disabilities on an equal basis with other children. The committees agree that all children, for the full and harmonious development of their personalities, should grow up in a family, in an atmosphere of happiness, love, and understanding.

References Association Institute for Independent Living. 2018. Answers to the UN committee on the rights of persons with disabilities list of issues within the evaluation of the polish report on the implementation of the CRPD. Warsaw: Association Institute for Independent Living. Barriga, S. R., Buchanan, J., Ćerimović, E. and Sharma K. 2015. Children with disabilities: Deprivation of liberty in the name of care and treatment. In Protecting children against torture in detention: Global solutions for a global problem. Thematic report American University. Washington, DC: Washington College of Law, pp. 285–302. Committee on the Rights of Persons with Disabilities. 2016. General comment No. 4 on the right to inclusive education. CRPD/C/GC/4. [online] [Accessed on 8 April 2022] Available from: https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download. aspx?symbolno=CRPD/C/GC/4&Lang=en

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The Human Rights Model for Children With Disabilities Committee on the Rights of Persons with Disabilities. 2017a. General comment No. 5 on living independently and being included in the community. CRPD/C/GC/5. [online] [Accessed on 8 April 2022] Available from: https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download.aspx?symbolno=CRPD/C/GC/5&Lang=en Committee on the Rights of Persons with Disabilities. 2017b. List of issues in relation to the initial report of the Russian Federation. Replies of the Russian Federation to the list of issues. CRPD/C/RUS/Q/1/Add.1 [online] [Accessed on 8 April 2022] Available from: https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download.aspx?symbolno= CRPD%2FC%2FRUS%2FQ%2F1%2FAdd.1&Lang=en Committee on the Rights of Persons with Disabilities. 2018a. General comment No. 6 on equality and non-discrimination. CRPD/C/GC/6. [online] [Accessed on 8 April 2022] Available from: https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download. aspx?symbolno=CRPD/C/GC/6&Lang=en Committee on the Rights of Persons with Disabilities. 2018b. Replies of Poland to the list of issues to the CRPD Committee, par. 30. CRPD/C/POL/Q/1/Add.1. [online] [Accessed on 8 April 2022] Available from: https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download.aspx?symbolno=CRPD%2FC%2FPOL%2FQ%2F1%2FAdd.1&Lang=en Committee on the Rights of Persons with Disabilities. 2018c. Inquiry concerning Spain carried out by the Committee under article 6 of the optional protocol to the convention. CRPD/C/20/3. [online] [Accessed on 8 April 2022] Available from: https://tbinternet. ohchr.org/_layouts/15/treatybodyexternal/Download.aspx?symbolno=CRPD%2FC%2F 20%2F3&Lang=en Committee on the Rights of Persons with Disabilities. 2019a. Committee reviews initial report of Greece, asks about situation of refugees and asylum seekers with disabilities. [online] [Accessed on 8 April 2022] Available from: www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=24951&LangID=E Committee on the Rights of Persons with Disabilities. 2019b. Inquiry concerning Hungary carried out by the Committee under article 6 of the optional protocol to the convention. CRPD/C/HUN/IR/1. [online] [Accessed on 8 April 2022] Available from: https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download.aspx?symbolno=CRPD%2F C%2FHUN%2FIR%2F1&Lang=en Committee on the Rights of Persons with Disabilities. 2020a. Replies of France to the list of issues in relation to its initial report. CRPD/C/FRA/RQ/1. [online] [Accessed on 8 April 2022] Available from: https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/ Download.aspx?symbolno=CRPD/C/FRA/RQ/1&Lang=en Committee on the Rights of Persons with Disabilities. 2020b. Views adopted by the Committee under article 5 of the optional protocol, concerning communication No. 41/2017. CRPD/C/23/D/41/2017. [online] [Accessed on 8 April 2022] Available from: https:// tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download.aspx?symbolno= CRPD/C/23/D/41/2017&Lang=en Committee on the Rights of Persons with Disabilities. 2022. Concluding observations. [online] [Accessed on 8 April 2022] Available from: https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/TBSearch.aspx?Lang=en&TreatyID=4&DocTypeID=5 Committee on the Rights of the Child. 2006. General comment no. 9 on the rights of children with disabilities. CRC/C/GC/9. [online] [Accessed on 8 April 2022] Available from: https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download.aspx?symbolno= CRC%2FC%2FGC%2F9&Lang=en Committee on the Rights of the Child. 2013. General comment no. 14 on the right of the child to have his or her best interests taken as a primary consideration. CRC/C/GC/14 [online] [Accessed on 8 April 2022] Available from: https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download.aspx?symbolno=CRC%2FC%2FGC%2F14&Lang=en Committee on the Rights of the Child and Committee on the Rights of Persons with Disabilities. 2022. Joint statement on the rights of children with disabilities. [online] [Accessed on

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Jonas Ruškus 8 April 2022] Available from: www.ohchr.org/sites/default/files/2022-03/CRC-CRPDjoint-statement_18March2022.docx. Cureton, A. and Silvers, A. 2017. Respecting the dignity of children with disabilities in clinical practice. HEC Forum 29, pp. 257–276. De Beco, G. 2020. Harnessing the full potential of intersectionality theory in international human rights law: Lessons from disabled children’s right to education. In S. Atrey and P. Dunne (eds.), Internationality and human rights law. London: Hart Publishing, pp. 39–58. Degener T. 2016. Disability in a human rights context. Laws 5, p. 35. Dempsey, I. and M. Valentine. 2017. Special education outcomes and young Australian school students: A propensity score analysis replication. Australasian Journal of Special Education 41(1), pp. 68–86. Disability Rights International and Mental Disability Rights Initiative of Serbia. 2021. Serbia’s forgotten children. [online] [Accessed on 18 February 2022] Available from: www.driadvocacy.org/wp-content/uploads/Serbia-2021-web-ENG-1.pdf. European Network on Independent Living. 2017. European union Structural and investment funds and the transition from institutional care to community living: Towards a more Effective monitoring and complaints system. Brussels: EU Funds for Our Rights Campaign—Briefing. European Network on Independent Living. 2020. Lost in Interpretation. The use of ESI Funds during 2014–2020 and the impact on the right of persons with disabilities to independent living (The report commissioned by the European United Left/Nordic Green Left (GUE/NGL) group in the European Parliament). Brussels: European Network on Independent Living. European Union Agency for Fundamental Rights. 2015. Violence against children with disabilities: legislation, policies and programmes in the EU. Luxembourg: Publications Office of the European Union. Hadjimatheou, C. 2014. The disabled children locked up in cages. BBC World Service. [online] [Accessed on 20 March 2019] Available from: www.bbc.com/news/magazine-30038753 Human Rights Watch. 2017. Submission on Armenia to the Committee on the Rights of Persons with Disabilities. [online] [Accessed on 8 April 2022] Available from: https:// tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download.aspx?symbolno=INT%2f CRPD%2fCSS%2fARM%2f26795&Lang=en Kayess, R. and Sands, T. 2020. Convention on the rights of persons with disabilities: Shining a light on social transformation. Sydney: UNSW Social Policy Research Centre. Kvande, A., Bjørklund, O., Lydersen, St., Belsky, J. and Wichstrøm, L. 2019. Effects of special education on academic achievement and task motivation: A propensity-core and fixedeffects approach. European Journal of Special Needs Education 34(4), pp. 409–423. Lawson, A. and Beckett A. E. 2021. The social and human rights models of disability: Towards a complementarity thesis. The International Journal of Human Rights 25(2), pp. 348–379. Lekhal, R. 2017. Does special education predict students’ math and language skills? European Journal of Special Needs Education 33(5), pp. 1–16. Margalit, A. 1996. The decent society. London: Harvard University Press. Morgan, P., Farkas, G., Hillemeier M. M., Mattison, R., Maczuga S., Li, H., Cook,. M. 2015. Minorities are disproportionately underrepresented in special education: Longitudinal evidence across five disability conditions. Educational Researcher 44(5), pp. 278–292. Nussbaum M. C. 2013. Creating capabilities. The human development approach. Cambridge: Belknap Press of Harward University Press. Quinlivan, S. 2019. Reasonable accommodation: An integral part of the right to education for persons with disabilities. In G. De Beco, S. Quinlivan and J. E. Lord (eds.), The right to inclusive education in international human rights law. Cambridge: Cambridge University Press, pp. 169–189. Ruškus, J. 2020. Inclusive education as the turning point for the dignified life course of children with disabilities. In M. A. Brown (ed.), International perspectives on inclusion within society and education. London: Routledge, pp. 117–130.

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The Human Rights Model for Children With Disabilities Sen, A. 1999. Development as freedom. Oxford: Oxford University Press. Šiška, J. and Beadle-Brown, J. 2020. Transition from institutional care to community-based services in 27 EU member states: Final report. Research report for the European Expert Group on Transition from Institutional to Community-based Care. Supported by European Commission. Stiker. J. H. 2013. Corps Infirmes et Societés. Essais d’anthropologie historique. Paris: Dunod. Underwood, K. Valeo, A. and Wood, R. 2012. Understanding inclusive early childhood education: A capability approach. Contemporary Issues in Early Childhood 13(4), pp. 290–299. UNIA. Interfederal Centre for Equal Opportunities. 2019. Submission to the committee on the rights of persons with disabilities, information for list of issues prior to reporting, Belgium. [online] [Accessed on 18 February 2022] https://tbinternet.ohchr.org/_layouts/15/ treatybodyexternal/Download.aspx?symbolno=INT%2fCRPD%2fICS%2fBEL%2f33842 &Lang=en UNICEF. 2009. Progress for children: A report card on child protection. World Report on Violence against Children. [online] [Accessed on 8 April 2022] Available from: www.unicef.org/ media/86451/file/Progress_for_Children-No.8_EN_081309.pdf UNICEF. 2013. Take Us seriously! engaging children with disabilities in decisions affecting their lives. [online] [Accessed on 8 April 2022] Available from: https://sites.unicef.org/disabilities/files/Take_Us_Seriously.pdf UNICEF. 2018. In focus: Including children with disabilities. Available from: www.unicef. org/eca/reports/focus-including-children-disabilities United Nations. 1993. The standard rules on the equalization of opportunities for persons with disabilities. A/RES/48/96. [online] [Accessed on 18 February 2022] Available from: www. un.org/disabilities/documents/gadocs/standardrules.pdf United Nations. 2015. Transforming our world: The 2030 agenda for sustainable development. [online] [Accessed on 18 February 2022] Available from: www.worldbank.org/en/ topic/disability#1 Universal Declaration of Human Rights. 1948. [online] [Accessed on 18 February 2022] Available from: www.ohchr.org/en/udhr/documents/udhr_translations/eng.pdf. World Bank. 2021. Disability inclusion. [online] [Accessed on 18 February 2022] Available from: www.worldbank.org/en/topic/disability World Health Organisation and The Word Bank. 1994. The world report on disability. 2011. [online] [Accessed on 18 February 2022] Available from: www.who.int/disabilities/world_ report/2011/report.pdf

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Vignette One MEET AURORA

Who am I? An 18-years-old girl. A daughter. A sister. A niece. Somebody’s friend. I am a disabled person. I have cerebral palsy. I am Aurora. I am everything aforementioned, and yet I am seen by many others only as a disabled person. It is difficult to describe someone’s life in a few words, especially if we’ve just met. What you see first is my wheelchair, which enables me to move around, and my smile, of course. Wait there; before you even think it, I have to ask you to stop. I am not suffering. I am happy. We have only two options in our lives: be happy with what we’ve got or be sad about what we don’t have. I was born, and my struggle had already begun then. As I was growing up, I found myself in all kinds of situations which were quite challenging. Throughout my life, I’ve never thought, ‘Why me?’ There was never a need for such thoughts. I have a huge desire to live, in me. Now, you might be asking yourself, Where did I get the strength for everything? Sometimes I even ask myself where it came from, although I am convinced that it is about the wonderful people around me. My irreplaceable family. They have taught me that no one should be solving it all for me (although they still have to be around, because I am not fully independent) and that I will have to make my own conclusions and decisions. No one else. Just me. The world of adults, which everyone is scared of, has always been my world. The world where you have to be aware of everything that surrounds you. People don’t even notice the biggest challenge I am facing: the stairs. If we were in a cartoon, the stairs would be my arch-enemy. For most people, stairs are something normal, while for me it determines where I can go. It’s interesting that no one really notices the stairs before they meet me. What keeps me going is that strength. I am not the one who easily gives up. I have learned to see the world as it is. With all its faults and virtues. This is why I shouldn’t forget to mention one very important thing: understanding. The comments I receive DOI: 10.4324/9781003056737-4

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are part of the stereotypes and prejudices which we carry in ourselves ever since ancient times. It’s not just the issue of disabled people; it is also about some small, hardly noticeable things which may hurt. The comments about how someone is dressed, which is really about our identity. It is normal that we will sometimes hear some bad comments about ourselves. What makes a difference is how we react after. We shouldn’t react aggressively. Humans make mistakes. We are nothing but ordinary humans. There is no other way to correct mistakes but through kind words and conversation. Not with aggression. When showing understanding, you get understanding in return, and that’s what I want. There is no planet B; there is only this one. And we all need to find a place for ourselves on this planet. I love to make a comparison with a jigsaw puzzle. For example, the people are jigsaw pieces of different shapes and colours and parts of a bigger picture. Each piece has its own place but can seemingly look alike to some other piece and be placed in the wrong spot. The picture will not be complete. Time will tell where the right spot for each of us is. The spot that is no one else’s, just ours. Aurora is 18 years old and lives in Serbia. Thank you to Radoš Keravica (University of Leeds) for supporting Aurora to submit this narrative.

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3 FOR THE FULL INCORPORATION OF THE RIGHTS OF CHILDREN, WITH OR WITHOUT DISABILITIES, INTO THE HUMAN RIGHTS MODEL1 Ignacio Campoy Cervera Introduction In our contemporary societies, certain groups of people live in a particularly vulnerable situation due to experiences of marginalisation or social exclusion. Members of these groups are excluded on the basis of certain aspects of their identity (e.g. ethnicity, religion, sexuality, class or caste, disability). Existing political, legal, and social structures and processes have disadvantaged marginalised groups in comparison to other social actors, limiting their ability to participate effectively in social relations, exercise their rights on an equal basis, and consequently, be able to achieve, with the same chances of success, the fulfilment of their life plans and, thus, the free development of their own personalities. Conversely, those capacities must be guaranteed by an adequate human rights system. It is understood that human rights are the moralpolitico-juridical tools for countering these processes, ensuring that the maximum possible number of people can make life plans, act towards their effective fulfilment, and thus attain the maximum possible development of their own personalities (Campoy Cervera 2022). Children with disabilities are one such marginalised group. They experience social exclusion on at least two counts: (i) as children (the result of processes and practices of adultism) and (ii) as disabled people (the result of processes and practices of ableism). The solution to this social marginalisation must involve finding a way to fully incorporate the rights of children, with or without disabilities, into the human rights model. In this chapter, I will attempt to provide guidelines for this endeavour. With this aim, in the first part I analyse the two models currently in force: what I have DOI: 10.4324/9781003056737-5

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called ‘renewed’ protectionism, with regard to children, and the social model of disability, with regard to persons with disabilities. First, I briefly explain how these models emerged out of the need to transcend previous models: what I have called ‘traditional’ protectionism regarding children and the medical model of disability regarding persons with disabilities. Secondly, I analyse the two current models and the effective recognition and protection of the rights of children, underlining the particular importance of the two fundamental principles of the 1990 Convention on the Rights of the Child (hereafter, CRC): protection of children’s best interests and their participation in the decision-making process for all questions affecting them. Finally, I point out that we need to go beyond both models in order to incorporate the rights of children, with or without disabilities, into the human rights model. In the second section, I propose the main considerations that need to be considered when developing a system for the recognition and protection of children’s rights—with or without disabilities—which is in keeping with the human rights model and current international human rights law. I then go on to explain how these considerations are supported by the interpretation which must be made of the aforementioned two basic principles of the CRC, in line with the interpretation already done by the Committee on the Rights of the Child and which is made obligatory by the new paradigm of the human rights model that the 2008 Convention on the Rights of Persons with Disabilities (hereafter, CRPD) opens for people with disabilities.

Renewed Protectionism and the Social Model of Disability Transcending the Traditional Protectionism Model and the Medical Model of Disability The renewed protectionism and the social model represent the superseding of two models: that of traditional protectionism, with regard to children, and the medical model, regarding people with disabilities. Broadly speaking, these models have been predominantly in force from the 17th century, in the case of protectionism, and from the beginning of the 20th century, in the case of the medical model, until the 1970– 1980s. During those decades of the 20th century, primarily in Anglo-Saxon societies, both models were openly criticised and began to be phased out. In this process, the subsequent approval of the UN CRC and CRPD proved decisive. The protectionist model (Campoy 2006) is based on the conception of the child according to which children are considered to be helpless, imperfect, and incompetent. It is further understood that these characteristics are inherent to all human beings during their development as independent people, until a person reaches maturity at adult age. It is, therefore, adult maturity, which is understood to allow people to fend for themselves in society and lead full, independent lives. Meanwhile, it is necessary to protect children, both from possible acts by third parties and from their self, without any need to pay attention to the desires or opinions which the child may express. 40

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In accordance with this approach, another idea was formed, which was finally to become the cornerstone for the justification of the protectionist model: through the measures adopted to put this protection into practice, one should always act so as to achieve the best for the child, in their best interests, although, in fact, protecting the child’s interests without paying attention to their desires and opinions results in it being the will of third parties—generally the parents—which completely direct the child’s life according to their own wishes and opinions. Thus, despite what is expressly stated, the child’s interests could always be relegated to second place or even sacrificed to other possible conflicting interests, for example, those of political power or, most frequently, those of the child’s own parents (Seymour 1995). As for the medical model, this approach conceives people with disabilities to be invalids, also in some way imperfect and incompetent, who suffer their situation due to their physical, sensorial, or mental problems, and so should overcome their ‘defects’ or ‘deficiencies’ in order to adapt themselves as far as possible to existing society. For this purpose, they were offered suitable medical treatment or, where applicable, financial or social benefits, which in some cases came to be conceived of almost as charity (Palacios 2008). Naturally, these ideas combined to generate a conception of the child with disabilities as an imperfect person, helpless and incompetent, an invalid who must be the object of constant, special protection by third parties, mainly their parents. This led to a greater underestimation of the real capacities of the child with disabilities and to them being treated differently from other children (Campoy 2013).

The Construction of the Renewed Protectionism Model and the Social Model of Disability As indicated earlier, it was from the 1970s onwards that both models, that of traditional protectionism and the medical model, began to be seen as obsolete and unjustified. The ideas promoted by movements occurring mainly in the United States of America and Great Britain contributed significantly to this change, and thus, the two models which were to replace them, the renewed protectionism and the social model, began to take shape. In order to overcome the traditional protectionism approaches, it was important to denounce the failure of the model that was done by authors (Farson 1974, Holt 1974, or Cohen 1980) and even organisations led by children themselves, such as the Youth Liberation of Ann Arbor (1977a, 1977b). Authors and organisations who could be considered as builders of a different model, referred to as liberationist movement, which developed in the 1970s in the United States and Great Britain, the countries in which so many social liberation movements developed (Gross and Gross 1977). It was also alongside those changes produced by the social liberation movements that the social movement of people with disabilities also emerged, led by persons with disabilities themselves (Shakespeare 2008). According to renewed protectionism, the child is conceived as a person whose capacities—especially the cognitive ones—are in a continuous process of development, and relevant distinctions are made between the different stages of life children pass 41

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through (Freeman 1995; Hierro 1994). Thus, it is understood that the child will only gradually acquire sufficient experience and maturity of judgement to be able to determine what their real interests are and how to satisfy them appropriately (Worsfold 1974). This means that a more realistic study of children’s real wishes and preferences must be undertaken so that they can effectively participate in the exercise of their rights. But this model failed to overcome the influence of the protectionist myth, as it was understood that, as a general rule, childhood is principally characterised by innocence, helplessness, and relevant moral and intellectual deficiencies which, in theory, prevent children from performing genuinely conscious and responsible acts. Consequently, although it is already understood that the child’s participation in decision-making processes for all the questions affecting them must be ensured, it is also assumed that the child’s opinion must necessarily be evaluated according to their age and maturity by competent third parties who must take decisions for protecting their best interests (Coady 1995; Oficina del Alto Comisionado para los Derechos Humanos 1998). The social model introduces a far-reaching change by claiming that disability, which affects certain people within society, can be reinterpreted as a disadvantage or restriction to their full participation in society and to the taking of decisions about their lives. Disability thus is due to the way in which society has been conceived and developed, in a way which fails to consider, or consider sufficiently, persons with disabilities, and, for this reason, excludes them socially. Therefore, this model establishes the need to act above all with regard to the social causes, in order to guarantee the full social inclusion of persons with disabilities. Both models—renewed protectionism and the social model of disability—decisively surpass the previous models, sharing a common conception of children and of people with disabilities as people with the same value and dignity as everyone else. In this way, they defend the social inclusion of children and persons with disabilities through suitable recognition and protection of all their rights. However, both models continue to imply that children, without and, above all, with disabilities, are people basically characterised by a special helplessness and by some deficiencies which mean they deserve special protection and prevent them in general from taking decisions about their lives in the free exercise of their rights.

The Crucial Importance of Two Common Fundamental Principles: Protection of the Child’s Best Interests and the Child’s Right to Participate in all the Questions Affecting Them The special protection of the child, with or without disabilities, and the recognition of their equal dignity, their consideration as a subject of law—as a rights-holder— with due respect for the evolution of their faculties, in fact, respond, in a significant way, to two basic principles supporting renewed protectionism and which the social model of disability has also embraced: the protection of the child’s best interests and the child’s right to participate in all the questions affecting them. Both principles were duly recognised in the CRC—Articles 3.1 and 12—and the CRPD—Article 7. However, it is easy to see that the wording of both Articles is extremely vague, 42

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open to very different interpretations, both regarding their meaning and regarding the determination of the way in which they should be applied (Alston and GilmourWalsh 1996; Detrick 1992). Initially, it could be understood that the two principles have different bases, which are not always compatible (Archard 2015). The protection of the child’s best interests is linked to a paternalist basis, while the recognition and protection of the child’s right to participate in decision-making on all the issues affecting them is linked to the basic value of freedom in the taking of relevant decisions. However, there is a need to make the two principles compatible. In fact, renewed protectionism has already attempted to do so by pointing out, firstly, that children’s participation is necessary in order to determine what their best interests are and how to satisfy them and, secondly, that actual respect for the child’s participation has its limit, precisely in the protection of their best interests. Thus, it is understood that the child’s participation forms a part of what could be considered the child’s own interests and also serves to realise such interests. Furthermore, the Committee on the Rights of the Child itself has also tried to make the two principles compatible along the same lines and has even denied that there is any real conflict between them. Thus, in paragraph 74 of General Comment No. 12 (UNCRC 2009), the child to be heard (and in the same vein in paragraph 43 of General Comment No. 14 (UNCRC 2013), on the right of the child to have his or her best interests taken as a primary consideration (art. 3, para. 1)): There is no tension between articles 3 and 12, only a complementary role of the two general principles: one establishes the objective of achieving the best interests of the child and the other provides the methodology for reaching the goal of hearing either the child or the children. However, this approach remains within the arena of protectionism, because the central idea is still that children, due to their inherent incapacities, cannot freely exercise their rights. Only gradually, as they grow up and mature, would their will acquire legal relevance, although it must always be given due weight in accordance with the age and maturity of the child. Despite the important exceptions in current legal texts, as a general rule, the child cannot exercise their rights freely, because it is assumed that the exercise of their rights by the child without control could constitute a danger to themselves as well as to others. Thus, it continues to be thought necessary to protect children in fundamental aspects to ensure their proper development and also to protect them from their own decisions, so that it is ‘competent’ third parties who actually take decisions for them. But that approach is unsatisfactory, because it fails to give adequate legal relevance to the child’s will, regardless of their age, in the taking of decisions which affect them; these ideas are not compatible with a system of rights of children in general and children with disabilities in particular which fits in with the human rights model. 43

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The Full Incorporation of the Rights of Children, With or Without Disabilities, Into the Human Rights Model The Interpretation of the Principles of the Child’s Best Interests and the Child’s Participation in All the Questions Which Affect Them in Accordance With the Human Rights Model In the previous section, I analysed how renewed protectionism and the social model of disability interpreted the principles of protection of the child’s best interests and their participation in all issues affecting them—contained in Articles 3.1 and 12 of the CRC and 7 of the CRPD—and explained why this interpretation is not satisfactory. I now seek an interpretation of both principles which is more in harmony with a recognition and protection system for the rights of children, with or without disabilities, in keeping with the human rights model. Thus, although it could be understood that both models, the renewed protectionism model and the social model, can be complementary with the human rights model (Hierro 2007; Lawson and Beckett 2021), the latter—especially if we attend to the rights of children with disabilities—goes beyond them, and it is more justified. Thus, if we wish to give an objective meaning to the term ‘the best interests of the child’ within human rights discourse, we should seek the meaning which can be attributed to ‘the best interests’ of any other person: to attain the free development of one’s own personality, the possibility of drawing up one’s own life plans and acting so as to effectively fulfil them. In that regard, it is very enlightening that the Committee on the Rights of the Child clarifies, in paragraph 43 of General Comment No. 14 (UNCRC 2013), on the right of the child to have his or her best interests taken as a primary consideration (art. 3, para. 1), that ‘[t]he concept of the child’s best interests is aimed at ensuring both the full and effective enjoyment of all the rights recognised in the Convention and the holistic development of the child’. Furthermore, the participation of the child in decision-making processes is fundamental, because it is based on the idea that the free development of each individual’s personality can only be achieved if they can draw up their own life plans and act for their effective fulfilment. Each individual is, therefore, the only person who can decide how to fulfil this development. It is precisely for this purpose that people are protected in the free exercise of their rights, according to their will (Campoy 2004; De Asís 2004; De Asís 2001; Peces-Barba 1999). So taking into consideration the need to protect children’s involvement also means understanding that there are certain measures which must be taken in order to be able to guarantee that it is the children themselves who act in order to attain the free development of their own personalities. For this reason, we must guarantee that children are protected in the free exercise of their rights, according to their will. In this way, a conflict between the two principles would arise if a child, in the free exercise—according to their will—of their rights, were to act against the attainment of the free development of their own personality. This does not cease to be the manifestation of an apparent logical inconsistency, which involves observing that, although the only way to attain the free development of our own personality 44

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is to act according to our will, on occasion it is precisely an action taken according to our will which would run counter to the free development of our own personality. It is an apparent incoherence which places us right in the arena of paternalism. Thus, it is important at this point to try to determine what the criteria that make it possible to justify the application of suitable paternalistic measures might be. However, the subject of paternalism is extremely broad and complex. In what follows I merely explain, very briefly, the main criteria one would have to consider in order to determine the existence of a kind of paternalism which could be justified in accordance with the aim of respecting the free development of individuals’ personalities—including, evidently, children, with or without disabilities—and, consequently, in order to construct a recognition and protection system for the rights of children, with or without disabilities, in conformity with the human rights model (Campoy 2007a). Thus, first of all, it should be understood that justified paternalist measures refer to situations in which it would be justified to act in opposition to what a person expressly indicates they wish to do in application of the free exercise of their will, because it is thought that if they were permitted to perform such an action, one would be allowing considerable harm to be done to the free development of their own personality (Camps 1989; Garzón 1989). The apparent contradiction which seems to arise between acting against the will expressed by the person and respect for the life plans which they have freely made is resolved by considering that this respect means giving priority to what constitutes the person’s real will, as opposed to their manifest will. That is to say, one must accept that on occasion the will expressly declared by a person may not correspond to what must be considered to constitute their real will, the exercise of which would permit the free development of the individual’s personality. This kind of paternalism can be justified, therefore, because the aim pursued by the persons or institutions acting paternalistically consists in all cases of respecting and fulfilling the real will of the person to whom the paternalistic measure is applied. In this regard, it is necessary to bear in mind that the significant lack of one of the following three factors could distort a person’s will, thus modifying their real will: the possibility of using the faculties of reason, sufficient information about the circumstances relevant to the decision to be taken, and the experience to be able to evaluate this information properly. This makes it possible to understand that the fulfilment, on such occasions, of the will expressly indicated by the individual could produce significant harm to the proper development of their own life plans and that this could justify a paternalist measure being adopted, acting in opposition to that which the person has expressly declared (Dworkin 1988). Anyhow, one needs to be aware that the stricter the conditions believed necessary in order to consider that a person possesses this capacity to exercise their real will are, the closer one gets to moral perfectionism (Nino 1989). Therefore, these conditions should not be interpreted too rigorously. Regarding children’s rights, it is extremely important to observe that these factors, which make up the capacity to take decisions wisely, could be understood also to constitute what both the CRC and the CRPD refer to as the ‘maturity’ of the child. 45

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In fact, the Committee on the Rights of the Child itself clarifies, in paragraph 30 of General Comment No. 12 (UNCRC 2009), the right of the child to be heard: Maturity refers to the ability to understand and assess the implications of a particular matter, and must therefore be considered when determining the individual capacity of a child. Maturity is difficult to define; in the context of article 12, it is the capacity of a child to express her or his views on issues in a reasonable and independent manner. In any case, taking seriously the fact that the real will of the person must always be respected means that, when we act contrary to the will expressed by them, we must be able to justify very clearly that the will expressed does not correspond to their real will, and that the consequences of the proposed action would significantly harm the attainment of their own life plans. In this respect, there are two considerations. Firstly, the harm which would supposedly arise from the course of action taken in accordance with the will expressed by the person must clearly run contrary to what we could presuppose would be acceptable to that person if they had sufficient maturity (i.e., the possibility of using the faculties of reason and the adequate information and experience). Secondly, such harm must be probable and considerable for the attainment of their own life plans. Thus, the less the consequences of the manifestly wished-for action would affect the present and future development of their potential life plans, the less paternalist action contrary to this expressly indicated will would be justified. Finally, transferring all these considerations to the sphere of the rights of children, with or without disabilities, allows us to draw five important conclusions: 1. One way of clearing up the underlying conflict between the two basic principles of the protection of the child’s best interests and the protection of the child’s right to take part in all the questions which affect them is by understanding that, with both, what one really has to do is protect what must be considered as constituting the real will of the child. 2. The possible conflict which may arise in the practical application of the two principles can be resolved by applying the same criteria for any paternalistic measures which may be considered necessary to adopt with respect to any person’s decision. 3. When taking a decision in the exercise of their rights, we must always start from the due respect to the will expressed by the child, with or without disability, as must be done towards any person. But we must also be aware that such respect does not mean allowing the child, or anyone else, to always be able to exercise their right without any other consideration than their expressed will. There may be occasions that justify acting paternalistically, despite the expressed will of the child (as would be with any person). In fact, it will be necessary to do so when the following two conditions are met (beyond, of course, cases of damage to third parties): that there are good reasons to justifiably presuppose that the child, due to lack of ‘maturity’, is not really aware of the consequences which may 46

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arise from the course of action which they expressly express they wish to carry out, or not carry out, and that there is a considerable probability that as a result of those unforeseen consequences, the attainment of their life plans, or the free development of their personality, will be prevented or hindered. 4. Should the corresponding paternalistic measure be taken, looking for the attainment of the free development of the child’s personality, in spite of what the child declares, one must make the decision which one could presuppose the child would make, for that specific case and at that precise time in their life, if they had sufficient maturity. One would have to take the child’s particular personal situation into account and act in a way which was coherent with what, until then, had been the design and development of their life plans and the development of their own personality. In other words, one would have to act in accordance with what one understood to be, at that time and for that specific decision, the real will of the child (Eekelaar 1995,1994). In this way, it is important to underline that these considerations apply to any child, whatever their personal condition or age. 5. Age and disability cannot be general criteria for limiting the capacity to act. Their use must be kept to a minimum and must be clearly justified. In this regard, it is understood that age and disability can occasionally be sufficient criteria to presuppose that the child has not sufficient ‘maturity’ to freely exercise some of their rights. However, it would be necessary to provide solid reasons for that limitation regarding the specific right in question. Therefore, the legislator would have to carry out an individualised study of those criteria for each right. The idea is that it would be possible to limit the exercise of a right if there would be a justifiable presumption that the child, under the proposed age threshold or with a certain disability, lacked sufficient maturity to be able to freely exercise this right. (Foster Jr. and Freed 1972; Rodham 1974). Thus, a valid criteria for limiting the capacity to act for age or disability only would be if there is a certain probability that, as a result of the consequences of the free exercise of the right for the person under a certain age or with certain disability, the attainment of their life plans or the free development of their personality would be prevented or significantly hindered (or a harm would unlawfully be done to third parties). The reduction of those criteria of age and disability to a minimum also means that the necessary discretion, which the setting of any limit involves, must be suitably attenuated by structuring the recognition and protection system for children’s rights, in line with the human rights model, in an open way. Therefore, if it is proved that a person, regardless of age or disability, has the maturity required for the free exercise of the right concerned, then they may have at their disposal the means necessary for the free exercise of their right. If it is proved that a person, regardless of age or disability, does not have the sufficient maturity, then they may have at their disposal access to the support measures necessary to suitably exercise this right in accordance with what could be considered to constitute their real will (García 2009). 47

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In order to better clarify these criteria, we can take the right to inclusive education as an example. Article 24 of the CRPD establishes the right to education as a right to inclusive and quality education. It is, therefore, the same right to education that has been recognised in previous texts of the international human rights system, such as Article 26 of the Universal Declaration of Human Rights and Articles 28 and 29 of the CRC. Recognition as inclusive underlines that the right to education can only be achieved if it is realised without discrimination and on the basis of equal opportunities in the general education system (Campoy 2017c). It is recognised that primary education has to be compulsory for all children (Article 28.1.a, CRC), and it is so because—among other reasons—it has been determined that at primary school ages, the child has no sufficient maturity to freely exercise this right and cannot fail to attend school in order to receive a proper education (Campoy 2007b). It is also determined that, if they do not receive inclusive education at this age, there is a considerable possibility that the attainment of the development of their personality to their fullest potential and due respect for human rights (Article 29.1.a and b, CRC) will be prevented or significantly hindered (Article 24.1.a and b, CRPD). Thus, compulsory primary inclusive education for children is justified (Article 24.2.a, CRPD), even if their expressed will was not to attend this inclusive education. Thus, the exercise of the right cannot be prevented by others, including parents (United Nations Committee on the Rights of Persons with Disabilities 2016, para. 10.a), on the grounds that this would be in the best interests of the child. What needs to be done is to make the necessary changes in the education system (United Nations Committee on the Rights of Persons with Disabilities 2016) and to provide each child with appropriate assistance to exercise their right on an equal basis (Article 24.2 CRPD). The application of these five conclusions to the construction of a suitable recognition and protection system for the rights of children would mean passing beyond the limits which we have seen renewed protectionism and the social model of disability confine them to and setting up a system in line with the human rights model. The most important consideration here is the child’s freedom, like that of any other person, and, consequently, the legally binding force of their will in the exercise of their rights. This new system means that children are holders of all rights and have legal capacity to exercise them on an equal basis with everyone else in society.

The Importance of the CRPD and the Corresponding Interpretation of the CRC for the Full Incorporation of the Rights of Children, With or Without Disabilities, Into the Human Rights Model Taking all the considerations and conclusions which I have previously presented means seriously understanding that it is necessary to develop a new system of recognition and protection for the rights of children, with or without disabilities, which is in keeping with the human rights model. It is possible to do so in accordance with the international human rights law now in force, although it was not designed for this purpose. 48

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Earlier, I explained how the CRPD represented a great advance for the rights of children with disabilities by explicitly establishing that they must fully enjoy all human rights on an equal basis with other children and that claiming disability as a reason for exclusion from holding or exercising rights should be understood to be prohibited. The references made to the CRC, both in Article 7—devoted to children with disabilities—and in Section (r) of the Preface oblige us to consider that children with disabilities are protected by the same recognition and protection system as other children. However, if we merely adhere to this reference made by the CRPD to the CRC, specifically to the key Articles 3.1 and 12, as these have been interpreted and applied, we would be assenting to the validity of renewed protectionism. Thus, we would be excluding children from the great potential which the CRPD has to offer for them. In fact, the construction of a system for the recognition and protection of the rights of children in keeping with the human rights model could be produced through a suitable interpretation of the CRC, which has gained strength from the evolution of the way the Committee on the Rights of the Child has come to interpret the CRC and, above all, with the adoption of the CRPD. A suitable interpretation of both Conventions allows us to understand that the states parties have an obligation to guarantee that children can effectively exercise all their rights, directly—with or without assistance—or through representatives (third parties qualified for this purpose), always guaranteeing, in the latter case, due assistance for the child, their participation, and taking the decision which best corresponds to what is considered to be their real will. On this point, Article 12.2 of the CRPD, which establishes that ‘States Parties shall recognise that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life’, is decisive. That is to say that the capacity to exercise their rights under the same conditions as everyone else belonging to all persons with disabilities, and thus also children with disabilities, is recognised. And the extension of this consideration to children with disabilities means it must also be extended to all other children, for the same reason aforementioned: because the CRPD makes it explicit that children with disabilities shall exercise their rights on an equal basis with all other children. Here a comment made by the presidency while the CRPD was being drafted, in the debate on whether a specific article of the CRPD should be devoted to children, is extremely illuminating. It states that if regarding children the CRPD is, as it should be, more demanding than the CRC, then the states which are parties to both Conventions will be bound by the more-demanding standards established by the CRPD (UN Convention on the Human Rights of People with Disabilities Ad Hoc Committee—Daily Summaries 02 August 2005). In any case, it is actually possible to demand a requirement of maturity for the free exercise of each right. In this respect, disability and age can be considered to establish a limit to the exercise of a right by a child, provided it can be directly linked to a lack of the maturity required for the exercise of that specific right. But then, one would have to guarantee due assistance for the child as well as their participation so that the 49

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decision which best corresponds to their real will is taken. Here, again, Article 12 of the CRPD is revealing; in the third and fourth paragraphs, it establishes: 3. States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity. 4 . . . safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person . . . are proportional and tailored to the person’s circumstances. . . . The safeguards shall be proportional to the degree to which such measures affect the person’s rights and interests. This is to say that, in accordance with Article 12 of the CRPD, a support model for decision-making, for the exercise of rights, must be established, through which the rights, the will, and the preferences of the person—and also, logically, the child— whose right is to be exercised must be respected. Consequently, the will substitution model must be withdrawn (De Asís et al. 2010) for all. This is how Article 7.3 of the CRPD should be interpreted (Campoy 2017b). It establishes that states parties must guarantee the right of disabled children, on an equal basis with everyone else, to express their opinion freely on all the questions affecting them ‘and to be provided with disability and age-appropriate assistance to realize that right’. Appropriate assistance is particularly important for the exercise of the right to participation, due to the transcendence which we have already seen that this right (and principle) has in the recognition and protection system for children’s rights; but it is obvious that such suitable assistance should not be limited to this right to participation but should be provided for the child whenever they need it, in the exercise of any right. This support model entails recognition of the legally binding force of the real will of the child, that is, their manifest will, where it is considered that they have sufficient maturity to exercise the right concerned, or the will which is considered would be theirs if they possessed at that time the maturity required. The model thus excludes the imposition of the will of anyone who might exercise the right for them (even though they could try to justify this by arguing that they are acting in order to protect the child’s best interests). The contrary would mean assuming that Article 12 of the CRPD establishes the support model instead of the will substitution model for all persons with disabilities, regardless of type or extent, but excludes (without justification) children from this concept of a person, permitting the will substitution model to continue in force only for the child. The will substitution model previously ran counter to a suitable recognition and protection system for children’s rights (Campoy 2006), but now it runs counter to international human rights law, as it openly contradicts the spirit of a regulation as important as the CRPD (García 2009). In this regard, it must be understood that the CRPD goes further than the social model of disability (and also renewed protectionism), aiming towards the human rights model (Coleridge, Simonnot and Steverlynck 2010), which must also be valid for children. For this reason, we cannot continue to think that the will substitution model could be valid for children. On the contrary, including children into the human rights 50

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model means recognising that their legal capacity is also guaranteed on an equal basis with other people in all aspects of life; consequently, a system which takes into consideration their real will for the proper exercise of their rights must be found for them too. Thus, in accordance with the human rights model, it will be necessary to adhere to the following two general considerations in order to guarantee this suitable system of protection for the exercise of rights by children, with or without disability: 1. The child, with or without disability, can exercise their rights freely (i.e. according to their manifest will). Any limitation to the exercise of their rights would have to be previously justified. 2. When it is considered that a child does not possess the sufficient maturity required to freely exercise a right—which could be connected to an age threshold or some degree of disability—one must always try to ensure that the exercise of the right corresponds as far as possible to whatever the child’s real will would be. This means that the child, with or without disability, must be guaranteed participation in the exercise of the right to the greatest possible extent and must be given all the support needed for the proper exercise of the right at all times. Their real will should never be replaced by that of whoever takes the final decision regarding the exercise of the right (not even with the traditional justification of acting to protect their best interests). This second consideration affects two possible situations: 1. When it is considered that the child cannot freely exercise the right in question but that they could do so after receiving the necessary support. In this case, the child must be able to access all these support measures and then be able to freely exercise their right. 2. When it is considered that the child cannot freely exercise the right concerned even if they receive the necessary support. In this case, the right in question will be exercised by a third party qualified to do so, after due participation by the child, after they have received the necessary support, and mainly, always trying to ensure that such exercise of the right corresponds with what, it would be reasonable to think, would in that case be the real will of the child, with or without disability, who holds the right.

Conclusion We are at a critical juncture for the rights of children, with or without disabilities. Although our international human rights law has definitively surpassed the traditional protectionism and the medical model, we cannot say that renewed protectionism and the social model entail the full incorporation of the children’s rights into the human rights model. Nevertheless, the latest interpretation of the CRC by the Committee on the Rights of the Child, together with an adequate interpretation of the CRPD, mainly Article 7, under the light of Article 12, permits us to incorporate the rights of children 51

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into the human rights model. We must guarantee that children can effectively exercise all their rights, directly—with or without assistance—or through representatives (third parties qualified for this purpose), always guaranteeing, in the latter case, due assistance to the child, their participation, and taking the decision that will be considered as their real will. Many children have an innate sense of what is ‘fair’ and ‘just’ and what it means to be treated with kindness and respect. They know how these concepts relate to their everyday lives. Whilst some children have the confidence and are enabled to voice their opinions when they feel they have been wronged, excluded, or treated disrespectfully, many others do not. Sadly, we are especially unlikely to hear from children whose human rights are violated and who face mistreatment, abuse, or neglect ‘behind closed doors’. It is, of course, adults who have the responsibility to end these human rights violations, protect children, and ensure their flourishing. It is adults who need to create the systems and processes that support children to be able to voice their concerns and grievances. It is adults who must act as children’s advocates, especially in courts of law. Nevertheless, it is essential that we find ways to help children to know their rights and know how to seek help if they feel at risk, or that their rights are not being respected. Various efforts have been made in this regard: UNICEF has produced a child-friendly version of the UN CRC: https://www. unicef.org/sop/convention-rights-child-child-friendly-version And of the UN CRPD: https://wwda.org.au/wp-content/uploads/2020/06/ childcrpd.pdf They have also established a ‘Rights Respecting Schools’ initiative: https://www. unicef.org.uk/rights-respecting-schools/ Amnesty International has a resource for pre-schools/schools that helps teachers know how to introduce human rights to 3–5 year old children: https://bit.ly/3zPqcpF There are other examples. But what is needed is for people to take up these resources and utilise them with children, especially those who are most vulnerable. There also need to be mechanisms in place, about which as many children as possible are aware, to alert people when they feel their rights are not being respected. Developing mechanisms that are appropriate and effective, responsive to local contexts is vital.

Note 1 This chapter originates from a first Spanish version: Campoy Cervera (2017a).

References Alston, P. and Gilmour-Walsh, B. 1996. The best interests of the child: Towards a synthesis of children’s rights and cultural values. Florence: UNICEF. Archard, D. 2015. Children. Rights and childhood. 3rd edition. London: Routledge.

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Incorporating Children’s Rights Into the Human Rights Model Campoy Cervera, I. 2004. Una revisión de la idea de dignidad humana y de los valores de libertad, igualdad y solidaridad en relación con la fundamentación de los derechos [A review of the idea of human dignity and the values of freedom, equality and solidarity in relation to the foundation of rights]. Anuario de Filosofía del Derecho XXI, pp. 143–166. Campoy Cervera, I. 2006. La fundamentación de los derechos de los niños. Modelos de reconocimiento y protección [The foundation of children’s rights. Models of recognition and protection]. Madrid: Dykinson. Campoy Cervera, I. 2007a. La discapacidad y su tratamiento conforme a la Constitución española de 1978 [Disability and its addressed in the Spanish Constitution of 1978]. In I. Campoy Cervera and A. Palacios (eds.), Igualdad, no discriminación y discapacidad. Una visión integradora de las realidades española y argentina. Madrid: Dykinson. Campoy Cervera, I. 2007b. La educación de los niños en el discurso de los derechos humanos [Children’s education in human rights discourse], In I. Campoy Cervera (ed.), Los derechos de los niños: perspectivas sociales, políticas, jurídicas y filosóficas. Madrid: Dykinson. Campoy Cervera, I. 2013. Estudio sobre la situación de los niños y las niñas con discapacidad en España [Study on the situation of children with disabilities in Spain]. Madrid: UNICEF Comité Español-Huygens Editorial. Campoy Cervera, I. 2017a. La construcción de un modelo de derechos humanos para los niños, con o sin discapacidad [The Construction of a Human Rights Model for Children, With or Without Disabilities]. Derechos y Libertades 37, pp. 131–165. Campoy Cervera, I. 2017b. Legal analysis of article 7 of the convention on the rights of persons with disabilities: Children with disabilities. The Age of Human Rights Journal 9, pp. 116–141. Campoy Cervera, I. 2017c. Sobre el derecho a una educación inclusiva de calidad [On the right to inclusive quality education], In Derechos de las personas con discapacidad. Buenos Aires: Defensoría General de la Nación-Secretaría General de Capacitación y JurisprudenciaMinisterio Público de la Defensa. Campoy Cervera, I. 2022. Una propuesta de concepto y fundamento de los derechos humanos [A proposal of a concept and foundation of human rights]. Derechos y Libertades 47, pp. 149–182. Camps, V. 1989. Paternalismo y bien común [Paternalism and the common good]. Doxa. Cuadernos de Filosofía del Derecho 5, pp. 195–202. Coady, C. A. J. 1995. Theory, rights and children: A comment on O’Neill and Campbell. In: P. Alston, S. Parker and J. Seymour (eds.), Children, rights and the law. Oxford: Clarendon Press. Cohen, H. 1980. Equal rights for children. Totowa, NJ: Littlefield, Adams & Co. Coleridge, P., Simonnot, C. and Steverlynck, D. 2010. Study of disability in EC development cooperation, framework contract commission 2007 Lot no. 4, Contract No. 2009/223185, Final report Draft. Convention on the Rights of Persons with Disabilities. 2008. [Online] [Accessed on 14 February 2021] Available from: https://treaties.un.org/doc/publication/UNTS/Volume%20 2515/v2515.pdf Convention on the Rights of the Child. 1990. [Online] [Accessed on 14 February 2021] Available from: https://treaties.un.org/doc/Publication/UNTS/Volume%201577/v1577.pdf De Asís Roig, R. 2001. Sobre el concepto y el fundamento de los derechos. Una aproximación dualista [On the concept and foundation of rights. A dualist approach]. Madrid: Dykinson. De Asís Roig, R. 2004. La incursión de la discapacidad en la teoría de los derechos: posibilidad, educación, Derecho y poder [The entrance of disability into rights theory: possibility, education, law and power.]. In I. Campoy Cervera (ed.), Los derechos de las personas con discapacidad: perspectivas sociales, políticas, jurídicas y filosóficas, Madrid: Dykinson. De Asís Roig, R., Barranco Avilés, M. C., Cuenca Gómez, P. and Palacios Rizzo, A. 2010. Algunas reflexiones generales sobre el impacto de la Convención Internacional de los Derechos de las Personas con Discapacidad en el Derecho Español [Some general reflections on the impact of the International Convention on the Rights of Persons with Disabilities on Spanish Law]. In P. Cuenca Gómez (ed.), Estudios sobre el impacto de la Convención

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Ignacio Campoy Cervera Internacional sobre los Derechos de las Personas con Discapacidad en el Ordenamiento jurídico español. Madrid: Dykinson. Detrick, S. ed. 1992. The United Nations Convention on the Rights of the Child. A guide to the “Travaux Préparatoires”. The Hague: Martinus Nijhoff Publishers. Dworkin, G. 1988. The theory and practice of autonomy. Cambridge: Cambridge University Press. Eekelaar, J. 1994. The interests of the child and the child’s wishes: The role of dynamic selfdeterminism. In P. Alston (ed.), The best interests of the child. Reconciling culture and human rights. Oxford: Oxford University Press. Eekelaar, J. 1995. The importance of thinking that children have rights. In P. Alston, S. Parker and J. Seymour (eds.), Children, rights and the law. Oxford: Clarendon Press. Farson, R. 1974. Birthrights. New York/London: Macmillan Publishing Co., Inc./Collier Macmillan Publishers. Foster Jr., H. H. and Freed, D. J. 1972. A bill of rights for children. Family Law Quarterly 6(4), pp. 343–375. Freeman, M. D. A. 1995. Taking children’s rights more seriously. In P. Alston, S. Parker and J. Seymour (eds.), Children, rights and the law. Oxford: Clarendon Press. García Pons, A. 2009. Algunas consideraciones a propósito del vigésimo aniversario de la Convención Internacional de los Derechos del Niño, y su relación con la Convención Internacional sobre los Derechos de las Personas con Discapacidad. Consecuencias en la actuación notarial [Some considerations on the 20th anniversary of the International Convention on the Rights of the Child, and its relation to the International Convention on the Rights of Persons with Disabilities. Consequences for the notary’s work]. Revista Jurídica del Notariado 72, pp. 185–198. Garzón Valdés, E. 1989. ¿Es éticamente justificable el paternalismo jurídico? [Is legal paternalism ethically justifiable?] Doxa. Cuadernos de Filosofía del Derecho 5, pp. 155–173. Gross, B. and Gross, R. eds. 1977. The children’s rights movement. New York: Anchor Press/ Doubleday. Hierro Sánchez-Pescador, L. L. 1994. La intimidad de los niños: un test para el derecho a la intimidad [Children’s privacy: A test of the right to privacy]. In J. M. Sauca (ed.), Problemas actuales de los derechos fundamentales. Madrid: Universidad Carlos III de Madrid-Boletín Oficial del Estado. Hierro Sánchez-Pescador, L. L. 2007. El niño y los derechos humanos [The child and human rights]. In I. Campoy Cervera (ed.), Los derechos de los niños: perspectivas sociales, políticas, jurídicas y filosóficas. Madrid: Dykinson. Holt, J. 1974. Escape from childhood. New York: E. P. Dutton & Co., Inc. Lawson, A. and Beckett, A. E. 2021. The social and human rights models of disability: towards a complementarity thesis. The International Journal of Human Rights 25(2), pp. 348–379. Nino, C. S. 1989. Ética y derechos humanos. Un ensayo de fundamentación [Ethics and human rights. An essay of foundation]. Barcelona: Ariel. Oficina del Alto Comisionado para los Derechos Humanos. 1998. Los derechos del niño: creación de una cultura de los derechos humanos [Children’s rights: creation of a culture of human rights]. Todos los derechos humanos para todos. Cincuentenario de la Declaración Universal de Derechos Humanos 1948–1998. Carpeta de información básica No. 3. Nueva York, Ginebra: Naciones Unidas. Palacios, A. 2008. El modelo social de discapacidad: orígenes, caracterización y plasmación en la Convención Internacional sobre los Derechos de las Personas con Discapacidad [The social model of disability: Origins, characterisation and translation into the international convention on the rights of persons with disabilities]. Madrid: CERMI.es. Peces-Barba Martínez, G., with the cooperation of De Asís, R., Fernández Liesa, C. and Llamas, A. 1999. Curso de derechos fundamentales. Teoría General [Course on fundamental rights. General theory]. Madrid: Boletín Oficial del Estado-Universidad Carlos III. Rodham, H. 1974. Children under law. Harvard Educational Review 9, pp. 1–28.

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Incorporating Children’s Rights Into the Human Rights Model Seymour, J. 1995. An ‘uncontrollable’ child: A case study in children’s and parent’s rights. In P. Alston, S. Parker and J. Seymour (eds.), Children, rights and the law. Oxford: Clarendon Press. Shakespeare, T. 2008. La autoorganización de las personas con discapacidad: ¿Un nuevo movimiento social? [Disabled People’s Self-organisation: a new social movement?] In L. Barton (comp.), Superar las barreras de la discapacidad. 18 años de Disability and Society. Madrid: Ediciones Morata. UN Convention on the Human Rights of People with Disabilities Ad Hoc Committee— Daily Summaries. 2005. Daily summary of discussion at the sixth session, 7 [Online] [Accessed on 24 December 2022] Available from: https://www.un.org/esa/socdev/enable/rights/ ahc6sum4aug.htm United Nations Committee on the Rights of Persons with Disabilities. 2016. General comment no. 4. On the right to inclusive education. CRPD/C/GC/4. [Online] 25 November [Accessed on 10 December 2021] Available from: https://tbinternet.ohchr.org/_layouts/15/ treatybodyexternal/Download.aspx?symbolno=CRPD%2fC%2fGC%2f4&Lang=en United Nations Committee on the Rights of the Child (UNCRC). 2009. General Comment no. 12. The right of the child to be heard. CRC/C/GC/12. [Online] 1 July [Accessed on 14 February 2021] Available from: https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download.aspx?symbolno=CRC%2fC%2fGC%2f12&Lang=en United Nations Committee on the Rights of the Child (UNCRC). 2013. General Comment No. 14: On the right of the child to have his or her best interests taken as a primary consideration (art. 3, para. 1) (29 May 2013). [Online] CRC/C/GC/14. [Accessed on 14 February 2021] Available from: https://www2.ohchr.org/English/bodies/crc/docs/GC/ CRC_C_GC_14_ENG.pdf Worsfold, V. L. 1974. A Philosophical Justification For Children’s Rights. Harvard Educational Review 9, pp. 29–44. Youth Liberation of Ann Arbor. 1977a. We do not recognize their right to control us. In B. Gross and R. Gross (eds.), The children’s rights movement. New York: Anchor Press/ Doubleday. Youth Liberation of Ann Arbor. 1977b. Youth liberation program. In B. Gross and R. Gross (eds.), The children’s rights movement. New York: Anchor Press/Doubleday.

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4 AN ANALYSIS OF THE UNCRPD CONCLUDING OBSERVATIONS ON THE RIGHTS OF CHILDREN WITH DISABILITIES Bronagh Byrne Introduction Once invisible in international human rights law, both on the grounds of age and disability, children with disabilities were finally explicitly acknowledged as rights-holders, along with their non-disabled peers, with the adoption of the United Nations Convention on the Rights of the Child (1989) (CRC). This was in stark contrast to the continuing invisibility of disabled adults in international human rights law— theoretically protected but practically absent. Nonetheless, far from being the magic solution to the human rights violations that children with disabilities have long experienced, the CRC and its monitoring Committee have, until relatively recently, reaffirmed the traditional individualised and deficit-based paradigm that has underpinned practices of stigmatisation, institutionalisation, and discrimination for children with disabilities (Bantekas 2018; Byrne 2012; Byrne 2019; Sabatello and Layden 2020). The development and adoption of the UN Convention on the Rights of Persons with Disabilities (2006) (CRPD) almost 20 years later has disrupted these deeply embedded ideologies, and there is growing evidence that the Committee on the Rights of the Child (the CRC Committee) has sought to align its core messaging on disability to that of the CRPD. This chapter uses the term ‘children with disabilities’ in alignment with its usage under the CRPD. The CRPD has been rightly lauded, for many reasons. Significantly, it was developed by disabled people themselves, including children (Sabatello and Layden 2020), and formally recognises the interaction between individual impairment and environmental and structural barriers. For the first time in an international human rights treaty, both children and adults with disabilities are clearly recognised as rights-holders in tandem. There are, however, broader debates that the CRPD brings to the fore. 56

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This is the extent to which the CRPD and its monitoring Committee meaningfully address the intersection of age and disability or whether children with disabilities continue to fall between two stools—one human rights treaty that predominantly focuses on age (the CRC) and one human rights treaty that predominantly focuses on disability (the CRPD). The present chapter takes the intersectionality of disability and age as its point of departure. It examines the extent to which the CRPD Committee has consistently engaged with the lived experiences of children with disabilities across its Concluding Observations since its inception. Using Article 7 of the CRPD as the primary normative framework for the rights of children with disabilities and drawing on a content and critical policy analysis of Concluding Observations on the 93 countries that have been examined by the CRPD Committee to date, this chapter explores the emergent foci of the rights of children with disabilities at the international level and their implications for discourse and practice. In so doing, it identifies thematic areas where children with disabilities have been highlighted in the examination of states parties’ reports, as well as the extent to which commentary has engaged with the multiple identity categories that children with disabilities occupy and challenged homogenous notions of both disability and age. Such an approach to policy analysis must, however, be approached with some caution. State party reports and Concluding Observations are essentially social products and inherently political. They cannot, therefore, be regarded as impartial or a factual account of what is happening on the ground (Byrne 2022). This in itself, however, generates critical insight into the ways in which normative human rights frameworks operate in specific contexts and the ways in which taken-for-granted or common beliefs and ideologies relating to the rights of children with disabilities are reproduced or challenged.

The CRPD and Children with Disabilities The CRPD combines a mainstreaming approach to the rights of children with disabilities, with numerous references to children throughout, alongside a specific article addressing issues not stated elsewhere (Byrne 2012). The key provisions relating to children are contained within Articles 3 (General Principles) and 7 (Children with Disabilities). Article 3(h) requires ‘respect for the evolving capacities of children with disabilities’ and ‘respect for the right of children with disabilities to preserve their identities’. Article 7 of the CRPD largely affirms those rights contained in the CRC by requiring states to take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children (Article 7(1)), ensure that the child’s best interests are a primary consideration (Article 7(2)), and accord children with disabilities the right to express their views freely on all matters affecting them and to be provided with disability and age-appropriate assistance to realise that right (Article 7(3)). The right to inclusive education for children with disabilities is of obvious significance (Article 24). The emphasis of Articles 7 and 24 is on the rights of children with disabilities comparable to children without disabilities, whereas references throughout the remainder of the 57

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CRPD focus primarily on the rights of children with disabilities alongside adults with disabilities. Further references are made to children with disabilities and/or age in Articles 4, 8, 13, 16, 18, 23, 25, and 30. This combined mainstreaming or ‘twin track’ (de Beco 2020) approach is intended to ensure that the rights of children with disabilities is considered holistically as far as possible. In its reporting guidelines for states parties, the CRPD Committee (2009) has outlined that the state party report should include the following: [S]upplementary information where applicable, regarding measures taken by the State Party to ensure the full enjoyment by children with disabilities of all Convention rights and fundamental freedoms, in particular to ensure that all actions concerning children with disabilities are in the best interests of the child. States parties should report on: 1. The principles that underpin decision-making in relation to boys and girls with disabilities. 2. Whether boys and girls with disabilities are able to express their views on all matters that affect them freely, and receive appropriate assistance according to their disability and age to practise this right. 3. Relevant differences in the situations among boys and girls with disabilities. 4. Whether children with disabilities are viewed as right-bearers on an equivalent basis to other children. This chapter unpacks the CRPD Committee’s responses to states parties reporting under Article 7. Sabatello and Layden (2020, p. 601) note that although implementation of the CRPD and the CRC is key in upholding the rights of children with disabilities, successful implementation can occur ‘only when political will—and commitment—are present’. While this quotation refers to the will and commitment of states parties in implementing rights, this chapter asserts that the CRPD Committee has an important role to play in actively demonstrating and legitimating commitment to the rights of children with disabilities by monitoring implementation of Article 7 and related rights in a consistent and substantive matter. This has to go beyond mere mention or passing reference to children with disabilities at appropriate points in examination of state party reports, given that Concluding Observations are the primary means of enforcement of human rights treaties. For a treaty to include some substantive right in its text is but a starting point. These must be followed through with effective practice. As Beitz (2009, p. 46) asserts, ‘rights are not supposed to be pointless; they are supposed to yield reasons for action.’ This is even more important given that human rights represent a set of normative requirements with which not all duty-bearers might agree or interpret progressively. Article 7 of the CRPD and how it is monitored has the capacity to ‘persuade’ or ‘acculturate’ states parties to ‘perform better’ (Goodman and Jinks 2004, p. 102) in relation to promoting and protecting the 58

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rights of children with disabilities and in inducing vertical internalisation of norms (Byrne 2013). Criticism of the CRC Committee’s early approach to disability and the limited progress made across states parties (Campoy 2017, Kilkelly 2002) is indicative of the power of interpretation, misinterpretation, or minimal interpretation and the role of treaty bodies in challenging this state of affairs. Indeed, if the human rights treaty system generally, and Article 7 of the CRPD specifically, is to ‘avoid the charge of being no more than an ad hoc collection of values, we must have some coherent conception of the type of objects to which it refers’ (Beitz 2009 p. 45). Beyond what is contained in the treaty text and in the absence of a specific CRPD General Comment on children with disabilities at the time of writing, it is through Concluding Observations that we can assess the extent of this ‘coherent conception’.

Using Critical Policy Analysis Critical policy analysis is a key tool for questioning structures and systems (Diem et al. 2014). This chapter replicates an approach to critical policy analysis of CRPD Concluding Observations developed and reported elsewhere in the specific context of Article 24 of the CRPD on the right to inclusive education (for a fuller discussion, see Byrne 2022). Concluding Observations on Article 7 of the CRPD can be understood as one means by which the CRPD Committee seeks to influence culture and practices of states parties with respect to children with disabilities globally. This is achieved through its identification of key areas of concern and subsequent recommendations. As noted by Diem et al. 2014, critical policy analysis allows us to uncover the ‘white spaces’, that is, what is not there that should be there and the extent to which the voices of those not traditionally heard in policy processes are being represented in policy texts. It can also help us identify common patterns across states parties in terms of the most pressing issues of the time and the most significant barriers to implementation of children with disabilities’ rights. Nonetheless, it is important to note that both state party reports and subsequent Concluding Observations are designed for a particular purpose and for a particular audience and cannot be regarded as an entirely factual account of what is happening at national level. Similarly, the Committee itself is time bound and only able to examine what states parties choose to present to them and then in a very short space of time, making it impossible to highlight everything of concern. That the CRPD Committee is made up of a majority of people with disabilities (Kayess and French 2008) could be said to enhance legitimacy of its observations and commentary, given its composition as a body both of and for people with disabilities. However, we must remember that while Committee members may be able to draw on lived experiences to speak to the CRPD’s provisions, they can only ever do so through an adult lens. In addition, they cannot represent all lived experiences of all disabled people. What this means for the intersectionality of disability and age must be considered. For the purposes of this chapter, a content analysis was undertaken of all Concluding Observations produced by the Committee to date, from its first examination in 2011, 59

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to the end of 2020. In total, 93 sets of Concluding Observations were produced during this period. All state party reports and Concluding Observations sent to and produced by the Committee are archived on the Committee’s webpages on the Office of the High Commissioner for Human Rights website (OHCHR 2022). This can be searched by country or Committee session, making for a straightforward search. No search terms were required, since all Concluding Observations to date were utilised. Once all documents were downloaded, the Committee’s commentary on Article 7 was collated into a new word document, identifiable by country and year. As all documents are publicly accessible, there were no ethical issues to be considered. Once the data gathering was completed, data was analysed using a thematic inductive analytical strategy. Following familiarisation with the data, the data was coded in accordance with the key themes that emerged. The following sections set out the emergent themes from that analysis.

Major Themes From Concluding Observations Commentary on Article 7 Has Been Broad in Scope Analysis suggests that the CRPD Committee’s Concluding Observations do not always mirror the state party reporting guidelines discussed earlier. The CRPD Committee has not restricted itself solely to commenting on issues set out in its reporting guidelines for Article 7, nor has it always directly commented on each or any of the issues set out there at all but has taken a rather-broad ‘catch-all’ approach. It is interesting to note that, in spite of the twin track approach that is taken in the treaty text, there is comparatively limited discussion of children with disabilities outside Article 7 and Article 24. Topics we may have expected to be considered elsewhere—such as Article 16 on the right to be free from all forms of exploitation, violence, and abuse, or Article 23 on the right to respect for family life and importance of measures to prevent concealment, abandonment, neglect, and segregation of children with disabilities—are in fact situated under Article 7 commentary. This could be, in part, due to a decision by states parties to initially report on children with disabilities under Article 7 and/or an assumption that Article 7 is the natural home of considerations relating to children with disabilities, demonstrating challenges of mainstreaming in practice. While the delineation of precisely under which articles children with disabilities are discussed may appear in part to be semantics, it plays an important role in either reasserting or undermining what is meant to be a twin track approach in practice. This will be explored further later in the chapter. It is interesting to note that, in the rather-early days of the CRPD Committee’s Concluding Observations, explicit reference was made to the CRC Committee in five cases. For example, the CRPD Committee has called on Hungary (2012, para. 22) to promote and expand community-based rehabilitation and other services in their respective local communities to children with disabilities and their families, in order to enable children with disabilities to live with their families, as recommended by the Committee on the Rights of the Child [emphasis added]. 60

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Similar feedback was provided to Paraguay (2012), while in responding to Austria (2013), Azerbaijan (2014), and Mongolia (2015), the Committee explicitly endorsed previously made recommendations of the CRC Committee, which called on the respective states parties to implement these as quickly as possible.1

The Best Interests Principle as a Minimal Principle Rather Than a General Principle Article 7(2) requires the best interests of the child to be the primary consideration in all actions concerning the child. This has been identified as a general principle under the CRC by the CRC Committee (1991), although, interestingly, it does not appear in the list of general principles under the CRPD. The CRPD Committee has made explicit references to the best interests’ principle in only 13 of the 93 sets of Concluding Observations that were examined (14%). This would seem odd given that it is a central provision of Article 7 (and a general principle under the CRC). The concept of best interests is undoubtedly complex (Eekelaar 1994; Sutherland 2016). However, it could be said to encompass the adoption of a range of policies, facilities, programmes, and practices directed at children with disabilities to satisfy the obligation. In this vein, meeting the best interests of the child is invariably broad. Bantekas (2018) emphasises that the best interest provision should be viewed as having both a personalised and a general dimension in the context of children with disabilities. The CRPD Committee’s concerns around Article 7(2) have centred on the absence or lack of strategies to promote the best interests of the child, for example, in respect of Cuba (2019), Philippines (2018), and Iran (2016). It has emphasised the need to give effect to best interests both generally and in specific contexts. For example, in respect of Norway (2019, para. 12), the Committee has recommended that the state party incorporate the principle of the best interests of the child ‘in all legislation, and judicial and administrative decision-making procedures affecting children’, while in responding to Oman (2018, para. 16), it calls on the state to ‘ensure that all children with disabilities enjoy their rights under the Convention and in line with the best interest of the child principle, both de jure and de facto’. Elsewhere, reference to the best interest principle has been in specific contexts, such as legal proceedings (El Salvador 2016) and in the provision of support to help young people with disabilities start an independent life into adulthood (Kuwait 2019). In a nod to the complexity of the best interest provision and challenges in implementing it effectively, the CRPD Committee has expressed concern at the lack of specific criteria for applying the best interests of the child in all actions concerning children with disabilities in respect of Canada (2013). To this end, it has recommended that Canada [i]ntroduce guidelines among all levels of administration on how to implement the principle of the best interests of the child in the design, implementation and monitoring of legislation and policies concerning children with disabilities. (para. 18) 61

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The Right of Children With Disabilities to Have Their Views Heard and Given Due Weight Is Gaining Momentum As might be expected, given the focus of the reporting guidelines, much more attention has been paid to the right of children with disabilities to have their views heard and given due weight under Article 7(3) of the CRPD compared to the best interest principle. In saying that, issues relating to Article 7(3) were raised in less than two-thirds of the Concluding Observations (57 out of 93 sets of Concluding Observations; 61%). Concern from the CRPD Committee has centred on the lack of opportunities and means that children with disabilities have to express their views (for example, Rwanda 2019; Sweden 2014), and that any involvement that does take place is far from systematic (Luxembourg 2017). The Committee has noted both the lack of measures and the lack of information on measures in place to support children with disabilities in expressing their views generally (Cuba 2019; Iraq 2019; Spain; 2019), and also in specific areas such as in legal or care and protection processes (India 2019; Saudi Arabia 2019). Interestingly, in some cases, such as Australia (2013) and Spain (2011), the Committee has specified the need to establish policies and programmes to ensure that children with disabilities are able to express their views. This is one of the more specific recommendations it has made suggesting that children’s views are important in informing policies and programmes, but policies and programmes also need to be established to facilitate children to express their views in more systematic ways. The majority of the CRPD Committee’s commentary on Article 7(3) has focused on children with disabilities in general. There are two instances, however, whereby the Committee has been impairment specific in this regard. In respect of Lithuania (2016), the Committee has noted: The systematic lack of involvement of children with disabilities, especially children with intellectual or cognitive impairments and children with a reduced ability to express themselves vocally, in decision-making concerning their lives. (para. 17) This is especially important since participation initiatives have tended to engage those children with disabilities who are relatively easy to communicate with and who are perceived to be proficient in the spoken language (Callus and Farrugia 2016). Similarly, the lack of information on deaf and deaf-blind children was highlighted in the Committee’s examination of Uganda (2016), where it called on the state to adopt measures to include ‘deaf and deaf-blind girls and boys in all public policies and programmes to ensure that their opinions and views are taken into consideration’. The importance placed on children with disabilities expressing their views extends to national processes. For example, the Committee has expressed concern at the lack of effective representation of children with disabilities and opportunity for them to express their views in national discourse in Senegal (2019), particularly in the Children’s Parliament in that country. It has made similar comments in respect of Morocco (2017) and has called on the state to include children with disabilities in the national forum of 62

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children, the children’s parliament, and children’s governorate and municipal councils, on an equal basis with other children. In the context of Malta (2018), the recommendation for the state to adopt measures to fulfil the right of children with disabilities to be consulted on all matters that affect them, and to guarantee that they have disability- and age-appropriate support, explicitly extends to measures taken by the Commissioner for Children. The identified areas of concern and related recommendations highlighted in this section clearly arise out of Article 7(3) obligations. However, the explicit discussion of specific impairment groups and contexts has the ability to raise awareness among states of issues they may not otherwise have considered and of areas where some groups of children with disabilities may be more likely to be discriminated compared to others. The concept of evolving capacities is included as a general principle in Article 3 of the CRPD. As such, it is intended to guide the interpretation of all CRPD rights. The explicit inclusion of this concept and its prime location therein is of great significance for a group of children who have often been perceived to be incapable of demonstrating any meaningful capacity or competence (Byrne 2012). It is interesting to note that this principle has been applied by the CRPD Committee across eight of its Concluding Observations. This has generally been in the context of according due weight to the views of children with disabilities. In the context of Iran (2016, para. 17), the importance of evolving capacities was acknowledged to the extent that the Committee called on the state to [a]dopt a strategy to sensitize families and communities about the respect of the evolving capacities of children with disabilities, combat stereotypes against them and prevent isolation and neglect. Moreover, the Committee called on Canada (2016, para. 18) to prioritise recognition of the [i]dentity and evolving capacities of deaf children, deaf-blind children and hard-of-hearing children and their different requirements, autistic children and children with psychosocial and/or intellectual disabilities. This is a critical nod to the perceived need to raise awareness of the evolving capacities of children with disabilities among families and the community. However, its response to Canada is also recognition of the ways in which some groups of children with disabilities may be more likely to experience discrimination, not simply through the intersection of disability and age, but the intersection of specific impairment and age.

Institutionalisation Is the Most Pressing Global Issue Impacting Children With Disabilities Across the Concluding Observations on Article 7, the CRPD Committee has commented on a range of substantive issues beyond best interests and the right to express views and have these given due weight. Engagement with identified substantive issues provides insight into the most pressing issues impacting children with disabilities 63

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across states parties at a particular point in time. Analysis suggests that the most significant substantive issue identified by the CRPD Committee relates to the institutionalisation of children with disabilities. This was highlighted in 45 of the 93 sets of Concluding Observations under Article 7 (48%) in spite of the CRPD Reporting Guidelines (2009) stipulating that states parties should report on issues relating to institutionalisation under Article 23 of the CRPD rather than Article 7 of the CRPD. While the majority of comments are related to concerns around the institutionalisation of children with disabilities generally, they also allow us to gain insight into the nuances of institutionalisation. For example, the CRPD Committee has criticised the maintenance of funding streams around various forms of institutionalisation, such as ‘referral’ or residential ‘centres’, ‘shelters’, and ‘special service’ centres, and has called for budgets to instead be channelled into the creation of social inclusion programmes, community services, and support networks (for example, Ecuador 2014, El Salvador 2013). With respect to Armenia (2016), it highlighted instances of institutionalisation that had been labelled by the state party as deinstitutionalisation: The Committee is concerned by . . . reports on the institutionalization of a high number of children with disabilities in orphanages and residential special schools, including their transinstitutionalization from one institution to another under the guise of deinstitutionalization, and the continuing investment in such institutions. (para. 11) This comment is significant in highlighting the subtle forms of institutionalisation that can persist and which have the potential to become reconstituted in new ways. Elsewhere, concern has been expressed at the protracted nature of the deinstitutionalisation of children with disabilities (Greece 2019), and calls have been made for states to take immediate measures to end institutionalisation by, inter alia, developing a clear strategy for a moratorium on new admissions to institutions (Croatia 2015) and developing and implementing a strategy to promote safe and supported family settings in the community, with specific time frames and adequate allocated budget (Spain 2019). In respect of Poland (2018), the CRPD Committee has critiqued both the institutionalisation of children with disabilities and the fact that this has been alongside adults. The segregation of children with disabilities from their families and community can also mean segregation and exclusion from their home country. In the case of Luxembourg (2017), the Committee expressed concern that some children with disabilities, particularly those with high support requirements, may sometimes live in residential institutions abroad. In some instances, institutionalisation has been linked to the exploitation and abuse of children with disabilities, in part due to poor conditions and in part for much more disturbing reasons. For example, in its examination of Ukraine (2015), the Committee highlighted widespread institutionalization of children with disabilities throughout the country. It is particularly concerned about the reports of sexual abuse and 64

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exploitation of children with disabilities in institutions and their trafficking abroad. It is also concerned about the poor conditions in care institutions for such children, including lack of rehabilitation programmes and lack of privacy, and is particularly alarmed about the reports of deaths of children with disabilities in institutions due to malnutrition related illnesses. (para. 13)

Article 7 as a Lens Through Which to Examine Child-Specific Experiences of Exploitation, Violence, and Abuse Commentary on child-specific issues relating to Article 16 of the CRPD was raised across 24 sets of Concluding Observations (26%). Discussion around violence and abuse has been linked to wider factors, such as abandonment, neglect, and stigmatisation. In this vein, Article 7 would appear to be a useful space for the CRPD Committee to consider children with disabilities’ experiences of their rights in a holistic way and in a way that acknowledges the interdependency of their rights in child-specific ways. For example, in relation to South Africa (2018), the Committee has pointed out [t]he high number of reported cases of corporal punishment, violence, abuse, neglect and inequality involving children with disabilities, especially autistic children and children with psychosocial and/or intellectual disabilities, by teachers and peers. (para. 12) We can also see how the particular experiences of some groups of children with disabilities are being drawn out as being at particular risk here, a nod to a more nuanced approach to intersectionality and the fact that children with disabilities are not a homogeneous grouping. Violence and abuse are understood as impacting on children with disabilities across a range of settings, including in the home, in schools, in institutions, and in alternative and day care settings (Bosnia and Herzegovina 2016; Morocco 2017; Oman 2018). Corporal punishment has been noted as impacting children with disabilities across 18 sets of Concluding Observations, and the Committee has been proactive in calling for its abolishment (for example, Bosnia and Herzegovina 2016; Guatemala 2016; South Africa 2018; Sudan 2018) in alignment with the CRC Committee. More broadly, the Committee has critiqued the lack of legislation to protect children with disabilities from ill-treatment, abuse, and exploitation (Ethiopia 2017; Panama 2017). The concern with violence has been such that it called on Jordan (2016) to intensify punishments for acts of negligence or harm towards children with disabilities and to [e]nsure that all cases in which children with disabilities are exposed to violence are reported and fully investigated, that perpetrators are prosecuted 65

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and appropriately punished and that victims are provided with adequate support and redress, including compensation and rehabilitation. (para. 18)

National Policies and Strategies Targeting or Including the Rights of Children With Disabilities Are Lacking National policies and strategies which refer to children with disabilities may take one of two forms. Firstly, policies and strategies may exist that specifically target children with disabilities alone, or secondly, they may include children with disabilities as part of a more general children’s policy or strategy. The extent to which policies and strategies are in place and reflect the needs and rights of children with disabilities has featured across 32 sets of Concluding Observations (34%). In a rare acknowledgement, the Committee has noted the recent work undertaken as part of the Disability Action Plan 2014–2018 in New Zealand (2014) to make services more accessible. Elsewhere, the approach has been more critical, with frustration at the absence of children with disabilities from existing policies and strategies for children (for example, Portugal 2016; European Union 2015). It has been critical of instances where policy frameworks focus solely on protection against violence, abuse, and neglect, with no equivalent framework for children, including children with disabilities, that articulates how their rights should be implemented, monitored, and promoted. This was highlighted as a gap in the instance of Australia (2013). In response to these shortcomings, the Committee has called for the CRPD to be incorporated into legislation, policies, programmes, service standards, operational procedures, and compliance frameworks. The Committee has been especially critical where child-specific policies have reflected a medical or deficit-based approach to disability rather than a holistic social model or rights-based model, such as in its examination of Paraguay (2013) when it commented that [t]he National Programme of Comprehensive Care for Children and Adolescents with Disabilities is limited solely to the prevention and early detection of disability characteristic of the medical model, and does not take account of the full range of rights recognized to children with disabilities. (para. 19) Attempts to challenge dominant state ideologies underpinning conceptualisations of disability have extended beyond immediate policy measures to include fundraising campaigns. For example, it has called on Latvia (2017) to ‘prevent and sanction any public campaigns that promote a charity and “cure” approach to children with disabilities’ (own emphasis, para. 13). The failure to incorporate a human rights model of disability in public policies and legislation (Lawson and Beckett 2021) concerning children with disabilities has also been a source of contention for the Committee in its examination of the United Kingdom (2017). The obvious connection between the disability rights discourse that has its roots in the disability movement of the 66

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1960s and 1970s (Union of Physically Impaired against Segregation/Disability Alliance 1976) and the CRPD is hugely welcome, given the dominance of deficit-based approaches characterised by diagnosis, categorisation, and labelling in children with disabilities’ lives. It is, however, not yet a common theme in the CRPD Committee’s response. Research by the World Health Organisation (2011) suggests that children with disabilities are more likely to be in poverty compared to children without disabilities. Inadequate responses to this have been highlighted by the CRPD Committee, for example, in relation to Italy (2016) and the UK (2017). In addition to calling on Italy to develop stronger monitoring mechanisms, the Committee has recommended that policies aimed at addressing child poverty specifically include children with disabilities through their representative organisations. Reference has also been made to the wider policy context where appropriate. For example, in respect of the EU (2015) (in this context as a regional integration organisation with shared responsibility for implementation with EU member states) and Portugal (2016), the Committee has expressed concern at the negative impact of austerity measures taken by each state party respectively on the range of support services for families who have children with disabilities.

Increasing Recognition of the Multiple Identity Categories That Children With Disabilities Occupy This final subsection examines the ways in which the CRPD Committee has examined the particular and additional intersectionalities that children with disabilities can experience and the multiple identity categories they occupy. It has been suggested that children with disabilities experience ‘double discrimination’ (Lansdown 2005), that is, discrimination on the basis of age and of disability as well as discrimination that arises from the intersection of these two variables. Recognition of the multiple intersectionalities that children with disabilities can experience beyond this has been given less attention. By far, the most comprehensive recognition of the intersectional discrimination experienced by children with disabilities is set out in the CRPD Committee’s response to Norway (2019). Here, the Committee expressed concern at [t]he unequal access to treatment, care and other opportunities for children with disabilities of migrant or refugee parents, children with disabilities with Sami background, children with disabilities belonging to national minorities, including Roma and Tater/Romani. It is also welcoming to see recognition of children with disabilities’ diverse lived experiences and backgrounds in the context of Iraq (2019): The fact that a large number of children with disabilities, particularly children with disabilities living in regions of the State party affected by armed 67

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conflicts, children with disabilities who are internally displaced, children with psychosocial or intellectual disabilities and children with disabilities living in rural areas, face violations of their rights, such as lack of access to services and loss of educational opportunities. (para. 15) The explicit recognition of diverse groups of children with disabilities has an important role to play in shining the spotlight on their particular experiences and the ways in which lived experiences of disability can intersect with age, circumstance (e.g. rurality), and background (e.g. ethnicity). The previous statement also boosts recognition that these experiences can vary depending on the nature of impairment. Similar themes arise across other Concluding Observations. There are common references to the needs of children with disabilities from remote and rural areas (China 2012; Mexico 2014; Rwanda 2019) as well as indigenous children with disabilities (Guatemala 2016; Mexico 2014; Peru 2012). The need to have sufficient baseline data upon which to develop appropriate and responsive services has been emphasised. For example: The Committee recommends that the State party . . . collect disaggregated information on the situation of and discrimination faced by children with disabilities, particularly indigenous children with disabilities, so as to formulate targeted programmes to tackle the exclusion they face. (Canada 2016, para. 18) The Committee is concerned at the invisibility of children with disabilities, in particular indigenous children, in statistical data of the State party (Peru 2012, para. 16) In recommendations to Honduras (2016), specific reference is made to Afro-Honduran children with disabilities, while in New Zealand (2014), the discrimination experienced by Māori children with disabilities is highlighted, along with reference to children with disabilities whose parents are Bidoon in Kuwait (2019) and children with disabilities in nomadic communities in Mongolia (2015). Finally, in the context of Germany (2015), the state was asked to pay particular attention to children with disabilities of migrant parents or refugees in developing and implementing legislation, policies, and measures.

Conclusion The CRPD Concluding Observations provide a rich and valuable resource within which the extent of rights-based discourse can be examined. While they are obviously not value free and are produced in very particular contexts, their role in allowing us to uncover shared—or contested—meanings at international level should not be underestimated. An individual set of Concluding Observations in 68

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isolation reflects the particular social, political, and cultural context of the country under examination. Read together as a whole, they can allow us to identify common themes, patterns, and ‘white spaces’ (Diem et al. 2014). It is important to note that the analysis carried out here, while comprehensive across states parties, focused only on Article 7 CRPD. The findings from the present analysis indicate that the CRPD Committee’s engagement with the lived experiences of children with disabilities in a rights context is becoming more nuanced, and a clearer picture is emerging of a child with a disability as a global rights-holder in practice. For example, there is a clear message that, at present and across countries and contexts, children with disabilities are not consistently being given the opportunity to express their views and that their right to do so must encompass all matters affecting them. While the right to express views is established by Article 7(3), its translation into policy and practice, appropriate rights actions, and filtering into the consciousness of duty-bearers can become legitimised and reinforced through Concluding Observations. Using the Concluding Observations in this way can help focus the mind of duty-bearers when determining the steps to be taken following a state examination process. The CRPD Concluding Observations provide a powerful lens onto the most pressing issues of the time and persistent breaches of the rights of children with disabilities as a whole. This chapter has identified ways in which some states have attempted to disguise institutionalisation as a form of deinstitutionalisation through the use of particular terms. In addition to identifying issues of urgency, the subtleties of language and constructs used by states parties in attempts to hide a human rights violation become apparent. Perhaps the most significant finding is the CRPD Committee’s engagement with the intersectionality of disability and age beyond the seemingly homogenous categories of childhood and disability. The argument that more needs to be done to integrate the concept of intersectionality into the work of UN human rights treaty bodies is not new (de Silva de Alwis 2009). As de Beco (2020) notes, there has been a tendency within human rights treaties to concentrate on monolithic identities, at the expense of the multiple characteristics of individuals within that group. Intersectional discrimination is given voice in the treaty text and has been evolving in some of its general comments with reference to, for example, girls with disabilities. This acknowledgement of intersectional discrimination has become ever clearer across the Concluding Observations with respect to children with disabilities, including the recognition that some groups of children with disabilities may be subject to different or more intense forms of discrimination compared to other groups of children with disabilities. Concluding Observations are not without their shortcomings. Application of the best interest principle is unclear and inconsistent. Within some Concluding Observations, neither best interest nor the right to express views were given mention. Given that these appear directly in the treaty text and reporting guidelines and are general principles under the CRC, this seems surprising and raises questions as to how far they are being effectively implemented at state level. Similarly, the concept of evolving capacities, which is listed as a general principle under Article 69

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3 of the CRPD, rarely appears. This is perhaps not altogether surprising. Hanson and Lundy (2017) have argued that there has been a lack of clarity and consistency in the formulation and application of the general principles in the context of the CRC. Nor is it clear why some substantive issues are considered under Article 7 and not others. However, Article 7 does appear to be a ‘natural’ home for the rights of children with disabilities to be explored in a holistic manner. What this means for the twin track approach taken in the treaty to children’s rights is less clear, but we would do well to continue to scrutinise the extent to which some substantive issues impacting children with disabilities fall between the two stools of the child-specific Article 7 and the mainstreaming of children’s rights elsewhere in the CRPD. This chapter argues that, going forward, the application of Article 7 provisions needs to be much more consistent across Concluding Observations. It is encouraging to see the extent of progress that has been made by the CRPD Committee since the adoption of the disability-specific treaty. The traditional deficit-based approach to understanding the lived experiences of children with disabilities is being challenged as never before, and there is some evidence that the CRPD Committee has sought to actively combat such negative discourses. In the face of a long history of silence, embedding a more meaningful rights discourse for children with disabilities is not without challenge, but it is essential. We must continue to call for this, consistently and loudly.

Documents relating to every State party examined by the CRPD Committee as well as other human rights treaty bodies can be found on the Office of the High Commissioner on Human Rights (OHCHR) website at www.ohchr.org The UN Treaty Body database contains all public documents adopted or received by the human rights treaty bodies including the CRPD Committee. This includes country specific information on: • • •

The ratification of international Human Rights treaties The reporting cycles All the documents related to a reporting cycle including State party reports and concluding observations. The UN Treaty body database can be accessed directly at: https://tbinternet.ohchr. org/SitePages/Home.aspx More specific searches of the database can be carried out by going to: https://tbinternet.ohchr.org/_layouts/15/TreatyBodyExternal/TBSearch.aspx

This allows searches by State/entity or geographic region, treaty body, and document type across specified time ranges.

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Note 1 All Concluding Observations to individual country state party reports listed in this chapter can be found at https://www.ohchr.org/en/treaty-bodies/crpd (last accessed 20 December 2022.

References Bantekas, I. 2018. Article 7: Children with disabilities. In I. Bantekas. M. A. Stein and D. Anastasiou (eds.), The UN convention on the rights of persons with disabilities: A commentary. Oxford: Oxford University Press. pp. 198–228. Beitz, C. R. 2009. The idea of human rights. Oxford: Oxford University Press. Byrne, B. 2012. Minding the gap? Children with disabilities and the United Nations convention on the rights of persons with disabilities. In M. Freeman (ed.), Law and childhood studies: Current legal issues 14, pp. 419–437. Byrne, B. 2013. Hidden contradictions and conditionality: Conceptualisations of inclusive education in international human rights law. Disability & Society 28(2), pp. 232–244. Byrne, B. 2019. Article 23 of the United Nations convention on the rights of the child: Children with disabilities. In P. Alston and J. Tobin (eds.), A commentary on the United Nations convention on the rights of the child. Oxford: Oxford University Press, pp. 856–902. Byrne, B. 2022. How inclusive is the right to inclusive education? An assessment of the UN Convention on the Rights of persons with disabilities’ concluding observations. International Journal of Inclusive Education 26(3), pp. 301–318. Callus, A. M. and Farrugia, R. 2016. The disabled child’s participation rights. London: Routledge. Campoy, I. 2017. Legal analysis of Article 7 of the Convention on the Rights of Persons with disabilities: Children with disabilities. The Age of Human Rights Journal 9, pp. 116–141. Committee on the Rights of Persons with Disabilities. 2009. Guidelines on treaty-specific document to be submitted by states parties under article 35, paragraph 1, of the convention on the rights of persons with disabilities. CRPD/C/2/3. [online] Accessed on 14 April 2022] Available from: www.ohchr.org/en/treaty-bodies/crpd/reporting-guidelines Committee on the Rights of the Child. 1991. General guidelines regarding the form and content of initial reports to be submitted by states parties under Article 44, Paragraph 1(a) of the Convention. CRC/C/5. [online] [Accessed on 14 April 2022] Available from: www. ohchr.org/en/treaty-bodies/crc/rules-procedure-and-working-methods Convention on the Rights of the Child. 1989. [online] [Accessed on 14 April 2022] Available from: www.ohchr.org/en/professionalinterest/pages/crc.aspx de Beco, G. 2020. Intersectionality and disability in international human rights law. The International Journal of Human Rights 24(5), pp. 593–614. de Silva de Alwis, R. 2009. Mining the intersections: Advancing the rights of women and children with disabilities within an interrelated web of human rights. Faculty Scholarship at Penn Law 1697. Diem, S., Young, M. D., Welton, A. D., Cumings, M. and Lee, P. L. 2014. The intellectual landscape of critical policy analysis. International Journal of Qualitative Studies in Education 27(9), pp. 1068–1090. Eekelaar, J. 1994. The interests of the child and the child’s wishes: The role of dynamic selfdeterminism. International Journal of Law, Policy and the Family 8(1), pp. 42–61. Goodman, R. and Jinks, D. 2004. How to influence states: Socialization and international human rightslLaw. Duke Law Journal 54(3), pp. 621–703 Hanson, K. and Lundy, L. 2017. Does exactly what it says on the tin? A critical analysis and alternative conceptualisation of the so-called “General Principles” of the Convention on the Rights of the Child. International Journal of Children’s Rights 25(2), pp. 285–306. Kayess, R. and French, P. 2008. Out of darkness into light? Introducing the convention on the rights of persons with disabilities. Human Rights Law Review 8(1), pp. 1–34.

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Bronagh Byrne Kilkelly, U. 2002. Disability and children: the Convention on the Rights of the Child. In G. Quinn and T. Degener (eds.), Human rights and disability: The current and future potential of united nations human rights instruments in the context of disability (OHCHR HR/PUB/02/1). Geneva: OHCHR, pp. 191–228. Lansdown, G. 2005. The evolving capacities of the child. Florence: UNICEF/Save the Children. Lawson, A. and Beckett, A. E. 2021. The social and human rights models of disability: Towards a complementarity thesis. The International Journal of Human Rights 25(2) pp. 348–379. Office of the High Commissioner on Human Rights [online] [Accessed on 14 April 2022] Available from: www.ohchr.org Sabatello, M. and Layden, M. F 2020. Children with disabilities: Achievements, prospects and challenges ahead. In J. Todres and S. M. King (eds.), The Oxford handbook of children’s rights law. Oxford: Oxford University Press. pp. 595–614. Sutherland, E. 2016. Article 3 of the United Nations Convention on the Rights of the Child: The challenges of vagueness and priorities. In E. E. Sutherland and L. A. Barnes MacFarlane (eds.), Best interests, welfare and wellbeing. Cambridge: Cambridge University Press. Union of Physically Impaired against Segregation/Disability Alliance. 1976. UPIAS/Disability Alliance. [online] [Accessed on 14 April 2022] Available from: https://disability-studies. leeds.ac.uk/wp-content/uploads/sites/40/library/UPIAS-fundamental-principles.pdf World Health Organisation 2011. World report on disability. Malta: WHO/World Bank.

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5 ‘THEY STILL NEED TO LISTEN MORE’ Working in Partnership with Disabled Young Researchers to Inform and Shape Country Submissions to the UN Committee on the Rights of Persons with Disabilities and UN Committee on the Rights of the Child Anita Franklin and Zara Todd Introduction Disabled children and young people across the world have the same human rights and fundamental freedoms on an equal basis with all other children. (For ease of reading, we will henceforth use the term disabled children to mean any disabled person up to the age of 18 years). All children experience marginalisation by virtue of being young. However, disabled children face higher levels of discrimination and exclusion which can lead to this group being silenced, disempowered, and subjected to higher levels of segregation, institutionalisation, and violence (see, for example, Martin and Franklin 2010; Fundamental Rights Agency [FRA] 2015; Jones et al. 2012; Longfield 2017; Children’s Commissioner 2017; UNICEF 2021). It is for this reason that disabled children are singled out as a specific named group and specifically mentioned across a number of human rights treaties. Disabled children can often be deprived of the protections and guarantees of general human rights agendas. They are therefore afforded separate articles—Article 23 of the United Nations Convention on the Rights of the Child (CRC 1989) and Article 7 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD 2006). This is in recognition of the specific discrimination faced by this group and of the need to assure disabled children’s human rights, especially to health, survival, education, independence, and an adequate standard of living. DOI: 10.4324/9781003056737-7

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Despite the recognition of increased discrimination, disabled children across the world are often barely visible in the monitoring of human rights conventions. Adult-focused agendas can dominate discourses on the CRPD. Within the CRC, it is also still evident that the rights of disabled children can be side-lined in a full agenda aiming to meet rights obligations for all children. Therefore, it is of critical importance that we share ways of working which enable the empowerment and engagement of disabled young people in human rights monitoring processes and beyond—within all arenas where decisions concerning access to human rights are discussed. The relative invisibility, and lack of involvement, of this group of children within monitoring processes can further perpetuate discrimination, as they are often not present, or in plain sight, when agendas for action and goal setting concerning human rights are decided. Disabled children can often be caught in a deplorable situation of invisibility, where they are neither invited to the table of decision-makers nor at the forefront of decision-makers’ minds, whilst at the same time the denial of their human rights across multiple dimensions is plain to see. This chapter discusses some of the challenges disabled children face to being ‘heard’ and ‘seen’ both in decisions about their own lives and within high-level policy decision-making arenas, such as human rights monitoring. We then present a case study from the UK exploring the methodology and learning from a disabled-youngresearcher-led project to gather evidence to inform the England Children’s Commissioner’s submission to the CRPD as part of the UN examination of the UK in 2017. It is hoped that by sharing this case study, we can challenge the often invisibility of disabled children within arenas of discussion, and decision-making, of policy. We also hope to challenge the often-held assumption that disabled children lack the capacity or the skills to lead work which can have an important influencing effect on government and non-governmental human rights reporting processes.

Disabled Children’s Rights to ‘Voice’ and Participation in Decision-Making The CRC (1989), ratified by almost every nation in the world, states within Article 12 that: State parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child. Similarly, the CRPD (2006) also embodies participation of disabled people, which includes children. In particular, Article 7 of the CRPD states that disabled children have the right to express their views freely on all matters affecting them, with their views being given due weight in accordance with their age and maturity on an equal basis with other children. In addition, they should be provided with disability- and age-appropriate assistance to realise that right. These articles have established the right to expression of views; however, the enactment of this right is open to interpretation. 74

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For example, there is no one agreed definition of participation, although the term is commonly used to describe the process of listening to and engaging with children. In reality, participation covers a broad continuum of involvement in decisions and involves numerous processes (Clark and Percy-Smith 2006; Lansdown 2010). Boyden and Ennew (1997) state that participation can simply mean taking part, being present, being involved or consulted. However, participation should also denote a transfer of power so that participants’ views have some influence on decisions. In the UK, participation is often described in terms of the levels of power that are shared with children and young people and multiple frameworks, and typologies have been developed to depict this (for example, Hart 1992; Lundy 2007; Shier 2001). Despite such theoretical positioning, challenges remain. Ratification of the CRC does not necessarily mean that such rights have been incorporated into domestic laws within individual countries. Therefore, in the absence of legal safeguards, and particularly in the case of disabled children—anti-discriminatory legislation—it remains the case that many disabled children across the world lack agency (UNICEF 2013; Wickenden 2019). Within the UK, disabled children have had the right to participate in decisionmaking since the early 1990s through legislation (such as the Children Act 1989, Children and Families Act 2014) and through the ratification of the CRC by the UK in 1991. Yet some 30 years later, evidence repeatedly shows that in reality, participation in decision-making is still limited and lags behind that of non-disabled children (Franklin and Sloper 2006, 2009; McNeilly, MacDonald and Kelly 2015; Brady and Franklin 2019; Longfield 2019; Greenaway-Clarke 2020). It is argued that this is due to persistent attitudinal and procedural barriers that impact on the involvement of disabled children within decisions about their own lives and within strategic decision-making arenas. Both decision-making processes are important and interdependent. However, as was acutely illustrated through the VIPER participatory research project discussed next, if children are excluded from making decisions in their own lives, they may not have the necessary skills, experience, confidence, or understanding to immediately participate in higher-level collective decision-making and policy-related work. This lack of skill and confidence can then be used as an indicator of a lack of capacity rather than an indicator of lack of experience or opportunity. We argue that the level of involvement, consultation, or giving of ‘power’ afforded to disabled children when reporting on the enactment, or not, of their rights is limited and needs urgent addressing.

Barriers to Participation Faced by Disabled Children and Young People A simple framework designed by Alderson and Montgomery (1996) defines four levels at which children can participate and, although dated, still holds sway today: 1. 2. 3. 4.

Being informed Expressing a view Influencing the decision-making process Being the main decider 75

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Although this framework was not developed for disabled children per se, it provides a useful starting point for examining their participation, including in terms of involvement in strategic policy involvement. Evidence suggests that disabled children are rarely included within decision-making in their everyday lives (Franklin and Sloper 2006, 2009; Greenaway-Clarke 2020; Martin and Franklin 2010; McNeilly et al. 2015). They are often not given opportunities to make choices, or given accessible information, and/or their access needs—particularly in terms of communication— are frequently not met. Therefore, opportunities to reach the level of influencing decision-making or experiencing a shift in power to being a main decider are potentially very limited (Franklin and Sloper 2006, 2009). Even knowing that you have rights, including a right to participate in decision-making as children, and as a disabled person, is often denied to this group (Brady and Franklin 2019).

Typologies of Adult Attitudes Towards Participation of Disabled Children It is perhaps not surprising that disabled children are denied opportunities to participate when evidence has shown that negative adult attitudes to participation prevail for children per se (Collins 2017; Crowley 2015; Tisdall 2017) without disabling attitudes adding further layers of discrimination. Shakespeare and Watson (1998) argued that disabled children are often viewed in stereotypes depicting vulnerability, dependence, and who lack agency, imagination, and creativity. Despite this reference being dated, the argument remains relevant some two decades later. Children’s opportunities to participate are subject to the inherent power imbalance that exists between adults and children. For disabled children, this is intensified by a power imbalance in favour of non-disabled people. Adults have the power to either facilitate or deny participation, and in most cases, opportunities to be involved in decision-making are based on adult perceptions about a child’s ability and capacity to participate. The infantilisation and overprotection, in some cases of disabled children, exacerbate this notion of lacking capacity and ability (Shakespeare and Watson 1998; Franklin, Raws and Smeaton 2015). As discussed next, this situation plays into dominant medicalised discourses regarding disabled children which can lead to this group being seen as ‘deficit’ or ‘other’, rather than as discriminated against, silenced, and not afforded their rightful opportunities to develop knowledge, skills, and experience in decision-making. Thomas and O’Kane (1999) produced a typology of adult attitudes to including disabled children which illustrated a clear distinction between those who focused on the child’s capacities or perceived lack of them and those who focused on adult skills or attitudes. They also identified an additional distinction between whether people were positive or negative about the likelihood of children being successfully included. Figure 5.1 illustrates succinctly how attitudinal barriers and perceptions of impairment can impact whether disabled children are heard, included, and empowered or, conversely, silenced, excluded, and disempowered. Highlighting a clear demarcation between disabilist attitudes and ones which seek to overcome perceived barriers, 76

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Figure 5.1

Matrix of attitudes to participation by disabled children and young people.

Source: Thomas and O’Kane (1999, p384).

McNeilly et al. (2015) reported similar findings in their study, illustrating that little had changed in the intervening decade.

The Medicalisation of Disability In many ways, it could be argued that negative attitudes towards disabled children’s participation continue to prevail because of the predominance of the medicalisation of disability or, as it has commonly been called, a medical model of disability (Oliver 1996). Others have argued that the continued dominance of the medical model of disability exacerbates all barriers for disabled children and young people’s participation (Martin and Franklin 2010; McNeilly et al. 2015). The medical model of disability is seen to individualise the issue of disability into personal deficits of the body or mind and thus focuses on what a person ‘cannot do’, as exemplified by the matrix documented previously in Figure 1. Alternatively, the social model of disability, developed during the 1970s by disability rights activists, defines disability as the social restriction placed on people with impairments by society. Thus, people are disabled by discrimination, by prejudice, and by a society that fails to address their needs in terms of social relations and structures and not by their bodies or as a result of their individual impairments (Oliver 1983). Although the social model of disability has been critiqued and further developed, it does provide a framework for considering how the participation of disabled children is shaped by structures and attitudes. Authors have highlighted how it can offer an alternative framework to seeing disabled children as ‘not capable of participation’ or ‘too difficult to include’ and thus locating them as the ‘problem’. (For further discussion of the social model of disability and its application to disabled children, see, for example, Shakespeare and Watson 1998; Davis and Watson 2002 Connors and Stalker 2007; Franklin et al. 2018). Despite the attitudinal and structural barriers disabled children face, research over the last 20 years has shown that disabled children are competent to make decisions, and that children previously considered ‘incapable’ of participating in policy development can be involved if flexible and/or creative methods are used and adults have a positive attitude towards involvement (RIPSTARS 2018; House of Commons Education Committee 2019). Groups of children previously deemed ‘incapable’ of 77

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participating—for example, neurodivergent children, children with communication and/or sensory needs and learning disabilities—are fully taking part in research and policy development, illustrating that they can express their views, have much to contribute, have differing perspectives to adults, and thus should participate in decision-making processes (for example, within the English government’s inquiry into provision for disabled children, House of Commons Education Committee 2019). Thus, it could be argued that their involvement, unique insight, and lived experience are vital to include in the monitoring of whether disabled children’s rights have been enacted by individual countries across the world, and across the world at a systemic level. Furthermore, they have a right to be involved, be consulted, and indeed, influence the agenda. The UK case study described in the following passages provides an example of how disabled children and young people’s participation rights can be enacted at a policy level. It will illustrate how disabled young researchers were enabled to set the agenda on deciding the nature and scope of policy reporting when those with ‘power’ are willing to share, embrace the expertise that disabled children possess, and are prepared to challenge the perceived and real barriers that prevent this work from happening.

The Reporting Mechanisms of the United Nations Treaties Before embarking on an exploration of the case study, we present a quick overview of the reporting mechanisms into which this case study fed. States which ratify the CRPD and its optional protocol are reviewed by the Committee for the Rights of Persons with Disabilities within two years of ratifying the Convention and then every four years after that. In this process, the state being reviewed has to provide a report to the committee on its progress meeting the articles of the Convention. An important element of the CRPD is that it is based on the principle of progressive realisation, which means that states have to be working towards achieving the convention articles rather than already meeting them. Following examination of the submitted state report, the Committee then issues a list of concerns which they want more information or details on, to which the state has to respond. During this process, civil society and national human rights institutions provide information to the committee through a variety of means, including, as in this case study illustration, through shadow reporting. This is a counter report to a state report and may highlight issues which have not been raised in order to help the Committee understand the whole picture in a state. The Committee takes all this evidence and subsequently issues Concluding Observations and recommendations identifying how states are performing and could improve in relation to the convention. The Committee’s Concluding Observations and recommendations are often used by civil society and human rights advocates to argue and campaign for change and the full rights entitlements of particular groups whose rights remain unmet.

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Background to ‘They Still Need to Listen More’ In the UK, there are four Children’s Commissioners—one each for England, Northern Ireland, Scotland, and Wales. The post of the Children’s Commissioner was established by the Children Act (2004) in order to promote awareness of the views and interests of all children, but in particular, those whose voices were least likely to be heard. The Children and Families Act (2014) further enhanced the role and remit of the Commissioner providing a legal mandate to promote and protect children’s rights, again particularly for groups of children who are considered to be at particular risk of having their rights infringed—thus including disabled children. It was the serious concerns about the inequalities faced by disabled children and young people in England, despite legislation preventing discrimination (Equality Act 2010), that led the Children’s Commissioner to fund four disabled young researchers from the VIPER young disabled researchers’ group. The group—further information about which is presented next—supported by the authors, was commissioned to work in partnership with the Commissioner and their team to undertake a national consultation exercise in 2014. This exercise sought the views of disabled children and young people as to whether they felt their rights had been enacted under the CRPD. The findings of the consultation will not be discussed here in any depth but are available online (Children’s Commissioner 2014). The rest of this chapter discusses the VIPER methodology utilised and the form of the consultation. It is hoped that this case study illustrates the potential for disabledchild-and-young-person-led work, where emancipatory values and mechanisms are in place, which enable disabled children and young people to demonstrate their skills, knowledge, and commitment to lobbying for social justice. And whereby disabled children and young people use research evidence they have collected to support their fight for their rights and social change.

The VIPER Disabled Child and Young Researchers’ Model Shared Identity VIPER stands for Voice, Inclusion, Participation, Empowerment, and Research—it is the name chosen by a group of 16 disabled young people aged 12–21 years from across England who were part of a research project (July 2010–Spring 2014). The VIPER project researched why disabled children and young people are excluded from decision-making (VIPER 2012), and the research was undertaken utilising a sharedpower model of participation. This involved empowering a group of disabled children and young people to be fully involved in all aspects of the research process and decision-making. Subsequently, this model was named the VIPER model. The name of the project created our shared identity, purpose, and mission—we all, including ‘staff’, became VIPERS. Following this unique power-sharing research project, the Children’s Commissioner in England commissioned the VIPERS directly to support

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their own work on the CRPD. Before sharing the work with the Children’s Commissioner, we describe the VIPER model, as this underpinned and was vital to the success of this joint venture.

Theoretical Underpinnings and Value Base There are two key theoretical underpinnings to the VIPER methodology which, we would argue, when operationalised, can lead to disabled-young-people-led impactful research and policy development. Firstly, the methodology is underpinned by the social model of disability: together we identify and address any individual or collective barriers the group might face to completing their research. Secondly, the work adopts a rights-focused framework that respects the young disabled researchers as decision-makers and co-leaders throughout the project. By adopting the social model of disability, the project recognises that young disabled people are disabled by social, physical, and attitudinal barriers in society and that these would need to be addressed to enable full and equal participation. The disabled young people’s access needs were very diverse, so part of the development work was around creating a space where everybody felt included and were empowered to fully participate in all research activities of their choice. This means the young researchers were supported to access any stage of the research process that they wished to and that they had choice and control over how they were engaged. At the recruitment stage for the group, in addition to asking basic information about access needs (for example: Do you need wheelchair access? Do you need a British Sign Language interpreter?), information was also sought on how best the group can support them. The young people chose to share information with each other, such as ‘I have difficulties with writing’ or ‘I sometimes need my own space’. This approach enabled them to better understand each other’s needs (including those with communication needs). It also meant that they were in control of their own information and not required to reveal the nature of their impairment or define themselves by a given label or diagnosis. Using this information, staff could adapt the research training and research activities, meeting times, and venues to meet the needs of everyone, thus addressing any structural and physical barriers to participation. Needs could then be met easily, such as having a breakout room in case someone needed time away from the group, minimising writing and using creative activities which required moving around the room or working in pairs and allowing the young people time to relax and get to know each other. In addition, to personalised attention to each young person’s access needs, the young people’s travel costs were fully paid. Funding was secured to ensure that any personal assistant costs were covered, and in recognition of the time and hard work of the young people, they were given honorarium gift vouchers. Prior to becoming a ‘VIPER’, none of the disabled young researchers had heard about the social model of disability. Training and discussions on the social model and history of the disability rights movement were facilitated by Zara, a disability rights activist and one of the authors of this chapter. Following these sessions, many of the young people reflected how learning this had enabled them to see impairment 80

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in a more positive light; they developed a shared identity and felt more empowered within their own lives. Reflective evaluation of the VIPER methodology has shown how important this learning is for disabled children and young people. However, it is vital that this is handled sensitively and that feelings which are often of anger are recognised, validated, and channelled into something positive—in this case, research to inform practice and policy change (Brady and Franklin 2019). A further ethos of the model is that the disabled children and young people are fully supported to understand and undertake research which can withstand scrutiny of rigour and validity. Utilising the research evidence to lobby for change in policy and practice lies at the heart of the model, and trying to change the lives of disabled children and young people is predominantly the motivation for the young researchers. Therefore, alongside workshops on rights and disability activism, an ongoing programme of participatory research training is delivered across the project timetable. This training covers all aspects of research design, ethics, data collection, analysis, report writing, and development of recommendations. Although all the young researchers receive the training, the level to which they get involved in stages of the research cycle is an individual choice. For example, some loved data collection, others enjoyed learning about analysis, whilst for some they used their skills in developing dissemination events; however, a team ethos was developed so that everyone saw and recognised individual contributions to the overall goal.

Putting Values Into Practice As already discussed, disabled children have a right to be involved in decision-making processes, but operationalising this right within a research process requires balancing multiple demands. We ultimately wanted to share as much power as was possible with the young disabled researchers and address any power imbalance so that they felt as—and indeed were—equal members of the research team. On reflection, there appeared to be four key factors which affected our abilities to achieve this equality: honesty, real choice, the young people’s experiences of decision-making, and managing parents/carers. There were a number of decisions which had to be made prior to involving the young people. These included the overall research question, budget amount, and timetable, all of which had to be determined in order to gain funding for the project. It was important to be honest about the limitations of decision-making with the young people from the outset and explain that there was no room for manoeuvre on issues such as the overall budget, but that we could decide within these parameters how much funding was spent on, for example, a dissemination event. However, having these parameters in place gave the project structure and focus early on when the young people were learning and gaining in confidence and experience, and in time, a higher level of shared decision-making on the operationalisation of the project was undertaken. Given that the overall structure of the research was pre-determined, it was vital that real choice and a sharing of power were facilitated in other ways; otherwise, the young people’s involvement would have been tokenistic. Thus, at each stage of 81

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the research process, the young researchers were involved in decisions concerning research instrument design, sampling, data analysis, reporting, recommendations, and establishing and implementing a dissemination strategy. As described, the project was also able to give them a choice about their level of involvement in each stage. Some were happy to attend meetings and contribute to decisions taken then, whilst others wanted to take on more proactive roles through, for example, interviewing participants, facilitating focus groups, coding and analysing the data, and disseminating research findings. Staff researchers’ willingness to share this power and create flexibility in their working practices and the adequate funding allowed this participation to happen. As already mentioned, some of the young researchers’ experiences of decisionmaking in their own lives were limited, and some lacked the knowledge and confidence at the beginning to take on higher levels of responsibility and, indeed, understand that they had the power to guide the research project. The training helped with this process, but it was also important to build in continuous choice about levels of involvement as the project progressed. For example, at the outset, it was explained that if they wanted to, they could undertake interviews with professionals or present at conferences. At first, few volunteered. However, as the project progressed and activities were further explained and became more real, their confidence grew, and so did a desire to get involved and try new things which were out of their comfort zone. Staff members had to respect the young people’s right to change their minds and continually revisit their right to choose. A further challenge for the project was managing parents/carers’ and other professionals’ expectations and involvement. Specific attention was given to ensuring that they, too, understood the project aims and ethos and were aware of the ethical framework and safeguarding principles in place. Ongoing consent from the young people was sought (including those aged under and over 16 years) and regularly reviewed during the length of the project. Ongoing parental consent was sought for those aged under 18 years. Given the long-term commitment, level of involvement, and long-distance travelling involved in undertaking a national study, it was important that understanding and partnerships were also established with parents/carers. In order to take part in the project, the young disabled people had to travel across England to meetings, fieldwork, and dissemination events. Although a generous budget covered all travel costs and the cost of a personal assistant if required, the project did rely on the goodwill of parents/carers to support their child’s involvement, and many did accompany them (although as confidence grew, some young people started to travel independently). Following the first meeting of the group where parents stayed in the room, it became apparent that parents/carers also needed to share the ethos of the project and understand that the young people’s participation was central. It was the young people’s project, their input, and their decisions and not those of the parents. All parents became supportive of the ethos, and good relationships with the parents were built. On reflection, it can be seen that, for some parents, their child’s empowerment was a new experience, and possibly, others were worried that the staff might not be 82

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able to include their child or that their child might find it difficult to contribute. It was thus important for parents to feel confident in staff abilities to support and properly involve their child. At first, some preferred to stay close by in a parents’ room provided for them. As the project progressed, most decided to spend the day of the meetings sightseeing in London instead. A particular young person’s right to choice was also exercised when a teacher told them that they could only take part in the project if they were accompanied by a befriender. Following the first meeting (when the young person was accompanied by their parent and befriender), the young person asked whether he could attend future meetings alone; he had fully accessed and contributed to the activities without support. With his parent’s full consent, he did not bring the assistant again and went on to take on some of the most challenging tasks, including interviewing directors of children’s services, developing many of the research recommendations, and undertaking conference presentations. This is also an example of how negative attitudes can affect involvement, in this case, an underestimation of the young man’s abilities to participate independently.

Utilising the VIPER Methodology in the UN Reporting Processes Having described how the VIPER model was developed within a research project, the rest of the chapter explores how VIPERs worked in partnership with the Children’s Commissioner in England to produce the They still need to listen more report and recommendations for the enactment of rights for disabled children and young people in England under the CRPD. Four of the original 16 VIPERS applied to work alongside the Children’s Commissioner and undertake this additional piece of research utilising the VIPER model. These children and young people had already undertaken training in research methods (research design, data collection, analysis), ethics, safeguarding, and on the rights of children and disabled people. Their extensive experience of undertaking a research project, including developing policy recommendations, meant that they could deliver this project within the required tight time frame and small budget and draw upon their knowledge of research to work in equal partnership with the Children’s Commissioner. This is important to reflect on, as without this initial investment, the level of young-person-led delivery and sense of ownership might have been compromised by the short time scale and limited funding and might have led to tokenism. The VIPERS were not starting from scratch; they were empowered to suggest, lead, and challenge—even high-powered officials from government. The aim of the Children’s Commissioner was to ensure that disabled children’s and young people’s views and voices were at the centre of the research process. Specifically, the research aimed to understand disabled children and young people’s perspectives on the realisation of their rights in England in 2014. Originally, the research was intended to assist the pre-sessional working group of the CRPD in its consideration of issues on which to examine the UK in its initial reporting process. However, 83

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the date for this examination was postponed, so findings were presented in a report looking at the state of disabled children’s rights in England in 2014. Commissioning the VIPERS allowed the research questions, methodology, and recommendations to be driven by disabled young people. Working in partnership with staff from the Children’s Commissioner, the VIPERS designed, delivered, and undertook focus groups with disabled children and young people across England. They then analysed the findings and developed recommendations to inform the Commissioner’s submission as part of the UK reporting process to the United Nations. In detail, the project involved two one-day planning workshops where the VIPERS worked together with staff from the Children’s Commissioner’s Office to think through the ethical and safeguarding issues arising from this piece of work. Time was also devoted to developing and agreeing on a sample and the methods for consulting with other disabled children and young people. A participatory session was also facilitated by the authors to ensure the VIPERS could learn about, and examine, the CRPD and the reporting process so that they could see where this piece of work fitted into a wider national, and international, agenda. The workshops also involved scoping the focus of the research. The VIPERS went through a process of reviewing all the rights outlined in the CRPD and systematically prioritising those they felt would have the most impact on the lives of disabled children and young people. This was challenging, given that the rights within the Convention cover a wide range of important aspects of life. Following much debate, the following rights were identified by the young researchers as being of most relevance to disabled children and young people in the UK at that time: • • • • • • • • • • • • •

Article 5: Equality and non-discrimination Article 7: Situation of children with disabilities Article 8: Awareness—raising of disability rights and disabled people in society Article 9: Accessibility and independence Article 15: Freedom from torture or cruel, inhuman, or degrading treatment or punishment Article 16: Freedom from exploitation, violence, and abuse Article 19: Living independently and being included in the community Article 20: Personal mobility Article 21: Freedom of expression and opinion and access to information Article 24: Education Article 27: Work and employment Article 28: Adequate standard of living and social protection Article 30: Access to sport and culture

During the data analysis phase, Article 4 (general obligations) and Article 21 (family life) were added to the list, as disabled children and young people within the focus groups raised rights issues relating to these Articles. It is also important to note that rights must be viewed as interdependent despite their distinctiveness. Identifying and utilising this approach enabled the focus group participants a route into thinking 84

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about individual and collective rights and to learn, often for the first time, about the CRPD and its contents. The VIPERS co-led decisions about the demographics of the disabled children and young people they thought should be included as research participants. They specifically requested recruitment of: • • • •

A wide age range (5–25 years); Disabled children and young people from different ethnic backgrounds; A good geographical spread, including a mix of children and young people living in urban and rural areas; Children and young people with a range of impairments and, specifically, those with communications needs who, in their experience, were always excluded from having their views heard.

Due to limited time and budget, the final sample of disabled children and young people who took part was being supported within the community and recruited via youth groups known to the Children’s Commissioner or the authors. This may be seen as a limitation, but through the careful selection of the different types of community groups, children and young people with a wide range of experiences and impairments were included. Due to the diversity of the VIPER group itself, the young researchers were trained in, and were comfortable with, adopting methods to support the full involvement of, for example, those with learning, communication, sensory, or neurodiverse needs. Time was devoted to understanding these access needs in advance and in setting up the groups so that they were fully accessible. Disabled children living within institutional settings were not represented, which was identified as a limitation of the work. In total, 34 disabled children and young people took part, 19 identified as female and 15 male, and they were aged between 5 and 24 years. Finally, during the preparation workshops, the VIPERS explored methods of engagement and data collection to be adopted within the focus groups. Drawing on their previous research experience, they developed approaches that could be tailored in each focus group session to meet the access needs of specific individuals. With this in mind, they suggested a ‘menu’ of activities that could be carried out with the different groups. They also developed a flexible focus group framework which examined the prioritised rights and which could be adapted to meet the access needs of the groups they were consulting. The young researchers were also careful not to limit discussion by the choice of rights that they had made and so included a very open question to enable young people to raise issues pertinent to them. They included icebreaker games, comfort breaks, and a variety of activities to facilitate discussion. Accessible information about the project was also developed to send to disabled children and young people who might be interested in taking part in the research and who met the criteria for inclusion. As agreed, as part of the commissioning contract, the focus groups delivered across England were subsequently co-facilitated by a VIPER researcher and staff member from the Children’s Commissioner. Data were 85

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recorded via flipcharts and activity sheets and digitally recorded where consent was given by all participants. Consent to participate was sought from all children and young people. For those aged under 16 years, parental/carer consent was also sought. All those involved had capacity to consent. Consent and rights to withdraw or not answer individual questions was reiterated at the beginning of the focus groups and was an ongoing process. Following the focus groups, the VIPERS attended a further workshop with staff from the Children’s Commissioner’s Office to undertake a thematic analysis of the data using the rights as a framework. Data were reviewed under each CRPD article, and then key recommendations were developed. These were developed working in partnership with the Commissioner to ensure that they were practical and rightsbased focused. Due to time constraints, the final report was written by a senior policy adviser at the Children’s Commissioners Office who included supplementary research evidence relating to disabled children and young people’s rights where it supported issues raised during the focus group sessions. This constraint was discussed with the VIPERS. However, they wanted the report to look ‘professional’ so that it had maximum impact and agreed that it should be written by the Children’s Commissioner. It is interesting to note that despite their systematic, rigorous research approach and own capabilities to write a comprehensive report, they still felt that it would not be accepted as ‘professional’ if written by disabled young people themselves. A final workshop was held with the VIPERS to review the final report. This provided them with an opportunity to highlight any gaps, ensure the right key issues were raised in the executive summary, and further shape the final set of recommendations. In addition, they provided clear steer and advice on the creation of an accessible children and young people’s version of the report. The Children’s Commissioner committed publicly in the report to use the views of the children and young people who took part in the research in a number of different ways. They included: •

• •

informing and shaping any submission they made to the UN Committee on the Rights of Persons with Disabilities (CRPD) as well as the UN Committee on the Rights of the Child (CRC); informing and shaping the Children’s Commissioners strategic priorities for 2015–2018 and business plan for 2015–2016; and supporting current and continued work.

Dr Maggie Atkinson, the Children’s Commissioner at that time, made a public commitment to submitting the findings of this consultation when the UN Committee on the RPD called the UK state party to demonstrate how well these rights are realised. She stated in the final publication, ‘[T]his report, and the accounts of real children’s lives it contains, will contribute both soundly and challengingly to the debate’ (Children’s Commissioner 2014, p. 6). The words and views of the disabled young people were included and significantly featured in her submission to the United Nations.

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Reflecting on Our Practice The VIPER methodology has been independently evaluated, and feedback from the young disabled people and external commentators has been overwhelmingly positive. There are, of course, some limitations which warrant discussion. This approach has now worked successfully with a wide age range, involving children and young people with a wide range of impairments and diverse lived experiences and in researching a number of issues (see Rip et al. (2018) and who are the ‘next generation’ of disabled young researchers who have utilised this model. The model has successfully developed and supported 24 disabled young researchers across an 11-year time span and whose work has informed and influenced policy and practice nationally. We are, however, conscious that this approach, with its emphasis on the social model of disability, is predominately Western European–centric, and there is much debate about the utility of the social model internationally (Grech and Soldatic 2016). It is also fairly well-funded, which has implications for replicability within countries with more limited resources. The authors, working with the RIPSTARS, are fortunate to be currently working with partners in the Philippines to test, develop, and learn how this model can be adapted to contexts in the Global South, where barriers and facilitators to the involvement of disabled children will be different. It is important that the approach is tested on further groups and the learning shared so that this work can develop and grow accordingly. There is a general lack of evaluation of participation and, importantly, critical sharing and reflection on disabled-young-people-led practice, possibly a reflection of its rarity still. Factors such as the realistic funding and the positive dynamics of the group have been contributors to its success. The project team are acutely aware that this might not always be the case. The role of a disabled activist in the research partnership was extremely important and, as far as we are aware, is fairly unique. Their contribution in terms of the training and in supporting the young people cannot be underestimated. In addition, the young disabled people reported independently that staff were positive role models and an inspiration to them. Many had not had experience of seeing disabled people in powerful positions within the workforce. It is impossible to know the extent to which this affected how the young disabled people became empowered, but it is undoubtedly a contributing factor.

Conclusion It is hoped that the sharing of the VIPER project experience and the model of operation in which it worked will stimulate debate and further practice development in the area of disabled children and young people’s participation in decision-making in everyday life, in collective action, and in the monitoring nationally and internationally of human rights of disabled children. Our experiences have shown that attitudinal and physical barriers can be overcome, and that the barriers to their participation in debates about, and agenda setting for, human rights can be challenged. Through this project, the Children’s Commissioner in England raised issues regarding the lack of disabled children and young people’s rights across 13 Articles of the CRPD. Based

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on these findings and the joint work with the VIPERS, the Commissioner made six specific recommendations to the English government regarding: 1. 2. 3. 4. 5. 6.

disability hate crime, victimisation, and abuse; educational support; career opportunities; access to work and support to achieve independence; changing attitudes towards disabled children and young people; and access to appropriate welfare support to ensure basic needs are met and that additional impairment-related high costs for heating, transport, food, clothing, and education are supported.

The VIPERS titled their report ‘They still need to listen more’—we would argue that this would not be difficult to achieve if decision-makers are prepared to share power and recognise the rights and strengths of disabled children and young people.

Resources to support working in partnership with disabled young people in decision-making. One of the objectives of the VIPER methodology is to improve the rights to involvement of disabled children in decision-making. On an individual level, the disabled young researchers’ motivation, and the longevity of their involvement in the group, is based on a desire to improve the lives of other disabled children and young people. Whenever funding allows, the group produces resources to support the participation of disabled children and young people in decision-making. These resources are freely available on www.ripstars.net. These include: Hear Us Out Guide: This VIPER guide to participation looks at the steps organisations should follow when creating participation opportunities for groups of disabled young people. The guide aims to support decision-makers who say they want to learn how to involve disabled children in decision-making and that they want to learn about what works directly from young disabled people themselves. This guide is based on our experiences from  the VIPER project,  and on the evidence we gathered through our national research project. VIPER Ingredients of High-Quality Participation: A  checklist for how to include disabled young people in decision-making shows ten important elements that we collectively believe make up high-quality participation for young disabled people. This was developed after looking at existing participation standards and frameworks, the findings from our national research and drawing on our own experiences of what good participation looks and feels like for disabled young people.

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References Alderson, P. and Montgomery J. 1996. Health care choices: Making decisions with children, London: Institute for Public Policy Research. Boyden, J and Ennew, J. 1997. Children in focus—A manual for participatory research with dhildren. Stockholm: Save the Children. Brady, G. and Franklin, A. 2019. Challenging dominant notions of participation and protection through a co-led disabled young researcher study. Journal of Children’s Services 14(3), pp. 174–185. Children Act. 1989. [online] [Accessed on 1 May 2022] Available from: www.legislation.gov. uk/ukpga/1989/41/contents Children Act. 2004. [online] [Accessed on 1 May 2022] Available from: www.legislation.gov. uk/ukpga/2004/31/contents Children and Families Act. 2014. [online] [Accessed on 1 May 2022] Available from: www. legislation.gov.uk/ukpga/2014/6/contents/enacted Clark, A. and Percy-Smith, B. 2006. Beyond consultation: Participatory practices in everyday spaces. Children, Youth and Environments 16(2), pp. 1–9. Children’s Commissioner. 2014. ‘They still need to listen more’. A report about disabled children and young people’s rights in England. [online] [Accessed on 1 May 2022] Available from: www.childrenscommissioner.gov.uk/wp-content/uploads/2017/07/They_still_need_to_ listen_more_a_report_about_disabled_childrens_rights_in_England.pdf Children’s Commissioner. 2017 Implementation of the United Nations Convention of the Rights of Persons with Disabilities. Submission to inform the CRPD list of issues on the UK. [online] [Accessed on 1 May 2022] Available from: www.childrenscommissioner.gov. uk/wp-content/uploads/2017/06/Childrens-Commissioner-Submission-CRPD-List-ofissues-PDF.pdf Collins, T. M. 2017. A child’s right to participate: Implications for international child protection. The International Journal of Human Rights 21(1), pp. 14–46. Connors, C. and Stalker, K. 2007. Children’s experiences of disability: Pointers to a social model of childhood disability. Disability and Society 22(1), pp. 19–33. Convention on the Rights of Persons with Disabilities and Optional Protocol 2006. [online] [Accessed on 1 May 2022] Available from: www.un.org/disabilities/documents/convention/convoptprot-e.pdf. Convention on the Rights of the Child. 1989. [online] [Accessed on 1 May 2022] Available from: www.ohchr.org/en/professionalinterest/pages/crc.aspx Crowley, A. 2015. Is anyone listening? The impact of children’s participation on public policy. The International Journal of Children’s Rights 23(3), pp. 602–621. Davis, J. M. and Watson, N. 2002. Countering stereotypes of disability: Disabled children and resistance in disability and postmodernity. In M. Corker and T. Shakespeare (eds.), Disability and postmodernity: Embodying disability theory. London: Continuum, pp. 159–74. Equality Act. 2010. [online] [Accessed on 1 May 2022] Available from: www.legislation.gov. uk/ukpga/2010/15/contents FRA. 2015. Violence against children with disabilities: Legislation, policies and programmes in the EU. Vienna: Fundamental Rights Agency. [online] [Accessed on 1 May 2022] Available from: https://fra.europa.eu/en/publication/2015/violence-against-children-disabilitieslegislation-policies-and-programmes-eu Franklin, A., Lund, P., Bradbury-Jones, C. and Taylor, J. 2018. Children with albinism in African regions: Their rights to ‘being’ and ‘doing’. BMC Int Health Hum Rights 18, p. 2. Franklin, A., Raws, P. and Smeaton, E. 2015. Unprotected, overprotected: Meeting the needs of young people with learning disabilities who experience, or are at risk of, sexual exploitation. [online] [Accessed on 1 May 2022] Available from: www.barnardos.org. uk/sites/default/files/uploads/Unprotected%2C%20overprotected%20-%20meeting%20 the%20needs%20of%20young%20people%20with%20learning%20disabilities%20who%20 experience%2Cor%20are%20at%20risk%20of%2C%20sexual%20exploitation%202015.pdf

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Anita Franklin and Zara Todd Franklin, A. and Sloper, P. 2006. The participation of disabled children and young people in decision-making within social services departments. A national survey. British Journal of Social Work 36(5), pp. 723–741. Franklin, A. and Sloper, P. 2009. Supporting the participation of disabled children and young people in decision-making. Children & Society 23(1), pp. 3–15. Grech, S. and Soldatic, K. eds. 2016. Disability in the Global South. The critical handbook. Geneva: Springer International Publishing. Greenaway-Clarke, J. 2020. Advocacy and ‘non-instructed’ advocacy with disabled children and young people with complex communication needs (Doctoral Thesis University of Portsmouth). [online] [Accessed on 1 May 2022] Available from: https://ethos.bl.uk/OrderDetails. do?did=1&uin=uk.bl.ethos.820414 Hart, R. 1992. Children’s participation: From tokenism to citizenship. Florence: UNICEF, International Child Development Centre. House of Commons Education Committee. 2019. Special educational needs and disabilities. First report of session. [online] [Accessed on 1 May 2022] Available from: https://publications.parliament.uk/pa/cm201919/cmselect/cmeduc/20/20.pdf Jones L., Bellis M. A., Wood S., Hughes K., McCoy E., Eckley L., Bates G., Mikton C., Shakespeare T. and Officer A. 2012. Prevalence and risk of violence against children with disabilities: A systematic review and meta-analysis of observational studies. Lancet 380(9845), pp. 899–907. Lansdown, G. 2010. The realisation of children’s participation rights: Critical reflections. In B. Percy-Smith and N. Thomas (eds.), A handbook of children and young people’s participation: Perspectives from theory and practice. Oxon: Routledge. Longfield, A. 2017. Implementation of the UN Convention on the Rights of Persons with Disabilities: Submission to inform the CRPD List of Issues on the UK Office of the Children’s Commissioner. [online] [Accessed on 1 May 2022] Available from: www.childrenscommissioner.gov.uk/publication/implementation-of-the-unconvention-on-the-rights-of-persons-with-disabilities/ Longfield, A. 2019. Advocacy for Children: Children and young people’s advocacy in England. [online] [Accessed on 1 May 2022] Available from: www.childrenscommissioner.gov.uk/ publication/advocacy-for-children/ Lundy, L. 2007. ‘Voice’ is not enough: Conceptualising article 12 of the United National convention on the rights of the child. British Educational Research Journal 33(6), pp. 927–42. Martin, K. and Franklin, A. 2010. Disabled children and participation in the UK: Reality or rhetoric? In B. Percy-Smith and N. Thomas (eds.), A handbook of children and young people’s participation perspectives from theory and practice. Oxon: Routledge. McNeilly, P., Macdonald, G. and Kelly, B. 2015. The participation of disabled children and young people: A social justice perspective. Child Care in Practice 21(3), pp. 266–286. Oliver, M. 1996. Understanding disability: From theory to practice. Basingstoke: Macmillan. Rip, S., Franklin, A., Brady, G. and Durell, S. 2018. Defining quality and rights based education, health and care plans (EHCPs) for disabled children and young people. Coventry University, Coventry. [online] [Accessed on 1 May 2022] Available from: https://ripstars.net/ Shakespeare, T. and Watson, N. 1998 Theoretical perspectives on research with disabled children. In C. Robinson and K. Stalker (eds.), Growing up with disability. London: Jessica Kingsley, pp.13–27. Shier, H. 2001. Pathways to participation: Opening, opportunities and obligations. Children and Society 15(2), pp. 107–117. Thomas, N. and O’Kane, C. 1999. Experiences of decision-making in middle childhood: The example of children ‘looked after’ by local authorities. Childhood 6(3), pp. 369–387. Tisdall, E. K. M. 2017. Conceptualising children and young people’s participation: Examining vulnerability, social accountability and co-production. The International Journal of Human Rights 21(1), pp.59–75.

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‘They still need to listen more’ UNICEF. 2013. Children and young people with disabilities: Factsheet. New York: UNICEF. UNICEF. 2021. Combatting the costs of exclusion for children with disabilities and their families. New York: United Nations Children’s Fund (UNICEF). VIPER. 2012. The VIPER project: What we found. London: National Children’s Bureau. [online] [Accessed on 1 May 2022] Available from: http://councilfordisabledchildren.org.uk.testing. effusion3.dh.bytemark.co.uk/help-resources/resources/viper-report-what-we-found Wickenden, M. 2019. ‘Disabled’ versus ‘nondisabled’: Another redundant binary? In A. Twum-Danso Imoh, M. Bourdillon and S. Meichsner (eds.), Global childhoods beyond the North-South divide. Geneva: Palgrave MacMillan, pp. 23–144.

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6 HUMAN RIGHTS THROUGH THE EYES OF CHILDREN WITH DISABILITIES Elena Jenkin, Erin Wilson, Robert Campain, Kevin Murfitt, and Matthew Clarke Introduction Children have their human rights affirmed in human rights conventions, with specific rights for children recognised in the Convention on the Rights of the Child (1989) (CRC). More recently, the Convention on the Rights of Persons with Disabilities (2006) (CRPD) recognises the additional protection children with disabilities require to realise their everyday rights (McCallum and Martin 2013). However, the actualisation of human rights is yet to be seen by many children with disabilities living in developing countries (Grech 2016), and the ‘lived reality is often distant from the legal rhetoric’ (Meekosha and Soldatic 2011, p. 1394). In seeking to enhance the utility of human rights approaches, many critiques have been made of human rights. Two issues are of particular importance to this chapter and the project it reports on. First, critics have argued that the language and conceptualisation of human rights, in its universal intent, risks ignoring or invalidating localised understandings and lived reality. Second, the views of children have not been routinely included in conceptualisations, assessments of human rights attainments, or the design of activities to attend to human rights. To address this significant gap, a key requirement is an adequate understanding of the lived experience of children with disabilities in order to enact, protect, and monitor human rights (Landman in Olshanska et al. 2016). This chapter reports on a project designed as a case study to capture the views of children with diverse disabilities in Vanuatu and Papua New Guinea (PNG) and, in doing so, brings the views of children with disabilities about human rights to the fore to explore the localised meanings of human rights inherent in their commentary. We examine the value of the CRPD as a meaningful instrument in understanding the lives of children with disabilities and their needs and investigate what is missing from the CRPD in representing the local experience of children with disabilities in PNG 92

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and Vanuatu. Overall, we explore how we might make the universal language of the CRPD more inclusive of different contexts, and the rights language more encompassing of the ‘local’.

Universal vs Localised Human Rights It has been over 30 years since the CRC first came into place. While the CRC is an international agreement adopted in 1989 to protect and fulfil children’s rights, the CRPD came into force in 2006 in response to the recognition that people with disabilities faced significant and specific barriers and required recognition of disability as a human rights issue. The CRPD requires states to take extra measures to create an enabling environment and ensure people with disabilities have their rights protected (WHO 2020). All the CRPD articles are inclusive of children with disabilities; however, children are specifically mentioned in Article 7, where their best interests and viewpoints are expressly protected, and states parties are required to take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children. (CRPD Art. 7) While human rights are an important construct and legal framework for international equality, it is also widely contested and critiqued. The concept of rights has been criticised for being a Western and individualised model that is applied to states and cultures that are diverse and potentially collective in nature. Ife and Tascón (2016, pp. 27–28) identify the legalistic approach to human rights which privileges civil and political rights and devalues ‘economic, social and cultural rights, and collective rights’. This leaves rights in the private domain largely unprotected, where human rights abuses are typically suffered by women and children, including those with disabilities (Ife 2012). The imposition of human rights as a universal hegemonic discourse and a legal-based framework has been critiqued as an extension of colonialist practice (Ife and Tascón 2016; Meekosha and Soldatic 2011) that has denied a variety of contextual interpretations, indigenous knowledges, values, and law (Budde et al. 2017; Meekosha and Soldatic 2011). Further, the implementation of human rights of children has conventionally been a ‘top-down’ exercise, with states ratifying universal rights and then implementing rights accordingly (Morrow and Pells 2012; Vandenhole 2012). This ‘top-down’ focus has left little room to understand the everyday human rights experiences of children and the rich and varied range of experiences of those who reside in diverse contexts across the globe. As Ife and Tascón, (2016, p. 28) argue, ‘[t]he vast majority of the world’s population has had no say in how those rights are defined, what is included, what is excluded, and the language used to construct them’. In addition, the experiences of children with disabilities in the Global South are further marginalised through the construction of Western understandings of disability, childhood, and 93

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development. As we have argued in Jenkin et al. (2018), the perceptions, expectations, and treatment of children with disabilities in the developing world are shaped and influenced, directly or indirectly, by Western-dominated theories of childhood, disability, and colonisation. Each of these, separately and combined, acts to silence and marginalise the voices of children with disabilities in the developing world. To challenge this inequity, human rights cannot be seen solely through a universal lens but must be viewed through a local lens as experienced uniquely among a diversity of disability and contexts (Grech 2016; Meekosha and Soldatic 2011). While the arguments for the ‘localising’ of human rights are presented in more detail elsewhere (Jenkin et al. 2019), in summary, critics of a ‘top-down’ approach have argued the need to understand human rights in everyday contexts, or from the bottom up (Alderson and Morrow 2011; Ife 2010; Liebel 2012b). A local understanding of human rights will have contextual and cultural relevance and validate world views, better enabling ‘a response to culturally or otherwise specific challenges and local issues’ (Vandenhole 2012, p. 80). In this way, human rights involve a tension between universalism and the contextual: [H]uman rights are constantly being defined and redefined, constructed and reconstructed, in people’s daily lives and their interactions with others, and also in their conscious reflection of what ‘human rights’ mean in context. (Ife 2010, p. 135) The critiques of human rights outlined here highlight the need to challenge the universal hegemony of human rights discourse and frameworks while also recognising the idea of human rights as important in helping identify ‘a kind of international human connection’ (Ife and Tascón 2016, p. 27).

Human Rights and the Voices of Children With Disabilities In order to bring the local into human rights understandings, we need mechanisms to engage with diverse populations in diverse locations in order to identify their experience. This is also true for children with disabilities who need opportunities to be explicitly provided so that they can share their unique experiences, concerns, and priorities about their lives. Listening to children with a diverse range of disabilities, understanding their issues, and involving them in research is crucial to understanding more about their lives (Sabatello 2013) and ensuring they are participating in decisions that involve them. In turn, this can enhance their inclusion in all facets of society (Kembhavi and Wirz 2009; Mitchell 2009; Singal 2010), enable an improved integration into both policy and practice (Carpenter and McConkey 2012), and assist in achieving positive social change (Nguyen et al. 2015). Fulfilling the right of children with disabilities to not only have a voice and be heard but to also be responded to has clear implications for research as well as all forms of public consultation, service planning, and evaluation. This also necessitates an ability to translate human rights findings to ‘local meanings and existing cultural values and 94

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practices’ (Tobin 2011, p. 74) in order to address human rights from the ground up (Liebel 2012a; Vandenhole 2012). Kjørholt (2017, pp. 167–168) states that understanding children’s rights in context will ‘contribute to a better life for children in different parts of the world’. This approach will assist in reform that occurs according to children’s priorities and in ways and means that work ‘in a culturally, politically, economically and socially sensitive way’ which starts with the principle of due deference to children and their communities (Budde et al. 2017, p. 239). Children with a range of different impairments need to be heard so that understanding of their needs and concerns is representative of the diverse disability population (Carpenter and McConkey 2012; Huus et al. 2015). As Sabatello (2013, p. 484) argues: [S]tudies of the perspectives of children with disabilities about their rights, how they want them to be implemented, and what are the barriers they experience are crucial to develop a child-centred approach to the implementation of the CRPD. However, while the CRPD, as with the CRC, directs attention to the need for states parties to consult with children with disabilities (Art. 4.3) and the argument for localising human rights is a compelling one, overall there is scant data related to the human rights experience of children with disabilities around the world (Office of the United Nations High Commissioner for Human Rights [OHCHR] 2012). In addition, very little data is self-reported by children from developing countries (Wickenden and Elphick 2016). This lack is underpinned by persistent limited perceptions of children’s agency and capacity, especially those with disability and those in developing countries (Jenkin et al. 2018). Wickenden and Elphick (2016, p. 169) report that the ‘changing perceptions and expectations about children’s agency have generally not been extended to disabled children . . . who remain largely excluded from participatory research and consultation’. This chapter addresses some of the issues outlined here by presenting the results of speaking to 89 children with disabilities in Vanuatu and Papua New Guinea about their human rights. In doing so, we seek to identify the local and contextual experiences and priorities in relation to human rights, as expressed by children, and compare these to the rights framed within the CRPD. In the following, we will briefly outline the method of data collection used, then focus on the content of this data to highlight some of the tensions in localising universal human rights.

Project Description The following outlines some of the key aspects of the project to establish the context for the discussion on the findings and the value of the CRPD as an instrument reflecting the lives of children with disabilities in the Global South. The project methodology and methods have been discussed in detail elsewhere (Jenkin et al. 2017, 2018) so will only be briefly outlined here. 95

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The ‘Voices of Pacific Children with Disability’ research project was a two-year project funded by the Australian government to investigate the human rights needs and priorities of children (aged 5–18 years) with disabilities in Vanuatu and PNG between 2013 and 2015. The project involved a partnership between Deakin University, Save the Children (STC) Vanuatu, PNG, and Australia, along with disabled persons organisations (DPOs) in each country—the Vanuatu Disability Promotion and Advocacy Association (VDPA) and Papua New Guinea Assembly of Disabled Persons (PNG ADP). Given the critiques of the ‘top-down’ approach to human rights, researchers aimed to develop a methodology and methods in line with a more ‘bottom-up’ approach. This recognised and affirmed the local context of the experience of children with disabilities. The use of local adult researchers with local cultural knowledge and, in most cases, their own personal experience of disability in this context assisted with this method. Local researchers facilitated the generation of data in local languages and were involved in the subsequent data analysis. Importantly, the research developed and utilised methods that allowed children with a range of disabilities to communicate about their experiences via aural, visual, oral, and tactile modes. This enabled the self-report of 89 children with diverse disabilities across the two countries (Jenkin et al. 2017; 2019; 2020). The CRPD was chosen as the specific human rights convention to apply as the analytical framework given its focus on people with disabilities and recognition of children within this. As the CRPD covers a breadth of life experiences from home and family life to cultural participation, it was determined that the use of the CRPD as an analysis framework would test whether it does, indeed, encapsulate children’s anticipated broad and diverse priorities and concerns. While, arguably, all human rights conventions are to be applied when analysing rights contexts, in this instance, we have relied solely on the CRPD in order to understand its localised meanings and the adequacy of its coverage of local priorities of children with disabilities. Selecting the CRPD also responds to the critique that children with diverse disabilities in developing countries are not adequately represented in human rights data (Office of the United Nations High Commissioner for Human Rights [OHCHR] 2012). One of the key issues for the project was the recognition that for children with disabilities who have limited or no access to education, human rights may be an abstract construct (Grech 2016). While the focus of the project was establishing a means to ask children about their human rights priorities, the decision was made not to use human rights language or terms that may not be understood by children and their families. Instead, three questions were used to allow children to explore and communicate their priorities, concerns, and future aspirations: 1. What is important to you in your life? 2. What are your hopes and dreams? 3. What would make your life better or happier? Data was gathered by local researchers who engaged with children—and their families—over multiple visits to explore and check answers to questions for clarity 96

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and consistency. Data was transcribed into English by the local researchers, with the data sent to university-based researchers in Australia for analysis.

Method of Data Analysis Articles 3–30 of the CRPD were used as a coding frame from which to construct an understanding of children with disabilities’ human rights priorities. The data, in the form of translated transcriptions, artwork, and photos, was carefully examined as a whole for each child in relation to each of the three questions, prior to coding the data into analytical themes (Bloomberg and Volpe 2012) related to the CRPD articles. An inductive method was used to generate sub-themes within articles to further detail the ideas expressed by children (Saldaña 2009), as outlined in Jenkin et al. (2018). These sub-themes provide a more accurate portrait of children, highlighting their particular experiences and viewpoints within articles of the CRPD. At times, a deductive method further supplemented this sub-thematising, drawing on specific foci within sections of articles. For example, Article 30 pertains to participation in cultural life, recreation, leisure, and sport so each of these areas were used as subthemes, with further sub-themes added via inductive analysis (Jenkin et al. 2018). Data analysis was done in stages, with the first stage undertaken by Australian-based researchers. The second stage involved work with Vanuatu and PNG co-researchers, which included training in data analysis method along with collective data analysis activities that enabled co-researchers to independently code subsets of the data. This was followed by comparison of the results with the analysis undertaken by their Australian colleagues. The meaning of data and the differences in coding were discussed in order to provide further instruction to the Australian-based researchers who were to conclude the data analysis (Jenkin et al. 2018). A limitation should be noted that, while this approach enabled the involvement of in-country co-researchers as a means to privilege cultural interpretations, it did not involve children with disabilities who had provided data.

What Children Told Us About Human Rights Experiences and Aspirations While children with disabilities living in developing countries are not likely to immediately understand the language of human rights or be aware of the protection they are entitled to under the CRPD or other human rights instruments, research by Wickenden and Elphick (2016, p. 178) has shown that children with disabilities have been able to articulate ‘in practical ways their rights as citizens and their needs as people’. The ‘Voices of Pacific Children with Disability’ project attempted to straddle both the universal language of human rights and the localised meanings and experience of them. Next we present children’s commentary aligned to the articles of the CRPD, highlighting the resonance of children’s priorities with the CRPD, along with the localised meanings and values that need privileging in order to understand the human rights experience of children with disabilities in PNG and Vanuatu. 97

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By far, the largest amount of data was generated by children around question 1 of our focus questions (i.e. what is important in children’s lives). Here, children reported data against 17 of the 27 articles of the CRPD used as the coding frame (see Table 6.1 for the seven most frequently identified articles). Table 6.1 Frequency of response by child respondents: (Q1) What is most important in your life? (top seven responses as analysed against the CRPD) CRPD article

Total respondents Vanuatu PNG Male Female

9 Accessibility 19 Living independently and being included in the community 23 Respect for home and family Desire to support family later in life Acknowledgement of special relationships past and present, care/sacrifice from family, love Pet/animals Family life/rituals/activities/home Wants to have a partner/children 24 Education Vocation, key to opportunities Friends Wants to learn and achieve, enjoys learning Wants to access education/denied access— transport/hurt/health Family helps to achieve educational goals Not specified 27 Work and employment Family sacrifice Child currently working Desires employment in future/making life better Related to education Current family income important 28 Adequate standard of living and social protection Food and hunger Family work to cover needs Future planning Warmth House 30 Participation in cultural life, recreation, leisure, and sport Rec activities, sport, and culture (Kastom) Playing with friends Leisure

6 10

5 5

1 5

5 6

1 4

30

17

13

15 1 9

15

4 3

3

98

28

11

21

33

17

8 2 1 3 1 1 8

11

3

19 10 2 6 3 1 2 8 1 1 5

12

1 9 2 5 4 3

3 1

1 1 15

1

4 3 2

12 2 2

5 1

1 20

4 24

2 2 9

11 8 15

4 6 5

14

13

13

6

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While some articles did not receive attention, children did provide data that could be aligned against the majority of articles within the CRPD and, in doing so, provided insight into both their priorities as well as the localised meanings and lived experience of human rights for children with disabilities in each country. Overwhelmingly, children in both countries highly valued the role of participation in cultural life, recreation, leisure, and sport (Art. 30); home and family (Art. 23); and education (Art. 24) in their lives and futures, as discussed in the following. Data that was coded as relating to participation in cultural life, recreation, leisure, and sport (Art. 30) was heavily weighted to themes around engaging in leisure, sport, and recreation and being with friends. Leisure activities valued by children included fishing (watching and participating), television, outdoor play including both with friends and animals (such as the household chickens, or listening to birds), walks, driving in a truck (with family members), reading, music, and dancing. Children valued a wide range of cultural and recreational activities, including painting and drawing, gardening, creating toys, swimming, playing football and ball games, going to church and singing, playing guitar, and performing in ‘kastom’ ceremonies (such as dancing, storytelling, and ritual celebrations). I like the guitar. I have seen people use the guitar in church. I want to play the guitar in the church like my friends. (7-year -old boy with cognitive impairment, PNG) I often take part in ‘kastom’ ceremonies because my father and mother are ‘kastom’ dance performers and my father performs a lot of different types of ‘kastom’ activities. (10-year-old boy with physical impairment, Vanuatu) For many children, friends are central to their life (Article 30), with a focus on playing with friends and opportunities to make new friends: Friends are very important to me. When they are not around, I am lonely, and search around for them, then sit quietly/sadly. (13-year-old boy with physical and cognitive impairment, PNG) Many children reported playing with friends at school and opportunities to make new friends through school as the most important thing in their lives, consistent with the CRPD (UN 2006, Art. 30.5d) that recognises that school is an important mechanism for access to other children to participate in play and leisure activities. However, in contrast to much of the framing of CRPD Article 30, children with disabilities in PNG and Vanuatu actualise their rights to recreation, sport, and culture by relying on informal activities (e.g. non-formal sports activities) in their local outdoor environments (rather than formal public facilities and venues to which they require access), facilitated by or engaging with people in the child’s family or community. Additionally, the range of activities is diverse and has little resonance with 99

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the activities listed in Article 30, such as ‘theatres, museums, cinemas, libraries and tourism services’ (Art. 30, 1.c). Cultural participation encompasses formalised cultural and religious activities, reliant on local church or community infrastructure, not discussed in Article 30. While Article 30 (5.c and 5.e) addresses the role of organised sport and leisure and accessible venues, these have little relevance to the children in this study, where their rights are largely contingent on access to informal activity, peers, and others (in informal roles), with the risk that localised understandings and lived reality are ignored or invalidated. Similarly, family life and ‘respect for home and family’ (UN 2006: Art.23) have particular meanings for children with disabilities in Vanuatu and PNG, not adequately captured in Article 23 or elsewhere in the CRPD. While Article 23 largely focuses on rights to remain with birth family and, when ready, to marry and have children, children in this study focused on their valuing of the care provided by family and their desire to, in turn, support their family in a reciprocal way. I really want to be a primary school teacher because my parents are making so much effort to make sure I have a good education. If I become a teacher I can earn a living and help my parents and support them . . . and help my community. . . . I want to finish my education. (Vailea, 8-year-old girl with intellectual and communication disabilities, Vanuatu) [Researcher note: She chose the picture of the market display and said thus:] [I]n the future, I will be able to sell things at the market and get money to support my family. (Ruth, teenage girl with a physical disability, PNG) Children highlighted the important role family members have in their lives and, by implication, the importance of ensuring this is an ongoing role, especially in the absence of other services and supports. The most important things in my life are my mother, father, brother and sister . . . that surround me with care and love. They are really important because I need help moving, going to the toilet and some other activities. If I can’t do something—like reach my beads [for making items to sell], I call out to one of my family or friends and they come and help. (13-year-old girl with cerebral palsy, Vanuatu) My mother is really important to me because she cares for me and looks after me so well. . . . I couldn’t achieve what I have without my mother’s help. (9-year-old boy who is deaf, Vanuatu) My mother is the most important person in my life, because I love her so much. She cares for and supports me. (14-year-old boy who is blind, PNG) 100

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For children in this study, animals were also an important aspect of family life, often having dual roles in the family as providing food (chickens) or catching rats (cats), which were valued by children. Further, animals were also highly valued friends and playmates for children with disabilities and considered part of the family household. Overall, family plays a critical role in children with disabilities’ lives, and the home is a place for care, love, play, learning, and role modelling around work. This speaks to a much wider affirmation of ‘respect for home and family’ than is captured in the CRPD. While the CRPD identifies the right to provision of support to the child and family (Art. 23.3), the emphasis throughout is to ‘prevent concealment, abandonment, neglect and segregation of children with disabilities’ (Art. 23.3). This does not capture the descriptions of positive family life and care provided by children, or any right to support to attain these valued experiences. Not surprisingly, education (UN 2006, Art. 24) was also the topic of frequent commentary by children. Experiences of formal education for children in this study included both mainstream schools as well as special education units attached to a mainstream school setting. Again, the focus of this article is on formal education and supports; however, children in this study also recognised that their family is a major provider of education, which does not fall within the purview of Article 24. I like spending time with my mum more than anything else because she spends so much time with me teaching me things. (10-year-old boy with Down syndrome, Vanuatu) My mother . . . helps me to learn and that’s why I am able to read and communicate so well. (9-year-old boy who is deaf, Vanuatu) Additionally, for children in this study, the focus on education was on the outcomes arising from it, particularly with regard to linking to employment, the independence that earning an income enables, and in providing social opportunities through friendships. School is the most important thing in my life and spending time with my friends. I have an opportunity to learn so much at school and at the end of my studies I can achieve whatever I want to. I want to have a future that I can be proud of. At school I also have an opportunity to be with my friends and make new friends. (16-year-old girl with a physical impairment, Vanuatu) My education is really important and I want to go on to further studies when I finish primary school because I want to be a policeman and help my family especially my mother, brother and sisters. (13-year-old boy with a vision impairment, Vanuatu) 101

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This emphasis on the vocational outcomes of primary and secondary education is not reflected in the CRPD (though perhaps could be taken as implied); rather, the emphasis is on access to and provision of education. On the topic of access to education, children comment on continued barriers to education, including transport, negative treatment at school (from pupils or teachers), lack of adequate health supports (e.g. medication) to enable school attendance, and the financial barrier that school fees pose in the face of ongoing family poverty. None of these barriers find specific expression in the universal language of this article, where the emphasis is on reasonable accommodation rather than explicit attention to overcoming the systemic barriers to attendance and learning that result from poverty and poor social infrastructure. Children also provided commentary that could be aligned to other articles of the CRPD, offering insight into the way they hold localised meaning. Many children, particularly in PNG, commented on the importance of food to them in their lives, with a focus both on favourite foods and on the desire to avoid hunger. [Child chooses the pictures of the fruits and vegetables. He then drew the pumpkin and a pineapple. He signed . . .] Food is important in my life. I don’t like to feel hungry. I need to have plenty of fresh food. (12-year-old boy with hearing and speech impairment, PNG) Of those who prioritised food, many also focused on the plants and animals in their home and community that provided them with food for sustenance as well as the importance of food production and sale as income to support the family. [Child’s first photo choice is of the market house.] I chose that because it is the place where the mamas sell their food and earn money. (11-year-old girl with intellectual disability, Vanuatu) I have also planted 100 coconut palms. I think that soon I will get cash income. . . . Those coconut palms are really important to me. (16-year-old boy with intellectual disability, Vanuatu) While Article 28 deals with ‘[a]dequate standard of living and social protection’, including ‘adequate food’ (UN 2006: Art. 28, 1), it does not reflect this local attention to the importance of access to food production (the tending of and access to trees, plants, and animals that are food staples and that can be converted to cash). The prevailing discourse of Article 28 is that of the right to social protections in various forms, including poverty reduction programmes, respite and retirement programmes, income support, and public housing. While important, these programmes do not reflect the emphasis children place on their (and their family’s) own agency in providing an adequate standard of living through their own labour, a theme also reflected in children’s discussion of employment and livelihoods. Children provided two main themes when discussing their desire for community inclusion, neither of which are found within the text of Article 19 (UN 2006), 102

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though they are consistent with its intent. First, a majority of children who provided this commentary focused on the importance of church attendance both in terms of its religious role and as a place to spend time with friends. Access to friends was the second theme, and children’s discussion highlighted that, for some, this involved friends being able to visit them in their home, where they may be largely confined due to lack of mobility equipment, physical access, or support. In this context, community inclusion is not solely focused on community beyond the home but on the involvement of community into the home locale. I love the company of children being around me. When children play around me, they make me feel happy and not worried, they make me laugh and take away thought of being lonely. (16-year-old girl with physical and cognitive impairment, PNG)

The Lens of Localisation: Areas Not Represented in the CRPD While children’s data can largely be aligned with the CRPD, albeit with local meanings that are not explicit in the articles, there were a few areas where the things children held dear do not have resonance within the Convention (though are found within the Universal Declaration of Human Rights). These exceptions were related to God and spirituality, along with nature and the environment, as discussed in the following. Across the three interview questions, ten children (mixed gender) discussed the importance of God, Jesus, church, prayer, and religious singing to them (five in each country). This ought to not be surprising, as the religiosity of children is well noted in the literature (see Coles 1990; Bales 2005; Smith and Denton 2005), though there is scarce literature on the religious beliefs and practices of children with disabilities, with attention focused predominantly on the religious beliefs of parents and families of children with disabilities (see O’Hanlon 2013; Bennett et al. 1995). Sui, an 18-year-old young man with a cognitive impairment from PNG who spent his days searching for food and begging in the streets, mentioned the importance of a spiritual relationship with God, the importance of knowing God and communing with God through prayer. The PNG co-researcher notes: We had a general discussion with Sui and ask him what is important in his life. He replied that the most important thing in his life is God. We ask him why God is important in his life. He said, ‘God created all mankind and we are his children.’ (Co-researcher notes regarding Sui, 18-year-old boy with cognitive impairment, PNG) For many children in this group, God provided comfort and hope in everyday life as well as for the future, with several expressing their belief in God keeping 103

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them safe. Prayer was also a significant element of life mentioned by three children, including as a mechanism to seek redress for life difficulties (one child used prayer in the face of difficulties at school) and as a fundamental element of life in the future: I would like to have a house and a church that I will use for praying. (8-year-old boy with physical impairment, Vanuatu) Across both countries, attending church and singing with friends and community was identified by researchers within Article 30 and/or Article 19 in the instance where it was related to an activity within and among their community. Attending church could be seen to be connected with the child’s cultural identity or participation in a cultural event (Article 30), with one child explaining a desire to play guitar in order to fulfil this role at church like his friends do (quote provided previously). While participation in church had cultural as well as social value (meeting friends) and was clearly a highly valued normative activity within the cohort in each country, as discussed previously, the spiritual aspect of religious practice and sites had real meaning for children, from which they derived wellbeing. Put simply: Going to church and singing makes me happy. (12-year-old girl with vision impairment, Vanuatu) Singing in church is important to me, because I go to hear God’s word. (8-year-old boy with vision impairment, Vanuatu) The important sound I heard is the singing in the church . . . [because] churches help us to respect other people just as they are. (18-year-old boy with vision impairment, PNG) Singing songs, especially praise and worship songs, [are important to me] because I believe that Jesus takes care of me in my life. (16-year-old girl with physical and cognitive impairment, PNG) In addition to this focus on spiritual or religious needs, children also discussed the importance of nature to them. The connection with and value of nature and the environment was a small but important one among some child participants. Three ni-Van children and one child from PNG considered their love of nature as most important to them. I like fishing by myself beside the river or the seaside. I want to get as many fish as I can. I really enjoy being by myself every time when I am in those places. (16-year-old boy with cognitive impairment, Vanuatu) 104

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Similarly, a key aspect of another boy’s life was his activity outdoors: The most important things in Rozario’s life are that he likes exploring around in the boundaries of their home to discover the things in the environment, like birds and other animals. (Researcher notes for 8-year-old boy with hearing impairment, Vanuatu) Rozario’s enjoyment was similar to a 12-year-old boy with a physical impairment from PNG who enjoys climbing trees and to a ni-Van girl who loves birds and being in the garden with them. Whilst the earlier data was identified by researchers within Article 30 (cultural life, sport, and leisure), the enjoyment of being by the river or seaside also speaks to the importance of nature and environment in a way that goes beyond leisure, to a more inquisitive interest and a spiritual or mental well-being element. This data combines to suggest that children’s spiritual life, the significance of God and prayer, along with nature and the environment, are important features in their lives. We suggest that these domains currently sit outside of the CRPD and that children with disabilities’ rights to access spiritual experiences that tend to psychological and ontological needs are not protected by it. Ife (2010) emphasises the importance of spirituality in people’s lives and argues that ‘to discuss human rights—what it means to be human—without including the spiritual is to deny the reality (however constructed) of most of the world’ (p. 190). Spiritual rights are uncomfortable notions for universal rights, according to Ife (2010), but are of equal importance, though defining spirituality extends beyond Western rationality, as it incorporates indigenous and cultural practices and traditions that include ritual, song, poetry, artistic expression, and even silence. The same emphasis applies, too, to what Ife (2010) terms environmental rights. Here, he includes Indigenous peoples’ connection with their land and long traditions of caring for the environment as well as a right to a clean and safe environment. This has echoes of the children’s interest in being in and communing with nature. Ife (2010) suggests that spiritual and environmental rights are not necessarily disparate; they can be one and the same, as some may experience a spiritual connection when among nature and on the land. The incorporation of the spiritual and environmental dimensions into human rights or an alternative frame that encapsulates children with disability’s experiences and priorities is worthy of consideration.

Applicability of Findings: Bridging the Universal and Local Value of Human Rights The inclusive data collection methods and the use of the CRPD as an analytical coding frame generated valuable data about the lives of children with diverse disabilities in PNG and Vanuatu. In doing so, it illuminated clear priorities of children with disabilities. Despite the fact that a small number of children’s data did go beyond the 105

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CRPD, in articulating the importance of spirituality and the natural environment, the CRPD, as a theoretical paradigm and a pre-set coding frame, proved a useful tool by which to understand and group children’s data. The data has led to a range of change strategies, discussed in Jenkin et al. (2020). For example, the Vanuatu Disability Promotion and Advocacy Association (VDPA) reported key findings from children with disabilities that were included in the Vanuatu CRPD Alternative Report and submitted to the Committee on the Rights of Persons with Disabilities in 2018 (Konkon et al. 2018). This demonstrates that children with disabilities can participate in the mobilisation of human rights via local and global mechanisms. However, it is important to note that the data in this research does not provide a total picture of the human rights experience of children with disabilities in these countries and remains highly interpretive. Alongside the important data from children is the data from parents or carers which provided a scaffolding of information around the child’s data. There is also a place for adding quantitative and other data to provide further evidence regarding, for example, poverty or access to education and health services that may be beneficial to policymakers and further articulate human rights experiences. As it stands, the analysis of the data within the CRPD provides human rights data for the first time from this cohort in PNG and Vanuatu. This chapter has explored questions about the extent to which the CRPD is able to encompass and reflect local contextualised life priorities of children with disabilities, with a focus on Vanuatu and PNG. Notably, the method used in this research, that is, to use the notion of what is important to children as a proxy for discussion about human rights areas, is subject to critique. Despite this, in the main, we found that the two did align. This alignment then offered the opportunity to further compare descriptions of life priorities and rights and identify differences and similarities. We have largely focused on differences in this chapter, as a way of exemplifying the gap between universal articulations of rights and local lived experience of what is locally valued. In several areas, we have offered analysis to suggest that the CRPD reflects formal institutions and practices and less so the domestic and intimate reality of daily life. The CRPD speaks to states parties as the primary duty bearer and, in doing so, often obscures the settings and actors beyond this. For children with disabilities in Vanuatu and PNG, the state has little presence in their lives, and formal institutions, beyond the church, school, and community governance, are largely lacking. As a result, where the CRPD focuses on formal institutions and neglects to speak of the role of informal supports and settings, it struggles to retain synergy with children with disabilities’ lived experience of life areas that have rights protections. The Convention’s discourse of social protections and provision of necessary supports, while structurally important, also obscures the importance of individual agency and the supports and freedoms necessary to enact it that children speak of repeatedly. Finally, the absence of discussion of spiritual life (including via connection to nature and environment) and rights to the various expressions of this is a critical disjuncture of the CRPD from children’s lived reality and priorities. Further research in this area is required as consideration of religion and spirituality to be more purposely 106

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included in the CRPD is warranted. As Ife states, ‘what constitutes the basic rights of all human beings will be a matter for ongoing debate and redefinition and should always be open to challenge’ (Ife 2012, p. 4). While, to some extent, these conclusions have been foreshadowed in the literature presented earlier in this chapter, the data presented here has concretised these theoretical critiques.

Conclusion To begin to have the human rights of children with disabilities in developing countries addressed, children need to explore the question of rights from their own cultural experience and world views and ‘have those voices heard, acknowledged and validated’ (Ife and TascÓn 2016, p. 30). Bringing the priorities of children with disabilities to the fore via research is one way to enhance the cultural evolution that sways towards the greater awareness, and the furthering, of the ways children with disabilities shape their worlds. Attending to their voices has suggested that there is need to consciously interpret the CRPD into local lived experience and to consider whether the CRPD and its articles adequately capture the diversity of context. Of most importance is to ensure cross-cultural understanding through the holding together of the universal and local interpretations towards human rights frameworks and implementations serve the lived reality of children with diverse disabilities across the globe.

The ‘Voices of Pacific Children with Disability: Identifying the Needs and Priorities of Children with Disability in Vanuatu and Papua New Guinea’ research project had a number of aims, including the development of a method of data collection/communication with children with diverse disabilities to enable them to ‘speak’ for themselves. A range of inclusive ‘tools’ for communicating with children with diverse disabilities were developed or adapted from existing tools. These methods provided researchers with a means of addressing the key question; What are the human rights needs and priorities of children with disability in Vanuatu and Papua New Guinea? A website (https://www.voicesofchildrenwithdisability.com/) developed for the project presents a set of resources for supporting the involvement of children with disability in research, as well as consultation, policy and service development, monitoring and evaluation. The website also provides information about the project and its findings, along with resources and films produced during the project. The information was developed as part of the two-year research project.

Funding Details The ‘Voices of Pacific Children with Disability’ research project was supported by the Australian government, Department of Foreign Affairs and Trade (DFAT), under grant number ADRAS201200381. 107

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Acknowledgements The authors wish to thank all the children and families for agreeing to take part in the project and sharing their thoughts and stories. We also acknowledge the important work of the researchers in both PNG and Vanuatu. No potential conflict of interest was reported by the authors.

References Alderson, P. and Morrow, V. 2011. The ethics of research with children and young people: A practical handbook. London: Sage Publications Ltd. Bales, S. 2005. When I was a child. Chapel Hill: University of North Carolina. Bennett, T., Deluca, D. A. and Allen, R. W. 1995. Religion and children with disabilities. Journal of Religion and Health 34(4), pp. 301–312. Bloomberg, L. D. and Volpe, M. 2012. Completing your qualitative dissertation: A road map from beginning to end. New York: Sage Publications. Budde, R., Invernizzi, A., Liebel, M. and Milne, B. 2017. Unfinished, with so much left to do, Judith Ennew’s Legacy. In A. Invernizzi, M. Liebel, B. Milne and R. Budde (eds.), ‘Children out of place’ and human rights. Geneva: Springer International Publishing, pp. 233–254. Carpenter, J. and McConkey, R. 2012. Disabled children’s voices: The nature and role of future empirical enquiry. Children & Society 26(3), pp. 251–261. Coles, R. 1990. The spiritual life. Boston: Houghton Mifflin. Convention on the Rights of Persons with Disabilities. 2006. [online] [Accessed on 22 December 2021] Available from: www.un.org/disabilities/convention/conventionfull.shtml. Convention on the Rights of the Child. 1989 [online] [Accessed on 22 December 2021] Available from: www.ohchr.org/en/professionalinterest/pages/crc.aspx. Grech, S. 2016. Disability and development: Critical connections, gaps and contradictions. In S. Grech and K. Soldatic (eds.), Disability in the global south: The critical handbook. Cham: Springer International Publishing, pp. 3–19. Huus, K., Granlund, M., Bornman, J. and Lygnegård, F. 2015. Human rights of children with intellectual disabilities: Comparing self-ratings and proxy ratings. Child: Care, Health and Development 41(6), pp. 1010–1017. Ife, J. 2010. Human rights from below: Achieving rights through community development. Port Melbourne: Cambridge University Press. Ife, J. 2012. Human rights and social work: Towards rights based practice. Cambridge: Cambridge University Press. Ife, J. and TascÓn, S. M. 2016. Human rights and critical social work: Competing epistemologies for practice. Social Alternatives 35(4), pp. 27–31. Jenkin, E., Wilson, E., Campain, R. and Clarke, M. 2018. Beyond childhood, disability and postcolonial theory: Young children with disability in developing countries can tell their own story. In M. Twomey and C. Carroll (eds.), Seen and heard: Exploring participation, engagement, and voice of children with disabilities. London: Peter Lang Publishers, pp. 57–80. Jenkin, E., Wilson, E., Campain, R., Murfitt. and Clarke, M. 2020. Embedding change: Designing short term projects for sustainable effect. In B. R. Crisp and A. Taket (eds.), Sustaining social inclusion. London: Routledge. Jenkin, E., Wilson, E., Clarke, M. and Campain, R. 2019. Bridging the local—universal fivide of human rights research: Voices of children with disability in developing countries. In K. Scorgie and C. Forlin (eds.), Promoting social inclusion: Co-creating environments that foster equity and belonging (International Perspectives on Inclusive Education, Vol. 13), London: Emerald Publishing Limited, pp. 121–137. Jenkin, E., Wilson, E., Murfitt, K., Campain, R. and Clarke, M. 2017. Listening to the voices of children: understanding the human rights priorities of children with disability in Vanuatu and Papua New Guinea. Disability and Society 32(3), pp. 358–380.

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Human Rights through the Eyes of Children with Disabilities Kembhavi, G. and Wirz, S. 2009. Engaging adolescents with disabilities in research. ALTER, European Journal of Disability Research/Revue Européenne de Recherche sur le Handicap 3(3), pp. 286–296. Kjørholt, A. T. 2017. Children’s rights to participation: ‘Out of place’ or ‘in context’? In A. Invernizzi, M. Liebel, B. Milne and R. Budde (eds.), ‘Children out of place’ and human rights. Geneva: Springer International Publishing, pp. 157–170. Konkon, A., Green, E. S., Caleb, N., Childs, M., Vereti, L., Pakoa, A. and Lakavia, J. 2018. Vanuatu CRPD alternative report. Vanuatu: Vanuatu Disability Promotion, Association (VDPA) in partnership with Vanuatu Society of People with Disabilities (VSPD) and Transparency International Vanuatu (TIV). Liebel, M. 2012a. Children’s rights from below: Cross-cultural perspectives. Hampshire: Palgrave Macmillan. Liebel, M. 2012b. Framing the issue: Rethinking children’s rights. In M. Liebel (ed.), Children’s rights from below. Hampshire: Palgrave Macmillan, pp. 9–28. McCallum, R. and Martin, H. 2013. Comment: The CRPD and children with disabilities. Australian International Law Journal 20, pp. 17–31 Meekosha, H. and Soldatic, K. 2011. Human rights and the Global South: The case of disability. Third World Quarterly 32(8), pp. 1383–1397. Mitchell, W. 2009. ‘I know how I feel’: Listening to young people with life limiting conditions who have learning and communication impairments. Qualitative Social Work 9(2), pp. 185–203. Morrow, V. and Pells, K. 2012. Integrating children’s human rights and child poverty debates: Examples from young lives in Ethiopia and India. Sociology 46(5), pp. 906–920. Nguyen, X. T., Mitchell, C., de Lange, N. and Fritsch, K. 2015. Engaging girls with disabilities in Vietnam: Making their voices count. Disability & Society 30(5), pp. 773–787. Office of the United Nations High Commissioner for Human Rights (OHCHR). 2012. Human rights in the Pacific—Country outlines. Fiji: Office of the High Commissioner for Human Rights Regional Office for the Pacific. O’Hanlon, E. 2013. Religion and disability: The experiences of families of children with special needs. Journal of Religion. Disability & Health 17(1), pp. 42–61. Olshanska, Z., van Doorn, J. and van Veen, S. 2016. My story, my rights: How individual stories of people with disabilities can contribute to knowledge development for UNCRPD monitoring. Knowledge Management for Development Journal 11(2), pp. 43–62. Sabatello, M. 2013. Children with disabilities: A critical appraisal. The International Journal of Children’s Rights 21(3), pp. 464–487. Saldaña, J. 2009. The coding manual for qualitative researchers. London: Sage Publications Ltd. Singal, N. 2010. Doing disability research in a Southern context: challenges and possibilities. Disability & Society 25(4), pp. 415–426. Smith, C. and Denton, M. 2005. Soul-searching. Oxford: Oxford University Press. Tobin, J. 2011. Understanding a human rights-based approach to matters involving children: Conceptual foundations and strategic considerations. In A. Invernizzi and J. Williams (eds.), The human rights of children: From visions to implementation. Oxon: Routledge, pp. 61–98. Vandenhole, W. 2012. Localizing the human rights of children. In M. Liebel (ed.), Children’s rights from below: Cross-cultural perspectives. Hampshire: Palgrave Macmillan, pp. 80–93. Wickenden, M. and Elphick, J. 2016. Don’t forget us, we are here too! Listening to disabled children and their families living in poverty. In S. Grech and K. Soldatic (eds.), Disability in the Global South. Cham: Springer International Publishing, pp. 167–185. World Health Organization (WHO). 2020. Why is the convention on the rights of persons with disabilities important? [Online] [Accessed on 22 December 2021] Available from: www.who.int/news-room/q-a-detail/why-is-the-convention-on-the-rights-of-personswith-disabilities-important

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Vignette Two MEET CHARLIE

I’m Charlie. I’m 15 years old, and I live with my mum, dad, sister, and three cats. Me and my sister are like chalk and cheese, but we love each other a lot. I’m really into Japanese—I started learning the language during lockdown. I also love video games, fantasy books, and composing music on the piano. I’m studying for my GCSEs right now. I have a big group of friends, although I didn’t really have any friends at school until year 9. I use they/them pronouns. Also, I have type 1 diabetes, and I’m autistic. I feel as though they are both highly stigmatised conditions, and I wish people understood more about them. I found out I’m diabetic when I was 8. It started when we noticed I was drinking a lot of water and then my hair started falling out, which wasn’t fun. Later on, I had to sleep with my parents because in the night I was getting these shooting pains in my eyes. Having type 1 diabetes is harder than people think. It’s like this rigorous control you have to keep, like taking care of a child 24/7. Also, autism comes with executive dysfunction, which means that remembering what I need to do to control my diabetes is even harder. The thing about diabetes and autism is they’re permanent. You’re born with autism, and once you get diabetes, it’s not going away. If you break your leg, people will sympathise, but they know the breakage is only temporary. With diabetes and autism, the sympathy runs out, but you still have the conditions. You still have to be an exception for so many things. Like one time, at a community group, I turned up for a test and I broke down crying because my blood sugar had gone really high. And afterwards, they said they’d have to stop me coming if it happened again. But it wasn’t my fault—and most of the time, my blood sugar was under control. The way people talk about diabetes is like self-sustaining propaganda. They say, ‘You get it because you eat too much sugar or because you’re fat’, and then other people think the same thing and it spreads. On the internet you see a picture of a cute dog, and someone will say, ‘Aw, it’s so cute it gave me diabetes.’ But I haven’t got DOI: 10.4324/9781003056737-9

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type 1 diabetes because of anything I did. Also, adults often assume they know better than me about diabetes, even though I’ve had this condition for nearly half my life. With autism, people tend to infantilise you. Like, there’s a quiet room at school for neurodivergent kids. I used to go there simply because I didn’t have any friends, and they treated us like we were much younger than we were. Or people will tell you not to behave in a way that is autistic, so you think, ‘OK, I won’t do that anymore.’ And then people don’t believe you when you tell them you’re autistic. It’s like you can’t win with them. What would make my life easier is for people to stop and think—not just about themselves, but about everyone else and the true implications of what everyone is doing to each other. Even just for a bit, you know. Charlie is 15 years old and lives in the United Kingdom. Co-author: Lorna Hamilton (York St John University).

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7 DEVELOPING THE RIGHT(S) APPROACH FOR AUTISM Nick Hodge, Patty Douglas, and Bronagh Byrne

How we conceptualise and understand autism is critical to how we respond to it. Within education, there is a long international history of autistic people suffering assaults on their personhood through unwelcome and unwarranted ‘interventions’ that are designed to make them ‘less autistic’ or even ‘cured’ (Botha 2021; Gibson and Douglas 2018). The United Nations Convention on the Rights of Persons with Disabilities (2006) (CRPD) sets out the rights and entitlements of disabled people. It makes explicit the rights and freedoms, such as respect for difference, autonomy, and inclusive education, to which disabled children, young people, and adults are entitled to, in order to enjoy fully enabled lives. Those of us who are educators (teachers and others who support children in schools) within one of the 182 countries that have ratified the CRPD at the time of writing are duty-bound to act in accordance with its conditions and expectations. It is of concern, therefore, that many educators of autistic children remain unaware of the Convention and its requirements. In this chapter, we seek to address this lack of awareness of, and appreciation for, the Convention through an articulation of what the rights of autistic children and young people are and an explication of how the practice of education can be improved through a protection and enablement of these rights. To help us with this discussion, we make use of two research practices that we have found invaluable in reflecting on the everyday workings of education: a politics of wonder and stacking stories. Professional practices often become so habitual that we neglect to examine the concepts and principles that underpin them. We want, therefore, to explore how autism is conceptualised within education and how this impacts the ability of autistic children to claim their rights as enshrined within the Convention.

A Politics of Wonder In The Question of Access (2011), Titchkosky deploys a ‘politics of wonder’ to think more critically about how disabled people are positioned within the widely advocated notion of ‘access’. A politics of wonder is the practice of embracing opportunities to DOI: 10.4324/9781003056737-10

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think about a concept that is very familiar to us in fresh and potentially different ways. Moules (2022, p. 380) describes this practice as maintaining ‘an openness to what is unknown and not anticipated’. It is about asking ourselves questions, such as: What do I think about this phenomenon? Why do I think it is like that? What has informed my thinking about this phenomenon? Does my experience of the phenomenon fit well with what others claim about it? Are there ways to look at this phenomenon differently, and if so, then what do I make of these? Why might others have a different experience of this phenomenon to me? In this chapter, we encourage the reader to employ a politics of wonder to focus on the relationship between autistic children and rights. We hope that this might lead educators to engage with, and so expand awareness of, the CRPD and to new understandings of how a rights-based approach might lead to more inclusive and enabling educational experiences for autistic children. But this leaves the question of how we might enter into a state of wonder. We suggest that one way of doing this is through stacking stories.

Stacking Stories Moules (2022) emphasises the importance and value to professions such as education of careful listening to how people experience the services provided. Moules (2022, p. 380) states that ‘when we listen to find truth in another, we are truly listening to the other’. Moules distinguishes listening to find the truth from what is perhaps a more common, everyday form of listening. This is when we only pay attention to the aspects of another’s experience which fit with our own understandings of the phenomenon. We use the research practice of stacking stories to pay attention anew and enter a state of wonder about how autism is conceptualised in education and to evaluate what this might tell us about the nature and practice of rights for autistic children within supports and service. Stacking stories involves the collation of stories about how people experience a particular phenomenon (Burnett and Merchant 2016). These authors argue that listening for truth is a disciplined, attentive practice that involves looking across and between different accounts to reveal the rhizomatic nature of experience and perception of a shared phenomenon ‘with threads of each (story) appearing in the others, sometimes surfacing, sometimes disappearing from view’ (Burnett and Merchant 2016, p. 267). What this means is that we should pay careful attention to how people report experiencing educational practices in the hope that we may learn something different that challenges our current imaginings of the nature and quality of that practice. For us, one effect of paying attention to shifting stories of autism in the accounts of autistic people, parents, carers, clinicians, educators, and other service providers is that we learn that autism means different things to different people. Autism emerges from these accounts not as the clear, agreed-upon, predictable, measurable, and controllable biological condition located within individuals that it is often presented as. This conceptualisation of disability is often referred to as the individual model of disability. We contrast this with the social relational model of disability in which autism 114

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is constructed as a complex, diverse, contested, dynamic, ephemeral, social reality and abstraction, a ‘social and categorical phenomenon, identity marker and shaper of human possibilities’ (Davies 2016, p. 133). Botha (2021) captures this ephemeral and contested nature of autism and the effects on the children who are subject to the different understandings of autism. They write, ‘Some have described me as . . . the “kind of person with autism who was born to die by suicide anyway” and also as the kind of person with the “easy autism” ’ (p. 2). For this one individual, autism has not only been constructed as an inescapable decider of a terrible fate but also as something easy that should have minimal effect on a person. It is interesting to consider how such competing interpretations might come to be applied to a single person. Through paying careful attention to these varied accounts of how autism is known and experienced, we come, therefore, to recognise autism as a social construct. A key implication of that recognition for educators is that we realise that we need to be conscious of how we position ourselves within the myriad constructions of autism. For how we think about autism will impact how we respond to it. As Moules (2022, p. 381) asserts, ‘when thinking changes, behaviors and practices follow’. How we construct autism will affect whether we think of and refer to pupils as children with autism, where autism is secondary to them being children, or as autistic children, where autism is constructed as critical and fundamental to the very nature and being of children (Botha 2021). It will affect whether we feel an autistic child’s learning is the responsibility of generic teachers or should be in the domain of specialists. And it will inform how we imagine future possibilities for autistic children, whether we think them capable of having aspirations and the potential for success or whether we only foresee a future of limited work opportunities and care regardless of the nature and ability of the child. These are, of course, only examples designed to illustrate the importance and value of coming to know our own position in relation to autism through a politics of wonder and stacking stories as we openly explore our own thinking using different stories of autism to help us with this process. We turn now to identify some of these stories of autism that reveal its varied and contested nature. In doing so, we hope that the reader will reflect on their practice and on which stories are most likely to enable and empower autistic children and which might lead to their marginalisation and exclusion within education. This is a critical enterprise, for, as Botha (2021, p. 1) records, autistic people are continually exposed within everyday professional practice to ‘dehumanizing, objectifying, and violent accounts of autism’. Only in coming to recognise accounts as such might we begin to trouble them.

Stories of Autism It is now over 70 years since Leo Kanner and Hans Asperger told a story of autism and, in doing so, brought it into being as a new medical category and concept: the idea that there is a particular way of being in the world that can be named as autistic (Asperger 1944; Kanner 1943). They categorised autism as a syndrome. To receive a diagnosis of autism, they asserted, a child had to demonstrate through their behaviour a particular set of characteristics, including significant challenges with recognising 115

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and with understanding social rules, communicating with others, and being able to adapt readily to change. Across these 70 years, the nature of autism and our understandings of it have morphed and evolved considerably as autistic people, parents, and professionals have contributed to and challenged these foundational and authoritative stories of autism (Douglas 2013; Waltz 2013). Autism is therefore an ever-changing social construct (Nadesan 2005). To argue this is not to deny someone’s identity as an autistic person if they choose to claim this, or their embodied experiences; it is just to highlight that what is identified, described, valued, and responded to as ‘autism’ is all decided by people engaged in historical contests around knowledge and meaning, and so changes as society evolves. For example, there are people today who identify as autistic who are unlikely ever to have been so identified by Kanner and Asperger, but as a society, we have come to think differently about autism. Although some things change, others persist more stubbornly. Some of the consequences of diagnosis remain. Being assigned the ‘label’ of autism, or as some people might prefer it framed, being recognised as autistic, continues to result in ableist effects, such as being othered, set apart, and/or spotlighted as fundamentally different in some way to those who have not been categorised/do not identify as autistic (Parsloe 2015). Douglas et al. (2021), on the Re•Storying Autism multimedia storytelling project, work with the idea that releasing a proliferation of stories about autism into the world unsettles the dominant deficit story of autism and opens space to imagine practice anew. Each maker brings a different viewpoint to their story of autism. It might be a personal one of growing up autistic within a world that feels alien and unsupportive. It might be a story of coming to adulthood as an autistic activist celebrating autism as a valued, joyful, and empowered identity. The story might be of a parent critically reflecting on their initial search for a cure or an intervention that might have helped their child escape what they perceived as the disabling and unwanted clutches of autism. Or perhaps of a parent who has found community and a valued sense of purpose with parents of other autistic people. The stacking of stories reveals the textured and contested nature of autism; some stories enable and empower autistic children and adults as citizens, whilst others dehumanise them through a reduction of personhood and lead to a denial of their right to be included in the category of ‘the human’ and their rights as human beings (Goodley 2020; Goodley and Runswick-Cole 2012; Smith 2016). In order to understand what a particular educational ‘approach’, ‘therapy’, or ‘intervention’ might mean for a child who has attracted a diagnosis of autism, we need first to recognise in which story the way of working has been constructed. Stories of and about autism—both affirming and deficit-oriented ones—are told across the world, and yet, it is the neurodevelopmental story generated and exported by the Global North that has assumed authority over ‘the truth’ of autism. We share here a number of alter stories from a variety of geopolitical locations across the Global South and North, not to confirm this ‘truth’, but to stack stories and underscore our point that autism is a complex phenomenon wrapped up in struggles around power, for which lives count as fully human, including access to rights. In Brazil, for example, autism has traditionally been constructed as a problem of the mind that requires treatment through psychoanalysis and psychiatry. But this story is now 116

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being challenged by scholars and activists with new tales of neurological difference and the assertion of rights (Ortega, Zorzanelli and Rios 2016). In Sweden, autism is a story of ways of being that offer a challenge and opportunity to service systems to be creative in enabling independent living and employment (O’Dell et al. 2016). In Aotearoa/New Zealand, a Māori understanding of autism, or takiwātanga, has emerged as a story of alter relationships to space and time as well as the centrality of whānau (family) and spirituality (Bevan-Brown 2013; Tupou et al. 2021). In Turkey, autism is a neurobiologically induced abnormality that often results in stigma for children and their families (Yazgan 2015). In Ethiopia and Nepal, the story of stigma is told again, as autism is often framed as a curse and a marker of the supernatural (Tilahun et al. 2016; Heys et al. 2017). In Somalia, there is no story of autism, only for those children of Somali heritage who are born in the countries of the Global North (Decoteau 2017). And in Canada, some Indigenous communities, such as the Cowessess First Nation in Saskatchewan, are reclaiming the language of autism and disability back from settler colonialist knowledge systems. On a Saulteaux view of autism, for example, Chief Cadmus Delorme of the Cowessess First Nation said, ‘When children have those special gifts, they actually have a unique relationship with the Creator, with the spiritual world. . . . A child who has a very unique perspective on the world, we can actually learn a lot from them’ (Giesbrecht 2019, para. 13). And so the stacking of these stories across geopolitical space and place exposes how location, environment, and cultural practices play fundamental roles in the socio-cultural construction of autism (Hewitt et al. 2013; Miller-Gairy and Mofya 2015). The Diagnostic and Statistical Manual of Mental Disorders version 5 (DSM-V—APA 2013) is a tool that influences diagnostic processes across the Global North. It is increasingly exported by international bodies, such as Autism Speaks and the World Health Organization, from the Global North to the Global South. DSM-V tells a story of autism as deficit, of not being able to, of lack in social-emotional reciprocity, deficits in non-verbal communication and with developing, maintaining, and understanding relationships. Davies (2016, p. 144) suggests that our first collective response whenever any child is framed in this way might be to exclaim, ‘How rude’, as such an ableist conceptualisation of childhood effectively ‘authorises the dehumanisation of people with autism’ by placing some people outside of the personal characteristics that are said to be essential to being human. Botha (2021, p. 3) records, too, how, as an autistic person studying the topic of autism, what they were learning often seemed at odds with their own experience of autistic people: ‘I would learn these two-dimensional, seemingly objective accounts of autistic people on one day, and on the next work with these threedimensional autistic children who were altogether more complicated, and more real.’ One example of how this story of childhood can limit the life experiences of autistic children is captured within the work experience of one of the authors of this chapter, Nick, from when he was a teacher of young autistic children within a specialist setting in the UK in the mid-1980s. Some years after Nick had left the school, he was told by the headteacher that Nick had changed practice by working with the children in groups and not just individually. But on reflection, Nick believes that this was through accident rather than design. He arrived at the school very new 117

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to teaching and with the belief that all children can and should learn from and with each other. Nick had not yet been inculcated into the dominant educational story of autism, even more prevalent at that time, in which autistic children were presented as unable to access the social and only able to learn in isolation. But in Nick’s classroom, a different story was in play, one in which teachers and pupils all worked as a team. In doing so, they experienced some of the pleasures and frustrations that we usually encounter when as humans we work together. Within that classroom, autism was a story of community and of supporting each other through the adventure of being human. It was not a story of deficit, lack, other, and alone. However, the dominant story of deficit and lack is ingrained and powerful. It has remained tenacious in its resistance to challenge. It is more than 20 years now since Gray and Attwood (1999) demonstrated how the diagnostic criteria for autism could be re-storied in ways that would be more empowering and enabling for those receiving and/or living with the diagnosis. They wonderfully and radically, at that time, critiqued the disabling framings of Asperger’s syndrome that were captured in the DSM-IV (APA 1994), the American diagnostic tool and precursor to DSM-V described previously that was highly significant in declaring what autism is. Attwood and Gray disrupted the deficit-led construction of Asperger’s syndrome as set out in DSM-IV by mutating what were held to be disordered and unwanted ways of being and presenting these instead as positive attributes. For example, they declared that people could only earn the right to be discovered to be ‘Aspie’ (our use of bold) if they could demonstrate that they met such criteria as the ability to form peer relationships characterised by absolute loyalty and impeccable dependability and express ways of being free of sexist, ageist, or cultural biases and through being always prepared to accept others at face value. We commend the positive nature of the story of Attwood and Gray. At the same time, we worry that they do not capture and represent the challenges that many people who identify as autistic encounter and articulate within their daily lives. So we would add to the stack our own story of autism: autism as a challenge to come to know and/or apply customary social rules and practices if these are not made clear to you. It can be a challenge to access the dominant communication system (i.e., speaking) if this is not the one that you use yourself, and it can be a challenge to adapt quickly to unexpected and enforced change when you had something different planned. What this story does, too, is to represent autism as something more than a set of personal characteristics, either formulated as deficit by the DSM or as positive by Gray and Attwood. If autism is made an issue only of the person, then, as we noted earlier, this story is sometimes known as the individual or medical model of disability (Oliver 1983). The problem with this story is that because autism is located in the individual, responsibility for change is then placed only on the individual alone (Albrecht, Seelman and Bury 2001). An educational approach that is formulated within the individual model of disability is likely to conceptualise autism as an issue of, about, and for the child. The child is deemed to be broken in some way and in need of being fixed. If an approach is informed by the social relational model of disability that begins from the assumption that difference is basic to the world, then it 118

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will understand autism as a site of tension in which the child’s rights, freedoms, and aspirations will be threatened by the disabling principles, policies, and practices of the state. These two models of disability reveal themselves therefore to be critical influencers upon the nature and exercise of autistic children’s rights. In stories of autism, this distinction between these models of disability is a critical one. If we return to our earlier claim that how we conceptualise autism affects how we respond to it, then we need to reflect on where we position ourselves within these competing models of disability and evaluate how that then impacts on how we practice education with autistic children. We argue here that the educational practices that align with the social relational model will most likely respect the rights of autistic children and so enable and empower them, whereas, approaches based upon the individual model are predisposed to abrogate the rights of autistic children who, as adults, report on their experience of these approaches as abhorrent, demeaning, and traumatic and which result in long-lasting disabling effects (Botha 2021; Kupferstein 2018). The concern with individual model approaches is that their primary focus is on changing the fundamental nature of an autistic person. This includes teaching skills specifically so that an autistic person may then present as more ‘normal’ than they might if they interacted in the way of being that feels natural to them. An example is the insistence that an autistic child always makes eye contact and/or that they use a typical form of communication even when this is not the way that the child intuitively and effectively communicates. Into this category we might then place applied behaviour analysis (ABA) (Baer et al. 1968), an approach that seeks to modify the behaviour of autistic children and adults to make them as ‘normal’ as possible (Gibson and Douglas 2018; Kupferstein 2018; Shyman 2014). We might also include any educational practices where an autistic child is expected to change their behaviour to fit in with general classroom expectations and culture without prior consideration of what the cost of this might be to a child emotionally. A social relational model approach is more accepting of the ways of being in the world demonstrated by autistic people. Rather than focus on trying to change a person fundamentally, a social relational model approach seeks to change the physical and social environments around autistic people so that these become more accessible. While we do not engage in endorsement, TEACCH (Schopler and Reichler 1971), SCERTS (Prizant et al. 2006), and Options (Kaufman 1976) are classic examples of these. In this category we also place universal design for learning (UDL) (CAST 2018) and the right to alternative and augmentative communication (AAC) (Light and McNaughton 2008) for autistic students (see text box). Such approaches focus on transforming barriers and opening access in educational environments, and many are endorsed by autistic-led organisations (see Autistics for Autistics 2019). They begin from the assumption that different ways of learning and being are the norm, that all people can learn, and that access to education is a right. In fact, universal design is set out as a general obligation in Article 4 of the UNCRPD. We recognise that we may be making an overly crude distinction between the individual and social relational models of disability. Within what appears to be an individual model approach, there can be elements which could be categorised as meeting the 119

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requirements of the social relational model of disability. For example, changing the environment to make it more accessible and enabling for an autistic person but, at the same time, expecting the autistic person to change how they behave to better meet social expectations. The distinction between a mainly individual model approach and a social relational model approach is useful to us here, though, as we claim that approaches that are based upon the social relational model of disability will be more respectful of the rights of an autistic child. For us, this is a critical point as we argue that recognition and protection of the rights of autistic children is paramount and should override all other concerns. And so we suggest that those seeking to evaluate an approach or method of support for autistic children should always assess to what extent this protects and enables the rights of the child. In doing so, we need to know what the rights of autistic children are and how they might be exercised.

The Nature and Exercise of Rights In developing a rights-based approach for autism, it is necessary to take a step back to consider the paradigm in which rights-based concepts and standards are located and within which stories of autism can be situated. The question of whether or not autistic children actually have rights is, on the face of it, addressed through the existence of two key instruments: the CRPD and the United Nations Convention on the Rights of the Child (1989) (CRC). A much larger philosophical question is whether or not autistic children—like disabled children generally—are capable of having and exercising rights. Proposed answers to this question reveal further stories about autism and responses to it. There has been longstanding debate among rights theorists as to whether, firstly, children can have rights (Archard 2018), and secondly, whether disabled people can have rights (Cuenca Gómez 2015). The debate stems from the fact that rights are seen to derive from one of two theories: will theory and interest theory (Edmundson 2004). Under the will or choice theory, rights are understood to be dependent on the capacity of the rights-holder to make choices in exercising their rights. To have a right, therefore, is to have the power to enforce the duty associated with the right (Hart 1973; Steiner 1994; Sumner 1987). Under this formulation, children and disabled adults—including autistic children—cannot have rights, as it is assumed that they do not have the capacity to exercise choices, to make complex decisions, or to choose between various options unless an exception is made for them to have their choices exercised by others. This aligns with traditional deficit-based stories of autism that have viewed disabled childhoods as constitutive of diminished capability and seemingly bereft of any meaningful capacity and agency until they are either ‘cured’ or ‘grow up’ (Byrne 2012). In contrast, the interest theory of rights views a right as the protection of an interest of sufficient importance to impose certain duties on others to enable the rights-holder to enjoy the interest in question (Archard 2018; Raz 1984). Eekelaar (1986), for example, argued that children have interests that are independent of adults’ interests. He classifies these interests as basic (care), developmental (education), and autonomy (freedom to choose own lifestyle). While these philosophical questions were answered to 120

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some degree through the disability-specific provisions under the CRC (Article 23), this remained grounded in a welfarist approach to ‘rights-talk’ and a medicalised approach to disability with emphasis on ‘special care’, ‘treatment’, and ‘rehabilitation’ (Byrne 2012). The welfarist approach to rights-talk has been countered by the adoption of the CRPD, which is underpinned by a social relational model of disability and indicative of a ‘revolutionary paradigm shift’ (Celik 2017). Article 1 of the CRPD recognises disabled people to ‘include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others’, while Article 7 establishes that disabled children have the right to express their views on all matters affecting them, for these views to be given due weight, and to be provided with ageand disability-appropriate support in expressing their views (see Byrne 2012). Autonomy and dignity are at the fore in the CRPD. A rights-based approach grounded in the CRPD focuses primarily on promoting respect and dignity, facilitating agency and autonomy, and removing barriers to enable full participation in society. It is especially noteworthy that duty-bearers also have an obligation to raise awareness throughout society through awareness-raising programmes, including in the education system, and, through these, to foster respect for the rights and dignity of disabled people (Article 8, CRPD). The social relational approach to rights as expressed in the CRPD is the point from which we build a right(s) approach to autism. Keeping in mind a politics of wonder and stacking stories, we extend the social relational model/ CRPD version of rights to more fulsomely embrace difference, relationality, and interdependence as fundamental to the world. We seek also to develop the right(s) approach to autism as something informed by, but also more than, the theoretical. We envisage it as a tool for practice that will support schools and other organisations in recognising and enabling the rights of autistic children.

The Right(s) Approach for Autism Those of us who share our knowledge and understanding of the construction and practice of autism in development sessions with practitioners often become used to seeing the same faces attending these events. Even those practitioners who have completed lengthy and detailed academic courses on autism can still be found sitting in the front row of a ‘What Is Autism?’ seminar. This is surprising when the delegate ought to feel qualified to deliver the seminar rather than just to attend it. Yet they still feel they need to and might learn something different. We suggest that this may happen because of the way in which autism has been storied for over 70 years as a ‘mystery’ (Murray 2012, p. 88). The metaphor of a puzzle has been consistently used to represent autistic people. This conveys the idea that if we could only find the missing piece, then we could release the person from the grasp of autism (McGuire 2012). Strategies such as making a person feel safe and secure in their learning environment, building up an understanding of how and when they learn, and developing lessons around what interests and motivates them just do not feel magical enough to be the puzzle solvers that unlock 121

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the mysteries of autism. Therefore, we suggest that practitioners continue to search, hoping that each new seminar will reveal the wonder intervention that will fundamentally change the nature and being of the autistic person and restore them to ‘normal’. Providers of services for autism have promoted and capitalised on this notion of the miracle intervention to make money, and so a huge industry has grown up around the notions of eradicating autism and curing, or at least making as normal as possible, autistic people. The global autism therapeutic market size in 2018 was worth 3,293.0 million dollars and has been predicted to rise to 4,612.1 million dollars by 2026 (Fortune Business Insight 2019). To maintain the demand and to secure a place in the market, new interventions or treatments are developed and promoted. Many of these interventions attempt to maximise their grab of the market share by claiming to be the right approach for autism. But this raises the question of whether there is, or ever can be, a right approach for autism. In response, we argue here that it is not so much a case of finding the right approach as developing the right(s) approach for autism. We suggest that a rights-based approach to autism constitutes that missing element. In addition to reaffirming and expanding on substantive rights such as the right to inclusive education, the CRPD places disabled people, and therefore autistic children, at the forefront of developing, implementing, and monitoring appropriate solutions, something that has been missing from many existing stories of autism. Autistic self-advocacy organisations like the Autistic Self-Advocacy Network have argued this for some 30 years. Article 4(3) of the CRPD requires duty-bearers to involve disabled people, including autistic children, young people, and adults, in decision-making processes, including those decisions relating to the implementation and monitoring of legislation and policies. This is also reinforced by Article 7(3), as stated earlier. With the hope that this will make the CRPD more accessible for educators, we offer here a framework of rights based, but also elaborating, upon the CRPD. We orient to our rights framework through a politics of wonder that surfaces unquestioned and ableist assumptions about the normative human that currently underpin exclusionary educational practice. Our framework is also ignited by insights from stacking stories: difference and interdependence are basic to the world. We present the framework here in what we intend to be an accessible list format for educators to share and discuss within their settings.

The Framework The first and, perhaps, most critical element of the framework is to recognise the humanity of autistic children and the right to have rights as recognised by both the CRC and CRPD (Arendt 1973). This requires us to always remember that it is a thinking and feeling child with whom we are engaging. What we do and say with and to that child communicates to them how we frame their place in the world and the value that we attribute to this. The second element of the framework is to promote respect for the inherent dignity of autistic children at all times, as established by Article 23 UNCRC and a general principle under Article 3(a) CRPD. So often, autistic children are 122

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denied the privacies and basic respects that are afforded to non-autistic children. They may experience being watched and analysed, the intimacies of their lives discussed by adults, often within their own hearing. Autistic children are often assigned an adult to sit alongside them in class and are perhaps physically restricted and constrained within view of those around them. What they have to say may just be devalued and dismissed as meaningless and obsessive utterances. The third element is to protect autistic children from the violence of intrusive interventions, bullying, and abuse. This is made clear through Articles 15 and 16 of the CRPD as well as Article 19 of the CRC. Many autistic children report high levels of bullying from peers, and even from some of the adults charged with supporting them (Humphrey and Hebron 2015). As noted earlier, there is also the long and continuing tradition of autistic children being subject to harmful and intrusive socalled interventions. The Westminster Commission on Autism (2018, p. 6), in compiling a report on the nature and range of harmful interventions for autism, found that autistic people had been offered treatments such as crystal therapy, ear candles, vitamins, spiritual intervention, aromatherapy, chelation, juice plus diet, hyperbaric oxygen therapy, exorcism, stem-cell transplants, exposure therapy (including slapping), rerum, acupuncture, DAN (defeat autism now) therapy, MMS (bleach), turpentine and many more. Autistic self-advocates who have been subject to these abusive practices recount how painful, terrifying, and reductionist these can be (The Westminster Commission 2018). It is critical, therefore, that we maintain our resistance to any way of engaging with autistic children that involves an attack on their way of being. Instead, we should follow the fourth element of the framework: Value children for who they are and support them to be the best ‘me’ that they can be rather than trying to make them into a different, non-autistic child. This is reflective of the CRPD’s general principles of respect for difference and acceptance of disabled people as part of human diversity and humanity (Article 3(d)) alongside respect for the evolving capacities of disabled children (Article 3(h)). The fifth element of the framework is to commit to knowing autistic children’s rights within the CRPD. In doing so, we can then use the Convention to benchmark any approach that we are considering using in support of autistic children. Article 4(i) requires states parties to promote the training of professionals and staff on the rights contained therein, while Article 9 requires the adoption of ‘immediate, effective and appropriate measures’ to raise awareness and foster respect for rights as well as combat stereotypes and promote awareness of the positive capabilities and contributions of disabled children, young people, and adults. If we have concerns that an approach will infringe a child’s rights, then we will know that this is not the correct approach to use. In support of us coming to know children’s rights, we also need to observe the sixth element. Continually reflect on, assess, and debate practice in relation to the promotion and protection of rights. Infringements of rights can be very subtle, and 123

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effective implementation and monitoring can be challenging. We might decide, for example, on what a child is going to do that day or how their environment is going to be constructed without consulting them in any way. In doing so, we may well be neglecting the seventh element of the framework: Promote and facilitate the right of children to participate in the construction of their own lives. This is clearly set out in Article 7(3) of the CRPD as well as Article 12 of the CRC and includes providing the child with any age- and disability-appropriate support they require to participate in decision-making processes. An example of the unconscious ways in which we sometimes infringe rights is in how we become used to taking a child by the arm to manoeuvre them in a particular direction even when they appear to want to go somewhere else. The best interests of the child should always be a primary consideration in actions concerning children (Article 7(2) CRPD, Article 3 CRC). These are complex decisions that require full and careful consideration. We need, therefore, always to keep rights in the forefront of our thinking and to remain open and reflective in relation to our practice. Critical to this is the eighth element of the framework: Learning to listen to and observe the meanings children make of their experience, and to give these due weight, as emphasised by Article 7(3) of the CRPD and Article 12 of the CRC. As reflective practitioners intending to recognise, enable, and protect rights, we need continually to be evaluating how we think autistic children are experiencing what we are doing with them. We need to assess whether they are comfortable with this and welcome the engagement. If we feel that this might not be the case, then we need to understand why that may be so and then change what we are doing to ensure the child is comfortable with it.

Conclusion In this chapter, we have argued for the critical importance and value of naming autism and critiquing what is produced and enacted in its name. We have suggested that it is helpful to think of autism as being constructed through stories rather than its only being a definite and unambiguous biological entity. We have used a politics of wonder and stacking stories to do this re-storying work. This methodology arguably makes a distinct contribution to a rights-based approach to disability by acting as a lens through which rights can be better understood and implemented relationally. We have also argued for the need to evaluate the stories of autism, as some enable autistic children whilst others limit and devalue them. We have urged caution over stories framed within an individual model of disability that position autism only as a problem of the child and the child’s failure to achieve ableist norms of development. We argue that stories such as these are rarely reflective of children’s rights. In helping us locate and embrace stories of autism that are more enabling to children, we have offered here a framework of rights that can be used by educators to support their evaluations of educational approaches and ways of being with autistic children. This framework is based on the CRPD and so has been developed by disabled people themselves. Our approach reflects a social relational model of disability that re-situates competence, 124

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dignity, and autonomy not as attributes or capacities located within individuals but as constituted within relationships of care and community. This advancement of a socio-relational approach in a rights-based approach to autism is a second major contribution of the chapter. We ask all those supporting autistic children to pledge to commit to and uphold this framework. The eight elements need now to be developed and fleshed out through the collation of examples of practice that enable them. Through engaging with the framework in this way as reflective and critical practitioners within a community of, learning then we are certain to develop the right(s) approach for autism.

Developing the Right(s) Approach for Autism An educational approach that is formulated within the individual or medical model of disability is likely to conceptualise autism as an issue of, about, and for the child. The child is deemed to be broken in some way and in need of being fixed. See Oliver (1983) Social Work With Disabled People for more. Rather than focus on trying to change a person fundamentally, educational approaches using a social relational model seek to change the physical and social environments around autistic people so that these become more accessible. See Lawson and Beckett (2021) The Social and Human Rights Models of Disability: Towards a Complementarity Thesis (tandfonline.com) The full text of the UN Convention on the Rights of Persons with Disabilities can be found here Convention on the Rights of Persons with Disabilities | OHCHR Approaches that align with a social relational model and right(s) approach: Universal Design for Learning is ‘education design and practice’ that begins from the assumption that all bodies and minds are expected and welcome. See, for example, CAST https://www.cast.org Augmentative and Assistive Communication refers to a range of means to support children and people who do not use speech to communicate. See, for example https://communicationfirst.org/listen/ The SCERTS Model (Social Communication, Emotional Regulation, and Transactional Support) focuses on family and community in creating access in the environment, including communication. See https://scerts.com/ For other helpful resources see: Re•Storying Autism in Education www.restoryingautism.com Autistics United Canada https://www.autisticsunitedca.org Autistic Self-Advocacy Network https://autisticadvocacy.org Reframing Autism https://reframingautism.org.au

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References Albrecht, G., Seelman, K. D. and Bury, M. 2001. Introduction: The formulation of disability studies. In G. Albrecht, K. D. Seeman and M. Bury (eds.), Handbook of disability studies. London: Sage, pp. 1–10. APA (American Psychiatric Association). 1994. Diagnostic and statistical manual of mental disorders: DSM IV. Arlington, VA: American Psychiatric Association. APA (American Psychiatric Association). 2013. Diagnostic and statistical manual of mental disorders: DSM 5. Arlington, VA: American Psychiatric Association. Archard, D. W. 2018. Children’s rights. In E. N. Zalta (ed.), The Stanford encyclopedia of philosophy. Winter Edition. [online] Stanford, CA: Metaphysics Research Lab, Stanford University. [Accessed on 21 January 2021] Available from: https://plato.stanford.edu/ entries/rights-children/ Arendt, H. 1973. The origins of totalitarianism. New York: Harcourt Brace. Asperger H. 1944. ‘Autistic psychopathy’ in childhood. In U. Frith (ed.), Autism and Asperger syndrome. Cambridge: Cambridge University Press, pp. 37–92. Autistics for Autistics. 2019. The new gold standard is inclusion: A4A’s recommendations for reforming autism policy in Ontario. [online] [Accessed on 19 December 2021] Available from: https://a4aontario.com/wp-content/uploads/2019/11/Ontario_Recommendations_Inclusion-is-the-New-Gold-Standard.pdf Baer, D. M., Wolf, M. M. and Risey, T. R. 1968. Some current dimensions of applied behavior analysis. Journal of Applied Behavior Analysis 1(1), pp. 91–97. Bevan-Brown, J. 2013. Including people with disabilities: An indigenous perspective. International Journal of Inclusive Education 17(6), pp. 1–13. Botha, M. 2021. Academic, activist, or advocate? Angry, entangled, and emerging: A critical reflection on autism knowledge production. Frontiers in Psychology28, pp.727542–727542. Burnett, C. and Merchant, G. 2016. Boxes of poison: Baroque technique as antidote to simple views of literacy. Journal of Literacy Research 48(3), pp. 258–279. Byrne, B. 2012. Minding the gap: Children with disabilities and the UN convention on the rights of persons with disabilities. In M. Freeman (ed.), Law and childhood studies, vol. 14, Oxford: Oxford University Press, pp. 419–437. CAST. Universal Design for Learning (UDL) guidelines version 2.2.2018. [online] [Accessed on 5 April 2022] Available from: cast.org Celik, E. 2017. The role of CRPD in rethinking the subject of human rights. The International Journal of Human Rights 21(7), pp. 933–955. Convention on the Rights of Persons with Disabilities. 2006. [online] [Accessed on 21 January 2021] Available from: https://treaties.un.org/doc/publication/UNTS/Volume%202515/ v2515.pdf Convention on the Rights of the Child. 1989. [online] [Accessed on 19 December 2021] Available from: https://treaties.un.org/doc/Publication/UNTS/Volume%201577/v1577.pdf Cuenca Gómez, P. 2015. Disability and humans rights: A theoretical analysis. The Age of Human Rights Journal 4, pp. 34–59. Davies, K. 2016. How rude? Autism as a study in ability. In K. Runswick-Cole, R. Mallett and S. Timimi (eds.), Re-thinking autism: Diagnosis, identity and equality. London: Jessica Kingsley, pp. 132–145. Decoteau, C. L. 2017. The ‘western disease’: Autism and somali parents’ embodied health movements. Social Science & Medicine 177, pp. 169–176. Douglas, P. N. 2013. As if you have a choice: Autism mothers and the remaking of the human. Health, Culture and Society 5(1), pp. 167–81. Douglas, P. N., Rice, C., Runswick-Cole, K., Easton, A., Gibson, M. F., Gruson-Wood, J., Klar, E. and Shields, R. 2021. Re-storying autism: A body becoming disability studies in education approach. International Journal of Inclusive Education 25(5), pp. 605–622.

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Developing the Right(s) Approach for Autism Edmundson, W. 2004. The nature of rights: ‘choice’ theory and ‘interest’ theory. In An introduction to rights. Cambridge: Cambridge University Press, pp. 119–132. Eekelaar, J. 1986. The emergence of children’s rights. Oxford Journal of Legal Studies 6, pp. 161–182. Fortune Business Insights. 2019. Autism spectrum disorder therapeutics market size, share and industry analysis by type (Autistic Disorder, Asperger Syndrome, Pervasive Developmental Disorder, Others), by treatment type (Communication, Behavioral Therapies, Drug Therapies), and Regional Forecast 2019–2026. Fortune Business Insights. [online] [Accessed on 21 January 2021] Available from: www.fortunebusinessinsights.com/industry-reports/ autism-spectrum-disorder-therapeutics-market-101207 Gibson, M. F. and Douglas, P. 2018. Disturbing behaviours: Ole Ivar Lovaas and the queer history of autism science. Catalyst: Feminism, Theory, Technoscience 4(2), pp. 1–28. Giesbrecht, L. 2019. Cowesses launches first indigenous-centred autism research project. Regina Leader Post. [online] 24 May. [Accessed on 21 January 2021] Available from: https://leaderpost.com/news/saskatchewan/cowessess-launches-first-indigenouscentred-autism-research-project Goodley, D. 2020. Disability and other human questions. Bingley: Emerald Publishing. Goodley, D. and Runswick-Cole, K. 2012. Reading rosie: The postmodern disabled child. Educational & Child Psychology 29(2), pp. 53–66. Gray, C. and Attwood, T. 1999. The discovery of “Aspie”: Criteria by Attwood and Gray. The Morning News 11(3), pp. 1–7. [online] [Accessed on 21 January 2021] Available from: https://carolgraysocialstories.com/wp-content/uploads/2015/10/Fall-1999-ISSUE.pdf Hart, H. L. A. 1973. Bentham on legal rights. In A. W. Simpson (ed.), Oxford essays in jurisprudence. 2nd series. Oxford: Clarendon Press, pp. 171–201. Hewitt, A., Gulaid, A., Hamre, K., Esler, A., Punyko, J., Reichle, J. and Reiff, M. 2013. Minneapolis Somali autism spectrum disorder prevalence project: Community report 2013. [online] Minneapolis, MN: University of Minnesota, Institute on Community Integration, Research and Training Center on Community Living. [Accessed on 21 January 2021] Available from: https://ici.umn.edu/products/docs/somali_minneapolis_autism_report.pdf Heys, M., Alexander, A., Medeiros, E., Tumbahangphe, K. M., Gibbons, F., Shrestha, R., Manandhar, M., Wickenden, M., Shrestha, M., Costello, A., Manandhar, D. and Pellicano, E. 2017. Understanding parents’ and professionals’ knowledge and awareness of autism in Nepal. Autism 21(4), pp. 436–449. Humphrey, N. and Hebron, J. 2015. Bullying of children and adolescents with autism spectrum conditions: A ‘state of the field’ review. International Journal of Inclusive Education 19(8), pp. 845–862. Kanner, L. 1943. Autistic disturbances of affective contact. The Nervous Child 2(2), pp. 217–250. Kaufman, B. N. 1976. Son rise. New York: Warner Books. Kupferstein, H. 2018. Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Advances in Autism 4(1), pp. 19–29. Light J., McNaughton D. 2008. Making a difference: A celebration of the 25th anniversary of The International Society for Augmentative and Alternation Communication. Augmentative and Alternative Communication 24(3), pp. 175–193. McGuire A. E. 2012. On the ‘puzzle of autism’ and the incompleteness of autism awareness. Journal on Developmental Disabilities 18(1), pp. 96–100. Miller-Gairy, S. and Mofya, S. 2015. Elements of culture and tradition that shape the perceptions and expectations of Somali refugee mothers about autism. International Journal of Child and Adolescent Health 8(3), pp. 335–349. Moules, N. 2022. Hermeneutic practice: What Gadamer has to teach nursing. In T. George and G.-J. van der Heiden (eds.), The Gadamerian mind. Abingdon: Routledge, pp. 376–387. Murray, S. 2012. Representing autism: Culture, narrative, fascination. Liverpool: Liverpool University Press.

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Nick Hodge, Patty Douglas, and Bronagh Byrne Nadesan, M. H. 2005. Constructing autism: Unravelling the ‘truth’ and understanding the social. London: Routledge. O’Dell, L., Bertilsdotter Rosqvist, H., Ortega, F., Brownlow, C. and Orsini, M. 2016. Critical autism studies: Exploring epistemic dialogues and intersections, challenging dominant understandings of autism. Disability & Society 31(9), pp. 166–179. Oliver M. 1983. Social work with disabled people. Basingstoke: Macmillan. Ortega, F., Zorzanelli, R. and Rios, C. 2016. The biopolitics of autism in Brazil. In K. Runswick-Cole, R. Mallet and S. Timimi (eds.), Re-thinking autism: Diagnosis, identity and equality. London: Jessica Kingsley, pp. 67–89. Parsloe, S. M. 2015. Discourses of disability, narratives of community: Reclaiming an autistic identity online. Journal of Applied Communication Research 43(3), pp. 336–356. Prizant, B. M., Wetherby, A. M., Rubin, E., Laurent, A. C. and Rydell, P. 2006. The SCERTS model: A comprehensive educational approach for children with autism spectrum disorders. Baltimore, MD: Paul H Brookes. Raz, J. 1984. Legal rights. Oxford Journal of Legal Studies 4(1), pp. 1–21. Schopler, E. and Reichler, R. J. 1971. Parents as co-therapists in the treatment of psychotic children. Journal of Autism and Childhood Schizophrenia 1, pp. 87–102. Shyman, E. 2014. Besieged by behavior analysis for autism spectrum disorder: A treatise for comprehensive educational approaches. Minneapolix, MN: Lexington Books. Smith, J. C. 2016. The embodied becoming of autism and childhood: A storytelling methodology. Disability & Society 31(2), pp. 180–191. Steiner, H. 1994. An essay on rights. Oxford: Blackwell. Sumner, L. W. 1987. The moral foundation of rights. Oxford: Clarendon Press. Tilahun, D., Hanlon, C., Fekadu, A., Tekola, B., Baheretibeb, Y. and Hoekstra, R. A. 2016. Stigma, explanatory models and unmet needs of caregivers of children with developmental disorders in a low-income African country: A cross-sectional facility-based survey. BMC Health Services Research 16, p. 152. Titchkosky T. 2011. The question of access: Disability, space, meaning. Toronto: University of Toronto Press. Tupou, J., Curtis, S., Taare-Smith, D., Glasgow, A. and Waddington, H. 2021. Maori and autism: A scoping review. The International Journal of Research and Practice 25(7), pp. 1844–1858. Waltz, M. 2013. Autism: A social and medical history. New York: Palgrave. Westminster Commission on Autism. 2018. A spectrum of harmful interventions for autism: A short report. [online] [Accessed on 21 January 2021] Available from: https://westminsterautismcommission.files.wordpress.com/2018/03/a-spectrum-of-harmful-interventionsweb-version.pdf Yazgan, Y. 2015. Turkey and autism. In F. R. Volkman (ed.), Encyclopedia of autism spectrum disorders. New York: Springer, pp. 1–4.

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8 POVERTY, DEPRIVATION, AND DISABLED CHILDREN’S RIGHT TO CITIZENSHIP Edgar Galea-Curmi We are living a life of self-denial, forced to renounce ourselves constantly, not so much because of Francesca’s autism, but primarily because our limited resources are focused on trying to compensate for the many barriers Francesca experiences in living her childhood . . . in accessing education, health, sports, leisure and the pleasures and joys of being a child. And I just don’t have the time to increase our household income by working more hours. This middle-class parent’s brief testimony patently articulates the disabling consequences of limited or diminished resources on the family’s ability to secure for their child the quality of life commonly acceptable in her community. Indeed, irrespective of whether or not a long-term impairment characterises the life of a household, living day in day out on low income limits any child’s ability to participate fully in the quality of life considered typical in one’s particular context (Duncan et al. 2012; Lesner 2018). One may argue that poverty shapes the life of whoever experiences it; poverty is disabling to anyone because it limits one’s choices, one’s freedom, and one’s capability to participate fully in the responsibilities and rights of citizenship (Sen 2004; 2005). When a household includes a child with long-term impairment, the balance between the household’s earning potential and expenditure needs is likely to be negatively affected (Cullinan 2015; Dobson, Middleton and Beardsworth 2001; Shahat and Greco 2021). Living with the impairment contributes to increased vulnerability to deprivation (Batavia and Beaulaurier 2001; Heikkilä, Katsui and Mustaniemi-Laakso 2020; Traustadóttir and Rice 2012), which contributes to the resultant disabling effect on the child and the household. Poverty and deprivation are common additional disabling barriers a child with impairment experiences, a reality that intersects with, and intensifies, other disabling barriers. Poverty and deprivation, therefore, fall within Oliver’s (1996, p. 22) DOI: 10.4324/9781003056737-11

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definition of disability as ‘something imposed on top of our impairments’, leading to disabled persons being ‘unnecessarily isolated and excluded from full participation in society’. This understanding of poverty focuses on the disabling impact of poverty; it is the limitation resulting from society that overlooks the costs of living with impairment while intensifying such costs through its disabling barriers. Oliver further argues that disabled persons can only enjoy full citizenship if they enjoy the right ‘not to be poor or live in fear of poverty’ (p. 47). Poverty and impairment are mutually constitutive; impairment shapes poverty, and poverty shapes impairment, particularly when poverty is long-term (Mont 2019; Yeo and Moore 2003). Elwan (1999, p. i) argued that ‘disability adds to the risk of poverty, and conditions of poverty increases the risk of disability’. Along with contributing to maternal malnutrition and disease, poverty negatively affects the child’s brain and increases likelihood for various chronic illness; complicates social, emotional, behavioural, and physical development; gives rise to and increases achievement gaps; and consequently increases the risk and severity of impairment (Elwan 1999; Evans et al. 2012; Murphey and Redd 2014). Correspondingly, children experience their impairment according to their family’s resources; for instance, Sherry (2016) argues that diagnosis inequalities can have long-term effects on the trajectory of the impairment, including delayed diagnosis or misdiagnosis, access to social and education services and supports, along with the subjective experience on the child and the family. Poverty and deprivation shape the experience of impairment itself, increasing the severity of the impairment; the severity of impairment augments the vulnerability to poverty and relative deprivation, and poverty and deprivation intensify the disabling barriers experienced because of impairment. This chapter considers the intricate relationship between poverty and disability, focusing on children, arguing that poverty and deprivation are a cause of disability because they shape a child’s impairment, they increase the barriers to living their childhood, they reduce the opportunities for the child to develop their full potential, and they subject the child and their families to a life of limited expectations and increased vulnerability. The terminology used here distinguishes a child’s condition from the societal barriers the child experiences because of the condition; the child with impairment is consequentially a disabled child when, for instance, poverty and relative deprivation constrain the child’s capability for full participation in society. After briefly reviewing the policy context and a conceptual discussion of poverty and disability, research on the link between poverty and disability in childhood is examined. This review tells a story of a distinct disadvantage and restriction, decisively conditioning the disabled child’s capability to enjoy ‘full and effective participation and inclusion in society’ and ‘equality of opportunity’—two key principles of the Convention on the Rights of Persons with Disabilities (2007). It is a limited story because of its context, part of what Grech (2015) rightfully critiques as the inadequacies of studies emanating from the Global North, and consequently a story that is far from representative of other continents and the Global South, a story guilty of ignoring the geographical distribution of privilege (Twine and Bradley 2013) and one that is penned from a position of relatively privileged circumstances. 130

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The Transnational Policy Context for Understanding Disability and Poverty The association between poverty, deprivation, and child impairment is a major challenge for public and social policy. Guaranteeing any child living with longterm impairment a quality of life comparable to that of other children requires the fundamental transformation of the conventional fixed mindset that ‘experiencing restriction, social exclusion and impoverished circumstances must be inevitable consequences of living with impairment or chronic ill-health in childhood’ (Read, Blackburn and Spencer 2012, p. 229). The developments in transnational policy since the enactment of the United Nations Convention on the Rights of the Child in 1990 (see Articles 2 and 23), followed by the adoption of the Convention on the Rights of Persons with Disabilities (CRPD) in 2007, has shifted the policy framework.

Poverty and the Convention on the Rights of Persons With Disabilities Identifying disability as an ‘evolving concept’, the CRPD positions disability as resulting ‘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 as others’ (Convention on the Rights of Persons with Disabilities 2007, Preamble, para. e). That poverty, in whichever way defined, hinders the full and effective participation in society is self-evident. It is a mainstream concern in any discussion of children and disability because ‘the majority of persons with disabilities live in conditions of poverty . . . recognizing the critical need to address the negative impact of poverty on persons with disabilities’ (Preamble, para. t). Yet, the Convention’s conceptualisation of poverty is ambiguous. Article 28 focuses on the right of disabled persons and their families to an adequate standard of living, including ‘adequate food, clothing and housing, and to the continuous improvement of living conditions’ (Article 28, para. 1), and social protection, including ‘access and affordable services, devices and other assistance for disability-related needs’ (Article 28, para. 2a), ‘poverty reduction programmes’ (Article 28, para. 2b), ‘public housing programmes’ (Article 28, para. 2d), and ‘retirement benefits and programme’ (Article 28, para. 2e). This article is, however, somewhat ambivalent about the role of the state with regards to disability-related expenses. The same article requires measures ‘to ensure access to appropriate services devices and other assistance for disability-related needs’ (Article 28, para. 2b) while obliging ‘assistance from the State with disability-related expenses, including adequate training, counselling, financial assistance and respite care’ (Article 28, para. 2c) for disabled persons and their families living in poverty. The Committee on the Rights of Persons with Disability (Committee), in its General Comment No. 5 on Article 19 (right to independent living), elaborates marginally on what the Committee considers as falling under the provisions of the Convention with regards to poverty and disabled persons (United Nations 2017). 131

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The Committee considered the right to independent living as representing ‘a costeffective mechanism to ensure . . . a reduction in poverty’ (No. 5). Further on, the Committee recognises the critical role of cash transfers to ‘tackle situations of poverty and extreme poverty that persons with disabilities may face’ (No. 62) and for ‘family carers, who often live in situations of extreme poverty without the possibility of accessing the labour market’ (No. 67). The Committee also emphasised the ‘obligation of the part of States parties to ensure access to appropriate and affordable services, devices and other assistance for impairment-related requirements, especially for those persons with disability who live in poverty’ (No. 92). Going beyond the articulations of the Convention, the Committee considered it ‘contrary to the Convention for persons with disability to pay for disability-related expenses by themselves’ (No. 92). This clarification focuses on the obligation of states parties to finance for all disabled persons all disability-related expenses; however, disabilityrelated expenses are only part of the extra costs of disability that families of a child with impairment incur (Hirsch and Hill 2016; Sen 2004; Tibble 2005). Hirsch and Hill (2016, p. 899) defined extra costs of disability as the ‘additional costs that people with given impairments must incur in order to reach an equivalent living standard to those without these impairments’, and the disability-related special expenses are only a portion of that additional cost.

The EU Strategy for the Rights of Persons With Disabilities 2021–2030 and Poverty In their 2017 ‘European Pillar of Social Rights’ proclamation, the European Parliament, the European Council, and the European Commission jointly declared in Principle 17 that disabled people ‘have the right to income support that ensures living in dignity’ (European Commission 2017, p. 21). Corresponding to this Principle, the recently launched ‘Union of Equality: Strategy for the Rights of Persons with Disabilities 2021–2030’ acknowledges that after a decade of the first European Disability Strategy (2010–2020), disabled people still experienced a higher risk of poverty or social exclusion and a standard of living gap compared to non-disabled persons. The strategy identifies three reasons for the failure in securing an adequate standard of living for all disabled persons: insufficient labour market participation, insufficient social protection, and extra costs related to disability. Interestingly, a focus on social protection includes a call on member states to ‘define measures to further tackle gaps in social protection for persons with disabilities to reduce inequalities, including by compensating extra costs related to disability and eligibility for disability benefits’ (European Commission 2021a, p. 16). This focus of the EU Strategy does what the Convention on the Rights of Persons with Disabilities falls short of doing, namely, the recognition that living with an impairment contributes to an inequality in the standard of living, a standard of living gap that member states have an obligation to address through adequate social protection.

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Poverty and Disability Conceptual Link Irrespective of how poverty is conceptualised, a strong link emerges between poverty and disability, and a broad perspective is necessary when researching the link between poverty and disability (Palmer 2011). The work of Townsend (1979) contributed to an understanding of poverty within the context and culture in which it is being studied. In contrast to measures of income poverty that are derived as a function of established thresholds, a deprivation approach to poverty takes into consideration the broad cultural norms and context within which poverty is being studied (Townsend 1979). Poverty is conceptualised as the condition in which individuals, families. and groups do not have access to the resources necessary for living an ordinary life. A child is poor if the child is deprived of what the child needs to fully participate in society (Townsend 2013). Developing an understanding of child poverty also entails the consideration that, to a great extent, children depend on adults for their well-being.

Child Poverty A broad understanding of child poverty centres it within a human rights–based approach. In 2007, the UN General Assembly adopted a definition of child poverty focusing on the state of affairs in which children are ‘unable to enjoy their rights, to reach their full potential and to participate as full members of society’ (UNICEF 2007, para. 2). This definition promotes the view that child poverty should not be defined and measured as part of family or household poverty. Although in practice it is difficult to measure child poverty independently of other general assessments, the focus on child poverty highlights the differential long-term effect that poverty may have on a child’s biopsychosocial development, including the child’s outlook towards life (Evans and Kim 2013; Levin 2018). Financial security is necessary for children to thrive (Hughes and Tucker 2018), and such financial security inescapably depends on the financial security of the family. Consequently, our focus on children is understood in terms of family or household poverty, recognising that a child with impairment both shares in and contributes to the family’s conditions.

The Multiple Meanings of Poverty and Deprivation The meaning of poverty changes with time, place, and culture, and the way it is defined is shaped by, and reflects, the value base, ideology, and politics through which it is addressed (Lister 2021; Walker 2014). In simple terms, poverty implies the lack or scarcity of some resources necessary for one’s life. Deciding the point at which one’s shortage or absence of resources qualifies as poverty is less simple. Spicker (2007) theorises poverty within 12 clusters grouped under ‘material conditions’, ‘economic circumstances’, and ‘social position’, arguing that poverty has a multiplicity of meanings centring on the core concept of ‘unacceptable hardship’. The range of meanings is helpful in understanding the complex conceptual link between poverty and disability for children and their families. It draws attention to the additional and different

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needs of a child with impairment and their higher incidence of experiencing different and multiple patterns of deprivation (Mitra and Brucker 2017). Moreover, a child with impairment may be deprived from an ordinary childhood when their impairment-related needs are not met because of limited resources. Most of the poverty studies reviewed in the following section use an income-based definition of poverty which does not take into consideration the different consumption needs of a child with impairment or the extra impairment-related costs (Zaidi and Burchardt 2005); neither do they factor in how impairment may affect one’s capability to achieve a desired outcome from one’s income (Mitra 2006; Sen 2004; 2005). Poverty may also be understood as the extent to which the circumstances of a child with impairment and their family reflect dependency, lack of basic security and entitlement, affecting their social standing in society and possibly leading to social exclusion. Oliver (2013) recognises the fight against disability discrimination as a deprived class struggle.

Impairment, Unacceptable Hardship, and Disability To the extent that childhood needs cannot be met because of limited resources and lack of entitlement and basic security, a child with impairment experiences the disablement of poverty’s unacceptable hardship. Implied in this understanding of impairment and poverty is the risk of a cumulative disadvantage resulting from persistent or chronic poverty. Yeo and Moore (2003, p. 572) refer to the ‘vicious circle of poverty and disability’ to explain the reasons that contribute to the disproportionately high rates of poverty experienced by disabled persons and how poverty contributes to increased impairment, impairment intensification, and consequential disability. Poverty is disabling for anyone who experiences it because it reduces one’s capability to exercise one’s freedom as a full citizen. For any child, poverty disables them from the capability of living their childhood because of limited choices and opportunities. For a child with impairment, poverty intensifies the disabling barriers resulting from society’s discriminatory attitudes and exploitative economic structures. Conceptualising poverty and deprivation as the unacceptable hardship that progressively disables a child with impairment is necessary to understand the extent of the relationship between poverty and disability and to explore ways on how to break the link.

The Poverty Reality of a Child with Impairment There is strong evidence of some link between disability and poverty. In a systematic review involving 150 studies, 81% of the studies reviewed reported such a link, thus providing ‘a robust empirical collaboration to the more theoretical arguments of a link between disability and economic poverty’ (Banks, Kuper and Polack 2017, p. 11). Analysis of the 2017 EU-SILC data shows that in most EU countries, a higher percentage of children with impairment was found in households at risk of poverty (below 60% of the median equivalised income) than in households not at risk of poverty (Eurostat 2020). However, in most of these studies, the direction of the

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association is not clear (Banks et al. 2017). Moreover, any association between poverty and disability reflected in such findings probably underestimates the strength of this relationship because these findings do not account for the higher impairmentrelated economic needs.

Families Supporting a Child With Impairment Families supporting children with a range of physical and cognitive impairments experience considerable socioeconomic disadvantage. In a UK-based nationally representative study, Emerson and Hatton (2007, p. 575) observed that children with impairment are more likely to be living in families that experience significantly higher levels of economic and social hardships, suggesting that ‘the additional costs associated with caring for a disabled child account for a significant portion of the unexplained risk of increased hardship’. In an earlier analysis also based in the UK, Gordon and Heslop (1998) concluded that households with disabled children were among the poorest of the poor. Within the US context, Ghosh and Parish (2013) found that households with multiple children with impairment experienced poverty and material hardship significantly more than households supporting one child with impairment. But what happens when social protection financial benefits target children with impairment? In a recent case study on the interplay between employment, social status, and financial support carried out in Belgium, Vinck (2020) reports that disabled children experienced a lower poverty risk than non-disabled children (even when controlling for parental employment and social background) and explained this outcome as resulting from the targeted financial benefits directed at disabled children. This study parallels Evans and Williams’s (2008) earlier findings that rates of risk of poverty of disabled children who did not receive disability benefits were twice as those of children who received disability benefits. Similarly, Preston (2006, p. 42), also in the UK, concluded that ‘additional financial support does make a real difference to families’ lives. A rise in income reduces stress levels, and enables families and their children to be more active participants in society’. In both contexts, the financial benefits were limited in scope, reach, and take-up, restricting their impact in reducing poverty among disabled people and their families. Significantly, income poverty studies such as these do not factor in the children’s impairment-related extra costs in calculating risk of poverty rates (Evans and Williams 2008), which have been shown to be significant (Mitra et al. 2017; Morris and Zaidi 2020; Smith et al. 2004); in the UK context, caring for a child with impairment was found to be two to three times more expensive on average than caring for a child without impairment (Dobson et al. 2001; Middleton 1998). The need for suitable housing that allows families to meet their children’s impairment needs is another major and often-unmet expense consideration that is not reflected in income poverty studies (Sloper and Beresford 2006).

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The Extra Costs of Disability Most studies on the extra costs of disability focus on adults. Research on the extra costs for children with impairment shows a consistent pattern with other studies, namely, that the direct and indirect costs associated with impairment are substantial and vary with impairment severity, life cycle, and household composition (MacInnes et al. 2014; Mitra et al. 2017; Tibble 2005). Within the UK context, Burchardt and Zaidi (2008) suggested a 10% to 18% additional income to equivalise these families’ standard of living. They concluded that provision of free services and the increase in scope and reach of benefits supporting children with impairment can contribute to levelling of the inequality of opportunity due to the resultant extra costs of disability. When the extra costs of disability are disregarded in income poverty studies, poverty in families supporting children with impairment is under-reported. An identical income for two comparable households will not translate itself into a comparable standard of living for the two households when extra financial resources have to be consumed because of impairment (Morris and Zaidi 2020). Consequently, the financial impact of supporting a child with impairment is obscured, and its impact on a family’s risk of poverty may be completely concealed, reaching the conclusion that the presence of a child’s impairment does not increase a family’s risk of poverty (McKay and Stevenson, cited in Evans and Williams 2008). Using income as a proxy for quality of life in disability-related poverty studies is flawed, unless that income is equivalised to take into consideration the extra costs of disability.

Financial Well-Being and Financial Vulnerability The fear of, risk of, and vulnerability to poverty and deprivation permeate the experience of living with impairment for the child and the family, a disabling brunt despite not experiencing poverty and deprivation directly. Even when children with impairment and their families do not experience poverty or deprivation, their financial vulnerability is heightened, rendering them at a higher poverty risk susceptible to financial shocks (Batavia and Beaulaurier 2001). Maintaining financial stability is more challenging in situations of increased costs and decreased earnings related to a child’s impairment. Reducing the financial vulnerability of children with impairment and their families is necessary to prevent the risk of cumulative deprivation associated with long-term impairment. In a US-based study of families supporting children with intellectual impairment, Parish, Rose, and Swaine (2010, p. 241) found that a substantial percentage of parents caring for children and adult children with developmental impairment had ‘few assets to buffer them if financial crisis occurs’. Asset poverty and low liquid assets contribute to a family’s financial instability and consequential vulnerability. Moreover, the lower a family’s assets are, the less possible it is for the family to plan for a child’s future needs. Traustadóttir and Rice (2012, p. 14) argued that

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understanding the vulnerability of children with impairment and their families helps illustrate how they are often situated at the ‘margins of poverty and whose complex sociostructural or impairment-related issues can increase the chances of . . . falling in poverty and . . . make extraction from poverty much more difficult’. Understanding vulnerability can help refocus policy to address the ‘exacerbation of existing impairments as the result of struggling with poverty or the creation of new impairments such as those related to mental health issues’ (p. 14), bearing in mind both the complexity of personal, social, and environmental factors that create vulnerability (Batavia and Beaulaurier 2001) and the agency these families employ in multiple creative strategies to cope with their vulnerability (Traustadóttir and Rice 2012).

Living the Experience of Poverty and Deprivation Most of the research reviewed so far has focused on understanding the relationship between living with impairment and the experience of poverty, using studies based on aggregate data. The experience of living in poverty reduces one’s choices and opportunities to fully participate in the rights and contributions of citizenship. But how does poverty shape the experience of living with an impairment for children and their families? In their review of 20 narrative studies focusing on the experience of carers of children with impairment, van der Mark et al. (2017, p. 1198) argued that poverty implies an additional dimension and context to the parenting experience. Parents of children with impairment experience parenting as ‘time-consuming, stressful, physically challenging, isolating and expensive’, yet they develop coping practices that allow them to also enjoy their parenting experience as positive and beneficial. When affordability, availability, and accessibility are inadequate, the weight of the parenting experience and the coping means are negatively impacted by hampering caring strategies, reducing social support due to increased stigma, increased stress due to failure to meet basic needs, and inability to access impairment-related needs (van der Mark et al. 2017). This review argues that poverty magnifies the challenges of parenting children with impairment while diminishing the ability to enjoy and benefit from the experience. Rose and McAuley (2019) focused on parents’ lived experiences of poverty as a major barrier to providing for their families despite their caring good intentions and eagerness to secure the best for their child. It is a barrier that families supporting a child with impairment experience as compounding all other impairment-related barriers, thereby intensifying the ensuing disablement. An interesting distinction has been drawn between the way parents talk about their child with impairment and their experiences with various institutions that are part of their children’s development, namely, education, healthcare, and welfare. Thomas (2021, p. 462) portrays the experience of parents supporting children with Down syndrome as one that recognises the ‘value, worth and normalcy of their lives’

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in contrast to their struggles to access those institutional resources required for their child, experiences in which their child is devalued and stigmatised. The more they depend on public resources, the more stigma they experience. A family depending on welfare experiences the disparagement ingrained in public consciousness towards welfare. The child’s and family’s interactions with the institutional resources necessary to equivalise their quality of life are often a source of stigma and therefore disablement. The more poverty and deprivation in a child’s life, the less is it possible for the childhood experience to be one of value and normalcy, as parents find themselves having to unceasingly ‘navigate their way through practices and processes originating in structural constraints that have existed for a long time, but have been aggravated in neoliberal regimes’ (Thomas 2021, p. 462). Voices of disabled children living in poverty are basically absent from research, policy, and practice. These voices are, at least, triply silenced, as children, as living in poverty, and as having an impairment: add to this scenario issues of race, lone parenthood, unemployment, benefit dependent, and other factors inherent in a public discourse that ‘others’ people living in poverty in general (Lister 2015) and children living in poverty in particular (Ridge 2006). Children living in poverty experienced poverty as a direct barrier to their social participation and inclusion in activities and opportunities common to other children and as a factor that negatively distinguishes them from other children (Ridge 2006). Even when not clearly identified as rich or poor, children’s socioeconomic background strongly affected how they see themselves as distinct from children they perceive as better off or worse off from them (Sutton 2009). One can only expect that a child with impairment living in poverty experiences the same barriers described by other children, in addition to all the other disabling barriers society imposes on them. The ability of children living in poverty to still aspire for brighter future prospects was also observed in a recent UK study that engaged as co-researchers children with impairment living in low-income families and communities (Larkins et al. 2017). The voices of children and young persons with impairment in this study give a unique insight into the experience of being young and having an impairment, compounded with the impact of poverty. They blamed their poverty rather than their impairment as the main reason for not enjoying their right to the basic things necessary for good living; therefore, additional income was considered as necessary to overcome many barriers they faced.

The Age of Austerity Austerity policies and associated welfare reforms affect the worse those who have the least and who are most dependent on publicly financed benefits and services (Blyth 2013; Farnsworth and Irving 2011). Hauben et al. (2012, p. 45), in their report assessing the impact of austerity plans on disabled persons in Europe, argued that ‘children with disabilities are increasingly and disproportionally affected by the austerity measures in some of the Member States’. As a consequence of austerity measures, the direct and indirect financial and services safety net of disabled 138

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children and their families has been deteriorating (Flynn 2021; Horridge et al. 2019; Ryan 2019). In a 2018 UK-based study, 2,772 families supporting a child with impairment reported on their financial situation and how they were affected by the economic downturn (Contact 2018). The report found disabled children ‘going without essential therapies and equipment . . . [and] unable to make vital visits to the GP and hospital’ (p. 2), making the point that ‘raising disabled children is about more than money, but for families going without the essentials, hav[ing] the money to get to GP and hospital appointments, buy specialist equipment, keep the heating on . . . helps take the edge off’ (p. 2). Some parents’ narratives related in this study encapsulate the lived experience reality of poverty and deprivation and the further impact of the age of austerity. They are narratives of parents brokenhearted because they cannot afford a few days of holiday for their children; parents who cannot afford to take time off from work when their children’s health deteriorated; parents who live in housing circumstances not suitable for their children’s needs and cannot afford anything better; parents who feel inadequate because they cannot afford what their children need; parents who feel devalued and worthless, who feel like scroungers and thieves, and who are afraid of the future because of the hostile environment created by the austerity policies; and parents who cannot spend time with their terminally ill children because of money shortage (Contact 2018). Ensuing the age of austerity, the Covid-19 pandemic drew further attention to the excessive and uneven impact persons in vulnerable situations experienced, not least disabled children and their families. Siobhan Brennan et al.’s (2020, p. 7) report refers to the ‘catastrophic impact of the Covid-19 pandemic on persons with disabilities worldwide’. There findings suggested that disabled children living in the community and in institutions ‘were disproportionately affected’ (p. 35) by measures governments took or failed to take; the unavailability of essential supplies and services, including medicine and food, basic healthcare, and education; diminished or no support for families of disabled children, including when families had to stay home because of Covid-19 measures; and children living in poverty for whom schools and disability services provided essential food and medicinal provisions experiencing major problems to access such necessities. Similar to the effects of austerity-related policies and measures, the pandemic propagated a further variation on the theme explored in this chapter, namely, that disabled children and their families tend to get more than their fair share of society’s undesirable situations; in normal circumstances, disabled children and their families are more likely to experience poverty and deprivation compared to other families, and when the going gets tough, they suffer the worse brunt of it all.

Poverty and Institutionalisation Any discussion on poverty, deprivation, and disabled children cannot ignore the reality of disabled children living in institutional care and the increased risk of institutionalisation resulting from poverty and deprivation. These are disabled children 139

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deprived of liberty ‘in the name of care and treatment’ (Barriga et al. 2017, p. 285), whose total care depends on the institution that houses them. A thorough analysis of this enduring reality is necessary to understand the factors that contribute to the continued institutionalisation of disabled children, the deprivation associated with an institutionalised childhood, and also the higher prevalence of children with undetected impairments and varying degrees of intellectual and behavioural impairments in criminal detention, an analysis that goes beyond the scope of this chapter. No doubt, there are strong historical and cultural contextual actualities that play a significant part in the institutionalisation of disabled children; however, Barriga et al. (2017), based on Human Rights Watch research carried out between 2013 and 2016, refer to various countries in which disabled children are overrepresented in the number of children placed in institutional care and to extensive abusive practices suffered by such children. While the common assumption is that institutionalised disabled children are in care because of their specialised needs and that once in care the children will not lack anything, the reality is often different; among other aspects, Barriga et al. (2017, p. 287) mention ‘de-personalization; overcrowding; instability of caregiver relationships; lack of caregiver responsiveness; repetitive, fixed, daily timetables for sleep, eating, and hygiene routines not tailored to children’s needs and preferences; and sometimes, insufficient material resources’. Poverty, lack of health, education, and support services, and social exclusion pressure parents who, in many countries, ‘feel they have no choice but to place their child with a disability in an institution’ (p. 288). Correspondingly, Rosenthal (2017, p. 315) argued that ‘the majority of children are placed in orphanages because of poverty or disability’. Similarly, focusing on the EU, Waddington and Priestley (2018, p. 244) highlighted the increased risk of poverty in families supporting disabled children, concluding that ‘the intersection of disability poverty risk and child poverty risk must be better understood, to ensure adequate social protection against the consequent risk of institutionalisation’. At the greatest risk of institutionalisation are children with intellectual impairments, especially when families feel powerless in providing for their children’s needs; these are situations in which ‘families struggle to access information, basic supports and services, and education . . . [and] are left on their own with no support’ (Richler, MacQuarrie and LaurinBowie 2017, p. 355).

Some Concluding Thoughts The discussion in the chapter barely scratches the surface of the complex and dynamic picture of poverty, deprivation, inequality, hardship, lack of resources, and privation that contributes to the various degrees and intensity of unacceptable hardship that a child with impairment and the families that support them may experience. This unacceptable hardship is a disabling barrier to the child’s right to enjoy their childhood to fruition and grow to an adulthood of full citizenship. But poverty is not just one other barrier that disables children; it is the

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barrier that conditions and intensifies all other barriers and compounds their disabling impact. Availability of adequate resources provides a child disabled by societal barriers with the means to overcome some, but not all, of the barriers; conversely, lack of sufficient resources disables a child’s ability to prevail over society’s disabling barriers. From the moment a child starts living with impairment, the subjective, relational, and society experiences of the impairment are shaped by the child’s resources, or lack of them, and the resources of the family supporting the child. The argument here is simple: more than anything else, the incidence of poverty in any of its form and variation shapes the disability of a child living with longterm physical, cognitive, emotional, sensory, health, or mental health impairment. As Strelitz and Lister (2008, p. 143) argued, whatever capabilities families in poverty have, lack of income is at the core of the experience of poverty, and the reality of low income ‘pervades much of parents’ and children’s lives, imposing constraints and penalties, which can have a deeply harmful impact on children’s wellbeing and life chances’. Living with impairment therefore implies the need for additional financial and other resources to acquire an equivalised standard of living. Some of these additional costs are directly impairment-related; others arise due to societal barriers. Income transfers are necessary to meet the additional costs arising from a child’s impairment. However, to be effective, such income transfers need to recognise the ‘heterogeneity among types of households, employment status and across levels of disability severity’ (Morris and Zaidi 2020, p. 351) which shape a higher cost of living for any family supporting a child with impairment. A radical consideration is to recognise children as citizens in their own right (albeit primarily supported by their families) and fully insure any child for all the additional resources required because of their impairment, thereby levelling the gap between families that support and those that do not support a child with impairment. Such a comprehensive insurance would embody a society that is fully committed to ‘ensure and promote the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability’ (Convention on the Rights of Persons with Disabilities 2007, Article 4, para. 1). Within the European Union, the Council’s recent decision to set up a ‘European Child Guarantee’ that identifies children with disabilities as a priority points towards this direction (European Commission 2021b). Any policy or service initiative to rebalance the inequality in the standard of living a child experiences because of impairment can only be effective if the uniqueness of each child and the child’s family situation is recognised. We do not know enough on how the impairment experience of a child and their families is moulded by poverty, material deprivation, and inequality. We need children and families to tell us their stories. And when we learn to listen to their stories, let us hope that like the children and youth in Larkins et al.’s (2017) study, they will tell us that their poverty experiences did not destroy their belief in a brighter future.

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Extreme poverty, children and disability According to the latest available World Bank data on global poverty, preceding any impact of the COVID-19 pandemic, in 2017, 17.5% of the world children (compared to 7.9% of adults) were living below the extreme International Poverty Line [IPL] of $1.90 a day (in 2011 purchasing power parity terms), 41.5% at less than $3.20 a day, and 66.7% at less than $5.50 a day. Of the 9.2% of the world population living below the extreme IPL, half of them were children, adding up to 356 million children (Silwal et al. 2020). Applying a conservative guesstimate of 5% of children having an impairment (World Health Organization and World Bank 2011) implies that nearly 18 million children with impairment were living in extreme poverty in 2017. Undoubtedly, the reality is much worse considering the geographical distribution of extreme poverty and the likelihood of higher prevalence of extreme poverty in fragile economies affected by conflict, violence, climate change, and poor access to health and education (World Bank 2020), all of which further compound the likelihood of impairment, the severity of the impairment experience, and the concomitant disablement. Silwal, A. R., Engilbertsdottir, S., Cuesta Leiva, J. A., Newhouse, D. L. and Stewart, D. 2020. Global estimate of children in monetary poverty: An update. [online] World Bank Group. Availble from: http://documents.worldbank.org/curated/en/96679160312345 3576/Global-Estimate-of-Children-in-Monetary-Poverty-An-Update World Bank. 2020. Poverty overview. [online] [Accessed 7 October 2020] Available from: https://www.worldbank.org/en/topic/poverty/overview World Health Organization and World Bank. 2011. World report on disability. [online] Available from: https://www.who.int/disabilities/world_report/2011/report.pdf

References Banks, L. M., Kuper, H. and Polack, S. 2017. Poverty and disability in low- and middleincome countries: A systematic review. PloS ONE 12(12), article no: e0189996. Barriga, S. R., Buchanan, J., Ćerimović, E. and Sharma, K. 2017. Children with disabilities: Deprivation of liberty in the name of care and treatment. In Protecting children against torture in detention: Global solutions for a global problem. American University, Washington College of Law: Center for Human Rights & Humanitarian Law, pp. 285–302. Available from: http://antitorture.org/wp-content/uploads/2017/03/Protecting_Children_From_Torture_in_Detention.pdf Batavia, A. I. and Beaulaurier, R. L. 2001. The financial vulnerability of people with disability: Assessing poverty risks. Journal of Sociology and Social Welfare 28(1), pp. 139–162. Blyth, M. 2013. Austerity: The history of a dangerous idea. Oxford: Oxford University Press. Burchardt, T. and Zaidi, A. 2008. Disabled children, poverty and extra costs. In J. Strelitz and R. Lister (eds.), Why money matters: Family income, poverty and children’s lives. London: Save the Children Fund, pp. 26–33. Contact. 2018. Counting the costs: Research into the finances of more than 2,7000 families across the UK in 2018. London: Contact. Available from: https://contact.org.uk/wp-content/ uploads/2021/03/counting_the_costs_2018.pdf

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Poverty, Deprivation, and Disabled Children’s Right Convention on the Rights of Persons with Disabilities. 2007. [Online] 2515 UNTS 3, opened for signature 30 March 2007, entered into force 3 May 2008. [Accessed on 3 December 2020] Available from: www.un.org/disabilities/documents/convention/ convoptprot-e.pdf Cullinan, J. 2015. The economic costs of disability for families. Frontline 97. [Online] Available from: https://frontline-ireland.com/economic-costs-disability-families/ Dobson, B., Middleton, S. and Beardsworth, A. 2001. The impact of childhood disability on family life. [Online] York: Joseph Rowntree Foundation. Available from: www.jrf.org.uk/report/ impact-childhood-disability-family-life Duncan, G. J., Magnuson, K., Kalil, A. and Ziol-Guest, K. 2012. The importance of early childhood poverty. Social Indicators Research 108(1), pp. 87–98. Elwan, A. 1999. Poverty and disability: A survey of the literature (SP discussion paper No. 9932). [Online] Washington, DC: The World Bank, Social Protection Advisory Service. Available from: http://documents1.worldbank.org/curated/en/488521468764667300/pdf/multi-page.pdf Emerson, E. and Hatton, C. 2007. The socio-economic circumstances of children at risk of disabilty in Britain. Disability & Society 22(6), pp. 563–580. European Commission. 2017. European pillar of social rights. [Online] Available from: https://ec.europa.eu/info/sites/info/files/social-summit-european-pillar-social-rightsbooklet_en.pdf European Commission. 2021a. Union of equality: Strategy for the rights of persons with disabilities 2021–2030. [Online] Available from: https://doi.org/10.2767/31633 European Commission. 2021b. Commission proposes action to uphold child rights and support children in need [Press release]. [Accessed on 24 March 2021] Available from: https:// ec.europa.eu/commission/presscorner/detail/en/IP_21_1226 Eurostat. 2020. Health statistics—Children. [Eurostat statistics explained] [Accessed on 8 December 2020] Available from: https://ec.europa.eu/eurostat/statistics-explained/index. php?title=Health_statistics_-_children#Disability_.28activity_limitations_due_to_health_ problems.29 Evans, G. W., Chen, E., Miller, G. E. and Seeman, T. 2012. How poverty gets under the skin: A life course perspective. In R. King and V. Maholmes (eds.), The Oxford handbook of poverty and child development. Oxford: Oxford University Press, pp. 13–36. Evans, G. W. and Kim, P. 2013. Childhood poverty, chronic stress, self-regulation, and coping. Child Development Perspectives 7(1), pp. 43–48. Evans, M. and Williams, L. 2008. Tackling child poverty when parents cannot work. [Online] York: Joseph Rowntree Foundation. Available from: www.jrf.org.uk/report/tacklingchild-poverty-when-parents-cannot-work Farnsworth, K. and Irving, Z. 2011. Varieties of crisis. In K. Farnsworth and Z. Irving (eds.), Social policy in challenging times: Economic crisis and welfare systems. Bristol: Policy Press, pp. 1–30. Flynn, S. 2021. Irish intellectual disability services for children and austerity measures: The qualitative impact of recession through framework method. Child Care in Practice 27(4), pp. 372–388. Ghosh, S. and Parish, S. 2013. Prevalence and economic well-being of families raising multiple children with disabilities. Children and Youth Services Review 35, pp. 1431–1439. Grech, S. 2015. Disability and poverty in the global South: Renegotiating development in Guatemala. London: Palgrave Macmillan. Gordon, D. and Heslop, P. 1998. Poverty and disabled children. In D. Dorling and L. Simpson (eds.), Statistics in society: The arithmetic of politics. London: Arnold, pp. 161–171. Hauben, H., Coucheir, M., Spooren, J., McAnaney, D. and Delfosse, C. 2012. Assessing the impact of European governments’ austerity plans on the rights of people with disabilities. Brussels: European Foundation Centre. Heikkilä, M., Katsui, H. and Mustaniemi-Laakso, M. 2020. Disability and vulnerability: A human rights reading of the responsive state. The International Journal of Human Rights 24(8), pp. 1180–1200.

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Edgar Galea-Curmi Hirsch, D. and Hill, K. 2016. The additional cost of disability: A new measure and its application to sensory impairment. Disability & Society 31(7), pp. 897–913. Horridge, K. A., Dew, R., Chatelin, A., Seal, A., Merio Macias, L., Cioni, G., Kachmar, O. and Wilkes, S. 2019. Austerity and families with disabled children: A European survey. Developmental Medicine & Child Neurology 61, pp. 329–336. Hughes, M. and Tucker, W. 2018. Poverty as an adverse childhood experience. North Carolina Medical Journal 79(2), pp. 124–126. Larkins, C., Thomas, N., Judd, D., Lloyd, J., Carter, B., Farrelly, N., (with Hendry, R. and Davis, L.,), Carr, Z., Corr, D., Finch, W. J., Onia, A., Reed, E., Sheehan, D, Titterington, R. and Winstanley, R., (with Carroll, L., Burgess, N. and Mundry, H.). 2017. “We want to help see things our way”: A rights-based analysis of disabled children’s experience living with low income. [Online] Children’s Commissioner, UK, and the University of Central Lancashire. Available from: www.childrenscommissioner.gov.uk/wp-content/uploads/2017/07/ We_want_people_to_see_things_our_way.pdf Lesner, R. V. 2018. The long-term effect of childhood poverty. Journal of Population Economics 31(3), pp. 969–1004 Levin J. N. 2018. When the basic necessities of life are missing: The impact of poverty on children. In J. Szente (ed.), Assisting young children caught in disasters: Multidisciplinary perspectives and interventions (Educating the young child: Advances in theory and research, implications for practice), vol 13. Cham: Springer, pp. 93–101. Lister, R. 2015. ‘To count for nothing’: Poverty beyond the statistics. Journal of the British Academy 3, pp. 139–165. Lister, R. 2021. Poverty. 2nd edition. Cambridge: Polity Press. MacInnes, T., Tinson, A., Gaffney, D., Horgan. G. and Baumberg B. 2014. Disability, long term conditions and poverty. [Online] London: New Policy Institute. Available from: www.npi.org. uk/files/7814/0490/1005/Disability_long_term_conditions_and_poverty.pdf Middleton, D. B. 1998. Paying to care: The costs of childhood disability. [Online] York: Joseph Rowntree Foundation. Available from: www.jrf.org.uk/report/paying-care-cost-childhood-disability Mitra, S. 2006. The capability approach and disability. Journal of Disability Policy Studies 16(4), pp. 236–247. Mitra, S. and Brucker, D. L. 2017. Income poverty and multiple deprivations in a high‐income country: The case of the United States. Social Science Quarterly 98(1), pp. 37–56. Mont, D. 2019. Childhood disability and poverty. [Working paper 25]. [Online] London: Leonard Cheshire Disability and Inclusive Development Centre, University College London. Available from: www.ucl.ac.uk/epidemiology-health-care/sites/iehc/files/wp-25.pdf Morris, Z. A. and Zaidi, A. 2020. Estimating the extra costs of disability in European countries: Implications for poverty measurement and disability-related decommodification. Journal of European Social Policy 30(3), pp. 339–354. Murphey, D. and Redd, Z. 2014. 5 ways poverty harms children. Child Trends. [Online] Available from: www.childtrends.org/publications/5-ways-poverty-harms-children Oliver, M. 1996. Understanding disability: From theory to practice. New York: Macmillan Education. Oliver, M. 2013. The social model of disability: Thirty years on. Disability & Society 28(7), pp. 1024–1026. Palmer, M. 2011. Disability and poverty: A conceptual review. Journal of Disability Policy Studies 21(4), pp. 210–218. Parish, S. L., Rose, R. A. and Swaine. J. G. 2010. Financial wellbeing of US parents caring for coresident children and adults with developmental disabilities: An age cohort analysis. Journal of Intellectual and Developmental Disability 35(4), pp. 235–243. Preston, G. 2006. Families with disabled children, benefits and poverty. Benefits 14(1), pp. 39–43. Read, J., Blackburn, C. and Spencer, N. 2012. Disabled children and their families: A decade of policy change. Children & Society 26, pp. 223–233.

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Poverty, Deprivation, and Disabled Children’s Right Richler, D., MacQuarrie, A. and Laurin-Bowie, C. 2017. Hidden and invisible: Children with intellectual disabilities deprived of liberty. In Protecting children against torture in detention: Global solutions for a global problem. American University, Washington College of Law: Center for Human Rights & Humanitarian Law, pp. 353–365. Available from: http:// antitorture.org/wp-content/uploads/2017/03/Protecting_Children_From_Torture_in_ Detention.pdf Ridge, T. 2006. Childhood poverty: A barrier to social participation and inclusion. In E. Kay, M. Tisdall, J. M. Davis, A. Prout and M. Hill (eds.), Children, young people and social inclusion: Participation for what? Bristol: The Policy Press, pp. 23–38. Rose, W. and McAuley, C. 2019. Poverty and its impact in the UK: Re-defining the critical nature of the relationship through examining lived experiences in times of austerity. Children and Youth Services Review 97, pp. 134–141. Rosenthal, E. 2017. A mandate to end placement of children in institutions and orphanages: The duty of governments and donors to prevent segregation and torture. In Protecting children against torture in detention: Global solutions for a global problem. American University, Washington College of Law, Center for Human Rights & Humanitarian Law, pp. 303–352. Available from: http://antitorture.org/wp-content/uploads/2017/03/Protecting_Children_From_Torture_in_Detention.pdf Ryan, F. 2019. Crippled: Austerity and the demonization of disabled people. London: Verso. Sen, A. K. 2004. Disability and justice. Disability and inclusive development: Sharing, learning and building alliances. Washington, DC: World Bank. Sen, A. K. 2005. Human rights and capabilities. Journal of Human Development 6(2), pp. 151–166. Shahat, A. R. S. and Greco, G. 2021. The economic costs of childhood disability: A literature review. International Journal of Environmental Research and Public Health 18, pp. 3531. Sherry, M. 2016. A sociology of impairment. Disability & Society 31(6), pp. 729–744. Siobhan Brennan, C., Allen, S., Arnold, R., Bulic Cojocariu, I., Ciric Milovanovic, D., Gurbai, S., Hardy, A., Kawano-Chiu, M., Kokic, N., Mgijima-Konopi, I., Rosenthal, E. and Youssefian, E. 2020. Disability rights during the pandemic: A global report on findings of the COVID-19 Disability Rights Monitor. COVID-19 Disability Rights Monitor. Available from: https://covid-drm.org/assets/documents/Disability-Rights-During-the-Pandemicreport-web.pdf Sloper, T. and Beresford, B. 2006. Families with disabled children: Social and economic needs are high but remain largely unmet. The BMJ 333, pp. 928–929. Smith, N., Middleton, S., Ashton-Brooks, K., Cox, L. and Dobson, B (with Reith, L). 2004. Disabled people’s cost of living: More than you would think. [Online] York: Joseph Rowntree Foundation. Available from: www.jrf.org.uk/report/disabled-peoples-costs-living Spicker, P. 2007. Definitions of poverty: Twelve clusters of meaning. In P. Spicker, S. A. Leguizamón and D. Gordon (eds.), Poverty: An international glossary. 2nd edition. London: Zed Books, pp. 229–243. Strelitz, J. and Lister, R. eds. 2008. Why money matters: Family income, poverty and children’s lives. London: Save the Children Fund. Sutton, L. 2009. ‘They’d only call you a scally if you are poor’: The impact of socio-economic status on children’s identities. Children’s Geographies 7(3), pp. 277–290. Thomas, G. M. 2021. Dis-mantling stigma: Parenting disabled children in an age of ‘neoliberal-ableism’. The Sociological Review 69(2), pp. 451–467. Tibble, M. 2005. Review of existing research on the extra costs of disability. [Working paper no. 21]. [Online] Department for Work and Pensions. Available from: https://webarchive.nationalarchives.gov.uk/20090606002817/www.dwp.gov.uk/asd/asd5/WP21.pdf Townsend, P. 1979. Poverty in the United Kingdom. Berkeley: University of California Press. Townsend, P. 2013. The international analysis of poverty. London: Routledge. Traustadóttir, R. and Rice, J. 2012. Vulnerability at the intersection of poverty and disability. Vulnerable Groups & Inclusion 3(1), p. 9172.

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Edgar Galea-Curmi Twine, F. W. and Bradley G. eds. 2013. Geographies of privilege. London: Routledge. UNICEF. 2007. UN General Assembly adopts powerful definition of child poverty. [News note] [Accessed on 10 January 2007] Available from: www.unicef.org/media/media_38003.html United Nations. 2017. General comment No. 5 (2017) on living independently and being included in the community. Committee on the Rights of Persons with Disabilities, United Nations. Available from: https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download. aspx?symbolno=CRPD/C/GC/5&Lang=en van der Mark, E. J., Conradie, I., Dedding, C. W. M. and Broerse, J. E. W. 2017. How poverty shapes caring for a disabled child: A narrative literature review. Journal of International Development 29, pp. 1187–1206. Vinck, J. 2020. Income poverty among children with a disability in Belgium: The interplay between parental employment, social background and targeted case support. [Working paper 20/09]. [Online] University of Antwerp, Herman Deleeck Centre for Social Policy. Available from: https://lirias.kuleuven.be/3374106?limo=0 Waddington, L. and Priestley, M. 2018. Mainstreaming disability rights in the European Pillar of Social Rights—A compendium. Academic Network of European Disability Experts. Available from: https://cris.maastrichtuniversity.nl/en/publications/mainstreaming-disability-rightsin-the-european-social-pillar Walker, R. 2014. The shame of poverty. Oxford: Oxford University Press. Yeo, R. and Moore, K. 2003. Including disabled people in poverty reduction work: “Nothing about us, without us”. World Development 31(3), pp. 571–590. Zaidi, A. and Burchardt, T. 2005. Comparing incomes when needs differ: Equivalisation for the extra costs of disability in the UK. Review of Income and Wealth 51(1), pp. 89–114.

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9 THE CARE DEPENDENCY GRANT IN SOUTH AFRICA Challenges on the Road to Inclusive Rights Zara Trafford Introduction Children living in poverty who are also disabled are one of the ‘most marginalised and underserved population groups worldwide’ (United Nations Children’s Fund 2021, p. 126). Disability does not necessarily entail vulnerability (Philpott and McKenzie 2017). However, the compounding effects of multidimensional poverty mean that disabled children living in poverty are more likely to be socially excluded and have worse access to key services for their health and well-being than non-disabled peers (Banks et al. 2017; Ullmann et al. 2021). Globally, there is evidence that government social protection interventions can help economically or socially marginalised people to provide for some of their needs (Walsham et al. 2019). State-sponsored cash transfers are generally initiated for poverty alleviation or to support disabled or elderly people (Schneider et al. 2011; Kuper et al. 2020). In low- and middle-income countries (LMICs), where public services are often under-resourced and rates of systemic poverty are high, social protection schemes targeted at disabled people along their life course are especially important (Banks et al. 2017; Kuper et al. 2020). Various multilateral organisations and international guideline committees have embedded social protection programming into their mandates for the protection of the human rights of disabled children, in an attempt to set an inclusive and progressive global agenda (Ullmann et al. 2021). Direct (unconditional or conditional) cash transfer schemes are the most common example of state-funded social assistance in the Global South, where achieving deeper structural change is usually a long and arduous process (Hanlon et al. 2010; Leisering 2020). Cash transfers are partly based on the rationale that, if recipients are able to provide for their basic needs, their wider social, economic, and political rights are more likely to be realised. However, the evidence is mixed on whether these programmes help people provide for themselves and their families more comprehensively (Fragoso 2021). DOI: 10.4324/9781003056737-12

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This chapter presents a discussion of whether in one LMIC, the disabled child’s right to social protection is protected by two key global human rights treaties: the United Nations (UN) Convention on the Rights of the Child (1989) (CRC) and the UN Convention on the Rights of Persons with Disabilities (2006) (CRPD). After providing some background on relevant aspects of the CRC and CRPD, I evaluate the extent to which the CRPD and CRC have been translated into local policy in South Africa (SA). I use an unconditional cash transfer, the care dependency grant (CDG), and its surrounding legislative environment as illustrative examples. As the CDG is the government’s primary mechanism for the social assistance of disabled children, it is a useful case for discussing whether the country is delivering on its commitments to these children and their families. Finally, I reflect on the importance of coherent planning and thoughtful, intersectoral implementation of disability policy, concluding with applicable insights for countries with similar socioeconomic contexts.

The Right to Social Protection for the Disabled Child as Enshrined in the CRC and CRPD The CRC and CRPD were designed to uphold the rights of children and disabled people, respectively. Historically, the human rights of these overlapping population groups were deprioritised by most societies, resulting in disempowerment and decreased autonomy for the disabled child (Ekberg et al. 2022). In an attempt to correct this pattern, both the CRC and the CRPD affirm the disabled child’s right to social protection and an adequate standard of living. Both Conventions also assert that an understanding of the distinctiveness of childhood, as a specific life stage, ought to be incorporated into any provisions that are made for the disabled child’s care, safety, inclusion, and legal protection.

Social Protection and Disability in the Convention on the Rights of the Child In countries that are signatory to the CRC, disabled children are legally entitled to the services and resources that they need to live safe, healthy, and fulfilled lives. Articles 26 and 27 reassert all children’s right to benefit from social security, especially in cases where economic disparities make some especially vulnerable. State-sponsored social protection programmes are highly recommended, and the CRC specifically notes that the social security available to children must account for their individual circumstances and the resources available for their care. The right to early childhood development and care, high-quality education, and appropriate health and rehabilitative services for all children is also declared. Article 23 instructs that the disabled child ought to ‘enjoy a full and decent life’ in circumstances that promote the child’s dignity, self-reliance, and participation. By dedicating Article 23 exclusively to the rights of the disabled child, however, the CRC contrasts with the inclusive approach apparent in the CRPD. It is important to highlight challenges that might only be 148

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faced by disabled children, but singling them out and assigning them their own, separate section may have unintended consequences. When providing for the children in their societies, policy- and decision-makers should instead be encouraged to consider disabled children an integral part of the diverse child population rather than a discrete group.

Social Protection and Childhood in the Convention on the Rights of Persons With Disabilities Various articles in the CRPD focus specifically on the right to social protection and an adequate standard of living for disabled children. Article 7 is a broad statement of the disabled child’s entitlement to ‘all human rights and fundamental freedoms on an equal basis with other children’. As part of a broad conception of social protection, Article 28 mandates that disabled children (and adults) ought to have reliable access to assistive devices, assistance from the state for disability-related costs, including counselling and respite care, and clean water, public housing, and financial support throughout the life course (Ullmann et al. 2021). And finally, Articles 16, 23, 24, 25, and 26 list additional rights intrinsically held by the disabled child: the right to protection from abuse and discrimination, to live with their own family, to all stages of education, to healthcare and rehabilitation, and to play and sporting activities. The CRPD is a resounding call for its signatory countries to ensure that the rights of disabled children are properly understood and protected. It instructs that states parties should play a central role in securing these rights and that financial and other resources be deployed to this end, even in low-resource environments (UN Committee on the Rights of Persons with Disabilities 2018). However, the CRPD’s vision is a far cry from contemporary reality. In a recent opinion piece, Jan Grue (2021), a physically disabled academic living in Norway, referred to the CRPD as ‘utopian’ because it describes a world in which all forms of disability-related discrimination are eliminated. Nordic countries are considered global leaders in the achievement of human rights and strong social security systems, but even from the perspective of a tenured professor living in Norway, the CRPD’s goals seem unattainable. In SA and in many other Global South LMICs, where the right to basic services is not guaranteed for the vast majority of children, the CRPD’s vision for disabled children (a minority population) feels, at best, unlikely and, at worst, quixotic.

A Focus on South Africa The following case study reflects on the implementation of a social assistance programme for disabled children in SA by drawing on evidence from secondary literature and empirical data from an ongoing qualitative study (see Trafford and Swartz 2021 for full details). Although the focus is on one country, reflections from SA can provide insight into the situation of poor disabled children in other LMICs. The wider applicability of these research findings is discussed later in the chapter. At the time of writing, individual in-depth interviews had been conducted from July 149

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2020 to November 2021. Participants included officials from a national government department and its social security agency, activists and academics, doctors who conduct disability assessments, primary caregivers of disabled children, social workers, and civil society organisation staff. There was racial and gender diversity in the group. Of 29 participants, 4 were disabled adults and 2 were mothers of disabled children. Although prevalence and disability-disaggregated data are insufficient, literature and the existing evidence indicate that disabled children in SA have far lower access to educational and health services, play and socialisation, and societal inclusion than their non-disabled peers (Saloojee et al. 2007; Shung-King et al. 2019; Khan et al. 2020). Evidently, their rights have not yet been realised, despite the country’s progressive commitments. This case study illustrates that follow through on commitments to important human rights treaties—such as the CRC and CRPD, ratified by SA in 1995 and 2007, respectively—cannot be achieved without coherent and properly resourced implementation, monitoring, and quantitative and qualitative evaluation.

The Context for Disabled Children and the Role of the Care Dependency Grant in South Africa In SA, access to adequate educational and health services can be extremely expensive, even for the small percentage of the population that can afford services in the wellresourced private sector. Children living in poverty generally rely heavily or solely on services that are fully or partially government-funded (McKenzie and Chataika 2017; Shung-King et al. 2019; Visagie et al. 2020). Primary care services are technically available for free or at a very low cost, but structural factors can become rigid or impenetrable barriers to access (see public transport example in the following). For disabled children, this situation is further complicated by a lack of adequately trained rehabilitation professionals and access to assistive technology (AT). Some AT is state-subsidised, but waiting lists may be many years long and the devices eventually obtained are often old, broken, or inappropriate for the person’s context, age, or disability (Trafford et al. 2021). Disabled children are also less likely than their nondisabled peers to access education at all stages, from early childhood development to tertiary education (Elphick et al. 2015; Khan et al. 2020). In the few educational spaces available to them, the disabled child’s right to protection from violence and abuse is not secured. In an investigation of special schools in SA’s North-West province, the South African Human Rights Commission reported on the death of three learners in a fire in a deaf learners’ residential hostel and injury to 23 others who were hurt jumping out of windows to flee the fire (SAHRC 2018). Widespread risk of physical and sexual abuse, inaccessible toilets, inadequate security measures in high-crime areas, and unreliable access to electricity and water were also documented (SAHRC 2018, p. 48). Patterns of exclusion and insufficient access are thus particularly profoundly felt by children living in poverty who are also disabled (Philpott and Muthukrishna 2019). The aforementioned examples depict a situation in which social protection in its broader terms (i.e. access to necessary services and an adequate standard of living, 150

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proper care, protection, and social participation) is systematically deprioritised and under-developed for disabled children in SA. The government’s most direct means for the social assistance of disabled children is the CDG, one of a range of cash transfers (known locally as ‘grants’) available in the public non-contributory programme that is considered ‘the backbone’ of the social protection system (Fall and Steenkamp 2020, p. 10). Around 18 million grants are now paid to 11.4 million beneficiaries in a population of 59 million people (SASSA 2021). To apply for the CDG, the primary caregiver of a child with disability must undergo a means test, and their child’s disability must be assessed by a doctor. The nature of and arrangements associated with these assessments vary nationally but all take the form of a (medical) evaluation of the severity of the child’s impairment and their capacity to perform age-appropriate daily tasks. If the grant is approved, it is distributed monthly to the applicant (caregiver), until their child turns 18. The CDG was set at 1,890 ZAR (122 USD) per month at the time of writing. In a context where a range of additional supports provided by numerous sectors in government ought to be—but often are not—available to realise these children’s right to an adequate standard of living, the CDG seems to function as a ‘catch-all’ approach to the social protection of disabled children living in poverty (Trafford and Swartz 2021). The following discussion elaborates on the claim that, to date, SA’s relatively comprehensive and progressive policies for the social assistance of disabled children have been hindered by severe pitfalls in implementation.

Legislation That Disables Instead of Enabling Multi-nation commitments such as the Sustainable Development Goals (United Nations 2015) serve as statements of shared aims and suggested guidelines for countries across the world. In contrast, the CRC and CRPD are legally binding international human rights treaties. Signatory countries must thus ensure that their targets and ideals are embedded in national legislation (‘domesticated’) and that progress is independently monitored (Adams 2020). The CRPD instructs the full domestication of its principles as quickly as possible and mandates that attendant budgets, timelines, and monitoring processes be mobilised, even if they are costly (SALRC 2020). The White Paper on the Rights of Persons with Disabilities was published in 2015 to try to rationalise disability policy in SA, but by the end of 2020, the South African Law Reform Commission reported that, ‘(the why and the how) will need to be fleshed out . . . to ascertain how the CRPD can be domesticated’ (SALRC 2020, p. 198). In other words, domestication had not yet happened. Other local legislation and international agreements align with and undergird the aims of the CRPD and CRC, including the African Charter on the Rights and Welfare of the Child, the South African Constitution, the Children’s Act, and the Social Assistance Act. However, even for a professional researcher, it is difficult to identify all relevant disability policies to clarify which are currently in use and to determine the links between them. In SA, instructions for the delivery, implementation, staffing and monitoring, and evaluation of social programmes are often too ambitious, too vague, or non-existent, and this is especially true with regard to legislation to protect and serve disabled 151

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children. The vast majority of relevant policies have not yet been translated into formal mandates with accountability mechanisms, nor have they been enabled by proper resourcing and training (SAHRC 2018). For example, the Department of Women was expanded into the Department of Women, Youth, and Persons with Disabilities (DWYPD) in 2019, but no additional funding, human resource, or training provisions were made to facilitate their now much larger target population (South African National Assembly 2020). In its 2015/2016–2019/2020 strategic plan, the Department of Basic Education reiterated SA’s intention to improve inclusive education provisions nationally but did not facilitate this with ‘action plans, targets or budgetary allocations’ (The Right to Education for Children with Disabilities Alliance 2016, p. 4). Disability is supposed to be handled as an intersectoral, multi-department government responsibility, but this can make it difficult to institute strong accountability systems or determine which government structure holds the responsibility for ensuring policies are properly implemented. SA’s system of cooperative (devolved) governance further complicates the situation. Each of the country’s nine provinces, and even its many municipalities, may have their own hyperlocal policies. Due to historic patterns of ‘separate development’ (geographical segregation on the basis of race), different areas often have profoundly different resources and capacity for implementation. Once high-level government commitments and plans are made, they must therefore also be associated with enabling budgets, accountability arrangements, and proper monitoring (United Nations 2007).

The CDG Assessment—A Long Way to Go to CRPD Compliance In recent interviews, respondents within and outside of government both identified the Department of Social Development (DSD) as the default department for disability-related service delivery and support from the state. The DSD is responsible for designing and updating the Social Assistance Act (Act 13 of 2004, South African Parliament), the legislation that governs state-funded social protection. The South African Social Security Agency (SASSA) is the DSD’s implementation agent. SASSA administers and manages all grant applications in the country, including disability-related grants. SASSA officials interface with clients (i.e. the general public), doctors, social workers, hospital management, government officials from multiple departments, and others in the process of grant administration. SASSA designs its own processes and forms internally, and specific arrangements vary somewhat across provinces. These guidelines are formulated by managers and administrators and tend to focus on daily procedures and injunctions against fraud. In contrast, there is a noticeable lack of any guidance regarding disability. According to the Social Assistance Act, the CDG assessment is supposed to evaluate the child’s need for ‘permanent care and/or support services’ on the basis of their impairment(s) (South African Parliament 2004, p. 10). Despite some variation, the assessment process adopts a medical model of disability across the country. There is a focus on grading the impairment level of the applicant with little or no emphasis on 152

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consideration of the child’s day-to-day life or access to necessary resources. Children, especially, tend to be assessed for the severity of their impairment rather than the child’s particular context and the specific manifestation of their disability. Currently, only medical doctors are permitted to conduct assessments, although local researchers, activists, and clinicians suggest that allied health workers are usually better trained to identify and assess disability in context. Attempts to standardise and bring disability grants assessments in line with the broader conception of disability represented in the CRPD have so far stalled or failed (Kelly 2016). According to interview respondents who had been personally involved in these processes, these failures were because of a lack of resources, insufficient infrastructure for service delivery, and interdepartmental tensions. Using a social relational model of disability, the CRPD describes disabling barriers as the outcome of the interactions between an individual with impairment(s) and their (social, economic, attitudinal, and political) environment, rather than disability being the result of decontextualised individual pathology (United Nations 2007). The medicalised CDG assessment process currently contravenes the CRPD. Assessments are also inconsistent with the CRC recommendation that each child be considered individually and that social security provisions be tailored to the resources available to the child for their care (United Nations 1989). As the CDG represents such a significant proportion of the state support available to disabled children in SA, it is especially important that the grant’s assessment process is well-aligned with the CRC and CRPD. Choices about changes to the public non-contributory system must be made wisely and cautiously, as this enormous programme is funded by the tiny segment of the population that pays tax. Grants are under constant public scrutiny. However, these are not optional provisions—they are a matter of human rights. Additional resource allocation will also be crucial for progress, and as the government has noted, the CDG ought to sit within a ‘basket of [complementary] services’ (DPME 2021, p. 82). These improvements will require more and better collaboration between various government departments taking the lead on interventions (such as the DSD and the Department of Health), but these departments must be appropriately supported by all spheres of government in order to enhance impact (Philpott and Muthukrishna 2019).

Social Assistance for Disabled Children and Their Families—Not Enough and Too Hard to Get To At the end of September 2021, there were 148,295 beneficiaries in receipt of the CDG, which accounts for 0.8% of the grants distributed nationally (SASSA 2021). In SA, the two most commonly used childhood disability prevalence estimates are considered under- and over-estimates in turn. There is also a poor understanding of the diverse spectrum of childhood disability, and the 2011 census, the most commonly referenced estimate, did not gather data for the under-5 population (Philpott and McKenzie 2017). This lack of comprehensive prevalence data makes it difficult to assess the scale of exclusion errors or unmet need. However, there is sufficient 153

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evidence and consensus among local researchers and civil society representatives that the rate of access to the CDG is too low (Kidd et al. 2018). The presidency’s MediumTerm Strategic Framework 2019–2024 echoes this concern, noting that ‘[c]hildren with disabilities are . . . struggling to access the care dependency grant, largely due to the highly stringent application and medical assessment processes’ (DPME 2020, p. 120). By the time an updated 2021 version of this report was published, disabled children were no longer highlighted as a specific interest group (DPME 2021). Although Covid-19 has interrupted and delayed strategic planning, this is emblematic of the aforementioned deprioritisation of disabled children in SA, who, if anything, are likely to need more support following the pandemic. Qualitative evidence from my primary research highlighted various difficulties in gaining access to the grant, some of which were detailed in a prior article (Trafford and Swartz 2021). Government officials and civil society representatives pointed to high rates of unregistered births locally as a significant barrier to access, a problem also reported elsewhere as a barrier to various forms of government and other support (Hoag 2010). Respondents with clinical expertise reported that due to delays in establishing and strengthening systems for identification and linkage to health and rehabilitative care, children are not initiated onto the CDG at an early-enough age to facilitate optimal impact and development. This pattern of late access was reflected in statistics from November 2021 (see Table 9.1), which show that far fewer children in the 0-to-4-year-old age group receive grants than those in the 5-to-17-year-old age group (SASSA 2021, p. 35). Many factors may influence this pattern, including more lenience in the past and the noted difficulties in connecting with the very young disabled population due to weak data collection (Philpott and McKenzie 2017). The cost and difficulty of obtaining transport for multiple visits back and forth between grant offices and health facilities also serve as a potent barrier to access (Schneider et al. 2011; Fourie 2017; Pretorius and Steadman 2018). For caregivers of disabled children, travel costs are likely to be much higher than average because they are required to make more trips back and forth and may have to take their mobilitylimited children with them. In our interview, a mother of a child with cerebral palsy explained how difficult it is to persuade the driver of one of SA’s (ubiquitous but notoriously hurried) minibus taxis to wait while a child is moved out of or into their mobility device or onto or off their mother’s back. Caregivers are often forced to use expensive private transport instead, which can rapidly deplete the little funds they may have available or significant amounts of the CDG itself, if they have managed to gain access (Letsie 2016). Even once caregivers do manage to gain access to the CDG, there is a strong sense from primary research in this study and secondary sources (Dimhairo 2013; Letsie 2016) that the amount provided falls far short of covering the direct and indirect costs entailed by caregivers of disabled children. The CDG amount is four times higher than the poverty-alleviation child support grant (CSG) available to caregivers of non-disabled poor children, but in the context of insufficient public service provision, individuals are often forced to pay out-of-pocket for private services. Such ‘catastrophic’ (Liu et al. 2019) expenditure places extreme pressure on the household 154

The Care Dependency Grant in South Africa Table 9.1 The number of children in receipt of the CDG according to age group (adapted from the 2021 statistical report of the South African Social Security Agency)

Reference: SASSA 2021. Sixth Statistical Report (payment system period September 2021). Statistical Reports—Strategy and Business Development. [Online] [Accessed on 19 November 2021]. Available from: www.sassa.gov.za/Pages/Statistical-Reports.aspx.

and may displace fundamental needs like food, clothing, and education. In addition, as respite and disability-appropriate care services are not usually available to parents in poorer communities or rural areas, respondents in my study and in other qualitative research (Letsie 2016) indicated that the grant commonly serves as income replacement so that a parent, usually a mother, can stay at home and care for their disabled child. In families with minimal or no other income (the majority of CDG recipients), the grant is reportedly often distributed throughout the household. This is a common pattern for cash transfers in SA, where unemployment rates are so high that finding work is a daunting task, and there may be many people in the household who 155

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need support (Francis 2020). The country’s social assistance programme does not yet seem to be adequately reaching or supporting this profoundly underserved group and their families enough to have a positive and sustained impact.

Battling Stigma and Changing Attitudes Attitude change is important, but it requires considerable political will and can be slow and challenging. Even in the relatively well-resourced United Kingdom, around 45% of schools in one study reported that they did not feel that they had enough time to encourage positive attitudes towards disabled people in their curriculum. These schools worried that making space for such adjustments would mean removing another teaching area (Beckett and Buckner 2012). This attitude is reminiscent of the peculiar implicit resistance described by a national government official during interviews for my CDG study. This research respondent, who had worked in a government social development department for many years, felt that disabled laypeople were excluded from policy planning because officials feared that if they conducted the public consultations mandated by the Constitution, they would be forced to roll out costly programmes or interventions. In various spheres of society, both in SA and internationally, there seems to be a widely held perception that there is no space or sufficient time or money for the inclusion of disabled children. Ignorance and negative beliefs about disability contribute to disabled children’s lack of access to their human rights in SA (Philpott and McKenzie 2017; ShungKing et al. 2019). Disabled children are often seen as passive, incapable, and even pitiful, rather than as autonomous rights-holders. These conceptions must be actively and urgently challenged, partly because they limit the ways that non-disabled decision-makers think about disabled people and make provision for their needs. Useful precedents were set during SA’s extensive HIV/AIDS de-stigmatisation programmes, some of which were state-funded (Stangl et al. 2013; Howell et al. 2017). These efforts have not eliminated discrimination, but they have been remarkably helpful in improving acceptance and social inclusion in the country with the world’s highest HIV prevalence. De-stigmatisation campaigns make a clear statement about the importance of protecting the rights of all people regardless of illness, impairment, or identity. For negative perceptions to change, disabled children must be made more visible. The profound invisibility of disabled children was a consistent theme throughout reviews of the local secondary evidence and during in-depth interviews in SA. Even in wealthier communities, but especially in poorer ones, this invisibility can mean a literal absence from shared spaces due to inaccessible built environments or homes (Trafford et al. 2021). This invisibility may be compounded by parents keeping their disabled children home to try and protect them from ridicule or prejudice (Khan et al. 2020). Disabled children are also ‘invisible’ in much of the social protection literature. There is a huge body of research on both the child support grant (CSG) for the nutritional support of children living in poverty and on the adult disability grant (DG) for income support for unemployed disabled adults. Despite clear 156

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synchronicities with both the CSG and the DG, the CDG and its beneficiaries are generally excluded from in-depth analyses of the grants programme. Only 2 masters studies take the CDG as their primary focus (Dimhairo 2013; Letsie 2016). The continued invisibility of these children in society, academic research, and policy is an impediment to the disabled child’s social participation and proper integration in an expressly non-discriminatory country.

South Africa in Context—Considerations for Similar Economies It is useful for SA and similar economies, such as India and countries in the Latin America and the Caribbean (LAC) region, to learn from one another in trying to design and implement strong social protection programmes. Like SA, these countries have high rates of poverty and unemployment, reasonably democratic but underresourced public sectors, a deeply unequal distribution of wealth, ethnically and culturally diverse populations, and long, violent histories of colonial oppression. Many of these countries have rolled out social protection schemes (Leisering 2020), but policy and implementation flaws can restrict efficacy, efficiency, and most importantly, access and appropriateness for their beneficiaries. Recent reviews indicate, for example, that India’s social protection programming for disabled children has limited coverage, widespread inclusion and exclusion errors, and insufficient transfer amounts aimed at the lowest poverty line, against best practice recommendations (Wapling et al. 2021). In the LAC region, efforts to extend social protection to disabled children and adolescents have begun, but limitations include data weaknesses, onerous conditionalities, and poor linkage to other opportunities for support and care (Ullmann et al. 2021). In addition, many of the transfer amounts are not adjusted for the higher costs associated with disability, coverage is much too low, and there is a dearth of applicable research and evidence (Ullmann et al. 2021). SA shares some of the difficulties cited previously but has a comparatively strong system in place. Transfers are targeted, unconditional, and adjusted (although not sufficiently) for the additional costs of disability. However, as this chapter shows, implementation is a serious challenge. Following are a range of reflections generated from this study example that may be applicable in similar economies. In light of the ever-increasing ‘austerity’ cuts to public budgets in wealthier countries over the last two decades, these insights may also be useful for counterparts in the global north. Signatory countries must adopt models for the assessment of childhood disability for social assistance that are compatible with the CRPD. Ensuring assessment models and high-level commitments are aligned is admittedly difficult everywhere, even in better-resourced countries (cf. Porter, Pearson and Watson 2021). But it is nonetheless critical. It is also important that people who work in the administrative or bureaucratic aspects of service provision for disabled children and their families are given some disability-related training and a firm reorientation so that they understand the rights of these children. At a societal level, work ought to be done to upgrade systems for inclusion and to ‘retrain’ society in general, particularly non-disabled people 157

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(Wapling et al. 2020; Wapling et al. 2021; Ullmann et al. 2021). This work can happen throughout the life course, but the schooling period is a particularly powerful moment for interventions to shift norms and expectations, as long as this is done with care (Beckett 2009; Beckett and Buckner 2012). Finally, the child’s right to play, to spend time with their family, and to interact extensively with their wider community is also enshrined in the CRC. These rights are just as important but are often excluded from discussions about rights and access, especially in underserved contexts, where issues of basic survival generally feel more urgent. I acknowledge that, by focusing on a cash transfer in this chapter, I have also taken a narrow view of the diversity of disabled children’s needs and have thus omitted other important aspects of their lives, some of which are valuably explored in other chapters in this handbook. There is an argument to be made that children with improved social protection will be more likely to access these rights, which may be perceived as less urgent, but it is crucial that those of us writing about childhood disability continue to assert and emphasise the disabled child’s right to opportunities for disability- and age-appropriate play, recreation, and socialisation. These aspects of life are the right of every child, and they must not fall off the agenda.

Conclusion Although SA has a relatively strong social assistance (grants) programme ‘on paper’, close consideration of the programme’s real-world implementation has highlighted numerous weaknesses. In its most recent strategic plan, the South African presidency agreed, noting that there was an urgent need to ‘resolve [the] fragmentation, inefficiencies and misalignments’ that decrease the ‘effectiveness of existing social protection systems and [hamper] government efforts to provide services to those who need them most’ (DPME 2021, p. 82). To date, however, services and interventions for the social protection of disabled children remain deeply uncoordinated. Progress towards compliance with the CRC and CRPD in SA has been lumbering and insufficient, despite the country’s being an early signatory to both treaties. As in many other countries, especially those with limited resources and systemic dysfunction, the ratification of a global rights treaty is clearly only the first (and likely the smallest) step towards achievement of its goals. Implementation is always a critical aspect of the translation of high-level international rights treaties into the realisation of rights in specific country contexts. These high-level commitments also need ‘teeth’ in order to generate real change and impact. In order to get closer to the vision enshrined in the CRC and CRPD, regular and honest investigations ought to be conducted into the implementation of human rights interventions for disabled children. Ideally, mechanisms should also be established to incorporate the findings of these investigations into practice and to improve accountability. State-funded social protection programmes may assist in addressing some of the extreme rights violations faced by disabled children living in poverty worldwide, provided that such programmes are ‘accessible, . . . sufficient to meet needs and . . . comprehensive and coordinated with other social services’ (Ullmann et al. 2021). 158

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Cash transfers on their own seem to be insufficient for accelerating access and participation at the rates required to obtain equity for disabled individuals in most LMICs (Trafford and Swartz 2021). The efficacy of these transfers may be greatly increased if they are embedded within a system of intersectoral service delivery and informed by a broader conception of disability. These sorts of changes will require strong political will, coherent and decisive governance, proper budgetary allowances, and strong monitoring and accountability mechanisms. This case study also shows that while it is important to study policies, it may be just as or even more important to consider who is implementing the policy, the relationship between different workers at different agencies or departments, and the nature of interdepartmental links or tensions. Devolved democratic government systems have been lauded for their capacity to increase citizen participation, improve the speed and efficacy of service delivery, and decrease costs and administrative duties to the national (central) government (Conyers 2007). However, since most policy is designed by the national government and then devolved to provincial or municipal governments for implementation, access and participation on this model can vary considerably according to context and local power structures (Mbatea 2017). In South Africa, where devolved governance has been in place since the mid-1990s, wide differences exist between provinces in terms of population size, economic and administrative capacity, and levels of rurality or urbanity. The ongoing effects of apartheid, contemporary proliferation of labour migration to urban centres and recent corruption and misuse of public funds have deepened the unfair distribution of resources across the country. The devolved model may also be limiting progress toward the achievement of equal rights for disabled children. The South African Constitution stipulates that socioeconomic rights be delivered based on ‘adequate resources’ and according to the principle of ‘progressive realisation’. This declaration has sometimes been (mis)used to rationalise government’s inadequate service delivery to vulnerable populations. In fact, section 28 of the same Constitution notes that children are an exceptional population group and that systems for their protection and upliftment ought to be immediately implemented (Chenwi 2013). A more forceful approach, which is financially and administratively supported by central government, may be necessary for rapid progress needed toward equal rights for the disabled child. Chenwi, L. 2013. Unpacking ‘progressive realisation’, its relation to resources, minimum core and reasonableness, and some methodological considerations for assessing compliance. De Jure (Pretoria) 46(3), pp. 742–769. Conyers, D. 2007. Decentralisation and service delivery: Lessons from sub‐Saharan Africa. IDS Bulletin 38(1), pp. 18–32. [online] [Accessed on 19 April 2022] Available from: https://bulletin.ids.ac.uk/index.php/idsbo/article/view/888. Mbatea, M. 2017. Decentralisation, governance and accountability: Theory and evidence. Journal of African Democracy and Development 1(2), pp. 1–16.

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Acknowledgements Grateful thanks to my supervisor, Professor Leslie Swartz, for his guidance and input. The author’s time and all primary research presented in this chapter were funded in full by a Wellcome Trust Doctoral Studentship (217821/Z/19/Z). For the purpose of open access, the author has applied a CC-BY public copyright licence to the final published version of this chapter, in accordance with the Wellcome Trust’s mandates.

References Adams, L. 2020. Inclusion counts: Disability data tracker a data collection and advocacy guideline for organisations of persons with disabilities—Spotlight on adequate standard of living and social protection. London: Leonard Cheshire. Banks, L. M., Kuper, H. and Polack, S. 2017. Poverty and disability in low- and middleincome countries: A systematic review. PLoS ONE 12(12), e0189996. Beckett, A. E. 2009. ‘Challenging disabling attitudes, building an inclusive society’: Considering the role of education in encouraging non‐disabled children to develop positive attitudes towards disabled people. British Journal of Sociology of Education 30(3), pp. 317–329. Beckett, A. E. and Buckner, L. 2012. Promoting positive attitudes towards disabled people: definition of rationale and prospects for anti-disablist education. British Journal of Sociology of Education 33(6), pp. 873–891. Dimhairo, P. 2013. Care Dependency Grants in a South African township: An assessment of access, challenges and contradictions in Bophelong, Gauteng (MA Thesis), Fort Hare, University of Fort Hare. DPME. 2020. Medium-Term Strategic Framework 2019–2024. Pretoria: South African Department of Planning Monitoring and Evaluation (DPME). DPME. 2021. Revised Medium-Term Strategic Framework 2019–2024: Toward the 2030 National Development Plan. Pretoria: South African Department of Planning Monitoring and Evaluation (DPME). Ekberg, K., Ekberg, S., Weinglass, L., Herbert, A., Rendle-Short, J., Bluebond-Langner, M., Yates, P., Bradford, N. and Danby, S. 2022. Attending to child agency in paediatric palliative care consultations: Adults’ use of tag questions directed to the child. Sociology of Health & Illness 44(3), pp. 566–585. Elphick, J., De Sas Kropiwnicki, Z. O. and Elphick, R. 2015. “Our children have the right to an education too”: Strategies employed by Orange Farm caregivers of children with disabilities in pursuit of the right to a basic education. Disability, CBR and Inclusive Development 26(4), pp. 101–116. Fall, F. and Steenkamp, A. 2020. Building an inclusive social protection system in South Africa. OECD Economics Department Working Papers, No. 1620. [Online] [Accessed on 17 March 2022] Available from: https://doi.org/10.1787/e01d1e09-en. Fourie, M. 2017. Occupational therapy association of South Africa position statement on rehabilitation. The South African Journal of Occupational Therapy 47(2), pp. 53–54. Fragoso, K. P. 2021. In-cash Transfers: From passive to empowered beneficiaries in the Global South. Social Policy and Society, pp. 1–17. Francis, D. 2020. Unemployment and the gendered economy in South Africa after Covid-19. Transformation: Critical Perspectives on Southern Africa 104(1), pp. 103–112. Grue, J. 2021. The high cost of living in a disabling world. The Guardian. [Online], 4 November [Accessed on 12 December 2021] Available from: www.theguardian.com/society/2021/ nov/04/the-high-cost-of-living-in-a-disabling-world. Hanlon, J., Barrientos, A. and Hulme, D. 2010. Just give money to the poor: The development revolution from the global South. Sterling: Kumarian Press.

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The Care Dependency Grant in South Africa Hoag, C. 2010. The magic of the populace: An ethnography of illegibility in the South African immigration bureaucracy. Political and Legal Anthropology Review 33(1), pp. 6–25. Howell, A., Mills, C. and Rushton, S. 2017. The (Mis)appropriation of HIV/AIDS advocacy strategies in Global Mental Health: Towards a more nuanced approach. Globalization and Health 13(1), p. 44. Kelly, G. 2016. Conceptions of disability and desert in the South African welfare state: The case of disability grant assessment (PhD Thesis), Cape Town, University of Cape Town. Khan, G., Makoae, M., Fluks, L. and Mokhele, T. 2020. Service providers’ perceptions of families caring for children with disabilities in resource-poor settings in South Africa: Conceptualizing well-being and exploring its link to poverty and inequality reduction in South Africa. Child & Family Social Work 25(4), pp. 823–831. Kidd, S., Wapling, L., Bailey-Athias, D. and Tran, A. 2018. Social protection and disability in South Africa. Development Pathways Working Paper: July 2018. [Online] Orpington: Development Pathways. [Accessed on 20 July 2019] Available from: www.developmentpathways. co.uk/publications/social-protection-and-disability-in-south-africa/. Kuper, H., Davey, C., Banks, L. M. and Shakespeare, T. 2020. Trials and tribulations of collecting evidence on effectiveness in disability-inclusive development: A narrative review. Sustainability 12(18), p. 7823. Leisering, L. 2020. Social cash transfers in the global South: Individualizing poverty policies In B. Greve (ed.), Routledge international handbook of poverty. Abingdon: Routledge, pp. 317–327. Letsie, M. T. D. 2016. The utilisation of the care dependency grant for the support and care of disabled children among female caregivers in Orange Farm (MA Thesis), Johannesburg, University of Johannesburg. Liu, H., Zhu, H., Wang, J., Qi, X., Zhao, M., Shan, L., Gao, L., Kang, Z., Jiao, M., Pan, L., Chen, R., Liu, B., Wu, Q. and Ning, N. 2019. Catastrophic health expenditure incidence and its equity in China: A study on the initial implementation of the medical insurance integration system. BMC Public Health 19(1761), pp. 1–12. McKenzie, J. and Chataika, T. 2017. Supporting families in raising disabled children to enhance african child development. In K. Runswick-Cole, T. Curran and K. Liddiard (eds.), The Palgrave handbook of disabled children’s childhood studies. London: Palgrave Macmillan, pp. 315–332. Philpott, S. C. and McKenzie, J. 2017. Welcoming all children: The inclusion imperative. In L. Jamieson, L. Berry and L. Lake (eds.), South African child guage. Cape Town: Children’s Institute, University of Cape Town, pp. 84–90. Philpott, S. C. and Muthukrishna, N. 2019. A critical analysis of key policies shaping services for young children with disabilities in South Africa. Education as Change 23(1), pp. 1–23. Porter, T., Pearson, C. and Watson, N. 2021. Evidence, objectivity and welfare reform: A qualitative study of disability benefit assessments. Evidence & Policy: A Journal of Research, Debate and Practice 17(2), pp. 279–296. Pretorius, C. and Steadman, J. 2018. Barriers and facilitators to caring for a child with cerebral palsy in rural communities of the Western Cape, South Africa. Child Care in Practice 24(4), pp. 413–430. SAHRC. 2018. Report of the North West provincial investigative hearing into lack of safety and security measures in schools for children with disabilities. [Online] Braamfontein: South African Human Rights Commission (SAHRC). [Accessed on 20 April 2022] Available from: www.sahrc. org.za/index.php/sahrc-publications/hearing-reports. Saloojee, G., Phohole, M., Saloojee, H. and Ijsselmuiden, C. 2007. Unmet health, welfare and educational needs of disabled children in an impoverished South African peri-urban township. Child: Care, Health and Development 33(3), pp. 230–235. SALRC 2020. Issue Paper No. 39, Project 148: Domestication of the United Nations Convention on the Rights of Persons with Disabilities. [Online] Pretoria: South African Legal Reform

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Zara Trafford Commission (SALRC). [Accessed on 20 November 2021] Available from: www.justice. gov.za/salrc/ipapers.htm. SASSA. 2021. Sixth Statistical Report (Payment system period September 2021). Statistical reports—Strategy and business development. [Online] [Accessed on 19 November 2021] Available from: www.sassa.gov.za/Pages/Statistical-Reports.aspx. Schneider, M., Waliuya, W., Munsanje, J. and Swartz, L. 2011. Reflections on Including Disability in Social Protection Programmes. IDS Bulletin 42(6), pp. 38–44. Shung-King, M., Lake, L., Sanders, D. and Hendricks, M. 2019. South African Child Gauge 2019: Child and Adolescent Health—Leave no one behind. Cape Town: Children’s Institute, University of Cape Town. South African National Assembly. 2020. Consideration of Report of Portfolio Committee on Basic Education on South African Human Rights Commission Report on: Investigative hearing into lack of safety and security measures in schools for children with disabilities in South Africa. Cape Town: South African National Assembly (People’s Assembly), South African Parliament. South African Parliament. 2004. Social Assistance Act 13 of 2004. Pretoria: South African Presidency, Parliament of South Africa. Stangl, A. L., Lloyd, J. K., Brady, L. M., Holland, C. E. and Baral, S. 2013. A systematic review of interventions to reduce HIV‐related stigma and discrimination from 2002 to 2013: how far have we come? Journal of the International AIDS Society 16(3Suppl 2), p. 18734. The Right to Education for Children with Disabilities Alliance. 2016. Alternative Report to the UN Committee on the Rights of PWD in response to SA’s Baseline Country Report, March 2013, on the UN CRPD, with particular reference to the provisions of Article 24. UN Treaty Body Database. [Online] [Accessed on 15 April 2022] Available from: https:// tbinternet.ohchr.org/_layouts/15/TreatyBodyExternal/TBSearch.aspx. Trafford, Z. and Swartz, L. 2021. The Care Dependency Grant for children with disabilities in South Africa: Perspectives from implementation officials. Development Southern Africa., pp. 1–14. Trafford, Z., Van Der Westhuizen, E., McDonald, S., Linegar, M. and Swartz, L. 2021. More than just assistive devices: How a South African social enterprise supports an environment of inclusion. International Journal of Environmental Research and Public Health 18(5), p. 2655. Ullmann, H., Atuesta, B., Rubio García, M. and Cecchini, S. 2021. Non-contributory cash transfers: An instrument to promote the rights and well-being of children with disabilities in Latin America and the Caribbean. [Online] Santiago: Economic Commission for Latin America and the Caribbean (ECLAC) [Accessed on 12 February 2022] Available from: www.cepal.org/ en/publications/46747-non-contributory-cash-transfers-instrument-promote-rights-andwell-being-children. UN Committee on the Rights of Persons with Disabilities. 2018. Concluding observations on the initial report of South Africa (CRPD/C/ZAF/CO/1, 20th Session, 23 October 2018). [Online] Geneva: United Nations Committee on the Rights of Persons with Disabilities. [Accessed on 12 April 2022] Available from: https://digitallibrary.un.org/record/1650375?ln=en. United Nations. 1989. Convention on the rights of the child [Accessed on 12 October 2021] Available from: www.ohchr.org/en/professionalinterest/pages/crc.aspx. United Nations. 2007. Convention on the rights of persons with disabilities and optional protocol [Accessed on 12 October 2021] Available from: www.un.org/disabilities/documents/ convention/convoptprot-e.pdf. United Nations. 2015. Transforming our world: The 2030 agenda for sustainable development. A/RES/70/1. [Online] [Accessed on 13 April 2022] Available from: https://sdgs. un.org/2030agenda. United Nations Children’s Fund. 2021. Seen, counted, included: Using data to shed light on the well-being of children with disabilities. [Online] New York: United Nations Children’s Fund (UNICEF). [Accessed on 17 February 2022] Available from: https://data.unicef.org/ resources/children-with-disabilities-report-2021/.

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The Care Dependency Grant in South Africa Visagie, S., Scheffler, E., Seymour, N. and Mji, G. 2020. Assistive technology service delivery in South Africa: Conceptualising a systems approach. In H. Kathard, A. Padarath, R. Galvaan and T. Lorenzo (eds.), South African Health Review. Durban: Health Systems Trust, pp. 119–127. Walsham, M., Kuper, H., Banks, L. M. and Blanchet, K. 2019. Social protection for people with disabilities in Africa and Asia: A review of programmes for low- and middle-income countries. Oxford Development Studies 47(1), pp. 97–112. Wapling, L., Schjoedt, R. and Kidd, S. D. 2020. Social protection and disability in Brazil. Development Pathways Working Paper: February 2020. [Online] [Accessed on 24 January 2022] Available from: www.developmentpathways.co.uk/publications/social-protectionand-disability-in-brazil/. Wapling, L., Schjoedt, R. and Sibun, D. 2021. Social protection and disability in India. Development Pathways Working Paper: February 2021. [Online] [Accessed on 19 January 2022] Available from: www.developmentpathways.co.uk/publications/social-protection-anddisability-in-india/.

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Children’s Voice

10 CHILDREN’S RIGHTS, ARTS-BASED METHODS, AND GRAMSCI’S COMMON SENSE The Possibilities of Freedom Francesca Bernardi Introduction This chapter explores the possibilities of a rights-respecting and rights-engaging methodology that favours and values children’s expressive freedom and autonomy. Such a methodology involves recognising, documenting, and analysing alternative narratives and embodied forms of agency that help dismantle representational, aesthetic, and sociological hierarchies. Despite the United Nations Convention on the Rights of the Child (1989) (CRC) and the Convention on the Rights of Persons with Disabilities (2008) (CRPD), researchers can be tentative in establishing a place for disabled children which honours the right to freedom of expression. When research practices and social conventions merge, disabled children can be excluded, discursively and methodologically; thus, their contributions to researching childhood and children’s cultures are withheld or lost. This loss becomes apparent in the tendency to position children in distinct scholarly fields, encircling and categorising their social experiences a priori, crystallising the idea that some children are socially active—in their life circumstances—while others are marked as indifferent (Curran and Runswick-Cole 2014; Davis et al. 2017). This tendency, in turn, uncovers the extent to which researchers are prepared to challenge and contest the absence of disabled children’s stories in the study of childhood. This absence foregrounds ableist omissions, their impact on the breath of research with disabled children—their self-expression and aspirations—and the prevalence of medical and educational experiences, assimilating disabled children in a separate homogeneous group, within a stifling minority discourse of need and vulnerability. DOI: 10.4324/9781003056737-14

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Such omissions become internalised (by researchers and other social actors) as practical and necessary, reducing participation to human abstraction. I use the notion of ‘human abstraction’ to capture the systemic tendency to qualify and value knowledge that is produced according to fixed research expectations that signal an emphasis on outcomes and functionalism rather than on agency and processes of self-expression born of autonomy. Moreover, methods based on ableist assumptions propagate the experiences of children who participate in research using conventional forms of communication while silencing the stories of others and prolonging the effects of social exclusion (Thompson et al. 2020; Wickenden and Kembhavi-Tam 2014). In research on experiences of autism, for example, societal assumptions and ableism can interfere with recruitment and methodological decisions, highlighting persistent communication orthodoxies and inflexibility, diverting possibilities for children to participate by exploring, embodying, and re-presenting their identities beyond language and diagnosis (Bernardi 2019; McGuire 2016; Scott-Barrett et al. 2019). Resisting these ‘orthodoxies’ entails challenging habits that withhold diversity in research participation and systematically deny disabled children’s right to freedom of expression. Understanding the relationship between research and the social structures in which research is rooted is central to this work. By rebalancing the means through which knowledge is imagined, represented, and esteemed, this chapter is an invitation to blur the boundaries of scholarly distinctions that separate children, to expand the scope of childhood sociology and reimagine the use of creative methods in research with disabled children, thus engaging with alternative and multiple literacies and sensibilities through knowledge generation that engages children’s right to freedom of expression. It is hoped that this contribution to the handbook can spark critical discussion on research with disabled children, which involves reviewing some of the principles set out in the CRC and how these ought to extend to the role and civic potential of research/ers.

Ethical and Civic Participation: Thoughts on a Gramsci-Informed Arts-Based Methodology Disabled children’s participation in research can be oriented towards harmonising the CRC and CRPD if approached with care and civic and ethical reflexivity. And as a reminder that all children are rights-holders, I use children and disabled children interchangeably throughout the chapter. Participation should engage diverse forms of knowledge production that are together enjoyable and ethical, part of an evolving holistic process of (self-)discovery that is responsible and responsive; as such, it may be realised only when all children are seen, and respected, as capable social actors (Alderson 2017; Terzi 2014; Thomas and Stoecklin 2018). Yet a tendency to harness participation by prioritising directive methods demonstrates a violent rationing of disabled children’s freedoms and the vulnerability of children’s rights when these are redacted through what might be termed ‘methodological practicality’ (Bernardi 2021).

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Discourses around practicality, its apparent inevitability and fixedness, evoke Gramsci’s theory of ‘common sense’. According to Gramsci, ‘common sense’ is ultimately ‘the most widespread conception of life and morals’ (Gramsci 2011/1926, p. 173), which evolves into a set of habitual practices that is adopted uncritically. ‘Common sense is the folklore of philosophy and stands midway between real “folklore” (that is, as it is understood) and the philosophy, the science, the economics of the scholars.’ It outlines a tacit acceptance of the social order as the way things are. To espouse ‘the way things are’—uncritically—can erode efforts to bring about social change through research. In fact, methodological ‘common sense’ disguised as practical necessity must be rigorously scrutinised and unpacked (Gramsci 1992). By creating a context in which children adopt arts-based methods liberally and creatively, where the rights to freedom, recognition, and respect are protected, it is possible to transgress a methodological common sense that works in two ways: 1. It maintains a discourse of practicality that serves to justify using directive methods and limiting the autonomy of disabled children in research. 2. It frames arts-based research as both impenetrable and elusive. ‘Methodological transgression’ is the perspective from which I approach the use of arts-based methods with disabled children, fostering the conditions that honour children’s rights and the unforeseeable and multiple possibilities of self-expression and sense making that children choose to explore.

Children’s Right to Freedom in Research Freedom of expression is a right, enshrined in Article 19 of the Universal Declaration of Human Rights (UN 2015/1948), Article 13 of the CRC, and Article 21 of the CRPD. However, its role in methodological plans and practices is often obfuscated, influencing both recruitment and participation, ‘with a particular impact on disabled children’ (Martin and Franklin 2010, p. 99; Wickenden and Kembhavi-Tam 2014). Whether explicit or implicit, an attachment to directive methods, regulation, and instruction can impact the quality and value of research participation for disabled children, inevitably producing a closed view on children’s cultures and limiting the potential to learn from and document alternative ‘pictures’. Conversely, when the conditions that favour autonomy are valued, embodied, and respected, it is possible to engage with the experiences and views that children choose to manifest (to adults, scholars, and the wider society) and thus reimagine and revise methodological practices, upholding rights that are integral to such process. If meaningful participation and freedom of expression are to be enjoyed and witnessed, research interactions must evoke spontaneity and articulations that are imaginative and cannot be prescribed. A combination of creative and dialogic literacies in research with children can be useful in developing affirmative ways of expressing and being, to understand personal views and their societal context, which are vital if research is to function as a stimulus for social change.

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Research of this kind requires malleable and evolving methods (and attitudes) that should not be based on performative judgements (on children) ‘inherited’ from other spaces. The conceptual and practical scope of this work is especially relevant to the principles of Article 13 (para. 1) of the CRC (UN 1989) and its inherent wider aims. The child shall have the right to freedom of expression; this right shall include freedom to seek, receive and impart information and ideas of all kinds, regardless of frontiers, either orally, in writing or in print, in the form of art, or through any other media of the child’s choice. Drawing on a rights-respecting cross-cultural study, conducted in central Italy and north-west England,1 in which 16 children (6 to 10 years old) with diagnoses of autism established and explored re-presentations of their identities (Bernardi 2019), the chapter presents the possibilities of adopting an ethic of expressive freedom and non-directive methods which invited the emergence of children’s observations, values, and hopes. Here, an ethic of expressive freedom is taken to signify both an objective of ethical research and the process of participating with children, documenting and respecting the depth and range of children’s self-presentation in a space where autonomy is protected and explicit. This type of rights-respecting research revives the status of children’s priorities and agency without subscribing to adult literacies and direction while addressing the potential of disrupting traditional research asymmetries. In order to value and validate the recommendations of the CRC, it is important to consider research—and participation within it—as integral to society. This requires framing research as a site for civic, political, and educational action that is secured by intellectuals who cannot be apart from society (Gramsci 1992) or (further) disenfranchise its underrepresented members. This view serves as a reminder that the efforts of researchers, the contributions of participants, and the potential for social change are all entangled with societal systems. It calls for an understanding of research that engages critically with the structural hierarchies of recruitment and examines the terms of participation and representation made available to children and the role that adults/researchers can play in honouring or preventing freedom of expression in sites for knowledge production. These civic, social, political, and methodological intentions require a further premise to be present. For children’s rights and agency to materialise in research, it is necessary to further develop connections with contemporary childhood sociology, to decolonise and reframe the scope of disability studies and the study of children’s cultures more broadly (see Thompson et al. 2020). ‘Children have the right (like other social actors) to exercise agency in a network of social encounters and spaces’, including research (Bernardi 2019, p. 30), yet persistent tensions binding age-related norms with research participation that favours direction over autonomy continue to shape the extent to which children are valued as social actors in their own right (Hendrick 2008; Young-Bruehl 2012). Research with children has been described as increasingly participatory, with practices and methods favouring recognition and ‘voice’ (Thomas 2017; Thomas 170

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and Stoecklin 2018). The prevailing methodological premise is that researchers plan and initiate field activities with collaborative intent, with a view to involve children meaningfully and engage in a type of dialogue that is culturally sensitive and ethically rigorous (Corsaro 2018). Accordingly, methods are designed to elicit children’s views, taking into account context and age and an assumed ability to contribute to the research (Christensen and James 2017). Such methodological premises may become problematic in research with disabled children (Corker and Davis 2002; Wickenden and Kembhavi-Tam 2014). This is fundamentally a matter of habit (or common sense, to use Gramsci’s terms) and can be redressed and resisted, prompting considerations on what might be possible when premeditated expectations and direction are withheld from being constituting aspects of methodological decisions in research with children (see also Spiteri’s chapter on Clark and Moss’s Mosaic approach in this volume). On the one hand, the literature demonstrates it is possible to disrupt the borders and boundaries around disability in research (Goodley and Runswick-Cole 2016), to rupture perceptions of disabled lives (Purcell-Gates and Fisher 2017) and the practices affecting disabled children’s participation (Bernardi 2021; Pluquailec 2018; Tisdall 2012). On the other hand, the choice of directive methods as a practical and rational (ab)solution signals the impact of societal assumptions on researchers’ ambition to engage disabled children in affirmative ways. Recruitment decisions, consequent exclusions, and omissions are anchored on how verbal communication and non-verbal expression are perceived (Loyd 2013). Further, access to participants may be sought within established communities, inadvertently or deliberately, amplifying the stories of children in disability/family support networks who may also enjoy a secure socioeconomic status within easy-to-reach localities (Cascio et al. 2021; Nicolaidis et al. 2011), ‘flattening’ intersectional characteristics (Luft 2009) and creating subgroups that remain silent and oppressed. Or to put it in other words, research practices can contribute to marginalising those individuals who are considered too difficult to involve, foreclosing the possibility of diverse outcomes from the outset (Bernardi 2019; Davis et al. 2017; Ferri and Connor 2014). Participation is determined, imagined, and idealised before entering the field of study. Through unscripted rules, participation is conceived by adhering to particular literacies and an ability to share experiences based on hierarchical understandings of communication and self-expression. If left unquestioned, research can subscribe to valorising verbal interactions, adult-led instructions, and questions which align with researchers’ own abilities (Davis et al. 2017), thus continuing to produce and propagate conventional data. This approach to participation poses ableist premises as the right course, the most reliable route to getting results in a research landscape that contends with time and monetary budgets. These practices are—usually—the tangible outcome of power differentials that are produced, reproduced, and maintained in knowledge generation (Datta 2018). Research too often denies not only children’s right to appropriate the terms of engagement and participation but also a fair representation of their priorities and cultures. Researchers must be prepared to participate in the activities as ‘attentive bystanders’, not as experts, but as recipients, listeners, and observers, with humility 171

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and preparedness to welcome multiple possibilities of self-expression (Alerby and Bergmark 2012). This approach may be considered risky and potentially unproductive due to adults’ reliance on directive tasks (Montessori 1989). A lack of expressive choice and freedom, in the process of knowledge production, can also narrow researchers’ human and intellectual experience, diminishing opportunities to observe revelations, surprises, and authentic sense making. Methodological restrictions, rooted in limiting assumptions around practical challenges, can expose the economic toll on children’s right to participate meaningfully in research (Goodley 2014). Addressing these assumptions involves reviewing the ways in which children are conceptualised in and through research. If children are respected as expert-participants and, as in the examples to follow, artists, then it is possible to confront our ‘economic’ restrictions on expressive freedom (Leavy 2015; Runswick-Cole et al. 2018). ‘Children’s expertise and researcher privilege can this way be re-imaged to forge a productive alliance’ (Bernardi 2019, p. 2).

Some Premises on Using Arts-Based Methods and Analysis The use of arts-based methods in the social sciences has become prolific, involving expressive freedoms and different ways of ‘looking, seeing, and envisioning’ in and through research (Metcalfe 2016, p. 78; Berger 2008). Arts-based methodologies expand the ‘toolkit’ of qualitative enquiry, requiring a critical understanding of the relational and physical spaces from which visual data emerge (Pink 2012), activating different perceptual and generative processes. Arts-based methodologies are social and political practices, and as such, their spatial and relational contours are an integral part of their participatory complexity and potential. ‘A visual methodology accepts a broad view of the nature of knowledge and its sources or influences and need not be bound by disciplinary traditions’ (Metcalfe 2016, p. 81). However, due to both a desire for and lack of consensus on what knowledge production should entail, the expansion of arts-based methodologies can be limited. Disciplinary boundaries and the prescriptive roles within them can also contribute to narrowing the use and accessibility of arts-based methods (Smith 2015). Visual methodologies can be exclusive, focusing more frequently on (adults’) artistic competencies than on the critical generative opportunities of materialising experience to explore and inhabit different forms of sense making and dialogue. This view of art (emergent from predefined expertise) withholds the possibilities of an active involvement of children in spaces where social, aesthetic, and material grammars intersect, affecting, in particular, the engagement of disabled children in creative knowledge production (Bernardi 2020; Penketh 2017). Understanding arts-based methods as vessels for socially engaged research extends the analysis from the ‘purely’ visual to its sociological meaning, which can be unpacked in ways that are productive and resonant. Thus, the aim is not ‘to penetrate into the projected meaning or aesthetic language of the art, but to understand the social discourses from which it stems, to which it reacts, and to whom it presents’ (Huss 2016, p. 84). As noted by Alerby and Bergmark (2012) and Saito (2015, p. 141), the focus 172

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of the analysis when using arts-based methods is not on the subjects participants have depicted but, rather, ‘how they reflected their experiences when the drawings were made’. Rose (2016) and Huss (2016) call this ‘social art analysis’. Accordingly, the analysis is not an interpretation of children’s drawings, paintings, images, or figurative competencies; the focus here is on the flourishing of experience: the interaction between feeling, knowing, making, and participating. This analytical perspective is customary in arts-based research, led and articulated by adults/artists/activists who navigate disciplines and languages that together construct and esteem perceptual and embodied meaning-making. In this chapter, I present examples from the experiential works of a group of marginal, labelled, disabled children to demonstrate the social value of artist/activist practices and discoveries, and how these can be adopted by children, in research. The children taking part in the study attended mainstream primary schools at the time of the field activities, and while situated in different national contexts (culturally relevant pseudonyms are used), the spatial organisation of their schooling showed that all were largely educated in isolation from their peers. This experience highlighted common and varying degrees of children’s membership in educational and familial spaces. None of the children had been told, or knew, about their diagnosis, though some made powerful references to their lessthan-stable opportunities to belong, through imagery and commentaries, which communicated an incisive sense of awareness of differences shaping their social identities (Bernardi 2019). To plan the methodology in partnership, children and parents were involved from the project’s inception, helping to shape the methods, selecting materials, and becoming indispensable members of the process of self-presentation and representation. The entire project involved three types of participatory activities: (1) unstructured interviews with mothers and fathers, (2) photo-elicitation focus groups with school practitioners, and (3) a series of arts-based activities, which I call ‘creative encounters’, with individual children over a period of five months (in each geo-cultural site). For the purpose of the present discussion, I focus on the creative encounters. Children made art freely and with intent while initiating and negotiating interactions, which they led in the process, and ended their activity at a time of their choice. When children entered their art space, created and stocked according to their requests, favourite materials and layout, they demonstrated through gestures, sounds, words, and movement that they were embarking in an activity with pleasure and purpose. Children moved in the space and around the art materials in ways that contributed to communicating meaningful engagement, ‘being’, and mattering. Children defined the terms of our collaboration, sharing discoveries, adapting gestures, pace, and time, to experiment with different visual and tangible tools and communicate human experience. Their creative process appeared to follow a common pattern: appraising and selecting materials, assessing my reaction, and experimental mark-making through movement, interaction, embodiment, sound, and silence. All the children appeared motivated by my readiness to be a part of the experiential activity according to their choices and requests; they articulated observations 173

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of their social realities, their ideas and values, and their interpretations of the world around them. During each encounter, like the children, I wore comfortable clothes, sat on the floor, and removed my shoes. Through visible attentiveness, silence, and playfulness, it was possible to minimise the power differentials and social differences between us, suspending any form of control that children could associate with instruction (Corsaro 2018; Randall 2012) while nurturing trust, safety, and autonomy (Raffety 2015). An important and helpful practice, supporting this ethos, surfaced during the recruitment activities. Children witnessed their parents (and school staff) addressing me by my first name; this was (particularly in the Italian context, where this practice is attuned to an informal linguistic register) a symbolic moulding of my identity, which brought it closer to family ‘talk’ and created a distance between my role and the authority of the ‘school adult’. This way, children had little doubt that they could explore ‘a novel freedom to participate’, away from encounters and activities regulated by adults (Raffety 2015, p. 415). Moreover, by recognising the visible and social asymmetries of research, I could commit to the relational and contextual possibilities of participating with children and engage attentively with the subtle and explicit representations of their views. The creative processes and aesthetic outcomes together became the sight of inquiry, self-presentation, and methodological renewal, as well as the route to witnessing children’s experiences and life worlds. The products and processes of mattering, the narratives, metaphors, and discoveries, elicited the analysis of social and visual themes emerging from children’s experiential and aesthetic activity. In the next section, I introduce the context of these activities and examples of children’s representations, their words, the creative space, and the relational bonds within it.

Creating Spaces for Seeing, Being, and Analysing Children chose where the encounters would take place, and this was consistent for each child. Parents and school staff supported children’s choices by reserving a space for the weekly activities, either in the family home or at school (in Italy, an arts studio was included as a further option). I set up the room and equipment (art resources and tools) in respect of children’s requests, displaying several sheets of drawing paper, a large paper roll, and a supply of art materials (including wet and dry media), ready for use, on the floor space. Over the course of the fieldwork, children spontaneously supplemented these materials by bringing their own drawing mediums, favourite toys, and objects to the art space and occasionally requested to use my camera. Children used materials and tools autonomously, in conventional and original ways, to make marks and objects, inventing, experimenting, experiencing and playing, and interacting intentionally with the space and me. Children who used verbal language gave oral descriptions of their visual activity and sensory and social observations; others used gestures, movement, and song to formulate personal narratives of experience. Witnessing and analysing in this relational space entailed openness and humility towards unpredictable meaning-making. 174

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The creative encounters offered the space to recognise the ways children can summon their views and stories while engaging in a spontaneous activity. Children’s material interactions revealed their understanding of and interest in their role—and that of others—in the world (Alerby and Bergmark 2012; Montessori 1989; Thomas 2017). Solicited by their self-directed explorations of tangible materials, as well as values, emotions, and hopes, children manifested the different ways in which they feel, perceive, and interpret their social surroundings. Over 900 photographs (from each geographical location) capturing children’s activity and their art, as well as field notes, were collected as data. These were organised into interconnected themes, drawing on children’s observations, responses to, and experiences of social patterns. The analysis merges two ‘voices’, children’s own narratives (visual and oral) and my analytical considerations, with images and text appearing in ‘conversation’ on the page. This aesthetic and textual intersection creates a dialogue between the practical elements of the study and the germination of sociological themes. I developed the study as a way of understanding the social discourses at play in perceiving, constructing, and revising children’s identities, when these are impacted by a diagnosis, in different geo-cultural contexts. Locating the methodology of this work at the intersection of sociology, ethnography, and socially engaged art (Helguera 2011), a purposeful conceptual and physical place was offered for children to reclaim their identities away from the performative gaze regulating self-expression in educational and medical interactions and spaces (Bernardi 2020). The value of this approach is illustrated in the outcomes of arts-based research with adult communities (Fels 2015; Huss 2016; Leavy 2015) and can be extended to research with disabled children. Thus, methods were infused with autonomy and an openness to multimodality, providing a visual, evocative, and practical catalyst to participate beyond questions and literal responses that constrict (research on) disabled lives, to raise the status of children’s membership in the research process and their right to freedom of expression. The examples demonstrate that children can engage in activities of sociological, ethical, and civic potential and worth when their right to freedom of expression is coherently upheld in relational spaces fostering material recognition. The sociological themes drawn from the exemplars are representative of the findings that arose from the study and the ways children’s agentic freedom facilitated a range of representations of their views.

Favourite People: Making Sense of Freedom, Trust, and Distinctions Many of the children involved drew images of their ‘favourite people’, linking them to personal stories in their talk and imaginative play. Introducing favourite people appeared to be the outcome of a growing sense of trust in the relationship developed in the creative space. Children made clear references to their surprise at being afforded freedom and (what appeared to be) a limitless supply of art materials, in the company of an adult ‘like you’ (Scott, 10, NW England). The combination of 175

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autonomy, environmental and relational conditions, reciprocated trust, and freedom to move, pause, adjust, and disrupt the canonical adult–child binary surrounded children’s art making and their reflections on people that have affective roles in their lives. Scott embraced participation and the art activities with enthusiasm: ‘Normally they don’t pick me, I don’t get picked’ and ‘I love art’. Similar to other children in the study, it became clear that a narrative of Scott’s family life had been constructed in teachers’ discourse through exchanges between adults and not in conversations with him. During the focus group sessions, teachers only mentioned his mother and sisters and tentatively assumed he had no contact with his father. Now in his final year of primary education, Scott spoke excitedly about his and his dad’s favourite band through a series of artworks depicting ACDC (Figure 10.1). I haven’t ever told other people I like ACDC, but my dad has the tapes. It’s his favourite. This is going to be a portrait of my favourite band, ACDC. This is Angus Young, lead guitarist. He’s pretty much the founder of the band, and he’s dressed like a schoolboy ever since he started the band. I’m going to do Brian Johnson. I wish we could do this more than four times. Here, I’ve done Angus Young swinging his jacket. (Scott)

Figure 10.1

‘Angus Young swinging his jacket.’ Charcoal and oil pastels.

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Through making art, children found ways to explore relationships, unpacking critical subjectivities while introducing people important to them and redressing existing assumptions. Angela (10, NW England) began her activity by drawing a girl on a large sheet of black sugar paper, using chalk. The process happened in silence. Angela adjusted her grip, turning the chalk stick to make fine lines, adding small details to the picture with care and focus. When the drawing appeared to be complete, Angela began collecting paints with great urgency, mixing colours to make new ones. This energetic moment seemed in contrast with the peaceful drawing actions that preceded it, culminating in a painting activity that was disruptive and powerful (Figure 10.2). It was during this ‘phase’ that Angela processed her familial identity and role, tapping into her observations and her understanding of behavioural norms and important (ableist) distinctions: My cousin Frida, between me and her, there’s this ‘difference’ [gestures speech marks]. Everyone thinks she’s a celebrity, ’cos she’s always quiet. She’s the family’s favourite. Are you writing it? [I nodded.] I’m like, what do I have to do to get her celebrity attention? There, that’s the colour I wanted to make! I’m going to draw Frida now. She’s going to be holding a notepad and pencil as everyone wants her autograph. My cousin, she just gets all the attention. (Angela)

Figure 10.2

‘My cousin Frida.’ Chalk and tempera.

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Like Angela, other children in the study were determined to channel some of the social tensions present in their lives, making our time together count. When Angela asked, ‘Are you writing it?’ she appeared to give value to her statement being documented and ‘fixed’ in my notebook. Her determination echoed in other creative encounters, where children’s sense of in/justice and the right to be (seen) became an inextricable component of their art-making actions. The affirmative possibilities and potential of ‘these kinds of actions are dependent on the time and place in which they occur’ (Helguera 2011, p. 65) and on critical attentiveness towards processes of mattering. A blending of recognition and hope in the art-making environment provided children with the space to expose power structures, through rebellious, (sometimes) humorous, and provocative representations. Children’s artworks and embodiment imbued in an aura of art as protest and protest as art.

Powerful Appeals for Recognition In their gestures, movement, talk, and material activity, all children, in both countries, demonstrated an understanding of adults’ responsibilities, particularly if invested in caring and education roles. Paolo (10, Central Italy) expressed his moral values in relation to a critical incident involving one of his after-school carers. Paolo was described by his teachers as very quiet, often ‘silent’, in contrast with his creative identity in the research activities, where he sang and shared his extensive knowledge of Formula 1; this identity also aligned more closely with his parents’ descriptions. During his last creative encounter, Paolo used salt dough. He quietly manipulated a ball of dough for over an hour, a laborious and, on this occasion, silent experiential activity (Figure 10.3). This appeared to be an embodied ‘warm up’, a ritual of preparation and a way of reworking boundaries in a shared and respectful silence which Paolo used to pitch his frustration and sadness at a recent change of carer. Paolo described the new carer as someone who ‘[is] not interested in their job with children’, situating himself as a ‘spokesperson’, a member of a community of children, by using ‘we’ and making this powerful plea for all adults to care: If you do not care about the things you do, why do you do them? We’re not asking you who knows what, but do it. Maybe it’s pointless. There will always be people like this. There will always be people who do not believe in anything, in which they never dream, there are so many things. Fra [Francesca], there are no good people on earth, holy people on earth, people who really love you. (Paolo) At the end of this complex monologue, Paolo paused for a while, then added, ‘Can you tell my dad, please? My mum doesn’t listen to me.’ 178

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Figure 10.3

Salt dough, monologue, and movement.

Dignity and Invisibility Paolo’s activity of moulding and stretching the salt dough provided a route to engage with and articulate values and feelings; importantly, it revealed both dignity and invisibility in his request for me to relay the critical testimony to his father. Like Paolo, other children in the study represented and embodied the effect of not being seen or heard by adults and peers. In cases where children used minimal verbal language, they appeared to maximise the potential of making experiences and views visible through their art, moving in proximity to me and assembling objects to initiate active, purposeful, and impactful communication. All the children in the study demonstrated pride in their actions and aesthetic outcomes, reworking familiar and cultural experiences to invite my attention, displaying their work, and engaging toys to partake in a shared moment of recognition (Figures 10.4 and 10.5). First, I paint me. Now I paint Mario. Do you know Mario? Take the photograph, please. Going to call the toys now. They can have a look. (Roberto, 5, Central Italy) Through art making, children were taking on a critical position and agentic strength, adapting visual expression and mattering, presenting observations of social 179

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Figure 10.4

‘Now I paint Mario.’ Toy and acrylic paint.

Figure 10.5

‘They’re looking.’ Composition and photograph by Luke.

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and relatable significance. In so doing, they developed a visual register and an esteem of their expertise that could be shared with me, their toys, and other symbolic companions.

Reimagining the Self Matt (5, NW England) was described by his teachers and teaching assistant in relation to ‘[having] very poor language’ and relational capabilities. In contrast to these limitations, Matt became engrossed in the art activities and narrated stories while adapting the space (the nursery room) and repurposing the available toys. He drew on his observations of family life and talk, disrupting the assumptions surrounding his identity (Figure 10.6). Look. Finishing touches. Tell Mummy. I’m so clever, make a rainbow, you look at it now and mummy later, then dinner, then bed. (Matt)

Figure 10.6

‘Finishing touches.’ Paper, acrylic paint, and movement.

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Children made their art in ways that evoked a shared appreciation of process and materials, with my role focused on being present and ‘a non-expert’, for children to (re)discover their own understandings and expressive literacies (Freire 2004).

The Social Purpose of Research and the Role of Researchers Critical arts-based research can disrupt the tendency to direct participants as a methodological practice (Finley 2014), inviting a type of social action that is less reliant on words and invested in recognition. Thus, freedom of expression as action/activism in research with disabled children can expose matters of social interest and their complexity, which the use of directive methods can forestall. Further, research designs that privilege language and words over experience and process, from recruitment to dissemination, can prolong discourses of exception, dependency, and need, shaping research participation and outcomes and ‘postponing’ the possibilities of conveying and understanding the humanity of disabled lives. From this perspective, the chapter has elicited both practical and ethical considerations for inviting and protecting children’s autonomy, choice, and multiple literacies in research by creating spaces and methods that are humble and non-prescriptive, encouraging children’s articulations that are born from personal, experiential, and reflexive representations (Bernardi 2020). Gramsci’s notion of ‘common sense’ provides a powerful conceptual framework to unpack seemingly fixed, structural, and discursive mechanisms that penetrate different social realities, including research. Thus, it is possible to recognise the different ways in which this ‘unconscious way of perceiving’ produces habits and imagined limitations (Hoare and Nowell Smith 1992, p. 322), binding relationships in and beyond research, permeating perceptions of what constitutes knowledge production and validity. These habits are founded on the assumption that research with disabled children is inherently problematic (Wickenden and Kembhavi-Tam 2014). If research is to function as a vessel for social change, then it is crucial to involve and empower children through participation that builds on emergent and unrestricted possibilities, takes a coherent approach to children’s rights and representation, and entails methodological plasticity, thus honouring spontaneous forms of dialogue and self-presentation that resist ableist and reductive narratives. Such a process is as much about recognising adult-centric limitations, habits, and biases as it is a route to embodying a culture that elicits openness to different ‘languages’, literacies, and imaginative mobility. As suggested by Gramsci, intellectuals engaging with the views of those on the margins have a responsibility to foster and amplify self-representation that rises from autonomy. ‘[T]his requires expanding the social base of the intellectuals and connecting their activities to a self-reflexive project of social and political transformation’ (O’Neill and Wayne 2018, p. 166). By troubling and reframing the privileged and agentic potential of the adult/artist/researcher/intellectual, it is possible to witness and convey children’s experiences, their knowledge, values, and priorities, in processes that are respectful, ethical, and not deterministic. Reimagining adult–child and dis/abled binaries can be the stimulus to examine the structures in and around 182

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research so that children can be active members in a generative process for social change. For too long, academics and educators have treated freedom of expression as a prospect that is separate from research and education and defended the use of directive methods as necessary (Gallacher and Gallagher 2008; Nind and Vinha 2012). In cases where these practices are challenged, a culture of collaboration and symmetry seems to seldom extend to research with disabled children (Corker and Davis 2002; Runswick-Cole et al. 2018; Wickenden 2019). The desire to conduct participatory research with children can become enmeshed in disciplinary and ableist assumptions, reproducing an imbalance in children’s experiences of agentic freedom. By recognising the purpose and value of Article 13 of the CRC, it is possible to explore the civic and moral potential of research and the need to address the methodological conditions that reproduce structural violence on autonomy and self-presentation, disable children’s experiences, and reduce participation to predictable, normalised, and homogenous forms of representation. Moreover, it is crucial to recognise the preventable pitfalls of methods that stem from authority, discipline, and direction and to redress the methodological ‘common sense’ that justifies their use, impacting children’s right to make ‘their views known’ (UN 1989, p. 5; Alderson 2012; UN 2008).

Conclusion Understanding the role researchers can play in protecting children’s rights, resisting the view that free exploration may be less ‘productive’ than directive interactions and methods, can lead to giving value to disabled children’s expressions of visibility and invisibility, collectiveness and oppression, respecting multimodality and autonomy and interrupting assumptions that identify disabled children as vulnerable, dependent on care, and socially inactive. The expectations of the CRC (1989) and the CRPD (2008) seldom extend to the ways researchers involve and represent disabled children, obstructing the possibility for the harmonisation of children’s rights and methodological planning. In the research discussed in this chapter, the creative encounters and the aesthetic and narratological outcomes re-centred children’s views, their capabilities and observations, and their role as active social agents. Reimagining children as experts and artists meant that their personal, complex, and subjective worlds could be respected and represented, prompting a critical redress of the absence of freedom of expression in research with disabled children. The purpose of the study was not to ‘heighten’ participation but to create and engage in a space of shared trust and creative freedom. Methods were conceptualised and achieved not as a set of instructions to ‘make art’ but to ignite dialogue—with the self and the other. If researchers are to involve and value (disabled) children’s views, directive methods are likely to be incompatible with a coherent honouring of children’s rights, their experiences, initiative, and creativity. Children, explicitly or tacitly, are expected to adhere to vocalised and canonical grammars, abstract and homogeneous representations, that are 183

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ramifications of ableist expectations. Here, I have argued that there is representational and civic potential in respecting and ‘receiving’ the visual, subjective, and unforeseeable; this way, exploring and experimenting can become akin to knowledge production, being attentive and present, so that children may be free and visible at once.

Freedom of Expression in Research CRC Focus: Article 13. (1) The child shall have the right to freedom of expression; this right shall include freedom to seek, receive and impart information and ideas of all kinds, regardless of frontiers, either orally, in writing or in print, in the form of art, or through any other media of the child’s choice. (UN 1989, p. 5) Research principles Examples from the literature Abbott, D. 2013. Who Says What, Where, Why Rights, recognition, and capability and How? Doing Real-World Research with A coherent approach to freedom of Disabled Children, Young People and Family expression is dependent on seeing, Members. In: T. Curran and K. Runswickrecognising, and respecting disabled Cole (eds), Disabled children’s childhood children as rights-holding capable social studies. Critical approaches in a global context. actors and involves critical opportunities Basingstoke: Palgrave Macmillan. pp. 39–56. to engage meaningfully with their views, Poretti, M. 2018. Unexpected Allies Expanding cultures, and expertise. the Theoretical Toolbox of the Children’s Rights Sociologist. In: C. Baraldi and T. Cockburn (eds), Theorising Childhood Citizenship, Rights and Participation. Basingstoke: Palgrave Macmillan. pp. 111–134. Sayers, D. 2018. Rights Not Needs: Changing the Legal Model for Special Educational Needs (SEN). In: K. Runswick-Cole, T. Curran and K. Liddiard (eds), The Palgrave Handbook of Disabled Children’s Childhood Studies. London: Palgrave Macmillan. pp. 617–642. Stoecklin, D. and Bonvin, J. (eds) 2014. Children’s Rights and the Capability Approach: Challenges and Prospects. Children’s Well-Being: Indicators and Research. Dordrecht: Springer. Cahnmann-Taylor, M. and Siegesmund, R. Arts-based methodologies and methods (eds) 2008. Arts-Based Research in Education: Agentic freedom, self-expression, and Foundations for Practice. Inquiry and Pedagogy the use of a variety of media, literacies, Across Diverse Contexts. New York: Routledge. and processes are essential in arts-based McNiff, S. 2013. Art as research: opportunities and research. Arts-based methodologies challenges. Bristol: Intellect. validate embodied, experiential, and self-discovery practices, which offer an important ethical and philosophical framework to reimagine rights-respecting research with disabled children.

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Note 1 The study was funded by the Department for Children, Education, and Communities, Edge Hill University (Lancashire, UK). The study and the methods used were approved by the university’s committee for research integrity and ethics.

References Alderson, P. 2012. Rights-respecting research: A commentary on ‘the right to be properly researched: Research with children in a messy, real world’. Children’s Geographies 10(32), pp. 233–239. Alderson, P. 2017. Utopian research with children. In P. Christensen and A. James (eds.), Research with children: Perspectives and practices. 3rd edition. London: Routledge. pp. 203–222. Alerby, E. and Bergmark, U. 2012. What can an image tell? Challenges and benefits of using visual art as a research method to voice lived experiences of students and teachers. Journal of Arts and Humanities 1(1), pp. 95–103. Berger, J. 2008. Ways of seeing. London: Penguin. Bernardi, F. 2019. Reclaiming childhood: Disrupting discourses of identity, autonomy and dis/ability, adopting arts-based methods, Gramsci and Bourdieu. A cross-cultural study in central Italy and north west England (PhD Thesis), Ormskirk: Edge Hill University. [online] [Accessed on 7 April 2022] Available from: https://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.795112 Bernardi, F. 2020. Autonomy, spontaneity and creativity in research with children. A study of experience and participation, in central Italy and North West England. International Journal of Social Research Methodology 23(1), pp. 55–74. Bernardi, F. 2021. Aesthetic literacies and research with disabled children, countering slow violence on creativity and autonomy. In Reimagining Childhood Studies. [online] [Accessed on 1 January 2022] Available from: https://reimaginingchildhoodstudies.com/ countering-slow-violence-on-creativity-and-autonomy/ Cascio, M. A., Weiss, J. A. and Racine, E. 2021. Making autism research inclusive by attending to intersectionality: A review of the research ethics literature. Review Journal of Autism and Developmental Disorders 8, pp. 22–36. Corker, M. and Davis, J. M. 2002. Portrait of Callum. The disabling of a childhood? In R. Edwards (ed.), Children, home and school: Regulation, autonomy or connection? London: Falmer, pp. 79–91. Corsaro, W. 2018. The sociology of childhood. 5th edition. Thousand Oaks, CA: Sage. Christensen, P. and James, A. eds. 2017. Research with children: Perspectives and practices. 3rd edition. London: Routledge. Curran, T. and Runswick-Cole, K. 2014. Disabled children’s childhood studies: a distinct approach? Disability & Society 29(10), pp. 1617–1630. Datta, R. 2018. Decolonizing both researcher and research and its effectiveness in indigenous research. Research Ethics 14(2), pp. 1–24. Davis, J., Watson, N. and Cunningham-Burley, S. 2017. Disabled children, ethnography and unspoken understandings. The collaborative construction of diverse identities. In P. Christensen and A. James (eds.), Research with children. Perspectives and practices. 3rd edition. London: Routledge, pp. 121–141. Fels, L. 2015. Woman overboard: Pedagogical moments of performative inquiry. In S. Walsh, B. Bickel and C. Leggo (eds.), Arts-based and contemplative practices in research and teaching. Abingdon: Routledge. pp. 112–123. Ferri, B. A. and Connor, D. J. 2014. Talking (and not talking) about race, social class and dis/ ability: working margin to margin. Race Ethnicity and Education, pp. 1–23. Finley, S. 2014. An introduction to critical arts-based research: Demonstrating methodologies and practices of a radical ethical aesthetic. Cultural Studies Critical Methodologies 14(6). pp. 531–532.

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Francesca Bernardi Freire, P. 2004. Pedagogy of hope. New York: Continuum Books. Gallacher, L. and Gallagher, M. 2008. Methodological immaturity in childhood research? Thinking through participatory methods. Childhood 15(4), pp. 499–516. Goodley, D. 2014. Dis/ability studies. Theorising disablism and ableism. Abingdon: Routledge. Goodley, D. and Runswick-Cole, K. 2016. Becoming dishuman: Thinking about the human through disability. Discourse: Studies in the Cultural Politics of Education 37(1), pp. 1–15. Gramsci, A. 1992. Selections from the Prison notebooks. Trans. Q. Hoare and G. Nowell Smith. London: Lawrence and Wishart. Gramsci, A. 2011/1926. Prison notebooks. Volume 1. Trans. J. A. Buttigieg and A. Callari. New York: Columbia University Press. Helguera, P. 2011. Education for socially engaged art. A materials and techniques handbook. New York: Jorge Pinto Books. Hendrick, H. 2008. The child as a social actor in historical sources. In P. Christensen and A. James (eds.), Research with children. Perspectives and practices. 2nd edition. London: Routledge, pp. 40–65. Hoare, Q. and Nowell Smith, G. 1992. The study of philosophy. Introduction. In A. Gramsci (eds.), Selections from the Prison notebooks. Trans. Q. Hoare and G. Nowell Smith. London: Lawrence and Wishart, pp. 321–322. Huss, E. 2016. Toward a social critical, analytical prism in art therapy: The example of marginalized Bedouin women’s images. The Arts in Psychotherapy 50, pp. 84–90. Leavy, P. 2015. Method meets art: Arts-based research practice. 2nd edition. London: Guilford Publications. Loyd, D. 2013. Obtaining consent from young people with autism to participate in research. British Journal of Learning Disabilities 41(2), pp. 133–140 Luft, R. E. 2009. Intersectionality and the risk of flattening difference gender and race logics, and the strategic use of antiracist singularity. In M. T. Berger and K. Guidroz (eds.), The intersectional approach: Transforming the academy through race, class, and gender. Chapel Hill, NC: University of North Carolina Press, pp. 110–117. Martin, K. and Franklin, A. 2010. Disabled children and participation in the UK. Reality or rhetoric? In B. Percy-Smith and N. Thomas (eds.), A handbook of children and young people’s participation perspectives from theory and practice. London: Routledge. pp. 97–104. McGuire, A. 2016. Life without autism. A cultural logic of violence. In K. Runswick-Cole, R. Mallett and S. Timimi (eds.), Re-Thinking Autism. Diagnosis, Identity and Equality. London: Jessica Kingsley Publishers. pp. 93–109. Metcalfe, A. 2016. Educational research and the sight of inquiry: Visual methodologies before visual methods. Research in Education 96(1), pp. 78–86. Montessori, M. 1989. Educating the human potential. Oxford: Clio. Nicolaidis, C., Raymaker, D., McDonald, K., Dern, S., Ashkenazy, E. and Boisclair, C. 2011. Collaboration strategies in non-traditional community-based participatory research partnerships: lessons from: an academic-community partnership with autistic self-advocates. Progress in Community Health Partnerships 5(2), pp. 143–150. Nind, M. and Vinha, H. 2012. Doing research inclusively, doing research well? Report of the study: Quality and capacity in inclusive research with people with learning disabilities. Southampton: University of Southampton. [online] [Accessed on 30 December 2021] Available from: https:// eprints.soton.ac.uk/344228/ O’Neill, D. and Wayne, M. 2018. Considering class, theory, culture and the media in the 21st Century. Boston: Leiden. Penketh, C. 2017. ‘Children see before they speak’: An exploration of ableism in art education. Disability & Society 32(1), pp. 110–127. Pink, S. 2012. Advances in visual methodology. Thousand Oaks, CA: Sage. Pluquailec, J. 2018. Thinking and doing consent and advocacy in disabled children’s childhood studies research. In K. Runswick-Cole, T. Curran and K. Liddiard (eds.), The Palgrave handbook of disabled children’s childhood studies. London: Palgrave Macmillan, pp. 213–228.

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Children’s Rights, Arts-Based Methods, Gramsci’s Common Sense Purcell-Gates, L. and Fisher, E. 2017. Puppetry as reinforcement or rupture of cultural perceptions of the disabled body. Research in Drama Education: The Journal of Applied Theatre and Performance 22(3), pp. 363–372. Raffety, E. L. 2015. Minimizing social distance: Participatory research with children. Childhood 22(3), pp. 409–422. Randall, D. 2012. Revisiting Mandell’s ‘least adult’ role and engaging with children’s voices in research. Nurse Researcher 19(3), pp. 39–43. Rose, G. 2016. Visual methodologies. An introduction to researching with visual materials. 4th edition. London: Sage. Runswick-Cole, K., Curran, T. and Liddiard, K. 2018. Introduction. In K. Runswick-Cole, T. Curran and K. Liddiard (eds.), The Palgrave handbook of disabled children’s childhood studies. London: Palgrave Macmillan, pp. xxi–xxiv. Saito, S. 2015. Ainu: “Homogeneous” Japan’s indigenous people. In J. Brown and N. F. Johnson (eds.), Children’s images of identity. Drawing the self and the other. Rotterdam: Sense Publishers, pp. 131–147. Scott-Barrett, J., Cebula, K. and Florian, L. 2019. Listening to young people with autism: learning from researcher experiences. International Journal of Research & Method in Education 42(2). pp. 163–184. Smith, R. 2015. Educational research: The importance of the humanities. Educational Theory 65(6), pp. 739–754. Terzi, L. 2014. Reframing inclusive education: educational equality as capability equality. Cambridge Journal of Education 44(4), pp. 479–493. Thomas, N. 2017. Turning the tables: Children as researchers. In P. Christensen and A. James (eds.), Research with children. Perspectives and practices. 3rd edition. Abingdon: Routledge, pp. 160–179. Thomas, N. and Stoecklin, D. 2018. Recognition and capability: A new way To understand how children can achieve their rights? In C. Baraldi and T. Cockburn (eds.), Theorising childhood citizenship, rights and participation. Basingstoke: Palgrave Macmillan, pp. 73–94. Thompson, S., Cannon, M. and Wickenden, M. 2020. Exploring critical issues in the ethical involvement of children with disabilities in evidence generation and use. Working Paper. Florence: Office of Research, Innocenti. UNICEF. Tisdall, K. 2012. The challenge and challenging of childhood studies? Learning from: disability studies and research with disabled children. Children & Society 26, pp. 181–191. UN. 1989. United Nations convention on the rights of the child. Geneva: United Nations. UN. 2008. Convention on the rights of persons with disabilities and optional protocol. Geneva: United Nations. UN. 2015/1948. The universal declaration of human rights. Geneva: United Nations General Assembly. Wickenden M. 2019. ‘Disabled’ versus ‘nondisabled’: Another redundant binary? In A. TwumDanso Imoh, M. Bourdillon and S. Meichsner (eds.), Global childhoods beyond the north-south divide. Palgrave studies on children and development. Cham: Palgrave Macmillan. pp. 123–144. Wickenden, M. and Kembhavi-Tam, G. 2014. Ask us too! Doing participatory research with disabled children in the global south. Childhood 21(3), pp. 400–417. Young-Bruehl, E. 2012. Childism: Confronting prejudice against children. London: Yale University Press.

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11 BEYOND THE SPOKEN WORD—FACILITATING THE DISABLED CHILD’S VOICE THROUGH THE MOSAIC APPROACH Elvira Psaila Children, including disabled children, are increasingly being recognised as knowledgeable beings and important social actors in their everyday lives (Mason and Hood 2011) with equal fundamental rights to a good quality of life (Convention on the Rights of Persons with Disabilities and Optional Protocol 2006). This is also recognised in Article 12 of the United Nations Convention on the Rights of the Child (1989) (CRC), where it is specifically stated that children have ‘the right to express those views freely in all matters affecting the child, the views of the child being given due weight’, hence implying that this active, child-led role needs to extend beyond the personal and private spaces of the child’s life and be reflected both in research and in the design of policies on national levels. Despite the recognition placed on the importance of child voice and agency in both the UNCRC (1989) and the UNCRPD (2006), literature suggests that there is still a void in the presentation and acknowledgement of the disabled child’s voice (Stafford 2017, Curran and Runswick-Cole 2013). My practice as a paediatric physiotherapist working with disabled children on a daily basis reinforces this concept of absence of the disabled child’s voice. This is not only reflected through my observations, where it appears that child agency is rarely translated into the everyday practices of professionals and parents, but also a sense that the voice of the disabled child is often also forgotten in the wider scope of childhood itself. This is embodied in the lack of consultative processes that situate disabled children in a leading role, both on a national level, in the design of accessible spaces and practices involving children, and more worryingly on personal levels, such as consultation and feedback in personal settings, including the home and the classroom. This chapter explores a tangible way for disabled children and researchers to work together in directing research in a manner that recognises the voice of the disabled 188

DOI: 10.4324/9781003056737-15

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child as meaningful, valuable, and knowledgeable: the Mosaic approach (Clark and Moss 2011). The writing of this work is based on my experience as a researcher working with the Mosaic approach, whilst also interlaced with vignettes arising from my experience as a healthcare professional and as a mother. I then conclude by presenting practical ways in which the Mosaic approach can be applied in everyday practices outside of defined research studies. Prior to this, however, it is important to understand the position the disabled child and their voice hold within society.

The Disabled Child In older portrayals, children have been expected to be innocent and passive beings (Priestley 2003) that require nurturing and guidance in order to grow into successful, independent adults (Clark and Moss 2011). Academia has challenged this traditional view by taking the sociology of childhood a step further (Kay and Tisdall 2012). Childhood studies today acknowledge that children are not only influenced by the societal contexts in which they are situated but also create their own cultures (Corsaro 2005). It can be argued that non-disabled children create their self-identity and an own personal role in the spaces they inhabit in their everyday lives through play and through interaction with peers and adults that allow for self-determination and the recognition of their voice as valid (Barron et al. 2020). But is this the same for disabled children? Immediately, on the identification of the presence of an impairment, the number of adults involved in the child’s life increases exponentially, and the disabled child is placed under a professional, medical gaze (Bult et al. 2011). The child seems to become an object of curiosity—a body that seems to belong to the professionals involved rather than to the child as a person (Curran and Runswick-Cole 2014, Bult et al. 2011, Sullivan 2005). The spaces the child is allowed to inhabit are thus determined by the adults—parents and professionals. The medical professionals may deem it important that the disabled child attend weekly therapy sessions and/or require multiple surgeries; educational and communication professionals that try to define the disabled child’s ability to learn, understand, and express themselves and determine what education system they feel is more adequate to the child’s needs (Sylvester et al. 2014). Furthermore, the opportunities for free play and interaction with peers without adult surveillance, among other attitudinal barriers, are significantly diminished (Cini 2017). As mentioned earlier, opportunities to play form part of the foundation for the development of self-advocacy and self-determination (Barron et al. 2020). For the disabled child, this is not only limited by the added intrusion of adult presence but also through the lack of physical environments to access such opportunities of play. Hence, the lack of accessible playgrounds and adapted sports and leisure activities and the higher need for actual or presumed adult supervision are factors that limit the opportunities for disabled children to enjoy the full experience of childhood and create opportunities of having an autonomous voice (De Schauwer et al. 2008). Thus, for the disabled child, the right to voice is often lost amidst the many professional, adult voices that determine the boundaries in which the child can function. 189

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Furthermore, research exploring young disabled childhoods still tends to focus on the professional’s experience or on retrospective insights of disabled adults (Disability Rights Commission 2006; Watson 2012). It seems that, although researchers are utilising participatory techniques and acknowledging non-disabled children as capable of being co-directors in various stages of research projects, working with disabled children on a similar basis is still seen as a daunting task. This is particularly true for younger disabled children and children who have speech, language, and communication needs.

Voice Voice is a privilege and a right that many of us take for granted (Psaila 2017). As professionals, we must appreciate that our voice holds power, authority even. Thus, although we may listen to clients, professionals should keep in mind that whether we acknowledge it or not, we still hold an important and decisive perspective in ensuring that their needs are addressed appropriately. As parents, although we give opportunities for our children to make certain decisions, we are still in the position of determining what choices children can really make freely. Furthermore, if one has an academic background, the power of one’s voice continues to increase, not only because in today’s society academic achievement is given value, but also because one tends to be more articulate and eloquent when presenting their thoughts and/or arguments. The latter point, I believe, brings to light the notion that voice is still strongly correlated to the spoken or written word. Children may not have this eloquence and mastery of speech. Disabled children may not be able to speak verbally at all. But working with disabled children daily has shown me that, as Mercieca (2013) argues, even a facial expression, a simple look, can speak a thousand words and challenge our adult perceptions of the disabled child’s abilities and levels of agency. So how does one define voice? For me, voice signifies the opportunity to communicate, to recount, or to convey a message on present, past, or future lived experience. Having voice is the ability to show others what is important to oneself and to have others value and acknowledge what is being conveyed. One’s voice can tell a story, a narrative, or can challenge others’ expectations; it can bring about opportunities for change. Each person’s voice is unique and will present an individual perspective on personal and common societal events—it is a reflection of one’s position in the spaces they inhabit (McLaughlin and Coleman-Fountain 2018). Having a voice is key to autonomy. However, the power of one’s voice is intrinsically linked to the meaningful translation and understanding of the message by those listening. What must also be taken into consideration is that this translation and understanding is highly dependent on one’s position in society. This notion was explored in the thinking and writings of Jacques Rancière, who argues that all humans are born with innate, equal knowledge (Rancière 1983). What varies is that our position in society and the tools available to each individual determine the power attributed to that voice and to whether the message is acknowledged 190

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in its entire validity or is heard simply as noise (Rancière 1991). This innate knowledge and validity of voice does not relate solely to academic knowledge but rather to knowledge of the self—of being able to perceive areas of importance in the spaces one inhabits and having a sense of knowing what one wants for oneself. If Ranciere’s theory is applied to the lived experience of the disabled child, what position does the child’s voice hold? If the power of one’s voice is also linked to one’s position in society and the tools available to project this voice, then the disabled child’s voice is at a significant disadvantage. Child voice is often deemed as quasi-superficial and naïve within traditional views associated with childhood. Furthermore, the powerful voice of the number of adult professionals involved in the disabled child’s life continues to drown the ability to actively listen and value the innate knowledge and voice of the child themselves. Thus, how can the expression of voice be facilitated and given the value it deserves particularly when the voice belongs to a young disabled child? The disabled child embodies and is situated in the complexities of both being a child and of being a disabled person. As discussed, besides the perception of protection and care required in childhood, the number of professional adults compounding to this in a disabled child’s life increases exponentially. Moreover, there is the possibility that the child has not yet or will not be able to master the art of spoken and written language in a manner that is easily understood and valued by all. As an academic and professional working with the disabled child, one must recognise that the voice of the disabled child must therefore project beyond these barriers in order to be heard and valued.

The Mosaic Approach—Facilitating the Right to Voice Non-verbal techniques have been shown to be powerful media in allowing the voice of children to be recognised (Clark and Moss 2005) both in everyday life and in research settings. Such tools include play, drawings, photographs, role-plays, and map-making. Clark and Moss (2005) combined these participatory techniques with the more traditional research approaches, such as that of interviewing key adults, to create the Mosaic approach. While the Mosaic approach was designed to be utilised with young non-disabled children in a research study that explored the space they inhabited within a nursery school, in my studies I have used this approach successfully with disabled children in the different environments of their lives—including home, school, and clinical settings (Psaila 2015). This methodology not only places the child’s voice at the forefront, irrespective of the child’s ability to express themselves verbally, but also adequately recognises the child’s right to guide the content of the study themselves. This is in keeping with the view that children are a distinct social group, that they have a right to be given the space and the tools necessary to express their views (CRC 1989), and that they are not passive beings or the property of their parents and guardians (Clark and Moss 2011). The right to have one’s voice heard and valued is enacted through the integrated methodological approach employed in the Mosaic approach. Here, the visual and the verbal, that is, the entirety of the experience of childhood which is not limited 191

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by one’s verbal or linguistic abilities, come together to form a ‘living picture’ of children’s lives (Clark and Moss 2005). This necessitates the researcher to view children, no matter how young, as • experts in their own lives; • skillful communicators; • rights-holders; and • meaning-makers. (Clark and Moss 2005 p5) Acknowledging disabled children as experts and beings with rights at par with the adults in their lives requires that researchers and professionals not only provide a diverse array of tools to facilitate voice but also listen to disabled children actively (Clark and Moss 2011 p. 4). Furthermore, if this knowledge is utilised to bring about positive change in environments and practices currently in place, researchers are obliged to translate the knowledge generated by disabled children into formats that are taken seriously by those in power whilst remaining true to the voice of the disabled child. But before delving deeper into these issues, a better understanding of the different components that make up the Mosaic approach is required. Throughout the upcoming sections, I will be referring to my own personal experience of using the Mosaic approach with young disabled children and draw on real episodes of this approach in practice. It’s also important to note that all names used are pseudonyms, so as to retain the child’s anonymity.

Stage 1—Knowledge Generation/Data Collection Phase The first stage of the Mosaic approach includes the use of a variety of tools to generate a vast range of knowledge in the various settings of the child’s life in order to address the research question and the area of study being explored. Clark and Moss (2005) suggest the following list of tools to be used during the first stage of research projects utilising their approach. These include: • Observation; • Child-conferencing; • Cameras (photographs); • Tours; • Map-making; • Drawings; • Role-plays; • Interviews with the key adults involved. (Clark and Moss 2011, pp. 15–37) The choice or number of tools used, from personal experience, is highly dependent on the child. At times, children I have worked with refused to utilise any one of the 192

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aforementioned tools or, more interestingly, only used a particular tool in a specific setting. For example, Alexander, a 7-year-old boy having spina bifida, enthusiastically gave me a tour of his school but emphatically refused to give me a tour of his home. Furthermore, some children I have worked with brought in different tools not mentioned in the previous list as a means of adding input to the research study. Nathan, a boy on the autism spectrum who communicates using single words, in our first session together progressed from role-plays using dinosaurs to bringing in a book about flags instead. With the book in hand, Nathan proceeded to name all the represented countries. One-third along the way, he insisted that I repeat after him, and in the final third, I was expected to name the countries myself alone. In this way, irrespective of his verbal abilities, he took control of the session and actively acknowledged and asserted his ability to direct me in what could and could not be done in our research sessions together. What these tools enable is the generation of knowledge that goes beyond the spoken word. Each tool takes into account details that the spoken word may have left unsaid—the choice or absence of colours used, the position of various persons or items in drawings or role-plays, the tone of voice used, and the prominence given to certain themes pertaining to their everyday lives. The use of these various techniques also allows for child silence. The ability to refuse a particular tool, to draw a specific subject, or to take the researcher into particular spaces of daily life all hold significant meaning in upholding the disabled child’s right to be respected as an individual being. Referring back to my work with Alexander (Psaila 2015), as already mentioned earlier, he refused to give me a tour of his house. He also refused to draw his actual home and insisted on drawing his dream house instead. This consisted of a massive house with large windows and an elevator on either side of each window—a stark contrast from his actual house, a small first-floor apartment not served by a lift and with narrow doors that limited his access to all the rooms when he was using his wheelchair. Through his silence about his actual home, Alexander made a statement on the importance of having an accessible home by only featuring his dream house in our work together, a house that was centred on wheelchair accessibility. Furthermore, these non-verbal tools also served to demonstrate how, despite his physical impairment, Alexander still identified himself as equal to his peers. When drawing himself and his friends, Alexander simply drew a page of identical stick figures and asked me to write a name on each figure. It is important to note that the drawing was done in this way by choice, not because of lack of ability to draw, as when drawing himself and his family, all the family members were drawn with distinctive features, such as glasses, caps, and different attire, to ensure each person was identifiable. Another important tool in the first stage of the Mosaic approach is the interviews with the key adults in the child’s life. These may range from parents to education professionals and clinicians. It is important to note that the interviews do not serve to devalue or diminish the child’s leading role in the study, but rather to present another piece of the mosaic making up the child’s life. From personal experience using the Mosaic approach, the themes the adults feel are most important to the disabled child at times significantly contrast and vary from what the disabled child actually feels as 193

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important in their life. However, given the position of authority adults hold, it is often these issues which are targeted when formulating plans in the disabled child’s life, rather than the child’s own priorities. Throughout the knowledge-generation phase, it was evident the children I worked with were extremely keen in making their voice heard, through the use of both direct and indirect channels. Given the right tools, I believe the use of the Mosaic approach helps show how keen and competent children, even of a young age and irrespective of their verbal skills, are in expressing who they are and what is important to them. As mentioned, the findings of my studies also suggest that the spoken word is not the only tool which is effective in making children’s voice heard (Clark and Moss 2011). Photographs, drawings, and role-plays have also been a powerful tool in bringing out disabled children’s voice during research projects. This ability continues to reinforce the right disabled children have in being active agents in their own lives, as well as having their voice heard with the respect and dignity offered to the highest members of society. In order for this right to be fully respected, the adults involved must be ready to listen and acknowledge that it is only through listening that the voice of the disabled child can be fully heard, understood, and valued. Allowing children to make their voice heard is useless, unless we, the adults, learn to listen to what is being voiced and move away from a view that focuses on the impairment rather than disabled children’s potential (Salamanca Statement 1994). It must also be taken into consideration that there is a risk that the authenticity of voice may be interpreted as sentimental or anecdotal by various stakeholders in the child’s life (McColl and Adair 2013). All this knowledge is put together by the researcher in the next stage of the Mosaic approach, by constructing a living picture—a mosaic—of the child’s life.

Stage 2—Piecing Together the Gathered Data In the second stage of the Mosaic approach, all the knowledge generated in the first stage is placed together by the researcher to give a more holistic image of the child’s lived experience (Clark and Moss 2005). This can be done through the construction of tables and diagrams, as per Figures 11.1 and 11.2 in the following (Psaila 2015). The emerging themes can then be utilised to identify the areas in the child’s life that need to be reinforced, challenged, and/or changed. This stage of the Mosaic approach is thus based on the researcher’s input on collating and interpreting the knowledge generated. Given the diverse nature of the tools used in the first stage, the researcher must interpret not only spoken or written words, that is, clear expressions or answers to given questions, but, rather, also through observation, reflection, and active listening, bringing to light themes that may escape a passive onlooker. This can only be achieved if the adult researcher strips themselves from the position of power they are placed in. Thus, when using the Mosaic approach, the researcher must approach the process, from the very beginning, in a perspective that places the disabled child as the expert—the one holding the most powerful position in the study. Although the adult researcher still has a role 194

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Figure 11.1

Themes emerging from role-plays.

Figure 11.2

Themes emerging from observation sessions.

in guiding the child and presenting them with tools and opportunities for self-expression, they must also acknowledge the fact that they themselves (the researchers) are simply mediums and vessels for collecting information brought forward by the child. Given the child’s age and verbal (or lack of) skills, the adult researcher has the added responsibility of being able to capture all that is unsaid, or that is expressed nonverbally through facial expressions, tone of voice, avoidance, or repeated mentions, among others. During the second stage of the Mosaic approach, all these non-verbal cues, gestures and behaviours, must be included. From personal experience using this methodology, what is expressed through silence, behaviour, and other non-verbals often shapes and encompasses the very essence of what the disabled child wants the research project to bring out. 195

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Thus, the accuracy and truth of the themes emerging at this stage of the research process is based on the researcher’s ability to listen actively and holistically. The framework of the Mosaic approach places great emphasis on the importance of listening as a prerequisite in allowing for the generation of new knowledge (Clark and Moss 2011). Listening must be understood as an active process combining hearing with interpretation and construction of meaning that is a necessity in everyday life (Clark and Moss 2011). Clark and Moss (2011) suggest a number of conditions that should be present in order to enhance listening. First and foremost, a climate that promotes listening must be created—a climate that values children’s opinions. Secondly, listening cannot be a rushed activity, and therefore, the child and researcher must be allowed to take their time in listening and interpreting (Clark and Moss 2005). Hence, from the start, I ensured that each participating child felt comfortable in sharing their experiences with me and in knowing that they had ownership and control over the project and could decide on what to divulge with me and could refuse to continue sharing at any stage in which they did not feel comfortable. I also did not set any given time frame for the duration of the sessions, and it was the child who decided when time was up for our work together. In other words, a trusting space where the children are made to feel in control must be created—an environment where the researcher’s own thoughts and expectations must be shelved for as long as required so as to ensure that it is the children themselves that are challenging the daily spaces they inhabit. It was this mindset and the creation of a safe environment that allowed for the child’s voice to be heard with the necessary respect that the knowledge generation sessions should start. This mindset should be maintained throughout the entire process, including the analysis.

Stage 3—Identifying Areas for Continuity, Challenges, and Change The final stage of the Mosaic approach encompasses one of the fundamental principles of emancipatory research (Bartoli 2017). The findings are to be applied to create continuity, to challenge, and to create opportunities for change (Clark and Moss 2005). During this stage, the researcher has the responsibility of identifying the issues pertaining to the disabled child’s priorities. This ensures that the disabled child’s right to be actively involved in the direction of their life is fully respected. In my studies, I have achieved this by using the principles of the social model of disability, coupled with the thinking of Jacques Rancière referred to earlier, in the analysis of the mosaics created. The social model of disability, whilst it does not deny the effects of the impairment itself, shifts the focus of the arising challenges to the disabling barriers within society (Georing 2010), as perceived and experienced by the disabled child themselves. What the researcher must also acknowledge is that, at times, these barriers are being created through the good intentions of the adults involved in the disabled child’s daily environments. This may range from having parents that are focused on ‘fixing’ the impairment through various therapeutic regimes, professionals that all have a personal agenda for the child, or widespread stereotypical views that devalue 196

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the voice of children. The role of the researcher, thus, is to present the disabled child’s perspective in a manner that will challenge the adults’ viewpoint. One that may highlight the impact these perceptions and practices are having on the child and also present an alternative perspective. A perspective that acknowledges the disabled child, irrespective of age and of the nature of the impairment, as having sufficient innate knowledge to identify the barriers they feel are hindering their full potential or, moreover, are breaching their fundamental human rights. A clear example of this difference in perspectives and central issues in one’s life emerged in my work with Alexander. The adult professionals felt that the most important focus for the boy should be physiotherapy intervention to encourage walking, and that a significant barrier to the child’s quality of life was the lack of access to frequent physiotherapy sessions. For Alexander, contrastingly, the main barrier he felt was important to get across was the lack of wheelchair-accessible environments—shops that do not have enough room for a wheelchair to be manoeuvred with ease inside and allow a comfortable shopping experience, buildings that are not served by an elevator, and the fact that his classmates were not allowed to make use of the school lift with him. Here, one can observe a stark contrast in how the same issue—the use of a wheelchair and, hence, the inability to walk—is viewed. The adults still perceive fixing the impairment as the solution to a more independent life; the boy, on the other hand, views this as an issue which must be addressed by changing the outside environment rather than himself. In my work with Alexander, during our one-to-one sessions, the passion with which he addressed the theme of physical accessibility, the recurrence of this theme in the entire variety of tools used, clearly emanated the fact that this 7-year-old boy already possessed the knowledge required to identify the fact that his basic human rights were being breached through the widespread lack of accessible environments.

Applying the Mosaic Approach in Everyday Practice The previous sections have addressed the application of the Mosaic approach within the scope of research. But how does one use such a research technique in practices outside the scope of research? Can these tools be applied to the fast-paced nature everyday life has embraced? And how can one ensure that such practices are being put in place for the benefit of disabled children and not as fancy, tokenistic practices? In other words, how can the Mosaic approach be used in a tangible and practical way so as to facilitate the implementation and practice of the premises set in the CRC (1989) in everyday life? The following sections aim to propose tangible and feasible ways of implementing the stages of this method in everyday life.

Home It is easy to assume that the home is the place where the disabled child will feel most at ease in exerting their right of having their voice heard. Reality, I believe, is somewhat different. As a mother myself, I appreciate how easy it is to get lost in the mad 197

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rush that everyday life can be—taking the children to school, to therapies, to extracurricular activities; doing my own work; keeping up the house; and a vast array of all sorts of errands and necessities. Thus, very often, having a meaningful conversation with our children is often forgotten, as it does not come with a deadline or a specified time frame in which it needs to be completed. ‘Have you had a good day at school?’ is often asked automatically every afternoon when the children are back home, but are we even looking at the children when asking? And often, the standard ‘Mmm’ is the expected and accepted reply we often get in return. In order to establish a home environment that encourages and values child voice, a shift in the aforementioned everyday behaviours must occur. The Mosaic approach can offer the resources for this to happen and to establish a relationship that goes beyond a relationship of parent and child, to a relationship where both are allies. As professionals, we must therefore help families foster an environment that promotes listening. The Mosaic approach emphasises the need for time. Time to sit and listen, without judging, to what is happening in the children’s lives. ‘Are you happy?’ ‘What makes you angry or sad?’ are all valid questions which, if we reflect, we realise are not asked as frequently to children as one would expect at home. The given social norm, that it is parents who know what is best for their children, is so ingrained in our upbringing that we do not realise that at times it can be the parents themselves who are causing anguish to children. Thus, as professionals, we should encourage families to prioritise finding the time to create a space where the child feels safe in expressing themselves freely. During this time, conversation can be aided by different media: ● Drawing. ‘Let’s draw something together. What do you think we should draw?’ ● Role-plays. ‘Today you’ll be the mummy and I’ll be your daughter. What are we doing this morning?’ ● Photos. ‘Here’s a camera. Shall you take some photos of the things you like or don’t like around the house?’ ● General play. ‘What shall we play today? You can make the rules, and I’ll follow.’ These points may seem superficial, and the child may indeed decide to draw something of little or no relevance to their daily experience, but from my work, I believe that they can serve as the first steps in creating an environment where the child’s trust in you, as an adult and as a person, grows. Children who are non-verbal and/or have very complex needs may not be able to partake in the same manner. However, observation of non-verbal expressions, vocalisations, and behaviour is still possible, as shown in other chapters in this handbook. This ability to express oneself and exert agency despite severe impairments was often demonstrated by children having profound intellectual and multiple disabilities (PIMD) I worked with as a physiotherapist. This agency ranged from falling asleep during therapy sessions to ensuring that our time together is cut short to expressions of sheer, horrified shock upon hearing my voice in environments outside of the clinic, for

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fear of an impromptu therapeutic session. These incidents highlight the ability of disabled children, irrelevant of age and/or ability, to recognise and choose what goes on and to exert self-advocacy and self-determination in their daily lives. The key is to be able to view all children as human beings with their own self-realisation and sufficient knowledge and awareness on their self as a person. By creating situations where the child actively realises that their parents/guardians are willingly acknowledging and valuing their input in activities together, it can become easier for children to be honest and assertive in more complex issues in their lives. Once these activities are done, then the Mosaic approach necessitates that they be placed together to create a mosaic. Here, professionals need to guide parents to forget that they are the parents and look at what has been said, created, or enacted and extrapolate and link meanings. This might not be achieved after the first time such activities are done, which is why guidance from professionals is important. It takes time. Through observation, repetition, and patience, patterns tend to emerge. One must question these patterns—are certain behaviours expressed after specific tasks or interventions? Are Tuesdays always the worst day? If so, what happens regularly on a Tuesday? Once these patterns have emerged, parents and professionals must move on to creating opportunities for change, challenging what has also been done, and promoting situations and roles the child feels happy and confident in. This may be the hardest part. It may come to light that what is anguishing our child the most are our good intentions. The frequent therapies to minimise the effect of the impairment and for our child to be as physically independent as possible, our own aspirations for the child we always dreamed of having, or of what we thought would make a perfect and happy childhood. Kinglsey (1987) suggests that parents need to be careful that they do not get lost in what could have been but rather acknowledge and appreciate the equally interesting journey that has been presented. As professionals, we can help guide towards this positive outlook rather than focus on the limitations the impairment could have possibly brought about. This is highly relevant to the application of the Mosaic approach in daily life. If we are to analyse the knowledge our children share with us, in order to ensure that their voice is heard appropriately, then our own expectations as parents and professionals must be shelved, and we need to be ready to be both appreciated and/or criticised on what we believe is best for our children, by our children themselves.

School School is a place for development—it is the space children inhabit for most part of their young lives. Furthermore, given the increased situations where both parents are engaged in full-time employment, children, including disabled children, are spending longer hours at school. This places education professionals in a privileged position as having the most time in the presence of children. With this comes the added responsibility of ensuring disabled children are given a voice that is valued

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within the school environment. This facilitation of voice and the space for children to grow into thinking beings, which one would assume is the main aim of school, is, however, often overshadowed with the academically demanding curriculum educators must complete within an academic year. This academic demand, coupled with the traditional view that places the education professionals in an assumed powerful position privileged with more knowledge than the students in class, continues to restrain the boundaries in which children can exert their right of being heard. As stated earlier, disabled children are further disadvantaged with the constant presence of their learning support educator (LSE) and the amount of time spent outside of the mainstream classroom so as to attend therapies or specialised programmes. Even if they are within the mainstream class for the entirety of the school day, I have observed disabled children being placed on separate desks, facing the wall, with their backs to the teacher and the classroom peers. How can one’s right to be acknowledged as equal to their peers be enacted if their physical presence is not even recognised within the classroom? It is here that the LSE should aim to find tools and resources that not only address the individual needs of the assigned student but can also be incorporated into the main lesson plan of the entire class. When working with disabled children, the tools used in the knowledge-generation phase (stage 1) can be employed to help in the design and content of the student’s individualised education programme (IEP). Particularly when considering that although contact books may be used regularly, the IEP meeting may be the only space where the parents, education professionals, and possibly, health professionals are sitting together in the same room (or online) simultaneously to discuss the well-being, progress, challenges, and strengths of the disabled child. So how can the Mosaic approach be applied in view of such obvious barriers to the facilitation of child voice? The increased application of the use of the emergent curriculum within local classrooms, particularly in primary years, can aid the application of this approach. In my preparation for the writing of this chapter, I discussed the Mosaic approach with a number of educators working in the early years of schooling. In these conversations, drawings and role-plays repeatedly came up as tools which are already regularly used in the classroom. What is perhaps lacking is further reflection, insight, and follow-up on what the children are telling us. Thus, although the use of tools may already be familiar within the classroom, the second and third stages of the Mosaic approach—where the knowledge is pieced together to create a living picture as well create change—are still new to the education system. Here I believe that it is important to highlight two further points that make the Mosaic approach such a valid methodology within this institution. First of all, it is important for the students themselves to be encouraged to reflect on and discuss the meaning behind what they have expressed in the different mediums used. This will not only help build and hone self-reflection skills but also give an added sense that their voice and work are being heard and valued and can be used in creating tangible changes they deem important within the school environment.

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Secondly, the Mosaic approach can be used in whole class projects and not necessarily on an individual basis. This means that students with diverse abilities can work together towards a common goal using various tools that utilise each individual child’s strengths.

Clinic The use of the Mosaic approach within the clinic might be the most challenging to apply. The difficulties arise not only in view of the shifting of power dynamics that needs to occur between the disabled child and the professional but also in view of the ethical dilemmas that might arise. By acknowledging disabled children’s right to voice and providing the tools to facilitate this voice and recognise it as equally powerful, the clinician may be faced with situations where the direction of the intervention as desired by the disabled child may be in opposition or in conflict with that of the child’s parents or of the clinicians themselves. As a physiotherapist working in a paediatric environment for over ten years, I have encountered this conflict on a number of occasions. This may entail recognising, before their parents, that a disabled child needs to transition from a manual wheelchair to an electrically powered one because of progressive condition. Or a child who feels independent in a wheelchair and therefore refuses to comply during physiotherapy as walking is perceived by the child as an unnecessary, strenuous, time-consuming activity of little or no practical value in everyday life. The professional applying the principles of the Mosaic approach must therefore be prepared to work in situations that can possibly create conflict with the parents. Similarly, through the use of the Mosaic approach, the child may express that they feel overworked, burnt-out even—scenarios which are much more prevalent in young children than you would expect. I have worked with children—aged 2 or less—who attend four different therapy sessions in a day. However, given that they are minors, it is still their parents who have the legal right to decide for their children. Furthermore, although the mental health of the child might be at risk, in the eyes of society, the parents are doing all they can to care for their child and not vice versa. Thus, the clinician who facilitates the child’s voice, through the media constituting the Mosaic approach, may be faced with needing to challenge parents’ care plans for their children. Perhaps it is in the clinical setting where the professional using the Mosaic approach must be most aware of the responsibility and seriousness listening to disabled children with value holds. As professionals, we must recognise that the children we work with are persons in their own right—they are able to recognise what is in their best interest from early on. This may signify that they may not wish to partake in the professional agenda we have laid out for them. One is therefore placed in the delicate situation of questioning our professionally thought-out plans. Here the implications of such a change in plan need to consider whether the child’s life can be endangered should our plan not go ahead, or whether it’s simply

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re-defining the traditional definition of what we adults define as ‘normal’ or the expected route of care. So how can the Mosaic approach be applied in a medical setting? The key is acknowledgement and communication. In the clinical setting, from personal experience, it is easy to forget the child. We are schooled to believe that the parents know their children the best—forgetting that it is the children themselves who know themselves the best. Often, children are spoken over, their medical story being brought up time and again, with little awareness of how this is impacting the child, what issues are concerning the child, and the child’s expectations from our work with them. Thus, the first step should be talking to and listening to the child in a manner that is not tokenistic. It must also be taken into consideration that in some forms of therapy—such as physiotherapy, occupational therapy, and speech therapy—disabled children are seen regularly by the same therapist. This system allows for the creation of a meaningful relationship, which if developed appropriately can allow for the changing of roles necessitated by the Mosaic approach. The child can thus have the opportunity of directing a session, or at least part of it, as well as allowing for negotiation and a collaborative approach towards defining the treatment goals. Such an approach not only encompasses the first stages of the Mosaic approach but also ensures that the third and final stage—allowing for continuity and/or change—is also a component of the child’s clinical journey.

In Conclusion I started this chapter by stating that disabled children are capable of being active directors of their own lives. Throughout my writing, I have explored how the boundaries implemented by age, eloquence of speech, and physical abilities can be flexed and expanded in ways that allow disabled children to transgress our expectations of them. Our role as adults, parents, and professionals is to provide tools for such transgression and to be readily available to actively listen and translate the messages being conveyed. We must respect not only disabled children’s right to be heard but also their right to have at their disposal any aid that facilitates this expression of voice (CRC 1989). I hope to have shown that disabled children are indeed able to recognise the most meaningful areas in the spaces they inhabit and their ability to voice concerns and dreams for the future. The Mosaic approach may appear complex at first but, through re-evaluation of our daily practices, can readily be applied in the different institutions in our lives. I wish to conclude, however, by highlighting an important premise that is often lost in the romanticised and novel idea of listening to children’s voices. We must appreciate and consider responsibly that the voice of the disabled child may not be projecting the message we adults expect to hear. It may directly challenge our views and place us in a position that questions our own personal ideologies and expectations for our children. Thus, if we embark on the important journey that is

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facilitating children’s voice, we must recognise our responsibility into fulfilling this right ethically, responsibly, and in a manner that it is truly the child that is being put at the forefront of our daily practices.

Additional Resources: For an overview of the thinking behind the Mosaic Approach and case studies emerging from the original study designed by Clark and Moss, one can refer to: Clark, A. 2011. Ways of seeing: using the mosaic approach to listen to young children. [online] [Accessed on 20 April  2022] Available from: https://learningaway. org.uk/wp-content/uploads/RL56-Extract-the-Mosaic-Approach-EARLYYEARS.pdf As highlighted in the chapter, listening is an active process that may bring to light different perceptions between children and professionals. In the paper below, such differences as observed in a classroom setting are presented in a tangible manner using vignettes from a research study: Psaila, E. (2017). Voices in the classroom—exploring how the voice of the disabled child and the educational professionals are manifested in the classroom. [online] [Accessed on 20 April  2022] Available from: https://www.mreronline.org/wp-content/uploads/2017/12/3Elvira-Psaila.pdf Narratives are another powerful medium on how professionals can gain insight on the personal experience of disability. A number of autobiographical books are available, one of the most powerful and touching is that authored by Nia Wyn in 2007, titled Blue Sky July.

References Barron, C., Lynch, H., Desoete, A., Coussens, M. and De Maesschalck, K. 2020. Theoretical models for enabling play from: A child centred perspective. In D. Bulgarelli (ed.), Perspectives and research on play for children with disabilities. [online] [Accessed on 16 April 2022] Available from: https://content.sciendo.com/view/title/576216 Bartoli, S. A. 2017. Living an inclusive life: Perceptions of children with neurodevelopmental disorders (Unpublished Masters Dissertation), Malta, University of Malta. Bult, M. K., Verschuren, O., Jongmans, M. J., Lindeman, E. and Ketelaar, M. 2011. What influences participation in leisure activities of children and youth with physical disabilities? A systematic review. Research in Developmental Disabilities 35(5), pp. 1521–1529. Cini, M. 2017. Play and leisure environments as seen through the eyes of a child with sensory processing difficulties and of significant others: Reflections on needs and proposals for change (Unpublished Masters Dissertation), Malta, University of Malta. Clark, A. and Moss, P. 2005. Spaces to play. London: National Children’s Bureau. Clark, A. and Moss, P. 2011. Listening to young children: The Mosaic approach. 2nd edition. London: National Children’s Bureau.

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Elvira Psaila Convention on the Rights of Persons with Disabilities and Optional Protocol. 2006. [online] [Accessed on 20 April 2022] Available from: www.un.org/disabilities/documents/convention/convoptprot-e.pdf. Convention on the Rights of the Child. 1989. [online] [Accessed on 20 April 2022] Available from: www.ohchr.org/en/professionalinterest/pages/crc.aspx Corsaro, W. A. 2005. The sociology of childhood. New bury Park: Pine Forge Press Curran, T. and Runswick-Cole, K. 2013. Disabled children’s childhood studies—Critical approaches in a global context. Hampshire: Palgrave Macmillan. Curran, T. and Runswick-Cole, K. 2014. Disabled children’s childhood studies—A Distinct Approach? Disability and Society 29(10), pp. 1617–1630. De Schauwer, E., Van Hove, G., Mortier, K. and Loots, G. 2008. I need help on mondays, it’s not my day. The other days, I’m OK.—Perspectives of disabled children on Inclusive education. Children and Society 23(2), pp. 99–111. Disability Rights Commission 2006. My school, my family, my life: A study detailing the experience of disabled children, young people and their families in Great Britain in 2006. [online] [Accessed on 15 April 2022] Available from: http://disability-studies.leeds.ac.uk/ files/library/university-of-birminghameducation-my- life-ES-word.pdf Georing, S. 2010. Revisiting the relevance of the social model of disability. The American Journal of Bioethics 10(1), pp 54–55 Kay, E. and Tisdall, M. 2012. The challenge and challenging of childhood studies? Learning from: disability studies and research with disabled children. Children and Society 26, pp. 181–191. Kinglsey, E. P. 1987. Welcome to holland. [online] [Accessed on 19 April 2022] Available from: www.our-kids.org/Archives/Holland.html Mason, J. and Hood, S. 2011. Exploring issues of children as actors in social research. Children and Youth Services Review 3(4), pp. 490–495. [online] [Accessed on 14 February 2022] Available from: www.sciencedirect.com/science/article/abs/pii/S0190740910001556 McColl, M. A. and Adair, B. 2013. The learning collaborative: An approach towards emancipatory research in disability studies. Canadian Journal of Disability Studies 2(1), pp. 71 McLaughlin, J. and Coleman-Fountain, E. 2018. Visual methods and voice in disabled childhoods research: troubling narrative authenticity. Qualitative Research 19(4). [online] [Accessed on 20 April 2022] Available from https://journals.sagepub.com/ doi/10.1177/1468794118760705 Mercieca, D. P. 2013. Living otherwise: Students with profound and multiple disabilities as agents in the educational context. Rotterdam: Sense Publishers Priestley, M. 2003. Disability and childhood, in disability: A life course approach. Cambridge: Polity Press, pp. 61–87. Psaila, E. 2015. Welcome to my life—A journey through the life of a child with a physical disability in malta (Unpublished Masters Dissertation), Malta, University of Malta. Psaila, E. 2017. Voices in the classroom—Exploring how the voice of the disabled child and the educational professional are manifested in the classroom. Malta Review for Education Research 11(2), pp. 171–186. Rancière, J. 1983. The philosopher and his poor. Translated by Drury, J., Oster, C. and Parker, A. Durham: Duke University Press. Rancière, J. 1991. The ignorant schoolmaster—Five lessons in intellectual emancipation. Translated by Ross, K. California: Stanford University Press. Salamanca Statement 1994. [online] [Accessed on 20 March 2022] Available from: www.european-agency.org/sites/default/files/salamanca-statement-and-framework.pdf Stafford, L. 2017. What about my voice: Emancipating the voices of children with disabilities through participant-centred methods. Children’s Geographies 15(5), pp. 600–613. Sullivan, M. 2005. Subjected bodies. In S. Tremain (ed.), Foucault and the government of disability. Michigan: The University of Michigan Press

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Vignette Three MEET LIV

Hello, my name is Liv, and I’m 14 years old. My birthday is in December. I live with my family, my mom, dad, and sister, in Southern California. I’m pretty kind and friendly. I like to play basketball. I like school, especially PE, with my favourite subject being science. I like science because it’s pretty messy, and I’m pretty messy too! When you put something in a tube, it blows up and might make a mess. I do this kind of stuff in my room, and my mom cleans it up. In PE, I play soccer. I’m pretty good at school. I have all As, but I don’t like math. I like where I live because it’s sunny but sometimes cold. I can be just who I am, which is someone who is a different person. I like different things, such as space and basketball. I’d like to go to space camp. I think it’s cool. I’d like to go in a rocket ship one day. I want to be an astronaut. For my hobbies, I like to draw, play video games, watch TV, and I like dogs. I have three: Duke, Daisy, and Toby. I like Toby the best because he is really fluffy. I draw people and people from Descendants 1, 2, and 3. This is a movie. I draw my family. Someday I might draw a picture of my mom. I use markers to draw. My favourite colours are pink, yellow, green, white, and blue. I think that what makes a good friend is being kind, respectful, helpful, and that is how you make good friends. I am all of these things. People don’t listen to my opinion because everyone has their own opinion. I like my life the way that it is. There are a few things that I would change, not having to wear a mask and not going on Zoom, because it’s too much technology and I like being with my friends in person. My friends’ names are McKenna, Ray, and Lexis. I try to help Lexis be kind because sometimes she is nice, but I do try to help her to be kind all of the time. McKenna is so nice, and she has to use her iPad to talk. DOI: 10.4324/9781003056737-16

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I’m too busy to ride my new bicycle now. Because I have homework, school, space videos, and music and playing and cleaning my room. This all takes 60 hours. I watch two million space videos, including about the new telescope, planets, rocket ships, galaxies, and seeing planet Earth and seeing how Mars is red. I like music and play Liv and Maddie and Descendant songs. I have a ukulele, but I don’t play; I just sing. I have a nice voice. Liv is 14 years old and has learning/intellectual disabilities. She lives in the USA. Co-author: Michael Rosenkrantz (SoCal Adaptive Sports).

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12 DISABLED CHILDREN’S PARTICIPATION IN HEALTHCARE DECISION-MAKING Radoš Keravica Introduction Almost all of us have had a lot of experience with doctors and in hospitals. As babies and small children we had many medical examinations. Some of us have even been in hospital for long periods. A few of us have already had major surgery. Some take medication, almost all of us take regular therapies. Doctors probably have a lot of work to do with us. We have had good, but also bad and sometimes very bad experiences with doctors. They are often friendly, but also sometimes rude and impatient. They don’t always take us seriously and sometimes don’t believe us. Even when we are in pain. It can happen that they say: ‘We can’t find anything, you imagine that you are in pain’. Then we feel very bad. (Youth Advisory Board for the Tyrolean Monitoring Committee 2020, p. 4)

The UN Convention on the Rights of the Child (1989) (CRC) introduced Article 12, the right for every child to participate in all matters that affect them, colloquially known as the right to be heard (Lundy 2007). It guarantees the right to all children to freely express their views and those views to be taken into account when decisions are being made. Although the progress in the realisation of this right has been documented in different areas of life, healthcare decision-making has remained an area in which children’s participation has been contested and heavily dominated by adults’ concerns for a child’s protection (Ehrich et al. 2015). Disabled children experience a disproportionately higher number of medical encounters in their childhood in comparison to their non-disabled children. They are often subjected to different forms of remedial treatments which seek to ameliorate the effects of their impairment, reduce pain, increase their body functionality, DOI: 10.4324/9781003056737-17

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or eradicate an impairment altogether, including but not limited to surgical treatments, physiotherapy, speech and language therapy, or other forms of rehabilitation programs (Bricher and Darbyshire 2005; Mclaughlin and Coleman-Fountain 2014). These treatments and related recoveries may lead to long absences from school, long hospital stays, and painful and potentially traumatising experiences. Due to their significant impact on children’s lives, it is important to ensure the ‘right to be heard’ is guaranteed to disabled children and to create space and opportunities for their participation in healthcare decision-making. This chapter argues that the barriers to participation in healthcare decisionmaking disabled children face are related to attitudinal and institutional factors. The former is associated with a preoccupation of adults with the child’s capacities and competence to participate, their views of impairment and disability, and the relative importance they attach to the child’s participation. The latter refers to the embeddedness of the value of participation in institutional cultures in healthcare organisations, adequate skills and training of healthcare professionals to support disabled children’s participation, or available time for it. Further, it is argued that the UN Convention on the Rights of Persons with Disabilities (2006) (CRPD) provides higher human rights standards for children’s participation in decision-making and offers new light in which to interpret and understand Article 12 of the CRC.

What Counts as a Child’s Participation in Healthcare Decision-Making? Disabled children’s participation is approached in this paper from the standpoint of participation in individual healthcare decision-making. Individual healthcare decision-making refers to all decisions related to disabled child’s healthcare affecting their life, including the choices of medical treatments and related procedures as distinct to children’s participation at a more strategic level, such as the healthcare policy planning or healthcare service development (Brady 2020). The meaning of participation of children in decision-making processes is contested, as there is no unequivocal agreement on how it should be defined (Percy-Smith and Thomas 2010). In general, definitions revolve around a hierarchical continuum of children’s involvement in decision-making processes reflecting various degrees of influence children have on the final decisions as the outcomes of decision-making processes. Among the most influential hierarchical typologies of child’s participation is Hart’s ‘ladder of participation’ (see Figure 12.1), which enunciates eight ‘ladder rungs’ of participation, among which the three lowest rungs denote ‘non-participation’ (manipulation, decoration, and tokenism) and the highest ‘rung’ corresponds with child-led initiatives in which decisions are shared with adults (Hart 1992, p. 8). Similarly, Alderson and Montgomery (1996), in their study on children’s healthcare choices, apply the hierarchical conceptual framework of a child’s participation in the area of healthcare. They propose the following classification of levels of a child’s participation in healthcare decision-making: being informed, expressing a view, influencing the decision-making process, and being the main decider (Alderson 210

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Figure 12.1

Image of ladder with eight rungs.

Source: Hart 1992. Children’s participation: from tokenism to citizenship. Florence: UNICEF, International child development centre. p. 8.

and Montgomery 1996). It follows that participation is to be understood as a scale wherein the ultimate level of participation—‘being the main decider’—implies the legal and practical possibility of children and young people to consent to medical treatments (see Figure 12.2). While acknowledging the usefulness of these hierarchical outcome-oriented classifications of levels of participation, especially in terms of measuring the level of influence children exercise in decision-making processes, there is a need to explain what a participation continuum might mean for disabled children and how it can be realised in practice. This paper adopts a view of the participation of disabled children in individual healthcare decision-making as a process through which a child can influence decisions on their own healthcare, bringing about the change in themselves and the healthcare services they use (Brady 2020). Having said that participation is a process, I am interested to explore which actors are involved in this process and what role they might play to support or impede disabled children’s participation. Children’s participation in healthcare decision-making is dependent on the support of adults involved in this process, typically healthcare professionals and parents 211

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Figure 12.2

Graphic with four text boxes placed horizontally from left to right, with an arrow placed between them pointing to the right. Text written in the boxes in the order of appearance is the following: a child is informed; a child has expressed an informed view; a child’s view has been taken into account; a child is the main decision-maker.

or other family members of disabled children. This is why it is important to reflect on the opportunities and constraints arising from the three-way relationships between disabled children, their family members, and healthcare professionals. However, participation of disabled children is also mediated and facilitated through non-human actors, such as international and domestic laws and policies, assistive technologies and communication devices, organisational cultures and practices or material artefacts (in/accessible physical space or information, availability of personnel or equipment). It is realised in an ‘assemblage’ of different human and non-human actors which are interconnected and influence each other in varying degrees and directions (Goodley and Runswick-Cole 2014; Feely 2016; Gibson et al. 2017). Thus, the participation is not an isolated or singular event but multiple events—‘participation’ as a process is something that is continually being produced and reproduced through a complex interplay of the aforementioned human and non-human actors in an ‘assemblage’ (DeLanda 2019; Feely 2020; Fox and Alldred 2015). The following section explores the role of international human rights law and its standards of disabled children’s participation in decision-making as an important discursive practice bearing influence on the national laws, policies, and practices. As such, the legal norms reflect the societal ideas about what children can and should do and shape the practice of child participation. In a Foucauldian sense, the law represents a power–knowledge network that produces and regulates both childhood and disability (Turkel 1990; Tremain 2005). Foucault (1979, p. 144) claimed that: [T]he law operates more and more as a norm, and the juridical institution is increasingly incorporated into a continuum of apparatuses (medical, administrative, and so on) whose functions are for the most part regulatory. A normalizing society is the historical outcome of a technology of power centred on life. The law is to be understood as a technology of power and a ‘procedure of exclusion’ which relegates children’s voices to the peripheries of knowledge (Turkel 1990). It reflects intergenerational power differences whereby children are scrutinised and expected to demonstrate adult-like capacity in order to have their say in matters that concern them. The issue of children’s ‘capacity’ is paid special attention throughout 212

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the analysis of standards of disabled children’s participation enshrined in the CRC and the CRPD and potential divergences between the two human rights treaties.

International Human Rights Law and Disabled Children’s Participation in Healthcare Decision-Making The CRC has challenged the view of childhood as a stage of vulnerability and natural dependency by introducing the participation principle (respecting the views of the child) alongside three other core principles, namely, non-discrimination and equality, primary considerations of the child’s best interests, and the right to survival and development (Committee on the Rights of the Child 2009). The CRC embodies its principle of participation in Article 12, which entitles those children who have the capacity to form a view with the right to express their views in all matters that affect them and to have their views taken seriously by adults. The first paragraph of CRC Article 12 makes it clear that the right of the child to express their views is contingent on their capacity/ability to form them. The CRC Committee’s understanding is that this provision is not to be ‘seen as a limitation, but rather as an obligation of States Parties to assess the capacity of the child to form an autonomous opinion to the greatest extent possible’ (Committee on the Rights of the Child 2009, para. 20). It also stresses that the starting point should be the presumption of capacity rather than incapacity. This poses the question of what constitutes and demonstrates the capacity to form the view and in which situations can this capacity of the child become subject to adults’ assessment. Needless to say, if disabled children are presumed by the healthcare professionals as lacking ‘capacities to form their own views’, that might mean that they are likely to not even seek children’s views on proposed treatments. Further, a requirement to ‘give due weight’ to a child’s views implies that the imperative is not only to listen to the child’s views but to take them seriously into consideration when reaching the final decision (Committee on the Rights of the Child 2009, para. 28). In the determination of how much weight will be given to a child’s views, the child’s capacities should be assessed, and age and maturity taken into account. The CRC Committee (2009, para. 30) defines maturity as the ‘capacity of a child to express her or his views on issues in a reasonable and independent manner’. The usage of the qualifier ‘independent manner’ is indicative of how the CRC Committee conceives concepts of children’s maturity as a marker of independence and self-sufficiency. This understanding establishes an express link between the cognitive abilities of a child and the weight attached to their views. It produces cognitive ableism, as all children who lack this ‘essential’ ability are placed in an inferior position and a ‘diminished state of being’ (Gregor 2008). This poses a particular risk for disabled children whose development may be considered as deviating from the ‘norm’ since their process of acquisition of experiences and abilities may be compromised due to different forms of barriers they face (Priestley 1998; Davis and Watson 2000). It would further abnegate the adults from the responsibility to invest in efforts to support the child to express their views. The Committee has stressed the 213

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importance of providing aid in communication and disability-related accommodations to children to support them to express their views (Committee on the Rights of the Child 2009, paras. 21 and 78) but does not recognise the risk they face of being judged as immature and incompetent due to their impairments. It is noticeable that the CRC Committee, when elaborating the principle of participation in relation to disabled children in its General Comment on children with disabilities, gave a stronger emphasis to the participation of disabled children as a collective through ‘bodies such as parliament, committees and other forums’ and in policymaking processes than it did vis-à-vis their participation in individual matters that affect their lives (Committee on the Rights of the Child 2007, para. 32). The Committee stressed the importance of programmes and services aimed at the prevention of disability, early detection and information, and treatment and rehabilitation for disabled children (Committee on the Rights of the Child 2007, para. 21). Regrettably, there was little to no mention of the importance of participation of disabled children in healthcare, especially in terms of the right to express views in relation to the treatments and services mentioned earlier, which all have a profound and longterm impact on disabled children’s lives. Although the participation of adolescents in individual healthcare decision-making is supported by the recommendation of the CRC Committee in its General Comment 20, where it says that the ‘voluntary and informed consent of the adolescent should be obtained whether or not the consent of a parent or guardian is required for any medical treatment or procedure’ (Committee on the Rights of the Child 2016, para. 39), there is no such parallel in its General Comment on disabled children. The evident emphasis on welfarist concerns of the CRC Committee in relation to disabled children and its medicalised approaches to disability has also been recognised by Andrea Broderick, who asserts that the CRC regards disabled children as ‘subjects of protection, requiring “special care” and “rehabilitation” ’ (Broderick 2017, p. 197). In my view, this omission is not accidental, as the Committee’s emphasis on special protection of disabled children through access to and availability of programmes and services for prevention, detection, and treatment of impairments corresponds to its understanding of impairment as disruptive to a child’s development. Thus, if minimisation of the impairment or the absence of it is understood as necessary for a child’s proper development, then such an aspect would constitute a child’s best interests (Campoy Cervera 2017a). Consequently, in consideration of any health treatments which seek to enhance bodily functions or minimise the effects of the impairments, the treatment would likely be deemed in the child’s best interests, making it easier to override the child’s opinion if it goes against the healthcare professional’s recommendation. The CRPD, adopted in 2006, includes a standalone article on disabled children (Article 7). The third paragraph of Article 7 refers to the rights of disabled children to be heard and draws from the text of Article 12 of the UNCRC while bringing added value to it in two important ways. First, it leaves out the condition of having the capacity to form the views (making sure in that way that no disabled child is precluded from participation based on presumed incapacity). Second, it adds the 214

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requirement for the states parties to provide disabled children with ‘disability and ageappropriate assistance to realize that right’. This requirement is particularly important as it counteracts the view that the signifier of sufficient capacity is an ability to express in an ‘independent’ manner. Instead, it recognises that disabled children may require various forms of additional support to fully enjoy and exercise their human rights due to environmental barriers. This is a significant qualitative difference and the value shift from ‘independence’ towards ‘interdependence’ as it acknowledges the responsibility of adults to provide support and maximise the capacities of children in that way in participation processes (Broderick 2017). Another aspect of the CRPD that is relevant to disabled children’s right to be heard is the right to equal recognition before the law enshrined in Article 12. The paradigm of Article 12 of the CRPD is that mental capacity and legal capacity are different concepts and should not be conflated, thus prohibiting any form of legal capacity deprivation based on presumed mental incapacity. Instead, supported decision-making regimes should replace guardianship systems (Flynn and Arstein-Kerslake 2014). Although the value of CRPD Article 12 for disabled adults is uncontested, it is less clear what—if any—relevance it has for children’s rights. Still, its influence on the interpretation of the CRC is evident in the CRC Committee’s General Comment 20 on the rights of the child in adolescence. There, the CRC Committee made explicit reference to supported decision-making, stating the following: ‘Adolescents with disabilities should, in addition, be provided with opportunities for supported decision-making in order to facilitate their active participation in all matters concerning them’ (Committee on the Rights of the Child 2016, para. 32). I have pointed out earlier to the Committee’s expectation that the child expresses their views autonomously in a ‘reasonable and independent manner’ in relation to the child’s maturity (Committee on the Rights of the Child 2009). In that light, the Committee’s mention of supported decision-making is a positive development with possible consequences for the reframing of children’s legal capacity and autonomy. Various authors advocate for the universality of legal capacity for all people, including children, and an extension of supported decision-making systems for children in the same vein as for adults with intellectual and psychosocial impairments (Sandland 2017a; Clark 2018; Campoy Cervera 2017b). Campoy Cervera (2017a) claims that the limitations of children’s legal capacity are inconsistent with the human rights model and universality of legal capacity enshrined in Article 12 of the CRPD and considers them as a feature of a ‘renewed protectionism’ paradigm underpinning the CRC. He claims: The contrary would mean assuming that Article 12 of the CRPD establishes the support model instead of the will-substitution model for all people with disabilities, regardless of type or extent, but excludes (without justification), children from this concept of a person, permitting the will-substitution model to continue in force only for the child. (Campoy Cervera 2017b p. 30) 215

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Sandland (2017b) also points out that the CRPD has attempted to move away from decision-making capacity assessments of adults, which served to justify the restrictions of a person’s legal capacity and questions the justification of retaining the best interests approach to children’s decision-making if the supported decision-making model could be applied to them on the same basis as to disabled adults. Clark (2018) argues that the CRPD contains the potential to extend the legal capacity not only to disabled children but also to children as a class as its introduction of support (disability- and age-appropriate assistance) for the exercise of autonomy represents the move towards a relational understanding of autonomy. Nevertheless, what is incontestable is that children can obtain legal capacity in certain areas of law before the age of majority if the law sets another age limit for exercising certain rights freely and independently. Most European countries prescribe the statutory age of consent to medical treatments between 12 and 18 (Day et al. 2015). It follows that a disabled minor who has reached the age of consent and thus acquired legal capacity in this particular area of law could potentially benefit from supported decision-making. But was the CRC Committee’s intention to introduce supported decision-making only for those disabled adolescents who have reached the legal capacity in a particular area of law by virtue of their age? Let us look again at the Committee’s reference to supported decision-making in their General Comment No. 20. According to the CRC Committee, supported decision-making for disabled adolescents should serve the purpose ‘to facilitate their active participation in all matters concerning them’ (Committee on the Rights of the Child 2016). This means that the CRC Committee put the supported decision-making concept in the context of participation rights for children, extending its reach and purpose beyond the legal capacity. Supported decision-making thus becomes relevant as the concept not only for disabled adults or for those children who have attained legal capacity before the age of majority but for participation rights of all disabled children. In the context of healthcare decision-making, the human rights standards elaborated previously mean that healthcare professionals should not fail to inform a disabled child on proposed treatment and accompanying procedures in a manner accessible to the child and cannot deny the opportunity to a disabled child to express their views on proposed treatment and course of actions. Moreover, the ‘expression of views’ should not be limited to verbal modes of expression, and non-verbal communication, including non-verbal expressions of pain, discomfort, or similar should be taken as forms of a child’s ‘views’. The existence of impairment should never be the reason to assume that the child does not possess the capacity to express their views. If a disabled child uses communication devices or other assistive technologies, additional time required to communicate with a disabled child must never be an excuse not to engage in communication. If the views of a child contradict the proposed treatment, adults involved in the decision-making process should be able to demonstrate how they have taken their views into account, and if a decision has been made to pursue the treatment despite the child’s views, it should be demonstrable how such decision is in the child’s best interests. This section has mapped out the key requirements of international human rights law that bear relevance for disabled children’s participation in healthcare 216

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decision-making and that should be translated into national policies and practices. Still, the realities of disabled children’s participation in healthcare decision-making diverge from the guarantees made in the human rights treaties. Moving forward necessitates an understanding of the key barriers disabled children face in the area of participation in healthcare decision-making, and the next section provides a brief and certainly not exhaustive overview of these barriers.

The Barriers to Participation in Healthcare DecisionMaking Disabled Children May Face Disabled children are facing a heightened risk of exclusion from participation due to their status as children and because of disability (Lansdown et al. 2013). This section highlights and systematises some of the barriers disabled children face, including attitudinal and institutional ones. The issue of children’s consent to medical interventions as a specific form of a child’s participation in healthcare decision-making has been covered extensively in the literature (Alderson 1993; Alderson and Montgomery 1996; Fundudis 2003; Alderson 2007). Health laws that regulate consent are mainly concerned with identifying the main decision-maker and use age-based or competence criteria to restrict children’s decision-making powers (Lansdown 2005; Ehrich et al. 2015). The focus on children’s competence to consent calls for a more thorough discussion on the impact of competence assessments on the participation rights of disabled children. However, this is not the scope of this chapter, and this section offers a reflection on the barriers children face in other stages of healthcare decision-making proposed by Alderson and Montgomery (1996): being informed, expressing a view, and influencing a decision-making process. The participation of children is heavily dependent upon the establishment of positive three-way relationships between disabled children, healthcare professionals, and parents. The attitudes and professional or parenting practices significantly influence the participation process, either positively or negatively (Franklin and Sloper 2005; Coyne 2006; McNeilly et al. 2017). Though parents or carers are instrumental to children’s participation in healthcare decision-making, it cannot automatically be assumed that they will act as enablers of a child’s participation. Research by McNeilly et al. (2017) has shown that parents, and in particular, parents of disabled children, can display overprotective attitudes towards their disabled children and may, for these reasons, withhold information on impairment and medical interventions, effectively limiting children’s access to information significant for meaningful participation. Children who are adequately prepared and informed by parents before their encounters with healthcare professionals can participate more effectively in healthcare decision-making. The role of the parents is thus an ambiguous one. While some parents act as enablers of their child’s participation and insist that healthcare professionals communicate to their children or help facilitate communication between their children and healthcare professionals, others assume the role of their child’s advocate and, in that way, reduce the space for interaction of healthcare professional and a 217

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child creating the barrier for their child’s participation (Alderson 1990; Coyne 2006; McNeilly et al. 2017). The attitudes of parents towards impairment have also proved to be a potential barrier to participation. Parents who believe that there is no point in communicating to their child their complex medical information, as they assume the child would not understand it due to their impairment, may not challenge healthcare professionals’ lack of communication with their child. When it comes to impairment-related medical interventions which seek to ‘fix’ or even cure an impairment, the position of parents is even more delicate. Avery (1999) claims that parents are socialised into tragedy view of disability as soon as a disabled child is born. For this reason, they can feel the urge to look for the ‘medical fix’ and side with healthcare professionals even against the wishes of the child, leaving the latter disempowered, with little control of what is going to happen to them (Bricher and Darbyshire 2005; Franklin and Sloper 2005). A process of determination of the disabled child’s best interests in the context of impairment-related medical interventions might be fraught with antithetical arguments that need to be taken into consideration. The wish of the parents/carers of the child themselves to pursue certain medical treatment may be driven by cosmetic reasons rather than an increase in body functionality (Parens 2006). Even if the goal of the proposed medical treatment is to increase bodily functions, the outcome can be uncertain, as most of the impairments cannot be eradicated completely and promises of heightened functionality may not become true, or at least not to the expected extent (Bricher and Darbyshire 2005). The adults involved in decision-making on the disabled child’s health have to take into consideration, on the one hand, the disruptive potential of proposed medical intervention (e.g. long hospital stays and recovery periods, absences from school, experiences of pain) and, on the other hand, potential benefits of the intervention and level of un/certainty for achieving desired results. Moreover, the views of a disabled child should be sought and taken into account in the final decision. Some studies have shown that disabled children tend to develop a higher level of understanding of their medical conditions and related treatments due to acquired experience (Alderson 1993; Mclaughlin and Coleman-Fountain 2014), which is the reason more for adults to actively consult them in these matters. It should be borne in mind that a child’s participation in any decision-making process should be based on voluntariness, subject to the child’s desire and choice to participate. In fact, the studies which collected data on children’s experiences in healthcare decision-making have consistently shown that children tend to prefer to share the decision on their healthcare with adults, usually their parents (Coyne 2006; Franklin and Sloper 2009; Mclaughlin and Coleman-Fountain 2014). Thus, it is up to practitioners to check with the child what is their desired level of participation rather than assuming that participation is an end in itself (Alderson 2001). The attitudes of healthcare professionals significantly impact communication and access to information for children and young disabled people as patients. Research has found that attitudes of paediatricians towards childhood and adolescence are sometimes patronising, seeing children as immature, incompetent to participate, and in need of protection and care (Beresford and Sloper 2003; Parsons et al. 2016). 218

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Direct communication between healthcare professionals and adolescents has been proven to contribute to higher compliance with medical requirements and a better understanding of the condition, but the communication of healthcare professionals tends, however, to be directed to parents, at the expense of communication with children and young people (Beresford and Sloper 2003; Parsons et al. 2016). The focus of the conversations is often on the child’s condition rather than their person, and the overuse of complex medical terminology by healthcare professionals can also preclude children’s participation. Healthcare professionals also need to be ready to discuss wider social implications of children’s conditions, including lifestyle and desired behaviours, or to share advice on how children can manage their condition and live with it. The statement of young disabled people given at the conference on children’s rights and medicine in Austria highlights the lack of communication between disabled children and healthcare professionals: Many of us often do not understand what doctors are saying. Most of the time there is no time for us to ask questions. That makes us angry. Our parents or carers then have to explain everything to us. People talk about us again and again, but not with us, even though we are there. Then we feel like a number, but not a person. Doctors sometimes see too little the whole girl or the whole boy. For example, they only see the part of the body that needs surgery, but they don’t see the rest of the child who owns the part of the body. (Youth Advisory Board for the Tyrolean Monitoring Committee 2020, p. 4) A disabled teenage boy from Serbia who I interviewed as part of my ongoing research on disabled children’s participation in healthcare decision-making shared his experience with the paternalistic attitudes of healthcare professionals: I didn’t have a chance to ask anything. In most of the cases, he [speaking of his doctor] ignored me and led the conversation with my father or mother, and he ignored me completely so . . . I was present there just like some sort of object to test his new ideas. Particular difficulties for healthcare professionals who have clinical responsibilities for children arise in the case of conflict between a child’s protection and participation rights—for example, when there might be a concern that respecting a child’s wishes may lead to harm for the child (Ehrich et al. 2015; Brady 2020). Such situations may call for a balancing exercise in which the concerns for child’s welfare and protection, along with the views of children as vulnerable and incompetent, may prevail at the cost of their participation. The type of decision which is at stake has been recognised as a significant factor in healthcare professionals’ attitudes towards child participation, as they tend to support a child’s participation in ‘smaller’ decisions and choices rather than seeking children’s input in more important deliberations on medical treatments (Parsons et al. 2016). 219

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The study by Franklin and Sloper (2009) on the participation of disabled children in decisions related to their care and service development has shown that, in order to be meaningful, children’s participation needs to be supported institutionally and embedded in organisational culture. If that is not the case, there is a risk that participation becomes regarded as an isolated event, implemented on an ad hoc basis as a result of the dedication of a few committed staff members. Once those committed professionals leave the organisation, the know-how of participation and created resources tends to be under-utilised or even completely disregarded (Franklin and Sloper 2009). Unfortunately, there is evidence that children and young people are not systematically involved in healthcare decision-making and that their participation in practice depends very largely on individuals’ commitment (Brady 2020). Another form of institutional barrier to disabled children’s participation is reflected in a lack of adequate training for skills development for healthcare professionals who work directly with children (Coyne 2006). Multiple studies have reported that the participation of disabled children is significantly diminished when professionals do not have communication skills or the knowledge of participation methods. The lack of knowledge and skills becomes even more pronounced when their clients are disabled children who do not communicate verbally and require alternative forms of communication, placing the children with cognitive impairments at heightened risk of exclusion from participation (Beresford and Sloper 2003; Franklin and Sloper 2009). Time constraints can also play a significant role in limiting disabled children’s participation in multiple ways. The issue of time comes to the surface in the context when children use alternative forms of communication and/or assistive technologies and require additional time to receive information in an adequate manner or to express their views. Healthcare professionals may interpret these needs as the lack of capacity to understand the information or to express their views and shift the focus of conversation towards parents as proxies for the child’s voice (Franklin and Sloper 2009). Furthermore, time is described as a significant factor to develop the relationship of trust with the child, gain familiarity with their access needs or communication patterns, and plan enough time for meaningful participation. Research by Beresford and Sloper (2003), which included the experiences of young people with chronic conditions, confirmed that the brevity of clinical appointments and feelings of being rushed adversely affected the opportunity to develop the relationship of trust between doctors and young people. Allocating sufficient time for participation can be particularly challenging when healthcare professionals operate under time pressure and organisational demands for efficiency in under-resourced healthcare systems and can devote limited time to each patient (Runeson et al. 2001; Franklin and Sloper 2009). Finally, the barrier to participation can be reflected in children’s lack of confidence and hesitance to talk to healthcare professionals and ask questions, in particular, questions related to medical conditions perceived by young people as intimate or private. Again, the role of adults in boosting children’s confidence is critical. The children of parents who invested time to prepare them and inform them before medical encounters were usually more confident, and healthcare professionals who communicated with children directly and encouraged their participation were perceived 220

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by children as approachable, giving them a sense of equality (Beresford and Sloper 2003; McNeilly et al. 2017).

Conclusion The ideas about disabled childhoods have traditionally been underpinned by the tragic view of disability, resulting in the urge among adults, healthcare professionals, and parents alike to search for the ‘cure’ or medical fix (Bricher and Darbyshire 2005; Oliver and Barnes 2012). The common experience of disabled childhood is an exposure to a host of remedial surgeries or other treatments attempting to move disabled bodies as close as possible to the ideal of ‘normal’ (Cooper 2013; Mclaughlin and Coleman-Fountain 2014). If an impairment is seen only through a biological lens as disrupting ‘normal’ development leading to deficiency, the development of a child’s positive identity may be impeded by the implicit messages sent to the child that their body should be fixed to be accepted (Runswick-Cole et al. 2018). Perceptions of disability as a problem in need of fixing imply that any treatment undertaken with a goal to eradicate impairment or at least reduce its effects must be in the child’s best interests. Long recoveries, absence from school, painful experiences, or inability to engage in favourite activities during recovery are not sufficiently valid considerations and can easily be trumped by the goal to remedy or eradicate impairment altogether. However, if we are to move away from disability perceived as personal tragedy, all these considerations need to be taken into account, making sure that disabled children have their say in decisions on remedial surgeries and treatments. The value of including a disabled child in these decisions can be an insight into what constitutes a ‘good quality of life’ for that child and might help to view the child as a ‘being’ with aspirations and desires rather than viewing a child through disability as ‘abnormality’ which needs to be restored towards an ideal of ‘normal’ by any means. This does not mean that each impairment-related medical intervention is considered a ‘pursuit of normality’ or is unnecessary, but that such decisions need to avoid seeing impairment as inherently negative, taking into account the child’s views and both the social and medical impact of the treatment on child’s life. The principle of the best interests of the child is fraught with value judgements. Depending on who we ask about the best interests of the child, we may reach differing judgements based on different values people hold (Freeman 1997). Parents and healthcare professionals may think that ‘normalisation’ is always in the child’s best interests. Listening to disabled children’s views on what they perceive as constituting a good life allows for the child’s voice to be included in the process of best interests determination. A failure to ensure that disabled children are informed in the process of healthcare decision-making and have their say may lead to heightened distress throughout and after the treatment and the resistance of the child to comply with the requirements in the processes of recovery and rehabilitation (Alderson 1993; Bricher and Darbyshire 2005). Despite the difficulties associated with monitoring and measuring the outcomes of participation in healthcare decision-making for children’s well-being, the studies have been reporting the positive outcomes, such as the children’s feelings of 221

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being valued when they were listened to by adults, gained confidence, and new skills acquired (Franklin and Sloper 2009). International human rights law, in particular the CRC and CRPD, provides standards for children’s participation in matters that affect them, which include individual healthcare decision-making. The CRPD provides added value to the norms enshrined in CRC, especially in Article 7, as it draws attention to the need to provide children with disability- and age-appropriate accommodations and supported decision-making mechanisms when needed. It remains questionable to what extent these obligations have trickled down into national policies and practice, given the barriers to participation disabled children still face. Still, the mention of supported decision-making systems for disabled children in the context of their participation rights is a very welcome development, especially in the context of the inhibitive potential of parents and healthcare professionals to children’s participation in healthcare decision-making. Thinking about supported decision-making for disabled children and young people in the context of healthcare and, in particular, impairment-related interventions leads us to think about the role of voluntary organisations, disabled people’s organisations (DPOs), peer support or support by other disabled people with experiences of the same conditions and/or similar medical treatments. Their role in ‘participation assemblage’ can be particularly significant to inform deliberation on healthcare choices, boost the confidence of children and young people, and help them learn about their conditions and potential risks and benefits of proposed remedial treatments. Further, the consideration of these actors expands the ‘participation assemblage’ beyond the three-way relationship between children, healthcare professionals, and parents/carers. Assemblage thinking is pertinent to Deleuzo-Guattarian ‘flat ontology’, wherein participation is produced through affects between the assemblage components (DeLanda 2019; Feely 2020). To answer the question of what makes child participation in healthcare decision-making more or less successful, one needs to think about the components of ‘participation assemblage’ and how they come into being. These components may include human and non-human actors and material and discursive components which all have the productive capacity to affect each other. Seeing participation as an ‘assemblage’ leads us to think about how welcoming and inviting hospital spaces or examination rooms are for children or how adults’ perceptions of childhood and disability and adults’ ideas of children’s capacities impede or enable disabled children’s participation. It leads us to think about the artefacts, such as assistive technologies and audio-visual materials, that can be deployed to enhance children’s understandings of proposed medical treatments and procedures or even about the healthcare systems and available funding as structures which may support or constrain children’s participation. Participation in healthcare decision-making is not an isolated event. It is a product of components brought into life by an adult’s actions. Instead of asking the question of whether children have enough capacity and competence to participate, one would do well by asking the question, ‘What competences should the adults have to support disabled children to participate?’ 222

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Open access resources Committee on the Rights of the Child. 2007. General comment No. 9 [online] [Accessed on 22 April 2022] Available from: https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download.aspx?symbolno=CRC%2fC%2fGC%2f 9%2fCorr.1&Lang=en Committee on the Rights of the Child. 2009. General comment No. 12. [online] [Accessed on 22 April 2022]. Available from: https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download.aspx?symbolno=CRC%2fC%2fGC%2f 12&Lang=en Day, L., Percy-Smith, B., Ruxton, S., McKenna, K., Redgrave, K., Ronicle, J., Young, T., European Commission, Directorate-General for Justice and Consumers, Ecorys United Kingdom Ltd, University of the West of England, B. and Child-to-Child Trust, I. of E. 2015. Evaluation of legislation, policy and practice of child participation in the European Union (EU): Final report. [online]. Luxembourg: Publications Office. [Accessed on 22 April 2022] Available from: https://op.europa.eu/ en/publication-detail/-/publication/3f3c50b2-6a24-465e-b8d1-74dcac7f8c42 Hart, R. A. 1992. Children’s participation: From tokenism to citizenship. Florence: UNICEF, International child development centre. [online] [Accessed on 22 April 2022] Available from: https://www.unicef-irc.org/publications/100-childrens-participation-from-tokenism-to-citizenship.html Lansdown, G. 2005. The evolving capacities of the child. Florence: UNICEF. [online] [Accessed on 22 April  2022] Available from: https://www.unicef-irc.org/ publications/384-the-evolving-capacities-of-the-child.html Lansdown, G., Berman Bieler, R. and Mitra, G. 2013. TAKE US SERIOUSLY! engaging children with disabilities in decisions affecting their lives. [online]. [Accessed on 22 April  2022] Available from: https://sites.unicef.org/disabilities/files/ Take_Us_Seriously.pdf Youth Advisory Board for the Tyrolean Monitoring Committee. 2020. Keynote of the Youth Advisory Board for the Tyrolean Monitoring Committee Conference, Child. Right. Medicine. [online] [Accessed on 22 April 2022] Available from: https://www.tirol.gv.at/fileadmin/themen/gesellschaft-soziales/ UN-Konventionen/Jugendbeirat/Text_Keynote_Youth_Advisory_Board_ September_2020_.pdf

Disclaimer This chapter has been produced under the Disability Advocacy Research in Europe (DARE) project that received funding from the European Union’s Horizon 2020 research and innovation programme under the Marie Skłodowska-Curie grant agreement No. 814249. The content of this publication represents the views of the author 223

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only and is his/her sole responsibility. The European Commission does not accept any responsibility for use that may be made of the information it contains.

References Alderson, P. 1993. Children’s consent to surgery. Buckingham: Open University Press. Alderson, P. 1990. Choosing for children: Parents’ consent to surgery. Oxford: University Press. Alderson, P. 2001. Research by children. International Journal of Social Research Methodology 4(2), pp. 139–153. Alderson, P. 2007. Competent children? Minors’ consent to health care treatment and research. Social Science & Medicine 65(11), pp. 2272–2283. Alderson, P. and Montgomery, J. 1996. Health care choices: Making decisions with children. London: Institute for Public Policy Research. Avery, D. 1999. Talking ‘tragedy’: Identity issues in the parental story of disability. In M. Corker and S. French (eds.), Disability discourse. Disability, Human rights, and society. Buckingham: Open University Press, pp. 116–126. Beresford, B. A. and Sloper, P. 2003. Chronically ill adolescents’ experiences of communicating with doctors: A qualitative study. Journal of Adolescent Health 33(3), pp. 172–179. Brady, L. M. 2020. Introduction: Embedding young people’s participation in healthcare. In L.-M. Brady (ed.), Embedding young people’s participation in health services—New approaches. Bristol: Policy Press, pp. 1–27 Bricher, G. and Darbyshire, P. 2005. I know my body, I’ve lived in it all my life: Therapy, surgery and remediation experiences of young people with disabilities. Contemporary Nurse 18(1–2), pp. 18–33. Broderick, A. 2017. Article 7 Children with Disabilities. In V. Della Fina, R. Cera and G. Palmisano (eds.), The United Nations convention on the rights of persons with disabilities: A commentary. Cham: Springer, pp. 195–212. Campoy Cervera, I. 2017a. Legal analysis of article 7 of the convention on the rights of persons with disabilities: Children with disabilities. Age of Human Rights Journal. (9), pp. 116–141. Campoy Cervera, I. 2017b. Ideas for the construction of a human rights model for children, with and without disabilities. In C. O’Mahony and G. Quinn (eds.), Disability law and policy: An analysis of the UN convention. Dublin: Clarus Press, pp. 17–32. Clark, S. 2018. The (Dis)ability of child rights? Oslo Law Review 5, pp. 42–66. Committee on the Rights of the Child. 2007. General comment No. 9 on the rights of children with disabilities. [online] [Accessed on 22 April 2022] Available from: https:// tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download.aspx?symbolno=CRC% 2fC%2fGC%2f9%2fCorr.1&Lang=en Committee on the Rights of the Child. 2009. General comment No. 12 on the right of the child to be heard. [online] [Accessed on 22 April 2022] Available from: https://tbinternet. ohchr.org/_layouts/15/treatybodyexternal/Download.aspx?symbolno=CRC%2fC%2fGC %2f12&Lang=en Committee on the Rights of the Child. 2016. General comment No. 20 on the implementation of the rights of the child during adolescence. [online] [Accessed on 22 April 2022] Available from: https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download. aspx?symbolno=CRC%2fC%2fGC%2f20&Lang=en Convention on the Rights of Persons with Disabilities and Optional Protocol. 2006. [online] [Accessed on 22 April 2022] Available from: www.un.org/disabilities/documents/convention/convoptprot-e.pdf. Convention on the Rights of the Child 1989. [online] [Accessed on 22 April 2022] Available from: www.ohchr.org/sites/default/files/crc.pdf Cooper, H. 2013. The oppresive power of normalcy in the lives of disabled children: Deploying history to denaturalize the notion of the ‘normal child’. In K. Runswick-Cole and T.

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Disabled Children’s Participation in Healthcare Decision-Making Curran (eds.), Disabled children’s childhood studies: Critical approaches in a global context. Basingstoke: Palgrave Macmillan, pp. 136–151 Coyne, I. 2006. Consultation with children in hospital: Children, parents’ and nurses’ perspectives. Journal of Clinical Nursing 15(1), pp. 61–71. Davis and Watson 2000. Disabled children’s rights in every day life: Problematising notions of competency and promoting self-empowerment. The International Journal of Children’s Rights 8(3), pp. 211–228. Day, L., Percy-Smith, B., Ruxton, S., McKenna, K., Redgrave, K., Ronicle, J., Young, T., European Commission, Directorate-General for Justice and Consumers, Ecorys United Kingdom Ltd, University of the West of England, B. and Child-to-Child Trust, I. of E. 2015. Evaluation of legislation, policy and practice of child participation in the European Union (EU): final report. [Online] Luxembourg: Publications Office. [Accessed on 15 November 2021] Available from: http://bookshop.europa.eu/uri?target=EUB:NOTICE :DS0514101:EN:HTML. DeLanda, M. 2019. A new philosophy of society: Assemblage theory and social complexity. Bloomsbury Publishing. Ehrich, J., Pettoello-Mantovani, M., Lenton, S., Damm, L. and Goldhagen, J. 2015. Participation of children and young people in their health care: Understanding the potential and limitations. The Journal of Pediatrics 167(3), pp. 783–784. Feely, M. 2016. Disability studies after the ontological turn: A return to the material world and material bodies without a return to essentialism. Disability & Society 31(7), pp. 863–883. Feely, M. 2020. Assemblage analysis: An experimental new-materialist method for analysing narrative data. Qualitative Research 20(2), pp. 174–193. Flynn, E. and Arstein-Kerslake, A. 2014. The support model of legal capacity: Fact, fiction, or fantasy? Berkeley Journal International Law 32, pp. 124. Foucault, M. 1979. The history of sexuality. An introduction. London: Allen Lane. Fox, N. J. and Alldred, P. 2015. New materialist social inquiry: Designs, methods and the research-assemblage. International Journal of Social Research Methodology 18(4), pp. 399–414. Franklin, A. and Sloper, P. 2005. Listening and responding? Children’s participation in health care within England. The International Journal of Children’s Rights 13(1–2), pp. 11–30. Franklin, A. and Sloper, P. 2009. Supporting the participation of disabled children and young people in decision‐making. Children & Society 23(1), pp. 3–15. Freeman, M. 1997. The best interests of the child? Is the best interests of the child in the best interests of children? International Journal of Law, Policy and the Family 11(3), pp. 360–388. Fundudis, T. 2003. Consent issues in medico-legal procedures: How competent are children to make their own decisions? Child and Adolescent Mental Health 8(1), pp. 18–22. Gibson, B. E., King, G., Teachman, G., Mistry, B. and Hamdani, Y. 2017. Assembling activity/setting participation with disabled young people. Sociology of Health & Illness 39(4), pp. 497–512. Goodley, D. and Runswick-Cole, K. 2014. Becoming dishuman: Thinking about the human through dis/ability. Discourse: Studies in the Cultural Politics of Education 37(1), pp. 1–15. Gregor, W. 2008. The politics of ableism. Development 51(2), pp. 252–258. Hart, R. A. 1992. Children’s participation: From tokenism to citizenship. Florence: UNICEF, International child development centre. [online] [Accessed on 22 April 2022] Available from: www. unicef-irc.org/publications/100-childrens-participation-from-tokenism-to-citizenship.html Lansdown, G. 2005. The evolving capacities of the child. Florence: UNICEF. [online] [Accessed on 22 April 2022] Available from: www.unicef-irc.org/publications/384-the-evolvingcapacities-of-the-child.html Lansdown, G., Bieler, R. B. and Mitra, G. 2013. Take us seriously!. Engaging children with disabilities in decisions affecting their lives. UNICEF. [online] [Accessed on 22 April 2022] Available from: https://sites.unicef.org/disabilities/files/Take_Us_Seriously.pdf Lundy, L. 2007. Voice is not enough: conceptualising Article 12 of the united nations convention on the rights of the child. British Educational Research Journal 33(6), pp. 927–942.

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Radoš Keravica Mclaughlin, J. and Coleman-Fountain, E. 2014. The unfinished body: The medical and social reshaping of disabled young bodies. Social Science & Medicine 120, pp. 76–84. McNeilly, P., Macdonald, G. and Kelly, B. 2017. The participation of parents of disabled children and young people in health and social care decisions. Child: Care, Health and Development 43(6), pp. 839–846. Oliver, M. and Barnes, C. 2012. The new politics of disablement. London: Macmillan Education, Palgrave Macmillan. Parens, E. 2006. Surgically shaping children technology, Ethics, and the pursuit of normality. Baltimore: Johns Hopkins University Press. Parsons, C. S., Dedding, C. W. M., Schalkers, I. and Bunders-Aelen, J. G. F. 2016. Health professionals’ perspectives on children’s and young people’s participation in health care: A qualitative multihospital study. Journal of Clinical Nursing 25(7–8), pp. 1035–1044. Percy-Smith, B. and Thomas, N. 2010. A handbook of children and young people’s participation: Perspectives from theory and practice. London : Routledge. Priestley, M. 1998. Childhood disability and disabled childhoods: Agendas for research. Childhood 5(2), pp. 207–223. Runeson, I., Enskär, K., Elander, G. and Hermerén, G. 2001. Professionals’ perceptions of children’s participation in decision making in healthcare. Journal of Clinical Nursing 10(1), pp. 70–78. Runswick-Cole, K., Goodley, D. and Lawthom, R. 2018. Resilience in the Lives of disabled children: A many splendoured thing. In K. Runswick-Cole, T. Curran and K. Liddiard (eds.), The palgrave handbook of disabled children’s childhood studies. London: Palgrave Macmillan, pp. 425–442 Sandland, R. 2017a. A clash of conventions? Participation, power and the rights of disabled children. Social Inclusion 5(3), pp. 93–103. Sandland, R. 2017b. Lessons for children’s rights from disability rights? In W. Vandenhole, E. Brems and E. Desmet (eds.), Children’s rights law in the global human rights landscape: isolation, inspiration, integration?. Routledge, pp. 109–128. Tremain, S. 2005. Foucault and the government of disability. Ann Arbor: University of Michigan Press. Turkel, G. 1990. Michel foucault: Law, power, and knowledge. Journal of Law and Society 17(2), pp. 170–193. Youth Advisory Board for the Tyrolean Monitoring Committee 2020. Keynote of the youth advisory board for the tyrolean monitoring committee conference ‘child. right.medicine’. [Online] [Accessed on 6 December 2021] Available from: www.tirol.gv.at. www.tirol.gv.at/ fileadmin/themen/gesellschaft-soziales/UN-Konventionen/Jugendbeirat/Text_Keynote_ Youth_Advisory_Board_September_2020_.pdf.

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13 PARTICIPATION OF DISABLED CHILDREN IN HEALTH GUIDELINES DEVELOPMENT Kevin De Sabbata and Elena Syurina Children’s participation in healthcare decision-making regarding them can be beneficial both for the child’s development and for the quality of health services (Dedding 2009). Indeed, it increases the child’s autonomy, supports their self-confidence, and achieves a better match between healthcare services and patient’s needs (UNICEF 2005). In addition, through the participation process, it is possible to make use of the experiential knowledge of children and their parents (Caron-Flinterman, Broerse and Bunders 2005). Children, and disabled children in particular, have traditionally been seen as individuals in need of protection, incapable of choosing for themselves, but they are now increasingly recognised as social actors with their own values and interests (McCafferty 2017). Crucial in this sense have been provisions such as Article 12 of the UN Convention on the Rights of the Child (1989) (CRC), together with the work of the UN Committee on the Rights of the Child (CRC Committee), which requires that children are heard also on healthcare matters (CRC Committee 2009). Moreover, the rise of the disability rights movement, with the slogan ‘Nothing about us without us’ (Waldschmidt et al. 2015), has resulted in the revolutionary statements contained in Articles 12 and 25 of the UN Convention on the Rights of Persons with Disabilities (2006) (CRPD) and in General Comment No.1 by its UN Committee (CRPD Committee) (CRPD Committee 2014) regarding the right to legal capacity and to decide on treatment by disabled people. Participation can happen at different levels, ranging from the individual or micro level, in which the child and their parents are involved in individual health choices or decisions concerning a specific treatment, to the macro level, which refers to policymaking and development of health-related medical guidelines. However, disabled children suffer a ‘double jeopardy’, as they face both social barriers related to their young age and to their impairment. In addition, also due to the nature of guideline DOI: 10.4324/9781003056737-18

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development processes, the (still-limited) existing initiatives in the area of healthcare decision-making of disabled children tend to concentrate on the micro level (Carman et al. 2013). For this reason, our chapter concentrates on the macro level of healthcare decision-making by disabled children and, in particular, on their involvement in health guidelines development. Health guidelines are defined as ‘systematically developed statements to assist practitioners and patients to make decisions about appropriate health care for specific circumstances’ (WHO 1997, p. 1). They are a tool which is at the heart of evidence-based medicine (EBM), defined as ‘the conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individual patients [. . .] integrating individual clinical expertise with the best available external clinical evidence from systematic research’ (Sackett et al. 1996). This chapter reviews the main human rights principles applicable in this area, the existing and potential good practices which can contribute to advance disabled children’s right to participate in health guidelines development and the barriers impacting on such a right. First, the chapter provides an overview of relevant principles affirmed in the CRC, the CRPD, and the General Comments by the respective Committees. It then turns to empirical studies and child participation projects, mainly from the Netherlands and the UK, which provide particularly good insights into the achievements and challenges emerging in practice. Finally, in the conclusion, it combines the human rights perspective with empirical and experiential insights, identifying necessary steps in order to promote the participation of disabled children in health guidelines development.

The Right of Disabled Children to Participate in Guidelines Development The Right of the Child and of the Disabled Person to Decide on Healthcare Matters Both the CRC and the CRPD place considerable emphasis on the right to be in control of choices regarding one’s life, including health. In this regard, central provisions are Article 12 CRC and Article 12 CRPD. Article 12(1) CRC affirms that ‘States Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely’, giving to them ‘due weight in accordance with the age and maturity of the child’. In this way, it identifies children as active parties in, rather than passive objects of, decisionmaking (Freeman 1994). General Comment No. 12 by the CRC Committee stresses that, under this provision, it is not sufficient that a child is simply listened to but requires that their views are ‘seriously considered’ (CRC Committee 2009, p. 11). According to a widely agreed-upon interpretation which seems to be supported by the Committee, this would imply that when it appears that the child has a sufficient level of maturity, their view must be determinative of the decision or the part of it for which the child is mature enough (Lundy et al. 2019; CRC Committee 2009). 228

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In order to be considered capable under the Convention, a child does not need to be fully competent or have extensive knowledge of the matter (CRC Committee 2009). The age of the child cannot be in itself a ground to discard their opinions, and indeed, the capacity of the child to express their views has to be presumed until proven otherwise. Moreover, parents and other people surrounding the child have a duty to create an empowering environment and put in place the necessary means of support to maximise the child’s decision-making abilities (CRC Committee 2016; CRC Committee 2005; CRC Committee 2009). Article 12 CRPD focuses on the right to legal capacity of disabled people, that is, the right to hold rights and exercise them through valid legal acts. Article 12(2) affirms that ‘States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life’, while Article 12(3) states that ‘State Parties should provide access by persons with disabilities to the support they may require in exercising their legal capacity’. According to the CRPD Committee, these provisions imply that, under the CRPD, ‘perceived or actual deficits in mental capacity must not be used as a justification for denying legal capacity’ (CRPD Committee 2014, pp. 3–4). Therefore, if, because of their impairment, a person struggles to make decisions, rather than transferring their legal capacity to a guardian or deputy who chooses for them (substituted decision-making), they should be helped to directly make decisions and overcome the obstacles preventing them from doing so (supported decision-making) (CRPD Committee 2014). The Committee proposes a particularly radical interpretation of Article 12 CRPD, arguing that under the Convention, it is never possible to deprive an individual of their legal capacity on the basis of a mental (in)capacity assessment, and that all decisions should be made on the basis of the person’s will and preferences (Flynn and Arstein-Kerslake 2014). This interpretation is contested in relation to the possibility of using substituted and best interests decision-making in case of severe impairments or serious danger for the individual (Dawson 2015). Nonetheless, it is clear that, under the CRPD, the default model should be based on promoting the self-determination of disabled people through support. Also relevant with regards to the right to be involved in healthcare decisionmaking is Article 25 of the CRPD. Article 25(1) paragraph (d) specifies that states parties must guarantee that care is administered to disabled people ‘on the basis of free and informed consent’, putting at the centre the rights, dignity, autonomy, and needs of the person. This provision has to be interpreted in conjunction with Article 12 CRPD as demanding that the right to decide on their care and medical treatment is recognised also to individuals who do not possess a level of mental capacity which satisfies existing capacity to consent tests (Dhanda 2007; Weller 2018). Therefore, the CRPD Committee states that, under Articles 12 and 25 CRPD, forced treatment in the area of psychiatry is banned also in case of crises (CRPD Committee 2014). Also, this statement has been subject to controversy in relation to cases of severe mental illness (Dawson 2015). Nonetheless, it is safe to say that, under the CRPD, healthcare professionals are, in general, required to refrain from any form of paternalism and help the disabled person in expressing their will on healthcare matters. 229

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Article 24 of the CRC, on the right to health of children, is less explicit in this sense, as it just refers to the ‘right of the child to the enjoyment of the highest attainable standard of health’. However, we know from paragraph 8 of General Comment No. 14 by the UN Committee on Economic, Social, and Cultural Rights (ESCR Committe 2003, p. 2) that such a high standard presupposes ‘the right to be free from interference, such as the right to be free from torture, non-consensual medical treatment and experimentation’. In General Comment No. 15, the CRC Committee (2013, p. 8) recognises that the right to health of a child includes ‘the right to control one’s health and body’. In light of Articles 5 and 18 of the CRC, parents remain responsible for guiding the child in healthcare decisions and for choosing for them if their children are not capable of doing so. However, also in this case, the provisions on the right to health need to be read in combination with those on the child’s right to be heard (Tobin 2018). This is confirmed by General Comment No. 4 on adolescents’ health, which states that, within the decision-making process, ‘adolescents need to have the chance to express their views freely and their views should be given due weight, in accordance with article 12 of the Convention’ so that ‘if the adolescent is of sufficient maturity, informed consent shall be obtained from the adolescent her/ himself ’ (CRC Committee 2003, p. 28).

A Right of Disabled Children to Participate in Guideline Development? Various norms of the CRPD and statements by the CRPD Committee seem to make it clear that the previous principles apply also to disabled children (Campoy Cervera 2017). Considerandum (r) of the CRPD Preamble and Article 7(1) CRPD explicitly refer to the entitlement of disabled children to the full enjoyment of human rights and fundamental freedoms on an equal basis with other children. Article 7(3) of the CRPD repeats almost word by word the provisions of Article 12(1) of the CRC referring them to disabled children. In this regard, the CRPD Committee stresses that the Convention provisions regarding the right to legal capacity apply also to children, stating that ‘to comply with article 12 [CRPD], States parties must examine their laws to ensure that the will and preferences of children with disabilities are respected on an equal basis with other children’ (CRPD Committee 2014, p. 9). In addition, Article 2(1) of the CRC mandates that the rights set forth in the Convention on the Rights of the Child have to be recognised for all children without discrimination, including on the basis of disability. Furthermore, in its General Comment on the right of children to be heard, the CRC Committee refers specifically to disabled children, stating that ‘children with disabilities should be equipped with, and enabled to use, any mode of communication necessary to facilitate the expression of their views’ (CRC Committee 2009, p. 9). What is less clear is whether the principles reviewed so far also apply to the specific case of involvement in guidelines development. Indeed, both the CRC and CRPD Committees seem to focus rather on micro-level decisions regarding healthcare. In relation to Article 12 CRC, this emerges not only from the fact that the 230

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CRC Committee generally talks about involvement of ‘the child’ but also from the reference to ‘age and maturity’. Indeed, in the context of guidelines development, in which decisions are made by putting together the views of a group of children, the reference would have to be to the mean age or to (more complex) criteria to ascertain what weight people of different ages and maturity levels would have within the group. Also, Article 25 (1) paragraph (d) CRPD concentrates on the ‘individualistic’ level of informed consent. Similarly, General Comment No. 1 by the CRPD Committee refers continuously to acts such as marriage, consent to medical treatment, consent to intimate relationships, signing up for contracts or mortgages, which the person typically enters as an individual, and never mentions the word ‘guidelines’ (CRPD Committee 2014). In light of this, one might doubt whether the right of disabled children to be involved in healthcare decision-making applies also to provisions and guidelines on the general conduct of medical procedures. The question arises because this level differs from that of individual healthcare decision-making in a number of important aspects. First, it is a highly protocolised process which, on top of taking into consideration patients’ needs, mandates to deal with technical-medical questions under the principles of evidence-based medicine (EBM) (Bensing 2000). In addition, developing general guidelines which apply to a plurality of individuals and future situations presupposes a level of knowledge, maturity, and insight which exceeds those required for individual healthcare decisions. In reality, looking at the CRC, the CRPD, and the interpretive documents of their Committees, one finds various excerpts which appear to recognise the right of the disabled child to participate in healthcare guidelines development. To begin with, Considerandum (o) of the CRPD Preamble emphasises that ‘persons with disabilities should have the opportunity to be actively involved in decision-making processes about policies and programmes, including those directly concerning them’. Article 4(3) of the CRPD makes it clear that this right to be involved applies to children as well, stating that when developing legislation and policies, ‘States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities’. There is no reason to argue that these principles should not apply to the field of healthcare decision-making. On the contrary, it should be noted that Article 25(3) of the CRPD, in advocating for healthcare services which respect the needs and will of disabled people, refers to the importance of ‘ethical standards for public and private health care’. This might be seen as a sign that the micro and macro levels of healthcare decision-making are not considered separate by the Convention when it comes to promoting the self-determination of disabled people. General Comment No. 15 by the CRC Committee, on the right to health, affirms that Article 12 CRC applies also to decision-making processes regarding what services are needed, the way in which they should be delivered and made accessible, and the quality and attitudes of healthcare professionals delivering them. In addition, in the Committee’s General Comment No. 12, disabled children are expressly identified as one of the categories who have the ‘right to be heard as applied to a group of children’ (CRC Committee 2009, p. 5). Furthermore, soon after having recognised 231

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that the rights set forth in Article 12 of the CRC apply also to ‘children’s involvement in the development of health policy and services’, it stresses the necessity to provide them ‘with information about proposed treatments and their effects and outcomes, including in formats appropriate and accessible to children with disabilities’ (CRC Committee 2009, p. 20), thus implicitly including disabled children among those who need to be part of the decision-making processes mentioned previoously. In light of the considerations expressed so far, it is clear that CRC and CRPD principles regarding the right of children and disabled people to be involved in decisions regarding their health apply also to the field of health guidelines development for disabled children. However, doubts arise on how this right plays out in practice.

Disabled Children and Guidelines Development in Practice Why Is Guideline Development a Special Case of Participation? Barriers to Participation As already pointed out, health guidelines development is a highly protocolised process, guided by the strength of evidence regarding a specific aspect of diagnosis or treatment and aiming to set up the standard of care applicable to a number of patients and situations, thus giving precedence to generalisable types of considerations (Bensing 2000). Due to its rigid methodological basis, guideline development often has limited possibilities to cater to the needs of specific groups, such as disabled children (Schalkers et al. 2017). Higher weight tends to be given to data coming from randomised controlled trials (RCTs) over the outcomes of a single case study, experiential evidence, or expert opinion, following a hierarchy established by EBM protocols (Oxford Centre for Evidence-Based Medicine [OECBM] 2011). However, due to the practical and regulatory barriers to disabled children’s involvement in research (e.g. strict capacity to consent regulations, unwillingness of children/parents/guardians, risk adversity), often RCTs data from this cohort are not available (Bloomfield 2015). This can lead to guidelines based on RCTs which do not include sub-groups, such as disabled children. The process of health guidelines development is also complicated by the fact that it often includes a wide range of professional stakeholders. This leads to complex discussions often entailing the heavy use of medical terminology. Therefore, children and parents tend to be seen as passive research participants who can be a source of valuable information but are not equal partners in the guidelines’ development process. The different barriers to child participation in guidelines development have been investigated in depth by Schalkers et al. (2017) in a study based on interviews, a survey, and focus groups with guidelines developers. They summarise them as follows: 1. Guideline developers are not used to it; it is not in their way of working, and clear requirements to give children a voice in the process of guideline development do not exist. 232

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2. Due to the hierarchical healthcare system, the medical knowledge of professionals is considered as superior to the experiential knowledge of patients, especially if they are children. 3. Involving children in guideline development is difficult. The question is whether children are able and willing to contribute to the complicated and scientific matter of guideline development. These barriers can be felt even more strongly in the case of disabled children, as prejudice and ‘I know best’ attitudes can be exacerbated by the awareness of a child’s impairment. Moreover, one should remember that the most commonly used tools for guideline development, AGREE and GRADE, are not designed to take the role of children into account (Brouwers et al. 2010; Guyatt et al. 2011). Both of these tools are designed to assist experts with evidence weighting and bias minimisation by the guided process of evidence revision. This process is usually quite technical and requires expert knowledge and understanding of the basics of scientific inquiry, which by design excludes child participation. A recent systematic review stated that only 5% of all considered studies involving research agenda setting for paediatric care included children as participants. Of these, 2 or 3 included disabled children, but this category was represented by a maximum of 3 participants per study, when other categories of stakeholders, such as healthcare professionals or parents, were represented by minimum 10–20 participants per study (Odgers et al. 2018).

Children or Parents: Who Should Participate in Guideline Development? In light of what has just been pointed out, it is clear how, when in research and public discourse we talk about disabled children’s participation in guideline development, we actually refer to their parents’ participation on their behalf. From the point of view of guideline developers, adult participation is easier to organise, and there is an assumption that parents’ views and opinions match with those of their children. In addition, there are strong beliefs that even relatively older disabled children do not have sufficient cognitive abilities to follow the complicated conversations guidelines development entails. Finally, in the eyes of many, disabled children constitute a vulnerable group that needs to be shielded and protected from the hardships of life. Thus, parents are seen as easy substitutes. Such assumptions, significantly widespread among guideline developers (Schalkers et al. 2017), are deeply troubling, as they deny disabled children a real possibility to influence decisions which can impact their future experiences with the healthcare system. In addition, they are clearly in contrast with the principles affirmed by the CRC, the CRPD, and the respective General Comments. This does not necessarily mean that parents’ participation should stop but, rather, that it should be a tool to support the child and enable them to articulate their will as fully as possible, rather than being a way of keeping them out of the debate. 233

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Why Should Participation of Disabled Children in Guidelines Development Become a Norm, and Which Guidelines Should They Contribute To? Promising examples of disabled children participation come from a particular area of guideline development: agenda-setting. One of the most prominent recent initiatives in this area is a Dutch project bringing together patients with juvenile idiopathic arthritis (JIA), carers, and physicians (Schoemaker et al. 2018). The project, coordinated by the Dutch Juvenile Arthritis Association (DJAA), involved a number of patients’ and professionals’ associations and paediatric hospital departments throughout the country. On the one hand, the project focused on the co-creation of a research agenda for JIA, but on the other hand, they clearly indicate that they also aimed to inspire participants and researchers to increase the levels of participation by paediatric patients in such activities. This was achieved through meetings with children with JIA, in which, through discussions with the researchers, they were invited to give their input in defining a children-led priority list for future research and development in the field of JIA. This allowed them to gather elements to tailor future research plans to the wishes and needs of their main target group. Another interesting example comes from Scotland, where young people with learning difficulties and their parents have been included in the agenda-setting activities regarding the ways to improve the lives of individuals with childhood-onset conditions impairing learning processes (Lim et al. 2019). The project, involving the University of Edinburgh, the Scottish charity the Salvesen Mindroom Centre, and various partners in the NHS, education services, and the third sector, consisted of a survey conducted through a disability-friendly questionnaire, in which questions were formulated in a simpler language, and taking into account the particular communication preferences of children with learning difficulties. In this way, it provides a good example of how disabled children can be involved in guidelines development through surveys, providing a model questionnaire that can be used on future occasions. However, both these examples include children with a certain impairment in agenda-setting discussions regarding their specific condition. Things get more complicated when the guidelines being developed are not about a single condition. An example comes from a recent project conducted in the Netherlands, in collaboration with the independent organisation TNO and the Nederlandse Centrum Jeugdgezondheidszorg (NCJ), focusing on the development of primary paediatric care guidelines on posture and movement (Syurina et al. 2021). These guidelines deal with issues such as prevention of bad posture and muscle conditions by assessing factors such as sitting posture during homework, screen time, daily physical activity patterns. The difficulties with the integration of child participation in the development of these guidelines were rooted in their preventive nature, meaning, that there was no defined experiential group to ask for input and experience. The broad range of issues and conditions tackled by the guidelines also contributed to the complexity in organising participation activities. 234

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In light of this complexity, the decision was made to include a broad range of children and thus organise the activities through various primary and secondary schools. The argument was that this would lead to a more representative group of participants. However, within the sample, no disability disclosure was requested; thus, we are not aware if disabled children participated in the activities. Their input into the guideline could have shed some light on the applicability of the recommendations and screenings for a broader range of children. For instance, the contribution of this category of children would have made the recommendations on physical activity contained in the guidelines more inclusive, by providing insights into the preferences of disabled children to engage (or not to engage) in specific preventative activities and the barriers which they may face in this area. The examples cited so far show that participation of disabled children is important and beneficial on the development of both guidelines relating to their own condition and of guidelines not directly linked to their impairment. Indeed, participation of this group of children is of great value to ensure a wide applicability of the guidelines and for disabled children themselves, as it is an empowering mechanism which helps them grow, take up responsibilities, and gain in experience and self-confidence. Therefore, the CRC, CRPD, and their respective Committees are right to strongly advocate for the need that disabled children are always involved in macro-level healthcare choices. Of course, participation in practice often plays out quite differently from what is envisaged in some statements by the CRC and CRPD Committees. Indeed, in this context, the opinions of participating children are always filtered by guideline developers. However, this is not necessarily a bad thing, as in doing this, professionals fulfil their role to provide technical advice to stakeholders and avoid mistakes which might infringe rather than promote the right to health of disabled children. The important thing is that, especially, guideline developers really have an open attitude towards children, believing in the importance to include them as ‘experts by experience’ and having always clear in their mind the distinction between clinical-technical issues, on which they can have the final word, and wider existential questions, on which they have to respect the opinion of their stakeholders. In summary, there is the need to make sure that the adult is a component, but not necessarily (in fact, desirably not) the determining component. Here is where things sometimes go wrong, and these are the aspects on which one should concentrate so that disabled children participation really happens in practice. Indeed, it is particularly difficult to delimit the role of health practitioners and make space for a meaningful contribution from disabled children. Children and young people bring their own different perspective (Mitchell et al. 2019), so their contribution may facially clash with the principles of EBM, which in itself is already not very amenable to integrate patients’ experiential knowledge in the discourse (van de Bovenkamp and Zuiderent‐Jerak 2015). For this reason, what is needed is also a revision of the epistemic setting currently characterising health guideline development, recognising that its strong focus on clinical evidence is problematic (Bensing 2000). In this sense, it is crucial that guideline developers are reflective practitioners (Schön 1983) whose conduct is informed by mutual learning with children and their 235

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families (rather than enforced top-down external requirements). It is also important that ethical guidelines set clear limits to practitioners’ action and power. Unfortunately, there is still a lack of guidelines on the ethics of guidelines development with children. In addition, many existing ethical guidelines in this area still appear to be characterised by the traditional approach, which mainly focuses on capacity assessments rather than involvement in the decision-making process. Nonetheless, valuable provisions in this sense can be found, for example, in the guide on children involvement by NIHR INVOLVE (2019) and by the UK National Children Bureau’s Guidelines for Research with Children and Young People (Shaw, Brady and Davey 2011), which stress how professionals have to compensate the natural power imbalance between adult and child and guarantee that adults empower rather than limit the child to make their voice heard.

Directions for Participation Implementation With regard to the structure of guidelines development processes, it varies from country to country, and sometimes even from setting to setting. However, in all cases, the five broad steps outlined by the World Health Organisation should be followed. These steps are guidelines scoping and agenda setting, formulating the main questions, synthesising the evidence, grading the evidence, and formulating recommendations (WHO 2019). Currently, most initiatives in the area of child participation concentrate on the first two stages. In this regard, some interesting examples of child participation can be found in relation to the development of guidelines for paediatric chronic pain, rheumatic musculoskeletal disease, and paediatric idiopathic arthritis (Birnie et al. 2019; McDonagh et al. 2018; Verwoerd et al. 2020). Another common area in which child participation initiatives are taking place is bottleneck analysis (UNICEF 2012), which is the identification of barriers to effective health service delivery and their causes, which is very close to the priority-setting phase and often overlaps with it (Gibson, Mistry and Wright 2018; Koller et al. 2010). Nonetheless, there are also few examples of child participation in the knowledge triangulation, recommendation formulation, and even guideline implementation (Coon et al. 2016; Crowe et al. 2016). These examples show how there is good scope for child participation in all stages of the guidelines development process. However, they all present a common shortcoming: they mostly focus on one or two time-points for participation and do not organise continuous participatory activities throughout the whole process. Ongoing consultation of children and their caregivers would be far preferable, as it would benefit the continuity of the participatory process, help build a trusting child–guideline developer relationship, and better empower the child. Continuous rather than timelimited participatory activities would be even more preferable, at least for certain categories of disabled children, like those with psycho-social disabilities, who might need more time to ‘warm up’ to the process or with whom certain guideline developers might struggle more to understand their perspective and way of communicating. Regarding the methods to organise participation activities, there is no unified golden standard, but some practical examples of child participation can serve as an 236

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inspiration. Among the most commonly used methods of participation are online surveys, individual interviews, and focus groups. However, when working with disabled children, one should be creative, in order to make participation not only useful for the guideline development process but also fun, engaging, and empowering for the child. A promising example in this regard is the Handbook on Child Participation prepared and published by the Dutch organisation Kind en Ziekenhuis (Dedding, Willekens and Schalkers 2012). This book includes a variety of activities that can be used to enhance child participation, such as walls of wishes, photo voice, and letters to the CEO. Such mechanisms can be particularly beneficial for disabled children, especially those with a psycho-social disability, as they make good use of non-verbal communication channels, play techniques, and fictional situations to explain complex issues to children in a more direct way (Plan International 2019; Wass and Safari 2020). In our already-mentioned project on posture and movement, creative and engaging ways to enhance children’s participation were created, which can be used also with disabled children. Among the activities used, there was a role-play, through which, through the re-enactment of a typical visit to the doctor, children were accompanied in pitching ideas for guidelines and awareness-raising materials to increase their level of physical activity. On this occasion, it was noted that, in order for these activities to work, they need to be adapted to the interests and age of the children. For instance, in a group of students that follow an IT-related high school, the activity could be linked to the creation of a website or a game, while younger children enjoy more ‘analogical’ forms of play, like puppet theatre.

Conditions for Successful Participation of Disabled Children in Guidelines Development Based on literature as well as our research experience, several conditions for successful participation can be identified, which should be taken in mind by guidelines developers. 1. Open your mind to the possibility and importance of child participation in guidelines development. Many guideline developers are not prepared to involve children and might have resistances against participation activities which can be seen as complex, difficult to organise, and not useful. Therefore, there is the need to convince healthcare professionals and experts of the benefits of respecting the right of disabled children to be involved in health guidelines development. In this regard, projects such as those we have cited in the earlier sections, which promote a more intensive and systematic use of participatory mechanisms, should be encouraged and scaled up (Schalkers et al. 2017). 2. Make participation accessible. Some practitioners still seem to think that participation can be realised just by sending the guidelines working documents to the child’s parents or guardian for comments. However, this form of participation may be challenging even for an adult. In order to get the best out of participation 237

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3.

4.

5.

6.

activities with disabled children, it is important to have a set of questions formulated in a way which is understandable to the disabled child, also with the help of visual aids or play activities. Make participation meaningful. There is nothing worse for a child than to partake in activities, invest time and effort to think along with researchers and professionals, and then see their input ignored. It is thus crucial that the outcome of participatory activities is adequately reported and that developers are transparent about what input comes from the children involved. Ideally, in all guidelines, there should be a section on the integration of participatory knowledge. In addition, we need principles on how the input by disabled children has to be integrated with other types of knowledge considered in the development of a certain set of guidelines and on how to deal with conflicts between the experiential knowledge provided by disabled children and material coming from scientific literature. Indeed, this is often one of the main reasons that children inputs are discarded in guidelines development processes (van de Bovenkamp and Zuiderent‐Jerak 2015). Participation of disabled children should be built on long-term, continuous contact between developers and children. This is important for two reasons. The first is that an ongoing, long-term relationship would help children open up about their experiences and feel more empowered. The second reason is that long-term, continuous participation can provide researchers and guideline developers with a possibility to gain deeper insights regarding the experiential knowledge of children, and especially of those who, due to their impairment, might communicate in unconventional ways. Participation should be empowering for the child. However, the term empowerment can mean different things to different children. For example, some of the children involved in our projects considered it empowering to have the possibility to speak their mind and share opinions with adults, while for others, empowerment was more linked to receiving new knowledge. There is a need for more research about the precise dimensions of empowerment for disabled children in relation to participation in guidelines development. It would also be important that, during participatory activities, mechanisms are always in place, through which disabled children can discuss their values and expectations towards the project. Participation activities for disabled children should be tailored to the specific situation. To begin with, participatory activities should take into account the nature of the questions posed to the children and choose participation methods accordingly. For instance, if the activity is just about double-checking certain assumptions, participation can simply happen through a questionnaire. However, if the topic is more complex, it might be necessary to go for more engaging methods, such as focus groups, personal interviews, or long-term at-home activities (i.e. diary writing). In addition, when organising participatory activities with disabled children, it is important to take into account the specific barriers they face in connection with their disability and adapt the activity so that it is, at the same time, challenging, empowering, and doable for them. A way of doing this can be using painting, sculpting, or role-play/acting activities. A number of studies and projects 238

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highlight the importance that healthcare professionals and guidelines developers know the needs of children involved in macro-level healthcare decisions and act in a way which is in line with them (Schoemaker et al. 2018; Mitchell et al. 2019). Within the same project referred to earlier, focus groups conducted with older adolescents, the open relationship with participants, and the constant reflection on their needs and expectations allowed us to also touch upon questions relating to societal and individual responsibilities in a context of democratic participation through guidelines development, which also stimulated the adolescents’ interest in the proposed activities (Syurina et al. 2021). Following a similar approach, older disabled children could also be invited to have a deeper conversation on their role in society and on disability rights issues which involve them as citizens. 7. Last but not the least, introduction of participation activities within the guideline development process needs to be made possible by adaptations to the timeline of the guideline development and the requested budget. During our projects, but also in other publications on the topic, it was noted that guideline developers are often reluctant to integrate a strong participatory component due to the fact that the organisation of activities and analysis of children’s input often require considerable additional time and resources (Schalkers et al. 2017; van de Bovenkamp and Zuiderent‐Jerak 2015). Therefore, there is the need for more flexibility in this regard also on behalf of donors and organisations operating in this area.

Conclusion From the analysis conducted in this chapter, it emerges that disabled children have a fundamental right to participate in the development of health guidelines recognised by international human rights law. However, this right is often not respected in practice. The main barriers to the practical realisation of such a right seem to come essentially from the attitude of healthcare practitioners and guideline developers. Another barrier is lack of flexibility in terms of timing and funding arrangements to accommodate extensive participation activities. These attitudinal and structural barriers often lead guideline developers to overestimate or not put enough effort towards overcoming the practical difficulties which undoubtedly arise when having to involve disabled children in something as complex as guidelines development. However, a number of projects have demonstrated that such difficulties can generally be attenuated. Such initiatives show how, by adopting more engaging and creative participatory methods (e.g. play activities, painting/sculpting workshops, drama/roleplay), a consultation system based on ongoing communication, and an open attitude towards participating children, it is possible to enable them to give a pretty valuable contribution which can be beneficial both in terms of their own empowerment and personal growth and in terms of quality of the guidelines. For this reason, it is crucial that such initiatives are more widely known among healthcare practitioners and that steps are taken (e.g. through awareness-raising campaigns) to convince a growing number of them of the importance of disabled children engagement. In addition, it would be helpful to have a clearer and more explicit 239

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statement, enshrined in official human rights documents, such as a Comment by the CRC or the CRPD Committee, with regard to the right of disabled children to participate in guidelines development processes. This would help promote such a right without having to put in place a complex, hermeneutic process which can be easy to follow for a lawyer but not for a medical professional. For an analysis of the normative content of Articles 12 and 24 CRC, we recommend the relevant sections in the 2019 commentary, edited by Tobin, The UN Convention on the Rights of the Child: a Commentary (Oxford University Press). With regard to the CRPD we recommend the chapters on Articles 7, 12, and 24 in the two commentaries, both entitled The UN Convention on the Rights of Persons with Disabilities: A Commentary edited by Bantekas, Stein, and Anastasiou (Oxford University Press, 2018) and by Della Fina, Cera, and Palmisano (Springer, 2017). General Comments of the CRC and CRPD Committees, together with other valuable material, can be found respectively in www.ohchr.org/en/treaty-bodies/crc and www.ohchr.org/en/treaty-bodies/crpd. The websites of organisations such as Save the Children (https://resourcecentre. savethechildren.net/) and Children in Scotland (https://childreninscotland.org.uk/) contain resource centres with toolkits and informative material on children participation which can be relevant also in relation to guidelines development. Interestings are also the principles emerging from ethical guidelines such as the guide on children involvement by NIHR INVOLVE (www.invo.org.uk/wp-content/uploads/2019/10/Involving-children-and-young-people-as-advisors-in-research.pdf.), the UK National Children Bureau’s Guidelines for Research with Children and Young People (https://info.lse. ac.uk/staff/divisions/research-and innovation/research/Assets/Documents/PDF/NCBguidelinesCYP-2011.pdf) and the 2015 report on children and clinical research by the Nuffield Council on Bioethics (www.nuffieldbioethics.org/publications/children-andclinical-research), all characterised by a strong focus on children’s empowerment.

Acknowledgements We would like to thank ZonMW for the funding provided to project #732000205, ‘Kinderen, jongeren en ouders op betekenisvolle wijze betrekken bij JGZ-richtlijnen’, on which this chapter is partly based. We would also like to thank Dr Carina Pittens and Ms. Simone Harmsen, co-researchers within this project, and Ms Tara White, for her contribution to the data collection process.

References Bensing, J. 2000. Bridging the gap: The separate worlds of evidence-based medicine and patient-centered medicine. Patient Education and Counseling 39(1), pp. 17–25. Birnie, K. A., Dib, K., Ouellette, C., Dib, M. A., Nelson, K., Pahtayken, D., Lamontagne, C. 2019. Partnering for pain: A priority setting partnership to identify patient-oriented research priorities for pediatric chronic pain in Canada. CMAJ Open 7(4), pp. E654-E664.

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Disabled Children in Health Guidelines Development Bloomfield, F. H. 2015. The challenges of research participation by children. Pediatric Research 78(1), pp. 109–110. Brouwers, M. C., Kho, Browman, G. P., Burgers, J. S., Cluzeau F., Feder, G., Fervers, B., Zitzelsberger, L. 2010. AGREE II: Advancing guideline development, reporting and evaluation in health care. Canadian Medical Association Journal 182(1488–2329 (Electronic)), pp. 839–842. Campoy Cervera, I. 2017. Ideas for the construction of a human rights model for children, with or without disabilities. In O’Mahoney C and Quinn, G (eds.), Disability law and policy: An analysis of the UN Convention. Dublin: Clarus Press, pp. 17–32. Carman, K. L., Dardess, P., Maurer, M., Sofaer, S., Adams, K., Bechtel, C. and Sweeney, J. 2013. Patient and family engagement: A framework for understanding the elements and developing interventions and policies. Health Affairs 32(2), pp. 223–231. Caron-Flinterman, J. F., Broerse, J. E. and Bunders, J. F. 2005. The experiential knowledge of patients: A new resource for biomedical research? Social Science & Medicine 60(11), pp. 2575–2584. Convention on the Rights of Persons with Disabilities and Optional Protocol. 2006. [online] [Accessed on 20 April 2022] Available from: www.un.org/disabilities/documents/convention/convoptprot-e.pdf. Convention on the Rights of the Child. 1989. [online] [Accessed on 20 April 2022] Available from: www.ohchr.org/en/professionalinterest/pages/crc.aspx Coon, J. T., Gwernan‐Jones, R., Moore, D., Richardson, M., Shotton, C., Pritchard, W., Ford, T. 2016. End‐user involvement in a systematic review of quantitative and qualitative research of non‐pharmacological interventions for attention deficit hyperactivity disorder delivered in school settings: reflections on the impacts and challenges. Health Expectations 19(5), pp. 1084–1097. CRC Committee. 2003. General comment no. 4 (2003): Adolescent health and development in the context of the convention on the Rights of the Child. Geneva: United Nations. CRC Committee. 2005. UN committee on the rights of the child (CRC), General comment no. 7 (2005): Implementing child rights in early childhood. Geneva: United Nations. CRC Committee. 2009. General comment no. 12: The right of the child to be heard. Geneva: United Nations. CRC Committee. 2016. General Comment No. 20 (2016) on the Implementation of the rights of the child during adolescence. Geneva: United Nations. Crowe, S., Knowles, R., Wray, J., Tregay, J., Ridout, D. A., Utley, M., Brown, K. L. 2016. Identifying improvements to complex pathways: Evidence synthesis and stakeholder engagement in infant congenital heart disease. BMJ open 6(6). http://dx.doi.org/10.1136/ bmjopen-2015-010363 CRPD Committee. 2014. General comment no. 1. Article 12: Equal recognition before the law, Geneva: United Nations. Dawson, J. 2015. A realistic approach to assessing mental health laws’ Compliance with the UNCRPD. International Journal of Law and Psychiatry 40, pp. 70–79. Dedding, C. W. M. 2009. Delen in macht en onmacht: Kindparticipatie in de (alledaagse) diabeteszorg. Universiteit van Amsterdam [Host]. Dedding, D. W. M., Willekens, T. and Schalkers, I. 2012. Kinderparticipatie in het ziekenhuis. Een praktische introductie. Utrecht: Stichting Kind & Ziekenhuis. Dhanda, A. 2007. Legal capacity in the disability rights convention: Stranglehold of the past or lodestar for the future. Syracuse Journal of International Law and Commerce 34(2), pp. 429–462. ESCR Committee. 2003. General comment no. 14 (2000), The right to the highest attainable standard of health (article 12 of the International Covenant on Economic, Social and Cultural Rights). [online] [Accessed on 20 April 2022] Available from: https://digitallibrary.un.org/ record/425041?ln=en Flynn, E. and Arstein-Kerslake, A. 2014. The support model of legal capacity: Fact, fiction or fantasy? Berkeley Journal of International Law 32(1), pp. 124–143.

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Kevin De Sabbata and Elena Syurina Freeman, M. 1994. Whither children: Protection, participation, autonomy? Manitoba Law Journal 22(3), pp. 307–327. Gibson, B. E., Mistry, B. and Wright, F. V. 2018. Development of child and family-centered engagement guidelines for clinical administration of the challenge to measure advanced gross motor skills: A qualitative study. Physical & Occupational Therapy in Pediatrics 38(4), pp. 417–426. Guyatt, G., Oxman A. D., Akl, E. A., Kunz, R., Vist, G., Brozek, J., Norris, S., Schünemann, H. J. 2011. GRADE guidelines: 1. Introduction-GRADE evidence profiles and summary of findings tables. Journal of Clinical Epidemiology 64(1878–5921 (Electronic)), pp. 383–394. Koller, D., Nicholas, D., Gearing, R. and Kalfa, O. 2010. Paediatric pandemic planning: children’s perspectives and recommendations. Health & Social Care in the Community 18(4), pp. 369–377. Lim, A. K., Rhodes, S., Cowan, K. and O’Hare, A. 2019. Joint production of research priorities to improve the lives of those with childhood onset conditions that impair learning: The james lind alliance priority setting partnership for ‘learning difficulties’. BMJ Open 9(10), https//10.1136/bmjopen-2018–028780. Lundy, L., Tobin, J. and Parkes, A. 2019. Art. 12. The right to respect for the views of the child In J. Tobin (ed.), The UN convention on the rights of the child: A commentary. Oxford: Oxford University Press, pp. 397–432. McCafferty, P. 2017. Implementing article 12 of the United Nations convention on the rights of the child in child protection decision-making: A critical analysis of the challenges and opportunities for social work. Child Care in Practice 23(4), pp. 327–341. McDonagh, J., Lunt, L., Cresswell, K., et al. 2018. Research priority setting by young people with rheumatic musculoskeletal disease. Archives of disease in childhood [online] [Accessed on 20 April 2022] Available from: https://adc-bmj-com.vu-nl.idm.oclc.org/content/ archdischild/early/2018/07/14/archdischild-2018-315735.full.pdf?casa_token=_65um_ kjM00AAAAA:14JKNbl7J_PZ69Jr_35f_dDuZG2p_UpJxYgIIVoHFMzBudE0irrE7ppifB7RLLyK-CqzrTteMlg. Mitchell, S. J., Slowther, A. M., Coad, J., Akhtar, S., Hyde, E., Khan, D., Dale, J. 2019. Ethics and patient and public involvement with children and young people. Archives of Disease in Childhood 104(4), pp. 195–200. NIHR INVOLVE. 2019. Involving children and young people as advisors in research: Top tips and essential key issues for researchers. [online] [Accessed on 20 April 2022] Available from: www.invo.org.uk/wp-content/uploads/2019/10/Involving-children-and-youngpeople-as-advisors-in-research.pdf. Odgers, H. L., Tong, A., Lopez-Vargas, P., Davidson, A., Jaffe, A., McKenzie, A., Crowe, S. 2018. Research priority setting in childhood chronic disease: A systematic review. Archives of Disease in Childhood 103(10), pp. 942–951. Oxford Centre for Evidence-Based Medicine [OECBM]. 2011. Levels of evidence [online] [Accessed on 20 April 2022] Available from: www.cebm.ox.ac.uk/resources/ levels-of-evidence/ocebm-levels-of-evidence Plan International. 2019. Guidelines for consulting with children and young people with disabilities. [online] [Accessed on 20 April 2022] Available from: www.lshtm.ac.uk/sites/ default/files/2019-06/Consulting-Children-Young-People-Disabilities.pdf Sackett, D. L., Rosenberg W. M. C., Muir Gray, J. M., Haynes R. B. and Richardson, W. S. 1996. Evidence based medicine: What it is and what it isn’t. BMJ 312(7023), pp. 71–72. Schalkers, I., Enthoven, C., Bunders, J. and Dedding, C. 2017. When to invest in clinical guidelines for children? A practice oriented tool to facilitate decision-making. Journal of Evaluation in Clinical Practice 23(1), pp. 79–88. Schoemaker, C. G., Armbrust, W., Swart, J. F., Vastert, S. J., Van Loosdregt, J., Verwoerd, A., Versluis, E. 2018. Dutch juvenile idiopathic arthritis patients, carers and clinicians create a research agenda together following the James Lind Alliance method: A study protocol. Pediatric Rheumatology 16(1), pp. 1–5.

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Disabled Children in Health Guidelines Development Schön, D. A. 1983. The reflective practitioner. How professionals think in action. New York: Basic Books. Shaw C., Brady L. M. and Davey, C. 2011. NCB guidelines for research with children and young people. [online] [Accessed on 20 April 2022] Available from: https://info.lse.ac.uk/staff/ divisions/research-and-innovation/research/Assets/Documents/PDF/NCB-guidelines CYP-2011.pdf Syurina, E., Pittens, C. and Harmsen, S. 2021. Kinderen, jongeren en ouders op betekenisvolle wijze betrekken bij JGZ-richtlijnen: de co-creatie van een inspirerende roadmap [ZonMW, project number: 732000205]. [online] [Accessed on 20 April 2022] Available from: www.zonmw.nl/nl/onderzoek-resultaten/jeugd/programmas/project-detail/ richtlijnen-jeugdgezondheidszorg-2013-2018/kinderen-jongeren-en-ouders-op-betekenisvollewijze-betrekken-bij-jgz-richtlijnen-de-co-creatie-va/ Tobin, J. 2018. Art. 24. The right to health. In J. Tobin (ed.), The UN convention on the rights of the child: A commentary. Oxford: Oxford University Press, pp. 902–969. UNICEF. 2005. Every child’s right to be heard. A resource guide on the UN committee on the rights of the child. General comment no.12. [online] [Accessed on 20 April 2022] Available from: www.unicef.org/files/Every_Childs_Right_to_be_Heard.pdf UNICEF. 2012. The guidebook: Strengthening district management capacity for planning, implementation and monitoring for results with equity. [online] [Accessed on 20 April 2022] Available from: www.childhealthtaskforce.org/sites/default/files/2019-06/ DIVA%20Guidebook_Strengthening%20District%20Management%20for%20Results%20 with%20Equity_(UNICEF,%20MSH,%202012).pdf van de Bovenkamp, H. M. and Zuiderent-Jerak, T. 2015. An empirical study of patient participation in guideline development: Exploring the potential for articulating patient knowledge in evidence-based epistemic settings. Health Expectations 18(5), pp. 942–955. Verwoerd, A., Armbrust, W., Cowan, K., van den Berg, L., de Boer, J., Bookelman, S., Dedding, C. 2020. Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis. Pediatric Rheumatology 19(52), https:// doi.org/10.1186/s12969-021-00540-2 Waldschmidt, A., Karačić, A., Sturm, A. and Dins, T. 2015. Nothing about us without us disability rights activism in European Countries—A comparative analysis. Moving the Social 53, pp. 103–138. Wass, S. and Safari, M. C. 2020. Photovoice—Towards engaging and empowering people with intellectual disabilities in innovation. Life 10(11), https://doi.org/10.3390/life10110272 Weller, P. 2018. Art. 25. Health. In I. Bantekas, M. A. Stein and D. Astasiou (eds.), The UN convention on the rights of persons with disabilities: A commentary. Oxford: Oxford University Press, pp. 705–732. WHO. 1997. Guidelines in healthcare practice. Report on a WHO meeting. [online] [Accessed on 20 April 2022] Available from: fromwww.euro.who.int/__data/assets/pdf_ file/0011/118379/E53492.pdf WHO. 2019. Enhancing WHO’s standard guideline development methods. Sexual and reproductive health. [online] [Accessed on 20 April 2022] Available from: www.who.int/ reproductivehealth/guideline-development-methods/en/

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14 THE RIGHT TO AN ‘ACTIVE VOICE’ WITHOUT WORDS Co-Creating Knowledge in Special Schools with Art Research Together Karian Schuitema The UN Convention on the Rights of the Child (1989) assures under Article 12 that if ‘capable of forming his or her own views’, the child has the right to ‘express those views freely in all matters affecting the child’. Additionally, Article 13 states that ‘the child shall have the right to freedom of expression’. This includes ‘the freedom to seek, receive and impart information and ideas of all kinds’ and asserts that this could be done ‘orally, in writing or in print, in the form of art, or through any other media of the child’s choice’. Since its publication, numerous projects have focused on the child’s participation and their right to having an active ‘voice’ (Thomas 2007). For example, children are asked to share their views on issues to local councils and are encouraged to have their own advocacy groups within schools. Children are also regularly invited to participate within research projects to share their knowledge about a range of relevant subjects (see Bancroft, Fawcett and Hay 2008; Bucknall 2012; Kellett 2005; Fargas-Malet et al. 2010). However, there is a noted shortage of the inclusion of the disabled child in such projects (see Curran 2013; Franklin and Sloper 2006). Children who do not fully express themselves using spoken or written language are particularly underrepresented in this field. They require adults to think about how their practice can become more accessible and more respectful of alternative ways of expression. The need for disability- and age-appropriate assistance to ensure children realise all their rights and fundamental freedoms (including the right to express their views freely) on an equal basis with other children is also protected under Article 7 of the Convention on the Rights of Persons with Disabilities (2006). This chapter will discuss the importance of the fulfilment of this right and will look at how experimental and artistic research on the theme of inspiration engaged children to express themselves while challenging traditional research methods and narratives on disability. 244

DOI: 10.4324/9781003056737-19

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Figure 14.1

Bernardo’s puppet.

The chapter draws on the work by Art Research Together (ART!), an initiative established in 2016 with the aim of inviting children, as well as parents, carers, and teachers, to collaborate with artists and academics to use the arts to practise the child’s right to expression. It presents three vignettes to illuminate how children who use minimal—or no—language to express themselves took part in a research project, funded by the Leverhulme Trust, and collaborated with artists, teaching staff, and myself (as the principal investigator). They provide narrative accounts of how children used the arts to explore, create, and express themselves, but also the difficulties of an experimental artistic research process. The vignettes are framed within a discussion of the aims and working methods of the project. The chapter argues that artistic expression can be established when the child is offered space to follow their interests but also when receiving the right support to access activities. The ability and willingness of adults to give children this space and support in education, research, and artistic activities are influenced by narratives around disability, agency, and capability. Moreover, traditional research methods favouring written and verbal contributions often fail to engage with those children who have physical and visual forms of expression. The chapter suggests that, by centralising the child’s inspiration and active engagement while drawing on the arts, research can become more inclusive and make space for embodied knowledge and alternative expression, thus ensuring all young views are considered and taken seriously.

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Researching Inspiration and Agency Developing an understanding of how research itself can become more inclusive and how disabled children can be offered better access to the arts is receiving much attention in academic (see Schwartz, et al. 2020) and cultural fields (see Arts Council England 2020). However, it is not often that disabled children are invited to share their experiences and views on these subjects or offered opportunities to influence or challenge practice through participation and collaboration. The child’s knowledge and active agency is regularly dismissed, and where children are represented, their ideas, creations, and opinions are largely absent and replaced by those of adults (parents, teachers, researchers, and those in the art industry). The way in which disabled people are represented but not actively included is also present in the narrative around ‘inspiration’. Disabled people are, for example, presented as inspirational in media, film, or advertising, for the ‘consumption’ of non-disabled people and a motivation for them to achieve (Young 2012). This objectification can be linked to wider perceptions of disability in which the medical model focuses on fixing, overcoming, or curing impairments, and the charity model promotes helping those in ‘need’ (Retief and Letšosa 2018). Maintaining these models can compromise the goal of recognising and removing those barriers in society that prevent equal opportunities (Barnes et al. 2002), suggesting that it is disabled individuals who need to show great strength in overcoming their impairments. The prevalence of the medical and charity models can also be recognised in how art projects often use therapeutic or educational benefits for disabled children to attract funding, audiences, and participants (see Goodley and Runswick-Cole 2011). This is instead of highlighting the child’s right to cultural participation and how artistic expression can help children share their views and perspectives. Research generally focuses on medical needs and interventions into the behaviour of disabled children (Runswick-Cole et al. 2018, p. xxi), and children diagnosed as having developmental and/or learning disabilities are often the subject of these inquiries. When research does follow social or related models, creativity and the arts are regularly seen as valuable research methods to explore issues relevant to children and young people’s lives. Although these studies are invaluable to advocate for disabled children, they do not often focus on the artistic expression of the young participants but rather gather data relevant to the topics set by the researcher. This means that non-verbal expressions that are more abstract in nature and those physical expressions that arise from performance and engagement with art—which are valuable and meaningful to the child but not necessarily relevant to the topic—are not regularly included. Although children may not always have the skills to communicate topics of interests because they are non-verbal, it is important to explore ways in which studies can incorporate what children may like to share and let them direct research as much as possible.

ART! ART! intends to intervene into traditional research, artistic practice, and the day-today care of disabled children by finding ways in which research can invite children to practise their right to expression. This is not to improve the child’s communication, 246

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behaviour, or art skills but to examine how the child’s environment can support their communication, accommodate their behaviour, and encourage access and involvement in the arts. The ART! project discussed in this chapter did not use the theme of inspiration to fix the activities and workshops, as these were shaped by the artists and children themselves. Nor was it used with the expectation that a definite answer can be formed through the research activities. Instead, this theme was used to avoid a particular adult agenda. Asking children what inspires them, and actively including them in art activities, shifted the focus from children being inspirational to children being inspired themselves. The project asked the young collaborators: What do you like so much that it makes you want to tell stories, dance, make puppets, music, and films? We wanted to understand when children feel that they want to do something and can do it, have a particular strong feeling or reaction, as well as have a good idea for a book, film, and so on (this follows the Cambridge Dictionary’s definition of inspiration (2021)). Finally, the project featured the art produced in creative workshops on an accessible website and in film to add to the representation of disabled children in a way that is relevant and accessible for children themselves. The working method was based on knowledge co-creation (or co-production) methodologies that aim to bring together different stakeholders to create knowledge relevant to both practice and academia. As Bell and Pahl (2017, p. 106) highlight, these methodologies ‘tease out forms of knowledge extant within communities that are often overlooked or undervalued by more traditional forms of academic research, including embodied, emotional and tacit ways of knowing and representing the world’. Using arts-based methods for data collection and dissemination techniques (see Coemans and Hannes 2017), the project aimed to ensure children as stakeholders contributed to the development of knowledge and also had access to the outcomes. The project particularly drew on the core ideas of performative research. The objective of performative research is to add to quantitative and qualitative methodological distinctions by proposing a third paradigm of research that avoids the emphasis on numeric or written outcomes and does not only want to ‘place practice within the research process, but to lead research through practice’ (Haseman 2006, p. 100). This paradigm ‘holds that practice is the principal research activity—rather than only the practice of performance—and sees the material outcomes of practice as all-important representations of research findings in their own right’ (Haseman 2006, p. 103). As such, the art that the children created was the most important data and outcome. Additional questionnaires and interviews with parents, carers, and teaching staff aided contextualisation. Presentations and written outputs, like this chapter and discussions relating to practice that are available on the project’s website, supplement the children’s art as a research outcome. Moreover, the art that the children created was approached as performative acts that ‘produce effects in the world’ (Bolt 2009, p. 2). It is in this sense that the project combined research, art, and disability activism. To initiate this research process, two special schools selected students for a series of artistic workshops. Each school was offered three music workshops developed and led by David ‘Stickman’ Higgins, and three puppetry workshops created and delivered by Amelia De-Felice. Schools could also select sensory story workshops designed 247

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and delivered by myself. These workshops spanned two days, during which a sensory story was created for each participating class. Each school created their own film as an important research outcome, and children were asked to respond to this film in drawings. The animator responsible for creating the final films, Diwas Bisht, ran stop-motion animation workshops with two groups of students at one of the schools. I delivered these workshops to another group of students at the other school. The schools distributed and collected the relevant information letters and parental permission slips. It was important that the children were invited to workshops that matched their likes and dislikes. For example, children who often feel uncomfortable in music sessions would not be selected for these workshops, and children who liked technical and detailed work would be invited to the animation sessions. Ethics permission was granted by Keele University after submitting a detailed proposal, outlining aspects such as research methods, ensuring participant anonymity and data storage. An important aspect of this process considered how children, who may have very limited use and understanding of language, could be involved in the consent process. Parental consent was obtained, but children were also asked to provide ongoing assent in alternative ways (see Pluquailec 2013, p. 217) and asked to indicate if they would like to join and, importantly, withdraw from the activities. To encourage understanding, symbols (such as stay and go/happy and sad) and social stories (see Gray 2021) were used. Teaching staff were also asked to closely observe the children in order to encourage and support them to withdraw from activities if they appeared unhappy or distressed. Despite extensive ethics planning, it was necessary to continuously review practice and adapt accordingly.

Research Dilemmas: Special Schools and Children’s Images There were various issues that arose from the research, one of which was that research took place in special education. ART!, as an initiative to promote disability rights, does not support the practice of placing children in segregated spaces. The importance of quality inclusive education for disabled children—and for the wider society—has been affirmed for many years (Ballard 1999). The reality is, however, that when mainstream schools fail to meet children’s educational needs, the child is often placed in a special school, usually outside their local community. Special schools may have trained staff and specialist facilities; however, being in a segregated space has consequences for the disabled child. With less connection to local communities, the needs and expressions of disabled children are more easily (dis)missed. Moreover, when parents and carers are not able to fund or accommodate activities outside the school, such as trips to art clubs, museums, or theatres, children are further excluded. As such, advocacy work in special schools is important but risks ‘normalising’ segregated spaces that should belong to the past. This is why ART! hopes to build on this research and open more inclusive spaces using the established networks to encourage participation. Another issue concerned pictures of the children within the research outputs. Some of the parents/carers were uncomfortable with the idea of their child being 248

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captured on camera, while other parents/carers felt it important that their child was ‘seen’, contributing to an increased representation of disabled children. This follows a wider debate, particularly held on social media, about the distribution of images without informed assent of the children featured. Content of children suffering emotional distress is especially criticised for being exploitative and harmful. In this debate, it is often disabled people that are in opposition to parents who want to share their experience of caring for a disabled child. Additionally, there is a group of parents who want to raise awareness through the images they share or contradict the negative perceptions associated with having a disabled child (see chapter by Patterson and McGoldrick in this volume). In light of these concerns, and acknowledging opposing views, it was important to look at the obligations and limitations of the project. While obtaining the child’s assent for actively participating in a workshop was deemed achievable, ensuring that every child assented to their image being used outside their immediate environment (in the research findings) was considered too problematic. A compromise was made to feature the children’s art, but not pictures of the children. The decision not to show pictures or footage of the children interacting during the practical research posed a challenge when sharing the work beyond the direct participants and particularly within academic environments. Although the ART! website shared the children’s art and some of the other research outcomes—and the films created during the project were featured at several conferences and seminars— the (embodied) knowledge that the children shared while creating their art was more difficult to transfer. This chapter, therefore, uses short vignettes to describe the practical research stage. While the aim is to highlight the child’s engagement, agency, and embodied expression, such observations also risk reducing the active voice, thus presenting the child as a studied subject. Moreover, the discussion of the adult’s interaction to highlight the importance of providing appropriate access may be interpreted as ‘voice giving’ in the sense that the agency (or achievement) lies with the adult. The vignettes aim to show how the child already has a voice and can express themselves in various ways. The research process highlights how adults can learn to create more accessible spaces and ‘listen’.

Vignettes The vignettes provide examples of how the project aimed to make space for all children to experiment using the arts, to share their views and express themselves. Nathan, Lilly, and Bernardo were selected because they used no, or minimal, language, but also because their interactions highlight the broad spectrum of engagement that took place during the project. There were a further 113 children who also engaged with the project in very diverse and individual ways. I have chosen to discuss my own interaction using the first person, allowing me to highlight what my interpretations were and how I responded to these as a practitioner and researcher. Consequently, it is also useful to highlight that I identify as disabled, as this informs both my practice and research. 249

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The children are introduced in each vignette, with some brief information learned during initial meetings as well as creative workshops. The focus of the study was not connected to specific diagnoses or medical needs. However, to provide an accurate individual picture, it is necessary to mention that the diagnoses were very different: Bernardo is autistic, Lilly has epilepsy and a global developmental delay, and Nathan is deaf-blind and has profound and multiple learning disabilities.

Lilly Lilly is an 11-year-old girl who communicates effectively with limited speech. She uses some words, Makaton signing, and symbols to make herself clear. If you interpret her incorrectly, she makes this clear by saying ‘no’ and repeating herself until she is satisfied with your understanding. Lilly is invited to participate in the animation workshops. In the second workshop session, we use pictures, symbols, Makaton signs, and most importantly, modelling to recap the different steps of the animation process. Lilly watches the explanation intently, and although she listens to what her fellow classmates say, she does not communicate herself. This is until I mention to one of the other children that he has ‘definitely got it’. Excitedly she calls out: ‘Me too!’ I continue explaining that in this session we are going to create paper butterflies for our park, which various students—including Lilly—have indicated as their place of inspiration. Lilly now responds loudly with ‘yes’ and with a big smile to various questions. When the explanations are finished, she quickly moves to her table to decorate her butterfly. She is finished with her decorations equally fast, and even though three separate adults ask her if she would prefer to add some more detail, she is steadfast that her own minimal approach is right. Lilly seems excited to have her turn recording the animation of her butterfly, which goes smoothly and is finished in a couple of minutes. When Lilly is done, she starts shouting ‘Yaaaaaay’, pumping her fists in the air with a big smile on her face. She walks with big steps through the classroom, after which she embraces the adults present. Her celebrations have lasted at least four times longer than her animation work, and when she returns to her classroom seat, she is still smiling. Lilly’s joy of mastering a new skill could be linked to her pleasing the adults in an education setting because she has learned something new. However, it may also be rooted in her own sense of agency. Not only did she create the butterfly she wanted (despite adult interference); she also found independence in her film-making. Lilly seems inspired to take on the animation process, feeling she is able to complete the various steps. She also appears to be inspired emotionally after taking part while sharing the joy with the people around her. The animated story was completely constructed by those elements children indicated as inspirational. In an earlier session, Lilly had shared that she really liked the cartoon character Peppa Pig with its distinctive snorting noise (which Lilly can mimic perfectly). Consequently, a pig, which was also animated by Lilly, had a prominent role in the final film. It was found that starting with things that children had indicated as inspirational also inspired them to engage with the art activities and express their ideas. 250

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Figure 14.2

Still of ‘our story’ showing Lilly animating.

Figure 14.3 Lilly has drawn a pig on her feedback form, which was her favourite part of the film.

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Nathan Nathan is a 12-year-old boy who uses a wheelchair and is often asleep in his classroom. He does not communicate using words. Instead, the teaching staff focus on his facial expressions and small movements he may make to communicate his needs. Nathan and his classmates have been invited to create a sensory story. In the first session, the story of guinea pigs looking for children’s inspiration is created by offering the children two sensory objects and incorporating preferences. The teaching staff suggest that I offer Nathan a hand warmer, which represents the guinea pigs walking through the desert, and a box of reusable ice cubes, which represents walking through the snow. The objects are placed near Nathan’s hands, and we wait until his fingers touch the sensory objects. This process is repeated several times. The teacher watches Nathan’s face intently, suggesting that there is a clearer response to the warmth. Having only recently met Nathan, I find this much harder to determine. I can see small changes in facial muscles and slight eye movements when a different sensory stimulus is placed near his hand. Nathan falls asleep before the other children start to use various art resources to make their individual art pages, which are subsequently added to the book. The teacher suggests that Nathan really likes a little dog his granddad brings to his house. He also likes feeling shapes and different textures. Using this knowledge, the staff create his page, and when Nathan wakes up towards the end of the session, they help him feel the shapes and textures of the paper. When I return two days later to tell the story, the teaching staff also help pick a sensory item that Nathan seems to like. This is a cat toy which has the size, weight,

Figure 14.4

Nathan’s personal page for the sensory story was created with help from the teaching staff and his classmate.

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and soft faux fur similar to that of a real cat and a mechanism that simulates breathing. When the story turns to Nathan’s page, I present the hand warmer, and he seems to observe the warmth it radiates. I tell the class that the guinea pigs walk through the desert to meet Nathan’s favourite little dog (showing the page) and his sensory toy. After all the children have touched the toy, the cat is placed in Nathan’s lap by the teaching assistant. Again, he responds to the stimuli with slight facial muscle movements and the pupils in his eyes shifting slightly (mainly upwards). The cat stays in Nathan’s lap while I tell the rest of the story. The teaching staff also help introduce other elements that seem suitable for Nathan, such as the fur of a lion puppet and the smell of flowers. Nathan responds in a similar way, and the teaching staff comment that he seems both comfortable and interested to participate. Nathan’s interaction was strongly guided, supported, and led by adults. It is possible to argue that Nathan had little agency within these interactions. He did not appear upset or distressed during the workshop but did not actively participate. During the first session, he indirectly withdrew from engagement by falling asleep. Although the opinions of the teaching staff who work with Nathan are valuable, it is possible that they projected their own expectations onto him. As such, there is no evidence that he was inspired by the activities, as he did not have a strong emotional reaction and was not seen to take an active role or to express a new idea. That said, we cannot determine that Nathan’s response to different stimuli was insignificant. He may have been interested and/or enjoyed the interaction, as the staff suggested. Nathan’s ‘inspiration’ (his likes), such as the family dog, became a part of the storyline in the book created for the classroom and was included in the outcomes of the project (the book, website, and film). In this way, his contribution was essential to the project. Nathan also has the right to express himself, and even when this is difficult to achieve, adults should continue to explore how activities can be adapted to ensure he is included.

Bernardo Bernardo is a 9-year-old boy. He has been invited to make a puppet out of newspapers and then to perform with it at a special puppet disco. Bernardo can write his name, copy words, and speak some words, but he does not express himself using spoken language. Instead, he makes himself clear through using his body (gestures and positioning), facial expressions, and vocal sounds. Bernardo appears to be very happy to participate in the workshop: he joins in immediately, follows instructions without extra support, has no problems in using the materials, and is one of the first to finish, decorating his puppet with a white cape, a red feather on its head, and orange star stickers on its chest. On completion, Bernardo brings the puppet to life, making it jump, fly, and do handstands. Bernardo’s table is directly in front of the camera used to record the session for research purposes. He appears to be quite familiar with the technology, as he soon flips the screen to see what the camera is recording and starts to zoom in and out. As the adults in the classroom are busy supporting other children, Bernardo uses the equipment to film his newly created puppet. I find three different pieces of footage when the data is examined. First, Bernardo appears with his puppet on-screen. The camera 253

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then zooms into Bernardo’s eye, accompanied with a high-pitched ‘whuuuuuump’ that he makes, at which point he switches the camera off. In the next instance, Bernardo is interrupted by a teaching assistant, who moves him away from the equipment. Finally, Bernardo can be heard singing ‘duh duh duh’, and we just see his puppet on the screen. It is blurry at first, but after a couple of seconds, the puppet’s smile comes into focus, at which point Bernardo says ‘cheese’. I hear my own voice repeating the word cheese whilst laughing. I then say ‘finished’ as I reset the camera. Bernardo did not need significant support to create his puppet, and by having a degree of freedom from adult interference, he was inspired to take his exploration further using the research equipment to build his knowledge of filming. Although he was interrupted by other classroom dynamics, the agency that led him to explore the camera settings was also acknowledged in the final film. I subsequently asked Bernardo to recreate the puppet looking through the camera in the stop-motion animation workshop in which he also took part. When I return with the film to gather feedback, Bernardo jumps to his feet, and with a big smile, he copies some of the animations with his body. When the film is finished, he says ‘awesome’ and plays the film for a second time. Bernardo’s interaction and positive feedback illustrate how the activity inspired him to follow his interests. It also highlights the importance of ensuring that the activities encapsulated the different ways children express themselves, and how spoken language should not be a barrier to artistic experimentation. Gillett-Swan and Sargeant (2018, p. 125) argue that in ‘order to fully realise the child’s right to freedom of opinion and expression, more recognition of the multiple ways in which children can communicate effectively is needed’. In the vignettes, we read how Lilly, Bernardo, and Nathan use different methods of expression. Lilly’s loud and physical celebrations after mastering a new skill contrast Nathan’s minimal gestures and facial expressions, which are carefully interpreted by staff who know him well. Bernardo highlights what he wants and needs through his actions, taking the camera equipment to record himself with his puppet.

Alternative Expressions and the Power of Research Researchers such as Tisdall (2012) identify historic and current similarities in the way children and disabled people, as groups, are marginalised, institutionalised, and excluded. She points out that children and people with learning difficulties have experienced exclusion as citizens and contributors because society positions them as ‘insufficiently competent and rational’ to participate (Tisdall 2012, p. 183). The adults’ view of children’s capability can have significant implication for the realisation of their rights in terms of expression and communication (Gillett-Swan and Sargeant 2018). During the research project, some teaching staff, parents, and academics voiced the opinion that children, especially those with profound and multiple disabilities, were not able to participate in research or express their views as they did not have the mental capability of forming their own views or the ability to express these due to a lack of language. There is an awareness in the literature that communication difficulties potentially prevent children from practising their right to expression, particularly in educational settings (Bercow 2008; Roulstone and McLeod 2011). This is especially the 254

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Figure 14.5

Bernardo’s drawing made after seeing the film. One of the figures in the top corner box (drawn in green) is likely to be his puppet, with a feather on its head. The figure drawn on the right (drawn in red with a purple circle) has a similar haircut as the workshop leader.

case if ‘the only accepted means of communication and participation are limited to “traditional” written and spoken means’ (Gillett-Swan and Sargeant 2018, p. 122). Similarly, access to research participation may be restricted due to communication difficulties and language barriers (Harris and Roberts 2003). Tesfaye et al. (2019, p. 1886) highlight in their systematic review of studies involving disabled children that few ‘captured the voices of youth with communication impairments or minimal verbal abilities’. They also found that several studies used ‘parent proxies to speak for children’ or ‘excluded children and youth who were “minimally verbal”’ (p. 1886). To engage these young people as underrepresented stakeholder groups, Tesfaye et al. (2019) argue that researchers should follow a flexible approach, which can evolve during the collaboration with young participants, families, and experts particularly by using tools based on individual communication strengths. In the perception of capability, language and knowledge are connected (Christie and Martin 2007). The pedagogical focus on how people learn through language is arguably reflected in how ‘lettered people’ are positioned in society. Similarly, research is deeply embedded in discourses of knowledge and power, and behind the adherence to exclusively traditional modes of research and participation lies a much wider debate about knowledge and those who have the authority to produce it (Fox 255

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2015, p. 324). Research can be damaging to those objectified through science. For example, the discussion of epistemic violence focuses on how mainstream research omits ‘concepts/conceptions of othered peoples’ and how damage is done by ‘interpreting observed group differences to be caused by inherent inferiorities of othered peoples’ (Held 2020). Appadurai (2006, p. 167) writes about the democratisation of the right to research, arguing that research should be regarded not as ‘a high-end, technical activity’ but as a ‘specialized name for a generalized capacity, the capacity to make disciplined inquiries into those things we need to know, but do not know yet’. Reframing research as an act relevant and accessible to everyone and not just reserved for those at research institutions can highlight the experiences and views of people who are traditionally ‘othered’, ensuring society cannot continue to ignore the views and needs of minorities. Transforming research from something that focuses on ‘others’ to a process that is carried out by—and belongs to—the participants also shifts the ‘ownership’ of knowledge and thus the power assigned to this. Making research and outcomes more democratic can be regarded as an act of activism and resistance against the dominant narratives regarding disability. Nevertheless, there is a risk that this democratisation challenge is underestimated and that methods such as knowledge co-creation or performative studies are employed uncritically and presented without issues. The aforementioned difficulties of breaking away from traditional modes, particularly the difficulties around language, require further exploration of research itself and those alternative methods such as artistic inquiry.

Art Research to Inspire Art projects designed for children often highlight the potential of creative engagement to facilitate the child’s knowledge development. For example, Bancroft et al.’s (2008) book Researching Children Researching the World describes how an arts-based action research project based on the principles of Reggio Emilia gathered evidence about children’s life-wide creative capacities. The German artist and academic Sibylle Peters established the Theatre of Research in Hamburg in 2002, where children, artists, scholars, and scientists collaborate as researchers. Peters (2018, p. 98) regards research as ‘something simple’, which is done from an early age because we ‘want something. . . . We want to learn something, experience something, have something, achieve something, and so we try’. In this way, children ‘start a series of tests and their research begins’ (2018, p. 98). Peters’s method of regarding research and scientific inquiry as something that can be ultimately described as creative play has the potential to pursue the democratisation of research. If research can be reframed as something that can be simple, accessible, and fun for the participants, it can counter the ‘epistemological violence’ that can be associated with being subject to a study that focuses on your perceived inferior differences. In addition, the medium of art enables alternative expression and communication. When not using verbal language, children might be able to show their feelings through movement or dance, by drawing a picture to express a particular mood, make a puppet express feelings, or make music to be heard. It is important to 256

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acknowledge that not every child wants to or can participate in every form of art, but this is where creativity also enables flexibility. Activities can be adapted, and it is possible to offer different forms of art so the child can select which one to take part in. This is where the subject of inspiration shapes the research around children’s individual interests and needs. In response to the question of what is inspirational, we found that nature, swimming pools, food, and coloured patterns and textures were among the most reoccurring answers. However, the most important finding was that using an open question which could be answered in many different and, most importantly, nonverbal ways encouraged children with a wide range of capabilities to express themselves. When asking children to share their views on, for example, the care they receive or how they feel their rights are protected, some groups will be excluded because these questions are not accessible. Approaching the children’s views in terms of what they found inspirational meant starting with a question children could relate to, and it further inspired them to join the process of exploring, testing, and succeeding through art. The vignettes highlight how adults have a clear role in facilitating and supporting the children’s exploration and expression and how this role is explored and developed through the practical research process. The adults mainly focused on how to inspire children to take part in the activities, to ensure that they felt involved, engaged, and able to take part. This was also a process of success and error: The fact that Nathan fell asleep during the first workshop could be due to my failure, through lack of knowledge of how to engage with him. By using a familiar sensory toy, Nathan has more sensory input during the second session and stays alert. Bernardo could have his own filming equipment during the workshop, thus not having to be interrupted when using the university’s camera and exploring more freely. Elsewhere, after failing to give clear instructions during the first stop-motion animation workshop, the second session was more successful in making the skills accessible, supporting Lilly to collaborate with confidence. The ability to recognise mistakes and change course accordingly in real time, as the research is ongoing, is integral to an experimental research method. Nevertheless, this must be done in such a way that children are not impacted in a negative way. The process of ethics permission is therefore fundamental in considering the potential risks, as are measures—such as decompression places, thorough plans for when children show distress and anxiety and clear information for children, parents/carers, and teaching staff—that can help ensure ‘failure’ takes place in a safe space. Submitting a detailed plan of research is important, but choosing an open subject, such as inspiration, and inviting children to have an active role in developing activities foster flexibility. Ultimately, the lines between safety and creative freedom, as well as child agency and adult support, need to be closely guarded.

Conclusion This chapter argued that adults need to find a balance between offering support, making research activities accessible, as well as giving children space so they can practise their agency and develop and apply their knowledge. Although research is 257

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able to explore this balance and help adults develop better practice through the application of new experimental approaches, it is also important to ask critical questions about the application of methodology and how knowledge is produced. To ensure that all children, including those who express themselves without language, are able to participate and have the opportunity to practise their right to share their views,

Figure 14.6

Bernardo has painted a picture of a tree in the park for his personal page of the sensory story. It is one of the places he really likes.

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it is necessary to explore alternative approaches to research that not only discuss and propose new or novel methodology but also acknowledge hierarchies of power underpinning the academic research process itself. The question of who is able to pursue knowledge, attain it, and benefit from doing so, in other words, is framed by the power to define what knowledge is. The active role of the child in knowledge co-production through the arts, and the ways in which their engagement challenges traditional perceptions of their lives, is the most important aspect of this exploration. It is not possible to offer a direct answer to the question ‘What is inspirational?’ because the answers necessarily differed to such a large extent. However, it was found that asking what the child found inspirational and utilising things they liked in the activities provided a catalyst for artistic exploration and expression. To realise the child’s right to expression, then, it is important for adults to recognise the child’s agency and their alternative ‘voice’.

Art Research Together (ART!) is a research initiative established in response to disabled children being regularly excluded from cultural, artistic, and research opportunities in which they can share their opinions, knowledge, and experiences. ART! was founded in 2016 as part of a Leverhulme fellowship during which two practical research projects engaged with four Special Educational Needs (SEN) schools. The first project focused on humour and laughter and asked the young collaborators ‘what is funny?’ The second project asked the young collaborators ‘what inspires you?’ or ‘what do you like so much that it makes you want to tell stories, dance, make puppets, music, and films?’ One hundred and fifteen children aged 4 to 18, from two different SEN schools were invited to collaborate in workshops that explored different creative art activities. To decide what these activities should be, initial questionnaires for children (using images) as well as for parents and teachers, asked about the child’s areas of interests. Sharing sessions, which created space for children to interact with the researcher using play and drawing, were organised when this was more fitting to the child’s manner of communication. Children were also asked to share their thoughts and opinions after the workshops and in response to a film that was created using the children’s artistic contributions. As practical and artistic research, the most important elements were the workshops and the creative outcomes. The creative outcomes were shared on www. artresearchtogether.uk with the aim that both children and adults could have access to these research findings.

References Appadurai, A. 2006. The right to research. Globalisation, Societies and Education 4(2), pp. 167–177. Arts Council England. Diversity. 2020. [online] [Accessed on 5 January 2020] Available from: www.artscouncil.org.uk/developing-creativity-and-culture/diversity Ballard, K. ed. 1999. Inclusive education: International voices on disability and justice. Abingdon: Taylor and Francis.

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Karian Schuitema Bancroft, S., Fawcett, M. and Hay P. eds. 2008. Researching children researching the world: 5x5x5=creativity. London: Institute of Education Press. Barnes, C., Oliver, M. and Barton L. eds. 2002. Disability studies today. Cambridge: Polity Press. Bell, D. M. and Pahl, K. 2017. Co-production: Towards a utopian approach. International Journal of Social Research Methodology 21(1), pp. 105–117. Bercow, J. 2008. The bercow report: A review of services for children and young people (0–19) with speech, language and communication needs. London: Department for Children, Schools and Families. Bolt, B. 2009. A performative paradigm for the creative arts? Working Papers in Art and Design. [online] [Accessed on 8 January 2021] Available from: www.herts.ac.uk/__data/assets/ pdf_file/0015/12417/WPIAAD_vol5_bolt.pdf Bucknall, S. 2012. Children as researchers in primary schools. New York: Routledge. Cambridge Dictionary. Inspire. 2021 [online] [Accessed on 5 September 2021] Available from: https://dictionary.cambridge.org/dictionary/english/inspire Christie, F. and Martin J. R. eds. 2007. Language, knowledge and pedagogy: Functional linguistic and sociological perspectives. London: Continuum. Coemans, S. and Hannes, K. 2017. Researchers under the spell of the arts: Two decades of using arts-based methods in community-based inquiry with vulnerable populations. Educational Research Review 22, pp. 34–49. Convention on the Rights of Persons with Disabilities and Optional Protocol. 2006. [online] [Accessed on 5 September 2021] Available from: www.un.org/disabilities/documents/convention/convoptprot-e.pdf. Convention on the Rights of the Child. 1989. [online] [Accessed on 5 November 2006] Available from: www.ohchr.org/en/professionalinterest/pages/crc.aspx Curran, T. 2013. Disabled children’s childhood studies: Alternative relations and forms of authority? In T. Curran and K. Runswick-Cole (eds.), Disabled children’s childhood studies: Alternative approaches in a global context. Basingstoke: Palgrave Macmillan, pp. 121–135. Fargas-Malet, M., McSherry, D., Larkin, E. and Robinson, C. 2010. Research with children: methodological issues and innovative techniques. Journal of Early Childhood 8(2), pp. 175–192 Fox, M. 2015. Embodied methodologies, participation, and the art of research. Social and Personality Psychology Compass 9(7), pp. 321–332. Franklin, A. and Sloper, P. 2006. Participation of disabled children and young people in decision making within social services departments: A survey of current and recent activities in England. British Journal of Social Work 36(5), pp. 723–41. Gillett-Swan, J. and Sargeant, J. 2018. Assuring children’s human right to freedom of opinion and expression in education. International Journal of Speech-Language Pathology 20(1), pp. 120–127. Goodley, D and Runswick-Cole, K. 2011. Something in the air? Creativity, culture and community. Research in Drama Education 16(1), pp. 75–91. Gray, C. Carol Gray Social Stories. 2021. [online] [Accessed on 8 January 2021] Available from: https://carolgraysocialstories.com/social-stories/what-is-it/ Harris, J. and Roberts, K. 2003. Challenging barriers to participation in qualitative research: Involving disabled refugees. International Journal of Qualitative Methods 2(2), pp. 14–22. Haseman, B. A. 2006. Manifesto for performative research. Media International Australia Incorporating Culture & Policy. 118(1), pp. 98–106. Held, B. S. 2020. Epistemic violence in psychological science: Can knowledge of from and for the (othered) people solve the problem? Theory & Psychology 30(3), pp. 349–370. Kellett, M. 2005. How to develop children as researchers. London: Paul Chapman Publishing. Peters, S. 2018. A pleace for transgenerational research in live art. Performance Research 23(1), pp. 98–101.

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The Right to an ‘Active Voice’ without Words Pluquailec, J. 2013. Thinking and doing consent and advocacy in disabled children’s childhood studies research. In T. Curran and K. Runswick-Cole (eds.), Disabled children’s childhood studies: Alternative approaches in a global context. Basingstoke: Palgrave Macmillan, pp. 121–135. Retief, M. and Letšosa, R. 2018. Models of disability: A brief overview. HTS Teologiese Studies/Theological Studies 74(1), pp. 1–8. Roulstone, S. and McLeod, S. 2011. Listening to children and young people with speech, language and communication needs. Guildford: J & R Press. Runswick-Cole, K. Curran, T. and Liddiard, K. 2018. The Palgrave handbook of disabled children’s childhood studies. Basingstoke: Palgrave Macmillan UK. Schwartz, A. E., Kramer, J. M., Cohn, E. S. and McDonald, K. E. 2020. That felt like real engagement: Fostering and maintaining inclusive research collaborations with individuals with intellectual disability. Qualitative Health Research 30(2), pp. 236–249. Tesfaye, R., Courchesne, V., Yusuf, A., Savion-Lemieux, T., Singh, I., Shikako-Thomas, K., Mirenda, P., Waddell, C., Smith, I. M., Nicholas, D., Szatmari, P., Bennett, T., Duku, E., Georgiades S., Kerns, C., Vaillancourt, T., Zaidman-Zait, A., Zwaigenbaum, L. and Elsabbagh, M. 2019. Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities. Autism 23(8), pp. 1882–1896. Thomas, N. 2007. Towards a theory of children’s participation. The International Journal of Children’s Rights 15(2), pp. 199–218. Tisdall, K. E. M. 2012. The Challenge And Challenging of Childhood Studies? Learning from: disability studies and research with disabled children. Children & Society 26, pp. 181–191. Young, S. 2012. We’re not here for your inspiration. [online] [Accessed on 4 June 2020] Available from: www.abc.net.au/news/2012-07-03/young-inspiration-porn/4107006

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Vignette Four MEET LIAM

Hello, my name is Liam, and I am currently 14 years of age. I would describe myself as an academically gifted student who has a large friend group, and I am incredibly cool, obviously! I live in an area which has lots of communal areas, and I like where I live because I have a lot of friends around where I live, and I have a lot of good shops. I live in a big house with my family, and I would describe my family as a good, nice family. I have a mum and a big brother and sister. My favourite place to be in my house is in my bedroom, on my own. I like sitting in my bed in the dark and playing games on my laptop and listening to YouTube. I am in year 9, and I like going to school because it teaches me about future experiences, and it is fun to see my friends. I like maths, cooking, science, history, and geography. I don’t like French, because it’s hard and boring. It took me a while to get used to secondary school because I kept getting lost and I had to get used to the noise and the smells in the canteen. But it’s OK now. I like to get the same thing for lunch every day, and a cookie for my snack. I prefer being at school than on school holiday, because I like routine and I like to know what’s happening. I get stressed when I don’t know what is going to happen. If I am prepared for change, then it is easier for me, because I know what is going to happen. When I am not at school, I like going to the park with my friends and playing games and stuff on the computer, because it’s enjoyable and easy and I can talk to my friends. A good friend is someone who is loyal, trusts you, and is there for you when times are tough, and I am a good friend because I’m loyal, trustworthy, and funny, sort of, maybe. My best friend Michael has been my friend since year 1, and we go to the same secondary school now. I have autism but feel like adults don’t treat me differently and they still listen to me, and they listen to my opinions and stuff. Sometimes it can be hard to talk to them, especially when I am upset and I can’t talk. At school, I have DOI: 10.4324/9781003056737-20

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a card so I can leave the classroom when I want to, and sometimes I use it to go to the toilet because I think I need a break from learning. It makes me happy that my teachers and my friends listen to me and they respect me, and I respect them too. If I could change the world, I would make sure there is no crime, disease, or hunger and that everybody is treated with the same respect. Liam is 14 years old and lives in the United Kingdom. Co-author: Jessica Wythe (Birmingham City University).

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15 THE RIGHTS OF THE CHILD WHEN SYMBOLIC LANGUAGE IS OUT OF REACH Kristin Vindhol Evensen Introduction Severe and multiple disabilities (SMD) are, by nature, complex. An operationalisation of the concept is vitally important, as our understanding of it is affected by the perspectives we bring to it (Fröhlich 2018). In the dominant medical perspective, SMD is described as a complex condition where motor-, somatic-, cognitive-, and health-related difficulties co-appear with loss of sensory functions (Horgen 2006). This results in a condition where one difficulty compounds the other. As described by Thomas (2004), disability can be understood in a social relational perspective, where disability is understood as a mismatch between person and environment, happening in different situations, contexts, and in relation to others. In this perspective, experiences are shaped by the way impairments define a person’s possibilities (Traustadóttir et al. 2015). If having an impairment is seen as a hopeless state of being, social arrangements will limit that person’s ability to be part of society. If the mismatch is seen as having impairments and being disabled by society while having agency and subjective assets, all humans can contribute through social relations. From an embodied phenomenological perspective, disability is understood through lived experiences, where every person is considered an embodied being enveloped in space, in time, with objects, and in relation to other people. Thus, a fundamental principle of embodied phenomenology is to credit experiences as fully worthy, no matter the point of departure of the experiencing person (Merleau-Ponty 2014). This fundamental principle of embodiment is found in a quote where special needs educator Maria describes how Oliver, a second-grade student with multiple disabilities, experiments with his newly gained ability to walk. Through pedagogical reasoning, she gives value to the interplay between Oliver, his movements, and his surroundings. Thus, Maria carries out the philosophical ground of embodied DOI: 10.4324/9781003056737-21

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phenomenology in practical pedagogical decisions that allows Oliver to walk his way of walking: So, I thought, ‘well, what would a person that just has learned to walk like to do’? Of course, you would like to walk. Walk, walk, walk, walk. A completely new world unfolds. (Evensen and Standal 2017, p. 6) Research has focused on objective medical deviations (see, for example, Perifano and Scelles 2015) or social relational arrangements (see, for example, Calculator 2009) related to SMD. The expressivity of the child is presented in terms of normative skills of symbolic language rather than as embodied subjective expressiveness. Symbolic language—like spoken words, a variety of sign languages, picture exchange communication systems (PECS), pictograms, Bliss, eye-tracking technology, and so forth— represents what is understood as the inner world of the expressive child. By acknowledging the embodied phenomenology of French phenomenologist Merleau-Ponty (1967; 1973; 2010; 2014), I argue that movement and absence of movement can express subjective perspectives in ways that might assure freedom of expression for a child with SMD. Embodied phenomenology gives credit to the moving body as fully worthy and intentionally expressive. Merleau-Ponty (2014) sees the body as a hub which all subjective experiences gather around. Thus, embodied movements seek out or avoid certain experiences in space, in time, with objects, and in relation to others. Freedom of expression is a right for every child, as stated in the United Nations Convention on the Rights of the Child (1989) (CRC). It is also a specific right for the child with a disability in the United Nations Convention on the Rights of Persons with Disabilities (2006) (CRPD). This chapter discusses a group of children with disabilities so complex and severe that they cannot speak out or use symbolic expressions in order to claim their rights on a political level. Rather, a child with SMD expresses subjective perspectives that concern their daily life through embodied outreaches. It is through embodied outreach that the child’s right to freedom of expression is confirmed or overruled. Embodied expressions of a child with SMD link to the right to self-determination as fundamental to freedom of expression, in the same way that symbolic communication is acknowledged as expressed self-determination for another child. Embodied expressions might be modest, like sweaty palms, the change of breath, or the glimpse of an eye, or attention-claiming, like in screaming and kicking outbursts. To which degree such embodied expressions are recognised or discredited determines if embodiment is accepted as giving access to a person’s subjective perspective. Upholding the right to freedom of expression as a human right implies that a child with SMD ought to be surrounded by empathic, sensitively attuned others who confirm and include the child’s smiles, cries, muscle tonicity, gestures, mimicry, breath, eye contact, tears, sweaty palms, movements, odours, sounds, or tactile outreaches in mutual interaction. In their acknowledgement of subjective, embodied perspectives, the child can be emancipated. 266

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Asking the research question ‘What about the rights of the child when symbolic language is out of reach?’ I discuss how the UNCRPD, in combination with the UNCRC and research investigating the communication of children with SMD, recognises the child as entitled to freedom of expression. Might the fact that embodiment is not explicitly mentioned in the UNCRPD unintentionally exclude the child that communicates pre-symbolically, or is this a sign of equal worth for all humans? And can embodied phenomenology as philosophy apply scientific appreciation of the moving body that can complement important medical and social relational knowledge?

Research That Addresses Communication When Children Have SMD Most disability research that includes a child with SMD assumes symbolic communication as the gold standard when interventions are made and when skills are assessed. Emphasis on symbolic communication is framed by behavioural interventions based on medical diagnoses, as well as by social relational arrangements contextualising friendship, play, and interplay. The greater number of these research projects as compared to projects that accredit subjective movements express the hegemonic position of symbolic communication as superior. I conducted a review of the databases Web of Science, EbscoHostSportDiscus, ERIC, and Oria. The review used the following concepts: child*, young child*, communicat* or interact* or interplay* with severe* multiple* disabil* or severe* multiple* impair*. The search provided 454 hits, followed by 420 exclusions. The need to exclude many studies shows that ‘severe, multiple disabilities’ is a phrase whose content is difficult to separate from other phrases describing disabilities. I read titles and abstracts and excluded studies based on the following criteria: • • •

• •

• • •

studies including persons over the age of 18; one study with an English title where the chapter was written in Portuguese; studies considering children with deaf-blindness, autism spectrum disorders, dyslexia, attention deficit/hyperactivity disorder, or deafness without additional disabilities; studies addressing parents’ communication with the support system; studies addressing diagnoses that do not necessarily combine severe, multiple disabilities (e.g. Fragile X-syndrome) (these studies were excluded when reading made it clear that the condition was not severe and multiple); methodological studies; studies addressing economic burdens when children have SMD; and studies about abuse of children.

The review provided a total of 34 relevant studies that can be grouped into three main themes: communication as technical skill, communication as contextually dependent, and expressivity as caused by medical diagnoses. 267

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Sixteen studies describe communication as a trainable technical skill. Four of these apply a critical approach to whether learned techniques provide insight into the subjective perspectives of the child. Fourteen studies describe contextual impressions, relations, and interplay as decisive when a child with SMD expresses their perspective. Four studies describe the child’s expressions as causal effects of medical diagnoses. The results are presented in Table 15.1. Twelve of the 16 studies describing communication as a trainable technical skill show that children increase communicative skills when subject to interventions or rehearsal. For example, the child learns to point to symbols like BLISS or to use other augmentative and alternative communication symbols that represent persons, actions, or items. For example, Lancioni et al. (2006) describe how the children in their study learn to push switches that are adapted to detect their subjective signs for ‘yes’ when lifting the foot and ‘no’ when turning the head. These signs are transformed into Table 15.1 Results of Review of Relevant Studies Category

Authors

Communication as trainable skill; critical perspective

Calculator, R. 2009; Campbell, P. H., Milbourne, S. Dugan, L. M. and Wilcox, J. M., 2006; Holmqvist, E., Thunberg, G. and Dahlstrand, M. P., 2018; Hummels, C., van der Helm, A., Hen-Geveld, B., Luxen, R., Voort, R., Van Balkom, H. and De Moor, J., 2007; Lancioni, G., O’Reilly, M., Singh, N., Oliva, D., Marziani, M. and Groeneweg J., 2002; Lancioni, G., Singh, N., O’Reilly, M & Oliva, D., 2004; Lancioni, G., Singh, N., O’Reilly, M., Oliva, D., Monitroni, G., & Chierchie, S. 2004; Lancioni, G., Singh, N. O’Reilly, M. and Bacani, S., 2006; Lancioni, G. Singh, N. and O’Reilly, M., 2017; Mumford, L., Lam, R., Wright, V. and Chau, T. (2014); Shull, J., Deitz, J., Billingsley, F., Wendel, S & Kartin, D., 2004; Stasolla, F., Caffo, A. O. and Damiani, R., 2015 Horn, E. and Kang, J., 2012; Pilesjö, M. S & Norèn; N., 2017; Suhonen, E., Nislin, M., Alijoki, A. and Sajaniemi, N., 2015; Wilder, J., Magnusson, L. and Hanson, E., 2015 Expressivity connected to Bonnike, D. R., Douglas, K. H. and Stone, J. B., 2018; Lima, M., Silva, K., Amaral, I., Magalhaes, A. and de Sousa, L., 2013; contextual impressions, Mc.Ferran, K. S. and Shoemark, H., 2013; Munde, V. S., relations, and interplay Vlaskamp, C. Maes, B. and Ruijssenaars, A. J., 2014; Tunson, J. and Chandler, C., 2010; Young, H., 2016; Hautaniemi, B., 2004; Nijs, S., Vlaskamp, C. and Maes, B., 2016; Perifano, A., Scelles, R., 2015; Wilder, J & Granlund, M., 2003; Groark, C. J., Muhamedrahimov, R. J., Palmov, O. I., Nikiforova, N. V & Mc Call, R. B., 2005; Olsson, C., 2006; Stensæth, K., 2013 Expressions are causal Derby, K, Fisher, W. and Piazza, K., 1996; Mount, R. H., effects of medical Hasting, S., Richard, P., Reilly, S., Cass, H. and Charman, T., diagnoses 2001; Ryan, D., McGregor, F., Akermanis, M., Southwell, K., Ramke, M. and Woodyatt, G., 2004; Cass, H., Price, K., Reilly, S., Wisbeach, A. and McConachie, H., 1999

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spoken ‘yes’ and ‘no’ by a vocal output device. The researchers describe possibilities of translating subjective expressions into symbolic language, thus making communication of children with SMD more accessible. In line with other studies listed in Table 15.1, this approach maintains that technical devices and skill rehearsal make the expressions of children with SMD more distinct and accessible to those around them. Four critical studies in this category show that communicational use of technical devices or improvement of skills are of limited worth if the relationship between pre-symbolic interplay and symbolic communication is unquestioned. For example, Suhonen et al. (2015) describe how children with SMD do not necessarily increase their social competence even if they increase their communicative skills. Thus, they continue to fall short in play and in social contexts. The child who increased their communicative skills showed a higher degree of withdrawal from play, with the result that they had less experience of taking turns, solving conflicts, or negotiating perspectives despite active use of expressions adapted to the situation. The lack of participation in play appears to be related to lack of subjective interplay possibilities rather than lack of technical communicative skills. The authors assert that a child with SMD experiences the social aspects of communication, like directedness towards others and the meaning of non-verbal communication. They advocate for the importance of sensitive adults responding through imitating expressions, stimulation of symbolic expressions, and regulation of emotions. Fourteen studies describe contextual impressions, relationships, and interplay as decisive for a child’s expressivity. These studies show that it is not impairment alone or context alone that shapes children’s expressive ability. The quality of relationships a child can form appears fundamental to whether they express experiences to those around. Groark et al. (2005) describe how Russian orphaned children with SMD increased their regulation of affects and improved their language, motor, and social development when the orphanage staff were trained in responsive, sensitive care. Wilder and Granlund (2003) show how children’s ability to express themselves about their experiences are more closely connected to whether the carer includes the child’s subjective expressivity than to the child’s objective interactional skills. When a child with SMD is engaged in reciprocal interplay, meaning unfolds when the child and the child’s significant others are open towards the other’s possibilities. Being in reciprocal interaction means engaging in interplay with one another in ways that keep the interaction going (Karoff 2013). Thus, we can say that interplay is fundamental to interactions and that interaction is fundamental to communication. Four studies present children’s expressions as objective and causally related to impairment. These studies describe expressivity and communication as causal behaviour connected to objective and diagnostic hallmarks, like hunger, thirst, and tiredness, as a negative search for attention. Expressions can be interpreted as phenotypic characteristics, meaning, that persons with rare genetic disorders interact with their environment in specific ways. Self-injurious behaviour is also included. For example, Mount et al. (2001) describe how expressions like stereotyped, repetitive hand movements, difficulties sleeping, teeth grinding, and breathing problems in girls with Rett syndrome can be understood as expressions of genetic phenotypes in the syndrome when the girl interacts with her environment. 269

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The CRPD and Self-Determination The CRPD was adopted by the UN in 2006, came into force in 2008, and by October 2020, was ratified by 182 nations. Until the Convention came into force, persons with disabilities were not directly mentioned in human rights treaties, except for the CRC, which dedicates Article 23 to children with disabilities. The rights of every child and every adult with disabilities can thus be said to be secured in other general human rights instruments, like the United Nations Declaration of Human Rights (DHR), later framed by the International Bill of Rights (United Nations 1948, 1976). Yet if rights of minority groups are neglected, separate conventions addressing specific challenges are needed. When a ratified convention formally and explicitly mentions rights of minority groups, states are obligated to protect and carry these rights out. The fact that the CRC and the CRPD state the right of children and persons with disabilities might remind the world that minority groups have the same human rights as everyone else (Skarstad 2019). Self-determination is a cornerstone of the rights of the child, as set out in the CRC. Self-determination is given even greater emphasis in the CRPD to ensure the human rights of persons with disabilities (Skarstad 2018a). Without self-determination, it would be difficult to comply with the UDHR, in particular, Article 12, freedom from interference with privacy, family, home, and correspondence; Article 19, freedom of opinion and information; and Article 24, right to rest and leisure. The UDHR applies to everyone, with no exception. Despite this, persons with intellectual disabilities have been limited when claiming access to their rights thereunder. The European Union Agency for Fundamental Rights (2013) states that there is a gap between human rights treaty policies on paper and the everyday life experience of persons with disabilities. This is further supported by Didi, Dowse, and Smith (2018) as well as Skarstad (2018a; 2018b; 2019), who claim that the right to self-determination for persons with intellectual disabilities is particularly challenged in daily life, like where and how to live, including what kind of education and leisure activities are available to them. Self-determination of persons with intellectual disabilities is also challenged by the prevalent use of guardianship, where a legal guardian makes decisions on behalf of their entrusted person (European Union Agency for Fundamental Rights 2013). Guardianship can be full or partial. With the former, the person with intellectual disability loses power to take decisions recognised by law (Okura 2018; Willis et al. 2016). With the latter, it can restrict the ability to make decisions about where to live, what to do, and how to be treated (European Union Agency for Fundamental Rights 2013). People with intellectual disabilities describe self-determination in everyday life as a balance between autonomy and guidance about personal care, social life and activities, relationships, where to live, economy, and health and well-being. Autonomy and guidance are experienced and described in a range of ways by persons with intellectual disabilities themselves. A man with intellectual disabilities describes his want for guidance when he says, ‘I go wherever my parents want; I do not want to choose’ (Inclusion International 2014, p. 49), while a woman with intellectual disabilities describes a sense of equality when she says that her contact person ‘is like [her] friend’ when they take trips and do activities together (Inclusion International 2014, p. 53). These quotes show that nuances of dependency and self-determination find their shape between social arrangements and subjective experience, among others. 270

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Implicit and Explicit Perspectives on Expressivity The CRPD describes how human rights can be exercised for persons with disabilities. Overarching principles, like the right to freedom of expression and access to information, are stated in Article 21. Additionally, the duty on the state to facilitate freedom of expression is described in Article 2 and Article 9, with reference to a variety of communication technologies, including the right to interact with others through Braille and other forms of scripts and augmentative and alternative communication (AAC). The Convention does not distinguish between type or severity of impairment. This means that all rights belong to every person with every disability and every level of impairment, as stated by the UNCRPD committee’s comment on Article 12: equal recognition before the law (Committee on the Rights of Persons with Disabilities 2014). Thus, on the political level, there is no hierarchy indicating that one way of communication is better than another. The CRPD’s emphasis on self-determination and specific reference to freedom of expression provides a firm foundation at the political level. But what happens when fundamental rights are developed into more specific provisions? Literature directed towards parents, teachers, and other professionals emphasises the importance of accrediting non-symbolic communication when symbolic language is out of reach (Fröhlich 2018; Holmen 2020; Horgen 2006). The emphasis on the value of the pre-symbolic is also found in other cultural expressions (Leicester and Leicestershire Learning Disability Partnership Boards 2013; Fjordholm filmproduksjon 2011) that recognise the value of embodied expressivity.

SMD and the Victories and Shortcomings of the CRPD The Preamble and the first nine articles of the CRPD set out the Convention’s general framework, while Articles 10–30 deal with aspects like education, health, and personal mobility. By making no distinction between type and level of impairment, the CRPD enshrines the principle that those with the most complex and severe conditions are entitled to the same rights as everyone else. In the Preamble, the indisputable importance of human worthiness is obvious. Paragraph 10 states that it is necessary to protect the rights of every person with a disability, including the rights of those that need comprehensive support. The Preamble’s paragraph 14 states that every human being with a disability is entitled to autonomy and independence, achieved through the freedom to make choices on one’s own. The Convention’s Article 7, paragraph 3 states that a child with disability must be allowed to express views freely and that the child is entitled to be provided with appropriate support in order to fulfil this right. Article 24, paragraph 3a says that states are obliged to facilitate learning of Braille, different scripts, augmentative and alternative formats of communication, and that peer support and mentoring are important means in that regard. The General Comments to Article 12 (equal recognition before the law) highlight that the road from good intentions to good actions is bumpy for adults with intellectual disabilities. Even if the Convention does not make distinctions between type and degree of disability, the right to equal recognition before the law in everyday life is denied to many and especially to those with intellectual disabilities. The comments 271

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mention guardianship, enforced treatment, health, education, work, access to finance and property, and sexual life as important areas that states must pay specific attention to in order to implement the Convention as intended. If the rights of adults with intellectual disabilities are denied, the rights of children with intellectual disabilities, as an even more vulnerable group, should be held up as object to extra concern. Skarstad (2019) points out that the CRPD continues to give rise to research about disabilities and human rights, begun by researchers like Stein (2007) and Kayess and French (2008). Skarstad (2018b) also describes how the CRPD champions a perspective where persons with disabilities are acknowledged as competent actors rather than as medical deviations or objects requiring extensive social care and charity. As such, the CRPD marks a turning point compared with more traditional medical and social relational perspectives. Skarstad (2019) points out that even if the CRPD promotes equality, literature about it falls short when attempting to address structures of discrimination in human rights work. This shortcoming is particularly acute regarding persons with intellectual disabilities (Skarstad 2018a). Furthermore, Skarstad (2018b) points out the importance of recognising the other as a willful subject. When communicative interaction between a child with SMD and their significant other takes place, relationality bridges different points of departure. Yet the embodied dimension might be lost if attention is focused too narrowly on the interpersonal aspects. Thus, there is a danger that embodied expressivity as interpersonal exchange of embodied perspectives might be overshadowed by the dominant medical and social perspectives. The CRPD underlines that supportive measures should be adapted to the needs of the individual (see, for example, the right to education in Article 24, paragraph 2e), and that a person with disabilities should have the possibility to learn practical and social skills that enable participation in education as an active member of society (Article 24, paragraph 3). Article 24, paragraph 3 provides more specific descriptions of forms of communication important to this goal, including Braille, alternative scripts, augmentative and alternative communication (AAC), and assistive communication technology. It is important to notice that CRPD Article 24, paragraph 3-a recognises that use of communicative tools depends on orientation and locomotion skills, as well as through organisation of peer and mentor activities. Skarstad (2018b) claims that the CRPD advances an equality-based understanding of disability and, as such, positively opposes structures that continue oppressing persons with disabilities. She claims that paying attention to the importance of human relationships underlines that disability is a part of human diversity. A focus on the relational in social relational theory shows that all humans depend on each other, that rights are safeguarded when relationships are supportive, and that rights are inherent, not something we have to be worthy to receive.

Embodied Communication and SMD: A Path Towards Freedom of Expression in Rights and Research As seen in the presentation of research about communication and SMD, communication as skill is presented as something that can be developed and refined. Communication can facilitate expressivity through organisation of the surroundings. This 272

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includes adopting an expanded view of what is considered normality in the social relational perspective. The medical and the social relational are encompassed in the embodied phenomenological perspective, in that the notion of movement includes a person’s experiences of having an objective body, of being a social relational participant, as well as a fully worthy embodied subject. The medical perspective reflected in the promotion of assistive technology and skills training is important when making pre-symbolic expressions accessible to others. However, acknowledging acquisition of skills and how medical knowledge facilitates well-being and diminishes pain, and how the social relational safeguards humans’ need for belonging in a shared world, should not diminish the importance of embodied expressivity. The CRPD is unique as it acknowledges the right to self-determination and freedom of expression regardless of type or degree of disability. In this, the Convention reflects the phenomenological perspective and its appreciation of life with disability as a fully worthy life, as well as how embodied movements are fundamental to communication. Embodied expressivity is not only foundational for future symbolic communication but is also an independent and satisfactory approach to getting to know and understand the other—if we recognise it as such and let go of our view that the symbolic is the primary goal. To do so goes hand in hand with how many disability scholars in general and scholars working within the social relational perspective in special have challenged the notion of normality. The embodied phenomenological approach acknowledges every movement as a fully worthy carrier of subjective perspectives that reach out in a world shared with others. Approaching a child with SMD from this perspective can be particularly appropriate to secure the rights of the child, as it credits this child’s lifeworld as fully worthy and, at the same time, qualitatively different from a lifeworld without SMD. If embodied phenomenology is applied alongside benefits of medical and social relational perspectives on SMD in research and in everyday life, the right to freedom of expression can also be safeguarded.

Freedom of Expression: The Lived Experience of Oskar and Sara The following vignettes are taken from my doctoral dissertation (Evensen 2018), where I utilised Merleau-Ponty’s embodied phenomenology to show how embodied expressions can shape interpersonal relationships when disability is severe and complex. When children have SMD, embodied expressions are idiosyncratic. When given value, these expressions provide pegs on which macro and micro interactions can rest. The first vignette describes what happens between Oskar, a fourth-grade student in a special needs education unit adapted to children with SMD, and his teacher Maria: Oskar sits on the floor and Maria supports his back. Oskar drivels and smiles to his reflection smiling back at him in the mirror on the wall. Oskar topples forward and seizes a Christmas chain of shiny, red plastic pearls. He shakes his arm, everything from his shoulder and down to his closed fist moves. Maria stretches towards a big, blue IKEA bag made of 273

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thick, woven plastic. She places it under Oskar’s leg, and he starts to move his knee eagerly back and forth. The more the bag crackles, the wider Oskar smiles. He lifts his head, searching for the look of his teacher in the mirror. He catches her glance and smiles to her. She smiles back at him. (Evensen, Standal and Ytterhus 2017, p. 66) Acknowledging embodied expressivity of a child with SMD means paying attention to the moving body in its environment. Recognising movement as something existential, something foundational for every human being, touches upon the subjective and the political level of experiences. Queer phenomenologist Sara Ahmed (2006, p. 135) emphasises the importance of spaces when she states that troublesome experiences take place in ‘the moments when the body appears “out of place”, as these are moments of political and personal trouble’. Bodies out of place are more exposed to surroundings that do not fit their point of departure, and thus, they have more limited possibilities than bodies that fit the shape of the given world. When Oskar is enveloped in a suitable space, with suitable objects, and given appropriate time, his opportunity to act and to reach out for others increases. When given opportunities to experience relationships with others that see him as expressive and competent, Oskar can experience freedom of expression. When he reaches out for others, for objects, in space and in time, his embodiment carries a world of meaning.

Embodied Expressivity and the Meaning of the Other Merleau-Ponty (2014) presents embodied outreaches as a framework for understanding disabilities as total ways of being. This implies accrediting every subjective movement as a carrier of meaning that can be detected and acted upon. Thus, an embodied phenomenological approach to SMD is an approach that might support the right to freedom of expression for the child who cannot perform symbolic expressions. Acknowledging presence or absence of movement, gesture, outreach, or mimicry will confirm the child as a subject born free rather than a child objectified and obliged to change in order to reach a certain standard of normality. Even if the CRPD states that freedom of expression is a right for all, acknowledgement of embodied movement could have been made more explicit in the Convention’s wording. Embodied phenomenology offers philosophical and practical codes of conduct for how to act when symbolic language is out of reach. Returning to embodiment when a child has SMD is returning to what is common ground for all, underlining what ties us together rather than what keeps us apart. Embodied phenomenology maintains that embodied expressions carry meaning that can but does not have to be translated into symbolic language in order to be deemed expressive. Merleau-Ponty (2014, p. 372) states: I perceive the other’s grief or anger in his behaviour, on his face and in his hands . . . because grief and anger are variations of being in the world, undivided between body and consciousness, which settle upon the other’s behaviour and are visible in his phenomenal body, as well as upon my own behaviour such as it is presented to me. 274

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The following vignette finds resonance with Merleau-Ponty (2014) as it shows how movements and absence of movements express perspectives and shape experiences without being translated. Movements turn into communication through the way Anna, Sara’s teacher, acknowledges embodied expressivity. Sara is a sixth-grade student with SMD in a special needs education unit. She lies in a solid wooden piece of furniture covered with mattresses and containing a feeding bottle, teddies, pillows, blankets, and soft toys: Sara lies on her back with her feet pulled all the way up to her belly. She makes long-lasting and deep-toned wailing sounds. Anna, Sara’s teacher, climbs up on the furniture and sits down. She faces Sara, stretches her legs out, gestures that she wants Sara to sit up. Then she grasps Sara’s hands and tries to drag her upper body towards her own. Sara resists, she withdraws her hands, stays down and continues wailing. After a couple of minutes, Sara stops wailing. Anna takes a firm grasp under Sara’s armpits, and leads her up until she sits. Anna lies backwards and tries to drag Sara with her so that she can lie belly down on Anna’s body, stomach to stomach, chest to chest, face to face. Sara resists, turns her face away, lies down on her back again and continues to wail monotonously. The minutes pass by. Anna waits quietly. All of a sudden, Sara stops wailing and sits up in Anna’s lap. Their faces are close, Sara slants her head. With low voice Anna starts slowly to sing: ‘Row, row, row your boat, gently down the stream. Merrily, merrily, merrily, merrily, life is but a dream’. Sara sways from side to side following the rhythm of Anna’s song. Anna sings the verse over and over again and then stops. Shortly after, Sara stops swaying. Sara sits still for a while. Then, she continues to sway. Immediately, Anna starts to sing again. (Bjorbækmo et al. 2018, p. 24–25) This anecdote is a real-life example of how embodied outreaches are fully worthy expressions even without being subject to translation into symbolic language. Yet it is important to note that Sara’s and Anna’s personal knowledge of the other is created through interplay in everyday life through many years, and their being in these moments is analogously directed towards the other. In the same way, Merleau-Ponty (2014) claims that a smile is not the symbol of happiness; it is happiness. Sara’s reluctance to take hold of Anna’s hand is not a symbol of resistance; it is resistance. Nevertheless, embodied expressions need to be interpreted if those besides the child’s closest significant others ought to respond as correct as possible to the child’s dislikes and preferences. Responses of children with SMD are often idiosyncratic, and the meaning of what is expressed is specific to the child as a subject. Porter et al. (2001) provide an example from Peter, a boy with lissencephaly, in order to show the complexity in his way of communicating. Peter’s medical diagnoses include seizures, recurring chest infections, a tracheotomy for breathing, and a gastrostomy for nutriment. The authors describe how Peter’s 275

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significant others like his brother and his staff at school interpret Peter’s expressions in very different ways: For example, in the case of Peter, school staff assumed that his tapping of a helium balloon was that he was playing, whereas the family felt he was trying to push it away. (Porter et al. 2001, p. 16) Peter’s moving fingers when he taps the balloon ought to be understood by considering inference and intent behind his movement. The tapping must be observed, with a specific attention towards Peter’s reaction to how he is interpreted. Observing and including responses in commonplace experiences might enable those surrounding Peter to facilitate his emancipation. Yet there will always be a possibility for misinterpretations. Special needs educator Maria describes how making mistakes is important when aiming to know her student Oskar even better: Sometimes, we make mistakes. This is unavoidable. That is a part of our learning, to try, to fail and then to do one’s best the next time. So, I follow my gut feeling, and the better I know my students, the easier it is for me to trust my gut feeling. (Evensen, Ytterhus and Standal 2017, p. 6) The right to freedom of expression is safeguarded when apparently trivial situations carry self-determination. Accrediting experiences of the other while being aware of one’s own subjective point of departure is an approach full of promise. MerleauPonty (2014) describes how subjective experiences include acknowledging the sameness and the difference of other subjects, like when he and his friend Paul see the same church tower in a landscape. They share the experience of seeing the same church tower. Still, they recognise that no matter how close they are, they experience the church tower from two different starting points.

Conclusion What can be learned from the relationship between conventions, research, and lived examples is that the right to freedom of expression applies to all children, everywhere, at any time. The right to freedom requires that childhood with disability is treasured as fully worthy, that embodied outreaches are accredited as expressive, and that significant others are continuously curious when interacting and interpreting embodied signals of a child with SMD. We are all embodied beings. Embodiment has its obvious place in the lifeworld of humans on the full spectrum from the utopia of total able-bodiedness to the condition of total dependency. There is a close connection between embodiment and freedom of expression as a human right for children with SMD. All humans are entitled

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to the same value in the UDHR, CRC, and CRPD. The fact that embodiment is unmentioned in the conventions might mean that it is acknowledged as expressivity in a human continuum as well as meaning a neglect of its importance. The lived experiences of Oliver, Oskar, and Sara demonstrate that accrediting embodiment is a way of safeguarding freedom of expression. The crux appears to be placed in the landscape of research, policies, and legislation that pays credit to children with disabilities as fully worthy beings.

Key facts: Freedom of expression is a right for every child according to the Convention on the Rights of the Child. Freedom of expression is according the Convention on the Rights of Persons with Disabilities (CRPD) also a right for every child with disabilities so complex and severe that they cannot speak out or use symbolic experssions. CRPD underlines that supportive measures should be adapted to the needs of the individual. The embodied expressivity of a child with severe and multiple disability is an independent approach to getting to know and understand the child`s subjective perspective. The safeguarding of freedom of expression when a child has severe and multiple disability requires surroundings that treasures disability as fully worthy. Couriosity is vitally important when significant others aim to interpret the expresisons of the child with severe and multiple disability.

Open access resources: Evensen, K. V. and Standal, Ø. F. 2017. I guess that the greatest freedom. A Phenomenology of Spaces and Severe Multiple Disabilities. https://www.tandfonline.com/doi/abs/10.1080/20797222.2017.1356628 Evensen, K. V., Standal, Ø. F. and Ytterhus, B. 2017. Golden Paper, a Chain and a Bag: A Phenomenology of Queer Things in a Special Needs Education Unit. https:// www.researchgate.net/publication/330330386_Golden_Paper_a_Chain_and_a_ Bag_A_Phenomenology_of_Queer_Things_in_a_Special_Needs_Education_Unit Evensen, K. V., Ytterhus, B. and Standal, Ø. F. 2017. “He is not crying for real”: severe, multiple disabilities and embodied constraint in two special-needs education units. https://www.tandfonline.com/doi/full/10.1080/20021518.2017.1387474 Bjorbækmo, W. S., Evensen, K. V., Groven, K. S., Rugseth, G. and Standal, Ø. F. 2018. Phenomenology of Professional Practices in Education and Health Care: An Empirical Investigation. https://nih.brage.unit.no/nih-xmlui/handle/11250/2564203.

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References Ahmed, S. 2006. Queer phenomenology. Orientations, objects, others. Durham: Duke University Press. Bjorbækmo, W. S., Evensen, K. V., Groven, K. S., Rugseth, G. and Standal, Ø. F. 2018. Phenomenology of professional practices in education and health care: An empirical investigation. Phenomenology & Practice 12(1), pp. 18–30. Bonnike, D. R., Douglas, K. H. and Stone, J. B. 2018. Social positioning: Increasing the nonsymbolic and symbolic communication of students with complex communication needs. International Journal of Special Education 33(1), pp. 152–170. Calculator, R. 2009. Augmentative and alternative communication (AAC) and inclusive education for students with the most severe disabilities. International Journal of Inclusive Education 13(1), pp. 93–113. Campbell, P. H., Milbourne, S. Dugan, L. M. and Wilcox, M. J. 2006. A review of evidence on practices for teaching young children to use assistive technology devices. Topics in Early Childhood Special Education 26(1), pp. 3–13. Cass, H., Price, K., Reilly, S., Wisbeach, A. and McConachie, H. 1999. A model for the assessment and management of children with multiple disabilities. Child Care, Health and Development 25(3), pp. 191–211. Committee on the Rights of Persons with Disabilities. 2014. General comment no. 1. [online] [Accessed on 10.10.2021] Available from: documents-dds-ny.un.org/doc/UNDOC/ GEN/G14/031/20/PDF/G1403120.pdf?OpenElement Convention on the Rights of Persons with Disabilities and Optional Protocol. 2006. [online] [Accessed on 10 October 2021] Available from: www.un.org/disabilities/documents/convention/convoptprot-e.pdf. Convention on the Rights of the Child. 1989. [online] [Accessed on 12 August 2021] Available from: www.ohchr.org/en/professionalinterest/pages/crc.aspx Derby, K, Fisher, W. and Piazza, K. 1996. The effects of contigent and noncontigent attention on self-injury and self-restraint. Journal of Applied Behavior Analyses 29(1), pp. 107–110. Didi, A., Dowse, L. and Smith, L. 2018: Intellectual disability and complex support needs: Human rights perspective for policy and practice. The International Journal of Human Rights 22(8), pp. 989–1006. European Union Agency for Fundamental Rights. 2013. Legal capacity of persons with intellectual disabilities and persons with mental health problems. [online] [Accessed on 11 October 2021] Available from: https://fra.europa.eu/ Evensen, K. 2018. Give me a thousand gestures. Embodied meaning and severe, multiple disabilities in segregated special needds education (Doctoral Dissertation), Oslo, Norwegian School of Sport Sciences. Evensen, K. V. and Standal, Ø. F. 2017. I guess that the greatest freedom. A phenomenology of spaces and severe multiple disabilities. Indo-Pacific Journal of Phenomenology 17, pp. 1–11 Evensen, K. V., Standal, Ø. F. and Ytterhus, B. 2017. Golden paper, a chain and a bag. a phenomenology of queer things in a special needs education unit. Phenomenology & Practice 11(2), pp. 60–69. Evensen, K. V., Ytterhus, B. and Standal, Ø. F. 2017. He is not crying for real. Severe, multiple disabilities and embodied constraint in two special needs education units. Society, Health and Vulnerability 8(1), pp. 1–10. Fjordholm filmproduksjon 2011. Barnet med det rare i [The child filled with strange things]. [online] [Accessed on 21 March 2022] Available from: https://vimeo.com/235336002 Fröhlich, A. 2018. Basal stimulering for mennesker med multifunksjonshemming [Basic stimulation for humans with severe and multiple disabilities]. Oslo: Kopinor. Groark, C. J., Muhamedrahimov, R. J., Palmov, O. I., Nikiforova, N. V and Mc Call, R. B. 2005. Improvements in early day care in Russian orphanages and their relationship to observed behaviors. Infant Mental Health Journal 26(2), pp. 96–109. Hautaniemi, B. 2004. Känslornas betydelse i funktionshindrade barns livsvärld [The meaning of emotions in the lifeworld of children with disabilities] (Doctoral Dissertation), Stocholms, Pedagogiska Instituten, Stocholms Universitet. Holmen, L. 2020. Med verden i hendene [With the world in the hands]. Hommersåk: Lyrikkforlaget.

278

The Rights of the Child when Symbolic Language is out of Reach Holmqvist, E., Thunberg, G. and Dahlstrand, M. P. 2018. Gaze-controlled communication technology for children with severe multiple disabilities: Parents and professionals’ perception of gains, obstacles and prerequisites. Assistive Technology 30(4), pp. 201–208. Horgen, T. 2006. Det nære språket. Språkmiljø for mennesker med multifunksjonshemming [The close language. Language environment for persons with severe, multiple disabilities]. Oslo: Universitetsforlaget. Horn, E. and Kang, J. 2012. Supporting young children with multiple disabilities: What do we know and what do we still need to learn? Topics in Early Childhood Special Education 31(4), pp. 241–248. Hummels, C., van der Helm, A., Hengeveld, B., Luxen, R., Voort, R., Van Balkom, H. and De Moor, J. 2007. Explorascope: Stimulation of language and communicative skills of multiple handicapped children through an interactive adaptive educational toy. Digital Creativity 18(2), pp. 79–88. Inclusion International. 2014. Independent but not alone. A global report on the right to decide. [online] [Accessed on 12 February 2022] Available from: www.inclusion-europe.eu/inclusion-international-releases-global-report-on-the-right-to-decide/Karoff, H. S. 2013. Play practices and play moods. International Journal of Play 2(2), pp. 76–86. Kayess, R. and French, P. 2008. Out of darkness into light. Introducing the convention on the rights of persons with disabilities. Human Rights Law Review 8(1), pp. 1–34. Lancioni, G., O’Reilly, M., Singh, N., Oliva, D., Marziani, M. and Groeneweg J. 2002. A social validation assessment of the use of microswitches with persons with multiple disabilities. Research in Developmental Disabilites 23(5), pp. 309–318. Lancioni, G. Singh, N. and O’Reilly, M. 2017. Promoting functional activity engagement in people with multiple disabilities through the use of microswitch-aided programs. Frontiers in Public Health 5(205), pp. 1214–1218. Lancioni, G., Singh, N., O’Reilly, M. and Bacani, S. 2006. Teaching ‘yes’ and ‘no’ responses to children with multiple disabilities through a program including microswitches linked to a vocal output device. Perceptual and Motor Skills 102(1), pp. 51–61. Lancioni, G., Singh, N., O’Reilly, M and Oliva, D. 2004a. A microswitch program including words and choice opportunities for students with multiple disabilities. Perceptual and Motor Skills 89(1), pp. 214–222. Lancioni, G., Singh, N., O’Reilly, M., Oliva, D., Monitroni, G. and Chierchie, S. 2004b. Assessing a new response-microswitch combination with a boy with minimal motor behavior. Perceptual and Motor Skills 98(2), pp. 459–462. Leicester and Leicestershire Learning Disability Partnership Boards 2013. If you listen, you will hear us. [online] [Accessed on 12.10.2022] Available from: www.mefirst.org.uk/resource/ if-you-listen-you-will-hear-us/ Lima, M., Silva, K., Amaral, I., Magalhaes, A. and de Sousa, L. 2013. Beyond behavioural observations: A deeper view through the sensory reactions of children with profound intellectual and multiple disabilities. Child Care, Health and Development 39(3), pp. 422–431. Mc.Ferran, K. S. and Shoemark, H. 2013. How musical engagement promotes well-being in education contexts: The case of a young man with profound and multiple disabilities. International Journal of Qualitative Studies on Health and Well-being 8, pp. 1–14. Merleau-Ponty, M. 1967. The structure of behavior. USA: Beacon Paperback. Merleau-Ponty, M. 1973. The prose of the world. Evanston: Northwestern University Press. Merleau-Ponty, M. 2010. Child psychology and pedagogy. The sorbonne lectures 1949—1952. Evanston: Northwestern University Press. Merleau-Ponty, M. 2014. Phenomenology of perception. Oxon: Routledge. Mount, R. H., Hasting, S., Richard, P., Reilly, S., Cass, H. and Charman, T. 2001. Behavioural and emotional features in Rett syndrome. Disability and Rehabilitation 23(3/4), pp. 129–138. Mumford, L., Lam, R., Wright, V. and Chau, T. 2014. An access technology delivery protocol for children with severe, multiple disabilities: A case demonstration. Developmental Neurorehabilitation 17(4), pp. 323–242. Munde, V. S., Vlaskamp, C. Maes, B. and Ruijssenaars, A. J. 2014. Catch the wave! Timewindow sequential analyses of alertness stimulation in individuals with profound intellectual and multiple disabilities. Child Care, Health and Development 40(1), pp. 95–105. Nijs, S., Vlaskamp, C. and Maes, B. 2016. The nature of peer-directed behaviours in children with profound intellectual and multiple disabilities and its elationship with social scaffolding behaviours of the direct support worker. Child Care, Health and Development 42(1), pp. 98–108.

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Kristin Vindhol Evensen Okura, S. 2018. The last suffrage movement in Japan: Voting rights for persons under guardianships. Contemporary Japan 30(3), pp. 189–203, Olsson, C. 2006. The kaleidoscope of communication. Different perspectives on communication involving children with severe multiple disabilities (Doctoral Dissertation), Stockholm, Stockholm Institute of Education. Perifano, A. and Scelles, R. 2015. Psychological distress of children with progressive diseases and multiple disabilities: A crossed analyses. Archieves de Pediatrie 22(9), pp. 916–923. Pilesjö, M. S. and Norèn, N. 2017: Teaching communication aid use in everyday conversation. Child Language Teaching and Therapy 33(3), pp. 241–253. Porter, J., Ouvry, C., Morgan, M. and Downs, C. 2001. Interpreting the communication of people with profound and multiple learning difficulties. British Journal of Learning Disabilities 29, pp. 12–16. Ryan, D., McGregor, F., Akermanis, M., Southwell, K., Ramke, M. and Woodyatt, G. 2004. Facilitating communication in children with multiple disabilities: Three case studies of girls with Rett syndrome. Disability and Rehabilitation 26(21/22), pp. 1268–1277. Shull, J., Deitz, J., Billingsley, F., Wendel, S. and Kartin, D. 2004. Assistive technology programming for a young child with profound disabilities: A single-subject study. Physical & Occupational Therapy in Pediatrics 24(4), pp. 47–62. Skarstad, K. 2018a. Ensuring human rights for persons with intellectual disabilities? Self-determination policies and the use of force in the case of Norway. The International Journal of Human Rights 22(6), pp. 774–800. Skarstad, K. 2018b. Human rights through the lens of disability. Netherlands Quarterly of Human Rights 36(1), pp. 24–42. Skarstad, K. 2019. Funksjonshemmedes menneskerettigheter. Fra prinsipper til praksis [The human rights of persons with disabilities. From principals to practice]. Oslo: Universitetsforlaget. Stasolla, F., Caffo, A. O. and Damiani, R. 2015. Assistive technology-based programs to promote communication and leisure activities by three children emerged from a minimal conscious state. Cognitive Processing 16(1) pp. 69–78. Stein, M. A. 2007. Disability human rights. College of William and Mary Law School. Virginia USA: William and Mary Law School Scolarship Repository. Stensæth, K. 2013. Musical co-creation? Exploring health-promoting potentials on the use of musical and interactive tangibles for families with children with disabilities. International Journal of Qualitative Studies on Health and Well-being 8, pp. 1–12. Suhonen, E., Nislin, M., Alijoki, A. and Sajaniemi, N. 2015. Children’s play behaviour and social communication in integrated special day-care groups. European Journal of Special Needs Education 30(3), pp. 287–303. Thomas, C. 2004. Rescuing a social relational understanding of disability. Scandinavian Journal of Disability Studies 6(1), pp. 22–36 Traustadóttir, R., Ytterhus, B., Egilson, S. T. and Berg, B. 2015. Childhood and disability in the Nordic countries. Being, becoming, belonging. London: Palgrave MacMillan. Tunson, J. and Chandler, C. 2010. Behavioral states of children with severe disabilities in the multisensory environment. Physical & Occupational Therapy in Pedriatics 30(2), pp. 101–110. United Nations. 1948. Universal Declaration of Human Rights. 1948 [online] [Accessed on 17 October 2021] Available from: www.ohchr.org/en/udhr/documents/udhr_translations/eng.pdf. United Nations. 1976. International Bill of Rights [online] [Accessed on 21 March 2022] Available from: www.un.org/en/about-us/universal-declaration-of-human-rights Wilder, J. and Granlund, M. 2003. Behaviour style and interaction between seven children with multiple disabilities and their caregivers. Child Care, Health and Development 29(6), pp. 559–567. Wilder, J., Magnusson, L. and Hanson, E. 2015. Professionals’ and parents’ shared learning in blended learning networks related to communication and augmentative and alternative communication for people with severe disabilities. European Journal of Special Needs Education 30(3), pp. 367–383. Willis, D., McGlade, I., Gallagher, M. and Menabney, C. 2016. Voting and the scottish referendum: perspectives of people with intellectual disabilities and their family and paid carers. Disability & Society 31(7), pp. 914–928. Young, H. 2016. Loss and profound intellectual disabilities: The significance of early separation responses. Advances in Mental Health and Intellectual Disabilities 10(6), pp. 315–323.

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16 DO ALL CHILDREN HAVE THE RIGHT TO EXPRESS VIEWS? Listening to ‘Differently Voiced’ Communicators Lauran Doak Introduction The right of disabled and non-disabled children to express their views on matters affecting them is now well-established in international policy. The UN Convention on the Rights of Persons with Disabilities (2006) (CRPD) requires signatories to ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right. (Art. 7) Similar provision exists in the UN Convention on the Rights of the Child (1989) (CRC): States Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child. (Art. 12) Whilst these aspirations are laudable, the question of how this right is to be realised in practice for children with significant disability-related communication difficulties requires further examination. Is ‘disability- and age-appropriate assistance’, such as DOI: 10.4324/9781003056737-22

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augmentative and alternative communication (AAC), a universal solution? Is the right to have one’s views taken seriously contingent upon the attainment of some notional yet poorly defined threshold of ‘age’, ‘maturity’, or ‘communicative capability’? Does such a threshold subsequently exclude the views of disabled children with the most complex communication needs? This chapter sets out to unpack these questions. Communication needs may arise as a result of intellectual or learning disabilities, which can include difficulty with learning, recalling, spontaneously producing, sequencing or combining words, signs, or symbols. Communication needs may alternatively be associated with a physical impairment which renders speech production impossible or unclear, or with a combination of physical and intellectual impairment. It is difficult to establish the worldwide prevalence of childhood communication needs due to a lack of global epidemiological data on childhood developmental disabilities generally (Olusanya et al. 2018) as well as the diffusion of communication difficulties across diverse underlying medical diagnoses (Bunning et al. 2014; Wylie et al. 2013). The World Report on Disability by the World Health Organisation (WHO) and the World Bank (2011) indicates that approximately 15% of the world population (over one billion people, including children) experiences some form of disability, with 2–4% experiencing significant difficulty in functioning. We do not have specific WHO data on the prevalence of communication difficulties within these figures, although Bunning et al. (2014) estimate that 1.1–1.9% of children globally have complex communication needs. In England, unmet communication needs in childhood have been associated with social, emotional, and behavioural disorders, increased referrals to mental health, lower academic attainment, unemployment, and criminal offending (ICAN/RCSLT 2018). These findings underline the importance of ensuring that disabled children have a means to express their views. In this chapter, I begin with a discussion of the right to express views for children I refer to as systematic communicators. By this I mean children and young people who are able to use any recognised formal system(s) of communication (such as speech, typing, sign language, AAC) to a level that would permit expression of views through that modality. For instance, a child in this category would be able to convey information about what they do and do not enjoy about school, and a person who had not previously met the child but was familiar with their communication system would understand the information conveyed. I then discuss separately the expression of views for children I refer to as idiosyncratic communicators. This denotes children and young people who have limited or no use of any recognised formal communication system but who communicate in ways which are known to family, friends, and familiar caregivers. For example, a particular non-verbal vocalisation, gesture, or facial expression might come to be known as an expression of happiness based on repeated interactions and a sustained relationship with the child. It is acknowledged that this systematic/idiosyncratic binary is merely a heuristic device and that the reality is more complex. For instance, communicators might traverse the categories gradually over time as part of their developmental 282

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trajectory, or rapidly and temporarily due to fluctuating health or environmental factors. Further, this chapter does not presuppose an underlying cognitive developmental binary, as absence of systematic communication can result from inadequate assistive technology equipment or instruction or low expectations on the part of educators and health professionals (Bryan 2018). Finally, this chapter explores some of the complex epistemological, ethical, and theoretical questions raised by the process of learning to attend to the views of differently voiced communicators.

Expressing Views: Systematic Communicators As we have seen, Article 7 of the CRPD (Children with Disabilities) refers to ‘disability- and age-appropriate assistance’ to realise the right to expression of views. Here, I argue that such assistance can be conceptualised on three levels. The immediately evident level is the material provision of assistive technology, other resources, or human assistance in the form of interpreters. A second level is cognitive scaffolding of the expression of views through resources that not only enable non-verbal expression but also support vocabulary and conceptual recall and sequencing. A third level of support is pedagogical, that is, ensuring that meaningful vocabulary pertaining to self-advocacy and expression of views is both available and taught regularly so that it forms part of a communicator’s readily usable repertoire.

Technological Support Some children can combine words, phrases, and sophisticated concepts with ease: their communication needs are simply for a medium other than verbal speech that will be understood by the listener. A famous example of such a communicator is the late professor Stephen Hawking, who authored books and delivered talks on theoretical physics through a speech-generating device (SGD). Examples of children and young people in this category might include a deaf child who expresses their views fluently through their national sign language, or a child with cerebral palsy who has significant physical impairment, but not learning disabilities, who communicates using an SGD controlled by eye gaze. In this case, the SGD can be based on conventional literacy skills, which allows the child to spell out words independently, although SGDs which are symbol-based can provide more support for communicators with more significant levels of learning disabilities. The difference that appropriate provision can make to systematic communicators can be life-changing, as described by SGD user Sophie Webster: My [SGD] has been amazing help to me, it has reduced many, many meltdowns and helps me daily whether it be asking for things from my carer on in a shop to telling the doctor how I’m feeling. It is amazing to be listened, heard and understood for the first time. (Webster 2016, p. 22) 283

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In these cases, support for expressing views might seem relatively straightforward, a ‘reasonable accommodation’ as envisaged by Article 2 of the CRPD, achieved by providing equipment or an interpreter. What in principle appears straightforward, however, is not necessarily happening in practice. The cost of assistive technology and access to speech and language therapy can be prohibitive in the Global South (Bunning et al. 2014). More developed economies do not necessarily fare better, with UK provision of SGDs described as ‘inconsistent and inequitable’ (Judge et al. 2017, p. 181).

Cognitive Scaffolding The second level of assistance required by some systematic communicators is cognitive scaffolding of the expression of views. This is important for communicators who have difficulties not only with speech production but also with short- and/or long-term memory, vocabulary, or conceptual recall, or sequencing a narrative. An example of a resource providing this type of support is Talking Mats© (Murphy 1998), which asks communicators to physically arrange symbol cards under categories of ‘like’ and ‘dislike’. The provision of concrete manipulatives can be a useful scaffold as it allows participants to see visual representation of the issue being discussed and facilitates the reviewing of previous answers (Bunning and Steel 2007). Stewart, Bradshaw, and Beadle-Brown (2018) further note that Talking Mats© may shift the power balance between interviewer and interviewee and subsequently produce less ‘acquiescence’ than a traditional interview. This is because communicators are placed in a more agentic position of actively sorting cards into categories rather than responding to an interviewer-led questioning, which may invite agreement as the cognitively easier option which will require less verbal elaboration. Other approaches which draw upon visual scaffolding of ideas include the use of video (Rojas and Sanahuja 2012), photo elicitation (Fisher 2009), and photovoice (Booth and Booth 2003). These approaches may facilitate recognition of the right to express views in a wider group of communicators. As Stewart et al. (2018, p. 2) argue, our over-reliance on research methods such as interviews has meant that the right to express views has often been denied to ‘all but the most verbally able’ disabled people. Whilst this literature foregrounds communication in the context of research participation, the communication approaches explored are relevant to anyone wishing to listen more attentively to disabled children, including practitioners and policymakers.

Pedagogical Support The third level of support is pedagogical: the provision of an SGD, signing system, or other resource will not by itself facilitate the expression of views unless relevant vocabulary is provided, taught, and used regularly. Elsewhere, I have noted the heavy representation of requesting words and transactional vocabulary (‘I want a biscuit’) and vocabulary associated with politeness and acquiescence (‘Please, thank you’) in 284

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children’s classroom AAC repertoires (Doak 2018). This is echoed by the lived experience of Webster (2016): [A]t school [I] couldn’t explain what was wrong and why I was getting upset unless it was on my symbol keyring which had basic needs on it such as toilet, drink, teachers’ names, snack. It was extremely limited and meant I was unable to make friends and have any voice at school which led to hours of meltdowns and nobody ever knew why. (Webster 2016, p. 21) The predominance of requesting and politeness-related AAC vocabulary persists into adulthood for learning-disabled people. Brewster (2007) observed in an adult residential facility an overemphasis on the ‘requesting’ speech function as well as the policing of vocabulary such as expletives. This, she argues, points to complex relationships between vocabulary and power: being cast primarily in the role of ‘requester’ consolidates the position of both children and adults with learning disabilities as needy, dependent, and passive recipients of services. Dreyfus (2006) describes a ‘chicken and egg’ situation: should we wait until we consider a communicator cognitively capable of expressing views before teaching the necessary vocabulary, or is the provision and teaching of such vocabulary a form of conceptual scaffolding for understanding of ‘views’ to emerge? From a Vygotskian perspective: The relationship of thought to word is not a thing but a process, a movement from thought to word and from word to thought . . . speech does not merely serve as the expression of developed thought. Thought is restructured as it is transformed into speech. (Vygotsky 1987, pp. 250–251) In order for a child to self-identify as a capable expresser of views, therefore, the provision and teaching of relevant vocabulary is an essential ‘tool’ to scaffold such an understanding of self. Embedding approaches such as Talking Mats or AAC-mediated phrases such as ‘I like . . .’, ‘I don’t like . . .’, ‘I hate . . .’ into everyday home and classroom life may support capability as a confident self-advocate. The harnessing of AAC for self-determination and expression of views has been associated with better post-school outcomes and quality of life (Kleinert et al. 2010), pointing to the need to take expression of views seriously in our AAC pedagogy.

Expressing Views: Idiosyncratic Communicators Some children who do not use a communication ‘system’ instead develop idiosyncratic communication, such as facial expression, non-verbal vocalisation, and behaviours which are interpreted by the people who know them well. In this section, I examine four possible approaches to ‘hearing the voice’ of an idiosyncratic communicator: communication passports, wearable technology, (multimodal) observation, and proxy informants. 285

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Communication Passports A ‘communication passport’ (Millar and Caldwell 1997) is a document which describes the idiosyncratic communicative behaviours of a minimally verbal person and their likely significance. This description is for the benefit of new caregivers or professionals who do not have a shared history of interacting with the person. For example, the passport might explain that a particular movement, facial expression, or vocalisation is typically an indication of distress, drawing upon the knowledge which has been accrued by the child’s closest family, friends, and carers. The document might also be supplemented with video evidence depicting behaviours and their significance (Millar and Aitken 2003). Goldbart and Caton (2010) argue that communication passports are not so much an intervention directed at the person as at their environment. This makes them congruent with the social model of disability (Oliver 1996): the aim is not to increase systematic communication but rather for interactants to become more responsive to the existing communication strategies the person already has. A range of resources are available to support the production of communication passports, including downloadable templates (CALL Scotland 2018) and books (Millar and Aitken 2003), although there is a need for further formal published evaluation of their usefulness (Goldbart and Caton 2010).

Wearable Technology Recent developments in wearable technology permit insight into the physiological responses of the wearer to different stimuli and environments. For instance, Vos et al. (2010) measure breathing and heart rate variables with Dreamer® technology in an attempt to study emotions of people with profound intellectual and multiple disabilities (PIMD), whilst Lyons et al. (2013) explore the use of startle reflex modulation technique (SRM) to infer positive or negative emotional responses. Such measurements have even been used to generate BioMusic (Blain-Moraes et al. 2013), which involves the child wearing non-invasive sensors that measure a range of autonomic nervous system signals and convert them to a holistic soundscape which can be heard by others. The presence of electrodermal activity (sweat) drives the melody, skin temperature changes the musical key, blood volume pulse drives the tempo, and respiration shapes the musical articulation and phrasing. According to Blain-Moraes et al. (2013), seven out of eight caregivers reported that BioMusic had a positive impact on their interactions with their child by sensitising them to their child’s subtle physiological responses. Cheung et al. (2016) further argue that BioMusic can be useful to quickly identify anxiety in autistic children. Nevertheless, both ethical and epistemological questions remain about the use of physiological measures such as BioMusic, which are explored later in the chapter.

Participant Observation The perspective of idiosyncratic communicators may also be explored through observation of their behaviours and responses in everyday settings. I am conscious that discussing observation gives the impression of a singular method, whereas it 286

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encompasses a proliferation of approaches with diverse underlying theoretical bases and analytical lenses. Here, I examine some studies which elucidate the perspectives of minimally verbal communicators through observation. Observational studies more frequently make the modest claim of documenting immediate reactions or preferences to an event rather than the more expansive epistemological claim of extrapolating views. For example, Hingley-Jones (2016) reflects on the usefulness of ethnographic observation to support social workers in understanding the lived experience of adolescence for teenagers with severe learning disabilities, although she does not claim to have accessed views: As an adolescent with significant needs, it is not possible for Daniel to straightforwardly tell a researcher how things are for him, yet through the observation, elements of his personality and adolescent identity emerge, set within the web of his relationship with the people with whom he lives. (p. 124) Maes et al. (2021) argue that observation allows researchers to attend closely to the person’s behaviour in an everyday context, without depending upon the interpretations of proxy informants (discussed further in the following). Additionally, the authors note that observation which uses video recording allows researchers to repeatedly interrogate their data afterwards, facilitating deeper and more complex analytic possibilities. As an example, I have previously used fine-grained multimodal analysis to examine the communicative moves of non-verbal children with autism and learning disabilities from video observation data in a classroom context (Doak 2019). By transcribing visual data second by second in a multimodal matrix, I analysed the significance of embodied communicative moves, including eye gaze, gesture, postural and proxemic shifts, vocalisation, and object manipulation. Multimodal analysis provides a powerful analytical framework for observational data as it accords equal analytic status to all communicative modes by resisting the conventional privileging of language (Jewitt, Bezemer and O’Halloran 2016). This framework, in turn, contributes to an ontological construction of the child as ‘differently voiced’ (Ashby 2011) rather than non-verbal: in other words, they are still recognised as agentic meaning-makers who wish to communicate their needs, desires, preferences, aversions, and personhood. However, like Hingley-Jones’s (2016) research, my study did not make the epistemological claim of extrapolating views from observed and analysed embodied behaviours. Simmons and Watson (2018) explore the subjective lifeworld of a child with PIMD using participatory and non-participatory observations, pre-observation focus groups, and ongoing dialogue with staff and parents. Their approach is framed by phenomenology which foregrounded lived experiences of intersubjectivity (Merleau-Ponty 2002). Numerous interactions between ‘Sam’ and the staff and peers in his mainstream and special settings are described in detailed narrative vignettes, and their possible interpretations are subjected to ongoing negotiation with Sam’s family and classroom staff. For instance, vignettes describe how Sam appeared frustrated 287

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by the special school staff prompting him to press a switch which would utter the words ‘good morning’, yet happy to press the switch in his mainstream school setting when supported by peers. On the basis of repeated observations, the authors consider whether the presence of non-disabled peers in his mainstream setting may place Sam in an optimum learning state: their presence ‘raises bodily expectations, alertness, and primes Sam to engage with his social milieu’ (Simmons and Watson 2018 p. 179). Whether or not these findings might be said to constitute Sam’s views about mainstream versus specialist education is an epistemological question which is explored later.

Proxy Informants A further way to consider the views of idiosyncratic communicators is through a proxy informant, typically a family member, carer, or key worker who knows the person well. McVilly, Burton-Smith, and Davidson (2000) examine the correspondence between quality-of-life assessments undertaken by participants with mild learning disabilities and by proxy informants answering on behalf of the disabled person. They find a very high degree of subject/proxy concurrence, concluding that the use of proxy informants can work, providing that the proxy had ‘close and regular contact’ (McVilly et al. (2000) p. 19) with the disabled person. Similarly, Gordon et al. (2007) report high subject/proxy concurrence when adults with mild learning disabilities and their key workers were asked to rate depression using a standardised scale. It should be noted that, in both of these studies, the reported mild learning disabilities might indicate an ability to verbally articulate one’s views on quality of life or depression and to converse on these issues with significant others in previous interactions. Such previous conversations may then contribute to the building of a shared understanding with proxy informants which may or may not exist in the case of idiosyncratic communicators with more severe learning disabilities. Other studies have sounded a more cautious note about proxy informants. Galloway and Newman (2017) note that children identified as having attention deficit hyperactivity disorder (ADHD) perceive their quality of life more favourably than their parents do. They conclude that proxy and self-ratings ‘should not be considered interchangeable . . . rather both should be considered as unique and valuable perspectives for clinical and research purposes’ (Galloway and Newman 2017, p. 26). Others have voiced concerns that proxies may find it difficult to divest themselves of their own views and should be given space to express their own views separately from their attempts to articulate the views of the disabled person. This may help them maintain the difficult balance between ‘imaginative fusion and reflective separation’ (Clegg (2003), cited in Nind 2008). Maes et al. (2021) argue that proxy informants may be able to approximate the disabled person’s perspective more accurately in discussion of more ‘objective’ issues, such as cognitive, communicative, and motor behaviour, and less so in discussion of ‘subjective’ themes, such as emotional experiences and personal perspectives. 288

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They advise that researchers seek to validate proxy reports through behavioural observation.

Ontological, Epistemological, and Ethical Issues So far, this chapter has reviewed some of the possibilities for hearing the views of children who might be termed systematic or idiosyncratic communicators. In this section, I discuss some of the ontological, epistemological, and ethical issues in attending to differently voiced views.

Ontological Issues Ontology concerns itself with the nature of being and the kinds of entities that can be said to have existence. There are at least two ontological questions which underpin the discussion of alternatively voiced ‘views’. The first is how we define the entity we are calling a ‘view’, and the second is what kind of child is recognised as an entity capable of possessing and expressing a ‘view’. These questions are explored together here as they are deeply intertwined. A ‘view’ is defined by the Cambridge English Dictionary (2022) as ‘an opinion, belief, or idea, or a way of thinking about something’. This definition might point to a degree of abstraction and endurance which is not entirely tied to the present experience: for example, although an opinion may evolve over time, one disappointing episode of our favourite television programme is unlikely to change our overall view that it is generally worth watching. Ware (2004, p. 175) has ‘serious doubts’ about whether people with profound and multiple learning disabilities (PMLD) ‘can be said to have views about complex conceptual issues at all’ (p. 176). She questions whether data capturing immediate responses—through wearable technology or observation— equate to a view: A photo of a child enjoying a particular activity can[not] be equated with them expressing the view that they want to participate in that activity. Neither is photographic evidence of a child with profound and multiple learning disabilities enjoying activities in a particular school the same as the child expressing a view that they want to attend that school. (Ware 2004, p. 176) Ware goes on to illustrate this point with the example of herself visiting the dentist: observations and measurements of physiological responses might indicate an extreme negative reaction, yet she nevertheless retains the view that visiting the dentist is a wise course of action. For this reason, she maintains, elevating behavioural and physiological responses to the status of views is ontologically ‘fraught with problems’ (p. 176). This position is supported by Nind (2008, p. 11), who similarly maintains that expressing a preference for something in the here and now ‘is not the same as being able to express views’. 289

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As in the CRC, both Ware and Nind conceptualise the person who is capable of forming and expressing a view as being in possession of certain prerequisite characteristics. Nind (2008, p. 11) argues: Views are different from reactions, they are opinions, beliefs, standpoints, notions, ideas and they require the person to be an intentional communicator rather than at a pre-intentional stage in which communicative intent is inferred by others. Ware (2004, p. 177) further argues that many ‘views’ additionally require the cognitive ability to conceptualise the future: Having a view about something that will take place in the future, will be ongoing or is complex or abstract requires a relatively advanced level of cognitive development. In order to have a view about some future event an individual needs at the very least to be able to anticipate that event and to be able to compare it (in some way) with similar events. Such a definition might exclude not only idiosyncratic communicators but also a tranche of the emergent-level systematic communicators who are able to use a communication system with a limited repertoire of symbols. For instance, the use of Talking Mats© to sort symbols into ‘I like’ and ‘I don’t like’ categories might satisfy the test of intentionality (an intention to indicate that you like the sensory room and don’t like outdoor play) yet fail to demonstrate views about the (un)desirability of future iterations of the categorised events (that you might like outdoor play better in the future with a different range of play equipment or playmates). Ware’s position has been subject to critique. Simmons and Watson (2015) argue that this position represents ‘a reductionist, post-positivist perspective that denies rights to people with PMLD’ (p. 55). According to their phenomenological position, the problem shared by both post-positivist and constructivist approaches is the individualism of the researcher/researched binary, whereby the researcher is an individual seeking to understand a separate individual as their object of research. In contrast, the authors seek to transcend the researcher/researched binary by foregrounding the creation of a shared space of intersubjectivity (Merleau-Ponty 2002). They make the case for a democratic relationship of knowledge co-construction: [This approach] focuses on voice not as singular and literal, but as something that is enacted or comes into being through relationships. Voice is a performance between Sam and his social and material world that unfolds in context. Sensitive observation and co-constructed interpretation of this performance allows Sam to talk in ways that escape objective behavioural observation schedules or constructivist ‘interview’ formats. (Simmons and Watson 2015, p. 63) 290

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In terms of the related question of who may hold a view, Simmons contends that everyone has a view, irrespective of their capacity to reflect on it using symbolic communication or temporal extrapolation: To deny that children with PMLD have a view because . . . they have not learned to communicate using a narrow collection of symbols (e.g. pointing) strikes me as being reductionist. It overlooks the wonderful ways that we are embodied and situated in the world, and how this informs our consciousness awareness about the world . . . children with PMLD have a view on the world already, insofar as it affords a meaningful space. (Simmons 2021) This understanding of view appears to have some similarity to a secondary definition offered by the Cambridge English Dictionary (2022) in the context of geographical viewpoints: ‘what you can see from a particular place, or the ability to see from a particular place’. In other words, each person has a view upon the world based on the interaction between the material affordances of the world relative to their own embodied presence and actions in and on that world. I would argue that this is a useful way of conceptualising ‘view’, as it acknowledges that all children, including all those with PIMD, have a ‘view’ and does not require that they articulate their view through words or other shared sign systems for it to be accorded legitimacy. At the same time, the caveats offered by Ware (2004) and Nind (2008) remind us to retain a degree of self-reflexivity in our practice and to continually question whether a currently held view can and should be assumed to apply to future events. From the previous text, we can see that there is disagreement about what constitutes a view and about whether there are cognitive and communicative prerequisites to being the kind of person who can legitimately be said to hold a view. This chapter began by noting that international convention accords the ‘right to express a view’ only to ‘the child who is capable of forming his or her own views’ (CRC, Article 12) or to express a view whose ‘weight’ may be evaluated in accordance with perceived ‘age and maturity’ (CRPD, Article 7). Whilst the removal of the requirement of capability of forming a view might be said to be a welcome step forward and indicative of developments in our thinking around disability between the older CRC and the more recent CRPD, ‘age and maturity’ in the CRPD nevertheless have potential to be used as a benchmark in their own right. For instance, Nowak, Broberg, and Starke (2020) note that professionals may cite lack of age and maturity as justifications for not implementing direct child participation in planning, decision-making, and evaluation of support. It is therefore important that we continue discussions around this conceptual uncertainty, lest we unintentionally start to accord basic convention rights only to those children who we deem to have met our poorly defined thresholds of competence. 291

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Epistemological Issues Epistemology refers to the study of knowledge, questioning what we know, how we have come to know it, and how we justify the validity of our knowledge. This section explores claims of generating knowledge about children’s views and how sure we can be of our interpretations of such views, particularly when they have not been expressed verbally but rather extrapolated from AAC-mediated expressions of preference or opinion, observation of multimodal embodied communication, and/or measured physiological responses. This question of how we can come to know the views of another is pertinent to many figures in the child’s life, including family members, educators, healthcare professionals and therapists, social care providers, policymakers, and researchers. In the context of academic research, the interpretative role of the qualitative researcher has been problematised for decades, even in a wider context of research with verbal participants, which yields conventional spoken and transcribed interview data. For instance, Lincoln and Guba (1986) acknowledge that the researcher can reach analytic conclusions which are not shared by participants, and they propose a range of measures to maximise the credibility of qualitative research. These include member checks (also referred to as participant validation), whereby participants are invited to read and dispute researcher interpretations; triangulation (comparing findings from multiple sources or research methods); and peer debriefing (discussing interpretative and analytic processes and conclusions with an academic peer). The epistemic problem of validating researcher interpretation is therefore not particular to studies involving disabled or alternatively voiced participants, and such research should not be thought of as categorically different in the epistemological challenges presented. Similarly in a family or practice-based context, it is entirely possible to misrepresent the views of a non-disabled child with verbal speech, particularly where power relations do not enable the child to easily contest adult misinterpretation. Careful, selfreflexive practice when attending to a child’s expression of views is therefore required across both research and practice. Nevertheless, several factors may render the role of careful and reflexive interpretation more pronounced in the case of alternatively voiced communicators. Firstly, behavioural responses (whether documented through human observation or physiological measurement) may not have the nuanced affordances of spoken language to express views, opinions, and responses with precision. For instance, Brooks (2014, p. 3) notes that the emotions of anxiety and excitement have ‘remarkably similar’ physiological correlates, ‘though they have divergent effects on cognition, motivation, and performance’. This physiological approximation of emotions increases the chance of researcher interpretation which diverges from participant lived experience. Additionally, the absence of spoken language means that participant validation of emergent analysis is not feasible. Cheung et al. (2016, p. 2) reflect on this conundrum in the context of BioMusic: Methodologically, it is extremely challenging to develop classifiers with a population who are unable to verify their performance or communicate the 292

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‘ground truth’. Ethically, we must be conscious of the potential challenges of assigning affective state labels to individuals who can neither confirm nor correct their accuracy. In the case of systematic communicators who use some form of AAC, questions may also arise about the extensiveness of their AAC vocabulary repertoire and its subsequent capacity to convey their views. We might question how the epistemological question (the extent to which we believe we can come to know the views of a differently voiced child) is related to the expansiveness of the vocabulary repertoire contained in their system. For the AAC user who has conventional literacy skills and can therefore type or otherwise generate sophisticated and nuanced messages, it is not difficult to see how participant validation may be achieved through further probing and invitation to elaborate upon or clarify initial responses. However, for the child who is working at the level of sorting symbol cards into I like/I don’t like, there is considerable interpretative work required on the part of the listener to discern possible intended nuances, such as ‘I like chocolate, but it makes me feel sick afterwards’ or ‘I enjoy sensory massages but only for short periods of time and with certain members of staff’. AAC is therefore a useful tool in the ongoing process of exploring views, but it does not obviate the epistemological conundrums associated with idiosyncratic communicators. I would argue that researchers, practitioners, and policymakers alike need to remain sensitised to the epistemological question of how we can come to know differently voiced views and acknowledge the epistemological limitations of selected tools for attending to views. Careful consideration should be given to how AAC, observation, proxy informants, and other methods may work together to help us build a picture of views in the context of an ongoing relationship with the child and carefully negotiated co-constructed meanings.

Ethical Issues Closely intertwined with ontological and ethical considerations are questions of ethics. Attempts to ascertain the views of differently voiced children may occur in the context of academic research where researcher conduct is governed by research ethics regulation from institutional committees and/or discipline-specific codes of conduct. They may also be undertaken in more general everyday settings, such as a teacher seeking to ascertain the child’s views on their education provision. In the former case, the ethical standards applied to the listener may be more rigorously formalised and involve higher degrees of external scrutiny and internal researcher reflexivity than in the latter case. However, I would argue that in either context, the following ethical considerations are worthy of consideration. Firstly, it is important to consider the deeply intersecting nature of epistemology and ethics when we are seeking to ascertain the views of another. On the one hand, as outlined previously, it is tempting to elevate a physiological response or a behavioural observation to the status of a view which is then used to guide future 293

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provision for the child. For instance, Blain-Moraes (2013, p. 162) acknowledges ‘the ethical concerns of inappropriately using BioMusic to indicate more than the occurrence of a physiological change’, whilst Cascio et al. (2020, p. 3) acknowledge that ‘translating emotional correlates [through BioMusic] also creates potential risks such as misrepresentation, or invasion of privacy’. If such physiological data is not carefully triangulated with knowledge of the child derived from a sustained relationship with frequent interaction, it could be misleading. For example, a child’s measured physiological responses to an event could be interpreted as excitement without considering the margin for interpretative error given the close correlation of physiological markers for excitement and anxiety (Brooks 2013). This child may then be repeatedly exposed to a particular therapy or approach which is anxiety-inducing. This would be an instance of harm, whether in a research or everyday context, and in the case of a non-verbal or minimally verbal user of the technology, the interpretation of the physiological data cannot be verbally verified. Given the epistemological challenges associated with ascertaining views, it might be tempting to conclude that the most ethical course of action is to declare the task impossible. However, I would argue that this approach is potentially even more problematic on ethical grounds. The term epistemic injustice (Fricker 2007) refers to ways in which we may ethically wrong someone on the grounds of unwarranted assumptions about their (lack of) status as knower. One form of epistemic injustice which is particularly relevant here is testimonial injustice, where ‘prejudice causes a hearer to give a deflated level of credibility to a speaker’s word’ (Fricker 2007, p. 1). If we disbelieve or discount someone’s account of their own experiences (their epistemic subjectivity), this is the primary epistemic harm, but for disabled people in particular, it may also result in secondary epistemic harms, such as learned helplessness, a loss of trust in one’s own knowledge, and the loss of ability to make decisions (Dohmen 2016). Not only does being discounted as a valid knower have ethical ramifications on the individual level, but it can also lead to more widespread testimonial injustice in terms of neglect of the views of differently voiced communicators in academic research. In their study of representation in autism research, Russell et al. (2019) note that whilst 50% of people with autism also have learning disabilities, this group is significantly underrepresented in research. Up to 94% of all autism study participants do not have learning disabilities. The authors go on to note that 80% of autism studies show selection bias against people with co-occurring learning disabilities who are considered a harder-to-reach population, with many researchers expressing the view that they do not have time to devote to securing their involvement in research. They conclude that ‘what we know about a condition may largely reflect groups who are easier to access’ (Russell et al. (2019) p. 8). This points to epistemic injustice on a wider scale: if we attend only to the views of those who express themselves verbally and therefore are amenable to our usual toolkit of research methods, we are failing to listen to a significant tranche of disabled children. This, in my view, is a serious and pressing ethical question. Consequently, I would argue that we should not be excessively fearful of methodological innovation over the risk of misinterpretation but rather proceed cautiously with a self-reflexive stance which acknowledges the possibility 294

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of misrepresenting the person’s intended communication. Of course, this epistemic injustice also has associated rights-based implications: as noted previously, the international right to express views is accorded the child deemed ‘capable of forming his or her own views’ (CRC, Art.12) or to express views which may be weighted ‘in accordance with their age and maturity’ (CRPD, Art.7). Our lack of attention to the complex ontological, epistemological, and ethical dimensions of enabling differently voiced communicators to express their view may lead us not to overinterpret their behaviour but rather to disregard ab initio any possibility of listening.

Conclusion This chapter has explored diverse ways of attending to the views and perspectives of children who are not primarily verbal communicators. It is encouraging to reflect on the ever-expanding range of established tools we have at our disposal to support, recognise, and amplify self-expression for both children who use AAC systems and children whose communication might be described as more idiosyncratic. At the same time, the CRC and CRPD appear to conceptualise this right not as universal but rather as requiring capability (CRC) or age and maturity (CRPD). This idea of ‘qualifying’ for the right to express views raises complex ontological, epistemological, and ethical questions. For instance, the question of what we understand a view to be raises questions about how (if at all) it does differ from an immediate preference or behavioural response. This, in turn, has implications for the types of children we deem in/capable of forming and expressing a view, and the cognitive prerequisites we consider necessary. It is clear that much discussion and research are needed on the question of how to attend to the views of differently voiced children. It is important that we make explicit and challenge assumptions about who may or may not hold or express a view, in order to ensure that differently voiced children are accorded their rights under international convention. This, in turn, has ethical implications which cut across research and practice, from the individual child whose perspective on their own education, healthcare, leisure, and other areas of service provision goes unacknowledged to wider-scale neglect of differently voiced children in academic research. Whilst technological innovation is to be cautiously welcomed as a means of diversifying our methodological toolkit, it is essential to continually evaluate such developments within an ontological, epistemological, and ethical framework. This involves a great deal of self-reflexivity for both researchers and practitioners: acknowledging our pre-existing beliefs and biases about whose views are worth attention and amplification; ongoing triangulation of information pertaining to a child’s views, with acknowledgement of uncertainty, ambiguity, and contradiction; and fully considering the implications in practice of an unintended misrepresentation of views. Perhaps, as the social model of disability suggests, we would do well to focus less on disabled children’s perceived in/capacity to express views and more on our own capacity to discern alternatively voiced views which come in myriad forms. 295

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The child’s ‘right to express views’ is a human right enshrined in the United Nations Convention on the Rights of the Child (UNCRC) and the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). However, both conventions appear to set benchmarks for the realisation of this right, referring to factors such as ‘age’, ‘maturity’ (UNCRPD), and the child being ‘capable’ of forming views (UNCRC). It is estimated that 1.1–1.9% of children globally have complex communication needs (Bunning et  al. 2014), meaning that verbal speech is not their primary means of communication. Such communication needs can be associated with Cerebral Palsy, Autism Spectrum Disorder, Profound Intellectual and Multiple Disabilities (PIMD), acquired brain injuries, and other conditions. Some children with complex communication needs use assistive technology known as Augmentative & Alternative Communication (AAC). The field of AAC has proliferated in recent years with the development of Speech-Generating Devices operated manually or through eye gaze, as well as the creation of AAC Apps designed to facilitate communication through everyday mobile devices. Other children may use ‘low-tech’ AAC options such as laminated symbol cards or manual signing systems, whilst some do not use AAC and may require interpretation of their embodied communicative behaviours by someone who knows them well. It remains unclear how the ‘right to express views’ applies to these children. There are complex epistemological and ethical questions involved in attending to the views of ‘differently-voiced’ communicators which have not yet received sufficient attention. There is an urgent need to address this.

References Ashby, C. E. 2011. Whose ‘voice’ is it anyway?: Giving voice and qualitative research involving individuals that type to communicate. Disability Studies Quarterly 31(4). Blain-Moraes, S., Chesser, S., Kingsnorth, S., McKeever, P. and Biddiss, E. 2013. Biomusic: A novel technology for revealing the personhood of people with profound multiple disabilities. Augmentative and Alternative Communication 29(2), pp. 159–173. Booth, T. and Booth, W. 2003. In the frame: Photovoice and mothers with learning difficulties. Disability & Society 18(4), pp. 431–442. Brewster, S. J. 2007. Asymmetries of power and competence and implications for AAC: interaction between adults with severe learning disabilities and their care staff (Ed. D. Thesis), Birmingham, University of Birmingham. Brooks, A. W. 2013. Get excited: Reappraising pre-performance anxiety as excitement. Journal of Experimental Psychology 143(3), p. 1144–1158. Bryan, J. 2018. Eye can write: A memoir of a child’s silent soul emerging. London: Bonnier Publishing. Bunning, K., Gona, J. K., Newton, C. R. and Hartley, S. 2014. Caregiver perceptions of children who have complex communication needs following a home-based intervention using augmentative and alternative communication in rural Kenya: An intervention note. Augmentative and Alternative Communication 30(4), pp. 344–356. Bunning, K. and Steel, G. 2007. Self-concept in young adults with a learning disability from the Jewish community. British Journal of Learning Disabilities 35(1), pp. 43–49. CALL Scotland. 2018. Personal communication passports. [online] [Accessed on 23 November 2021] Available from: www.communicationpassports.org.uk/creating-passports/

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Do all Children have the Right to Express Views? Cambridge English Dictionary [Online]. 2022. [Accessed on 19 April 2022] Available from: https://dictionary.cambridge.org/dictionary/english/view Cascio, M. A., Teachman, G., Grond, F., Tembeck, T., Blain-Moraes, S. and Park, M., What’s at stake with Biomusic? Ethical reflections on an emerging technology. [online] [Accessed on 26 November 2021] Available from: www.jhrehab.org/wp-content/uploads/2020/04/Cascio_JHR_Spring2020.pdf Cheung, S., Han, E., Kushki, A., Anagnostou, E. and Biddiss, E. 2016. Biomusic: An auditory interface for detecting physiological indicators of anxiety in children. Frontiers in Neuroscience 10, pp. 401. Doak, L. 2018. Exploring the multimodal communication and agency of children in an autism classroom (PhD Thesis), Sheffield, Sheffield Hallam University. Doak, L. 2019. ‘But I’d rather have raisins!’: Exploring a hybridized approach to multimodal interaction in the case of a minimally verbal child with autism. Qualitative Research 19(1), pp. 30–54. Dohmen, J. 2016. A little of her language’: Epistemic injustice and mental disability. Res Philosophica 93(4), pp. 669–691. Dreyfus, S. J. 2006. When there is no speech: A case study of the nonverbal multimodal communication of a child with an intellectual disability (PhD Thesis), Wollongong, University of Wollongong. Fisher, C. A. 2009. Photography as a communication tool for individuals with intellectual and developmental disabilities (PhD Thesis), Missouri, University of Missouri. Fricker, M. 2007. Epistemic injustice: Power and the ethics of knowing. Oxford University Press. Galloway, H. and Newman, E. 2017. Is there a difference between child self-ratings and parent proxy-ratings of the quality of life of children with a diagnosis of attention-deficit hyperactivity disorder (ADHD)? A systematic review of the literature. ADHD Attention Deficit and Hyperactivity Disorders 9(1), pp. 11–29. Goldbart, J. and Caton, S. 2010. Communication and people with the most complex needs: What works and why this is essential. [online] [Accessed on 2 February 2021] Available from: http:// espace.mmu.ac.uk/198309/1/Mencap%20Comms_guide_dec_10.pdf Gordon, M. S., Shevlin, M., Tierney, K. J., Bunting, B. and Trimble, T. 2007. Correspondence between self-ratings and key-workers’ ratings of depression in adults with mild learning disabilities. British Journal of Clinical Psychology 46(4), pp. 491–495. Hingley-Jones, H. 2016. Using observation to research the experiences of teenagers with severe learning disabilities. In G. Ruch and I. Julkunen (eds.), Relationship-based research in social work: Understanding practice research. London: Jessica Kingsley Publishers, pp. 107–126. ICAN/RCSLT. 2018. Bercow: Ten Years On. An independent review of provision for children and young people with speech, language and communication needs in England. [online] [Accessed on 23 November 2021] Available from: www.bercow10yearson.com/ Jewitt, C., Bezemer, J. and O’Halloran, K. 2016. Introducing multimodality. Routledge. Judge, S., Enderby, P., Creer, S. and John, A. 2017. Provision of powered communication AIDS in the United Kingdom. Augmentative and Alternative Communication 33(3), pp. 181–187. Kleinert, J. O., Harrison, E. M., Fisher, T. L. and Kleinert, H. L. 2010. ‘I can’ and ‘I did’— Self-advocacy for young students with developmental disabilities. Teaching Exceptional Children 43(2), pp. 16–26. Lincoln, Y. S. and Guba, E. G. 1986. But is it rigorous? Trustworthiness and authenticity in naturalistic evaluation. In D. D. Williams (ed.), Naturalistic evaluation: New directions for program evaluation. San Francisco: Jossey-Bass, pp. 73–84. Lyons, G. S., Walla, P. and Arthur-Kelly, M. 2013. Towards improved ways of knowing children with profound multiple disabilities: Introducing startle reflex modulation. Developmental Neurorehabilitation 16(5), pp. 340–344. Maes, B., Nijs, S., Vandesande, S., Van Keer, I., Arthur-Kelly, M., Dind, J., Goldbart, J., Petitpierre, G. and Van der Putten, A. 2021. Looking back, looking forward: Methodological

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Lauran Doak challenges and future directions in research on persons with profound intellectual and multiple disabilities. Journal of Applied Research in Intellectual Disabilities 34(1), pp. 250–262. McVilly, K. R., Burton-Smith, R. M. and Davidson, J. A. 2000. Concurrence between subject and proxy ratings of quality of life for people with and without intellectual disabilities. Journal of Intellectual and Developmental Disability 25(1), pp. 19–39. Merleau-Ponty, M. 2002. Phenomenology of perception. London: Routledge. Millar, S. and Caldwell, M. 1997. Personal communication passports. SENSE Conference, 13 September, University of Dundee. Millar, S. V. and Aitken, S. A. 2003. Personal communication passports: Guidelines for good practice. CALL Centre. Murphy, J. 1998. Talking Mats: speech and language research in practice. Speech and Language Therapy in Practice. (Autumn), pp. 11–14. Nind, M. 2008. Conducting qualitative research with people with learning, communication and other disabilities: Methodological challenges. [online] [Accessed on 23 November 2021] Available from: http://eprints.ncrm.ac.uk/491/ Nowak, H. I., Broberg, M. and Starke, M. 2020. Opportunity to participate in planning and evaluation of support for children with disabilities: Parents’ and professionals’ perspectives. Journal of Intellectual Disabilities 24(1), pp. 5–20. Oliver, M. 1996. Understanding disability: from theory to practice. London: Palgrave Press. Olusanya, B. O., Davis, A. C., Wertlieb, D., Boo, N.-Y., Nair, M., Halpern, R., Kuper, H., Breinbauer, C., De Vries, P. J. and Gladstone, M. 2018. Developmental disabilities among children younger than 5 years in 195 countries and territories, 1990–2016: A systematic analysis for the global burden of disease study 2016. The Lancet Global Health 6(10), pp. 1100–1121. Rojas, S. and Sanahuja, J. M. 2012. The image as a relate: Video as a resource for listening to and giving voice to persons with learning disabilities. British Journal of Learning Disabilities 40(1), pp. 31–36. Russell, G., Mandy, W., Elliott, D., White, R., Pittwood, T. and Ford, T. 2019. Selection bias on intellectual ability in autism research: A cross-sectional review and meta-analysis. Molecular Autism 10(1), pp. 1–10. Simmons, B. 2021. Email to Lauran Doak, 26 January. Personal Communication. Simmons, B. and Watson, D. 2015. From individualism to co-construction and back again: Rethinking research methodology for children with profound and multiple learning disabilities. Child Care in Practice 21(1), pp. 50–66. Simmons, B. and Watson, D. 2018. The PMLD Ambiguity: Articulating the life-worlds of children with profound and multiple learning disabilities. NewYork: Routledge. Stewart, K., Bradshaw, J. and Beadle-Brown, J. 2018. Evaluating service users’ experiences using Talking Mats®. Tizard Learning Disability Review 23(2), pp. 78–86. UNICEF UK. (1989). The United Nations convention on the rights of the child. [Online]. [Accessed 14 December 2022]. Available from: https://downloads. unicef .org.uk/wp-content/uploads/2010/05/UNCRC_PRESS200910web. pdf?_ga=2.78590034.795419542.1582474737-1972578648.1582474737 United Nations General Assembly. 2007. Convention on the rights of persons with disabilities (24 January 2007). [Online]. A/RES/61/106. [Accessed 14 December 2022]. Available from: https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html. Vos, P., De Cock, P., Petry, K., Van Den Noortgate, W. and Maes, B. 2010. What makes them feel like they do? Investigating the subjective well-being in people with severe and profound disabilities. Research in Developmental Disabilities 31(6), pp. 1623–1632. Vygotsky, L. S. 1987. The collected works of LS Vygotsky. New York: Plenum. Ware, J. 2004. Ascertaining the views of people with profound and multiple learning disabilities. British Journal of Learning Disabilities 32(4), pp. 175–179. Webster, S. 2016. My communication journey as a person with autism. Communication Matters 30(3), pp. 21–22.

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Do all Children have the Right to Express Views? World Health Organization and the World Bank. 2011. World Report on Disability. [Online] [Accessed on 23 November 2021] Available from: www.who.int/teams/noncommunicable-diseases/sensory-functions-disability-and-rehabilitation/world-report-ondisability Wylie, K., McAllister, L., Davidson, B. and Marshall, J. 2013. Changing practice: Implications of the world report on disability for responding to communication disability in underserved populations. International Journal of Speech-Language Pathology 15(1), pp. 1–13.

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SECTION 3

The Life Course in Childhood

17 BABIES WITH DISABILITIES AND THEIR ENTITLEMENT TO IMAGINED HOPEFUL FUTURES Belinda Johnson Looking down at a tiny bundle you hold in your arms, how do you make sense of this baby, this newcomer, who has just arrived in the world? Human babies are helpless and highly dependent upon the parent or caregiver for many years, unlike most other species. Indeed, the first months of a baby’s life have been conceptualised as a fourth phase of pregnancy (Karp 2012), an idea that understands the infant as more foetuslike than baby. Making sense of this newcomer, then, is a substantially imaginary task, infused with a hopeful sense of who this child could be and what they could do in coming years. When a baby receives a disability diagnosis, despite the way medical diagnoses seem highly scientific and factual, this pronouncement can also have a very abstract, imaginary dimension in relation to understanding who this infant with disability could be and what they could do in their life. These imaginary assumptions about a baby with disability can substantially differ from those made about other babies. Instead of the inherent hope and possibility generally associated with a new baby, for a baby with disability, medical professionals may focus on incapacity, limitations, and unlikelihoods. While the imaginary future about a baby occurs on an individual level, the assumptions that lie beneath such visions connect to a wider, shared social imaginary that informs how we understand ourselves in relation to others, including how we place ourselves within a ‘map of social space’ containing accepted norms on who is socially superior and inferior (Taylor 2004). This social imaginary, potentially shared by almost everyone in society, incorporates social norms and expectations of how we should act and think in different situations, underpinning our everyday practices, of ‘who to speak to and when and how’ (Taylor 2004, p. 25). A widespread social imaginary in many contemporary societies holds deeply ingrained ableist logics where having a disability is assumed to be a distinct and lesser category of human so that a DOI: 10.4324/9781003056737-24

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person with disability is understood to have a less valid and less valuable life (Campbell 2008). Viewing people with disability through a lens of deficiency informs discriminatory social practices and interactions. Babies without diagnosed disability are generally accorded a privileged assumption of imagined hopeful futures. Indeed, the wondrous hope generated by the arrival of a new baby is a joyful aspect of human experience. Babies are often a symbol of hope and can generate a sense of endless possibility, an expectation normalised within our social imaginary. Political philosopher Hannah Arendt (1958, p. 97) captures the momentousness of birth as a ‘supreme event . . . of appearance . . . within the world’. Arendt directs us to the Christian gospels, where it is the birth of Jesus that is celebrated as the moment of hope for humanity. Arendt quotes from the gospels, ‘A child has been born unto us’, describing this phrase as ‘a glorious and most succinct expression’ of the hope and potential in human natality. She suggests that the potent hope focused in the moment of Jesus’s birth is metaphoric for the hope held in the birth of all babies. Birth is then a ‘miracle that saves the world’, the ultimate moment of being and becoming, where possible futures are inherent in the moment, as birth is ‘a new beginning [in which] the action they are capable of by virtue of being born . . . can bestow upon human affairs faith and hope’ (Arendt 1958, p. 247). In contrast to Arendt’s portrayal of the profound hopefulness of a child’s birth, a well-regarded textbook on paediatric medicine presents an unproblematised—yet highly problematic—despairing image of parents’ response to the initial communication that their child has a disability as ‘some combination of shock, denial, disbelief, guilt, and an overwhelming sense of loss’ and that a later diagnosis also contains the difficulty for parents of ‘accepting that prior aspirations for their child . . . may need to be adjusted’ (Zajicek-Farber 2012, p. 660). The text implies that such a response by parents is appropriate, so that both the medical authorities and the parental responses they describe can be understood as drawn from the moral order of the ableist social imaginary, in which babies with disabilities are considered to have breached ableist expectations of what a baby ought to be, becoming ‘moral outsiders’ attributed with suffering and wretchedness (Kenny and Andre 2021, p. 89). In this textbook portrayal, a negative medical ontology which understands disability as a lesser way of being is taught to student paediatricians as the legitimate way to imagine babies with disability, inducting them into continuing ableist practices within medical settings. This parental ‘loss of an illusion’ is also a key theme identified in a more recent study of parents’ responses to a Down syndrome diagnosis (Frizell 2020). Yet most babies without disability are unlikely to grow up to fulfil possible parental fantasies of them becoming elite, exceptional, or famous. Many may not even meet their parents’ aspirations for them in more ordinary ways, such as getting married or graduating from university, and some babies with disability will grow up to achieve these things and more. As Arendt (1958) captures, an enduring sense of hopefulness and possibility is associated with babies without disability. The sense of loss experienced by parents upon their child’s disability diagnosis does not reflect knowable outcomes but comes from an unjust disabling comparative that is embedded in the ableist social 304

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imaginary. These preconceived, normalised ideas about disability are reinforced by powerful negative messaging from medical professions.

Differing Imaginaries as Human Rights Issue Extending the assumption of imagined hopeful futures to all babies and infants, including those with disabilities, is a claim for equal respect and human value. These values reflect key principles within the United Nations’ Universal Declaration of Human Rights (1948) (UDHR), the Convention on the Rights of the Child (1989) (CRC), and the Convention on the Rights of Persons with Disability (2006) (CRPD), which makes the issue of babies’ imagined futures one of human rights. Brown and Guralnick (2012, p. 271–272) describe the UDHR as ‘setting the stage for a series of human rights treaties that articulate a global consensus on the rights that all human beings have simply by being’. Their description makes clear that newborn babies and infants with disabilities have human rights. Discussions on human rights for babies and infants with disability tend to focus on access to services such as healthcare and early intervention services (e.g. Brown and Guralnick 2012) or on the impact of new, selective termination technologies on whether babies with disability are born (e.g. Lid 2015). Yet the CRPD is a ‘comprehensive articulation of the rights of all individuals with disabilities including infants and young children’ (Brown and Guralnick 2012, p. 271). Article 23 of the CRC presents a much broader human rights framing of all children with disabilities being entitled to ‘a full and decent life’ with conditions that ensure dignity, promote self-reliance, and facilitate a child’s active participation in the community. These conventions, then, acknowledge ‘the holistic needs of the child’ (Brown and Guralnick 2012, p. 274), beyond common areas of debate. Indeed, meeting this holistic frame of human rights for a person with disability must start at the earliest point of human status, which compels scrutiny of the attitudes taken towards a baby with disability and their imagined possible future.

Medical Definitions Shaping the Imaginary The medicalised, deficit-focused assumptions that are often imposed upon babies with disability in Global North contexts is a practice that is historically located. Late industrialisation in Global North societies in the late 19th and early 20th centuries saw reforms in child labour and education that created state protections for and investment into children but also generated government surveillance over their development via experts in health services (Borsay and Dale 2012). Thereby, new ideas about children at this time penetrated the social imaginary, in a process where a new outlook then shaped new practices (Taylor 2004). Medicalised services, professionals, and allied health ‘claimed jurisdiction over the disabled child’ (Borsay and Dale 2012, p. 4), control they enacted through defining children with diagnoses and then designing and conducting interventions for them. While much has changed in disability policy and service provision in many nations over the last 40 years (see Walmsley and Jarrett 2019), a starkly negative attitude to newborns with disability endures as 305

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an ableist binary within the social imaginary. Difference to children without disability is emphasised, difference assumed to make them lesser, reflecting the historical assumptions within the Global North service model (Borsay and Dale 2012, p. 4). The ableist binary at the core of this difference is fed in Global North contexts by a ‘quest for the perfect child in the twentieth century [that] increasingly required interventions by medical experts’ (Borsay and Dale 2012, p. 10). More contemporary analysis describes how neoliberal imperatives of ‘independence, self-sufficiency and economic productivity’ (Frizell 2020, p. 15) imposed upon individuals, imperatives that dominate some Global North economies including Australia, further entrench the ableist binary for children. In contemporary times, a significant moment in who a baby with disability is understood to be and how their future is imagined is when medical professionals communicate a diagnosis to parents. This can be understood as a ‘speech act’, a way that the social imaginary is enacted (Taylor 2004, p. 26), which affirms the social position of the ‘addresser’ in relation to the ‘addressee’, and what is being said is affirmed in relation to what has been spoken before. In the communication of diagnosis, the medical professional as ‘addresser’ is positioned as superior expert over the parents and the baby. The responsibility of a medical professional at this early point of diagnosis, according to Zajicek-Farber (2012, p. 660), is ‘to deliver the diagnosis honestly, with compassion, carefully choosing their words, and responding to any questions that parents may have’. While this directive seems ethical, and certainly compassion in such conversations is crucial, the paediatrician here is not cautioned not to devastate all hope for the child’s imagined future. Indeed, responding ‘honestly’ is perhaps loaded, suggesting that limitations on who this child could be ought to be flagged, as part of the ableist moral order: that medical facts and risks need emphasising and that lessscientific ideas of hope and possibility could breach professional ‘honesty’. Indeed, a paediatrician could provide a wholly negative impression that leaves parents without any hope for their child’s future and still meet Zajicek-Farber’s directive. As Curran and Runswick-Cole (2014, p. 1620) contend, professionals often perceive a disabled child’s impairments as ‘tragedy’, which distracts them from engaging and recognising the child beyond this negative view, a view communicated with authority to parents, and as Eagleton (2015, p. 40) captures, ‘[t]ragedy spurns all social hope’. Trisomy 21, commonly known in various grammatical variations of Down syndrome (being the Australian version), is a diagnosis frequently determined at birth (de Groot-van der Mooren et al. 2014, p. 954). A widely regarded American guide to paediatric students on discussing a Down syndrome diagnosis, now in its seventh edition, is that ‘parents of a newborn with Down syndrome should be provided with a balanced view of the condition’ (Roizen 2012, p. 315). While the newborn person and the diagnosed condition are not the same thing, they are often conflated within medical professionals’ understanding and communication of diagnosis to parents. The condition of Trisomy 21 has known medical and health risks, but the newborn as a unique human beyond this diagnosis maintains the possibility of a hopeful future. Medical knowledge relies upon the scientific method, where truth is produced from hypotheses that are not (yet) disproven. When the logic of the scientific method 306

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informs understanding of the baby with the diagnosis, a hopeless future life is also assumed to be known, proven, and needing to be communicated to parents. Roizen (2012, p. 317) asserts that if a child with Down syndrome undergoes ‘good’ selfdevelopment and early intervention, likely understood as interventions determined by medical professionals, they may secure a job in ‘supported employment’ as an adult. This brief supposition follows a detailed account of a multitude of medical risks. It offers a narrow focus on the value of a human life and asserts little hope for the future for a baby with Down syndrome. This assessment draws from outdated social facts generated by discriminatory attitudes and restricted opportunities, informing problematic expectations about the lives of children with Down syndrome that are nevertheless normalised and perpetuated by many medical professionals as legitimate within the social imaginary. Yet this assessment is delivered with equal authority to the legitimately expert, scientifically based knowledge of heart conditions. This problematic statement of future expectations implies little hope at all for this baby’s future. Even without such depressing estimations of low social capacity and achievement, the focus on the medical aspects of a baby’s diagnosis can be overwhelming for parents, as Gothard (2011, p. 111) explains: Down syndrome is not an illness. . . . Yet from the moment it is first recognised in a child, ‘Down syndrome’ is presented to parents bundled up in medical terminology. The condition, the diagnosis (which is usually delivered by a doctor or other health professional) and frequently the child itself, are ‘medicalised’. For parents, the medicalisation of their child can occur ‘[f]rom the moment of diagnosis . . . [when] they are often bombarded by information about negative health implications’ (Gothard 2011, p. 113). Karen Langley described her experience of this bombardment as a new mother to Gothard (2011, p. 114): ‘We were presented with a file and a list of about 362 medical things that could go wrong and we just shut it again’. The possible medical issues across the life of any child are endless, yet such medical cautioning is not imposed upon babies without disability. As interviewees quipped in a recent long read on Down syndrome in The Atlantic, if presented with such a list, ‘anyone would be scared’ and ‘[n]obody would have a baby’ (Zhang 2020, p. 49). This focus on possible health problems for babies with disability—and not babies without disability—emphasises future risk and implies a deficiency in babies with disability.

Natality—All Newcomers as Unique and Hopeful While much consideration of the human condition focuses on the fact that we age and die, Arendt (1958) argues that it is our natality, the fact that we are born, that is fundamental to the human condition. Our natality holds the uniqueness of every new person who is born and the potential they hold in their capacity to act and act 307

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in new ways, and Arendt emphasises that these factors of our natality are an enduring source of hope for humanity. For Arendt, plurality is central to this inherent hope within human natality. She describes plurality as the human condition of ‘living as a distinct and unique being among equals’ (1958, p. 178) so that we are not ‘endlessly reproducible repetitions of the same model’ (p. 8). Arendt proposes no exceptions to this condition and no caveats on the types of people whose births are more or less significant than others. Indeed, within her assertion that ‘each man is unique, so that with birth something uniquely new comes into the world’ (Arendt 1958, p. 178), we can interpret that newcomers with disability also bring something new and valuable to the world. This equality of all humans inherent within Arendt’s idea of natality accords with the human rights of people with disability. The purpose of the CRPD as captured in Article 1 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’. For children, a key principle of the CRC is that ‘children must not suffer discrimination irrespective of child . . . disability’ (Article 2). Article 7 of CRPD also addresses children with disability specifically and states that a child has the right to ‘full enjoyment of all human rights and fundamental freedoms’ equal to other children. An equality of hopefulness for a baby with disability as inherent within Arendt’s work would meet the human rights directive that babies with disability are equal to others. Through invoking this hopefulness, a child with disability’s ‘inherent dignity’ is also being respected. Arendt’s (1958, p. 8) conceptualisation of plurality is that human uniqueness is universal. She explains: Plurality is the condition of human action because we are all the same, that is, human, in such a way that nobody is ever the same as anyone else who ever lived, lives, or will live. This inherent human uniqueness is true for babies with a diagnosed disability as much as for the wider population, and Arendt’s emphasis on the universality of this quality affirms inclusion. The habitual denial of a possible hopeful future for babies with disability relies upon the assumption that a new baby is not unique, that this baby will be just like the others with the same diagnosis who have come before. Yet all babies with disabilities are unique, in the same way that all babies are unique. Even medically, to engage the terrain of medical professionals, children with the same diagnosis can have a range of associated impacts. This is especially so for syndromes, such as Down syndrome, which are characterised by having a range of impacts from which a person may hold some impacts but not others (Martin 2015). Beyond the medical, children with disabilities are all unique in their personhood, with differences including their personalities, their childhood interests, and their motivations, in other aspects of their identity—gender, race, religion, among others—and in their relationships. In these differences, all children with disabilities bring something valuable to the world, part of Arendt’s human pluralism. 308

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Medicalisation of Babies With Disability as Construction of ‘Waste(d) Lives’ In being understood as primarily a conglomeration of medical risks and deficits, babies with disability risk becoming what Zygmunt Bauman (2004) conceptualises as ‘waste lives’. Bauman describes the construction of ‘redundant humans’ as a brutal effect of modernity; those considered ‘excess of population’ who cannot be assimilated ‘into normal life patterns’ and be understood as ‘ “useful” members of society’. This ‘human surplus’ (2004, p. 70) is treated as waste, and some groups—such as asylum-seekers in Bauman’s example—may be removed and confined to places away from productive society. This removal is resonant of institutionalisation, when people with disability were removed from society and confined in asylums, often from birth. Bauman continues by theorising what happens when those considered ‘waste lives’ are no longer separated away, a situation now true for people with disability. A newborn with disability may now go home with its family rather than be removed to an asylum. Nevertheless, the assumption that this child does not have a hopeful future perpetuates their ‘waste(d) life’ status. Bauman (2004, p. 74) quotes Agier on refugees, that being assumed to be human waste means being ‘stripped of every single element of their identities except one’. Refugees are stripped of the ‘set of ordinary things . . . that carry meanings’ in everyday life, leaving them with nothing but a ‘naked life’ (Bauman 2004, p. 74). For babies with disability, this stripping away is not of tangible objects and activities of everyday life but of the imagined prospect of having them, which then jeopardises the prospect of the infant experiencing the ‘ordinary things’ of childhood. Agier considers whether the humanitarian worker operates as an ‘agent of exclusion’ despite also helping within the excluding system. In the same way, medical professionals can similarly be agents of exclusion who, sometimes in the first hours of a baby’s life, alongside providing important medical care, can strip away the idea of a hopeful future for this child. Bauman captures the essentialising process of becoming human waste as ‘[t]he act of assigning to waste puts an end to differences, individualities, idiosyncrasies. Waste has no need of fine distinctions and subtle nuances’ (2004, p. 75). When babies with disability are treated as ‘waste lives’, the requirement vanishes to recognise and communicate valid differences and possibilities between children with the same diagnosis, as stipulated in Article 3 of the CRPD. This reductive stereotyping means a child with disability is excluded from Arendt’s (1958) human plurality, where each brings something unique into the world.

Better ‘Truths’ to Create a Better World Pragmatic philosophy offers an illuminating lens through which to consider and challenge the medicalised duty-to-truth perspective imposed upon babies with disability. Pragmatic philosophy rejects the ‘traditional philosophical’ project (Rorty 1999, p. xvii) which focuses on what we can know as truth as no longer useful (Rorty 1999, p. xxii). Instead, Richard Rorty, the most well-known contemporary pragmatic 309

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philosopher, argues that we need to understand beliefs as verbal dispositions and ‘habit[s] of action’ that give us an ‘indication of a person’s future behaviour’. For Rorty, working out whether these beliefs represent reality is a waste of time. Even within pragmatic philosophy, Rorty takes an extreme position, reducing all truth to mere belief, whereby ‘to say that a belief is, as far as we know, true, is to say that no alternative belief is, as far as we know, a better habit of acting’. Through this approach, as Arendt, Rorty ultimately focuses upon the importance of human action. What matters for Rorty is what a belief will mean for how a person will act, so that the more useful question becomes, ‘For what purposes would it be useful to hold that belief?’ (1999, p. xxiv). Applying this question specifically to the medicalisation of babies and infants with disability, we can ask: What does the belief achieve that reduces them to a diagnosis and severs their connectedness to others and society as active agents, denying them of imagined hopeful futures? In response, firstly, the belief achieves a reinforcement of the importance and elite social status for medical professions and their medical ontology. A broader purpose served by this belief is that it contributes to ableist logics being maintained in society, where human value has become entangled with the economic priority of productivity. This entanglement is intensified within a contemporary neoliberal context, where independence as selfsufficiency is recognised and lauded as a valued human quality and relational interdependence is not (Goodley 2014, p. 28). Ultimately, the impact of this belief is that despite now growing up in everyday neighbourhoods, children with disability maintain Bauman’s ‘waste life’ status, as redundant humans of lesser value and to be feared. In disability communities, we understand that a better belief and ‘habit of acting’ is to treat people with disability with dignity and as equal to all others, in accordance with a human rights framework. Many medical professionals with their powerful authority impose the limiting belief that babies and infants with disability have futures with little hope onto the parents of a baby with disability. When this happens, parents must then shake off this belief to reclaim a fully human status for their child and to shape a different habit of thinking and resultant actions towards their child. Bauman (2004, p. 75) describes this process as ‘recycling’ a life deemed to be waste into ‘legitimate and acknowledged members of human society’. Jan Gothard (2011, p. 145) recounts her experience of being a new parent to Maddie, who was diagnosed with Down syndrome: When our daughter was born in 1992, and we learned that Down syndrome meant not just an intellectual disability but delayed physical development, one of our first questions to our paediatrician was, what about trying things like physiotherapy? His response was that we would hear a lot about what ‘these kids’ could achieve, and maybe physiotherapy might get them there a little faster, but ultimately, they would go as far as they were going to go and no further: so why bother? We accepted his advice uncritically and stoically—we had feared the situation was useless—but within days we learned with astonishment not only that a whole range of therapies was available under the rubric of early intervention, but that kids with Down 310

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syndrome were talking, reading and writing, swimming, dancing and doing gym, playing judo, netball, scrabble and musical instruments, graduating from high school. Here, the paediatrician reduced baby Maddie to a hopeless medical condition, a habit of thinking that shaped his opinion that investing in this child was wasted effort. Gothard’s (2011) realisation of possible hope and a hopeful future for her infant only arose once she rejected the belief as truth-position imposed upon her baby by medical professionals. Studies show that the grief and despair that parents experience about having a baby with disability, a response reinforced by medical experts focusing upon the negative, shifts over time. Parents can work through and against dominant narratives to a deeper and more empowered understanding of who their child is and what disability means for both the parents’ and the child’s life—not on a linear path towards an inevitable future, but ‘present and becoming’ (Fisher and Goodley 2007, p. 68). This hopefulness eventually claimed by parents reflects the position supported in disabled children’s childhood studies, which Curran and Runswick-Cole (2014, p. 1617) capture as ‘disabled children are not viewed as necessarily having problems or being problems, but as having childhoods’, so that all childhoods become understood as equally valuable. The early pragmatist William James theorised that ‘[t]ruth happens to an idea. It becomes true, is made true by events’ (1907, author’s emphasis, cited in Koopman 2006, p. 108). For people with disability, a significant contributor to their supposed limitations and incapacity becoming truth is how medical assertions mean they are treated. While the reality of medical issues such as heart problems cannot, and ought not to, be denied, the problematic truth that has developed from these issues is that medical concerns are the only important factors, are deterministic of lives without hope, and that this truth can be generalised across a group of people, many of whom are yet to be even born. ‘Pragmatism holds that true beliefs are sustained by the nourishing energy we give them—this reverses the pretence that the truth nourishes us’ (Koopman 2006, p. 111). Limiting ideas about babies and infants with disability are only perpetuated as truth because these ideas are fed, indeed, nourished, by many medical professions and others. However, there is a hopefulness in the idea that truth-beliefs need energy to sustain them, as it means that this truth about limited futures for babies with disability can be challenged and new beliefs can be installed and energised as truth. In this possibility we recognise the pragmatic philosophical foundation that it is ‘our efforts’ and not ‘truth’ that free us (Koopman 2006, p. 111). Gothard’s (2011) earlier account from the time of her daughter’s birth is now several decades old, and in this time, ableist truths about disability have been challenged across society, progressing disability rights and social inclusion. This wider social progress may have impacted upon the attitudes of some medical professionals. Indeed, Gothard’s (2011) more recent work finds a diversity of experiences in how medical professions portray an infant’s diagnosis and also in how varied approaches were received by parents, revealing much complexity: an overwhelming need for ‘information, support and services’ contrasted with feeling ‘swamped’ (Gothard 2011, 311

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p. 147). ‘Some parents . . . are outraged when told ‘not to worry’ about the disability, whereas others . . . find the advice helpful’ (2011, p. 157). Yet within this complexity, gravely negative attitudes persist so that further challenge is necessary. Pragmatism has been described as a philosophy of hope (Rorty 1999; Koopman 2006). As in Arendt’s (1958) work, pluralism is key to hopefulness in this approach, whereby ‘the world is dynamic and shifting. . . . The result is that things could always be different than they happen to be’ and that it is ‘our active contributions, interests, and purposes’ that shape our reality, so that ultimately, ‘we are capable of creating better worlds and selves’ (Koopman 2006, p. 107). This process is made explicit by Taylor (2004, p. 29), who describes how changes in socially shared assumptions and outlooks in the social imaginary will then infiltrate and transform our practices. Grassroots advocacy and activism in disability rights in the 1980s promoted ‘normalisation’ and drove de-institutionalisation from asylums (Hall and Kearns 2001), and current advocacy continues to push for more meaningful social inclusion, which indicates that, indeed, better worlds are possible and we are capable of creating them. Rorty’s (1999, p. 88) pragmatism encourages a ‘willingness to substitute imagination for certainty, and curiosity for pride’, an approach taken up by disability communities and a useful point of reflection for those in medical professions whose interactions with parents influence the possibility of hope for a baby’s imagined future. Demanding that infants with disability are entitled to imagined hopeful futures aligns with contemporary disability advocacy, which promotes having high expectations of a child with disability (e.g. Winter 2006). This position exemplifies the idea from pragmatic philosophy that better beliefs ought to be nurtured as truth, as they shape our actions, reshaping the social imaginary to create a better world. When this idea is applied to babies with disability—that they ought to be imagined as having futures of myriad possibilities—it may seem to be an act of charitable thinking. However, arguing that an infant with disability should be understood as having an imagined hopeful future is a demand for equal treatment so that all babies are understood as entities of hopeful possibility, regardless of whether or not they have a disability.

The Destructive Effects of the Denial of Hope The restrictive medical perspective often applied to babies with disability breaches their human right to equality, and it may also have tangible destructive effects. As the pragmatic philosophers emphasise, belief shapes action, and the denial of imagined hopeful futures for babies with disability frames these children as deficient. This negative framing may influence parental actions, contributing to a sense of urgency around developmental intervention, so that childhood becomes a period of early intervention where a program of therapy dislodges childhood as a time of joy, exploration, and wonder—that is, a time of being a child. With a child with disability understood as having problems rather than a childhood (Curran and Runswick-Cole 2014), childhood can become a therapeutic project, where allied health and other intervention become crucial for maximising an ableist idea of normality through 312

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diminishing the medically constructed deficits of the child, potentially overwhelming the space of ordinary childhood experience. As well as altering their experience of childhood, the potential messaging to a child with disability is that they belong in therapeutic settings, setting up an identification process as different and other, at risk of internalising a sense of being lesser. The denial of hope, as an imagined hopeful future for a baby with disability, can also have a destructive impact upon the child’s parents and family. It likely exacerbates the distress experienced by parents upon diagnosis. Professionals have significant influence on a family’s response to diagnosis. Alongside ‘[t]he timing, the words used, duration of verbal exchange, and the emotional support that professionals provide’ (Bartolo 2002, cited in Zajicek-Farber 2012, p. 660) is the level of hope that they communicate. This impact is ongoing, as parents have been found to be substantially influenced by the attitudes of the medical and disability services who are around them through the early years of their child’s life (Tait et al. 2016). For parents of a child with Down syndrome, hope is associated with having better intimate relationships, which in turn is associated with more effective parenting (Cless et al. 2018). Imposing hopelessness not only breaches the right of an infant with disability to equal treatment, but its potentially destructive impact on the family system can also cause further damage to the child’s development opportunities. Hope is addressed in the medical scholarship of nursing studies, where it is portrayed as ‘essential to resilience’ (Muir and Strnadová 2014, in Finke et al. 2019, p. 2050), ‘a strength-based concept’ with therapeutic power, and a ‘mobilizing’ force that is part of patient care. Hope is linked with self-efficacy and self-worth (Griggs, Baker and Chiodo 2019, p. 441), which connects hope to the human rights ideal of inherent dignity of the person as included in both the CRC (Articles 23, 28.2, and 37) and the CRPD (Article 1). Hope can also be understood as a political act whereby the future is envisioned as different to the present (Eagleton 2015, p. 54). It can have a positive impact on a patient’s psychological state and health outcome, whereas lower levels of hope have been correlated with depression and anxiety (Snyder 2002). Indeed, hope has a performative dimension, whereby ‘confidence in a particular future may help to usher it in’, whereas ‘[n]ot to behave as though there is hope may be to ensure that there isn’t’ (Eagleton 2015, p. 84). For parents of a child with developmental disabilities, hope has been connected with ‘subjective wellbeing’ and reduces ‘psychological distress’ (Shenaar-Golan 2016, p. 88). Hope as an ‘emotional motivator’ for parents can unfortunately be misunderstood by healthcare practitioners as parents being ‘out of touch with reality’, a disconnect which can diminish parents’ trust in healthcare professionals (Roscigno et al. 2012, p. 1232). However, hope can be ‘actively cultivated’ (Eagleton 2015, p. 58) by medical professionals, or it can be communicated to parents without being felt by the deliverer, for as Eagleton expresses it, ‘hopeful words remain hopeful words’ (2015, p56). When medical professionals focus by habit on possible limitations and not the imagined possibilities of babies with disability, they overlook the importance of the emotional needs of a family—who need to be empowered to support the development and rights of their child in an ableist society. However, another political dimension of hope is that it 313

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requires the relinquishing of power, as it implies not knowing (Eagleton 2015, p. 69), and this aspect of hope poses a challenge to the authority invested in medical ontology and the status of medical professionals. While the acknowledged importance of hope in medical scholarship is a good thing, the imagined hopeful futures of infants with disability must be understood and communicated through the social justice lens of disability rights and empowerment, which recognises people with disability as having dignified and valuable lives equal to those without disability. Without this human rights framing, hope for the future for an infant with disability can become distorted through ableism, as hope for passing as ‘normal’. Historically, child disability service systems were based upon ableist notions of bodily difference as lesser, a perspective which ‘might encourage parents to pursue overly aggressive treatment options and the often vain search for a cure’ (Borsay and Dale 2012, p. 10). More recently, parents in Kazakhstan have been found to engage unproven interventions and services in order to generate hope as a reaction against the ‘hopelessness’ they feel in the medical system around them (An et al. 2020, p. 1823). Similar practices continue in the United States and many other Global North societies, such as parents paying high sums for unproven and potentially dangerous supplementary medicine for their children with Down syndrome in the hope of improving their child’s cognitive functioning (Lewanda, Gallegos and Summar 2018). Beyond the potentially destructive effects upon the child and family, understanding infants with disability as without possible hopeful futures perpetuates the deep ableism within contemporary society. This destructive belief-as-truth assumed for babies with disability then contributes to making equal access and meaningful inclusion in society for people with disability more difficult. It may contribute to the broader fear of disability across society, for example, as something to which a pregnancy is ‘at risk’, which has led to selective termination rates for likely Down syndrome of over 90% in countries such as Australia (Maxwell, Bower and O’Leary 2015). If newborns with disability continue to be framed as Bauman’s (2004, p. 80) stereotyped ‘ “redundant” population’ who intermingle among the ‘ “useful” and “legitimate” rest’, rather than as one of Arendt’s (1958) unique newcomers of hope and potential, the barrier between a child with disability and their fundamental human rights to equality and dignity of the person has already been imposed. This human rights breach at birth can only make it more difficult for a child with disability’s other human rights to be met in their childhood and beyond.

Conclusion: The Possibilities for an Equality of Hopefulness Establishing imagined hopeful futures for babies with disabilities may seem an abstract, imaginary task, yet it is an important human rights issue, as it asserts the equality of all children from birth. Birth is a moment of hope, where, as theorised by Arendt (1958), a newcomer is understood as unlike anyone who has come before and will be capable of acting in the world in new ways. Yet the focus on (possible) medical problems for babies with disability under the veil of medical honesty removes the imagined hopeful future that is generated around an infant’s birth. This attitude 314

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portrays a baby with disability as a ‘waste life’ (Bauman 2004), without uniqueness or much capacity to act in their life, stripping away the inherent dignity of a child. Pragmatic philosophy asks what the purpose of a truth-belief is and whether a better one might enable us to create a better world. The medicalisation of babies with disability contributes to the wider ableism of society, where the questioned value of lives with disability lies within a broad social imaginary. It also affirms the high status of the medical professions. In an infant’s everyday life, the stripping away of the possibility of their imagined hopeful future may have a destructive impact upon parental well-being and shape an ableist approach to their new baby’s childhood. Yet previous disability activism suggests that better ways of thinking about babies with disability are possible through a human rights framework, and that this approach can create a better world. The equality that could be achieved for babies with disability if their imagined hopeful futures were sustained would not only meet their human right as an abstract notion. From this position, at the earliest moments of their life in the world, an early expectation would be established for equal respect and opportunities for children with disabilities with all others so that their possible futures remain open and hopeful. The value of investing time, energy, and resources into a child with disability would be clear, at the same time a child could be valued for who they are. From such a childhood, a child with disability may internalise their worth and their agency. While such positive childhoods may already be experienced for many children with disability, it may have required parents to first challenge and reject the negative medicalisation of their child by authoritative medical professionals and the ableist assumptions in the world around them. Arendt suggests that an intergenerational responsibility exists, whereby those already here ‘have the task to provide and preserve the world for . . . the constant influx of newcomers who are born into the world as strangers’ (1958, p. 9). This responsibility can be applied to medical professionals and other workers who are involved in the lives of babies with disability. People in these roles must engage Arendt’s (1958, p. 5) directive to ‘think what we are doing’, ensuring it is the child’s best interest to a life of hope and dignity, and not their own immersed interest in professional importance, that is driving their practices with babies with disability. Finding the balance between medical information and enabling hope is difficult (Bray 2015, p. 25), and the medical system can play a crucial role in the early life of a child with disability. However, making such a shift in outlook to equality can be achieved by recognising the whole child, not just their impairments, when babies with disability start their lives within a medical system. The human rights of babies with disability are a little considered point in the lifespan. Yet the entitlement of a baby with disability to an imagined hopeful future is an important point that follows the human rights concerns on selective termination for disability and precedes the complex of human rights issues for adults and older children with disability. Human rights principles and directives in the CRC and the CRPD emphasise the importance of equality for children with disability to all other children, of respect and the inherent dignity of each 315

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child, and of the need to prioritise the best interests of the child. The entitlement of babies with disability to imagined hopeful futures rests upon these human rights, establishing the foundation upon which their rights can be met through childhood and beyond.

A Letter to New Parents Dear new parent, Congratulations on your beautiful child who you have just brought into the world. What wonder and mystery it is to create a life. This precious bundle you now have in front of you, yours to love and to raise—a new member of your family. Or perhaps this precious child has made you a family—what a magical power. This little baby who is now in the world is a life with endless possibilities. They could be anything! They could be anyone! Just like any other newborn. They might be the first person to do something quite incredible. They might be a force that changes the whole world for the better. They may have a wonderful life with rich and deep connections with others. Maybe they will be the love of somebody’s life. This little one has all that magic, and none of us know what they will do with it. They hold so much hope, and you are the one who will get to see it unfold. How lucky you are. These are hopes you can hold. Your hopes might change as your child shows you who they are and what they want for themselves, like with any child. But today, look at your baby—and wonder at the little miracle they are, because they are truly wonderful. With love, From a mother

This chapter addresses the human rights dimension of how the lives of babies with disability are imagined with little hope by many medical professionals when compared to babies without a disability diagnosis. Many new parents across the world have experienced this as a destructive encounter. Some parents later responded by generating counter narratives, demonstrating that different beliefs are possible. Parents of children with Down syndrome have published resources that illuminate the positive experience of parenting their unique child. For example, #NobodyToldMe The Truth about Down syndrome (https://positiveaboutdownsyndrome.co.uk/nobodytoldme) lists positive counterpoints to scores of negative statements made by medical professionals about their baby’s health, their possible future, and their impact on family life. Similarly, in Australia, 21 Gifts is an initiative by parents partnering with hospitals, which delivers a small suitcase in hospital to new parents of a baby with Down syndrome. The case holds gifts and information that focus on celebration and hope, to ‘balance the medical discourse with the celebration of a new baby . . . to shift the focus . . . to the opportunities and the rollercoaster that is life itself ’ (https://www.twentyonegifts.com/). Other resources

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present hopeful and contemporary portrayals of life with Down syndrome, which counter the negative assumptions reproduced by some health and medical professionals about babies with Down syndrome. Worldwide, Down syndrome organisations publish factual resources online (e.g. https://www.globaldownsyndrome.org/about-down-syndrome/ facts-about-down-syndrome/). More creative resources also illuminate the beauty and dignity of people with Down syndrome, for example, in the photography and fashion project, The Radical Beauty Project (http://www.radicalbeautyproject.com/). Website references:

• • • •

https://positiveaboutdownsyndrome.co.uk/nobodytoldme https://www.twentyonegifts.com/ https://www.globaldownsyndrome.org/about-down-syndrome/f actsabout-down-syndrome/ http://www.radicalbeautyproject.com/

References An, S., Kanderzhanova, A., Akhmetova, A., Foster, F. and Chan, C. K. 2020. Chasing hope: parents’ perspectives on complementary and alternative interventions for children with autism in Kazakhstan. Autism: The International Journal of Research and Practice 24(7), pp. 1817–1828. Arendt, H. 1958. The human condition. 2nd edition. Chicago: The University of Chicago Press. Bartolo, P. A. 2002. Communicating a diagnosis of developmental disability to parents: multiprofessional negotiation frameworks: Communicating a diagnosis to parents. Child: Care, Health & Development 28(1), pp. 65–71. Bauman, Z. 2004. Wasted lives. Cambridge: Polity. Borsay, A. and Dale, P. 2012. Introduction: Disabled children—contested caring. In A. Borsay and P. Dale (eds.), Disabled Children: Contested Caring, 1850–1979. Milton Park: Taylor & Francis Group, ProQuest Ebook Central database, pp. 1–14. Bray, L. 2015. Parents’ experiences of hope following a child’s brain injury. Nursing Children and Young People 27(7), pp. 22–26. Brown, S. E. and Guralnick, M. J. 2012. International human rights to early intervention for infants and young children with disabilities: Tools for global advocacy. Infants and Young Children 25(4), pp. 270–285. Campbell, F. 2008. Refusing able(ness): A preliminary conversation about ableism. Journal of Media and Culture 11(3) [online] [Accessed on 14 April 2022] Available from: https:// journal.media-culture.org.au/index.php/mcjournal/article/view/46. Cless, J. D., Nelson Goff, B. S. and Durtschi, J. A. 2018. Hope, coping, and relationship quality in mothers of children with Down syndrome. Journal of Marital and Family Therapy 44(2), pp. 307–322. Convention on the Rights of Persons with Disabilities and Optional Protocol. 2006. [online] [Accessed on 14 April 2022.] Available from: www.un.org/disabilities/documents/convention/convoptprot-e.pdf. Convention on the Rights of the Child. 1989. [online] [Accessed on 14 April 2022] Available from: www.ohchr.org/en/professionalinterest/pages/crc.aspx Curran, T. and Runswick-Cole, K. 2014. Disabled children’s childhood studies: A distinct approach? Disability & Society 29(10), pp. 1617–1630.

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Belinda Johnson de Groot-van der Mooren, M., Gemke, R., Cornel, M. and Weijerman, M. 2014. Neonatal diagnosis of down syndrome in the Netherlands: suspicion and communication with parents. Journal of Intellectual Disability Research 58(10), pp. 953–961. Eagleton, T. 2015. Hope without Optimism. New Haven: Yale University Press. Finke, E. H., Kremkow, J. M. D., Drager, K. D. R., Murillo, A., Richardson, L. and Serpentine, E. C. 2019. I would like for my child to be happy with his life: Parental hopes for their children with ASD across the lifespan. Journal of Autism and Developmental Disorders 49(5), pp. 2049–2068. Fisher, P. and Goodley, D. 2007. The linear medical model of disability: Mothers of disabled babies resist with counter-narratives. Sociology of Health & Illness 29(1), pp. 66–81. Frizell, C. 2020. Learning disability imagined differently: An evaluation of interviews with parents about discovering that their child has down’s syndrome. Disability & Society 36(10), pp. 1574–1593. Goodley, D. 2014. Dis/ability studies: Theorising disablism and ableism. London: Taylor & Francis Group. Gothard, J. 2011. Greater expectations: living with down syndrome in twenty-first century Australia. Fremantle, Western Australia: Fremantle Press. Griggs, S., Baker, H. and Chiodo, L. M. 2019. Nursing student perceptions of hope in children: a qualitative descriptive study. Nursing Forum 54(3), pp. 441–447. Hall, E. and Kearns, R. 2001. Making space for the ‘intellectual’ in geographies of disability. Health and Place 7(3), pp. 237–246. Karp, H. 2012. The fourth trimester and the calming reflex: novel ideas for nurturing young infants, Midwifery Today 102, pp. 25–67. Kenny, R. W. and Andre, M. K. 2021. On the racial imaginary as a social imaginary. Symbolic Interaction. Early View Online Version. https://doi.org/10.1002/symb.577 Koopman, C. 2006. Pragmatism as a philosophy of hope: Emerson, James, Dewey, Rorty. The Journal of Speculative Philosophy 20(2), pp. 106–116. Lewanda, A. F., Gallegos, M. F. and Summar, M. 2018. Patterns of dietary supplement use in children with Down syndrome. The Journal of Pediatrics 201, pp. 100–105. Lid, I. M. 2015. Vulnerability and disability: A citizenship perspective. Disability & Society 30(10), pp. 1554–1567. Martin, E. 2015. Syndrome, Concise medical dictionary. 9th edition. Oxford: Oxford University Press. Maxwell, S., Bower, C. and O’Leary, P. 2015. Impact of prenatal screening and diagnostic testing on trends in Down syndrome births and terminations in Western Australia 1980 to 2013. Prenatal Diagnosis 35(13), pp. 1324–1330. Muir, K. and Strnadová, I. 2014. Whose responsibility? Resilience in families of children with developmental disabilities. Disability & Society 29(6), pp. 922–937. https://doi.org/10.108 0/09687599.2014.886555 Roizen, N. J. 2012. Down syndrome (Trisomy 21). In M. L. Batshaw, N. J. Roizen and G. R. Lotrecchiano (eds.), Children with disabilities. 7th edition. London: Brookes Publishing, ProQuest Ebook Central database, pp. 307–318. Rorty, R. 1999. Philosophy and social hope. London: Penguin Books. Roscigno, C. I., Savage, T. A., Kavanaugh, K., Moro, T. T., Kilpatrick, S. J., Strassner, H. T., Grobman, W. A. and Kimura, R. E. 2012. Divergent views of hope influencing communications between parents and hospital providers. Qualitative Health Research 22(9), pp. 1232–1246. Shenaar-Golan, V. 2016. The subjective well-being of parents of children with developmental disabilities: The role of hope as a predictor and fosterer of well-being. Journal of Social Work in Disability and Rehabilitation 15, pp. 77–95. Snyder, C. R. 2002. Hope theory: Rainbows in the mind. Psychological Inquiry 13(4), pp. 249–275. Tait, K., Fung, F., Hu, Aihua, H., Sweller, N. and Wang, W. 2016. Understanding Hong Kong Chinese Families’ Experiences of an Autism/ASD Diagnosis. Journal of Autism and Developmental Disorders 46(4), pp. 1164–1183.

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Babies with Disabilities and their Imagined Hopeful Futures Taylor, C. 2004. Modern social imaginaries. Durham: Duke University Press. Universal Declaration of Human Rights (UDHR). 1948. [online] [Accessed on 14 April 2022] Available from: www.ohchr.org/en/udhr/documents/udhr_translations/eng.pdf. Walmsley, J. and Jarrett, S. 2019. Intellectual disability in the twentieth century: Transnational perspectives on people, policy and practice. Bristol: Policy Press. Winter, J. 2006. Breakthrough parenting for children with special needs: Raising the bar of expectations. San Francisco: Jossey-Bass. Zajicek-Farber, M. L. 2012. Caring and coping: helping the family of a child with a disability. In M. L. Batshaw, N. J. Roizen and G. R. Lotrecchiano (eds.), Children with disabilities. 7th edition. London: Brookes Publishing, ProQuest Ebook Central database, pp. 657–672. Zhang, S. 2020. The last children of down syndrome, The Atlantic. [online] [Accessed on 7 February 2021] Available from: www.theatlantic.com/magazine/archive/2020/12/ the-last-children-of-down-syndrome/616928/

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18 IS DISABILITY A JUSTIFICATION TO UNDERMINE THE RIGHT TO LIFE? Begoña Rodríguez Díaz Introduction Is disability a justification to undermine the right to life? The answer to this chapter’s title might look self-evident, but it brings up a profound unsolved question: Why do so many legislators, prospective parents, and health practitioners consider that the presence of an impairment makes the life of an unborn child less desirable? Why do we affirm there is such an assumption? This chapter aims to provide some detail about the existing discrimination towards foetuses with disabilities precisely on grounds of their disability. It will focus on two countries, Spain and the UK, which are both signatories of the UN Convention on the Rights of the Child (1989) (CRC) and the UN Convention on the Rights of Persons with Disabilities (2006) (CRPD) and whose legislation allows wider conditions for termination of pregnancy when a foetal anomaly is detected. As the CRPD clearly states the prohibition of all discrimination on the basis of disability and the right to life ‘on an equal basis with others’, the objective of this chapter will be to consider how (if at all) it is possible to fully comply with this international commitment while simultaneously maintaining at a national level selective abortion legislation and practice which constitute discrimination on the basis of disability. The structure of this chapter reflects the experience of my own awareness process. Being a mum of a child with Down syndrome (DS) and personally experiencing the prejudice towards my child being born, I progressively discovered how far the discrimination towards unborn children with disabilities had reached into the legal system, the healthcare practice, and society as such. As a scholar, I questioned myself about its eventual contradiction with the CRPD. Hence, in the first part of this chapter, I present the context, pointing out discriminatory abortion legislation on grounds of disability, discriminatory healthcare 320

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practice, and presenting some figures regarding disability-selective terminations. These figures are essential to gain awareness of the importance of our topic. Secondly, this chapter assumes a legal approach to establish whether the domestic legal system and practice in Spain and the UK fully comply with the CRPD. For that purpose, I apply the treaty interpretation rules set out in the 1969 Vienna Convention on the Law of Treaties (herein after VCLT) to interpret Article 10 CRPD about the right to life, in the context of the whole CRPD and other international treaties on human rights, mainly the CRC.

Disability as Justification to Undermine the Right to Life The Legal State Spain The adoption of Act 2/2010 of 3 March 2010 on sexual and reproductive health and voluntary interruption of pregnancy was a turning point regarding abortion legislation in Spain. Before that, according to the Criminal Law from 1985, abortion was considered a crime unless there were special circumstances, one of them being the risk of ‘serious mental or physical disabilities’ in the foetus, where termination prior to the 22nd pregnancy week would not be considered punishable (Rodríguez Díaz 2019, p. 179). Since 2010, abortion is no longer considered a crime but a fundamental right within the fundamental rights concerning sexual and reproductive health (Art. 1, Act 2/2010) if performed within the first 14 weeks. In the case of a ‘risk of serious anomalies in the foetus’, the deadline to legally perform the abortion is extended up to 22 weeks, while there is no time limit when ‘an extremely serious and incurable illness is detected in the foetus’ (Art. 15). Act 2/2010 was contested before the Constitutional Court in June 2010 (appeal on the grounds of unconstitutionality 4523–2010). More than ten years later, no ruling has yet been reached.

United Kingdom The Abortion Act 1967 applies in Great Britain (England, Wales, and Scotland) from 1968. In Great Britain, a pregnancy may only be terminated if two registered medical practitioners have certified that they are of the opinion, formed in good faith, that at least one and the same ground for abortion in Section 1(1) of the Act exists, being one of them ‘that there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped’. The Human Fertilisation and Embryology Act 1990 amended the 1967 Abortion Act. It introduced a time limit on most abortions of 24 weeks of gestation but permitted termination at any gestation on grounds of serious foetal anomaly. This discrimination was recently challenged before the courts by a young woman with DS, Heidi Crowter (Sky News, 18 October 2020). The High Court of England and 321

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Wales dismissed her claim in September 2021 (Case No.: CO/2066/2020). Leaving aside some arguments made by the claimants about the contradiction with the European Convention on Human Rights (which has made clear that unborn children are not bearers of the ECHR rights), the Court barely analyses the contradiction with the CRPD and, in particular, with the prohibition to ‘all discrimination on the basis of disability’ (Art. 5.2) as ‘the UNCRPD has not been incorporated by Parliament into domestic law’ (paragraph 44). Let us recall that international law prevails over domestic legislation (Art. 27 of the VCLT). Hence, ‘the UK’s internal principle of parliamentary sovereignty has no bearing on the international legal effect of the UK’s international obligations’ (Butchard 2020, p. 4). Regarding Northern Ireland, the adoption of the Abortion (Northern Ireland) Regulations (2020) made abortion lawful unconditionally if performed within the first 12 weeks of the pregnancy. Beyond this limit, it is only lawful under certain circumstances, such as ‘severe foetal impairment and fatal foetal abnormalities without any gestational time limit’. Throughout this chapter, I use GB and UK indistinctly, as the international liability in case of an eventual breach of the CRPD falls on the UK regardless of the said breach taking place in all or part of its territory.

The Healthcare Practice For more than a decade, scholars have pointed out the influence of the medical professionals (Dixon 2008, p. 3) in the decision to terminate pregnancies of foetuses where impairments have been detected. However, healthcare professionals are not well trained on how to counsel under such circumstances (Jotkowitz and Zivotofsky 2010, p. 150). These authors highlight that one of the factors explaining the pressure experienced by expectant women towards termination in such cases is the concern for legal liability existing among physicians. This concern is understandable, as the judiciary tends to award damages in cases of ‘wrongful birth’ (Martínez-Pujalte 2016, p. 160).

Spain The routine pregnancy care system in Spain includes screening tests in the early weeks of the pregnancy. In some cases, a more invasive technique, such as amniocentesis, is required to get an accurate diagnosis. Also, non-invasive prenatal testing might be available as a less risky alternative whenever the foetus impairment is related to some chromosomal abnormalities. When the screening test for chromosomal abnormalities is offered, an informed consent form is provided, stating: ‘[T]he final goal of this test is to find out about the chromosomal integrity of my child and eventually to allow me to take up the Law of Voluntary Pregnancy Interruption’ (Informed Consent Protocol, ‘Programa de Cribado de Cromosomopatías’, Autonomous Community of Madrid, Hospital Puerta de Hierro, Madrid, p. 17, author translation). Although terminating the pregnancy in such cases is presented as a choice, the previous statement reveals that a life with a genetic disorder is considered more likely 322

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to be terminated as the presence of the foetus abnormality very often switches a wanted pregnancy into an unwanted one. Furthermore, the role of healthcare professionals in the said ‘switch’ is noteworthy: studies about women perceptions throughout their pregnancy reveal that medical professionals in Spain encourage termination of foetuses diagnosed with DS in half of the cases and even try to actively persuade expecting mothers towards an abortion in a minority of cases (Vargas Aldecoa 2016, p. 238). Hence, I argue that disability is used as a justification to undermine the right to life.

United Kingdom Screening tests in pregnancy in Great Britain are not compulsory. If they are performed and their results show a high likelihood of a certain condition, diagnostic tests will be offered to confirm the condition. The same assumption about the close relationship between the finding of a ‘condition’ and the decision to end the pregnancy can be found within the NHS’s practice: ‘If diagnostic tests show your baby has a condition, this can lead to a decision about whether you want to continue or end the pregnancy’ (NHS 2021). Furthermore, better implementation of screening tests is expected to result in an increase in diagnosis of different abnormalities, ‘which will lead to more women being offered an earlier surgical termination of pregnancy’ (Royal College of Obstetricians and Gynaecologists -RCOG- 2010, p. 21, my emphasis). Evidence submitted to an independent parliamentary inquiry in 2013 confirmed the bias towards termination of pregnancies if a child is likely to be disabled (Inquiry on Abortion on the Grounds of Foetal Abnormality in England and Wales, March 2013, pp. 30–31). Abortion is routinely offered even in the case of minor defects, far from what legislation requires about a substantial risk of serious disability (House of Common Debates, UK Parliament, Hansard Volume 174, column 1190, 21 June 1990).

How Big an Issue Is This? Abortion based on foetal conditions is legal in over 80 countries (World Health Organisation 2021). While some of them ‘provide a limited list of conditions or specify a single foetal condition for which abortion is lawful’, the majority of them (51%) present no restriction as to the type of foetal condition (Lavelanet et al. 2018). In Europe ‘there are between 16 and 18 States which provide for differential gestational limits on the grounds of serious foetal abnormality. There are 31 States which legislate in some way for abortion to be permitted on grounds of foetal abnormality’ (UK, High Court of Justice, Case No: CO/2066/2020, 23 September 2021, paragraph 30). Reliable figures about terminations of pregnancy for foetal anomaly (TOPFA) following prenatal diagnosis are not easily available. In Europe, although EUROCAT provides the rate of TOPFA per 1,000 births, some states recognise real figures are higher than official ones. Aware of these difficulties, I analyse some figures regarding 323

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the countries where our study is focused on and also an insight in one of the most common ones: TOP following a diagnose of trisomy 21. A study carried out in 12 European countries analysing data from 2000 to 2005 showed that the rate of TOPFA before 24 weeks was 3.4 per 1,000 births, while there was a significant variation in the prevalence of TOPFA at 24 or more weeks between countries (Garne et al. 2010, p. 660). In the UK, the total prevalence of TOPFA per 1,000 births was 5.28 in 2008–2012 (Eurocat 2008–2012), rising to 5.846 in 2018 (Eurocat 2011–2018). According to Lafarge et al. (2017, p. 2), the increase in the number of TFAs (a total of ‘3213 in 2015 compared to 2085 in 2009’) is largely due to new screening technologies that enable earlier foetal abnormality detection. The British Pregnant Advisory Service (2022) in England and Wales recognised that the real figure of abortions for foetal anomaly is higher than the official one. There are about 2,700 TOPFA recorded each year under Ground E. However, this is an undercount, as very often there are other primary indications, ‘such as concerns for a pregnant woman’s health, which means that abortion is recorded under Ground C’. In Spain, total prevalence of TOPFA per 1,000 births was 2.464 in 2011, rising steeply to 8.216 in 2017 (Eurocat 2011–2017). However, official data from the Health Ministry (Ministerio de Sanidad, Consumo y Bienestar Social 2021) show that TOPFA in 2011–2019 represents percentages fluctuating between 3% and 4% of the overall TOP rate (3,200 to 3,800 TOPFA yearly). Perhaps one of the most paradigmatic cases regarding TOP for a foetal anomaly is trisomy 21 (Down syndrome). Globally, abortion rates are 60–90% after a DS diagnose. While in the United States, the rate is around 65–75%, it reaches 90% in England and France, 95% in Spain, and almost 100% in Iceland (Rodríguez Díaz 2019). These figures should help us gain awareness of the importance of our study: Why is disability being used to undermine the right to life?

Is There Any Infringement of the CRPD? In order to establish whether Spain and/or the United Kingdom is breaching the CRPD and its Article 10 in particular, we need to analyse the wording and scope of this article. Interpreting international treaties ‘is known to be one of the most difficult and contradictory issues on the applier’s agenda’ (Linderfalk 2007, p. 1), even if the 1969 VCLT provides three articles on the interpretation of treaties. Following Rodrigo and Abegón (2017), I support a holistic interpretation of the CRPD together with other international treaties protecting general interests of the international community. My aim is to apply the general rule of interpretation (Art. 31.1 VCLT), that is, the literal interpretation, completed with the context of the treaty, its object, and its purpose. Secondly, I consider (as required by Article 31.3) any subsequent agreement between the parties regarding the interpretation of the treaty or the application of its provisions, any subsequent practice in the application of the treaty which establishes the agreement of the parties regarding its interpretation, and any relevant rules of 324

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international law applicable in the relations between the parties. Finally, I look up the supplementary means of interpretation set out in Article 32 of the VCLT.

The Literal Interpretation States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others. (Art. 10 CRPD) The use of the term ‘reaffirm’ is consistent with core human right treaties, although, as Schulze points out, ‘this verb is usually used in preambular language rather than body text’ (Schulze 2009, p. 57). ‘Every human being has the inherent right to life’: this statement, as it is drafted, makes no distinction between a human being before or after birth. To deny the human condition to an unborn child or an embryo has no scientific consistency, as J. Lejeune testified at a US Congressional hearing in April 1981: ‘The human nature of the human being from conception to old age is not a metaphysical contention. It is plain, experimental evidence’ (Lejeune 1981). I explore the scope of the right to life as interpreted by the different human rights treaty bodies further down. ‘Shall take all necessary measures to ensure its effective enjoyment’: in the case of the CRPD, the obligation to adopt positive measures is fully described in Article 4 of the Convention, including protecting and promoting the human rights of persons with disabilities in all policies and programmes. According to Schulze (2009 p. 57): [T]he term ‘ensure its effective enjoyment’ deviates from the standard clauses on the right to life. This may be interpreted broadly, the main cause for the formulation is the fact that regularly the lives of persons with disabilities are under threat because others think their lives are not ‘worth living’. ‘By persons with disabilities on an equal basis with others’: the term ‘person with disabilities’ is defined in Article 1 of the CRPD, which emphasises the interaction between the impairments and the existing barriers and so assumes the social model of disability. Following A. Palacios (2010), we consider irrelevant the fact that a foetus might not be considered a ‘person’ under domestic law (as it happens in Spain and the UK). The CRPD forbids not only discrimination towards persons with disabilities but also ‘any discrimination on the basis of disability’, which considerably enlarges its scope (Palacios 2010, p. 55). Finally, the expression ‘on an equal basis with others’ is consistent with the purpose of the CRPD Article 1 and with the principle of ‘non-discrimination’ that must permeate the whole Convention (Allain 2009, p. 21). Consequently, ‘in every stage of the life of the human being, also prenatal life, equal treatment concerning its protection should be granted’ (Rodríguez Díaz 2019, 325

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p. 185): the conditions to legally terminate a pregnancy must be the same whether the foetus has or has not got an impairment (Palacios 2010, pp. 56–57). This is consistent with the CRPD Committee (CRPD/C/GBR/CO/1, 3 October 2017, paragraph 13) stating that: ‘Women’s rights to reproductive and sexual autonomy should be respected without legalizing selective abortion on the ground of fetal deficiency’ (author’s emphasis). In conclusion, the literal interpretation of Article 10 of the CRPD confirms the CRPD Committee understanding: ‘Laws which explicitly allow for abortion on grounds of impairment violate the CRPD’ (CRPD Committee. 2018. ‘Comments on the draft GC 36 of the Human Rights Committee on article 6 of the International Covenant on Civil and Political Rights’). Furthermore, healthcare programmes or practices instilling any prejudice on the basis of impairments noticeable before birth also violate the CRPD, as states must ensure the removal of any discriminatory practice (Art. 4b), whether it comes from public authorities (Art. 4d) or private organisations (Art. 4e).

The Context Article 31.2 of the VCLT clarifies what the ‘context’ for the purpose of a treaty shall comprise. As Allain (2009, p. 6) highlights: ‘Interpreting “in context” requires that one read the specific provision in light of the overall treaty’. He further explains (p. 21–22): The CRPD requires that via the context which points to the object and purpose that those interpreting the Convention not lose sight of the overarching obligations of States and the rights of persons with disabilities. Reading Article 10 of the CRPD in light of the overall treaty means having in mind Article 3b, where non-discrimination is one of the General Principles; Article 5.2, which prohibits ‘all discrimination on the basis of disability’; and Article 4, establishing the obligations of the states parties in ensuring persons with disabilities enjoy all human rights without ‘discrimination of any kind on the basis of disability’. Thus, the text of the treaty (as part of its context) confirms the interpretation resulting from the ordinary meaning of its terms. The 1969 VCLT (Art. 31.2) mentions the Preamble of a treaty as part of its context regarding interpretation. I argue that the Preamble of the CRPD confirms our literal interpretation: not only does it refer to ‘the inherent dignity and worth and the equal and inalienable rights of all members of the human family’ (paragraph 1), but it also mentions ‘birth’ within the grounds leading to multiple or aggravated forms of discrimination. Unborn children presenting impairments noticeable before birth are subject to discrimination on the basis of their disability. The ‘context’ of a treaty includes ‘any agreement relating to the treaty which was made between all the parties in connection with the conclusion of the treaty’. Therefore, we should mention the Optional Protocol, which has been ratified 326

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both by Spain and the United Kingdom, giving the Committee competence to examine individual complaints regarding alleged violations of the Convention by states parties to the Protocol. This Protocol neither confirms nor contradicts our literal interpretation, but its ratification by Spain and the UK shows their commitment towards the obligations assumed under the CRPD and regarding the role of its Committee. Lastly, the context includes any instrument ‘which was made by one or more parties in connection with the conclusion of the treaty and accepted by the other parties as an instrument related to the treaty’. There were no reservations or interpreting observations concerning Article 10 of the CRPD, only one declaration coming from the Netherlands, not objected by any state, claiming that the term ‘human being’ is a matter of national legislation, as interpreted by the ECHR. This does not contradict our interpretation, as we are arguing that once national legislation protects the life of unborn children, it should offer the same conditions to ‘human beings’ whether they have disabilities or not.

The Object and Purpose of the Treaty Although some scholars have underlined the uncertainty resulting from the application of the ‘concept of “object and purpose” in the law of treaties’ (Gardiner 2008, p. 19), we consider with Allain (2009, p. 7) that the teleological approach has been privileged in the case of the CRPD: [T]he negotiating States sought to give voice to a reading of the Convention which gives more emphasis to the teleological approach to treaty interpretation by requiring a reader of the Convention to, after having taken into consideration the ordinary meaning of the a word or phrase, to move directly to consider via Articles 1, 3, and 4, the ‘object and purpose’ as contextualising one’s interpretation, that is as reading the text ‘in context’. Following Allain and having in mind the object and purpose of the CRPD (Art. 1, 3, and 4) as explained supra (the context of the treaty), we conclude that the object and purpose of the CRPD confirm the interpretation resulting from the ordinary meaning of its terms.

Further Criteria Within the General Rule of Interpretation (Art. 31.3 VCLT) Article 31.3 refers to the ‘authentic interpretation’, that is, the interpretation made by the treaty authors, whether it is expressed in a subsequent agreement or in ‘any subsequent practice in the application of the treaty which establishes the agreement of the parties regarding its interpretation’. There is no subsequent agreement between the parties. 327

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Regarding the practice, and being all appliers of a treaty, ‘potential creators of practice’ (Linderfalk 2007, p. 167), including the states parties and the non-state organ entrusted with its application, we’ll focus on the practice of the CRPD Committee, which is the body of independent experts which monitors implementation of the Convention by the states parties. It examines the reports submitted by the states parties and forwards recommendations, in the form of Concluding Observations, to the state party concerned. The CRPD Committee has adopted Concluding Observations relevant to our study precisely addressed to the two countries I am focusing on. In the case of Spain, the CRPD Committee (CRPD/C/ESP/CO/1, 19 October 2001, paragraph 17) noticed that ‘time limits for abortion are extended if the foetus has a disability’ and so recommended that ‘the State party abolish the distinction made in Act 2/2010 in the period allowed under law within which a pregnancy can be terminated based solely on disability’ (author’s emphasis). A few years later, the CRPD Committee (CRPD/C(ESP/CO2–3, 13 May 2019), addressing itself to Spain, recommended again to: (b) Abolish any distinction made in law to the period within which a pregnancy can be terminated based on a potential fetal impairment . . . as such provisions contribute to the stigmatization of disability, which can lead to discrimination [author’s emphasis]. Regarding the United Kingdom, the CRPD Committee (CRPD/C/GBR/CO/1, 3 October 2017, paragraphs 12 and 13) expressed its concerns about societal prejudices considering lives of persons with disabilities less worthy and about TOPFA being available at any stage of the pregnancy and so recommended that ‘the State party amend its abortion law accordingly. Women’s right to reproductive and sexual autonomy should be respected without legalizing selective abortion on the ground of fetal deficiency’ (author’s emphasis). Similar recommendations have been made to other states parties of the CRPD, such as Hungary (CRPD/C/HUN/1, 22 October 2012). A ‘practice’ can consist of any number of applications, one or two or many—just as long as they ‘establish the agreement of the parties regarding its interpretation’ (Linderfalk 2007, p. 166). Consequently, the ‘subsequent practice’ in the application of the CRPD confirms our literal interpretation. Finally, Article 31.3 refers to ‘any relevant rules of international law applicable in the relations between the parties’. Pauwelyn and Elsig (2012, p. 457) underscore that the systemic interpretation is not uncommon. It is considered especially necessary in case of treaties protecting general interests of the international community (Rodrigo and Abegón 2017, p. 179). Therefore, we consider appropriate to compare the interpretation of the right to life, the right to non-discrimination, and the rights of children with disabilities made by the different bodies in charge of the implementation of the relevant treaties (CRPD, CRC, CCPR) and to analyse any eventual contradictions. 328

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On one hand, the Human Rights Committee (HRC) adopted in 2018 the General Comment (GC) 36 about Article 6, the right to life (ICCPR), replacing GC No. 6 and No. 14: The right to life . . . is most precious for its own sake as a right that inheres in every human being, but it also constitutes a fundamental right, the effective protection of which is the prerequisite for the enjoyment of all other human rights [my emphasis]. 3. The right to life is a right that should not be interpreted narrowly. It concerns the entitlement of individuals to be free from acts and omissions that are intended or may be expected to cause their unnatural or premature death, as well as to enjoy a life with dignity. Article 6 of the Covenant guarantees this right for all human beings, without distinction of any kind [my emphasis]. These paragraphs seem to interpret Article 6 of the CCPR in line with the very terms of Article 6.1 of the CCPR (‘every human being has the inherent right to life’), being Article 6 of the CRC consistent with it (‘every child has the inherent right to life’). Furthermore, Article 6.5 of the CCPR prohibits to carry out sentences of death on pregnant women: this protection of the unborn child is consistent with the Preamble of CRC, which points out the need of special protection of the child, ‘before as well as after birth’. However, the wording of the HRC is somehow conflicting, as it allows domestic measures regulating termination of pregnancy and encourages states parties to provide legal and safe abortion (paragraph 8) while at the same time considers that ‘Article 6 of the Covenant guarantees this right for all human beings, without distinction of any kind’ (paragraph 3) and, thus, not differentiating between born or unborn human beings. This contradiction surpasses our object of study as we are only focusing on the eventual discrimination towards unborn children with disabilities. In this regard, I underline that the term discrimination as used in the CCPR (Art. 2.1) has been defined by the HCR (GC t n. 18, non-discrimination) as: [A]ny distinction, exclusion, restriction or preference which is based on any ground such as race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status, and which has the purpose or effect of nullifying or impairing the recognition, enjoyment or exercise by all persons, on an equal footing, of all rights and freedoms. Although it does not mention disability within the discriminatory grounds, it is not an exhaustive list. Also, GC 18 simply clarified that ‘when legislation is adopted by a State party, it must comply with the requirement of article 26 that its content should not be discriminatory’ (paragraph 12). The CRC Committee (2006) (GC9, the rights of children with disabilities, paragraph 31) gives particular attention to the inherent right to life of children with disabilities since in many countries there are practices that compromise this right: the prejudice existing against them make them more vulnerable to infanticide. 329

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The CRC Committee (2006) noted the existing prejudice towards children with disabilities. Surprisingly, the HRC assumed this same prejudice in its draft version of GC 36, where it established that safe and legal abortion should be provided ‘most notably where the pregnancy is the result of rape or incest or when the foetus suffers from fatal impairment’ (paragraph 9, my emphasis). The CRPD Committee reacted, proposing to delete these examples. Laws which explicitly allow for abortion on grounds of impairment violate the CRPD (Art. 4,5,8). Even if the condition is considered fatal, there is still a decision made on the basis of impairment. Often it cannot be said if an impairment is fatal. Experience shows that assessments on impairment conditions are often false. Even if it is not false, the assessment perpetuates notions of stereotyping disability as incompatible with a good life (my emphasis). CRPD Committee (2018) ‘Comments on the draft GC No36 of the HRC on article 6 of the International Covenant on Civil and Political Rights’. In its final version, HRC GC 36 (2018) removed the term ‘when the foetus suffers from fatal impairment’ and redrafted paragraph 9, encouraging safe and legal abortion ‘where the pregnancy is not viable’. We can observe colliding views within UN bodies in charge of monitoring the implementation of international treaties of human rights. On one hand, the Committee Against Torture (in line with the HRC) has considered situations where ‘continuation of the pregnancy is likely to cause severe physical and mental anguish and distress, namely, in cases of fatal fetal abnormality’ and, consequently, has recommended to ensure access to abortion ‘in cases of fatal foetal impairment’ (CAT/C/ GBR/CO/6, Northern Ireland, para. 46.7, June 2019), which is similar to the HRC view ‘where the pregnancy is not viable’. On the other hand, the Committee on the Elimination of Discrimination Against Women (CEDAW) has an intermediate position. While it recommends abortion laws to include legal abortion on grounds of ‘severe foetal impairment, including FFA’, it highlights the need of not ‘perpetuating stereotypes towards persons with disabilities and ensuring appropriate and ongoing support, social and financial, for women who decide to carry such pregnancies to term’ (CEDAW/C/OP.8/GBR/1, 23 February 2018, p. 19). Hence, the CEDAW supports the CRPD view and both consider that: ‘Health policies and abortion laws that perpetuate deep-rooted stereotypes and stigma undermine women’s reproductive autonomy and choice, and they should be repealed because they are discriminatory’ (CEDAW and CRPD Joint Statement, guaranteeing sexual and reproductive health and rights for all women, in particular women with disabilities, 29 August 2018), which confirms the literal interpretation made supra.

Supplementary Means of Interpretation (Art. 32 VCLT) Article 32 of the VCLT allows recourse to supplementary means of interpretation (preparatory work of the treaty and circumstances of its conclusion) either to confirm the literal interpretation of Article 31 or when it has led to ambiguous or absurd 330

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results. As the result of applying Article 31 (the literal interpretation) is consistent and reasonable, we’ll refer to supplementary means of interpretation to confirm the said interpretation.

Preparatory Works General Assembly Resolution 56/168 of 19 December 2001 established an Ad Hoc Committee ‘to consider proposals for a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities’. The Ad Hoc Committee decided to establish a Working Group (Report of the Ad Hoc Committee, A/58/118) which should prepare a draft text of a convention to be negotiated by member states. If existing, it should present textual options reflecting alternative approaches. The Working Group draft made the following provision regarding the (then) Article 8: ‘States Parties reaffirm the inherent right to life of all persons with disabilities and shall take all necessary measures to ensure its effective enjoyment by them.’ As a footnote, it included: ‘There were different views expressed within the Working Group as to whether the Convention should include an article on the right to life, and if so, its content.’ The polemic question was if the Convention could cover or not the rights of an unborn disabled child. Some delegations, such as the EU and China, did not support this inclusion, because of the lack of international consensus regarding the protection of prenatal life. Other delegations, mainly led by Colombia, considered that abortion on grounds of disability should be expressly prohibited to prevent eugenic legislation and practice. Regarding the NGOs participating in the Working Group, they widely supported the later view. Within them, Inclusion International highlighted the risk that prenatal testing for disability presents for persons with disabilities. Society might soon be making a distinction between lives worth living and those not worth living. This is not an argument about a women’s right to choice, it is about ‘our right’ to be born and to be to be different. The presence of a disability must not be allowed to become a justification for the termination of life, nor must a disability justify changing the genetic make-up of a person [my emphasis]. (Daily Summary related to Draft Article 8 RIGHT TO LIFE, prepared by Landmine Survivors Network, January 2004) Eventually, the Ad Hoc Committee (seventh period of sessions, A/AC.265/2006/2) included an article on the right to life, recounting that: ‘There was general agreement to add, at the end of the draft article, the words “on an equal basis with others.” ’ Consequently, we consider that the preparatory works of the CRPD reinforce the 331

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interpretation done supra, in the sense that a child with disabilities should enjoy their right to life on the same terms as any other child, including prenatal life.

Circumstances of the Conclusion of the CRPD The circumstances of the conclusion of an international treaty cover both contemporary circumstances and historic precedents (Moyano Bonilla 1985). Historically, the promotion of the rights of the persons with disabilities under different international treaties has been linked to initiatives from the global disability movement pushing to achieve the ‘equalization of opportunities’ (UN World Programme of Action Concerning Disabled Persons 1982) and some attempts to transform the disability issue from a ‘social welfare’ issue to that of ‘integrating the human rights of persons with disabilities in all aspects of development processes’. Regarding the preparation of the CRPD, two circumstances must be underlined because of their great influence: the participation of persons with disabilities in the negotiating process and the shift from the medical model to the social model of disability that permeates the whole CRPD. On one hand, the involvement of representative organisations of persons with disabilities in the drafting phase was one of the most vigorous demands of the disability movement, under the motto ‘nothing about us without us’. We have already pointed out the great concern existing among persons with disabilities towards the consideration of a life with a disability as less worth living. They consequently widely stood up for their ‘right to be born and to be different’. On the other hand, the CRPD left out the medical model approach and adopted the social relational model of disability, which is made evident in the definition of ‘persons with disabilities’ (Art. 1 CRPD), highlighting the barriers over the impairments (the neglection of which has been regretted by Shakespeare and Watson 2001, among others). Barriers faced by unborn children with impairments noticeable before birth consist of discriminatory laws and discriminatory practice (laid on stigma on the basis of their impairment) that prevent them from enjoying their right to life ‘on an equal basis with others’. We should keep in mind the human rights approach. Lawson and Becket (2021) underscore the complementarity of the social and human rights models. They argue that they both are valuable tools with different purposes. For the purpose of this chapter, the prescriptive nature of the human rights model seems most appropriate since ‘it provides a detailed road map for the development of human-rights-consistent law and policy’ (Lawson and Becket 2021, p. 371). Any law reform must be compliant with human rights and principles and obligations, as set out in the CRPD. The CRPD not only forbids any discrimination ‘on the basis of disability’ but also compels the signatory states to ‘take all appropriate measures to eliminate discrimination on the basis of disability’ (Art. 4). Providing an extended deadline to perform an abortion in cases where the foetus carries an impairment can no longer be justified on the economic burden associated with raising a child with a disability (as the Spanish Constitutional Court did when it 332

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first decriminalised abortion on grounds of foetal impairment, Constitutional Court 153/1985) because economic considerations do not suffice to limit a fundamental right (De Asís 2016) under the human rights paradigm. Therefore, having analysed the supplementary means of interpretation (Art. 32 VCLT), we conclude that they confirm our literal interpretation.

Conclusion Following the VCLT, the CRPD must be interpreted as forbidding domestic abortion law containing discriminatory provisions on grounds of a foetus anomaly. Disability should never be a justification to undermine the right to life. However, to prevent the aforementioned discrimination, it will not suffice to remove discrimination on the legal field. Why? First, it is reasonable to presume that many such pregnancies would still be terminated under other existing provisions (UK Department of Health, commentary on 2015 abortion statistics), as it is already happening in the UK, where many TOPFA were conducted on other grounds, mainly that of injury to the mental health of the pregnant woman (UK Parliamentary Debates, Abortion Disability (Equality) Bill, volume 774, 21 October 2016, column 2253). Besides, prenatal testing vastly allows to confirm the presence of a foetal disability within the general deadline to legally terminate. States parties of the CRPD, such as Spain and the UK, are bound not only ‘to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities’ (Art. 4.1b) but also ‘to take all appropriate measures to eliminate discrimination on the basis of disability’. Regarding the object of this study, there is a wide area of improvement to fully comply with the CRPD. Specifically, Women Enabled International (2020) pointed at the need to re-educate the public, including prospective parents, about disabled people’s lives. Regarding DS, studies have shown that the main reasons prospective parents hold when terminating a pregnancy after a DS diagnose (Korenromp et al. 2007) clash with the actual experience of people with DS and their families (Skotko et al. 2011a, 2011b, 2011c). How et al. (2019) underscore the huge contrast between expectations and reality. Therefore, a balanced communication of the diagnosis plays a vital role (Flórez 2017). Disabled scholars argue that when a woman decides to abort a disabled foetus, she is not so much choosing as being constrained to take such a decision (Morris 1991, p. 66) as the ‘context in which reproductive decisions are made, undermines the capacity for free choice and promotes eugenic outcomes’ (Shakespeare 1998, p. 666). Health professionals should be educated on providing unbiased info about a foetus condition, ensuring their life is as valued as any other one. Regarding the so-called ‘burden’ of parenting children with disabilities, it refers to the excessive burden in terms of additional time, financial, and emotional resources needed to support the child (Barnes, Mercer, and Shakespeare 2003). This argument can be found in court rulings awarding damages for ‘wrongful birth’. Such ‘burden’ 333

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is the effect of disability-related stigma and of the lack of enough affordable and locally available support for people with disabilities and their families (Women Enabled International 2020, p. 13). This is what prevents their full inclusion in society and the full enjoyment of their rights, on an equal basis with others. Financial support should be granted to parents of children with disabilities not because they failed to terminate their pregnancy because of a late or wrong prenatal diagnosis but so they are able to care for their child without barriers and to ensure their full inclusion in society. Lastly, as states parties of the CRPD are bound to combat stereotypes about persons with disabilities by promoting ‘positive perceptions and greater social awareness’, we consider that they should play a role in preventing and even penalizing stigma. Much has been done for children with disabilities in the last 15 years. Although they still face considerable challenges to fully participate in society, we argue that the main one is the protection of their right to life on an equal basis with others. Without it, they might achieve great success in the coming years, but only the ‘lucky few’ allowed to be born will enjoy them. As a conclusion, I argue that disability is being used as a justification to undermine the right to life. Nevertheless, removing disability-related discriminatory provisions from abortion laws shall not suffice. A well-rounded strategy is required, including fighting against stereotypes, training healthcare professionals, reviewing the communication of a diagnosis process, and raising awareness about how every life is equally worthy regardless of the presence of an impairment. Persons with disabilities are expected to play a role in monitoring the implementation of the CRPD. Unborn children with disabilities need a voice, though. This chapter aims to give them one.

Over 80 countries allow or permit abortion based on a foetal condition (Global Abortion Policy Database, WHO). While some of them ‘provide a limited list of conditions or specify a single fetal condition for which abortion is lawful’ the majority of them (51%) present no restriction as to the type of foetal condition (Lavelanet et al. 2018). Laws which explicitly allow for abortion on grounds of impairment violate the Convention on the Rights of Persons with Disabilities (Art. 4,5,8). Even if the condition is considered fatal, there is still a decision made on the basis of impairment. Often it cannot be said if an impairment is fatal. Experience shows that assessments on impairment conditions are often false. Even if it is not false, the assessment perpetuates notions of stereotyping disability as incompatible with a good life. CRPD Committee (2018) ‘Comments on the draft General Comment No36 of the Human Rights Committee on article 6 of the International Covenant on Civil and Political Rights’.

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The inherent right to life, survival and development is a right that warrants particular attention where children with disabilities are concerned. In many countries of the world children with disabilities are subject to a variety of practices that completely or partially compromise this right. CRC Committee (2006), General Comment 9, The rights of children with disabilities, para 31. ‘This is not an argument about a women’s right to choice, it is about “our right” to be born and to be to be different’ (Inclusion International, January 2004). https://www. un.org/esa/socdev/enable/rights/wgsuma8.htm

References Abortion Act. 1967. [online] [Accessed on 1 November 2021] Available from: www.legislation.gov.uk/ukpga/1967/87/contents Abortion (Northern Ireland) Regulations, The. 2020. [online] [Accessed on 1 November 2021] Available from: www.legislation.gov.uk/uksi/2020/345/contents/made Act. 2/2010. on sexual and reproductive health and voluntary pregnancy interruption [Ley Orgánica 2/2010, de 3 de marzo, de salud sexual y reproductivay de la interrupción voluntaria del embarazo] [online] [Accessed on 10 November 2021] Available from: www.boe.es/buscar/ act.php?id=BOE-A-2010-3514 Allain, J. 2009. Treaty interpretation and the united nations convention on the rights of persons with disabilities. Legal Report 2. Belfast: Centre on Human Rights for People with Disabilities. Barnes, C. Mercer, G. and Shakespeare, T. 2003. Exploring disability. Cambridge: Polity. British Pregnant Advisory Service. 2022. Termination of pregnancy for fetal anomaly [online] [Accessed on 6 April 2022] Available from: www.bpas.org/get-involved/campaigns/ briefings/fetal-anomaly/ Butchard, P. 2020. Principles of international law: A brief guide. Briefing Paper no. 9010. London: House of Commons Library. Convention on the Rights of Persons with Disabilities and Optional Protocol. 2006. [online] [Accessed on 13 February 2022] Available from: www.un.org/disabilities/documents/convention/convoptprot-e.pdf. Convention on the Rights of the Child. 1989. [online] [Accessed on 13 February 2022] Available from: www.ohchr.org/en/professionalinterest/pages/crc.aspx CRC Committee. 2006. General comment 9, the rights of children with disabilities. [online] [Accessed on 10 March 2022] Available from: https://digitallibrary.un.org/ record/593891?ln=en CRPD Committee. 2018. Comments on the draft general comment no36 of the HRC on article 6 of the international covenant on civil and political rights. [online] [Accessed on 8 May 2022] Available from: www.ohchr.org/Documents/HRBodies/CCPR/GCArticle6/CRPD.docx De Asís, R. 2016. La convención internacional de los derechos de las personas con discapacidad como marco de interpretación de los derechos eneralsive de la constitución enerals [The International CRPD as an interpretation framework on the fundamental rights at the Spanish Constitution] In CERMI (ed.), La Convención Internacional sobre los Derechos de las Personas con Discapacidad- 2016–2016: una década de vigencia [The International CRPD 2006–2016- a decade into force], Madrid: ed. Cinca, Colección Convención ONU 18, pp. 129–148. Dixon, D. P. 2008. Informed consent or institutionalized eugenics? How the medical profession encourages abortion of fetuses with Down syndrome. Issues in Law & Medicine 24(1), pp. 3–59.

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Begoña Rodríguez Díaz Flórez, J. 2017. Síndrome de down. Comunicar la noticia: el primer acto terapéutico. [Down syndrome. Sharing the news: the first therapeutic act]. Santander: Fundación Iberoamericana Down 21. Gardiner, R. K. 2008. Treaty interpretation, New York: Oxford University Press. Garne, E., Koshnood, B., Loane M., Boyd P., Dolk H. and EUROCAT Working Group. 2010. Termination of pregnancy for fetal anomaly after 23 weeks of gestation: A European register-based study. An International Journal of Obstetrics & Gynaecology 117(6), pp. 660–666. How, B., Smidt, A., Wilson N. J., Barton R. and Valentin C. 2019. We would have missed out so much had we terminated: What fathers of a child with down syndrome think about current non-invasive prenatal testing for Down syndrome. Journal of Intellectual Disabilities 23(3), pp. 290–309. Human Fertilisation and Embryology Act. 1990. [online] [Accessed on 2 November 2021] Available from: www.legislation.gov.uk/ukpga/1990/37/contents Human Rights Committee. 2018. General Comment 36 about art. 6 (right to life) ICCPR. [online] [Accessed on 8 May 2022] Available from: https://tbinternet.ohchr.org/Treaties/ CCPR/Shared%20Documents/1_Global/CCPR_C_GC_36_8785_E.pdf Jotkowitz, A. and Zivotofsky A. Z. 2010. The ethics of abortions for fetuses with congenital abnormalities. European Journal of Obstetrics & Gynecology and Reproductive Biology 152, pp. 148–151. Korenromp, M. J., Page-Christiaens G. C, van den Bout J, Mulder E. J and Visser G. H. 2007. Maternal decision to terminate pregnancy in case of Down syndrome. American Journal of Obstetrics & Gynecology 196(2), pp. 149.e1–149.e11. Lafarge, C., Mitchell, K., Breeze, A. C. G. and Fox, P. 2017. Pregnancy termination for fetal abnormality: Are health professionals’ perceptions of women’s coping congruent with women’s accounts? BMC Pregnancy Childbirth 17(1), pp.1–12. Lavelanet, A. F., Schlitt, S., Johnson, B. R and Ganatra, B. 2018. Global Abortion Policies Database: A descriptive analysis of the legal categories of lawful abortion. BMC International Health Human Rights 18, p. 44. Lawson, A. and Beckett A. E. 2021. The social and human rights models of disability: Towards a complementarity thesis. The International Journal of Human Rights 25(2), pp. 348–379. Lejeune, J. 1981. Testimony. Subcommittee on Separation of Powers, report to Senate Judiciary Committee S-158, 97th Congress, 1st session. [online] [Accessed on 16 October 2021] Available from: www.congress.gov/bill/97th-congress/senate-bill/158 Linderfalk, U. 2007. On the interpretation of treaties. The modern International Law as expressed in the 1969 Vienna Convention on the Law of Treaties, Law and Philosophy Library 83, Dordrecht: Springer. Martínez-Pujalte, A. L. 2016. Derechos en conflicto. Conflicto de derechos. Principales fricciones entre la Convención Internacional de los Derechos de las Personas con Discapacidad y la legislación enerals [Conflicting rights. Conflict of rights. Main frictions between the International CRPD and Spanish legislation]. In Pérez Bueno LC and De Lorenzo R (eds.), La Convención Internacional sobre los derechos de las personas con discapacidad 2006–2016. Una década de vigencia [The International CRPD 2006–2016- a decade into force]. Madrid: CERMI/Cinca: 149–186. Ministerio de Sanidad, Consumo y Bienestar Social. 2021. Distribución porcentual del número de abortos realizados según el enera de la interrupción. Total nacional. (Percentage distribution of the number of abortions performed by reason for termination. National total [online] [Accessed on 16 October 2021] Available from: www.sanidad.gob.es/profesionales/saludPublica/ prevPromocion/embarazo/tablas_figuras.htm#Tabla6 Morris, J. 1991. Pride against prejudice. Transforming attitudes to disability. London: The Women’s Press. Moyano Bonilla, C. 1985. La interpretación de los tratados internacionales según la convención de Viena de 1969 [The interpretation of International Treaties according to the 1969 Vienna Convention]. Integración Latinoamericana 10(106), pp. 32–49. NHS. Screening tests in pregnancy. [online] [Accessed on 30 January 2021] Available from: www.nhs.uk/pregnancy/your-pregnancy-care/screening-tests/

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Is Disability a Justification to undermine the Right to Life? Palacios, A. 2010. ¿Por qué el aborto eugenésico basado en discapacidad es contrario a la Convención Internacional de los Derechos de las Personas con Discapacidad? [Why is disability-based eugenic abortion contrary to the International CRPD?] Revista Síndrome de Down 27, pp. 50–58. Pauwelyn, J. and Elsig M. 2012. The politics of treaty interpretation. In J. Dunoff and M. Pollack (eds.), Interdisciplinary perspectives on international law and international relations: The state of the art. Cambridge: Cambridge University Press, pp. 445–474. Rodrigo, A. and Abegón, M. 2017. El concepto y efecto de los tratados internacionales de protección de los intereses enerals de la comunidad internacional [The concept and effect of international treaties for the protection of the general interests of the international community], Revista Española de Derecho Internacional 69(1), pp. 167–193. Rodríguez Díaz, B. 2019. Mission impossible? Preventing discrimination on grounds of disability of foetuses with Down syndrome in spain after the emergence of non-invasive prenatal testing. International Journal of Discrimination and the Law 19(3–4), pp. 178–199. Royal College of Obstetricians and Gynaecologists. 2010. Termination of Pregnancy for Fetal Abnormality in England, Scotland and Wales. London: Royal College of Obstetricians and Gynaecologists. Schulze, M. 2009 Understanding the UN convention on the rights of persons with disabilities. New York: Handicap International. Shakespeare, T. W. 1998. Choices and Rights: Eugenics, genetics and disability equality. Disability & Society 13(5), pp. 665–681. Shakespeare, T. W. and Watson N. 2001. The social model of disability: An outdated ideology. In S. N. Barnatt and B. M. Altman (ed.), Exploring theories and expanding methodologies: Where we are and where we need to go (Research in Social Science and Disability, Vol. 2), Bingley: Emerald Group Publishing Limited, pp. 9–28. Skotko, B. G., Levine S. P. and Goldstein R. 2011a. Self perceptions from people with Down syndrome. American Journal of Medical Genetics Part A 155, pp. 2360–2369. Skotko, B. G., Levine S. P. and Goldstein R. 2011b. Having a brother or sister with down syndrome: Perspectives from siblings. American Journal of Medical Genetics part A 155A(10), pp. 2348–2359. Skotko, B. G., Levine S. P. and Goldstein R. 2011c. Having a son or daughter with Down syndrome: Perspectives from mothers and fathers. American Journal of Medical Genetics Part A 155A(10), pp. 2335–2347. Vargas Aldecoa, T. 2016. Estudio de la comunicación del diagnóstico del Síndrome de Down de los profesionales sanitarios [A study on the communication of a Down Syndrome diagnosis from healthcare professionals] (PhD Thesis), Mancha, Universidad de Castilla la Mancha. Vienna Convention on the Law of Treaties. 1969. [online] [Accessed on 4 December 2021] Available from: https://legal.un.org/ilc/texts/instruments/english/conventions/1_1_1969.pdf Women Enabled International. 2020. Abortion and disability: Towards an intersectional human-rights-based approach. Washington: Women Enabled International. World Health Organisation. 2021. Global abortion policies database [online] [Accessed on 30 November 2021] Available from: https://abortion-policies.srhr.org/

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Vignette Five MEET ANE

Hello, everyone, my name is Ane. I am a 16-year-old freshman in senior high school, studying e-commerce. I really love the campus life at present, especially working in teams with my friends and classmates, which is an awesome experience! I spend most of the time learning in the regular class, except the physical education class, which was replaced with ‘learning strategy lesson’ and ‘motor function training’ in the resource classroom. I take the school bus to school; some classmates volunteer to carry my bag for me so that I can smoothly get to my classes with the walker. Since I have the privilege to take the elevators with a pass, they all feel lucky to be with me. In school, I use a four-wheeled walker for short-distance movement and drive an electric wheelchair between different buildings, such as going from general classroom to the computer classroom. I learn how to drive an electric wheelchair in the ‘motor function’ class, which also provides practice to move around in the community. I appreciate all kinds of assistance provided by the school authorities. The teacher from the resource class advocated for my needs in the class, encouraged me to ask for volunteers if required, and shared with all the students the knowledge regarding wheelchairs, which was extremely helpful. I like to be with my friends and sing online, together. Once we talked about going to a movie; all my friends were willing to arrange for that day in advance when I said, ‘Guys, you need to consider me’, hoping it can come true! I have been like this since I was born. At one point, I was really confused about why I was like this, but I soon felt better because it is unchangeable. Before I graduated from junior high school, because of my movement disability, my parents wanted to keep me in senior high school closer to home, to help me when needed. This was not my first choice. Despite being unhappy regarding this, I accepted their decision and chose the one I am in at present. Where I am now is wonderful. Though most of my life experiences have been great, there has also been a bad moment. Once, when I went to a movie with my friends, I noticed someone pointing DOI: 10.4324/9781003056737-26

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at me and murmuring. I felt extremely angry. I complained to my friends but soon felt fine. In my opinion, I must speak for myself if something unfair happens to me. Although it may be dangerous to argue with an opponent when alone, I have friends who can help me communicate in a feasible manner. Ane is 16 years old and lives in Taiwan. Co-authors: Meng-Hsuan Hsieh and Heng-hao Chang (National Taipei University).

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19 DOWN SYNDROME ABORTION BANS Law and Ethics Ryan H. Nelson and Jamie M. Crist Introduction Due to recent developments in foetal screening tests which make them cheaper and safer, some fear more women will discover earlier in their pregnancies that the foetus has a disability and wish to terminate their pregnancy, thus increasing rates of abortion. This fear is not misplaced; estimates indicate terminations are performed in over two-thirds of pregnancies involving a prenatal diagnosis of Down syndrome in the United States (de Graaf, Buckley and Skotko 2015; Natoli et al. 2012). This pales in comparison to countries where prenatal screening is universally available, such as Denmark and Iceland, where the number of children born with Down syndrome following prenatal diagnosis is approaching zero (Lou et al. 2018; Government of Iceland 2018). Such trends have led some to draw parallels between early 20th century eugenics and the termination of foetuses diagnosed with Down syndrome (Will 2018; Jerome Lejeune Foundation 2017; Forte 2018). By harkening back to this dark time in American history, some disability activists have partnered with anti-abortion lawmakers to pass ‘anti-discrimination’ abortion bans, which make it a crime for a medical provider to perform an abortion on a person when that medical provider knows the abortion is sought due to the potential disability of the foetus, most commonly Down syndrome. Anti-discrimination abortion bans are gaining momentum, in part due to the rightward shift of the ideological balance of the Supreme Court of the United States during the Trump administration, making anti-abortion activists hopeful the time is now ripe to revisit the permissibility of abortion in the United States (Eilperin and Scherer 2019). So far, most of these laws have been struck down by district courts and appellate judges on the grounds that they prohibit abortions prior to foetal viability; this violates the Supreme Court precedent set by Roe v. Wade, 410 US 113 (1973), and Planned Parenthood of Southeastern Pennsylvania v. Casey, 505 US 833, 879 (1992), that no law may ‘prohibit any woman from making the ultimate decision to terminate her pregnancy before viability.’ In Box v. Planned Parenthood of Indiana and DOI: 10.4324/9781003056737-27

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Kentucky, 587 US ____(2019), the Supreme Court denied certiorari (i.e. a request for a higher court to review the decision of a lower court) on a case regarding the constitutionality of reason-based bans because of its practice of waiting for more appellate court rulings. But as more lower courts weigh in, it is only a matter of time before the Supreme Court hears a case on the issue. Supporters of this type of legislation are hopeful that the stated goal of ‘preventing discrimination’, in combination with the new make-up of the Court, will mean changes regarding the legality of abortion in the United States. This raised an important and complex question: Do disabled children have a right to be born, in a way that genetically typical children do not? In this chapter, we explore the legal context of abortion legislation in the United States before moving into discussion of various ethical arguments regarding Down syndrome abortion bans.

Legal History of Abortion Access The right to abortion access in the United States had its start in a landmark Supreme Court case about contraceptives. In Griswold v. Connecticut, 381 US 479 (1965), the Supreme Court invalidated a law prohibiting the use of contraceptives by married couples, because it impermissibly infringed upon the privacy around the marital relationship. While the Constitution does not explicitly mention a right to privacy, the Court found the Bill of Rights implies this right to privacy from the rights it does expressly guarantee. In other words, the ‘spirit’ of the First Amendment (free speech, religion, press), Third Amendment (prohibition on the forced quartering of soldiers), Fourth Amendment (freedom from unreasonable searches and seizures), Fifth Amendment (freedom from self-incrimination), in combination with the Ninth Amendment—which does not limit fundamental rights to those specifically enumerated in the Constitution—creates a ‘zone of privacy’ around the marital relationship that cannot be infringed upon by the government without good reason. The Court subsequently used this right to privacy to invalidate laws preventing contraceptive access for unmarried persons in Eisenstadt v. Baird, 405 US 438, 453 (1972), with the Court writing: If the right to privacy means anything, it is the right of the individual . . . to be free from unwarranted governmental intrusion into matters so fundamentally affecting a person as the decision whether to bear or beget a child. Then, in its 1973 decision on Roe v. Wade, 410 US at 153, the Court found the right to privacy in the Fourteenth Amendment—which says that no state shall deprive a person of ‘liberty’ without due process of law—and determined this right to privacy ‘encompass[es] a woman’s decision whether or not to terminate her pregnancy’. However, this right to terminate a pregnancy is not unlimited. When rights are deemed ‘fundamental’ to personal liberty, as the Court determined the right to an abortion to be, any regulations or legislation limiting that right must be ‘narrowly tailored’ to further a ‘compelling’ state interest. This standard, called ‘strict scrutiny,’ 342

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is the ‘due process of law’ part of the Fourteenth Amendment. The Court in Roe recognised two state interests that, at some point during pregnancy, become compelling enough to justify infringing upon that right to personal privacy: preserving the health of the pregnant woman and protecting the potentiality of human life (Roe at 162). The Court set up a framework based on the trimesters of pregnancy that governs abortion regulation. As the pregnancy progresses, the state’s interests increase as the privacy right decreases. Before the end of the first trimester, the Court held, the abortion decision should be left to the pregnant person and her physician. In the second trimester, before the foetus is viable, the state may regulate the abortion procedure in ways ‘rationally related’ to maternal health. After viability, when the foetus has the ability to live outside the womb and the state’s interest in protecting foetal life is at its highest, the state may ‘go so far’ as to prohibit abortion, except when it is necessary to preserve the life or health of the mother (Roe at 163–4). This framework was utilised for 19 years. In the 1992 case Planned Parenthood v. Casey, 505 US at 879, the Court upheld the essential holding of Roe that ‘a State may not prohibit any woman from making the ultimate decision to terminate her pregnancy before viability.’ It jettisoned the trimester framework and strict scrutiny, however, asserting that these aspects of Roe undervalued the state’s interest in potential life (Casey at 873). Instead, the Court developed an ‘undue burden’ standard to evaluate the permissibility of abortion legislation. This test analyses whether a state’s regulation has the purpose or effect of placing a substantial obstacle in the path of a woman seeking an abortion of a non-viable foetus. If it prevents the abortion for a ‘large fraction’ of women, it is an undue burden and is therefore invalid (Casey at 895). This standard, however, permits the state to pass laws that ‘do no more than create a structural mechanism by which the State . . . may express profound respect for the life of the unborn’, so long as they are not undue burdens on the right to choose (Casey at 878). Using this standard, Casey upheld laws requiring a mandated waiting period of 24 hours after the informed consent has been obtained, parental notice for minors seeking abortions, and reporting and record-keeping requirements but struck down a law mandating spousal notice. This balancing of benefits and burdens has been the guiding principle for abortion legislation since then. The Court eventually recognised a third interest compelling enough to justify infringement upon the right to abortion: respect for the medical profession. In Gonzales v. Carhart, 550 US 124 (2007), the Court upheld the Partial-Birth Abortion Act passed by Congress that banned the method of abortion called an intact dilation and extraction. Congress felt, and the Court agreed, that the realities of this procedure— during which the foetus is partially delivered before it is killed—had the potential to erode the public’s opinion of the medical community. This is similar to the Supreme Court case Washington v. Glucksberg, 521 US 702, 731 (1997), where the Court upheld legislation banning physician-assisted suicide because it could ‘undermine the trust that is essential to the doctor-patient relationship by blurring the time-honored line between healing and harming’. The Court in Gonzales at 158 held that ‘the State may use its regulatory power to bar certain procedures and substitute others, all in 343

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furtherance of its legitimate interests in regulating the medical profession in order to promote respect for life, including life of the unborn’. It is this interest that proponents of anti-discrimination bans are hoping to build upon in order to achieve their aims of reducing abortions of foetuses with Down syndrome.

Legal Arguments Supporting Bans Opponents of selective abortion bans mostly centre their legal arguments on the essential holdings of Roe and Casey that any law prohibiting abortion pre-viability is per se unconstitutional. Even if the Court decided to apply the undue burden standard instead of categorically invalidating the statute for prohibiting abortion pre-viability, laws of this type do place a substantial obstacle (no abortion) in the path of a ‘large fraction’ of (all) women seeking an abortion because of foetal Down syndrome. Proponents of selective abortion bans, then, must hope that the Court will recognise preventing discrimination as a compelling-enough interest to justify infringing upon the right to privacy even before the foetus is viable. With the change in the ideological balance of the Court, it may be the moment they have been waiting for since 1973. The discrimination prevented, proponents argue, is two-fold. First, it prevents a woman from ‘discriminating against’ her pregnancies by terminating a pregnancy when foetal Down syndrome is suspected that she would not terminate if the foetus were developmentally typical. Second, it prevents discrimination against adults and children living with Down syndrome by sending a message that all lives are equally valuable (see the expressivist argument in the following section). While these arguments typically ignore that foetuses have not been considered ‘persons’ within the meaning of anti-discrimination laws, these arguments have had some uptake. Justice Clarence Thomas of the Supreme Court indicated support for this position in an opinion objecting to the Court’s decision to deny certiorari on a case regarding selective bans, writing, ‘[Anti-discrimination bans] promote a State’s compelling interest in preventing abortion from becoming a tool of modern-day eugenics’ (Box, 587 US ____, 2019). Appellate judges have indicated support as well, with one judge writing, ‘The right identified in Roe and Casey is only the right to decide whether to have a child, not the right to decide which child to have’ (Planned Parenthood v. Indiana, 888 F. 3d 300, 311, 2018). Proponents argue that women do not have the right to abort an otherwise-wanted child on a ‘discriminatory’ basis. If the ‘preventing discrimination’ interest is not compelling enough on its own, proponents argue alternatively that preventing discrimination should be considered an offshoot of the respect for medical profession interest previously legitimised in Gonzales. Proponents argue that doctors should not be participants in the process of terminating foetuses diagnosed with Down syndrome, arguing that doing so amounts to participation in eugenics. Opponents of these bans argue that laws of this type send the message that foetuses with Down syndrome are entitled to more protection and are inherently more valuable than a developmentally typical foetus. Some have seen proposed Down syndrome 344

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abortion bans as thinly veiled attempts by anti-abortion politicians to further their ideological aims by stirring up fervour in the disability community. Using disablism to sneak past an abortion ban or put abortion advocates in an uncomfortable position is a brilliant tactic, and one advocates must not fall for. . . . These bills are also cynically drawing directly on real concerns from the disability community. (Smith 2019) Others have noted inconsistency in those who extol the value of the lives of disabled people without accompanying efforts to promote social support and legal protection for existing people with disabilities (Mizner and Molinas 2019). It is likely that, if the Supreme Court upholds Down syndrome abortion bans, soon after, there will be legislation seeking to make all foetuses equal under the law, utilizing the Equal Protection Clause of the Fourteenth Amendment and thus beginning the process of eroding the right to privacy established by Roe v. Wade.

The Ethics of Down Syndrome Abortion Bans Despite legitimate worries about the motivations behind proposed legislation, we will assume that the arguments are being made in good faith so that we may consider some of the ethical considerations underlying efforts to ban abortion on the sole basis of a Down syndrome diagnosis. Recent public engagement on the issue follows a rich debate in the academic literature on the practice of ‘selecting against’ disability. Importantly, this debate goes beyond entrenched disagreements about the moral status of abortion, which often turn on conflicts between the rights of pregnant person and foetus. It would be trivial to discuss the ethics of Down syndrome abortion bans if the matter could be settled simply by appeal to the ethics of abortion more generally: if a foetus’s right to (say) life trumps a mother’s right to (say) bodily autonomy, or vice versa, then the question about the morality of abortion in cases of Down syndrome would be settled incidentally. A more substantive question is whether abortion for the purpose of preventing Down syndrome is somehow uniquely problematic or involves any distinct rights claims. Perhaps such abortions are objectionable, despite there being nothing wrong with abortion per se, or perhaps abortion is generally objectionable, while abortion for the purpose of preventing Down syndrome is particularly objectionable. For present purposes, then, we put aside familiar arguments that bear on the ethics of abortion so that we may focus on the ethically salient issues related to Down syndrome abortion bans. Although this chapter focuses on the practice of selective abortion, it should be noted that many of the ethical arguments considered in what follows may apply to the range of approaches used to prevent Down syndrome—such as pre-implantation genetic testing and selective implantation following IVF. Moreover, many of these arguments will apply beyond the scope of Down syndrome to include a range 345

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of disorders, disabilities, and differences. This being so, our discussion will move between disability generally and Down syndrome in particular.

The Disability Critique and Expressivist Objection What has come to be known as the disability critique of prevention efforts draws on the social model of disability. Generally speaking, the social model understands disability to arise from a poor fit between individuals and social structures or between atypical bodies and the world as we have chosen to construct it. As such, any harm or disadvantage associated with disability is, in some important sense, social in nature. The social model can be contrasted with the individual, or what is often termed the medical model, which takes disability to be a result of impairment or dysfunction within individual bodies whose associated harm/disadvantage are primarily biological. This conceptual distinction gives rise to an ethical one: while the social model favours responses to disability that alter the world people with disabilities occupy, the medical model favours interventions that alter people to fit better within the existing world. Building upon the foundation of the social model, the disability critique holds that: If people with disabilities were fully integrated into society, then there would be no need for the testing. In the world they seek to create, if a given health status turned out to be a handicap, that would be because of societal, not personal, deficits; the appropriate response would be to change society so that the person could live a full life with a range of talents, capacities, and difficulties that exist for everyone. In a society that welcomed the disabled as well as the non-disabled, there would be no reason to prevent the births of people with traits now called disabling. (Parens and Asch 2000, 23) This view may be used to motivate the idea that at least some of the features of Down syndrome that render it something to be prevented are best addressed by means of social reform rather than eradication efforts. In other words, if we made the world more hospitable to people with Down syndrome, perhaps we would not be so eager to select against it. Barnes (2009, pp. 350–351) notes that the practice of selecting against disability can be criticised on both ethical and epistemic grounds: The only motivation for negative selection seems to be bound up in false views about disability—particularly, in the construal of disability as a negative difference-maker rather than just a difference-maker. The choice for negative selection relies on the notion that disability is somehow sub-optimal, making an able-bodied child preferable to a child with a disability. But this view of disability is . . . a profound misunderstanding. Here we see two layers of the problem as set forth in the disability critique: A medical approach to disability fails to address (what disability advocates see as) unjustly ableist 346

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social arrangements while, at the same time, operating under mistaken assumptions about the nature of disability. This latter epistemic hazard may be compounded in the case of prenatal screening for Down syndrome, given the difficulty clinicians face when attempting to convey ‘balanced’ information about Down syndrome to prospective parents (Hippman, Inglis and Austin 2012). Even more troubling is the fact that prospective parents commonly report feeling pressured to pursue termination following a prenatal diagnosis of Down syndrome while receiving ‘inadequate information and little compassion’ (Nelson et al. 2013). Bridle (2011) reports the experience of one prospective parent: They were ready to take us up there straight away and do it. There was no, oh here’s the number for the Down syndrome association or anything, give them a call. . . . [T]here was no, no information. They were just thinking, Down syndrome get rid of it. These experiences and related concerns about coercion have the potential to undermine the reproductive freedom argument so often given in support of the practice of prenatal screening and selective abortion. Of course, whether Down syndrome is best characterised by the social or medical model—and thus subject to the core of the disability critique—is an open question. While it is increasingly common to hear conditions like autism and dyslexia referred to as forms of ‘neurodiversity’ rather than disorders, the somatic complications so often associated with Down syndrome make it arguably a less natural fit within a ‘human variation’ paradigm. The burdens of congenital heart defects, gastrointestinal abnormalities, susceptibility to leukaemia and dementia, and other possible health effects of Down syndrome would be difficult (or impossible) to eliminate through social means alone. Even so, it is undeniable that social change, beginning with the deinstitutionalisation movement of the 1960s, has made life with Down syndrome easier and better for many. This suggests at least some degree of mutability in the trajectory of the lives of people with Down syndrome, which may influence decisions to pursue prevention efforts. Often accompanying the disability critique is the expressivist objection which holds that selecting against disability traits ‘expresses discriminative attitudes [which] send a hurtful message to people who live with those same traits’ (Parens and Asch 2000) and in turn ‘reinforce the belief that disability is inimical to a worthwhile life’ (Asch and Barlevy 2012). A number of disabled writers have echoed the expressivist objection to heart-rending effect. Rebecca Cokley (2017), who has achondroplasia, writes that widespread use of prenatal screening and selective abortion communicates thus to people with disabilities: ‘We don’t want you here. We’re actively working to make sure that people like you don’t exist because we think we know what’s best for you.’ Activist Frank Stephens (2017) conveyed a similar message in his testimony to Congress: ‘I am a man with Down syndrome, and my life is worth living. . . . I completely understand that the people pushing this particular “final solution” are saying that people like me should not exist.’ 347

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Importantly, the concern here is not merely with rhetoric or hurt feelings; rather, it is with the fortification of attitudes underlying practices and institutions that literally (according to the social model) disable people. Note that the expressivist objection opposes prevention efforts not because they cause direct harm to foetuses or embryos but because they cause indirect harm to existing people by expressing demeaning attitudes about them, which risks reinforcing exclusionary and discriminatory social practices. An additional concern is that increased use of prenatal screening and selective abortion means fewer people born with Down syndrome, which means less visibility and fewer advocates, which can translate into reduced social support and political leverage. These modes of argument allow disability advocates to sidestep disagreements about the moral status and rights of foetuses and embryos by focusing on existing persons whose moral status is beyond question.

The Social Value and Genocide Objections A distinct criticism of the practice of selecting against disability appeals to what would be lost in a world without certain disability groups. Members of these groups, the argument goes, contribute valuable diversity, unique perspectives, and distinct strengths to the population. Eradicating them would therefore leave us worse off collectively, rendering the social world impoverished in some significant way. Rosemary GarlandThomson (2015, p. 13), a prominent defender of ‘disability conservation’, argues: To conserve is to ameliorate more than eradicate, to sustain more than transform, to accommodate more than eliminate. Conserving disability in this way affirms human embodied variation and distinctiveness, not because it is the given, but because it is the good. Disability conservation, then, promotes and protects human biodiversity. One can affirm the ethical importance of such diversity in several ways, from the straightforward consequentialist claim that diversity promotes aggregate welfare to claims about the aesthetic and epistemic value of diversity (Garland-Thomson 2012). There are two potential concerns with this line of argument. One holds that appealing to the social value of diversity instrumentalises people with disabilities by attempting to justify their continued existence in terms of what they can offer ‘the rest of us’. We might think that a claim on existence ought not be made contingent on its contribution to welfare, beauty, or ways of knowing. A related, but less disability-positive, concern is that this kind of argument justifies imposing burdens on individuals for the sake of social good. Sparrow (2015) notes that: [W]e may be reluctant to act so as to secure such diversity at the cost of some individuals having lower expected welfare than others at birth and having lower expected welfare than other individuals that might have been born in their place. (p. 6) 348

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If one thinks that having Down syndrome makes one worse of (on average, all things considered), then we might think that we ought to prevent future cases even if doing so would deprive others of the social benefits associated with the continued existence of the contingency of people with Down syndrome. Related to the objection that Down syndrome prevention deprives the world of valuable diversity is the objection that it amounts to ‘a deliberate systematic attempt to erase a category of people’ (Will 2018). Forte (2018) makes the point in no uncertain terms: ‘Hitler wanted Europe to be judenrein, scrubbed clean of Jews. It seems that today Europe aspires to be DownSyndromerein.’ By definition, it is true that efforts to prevent Down syndrome amount to an effort to reduce the numbers of people born with Down syndrome and, if widespread enough, would result in this group being eliminated altogether. Notice, however, that this definitional fact does not settle the ethical question or establish the practice as an instance of ‘genocide’ in the relevant sense. Prenatal screening for Tay-Sachs is likewise ‘a deliberate systematic attempt to erase a category of people’— namely, the category of people who would be born with Tay-Sachs. But we tend to think that this is one of the success stories in prenatal screening. What, then, distinguishes ‘individuals with Down syndrome’ qua social group from ‘individuals with Tay-Sachs’ qua social group? Those who see the eradication of Down syndrome as tantamount to genocide would seem to establish two criteria: First, it should be the case that people with Down syndrome constitute a ‘socially salient’ group. One can construct countless social groups on the basis of some shared characteristic—people with freckles on their left ring fingers, cilantro dislikers, plumbers with perfect pitch, and so on. But the mere fact that there is some feature, property, or descriptor that unifies a number of people into a group does not mean that the group warrants the same moral consideration of, say, racial/ethnic minority groups or religious communities. The question, then, is whether the future contingency of people with Down syndrome is best characterised as socially salient in the relevant sense. Second, it should be the case that elimination of the group would be a bad thing, in some significant sense or another. Yes, there has been a concerted effort to eliminate the Tay-Sachs group, but most people take this to be a positive endeavour, given the burdens associated with the disease. Opponents of selecting against Down syndrome are certain to reject the suggestion that Down syndrome is intolerably burdensome, of course. But this is, in part, where the disagreement lies. So in order for the genocide objection to be successful, it must be the case that (i) people with Down syndrome constitute a socially salient group, and (ii) eliminating that group would be a bad thing.

The Parent–Child Relationship and Parental Duties Objections While the arguments considered earlier typically target healthcare workers and health policymakers, some objections to selecting against disability are addressed towards prospective parents themselves. One concerns the nature of the parent–child relationship. As mentioned in the discussion of the ‘disability critique,’ disability advocates 349

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have argued that medicalising disability both overstates the magnitude of harm or disadvantage associated with disability and misidentifies its source as being rooted in biology rather than social structures and the built world. Similarly, there is a concern that prospective parents (and the healthcare professionals advising them) may have misguided views about the effects having a child with a disability will have on their experience as parents. Asch and Barlevy (2012) note the importance of such views in the decision-making process: If professionals and parents believed that raising children with disabilities could provide their parents with much the same stimulation, love, companionship, pride, and pleasure in influencing the growth and development of another, they might re-examine their belief that the ‘burdens’ . . . of raising disabled children outweigh the benefits. When it comes to Down syndrome, Skotko, Levine, and Goldstein (2011) report that ‘the overwhelming majority of parents surveyed report that they are happy with their decision to have their child with Down syndrome and indicate that their sons and daughters are great sources of love and pride,’ concluding that ‘the experience of Down syndrome is a positive one for most parents, siblings and people with Down syndrome themselves.’ Asch and colleagues assert that one of the sources of misguided assumptions about a Down syndrome diagnosis and quality of the parent–child relationship is the tendency to assume ‘that this one piece of information suffices to predict whether the experience of raising that child will meet parental expectations’ (Asch 2000, p. 236). Asch and Wasserman (2005, p. 203) refer to this tendency as a kind of ‘synecdoche,’ in which a stigmatised trait effaces the person as a whole, as is common in disability, despite the fact that disability ‘will rarely defeat reasonable hopes and dreams for rearing a child or preclude rewarding relationships with the child’. If the first argument is primarily descriptive—appealing to the actual effects that having a child with disability like Down syndrome has on the parent–child relationship—the next is more normative—appealing to obligations one takes on by stepping into the role of ‘parent’. Asch and Wasserman (2005, pp. 203–204) argue that the norms of good parenting include a norm of ‘unconditional welcome’: Abandoning a parental project in the face of [disability] is inconsistent with the commitment to welcome and nurture any child the parents have, a commitment we regard as the moral foundation of the family. . . . If prospective parents refuse to have a child because of a characteristic that threatens disappointment or frustration, why should they commit themselves to appreciating, enjoying, and valuing children who will inevitably manifest other departures from their expectations and dreams? This kind of normative argument is stronger and more stable than descriptive arguments about the effects of disability on a family in that it holds that the ethical requirements generated within the parent–child relationship are not contingent on 350

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empirical findings about the effects of disability. That is, even if we suppose that Down syndrome does have some detrimental effect on the parent–child relationship, it is plausible to think that parents have obligations to the child qua parents.

In Favour of Prevention The preceding discussion sought to highlight some of the ethical considerations related to the practice of preventing Down syndrome by means of prenatal screening and selective abortion. As stated at the outset, the focus was on considerations independent of the ethics of abortion per se. However, it is challenging to keep the issues completely separate. One method of gauging the extent to which our judgements about Down syndrome are influenced by intuitions about the various means of prevention is to consider how the arguments translate to cases where alternatives to selective abortion are employed. Consider two such cases: Water Supply: After recording a precipitous spike in the number of cases of Down syndrome in a small town, researchers discover that the town’s water supply contains an uncommon mineral composition recently determined to increase the probability of nondisjunction resulting in trisomy 21. As it turns out, there is an effective and inexpensive method of modifying the mineral composition in the water supply. Officials institute the method at the municipal water treatment plant, and over time, the rate of new cases of Down syndrome in the town returns to the national average. In this case, we see an example of what could be described either as a successful government science and public health campaign or a systematic attempt on behalf of the state to eliminate a group of people. The question is whether we are less likely to consider it the latter, given that the method of prevention is water treatment rather than selective abortion. If so, then there is reason to believe that intuitions about abortion are influencing intuitions about Down syndrome prevention. This is not to say that the ethics of abortion is irrelevant, of course. Rather, it highlights one of the difficulties of identifying what is objectionable about selective abortion for cases of Down syndrome in particular. Consider another case: Vitamin G: Researchers discover that insufficient prenatal levels of vitamin G dramatically increase the likelihood that a child will be born with Down syndrome. In response, the National Health Administration launches a public awareness campaign urging pregnant women to take vitamin G supplements. The campaign achieves its aims, and the rate of new cases of Down syndrome drops to historic lows. Parens and Asch (2000) consider the closely related examples of taking folic acid to reduce the likelihood of spina bifida and avoiding medications that are known to interfere with foetal development. While these modes of prevention are generally 351

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seen as protecting the health of a developing foetus, they note, disability advocates tend to see selective abortion differently: ‘Abortion does not protect the developing foetus from anything. It prevents disability by simply killing the foetus’ (Parens and Asch 2000). Similar sentiments are expressed about embryo selection on the basis of PGD. It is difficult to see how one can make this distinction, however, without smuggling in an assumption about the objectionability of abortion. Another challenge comes from Sparrow (2015), who employs the ‘reversal test’ (Bostrom and Ord 2006) to argue that proponents of disability ‘conservation’ fall prey to status quo bias. The reversal test asks us to compare our intuitions about moving from our current circumstances to some future possible state of affairs with what we would find it plausible to say about a case wherein we were contemplating a move from the possible future state of affairs to our current circumstances. For example, in a world that has never known Down syndrome, would we consider it to be a positive development if some babies began being born with three 21st chromosomes? If not, the argument goes, then there is reason to believe that intuitions in favour of conserving Down syndrome are rooted in status quo bias. Others have argued for the existence of a generalised obligation of ‘procreative beneficence’ (Savulescu 2001; Savulescu and Kahane 2009). The principle of procreative beneficence requires prospective parents to ‘select the child, of the possible children they could have, who is expected to have the best life, or at least as good a life as the others, based on the relevant, available information’ (Savulescu 2001, 415). According to Savulescu, not only are intending parents morally obligated to make use of preimplantation genetic diagnosis in order to prevent the birth of children with disabilities, but they also have an obligation to use technologies of genetic selection to have the ‘best child possible’. Malek and Daar (2012) strike a more moderate tone, arguing that parents have an obligation to prevent a ‘lethal or serious genetic anomaly’, which may or may not encompass Down syndrome. Such views suggest that if Down syndrome can be said to have a detrimental impact on well-being, self-determination, or opportunity, then parents have (at least a) pro tanto obligation to prevent Down syndrome.

Legal Rights, Moral Rights The previous discussion illustrates the range of legal and ethical arguments brought to bear on debates about Down syndrome abortion bans. While disability advocates present a compelling case against the practice of selective abortion, we have suggested that it can be difficult to evaluate the merits of their arguments without incorporating attitudes about abortion more generally. We will conclude by highlighting several of the rights claims at play in the debate, emphasising that Down syndrome abortion bans risk undermining right to information one needs to make autonomous choices, as well as the right to privacy. Although many anticipate change, current law holds that foetuses, with or without disabilities, do not have a right to exist until they are viable outside 352

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the womb. Morally speaking, the abortion debate is often couched in terms of a conflict between a foetus’s right to life and a pregnant person’s right to bodily autonomy. There is, of course, an extensive literature addressing the ethical foundations of these rights and their apparent conflict. While rights to life and bodily autonomy remain relevant to an ethical analysis of Down syndrome abortion bans, the more interesting question is whether there are any additional rights in play and whether these rights should receive different weights in this context. The first question concerns access to prenatal testing, which we might think rests upon something like a right to bodily autonomy. Although the right to autonomy is typically understood as a negative right—that is, a right that demands freedom from interference—it plausibly includes a positive right to certain information about one’s body and foetus. This mirrors the way in which the negative right to autonomy elsewhere in healthcare entails a right to the information required to participate in the informed consent process. If there is such a right to information about one’s body, then, in cases where information can be provided without undue burden on others, prenatal testing should be provided. Down syndrome abortion bans will run afoul of this right insofar as they discourage seeking such testing if abortion may be desired by the pregnant person. Second, the right to privacy remains relevant. Supposing again that abortion is generally permissible, the claim that abortion for the purposes of preventing the birth of a child with Down syndrome would require access to information about why the prospective parents chose to pursue abortion. This information is, or should be, protected by a right to privacy. Furthermore, we might think, if someone seeks to perform a generally permissible action on the basis of information over which she has a privacy claim, then she should be permitted to perform the action irrespective of the content of the protected information.

The issue of Down syndrome abortion bans continues to pose a challenge for disability advocates who are also committed to reproductive freedom. While this chapter does not purport to resolve the tension, we hope that it serves to shed light on the legal and ethical landscape so that we may navigate it with surer footing. Down syndrome is a genetic condition caused by extra genetic material on the 21st chromosome. While each individual with Down syndrome is unique, common characteristics include developmental delays, intellectual disability, congenital heart defects, low muscle tone, and distinctive facial features (CDC 2021). •

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In countries where prenatal screening is universally available, such as Iceland and Denmark, the number of children born with Down syndrome following prenatal diagnosis is approaching zero (Government of Iceland 2018). In the US, it is estimated that nearly 70% of pregnancies with a prenatal diagnosis of Down syndrome result in termination (Zhang 2020).

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The practice of selective abortion for cases of Down syndrome is described by some as ‘eugenics’ or ‘genocide,’ and by others as a public health triumph. (Forte 2018) A number of states in the US have taken legislative steps to ban abortion on the basis of a prenatal Down syndrome diagnosis alone. For up-to-date information regarding the legal status of abortion in the United States and state legislation surrounding selective abortions, please visit the Guttmacher Institute website at: https://www.guttmacher.org/state-policy/explore/ abortion-bans-cases-sex-or-race-selection-or-genetic-anomaly.

References Centers for Disease Control (CDC). 2021. Facts about down syndrome. [online] [Accessed on April 26, 2022] Available from: https://www.cdc.gov/ncbddd/birthdefects/downsyndrome.html Forte, D. F. 2018. From termination to extermination: The international down syndrome genocide. Public Discourse. July 23. [online] [Accessed on April 26, 2022]] Available from: https://www.thepublicdiscourse.com/2018/07/21996/ Government of Iceland. 2018. Facts about down’s syndrome and pre-natal screening in Iceland. [online] [Accessed on April 26, 2022] Available from https:// www.gover nment.is/diplomatic-missions/embassy-article/2018/03/26/ Facts-about-Downs-syndrome-and-pre-natal-screening-in-Iceland/. Zhang, S. 2020. The last children of Down syndrome. [online][Accessed on April 26, 2022] Available from: https://www.theatlantic.com/magazine/archive/2020/12/ the-last-children-of-down-syndrome/616928/

References Asch, A. 2000. Why I haven’t changed my mind about prenatal diagnosis: Reflections and refinements. In E. Parens and A. Asch (eds.), Prenatal testing and disability rights. Georgetown University Press, pp. 234–261. Asch, A. and Barlevy, D. 2012. Disability and genetics: A disability critique of pre-natal testing and pre-implantation genetic diagnosis (PGD). In: eLS. Chichester: John Wiley & Sons, Ltd. Asch, A. and Wasserman, D. 2005. Where is the sin in synecdoche? In D. Wasserman, J. Bickenbach and R. Wachbroit (eds.), Quality of life and human difference: Genetic testing, health care, and disability. Cambridge University Press: Cambridge. Barnes, E. 2009. Disability, minority, and difference. Journal of Applied Philosophy 26(4), pp. 337–355. Bostrom, N. and Ord, T. 2006. The reversal test: Eliminating status quo bias in applied ethics. Ethics 116(4), pp. 656–679. Bridle, L. 2011. Confronting the distortions: Mothers of children with down syndrome and prenatal testing. [online] [Accessed on April 26 2022] Available from: www.intellectualdisability.info/diagnosis/articles/confronting-the-distortions-mothers-of-children-withdown-syndrome-and-prenatal-testing. Cokley, R. 2017. Please don’t edit me out. Washington Post. August 10. [online] [Accessed on April 26 2022] Available from: www.washingtonpost.com/opinions/if-we-start-edit-

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Down Syndrome Abortion Bans ing-genes-people-like-me-might-not-exist/2017/08/10/e9adf206–7d27–11e7-a669b400c5c7e1cc_story.html. De Graaf, G., Buckley, F. and Skotko, B. G. 2015. Estimates of the live births, natural losses, and elective terminations with down syndrome in the United States. American Journal of Medical Genetics Part A 167(4), pp. 756–767. Eilperin, J. and Scherer, M. 2019. Amid a shifting legal landscape on abortion, both parties seek political advantage. Washington Post. 11 February. [Accessed on 13 February 2021] Available from: www.washingtonpost.com/politics/ Forte, D. F. 2018. From termination to extermination: The international down syndrome genocide. Public Discourse. July 23. [online] [Accessed on 26 April 2022] Available from: www.thepublicdiscourse.com/2018/07/21996/ Garland-Thomson, R. 2012. The case for conserving disability. Journal of Bioethical Inquiry 9(3), pp. 339–355. Garland-Thomson, R. 2015. Human biodiversity conservation: A consensual ethical principle. The American Journal of Bioethics 15(6), pp. 13–15. Government of Iceland. 2018. Facts about Down’s syndrome and pre-natal screening in Iceland. [online] [Accessed on 26 April 2022] Available from: www.government.is/ diplomatic-missions/embassy-article/2018/03/26/Facts-about-Downs-syndromeand-pre-natal-screening-in-Iceland/. Hippman, C., Inglis, A. and Austin, J. 2012. What is a ‘balanced’ description? Insight from parents of individuals with down syndrome. Journal of Genetic Counseling 21(1), pp. 35–44. Jerome Lejeune Foundation. 2017. Patricia heaton: Iceland is not eliminating down syndrome, but killing those with it. [online] [Accessed on 12 October 2021] Available from: https:// lejeunefoundation.org/patricia-heaton-iceland-eliminating-down- syndrome/. Lou, S., Carstensen, K., Petersen, O. B., Nielsen, C. P., Hvidman, L., Lanther, M. R. and Vogel, I. 2018. Termination of pregnancy following a prenatal diagnosis of Down syndrome: A qualitative study of the decision-making process of pregnant couples. Acta bstetrician et gynecologica Scandinavica 97(10), pp. 1228–1236. Malek, J. and Daar, J. 2012. The case for a parental duty to use preimplantation genetic diagnosis for medical benefit. The American Journal of Bioethics 12(4), pp. 3–11. Mizner, S. and Molinas, A. K. 2019. Offensive hypocrisy of banning abortion for a Down syndrome diagnosis. The Hill. 24 December. [online] [Accessed on 15 February 2021] Available from: https://thehill.com/opinion/healthcare/ Natoli, J. L., Ackerman, D. L., McDermott, S. and Edwards J. G. 2012. Prenatal diagnosis of Down syndrome: A systematic review of termination rates. Prenatal Diagnosis 32(2), pp. 142–53. Nelson Goff, B. S., Springer, N., Foote, L. C., Frantz, C., Peak, M., Tracy, C., Veh, T., Bentley, G. E. and Cross, K. A. 2013. Receiving the initial Down syndrome diagnosis: A comparison of prenatal and postnatal parent group experiences. Mental Retardation 51(6), pp. 446–457. Parens, E. and Asch, A. eds. 2000. Prenatal testing and disability rights. Whashington DC: Georgetown University Press. Savulescu, J. 2001. Procreative beneficence: Why we should select the best children. Bioethics 15(5–6), pp. 413–426. Savulescu, J. and Kahane, G. 2009. The moral obligation to create children with the best chance of the best life. Bioethics 23(5), pp. 274–290. Skotko, B. G., Levine, S. P. and Goldstein, R. 2011. Having a son or daughter with Down syndrome: Perspectives from mothers and fathers. American Journal of Medical Genetics Part A 155(10), pp. 2335–2347. Smith, S. E. 2019. Disabled people are tired of being a talking point in the abortion debate. Vox, 29 May. [online] [Accessed on 15 February 2021] Available from: www.vox.com/ first-person/2019/5/29/18644320/abortion-ban-2019-selective-abortion-ban-disability. Sparrow, R. 2015. Imposing genetic diversity. The American Journal of Bioethics 15(6), pp. 2–10.

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Ryan H. Nelson and Jamie M. Crist Stephens, F. 2017. Opening statement on down syndrome. C-Span. October 25. [online] [Accessed on 26 April 2022] Available from: www.c-span.org/video/?c4687834/ frank-stephens-opening-statement-syndrome. Will, G. F. 2018. The real down syndrome problem: Accepting genocide. Washington Post. March 14. [Accessed on 20 December 2022]. Available from: https://www.washingtonpost.com/ opinions/whats-the-real-down-syndrome-problem-the-genocide/2018/03/14/3c4f8ab826ee-11e8-b79d-f3d931db7f68_story.html

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20 CLASH OF COMPETING RIGHTS IN SURROGACY Embryos, Foetuses, and Children with a Disability JosAnn Cutajar What Is Surrogacy? The focus of this chapter is surrogacy, since this practice raises a number of bioethical and political questions (O’Reilly 2016), some of which are explored here. Through surrogacy, commissioning parents are in a position to buy the ‘best’ genetic material needed to create the perfect child. They have the legal right to choose the gametes, to choose which embryos to implant, and to decide which lives are worth living (Hubbard 2006). Embryos or foetuses with a disability are not seen as having the moral and legal rights to be born, since the ultimate goal is not to have any child but a ‘perfect’ one. These moral and legal dilemmas are highlighted in some of the surrogacy cases where the ‘damaged’ foetuses were saved by unlikely allies—the surrogate mothers who are paid to gestate these foetuses. These cases often end up in court and attract media attention, which like the courts adjudicate whether what is happening is morally and legally right, whether these foetuses had the right to be born. This is the focus of this chapter. Surrogacy is a method of assisted reproduction where the surrogate’s egg, the intended mother’s egg, or a donor’s egg is fertilised by the intended father’s or a donor’s sperm. Surrogacy is resorted to by individuals, or intended parents, who want to have children but are unable to conceive themselves (van Wichelen 2016): It is now possible for a woman to become pregnant as a result of nine different combinations of possible use of eggs and sperm: (a) the egg and sperm of a commissioning heterosexual couple; (b) the egg of a commissioning woman and donor sperm; (c) the egg of a donor and the sperm of a commissioning male (be he part of a couple or a single person); (d) both donor egg and sperm (unrelated to the commissioning person(s)); which the egg of a donor and sperm from the surrogate’s partner; (f) her own egg and DOI: 10.4324/9781003056737-28

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the sperm of a commissioning male; (g) her own egg and the sperm of a donor; or (h) her own egg and the sperm of her partner. (which(e) entail some form of ‘gestational’ surrogacy, in which the woman is not genetically related to the child; (f)—(h) entail what is often referred to as ‘traditional’ surrogacy, as the woman is genetically related to the child. (Allan 2015, endnote 21, p. 13) This chapter analyses cases where the intending parents’ wish for ‘perfect babies’ was thwarted. The primary objective of surrogacy is to provide intending parents with a ‘healthy’ child, which has led to the biotechnologisation and globalisation of family (van Wichelen 2016). Prenatal legal cases on foetus selection and choice are rare, but more common where surrogacy is concerned. The focus of this chapter is about ‘the dialectic between the absolute value of life and relative worthiness of life’ (Fassin 2009, p. 44). The issue that is explored here is what happens when commissioning parents realise that the child or children will have a disability or chronic illness. It also investigates who gets to make the decisions when this happens and puts into question the meaning of ‘parent’.

Types of Surrogacy In this section, two types of surrogacy arrangements are discussed. In gestational surrogacy, the surrogate is not genetically related to the child she gears. Intending parents can buy egg/sperm and, via pre-genetic screening, ensure that only embryos without impairment or congenital diseases are used. In traditional surrogacy, a surrogate becomes pregnant using her own egg and the sperm of one of the intending parents or a donor. In this case, the surrogate is the genetic mother. Gestational surrogacy is the more popular route. In commercial gestational surrogacy, the surrogate receives payment for services rendered (Cummings 2018). In this type of surrogacy, the foetus is seen to ‘belong’ to the commissioning parents in a number of countries—either because it is genetically related to them or created through gametes donated to them. By law, they therefore have more say on what happens to the embryos and the unborn foetus. The role of the surrogate is limited to ‘gestating’ the child. In other countries such as in the UK, the surrogate is the mother until she signs a parental order. Van Wichelen (2016) underlines that legal scholarship tries to identify between the rights of the surrogate, those of the intended parents, and of the foetus (and eventually the child). The distinct relationship between the surrogate mother and the foetus is not as removed as commissioning parents and the foetus and legal systems try to underline this in cases when there is an issue over the future of the foetus. To demonstrate this, some cases will be discussed in more detail in the following section. Van Wichelen maintains that epigenetic research demonstrates that maternal behaviour has an effect on the child not only in the womb but even after they are born as well. As she explains, nutrition, diet, environment, and stress affect or produce certain DNA loci in the child, what is referred to as soft heredity 358

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(citing Meloni 2016). Medical literature perused underlines that what happens in the womb has a lasting effect on the unborn, so in that case, the gestational surrogate is not just a carrier but also has authorship in relation to the foetus. It is my contention, therefore, that the surrogate mother should have a say on what happens to the foetus or child. Microchimerism, namely, the cell trafficking occurring between the surrogate and foetal body, puts into question the segregated authorship attributed to the commissioning parents (van Wichelen 2016), a sub-topic which will be explored in this chapter.

Screening Process of Surrogate Mothers, Egg, and Sperm Donors In countries or states where surrogacy is legal and regulated, there is a screening process to ensure that surrogate mothers and gamete donors do not have physical, mental, or moral issues (Lollo 2018). This will help commissioning parents evade potential problems down the line. Surrogate agencies working within the regulated market assess the potential surrogate mother’s mental and emotional stability (Lollo 2018). They ensure that intended parents share a similar mindset with surrogate mothers. This is especially crucial when it comes to issues relating to abortion. When it comes to gametes, intended parents pick donors who share certain attributes with them or attributes they value (European Centre for Law and Justice 2012). Surrogate mothers and women who give eggs are asked to fill in a questionnaire which collects data on a number of issues, such as physical appearance, medical information of applicant and her family, their socioeconomic background and that of their parents and siblings, their religion, talents, and other personal questions (European Centre for Law and Justice 2012). This screening ascertains that gamete donors do not have any disability and/or chronic diseases which can be passed on to the ‘designer’ babies.

Embryo Selection—Pre-Implantation Genetic Screening New technologies are used nowadays to detect genetic traits of the embryo before and during pregnancy. In this section, the focus is on pre-implantation genetic screening. Potential parents resort to these tests to investigate the health status, genetic makeup, or possible disability in a developing embryo (Ouellette 2015). Embryos produced through in-vitro fertilisation (IVF) methods are screened before being implanted in the USA, but it is illegal in countries such as Switzerland, Italy, France, and the UK (Bayefsky 2017). Rapa (2020) maintains that health authorities in different countries determine which genetic conditions embryos are tested for. Generally, the conditions tested for are those not compatible with life. Pre-implantation genetic testing, however, is limited to giving an indication of the physical and cognitive abilities of the resulting person, not whether or not they will have a good or bad life. This type of technology 359

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allows the medical profession and parents to decide which embryo is implanted and which is not.

Screening Tests During Pregnancy During pregnancy, a number of screening tests are carried out for trisomies 21 (Down syndrome), 18, and 13. Non-invasive prenatal screening can detect trisomies from placental or foetal DNA isolated from a maternal blood sample taken from a pregnant woman at about ten weeks (Estreich 2019). This screening is promoted by medical personnel to pregnant women. Prenatal diagnostic tests detect foetal abnormality, not its severity (Walker and van Zyl 2015). For example, tests can detect a cleft lip and/or palate, which can be an indication of underlying conditions, such as congenital heart disease, brain abnormality, and/or chromosomal anomalies. Prenatal diagnostic tests also help detect prenatal spina bifida. One needs to underline that the tests do not measure the severity of physical and mental disabilities of the foetus (Estreich 2019). Some of these tests are conducted during the first trimester. Blood serum tests, chorionic villus sampling, and others are used to identify sex, neural tube defects, deafness, trisomy 13, anencephaly, adult-onset genetic disorders (such as Huntington’s), the development of certain cancers, hair and eye colour, skin pigmentation, autism spectrum disorder. This information can be elicited at five weeks’ pregnancy (Ouellette 2015). More comprehensive foetal testing used to check for structural abnormalities, such as severe brain malformations, missing organs or limbs, and major heart defects, take place just before 20 weeks of gestation. Amniocentesis, which tests for genetic disorders or chromosomal abnormalities, takes place 15–20 weeks into the pregnancy. Prenatal and pre-implantation screening allow prospective parents and their medical teams to select which embryo to implant or which foetus to bring to term. In effect, the biosciences are being used to determine which embryos and foetuses will be given the opportunity to go to full term (van Wichelen citing Fassin 2009).

Abortion The time frame of the tests was mentioned in the preceding text because in the majority of jurisdictions, abortions after 24 weeks are restricted. Out of the 42 WHO member states in the European region, 88% use foetal impairment as ground for abortion (Lazdane 2005). Abortion within the first trimester—surgical or medical— poses minimal risk to the pregnant women, although there can still be complications (Forman 2015). It becomes riskier for the gestational carer after this time frame. In the subsequent sections, the focus will be on the right of the disabled child to be born in the context of surrogacy. Since the focus of this chapter is also surrogacy, there are multiple parents involved in the equation of whether a foetus with a disability or health conditions has the right to be born. Forman (2015) maintains that the onus should lie with the intended parents, who bear the physical, financial, and emotional burden of parenting a child with a disability. In certain cases, the surrogate intervenes. 360

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Contract Walker and van Zyl (2015) maintain that when intending parents resort to commercial surrogacy, the parties involved enter into contractual agreement that specifies the rights and responsibilities of those involved. Kern (2015, pp 349–351) maintains that a typical American surrogacy contract includes a statement of why the intended parents are unable to have a child themselves, a description of the method of surrogacy used, consent to adoption, cooperation with background information, consideration, surrogate’s assumption of the risk, involuntary termination of the pregnancy, voluntary termination of the pregnancy, medical examination, indicated medical care and amniocentesis, insurance, and voluntary signing. Forman (2015) adds that contracts serve to document both responsibilities and expectations of the parties concerned. Contracts do not feature in altruistic surrogacies. Here, there is an informal agreement which is based on the strength of the relationship between the people involved. Contracts define what is expected of the surrogate mother so that she produces a healthy baby/babies. By signing the contract, the surrogate mother renders herself liable to surveillance, scrutiny, and medical intervention (van Wichelen 2016). Contracts anticipate two potential scenarios, maintains Forman (2015). These include birth defects in the foetus and the maximum number of embryos which are to be transferred and carried to term. There are circumstances that lead to foetal reduction. Selective foetal reduction is often recommended to improve the outcome of the remaining foetuses when multiple foetuses are ascertained. Multiple births can lead to complications for both the gestational mother and the child/children (Bever 2016). The commissioning parents retain the right to decide when and which foetuses to terminate. Parties sometimes disagree over selective abortion where multiples or foetal abnormality are involved. The contract does not eradicate the surrogate’s right to make decisions where her right to bodily integrity is concerned, or that of the child she bears.

Cases Legal cases on surrogacy and abortion are rare. They are mainly reported in the USA, rather than Europe or Australia. This section will look at the few cases which have hit the headlines.

Crystal Kelley, Stanislav and Vesselina Stoyanov, and Baby S In March 2013 in Connecticut, Kelley made headlines when she refused to terminate a pregnancy she was undertaking for an infertile couple—Stanislav and Vesselina Stoyanov (Forman 2015). Repeated 3D ultrasound (Cummings 2018) had revealed that the foetus had several abnormalities—a cleft palate, brain cyst, and serious heart abnormalities (Forman 2015); 29-year-old Kelley did not want to abort the foetus, 361

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because her own daughter had been diagnosed with heart problems when was she still in her mother’s womb but these issues were resolved through surgery after birth (Cummings 2018). In this case, the medical team at Hartford Hospital, Connecticut, felt that it was more ‘humane’ to terminate when taking into consideration the impairments detected (Stoye 2013). Even with multiple surgeries, the child would still have only 25% chance of living a ‘normal’ life (Forman 2015). The Stoyanovs requested Kelley to abort. They cited the suffering the child would have to undergo during the multiple interventions it would need (Walker and van Zyl 2015). It is important to underline that Kelley had been implanted with an embryo produced via IVF and which was the biological child of the intended father (Stoye 2013) but not of the intended mother, since the egg used derived from a donor. In fact, the Stoyanovs already had two children with disabilities from the embryos created through this procedure (Forman 2015). Kelley refused to abort. She had already been a surrogate mother before, and the contract she had signed appeared similar to the previous one. She had signed it because she knew that the Stoyanovs were Catholic, already had two children with a disability, and so she had assumed that they were pro-life. The intended parents offered to increase her fee for the abortion to 10,000 dollars from the contracted 2,000. Kelley made a counteroffer of 15,000, which the intended parents turned down (Forman 2015). Kelley refused to abort, saying that she wanted to give ‘the baby girl a chance no one else was prepared to give her’ (Stoye 2013, n.p.). She was threatened with legal action if she did not abort since she had signed a contract which defined that the intended parents would resort to abortion if the foetus had severe abnormalities (Walker and van Zyl 2015). They threatened to sue her to get back the surrogacy fees, medical expenses, and legal fees. Time was running out for legal abortion. Kelley went to Michigan on the advice of her lawyer. Surrogacy in Michigan is prohibited by law, so here she was legally acknowledged as the mother. In the meantime, the intended parents filed to be recognised as legal guardians in Connecticut, a state which recognises surrogacy. Their claim was turned down because the wife was not the genetic mother (Walker and van Zyl 2015). The Stoyanovs proposed that they would relinquish the child to the state of Connecticut pursuant to the Safe Haven for Newborns Act (Forman 2015). Kelley was in the meantime arranging for a couple to adopt the child once it was born. Eventually, the intended parents agreed to allow the adoption to go through. While the court proceedings were still going on, Baby S was born with a holoprosencephaly, heterotaxy syndrome (Stoye 2013), two spleens (non-functioning), a misshapen ear, cleft lip and palate (Forman 2015). The girl was adopted. Seraphina died at age 8 in 2020 (Cohen 2020).

Pattaramon Chanbua, Baby Gammy, David and Wendy Farrell Pattaramon Chanbua, a Thai surrogate who was 21 years old at that time, agreed to become a surrogate mother for a fee of 18,577 US dollars (Poroshenko 2014). She had resorted to surrogacy to pay off her debts. The commissioning parents—David 362

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and Wendy Farrell, who were Australian—had approached a surrogacy agency via Facebook. The couple had tried to have children for years. Wendy Farrell had ten IVF cycles with no success (Piotrowski 2019). They resorted to a Thai surrogacy after seeing a documentary. Commercial surrogacy is illegal in Australia. David Farrell supplied his sperm to a South East company which used it to fertilise the eggs of a Thai donor (van Wichelen 2016). The embryo was successfully implanted. Pattaramon found out that one of the foetuses she was carrying had a disability when she was seven months pregnant. She said that the doctors, the surrogacy agency, and the intended parents had known that the foetus had problems when she was four months pregnant. She was requested to abort the foetus when she was seven months pregnant (Poroshenko 2014). She refused. When the babies were born prematurely in December 2013, it was found that the boy had Down syndrome and congenital heart problems. Although he was critically ill at birth, he survived (Piotrowski 2019). The intended parents took Pipah, the female child born, and left Gammy to be raised by the surrogate. The surrogate chose to raise the boy as her own.

Costa and Pavan v. Italy (2012) This case is not about surrogacy, per se, but about prenatal screening of embryos. It is relevant, however, because it illustrates the stand taken by the European Court for Human Rights concerning pre-implantation testing, embryo selection, and abortion. Costa and Pavan became aware that they were the healthy carriers of cystic fibrosis when their first child was born and was diagnosed with the disease (Global Health and Human Rights Database 2020a). They wanted to ensure that their second child was not born with this genetic disease by resorting to assisted reproduction technology (ART) and pre-implantation genetic diagnosis (PGD) to select an embryo which did not have this disease. They were precluded from using these techniques under Italian law since ART is only made available to sterile or infertile couples, or couples where the man suffers from a sexually transmittable viral disease that can be contracted by the female partner or the child. PGD was prohibited. Under Italian law, they were only offered the chance of resorting to termination of pregnancy on medical grounds when a prenatal test confirmed that their second child was also affected by cystic fibrosis. The complainants felt that their right to respect for their private and family life under Article 8 of the Convention had been violated. Article 8 of the Convention includes ‘the right to respect for the decision to become or not to become a parent’ (Global Health and Human Rights Database 2020a, p. 1). The European Court of Human Rights held that the Italian government had permitted the woman to abort a foetus on medical grounds but restricted the use of in vitro fertilisation when it came to selecting an embryo unaffected by a genetic disease in order to protect the dignity and freedom of conscience of the medical profession and preclude them from risking genetic selection. A similar decision had been taken by the European Court of Human Rights in the case of R. R. v. Poland (Global Health and Human Rights Database 2020b). 363

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Ms R. R., a Polish citizen, had brought an action against the Malopolska Regional Medical Insurance Fund and Dr S. B. for failing to provide a prenatal examination. The European Court of Human Rights noted that while the Medical Profession Act obliges doctors to give patients comprehensible information about their condition when there is the suspicion of genetic problems, the Medical Institutions Act gave patients the right to comprehensive information. This meant that the state in question, Poland, had the legal provisions which specified that pregnant women had the right to access information about their health and that of the foetus. The information, in this case, was not provided when there was a suspicion that something was wrong with the foetus at week 18, when it is acceptable for women to carry out abortion. The procrastination on the medical professions’ side came at a time when the woman in question could not resort to a termination (Global Health and Human Rights Database 2020b). In these two cases, the legal parents were also the physical and genetic parents. Issues get more complicated in surrogacy when the legal parents can include the gestating mother, as we shall see in the following section.

Human Rights Violations During Gestation Redondo, Valente, and Esteves (2017) maintain that human rights violations in surrogacy are more likely to happen during the gestation period and immediately after birth. In the section above, the two cases that focused on the merits of prenatal screening when compared to abortion were also included to underline that in the Costa and Pavan case, medical professionals left it to the biological parents to decide whether or not they carried to term a foetus carrying an inherited disease. In the other court case, the European Court for Human Rights felt that the mother should have been informed that there was something wrong with the foetus so that she had the option of abortion. The two cases were included to illustrate that trait selection where disability or congenital diseases are concerned is acceptable to the European Court for Human Rights. Sex selection is not. EU laws, namely, the Convention for the Protection of Human Rights, prohibit sex selection among embryos created through IVF (prohibition against choosing the sex of a baby created through in vitro fertilization, Convention on Human Rights and Biomedicine Article 14; also Parliamentary Assembly of the Council of Europe RES 1829(2011) and REC 1979(2011) on Prenatal Sex Selection EU laws, Convention for the Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine Preamble, 4 April 1997, C.E.T.S. No. 164), but not on the basis of disability or genetic disorders (European Centre for Law and Justice 2012). In this section, the focus is on what the best interests of the child are (UN Convention on the Rights of the Child, Article 8), who gets to decide, and when. This is because parental rights issues permeate surrogacy since there are multiple claims of parental rights. It is very unclear to determine who has superior parental rights 364

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for the reasons delineated before. Different people are involved, namely, the genetic parents, birth mother, and contracting parents (European Centre for Law and Justice 2012). Another issue concerning surrogacy is the fact that the best interests of the child, that of being provided with a loving and secure home, are being superseded by the wishes of the contracting parents to have children. The European Centre for Law and Justice (2012) maintains that in the case of surrogacy, the child ‘is created in the interests of the contracting parents’. The ECHR sustains that Article 8 of the Convention for the Protection of Human Rights stipulates the right to respect for ‘family life’ is not to provide a family with children (E. B. v. France, No. 43546/02 S8–9, ECHR S4) but to provide a child or children with a family (European Centre for Law and Justice 2012). In surrogacy, the child is created in the interests of the contracting parents, but at the same time, the fact that multiple persons are genetically or contractually linked to the child leads to multiple claims of parental rights.

ART and Prenatal Testing When a child or children are created in the interests of the commissioning parents, the latter hold ‘subconscious expectations that the child comes with a warranty’ (European Centre for Law and Justice 2012, p. 12). Since money has been invested in the child or children, embryo pre-implantation genetic screening is used to sort out which viable embryos to transfer and which to discard prior to implantation (Ouellette 2015). Prenatal is screening used to screen out any disability or congenital health issues an embryo might have. Ouellette (2015) decries the fact that scholars, policymakers, and advocates oppose selection based on traits such as sex, eye colour, or race yet favour selection based on disability, which is another trait. The cases mentioned in the previous section demonstrate that trait-based selection through abortion is viewed differently by law than trait-based screening conducted via IVF and PGD (see Costa and Pavan case). In the ECHR case, Italian doctors had issues with pre-implantation screening, but not with aborting a foetus with a disability. The ECHR had issues with the birth of a child with disability. The multiple actors involved in the cases mentioned earlier had conflicting objectives, while the biological parents and legislative bodies such as the ECtHR had the same goal—all wanted a ‘healthy’ baby. A lot of money is spent on diagnostic tests and technology which are used to detect and prevent the birth of a baby with a disability (Ouellette 2015) or congenital health issues. The primary goal of medical professions and public healthcare professions is to give birth to a ‘healthy’ baby. They use these tools to decide which lives are worth living (Hubbard 2006). Embryos or foetuses with a disability are not seen as a human person with the moral and legal rights to be born (Alvarez Manninen 2015)—their disability shears them of these rights. Advocates of prenatal genetic screening and other screening technologies maintain that it gives the medical community, policymakers, and intending 365

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parents the choice to do away with embryos or foetuses with chromosomal abnormalities and defects (Giric 2016). In some countries where it is legal, this type of selection takes place during ART before the surrogate is implanted with gametes chosen by the intending parents. Pre-implantation genetic diagnosis testing at this stage is carried out for Down syndrome, spina bifida, cystic fibrosis, fragile X, which can lead to mild to moderate disability clinical outcomes (Sexton 2006). Sexton (2006) underlines that Tay-Sachs diseases are priority conditions which are tested for. Hubbard (2006) notes that California laws require all pregnant women to carry out tests to detect for NTDs such as Down syndrome, trisomy 18 (Edwards syndrome), and trisomy 13 (Patau syndrome). Foltzenlogal (2020) underlines that the practice of non-invasive prenatal screen is also conducted in European countries. Blood tests are used to analyse the foetuses’ DNA, which is screened for genetic malformation. Pregnant women are socially and culturally pressured to resort to these tests—it is defined as the ‘responsible’ thing to do (Sexton 2006; Foltzenlogal 2020). Alvarez Manninen (2105) remarks on the low number of children born with Down syndrome in Western countries. When tests show that there is something wrong with the foetus, the medical community tends to emphasise the negative aspects of raising a child with a similar disability. Studies show that when an embryo tests positive for Down syndrome, in 85–90% of the cases, the foetus is aborted in the USA (Ouellette 2015, 212). Some doctors and counsellors sit down with prospective parents to analyse the severity and emotional and/or financial costs involved in raising a child with a disability (Sexton 2006). For policymakers and the medical professions, disability has ‘dysgenic undesirability’ (McKinney 2019, 272). Medical discourse and practice prioritise and justifies abortion when serious foetal abnormality is detected (Sharp and Earle 2002). McKinney (2019), Hubbard (2006), Foltzenlogal (2020), and Ouellette (2015) maintain that prenatal testing and pre-implantation genetic diagnosis are used as an ethical justification for a new form of liberal eugenics. This form of eugenics is fuelled by ableist social norms and market pressures spurred by prejudice and discrimination against persons with disabilities (Foltzenlogal 2020). Hubbard (2006) states that we do not kill people with a disability nowadays; we just do not allow them to be implanted or be born. The legislative framework within Western countries permits embryo selection and abortion in the presence of foetal impairment; it even extends the time frame when abortion can be conducted when the foetus is seen as having a disability or genetic condition (Foltzenlogal 2020). These practices reinforce and socially validate the idea that persons with a disability ought not to be born. States and supranational legal entities such as the ECtHR are in favour of screening out and destroying embryos and foetuses perceived as ‘abnormal’, which justifies the eugenics logic. Deborah Kaplan (cited by Alvarez Manninen 2015) maintains that society’s attitude towards prenatal testing reflects the general perception held by society that people with a disability face insurmountable difficulties in life. The underlying assumption is 366

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that embryo selection and abortion are the humane thing to protect the future child from pain, suffering, or fatal illness in future life (Ouellette 2015). It is presumed that life with a disability is a life without options, maintains McKinney (2019). It is also assumed that the quality and enjoyment of life for people with disability is inferior (Sexton 2006).

Rights of Intended Parents The intended or commissioning parents have the right to protect the health of the unborn baby (Redondo et al. 2017). Medical judgements can, however, turn a wanted baby into an unwanted embryo or foetus (Sexton 2006). For intending parents, the non-viability of the embryos or foetal impairment is a tragedy. In this case, they have spent a lot of money to get the ‘perfect’ baby, and this exercise has misfired. Trait-based selection is more likely to be linked with surrogacy because the commissioning parents have a particular baby in mind. The intended parents choose the surrogate, the egg and/or sperm donor, and the viable embryos to implant. They feel financially and emotionally cheated when they learn that the babies they have invested in are ‘faulty’. Article 9(1) of the UN Convention on the Rights of the Child (CRC) maintains that the parents have the right to protect the health of the baby only when the child in question has a biological link with one of the parents (Redondo, Valente, and Esteves 2017), and they get this right when the family already exists, and not when they are trying to form one. Another issue is who is the legal parent when there may be up to nine people involved in surrogacy. Surrogacy contracts (Aznar and Zunin 2015) stipulate that genetic parents retain the right to resort to abortion or selective reduction when medical experts diagnose the embryo or foetus with having genetic or physical abnormalities, or the fact that multiple foetuses can have a detrimental effect on the well-being of the other foetuses involved in the pregnancy. This condition laid out in the surrogacy contract is not always enforceable by law. Selective reduction is also resorted to when the embryo/foetus does not have traits the parents are looking for, or there is a change in the intended parents’ financial situation (Kelley in Cummings 2018, 114), or when the relationship between the intending parents breaks up (as in the case of Baby Manji mentioned in Redondo et al. 2017). The focus in this chapter is, however, on foetuses/embryos with a disability.

Multiple Parents Countries which allow surrogacy or tolerate it adopt a pre- or post-approval system for parents who engage in surrogacy (Redondo et al. 2017). A pre-approval system is more likely to be found in those American states where surrogacy is legal. As the legal parents, especially when they are genetically related to the foetus, they determine when the foetus is to be aborted or when to terminate the contract (Azner and 367

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Zunin 2015). The surrogate has to fulfil conditions laid out in the contract under penalty of breach of contract. In states which adopt the post-approval approach, the commissioning parents are legally assigned this status when they adopt the child after birth. In Britain, for example, the surrogate is the legal mother until this right is transferred to the intending parent when they apply for the adoption of the child/ren after birth or get a parental order giving them legal rights (Government of UK 2020). The commissioning parents are regarded as the legal parents in surrogacy by the European Court for Human Rights (Redondo et al. 2017) and, in the USA, states where surrogacy is legal or tolerated (Kern 2015). In these places, surrogacy contracts are drawn underlining what should be done in the case of foetal malformation (Redondo et al. 2017). In reality, when the foetus or child is diagnosed with a disability, there is a contestation between the rights of the genetic parents, the surrogate mother, and the foetus or child. In countries where abortion is allowed, no court can order a surrogate to comply with a provision compelling her to abort (Forman 2015). Any court in the Global North would see this as an interference with a surrogate’s privacy and personal liberty even when the foetus is not genetically related to the surrogate. Not even the partner or husband of the surrogate can demand or prevent abortion in surrogate or non-surrogate pregnancies (Walkder and van Zyl 2015). The pregnant woman has the right to decide what to do with the foetus regardless of her genetic or social relationship to the foetus. She has the prerogative to decide whether or not to go on with the pregnancy, even if the intended parents can take her to court on breach of processing of contract (Lollo 2018) or the social opprobrium she will face from people who might feel that her act led the child born with a disability to suffer physical and social pain (Hubbard 2006). As underlined before, the surrogate is not just a commodified breeder undergoing biological labour (Vora 2015). In the cases mentioned before, some refused to abort the foetus. In the case of Kelley, she wanted to give foetus S a chance but could not afford to take care of her herself, so she gave it up for adoption. In the case of Baby Gammy, the surrogate raised him as her own when the intended parents took the ‘normal’ child and left the baby with Down syndrome behind. In the previous section, it was underlined that the surrogate is not just a gestational oven, but physical and emotional links form between the foetus and surrogate during the pregnancy. The physical link, microchimerism, was also mentioned. This physical and emotional link, compounded with pro-life ethical considerations, means that the surrogate looks out for the interest of the child and not of the commissioning parents. She can be held liable for reneging on the contract for not complying with the abortion clause and producing a child with a disability. At the same time, the European Centre for Law and Justice (2012, p. 24) underlines that no ‘surrogacy arrangement is enforceable by or against any of the persons making it’, according to Section 1A of the Surrogacy Arrangements Act, as modified by the Human Fertilisation and Embryology Act 1990. 368

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In the cases cited here and others, the surrogate mother was more likely to protect the foetus when this is adjudicated as having a disability. In such cases, her links to the unborn child were closer than that of the parents linked to this entity via a contract. The Council of Europe Convention for the Protection of Human Rights and Fundamental Freedoms, when speaking about the law of adoption, maintains that it is contrary to that law to permit a mother to consent to the adoption of her child before she has given birth (Convention on the Legal Status of Children Born out of Wedlock, art 2, Oct 15, 1975, C.E.T.S. No. 85). In surrogacy, the birth mother should also be presumed to be the legal mother of the child, since it is clear from the number of cases on this topic that they are more likely to promote the unborn child’s interests. Examples include Levesque in Canada, who refused to abort a foetus diagnosed with Down syndrome but had to give in when the commissioning parents refused to adopt the child (Walker and van Zyl 2015). Another case involved a British surrogate who gave birth to twins and at birth one of the twins was diagnosed with mytonic dystrophy. The intending parents did not want to raise the child, so the surrogate and her husband raised the baby (Bains 2014). There is also the TExA surrogate who refused to abort the foetus when it was diagnosed with hypoplastic cleft heart syndrome. The commissioning parents consented to life-saving medical treatment when the baby was born but refused to pay her because they accused her of violating the contract by refusing to abort (Cummings 2018).

Disability Rights Advocates and Pro-Life Advocates vs Pro-Choice Advocates Embryo selection and abortion on grounds of impairment violate the Convention on the Rights of Persons with Disabilities (Art. 4, 5, 8) (Puppinck 2018). This type of eugenic selection is often based on inaccurate diagnosis and promotes stereotyped notions that disability is incompatible with life, disability rights advocates maintain. The Committee on the Rights of Persons with Disabilities within the European Centre for Law and Justice (ECLJ) opposes the Human Rights’ Committee interpretation of ‘right to life’ as implying the right to abortion when the foetus suffers from fatal impairment. The ECJL opposes prenatal eugenics, underlining that the right to life and to care must be guaranteed to every person. The disability rights movement around the world underlines that legal and medical decisions as to who should be or not be born are political (McKinney 2019).

Children’s Right to Know Their Origins and Their Biological History Commissioning parents spend a substantial amount of money to ensure that their future child or children have ‘attractive traits’ (Rotabi, Mapp and Cheney 2017, p. 65), and choose gamete donors they hope will enable them to achieve social as well as academic success (European Centre for Law and Justice 2012). Money changes 369

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hands in an attempt to find the right donors and surrogate. Rotabi et al. (2017, p. 69) feel that all these transactions go against the Optional Protocol on the sale of children Article 2(a), which states that the ‘sale of children means any act or transaction whereby a child is transferred by any person or group of persons to another for remuneration or any other consideration’. Children born out of surrogacy are also denied the right to know their biological origins and genetic history (Puppinck 2019; Foltzenlogal 2019). The CRC Article 8 states that ‘every child has a right to preserve her or his identity, including nationality, name, and family relations’ (European Centre for Law and Justice 2012, p. 16). During their life, they will need genetic information related to their health and disease susceptibility. Not knowing who the gamete donors or traditional surrogates were could lead to unintentional incest. Having this knowledge would allow them to know if they have any siblings (The Center for Bioethics and Culture Network 2019). A growing number of countries are enacting laws allowing children access to identifying information about their gamete donors. Crossborder, medically assisted reproduction could lead to challenges through this right to know (Ravitsky 2017).

Conclusion Surrogacy fulfils the desire of adults to have children (European Centre for Law and Justice (2012). The desire for a child, though, leads to competing interests, including the importance of procreative liberty; individual choice; parental obligations to ensure the health of developing children; the prevention of pain, suffering, or fatal illness in future children; the unknown risks of creating designer babies; the loss of foetal life; the state’s interest in prospective life; and the effect on family relationships. To the extent they factor in the debate, disability-related issues are just one factor. (Ouellette 2015, pp. 213–214). This is an important issue in surrogacy, where parents are ready to fork out thousands of dollars or euros to get the baby they have dreamed about. The UN Convention on the Rights of Persons with Disabilities (CRPD) retains that states are obliged to promote the rights of children born with a disability, but it does not protect their right to be born. The CRPD promotes equal inclusion in society as a fundamental right, but to do so, one needs to be allowed to be born. In this case, the child’s right to life (Article 6(1) of the CRC and Article 10 of the CRPD) is being undermined. In surrogacy, so is the right to know and be cared for by their parents (Article 6(1) CRC) as well as the child’s right not to be separated from their parents against their will (Article 9 of CRC) (Rotabi et al. 2017). Rotabi et al. (2017, p. 66, citing UNICEF n.d.) also mention Article 3 (CRC), which states that the ‘best interests of children must be the primary concern in making decisions that may affect them. All adults should do what is best for children. When adults make decisions, they should think about how their decisions will affect children’. In surrogacy, the onus is on the parent/s’ rights to a child rather than the best interests of any children that might ensue. 370

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The European Court of Human Rights considers cases concerning gestational surrogacy under Article 8 (right to respect for private and family life) of the European Convention on Human Rights. For the text of this article and further information about these court cases see the ECHR factsheet on https://www.echr.coe.int/Documents/ FS_Surrogacy_eng.pdf The Center for Bioethics and Human Dignity, based at Trinity International University in Illinois, explores the intersection of biomedicine, biotechnology, and humanity. On their website, one can find various resources on issues of bioethics, including the ones discussed in this chapter. The website can be accessed from https://cbhd.org/ The Center for Bioethics and Culture Network is based in California. It also addresses bioethical issues and how they affect humanity, with a focus on those who are most vulnerable. Resources include films, podcasts, and writings. The website can be access from https://cbc-network.org/ A film that explores issues around surrogacy is ‘The Surrogate’ (Director: Jeremy Hersh, 2021). A review of this film from The Guardian (‘When a child is born. The Film lifting the lid on surrogacy race and disability’ by Cath Clarke published on 24 June  2021) can be read from this link https://www.theguardian.com/film/2021/ jun/24/when-a-child-is-born-the-film-lifting-the-lid-on-surrogacy-race-and-disability. The review also provides a link to the film trailer.

References Allan, S. 2015. The surrogate in commercial surrogacy: Legal and ethical considerations. In P. Gerber and K. O’Byrne (eds.), Surrogacy, law and human rights. New York: Ashgate Publishing Ltd., pp. 113–143. Alvarez Manninen, B. 2015. The replaceable fetus: A reflection on abortion and disability. Disabilty Studies Quarterly 35(1). Aznar, J. and Zunin, M. 2015. Surrogacy, rental or voluntary maternity. Does it violate the dignity of the gestational mother and injure the rights of the child? Observatorio de bioetica. Instituto Ciencias de la vida. November 26. [Accessed on 28 November 2021] Available from: https:// www.observatoriobioetica.org/2015/11/maternidad-subrogada-o-voluntaria/1090 Bains, I. 2014. ‘I don’t want a dribbling cabbage for a daughter’: What a mother told her surrogate before rejecting disabled baby girl. Mail Online. 26 August. [online] [Accessed on 28 November 2021] Available from: www.dailymail.co.uk/news/article-2734374/Surrogate-mother-twins-gave-birth-disabled-girl-told-woman-intended-child-didnt-wantdribbling-cabbage.html Bayefsky, M. J. 2017. Comparative preimplantation genetic diagnosis policy in Europe and the USA and its implications for reproductive tourism. Reproductive Biomedicine & Society. 23 February. [online] [Accessed on 28 November 2021] Available from: https://www.ncbi. nlm.nih.gov/pmc/articles/PMC5612618/ Bever, L. 2016. ‘I am pro-life’: A surrogate mother’s stand against ‘reducing’ her triplets. The Washington Post. 7 January. [online] [Accessed on 28 November 2021] Available from: www.washingtonpost.com/news/morning-mix/wp/2016/01/07/i-am-not-having-anabortion-a-surrogate-mothers-stand-against-reducing-her-triplets/

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JosAnn Cutajar Cohen, E. 2020. Girl in famous surrogacy case dies at age 8. CNN. 5 August. [online] [Accessed on 28 November 2021] Available from: https://edition.cnn.com/2020/08/04/ health/seraphina-surrogate-death/ Cummings, E. 2018. The [Un]Enforcability of abortion and selective reduction provisions in surrogacy agreements. Cumberland Law Review 49(1), pp. 99–143. Estreich, G. 2019. Fables and futures. Biotechnology, disability and the stories we tell ourselves. Cambridge: The MIT Press. European Centre for Law and Justice. 2012. Surrogate motherhood: A violation of human rights. Report presented at the Council of Europe Strasbourg. 26 April. [online] [Accessed on 28 November 2021] Available from: www.ieb-eib.org/ancien-site/pdf/surrogacymotherhood-icjl.pdf Fassin, D. 2009. Another politics of life is possible. Theory, Culture & Society 26(5), pp. 44–60. Foltzenlogal, C. 2019. Pace recommends the waiving of anonymity for all future human gamete donations. European Centre for Law and Justice. 12 April. [online] [Accessed on 28 November 2021] Available from: https://pace.coe.int/en/news/7459/ pace-recommends-the-waiving-of-anonymity-for-all-future-human-gamete-donations Foltzenlogal, C. 2020. SR on the rights of persons with disabilities denounces liberal eugenics. European Centre for Law and Justice, 12 April. [online] [Accessed on 28 November 2021] Available from: https://eclj.org/eugenics/hrc/droits-des-personneshandicapees--un-rapport-denonce-leugenisme-liberal?lng=en Forman, D. L. 2015. Abortion clauses in surrogacy contracts: Insights from a case study. Family Law Quarterly 49(1), pp. 29–53. Giric, S. 2016. Strange bedfellows: Anti-abortion and disability rights advocacy. Journal of Law and the Biosciences, pp. 736–742. Global Health and Human Rights Database. 2020a. Costa and Pavan v. Italy. [online] [Accessed on 28 November 2021] Available from: www.globalhealthrights.org/health-topics/ chronic-diseases/costa-and-pavan-v-italy/ Global Health and Human Rights Database. 2020b. R. R. v. Poland. [online] [Accessed on 28 November 2020] Available from: www.globalhealthrights.org/health-topics/ health-care-and-health-services/r-r-v-poland-2/ Government of UK. 2020. Surrogacy: legal rights of parents and surrogates. [online] [Accessed on 28 December 202] Available from: www.gov.uk/legal-rights-when-using-surrogatesand-donors#:~:text=Surrogacy%20agreements%20are%20not%20enforceable,except%20 for%20their%20reasonable%20expenses Hubbard, R. 2006. Abortion and Disability. Who Should and Who Should not Inhabit the World?. In J. D. Lennard (ed.), The disability studies reader. New York: Routledge, Taylor & Francis Group, pp. 93–103. Kern, B. 2015. You are obligated to terminate this pregnancy immediately: The contractual obligations of a surrogate to abort her pregnancy. Women’s Rights Law Reporter 36(3–4), pp. 344–374. Lazdane, G. 2005. Abortion in Europe: Ten years after cairo. Entre Nous. The European Magazine for Sexual and Reproductive Health 59, pp. 4–5. Lollo, S. 2018. Our baby, her choices: The need for enforcement of gestational surrogate contracts. Family Court Review 56(1), pp. 180–194. McKinney, C. 2019. A good abortion is a tragic abortion: Fit motherhood and disability stigma. Hypatia 34(2), pp. 266–284. O’Reilly, K. 2016. When parents and surrogates disagree on abortion. The Atlantic. 18 February. [online] [Accessed on 28 November 2021] Available from: www.theatlantic.com/ health/archive/2016/02/surrogacy-contract-melissa-cook/463323/ Ouellette, A. 2015. Selection against disability: Abortion, ART, and Access. Journal of Law, Medicine and Ethics 43(2), pp. 211–223. Piotrowski, D. 2019. How Down syndrome boy left behind in Thailand while his health sister was taken to Australia is thriving and has a new name—as the child’s sex offender launches

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Clash of Competing Rights in Surrogacy a law suit. Mail Online. 2 December. [online] [Accessed on 28 November 2021] Available from: www.dailymail.co.uk/news/article-7712763/Baby-Gammy-five-years-DavidFarnell-sues-asbestos-poisoning.html Poroshenko, P. 2014. Baby Gammy: A tale of surrogacy and morality. The straits time. 4 August. [online] [Accessed on 28 November 2021] Available from: www.straitstimes.com/asia/ se-asia/baby-gammy-a-tale-of-surrogacy-and-morality Puppinck, G. 2018. Don’t kill disabled people. The European Centre for Law and Justice. [online] [Accessed on 28 November 2021] Available from: https://eclj.org/eugenics/un/le-comitdes-droits-des-personnes-handicapes-prend-position-contre-lavortement-et-leuthanasiedes-personnes-handicapes Puppinck, G. 2019. The ideological roots of the rench bioethics bill. The European Centre for Law and Justice. [online] [Accessed on 28 November 2021] Available from: https://eclj.org/ eugenics/french-institutions/les-racines-idologiques-du-projet-franais-de-loi-biothique Rapa, M. J. 2020. Choosing who is to exist. The Malta Independent. 27 February. [online] [Accessed on 28 November 2021] Available from: www.independent.com.mt/ articles/2020-02-27/local-news/Choosing-who-is-to-exist-6736220058 Ravitsky, V. 2017. The right to know one’s genetic origins and cross-border medically assisted reproduction. Israel Journal of Health Policy Research 6(3). [No pagination]. Redondo, F., Valente, F. and Esteves, M. J. 2017. Surrogacy: A clash of competing rights. Themis 2017 Semi-Final B. International European Judicial Cooperation in Civil Matters—European Family. [online] [Accessed on 28 November 2021] Available from: www. ejtn.eu/Documents/Team%20Portugal%202%20semi%20final%20B.pdf Rotabi, K. S., Mapp, S. and Cheney, K. L. 2017. Regulating commercial global surrogacy: The best interests of the child. Journal of Human Rights Social Work 2, pp. 64–73. Sharp, K. and Earle, S. 2002. Feminism, abortion and disability: Irreconciliable differences? Disability & Society 17(2), pp. 137–145. Stoye, E. 2013. US surrogacy dispute: surrogate refuses to abort at genetic parents’ request. BioNews. 11 March. [online] [Accessed on 28 November 2021] Available from: www. bionews.org.uk/page_94027 Van Wichelen, S. 2016. Postgenomics and biolegitimacy: Legitimation work in transnational surrogacy. Australian Feminist Studies 31(88), pp. 176–182. Vora, K. 2015. Re-imagining Reproduction: Unsettling Metaphors in the History of Imperial Science and Commercial Surrogacy in India. Somatechnics 5(1), pp. 88–103. [online] [Accessed on 28 November 2021] Available from: https://www.euppublishing.com/doi/ abs/10.3366/soma.2015.0149?download=true&journalCode=soma Walker, R. and van Zyl, L. 2015. Surrogate motherhood and abortion for fetal abnormality. Bioethics 29, pp. 529–535. https://doi.org/10.1111/bioe.12157

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21 FRAMING DOES MATTER How Health Professionals can Empower Disabled Children and their Families Claire Reinhardt and Amy Robasse

Introduction Typically, more of a disabled child’s life is spent in the medical system than a nondisabled child’s. How they are treated in that system merits examination to avoid stigma and dehumanisation. Both authors are disabled mothers with disabled children, and as a result, some of this chapter is presented autobiographically—as our own respective experiences. We acknowledge the good work and good intentions of healthcare workers and also focus on the importance of changing the way the medical community shares disability diagnoses and presents follow-up disability-related care. While some of the issues are relevant for disabled adults, this chapter focuses on disabled children specifically and addresses how health professionals can influence both the child and the family. We discuss the problematic history of disability and medicine, implicit bias against disability, as well as the social and medical models of disability. The social model was chosen because it places the onus to change on society as opposed to the disabled child. Lastly, there are recommended actions for health professionals. Shifting how disability diagnosis is presented and how ongoing care is offered has the ability to create significant change for the disability community on a macro and a micro level.

Language Choice Health professionals, in the context of this chapter, include doctors, therapists, home health- and school-based aides, and others working in a healthcare role with chronically ill or disabled children. With the acknowledgement that not all children live with their parents and other caregivers often have a parental role, references to parents include other primary caregivers of the child with whom the child lives. It is important to address the use of identifying language when dealing with a marginalised group. We intermingle people-first and disability-first language to 374

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support the autonomy and choice of all members of our community. Most health organisations recommend people-first language—‘people with disabilities’—while many disabled activists and disability studies scholars prefer identity first-language— ‘disabled’—to establish disability as a term of pride, fighting against the shame that medicalisation of disability places on us (Dunn and Andrews 2015). In the case of the disability rights community and the exploration of the social model, there is a history of standing up to oppressive culture by adopting language that was previously considered derogatory or degrading—disabled, gimp, deaf—to show pride in the very aspect of their identity that is the basis of judgement by the non-disabled (Mitchell and Snyder 2000). In this sense, ‘disabled’ as an adjective is not seen as offensive, pejorative, or sign of a limitation but, rather, as a term of pride and signal of unity among our community; it emphasises difference as opposed to deviance from an imaginary norm (Brueggemann 2013).

Brief History of Disability and Medicine Disability and medicine have a complicated and complex history. In the 1910s, it was legal for doctors in the United States to let an infant die by starvation and lack of care if they thought the child would be a drain on society—some doctors thought ‘deformed’ infants fit into this category (Black 2012). Great Britain’s and the United States’ eugenics movements included doctors who argued that ‘feebleminded’ people are nothing more than burdens (Rydell 2012). Eugenicists in the United States fought to sterilise and ‘euthanise’ ‘the feebleminded’ in an attempt to advance the gene pool (Black 2012). ‘Mental defective’ eventually replaced ‘feebleminded’, allowing medical professionals to cast a wider net in the patients they segregated in institutions (Rydell 2012). In our experience, most health professionals are not aware of this history, its role in the social construction of disability, or the active and complicit role of health professionals during those times. More recently, Lowit and Averill (2014) interviewed 13 fathers who described the Down syndrome diagnosis they received at their children’s respective births as ‘insensitive and pessimistic’. These fathers—like many parents of disabled children—stated their belief that, with more preparation and training, health professionals could better serve families by providing the initial diagnosis with a more optimistic approach (Lowit and Averill 2014). In a short essay sharing her internal judgements while supporting a poor, not-well-educated family of a critically ill newborn, neonatologist and clinical ethicist Annie Janvier (2011) shares that she wants more for her children than what their possibility would be if disabled. This is a common perspective of physicians without disabled children, and it highlights implicit bias against disability. In some cases, parents go against their own instincts, desires, or views on best strategies of care to acquiesce to what the professionals suggest (Hodge 2006), so addressing bias is essential. Bioethicist Felicia Cohn (2011) notes that the dynamic is often that health professionals are experts whose knowledge and authority need to be respected while families are scared and in need of direction. One could conclude that, because parents are 375

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on the weaker side of that dynamic, many do not think about advocating for a kinder way to interact with their child. Parents who question advice from their child’s medical team can be considered ignorant, uneducated, and irresponsible (Cohn 2011). We have heard parents at support meetings share worries about upsetting doctors who have the power to write prescriptions, order equipment, or report a parent to children’s services. Maintaining a friendly relationship can also feel important when their child is at the doctor often.

Implicit Bias Against Disability It is relatively common for parents and health professionals to have unconscious bias against disability. A large proportion of society deeply holds the ableist view that being disabled is worse than being non-disabled, and has built its systems around this belief in such a way as to reinforce that view (McRuer 2006). Campbell (2001) discusses ableism as the way in which the world is built around a fictional, idealised, able-bodied ‘norm’ to which disabled children are negatively compared, thus being inherently disadvantaged. Furthermore, there is a cultural idea that the disabled child is essentially different, more vulnerable than and inferior to their non-disabled peers (Hodge and Runswick 2013). Currently, most of what the public—including many disabled children and their families—thinks about disabilities comes from what they experience through the media (Mitchell and Snyder 2000). Adaptive sports coverage is practically non-existent—with the exception of the Paralympics. Paralympians themselves are often presented as having overcome their disability; this reinforces the trope that disability itself is tragic and something separate that an individual is battling (Smith and Bundon 2018). When disability is included in media, disability stereotypes abound, such as: disabled children as a burden, pitiable and pathetic, unable to have a successful life, and the supercrip image (Black and Pretes 2007). The stereotype of disability as a burden does not address that disabled children are often able to achieve the same things as non-disabled children with proper supports, or that they might not even have such aspirations. Like well-meaning medical professionals, a well-meaning family that does not know to question the dominant culture’s presentation of disability may have attitudes towards disability and resulting behaviour that are likely to have a significant impact on a child’s self-concept and relationship to their impairment. Consider for a moment parents who have no background or education in the disability rights movement, disability studies, or disability legislation. In this scenario, they are more likely to frame their child’s disability with cultural stereotypes because that is all they know.

Unconscious Bias of Health Professionals and Disability Organisations Health professionals are generally the first to present a diagnosis of disability and therefore have the potential to set a different tone to how disability is viewed and treated. However, they themselves may not know of positive and affirming views of 376

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disability that hold disabled people in high esteem (Kothari and Kirschner 2006). When comparing reporting between disabled and chronically ill children, their parents, and their doctors, children tend to rate health-related quality of living highest, their parents next, and their doctors the lowest, with biggest differences in the cases of more severe disabilities (Morrow et al. 2012). It is noteworthy that doctors reported pain, severity of symptoms, and social, cognitive, and emotional development as less than children and their parents as these are all signposts of value within the medical system and could potentially impact treatment recommendations (Morrow et al. 2012). While most health professionals are not overtly ableist, most hold implicit ableist views—have high levels of implicit bias against disability (Van Puymbrouck, Friedman, and Feldner 2020; FitzGerald and Hurst 2017). A child being told, both explicitly and covertly, for their entire life that they need to be fixed, changed, or cured is dehumanising. Deegan (2005, p. 8) notes that ‘[s]ystemic dehumanization happens in many ways and it is rarely intended to be mean or cruel. In fact, systematic dehumanization . . . is often disguised . . . as help’. This is certainly the case for a disabled child in the medical arena, where treatment and therapy are offered with the intent to help and cures are sought to eliminate perceived future suffering. In fact, while some interventions are themselves problematic, in most cases treatments and therapies are supportive and offered with good intentions, but the framing in which they are offered has the potential to be problematic. The normative, deficit-based way both the treatment and impairment are presented can unintentionally create stigma and other psychological suffering. In actuality, there is no normal body from which the disabled deviates, but there is a tendency of non-disabled people to assume disabled people yearn to be non-disabled (McRuer 2006). For example, many doctors unconsciously see respirators, feeding tubes, and other disability-related needs as tragic as opposed to being vital tools (Janz 2019). It is easy to imagine that if a health professional believes a necessary tool is tragic, this might drive certain behaviour or attitudes towards people who use said tool. Health professionals presenting a new disability tool and offering ongoing care through lenses of pity and tragedy could lead to a loss of joy and happiness for a disabled child and their family. Parents sometimes take time to process and accept their new life, and the speed with which that happens is directly tied to how the initial diagnosis is presented; those who received it with empathy, a team mentality, and through the lens of a life of possibility received the diagnosis better than those who did not (Graungaard and Skov 2007). In disabled children’s parenting groups, we have heard many parents share regrets that they saw the disability more than the child until they came to an acceptance. In this sense, health professionals can influence parental perspective and, therefore, a child’s experiences through their own attitude towards disability. On top of trying to navigate a medical system, parents are often thrown into several exploitative bureaucratic systems. These systems are often required to get and maintain services, take tremendous time and patience to navigate successfully, and parents must advocate within them for their child’s health-related needs (Longmore 2003). However, without the language to identify and process the exploitative nature 377

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of these systems, parents are less likely to recognise the systemic ableism these processes represent. They may be in the position to ‘prove’ the severity of their child’s disability, which might reinforce stereotypes of disability as a burden or as pitiable. In these interactions, parents are in a unique position to reinforce or to challenge explicit and implicit ableism within the system. Bias can also be seen in disability-focused organisations, through their material, lack of disability representation in research, and on boards of directors. Organisations like Autism Speaks perpetuate various disability stereotypes, such as pitiable and pathetic, burdensome, and a life not worth living (Autistic Self-Advocacy Network 2009). Along with 60 disability rights groups, Autistic Self-Advocacy Network (2009) penned a letter addressing some of Autism Speaks’ offensive material. In it, they challenged the idea that autism should be feared, stated that their lives are worth living just as they are, and said support in accessing their civil rights is always welcome. Many organisations with the mission of supporting disabled people’s inclusion have little to no disabled people in leadership positions, or their positions are token disabled positions (Radermacher et al. 2010). A likely explanation is the mistaken belief that disabled people are unqualified or unable to hold these roles—this is dangerous because of the erroneous belief that disabled people have a strong preference to be non-disabled (McRuer 2006). The aforementioned letter to Autism Speaks also highlights the lack of inclusion in the organisation, which has no autistic people on the board of directors. What Fine and Asch (1998) discuss over two decades ago is still relevant today—researchers assume disabled people are coping with the tragedy of disability instead of asking how disabled people frame their own experience.

Applying Disability Models Looking at medical care through medical model and social model lenses shows us that, from an ethics perspective, medicine that is careful not to perpetuate disabilityrelated stigma is the only appropriate choice. Mike Oliver (1990) first wrote about the medical model’s focus on impairments juxtaposed against the social model’s focus on changing society. The medical model encourages ‘fixing’ or ‘hiding’ disability (commonly known as passing) and has laid the groundwork for the ways in which most disabled children currently receive medical care. The social model suggests that if barriers are removed, each child, disabled or not, should be able to access empowering medical care. Beyond removing barriers, most medical associations and health professionals who shift their respective perspectives on disability would promote significant change from a social model perspective.

Medical Model Within the medical model, a child’s impairment is not seen as an inherent aspect of the child but as something to be fixed with rehabilitation, medical interventions, and long-term search for a cure (Shakespeare 2006). Often with a genuine desire to help people, health professionals assess what a disabled child is and is not doing compared 378

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to the so-called norm and score their abilities in a way that highlights deficits, setting up the child to be compared negatively to their peers (Kapp et al. 2012). The healthcare team uses the results from these assessments to determine medical, therapy, and equipment needs, with the specific goal of addressing identified deficits. The focus often shifts from the individual to the impairment, and the expectation is that a disabled child strives to be as non-disabled as possible. However, healthcare teams treat more than bodies; they also treat the people who inhabit those bodies. When a child is not seen beyond their diagnosis and their diagnosis is treated as inherently bad and needing to be fixed, there is a negative impact on their self-esteem. Sapon-Shevin (2007, p. 87) writes, ‘Self-esteem is not a function of how we compare to others. Self-esteem is a function of how we are responded to’. While self-image is extremely important, it is also a health concern, as Du Mont and Forte (2016) found that when people feel they are on the receiving end of discrimination, their physical health suffers. Considering, it is doubly important for health professionals to be aware and careful of how they respond to a disabled child and what unintentional messages about disability they might send.

Social Model The social model lens views disability as a social construct, with impairments being divergents from what is considered normal function and the disability itself caused by physical and social barriers that have been erected or failed to have been removed (Shakespeare 2006). This can be seen in the medical system when a doctor diagnoses or fails to diagnose a child, the supports or services offered to that child so they can access their world, and the degree to which that child is given agency. The social model ideal is that a disabled child and their family accept any impairments, while in parallel, any barriers to access or discrimination are eliminated from society, ensuring an equitable experience (Thomas 2010). We believe that, under the social model, being non-disabled is no longer viewed as the ideal, the comfort of one group no longer prioritised, everyone is seen as they are, and well-being is equally respected and prioritised. An impairment would be treated as an inherent part of a disabled child, and their family would receive support, resources, and tools (Donaldson 2017). While the same solutions might be suggested or sought, they would be offered within the framework of honouring the child and building off their current skills instead of with the end goal of ‘normalising’ them. Disabled children would be given space and encouragement to find a way of doing things that works for them, regardless of what it looks or sounds like to others. Using ‘proper’ form during movements can be important to avoid pain or surgery, but many times a certain way is taught because it is how non-disabled children do it and therefore is what society expects. This ‘normative shadow’—the knowledge that not aligning with normative expectations makes others uncomfortable—can loom over disabled children as a feeling of being judged as unacceptable (Overboe 2004). Amy will never forget when a physical therapist told her now-adult but then 7-year-old daughter that she must learn to walk with her back straight or no boy would want 379

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to marry her. Amy knew this attitude was unacceptable, and she was able to remove her child from that therapist’s care. Parents with no exposure to the social model of disability might not react in the same way, as our entire society is built around seeing a non-disabled child as doing it right while seeing a disabled child as doing it wrong. Introducing parents to the social model of disability allows them to explore their child’s disability and their place in the world from a more empowering viewpoint, one that allows them to feel comfortable speaking up when a provider is acting inappropriately and not be afraid of losing their child’s services.

A New Approach for Health Professionals Typically, health professionals—even those who consider disabled children as happy and with fulfilling lives—see disability as something to be overcome or fixed. On the one hand, this can be understood, because health professionals are trained to find and fix problems in the human body. Medical tests and diagnoses typically involve statistics and, therefore, norms, deficits, and deviations (Wendell 2013). We believe that, in many instances, this statistical model—or using the norm compared to a potential deviant—makes sense from a medical perspective. Blood sugar levels are a good example; knowing normal levels simplifies the process of identifying diabetes and providing treatment. Having elevated sugars is not marginalising in and of itself. However, the necessary lifestyle changes, such as a child not being able to eat birthday cake or seeing the nurse during class time for glucose checks, could create marginalisation. Obviously, the sugar levels need to be regulated—a child could die otherwise—but changing the environment around the child could greatly improve their feeling of belonging. Health professionals also often use the norm/deviant approach to diagnose impairments and provide supports such as therapy or equipment. In many countries, each newborn is given a hearing screening, allowing a child’s deafness to be identified early in their life (Kosmidou, et al. 2021). Their family can make inclusive efforts, such as learning sign language, offering hearing aids, and providing opportunities to connect with deaf peers. Likewise, identifying a child who has not met certain milestones can help a doctor diagnose a developmental delay, which allows the child to access therapy and other services. With many medical conditions and disability-related impairments, medicinal or therapy-based early intervention can allow for less pain and increase treatment options (Beelmann, Brambring and Rauh 2013). In cases where there are no treatments or parents prefer not to pursue treatment, early diagnoses provide time to develop a support system and plan for a child’s future. We believe health professionals can offer the most support to disabled children by intentionally framing conversations so as not to promote stigma—such as focusing on the goals instead of the deficit and treating equipment needs such as wheelchairs or respirators like tools that will improve the lives of disabled children. They can simultaneously help families understand a child’s impairment and offer ideas to support that child’s access and inclusion, acknowledging that impairments are part of a disabled child’s self-concept (Donaldson 2017). 380

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Especially because we live in an ableist world, disability-related appointments should be a place where children are an integral part of their community, able to access conversation and information, and supported as they are instead of being considered deviants from the norm. After all, a disabled child is likely to see many specialists and therapists. As children often do with messages they receive from the adults in their world, there is a possibility that they will internalise any ableism that they experience (Hodge and Runswick 2013). We suggest that, to counter this tendency, health professionals can respect the tenets of the social model of disability—that it is society’s reaction to an impairment that creates the disability. They can then remove barriers to access. A deaf child needs accessible forms of communication, not necessarily to be hearing. A child who uses a wheelchair needs a ramp to enter, not necessarily to be able to walk. There can be a balance between teaching a disabled child the way people expect each other to do things and letting them find the way that works best for them. For example, when safe, a parent can allow a child to crawl or roll in public areas if the child prefers. Therapy can be respectful and fun, and a child can work in an empowering way towards more function if that’s what they want. It is time we actively create a space where disabled children can safely and proudly express all aspects of their identities. While some aspects of the medical model are to be challenged, it is also important to remember that many disabled and chronically ill people rely on medicine and are seeking to remedy at least certain aspects of their conditions (Wendell 2013). That which Shakespeare and Watson (2001) highlight is still worthy of discussion: both social barriers and impairments disable people. There is significant value in the political and movement-building importance of the social model in highlighting society’s role in disability and encouraging disabled people to challenge socially implemented barriers. However, disability is not created by society alone—there are impairments that are inherently disabling as well. So what is the right answer for parents and health professionals? How does a parent know when to work towards improving function versus honouring their child as the unique, disabled individual they are? Can they do both simultaneously? While it is vital to ensure that a disabled child feels good about themselves and their disability, is it necessary to forgo therapy and treatment for that to happen? These questions are even more challenging to navigate when most health professionals, let alone families, have not been exposed to any way of viewing impairments outside of something to be fixed. We believe there is a false dichotomy that working on improving one’s function undermines disability pride. Working on gaining function is not necessarily working to overcome or fix disability but can be an earnest effort to improve one’s quality of life, eliminate pain, or access tasks of daily living. In that sense, when considering best practices, health professionals and parents can look to Swain and French’s (2000) affirmative model, which recognises disability as a non-tragic social identity. We believe parents, educators, and health professionals can encourage a child to navigate the world in a manner that feels most comfortable to them—with selfdetermination and knowing the value of their own consent. We can support a child 381

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in identifying and reaching their own goals to the degree possible, give them the right to decline help, and understand that impairments often cause fatigue, which makes tasks more cumbersome. A child might workshop goals with their therapist and therefore feel more empowered when working towards them. Parents might consider inviting their child to attend what are typically thought of as adult meetings to reinforce the child’s power and agency in relation to their disability. This approach would likely increase the possibility that the child knows that their input matters and that the adults are talking about them with the intention of supporting them. The United Nations Convention on the Rights of the Child (1989) states that children have the right to express their views and to be both heard and respected. Article 7 of the Convention on the Rights of Persons with Disabilities (2007) ensures that the rights of non-disabled children apply equally to disabled children.

Small Changes That Yield Big Results In this section we suggest changes health professionals can make to avoid and counter processes that are potentially harmful for disabled children. Health professionals work within a normative and medical model and use a deficit-based approach that, when used on its own, is detrimental to the development of disabled children. However, small shifts in their practice can yield significant changes. We believe that for a disabled child to feel empowered and be treated as a full citizen, it is important that they experience treatment from their healthcare team that reflects their wholeness. Equally important is framing disability in such a manner that allows parents to appreciate their child as they are instead of mourning a fictional non-disabled child they might have imagined. After all, in addition to health professionals, parents generally have significant influence on a child’s self-concept. Precisely because their disability is inherent, it will contribute to a child’s self-concept in a positive, negative, neutral, or mixed way. Campbell (2018) notes a precariousness to the lives of the disabled, much of which is rooted in ambivalence towards them, resulting in their moving within an ableist world in a compromised way. Practical and easy-to-implement changes by health professionals can alter the balance of this movement within our ableist world.

Resources A simple step providers can take is to change the resources and literature given to families. For example, they can provide resources on a child’s impairments or chronic conditions that are framed in a neutral or positive manner, as opposed to a tragic one and depicts disabled children included in day-to-day activities. Claire’s child has a specialist that does this well. At the first appointment, the family was given numerous articles, resources for disabled athletics, camps, and other activities. Since then, information about adaptive sporting events, such as basketball tournaments or surf contests, has been shared with the family. Sharing resources and encouraging exploration of any of their child’s interests allowed the family to feel comfortable that this doctor’s office was likely to interact with their child respectfully and kindly. Years 382

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later, they were not surprised to learn that the doctor, the head nurse, and one of the physician assistants are all closely related to disabled people. We suggest that co-producing resources with Centres for Independent Living or disability rights organisations would likely maximise agency and inclusion. For example, autistic advocates request Autism Speaks literature not be given to parents of children newly diagnosed with autism, because Autism Speaks does not recognise autism as an inherent part of a child but something to be fixed, overcome, or cured (Autistic Self-Advocacy Network 2009). A frequently used phrase within the disability community—‘Nothing about us without us’—is a powerful reminder that people with disabilities should always be active participants when decisions about their community are being made (Charlton 1998). While the healthcare profession is unlikely to change the normative approach to medicine, health professionals can consider its potential downside and share diagnoses with a positive—or at least neutral—attitude towards disability. We propose that creating an awareness of the deficit/norm mode of thinking and introducing other modes could give health professionals more insight into the importance of this issue. For example, health professionals could explain the need for a statistical approach but also acknowledge the challenge of hearing about a child in a way that focuses on what they cannot do compared to their peers. Discussing among the healthcare community the use of the term impairment, differentiating between support and fixing or normalising, and addressing the balance in navigating disability from this perspective may help counter this problem. Health professionals can thus consider adding a pamphlet or even a few sentences that frame disability in a more positive manner when providing statistical data that can feel overwhelming to read. In addition to literature, connecting parents with groups that view the child’s disability through a positive lens can be beneficial. For example, Claire’s family benefited greatly from a programme in the United States for deaf children—the Shared Reading Project. A deaf person came to the family home weekly to teach a different children’s book in American Sign Language (ASL) and share information about deaf culture. The programme allowed Claire’s family to learn ASL while reading to their child. Their deaf mentor also shared what felt isolating to them as a child, which promoted inclusion and helped drive the family’s advocacy when their child was young.

Challenging Norms What role can health professionals have in addressing systemic ableism? Campbell (2018) suggests addressing ableism includes challenging processes and attitudes that negatively impact disabled children, such as notions of productivity, individuality, well-being, and beauty. Health professionals can do this in daily interactions and can challenge normative shadows. In fact, by simply interacting with disabled children in a respectful way that accepts them fully, health professionals reflect to disabled children they are good enough. A health professional can challenge the normative shadow by offering therapy and treatment in a supportive way that guides the child to naturally improve upon their skills while fully accepting their disability as normal. 383

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This can be done simply in the same manner one teaches or coaches a non-disabled child. When young disabled people are involved in decision-making about their treatment, their motivations include desire for greater independence, social participation, greater health, or to have a life free of medicalisation (Mitchell 2014). While these very important decisions are difficult, including a child allows them to be an agent. Additionally, health professionals can provide the opportunity to change how disabled individuals see themselves by shifting how initial diagnosis is presented, which can lead to increased self-esteem. Participating in their daily activities with this changed attitude has the capability to ultimately change how others view disability and create more inclusion. By framing the child as fine exactly as they are, health professionals can make a significant impact, allowing a disabled child to see impairments as normal variations in the human experience. Adults in disabled children’s lives can help them practice being proud of who they are.

Offering Strategies or Resources as Part of a Team The healthcare community also has the potential to set a different tone by offering strategies or resources for a disabled child or their parents to empower themselves. Many parents-to-be receive genetic testing. Ideally, geneticists, when sharing results that indicate a potential disability, do so from, at minimum, a neutral stance. As already mentioned, we have been to medical offices and hospital systems addressing disability in an empowering way. Health professionals who treat our disabled children just as they treat a non-disabled patient, with an acceptance of disability as inherent, have made a powerful impact. Claire’s family has been very lucky in that they have found health professionals who understand that they love their child, including his impairments. The team knows that his parents want to support him in gaining the function that he wants to gain, but never at the cost of his consent or self-esteem. Additionally, the healthcare team centres his voice and priorities and works collaboratively with the family, which has led to a mutual respect and trust that allows for both blunt conversations and creative brainstorming. In our experience, health professionals who genuinely see themselves as part of a team that includes both parents’ and their disabled child’s views are more effective. It is the professionals who are willing to learn about the child, rather than those who want only to know about the ’disability’ who are able to work effectively as partners. (Hodge and Runswick-Cole 2009, p. 654)

Framing Disability Differently Although disabled children may need more medical care, rehabilitation, and therapy than a non-disabled child, they also need to be seen for who they are and have the option to be included in the conversation. Chronically ill and disabled children want to be included in conversations about their health to differing degrees (Mitchell 2014). Instead of reflecting society’s general view of disability through lenses of pity and tragedy, we believe health 384

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professionals can influence significant change by working under the assumption that disabled children have the same likelihood of happiness as non-disabled children. After all, the decision to present disability with a tragic or pitiful lens is more cultural than medical. This results in many health professionals who have not considered another way of seeing disability simply because they have not been exposed to alternatives or had their cultural beliefs challenged. Encouraging health professionals to explore and share alternative models of disability is a simple yet effective way to change how disability is framed.

Addressing Implicit Ableism There is usually a genuine desire within medical systems to make things better for the disabled child and their family. However, society’s pervasive ableism often results in implicit anti-impairment bias that leads health professionals to approach the child in a way that sends a message that something is inherently wrong with them. Health professionals need to become aware of the ableist attitudes embedded within their respective cultures in order to examine them and any biases. While change is difficult, simply being aware ableism exists can allow a doctor to come from a more neutral position when speaking to parents. This awareness, in turn, builds a relationship of trust with a disabled child and their parents, allowing them to more freely explore the treatment options presented to them. One way to address implicit bias is disability equality training, which fosters understanding the social model, implementing societal changes, inclusive actions, and more to increase disability empowerment (Kuno 2012).

Changes in Language When interacting with a disabled child, it is not only the language used but also the framing of the language that makes a significant difference. Talking to a parent in a supportive manner that does not present their child’s disability as tragic is the most important takeaway in initial appointments. If parents are seeing a health professional for the first time after they already know of a child’s disability, take their lead and use the same language they use, unless they are using a completely outdated term, such as ‘handicapped’ or ‘retarded’. In that case, defaulting to people-first language is generally well-received as non-offensive to members of the disability community. Equally important to tone and vocabulary is directly talking to the patient with a disability instead of about them. Our experience as parents was that children, even as young as 4, picked up on the lack of power and agency they possess when medical professionals speak over them instead of to them. Claire’s son, at 4, communicated with her that he did not like appointments with doctors who talked about him, so she asked health professionals to direct their communication at him. At 9 years old, he explains similar feelings: When a doctor or therapist talks to my parents instead of me, I get mad. I don’t like it. It doesn’t feel good to listen to them talk to my parents about me. I don’t really know why, but it feels better when they talk to me during appointments and therapy. 385

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It is possible to include children with cognitive and communication impairments in discussions, and it sets up an expectation of inclusion for disabled children and their families (Stafford 2017). A child should be encouraged to participate as is developmentally appropriate, with questions directed to them. If they are not able to answer, asking them if it is okay for their parents to answer reinforces their status as the primary agent while still allowing a doctor access to information they seek. Above all else, doctors should not assume a child is not listening or not able to comprehend what is being discussed with the parent. This can be devastating to a parent and child and potentially ruin the relationship they have with the medical community. As those with impairments often see medical professionals far more frequently than other people, it is particularly important that a young child and their parents feel comfortable expressing themselves to their medical team.

Increasing Representation Witnessing disabled people who are not conforming to stereotypes is an excellent way to foster a shift in cultural views on disability. Healthcare offices would benefit the disability community by hiring disabled people. Chacala et al. (2014) analysed data regarding disabled occupational therapists and found differences in their values compared with those of their profession—mostly regarding independence, placing higher value on doing things the non-disabled way, and attitudes towards disability. Claire’s child’s first audiologist used hearing aids and had speech impairment due to her deafness. The family liked that he had a doctor with the same impairment as him. When asked, he said, ‘I don’t remember her. But I wish I had a therapist with cerebral palsy, because they would understand me more.’ None of us can fully understand the lived experience of another, but it is easy to imagine that someone with one disability can better understand many of the experiences of another person with the same disability. Speech and language pathologist Donaldson (2017) notes, because of the potential for parental unconscious bias when discussing treatment and assessments, it is also important to consider the input of disability cultural communities, such as the autistic and deaf communities. The therapists in Chacala et al.’s (2014) study also consider their respective disabilities and lived experience to have a positive influence on the work they do. It is important, however, to remember when hiring people from marginalised communities not to expect them to speak for an entire population or ask them to do unpaid work educating others (Chacala et al. 2014). In addition to representation in medical offices, there is a need for more disabled individuals to be in research positions and healthcare teaching positions to the degree that there is a variety of disability perspectives that challenges the status quo (Janz 2019).

Conclusion Being exposed to an alternative way of viewing disability allows the medical community to change its current approach to disabled children and their parents. In the end, a child’s medical team’s framing potentially colours the entire family’s perspective on 386

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an initial diagnosis and potentially provides parents and children a way to view disability that counters prevalent stereotypes. Diagnosing impairments with a positive lens can counter stigma and increase the likelihood that a disabled child is proud of their disability identity. Participating in their daily activities with this changed attitude has the ability to ultimately change how others view disability. We hope that enough health professionals will see the benefit of this approach to advocate to their country’s respective healthcare associations to change the way disability is taught in healthcare education. Ideally, all professionals who work with disabled children will be taught to shift their attitudes from that of ‘fixing’ to that of ‘supporting’. What is being advocated are not huge systemic changes that are difficult to put into effect but a shift in outlook and adjustments to the way that health professionals carry out their work with disabled children within their respective areas of expertise. As Fine and Asch (1988, p. 16) highlight, ‘[o]nce people with disabilities are admitted inside the human and moral community, the task becomes one of creating an environment where all humans—including those with impairments—can truly flourish’. In the end, the hope is that, as a society, we can eventually move from disability acceptance to a push for medical professionals to become allies to the disability community and help foster disability pride and promote inclusion of disabled children in their community.

Interview with Kelly Anderson, Doctor of Physical Therapy What’s your philosophy on working with children with disabilities? Treatment should be fun and the child should have a say. This isn’t only for overall happiness but life-long lessons. Every child is different when it comes to treatment approaches. I meet them where they are to build off skills, looking at each child as a whole. Most importantly, I listen to them—their words and non-verbal language and reactions to activities. Because we are trained to be fact-based, it’s easy to avoid the extraneous factors that impede progress. Considering a child’s emotional health—happiness, trust, and comfort—is often the most important part of success. What general approach towards disability do you see in your field? There are some really great people with a similar approach and philosophy to therapy. Unfortunately, I also see professionals seeming to only see the disability or fight against it instead of working with it as part of the whole child. They become frustrated because the child is not functioning at the same level as their peers. Others might put an expected ‘cap’ on progress. In your practice, do you consider disability pride? Disability shame/stigma? Absolutely! This can be as simple as helping a child/family find language to talk openly about their disability. Sometimes parents aren’t there—they don’t see disability as positive—which seems to impact kids negatively. I talk about disability in a positive light and in calm conversation so a child can feel comfortable talking/learning about their disability.

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References Autistic Self-Advocacy Network. 2009. Letter to the sponsors, donors and supporters of Autism Speaks. Autistic Self-Advocacy Network. 7 October. [Online] [Accessed on 13 February 2021] Available from: https://autisticadvocacy.org/2009/10/letter-to-thesponsors-donors-and-supporters-of-autism-speaks/ Beelmann, Brambring, M. and Rauh, H. 2013. Early childhood intervention: Theory, evaluation, and practice. Berlin: Walter de Gruyter. Black, E. 2012. War against the weak: Eugenics and America’s campaign to create a master race. Washington, DC: Dialog Press. Black, R. S. and Pretes, L. 2007. Victims and victors: Representation of physical disability on the silver screen. Research and Practice for Persons with Severe Disabilities 32(1), pp. 66–83. Brueggemann, B. J. 2013. Disability studies/disability culture. In M. L. Wehmeyer (ed.), Oxford handbook of positive psychology and disability. New York: Oxford University Press. pp. 279–299. Campbell, F. K. 2001. Inciting legal fictions: Disability’s date with ontology and the ableist body of the law. Griffith Law Review 10, pp. 42–62. Campbell, F. K. 2018. Precision ableism: A studies in ableism approach to developing histories of disability and abledment. Rethinking History 23(2), pp. 138–156. Chacala, A., Mccormack, C., Collins, B. and Beagan, B. L. 2014. My view that disability is okay sometimes clashes: Experiences of two disabled occupational therapists. Scandinavian Journal of Occupational Therapy 21(2), pp. 107–115. Charlton, J. I. 1998. Nothing about us without us: Disability oppression and empowerment. Berkley/ LosAngeles/London: University of California Press. Cohn, F. 2011. Suddenly ‘I’ was a ‘them’. Current Problems in Pediatric and Adolescent Health Care 41(4), pp. 111–112. Convention on the Rights of Persons with Disabilities. 2007. [Online] 2515 UNTS 3, opened for signature 30 March 2007, entered into force 3 May 2008. [Accessed on 25 April 2022] Available from: https://treaties.un.org/doc/publication/UNTS/Volume%202515/v2515.pdf Convention on the Rights of the Child. 1989. [Online] 1577 UNTS 3, opened for signature 20 November. [Accessed on 11 November 2021] Available from: www.unicef.org/ child-rights-convention Deegan, P. 2005. Silence: What we don’t talk about in rehabilitation. [Online] [Accessed on 21 January 2021] Available from: www.patdeegan.com/pat-deegan/lectures/silence Donaldson, A. L., Chabon, S., Lee-Wilkerson D. and Kapantzoglou, M. 2017. Mirror, mirror on the wall: Reflections on speech-language pathologists’ image as advocates, activists, and aides. Psychology in the Schools 54(10), pp. 1285–1293. Du Mont, J. and Forte, T. 2016. Perceived discrimination and self-rated health in Canada: An exploratory study. BMC Public Health 16, pp. 742–52. Dunn, D. and Andrews, E. E. 2015. Person-first and identity-first language: Developing psychologists’ cultural competence using disability language. The American Psychologist 70(3), pp. 255–264. Fine, M. and Asch, A. 1988. Disability beyond stigma: Social interaction, discrimination, and activism. Journal of Social Issues 44(1), pp. 3–21. Fitzgerald, C. and Hurst, S. 2017. Implicit bias in healthcare professionals: A systematic review. BMC Medical Ethics 18(1). Graungaard, A. H. and Skov, L. 2007. Why do we need a diagnosis? A qualitative study of parents experiences, coping and needs, when the newborn child is severely disabled. Child: Care, Health & Development 33(3), pp. 296–307. Hodge, N. 2006. Disabling families: How parents experience the process of diagnosing autism spectrum disorders (EdD. Dissertation), Sheffield, Sheffield Hallam University. Hodge, N. and Runswick-Cole, K. 2009. Problematising parent-professional partnerships in education. Disability & Society 23(6), pp. 637–649.

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Framing Does Matter Hodge, N. and Runswick-Cole, K. 2013. ‘They never pass me the ball’: exposing ableism through the leisure experiences of disabled children, young people and their families. Children’s Geographies 11(3), pp. 311–325. Janvier, A. 2011. Pepperoni pizza and sex. Current Problems in Pediatric and Adolescent Care 41(4), pp. 106–108. Janz, H. L. 2019. Ableism: The undiagnosed malady afflicting medicine. Canadian Medical Association Journal 191(17). pp. 478–479 Kapp, S. K., Gillespie-Lynch, K., Sherman, L. E. and Hutman, T. 2012. Deficit, difference, or both? autism and neurodiversity. Developmental Psychology 49(1), pp. 59–71. Kosmidou, P., Tzifas, S, Lygeros, S., Danielides, G., Nikolopoulos, T., Dimitriou, G. Angelis, S., Naxakis, S. 2021. Newborn hearing screening: analysing the effectiveness of early detection of neonatal hearing loss in a hospital in Greece. Cureus 13(11). p. 19807. Kothari, S. and Kirschner, K. L. 2006. Abandoning the golden rule: The problem with ‘putting ourselves in the patient’s place’. Topics in Stroke Rehabilitation 13(4), pp. 68–73. Kuno, K. 2012. Doing disability equality training. [Online] Selangor: MPH Group Publishing Sdn Bhd. [Accessed on 18 September 2021] Available from: www.un.org/disabilities/ documents/egms/2015/Kenji_Kuno_DET.pdf Longmore, P. K. 2003. Why i burned my book and other essays on disability. Philadelphia: Temple University Press. Lowit, D. and Averill, M. B. 2014. Fathers reflect on their experiences of the receipt of a postnatal diagnosis of Down Syndrome or trisomy 21. Journal of Prenatal & Perinatal Psychology & Health 28(3), pp. 174–197. McRuer, R. 2006. Compulsory able-bodiedness and queer disabled existence. In L. J. Davis (ed.), The disability studies reader. 2nd edition. New York: Routledge, pp. 301–308. Mitchell, D. T. and Snyder, S. L. 2000. Narrative prothesis: Disability and the dependencies of discourse. Ann Arbor: University of Michigan Press. Mitchell, W. A. 2014. Making choices about medical interventions: The experience of disabled young people with degenerative conditions. Health Expectations: An International Journal of Public Participation in Health Care and Health Policy 17(2), pp. 254–266. Morrow, A. M., Hayen, A., Quine, S., Scheinberg, A. and Craig, J. C. 2012. A comparison of doctors’, parents’ and children’s reports of health states and health-related quality of life in children with chronic conditions. Child Care, Health & Development 38(2), pp. 186–195. Oliver, M. 1990. The politics of disablement. London: Macmillan. Overboe, J. 2004. Articulating a sociology of desire exceeding normative shadows (PhD Thesis), British Columbia, University of British Columbia Radermacher, H., Sonn, C., Keys, C. and Duckett, P. 2010. Disability and participation: It’s about us but still without us. Journal of Community & Applied Social Psychology 20(5), pp. 333–346. Rydell, R. 2012. Eugenics in early 20th century America. C-Span. [Online] [Accessed on 21 January 2017] Available from: www.c-spanvideo.org/program/310565-1 Sapon-Shevin, M. 2007. Widening the circle: The power of inclusive classrooms. Boston: Beacon Press. Shakespeare, T. 2006. The social model of disability In L. J. Davis (ed.), The Disability Studies Reader. Abingdon: Taylor & Francis, pp. 197–204. Shakespeare, T. and Watson, N. 2001. The social model of disability: An outdated ideology? In S. Barnett and B. Altman (eds.), Exploring theories and expanding methodologies: Where we are and where we need to go. Bingley: Emerald Group Publishing, pp. 9–28. Smith, B. and Bundon, A. 2018. Disability models: Explaining and understanding disability sport in different ways. In I. Brittain and A. Beacom (eds.), The Palgrave handbook of paralympic studies. London: Palgrave Macmillan. pp. 15–34. Stafford. 2017. ‘What about my voice’: emancipating the voices of children with disabilities through participant-centred methods. Children’s Geographies 15(5), pp. 600–613. Swain, J. and French, S. 2000. Towards an affirmation model of disability. Disability and Society 15(4), pp. 569–582.

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Claire Reinhardt and Amy Robasse Thomas, C. 2010. Medical sociology and disability theory. In G. Scrambler (ed.), New directions in the sociology of chronic and disabling conditions. New York: Palgrave Macmillan, pp. 37–56. Van Puymbrouck, L., Friedman, C. and Feldner, H. 2020. Explicit and implicit disability attitudes of healthcare providers. Rehabilitation Psychology 65(2), pp. 101–112. Wendell, S. 2013. Unhealthy disabled: Treating chronic illnesses as disabilities. Hypatia 16(4), pp. 17–33.

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22 FROM ‘RETARDED’ EDUCATION TO AUTHENTIC LIFE A Personal Education Retrospective Tammy Bachrach and Timothy Woods Tim: My name is Tim Woods. I am 53 years old and live in the United States. I work as a custodian at two churches in my city. I have always worked and hate being at home and bored. When I was young, they didn’t think I could learn at all. The experts and teachers turned out to be wrong about a lot of things. My sister and I will tell our story. Not many of our lives are dictated by numbers like Tim’s early life was. The first significant number was 17. Apparently, this number represented a number that, in terms of head circumference, provided Tim with his first label at age 9 months: microcephaly. Tammy: I am Tim’s sister and was only 3 years old when he was diagnosed, but according to our aunt, with this single measurement, the doctor confidently predicted that Tim would never walk, talk, or learn. Our parents were told Tim would acquire only animal instinct. He would not operate out of a rational brain, as is the common distinction between animals and humans. Luckily, it was difficult for my parents to reconcile this less-thanhuman diagnosis with the 8-month-old baby in their arms. To be honest, our parents were predisposed to be wary of professionals since they had also both been labelled as intellectually impaired.

How We Wrote This Chapter Tim and I hold shared and distinct memories of our childhood and educational journeys. We have used these memories, as well as photographs and historical documents, to reflect retrospectively on Tim’s educational journey, which began in 1970, before US DOI: 10.4324/9781003056737-30

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federal law PL 92–142 passed in 1975. This law granted all children with disabilities the right to attend public school for the first time in our nation’s history (Triano 2000). At that time, only one in five children with disabilities was educated in American public schools (Zigmond 2015). In 1975, when Tim was 8 years old, PL 92–142, first titled the Education for All Handicapped Children’s Act, passed into law. After several reauthorisations, it is now called the Individuals Disabilities Education Act (IDEA, n.d). This collaborative autoethnography explores our lived experiences as children of parents with intellectual impairments growing up in the United States in the 1970s, during the early days of educational reform for children with disabilities. Tim gives a first-hand account of his educational experiences, and we discuss how this historic law impacted Tim’s education and, ultimately, the trajectory of his life. Tim’s reflections are written in italics. As the only family member without a disability, Tammy serves as a participant-researcher. Her distinct memories are also written in italics. As a professor of special education and disability scholar, Tammy also serves as the historical narrator and reflects on both the benefit and limitations of IDEA and current special education practices which continue to rely on a deficit model of disability (Harry and Klinger 2007; Trainor 2010), largely practice integration and mainstreaming under the guise of inclusive practices (Danforth and Jones 2015), and continue to marginalise the voices of people with disabilities (Pazey 2020). Collaborative autoethnography was selected as the methodology for this chapter since it allows the researchers’ stories to be intrinsic to the study and to both describe and systematically analyse personal experiences (Ellis, Adams and Bochner 2011). Traditional research regarding special education has ‘marginalized disabled people by producing knowledge on them and not for them’ (Meitola, Miettinen and Vehmas 2017, p. 263, authors’ emphasis). Little research has privileged the voices of those with intellectual disabilities (Pazey 2020). Autoethnography moves beyond autobiographical works by examining the researchers’ experiences and analysing these experiences within cultural practices— in this case, the education of children with disabilities within the United States. Our family story of disability and education spans the years between 1942 and 1988. The terms used to describe children with disabilities in the United States have shifted during this time. We have purposely selected to use the terms that were historically used to describe Tim and others with intellectual disabilities and adjust the language as it changed historically.

Columbia School As a result of Tim’s diagnosis, in 1972, at age 5, he began attending Columbia School, one of the few available schools for children with ‘severe mental retardation’. Tim: I don’t remember Columbia School. Tammy: In my shadowy memory, it is grey, but I can’t really recall visiting there. I don’t think they had back-to-school night or invite families in to showcase the school and the work that students accomplish there. 392

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Neither Tim nor I really remember the school, which is surprising, because Tim attended there between 1972 and 1978, until he was 10 years old. I was 14 years old when Tim was finally allowed to leave Columbia and begin ‘real’ school. To us, Columbia was a ‘special’ place, but not in a good way. It was a school for ‘special’ children, for ‘other’ children. To me, Columbia was the school Tim attended when he had very little language and, driven by immense frustration, bit deeply into the thick flesh of his hand. These scars still serve as a reminder of this time. As Tim’s sister, I could interpret for him, telling others what he was trying to say, hopefully staving off this self-abusive release of anger. I never sensed that Tim enjoyed his ‘treatment’ at Columbia School. At that time, he had a voice, but one that remained a behavioural, non-verbal voice. Columbia School began in 1959 ‘to house severely mentally retarded children form the Southwest Cooperative program district’ (Torrance Herald 1959) and served seven school districts in our Southern California community. The school served those who were considered ‘trainable’ and ‘unable to benefit from ordinary classroom education’ (Torrance Herald 1964). Classes at Columbia were designed to develop finger dexterity, to differentiate colours so they would sort plastic hoses or assorted screws and bolts. Principal Foster was hopeful that ‘[i]f they can develop the coordination and finger dexterity, they may be able to look forward to a future in a sheltered workshop’ (Torrance Herald 1964). Columbia School was considered progressive and representative of special education during the 1960s and 1970s. It focused on practical daily life skills, such as cooking and cleaning (Bateman, Lloyd and Tankersley 2015). The local newspaper reported that, until the development of Columbia’s prevocational classes and sheltered workshops, where adults continued to sort small items for business, ‘graduating from Columbia meant obscurity’ or ‘vegetating at home or being institutionalized’ (Torrance Herald 1964, p. 33). Old newspaper stories represent Columbia as a benevolent place which was willing to serve the most broken of children. The principal of the school received the Golden Apple Award as a recognition of this benevolence by the city’s school board (Press Herald 1968). Danforth and Jones (2015), in their critique of special education practices, call this representation the conventional narrative of special education, one of benevolence and remarkable charity. In contrast to institutionalisation, the education offered at Columbia School could be considered a step in the right direction, albeit one still built on a charity model that continued to maintain the low expectations for the students they served. Spurred by the US civil rights movement of the 1950s and 1960s and the Brown v. Board of Education ruling of 1954, which ruled that separate education based on race was not an equal education, parents of children with disabilities began to argue against educational discrimination (Zigmond 2015). Federal law PL 92–142 guaranteed children with disabilities a free and appropriate public education in the least restrictive environment determined by assessment and the individualised education plan (LaNear and Frattura 2007). The law also provided parents with due process rights and an active role in planning the students’ educational plan. Despite these provisions, our parents had little power over the education of either 393

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of us. Like Tim’s, their voices were muted. My parents each had struggled with their own intellectual disabilities. While they recognised the advantages that an education could hold for some, including their daughter, they also had first-hand experience in how educational institutions would abandon those with intellectual impairments. Our father attended schools in rural Washington during the 1940s and 1950s. No provisions were made for children who struggled to read, and the only solution offered was to repeat grades. When Dad was in fifth grade and still could not read, they sent him back to third grade. Then, at age 15 and in the eighth grade, when they proposed to have him return to fifth grade, he refused to return to school and went to work on a neighbour’s farm. As a young child, our mother attended the special class for mentally retarded children. According to our mother’s report, she spent her days colouring and playing with the other children in the class, and she was never taught to read. When her mother died, she was forced to move to another state to attend high school, which did not offer any special education or remediation. Our mother remembers with sadness being called ‘dummy’ and being bullied by other students and even some teachers. She found refuge working in the cafeteria with the older kitchen workers, until eventually she also dropped out of school. Fortunately for Tim and me, once out of school, our parents were not as easily identified as ‘disabled’, being more successful as employees than as students. They had avoided the most common treatment in America during the 1940s and 1950s: institutionalisation. As a result, our mother also avoided the forced sterilisation that prevented more than 65,000 women with mental retardation from having children (National Council on Disability 2012). However, shortly after Tim’s birth, our mother was hospitalised for several months, and Tim and I temporarily moved in with our aunt. It was during this time that our parents lost their parental rights, merely because of their intellectual disabilities. Without our parents ever being accused of harming their children and never appearing before a court, an out-of-state court granted guardianship of Tim and me to my non-disabled aunt whom we had just met. Our story reflects the most common response to parents with intellectual disabilities. According to Booth and Booth (1994) and McConnell and Llewellyn (2002), between 40% and 60% of parents with intellectual disability lose custody of their children. While our parents were bitter about losing control of their family, they have expressed retrospectively that my aunt Margie was able to give us opportunities they could not have. Discontented with the public school systems, Margie paid for me to attend private Christian schools. This was not an option for Tim, since faith-based schools did not (and most still do not) accept students with intellectual disabilities (Boyle and Bernards n.d.; Marshall 2020). Tim: I was not allowed to go to school with Tammy. I don’t think it is right for Christian schools to not let us come . . . because they don’t want disabled people. 394

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Advocacy Beyond financial means, Margie had the education and social capital to be a fierce advocate for Tim. While the early law provided access to a free and appropriate education, where a child was educated and what they were expected to learn relied heavily on categorical placements. The placement was frequently determined by IQ scores and the child’s perceived ability (Triano 2000). While a publicly funded education was guaranteed by 1975, Columbia School was still the only option for Tim until 1977 due to the perception that he was not educable. Ironically, when Tim began attending Columbia at age 5, he scored a 63 on the Stanford–Binet IQ test. According to the DSM’s criteria, this categorised Tim as ‘educable mentally retarded’. After three years of ‘school’, utilising the same assessment instrument, his IQ was 54, changing his diagnosis to ‘trainable mentally retarded’. By 1977, after five years of ‘education’, Tim’s IQ was assessed to be ‘40+?’ The private psychologist who conducted Tim’s psychological evaluation at that time acknowledged his gradual intellectual decline, while noting Tim’s strong adaptive skills, such as his ability to ride a skateboard with the neighbourhood children, to take care of his basic self-help skills, and to help around the house. The psychologist concluded: Timmy has shown a gradual decline, in terms of intellectual development, which appears to be related to his not being adequately stimulated, both at home, and possibly at school. His adaptive behavior skills are more indicative of what his intellectual capacity may be. (Share 1977, our emphasis) His conclusion more assertively calls into question the abilities of our mother, who he notes in his report is ‘limited in her intellectual capacity, to provide a stimulating environment’, despite the fact that Tim’s strengths lay in the skills he exhibited at home. Hedging his statement with ‘possibly’ demonstrates a hesitancy to attribute the decline to his educational environment. When the law had finally secured other educational options, Tim’s ‘declining IQ scores’ put him in the category of mental retardation that disqualified him from the newly formed, more—integrated public-school options. Columbia School proved to be a place that Tim could not leave easily. In 1969, California Regional Centers were established to help families receive critical services they needed in the community. When he was aged 10, the speech therapist at Columbia stated that Tim ‘had progressed as far as he would be able’ and would no longer receive speech therapy. Through the advocacy of my aunt, she was able to secure a tutor and private speech therapy funded by the Regional Center in order to supplement his education, with the goal of increasing his abilities so he could leave Columbia School. Tim: I remember that I had a tutor who came to my aunt’s house. I don’t remember her name. I don’t remember why Aunt Margie sent a tutor to 395

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our house. Maybe my brain wasn’t awake yet. I had to work on it to get out of Columbia. I can learn now since I went to South High and not Columbia. I don’t remember biting my hand when I was little, but others say I did it because I couldn’t talk. I had a speech therapist. I talked to him about some things. Aunt Margie told me, ‘Go there and talk with him.’ One-on-one tutoring proved to be very beneficial to Tim. Within six months, his academic abilities had increased by two years. Regional Center services, however, are vulnerable to state funding, and during 1979, all services, with the exception of emergency services, were defunded. Tenacious to make up for lost time, our aunt filed for fair hearing to appeal this freeze of services. These legal records provided us with a verbatim record of her thoughts and feelings about Tim’s educational opportunities in 1979. Despite her lack of formal training in special education, my aunt articulated a major rationale for the integration movement: Tim tends to mimic, copy, however you want to put it, the children he’s with. If he is with ‘not normal children’ he tends to copy what their habits are. When he is with normal children, he tends to rise above the situation and pick up the better habits . . . he progresses. (Maxwell v. Harbor Regional Center 1979) Our aunt died nearly 12 years ago, but as I read her statements, I can hear her voice, her urgency. This urgency frequently gets parents labelled as ‘difficult’ and establishes an adversarial relationship between the family and educational decision-makers (Wang et al. 2004). I think what I’m pleading for is . . . I’m pleading for Timmy’s whole future. At the age of 12, . . . the school system has cost him five years. He was capable of learning. He has regressed. He has not gone ahead. He has dropped behind in the school system he has been in. Because he was not adequately stimulated, now he is proving in the last 7 months that, with that stimulation, that we can start to try to catch those five years up. These children in intermediate (grades) are still taking naps at school. I’m not interested in Timmy learning to wash teacher’s cars. I’m not interested in Timmy learning to package little forks and things for the airlines. I am interested in him learning academics. (Maxwell v. Harbor Regional Center 1979) Margie articulated the guilt and stress the effects intense advocacy efforts can have on the family system and mirrors the parent perspectives found by Wang et al. (2004): I don’t have . . . I just don’t have the energy to keep on fighting like this. If he knew the heartache that I’ve gone through, realizing that maybe I’ve been partly to blame for those five lost years because I didn’t know . . . I 396

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just didn’t know because Columbia was telling me he couldn’t learn . . . I’d rather that Tim didn’t hear some of this. I brought him because I wanted you to see what my boy looks like. I wanted you to know him. I want you to know he’s loved. (Maxwell v. Harbor Regional Center 1979)

Regular School By 1979, Tim finally tested in the ‘educable’ range again. This time, the assessor was more critical of his current educational placement, noting that ‘[h]e also apparently has not been exposed to how many things make a dozen, the months of the year, etc. . . . but when numerous trials to criterion were given, he was then able to pick up on the correct response’ (Share 1979). This time, the conclusion was that: Expectancy apparently is too low in his current TMR [trainable mentally retarded] program. His erratic test scatter reflects, in part, his educational retardation. He is an eager learner . . . An EMR [educable mentally retarded] type program or private schooling should be explored. The report also states that ‘the parent has been “intimidated by ‘advice’ from the TMR class that if (the) child was put into an EMR program, he would soon return with many emotional problems” ’ (Share 1979). For the first time, the eye of blame for Tim’s educational difficulty shifted from Tim and his family to the educational system as a source of his increased retardation. With the support and the advice of these more-progressive experts, my aunt took Tim out of Columbia School and enrolled him in our neighbourhood middle school. Tim attended a special education class on a typical middle school campus, which meant he and his classmates were educated with other students with disabilities but participated in lunch and break periods with non-disabled students for the first time. Many parents of children with disabilities worry that they will be teased or bullied by those who do see their children as different (Guralnick 1994; Llewelyn 2000). Our family had the same worries, and they were not unfounded. One of my memories of this period serves as an illustration: Tammy: Tim and I sat in the family room after school. Tim sat on the floor, playing with a toy as I read a novel in the recliner. Without much prelude, Tim asked me, ‘What does retard mean?’ My mind scrambled to think of the appropriate factual answer to his question, but also, I wanted to understand why he was asking this question. ‘Where did you hear that?’ I asked. ‘Some kids at school called me and my friend that,’ Tim answered. Most people would have categorized me as a shy child, but uncharacteristically, I never hesitated to confront and threaten kids in our neighbourhood who teased Tim. I was instantly angered. It is the intensity of these 397

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emotions that sears this memory so clearly in my brain even after 40 years. I hesitated but felt I had to answer his question. I fell back on my mother’s description of herself as a slow learner and answered, ‘It just means that it takes you a while to learn new things, but people should not be calling you names.’

Mainstreaming As a teacher, I have heard parents express concerns regarding mainstreaming and their worry that their child will be teased. The reality of this possibility is undeniable, but what is the alternative? Tim was not teased at Columbia because he was hidden, safe, and invisible. To never be teased meant to live only in a separate, disabled world. That world could no longer be good enough for Tim. If he was to live, work, and belong in his community, a world not defined by disability, he would have to learn to navigate people who did not understand disability, to befriend and educate them. He would have to learn about discrimination. In 1982, when Tim was 15 years old, he began attending South High School. He continued to attend separate special education classes, but the instructors looked for ways to mainstream Tim in non-academic classes and to begin Tim’s vocational education. According to Rogers (1993, p. 2), mainstreaming is ‘the selective placement of special education students in one or more “regular: education classes and was typically available to those students who had “earned” the opportunity and who were thought to be able to “keep up” ’. Tim was mainstreamed into a woodshop class and reflected on this experience: Tim: Most of my day was spent with my friends from the special education class. I didn’t have any regular classes, just special classes. Actually, I do remember going to one regular class, woodshop class. I made a chair for a plant. I think mom still has it. I made a little keychain. They got me into woodshop, and I was the only student from my class who went to woodshop. They sent me on my own. I didn’t really feel nervous about going into that new class, and the teacher helped me out a little bit. There were a lot of students in the class. It was a lot bigger than my special education classes. I didn’t really know the kids in the class. One time, there was a substitute teacher in woodshop class. I remember he didn’t do anything, and everyone just had to read. The teacher wasn’t looking, and they (other students) were throwing airplanes and I got the blame for it. When the substitute got mad, the other students told him that I did it. I didn’t do it, but I got the blame for it, and the teacher told me to go. To go to the principal’s office. I had to follow directions and go to the principal’s office even though I wasn’t the one who did it. I tried to tell them, but they didn’t listen. My teacher was called to the principal’s office. She came in, and I had to do sentences. I told them that I wasn’t the one who was throwing the airplanes, but they didn’t believe me. I was the only 398

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one who got in trouble. I didn’t even have any paper. That was my last day. I didn’t go back to woodshop class after that. It’s a funny story now, because I didn’t have to go to school, but it wasn’t funny then. Tim’s story demonstrates several experiences that are common to the experiences of other students with disabilities (Lundy 2007; Pazey 2020). Tim’s voice was silenced. His account of the events of the day was discredited, and he was assumed to be unreliable due to his disability. His experience also reflected the precarious status that mainstreamed students held within the general education classroom. Tim’s default placement was in the segregated special education classroom, and any crossing into general education territory had to be negotiated with the IEP team and the administrators. These endeavours were highly contingent on the willingness of the general education teacher to give it a try (Barton 1992). If it was determined that he could not fit in, he could simply be asked not to return to the general education classroom. In this particular instance, Tim was a guest in the room who was asked not to return. Many special education reformers would argue that the tentative nature of mainstreaming efforts did not go far enough to secure true membership of and belonging to the classroom (Winzer 2000).

Social Life While Tim did not return to any other general education classes during his high school education, the school did foster efforts towards the inclusion of students with disabilities into the social activities of the school. He attended school assemblies and football games but generally met up with friends from his special education class. Tim: I would have lunch together with my friends from that class in the cafeteria because I would get a ticket for lunch. We could sit where we wanted, but I usually sat with my friends. I didn’t have any friends who didn’t have disabilities. I had a girlfriend. She was in my class and I liked her, but we didn’t really do anything together because I had to work. I went to the prom in high school. That was my first dance, and I went with Debbie. This was the regular prom, not a special ed prom. It was held on the Queen Mary ship. I had a good time . . . talking to my friends, and I was dancing with Debbie. I sat with my friends, and I remember that the food was good. The dancing was good. I want to go back again. I still like to dance and go dancing at the community centre on Friday nights.

Vocational Training In the United States, under IDEA, students with disabilities who do not graduate with a traditional diploma receive an extended period of two to three years of education, called transition services, in order to assist them to acquire additional vocational and life skills instruction. The bulk of Tim’s last years within public education 399

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revolved around vocational training. It is these vocational experiences that Tim is most proud of. Tim: I remember that I was the janitor at South High School. I enjoyed my work. I liked my work, and yeah, I did, and I still miss it. I got it when I was maybe 16 or 17. I used to work with Sam Pedro. He was a good boss, and he liked my work. This was my first job. I was the only one who did cleaning of the classrooms, different classrooms. I emptied out the trash, swept, and mopped everything. I still miss it. I didn’t really work with Sam, because he was the boss, and he would tell me what to do. To do this . . . to do different rooms. Ron showed me what to do. Ron was another one of the janitors, and he showed me how to do things. I stayed with him until I got used to the job, and then I went out on my own. He would do one room, and I would do the other room. I worked after school from 3 to 7 PM, Monday through Friday. I liked getting paid.

After Public School During the last of the 1980s, Tim’s and my education paralleled in some ways, and we each benefited from this parallel. I had graduated from a small faith-based college with a BA and general education teaching credential, and I was working towards my special education teaching credential at a California State University. The concept of disability was formalised and academic in a way that my lived experience with disability never had been. It felt like reading about your family through the eyes of a sociologist examining and critiquing a foreign culture. Much of the medicalised knowledge about mental retardation did not fit with my experiences. It was also at the time of the height of the disability rights movement, normalisation, and inclusion efforts. It seemed odd to me that one would have to even state that people with disabilities should live typical, integrated lives. My family did, and we were only impeded by the actions of others. As Tim completed high school, I reflected on how much I had grown into an adult while living away from home at college and wanted this experience for Tim. By this time, Tim was living in a group home with five other young men, but I wanted him to experience the social life of college. There were no programmes for students with intellectual disabilities in colleges at this time, but bolstered by my newfound sense of justice for people with disabilities, I approached my Christian college alma mater and convinced them to let Tim live in the college dorms during the summer term, in exchange for his janitorial services. For the first time, there were no ‘special’ supports or programme. He lived, worked, and socialised with the other nondisabled students on campus. While this opportunity was short-lived, it proved to be a turning point in Tim’s life. He refused to return to the group home or to any form of segregated life. He had a vision for his future that included a regular job, an apartment, a wife, and a typical community life. 400

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Continued Segregation Within my parents’ and our generations, we have seen a shift from the full segregation of institutional life, forced sterilisation, no education, ‘sink or swim’ education, charitable but precarious, integrated education to the demand for equal, inclusive educational opportunities for all children. IDEA has provided the legal mandate to move in a positive direction, but it has still fallen short of eliminating discriminatory practices and segregation. In order to receive special education services in the United States, the student must be ‘branded with a medical label’ which is often stigmatising and ‘antithetical to the philosophy and goals of the disability civil rights movement’ (Triano 2000, para. 21). By focusing on the student’s medical label, the student is left responsible for their difficulties at school, the educational system is excused from meeting the needs of a diverse student population, and expectations remain low. While the IDEA law did not intend that services and supports be provided to children based on categorical labels, it has been acknowledged that, in practice, labelling has resulted in categorical programmes and placement decisions (Triano 2000). Special education continues to be largely segregated education for many students. Critics of IDEA and the current special educational system assert that separate educational systems and the mandate for a continuum of placements maintain and provide legitimacy for restrictive environments, separating students based on disability categories (Taylor 2004). Taylor (2004, p. 220) defines the continuum as ‘an ordered sequence of placements that vary according to degree of restriction’. Tim’s early education and the struggle to move him from a segregated setting to a regular school demonstrate the assertions of other researchers that, once placement has been determined, it is typically maintained, potentially trapping children at a particular location on the continuum of care (Barton 1992; Jindai-Snape et al. 2005; Taylor 2004). Having a variety of separate placement options inadvertently ties supports and services to a separat, physical setting, allowing general education classroom to largely remain as they have been (National Council on Disability 2018). It has been 30 years since those first heated debates about whether children with disabilities should be educated in specialised or inclusive classrooms, and this continues to be a ‘hot button issue’ in the United States (Lloyd et al. 2015 p. 446). However, we now have research that demonstrates that when students, including those with extensive support needs, have access to the general curriculum and effective instruction, they achieve better academic and behavioural outcomes (Cosier, Causton-Theoharis and Theoharis 2013; National Council on Disability 2012, 2018; McGregor and Vogelsberg 1998). Multiple studies have also found that students without disabilities have increased positive outcomes from inclusive instructional environments, including a reduced fear of human differences, improvements in self-concept, and greater empathy (Downing and Peckham-Hardin 2007; Hehir et al. 2016; Nation Council on Disability 2018). Hehir et al. (2016) also found that inclusive education had a positive or neutral effect on the academic, social, and personal development of students without disabilities. 401

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Despite this compelling research, the majority of students with intellectual disability are still not afforded an inclusive education in the United States (National Council on Disability 2018). While IDEA articulates the principle of the leastrestrictive environment (LRE), with access to general education as the first consideration, it falls short of providing clear guidelines for implementing this preference, leaving states and districts to interpret the LRE principle in a variety of ways (Cosier et al. 2019). To illustrate, in California, where Tim and I reside, only approximately 6% of students with intellectual disabilities spend the majority of their day in inclusive general education classrooms, while the majority of students with intellectual disabilities (64%) in Iowa spend the majority of their day in regular classes (US Department of Education 2017). Cosier et al. (2019) demonstrated that, in California, significant variability exists even between neighbouring school districts. In districts serving a higher percentage of Black students, opportunities for inclusion decrease. This high rate of variability between states and districts suggests that placement decisions are not based on the students’ unique needs but on special education practices and district policies (Kurth, Morningstar and Kozleski 2014). A 2018 report by the National Council on Disabilities sums it up this way: The opportunity for students to participate in their neighborhood school alongside their peers without disabilities is influenced more by the zip code in which they live, their race, and disability label, than by meeting the federal law defining how student placements should be made. (p. 9)

Burden on Families Parents have played an important role in securing the educational rights of children with disabilities in American public schools (Trainor 2010). According to Turnbull (2000), IDEA gave parents particular rights and designed parental involvement in the students’ educational planning as an accountability measure, anticipating that public schools could not be relied upon to implement the law with fidelity. Parental advocacy therefore becomes a necessary, albeit burdensome, part of our special education system. Our aunt’s experience remains consistent with the accounts of many parents of children with disabilities. Parents feel conflicting pressure to heed the advice of the educational experts, but also to self-educate themselves and advocate for their children (Stoner et al. 2005; Wang et al.,2004). Parents frequently report difficulty in obtaining services they viewed as adequate and necessary to meet their children’s needs (Stoner 2005; Trainor 2010). When parents must strive to fulfil their advocacy responsibilities, they feel forced into adversarial and stressful roles, potentially impacting their quality of life (Wang et al. 2004). This stress is evident in my aunt’s fair hearing account, as noted earlier. Additionally, some families are disadvantaged in this advocacy role. Trainor (2010) found that parents’ 402

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acquisition and use of capital resources (social, cultural, and economical) surfaced as an important factor in their advocacy efforts. Our parents acknowledged their lack of resources, requiring them to rely on another family member to take up this role.

From Special Education to Inclusive Education Some special education researchers worry that special education is being devalued in favour of general education, therefore jeopardizing the law’s vision of specially designed instruction (Zigmond 2015). This position supposes, however, a limited choice between ‘one size fits all’ education or specialised instruction. What if we reject the limitation of those choices and reform general education to embrace inclusive and specialised education for all students? Can we envision an educational system that tailors education to the needs of all children? Current educational reform in the United States focuses on ‘the ongoing struggle to assure that each student in the school is afforded the opportunity for real learning under the guidance of an effective teacher’ (Puguch, Blanton and Correa 2011, p. 184). A paradigm shift towards student-centred practices, such as universal design for learning and inclusive education, broadens the opportunities for diverse students, including those with disabilities (Capp 2017; Winzer 2000). We have yet to realise the vision outlined by Article 24 of the United Nations Convention on the Rights of People with Disabilities (2006) (CRPD), which includes the right for children with disabilities to • • •

access an inclusive, quality, and free primary education and secondary education on an equal basis with others in the communities in which they live; receive the support required, within the general education system, to facilitate their effective education; and have effective individualised support measures provided in environments that maximise academic and social development, consistent with the goal of full inclusion.

If we are to consider the rights of children—all children—including those learners with disabilities, we must continue to reform efforts to shift our thinking away from blaming the children and their parents for their difficulties and poor outcomes and turn our attention to educational pedagogy and practices that seek to know, listen, and value the experiences and voices of all children. Article 7 of the CRPD asserts the right for children with disabilities to use their voice: Ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right. 403

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As Tim reflected on his education experience and what message he would provide to educators, he resisted limitations and elevated student voices: Tim: People with disabilities should be in regular class but get the help or tutoring that they need. They should have a regular life with support, get a job, and make their own decisions. It should be up to the person to decide what they want in life and to be listened to. I was lucky and eventually got an education and the support I needed even after school. I have always been employed, married (and divorced), lived on my own, and controlled my own life. This is what I want for others.

Individuals with Disabilities Education Act (IDEA)— https://sites.ed.gov/idea/: IDEA is the US law that guarantees a free and appropriate education to all children and youth with disabilities ages 3–21 and governs how these services are delivered. It is designed to protect the rights of children and their families related to a child’s education and to provide guidance and tools to districts, state, and federal agencies related to the educational provisions for children with disabilities. This law was originally passed in 1975 and was reauthorised in 2004. National Council on Disability IDEA Series—(NCD) https://ncd.gov/publications/2018/individuals-disabilities-education-act-report-series-5-report-briefs: The NDC is an independent federal agency whose role is to advise the President, Congress, and other federal agencies related to policies, programs, and practices that affect people with disabilities.

References Barton, M. 1992. Teachers’ opinions and the implementation and effects of mainstreaming. [online] [Accessed on 8 November 2020] Available from: https://eric.ed.gov/?id=ED350802 Bateman, B., Lloyd, J. and Tankersley, M. 2015. Enduring issues in special education. New York: Routledge. Booth, T. and Booth, W. 1994. Working with parents with mental retardation: Lesson from research. Journal of Developmental and Physical Disabilities 6(1), pp. 23–41. Boyle, M. and Bernards, P. n.d. Exceptional Learners White Paper, One Spirit, One Body. [online] National catholic educational Association. [Accessed on 11 November 2020] Available from: www.ncea.org/NCEA/Learn/Resource/Academic_Excellence/Expectional_ Learners Capp, M. J. 2017. The effectiveness of universal design for learning: A meta-analysis of literature between 2013–2016. International Journal of Inclusive Education 21(8), pp. 791–807. Convention on the Rights of Persons with Disabilities and Optional Protocol. 2006. [online] [Accessed on 4 February 2021] Available from: www.un.org/disabilities/documents/convention/convoptprot-e.pdf. Cosier, M., Carinal, D. and Gomez, A. 2019. A brief report: The state of inclusion and exclusion of students with disabilities in California school districts. [online] [Accessed on 15 December 2020] Available from: www.chapman.edu/education/centers-and-partnerships/

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From ‘Retarded’ Education to Authentic Life thompson-policy-institute/research-and-policy-initiatives/the-state-of-inclusion-andexclusion.pdf Cosier, M., Causton-Theoharis, J. and Theoharis, G. 2013 Does access matter? Time in general education and achievement for students with disabilities. Remedial and Special Education 34(6), pp. 323–332. Danforth, S. and Jones, P. 2015. ‘From special education to integration to genuine inclusion’ In S. Danforth and P. Jones (eds.), Foundations of inclusive education research. New York: Emerald Group Publishing, pp. 1–21. Downing, J. and Peckham-Hardin, K. 2007. Inclusive education: What makes it a good education for students with moderate to severe disabilities? Research to Practice for Persons with Severe Disabilities 32(1), pp. 16–30. Ellis, C., Adams, T. and Bochner, A. 2011. Autoethnography: An overview. Forum: Qualitative Social Research 12(1). Guralnick, M. 1994. Mothers’ perceptions of the benefits and drawbacks of early childhood mainstreaming. Journal of Early Intervention 18(2), pp. 168–183. Harry, B. and Klinger, J. 2007. Discarding the deficit model. Educational Leadership 64(5), pp. 16–21. Hehir, T., Grindal, T., Freeman, B., Lamoreau, R., Borquaye, R., Borquaye, Y. and Burke, S. 2016. A summary of the evidence on inclusive education. [online] São paulo, brazil: instituto alana. [Accessed on 5 January 2021] Available from: https://alana.org.br/wp-content/ uploads/2016/12/A_Summary_of_the_evidence_on_inclusive_education.pdf Individuals with Disabilities Education Act (IDEA, n.d). Individuals with disabilities education act. March 24. [Accessed on 5 April 2022] Available from: https://sites.ed.gov/idea/ Jindai-Snape, D., Douglas, W., Topping, K. J., Kerr, C. and Smith E. F. 2005. Effective education for children with autistic spectrum disorder: Perceptions of parents and professionals. The International Journal of Special Education 20(1), pp. 77–87. Kurth, J., Morningstar, M. and Kozleski, E. 2014. The persistence of highly restrictive special education placements for students with low-incident disabilities. Research and Practice for Persons with Severe Disabilities 39(3), pp. 227–239. LaNear, J. and Frattura, E. 2007. Getting the stories straight: Allowing different voices to tell an ‘effective history’ of special education law in the United States. Education and the Law 19(2), pp. 87–109. Llewelyn, A. 2000. Perceptions of mainstreaming: A systems approach. Developmental Medicine & Child Neurology 42, pp. 106–115 Lloyd, J. W., Tankersley, M., Bateman, B, Balan, C. and Lloyd, P. 2015. Whither special education? In B. Lloyd Tankersely (eds.), Enduring issues in special education. New York: Routledge, pp. 441–464. Lundy, L. 2007. ‘Voice’ is not enough: Conceptualizing Article 12 of the United nations convention on the right of the child. British Educational Research Journal 33(6), pp. 927–942. Marshall, C. 2020. By the numbers: How christian schools service students with special needs. Available from: https://blog.acsi.org/how-christian-schools-serve-students-with-special-needs Maxwell v. Harbor Regional Center. 1979. Fair Hearing Transcript. McConnell, D. and Llewellyn, G. 2002. Stereotypes, Parents with intellectual disability and child protection. Journal of Social Welfare and Family 24(3), pp. 297–317. McGregor, G. and Vogelsberg, R. 1998. Inclusive schooling practices: Pedagogical and research foundations: A synthesis of the literature that informs best practices about inclusive schooling. [online] [Accessed on 7 September 2020] Available from: https://files.eric.ed.gov/ fulltext/ED418559.pdf Meitola, R., Miettinen, S. and Vehmas, S. 2017. Voiceless subjects? Research ethics and persons with profound intellectual disabilities. International Journal of Social Research Methodology 20(3), pp. 263–274. National Council on Disability. 2012. Rocking the cradle: Ensuring the rights of parents with disabilities and their children. [online] [Accessed on 7 September 2020] Available from: www.ncd.gov/publications/2012/Sep272012

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Tammy Bachrach and Timothy Woods National Council on Disability. 2018. The segregation of students with disabilities. [online] [Accessed on 15 September 2020] Available from: https://ncd.gov/sites/default/files/ NCD_Segregation-SWD_508.pdf Pazey, B. L. 2020. Incorporating the voices and insights of students with disabilities: Let’s consider our approach. International Journal of Student Voice 8, pp. 1–27. Press Herald. 1968. ‘Two Win Golden Apples’ Press Herald. 24 April. A-10. Puguch, M., Blanton, L. and Correa, V. 2011. A historical perspective on the role of collaboration in teacher education reform: Making good on the promise of teaching all students. Teacher Education and Special Education 34(3), pp. 193–200. Rogers, J. 1993. The inclusive revolution. The Research Bulletin, (11). [no pagination]. Share, J. 1977. Psychological evaluation for Timothy Woods. Share, J. 1979. Psychological evaluation for Timothy Woods. Stoner, J., Bock, S. Thompson, J., Angell, M., Heyl, B. and Crowley, E. 2005. Welcome to our world: Parents perceptions of interactions between parents of young children with ASD and education professionals. Focus on Autism and Other Developmental Disabilities 20(1), pp. 39–51. Taylor, S. 2004. Caught in the continuum: A Critical analysis of the principle of the least restrictive environment. Research and Practice for Persons with Severe Disabilities 29(4), pp. 218–230. Torrance Herald. 1959. Columbia school opens March 30, Torrance Herald. 19 March, p. 33. [online] [Accessed on 13 December 2022] Available from: https://libarch.torranceca. gov/archivednewspapers/Herald/1958%20Dec%2021%20-%201959%20June%204/ PDF/00000623.pdf Torrance Herald. 1964. School, workshop help them help selves, Torrance Herald. 24 October, p A-3. [online] [Accessed on 13 December 2022] Available from: https://libarch.torranceca.gov/archivednewspapers/PressHerald/1965%20Aug%2025%20-%20Dec%2012/ PDF/00000677.pdf Trainor, A. 2010. Diverse approaches to parent advocacy during special education homeschool interaction. Remedial and Special Education 31(1), pp. 34–47. Triano, S. 2000. Categorical eligibility for special education: The enshrinement of the medical model in disability policy. Disability Studies Quarterly 20(4). Turnbull, A., Turbiville, V. and Turnbull, H. 2000. Evolution of family—professional partnerships: Collective empowerment as the model for the early twenty-first century. In E. Zigler, J. Shonkoff and S. Meisels (eds.), Handbook of early childhood intervention. Cambridge: Cambridge University Press, pp. 630–650. US Department of Education. 2017. Idea section 618 data product: State level data files. [online] [Accessed on 7 September 2020] Available from: https://www2.ed.gov/programs/ osepidea/618-data/state-level-data-files/index.html Wang, M., Mannan, H., Poston, D., Turnbull, A. and Summers, J. 2004. Parents’ perceptions of advocacy activities and their impact on family quality of life. Research & Practice for Persons with Severe Disabilities 29(2), pp. 144–155. Winzer, M. 2000. The inclusion movement: Review and reflections on reform in special education. In M. Winzer and K. Mazurek (eds.), Special education in the 21st Century. Washington DC: Gallaudet University Press, pp. 5–26. Zigmond, N. 2015. Where should children with disabilities receive their education? In B. Bateman, J. Lloyd and M. Tankersley (eds.), Enduring issues in special education. New York: Routledge, pp. 198–213.

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Vignette Six MEET MICHAELA

Hi! My name is Michaela. I’m 14, and I have two sisters. I really love pink, and I love Ariana Grande. I am from Ireland. I live with my mom, my dad, and my two sisters. We have a dog called Tony, a cat called Darcy, and a hamster called Clara. I go to an all-girls secondary school. My favourite part of going to school is being with all my friends. My favourite subject is music, because my teacher is very nice. I like it when teachers don’t go too fast when they are explaining things. I don’t like it when I’m walking and sometimes they bend down to talk to me. I really don’t like that. Outside of school, I love spending time with my friends and having sleepovers. Some of my favourite things to do are swimming and going on the trampoline. Most adults listen to young people and our opinions, but some don’t. Sometimes, if you’re meeting new people, they think that you can’t talk or you can’t think properly just because you’re in a wheelchair. They don’t really bother talking to you because you’re in a wheelchair. It’s like when they bend down to talk to me. I think they think they need to do that because I am short. They don’t! It would be great if in public places they had lots of things, like switches for lights, for example, at different heights—down low and up high. This would mean short people or people in wheelchairs could reach them and turn them on. Sometimes I don’t like it if I’m in town and other people stare at me. I don’t know why they do it, but I don’t like it. If I could change one thing about the world, it would be this—that people didn’t stare or treat people like they are younger than they are. I wish people treated everyone the same. I wish they didn’t say you can’t do certain things. It’s like sometimes they think that people in wheelchairs aren’t as smart as other people or can’t do things even though they can. It’s important for people to know that they shouldn’t treat someone differently just because they’re in a wheelchair or they have a disability. Michaela is 14 years old and lives in Ireland. Vignette co-author: Clíona de Bhailís (National University of Ireland, Galway). DOI: 10.4324/9781003056737-31

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23 DESIGN AS AN AGENT OF CHILDREN’S RIGHTS? Inclusive Mobility Design for Children with Disabilities Cara Shaw and Farnaz Nickpour Interrelationships Between Children’s Rights, Disability, and Design Introducing Children’s Rights and Disability Both the Convention on the Rights of the Child (1989) (CRC) and the Convention on the Rights of People with Disabilities (2006) (CRPD) state that every disabled child has the right to develop to their maximum extent possible, including the ‘fullest possible social integration and individual development’ (Art. 23, CRC). Despite this, availability and access to assistive technology (AT) and interventions which facilitate such development (also a right under CRPD Article 20) vary widely across the globe and, in the majority of cases, remain a neglected area of healthcare, policy, and design (Global Disability Innovation Hub 2018a). The term ‘AT’ refers to a broad range of products and services designed to maintain or improve functioning and independence to enhance quality of life (Newell 2003) for both children and their families. Despite global efforts, there is clearly still significant need and opportunity for improvement in the design and provision of interventions for children with disabilities (Feldner, Logan, and Galloway 2016). The CRC and the CRPD aim to protect and promote a set of internationally mutual beliefs and understandings around the fundamental entitlements of children with disabilities. However, the social imaginaries (Jasanoff 2015), narratives, and cultural constructions (Hollos 2002) surrounding the notions of ‘childhood’ and ‘disability’ differ widely and fundamentally around the world (Archard 2014). Moreover, the evolution of such concepts throughout history has left a trail of models of disability and concepts of childhood which will inevitably continue to evolve in parallel to changes in society (Cooper 2020). Such flexibility is likely to have a profound impact upon how these seemingly rigid conventions are interpreted and implemented and how such notions are entangled, DOI: 10.4324/9781003056737-32

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reflected, and preserved in the design of interventions for children with disabilities around the world (Brown 2001). On a rudimentary level, the CRC and the CRPD offer road maps to realise children’s most basic rights, but on a deeper level, they could be utilised as an opportunity to engage in constructive, creative, critical, and vigorous debate, to challenge and stretch their very content, and to contemplate and reform what could be and what should be (Hagan 2020). Furthermore, several of the General Comments of the CRPD committee refer to the need for professionals to engage in inclusive practices, which in this case could include better training for design professionals.

Introducing Design and ‘Designerly Ways’ Design is widely recognised as an agent of physical embodiment, material culture, and creative problem-solving, through delivering physical products and services. However, when exploring the relationship of design with children’s rights and disability, it is crucial to acknowledge the theoretical foundations and the wider contributions of the design field in its entirety. Relating to design mainly through the lens of applied and physical deliverables not only compromises the full understanding of design as a discipline (including its theories, methodologies, and processes) but also risks obscuring the broader interrelations and potentially significant contributions between the fields of design and children’s rights on multiple levels. Definitions, processes, and outputs of design vary substantially across different sectors and contexts, leaving no commonly agreed terminological foundation to explain or constrain it (Love 2002). Design has thus become a ubiquitous panacea to deal with all forms of communication, product, service, environment, and system development (Buchanan 2001), as well as to frame opportunities and solve problems from individual to global scales. The following reflections on the design discipline interpret and portray certain ‘designerly ways’ (Cross 2001) to help explain foundational terminology, introduce key concepts, and clarify what is meant by the term design in the context of this chapter.

Designerly Thinking and Design Thinking One universal characteristic of design is the way professional designers think, referred to as ‘designerly thinking’. These ways of thinking can be translated and exported for use by non-designers as an access point into the design field, referred to as ‘design thinking’ (Laursen and Haase 2019). Design thinking does not incorporate the methodological and theoretical aspects used by professional designers, but it conveys rather well the application of interconnected principles, practices, mindsets, and techniques, which can be conceptually modelled as three distinct levels (Figure 23.1). Level 1 of this conceptual model contains the core principles of design (e.g. reflective framing, abductive reasoning, integrative thinking, holistic view), which are embodied by design mindsets (e.g. empathic, experimental, explorative, optimistic) and enacted through design practices (e.g. divergent and convergent thinking, visualisation, thinking by doing, collaborative working). The combination of both mindsets and practices makes up level 2. Finally, level 3 contains techniques, encompassing 412

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Figure 23.1

A conceptual model of design thinking.

Source: Carlgren, Rauth, and Elmquist (2016).

the methods and tools utilised by designers (e.g. ethnographic research, journey mapping, storyboarding), which support practice and further develop mindsets.

Design Process and Design Brief One of the most commonly used terms in the discipline is design process, which can be described as the actions carried out within two distinct stages of framing and solving. The first stage of a design process focuses on framing to ‘design the right thing’, and the second stage focuses on solving to ‘design the thing right’ (Nessler 2016). During the earliest stage of the design process, designerly investigations take place as sensemaking or framing exercises (Dillon 1982) to gather insights, better understand opportunities or problems, and define the scope of the design task, often through a written technical document called a design brief.

Design Contributions and Interventions Outcomes of a design process could go beyond physical end products; they include four categories of designerly contributions (Wobbrock and Kientz 2016): A. B. C. D.

Interventional (e.g. products, services, systems) Theoretical (e.g. models, frameworks, principles) Methodological (e.g. methods, processes, techniques) Empirical (e.g. ethnographic insights, analysis findings, data sets)

The category of interventional contributions can be further divided into the four orders of design (Buchanan 2001), which consist of graphics, products, services, and systems. Figure 23.2 outlines the four orders and their relevant design disciplines. 413

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Figure 23.2

The four orders of design and relevant design disciplines.

The Convergence of Design, Children’s Rights, and Disability There is huge potential to close the gap which exists between children with disabilities and their rights, by instigating collaboration and dialogue between the foundational knowledge domains of childhood, disability, and rights at the heart of the design process. These core subject areas are each surrounded by a variety of deep-rooted disciplines of study and practice (Figure 23.3) containing a wealth of knowledge relevant to designing for the rights of children with disabilities. For example, in the field of child-centred design, organisations concerned specifically with design for children’s rights have been established (5Rights Foundation 2018; D4CR Association 2018), whilst research hubs and higher education courses have been launched in the field of AT design and innovation (PPAT 2018; Global Disability Innovation Hub 2018b). Despite these developments, little attention has been channelled into the specific pocket of knowledge at the intersection of these core subject areas concerning design for children’s rights and disability. Disabled children’s rights could manifest in relation to design on three key meta levels: design contributions (what is designed), design processes (how it is designed), and design investigations (why it is designed). In the context of design, disabled children’s rights are often perceived as purely about methods and processes of participation and engagement (predominantly referring to Article 12 of the CRC, the right of the child to be heard), which means designers tend to focus on questions around participatory design processes and design for, with, and by children (Benton and Johnson 2015; Can and İnalhan 2017; Robbé 2017). This focus risks neglecting other articles of the two treaties. 414

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Figure 23.3

The relationship between design and disabled children’s rights.

Although important and worthwhile, this focus on participatory methods has resulted in the current state of design for children with disabilities focusing on what and how we are designing, without asking crucial questions around why we are designing. Such limited designerly investigations have contributed to the deep-rooted issues around viability, feasibility, and desirability of designs for disabled children (Feldner et al. 2016; Global Disability Innovation Hub 2018a). To address these issues, the potential role of design as an active and direct agent of disabled children’s rights is explored and questioned on multiple levels through investigating the intersection of knowledge from relevant fields. In terms of why to design, this chapter addresses the limited investigations into stakeholder narratives and social imaginaries (Jasanoff 2015) in the design process. In terms of how to design, methods for capturing, understanding, and designing for the requirements and desires of a child are discussed. In terms of what to design, the field of inclusive paediatric mobility design is selected as a case study, to examine a range of existing contributions and shed light on the nature 415

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of designerly ways in the field. The chapter also explores questions around who, where, and when to highlight challenges and opportunities to optimise design as an agent of disabled children’s rights.

Design as an Agent of Disabled Children’s Rights The five designerly ways from the reflection-for-transition framework (Figure 23.4) are used as a reference point to structure exploration around how design could act as an agent acknowledging, integrating, and facilitating disabled children’s rights. These closely intertwined designerly ways include investigations, processes, contributions, collaborations, and contexts (Shaw and Nickpour 2021).

Designerly Investigations: Asking Why There is always an intention, a cause, a motive, or a reason why we design. Whether designing out of duty (i.e. deontology), virtue (e.g. as an active citizen), utilitarianism (i.e. for the greater good), or freedom (from external forces), determining the scope of a design project is a critical ethical decision (D’Anjou 2010) in which moral choices are confronted and a degree of design ethics is taken on, whether the designer is conscious of it or not. Designerly investigations are thus considered critical for ensuring design justice (Costanza-Chock 2020). They are required to look at a subject from various points of view, taking into account a range of perspectives, narratives (Grimaldi, Fokkinga, and Ocnarescu 2013), and social imaginaries (Jasanoff 2015) to identify, question, and make sense of insights, before channelling them into a design brief with a clear set of expected outcomes and deliverables. When instigating a process of social design for children with disabilities, openended and complex problems are often accompanied by a sense of urgency. The sense of authority emanated by conventions such as the CRC and CRPD conveys a

Figure 23.4

Reflection-for-transition framework of designerly ways.

Source: Shaw and Nickpour (2021).

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seemingly indisputable narrative that it is imperative to facilitate children’s rights. As a result, designers often hastily accept this dominant narrative without conducting their own designerly investigations or taking time to consider the project scope on a deeper ethical level (Costanza-Chock 2020). Failing to explore alternative narratives in this way limits the framing of why a project is needed and typically leads designers to focus on specifying what interventional solution should be designed, whilst sometimes also overlooking how children’s rights can be embedded within designerly processes or within technical design documents, such as user requirement specifications (URS) and product design specifications (PDS). To acknowledge, integrate, and facilitate the rights of children with disabilities more fully in this early stage of design, the CRC and CRPD should be utilised by designers to inform and support their designerly investigations rather than to replace them.

Designerly Processes: Asking How In order to achieve a truly child-centred design process, the scoping and framing of a design project requires the participation of the child. Incorporating children’s perspectives, requirements, and rights centrally in the design process can elevate the status of their interests and views; psychologically and physically empower them; uncover unacknowledged, unstated, and unmet narratives, requirements, and desires; and achieve more appropriate and satisfactory child-centred outcomes (Benton and Johnson 2015; Can and İnalhan 2017; Robbé 2017). Article 12 of the CRC explicitly states that ‘the child who is capable of forming his or her own views has the right to express those views freely in all matters affecting the child’, which include their opinions, experiences, and ideas around the design of interventions intended for their use. Children thus have the right to be recognised and involved as social actors and expert participants, and designers have the duty and privilege to pay attention and represent children and their views through participation in design and design research (Lomax 2015). Melton and Limber (1992) argue that the essence of Article 12 ‘goes beyond the right to be heard on individual matters to the right to voice opinions on matters affecting children as a class’. Lundy (2007) proposes four conceptual dimensions to the facilitation of Article 12 which design can adopt, including space to create opportunities for children to express their views; voice in terms of facilitating and capturing their views; audience with regards to designers actively listening to children’s voices; and influence for designers to give children’s voices and views due weight. Design is both well-positioned and well-equipped to accommodate these dimensions, through its multitude of empathic and participatory approaches and practices, such as human-centred design, inclusive design, participatory design, co-design, and co-creation, as well as its multiple creative and immersive methods and techniques, such as cultural probes, design fiction, experience prototyping, storyboarding, roleplay, rapid prototyping, and creative workshops. Where a child cannot express their views without support, designers should remain cautious about the views and biases of other stakeholders becoming entangled and pushed forward as the child’s own. To 417

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better facilitate children’s rights, designerly processes should transition from asking if or why children should be included in the design process to instead utilising guidelines, methodologies, and resources about how best to engage with children from the outset, inclusive of children with alternative communication requirements (Ibrahim et al. 2021; Ellis 2007; Hagen et al. 2012; 5 Rights Foundation 2018; D4CR Association 2018), to ensure child-centred framing of the design project before rushing to identify requirements and solutions.

Designerly Contributions: Asking What Designerly contributions could be considered the most obvious agent of children’s rights within design, as the physical deliverables which enable children to independently achieve their rights. Every choice made in design is a choice to include or exclude someone, affect their degree of independence, privacy, participation, or access, and enable or disable them; design could thereby be considered as the force responsible for causing disability (Shew 2018). Designers thus have an ethical duty to consider the accessibility, functionality, and desirability of their contributions based on who or what they intend to include and enable. With regards to the accessibility of contributions, one of the most significant barriers to children with disabilities accessing interventional designs is affordability (Global Disability Innovation Hub 2018a). The CRPD promotes the design and development of affordable AT (Art. 4), particularly in developing countries, where cost presents a major access barrier to AT and, thus, facilitation of rights. As the role of designers and the very definition of design evolves over time, so, too, should the types of contribution being created, moving towards design being applied more evenly across products, services, environments, and systems based on where it can achieve the greatest impact and facilitation of disabled children’s rights. Furthermore, the theoretical and methodological design contributions could also act as powerful agents facilitating children’s rights. This could also lead to design playing a major role in the development of innovative and disruptive business models; a paradigm shift in the way AT is marketed and distributed; new policies, regulations, specifications, and standards to promote greater inclusion for children with disabilities (Hagan 2020).

Designerly Collaborations: Asking Who Designerly collaborations embody the ways designers engage with others throughout the design process, including whom they work with and the nature of their engagement. Well-established practices such as co-design and participatory design enable designers to facilitate interdisciplinarity and foster co-creation by taking on the role as participant-facilitators (Aguirre, Agudelo and Romm 2017). Beyond involving children with lived experience in the design process, the design of inclusive interventions for children with disabilities requires the interlacing of subject-specific knowledge from a wide range of disciplines. The specialist knowledge and experience of 418

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experts from disciplines with a strong child-centred focus can help designers focus on elevating children’s perspectives, requirements, and rights whilst considering the risk of omitting particular aspects of children’s participatory offerings. Interdisciplinarity provides a more holistic, rigorous, and exhaustive approach to child-centred design which ensures children’s voices are deeply considered without disciplinary bias and reduces risk of misinterpretation (Lomax 2015).

Designerly Contexts: Asking Where and When Designerly contexts encompass the ways in which designers are influenced by factors connected with, or relevant to, the time, place, and system they are designing for. Such influences present in a variety of forms, from deep-seated and imperceptibly evolving values, goals, and interests at an individual level, to abrupt changes commanding immediate action at a global level, all of which contribute to the shaping of design outcomes. The contextual dimension of time ranges between thinking about the present and short-term solutions to the future and long-term solutions, whilst the contextual dimension of place ranges from the designer’s personal or local context all the way up to an international or global context. Socially responsible design encourages designers to consider the ethical implications of constraining designs to specific places and consider the needs of those beyond their own context (De Vere and Melles 2013; Tsekleves, Cooper, and Spencer 2021). Techniques such as ethnographic research and usability testing help designers ensure design outcomes are suitable and feasible for the intended users and contexts, whilst open-source design advocates the sharing of knowledge (Aitamurto, Holland, and Hussain 2015). With regards to the temporal context of design, it would be short-sighted to assume that conventions formulated in 1990 (CRC) and 2007 (CRPD) will fulfil the requirements of children for the rest of time; there is always a need for revision, reform, and innovation. Since these rights are just the baseline or ‘minimum viable product’ of what designers should be striving to facilitate, there is significant potential to uncover the unmet needs of children today and speculate how a better childhood could or should look for the children of tomorrow and forecast what their rights might look like. Contemplating and discussing speculative futures or alternative presents can be instigated by utilising approaches such as design fiction, future-gazing, reflective, and critical design (Jakobsone 2017).

Design for Paediatric Mobility Rights: Under the Spotlight Paediatric Mobility as a Fundamental Right Mobility is a necessary and profound part of life which, among children in particular, enables participation and access to a broad range of rights. Within the CRPD, Article 20 is titled ‘Personal Mobility’ and explicitly highlights the right to access quality mobility aids, devices, and assistive technologies. During childhood, it is our ability to move about and independently explore our environment that provides meaningful 419

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access to almost all major areas of life, including physical, emotional, psychosocial, perceptual, and cognitive development; play, recreational activities, and social interactions with peers; active participation in the community and cultural life; self-reliance, self-expression, and education (Bray et al. 2020; Guerette et al. 2013). Each of these areas is also considered as a right, embodied by Articles 6, 13, 15, 23, 24, 28, 29, and 31 in the CRC and by Articles 7, 10, 19, 20, 21, 24, 25, 26, and 30 in the CRPD. For children with mobility disabilities, access to these opportunities is greatly reduced, and the likelihood of developing passive, dependent behaviours thus increases significantly. Lack of self-initiated mobility in early years limits children’s ability to explore their environment, which hinders the development of fundamental skills, such as navigation and spatial cognition (Anderson et al. 2013). Furthermore, around 90% of such brain development occurs during the first five years of life, making early intervention and provision of paediatric mobility an urgent priority to avoid irreversible developmental delays (Brown and Jernigan 2012). Timely access to appropriate paediatric mobility interventions which facilitate independence can thus be deemed instrumental in facilitating the legal rights of children with mobility disabilities. The design of paediatric mobility interventions plays a significant role in determining to what extent these rights are facilitated. For this reason, the case study of paediatric mobility will be used in the remainder of this chapter to further interrogate and provide tangible examples of the interrelations of children’s rights, disability, and design.

Inclusive Design Approach to Paediatric Mobility The CRPD promotes the universal design approach as ‘the design of products, environments, programmes and services to be usable by all people, to the greatest extent possible, without the need for adaptation or specialised design’. Within the global context of designing for children’s rights and disability, we believe design can go one step further, and instead we put forward inclusive design as the bestsuited design approach, due to consideration of ‘extreme users’ (Newell 2003), such as children or people with disabilities, being the centre of focus throughout the design process, as opposed to being a ‘bolt-on’ consideration. Building upon the human-centred and universal design approaches, inclusive design advocates for equity through firstly understanding the full diversity of people’s physical and psychosocial abilities across different contexts before focusing on a specific individual or use case, and then extending this to make design outcomes accessible and usable by the broadest possible population. This approach challenges the more traditional, deficit-oriented approaches used to design for people with disabilities, which typically result in techno-ableist solutions that fail to meet the needs or desires of their intended users (Shew 2018). Inclusive paediatric mobility (IPM) design is the application of an inclusive design approach to create mobility interventions for children, such as wheelchairs, tricycles, standing frames, walking aids, prosthetic (robotic) limbs, braces, and exoskeletons. Throughout history, the landscape of IPM design has responsively 420

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evolved to reflect advances in technology and changes in cultural narratives and understandings around childhood and disability (Butler 2009). It is becoming increasingly important to approach the design process for such products from a child-centred point of view rather than simply downsizing adult mobility products (Feldner et al. 2016). There are three conventional approaches towards the application of inclusive design, which include the ‘special-purpose’ approach, the ‘modular’ approach, and the ‘user-aware’ approach (Clarkson and Coleman 2015). In the context of IPM, the design of powered wheelchairs typically takes on the special-purpose approach, which caters specifically for the needs of disabled individuals without extending to a ‘mainstream’ market. Adapted ride-on toy vehicles utilise the modular approach, which customises mainstream products to cater for the needs of disabled individuals. Supportive go-karts and other mainstream products which also consider the needs of disabled individuals during the design process embrace the user-aware approach.

Inclusive Paediatric Mobility Design From the Perspective of Children’s Rights The following discussion reflects on the IPM design landscape using real-world examples to provide a snapshot of how design currently acts as an agent of children’s rights and disability in the field, shedding light on the nature of designerly ways and exploring challenges and opportunities for the future.

Manifestation of Children’s Rights Narratives in Design Briefs (Investigations) Our interpretations of reality and the way we perceive problems are depicted through the narratives we embrace, which, in the case of IPM design, often centre on equality and children’s rights. For example, the narrative that ‘children with mobility impairments should have equal development and participation opportunities to their peers’ was what motivated a father in the UK to design an elevating power chair known as ‘Turbo’ for his disabled daughter (Everard 1983). Similarly, the narrative that ‘easy access to low-cost and customisable IPM interventions should be a right’ led to the creation of a project called ‘GoBabyGo’ in the United States, which uses a modular design approach to adapt ride-on toy vehicles for children with mobility impairments (Huang and Galloway 2012). These narratives originate from contexts where the states parties officially recognise mobility as a right (Art. 20, CRPD), which highlights the lack of state initiative, funding, and support to genuinely assure and facilitate this right. Engagement with alternative narratives and approaches to framing IPM has remained relatively underexplored over the past 50 years, resulting in a lack of substantial innovation or critical design in the field (Shaw and Nickpour 2021). Extending designerly investigations to consider contemporary narratives around design justice, techno-ableism, empowerment, and rights (Costanza-Chock 2020; Fritsch et al. 2019; Shew 2018) could help critique, alter, and reinvent the 421

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material-discursive landscape of IPM design, which highlights the need to engage with children and disciplines beyond design at the front end of the design process.

Child-Centred Problem Framing and Solving (Processes) The multidisciplinary nature of the IPM field requires input from various stakeholders in the design process, which has often resulted in children’s voices being diluted, repressed, or excluded (Benton and Johnson 2015; Feldner et al. 2016). This is particularly visible when children’s participation is facilitated alongside other stakeholders, such as their parents, healthcare providers, or even designers, as power dynamics can influence the nature or weighting of their input (Gallagher 2008). Meaningful participation of a child can be facilitated at various stages throughout the design process to understand and capture their requirements and desires, using methods such as participatory design, co-creation, design fiction, experience prototyping, storyboarding, role-play, and creative workshop. A case study which stands out for its commitment to child-centred design is that of an upright powered mobility aid which involved the participation of a child throughout its design, development, and adaptation, over the course of nine years (Flodin 2007). In this case, the child uniquely framed the design narrative around their self-image, independence, and physical development, expressing a strong attraction to autonomous upright mobility early on in the design process. This in itself made a stark contrast to the typical seated posture wheelchairs which the child would have otherwise been prescribed. Another example of child-centred design comes from an exploratory project by Desmet and Dijkhuis (2003) to develop a wheelchair that has a more positive emotional impact for children. Through various studies involving both children who use a wheelchair and their parents, it was highlighted that the emotional responses, functional priorities, and aesthetic desires of the children were considerably different to those of the parents.

Design as a Facilitator of Inclusion or Exclusion (Contributions) A recent illustrative mapping review of the IPM design field highlighted the disparity between designerly contribution types, as illustrated in Figure 23.5. The landscape of interventional contributions is shaped largely by an assortment of products, along with a scattering of services and product–service hybrids. Examples of such hybrid interventions include IPM product loan schemes intended to overcome financial accessibility barriers, including the Bugzi (QEF 2018) and the Wizzybug (Designability 2020) wheelchair loan schemes. However, it is important to acknowledge that such charitable initiatives are only necessary due to injustices resulting from states parties failing to uphold disabled children’s rights (Sépulchre 2020). In a parallel research around the relationship between inclusive mobility and legal rights, Ranchordás (2020) explains why access to affordable, inclusive mobility that meets the user’s needs should not be regarded as a separate socio-economic right but as ‘a concretisation of the right to equal treatment’. The idea of mobility as a service (MaaS) rather than as a product 422

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Figure 23.5 Imbalance of designerly contributions to the field of IPM design. Source: Shaw and Nickpour (2021).

owned by an individual is an interesting example of how diversifying designerly contribution types could overcome exclusion and further support rights and equity. It is worth noting that a large pool of dormant interventional design contributions exists in the IPM landscape in the form of design concepts or discontinued products. Learning from mainstream design, IPM interventions could remain relevant for longer by widening the diversity of users and geographic targets through designing flexible products which can adapt to people’s changing needs and changes in context. Adaptability and flexibility to cater for a child’s growth and developmental needs are major factors to consider in IPM design, which often get overlooked and result in exclusion. An example of IPM design which directly addressed users’ ever-changing requirements is the ‘Evolvable Walking Aid’ (Nickpour and O’Sullivan 2016), which was designed to have ‘[r]espect for the evolving capacities of children with disabilities’ (Art. 3 of CRPD). Designing interventions to allow flexibility for changes in children’s disabilities could offer them greater comfort and control over their mobility whilst providing more viable, cost-effective, and sustainable solutions.

Listening to Children Through Interdisciplinary Participation (Collaborations) Stakeholders and experts from different backgrounds and disciplines typically hold contradicting priorities, points of views, and vested interests when it comes to IPM design, which leads to the need for trade-offs. Specific child-centred design methodologies can be adopted to strike a healthy tension between stakeholders and achieve trade-offs 423

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which work for everyone. Facilitating interdisciplinary collaboration which centres on the child’s requirements, desires, and aspirations is one way to achieve this. An example of this is the use of a theoretical framework which was developed to facilitate rigorous interdisciplinary analysis and interpretation of children’s design inputs from a ‘[d]ream wheelchair competition’ (O’Sullivan, Nickpour, and Bernardi 2021) where children drew and/or wrote about their dream wheelchair design (example in Figure 23.6). The framework facilitated interdisciplinary discussion and collaboration to elicit children’s voice and uncover their unspoken narratives, requirements, and desired mobility futurescapes. Trending topics which emerged from the 130 analysed dream wheelchair designs ranged from incremental innovations, such as safety features, weather protection, and storage compartments, to more radical innovations, such as futuristic technologies, the capacity to fly, and magical powers. Many children expressed an altruistic desire for shared participation in their mobility experience through designing considerate accessories or features to engage with or

Figure 23.6

Example of a ‘dream wheelchair’ designed by a young wheelchair user.

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empower their friends, parents, or carers in ways that existing wheelchairs do not. Examples included a built-in tea-making facility for mum, a passenger seat to travel together, a platform for others to keep up, and a machine to give toys to all the other children. These examples dismantle the rhetoric of dependency and establish children’s desire for their future mobility interventions to facilitate child-initiated socialisation. The child-centred insights elicited through such studies could be used as qualitative and quantitative data to guide and inform IPM designer’s direction and decisions (Shaw, Bernardi, and Nickpour 2022). Although such collaboration and involvement of children could be considered as time-consuming and costly, the resulting child-centred design solutions will ultimately be more appropriate and serve their purpose better, which from a rights perspective is an economic and moral investment worth arguing for.

Exploring the Bigger Picture of Children’s Rights and IPM Design (Contexts) When considering the designerly context of IPM design, it is important to acknowledge that over 80% of children in need of a mobility intervention live in low-resource settings which lack funding to cover such costs and lack access to appropriate and affordable devices (Global Disability Innovation Hub 2018a). Factors such as unaffordability, distribution limitations, and unsuitability of design for user or context remain the leading barriers to accessing suitable IPM interventions. The CRPD demands states parties to ‘undertake and promote the development of affordable mobility aids’ (Art. 4) and to share knowledge between and among states to minimise inequality (Art. 32), both of which rely on organisations or individual designers to fulfil. Consideration of the local culture, target user income, distribution models, and long-term suitability for a given context is critical when designing, implementing, and sustaining affordable interventions, particularly in low-resource or developing regions of the world (Tsekleves et al. 2021). The all-terrain ‘SafariSeat’ wheelchair embraced three core design principles of affordability, localised design, and usability in context to create a mobility aid which overcame many of the basic access barriers (O’Sullivan 2021). The designers further championed accessibility and distributive justice by offering an open-source manual containing blueprints for the design to share designerly knowledge across borders.

Optimising Design as an Agent of Children’s Rights Transitioning Designerly Ways The following suggestions in Figure 23.7 summarise visions for transition for each of the five designerly ways to better acknowledge and embed children’s rights in order to optimise design as an agent of children’s rights. Although based on insights from reviewing the field of IPM design, the high-level nature of these suggestions makes them pertinent and applicable to designerly ways in various neighbouring fields of design for children’s rights and disability. 425

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Figure 23.7

Transitioning designerly ways to optimise design as an agent of children’s rights.

Prioritising and Balancing Designerly Ways Having broadly reflected on how designerly ways can facilitate children’s rights and suggested more specific opportunities to acknowledge and embed them, a macro perspective on designerly ways is now applied to identify precedence and priority for transitioning them. The radar chart in Figure 23.8 illustrates the distribution of IPM designers’ attentiveness towards each of the designerly ways in the context of designing for the rights of children with disabilities. The dark-coloured pentagon at the centre of the chart represents the existing focus designers give relative to each of the designerly ways, according to a review of literature in the field; it highlights the imbalanced levels of focus currently given to questions of why, how, what, who, where, and when. The light-coloured pentagon represents the suggested priority future focus to be given to each designerly ways, based on the goal of optimising design as an agent of children’s rights, from the perspective of human-centred and inclusive design experts. Of the five designerly ways, ‘investigations’ bear the most significant influence over the entire design direction, approach, and outcome yet currently receive the least focus; they have hence been prioritised as the area in need of most focus going forward. By starting the design 426

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Figure 23.8

IPM designers’ collective focus on each of the five designerly ways in the context of IPM design as an agent of children’s rights.

process with questions of why, the project scope can be explored more rigorously on an ethical level to enable mindful consideration towards facilitating child-centred design and optimising the rights of children with disabilities. The interrelated nature of designerly ways means aspects of designerly processes, contributions, collaborations, and contexts will naturally be entwined and improved with the heightened focus on designerly investigations.

Conclusion This chapter offers the foundational knowledge and tools required to support those advocating the rights of children with disabilities to enter into discussion with the field of design, recognising its role as an active agent of children’s rights. Firstly, five interrelated designerly ways are critically reflected upon and discussed to explore how design can act as an agent acknowledging, integrating, and facilitating the rights of children with disabilities. These include designerly investigations, processes, contributions, collaborations, and contexts. Secondly, the inclusive paediatric mobility (IPM) design field is focused upon and investigated in order to provide context-specific insights, challenges, and opportunities surrounding designerly ways in practice. Finally, two key directions are proposed in order to help optimise design as an agent of children’s rights, that is, transitioning the designerly ways and prioritising and balancing the designerly ways. Key insights for transitioning to alternative designerly ways are structured using the reflection-for-transition framework of designerly ways (Figure 23.6). The current imbalanced focus on each designerly way and the priority areas of focus in the future 427

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are outlined using a designerly way radar (Figure 23.7). Future design research around this topic should prioritise establishment of a more rigorous designerly investigations framing process which pays specific attention to capturing stakeholders’ narratives and optimising the child-centred design approach. Going forward, incorporating reflective practice, there needs to be a framework for designers to objectively and robustly identify which of the designerly ways on the radar needs more focus from designers and why. Following this, there is a need to explore how any newly proposed designerly ways should be applied in the practice of design for children’s rights. It is suggested that a commitment for equity and social responsibility should be instilled in designers of the future by incorporating topics such as social design, design justice, and active citizenship into design education and integrating designerly ways with engineering sciences. The design of assistive technology and inclusive paediatric mobility interventions for children with disabilities determines to what degree they are both liberated and constrained. Such interventions include products like wheelchairs, walking aids, exoskeletons, prosthetics, and orthotics. These can facilitate access to an array of children’s rights, from education and self-expression to play and participation in the community, which can also directly impact physical, emotional, psychosocial, perceptual, and cognitive development. Availability and access to appropriate paediatric mobility interventions remain a neglected area of healthcare, policy, and design. Of the 93 million children who live with a disability, one in five have mobility limitations. Around three quarters of them do not have access to an appropriate form of mobility intervention, the majority of whom live in low-resource regions of the world. Design processes need to acknowledge and embed the voice and lived experiences of the children who will be using them, inclusive of children with alternative communication requirements. Various resources can be utilised by designers to achieve this. Approaches such as Inclusive Design offer tools and methods to facilitate design with and for people with disabilities, whilst organisations such as Designing for Children’s Rights Association (2018) offer guidelines and principles to facilitate child-centred and rights-respecting design. Further information Borg, J., Berman-Bieler, R., Khasnabis, C., Mitra, G., Myhill, W. and Samant Raja., D. 2015. Assistive technology for children with disabilities: Creating opportunities for education, inclusion and participation. Available from: https://sites.unicef.org/disabilities/files/Assistive-Tech-Web.pdf Designing for Children’s Rights Association. 2018. Available from: http://designingforchildrensrights.org Global Disability Innovation Hub. 2018. Scoping research report on assistive technology: On the road for universal assistive technology coverage. London, UK: University College London, Department for International Development.

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Acknowledgements This research was supported by the Hugh Greenwood Fund for Children’s Health Research.

References 5 Rights Foundation. 2018. Creating a digital world fit for children and young people. [online] [Accessed on 14 January 2021] Available from: https://5rightsfoundation.com/ Aguirre, M., Agudelo, N. and Romm, J. 2017. Design facilitation as emerging practice: Analyzing how designers support multi-stakeholder co-creation. She Ji: The Journal of Design, Economics, and Innovation 3(3), pp. 198–209. Aitamurto, T., Holland, D. and Hussain, S. 2015. The open paradigm in design research. Design Issues 31(4), pp. 17–29. Anderson, D., Campos, J., Witherington, D., Dahl, A., Rivera, M., He, M., Uchiyama, I. and Barbu-Roth, M. 2013. The role of locomotion in psychological development. Frontiers in Psychology 4, pp. 440. Archard, D. 2014. The concept of childhood. In Children: Rights and childhood. 3rd edition. London: Routledge. Benton, L. and Johnson, H. 2015. Widening participation in technology design: A review of the involvement of children with special educational needs and disabilities. International Journal of Child-Computer Interaction 3–4, pp. 23–40. Bray, N., Kolehmainen, N., McAnuff, J., Tanner, L., Tuersley, L. and Beyer, F. 2020. Powered mobility interventions for very young children with mobility limitations to aid participation and positive development: The EMPoWER evidence synthesis. Health Technology Assessment 24(50). Brown, B. 2001. Thing theory. Critical Inquiry 28(1), pp. 1–22 (The University of Chicago Press). Brown, T. and Jernigan, T. 2012. Brain development during the preschool years. Neuropsychology Review 22(4), pp. 313–333. Buchanan, R. 2001. Design research and the new learning. Design Issues 17(4), pp. 3–23. Butler, C. 2009. Effective mobility for children with motor disabilities. GHO Publications, pp. 1–36. Can, E. and İnalhan, G. 2017. Having a voice, having a choice: Children’s participation in educational space design. The Design Journal 20(1), pp. S3238-S3251. Carlgren, L., Rauth, I. and Elmquist, M. 2016. Framing design thinking: the concept in idea and enactment. Creativity and Innovation Management 25, pp. 38–57. Clarkson, J. and Coleman, R. 2015. History of Inclusive Design in the UK. Applied Ergonomics 46(B), pp. 235–247. Convention on the Rights of Persons with Disabilities and Optional Protocol. 2006. [online] [Accessed on 25 January 2021] Available from: www.un.org/disabilities/documents/convention/convoptprot-e.pdf Convention on the Rights of the Child. 1989. [online] [Accessed on 25 January 2021] Available from: www.ohchr.org/en/professionalinterest/pages/crc.aspx Cooper, H. 2020. Critical disability studies and the disabled child: Unsettling distinctions. London: Routledge. Costanza-Chock, S. 2020. Design justice; community-led practices to build the worlds we need. Cambridge: The MIT Press. Cross, N. 2001. Designerly ways of knowing: Design discipline versus design science. Design Issues 17, pp. 49–55. D’Anjou, P. 2010. Beyond duty and virtue in design ethics. Design Issues 26(1), pp. 95–105. D4CR Association. 2018. Designing for children’s rights; integrating children’s rights into design & business process. [online] [Accessed on 13 January 2021] Available from: http:// designingforchildrensrights.org

429

Cara Shaw and Farnaz Nickpour De Vere, I. and Melles, G. 2013. Integrating ‘designerly’ ways with engineering science: A catalyst for change within product design and development. In Industrial engineering: Concepts, methodologies, tools, and applications. London: Information Resources Management Association, IGI Global, pp. 56–78. Designability. 2020. Wizzybug loan scheme. [online] [Accessed on 15 January 2021] Available from: https://designability.org.uk/meet-wizzybug/about-the-loan-scheme Desmet, P. and Dijkhuis, E. 2003. A wheelchair can be fun: A case of emotion-driven design. In Proceedings of the international conference on designing pleasurable products and interfaces. New York: Association for Computing Machinery, pp. 22–27. Dillon, J. 1982. Problem finding and solving. The Journal of Creative Behavior 16, pp. 97–111. Ellis, V. 2007. The narrative matrix and wordless narrations: a research note. Augmentative and Alternative Communication 23(2), pp. 113–125. Everard, L. 1983. The wheelchair toddler. Contact Magazine (Radar). [online] [Accessed on 11 January 2021] Available from: www.daneverard.co.uk/mobility/article02.php Feldner, H. A., Logan, S. W. and Galloway, J. C. 2016. Why the time is right for a radical paradigm shift in early powered mobility: The role of powered mobility technology devices, policy and stakeholders. Disability and Rehabilitation: Assistive Technology 11(2), pp. 89–102. Flodin, E. 2007. Interactive design—The desire for autonomous upright mobility: A longitudinal case study. Technology and Disability 19(4), pp. 213–224. Fritsch, K., Hamraie, A., Mills, M. and Serlin, D. 2019. Introduction to special section: Crip technoscience. Catalyst: Feminism, Theory, Technoscience 5(1), pp. 1–10. Gallagher, M. 2008. ‘Power is not an evil’: Rethinking power in participatory methods. Children’s Geographies 6(2), pp. 137–150. Global Disability Innovation Hub. 2018a. Scoping research report on assistive technology: On the road for universal assistive technology coverage. London, UK: University College London, Department for International Development. Global Disability Innovation Hub. 2018b. GDI Hub. [online] [Accessed on 12 January 2021] Available from: www.disabilityinnovation.com Grimaldi, S., Fokkinga, S. and Ocnarescu, I. 2013. Narratives in design: A study of the types, applications and functions of narratives in design practice. 6th International Conference on Designing Pleasurable Products and Interfaces, pp. 201–210. Guerette, P., Furumasu, J. and Tefft D. 2013. The positive effects of early powered mobility on children’s psychosocial and play skills. Assistive Technology 25, pp. 39–48. Hagan, M. 2020. Legal Design as a Thing: A theory of change and a set of methods to craft a human-centered legal system. Design Issues 36(3), pp. 3–15. Hagen, E., Rsvik S. M., Hiseth, M. and Boks, C. 2012. Co-designing with children: Collecting and structuring methods. 9th NordDesign Conference. Hollos, M. 2002. The cultural construction of childhood: Changing conceptions among the pare of northern Tanzania. Childhood 9(2), pp. 167–189. Huang, H. and Galloway, J. C. 2012. Modified ride-on toy cars for early power mobility. Pediatric Physical Therapy 24, pp. 149–154. Ibrahim S, Vasalou A, Benton A. and Clarke M. 2021. A methodological reflection on investigating children’s voice in qualitative research involving children with severe speech and physical impairments. Disability & Society 37(1), pp. 63–88. Jakobsone, L. 2017. Critical design as approach to next thinking. The Design Journal 20(1), pp. S4253—S4262. Jasanoff, S. 2015. Dreamscapes of modernity: Sociotechnical imaginaries and the fabrication of power. Chicago: University of Chicago Press. Laursen, L. N. and Haase, L. M. 2019. The shortcomings of design thinking when compared to designerly thinking. The Design Journal 22(6), pp. 813–832. Lomax, H. 2015. Seen and heard? Ethics and agency in participatory research with children, young people and families. Families, Relationships and Society 4(3), pp. 493–502.

430

Design as an Agent of Children’s Rights? Love, T. 2002. Constructing a coherent cross-disciplinary body of theory about designing and designs: Some philosophical issues. Design Studies 23(3), pp. 345–361. Lundy, L. 2007. ‘Voice’ is not enough: conceptualising Article 12 of the United Nations convention on the rights of the child. British Educational Research Journal 33(6), pp. 927–942. Melton, G. and Limber, S. 1992. What children’s rights mean to children: children’s own views. In M. Freeman and P. Veerman (eds.), The ideologies of children’s rights. Dordrecht: Martinus Nijhoff Publishers. Nessler, D. 2016. How to apply design thinking, HCD, UX or any creative process from: scratch. [online] [Accessed on 19 January 2021] Available from: https://medium.com/digital-experience-design/how-to-apply-a-design-thinking-hcd-ux-or-any-creative-processfrom-scratch-b8786efbf812 Newell A. 2003. Inclusive design or assistive technology. In J. Clarkson, S. Keates, R. Coleman and C. Lebbon (eds.), Inclusive Design. London: Springer. Nickpour, F. and O’Sullivan, C. 2016. Designing an innovative walking aid kit: A case study of design in inclusive healthcare products. In P. Langdon, J. Lazar, A. Heylighen and H. Dong (eds.), Designing around people. Cham: Springer, pp. 45–54. O’Sullivan, C. 2021. Designing an all-terrain wheelchair: A case study of inclusive design for social impact in low-resource settings. Proceedings of the Design Society, pp. 1133–1142. O’Sullivan, C., Nickpour, F. and Bernardi, F. 2021. What can be learnt from 130 children’s dream wheelchair designs? In Eliciting child-centred insights using an interdisciplinary design analysis framework. Proceedings of the design society. Cambridge: Cambridge University Press, pp. 3409–3418. PPAT. 2018. Principles and practice of assistive technology: MIT course. [online] [Accessed on 20 January 2021] Available from: http://ppat.mit.edu/fall2019/index.html QEF. 2018. Bugzi loan scheme, Queen Elizabeth Foundation. [online] [Accessed on 15 January 2021] Available from: https://qef.org.uk/our-services/qef-mobility-services/ bugzi-loan-scheme Ranchordás S. 2020. Smart mobility, transport poverty and the legal framework of inclusive mobility. In M. Finck, M. Lamping, V. Moscon and H. Richter (eds.), Smart urban mobility: Law, regulation, and policy 29. Berlin: Springer, pp. 61–80. Robbé, F. 2017. Designing with children: A practitioner’s perspective. In K. Bishop and L. Corkery (ed.), Designing cities with children and young people. New York: Routledge. Sépulchre, M. 2020. Ensuring equal citizenship for disabled people: A matter of rights or a matter of costs? Alter 14(2), pp. 114–127. Shaw, C., Bernardi, F. and Nickpour, F. 2022. Child-centred framing through design research: A framework for analysing children’s ‘Dream Wheelchair’ designs to elicit meaning and elevate their voice. Disability and Rehabilitation: Assistive Technology. Ahead-of-print, pp. 1–13. https://doi.org/10.1080/17483107.2022.2071487 Shaw, C. and Nickpour, F. 2021. A framework for transitioning designerly ways: Interrogating 50 years of inclusive design for paediatric mobility. The Design Journal 24(6), pp. 977–999. Shew, A. 2018. Different ways of moving through the world: how does technology fail disabled bodies? Logic Magazine 5. Tsekleves, T., Cooper, R. and Spencer, J. 2021. Design for Global Challenges and Goals. London: Routledge. Wobbrock, J. and Kientz, J. 2016. Research contribution types in human-computer interaction. Interactions 23(3), pp. 38–44.

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24 ASSISTIVE TECHNOLOGIES AS RIGHTS ENABLERS Pedro Encarnação and Albert M. Cook

Picture Alicia, a child, on a playground. She is engaged in the activity of play, moving across the playground, enjoying her friends, playing games, and having fun. The context for her play is multifaceted. Physically, the playground has many surfaces, from hard dirt to asphalt to sand, and includes various pieces of equipment (e.g. the swing set she uses). Her playmates are part of the social context of her play, together with her teachers and aides. There are rules for playing on the school grounds. These constitute the institutional context. Finally, norms and values influence the cultural context in which the play occurs. Alicia has one particular characteristic—she is unable to walk or run independently. To participate in the play activity, as well as in the rest of her life, Alicia uses an assistive technology device—a wheelchair. She also has a modified sand tool like a shovel so she can hold it and dig while sitting in her wheelchair. Sometimes she prefers to be helped out of her chair and sit in the sand to play. A special seat belt that fits on the swing allows Alicia to use it. The merry-go-round is wheelchair-accessible so she can enjoy it along with her friends. This chapter addresses assistive technologies (AT), that is, devices and services like the ones Alicia uses, enabling her to enjoy her right to play in her particular contexts. After defining what assistive technologies are and describing different categories of assistive products, we argue that assistive technologies are enablers for children with disabilities to enjoy their rights. We finally discuss challenges of AT provision for children and ethical issues involved.

What Are Assistive Technologies? Assistive technology (AT) ‘is an umbrella term covering the systems and services related to the delivery of assistive products and services’ (World Health Organization 2018a). An assistive product is ‘any product, instrument, equipment or 432

DOI: 10.4324/9781003056737-33

Assistive Technologies as Rights Enablers

technology adapted or specially designed for improving the functioning of a person with a disability’ (World Health Organization 2002, p. 180). The wheelchair, the modified sand tool, the special seat belt, the adapted merry-go-round, all are assistive products (or assistive technology devices) that Alicia uses to improve her functioning when playing in the playground. An assistive technology service is ‘any service that directly assists an individual with a disability in the selection, acquisition or use of an assistive technology device’ (US 100th Congress 1988, p. 1046). Training Alicia to transfer from her wheelchair to a swing or developing strategies to go through rough terrains in her wheelchair are examples of assistive technology services. Assistive technologies help bridge the gap between the requirements of an activity and the functional capabilities of a person who wants to perform that activity in a given context (Azevedo et al. 1994). There are different ways AT may enable an activity: it can change the requirements of the activity (e.g. using a ramp to avoid steps), augment the capabilities of the person (e.g. a hearing aid), or provide a different way of performing the activity (e.g. using speech recognition instead of writing for computer text entry). AT may augment or replace the function being supported. For example, eyeglasses augment the vision capabilities by appropriately modifying the image perceived by the person’s eyes, while a speech-generating device that reads aloud written messages replaces the person’s speech. There is a continuum from mainstream technologies that include accessibility features to mass-produced AT devices to custom-designed devices. Mainstream products may be designed according to the principles of universal design (also known as design for all): ‘The design of products and environments to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design’ (Sanford 2012, p. 66). In this approach, features that make a product more useful to a person with disabilities (e.g. larger knobs, displays in visual and auditory form) are built into the product. Products designed for all are flexible, usually having many features and arrangements of controls, allowing them to be used by a wider range of persons with different needs and desires that may or may not be related to their abilities (Pullin 2009). In many cases, accessibility features were initially designed for persons with disabilities and, when they became more widespread, came to be incorporated into mainstream technologies. An example is predictive text, in which the device predicts what is being entered after a few letters, saving keystrokes for the user. Another example is automatic speech recognition, a system that interprets what a person says and enters it as if it had been typed. These features were developed for persons with disabilities who encounter difficulty entering text using a keyboard, but are now found in almost every mobile phone and many other systems, such as television remote controls. AT devices may therefore be based on mainstream products, such as smart phones and tablets equipped with accessibility features (Emiliani 2006). Customisation of the system to meet AT goals may be provided through software apps. For example, an app may enable expressive communication for a child using a tablet. 433

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Mainstream technologies that include accessibility features reduce the need for some specialised assistive technologies but do not eliminate it completely. For example, Alicia needs a wheelchair with enlarged wheels for navigating sand, or extra power in a powered wheelchair to navigate over the rough surfaces and move faster, allowing Alicia to keep up with her friends. While general-use wheelchairs may be mass-produced, the need for special features may require custom designs. Assistive products are usually classified according to their function. The International Organization for Standardization (ISO) published in 2016 the sixth edition of the widely used ‘ISO 9999:2016 Assistive products for persons with disability—Classification and terminology’ (International Organization for Standardization 2016). In this standard, AT products are classified as in Table 24.1. From this, it is possible to infer the high number and variety of assistive products. The EASTIN information system (EASTIN 2022), a common front-end for several national assistive technologies databases, contained in November 2021 about 67,400 assistive products. In this chapter, we use the less-granular classification of assistive products proposed by Cook et al. (2020) to briefly describe different categories of assistive products. With the following listing, we want to provide an idea of the breadth of available assistive products and the functions they support. We invite the reader, while going through each of the AT categories, to reflect on the importance of making these technologies available to all children that need them, ensuring they can effectively use them to participate in their desired activities.

Table 24.1  ISO 9999:2016 classification of assistive products ISO class Description 04 05 06

09 12 15 18 22 24 27 28 30

Assistive products for measuring, supporting, training, or replacing body functions Assistive products for education and for training in skills Assistive products attached to the body for supporting neuromusculoskeletal or movement-related functions (orthoses) and replacing anatomical structures (prostheses) Assistive products for self-care activities and participation in self-care Assistive products for activities and participation relating to personal mobility and transportation Assistive products for domestic activities and participation in domestic life Furnishings, fixtures, and other assistive products for supporting activities in indoor and outdoor human-made environments Assistive products for communication and information management Assistive products for controlling, carrying, moving, and handling objects and devices Assistive products for controlling, adapting, or measuring elements of physical environments Assistive products for work activities and participation in employment Assistive products for recreation and leisure

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Control Interfaces When interacting with an electronic device, we do it through a control interface. Keyboards, touchscreens, buttons, and switches are typical examples of control interfaces. Through them, we can choose one option from the selection set of the technology (e.g. type a letter, turn on a light, move a powered wheelchair forward). Alicia’s control interface for her wheelchair is a joystick, allowing her to move forward or backward or turn left or right. When she texts with her friends, she uses a keyboard. Her friend Diana uses a switch to play in the sand with a powered excavator that scoops sand when she presses the switch. When it is possible to choose directly any option from the selection set, we say that we have direct selection. This generally requires one control interface per each of the commands that can be selected (e.g. each letter on a keyboard as a separate key, a powered wheelchair controller may have one button per direction of movement). When we need intermediary steps to make a choice, we have indirect selection (e.g. to choose a command from a group of commands inside a menu, we need first to open that menu). Indirect selection usually requires less control interfaces (the same control interface can be used to choose a group of commands, and then a particular command within that group), but it is more cognitively demanding. It requires memory of the intermediate steps needed to choose the desired option, attention, and sequencing skills, for example. Coded access, in which a person enters a code corresponding to the desired option in the selection set, is an example of indirect selection (e.g. pressing the Control and the C keys simultaneously to copy a text to the computer’s temporary memory). Scanning is an indirect selection method that allows the choice of an option using just a few controls. With as little as only one controlled movement, a person can scan through the selection set and make the desired choice. For example, pressing a switch may start the scan through the rows of an on-screen keyboard, another press may select the row and start the scan through the letters in that row, and a third press may select the desired letter. Control interfaces for direct selection include different types of keyboards (larger, smaller, with different key arrangements), standard and alternative electronic pointing devices (e.g. keypad mouse, trackball), automatic speech recognition, eye-gaze systems (the movement of the user eyes is tracked such that a choice can be made by looking at the desired option in the selection set), brain-computer and bodycomputer interfaces (physiological signals, such as the electric activity of the brain or of a muscle, are used to make a choice). The main control interfaces for indirect selection are single switches. Upon sensing a controlled movement, single switches close an electric circuit, thus making a choice. Many different switches, capable of detecting different movements, exist. An eye blink, the movement of the head, arm, leg, or tongue, inhalation, and/or expiration may be used to activate a switch. With the current technology, it is safe to say that any controlled action may be used to control a technology through an appropriate switch. For example, Alicia’s playmate Alex cannot use his hands, so he controls his wheelchair using switches that sense his head movements. 435

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Seating Technologies Without a physical position that is comfortable and that promotes function, participation in a given activity is not possible. Seating technologies encompass cushions, support systems, and special-purpose chairs. Different materials are used, varying in (a) density (generally, the denser, the more durable); (b) stiffness (how much the material gives under load); (c) sliding resistance (higher sliding resistance prevents the user from sliding, but it also makes transfers more difficult); (d) resilience (or ability to recover its shape after a load is removed or to adjust to a load as it is applied); (e) dampening (ability to soften the impact); (f) envelopment (degree to which the material surrounds the buttocks when the person sinks into it); and (g) recovery (degree to which the material returns to its preloaded state when a load is removed). These properties should be chosen according to the seating objectives: postural control, tissue integrity, comfort, or a combination of these.

Technologies That Enable Mobility Technologies that enable mobility are those that enable individuals to move within their immediate environments and for short distances between environments. Functional mobility can be augmented with low-tech aids, such as canes, walkers, or crutches, or replaced by wheeled mobility systems, such as wheelchairs or scooters. Different types of wheelchairs exist, matching the person’s abilities and the mobility functional purpose. Manual wheelchairs may be propelled by an attendant or by the user. Powered wheelchairs may be used when the person has difficulty propelling a manual version. These are heavier and bigger when compared to manual wheelchairs, which makes them harder to transport from one place to another. Tilt and recline wheelchair features allow adjustment of the seating position. Different frame materials are available, providing different rigidities and weights, adapting the wheelchair to its use: a heavy wheelchair may be used for short-term use, such as rentals at an airport or shopping mall, but rigid and ultra-lightweight wheelchairs are required for sports practice. Standing wheelchairs, which allow a person to transition from a seated to a standing position, are also available, thus enabling activities that are easier to perform standing (e.g. cooking). Customisation of children’s wheelchairs utilising colour and decorations contributes to their autonomy and self-image (Figure 24.1).

Technologies That Enable Transportation Technologies that enable transportation are those that enable a person to move between two locations not within walking distance. These include vehicle modifications for driving, technologies for vehicle access, and technologies that provide occupant protection. Of these, the last two are relevant for disabled children. Assistive technologies for vehicle access include ramps for transfer with wheelchairs into and out of a vehicle, rotating seats to facilitate transfers between a wheelchair and the vehicle seat, and devices to load and store the wheelchair once the user is in the vehicle. Examples of assistive technologies for occupant protection are infant seats or wheelchair tie-down and occupant restraint systems. 436

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Figure 24.1

Examples of adaptations to children’s wheelchairs: (a) the Wizzybug (https://designability.org.uk/) is an electrically powered wheelchair for indoor and outdoor use, intended for pre-school children of minimum age 14 months and a maximum weight of 20 kg (photograph courtesy of Designability); (b) picture taken at Israeli Purim holiday event ‘Making Costume Dreams Come True’, hosted by Beit Issie Shapiro and Holon Institute of Technology in Israel (designer, Amit Fisher; photographer, Jordan Polevoy; used with permission).

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Technologies That Enable Manipulation The American Occupational Therapy Association defines activities of daily living (ADLs) as ‘those oriented toward taking care of one’s own body’ (American Occupational Therapy Association 2014, p. S19), such as bathing, toileting, or dressing. Instrumental activities of daily living (IADLs) include ‘activities to support daily life within the home and community that often require more complex interactions than those used in ADLs’ (American Occupational Therapy Association 2014, p. S19), such as care of pets, meal preparation, or home management. Many of these activities require manipulation (e.g. reaching, grasp/release, lifting, carrying, pushing/pulling, throwing/catching, turning, pinch, point). Low-tech assistive devices may enable ADLs and IADLs, such as modified cutlery (e.g. cutlery with enlarged grips or angled handles), adapted cuisine implements (e.g. implements with non-slipping bases or modified handles), pen/pencil holders, or simply Velcro attachments to facilitate manipulation of a doll. A reacher (longhandled gripper) may be used for manipulation of different objects. Electronic aids to daily living (EADLs) encompass those technologies that enable the control of appliances, electronic devices, or features in the home environment (e.g. lights, doors, window coverings). EADLs have some kind of user interface providing a way for the person to control a powered device. For example, a centralised accessible console may control the TV, the home lights, the heating/cooling system, and the door. Robotic assistive technologies that aid manipulation are also available. These can take the form of a general-purpose robotic arm, fixed to a workstation or to a wheelchair, or of special-purpose robotic tools, such as a small robotic vehicle with a gripper that is controlled by a child to manipulate educational items or toys within the workspace.

Sensory Aids Sensory aids may amplify the visual and/or auditory input or convert the input into another form and convey the information to the person through another pathway. Glasses and hearing aids are common assistive technologies that amplify the input. Mainstream sound amplification systems are another example. A wide range of magnifiers, optical and electronic, is available to amplify a visual input. Captioning systems convert an auditory signal into a visual one. Braille printing, Braille displays, or a long cane provide tactile substitution. Current operating systems, present in computers, tablets, or mobile phones, offer screen reading features, enabling visual-to-auditory conversion.

Technologies for Cognitive Augmentation Technologies for cognitive augmentation encompass those that support skills, such as perception, attention, memory, orientation, knowledge representation and organisation, problem-solving, language, and learning. Information may be easier to perceive, and language barriers may be overcome if simple graphical language is used. The use of headphones may help a person focus on a sound source (e.g. the television or the voice of a professor in a classroom). Daily schedulers and reminder alarms are 438

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precious memory aids available in any mobile phone. An electronic navigation system supports orientation. There is software that allows for the development of ideas in a graphical format and automatically converts it to text. Listing the subtasks that compose an activity, including possible decision points, be it on paper or on an electronic device, may help problem-solving. A text-to-speech reading aid may help in detecting errors in written words by hearing them.

Technologies That Enable Communication Augmentative and alternative communication (AAC) ‘is a set of tools and strategies that an individual uses to solve everyday communicative challenges’ (International Society for Augmentative and Alternative Communication, n.d.). Unaided communication refers to communication using ‘only the person’s own body, such as pointing and other gestures, pantomime, facial expressions, eye-gaze and manual signing, or finger spelling’ (Cook et al. 2020, p. 395). Aided AAC makes use of devices like letters, picture communication boards, computers/tablets/mobile phones with appropriate software, or dedicated speech-generated devices. Common to these devices is the need of having a way to select messages. Different symbol sets exist, from the alphabet to picture-based systems, to represent the different messages. Either direct or indirect selection may be used. Given the amount of the possible communication messages, many times the different vocabulary choices are grouped by theme in communication boards offering several direct-access options within the theme. The user needs to navigate between the different communication boards to build the desired message. Some of the ATs described in the preceding text are used together, and others stand alone. The choice of a configuration of an AT system should be guided by the specific needs of the child. Considering the particular child, with their physical and cognitive characteristics, as well as their preferences, the activity the child wants to engage in, the physical, social, cultural, and institutional contexts, a choice of possible AT solutions should be sought. The process should be centred on the child, aiming at empowering and enabling the child to independently participate in the activities of their choice.

Assistive Products as Rights Enablers Upon going through the description in the previous section, it should be clear that assistive technologies can support many of the functional areas that are instrumental for a child to enjoy their rights. From this perspective, assistive technologies are rights enablers. General principles that shape the Convention on the Rights of Persons with Disabilities (2006) (CRPD) include respect for inherent dignity, individual autonomy, including the freedom to make one’s own choices, and independence of persons; full and effective participation and inclusion in society; equality of opportunity; and accessibility. Particularly for children with disabilities, its Article 7 obliges states parties to take all necessary measures to ensure children with disabilities can enjoy all human rights as any other children. This means that the rights enshrined in the Convention 439

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on the Rights of the Child (1989) (CRC) also hold for children with disabilities. Both CRPD (Article 7) and CRC (Articles 3 and 12) emphasise that the best interests of the child should always be considered and that the voice of children should be heard in all matters affecting them. In many cases, this can only be achieved through assistive technology. Table 24.2 associates some of the rights in CRPD and CRC and the assistive technologies that may be needed for a child to be able to enjoy those rights. Table 24.2 Children’ rights and assistive technologies that may be needed to be able to enjoy those rights Right Accessibility

CRPD article CRC article Assistive technologies 9

Liberty and security of 14 person

37

Freedom of torture or cruel, inhuman, or degrading treatment or punishment Freedom from exploitation, violence, and abuse Liberty of movement and nationality Living independently and being included in the community

15

37

AT that enables mobility and transportation; seating technologies; control interfaces (providing access to information and communication technologies) AT that enables mobility, transportation, and communication; seating technologies AT that enables communication

16

19

AT that enables communication

18

7

Personal mobility

20

AT that enables mobility and transportation; seating technologies Control interfaces; seating technologies; AT that enables mobility, transportation, manipulation, cognitive augmentation, and communication; sensory aids AT that enables mobility and transportation; seating technologies AT that enables communication; control interfaces; seating technologies

19

Freedom of expression 21 and opinion and access to information Education 24

13

Participation in cultural 30 life, recreation, leisure, and sport

31

28

AT that enables mobility, transportation, manipulation, cognitive augmentation, communication; seating technologies; control interfaces; sensory aids AT that enables mobility, transportation, manipulation, cognitive augmentation, and communication; seating technologies; control interfaces; sensory aids

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Table 2 shows that the achievement of children with disabilities’ rights also depends on the availability of AT to enable the underlying functional areas. The need for AT is recognised in CRPD’s Article 4, in which states parties commit themselves to undertake or promote research and development of, to make available, and to provide information on assistive technologies. References to assistive technologies that may be needed to enjoy the corresponding rights are also included in Articles 9, 20, 21, 24, 26, and 29 of the CRPD. Article 32 commits states parties to technical and economic cooperation on AT. One can thus infer that CRPD also (indirectly) establishes the right to AT (de Witte et al. 2018). Assistive technologies may have a mediator or a moderator role in the enjoyment of human rights (Tebbutt et al. 2016). They play a mediator role when there is a direct relationship between AT and the enjoyment of the right. Without an appropriate AT that enables mobility, a child may not be able to enjoy the right to personal mobility (CRPD Article 20). AT has a moderator role when it acts as a facilitator of the achievement of a given right. For example, addition and subtraction may be easier to understand if students have access to manipulatives, physical objects they can put together or apart to simulate the corresponding algebraic operation. Providing a child with AT that enables manipulation may facilitate the learning process, but it is not a condition for learning, since the child can try to understand the concepts from their description or from seeing others using the manipulatives. In the case of Alicia, she would not be able to enjoy her right to play without access to an AT that enables mobility (the wheelchair, which also incorporates seating technologies) and without the necessary environment adaptations (playground equipment modifications). These technologies have a mediator role in Alicia’s right to play. If we enlarge the scope of the analysis, it is also necessary to ensure that Alicia is able to express her will of going to the playground and that she is able to get to the playground. That may require AT that enables communication and AT that enables transportation. These technologies moderate Alicia’s enjoyment of her right to play. The same assistive technologies are also necessary for Alicia to fully enjoy her right to education. AT that enables communication may also be instrumental in achieving the rights of liberty and security of person, of freedom of torture or cruel, inhuman, or degrading treatment or punishment, and of freedom from exploitation, violence, and abuse. In fact, only by enabling Alicia’s communication do we give her the power to denounce breaches to those rights. At this point, we need to stress again that assistive technologies include not only the devices/products but also the services assisting an individual in the selection, acquisition, or use of an AT device. When in the last paragraph we say, for example, that AT that enables communication may be instrumental in enjoying the right of freedom from abuse, we mean not only that the child should have an AAC device but also that they must be knowledgeable of the techniques to use it, while the device should have incorporated the vocabulary needed to communicate about those themes. In the case of Alicia, the wheelchair will be of no use in a playground if she is not able to negotiate uneven terrains or is not able to use the adapted playground equipment. For Noah, Alicia’s friend who has a mild intellectual disability, having a 441

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tablet in class will make no difference unless his teacher takes advantage of it to present the curriculum in an accessible language and provides Noah the opportunity to participate in class using the tablet. Another aspect that needs to be stressed is that AT can only be a rights enabler if the child is at the centre of the process. Not only should the physical and cognitive abilities need to be considered, but also must the child’s subjective preferences be taken into account. It is the child who should have the ultimate word on which activity they want to participate in, in what contexts, and using which assistive technology(ies). The meaning attributed by the child to the activity (e.g. is it a school or leisure activity?) and the role within which the child will be performing the activity (e.g. as a student or as a playmate) need to be clarified with the child and not assumed based on any cultural norms. For example, playing an instrument may mean much more to a child than only getting musical training; it may be an opportunity for participating in a group activity, in this case the school band. The physical, social, cultural, and institutional contexts should all be discussed with the child when assessing different AT solutions. Ideally, different hypotheses should be considered and trialled with the child, and the one preferred by the child should be the one adopted. In any case, follow-up is critical to ensure that the AT solutions do, in fact, meet the child needs. AT providers, caregivers, family members should all contribute to the process, making sure that the best interests of the child are a primary consideration and that children have the opportunity to express their views freely (CRC, Articles 3 and 12; CRPD, Article 7). Such a human-centred perspective on AT is provided by the Human Activity Assistive (HAAT) model (Cook and Hussey 1995). The most recent description of this model is in Cook et al. (2020), and a summary is provided in the following text box. We argued so far that assistive technology can enable children to enjoy their rights. Naturally, those rights should also be respected during the AT service delivery process. Challenges of a child-centred AT service delivery are discussed in the next section.

Challenges of a Child-Centred AT Service Delivery A human-centred approach to AT for children is particularly challenging. First, how to ensure that the best interests of the child are a primary consideration? Are technologies being provided to meet the children’s needs and not the needs perceived by parents/caregivers? For example, one concern sometimes voiced by parents is that providing AAC or mobility aids may delay or prevent the development of autonomous speech or ambulation. Research data puts all such fears to rest. Blackstone (2006) summarised the evidence from several studies addressing myths and misconceptions about AAC. For example, based on a research review of the impact of AAC intervention on the speech production of individuals with developmental disabilities conducted by Millar et al. (2006), Blackstone shows that there is evidence that AAC intervention in fact contributes to gains in speech. Bottos et al. (2001) assessed the effect of early provision of a powered wheelchair to 29 children aged 3 to 8 years 442

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with spastic or dystonic tetraplegia. They observed that even those with severe learning disability or motor deficit were able to achieve a good-enough driving competence, enabling independence and socialisation. While 21 out of 25 parents were not in favour of the powered wheelchair when the study started, 23 expressed positive feelings about it after the study. Jones et al. (2012) conducted a pilot randomised controlled study involving 28 children with various diagnoses, aged 14 to 30 months, showing that the group of children that received a powered wheelchair improved significantly more in several development and function scores compared to the control group. The CRPD, in Article 7, sets that states parties shall ensure that children have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity. How can children’s voice be heard? Disability adds another dimension based on non-typical understanding or expressive ability. It is necessary to make sure children with disabilities have opportunities to express themselves and have both the expressive communication ability and vocabulary to adequately discuss their needs and desires. As stressed by Desmond et al., ‘[p]eople’s preferences, perspectives and goals are fundamental to defining and determining the success of AT’ (Desmond et al. 2018, p. 437). While many assistive technologies have been designed for children, not many have involved children in the design process. When children are involved in the design process, the resulting systems have often differed dramatically from the designs of nondisabled adults. As an example, children designed AAC systems for them (Light et al. 2007). In contrast to existing commercial AAC systems, the child-designed systems integrated multiple functions, including communication, social interaction, companionship, play, artistic expression, and telecommunications. Their designs also focused more on features designed to engage children, such as colours, naming the devices and lights, transformable shapes, popular themes, and humour. In order to reflect the user’s age, personality, attitude, interests, and preferences, the systems were designed to be easily personalised. This result underscores the need for children to be given every opportunity to advocate for themselves and for their AT to be appropriate to their specific needs if their rights are to be assured. Examples of ideas on how to involve children with and without disabilities in co-design of new technologies are: a

Having children working in groups, moderated by adults, using blocks with various shapes and sizes which can be easily attached and detached to design a device (Vaajakallio et al. 2009; Hansen 2017). b Taking children to a comfortable, creative, and imaginative space and having familiar objects with an ‘electronic layer’ added such that children can modify the environment (e.g. lighting, interactive graphics, or music) through the tangible objects, thus simultaneously designing and using the space (Cappelen and Andersson 2021). c Providing diverse methods of collecting children’s views, such as brainstorming, sketching, collecting art supplies and crafting, story-writing, animation-making, and brief interviews (Sanoubari and Dautenhahn 2021). 443

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Providing AT to children has the additional challenge that the AT needs of children often change fast. For example, physical growth can change the required size of a wheelchair. The capabilities of an AT device can become more complex and functional as a child develops more understanding of the technology and the task. An example is the use of word completion while typing that may not be understood by younger children but is very useful to older children as they work to keep up with more advanced writing requirements. AT should be provided in a timely manner; otherwise, it may already be obsolete when made available to the child. To maintain functioning and independence, the child’s AT must be flexible and adaptable. If the AT is based on mainstream devices, this flexibility may ‘only’ require new software. Success of AT systems depends heavily on the expertise of the personnel assisting the user in understanding the use of the system and developing skill in its use. These areas of practice differ significantly between adults and children. Personnel serving children must be capable of a child-centred approach to training and system development while simultaneously involving significant adults who can support the child on a day-to-day basis. As discussed earlier, the AT service delivery process needs to consider children rights. Children rights are often related to ethical principles, and several ethical challenges arise in the provision of AT to children. These are described in the next section.

Ethical Issues, Children’s Rights, and AT for Children Principles advocated by the CRC (Article 12) and by the CRPD (Article 7) call for children to be able to express their needs and wants independently and to be free of undue influence from parents or caregivers. This is an expression of the ethical principle of autonomy, meaning, the right to self-determination and freedom from unnecessary constraints, interference, or loss of privacy. A related ethical challenge is paternalism, which is ‘the interference of a state or individual in relation to another person, either against his will or when the interference is justified by a claim of better protection for the individual’ (Martin et al. 2010, p. 71). Because paternalism assumes that safety is more important than freedom of choice and that it is important to protect people from themselves, it is a factor in the ethical consideration of the rights of children. This has implications for the child’s voice being heard. The opposing perspectives of autonomy and paternalism can lead to conflict when considering the rights of both children and their parents and caregivers. The rights of parents to control their child’s behaviour for safety or other principles (religious beliefs, conformance to cultural norms, etc.) can easily be in conflict with a child’s right to autonomy in their daily life. Another important principle is that of fidelity, which requires faithful, loyal, honest, and trustworthy behaviour by the clinician (Kitchener and Anderson 2011). Addressing fidelity can lead to ethical conflict. These conflicts can be exacerbated when considering the rights of children enabled by AT. The available AT may be inappropriate to the needs of the child, with options limited by the resources of the particular state. 444

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Providing inadequate AT may be done on the basis of ‘something is better than nothing’ accepting the decreased fidelity of the intervention. AT personnel can also find themselves at odds between what they believe is right and what the child and parent want. Other sources of conflict include varying expectations of members of the healthcare team, dictates of organisational policy, or what the profession or the law requires. Stigma is a sign of social unacceptability associated with shame or disgrace (Perry et al. 2009). Assistive technology can be stigmatising or can help to counter stigmatisation. A stigma associated with the use of the AT is that its use implies weakness or less ability. Conversely, AT that is based on mainstream technologies implies competence and can decrease stigma. Stigma can also be related to cultural differences and can be exacerbated by use across different cultures with varying social domains, rules, and norms.

Conclusions The CRPD establishes the rights of children with disabilities and commits states parties to ensure that children with disabilities can fully enjoy all human rights on an equal basis with other children. For many children with disabilities, that is only possible using assistive technology, that is, products adapted or designed for improving the functioning of disabled people and all services inherent to the selection, acquisition, and use of assistive products. From this perspective, we argue that AT is a rights enabler. CRPD also recognises the critical role AT may have in enabling the rights of persons with disabilities, referring in several articles to the need of promoting research and development in AT, and making AT effectively available for all those that may benefit from it. From that perspective, AT is also a right. There is a wide breadth of assistive technology products supporting virtually all possible occupations. It is critical to understand that just providing an AT product to a child is not sufficient. It is necessary to ensure that the product is properly fitted to the child, that training is provided teaching the child and their significant ones the best strategies to use the product, and follow-up must be conducted. AT services are as important as AT devices. AT service delivery for children with disabilities faces several implementation and ethical challenges. An effective AT service delivery process must be centred on the child. Often, imaginative solutions need to be found to ensure that the children’s voice is heard. For example, when assessing a child for an AAC system, to collect the child’s inputs, one needs to find a channel for communication. Deliberate attention should be paid to the perspective of the child. A timely service should be in place guaranteeing that the child has access to the AT when they need it. Delays in AT delivery may compromise child development and may lead to the delivery of AT that is already obsolete when it finally reaches the child. Ideally, the selected AT would have some degree of adaptability such that it can meet the changing needs of the child as they grow. All steps in the AT service delivery process, from assessment to finding a device, to delivery and fitting, to follow-up, should be child-friendly and performed by personnel trained in serving children. 445

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Ethical challenges in AT provision to children with disabilities encompass the respect for children’s autonomy, avoiding paternalism; ensuring fidelity in the AT interventions when the clinician faces a conflict between the child needs and the AT resources available; and considering the impact of a particular AT on stigma. In 2014, the World Health Organisation launched the GATE (Global Cooperation on Assistive Technology) initiative to address CRPD’s Article 32 obligations on technical and economic international cooperation on assistive technology (World Health Organization 2018b). It also supports the realisation of the Sustainable Development Goals (United Nations, n.d.) and the implementation of the resolution WHA71.8—improving access to assistive technology (World Health Organization 2018c). The mission of GATE is ‘to assist Member States to improve access to assistive technology as a part of Universal Health Coverage’, and its vision is ‘[a] world where everyone in need has access to high-quality, affordable assistive products to lead a healthy, productive and dignified life’ (World Health Organization 2018). GATE revolves about 5 Ps: people, products, provision, personnel, and policy. It is a rights-based approach to AT, recognizing that the AT user should be at the centre of the entire process. The focus has been in under-resourced areas of the world, but one needs to keep in mind that, when it comes to AT, many people in developing countries also don’t have access to it. It is expected that GATE will have a big impact all over the world. The GATE initiative aims at improving access to high-quality, affordable assistive technology products in all countries, for all those who need them, across their entire lifespan. As such, the GATE initiative also caters to the interests of disabled children. However, challenges in AT provision for children, like the ones singled out in this chapter, cannot be overlooked. Only through a child-centred AT provision can we enable children’s rights, empowering children with disabilities to develop to the maximum of their potential.

The HAAT Model was developed to portray the interplay between persons doing an activity in contexts using assistive technology. The starting point in applying the HAAT model is to clearly describe the activity the child wants to pursue within specific contexts: physical, social, institutional (e.g., rules and policies), and cultural. The child will bring certain skills to the activity, but she may also have characteristics that might limit her participation. Assistive Technology device(s) may be available to help her overcome the limiting characteristics. The HAAT model considers how the four components (Human, Activity, Context, and Assistive Technologies) interact to provide an assistive technology system. The emphasis of the model is on the person engaged in an activity within chosen contexts. As we saw with Alicia, each component part plays an important role that can affect her opportunity, but it is the combination of all four that results in success. The HAAT model provides a formal way of evaluating this total system for a particular situation.

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Key takeaways Assistive Technology (AT) encompasses products adapted or designed for improving the functioning of disabled people and all services inherent to the selection, acquisition, and use of assistive products. There is a wide variety of AT. ATs are rights-enablers. AT services are critical! While making available an assistive product may be a condition for someone to be able to engage in a given activity, it is not enough. The use of an assistive product requires efficient strategies and the best possible matching between the person’s needs and the technology. AT provision for children presents challenges, including ensuring that the best interests of the child guide the process and that the children’s voices are heard; involving children in AT design; ensuring children receives AT at the right time; the need for products that ‘grow with the child’; having trained personnel supporting children. Ethical challenges of respecting children’s autonomy, avoiding paternalism, ensuring fidelity of AT providers, and considering the effect of AT on stigma must be addressed when providing AT for children and enabling their rights. Global initiatives in AT are based on a rights-approach, but specific needs of children cannot be overlooked to ensure that AT provision is respecting and enabling children’s rights.

References American Occupational Therapy Association. 2014. OT-Practice-Framework-Table-1-Occupations. [online] [Accessed on 22 June 2021] Available from: www.aota.org/~/media/Corporate/ Files/Advocacy/Federal/coding/OT-Practice-Framework-Table-1-Occupations.pdf Azevedo, L., Feria, H., Nunes da Ponte, M., Wann, J. E. and Recellado, J. G. Z. 1994. Heart report: Line E—Rehabilitation technology training: E3.2 European. Brussels: European Commission. Blackstone, S. 2006. False beliefs, widely held. Augmentative Communication News 18(2), pp. 1–4. Bottos, M., Bolcati, C., Sciuto, L., Ruggeri, C. and Feliciangeli, A. 2001. Powered wheelchairs and independence in young children with tetraplegia. Developmental Medicine and Child Neurology 43(11), pp. 769–777. Cappelen, B. and Andersson, A. P. 2021. Trans-create—Co-Design with persons with severe disailities. In I. Verma (ed.), Universal design 2021: From special to mainstream solutions. Amsterdam: IOS Press, pp. 87–101. Convention on the Rights of Persons with Disabilities and Optional Protocol. 2006. [online] [Accessed on 11 March 2022] Available from: www.un.org/disabilities/documents/convention/convoptprot-e.pdf. Convention on the Rights of the Child. 1989. [online] [Accessed on 11 March 2022] Available from: www.ohchr.org/en/professionalinterest/pages/crc.aspx Cook, A. and Hussey, S. 1995. Assistive Technologies: Principles and practice. 1st edition. St. Louis: Mosby.

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Pedro Encarnação and Albert M. Cook Cook, A., Polgar, J. and Encarnação, P. 2020. Assistive technologies: Principles & practice. 5th edition. St. Louis, Missouri: Elsevier. de Witte, L., Steel, E., Gupta, S., Ramos, V. D. and Roentgen, U. 2018. Assistive technology provision: Towards an international framework for assuring availability and accessibility of affordable high-quality assistive technology. Disability and Rehabilitation: Assistive Technology 13(5), pp. 467–472. Desmond, D., Layton, N., Bentley, J., Heleen Boot, F., Borg, J., Maya Dhungana, B., Gallagher, P., Gitlow, L., Gowran, R. J., Groce, N., Mavrou, K., Mackeogh, T., McDonald, R., Pettersson, C. and Scherer, M. J. 2018. Assistive technology and people: A position paper from the first global research, innovation and education on assistive technology (GREAT) summit. Disability and Rehabilitation: Assistive Technology 13(5), pp. 437–444. EASTIN. 2022. EASTIN—Searches—Assistive products. [Online] [Accessed on 11 March 2022] Available from: www.eastin.eu/en-gb/searches/products/index. Emiliani, P. 2006. Assistive technology (AT) versus mainstream technology (MST): The research perspective. Technology and Disability 18(1), pp. 19–29. Hansen, A. 2017. Co-Design with Children. How to best communicate with and encourage children during a design process. [online] [Accessed on 22 June 2021] Available from: www.ntnu.edu/document s/139799/1279149990/13+Article+Final_anjash_fors%C3%B8k_2017-12-07-20-11-11_ Co-Design+with+Children+-+Final.pdf/b8dd19c4-d2b1–4322-a042–718e06663e13 International Organization for Standardization. 2016. ISO 9999:2016 Assistive products for persons with disability—Classification and terminology. 6th edition. Geneva: ISO. International Society for Augmentative and Alternative Communication. n.d. ISAAC—What is AAC? [online] [Accessed on 23 June 2021] Available from: https://isaac-online.org/ english/what-is-aac/ Jones, M., McEwen, I. and Neas, B. 2012. Effects of power wheelchairs on the development and function of young children with severe motor impairments. Pediatric Physical Therapy 23(2), pp. 131–140. Kitchener, K. and Anderson, S. 2011. Foundations of ethical practice, research, and teaching in psychology and counseling. 2nd edition. New York: Routledge. Light, J., Page, R., Curran, J. and Pitkin, L. 2007. Children’s ideas for the design of AAC assistive technologies for young children with complex communication needs. Augmentative and Alternative Communication 23(4), pp. 274–287. Martin, S., Bengtsson, J. and R.-M., D. 2010. Assistive technologies and issues relating to privacy, ethics and security. In M. Mulvenna and C. Nugent (eds.), Supporting people with dementia using pervasive health technologies. London: Springer, pp. 63–76. Millar, D., Light, J. and Schlosser, R. 2006. The impact of augmentative and alternative communication intervention on the speech production of individuals with developmental disabilities: A research review. Journal of Speech, Language and Hearing Research 49(2), pp. 248–264. Perry, J., Beyer, S. and Holm, S. 2009. Assistive technology, telecare and people with intellectual disabilities: Ethical considerations. Journal of Medical Ethics 35(2), pp. 81–86. Pullin, G. 2009. Design meets disability. Cambridge: MIT Press. Sanford, J. 2012. Universal design as a rehabilitation strategy. New York: Springer. Sanoubari, E. and Dautenhahn, K. 2021. Children designing robots: A modified cooperative inquiry approach to developing social robots. In Proceedings of research through design workshop in ACM/IEEE international conference on human-robot interaction. New York: ACM, pp. 111:1–111:4. Tebbutt, E., Brodmann, R., Borg, J., MacLachlan, M., Khasnabis, C. and Horvath, R. 2016. Assistive products and the sustainable development goals (SDGs). Globalization and Health 12, pp. 1–6. United Nations. n.d. The 17 goals sustainable development. [online] [Accessed on 7 July 2021] Available from: https://sdgs.un.org/goals US 100th Congress. 1988. Technology-related assistance for individuals with disabilities act of 1988 (Public Law 100–407). s.l.:s.n.

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Assistive Technologies as Rights Enablers Vaajakallio, K., Lee, J. J. and Mattelmäki, T. 2009. “It has to be a group work!”: Co-design with children. In F. Garzotto (ed.), IDC ’09: Proceedings of the 8th international conference on interaction design and children. Danvers: ACM, pp. 246–249. World Health Organization. 2002. International classification of functioning, disability and health (ICF). Geneva: WHO. World Health Organization. 2018a. Assistive technology. [online] [Accessed on 22 June 2021] Available from: www.who.int/news-room/fact-sheets/detail/assistive-technology World Health Organization. 2018b. Global cooperation on assistive technology (GATE). [online] [Accessed on 7 July 2021] Available from: www.who.int/news-room/feature-stories/ detail/global-cooperation-on-assistive-technology-(gate) World Health Organization. 2018c. WHA71.8 — Improving access to assistive technology. [online] [Accessed on 7 July 2021] Available from: https://apps.who.int/gb/ebwha/pdf_files/ WHA71/A71_R8-en.pdf?ua=1

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25 ‘LOOK AT US . . . WE’RE WALKING’ Parental Advocacy vs a Child’s Privacy in the age of Internet Sharing Stephanie Patterson and Kathleen McGoldrick Introduction Community supports have played an important role in society throughout time (Schilling, Gilchrist and Schinke 1984). People gain information, assistance, and encouragement through family and friends, but sometimes individuals are faced with distinctive experiences that family and friends do not share and cannot understand. In the United States, as in many countries, this is often the circumstance for people with disabilities and their families. Unlike other minority groups, where one’s intimate circle may share the same culture or religion, people with disabilities’ and their families’ experiences can be unique. For them, reaching out to individuals outside their normal circles is necessary for information and aid (Baum 2004; Blum-Ross and Livingstone 2017; DeHoff et al. 2016; Ammari et al. 2014; Huws, Jones and Ingledew 2001). Over many decades, worldwide traditional support systems and advocacy initiatives have been face-to-face group meetings with a built-in understanding that a certain level of anonymity was possible and, perhaps, preferred. With the rise in social media reliance for almost every aspect of daily life, many people with disabilities and their families are finding their support needs and opportunities for advocacy engagement online. Some advocacy sites begin as personal blogs and then gain popularity, developing into a forum for activism. This is the case with the site of British parent and activist Sara Ryan, whose blog and subsequent book titled Justice for Laughing Boy (Ryan 2018) began as an advocacy initiative after the death of her son. He tragically drowned in a bath while being cared for in an NHS specialist unit. Her outreach developed a following of parents and family members of other children with disabilities through posts on social media sites like Instagram and Twitter (#Justice for LB: Pass it on please 2017). Pew Research Center states that 79% of parents using social media say they receive useful information from online friends and sources (Duggan et al. 2015). Through 450

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this medium, resources such as information, assistance, comfort, and entertainment are readily accessible to individuals with a disability, their parents, families, and friends. Among the available resources utilised by a significant number of people worldwide are the numerous internet sites and forums of disability-related advocacy organisations, many focusing on the needs of parents with a child with disabilities. These sites are convenient to use and provide understanding and community along with information and resources, but some critics feel this assistance, when utilised by parents, comes at the cost of a child’s privacy. For example, not all web posts are anonymous. Many reach an international audience, with the ability to monitor who sees the information relinquished from the posters’ control once they hit ‘send’. Reposts and shares multiply exponentially with each social media platform involved. Once a post ‘goes viral’, there is no way to undo it. Adding to the loss of anonymity, contributors’ online support forums, like themighty.com or parentingspecialneeds. com, and social media groups on apps like Facebook, Twitter, and Instagram, frequented by people with disabilities and parents of a child with disabilities, often include personal information, such as names and photos, in the profile section. This material, coupled with posts that include pictures of their child with disabilities and narrative accounts of daily activities and experiences that commonly reveal intimate and potentially embarrassing information, provides a global digital footprint that is all but impossible to erase. The ease of access and shared the experiential nature of the communications continue to make these sites overwhelmingly popular among parents with a child with disabilities looking to provide and dispense information online. However, when parents are seeking desired support, recognition, or looking to create online connections to validate their experiences and emotions, just how much personal and visual information about their child needs to be disclosed? What facts are important to include for clarity, and what are extraneous? What about detailed, descriptive posts that seem more like just an opportunity to vent than a way to provide information? Many routine situations in child-rearing involve strong emotions and sometimes struggles that can become physical, but putting it all out there by posting the particulars on the internet for untold numbers of people to read can be seen as an invasion of one’s privacy. Even if unwittingly, parents’ sometimes-maudlin sharing is no less manipulative in its goal of eliciting support through pity than were the old-fashioned telethons used to obtain financial funding for large organisations seeking cures in their heyday. For years in the United States, throughout many shows and telethons for organisations such as United Cerebral Palsy (UCP) and Muscular Dystrophy Association (MDA), the theme song ‘Look at Us We’re Walking’ by Gettinger and Reed was a production highlight, sung while, visibly, children with disabilities walked across a stage. Much like these telethon hosts, parents are ‘parading’ their child with disabilities in front of a tremendous international audience (Rader 2015), often without their consent and for purposes that may not benefit them directly. In fact, they could be seen as using their child’s disability as a prop and, in some extreme cases, even as a ploy for attention and recognition, much like, for example, the parent of an autistic adult who turns to Twitter to post pictures and blurbs that often show the child 451

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in various stages of undress while going for rides in the car or walks outside. The numerous supportive comments show that these photos and texts address issues that many parents experience. However, the inclusion of the parent, often grinning in the photos, lends an air of sarcastic humour to the posts, as if the poster and the reader are sharing a joke that excludes the adult child. Also, many posts that discuss difficult situations, such as tantrums, potty training, social anxiety, and school-related issues, often do not provide necessary support for the child; rather, they tend to exploit the child’s behaviour as a way to praise the parent’s handling of the situation. While this is certainly not the case for all social media users, is it possible that in their quest to gain and provide support, some parents have created yet another scenario where an adult’s own needs take precedence over the autonomy of a child with a disability?

Shared Identities Based on Needs for Support The need for support in raising a child with a disability spans many aspects of parenting issues both universal and unique. These responsibilities and concerns can include the scheduling and providing of crucial medical and psychological care, the juggling of numerous doctor visits, periods of illness, surgeries, and extended rehabilitation and recuperation cycles. Often, having a child with a disability requires parents to assume the roles of personal care attendant, occupational therapist, physical therapist, counsellor, and advocate. In such cases, they often struggle with trying to be just parents (Including Samuel 2009). Such need for focused vigilance and care can result in a high level of co-dependency between the parent and child when so many aspects of their lives are intertwined. These complex relationships are often based on deep love, concern, and self-sacrifice, but such intimacy can easily cause a level of enmeshment. Divides between parent and child can either be purposefully discarded, such as a father who runs marathons or plays football while pushing his son’s wheelchair, or occur naturally, as when a mother takes on the role of her child’s personal aide. An example of this level of enmeshment between parent and child is shown in the film Including Samuel (2009), where the father continually strives to assure accessibility and inclusion for his son by immersing himself in his child’s experiences, using his own body as a ‘replacement’ for his son’s in games and physical activities. In similar fashion, today’s ‘Autism Mom’ is ‘expected and encouraged to do anything and everything in pursuit of normalcy’ (Waltz 2015, p. 355) for her child, which often results in a lack of boundaries between what experiences are the parents’ to relate and what narratives might lie within a child’s right to share alone. These fuzzy borders can also encompass whole families, as reflected in the phrase ‘living with autism’ often used to describe the family’s experience related to a member’s autism and not the individual autistic person’s own experience (McGuire 2016). This enmeshment often shows up in social media as well, with many parents incorporating either disability terminology, like Autistic Family, or potentially inappropriate slang, like Gimpy Dad, to identify themselves. In these instances, it is easy to see how boundaries become blurred between where parental identity ends and child identity begins (Blum-Ross and Livingstone 2017). According to Richard Lavoie (2007, 452

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p. 142), ‘[p]arents cannot protect and guide without controlling and restricting’. That control is a normal part of a parent’s responsibility. But it can become too much, especially if it involves the disclosure of a child’s personal information beyond what the child may want shared or is comfortable exposing. It makes sense that to provide the care, support, structure, and discipline needed by their child with a disability, parents naturally reach out to experts and peers, but the potential harm posed to children when parents overshare their personal information should take precedence over the parents’ control over the narrative (Gligorijevic 2019). In the United Nations Convention on the Rights of the Child (1989) (CRC), Articles 16 and 19 address the issues of privacy and exploitation, and many countries have adopted these articles as guidelines for what is acceptable in social media posts about children. Article 22 of the United Nations Convention on the Rights of Persons with Disabilities (2006) reinforces the importance of respect for privacy for a person with a disability. But the fact that there are laws and guidelines to protect children’s rights does not necessarily keep parents from disregarding issues of privacy. In many situations throughout the world, parents are completely unaware that what they are doing is a problem at all. Granted, including anecdotal and behavioural information in posts is often required when coping with a specific situation. However, within that act of reaching out, mothers and fathers may or may not be mindful of the control they have over every aspect of the disclosure of their child’s intimate experiences. Nor do some seem aware that, in the light of the exponential growth of social media, including numerous and exhaustive search engines, such information has the potential to remain indefinitely, globally available, and linked to their child long after its original purpose expires.

Social Supports and Advocacy Social supports have been utilised by parents of a child with a disability for as long as these supports have existed. Guardians have sought and provided advice, relief from stressors, camaraderie, and help by accessing assistance established by organisations, healthcare providers, friends, and family members throughout time (Schilling et al. 1984). Humans gain skills and knowledge through watching and interacting with others. DeHoff et al. (2016) found that parents best learn caring techniques, advocacy skills, and emotional coping abilities through parent-to-parent interactions. Such sharing is beneficial in practical and personal ways. Social supports have been shown to help mothers and fathers by bolstering self-esteem and confidence, both of which are necessary tools when learning to care and advocate for a child with a disability (Schilling et al. 1984). Historically, assistance provisions have been both formal—those created by parent groups, healthcare providers, or large advocacy organisations—and informal—friends and family members. Realising the importance of combining these two, Schilling et al. (1984) suggested that practitioners incorporate informal groups into their practice to provide parents with not only social supports but also the skills needed to locate and cultivate a support system. The landscape of advocacy systems and support has changed with the rise in social media reliance. Many people with a disability and their families are now finding aid 453

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and encouragement online (Baum 2004; DeHoff et al. 2016; Ammari et al. 2014; Huws et al. 2001). With financial demands frequently requiring parents to work longer hours, the internet’s convenience, unlimited outreach, and accessibility make it an easily available and invaluable resource. Younger parents especially look to digital media to connect with and seek advice from others (Duggan et al. 2015). Unless extended family members or close friends have a similar understanding of a disabling condition, there can be a lack of familial access to information and awareness about a person’s experience. The resulting isolation can be significant, and this is where the internet has become so important. Both children and young adults living with disabilities and their parents often use online resources to forge a network with physically distanced peers (Fleischmann 2005; Kirk and Milnes 2015). Website groups offer a sense of community that reduces feelings of separation through informal, virtual support systems. With no set time and place required to attend, no need to leave the house, find someone to watch the children, or even change out of pyjamas, parents can access assistance at their convenience, making it much more attractive than in-person groups. In addition, many parents who post on social media feel that these venues provide a less-judgmental experience than offline personal interactions, even though some have experienced instances where others responded to posts with comments that express veiled criticism of their choices (Blum-Ross and Livingstone 2017; Duggan et al. 2015). Despite the risk of possible negative feedback, most interactions are viewed as beneficial to both posters and readers, leaving people feeling empowered by the validating feedback they receive in the form of ‘likes’ and ‘shares’ (Steinberg 2017) and others feeling that the knowledge they gain provides a sense of being in control of an often-uncontrollable situation (Fleischmann 2005). Today, help is provided in an entirely different way than it was decades ago, but the line between what is defined as support and what is defined as advocacy has remained blurred. There are numerous online support and advocacy efforts, and each serves a unique purpose. With the exponential growth of social media as a platform to connect and inform, disability advocacy organisations now incorporate its use into all aspects of their media campaigns. In addition to following an organisation’s informational profile on Twitter, Instagram, and Facebook, many organisations like Autism Speaks (2022) have created parent-to-parent or parent-to-expert forums where social supports are provided on diverse topics in informal question-and-answer style, with readers able to scroll through previous threads, looking for advice, or start a new thread of their own. Additionally, cross-advocacy online organisations like themighty. com (2022) have grown in popularity. These websites offer space for participants to connect on topics ranging from race issues to disability and illness. While advocacy groups provide an effective forum for advice and quick answers to questions, the purpose of social media posting seems to be more obscure in nature, with writers often presenting detailed personal accounts describing an incident or commenting on topics of interest. ‘Sharenting’ is a relatively new term that is used to describe this manner of web posting. Steinberg (2017, p. 842) refers to it as ‘the many ways parents share details about their children’s lives’. Like blogging, this type of sharing has become popular with online forums such as themighty.com (2022), 454

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specialneedsjungle.com (2020), and parentingspecialneeds.org (2022), all of which provide a growing number of posters a forum to connect with others. At first glance, the posted narratives may seem to be a means to garner sympathy for the rigours of caring for a child with a disability or as a cry for help over the toll it takes on the family, but one only need look closer to discover a common thread that has always been evident in parent advocacy groups. The raw honesty that frames these accounts is often purposefully blunt, gritty, and uncomfortably personal and serves to expose the lack of assistance available to families and to people with a disability (Carey, Block, and Scotch 2020) in the form of community, financial, and educational resources. This raw honesty can often be difficult to read, like the post made by a parent admitting their relief at finally putting their son with a profound disability in a residential facility to forget he exists. However, parents assert that this cry for help is not for themselves but for their child, since without necessary supports, they cannot provide needed care (Carey et al. 2020). Conversely, self-advocacy groups typically reject a focus on the personal narrative to garner support due to the stigma it perpetuates around disability as a burden (Rader 2015). While such understandable parental concerns are often underscored by valid issues, disclosing intimate details of a child with a disability’s life on the internet, even when doing so to advocate for much-needed services, often leads to other problems.

Sharenting: The Cost to a Child’s Autonomy and Privacy Concerns about violations of a child’s autonomy and privacy have increased markedly due to the ability to include visual offerings in social media. In 2014, Ammari, Morris, and Schoenebeck found that 89% of parents surveyed were active Facebook users who often included pictures (40%) and videos (18%) of their offspring with a disability in posts. By nature, Instagram use requires photos, and many Twitter users include photos or videos when posting. These images, along with stories relayed through narrations of life events, may or may not paint their child in a favourable light. Socially acceptable posts are often framed as light-hearted recounts of instances, such as a tantrum or special food request. While the posts are more well-received if they are framed to end on an upbeat note, or they provide a means for the poster and reader to share a knowing laugh about similar situations (Ammari et al. 2014), not all exchanges are harmless. While not intentionally injurious, many posts focus on negative interactions and experiences. Relaying the experience, for example, of a child driving a parent crazy and seeing other parents comment about their similar experiences and describe their frustration with their child’s behaviour provide an overall means to connect over shared struggles. A study by Morris (2014, p. 1280) showed that ‘mothers of children with developmental delays used a smaller percentage of positive words in posts containing their child’s name than mothers not reporting developmental delays’. By nature, these posts paint a pessimistic, often-demeaning picture on a much greater scale than posts made by parents of typically developing kids. While there is no denying the convenience of internet outreach, there is also no denying that it often comes at the cost of the child with a disability’s privacy. 455

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Common accounts of activities and experiences frequently reveal intimate and potentially embarrassing information. For example, a contributor on themighty.com wrote that during the 2020 Covid-19 pandemic lockdown, her 8-year-old son was now potty-trained (lynnlovesdonuts 2020). While sharing this very personal milestone may not cause embarrassment when found later in life if revealed as a developmentally appropriate or even advanced achievement, such information has the potential to negatively affect this child’s life immediately. Most likely, parents of friends and classmates see these posts, and there is a valid reason to believe the information could be knowingly or unknowingly shared within the reader’s family. The creation of this international digital footprint is now tied to this child for the remainder of his life, with no control over the breadth and scope of its access. The potential for overexposure of intimate information multiplies when it is a key factor in economic survival (Nottingham 2019). With many disability-related costs not covered by insurance, a recurring circumstance affecting families is financial concerns. Often, a mother or father can only work part-time or not at all to manage appropriate care. Consequently, many parents of a child with a disability have morphed simply relating their experiences online into a career by becoming well-known on these sites. Their experiences become a brand whose core identity often includes the child with a disability’s name and image. Their efforts can attract thousands of followers, who then add to the notability and financial success of both these sites and the contributors. Instagram influencers can often expect to earn approximately $10 (US) per post in gifts, products, and cash if they have fewer than 100,000 followers, and that number increases with each minimum threshold of followers an influencer reaches (Petal 2020). Typically, these micro-celebrity parents’ online personas revolve around the sharing of information about their child with a disability. When this activity becomes a career that is reliant on consistent, daily personal accounts exposing the inner workings of their home life and parental experiences, the pressure to constantly produce new material is substantial. To stay in the spotlight and subsequently gain more prominence for the organisations and themselves, exaggeration, shock techniques, and sensationalist details are sometimes utilised and included in the recount of their family experiences, like in the case of the parent whose Twitter feed includes family pictures as he provides daily insight into their lives and adventures. Much like a reality TV series, the reader is pulled in and waits to see how the trip to the dentist ended, where the next place his autistic child will disrobe will be, or how his ‘neurotypical’ child performed on a school exam. As in many situations involving an audience, the point is to have more people interested and repeatedly following posts. With the need to produce narrative that maintains and grows an audience, the slippery slope of exposing too much of a child’s personal information without their permission grows. It must be stated here that most online contributors share personal experiences which can be cathartic for the poster and provide much-needed information and social connectedness for the reader (Fleischmann 2005), and there are certain measures in place for protection. To foster confidentiality, numerous social media platforms require someone to be ‘friends with’ or to ‘follow’ someone before seeing their 456

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posts. But that privacy is not always maintainable. While Facebook support groups can be set up as secret or private, in many circles, all members are able to see profiles of other members even without being friends outside of the group. Adding to this dilemma, not all website forums require contributor anonymity. Countless participants use their names when posting or commenting, and most posts are shared on multiple platforms simultaneously. The potential for the distribution of information can be exponential and ongoing. And herein lies the problem. Do children have a say in what parents post online? What happens when the protector becomes the perpetrator? While adults can set their own parameters when sharing their personal information in the virtual world, a child who is the subject of parental online postings often cannot. In the United States, 92% of 2-year-old children already have an online presence (Steinberg 2017). Oswald, James, and Nottingham (2016) refer to ‘generation Z’, young children who have grown up in a world that has always had the internet, technology, and social media, as ‘generation tagged’ due to the plethora of online posts and hashtags that connect to them. The digital footprint created by parents can and will show up in searches for decades, providing generations of viewers access to myriad personal data ranging from narratives to photos and videos (Gligorijevic 2019; Steinberg 2017). Many parents are unaware of the role they play in creating a digital footprint for their child (Prakash 2019), and their intent in sharing personal information is rarely malicious. However, the fact that countless people do not consider the effect on their child’s life, or even wonder if they should get the child’s permission or input before sharing (Steinberg 2017), is indicative of the lack of importance placed on a child’s right to privacy in society today (Gligorievoc 2019). Regardless of whether parents seek out their child’s opinion on what they are sharing about them publicly, children have been shown to have strong reactions when asked how they feel about their personal life being displayed online. In a survey study by Hiniker, Schoenebeck, and Kientz (2016) that researched parents’ and children’s perspective on family technology rules, child participants reported that they find the content of their parents’ posts embarrassing, and 18% do not want their parents sharing anything without their explicit consent. In addition, many feel frustrated that their mothers and fathers continually post personal information without asking permission and that parents do not respect their autonomy when sharing (Hiniker et al. 2016; Gligorijevic 2019). Most adults are aware of the danger to youngsters, especially teens, of destroying their digital identity by over-posting foolish, inappropriate, and revealing pictures and comments, but do the same fears apply to teens with a disability? The English Children’s Commissioner recommended compulsory digital literacy and online resilience lessons in school after a recent study identified numerous ways that social media was negatively affecting children’s well-being and self-esteem (Gligorijevic 2019). Numerous parents also report wanting to protect their child’s personal information from predators and other negative online exposures and list it as a reason for establishing rules about online behaviour (Hiniker et al. 2016). However, while much of the scholarly and popular discussion regarding digital presence centres on youngsters needing to control and monitor what they put online for fear of future 457

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repercussions of inappropriate posts, this focus is undermined when guardians are the ones creating the online profile for their child. To date, there has been little discussion of the damage done to a child with a disability’s identity by their parents’ online activities. Ironically, most parents and scholars agree that an online presence that is sometimes inappropriate or not age-appropriate can be potentially damaging to someone’s future regarding acceptance into educational programs or employment. It is common knowledge that countless college and employment recruiters investigate the online presence of their applicants (Penn State 2020; Tews, Stafford and Kudler 2019). Recently, there have been instances of people losing their jobs based solely on personal social media postings that are inappropriate, racist, homophobic, ableist, or overtly aggressive in nature (Halper 2015; Sun 2016). Despite this, while research indicates that innumerable parents worry how a child will view the posts made about them in the future, it does not seem to dissuade them from posting in general (C. S. Mott Children’s Hospital 2015). Sharenting is becoming a widespread practice of today’s parents. A University of Michigan study ‘noted that 56% of parents shared (potentially) embarrassing information about their children online . . . and 27% of participants shared (potentially) inappropriate photos’ (Steinberg 2017, p. 848). But when viewed within the negative social constructs surrounding disability, this can be much more damaging for a person with a disability. Carly Findlay (2015, no pagination), disabled since childhood, wrote, ‘I would be mortified if my parents shared my condition at length (and publicly) as a child or an adult . . . I am glad I can make the informed educated choice to tell my story my way.’

Children Without Rights What specific rights does a child have in relation to the sharing of their personal information? It turns out, it depends on the country. Courts in the UK ‘have acknowledged the paramount importance, in cases involving children’s interests, to protect children, to treat them with specific and special regard, and to consider their best interests as a priority in any decision made affecting their lives’ (Gligorijevic 2019, p. 10). The European Court of Human Rights considers the courts dutybound to uphold a child’s best interest in all cases involving a child’s right to privacy (Gligorijevic 2019). Articles 16 and 19 of the UN Convention on the Rights of the Child (CRC) address the issue of privacy and exploitation, and as stated earlier, many countries have adopted these articles as guidelines when ruling about a child’s right to privacy. While children do have the right to privacy in many countries, that is not the case for all. In the United States, for example, at the present time, a child has no authority over sharing the details of their lives, including their photographic images. That control is currently within the sole domain of their parents and their parents’ willingness and ability to self-sensor. Unlike other countries, in the United States court system, parent and family interests usually supersede the interests of the child. While there have been few cases that focused on the child’s right to privacy within the context of 458

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parents sharing personal information, the ruling in the case of child prodigy Sidis in Sidis v FR Pub. Corporation (1940), 113F. 2d 806, in the early 1900s is an important one that to this day influences the approach to child’s rights regarding publicly shared information. Sidis, a child prodigy who grew up in the public eye, wanted to escape from that role as an adult but was unable to according to United States law. This ruling led to the future understanding over 100 years later that a child whose digital footprint has been created either with or without their consent may be viewed as a public figure for the remainder of their lives, whether they choose to remain in the public eye or not (Steinberg 2017). United States privacy laws historically and currently tend to favour parental rights to free speech over the rights of the child, which contrasts with the right to forget or erase online information that is prominent in Europe and the United Kingdom (Prakash 2019; Steinberg 2017). With the lack of legal rulings related to instances of child privacy, it appears that United States family law experts are beginning to understand the need for evolving interfamilial rights for a child based on their age and understanding with regard to their autonomy in what is posted about them online (Steinberg 2017). However, since new rulings focus on the child’s developmental ability to object based on age and level of understanding, where does this leave the child with a disability, who may never fully gain the legal right to dissent, and those whose parents—the same people creating their less-than-flattering digital footprint—remain their legal decisionmakers throughout their lives? Although there are United States laws, such as the Children’s Online Privacy Protection Act (COPPA) of 1998 (Federal Trade Commission 2020), which regulates the way businesses gather information from a child online, ‘[c]ourts have shown reluctance to grant children privacy rights in the context of family life’ (Steinberg 2017, p. 856) based on the paternalistic view that parents will always have their child’s best interests at heart. This suggests an acceptance and understanding that parents are aware of their moral obligation to keep their child safe. However, it is doubtful whether this is a justified assumption. From a global perspective, there is significant evidence to the contrary. At this time, the United States is the only United Nations country that has not ratified the UN Convention on the Rights of the Child treaty (Mehta 2015). This 1989 agreement is ‘the world’s most comprehensive framework for the protection of children’s rights’ (Attiah 2014, n.p.). Countries from around the globe worked together to formulate guidelines focused on the best interest of the child in myriad areas, ensuring the protection, proper treatment, and care of children, and, most importantly, to take ‘appropriate measures to protect the child from all forms of . . . abuse . . . maltreatment or exploitation’ (CRC Article 19). It is in the area of exploitation that critics of disability sharenting are most concerned. By not ratifying the CRC, the United States has demonstrated that it does not recognise a child’s right to privacy over the parents’ right regarding online sharing (Keith and Steinberg 2017). Child advocates insist that, to the extent of their capacity, a child must be made aware of their rights and be actively included in decisions made about them (Youth Advocate Program International (YAPI) 2020) and that courts 459

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and legal scholars should, at the very least, ‘adjust their focus to the harms that informational privacy intrusions pose for children’ (Gligorijevic 2019, p. 30). In the case of online sharenting, parents do not seem to be aware or prepared to honour their child with a disability’s autonomy. In similar fashion, by not signing this agreement, the United States is making a clear statement that it is not ready or willing to face the ‘exceptionally bad way’ that its children are sometimes treated (American Civil Liberties Union (ACLU 2020). Like the example set by many countries in the world, the United States must join the global community in ratifying the United Nation’s child’s rights treaty and work towards safeguarding all children against exploitation, both deliberate and unintentional. Despite the limited legal protections in the United States, most situations involving parents and their child with a disability never go to court. In most cases, the responsibility to decide the right thing to do is upon the shoulders of mothers and fathers.

Recommendations Regardless of each country’s current laws, the obligation to decide the appropriate course of action when it comes to sharenting falls on all parents internationally. Since the internet knows no geographical bounds, with or without legal restrictions, each parent must face the consequences of their actions. In fact, it can be said that all parents who post face an ethical dilemma. ‘[R]epresenting their identities as parents inevitably makes public aspects of their children’s lives, introducing risks that they are, paradoxically, responsible for safeguarding against’ (Blum-Ross and Livingston 2017, p. 110). One solution to this difficult situation that is respectful to both parents and their child with a disability is found within the basic ethical guidelines for maintaining confidentiality. Confidentiality is defined as ‘[t]he practice of keeping harmful, shameful or embarrassing information within proper bounds’ (Doherty and Purtilo 2016, p. 207). Most professionals interacting with people who come to them seeking assistance are bound by this ethical principle. Its purpose is to (1) uphold dignity and to (2) guarantee justice. It is a conscious, moral choice that honours the responsibilities of the providers while sustaining the rights of the people being served. Parents utilising this principle can easily and dutifully continue to gain information and give and receive assistance by sharing their stories following a certain protocol. Simply by asking themselves a short series of questions, it is easy to determine what is appropriate to post: • • •

How much information must be disclosed to help my child or others? If I must disclose negative information, will the harm to my child be outweighed by the benefit? And how can that harm be kept at a minimum?

Parents can mindfully weigh their need to share and their desire to help others against their child’s right to privacy by asking, ‘Will the overall outcome of this be good for my child . . . or just for me?’ 460

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Another strategy that can be used to address this issue is to work towards ‘reform . . . in a manner similar to the public health model’ (Steinberg 2017, p. 877). As with advice about advocacy and gaining support, this model is driven by healthcare professionals, educators, human services organisations, and others taking the lead in educating parents in a variety of ways on the best means to share information about their child with a disability. Recommendations can be given individually during medical check-ups and therapy sessions and through public health social media campaigns like those targeting awareness in teens on the dangers of smoking and unsafe sexual activity (Howard 2018).

Conclusion It is clear that a global determination needs to be made between where parents’ rights to share end and their child’s right to privacy and well-being begins. While legal guidelines can help, they do not guarantee parents’ awareness of this issue, leading to the crucial query, ‘Whose story is it, anyway?’ The rather-unfortunate result of oftenenmeshed identities makes answering this simple question quite difficult. And what of the situations where a child is too disabled to tell their story their own way or not at all? Depending on a child’s ability to communicate, mothers and fathers may be their offspring’s only voice. In such cases, it is vitally important that it not be silenced (Farmer 2015). Indeed, an important consideration and not to be overlooked, but the key is in articulating that voice with authenticity: expressing truths with mindfulness, discretion, and grace. Currently, parents have disproportionate power over their child’s autonomy when it comes to online sharing. It is imperative that international awareness lead to appropriate ethical and legal boundaries being set regarding a child’s rights to privacy, especially as they mature. Until then, the best interests and well-being of the world’s youth are in jeopardy, especially when it comes to inappropriate sharenting. Though a common belief is that a parent’s love knows no bounds and it is true that placing judgement on the actions of others should not be taken lightly, we, as a global community, must never lose sight of the fact that ‘[t]he internet is forever’ (Findlay 2015, no pagination).

Sharenting Guidelines The ethical responsibilities of confidentiality that healthcare and human services professionals have honoured for years translate well to parents who want to share information about their child with a disability on the internet. Confidentiality is defined as ‘[t] he practice of keeping harmful, shameful or embarrassing information within proper bounds’ (Doherty and Purtilo 2016, p. 207). Most specialists interacting with people who come to them seeking assistance are bound by this ethical principle. Its purpose is to 1) uphold dignity and to 2) guarantee justice. It is a conscious, moral choice that honours the duties of the providers while sustaining the rights of the people being served.

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Parents utilising this principle can easily and dutifully continue to gain information and give and receive assistance by sharing their stories following a certain protocol. Simply by asking themselves a short series of questions, it is easy to determine what is appropriate to post: • • •

How much information must be disclosed to help my child or others? If I must disclose negative information, will the harm to my child be outweighed by the benefit? And how can that harm be kept at a minimum?

Parents can mindfully weigh their need to share and their desire to help others against their child’s right to privacy by asking, ‘will the overall outcome of this be good for my child . . . or just for me?’

References American Civil Liberties Union (ACLU). 2020. Children’s rights and the human rights program. [online] [Accessed on 1 April 2022] Available from www.aclu.org/other/childrensrights-and-human-rights-program#:~:text=The%20United%20States%20should%20 uphold,Convention%20on%20the%20Rights%20of Ammari, T., Morris, M. R. and Schoenebeck, S. Y. 2014. Accessing social support and overcoming judgment on social media among parents of children with special needs. In Proceedings of the eighth international AAA conference on weblogs and social media. [online] [Accessed on 9 July 2020] Available from: https://ojs.aaai.org/index.php/ICWSM/ article/view/14503 Attiah, K. 2014. Why won’t the US ratify the UN’s child rights treaty? The Washington Post. 21 November. [online] [Accessed on 18 September 2020] Available from: www. washingtonpost.com/blogs/post-partisan/wp/2014/11/21/why-wont-the-u-s-ratifythe-u-n-s-child-rights-treaty/ Autism Speaks. 2022. Information by topic: Family support. [online] [Accessed on April 2022] Available from: www.autismspeaks.org/information-topic#family Baum, L. S. 2004. Internet parent support groups for primary caregivers of a child with special health care needs. Paediatric Nursing 30(5), pp. 381–388, 401. Blum-Ross, A. and Livingstone, S. 2017. Sharenting: parent blogging and the boundaries of the digital self. Popular Communication 15(2), pp. 110–125. C. S. Mott Children’s Hospital. 2015. Parents on social media: Likes and dislikes of sharenting. Mott Poll Report 23(2). [Online] [Accessed on 4 August 2020] Available from: http:// mottnpch.org/reportssurveys/parents-social-media-likes-and-dislikessharenting Carey, A. C., Block, P. and Scotch, R. K. 2020. Allies and obstacles: Disability activism and parents of children with disabilities. Philadelphia: Temple University Press. Convention on the Rights of Persons with Disabilities and Optional Protocol. 2006. [online] [Accessed on 31 March 2022] Available from: www.un.org/disabilities/documents/convention/convoptprot-e.pdf. Convention on the Rights of the Child. 1989. [online] [Accessed on 9 December 2020] Available from: www.ohchr.org/en/professionalinterest/pages/crc.aspx. DeHoff, B. A., Staten, L. K., Rodgers, R. C. and Denne, S. C. 2016. The role of online social support in supporting and educating parents of young children with special health care needs in the United States: A scoping review. Journal of Medical Internet Research 18(12).

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‘Look at us . . . We’re Walking’ Doherty, R. and Purtilo, R. 2016. Ethical dimensions in the health professions. 6th edition. Missouri: Elsevier Health Sciences. Duggan, M., Lenhart, A., Lampe, C. and Ellison, N.B. 2015. Parents and Social Media. Mothers are especially likely to give and receive support on social media. [online] [Accessed on 9 July 2020] Available from: www.pewresearch.org/internet/2015/07/16/ parents-and-social-media/ Farmer, M. 2015. Our sharing is not shaming. From Motherhood. 29 July. [Online] [Accessed on 10 December 2020] Available from: www.frommotherhood.com/2015/07/our-sharing-isnot-shaming.html Federal Trade Commission. 2020. Children’s Online Privacy Protection Act (COPPA). [online] [Accessed on 3 November 2020] Available from: www.ftc.gov/enforcement/rules/ rulemaking-regulatory-reform-proceedings/children’s-online-privacy-protection-rule Findlay, C. 2015. When parents overshare their child’s disability. The Sydney Morning Herald. 24 July. [online] [Accessed on 3 December 2020] Available from: www.smh.com.au/lifestyle/ when-parents-overshare-their-childrens-disability-20150724-gijtw6.html Fleischmann, A. 2005. The hero’s story and autism: Grounded theory study of websites for parents of children with autism. Autism 9(3), pp. 299–316. Gligorijevic, J. 2019. Children’s privacy: the role of parental control and consent. Human Rights Law Review 19(2), pp. 201–229. Halper, K. 2015. A brief history of people getting fired for social media stupidity. Rolling Stone. [online] [Accessed on 1 April 2022] Available from: www.rollingstone.com/culture/culture-lists/a-brief-history-of-people-getting-fired-for-social-media-stupidity73456/ Hiniker, A., Schoenebeck, S. and Kientz, J. 2016. Not at the dinner table: Parent’s and children’s perspectives on family technology rules. CSCW ’16. Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing, pp. 1376–1389. Howard, A. 2018. 10 Effective public health social media campaigns. [online] [Accessed on 2 November 2020] Available from: https://strategicsocialmedialab.com/10-effectivepublic-health-social-media-campaigns/ Huws, J. C., Jones, R. S. and Ingledew, D. K. 2001. Parents of children with aitism using an email group: A grounded theory study. Journal of Health Psychology 6(5), pp. 569–584. Including Samuel. 2009. [Film]. Dan Habib. Dir. USA: New Hampshire Public Television. #Justice for LB. 2017. #Justice for LB: Pass it on please. [online][Accessed on 2 April 2022] Available from: http://justiceforlb.org/#blog Keith, B. E. and Steinberg, S. 2017. Parental sharing on the internet child privacy in the age of social media and the paediatrician’s role. JAMA Paediatrics 171(5), pp. 413–414. Kirk, S. and Milnes, L. 2015. An exploration of how young people and parents use online supports in the context of living with cystic fibrosis. Health Expectations 19, pp. 309–321. Lavoie, R. 2007. The motivation breakthrough: 6 secrets to turning on the tuned-out child. New York: Simon & Shuster. Lynnlovesdonuts. 2020. I can’t decide Sunday. [online] [Accessed on 9 December 2020] Available from: https://themighty.com/u/lynnlovesdonuts/. McGuire, A. 2016. War on autism: On the cultural logic of normative violence. Michigan: University of Michigan Press. Mehta, S. 2015. There’s only one country that hasn’t ratified the convention on children’s rights: US. ACLU: 100 Years. [online] [Accessed on 3 December 2020] Available from: www.aclu.org/blog/human-r ights/treaty-ratification/theres-only-one-countryhasnt-ratified-convention-childrens Morris M. 2014. Social networking site use by mothers of young children. In Proceedings of the 17th ACM Conference on Computer Supported Cooperative Work and Social Computing. Baltimore, pp. 1272–1282. [Online] [Accessed on 3 December 2020] Available from: http:// research.microsoft.com.proxy.library.stonybrook.edu/en-us/um/people/merrie/papers/ moms%5Fand%5Fsocial%5Fnetworks%5Fcscw2014.pdf

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Stephanie Patterson and Kathleen McGoldrick Nottingham, E. 2019. ‘Dad! Cut that part out!’ Children’s rights to privacy in the age of ‘generation tagged’: Sharenting, digital kidnapping and the child micro-celebrity’. In J. Jane Murray, B. B. Swadener and K. Smith (eds.), The Routledge international handbook of young children’s rights. Oxon: Routledge, pp. 183–191. Oswald, M., James, H. and Nottingham, E. 2016. The not-so-secret life of five-year-olds: Legal and ethical issues relating to disclosure of information and the depiction of children on broadcast and social media. Journal of Media Law 8(2), pp. 198–228. Parenting Special Needs Magazine. 2022. Parenting. [online] [Accessed on 1 April 2022] Available from: www.parentingspecialneeds.org/ Penn State. 2020. Social media content matters for job candidates. ScienceDaily. [online] [Accessed on 31 August 2021] Available from: www.sciencedaily.com/releases/2020/ 02/200205130339.htm Petal Blog. 2019. How much money does an Instagram influencer make? [online] [Accessed on 12 December 2020] Available from: www.petalcard.com/blog/money-instagraminfluencer-make Prakash, A. G. 2019. Parental role in creation and preservation of digital identity of children. Test Engineering and Management 81, pp. 4907–4911. Rader, R. 2015. Look at us, we’re walking. [online] [Accessed on 4 December 2020] Available from: www.eparent.com/editorial-2/look-at-us-were-walking/ Ryan, S. 2018. Justice for laughing boy. London and Philadelphia: Jessica Kingsley. Schilling, R. F., Gilchrist, L. D. and Schinke, S. P. 1984. Coping and social support in families of developmentally disabled children. Family Relations B, pp. 47–54. Sidis v FR Pub. Corporation. 1940.113F. 2d 806. [2d Cir.] Special Needs Jungle. 2020. Parent-led information, resources and informed opinion about children and young people 0–25. [online] [Accessed on 1 April 2022] Available from: www.specialneedsjungle.com Steinberg, S. 2017. Sharenting: children’s privacy in the age of social media. Levin College of Law, University of Florida, Emory Law Journal B(839), pp. 839–884. Sun, C. 2016. These social media fails got people fired. Entrepreneur. 18 March. [online] [Accessed on 21 September 2020] Available from: www.entrepreneur.com/article/271823 Tews, M. J., Stafford, K. and Kudler, E. P. 2019. The effects of negative content in social networking profiles on perceptions of employment suitability. International Journal of Selection and Assessment 28(1), p. 17. The Mighty. 2022. Disability. [online] [Accessed on 1 April 2022] Available from: https:// themighty.com/topic/disability/ Waltz, M. 2015. Mothers and autism: The evolution of a discourse of blame. American Medical Association Journal of Ethics 17(4), pp. 353–358. Youth Advocate Program International (YAPI). 2020. United Nations Convention on the Rights of the Child (CRC). [online] [Accessed on 21 September 2020] Available from: http://yapi. org/youth-wellbeing/united-nations-convention-on-the-rights-of-the-child-crc/

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26 AN OPEN EXPLORATION AROUND END-OF-LIFE JOURNEYS FOR CHILDREN FACING TERMINAL ILLNESS/ SEVERE DISABILITY Caroline Ellison, Clara Chapman Van Duivenbode, Fiona Buchanan, and Nicole Moulding Introduction Open discussions around end of life can cause discomfort in society, as end of life usually occurs in a social context. The social context impacts on the experiences of the dying person, family, friends, and health/human services professionals. Discomfort can be exacerbated if the individual experiencing end of life is a child living with disability (Duc, Herbert, and Heussler 2017). Children living with disability are often excluded from discussion around what is occurring and their potential to be facing end of life sooner than expected (Lindley, Colman and Meadows Jr 2017). Societies in many developed countries have cultivated an ingrained belief that we have to worship and prolong life at all costs by utilising medical advancements. Despite evidence around the importance of hospice for children with disability, not enough is known about end-of-life care for children, and the measures and processes used for adults are not always useful (Ananth et al. 2021; DeCourcey et al. 2018). What we know from the limited studies available is that individuals with disability are typically marginalised at end of life (Lindley et al. 2017). However, current person-centred approaches to health and social supports advocate that we should focus on the wishes of the individual. We need to acknowledge what the individual desires around managing illness and the end of life, their existing and future quality of life, and whether they feel their future wellness and abilities meet their aspirations and desired lifestyle. As professionals, we need to advocate for choice and an individual’s (child or adult) right to be informed and heard around their feelings about future treatments aimed DOI: 10.4324/9781003056737-35

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at prolonging their life, rather than meeting the needs of external factors, such as governmental laws and close personal relationships. Choices for adults at the end of life for those living with a terminal illness are largely being addressed in Europe, Australia, and the United States of America. Countries are changing the laws to reflect an individual’s right to choose an end-oflife journey if they no longer want to pursue life with their terminal condition and there is no chance of improvement and the individual is suffering unbearable pain. Each country’s laws contain their own unique provisions. These countries include Switzerland, Netherlands, Spain, Belgium, Luxembourg, Canada, Australia, USA, France, and New Zealand (Theweek.co.uk. 2021). Currently, not all these countries have outlined conditions around children facing a terminal illness suffering unnecessarily. Belgium outlines there is no age restriction for access to assisted suicide. The Netherlands also allows children to utilise assisted suicide, but they need parental consent if aged under 16 years. The current international changes to laws around choice at end of life are not enough. We need to encourage further legislative changes to enable children to have access to assisted suicide to help end unnecessary suffering where there are no chances of improvement available. These changes need to include outlining the current rights of children. This situation can be complicated, and there can be a lack of clarity around capacity for end-of-life decision-making if a child, or even an adult, is living with cognitive impairment or complex communication needs. It is important to acknowledge that children living with a disability, impairment, or serious illness have the same rights as other children. This is outlined in Article 7 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) (2006). This article states that ‘children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children’. Further to this, Article 12 of the United Nations Convention on the Rights of the Child (CRC) (1989) states that ‘[c] hildren have the right to say what they think should happen when adults are making decisions that affect them and to have their opinions taken into account’. Unfortunately, these rights hold no legal jurisdiction unless ratified into law. The UN encourages signed parties to uphold them. If these rights are upheld in our communities, it will help ensure no child is treated differently in any aspect of life due to illness, disability, or terminal condition. Further to this, if these articles are followed, it is hoped health and human services practitioners, families, and society will come to see that children, regardless of impairment, experience quality of life, death, and grief in similar ways. A study by Ólafsdóttir et al. (2019) found that children with physical disabilities experienced quality of life much like their non-disabled peers and, therefore, are likely to experience grief and death similarly. Further research from across the globe into how individuals living with disability experience grief, including studies by Ducy and Stough (2018) and McRitchie et al. (2014), found that individuals living with intellectual disability experience grief and loss like their peers. This demonstrates that children share experiences with death and grief in similar ways regardless of their physical or cognitive capacities. 466

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From this, it is possible to argue that those with a terminal illness will view deaths of others in a similar way to their peers and can use their experiences with others to help form their opinions around how they may feel about an individual end-of-life journey choice. Once an opinion has been formed, it is important that people feel comfortable sharing and expressing how they would like this to be reflected in their own health situation. Unfortunately, some individuals living with disability resulting in a terminal illness or a terminal illness alone can find it difficult to communicate their wishes clearly, as they do not have an established verbal or augmentative communication system, resulting in their wishes not always being addressed at end of life (Santoro and Bennett 2018). Cithambarm, Duffy, and Courtney (2021) reported that individuals living with intellectual disability in their qualitative study were able to engage in conversation around what would constitute a good end of life. To ensure adherence to the outlined right of Article 7 mentioned earlier, new systems need to be put into place to enable all children to have equal access to have their voices heard and avoid being excluded from end-of-life conversations. We argue that this could be achieved with the introduction of technological advancements and speech pathologists. Moreover, a child can be heard through an advocate. When a child is facing terminal illness, parents or primary caregivers may need to act as advocates in shared decision-making with health providers to ensure the network understands the importance and need for the child’s voice to be heard and acted upon (Santoro and Bennett 2018). This can be difficult if the parents’ desires conflict with the child’s. This is a difficulty shared by all parents with ill or disabled children, but this conflict and struggle is compounded when impending death is involved. Through this chapter, we explore the conflicts faced by children with terminal illness alongside families and healthcare providers.

The Rights of the Child When difficult, emotional, and complex health and social issues arise, there is often little discussion and focus on the rights of children. Other challenges and the management of medical issues tend to take most of the available physical and emotional energy. It is important that children, including children living with impairment, are aware of their rights, alongside their family, personal contacts, and local community. This awareness helps ensure children have access to the rights outlined by the UN, and parents and healthcare advocates can uphold these rights in the end-of-life journey. Health and human services practitioners need specific and ongoing professional development around the rights of children and how these intersect when the end of life is possibly sooner than expected or anticipated. Over 30 years ago, world leaders met and made a historic commitment by adopting the United Nations Convention on the Rights of the Child. This cemented ideals and guidelines children across the world should have access to regardless of personal or financial circumstances. This convention is the most widely ratified human rights treaty in history. 467

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The United Nations Convention on the Rights of the Child 1989 The 1989 United Nations Convention on the Rights of the Child (CRC) is an international convention that underpins ethical and human rights perspectives surrounding the support, care, and education of children. The CRC is based on the human rights principles of universality, indivisibility, and accountability that apply to all children, regardless of impairment, at all times, and in all locations. The ethos of the CRC ensures that children are not just objects who belong to their parents and for whom decisions are made, nor are they adults in training. Rather, according to the CRC, children are considered to be sentient human beings and individuals with their own rights. The convention has been ratified by all countries in the world, except the USA, and is therefore pertinent to all who work with children (Minasyan 2018). For children whose predicted life expectancy may not see them reach adulthood, we need to consider approaches to planning for and managing end of life whilst acknowledging how living with disability does not necessarily alter their human rights as defined in the CRC. Consideration needs to be given to how primary caregivers and health/human service providers uphold the rights of a child in such challenging contexts. Furthermore, as part of these considerations, we need to ensure the child’s own wishes are being acknowledged. The key rights of children facing end of life in the context of the CRC (1989) statement include the following: •

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Article 12 states parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child. Article 13 states the child shall have the right to freedom of expression; this right shall include freedom to seek, receive, and impart information and ideas of all kinds, regardless of frontiers, either orally, in writing, or in print, in the form of art, or through any other media of the child’s choice. Article 23 states parties recognise that a mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance, and facilitate the child’s active participation in the community.

United Nations Convention on the Rights of Persons with Disabilities 2006 (CRPD) The United Nations Convention on the Rights of Persons with Disabilities (CRPD) (2006) acknowledges in the preamble and subsequent articles a child’s right to autonomy, self-determination, and participation in decision-making. These principles are detailed in Articles 12, 13, and 23 shared earlier, highlighting how the world views of children with disability should not be treated differently to those without impairment. This puts forward an argument that children with a terminal illness should also 468

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be treated the same as those without and have the same right to access autonomy, self-determination, and participation in decision-making about their own lives. The CRPD (2006) states children with disabilities should have full enjoyment of all human rights and fundamental freedoms on an equal basis with other children and cites obligations to that end undertaken by states parties to the CRC. Autonomy, independence, and the freedom to make choices are outlined in Article 7: Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right.

The Trieste Charter Proposal Benini et al. (2014) The Trieste Charter Proposal was put forward by a team of medical experts aiming to safeguard the rights of children who are nearing the end of life. The charter aims to ensure that ‘every person caring for a dying child is capable of staying near to the child until the last moments of his/her life, prepared to accept and embrace his/her death, ensuring respect and dignity’ (Benini et al. 2014, p. 10). The proposal has been supported by the Maruzza Foundation, which aims to disseminate the culture of palliative care and promote research and training of healthcare professionals who work with patients with a life-limiting or life-threatening illness. The proposal outlines ten rights which should be adhered to as a child approaches their end of life, with corresponding duties attached to each right. Unfortunately, this charter has not been adopted on record, but we argue its ideas should be seriously addressed and recognised by health professionals, governments, family, and caregivers. The rights outlined are:   1. To be considered a person until death, irrespective of age, location, illness, and care setting.   2. To receive effective treatment for pain and physical and psychological symptoms causing suffering through qualified, comprehensive, and continuous care.   3. To be listened to and properly informed about his or her illness with consideration for his or her wishes, age, and ability to understand.   4. To participate, on the basis of his or her abilities, values, and wishes, in care choices about his or her life, illness, and death.   5. To express and, whenever possible, have his or her feelings, wishes, and expectations taken into account.   6. To have his or her cultural, spiritual, and religious beliefs respected and receive spiritual care and support in accordance with his or her wishes and choices.   7. To have a social and relational life suitable to his or her age, illness, and expectations.   8. To be surrounded by family members and loved ones who are adequately supported and protected from the burden of the child’s illness. 469

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  9. To be cared for in a setting appropriate for his or her age, needs, and wishes and that allows the proximity of the family. 10. To have access to child-specific palliative care programmes that avoid futile or excessively burdensome practices and therapeutic abandonment (Benini et al. 2014, p. 14). With children’s rights now outlined, we have a clear direction on what is expected and how children have rights to autonomy, self-determination, and participation in decision-making for choices regarding their lives. It is important we are aware and remember a child’s outlined rights and adhere to them when acting as an advocate for the child. This can be achieved by facilitating a safe place and a means of communication to discuss a child’s desires to ensure Articles 12 and 13 of the CRC (1989) alongside Article 7 of the CRPD (2006).

Facilitating Safe Spaces for End-of-Life Discussions With Children Facilitating safe spaces and ensuring children have a means of communication if verbal communication is not possible to discuss end of life are highly important. This is because, in an already-difficult time, we need to provide spaces which help alleviate any discomfort families may feel about discussing end-of-life options for terminally ill or disabled children, where there are no hopes of improvement with each other and healthcare providers. Unfortunately, it has been found that not all health/human services or disability support workers are skilled and educated about end of life, which means parents and caregivers can struggle to access support and information to feel confident engaging in end-of-life discussions with children and their families (Wiener et al. 2012). The study completed by Wiener et al. (2012) found support workers wanted to know: When do we tell them? How do we tell them? What do we tell them? This demonstrates support workers’ desire to learn the best way to engage in open exploration of end-of-life discussions with a child. The study by Wiener et al. (2012) found children with disability valued being told the truth by their support staff and families. This demonstrates truth is a great way to help facilitate a safe space for end-of-life discussions among families and providers with children. This is because the study by Wiener et al. (2012) shows children want to be able to understand their condition if they are seeking truth and be included in decisions about their health. Moreover, being told the truth enables people to feel they have ownership of their disability (Olkin 1997). Ownership means that the disability belongs to and is happening to the child (Olkin 1997). Being informed and able to own their end-of-life journey can also be considered vital to a ‘good death’ for children being aware of their situation not just around disability but also in relation to terminal illness and end of life. The illness and end-of-life journey belong to and are happening to the child, so they should have the same access to truths regarding this illness and autonomy and support to make decisions regarding their own health and body. Access to the truth should be given to the child in a tailored 470

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way which individually caters for their age and cognitive abilities. This truth can be told using pictures, stories, a communicative language, or by using concepts which are accessible to the individual child, and consideration should be given for their development, character, temperament, age, and maturity (Watson, Voss and Bloomer 2019). Before engaging the child in a conversation about end of life, it is recommended that parents, caregivers, and support staff take time to work through their own emotions. It is also recommended that they address any personal feelings, such as grief, fear, or helplessness; accept the circumstances which are unpredictable and out of their control; and lastly, work through their in-built tendencies to want to protect a child from harm, uncomfortable situations, and judgement. When family members and support staff have processed their own emotions enough to engage compassionately and rationally with the child about the prospect of end of life, an open discussion can be explored around the child’s desires. Below we outline seven considerations for engaging in a conversation with children regarding an end-of-life journey: • • • • • •

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Only provide medical information within the child’s capacity to understand. Avoid medical jargon. Do not talk down or objectify the child. Do not provide more information than is required to answer the question at hand. Provide information in small doses to not overwhelm the child. Remember to acknowledge that children have their own concerns around not wanting to be a burden or upset their parents, and this can limit their ability to voice their own desires. Allow the child to express their feelings to an independent third party if desired.

Complexities in End-of-Life Discussions With Children Children, including those living with impairments, facing an end-of-life journey bring many complexities to the forefront (Duc et al. 2017). First and foremost is a child’s right to express their views. Children being viewed as having an active role to play in their lives and to be supported to engage in decisions around their death, alongside a parent’s choice as their legal guardian, is crucial. Furthermore, children have the right to seek, receive, and impart information of all kinds, particularly in matters affecting them directly, and for these to be presented using communication methods, tools, and supports that are relevant and enhance their capacity to participate in decision-making. This is evident and reflected in the CRC (1989) in Articles 12 and 13 mentioned earlier. Moreover, it is also reflected in Article 7 of the CRPD (2006). The CRC (1989): Article 12 states parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child. 471

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Article 13 states the child shall have the right to freedom of expression; this right shall include freedom to seek, receive and impart information and ideas of all kinds, regardless of frontiers, either orally, in writing or in print, in the form of art, or through any other media of the child’s choice. The CRPD: Article 7 states parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and ageappropriate assistance to realize that right. Engaging children in decisions around their dying brings complexities for parents wanting to balance ensuring their child gets to live a full life with their friends and not worrying about heavy discussions around end of life, believing the knowledge that their life will be shorter than the life of some of their peers may result in depression and other concerns. Moreover, Olkin (1997) found that parents and caregivers tend to get stuck in the story they tell and assume the child already knows and understands their story and seeks no further information. However, evidence presented by Wiener et al. (2012) and Zadeh, Pao, and Wiener (2015) contradicts this and shows children seek information about their life-threatening illness. Wiener et al. (2012) and Zadeh et al. (2015) also found that children and young adolescents living with a life-threatening illness want to be able to choose and record: • • • • • • •

The kind of medical treatment they want and do not want How and where they would like to be cared for Information for their family and friends to know regarding their situation and themselves How they’d like to be remembered Who they’d like with them at end of life Who can help when they feel scared or alone Who can help with decision-making

The aforementioned information demonstrates why it is best to approach end-of-life discussions as an open exploration to gain knowledge and allow the child to understand what end of life appears to be, their concerns, and how they would like to be involved in the process. This means assisting the child to understand their situation, to develop their own views, express fears, beliefs, and feelings regarding end of life independent of those providing the information. Once a thorough understanding has been achieved of the child’s desires, parents and caregivers will then feel more comfortable acting as an advocate on behalf of their child in the health industry. Further to this, it could be considered that there are three key components which need to be considered in the end-of-life journey: understanding, reflection, and 472

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discussion. The component of understanding can be achieved by identifying the child’s personal goals, values, and beliefs as they relate to their quality of life (Zadeh et al. 2015). This is evident from the findings around how young adolescents feel by Zadeh et al. (2015), identifying that understanding a child’s wishes can be difficult if the child does not have a clearly established augmentative communication system, as mentioned earlier. To work through this, the government should uphold Article 23 of the CRC (1989): children who have any kind of disability should receive special care and support so they can live a full and independent life. An ‘independent life’ implies a child should be given access to technologies and staff that help communicate their wishes clearly to family and health professionals to uphold their autonomy and self-determination to take ownership and make decisions for themselves about their health circumstances. Moreover, to gain a thorough understanding of their condition, children should have the opportunity to be given a realistic view of others’ opinions regarding their impairment to help them reflect and come to form a decision they are comfortable to express. This is because, as individuals, we turn to friends and health professionals to help us form our opinions, and children should have the same opportunity for their own health circumstances. This should be undertaken in accordance with the child’s maturity and cognitive understanding of what information third parties are providing. Introducing third parties can also encourage families to share the hard truths with their children about their condition, which further enhances everyone’s understanding and ability to express their emotions around end of life. Once a thorough understanding has been achieved from both sides, support staff can work with families and health professionals to foster a coping model to help teach self-advocacy skills and work through emotions of the child family members and health professionals in safe, open discussions (Olkin 1997). The case study ‘A Mother’s Journey’ was captured during a conversation with Leanne (Mother). It illustrates how success can come from understanding, reflection, and discussion in a complex time where a child living with a primary disability receives a diagnosis and whose life outcome becomes unknown for several years. A Mother’s Journey is a reflection from a mother whose daughter lived with a complex cognitive and physical impairment from birth and then received an acute lymphoblastic leukaemia diagnosis at age 9. Her daughter underwent treatment for several years, where the outcome was unknown. Leanne (pseudonym) faced many complexities throughout her daughter’s journey, including what to share with her, how to inform her friends of her illness, consuming medical knowledge out of her depth, and more. From the complexities Leanne faced, she has provided suggestions to help when engaging in difficult conversations which can be applied to an end-of-life journey. Her first key tip is to not allow yourself to be saturated with information. She believes it is okay to say you’re overwhelmed and would like to return for more information later. When one is overwhelmed, one will not be able to absorb information clearly, whether one is the parent or child, limiting one’s knowledge of the illness. This can result in an inability for the child to receive information in a format that is 473

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understandable and using their preferred communication style in order to engage in decision-making, take ownership, and make decisions for themselves as much as possible. If you are the one communicating information from healthcare providers to your child about the illness, it is best to provide information in small doses to allow your child adequate time to consume what has been said and seek clarification if necessary to be able to understand in accordance with their age and maturity. Moreover, if you don’t know an answer, be confident to express this with your child, as it will help foster a safe environment where your child knows you are being honest with them and demonstrates you are listening to them and allowing them to be properly informed. Fostering this outlook allows you to uphold the articles of the UN conventions and adhere to the Trieste Charter (Benini et al. 2017. When providing the information, Leanne’s mother suggests that the delivery is tailored in accordance with the child’s maturity, emotional stability, and established communication style. However, they should not be made fearful of their circumstances. She suggests only answering the questions asked by the child and not providing more information than is necessary to ensure a child fully comprehends what has been placed before them. They do not need to be ambushed with details beyond their understanding. Furthermore, she believes that the most important point she has learned was to reiterate to her child that decisions about her future would not be made without her. She wanted her daughter to know she could have as much control as she wanted in decision-making. This shows the mother aligned with rights 3, 4, and 5 of the Trieste Charter proposal (Benini et al. 2014). It is clear from this case study that children have the right to be informed of their condition and be involved in the decision-making processes. This should be achieved by providing information to the child in a personalised way, by presenting the whole person and how their body is responding, not just the illness. This is a further complexity which needs to be addressed, as not all health/human services staff have the best training in understanding the intersection between terminal illness, impairments, and disability. The health and human services systems can present complexities in the end-oflife journey for children mainly due to inadequate professional development and, at times, complex service system boundaries. While the non-disabled population have benefitted from service development around end-of-life supports, individuals living with disability and their families have not benefitted equally (Goldsmith, Hendrix, and Gentry 2006). Sheetz and Bowman (2008) found that staff do not always have access to training to confidently and appropriately support family during difficult times, such as end of life. They also report that health/human service providers often feel thrust into situations and feel they are supposed to automatically know what to do and how to handle the situation without any guidance. Being unprepared to support end-of-life journeys with individuals is often associated with a willingness to provide end-of-life supports but feelings that they were inadequately prepared to meet expectations in terms of knowledge and capacity, and this often led to stress. End-of-life care decision-making was made more challenging when practitioners felt ‘pushed out’ by family (Ryan et al. 2011). This paucity in knowledge and practical understanding could be addressed more effectively via an internationally agreed 474

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approach. It requires further research and exploration. A lack of understanding and capacity around complex communication also exacerbates barriers when health/ human services professionals have limited knowledge of impairments, disability, facilitating communication, and the intersection with terminal illness. Ouellette (2006) found that there is a barrier in knowledge about people with disabilities in the healthcare sector. There is a lack of understanding around the quality of life people living with an impairment can have and that living with disability is not in itself tragic. Negative life experiences come from a lack of access and inclusion, not necessarily the impairment itself. Ouellette (2006) and Goldsmith et al. (2006) reported that healthcare professionals and doctors are significantly more negative around children living with impairment as they make negative assumptions about the child’s possible quality of life. Discrimination in the healthcare/human services systems could explain why there is a lack of understanding and conversations about choice-in-dying laws (FitzGerald and Hurst 2017). This lack of understanding demonstrates the importance of diversifying healthcare/human services to recruit and educate more doctors, nurses, and other human services practitioners living with disabilities (Ouellette 2006). If more health/human services staff living with impairments were employed in the healthcare/human services systems, it would reflect the diversity of the general population and represent people with disability more authentically in our healthcare/human services systems (Ouellette 2006). This reflection could provide families with the opportunity to feel more confident about children living with disability experiencing an end-of-life journey receiving inclusive, accessible, and equitable support and care, as all practitioners involved will have a better understanding of the quality of life the family may be currently experiencing and how to engage the child in a person-centred and self-determining manner. A study by Sheetz and Bowman (2008) regarding paediatric palliative care found that the proportion of doctors who rate their ability to provide palliative care as ‘confident’ or ‘very confident’ ranges from 74% for giving difficult news to families and 23% for managing end-of-life symptoms; 36% of the doctors say they would be ‘likely’ or ‘very likely’ to attend training to improve their ability to provide palliative care and end-of-life options to children (Sheetz and Bowman 2008). This demonstrates a desire for the health community to improve their ability to support an empowered end-of-life experience. Research shows that choice and control and an empowered dying process can facilitate the best death possible (Mallon 2021; Westwood 2021). Moreover, they will assist health/human services staff feeling unsure about how to contribute to, support, and facilitate end-of-life discussions to feel confident to further support families and the children themselves. Wiener et al. (2012) also note that health professionals worry that engaging in end-of-life discussions and planning may send the message that the health/human services team wishes to withdraw care and that death is imminent, reducing the hope a child or family may wish to maintain. Providing professional development based on research, evidence of positive practice, and using an international approach could provide an initial framework around alleviating discomfort for not only health/human services professionals but also the wider community. Whilst there is a long way to go in end-of-life discussions and 475

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research, particularly for children and adults living with disability, the community is embracing discussions and engaging in studies to develop evidence-based practice encompassing accessible and inclusive advanced care planning, palliative care, and end-of-life options. End-of-life (EOL) doulas are becoming more accessible, better educated, and more accepted internationally as a valuable end-of-life support working in collaboration with formal health services (Yoong, Goh, and Zhang 2022). EOL doulas can act as an informed companion, accompanying and being present with the dying individual and their family, holding conversational spaces about death and dying, and assisting those involved to express their emotional, practical, physical, or spiritual needs (Rawlings et al. 2019). EOL doulas are facilitative and generally not prescriptive, keeping the dying person and their significant others at the centre of the death experience (Mallon 2021; Murphy 2021). A collaborative approach between health/human services and alternatives, such as EOL doulas, in understanding the complexity of end of life for all people, including children living with disability, and recognition of a need for a flexible approach and more engagement in the whole process for all involved show there is an appetite to work together to remove the taboo status of dying.

Advanced Care Planning Zadeh et al. (2015) reported that adolescents and young people want to discuss endof-life issues with healthcare providers they trust and who have been honest with them from inception of their care. Though it is important that healthcare/human services providers meet the delicate balance of maintaining hope whilst promoting a meaningful discussion around end of life when death is imminent. This is because the decision still needs to be as much as possible focused on the wishes of the child. Duc et al. (2017, p. 1120) state that ‘all care planning should be child- and familycentred—aligned with the child’s best interests and child and family goals of care’. When approaching the advance care planning and end-of-life discussion, a tool such as the Advanced Care Planning Readiness Assessment Measure can be used in assisting in understanding whether the timing is right to begin the planning process. The Advanced Care Planning Readiness Assessment Measure provides an outline of yes/no questions to assist in determining advanced care plan actions (Zadeh et al. 2015). These topics include: 1. Whether talking about what would happen if treatments were no longer effective would be helpful. 2. Whether talking about medical care plans ahead of time would be upsetting 3. Whether the patient would be comfortable writing down/discussing what would happen if treatments were no longer effective (Zadeh et al. 2015) In terms of children with terminal illness and/or lifelong disability impacting their quality of life, the right and most appropriate time can be difficult to determine. If treatments are not conducive to the child having the quality of life they desire, they 476

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should have the opportunity to exercise their autonomy and to make the decision to continue down a treatment path or consider alternatives. Discussing medical care plans can be difficult ahead of time. This topic will really depend on the child’s maturity, cognitive ability, and emotional stability, but these plans can and should be tailored individually to make the situation less upsetting and facilitate further exploration as to how the child feels. For example, you can bring humour into the situation by addressing all the fun things they could do and bring up fun memories you could share prior to the end-of-life moment. As expressed by Zadeh et al. (2015), children want access to be able to discuss what will happen if treatment is not effective. This readiness plan allows for this discussion, increasing the child’s rights to autonomy and self-determination over their body. Wagemans et al. (2013) and Voss et al. (2020) found that end-of-life decisionmaking could be improved by ensuring clear roles within the support system for each individual from a patient representative view. Furthermore, Wagemans et al. (2013) outlined that success could be achieved when the roles were clearly defined and each individual had a description of what was expected of them to achieve the desired individual child’s goal. Clarity around the roles of the health and support system and how this links to the child’s expectations and wishes facilitates everyone feeling involved and acknowledged in the process, resulting in an overall positive outcome (Wagemans et al. 2013). Furthermore, discussion with all parties allows for a deeper understanding of each other’s individual motives and clarifies unidentified expectations. It should be noted that end-of-life discussions and advanced planning for the possibility of death is not about giving up hope (Lotz et al. 2017). They are actually life-affirming and can allow life to go on and for the specifics around the end of life to be ‘parked’ and returned to if and when needed. This gives a sense of transparency and predictability that, when the time comes, the foundations for openness and listening to the child’s wishes are there. Everyone will die and, from birth, is journeying towards end of life, and there is evidence that planning and preparation can help reduce stress during end of life and through the grieving process (Lotz et al. 2017). In his book Die wise: A manifesto for sanity and soul, Stephen Jenkinson (2015) describes death as an opportunity for us to learn and to understand that denying death is life-limiting, since the unknown and unpredictable can consume us and rob us of the opportunity to learn from the passing of others. Knowing you have supported and facilitated a loved one to have a passing with as much choice and attention to their rights as possible is linked to positive coping after someone has died. As difficult as having a child die is, how well an individual’s choice and control is facilitated throughout the process is linked to how well family and friends cope after death (Jenkinson 2015).

Conclusion The rights of children living with disability experiencing the end-of-life journey need to be facilitated, respected, and upheld. Children living with disability, like all children, need to feel supported and informed about their situation in order to 477

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participate in decision-making that best reflects their wishes. They need to be provided with accessible information and involved in decision-making in order to have the best death possible. While there is ongoing debate about the need for individuals living with disability to access mainstream rather than disability specialist services, there is evidence that individuals can benefit from having those with specialist capacity in teams providing end-of-life support (Forrester-Jones et al. 2017). Further research needs to be conducted to better understand how families in cooperation with health/human services staff and specific practitioners such as EOL doulas and other grief/death specialist professionals can break down professional boundaries and be open and flexible so as to assist children to understand, communicate, and uphold their right to choose how they want their end-of-life journey to be. Furthermore, a person-centred focus should be adopted where practitioners allow the child to plan in advance, choose, and record their desires for their family, friends, and advocates, as acknowledged by Wiener et al. (2012) and Zadeh et al. (2015). This can be further enhanced by ensuring health/human services practitioners have access to quality specialised learning around facilitating a good death for all, including the specific capacities around communication, and adapting resources need to engage in participatory end-of-life discussions with children living with disability. Advance care planning should be a key part of working with children regardless of disability, their families and other health and human services practitioners involved in the care and support of children with chronic life-threatening conditions. A family-centred approach, however, may present ethical dilemmas if the child and family members do not share the same understanding about the child’s health and longevity. There is potential for conflict where the child is still developing capacity for consent. Parents may exclude the child from advanced care planning and end of life discussions and expect others to accept their decisions without question. It may be difficult to separate the best interests of the child from those of their caregivers and extended family members. Tools and Resources that can assist families and children living with disability to come together include: The Royal Children’s Hospital Melbourne has discussions guides and resources https://www.rch.org.au/rch_palliative/for_health_professionals/Advance_ Care_Planning/ Queensland government resources https://metrosouth.health.qld.gov.au/acp/acpresources/for-children-and-young-people Advanced Care Planning Australia has some resources https://www.advancecareplanning.org.au/understand-advance-care-planning/advance-care-planning-inspecific-health-settings/advance-care-planning-and-disability eHospice is a newsletter with resources and strategies around supporting children at end of life. https://ehospice.com/usa_posts/disparities-and-inequities-inpediatric-palliative-hospice-care/

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A touching narrative from an End of Life Doula about guiding her daughter who lived with disability to end of life. https://ehospice.com/usa_posts/ changing-the-narrative-of-pediatric-death-and-dying/ Talking End of Life is a resource page for individuals with intellectual disability but the resources are adaptable and useful across the lifespan. https://www.caresearch.com.au/tel/tabid/4881/Default.aspx

References Ananth, P., Mun, S., Reffat, N., Li, R., Sedghi, T., Avery, M., Snaman, J., Gross, C. P., Ma, X. and Wolfe, J. 2021. A stakeholder-driven qualitative study to define high quality end-of-life care for children with cancer. Journal of Pain and Symptom Management 62(3), pp. 492–502. Benini, F., Vecchi, R., Lazzarin, P., Jankovic, M., Orsi, L., Manfredini, L., Drigo, P., Sellaroli, V., Gangemi, M., Spizzichino, M. and Orzalesi, M. 2014. The rights of the dying child and the duties of healthcare providers: The ‘Trieste Charter’. Tumori Journal 103(1), pp. 33–39. Cithambarm, K., Duffy, M. and Courtney, E. 2021. What constitutes good quality end-of-life care? Perspectives of people with intellectual disabilities and their families. Journal of Policy and Practice in Intellectual Disabilities 18(3), pp. 207–216. Convention on the Rights of Persons with Disabilities. 2006. [Online] 2515 UNTS 3, opened for signature 30 March 2007, entered into force 3 May 2008 [Accessed on 30 August 2021] Available from: www.un.org/development/desa/disabilities/convention-on-the-rights-ofpersons-with-disabilities/convention-on-the-rights-of-persons-with-disabilities-2.html Convention on the Rights of the Child. 1989. [Online] 1577 UNTS 3, opened for signature 20 November 1989, entered into force 2 September 1990 [Accessed on 30 August 2021] Available from: www.ohchr.org/en/professionalinterest/pages/crc.aspx DeCourcey, D. D., Silverman, M., Oladunjoye, A., Balkin, E. M. and Wolfe, J. 2018. Patterns of care at the end of life for children and young adults with life-threatening complex chronic conditions. The Journal of Pediatrics 193, pp. 196–203. Duc, J. K., Herbert, A. R. and Heussler, H. S. 2017. Paediatric palliative care and intellectual disability—A unique context. Journal of Applied Research in Intellectual Disabilities 30(6), pp. 1111–1124. Ducy, E. M. and Stough, L. M. 2018. Teacher perspectives on grief among children with intellectual disabilities. Journal of Loss & Trauma 23(2), pp. 159–175. FitzGerald, C. and Hurst, S. 2017. Implicit bias in healthcare professionals: A systematic review. BMC Medical Ethics 18(1), p. 19. https://doi.org/10.1186/s12910-017-0179-8 Forrester-Jones, R., Beecham, J. K., Barnoux, M., Oliver, D., Couch, E. and Bates, C. L. 2017. People with intellectual disabilities at the end of their lives: The case for specialist care? Journal of Applied Research in Intellectual Disabilities 30(6), pp.1138–1150. Goldsmith, B., Hendrix, C. C. and Gentry, J. 2006. Providing end-of-life palliative care for the developmentally disabled and their families. Journal of Hospice & Palliative Nursing 8(5), pp. 270–275. Jenkinson, S. 2015. Die wise: A manifesto for sanity and soul. California: North Atlantic Books. Lindley, L. C., Colman, M. B. and Meadows Jr, J. T. 2017. Children with intellectual disability and hospice utilization. Journal of Hospice & Palliative Nursing 19(1), pp. 28–33. Lotz, J. D., Daxer, M., Jox, R. J., Borasio, G. D. and Führer, M. 2017. ‘Hope for the best, prepare for the worst’: A qualitative interview study on parents’ needs and fears in pediatric advance care planning. Palliative Medicine 31(8), pp. 764–771. Mallon, A. 2021. Compassionate community structure and function: A standardised micromodel for end-of-life doulas and community members supporting those who wish to die at home. Palliative Care and Social Practice 15.

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Caroline Ellison et al. McRitchie, R., McKenzie, K., Quayle, E., Harlin, M. and Neumann, K. 2014. How adults with an intellectual disability experience bereavement and grief: A qualitative exploration. Death Studies 38(3), pp. 179–185. Minasyan, L. 2018. The United States has not ratified the UN Convention on the Rights of the Child. [Online] 30 September 2018 [Accessed on 30 October 2021] Available from: https://atlascorps. org/the-united-states-has-not-ratified-the-un-convention-on-the-rights-of-the-child/ Murphy, S. 2021. Being an end-of-life doula. British Journal of Community Nursing 26(7), pp. 334–337. Ólafsdóttir, L. B., Egilson, S. T., Árnadóttir, U. and Hardonk, S. C. 2019. Child and parent perspectives of life quality of children with physical impairments compared with nondisabled peers. Scandinavian Journal of Occupational Therapy 26(7), pp. 496–504. Olkin, R. 1997. The human rights of children with disabilities. Women & Therapy 20(2), pp. 29–42. Ouellette, A. R. 2006. Disability and the end of life. Oregon Law Review 85(123). Rawlings, D., Tieman, J., Miller-Lewis, L. and Swetenham, K. 2019. What role do Death Doulas play in end-of-life care? A systematic review. Health & Social Care in the Community 27(3), pp. e82–e94. Ryan, K., Guerin, S., Dodd, P. and McEvoy, J. 2011. End-of-life care for people with intellectual disabilities: Paid carer perspectives. Journal of Applied Research in Intellectual Disabilities 24(3), pp. 199–207. Santoro, J. D. and Bennett, M. 2018. Ethics of end of life decisions in pediatrics: A narrative review of the roles of caregivers, shared decision-making, and patient centered values. Behavioral Sciences 8(5), p. 42. Sheetz, M. J. and Bowman, M. A. S. 2008. Pediatric palliative care: An assessment of physicians’ confidence in skills, desire for training, and willingness to refer for end-of-life care. American Journal of Hospice & Palliative Medicine 25(2), pp. 100–105. Theweek.co.uk. 2021. The countries where euthanasia is legal. 22 September. [Online] [Accessed on 30 October 2021] Available from: www.theweek.co.uk/102978/ countries-where-euthanasia-is-legal Voss, H., Vogel, A., Wagemans, A. M. A., Francke, A. L., Metsemakers, J. F. M., Courtens, A. M. and de Veer, A. J. E. 2020. What is important for advance care planning in the palliative phase of people with intellectual disabilities? A multi-perspective interview study. Journal of Applied Research in Intellectual Disabilities 33(2), pp. 160–171. Wagemans, A. M. A., Van Schrojenstein Lantman-de Valk, H. M. J., Proot, I. M., Metsemakers, J., Tuffrey-Wijne, I. and Curfs, L. M. G. 2013. End-of-life decisions for people with intellectual disabilities, an interview study with patient representatives. Palliative Medicine 27(8), pp. 765–771. Watson, J., Voss, H. and Bloomer, M. J. 2019. Placing the preferences of people with profound intellectual and multiple disabilities at the center of end-of-life decision making through storytelling. Research and Practice for Persons with Severe Disabilities 44(4), pp. 267–279. Westwood, S. 2021. Embodiment, choice and control at the beginning and ending of life: Paradoxes and contradictions. A provocation. In S. Westwood (ed.), Regulating the end of life: Death rights. Abingdon: Routledge, pp. 219–236. Wiener, L., Zadeh, S., Battles, H., Baird, K., Ballard, E., Osherow, J. and Pao, M. 2012. Allowing adolescents and young adults to plan their end-of-life care. Pediatrics 130(5), pp. 897–905. Yoong, S. Q., Goh, H. S. and Zhang, H. 2022. Death doulas as supportive companions in endof-life care: A scoping review. Palliative Medicine 36(5), pp. 795–809. Zadeh, S., Pao, M. and Wiener, L. 2015. Opening end-of-life discussions: How to introduce Voicing My CHOiCES, an advance care planning guide for adolescents and young adults. Palliative & Supportive Care 13(3), pp. 591–599.

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Life Domains in Childhood

27 THE CHANGING LANDSCAPE OF INCLUSIVE EDUCATION A Shift towards Universal Design for Learning Frederic Fovet Setting the Context Legislative Frameworks Based on a Rights Approach The rights of children with disabilities within the classroom have traditionally been defined and defended from a legislative perspective in the Global North (Whitley and Hollweck 2020). Most of this legislation has emerged not just from a conceptual need to seek equity but as a reaction to the viscerally detrimental outcomes being observed in segregated education environments. Segregated schooling, which emerged during the era of industrialisation, has been shown to hinder adequate social capital development (Nygård and Behtoui 2020); it limits these students’ access to quality education, because so often the mechanisms of the Pygmalion syndrome are at play— there is a self-realisation dimension to teachers having low expectations from learners (Gündüzalp and Özan 2019); it stigmatises learners, affects their perception of self, and negatively impacts these learners’ ability to integrate successfully into society and employment (Verhaeghe, Van Der Bracht, and Van de Putte 2015). Importantly, too, ability grouping has negative impact on students who are schooled in the mainstream sector, because they are not exposed to the diversity normally present in society and are unprepared to navigate this diversity in later life (Sermier Dessemontet and Bless 2013; Tereshchenko et al. 2019). This is the important philosophical ethos developed in the Salamanca Statement which crystalises the notion that the classroom should be a microcosm for society in every way (UNESCO 1994). Significant pieces of legislation have appeared globally to address these risks and solidly ground classroom practices in inclusion: No Child Left Behind in the US (No Child Left Behind [NCLB] 2002), Every Child Matters initiative in the UK (Children Act 2004), and DOI: 10.4324/9781003056737-37

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the Canadian Charter of Rights and Freedoms (Canadian Charter 1982, s 6(2)(b)). The fundamental values behind these extensive pieces of legislation are equity and universal access. As a result, educational efforts and policies towards inclusion are often said to be based on a ‘Human Rights approach’ that seeks to offer children with disabilities equal access and opportunities (Byrne 2019).

Inherent Contradictions of the Rights Approach While beneficial for securing access to mainstreamed classrooms and offering parents legal recourse, it is striking that this ‘rights approach’ legislation remains rooted in a deficit model view of diversity (Gow, Mostert and Dreyer 2020). Ironically, indeed, the legislation that in most Global North countries secures access to inclusion also currently anchors classroom practices in a medical model of disability that perpetuates categorisation based on diagnoses (Slee 2019). The medical model takes an approach to disability that sees impairment as an exception rather than a given feature of the population (Bunbury 2019). As a result, interventions seek to rectify access issues after the fact, through a process of retrofitting. These interventions also see the person with disabilities as not ‘whole’ and lacking features normally associated with a traditional, able-bodied view of the individual (Owiny et al. 2019). Interventions, therefore, normally assume the individual needs to be ‘fixed’ in order to be able to fit into the environment as currently designed for the mainstream population (Kapp 2019). In practice, in the classroom, this means that rather than ensuring the classroom is inclusive, legislation ensures retrofitting is available to students (Brown 2016). Retrofitting can mean access to teaching assistants and specialised remedial staff in sessions that often take place outside the classroom itself (Breyer, Lederer, and GasteigerKlicpera 2021); this retrofitting also guarantees access to assistive technology (Atanga, Jones, and Krueger 2020), alternate formats for learning resources (Herzberg and Rosenblum 2014), and sometimes adapted outcomes and assessment (Hanreddy and Östlund 2020). None of these measures, however, guarantee inclusion in the classroom space. They simply guarantee access to measures which rectify the initial inequity created by non-inclusive design. More importantly, retrofitting is secured through a process of disclosure of impairment and diagnostic verification (Grigorenko et al. 2020). This is a process that is both intrusive and stigmatising. Stigmatisation of students with disabilities, either by teachers through the process of disclosure or by peers as a result of it, is such a concern that many children with disabilities prefer not to access accommodations (Mueller 2019). One of the issues with the accommodations approach is also that it tackles only a very limited dimension of inclusion within the classroom. There are many dimensions which justify the implementation of inclusive provisions in the classroom: development of social capital, recognition that segregated schooling impacts quality of instruction, and a desire to make the classroom a microcosm for society and therefore to see it be as diverse as the general population. None of these dimensions are effectively tackled in the classroom format if the legislative provisions focus solely on one dimension, and at present, the only objective is access to equitable remedies 484

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against discrimination (Hardy and Woodcock 2015). Mainstreamed classrooms can therefore fail children with disabilities with regards to all three perspectives listed prior, even when legal protections exist (Slee 2011). A further argument for the implementation of inclusion in school is the fact that cognitive processing and learning might be inherently diverse from a neuropsychology perspective. In order to address this cognitive diversity, teaching ought to be at the very least differentiated (Bondie, Dahnke and Zusho 2019). Differentiation is not currently mandated in any of the legislative models present in Global North countries (Lunsford 2017). The existing legal framework is also overly focused on narrow definitions of inclusion, centring mostly on impairment and disability. It leaves no room for the recognition of the needs of diverse learners who may feel excluded in schools because of ethnicity, race, culture, gender, or sexual identity, or socio-economic status (George, Maier and Robson 2020; Gordon and White 2014). Even in the case of students with disabilities, current legislation on inclusion in schools fails to acknowledge intersectionality (Bešić 2020). Intersectionality is the awareness that students who are oppressed and marginalised often experience this segregation on multiple levels, with regards to several aspects of their identities (García and Ortiz 2013). A child with disabilities may have access to specific protections under the legislative guidelines and access to basic retrofitting measures, but these provisions do not acknowledge intersectionality when this child is also marginalised or oppressed with regards to another dimension of their identity (Artiles, Dorn and Bal 2016; Stienstra and Nyerere 2016). The various points of tension discussed so far in this section have demonstrated a growing degree of concern from various actors in the field. While two decades of legislative provisions focused on inclusion ought, of course, to be celebrated, both public opinion and voices from the field are increasingly expressing concerns that the drive towards inclusion is failing (Barry 2016; Cooke 2017). There is currently a tangible lack of confidence among stakeholders (Ainscow 2020). Teachers feel ill-equipped and lacking resources in relation to professional development (Bemiller 2019); early-career teachers are also criticising the chronic lack of attention paid to inclusion within preservice teacher training (Metsala and Harkins 2020). School leaders still feel uneasy as to what represents effective leadership for inclusion (DeMatthews, Serafini, and Watson 2021). Parents, for their part, feel dismayed that oftentimes inclusion of children with disabilities represents a loss of specialised support services and no provision of authentic inclusive pedagogy (Page, Berman, and Serow 2020). Increasingly, the literature is compelled to make a distinction between inclusion and ‘mainstreaming’ (Gilmour 2021), mainstreaming being the regrouping of children of all ability in one physical classroom with no additional inclusive pedagogical provisions being offered (Haug 2016).

Emergence of UDL and Inherent Contradictions in Practices One theoretical model has appeared in the last two decades that is offering hope in providing solutions to the tension and contradictions discussed prior. The social model of disability has been discussed for four decades now and argues that 485

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disability is not an inherent characteristic of individuals but rather an interaction between individual embodiments and designed environments—a design which can either accommodate or disable (Traustadóttir 2009). The social model of disability has only now started entering the K–12 arena, principally through the introduction of universal design for learning (UDL) as an alternative format for inclusion. UDL is now developing rapidly within the K–12 landscape (Basham, Gardner and Smith 2020). The social model of disability in schools shifts away from a deficit model approach and instead situates disability in the friction, or lack of fit, between individual embodiments of learners and the design of the learning experience (Rees 2017). UDL, in this sense, translates the social model into classroom practices (Fovet 2014). It is radically different as a construction of disability, as it shifts the burden away from the child who is no longer labelled and stigmatised and on to the teacher as designer of the class environment or learning experience. As such, they must proactively cater through an inclusive design and mindset for the full diversity of the student population (Rao and Meo 2016). UDL is a framework which offers educators hands-on tools to implement the social model of disability in classroom practices and makes reflection about disability less theoretically daunting. A more detailed examination of the role of UDL in the classroom is highlighted in the boxed text section. While there is some debate in the literature as to whether constructing learning in these three dimensions might be overly simplistic, the three UDL principles are nevertheless effective and convenient lenses with which to break down the process of designing inclusively (Meyer, Rose, and Gordon 2014). Indeed, teachers have typically not been trained to take on the role of designers, and it is a mindset which is difficult for them to adopt with ease. Breaking the process into three angles makes this mindset more palatable to teachers and makes it less daunting. The application of these three principles does not yield prescriptive recommendations; they can be applied in any order, at different times, depending on what class activities are being examined. In this sense, the three UDL principles are a light, common-sense, user-friendly set of triggers for reflection that ensure a teacher has a structure to engage with a wider reflection on design. UDL is the only approach to inclusion in schools which moves firmly away from the medical model. It does so because it refuses to see exceptionality and variability as an issue but rather assumes it is a given and present in all classrooms. Instead of encouraging teachers to focus on retrofitting, the inclusive design mindset compels teachers to put the onus on their own role, as designers of the learning experience, to produce fully inclusive settings. The shift in mindset is radical and highly effective in the sense that there is then no longer a need for disclosure, for diagnostic information, or for labelling and stigmatisation. This offers refreshing solutions to the challenges listed earlier on in the chapter, but it is important to also realise that the shift in mindset and the adoption of UDL in schools are not seamless. They create a clash in practices with the legislative provisions which have not been updated over the last two decades, and with the case law which flows from these legal stipulations. The next section of the chapter describes this tension. 486

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Possible Clash between UDL and Inclusion Policies While UDL is increasingly appealing within the K–12 sector for the reasons detailed in the preceding text, it challenges decades of case law and cumulative best practices and can even be seen to clash explicitly with existing legislation on inclusion. This chapter has indeed described how most legislation related to inclusion in schools adopts a rights approach but also inherently secures these rights from a medical model perspective. UDL, therefore, while pushing the field beyond the deficit approach, clashes with the assumptions of the legislation. It will be argued here that it may even come to appear as not meeting the legislative goals—a situation which is so contradictory as to become absurd. This is a very tangible area of tension, one that will begin to create havoc in schools if it is not addressed by scholars, policymakers, and legislators. This chapter is therefore a call for action, one that advocates for the proactive resolution of this tension. The easiest way to showcase this tension is to provide vignettes that illustrate the theoretical clash. I use situations that have been extracted from my practice, particularly my lived experience as an instructor in a master program in educational leadership, supporting mid-career teachers, but also my experience as a consultant assisting school and school boards in implementing UDL. The vignettes do not represent a structured collection of data, per se; they are not the immediate product of qualitative methods of analysis. They are merely illustrations that are selected to trigger a reflection for the reader. There is nonetheless a loose phenomenological flavour to their formulation, as I have certainly been involved in a personal reflection in this context, analysing my meaning-making around my lived experience in this area. Phenomenology is a theoretical approach which seeks to explore meaning-making within the voice and lived experience of individuals who have close contact with a phenomenon they are attempting to process (van Manen 2014).

Vignette 1 A situation which is currently observed frequently in schools is a scenario whereby a teacher seeks to implement UDL and offers all learners measures that are normally only available to students who have a documented diagnosis. Oftentimes, this exploration begins for teachers with a reflection around assessment and an implementation of the ‘multiple means of action and expression’ UDL principle, with a view to offering more flexibility during evaluations. The most intuitive step within this reflection is often for the teacher to examine the issue of extra time and for them to design a way to offer this affordance to all learners if they need it, regardless of whether or not they have a disclosed and documented disability. This is a process which is usually very rewarding for teachers, as they see students with disabilities included, as a result, without stigmatisation, but also notice students who have specific needs, but no formal diagnosis, begin to rely on this provision. Learner outcomes improve as a result, and this is normally the necessary incentive for teachers to explore UDL further. Despite these positive outcomes and the ease that ensues, the process can quickly turn sour when a parent, 487

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a student, or an administrator challenges the process because they are insufficiently informed about UDL. Many stakeholders can indeed ironically identify the provision of extra time to all learners who wish to use it as the de facto withdrawal of specific, individual, legally mandated support services for students with disabilities. This can result in the absurd scenario, which I have observed in the field, where a parent or an administrator asks a teacher, who has incorporated extra time into the assessment for all learners, to add to this embedded time the extra time mandated by retrofitting policy. Not only is this an unmanageable outcome, but it also runs the very real risk of demotivating a teacher who may only just be embarking on an exploration of UDL.

Vignette 2 The second vignette relates to teachers who may be exploring the ‘multiple means of action and expression’ principle within the UDL framework. Another example of typical first steps in this reflection leads many teachers to explore the production of work and the participation in activities through alternative formats. Though UDL is not intrinsically linked to the use of technology in the classroom, technology is often the first go-to solution as educators venture into this area of reflection on practice. This does not necessarily involve the use of assistive technology, per se. Most everyday devices these days integrate a suite of accessibility features which turns all such devices into de facto assistive technology tools for the purposes of the classroom (Senjam 2021). Teachers will therefore usually shift their practices from assistive technology use to the wider development of awareness among learners of the accessibility features of everyday devices—such as the student’s phone, if the school has a bring-your-owndevice (BYOD) policy, or simply an iPad or laptop, if these are used in the school. Once all learners develop an awareness of the accessibility features on everyday devices used in the classroom (enlarged fonts, speech-to-text and text-to-speech, and spelling predictor features being the most popular of these features), it becomes logical and intuitive for the teacher to allow all learners to use these daily. Again, it is not rare for teachers, who go through this reflection and this process, to then receive requests from parents or administrators to provide specific assistive technology tools in the classroom simply because these are stipulated in the individual educational plan (IEP) (Blackwell and Rossetti 2014). Assistive technology is complex, costly, rarely user-friendly, and many teachers and students are resistant to its use (Atanga, Jones and Krueger 2020). Forcing these tools onto a classroom that already seamlessly integrates the embedded accessibility features of everyday devices creates absurd situations, confusion among stakeholders, and risks demotivating teachers as they begin this journey towards UDL implementation.

Vignette 3 The third vignette relates to the ‘multiple means of engagement’ principle of the UDL framework. As teachers explore this design lens, they are often led to seek out processes which create a more immediate and authentic affective connection between 488

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the class content and the lived experience of the learner. This process of reflection connects UDL as a pedagogical reflection to the wider objectives of critical pedagogy (CP). CP indeed taps into learning activities that support the identities of learners, amplifies their voice, and triggers a process of conscientisation around the inequities present in the educational setting (Katz 2014). This correlation between CP and inclusion is perhaps overly conceptual and difficult for teachers to grasp in the K–12 setting, as many lack exposure or formal introduction to the scholarship around CP. In terms of daily classroom practices, this alignment of UDL initiatives with CP is nevertheless often present and identifiable in the efforts teachers deploy when seeking to implement and integrate multiple means of engagement. In practice, teachers’ reflection around inclusion in the wider context of social justice has led to the emergence in the K–12 classroom of project-based learning (PDL), various forms of experiential learning practices, and more importantly, precedents for curriculum co-creation. Curriculum co-creation is perhaps the most radical of these pedagogical innovations, and I focus on this practice for the purpose of this vignette—it has a noticeable CP dimension and flavour in the sense that it seeks to radically alter the power dynamics in the classroom (Cook-Sather, Bovill and Felten 2014). Exploring and integrating curriculum co-creation into the classroom often seems daunting to teachers, who feel the degree to which it profoundly transforms traditional assumptions about control and power. Curriculum co-creation is also often the object of virulent criticism from school administration, who possibly see it as a danger to neoliberal accountability measures which prioritise the attainment of very specific outcomes (Doyle, Gastauer and Easton 2019). This pressure, in turn, is often presented to teachers by school leaders as an encouragement to ‘teach to the book’. This neoliberal framing of school priorities can badly shake the tentative efforts of teachers who are trying to explore UDL, and multiple means of engagement, through curriculum co-creation initiatives. These teachers are seeking to create inclusive provisions for all diverse learners but are often confronted with an institutional discourse which leads them to feel they are diverting from policy and legislation. This section of the chapter has evidenced, through a reflection on three vignettes, the very powerful ways teachers who experiment authentically with UDL can be made to feel that their efforts clash with the legislative provisions that frame inclusion in school. This is a counter-intuitive and frustrating outcome, since the chapter has demonstrated that UDL, in fact, takes inclusion one step further than existing legislative protections do. Beyond being illogical and difficult to process, this state of affairs has the immediate impact of weakening the determination of teachers who are boldly exploring the integration of UDL—and the social model of disability—in the class.

Looking Ahead: Reframing Inclusion in a UDL Landscape It is therefore urgently necessary to create clarity where currently tension grows between UDL objectives and field practices and to reframe inclusion in the classroom in ways that reflect the global shift to social model practices that is demanded and 489

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expected by the disabled people’s movement. This clarity is needed in relation to teacher training, school leadership, and communication with parents and students. The last section of this chapter examines and analyses the repercussion of the urgent need for change which has been highlighted thus far in the K–12 sector. Before these changes can take place, however, it is argued that a reframing of legislative provisions will need to occur. Legislative provisions, as discussed earlier, are grounded in a rights approach to inclusion. While this approach is noble in name and intention, the chapter has showcased how it, in fact, integrates and perpetuates medical model practices and stances. The legislative approach, indeed, affirms the need for equity and individual rights of children with disabilities, but it does so by highlighting exceptionality and therefore has the result of labelling and stigmatising. It ostracises these students within schools rather than allowing them to blend in and access social opportunities unhindered. There is, of course, no argument being put forward here for the elimination of these legislative provisions, as they have historically proven to be essential safeguards that ultimately challenge and limit discrimination. It is, however, important to note that legislative provisions for inclusion should not be seen as proactive inclusive objectives. They are instead, in format, structure, and flavour, mere reactive safeguards. They define what should not be—in matters of inclusion—but not what should be. This is a dangerous shortcoming because teachers, in practice, tend to see legislative requirements—mostly as they are integrated in the IEP—as the objective to reach, not as a safety net that should never be breached. If one returns to vignette 1 and the issue of extra time in assessment, for example, it is clear that teachers end up seeing the provision of extra time to students with documented diagnoses as the legislative benchmark instead of considering more widely how assessment practices should be transformed to address the needs of all diverse learners. Legislative provisions related to inclusion should ideally eventually include not just basic safeguards but also explicit, wider, bolder, systemic objectives that will, in fact, begin to transform K–12 pedagogy so it may successfully address the needs of diverse learners. This should take the form of supplementary legislative texts that do not substitute themselves to basic existing protections but instead complement these with objectives that are far more explicit and substantive. There is indeed an argument to assert from a sociological perspective that schools are institutions which resist change, unless they are compelled to embrace it (Beycioglu and Kondakci 2020). The only effective way to compel these institutions to engage with a process of management of change is to embed these requirements—such as the adoption of UDL practices and, more widely, whole-class approaches to inclusive pedagogy—in legislation. The fact that management of change in schools is often hindered unless forced by detailed statutory provisions has been proven in the last decades both in terms of changes successfully completed (equitable access to first-language instruction in bilingual jurisdictions (Dube 2008), protection of freedom of faith but also securing of the principles of secular education, rights of Roma children in certain European countries, protection of sexual and gender identities, elimination of corporal punishment, etc.) and those which have failed (integration of technology (Chand, Deshmukh, 490

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and Shukla 2020), Truth and Reconciliation objectives in Canada (OECD 2018), adequate responses to cultural diversity, etc.). There is, of course, an argument that perhaps these more-nuanced and sophisticated legislative objectives can be generated by case law rather than by the development of further legislative tools. There is no doubt that case law has gone some way, in various jurisdictions, to fill the gaps and to formulate more detailed guidelines as to what authentic inclusion might look like in K–12 classrooms. An illustration of this would be, for example, be Moore v. British Columbia (Education) (2012), which in Canada clarified the duties of schools in matters of inclusion and restricted their abilities to claim the exemption of undue hardship, which is otherwise frequently used by educational institutions to limit their duty to create inclusive environments on the basis that it creates significant financial resource constraints. This argument is fair, but one must also acknowledge that the very process of case law generation is rarely triggered since it requires an appeal to the highest court of the jurisdiction. It is a mechanism rarely available to parents without lobby funding and support; the time frame is also extremely slow and long. More importantly, it is crucial to note that even when case law is generated by the highest court in the land, there is no systematic mechanism to create awareness about this case law at school board or school level. It would be fair to say, for example, that, ten years on, Moore v. British Columbia (Education) (2012) is still not understood or even discussed by schools and teachers. Case law is useful to scholars and jurists, but it is asserted by this chapter that the principles formulated in this case law do not cascade down to field practitioners. Nothing short of legislative directives will be effective in this respect.

Repercussions for the Field Repercussions on Teacher Training The need to erode the tension that currently exists between inclusion policies and best practices in relation to UDL has immediate impact, in the field, on future professional development (PD) for teachers, both in terms of pre-service teacher training and in-service teacher PD (Cumming, Tones, Day and Heck 2018). There are clearly instances, in both these PD opportunities, where teachers are being advised to default back to what are essentially only basic legal provisions for inclusion: offering retrofitting measures and abiding by standard accommodations as they are formulated and perpetuated by administrative policies. It is important for both pre-service teacher training and PD for in-service teachers to begin proactively addressing the dichotomy and tension between UDL and legislation, because it leaves many of them confused and concerned. Many teachers are indeed aware of the legislative burden which bears on them to provide legally mandated measures as listed in the IEPs. They will grow fearful of becoming the target of litigation if it is not made clear to them that retrofitting is, in fact, a safeguard in the approach to inclusion but not the goal per se. The fear of being personally named in proceedings is very real. In Canada, for example, the educator is 491

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named, alongside the institution, when a human rights complaint is lodged in relation to an infringement of the Canadian Charter of Rights and Freedoms. It must be explicitly stated in teacher training, in all its form, that the key objective of inclusive measures is the proactive implementation of whole-class inclusively designed practices. This approach requires a significant shift in mindset as the brunt of academic training for teachers currently focuses on, and emphasises, medical model approaches. Training around inclusion currently still very much hones in on the minimum legal requirements necessary to avoid discrimination in the classroom (Johnson 2020). There is overemphasis on diagnostic documentation, something which often even slides into the unnecessary and counterproductive exploration and showcasing of clinical information (Gilor and Katz 2019). It leads, in many cases, to the unfortunate perception that one must be a clinical expert in order to create inclusive provisions in the classroom (Moriña and Carnerero 2020). Similarly, training around the IEP is increasingly grounded in a deficit model approach which prioritises individual remediation and diagnostic interventions over whole-class inclusive practices. The IEP, in fact, is not inherently grounded in the medical model approach; it emerged from the No Child Left Behind legislation and historically was proposed as a holistic social model instrument which was meant to examine in lay terms the barriers experienced by learners in the ‘here and now’ (Blackwell and Rossetti 2014).

Involving Students as Stakeholders While UDL approaches to inclusion in the classroom benefit all students, it would be naïve to assert that they are always implemented in schools without tension being felt by students. If a student has had access to legally mandated accommodations for a long period of time and suddenly faces a classroom where UDL is being systematically implemented, they may well feel that they are being deprived of essential personalised support services. This is likely to lead to the possible complaints and demands described in the vignettes earlier. If UDL is introduced in schools without explicit messaging targeted at students as stakeholders, they are, in all probability, going to perceive this process more as a loss of support than as a gain. It is also necessary to consider that, since learners are generally used to didactic, directive, teacher-centric classroom practices, any shift towards student-centred practices, a constructivist ethos, or active learning approaches will be perceived by students at first as unusual, challenging, and requiring more effort and commitment than a passive role in the classroom (Blignaut 2014). The same is true of UDL implementation; while it seeks to create expert learners, UDL can initially create a pushback among students because it represents a process that offers more autonomy and choice and can seem daunting. In my own practice, I refer to this as ‘transitional friction’. Transitional friction must be addressed proactively through effective communication with students. Considerable time is required before students become accustomed to UDL practices and come to realise these are more effective and less stigmatising than traditional retrofitting approaches. 492

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Unfortunately, there are currently no efforts to include students as stakeholders within the initiatives which are deployed to implement UDL. This is a regrettable observation which will become an inherent challenge in any effort to widen the UDL momentum across schools. This resistance is linked to a wider reticence in the K–12 sector to give room to the student voice. Critical pedagogy has long argued that the ‘banking model’ (Freire 1972) is concerned more with perpetuating hierarchical, authoritative power dynamics that require compliance than with developing authentic critical thinkers who challenge traditional learning environments (Gonzalez, Hernandez-Saca and Artiles 2017). This resistance is not just an abstract notion; it can be noticed in the challenges experienced in school with curriculum co-creation, for example (Bron and Veugelers 2014). UDL implementation requires not just the involvement of students as stakeholders but also a willingness on the part of teachers to be curious about student perceptions (Charteris and Smardon 2019). It necessarily involves the use of ethnographic processes to give students, as stakeholders, a voice in the transformation of pedagogy (Waitoller and King Thorius 2016).

Parents and Community Awareness Development Around UDL Parents are also often ignored in the UDL implementation process. Just as is the case for students, parents are likely to misinterpret UDL implementation efforts as the de facto loss of individualised support services. As a result, they will probably position themselves against UDL for lack of awareness. It is important to note that policy has been, over the last two decades, to encourage parents to demand services for their children if they have disabilities. They have been made to understand that, in a neoliberal climate of limited resources, an inherent role for parents of children with disabilities is to articulate needs, monitor the provision of services, and not hesitate to use legislation to obtain the legally mandated services that should be available to their children (Wright and Taylor 2014). It is quite understandable, therefore, that, for some of these parents, the role of advocate has become second nature. When confronted with UDL implementation efforts, they will therefore default back to habits they have come to internalise. It is notable that, while the literature has argued for a view of parents and community as partners for three decades (Tett and Macleod 2020), there has been no systematic or effective effort to include parents and communities in UDL efforts. This must change urgently if parents and community are to understand that existing legislative measures for inclusion represent a bare minimum safeguard and that UDL must now extend the inclusion ethos beyond deficit model practices (Authentic Parent Voice, n.d.).

Policies School Board Level Not only should legislative provisions in relation to inclusion be reframed, but it is also important for policies at school board level to evolve. It cannot be assumed that just because legislation changes, so will internal policies. The chapter has illustrated that case law, which refines some of the raw legislative provisions for inclusion and 493

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offers a degree of nuance and sophistication in the detail of what should constitute inclusive practices, is currently entirely ignored by schools. There is, first of all, a lack of capacity at school board level when it comes to the legal interpretation of precedents and the assessment of their impact on practices. Second, it is clear to school boards that even if the case law indicates the need for change, it is easier for them to opt for the status quo, considering the time and resources required for a parent to mount a legal challenge and escalate appeals to a superior court. Third, there is currently a process at play within school boards whereby a just-in-time assessment of costs occurs, and administrators often opt for out-of-court settlements instead of considering profound change to practices. Legislative reform, therefore, does not suffice, and management of change in this area requires a deep shift in mindset within school boards. Policy at this level is often out of line with legislative intentions, and there are mechanisms of resistance to change at play that are driven by neoliberal pressures (Hursh 2016). Pedagogical transformation, in particular, weighs far less in the balance than cost-effectiveness, perceived efficiency, and competitiveness (Scott and Holme 2016). Change towards more inclusive pedagogy within this business model is seen as inherently costly, and policy seeks to maintain the status quo. The cost of addressing sporadic legal challenges to policy as they occur is seen as less onerous than tackling wider organisational change. The authentic implementation of UDL will eventually require the deployment of leadership strategies that address the mechanisms that perpetuate resistance to authentic whole-class inclusion. Another way in which the neoliberal flavour which dominates the K–12 landscape affects UDL implementation globally is the fact that school boards are anchored in a funding model that aligns with the medical model (Pijl 2014). School leaders are increasingly framing decisions on the basis of productivity and cost-effectiveness. Identifying individual needs and prioritising diagnostic screening at present is the most effective way for them to secure funding envelopes within a very competitive landscape (Smith and Douglas 2014).

Conclusion This chapter has examined the way current legislative provisions in schools in relation to inclusion have the ambivalent effect of both promoting a rights approach and perpetuating medical model practices. It has highlighted how these legislative provisions challenge current efforts to implement UDL in schools. UDL, indeed, translates the social model of disability into classroom practice in the sense that it shifts the focus away from the exceptionality of the learner onto the role of the educator as designer. The way UDL promotes and encourages multiple pathways for all learners can, however, be perceived as clashing with the legal imperative to provide remedial interventions that seek to offer retrofitting. This is a very tangible tension, not just an abstract or academic assumption, and it can be observed, in the field, in the daily choices teachers make between adhering to the very basic requirements of IEPs and exploring a wider, inclusive design mindset. This chapter has demonstrated the need to reframe and refine existing legislation so that it continues to provide basic 494

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safeguards against discrimination but also promotes a more authentic adhesion to whole-class, design-focused solutions such as UDL. The chapter has also highlighted the numerous repercussions this reflection has for students, parents, and communities, as well as school boards and school leaders.

UDL in the K-12 Classroom UDL offers educators a lens with which to examine their classroom practices and to redesign them with diversity in mind (Rao, Ok and Bryant 2014). It is a radically innovative lens in the field of inclusion as it shifts away boldly from a deficit or medical model. UDL encourages the teacher to return to the blueprint and to consider what assumptions may create barriers for learners. Early UDL theorists have argued that learning can be viewed as having three essential dimensions: learner input (the way information is provided to students), learner output (the way students produce content and produce information), and learner engagement (the affective connection of learners) (Brand and Dalton 2012). In order to make learning as inclusive as possible, teachers are encouraged to consider injecting as much flexibility as possible within each of these dimensions of learning. This design reflection, carried out from three angles, has led to the formulation of three principles that correspond to these three dimensions of the learning process: multiple means of representation, multiple means of action and expression, and multiple means of engagement (Al-Azxawei, Serenelli and Lundqvist 2016). References Al-Azawei, A., Serenelli, F. and Lundqvist, K. 2016. Universal Design for Learning (UDL): A Content Analysis of Peer-Reviewed Journal Papers from 2012 to 2015. Journal of the Scholarship of Teaching and Learning, 16, 39–56. Brand, S.T. and Dalton, E.M. 2012. Universal Design for Learning: Cognitive Theory into Practice for Facilitating Comprehension in Early Literacy. Forum on Public Policy Online, 1, 1–19. Rao, K., Ok, M. W. and Bryant, B. R. 2014. A review of research on universal design educational models. Remedial and Special Education, 35(3), 153–166. Virtual Resources Alberta Education. 2018. Making sense of universal design for learning. [Video] YouTube. https://www.youtube.com/watch?v=PQSAQdxnQBY CAST. 2022. The UDL Guidelines. https://udlguidelines.cast.org/ Ralph, M. 2021. How Universal Design for Learning Can Help With Lesson Planning This Year. Edutopia. March  29. https://www.edutopia.org/article/ how-universal-design-learning-can-help-lesson-planning-year

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UNB. 2014. Universal design for learning action research. University of New Brunswick New Brunswick, Department of Education & Early Childhood Development. https://www2.gnb.ca/content/dam/gnb/Departments/ed/pdf/UDLActionResearch.pdf

References Ainscow, M. 2020. Promoting inclusion and equity in education: Lessons from international experiences. Nordic Journal of Studies in Educational Policy 6(1), pp. 7–16. Artiles, A. J., Dorn, S. and Bal, A. 2016. Objects of protection, enduring nodes of difference: Disability intersections with ‘other’ differences, 1916 to 2016. Review of Research in Education 40(1), pp. 777–820. Atanga, C., Jones, B. and Krueger, L. 2020. Teachers of students with learning disabilities: Assistive technology knowledge, perceptions, interests, and barriers’. Journal of Special Education Technology 35(4), pp. 236–248. Authentic Parent Voice. n.d. UDL and parent engagement. [online] [Accessed on 9 March 2021] Available from: www.authenticparentvoice.com/journal/2019/10/29/udl-and-parentengagement Barry, G. 2016. Inclusive education the top concern of N. L. Teachers, report says. CBC. [online] 27 September 2016 [Accessed on 9 March 2021] Available from: www.cbc.ca/news/canada/newfoundland-labrador/inclusive-education-concernsnewfoundland-labrador-panel-report-1.3781545 Basham, J. D., Gardner, J. E. and Smith, S. J. 2020. Measuring the implementation of UDL in classrooms and schools: Initial field test results. Remedial and Special Education 41(4), 231–243. https://doi.org/10.1177/0741932520908015 Bemiller, M. 2019. Inclusion for all? An exploration of teacher’s reflections on inclusion in two elementary schools. Journal of Applied Social Science 13(1), pp. 74–88. https://doi. org/10.1177/1936724419826254 Bešić, E. 2020. Intersectionality: A pathway towards inclusive education? Prospects 49, pp. 111–122. Beycioglu, K. and Kondakci, Y. 2020. Organizational change in schools. ECNU Review of Education. [online] [Accessed on 9 March 2021] Available from: https://journals.sagepub. com/doi/full/10.1177/2096531120932177 Blackwell, W. H. and Rossetti, Z. S. 2014. The development of individualized education programs: Where have we been and where should we go now? SAGE Open. [online] [Accessed on 9 March 2021] Available from: https://journals.sagepub.com/ doi/10.1177/2158244014530411 Blignaut, S. 2014. Reflections on student resistance to a constructivist curriculum. Education as Change 18(2), pp. 271–283. Bondie, R. S., Dahnke, C. and Zusho, A. 2019. How does changing ‘one-size-fits-all’ to differentiated instruction affect teaching? Review of Research in Education 43(1), pp. 336–362. Breyer, C., Lederer, J. and Gasteiger-Klicpera, B. 2021. Learning and support assistants in inclusive education: A transnational analysis of assistance services in Europe. European Journal of Special Needs Education 36(3), pp. 344–357. Bron, J. and Veugelers, W. 2014. Why we need to involve our students in curriculum design: Five arguments for student voice. Curriculum and Teaching Dialogue 16(1), pp. 125–159. Brown, E. 2016. Disability awareness: The fight for accessibility. Nature 532(7597), pp. 137–139. Bunbury, S. 2019. Unconscious bias and the medical model: How the social model may hold the key to transformative thinking about disability discrimination. International Journal of Discrimination and the Law 19(1), pp. 26–47.

496

The Changing Landscape of Inclusive Education Byrne, B. 2019. How inclusive is the right to inclusive education? An assessment of the UN convention on the rights of persons with disabilities’ concluding observations. International Journal of Inclusive Education 26(3), pp. 301–318. Canadian Charter of Rights and Freedoms, s 7, Part 1 of the Constitution Act, 1982, being Schedule B to the Canada Act 1982 (UK), 1982, c 11. Chand, V. S., Deshmukh, K. S. and Shukla, A. 2020. Why does technology integration fail? Teacher beliefs and content developer assumptions in an Indian initiative. Education Technology Research Development 68(5), pp. 2753–2774. Charteris, J. and Smardon, D. 2019. The politics of student voice: Unravelling the multiple discourses articulated in schools. Cambridge Journal of Education 49(1), pp. 93–110. Children Act 2004, c. 31. [online] [Accessed on 7 March 2021] Available from: www.legislation.gov.uk/ukpga/2004/31/contents Cook-Sather, A., Bovill, C. and Felten, P. 2014. Engaging students as partners in learning and teaching. San Francisco: Jossey Bass. Cooke, R. 2017 Nowhere to turn’: Teachers left alone to deal with special needs, fed up with system’. CBC. [online] 6 February 2017. [Accessed on 9 March 2021] Available from: www.cbc.ca/news/canada/newfoundland-labrador/inside-the-classroom-inclusiveeducation-not-working-1.3938053 Cumming, J., Tones, M., Day, C. and Heck, E. 2018. Enhancing inclusive education through teacher education reforms. In C. Wyatt-Smith and L. Adie (eds.), Innovation and accountability in teacher education. Singapore: Springer, pp. 201–221 DeMatthews, D. E., Serafini, A. and Watson, T. N. 2021. Leading inclusive schools: Principal perceptions, practices, and challenges to meaningful change. Educational Administration Quarterly 57(1), pp. 3–48. Doyle, M., Gastauer, C. and Easton, S. 2019. Transforming high school by co-creating learning experiences with students. Education Week. [online] 13 March 2019 [Accessed on 9 March 2021] Available from: www.edweek.org/leadership/opinion-transforming-high-schoolby-co-creating-learning-experiences-with-students/2019/03 Dube, N. 2008. Minority language rights in Canada. The Charter, Minority Language Education Rights (Section 23) (Center for Constitutional Studies). [online] [Accessed on 9 March 2021] Available from: https://ualawccstest.srv.ualberta.ca/2008/08/minority-languagerights-in-canada/ Fovet, F. 2014. Social model as catalyst for innovation in design and pedagogical change. Widening Participation through Curriculum Open University 2014 Conference Proceedings, pp. 135–139. Milton Keynes: Open University. Freire, P. 1972. Pedagogy of the oppressed. New York: Herder and Herder. García, S. B. and Ortiz, A. A. 2013. Intersectionality as a framework for transformative research in special education. Multiple Voices for Ethnically Diverse Exceptional Learners 13(2), pp. 32–47. George, R. C., Maier, R. and Robson, K. 2020. Ignoring race: A comparative analysis of education policy in British Columbia and Ontario. Race Ethnicity and Education 23(2), pp. 159–179. Gilmour, A. 2021. Has inclusion gone too far? Education Next 18(4). [online] [Accessed on 9 March 2021] Available from: www.educationnext.org/has-inclusion-gone-toofar-weighing-effects-students-with-disabilities-peers-teachers/ Gilor, O. and Katz, M. 2019. Pre-service teachers’ willingness to engage in inclusive yeaching: An explanatory model. Journal of International Special Needs Education 22(2), pp. 77–89. Gonzalez, T. E., Hernandez-Saca, D. I. and Artiles, A. J. 2017. In search of voice: Theory and methods in K-12 student voice research in the US, 1990–2010. Educational Review 69(4), pp. 451–473. Gordon, C. E. and White, J. P. 2014. Indigenous educational attainment in Canada. The International Indigenous Policy Journal 5(3), p. 6.

497

Frederic Fovet Gow, M. A., Mostert, Y. and Dreyer, L. 2020. The promise of equal education not kept: Specific learning disabilities—The invisible disability. African Journal of Disability 9(1), pp. 1–10. Grigorenko, E. L., Compton, D. L., Fuchs, L. S., Wagner, R. K., Willcutt, E. G. and Fletcher, J. M. 2020. Understanding, educating, and supporting children with specific learning disabilities: 50 years of science and practice. American Psychologist 75(1), pp. 37–51. Gündüzalp, S. and Özan, M. 2019. The power of expectations in school management: Pygmalion effect. Journal of Education and Future 15, pp. 47–62. Hanreddy, A. and Östlund, D. 2020. Alternate curricula as a barrier to inclusive education for students with intellectual disabilities. International Electronic Journal of Elementary Education 12(3), pp. 235–247. [online] [Accessed on 8 March 2021] Available from: www.iejee.com/ index.php/IEJEE/article/view/1086 Hardy, I. and Woodcock, S. 2015. Inclusive education policies: Discourses of difference, diversity and deficit. International Journal of Inclusive Education 19(2), pp. 141–164. Haug, P. 2016. Understanding inclusive education: Ideals and reality. Scandinavian Journal of Disability Research 19(3), pp. 206–217. Herzberg, T. S. and Rosenblum, L. P. 2014. Print to braille: Preparation and accuracy of mathematics materials in K-12 education. Journal of Visual Impairment and Blindness 108(5), pp. 355–367. Hursh, D. 2016. The end of public schools: The corporate agenda to privatize education. New York: Routledge. Johnson, A. 2020. The limits of Inclusion: Teacher attitudes and experience with inclusion of students with learning disabilities (EdD Thesis), Faculty of the School of Education, Loyola Marymount University. [online] [Accessed on 8 March 2021] Available from: https://digitalcommons.lmu.edu/cgi/viewcontent.cgi?article=1936andcontext=et Kapp, S. 2019. How social deficit models exacerbate the medical model: Autism as case in point. Autism Policy and Practice 2(1), pp. 3–28. Katz, L. 2014. Teachers’ reflections on critical pedagogy in the classroom. InterActions: UCLA Journal of Education and Information Studies 10(2). [online] [Accessed on 8 March 2021] Available from: https://escholarship.org/uc/item/2c6968hc Lunsford, K. 2017. Challenges to implementing differentiated instruction in middle school classrooms with mixed skill levels (PhD Thesis), Walden University. [online] [Accessed on 8 March 2021] Available from: https://scholarworks.waldenu.edu/cgi/viewcontent.cgi?article=6300andc ontext=dissertations Metsala, J. L. and Harkins, M. J. 2020. An examination of preservice teachers’ self-efficacy and beliefs about inclusive education. Teacher Education and Special Education 43(2), pp. 178–192. Meyer, A., Rose D. H. and Gordon D. 2014. Universal design for learning: Theory and practice. Wakefield: CAST Professional Publishing. Moore, v. British Columbia (Education) [2012] 3 SCR 360 Moriña, A. and Carnerero, F. 2020. Conceptions of disability at education: A systematic review. International Journal of Disability, Development and Education, pp. 1–5. Mueller, C. 2019. Adolescent understandings of disability labels and social stigma in school. International Journal of Qualitative Studies in Education 32(3), pp. 1–19. No Child Left Behind Act of 2001. 2002. P.L. 107-110, 20 U.S.C. § 6319. Nygård, O. and Behtoui, A. 2020. Access to social capital and educational returns for children of immigrants: Evidence from three Swedish studies. Nordic Journal of Migration Research 10(2), pp. 50–66. OECD. 2018. Meaningful reconciliation: indigenous knowledges flourishing in B. C.’s K-12 education system for the betterment of all students. Future of Education and Skills 2030: Conceptual Learning Framework. [online] [Accessed on 8 March 2021] Available from: www.oecd. org/education/2030-project/contact/Meaningful_reconciliation_indigenous%20knowledges_ flourishing_in_B. C.’s_K-12_education_system_for_the_betterment_of_all_students.pdf Page, A., Berman, J. and Serow, P. 2020 Parent and teacher attitudes towards inclusive education in Nauru. Australasian Journal of Special and Inclusive Education 44(2), pp. 116–128.

498

The Changing Landscape of Inclusive Education Pijl, S. J. 2014. How special needs funding can support inclusive education. In L. Florian (ed.), The Sage handbook of special education. 2nd edition, vol. 1. London: SAGE, pp. 251–262. Rao, K. and Meo, G. 2016. Using Universal Design for Learning to design standards-based lessons. SAGE Open 6(4) [online] [Accessed on 8 March 2021] Available from: https:// journals.sagepub.com/doi/abs/10.1177/2158244016680688 Rees, K. 2017. Models of disability and the categorisation of children with severe and profound learning difficulties: Informing educational approaches based on an understanding of individual needs. Educational and Child Psychology 34(4), pp. 30–39. Owiny, R., Hollingshead, A., Barrio, B. and Stoneman, K. 2019. Engaging preservice teachers in universal design for learning lesson planning. Inclusion 7(1), pp. 12–23. Scott, J. and Holme, J. J. 2016. The political economy of market-based educational policies: Race and reform in urban school districts, 1915 to 2016. Review of Research in Education 40(1), pp. 250–297. Senjam, S. S. 2021. Smartphones for vision rehabilitation: Accessible features and apps, opportunity, challenges, and usability evaluation. In L. M. Castro, D. Cabrero and R. Heimgärtner (eds.), Software Usability. London: IntechOpen. 10.5772/intechopen.97703 Sermier Dessemontet, R. and Bless, G. 2013. The impact of including children with intellectual disability in general education classrooms on the academic achievement of their low-, average-, and high-achieving peers. Journal of Intellectual and Developmental Disability 38(1), pp. 23–30. Stienstra, D. and Nyerere, L. 2016. Race, ethnicity and disability: Charting complex and intersectional terrains. In S. Grech and K. Soldatic (eds.), Disability in the global South. Switzerland: Springer, pp. 255–268. Slee, R. 2011. The irregular school. Exclusion, schooling and inclusive education. London: Routledge. Slee, R. 2019. Belonging in an age of exclusion. International Journal of Inclusive Education 23(9), pp. 909–922. Smith, E. and Douglas, G. 2014. Special educational needs, disability and school accountability: An international perspective. International Journal of Inclusive Education 18(5), pp. 443–458. Tereshchenko, A., Francis, B., Archer, L., Hodgen, J., Mazenod, A., Taylor, B., Pepper, D. and Travers, M-C. 2019. Learners attitudes to mixed-attainment grouping: Examining the views of students of high, middle and low attainment. Research Papers in Education 34(4), pp. 425–444. Tett, L. and Macleod, G. 2020. Enacting home—School partnerships: The roles of headteachers, family-learning practitioners and parents. Cambridge Journal of Education 50(4), pp. 451–468. Traustadóttir, R. 2009. Disability studies, the social model and legal developments. In O. Arnardóttir and G. Quinn (eds.), The UN Convention on the Rights of Persons with Disabilities—European and Scandinavian Perspectives, pp. 1–16. UNESCO. 1994. The Salamanca statement and framework for action on special needs education. Salamanca: World conference on special needs education: Access and quality, 7–10 June. [online] [Accessed on 8 March 2021] Available from: www.european-agency.org/sites/ default/files/salamanca-statement-and-framework.pdf. van Manen, M. 2014. Phenomenology of practice: Meaning-giving methods in phenomenological research and writing. Walnut Creek: Left Coast Press. Verhaeghe, P. P., Van Der Bracht, K. and Van de Putte, B. 2015. Inequalities in social capital and their longitudinal effects on the labour market entry. Social Networks 40, pp. 174–184. Waitoller, F. R. and King Thorius, K. A. 2016. Cross-pollinating culturally sustaining pedagogy and universal design for learning: Towards an inclusive pedagogy that accounts for dis/ ability. Harvard Educational Review 86(3), pp. 366–389. Whitley, J. and Hollweck, T. 2020. Inclusion and equity in education: Current policy reform in Nova Scotia, Canada. Prospects 49(3), pp. 297–312 Wright, A. C. and Taylor, S. 2014. Advocacy by parents of young children with special needs: Activities, processes, and perceived effectiveness. Journal of Social Service Research 40(5), pp. 591–605.

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Vignette Seven MEET ĠINĠA

I am a 15-year-old autistic girl, and I would like you to call me Ġinġa. My favourite quote is Einstein’s: Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid. I was diagnosed with autism in my first year of secondary school. That was the year when I met my hero, Ms R, who provided me with a new lease of life. It was the year that I started feeling the luckiest girl in the world. Before then, I never understood myself, let alone being understood by others. I was made to act, talk, believe, learn, and behave like everyone else even though I did not know how. As a young girl, I grew up thinking that teachers do not care about me. No one mentioned that I have autism, so I did not know. My family did not know. So I felt like a failure. That something was missing from me. I even had to pretend that I did not need help, and the more I pretended, the more I struggled to belong. In a nutshell, I felt helpless and suffocated. Then, it was Ms R who saw through me and noticed that I might be autistic. What a relief it was when I was diagnosed as an autistic girl! Ms R gave me a chance. She unlocked my secrets. She taught me in the way that I learn. She spoke to me in the way that I understood. She listened to me in the way that I communicate. She gave me the proper attention. She gave me space. She believed in me. She let me be myself. She let others know that I am also important. She taught them how to interact with me. She told me that I had promising potential. I realised that nothing is wrong with me. Above all, Ms R gave me a voice which I can use as silently and as loudly as I want. I became free to be me. And I became a happy girl. And I feel lucky, because being happy is the most important thing in life. We live once, and it is important that we live happily. DOI: 10.4324/9781003056737-38

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Unfortunately, not all educators are like Ms R. If educators do not act by example in accepting me for who I am, then how do you expect my classmates to do that? Most educators are not yet aware that just because I do not follow societal rules does not make me an alien. Please pass on this message to them: I feel safe when you show me that my opinion and my feelings matter. My dream is that one day people around the world will get to know me better. I shall write my story, and when they read it, both autistic and non-autistic people will see how awesome autistic girls can be. All we need is to be given a chance to show our beautiful colours. A chance to be us. And to be reassured that being different is okay. It is then that our world will be a better place. Ġinġa is 15 years old and lives in Malta. Co-author: Georgette Bajada (University of Malta).

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28 ‘LAWFARE’ AND THE ROLE OF CIVIL SOCIETY ON PROMOTING THE INCLUSIVE EDUCATION PUBLIC POLICY IN BRAZIL Rodrigo Hübner Mendes and Luiza Andrade Corrêa Introduction International law on the inclusion of children in mainstream schools, regardless of their physical, intellectual, social, emotional, linguistic, or other conditions, has evolved over time. An important moment was the UNESCO Convention Against Discrimination in Education (1960), which demanded that countries actively reduce explicit and implicit barriers in education. Other international legislation has addressed the need to include every child and young person within mainstream schools. Subsequently, the first framework on inclusive education was the Convention on the Rights of the Child (1989), which upholds the rights of children with disabilities to education. The Salamanca Statement and Framework for Action on Special Needs Education (United Nations 1994) was a big step towards inclusive education, urging states parties to adopt this approach as a matter of law or policy. The apex of the evolution in international legislation came in 2006, when the General Assembly of the United Nations in New York adopted the Convention on the Rights of Persons with Disabilities (2006) (CRPD). Today, in 2021, a number of 182 countries have already rectified it, and 164 countries (or regional integration organisations) have signed the CRPD and its Optional Protocol. The CRPD is a very important international landmark which establishes the social relational model of disability, considering not only the person’s impairments but also the social responsibility of removing the barriers that may hinder their full and effective participation in society on an equal basis with others. Article 24 of the document is dedicated to education and determines that states [arties must not only recognise the right of persons with disabilities to education but also ensure an inclusive education system at all levels. DOI: 10.4324/9781003056737-39

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The Convention on the Rights of Persons With Disabilities: Statements and General Comment 4 The CRPD states in Article 24 (Education) that states parties recognise the right of persons with disabilities to education on the basis of equal opportunity, ensuring an inclusive education system at all levels. The Convention specifically declares that persons with disabilities must not be excluded from the general education system and that reasonable accommodation of the individual’s requirements is to be provided by the state. Item 2 of this article also determines that the states parties shall ensure that persons with disabilities are not excluded from the general education system on the basis of disability and free reasonable accommodation of the individual’s requirements is provided. The Committee on the Rights of Persons with Disabilities, composed of 18 experts, whose role is to monitor the progress made towards implementation of the Convention, expressly declared in General Comment 4 that states parties must ‘move as expeditiously and effectively as possible towards the full realisation of article 24 and that this is not compatible with sustaining two systems of education: mainstream and special/segregated education systems’ (United Nations 2016, p. 11). According to this Comment, states parties are encouraged to redefine budgetary allocations for education, including transferring budgets to develop inclusive education and not to install any deliberately retrogressive measures. General Comment 4 attests that inclusive education is the only form of achieving high-quality education for all learners and social development for persons with disabilities, but the Committee is concerned that this scenario is far from reality since ‘many millions of persons with disabilities continue to be denied the right to education’ or are enrolled in special education institutions isolated from their peers (United Nations 2016, p. 3). It also determines that, to promote a quality inclusive education system, it is important to ‘focuses on the full and effective participation, accessibility, attendance and achievement of all students’ so it includes access and permanency of students in mainstream schools without discrimination. ‘It requires an in-depth transformation of education systems in legislation, policy and the mechanisms for financing, administering, designing, delivering and monitoring education’ (United Nations 2016, p. 3). Despite the international status of the CRPD, inclusive education can be subject to ideological changes according to the political representatives’ views in different countries. The next section presents some examples of the inclusive education scenario in some countries around the world. Therefore, the cases were selected especially in view of the presence of political setbacks in the right to inclusive education in recent years.

Inclusive Education Around the World The inclusive education scenario around the world is not as positive as one could hope. According to a report released by UNESCO in 2020, 25% of countries have provisions for education in segregated settings, especially in Central and Southern Asia, Eastern and South-eastern Asia, and 504

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Latin America and the Caribbean. Some 48% combine mainstreaming with separate settings, usually for those with severe disabilities; 10% privilege integration; and 17% have legislative provisions to educate people with disabilities in inclusive settings, with the highest prevalence observed in Europe and Northern America and in Oceania. (UNESCO 2020) Most countries still allow segregation, even if it is combined with education in mainstream settings for some. Although most countries around the world have some regulation towards inclusion, and although inclusion itself is considered a process rather than an outcome, the practice remains far from ideal (Cologon 2019). According to the same report, the implementation of the law is manifested to different degrees in every country. Additionally, even though in many countries the law is in place, it is often subject to setbacks as a result of different political perspectives. There are many examples of this situation around the world. Despite being signatories of the Convention, the United Kingdom’s coalition government in 2010 affirmed that they would end ‘bias’ towards inclusion, meaning, that they intended to reincorporate the possibility of special schools and specialist units in mainstream settings (Runswick-Cole 2011). In fact, the legal framework points towards inclusive education, but it still encompasses a view that the ‘problem’ of special educational needs relates to ‘deficits/dysfunctions’ of the child and by their supposed difficulties in learning rather than a focus on the need for schools to change their cultures and practices (Runswick-Cole 2011). In Malta, the government announced measures to mitigate the impact of the global pandemic of Covid-19 and ensure economic growth, through a National Reform Programme (NRP). In this programme, the government announced a series of measures, among which was that they were ‘investing heavily in education infrastructure and resources including educational facilities for children with disabilities who cannot attend mainstream educational facilities’ (Malta National Reform Programme 2020, pp. 6–7). If uninformed, one could think this is positive to education, but it retrocedes to exclude students with disabilities in segregating facilities. Iraq had a well-structured education system, but it was undermined by decades of conflicts and underinvestment (UNICEF 2018). In 2009, the government put in place a plan to support the development of a dedicated national inclusive education program which intended to enrol students with disabilities in mainstream schools. But in 2011, a ministerial decree authorised the Ministry of Education to create special classes and schools to educate students who are ‘slow learners or have visual or hearing weakness’ (UNESCO 2020, pp. 36–37). In many countries, courts have played a central role in guaranteeing the implementation of the inclusive education legislation. In Italy, for example, in 1987, the Constitutional Court (sentence no. 215 of 1987, in law, no. 5) claimed that inclusive education is an important factor of socialisation, and it is also a very important tool to stimulate the learning process of students with disabilities. In judgment no. 80 of 2010, the Court decided that the legislator’s discretion to establish public policies 505

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and priorities is not absolute. It is limited by the respect of an untouchable core of guarantees, being mandatory to preserve the right to inclusive education (Carnovali 2017). Italy is known for having a consolidated, inclusive education (integrazione scolastica) and for enrolling every student in mainstream classrooms, considering segregated schools a crime against human rights, and these judicial decisions reinforced this view. Although the Italian Ministry of Education recently decided to change the policy to create a new category of learners (2013), specifically students ‘with special educational needs (SEN)’, and in 2017 the government passed a school reform known as the ‘Buona Scuola’ (the good school), which opens the possibility of students with disabilities receiving different educational and didactical strategies, in practice, this development reinforces stigma and promotes exclusive educational practices instead of prioritising a Universal Design for Learning which enables one class design with no barriers and which works for all learners, enhancing quality of education for all (D’Alessio 2018). The Brazilian case described next provides a useful case study demonstrating how having a legal framework in place is important but not sufficient to guarantee an inclusive education system that is effective and consistent in its implementation. It is also representative of the role of Constitutional Courts and civil society to guarantee the right to inclusive education of people with disabilities.

The Brazilian Case In a ceremony to launch the new special education public policy that brought back to Brazil a specialised and separate education system for schooling of people with disabilities, the Minister of Education of Brazil, Milton Ribeiro, said: Currently, it is urgent to recognise that many students are not benefiting from inclusion in ordinary classes. Students, families, teachers and school managers cry out for alternatives. The Federal Government has not been insensitive to this reality. In response to this request we created the Special Education Policy. (Brazil 2020b) The Decree, signed by President Jair Bolsonaro on 30 September 2020, created a public policy that the government called the National Special Education Policy: equitable, inclusive, and lifelong learning (Brazil 2020a). Appropriating the words of the CRPD, this policy was the opposite of its name, since it reintroduced a system of special schools, financed by the public authorities, into the Brazilian legal system. The Decree adopted the idea of special schools, specialised classes in mainstream schools, and bilingual schools for deaf students. In addition, it distorted the concept of inclusion, stating that inclusive mainstream schools would be those educational institutions which offer education to students with disabilities in mainstream classes, specialised classes, or resource rooms. So it incorporated the possibility of classes destined only for students with disabilities under the inclusion concept. 506

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At the same ceremony to launch the policy, First Lady Michele Bolsonaro highlighted the idea of families’ right to choose. This has been the main argument in favour of the return of a special education system, having even been manifested in the Decree in its Article 6, IV, ‘to prioritise the participation of the student and his/ her family in the decision process about the services and resources of the specialised educational assistance’ (Brazil 2020b). In addition, the Decree provided that it would retrospectively define some criteria so that federative entities (states and municipalities) would receive technical support and financial resources from the Union if they actively adhere to the policy. The Decree did not specify what would configure this adhesion, what would be the requirements for the financial transfer, how much financial resource, from which funding sources, or any other specifications. This strategy indicates that this was included in the Decree with the purpose to encourage states and municipalities to return to a model where it is possible to educate students with disabilities in special schools. Later on, in 2021, the government clarified its intentions regarding the Decree when the Ministry of Education stated that ‘students with disabilities hinder other students’. Then, when facing the reaction of civil society against this speech, he stated: We have, today, 1.3 million children with disabilities studying in public schools. Of this total, 12% have a degree of disability that is impossible to live with. What our government has done: instead of simply throwing them into a classroom, for ‘inclusivism’, we are creating special classrooms so that these children can receive the treatment they deserve and need. (Alves 2021) Minister Milton Ribeiro did not inform the source of this statistic, but in 2020, Brazil had 1.3 million children and young people with disabilities in the educational system, of which around 12% were still enrolled in special education institutions (Brazil 2019a). Also, there is no anterior reference in Brazilian bibliography in education on the term ‘inclusivism’. The strategic use of the ‘ism’ suffix suggests an ideology rather than a principle established in international law. So the best hypothesis is that he was mentioning that these students who are not yet included could never be educated in the mainstream schools. By this declaration the government stated very clearly their ideological and discriminatory point of view, ignoring the students’ rights and the CRPD.

The History of Inclusive Education Rights in Brazil The dispute over what type of education system—inclusive or segregated—will prevail is not new. In Brazil, as in other parts of the world, the education of people with disabilities began in specialised institutions (Callus and Farrugia 2016). In the 19th century, there were some private institutions to assist people with disabilities, inspired by North American and European experiences. The initiatives began to be integrated into public 507

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policies around the 1960s. It was only in the 1990s that people with disabilities movements started to articulate in favour of school inclusion (Mantoan, n.d.).

The Brazilian Legal Framework As described earlier, the most representative milestone of this achievement was the signing of the CRPD in 2006 and its subsequent ratification and incorporation into the national legal system with constitutional amendment status (Brazil 2006). In Brazil, international treaties that are ratified by the National Congress with the same necessary quorum for approval of Amendments to the Federal Constitution are considered components of the ‘constitutionality bloc’, acquiring the same status as the Constitution itself (Brazil 1998a). This procedure is provided for in the Federal Constitution and has already been analysed and reiterated by the Brazilian Supreme Court. In 2008, the modality of education for people with disabilities continued to be called special education but started to adopt an inclusive perspective. It is important to note that Brazil is a country of civil law tradition. Therefore, its legal rules are based on written laws and codes, including the Federal Constitution. In this sense, much of the dispute around which educational system is to be adopted is framed around legislation and regulations. The current Constitution of the Federative Republic of Brazil was promulgated in 1986 and establishes human dignity as the foundation of the Federative Republic of Brazil in its first article. It also establishes as a fundamental objective to build a free, just, and solidary society, as well as to promote the good of all, without prejudice of origin, race, sex, colour, age, and any other forms of discrimination (Article 3, items I and IV). Based on these guidelines, any law or decree that separates and discriminates against people based on prejudices regarding their personal characteristics is contrary to constitutional precepts. With regard to education, item I of Article 208 of the Federal Constitution establishes that ‘compulsory and free basic education from 4 (four) to 17 (seventeen) years old must be guaranteed’. As for item III, it guarantees ‘specialised educational assistance to people with disabilities, preferably in the regular school system’. After the ratification of the CRPD, by Decree No. 6,949 in 2009, Article 208, III, of the Brazilian Federal Constitution started to be interpreted in conjunction with Article 24 of the CRPD. For this reason, the Brazilian system must be inclusive, and the specialised educational services referred to in the Constitution are to be understood as an additional support service for these students offered at the end of classes, preferably in the multifunctional resource room of their own schools, but it is permitted that they are offered at specialised institutions as a complementary service. In the Brazilian public school system, no child’s enrolment can be denied while they are legally underage, that is, under the age of 17. Besides, it is also completely free of any fees for students and their families. The state provides the teaching, the uniforms, school materials, and the feeding of the students and any additional support students may need. Alongside this system, there are several private schools in which fees for education services are charged. 508

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In 2008, one year before the ratification of the CRPD, a new special education policy was enacted in Brazil, which was designed with the intense participation of civil society. The Special Education Policy in the Inclusive Perspective (SEPIP) (Brazil 2008) adopted the social concept of disability and had as its main objective the educational inclusion of students with disabilities in the mainstream system at all levels and on equal terms with the other students. By this public policy, the state is responsible for providing all the resources necessary for the student’s effective participation and to offer specialised educational assistance in the classroom as well as continuous teacher training. SEPIP provides that students with disabilities may have access to support professionals, such as instructors, sign language interpreters, as well as personal assistance for students in need of support in personal hygiene, food, and transportation, among others. The design of this public policy intends to promote the rights safeguarded by the CRPD. It provides that the state must (1) ensure the educational inclusion of students with disabilities, guiding education systems to ensure access to regular education, with participation, learning, and continuity at the highest levels of education; (2) promote the transversality of the special education modality from early childhood education to higher education; (3) offer specialised educational assistance; (4) train teachers for specialised educational assistance and other education professionals for inclusion; (5) ensure family and community participation; (6) guarantee architectural accessibility, transport, furniture, communications, and information; (7) secure intersectoral coordination in the implementation of public policies. The following is a timeline on the transformation of the regulation landmarks over the years in Brazil: 1986 Constitution of the Federative Republic of Brazil 2006 Convention on the Rights of Persons with Disabilities 2008 Special Education Policy in the Inclusive Perspective 2009 Decree No. 6,949, Article 208, III, of Brazilian Federal Constitution 2015 Brazilian Inclusion Law 2020 Decree No. 10.502, the National Special Education Policy: Equitable, Inclusive and Lifelong Learning (revoked) 2020 Congress voted for the changing of the Fund for Maintenance and Development of Basic Education to fund special institutions with public resources again

The Brazilian Context on Inclusive and Special Education According to the census of basic education, the Special Education Policy in the Inclusive Perspective increased the enrolment of students with disabilities in mainstream schools, as shown in the figure and the table that follow. Both the previous graph and the table show a steady increase in the number of students enrolled in mainstream schools as of 2009 and a consequent drop in the number of students enrolled in special education institutions, reaching the number of 88% of 509

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510 Figure 28.1

Student enrolment of students with disabilities, global developmental disorders, and high skills/giftedness.

Source: Educational Census of National Institute of Educational Studies, Anísio Teixeira, Brazilian Ministry of Education.

‘Lawfare’ and the Role of Civil Society on Inclusive Education Table 28.1 Student enrolment of students with disabilities, global developmental disorders, and high skills/giftedness 2008–2020 Year

Common classes at mainstream schools

Specialised schools and special classes

Total

% in common classes

% in special institutions/classes

2020 2019 2018 2017 2016 2015 2014 2013 2012 2011 2010 2009 2008 2007

1.152.875 1.090.805 1.014.661 896.809 796.486 750.983 698.768 648.921 620.777 558.423 484.332 387.031 375.775 306.136

156.025 160.162 166.615 169.637 174.886 179.700 188.047 194.421 199.656 193.882 218.271 252.687 319.924 348.470

1.308.900 1.250.967 1.181.276 1.066.446 971.372 930.683 886.815 843.342 820.433 752.305 702.603 639.718 695.699 654.606

88,1 87,2 85,9 84,1 82,0 80,7 78,8 76,9 75,7 74,2 68,9 60,5 54,0 46,8

11,9 12,8 14,1 15,9 18,0 19,3 21,2 23,1 24,3 25,8 31,1 39,5 46,0 53,2

Source: Educational Census of National Institute of Educational Studies, Anísio Teixeira, Brazilian Ministry of Education.

students enrolled in mainstream schools in 2020. Considering only students aged 4 to 17 years with disabilities, it appears that the percentage of enrolments of students included in common class has also been gradually increasing, from 88.4% in 2015 to 92.8% in 2019 (Brazil 2019a). When comparing the offer of inclusive education in different federated entities, it is observed that the state (96.7%) and municipal (95.9%) networks have the highest percentage of students. However, in the private school network, the reality is still different: of the total of 196,662 enrolments of students with disabilities, only 76,874 (39.1%) are in common classes (Brazil 2019b, p. 46). This happens because in Brazil most of the special schools are private non-profit philanthropic schools. So the data does not differentiate the special education institutions from the other private schools, where the student has to pay fees to attend. The special education institutions are financed by public resources which pay for every enrolled student with resources from the education budget. So they are free services for the students and their families. They also provide health and rehabilitation therapy services for free and receive public funds for it from the health budget. Since they are non-profit organisations, they are also subsidised by private donations. On the other hand, the private schooling system, where the students pay fees to attend, cannot deny or charge extra fees for the enrolment of students with disabilities. In Brazil, one of the main public education-funding sources is the Fund for Maintenance and Development of Basic Education (Brazil 2007). This Fund is composed of federal, state, and municipal public resources and aims to finance the basic education system, starting with 4-year-old children until they finish high school at the age 511

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of 17. The aforementioned SEPIP incorporated a specialised educational assistance programme which is complementary to regular schooling to every student with disabilities and which triggered the need to organise a different financing system. The solution was to create a system of double enrolment for students with disabilities, in which the Fund would be able to finance both the regular schooling and the specialised educational assistance, one in the mainstream school, and the other in specialised educational assistance in the mainstream school itself or in special education institutions after school hours. This policy reverses the funding order that, historically, has supported the special education model in a segregationist perspective, starting to support the inclusive development of public schools (Dutra and Dutra 2020, p. 115–116). Although the numbers are encouraging, inclusion does not only concern the numbers of enrolments in mainstream schools. The first step is to guarantee the integration through the enrolment of students with disabilities and to remove every architectural, communicational, and attitudinal barriers. But it is also imperative to actually include the student, to provide interaction between the student with disabilities and the rest of the school community, as this interaction is a fundamental ingredient for the student to be challenged and to develop the maximum of their potential. It is also very important to guarantee an efficient learning process, providing the same curricula and improving the pedagogical practices through a universal design for learning (CAST 2018), and enable the active participation of every single student. The fact that a student has a disability cannot be used as an excuse for them to be deprived of the content in its entirety, even if this involves flexibility or diversification of pedagogical strategies. After all, the ultimate goal is a school that equalises opportunities and diversifies its teaching strategies because it realises that each student learns in a particular way, not only students with disabilities (Mendes 2020). Considering these goals, the implementation of every public policy requirement in all Brazilian municipalities and states requires a series of practical improvements. It is a great challenge, considering Brazil has more than 200,000 schools. On the other hand, if inclusion is not yet satisfactory, it means that public management is in deficit and the solution would be to repair the problem. The solution, therefore, is not to return to practices that justify segregation due to disability, under the justification of an alleged unpreparedness of the mainstream school, but to significantly expand the investments necessary to meet the educational specificities of this group. The cultural context in Brazil is also encouraging. A survey named ‘What the Brazilian population thinks about inclusive education’, commissioned by the Alana Institute and carried out by Datafolha, showed that most Brazilians agree that inclusive education is a good way to seek equity and quality in education (Datafolha 2019). Over 2,000 people over 16 years old were interviewed, and data was collected from more than 7,000 Brazilians from 130 municipalities. According to the research, 86% of the respondents believed that schools become better by including people with disabilities. For 76% of them, children with disabilities learn more when they study together with children with no disabilities. Among those who live with people with disabilities at school, the attitude is even more favourable: 93% agree that schools become better when there is inclusion (Datafolha 2019). 512

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Additionally, the establishment of an inclusive public policy made it possible to observe numerous cases of very successful inclusion. An example in Rio Branco, a municipality in northern Brazil, was Clarice Fecury, a school that has successfully developed a teaching model that is in tune with the conception of inclusive education adopted in Brazil. The commitment towards embracing human differences pervades the school’s pedagogical project, extends to its strategic planning, and encompasses the classroom practices and the assessment methods. The school’s principal, Iran Saraiva, exerts strong leadership in order to mobilise the surrounding community and to establish articulations with both governmental and civil society organisations. Through numerous partnerships, this public school is able to offer high-quality inclusive education (Mendes 2020). Another example is the city of Florianopolis, in the south of Brazil, which has built a trajectory of good practices in relation to guaranteeing education for children and adolescents with disabilities in Brazil. The Public Administration has developed a broad and solid set of public policies that includes the provision of specialised educational assistance, accessible transportation, and support teachers, among others. The Donícia Maria da Costa Basic School is one of the educational units of the municipal network that stands out because it invests efforts to involve the community in the management process. The families and people who live around the school participate in school decisions through assembly meetings and dialogue about the best choices and practices. The school also recognises the relevance of the team of teachers so that students have access to curricular content (Mendes 2020). These examples of best practices show that, with a positive legal framework in place, it is possible to invest efforts into implementing public policies in the most effective way. Despite that, on many occasions, it is still subject to the school managers will and efforts to build a consistent inclusion programme. On the other hand, the specialised institutions in Brazil are mostly financed by public resources, and they presuppose that some students with disabilities are unable to learn the content and components proposed in the regular curriculum. As a consequence, they teach through a special curriculum which commonly involves activities related to the development of basic skills, self-awareness, personal care, and daily living (Brazil 1998b). This system violates the right to education of people with disabilities once they do not get the opportunity to access the curriculum, imposing a great and impassable attitudinal barrier. As noted previously, in 2015 Brazil approved the Brazilian Inclusion Law (Brazil 2015), which states that persons with disabilities have the right to education and that the school system must be inclusive at all levels and ensure lifelong learning. This same law also determines that it is the duty of the state, the family, the school community, and society to ensure quality education for people with disabilities, making them safe from all forms of violence, negligence, and discrimination. Ensuring an inclusive education system demands improvements in order to guarantee conditions of access, permanence, participation, and learning, through the offer of services and accessibility resources that eliminate barriers and promote full inclusion. It also entails offering bilingual education particularly for deaf students, using 513

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Brazilian sign language as a first language, and in the written modality of Portuguese as a second language, in bilingual schools and classes, and in inclusive schools. This law also states the same measures for private schools and prohibits that they charge extra fees to families of children with disabilities. This law was questioned before the Brazilian Supreme Court (ADI 5357), which in 2016 decided for its constitutionality (Brazilian Supreme Court 2020a). The lawsuit, proposed by a political party, questioned the prohibition of private schools to charge extra fees for the enrolment of students with disabilities, alleging an infringement of the free market principle. On that occasion, the Federal Supreme Court ruled that inclusive education at all levels of education is an imperative that is set by explicit rule. The ruling also stated that it is only with living with difference and with its necessary acceptance that there can be the construction of a free, just, and solidary society, in which the good of all is promoted without prejudice of origin, race, sex, colour, age, and any other forms of discrimination. Therefore, the Brazilian Supreme Court indicated that not only public schools but also private ones should be guided by equality and could not charge extra fees for the enrolment of children with disabilities. Schools are also obliged to provide any necessary means and supports to guarantee their material equality in the learning process. In 2020, the President of the Republic signed Decree 10.502/2020 with a public policy that would represent the return to the special school system. As mentioned before, this public policy reincorporated a schooling system in Brazil which would allow the existence and public financing of special schools, specialised classes in mainstream schools, and bilingual schools for deaf students. It also mentioned federal public funding and technical support for municipalities and states which opted to implement the policy. An additional factor to this dispute is that in Brazil, there is maximum value determined for public spending in the area of education, which means that the resources available for investment in inclusion would necessarily be directed to special schools to meet the demands of this new policy. In response to the Decree, Brazilian civil society mobilised. The Brazilian Inclusion Network, formed by 18 organisations of and for people with disabilities, articulated to pressure public authorities. Also, the Brazilian Coalition for Inclusive Education, a group of around 50 civil society organisations in the areas of human rights, people with disabilities, children and adolescents, and education, was created with the purpose of acting in advocacy for the repeal of the Decree. In a short time, there were 15 proposals to revoke in the National Congress and two cases of strategic litigation in the Supreme Federal Court. The topic had a great impact on the formal and social media. The lawsuit on the Brazilian Supreme Court had a great repercussion. The civil society and some state-organised groups presented petitions before the Court, 14 of which were for the declaration on the constitutionality of the Decree, and the other 33 were asking for the declaration of unconstitutionality and, therefore, declaration by the Court that according to the CRPD the schooling system must be inclusive. On 18 December 2020, the plenary of the Supreme Federal Court suspended Decree 10.502/2020 until the Court had the opportunity to discuss the merits 514

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(Brazilian Supreme Court 2020b). In its decision, the Court considered that inclusion is a value preserved at the Convention on the Rights of Persons with Disabilities and that it is part of our Constitution. So the Court stated that, although special education institutions may still exist, it is unconstitutional to implement an exclusive school system through a public policy. Although there was this temporary victory in the judiciary arena concerning the Public Policy, the Brazilian National Congress voted to change the Fund for Maintenance and Development of Basic Education financing system in December 2020 (Brazil 2020c). It permitted the financing of the enrolments of students with disabilities in special schools, changing the ruling of this financing being exceptional for specialised educational assistance as a second enrolment. Although Brazil ratified the Convention on the Rights of Persons with Disabilities (CRPD) and is supposedly committed to the implementation of inclusive education, the right legislation is always subject to changes according to the political point of view of the executive and legislatives branches over time. The changes back and forward may generate a major setback at the process of inclusion of students with disabilities. Despite that, the country seems to be moving forward towards inclusion, increasing the number of students enrolled in mainstream schools every year, especially due to pressure and constant monitoring of the civil society.

The Lawfare Framework What has happened in the Brazilian case, as in other different cases around the globe, is typical lawfare: disputing about whether inclusive education should or should not be the rule in every country. Gloppen (2019, p. 1) conceptualises lawfare as being ‘long-term ideological wars’. It could be summarised as a political and regulatory dispute played out alternately by ideologically opposed groups. The strife takes place in domestic and international arenas, and they often reshape their tactics in response to their opponents’ strategies and are also intertwined with electoral politics. These disputes happen in many different arenas, where civil society interacts with the legislative, executive, and judiciary arenas. It also explains why having a consistent legislative and regulatory framework in place is not enough for guaranteeing the right of inclusive education once groups interested in the opposite keep on creating several formal strategies to change the ruling. The inclusive education field is complex and involves a broad range of legislation both at the national and the international level. The legislation moves forward and back according to the government in place and the strategies played by civil society. There are several economic interests involved in advocating for a special schooling system, because public resources and private donations finance it. The actors involved in the lawfare have different sets of human and financial resources, influence networks and tools to try to transform the political context in which education regulation stands. Also, in Brazil, as in many other countries, there have been several litigation disputes over the years which were central for shaping the scenario as it is today. The 515

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interest groups try to lobby the Parliament in order to have legislation created in defence of what they believe. But this result is difficult to achieve, as the legislative branch is composed of many actors and involves disputing other interests. When they fail to produce legislation or the legislation is opposite to their interests, the next strategy is often litigation. As a result, courts are often a very important lawfare resource to advance in progressive education rights. But it may also have its drawbacks, since there is no guarantee of result, and the decision-making process is not transparent. There are both national and international actors involved in defending inclusion as well as those who defend segregated and specialised education. The strategies vary over time and involve the executive, judicial, and legislative arenas, as well as motivating the civil society and the families of students with disabilities. Brazil has been moving forward towards inclusion, but sometimes the regulation is changed towards segregation, retroceding already-consolidated rights. The problem with lawfare is that civil society frequently does not have the needed resources to fight these battles and simultaneously monitor the implementation of law to increase the quality of the inclusion in schools. So it turns into a never-ending, vicious circle in which the alleged low quality of inclusion is used as an argument to defend segregation. Thus, the Brazilian case is a representative illustration of the lawfare around which education system is best for students with disabilities. These same disputes around the inclusive educational system also happen in many other countries, regardless of their public incomes or level of development, as demonstrated earlier in this chapter. A worldwide changing of culture is needed to learn and accept that every person has the right to quality education in a mainstream school.

Final Considerations The lawfare around the issue of special schooling is not new. Two ideological opposite groups have been battling for years around the right to education of students with disabilities, one believing it must be inclusive, and the other defending that, on occasions, it should be exclusive and segregated. They both end up using law and courts as tools and sites of battle (Gloppen 2019). The dispute impinges on the destination of public investments. Therefore, the special education facilities are constantly fighting for resources. The opposite side is grounded in moral beliefs that inclusive education is the best option for every student, not only students with disabilities, as it is also a fundamental right of the children and young people. As a result of these disagreements, some families face dilemmas on whether they should be able to choose which type of school their children will attend. Despite that, inclusive education is a fundamental right of the child or young person to which the family cannot waive. This Brazilian case demonstrates the need for constant monitoring of legislation and public policies by civil society, given that it is the only stable segment of society not subject to the democratic alteration of power. 516

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Even though it has been a constant battle, the collateral effects of the litigation were that they triggered popular engagement, the creation of civil society organisations networks and coalitions. These are fruits that are likely to withstand time. Even though there was a provisional win, constant vigilance is required to avoid further setbacks. The existence of an inclusive regulation does not guarantee its implementation or its continuation. The role of civil society is to monitor and advocate for the improvement of inclusion, because it is always subject to setbacks. If you wish to learn more about inclusive education in Brazil and around the world, please access the Diversa Portal where you can find cases of good practice, research, and papers. There you can also find tutorials and experience reports about accessible materials produced by educators who experience a teacher training where they learn about the maker culture and inclusive education. The book Inclusive Education in the Practice describes cases of inclusive education all over Brazil. The book is available at: https://www.fundacaosantillana.org.br/ publicacao/educacao-inclusiva-na-pratica/. An interesting example of good practices in inclusion took place in Rio Branco, a municipality in the north of Brazil. The Clarice Fecury school has successfully adopted the inclusion principles in the classroom practices. The school management has established several partnerships in order to promote the inclusion of students with different types of disabilities. Furthermore, the School’s Political Pedagogical Project already considers equity as a guiding principle and values of inclusive education. The school adopted principles of democratic and participatory management and the community of the territory around the school was constantly engaged in this process.

References Alves, P. 2021 Ministro da Educação diz que há crianças com grau de deficiência em que ‘é impossível a convivência’ [Minitry of Education says there are children with disabilities impossible to live with]. G1 Journal, Brazil. [online] [Accessed on 19 August 2021] Available from: https://g1.globo.com/pe/pernambuco/noticia/2021/08/19/ministro-daeducacao-criancas-impossivel-convivencia.ghtml Brazil. 1998a. Brazilian federal constitution. Available from: www.planalto.gov.br/ccivil_03/ constituicao/constituicao.htm Brazil. 1998b. Ministério da Educação. Secretaria do Ensino Fundamental. Secretaria de Educação Especial. Parâmetros curriculares nacionais. Adaptações curriculares. Estratégias para a educação de alunos com necessidades educacionais especiais. [Ministry of Education. Secretary of Elementary Education. Secretary of Special Education. National curriculum parameters. Curricular adaptations. Strategies for the education of students with special educational needs.] Brasília: MEC/SEF/SEESP. Brazil. 2006. Decree No. 6,949 in 2009. Available from: www.planalto.gov.br/ccivil_03/_ ato2007-2010/2009/decreto/d6949.htm Brazil. 2007. Fund for maintenance and development of basic education institution law. Available from: www.planalto.gov.br/ccivil_03/_ato2007-2010/2007/lei/l11494.htm

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Rodrigo Hübner Mendes and Luiza Andrade Corrêa Brazil. 2008. Special education policy in the inclusive perspective. [online] [Accessed on 11 March 2021] Available from: http://portal.mec.gov.br/arquivos/pdf/politicaeducespecial.pdf Brazil. 2015. Brazilian inclusion law (Law n. 13.146 of 2015). [online] [Accessed on 24 March 2021] Available from: www.planalto.gov.br/ccivil_03/_ato2015-2018/2015/lei/l13146.htm. Brazil. 2019a. Census of basic education. [online] [Accessed on 9 March 2021] Available from: http://portal.inep.gov.br/documents/186968/0/Notas+Estat%C3%ADsticas+-+Censo+d a+Educação+Básica+2019/43bf4c5b-b478-4c5d-ae17-7d55ced4c37d?version=1.0 Brazil. 2019b. Census of basic education. [online] [Accessed on 9 March 2021] Available from: https://download.inep.gov.br/publicacoes/institucionais/estatisticas_e_indicadores/ resumo_tecnico_censo_da_educacao_basica_2019.pdf Brazil. 2020a. Decree 10.502/2020. [online] [Accessed on 7 February 2021] Available from: https://presrepublica.jusbrasil.com.br/legislacao/936694859/decreto-10502-20 Brazil. 2020b. Decree 10.502/2020 Launching Ceremony. Brasília. [online] [Accessed on 7 February 2021] Available from: www.youtube.com/watch?v=RCtazVYVFFg. Brazil. 2020c. Law n 14.113, of 2020. Brasília. [online] [Accessed on 1 March 2021] Available from: www.in.gov.br/en/web/dou/-/lei-n-14.113-de-25-de-dezembro-de-2020-296390151 Brazil. 2020d. Educational census of national institute of educational studies anísio teixeira, Brazilian ministry of education, 2008–2020. [online] [Accessed on 19 March 2021] Available from: www.gov.br/inep/pt-br/areas-de-atuacao/pesquisas-estatisticas-e-indicadores/ censo-escolar/resultados Brazilian Supreme Court. 2020a. ADI 5357 Brazilian Supreme Court. 2020b. Plenário confirma suspensão de Decreto que instituiu Política Nacional de Educação Especial. [Plenary confirms suspension of decree that instituted national policy on special education]. [online] [Accessed on 12 February 2021] Available from: https://portal.stf.jus.br/noticias/verNoticiaDetalhe.asp?idConteudo=457869&ori=1 Callus, A. M. and Farrugia, R. 2016. The disabled child’s participation rights. London: Routledge. Carnovali, S. 2017. The right to inclusive education of persons with disabilities in Italy. Reflections and perspectives. Athens Journal of Education 4(4), pp. 315–326. CAST. 2018. Universal design for learning guidelines version 2.2. [online] [Accessed on 27 March 2021] Available from: http://udlguidelines.cast.org. Cologon, K. 2019. Towards inclusive education: A necessary process of transformation. Children and young people with disability Australia. Available from: https://apo.org.au/sites/ default/files/resource-files/2019-10/apo-nid265286_1.pdf Convention against Discrimination in Education 1960. [online] [Accessed on 10 March 2021] Available from: http://portal.unesco.org/en/ev.php-url_id=12949&url_do=do_ topic&url_section=201.html. Convention on the Rights of Persons with Disabilities and Optional Protocol 2006. [online] [Accessed on 5 April 2021] Available from: www.un.org/disabilities/documents/convention/convoptprot-e.pdf. Convention on the Rights of the Child. 1989. [online] [Accessed on 24 March 2021] Available from: www.ohchr.org/en/professionalinterest/pages/crc.aspx D’Alessio, Simona. 2018. Inclusion in Italy: How supposedly inclusive policies fail. Inclusive education Canada. [online] [Accessed on 5 April 2021] Available from: https://inclusiveeducation.ca/2018/03/13/inclusion-in-italy-how-supposedly-inclusive-policies-fail/ Datafolha. 2019. O que a população brasileira pensa sobre educação inclusive. [What Brazilian population thinks about inclusive education] July. [online] [Accessed on 3 February 2021] Available from: https://alana.org.br/wp-content/uploads/2019/10/Pesquisa-Datafolha_oque-a-populacao-brasileira-pensa-sobre-educacao-inclusiva.pdf. Dutra, C. P. S. and Dutra, M. C. 2020. Após dez anos da Convenção Sobre Direito das Pessoas com Deficiência, o que mudou no Brasil? [After tem years of the Convention on the Rights of Persons with Disabilities, what has changed in Brazil?]. In R. M. Machado and M. T. Eglér (eds.), Educação e Inclusão: entendimentos, proposições e práticas. Blumenau: Edifurb, pp. 111–122.

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‘Lawfare’ and the Role of Civil Society on Inclusive Education Gloppen, S. 2019. Conceptualizing Lawfare: A typology & theoretical framwork. University of Bergen, 2019. [online] [Accessed on 7 April 2021] Available from: https://bit.ly/3oSmhPV. Malta. National Reform Programme. 2020. [online] [Accessed on 24 March 2021] Available from: https://ec.europa.eu/info/sites/info/files/2020-european-semester-nationalreform-programme-malta_en_0.pdf. Mantoan n.d. Special education in Brazil—from exclusion to inclusion. Campinas Federal University. [online] [Accessed on 11 March 2021] Available from: www.lite.fe.unicamp.br/cursos/ nt/ta1.3.htm. Mendes, R. H. 2020. Educação inclusiva na prática: Experiências que ilustram como podemos acolher todos e perseguir altas expectativas para cada um [Inclusive education in practice: experiences that illustrate how we can welcome everyone and pursue high expectations for each]. São Paulo: Fundação Santillana. [online] [Accessed on 3 April 2021] Available from: https:// drive.google.com/file/d/1ugJlI114OIUTYw1JKpLWCPSG39BMMr-R/view. Runswick-Cole, K. 2011. Time to end the bias towards inclusive education? British Journal of Special Education. [online] [Accessed on 13 April 2021] Available from: https://blogsomemoore.files.wordpress.com/2016/07/ruswick-cole-k-20111.pdf UNESCO. 2020. Global education monitoring report, 2020: Inclusion and education: all means all. [online] [Accessed on 9 January 2023] Available from: https://unesdoc.unesco. org/ark:/48223/pf0000373718 Unicef. 2018. Iraq Education. [online] [Accessed on 14 March 2021] Available from: www. unicef.org/iraq/what-we-do/education United Nations. 1994. Salamanca statemen and framework for action on special needs education. Salamanca. [online] [Accessed on 3 February 2021] Available from: www.european-agency. org/sites/default/files/salamanca-statement-and-framework.pdf. United Nations. 2016. Committee on the rights of persons with disabilities general comment No. 4 on the right to inclusive education. [online] [Accessed on 3 February 2021] Available from: https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download. aspx?symbolno=CRPD/C/GC/4&Lang=en.

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29 A CERTAIN KIND OF FREEDOM, A CERTAIN SUBJECT OF RIGHT The Disability dispositif of Inclusion and the Government of the Disabled Child in the Italian Education System Francesca Peruzzo Introduction Even if written more than 30 years ago, the Convention of the Rights of the Child (CRC) (2006) is a still compelling document. The process of writing it was driven by the belief that all children should be living a fulfilling, safe, and happy life, and now, as then, it promotes equality and freedom, mindful of past processes of discrimination that too often led to children’s educational and other forms of exclusion and marginalisation. With specific reference to disabled children, the CRC maintains that ‘States Parties recognize that a mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community’ (Art. no. 23, 1). The states parties, signatories of the Convention, are to ‘promote social progress and better standards of life in larger freedom’ (Preamble), and a designated committee of each state party should report on progress, implications, and complications arising from the enactment of the Convention. Twenty years later, Italy ratified the Convention on the Rights of Persons with Disabilities (2006) (CRPD) through Law No. 18/2009, with Article 24, as the ‘first international legally binding instrument to contain a reference to the concept of quality inclusive education’ (Ferri 2017, p. 5). Article 24 specifically proclaims the right to inclusive education at all levels, directed to ‘the full development of human potential and sense of dignity and self-worth . . . and fundamental freedoms and human diversity’. By understanding freedom as being able to ‘decid[e] for oneself what is one’s own good and not being ruled by external constraints’ (Montà et al. 2020, p. 6), the two Conventions promoted freedom in different forms: freedom of 520

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choice and a dignified life, expression, self-development, participation in the community, and equality in society in general. These different forms of freedom, enshrined in the Conventions, build, on the one hand, on soft law, such as the Jomtien World Declaration on Education for All (UNESCO 1990), the United Nations Standard Rules on Equalization of Opportunities for Persons with Disabilities (United Nations 1993), and the Salamanca Declaration and Framework for Action (UNESCO 1994) (Ferri 2017); on the other hand, they are results of years of struggles of children identified as having special educational needs and disability and their families against exclusion and institutionalisation, inequality in access to resources, and in having a voice in life in their education matters. It was their struggles that enabled, well before the ratification of the two Conventions, to make Italy a pioneer in inclusive and equal policies and practices in education, dismantling all special schools with Law No. 517 in 1977 and including all disabled children in mainstream classrooms, inaugurating the progressive inclusive approach of integrazione scolastica (Lauchlan and Fadda 2012; Canevaro et al. 2009). These struggles, as commended by the CRPD Committee in the ‘Concluding Observations on the Initial Report of Italy’ (2016), were followed by three decades of enactment of inclusive policies ‘striving to implement an inclusive system free of segregation’ (point 4). However, despite the increased ‘protection’ of freedom, equality, self-development, and rights to inclusive education, both the CRC and CRPD Committees highlighted flaws and contradictions in the enactment of freedoms and inclusive education for children identified as disabled or with special educational needs. On the one hand, the CRPD Committee, in the ‘Concluding Observations on the Initial Report of Italy’ (2016), referred to the lack of monitoring laws on the enactment of inclusive education, including quality of teaching support and provisions towards equitable education for children with disabilities. On the other hand, the 2019’s report of the Gruppo di Lavoro per la Convenzione sui Diritti dell’Infanzia e dell’Adolescenza (2019) (hereafter CRC Group), an umbrella organisation gathering NGOs and working groups which produce a monitoring report on the CRC yearly, highlighted how the Italian government’s cuts to education funding constantly compromise equality of opportunities, participation, and freedom to self-development of children that are identified as disabled or with special educational needs; 5% of families of disabled children in primary and lower-secondary school have appealed against the lack of specialised support, with ‘local authorities trying to fill vacant positions, or deploying teachers without a specialist qualification, or with qualifications, but minimal experience’ (Devecchi et al. 2012, p. 178). Other studies highlight the widespread forms of micro-exclusion in schools through withdrawing from the regular classroom (D’Alessio 2011) and the isolation of specialist teachers in arranging provisions for children identified as disabled or having special educational needs (Caldin 2012). Moreover, as the CRC report (2019) alarmed, bullying and violence are on the rise, most likely led by a lack of understanding of diversity. These ongoing problems hinder the enactment of the Conventions and raise questions on whether equality, freedom, and inclusion could be thought, done, and taught differently. Foucault and his post-structural tools offer some possibilities. In 521

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this chapter, I intend policy and rights to education of disabled children differently and show how the enactment of policies that followed the Conventions’ rationales are mobilised by a dispositif of power and knowledge relations (Foucault 1994) as an apparatus that frames the government of disability and children identified as having special educational needs in education. I use the terminologies special educational needs and disability while aware of its contentious meaning. I am strongly in agreement with the increasingly vocal campaigns to cease to use it as it singles out children on the basis of a deficit understanding of bodily (and linguistic, cultural, and economic) differences. However, while this chapter criticises these performative labels, it analyses policies and legislation that contain and mobilise such labels; hence, changing the phrasing would nullify the analysis. Throughout the chapter, I will use the phrase ‘identified as having special educational needs’ and ‘identified as disabled’ to make visible both the discursive role of such categories and divisions and the silencing of children’s accounts when it comes to naming and being named in educational matters that involve them directly. By exploring the micro-practices of inclusion in schools, I illustrate how this dispositif mobilises an educational norm that produces disability and disabled subjectivities through strategies and practices of power, making concepts of equality, inclusion, self-fulfilment, and freedom intelligible and enactable through specific economic and medical knowledges, thus sidelining the political of disability. In our present, rights represent the only viable means whereby disabled children are ensured a place in mainstream education. However, despite acknowledging that change must be systemic (D’Alessio 2013; Migliarini et al. 2020), are rights and current understanding of freedom and inclusive processes enough to enable the free ethical formation of disabled bodies as part of the diversity of human beings? The dispositif enables to show how truths are written on bodies and are always localised and contingent (Armstrong 2002; Pillow 2015) and how processes of self-development are more a matter of ethical engagement with oneself (Allan 2015; Foucault 1990; Infinito 2003; Montà et al. 2020). In the conclusive part of this chapter, I thus foreground a discussion on freedom and ethics of diversity in Italian education, arguing that the dispositif can enable a different conception of freedom as care of the self and others and open different paths to equality of opportunities and subjective freedom.

A Long History of Policies for Freedom and Equality Between Integration and Inclusion In Italy, Law No. 517 in 1977 became one of the turning points for the history of disabled students and education. Its enactment abolished all differentiated classes and special schools, promoting ‘the integration of students portatori di handicap (carriers of handicap) with the provision of specialised teachers’ (Tortello 1999, p. 2). At that time, the discourse of integration triggered a series of disciplinary and regulatory processes, practices, and dispositions. To manage increased diversity of needs in the classroom, the Ministerial Circular No. 258 in 1983 formulated the individualised education plan (PEI), introducing a ‘functional diagnosis’ that integrated a medical diagnosis, a child’s relational and cognitive capacities, and school, family, and social 522

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resources available. The right to education, equality of opportunities, and self-fulfilment, as well as the entitlement to compensation for disabled students, became comprised within those benefits assigned through the welfare distributive category of need (Armstrong 2003). In the period that followed the ratification of the CRC in 1991, the legislation on inclusion intensified, beginning with the Framework Law in 1992, milestone of integrazione scolastica (D’Alessio 2011), which ensured disabled pupils the right to access and participation at all levels of education and evolved in a stratified legislative approach to ensure equalities of opportunities in mainstream schools. The Framework Law No. 104 in 1992 defined, and thus singled out, disabled people as individuals ‘with a stabilised or progressive physical, psychological or sensorial impairment, which is the cause of learning, relationship or work integration difficulties that determine a process of social disadvantage or marginalisation’ (Art. 3). In order to enact an ‘inclusive culture’, however, children identified within these categories are to submit a medical certification issued by a National Health Authority which gives them the right to the PEI towards their effective inclusion through specific interventions according to their individual condition. Law No. 170/2010 extended the logics of a personalised plan to children diagnosed with specific learning difficulties, introducing the Personalised Didactic Plan (PDP) and prescribing teachers to develop an individualised plan including compensatory and dispensatory measures, pedagogic support strategies, and individualised assessment (Dainese 2015). Following that, the Directive of 27 December 2012 called ‘Intervention Tools for Pupils with Special Educational Needs and Disabilities and Territorial Organisation for Educational Inclusion’ and the Ministerial Circular No. 8 in 2013 brought the terminology of inclusion in the legislative registry, identifying disability as a subcategory of special educational needs and requiring schools to compile an annual inclusive plan. Lastly, the ‘Buona Scuola’ Decree No. 66 in 2017 enacted the Annual Inclusion Plan (PIA) as a whole-school measure to ensure the inclusion of children identified as disabled or with special educational needs in the school community and to actively promote the diversity of children’s conditions within the classroom. The ‘Buona Scuola’ Law also introduced the International Classification of Functioning Disability and Health (ICF) (WHO 2001), affirming that the socio-cultural context is a determinant factor for the development of well-being and health conditions of children identified as disabled or with special educational needs. However, despite the deluge of legislation being produced to effectively promote and enact inclusion of children identified as disabled or as having special educational needs in Italian mainstream classrooms, a number of problems continue to linger. The special education pedagogists are still debating the difference and sometimes using interchangeably the words integration and inclusion (see D’Alessio 2011, 2013, 2018), affirming how the regimes of practices underpinning ‘integrazione scolastica’ reflect ideals of ‘special normality’ (Ianes 2006), which considers children with disability and special educational needs as differences in a diversified whole (Salis 2018). On the other hand, rights to education, freedom, and equality of disabled children are still granted on the basis of a medical diagnosis, as worryingly pointed out by a number 523

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of disability studies scholars (Bocci 2021Gaspari 2016). This process of medicalisation increasingly defines also the situation of children deemed to be at a disadvantage (Dainese 2015), in particular following the umbrella division operated by the Directive of 27 December 2012. This process is distorting the aims of the ICF (WHO 2001) and beginning to materialise disabling/processes of ‘SENitization’ (Migliarini et al. 2019, 2020) of children from disadvantaged socioeconomic backgrounds, such as refugees, asylum-seekers, and second-generation students. Given these lingering problems, to assess how the CRC and CRPD have been upheld in Italy, perhaps it might be useful to shift the discussion from the results of policies in granting freedom, equality, and rights to the ontological and epistemological premises which mobilise processes of policies enactment and identify certain children as disabled and with special educational needs.

A Field of Government and the Production of Subjects: Dispositif of Power and Rights The idea of freedom and rights enshrined in the CRC and CRPD, and their enactment through national legislation, is proper of a humanist and liberal thinking legacy of the Enlightenment, which drives our understanding of the ways in which we go about our everyday life (St Pierre 2000). It conceives human beings as rational subjects, responsible for their own self-development (Popkewitz and Brennan 1998; Usher and Edwards 1994). Liberal thinking underpins two epistemological positions in education in Italy: the liberal-functionalist and the Marxist-conflictualist (Hunter 1996). The former describes most of the Italian special pedagogy approaches to integrazione scolastica and sees the subject, the human, as endowed with ‘natural’ abilities (Armstrong 2002) and capacities that need only to be discovered and nurtured. Freedom is understood as intrinsically part of a self-development and self-fulfilment process, and education is needed to unleash subjects’ inner potential. Here, special pedagogy approaches to equality and inclusive education look at ‘assessment of learning potential . . . to establish what pupils are able to do on their own and what they can do with help (their potential development level)’ (Sandri 2014, p. 102). Examples of these positions are studies that look into disabled students’ selfdevelopment by ameliorating existing provisions and ‘doing special education better’ (e.g. Canevaro et al. 2009; Pavone 2014). Here, the focus is on a subject as divergent from a norm, thus questioning only to certain extent the given context, with the state as guarantor of fundamental rights (Armstrong 2003; D’Alessio 2013). The Marxist-conflictualist doctrine instead is built on an understanding of the disabled child as an ‘oppressed subject’ by structural (state and social) conditions and argues that ‘progressive social change and the full democratisation of social life’ (Bowles and Gintis 1976, p. 24), the end of exclusions, and the empowerment of free subjects can only happen if education is challenged in its role of reproducing inequalities (D’Alessio 2011; Hunter 1996; Tomlinson 2017). Here, freedom is considered in ‘quantitative terms’ (Dean 2010) and as integral to processes of ultimate liberation undertaken by the subject that education, under its changed conditions, can allow 524

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(Hunter 1996). Marxist-influenced positions, such as the ones of Italian disability studies scholars (D’Alessio 2011; Medeghini et al. 2013), denounce ‘practices of exclusion, discrimination, and oppression to which disabled people are subjected’, uphold inclusion and systemic changes, yet do not challenge ‘the Western standard of the subject, defined as rational subject able to make his or her own choices’ (Winance 2016, p. 102). When it comes to disability and inclusion, these approaches consider both the historical process of inclusion of disabled students as a linear narration of freedom and self-fulfilment yet do not question the ontological existence of disability (Youdell 2006), which is what is to be included and where (Graham and Slee 2008). Foucault’s post-structural approach rejects ideas of essential, pre-given, agentic subjects in conceptualising freedom and equality. No subject is prior to power; rather, it is constituted through regimes of practices mobilised by certain contingent and context-laden truths that shape subjects’ identity, which both subjugate individuals and make them subject to certain relations of power and knowledge (Foucault 1982). Power here is material, relational, and exerted, and it produces (disabled) individuals by decentring the humanist subject and making them visible (objectified) through a contingent and context-bound norm. This norm operates within what Foucault (1994, p. 299) calls a dispositif, meaning, a heterogeneous combination of ‘practices, discourses, institutions, architectural edifices, regulatory decisions, laws, administrative measures, scientific pronouncements . . . both things that were spoken of [disability] and that were not’. Within the disability dispositif in education, this norm materially arranges emotions, pedagogies, practices, and policies, and it enables some (disabled) subjects to be made visible, objectified, and therefore better governable and self-governable (subjectified). Therefore, the series of inclusive policies which are meant to uphold the right to education and practices geared towards students’ freedom and equality of opportunities, while enabling education of all children in the same classroom, also singled out their differences. Through these policies and classifications, the norm has a regulatory effect on the school population as a whole (biopolitics) and a disciplinary effect on the self-government of individuals (biopower) through micro-techniques to manage, shape, and make education subjects pliable and productive (Foucault 2004; Ball 2013). Given these premises, the disability dispositif can be defined as an analytical and diagnostic device that enables the critical problematisation of the taken-for-granted, mundane practices of education that reproduce the child identified as disabled or with special educational needs as the other of the educational norm. It looks into, connects, and elicits micro-practices of power and knowledge that simultaneously make and control difference in the educational context and, ultimately, in the state. Most crucially, the Foucauldian dispositif brings in the workings of power relations in special education’s perspectives on disability and difference. It restores the political dimension of pedagogy, assessment, and curriculum, making the education community reflect on the indissoluble connection between teaching and learning practices and their intrinsic connection with national policies and legislation and, ultimately, with international conventions, such as the CRC and the CRPD. Thus, in the remaining part of the chapter, I look into the arrangements and micro-practices of the enactment of the CRC, CRPD, and 525

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national policies that the disability dispositif enables in Italian schools. The aim is to diagnose, and then rethink, the workings of the norm in producing certain notions of rights, freedom, equality, inclusion, and subjective positions.

A Certain Kind of Freedom: A Dispositif to Make the Disabled Subject in Education Between Rights, Inclusion, and Normalisation Foucault’s analysis of ‘medicine, madness, and discipline and punishment have relevance to the experiences of children with SEN[D]’, Allan (1996, 220) argues. Foucault (1977) suggests that, to observe the work of the norm in shaping and managing certain education subjects, what needs to be assessed are the micro-practices in the classroom and how these arrange the dispositif and govern the freedom of such subjects towards certain inclusive aims. The norm, in fact, with its disciplinary power, ‘seeks to bind [forces] together in such a way to multiply and use them’, effectively putting all pupils in the same classroom, however, rather than organising ‘all its subjects into a single uniform mass, it separates, analyses, differentiates . . . to the point of necessary and sufficient single units’ (Foucault 1977, p. 170). This double operation of the norm, which both mainstreams and individualises, enables the management of the child identified as disabled or with special educational needs, their freedom to self-development, and equality of opportunities along three disciplinary strategies which Ball (2013, p. 41) aptly defines as ‘the pedagogic machine’:   i objectification and surveillance through medical, social, and pedagogic services;   ii subjectification through self-development and self-fulfilment; and iii rehabilitation towards a state of (social) normality to overcome the condition of marginality and upholding equality. i

Objectification and surveillance through medical, social, and pedagogic services.

The first strategy of this pedagogic machine implies to make children identified as disabled or with special educational needs visible, objectifying their (dis)functionalities, and build a network of surveillance, which works as a mechanism that coerces by means of observation; an apparatus in which the techniques that make it possible to see induce effects of power, and in which, conversely, the means of coercion make those on whom they are applied clearly visible. (Foucault 1977, pp. 170–71) To assess the functionalities and capabilities of the child identified as disabled or with special educational needs, as stated by Law No. 104/92 and modified by the recent Legislative Decree 66/2017, prior to the child enrolment to school, the disabled child (and their family) is asked to provide a certification of invalidity to the National Institute for Social Security, which ascertains the degree of disability. 526

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Following that, a document called Profile of Functioning of the child is produced by a multidisciplinary evaluation team, which comprises a medical specialist (or an expert in the health condition of the child), a specialist in infantile neuropsychiatry, a rehabilitative therapist, and a social worker or a representative of the local authority. This document, which follows the guidelines of the ICF (WHO 2001), is propaedeutic and necessary to prepare the child’s individual project and PEI. It defines the child’s abilities and the type of support measures and structural resources needed to enact inclusive education, and it is written in collaboration with the family of the child identified as disabled or with special educational needs and a representative of the school administration. Moreover, it is updated each year and/or when the ‘functioning conditions’ of the child change. Thirdly, the school compiles the PEI, which is written and approved by the child’s teachers (specialised teacher and the mainstream teacher together, with more responsibility on the former), with the participation of the family (or tutors/carers responsible for the child), of other external professional figures that will work with the child and the class during the school year, and of the multidisciplinary assessment unit. The PEI takes into account the profile of functioning in identifying tools, strategies, and modalities to arrange the child’s learning context, considering the relational, social, interaction, communication, and autonomy dimensions; it identifies the individualised pedagogical and assessment strategies as well as the modalities to enact and coordinate them. Compiled at the beginning of each school year, it is periodically re-assessed throughout the year to check whether integration or modifications should be introduced. Students with learning difficulties, following Law No. 170/2010, are provided with individualised pedagogy, curriculum, and assessment through the PDP, including the possibility to resort to technologies and alternative learning tools and strategies, including compensatory and dispensatory measures. By means of these complex individual plans, objectification, and surveillance, the coercive techniques of power enable visibility and, therefore, governability as certain subjects through a regulatory ‘typological obsession [for] identification, categorization, labelling and monitoring’ (Armstrong 2002, p. 442). While creating the categories, the layered intersection of tactics of observation, evaluation, and socio-medical pedagogical assessment materialises a record of the subject identified as disabled or with special educational needs so that the medico-psychosocial team, in concert with general and specialised teachers and other education personnel, could pursue a personalised, educational, and didactic programme of therapeutic and rehabilitative interventions. ‘The role of special educational professionals is to diagnose students’ levels of disability, and then to provide, according to their special needs, individual programmes [mostly] outside the normal educational provision’, as Slee (1999, p. 196) encapsulates it and recent studies disquietingly illustrate (Caldin 2012; Canevaro et al. 2011). The PEI makes disability visible as a disadvantage in a clinical file (Foucault 1973), medicalises the child (Gaspari 2016), and objectifies the child who does not comply with the normal, mundane school practice, while also enabling their inclusion within the mainstream classroom. Medical and special pedagogical knowledges not only depoliticise those practices 527

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but also enable again the nominalist creation of differences as part of those ‘rituals of power’ and ‘ceremonies of objectification’ (Ball 2013, p. 68) constitutive of the ‘being in’ an education system. The PEI (and the PDP), while intending to address questions of freedom and equalities of opportunities and enacts right to education, both creates children identified as disabled or with special educational needs as problems and tries to fix them. It does so by introducing children identified as disabled or with special educational needs into fields of documentation that makes it possible to then train or correct, classify, normalise, or exclude them (Allan 1996; Foucault 1977), as recent research by Goodley et al. (2020) and Migliarini et al. (2020) continues to show. Government’s policies and schools’ documentation then become part of a governmental reason in which inclusion is secured by ‘the expert’ as the guarantor of order and representative of a ‘powerful systems of knowledge who imposed order upon an unruly world’ (Slee 1999, p. 196), operating as part of a normalising regime of practices that works simultaneously through restraining the body and cultivating the character in the interest of social stability. In this individualising network of control and surveillance, children identified as disabled or with special educational needs continue to be defined in relation to normality (Allan 1996), with their freedom and space of self-government shaped by medicalising truths and specialised experts, which translate compensatory and dispensatory measures in means to freedom towards self-fulfilment. ii Subjectification through self-development and self-fulfilment. Certifications of functioning, individualised education plans, and specialised teachers make disabled bodies and selves ‘the place[s] where the most minute and local social practices were linked up with the large-scale organization of power’ (Dreyfus and Rabinow 1983, p. 111). Foucault (1977, p. 25) maintains that a body’s constitution as ‘labour power is possible only if it is caught up in a system of subjection’ (in which ‘need’ becomes a political instrument meticulously created, calculated, and used). Children identified as disabled or with special educational needs are to become ‘protagonist of their growth’, and whilst a discourse of rights promises them a life as ‘full citizens’ through education, the PEI becomes a field of government in which their self-development and freedom are geared towards a certain acceptation of a deficit subjectivity through processes of subjectification. The PEI creates and manages a very specific kind of freedom within a medico-pedagogical space of government, and it allows a concerted use of power to surveil the child, to rehabilitate them towards productivity, and to simultaneously work on their selves to maintain a desirable (secure) social order. As Armstrong (2003, p. 242) aptly points out, ‘the emphasis is . . . rather one of drawing human need into the framework of social control’. The norm here works on moralisation of subjects and management of desire through the potential of self-development and self-fulfilment. Going back to the certain kind of autonomy that is expected from subjects, Dean (2010, p. 43–4) neatly puts it: [T]he forms of identity promoted and presupposed by various practices and programmes of government . . . elicit, promote, facilitate, foster and 528

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attribute various capacities, qualities and statuses to particular agents. They are successful to the extent that these agents come to experience themselves through such capacities (e.g. rational decision making), qualities (e.g. having a [disability]), and statuses (e.g. being an active citizen). Much of the problem of government here is less one of identity than one of identification. Practices shape subjects’ desire towards self-fulfilment in the space for freedom opened by the medical notion of functionality (WHO 2001), then making pliable subjects of SEND through psycho-medico-pedagogical practices. Increasingly, subjects are not simply ‘externally’ regulated by ‘objectifying’ power/knowledge practices (Usher and Edwards 1994) but rather regulate themselves through ‘subjectifying’ practices, ways of conduct and thinking of themselves. Moreover, the teacher, through developing the PEI, is also the one in charge of practically encapsulating ‘the most reliable indicator of pupil’s potential and a meaningful predictor of possible future outcomes’ (Sandri 2014, p. 102), projecting the present into a future still framed by the medicalising and deficit understanding shaped by the dispositif (see also Burch (2018) for a similar analysis of the 2014 SEND Code of Practice in England and Wales). This mechanism successfully defines a very specific trajectory, which ‘rarely comprise any question of asking students classified as disabled of what they want’ (Armstrong 2003, p. 242), worryingly leaving the child with very little choice or expression on their own present and future aspirations. Or conversely, they do elicit children’s voices, but within a very specific framework that unintentionally enables them to narrate themselves only as disabled or as being in need (see a certain use of narrative approaches, for example, Salis 2018). iii Rehabilitation towards a state of (social) normality to overcome the condition of marginality and upholding equality. Besides the concerted surveillance and processes of subjectification of the child identified as disabled or with special educational needs, a series of layers of control operate here with the PIA to evaluate social and economic conditions and coordinate resources to enact inclusion within school contexts. However, from the analytical perspective of the dispositif, the PIA does little to ‘the civil and social growth of the whole community’ (Sandri 2014, p. 96), and it is more sort of ‘regime of internal control’ (Gewirtz and Ball 2000, p. 254), which, as Armstrong and Barton (2008, p. 10) aptly put it makes no requirement for the school to effect radical change in its culture and organisation because the expectation is that the child is accommodated to existing structures and practices or—at best, if organisational and pedagogical adjustments are implemented, they take place around the individual child or group of children identified as in need. In a historical moment in which resources are scarce, if the focus is on the management of each child identified as in need, the financial requests will always exceed the resources available, continuing to reproduce the disability dispositif as a network 529

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constantly underfunded. This is a problem loudly called out by Italian disability studies scholars that frame the current inclusive approach as based on an ‘assistential’ and, therefore, expensive categorisation of individuals on the bases of their needs (D’Alessio 2013). On the other hand, the individualised gaze on the child identified as disabled or with special educational needs does not allow for diversity as an ethical approach to thrive in the classroom. This analysis questions Lascioli’s (2014, p. 59) considerations about ‘the norm no longer being an education category’ as ‘the current educational system is being organised to answer to the educational needs of everyone’ and also disputes the concept of ‘special normality’ coined by Ianes (2006). The only way in which diversity can be in the classroom is by being disciplined through a PEI or PDP that does not give much choice to the student than to be disabled or have special educational needs. This perspective has indeed serious implications for the modalities of the CRC and CRPD, in particular, in terms of the right of children to develop their personality, talents, mental, and physical abilities to their fullest potential (CRC Article 28b) and for how inclusion has been enacted within the Italian education system (CRPD Article 24). This narrow and medicalising construction of difference through the PEI questions the linear, progressive nature of history in the enactment of inclusive education and children’s freedom to be. A secure dispositif of authorities is created around the child that mutually constitutes it as disabled while operating surveillance of diversity and continuing checking that this difference is maintained. The dispositif of disability here ensures that SEND children are within the mainstream classroom; however, the workings of a certain educational norm continue to reproduce non-conformity through the PEI, whereby dividing practices of disabled and non-disabled students are continuous reminders of who is the other of citizenship. These processes, currently described as promoting equality of opportunities, shaped the SEND child selfdevelopment and freedom towards embracing certain subject positions in society to become productive citizens while casting them as non-conforming subjects of deficit.

Certain Equality, Certain Freedom, Certain Diversity, and the Ethical Way A post-structural diagnostic and analytical approach to the right of freedom, participation, and self-fulfilment of disabled children does elicit a grim picture. The dispositif, as a complex apparatus that objectifies and subjectifies the SEND child, shows how the workings of the norm in education • •

• •

shape inclusion and equalities of opportunities by means of categorisation and surveillance; use concerted compensatory and dispensatory measures to gear self-fulfilment and individual freedom towards a well-defined deficit and medicalised understanding of diversity; allow participation and freedom of expression through the voices of experts; and frame participation in the community and diversity within certain defined positions that do not allow for subjective fluidity and subjective freedom. 530

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This analysis frames the enactment of the CRC and CRPD as still far from reaching their objectives of equality and freedom. It shows how the rhetoric of diversity and the enhancement of all differences do not hold when difference is medicalised and pathologised as defective. First, it favours processes of epistemic injustices (Fricker 2007), in which individuals, citizens, different from the norm are taken less seriously in state decisions (examples of this can still be found in the limited right to vote to disabled citizens in many countries). Second, it operates hideous wishy-washy, feel-good discourses (Armstrong et al. 2010) that systematically hide or, rather, take for granted processes of discrimination that children that do not conform to a certain norm, that are seen as never autonomous enough, face in the every day of schools. Ongoing discriminations, as Pillow (2015, p. 144) puts it, call for questioning ‘what is actualized and embodied through “equal treatment” ’ of the child identified as disabled or with special educational needs. The disability dispositif can do so by enabling a different diagnosis and analysis of the uses of freedom and meanings of rights. Foucault has been widely criticised for his understanding of subject’s formation as ‘trapped’ within this arrangement, and therefore leaving little space for agentic decisions. However, Foucault (1990) argues that the ethical dimension of the government of the self offers a space within which subjects may actively work on a process of self-formation and challenge the present regime of government of special educational needs and disability. He maintains that individuals can eschew scientific classifications and legislative pronunciations in their self-formation and resort to ethical strategies that foster practices of care for their own selves and for others. Freedom here coincides with the act of critique of the epistemic limits imposed by the dispositif, with education being the set of codes and pedagogical practices that enable such processes within the classroom and beyond (Infinito 2003). This implies to challenge disciplinary divisions, such as special and regular pedagogy, which is the promising direction some disability studies scholars are embracing (Bocci 2021; Peruzzo 2021). A focus on ethics as the encounter of freedom and politics restores the political dimension of education, but also, as Montà et al. (2020) remark, it stimulates critical reflection and self-mastery as crucial skills in asserting power in processes of decision-making that are part of the citizens’ commitment towards equal and flourishing societies. It equips children with critical understanding of their own position; it invites them to problematise what they are, what surrounds them, and to react, resist, refuse injustices and mundane, taken-for-granted micro-violence that power and knowledge relations exert upon their bodies. But also, it enables them to follow their desires, not necessarily by narrating their disabled selves, but by imagining how ethical approaches to teaching and learning can elicit for them new becomings, what Allan (2015, p. 281) illustrates in her study of ‘inclusion as an ethical project’. Not only what is now defined as disabled or with special educational needs will become part of the diverse modalities of being subjects of education and rights, but also, as Montà et al. (2020, p. 11) poignantly put it, ‘active citizenship requires an explicit and aware educational process’, where citizenship can become the ‘space where the educational dimension and the political dimension get together’. Here, 531

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rights will enable to rethink what kind of equality is promoted if based on medicalisation of bodies. They can help open a safe space to nurture the creation of societies in which the boundaries of the dispositif, as a network of coercive processes of subjectivation of subjects, can constantly be challenged, questioned, and trespassed. Here rights will be the strategies, the tactics of power to enable the child identified as disabled or with special educational needs, and indeed, the whole school community, to challenge the dispositif, because rights will create a respectful, critical, and powerful space for doing so. Therefore, through the deployment of the dispositif as an analytical and diagnostic tool, it becomes possible to reflect and critically re-act on the enactment of the CRC and CRPD. By post-structurally decentring the subject of disability and special educational needs and questioning the humanist and liberal doctrines when it comes to equality, rights, and freedom, the dispositif does not give policy answers. But it crucially shows how education ‘can play a role both in the constraining processes of normalisation and in the productive processes of self-creation and freedom’ (Infinito 2003, p. 159), shaping the conditions for ethical work of care of the self and others as the foundation of an engaged, participated, and subjectively free and diverse citizenry.

The uncontextualised categorisation of diversity in the classroom has serious implications for the enactment of inclusion and thriving of all children. In Italy, children identified as disabled, as having learning difficulties and developmental disabilities, and children coming from a social, cultural, economic, linguistic disadvantage are categorised as ‘Children with Special Educational Needs’. Despite recent inclusive policies dispositions that take the school context into account, processes of inclusion are still individualising diversity from a norm and construct such children through a deficit understanding of diversity. Children’s subjective and identity self-formation is central in the enactment of inclusive education. Practices of categorisation through medical knowledge and their current deficit understanding of disability and special educational needs work on children’s understanding of themselves and behaviour as certain citizens with individual pathological shortcomings. These processes seriously question our ideas of freedom and equity, and democracy in education and beyond and call for professionals and researchers to listen to children’s accounts. Inclusive enactment of the CRC and CRPD necessarily involves a serious rethinking of the educational apparatus that governs children’s experience of schooling. Inclusive education can thrive through a different approach to education policy which, instead of drawing upon incremental policy changes, favours local resources and situated pedagogical and curricular expertise to provide educational experiences to children that benefit and learn from diversity of bodies and minds in the classroom.

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References Allan, J. 1996. Foucault and special educational needs: A ‘box of tools’ for analysing children’s experiences of mainstreaming. Disability & Society 11(2), pp. 219–234. Allan, J. 2015. Inclusion as an ethical project. In S. Tremain, (ed.), Foucault and the government of disability. Michigan: University Press, pp. 281–297. Armstrong, A. C., Armstrong, D. and Spandagou, I. 2010. Inclusive education. International policy and practice. London: SAGE. Armstrong, D. 2003. Experiences of special education: Re-evaluating policy and practice through life stories. London: RoutledgeFalmer. Armstrong, F. 2002. The historical development of special education: Humanitarian rationality or ‘wild profusion of entangled events? History of Education 31(5), pp. 437–456. Armstrong, F. 2003. Difference, discourse and democracy: The making and breaking of policy in the marketplace. International Journal of Inclusive Education 7(3), pp. 241–257. Armstrong, F. and Barton, L. 2008. Policy, experience and change and the challenge of inclusive education: The case of England. In L. Barton and F. Armstrong (eds.), Policy, experience and change: Crosscultural reflections on inclusive education. Dordrecht: Springer, pp. 5–18. Ball, S. J. 2013. Foucault, power and education. New York: Routledge. Bocci, F. 2021. Special pedagogy as inclusive pedagogy. An instituting dialectic between risks and opportunities. Italian Journal of Special Education for Inclusion 9(1), pp. 41–48. Bowles, S. and Gintis, H. 1976. Schooling in capitalist America. Chicago: Haymarket Books. Burch, L. F. 2018. Governmentality of adulthood: A critical discourse analysis of the 2014 special educational needs and disability code of practice. Disability & Society 33(1), pp. 94–114. Caldin, R. 2012. Alunni con disabilità, figli di migranti. Approcci culturali, questioni educative, prospettive inclusive [Students with disability, migrants’ children: Cultural approaches, educational questions, inclusive perspectives]. Napoli: Liguori. Canevaro, A., D’Alonzo, L. and Ianes, D. 2009. L’integrazione scolastica degli alunni con disabilità dal 1977 al 2007: Una ricerca attraverso lo sguardo delle famiglie e delle persone con disabilità [Integrazione scolastica of students with disability from 1977 to 2007: A research through the perspective of people with disabilities and their families]. Bolzano: University Press. Canevaro, A., D’Alonzo, L., Ianes, D. and Caldin, R. 2011. L’integrazione scolastica nella percezione degli insegnanti [Integrazione scolastica from the perception of teachers]. Trento: Erickson. Convention on the Rights of Persons with Disabilities and Optional Protocol 2006. [online] [Accessed on 12 April 2022] Available from: www.un.org/disabilities/documents/convention/convoptprot-e.pdf. Convention on the Rights of the Child. 1989. [online] [Accessed on 12 April 2022] Available from: www.ohchr.org/en/professionalinterest/pages/crc.aspx CRPD Committee. 2016. Concluding observations on the initial report of Italy. [online] [Accessed on 12 April 2022] Available from: ttps://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download.aspx?symbolno=CRPD%2fC%2fITA%2fCO%2f1&Lang=en D’Alessio, S. 2011. Inclusive education in Italy: A critical analysis of the policy of integrazione scolastica. Rotterdam/Boston/Taipei: Sense Publishers. D’Alessio, S. 2013. Inclusive education in Italy: A reply to Giangreco, Doyle and Suter (2012). Life Span and Disability 16(1), pp. 95–120. D’Alessio, S. 2018. Inclusion in Italy: How supposedly inclusive policies fail. Commentary #22 inclusive education Canada. [Online] [Accessed on 28 November 2021] Available from: https://inclusiveeducation.ca/2018/03/13/inclusion-in-italy-how-supposedlyinclusive-policies-fail/ Dainese, R. 2015. La direttiva sui bisogni educativi speciali: Il piano didattico personalizzato potrebbe essere efficace se . . . [The directive on special educational needs: The personalised didactic plan would be effective if . . .]. L’Integrazione Scolastica e Sociale 14(1), pp. 72–79. Dean, M. 2010. Governmentality: Power and rule in modern society. London: Sage

533

Francesca Peruzzo Devecchi C., Dettori, F., Doveston, M., Sedgwick, P., Jament, J. 2012. Inclusive classrooms in Italy and England: The role of support teachers and teaching assistants. European Journal of Special Needs Education 27(2), pp. 171–184. Dreyfus, H. L., Rabinow, P. 1983. Michel Foucault: Beyond structuralism and hermeneutics. Chicago: University of Chicago. Ferri, D. 2017. Inclusive education in Italy: A legal appraisal 10 year after the signature of the UN convention on the rights of persons with disabilities. Journal of Theories and Research in Education 12(2), pp. 1–21. Foucault, M. 1973. The birth of the clinic: An archaeology of medical perception. London: Tavistock Publications. Foucault, M. 1977. Discipline and Punish: The birth of the prison. Vintage Books: New York. Foucault, M. 1982. The subject and power. Critical Inquiry 8(4), pp. 777–795. Foucault, M. 1990. The use of pleasure. Volume 2 of the history of sexuality. Vintage Books: New York. Foucault, M. 1994. Dicts et Ecrits (Tome 3: 1976–1979). Paris: Gallimard. Foucault, M. 2004. Society must be defended. Lectures at the College de France 1975–1976. London: Penguin books. Fricker, M. 2007. Epistemic injustice: Power and the ethics of knowing. Oxford: Oxford University Press Gaspari, P. 2016. Lo ‘Sguardo’ educativo contro I rischi della medicalizzazione: Il contributo dell’approccio narrativo [The educational ‘gaze’ against the risks of medicalisation: the contribution of the narrative approach]. L’Integrazione Scolastica e Sociale 15(4), pp. 419–427 Gewirtz, S. and Ball, S. J. 2000. From ‘Welfarism’ to new ‘managerialism’: Shift in discourses of school headship in the education marketplace. Discourse: Studies in the Cultural Politics of Education 21, pp. 253–268. Goodley, D., D’Alessio S., Ferri, B., Monceri, F., Titchkosky, T., Vadalà, G., et al. 2020. Disability Studies e Inclusione. Per una lettura critica delle politiche e practiche educative [Disability Studies and Inclusion: For a critical reading of educational policy and practices]. Trento: Erickson. Graham, L. and Slee, R. 2008. An illusory interiority: Interrogating the discourse/s of inclusion. Educational Philosophy and Theory 40(2) pp. 277–293. Gruppo di Lavoro per la Convenzione sui Diritti dell’Infanzia e dell’Adolescenza. 2019. 10 Rapporto di aggiornamento sul monitoragigo della Convenzione sui diritti dell’infanzia e dell’adolescenza in Italia. [Online] [Accessed on 21 February 2021] Available from: https:// gruppocrc.net/wp-content/uploads/2020/11/XIrapportoCRC2020_compressed.pdf Hunter, I. 1996. Assembling the School. In A. Barry, T. Osborne and N. Rose (eds.), Foucault and political reason: Liberalism, neo-liberalism and rationalities of government. London: UCL Press. Ianes, D. 2006. La speciale normalità [The special normality]. Trento: Erikson. Infinito, J. 2003. Ethical self-formation: A look at the later Foucault. Educational Theory 53, pp. 155–171. Lascioli, A. 2014. Verso l’inclusive education [Towards inclusive education]. Foggia: Edizioni del Rosone Lauchlan, F. and Fadda, R. 2012. The ‘Italian model’ of full inclusion: Origins and current directions. In C. Boyle and K. Topping (eds.), What works in inclusion? Maidenhead: Open University Press, pp. 31–39. Law 3rd March. 2009, no. 18. Ratification and execution of the United Nations Convention on the Rights of Persons with Disabilities, with optional Protocol, made in New York on 13 December 2006 and establishment of the National Observatory on the condition of persons with disabilities, (Published in Gazzetta Ufficiale on 14 March 2009, no. 61) Law 4th August. 1977, no. 517. Rules on students’ evaluation and abolitions of reparative exams, and other norms modifying the education system’ (Published in Gazzetta Ufficiale on 18th August, 1997, n. 224). Law 5th February. 1992, no. 104. Framework Law for the assistance, social integration and rights of handicapped people (Published in Gazzetta Ufficiale on 17 February 1992, n. 39). Legislative Decree 13th April. 2017, no. 66. Rules for the promotion of the scholastic inclusion of students with disabilities, in accordance with article 1, paragraphs 180 and 181,

534

A Certain Kind of Freedom, a Certain Subject of Right letter c), of the law 13 July 2015, n. 107 (Published in Gazzetta Ufficiale on 16 May 2017, n. 112, Ordinary Suppl. No. 23). Medeghini, R., D’Alessio, S., Marra, A., Vadalà, G. and Valtellina, E. (eds). 2013. Disability Studies. Emancipazione, inclusione scolastica e sociale, cittadinanza [Disability Studies. Emancipation, educational and social inclusion and social citizenship]. Trento: Erickson. Migliarini, V., D’Alessio, S. and Bocci F. 2020. SEN Policies and migrant children in Italian schools: Micro-exclusions through discourses of equality, Discourse: Studies in the Cultural Politics of Education 41(6), pp. 887–900. Migliarini, V., Stinson, C. and D’Alessio, S. 2019. ‘SENitizing’ migrant children in inclusive settings: Exploring the impact of the salamanca statement thinking in Italy and the United States. International Journal of Inclusive Education 23(7–8), pp. 754–767. Ministry of Education, University and Research. Ministerial Circular 6th March. 2013, no. 8. Personalisation and Personalised Study Plan, protocol, n.561 Ministry of Education, University, and Research. Ministerial Directive 27th December. 2012. Intervention Tools for pupils with Special Educational Needs and Disabilities and territorial organisation for educational inclusion. Ministry of Public Education. Ministerial Circular 22nd September. 1983, no. 258. Indications of lines of understanding between school, local authorities and UU. SS. LL. on the subject of scholastic integration of disabled pupils, protocol no. 8692. Montà, C. C., Carriera, L. and Biffi, E. 2020. The United nations convention on the rights of the child: A milestone for a pedagogical reflection on the meanings of childhood and democracy. SEÇÃ0 TEMÁTICA: Infância, Política e Educação 46, e239004 Pavone, M. 2014. L’inclusione educativa. Indicazioni pedagogiche per la disabilità [Educational inclusion. pedagogical indications for disability]. Milano: Mondadori Università. Peruzzo, F. 2021. A call to rethink the Global North University: Mobilising disabled students’ experiences through the encounter of critical disability studies and epistemologies of the South. Journal of Sociology, pp. 1–18. Pillow, W. S. 2015. Embodying policy studies: Feminist genealogy as methodology. In K. N. Gulson, M. Clarke and E. Petersen (eds.), Education policy and contemporary theory: Implications for research. London: Routledge, pp. 134–146. Popkewitz, T. S. and Brennan R. 1998. Foucault’s challenge: Discourse, knowledge and power in education. New York: Teachers College Press, pp. 203–226 Salis, F. 2018. Narrazione e inclusion. Il Digital Storytelling in classe per l’inclusione di alunni con Bisogni Educativi Speciali [Narration and inclusion: The Digital Storytelling in the classroom for the Inclusion of Students with Special Educational Needs]. RELAdEI (Educación Infantil y Familia) 7(2–3), pp. 171–181. Sandri, P. 2014. Integration and inclusion in Italy. Towards a pedagogy for inclusion. ALTER, European Journal of Disability Research 8, pp. 92–104. Slee, R. 1999. Policies and practices? Inclusive education and its effects on schooling. In H. Daniels and P. Garder (eds.), Inclusive education, world yearbook of education 1999. New York: Routledge, pp. 194–206. St. Pierre, E. A. 2000. Poststructural feminism in education: An overview. International Journal of Qualitative Studies in Education 13(5), pp. 477–515. Tomlinson, S. 2017. A sociology of special and inclusive education: Exploring the manufacturing of inability. Abingdon: Routledge. Tortello, M. 1999. Nuovi elementi di qualità per una scuola inclusiva [New quality elements for an inclusive school]. In D. Ianes and M. Tortello (eds.), Handicap e risorse per l’’ntegrazione [Handicap and resources for integration]. Trento: Erickson, pp. 327–329. UNESCO. 1990. Education for all: Meeting basic learning needs. Jomtien: UNESCO. UNESCO. 1994. The Salamanca statement and framework for action on special needs education. Salamanca: UNESCO. United Nations. 1993. Standard rules on the equalization of opportunities for persons with disabilities. New York: United Nations.

535

Francesca Peruzzo Usher, R. and Edwards, R. 1994. Postmodernism and education. Different voices and different worlds. London: Routledge WHO. 2001. International classification of functioning, disability and health. Geneva: WHO. Winance, M. 2016. Rethinking disability: Lessons from the past, questions for the future. Contributions and limits of the social model, the sociology of science and technology, and ethics of care. ALTER, European Journal of Disability Research 10, pp. 99–110. Youdell, D. 2006. Impossible bodies, impossible selves: Exclusions and student subjectivities. Dordrecht: Springer.

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30 SOCIAL JUSTICE AND LANGUAGE RIGHTS FOR DEAF CHILDREN Tom Humphries, Gaurav Mathur, Donna Jo Napoli, and Christian Rathmann Introduction All people have the right to language. This may seem obvious, but with regard to deaf children globally, the fundamental right to language is frequently not protected; language delay or deprivation among deaf children is pandemic. Ensuring the right to language for the deaf child entails providing access to a sign language. Here we develop paths to social justice for the deaf child. Biological characteristics have been used in measuring the worth of individuals. For deaf children, degradation of their bodies has dominated scientific discourse in discussions about nurturing, raising, and educating them (Roots 1999; Wrigley 1996). Evidence of harm done by false narratives about deaf children—narratives that present a pathological model in need of speech in order to have language—has often been ignored to the point that their lives are negatively impacted (Bird 2003; McKee 2008). Only within their affinity groups have deaf people been able to find refuge and safety (Ladd 2003; Padden and Humphries 2009). This chapter offers insights into the historical issues in protecting the rights of deaf children and ways to think about, address, and ensure these rights. We begin with an overview of the legal right to language, then develop arguments that language is a fundamental human right, using a framework of social justice and with an eye on the deaf child and sign languages. We glean support for our positions from testimonies of deaf children from four countries about their language experiences in the classroom, in the family, in friendships, and alone, simply contemplating the world. In our final section, we suggest how countries can successfully protect the right to language for the deaf child.

The Legal Right to Language The principle of compulsory education free of charge for all is included in the International Covenant on Economic, Social, and Cultural Rights. All countries have compulsory education, except Bhutan, Oman, Papua New Guinea, Solomon DOI: 10.4324/9781003056737-41

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Islands, and Vatican City. Since education cannot proceed without language, there is an implicit mandated legal right to language in the very provision of free public education (Humphries et al. 2013). Additionally, the Covenant recognises the right to the highest attainable standard of health, physical and mental, and, in particular, to the healthy development of the child. Since access to healthcare requires language, any actions the countries party to this covenant take to ensure health also form the basis for a legal right to language. International treaties and national laws often explicitly mention the right to language, noting that deaf children have the right to use their national sign language in educational and many other settings (see, for example, De Meulder et al. 2019; Pabsch and Wheatley 2012). In the text box we list some treaties and national laws as examples. In 2016, the World Federation of the Deaf (WFD) issued a position paper on the language rights of deaf children (WFD 2016). Among the 14 key points are: •

•

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Quality education in the national sign language(s) and the national written language(s) is one of the key factors for fulfilling the education and broader human rights of deaf children and adult deaf learners. Early exposure to sign language and multilingualism, combined with strong family support for sign languages, best prepares children who are deaf for their future effective participation in society. Governments must implement programs to support the teaching of sign language to family members and careers of deaf children, in co-operation with deaf communities and deaf sign language teachers.

This document and existing laws and treaties are grounded in research and can guide all countries to make the right to language explicit in their laws and codes. They can make new laws specific to this purpose or identify current laws/codes in various areas that can be argued to protect human rights and then modify them by adding statements recognising that language is a necessary precursor to assuring access to other human rights.

Language as a Fundamental Human Right The United Nations (UN) Universal Declaration of Human Rights of 1948 established the inalienability of human rights for ‘every member of the human family’, including children. The UN Convention on the Rights of the Child (1989) recognises that childhood is entitled to special assistance and care and that children must be assured freedom and dignity as part of their human rights. The UN Convention on the Rights of Persons with Disabilities (2006) is a comprehensive human rights treaty that establishes an international framework for legislation and policymaking among the member nations and internal to those nations in building inclusive societies. These conventions implicitly aim to protect the language rights of the deaf child, but few member nations have taken appropriate measures. In our final section we outline what those measures should be. 538

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The Right to Language Use Versus the Right to Language Among the rights of the UNCRPD is Article 9, ‘Accessibility’, which includes the right to access information and communication and to professional sign language interpretation. Article 21 protects ‘freedom of expression and opinion, and access to information’ via assuring that people can receive and impart information through ‘all forms of communication of their choice’. This includes the requirement that information for the general public should be provided in accessible forms and accessible technologies for persons with disabilities in a timely manner and without additional costs to them. Article 21 includes accepting and facilitating various modes of communication, including communication in sign languages. Further, Article 2 includes sign languages in the definition of language, and there are references to sign language in Article 24, ‘Education’, and in Article 30, ‘Participation in cultural life, recreation, leisure and sport’. Many children need their language-use rights protected. The hearing child whose family speaks a minority language may well benefit academically and psychosocially by being educated initially in the home language before transitioning to education in the majority language (García and Woodley 2014). That insight provides the rationale behind bilingual school programmes in many countries. Likewise, the blind child’s access to braille, audio descriptions, and audio systems, such as screen readers, is critical to academic achievement. In the case of deaf children, they need to have their right to language—that is, to having a language at all—protected (Grosjean 2001). Deaf children often do not have an accessible home language; about 95% of deaf children are born into hearing families (Mitchell and Karchmer 2004). Despite technological advances, such as cochlear implants, they usually do not have full access to the sounds of the ambient spoken language. Accordingly, sufficient input of spoken language is not guaranteed. If children are not exposed to a natural and accessible language frequently, they are at great risk of not acquiring a language fully, including its lexicon, grammar, and discourse principles.

Why the Right to Language Is a Fundamental Human Right Language is arguably the most important ability of humans. With language, we learn and achieve and understand our humanness. Consider first the process of learning, upon which achievement rests. We learn much from our immediate environment via our somatosensory system. But all information beyond what we can glean from our immediate environment comes via language. If we do not have language, we are cut off from that information and further learning. Sacks (1990, pp. 8–9) stated it memorably: [T]o be defective in language, for a human being, is one of the most desperate of calamities, for it is only through language that we enter fully into our human estate and culture, communicate freely with our fellows, acquire and share information. If we cannot do this, we are bizarrely disabled and cut off—whatever our endeavors, or capacities. 539

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This brings us to the question: How do we even come to understand our humanness? Human beings have the ability to recognise their own mental states—desires, beliefs, intentions, perspectives—and to realise that those mental states can be different from those of other human beings (Premack and Woodruff 1978). Again, we benefit from a memorable Sacks (2010, p. 240) quote: ‘Language, that most human invention, can enable what, in principle, should not be possible. It can allow all of us, even the congenitally blind, to see with another person’s eyes.’ Theory of mind (ToM) develops in children as language develops; by around 18 months old, toddlers who are raised with accessible language show evidence of ToM (Meltzoff 1995). People who did not develop language in childhood but experience language development later can develop ToM as their language develops (Morgan et al. 2014). It is ToM that allows us to see other human beings as our fellows and to realise that our fellows are like and differ from us in important ways. Language is fundamental to this process and, therefore, is a fundamental human right.

Biased Narratives and Harms Done Historically, many deaf children have been denied the right to language and still today are denied this right. In part, this is due to confusion over what constitutes language. Language has been equated with speech until recent times, which is a widespread misperception. The evidence is overwhelming that oral/aural and manual/visual modalities have equal capacity linguistically (Sandler and Lillo-Martin 2001), cognitively (Emmorey 2002), and psychosocially (Hintermair 2015). Because that misperception persists, sign languages have not been recognised worldwide as true languages (Bauman and Murray 2017). Many medical professionals and educators still pursue speech-only approaches to language development and education for the deaf child, even though these approaches cannot guarantee access to speech and, thus, cannot guarantee access to language. Many deaf children raised in a speech-only environment struggle to develop language to the fullest extent (Glickman and Hall 2018, and see the portrait of a young deaf child in the short film The Silent Child (2017)). Even with a cochlear implant, there is no sure way of predicting which children receive sufficient linguistic benefit from a speech-only approach (Pisoni and Cleary 2003). If only speech is offered to deaf children and if it is not fully accessible to them, they will experience linguistic delay at the least and risk deprivation and the ability to be completely fluent in any language after the sensitive period for language acquisition has passed, that is, after the first two or three years of life (Lillo-Martin and Henner 2021). The risk of changes in brain architecture with adverse outcomes to other cognitive activities (Hall 2017) is a reality for many deaf children. In addition, linguistic deprivation carries psychosocial harms (Glickman 2005), where lack of full receptive and productive comprehension between child and caregiver can lead to mental health disorders and chronic diseases in adulthood (Kushalnagar et al. 2020). A factor that has led to denying the deaf child their right to language is that sign languages have been suppressed by linguistic ideology (Quadros and Rathmann 2021). Thus, when dominant language forces seek to transform minority languages 540

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to conform with national languages, they lead to minority language endangerment. Often, in such contexts, transformations of sign languages promote manually coded versions of the national spoken languages in educational contexts (Branson and Miller 1998). Unfortunately, the differences in grammar (including syntax and lexical packaging) between speech and sign render these unnatural, synthesised systems difficult to process in practice and, thus, less accessible to the deaf child and ineffective in enabling bilingualism or language transfer (Johnson 1989; Goldin-Meadow and Mayberry 2001). There is yet another cause of denial of the deaf child’s language rights, and that is exclusion. In discussions of human rights and social justice, the narratives of others have eclipsed the narratives of deaf people. De Meulder (2016) outlines how sign language peoples have been cast as people with disabilities. This characterisation acts to delegitimise deaf narratives, since disabled people are not perceived ‘as having equal intelligence potential or capability as fully-abled people’ (Ray 2013). Accordingly, the arguments for sign language rights are scrutinised in a different light from the arguments for spoken minority language rights, to the detriment of deaf children’s access to language. Ideological, scientific, and social narratives about sign languages and about developmental processes of deaf children have circumscribed the deaf as impaired and sign languages as substandard (i.e., gestural and not linguistic) communication systems, thus creating images, practices, and treatments/cures for deafness founded on biased and outdated ideas about language and deaf people (Bienvenu 2001). The view that deafness is a pathology has resulted in deaf voices being excluded from discussions of best practices concerning the education of deaf children (Simms and Thumann 2007) and from discussions of essentials for their personal development and access to human rights (Bauman and Murray 2014; Kusters, De Meulder and O’Brien 2017). It is imperative that societies examine their systemic exclusion and misrepresentations of deaf people and of sign languages. The structural silencing of deaf people and of narratives that establish the power and sophistication of sign languages has been carried out by the very professions called upon to serve and protect the deaf child. Indeed, national and international conferences dealing with deaf matters often include few (if any) deaf presenters and, accordingly, attract few deaf professionals—including meetings of the American Speech-Hearing-Language Association, the National Early Hearing Detection and Intervention Conference, the conference of the International Division for Early Childhood–Council for Exceptional Children, the conference of the International Congress on the Education of the Deaf, the International Newborn Hearing Screening Conference (Benedict and Sass-Lehrer 2007). Education professions, healthcare/medical care and treatment professions, government and social accessibility policies and practices, and overall public policy have, in many places, ignored scientific evidence of the past half century, establishing that sign languages are natural human languages with full expressive range, leading to a great push for the use of cochlear implants to the exclusion of sign languages (Bauman 2008; Mauldin 2016). The damage this exclusion has wreaked on deaf children 541

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includes language and literacy delays and mental and physical health problems that persist into adulthood (Humphries et al. 2016), as well as difficulties in higher-order language processing among long-term cochlear implant users (Chandramouli, Kronenberger and Pisoni 2019). That damage extends beyond the affected individuals; it has devastating effects on how deaf people as a group are viewed in the eyes of the hearing society they live among (Leigh and Andrews 2016) and in the eyes of medical professionals (Alexander, Ladd and Powell 2012; Middleton 2010; Velonaki et al. 2015)—perpetuating fallacies about deaf people’s capacities and failing to recognise deaf people’s valuable community knowledge (Moores 2010; Robinson and Henner 2017). All this lends support to the systemic exclusion of deaf people from narratives they should be relied upon to supply in the first place, the most critical of which is the need for full access to language, which amounts to full access to a sign language, whether or not a deaf person finds any level of success with a cochlear implant. Despite the professional and artistic contributions of deaf people, especially through their sign languages, most of society does not recognise the value of deaf ways of being or of sign languages. Think of Robert Aitken in astronomy; Gustinus Ambrosi and Hillis Arnold in sculpture; Glenn Anderson in education; Jack Ashley in politics; Charles Baird and David Bloch in painting; Donald Ballantyne in experimental surgery; Albert Ballin, Sean Berdy, Linda Bove, Bernard Bragg, Russell Harvard, and Marlee Maitlin in film and theatre; Ruth Benedict in anthropology; and Rose Ayling-Ellis and Nyle DiMarco in dance, to name just a few in modern times (see also Lang and Meath-Lang 1995). The narrative of value in human diversity too often bypasses the language and culture of deaf people. Yet many scientific studies on sign languages transform our understanding of language and cognition, including how languages emerge (Senghas 1995) and the uniformity and diversity of their properties (Meier, Cormier and Quinto-Pozos 2002). Our understanding of the capacity for language has been expanded by a study of hemispheric specialisation and lateralisation in spoken and sign languages (Sakai et al. 2005). Brain plasticity is now better understood because of magnetic imaging and testing (Neville and Bavelier 2002) as well as longitudinal studies of sign language development (Goldin-Meadow et al. 2014). Mapping of regions of the brain and the effects of disease and trauma on the brain as well as the brain’s cognitive flexibility are confirmed by sign language research (Corina 1998). Our traditional understanding of culture, how it works, and the work of culture has been challenged by the cultures that deaf people globally have fashioned and transmitted from generation to generation (Padden and Humphries 2009). For example, we know today that cultures are more diverse than we thought 50 years ago due, in part, to the study of deaf people, which has enlightened us to the fact that ‘families’ form not only vertically (via genetics) but also horizontally (via common experiences and needs) (Solomon 2012). In the everyday lives of millions of people, we encounter many contributions from deaf culture, such as subtitles, which are increasingly common as more non-deaf people demand it, to the point that captioning has been adopted as part of universal design (Tobin 2014) and is of primary importance. Likewise, emphasis on visual technologies aids those who rely more on visual processing or in places where auditory technologies do not work well (West 2009). 542

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The knowledge and benefits that deaf people and sign languages have brought to society are a gift (Bauman and Murray 2014), but that fact seems not to have permeated the general consciousness. We see a lack of reflection about deaf children’s value when we consider the inadequate education of deaf children, which, even after four decades of (mostly hearing) people trying to revamp it, has led to little improvement in academic success of the children (Luft 2016). We see it in the failure of social recognition of deaf lives. We see it in the fact that not enough attention has been paid to deaf people’s right to basic safety and freedom from fear of manipulation by helpers and gatekeepers, such as unprofessional interpreters who make decisions that might not be in the best interests of their clients (Kermit, Mjøen and Olsen 2011; Russell and Shaw 2016). When it comes to deaf people and their rights, deeply embedded misperceptions and closely held false narratives dominate the discourse in most countries. Narratives that portray the lives of deaf people as being in need of a cure or repair prevail in medicine and in ‘speech, language, and hearing sciences’ (that is, sciences focused mainly on audiology and speech-language pathology). Educators’ expectations are lowered when they view deafness as a cognitive threat, perhaps even as a life sentence of struggling with language and literacy (Smith 2013). Parents who have a deaf child are consigned to grief generated by social narratives of the undesirability of deaf lives and sustained by misguidance from professionals with normativity bias (Snoddon 2020). The conclusion that the absence of hearing makes a deaf life inferior is a pervasive and pernicious, unconscious bias resulting from the exclusion of deaf people from public discourses. It is time to repair the harm this bias has thus far caused. Deaf people’s narrative that being deaf is not, in its nature, debilitating or limiting but, in fact, a gain in understanding the diversity of ways that humans can form and enjoy cultures (Bauman and Murray 2014) must be seen alongside negative narratives of loss. Society needs to know deaf narratives that celebrate deaf ways of being. Deaf people’s narratives about their sign languages reveal them to be a source of salvation and pride, which are essential to well-being and happiness. Attention to deaf narratives can result in sign languages being offered to parents as a way to bond with their deaf child, engage in rewarding family interactions, and experience the benefits of typical development of their child. Narratives of deaf people thus have the potential to open a path to human rights for the deaf child and to achieve social justice for deaf sign language users.

Children’s Testimonies We can see the impact of deaf narratives in deaf children’s testimonies that we sampled in four countries on four continents: Ethiopia, Netherlands, Hong Kong, and United States. We chose these testimonies because of their wide geographic and cultural range, because the relevant authorities were quick to allow us to access and cite these materials and because they are representative of the types of comments that came up in all the testimonies we found by deaf children (which were few—mostly being from the United States). These children experience isolation and self-doubt 543

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when communication is hampered at home and/or at school but feel whole, safe, and valuable in an environment in which they can use the sign languages of which they are proud. The children’s words are presented as block quotes in order to highlight them. It should be noted that these children sign their comments, and the following quotations are a transcription of their sign language.

Ethiopia Tamene (2018) examines attitudes regarding language use in formal and informal settings of deaf children, their parents, and their teachers across Ethiopia. Ethiopian sign language, though young, is used by more than a million deaf people. In documenting how important the language is to the Ethiopian deaf community, Tamene (2016, p. 313) offers an approximate statement expressed by many of the children in that study: I try to communicate with my parents and siblings by using spoken language so long as they understand me, but I do not understand them when they talk to me in spoken language. Another interview with adolescent boys at the Victory School for the Deaf shows that none participates in religious services—services important to their families and communities—due to lack of comprehension: Inside my heart I talk with God. I use signing with God. One has a mother, and two have siblings who learned to sign—something that makes them feel lucky because, in the words of one of them: Communicating is hard. The family should use sign language, so the whole family can understand each other. One lives in a small village with only one other deaf person. He greets hearing boys, but after a bit they go away, leaving him on his own. The other two play with deaf friends whenever possible—and one of them said: I met a deaf kid and we talked a long time. . . . The following morning I met him again and we talked and talked. The joy of having someone to talk with permeates their interviews. One child says that deaf should marry deaf because they can understand each other, while another fears that if deaf marry deaf, they might just want to stay at home all the time, talking. All hope to work for an employer who signs. Two prefer to go to a doctor who signs. All list education and courage among the most important benefits deaf people can have. These children see sign language as essential for family life, spiritual life, making friends, having a job, and getting proper healthcare. 544

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Netherlands On 13 October 2020, the Dutch Senate adopted De Wet erkenning Nederlandse Gebarentaal (2021), a law that had already been unanimously passed by the House of Representatives the month before recognising Sign Language of the Netherlands (NGT) as one of the Netherland’s official languages, alongside Dutch and Frisian (Wet erkenning Nederlandse Gebarentaal. 2021). The new law came into force on 16 March 2021; it obliges the government to convert important communication into NGT. The day after the approval of the proposal by the House of Representatives, a journalist interviewed deaf students and a deaf teacher at a secondary special education school in Arnhem about their reactions to this law (Stoop 2020). They talked about their experiences and what this new law would mean to them: In the old days you weren’t allowed to sign, but some people did it secretly. . . . [I]f you were found out, . . . you got hit with a ruler . . . Everyone had to learn to speak the spoken language, and therefore many deaf . . . and hard of hearing had many problems. I can . . . have my own language, use my own sign language . . . and teach in it too. They shared their enthusiasm and joy for their language: It is just so beautiful when you see it . . . This is my favourite sign: HORSERIDING. Because you take the reins and there is a whip in it too. These children are acutely aware of the restrictions on sign language use in the past and are fervent in their appreciation for what they can express with sign.

Hong Kong A non-government organisation—Sign Bilingualism and Co-enrolment in Deaf Education (SLCO)—develops social support services involving sign language in Hong Kong. Most deaf attend speech-only schools, where they cannot understand much. In contrast, the SLCO programme provides bilingual-bimodal education for deaf and hearing children—that is, pairing a sign language with (the text of) an ambient spoken language. In March 2017, one child, then 10 years old, gave a presentation at a public hearing of the Subcommittee on Children’s Rights of the Legislative Council. In an interview with the online media platform RadicalHK (2020) who gave us kind permission to quote from the video (where we give the time within the video of each quote), he said: 1:27: I wanted to tell the government that hearing aids can’t restore us deaf children’s hearing. 545

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1:51: Us deaf people can work, but why can’t we get a decent job? It’s because we can’t get into university. Being deaf affects our studies. If we can’t learn, we won’t be able to have good education and good employment. Deaf people deserve the opportunity to pay tax and to contribute to the society. 3:07: If there were no deaf teachers, I would quit school. . . . I wouldn’t understand my lessons, and I wouldn’t do well in my exams. . . . We can’t hear, so we can’t catch up with the [oral] lessons. Lip-reading? When the teacher writes on the blackboard, students can’t lip-read from behind. When my teacher speaks fast, I can’t lip-read. His deaf teacher reports that when she first met him, he argued with classmates and cried. She asked what was wrong. She reports: 4:37: The first sentence he said was, ‘I feel worthless.’ Being in the bilingual-bimodal school made all the difference for this child. But he says: 5:48: I’m worried about my future. If I attend university, I won’t be able to understand my lectures if there is no sign interpretation. . . . Without sign language support, what can I do? Another child also transferred from a speech-only school to the SLCO, and in a different video (SLCO 2020) she reports with pride: 0:13: I am able to learn as much as hearing students! She plans to be a teacher. Another student in the same video reports how hard it is to understand speech using only lip reading. Further, many words in Cantonese differ only by tone—which confounds lip-reading. She says: 0:33: Under the co-enrolment programme, I can communicate through . . . sign language and spoken language. . . . I have also got a group of hearing friends. I am really delighted about that. The Centre for Sign Linguistics and Deaf Studies at (the Chinese University of Hong Kong) made two other videos used in their research available to us. In one, a child, in primary 6 at that time, signed: I am happy to see and use sign language. . . . Hearing classmates also gradually learn sign language. . . . I feel sorry for other deaf children who study in mainstream schools alone. They can just look at teachers speaking. . . . They will not have friends to play with, and they will feel lonely and sad. . . . I want to study in secondary school and university. . . . I used to feel I was not as 546

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clever as hearing people. I used to think it was a tragedy to be deaf and I was useless. But then I realized I was wrong; hearing people also do things badly and have difficulties. A deaf person can also do well and be clever. Hearing and deaf . . . are equal. . . . Mr. Shum [deaf teacher] said it can be done. He studied hard before he could do it. I realized that I . . . in fact, every deaf person, can do it. . . . Now I don’t feel worried about the future. . . . There is no need to be afraid, be ashamed, and feel sad. . . . I hope others will see that it is a good thing for deaf people to use sign language. Deaf people are not stupid. Deaf people can also learn, study, and increase their knowledge. In the other video, a boy around 12 years old said: I like interacting with both deaf and hearing classmates. . . . [H]earing students can help their deaf classmates with writing and speaking. And . . . when we miss something from the teachers during class. On the other hand, deaf students can teach their hearing buddies sign language and deaf culture. . . . For my identity, I do not feel special being deaf. I can have equal status as hearing people. Deaf can do; hearing can do. We are the same. These children suffered severely—academically and psychosocially—in a speech-only school but thrived in a school that allowed them to build knowledge and friendships through signing.

United States Hensley (2015) asked deaf children what they thought about deaf education. All expressed discomfort with speech lessons and happiness with signing. An 11-year-old boy commented (p. 87): I don’t like going to speech. I prefer to use my own language. . . . Of the four students in my class, there are two kids that can sign and speak, and another boy that can talk OK, but he signs well. I just prefer to sign only. I can’t say even a word. . . . [With my speech teacher] we practice talking . . . [b]ut I’m struggling. . . . I used to be able to say, ‘A’, but I’ve forgotten how. Ugh, I don’t want to do it anyway. A 10-year-old expressed annoyance at a teacher talking to a deaf child (p. 93): She’s talking. Why is she talking to a deaf kid? If she stops talking and just signs, it will motivate the kid to learn sign. A 9-year-old said (p. 93): I’d rather [the teacher] just sign. 547

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When the 10-year-old was asked if it’s important to learn speech and to talk, he said (p. 96): No, not really, because if you need to talk (communicate) with someone, you can write back and forth or use a phone to write out a text. There are different ways to communicate. Not everyone in the world has to speak. Some people sign; some people speak. Children who had moved from a mainstream setting to a bilingual-bimodal school said they felt safe in that school. One reported that in the old school: I didn’t talk all day while I was there. The level of frustration at having no choice for communication other than speech is apparent and entirely understandable; the lack of choice essentially meant no selfexpression for these children and may well have meant little to no receptive communication either.

Summation of the Four Studies These children express hunger for what sign languages give them—the ability to connect through language to the people around them, from family to friends to professionals (teachers, doctors). They delight in the opportunities for clarity and subtlety that sign languages afford them. They value their education in a sign language and fear not being able to continue their education if sign language interpreting is not offered in higher education. When denied a sign language, these deaf children tell us they are effectively without adequately rich communicative means to express themselves and to understand others. They feel worthless, and they worry that there is no satisfying option for them in adult society. Such comments are the strongest kind of evidence that their human right to language goes unprotected in contexts without sign. Such comments are expressed as well by adult deaf people in the United States and the United Kingdom looking back on their childhood (Young et al. 2020).

Ways to Protect and Promote the Right to Language for the Deaf Child The need for establishing adequate bilingual-bimodal programmes and sharing information about them from elementary school through higher education is pressing (see relevant information by the EU supported project De-Sign Bilingual 2016a, 2016b, n.d.). Towards this end, countries should adopt a program of education for parents, families as a whole, and deaf children, which includes: •

How to negotiate the morass of (mis)information about deaf children’s development and sign language on the internet, in consultations with medical 548

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professionals, and in dealing with surrounding society. Parents are initially uninformed and may feel isolation, disorientation, grief, exhaustion, and fear at not knowing how to properly raise their child. They may allow others to make decisions for them that are not in the best interests of anyone. Countries should establish a website with evidence-based information or refer parents to such a site. How to learn a sign language, interact with the local deaf community, and support the child’s language development. Parents can provide their children a nurturing language environment by seeking out sign language exposure (Humphries et al. 2019). Sign language lessons must be offered free to the extended family and neighbours.

Schooling designs based on bilingual-bimodal development are needed so that schools are conducive to the realisation of a just society for deaf children and the adults they become. It is critical that the deaf child becomes comfortable with going between sign languages and spoken languages as early as possible (Grosjean 2010). Educational practices, methodologies, and teacher competencies must be designed to help the deaf child achieve translanguaging habits early (Holmström and Schönström 2018). The central precepts of bilingual-bimodal education for the deaf child connects to well-established practices in education: language transfer (Cummins 1981), language learning across the curriculum (Chamot and O’Malley,1994), promoting meta-cognitive and meta-linguistic skills (Jun Zhang 2001), and learning as a community (collaboration and cooperation) and through peer interaction and intrinsic motivation (Lee and Smagorinsky 2000). Deaf children must be brought together so they are no longer isolated from one another and from bilingual-bimodal environments (Oliva and Lytel 2014). State or national schools for the deaf are possible environments for rich language, social, and educational experiences. Alternatively, deaf children from a reasonably sized area (perhaps larger than a single school district) would benefit from being in the same school, offering them the opportunity to socialise with each other at recess, lunch, and afterschool activities. All employees of the school should learn the local sign language and be enabled to interact on a rudimentary level with the deaf children. Some teachers should be designated as the ones whose classrooms the deaf children will be assigned to—while pooling the deaf children at each grade level in the same classroom. Those teachers should take extra sign language lessons so as to be able to have simple conversations with the children. A qualified educational sign language interpreter should be present in every classroom that has a deaf child (Marschark, Peterson and Winston 2005). At the same time, direct communication in sign language needs to be ensured in early and elementary education (Marschark, Lang and Albertini 2001). Children should have special lessons with a deaf teacher on deaf culture and the structure of their sign language. A deaf adult should be among the playground monitors and the lunchroom monitors. With these steps, the human right of language can be promoted and protected so that the deaf child enjoys the opportunities for a satisfying life that all people deserve. Anything less is not just a violation of the child’s rights but poor public policy that civilised society cannot afford. 549

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Internationally: Provision of sign language in deaf children’s education is included in the UN Declaration on the Rights of Disabled Persons (1975) and the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993). The World Conference on Special Needs Education: Access and Quality (1994)’s Salamanca Statement and Framework for Action on Special Needs Education notes the importance of signing for deaf children and access to education in their national sign language. The UN Convention on the Rights of Persons with Disabilities (2006) protects the right to interpreters, promotes sign language use in official interactions, and promotes linguistic and cultural identities of deaf communities. Brazil: Brazilian Sign Language Federal Law 10.436 (2002) recognises Brazilian Sign Language as a national language, which led to permitting the use of sign languages in school, universities offering courses in Brazilian Sign Language, and sign interpreting of television programs. Federal Decree 5695 (2005) preserves and disseminates signing, and establishes training programs for bilingual teachers in primary education. Europe: The Resolution on Sign Languages for the Deaf (1988/1998) asks EU member states to legally recognise sign languages. The European Union of the Deaf Brussels Declaration on Sign Languages in the EU (2010) [article 105] advocates for the rights of deaf people. The European Disability Strategy (2010–2020) urges facilitating the use of sign language in dealing with EU institutions. United States: IDEA (1975/2004/2006/2011), requires public school systems to ensure free appropriate education to children with disabilities, emphasizing special education and preparation for employment, and independent living. [38] Section 300 guarantees interpreting services and hearing aids in school for deaf-blind, deaf, and hard-of-hearing children. The Americans with Disabilities Act (1990/2008) requires state and local government programs to provide interpreters or other aids to handicapped people for equal access.

References Alexander, A., Ladd, P. and Powell, S. 2012. Deafness might damage your health. The Lancet 379(9820), pp. 979–981. Bauman, H. D. L. ed. 2008. Open your eyes: Deaf studies talking. Minneapolis: University of Minnesota Press. Bauman, H. D. L. and Murray, J. J. eds. 2014. Deaf gain: Raising the stakes for human diversity. Minneapolis: University of Minnesota Press.

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Social Justice and Language Rights for Deaf Children Bauman, H. D. L. and Murray, J. J. 2017. Sign languages. In O. García, N. Flores and M. Spotti (eds.), The Oxford handbook of language and society. Cambridge: Cambridge University Press, pp. 243–260. Benedict, B. S. and Sass-Lehrer, M. 2007. Deaf and hearing partnerships: Ethical and communication considerations. American Annals of the Deaf 152(3), pp. 275–282. Bienvenu, M. J. 2001. Can deaf people survive ‘deafness’? In L. Bragg (ed.), Deaf world: A historical reader and primary sourcebook. New York: New York University Press, pp. 318–324. Bird, L. 2003. Seen and heard? Moving beyond discourses about children’s needs and rights in educational policies. New Zealand Journal of Educational Studies 38(1), p. 3748. Branson, J. and Miller, D. 1998. Nationalism and the linguistic rights of Deaf communities: Linguistic imperialism and the recognition and development of sign languages. Journal of Sociolinguistics 2(1), pp. 3–34. Chamot, A. U. and O’Malley, J. M. 1994. The CALLA handbook: Implementing the cognitive academic language learning approach. New York: Addison-Wesley Publishing Company. Chandramouli, S. H., Kronenberger, W. G. and Pisoni, D. B. 2019. Verbal learning and memory in early-implanted, prelingually deaf adolescent and adult cochlear implant users. Journal of Speech, Language, and Hearing Research 62(4), pp. 1033–1050. Convention on the Rights of Persons with Disabilities and Optional Protocol. 2006. [online] [Accessed on 10 December 2020] Available from: www.un.org/disabilities/documents/ convention/convoptprot-e.pdf. Convention on the Rights of the Child. 1989. [online] [Accessed on 10 December 2020. Available from: www.ohchr.org/en/professionalinterest/pages/crc.aspx Corina, D. P. 1998. Aphasia in users of signed languages. In P. Coppens, Y. Lebrun and A. Basso (eds.), Aphasia in atypical populations. New York: Routledge, pp. 261–309. Cummins, J. 1981. Empirical and theoretical underpinnings of bilingual education. Journal of Education 163(1), pp. 16–29. De Meulder, M. 2016. The power of language policy: The legal recognition of sign languages and the aspirations of deaf communities. No. 301. Jyväskylä, Finland: University of Jyväskylä. De Meulder, M., Murray, J. J. and McKee, R. L. eds. 2019. The legal recognition of sign languages. Bristol: Multilingual Matters. De-Sign Bilingual. n.d. Developing & documenting sign bilingual best practice in schools. [online] [Accessed on 4 March 2022] Available from: https://designbilingual.univie.ac.at/ index.en.php De-Sign Bilingual. 2016a. Main findings of de-sign bilingual. [online] [Accessed on 4 March 2022] Available from: https://designbilingual.univie.ac.at/downloads/De-Sign_Bilingual_ Findings.pdf De-Sign Bilingual. 2016b. Bilingual education with signed and spoken languages in schools! Call to action. [online] [Accessed on 4 March 2022] Available from: https://designbilingual.univie.ac.at/downloads/De-Sign_Bilingual_Political_Tasks.pdf Emmorey, K. 2002. Language, cognition, and the brain: Insights from sign language research. Mahwah: Lawrence Erlbaum Associates. García, O. and Woodley, H. H. 2014. Bilingual education. In M. Bigelow and J. J. EnnserKananen (eds.), The Routledge handbook of educational linguistics. New York: Routledge, pp. 154–166. Glickman, N. S. 2005. Language disfluency and diagnosis in the deaf inpatient population. Jadara-Rochester NY 38(3), pp. 1–29. Glickman, N. S. and Hall, W. C. eds. 2018. Language deprivation and deaf mental health. New York: Routledge. Goldin-Meadow, S., Levine, S. C., Hedges, L. V., Huttenlocher, J., Raudenbush, S. W. and Small, S. L. 2014. New evidence about language and cognitive development based on a longitudinal study: Hypotheses for intervention. American Psychologist 69(6), pp. 588–599. Goldin-Meadow, S. and Mayberry, R. I. 2001. How do profoundly deaf children learn to read? Learning Disabilities Research & Practice 16(4), pp. 222–229.

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Tom Humphries et al. Grosjean, F. 2001. The right of the Deaf child to grow up bilingual. Sign Language Studies 1(2), pp. 110–114. Grosjean, F. 2010. Bilingualism, biculturalism, and deafness. International Journal of Bilingual Education and Bilingualism 13(2), pp. 133–145. Hall, W. C. 2017. What you don’t know can hurt you: The risk of language deprivation by impairing sign language development in deaf children. Maternal and Child Health Journal 21(5), pp. 961–965. Hensley, J. S. 2015. ‘Some people sign, some people speak’: d/Deaf kids talk about deaf education (PhD Thesis), Athens, University of Georgia. Hintermair, M. 2015. The role of language in deaf and hard-of-hearing children’s socialemotional development. In M. Marschark and P. E. Spencer (eds.), The Oxford handbook of deaf studies in language. Oxford: Oxford University Press, pp. 62–78. Holmström, I. and Schönström, K. 2018. Deaf lecturers’ translanguaging in a higher education setting. A multimodal multilingual perspective. Applied Linguistics Review 9(1), pp. 90–111. Humphries, T., Kushalnagar, R., Mathur, G., Napoli, D. J., Padden, C., Rathmann, C. and Smith, S. 2013. The right to language. The Journal of Law, Medicine & Ethics 41(4), pp. 872–884. Humphries, T., Kushalnagar, P., Mathur, G., Napoli, D. J., Padden, C., Rathmann, C. and Smith, S. 2016. Avoiding linguistic neglect of deaf children. Social Service Review 90(4), pp. 589–619. Humphries, T., Kushalnagar, P., Mathur, G., Napoli, D. J., Rathmann, C. and Smith, S. 2019. Support for parents of deaf children: Common questions and informed, evidence-based answers. International Journal of Pediatric Otorhinolaryngology 118, pp. 134–142. Johnson, R. E. 1989. Unlocking the curriculum: Principles for achieving access in deaf education. Working Paper 89(3). [online] [Accessed on 10 December 2020] Available from: https://eric.ed.gov/?id=ED316978. Jun Zhang, L. 2001. Awareness in reading: EFL students’ metacognitive knowledge of reading strategies in an acquisition-poor environment. Language Awareness 10(4), pp. 268–288. Kermit, P., Mjøen, O. M. and Olsen, T. 2011. Safe in the hands of the interpreter? A qualitative study investigating the legal protection of Deaf people facing the criminal justice system in Norway. Disability Studies Quarterly 31(4). Kushalnagar, P., Ryan, C., Paludneviciene, R., Spellun, A. and Gulati, S. 2020. Adverse childhood communication experiences associated with an increased risk of chronic diseases in adults who are deaf. American Journal of Preventive Medicine 59, pp. 548–554. https://doi. org/10.1016/j.amepre.2020.04.016 Kusters, A., De Meulder, M. and O’Brien, D. 2017. Innovations in deaf studies: The role of deaf scholars. Oxford: Oxford University Press. Ladd, P. 2003. Understanding deaf culture: In search of deafhood. Clevedon: Multilingual Matters. Lang, H. G. and Meath-Lang, B. 1995. Deaf persons in the arts and sciences: A biographical dictionary. Westport: Greenwood Publishing Group. Lee, C. D. and Smagorinsky, P. 2000. Vygotskian perspectives on literacy research: Constructing meaning through collaborative inquiry. Learning in doing: Social, cognitive, and computational Perspectives. Cambridge: Cambridge University Press. Leigh, I. W. and Andrews, J. F. 2016. Deaf people and society: Psychological, sociological and educational perspectives. New York: Routledge. Lillo-Martin, D. and Henner, J. 2021. Acquisition of sign languages. Annual Review of Linguistics 7, pp. 395–419. Luft, P. 2016. Promoting positive transition outcomes: Effective planning for deaf and hard of hearing young adults. Washington, DC: Gallaudet University Press. Marschark, M., Lang, H. G. and Albertini, J. A. 2001. Educating deaf students, from research to practice. Oxford: Oxford University Press. Marschark, M., Peterson R. and Winston, E. A. eds. 2005. Sign language interpreting and interpreter education, Directions for research and practice. Oxford: Oxford University Press.

552

Social Justice and Language Rights for Deaf Children Mauldin, L. 2016. Made to hear: Cochlear implants and raising deaf children. Minneapolis: University of Minnesota Press. Mckee, R. L. 2008. The construction of deaf children as marginal bilinguals in the mainstream. International Journal of Bilingual Education and Bilingualism 11(5), pp. 519–540. Meier, R. P., Cormier, K. and Quinto-Pozos, D. G. eds. 2002. Modality and structure in signed and spoken languages. Cambridge: Cambridge University Press. Meltzoff, A. N. 1995. Understanding the intentions of others: Re-enactment of intended acts by 18-month-old children. Developmental Psychology 31(5), pp. 838–850. Middleton, A. ed. 2010. Working with deaf people: A handbook for healthcare professionals. Cambridge: Cambridge University Press. Mitchell, R. E. and Karchmer, M. A. 2004. Chasing the mythical ten percent: Parental hearing status of deaf and hard of hearing students in the United States. Sign Language Studies 4(2), pp. 138–163. Moores, D. F. 2010. Partners in progress: The 21st International congress on Education of the Deaf and the Repudiation of the 1880 Congress of Milan. American Annals of the Deaf 155(3), pp. 309–310. Morgan, G., Meristo, M., Mann, W., Hjelmquist, E., Surian, L. and Siegal, M. 2014. Mental State language and quality of conversational experience in deaf and hearing children. Cognitive Development 29, pp. 41–49. Neville, H. and Bavelier, D. 2002. Human brain plasticity: Evidence from sensory deprivation and altered language experience. Progress in Brain Research 138, pp. 177–188. Oliva, G. A. and Lytel, L. 2014. Turning the tide: Making life better for deaf and hard of hearing school children. Washington, DC: Gallaudet University Press. Pabsch, A. and Wheatley, M. 2012. Sign language legislation in the European Union—Edition II. Brussels: European Union of the Deaf. Padden, C. and Humphries, T. 2009. Inside deaf culture. Cambridge: Harvard University Press. Pisoni, D. B. and Cleary, M. 2003. Measures of working memory span and verbal 51 rehearsal speed in deaf children after cochlear implantation. Ear and Hearing 24(1), pp. 106S—120S. Premack, D. and Woodruff, G. 1978. Does the chimpanzee have a theory of mind? Behavioral and Brain Sciences 1(4), pp. 515–526. Quadros, R. M., de. and Rathmann, C. 2021. Sign language standardization. In W. AyresBennett and J. Bellamy (eds.), The Cambridge handbook of language standardization. Cambridge: Cambridge University Press. RadicalHK. 2020. You can only hear it with your heart (EngCC). [online] [Accessed on 15 May 2021] Available from: www.youtube.com/watch?v=OXEpzSESKTw&feature= youtu.be Ray, S. J. 2013. Normalcy, knowledge, and nature in Mark Haddon’s the curious incident of the dog in the night-time. Disability Studies Quarterly 33(3), pp. 1–13. Robinson, O. E. and Henner, J. 2017. The personal is political in the deaf mute howls: Deaf epistemology seeks disability justice. Disability & Society 32(9), pp. 1416–1436. Roots, J. D. 1999. The politics of visual language: Deafness, language choice, and political socialization. Ottawa: National Library of Canada. Russell, D. and Shaw, R. 2016. Power and privilege: An exploration of decision-making of interpreters. Journal of Interpretation 25(1), pp. 1–26. Sacks, O. 1990. Seeing voices: A journey into the world of the deaf. New York: Harper Perennial. Sacks, O. 2010. The mind’s eye. New York: Alfred A. Knopf. Sakai, K. L., Tatsuno, Y., Suzuki, K., Kimura, H. and Ichida, Y. 2005. Sign and speech: Amodal commonality in left hemisphere dominance for comprehension of sentences. Brain 128(6), pp. 1407–1417 Sandler, W. and Lillo-Martin, D. 2001. Natural sign languages. In A. Aronoff and J. ReesMiller (eds.), The handbook of linguistics. Hoboken: Wiley Online Library, pp. 533–562. Senghas, A. 1995. Children’s contribution to the birth of Nicaraguan Sign Language (Ph.D Thesis), Cambridge: Massachusetts Institute of Technology.

553

Tom Humphries et al. Simms, L. and Thumann, H. 2007. In search of a new, linguistically and culturally sensitive paradigm in deaf education. American Annals of the Deaf 152(3), pp. 302–311. SLCO. 2020. Two deaf students’ feelings in SLCO Programme (Eng Sub). Produced by Tao Ti and Fox Production. [online] [Accessed on 15 May 2021] Available from: www.youtube. com/watch?v=opeA17Oz_vA&feature=youtu.be Smith, D. H. 2013. Deaf adults: Retrospective narratives of school experiences and teacher expectations. Disability & Society 28(5), pp. 674–686. Snoddon, K. 2020. The social and epistemological violence of inclusive education for deaf learners. Canadian Journal of Disability Studies 9(5), pp. 185–213. Solomon, A. 2012. Far from the tree: Parents, children and the search for identity. New York: Simon and Schuster. Stoop, M. 2020. NOS Jeugdjournaal 2 september 2020 om 19:00. [online] [Accessed on 15 May 2021] Available fromn: www.zapp.nl/programmas/jeugdjournaal/gemist/POW_04502084 Tamene, E. H. 2016. Language use in Ethiopian Sign Language. Sign Language Studies 16(3), pp. 307–329. Tamene, E. H. 2018. The sociolinguistics of Ethiopian sign language: A study of language use and attitudes. Washington, DC: Gallaudet University Press. The Silent Child. 2017. [Film] Chris overton dir. UK: Slick films. [Accessed on 10 December 2020] Available from: youtube.com/watch?v=2GbxFIVQv8c Tobin, T. J. 2014. Increase online student retention with universal design for learning. Quarterly Review of Distance Education 15(3), pp. 13–24. Velonaki, V. S., Kampouroglou, G., Velonaki, M., Dimakopoulou, K., Sourtzi, P. and Kalokerinou, A. 2015. Nurses’ knowledge, attitudes and behavior toward Deaf patients. Disability and Health Journal 8(1), pp. 109–117. Universal Declaration of Human Rights. 1948. [Accessed on 10 December 2020] Available from: www.un.org/en/about-us/universal-declaration-of-human-rights West, T. G. 2009. In the mind’s eye: Creative visual thinkers, gifted dyslexics, and the rise of visual technologies. Amherst: Prometheus Books. Wet erkenning Nederlandse Gebarentaal. 2021. [Accessed on 4 March 2022] Available from: https://zoek.officielebekendmakingen.nl/stb-2021-165.html WFD. 2016. WFD position paper on the language rights of deaf children. [online] [Accessed on 10 December 2020] Available from: https://wfdeaf.org/news/resources/ wfd-position-paper-on-the-language-rights-of-deaf-children-7-september-2016/ Wrigley, O. 1996. The politics of deafness. Washington, DC: Gallaudet University Press. Young, A., Szarkowski, A., Ferguson-Coleman, E., Freeman, D., Lindow-Davies, C., Davies, R., Hopkins, K., Noon, I., Rogers, K., Russell, J., Seaver, L. and Vesey, K. 2020. The lived experience and legacy of pragmatics for deaf and hard of hearing children. Pediatrics 146(3), pp. S304—S309.

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31 THROUGH THE EYES OF CHILDREN WITH DISABILITIES Recognising Children’s Agency in their Play in Inclusive Playspaces Jenene Burke and Lisa Stafford Introduction Children’s agency is an important concept, with deep connections to the right to be able to express one’s views and make choices. This right is safeguarded under the United Nations’ Convention on the Rights of the Child (1989) (CRC) (Article 12) and the United Nations Convention on the Rights of Persons with Disabilities (2006) (CRPD) (Article 7 and Article 21). All aspects of daily life, including the fundamental right for all children to participate in play (Article 30 and Article 31), are set out in the Convention. However, children with disabilities are seldom provided with opportunities to communicate their views and make choices, due to ableist and ageist perceptions held by society regarding their competence and capabilities. This prejudice is evident within the geography of playspaces. Adopting the social model of childhood disability (Connors and Stalker 2007) lens and a child-led post-occupancy evaluation (POE) of inclusive playspaces, we contest these prejudices in this chapter through ‘the voice’ and agency of children with disabilities. The study reported in this chapter utilises participatory methodologies of child-led tours and self-filmed free play sessions in three locations in eastern Australian states that enabled the ‘voices’ of ten children with diverse cognitive, neurological, and sensory disabilities to be heard about inclusive playspaces. Inclusive playspaces are designed to be accessible and support play for children with a broad range of abilities. Attention was given to children’s opinions, actions, and play cultures, enabling them to be positioned as experts in their own worlds. This chapter shares poignant visual and spatial insights into the agency of play gleaned from the fieldwork of our study. Children were observed using the playspaces strategically to make the most of their time, effort, and experiences, sometimes DOI: 10.4324/9781003056737-42

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directing their own play, and other times leading others to play. Importantly, the children’s agency also extended to their resistance behaviours, with some of them actively avoiding adult surveillance and defying attempts by adults to control their play. The authors of this chapter stress the importance of ensuring the rights of children with disabilities are upheld, as they are a route to discerning valuable insights into their play needs and actions, and help to dispel prejudices that risk silencing disabled children.

Children’s Rights and Children’s Agency Having a say and agency are linked. Agency has been described as the ‘ability to influence’ (Kennedy and Surman 2006, p. 35) and exercise self-determination (Erwin et al. 2016). Olli et al. (2012) see agency as an attribute all humans have and the realisation of agency as reliant on social interactions. Further, these authors make a distinction between Mayall’s (2002) concept of ‘actorness’, which privileges the description of acting over the consequences of acting, and ‘agency’, as realised through interactions with others. Other researchers (for example, Ashby et al. 2015; Rossetti et al. 2008) define agency in a comparable way—as an expression of communication as it impacts on social interaction. In the context of children’s lives, agency can mean being supported to make choices and decisions that impact their worlds. While children’s agency as a concept and right is growing in interest across childhood studies in various fields—such as education and social services—there is no agreed definition. In this chapter, we adopt a broad definition and consider both concepts, the realisation of children’s agency as exercised in their play in an inclusive playspace, through choosing their own actions, and also the expression of their agency, which may or may not be conveyed through their communication with others, as being important aspects of agency.

Contextualising Children’s Agency in Relation to Disabled Children Children’s agency is gaining some attention in the international academic literature as well as in policy about children’s well-being related to the lives of children with disabilities. In Australia, change has been progressed through National Principles for Child Safe Organisations, which includes Principle 2, Children’s Voices: ‘Children and young people are informed about their rights, participate in decisions affecting them and are taken seriously’ (Australian Human Rights Commission 2019). Recognition of children’s voices has also been evident in national professional frameworks— for example, the National Quality Standards for early childhood education of the Australian Children’s Education and Care Quality Authority (ACECQA), National Standard 1, Quality Area 1, ‘Supporting Agency: Involving children in decisionmaking’ (ACECQA 2018). The Children’s Report (UNICEF 2018) indicates that Australia, under the UNCRC, has fallen short of giving children a say, particularly those who are most vulnerable and disadvantaged, in the development of programmes and policies that 556

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affect their lives. The report asserts the necessity for embedded processes where children are enabled to make decisions, especially in the arena of family law, child protection, and youth justice. This report follows in the wake of Royal Commission into Institutional Responses to Child Sexual Abuse, which found that significant barriers and serious consequences can result when children are not given a voice, listened to, and believed (Royal Commission into Institutional Responses to Child Sexual Abuse 2017). However, stated obligations alone are not enough to safeguard and uphold children’s rights to express their views and be heard, as well as children do not always have the means to claim their rights for themselves (Stafford et al. 2021). While rights are accorded to children with disabilities (Stafford et al. 2021), human rights conventions thus articulate a principle, in that they ‘promise many rights to children, but at the same time the conventions give adults the power to decide who can use those rights’ (Olli et al. 2012, p. 794). This principle is also relevant to the concept of agency. Children are not always afforded the agency that allows them to influence their own matters (Burke 2012; Claughton 2020; Olli et al. 2012, 2021). This persistent doctrine has a profound influence on children developing and exercising agency, particularly in a playspace environment. Identifying and articulating one’s needs is an important part of self-determination, as it seeks to ensure individual choices, culture, preferences, and interests (Erwin et al. 2016). Self-determination plays a critical role in promoting the rights of children, particularly marginalised and disempowered children, which include those with disabilities (Erwin et al. 2016), and First Nations children—such as Australian Aboriginal and Torres Strait Islander children (McVeigh 2013). Early childhood studies have shown that supporting the development of self-determination in children from an early age (for example, from the age of 3) is critical to build capacity in choicemaking, problem-solving, and goal-setting (Erwin et al. 2016). The expression of agency and self-determination, however, is likely to be hampered or obstructed for a disabled child because of the minority status they occupy, both as a child and as being disabled (Priestley 1998; Shakespeare and Watson 1998). Olli et al. (2021) assert that children with disabilities may be impeded in their ability to act with agency because of the power adults have to control them. These researchers identify a range of factors associated with institutional contexts that can facilitate or hinder children with disabilities in realising their agency. These factors can stem from the attitude of a professional towards a child, how a professional chooses to communicate with a child or approach any communication problems, and institutional structures that allow the child to have an influence. Likewise, as Claughton (2020) points out, adults’ assumptions about the capabilities of children with disabilities restrict children’s opportunities to ‘act independently and intentionally’ (Claughton 2020, p. 215). Paternalism and ableism are intertwined in oppressing agency. Overprotection tends to underestimate a child’s abilities (Davis and Watson 2001), attributing meaninglessness to their actions, or interpreting behaviour where agency is expressed as ‘naughty’ and thus punishable (MacArthur et al. 2007), thereby obstructing the realisation of their agency. Focusing on a child’s strengths and expecting their best (Higgins, Macarthur, and Kelly 2009) and regarding children as individuals, 557

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instead of looking through a disability label (Davis and Watson 2000), is important in ensuring children have opportunities to express agency.

Barriers to Enacting Agency in Playspaces As outlined at the start of this chapter, the right of the child with disabilities to play is captured within both the CRC and CRPD. Article 31 of the CRC outlines that children have a right to ‘rest and leisure, to engage in play and recreational activities’, located along with the ‘provision of appropriate and equal opportunities for cultural, artistic, recreational and leisure activity’. Article 23 recognises the special needs of a disabled child: ‘[A]ssistance . . . shall be designed to ensure that the disabled child has effective access to . . . recreation opportunities in a manner conducive to the child’s achieving the fullest possible social integration and individual development.’ And Article 30 5d of the UNCRPD ensures that ‘children with disabilities have equal access with other children to participation in play, recreation and leisure and sporting activities, including those activities in the school system’. Yet for many children with disabilities, they do not have the same choice and quality of experience of play as their peers and siblings due to social and physical barriers (Burke 2012, 2015; Stafford 2017b). Traditional public playgrounds tend to have insufficient access, a lack of play options, as well as limited social interaction opportunities for children with disabilities (Burke 2012, 2015; Jeanes and Magee 2012; Lynch et al. 2020). Exclusion in traditional playgrounds stems from homogenised views of children, which has resulted in disabled children being overlooked or not considered to have the same play needs as other children (Burke 2015; Stafford 2017b). Barriers to the provision of inclusive playspaces are wide-ranging and occur at policy level (Lynch et al. 2020; Van Melik and Althuizen 2020) through to exclusionary planning and design approaches (Fernelius and Christensen 2017; Stafford 2017b). Not being recognised as playground users has resulted in the interests of disabled children not being fully considered in planning and designing public outdoor playspaces (Jeanes and Magee 2012), which means not being able to engage freely in play or not being able to exercise their agency (Burke 2012, 2015; Stafford 2017b). In response to these barriers, projects to create more inclusive public playspaces have taken place across Australia (e.g. Touched by Olivia Foundation, Queensland All Abilities Playground Project, Variety Australia) and internationally (e.g. Play for All, UK; Boundless Playgrounds, USA). Yet there is limited evidence that shows the effectiveness of purpose-built, inclusive playspaces in enabling play for children with diverse abilities, as well as scant research to inform the role of inclusive public playspaces in the promotion of play and its many benefits (Woolley and Lowe 2012). How agency is enacted in inclusive playspaces has rarely been studied from disabled children’s perspectives. Governments and industry are looking for evidence-based data to inform further investments. This pilot study was the start of this process. Our study seeks to address both these shortcomings through a participatory, child-inclusive approach to post-occupancy evaluation of three inclusive playspaces in Australia. 558

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Research Design This section begins by outlining the theoretical and methodological frame, followed by the research design in which child-centric participatory methods are featured.

Theoretical and Methodological Frame In this study, the concept of agency is applied methodologically in two ways. First, agency is embedded in the epistemological beliefs that underpin the study, and shapes the methodology and research approach (Olli et al. 2012). This means that children are positioned as ‘free agents, decision makers, worthy of being taken seriously’ (Nind et al. 2010, p. 654), enabling recognition of the ‘intrinsic potentialities of all children’ (Goodley and Runswick-Cole 2010, p. 499). ‘Giving voice’ to children comes from the recognition that disabled children have been silent, but not necessarily absent, in research (Connors and Stalker 2003). Rossetti and colleagues explain this concept succinctly, underscoring the responsibility for researchers to ensure they create conditions for children with disabilities to be actively listened to: Expressions of agency require contexts in which communication partners believe that an individual has something to say, provide communication supports, and possess the listening skills to hear them. (Rossetti et al. 2008, p. 365) Accordingly, active listening often requires the communication partner, such as the researcher, to be open to the nuanced ways individual children might communicate. ‘Giving voice’ does not necessarily mean that research participants will be able to use their voice to speak. Rather, it requires ‘reading the, sometimes subtle, efforts to communicate as powerful expressions of choice, control and participation’ (Ashby et al. 2015, p. 1478) and providing means through which communication can be facilitated. Second, agency is used as a lens to interpret the actions of children, as demonstrations and expressions of agency, as gleaned from the data (Burke 2012, 2015; Burke and Claughton 2019; Claughton 2017). This lens resists deficit interpretations of children’s behaviours, and for that reason, it is congruent with inclusive methodologies. The following ways that children express agency can be identified from the research data in the actions of children: • • • • •

By actively engaging in an interactive environment (Olli et al. 2012) Through the realisation of ideas through interaction with others (Olli et al. 2012) As interactions that influence or have consequences for others (Olli et al. 2012) As expressed within unique peer cultures, where children creatively produce play from information they have appropriated from the adult world (Corsaro 2005) As exerting control and power within interactions (Pramling Samuelsson and Johansson 2006) 559

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In addition to the previous outline of agency, studying disabled children’s play in inclusive playspaces from a person–environment framework underpinned by the social model of disability offers a strong theoretical basis. Under the social model, disability is interpreted as a socially constructed phenomenon resulting from the mechanisms of society that oppress people with impairments (Oliver 1990). This is consistent with Item (e) of the Preamble to the CRPD (2006, p. 1) 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’. (United Nations 2006, p. 1). Viewed through a social constructionist lens, the social model of childhood disability (Connors and Stalker 2007) rejects the passive stereotypes often associated with disabled children, instead seeking to identify how children with disabilities act within children’s cultures with agency (Burke 2012). A person–environment framework enables a focus on children’s agency, it provides a rich description of the environmental context from action and development, and it places children and the environment together in the common realm (Heft and Chawla 2006). Such an approach has been established in previous fields of children (Horelli 2007) and disability (Shakespeare 2006). Both fields have drawn on person–environment theory to understand how humans live in the world and experience everyday life.

Interpretative Case Studies A holistic case study methodology is adopted in this study. Case study provides the opportunity to examine ‘a phenomenon of some sort occurring in a bounded context’ (Miles and Huberman 1994, p. 25). While a case study can be used to explore single, holistic, or multiple cases of ‘communities, relationships, decisions, or projects’ (Yin 2009, p. 33), this particular study considers children’s use of selected inclusive play environments across multiple sites. As the results have been pooled across the three sites and the data contributes to building understanding of children’s experiences of inclusive playspaces in general, it is considered to be a single holistic case study. Case study methodology is underpinned by constructivist epistemology (Stake 1995; Yin 2003) and the assertion that ‘truth is relative and that it is dependent on one’s perspective’ (Baxter and Jack 2008, p. 544). Yin (2003) provides four features of research that should be present in case study design: the focus of the study is on answering ‘how’ and ‘why’ questions; the researcher cannot manipulate the behaviour of those involved in the study; the researcher seeks to cover contextual conditions because they are considered relevant to the phenomenon being studied; the boundaries between the phenomenon and context are unclear. Cases can be bounded by various combinations of factors, such as time, place, context, or activity (Miles and Huberman 1994; Stake 1995; Yin 2003), to control the scope of the research. In this chapter, the two factors—environment and children’s activity—bind the case and will be considered in unison. The proposed methodology is appropriate and sound for the research context and the person–environment interaction being understood. Case study protocol (Yin 1994) provides ‘well-documented and systematic 560

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examination of . . . issues that can inform future practice, policy, theory and/or education’ (Francis 2003, p. 8).

Case Selection of Inclusive Playspaces Three playspace sites across eastern Australia were selected, one in each of Queensland (Qld), New South Wales (NSW), and Victoria (Vic). Sites were selected according to two particular criteria: • •

Being purpose-built as ‘inclusive’ or ‘all abilities’ Being the property of a local council

Three sites (Figure 31.1) were selected in which location and principles of inclusive design were applied. 1. 2. 3.

Landsborough, Qld Ballarat, Vic Penrith, NSW

Two sites were situated in inner regional areas and considered to be regional— district-level parks, while the NSW site was located in the outer suburban—inner regional fringe in a new master plan community. Variability was important in the pilot as it allowed the researchers to gauge geographical and design factors that may also be at play in shaping the effectiveness of the playspaces (see Stafford 2017b). The fieldwork was carried out at one site at a time, with two researchers and a research assistant on hand. Ballarat was undertaken in early May, before winter; Penrith in late July; and Landsborough in the Southern Hemisphere spring in late September.

Participatory Child-Inclusive Approach Conducting research in ways that allow children with disabilities to realise their agency is a critical but often overlooked approach by researchers. Too often, research in areas of children and environment studies still relies on methods of observation,

Figure 31.1 Selected inclusive playscapes: left, Ballarat; middle, Penrith; right, Landsborough.

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surveys, and interviews that are detached from the embodied experiences of play. Traditional ways of researching are also underpinned by ageist and ableist assumption, which has meant children with disabilities are often disregarded as credible and capable research participants due to assumptions about their capacities (Stafford 2017a; Loebach and Gilliland 2010; Moore, Cosco and Ringaert 2005; Wenger et al. 2021; Wickenden and Kembhavi-Tam 2014). When they are included, they are often researched by proxy (Stafford 2017a) and are unlikely to be included in participatory processes (Hill et al. 2004). For children with disabilities, being researched from an agency perspective is still not everyday practice, but this is changing with growing disabled childhood scholarly contributions (Burke 2012, 2015; Burke and Claughton 2019; Claughton 2020; Holt 2004; Nind 2008; Nind, Flewitt, and Payler 2010; Olli et al. 2012; Stafford 2017a, 2020). Our approach continues this work by adopting inclusive, child-centric participatory research (ICCPR) founded on the understanding that children with disabilities are knowledgeable meaning-makers (Connor et al. 2008). Children shape and choose what to share in the research process (Davis, Watson and CunninghamBurley 2000; Holt 2004), as the approach embraces diversity in ways children express voice (Bernardi 2020; Stafford 2017a), their cultural experiences and backgrounds (Daelman et al. 2020), and the plurality of childhood (Daelman et al. 2020; James 2010; Punch 2020). The participatory research methods that accompany this approach are dynamic and on the increase, using various creative art-based methods. Art-based activity varies to a large extent and can include drawing, painting, photography, drama, dance, and music (Angell et al. 2015; Bernardi 2020; Burke 2012, Cologon et al. 2019; Horgan 2017) and can support interviews and abstract discussions to explore a theme or phenomenon (Stafford 2017a; Vanner and Kimani 2017). The growing use of child-centred approaches such as art-based activity in research is reflective of a changing sociological perspective on children (Horgan 2017; James, Jenks and Prout 1998) and, especially, disabled children (Goodley and RunswickCole 2010). This shift has enabled the democratising of research and listening to voices that would otherwise remain silent in a capability approach (Bernardi 2020). However, there is a concern that persisting adultism can pervade recruitment and methods undertaken with children (Bernardi 2020) and with adult imposed research agendas. This is a critical concern for children with disabilities and explains why principles, values, and methods all need to be aligned to ensure that it is authentically inclusive and child-led (Stafford 2017a). Our approach uses creative methods, such as self-filming video and photos with walking tours and free play, to enable children with disabilities to exercise agency in research and play (as illustrated in activity). Free play takes place when ‘adults do not guide or scaffold, and in which there is no goal’ (Zosh et al. 2018, p. 3). Our approach also addresses the exclusionary practices often experienced by children with severe learning disabilities and/or complex communication needs, by developing appropriate methods to effectively pay attention to children’s views and experiences from an embodied, play, and creative focus, which does not privilege 562

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the spoken word. This is important, given these environments are designed specifically to enable their play experiences.

The Research Activities To understand the effectiveness of a play environment in removing barriers and enabling play for children with disabilities, multiple methods are required to collect both functional (i.e. ease of access around the playground) and first-hand (i.e. accounts of their play experiences) information. Specific to children-focused environments, to capture children’s perceptions and experience of environments, methods need to be child-centric, diverse-ability friendly, and employ multiple means (Loebach and Gilliland 2010; Moore, et al. 2005; Wickenden and Kembhavi-Tam 2014). In this study, two child-centric and inclusive activities were designed to capture this. These are: •

•

Activity 1: Child-led tours of the playground—activity-based interview (15–20 minutes). Each child participant was asked to take the researchers on a tour of the playspace—showing them what they play on, their favourite and least favourite places/elements, and explain why they hold these opinions. The tours were filmed/video-recorded by the child. Activity 2. Free play time (15–20 minutes). Participants completed a single 15-minute free play session in the playspace while wearing a small lightweight accelerometer-based motion sensor (4.6 × 3.3 × 1.5 cm, 19 g) on the left and right side of their waist and both wrists, a global positioning system (GPS) tracker, and a micro video camera with which they could film their free play.

Photo and video are suitable to support methods that enable children to tell their stories as well as capture them playing and discern the meaning of these happenings from children with disabilities’ own embodied experiences (Loebach and Gilliland 2010; Moore, Cosco and Ringaert 2005; Wickenden and Kembhavi-Tam 2014). The activities also adopted reflexivity, allowing children to direct and reveal what was important to them and provide insight into the meaning of their play as experienced in this context. This meant that in some cases, the tour activity melded into play activity. The researchers did not stop the children; rather, they allowed the children to continue on in their way. Some children, during their play, requested for their GPS or wristbands to be removed—this was carried out immediately. The total time required for each child at the playspace was 1 to 1 ½ hours. This included time for consent/assent collection, time to familiarise the participant with the video equipment, and time for sensor/equipment placement and removal (Figure 31.2). While each activity has an expected time frame, it is known that this could vary according to each child’s particular needs. Parents or carers were present during the research. 563

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Figure 31.2

Research equipment.

Child Participants Children with disabilities were the sole participants recruited for this study. The following criteria were applied for recruitment: • • •

Child is between 5 years and 14 years. Child (or their parent) identifies as having a disability/ Child has played at the playground before in order to do the POE.

Ten children volunteered for the research (two Vic, three NSW, five Qld). Each child had diverse cognitive, neurological, and sensory disabilities; five used nonverbal communication. Children with disabilities and their families were recruited through non-government organisations, such as the Touched by Olivia Foundation and CFN.

Ethics and Consent The study received full ethics committee approval from Queensland University of Technology (QUT) as the lead university, as well as two administration reviews from the other research investigators’ universities—Federation University Australia (FUA) and the University Technology of Sydney (UTS). Parents were required to provide written consent for their child to participate in the study, and the children themselves were approached to assent to participate. The decision to seek children’s assent was based on the CRC, which states that whilst children and young people may not be able to fully weigh up the benefits and disadvantages of taking part in a study, they should still be involved in decisions that affect them. Children are recognised in the UNCRC as capable of providing ‘assent’ to the procedure being undertaken, for example, taking part in research activities. The information sheet for the children is in easy-read format, with clear information supported with pictures about the study. Even though their parents have provided consent for them to take part, the final decision is up to each child, and they do not have to take part unless they wish to. Another level of consent was gained after the research, seeking permission to use children’s own film data and their first names to make collective education films. Eight of the ten children and their parents provided image-release consent. 564

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Method of Data Analysis The study used triangulation to understand the effectiveness of inclusive playspaces in enabling children with disabilities play (Turner, Cardinal, and Burton 2015). Researchers can generate more insight for a theory or develop more complete understandings of a given phenomenon—in this case, playspaces—using multiple methods (Gibbert and Ruigrok 2010). Our study applied Creswell and Clark’s (2011) multiple steps of analysis, beginning with individual analysis of each data type, moving to merging step of the different data type findings, through to interpretive steps. This approach allowed us to bring together the different types of data to develop more complete understanding of the effectiveness of inclusive playspaces in enabling children with disabilities to play.

Agency—Expressed by Actively Engaging in an Interactive Environment This section focuses solely on the derived interpretation of children exercising agency in inclusive playscapes. Across all three sites, children were observed to be actively engaging in an interactive environment afforded by inclusive playspaces. This included interaction, not just with the various play elements, but also organising their play in response to the layout of the space. Phoebe shared her play strategy with us: Phoebe:  

Kinda like, I go to the closer things and work out. I do things that won’t take as long to get there. Researcher:  Ah, so you do things that are together. Phoebe:   Yeah. Phoebe, who is legally blind, was referring to how she negotiated the space by using the play items that were convenient and close by. Her strategy involved taking advantage of the immediacy of play items that were grouped together. All the children showed how they engage with the layout and built infrastructure (like perimeter fencing) as strategies to guide play and where they went. Both Ballarat and Landsborough offer more freedom of movement as large grass open-space areas are included within the limits of playspaces. This is illustrated by Mason, who was free to choose to walk and explore the perimeter of the open space and parklands that was part of the playscape at Landsborough. During this exploration, Mason had a serendipitous encounter with a dog and their owner walking on the outside of the playspace, proving what was a thrilling experience illuminated with squeals of excitement.

Agency Expressed through the Realisation of Ideas through Interaction with Others Throughout the research activities, children were not only interacting with the environment but with other playspace users as well. On review, the children’s films revealed the extent to which agency was enacted through their interaction with others. For the children 565

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with complex communication needs, this was modelled through their overt directing of people in their play, vocalisation, using Makaton (language programme that uses signs together with speech and symbols, to enable people to communicate). Zach and Jorjah used these types of interactions throughout their play. Rossetti et al. (2008) describes a particular conceptualisation of agency through using language and communication: [O]pportunity to initiate a topic or agenda, participate in a dialogue, move a conversation in a particular direction, interpret others, affect the person with whom one is in dialogue, make a point, interact as a peer, and be seen as a person with ideas to contribute and a personality to inject into the conversation. (p. 365) However, Zach (Figure 31.3) and Jorjah (Figure 31.4) were able to act with agency and successfully direct play episodes involving the people who were around them, despite using limited speech for communication. Jorjah liked to draw the people she knew into her play. The image that follows (Figure 31.4), along with her narrative, illustrates how she went about this. Jorjah:

I’m up! I’m up! Hey! You can’t get me. [Jorjah giggles.]

Shaking Carers Off—Agency Expressed as Resting and Exerting Control and Power Within Interactions Children’s agency was also expressed by children in the form of resistance when they actively avoided adult surveillance and defied attempts by adults to control their play or tell them what to do.

Figure 31.3

Zach’s shadow showing him redirecting various parts of play.

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Figure 31.4

Jorjah’s shadow showing her directing others as part of her play.

Hovering by carers particularly risked disrupting children’s flow and free play, as seen through Rhianna’s and Mason’s lenses. Their frustrations with the hovering were expressed throughout their body language, such as twiddling (Figure 31.5), rocking and clapping (Figure 31.6), as well as muttering and swearing under one’s breath. However, both used various techniques to resist the hovering, a common technique being to seek out space for only themselves. Mason did this through finding space where only he could go, for example, sitting alone on a large rock (Figure 31.6) and making his own play, seemingly to shake off the feeling of control by others. Rhianna did this by being on carousel swing for an extended period of time (for approximately 10 minutes), maintaining the slow movement of the carousel to ensure that adults would not try to approach her. Eventually, two younger children got on the carousel and made it go faster. Rhianna immediately got off, as if her solitude and ability to control the apparatus had been interrupted. Moving away when carers came into view was another strategy used by some of the children. Rhianna and Mason, in particular, were observed to actively change direction each time one of their carers started to approach them.

Stillness—A Form of Agency as Unique Peer Cultures Being still and observing one’s surroundings are key examples of agency expressed as unique aspects of peer culture relevant to play, space, and older children. Our interpretive lens for the children’s visual data allowed us to identify children being still as an important intentional activity. Other research lenses would likely place a negative interpretation on stillness as sedentary behaviour, as being inactive, or as doing nothing in their play (i.e. not playing), but the researchers of this study interpreted this 567

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Figure 31.5

Rhiannon twiddling the band.

Figure 31.6

Mason taking time out, enjoying his own space away from his carer.

action as deliberate and purposeful. For example, Rhianna’s GoPro footage showed her being still while peeking through a window, taking extreme care not to be seen. The intention of her actions was to quietly watch some toddlers playing (Figure 31.7). She did not engage with the toddlers at all but spent several minutes quietly watching them unnoticed from a concealed vantage point. 568

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Figure 31.7

Rhianna observing other children playing.

Agency as Interactions That Influence or Have Consequences for Others Rules, such as how long you could stay on the equipment, depended on how busy the playground was. Phoebe explains what this meant in terms of her play (Figure 31.8). Phoebe: ‘Cause there’s nobody here, I can be. So I can choose which one I can do. Like, you can have as many goes as you want if you are the only one there. Haiden also used his awareness of the playground rules and his understanding of taking turns, by asserting that it was his turn and asking to join others in play. Haiden: Stop, I want to go on the swing. Now it’s my turn. Thank you. The other children stopped the four-seater see-saw and waited for Haiden (as seen in Figure 31.9). During the various play sessions, children were involved in working with others and taking turns. This was particularly reinforced through the visual data from the GoPros. Slides were places where we observed children waiting to take their turn (Figure 31.10), particularly as children often used slides to walk up, not just slide down.

Discussion: Visual Data We found that the visual data provided more powerful insights than the established data types, such as our observations and spatial data. In some cases, the visual data contested potential assumptions that could be drawn from the spatial data and checklist 569

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Figure 31.8

Phoebe taking turns on the flying fox.

Figure 31.9

Haiden taking turns on the see-saw.

observations. One example is, it allowed us to see that being stationary did not mean the children were doing nothing. On the contrary, we could see that the children were active in observing others and the playspace elements, working out where to go next, or in some situations, actively avoiding the ‘hovering’ of their carers. All these insights would not have been possible if it weren’t for the children’s own visual data of their play. This particularly nuanced view of the play experience gave us, as researchers, insight into what each child could see, rather than simply through our 570

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Figure 31.10

Going down the slide.

own observations by watching them. Nassauer and Legewie (2021) concur, outlining that visual data provides not only a richer record of what happened during a situation (Jordan and Henderson 1995) but also allows for analyses in greater detail due to being able to review digital files or photographs, reconstruct exact sequences of interactions frame by frame, at micro-geography level. Visual data also increases reliability of findings, because multiple researchers can analyse the same data material, and the data enhances transparency and intercoder reliability (Nassauer and Legewie 2021).

Key Learnings: Agency, Children, and Play The ‘voice’ of each child with diverse cognitive, neurological, and sensory disabilities was expressed about inclusive playspaces in one of three locations in eastern Australian states. We stress the importance of ensuring children with disabilities can access their rights through play. Using video and spatial data to understand play experiences of children with disabilities is an innovative approach. As demonstrated, the concept of agency as an interpretive lens allowed a non-deficit way to identify the capabilities and strengths of the research participants as playspace users, and we were able to appreciate the versatility of the spaces for use by the children. We were able to appreciate the inventiveness of individual children, their often-complex modes of communication, and their mastery of elements of their play environments. This chapter shares poignant visual and spatial insights into the agency of play gleaned from the fieldwork. The use of videography to capture children’s play experiences and accounts provided rich body-time-space context that is critical for conveying designing for diversity. As researchers, we were not expecting the intimate insights 571

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the video data revealed to us, that we had not noticed through our observations of the same play episodes. For example, the efforts some children made to actively avoid their carers in the playspace, the antics of one child swearing under his breath whenever a carer issued an instruction to him, another quietly watching others playing but not making any effort to engage in play. Using video and spatial data to understand play experiences of children with disabilities proved to be an innovative approach and one worth developing in future studies of playspaces occupied by children. The visual data has been created into education awareness short films titled ‘Making play inclusive’ to help inform planning and design practice. The films can be viewed at https://makingplayspacesinclusive.wordpress.com/.

Conclusion This chapter presents participatory methodologies of child-led tours and self-filmed free play sessions that enabled the ‘voices’ of ten children with diverse cognitive, neurological, and sensory disabilities to be heard expressed about inclusive playspaces in three locations in eastern Australian states. Attention was given to children’s opinions, actions, and play cultures, enabling them to be recognised as experts in their own worlds. The findings share poignant, embodied visual-spatial insights into children’s play, with a specific focus on children’s use and expression of agency in inclusive playspaces. Children were observed using the playspaces strategically to make the most of their time, effort, and experiences, sometimes directing their own play, and other times leading others to play. Importantly, the children’s agency also extended to them resisting and actively avoiding adult surveillance and defying attempts by adults to control their play. This chapter has illustrated these different ways of expressing agency. These rich insights from this experiential data helps build understanding of inclusive playspace as specific geography, and the importance such playspaces have in the lives of children with disabilities and their families.

The Making Playspaces Inclusive website is a research outcome of the post-occupancy study of three inclusive playspaces located in eastern Australia. Visual data from the study, in the form of short films, can be accessed on the site. Stafford, Lisa, Burke, Jenene, Darcy, Simon, Trost, Stewart, Ahmadi, Matthew, & Pretorius, Rosie. 2019. Making Playspaces Inclusive. [Website]. https://makingplayspacesinclusive.wordpress.com/ The Making Playspaces Inclusive study enabled children to share their play experiences. Images produced by the children have been made into a short film. Phoebe, Jimmy, Zach, Jorah, Brianna, Mason, Rhiannon, Haiden. (Film Makers/Directors). 2019. Making Playspaces Inclusive: Directing and Observing is Play. [Film]. Edited by Rosie Pretorius. Making Playspaces Inclusive Project, initiative of Lisa Stafford and Jenene Burke, https://youtu.be/lr6KqLUejmA

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References Angell, C., Alexander, J. and Hunt, J. 2015. ‘Draw, write and tell’: A literature review and methodological development on the ‘draw and write’ research method. Journal of Early Childhood Research 13(1), pp. 17–28. Ashby, C., Jung, E., Woodfield, C., Vroman, K. and Orsati, F. 2015. ‘Wishing to go it alone’: The complicated interplay of independence, interdependence and agency. Disability and Society 30(10), pp. 1474–1489. Australian Children’s Education and Care Quality Authority. (ACECQA). 2018. National quality standards. [online] [Accessed on 10 October 2021] Available from: www.acecqa. gov.au/nqf/national-quality-standard Australian Human Rights Commission. 2019. National principles. [online] [Accessed on 10 October 2021] Available from: https://childsafe.humanrights.gov.au/national-principles Baxter, P. and Jack, S. 2008. Qualitative case study methodology: Study design and implementation for novice researchers. The Qualitative Report 13(4), pp. 544–559. Bernardi, F. 2020. Autonomy, spontaneity and creativity in research with children. A study of experience and participation, in central Italy and North West England. International Journal of Social Research Methodology 23(1), pp. 55–74. Burke, J. 2012. ‘Some kids climb up: Some kids climb down’: Culturally constructed playworlds of children with impairments. Disability and Society 27(6) pp. 965–981. Burke, J. 2015. Not just for the fun of it: Children’s constructions of disability and inclusive play through spatiality in a playspace. In T. Corcoran, J. White and B. Whitburn (eds.), Disability studies: Educating for inclusion. Rotterdam: Sense Publishers, pp. 3–22. Burke, J. and Claughton, A. 2019. Playing with or next to? The nuanced and complex play of children with impairment. International Journal of Inclusive Education 23(10), pp. 1065–1080. Claughton, A. 2017. Approaching play and inclusion. In V. Plows and B. Whitburn (eds.), Inclusive education: Making sense of everyday practice. Rotterdam: Sense Publishers, pp. 45–60. Claughton, A. 2020. Special needs, special play? Re-imagining play for children with disability (unpublished Thesis). [online] [Accessed on 10 October 2021] Available from: https://oatd.org/ oatd/record?record=vital%5C%3A14409 Cologon, K., Cologon, T., Mevawalla, Z. and Niland, A. 2019. Generative listening: Using arts-based inquiry to investigate young children’s perspectives of inclusion, exclusion and disability. Journal of Early Childhood Research 17(1), pp. 54–69. Connor, D., Gabel, S., Gallagher, D. and Morton, M. 2008. Disability studies and inclusive education ‒ implications for theory, research, and practice. International Journal of Inclusive Education 12(5–6), pp. 441–457. Connors, C. and Stalker, K. 2003. The views and experiences of disabled children and their siblings. London: Jessica Kingsley Publishers. Connors, C. and Stalker, K. 2007. Childhood experiences of disability: Pointers to a social model of childhood disability. Disability & Society 22(1), pp. 19–33. Convention on the Rights of Persons with Disabilities and Optional Protocol 2006. [online] [Accessed on 10 October 2021] Available from: www.un.org/disabilities/documents/convention/convoptprot-e.pdf. Convention on the Rights of the Child. 1989. [online] [Accessed on 12 August 2021] Available from: www.ohchr.org/en/professionalinterest/pages/crc.aspx Corsaro, W. 2005. The sociology of childhood. Thousand Oaks: Pine Forge Press. Creswell, J. W. and Plano Clark, V. 2011. Designing and conducting mixed methods research. 2nd edition. Thousand Oaks: Sage. Daelman, S., De Schauwer, E. and Van Hove, G. 2020. Becoming with research participants: Possibilities in qualitative research with children. Childhood 27(4), pp. 483–497. Davis, J. M. and Watson N. 2000. Disabled children’s rights in everyday life: Problematising notions of competency and promoting self-empowerment. The International Journal of Children’s Rights 8(3), pp. 211–228.

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Jenene Burke and Lisa Stafford Davis, J. M. and Watson, N. 2001. Where are the children’s experiences? Analysing social and cultural exclusion in ‘special’ and ‘mainstream’ schools. Disability and Society 16(5), pp. 671–687. Davis, J. M., Watson, N. and Cunningham-Burley, S. 2000. Learning the lives of disabled children. developing a reflexive approach. In P. Christensen and A. James (eds.), Research with children. Perspectives and practices. London: Routledge Falmer, pp. 201–224. Erwin, E., Maude, S., Palmer, S., Summers, J., Brotherson, M., Haines, S. and Peck, N. 2016. Fostering the foundations of self-determination in early childhood: A process for enhancing child outcomes across home and school. Early Childhood Education Journal 44(4), pp. 325–333. Fernelius, C. L. and Christensen, K. M. 2017. Systematic review of evidence-based practices for inclusive playground design. Children, Youth and Environments 27(3), pp. 78–102. Francis, M. 2003. Urban open space: Designing for user needs (Land and Community Design Case Study Series. Landscape Architecture Foundation). Washington, DC: Island Press. Gibbert, M. and Ruigrok, W. 2010. The “what” and “how” of case study rigor: Three strategies based on published research. Organizational Research Methods 13(4), pp. 710–737. Goodley, D. and Runswick-Cole, K. 2010. Emancipating play: Dis/abled children, development and deconstruction. Disability and Society 25(4), pp. 499–512. Heft, H. and Chawla, L. 2006. Children as agents in sustainable development: The ecology of competence. In C. Spencer and M. Blades (eds.), Children and their environments: Learning, using and designing spaces. Cambridge: Cambridge University Press, pp. 199–216. Higgins, N., MacArthur, J. and Kelly, B. 2009. Including disabled children at school: Is it really as simple as ‘a, c, d’? International Journal of Inclusive Education 13(5), pp. 471–487. Hill, M., Davis., J., Prout, A. and Tisdall, K. M. 2004. Moving the participation agenda forward. Children and Society 18(2), pp. 77–96. Holt, L. 2004. Children’s sociospatial (re)production of disability within primary school playgrounds. Society and Space 25(5), pp. 783–802. Horelli, L. 2007. Constructing a framework for environmental child-friendliness. Children, Youth and Environments 17(4), pp. 267–292. Horgan, D. 2017. Child participatory research methods: Attempts to go ‘deeper’. Childhood 24(2), pp. 245–259. James, A. 2010. Competition or integration? The next step in childhood studies? Childhood 17(4), pp. 485–499. James, A., Jenks, C. and Prout, A. 1998. Theorizing childhood. Cambridge: Polity Press. Jeanes, J. and Magee, J. 2012. Can we play on the swings and roundabouts? Creating inclusive play spaces for disabled young people and their families. Leisure Studies 31(2), pp. 193–210. Jordan, B. and Henderson, A. 1995. Interaction analysis: Foundations and practice. The Journal of the Learning Sciences 4(1), pp. 39–103. Kennedy, A. and Surman, L. 2006. The pedagogy of relationships. In M. Fleer (ed.), Early childhood learning communities: Socio-cultural research in practice. Pearson Education Australia, pp. 34–39. Loebach, J. and Gilliland, J. 2010. Child-led tours to uncover children’s perceptions and use of neighbourhood environments. Children, Youth and Environments 20(1), pp. 52–90. Lynch, H., Moore, A., Edwards, C. and Horgan, L. 2020. Advancing play participation for all: The challenge of addressing play diversity and inclusion in community parks and playgrounds. The British Journal of Occupational Therapy 83(2), pp. 107–117. MacArthur, J., Sharp, S., Kelly, B. and Gaffney, M. 2007. Disabled children negotiating school life: Agency, difference and teaching practice. The International Journal of Children’s Rights 15(1), pp. 99–120. Mayall, B. 2002. Towards a sociology for childhood. Thinking from children’s lives. Maidenhead: Open University Press. McVeigh, A. 2013. Self-determination and Queensland’s child protection system: The over representation of Aboriginal and Torres Strait Islander children. Alternative Law Journal 38(1), pp. 25–30.

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Through the Eyes of Children with Disabilities Miles, M. B. and Huberman, A. M. 1994. Qualitative data analysis: An expanded source book. 2nd edition. Thousand Oaks: Sage. Moore, R., Cosco, N. and Ringaert, L. 2005. Post occupancy evaluation of kids together park. Raleigh: North Carolina State University College of Design. Nassauer, A. and Legewie, N. M. 2021. Video data analysis: A methodological frame for a novel research trend. Sociological Methods and Research 50(1), pp. 135–174. Nind, M. 2008. Conducting qualitative research with people with learning, communication and other disabilities: Methodological challenges. [online] [Accessed on 10 October 2021] Available from: http://eprints.ncrm.ac.uk/491/ Nind, M., Flewitt, R. and Payler, J. 2010. The social experience of early childhood for children with learning disabilities: Inclusion, competence and agency. British Journal of Sociology of Education 31(6), pp. 653–670. Oliver, M. 1990. The politics of disablement. London: The Macmillan Press Ltd. Olli, J., Salanterä, S., Karlsson, L. and Vehkakoski, T. 2021. Getting into the same boat—Enabling the realization of the disabled child’s agency in adult—Child play interaction. Scandinavian Journal of Disability Research 23(1), pp. 272–283. Olli, J., Vehkakoski, T. and Salantera, S. 2012. Facilitating and hindering factors in the realization of disabled children’s agency in institutional contexts: Literature review. Disability and Society 27(6), pp. 793–807. Pramling Samuelsson, I. and Johansson, E. 2006. Play and learning—Inseparable dimensions in preschool practice. Early Childhood Development and Care 176(1), pp. 47–65. Priestley, M. 1998. Childhood disability and disabled childhoods: agendas for research. Childhood 5(2), pp. 207–223. Punch, S. 2020. Why have generational orderings been marginalised in the social sciences including childhood studies? Children’s Geographies 18(2), pp. 128–140. Rossetti, Z., Ashby, C., Arndt, K., Chadwick, M. and Kasahara, M. 2008. ‘I like others to not try to fix me’: Agency, independence, and autism. Intellectual and Developmental Disabilities 46, pp. 364–375. Royal Commission into Institutional Responses to Child Abuse. 2017. Final Report. [online] [Accessed on 10 October 2021] Available from: www.childabuseroyalcommission.gov.au/ final-report Shakespeare, T. 2006. Disability rights and wrongs. Scandinavian Journal of Disability Research 9(3–4), pp. 278–281. Shakespeare, T. and Watson, N. 1998. Theoretical perspectives on research with disabled children (pp. 13–27). In C. Robinson and K. Stalker (eds.), Growing up with disability. London: Jessica Kingsley Publishers. Stafford, L. 2017a. ‘What about my voice’: Emancipating the voices of children with disabilities through participant-centred methods. Children’s Geographies 15(5), pp. 600–613. Stafford, L. 2017b. Journeys to play: Planning considerations to engender inclusive playspaces. Landscape Research 42(1), pp. 33–46. Stafford, L., Adkins, B. and Franz, J. 2020. Bounded at the driveway’s edge: Body-space tensions encountered by children with mobility impairments in moving about the neighbourhood street. Children’s Geographies 18(3), pp. 298–311. Stafford, L., Harkin, J., Rolfe, A., Burton, J. and Morley, C. 2021. Why having a voice is important to children who are involved in family support services. Child Abuse and Neglect 115, p. 104987. Stake, R. E. 1995. The art of case study research. Thousand Oaks: SAGE Publications. Turner, S. F., Cardinal, L. and Burton, R. M. 2015. Research design for mixed methods: A triangulation-based framework and roadmap. Organisational Research Methods 20(2), pp. 243–267. UNICEF. 2018. The children’s report: Australia’s NGO coalition report to the United Nations committee on the rights of the child. [online][Accessed on 10 October 2021] Available from: www.unicef.org.au/Upload/UNICEF/Media/Documents/Child-Rights-TaskforceNGO-Coalition-Report-For-UNCRC-LR.pdf

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Jenene Burke and Lisa Stafford United Nations. 2006. Convention on the Rights of Persons with Disabilities. Preamble. [online] [Accessed on 10 October 2021] Available from: http://www.un.org/esa/socdev/ enable/rights/convtexte.htm Van Melik, R. and Althuizen, N. 2020. Inclusive play policies: Disabled children and their access to Dutch playgrounds. [Online] Tijdschrift voor economische en sociale geografie. https:// doi.org/10.1111/tesg.12457 Vanner, C. and Kimani, M. 2017. The role of triangulation in sensitive art-based research with children. Qualitative Research Journal 17(2), pp. 77–88. Wenger, I., Schulze, C., Lundström, U. and Prellwitz, M. 2021. Children’s perceptions of playing on inclusive playgrounds: A qualitative study. Scandinavian Journal of Occupational Therapy 28(2), pp. 136–146. Wickenden, M. and Kembhavi-Tam, G. 2014. Ask us too! Doing participatory research with disabled children in the global south. Childhood 21(3), pp. 400–417. Woolley, H. and Lowe, A. 2012. Exploring the relationship between design approach and play value of outdoor play spaces. Landscape Research 1, pp. 1–22. Yin, R. K. 1994. Case study research: Design and methods, 2nd edition. Thousand Oaks: Sage Publications. Yin, R. K. 2003. Case study research: Design and methods. Thousand Oaks: SAGE Publications. Yin, R. K. 2009. Case study research: Design and methods. 4th edition. Thousand Oaks: Sage Publications. Zosh, J. M., Hirsh-Pasek, K, Hopkins E. J., Jensen H., Liu, C., Neale, D., Solis S. L. and Whitebread, D. 2018. Accessing the inaccessible: Redefining play as a spectrum. Frontiers in Psychology 9, pp. 1–12

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32 DISABLED CHILDREN’S ACCESS TO MUSIC Music’s Transformational Potential and Music Therapy’s Dis/enabling Role in Making Music Accessible Maren Metell Introduction Participation in music is both a human right and a disability right. (Lubet 2011, p. 57) Many children engage with music through listening, moving, dancing, and singing; they create music spontaneously as part of their play and their social interactions. How they engage in music, how they learn and transmit music, reflects their social identity (Campbell 2007). They are born with the innate human ability to take part in music (Blacking and Byron 1995). The United Nations Convention on the Rights of the Child (1989) (CRC) sees children as subjects in their own right, neither the property of their parents nor objects of charity, but as individuals with rights and responsibilities. The Convention acknowledges children’s rights to be heard, to feel safe and protected, to have access to resources and opportunities, and to participate. The right to take part in the activity of doing music can be found in both the CRC and the United Nations Convention on the Rights of People with Disabilities (2006) (CRPD). Both the CRC and the CRPD emphasise the importance of access to play and to cultural life for disabled children. The CRC states in Article 31 that: States Parties recognize the right of the child to rest and leisure, to engage in play and recreational activities appropriate to the age of the child and to participate freely in cultural life and the arts.

DOI: 10.4324/9781003056737-43

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While the CRPD states in Article 30 that: States Parties recognize the right of persons with disabilities to take part on an equal basis with others in cultural life, and shall take all appropriate measures to ensure that persons with disabilities: (a) enjoy access to cultural materials in accessible formats. In their General Comment 17 on Article 31, the UN CRC Committee (2013) emphasises the importance of play for children’s well-being and points, based on their reviews of its implementation, that some groups of children, including disabled children, face difficulties in enjoyment of their rights. They also point to the importance of creating ‘time and space for children to engage in spontaneous play, recreation and creativity, and to promote societal attitudes that support and encourage such activity’ (UN Committee on the Rights of the Child 2013, p. 3). Disabled children can be excluded from musical engagement in early life for different reasons. Children with complex health issues during pregnancy and/or early childhood can experience being hospitalised with and without their parents over longer periods. There are different types of barriers that make access to play and music difficult. These include lack of physical accessibility, lack of public transport, socioeconomic issues, lack of assistive technologies, and attitudes towards disability (UNICEF 2013). These barriers exist also in music education (e.g. Lubet 2009). Disabled children are often in a cycle of support and intervention and can experience less access to leisure activities but are often offered therapy where play can be transformed into a site for surveillance and a mechanism for intervention (McLaughlin, et al. 2016; Mallett and Runswick 2014). Music therapy can be one of the therapies offered, and the role of music therapy in relation to children’s rights is discussed in this chapter. Music therapy has been defined as the relationship between music and health (Stige 2002) and is practised and conceptualised in different ways. Music therapy seems to be developing in two different directions—towards a biomedical model perspective and towards a psycho-socialcultural model (e.g. Ansdell and DeNora 2012). Music therapy approaches that build upon an individual model and focus on symptom reduction are still prevailing in many countries. The American Music Therapy Association defines music therapy as: Music Therapy is the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program. (American Association for Music Therapy 2005) A definition that is aligned with a medical and individualised understanding of disability. And while working on individual goals might be as relevant for disabled children as non-disabled children, there is a body of music therapy based upon a behavioural paradigm and that considers disability as being located in the individual 578

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and therefore, for instance, considers social skills training (e.g. Yum et al. 2020) as a legitimate goal by itself. Music therapy approaches that build on a medical model of disability are likely to also think about the music therapist as the capable helper. As Runswick-Cole and Curran (2014, p. 87) assert for disciplines in context of disability: [T]here has been a lack of critical engagement with a host of (negative) assumptions about the lives of disabled children, which permeate every day talk about, and policy and practice for, disabled children. Disability studies scholars have criticised the field of music therapy for focusing on cure and/or being based on the medical model of disability (Lubet 2011; Straus 2011, 2014). However, Straus (2014) considers that music therapists can provide spaces for mutual music making, enhancing indigenous culture. Cameron (2014) compares the situation of music therapy with the one of occupational therapy 25 years ago and quotes Abberley (1995, p. 227 cited in Cameron 2014): If occupational therapy, through its stance of significant self-improvement, systematically obscures the social causes of disablement, then in the long run it can be of little use to those of its clients that cannot be ‘cured’. Yet if it employs an analysis which incorporates the structural holism of the Disability movement, it undermines its own conceptual basis. What Cameron suggests and what is reflected in community music therapy thinking is that music therapists should be allied to the community and not allied to medicine. When music therapy is linked to community development and social change, boundaries with other fields as community music and some approaches within music education get more blurry. As Lubet (2011, p. 59) states: Music as a human right is an issue worthy of consideration for its own sake. But the critical examination of music in its social context also provides lessons about human rights in general and disability rights in particular, of interest to disability studies per se, but also beyond, to many other fields and situations. There is a growing interest in a human rights perspective in music therapy (see Krüger 2020). Within the community music therapy literature, a human rights perspective is implicitly present through the focus on collaboration, empowerment, and social change (Ansdell 2002, Pavlicevic and Ansdell 2004, Rolvsjord 2010) and its characterisation as participatory and ethics-driven (Stige and Aarø 2012). Stige and Aarø (2012) discuss music therapy as a rights-based practice. Curtis and Vaillancourt (2012) developed the children’s right to music to promote knowledge on human rights of disabled children and to promote resources to ensure these rights. 579

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In what follows, I briefly locate myself in relation to the issues under consideration within this chapter and introduce the particular national context considered: Norway. I describe how the importance and meaningfulness of music for children have been considered from different disciplines. I provide a background on the policy and everyday life level of music rights in Norway and discuss music therapy’s role in making music and music’s affordances (what music offers) for health and well-being accessible and ensuring the right to music. The chapter ends with a discussion of the context-transforming potential that music can provide for disabled children and their communities.

Positionings The social context I am writing this from is Bergen, western Norway. While acknowledging the fluidity and temporality of identities, the position I write from is a privileged one as a White, cisgender, straight, non-disabled woman. My educational background is in both music, music therapy, and education in the context of visual impairment. I am currently completing my PhD in music therapy, exploring together with disabled children and their families what makes music accessible and meaningful: the when, how, and why. I have also just returned to practice, working full-time as a music therapist in a public school for children with support needs. I am well aware that both music therapy and ‘special’ education are contested fields in many ways, and want to provide some background on my own stance here. My interest in the topic of children’s rights and music’s accessibility has grown out of my personal background and experience. I have been studying and working in the context of music therapy and inclusive education for the last 16 years. First studying music and rehabilitation sciences in Berlin, where I became aware of critical approaches to education and disability (Freire 1970; Jantzen 1976). Then in Bergen, where I started to train as a music therapist in an environment where resourceoriented approaches (Rolvsjord 2010) and community music therapy (Pavlicevic and Ansdell 2004; Stige and Aarø 2012) are central. These perspectives question the individual model of disability and are aligned to the Nordic relational model of disability (Tøssebro 2004). The approach taken here is informed by disability studies, disabled children’s childhood studies (Runswick-Cole, Curran and Liddiard 2018), and contemporary perspectives in the fields of music therapy (Hadley 2006; Stige and Aarø 2012, Baines 2013, 2021), music and health, and music sociology (DeNora 2000; MacDonald, Kreutz and Mitchell 2012). I understand dis/ability as something that depends on the environment and, therefore, as social phenomenon (Oliver 1990; Barnes and Mercer 1996; Schillmeier 2010). Disability studies challenge normative understandings and the societal dimension of disabling structures. I have been interested in how disability studies could and should inform music therapy (Metell 2014; Metell and Stige 2016; Metell 2019; Pickard et al. 2020). The research project that I draw on in this chapter is positioned in a qualitative research paradigm and informed by participatory action research, emancipatory 580

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disability research, and ethnography. The project researches, together with families with disabled children, how music is a space where people of different ages, backgrounds, and abilities can participate in and co-create ideas, activities, situations, and identities. To analyse and represent the various practices involved in these material and embodied processes, I use drawings. The project received ethical approval from Nordoff Robbins Ethical Committee. Initial informed consent was being sought through written consent forms from the parents and the friend that participated at the beginning of the project (see Appendix for both documents). As the project emerged in collaboration with the participants, consent was not one event but rather a process that needed to be negotiated throughout the project. Similarly, the consent of the children was a process through the whole project where I aimed constantly to be vigilant to the expressions of the children. The names are partly real names and partly pseudonyms.

Why Music and Musicality Matter for Children We are playing a song called ‘Vi er alle elleville’ (‘We are all wild’). It is in the third round of the verse that Ava takes a bell rattle out of Jonas’s (her father) hand, and he then offers a blue shaker to her right hand and she takes it and shakes both hands occasionally but mostly just seems to be listening, looking around. However, in the fourth silence of the song, she raises both hands and shakes the shaker at shoulder height, and we start off singing again. Ava is now holding both hands on shoulder

Figure 32.1

Ava being the maestro in the song ‘Vi er alle elleville’.

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height and plays the shaker with confidence, looking to be enjoying herself. Her gestures and the seriousness make her look like a maestro, and she is, in fact, since it is she who begins the song once more after we pause. People orient towards her, look at her, and smile as we all continue to play. The context for this vignette is my PhD research, where I worked together with disabled children and their families to explore how, when, and for whom music gets accessible and meaningful. Ava and her family have been participating at the music café, a social and musical meeting space for families with disabled children, for three months at the time of this moment. In this description, we can see how music sometimes makes agency visible, makes participation possible and visible for others. Ava does something new here, something that I hadn’t observed outside music. However, music provides a structure to participate and a meaningful context to play a shaker and gives Ava the possibility to perceive that her actions have an effect (it’s quite powerful to start off a group of ten people by raising a rattle). Ava, in this example, contributed actively to making music ‘work’ in terms of cocreating the socio-musical space. Moreover, her actions and her active role were observed by both her family and the other music café members that were oriented towards her.

Music in Early Life Why and how music matters for children have been researched by psychologists, ethnologists, and anthropologists. Researching early infant interaction, Trevarthen and Malloch (2000) have shown that children are born to be sociable, to communicate, and to share meaning. The early interactions between infants and caregivers have been described as ‘musical’ (understood as the capacity to take part in music) and ‘dancelike’, complex skills that infants were not credited to have until the 1960s (Malloch and Trevarthen 2009). Psychologists (e.g. Nakata and Trehub 2004) similarly describe musical qualities of ‘infant-directed’ speech, the way caregivers talk and use gestures with their infants, using pitch, rhythm, and repetition. Amodal perception, the capacity to process and translate a sensory impression across modalities (Stern 1985), plays a central role in early interaction. Early interaction is therefore accessible to pairs with different perception styles (e.g. deaf child and hearing caregiver) but depends on the capacity of the people involved to adapt their interaction style. Malloch and Trevarthen (2009) propose the theory of communicative musicality which is characterised by three parameters: pulse, quality, and narrative. Human beings are born with what they call a system for intrinsic motive formation, a system that seeks inter-subjectivity and makes cultural learning in companionship possible (Trevarthen and Aitken 2001). From the field of biomusicology, Eckerdal and Merker (2009, p. 251) suggest that: [T]he infant’s primary gate of admission to the ritual of human culture is the action song and related games with a formal structure. They provide a first forum for the infant’s inclusion in and sharing of a ritual performance, 582

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beginning with things like the lapping of hands as a ritual sign of approval and excitements. This then can be linked to the idea that participation in musicking (music as process and socially situated action [Small 1998]) as a form of early interaction links to the acquisition of culture (this kind of argument is both present in biopsychology (Trevarthen 2001) and critical education (Freire 1970; Jantzen 1976)).

Music and Play In a comment to the CRC Article 31, the International Play Association (IPA) (IPA 2013, np) defines play as: Children’s play is any behaviour, activity or process initiated, controlled and structured by children themselves. Play is non-compulsory, driven by intrinsic motivation and undertaken for its own sake, rather than as a means to an end. It may take infinite forms but the key characteristics of play are fun, uncertainty, challenge, flexibility and non-productivity. The IPA describes barriers linked to inaccessible facilities and environments, negative attitudes, a lack of appropriate policies, and adult-centred approaches to disabled children’s play. They understand these barriers as universal; however, they will manifest differently depending on the context. Music matters not only for fostering intimate bonds between a child and its family but also for play. Holzman (2010) links play to appropriating and creating culture, and for me, her ideas can easily be linked to musicking as play. And play itself is an important theme here, both through its transformational affordance and its link to development for everyone and its importance in context of disabled children, where play often gets pathologised (Goodley and Runswick-Cole 2010). Goodley (2007a, 2007b), drawing on Deleuze and Guattari’s work, invites to consider both teacher and students and parents ‘becomings’ rather than ‘beings’ and discusses the concept of ‘lines of flight’. Following Goodley’s understanding, music as play could offer ‘lines of flight’ for both disabled children and people around them always becoming.

Music and Its Links to Health and Well-Being The field of music psychology describes music’s complex relationships with health and well-being. MacDonald et al. (2012) present a number of possible reasons to consider music in contexts of health and well-being: music is ubiquitous, emotional, engaging, distracting, physical, ambiguous, social, communicative, and affects both behaviour and identity. From a sociological perspective, music can be considered a ‘technology of self ’ (DeNora 2000). Ruud (2013, 2020) explores musicking as cultural immunogen practice, building on health psychology and its healthy behaviours. Musicking is 583

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understood as a technology for health. In Ruud’s (2020, p. 2) words, ‘[a] cultural immunogen thus implies the handling of cultural artifacts or artistic expressions within the context of health-related behaviour’. Participation in music is a human and disability right (Lubet 2011), and these perspectives show how relevant access to music is for disabled children to increase their health and well-being. Taking into account all the dimensions of music and the activity of musicking, music matters for children for bonding with their families, for providing a structure for participation, for taking part in play and culture and a technology for well-being. Music can both be considered a need and a potential, but it is also a right, as will be explored in the next section.

Disabled Children’s Rights and Realities in Norway The CRC has a strong standing in Norway. In 1981, Norway appointed the world’s first ‘barneombud’ (ombudsman for children) and, ten years later, the world’s first ‘barneministeren’ (children’s minister). The CRC was ratified in 1991 and incorporated in domestic law of Norway in 2003. However, Norway has been criticised for not respecting the CRC sufficiently (Civil Society Coalition Norway 2019). The report from the Civil Society Coalition Norway (2019) shares several concerns, including the CRPD not being incorporated in national law and the slow process of transitioning from the medical model to the human rights model of disability. The Committee is also concerned that disabled people, and particularly children, face barriers to participating in cultural life on an equal basis with others. In recent national reports of disability advocacy organisations, these concerns are shared and confirmed. In a survey of the Funksjonshemmedes Felles Organisasjon (2019) [Norwegian Federation of Organisations of Disabled People], people share that they participate in cultural life but also experience barriers as lack of information about accessibility of cultural venues, lack of universal design, lack of transport and access to assistance, and attitudes towards disability that discriminate disabled people. The report ‘Barriers’ of the organisation Unge Funksjonshemmede [Disabled Youth] (2017) points to lack of accessibility, transport, and assistance. They suggest that local authorities should report what they have done to make their cultural activities accessible and what is left to do to meet the needs of disabled children and youth. The organisation has, at the end of 2020, received funding for working on an advisory document for inclusive cultural life for those providing activities. There has also been a study that researched together with disabled children and youth their experience of access to leisure Fritid for ALLE (Leisure for ALLE). This study has been funded by the NGO Redd Barna (Save the Children) (2021) as part of a campaign based on the CRC (all children have the right to play and leisure). The report shows how disabled children and youth experience not being listened to, lack of accessibility of venues and transport, lack assistance to be able to join leisure activities, how the assistance is linked to the municipality where children live in, being treated like a small child, and being excluded from activities in school. 584

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The Civil Society Coalition Norway (2019, p. 33) (a cooperation of civil society organisations) states: Barriers in the form of inadequate physical accessibility, financial and human resources, transport and lack of accessible information prevent disabled people from participating in cultural events, leisure activities, recreation and sport. There is a discrepancy between the commitment to the rights of disabled children on a policy level and the actions taken in everyday practice. There are ongoing initiatives that will provide actors in cultural life with advice on how to do better, and it will be interesting to observe if changes will happen. Based upon my own experience working as an adviser to children with visual impairments and their families and of organising small community music projects for families with disabled children, families often feel isolated and in a permanent struggle to find their ways through the health and education system. Music can be a resource that is not as accessible or not perceived a priority when life is complicated and stressful. Moreover, early childhood music groups can often be less accessible for families with disabled children (Metell and Larsson 2018).

Music Therapy and Its Role in Making Music Accessible and Promoting Disabled Children’s Rights The problem, as I assess it, is that music therapy is both progressive/disruptive and ableist, based on the medical model and the social model, aligned with disability advocacy movements, and allied with medicine. It is a field characterised by contradictions and contradictory practices. Music therapy for disabled children interacts with professional contexts and their understandings of disability. Krüger (2020) argues that music therapy can take place in the tension between what an individual child needs and wants and what the community/society has to offer. The music therapist can, through a resource-oriented approach, sometimes act on the behalf of the child (Krüger 2020). While I agree that this would be an important role of the music therapist, a precondition is that the music therapy approach builds on a human rights/social model of disability and considers the disabled child as the expert for its own perception, communication style, and life. Through the last years, there has been a growing body of resources and literature from neurodivergent/disabled music therapists, for instance, the chapter on neuroqueering of music therapy of Leza (2020) and Shaw’s (2022) work on ableism in music therapy. Further, there are advocacy Facebook groups and pages that aim to educate the field as neurodiversity for music therapists (e.g. Neurodiversity for music therapists 2022). They challenge the field to develop and to address the systemic ableism within the profession and to build a more inclusive profession and discipline. Norwegian music educator Skogdal (2015) questions why disabled children are likely to meet a music therapist and not a music teacher in culture school (the public music school in Norway). I have questioned this too (Metell 2014) and agree that 585

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it should not be the case that when a disable child seeks, for instance, piano lessons, they are instead offered music therapy. Perhaps even more importantly, however, the question is what kind of role the music therapist is taking and what the child and the music therapist are focusing upon. Is the focus on such extramusical and maybe even ableist goals as eye contact or reduction of stimming? Or is the focus on music, based on the child’s abilities and interests? The role of a community music therapist can be considered to be a multifaceted facilitator (Procter 2013), making the affordances of music available for the community and especially to those that, for different reasons, experience challenges in accessing music. Music therapy can both be a practice that makes music accessible and not accessible for disabled children, and often, music therapists might find themselves in between these two poles. There is practice that bases itself on the neurodiversity paradigm, and there is music therapy practice aligning itself to behavioural and medical perspectives, but most practice is probably somewhere in between. From my perspective, more critical consciousness is needed. Music therapists are trained to react sensitively to musical expressions and personal needs and might be able to facilitate disabled children’s access to music both through working directly with children and also by creating more accessible music ‘offerings’ in communities. While there are perspectives in music therapy that build upon social/affirmative/ human rights models of disability, the field as a whole can and should do more. This would necessitate thinking critically and constructively about the theoretical framework that is used to explain why and how music (therapy) works, to question ableist aims (as, for instance, eye contact, reducing stimming) both on more structural levels but also in everyday music therapist’s lives and practices. It would also require the therapist to question their own learned and internalised ableist understandings and to centre disabled children’s own perspectives and those of disabled adults who are willing to share their experiences of their childhood. Finally, it is important that the ‘radical’ music therapist—and this is what I am calling for, a radical practitioner—base the aims of working together on what the child expresses as their desire and interest and to advocate for children’s right to music.

Children’s Musicking Rights It is the fourth time that I visit Christine and Adrian in their home in the context of the pilot project for my PhD, where the aim was to explore how a neurodiverse family and a music therapist can co-create knowledge on musicking and its meaning and accessibility. Christine has picked up the keyboard from the loft (they hadn’t been playing on it for two years), and we have been sitting on the ground, playing. Adrian is smiling and playing with both hands, looking from the keyboard to Christine and me, and Christine smiles. Christine exhales: Why haven’t I thought about this before? Because I only think training, training, training! Christine, Adrian’s mother, told me that they were interested in taking part in my research project because they wanted to figure out how they could use more music, especially to make training (exercises from the physiotherapist) more enjoyable for 586

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Adrian. Adrian was 1 year old as the project started. They clearly showed, through movement and smiling, that creating music together with his loved ones was something that he appreciated/enjoyed. Due to a postnatal stroke resulting in cerebral palsy, the family was expected to do a lot of exercises which, according to Christine, left very little time to just enjoy being together. Adrian so clearly enjoyed music—for music’s sake. By demonstrating this to Christine, the interaction between us allowed Christine to change her mind about the focus of our work together. Having a good time together became the new focus, instead of physiotherapy. From my experience working with families, Christine’s experience is a common one. Depending upon the complexity of the situation of the disabled child and their family and the support they are receiving, they might be in a battle with the system. This is also reflected in the literature on disabled children and their families (see, for instance, McLaughlin et al. 2016). Further, as the family might have a gatekeeper function for music in the first years, the child’s access to music might be limited. Rediscovering and cultivating musicianship (Pavlicevic and Ansdell 2009) can therefore be a way to return music back to everyday life. This then points to the role of families, both in making music accessible by having musical things available and, more importantly, in recognizing the child’s needs for mutual enjoyable interaction. The material from the music café shows several examples of negotiation processes and examples when a disabled child takes the lead introducing a new activity or negotiating the design of an ongoing activity. For instance, Mikael, a 3-year-old child, would playfully hide under the parachute, and we would start to sing ‘Hvem er borte’ [Who is away], an activity where one or several children hide under the parachute and the other people around ask, ‘Mmmm, who is away?’ and find the child. Another example is Jonathan, who seems uncomfortable sitting and listening to adults talking and stays up and orients towards the door and comes back as soon as we start singing their favourite song (the Norwegian version of ‘The wheels on the bus’). The transcript that follows shows how Ava and their family and me sing the Norwegian version of ‘The wheels on the bus’. By making a pig’s grunt noise, a sound that Ava has just learned, Ava introduces new passengers for the bus as Jonas asks, ‘Is there a pig on the bus?’ And we then start to sing, ‘The pigs on the bus say [and then doing pig grunts]’, and Ava looks very happy. To take part in collaborative activities provides children with the possibility of experiencing that they are important contributors of meaning to their community. These experiences (of everyone involved, not only the children) of playing together might promote playing in other contexts. Simultaneously, the children and their families bring their expertise regarding how to do music (together). Play can be considered as ‘developmental’ at all age (Holzman 2010). I do not think these situations as ‘play-as-progress’, looking at play as a means for normalisation (Beckett et al. 2020), but as ecologies where all people involved can grow together. There are several preconditions for these ecologies and environments being accessible, as I want to illustrate with another moment from the music café. The preceding illustration shows a moment of the music café where two children lie on the floor and their caregivers and I lie and sit around them. We are all under 587

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Figure 32.2

The pig in ‘The wheels on the bus’.

a blue-green-red-and-yellow-coloured parachute, and I am playing on a pentatonic kalimba. Both children seem to be fascinated by the strong colours and look very attentively up into the parachute. Mia makes an upgoing sound which is immediately answered by Rita, Mikael’s mother, both sounds matching the pitch of the kalimba. What is visible in the micro-analysis of the video material is how everyone involved co-creates this situation of musical togetherness. Mikael’s and Mia’s family members join me sitting under the parachute, appreciating the children’s interest in it, and respond sensitively to movements and sounds. There seems to be a shared responsibility to be together in this space, and we keep under the parachute for around ten minutes. I consider these kinds of musical spaces as opportunities for everyone involved to be together in mutual interactions and as learning opportunities for doing so. The examples shared earlier illustrate different preconditions for accessibility. There is the physical environment that is accessible (here the music café location was not perfect, but in general this would mean physical accessibility both in terms of parking and public transport, accessibility and surroundings that facilitate to be comfortable in terms of lighting, sound environment, and being in comfortable positions in the room). The artefacts involved have different qualities and sensory 588

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Figure 32.3

The accessibility of the parachute.

affordances. There is the parachute that both offers strong colours when lying under a different lighting and a tent-like atmosphere and also seems to facilitate playfulness and spontaneous actions of both children and their family members. Some of the shakers have shown to be more accessible than others, which might be linked both to form, colour, size, and sound. There are songs as ‘The wheels on the bus’ that were brought to the project by a family, and most children had a previous relationship to songs that seem to facilitate participation through their musical structure as the song ‘Vi er alle elleville’ (‘We are all wild’). Activities are adapted to meet different needs, for example, through the use of signing along, using song cards, pitch, and tempo (this is, however, a complex issue, as one adaption might increase accessibility for one child but present a barrier for another child). Finally, there is a willingness to let the children lead what happens and to accompany them and create a space where they can feel comfortable. Sounds and actions are responded to, and there is presumed competence in this performance, a shared sense that the children are competent actors. There is a shared mutual care for being together in this space. All these preconditions influence how a disabled child is guaranteed their right to music, to enter and engage over time in music. The right to music is also linked to the right to participate. In the previous examples, children take the lead in activities and start new ones.

Concluding Thoughts The right to music matters, as it provides the legal framework for working towards a society where disabled children have access to music. Access to music is important both for the sake of music itself and also as musicking might provide the possibility 589

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to ensure other rights as participation. The discrepancy between the policy level and the everyday practice points to a need for more nuanced policies but, at the same time, to the need of developing practice and challenging approaches and models that create barriers for disabled children. Music therapists can contribute to ensuring the right to music for children co-creating accessible music spaces with children, but along with music educators, parents, teachers, kindergarten professionals, they need to question ableist aspects and structures of their own thinking, approaches, and contexts. Building inclusive music spaces is not only important for ensuring disabled children’s right to music but also provides possibilities for building more inclusive communities.

‘Right to participate in artistic and cultural life’ The right to take part in the activity of doing music is enshrined in the Convention on the Rights of the Child and the Convention on the Rights of People with Disabilities (2006), Article 30. However, disabled children can often experience that access to music and cultural life can be difficult for various reasons: The Civil Society Coalition Norway (2019, p.33): Barriers in the form of inadequate physical accessibility, financial and human resources, transport, and lack of accessible information prevent disabled people from participating in cultural events, leisure activities, recreation, and sport. Disabled children and youth from the study ‘ Leisure for All’ say: I think you get these attitudes of the adults as child, it is as it is, your disability makes that you can’t participate and not that it’s the society that makes that you can’t participate. (Redd Barna 2021, p. 15) It’s not everything accessible and I can’t always go where I want. It happened that I had to stay outside and wait. I didn’t feel welcome. (Redd Barna 2018, p. 21) The Cultural Inclusion Manifesto: Cultural institutions are extensions of schools and the wider community. They provide unique learning opportunities and promote vital educational experiences.

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Additional resources: Redd Barna 2021. Fritid for alle - uten fordommer. Fortellinger om fritid fra barn og ungdom med funksjonsnedsettelse [Leisure time for everyone - without prejudices. Narratives on leisure time from children and youth with disability]. [Online]. [Accessed 20 April 2022]. Available from: https://www.reddbarna.no/ content/uploads/2021/06/ReddBarna_fritid_for_alle_2021.pdf https://youthmusic.org.uk/reshape-music (The Reshape report explores the lived experience of disabled musicians in education) https://www.drakemusic.org (Drake Music is a disabled-led organization with focus on music, disability, and technology)

References American Association for Music Therapy. 2005. What is music therapy? [online] [Accessed on 20 April 2022] Available from: www.musictherapy.org/about/musictherapy/www.musictherapy.org/about/musictherapy/ Ansdell, G. 2002. Community music therapy & the winds of change. Voices : A World Forum for Music Therapy 2(2). Ansdell, G. and DeNora, T. 2012. Musical flourishing: community music therapy, controversy, and the cultivation of wellbeing. In K. G. MacDonald and Mitchell, L (eds.), Music, health, and wellbeing. Oxford: Oxford University Press, pp. 97–112. Baines, S. 2013. Music therapy as an anti-oppressive practice. The Arts in Psychotherapy 40(1), pp. 1–5. Baines, S. 2021. Anti-oppressive music therapy: updates and future considerations. The Arts in Psychotherapy 75, p. 101828. Barnes, C. and Mercer, G. eds. 1996. Exploring the divide: Illness and disability. Leeds: Disability Press. Beckett, A. E., Encarnação, P., Chiu, C. and Ng, S. T. 2020. Play for disabled children in Taiwan and Hong Kong: Parent perspectives. Journal of Disability Studies in Education 1(1–2), pp. 90–120. Blacking, J. and Byron, R. 1995. Music, culture, & experience: Selected papers of John Blacking. Chicago: University of Chicago Press. Cameron, C. 2014. Does disability studies have anything to say to music therapy? And would music therapy listen if it did? Voices: A World Forum for Music Therapy.14(3). Campbell, P. S. 2007. Musical meaning in children’s cultures. In L. Bresler (ed.), International handbook of research in arts education. Dordrecht: Springer, pp. 881–897. Civil Society Coalition Norway. 2019. Alternative report to the UN Committee on the rights of persons with disabilities. [online] [Accessed on 20 April 2022] Available from: https://ungefunksjonshemmede.no/rapport-til-fn-funksjonshemmedes-rettigheter-brytes-i-norge/ Convention on the Rights of Persons with Disabilities and Optional Protocol. 2006. [online] [Accessed on 20 April 2022] Available from: www.un.org/disabilities/documents/convention/convoptprot-e.pdf. Curtis, S. and Vaillancourt, G. 2012. The children’s right to music project. Voices: A World Forum for Music Therapy 12(3). DeNora, T. 2000. Music in everyday life. Cambridge: Cambridge University Press.

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Maren Metell Eckerdal, P. and Merker, B. 2009. ‘Music’ and the ‘action song’ in infant development: An interpretation. In S. Malloch and C. Trevarthen (eds.), Communicative musicality. Exploring the basis of human companionship. New York: Oxford University Press, pp. 241–262. Freire, P. 1970. The pedagogy of the oppressed. London: Penguin. Funksjonshemmedes Felles Organisasjon. 2019. Mangel på informasjon er det største hinderet for deltakelse [The lack of information is the biggest barrier for participation]. [online] [Accessed on 20 April 2022] Available from: www.ffo.no/aktuelt2/2019/det-viktigste-er-a-delta/ Goodley, D. 2007a. Becoming rhizomatic parents: Deleuze, Guattari and disabled babies. Disability & Society 22(2), pp. 145–160. Goodley, D. 2007b. Towards socially just pedagogies: Deleuzoguattarian critical disability studies. International Journal of Inclusive Education 11(3), pp. 317–334. Goodley, D. and Runswick-Cole, K. 2010. Emancipating play: Dis/abled children, development and deconstruction. Disability & Society 25(4), pp. 499–512. Hadley, S. 2006. Feminist perspectives in music therapy. Dallas: Barcelona Publishers. Holzman, L. 2010. Without creating ZPDs there is no creativity. In C. Connery, V. JohnSteiner and A. Marjanovic-Shane (eds.), Vygotsky and creativity: A cultural-historical approach to play, meaning making, and the arts. New York: Peter Lang Publishers, pp. 28–39. International Play Association. 2013. Summary United nations general comment no. 17 on the right of the child to rest, leisure, play, recreational activities, cultural life and the arts (article 31). [online] [Accessed on 20 April 2022] Available from: http://develop.ipaworld.org/wpcontent/uploads/2013/11/IPA-Summary-of-UN-GC-article-31_FINAL1.pdf Jantzen, W. 1976. Zur begrifflichen Fassung von Behinderung aus der Sicht des historischen und dialektischen Materialismus [On the conceptual frame of disability from: a historical and materialistic point of view]. Zeitschrift für Heilpädagogik 27(7), pp. 428–436. Krüger, V. 2020. Music therapy in child welfare: bridging provision, protection, and participation. Dallas: Barcelona Publishers. Leza, J. 2020. Neuroqueering music therapy. In D. Milton (ed.), The neurodiversity reader. Middlesex: Pavilion Publishing and Media, pp. 210–225. Lubet A. 2009. The inclusion of music/the music of inclusion. International Journal of Inclusive Education 13(7), pp. 727–739. Lubet A. 2011. Disability rights, music and the case for inclusive education. International Journal of Inclusive Education 15(1), pp. 57–70. Mallett, R. and Runswick-Cole, K. 2014. Approaching disability: Critical issues and perspectives. London: Routledge. Malloch, S. and Trevarthen, C. eds. 2009. Communicative musicality. Exploring the basis of human companionship. New York: Oxford University Press MacDonald, Kreutz, G. and Mitchell, L. eds. 2012. Music, Health, and Wellbeing. Oxford: Oxford University Press. McLaughlin, J., Coleman-Fountain, E. and Clavering, E. 2016. Disabled childhoods: Monitoring differences and emerging edentities. London: Routledge. Metell, M. 2014. Dis/abling musicking: Reflections on a disability studies perspective in music therapy. Voices a World Forum Music Therapy 14(3). Metell, M. 2019. How we talk when we talk about disabled children and their families: An invitation to queer the discourse. Voices a World Forum for Music Therapy 19(3). Metell, M. and Larsson, M. 2018. Musikk fra livets begynnelse når livets begynnelse har vært tøft. Praksis- og brukererfaringer fra et tilrettelagt musikkprosjekt [Music at the beginning of life when beginning of life has been hard. Practice and user experiences from: a music project]. Polyfon konferansen. 22 September 2018, Bergen. Metell, M. and Stige, B. 2016. Blind spots in music therapy. Toward a critical notion of participation in context of children with visual impairment. Nordic Journal of Music Therapy 25(4), pp. 300–318. Nakata, T. and Trehub, S. E. 2004. Infants’ responsiveness to maternal speech and singing. Infant Behavior and Development 27(4), pp. 455–464.

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Disabled Children’s Access to Music Neurodiversity for Music Therapists. 2022. Neurodiversity for music therapists. [Facebook] [Accessed on 20 April 2022] Available from: www.facebook.com/NeurodiversityMusicTherapy/ Oliver, M. 1990. The Politics of Disablement. Basingstoke: Macmillan. Pavlicevic, M. and Ansdell, G. eds. 2004. Community music therapy. London: Jessica Kingsley. Pavlicevic, M. and Ansdell, G. 2009. Between communicative musicality and collaborative musicing: A perspective from community music therapy. In S. Malloch and C. Trevarthen (eds.), Communicative musicality. Exploring the basis of human companionship. New York: Oxford University Press, pp. 357–376. Pickard, P., Thompson, G., Metell, M., Roginsky, E. and Elefant, C. 2020. It’s not what’s done, but why it’s done. Voices: A World Forum for Music Therapy 20(3). Procter, S. 2013. Music therapy: What is it for whom? An ethnography of music therapy in a community mental health resource centre (Doctoral Thesis), Exeter, University of Exeter. Redd Barna. 2021. Fritid for alle—uten fordommer. Fortellingger om fritid fra barn og ungdom med funksjonsnedsettelse [Leisure time for everyone- without prejudices. Narratives on leisure time from children and youth with disability]. [Online] [Accessed on 20 April 2022] Available from: www.reddbarna.no/content/uploads/2021/06/ReddBarna_fritid_ for_alle_2021.pdf Rolvsjord, R. 2010. Resource-oriented music therapy in mental health care. Gilsum: Barcelona Publishers. Runswick-Cole, K. and Curran, T. 2014. Difficult discussions and curious conversations: Challenging the dominance of the medical model in global studies of childhood. In D. Goodley, K. Runswick-Cole and K. Liddiard (eds.), Interventions in disabled childhood studies. Sheffield: iHuman Press, pp. 87–91. [Accessed on 20 April 2022] Available from: www. sheffield.ac.uk/media/18576/download Runswick-Cole, K., Curran, T. and Liddiard, K. 2018. The palgrave handbook of disabled children’s childhood studies. 1st edition. London: Palgrave Macmillan. Ruud, E. 2013. Can music serve as a “cultural immunogen”? An explorative study. International Journal of Qualitative Studies on Health and Well-Being 8(1), p. 20597. Ruud E. 2020. Toward a sociology of music therapy: Musicking as a cultural immunogen. Dallas TX: Barcelona Publishers. Schillmeier, M. W. J. 2010. Rethinking disability: Bodies, senses, and things. New York: Routledge. Shaw, C. 2022. An autoethnographic journey in developing post-ableist music therapy. Voices: A World Forum for Music Therapy 22(1). Skogdal, E. 2015. Hvem får være musikkelev?—kunstdidaktisk eller terapeutisk ståsted [Who gets to be a music student? Art didactic or therapeutic standpoint]. Nordic Journal of Art & Research 4(2). Small, C. 1998. Musicking: The meanings of performing and listening. New Hampshire, USA: University Press of New England. Stern, D. N. 1985. The interpersonal world of the infant: A view from psychoanalysis and developmental psychology. New York: Basic books. Stige, B. 2002. Culture-centered music therapy. Gilsum: Barcelona Publishers. Stige, B. and Aarø, L. E. 2012. Invitation to community music therapy. New York: Routledge. Straus, J. 2011. Extraordinary measures: Disability in music. Oxford: Oxford University Press. Straus, J. 2014. Music therapy and autism: A view from disability studies. Voices: A World Forum for Music Therapy 14(3). Tøssebro, J. 2004. Introduction to the special issue: Understanding disability. Scandinavian Journal of Disability Research 6(1), pp. 3–7. Trevarthen, C. and Aitken, K. J. 2001. Infant intersubjectivity: Research, theory, and clinical applications. Journal of Child Psychology and Psychiatry 42(1), pp. 3–48. UN Committee on the Rights of the Child (CRC). 2013. General comment No. 17 (2013) on the right of the child to rest, leisure, play, recreational activities, cultural life and the arts. [online] [Accessed on 20 April 2022] Available from: www.refworld.org/ docid/51ef9bcc4.html

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Maren Metell United Nations. 1989. Convention on the Rights of the Child (CRC). [online] [Accessed on 20 April 2022] Available from: https://www.ohchr.org/en/instruments-mechanisms/ instruments/convention-rights-child Unge funksjonshemmede 2017. Barrierer i kultur og idrett [Barriers in culture and sports]. [online] [Accessed on 20 April 2022] Available from: https://ungefunksjonshemmede.no/ungefunksjonsjemmede-no/wp-content/uploads/2017/10/Barrierer-i-kultur-og-idrett.pdf UNICEF 2013. The state of the world’s children 2013. Children with disabilities: From exclusion to inclusion. [online] [Accessed on 20 April 2022] Available from: www.unicef.org/ media/84886/file/SOWC-2013.pdf Yum, Lau, W. K. W., Poon, K. and Ho, F. C. 2020. Music therapy as social skill intervention for children with comorbid ASD and ID: study protocol for a randomized controlled trial. BMC Pediatrics 20(1), pp. 545–545.

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Vignette Eight MEET EULETTA

Hello. My name is Euletta, and this is my story. I am very happy to be in this book so you can learn about me. I am 13 years old, and I have a very big family. I love my family. Most of my brothers and sisters are older than me, but I have two younger brothers. I would like to be one of the older ones. Sometimes they are bossy, but they look after me too. They always take good care of me. I want to grow up and be older so I can buy sweeties and go to the church all by myself. Jesus is the most important person to me. Sometimes I go to Mass with my mum, just the two of us, and I love it. My brothers and sisters do help with the house chores, and I help sometimes too. I love playing with them, especially with Bosco. We call him ‘the little one’, but he is actually the biggest. I am happy at school. My teacher’s name is Gloria. She is very good to me. I have many friends: Jimena, Ariana, Nicolás, Leire, Carolina. I enjoy playing with them. My favourite game is ‘La zapatilla por detrás’. My best friend is Nicolás. I love going to school. Although I like going to school, I don’t like wearing the facemask all day long. The teachers are sometimes a pain; they are always telling us to wear a facemask, even at the playground! We can only take them off at the dining room. How am I supposed to eat if I keep the facemask? Haha! Babies are very lucky because they don’t need to wear facemasks. I like babies. I love going to my friends’ houses and spending time with them. And I love watching Frozen—it is my favourite film. When I grow up, I want to be an artist. I really enjoy art class at school. I love drawing; this is my favourite thing! But I don’t enjoy reading very much. It’s only okay. When I am at home, I spend a lot of time drawing and colouring. I wouldn’t change anything from my school or my family. I love my family, my parents, and all of them. But if I could change anything in the world, I would remove DOI: 10.4324/9781003056737-44

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facemasks—I would make them disappear! And Covid, PCR tests, vaccines. I don’t like them at all! No more facemasks! I would like to tell the people who read my story that Jesus is the most important one to me and that I love going to Mass, eating sweeties, and drawing. Euletta is 13 years old and has learning disabilities. She lives in Spain. Co-author: Begoña Rodriguez (Universidad Francisco de Vitoria).

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33 THE RIGHT TO GROW TOGETHER Exploring the Roles of Community Agents in Providing Support for Early Adolescents with Disabilities to make Friends and join Groups Gemma Diaz-Garolera, Maria Pallisera Díaz, and Judit Fullana Noell Introduction The ratifying countries of the Convention on the Rights of Persons with Disabilities (2006) (CRPD) must guarantee that all people with disabilities receive the support they need for their social inclusion, taking into account areas such as education, accessibility, and independent living. The Convention on the Rights of the Child (1989) establishes that states parties must ensure children with disabilities can actively participate in their community (Art. 23.1) and that they have access to recreational and leisure opportunities to facilitate their social integration and individual development (Art. 23.2 and Art. 31). Guaranteeing such rights is crucial in allowing young adolescents with disabilities to build social networks that allow them to develop friendships and join groups. However, international studies suggest that adolescents with disabilities face great difficulties in establishing and maintaining social relationships in school contexts and that, moreover, they are often the targets of bullying (Latimier and Šiška 2011; Martínez-Cao et al. 2021; Vlachou and Papananou 2014; Wright 2021). This chapter focuses on the experiences of those early adolescents with disabilities transitioning from primary to secondary schools. Adolescence is a key period in the establishment of personal relationships and friendships (Strnadová and Cumming 2016). Although not the only environment where these relationships are built, the educational setting is the context in which adolescents share many learning and recreational experiences. It is therefore the space in which many adolescents establish and strengthen their social network. The DOI: 10.4324/9781003056737-45

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transitions that occur between educational settings have a different impact on how this network is established. Specifically, the transition from primary to secondary school, which occurs around the age of 11 and focuses on formal school experiences, generates—like all changes—uncertainty, loss, challenges, but also opportunities. Friendships have a particular weight during this stage, and one of the main concerns of students transitioning into secondary school is to make new friends (Chambers and Coffey 2019). This constitutes a challenge for early adolescents and an element that contributes significantly to personal well-being and developing a sense of belonging in the new school. However, studies such as the ones by Chambers and Coffey (2019) and DiazGarolera et al. (2020) suggest that early adolescents with intellectual disabilities often lose friends in the transition from primary to secondary education. Generally speaking, young people with individual educational needs are more likely to experience a negative transition to secondary school. However, the experience is even more severe for students with intellectual disabilities, who are three times more likely to have a poor transition compared to young people without individual educational needs (McCoy, Shevlin and Rose 2020). This educational stage is characterised by organisational and curricular discrepancies, an increase in academic demands, and the recomposition of student groups, elements that constitute a source of concern and insecurity for students and their families. All these justifies a thorough exploration of this transition, which has been the object of far less research than the transition processes from post-primary to tertiary education. This chapter examines the current state of support received by early adolescents with disabilities when building social networks in the transition process from primary to secondary school, a crucial period in their development. From a community perspective, this chapter provides a detailed analysis of the role played by the different agents involved (family, educational centres, and community) and their interaction, with the aim of guaranteeing the rights of early adolescents with disabilities to develop friendships and join groups, especially in inclusive contexts. The voices of adolescents need to be taken into account in research on their transition, since they are central to understanding the barriers to, and facilitators of, positive transitions from primary to post-primary education and minimising potential marginalisation (Scanlon 2019). Research that includes the voices of people with disabilities is prioritised in our analysis of the existing literature.

Growing Together: Challenges and Opportunities When Making Friends and Joining Groups in the Transition From Primary to Secondary Education The transition from primary to secondary education usually takes place between the ages of 11 and 12 and very often involves a change of school. It is fundamentally conditioned by the formal education experiences that adolescents undergo during this stage. Although some students transition to the new school accompanied by some of their classmates, others do so alone. Friendships formed during the primary school 600

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stage can therefore be broken during this process (Chambers and Coffey 2019). Even if secondary education continues at the same school, the curricular and organisational characteristics of this stage create new challenges for students and their families: secondary schools are often larger than primary schools, more teachers are involved in each year, the curriculum is more complex and demanding, and they tend to be more impersonal and competitive (Cohen and Smerdon 2009). Differences in age and physical development between adolescents entering secondary school and those completing it mean that the school’s leisure spaces (canteen, playground) are informally organised in a way that students must learn to negotiate, with the incorporation of new routines adding further complexity. Strnadová and Cumming (2016) conducted a study in the English-speaking context and found that students with disabilities take longer to learn and adapt to secondary school routines than their typically developing peers do, while also highlighting that social expectations increase and relationships with peers become more complex in secondary school. In addition, these relationships end up taking on greater importance than family relations. This cluster of factors leads to the transition from primary to secondary education being defined as a complex and multidimensional phenomenon (Pendergast, Bahr and Main 2017). Studies on parents’ perspectives reveal their main concerns regarding the transition from primary to secondary education to be related to whether their children will make new friends, build new relationships with their new teachers and peers, and be subjected to bullying, as well as whether the support offered by professionals will continue at secondary school (Barnes-Holmes 2019). This study shows that parents place more value on the social inclusion of their children in secondary school than on academic achievement. Indeed, the changes of school and reference groups and the system used to group students at school affect how friendships are constructed. Making new friends poses a challenge for every child and early adolescent as they transition to post-primary school and constitutes a necessary element in developing a sense of belonging to the new school. The social network is a potential future informal support network that may be necessary in achieving an independent life. Young people with disabilities often lose friends when they start secondary school. Some authors attribute this to the progressive decrease in the presence of students with intellectual disabilities in the regular classroom as they progress through secondary education (Webster and Blatchford 2013; Wendelborg and Tossebro 2010). Others relate it to a lack of opportunities to participate in community free-time activities (Callus and Farrugia 2016). These situations limit the possibilities for adolescents to develop relationships and friendships in both school and free-time settings beyond the family circle. Paradoxically, although interpersonal relationships and, specifically, friendships are one of the main concerns of adolescents and their families during transition processes, this area has received little attention in research (Marshall et al. 2019) or from educational practices in support of transition (Norwich 2020). Likewise, very little research has addressed the issue of interpersonal relationships and friendships from 601

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the perspective of transition processes. There is, therefore, a need for more in-depth analysis of the role played by schools and professionals in these processes in order to determine strategies that families and students, with and without disabilities, and the community in general might implement to promote the establishment and strengthening of young people’s social networks.

The Transition From Primary to Secondary School from the Perspective of Adolescents With Disabilities It is important to listen to the views of those affected if we are to understand the main problems and difficulties they experience in their transition process and what support they perceive in fostering the establishment of a satisfactory network of relationships. As Mortier et al. (2011) pointed out, listening to children with disabilities allows us to see how, in some cases, the typical forms of support that are introduced into their lives can have negative consequences and disabling effects that they are unable to cope with due to the position they are in. It has also been found that young people want to have a say in decisions affecting their own lives (Pallisera et al. 2016; Rome et al. 2015). Research that recognises and values ​​people’s individual experiences contributes decisively to social change and the improvement of their living conditions (Susinos and Parrilla 2008). Therefore, it is important to create spaces in which socially excluded groups can explore and name what is important to them (Fielding 2011). In addition, specifically in the field of education, it is essential that students participate in all decisions that affect them in order to progress towards inclusive education (Ceballos et al. 2016). Over the last two decades, some studies have been conducted on interrelationships (Cooney 2002; Foley et al. 2012; King et al. 2013; Pallisera et al. 2016; Scanlon 2019; Tarleton and Ward 2005) and friendships in the transition from primary to secondary education that take into account the voices and perspectives of adolescents with disabilities and individual educational needs (Asbjørnslett et al. 2012; Gough Kenyon et al. 2020; Vlachou and Papananou 2014). These perspectives enrich both the research process and the results obtained, while also increasing the chances of improvements being made to their living conditions (Johnson et al. 2014; O’Brien et al. 2014). Studies on the perspectives of adolescents have shown that their main concerns are related to whether or not they fit into the new social structure, missing friends who have not gone to the same secondary school (Scanlon 2019), and the fear of not having enough friends (Letrello and Miles 2003). Marshall et al. (2019) found that adolescents about to start secondary school understood peer relations as a significant part of their daily school life that affected their emotional well-being. Gough Kenyon et al. (2020) found that the concerns of adolescents with developmental language difficulties were more related to academic outcomes in their transition to secondary education than to social concerns. Some people with intellectual disabilities express having negative memories of their time in secondary education (Pallisera et al. 2016), and other studies have reported that young people with disabilities usually encounter 602

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difficulties finding and maintaining friendships during their transition to adolescence (Matheson, Olsen, and Weisner 2007). Greek students with physical, hearing, or visual disabilities, who have talked about their high school experiences, mention having experienced some form of victimisation and diverse forms of bullying (Vlachou and Papananou 2014). Research carried out by Asbjørnslett et al. (2012, p. 492) showed that although adolescents with physical disabilities usually engage in adapting to different but mutual friendships, they sometimes feel it is easier to do things with friends who have disabilities, because they ‘can make you feel more at home’. Petry (2018) found that, in secondary education, students on the autism spectrum and with physical and sensory disabilities had lower peer acceptance, more difficulties in making friends, and fewer peer interactions than their typically developing peers. Studies carried out on adolescents with autism transitioning from primary to secondary education in England (Makin, Hill, and Pellicano 2017) and France (Richter et al. 2019) found that the children reported experiencing social difficulties. Additionally, Makin et al. (2017) found that during primary education, these children experienced challenges with their peers such as bullying and exclusion and that this continued into secondary education, when they felt a loss of familiarity in their relationships. Richter et al. (2019) also reported that bullying remained a particular risk for students with autism, even if in their research students felt well accepted, and their parents shared this impression. At the same time, other studies have shown that adolescents value the opportunities to meet new people, establish new relationships, and interact with other pupils in post-primary school, which facilitate feelings of safety and security, leading them to evaluate the experience positively (Scanlon 2019; Pitt et al. 2019). Letrello and Miles (2003) found that adolescents with intellectual disability considered making friends to be one of the easiest aspects of moving to secondary school and that peer interactions were an important aspect perceived by students at the beginning of secondary education. After conducting a literature review, Hughes et al. (2013) reported that adolescents with individual educational needs (including learning/intellectual disabilities, specific learning difficulties, pervasive development disorders, and attention deficit disorders) seemed generally happy with their transition experience and new friendships, although they did suggest that, in order to understand this perception, it is necessary to explore children’s subjective experiences in greater depth. Jamieson et al. (2009) analysed the nature of the friendships of adolescents with physical disability from the points of view of two girls and a boy attending inclusive high school and concluded that such schools encourage students with and without disabilities to share interests and develop reciprocal relationships in school. In another study involving students with intellectual disabilities in a transition programme from primary to secondary education, Pitt et al. (2019) found the programme helpful in making adolescents feel more comfortable with their new secondary schools, which highlights the importance of providing support to facilitate this process and relationship building as a critical factor in transition. 603

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Adolescents With Intellectual Disabilities Transitioning From Primary to Secondary Education: Insights From the Research Although the transition from primary to secondary school poses a challenge for many students, research shows that it is particularly challenging for students with intellectual disabilities (McCoy et al. 2020). Not only do the academic demands increase, but adolescents with intellectual disabilities also often lose friends during this transition (Chambers and Coffey 2019; Diaz-Garolera et al. 2020). What is more, they can sometimes suffer peer rejection, which can lead to isolation, as well as a lack of relationship opportunities. The perceptions of young people with intellectual disabilities gleaned from these studies with regard to the stage of secondary education highlight some of the main factors influencing their educational inclusion: relationships with peers and developing friendship relationships; the type of attention received from teachers; the academic challenges of secondary education and the opportunity to address them; and opportunities for learning, free time, and relationships with peers without disabilities. Woodgate et al. (2019) conducted a review of research analysing the social inclusion of children with disabilities, including those with intellectual disabilities, from the points of view of the children themselves and their typically developing peers. They found that children with disabilities perceive relationships with peers as being important when it comes to feeling included and having a sense of belonging. However, feelings of exclusion and loneliness frequently appear when these relationships do not exist or are difficult. Some studies in which children with disabilities claim to have friends have found that many had fewer than their typically developing peers (Avramidis 2013; Mortier et al. 2011). Although friendships can be an important source of instrumental and emotional support, children with intellectual disabilities report challenges related to maintaining peer interactions and friendships and managing or dealing with conflict with peers (Woodgate et al. 2019). Furthermore, analysing the transition from primary to secondary school, Pitt et al. (2019) observed bullying to be one of the main difficulties perceived by children with intellectual disabilities, representing a real barrier to success in this transition. Adolescents with intellectual disabilities are vulnerable to bullying (Mishna 2003) and are victimised more often than their typically developing peers (Rose, Monda-Amaya, and Espelage 2010). Christensen et al. (2012) compared the bullying suffered by 46 adolescents with intellectual disabilities and 91 adolescents with typical cognitive development and determined that the former were significantly more likely to report being bullied. Given all these, the issue of bullying is clearly present in the lives of adolescents with disabilities, hence the need to work to improve their relationship experiences with their peers. Attention from teachers is perceived as desirable by adolescents with disabilities when associated with eliminating restrictions, promoting their participation in activities, and facilitating social interactions (De Schauwer et al. 2009; Woodgate et al. 2019). However, such attention is identified as a barrier to inclusion when it is perceived as stigmatising, an additional form of control, or a way of increasing 604

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the feeling of dependency or inadequacy (De Schauwer et al. 2009; O’Rourke and Houghton 2008). As far as academic challenges are concerned, Woodgate et al. (2019) pointed out that academic performance is associated with a sense of value and acceptance in the school context. Adolescents with disabilities often feel different and are aware that they have to work very hard to be valued by their peers (De Schauwer et al. 2009; MacArthur et al. 2007; Mortier et al. 2011; Pitt et al. 2019). The most frequent activity that adolescents with disabilities carry out after school is usually related to receiving support for school assignments or homework, and they therefore encounter difficulties in having a social life outside the home, as well as limited opportunities to interact with their peers in typical childhood activities such as birthday celebrations (Woodgate et al. 2019). In short, a considerable amount of research has analysed how adolescents with disabilities perceive inclusion in school and in the community. Although some report positive experiences, others identify barriers to their social and academic inclusion. Support from schools and teachers is not always welcome, especially when it is experienced as limiting participation and as a form of stigmatisation that makes the relationship with typically developing peers even more difficult. This is particularly true of secondary education, where relationships with peers constitute a central aspect in adolescents’ construction of their identity. As Mortier et al. (2011) stated, it is necessary to both offer support to children and adolescents in school based on a dialogue between the student and the people involved in providing them with support and to conceive students with disabilities as agents in developing their own support rather than just receivers. Recently, our research group conducted several studies in which young people and adults with intellectual disabilities described and reflected on their school experiences. Following are the main results of two investigations carried out by the authors of this chapter, as well as quotes from the participants. One such study had 8 participants aged 17 to 23 (5 female and 3 male) and 11 adults aged 19 to 45 (7 female and 4 male) (Pallisera et al. 2016), and another, which focused on constructing friendships, involved 11 people with intellectual disabilities (3 female and 8 male) aged 17 to 19 (Diaz-Garolera, Pallisera and Fullana 2019). Both research projects employed qualitative methods to collect information on different aspects related to the participants’ educational pathways, including the transition from primary to secondary school and their experiences in terms of social participation and social relations and the barriers and supports encountered during this stage. The methods used to conduct these studies included in-depth semi-structured interviews and focus groups. For the interviews, the recommendations by Hollomotz (2017) and Høybråten-Sigstad and Garrels (2018) were followed, paying special attention to facilitating the comprehension of the questions using a simple vocabulary, helping with expression but leaving enough time for the person to be able to express themselves freely, rephrasing and summarising responses to verify that they had understood what the person wanted to explain, and trying to provide specific frames of reference in which to place the questions. In this respect, 605

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the use of visual methods, such as drawing and the photovoice method (De Lange, Mitchell and Stuart 2007; Mitchell 2011), was very useful in helping participants evoke their experiences. Thus, in the study developed here, the participants drew a ‘river of life’, within which they placed aspects perceived as positive or negative along their educational pathway, which included their transition process from primary to secondary school. In this same study, participants took photographs of objects, situations, or people that related to the barriers or supports received. Then, through the photovoice method, a group discussion was held that allowed participants to express the difficulties and supports experienced during the transition process in greater detail. In the study on constructing friendships, individual interviews were conducted with the support of a table in which participants placed their friendships throughout different stages of their lives—primary school, secondary school, transition to adulthood—and this was then used as a prompt to facilitate the interview. These 30 interviews, analysed together, provide a sample of the vision that young people with intellectual disabilities have of their school experiences. This analysis showed that their relationship with peers is one of the elements that come into play in their assessment of their pathway through secondary education. In fact, the issue of relationships with peers, friendships, and the difficulties of maintaining them already appears when talking about the transition from primary to secondary education. Of the 11 young people who participated in the study on friendships, 9 mentioned losing friends during this stage and highlighted this change of schools as a stage in which they lost relationships: ‘There were some [friends] who went to another school . . .’; ‘I didn’t see those [referring to primary school friends] anymore’, ‘No, I didn’t have any more contact with them [referring to primary school classmates]’. Even so, although these young people were aware that the change of school entailed the loss of contact with old classmates and friends, they also positively valued the fact that the new secondary school offered new expectations and opportunities to make new friends over time: ‘[W]hen I went to [primary] school I didn’t have many friends. And when I started secondary school, I started making more friends and that’, ‘I met more people there [in secondary school]’, ‘When they [secondary school friends] got to know me, they treated me well’. Although some of the participants had a positive view of their time at secondary school, highlighting the support received from teachers and good relationships with peers, this was not the majority view. Many suffered from peer rejection: I didn’t like the relationships very much because people were very conflictive, both inside and outside class, and I had a bad time . . . Maybe because I was the weakest or, I don’t know, they said things to me and I couldn’t hear the teacher. And when I walked down the corridors people would call me names. In secondary school, it is common to increase support for learning (for example, adaptation of materials and/or exams) and incorporate these within ‘special needs’ classrooms in the regular school. The young people surveyed often related the 606

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rejection they experienced from their peers to the fact that they received specific attention from teachers: What happens is that those of us who went to these classes [special needs classes], the others who went to the normal class treated us like we were stupid when the teachers couldn’t hear them. Therefore, they sometimes rejected this specific treatment. This is the case, for example, of one of the young women who participated, who rejected the possibility of taking adapted exams, with the consequent extra effort she had to make to pass them: ‘I said “no” [referring to the possibility of taking adapted exams], because I was afraid that my classmates would laugh at me.’ Loneliness, feeling different, and having to struggle a lot to overcome academic challenges are themes that appear in their narratives. This all becomes more evident at secondary school due to the increase in academic requirements, the strategies used to respond to individual needs, and the growing rejection by peers, the awareness of ‘being different’, a situation that sometimes leads to the young person’s isolation and a consequent lack of relationship opportunities: Because in secondary school, at playtime, I never went out to play, because I always had homework to do, because when the teachers said: ‘Now write your homework in your notebook for tomorrow’, what did I do? I wrote it all down . . . every task, one by one and . . . I didn’t get to go out into the playground. Do you know what I did? I went to an ‘extra support class’ and stayed there, instead of playing with the others I kept studying. Some of the participants were aware that they had not enjoyed the same learning, free time, and relationship opportunities as their non-disabled peers. This is the case of one of the participants, who explained that he had been denied the right to go on the end-of-year trip with his classmates: Interviewee: Yes, I did my third year of ESO [compulsory secondary education] because one of the physical education teachers denied me a right. Interviewer:  They did what? Interviewee:  Denied a right. Yes. Interviewer:  What right were you denied? Interviewee:  The right to travel to Italy; they didn’t let me. Interviewer:  You weren’t allowed to travel to Italy. Interviewee: No, they didn’t let me because they didn’t think I was capable of travelling . . . of travelling on my own, that I would wander off when everyone got off the bus . . . so what did they do? Well, they went and I stayed at home. Many of the students interviewed faced challenges when transitioning from primary to secondary school, including peer rejection, which increased their feelings of 607

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loneliness. The loss of friends was also regularly mentioned. Our results suggest that the participants were aware of the few relationship opportunities they had in comparison with their non-disabled peers.

Promoting Opportunities to Foster Relationships: Actions by Schools and the Community During the Transition From Primary to Secondary School Although transition processes are multidimensional and their analysis cannot therefore be limited to a single environment, the literature previously discussed shows that the educational scenario has a key role to play in the process of transition from primary to secondary. Scanlon et al. (2019) pointed out the need for schools to lead collaboration and coordination between the different agents involved in the transition process, promoting a partnership approach that includes, in addition to schools, young people and their families and the representatives of other community scenarios in which the student develops: formative, cultural, free-time spaces, etc. Preparing students for the transition from an inclusive perspective goes beyond educational settings and must take into account the connection with spaces in the local environment that can offer students support throughout their journey. Establishing connections with the community and networking with community resource professionals adds new roles to education professionals responsible for the transition process. However, it should not be forgotten that adolescents do not constantly need adults to develop friendships but rather can use their own resources and abilities to this end. Furthermore, such interaction with others also depends on the immediate environment and context. While bearing in mind the need not to disempower adolescents, given that they must play an active role, in the following we outline two of the main functions that professionals can perform at different times in the process. Planning the transition from a collaborative perspective, including parents or carers, both primary and secondary school professionals, and the young person with a disability is essential in fostering the young person’s incorporation into secondary school life. Teachers need to listen to and understand the young person’s and their parents’ concerns before the transition takes place. Every young person is different, so it is important to consider designing personalised support for each of them, where appropriate (Shevlin 2019). It is also important to acknowledge the different nature of the challenges that adolescents may face in their transition process, whether these be academic or social, or difficulties moving around the school and using different services, such as the cafeteria and other spaces. When it comes to social issues, it is important to bear in mind that making new friends poses a challenge for all adolescents when moving to secondary school and is a necessary element in the sense of belonging to the new school (Coffey 2013). Chambers and Coffey (2019) highlighted the positive impact of certain actions aimed at easing the transition processes that may be organised by the secondary school with the participation of primary schools. In some contexts, these actions are called induction programmes and are implemented prior to joining or during the first days or weeks of secondary school. 608

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The value of these programmes lies in their universal nature, that is, they are aimed at all students who are to be enrolled in secondary school, so they do not have a specific nature, despite including personalised actions. These authors discussed how the principles of universal design learning (Center for Applied Special Technology 2011) can guide the organisation of induction programmes to promote the transition for all children by adding the value of personalisation, concretely addressing the needs experienced by young people with disabilities. These authors indicated also the need for school actions to take the following factors into account: multiple means of representation (i.e. presenting information in different ways, including photographs, videos, incorporating older students who explain the rules to the younger ones, etc.); multiple means of action and expression (motor, oral, and anticipatory communication support); and multiple means of engagement (individual and collaborative activities). Since making friends is one of the main concerns expressed by students, during transition they should have multiple opportunities to form relationships with new classmates. In this respect, these authors point out the role that peer support leaders—who must be carefully selected and receive appropriate training—can play in these induction days as an informal point of contact. The aim of actions implemented by the school and its professionals should be to foster friendships in the secondary stage of schooling. It is difficult to find research that studies the role certain forms of support (strategies, methodologies, programmes) provide in enhancing the interpersonal relationships of young people with disabilities in their transition process from primary to secondary school. The issue of social relations has not been considered to be a priority in research, and neither has this transition period, as already mentioned. In addition, research on the impact of educational interventions in this area is complex due to the difficulties of isolating the influence of other variables on the impact of the intervention and the need for a long period of time to assess possible long-term influences of the intervention (Diaz-Garolera et al. 2019; Laugeson et al. 2015), among other factors. However, a review of the literature on actions that have been shown to have a positive impact on the social dimension of young people with intellectual disabilities allows us to identify some relevant practices. These include the Circle of Friends and social mentoring programmes. The Circle of Friends programmes have been widely developed in the United States, Canada, and other English-speaking countries (Circle of Friends 2016; Hassani et al. 2021). These are school-based programmes, promoted by a professional at the school, and consist of matching students with disabilities with buddies (referring to a general education student in a peer network) to provide opportunities for social inclusion. Buddies have the function of expanding the social circle of children and adolescents with disabilities within a process in which the latter are considered to gain self-esteem and form more relationships, while the former acquire self-confidence and learn to accept and value diversity (Calabrese et al. 2008). Circle of Friends has the value of contributing to changing the social perceptions of peers without disabilities by creating relationships and opportunities for interaction in a process that begins with a small circle that potentially becomes larger over time. A study by Calabrese et al. (2008) collected the opinions of professionals, buddies, and families from six 609

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schools that implemented the Circles of Friends programme. They valued the experience very positively, not only as a model that promoted the inclusion of young people with disabilities inside and outside the classroom, but also as a strategy that helps build a culture of acceptance by encouraging relationships between students with disabilities and their non-disabled peers. In some ways, the Circle of Friends programme could be considered to develop— and amplify—strategies based on what is known as social mentoring (Prieto and Feu 2018). Social mentoring includes developing programmes and actions based on dynamic, reciprocal, formal, and informal relationships, focusing on personal or professional development. The mentor provides perspectives and resources, and in an ideal mentoring relationship, both mentors and mentees learn and teach one another (Brown, Takahashi and Roberts 2010). Prieto and Feu (2018) focused on the social dimension of mentoring, noting that its aim is to influence the social inclusion of people at risk of social exclusion. They added that the minimum time that social mentoring programmes require in order to leave a mark is six months. Regardless of the approach or type of programme employed to provide support for young people with and without disabilities, Chambers and Coffey (2019) stressed the important role that teachers play in creating a safe and supportive learning environment to assist students in fostering new relationships through peer support programmes in which older students help younger ones adjust to secondary school. Scanlon et al. (2019) also highlighted mentoring as a valuable strategy that helps young people feel part of the new school. A systematic review of the literature on how peers promote the social inclusion of children with disabilities, conducted by Woodgate et al. (2019) and based on the experiences of young people with and without disabilities, highlighted relevant elements that can be used to guide actions based on peer support: the important role played by school professionals in facilitating friendships (directly or indirectly initiating social interactions and activating and guiding peer relationships, for example); creating opportunities for participation, in both academic and recreational or informal settings; having peers who offer different types of support (instrumental, like helping with homework, but also emotional, such as giving advice on relationships). Value was also awarded to the fact of others having information about what it means to have a disability. Beyond school, actions are required that foster social inclusion by promoting accessibility for early adolescents with disabilities and therefore their full participation in the community space. Having varied and appropriate opportunities to relate to the community fosters both personal fulfilment and the strengthening of the relationship network. In this respect, both the school and the immediate community play a relevant role in offering extracurricular activities that help reinforce both the sense of belonging and the establishment of relationships that can become supportive (Coffey 2013). Complicity and collaboration by families is essential in materialising a variety of opportunities that contribute to the social and relational enrichment of early adolescents. This would include, for example, facilitating social contact (inviting peers home, for example), offering advice on how to interact with others, arranging play dates, and facilitating access to structured activities (Woodgate et al. 2019). Local authorities also play a crucial role in promoting inclusion and, therefore, fostering 610

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social relations. There is a need for local government to commit to the creation and maintenance of fully accessible public spaces that encourage play and interaction by adolescents and their families as well as encouraging municipal leisure and free-time initiatives for which adolescents with disabilities receive the appropriate support to be able to actively participate in and, therefore, not find themselves excluded. Finally, it must be borne in mind that emphasis on the role of the school and its professionals must not negate the central role played by the voices of young people in their transition process and, in particular, in expressing the needs they experience in their relational dimension. When given the opportunity, young people themselves wish to take a leading role in this process (Rome et al. 2015). Therefore, adults must be aware of the importance of not being overly interventionist or acting on behalf of the adolescents. Families and schools must ensure that young people have the spaces and resources necessary to assess how they feel at school, what their needs are, and what their opinion is about what helps or prevents them from developing at all levels—including the relational—in school. Consequently, they should act as supporters to help young people achieve the connections and social interactions they desire.

Conclusion In summary, guaranteeing the right of disabled children and adolescents to grow up together with peers with and without disabilities is a task that must be shared between different agents. Primary and secondary schools must be proactive in promoting dynamics and practices that foster the development of peer relationships and offer support, especially in times of transition. Families must become aware of the importance of building peer relationships and friendships for children’s futures, accompanying children and adolescents with disabilities in developing skills and stimulating their participation in leisure activities. And community agents and services must offer inclusive spaces for participation where children and adolescents find the opportunities to interact and grow together outside the school setting. Children and young people must be at the centre of all educational and social actions, which must listen to their voice, their concerns, their interests, and their difficulties, in order to develop support actions tailored to their wishes and their needs.

Circle of Friends Circle of Friends is a social and language skills programme that supports students with special needs. It can be considered a social inclusion programme addressed to establish friendships between students with disabilities and their non-disabled peers, fostering an inclusive culture that welcomes and promotes values for all the students. It is based on the recognition that peers can play an important role in the individual’s behavioural change, and that the peer’s behaviour and attitude towards children experiencing social difficulties can change.

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The main components of this programme are the following:

• • •

Advisors, who are general and special teachers (including specialists) Peers, who are selected by the Advisors, and they are mates of students who are socially isolated Meaningful activities, which help peers to learn about their new friends and identify common interests The expected impact of the programme is that:

• • • •

Educators develop positive relationships and foster good expectations for all the students Students with disabilities increase social communication and good relationships, and foster friendships Peers increase their awareness, understanding, and acceptance of differences Parents increase their awareness of the importance of their children’s relationships

The main limitation of the programme is that there are few studies that evaluate experiences of the Circle of Friends approach, although the model seems to be a potential tool to improve good relationships in a broader.

Funding This work was supported by the Spanish Ministry of Economy and Competitiveness (MINECO) [grant number EDU2017–84989-R].

References Asbjørnslett, M., Engelsrud, G. H. and Helseth, S. 2012. ‘Friendship in all directions’: Norwegian children with physical disabilities experiencing friendship. Childhood 19(4), pp. 481–494. Avramidis, E. 2013. Self-concept, social position and social participation of pupils with SEN in mainstream primary schools. Research Papers in Education 28(4), pp. 421–442. Barnes-Holmes, Y. 2019. The role and impact of parents during transition from primary to post-primary school. In G. Scanlon, Y. Barnes-Holmes, M. Shevlin and C. McGuckin (eds.), Transition for pupils with special educational needs: Implications for inclusion policy and practice. Oxford: Peter Lang, pp. 51–76. Brown, S. E., Takahashi, K. T. and Roberts, K. D. 2010. Mentoring individuals with disabilities in postsecondary education: A review of the literature. Journal of Postsecondary Education & Disability 23(2), pp. 98–111. Calabrese, R., Patterson, J., Liu, F., Goodvin, S., Hummel, C. and Nance, E. 2008. An appreciative inquiry into the circle of friends program: the benefits of social inclusion of students with disabilities. International Journal of Whole Schooling 4(2), pp. 20–48. Callus, A. M. and Farrugia, R. 2016. The disabled child’s participation rights. London: Routledge.

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The Right to Grow Together Ceballos, N., Susinos, T. and Saiz, A. 2016. How can we improve through pupil participation? An infants school experience. Journal of Research in Special Educational Needs 16, pp. 583–586. Center for Applied Special Technology. 2011. [online] [Accessed on March 2022] Available from: www.cast.org/ Chambers, D. and Coffey, A. 2019. Guidelines for designing middle-school transition using universal design for learning principles. Improving Schools 22(1), pp. 29–42. Christensen, L. L., Fraynt, R. J., Neece, C. L. and Baker, B. L. 2012. Bullying adolescents with intellectual disability. Journal of Mental Health Research in Intellectual Disabilities 5(1), pp. 49–65. Circle of Friends. 2016. [online] [Accessed on March 2022] Available from: www.circleofriends.org/program-description Coffey, A. 2013. Relationships: The key to successful transition from primary to secondary school? Improving Schools 16(3), pp. 261–271. Cohen, J. S. and Smerdon, B. A. 2009. Tightening the dropout tourniquet: Easing the transition from middle to high school. Preventing School Failure: Alternative Education for Children and Youth 53(3), pp. 177–184. Convention on the Rights of Persons with Disabilities and Optional Protocol. 2006. [online] [Accessed on March 2022] Available from: www.un.org/disabilities/documents/convention/convoptprot-e.pdf. Convention on the Rights of the Child. 1989. [online] [Accessed on March 2022] Available from: www.ohchr.org/en/professionalinterest/pages/crc.aspx Cooney, B. F. 2002. Exploring perspectives on transition of youth with disabilities: Voices of young adults, parents, and professionals. Mental Retardation 40(6), pp. 425–435. De Lange, N., Mitchell, C. and Stuart, J. 2007. Putting people in the picture. Visual methodologies for social change. Rotterdam: Sense Publishers. De Schauwer, E., Van Hove, G., Mortier, K. and Loots, G. 2009. ‘I need help on mondays, it’s not my day. The other days, I’m ok’. Perspectives of disabled children on inclusive education. Children and Society 23(2), pp. 99–111. Diaz-Garolera, G., Pallisera, M. and Fullana, J. 2019. Developing social skills to empower friendships: design and assessment of a social skills training programme. International Journal of Inclusive Education, pp. 1–15. Diaz-Garolera, G., Pallisera, M. and Fullana, J. 2020. Friendship barriers and supports: Thoughts of young people with intellectual disabilities. Journal of Youth Studies, pp. 1–19. Fielding, M. 2011. La voz del alumnado y la inclusión educativa: Una aproximación democrática radical para el aprendizaje intergeneracional [Student voice and inclusive education: a radical democratic approach to intergenerational learning]. Revista Interuniversitaria de Formación del Profesorado 1, pp. 31–61. Foley, K., Blackmore, A., Girdler, S., O’Donnell, M., Glauert, R., Llewellyn, G. and Leonard, H. 2012. To feel belonged: the voices of children and youth with disabilities on the meaning of well-being. Child Indicators Research 5(2), pp. 375–391. Gough Kenyon, S. M., Lucas, R. M. and Palikara, O. 2020. Expectations of the transition to secondary school in children with developmental language disorder and low language ability. British Journal of Educational Psychology 90(2), pp. 249–265. Hassani, S., Alves, S., Avramidis, E. and Schwab, S. 2021. The Circle of Friends intervention: A research synthesis. European Journal of Special Needs Education, pp. 1–19. Hollomotz, A. 2017. Successful interviews with people with intellectual disability. Qualitative Research, pp. 1–18. Høybråten-Sigstad, H. M. and Garrels, V. 2018. Facilitating qualitative research interviews for respondents with intellectual disability. European Journal of Special Needs Education 33(5), pp. 692–706. Hughes, L. A., Banks, P. and Terras, M. M. 2013. Secondary school transition for children with special educational needs: A literature review. Support for Learning 28(1), pp. 24–34.

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Gemma Diaz-Garolera et al. Jamieson, M., Hutchinson, N. L., Taylor, J., Westlake, K. P., Berg, D. and Boyce, W. 2009. Friendships of adolescents with physical disabilities attending inclusive high schools. Canadian Journal of Occupational Therapy 76(5), pp. 368–376. Johnson, K., Minogue, G. and Hopklins, R. 2014. Inclusive research: Making a difference to policy and legislation. Journal of Applied Research in Intellectual Disabilities 27(1), pp. 76–84. King, M., Shields, N., Imms, C., Black, M. and Arden, C. 2013. Participation of children with intellectual disability compared with typically developing children. Research in Developmental Disabilities 34(5), pp. 1854–1862. Latimier C. and Šiška J. 2011. Children’s rights for all! Implementation of the UN Convention on the rights of the child for children with intellectual disabilities. Brussels: Inclusion Europe. Laugeson, E., Gantman, A., Kapp, S., Orenski, K. and Ellingsen, R. 2015. A randomized controlled trial to improve social skills in young adults with autism spectrum disorder: The UCLA PEERS® program. Journal of Autism and Developmental Disorders 45(12), pp. 3978–3989. Letrello, T. M. and Miles, D. D. 2003. The transition from middle school to high school: Students with and without learning disabilities share their perceptions. The Clearing House 76(4), pp. 212–214. MacArthur, J., Sharp, S., Kelly, B. and Gaffney, M. 2007. Disabled children negotiating school life: agency, difference and teaching practice. International Journal of Children’s Rights 15(1), pp. 99–120. Makin, Ch., Hill, V. and Pellicano, E. 2017. The primary to secondary school transition for children on the autism spectrum: A multi-informant mixed methods study. Autism & Developmental Language Impairments 2, pp. 1–18. Marshall, S., Goessling, K., Young, R. and Wozniak-Molnar, A. 2019. Researching the transition to high school for adolescents with a disability: qualitative action-project method as an exemplar approach. International Journal of Disability, Development and Education 66(4), pp. 389–408. Martínez-Cao, C., Gómez, L. E., Alcedo, M. Á. and Monsalve, A. 2021. Systematic review of bullying and cyberbullying in young people with intellectual disability. Education and Training in Autism and Developmental Disabilities 56(1), pp. 3–17. Matheson, C., Olsen, R. J. and Weisner, T. 2007. A good friend is hard to find: friendship among adolescents with disabilities. American Journal on Mental Retardation 112(5), pp. 319–329. McCoy, S., Shevlin, M. and Rose, R. 2020. Secondary school transition for students with special educational needs in Ireland. European Journal of Special Needs Education 35(2), pp. 154–170. Mishna, F. 2003. Learning disabilities and bullying. Journal of Learning Disabilities 36(4), pp. 336–347. Mitchell, C. 2011. Doing visual research. London: Sage. Mortier, K., Desimpel, L., de Schauwer, E. and van Hove, G. 2011. I want support, not comments: children’s perspectives on supports in their life. Disability and Society 26(2), pp. 207–221. Norwich, B. 2020. Transitions for students with special educational needs: implications for inclusion policy and practice. European Journal of Special Needs Education, pp. 1–7. O’Brien, P., McConkey, R. and García-Iriarte, E. 2014. Co-researching with people who have intellectual disabilities: Insights from a national survey. Journal of Applied Research in Intellectual Disabilities 27(1), pp. 65–75. O’Rourke, J. and Houghton, S. 2008. Perceptions of secondary school students with mild disabilities to the academic and social support mechanisms implemented in regular classrooms. International Journal of Disability, Development and Education 55(3), pp. 227–237. Pallisera, M., Fullana, J., Puyaltó, C. and Vilà, M. 2016. Changes and challenges in the transition to adulthood: Views and experiences of young people with learning disabilities and their families. European Journal of Special Needs Education 31(3), pp. 391–406. Pendergast, D., Bahr, N. and Main, K. 2017. Teaching middle years: Rethinking curriculum, pedagogy and assessment. London: Routledge.

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The Right to Grow Together Petry, K. 2018. The relationship between class attitudes towards peers with a disability and peer acceptance, friendships and peer interactions of students with a disability in regular secondary schools. European Journal of Special Needs Education 33(2), pp. 254–268. Pitt, F., Dixon, R. and Vialle, W. 2019. The transition experiences of students with disabilities moving from primary to secondary schools in NSW, Australia. International Journal of Inclusive Education, pp. 1–16. Prieto, O. and Feu, J. 2018. What type of impact could social mentoring programs have? An exploration of the existing assessments and a proposal of an analytical framework. Pedagogía Social. Revista Interuniversitaria 31, pp. 153–167. Richter, M., Flavier, E., Popa-Roch, M. and Clément, C. 2019. Perceptions on the primarysecondary school transition from French students with autism spectrum disorder and their parents. European Journal of Special Needs Education 35(2), pp. 171–187. Rome, A., Hardy, J., Richardson, J. and Shenton, F. 2015. Exploring transitions with disabled young people: our experiences, our rights and our views. Child Care in Practice 21(3), pp. 287–294. Rose, C. A., Monda-Amaya, L. E. and Espelage, D. L. 2010. Bullying perpetration and victimization in special education: a review of the literature. Remedial and Special Education 32(2), pp. 114–130. Scanlon, G. 2019. Pupil experiences: moving from primary to post-primary school in Ireland. In G. Scanlon, Y. Barnes-Holmes, M. Shevlin and C. McGuckin (eds.), Transition for pupils with special educational needs: Implications for inclusion policy and practice. Oxford: Peter Lang, pp. 33–50. Scanlon, G., Barnes-Holmes, Y., Shevlin, M. and McGuckin, C. 2019. Transition for pupils with special educational needs: Implications for inclusion policy and practice. Oxford: Peter Lang. Shevlin, M. 2019. Making the move: smoothing the path to post-primary education. In G. Scanlon, Y. Barnes-Holmes, M. Shevlin and C. McGuckin (eds.), Transition for pupils with special educational needs: Implications for inclusion policy and practice. Oxford: Peter Lang, pp. 77–95. Strnadová, I. and Cumming, T. M. 2016. Lifespan transitions and disability. A holistic perspective. London: Routledge. Susinos, T. and Parrilla, M. 2008. Dar la voz en la investigación inclusiva. Debates sobre inclusión y exclusión desde un enfoque biográfico-narrativo [Giving voice in inclusive research. Debates on inclusion and exclusion from a biographical-narrative approach]. Revista Electrónica Iberoamericana sobre Calidad, Eficacia y Cambio en Educación 6(2), pp. 157–171. Tarleton, B. and Ward, L. 2005. Changes and choices: finding out what information young people with learning disabilities, their parents and supporters need at transition. British Journal of Learning Disabilities 33(2), pp. 70–76. Vlachou, A. and Papananou, I. 2014. Disabled students’ narratives about their schooling experiences. Disability & Society 30(1), pp. 73–86. Webster, R. and Blatchford, P. 2013. The educational experiences of pupils with a statement for special educational needs in mainstream primary schools: Results from a systematic observation study. European Journal of Special Needs Education 28(4), pp. 463–479. Wendelborg, C. and Tossebro, J. 2010. Marginalisation processes in inclusive education in Norway: A longitudinal study of classroom participation. Disability & Society 25(6), pp. 701–714. Woodgate, R. L., Gonzalez, M., Demczuk, L., Snow, W. M., Barriage, S. and Kirk, S. 2019. How do peers promote social inclusion of children with disabilities? A mixed-methods systematic review. Disability and Rehabilitation 42(18), pp. 2553–2579. Wright, M. F. 2021. School bullying among students with intellectual disabilities: Predictors, outcomes, and recommendations. In Research Anthology on Physical and Intellectual Disabilities in an Inclusive Society. Pennsylvania: IGI Global, pp. 1888–1910.

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34 SEX, LOVE, AND HUMAN RIGHTS Sexual Rights for Children and Youth Experiencing Disability Michelle Janzen The barriers to the sexual expression of disabled people are primarily to do with the society in which we live, not the bodies with which we are endowed. Tom Shakespeare (2000, p. 161)

Sexuality includes the biological and physiological changes associated with puberty (although not limited to these changes), the development of sexual attraction, and the desire to form intimate relationships with others (Wiegerink et al. 2011). Young disabled people experience sexual development at relatively the same trajectory as their non-disabled peers, have the same sexual desires, and report being just as sexually active (Sellwood, Raghavendra, and Jewell 2017). However, due to social discourses on disabled sexuality, young people are often perceived as asexual, hypersexual, and sexually deviant, thus precluding them as sexual right holders (Drexler 2018). Sexual rights include the opportunity to explore and develop one’s sexuality, access sexuality, health, and reproductive education (SHRE), make autonomous and informed decisions about one’s sexual health and body, form intimate relationships with others, and have diverse gendered and sexual identities (Loeser et al. 2018). Yet some research suggest that as a result of inequitable access to sexual rights, young disabled people are three times more likely to be victims of sexual abuse and exploitation (Stein, Kohut and Dillenburger 2018), have rates of sexually transmitted infections (STIs) eight times greater than their typical peers, and experience poorer overall sexual health (Frawley and Wilson 2016; WHO 2015). Recognition that young disabled people are sexual rights holders and citizens is critical to the goal of this chapter. As such, through the United Nations Convention on the Rights of the Child (1989) (CRC) and the United Nations Convention on the Rights of Persons with Disabilities (2006) (CRPD), I argue that access to sexual

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rights for disabled youth is equally as crucial as other rights-based policies. However, barriers to equitable sexual rights are often embedded within Western social discourses that view disabled sexuality as either requiring protection or in need of risk management. Loeser et al. (2018) state that protectionism situates disabled people as inherently childlike, vulnerable, and asexual, thus needing to be protected from the explicitness of sex and sexuality, while risk management views disabled individuals as sexually deviant or hypersexual and whose sexuality needs to be controlled. Although adults may believe that protectionism and risk management are effective safeguarding tools, they do little to support sexual rights and autonomy. Furthermore, they reinforce hegemonic norms that desexualise disabled bodies and increase the young person’s risk of harm and exploitation. From a Global North context, I examine why sexual rights are critical to the well-being of young disabled people. I first briefly discuss the history of disability and sexual rights and its influence on sexual rights barriers. I then explore how current beliefs about protectionism and risk management impact the ability of young disabled people to access three specific sexual rights: the right to form intimate relationships, the right to authentic gendered and sexual identities, and the right to access SHRE. Lastly, I discuss why access to these rights protects young people from potential harm and supports their right to autonomous sexual lives.

A Brief History on Disability and Sexual Rights The sexual rights of disabled individuals have long been policed by those in power, either judicially or through influential hegemonic social discourses embedded in religious, moral, and medical beliefs (Foley 2017). From the late 1800s to the early 1900s, medical and scientific knowledge contributed to social discourses embedded within risk management that linked ‘feeblemindedness’ to crime, deviance, poverty, disease, and sexual promiscuity (Stein and Dillenburger 2017). As a result, disabled people were viewed as a moral threat to the foundation of society, fearing that allowing the disabled to procreate would ‘contaminate’ the population. Such beliefs propounded the eugenics movement (1880–1940), in which individuals with disabilities were denied their sexual rights and freedoms through practices of forced sterilisation and institutionalisation (Owen et al. 2009). Sexual rights were most notably rejected in 1927, when the use of forced sterilisation was upheld as constitutional by the United States Supreme Court, with Oliver Wendall Holmes stating that ‘three generations of imbeciles are enough’ (Richards et al. 2009, p. 185). The recognition of disabled individuals as sexual rights holders was further impeded during the late 1940s to early 1950s when the focus on mental age became popular. Owen et al. (2009) note that, as a result, disabled people housed in institutions were infantilised by being dressed and treated as perpetual children, thus reinforcing the discourse of innocence and asexuality. It was not until the 1970s that the sexual rights of disabled people began to get some recognition. During the rise of the civil rights and feminist movements, Wolf Wolfensberger became an advocate for the deinstitutionalisation and the normalisation of disabled people, arguing that disabled people should be included in 617

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everyday society and live as normally as possible (Wendall 1996). The normalisation movement led to better positioning of disabled people to enjoy the same aspects of life as non-disabled people, including areas in sexuality.

Sexual and Human Rights Policies Along the same time as the civil rights movement, the concept of sexual rights was officially recognised in 1975 by the World Health Organisation (WHO). They declared healthy sexuality a contributing factor to mental well-being and a right for all individuals. WHO (2015, p. 15) defines sexual rights as a state of physical, emotional, mental and social well-being about sexuality; it is not merely the absence of disease, dysfunction, or infirmity. Sexual health requires a positive and respectful approach to sexuality and sexual relationships and the possibility of having pleasurable and safe sexual experiences, free from coercion, discrimination, and violence. For sexual health to be attained and maintained, the sexual rights of all persons must be respected, protected, and fulfilled. In 1997, at the 13th World Conference of Sexology in Valencia, Spain, the Valencia Declaration of Sexual Rights (Institutio de Sexologia Y Psicoterapia Espill 1997) was developed and stated that all individuals, regardless of ability, age, sex, religion, race, social class, or sexual orientation, have the right to sexual equality and equity. Almost a decade later, the CRPD outlined in Article 23 (Respect for Home and the Family) and Article 25 (Health) that persons with disabilities have the right to access all matters of family, marriage, and parenthood without discrimination and the right to equitable access to sexual health and reproductive information and services. In 2015, the WHO released a report, titled Sexual Health, Human Rights, and the Law, which highlights that equitable access to sexual rights is not only critical in ensuring the physical and emotional safety of disabled young people but that these rights often coincide and safeguard their ability to achieve other child rights as outlined in the CRC. Coinciding child rights include the right to be free from discrimination (Article 2), to have the child’s best interest considered in all areas of their life (Article 3), access to all information relevant to their life and health (Article 24), and the right to be protected from harm (Article19). Most important is the right to actively participate in all decisions impacting the child’s life (Article 12). Within sexual rights, active participation means that young disabled people have the right to autonomously develop their sexuality on their terms, based on their values and beliefs and without the coercion or influence of others (Christman 2013).

Autonomy Versus Protectionism Fundamental to the CRC and the CRPD is recognising that young disabled people are autonomous citizens, granted equal rights and freedoms under the law. Within sexual rights, autonomy means that young people have the right to exercise 618

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self-control over their sexual behaviours, actions, and decisions. Mullin (2013) argues that to be autonomous within sexual rights, young people must have the ability to engage in sexual behaviours voluntarily, identify and understand the benefits and consequences of their sexual actions, know how to distinguish instances of manipulation or coercion, and understand what socially appropriate sexual behaviour is. However, both the CRPD and the CRC recognise that not all disabled people can safely make autonomous decisions due to age, capacity, or maturity. Article 3 (Best Interest of the Child) of the CRC (1989) and Article 7 (Children with Disabilities) of the CRPD (2006) stipulate that in situations where the child cannot make autonomous decisions safely, adults must act in a paternalistic role to protect them from harm while simultaneously promoting their best interests. Godwin (2020) notably highlights that the concept of best interest is highly contested and deemed morally problematic in terms of rights. The issue lies within the adult’s intent, as caregivers may prioritise their interests, beliefs, or values over the child’s best interest. Foley (2017) adds that when adults make decisions for young people even when they have the capacity and ability to do so for themselves, or by frequently choosing to err on the side of caution rather than fostering the young person’s autonomy, the intent is not representative of paternalism. Essential to paternalism is recognising that while some young people may have difficulty making appropriate choices, it does not mean they cannot. Mullins (2013) argues that to consider the young person’s evolving capacity, adults are obligated to provide the young person with any relevant information to help them make an informed decision about their actions. Godwin (2020) further highlights that any restriction that has been imposed on the young person, without first having provided access to information that considers their evolving capacity, fails to consider the child’s best interest and violates their sexual rights.

The Right to Sexual Lives and Relationships According to the WHO (2015), developing intimate relationships with others is critical to overall human well-being. As such, disabled young people have the right to explore their sexuality privately and pursue intimate relationships in a safe, legal, and developmentally and age-appropriate manner. Frawley and Wilson (2016) highlight that, just like their non-disabled peers, young disabled people report the desire to create intimate relationships with others and dream of marriage and children. Article 23 (Respect for Home and Family) of the CRPD states that all disabled individuals have an equal right to marriage, parenthood, and relationships. Article 16 (Right to Privacy) of the CRC states that no child shall have unlawful or arbitrary interference with their privacy, including sexual life. Access to these rights is supported when young people are provided with the opportunity to socialise with their peers and develop the necessary socio-sexual skills to form safe and healthy relationships. However, adults often enforce rules and regulations over young people’s sexuality due to beliefs about protectionism and risk management. Ironically, rules created to protect young people may only increase their risk of harm while simultaneously impeding their sexual rights and citizenship (discussed in more detail next). 619

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Developing Socio-Sexual Skills and Rules on Dating Toft, Franklin, and Langley (2019a) note that it is natural for young people to start spending more time independently and privately socialising with their peers during adolescence while spending less time under adult supervision. Through socialisation, adolescents build friendships, develop a sense of belonging and inclusion, and explore their sexuality. Sellwood et al. (2017) add that adolescents learn critical socio-sexual skills during this period for transitioning into adulthood and foundational to human development. Socio-sexual skills include navigating and maintaining age-appropriate relationships, understanding socio-sexual norms, creating sexual etiquette, and learning the necessary rules and norms of peer interactions, all of which are essential to social inclusion and peer acceptance (Murphy et al. 2006). Shakespeare (2000, 2014) highlights that, while young disabled people wish to socialise and form relationships with their peers, they are sometimes segregated by their impairment. Functional limitations in communication, cognition, medical needs, or physicality can make peer socialisation difficult (Murphy et al. 2006). For instance, Frawley and Wilson (2016) discuss that the nature of a young person’s impairment may necessitate the need to have caregivers who are closely involved in their lives, including having them present within social situations. As such, young people may be further marginalised due to their inability to freely and privately socialise with others, explore their sexuality, and form intimate relationships with their peers, while in other cases, young people experience restrictions resulting from overprotective parenting. Heifetz et al. (2020) point out that it is generally not uncommon for parents to initially enforce rules and restrictions that regulate the young person’s pace of intimate relationships to teach them about appropriate sexual boundaries and social norms. The authors discuss that, eventually, many parents will decrease restrictions and give the young person more autonomy in the decision-making of their sexual lives. However, in many other cases, parents may prioritise protectionism over independence due to concerns about the child’s actual or perceived vulnerabilities. Linton and Rueda (2015) highlight that protection is not always unjustifiable, as some statistics suggest that disabled young people are at increased risk for intimate partner violence, sexual manipulation/coercion, and unplanned pregnancies, as discussed further down. Shildrick (2007) and Shakespeare (2014) state that, when adults prioritise protectionism over autonomy, the lives of young disabled people can become highly regulated. The issue is that adults fail to consider how rules enforced to protect young people may impact them beyond the current moment or context. For example, rules that restrict socialisation may prevent the young person from developing the necessary socio-sexual skills to form healthy, intimate relationships within adulthood or knowledge on how to identify harmful ones. Franklin and Smeaton (2017, p. 478) describe Ellie, a participant within their study, who was exposed to such strict rules about socialising with others that it eventually contributed to being exploited within a relationship: Ellie described how, because of a medical condition, her particular school insisted that her mum had to pick her up and drop her off every day and 620

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that she must not step outside the gate even if she could see her mum coming down the street. Ellie had little opportunity for socialising and was not prepared for adult life and for moving into a supported living accommodation. She thought the man she met at her new home was her boyfriend, but he was controlling and isolated her from her family and then exploited her.

Rules and Risk-Taking Although the intent of creating rules about dating and sexuality may be to prevent any risk of harm to young people, Triska (2018) argues that adults must recognise that regardless of ability, there is always an element of natural risk-taking that occurs within sexual interactions (e.g. a broken condom). Just as non-disabled young people have the right to take these risks, so do disabled people. The difference is that young disabled people may lack the experience or sexual knowledge of handling a natural risk due to adult restrictions that limit their ability to socialise and develop socio-sexual skills. Furthermore, restrictive rules over young people’s autonomy may lead them to rebel and engage in harmful sexual risk-taking, such as having secret sexual relationships (Shakespeare 2014), practising unsafe sex (Frawley and Wilson 2016), engaging in sexual activities in public places (McClelland et al. 2012), and being more prone to online sexual exploitation (Engelen et al. 2020; Franklin and Smeaton 2017). For example, in a study by McClelland et al. (2012), young disabled people described how excessive rules enforced by their caregivers led them to take sexual health risks and engage in sexual activities in unsafe outdoor public spaces and bathhouses: I’ve gotten laid in parks, back alleys, behind stores, anywhere. You can practically name it. (19-year-old male) (p. 815) [Y]ou many not know who you are having sex with, and they may have an STI, or HIV and not know it, or not tell you. (Participant) (p. 816) The point is that placing limitations on young disabled people’s sexual rights is not always in their best interest, nor does it guarantee their protection. Instead, restrictions and rules may only contribute to young people rebelling and attempting to access these rights at any cost (Engelen et al. 2020). A professional, interviewed in the study by Franklin and Smeaton (2017, p. 478), explains how restrictions can lead to adverse outcomes such as online sexual risk-taking and exploitation: Young people with learning disabilities are a perpetrator’s dream. . . . They’re often lonely and isolated. Many of them have not had a boyfriend or a girlfriend but would like one. Many spend a lot of time online. They are less likely to understand that sexual exploitation is wrong and are so easy to groom. 621

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Therefore, the goal should be to take a positive risk management approach, which can be achieved through fostering autonomy, providing information on what to do if a sexual risk occurs, helping to support and identify appropriate relationships and providing safe spaces for young people to explore their sexuality—all of which can help prevent harmful sexual risk-taking while fostering their sexual rights.

Rules vs Power and Control Rules and restrictions that consider the young person’s unique needs while simultaneously promoting sexual autonomy and citizenship can be beneficial in fostering sexual rights. However, Shildrick (2007) argues that in some cases, when young disabled people are subjected to excessive and oppressive regulations and rules over their sexuality, the intent is less about protection and more about the need to have power and control over a perceived subversive population. Under these pretences, Mullins (2013) notes that the restrictions ignore the child’s rights and best interest and may cause more harm. Shildrick (2007) further points out that implementing oppressive and excessive rules is frequently about reinforcing discriminatory and heteronormative sexual discourses that work to subjugate disabled sexuality. Young disabled people have reported a range of severity in the types of excessive and oppressive rules they have experienced over their sexuality by others. For example, in extreme cases, young people have described being punished, grounded, or threatened for breaking the rules and subject to the use of chemical restraints as retribution for non-heteronormative expressions of sexuality or engaging in selfpleasure (McClelland et al. 2012; Santinele Martino 2017; Toft et al. 2019b). Stein and Dillenburger (2017) also provide reports of young disabled people experiencing profound violations of their right to privacy, including being prohibited from accessing their bedroom to masturbate, adults’ refusing to knock before entering, and removing bedroom doors for increased surveillance. Rules so excessive such as those just noted lack any resemblance to the best interest, protectionism, or paternalism principles. Instead, the only apparent goal is to silence and subjugate disabled bodies and render their sexuality invisible.

The Right to Diverse Sexual and Gendered Identities Intertwined with the right to form intimate relationships is the right to an authentic gendered and sexual identity. Shakespeare (2014, p. 211) points out that, despite common misconceptions, ‘disabled people are heterosexual, bisexual, lesbian, gay and transexual in much the same way as non-disabled people’. According to the WHO (2015), all persons, regardless of ability, have the right and freedom to determine and express one’s gender and sexual identity without stigma or discrimination. Sexual and gendered identities are part of the identity construction process essential for development. Identity construction includes how a person perceives themselves and how they express or portray themselves to others (Ramasamy 2020). Forber-Pratt et al. (2017) discuss that, for disabled young people, identity development can be more challenging. Not only must they develop a sense of who they are (including sexually) and how they 622

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fit within their world but must also negotiate how they view their impairment and the way others socially construct it. Therefore, identity development is highly interactional and is influenced by the young person’s parents, peers, and society (Wilkinson Theodore and Raczka 2015). Ahlin (2018) notes that the ability to express an authentic identity is predicated on the young person’s ability to be autonomous; however, autonomy to express original gendered and sexual identities is often constrained by two common barriers: how others view the dual identities of disability and sexuality and the practice of diagnostic overshadowing—both discussed in more detail next.

Dual Identities Some research has suggested that when young people have dual identities of disability and diverse sexualities, adults tend to place greater emphasis on the identity of disability (Dinwoodie, Greenhill and Cookson 2020; Ramasamy 2020). For example, in a study by Wilkinson et al. (2015), young people with intellectual disabilities reported struggling to have their sexual identity seen as ‘normal’ and taken at face value. They expressed frustration that they were treated as childlike and that their sexual identities were often dismissed or not taken seriously by adults. Garland-Thomson (2009) states that adults in caregiving positions often ignore young disabled people with diverse sexual and gendered identities because they frequently assume that the essence of disability cancels out all other identities and qualities. The result is that the adult reduces a complex and multifaceted young person to a single attribute and thus fails to recognise them as equal sexual rights-holders and citizens. Wendall (1996) argues that heteronormative presumptions about sexuality and disability complicate young people’s sexual rights and leave them silenced and subjected to personal and public invalidation by others, thus denying them the right to whole-person status. For example, Santinele Martino (2017) found that, when young disabled people express diverse sexual and gendered identities, some adults fail to attribute these identities as authentic but instead are inclined to believe the expressions are a phase or part of the natural confusion young people experience while progressing towards identities of heterosexuality. In the study by Toft et al. (2019a, p. 163), Bridget, a young disabled person, describes how others dismissed her identity as a phase: People tend to, you know, [say] you’re still young, they think you could change, they think you could just turn and do whatever. [They say] ‘Oh you’re not sure that you’re gay yet.’ Similarly, Anthony, a young disabled person interviewed by Dinwoodie et al. (2020, p. 9), expresses his frustration that his authentic sexual identity conflicts with his identity of disablement, saying: People have the view that people with learning disabilities can’t make their mind up about sexuality . . . folks just say like it’s a phase’ . . . ‘I’m fully out as a gay man [PAUSE] gay man with learning difficulties. 623

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Diagnostic Overshadowing The tendency for adults to dismiss the sexual and gendered identities of young disabled people may be exacerbated by the practice of diagnostic overshadowing. Oliver (2009) defines diagnostic overshadowing as the process in which every lived experience of the young person is misinterpreted and misattributed to be a series of signs, symptoms, or manifestations of their impairment. Within sexual rights, Toft et al. (2019b) suggest that the practice of diagnostic overshadowing is often used as a tool to help ‘explain the gay away’ and account for expressions of non-heteronormative behaviours in young disabled people. Strang et al. (2018, p. 4,049) supported these findings, with a young participant describing how others used their diagnosis of autism to invalidate their identity as transgender: So, when I first came out they said something like, ‘you know there is a lot of overlap between people who are on the spectrum and people who are transgender.’ I wondered if they meant, ‘Are you sure this isn’t just the autism talking?’ Wendall (1996) points out that the practice of diagnostic overshadowing is embedded within the medical model. As a result, disabled individuals and their sexuality have long been pathologised and medicalised, contributing to barriers in sexual rights. She argues that given the cognitive and social authority that medicine has within society, the use of diagnostic overshadowing has the power to describe, validate, or invalidate bodily experiences and reinforce discourses of heteronormativity. It is even more problematic when parents and caregivers value professionals’ opinions due to their social standing that situates them as experts and truth-tellers, even when their child is not convinced or to the child’s detriment (Mullins 2013; Wendall 1996). Both Strang et al. (2018) and the WHO (2015) argue that when the rights of the young person conflict with the opinions of others, diagnostic overshadowing can result in a significant malaise in terms of the young person’s mental health and increase their risk for suicidal ideation and suicide. For example, in the study by Strang et al. (2018, p. 4,046), a transgender autistic youth said, ‘If I didn’t transition, I’d probably kill myself within ten years’ while describing their likely outcome had they continued to be subjected to diagnostic overshadowing and denied access to hormone therapy and reassignment surgery. The sexual and gendered identities of young disabled people deserve to be viewed as authentic expressions of self. However, Ahlin (2018) points out that the practice of diagnostic overshadowing may be required in some cases, mainly if a young person changes their mind frequently or cannot understand or explain what their identity means. In these instances, the use of professional and legitimate formal assessment and counselling may be in the child’s best interest. A proper evaluation can encourage the young person’s sexual rights by providing them with the appropriate information to help make an informed decision about their identity while respecting their views, expressions, and evolving capacity. 624

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The Right to Sexual Education Given the existing barriers that young disabled people experience in accessing their sexual rights, SHRE is arguably the most effective and critical tool in supporting young disabled people. Not only does SHRE promote their sexual rights, but it is also more likely to foster their well-being than any type of rules or restrictions that might be enforced under the guise of protectionism and risk management. SHRE promotes healthy relationships, sexuality, and identity and helps with healthy sexual development. Healthy sexual development includes feelings of value, positive selfesteem, and increased self-efficacy, which can help foster healthy relationships and sexual identities (McDaniels and Flemming 2018). Furthermore, SHRE helps in the development of socio-sexual skills by teaching disabled young people about puberty, gender role identity and socialisation, sexual orientation, consent, hygiene, routine reproductive healthcare, safe-sex practices, and identifying one’s values and beliefs about sexuality (Krantz et al. 2016; Stein et al. 2018). Lastly, access to SHRE is an essential preventative measure in helping young people identify sexual abuse and exploitation while decreasing the risk of STIs and unplanned pregnancies (Higgins 2010; Krantz et al. 2016). Article 25 of the CRPD and Articles 24 (Right to the Highest Standard of Health) of the CRC state that disabled young people must be provided with equal access to the same range and quality of healthcare and information as others and to assist them in their ability to protect themselves from illness and disease, including matters of sexuality and reproductive health. The WHO (2015) asserts that individuals’ ability to achieve sexual health and well-being depends on their ability to access age, context, and developmentally appropriate comprehensive information in a positive and supportive environment that fosters non-discrimination, tolerance, and respect for others. Furthermore, young disabled people should be given the necessary time and support to help them make informed decisions about their sexual lives. However, despite the numerous benefits of SHRE, young disabled people continue to experience two critical barriers: access to SHRE and the type of content they are taught.

Issues of Access Disabled young people frequently report that despite wanting sexual education, they are either denied SHRE outright (Shildrick 2007) or only provided with minimal content (Frawley and Wilson 2016). The inability to access SHRE results in fewer opportunities for young disabled people to receive formal and accurate information sources. Lack of access causes them to have significantly lower levels of sexual knowledge than their non-disabled peers and an increased risk of poor sexual outcomes (Engelen et al. 2020; Heifetz et al. 2020). Adult attitudes, values, and beliefs often affect the decision to provide SHRE. For example, in studies by McDaniels and Fleming (2018) and Stein et al. (2018), adults reported denying access to SHRE due to personal beliefs that the information was either too explicit for young people (protectionism) or that it might cause the young person to act out sexually (risk management). Ashley, a special education teacher, interviewed in the study by Krantz 625

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et al. (2016, p. 5), further describes how parental beliefs about disabled sexuality can complicate young people’s access to sexual education: There’s like this idea that parents have, that people with disabilities shouldn’t be allowed to be sexual, but I don’t think that’s right. I think everybody deserves to be loved and be in a relationship, and if they want to have sex or do sexual things, they should be educated about it. I feel like parents of kids who have disabilities are like, ‘Oh, that’s farfetched. My kid wouldn’t want to [have a romantic relationship]. Parents think there’s a stigma for people who have disabilities because they’re [viewed as] asexual. [Parents say], ‘Oh they have a disability, they don’t even think about stuff like that’, but I mean, some of [the students with DD] do. Other studies suggest that caregivers and professionals fail to provide SHRE because they lack the appropriate training and access to adaptive resources and materials (Engelen et al. 2020; East and Orchard 2013). As a result, adults tend to pass the buck, hoping that others more qualified than themselves will take on the task. However, when adults try to shift the responsibility onto others, young disabled people are often left to seek out information on their own, using informal sources such as television, media, the internet, and pornography (Dewinter et al. 2017; Brown-Lavoie, Viecili and Weiss 2014). Aggleton et al. (2018) argue that, as a consequence, access to sexually explicit images, misinformation, and the inability to fact-check non-formal sources only complicates how young people learn about practising safe sex or sexually appropriate behaviour, increasing their risk for poor sexual health, exploitation, and offending.

Access to Curriculum Since young disabled people have a right to experience a healthy and sexually satisfying life, they require access to a comprehensive sexual education curriculum that supports and fosters their sexuality. However, due to ableist perceptions about disability and sex, young people report that their sexual health curriculum is frequently limited to content that is sex-negative and abstinence-based, heavily focused on biology and rules, and on the prevention of sexual abuse and victimisation, rather than promoting healthy sexual development (Daly et al. 2019; McDaniels and Fleming 2018; Sellwood et al. 2017). When adults fail to recognise young disabled people as sexual citizens or consider how their impairment may impact their sexual lives, abstinence and biology-based curriculum is problematic. For example, Goodley, RunswickCole, and Liddiard (2016, p. 780) provide an account by Terry, who describes how his teacher’s ableist perspectives within sexual education failed to consider that safe sex was a viable option due to his physical impairments and unintentionally placed him at risk for harm: ‘Today we’re going to learn how people with muscle weakness are going to put a condom on.’ I remember saying—‘to be fair you’re talking to someone 626

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who can’t even open a chocolate wrapper, so I haven’t got much hope, have I?’ I remember it was almost like a shock because he [teacher] said, ‘does that mean you’re not going to use contraception?!’and I said ‘well no, obviously I’d just ask the other person to put the condom on’ The previous example of Terry demonstrates why a more-inclusive curriculum is needed within sexual education. While Terry demonstrates the autonomy and capacity to find alternative solutions to practise safe sex, his experience is often the exception rather than the rule. In many cases, young people like Terry would lack any access at all to SHRE or conversation about how their impairment might impact their sexual health and well-being. Furthermore, suggestions of abstinence rather than teaching young people to learn and find alternative ways to engage in safe sexual experiences can unintentionally or not place young disabled people at risk for poor sexual health outcomes. Given the opportunity to access inclusive and adaptive SHRE, disabled adolescents can understand their sexuality and make safe and healthy autonomous decisions about their sexual lives. Providing more resources to adults, educators, and young people can not only destigmatise disabled sexuality but also help others consider the role a young person’s impairment plays in their sexual lives and find supportive and adaptive solutions that keep them healthy and safe.

Conclusion Foley (2017) argues that human rights allow young disabled people to occupy socially valued roles within society, including the right to express their sexuality in whatever manner they choose. Yet while young disabled people have the same sexual desires, impulses, and sexual development as their non-disabled peers, they do not have the same opportunities and freedoms to pursue them (Yildiz and Cavkaytar 2017). The challenge in accessing sexual rights seemingly lies within the power imbalance between young people and their caregivers. Young people’s sexual rights are often at the mercy of the attitudes, values, and beliefs of parents, teachers, and other professionals, who are too frequently conservative, are risk-averse, and fail to consider the young person’s best interests, evolving capacity, or autonomy (Foley 2017; Frawley and Wilson 2016; Stein et al. 2018). Godwin (2020) highlights that it is imperative to acknowledge that young disabled people are at a significantly higher risk of sexual abuse and exploitation. Therefore, adults must give critical consideration to protectionism and risk management practices. However, this situation does not negate the responsibility of adults to respect and value the sexual rights of young disabled people. Davies and Kenneally (2020) further argue that while most adults act with good intentions, rights violations occur when adults presume their paternalistic roles equate to ownership and control over access to sexual education and the young persons’ sexuality. Protectionism and risk management fail young people and are increasingly problematic when they deny disabled young people as autonomous sexual rights holders, preventing them from learning vital skills to function and stay safe in society. 627

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Therefore, Davies and Kenneally (2020) argue that the best way to begin fostering the sexual rights of young disabled people is to ensure access to SHRE. Through a human rights approach, the authors argue that for young disabled people to have equitable access to their sexual rights, SHRE needs to go beyond biology and include discussions on sexuality, gender identity, healthy relationships, consent, and reproductive health. Further, they argue that disabled sexuality needs to be discussed positively, where the curriculum seeks to remove social stigmas and attitudes and encourage more critical thinking. Yıldız and Cavkaytar (2017) further highlight that increased community support is needed in providing adults access to adaptive materials and training in providing SHRE to young disabled people. Not only can it help increase the number of adults who feel comfortable giving access to material on sexuality but may also help remove any possible stigma or discomfort in doing so. Even more critical is educating adults that SHRE is the most effective tool in preventing the risk of sexual harm. Rather than accessing SHRE as a response to a crisis, it should be considered a proactive approach to fostering the wellbeing of young disabled people and supporting them as sexual rights holders. Lastly, the use of public awareness and education campaigns can help destigmatise disabled sexuality. Shildrick (2007) and Shakespeare (2014) note that disabled people are often positioned as sexual outsiders, and therefore, more reflection within the public media is needed. Increased representation of sexuality and disability may help deconstruct social norms about sexuality. These authors further argue that many young disabled people grow up in a society where their sexuality is devalued and silenced, and they feel they have little control over their bodies. Having the ability to see themselves represented in a positive light within the everyday culture would not only help destigmatise disabled sexuality but also foster positive self-esteem and sexual identities. Furthermore, it teaches the young person that they are valued sexual citizens in their own, right and that their sexuality is supported. Sexual Rights and Sexuality Sexual rights include the opportunity to explore and develop one’s sexuality, access sexuality, health and reproductive education (SHRE), make autonomous and informed decisions about one’s sexual health and body, form intimate relationships with others, and have diverse gendered and sexual identities (Loeser et al. 2018). Sexuality includes the biological and physiological changes associated with puberty (although not limited to these changes), the development of sexual attraction, and the desire to form intimate relationships with others (Wiegerink et al. 2011). Useful reading: Valencia Declaration of Sexual Rights (Instituto de Sexologia Y Psicoterpia Espill, 1997). http://www.cirp.org/library/ethics/valencia1997/ WHO. 2015. Report: Sexual Health, Human Rights and the Law. https://apps. who.int/iris/handle/10665/175556

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Quotations from WHO ‘Sexual health, human rights and the law’ ‘Being able to determine and express one’s gender identity without stigma, discrimination, exclusion and violence is an important dimension of health and well-being and the enjoyment of human rights’ (2015, pp. 11). International human rights standards state that people with disabilities are entitled to health services, including those for sexual and reproductive health, on an equal basis with others, and to have control over their fertility. In particular, sexual health information and education should be made available in accessible formats. People with disabilities are entitled to the support and time they require to make informed decisions about matters of sexual and reproductive health. People with disabilities should not be subject to involuntary and/or forced interventions such as sterilization (2015, pp. 31). ‘The ability of individuals to achieve sexual health and wellbeing depends on them [people with disabilities] having: access to comprehensive information about sexuality; knowledge about the risks they face and their vulnerability to the adverse consequences of sexual activity; access to good quality sexual health care; and an environment that affirms and promotes sexual health’ (2015, pp. 12). Informed decision-making invokes several elements of human rights that are indivisible, interdependent, and interrelated. In addition to the right to health, these include the right to self-determination including reproductive self-determination, freedom from discrimination, security and dignity of the human person, and freedom of thought and expression (2015, pp. 25).

References Aggleton, P., Cover, R., Leahy, D., Marshall, D. and Rasmussen, M. 2018. Youth, sexuality and sexual itizenship. London: Routledge. Ahlin, J. 2018. What Justifies Judgments of Inauthenticity? HEC Forum 30(4), pp. 361–377. Brown-Lavoie, S. M., Viecili, M. A. and Weiss, J. A. 2014. Sexual knowledge and victimization in adults with autism spectrum disorders. Journal of Autism and Developmental Disorders 44(9), pp. 2185–2196. Christman, J. 2013. Relational autonomy and the social dynamics of paternalism. Ethical Theory and Moral Practice 17(3), pp. 369–382. Convention on the Rights of Persons with Disabilities. 2006. [online] [Accessed on 3 December 2020] Available from: https://treaties.un.org/doc/publication/UNTS/Volume%20 2515/v2515.pdf Convention on the Rights of the Child. 1989. [online] [Accessed on 3 December 2020] Available from: https://treaties.un.org/doc/Publication/UNTS/Volume%201577/v1577.pdf Daly, A., Heah, R., Liddiard, K., Tisdall, E. K. M. and Sutterluty, F. 2019. Vulnerable subjects and autonomous actors: The right to sexuality education for disabled under-18s. Global Studies of Childhood 9(3), pp. 235–248. Davies, A. W. J. and Kenneally, N. 2020. Cripping the controversies: Ontario rights-based debates in sexuality education. Sex Education 20(4), pp. 366–382. Dewinter, L, Van Parys, H., Vermieren, R. and van Nieuwenhuizen, C. 2017. Adolescent boys with an autism spectrum disorder and their experience of sexuality: An interpretive phenomenological analysis. Autism: The International Journal of Research and Practice 21(1), pp. 75–82.

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Michelle Janzen Dinwoodie, R., Greenhill, B. and Cookson, A. 2020. Them two things are what collide together. Understanding the sexual identity experiences of lesbian, gay, bisexual, and trans people labelled with intellectual disability. Journal of Applied Research in Intellectual Disabilities 33(1), pp. 3–16. Drexler, O. 2018. Disability and queerness: Exploration of disability and sexuality in autoethnographic and institutional ethnography 1. Michigan Sociological Review 32, pp. 133–147. East, L. J. and Orchard, T. R. 2013. Somebody else’s job: Experiences of sex education among health professionals, parents and adolescents with physical disabilities in southwestern Ontario. Sexuality and Disability 32(3), pp. 335–350. Engelen, M. M., Knoll, J. C., Rabsztyn, P., maas-van Schaaijk, N. M. and van Gaal, B. 2020. Sexual health communication between healthcare professionals and adolescents with chronic conditions in western countries: An integrative review. Sexuality and Disability 38(2), pp. 91–216. Foley, S. 2017. Intellectual disability and the right to a sexual life: A cContinuation of the autonomy/ paternalism debate. London: Taylor and Francis. Forber-Pratt, A., Lyew, D. A., Mueller C. and Samples, L. B. 2017. Disability identity development: A systematic review of the literature. Rehabilitation Psychology 62(2), pp. 198–207. Franklin, A. and Smeaton, E. 2017. Recognising and responding to young people with learning disabilities who experience or are at risk of child exploitation in the UK. Children and Youth Services Review 73, pp.474–481. Frawley, P. and Wilson, N. J. 2016. Young people with intellectual disability talking about sexuality education and information. Sexuality and Disability 34(4), pp. 469–484. Garland-Thomson, R. 2009. Disability, identity, and representation: An introduction. In T. Titchkosky and R. Michalko (eds.), Rethinking Normalcy. Toronto: Canadian Scholar’s Press Inc, pp. 63–74. Godwin, S. 2020. Children’s capacities and paternalism. The Journal of Ethics 24(3), pp. 307–331. Goodley, D., Runswick-Cole, K. and Liddiard, K. 2016. The dishuman child. Discourse: Studies in the Cultural Politics of Education 37(5), pp. 770–784. Heifetz, M., Lake, J., Weiss, J., Isaacs, B. and Connolly, J. 2020. Dating and romantic relationships of adolescents with intellectual and developmental disabilities. Journal of Adolescence 79, pp. 39–48. Higgins, D. J. 2010. Sexuality, human rights and safety for people with disabilities: The challenge of intersecting identities. Sexual and Relationship Therapy 25(3), pp. 245–257. Institutio de Sexologia Y Psicoterapia Espill. 1997. Valencia declaration on sexual rights. Valencia, Spain: Institute de Sexologia Psicoterapia Espill. Krantz, G., Tolan, V., Pontarelli, K. and Cahill, S. M. 2016. What do adolescents with developmental disabilities learn about sexuality and dating? A potential role for occupational therapy. The Open Journal of Occupational Therapy 4(2), pp. 1–18. Linton, K. F. and Rueda, H. A. 2015. Dating and sexuality among minority adolescents with disabilities: An application of sociocultural theory. Journal of Human Behavior in the Social Environment 25(2), pp. 77–89. Loeser, C., Pini, B. and Crowley, V. 2018. Disability and sexuality: Desires and pleasures. Sexualities 21(3), pp. 255–270. McClelland, A., Flicker, S., Nepveux, D., Nixon, S., Vo., T., Wilson, C., Marshall, Z., Travers, R. and Proudfoot, D. 2012. Seeking safer sexual spaces: Queer and trans young people labelled with intellectual disabilities and the paradoxal risks of restriction. Journal of Homosexuality 59(6), pp. 808–819. McDaniels, B. W. and Fleming, A. R. 2018. Sexual health education: A missing piece in transition services for youth with intellectual and developmental disabilities? The Journal of Rehabilitation 84(3), pp. 28–38. Mullin, A. 2013. Children, paternalism and the development of autonomy. Ethical Theory and Moral Practice 17(3), pp. 413–426. Murphy, N. A., Elias, E. R. and Council on Children with Disabilities. 2006. Sexuality of children and adolescents with developmental disabilities. Pediatrics 118(1), pp. 398–403.

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Sex, Love, and Human Rights Oliver, M. 2009. The social model in context. In T. Titchcovsky and R. Michalko (eds.), Rethinking normalcy: A disability studies reader. Toronto: Canadian Scholars Press, Inc. Owen, F., Griffith, D., Tarulli, D. and Murphy, J. 2009. Historical and theoretical foundations of the rights of people with intellectual disabilities: Setting the stage. In F. Owen and D. Griffiths (eds.), Challenges to the human rights of persons with intellectual disabilities. London: Jessica Kingsley Publishers. Ramasamy, V. 2020. Young, disabled and LGBT+ identities: Personal explorations of intersectional discrimination and support challenges. In A. Franklin and A. Toft (eds.), Young, disabled, & Lgbt+: Young identities and intersections. 1st edition. London: Routledge, pp. 159–177. Richards, D., Miodrag, N., Watson, S. L., Feldman, M., Aunos, M., Cox-Lindenbaum, D. and Griffths, D. 2009. Sexuality and human rights of persons with intellectual disabilities. In F. Owen and D. Griffiths (eds.), Challenges to the human rights of people with intellectual disabilities. London: Jessica Kingsley Publishers, pp. 184–218 Santinele Martino, A. 2017. Cripping sexualities: An analytic review of theoretical and empirical writing on the intersection of disabilities and sexualities. Sociology Compass 11(5), pp. e12471—n/a. Sellwood, D., Raghavendra, P. and Jewell, P. 2017. Sexuality and intimacy for people with congenital physical and communication disabilities: Barriers and facilitators: A systematic review. Sexuality and Disability 35(2), pp. 227–244. Shakespeare, T. 2000. Disabled sexuality: Toward rights and recognition. Sexuality and Disability 18(3), pp. 159–166. Shakespeare, T. 2014. Disability rights and wrongs revisited. 2nd edition. Abingdon: Routledge. Shildrick, M. 2007. Contested pleasures: The sociopolitical economy of disability and sexuality. Sexuality Research and Social Policy 4(1), pp. 53–66 Stein, S. and Dillenburger, K. 2017. Ethics in sexual behavior assessment and support for people with intellectual disability. International Journal on Disability and Human Development 16(1), pp. 11–17. Stein, S., Kohut, T. and Dillenburger, K. 2018. The importance of sexuality education for children with and without intellectual disabilities: What parents think. Sexuality and Disability 36(2), pp. 141–148. Strang, J. F., Powers, M. D., Knauss, M., Siborium, E., Leibowitz, S. F., Kenworthy, L., Sadikova, E., Wyss, S., Willing, L., Caplan, R., Pervez, N., Nowak, J., Gohari, D., Gomez-Lobo, V., Call, D. and Anthony, L. G. 2018. ‘They thought it was an obsession’: Trajectories and perspectives of autistic transgender and gender-diverse adolescents. Journal of Autism and Developmental Disorders 48(12), pp. 4039–4055. Toft, A., Franklin, A. and Langley, E. 2019a. Young disabled and LGBT+: Negotiating identity. Journal of LGBT Youth 16(2), pp. 157–172. Toft, A., Franklin, A. and Langley, E. 2019b. ‘You’re not sure that you are gay yet’: The perpetuation of the ‘phase’ in the lives of young disabled LGBT + people. Sexualities 23(4), pp. 516–529. Triska, A. M. 2018. Sexuality and intellectual disabilities: A guide for professionals. 1st edition. Routledge. [Accessed on 28 August 2020] Accessed from: https://www-taylorfrancis-com. Wendall, S. 1996. The rejected body: Feminist philosophical reflections on disability. New York: Routledge Taylor and Francis Group. Wiegerink, D., Roebroeck, M., Bender, J., Stam, H. and Cohen-Kettenis, P. 2011. Sexuality of young adults with cerebral palsy: Experienced limitations and needs. Sexuality and disability 29(2), pp. 119–128. Wilkinson, V. J., Theodore, K. and Raczka, R. 2015. ‘As normal as possible’: Sexual identity development in people with intellectual disabilities transitioning to adulthood. Sexuality and Disability 33(1), pp. 93–105. WHO. 2015. Sexual health, human rights, and the law. Geneva Switzerland Yıldız, G. and Cavkaytar, A. 2017. Effectiveness of a sexual education program for mothers of young adults with intellectual disabilities on mothers’ attitudes toward sexual education and the perception of social support. Sexuality and Disability 35(1), pp. 3–19.

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35 WHO IS WORTHY OF RIGHTS? An Analysis of Children Living at the Intersections of Disability, Citizenship, and Migration in the United States and Italy Valentina Migliarini and Chelsea Stinson Introduction The 2006 United Nations Convention on the Rights of People with Disabilities (2006) (CRPD) has recognised disabled people as equal rights holders, shifting the paradigm of disability from personal impairment to social oppression (Cobigo and Stuart 2010). In adopting a social relational rather than an individual model of disability, the CRPD recognises that disability is caused by discrimination and denial of citizenship and civic participation among other factors (Lawson and Beckett 2020). Further, by acknowledging the principle of equal rights, the CRPD recognises that the needs of every individual are of equal importance and that resources must be employed to ensure that every individual has equal opportunity for participation (Meekosha and Soldatic 2011). Other international documents, such as the Convention on the Rights of the Child (1989) (CRC) and the 1994 Salamanca Statement and Framework for Action on Special Needs Education (UNESCO 1994), brought the rights of disabled children to the fore (Hodkinson 2016). Article 23 of the CRC specifically recognises the rights of disabled children to participate and to be included in society, to be taught at school according to their needs, and to receive support and care. The Salamanca Statement and Framework of Action centres on disabled children and offers an outline of inclusive education as the vehicle for strategies outlined in the Education for All Report (UNESCO 2000). This Report aims to inform, influence, and sustain genuine commitment towards education for all children. The Salamanca Statement suggests that inclusive schools are ‘the most effective means for combating discriminatory attitudes, building inclusive society and achieving education for all’ (UNESCO 1994, iv). Further, it suggests 632

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that ‘inclusive schools can provide an effective education for children and improve the efficiency and cost-effectiveness of the entire educational system’ (UNESCO 1994, iv). In these documents, the recognition of disability as a human right implies a potential social and moral means to redress socio-structural processes of disablement, where social attitudes and state policy regimes are perceived as barriers to disabled people’s participation, inclusion, and representation (Meekosha and Soldatic 2011). The development of the disability rights framework has been of strategic importance for the international recognition of disability as a moral category of human status and the removal of the consistent representation of the ‘other’. Such a human rights framework ensures that disability is explicitly named and recognised as a category of human experience (Kayess and French 2008). However, human rights and disability rights have tended to privilege individual rights while marginalising collective struggles. The simplicity of the human rights discourse is particularly visible in the fact that there is only a certain extent to which all the aforementioned documents are binding. Thus, national governments are allowed to maintain sovereignty over the distribution of rights and definitions of inclusion (Miles and Singal 2010). For these reasons, human rights have largely been considered as advocacy tools and as guidelines for national education policies rather than obligations. The gap between promise and performance in the enactment of human rights and disability rights reflects normative incongruities between international human rights law and national policies, which have become more evident in recent times of neoliberal reforms in education and in society (Douzinas 2000). This chapter explores ways in which national jurisdictions distribute children’s rights according to citizenship, race, and migratory status. Focusing on the Italian and US contexts, the chapter shows how disability rights policies have largely failed to address the experiences of children living at the intersections of multiple forms of oppression. The chapter starts by presenting the intersectional framework of Disability Critical Race Theory in Education (DisCrit) and the social model of disability as the critical lens through which the national distribution of rights is analysed. This is followed by the presentation of Italian and US case studies. Finally, the chapter reflects on better practices to offer quality education and support to multiply marginalised students living at the intersections of race, disability, language, citizenship, and migratory status.

DisCrit In this chapter, the authors draw from DisCrit to argue about the unequal distribution of disability rights to children living at the intersections of race, citizenship, migratory status, and ability. DisCrit stems from the intellectual tradition of critical race theory (CRT) (Bell 1987) and disability studies (DS) (Bell 2006; 2011; Blanchett 2006; Connor 2008) and highlights how ability and race are interconnected and influence what constitutes the ‘norm’ (Annamma et al. 2013). That is, people are compared to a desired standard (e.g. White cisgender male, nondisabled, heterosexual, middle-class). Those who do not meet these requirements are more at risk to be 633

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labelled as abnormal and are often constructed as disabled students (Annamma 2018; Artiles 2013; Migliarini 2018). Multiply marginalised students at the intersections of race, migration, language, and citizenship are most at risk of suffering discrimination or being pathologised and exoticised during the disability diagnosis process or the drafting and implementation of inclusive tools, such as the individualised education programmes (IEPs). Depending on the contexts, different supporting tools can be used for students with disability or special educational needs. In the Italian context, the IEP is usually used for students with a certified disability, while students with learning disabilities are supported by personalised teaching plans (Piano Didattico Personalizzato- PDP). In addition, they tend to be considered disposable, not worthy of rights, and their narratives of oppression and marginalisation are often seen as unrealistic (Migliarini 2018). This chapter highlights how disability and children’s rights discourse often fails to guarantee quality inclusive education to disabled migrant children, especially those with a precarious citizenship status or who are unaccompanied. While we rely on all seven tenets of DisCrit, for the purpose of this chapter, we highlight Tenet 3, which offers that the constructs of race and ability are built in the social consciousness and that these productions have material consequences; Tenet 4, which privileges voices of marginalised populations traditionally not acknowledged in research; and Tenet 5, which considers legal and historical aspects of dis/ability and race and how they have been used separately and together to deny the rights of some citizens. We examine DisCrit affordances to broaden the discourse of disability rights and account for the lived experiences of children living at the intersections of disability, citizenship, and migration in the Italian and US contexts. DisCrit and the social model of disability are at the centre of the framing and analysis of this contribution, creating a necessary conceptual framework to address unequal distribution of rights in education and society. The following sections introduce the social model of disability and then present case studies from Italy and the United States, providing a critical analysis of how nation states distribute disability rights along the lines of citizenship and race.

Social Model of Disability The inconsistency between international human rights law and national policy discourse can be traced to policymakers’ adoption of the social model of disability, which recognises disability as a social construct and a collective—though not universal—social and political experience. The social model of disability emerged from the Union of the Physically Impaired Against Segregation’s ([UPIAS] 1976) seminal Fundamental Principles of Disability, which argued that physically disabled persons are oppressed by the barriers they face in society rather than their physical impairments (Oliver 1996; 2013). UPIAS specifically differentiated between physical impairment and mental illness in both iterations of this document. This model offers an ontological perspective of disability as an experience resulting from the social construction of impairment. The social model defines disability as a social problem, 634

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or ‘the disadvantage or restriction of activity caused by a contemporary social organisation which takes no account of people who have physical impairments and thus excludes them from mainstream social activities’ (UPIAS 1976, p. 14). Impairment, then, is the experience of ‘lacking part of or all of a limb or having a defective limb organism or mechanism of the body’ (UPIAS 1976, p. 14). Concepts and experiences of disability and disablement are often of nuanced and of central importance to social model literature, while impairment is often regarded as a medical or psychological condition. However, disability studies scholars who have shaped the field, such as Abberley (1987) and Goodley (2001), emphasise that impairment is not merely an individual attribute but evidence of the failure of social systems. As we discuss in this chapter, this nuanced view of disability and impairment through the social model is obscured in the ways it is engaged with in international disability rights laws and national policies. Such documents claim a social relational model perspective of disability yet fail to uphold the foundational idea of collective struggle and experience at the heart of seminal social model organising and scholarship. Rather, the national policies, implementation, and in the United States especially, litigation of educational and disability law and policy underscore an individualistic approach to distributing and enacting rights, especially for children. So although documents such as the CRPD conceptualise disability as a social construct, their failure to address the nuances of disability, impairment, and collective struggle leads to the enactment of inclusive education for a narrow category of children and families who already have the means to articulate and claim their rights.

Disability Rights and Unaccompanied Asylum-Seeking Children in Italy The case studies presented in this chapter tend to explicitly focus on how migratory status, citizenship, race, and disability intersect in the lives of migrant children in Italy and in the United States. The focus arose from the desire to address how disability rights, human rights, and state support are distributed by national governments based on said markers of identity. Thus, we had the necessity to address tensions and contradictions with the United States. Data from the Italian qualitative case study were collected between 2014 and 2016 and 2020. The study was based in nine refugee service centres in the city of Rome, and data collection and analysis followed the constructivist grounded theory methodological approach (Charmaz 2014). Data collection involved in-depth, semi-structured interviews with 27 participants, including educators, teachers, cultural mediators, and other professionals with different levels of experience in migration, and 10 migrant children from predominantly West African countries at different stages of their asylum request process. The professional participants were aged over 18 and participated voluntarily in the interviews; thus, although informed consent was sought via email, this did not include gaining a signed informed consent form from them. As far as migrant children participants were concerned, consent to participate in the interviews was given by the professionals working in the services where they were hosted. As established 635

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by Italian law, in foster care homes for unaccompanied migrants and forced migrant minors, professionals are nominated by the specific Court for Children (Tribunale dei Minori) to act as legal guardians of such minors. Although migrant children’s consent to participate in the interview process has been given by the professionals in the services, migrant children participants also give their assent. All the procedures employed throughout the study (for example, with regard to informed consent and guarding participants’ confidentiality) have been regarded as fully satisfactory according to the ethics requirements established by the Roma Tre University. The data presented in this section are mostly from Italian educators, teachers, and professionals operating in services for the inclusion of unaccompanied asylum-seeking children. The most recurring theme emerging from the analysis of Italian data is the systemic lack of intersectional support in services for unaccompanied minors and in schools. As most of the Italian professionals declared, services oriented to the integration of refugees and asylum-seekers are unequipped to offer disability-related services: We see that in first reception centres and transit centres for asylum-seeking children, there is no capacity and no competence to offer disability support. Also, there is no screening for mental health issues, even though most of the children might suffer from Post-Traumatic Stress Disorder (PTSD). What happens is that children with disabilities are accommodated in the same centres with non-disabled children and they are not offered initially any support, until when a specialist does a referral, which happens usually after a long time. (Francesco, Service 2) This excerpt shows how intake processes for forced migrant children do not consider the possibility of offering support for disabilities. It seems clear that disability is not considered for forced migrant children who are cast in a hegemonic narrative that perceives them as functioning subjects that need to be able to contribute to the economy of the host society (Migliarini 2017). Despite the implementation of disability rights and other human rights within Italian policies and laws, these intake processes preclude recognition of disabled identities illegible to White Western norms (Migliarini, Stinson, and Hernandez-Saca 2022). Francesco’s account aligns with DisCrit Tenet 3 that ‘emphasizes the social constructions of race and ability and yet recognises the material and psychological impacts of being labelled as raced or dis/abled, which sets one outside of the western cultural norms’ (Connor, Collins and Ferri 2015, p. 19). It expands Tenet 3 by adding the migratory status social construct component to the intersection of race and disability. Migrant students are labelled as disabled by imposed assessments and supports (Ahmed 2014), which do not affirm their cultural, racialised, linguistic, and disabled experiences, thus dehumanizing them within an affective atmosphere of practice (Wetherell 2012). Despite the implementation of the internationally celebrated policy of Integrazione Scolastica (i.e. school integration), promoting disability rights and envisaging the 636

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participation of all pupils, with or without disabilities, in the process of learning and, indeed, in society, disability in the Italian context is still highly medicalised and perceived as an individual deficit (Migliarini, Stinson, D’Alessio 2019). The medical language and attitude towards disability are evident not just in the referral process of disabled forced migrant children outside of reception centres but also within educational institutions. If disability is overlooked in reception centres, within schools forced migrant children seem to be increasingly exposed to processes of ‘SENitization’ (i.e. overrepresentation within special educational needs categories) (Bocci 2016) and have to address the issue of stigmatisation of difference. The educational and social experiences of asylum-seeking and refugee children within the Italian context demonstrate not only how the forces of racism and ableism circulate interdependently to uphold notions of normalcy, as DisCrit Tenet 1 affirms, but also how teaching, learning, and social practices have not been transformed in inclusive and non-medical terms. A pertinent example of the medicalisation of disability of forced migrant children in the Italian context can be found in the essentialist view of disability summarised by the following comment: It is almost impossible to find asylum seekers children with disabilities in reception centres here, as you know they cannot come by boat on a wheelchair. This was the opinion of the coordinator of a reception service for forced migrant children shared during an informal conversation related to the research project presented in this contribution. As Oliver (1990) would argue, this essentialist approach reflects categories of disabilities based upon medical or social scientific constructions and divorced from the direct experience of disabled people. In place of these medical/psychological accounts where disability is understood as medical classification or functional limitation, a social model of disability suggests that all disabled people experience disability as a social restriction, whether those restrictions occur as a consequence of inaccessible built environments, questionable notions of intelligence and social competence, the inability of the general population to use sign language, the lack of reading material in Braille, or hostile public attitudes to people with nonvisible disabilities, among others (Oliver 1990). The majority of the professionals in the refugee services considered in the case study presented here did not embrace the social model of disability and referred disability cases to specialised medical services. Giovanni offers an example of the medicalisation of disability within forced migrant services in the city of Rome. He reinforces and reproduces a medicalised view of disability while working in a service providing support for extremely vulnerable asylum-seeking children: We have two issues in respect to this [disability], the first one is ethical, the second is technical. The ethical issue relates to the fact that it is not correct to deal with the psychological traumas of unaccompanied asylum 637

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seeker children in a drop in service. They do not stay with us for a long time, so the kind of intervention that we do is promote resilience and not a therapeutic environment. Plus they are still sort of travelling so they are not open to talk about their issues. Very often the request for asylum comes up together with their problems, which may be post-traumatic stress disorders, learning difficulties and so on. (Giovanni, Service 2) Giovanni’s account makes clear, through a social scientific justification, that an institution already managing a marginalised group of children and youth (i.e. forced migrant teens outside of the reception centres) cannot possibly take into consideration the issue of disability. A further specialised therapeutic institution is needed to respond to raced/disabled asylum-seeking children and youth. Giovanni’s argument seems to support the sorting and categorising of disabled asylum-seeking children and, consequently, their marginalisation not only from the mainstream of social life but also from the mainstream of refugee services. Giovanni’s view, and that of the previous case study’s participants, operationalises DisCrit’s Tenet 5 by demonstrating how national jurisdictions use race and ability separately to deny rights of disabled forced migrant children and other multiply marginalised people. The referral of disabled forced migrant youth to local specialised medical institutions in Rome generates a great deal of ignorance among Italian professionals on young asylum-seekers’ and refugees’ social restrictions. This ignorance can be detrimental for children’s motivation in enjoying daily activities and practices that the Italian state expects them to do and can have negative consequences on the interpersonal relations that the youth establish: So, I’m thinking, there is a boy that is here with the family and he goes to secondary school. He is deaf but he never said something to us, nobody told us, but he always comes with the auditory apparatus. . . . He came to our service to attend Italian classes; he is a very sweet boy. This is a situation in which we did not investigate much, ehm but I think he continues to have auditory issues. I don’t think it’s just the problem of not knowing Italian, ehm even when he speaks with other fellows of his community, he has difficulties. He writes and reads perfectly, and he has problems only in speaking and listening. . . . It had it on both sides, and it is not a matter of unwillingness to learn Italian, I think he has this auditory problem. We should have investigated further, ehm for example on the school that he attends, to know which approach they use with him. (Anna, Service 8) The boy’s deafness is completely ignored by the teachers and educators in Service 8, which provides mainly cultural and educational support to young migrants and forced migrants, even if his disability is clearly affecting his proficiency in the Italian language and his schooling experience. What is interesting is that educators and 638

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professionals in this service did not show support of any sort to help him make his school experience a positive one. Anna recognises the laissez-faire approach the professionals working with her in the service had with this boy only when she was prompted to answer my (Migliarini 2017) questions on disability. The social model of disability reaches beyond the individual professionalism and the specialist training of professionals in relation to various disabilities, precisely because educators, teachers, and social workers spend a significant amount of time, and in some cases, they live with young asylum-seekers and refugees. It is perhaps in the healthcare services available to migrants and forced migrants, where doctors have the powerful role of allocating and sorting subjects in the needsbased system, that disability is seen even more as a clinical concept. Giacomo, the manager of a former health centre for the treatment of post-traumatic stress disorder (PTSD), spent a great deal of the interview to explain the medical practices and interventions to recognise and control PTSD symptoms in asylum-seeking and refugee youth: The majority of refugee children and youth . . . manifested explosive signs, that in psychiatry are called positive signs, ehm positive in the sense that they are manifested, but then you also have signs that are called negative, that you can’t see, they are not manifested, nonetheless they are not less intense or problematic, and most of the time people having negative signs suffers in silence. . . . And so the way in which the alert system by the majority of refugee organisations works is based only on positive signs that are quite peculiar of the PTSD. (Giacomo, Service 4) Particular attention is given to the ‘deviant’ behaviour that, according to Giacomo, characterises young refugees with PTSD traits: The most common symptoms that we found in young refugees are those that characterise the hyperarousal syndrome. . . . People suffering from hyper arousal are in a constant state of tension, are always on the point of exploding, they feel threatened, and therefore, they get defensive. It was very frequent among the young refugees that we saw in our centre. Outburst of anger is very common, and so is self-harm, but not for all. For example, self-harm is not common among refugees from Africa, but is much more common among the Afghans. Self-harm happens when they are in a status of dissociation, also known as somatic dissociation. . . . Other behaviours are that, for example, the children talk to themselves, they might sleep under the bed, they might not talk to anyone for a long time, and so on. (Giacomo, Service 4) Giacomo’s argument recalls an essentialist view of disability and of culture, as he associates different manifestations of trauma and suffering to race and refugee groups. 639

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The description of trauma and its effect on the subject in culturally essential ways is common for the medical professionals in health services for refugees, and it results in the formulation of discriminatory discourses. In addition, Giacomo emphasises the importance of identifying and curing the disability, or mental health issue, in time to avoid refugees’ marginalisation from society. Also, his concern is also avoiding problems for the national health system rather than promoting the well-being of the individual concerned. Identifying, sorting, curing, and controlling the deviant behaviour underpin the idea of refugees’ neoliberal integration as successes. As such, young asylum-seekers and refugees are constituted along axes of ability, effort, conduct—axes that themselves interact with biographical identities through discourses of race, religion, disability, migratory status, gender, special educational needs, and so on (Youdell 2006). Privileged biographical identities are recuperated and deployed within organisational discourse to constitute the bad asylum-seeker or the ‘unacceptable asylum seeker’ (Youdell 2006). Despite the widespread consideration of disability in a medicalised and culturally essential way within the context of refugee agencies in Rome—characterised by the paucity of mental health services for forced migrants, both adults and children—much more awareness is needed about the usefulness of an adequate and capillary medical and psychological support for PTSD among forced migrants, especially if young children. As a matter of fact, there is only one centre in the whole city of Rome that is specialised in such kind of support for the migrants, and for this reason, access to it might be a lengthy process.

Disability, Language, and Migration in the United States Much like in Italy, the intersection of migratory and disability status for migrant students in the United States is often viewed as ‘where the rubber meets the road’ (Kangas 2017, p. 19). This public discourse of contention is closely tied to the dominance of White, monolingual, and monocultural educators (NCES 2020), policymakers, and values which reflect the hegemonic normativity of Whiteness and Western cultural knowledge in public education systems across the country (Stinson and Migliarini 2022; Picower 2009). Following DisCrit Tenet 1, which affirms that ‘the forces of racism and ableism circulate interdependently, often in neutralized and invisible ways, to uphold notions of normalcy’ (Annamma, Connor, and Ferri 2013, p. 11), linguistically, culturally, and racially nondominant students become ‘dangerous’ threats to the normal classroom order (Annamma and Morrison 2018). As such, from the moment they enrol in US schools, migrant students are subjected to deficit-based screening processes to ascertain their normative linguistic and cultural knowledge. From there, they are often labelled as ‘English learners’—or, otherwise, ‘limited English proficient’—and typically placed in specialised classes, programmes, or even separate schools to remediate their Englishlanguage proficiency. As these processes are rooted in traditional special education frameworks steeped in a medical model—rather than a social model—perspective of disability (Migliarini, Stinson 2020), the dual identification of many migrant 640

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students as ‘English learner’ and ‘student with disability’ is rhetorically framed as a site of complication, especially when it comes to the allocation of resources and services for students. That is, for many migrant students, the educational label of ‘English learner’—in tandem with migratory status—becomes a red flag (McGuire 2016) of underlying socially constructed disability or deficiency in need of surveillance, to the detriment of their actual social needs and well-being. Data from the US qualitative study presented in this chapter were collected from 2020 to 2021 and are part of a larger corpus of data from a study focused on the needs and experiences of 15 community-based educators, most of whom identify as refugees or migrants. The study took place in Upstate New York, where several mid-sized, post-industrial urban areas have been re-established in the last 20 years as centres for primary and secondary migration (Center for Immigration Studies 2021; Migration Policy Institute 2007). Data collection and analysis followed a constructivist-grounded theory approach (Charmaz 2014). The study included individual semistructured interviews with disabled children’s family members and community-based educators as well as 70 hours of ethnographic observations (Emmerson et al. 2011) at multiple refugee-founded and refugee-operated community-based education programs for migrant youth and families predominantly from African, South Asian, and East Asian countries. All participant and place names in the data presented here are pseudonyms. Much like the Italian study, the primary theme emerging from the US data is systemic lack of intersectional support and services for disabled migrant children and youth. Unlike Italy, however, educational policy implementation is fragmented and varied due to the fluctuating levels of state and local control of public schooling and educational resources (Migliarini et al. 2019). Due to a lack of shared language, principles, and practices for addressing disability rights as afforded by DisCrit and the social model of disability, migrant children are subjected to educational and medical incongruities at the intersections of ableism, linguicism, racism, and xenophobia. Dhyansh, a Nepali man who is a former teaching assistant in the Salt Springs City School District and current community-based educator and interpreter, explains: If the school districts and parents do not align together, go side by side with the doctors, with the community members, with the educators, with, like, a psychologist or PhDs, or whatever thing, they cannot make children learn the right way. They have to partner with so many different disciplines so that they get going, you know. (Interview_Dhyansh) Dhyansh highlights the disconnect between migrant communities and the school officials, healthcare professionals, and other ‘experts’ (e.g. PhDs) who screen, identify, and ostensibly support migrant students labelled as ‘English learners’ and/or ‘students with disabilities.’ In his view as a former public school employee, community-based educator, and parent of a disabled migrant child, children cannot ‘learn the right way’ 641

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without a collective effort towards. However, this collective effort requires consensus-building focused on conceptualising the child’s disability, the family’s and community’s beliefs, practices, and aspirations (e.g., cultural identity), and the medical and educational resources available to adequately support the child and their teachers. Dhyansh’s perspective follows DisCrit Tenet 4, which calls for the privileging of historically marginalised voices. In another example, Maura, a director of interpreter services at an NGO serving ‘people with sensory loss’ (Interview_Maura_4162021), remarks: [T]hese relocation entities, the resettlement programs, did not educate the Deaf New Americans coming over about the depth services in this area. Interesting, because there’s a dependency on hearing family members to know what’s best for Deaf people. (Interview_Maura_4162021) In this excerpt, Maura points to two major issues in the provision of disability and educational services for refugees and migrants in Upstate New York. First, that NGO employees do not connect deaf migrants to the vital disability, language, and educational services to which they are entitled. Second, NGO employees are not aware of—nor do they acknowledge—the ways disabled and, in particular, deaf migrants are uniquely multiply marginalised. In another example, Ranjana, a young deaf woman who works as an advocate and interpreter for Nepali Sign Language and American Sign Language, describes how her deafness was illegible to NGO and public school professionals when she arrived in Upstate New York: When I got here, there was [sic] no services for the Deaf when I moved here in the Salt Springs Cityarea. At that time, I was unaware of what was available. And I was put into English as a second language class. And they wanted to evaluate my level of English, I guess. And they had some kind of tasks. And I remember standing in a long line, and the hearing people were going and then it was my turn in line. I stood there, I was told to stand there, and they told me to speak. And I said, ‘I don’t even understand what you’re saying, I’m Deaf.’ And so that was their first awareness, and they pulled me aside. And they didn’t check first to find out if the person was Deaf and what kind of accommodations they need and how to communicate effectively. It was just automatically assumed and judged that I would be able to speak. (Interview_Ranjana_772021) Ranjana’s experience illustrates how NGO and public school employees lack a nuanced understanding of the relationships between impairment and disability. The officials at the public school and local NGOs supporting refugee resettlement where Ranjana sought services unquestioningly placed her in an Englishlanguage class if her only need as a refugee was to learn how to speak. Their 642

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narrow conceptualisation of what it means to be a ‘refugee’ was not just xenophobic, racist, and linguicist; their assumption that Ranjana ‘would be able to speak’ underscores how ableism circulates together with racism, xenophobia, and lingucism to construct the category of ‘refugee’ or ‘migrant’ and, in US public schools, ‘English learner.’ Between Maura’s and Ranjana’s testimonies, it is clear that NGO and public school professionals are not equipped to support disabled migrant children, youth, or other family members who are subjugated by systemic, cultural, or familial practices rooted in ableism. In other words, the migrant children’s and youth’s disability and impairments are, in many cases, illegible to these service providers because they lack an intersectional and ontological understanding of disability. Further, these data affirm how educational policies and other service delivery policies and practices must be supported by all DisCrit’s tenets, but especially by Tenet 3. Building on the social model of disability, Tenet 3 addresses how social constructions of disability—in this case, the narrow conceptualisation of disability as an externally visible category mutually exclusive to the category of refugee and, therefore, impossible to be experienced simultaneously—have material consequences. In the cases presented here, the consequences emerge as the invisibilising of disability cultural identity, autonomy, and appropriate educational, disability, and language services. Further, NGO and public school professionals operate within policy contexts which do not critically address intersectional or ontological models of disability, race, migratory status, and language. As such, these policies narrowly focus on English language acquisition and expeditious immersion into Western cultural learning experiences for the purpose of assimilation. Ironically, as DisCrit Tenet 5 affirms, the mechanisms of this system, which hinge on the surveillance and categorisation of deficits and difference, are rooted in traditional special education and steeped in the medical model of disability.

Disability as a Category of Human Experience Most international policies on the rights of people with disabilities affirm that disability is caused by lack of civic participation and exclusion from active citizenship (CRC 1989; CRPD 2006). The development of the disability rights framework, articulated within the aforementioned documents, has been of strategic importance for the international recognition of disability as a moral category of a human status and the removal of the consistent representation of the ‘other’. This framework ensures that disability is explicitly named and recognised as a category of human experience (Kayess and French 2008). In this chapter, we have explored ways in which national jurisdictions distribute children’s rights according to citizenship, race, and migratory status. Focusing on the Italian and US contexts and drawing on the tenets of DisCrit, we showed how disability rights policies have largely failed to address the experiences of children living at the intersections of multiple forms of oppression. Most of the service provisions available to disabled refugee children in both contexts focus on one identity marker only, with professionals not having 643

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training in how to provide disability and language learning services at the same time. This significantly undermines the enjoyment of fundamental rights, as established by the CRPD and the CRC. This chapter provides concrete examples of the ways in which students’ needs are siloed: if they are in need of special education and language acquisition supports, they—by proxy of the system—are afforded one or the other, not both. Evidence for practices that, in reality, harm or further oppress these students is demonstrated in professionals’ conceptualisations of disability and inclusion and perceptions of the services provided for these students.

Conclusion The persistent lack of intersectional approach within educational institutions and migrant organisations to address the inclusion of disabled forced migrant youth in both contexts pushes us to make different recommendations to educational stakeholders. The current system of refugee youth reception and inclusion is urgently required to change in more inclusive terms, to enable them to have more in-depth knowledge of the host society and to render intelligible their educational and social expectations. A more solid network should be built between refugee agencies and professionals operating within them, one that would reduce the distance with local schools and educational and social institutions. Only by expanding and ameliorating the communication between agencies and between professionals would it be possible to have inclusive reception practices. Teachers and school professionals should be offered the possibility of having preservice and in-service training, especially if interacting with forced migrant children with disabilities. The training should be focused on an intersectional anti-racist discourse whereby race relations, White supremacy, rights and privilege, and the colonial and neo-colonial legacies of current migration influxes are openly debated among professionals. Mainstreaming forced migrant children by labelling them as having special educational needs should not be considered as a strategy to offer them quality education and, therefore, to recognise their rights. Professionals operating in refugee agencies and not only teachers and educators in schools should consider adopting a Disability Critical Race Theory perspective to actively contribute in stopping the production of educational inequalities of ‘diverse’ students. Within this perspective, much more attention should be given to the kind of support offered to these students rather than to their ‘deficits’. Finally, a system should be implemented to track the participation and educational progress of all students, at individual level, in all sectors of education, in such a way that the data can be disaggregated in relation to specific groups, in terms of ‘race’/ ethnicity, gender, and disability. These data should be used to explore patterns of educational progress and to identify both enabling and constraining factors. They would also allow better exploration of the impact of initiatives, such as the implementation of an inclusive model of education based on DisCrit, introduced to combat educational disadvantage. 644

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DisCrit stems from the intellectual tradition of Critical Race Theory (CRT), and Disability Studies (DS). DisCrit recognises how ability and race are interconnected and influence what constitutes the norm. That is, people are compared to a desired standard (e.g., white, male, nondisabled, straight, middle class). Those who do not meet these requirements are labelled as abnormal and often constructed as ‘disabled students’. The seven tenets of DisCrit are: 1 2 3 4 5 6 7

DisCrit focuses on ways that racism and ableism circulate interdependently. DisCrit values multidimensional identities. DisCrit emphasises social constructions of race and ability. DisCrit privileges the voices of marginalised populations. DisCrit considers legal and historical aspects of dis/ability and race. DisCrit recognises whiteness and ability as property. DisCrit requires activism.

Each of these tenets intends to reject practices and institutions that attempt to construct disability based on differences from normative cultural standards. DisCrit exposes the fault lines in the ableist and deficit-oriented perspectives of disability—naming the social construction of disability to illustrate the multiple dimensions of disability, and disability’s interconnections with race and other socially constructed identities (e.g., class, gender, and sexual diversity). DisCrit highlights the various forms of oppression that intersect in the daily lives of Black and Brown students, as historically multiply marginalised groups, and how they navigate educational and social institutions with savvy and ingenuity.

References Abberley, P. 1987. The concept of oppression and the development of a social theory of disability. Disability, Handicap and Society 2(1), pp. 5–19. Ahmed, S. 2014. Cultural politics of emotion. Edinburgh: Edinburgh University Press. Annamma, S. A. 2018. The pedagogy of pathologization: Dis/abled girls of color in the school-prison nexus. New York: Routledge. Annamma, S. A., Connor, D. and Ferri, B. 2013. Dis/Ability critical race studies (DisCrit): Theorizing at the intersections of race and dis/ability. Race Ethnicity and Education 16(1), pp. 1–31. Annamma, S. A. and Morrison, D. 2018. Identifying dysfunctional education ecologies: A DisCrit analysis of bias in the classroom. Equity and Excellence in Education 51(2), pp. 114–131. Artiles, A. J. 2013. Untangling the racialization of disabilities: An intersectionality critique across disability models. Du Bois Review: Social Science Research on Race 10(2), pp. 329–347. Bell, C. M. 2006. Introducing white disability studies: A modest proposal. In L. J. Davis (ed.), The disability studies reader. 2nd edition. Routledge, pp. 275–282. Bell, C. M. 2011. Introduction: Doing representational detective work. In C. Bell (ed.), Blackness and disability: Critical examinations and cultural interventions, vol. 21. Berlin: Lit Verlag, pp. 1–8.

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Valentina Migliarini and Chelsea Stinson Bell, D. 1987. And we are not saved: The elusive quest for racial justice. New York: Basic Books. Blanchett, W. J. 2006. Disproportionate representations of African Americans in special education: Acknowledging the role of white privilege and racism. Remedial and Special Education 35(6), pp. 24–28. Bocci, F. 2016. I protagonisti dell’inclusione [The protagonists of inclusion]. In F. Bocci and A. Morganti (eds.), Didattica inclusiva per la scuola primaria. GiuntiEdu. Center for Immigration Studies. 2021. Map: Sanctuary cities, counties, and states. [online] [Accessed on 14 March 2022] Available from: https://cis.org/Map-Sanctuary-CitiesCounties-and-States. Charmaz, K. 2014. Constructing grounded theory: A practical guide through qualitative analysis. 2nd edition. New York: Sage Publications. Cobigo, V. and Stuart, H. 2010. Social inclusion and mental health, Current Opinion in Psychiatry 23. Committee on the Rights of Persons with Disabilities (CRPD) (2014). General comment No. 1. [online] [Accessed on 14 March 2022] Available from: https://documents-dds-ny. un.org/ Connor, D., Collins, K. M. and Ferri, B. 2015. Dangerous assumptions and unspoken limitations: A disability studies in education response to Morgan, Farkas, Hillemeier, Mattison, Maczuga, Li, and Cook. Multiple Voices for Ethnically Diverse Exceptional Learners 16(1), pp. 4–16. Connor, D. J. 2008. Not so strange bedfellows: The promise of disability studies and critical race theory. In S. L. Gabel and S. Danforth (eds.), Disability and the politics of education: An internal reader. London: Peter Lang, pp. 451–476. Convention on the Rights of Persons with Disabilities and Optional Protocol. 2006. [online] [Accessed on 14 March 2022] Available from: www.un.org/disabilities/documents/convention/convoptprot-e.pdf Convention on the Rights of the Child. 1989. [online]. [Accessed on December 2022]. Available from: https://www.unicef.org.uk/what-we-do/un-convention-child-rights/ Douzinas, C. 2000. The end of human rights: Critical legal through at the fin-de-siecle. London: Hart Publishing. Emmerson, R. E., Fretz, R. I. and Shaw, L. L. 2011. Writing ethnographic field notes. 2nd edition. Chicago: University of Chicago Press. Goodley, D. 2001. Learning difficulties, The social model of disability and impairment: Challenging epistemologies. Disability and Society 16(2), pp. 207–231. Hodkinson, A. 2016. International perspectives on SEN and inclusive education. Key Issues in Special Educations and Inclusion. 2nd edition. London: Sage Publishing. Kangas, S. E. N. 2017. That’s where the rubber meets the road: The intersection of special education and dual language education. Teachers College Record 119(7), pp. 1–36. Kayess, R. and French, P. 2008. Out of the darkness into light? Introducing the convention on the rights of persons with disabilities. Human Rights Law Review 8(1), pp. 1–34. Lawson, A., Beckett, A. E. 2020. The social and human rights models of disability: Towards a complementarity thesis. The International Journal of Human Rights 25(2), pp. 348–379. McGuire, A. 2016. Raising the red flags of autism: Advocacy’s call to arms. In War on autism: On the cultural logic of normative violence. University of Michigan Press, pp. 67–102. Meekosha, H. and Soldatic, K. 2011. Human rights and the global south: The case of disability, Third World Quarterly 32(8), pp. 1383–1397. Migliarini, V. 2017. Subjectivation, agency and the schooling of raced and dis/abled asylumseeking children in the Italian context, Intercultural Education 28(2), pp. 182–195. Migliarini, V. 2018. Colour-evasiveness and racism without race: The disablement of asylum-seeking children at the edge of fortress Europe. Race Ethnicity and Education 21(4), pp.438–457. Migliarini, V. and Stinson, C. 2020. Inclusive education in the (new) era of antiimmigration policy: Enacting equity for disabled English language learners. International Journal of Qualitative Studies in Education 34(1), pp. 72–88.

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Who is Worthy of Rights? Migliarini, V., Stinson, C. D. and Alessio, S. 2019. Senitizing migrant children in inclusive settings: Exploring the impact of the salamanca statement thinking in Italy and the United States. International Journal of Inclusive Education 23(7–8), pp. 754–767. Migliarini, V., Stinson, C. D. and Hernandez- Saca, D. I. 2022, It feels like living in a limbo: Exploring the limits of inclusion for children living at the global affective intersections of dis/ability, language, and migration in Italy and the United States. In Annamma, S. A., Ferri, B. & Connor, D (eds.), DisCrit Expanded: Reverberations, Ruptures, and Inquiries. Teachers College Press, pp. 62–80. Migration Policy Institute. 2018. English learners in New York State: Demographics, outcomes, and state accountability policies [Fact Sheet]. [Accessed on 10 April 2021] Available from: www.migrationpolicy.org/research/english-learners-demographics-outcomesstate-accountability-policies Miles, S. and Singal, N. 2010. The education for all and inclusive education debate: Conflict, contradiction or opportunity? International Journal of Inclusive Education 14(1), pp. 1–15. National Center for Education Statistics [NCES]. 2020. Characteristics of public school teachers [Data Report]. [online] [Accessed on 1 September 2021] Available from: https://nces. ed.gov/programs/coe/indicator_clr.asp Oliver, M. 1990. The politics of disablement. London: Springer. Oliver, M. 1996. Fundamental principles of disability. In Understanding disability: From theory to practice. St. Martin’s Press. pp. 19–29 Oliver, M. 2013. The social model of disability: Thirty years on. Disability and Society 28(7), pp. 1024–1026. Picower, B. 2009. The unexamined whiteness of teaching: How white teachers maintain and enact dominant racial ideologies. Race Ethnicity and Education 12(2), pp. 197–215. Stinson, C., Migliarini, V. (2022). ‘[R]ace had never been an issue’: Examining white supremacy in English language teaching. British Journal of Sociology of Education, https://doi.org/10 .1080/01425692.2022.2145933 UNESCO. 1994. The salamanca statement and framework for action on special needs education, Salamanca: UNESCO. [online] [Accessed on 14 March 2022] Available from: www. european-agency.org/sites/default/files/salamanca-statement-and-framework.pdf UNESCO. 2000. The dakar framework for action: Education for all: Meeting our collective commitments (including six regional frameworks for action). Dakar: UNESCO. Wetherell, M. 2012. Affect and emotion: A new social science understanding. New York: Sage. Youdell, D. 2006. Impossible bodies, impossible selves: Exclusions and student subjectivities. New York: Springer.

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36 THE RIGHT TO SAFETY Promoting the Authority of Disabled Children to Tackle Rights Resistance Sally Robinson and Jan Idle

In the face of multiple inquiries into the abuse and neglect of children and of disabled people, an understandable emphasis has grown on preventing and responding to harm. This is, of course, vital. However, the absence of abuse does not constitute safety, and there is a pressing need to better understand the necessary conditions for disabled children and young people to enjoy lives that are both safe and flourishing. While statements of principles about the right of children to be safe and to protection abound, at an implementation level, there is far less evidence of disabled children’s perspectives and priorities influencing practice. Promoting authority in this sensitive area opens a series of questions: How are issues of power acknowledged and (imperfectly) reconciled? How are children with high support needs able to articulate their place in these debates and be heard? How are families and other supporters (multiply) aligned? What are the intersections with paid support workers, organisations, and systems? Disabled children and young people themselves have responded to many of these questions, articulating through words and actions how they prioritise safety in their daily lives and what they think needs to change to promote personal safety in the everyday, in the services they use, in policy, and in communities. In this chapter, we highlight some of their contributions through co-produced research about personal safety and abuse prevention. The chapter is foregrounded with a discussion of the way that the rights of disabled children are multiply framed within human rights and wider conceptions of childhood. This provides a context to situate the main body of the chapter. Here, we present children and young people’s priorities around feeling and being safe. The final section of the chapter considers how these perspectives and priorities shed new light on persistent questions about making life safer with and for disabled children and young people. 648

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Framings of Childhood, Safety, and the ‘Disabled Child’ in Human Rights Contexts Disabled children and young people occupy (and are subject to) complex and overlapping sets of legal, policy, and operational rules and systems which set out their rights. These come into play at international, national, and local levels and relate to different parts of children’s lives—here, we are particularly interested in their safety and disability. While UN conventions underpin how we might understand or theorise the rights of children, the perception of childhood and the position of children within societies have long influenced how rights are performed or practised. Historically, in the minority world, children have been viewed from a paternalistic standpoint as not-quite-adults, or lesser form of adult (incompetent or incapable), in need of protection and safeguarding. For disabled children, there are clear limitations to this framing. Alongside this sits a human rights approach to disability which aims to place the person at the centre of all decisions about them, with a focus on equality; expose the inequality of power relationships; and locate issues or problems in society, moving away from pathologising and medicalising discourses (Ayling 2018). In the opening section of this chapter, we discuss the international rights framing of disabled children’s rights, barriers to implementation, and alternative conceptualisations to widen our view of what constitutes agency and authority in children and childhood.

International Rights and Disabled Children’s Safety The rights of disabled children and young people are articulated through two United Nations Conventions, the UN Convention on the Rights of the Child (1989) (CRC) and the UN Convention of the Rights of Persons with Disability (2006) (CRPD). The CRC situates children as participants and citizens, bearers of rights and agency, participation and citizenship, and simultaneously embodying aspects of vulnerability, and the CRPD outlines rights, recognition, and freedoms for disabled people, including disabled children. State signatories to both these UN Conventions are required to position children’s rights through agency and best interests at the foundation of government strategies and policies, and this includes disabled children. The CRC and CRPD outline clearly that disabled children and young people have rights to equality and recognition. However, activating these human rights, through government legislation, organisational structures, and community attitudes, remains a key challenge, and disabled people, including children and young people, face ongoing and continued discrimination and barriers to participating in society. Barriers to participation across life domains of education, health, housing, and justice mean disabled people must advocate for their rights on a daily basis. Some key positive developments in implementing the rights of disabled people have been shaped through advocates and advocacy groups, such as progress in many countries in universal design, inclusive education, and access to information. 649

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Since the ratification of the UN Conventions, there has been increased concern about children, including disabled children and issues of risk and safety. This is not without cause, and despite a lack of comprehensive data across many countries, it is clear that disabled children and young people experience higher rates of abuse, violence, neglect, and exploitation than their non-disabled counterparts (Jones et al. 2012, Stalker and McArthur 2012, Llewellyn, Wayland and Marsh 2016; Robinson 2015). Further, it is well demonstrated that the rates of harm experienced by disabled children are likely under-reported for a range of reasons, including barriers to children reporting, the lack of credibility accorded to children’s accounts of abuse, and systemic problems, which drive a lack of capacity to respond to concerns (Flynn and McGregor 2017, Flynn 2020, Robinson and Graham 2020). Abuse is, of course, more complicated than small incidents or actions of one person on another and also includes systematic and structural social, cultural, and economic forms of abuse through exclusion or exploitation among others, making it more than a matter of counting incidents of violence or neglect against children. For disabled people, abuse occurs in the context of being ‘othered’ through community attitudes and structural conditions of exclusion, isolation, and oppression (Flynn 2020, Clapton 2009, Goodley 2013). The CRC has attracted criticism for operating according to a universalising framework of what constitutes a child and childhood (Sandland 2017). This approach foregrounds an individual-based child rights focus and highlights conflicts between the child’s views and best interests. This ‘essentialised’ child is seen as a bias within the convention founded on a narrow, normative, individualistic, and Western paradigm that privileges minority world perspectives (Mayall 2013; Tisdall and Punch 2012) and ignores different experiences of childhood (Peleg 2018). This framing marginalises other children and other childhoods, including but not limited to those with disability, refugee children, street children, children from the Global South, and working children (Sarmento, Marchi, and Trevisan 2018). In discussing the limitations of such framing, scholars argue, these ‘othered’ children are, in many cases, not afforded the rights of their peers who do not have disability. The focus of the rights agenda on the individual child obscures issues of intergenerational responsibility, localism, interdependencies, and reciprocity (Sarmento et al. 2018). The issue of the child’s best interests is problematised, particularly in regard to children’s right to express their views, and those views being afforded due weight, limited by their age and maturity (CRC Article 12). The child’s views and best interests may be perceived by others—adults or the state—as being in conflict. Additionally, age does not account for the diversity of childhoods and denies differences in experience, identity, ‘poverty, ethnicity, race, religion, gender, sexuality and social background’ (Peleg 2018, p. 328).

The Emplacement of Disabled Children in Policy Despite their over-representation, broad measures to proactively counter the scale of violence, abuse, and neglect experienced by children rarely consider disabled children. In Australia, for example (where our research took place), the National 650

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Framework for Protecting Australia’s Children 2009–2020 sets out six outcomes to ensure safety and well-being, prevention of neglect and abuse, for children and young people. The focus on, or prioritising of, safety has failed to recognise the agency and authority of disabled young people, demonstrated as key factors of recognition which are critical in activating rights (Hanson and Peleg 2020). It is more common for policy to emphasise responses to harm already experienced or to manage service conditions to minimise the likelihood of harm. This focus drives culture and practice focused on risk management and a view of children with disability as inherently vulnerable (Brown, Ecclestone and Emmel 2017). This emphasis on vulnerability and risk in policy settings reinforces fixed societal attitudes of normative constructions of childhood and fails to engage with the rights, capacities, and agency of disabled people. Policy focused on the ‘inherent risks’ associated within the individual have not addressed or alleviated vulnerability and ensured safety and have not adequately considered how environmental or situational vulnerability (Hall 2018, Hollomotz 2011) might be more significant in understanding the importance of context on safety. Rather, they have placed responsibility for such vulnerability with the child or young person and, in so doing, obscured rights. This view sees disability located as a ‘within-child deficit’ (Curran and Runswick-Cole 2014, p. 1621). Strategies for facilitating and recognising capacity through a rights agenda for children and young people are frequently undervalued and overlooked. Childhood sociology scholars argue that towards the end of the 20th century, this shifted somewhat, and children and young people have been increasingly viewed as competent social actors in their own right, ‘as beings and not becomings’ (Holloway and Valentine 2000; James, Jenks and Prout 1998). More recently, they have been viewed as both—as beings and becomings (Uprichard 2008). For disabled children and young people, however, prevalent ableist assumptions of lack and incapacity continue to frame how they are perceived, and their childhoods have been largely overlooked and remain relatively invisible within historical childhood studies, unless seen through the deficit lens of ‘tragic children and childhoods in welfare institutions’ (Curran and Runswick-Cole 2014, p. 1618). Although the childhood studies discourse has broadened the views of childhood and recognises diversity in gender, age, and ethnicity, it has not fully embraced the disabled child and their lived experience, and they remain outside as an ‘other’ (Flynn 2020). Views of disability reflect the ‘not-quite-adult lens’ previously assigned to childhood, and disabled children and young people are simultaneously seen through the lenses of childhood and disability, as not-adult and not-abled. Normative discourses of childhood operationalised through the CRC are based on discriminatory systems based on age, and here for disabled children, the social model of disability ‘bites twice’ (Sandland 2017, p. 97). The critique of the ‘universal child’ within the CRC draws attention to the value of considering children and childhood through an intersectional lens, which can ‘help avoid assumptions about childhood, and what form child’s rights take’, and ‘reflect children’s identities and positionalities in their diverse societies as fundamentally different’ (Hanson and Peleg 2020, p. 31). Further, 651

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the tensions between the CRC and CRPD are situated around issues of the child’s capacity, agency, and ‘best interests’ in the lives of disabled children. Sandland (2017, p. 98) argues the ‘social, and legal, construction of childhood itself ’ (italics in original) is a significant barrier to the rights of disabled children. Young and Quibell’s (2000) pivotal work on the failure of rights to ensure justice for people with intellectual disabilities is important here as it acknowledges the limits of relying on rights frameworks to resolve the thorny problems many disabled people face. The essential limitation they point out is that for rights to be enforced, participatory involvement is needed in the legal frameworks from which people with disability are generally excluded. As they write: ‘[T]o empower oneself, one requires rights, but to exercise one’s rights, one has to be in an empowered position’ (Young and Quibell 2000, p. 753). To resolve this dilemma, they call not for a rejection of rights but for a joint focus on building interpersonal and cultural understanding through sharing, and receiving, narratives of experiences different to our own.

Alternative Framing to Privilege Disabled Children’s Agency and Authority Disabled children’s childhood studies open alternative ways of thinking about the rights of children with disability. Emerging from childhood studies and critical disability studies, it activates a mutual emphasis on recognising and analysing the tensions between agency, participation, and social and political rights. This approach emerges through an expressed need identified by disabled children, developed through their views and voices, and simultaneously challenges the trope of the ‘tragic’ disabled child and the normative child (Curran and Runswick-Cole 2014). Outlining an approach to childhood that sets aside normative constructions of childhood as developmentally or age-defined capacity and includes all children and all childhoods, disabled children’s childhood studies are a productive starting point for understanding and engaging with human rights instruments and cultures. It brings these young people out from the shadow of tragic, vulnerable childhoods and into focus as active agents in their own lives. Through recognising and responding to the way(s) that rights are produced together and through children and young people’s agency and participation, disabled children’s childhood studies are also practical and helpful in forming foundations of policy-based solutions for the prevention of violence and exploitation in the lives of disabled young people. It is a helpful frame ‘in thinking about all children’s lives (disabled and non-disabled) in positive and productive ways’ (Curran and Runswick-Cole 2014, p. 1627). It is in this context that recent research extends and deepens understandings of children and young people’s participation, moving beyond the performative and focusing more closely on the relational nature of contribution and inclusion (Flynn 2020; Robinson et al. 2020). Recognising the significance of children and young people’s everyday experiences and including these as acts of participation and as relational spaces draw disabled children into conversations about their lives, including those who may need a concrete frame of reference in order to engage in abstract 652

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topics such as safety. Prioritising the perspectives of disabled children and young people in context may also recognise and respond to rights discourses which are at times in contestation with each other, such as child protection (Flynn and McGregor 2017), ethics of care (McKenzie and Macleod 2012), and agency (Feder Kittay 2001; Sloper and Beresford 2014).

Young People’s Priorities Around Feeling Safe and Being Safe In this part of the chapter, we follow two pathways to frame a rights-based discourse on personal safety and abuse prevention for disabled children and young people. The first considers how children and young people themselves understand and embody ideas around personal safety in their everyday lives. The second builds directly from this and concerns the priorities of children and young people about promoting personal safety—both for themselves and for their peers. To explore these pathways, we draw on three research projects we have co-produced over the past five years with disabled children and young people. The Safety Project explored the perspectives of disabled young people, their supporters, and their families about feeling safe and developing strategies to stay safe (Robinson et al. 2017; 2018). The Feeling Safe, Being Safe study explored what helps disabled children and young people with high support needs to feel and be safe in institutional settings, such as disability services, schools, and therapy services (Robinson and Graham 2020; 2019). Conducted for the Australian Royal Commission into Institutional Responses to Child Sexual Abuse, this research included young people with a wide range of capabilities, all of whom needed support with most activities of daily living. The Safe at School? study explored experiences of safety and harm with cognitively disabled students in and around school (Robinson 2018). All projects were conducted with the guidance of university ethics approval. Further detail on funding and methodology for each project is provided in the endnotes and text box at the end of the chapter. As this chapter brings together the results from three studies, we do not describe the methods in detail here. Interested readers can find more about methodology and methods in related papers (Robinson 2018: Robinson and Graham 2020, 2019; Robinson et al. 2017). A commitment to co-production with disabled children and young people sits underneath the work methodologically, and the involvement of young people as co-researchers and advisors strengthened the projects immeasurably. Across the projects, disabled young people were embedded in roles advising on research design, ethics, approaches to interviews and associated activities, adapted data analysis, contributing to report writing and in dissemination activities. While young people were included in various stages of the projects, they were not involved as interviewers. Many of the children and young people we interviewed disclosed experiences of harm, and it was difficult to prepare for this ethical risk for co-researchers. There were multiple ethical tensions in doing this sensitive work with young people who were personally as well as professionally involved in the topics. Few 653

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studies with disabled children about safeguarding issues in their lives have taken a co-produced approach (see Brady and Franklin 2019 for an excellent discussion of the ethical issues in their work). We needed long lead-in times to build trusting relationships to be able to safely hold sensitive conversations with individual co-researchers and advisory groups that didn’t make them feel too uncomfortable. As we went along, an iterative approach to explaining the project activities was important so that young people could choose meaningfully about which parts they wanted to be involved in and options so that there was other (less confronting) work available. We needed to develop accessible versions of information at every stage. We needed strong support structures to ensure that young people had access to additional support if, and when, they found any of the work distressing. This all required resourcing, which was challenging to balance within the available project funds. Across this body of work, some overarching themes have developed which send important signals about the ways in which disabled children and young people understand and embody safety and the priorities they identify to preserve personal safety and regenerate it when it is damaged or lost. These are discussed next.

How Children and Young People Understand and Embody Safety In our work together, disabled children and young people have collectively developed some shared understanding about what it means to be and feel safe. In the Safety Project, young people built a model of interpersonal safety, derived from the views of 68 young people who participated in qualitative research interviews (Robinson et al. 2017). The four core domains of being physically safe, being emotionally safe, feeling capable, and having access needs met were about the ways young people navigated their everyday relationships to build and maintain a sense of safety with both people

Figure 36.1

Young people’s interpersonal safety model.

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they knew and in wider social interactions. Most young people identified that, in order for them to feel safe, all four domains needed to be considered. For me safety is also about emotional safety as well. So, feeling that where you are at the particular point. So not just physical safety like you’re not going to trip over or not going to burn yourself but also that you can look around and think well this is where I am either meant to be or I feel happy here? (Lina) Many began talking about safety by discussing the physical elements, such as keeping doors locked or ways that they used physical space to minimise the risk of encountering bullies. The most frequently discussed domain was being emotionally safe, where young people related the importance of feeling respected, well-known, and well-met by the people who were important to them. Feeling capable was about having authority and influence, not being independent or autonomous. Finally, having access needs met included physical access, but also a strong emphasis on emotional and social access—feeling that you are welcome in a space and physical and social relations do not need to be adjusted in order for you to be there. I think safety is where I have access to everything . . . you know I imagine . . . somewhere that would be great, where safe equals access, where I’m not missing out on anything. (Louis) The young people identified domains in this project closely related to those in our earlier research. These centred on trust in relationships, having a level of autonomy and influence, being well-met when raising problems, and the importance of ‘zerotolerance’ cultures where incidents of harm or abuse were immediately addressed (see Robinson 2018 for further detail). For children and young people with higher support needs, many related safety to physical actions they could take themselves (such as staying away from busy roads) but also to being with people whom they felt good about, not being hurt, and following rules (both written and unwritten) (see Robinson and Graham 2020). I would tell Anna [service coordinator] if I wasn’t safe. She listens to me. (Robert) Almost everyone involved in our research has been able to indicate things that are important to them about their personal safety, through conversations, pictorial mapping, photo elicitation, walk-along interviews, and activity-based adapted methods. Disabled young people have acute insight into ideas about what makes them feel safe and unsafe. For example, children with high support needs using activity-based methods shared how the safe people in their lives mattered in building a sense of safety in their daily lives and how physical harms they experienced disrupted their sense of safety. In the image that follows, along with choosing images to represent known 655

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Figure 36.2

My safe places.

people and places where he felt safe, the young person drew a picture of the time he had to go to hospital to have stitches after being pushed by another young person. However, when it comes to steering a safe path through these relationships, it is far more complex. Many of the issues raised by young people are contested and difficult areas to navigate, particularly for children and young people who are reliant on others for support with communication or negotiating daily activities and relationships. It was hard for many children and young people to get a sense of how effective their strategies were, because they had limited opportunities to test them out in safe ways. A lack of access to informal social activities affected opportunities for young people to develop knowledge and understanding about how to navigate a range of relational issues with safety connections, such as peer interactions and relationships, social media, and the social complexities of adolescence. A number of young people in our studies commented on the ways they felt they missed out on opportunities to learn about social cues, peer relationships, and how to practise social skills in ‘low-stakes’ environments with friends. We contact together on my Facebook Message. Some friends send me rude [messages] that is not good to look at. It’s really hard to have good friends . . . I don’t like Wendy’s attitude to say f-word. It’s an ugly word. (Mick) Several children and young people talked about not knowing how to respond to potential harm. Their lack of confidence meant that they actively avoided situations 656

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where they felt out of their depth, including everyday situations, such as moving away from someone they did not know at the bus stop, crossing the road to avoid someone coming along the street in their country town, and dressing in nondescript ways to avoid attention. These strategies may have avoided confrontation at that time, but they also inadvertently increased risk to young people of predatory attention as they increased their social isolation. A core tension young people described is their reliance on trusting relationships for a sense of safety. It is clear across our programme of research, and others, that sustaining solid, foundational relationships with a range of people supported young people’s safety. These core relationships helped young people feel cared for and secure and also develop confidence that they can better respond to problems that may occur in their lives. This matters for all children and young people because of their life stage and points to the importance of preventing harm from blighting their lives and shaping their emerging adulthood. In many ways, this is no different for disabled children and young people. However, the effects of living with greater social isolation, more engagement with services, and more mediated relationships with paid workers mean that focused support may be needed to help disabled young people form and maintain relationships they can rely on, for adults in those relationships to listen when problems arise, and to act when potential abuse occurs. For example, over four interviews, Elizabeth shared through sign, pictures, and communication support how kids in school bullied her and poked her with sticks. She told the teachers, and they gave those kids time out, but it didn’t stop them from hurting her next time. More recently, at respite, she said she has been bullied by other people staying there. She told the manager, who told her to ignore them and do something else. This does not stop the bullies next time either. Young people in our research talked about how important their known, trusted supporters were for their sense of safety, but also about the importance of having access to people beyond their close networks for advice and support where needed. These people were often described as teachers, advocates, or service managers—but many young people did not have a ‘go-to’ person like this in their lives. For those who did, access to a trusted advisor increased their sense of agency and authority and helped them feel in control of decisions at sometimes very difficult times and feel more self-determining about their safety. For example, Bianca spoke about several times that her foster family had demonstrated that they ‘had her back’ and how this changed the way she felt: My other placements they don’t quite feel like this place, this place feels like home. So, I wouldn’t call the other places safe. . . . But I got to say this is the safest place I’ve been since I’ve been in care. I know that this family will never let anything happen to me and I know that they’ll stand by me no matter what. The fact that many young people pointed to adults in service or formal roles as trusted advisors aligns in part to the experiences of children and young people more broadly but also reflects their limited social networks. Few talked about the roles played by adults in their social networks, such as family friends, tutors, or sports 657

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coaches. Young people who were more reliant on services had very different experiences and different expectations about what constituted safety. Across all our studies, children and young people talked of a felt expectation to comply with adults’ expectations in services—to ‘go along’ or ‘behave’. A core priority expressed by children and young people in our research was to be listened to, be treated with dignity, and have concerns heard and responded to. They identified many strategies for staying safe and for regaining a sense of safety when something went wrong in their lives—either due to accident or abuse. Collectively, as Figure 36.3 demonstrates, these strategies fall into categories of those that young people feel they can implement themselves, actions that other people can take to help resolve safety problems, strategies that services need to take to address safety issues, and community-level strategies which will help promote young people’s safety. Some children and young people in our research were able to take action to stay safe or regain a sense of safety. Having their strategies received and acknowledged helped them build a sense of agency which supported feelings of resilience and personal safety. It was more common, however, that young people felt a lack of autonomy in managing their safety. They described many experiences where they had asked for help but it was not provided, where they had tried to use safety strategies without success, and many examples of poor responses to complaints. Despite the many ideas that children and young people had about resolving problems with their safety, excluding personal strategies they employed, they were seldom listened to and had little authority in activating these ideas. As Celia’s words in the following illustrate, this made it even harder to build a positive sense of identity as a young adult. I really believe that you have to be strong minded as a disabled person and that you have to choose that overseeing yourself as vulnerable because that’s how everyone else sees us. (Celia)

What Light Do These Perspectives and Priorities Shed on Persistent Questions About Rights Resistance? Children and young people’s perspectives and priorities collectively demonstrate a sense of urgency for change—not only to improve current situations in which they are unsafe, but also to build safer foundations and higher expectations for safe lives. Children and young people have been sharing these messages consistently, with their peers and the adults they trust and through more formal mechanisms, such as consultations and research (for examples, see Brady and Franklin 2019; Children and Young People with Disability Australia 2020; Sloper and Beresford 2014). Many of the things they prioritise are not difficult to enact, which leads to the obvious question: Why is there such resistance to making their lives safer? Although it has been some time since she published her work on broadening understanding of children’s participation based on human rights principles, Laura Lundy’s (2007) model of children’s participation remains aspirational in all four domains for children with disability. Conceptualising Article 12 of the CRC in a 658

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Figure 36.3

Young people’s safety strategies.

new way, the model is intended to focus the attention of decision-makers on four interrelated features of the provision (Lundy 2007, p. 933): • • • •

Space—children must have the opportunity to express their perspective. Voice—children must be facilitated to express their views. Audience—these views and perspectives must be listened to. Influence—these perspectives must be acted upon, as appropriate. 659

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The model has been applied extensively to children’s participation, including to that of disabled children. In research with disabled children, a collective emphasis in understanding participation in less-performative and more social ways and increasing knowledge about its relational contexts is evident (Brady and Franklin 2019; Hummerstone and Parsons 2020; Riddell 2020). For these reasons, we bring the young people’s interpersonal safety model into dialogue with Lundy’s model to frame discussion of the next part of the chapter in the hope that this may shed some new light on the embodied tensions and difficulties that young people describe in having their safety strategies activated. Children and young people emphasised the importance of being able to share and use their knowledge and skills about being, and getting, safe. It mattered to them that their ideas about safety were heard by their peers, by the adults who worked with them, and by policymakers who could make systems change. As the discussion about their strategies shows, many young people had a solid understanding about where their own strategies were effective and where they wanted or needed other people to step in and assist. For many children and young people, however, both space and voice were heavily mediated by the systems they spent most of their time within—predominantly disability services and education. This affected how much influence they had, both interpersonally and over these systems. Some young people noted that there are limits to how effective your own knowledge can be in effecting change in unresponsive systems. For those young people and others who lived service-dominated lives, this lack of authority could also be very constraining at a relational level. For example, some of the children and young people in our research had very little autonomy over their day-to-day decisions and actions. When relying on others for assistance for almost every part of their day, it is extraordinarily difficult for children and young people to manage the sometimes-subtle dynamics of power relations which underpin dissatisfaction, misrecognition, and disrespect. Children and young people in our research reported and demonstrated that they are often reliant on other people to take up their ideas for change and requests for help. If these are not well-received, particularly by adults in authority, most have little influence to take action that makes them safer. For example, children were unable to change the ways they spent time in the school playground at recess and lunchtime despite reporting persistent bullying to teachers. A lack of informal support and networks amplifies this problem, leaving children and young people largely reliant on formal systems and the people working within them. When those people might themselves feel cowed or intimidated by the way systems work, face a lack of effective policy/procedure, or work within negative organisational cultures, then their capacity or willingness to act can be diminished. This leaves disabled children and young people in an invidious situation without supportive adults or advocates. The history of disconnecting inclusion agendas from abuse prevention policy and systems does not make disabled young people’s lives safer. Nowhere is this more dangerous than where we fail to see that an absence of abuse does not constitute a safe life for disabled children and young people. Without building a bridge between harm prevention and belonging and connectedness, we will continue to respond to 660

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harms experienced by children and young people without moving meaningfully to adequately address their causes. Aligning the opportunities that children and young people have for relationships with peers and creating informal opportunities to learn about and enact the ways that children keep themselves safe in intuitive, relational ways are core strategies for promoting safety for all children. They are represented in safety promotion and harm prevention education for all ages. However, disabled children are often absent in these wider public campaigns. Disabled children and young people in our research were abundantly clear that the same concerns drove them—being respected, being known, being heard, and being taken seriously. These need to be heard and addressed in wide-scale respectful relationship and violence prevention campaigns. Although our research was focused on personal safety, the experience of violence and abuse was very much present for many children and young people who took part in our studies, and its impact was evident in their sense of safety, confidence, and capacity to implement strategies to feel and be safe. Many young people described being very unhappy at school and ineffective responses to their experiences of abuse, bullying, and exclusion by people in authority. These experiences had a legacy on how young people felt about friendships, receiving services from new workers, and going into public spaces. The trauma some young people experienced shaped the way they experienced the world. Preventing abuse is not sufficient. A proactive approach to creating a sense of safety is needed for disabled children and young people, who experience high rates of harm. Safety should be planned for in a positive way and start early. Positive planning about safety builds resilience and capability through the life course, can connect harm prevention, belonging, and connectedness, and address wider inclusion aims. This includes starting early in the life course, developing from a strengths base, looking at what is needed to build awareness of rights and confidence to seek support. Alongside this is the importance of education support and developing situational knowledge in children and young people and the people who support them. For the adults who support disabled children and young people, work to create receptiveness is needed at multiple levels—individually, at systems levels, and structurally. These can be connected as strategies—for example, young people suggested that adults should find ways to work out who has fewer informal supports and put more supports in place for those children and young people. These adults should ensure informal supports are well scaffolded, and children and young people have ‘go-to’ people (peers and adults), opportunities to build confidence and to talk about what is going right as well as when things are not going well. This kind of safety work requires building skill in everyone—so there is a shared expectation that if something is not right, it can be talked about and something will be done, and so people and organisations can be held to account. While the importance of connecting protection frameworks for children and people with disability is clear, this is only of use if these frameworks are engaged. These engaged frameworks are critical for children and young people with high and complex needs, who are involved with multiple service systems and providers and often 661

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less able to articulate problems with their safety, particularly when they are of a subtle interpersonal nature. Children and young people speak more about the impacts of chronic, sometimes daily, experiences of harm, and yet systems tend to respond on an incident-by-incident basis. Being harassed and bullied, physically assaulted, threatened, and humiliated were ongoing and chronic forms of harm for some children and young people who participated in our research. They wanted and needed responses from leaders which looked to the cause of this harm to resolve it. On multiple occasions, opportunities to respond early and prevent situations from escalating into more serious violence and abuse were missed, policy frameworks were not used, and learning from incidents was not applied to avoid recurrence. These individual relations are shaped by systemic and cultural conditions that can create a climate which allows or facilitates treatment of disabled children and young people not permissible for other children. Historically, these have been viewed through a welfare or charity lens, where the purpose is to create services to children and young people for social and individual benefit. When viewed from the perspective of children and young people themselves, the impacts of poverty, segregation, isolation, and othering are clearly in view. This can be seen, for example, in young people’s commentary on the cumulative impact of therapies and care completed without asking consent of young people. While of individual good intent, the accumulating damaging effect on a robust sense of bodily integrity was described as profound by several people in our studies and as ‘broken trust radars’. Young disabled people working with Hollomotz (2011) also called this being immunised from your own body. This has dangerous implications for the capacity of young people to recognise abuse and raise concerns. Alongside these more specific actions, governments at local, state, and federal levels can consider access in broader and more creative ways to ensure that the social and emotional access needs of disabled children and young people are met—that people feel expected, welcome, and that they are valued citizens. These are strategies around the design and use of public spaces that take account of contemporary universal access measures which include sensory and neurodivergent accessibility, planning and establishing playgrounds and leisure facilities accessible to all children, setting up cafes and restaurants in the expectation that disabled customers will use them, and enforcing standards so that individuals do not have to complain about poor quality, not only planning for physical access.

Conclusion Promoting and enabling young people’s participation will not only increase their capacity for action on their own behalf but also progressively increase their confidence to act in the future. Championing and supporting the leadership of young people shine a light on their capability, resourcefulness, and energy and open new conversations about safety for disabled children and young people at important life stages. These are very practical strategies, built from the suggestions and priorities of the young people in our research. They activate rights in a very concrete way, particularly 662

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centring on the rights to participation and inclusion, to feel safe, and to be free from violence, abuse, and neglect. Our research team wrote a paper together for service providers about personal safety (Robinson, Speeding, Brewer, Coughlin, and Pathirana 2018). In it, our coresearchers gave some advice based on their experience as disabled young people and researchers. Their advice is quoted here again as the summary for our chapter.

Taking action Two things really stood out to the young people who are part of our research team about this project. 1 2

Promoting personal safety is about more than stopping things from being terrible—it’s about making life good for young people so their adult lives can be great. What really mattered to all of the young people in the research was to be listened to, to be treated with dignity, and to have their concerns listened to and responded to.

Now you have read this, here are some ideas from our team for what you can do to help young people to be safer: • • • • • • •

You can BE that person who can be trusted. Show faith in young people’s ability to do things, even when they might doubt themselves. Find out more about safety and harm so you know how to respond when a young person asks for your help. Make time to sit together, talk, listen. Find a way to help the young person to have their say and make choices about their safety. Help the young people you support to plan a safe place to go if they don’t feel safe. If you find good information about safety, share it! You never know who will be looking on public Facebook pages and Instagram. If you see something, say something. Don’t stay silent about abuse.

Acknowledgements Thank you to the many children and young people who have contributed to our projects with great insight and energy. These can be hard conversations, and we are very grateful for your willingness to share your experiences and aims to build a safer future for other young people. Thanks also to our research team members along the way: our academic and community collaboration teams and our co-researchers Jesse Brewer, Tara Coughlin, and Nimali Pathirana. Finally, we would like to thank and remember the contribution to this work of the late Jaimsie Speeding, our extraordinary and much valued colleague and co-researcher. 663

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References Ayling, P. 2018. Diversity, equality and rights. In A. Boggis (ed.), Dis/abled childhoods? A transdisciplinary approach. Springer International Publishing, pp. 37–55 [online] [Accessed on 10 April 2021] Available from: https://doi.org/10.1007/978-3-319-65175-0_3 Brady, G. and Franklin, A. 2019. Challenging dominant notions of participation and protection through a co-led disabled young researcher study. Journal of Children’s Services 14(3), pp. 174–185. Brown, K., Ecclestone, K. and Emmel, N. 2017. The many faces of vulnerability. Social Policy & Society 16(3), pp. 497–510. Children and Young People with Disability Australia. 2020. National youth disability summit: What young people with disability said: Mental health and wellbeing. Outcomes of the inaugural national youth disability summit. 29 September to 3 October 2020 Melbourne. CYDA. [online] [Accessed on 10 April 2021] Available from: www.cyda.org.au/resources/ details/256/national-youth-disability-summit-what-young-people-with-disability-saidmental-health-and-wellbeing-position-paper Clapton, J. 2009. A transformatory ethic of inclusion: Rupturing concepts of disability and inclusion. Netherlands: Sense Publishers Convention on the Rights of Persons with Disabilities. 2006. [online] [Accessed10 April 2021] Available from: www.un.org/disabilities/documents/convention/convoptprot-e.pdf Convention on the Rights of the child. 1989. [online] [Accessed on 10 April 2021] Available from: www.ohchr.org/en/professionalinterest/pages/crc.aspx Curran, T. and Runswick-Cole, K. 2014. Disabled children’s childhood studies: A distinct approach? Disability & Society 29(10), pp. 1617–1630. Feder Kittay, E. 2001. When caring is just and justice is caring: Justice and mental retardation. Public Culture 13(3), pp. 557–579. Flynn, S. 2020. Theorizing disability in child protection: Applying critical disability studies to the elevated risk of abuse for disabled children. Disability & Society 35(6), pp. 949–971. Flynn, S. and McGregor, C. 2017. Disabled children and child protection: Learning from the literature through a non tragedy lens. Child Care in Practice 23(3), pp. 258–274. Goodley, D. 2013. Dis/entangling critical disability studies. Disability & Society 28(5), pp. 631–644. Hall, E. C. 2018. A critical geography of disability hate crime. Area 51(2), pp. 249–256. Hanson, K. and Peleg, N. 2020. Waiting for children’s rights theory. International Journal of Children’s Rights 28, pp. 15–35. Hollomotz, A. 2011. Learning difficulties and sexual vulnerability. London: Jessica Kingsley. Holloway, S. L. and Valentine, G. 2000. Spatiality and the new social studies of childhood. Sociology 34(4), pp. 763–783. Hummerstone, H. and Parsons, S. 2020. [Pre-print]. What makes a good teacher? Comparing the perspectives of students on the autism spectrum and staff. European Journal of Special Needs Education 0(0), pp. 1–13. James, A., Jenks, C. and Prout, A. 1998. Theorizing childhood. Cambridge: Polity. Jones, L., Bellis, M. A., Wood, S., Hughes, K., McCoy, E., Eckley, L., Bates, G., Mikton, C., Shakespeare, T. and Officer, A. 2012. Prevalence and risk of violence against children with disabilities: A systematic review and meta-analysis of observational studies. The Lancet 380(9845), pp. 899–907. Llewellyn, G., Wayland, G. and Marsh, S. 2016. Disability and child sexual abuse in institutional contests. Report for the royal Commission into institutional responses to child sexual abuse. Sydney: Commonwealth of Australia [online] [Accessed on 10 April 2021] Available from: www.childabuseroyalcommission.gov.au/sites/default/files/file-list/ Research%20Report%20-%20Disability%20and%20child%20sexual%20abuse%20in%20 institutional%20contexts%20-%20Causes.pdf Lundy, L. 2007. Voice is not enough: Conceptualising article 12 of the United nations convention on the rights of the child. British Educational Research Journal 33(6), pp. 927–942.

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The Right to Safety Mayall, B. 2013. A history of the sociology of childhood. London: Institute of Education Press. McKenzie, J. A. and Macleod, C. I. 2012. Rights discourses in relation to education of people with intellectual disability: Towards an ethics of care that enables participation. Disability & Society 27(1), pp. 15–29. Peleg, N. 2018. Illusion of inclusion: Challenging universalistic conceptions in international children’s rights law. Australian Journal of Human Rights 24(3), pp. 326–344. Riddell, S. 2020. Children and young people’s participation rights in schools and classrooms. Autonomy, Rights and children with special educational needs. Cham: Palgrave Macmillan. Robinson, S. 2015. Preventing abuse of children and young people with disability under the national disability insurance scheme: A brave new world? Australian Social Work 68(4) pp. 469–482. Robinson, S. 2018. Safety and harm in school: Promoting the perspectives of students with intellectual disability. Journal of Research in Special Educational Needs 18(S1), pp. 48–58. Robinson, S. and Graham, A. 2019. Promoting the safety of children and young people with intellectual disability: Perspectives and actions of families and professionals. Children and Youth Services Review 104, p. 104404. Robinson, S. and Graham, A. 2020. Feeling safe, Avoiding harm: Safety priorities of children and young people with disability and high support needs. Journal of Intellectual Disabilities 25(4), pp. 583–602. Robinson, S., Graham, A., Fisher, K. R., Meltzer, A., Blaxland, M. and Johnson, K. 2017. Preventing abuse and promoting personal safety in young people with disability. Southern Cross University. [online] [Accessed on 10 April 2021] Available from: https://apo.org.au/ sites/default/files/resource-files/2018-02/apo-nid137226_2.pdf Robinson, S., Graham., A., Fisher, K. R., Neale, K., Davy, L., Johnson, K. and Hall, E. 2020. Understanding paid support relationships: Possibilities for mutual recognition between young people with disability and their support workers. Disability & Society 36(9), pp. 1423–1448. Robinson, S., Speeding, J., Brewer, J., Coughlin, T. and Pathirana, N. 2018. Promoting personal safety and preventing abuse for young people with disability: new research and young people’s advice for improving services and systems. Intellectual Disability Australasia 39–2, pp. 14–20. Sandland, R. 2017. A clash of conventions? Participation, power and the rights of disabled children. Social Inclusion 5(3), pp. 93–103. Sarmento, M. J., Marchi, R. D. C. and Trevisan, G. d. P. 2018. Beyond the modern ‘norm’ of childhood: Children at the margins as a challenge for the sociology of childhood. In C. Baraldi and T. Cockburn (eds.), Theorising childhood: Citizenship, rights and participation. Springer International Publishing. pp. 135–157. Sloper, P. and Beresford, B. 2014. Children who have disabilities. In G. Melton, A. Ben-Arieh, J. Cashmore, G. S. Goodman and N. K. Worley (eds.), The Sage handbook of child research. pp. 245–265. Stalker, K. and McArthur, K. 2012. Child abuse, child protection and disabled children: A review of recent research. Child Abuse Research 21, pp 24–40. Tisdall, E. K. M. and Punch, S. 2012. Not so ‘new’? Looking critically at childhood studies. Children’s Geographies 10(3) pp. 249–264. Uprichard, E. 2008. Children as beings and becomings: Children, childhood and temporality. Children & Society 22(4), pp. 303–313. Young, D. A. and Quibell, R. 2000. Why rights are never enough: Rights, intellectual disability and understanding. Disability & Society 15, pp. 747–764.

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37 CECI N’EST PAS UN DÉNOUEMENT This is not a Conclusion Angharad E. Beckett and Anne-Marie Callus This handbook brings together contributions from authors around the world; among them are disabled young people, disabled adults, and others who are striving to be their advocates and/or allies. The chapters and testimonies are varied and powerful. Each one is valuable in and of itself. And we hope that readers will agree that the whole is greater than the sum of its parts. The book’s contribution is multiple. It articulates disabled children’s human rights. It exposes the social practices that deny them their rights, undermine their inherent dignity, and devalue their lives. It critiques the myriad disabling barriers that they and their families face and which reduce their quality of life. It also celebrates their lives and their very existence, providing a powerful antidote to medicalised, deficit-focused accounts that unfortunately prevail despite the rich literature about disabled childhoods emanating from disability studies. It provides insights into best practices for ensuring that disabled children are included and their voices are recognised and heard. It does all these things, and yet it does not do everything. We propose this handbook as a beginning. A beginning of what we hope will become a more sustained, interdisciplinary, and international effort to investigate children’s rights and disability. Thus, whilst this may be the final chapter of this handbook, we do not want it to be the conclusion. Our sentiment is captured in this quotation from Michel Foucault (1994, 162): I don’t write a book so that it will be the final word; I write a book so that other books are possible, not necessarily written by me. We also chose a title for this chapter which is a play on the phrase used by the artist Magritte in his work The Treachery of Images (‘Ceci n’est pas une pipe’). In his artwork, Magritte sought to destabilise accepted modes of thought and prompt alternative thinking. We felt this resonated with the intentions of contributors to this 666

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handbook, who have undertaken and are undertaking positively disruptive work. We hope their chapters and vignettes will prompt, among readers of this book, new ways of thinking in relation to the rights of disabled children and their lives. To say that we perceive this handbook to be a beginning is not to deny the progress that has been made since the 1990s, when disability studies researchers first began to engage with what was then termed the ‘new’ sociology of childhood and to consider the form that disabled children’s childhood studies might take (Priestley 1998), as we discuss in the introduction. An important paradigm shift has taken place. How we understand disability within childhood is no longer (solely) determined by medical and psychological discourse. Seminal works, such as that included in the edited collection ‘Growing Up with Disability’ (Robinson and Stalker 1998) and later work by Connors and Stalker (2003, 2007), were instrumental in developing a social model of childhood disability. Disability studies researchers have challenged deficit model articulations of disabled children and childhoods, associated assumptions about the desirability of normalisation, and what is in a child’s best interests. The idea that disabled children are passive and lack agency has been robustly debunked. Disabled children are now widely, if still not universally, understood as ‘social actors, negotiating complex identities within a disabling environment’ (Priestley 1998, p. 207). Assumptions about their incompetence have been challenged by multiple authors. In some of the earliest work in this vein, Davis and Watson (2001) demonstrated that disabled children can be competent participants in research and deliberations regarding their rights in everyday settings, provided that they are interacting with reflexive adults. Disabled children’s competency is now widely understood to be situated and fluid, largely dependent upon whether adults attribute agency to children, and take into consideration the effect of power relations between themselves and the child/ren. As time has progressed, the influence of disability studies perspectives has led to more research being conducted in which disabled children and young people are positioned as ‘subjects with voice’ instead of objects of study and interventions (Liddiard et al. 2019). There has been a growth in participatory research involving disabled children, including projects involving children as co-researchers. Many researchers now agree that the experts on matters of disabled children’s lives are disabled children themselves (Tisdall 2017). By 2014, Tillie Curran and Katherine Runswick-Cole felt that sufficient progress had been made to herald the arrival of a distinct ‘Disabled Children’s Childhood Studies’ (DCCS) approach. They summarised it thus: In disabled children’s childhood studies, disabled children are not viewed as necessarily having problems or being problems, but as having childhoods. (Curran and Runswick-Cole 2014, p. 1617) In their article, in addition to emphasising that DCCS has a profound concern with disabled children’s quality of life, Curran and Runswick-Cole (2014, p. 1619) identify five main elements to this perspective. First, they make clear that DCCS 667

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‘rejects the mythical status of the “normal” child as an end point’. Second, they stress the importance of recognising, simultaneously, the ‘ordinariness’ of disabled children’s childhoods and the myriad ways in which inequalities and inadequate support present obstacles to disabled children and their families having ‘ordinary’ lives and experiences. They highlight poverty as a key barrier in this regard. Third, they encourage researchers to continue ‘developing understandings from the perspectives of disabled children and young people’ whilst also recognising that there is value to listening to ‘significant others’ in children’s lives (ethically, carefully). Fourth, they insist that further exploration is needed of the experiences of disabled children and young people from the Global South. It is important that we recognise ‘disabled children’s diverse experiences in local contexts’ and situate this within a wider global context, understanding how ‘the part that discourses of childhood and disability play’ in ‘geo-political relations’. Fifth, they articulate DCCS as being concerned with ‘engaged sustained action’ by and with disabled children and their families and allies. We strongly support this agenda. In the remainder of this chapter, and fully acknowledging that we are standing on the shoulder of giants, we provide our own articulation of Curran and Runswick-Cole’s five elements. What follows is rhetorical rather than empirical—offered as a think piece.

No More ‘Chasing Normal’ There’s a quote that has become much memed—it reads thus: The inherent problem in the relationship between the ideal and the real is that the ideal judges the real as unacceptable and brings down condemnation and wrath on the real. (Cloud 1992) This quote appears to be popular among bloggers and influencers, and you can find it being used alongside other quotes, such as ‘in nature nothing is perfect and everything is perfect’ (attributed to Alice Walker) and the phrase ‘perfectly imperfect’ (no attribution but appearing on much ‘positivity merchandise’). We have not yet become so cynical or jaded that we would criticise or dismiss these quotations/phrases or their adoption by people around the world. Clearly, the ideas and the sentiments expressed resonate with many. Many of us recognise that the ideal, especially the ideal of perfection, is a fantasy, which is socially constructed. We know it is unachievable and that judging ourselves or others against some arbitrary ideal can be harmful. It is clear that many people want to get away from the tyranny of the ideal. Yet how many of us truly succeed? The tyranny of the ideal has long been and continues to be a problem facing disabled children and their families. We agree with Curran and Runswick-Cole that working against this tyranny must remain a primary goal of DCCS. Disabled children are still judged against a powerful ideal of the child and child development—one that 668

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is not recognised for what it is: as an ideology. It is, of course, an ideal of the child that is determined by and in the image of the dominant group. It is entangled with concepts of the ideal citizen and ideal nation. It is a neoliberal, ableist ideal constituted in/by the Global North and imposed on the Global South. It is not real, but it is powerfully disciplinary. Children who fail to conform to this ideal are often positioned as undesirable deviants and subjected to targeted interventions. The language used to describe these ‘deviants’ has changed over time. We are less likely to read of children being described as ‘deficient’ or ‘abnormal’. Yet a plethora of literature continues to refer to children as being ‘delayed’, having ‘disorders’ or ‘dysfunctional’ behaviours. And a quick glance at m/any parenting websites will confirm that the discursive labour performed by the ‘normal/abnormal child’ binary is currently being performed by the ‘typical/ atypical child’ binary. Typical children with appropriate social skills are able to form friendships easily. They can maintain healthy relationships and they understand social rules and standards. The social skills developed in childhood will lead to an emotionally healthy adult life. You can find out age-level pointers that will help you to identify any areas of concern in your child. Identifying atypical social development in your child will help you to get appropriate help early enough. (Books 2020, n.p.) Many professionals chase normal for disabled children because their training or their professional cultures are informed by deficit-model approaches. Many families chase normal for their disabled children because they are encouraged to do so by professionals who tell them that this is ‘doing the right thing’ for or by their child. Others chase normal because they feel pressured to try to normalise their child as a way to manage cultural expectations or reduce the stigma experienced by the child and by their family (‘courtesy stigma’). Others because they have reached the painful conclusion that in societies and communities that are far from inclusive, they have little alternative—it is simply necessary (for survival) to help children conform, as closely as possible, to societal norms. The reasons families chase normal are multiple and shaped by economic concerns, social formations, and cultural factors. The impact of ‘chasing normal’ on disabled children is profound. The disability activist Micheline Mason (1990, n.p.)—a pioneer advocate for the rights of disabled children—once memorably described it thus: Other children play, but you do ‘therapy’. Other children develop, but you are ‘trained’. Almost every activity of daily living can take on the dimension of trying to make you less like yourself and more like the able-bodied. She explains how disabled children internalise these negatives attitudes and the negative impact that this has on their identities, self-esteem, and confidence. It needs, she 669

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argues, ‘contradiction from outside, not the reinforcement it usually gets’. To this we add that there is need to understand and address the myriad factors that lead families to chase normal—and we need to do so empathetically and constructively. Here, then, is our rearticulation of the first objective of DCCS. We propose that it is, and needs to be, concerned with bringing an end to chasing normal. More precisely, we believe DCCS has a vital role to play in terms of • • • • •

contradicting the concept of the ‘ideal child’; critiquing the policies, programmes, and practices that reinforce this ideal; understanding and working to eliminate the factors that lead families to ‘chase normal’ or leave them feeling that there is no other option available to them; working with families to give them the confidence to take a different path; supporting all children and young people to reject the tyranny of the ideal, recognise their inherent value and that of others, and celebrate differences.

Knowing What Is and What Is Not Ordinary Disability studies researchers have documented disabled children saying that they would like to be considered as ‘ordinary kids’ and that families of disabled children desire an ‘ordinary life’. As we have discussed previously, disabled children are not always considered to be ordinary kids—and this is problematic. It is, for example, why segregated, special education persists in so many countries, irrespective of their purported commitment to inclusive education. It may not be so obviously stated, but it remains obvious in every other way that an oppressive logic is at work: since disabled children are not ordinary, they cannot be (and it is reasonable that they are not) accommodated within ordinary schools. This is how exclusion is re/produced and is but one example of the impact of failing to acknowledge the ordinariness of disabled children as children. All children are unique. All children have abilities. All children have struggles. All children’s developmental pathways differ. This is ordinary. This is the ordinary child. Every child. Yet whilst disabled children are indeed ordinary children, there is plenty that is far from ordinary about their lives. Globally: •

Mortality for children with disabilities may be as high as 80% in countries where under-five mortality as a whole has decreased below 20% (UN Dept. of Economic and Social Affairs 2022). 670

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•

•

•

• •

Children and adolescents with disabilities are three to four times more likely to experience physical and sexual violence and neglect than other children (UN Special Representative on Violence Against Children 2022). Overall, about 25% of the billion children in the world are still out of school. Disabled children are more likely to be out of school. At least 50% of children with disabilities are excluded from education in low- and middle-income countries. In some contexts, the figure is closer to 90% (Humanity and Inclusion 2020). In many countries, ‘children with disabilities are often deprived of their liberty, separated from family environments, and confined to institutions or locked away in so-called health-care facilities in the name of care and treatment. The reasons for this isolation vary: stigma, lack of awareness and a dearth of support services for children and their families’. Inside institutions, children can face serious neglect and abuse, denial of education, and of regular contacts with their families (Humanity and Inclusion 2020). The pandemic intensified the vulnerabilities of disabled children, increasing their risk of exclusion, poverty, and lack of access to crucial services (UNICEF 2022). Children with disabilities are often at greater risk during armed conflicts— including risk of abandonment. Their families can face a split-second decision, either to flee only with family members who can flee easily or to remain behind to provide support (Human Rights Watch 2022).

It would be a mistake to assume that the only disabled children facing discrimination, violence, and exclusion are those living in low/er-income countries. There is a complex relationship between poverty, geopolitical instability, the denial or violation of rights and disability. Nevertheless, the presence of resources within a society is not always sufficient to ensure disabled children’s rights are upheld and that they are provided with the support they need to flourish. For example, in the UK, which is the sixth largest economy in the world, disabled children are more likely than non-disabled children to grow up in poverty (MacInnes et al. 2014, p. 2), ‘live in a household without a car, in a home without central heating, and in overcrowded housing’ (Buckner and Yeandle (2017, n.p.). They are at increased risk of being abused compared with their non-disabled peers (Jones et al. 2012) and are less likely to receive the protection and support they need when they have been abused (Taylor et al. 2014). Across numerous studies in the academic and grey literatures, families of disabled children in the UK report struggling to meet the extra costs involved in providing care to a disabled child; parents being unable to work full-time because of caring responsibilities, leading to financial worries or crisis; inadequate social care support, including respite care, leaving families exhausted and isolated; encountering barriers to or lack of choice in relation to participation in recreation, leisure, and community activities; having to fight for the right of their child to high-quality inclusive education. The barriers to ordinary lives for disabled children exist and persist due to many factors, not just economic. Political, social, and cultural factors also play their part, as do social imaginaries, that is, how societies imagine their collective life. 671

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Here, then, is our rearticulation of the second objective of DCCS. We propose that it is, and needs to be, concerned with identifying and critiquing all the barriers to ordinary lives for disabled children and their families. To achieve this will necessitate filling the many gaps in knowledge about disabled children’s lives and disabled childhoods, globally (UNICEF 2013). How many disabled children are there? Where are they living, and with whom? What are their living conditions? Are they receiving quality healthcare and education? Despite calls from and efforts by organisations such as the World Bank and UNICEF, data from many countries around the world is still very patchy. When disabled children are missing from the statistics, there is every likelihood they are being forgotten in policymaking processes. It also makes monitoring progress towards achieving human rights for disabled children difficult. Further, it limits our ability to develop suitably nuanced understanding of how their lives are shaped by different economic and welfare systems, by cultural constructions of disability and childhood, by varied social formations and family structures. There is much work still to be done. More precisely, we believe DCCS has a vital role to play in many ways. Here we propose a list, for which we acknowledge the influence of Michael Freeman’s work: • • •

Understanding disabled childhoods as a social phenomenon; Recognising disabled childhood as a structural space in societies; Investigating how disabled children’s interests find expression (or not) within different societies and communities; • Establishing what rights accrue to disabled children and young people and whether these rights effectively advance their equality; • Considering whether/how rights influence children’s identities, freedoms, and societal participation in different cultural contexts; • Asking what is at stake when disabled children’s rights are compromised; • Challenging everyone who has any power to make a difference in the lives of disabled children to answer the question: Do you truly believe that disabled children are endowed with human rights?; • Articulating, clearly, what needs to be done to ensure that their human rights are guaranteed, their dignity and well-being are assured, and they have a good quality of life.

Understanding From a Disabled Child’s Perspective The philosopher and theologian Peter Tillich is said to have once commented that ‘[t]he first duty of love is to listen’ (no agreed source). This is a powerful statement. It will no doubt resonate with many readers. It certainly resonates with us. But what does it really mean for the researcher who wants to practise radical love—the type of love for humanity that is a powerful antidote to oppression? We both came of age as researchers during an era/period when most people who aspired to be an ally thought they had the answer (this was before we understood that ‘ally’ is a verb, not a noun when it comes to social justice activism). We were going 672

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to listen to and ‘provide a platform’ for the voices of the marginalised and disempowered. That included disabled children. We wanted to make sure that their voices were heard. We believed our research could deliver this. Our role as researchers was to bear witness to voices that were too often silenced. Our textbooks told us that doing this was a transformative act. Our actions, along with those of many other social researchers, were well-intended and authentic. Whilst we do not wish to fundamentally question these ambitions, as we have grown older and, we hope, wiser, we have asked ourselves uncomfortable questions: Are we certain we are always listening, really listening? | Do we know if the privileged ‘providing platforms’ is the best way to ensure the voices of marginalised people are heard? | If ‘providing platforms’ matters, are we providing the best platforms? | Whilst we were busy providing platforms, do we know who was listening? | Were the ‘right’ people listening? Did their listening achieve positive, lasting change in the lives of disabled children? | Is listening enough? | We are not sure we have answers to all these questions. We do feel able to answer the first and last, however. Were we always really listening? Answer: probably not as well as we might. Is listening enough? Answer: yes, but only the right type of listening. Our commitment to listening remains intact. It is essential if we are to understand things from disabled children’s perspectives. But we now understand that what is needed is ‘radical listening’. At the most basic level, this means getting far beyond tokenistic engagement of disabled children in research. It also involves developing a degree of scepticism towards empowerment-based approaches which suggest that it is possible, and that our objective ought to be, to transfer power from adults to children, from the powerful to the powerless. Adopting a Foucauldian understanding of power means recognising that the powerful do not have the monopoly on power; power flows via relationships, that transactional approaches that seek to ‘give’ power to disabled children are likely to be less effective than those that seek to support disabled children to harness and operate power themselves. Thinking about how to achieve this is, we propose, an important task for DCCS. Our own thinking, which in itself is still a work in progress, is that we need to understand radical listening as a practice that requires practise. It demands that we be reflective about our practices as researchers. Kincheloe (2005) advises that it involves us researching ourselves. Not in some self-indulgent manner, but in order to understand the social and ideological forces that shape our practices and to ask ourselves what it truly means to be human. In an article that we recommend highly, Kress and Frazier-Booth (2016) encourage those concerned with children’s rights and flourishing to listen for the echoes, between the lines and across expanses. Readers can interpret those metaphors in their own ways as relevant to their work. But the objective of this radical listening is to be/become attentive to the past whilst opening up trajectories towards possible futures. For us, what Kress and Frazer-Booth are imagining 673

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is the creation of heterotopic spaces—whether that be in research or professional practice. Heterotopias are spaces that operate to make existing orders legible. By so doing, they unsettle received knowledge—that is, common sense: Heterotopias can be understood as real experiments in thinking and being differently, lived in the present. They provide escape routes from the norm, enlarging the possibilities for self-determination. They are spaces that facilitate and organize resistance practices. (Beckett et al. 2017, p. 172) Here, then, is our rearticulation of the third objective of DCCS. We propose that it is, and needs to be, concerned with radical listening. This is about more than providing a platform for disabled children’s voices. It is about more than understanding from a disabled child’s perspective. Both are important. It is also, however, about creating a certain type of space—whether that’s in a research project, in the clinic, or in the classroom—that allows for relationships to build between adults and children that enable disabled children to harness power, create lines of flight, and activate resistance. We are certain that it is by doing this that we will not only gain more nuanced understanding of disabled children’s experiences and aspirations but also become their accomplices (more than their allies), helping them refashion the world via creative trajectories.

A Time for Decolonial Listening Across disability studies, there is a growing awareness of the need for what are variously termed post-colonial or de-colonial perspectives. This is true within contemporary DCCS. Again, at a basic level, this is a call for more research into the position and experiences of disabled children who live outside of the Global North. It is, however, about more than this. De-colonial thought exposes the coloniality within the Global North, especially within Western (Eurocentric) modernity and Western thinking. It prompts us to interrogate the supposed ‘neutrality’ of knowledge produced in the West, and the prefix ‘de’ suggests that this is an approach that seeks to actively deconstruct colonialism wherever it exists, including within academic thought, legal frameworks, policies, programmes, and professional practices. Recently, we came across an intriguing online magazine article by Emily Hansell Clark (2021) in which she explores the concept of ‘decolonial listening’. She argues that ‘colonial logics continue to resonate through contemporary listening practices all over the world’. She challenges us to consider how scholarship and acts of listening might serve to challenge colonial logics. Here, then, is our rearticulation of the fourth objective of DCCS. We propose that it is, and needs to be, concerned with decolonial listening, recognising, and not reinscribing colonial logics. There is urgent need to bring to an end research and other practices that articulate disabled children and their childhoods in the majority world according to the assumptions, preoccupations, and ideologies of the minority world. 674

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What is needed is a re-appraisal of difference and diversity in disabled childhoods as part of a critique of universalisms of knowledge, which have all too often resulted in a deficit model of childhood in the Global South (de Castro 2020). This will inevitably result in yet more uncomfortable questions, not least whether ‘the steadfast consolidation of children’s rights’ in international law, such as the UN CRC and UN CRPD, has ‘contributed to the worldwide view of a global standard of childhood even though based on the historically and culturally bound ideals of Europe and the United States’ (de Castro 2020, p. 50). Does this mean abandoning a concern with human rights? We think not. We do, however, encourage everyone concerned with disabled children’s quality of life, dignity and flourishing to consider what it might mean to ‘decolonise human rights’. Fortunately, there are people out there who have already begun to think about this. In 2018, for example, Salil Shetty (then Secretary General of Amnesty International) applied the ‘lens of decolonisation’ to say three things about human rights: Firstly, the essence of human rights and decolonisation are basically the same thing: the struggle for freedom against the abuse of power. The modern human rights framework as we know it was born in the crucible of decolonisation. It is a historical context we would do well to remember. Secondly, human rights themselves have always been subject to efforts at colonisation: misappropriation and being manipulated for political ends. We need to recognise this for what it is, and in this sense the fight to decolonise human rights is a permanent one. And thirdly, to be true to the character of human rights, we need to reconnect again with the struggles of ordinary people against abusive power. (Shetty 2018, n.p.) We believe this provides a useful road map for engaging critically but also constructively with the issue of human rights for disabled children as they are currently articulated within international law and elsewhere.

Focusing on Change We reach the fifth element of DCCS—which Curran and Runswick-Cole describe as ‘engaged sustained action’ by and with disabled children, their families, and their allies. This is vital. For academic researchers such as ourselves, it means engaging in academic activism—which sometime involves supporting (behind the scenes) disabled children and their families to take action. At other times, it involves working with them. Very occasionally, it might mean fighting for them, but only when circumstances necessitate. The principle of ‘nothing about us, without us’ is important. It also means reflecting on what that entails and avoiding ‘cosy’ understandings of academic activism (perfectly captured for us in Figure 37.1, a cartoon by Aaron Adatto Sandel, which we reproduce here with his permission). It is not just about organising panel discussions or being indignant on social media. These things can 675

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Figure 37.1

‘Academic Activism’ by Aaron Adatto Sandel.

be helpful, but their impact is always going to be limited. We are not advocating for academics or others to put themselves into danger, to lie down in front of tanks! But we are advocating for people to give even more thought to building positive impact into their activities. Adopting a Freirian-inspired approach might offer a way forward. First, we need to listen. Then we need to reflect—not for the sake of it, but for the purpose of change. Next, we take action and reflect on the action. And the cycle begins again. We suggest that it is not only academics who might engage in this listeningreflecting-acting cycle, however. It also applies to those outside of academia, who are part of the important children’s rights movement. It has become increasingly apparent to us that there is a divide at present between two groups or ‘camps’: between academic researchers whose work might be considered part of DCCS and who mostly have backgrounds in sociology, critical psychology, and social work, and a disabled children’s rights community, which is dominated by people with legal backgrounds or working with legal perspectives, alongside families of disabled children. Both have made valuable contributions. We do not want to exaggerate the differences between these two ‘camps’. Clearly, those who have been primarily concerned with researching and theorising disabled childhood, disabled children’s identities, and ‘worlds’ have recognised and promoted the importance of 676

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disabled children’s rights, and those who are primarily concerned with advocating for children’s rights have not been disinterested in studies of disabled childhoods. Yet there has not always been as much dialogue between the two camps as might have been expected or desirable. We believe there is much to be gained from greater engagement between ‘sociological’ and more ‘legalistic’ approaches. More in-depth engagement by DCCS researchers with members of the disabled children’s rights community might prompt more reflection on the question of how we can translate ‘greater understanding’ of disabled children’s identities, experiences, and perceptions into actionable knowledge. In return, DCCS as a field can offer legal advocates/activists nuanced understanding of disabled children’s identities and lives. Legal advocates and other activists might find within DCCS alternative evidence and insights which they can use to expand their argumentative repertoire. Further, we suggest that the manner in which disabled children create their social worlds is seldom considered within legal arguments, and this is a significant omission. Sociological research can help in this regard—allowing legal advocates to gain a better understanding of a variety of important issues, for example, how disabled children understand family or what they perceive ‘being consulted about matters that affect them’ looks and feels like. Sociological research can also provide an antidote to overly abstracted legal arguments. We all know that the existence of human rights legislation or policies does not mean that they are enacted effectively. It is a source of frustration to many that despite States Parties signing and ratifying important human rights conventions, this is not always enough, and many do not abide by their commitments. Social research can be helpful here, reminding us that human rights are not made ‘real’ by the signing of conventions or passing of legislation through parliaments. These things do matter. But where human rights are made ‘real’ is in the quotidian, the every day. For disabled children, their human rights are made real via the actions of those around them—adults and peers. Gathering evidence of effective practice in relation to the everyday realisation of disabled children’s human rights is important, and we need to gather this from around the world. Providing those who fight for the rights of disabled children (e.g. international human rights organisations) with examples of how human rights can be made ‘real’ will help them undermine arguments that we hear too often from governments: that ensuring disabled children’s human rights is difficult, takes time, or requires more resources than are available. Here, then, is our rearticulation of the fifth objective of DCCS: we strongly endorse Curran and Runswick-Cole’s call for sustained action. The action we want to see involves adoption of a listening-reflecting-action cycle and greater engagement between more ‘sociological’ and more ‘legalistic’ approaches adopted by DCCS and the disabled children’s rights communities, respectively. We have hope in this regard, not least because of our experience of putting together this handbook. The authors who responded to our call for chapters come from different fields and would associate with one of the two ‘camps’ we have described here. As part of the process of developing this book, we all came together to listen to each other talk about our chapters, to offer observations and feedback. We noted that there was appetite for this among 677

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the contributors, and from their comments, we realised that they had valued this opportunity for dialogue and exchange. We hope that these discussions will continue.

And Now to Conclude This Non-Conclusion We shall be brief. We began this chapter by quoting Michel Foucault, in which he explained why he wrote books—to make other books possible. We hope that this handbook makes many more books possible. But the books we have in mind are books that offer us new ways of thinking, being, and doing, so that we can be better ‘accomplices’ to disabled children and their families. We end by quoting another great social theorist, Zygmunt Bauman: Why do I write books? Why do I think? Why should I be passionate? Because things could be different, they could be made better. (Cited in Bunting 2003, n.p.) We believe this is a sentiment shared by the authors who contributed to this handbook. It is what animates our own work. We hope that the content herein has been/will be helpful to others as they also strive to make the world a better place for disabled children.

References Beckett, A. E., Bagguley, P. and Campbell, T. 2017. Foucault, Social movements and heterotopic horizons: Rupturing the order of things. Social Movement Studies 16(2), pp. 169–181. Books, S. 2020. What is the difference between typical & atypical children?. [online] [Accessed on 19 July 2022] Available from: www.moms.com/typical-atypical-childrendifference/#:~:text=Typical%20children%20with%20appropriate%20social,an%20 emotionally%20healthy%20adult%20life Buckner, L. J and Yeandle S. 2017. Caring more than most: A profile of UK families caring for disabled children. Report. Contact a Family with University of Leeds. [online] [Accessed on 19 July 2022] Available from: https://contact.org.uk/wp-content/uploads/2021/03/caring_more_than_most_full_report.pdf Bunting, M. 2003. Passion and pessimism. The Guardian 5 April 2003. [online] [Accessed on 19 July 2022] Available from: www.theguardian.com/books/2003/apr/05/society Cloud, H. 1992. Changes that heal: The four shifts that make everything better . . . and that anyone can do. Grand Rapids: Zondervan. Connors, C. and Stalker K. 2003. The views and experiences of disabled children and their siblings: a positive outlook. London: Jessica Kingsley. Connors, C. and Stalker, K. 2007. Children’s experiences of disability: Pointers to a social model of childhood disability. Disability & Society 22(1), pp. 19–33. Curran, T. and Runswick-Cole, K. 2014. Disabled children’s childhood studies: A distinct approach? Disability & Society 29(10), pp. 1617–1630. Davis, J. and Watson, N. 2001. Where are the children’s experiences? Analysing social and cultural exclusion in ‘special’ and ‘mainstream’ schools. Disability and Society 16, pp. 671–688. de Castro, L. R. 2020. Why global? Children and childhood from a decolonial perspective. Childhood 27(1), pp. 48–62. Foucault, M. 1994. [1971] Entretien avec Michel Foucault. [Interview with Michel Foucault] In Dits et Ecrits [Sayings and Writings] vol II (of 4 volume version). Paris: Gallimard, pp. 157–174. (This passage trans. Clare O’Farrell).

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Ceci n’est pas un dénouement Freeman, M. (2012) ‘Towards a Sociology of Children’s Rights’, Law and Childhood Studies: Current Legal Issues, Volume 14, (pp. 29–38). Hansell Clark, E. 2021. The ear of the other: Colonialism & decolonial listening. [online] [Accessed on 19 July 2022] Available from: https://thequietus.com/articles/29445-soundcolonialism-and-decolonial-listening-focus-on-sound-emily-hansell-clark Human Rights Watch. 2022. UN: High risk in conflicts for children with disabilities. Urgently strengthen protection, assistance, inclusion. [online] [Accessed on 16 December 2022] Available from: https://www.hrw.org/news/2022/02/02/un-high-risk-conflicts-children-disabilities Humanity and Inclusion. 2020. No more children with disabilities out of school. [online] [Accessed on 19 July 2022] Available from: https://humanity-inclusion.org.uk/en/news/ no-more-children-with-disabilities-out-of-school Jones, L., Bellis, M. A., Wood, S., Hughes, K., McCoy, E., Eckley, L., Bates, G., Mikton, C., Shakespeare, T. and Officer, A. 2012. Prevalence and risk of violence against children with disabilities: A systematic review and meta-analysis of observational studies, The Lancet 380(9845), pp. 899–907. Kincheloe, J. L. 2005. Critical constructivism. New York: Peter Lang. Kress, T. M and Frazier-Booth K. J. 2016. Listening for the echoes. Radical listening as educator-activist praxis. International Journal of Critical Pedagogy 7(3), pp. 99–118. Liddiard, K., Runswick-Cole, K., Goodley, D., Whitney, S., Vogelmann, E. and Watts, L. 2019. I was excited by the idea of a project that focuses on those unasked questions Co-producing disability research with disabled young people. Children and Society 33(2), pp. 154–167. MacInnes, T., Tinson, A., Gaffney, D., Horgan, G. and Baumberg, B. 2014. Disability, long term conditions and poverty: A report for the Joseph Rowntree Foundation. [online] [Accessed on 19 July 2022] Available from: www.npi.org.uk/files/7814/0490/1005/Disability_long_term_ conditions_and_poverty.pdf Mason, M. 1990. Internalised oppression. Available via the Disability Archive, University of Leeds. [online] [Accessed on 19 July 2022] Available from: https://disability-studies.leeds. ac.uk/wp-content/uploads/sites/40/library/Mason-Michelene-mason.pdf Priestley, M. 1998. Childhood disability and disabled childhoods: Agendas for research. Childhood 5(2), pp. 207–223. Robinson, C. and Stalker, K. eds. 1998. Growing up with disability. London: Jessica Kingsley. Shetty, S. 2018. Decolonising human rights. Speech delivered by Salil Shetty, Secretary general of amnesty international, At the London School of Economics on 22 May 2018. [online] [Accessed on 19 July 2022] Available from: www.amnesty.org/en/latest/news/2018/05/ decolonizing-human-rights-salil-shetty/ Taylor, J., Stalker, K., Fry, D. and Stewart, A. B. R. 2014. An investigation into the relationship between professional practice, Child protection and disability. Edinburgh: The Scottish Government. Tisdall, E. K. M. 2017. Conceptualising children and young people’s participation: Examining vulnerability, Social accountability and co-production. The International Journal of Human Rights 21(1), pp. 59–75. UN Dept. of Economic and Social Affairs. 2022. Factsheets on persons with disabilities. [online] [Accessed on 19 July 2022] Available from: www.un.org/development/desa/disabilities/resources/factsheet-on-persons-with-disabilities.html UN Special Representative on Violence Against Children. 2022. [online] [Accessed on 19 July 2022] Available from: https://violenceagainstchildren.un.org/content/children-disabilities UNICEF. 2013. The state of the world’s children 2013. Children with disabilities. [online] [Accessed on 19 July 2022] Available from: www.unicef.org/reports/ state-worlds-children-2013 UNICEF. 2022. Protecting children and adolescents with disabilities from: the pandemic. COVID-19 and children with disabilities in Europe and Central Asia. [online] [Accessed on 19.06.2022] Available from: www.unicef.org/eca/protecting-children-andadolescents-disabilities-pandemic.

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ableism 39, 168, 213, 314–315, 376, 378, 381, 383, 385, 421, 585, 640; and other forms of oppression 557, 637, 640, 641, 643, 645 abortion: and disabled foetus 333, 343–345, 360; and Down’s Syndrome 324, 341–342, 344–349, 368–369; and stigma 330; see also case law, and surrogacy; Supreme Court, and US abortion laws academic activism 675–678 adaptive sport 376 additional costs (of disability) 132, 135, 141, 157, 539 adolescents 157, 214–219, 230, 239, 513, 514, 521; and advanced care planning 476; and Circle of Friends 609–610; and friendships 599–602; with intellectual disabilities 604–608; and sex education 625–627; and sexuality 620–624, 626; support for 608–611; views of 287, 544, 602–603; and ‘voice’ 214, 230, 287, 472, 476 advanced care planning 476–478 advocates: of abortion 344; autistic 383; disability rights 346–353, 369, 649; healthcare 467–442; human rights 78; legal 677; parents as 52, 217, 377, 395–396, 402, 450, 452–445, 467, 493; of prenatal screening 365; self- 123, 285, 443; see also Autistic Self Advocacy Network agency 24, 75, 102, 106, 167–168, 379, 556–558; children demonstrating 198,

250–254, 565–569; denial of 76, 95, 120, 188, 385; and disabled children’s childhood studies 652–653; facilitating 121, 170, 245–250, 257–259, 315, 382–383, 658; and methodology 559–562; and play 558, 565–559, 571–572; recognising children’s 190, 667; and rights 555; and safety 649 alternative communication 268, 270, 272, 282, 296, 418, 428, 439 American Psychiatric Association (APA) 117–118 Arendt, Hannah 304, 307–308, 310, 312, 314, 315 artistic expression 245–246 assistive products: classification of 434; as rights-enablers 439–442; see also assistive technology assistive technology: and best interests 442, 447; and equal opportunities 439; and stigma 445–447; and World Health Organisation (WHO) 432–433, 446; see also Human Activity Assistive Technology (HAAT) autism: and autonomy 120–121; bullying 603; educational transitions 603; and inclusive methods 172–175, 193, 294; lived experience of 111–112, 245, 263–264, 501–502; and parenting 452–453; rights-based approach to 23, 29, 31, 63, 65, 120–125; stereotypes 378; storying 115–120; and transgender 624

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Index Autistic Self-Advocacy Network 122–125, 378, 383 autonomy and assistive technology 436, 439, 444–447; and education 492, 528–529; in healthcare 215, 227; and human rights model 18–21, 24; and inclusive methods 167–170, 182–183; and privacy 452, 455–460; vs. protectionism 618–619 (see also autism; intellectual disability); relational model 124–125, 216; and safety 655, 658; and self-determination 270; and sexual rights 617; and supported decision-making 215; and ‘voice’ 190 babies see infants and imagined futures Bauman, Zygmunt 309–310, 314–315, 540–543 best interest/s 21–23, 31, 32, 40, 41, 42–46, 48, 50, 51, 61, 93, 124, 315–316, 458–459, 461, 549, 618, 667; concluding observations on 69; as contested 619, 650; and decision-making (healthcare) 213–214, 216, 218, 221, 229; and impairment 14, 233; and institutionalisation 25, 63; professional perspectives 201, 627 (see also assistive technology; end-of-life); and sexual rights 619, 621–662; and surrogacy 364–365, 370; and UN Convention on the Rights of Persons with Disabilities (CRPD) 20, 57–58, 340; and ‘voice’ of child 62, 440, 442 best practice 157, 381, 487, 491, 513, 541, 666 bilingual schools 506, 513–514, 539 Care Dependency Grant (South Africa) 150, 154 case law and education 486–487, 491, 493–494; and right-to-life 344–345, 363–364; and surrogacy 361–364 child-centred research see inclusive research; social model, and participatory methods child participation: barriers to (healthcare) 217–222; guidelines for (healthcare) 230–239; and harmonising CRC and CRPD 43, 168–171; in healthcare decision-making 77, 210–213, 227–228; legal frameworks (healthcare) 213–217, 228–229; see also inclusive research chronic pain 236 Circle of Friends 609–611

civil society and inclusive education 509, 514–515; and United Nations reporting mechanisms 78 classroom 30, 118–119, 200, 203, 250, 252–254, 285–287, 264, 285, 287, 339, 393, 399–402, 506–509, 513, 517, 521–527, 530–532, 549, 601, 606, 610, 640, 674; see also education; Universal Design for Learning (UDL) cochlear implants 539–542 cognitive impairments 62, 99, 103–104, 135, 220, 466; see also intellectual disability communication passport 285–286 concluding observations (of Committee on the Convention on the Rights of Persons with Disabilities [CRPD]) 23, 27, 29–30, 57, 59–60, 68–70, 78, 328; and best interests 61; and child ‘voice’ 62; on education 521; and institutionalisation 63–64; on intersectionality 67; and National Policies 66; and violence/abuse 65 construction of childhood 652 critical policy analysis 57, 59 critical race theory 633–634, 644–645 cultural life and CRPD 97–99, 105, 420, 539, 577–550, 584–585, 590 deaf children 63, 383; deaf education in Hong Kong 545; denial of right to language 540–543; and legal right to language 537–538; in the United States 547; ‘voice’ of 543–548; see also deaf children; deaf education decision-making 75, 228, 370, 466, 529; and family 212; substituted 229; supported 215–216, 222, 229; see also agency; autonomy decolonial listening 674–675 deprivation 17, 215; of family life 31; linguistic 537, 540; see also poverty statistics design process 413–428, 443 design thinking 412–413 destigmatisation 156, 628 diagnostic overshadowing 623–624 dignity 22–25, 31–32, 42, 308, 315, 658, 663; arts-enabled expression of 179, 194; and autism 121–125; and bioethics 371; see also privacy, right to disability rights movement 80, 227, 369, 376, 400 disability support worker 470

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Index Disabled Children’s Childhood Studies (DCCS) 667–677 disabled migrant children 634, 636–638, 641–643 disabled young researchers 79–80, 87 Down’s Syndrome: arguments in favour of prevention of 351–352; and bioethics 314, 360; denial of hope (to parents of children with) 313, 375; infants and imagined futures 304, 308; legal ethics of termination bans 345–346; lived experience 101; and parent-child relationships 350– 351; positive information about 316–317 (see also abortion, and Down’s Syndrome); and screening 360; and surrogacy 368–369 education, equality and 514, 525–526, 529–532; see also inclusion and education education professional 193, 199–200, 509, 608; see also stigma/tisation elementary school see primary school embodied expression 249, 266, 273–275 embryo and Human Fertilisation and Embryology Act 1990 (UK) 321; and selection 354, 357–359 end-of-life: and best interests 476; and family 469–471, 473–474, 476, 478 epistemic injustice 294–295, 531 equality and UN Conventions 272, 521–524; for all children 17–25; of hopefulness 308, 314–315; of opportunities 130, 136, 439, 521–526, 530; sexual 618 (see also assistive technology; education); training 385 European Commission 132, 141, 223–224 European Convention on Human Rights (Art.5) 4 European Court 363–364, 368, 371 European Disability Strategy 132, 550 expression of view 74, 216, 282–285, 292; of ‘voice’ 191, 202 family and alternative care 27–28; child perspectives on 98–101, 193; denial of hope to 313, 316; health professionals and 382–383; and poverty 133, 136, 138, 141; right to 21–27, 32, 60; see also advocates, parents as; decision-making, and family; end-of-life, and family; stigma/tisation, ‘courtesy’ foetus 321–323; Human Rights violations of 364; parental rights and 367–369; screening of 360; UN legal frameworks and 329–330; see also abortion; surrogacy

Foucault, Michel 212, 666, 678; and disability dispositive 522–525 freedom of choice 444 freedom of expression (for children) 167–168, 244, 276–277; for children with severe and multiple disabilities 266–267; phenomenological approach to 274; in research 169–170, 175, 182–184, 272; see also embodied expression; UN Convention on the Rights of the Child (CRC); UN Convention on the Rights of Persons with Disabilities (CRPD) free play 189, 555, 562–563, 567, 572 friendship/s and language rights 547, 599–601; role of schools 608–611 (see also Circle of Friends); and school transitions 602–607 General Comment [Committee on Economic, Social and Cultural Rights] (14) 230 General Comment [Human Rights Committee] (36) 329 General Comments [Committee on the UN Convention on the Rights of the Child] (4) 230; (9) 21, 26, 214, 230; (12) 43, 46, 228, 231; (14) 20, 22, 43–44; (15) 230, 231; (17) 578; (20) 214, 216 General Comments [Committee on the UN Convention on the Rights of Persons with Disabilities] (1) 227, 231; (4) 504; (5) 28, 131; (6) 19; (7) 20 global health 363–364 healthcare and stigma 377–378, 387; team 379, 382, 384, 445; see also child participation high school see secondary school history of disability 374–375, 617 Human Activity Assistive Technology (HAAT) 442 human rights law see European Convention on Human Rights; International Covenant on Civil and Political Rights; UN Convention on the Rights of the Child; UN Convention on the Rights of Persons with Disabilities human rights model 6–7, 18–19, 44–51, 66, 125, 215, 332, 584, 586; and social model 44 Human Rights Watch 25–26, 140, 671 impairment and dignity 24; assessment of 152–153; deficit-model perspective

682

Index towards 77, 218, 221, 246, 265, 320, 378–383, 475; definition of 5–7; and Human Rights 19; parental attitudes towards 218, 367; and perceptions of competency 214; and poverty 129–130, 134–138, 141–142; see also abortion; best interests; foetus implicit bias 374–378, 385 inclusion and education 401–404, 485–487, 489–495, 505–506, 509, 512–517, 522–523, 532, 601, 604, 605; Circle of Friends and 609–611; and safety 660; and stigma 156; see also Salamanca Statement; VIPER Project; young researchers inclusive design and ‘designerly’ ways 426–428; for paediatric mobility 420–421; and universal design 485–486; see also Universal Design for Learning (UDL) inclusive education see civil society; education; inclusion, and education; independent living; Salamanca Statement; UN Convention on the Rights of Persons with Disabilities (CPRD), (Art 24) inclusive paediatric mobility 415, 420–422, 427–428 inclusive playspaces 555–556 inclusive research 561–564; see also autism, and inclusive methods; autonomy, and inclusive methods; social model, and participatory methods; VIPER Project; young researchers independent living and inclusive education 117; centres for 383 individualised education plan (IEP) 200, 393, 490–494, 522, 528, 634 individual model 114, 118–120, 578–580, 632 infants and imagined futures 303–305; medicalisation of disabled 309; see also abortion; Down’s Syndrome, infants and imagined futures; surrogacy institutionalisation see best interest/s, and institutionalisation; concluding observations (of Committee on the Convention on the Rights of Persons with Disabilities [CRPD]), and institutionalisation intellectual disability: lived experience 207–208, 394; and self-determination 270; school transitions for 604–608; and UN Convention on the Rights of Persons with Disabilities (CRPD) 271; see also cognitive impairments International Covenant on Civil and Political Rights 330

language rights see deaf children legal capacity 4, 48–51, 215–216, 229–230 lived experience and ‘voice’ 190–191, 194; importance of 67–70, 78, 92, 265, 386, 418, 489, 624, 634; parental and poverty 137–139; views of CRPD Committee 57, 59, 99, 106 mainstream school 31, 101, 248, 289; see also inclusion, and education Salamanca Statement; UN Convention on the Rights of Persons with Disabilities (CRPD), (Art.24) medical model of disability 18, 23–26, 40–41, 66, 77–78, 118, 125, 152, 246, 332, 346– 347, 378–382, 484–495, 579, 584–585, 624, 640, 643; see also individual model medical system 314–315, 374–379, 385 migrant children see disabled migrant children mosaic approach defined 191–192 multiple disabilities 198, 254, 265–267, 286 multiple learning disabilities 250, 289 music 247–248, 256, 286, 293; access to as a right 577–578; and musicality 580–581; therapy 578–580 occupational therapy 202, 438, 579 palliative care see end-of-life parent/s: commissioning (surrogacy) 357–359; consent in research 82–83; and healthcare decision-making 217–218, 244; and hope 216, 311–314; peersupport amongst 453–455; positive information for 24, 27, 380–384; and poverty 137–139; and privacy of child 460–467; response to diagnosis 306–307, 376–377; and right to family life 28; and ‘sharenting’ 451–443, 455–440; working with 201, 381, 384–386; see also abortion; end-of-life; surrogacy participation see child participation paternalism 23, 45, 229, 444–447, 557, 619, 622; see also parent/s, and healthcare decision-making personal information 451–453, 456–459; see also privacy, right to; social media personal safety see safety play experience 563, 570–572 politics of wonder 113–115, 121–122 poverty statistics 67, 142; see also deprivation; impairment; lived experience; parent/s

683

Index pregnancy see abortion; surrogacy prenatal screening 322–324, 341, 347–348, 360, 363–365 primary school, transitions to secondary 600–608 privacy, right to 65, 269; and abortion access 342–345, 352; and best interests 458, 461; and dignity 460–461; see also parent/s, and ‘sharenting’ quality of life 25, 129–131, 136–138, 188, 197, 221, 288, 381, 402, 411, 465–466, 473–476, 666–667, 675 radical listening 673–674 regular school see mainstream school right-to-life see abortion safety: amongst adolescents 603, 618; amongst deaf affinity groups 537, 543; features of assistive technology 424; nurturing children’s 174, 257; policy response 148, 444; right to 649–650; young people’s perspectives 653–658 Salamanca Statement 194, 483, 503, 550, 632 screening see prenatal screening secondary school 102, 403; supporting transitions to 608–611; transitions to 600–608 segregated education see special education sex education see adolescents, and sex education sexuality and stigma 626; see also adolescents, and sexuality sexual rights and World Health Organisation (WHO) 618; see also autonomy, and sexual rights; best interests, and sexual rights sign language 266, 282–283, 383, 514, 637, 642; see also deaf children; deaf education social assistance see social protection social inclusion 18–21, 28–31, 42, 64, 156, 311–312, 599–560; see also friendship/s; inclusion social justice 79, 314, 489; see also deaf children social media 249; see also parent/s, and ‘sharenting’ social model and participatory methods 80; critical considerations of 634–635; perspective 6, 42–43, 346, 560; and

professional practice 381, 585; and renewed protectionism 40–43; and the UN Convention on the Rights of Persons with Disabilities (CRPD) 48–51; and Universal Design for Learning (UDL) 485–486; vs. medicalisation 77–78, 346, 378–380; see also human rights model, and social model social protection 98, 102, 131–132, 135, 147–149; in South Africa 150–151, 157–158 social relational model 6, 118–125, 152–153, 265–267, 272–273, 332, 503 special education 8, 18, 24–25, 28–31, 101, 248, 545, 550, 634–644, 670; and stigma 401, 483–486, 506; see also [in contrast to] inclusion, in education; inclusive education special educational need/s 239, 505–506, 521–532 stigma/tisation 65, 111, 117, 137–138, 350; ‘courtesy’ 669; and teaching practices 605; see also abortion, and stigma; assistive technology, and stigma; de-stigmatisation; healthcare, and stigma; special education, and stigma substituted decision-making 229 supported decision-making 215–216, 222, 229 Supreme Court and US abortion laws 341–345; Brazilian 508, 514 surrogacy: defining 357–359; and the disabled foetus 357–359, 361; see also case law, and surrogacy; surrogacy surrogate mother relationship between mother and foetus 358–359; contested rights 368; contracts 361; screening process 358; see also surrogacy symbolic communication 266–268, 273 teenagers see adolescents terminal illness see end-of-life termination see abortion theory of mind 540 transgender see autism transitions to adulthood 30, 102 UN Convention on the Rights of the Child (CRC): (Art.3) 42, 44, 370, 618; (Art.6) 370; (Art.8) 370; (Art.9) 367; (Art.12) 5, 20, 25, 42, 46, 74, 124, 188,

684

Index 209–210, 213, 215, 227–232, 244, 271, 281, 291, 295, 414, 417, 444, 466, 468, 555, 618; (Art.13) 169–170, 183–184, 244, 468; (Art.16) 619; (Art.19) 20, 459; (Art.23) 17, 21, 73, 121–122, 148, 270, 305, 411, 468, 473, 520, 599, 632; (Art.24) 230, 625; (Art.28) 48, 530; (Art.29) 48; (Art.31) 21, 555, 577–578, 583 UN Convention on the Rights of Persons with Disabilities (CRPD): (Art.1) 121, 308, 325, 327, 332; (Art.2) 271, 284, 308, 539; (Art.3) 18, 20, 57, 63, 123, 423; (Art.4) 24, 95, 119, 122–123, 141, 231, 325–326, 330, 332, 369, 418, 425, 441; (Art.5) 19, 322, 330, 369; (Art.7) 4–5, 57–65, 69–70, 74, 93, 121–122, 124, 149, 214, 222, 230, 244, 271, 283, 291, 308–309, 381–382, 439–440, 443–444, 472, 555, 619; (Art.8) 23, 330, 369; (Art.9) 123, 271, 539; (Art.10) 321–325, 327, 370; (Art.12) 49–50; (Art.15) 123; (Art.16) 20, 65, 123; (Art.18) 4, 23; (Art.19) 19, 104, 123; (Art.20) 411, 419, 421; (Art.21) 169, 271, 539, 555; (Art.22) 453; (Art.23) 4, 21, 60, 99, 100–101, 403, 503–504, 520; (Art.24) 57, 60, 101, 271–272; (Art.25) 231, 618, 625; (Art.28) 102, 131, 149; (Art.30) 21, 97, 99–100, 104–105, 539, 555–556, 578; (Art.32) 425, 446; multiple 84, 98, 440–441 Universal Declaration of Human Rights (Art.12) 270; (Art.19) 169, 270; (Art.24) 270; (Art.25) 4; (Art.26) 48

universal design 506, 512; and captioning 542; and the environment 433; in the UN CRPD 119, 420, 609 Universal Design for Learning (UDL) 119, 125, 403, 506, 512; key principles 485–486; parental awareness of 493; see also social model, and Universal Design for Learning (UDL) user-centred design child-centred 95, 183, 414, 417–419, 422–427, 439, 442–444, 562; family-centred 76–478; studentcentred 403, 492 Vienna Convention on the Law of Treaties 321 VIPER Project 79–87; see also disabled young researchers wheelchair and accessibility 193, 196, 381; attitudinal barriers towards 37, 409; as enabling tool 37, 380, 432–438; and paediatric mobility 420–448; see also assistive technology World Health Organisation (WHO) abortion statistics 323; DSM-V 117; guideline development 236; impairment statistics 17, 142, 282; see also assistive technology, and World Health Organisation (WHO); sexual rights, and World Health Organisation (WHO) young researchers and co-production 653–654; putting values into practice 81–83; theoretical underpinnings 80–81; in VIPER project 79–87 youth advisory board 209, 219, 223

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