Disability and International Development: A Guide for Students and Practitioners 9781032187488, 9781032187471, 9781003256038

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Praise for the frst edition

“Disability and International Development is a major contribution towards making the human rights of persons with disabilities, especially the right to be included in international cooperation, a reality. Cobley has provided a work that provides both a critical reading of disability and development theory and is immediately applicable in the concrete work of policymaking and programme implementation.” —Stephen Meyers, Assistant Professor, Dept. of Law, Society and Justice/ Jackson School of International Studies, University of Washington, USA “David Cobley has written an excellent introductory textbook on disability and international development that provides mandatory reading for all students studying development studies and disability studies. It positively combines a very good academic grounding in this ever-expanding feld with excellent case studies that illustrate the practicalities of living with a disability in developing countries.” —Raymond Lang, Senior Research Fellow, Leonard Cheshire Disability and Inclusive Development Centre, University College London, UK “This book provides a great tool to generate interdisciplinary dialogue regarding the relevance of disability across sectors for inclusive, sustainable development. For all students, academics and researchers, the book tackles terminology and theories that inform approaches to inclusive policies and programmes. It addresses the complexity of service provision across sectors, which demonstrates the multiple transitions experienced by persons with disabilities and their families.” —Theresa Lorenzo, Professor and Programme Convenor for Disability Studies Doctoral Programme, University of Cape Town, South Africa Excerpt of review in Disability and Society, Routledge “[A]n excellent introduction to the topic especially for those familiar with only one of the felds concerned: disability or development. This book is the perfect launch pad for students and practitioners who work in only one of

the felds and would like to work in, or promote, disability inclusive development. Cobley brings together various literatures from disability studies and covers a wide range of topics, ranging from western disability models to international and regional treaties governing disability rights, health, education, employment, disabled people’s organisations (DPOs) and the disability movement, the disability–poverty nexus, and also less-covered topics like disasters. It ends with a very important subject: researching disability and the importance of enabling methods. Throughout the book, the author cites examples from diferent parts of the world, including Asia, Africa, the Americas, as well as Western countries. The book does what it sets out to do and what it claims to do in the title: it guides students and early practitioners by giving a general overview of the salient aspects of disability in development.” —Lara Bezzina, Independent Researcher, Malta

Disability and International Development

Disability and International Development provides a comprehensive overview of the key themes in the feld of disability and development, including issues around identity, poverty, disability rights, education, health, livelihoods, disaster recovery and approaches to researching disability. As disability becomes increasingly prominent within the international development agenda, the need for governments and development actors to have a basic understanding of disability issues, as they seek to support disabled people to access their rights to full participation in society, has never been more acute. Drawing on a range of examples taken from around the world, this book introduces readers to the key topics and theories surrounding disability and development. The second edition of this popular textbook includes increased coverage of environmental accessibility, intersectionality, and refections on the disproportionate impact of the COVID-19 pandemic on disabled people and the prospects for change in a post-pandemic environment. Written in an accessible and engaging style to suit both students and practitioners, the book includes a wide range of refection exercises, discussion questions and further reading suggestions, making it the perfect introduction to disability and international development. David Cobley is Lecturer in Disability and Development, University of Birmingham, UK.

Rethinking Development

Rethinking Development ofers accessible and thought-provoking overviews of contemporary topics in international development and aid. Providing original empirical and analytical insights, the books in this series push thinking in new directions by challenging current conceptualizations and developing new ones. This is a dynamic and inspiring series for all those engaged with today’s debates surrounding development issues, whether they be students, scholars, policy makers and practitioners internationally. These interdisciplinary books provide an invaluable resource for discussion in advanced undergraduate and postgraduate courses in development studies as well as in anthropology, economics, politics, geography, media studies and sociology. Development with Dignity Self-determination, Localization, and the End to Poverty Tom G. Palmer and Matt Warner Arts and Culture in Global Development Practice Expression, Identity and Empowerment Edited by Ann Holt and Cindy Maguire COVID-19 and Foreign Aid Nationalism and Global Development in a New World Order Edited by Viktor Jakupec, Max Kelly and Michael de Percy Critical Approaches to Heritage for Development Edited by Charlotte Cross and John Giblin Disability and International Development A Guide for Students and Practitioners David Cobley For more information about this series, please visit: www.routledge.com/ Rethinking-Development/book-series/RDVPT

Disability and International Development A Guide for Students and Practitioners

David Cobley

Second Edition

Designed cover image: FG Trade Second edition 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 David Cobley The right of David Cobley to be identifed as author of this work has been asserted in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988. All rights reserved. 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. Trademark notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identifcation and explanation without intent to infringe. First edition published by Routledge 2018 British Library Cataloguing-in-Publication Data A catalogue record for this book is available from the British Library ISBN: 978-1-032-18748-8 (hbk) ISBN: 978-1-032-18747-1 pbk) ISBN: 978-1-003-25603-8 (ebk) DOI: 10.4324/9781003256038 Typeset in Sabon by Apex CoVantage, LLC

For Joanna, Benjamin and Jason

Contents

List of fgures, tables, boxes and case studies Foreword Preface Acknowledgements List of abbreviations 1 Introduction Terminology 2 Book structure and chapter summaries 4 Chapter 2: understanding, defning and measuring disability 4 Chapter 3: disability, identity and shared experiences of poverty 4 Chapter 4: international agreements on disability 5 Chapter 5: disabled people’s organisations and the international disability rights movement 5 Chapter 6: environmental accessibility 6 Chapter 7: disability, health and rehabilitation 6 Chapter 8: access to education 6 Chapter 9: pathways to economic participation 7 Chapter 10: disability and disasters 7 Chapter 11: disability and the COVID-19 pandemic 8 Chapter 12: researching disability 8 2 Understanding, defning and measuring disability Individual models of disability 10 Religious model 11 Welfare model 11 Medical model 12 Social model of disability 13

xvii xix xxii xxiii xxiv 1

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Contents Social model debates 15 The social model and the Global South 17 Human rights model 18 Bio-psycho-social model 20 Measuring disability 23 Measuring disability using the ICF 24 Summary of key points 26 Discussion questions 27 Suggested further reading 27

3 Disability, identity and shared experiences of poverty Disability models and social identity 33 Impairment and identity 34 Disability and intersectionality 35 Intersectional studies on disability 35 Cultural context 37 Shared experiences of poverty 41 Disability and poverty in the Global South 42 Disability and development gap 46 Capability and the conversion handicap 46 Social protection 47 Summary of key points 48 Discussion questions 49 Suggested further reading 49

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4 International agreements on disability Universal Declaration of Human Rights (1948) 55 United Nations Declaration on the Rights of Mentally Retarded Persons (1971) 56 United Nations Declaration on the Rights of Disabled Persons (1975) 56 World Programme of Action (WPA) (1982) 56 United Nations Standard Rules (1993) 57 Copenhagen Declaration on Social Development (1995) 58 Ottawa Treaty (1997) 58 Millennium Declaration (2000) 59 Sapporo Declaration (2002) 60 United Nations Convention on the Rights of Persons with Disabilities (CRPD) (2006) 61 Optional protocol 64 CRPD implementation barriers 64 Lack of adequate data 64

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Lack of political will 65 Weak governance structures 65 Lack of DPO capacity 66 Charity outlook 66 Negative attitudes, prejudice and stigma 66 United Nations Partnership on the Rights of Persons with Disabilities (UNPRPD) (2011) 67 Addis Ababa Financing Agenda (2015) 67 2030 Agenda for Sustainable Development 68 Regional agreements 71 Regional decades 71 Inter-American Convention for the Elimination of All Forms of Discrimination Against Persons With Disabilities (1999) 72 Protocol to the African Charter on Human and People’s Rights on the Rights of Persons with Disabilities in Africa (2018) 72 Summary of key points 72 Discussion questions 73 Suggested further reading 73 5 Disabled People’s Organisations and the international disability rights movement The independent living movement 79 Disabled People’s International and the International Disability Movement 80 Disabled people’s organisations (DPOs) 82 Challenges facing DPOs 83 Resource constraints 84 Conficting priorities 85 Representation 86 Confict and fragmentation 87 Political infuence 88 The rights-based approach in Southern contexts 88 Disability mainstreaming and the twin-track approach 90 Summary of key points 95 Discussion questions 96 Suggested further reading 96 6 Environmental accessibility Societal barriers 100 Physical barriers 101

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Contents Institutional barriers 102 Attitudinal barriers 102 Intersecting barriers 103 Accessibility in the CRPD 104 Reasonable accommodation 106 The role of disabled people and Disabled People’s Organisations (DPOs) 107 Legislation and implementation 107 Universal Design (UD) 109 New Urban Agenda 112 Universal design and the ICF 113 The role of assistive technology 114 ICT, the Information Society and the digital divide 115 Standards and benchmarking 117 Universal design in the feld of ICT 119 Summary of key points 119 Discussion questions 120 Suggested further reading 120

7 Disability, health and rehabilitation Health and rehabilitation in the CRPD 125 Disability and health 126 Health risk factors 127 Exposure to violence and abuse 127 Disability and rehabilitation 128 Rehabilitation and the ICF 129 Barriers to health and rehabilitation 131 Accessibility 131 Improving accessibility 132 Afordability 133 Addressing cost barriers 133 Availability 134 Improving coverage 135 Quality 136 Raising standards 137 Access to sexual and reproductive health (SRH) services 138 Community-based rehabilitation (CBR) 140 The CBR matrix 143 CBR issues and challenges 146 Summary of key points 148 Discussion questions 149 Suggested further reading 149

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Contents 8 Access to education Disability, education and poverty 156 Special education 157 The future role of special schools 160 Integrated education 160 Inclusive education 161 International agreements on disability and education 163 United Nations Convention on the Rights of the Child (CRC) 1989 163 Jomtien Conference, 1990 163 Salamanca Conference, 1994 164 Millennium Development Goals (MDGs), 2000 164 World Education Forum for Action, Dakar, 2000 164 EFA Flagship on the Right to Education for Persons with Disabilities, 2004 165 United Nations Convention on the Rights of Persons with Disabilities (CRPD), 2006 165 2030 Agenda for Sustainable Development 165 Inclusive education in practice 167 Inaccessible schools 167 Improving accessibility 167 School resources 168 Overcoming resource constraints 168 Rigid teaching curricula and methods 170 Child-to-child approach 170 Discriminatory attitudes 172 Raising disability awareness 172 Violence and bullying 173 Addressing bullying and violence within schools 175 Summary of key points 176 Discussion questions 177 Suggested further reading 177 9

Pathways to economic participation Relevant international agreements 184 ILO Employment (Transition from War to Peace) Recommendation No.71, 1944. 184 ILO Recommendation No. 59, 1955 184 ILO Convention No. 159, 1983 185 ILO Code of Practice for Managing Disability in the Workplace, 2001 185

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Contents UN Convention on the Rights of Persons with Disabilities (CRPD), 2006 185 2030 Agenda for Sustainable Development 186 Environmental factors 187 Institutional processes 187 Attitudes and beliefs 188 Local economy 188 Disability sector 190 Family support 190 Vocational skills development 191 Segregated approaches 193 Mainstream approaches 196 Apprenticeships 197 Waged employment 197 Legislation and afrmative action 198 Non-obligatory measures 199 Business case 199 Job placement 200 Self-directed employment 201 Access to capital 202 Group enterprises 203 Business development support (BDS) 204 Summary of key points 205 Discussion questions 206 Suggested further reading 206

10 Disability and disasters Impact of disasters on disabled people 212 Intersectional discrimination 213 Poverty impacts 213 Impairment-related impacts 213 The disaster management cycle 214 Disaster preparation 215 Inadequate data 215 Early warning and evacuation 216 Poverty and isolation 216 Disaster response 216 Blanket approaches 216 Displacement 217 Temporary shelters and camps 217 Disaster recovery 220 A time of opportunity 221

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Disaster mitigation 221 Role of DPOs in disaster management processes 223 Strengthening DPOs 224 Peacekeeping and reconciliation 226 International disaster management frameworks, standards and guidance documents 226 United Nations Convention on the Rights of Persons with Disabilities (CRPD) (2006) 227 Sphere standards 227 United Nations High Commissioner for Refugees (UNHCR) (2011) 228 Sendai Framework (2015) 228 International Federation of the Red Cross and Red Crescent Societies (IFRC) (2015) 228 Charter on Inclusion of Persons with Disabilities in Humanitarian Action (2016) 229 IASC Guidelines: Inclusion of Persons with Disabilities in Humanitarian Action (2019) 229 Summary of key points 229 Discussion questions 230 Suggested further reading 230 11 Disability and the COVID-19 pandemic Impact of COVID-19 237 Loss of community support 237 Access to information 238 Access to health and rehabilitation 239 Economic stresses 239 Exclusion from education 240 Institutional living 241 Intersectional discrimination 242 Difering experiences by impairment type 244 Disability-inclusive responses 245 Accessible information 246 Inclusive health responses 246 Social protection 247 Inclusive education responses 247 Inclusive employment responses 248 Community support 248 Supporting disabled people living in institutions 249 Consultation and collaboration 249 Summary of key points 253

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Contents Discussion questions 253 Suggested further reading 253

12 Researching disability Historical impact of disability research 257 Participatory research 260 Participatory Rural Appraisal 261 Participatory action research 261 Putting participation into practice 263 Emancipatory research 265 Putting emancipatory research into practice 267 Reciprocity, gain and empowerment 269 Summary of key points 271 Discussion questions 272 Suggested further reading 272 Index

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Figures, tables, boxes and case studies

Figures 2.1 The ICF 3.1 The vicious cycle of poverty and disability 3.2 The relationship between the characteristics of poverty and disability 5.1 A twin-track approach to disability and development 6.1 The wall of barriers 7.1 CBR stakeholder linkages 7.2 The CBR matrix 8.1 Three strategic approaches to school education 8.2 Conceptual framework of school violence and bullying 10.1 The disaster management cycle

20 44 45 94 101 142 143 156 174 214

Tables 4.1 Timeline of international agreements and events 4.2 Human rights treaties protecting the rights of vulnerable groups 4.3 Disability in the SDGs 12.1 Individual versus social model as a starting point for research

54 61 69 260

Boxes 2.1 4.1 4.2 4.3 4.4 5.1 5.2 5.3

Washington Group Short Set of Questions The Millennium Development Goals Excerpt from the Sapporo Declaration Disability rights covered by the CRPD CRPD General Principles (Article 3) Core CIL services Typical DPO roles Recognition of DPOs in the CRPD

24 59 60 62 62 79 83 84

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Figures, tables, boxes and case studies

5.4 Best practice criteria for mainstreaming disability initiatives 6.1 CRPD, Article 9 – Accessibility 6.2 Original principles of Universal Design 6.3 Eight goals of Universal Design 6.4 Basic principles of WCAG 2.1 7.1 Health and rehabilitation in the CRPD 8.1 Three-point justifcation for inclusive education 8.2 The nine components of the whole education approach to prevent and address bullying and cyberbullying 9.1 Formal and informal sectors 9.2 Vocational skill types 12.1 Research gaps identifed in the World Report on Disability 12.2 Checklist for facilitating meaningful participation 12.3 Six core principles of emancipatory research

91 105 110 111 118 125 162 175 189 192 256 263 266

Case studies 3.1 Discrimination against disability as a cause of impoverishment in Bangladesh 5.1 Life Haven 5.2 Self-help groups in India 5.3 Mainstreaming in East Africa 6.1 Improving accessibility in Malaysia 7.1 Using the ICF to guide a rehabilitation assessment 7.2 Preventing HIV/AIDS among young people with disabilities in Africa 7.3 The Meru North District Disability Centre 8.1 Early years education in Dharavi, Mumbai 8.2 Child-to-child approach in Mpika, Zambia 9.1 Technical Training Institute and Computer Training Centre in Bengaluru 9.2 Brian Resource Centre in Nairobi 9.3 Employability Jobs Fairs in Chennai 9.4 Business cooperative in the Philippines 10.1 A model project: regular visits by disability workers in Nepal 10.2 Disability-inclusive disaster risk management (DRM) in Vietnam 10.3 Ageing and disability focal points in the Philippines 11.1 DPO response to the COVID-19 pandemic in Uganda 12.1 Research dilemma in the Philippines 12.2 Reciprocity, gain and empowerment

42 80 89 93 108 130 135 144 169 171 193 195 200 204 219 222 225 250 264 270

Foreword

Once, disability was not a high-profle issue in international development. But things are changing. Whereas it was not mentioned in the Millennium Development Goals, it is specifcally mentioned in the Sustainable Development Goals, for example, Goal 4 on inclusive and equitable education, Goal 8 on sustained, inclusive and sustainable economic growth, Goal 10 on reduction of inequality, Goal 11 on inclusive settlements and accessible transport and Goal 17 on data and monitoring. At the time of writing, 185 countries have ratifed the Convention on the Rights of Persons with Disabilities, which sets out everything that needs to be done to promote, protect and ensure the rights and freedoms of all persons with disabilities. Development cannot be achieved without inclusion of persons with disabilities, who make up 15 per cent of the population and neither can sustainability. This shift has largely been down to disabled people themselves. Not just in the developed world but also across the Global South, disability rights movements have campaigned for access, inclusion and human rights. In my previous work for the WHO, I was very struck by how efectively the International Disability Alliance mobilised the representative networks of self-organised groups and how they worked together for the greater good of their community. This growth of human rights-based organisations, under the banner of ‘nothing about us, without us’, has also had an impact on traditional NGOs working in this area. The voice of disabled people has been heard louder than ever. But it is important to remember that fewer than 10 per cent of disabled people are members of Organisations of Persons with Disabilities (OPDs). An accessible introduction to these issues of disability and international development is long overdue, so I really welcome this excellent primer by David Cobley, now substantially revised. Having worked in the feld as well as knowing the academic literature, he is an excellent guide, not just for students but also for development workers who want to understand the key issues in working to promote the human rights of disabled people. I have found it very useful to have access to this clear and thorough introduction. I welcome the very relevant additions he has made in this second edition, for example, discussing social protection or violence and abuse.

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Foreword

In welcoming this book, I  want to stress two issues. One is clear from the data: although disabled people in developing countries experience multidimensional poverty and exclusion, it is sometimes not much worse than that experienced by non-disabled people. Extreme poverty is very equalising. The household is the unit of production, and everyone contributes. But when a country moves ahead on the path to development, it is likely that disabled people will lose out. Non-disabled people beneft from greater availability of wage labour and facilities such as education and healthcare. But disabled people may be left behind because it is harder for them to get jobs in the formal economy and travel to where the facilities are located. The people who supported them previously – children and women – may become incorporated in school and work. This trajectory echoes what happened to disabled people during the Industrial Revolution in developed countries. But now, with our greater knowledge and commitment to human rights, it is imperative that we ensure it does not happen again because we have disability-inclusive development, not the disabling kind. Second, when it comes to disability, we are talking about families, as much as individuals. Think of the parents of a disabled child. Think of the siblings or spouse of a disabled adult. Think of the children of an older person who becomes disabled. In my research with successful disabled people in southern Africa, over and again the respondent will talk of the mother who insisted he got a proper education, or the siblings who carried him fve kilometres to school every day, or the uncle who helped him start his business. The individualistic emphasis of developed countries can be  very diferent from the more communitarian, family based cultures of the Global South. However, families barely feature in the Convention on the Rights of Persons with Disabilities – only in the preamble and in Article 23. This may be because many activists remember families being overbearing and controlling, which is often the case. But just as often, families are the essential allies and supporters of disabled people achieving inclusion, and conversely, when disabled people are excluded, then the whole family can sufer. My own research shows that disabled people can be successful. I knew this already because of the many leaders and activists I have met from the Global South. In my project, I have interviewed civil servants and lawyers and teachers and farmers and shopkeepers and rice traders in four African countries. The key to their success, often, has been education. These are intelligent and resourceful people. But many times, they have also beneftted from a benefactor, or an NGO, or a DPO, or a government scholarship. Their stories show that disabled people are a good investment. Not just they, but also their siblings and their children also beneft from their success. My participants have overcome barriers after much striving. If only we could dismantle those barriers, it’s clear that many more disabled people will achieve success on an equal basis to others. I hope this book will help the practitioners of today and tomorrow to understand and work to remove barriers to inclusion and achievement of

Foreword

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disabled people in the countries of the South and of the North. I hope readers will end up with a commitment to hearing the voices of disabled people and to work with us in partnership. That’s the way to ensure that the human rights of persons with disabilities are realised. Tom Shakespeare Professor of Disability Research London School of Hygiene and Tropical Medicine

Preface

This book, now in its second edition, aims to provide readers with an overview of key themes within the emerging feld of disability and international development, encouraging them to refect on how they understand and respond to disability. Since the frst edition was published in 2018, disabled people around the world have faced many new challenges arising due to the COVID-19 pandemic and, in many cases, the failure of governments to adequately respond to their needs and priorities. This provides a stark reminder that, despite all the progress that has been made in terms of raising the profle of disability as a human rights issue and a development priority, there is still a long way to go. This edition includes a new chapter exploring the experiences of disabled people during the pandemic and considering how disability-inclusive recovery processes might help to foster more inclusive societies as the world emerges from this unprecedented crisis. There is also a new chapter on environmental accessibility, a crucial disability issue since accessibility is a prerequisite for the enjoyment of all participation rights. My interest in disability arises from many years within the UK social care sector, during which time I worked as both a carer and a manager in a variety of settings, often providing ‘hands-on’ support to disabled people and gaining an insight into their lived experiences. In more recent times, I have broadened my knowledge on disability in the global context by studying, researching and teaching on the topic within the International Development Department at the University of Birmingham. Through my teaching, I became increasingly aware of the need for an introductory textbook-style book, exploring key topics and relevant theory, written in a style that is easily accessible to students, practitioners and development planners. This book, which has been thoroughly revised as well as extended to incorporate the two new chapters referred to earlier, hopefully goes some way towards addressing that need.

Acknowledgements

The support and assistance of many people has helped to make this book possible. Firstly, I would like to thank Helena Hurd, who prompted me to write the book in the frst place and then encouraged me to embark on this second edition. I am indebted to the editorial team at Routledge, especially Rosie Anderson, and to Gerard Genevois for assisting with the reproduction of illustrations. The anonymous external reviewers provided valuable and detailed feedback on the initial proposal for this second edition, which was a great help in terms of shaping the way forward. I am grateful to Tom Shakespeare, a leader in the feld of disability studies and a tireless disability rights advocate, for kindly agreeing to update the foreword that he wrote for the frst edition. My wife, Joanna, has been a constant source of encouragement and support, and also I must thank my two young sons, Benjamin and Jason, for allowing me the time to work on the manuscript! Finally, I would like to acknowledge the support of my tremendous colleagues and students in the International Development Department at the University of Birmingham.

Abbreviations

ACHPR

African Charter on Human and People’s Rights on the Rights of Persons with Disabilities in Africa ACPF Africa Child Policy Forum ADHD Attention-Defcit Hyperactivity Disorder AfriNEAD African Network for Evidence-to-Action on Disability AIHW Australian Institute of Health and Welfare APDK Association for the Physically Disabled of Kenya ASD Autistic Spectrum Disorder (ASD) AT Assistive Technology BDDG Bond Disability and Development Group BDS Business Development Support CBM Christofel Blinden Mission CBR Community-Based Rehabilitation CDD Centre for Disability in Development (Bangladesh) CDPO Cambodian Disabled People’s Organisation CIL Centre for Independent Living COVID-19 Coronavirus Disease 2019 COVID-19 DRM COVID-19 Disability Rights Monitor CPAN Chronic Poverty Advisory Network CSID Centre for Services and Information on Disability in Development (Bangladesh) CRPD Convention on the Rights of Persons With Disabilities CV Curriculum Vitae DARE Digital Accessibility Rights Index DEC Disasters Emergency Committee DFID Department for International Development (United Kingdom) DHF Danish Association of the Physically Disabled DPI Disabled People’s International DPO Disabled People’s Organisation DRM Disaster Risk Management DSPD Division for Social Policy Development EFA Education for All

Abbreviations EIDD ESCAP GDP GPDD HCESC HIV/AIDS HRW IAEG-SDGs IASC ICBL ICED ICF ICIDH ICCPR ICESCR ICT IDA IDC IDDC IDEA IDM IFRC ILM ILO Ksh LGBTI LMICs MADIPHA MDG NAB NCPEDP NDRRMC NGO NUDIPU OAS OECD

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European Institute for Design and Disability Economic and Social Commission of Asia and the Pacifc Gross Domestic Product Global Partnership on Disability and Development House of Commons Education and Skills Committee Human Immunodefciency Virus Infection and Acquired Immune Defciency Syndrome Human Rights Watch Inter-Agency and Expert Group on SDG Indicators Inter-Agency Standing Committee International Campaign to Ban Landmines International Centre for Evidence in Disability International Classifcation of Functioning, Disability and Health International Classifcation of Impairments, Disabilities and Handicaps International Covenant on Civil and Political Rights International Covenant on Economic, Social and Cultural Rights Information and Communications Technology International Disability Alliance International Disability Caucus International Disability and Development Consortium Center for Inclusive Design and Environmental Access International Disability Movement International Federation of Red Cross and Red Crescent Societies Independent Living Movement International Labour Organisation Kenyan Shilling Lesbian, Gay, Bisexual, Transgender and Intersex Low- and Middle-Income Countries Masaka Association of Persons with Disabilities living with HIV and AIDS Millennium Development Goal National Institute for the Blind (India) National Centre for the Promotion of Employment of Disabled People National Disaster Risk Reduction and Management Council Non-Governmental Organisations National Union of Disabled Persons of Uganda Organisation of American States Organisation for Economic Co-Operation and Development

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Abbreviations

OHCHR PAR PLA PRA RNUD ROSCA SDG SEN SHG SRH TTI UD UDHR UIS UK UN UNAIDS UNDESA UNESCO UNHCR UNICEF UPE UNPFA UPIAS US W3C WCAG WDMC WGDS WG-SS WFD WHO WPA WPAC WRC WSIS

Ofce of the High Commission on Human Rights Participatory Action Research Participatory Learning and Action Participatory Rural Appraisal Rwanda National Union of the Deaf Rotating Savings and Credit Association (Uganda) Sustainable Development Goal Special Educational Needs Self-Help Group Sexual and Reproductive Health Technical Training Institute (Bengaluru) Universal Design Universal Declaration of Human Rights UNESCO Institute for Statistics United Kingdom United Nations Joint United Nations Programme on HIV/AIDS United Nations Department of Economic and Social Afairs United Nations Educational, Scientifc and Cultural Organisation United Nations High Commissioner for Refugees United Nations International Children’s Emergency Fund Universal Primary Education United Nations Population Fund Union of the Physically Impaired Against Segregation United States World Wide Web Consortium Web Content Accessibility Guidelines Ward Disaster Management Committees (Bangladesh) Washington Group on Disability Statistics Washington Group Short Set of Questions World Federation for the Deaf World Health Organization World Programme of Action Concerning Disabled Persons World Policy Analysis Center Women’s Refugee Commission World Summit on the Information Society

1

Introduction

Disability has long been a neglected topic within the feld of international development studies. However, with the growth of a coordinated and infuential disability movement, together with increased international recognition of disability as a human rights issue, the need to respond to disability is now emerging as a development priority that can no longer be ignored. The most obvious indication of this was the adoption in 2006 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), widely heralded as a landmark achievement for the disability movement and a ‘game-changer’ in terms of raising awareness of disability rights on the international stage. The CRPD has now been ratifed by the vast majority of nation states, signifying a near-global consensus on the need to remove the discriminatory barriers that hinder the full participation of disabled people in society. Governments around the world have followed up on this commitment by introducing a plethora of legislative and policy measures designed to foster more disability-inclusive societies. More recently, the 2030 Agenda for Sustainable Development, which boldly promises to ‘leave no one behind’, highlights the rising profle of disability through several explicit references, in stark contrast to the Millennium Framework’s silence on the matter. Further evidence of the increased prominence of disability within mainstream development circles can be found in the Sendai Framework (UN, 2015),1 adopted at the 2015 World Disasters Conference as a blueprint to guide disaster risk reduction and management processes until 2030. Crucially, this framework goes beyond recognising the vulnerability of disabled people when disasters occur to highlighting their potential to serve as active agents of disaster planning and recovery. Despite these encouraging signs, many disabled people around the world continue to experience blatant discrimination, frequently reinforced by social exclusion and economic deprivation. Evidence of this can be found in the frst ever World Report on Disability, jointly published by the WHO and World Bank in 2011, which estimated that disabled people, as a group, constitute around 15 per cent of the world’s population, with the vast majority of them living in the Global South. The Report draws on evidence from around 70 countries to highlight the close links between disability DOI: 10.4324/9781003256038-1

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Introduction

and poverty, with disabled people often subject to stigma, disrespect, prejudice and even violence, as well as being particularly disadvantaged in terms of access to education, healthcare, employment and political participation. A more recent UN Flagship Report (UNDESA, 2018) on progress that has been made towards achieving the Sustainable Development Goals, in relation to disability, reinforces this picture. While acknowledging progress that had been made in some areas, the report confrmed that disabled people continued to experience ‘numerous barriers to full inclusion and participation in the life of their communities’ (p. 1). A growing body of evidence has emerged since the start of the COVID19 pandemic to suggest that these inequalities have deepened even further. One global survey (COVID-19 DRM, 2020), which drew responses from over 2,000 participants (including disabled people and other stakeholders) in 134 countries, reveals how the breakdown of essential services and support structures has led to a wide range of socio-economic deprivations and numerous injustices.2 In many cases, ofcial responses to the pandemic have clearly failed to take account of disabled people and to aford them adequate protection (Mehrotra and Soldatic, 2021). However, COVID-19 has also triggered a growth in digital opportunities that have the potential to transform the lives of disabled people in a positive way. It is vital that these opportunities are grasped as we emerge from the pandemic, so that we do not return to a pre-pandemic world in which disabled people face barriers to virtually all aspects of societal inclusion (Shakespeare et al., 2021). It is only by furthering our understanding of the issues and challenges facing disabled people on a daily basis that promises of a more inclusive society, in which disabled people are able to participate on an equal basis with others, can become a meaningful reality rather than empty rhetoric. This textbook aims to contribute to that process by providing a broad overview of various disability-related themes within this emerging feld, drawing on an ever-growing body of empirical research that increasingly incorporates the perspectives of disabled people themselves.

Terminology Disability is a complex phenomenon and its meaning is widely contested.3 The lack of consensus on how disability should be defned is refected in the CRPD, which describes disability as arising from ‘the interaction between persons with impairments and attitudinal and environmental barriers’ (United Nations, 2006, preamble (e)) but does not actually say what it is. This conceptual confusion is further refected in disagreements among scholars within the feld of disability studies over terminology. The issue is one of some signifcance, given that choices of terminology can refect the ways in which disability is understood and how disabled people are perceived. Historically, stigmatising and devaluing terms such as ‘invalid’, ‘cripple’ or ‘retarded’ have been commonplace, reinforcing notions of disabled

Introduction

3

people as weak, helpless and inferior. While such terms are now widely regarded as discriminatory and inappropriate, they ‘can still remain present in all societies around the world’ (Iriarte et al., 2016, p. 8). The term ‘people/persons with disabilities’, used in the CRPD and most other recent international agreements that make reference to disability, is perhaps now the most commonly used and widely accepted. This term is an example of ‘person-frst language’, which recognises that disability is just one of many components to a person’s identity. Singal (2010) argues that the use of person-frst language is ‘extremely important in societies, predominantly of the South, where disability continues to be highly stigmatising’ (p. 417). However, many scholars prefer the term ‘disabled people’, which emphasises the role of society in creating and reinforcing disability, thus moving away from the medical model perspective in which disability arises solely from impairment. This is important from a practitioner and policymaking perspective, as it draws attention to the need to eliminate the societal causes of disability. Perhaps, the most infuential advocate of this choice of terminology was Mike Oliver (1990), a giant in the feld of disability studies, who has also argued that disability should not be viewed as an added appendage, as the term ‘people with disabilities’ might imply, but as an intrinsic part of one’s identity. While this book adopts the term ‘disabled people’, I recognise and fully respect that others will prefer person-frst terminology. My advice to students is to choose whichever of these two terminology options they feel is most suitable but to be mindful of the potential interpretations of the choice that they make. It is also important to recognise that diferent expressions may be considered appropriate in diferent languages and cultures, so it is always advisable to ascertain the terminology preferences of disabled people themselves, wherever possible, when working or researching in diferent settings. Another important terminology decision, in relation to this book, is refected in the use of North–South terminology. The Global North comprises richer countries, such as those located in western Europe and North America, that tend to dominate the global economy, while the Global South is made up of generally poorer countries that, in many cases, have historically been controlled, dominated or economically exploited by colonial powers, thus reinforcing their poverty and dependence (Meekosha, 2011). While this is perhaps a rather simplistic way of distinguishing between richer and poorer countries, I have adopted this terminology in preference to the use of terms such as ‘developed’ and ‘developing’. These now rather outdated terms tend to imply the superiority of one country over another, as well as ignoring the rather obvious fact that, in reality, all countries are ‘developing’ in one way or another. In referring to countries as part of the Global South or Global North, it is important to recognise that this does not imply homogeneity within either of these two blocs (Singal, 2010). All countries are characterised by a unique set of social, cultural, economic and

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Introduction

political conditions that shape the experiences of those living within them, including disabled people.

Book structure and chapter summaries This introductory chapter is followed by 11 further chapters, including two new chapters that have been added for this edition. All of the chapters that were included in the frst edition have been revised and updated, drawing on recent scholarships and developments in the feld. While each chapter is selfcontained, reading them sequentially will enable the reader to systematically build up an understanding of disability issues and related theoretical concepts that are frequently revisited in the chapters that follow. Each chapter includes a brief summary of key points, one or more refection exercises and a short set of discussion questions, designed to facilitate self-refection or group-based discussion among students and practitioners. The 11 chapters that follow are briefy summarised here. Chapter 2: understanding, defning and measuring disability This chapter introduces some of the main conceptual models of disability, including various individual models, the social model, the human rights model and the bio-psycho-social model, each of which refects a diferent way of understanding disability. These models are examined in terms of the perceptions and defnitions that arise from them and their implications for policy and practice in relation to disability. There is a particular emphasis on debates around the social model, which has had a transformative impact on the lives of many disabled people and exerted a powerful infuence on development policy and practice but is sometimes questioned in terms of its relevance and applicability in the global context. The chapter ends with a discussion around the problems associated with measuring disability and presents a tool known as the ‘Washington Group Short Set of Questions’ (WG-SS), underpinned by the bio-psycho-social model, which is designed to overcome some of these challenges. Chapter 3: disability, identity and shared experiences of poverty Disabled people are individuals with multiple identities rather than members of a homogeneous group. This chapter explores a wide range of factors that help to shape the identities of disabled people, both in a collective sense and individually, including difering perceptions arising from models of disability, impairment-related factors, personal circumstances, social differences and the cultural context. An intersectional lens is adopted to examine how various social identities interact with each other, often reinforcing social exclusion and marginalisation. The chapter also explores the notion of a ‘commonality of experience’ among disabled people, based on shared

Introduction

5

experiences of discrimination and poverty, especially in the Global South context. Finally, the close and complex relationship between disability and poverty is examined, drawing on a growing body of empirical evidence refecting the real-life experiences of disabled people. The fnal section, new for this edition, explores the role of social protection as a strategy for alleviating poverty among disabled people. Chapter 4: international agreements on disability The international agreements covered in this chapter refect a growing sense that disability should be treated as a human rights issue rather than as a charity issue. This paradigm shift, in terms of how disability is viewed on the international stage, was frmly reinforced through the adoption of the CRPD in 2006. This chapter starts by reviewing some signifcant international agreements that helped to pave the way for the CRPD, going right back to the 1948 Universal Declaration of Human Rights, before examining the content of the CRPD itself. This is followed by a discussion around some of the barriers to its implementation, particularly in the Global South context. The chapter also considers the extent to which the 2030 Agenda takes account of disability, as well as reviewing progress that has been made so far on achieving the Sustainable Development Goals in relation to disability. Finally, the chapter reviews some important regional agreements, which reinforce the global agreements on disability while also taking account of more localised concerns arising in diferent parts of the world. Chapter 5: disabled people’s organisations and the international disability rights movement The international disability rights movement, comprising disabled people’s organisations (DPOs) operating at the grassroots level, district networks, national umbrella organisations and global coordinating bodies such as Disabled People’s International, is one of the largest and most infuential social movements in the world today. This chapter frst examines the Independent Living Movement, which began in the United States in the 1960s, before describing the evolution of the broader disability rights movement that has been so successful in raising the profle of disability on the international stage. There is a particular focus on the key role played by DPOs within the movement and some of the challenges that they currently face. With the CRPD calling for DPOs to take a lead role in monitoring its implementation, the chapter discusses some of the dilemmas associated with the implementation of disability rights in practice, particularly where universal rights-based discourse may confict with local-level priorities. Finally, the chapter explores the concept of disability mainstreaming, a strategy designed to ensure that general development policies and programmes incorporate disability perspectives, and the closely associated twin-track

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Introduction

approach, which is often seen as a solution to the perceived limitations of mainstreaming. Chapter 6: environmental accessibility Accessibility is a key factor in determining the extent to which disabled people are able to participate in society on an equal basis with others. This chapter, new for this edition, starts by exploring the various societal barriers that combine to hinder participation and inclusion. It then goes on to consider the CRPD’s perspective on accessibility and the extent to which national legislation takes account of this. The role of universal design (UD) as a strategy for creating accessible environments is then explored, drawing attention to the potential of the ICF as a tool for supporting UD solutions. Finally, the chapter focuses on accessibility in the feld of information and communications technology (ICT), highlighting the need to bridge the digital divide so that disabled people are not excluded from the benefts of the so-called Information Society. Chapter 7: disability, health and rehabilitation Disabled people are often denied access to health and rehabilitation services, as a result of which they tend to have higher levels of unmet health needs than the general population and are more vulnerable to poverty and social exclusion (WHO and World Bank, 2011). This chapter identifes some of the health risk factors that are commonly associated with disability and then explores the evolving concept of rehabilitation. This is followed by an analysis of various issues that need to be addressed by development planners and practitioners to ensure that disabled people are able to access appropriate health and rehabilitation services, structured around the four key areas of accessibility, afordability, availability and quality. The next section, new for this edition, focuses on access to sexual and reproductive health services. This is an issue that has long been neglected, largely due to the widespread prevalence of harmful myths and stereotypes around disabled people and their need for such services (WHO, 2009). Finally, the chapter focuses on community-based rehabilitation (CBR), a term that is used to describe decentralised strategies that involve drawing on community resources to meet the health and rehabilitation needs of disabled people and to empower them to live full and active lives within their communities. Drawing on a growing body of literature in this area, CBR is explored in terms of both its impact and some of the challenges facing its implementation. Chapter 8: access to education Millions of disabled children living in the Global South do not attend school while those who do attend are frequently excluded within the classroom and

Introduction

7

less likely to complete their education than non-disabled children (UNESCO, 2015). This chapter examines three strategic approaches to facilitating the education of disabled children: special education, integrated education and inclusive education. The chapter then reviews a series of international agreements that have underpinned initiatives such as Education for All and Universal Primary Education, while increasingly encouraging governments around the world to embrace the concept of inclusive education. Finally, the chapter discusses some of the challenges associated with the implementation of inclusive education, especially in resource-poor settings of the Global South, and outlines certain innovative strategies that have helped some schools to rise to these challenges. This fnal section includes a subsection on violence and bullying, new for this edition, recognising that disabled children are exposed to a heightened risk of violence and bullying within school environments (Jones et al., 2012). Chapter 9: pathways to economic participation Economic participation is vital to reducing poverty among disabled people and supporting them to lead valued lives as productive members of society. Also, it can help to strengthen economies and foster more inclusive societies. It is widely recognised, however, that disabled people are frequently excluded from the world of work (UNDESA, 2018; WHO and World Bank, 2011). This chapter starts with a review of relevant international agreements, clearly establishing that disabled people have a right to economic participation on an equal basis with others. This is followed by a discussion around the various environmental factors that may determine the types of economic opportunities that are open to disabled people, within a given context, as well as infuencing the extent to which they are able to take advantage of these opportunities. The chapter then explores three pathways to economic participation – vocational skills development, waged employment and self-directed employment – identifying some of the barriers that hinder progress on each of these pathways and exploring various strategies designed to overcome them. Chapter 10: disability and disasters This chapter explores the often-disproportionate impact of major disasters, arising from natural hazards, human factors or a combination of both, on disabled people. The disaster management cycle, comprising the four main phases of disaster preparation, response, recovery and mitigation, is adopted as a framework to examine a range of disability issues and concerns arising before, during and after the occurrence of disasters. Recognising that humanitarian agencies frequently fail to adequately address these issues, various ways of facilitating more disability-inclusive approaches are considered, focusing particularly on the potentially vital role that DPOs can

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Introduction

play. The chapter concludes with a brief review of international frameworks and guidance documents on disaster management. These include the 2015 Sendai Framework, an international blueprint for disaster risk reduction that explicitly identifes disabled people as key partners in the disaster planning and management process. Chapter 11: disability and the COVID-19 pandemic Disabled people around the world have been among those worst afected by the COVID-19 pandemic. As well as being among those most at risk of catching the virus (WHO, 2020), they have experienced a wide range of socio-economic deprivations that have reinforced the already close relationship between disability and poverty, especially in the Global South. As the world emerges from the pandemic, however, there are opportunities to build a more inclusive world. This chapter, new for this edition, starts by reviewing a growing body of emerging evidence to analyse the impact of the pandemic on various aspects of disabled people’s lives, including access to information, health and rehabilitation services, economic participation, education and institutional living. This review also considers how disability has intersected with other social identities, such as gender, age and homelessness, leading to increased levels of discrimination and marginalisation for many disabled people. The chapter then goes on to consider a range of disability-inclusive measures that could be adopted by policymakers and service providers to ensure that disabled people are not left behind in the post-pandemic world and that responses to future pandemics are more disability-inclusive. Chapter 12: researching disability There is a pressing need for more research on disability, especially research that captures the voices of disabled people themselves, to support governments and development planners in understanding the needs and priorities of disabled people and promoting their rights to live as full members of society. This chapter frst examines concerns, often expressed by disabled people themselves, that much of the research on disability that has been carried out in the past has been disempowering and even oppressive, particularly when based on conventional research methods and underpinned by individual model perceptions of disability. The chapter then explores two particular research paradigms: participatory research and emancipatory research. Drawing on some of the key principles that are common to both of these approaches, the chapter argues that supporting the meaningful participation of disabled people, at all stages of the research process, is vital to ensuring that research agendas are more refective of their true priorities.

Introduction

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Notes 1 See Chapter 10 for a more detailed discussion on the Sendai Framework. 2 See Chapter 11 for further discussion on this survey. 3 See Chapter 2 for further discussion around the meaning of disability.

References COVID-19 DRM (Disability Rights Monitor) (2020) Disability Rights during the Pandemic. Retrieved on 21 July 2021 from www.internationaldisabilityalliance. org/sites/default/fles/disability_rights_during_the_pandemic_report_web_pdf_1.pdf Iriarte, E., McConkey, R. and McGilligan, R. (2016) ‘Disability and Human Rights: Global Perspectives’. In Iriarte, E., McConkey, R. and Gilligan, R. (Eds.) Disability and Human Rights: Global Perspectives. London: Palgrave, 1–9. Jones, L., Bellis, M.A., Wood, S., Hughes, K., McCoy, E., Eckley, L., Bates, G., Mikton, C., Shakespeare, T. and Ofcer, A. (2012) ‘Prevalence and risk of violence against children with disabilities: A systematic review and meta-analysis of observational studies’. In The Lancet 380: 899–907. Meekosha, H. (2011) ‘Decolonizing disability: Thinking and acting globally’. In Disability and Society 26(6): 667–681. Mehrotra, N. and Soldatic, K. (2021) ‘COVID-19 in South Asia: State practices, responses and the experiences of persons with disabilities within the region’. In Disability and the Global South 8(1): 1873–1879. Oliver, M. (1990) The Politics of Disablement. Basingstoke: Macmillan. Shakespeare, T., Ndagire, N. and Seketi, Q.E. (2021) ‘Triple Jeopardy; disabled people and the COVID-19 pandemic’. In The Lancet 397. Singal, N. (2010) ‘Doing disability research in a Southern context: Challenges and possibilities’. In Disability and Society 25(4): 415–426. UN (United Nations) (2006) Convention on the Rights of Persons with Disabilities and Optional Protocol. Washington, DC: United Nations. UN (United Nations) (2015) Transforming Our World: The 2030 Agenda for Sustainable Development. Washington, DC: United Nations. UNDESA (United Nations Department of Economic and Social Afairs) (2018) Disability and Development Report: Realising the SDGs, by and for Persons with Disabilities. New York: United Nations. UNESCO (United Nations Educational, Scientifc and Cultural Organisation) (2015) Education for All 2000–2015: Achievements and Challenges. EFA Global Monitoring Report 2015. Paris: UNESCO. WHO (World Health Organization) (2009) Promoting Sexual and Reproductive Health for Persons with Disabilities. WHO/UNFPA Guidance Note. Geneva: WHO. WHO (World Health Organization) (2020) Disability Considerations During the COVID-19 Outbreak. Geneva: WHO. WHO (World Health Organization) and World Bank (2011) World Report on Disability. Geneva: WHO. Retrieved on 22 October  2016 from http://whqlibdoc. who.int/publications/2011/9789240685215_eng.pdf

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Understanding, defning and measuring disability

Disability is understood, defned and measured in many diferent ways, with variations both within and between countries. Far from being only a matter of academic interest, the way in which the concept of disability is interpreted can determine how disabled people are perceived by others in society and often has a direct impact on disability policy and practice. Where disability is viewed primarily as a medical issue, for example, interventions designed to support disabled people are likely to centre on medical solutions. In contrast, where disability is thought to arise from discriminatory practices, stigmatising beliefs and negative attitudes within society, interventions are more likely to focus on promoting disability rights and advocating for societal change. This chapter presents some of the main conceptual models of disability, including various individual models, the social model, the human rights model and the bio-psycho-social model. These models are examined in terms of the perceptions and defnitions of disability that arise from them and their infuence in the global context. The chapter then moves on to consider the problem of how to measure the prevalence and extent of disability to enable policymakers and service providers to plan interventions and allocate resources efciently, as well as to facilitate international comparisons and to measure progress towards the achievement of global development targets.

Individual models of disability Individual models locate disability within the individual (Oliver, 1990), although they difer in terms of the sociocultural and historical constructions that explain how disability arises and determine how disabled people are perceived. According to Oliver (1996), however, they are all underpinned by ‘personal tragedy theory’, which views disability as ‘some terrible chance event which occurs at random to certain individuals’ (p. 32). This section examines three distinct types of individual model: the religious model, the welfare model and the medical model.

DOI: 10.4324/9781003256038-2

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Religious model In this model, disability is typically viewed as the result of divine retribution for past sins or misdemeanours committed by disabled people themselves, their relatives or their ancestors. Disabled people are held accountable for these wrongdoings and therefore considered to be deserving of their disabling impairments. This model is reinforced by spiritual principles such as ‘karma’, embraced by several religions including Hinduism and Buddhism, which relates to the future consequences of good or bad deeds, both in one’s current life and in future lives.

Disability and karma Karma guarantees retribution in the current life for unwholesome actions and thoughts in previous incarnations. From this perspective, disability is a form of repayment: the embodiment of demeritous (sic) deeds performed in past lives. (Gartrell and Hoban, 2013, p. 201)

The concept of karma originates from India, where it underpins negative perceptions of disability within general society that are often internalised by disabled people themselves and other household members (World Bank, 2009). One study involving interviews with around 70 disabled people living in the South Indian State of Karnataka found that, as a result of such beliefs, some respondents felt that they ‘had become objects of pity, derision, and should be shut away and cared for by their parents’ (Lang, 2001, p. 296). Welfare model In this model, sometimes referred to as the ‘charity model’, disability is viewed in terms of ‘sufering’. Disabled people are typically regarded as inferior, weaker or less productive members of society, dependent on the sympathy and assistance of others, who therefore represent a burden to society. Paul Hunt (1966), a pioneer of the British disability movement who lived much of his life in residential institutions, alludes to this model in his classic article, A Critical Condition, where he describes society’s perception of disabled people as ‘unfortunate, useless, diferent, oppressed and sick’ (p.  3). The welfare model has been (and still is) very infuential, especially in many countries of the Global South, where a long history of disability services

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Understanding, defning and measuring disability

being provided by charitable organisations and missionaries has often contributed to the creation of a ‘culture of dependency’ among disabled people (see, for example, Dos Santos-Zingale and McColl, 2006; Cobley, 2012). Medical model In the medical model, disability arises from mental, physical or sensory impairments that are attributed to medical causes. The model views these impairments as biological or physiological defects, which require medical treatment or rehabilitation to restore ‘normal’ functioning. This model became very prominent in the twentieth century, especially in Western societies, with the advance of medical sciences and growing knowledge of the human body and how it works. The implication is that disabled people should be supported to conform to the norms of society, largely through medical treatment and rehabilitation, rather than society itself adapting to the needs of disabled people. The medical model has attracted much criticism, particularly among disabled academics based in the Global North. Simon Brisenden (1986/1998), another stalwart of the early British disability movement, observed that the model is ‘one rooted in an undue emphasis on clinical diagnosis, the very nature of which is destined to lead to a partial and inhibiting view of the disabled individual’ (p.  173). This clinical emphasis has led to diagnostic labels being attached to people with various impairments (often referred to as ‘disabilities’) and disabled people being viewed as incapable of productive work because their bodies do not work properly (Shakespeare, 1996). Medical professionals are therefore tasked with intervening to correct functional defcits, in order to enable disabled people to cope with the demands of mainstream society. Throughout much of the twentieth century, many disabled people were regarded as unable to make a useful contribution to society and hence segregated into special institutions ‘for their own good and to stop them being a burden on others’ (Barnes and Mercer, 2003, p. 3). Historically, the medical model has had a strong infuence on ofcial defnitions of disability. In the 1970s, for example, the WHO developed the International Classifcation of Impairments, Disabilities and Handicaps (ICIDH), which defned disability in the following way:

Medical model defnition of disability Any restriction or lack (resulting from impairment) of ability to perform an activity in the manner or within the range considered normal for a human being. (Wood, 1980, p. 27)

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National legislation on disability still tends to refect this understanding of disability in many countries around the world. In the UK, for example, the 2010 Equality Act defnes disability as a physical or mental impairment which ‘has a substantial or long-term adverse efect on a person’s ability to carry out normal day-to-day activities’ (Government of UK, 2012, Section  6(1)). In the Philippines, the 1992 Republic Act 7277 (known as the Magna Carta for Disabled Persons) defnes disability even more narrowly as ‘a physical impairment that substantially limits one or more psychological, physiological or anatomical function of an individual or activities of such individual’ (National Council for Disability Afairs, 2009).

Social model of disability Increasing dissatisfaction with individual model perspectives, frequently expressed by disabled people themselves, has led to the rise of the social model of disability. This model has its origins within the British disability movement of the 1970s, when a group of disabled people, including several who had been involved in protests against institutional practices at the Le Court Cheshire Home near Southampton,1 came together to form the Union of the Physically Impaired Against Segregation (UPIAS). The Union provided an early example of an organisation of disabled people,2 which created a platform for disabled people themselves to voice their concerns and opinions rather than having them represented by others. UPIAS viewed disability in terms of social repression. This understanding of disability, as distinct from impairment, was encapsulated in the Union’s radical Fundamental Principles of Disability document, which contained the following statement:

Disability as social oppression In our view, it 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 participation in society. Disabled people are therefore an oppressed group in society. (UPIAS, 1976, pp. 3–4)

The statement goes on to draw a clear distinction between disability and impairment.

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Social model distinction between impairment and disability [T]hus we defne impairment as lacking all or part of a limb, or having a defective limb, organism or mechanism of the body and disability as the disadvantage or restriction of activity caused by a contemporary social organisation which takes little or no account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities. (UPIAS, 1976, p. 14)

This defnition, which was later widened to include sensory and intellectual impairments (Barnes, 1998), implies that society creates disability in two ways. Firstly, the structures of society, including families, communities, physical infrastructure, the economy and the political system, are not designed to fully accommodate people with certain physical and/or mental characteristics.3 Secondly, society ‘excludes’ people with impairments through discriminatory attitudes, systems and practices.4 In the early 1980s, this radical new way of conceptualising disability, encapsulated in the UPIAS document, gave rise to a feeling of optimism among disabled people that was captured by Allan Sutherland (1981): Over the last few years, a new, more uncompromising mood has been springing up among people with disabilities. Increasingly, we are jettisoning passive acceptance of our situations, taking pride in our selves and our bodies, and coming to see ourselves as disabled, if we are disabled at all, not by the idiosyncrasies of our bodies but by a society which is not prepared to cater to our needs. (p. 1) The growing feeling, among disabled people themselves, that social oppression and discrimination were the root cause of their disability was articulated in academic terms by Mike Oliver (1983) as the ‘social model of disability’, a new paradigm locating disability frmly within society rather than within the individual. Oliver attributed the ideas behind the social model to the original distinction between impairment and disability drawn in the 1976 UPIAS document, and called for a switch away from focusing on the physical limitations of particular individuals to the way the physical and social environments impose limitations on certain groups and categories of people. (1983, p. 23)

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The social model views disability, therefore, as created by the impact of environmental factors (or societal barriers) on people with impairments. In other words, disability arises from discrimination within society rather than from impairment. The clear implication is that society itself should adapt to the needs of disabled people rather than the other way around. Oliver (1990) points out that if disability is defned in social model terms, ‘disabled people will be seen as the collective victims of an uncaring or unknowing society rather than as individual victims of circumstances’ (p. 2). Social model debates While the social model has gained increasing recognition and acceptance, there have been some debates around the interpretation and application of the model. In particular, concerns have been expressed that the model’s strong focus on the disabling impact of society has led to the experience of specifc impairments being ignored, dismissed or trivialised. Shakespeare and Watson (2002) contend that some advocates of the social model have adopted a ‘strong’ version of the model, ignoring the signifcance of impairment, which is at odds with their private views: [M]ost activists concede that behind closed doors they talk about aches and pains and urinary tract infections, even while they deny any relevance of the body while they are out campaigning. Yet this inconsistency is surely wrong: if the rhetoric says one thing, while everyone behaves privately in a more complex way, then perhaps it is time to examine the rhetoric and speak more honestly. (p. 6) They go on to argue that the clear line drawn between disability and impairment in the UPIAS statement creates a dichotomy, which can oversimplify the complex relationship between the two. Moreover, they argue, denying the impact of impairment can create a risk that the need to avoid and reduce impairments may be underestimated. The separation of impairment and disability also makes less sense when you consider that impairment itself has often been produced through social processes, such as wars, colonialism, industrialisation and cultural practices (Berghs, 2014; Soldatic, 2013; Connell, 2011). It is important to emphasise that Shakespeare and Watson (2002) do stress that they ‘entirely concur with the political imperative to remove disabling barriers’ (p. 15). They do not argue against the need for social change or the basic logic of the social model. They simply point out that by taking this logic to extremes, and underplaying the signifcance of impairments, there is a danger of undermining the whole argument. These views have been echoed by several other scholars within the feld of disability studies. Jenny Morris (1998), while acknowledging the value of

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the social model in terms of giving focus to the campaign against disabling barriers, points out that ‘we have tended to push to one side the experience of our bodies’ (p. 13). In a similar vein, Liz Crow (1996) argues that, by focusing so strongly on the impact of disabling barriers, We have tended to centre on disability as ‘all’. Sometimes it feels as if this focus is so absolute that we are in danger of assuming that impairment has no part at all in determining our experiences. (p. 2) Crow goes on to call for a ‘renewed social model’, highlighting the ways in which disability and impairment work together. She does acknowledge, however, that: [T]he social model has never suggested that disability represents the total explanation or that impairment doesn’t count – that has simply been the impression we have given by keeping our experiences of impairment private and failing to incorporate them into our public political analysis. (p. 9) These quotations highlight a general concern that the social model’s primary focus on the social causes of disability has led to a denial of the ‘disabling’ impact of impairment itself. Carol Thomas (2004) addresses this concern, to some extent, by referring back to the UPIAS (1976) statement on which the social model is based. While this statement associates disability with societal oppression, it does not deny that impairments can also cause sufering or restrict activities. It simply views disability in terms of the activity and participation restrictions that arise from society’s reaction to people with impairments. Thomas goes on to suggest that the success and widespread acceptance of the social model has led to conceptual confusion, because the model itself tends to oversimplify the social relational aspect of the UPIAS view through its focus on societal barriers: It is only a short distance, and one that has been commonly travelled, from these blunt social modellist assertions to the proposition that ‘all restrictions of activity are caused by social barriers’. (p. 579) Thomas (1999) attributes many of the apparent criticisms of the social model to a loss of the social relational understanding of disability. In calling for a revival of this understanding, she proposes the following defnition of disability:

Understanding, defning and measuring disability

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Social relational defnition of disability Disability is a form of social oppression involving the social imposition of restrictions of activity on people with impairments and the socially engendered undermining of their psycho-emotional wellbeing. (p. 60)

Disability, according to this defnition, relates only to those ‘restrictions of activity’ that arise from the social oppression of people with impairments. While impairments may well restrict activity as well, these impairmentrelated restrictions fall outside of the defnition. Thomas’s social relational defnition also recognises the psychological aspects of disabled people’s experiences. This is an important dimension of disability, which, as Reeve (2004) points out, can ‘leave some disabled people feeling worthless and ashamed’ (p. 83). The social model not only takes account of these psychological aspects but also has helped many disabled people to cope with them by promoting a sense of self-worth and positive identity. Crow (1996) recognises this, bearing testament to the value of the social model to her personally in coping with the psychological aspects of her own experiences.

Psychological value of the social model My life has two phases: before the social model of disability, and after it. Discovering this way of thinking about my experiences was the proverbial raft in stormy seas. It gave me an understanding of my life, shared with thousands, even millions, of other people around the world. I clung to it. (p. 1)

The social model and the Global South There is some debate within disability studies literature around the applicability of the social model to Global South contexts, where disabled people’s lives are often characterised by poverty and a daily struggle for survival. One concern sometimes raised is that the social model’s emphasis

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on social change may lead to a shift in priorities away from medical interventions that are often essential in helping to reduce impairment-related barriers to daily functioning (Shakespeare, 2013). Grech (2009) questions the wisdom of moving the focus away from impairment and functional limitations in countries where ‘poor livelihoods (and ultimately survival) are often dependent on hard physical labour (e.g. agriculture), making a healthy body an imperative’ (p. 776). He suggests that medical or rehabilitative solutions, aimed at enabling disabled people to cope better with their impairments, may refect the immediate priorities of disabled people more closely than strategies designed to bring about societal change in the longer term. Singal (2010) strikes a similar note of caution, arguing that while the social model is relevant to Southern countries, it should not be over-emphasised in contexts where disability is most likely the result of disease, malnutrition or other treatable and preventable factors. (p. 422) Yeo (2005) argues that promoting the social model agenda may sometimes put disability activists at odds with broader-based community movements that are fghting poverty. She gives an example of this from post-tsunami Sri Lanka, where disability organisations were lobbying for physical access to new hotels that were being built while at the same time whole fshing communities were campaigning against their displacement if the hotels were built at all. She argues that disabled people living in those communities would have been better served if the disability organisations had added their weight to that broader campaign, rather than pursuing the social model agenda of focusing on the accessibility of the proposed new hotels. This is not an argument against the logic of the social model or the need to make buildings accessible. Yeo’s point is that the social model’s strong focus on the role of society in creating disability, and implied ‘call to action’ on changing society, can sometimes lead to a diversion of resources which may be better employed in supporting poverty-focused community organisations that are trying to address the more immediate concerns of local disabled people.

Human rights model The human rights model is based on the principle that disability should be viewed as a natural part of human diversity, implying that disabled people are entitled to the same human rights as everyone else, including the right to full participation and citizenship. This approach, sometimes also referred to as the human rights framework, is explained as follows.

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The human rights model A human rights framework is empowering. Where a model of individual pathology marginalises people with disabilities and forces them to attempt to conform to social contexts that do not account for their needs, a human rights approach insists that governments take measures to foster inclusive societies that anticipate and respond to variations in human characteristics that are inherent to the human condition. (Rioux and Carbett, 2003)

This perspective, in which discrimination against disabled people is viewed as a denial of human rights, is increasingly refected in the language of international agreements and treaties.5 The CRPD, for example, calls for ‘the protection and promotion of the human rights of persons with disabilities in all policies and programmes’ (UN, 2006, Article 4, paragraph 1b) while frequently referring to the environmental barriers that prevent many disabled people from accessing these rights. While the human rights model is closely associated with the social model, it places a stronger emphasis on the universal value of human dignity. The CRPD lists ‘respect for inherent dignity’ as one of its eight general principles (Article Three), implying that human dignity is an inherent value which underpins the fundamental participation rights of all disabled persons. Degener (2016) argues that the human rights framework also goes beyond the social model in terms of recognising the need for social justice theories to take account of impairment and other life circumstances, thus acknowledging the diverse needs of disabled people. This aspect of the human rights model is also refected in the CRPD, which notes that those with higher support needs may require ‘more intensive support’ (Preamble, (j)) to access their rights. The core emphasis on human diversity within the human rights framework implies that impairment itself should be valued as a legitimate part of human diversity, which can have implications for some of the controversial debates around issues such as euthanasia and antenatal screening. Degener makes a similar argument in relation to other diversifying factors, such as age, gender, ethnicity and sexual orientation, in that the human rights model emphasises the need to address the intersectional discrimination that many disabled people experience.6 Lawson and Beckett (2021) ofer an alternative perspective, however, arguing that the human rights model complements the social model, rather than building on it, because both models have distinctive features. The social model focuses broadly

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Understanding, defning and measuring disability

on the societal causes of disability, radically challenging traditional understandings of the concept itself, whereas the human rights model is more prescriptive, providing an ideological basis for policies that are designed to protect and promote the inherent human rights of all disabled people. The two models are thus viewed as distinctive but complementary, with each continuing to play a crucial role in supporting the disability movement in its fght for social justice.

Bio-psycho-social model The bio-psycho-social model is best exemplifed by WHO’s International Classifcation of Functioning, Disability and Health (ICF), which was adopted by the World Health Assembly in 2001 as a framework for measuring health and disability at both the individual and national levels. This hybrid model,7 which incorporates environmental, biological and psychological factors, is illustrated by Figure 2.1. The ICF views disability in terms of functional limitations. As the diagram shows, there are three main aspects or components of functioning that are taken into consideration: body function and structure, activity limitations and participation restrictions. Body function and/or structure relates to functional limitations that arise from impairments, such as blindness or paralysis. Activity limitations are restrictions in carrying out everyday activities, such as eating, walking or getting dressed. Participation restrictions relate to aspects of community life, such as attending school, having a job or being involved in community organisations. The extent to which a disabled person experiences functional limitations in each of these three areas determines the extent of his or her disability. The model also incorporates various individual factors (such as a person’s age, gender, economic circumstances or education levels) and environmental factors (such as inaccessible

Health condion (Disorder/disease)

Body funcon and structure (Impairment)

Acvies (Limita˜on)

Environmental factors

Figure 2.1 The ICF Source: World Health Organization, 2002, p. 9.

Parcipaon (Restric˜on)

Personal factors

Understanding, defning and measuring disability

21

infrastructure or discriminatory attitudes) which may cause or reinforce functional limitations. Disability essentially arises from the interaction between these factors and a person with a health condition, as refected in the following defnition:

ICF defnition of disability The negative aspects of the interaction between an individual (with a health condition) and that individual’s contextual factors (environmental and personal factors). (WHO, 2001, p. 213)

This is a much broader defnition than the other defnitions highlighted in this chapter because it views disability as arising both from the environment and from bodily impairment. Interactional defnitions of disability, such as this, are increasingly refected in international discourse and legal frameworks relating to disability. The CRPD, for example, describes disability as resulting from ‘the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and efective participation in society on an equal basis with others’ (UN, 2006, Preamble, (e)). In some countries, national legislation is also following this trend. In Zambia, for example, the 2012 Persons with Disabilities Act replaces the medical defnition contained in the earlier 1996 Act with a new defnition of disability as ‘a permanent physical, mental, intellectual or sensory impairment that alone, or in a combination with social or environmental barriers, hinders the ability of a person to fully and efectively participate in society’ (Government of Zambia, 2012, Part 1(2)). The ICF is not without its critics. One of the most common criticisms is that the medical perspective is still dominant. For Trani and Bakhshi (2006), its main focus is still on the individual body and its limitations rather than on the interactions between individuals and society, thus diminishing the role of the cultural context in determining the extent to which a functional limitation becomes a disability. Oliver and Sapey (2006) criticise the methodological approach for assuming ‘that not only can the components of each level be reduced to numbers, so also can the complex relationships between them’ (p. 60). They conclude that the ICF will be difcult to operationalise and is unlikely to contribute to improving the lives of disabled people. Other authors have raised concerns around ambiguity within the framework. For example, Heerkens et al. (2018) note that the term ‘health condition’ is confusing as it could relate to health as a whole, while Bickenbach (2012) argues that the distinction between activity and participation is not clear enough.

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Understanding, defning and measuring disability

Recent critiques have focused on the need to revise the ICF in line with our developing understanding of disability. Heerkens et al. (2018) present three alternative diagrammatic representations of the ICF, each of which gives less prominence to ‘health conditions’ and places greater emphasis on the importance of environmental and personal factors (which may include health conditions). Mitra and Shakespeare (2019) argue that while the model attempts to capture the socio-economic determinants of disability, it should also take account of the social-economic determinants of health conditions. In other words, there is a direct link between health conditions, environmental and personal factors, which the ICF diagram fails to represent. This can be seen from the evidence that is emerging around the impact of COVID-19, which has led to the increased isolation of disabled people. This isolation has reduced levels of societal participation but has also had signifcant mental health consequences (Cobley, 2022). As Mitra and Shakespeare (2019) go on to explain, adjusting the ICF diagram to highlight the direct linkage between health conditions, environmental factors and personal factors would help to ‘bridge the gap between interventions aimed at preventing health conditions and those aimed at preventing their disabling consequences’ (p. 338). Notwithstanding these and other criticisms, the ICF is viewed by many as a solution to the ‘crude dualism’ (Shakespeare, 2008) between sociopolitical and body-related issues that is sometimes reinforced by advocates of the ‘strong’ version of the social model. The model is thus promoted in the World Report on Disability as representing a ‘workable compromise between the medical and social models’ (WHO and World Bank, 2011, p. 4). The report recommends adoption of the ICF as an international framework for measuring and assessing levels of disability to guide the allocation of resources, set objectives, measure outcomes and evaluate services.8 The application of the ICF as a basis for measuring disability is examined in the next section.

Refection exercise 2.1 Consider the following scenario: Pablo is a 62-year-old man who works as a delivery driver. He has recently been diagnosed with glaucoma, an eye condition which causes visual impairment, particularly if it is not treated at an early stage. Pablo is no longer able to see well enough to drive, so he asks his boss if he can be trained to do another job within the company. The boss does not feel that it is worth retraining him, as he is close to retirement anyway, so Pablo loses his job. As a result, he cannot aford the treatment for glaucoma and his sight further deteriorates. Pablo feels that he is no longer valued by society, so he now spends most of his time at home and rarely sees his old colleagues and friends.

Understanding, defning and measuring disability

23

Describe Pablo’s disability in terms of the three components of disability within the ICF: • • •

Body function and structure (impairment) Activities (limitations) Participation (restrictions)

Then use the ICF as a framework to analyse the various factors that create and reinforce disability in this case.

Measuring disability Understanding the nature and extent of disability is vitally important for enabling governments to make informed decisions about how best to design development policies and programmes that are disability-sensitive (UNESCO, 2012). The CRPD highlights the need for data collection to support the implementation of the Convention (Article 31). Similarly, the 2030 Agenda for Sustainable Development emphasises the need for the disaggregation of development outcomes by disability, with the accompanying indicator framework including several outcome indicators that relate specifcally to disability. In many countries, disability prevalence rates are estimated on the basis of national censuses and household surveys. The results of these, however, depend very much on the particular questions that are asked and the ways in which these questions are asked. Under-reporting may occur, for example, when enumerators are poorly trained, or when survey respondents are unsure about the uses to which the data will be put (Filmer, 2008). Conducting surveys may also run the risk of raising expectations among disabled people. When visited by data collectors, it is natural for disabled people and their families to assume that their participation in the survey may lead to some direct support or beneft in the near future. As Ingstad (2001) observes, however, even when programmes and policies are introduced as a result of surveys they rarely beneft all those participating in the initial survey directly. Another problem associated with disability measurement is the impact of negative attitudes and certain cultural beliefs around disability in many societies, which can make some families reluctant to speak openly about disability. Mont (2007) observes the frequent under-reporting of disability in countries of the Global South, where the shame and stigma attached to disability leads to some households denying the existence of disabled family members altogether. Making international comparisons on disability prevalence presents even greater challenges, given the variety of defnitions and understandings as to what actually constitutes disability. Methods of data collection have also

Understanding, defning and measuring disability

24

varied signifcantly from one country to another, leading to confusion and often undermining trust in disability statistics (Madans et al., 2017).9 Measuring disability using the ICF The World Report on Disability (WHO and World Bank, 2011) argues that measures of disability should extend beyond simply identifying those with particular impairment types. Environmental factors, such as the stigma attached to disability and the inclusivity of local community facilities, can have a huge impact on the lives of disabled people, and these factors often vary enormously between countries. Without taking these contextual factors into account, the true nature and extent of disability can never be understood. The report advocates the use of the ICF as a basis for measuring disability in a holistic way, taking into account activity and participation restrictions, as well as bodily limitations. In 2001, the Washington Group on Disability Statistics (WGDS) was set up by the United Nations with a mandate to develop a standard tool, based on the ICF, for measuring the prevalence and extent of disability across the globe in an internationally comparable way. The tool that emerged was the Washington Group Short Set of Questions (WG-SS), which was designed to identify the majority of people, within a given population, experiencing difculties in carrying out basic actions as a result of a health problem or condition (or impairment), thus restricting their ability to participate fully in society. The questions, shown in Box  2.1, cover six functional domains (or basic activities): seeing, hearing, walking, cognition, self-care and communication.

Box 2.1 Washington Group Short Set of Questions 1) 2) 3) 4) 5)

Do you have difculty seeing, even if wearing glasses? Do you have difculty hearing, even if using a hearing aid? Do you have difculty walking or climbing steps? Do you have difculty remembering or concentrating? Do you have difculty (with self-care such as) washing all over or dressing? 6) Using your usual (customary) language, do you have difculty communicating (for example, understanding or being understood by others)? Each of these questions has four response categories, indicating the severity of the activity limitation: • •

No difculty Yes, some difculty

Understanding, defning and measuring disability • •

25

Yes, a lot of difculty Cannot do at all

Several cut-of points can be used to measure the prevalence and extent of disability, based on responses to the questions. For example: • • • •

At least some difculty in at least one of the six domains At least a lot of difculty in at least one of the six domains Cannot do at all in at least one of the six domains At least a lot of difculty in at least one of the six domains or at least some difculty in two or more domains.

Part of the rationale for basing questions on activity limitations, rather than on the impairment itself, is to avoid the risk of under-reporting due to negative stigma and connotations around disability. People with intellectual or psychological impairments, in particular, may fail to identify themselves, or be identifed by others, as disabled or having a disability when asked the question directly. Focusing on activity limitations is thought to be more sensitive and socially acceptable, and thus likely to produce more accurate estimates of disability prevalence. There is also more fexibility in the WGDS approach, given the range of responses and cut-of options available. It is possible to focus on a particular domain of interest, for example, depending on the purposes of data collection. It is also possible to produce prevalence estimates that are disaggregated by domains, or by severity levels, thus providing a more nuanced picture of disability. Another advantage of the WGDS approach is the simplicity and non-ambiguity of the questions. Impairment-based survey approaches often require people to have some knowledge of their particular medical diagnosis or mental condition, or to make judgements as to whether their particular functional limitations qualify them as disabled, both of which could lead to under-reporting. Elderly people, for example, may interpret activity limitations as simply part of the ageing process rather than the onset of disability. In 2017, at the ffth meeting of the Inter-Agency and Expert Group on Sustainable Development Goal Indicators (IAEG-SDGs) in Ottawa,10 the WG-SS was endorsed in a statement from the disability sector as the most appropriate methodology for ensuring that disaggregated data on progress towards the achievement of the SDGs is both internationally comparable and comparable over time (IAEG-SDG, 2017). The growing recognition and acceptance of the WG-SS is also refected in its adoption by a wide range of international development agencies, such as the United Nations Statistical Division, and there is now a broad consensus that the tool ‘represents best international practice for disaggregating data by disability’ (WGDS, 2020, p. 7).

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Understanding, defning and measuring disability

The WG-SS has been used in more than 80 countries for various types of data collection, including household surveys and censuses (Development Initiatives, 2020). Where the approach has been adopted, much higher prevalence rates have tended to emerge than in surveys where more traditional methods have been employed. For example, the 2000 Census in Zambia, which included the question ‘Are you disabled in any way?’, revealed a prevalence rate of 2.7 per cent, while much higher prevalence rates emerged from the 2006 Living Conditions Survey, which made use of the WG-SS (Eide and Loeb, 2006). Where the cut-of point ‘at least some difculty in at least one of the six domains’ was used, the resulting prevalence rate was 14.5 per cent. Choosing a more conservative cut-of point, ‘at least a lot of difculty in at least one of the six domains’, still led to a prevalence rate of 8.5 per cent, more than three times the previous censusbased estimate. An international disability data review, conducted across 40 countries by Leonard Cheshire (2018) in preparation for the frst Global Disability Summit in London, found that in countries where the WGDS approach was adopted, prevalence rates tended to fall between 6 per cent and 12 per cent. The World Health Survey (WHO, 2002–2004), which covered 70 countries, was an ambitious attempt to measure disability across countries. Disability data was gathered from a weighted sample of respondents within each country, using a single questionnaire based on the ICF approach. The survey revealed an average prevalence rate of 15.6 per cent, across the 70 countries, ranging from 11.8 per cent in high-income countries to 18 per cent in low-income countries. The World Report on Disability (WHO and World Bank, 2011) uses data from this survey, together with the Global Burden of Disease survey conducted between 2000 and 2004, to estimate the current worldwide disability prevalence rate at 15 per cent. This equates to over one billion people or nearly one-sixth of the world’s population. The report acknowledges, however, that both of the surveys on which these estimates are based had signifcant limitations, including the arbitrariness of where to set the threshold for disability and diferences between countries in terms of the extent to which respondents were willing to report difculties in functioning.

Summary of key points • •

•

Models of disability play an important role in shaping perceptions of disability and thus infuencing both policy and practice in the feld of disability and international development. Individual models locate disability within the impaired body and are underpinned by notions of disability as a personal tragedy. The religious model, the welfare model and the medical model are examples of individual models. The social model locates disability frmly within society. Within this model, disability arises from the failure of society to adapt to the diverse

Understanding, defning and measuring disability

•

•

•

27

needs of disabled people. The growing infuence of social model has encouraged disabled people to value themselves and to seek justice as citizens within an unfair society. There are debates, however, around the extent to which this model adequately takes account of the disabling impact of impairment, particularly in the Global South context. The human rights model difers from the social model in that it places a greater emphasis on human dignity. This model provides a road map for disability policies that have been adopted by governments, development agencies and disability organisations on the international stage as a basis for promoting the full participation of disabled people within mainstream society. The bio-psycho-social model incorporates elements of the medical model and the social model. The ICF, which is the best example of this model, views disability in terms of functional limitations in three core areas: body function and structure, activities and participation. The ICF has provided a basis for the development of the WG-SS, a fexible tool for measuring disability in a way that facilitates international comparisons and reduces the impact of stigma on the data collection process.

Discussion questions 1) How is disability understood in the country where you live or work, and which models of disability are refected in these perceptions? How have perceptions changed over time? 2) How are models of disability refected in the various linguistic terms that are used in relation to disability and disabled people? 3) What are the advantages and disadvantages of using the WG-SS as a tool for measuring disability?

Suggested further reading Iriarte, E. (2016) ‘Models of Disability’. In Iriarte, E., McConkey, R. and Gilligan, R. (Eds.) Disability and Human Rights: Global Perspectives. London: Palgrave, 10–32. Madans, J., Loeb, M. and Eide, A. (2017) ‘Measuring disability and inclusion in relation to the 2030 Agenda on Sustainable Development’. In Disability and the Global South 4(1): 1164–1179.

Notes 1 See Chapter 12 for further discussion on this case. 2 Organisations of disabled people, as opposed to organisations for disabled people, are usually referred to as disabled people’s organisations (DPOs). Chapter 5 focuses on some of the issues and challenges facing DPOs today. 3 This is consistent with the ‘human variation model’, which defnes disability as the ‘systematic mismatch between physical and mental attributes of individuals

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4 5 6 7 8 9 10

Understanding, defning and measuring disability and the present (but not potential) ability of social institutions to accommodate those attributes’ (Schriner and Scotch, 2001, p. 100). This is consistent with the ‘minority group model’, which identifes disabled people as members of a minority group subject to stigmatisation, discrimination and exclusion, in much the same way as certain ethnic minority groups. See Chapter 4 for a review of major international agreements on disability. See Chapter 3 for further discussion around disability and intersectionality. There are a number of other hybrid models, such as the cultural model, the defectology model and the Columbian model. Iriarte (2016) provides a useful explanation of these three models (see Suggested further reading). Chapter 7 examines the use of the ICF as a framework to guide rehabilitation processes. See Suggested further reading. The IAEG-SDGs comprise representatives of UN agencies, civil society organisations (including DPOs) and independent experts from 27 UN Member States.

References Barnes, C. (1998) ‘The Social Model of Disability: A  Sociological Phenomenon Ignored by Sociologists’. In Shakespeare, T. (Ed.) The Disability Reader. London: Continuum, 65–78. Barnes, C. and Mercer, G. (2003) Disability. Cambridge: Polity Press. Berghs, M. (2014) ‘The New Humanitarianism: Neoliberalism, Poverty and the Creation of Disability’. In Gill, M. and Schuland-Vials, C. (Eds.) Disability, Human Rights and the Limits of Humanitarianism. Burlington: Ashgate Publishing Company. Bickenbach, J. (2012) ‘The International Classifcation of Functioning, Disability and Health and Its Relationship to Disability Studies’. In Watson, N., Roulstone, A. and Thomas, C. (Eds.) Routledge Handbook of Disability Studies. London: Routledge, 51–66. Brisenden, S. (1986/1998) ‘Independent Living and the Medical Model of Disability’. In Shakespeare, T. (Ed.) The Disability Reader. London: Continuum, 20–27. Cobley, D.S. (2012) ‘Towards economic empowerment: Segregation versus inclusion in the Kenyan context’. In Disability and Society 27(3): 371–384. Cobley, D.S. (2022) ‘Rising to the challenge: Disability organisations in the COVID19 pandemic’. In Disability and Society. DOI:10.1080/09687599.2022.2114884. Connell, R. (2011) ‘Southern bodies and disability: Rethinking concepts’. In Third World Quarterly 32(8): 1369–1381. Crow, L. (1996) ‘Including All of Our Lives: Renewing the Social Model of Disability’. In Morris, J. (Ed.) Encounters with Strangers. London: The Women’s Press. Degener, T. (2016) ‘A Human Rights Model of Disability’. In Blanck, P. and Flynn, E. (Eds.) Routledge Handbook of Disability Law and Human Rights. London: Routledge, 31–50. Development Initiatives (2020) Generating Disability Statistics: Models of Disability Measurement, History of Disability Statistics and the Washington Group Questions. Retrieved on 18 August 2021 from fle:///C:/Users/David%20Cobley/Downloads/Generating-disability-statistics_IF%20(2).pdf Dos Santos-Zingale, M. and McColl, M.A. (2006) ‘Disability and participation in post-confict situations: The case of Sierra Leone’. In Disability and Society 21(3): 243–257.

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Eide, A. and Loeb, M. (2006) Living Conditions among People with Activity Limitations in Zambia: A National Representative Study. Oslo: SINTEF. Retrieved on 27 July 2021 from www.sintef.no/en/publications/publication/1268894/ Filmer, D. (2008) ‘Disability, poverty and schooling in developing countries: Results from 14 household surveys’. In The World Bank Economic Review 22(1): 141–163. Gartrell, A. and Hoban, E. (2013) ‘Structural vulnerability, disability and access to non-governmental organisation services in rural Cambodia’. In Journal of Social Work in Disability & Rehabilitation 12(3): 194–212. Government of United Kingdom (UK) (2012) Equality Act 2012. Retrieved on 20 August 2021 from www.legislation.gov.uk/ukpga/2010/15/section/6 Government of Zambia (2012) Persons with Disabilities Act 2012. Retrieved on 20 August 2021 from www.ilo.org/dyn/natlex/docs/ELECTRONIC/94955/111598/ F-353321041/ZMB94955.pdf Grech, S. (2009) ‘Disability, poverty and development: Critical refections on the majority world debate’. In Disability and Society 9(2): 343–358. Heerkens, Y.F., de Weerd, M., Huber, M., de Brouwer, M., van den Veen, S., Perenboom, R., van Gool, C., ten Napel, H., van Bon-Martens, M., Stallinga, H. and van Meeteren, N. (2018) ‘Reconsideration of the scheme of the international classifcation of functioning, disability and health: Incentives from the Netherlands for a global debate’. In Disability and Rehabilitation 40(5): 603–611. Hunt, P. (1966) ‘A Critical Condition’. In Shakespeare, T. (Ed.) The Disability Reader. London: Continuum, 7–19. IAEG-SDG (Inter-Agency and Expert Group on Sustainable Development Goal Indicators) (2017) Disability Data Disaggregation: Joint Statement by the Disability Sector. Fifth Meeting of the IAEG-SDGs, Ottawa, March. Retrieved on 11 August 2021 from www.internationaldisabilityalliance.org/data-joint-statement-march2017 Ingstad, B. (2001) ‘Disability in the Developing World’. In Albrect, G.L., Seelman, K. and Bury, M. (Eds.) Handbook of Disability Studies. London: SAGE. Iriarte, E. (2016) ‘Models of Disability’. In Iriarte, E., McConkey, R. and Gilligan, R. (Eds.) Disability and Human Rights: Global Perspectives. London: Palgrave, 10–32. Lang, R. (2001) Understanding Disability from a South Indian Perspective. Paper presented at the 14th Annual Meeting of the Disability Studies Association, Winnipeg. Retrieved on 1 April 2021 from www.gov.uk/research-for-development-outputs/ understanding-disability-from-a-south-indian-perspective Lawson, A. and Beckett, A.E. (2021) ‘The Social and Human Rights models of disability: Towards a complementary thesis’. In The International Journal of Human Rights 25(2): 348–379. Leonard Cheshire (2018) Disability Data Review: A  Collation and Analysis of Disability Data from 40 Countries. Retrieved on 11 August  2021 from www. disabilitydataportal.com/resources/ Madans, J., Loeb, M. and Eide, A. (2017) ‘Measuring disability and inclusion in relation to the 2030 Agenda on Sustainable Development’. In Disability and the Global South 4(1): 1164–1179. Mitra, S. and Shakespeare, T. (2019) ‘Remodelling the ICF’. In Disability and Health Journal 12: 337–339. Mont, D. (2007) Measuring Disability Prevalence. Washington, DC: World Bank. Retrieved on 11 April 2021 from www.researchgate.net/publication/257262995_ Measuring_Disability_Prevalence_Social_Protection_Discussion_Paper_No_0706_ World_Bank_2007

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Morris, J. (1998) Feminism, Gender and Disability. Paper presented at seminar in Sydney, Australia, February. Retrieved on 6 May  2021 from https://disabilitystudies.leeds.ac.uk/wp-content/uploads/sites/40/library/morris-gender-anddisability.pdf National Council for Disability Afairs (NCDA) (2009) Republic Act 7277. Manila: NCDA. Oliver, M. (1983) Social Work with Disabled People. Basingstoke: Macmillan. Oliver, M. (1990) The Politics of Disablement. Basingstoke: Macmillan. Oliver, M. (1996) Understanding Disability: From Theory to Practice. Basingstoke: Macmillan. Oliver, M. and Sapey, R. (2006) Social Work with Disabled People (3rd Edition). Basingstoke: Macmillan. Reeve, D. (2004) ‘Psycho-emotional Dimensions of Disability and the Social Model’. In Barnes, C. and Mercer, G. (Eds.) Implementing the Social Model of Disability: Theory and Research. Leeds: The Disability Press, 83–100. Rioux, M. and Carbett, A. (2003) ‘Human rights and disability: The international context’. In Journal of Development Disabilities 10(2). Schriner, K. and Scotch, R. (2001) ‘Disability and institutional change: A  human variation perspective on overcoming oppressions’. In Journal of Disability Policy Studies 12(2). Shakespeare, T. (1996) ‘Disability, Identity and Diference’. In Barnes, C. and Mercer, G. (Eds.) Exploring the Divide. Leeds: The Disability Press, 3–15. Shakespeare, T. (2008) ‘Debating disability’. In Journal of Medical Ethics 34: 11–14. Shakespeare, T. (2013) Disability Rights and Wrongs Revisited (2nd Edition). London: Routledge. Shakespeare, T. and Watson, N. (2002) ‘The social model of disability: An outdated ideology?’ In Research in Social Science and Disability 2: 9–28. Singal, N. (2010) ‘Doing disability research in a Southern context: Challenges and possibilities’. In Disability and Society 25(4): 415–426. Soldatic, K. (2013) The transnational sphere of justice: Disability praxis and the politics of impairment. In Disability and Society 28(6): 744–755. Sutherland, A. (1981) Disabled We Stand. London: Souvenir Press. Thomas, C. (1999) Female Forms: Experiencing and Understanding Disability. Buckingham: Open University Press. Thomas, C. (2004) ‘How is disability understood? An examination of sociological approaches’. In Disability and Society 19(6): 569–583. Trani, J. and Bakhshi, P. (2006) ‘The Capability Approach to Understanding Disability: Increasing Comparability, Defning Efcient Programs’. In Reboud, V. (Ed.) Capabilities and Public Policies. Paris: French Agency for Development. UN (United Nations) (2006) Convention on the Rights of Persons with Disabilities and Optional Protocol. Washington, DC: United Nations. UNESCO (United Nations Economic and Social Council) (2012) Mainstreaming Disability in the Development Agenda. Draft Resolution by the Commission for Social Development. Washington, DC: UN. Retrieved on 14 July 2021 from www. un.org/disabilities/documents/csocd/draft_res_e_cn_5_2012_l6.pdf UPIAS (Union of the Physically Impaired Against Segregation) (1976) Fundamental Principles of Disability. London: UPIAS. Retrieved on 24 June  2021 from https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/UPIASfundamental-principles.pdf

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WGDS (Washington Group on Disability Statistics) (2020) The Data Collections Tools Developed by the WGDS and their Recommended Use. Retrieved on 24 August  2021 from www.washingtongroup-disability.com/fleadmin/uploads/wg/ Documents/WG_Implementation_Document__1_-_Data_Collection_Tools_ Developed_by_the_Washington_Group.pdf WHO (World Health Organization) (2001) International Classifcation of Functioning, Disability and Health. Geneva: World Health Organization. WHO (World Health Organization) (2002) Towards a Common Language for Functioning, Disability and Health: ICF. Geneva: World Health Organization. WHO (World Health Organization) (2002–04) World Health Survey. Geneva: WHO. WHO (World Health Organization) and World Bank (2011) World Report on Disability. Geneva: WHO. Retrieved on 22 October  2021 from http://whqlibdoc. who.int/publications/2011/9789240685215_eng.pdf Wood, P. (1980) International Classifcation of Impairments, Disabilities and Handicaps. Geneva: WHO. World Bank (2009) People with Disabilities in India: From Commitments to Outcomes. Human Development Unit, South Asia Region. Washington, DC: World Bank. Yeo, R. (2005) Disability, Poverty and the New Development Agenda. London: DFID. Retrieved on 4 May 2021 from www.dfd.gov.uk/r4d/PDF/Outputs/Disability/ RedPov_agenda.pdf

3

Disability, identity and shared experiences of poverty

The term ‘identity’, in the social context, relates to the various ways in which individuals or groups view and understand themselves. In simple terms, having a sense of identity means ‘knowing who you are’ (Kidd and Teagle, 2012, p. 25). Social identity is determined, to some extent, by the social roles that people perform, such as being a parent or having a particular job, and the social groups or categories to which they belong. Disability itself is the basis of one such social group, but disabled people may also identify with a number of other social groups, defned on the basis of shared characteristics such as gender, ethnicity, class, religion, sexual orientation, socio-economic status, occupation, location or a common interest. It is clear, therefore, that disabled people do not constitute a homogenous group and that the process of identity forming is likely to vary greatly from one individual to another. It is thus important to avoid making generalised assumptions in relation to disabled people, as emphasised in the following quotation from Simon Brisenden (1986/1998), a pioneer of the UK disability movement:

Disability and diversity It is important that we do not allow ourselves to be dismissed as if we all come under this one great metaphysical category ‘the disabled’. The efect of this is a depersonalization, a sweeping dismissal of our individuality, and a denial of our right to be seen as people with our own uniqueness, rather than as the anonymous constituents of a category or group. (p. 21)

In the global context, the diferences are magnifed. Perceptions of disability difer greatly due to the various ways in which the concept of disability has been socially and historically constructed, as do the various social, political, economic and cultural contexts within which disabled people live. Despite DOI: 10.4324/9781003256038-3

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these diferences, however, some commentators have referred to a ‘commonality of experience’ among disabled people, particularly those living in countries of the Global South, predominantly brought about through exposure to multidimensional poverty, discrimination and injustice. Barnes (2001), for example, points to testimonials drawn from over 3,500 responses to a global survey conducted for the WHO Disability and Rehabilitation team in 2000, the vast majority of which came directly from disabled people themselves, revealing shared experiences of economic, political and social deprivation. The rapid growth of the international disability movement is partly founded on recognition of this commonality of experience.1 This chapter discusses a range of factors that can shape the identities of disabled people, both collectively and individually, infuencing their experiences, aspirations and sense of self-worth, as well as how others view them and interact with them. An intersectionality lens is adopted to explore how individual experiences are infuenced by the interaction of disability with various other social identities, within difering social, economic and political contexts. The chapter then focuses on the close and complex relationship between disability and poverty, reviewing some of the main conceptualisations of this relationship and drawing on a growing body of evidence capturing the real-life experiences of disabled people. Finally, the role of social protection as a strategy for alleviating poverty among disabled people is examined.

Disability models and social identity Historically, the collective identity of disabled people as a social group has been strongly infuenced by non-disabled people, based on individual model perspectives of disability. Medical and rehabilitation professionals, for example, have tended to identify disabled people as defcient in terms of functioning and hence incapable of conforming fully to the norms of society, while others have projected disabled people as victims of tragic circumstances or as needy recipients of charity (Oliver, 1983). Negative stereotypes have arisen from ill-informed assumptions about the capabilities of disabled people, thus reinforcing perceptions of disability based on sweeping generalisations rather than recognition of uniqueness and individuality (Murugami, 2009). These negative identities are often internalised by disabled people themselves, as Morris (1998) explains:

Negative messages internalised The messages we receive are very strong and clear and we have little access to diferent values which may place a more positive value on our bodies, ourselves and our lives. Our self-image is thus dominated by the non-disabled world’s reaction to us. (p. 28)

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The rise of the social model of disability has played an important role in empowering disabled people to reshape their identities. The social model emphasises the disabling impact of society, thus shifting attention from individual defcits to the inadequacies of society. This re-conceptualisation of disability has encouraged disabled people to value themselves more and to reject the negative identities that are sometimes imposed on them by society. This is sometimes easier within a collective environment, and the growth of the disability movement has helped to make this increasingly possible. The movement has challenged perceptions of disabled people as incapable and passive, instead highlighting their potential to fulfl more valued social roles as rights holders, experts on disability and agents of change. In projecting a collective identity, however, there is a danger that diferences among disabled people may be downplayed or even ignored altogether. For example, Shakespeare (1996) points out that disabled people within Asian or Islamic societies may tend to prioritise the importance of family ties and mutual solidarity rather than the ‘very individualistic model of liberation’ (p. 108) that is often embraced by disability rights campaigners in Western societies.

Impairment and identity Disability is often categorised according to diferent types of impairment, such as physical, intellectual, hearing or visual. A  person with a hearing impairment, for example, is thought to have a diferent type of disability to someone with an intellectual impairment. When disability is viewed in social model terms, however, the categorisation of disability according to impairment types makes less sense. As Oliver (1990) points out, all disabled people experience disability as a social restriction, in one form or another, regardless of the type (or types) of impairment that they have. Nonetheless, the impact of impairment on the experiences of disabled people cannot be denied, and each type of impairment, or combination of impairment types, is associated with a diferent set of needs and experiences. Powers (2008), for example, outlines the difering needs that disabled people may have, depending on their impairment type, to participate fully in the workplace: people with hearing impairments may need sign language interpreters; those with mobility impairments may have physical accessibility needs; those with intellectual impairments may need job tasks to be broken down into a series of steps that are easier to follow. The type and severity of impairment that a disabled person has can also have a signifcant impact on the levels of discrimination that he or she faces. Those with intellectual impairments or mental health conditions, for example, are particularly vulnerable to discrimination in many settings (WHO and World Bank, 2011), while Grech’s (2008) study on disability and poverty in rural Guatemala found that those with more severe impairments were ‘disadvantaged in terms of employment, social relationships and the costs incurred’ (p. 5).

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The visibility of impairment can have a signifcant impact on the extent to which a person develops a strong sense of identity as a disabled person. A person with a clearly visible impairment is likely to be labelled by others as ‘disabled’ and hence may fnd it easier to access support services that enable him or her to participate more fully in society, thus boosting self-esteem and the forming of a positive identity. On the other hand, this labelling process may cause the impairment to become central to the person’s identity, overshadowing other elements of self and leading others to see only the impairment rather than the person (Dunn and Burcaw, 2013). Those with less visible impairments face a diferent set of challenges. They are less likely to be labelled as ‘disabled’ by others, at least initially, and may also be less willing to identify as disabled people themselves, thus denying themselves the opportunity to develop a positive sense of disability identity and possibly exposing themselves to the stress that arises from the threat of potential discovery (Pachankis, 2007).

Disability and intersectionality Intersectionality theory, which emerged from the black feminist movement of the 1980s, rejects the notion of social groups as separate, essentialist categories, recognising instead that people belong to multiple groups (Shaw et al., 2012) and that social identities coexist and interact to produce one’s subjective social experience (de la Rey, 1997). Intersectionality thus provides a useful tool for analysing the multidimensionality of human experiences and the interlocking systems of oppression shaping them (Crenshaw, 1989; Collins, 1990). This approach highlights the complexity of interactions between various social identities rather than assuming that they are independent of one another. While early scholarship in this feld (see also Crenshaw, 1991) focused primarily on the experiences of black women and the racial barriers that they faced, intersectionality has now become a foundational concept that can be (and has been) applied to a wide range of social identities, including disability. The importance of recognising intersectional discrimination is reinforced by the CRPD, which notes that disabled people may be ‘subject to multiple or aggravated forms of discrimination on the basis of race, colour, sex, language, religion, political or other opinion, national, ethnic, indigenous or social origin, property, birth, age or other status’ (UN, 2006, Preamble, (p)). Intersectional studies on disability A growing number of studies have adopted an intersectional lens to explore how multiple identities combine to shape the experiences of disabled people, often reinforcing marginalisation in diferent ways. Many of these have focused on the binary intersection between disability and gender, showing that disabled women and girls frequently face a double burden of inequality

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and discrimination in both their public and private lives while others have examined a broader range of identities including race, caste and sexual orientation. A study on the experiences of disabled women in Ethiopia (Katsui and Mojtahedi, 2015)2 showed that the intersection between disability and gender tends to lead to a denial of opportunities and choices, especially in the areas of education and employment. This was found to be largely due to the internalisation of disability-related stigma combined with societal expectations that disabled women would fulfl traditional gender roles within their households. However, the participants in this study had been empowered through membership of a self-help group, enabling them to build a more positive sense of disability identity and challenge the stigma that they faced within their local communities. Similar fndings emerged from a study by Kandasamy et al. (2017), which adopted an intersectional-peace lens to explore the impact of an advocacy group network on the lives of disabled women in Sri Lanka who experience social exclusion and discrimination on the basis of disability, gender, rurality and poverty. The women had been able to form new positive identities through greater awareness of disability rights and entitlements, and increased opportunities for economic participation. Some had also undergone leadership training, enabling them to take up leadership roles within their local communities. In Malawi, evidence of intersectional discrimination on the basis of disability and gender emerged from a set of interviews conducted with 23 disabled women (Braathen and Kvam, 2008). This study highlighted a range of obstacles to marriage, including the perception among some men that marriage to a disabled woman would bring bad luck to their families. Only fve of the participants were married at the time of the study, with nine divorced (left alone, in most cases, to look after the children), one widowed and eight never having been married. Some of those who were married reported discrimination and ill-treatment within their marriages on account of being both disabled and female, as illustrated by the testimony of one participant: A woman with a disability is never taken out by her [able-bodied] husband, but often a disabled man is seen out with his able-bodied woman . . . The woman is always controlled by the man. If she borrows money to make some business the man will take the money and use it for other things. If the woman is disabled, maybe he will use the money to go out with able-bodied women. (p. 467) Dean et al. (2017) apply an intersectional approach to their study on the experiences of disabled women in Gujarat, India. Based on unstructured interviews, this study found that participants had encountered negative and often false assumptions, from both family members and professionals, in

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relation to their sexual and reproductive health needs. They were often unable to contest these perspectives due to intersecting power dynamics arising from diferences relating to gender, impairment type and severity, marital status and socio-economic status. Moodley and Graham (2015) explore how disability and gender combine with race to reduce educational opportunities and economic participation for both men and women in South Africa. The destabilising impact of race on the relationship between disability and gender is refected in the surprising fnding that non-disabled black men actually fare worse than disabled white women in terms of both education and employment. Another study focusing on the intersection between disability, gender and race, this time in the United States, analyses data from the 2015 American Community Survey to show how this three-way intersection is a source of educational inequality and economic insecurity (Maroto et al., 2019). The intersection between disability and caste is explored in a study based on National Sample Survey data in India (Pal, 2011), examining the living conditions of disabled people who also identify as Dalits, thus occupying the lowest category within the Indian caste system. Despite a range of special interventions designed to support their integration, disabled Dalits were found to experience lower levels of participation in education and employment, reduced access to support services, increased levels of social stigma and deeper vulnerability to household poverty. Finally, the intersection between disability and sexual orientation is examined in a study carried out in Australia (Leonard and Mann, 2018). This study found that disabled people who identify as lesbian, gay, bisexual, transgender and intersex (LGBTI) experience greater levels of discrimination, reduced access to services and higher level of violence and abuse, in comparison with non-LGBTI disabled people and non-disabled LGBTI people. Moreover, the study report revealed that many disabled LGBTI people feel alienated from both the disability community and the LGBTI community, increasing their sense of social isolation. This study highlighted the need for an intersectional understanding of identity and discrimination to ensure that policies and services recognise the diversity of lived experiences and address the specifc concerns of disabled LGBTI people.

Cultural context Culture can be defned as ‘the set of attitudes, values, beliefs and behaviours shared by a group of people, but diferent for each individual, communicated from one generation to the next’ (Matsumoto, 1996, p.  16). Given that disability itself is a socially constructed concept (Bickenbach, 2009), it follows that experiences of disability are greatly dependent on the nature of the cultural context in which disabled people live. This section considers how various cultural factors infuence the lives and identities of disabled people.

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Local beliefs systems and disability-related stigma can have a profound infuence on perceptions of disabled people. Disabled people are often viewed as less than human or a source of shame, which can have serious consequences in terms of how they are treated (Rohwerder, 2018). Stigmatising beliefs and perceptions around disability and its causes are present in many societies around the world and are often among the root causes of discrimination and social isolation (BDDG, 2017). In Cote d’Ivoire, for example, disabled children are widely considered to be cursed and sometimes even referred to as ‘serpent children . . . believed to turn into a snake at night and kill people’ (Bayat, 2014, p. 38). Participants in this study explained that natural disasters or other tragedies occurring within local communities were often attributed to curses inficted due to evil spirits within disabled children. Such beliefs reinforce marginalisation and can easily be internalised by disabled people themselves. This process of internalisation was illustrated by a qualitative study involving 20 disabled participants living in a rural district of north-west Zimbabwe, over half of whom ‘understood that the cause of their impairments was linked to witchcraft or the power of ancestral spirits’ (Munsaka and Charnley, 2013, p. 760).3 The common association between disability and witchcraft also emerges from the testimony of one of the participants in Braathen and Kvam’s (2008) study in Malawi.

Disability and witchcraft I became physically disabled when I was about . . . years old. I was feeling pain on my waist, especially the left leg, and then I could not walk. I stayed in hospital for three months, and later I was told that my left leg has been afected by polio. My parents could not believe it, so they took me to a witchdoctor, who said that I had stepped on something which was put by a certain woman who was not happy with me. He said I had been bewitched. . .. Other people regard my disability as witchcraft. They say that I fell from a witchcraft airplane at night while going to bewitch other people. (p. 465)

Cultural understandings and attitudes are often refected in language, while language itself plays a role in shaping culture (Underhill, 2012). The use of negative or demeaning linguistic terms in relation to disability is likely to reinforce cultural attitudes that justify the social exclusion of disabled people (Gargett et al., 2016). Charlton (1998) provides a powerful example of this in his iconic book Nothing About Us Without Us, in which he includes the following quotation from a representative of the National Council of Disabled Persons of Zimbabwe.

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Disability and language In Africa, in our culture, we do not even use the awful term ‘cripple’. It’s even worse. In Shona, the word is ‘chirema’, which means totally useless, a failure. So a person with disability begins life as a chirema. (p. 66)

Cultural influences are not always negative. The Chagga people in East Africa view people with physical impairments as pacifiers of evil spirits while the Turkana in Kenya view disabled children as a gift from God (Mostert, 2016). Some beliefs originate from legends, folklore and religious texts, which often send out mixed messages. Miles (1999) describes how some snippets of classical Hindu and Buddhist literature ridicule disabled people while others elevate them to a higher status. For example, the Jataka stories in Buddhism include disabled characters such as the blind sea pilot, who sees more with his hands than others see with their two eyes. It is important, therefore, to avoid making sweeping generalisations when discussing attitudes towards disability around the world. Ingstad (2001) takes up this point, challenging ‘the myth that people in non-Western societies hide, abuse and even kill their disabled family members’ (p. 774). While not denying that these abhorrent practices may occur from time to time, she argues that most families are very motivated to provide the best care that they can for their disabled family members and that premature deaths of disabled people are more often associated with general poverty and poor healthcare than wilful neglect. A collection of articles edited by Ingstad and Whyte (1995) highlights the concept of personhood, which relates to the extent to which one is valued by others as a human being, as crucial to understanding how disabled people are viewed (and view themselves) within particular societies. These articles draw on empirical evidence, from a wide range of settings, to show how the acceptance of disabled people is often dependent on the extent to which they conform to the defning characteristics of personhood within the particular society in which they live. In countries of the Global South, this notion of personhood is often linked to community identity, reinforced by the strength of kinship ties and the ability to play an important role within one’s family and community, rather than depending greatly on individual abilities and attributes. Economic and political factors can also play an important role in shaping the cultural context. For example, the nature of local economies can have an impact on the extent to which disabled people are viewed as capable

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of making a productive contribution to society. People with intellectual impairments, for example, may face greater barriers to economic participation in societies where jobs require high levels of literacy and information technology skills, and consequently may be viewed by many as ‘less competent’ than those with similar impairments living in societies where manual skills are more in demand (World Bank, 2007). Political institutions infuence the cultural context through legislation and policies. In Myanmar, for example, political and institutional frameworks have promoted the view of disabled employees as ‘special cases’, requiring extra leeway in terms of meeting productivity and performance standards, thus promoting a view of disabled people as less productive and even unemployable (Gargett et al., 2016).4 In many countries, national laws continue to defne disability in medical terms, thus reinforcing the prominence of impairment as the cause of disability and therefore medical solutions as the appropriate societal response. Culture is a dynamic concept, and the cultural context in which disabled people live is constantly evolving. With increasing international recognition of disability rights and understanding of the social factors that create and reinforce disability, it is to be hoped that the evolving cultural context in many countries will increasingly shape the identities of disabled people in a positive way. There is some evidence to suggest that this process has already begun. For example, the following observation was made during a focus group discussion conducted with representatives of a disability-focused organisation in the Indian city of Chennai.

Cultural change in South India There has been a sea-change in attitudes over the last ffteen years. Parents now believe that if their children are educated then there will be job opportunities for them . . . disabled people are starting to have aspirations. They are aiming higher. (Cobley, 2013, p. 273)

This focus group participant also identifed a greater awareness of disability rights, which was gradually challenging a deep-rooted culture of charityoriented attitudes to disability in India. She attributed this partly to an increase in media coverage, with disability now being treated as a hard issue rather than a human-interest story and more respectful language being used. Another participant agreed, pointing out that the Indian flm industry was now portraying disability in a much more positive way rather than presenting characters as comic or tragic diversions.

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Refection exercise 3.1 List some of the cultural factors that infuence the identities of disabled people within a country or region that you are familiar with. How has the cultural context changed over the past ten years or so and to what efect?

Shared experiences of poverty It is widely recognised that disability is closely associated with poverty. The CRPD acknowledges this connection, stating that ‘the majority of persons with disabilities live in conditions of poverty’ (UN, 2006, Preamble (t)). Moreover, Article 28 of the Convention calls for greater recognition of the rights of disabled people to ‘an adequate standard of living for themselves and their families’ (Paragraph 1) and access ‘to social protection programmes and poverty reduction programmes’ (Paragraph 2(b)). The close association between disability and poverty is also a strong theme emerging from the World Report on Disability (WHO and World Bank, 2011), which presents evidence from numerous studies to suggest that disabled people are more likely to experience multiple deprivations than the general population. While the report acknowledges that much of this evidence had emanated from the Global North, this picture is now changing with the publication of a growing number of studies around the relationship between disability and poverty in Southern contexts. Furthermore, evidence that has emerged since the start of the COVID-19 pandemic suggests that many disabled people have experienced even greater levels of isolation and poverty, often due to a lack of disability-inclusive state responses to the pandemic, thus deepening the relationship (Mehrotra and Soldatic, 2021; COVID-19 DRM, 2020).5 Until now, much of the empirical research on disability and poverty appears to have been conducted by those who specialise in disability research and advocacy. Groce (2010) calls for more attention to be paid to this issue within the wider international development community, so that disability research can be included within wider theoretical debates and studies around poverty reduction. Broadening and deepening the body of empirical evidence on the relationship between disability and poverty to increase our understanding of the complex mechanisms that create and reinforce this relationship is a vital step towards the realisation of international poverty reduction targets, such as those set out in the 2030 Agenda for Sustainable Development. This framework, together with the CRPD, provides clear guidance to governments and development agencies on the need to ensure that development processes recognise the diverse needs and aspirations of disabled people while also acknowledging and addressing their shared experiences of poverty.

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Disability and poverty in the Global South A systematic review of 150 studies, all conducted within low- and middleincome countries (LMICs), found that 122 of the studies reported a statistically signifcant positive relationship between disability and economic poverty (Banks et al., 2017). Other studies have explored the wider dimensions of poverty. For example, a World Bank (2009) study in India found that illiteracy rates among disabled people were 52 per cent, as compared to 35 per cent within the general population and that households with disabled family members were less likely than those without to have three meals a day. Grech’s (2008) study on disability and poverty in rural Guatemala found that disability had a negative impact on all livelihood assets, reducing the choice of livelihood strategies open to disabled people and leading to multidimensional impoverishment, with a knock-on efect for their whole families. This is also illustrated by Case Study 3.1, which shows how a range of disabling factors, from unafordable medical treatment to discriminatory attitudes, reinforce household poverty in Bangladesh (CPAN, 2014).

Case Study 3.1: Discrimination against disability as a cause of impoverishment in Bangladesh At the age of 21, Bidhan developed a degenerative condition called Guillain–Barré syndrome (GBS). This autoimmune disease results in acute paralysis in the lower body, which progresses towards the upper limbs and the face. The treatment cost 400,000 to 500,000 taka per year (roughly $5,160–$6,450), which was completely unaffordable for his family. Bidhan started to become completely dependent on other people as he couldn’t even go to the toilet, dress or bath himself without assistance. In the early days of his illness, his family members were very supportive and sympathetic. But when the fnancial condition of the family worsened, they grew tired of looking after him and compassion fatigue set in. Their fnances became so bad that they had to move to his sister’s house in Sajahanpur to reduce their costs, where six of his family members lived in one small room. It was not easy to fnd any other room for rent; when landlords learned about Bidhan’s disability they refused to rent rooms to the family. Bidhan said: The landlords did not want to rent their rooms to our family because they thought we would not be able to pay the house rent since I am

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disabled. The landlords were also afraid about their rent because they saw I have no income – I did not even beg. On the other hand they thought that a disabled person would need much water and therefore the landlord would have less proft. Bidhan’s dependency on others grew and, at the same time, his elder brother got married and moved to his in-laws. Once he had his own child, he was no longer able to help Bidhan as much as he once did. Bidhan’s sister and brother-in-law have very little income and they have to pay the house rent. Their only son (Bidhan’s nephew) is at school, and they want him to complete his studies, but he is Bidhan’s main caregiver in the absence of other family members, which is hampering his schoolwork. Bidhan’s brother and sister can’t afford to care for Bidhan any longer and want him to leave – even telling him to commit suicide when they are angry. They moreover feel that the investment they are making in their son going to school is becoming worthless, as caring for Bidhan distracts him from his studies. Source: Chronic Poverty Advisory Network (2014, p. 22).

Some studies exploring household living conditions have presented a less conclusive picture of the linkages between disability and poverty. A study based on a national survey of living conditions among disabled people in Zambia found that, in all but one province, there were no significant differences between households with and without disabled family members in terms of the number of household possessions (Eide and Loeb, 2006). The exception was Lusaka, where households with disabled family members had slightly fewer possessions. In a separate study (Trani and Loeb, 2010), the findings of the Zambian survey were compared with the findings from a similar survey in Afghanistan, again suggesting little difference between the assets and living conditions of disabled and non-disabled people. These findings suggest that in countries where poverty is widespread, the differences in household wealth between households with and without disabled family members may be less than is sometimes assumed. It should be noted, however, that both of these studies highlighted significant disparities between disabled people and the general population in terms of access to employment, education and health services, suggesting that disabled people were still more vulnerable to multidimensional poverty than the general population.

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Disability

Social and cultural exclusion and stigma

Reduced participation in decision-making and denial of civil and political rights

Vulnerability to poverty and ill-health

Denial of opportunities for economic, social and human development

Deficits in economic, social and cultural rights

Poverty

Figure 3.1 The vicious cycle of poverty and disability Source: Adapted from Department for International Development (DFID), 2000, p. 4.

Some analysts have referred to a ‘vicious cycle of poverty and disability’ (DFID, 2000), as illustrated by Figure  3.1. The diagram shows how disability and poverty tend to cause and reinforce each other, creating a cycle which fows both ways. Disabled people often experience social exclusion, discrimination and a lack of opportunities for economic, social and human development, thus increasing the likelihood that they will fall into poverty. Conversely, poverty increases vulnerability and the risk of ill-health through factors such as poor nutrition and sanitation, dangerous working conditions and lack of access to health services and vaccination programmes, thus increasing the likelihood of disability. Evidence to support the vicious cycle concept emerged from a study based on 92 interviews conducted across various ethnic groups located in urban and rural areas of Kenya (Ingstad and Grut, 2007). The fndings highlighted several mechanisms by which poverty leads to disability, such as the high frequency of accidents among poorer people, who often travel in overloaded vehicles. Similarly, mechanisms by which disability leads to poverty were identifed, such as the tendency for young disabled people to be exploited when they move away from their families.

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An alternative conceptualisation is ofered by Rebecca Yeo (2005), who observes that disability and poverty have much in common and suggests that the DFID diagram tends to obscure the common factors that characterise both disability and poverty due to its emphasis on the two-way causal link. She points out that processes of social and economic exclusion that apply to disabled people, such as limited access to education, employment and basic health services, are very similar to those that apply to poor people in general. For many disabled people, she argues, these issues around poverty, exclusion and discrimination are more pressing than impairmentrelated concerns. This view was supported by a survey of 108 disabled people in Sri Lanka, conducted in the aftermath of the Indian Ocean tsunami, in which the vast majority of those questioned prioritised issues relating to housing, land, livelihoods, education and sanitation rather than the need for impairment-related aids and appliances (Kett et al., 2005). Given this common ground between disability and poverty, Yeo suggests that the relationship between the two would be better represented by the diagram shown in Figure 3.2. This diagram shows how processes of marginalisation, isolation and deprivation, as well as lack of access to many aspects of community life, are common to both disabled and non-disabled poor people. When the commonalities between disability and poverty are highlighted in this way, the implication is that any initiatives designed to reduce poverty in general are likely to beneft disabled people who are poor. Yeo concludes that the disability movement should strive to forge alliances with general campaigns to reduce poverty.6

Disability

Marginalisa˜on; isola˜on; economic; social and poli˜cal depriva˜on; Poverty lack of access to: Pover educa˜on/employment/healthcare legal and poli˜cal processes/ healthy food/adequate housing/ credit

Poverty

Society

Figure 3.2 The relationship between the characteristics of poverty and disability Source: Adapted from Yeo, 2005, p. 21.

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Disability and development gap With the body of research evidence around poverty and disability growing all the time, an increasingly nuanced understanding of the relationship is emerging. For example, Groce and Kett (2013) refer to a ‘disability and development gap’, which relates to the tendency for the poverty gap between disabled people and the general population to widen as countries move out of poverty. Evidence of this trend emerged through a statistical analysis of World Health Survey data from 15 LMICs across Asia, Africa, Latin America and the Caribbean (Mitra et al., 2013). This study found that the diferences in economic welfare between disabled people and the general population were greater in the middle-income countries than in the lowincome countries, despite the existence of fnancial safety nets in some of the middle-income countries, which points to an “adverse relation between economic development and the disability/poverty association” (p. 11). This suggests that as governments and development agencies work towards the eradication of poverty and hunger, in line with the 2030 Agenda, there is a serious danger that the promise to ‘leave no one behind’ will not be fulflled. Capability and the conversion handicap The strength of the relationship between disability and poverty becomes clearer when one considers poverty from the perspective of ‘capability’, defned by Amartya Sen as ‘the freedom to do the things one has reason to value’ (1999, p. 18). According to Sen, poverty is not simply a lack of material wealth but a lack of capability to attain the various components, or ‘substantive freedoms’, that constitute an acceptable standard of living. These are determined by individual priorities but may include, for example, adequate shelter, nourishment, social status, educational achievement, political freedom or being able to form and maintain a family. In other words, levels of poverty are determined not only by the resources that people have but also by their ability to use those resources to live the kind of lives that they value. This broadens our understanding of poverty to take account of the opportunities and choices that people have in life. Disabled people are more likely to be considered poor when poverty is viewed from a capability perspective because they are often denied access to opportunities and the freedom to make choices. They may also be faced with extra costs to convert a given level of resources into desired outcomes. For example, when people with mobility impairments need to travel (or choose to travel), they may well have to use a greater proportion of their income to attain this freedom than would be necessary for the general population due to the extra travel costs that they face, particularly where public transport is inaccessible. Sen (2004) refers to this disadvantage, or the extra cost faced by disabled people in converting a given level of income into well-being, as the ‘conversion handicap’. This concept highlights injustice and places a moral

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responsibility on society to ensure that disabled people are aforded the various forms of additional support necessary to ensure that they have the same freedom as others to live their lives to the full. The value of the capability approach, in terms of understanding the relationship between disability and poverty, is illustrated by a study conducted in South Africa (Graham et al., 2013), which applies a capability lens to the experiences of disabled people living in the poorest parts of Johannesburg. In relation to education, for example, the study found that despite the availability of educational resources the rate of school completion was far lower for disabled people than for the general population, for reasons such as unafordable school fees, inaccessible transport and school buildings that were hard to navigate. Many disabled people were thus denied the opportunity to achieve the educational outcomes that would have enabled them to live the lives that they would have chosen to live. For example, their opportunities to pursue a chosen career or to study at a higher level were reduced. In other words, their capabilities were constrained by the various factors that prevented them from accessing education. This implies that general investments in education will not necessarily reduce poverty among disabled people unless specifc measures are also implemented to enhance the capabilities of disabled people, thus enabling them to fully participate.

Social protection Social protection measures, sometimes referred to as safety nets, are a vital means of alleviating poverty among disabled people. This is refected in the CRPD, which calls on State Parties to ‘recognise the right of persons with disabilities to social protection and to the enjoyment of that right without discrimination on the basis of disability’ (Article 28, Para. 2). Disabled people are thus entitled to social protection, where this is necessary to ensure that their basic needs are met and that adequate living standards are maintained for themselves and their families. Where governments fail to ensure that adequate, disability-inclusive social protection measures are in place, to compensate for the extra costs associated with disability, then disabled people are at greater risk of falling into poverty. Social protection schemes include those targeted specifcally at disabled people and mainstream schemes targeted at poor people in general, which may or may not have an explicit disability focus (Palmer, 2013). Types of assistance vary widely but may include unconditional cash transfers, conditional cash transfers requiring that certain conditions are met (often relating to educational enrolment or health clinic attendance),7 provision of free or subsidised services, provision of assets (such as assistive devices or travel passes) and education or employment quota systems. While such measures are mainly designed to ensure that basic needs are met, social protection may also encompass mechanisms designed to enable households to better manage risk, such as pro-poor insurance schemes (Groce et al., 2008),

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and to generate their own income, such as skills training programmes, job placement schemes and microcredit schemes (Mont, 2010). These types of measures place the emphasis on reducing future poverty through building resilience to future setbacks, investing in human capital and promoting economic participation. At least 168 countries now have schemes in place involving periodic cash transfers to disabled people, although in some countries it is estimated that more than 80 per cent of disabled people in need of welfare services are still not receiving them (UNDESA, 2018). This is often due to the insufcient coverage of social protection schemes, which may occur for a variety of reasons such as inadequate funding and lack of awareness among disabled people themselves. In Bangladesh, for example, where there are estimated to be 14 million disabled people, funding for the disability allowance was sufcient to reach only 160,000 of them (Gooding and Marriot, 2009). In India, surveys conducted in Tamil Nadu and Uttar Pradesh found that 60 per cent of disabled people were unaware of the existence of disability pensions (World Bank, 2009). Other barriers that have been identifed include inaccessible welfare ofces and poorly designed programmes that fail to take account of the specifc needs of disabled people (WHO and World Bank, 2011), insufcient human resource capacity within governments (Kidd et al., 2018) and discriminatory attitudes among programme staf (Mont, 2010). To ensure that social protection schemes are disabilityinclusive, and have sufcient coverage, it is necessary to ensure that schemes match the identifed needs of disabled people and consider the full range of access barriers that they may encounter. It follows that disabled people themselves, who are surely best placed to identify their own needs and the barriers that they face, should be involved in the design of such schemes.

Refection exercise 3.2 Describe some of the mechanisms that create and strengthen the linkages between disability and poverty in a country with which you are familiar. What kind of policies and programmes are needed to break these linkages?

Summary of key points •

Historically, the identities of disabled people have been strongly infuenced by non-disabled people, based on negative stereotypes associated with individual model perspectives of disability. The social model has played an important role in terms of empowering disabled people to adopt more positive identities.

Disability, identity and shared experiences of poverty •

• • • •

•

49

While some commentators refer to a ‘commonality of experience’ among disabled people, based on shared experiences of economic and social deprivation, it should also be recognised that disabled people are individuals with multiple identities. To support disabled people efectively it is necessary to address the common areas of concern, in line with the objectives of the disability movement, while also recognising diversity among disabled people and taking account of individual experiences, needs and priorities. Intersectionality provides a useful lens for analysing the interactions between various social identities, particularly in terms of how experiences of oppression and privilege arise from these interactions. The relationship between disability and poverty has been conceptualised as a mutually reinforcing vicious cycle, while others have highlighted the common ground shared by disabled and non-disabled poor people. Emerging evidence of a ‘disability and development gap’ raises the concerning prospect that disabled people are being left behind as countries move out of poverty. Sen’s capability perspective provides a useful theoretical framework for understanding poverty in terms of a denial of rights and opportunities. Many disabled people experience a ‘conversion handicap’, which relates to the extra costs that they face in converting material resources into desired outcomes. Social protection schemes range from direct cash transfers, designed to alleviate poverty and meet basic needs, to broader measures designed to facilitate socio-economic empowerment and reduce the risk of future poverty. Adequate funding and disability-inclusive approaches are needed to increase the coverage and efectiveness of social protection schemes.

Discussion questions 1) How can disabled people be supported to formulate their own positive identities in a context where negative stereotypes are prevalent, and decisions are often made for them? 2) How can the disability movement take account of difering views and priorities among disabled people while retaining a sense of unity and collective identity? 3) This chapter has presented two diagrammatic representations of the relationship between disability and poverty. Which of these best illustrates the relationship and why?

Suggested further reading Gargett, A., Barton, R., Llewellyn, G., Tsaputra, A., Soe, S. and Tawake, S. (2016) ‘Global Cultures and Understandings of Disability’. In Iriarte,

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E., McConkey, R. and Gilligan, R. (Eds.) Disability and Human Rights: Global Perspectives. London: Palgrave, 68–80. Katsui, H. and Mojtahedi, M. (2015) ‘Intersection of disability and gender: Multi-layered experiences of Ethiopian women with disabilities’. In Development in Practice 25(4): 563–573. Munsaka, E. and Charnley, H. (2013) ‘We do not have chiefs who are disabled: Disability, development and culture in a continuing complex emergency’. In Disability and Society 28(6): 756–769.

Notes 1 2 3 4 5 6 7

See Chapter 5 for further discussion around the growth of the disability movement. See Suggested further reading. See Suggested further reading. See Suggested further reading. See Chapter 11. An example of such an alliance is given in Case Study 5.1, Chapter 5. See Chapter 7 for further discussion around cash transfers.

References Banks, L.M., Morgon, H. and Pollack, S. (2017) ‘Poverty and disability in low- and middle-income countries: A systematic review’. In PLoS One 13(9): 1–19. Barnes, C. (2001) Rethinking Care from the Perspective of Disabled People. Conference Report and Recommendations. WHO Disability and Rehabilitation Team. Retrieved on 17 August 2021 from http://whqlibdoc.who.int/hq/2001/a78624.pdf Bayat, M. (2014) ‘Understanding views of disability in the Cote d’Ivoire’. In Disability & Society 29(1): 30–43. BDDG (Bond Disability and Development Group) (2017) Stigma, Disability and Development. Retrieved on 17 September  2021 from www.bond.org.uk/sites/ default/fles/resource-documents/stigma_disability_and_development.pdf Bickenbach, J. (2009) ‘Disability, culture and the UN convention’. In Disability and Rehabilitation 31(4): 1111–1124. Braathen, S.H. and Kvam, M.H. (2008) ‘Can anything good come out of this mouth? Female experiences of disability in Malawi’. In Disability and Society 23(5): 461–474. Brisenden, S. (1986/1998) ‘Independent Living and the Medical Model of Disability’. In Shakespeare, T. (Ed.) The Disability Reader. London: Continuum, 20–27. Charlton, J. (1998) Nothing About US without Us. Berkeley: University of California Press. Cobley, D. (2013) Disability and Economic Empowerment in Kenya and India. Saarbrucken: Lambert Academic Publishing Ltd. Collins, P.H. (1990) Black Feminist Thought: Knowledge, Consciousness and the Politics of Empowerment Boston: Unwyn Hyman. COVID-19 DRM (Disability Rights Monitor) (2020) Disability Rights during the Pandemic. Retrieved on 21 July 2021 from www.internationaldisabilityalliance. org/sites/default/fles/disability_rights_during_the_pandemic_report_web_pdf_1.pdf CPAN (Chronic Poverty Advisory Network) (2014) The Chronic Poverty Report 2014–2015: The Road to Zero Extreme Poverty. London: Overseas Development Institute.

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Crenshaw, K.W. (1989) ‘Demarginalizing the intersection of race and sex: A black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics’. University of Chicago Legal Forum 1989(8): 139–167. Crenshaw, K.W. (1991) ‘Mapping the margins: Intersectionality, identity politics, and violence against women of color’. In Stanford Law Review 46(6): 1241–1299. Dean, L., Tolhurst, R., Khanna, R. and Jehan, K. (2017) ‘You’re disabled, why did you have sex in the frst place? An intersectional analysis of experiences of disabled women with regard to their sexual and reproductive health and rights in Gujarat State, India’. In Global Health Action 10(suppl 2): 33–42. de la Rey, C. (1997) ‘South African feminism, race and racism. Agenda: Empowering women for gender equity’. In Agenda 13(32): 6–10. Department for International Development (DFID) (2000) Disability, Poverty and Development. London: DFID. Dunn, D.S. and Burcaw, S. (2013) ‘Disability identity: Exploring narrative accounts of disability’. In Rehabilitation Psychology 58(2): 148–157. Eide, A. and Loeb, M. (Eds.) (2006) Living Conditions among People with Activity Limitations in Zambia: A National Representative Study. Oslo: SINTEF. Retrieved on 8 August 2021 from www.sintef.no/en/publications/publication/1268894/ Gargett, A., Barton, R., Llewellyn, G., Tsaputra, A., Soe, S. and Tawake, S. (2016) ‘Global Cultures and Understandings of Disability’. In Iriarte, E., McConkey, R. and Gilligan, R. (Eds.) Disability and Human Rights: Global Perspectives. London: Palgrave, 68–80. Gooding, K. and Marriot, A. (2009) ‘Including persons with disabilities in social cash transfer programmes in developing countries’. In Journal of International Development 21: 685–698. Graham, L., Moodley, J. and Selipsky, L. (2013) ‘The disability-poverty nexus and the case for a capabilities approach: Evidence from Johannesburg, South Africa’. In International Journal of Disability and Society 28(3): 324–337. Grech, S. (2008) ‘Living with disability in rural Guatemala: Exploring connections and impacts on poverty’. In International journal of Disability, Community and Rehabilitation 7(2). Groce, N. (2010) ‘Foreword’. In Barron, T. and Ncube, J. (Eds.) Poverty and Disability. London: Leonard Cheshire Disability. Groce, N., del Ninio, C., Tesliuc, E. and Ouerghi, A. (2008) For Protection and Promotion: The Design and Implementation of Efective Safety Nets. Washington: World Bank. Groce, N. and Kett, M. (2013). The Disability and Development Gap. Working Paper Series No. 21. London: Leonard Cheshire Disability and Inclusive Development Centre. Retrieved on 5 May 2020 from https://papers.ssrn.com/sol3/papers. cfm?abstract_id=3385372 Ingstad, B. (2001) ‘Disability in the Developing World’. In Albrect, G.L., Seelman, K. and Bury, M. (Eds.) Handbook of Disability Studies. London: SAGE. Ingstad, B. and Grut, L. (2007) See me, and Do Not Forget Me: People with Disabilities in Kenya. Washington: World Bank. Retrieved on 16 July  2021 from https://hpod.law.harvard.edu/pdf/SeemeKenya2.pdf Ingstad, B. and Whyte, S. (Eds.) (1995) Culture and Disability. Berkeley and Los Angeles: University of California Press. Kandasamy, N., Soldatic, K. and Samararatne, D. (2017) ‘Peace, justice and disabled women’s advocacy: Tamil women with disabilities in rural post-confict Sri Lanka’. In Medicine, Confict and Survival 33(1): 41–59.

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Katsui, H. and Mojtahedi, M. (2015) ‘Intersection of disability and gender: Multilayered experiences of Ethiopian women with disabilities’. In Development in Practice 25(4): 563–573. Kett, M., Stubbs, S., Yeo, R., Deshpande, S. and Cordeiro, V. (2005) Disability in Confict and Emergency Situations: Focus on Tsunami-afected Areas. IDDC Research Report. Disability Knowledge and Research Programme. Retrieved on 13 November  2021 from www.gov.uk/research-for-development-outputs/disabilityin-conflict-and-emergency-situations-focus-on-tsunami-affected-areas-idccresearch-report Kidd, S., Wapling, L., Bailey-Athias, D. and Tran, A. (2018) Social Protection and Disability in South Africa. Working Paper. Orpington: Development Pathways. Kidd, W. and Teagle, A. (2012) Culture & Identity (2nd Edition). Basingstoke: Palgrave Macmillan. Leonard, W. and Mann, R. (2018) The Everyday Experiences of Lesbian, Gay, Bisexual, Transgender and Intersex (LGBTI) People Living with Disability. No. 111, GLHV@ARCSHS. Melbourne: La Trobe University. Maroto, M., Pettinicchio, D. and Patterson, A.C. (2019) ‘Hierarchies of Categorical Disadvantage: Economic Insecurity at the Intersection of Disability, Gender and Race’. In Gender and Society 33(1): 64–93. Matsumoto, D. (1996) Culture and Psychology. Pacifc Grove: Brooks/Cole. Mehrotra, N. and Soldatic, K. (2021) ‘COVID-19 in South Asia: State practices, responses and the experiences of persons with disabilities within the region’. In Disability and the Global South 8(1): 1873–1879. Miles, M. (1999) ‘Can Formal Disability Services Be Developed with South Asian Historical and Conceptual Foundations’. In Stone, E. (Ed.) Disability and Development: Learning from Action and Research on Disability in the Majority World. Leeds: The Disability Press. Mitra, S., Posarac, A. and Vick, B. (2013) ‘Disability and poverty in developing countries’. In World Development 41: 1–18. Mont, D. (2010) ‘Social Protection and Disability’. In Barron, T. and Ncube, J. (Eds.) Poverty and Disability. London: Leonard Cheshire International, 317–339. Moodley, J. and Graham, L. (2015) ‘The importance of intersectionality in disability and gender studies’. Agenda 29(2): 24–33. Morris, J. (1998) Feminism, Gender and Disability. Paper presented at seminar in Sydney, Australia, February. Retrieved on 6 November 2021 from https://disabilitystudies.leeds.ac.uk/wp-content/uploads/sites/40/library/morris-gender-anddisability.pdf Mostert, M.P. (2016) ‘Stigma as a Barrier to the Implementation of the Convention on the Rights of Persons with Disabilities in Africa’. In Ngwena, C., Grobbelaardu Plessis, I., Combrinck, H. and Kamga, S.D. (Eds.) African Disability Rights Yearbook Volume 4 2016. Pretoria: Pretoria University Law Press, 2–24. Munsaka, E. and Charnley, H. (2013) ‘We do not have chiefs who are disabled: Disability, development and culture in a continuing complex emergency’. In Disability and Society 28(6): 756–769. Murugami, M. (2009) ‘Disability and identity’. In Disability Studies Quarterly 29(4). Retrieved on 4 April 2021 from http://dsq-sds.org/article/view/979/1173 Oliver, M. (1983) Social Work with Disabled People. Basingstoke: Macmillan. Oliver, M. (1990) The Politics of Disablement. Basingstoke: Macmillan. Pachankis, J.E. (2007) The psychological implications of concealing a stigma: A cognitive-afective-behavioural model’. In Psychological Bulletin 133(2): 328–345.

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Pal, G.C. (2011) ‘Disability, intersectionality and deprivation: An excluded agenda’. In Psychology and Developing Societies 23(2): 159–176. Palmer, M. (2013) ‘Social protection and disability: A  call for action. In Oxford Development Studies 41(2): 139–154. Powers, T. (2008) Recognising Ability: The Skills and Productivity of Persons with Disabilities. Employment Working Paper No. 3. Geneva: ILO. Retrieved on 27 October  2021 from www.ilo.org/public/english/employment/download/wpaper/ wp3.pdf Rohwerder, B. (2018) Disability Stigma in Developing Countries. K4D Helpdesk Report. Brighton: Institute for Development Studies. Sen, A. (1999) Development as Freedom. Oxford: Oxford University Press. Sen, A. (2004) Disability and Justice. Keynote Speech. 2nd International Disability Conference, World Bank, 30 November – 1 December. Shakespeare, T. (1996) ‘Disability, Identity and Diference’. In Barnes, C. and Mercer, G. (Eds.) Exploring the Divide. Leeds: The Disability Press, 3–15. Shaw, L., Chan, F. and McMahon, B. (2012) ‘Intersectionality and disability harassment: The interactive efects of disability, race, age, and gender’. Rehabilitation Counselling Bulletin 55(2): 82–91. Trani, J. and Loeb, M. (2010) ‘Poverty and disability: A vicious circle? Evidence from Afghanistan and Zambia’. In Journal of International Development 24: S19–S52. UN (United Nations) (2006) Convention on the Rights of Persons with Disabilities and Optional Protocol. Washington: United Nations. Underhill, J. (2012) Ethnolinguistics and Cultural Concepts: Truth, Love, Hate and War. Cambridge: Cambridge University Press. UNDESA (United Nations Department of Economic and Social Afairs) (2018) Disability and Development Report: Realising the SDGs, by and for Persons with Disabilities. New York: United Nations. WHO (World Health Organization) and World Bank (2011) World Report on Disability. Geneva: WHO. Retrieved on 22 October  2021 from http://whqlibdoc. who.int/publications/2011/9789240685215_eng.pdf World Bank (2007) Social Analysis and Disability: A Guidance note. Washington: World Bank. Retrieved on 12 October 2021 from http://hpod.org/pdf/SAnalysisDis. pdf World Bank (2009) People with Disabilities in India: From Commitments to Outcomes. Human Development Unit, South Asia Region. Washington: World Bank. Yeo, R. (2005) Disability, Poverty and the New Development Agenda. London: DFID. Retrieved on 4 July 2021 from www.dfd.gov.uk/r4d/PDF/Outputs/Disability/ RedPov_agenda.pdf

4

International agreements on disability

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) was adopted by the General Assembly on 13 December 2006 and came into force on 3 May  2008. This marked the culmination of a long struggle, led by the international disability movement, for a legally binding international treaty that would promote and protect the rights of disabled people to participate in society on an equal basis with others. The CRPD represented a landmark achievement for the disability movement, refecting a growing understanding that, despite the prior existence of international human rights treaties that implicitly included disabled people, as well as a number of non-binding agreements and declarations on disability, disabled people around the world continued to experience widespread discrimination and a lack of respect for their human rights. This chapter begins with a review of relevant international agreements that helped to pave the way for the CRPD, starting with the 1948 Universal Declaration of Human Rights (UDHR), a historic post-war declaration that continues to serve as a foundation for all human rights law. This is followed by a discussion around the CRPD itself, in terms of both its content and some of the implementation challenges that it faces. Some of the most signifcant international agreements that have followed the CRPD are then considered, most notably the 2030 Agenda for Sustainable Development. This global blueprint for development, built around the Sustainable Development Goals (SDGs), is analysed in terms of the extent to which it takes account of disability and the progress towards achieving the goals that has been made so far. Finally, some important regional agreements, tailored to address specifc disability concerns and priorities in diferent parts of the world, are reviewed. The international and regional agreements that are covered in this chapter are set out in Table 4.1. Table 4.1 Timeline of international agreements and events 1948 1966 1971 1975 1981 1982

Universal Declaration of Human Rights International Bill of Human Rights UN Declaration on the Rights of Mentally Retarded Persons Declaration on the Rights of Disabled Persons International Year of Disabled Persons World Programme of Action

DOI: 10.4324/9781003256038-4

International agreements on disability 1948 1983–1992 1993 1995 1997 1999 2000 2000 2002 2004 2006 2011 2012 2015 2015 2016 2018

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Universal Declaration of Human Rights UN Decade of the Disabled UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities Copenhagen Declaration on Social Development Ottawa Treaty (Landmines) Inter-American Convention for the Elimination of All Forms of Discrimination against Persons with Disabilities UN Resolution 2000/51 Millennium Development Goals (MDGs) Sapporo Declaration Global Partnership on Disability and Development (GPDD) UN Convention on the Rights of Persons with Disabilities (CRPD) and Optional Protocol United Nations Partnership on the Rights of Persons with Disabilities (UNPRPD) Incheon Strategy Addis Ababa Financing Agenda 2030 Agenda for Sustainable Development Programme of Action for the Decade of the Americas for the Rights and Dignity of Persons with Disabilities (2016–2026) Protocol to the African Charter on Human and People’s Rights on the Rights of Persons with Disabilities in Africa

Universal Declaration of Human Rights (1948) Following the formation of the United Nations (UN) in 1945, as the world emerged from the horrors of the Second World War, the UDHR was the frst major global declaration on the basic rights to which all are entitled. This famous declaration makes only one specifc reference to disability, proclaiming the right to security ‘in the event of unemployment, sickness, disability’ (UN, 1948, Article 25). While the other articles do not refer to disability, they clearly do not exclude disabled people either. Article 23, for example, declares that ‘everyone has the right to work, to free choice of employment, to just and favourable conditions of work and to protection against unemployment’. The implicit inclusion of disabled people in the UDHR is underlined by the following statement from Bengt Lindqvist, a stalwart of the international disability movement and the UN’s Special Rapporteur on Disability from 1994 to 2002:

Disability and human rights Disability is a human rights issue. So long as people with disabilities are denied the opportunity to participate fully in society, no one can claim that the objectives of the Universal Declaration of Human Rights have been achieved. (Lindqvist, 1999)

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In 1966, the UDHR became part of the International Bill of Human Rights, alongside the International Covenant on Civil and Political Rights (ICCPR) and the International Covenant on Economic, Social and Cultural Rights (ICESCR). These two covenants were legally binding treaties, providing greater detail on the rights set out in the UDHR and again emphasising the universality of human rights and thus the implicit inclusion of disabled people. The ICCPR, for example, states that ‘recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world’ (my emphasis, UN, 1966, Preamble).

United Nations Declaration on the Rights of Mentally Retarded Persons (1971) This was the frst international agreement to specifcally address the rights of people with intellectual impairments and mental health issues, referred to using the now-outdated terminology of ‘mentally retarded persons’. The declaration recognised that ‘the mentally retarded person should have, to the maximum degree of feasibility, the same rights as all other human beings’ (UN, 1971, Paragraph 1). Importantly, these rights extended to those requiring institutional care, which ‘should be provided in surroundings and other circumstances as close as possible to those of normal life’ (Paragraph 4).

United Nations Declaration on the Rights of Disabled Persons (1975) This declaration promoted the political and civil rights of all disabled people while also highlighting the need to consult with disabled people’s organisations (DPOs) ‘in all matters regarding the rights of disabled persons’ (UN, 1975, Point 12). This provided an early indication that the principle of actually involving disabled people themselves in the process of promoting and protecting disability rights was beginning to achieve international recognition.

World Programme of Action (WPA) (1982) Following the International Year of Disabled Persons in 1981, which was marked by various research projects, conferences and policy recommendations, the United Nations adopted the World Programme of Action Concerning Disabled Persons (WPA) in December 1982. This programme efectively restructured disability policy into three broad areas – prevention, rehabilitation and equalisation of opportunities – and advocated long-term, multi-sectoral strategies that could be integrated into national policies (UN, 1983). The UN General Assembly also stipulated that 1983–1992 would be known as the UN Decade of Disabled Persons, in which Member States would be encouraged to implement the WPA.

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The WPA represented an important landmark because it was the frst major international agreement to view disability from a social model perspective, emphasising the role of societal barriers in creating and reinforcing disability. The guiding principle of the WPA was the concept of ‘equalisation of opportunities’, which was about promoting the full participation of disabled people in all aspects of economic and social life, to achieve equality. This declaration represented mainstream acceptance of a newly perceived reality – that medical solutions alone would not be sufcient to meet the needs and aspirations of disabled people and that ‘societies have to identify and remove obstacles to their full participation’ (UN, 1983, Paragraph 22).

United Nations Standard Rules (1993) The UN Decade of Disabled Persons (1983–1992) culminated in the introduction of the UN Standard Rules on the Equalisation of Opportunities for Persons with Disabilities. This set of guidelines was designed to ‘ensure that girls, boys, women and men with disabilities, as members of societies, may exercise the same rights and obligations as others’ (UN, 1993, Paragraph 15). Based on the same guiding principles as the WPA, the aim was essentially to promote inclusion and eliminate all forms of disability discrimination. The 22 rules included four relating to ‘preconditions’ for equal opportunities (such as awareness raising), eight relating to target areas for equal participation (such as education and employment) and ten relating to implementation measures (such as information and research, economic policies and international cooperation). Also, the United Nations appointed a new Special Rapporteur, Bengt Lindqvist, to monitor implementation and provide regular reports. The Standard Rules were not compulsory, although the United Nations envisaged that they would become ‘international customary rules when they are applied by a great number of states with the intention of respecting a rule in international law’ (Paragraph 14). Their importance was also underlined by a later UN resolution (2000/51), which stated that any violation of the fundamental principle of equality or any discrimination or other negative diferential treatment of persons with disabilities inconsistent with the United Nations Standard Rules on the Equalisation of Opportunities for Persons with Disabilities is an infringement of the human rights of persons with disabilities. (UN, 2000a, Paragraph 1) Some positive outcomes in relation to the Standard Rules were highlighted by Lindqvist (1998) in a statement to the General Assembly, in which he summarised the fndings of two global surveys that had been conducted under his supervision. He reported that ‘a considerable number of governments

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have adopted new legislation, made plans of action or otherwise initiated a further development of their policies, based on the Standard Rules’, but also acknowledged that disabled people were still facing discrimination in many areas of life. Lindqvist refrained from calling for discussions on a ‘special convention’ on disability, however, arguing that more time was needed for strengthening disability rights through existing channels (O’Reilly, 2007).

Copenhagen Declaration on Social Development (1995) The 1995 World Summit for Social Development was attended by 117 ‘heads of states’ or governments, making it the largest gathering of world leaders that had ever taken place up until then. The conference ended with the adoption of the Copenhagen Declaration and Programme of Action, which set out a range of social development objectives to be achieved through sustainable policies that promoted human rights and the empowerment of vulnerable groups. The tone of the declaration was set in the introduction, with the acknowledgement that in both economic and social terms, the most productive policies and investments are those that empower people to maximise their capacities, resources and opportunities. (UN, 1995, Paragraph 7) The declaration had a clear disability dimension, recognising that disabled people are ‘too often forced into poverty, unemployment and social isolation’ (UN, 1995, Paragraph 16(h)), and the Programme of Action recommended specifc measures to promote the participation of disabled people in areas such as education, employment, independent living and access to assistive technology. The World Bank (2004) has since acknowledged the contribution of the Copenhagen Declaration in helping to ensure that the Bank’s support for poverty reduction includes an emphasis on vulnerable groups, including disabled people.

Ottawa Treaty (1997) The 1997 Convention on the Prohibition of the Use, Stockpiling, Production and Transfer of Anti-Personnel Mines and on their Destruction (also known as the Ottawa Treaty or the Mine Ban Treaty), which entered into force in 1999, imposed a complete ban on the use of anti-personnel landmines for ratifying states, as well as calling for the destruction of stockpiled and emplaced mines. Anti-personnel landmines are weapons of ‘mass and indiscriminate destruction’ (Thakur and Malley, 1999, p. 278) killing and maiming both soldiers and civilians, often long after conficts have ended. Also, they hamper the distribution of humanitarian aid, disrupt the movement of refugees during times of confict and deprive communities of safe access to land and vital infrastructure.

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The Ottawa Treaty was much heralded for the involvement of civil society, led by the International Campaign to Ban Landmines (ICBL), in rapidly negotiating its terms. The ICBL was a fairly loose transnational coalition of governmental and non-governmental organisations (NGOs), including disability-focused NGOs, which was established in 1992 with the aim of freeing the world of anti-personnel landmines and advocating on behalf of landmine survivors. The campaign’s coordinator and main spokesperson, Jody Williams, declared that the ICBL’s infuential role in the Ottawa Process confrmed civil society as the ‘world’s new superpower’ (Axworthy, 1998, p. 5). However, Short (1999) contends that civil society participation was actually quite ‘narrow and centralised’ (p. 495), with the ICBL usually represented by the single voice of its spokesperson and the vast majority of NGOs involved in the Treaty Signing Forum representing Western industrialised nations. While the Ottawa Process may have beneftted from being a media-friendly issue, successfully framed by the ICBL as a humanitarian crisis rather than a military issue, there is no doubt as to its signifcance in terms of addressing one of the most devastating human causes of impairment. There are now 164 State Parties to the treaty (ICBL, undated), representing a broad international consensus. However, there are no verifcation or compliance mechanisms (Thakur and Malley, 1999), and key players, such as the United States, China and Russia, are yet to sign up to its terms. With insurgent and terrorist groups also outside the reach of the treaty, and unexploded munitions creating new hazards in confict areas on a daily basis, the landmine threat is still very real.

Millennium Declaration (2000) This famous declaration, adopted by all 189 UN Member States, set out a blueprint for a global partnership aimed at ensuring that ‘globalisation becomes a positive force for all the world’s people’ (UN, 2000b, Paragraph 5). This global partnership would focus on promoting peace and reducing poverty by working towards the achievement of the eight Millennium Development Goals (MDGs), shown in Box 4.1, by 2015.

Box 4.1 Goal 1: Goal 2: Goal 3: Goal 4: Goal 5: Goal 6: Goal 7: Goal 8:

The Millennium Development Goals Eradicate extreme poverty and hunger Achieve universal primary education Promote gender equality Reduce child mortality Improve maternal health Combat HIV, malaria and other diseases Ensure environmental sustainability Develop a global partnership for development

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While the declaration refers to various vulnerable social groups, including women, children and people with HIV/AIDS, there is no specifc mention of disability. Former United Nations Secretary-General Ban Ki-Moon has acknowledged the error of ignoring disability in the wording of the Millennium Declaration, and its accompanying guidelines, pointing out that, ‘as a consequence, periodic reviews of the MDGs that are under way within the United Nations do not include reference to disability issues’ (UN, 2009, p. 3). His report concluded that these omissions, together with the difculties in obtaining sufcient data on the disability situation in many countries, had made it very difcult to assess the impact of the MDGs on disabled people.

Sapporo Declaration (2002) In 2002, Disabled People’s International (DPI)1 held a gathering in Sapporo, Japan, involving over 3,000 delegates representing 109 countries. This conference resulted in the release of the Sapporo Declaration, which highlighted various forms of discrimination and deprivation experienced by disabled people around the world while also noting that ‘rights under existing UN Conventions are generally ignored or marginalised in monitoring procedures’ (DPI, 2002). Signifcantly, this declaration also called for a new rights-based convention that would be formulated with the full involvement of disabled people, as highlighted in Box 4.2.

Box 4.2 •

• •

•

Excerpt from the Sapporo Declaration

We demand a specifc international convention as an instrument of binding norms to protect and respect the full enjoyment of our human rights. This convention must be human rights in nature and not economic and social based. Disabled people demand a voice of our own in the development of this instrument. We must be consulted at all levels on all matters that concern us. We urge all countries to support the formulation and adoption of this convention and we encourage all disabled people and their organisations to educate the public and their political representatives on the need and benefts of a convention. In addition: We demand that every country adopt and implement anti-discrimination legislation and policies that ensures the equalisation of opportunity for disabled people.

Source: Disabled People’s International, 2002.

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United Nations Convention on the Rights of Persons with Disabilities (CRPD) (2006) Often referred to as the frst major human rights treaty of the twenty-frst century, the CRPD places legal obligations on ratifying states to promote and protect the rights of disabled people. It is important to emphasise here that, in general, these are not new rights.2 However, the introduction, for the frst time, of a legally binding instrument to promote the universal inclusion of disabled people provided an opportunity for real progress to be made in terms of enabling disabled people to access their rights and for putting into practice some of the recommendations made in previous agreements. The CRPD has taken its place alongside other important UN treaties protecting the human rights of vulnerable social groups, as shown in Table 4.2. Preparations for the CRPD began in 2001, when the Mexican government submitted a draft text and proposed the formation of an ad hoc committee. This committee was formally established later in the same year with a mandate to consider the proposed convention and to oversee the drafting process. An important feature of this process was the involvement of civil society, including a large number of DPOs and disability-focused NGOs that joined forces to form the International Disability Caucus (IDC). This coalition participated as an equal partner throughout the negotiation process and was also present at subsequent events, such as the signing ceremony in 2007 (Schulze, 2010). The CRPD consists of 50 articles, addressing an array of civil, economic, social, cultural and political rights, as summarised in Box 4.3. These basic human rights are founded on eight general principles, set out in Article 3, as shown in Box 4.4. As the wording of these general principles implies, the CRPD refects the trend, established in previous international agreements, of framing disability as a human rights issue, thus challenging perceptions of disability as a medical problem or disabled people as passive recipients of charity. The social model of disability3 is not explicitly referred to, but its infuence is Table 4.2 Human rights treaties protecting the rights of vulnerable groups 1965 1979 1984 1989 1990 2006

Anti-Racism Convention (CERD) Women’s Rights Convention (CEDAW) Convention Against Torture and Other Inhumane or Degrading Treatment or Punishment (CAT) Convention on the Rights of Children (CRC) Convention on the Rights of Migrant Workers (CRMW) Convention on the Rights of Persons with Disabilities (CRPD)

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Box 4.3 • • • • • • • • • • • • • • • • •

Disability rights covered by the CRPD

Equality before the law without discrimination (Article 5) Rights to life, liberty and security (Articles 10 and 14) Equal recognition before the law and legal capacity (Article 12) Freedom from torture (Article 15) Freedom from exploitation, violence and abuse (Article 16) Right to respect physical and mental integrity abuse (Article 17) Freedom of movement and nationality (Article 18) Right to live in the community (Article 19) Freedom of expression and opinion (Article 21) Respect for privacy (Article 22) Respect for home and the family (Article 23) Right to education (Article 24) Right to health (Article 25) Right to work (Article 27) Right to adequate standard of living (Article 28) Right to participate in political and public life (Article 29) Right to participation in cultural life (Article 30)

Source: United Nations, 2006.

Box 4.4 • • • • • • • •

CRPD General Principles (Article 3)

Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons Non-discrimination Full and efective participation and inclusion in society Respect for diference and acceptance of persons with disabilities as part of human diversity and humanity Equality of opportunity Accessibility Equality between men and women Respect for the evolving capacities of children with disabilities and respect for the rights of children with disabilities to preserve their identities

Source: United Nations, 2006.

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plain to see. Disability is described as arising from ‘the interaction between persons with impairments and attitudinal and environmental barriers’ (Preamble (e)), and the treaty places a frm obligation on governments to take the necessary steps to remove the societal barriers that hinder the participation of disabled people. Article 8 (Awareness-raising), for example, calls on State Parties to tackle the ‘stereotypes, prejudices and harmful practices’ (Paragraph 1(b)) that exist within society. The CRPD has now been signed and ratifed by the vast majority of nation states, representing a near-global consensus. Signatory of the CRPD means that governments are committed to the principles of the treaty, although they are not legally required to adhere to them. Ratifcation, on the other hand, means that the treaty has been approved through an appropriate national process, signifying its acceptance as a binding piece of international law. Ratifying states thus have a legally binding commitment to facilitate the implementation of the CRPD within their own boundaries. This implementation process involves ensuring that national legislation is consistent with the CRPD, and that appropriate policies, programmes and evaluation mechanisms are in place. The CRPD recognises that some countries may require various kinds of assistance to support the implementation process, either through international development programmes or through general cooperation between states. Article 32, titled ‘International Cooperation’, addresses this issue, calling for measures such as providing, as appropriate, technical and economic assistance, by facilitating access to and sharing of accessible and assistive technologies, and through the transfer of technologies. (Paragraph 1(d)) This article provides a clear framework for the donor community, including international development agencies and governments of the Global North, to support and encourage governments of the Global South to sign, ratify and implement the CRPD. One example of international cooperation, originally launched in 2004 but since refocused to support implementation of the CRPD, is the World Bank’s Global Partnership on Disability and Development (GPDD). This partnership aims to raise awareness on disability and strengthen cooperation among various stakeholders, including governments of the Global South, donor agencies, UN agencies, NGOs, DPOs and academic institutions. These stakeholders were brought together in an informal coordinating mechanism, specifying clear roles for each within a framework designed to advance the inclusion of disability issues in mainstream social and economic development (Coleridge, 2007). The GPDD is backed by a multi-donor trust fund which was set up to support stakeholders in the implementation of

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various initiatives, including networking forums, theme-based e-discussions, knowledge sharing, research studies and capacity-building projects (Lord et al., 2010). Optional protocol To monitor the global implementation of the CRPD, and to deal with issues relating to non-compliance, the United Nations also established the Committee on the Rights of Persons with Disabilities. The working procedures of this committee are set out in an Optional Protocol, accompanying the main convention, which contains an agreement that all State Parties to the Optional Protocol recognise the competence of the Committee to pass judgement on any perceived violations of the CRPD within their own countries. Individuals or groups within these countries are thus provided with an avenue for bringing their grievances to the Committee, once ‘all available domestic remedies’ (Article 2, Paragraph (d)) have been exhausted. It should be noted, however, that all countries that have ratifed the CRPD have a right to make ‘declarations’, which relate to how they interpret particular terms of the agreement, or ‘reservations’, which means that they can efectively opt out of certain clauses. This means that any investigation of perceived violations would need to take account of these declarations and reservations. The UK, for example, has reserved the right not to apply obligations in relation to equal treatment in employment, under the terms of the CRPD, to admission to the armed forces. The establishment of the Committee provides a useful focal point within the United Nations system for monitoring the implementation of the CRPD and drawing attention to compliance issues within Member States. The Optional Protocol provides no details of any signifcant penalties for noncompliance, however, other than a commitment on behalf of the Committee to ‘forward its suggestions and recommendations, if any, to the State Party concerned and to the petitioner’ (Article 5).

CRPD implementation barriers As with all human rights treaties, the task of ensuring that agreements on paper make a real and lasting diference to the lives of ordinary people, particularly those who are poor and marginalised, is hugely challenging. This section outlines some of the key challenges facing governments, development agencies and disability organisations as they work towards efective implementation of the CRPD. Lack of adequate data The CRPD acknowledges a widespread lack of statistical and research data on disability, calling for State Parties to collect new data to support

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its implementation (Article 31). Several years after it came into force, the monitoring committee established by the Optional Protocol continued to raise concerns about ‘absent, outdated or inconsistent disaggregated data collected on persons with disabilities’ (UN, 2015a, p.  23). National data collection is hampered by difering understandings around the meaning of disability itself, fawed approaches to collecting data and stigma surrounding disability (Mont, 2007). Estimates of disability prevalence, particularly those produced by national censuses, are often unrealistically low, thus weakening the case for governments to make adequate budget allocations. A  lack of baseline data on particular disability issues (such as the number of disabled children excluded from schooling, for example) makes the task of monitoring progress on these issues extremely difcult. Lack of political will Nation states that have ratifed the CRPD have a clear duty to take the steps necessary to ensure efective implementation. However, a recent sessional report of the CRPD (UN, 2015a) lists a number of failures on the part of governments in relation to these necessary steps. The report notes that many states have failed to defne an implementation mechanism, and where mechanisms have been established they are often under-resourced and do not function properly. Additionally, the report notes that many governments continue to defne disability in medical terms, have failed to set up appropriate mechanisms for consulting with DPOs and have failed to establish efective procedures to combat disability discrimination. Meekosha and Soldatic (2011) observe that many states are guilty of abusing human rights themselves, or simply ignoring them, thus raising further doubts over the extent to which the governments of such states can be expected to fulfl the role of upholding human rights.4 Weak governance structures Where governance structures are weak, the capacity of states to implement rights-based laws may be undermined, even when political will is present. In the Ghanaian context, for example, Grischow (2015) describes how those in power often demand ‘under-the-table’ payments to exercise their duties, thus creating fnancial barriers that may prevent many disabled people, who are typically among the poorest members of society, from accessing their rights. He goes on to argue that, in the absence of a social transformation that would break the reliance of weaker members of society on connections with more powerful patrons, the existence of instruments such as the CRPD and national disability legislation will ‘not automatically produce equal access to entitlements for all disabled Ghanaians’ (p. 110).

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Lack of DPO capacity DPOs have played an unprecedented role in negotiating the terms of the CRPD and perhaps have an even more important role to play in monitoring its implementation, as set out in Article 33 (National Implementation and Monitoring). Some have risen to this challenge admirably. In the Philippines, for example, a coalition comprising over 20 DPOs and disability-focused NGOs has engaged closely with local and national government agencies on various disability issues, particularly around legislative reform and budget allocations, while also producing an excellent independent report on the state of implementation of the CRPD, highlighting numerous areas of concern (Philippines Coalition, 2013). However, many national DPOs lack the necessary capacity to efectively lobby their own governments and hold them to account due to a lack of leadership skills and resources (Mittler, 2016) as well as, in many cases, a limited understanding of legal and policymaking processes (Lang et al., 2011).5 Charity outlook Despite increased international recognition of disability as a rights-based issue, as refected in the CRPD, the recognition of disability rights in everyday life is still hampered by a deep-rooted charity or welfare culture in many countries. The activities of civil society organisations, including some DPOs, often refect this approach, and even politicians who use rightsbased rhetoric do not always fully understand disability from a rightsbased perspective (Lang et al., 2011). In some countries, a long history of missionary and charity-based service delivery has led to a culture of dependency among disabled people themselves (Cobley, 2012; Dos SantosZingale and McColl, 2006), thus reinforcing their reliance on welfarebased approaches. Negative attitudes, prejudice and stigma Negative attitudes, prejudice and stigma, often driven by a lack of understanding and awareness around the causes of disability, contribute to the discrimination and exclusion that is widely experienced by disabled people around the world (Rohwerder, 2018). Where negative perceptions continue to prevail, the task of implementing legislation and policies designed to facilitate the full and equal participation of disabled people becomes immeasurably harder. For example, a participatory study conducted in Binga, an impoverished district of north-west Zimbabwe, found that ‘despite the existence of pro-disability legislation and policy in Zimbabwe, disabled participants in Binga experienced systematic exclusion from community life, predicated on cultural beliefs about the meaning of disability’ (Munsaka and Charnley, 2013, p. 767).

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Refection exercise 4.1 List some of the barriers to the efective implementation of the CRPD in your own country or a country with which you are familiar. Then make a list of measures that could be taken to tackle these barriers. For each of these measures, consider which stakeholders could be involved in planning and implementing them (for example, DPOs, disabilityfocused NGOs, community organisations, traditional institutions, government departments, donor agencies, employers, academic institutions or the media) and the roles that each might play.

United Nations Partnership on the Rights of Persons with Disabilities (UNPRPD) (2011) The UNPRPD is a collaborative initiative which brought together several UN agencies, governments, DPOs and other civil society organisations to support the implementation of the CRPD (and later the achievement of disability-related targets within the 2030 Agenda) through the establishment of a multi-donor trust fund. The fund supports country-level programmes designed to enhance national capacities, strengthen data collection and promote stronger partnerships between governments and the disability sector, as well as broader regional and global initiatives designed to enhance the impact of country-level programmes. Between 2012 and 2019, the UNPRPD had funded 49 joint projects at country, regional and global levels, designed to promote more inclusive laws, policies and services across more than 40 countries (UNPRPD, 2019). In Tajikistan, for example, the fund supported a nationwide disability awareness campaign including media broadcasts and the dissemination of newly published books to schoolchildren promoting disability inclusion. However, a recent global survey conducted by the International Disability Alliance (IDA, 2020) on DPO participation in development programmes and policies, which received responses from 573 DPO representatives across 165 countries, raised questions around the inclusivity of UNPRPD initiatives. Many of the DPO respondents were either not familiar with the UNPRPD at all or had not received accessible information around how to participate in UNPRPD-funded projects.

Addis Ababa Financing Agenda (2015) This important agreement, which emerged from an international conference in Addis Ababa involving representatives of 193 UN Member States, laid some important foundations for the forthcoming 2030 Agenda in relation

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to development fnancing. The agreement covered a wide range of measures designed to improve global fnancial practices and stimulate the necessary fnancial investment for efective implementation of the SDGs. There was also a renewed commitment to overseas development aid, particularly for the poorest countries of the world, and a pledge to increase South–South cooperation (UNDESA, 2015). Signifcantly, the Financing Agenda contains several explicit references to disability, including commitments to disabilitysensitive education facilities, promoting the participation of disabled people in formal labour markets, accessible technology and the increased use of data disaggregated by disability (UN, 2015b).

2030 Agenda for Sustainable Development Given the widely acknowledged failure of the Millennium Declaration to take account of disability, preparations for the 2030 Agenda were punctuated by calls from international and national development agencies, as well as the disability sector, for the new framework to explicitly incorporate disability concerns. This was refected in an ofcial report by the thenUN Secretary-General Ban-Ki Moon (UN, 2013), titled The way forward: a disability-inclusive development agenda towards 2015 and beyond. The report highlighted some encouraging progress in terms of mainstreaming disability as a cross-cutting development issue while concluding that progress overall had been patchy, both within and between countries, and that the development of international frameworks for action, particularly the CRPD, had not yet been matched by action on the ground. It goes on to outline a series of proposals designed to promote a more disability-inclusive mainstream development agenda, such as including disabled people in the implementation of the SDGs, improving the accessibility of the built environment and building closer partnerships between development agencies and DPOs. The 2030 Agenda (UN, 2015c), built around the 17 SDGs, was unveiled in September  2015. One of the guiding principles of the new framework was ‘to leave no one behind’, a clear sign that the inclusion of vulnerable population groups, including disabled people, would be prioritised. Each of the 17 SDGs was accompanied by a set of targets, 169 in total, with seven of these targets making explicit reference to disability.6 As can be seen from Table 4.3, these targets are linked to fve of the SDGs. It is important to emphasise that this should not imply that the other 12 SDGs are not equally relevant to disabled people. Disability is a cross-cutting issue in the 2030 Agenda and all the goals are universal, which means that development research, policy and practice related to each of the goals should take account of the needs and priorities of disabled people. Following adoption of the 2030 Agenda, work continued on the crucial task of developing a global indicator framework for the SDGs and their corresponding targets. The Inter-agency and Expert Group on SDG Indicators (IAEG-SDGs), which was the focal point for the new indicator framework, proposed nine indicators relating to disability, linked to six of the SDGs

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Table 4.3 Disability in the SDGs Goal 4

Goal 8

Goal 10

Goal 11

Goal 17

Ensure inclusive and equitable quality education and promote lifelong learning opportunities for all Target 4.5 By 2030, eliminate gender disparities in education and ensure equal access to all levels of education and vocational training for the vulnerable, including persons with disabilities, indigenous peoples and children in vulnerable situations Target 4.8 Build and upgrade education facilities that are child-, disability- and gender-sensitive and provide safe, nonviolent, inclusive and efective learning environments for all Promote sustained, inclusive and sustainable economic growth, full and productive employment and decent work for all Target 8.5 By 2030, achieve full and productive employment and decent work for all women and men, including for young people and persons with disabilities and equal pay for work of equal value Reduce inequality within and among countries Target 10.2 By 2030, empower and promote the social, economic and political inclusion of all irrespective of age, sex, disability, race, ethnicity, origin, religion or economic or other status Make cities and human settlements inclusive, safe, resilient and sustainable Target 11.2 By 2030, provide access to safe, afordable, accessible and sustainable transport systems for all, improving road safety, notably by expanding public transport, with special attention to the needs of those in vulnerable situations, women, children, persons with disabilities and older persons Target 11.7 By 2030, provide universal access to safe, inclusive and accessible, green and public spaces, in particular for women and children, older persons and persons with disabilities Strengthen the means of implementation and revitalise the global partnership for sustainable development Target 17.18 By 2020, enhance capacity-building support to developing countries, including for LDCs and SIDS, to increase signifcantly the availability of high-quality, timely and reliable data disaggregated by income, gender, age, race, ethnicity, migratory status, disability, geographic location and other characteristics relevant in national contexts

(UNESCO, 2015). The report also called for data disaggregation by disability, where relevant, as well as highlighting the need to improve both international and national data collection mechanisms and to expand international guidelines on collecting reliable and comparable data. The new global indicator framework, which incorporated these recommendations and actually

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included 11 indicators explicitly referring to disability, was agreed and adopted by the United Nations Statistical Commission in March  2016. In relation to Goal 1 on poverty reduction, for example, Indicator 1.3.1 requires data to be collected on the proportion of people covered by social protection schemes, disaggregated by various population groups, including disabled people. By incorporating disability-related targets and indicators into its framework, the 2030 Agenda appeared to have answered the calls for disability to be mainstreamed into development planning. The challenge that lay ahead for governments and development agencies, as well as disabled people themselves and the organisations that represent them, was to ensure that this opportunity to foster a more inclusive society with greater recognition of disability rights was not lost. The frst major global review of progress towards achieving this vision, based on internationally comparable data collected via the Washington Group Short Set of Questions,7 statistical databases maintained by international agencies and a review of legislation in 193 UN Member States, culminated in the publication of a UN fagship report on disability and development (UNDESA, 2018). In the foreword to this report, UN SecretaryGeneral Antonio Guterres reiterated the earlier sentiments expressed by his predecessor, Ban-Ki Moon, by highlighting the importance of disability to the realisation of the 2030 Agenda:

Disability and the 2030 Agenda The 2030 Agenda for Sustainable Development is the world’s globally agreed plan for peace and prosperity for all on a healthy planet. But this vision of a better future can only be achieved with the full participation of everyone, including persons with disabilities. Upholding the rights and ensuring the fully inclusion of the world’s 1 billion persons with disabilities is not only a moral imperative, but a practical necessity. (UNDESA, 2018, p. i)

The report identifes some encouraging signs of progress in terms of addressing disability-related concerns. In relation to education (SDG 4), for example, 41 per cent of countries were providing appropriate materials and communication to support disability inclusion in 2017, as compared with 17 per cent of countries in 2013. In relation to inclusive cities (SDG 11), it was observed that ‘more and more countries have taken measures to improve physical accessibility in public transportation, public playgrounds, cultural facilities, and sidewalks and pedestrian crossings’ (p.  14). The overriding

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message, however, was that disabled people around the world continue to face deep inequalities and numerous barriers to full inclusion. They are disproportionately represented among the poor; they are often denied access to education, employment and essential services; they continue to experience disability-related stigma and discrimination; and they are frequently excluded from decision-making and political participation. The report concludes that international and national development programmes will need to prioritise inclusive development and include concrete actions to address disability issues if the SDGs are to be achieved by 2030. Such actions should directly address the barriers to inclusion, such as discriminatory laws and policies, inaccessible environments, negative attitudes and stigma. Also, it calls for greater investment in the monitoring and evaluation of SDG progress, in relation to disability, and measures to strengthen the implementation of disability laws, policies and services.

Regional agreements Various regional agreements have reinforced the international legal framework in relation to disability, while also drawing attention to the importance of local issues and contextual diferences. Some of the most signifcant ones are reviewed in this section. Regional decades Following the original United Nations Decade of the Disabled (1983–1992), which achieved some success in terms of raising awareness on disability and strengthening the international disability movement, most regions of the world have implemented similar initiatives. In 1992, for example, the United Nations Economic and Social Commission of Asia and the Pacifc (ESCAP) announced the frst Asia and Pacifc Decade (1993–2002), reinforced by the adoption of the Proclamation on the Full Participation and Equality of People with Disabilities. This was followed by a second decade (2003–2012) and then a third (2013–2022). The onset of this latest Asia and Pacifc Decade was marked by the adoption of the Incheon Strategy, titled To Make Right Real, which comprised the frst set of regionally agreed disability-inclusive development goals, designed to build on the CRPD and to ‘promote a barrier-free and rights-based society for persons with disabilities in Asia and the Pacifc’ (ESCAP, 2012, Abstract). Similarly, the frst African Decade of Disabled Persons, designed to raise awareness on disability within the region and promote solutions tailored to the African context, was launched by the African Union in 1999 and subsequently extended to 2019. The trend of renewing regional decades can also be seen in Latin America, where the frst decade (2006–2016) was extended to 2026, with the current decade focused on implementing the Programme of Action for the Decade of the Americas for the Rights and Dignity of Persons with

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Disabilities (2016–2026). This agreement, adopted by the Organisation of American States (OAS), sets out a vision for an inclusive society by the year 2026, supported by a set of concrete actions in areas such as health, education, employment, accessibility, social participation and independent living (OAS, 2016). The proliferation of regional decades around the world refects a growing sense that global approaches to solving the problems associated with disability do not always refect the priorities of disabled people in diferent parts of the world. Thus, the regional decades support more localised approaches to addressing these priorities. Inter-American Convention for the Elimination of All Forms of Discrimination Against Persons With Disabilities (1999) This Convention, which entered into force in 2001, has now been ratifed by 19 OAS Member States.8 The Convention advocates a range of measures designed to promote independence, quality of life and inclusion, calling on governments within the region to adopt ‘legislative, social, educational, labour-related, or any other measures needed to eliminate discrimination against persons with disabilities and to promote their full integration into society’ (OAS, 1999, Article III). Protocol to the African Charter on Human and People’s Rights on the Rights of Persons with Disabilities in Africa (2018) This Protocol (African Union, 2018) provides a legal and institutional framework to guide the formulation of national disability laws and policies across the African continent. While broadly consistent with the CRPD, the Protocol also addresses issues thought to be unique to Africa, particularly in relation to conditions of extreme poverty in which many disabled people live and the damaging impact of certain beliefs and practices. For example, attention is drawn to the ‘maiming and killing of persons with albinism in many parts of the continent’ (Preamble) while Article 11 calls on State Parties to ‘eliminate harmful practices perpetrated on persons with disabilities, including witchcraft, abandonment, concealment, ritual killings or the association of disability with omens’ (Paragraph 1). At the time of writing, 11 African states had signed up to the Protocol, with three (Mali, Kenya and Rwanda) having also ratifed (African Union, 2022). A further 12 ratifcations were needed for the Protocol to enter into force and hence become legally binding.

Summary of key points •

There is now a raft of international agreements in place that are designed to protect the rights of disabled people and promote their full inclusion in society. The language of these agreements has increasingly refected

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•

•

•

•

73

a perception of disability that takes into account the disabling role of society and the need to remove societal barriers, so that disabled people can enjoy the rights and freedoms to which they are entitled. The CRPD is the frst major human rights treaty of the twenty-frst century, taking its place within a family of human rights treaties protecting vulnerable social groups and providing a legal basis to support the implementation of previous international agreements on disability. The Convention is considered a landmark achievement for the international disability movement, which was fully involved in the drafting process and has an important role to play in its implementation. With the vast majority of UN Member States now having signed and ratifed the CRPD, disability rights are widely recognised in law throughout the world. However, there are many barriers to the efective implementation of the CRPD, including inadequate data, weak governance structures, lack of political will, limited DPO capacity and a prevailing charity outlook on disability in many countries. While the 2000 Millennium Framework was disappointingly silent on disability, the 2030 Agenda aims to ‘leave no one behind’ and contains several explicit references to disability, underlining the rising profle of disability as a mainstream development priority and presenting a new opportunity for disabled people to be recognised as citizens with rights to full participation in society. A number of important regional agreements have reinforced global treaties, such as the CRPD, while also refecting more localised concerns.

Discussion questions 1) The international agreements highlighted in this chapter refect the increasing adoption of a rights-based perspective on disability, despite a long history of charity or welfare approaches in many countries. To what extent have disability practices changed to refect the rightsbased perspective in your own country or a country with which you are familiar? 2) The CRPD promotes principles such as inclusion, participation, individuality and independence, which are sometimes viewed as Western values. To what extent do you view the adoption of these principles or values as appropriate in the global context? 3) How does the 2030 Agenda difer from the Millennium Framework in relation to disability, and what diference do you think that the SDGs will make to the lives of disabled people in the coming years?

Suggested further reading Meekosha, H. and Soldatic, K. (2011) ‘Human rights and the Global South: The case of disability’. In Third World Quarterly 32(8): 1383–1398.

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Mittler, P. (2016) ‘The UN Convention on the Rights of Persons with Disabilities’. In Iriarte, E., McConkey, R. and Gilligan, R. (Eds.) Disability and Human Rights: Global Perspectives. London: Palgrave, 33–48. Schulze, M. (2010) Understanding the UN Convention on the Rights of Persons with Disabilities and Optional Protocol (3rd Edition). London: Handicap International. Retrieved on 12 October 2021 from www.internationaldisabilityalliance.org/sites/default/fles/documents/hi_crpd_manual2010.pdf

Notes 1 The role of DPI as a focal point for the international disability movement is discussed in Chapter 5. 2 Most of the rights referred to in the CRPD were covered by previous international treaties, although it could be argued that the CRPD has actually expanded the disability rights framework to include, for example, rights to social protection and inclusion in mainstream development programmes (Kayess and French, 2008). 3 See Chapter 2 for an explanation of the Social Model. 4 See Suggested further reading. 5 DPO constraints are further explored in Chapter 5. 6 Several other targets make reference to vulnerable persons or persons in vulnerable situations. 7 See Chapter 2 for an explanation of the WG-SS. 8 The United States is a notable exception.

References African Union (2018) Protocol to the African Charter on Human and People’s Rights on the Rights of Persons with Disabilities in Africa. Retrieved on 22 October  2021 from 36440-treaty-protocol_to_the_achpr_on_the_rights_of_persons_ with_disabilities_in_africa_e.pdf African Union (2022) Status List. Retrieved on 17 June  2022 from 36440-slPROTOCOL_TO_THE_AFRICAN_CHARTER_ON_HUMAN_AND_ PEOPLESaEUtm_RIGHTS_ON_THE_RI._.pdf (au.int) Axworthy, L. (1998) ‘A Ban of the People: The Landmines Campaign and the New Diplomacy’. Cambridge University Conference on Global Governance, 9 May. Cobley, D.S. (2012) ‘Towards economic empowerment: Segregation versus inclusion in the Kenyan context’. In Disability and Society 27(3): 371–384. Coleridge, P. (2007) ‘Economic empowerment’. In Barron, T. and Amerena, P. (Eds.) Disability and Inclusive Development. London: Leonard Cheshire International, 111–154. Disabled People’s International (2002) Sapporo Declaration. Retrieved on 26 October 2021 from http://dpi.org/document/world-assemblies-declaratio/cairo-declaration/ index.html Dos Santos-Zingale, M. and McColl, M.A. (2006) ‘Disability and participation in post-confict situations: The case of Sierra Leone’. In Disability and Society 21(3): 243–257. Economic and Social Commission for Asia and the Pacifc (ESCAP) (2012) Incheon Strategy “To Make the Right Real” for Persons with Disabilities in Asia and

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the Pacifc. Retrieved on 6 September  2021 from www.unescap.org/resources/ incheon-strategy-make-right-real-persons-disabilities-asia-and-pacifc-and-beijing Grischow, J. (2015) ‘’I nearly lost my work’: Chance encounters, legal empowerment and the struggle for disability rights in Ghana’. In Disability and Society 30(1): 101–113. International Campaign to Ban Landmines (ICBL) (undated) Treaty Status. Retrieved on 6 September 2021 from www.icbl.org/en-gb/the-treaty/treaty-status.aspx International Disability Alliance (IDA) (2020) Increasingly Consulted But Not Yet Participating. IDA global survey on participation of organisations of persons with disabilities in development programmes and policies. Retrieved on 31 October  2021 from www.internationaldisabilityalliance.org/sites/default/fles/ ida_global_survey_complete_report_fnal.pdf Kayess, R. and French, P. (2008) ‘Out of darkness into light? Introducing the Convention on the Rights of Persons with Disabilities’. In Human Rights Law Review 8(1): 1–34. Lang, R., Kett, M., Groce, N. and Trani, J.F. (2011) ‘Implementing the United Nations Convention on the Rights of Persons with Disabilities: Principles, implications, practice and limitations’. In European Journal of Disability Research 5(3): 206–220. Lindqvist, B. (1998) Statement by Mr. Bengt Lindqvist, Special Rapporteur of the UN Commission for Social Development. UN Commission on Human Rights. 54th Session, Agenda Item 15. Washington: United Nations. Lindqvist, B. (1999) World Disability Report. Geneva: International Disability Foundation. Lord, J., Posarac, A., Nicoli, M., Pefey, K., McClain-Nhlapo, C. and Keogh, M. (2010) Disability and International Cooperation and Development: A Review of Policies and Practices. Retrieved on 12 October  2021 from www.researchgate. net/publication/241768758_Disability_and_international_cooperation_and_ development_a_review_of_policies_and_practices Meekosha, H. and Soldatic, K. (2011) ‘Human rights and the Global South: The case of disability’. In Third World Quarterly 32(8): 1383–1398. Mittler, P. (2016) ‘The UN Convention on the Rights of Persons with Disabilities’. In Iriarte, E., McConkey, R. and Gilligan, R. (Eds.) Disability and Human Rights: Global Perspectives. London: Palgrave, 33–48. Mont, D. (2007) Measuring Disability Prevalence. Washington: World Bank. Retrieved on 11 November 2021 from https://documents1.worldbank.org/curated/en/ 578731468323969519/pdf/395080Disability0SP070601PUBLIC1.pdf Munsaka, E. and Charnley, H. (2013) ‘We do not have chiefs who are disabled: Disability, development and culture in a continuing complex emergency’. In Disability and Society 28(6): 756–769. O’Reilly, A. (2007) The Right to Decent Work of Persons with Disabilities. Geneva: ILO. Organisation of American States (OAS) (1999) Inter-American Convention for the Elimination of All Forms of Discrimination against Persons with Disabilities. AG/ RES 1608 (XXIX 0/99). Retrieved on 15 October 2021 from www.oas.org/juridico/ english/treaties/a-65.html Organisation of American States (OAS) (2016) Programme of Action for the Decade of the Americas for the Rights and Dignity of Persons with Disabilities (2016– 2026). Retrieved on 11 December  2022 from PROGRAM_OF_ACTION _.  .  . _PERSONS_WITH_DISABILITIES_2016-2026.pdf (oas.org)

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Philippines Coalition (2013) UN Convention on the Rights of Persons with Disabilities: A Parallel Report Submitted to the Committee on the Rights of Persons with Disabilities on the Implementation of the Convention in the Republic of the Philippines from 2008–2013. Retrieved on 2 November 2021 from www.slideshare. net/akkapppasig/2013-uncrpd-parallel-report-of-the-philippine-coalition Rohwerder, B. (2018) Disability Stigma in Developing Countries. K4D Helpdesk Report. Brighton: Institute of Development Studies. Schulze, M. (2010) Understanding the UN Convention on the Rights of Persons with Disabilities and Optional Protocol (3rd Edition). London: Handicap International. Retrieved on 12 October 2021 from www.internationaldisabilityalliance. org/sites/default/fles/documents/hi_crpd_manual2010.pdf Short, N. (1999) ‘The role of NGOs in the Ottawa process to ban landmines’. In International Negotiation 4: 481–500. Thakur, R. and Malley, W. (1999) ‘The Ottawa convention on landmines: A landmark humanitarian treaty in arms control?’ In Global Governance 5: 273–302. UN (United Nations) (1948) Universal Declaration of Human Rights. Retrieved on 28 October 2021 from www.un.org/en/about-us/universal-declaration-of-humanrights UN (United Nations) (1966) International Covenant on Civil and Political Rights. Retrieved on 28 October  2021 from www.ohchr.org/en/professionalinterest/ pages/ccpr.aspx UN (United Nations) (1971) Declaration on the Rights of Mentally Retarded Persons, G.A. Res 2856 (XXVI). Retrieved on 28 October 2021 from www.ohchr. org/EN/ProfessionalInterest/Pages/RightsOfMentallyRetardedPersons.aspx UN (United Nations) (1975) Declaration on the Rights of Disabled Persons, G.A. Res 3447 (XXX). Retrieved on 31 October 2021 from www.ohchr.org/en/professionalinterest/ pages/rightsofdisabledpersons.aspx UN (United Nations) (1983) World Programme of Action Concerning Disabled Persons. Retrieved on 3 November 2021 from www.un.org/development/desa/disabilities/ resources/world-programme-of-action-concerning-disabled-persons.html UN (United Nations) (1993) Standard Rules on Equalization of Opportunities for Persons with Disabilities. Retrieved on 3 November  2021 from www.un.org/ development/desa/disabilities/standard-rules-on-the-equalization-of-opportunitiesfor-persons-with-disabilities.html UN (United Nations) (1995) Copenhagen Declaration on Social Development and Programme of Action. Retrieved on 7 November 2021 from www.un-documents. net/cope-dec.htm UN (United Nations) (2000a) Resolution 2000/51. UN Commission on Human Rights DocE/CN.4?Res/2000/51. Retrieved on 14 November  2021 from www. refworld.org/docid/3b00f2bb28.html UN (United Nations) (2000b) Millennium Declaration. Retrieved on 14 November 2021 from www.ohchr.org/EN/ProfessionalInterest/Pages/Millennium.aspx UN (United Nations) (2006) Convention on the Rights of Persons with Disabilities and Optional Protocol. Washington: United Nations. UN (United Nations) (2009) Realizing the MDGs for Persons with Disabilities through the Implementation of the WPA and the UNCRPD. Report of the SecretaryGeneral A/RES/63/150. Retrieved on 20 October 2021 from www.un.org/development/ desa/disabilities/resources/realizing-the-millennium-development-goals-forpersons-with-disabilities-through-the-implementation-of-the-world-programme-

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of-action-concerning-disabled-persons-and-the-convention-on-the-rights-of-per. html UN (United Nations) (2013) The Way Forward: A  Disability-inclusive Development Agenda Towards 2015 and Beyond. Report of the Secretary-General A/68/95. Retrieved on 20 October  2021 from https://digitallibrary.un.org/ record/750428?ln=en UN (United Nations) (2015a) Report of the Committee on the Rights of Persons with Disabilities Seventieth Session. Supplement No. 55 (A/70/55). Retrieved on 17 March  2017 from https://documents-dds-ny.un.org/doc/UNDOC/GEN/ G15/095/26/PDF/G1509526.pdf?OpenElement UN (United Nations) (2015b) Addis Ababa Action Agenda of the Third International Conference on Financing for Development. Outcome Document adopted at Third International Conference on Financing for Development (Addis Ababa, Ethiopia, 13–16 July) and endorsed by General Assembly in Resolution 69/313 on 27 July. Retrieved on 3 November 2021 from https://unctad.org/system/fles/ ofcial-document/ares69d313_en.pdf UN (United Nations) (2015c) Transforming Our World: The 2030 Agenda for Sustainable Development. Washington: United Nations. UNDESA (United Nations Department of Economic and Social Afairs) (2015) Countries Reach Historic Agreement to Generate Financing for New Sustainable Development Agenda. United Nations Department of Economic and Social Afairs Press Release. Retrieved on 3 November 2021 from www.un.org/africarenewal/ news/countries-reach-historic-agreement-generate-financing-new-sustainabledevelopment-agenda UNDESA (United Nations Department of Economic and Social Afairs) (2018) Disability and Development Report: Realising the SDGs, by and for Persons with Disabilities. New York: United Nations. UNESCO (United Nations Economic and Social Council) (2015) Report of the Interagency and Expert Group on SDG Indicators. Retrieved on 13 December 2022 from E_CN.3_2016_2-EN.pdf UNPRPD (United Nations Partnership on the Rights of Persons with Disabilities) (2019) The United Nations Partnership on the Rights of Persons with Disabilities Multi-Partnership Trust Fund 2019 Annual Report. Retrieved on 25 October  2021 from The United Nations Partnership on the Rights on Persons with Disabilities – Multi Partner Trust fund (unprpd.org) World Bank (2004) The World Bank and the Copenhagen Declaration Ten Years After. Social Development Department. Retrieved on 3 April  2017 from http:// siteresources.worldbank.org/EXTSOCIALDEVELOPMENT/Resources/World+ Bank+and+Copenhagen+Commitments+Final092004.pdf

5

Disabled People’s Organisations and the international disability rights movement

It is largely due to the actions of disabled people themselves, in articulating their own experiences and challenging society to be more accommodating, that disability rights are now widely recognised in international law. The CRPD in particular, with its emphasis on the removal of disabling barriers and promotion of full participation, represents a major shift in thinking from an individual model perspective, in which disabled people are required to adapt to the norms of a society that is not designed to include them, to an approach which values and respects disabled people as citizens with equal rights. This rights-based approach to disability can bring benefts to the whole of society, as refected in the following statement from the CRPD:

Rights-based perspective in the CRPD [T]he promotion of the full enjoyment by persons with disabilities of their human rights and fundamental freedoms and of full participation by persons with disabilities will result in their enhanced sense of belonging and in signifcant advances in the human, social and economic development of society and the eradication of poverty. (UN, 2006, Preamble (m))

This chapter begins by looking at the Independent Living Movement (ILM) in the United States, an early example of disabled people coming together to express their concerns and campaign for greater freedoms within mainstream society, before exploring the growth of the wider international disability rights movement that exists today. There is a particular focus on the critical role of disabled peoples’ organisations (DPOs) within the movement and some of the challenges that they currently face. This is followed by a discussion around the extent to which a rights-based approach to disability DOI: 10.4324/9781003256038-5

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policy and practice is truly refective of the needs and priorities of disabled people around the world, especially those living in poverty. The chapter concludes with an explanation of the disability mainstreaming approach, a strategy designed to operationalise the rights-based approach by ensuring that general development planning and programming takes full account of disability, and the closely associated twin-track approach, which is often seen as a solution to the perceived limitations of mainstreaming.

The independent living movement Triggered by the actions of a small group of disabled students at the University of California, the ILM arose in the late 1960s against the backdrop of the American civil rights movement. Despite being housed in a local hospital wing due to the severity of their physical impairments, these students were determined to live their student lives to the full (Hurst, 2000). Led by the charismatic Ed Roberts, sometimes referred to as the ‘father of disability rights’ (Carson, 2013), they set up an organisation on the Berkeley campus to campaign for accessibility improvements and the provision of disability support services, such as personal assistants. On completing their degrees, they continued to work together to uphold the rights of disabled people to self-determination and independence, leading to the founding of the frst Centre for Independent Living (CIL) in Berkeley in 1972, with Ed Roberts serving as executive director. In line with its main objective of supporting disabled people to live full and independent lives within mainstream society, the CIL provided core services in fve main areas, as shown in Box 5.1. The ILM spread rapidly and within ten years there were over 200 CILs across the United States, all run by disabled people and inclusive of people with all types of impairment. Some of them added additional services to the original core services, such as information, advocacy, employment and education support, to combat social exclusion and poverty among disabled people. There are now CILs in many countries around the world, supporting disabled people to live full and independent lives within mainstream society. Case Study 5.1 describes the work of one such organisation called

Box 5.1 • • • • •

Core CIL services

Housing Personal Assistance Transport Access Peer Counselling and Support

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Case Study 5.1: Life Haven Based on the philosophy behind the American independent living movement, Life Haven campaigns for personal assistant services to enable disabled people to live more independently, as well as raising awareness more generally on disability issues within the Philippines. Life Haven recently joined Social Watch Philippines – a federation of civil society organisations which campaigns to improve policies and service delivery – and has close links with the government. By linking up with Social Watch, members of Life Haven have been able to participate in consultation clusters that advise the government on budget priorities in areas such as education, health, employment, the environment and social protection. Life Haven’s President, Abner Manlapaz, recalled that before joining Social Watch the organisation was occasionally invited to join workshops arranged by NGOs or government agencies. Now they were able to engage directly with government committees on a regular basis, even infuencing decision-making at Congress, the highest level of government. The partnership had also fostered greater awareness around disability within Social Watch itself, he observed, with disability issues sometimes being raised at cluster meetings even when Life Haven representatives were not present. The opportunity for Life Haven to infuence government policymaking and planning at the highest levels came about through its willingness to form an alliance with poverty-focused organisations within civil society. This approach shows an awareness of the commonalities between disability and poverty and refects Yeo’s (2005) call for the disability movement to forge horizontal alliances with more general campaigns to reduce poverty. Source: Adapted from Cobley, 2015.

Life Haven, based in Manila, which provides core services in line with the original CIL model and has also achieved notable success in its advocacy work.

Disabled People’s International and the International Disability Movement The International Disability Movement (IDM) really took of with the birth of Disabled People’s International (DPI) in 1981, which was

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designated by the United Nations as the International Year of Disabled People. The creation of DPI was triggered by events that took place in 1980 at a conference in Canada organised by Rehabilitation International, an organisation run mainly by non-disabled rehabilitation professionals, to which a number of prominent disabled people from around the world had been invited. During the conference, a charter was proposed that included the aim ‘to take all necessary steps to ensure the fullest possible integration of and participation by disabled people in all aspects of the life of their communities’ (Rehabilitation International, 1980, p. 647). Some of the disabled delegates who were present proposed that Rehabilitation International should put these words into action by actually becoming a DPO itself, allowing disabled people to take control of the organisation (Oliver, 1990). This proposal was rejected, leading to many of the disabled delegates staging a walkout and holding their own side-conference in the same hotel, at which they formed the vision of an international movement that would give disabled people a voice and enable them to access their rights to equal participation. Some of those present agreed to set up national umbrella organisations of DPOs in their own countries, which led to the formation of bodies such as the British Council of Organisations for Disabled People and the National Council of Disabled People of Zimbabwe. In 1981, the group met again in Singapore, where DPI was founded with the aim of promoting disability rights and the equalisation of opportunities for disabled people worldwide. Driedger (1989) describes the early history of DPI, arguing that its establishment marked the beginning of a coordinated struggle for the recognition of human rights for disabled people around the world. Made up of an executive council, based in Canada, and 122 national assemblies (DPI, 2018), DPI is still fourishing as the world’s only crossdisability global DPO. The organisation’s adopted slogan, ‘nothing about us without us’, is based on the title of James Charlton’s (1998) remarkable study of disability oppression and empowerment, which draws on interviews conducted with disability activists around the world over a ten-year period. This slogan has become a rallying call for the movement, implying that disabled people and the organisations that represent them should be involved in all decisions that afect their lives. They need to be at the forefront of their own development and empowerment, if real social change is to take place. DPI itself has been very focused on ensuring that the voices of disabled people are heard on the international stage when important decisions are made. It has worked closely with the United Nations, in particular, and has had a signifcant impact on the drafting of several major international agreements, including the World Programme of Action and the Copenhagen Declaration.1 In 1999, DPI became a key player within the International Disability Alliance (IDA), a global coalition of regional

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and international member organisations that was established to provide leadership from the disability sector during the negotiations that led up to the adoption of the CRPD. This monumental advocacy and lobbying campaign is now widely regarded as the ‘most important accomplishment of the disability rights movement’ (Malinga and Gumbo, 2016, p. 64).2

Disabled people’s organisations (DPOs) There is a long history of organisations for disabled people, set up to promote the welfare of disabled people and provide services to them. In the UK, for example, the Royal National Institute for the Blind was established in 1868, while in France, the Institut Nacional des Jeunes Aveugles (National Institution for the Young Blind) was established by Valentine Hauy in 1784 and later attended by Louis Braille, the inventor of the braille reading and writing system. On the international stage, Rehabilitation International was founded in 1922 while the World Federation for the Deaf was established in 1951. Both are now global organisations with member organisations in over 100 countries around the world. DPOs are a far more recent phenomenon. They difer from the disability organisations described earlier in that they are predominantly run by disabled people themselves.3 Oliver (1990) attributes the rise of DPOs in the UK to disillusionment among disabled people at the charity model outlook of many traditional organisations for disabled people, their failure to assume that disabled people were capable of taking control of their own lives and the perceived tendency of key individuals within these organisations to serve their own interests. Among the early DPOs in the UK was the Union of the Physically Impaired Against Segregation (UPIAS), formed in the 1970s. UPIAS created a platform for disabled people themselves to voice their concerns and opinions, rather than having them represented by others, and used this platform to articulate the ideas that formed the basis of Oliver’s (1983) social model.4 As in the UK, disability activists and advocates around the world have increasingly campaigned for the rights of disabled people to represent themselves and participate in their own development rather than being represented by other organisations, such as charities and non-governmental organisations (NGOs). This has led to the spread of DPOs across the globe, from small local self-help groups to regional and national networks of DPOs that have formed to facilitate cohesion among local groups and to coordinate advocacy campaigns. In Uganda, for example, the National Union of Disabled Persons of Uganda (NUDIPU), an umbrella body of Ugandan DPOs, has been credited with winning unique constitutional rights for disabled people, who are now represented at every level of government, and having a positive infuence on national legislation (Dube et al., 2005).

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Box 5.2 • • • • • • •

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Typical DPO roles

Building solidarity and companionship among disabled people (reducing isolation) Providing members with opportunities to articulate their own needs and experiences of disability Sharing information among members Providing services (such as revolving savings schemes, vocational training programmes and business development support) Advocating on behalf of individual members Campaigning for improved access to society and increased recognition of disability rights Challenging societal attitudes and negative beliefs/stigmas around disability

DPOs carry out a wide range of functions, as summarised in Box 5.2. In addition to these typical roles, many run their own income-generating projects, providing members with an opportunity to participate in a collective enterprise. For example, the Githunguri Disabled Self-help Group, located in Kenya’s Central Province, runs a small rural production workshop where curios are produced from banana fbres and tree seedlings, which are in abundance locally and usually donated to the project by locals, with products being sold via agents at trade fairs across Kenya. Members who are unable to reach the workshop are able to work at home, since products are made by hand. The group has also worked hard to integrate with the local community through various initiatives, such as regular drama productions showing how natural resources can be put to productive use. Maxwell Mbygua, the Group Chairman, claimed that these initiatives have altered community perceptions from ‘seeing the group as a “charity case” to a self-reliant organisation’ (Cobley, 2012, p. 379).

Challenges facing DPOs As shown in Box 5.3, the CRPD recognises the vital role of DPOs as representative organisations for disabled people, efectively institutionalising them as the primary interpreters and monitors of the Convention within nation states (Stein and Lord, 2012). Given the variety of roles that DPOs fulfl and the resource constraints that they often face, this raises questions as to whether DPOs have the capacity, or even the willingness, to take on this role of efectively policing the implementation of the CRPD. This subsection explores some of the current challenges facing DPOs.

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Box 5.3

Recognition of DPOs in the CRPD

Article 4 (Paragraph 3), General Obligations: In the development and implementation of legislation and policies to implement the present Convention. . . . State Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organisations. Article 29 (Paragraph 3), on ‘Participation in political and public life’: Promote actively an environment in which persons with disabilities can efectively and fully participate in the conduct of public afairs . . . including . . . (ii) Forming and joining organisations of persons with disabilities to represent persons with disabilities at international, national, regional and local levels. Article 33 (Paragraph 3), on ‘National Implementation and Monitoring’: Civil society, in particular persons with disabilities and their representative organisations, shall be involved and participate fully in the monitoring process.

Resource constraints A global survey conducted by the IDA (2020), which garnered responses from 573 DPO representatives in 165 countries across all regions, found that many DPOs lack the technical and organisational capacity to engage efectively with relevant stakeholders, including funding agencies. This means that DPOs often rely heavily on member contributions, with donor funding that they do receive usually earmarked for running specifc projects or services rather than for covering core running costs. The issue of resource restraints was highlighted by a systematic literature review of peer-reviewed studies on DPOs (Young et al., 2016), with most of the 11 studies that were included in the review referring to the negative impact of fnancial and human resource limitations on functional capacity. Similar fndings emerged from a more recent study on DPOs in Burkino Faso: Despite the huge number of grassroots disabled people’s organisations (DPOs), many of these organisations do not function beyond the occasional meeting and celebration of the International Day of Persons with Disabilities. The reasons for this are various, including dependency on

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external funding (such as from international organisations), lack of access to resources, being dependent on voluntary members, and lack of organisation. (Bezzina, 2019, p. 1)5 It should not be assumed, however, that local DPOs are always resourcepoor and dependent on the international community. As Thomas (2005) has pointed out, while DPOs often value the support of Northern NGOs, particularly in terms of engaging with donor agencies on their behalf, ‘the perception that DPOs lack capacity is not always well-founded and is in danger of becoming a self-fulflling prophecy’ (p.  14). Bezzina’s study touches on this issue, noting that many DPOs in Burkino Faso have formed with the sole aim of attracting aid and support from external partners rather than setting their own objectives and seeking to generate funds internally. In many cases, this has led to an unhealthy level of dependency on funding partners, especially international NGOs (INGOs), with many DPOs in the country ceasing to function altogether when funding has been terminated. One potential solution proposed by Bezzina is that INGOs and other donors consider funding local DPOs directly, rather than tying funding to specifc donor-driven projects, to support DPOs in pursuing their own objectives. Conficting priorities Tensions often exist between the global human rights discourse, as refected in the CRPD, and the priorities of local DPOs. Since the advent of the CRPD there has been a marked increase in the implementation of capacity-building programmes, often instigated by donor agencies and global DPO networks such as DPI and the IDA, designed to enable DPOs to fulfl their CRPDmonitoring role efectively (Meyers, 2016). Unfortunately, as Meyers goes on to point out, these activities often pressurise local DPOs to realign their objectives and divert resources away from existing activities which, although they may be highly valued by members, do not appear to refect the rightsbased agenda. In the process, there is a danger that this shift in priorities may mean that local DPOs themselves become less relevant to their members and quickly lose support. This chimes with the fndings of the IDA (2020) survey, which revealed that while many DPOs had received greater levels of funding over the past year, the increased reliance on donor funding had tended to undermine their independence and autonomy, as well as their ability to build their own capacities. This problem was illustrated by a study conducted by Meyers (2014) in Nicaragua, where he spent 18 months observing the activities of seven local disability associations belonging to a citywide disability rights coalition.6 One of the coalition leaders expressed frustration at the pressure placed on them by international donors to engage in advocacy work, in confict with organisational priorities that they had identifed themselves:

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Global versus local priorities Sometimes we fnd that we are fnanced for certain objectives in a particular way that is a bad use of money, you understand? That is to say they want to pour more into promoting awareness, but we want to strengthen the associations internally. Because, look, how are you going to believe in those associations if they have no real capacity. (Interview, 17 August 2012) Source: Meyers, 2014, p. 467.

Ironically, the association with the strongest advocacy focus had experienced a dramatic decline in active membership to the point where decisions often could not be made at meetings because association rules required a 50 per cent quorum. Meyers attributes this decline to the tendency of group leaders to pay insufcient attention to issues raised by members that did not align with the externally driven rights-based agenda. Meyers concludes that donor organisations, including the global DPO networks that head up the international disability movement, need to build creative partnerships with local DPOs that build on existing capacities, value local knowledge and allow space for the expression of views and priorities that might difer from the global right-based perspective that broadly underpins the IDM. A study conducted in Cambodia (Nuth, 2018) reached very similar conclusions. This study focused on the Cambodian Disabled People’s Organisation (CDPO), a national umbrella organisation comprising 56 DPOs across Cambodia, which depends heavily on funding from external donor agencies. The CDPO had utilised its resources to pursue donor priorities, with an emphasis on advocacy around political participation and access to voting rights. However, many of those interviewed, including CDPO staf, were far more concerned with ensuring that disabled people could access the skills and capital necessary to develop their livelihoods, prioritising economic and social participation over political activism. Nuth points to a power diferential between the CDPO and its external funding partners, with local knowledge and priorities considered outdated in relation to the rights-driven agenda pursued by donor agencies. This had resulted in the CDPO becoming more accountable to its external funding partners than to the people that it claimed to represent. Representation DPOs typically face the challenge of representing the views and priorities of a diverse membership, including some who are more powerful

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than others. Yeo (2005) points out that the most articulate and vociferous members of DPOs, who often rise to become leaders, are rarely the most marginalised and often fail to represent the views of less powerful members. She argues, therefore, that leaders should be trained to listen to others and try to understand their situations, so that they can represent them more effectively. Bezzina’s (2019) study on Burkino Faso echoes this concern, observing that a lack of reading and writing skills among disabled adults, usually due to their prior exclusion from schooling, ‘often gives rise to a situation where the DPO leaders are those who possess a certain level of education, but are not necessarily the ones who have the DPOs’ and its members’ interests at heart’ (p.  7). An anthropological study on DPOs in Uganda also identifies problems around dominant leaders, observing that some even take advantage of their positions by using group resources for their own purposes (Whyte and Muyinda, 2007). Even if DPOs are able to effectively represent the interests of their own members, there is a danger that they may not represent the wider community of disabled people, especially those living in rural areas. A  study conducted in Nigeria, for example, revealed a complete lack of awareness of disability rights within a rural community of people with epilepsy, which the researchers viewed as ‘a classic example of how, from an historic perspective, DPOs have systematically failed to engage with disabled people living in rural areas’ (Lang and Upah, 2008, p. 21). Confict and fragmentation A further challenge, with the potential to undermine the ability of DPOs to efectively represent the best interests of disabled people, is the risk of confict and fragmentation. As noted earlier, DPOs often cater for members with a diverse range of impairments, abilities and educational backgrounds, so the task of ensuring that the opinions, needs and priorities of all members are taken into account is a difcult one. There may be conficting aims and objectives, particularly when resource limitations require difcult choices to be made between alternative courses of action. Confict between DPOs can also occur, often due to strategic or ideological diferences. In South Korea, for example, a split developed within the country’s rapidly growing Independent Living Movement, leading to the emergence of two distinct groups (one advocacy-oriented group and one service-oriented group) while tensions have also arisen between DPOs favouring radical or confrontational approaches to advocacy, such as public sit-ins, and those preferring to adopt more passive tactics, such as seminars and conferences (You and Hwang, 2018). In Turkey, similarly, disagreements between the numerous disability federations and associations have often prevented them from uniting to promote disability rights in an efective way (Bezmez and Yardimci, 2010).

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Political infuence Further, conficts of interest may arise when DPOs are closely aligned with political structures. Working within political structures can facilitate access to vital resources and increased levels of infuence on government policy and practice. However, there is a very real risk that this can lead to a loss of independence, as well as reducing the appeal of such organisations within their local communities. Working outside of political structures can also allow DPOs more space to adopt confrontational tactics, such as street protests, which may be more efective than collaborative strategies in terms of garnering public support and bringing about policy change (Pettinichio, 2017). It should be recognised that DPOs are political organisations themselves and will often work in ways that refect the political context in which they are located (Nuth, 2018). In China, for example, diminishing space for civil society and recent legislation that restricts access to overseas funding has led many DPOs to pursue government service provider contracts rather than engaging in disability rights advocacy (Huang, 2019). While this could be viewed as a threat to the advance of disability rights in China, Huang argues that the shift towards DPO service provision has enabled many disabled people to receive rights-based services that are more responsive to their immediate needs, especially around access to healthcare, livelihoods support and psychological counselling. Also, she observes that service-oriented DPOs in China have provided new opportunities for disabled people to engage in collective enterprises and self-help activities, thus fostering a stronger sense of collective identity and disability consciousness.

The rights-based approach in Southern contexts While the principles of participation, empowerment and inclusion have gained increasing acceptance within international development discourse, questions are sometimes raised as to how rights-based rhetoric relates, in practice, to the everyday lives of those living in poverty, many of whom may regard such rhetoric as irrelevant. Mikkelsen (2005), for example, observes that many development organisations claim to have adopted the rightsbased approach without actually having developed their methodologies and capacities to fully operationalise such an approach. Uvin goes further, arguing that development agencies have tended to adopt the rights-based perspective to ‘beneft from the moral authority and political appeal of the human rights discourse’ (2002, p. 4). He implies that, given ferce levels of competition for development funding, this approach is driven by a need to protect reputations and attract donor funding rather than any genuine desire to challenge the power structures that lead to inequality and injustice. Uvin even criticises Sen, on whose work much human rights discourse is based, for failing to complement his broad philosophical insights with

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some consideration of the practical implications of trying to apply them to development interventions. Uvin’s criticisms are broadly based on the premise that the language of human rights is the sole preserve of the Westerndominated development establishment. However, as Slim (2002) points out, the rights-based approach has also been adopted by grassroots movements around the world to bring about social change and justice for underprivileged groups. He describes, for example, how the language of human rights has played an important role in struggles against political repression in Latin America, apartheid in South Africa and injustices around land rights in South Asia. Slim concludes that the rights-based approach has the potential to bring about real change in the lives of oppressed people, as long as those who represent them at the local level are fully engaged in the change process. Slim’s argument has particular resonance for the IDM, within which disabled people in various parts of the world have joined together to redefne their identities, articulate their own experiences of disability and campaign for recognition of their rights to full participation. However, as discussed in the previous section, the genuine and meaningful involvement of disabled people at the grassroots level in this process is vital to its continued success. The potential of disabled people to transform their own lives and bring about real social change, rather than having change imposed on them, is illustrated by the rapid spread of self-help groups (SHGs) in India. Based on the well-established model of women’s SHGs in India, these are small groups comprising disabled people who have joined together to share information and work towards common goals, often with the support of development agencies. Case Study 5.2 describes how this grassroots movement has enabled ordinary disabled people to take responsibility for their own personal development and empowerment.

Case Study 5.2: Self-help groups in India Initially, these groups were issue-based and neither handled savings nor operated loans. Their primary concern was to obtain the benefts to which disabled people are entitled under the law from the state: medical certifcates, bus passes, help with buying aids and appliances, income supplements (pensions) and scholarships for education. While these benefts are statutory entitlements, most of the disabled individuals and their families were not aware of them. The few who were aware and attempted to access them met with apathy, insensitivity and corruption in the government system. Meeting and negotiating with government (continued)

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Coleridge and Venkatesh (2010) go on to describe how the Indian SHG model has evolved in several ways. While still sensitive to the individual concerns of group members, SHGs also focus on the collective needs of members within their local communities. There has been a shift towards supporting economic participation, through group savings and credit schemes, establishing linkages with mainstream fnancial institutions and even running collective livelihood enterprises. Finally, the formation of district-level federations has provided a platform for the voices of disabled people to be heard beyond the village level.

Disability mainstreaming and the twin-track approach National governments and international development agencies have increasingly responded to calls for development planning and programming to take account of disability, emanating mainly from the disability movement, by adopting an approach that is referred to as ‘disability mainstreaming’. This can be defned as follows:

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Disability mainstreaming [T]he process of assessing the implications for disabled people of any planned action, including legislation, policies and programmes, in all areas and at all levels. It is a strategy for making disabled people’s concerns and experiences an integral dimension of the design, implementation, monitoring and evaluation of policies and programmes in all political, economic and societal spheres so that disabled people beneft equally and inequality is not perpetuated. The ultimate goal is to achieve disability equality. (Albert et al., 2005, p. 2)

As this statement implies, disability mainstreaming is underpinned by the belief that disabled people should be enabled to access the same rights and opportunities as others, thus refecting the rights-based approach. The United Nations (2011) has published a collection of case studies from across the globe, illustrating best practice criteria in relation to disability mainstreaming and demonstrating how this approach can be instrumental to the efective implementation of the CRPD. These criteria are summarised in Box 5.4.

Box 5.4 •

Best practice criteria for mainstreaming disability initiatives

Adopt a rights-based approach. This, in turn, means that each mainstreaming initiative must: o o o o

Ensure equality and be non-discriminatory, allowing people to participate regardless of their disability, level of education, age, social and life skills, religion or ethnicity; Recognise the interaction between gender and disability; in this regard, data should be disaggregated by sex and by type of disability; Promote accessibility (built environment, information and communications technology, institutional, economic, social); Be participatory, actively and meaningfully involving people with disability in all matters concerning them in the process of forming policies and programmes; DPOs are key players in this process and development agencies need to consider investing in capacity-building and capacity development initiatives for its promotion;

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o

• • • • •

•

Be accountable to persons with disabilities, involving them directly in the decision-making process in projects/programmes and policies and creating accountability mechanisms for monitoring, complaint and feedback;

Increase awareness and understanding of disability at organisational, community and institutional levels so as to promote positive attitudes towards disability; Be results-based and produce a measurable change that contributes to the improvement of quality of life of people with disability; Be appropriately resourced, fnancially and in terms of human resources; Be sustainable, socially, culturally, economically, politically and environmentally; Be replicable, able to show how the product and/or process can be reproduced or adapted in other countries and contexts; replicability should be assessed taking into consideration contextspecifcity, since it is important to recognise that some practices in one country or context are not necessarily valid or transferable to the circumstances of another; Involve efective partnerships that show commitment of organisations, including government, academia, media, the UN, NGOs, and so on; inter-agency and inter-organisational eforts should be emphasised with the full involvement of DPOs and local governments to assure ownership of the initiative.

Source: Adapted from United Nations, 2011, pp. 7–8.

Disability mainstreaming is now the dominant strategy for promoting inclusion and equality for disabled people (WHO and World Bank, 2011). In practice, however, the efectiveness of this approach may be reduced if the necessary conditions are not in place to support the participation of disabled people as equal partners in development. This was illustrated by a study of an NGO programme designed to promote the social and economic rehabilitation of disabled people in a rural district of Cambodia (Gartrell and Hoban, 2013). This research found that discriminatory attitudes among NGO staf, reinforced by the low status of disabled people within Cambodia’s traditional hierarchy of social relations, often left programme participants feeling disempowered. Furthermore, they frequently faced signifcant cost barriers to participation in the programme and sometimes received inappropriate forms of assistance due to the conviction among NGO staf that disabled people did not know what was best for themselves. As the researchers concluded, this highlights the need for ‘government and development NGOs

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to address stigmatising social cultural perceptions and attitudes’ (p.  208) and for disabled people to be fully involved in decision-making processes during both the planning and the implementation of mainstreaming initiatives. Case Study 5.3 describes a seemingly more successful mainstreaming initiative in East Africa, designed to support disabled women entrepreneurs to develop their business skills.

Case Study 5.3: Mainstreaming in East Africa The ILO’s ‘Developing Entrepreneurship among Women with Disabilities’ project, implemented between 2005 and 2007, was aimed at helping disabled women to access mainstream entrepreneurship development activities in Ethiopia, Tanzania, Uganda and Zambia. Through this initiative, disabled women were supported to participate in business skills training sessions designed for women entrepreneurs in general. Training sessions covered entrepreneurial skills, product design and marketing strategies. A progress assessment, carried out in all four countries during 2006, revealed that virtually all disabled and non-disabled participants felt that integrated provision had great benefts, and was preferable to segregated provision, despite some diffculties in relation to the accessibility of buildings and training materials. One typical comment was ‘the non-disabled women were very cooperative, and in the end it was very fruitful, because we are all just people’. The integrated approach was thought to have helped disabled entrepreneurs to forge strong bonds with non-disabled entrepreneurs, leading to potential social and business support networks for the future. These views were shared by programme partner organisations. For example, representatives of local women entrepreneur associations noted that disabled women entrepreneurs who were previously reluctant to join, due to fear of rejection, were now clamouring to join. It was also noted, however, that some of the disabled entrepreneurs were limited by low confdence and a lack of literacy skills and would have beneftted from some support in these areas, prior to their participation in the mainstream programme. Although the programme had enabled around 450 disabled women to access business skills training, the assessment concluded that the integrated training would have worked even better if trainers and organisers had received more practical support and guidance on how to make reasonable accommodations for disabled participants. Source: Gilbert (2007).

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While this is a positive example of disability mainstreaming in practice, it does illustrate the importance of ensuring that necessary adaptations are made to the environment in which mainstreaming occurs, as well as drawing attention to the frequent need for specialist support to be provided – in this case to support potential benefciaries in acquiring the skills and confdence to make the most of the mainstream training provision. This dual focus on mainstreaming and the provision of specialist support is sometimes referred to as the twin-track approach, as illustrated by Figure 5.1. The twin-track approach entails mainstreaming disability into all areas of development planning while simultaneously supporting more focused initiatives designed to empower disabled people and the organisations that support them. The aim is to promote social inclusion and rights to equal participation for disabled people, without neglecting the need to ensure that the necessary support systems and services are in place to enable them to actively participate in development processes and to beneft from the mainstream opportunities available. These support systems may range from the provision of basic skills training and information services for individual disabled people to leadership training and capacity-building for DPOs. The value of the twin-track approach is now widely recognised by international development agencies. The International Disability and Development Consortium (IDDC), for example, has declared that ‘the full human rights of disabled persons will not be realised without a twin-track approach to inclusive development’ (2004, p. 3).

Twin-track approach

Addressing inequali˜es between disabled and non-disabled persons in all strategic areas of our work

Suppor˜ng specifc ini˜a˜ves to enhance the empowerment of people with disabili˜es

Equality of rights and opportuni˜es for persons with disabili˜es

Figure 5.1 A twin-track approach to disability and development Source: Adapted from Department for International Development (DFID), 2000, p. 11.

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Refection exercise 5.1 Disability mainstreaming aims to promote equality and enable disabled people to enjoy equal access to development opportunities, in areas such as education, employment, recreation, health and rehabilitation. Consider just one of these areas in the context of your own country, or a country with which you are familiar, and then list the barriers to efective disability mainstreaming that may exist. Consider how a twin-track approach might enable policymakers and/or practitioners to overcome the barriers that you have listed.

Summary of key points •

•

•

•

•

• •

The Independent Living Movement, which began in the United States and has spread around the world, provides an early example of disabled people coming together to campaign for greater freedoms within mainstream society. The rights of disabled people to full and equal participation in society are now widely recognised on the international stage. The IDM has played a key role in bringing this about by drawing attention to the injustices faced by disabled people and raising the profle of disability as a priority development issue. The IDM has grown into a structured, global civil rights movement, with democratic structures in place from the grassroots level upwards. International networks, such as DPI and IDA, have played a key role in coordinating the movement and representing the voices of disabled people on the international stage. The CRPD has created a mandate for DPOs to play a central role in monitoring its implementation. However, DPOs face a number of challenges, including resource limitations, conficting priorities and the risk of confict and fragmentation, both within and between groups. As a result, they may not always adequately represent the views of their own members, let alone the broader community of disabled people. It should not be assumed that donor funding and capacity-building initiatives will necessarily strengthen local organisations, particularly if these initiatives fail to take account of the views and priorities of the disabled people for whom they exist and on whom they often depend for their survival. Governments and development agencies are increasingly attempting to mainstream disability into their policies and programmes, to promote equality and full participation in line with the CRPD. The twin-track approach has gained increasing international acceptance as a means of ensuring that disabled people, as well as the organisations

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Discussion questions 1) How realistic is it to expect DPOs to take responsibility for monitoring the implementation of the CRPD, and how can they be supported to fulfl this role more efectively? 2) How can DPOs balance the need to satisfy donor expectations while also being responsive to the needs and priorities of their own members? 3) How relevant is the universal language of human rights, as refected in the CRPD, to the everyday lives of disabled people who are living in extreme poverty?

Suggested further reading Bezzina, L. (2019) ‘Disabled people’s organisations and the disability movement: Perspectives from Burkino Faso’. In African Journal of Disability 8(1): 1–10. Malinga, J. and Gumbo, T. (2016) ‘Advocacy and Lobbying: The Road Map from Charity to Human Rights’. In Iriarte, E., McConkey, R. and Gilligan, R. (Eds.) Disability and Human Rights: Global Perspectives. London: Palgrave, 49–67. Meyers, S. (2014) ‘Global civil society as megaphone or echo chamber?: Voice in the international disability rights movement’. In International Journal of Politics, Culture and Society 27: 459–476.

Notes 1 See Chapter 4 for more discussion on these three international agreements. 2 See Suggested further reading. 3 Organisations led by parents of disabled children, or by relatives of people with intellectual or multi-sensory impairments, are also commonly referred to as DPOs. 4 See Chapter 2 for more discussion on UPIAS and the ideas presented in its 1976 statement titled ‘The Fundamental Principles of Disability’. 5 See Suggested further reading. 6 See Suggested further reading.

References Albert, B., Dube, A. and Riis-Hansen, T. (2005) Has Disability Been Mainstreamed into Development Cooperation. DFID Disability Knowledge and Research Project. London: Department for International Development. Bezmez, D. and Yardimci, Y. (2010) ‘In search of disability rights: Citizenship and Turkish disability organizations’. In Disability and Society 25(5): 603–615.

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Bezzina, L. (2019) ‘Disabled people’s organisations and the disability movement: Perspectives from Burkino Faso’. In African Journal of Disability 8(1): 1–10. Carson, D. (2013) Ed Roberts: Father of Disability Rights. Indianapolis: Dog Ear Publishing. Charlton, J. (1998) Nothing About US without Us. Berkeley: University of California Press. Cobley, D.S. (2012) ‘Towards economic empowerment: Segregation versus inclusion in the Kenyan context’. In Disability and Society 27(3): 371–384. Cobley, D.S. (2015) ‘Typhoon Haiyan one year on: Disability, poverty and participation in The Philippines’. In Disability and the Global South 2(3): 686–707. Coleridge, P. and Venkatesh, B. (2010) ‘Community Approaches to Livelihood Development: Self-help Groups in India’. In Barron, T. and Ncube, J. (Eds.) Poverty and Disability. London: Leonard Cheshire Disability, 177–213. Department for International Development (DFID) (2000) Disability, Poverty and Development. London: DFID. Disabled People’s International (DPI) (2018) DPI United: A  Voice of Our Own. Retrieved on 11 November 2021 from www.dpi.org/dpi-members.html Driedger, D. (1989) The Last Civil Rights Movement: Disabled People’s International. London: Hurst & Co Ltd. Dube, A., Hurst, R., Light, R. and Malinga, J. (2005) Promoting Inclusion? Disabled People, Legislation and Public Policy. London: DFID. Retrieved on 21 November 2021 from https://assets.publishing.service.gov.uk/media/57a08c79e5274a27b2001219/ thematic_legis.pdf Gartrell, A. and Hoban, E. (2013) ‘Structural vulnerability, disability and access to non-governmental organisation services in rural Cambodia’. In Journal of Social Work in Disability & Rehabilitation 12(3): 194–212. Gilbert (2007) Link and Learn: Inclusion of Women with Disabilities in the ILO WEDGE Programme. Progress Assessment in four African Countries. Geneva: International Labour Organization. Retrieved on 3 January 2021 from www.voced. edu.au/content/ngv%3A32049 Huang, S. (2019) ‘Ten years of the CRPD’s adoption in China: Challenges and opportunities’. In Disability and Society 34(6): 1004–1009. Hurst, R. (2000) The International Disability Rights Movement. Text of public lecture given on 11th October at the Centre for Disability Studies, University of Leeds. Retrieved on 17 October 2021 from https://disability-studies.leeds.ac.uk/ wp-content/uploads/sites/40/library/Hurst-Disability-Rights.pdf IDA (International Disability Alliance) (2020) Increasingly Consulted But Not Yet Participating. IDA global survey on participation of organisations of persons with disabilities in development programmes and policies. Retrieved on 31 October 2021 from www.internationaldisabilityalliance.org/sites/default/fles/ida_ global_survey_complete_report_fnal.pdf IDDC (International Disability and Development Consortium) (2004) Inclusive Development and the UN Convention. IDDC Refection Paper. Retrieved on 30 October 2021 from www.un.org/esa/socdev/enable/rights/ahc3iddc.pdf Lang, R. and Upah, L. (2008) Scoping Study: Disability Issues in Nigeria. DFIDcommissioned fnal report. Retrieved on 31 October 2021 from https://studylib. net/doc/13390397/scoping-study – disability-issues-in-nigeria-fnal-report Malinga, J. and Gumbo, T. (2016) ‘Advocacy and Lobbying: The Road Map from Charity to Human Rights’. In Iriarte, E., McConkey, R. and Gilligan, R. (Eds.) Disability and Human Rights: Global Perspectives. London: Palgrave, 49–67.

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Meyers, S. (2014) ‘Global civil society as megaphone or echo chamber?: Voice in the international disability rights movement’. In International Journal of Politics, Culture and Society 27: 459–476. Meyers, S. (2016) ‘NGO-ization and Human Rights Law: The CRPD’s civil society mandate’. In Laws 5(2): 21. Mikkelsen, B. (2005) Methods for Development Work and Research: A New Guide for Practitioners. London: SAGE. Nuth, M. (2018) ‘How context infuences the ideologies and strategies of disabled people’s organisations: A case study from Cambodia’. In Disability and Society 33(7): 1046–1060. Oliver, M. (1983) Social Work with Disabled People. Basingstoke: Macmillan. Oliver, M. (1990) The Politics of Disablement. Basingstoke: Macmillan. Pettinichio, D. (2017) ‘Elites, Policy and Social Movements’. In Wejnert, B. and Parigi, P. (Eds.) On the Cross Road of Polity, Political Elites and Mobilisation. Bingley: Emerald Group Publishing Limited, 155–190. Rehabilitation International (1980) ‘Rehabilitation International’s charter for the 80s’. In American Journal of Occupational Therapy 34: 645–647. Retrieved on 11 August 2021 from http://ajot.aota.org/article.aspx?articleid=1890015 Slim, H. (2002). ‘Making moral low ground: Rights as the struggle for justice and the abolition of development’. In The Fletcher Journal of Development Studies XVII: 1–5. Stein, M. and Lord, J. (2012) ‘Forging Efective International Agreements: Lesson for the UN Convention on the Rights of Persons with Disabilities’. In Heymann, J. and Cassola, A. (Eds.) Making Equal Rights Real: Taking Efective Action. Cambridge: Cambridge University Press, 27–50. Thomas, P. (2005) Disability, Poverty and the Millennium Development Goals: Relevance, Challenges and Opportunities for DFID. DFID Knowledge and Research Programme. Retrieved on 5 September  2021 from https://gsdrc.org/documentlibrary/disability-poverty-and-the-millennium-development-goals-relevancechallenges-and-opportunities-for-dfd/ UN (United Nations) (2006) Convention on the Rights of Persons with Disabilities and Optional Protocol. Washington: United Nations. UN (United Nations) (2011) Best Practices for Including Persons with Disabilities in All Aspects of Development Eforts Washington: United Nations. Retrieved on 14 November  2021 from www.un.org/disabilities/documents/best_practices_ publication_2011.pdf Uvin, P. (2002) ‘On Moral High Ground: The Incorporation of Human Rights by the Development Enterprise’. In The Fletcher Journal of Development Studies XVII: 1–11. WHO (World Health Organization) and World Bank (2011) World Report on Disability. Geneva: WHO. Whyte, S. and Muyinda, H. (2007) ‘Wheels and New Legs: Mobilization in Uganda’. In Ingstad, B. and Whyte, S. (Eds.) Disability in Local and Global Worlds. Berkeley: University of California Press, 287–310. Yeo, R. (2005) Disability, Poverty and the New Development Agenda. London: DFID. Retrieved on 4 July 2021 from www.dfd.gov.uk/r4d/PDF/Outputs/Disability/ RedPov_agenda.pdf You, D.C. and Hwang, S.K. (2018) ‘Achievements of and challenges facing the Korean disability movement’. In Disability and Society 33(8): 1259–1279. Young, R., Reeve, M. and Grills, N. (2016) ‘The functions of disabled people’s organisations (DPOs) in low and middle-income countries: A literature review’. In Disability, CBR and Inclusive Development 27(3): 45–71.

6

Environmental accessibility

Accessibility is a broad, multidimensional concept relating to the ease with which a person can interact with the environment within which he or she lives. For a disabled person to be able to access the environment, whether it be a building, the transport system, information, technology, a piece of equipment or a service, the environment must obviously be physically accessible. However, to be fully accessible these various environmental features also need to be available, reachable, usable, afordable, welcoming and known about, so that everyone in society is free and able to make use of them. This broad interpretation of the accessibility concept is refected in the following defnition:

Accessibility The extent to which products, systems, services, environments and facilities are able to be used by a population with the widest range of characteristics and capabilities (e.g. physical, cognitive, fnancial, social and cultural, etc.), to achieve a specifed goal in a specifed context. (Persson et al., 2014)

Accessibility is a major factor in determining the extent to which disabled people are able to live independently and enjoy the freedom to participate fully in society – a fundamental human right which is enshrined within the pages of the CRPD and reinforced through national legislation in many countries. Accessibility thus relates directly to the promotion of equality and non-discrimination for disabled people. The critical importance of this issue was summed up by Ronald McCallum (2010), the Chairman of the CRPD Committee, who opened a conference on this topic at UN Headquarters in Geneva by declaring that ‘we cannot think of anything more crucial DOI: 10.4324/9781003256038-6

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to persons with disabilities than accessibility’. There is also a business case for promoting accessibility, since businesses that provide accessible services and products are better placed to tap into the potentially signifcant spending power of disabled people. It does not stop there either because promoting accessibility is ultimately about creating a fairer, richer and more inclusive society for all. As the CRPD Committee has observed, accessibility should be viewed ‘as a way of investing in society and as an integral part of the sustainable development agenda’ (UN, 2014, Paragraph 4). This chapter starts with an examination of the various societal barriers which combine to prevent or reduce accessibility, using Harris and Enfeld’s (2003) conceptual framework known as the Wall of Barriers. This is followed by a discussion around the CRPD’s perspective on accessibility and the extent to which this is reinforced through national legislation. The chapter then goes on to explore the concept of universal design (UD), which is often viewed as a common sense strategy for creating built environments that are accessible to all users (Hamrai, 2016). The potential use of the WHO’s (2001) International Classifcation of Functioning, Disability and Health (ICF) as a tool for putting UD solutions into practice is also considered. Then there is a brief discussion around the role of assistive technology in supporting disabled people to overcome accessibility challenges and interact more efectively with their environments. Finally, with technological advances rapidly transforming the world in which we live, the issue of accessibility within the feld of information and communications technology (ICT) is explored. This discussion highlights the need to bridge the so-called digital divide, so that the huge potential of digital technology to support participation and inclusion is not wasted.

Societal barriers A wide range of societal barriers, from inaccessible buildings and transport systems to discriminatory processes and attitudes, combine to prevent disabled people from getting around, interacting with others, enjoying leisure and educational activities, making use of services and earning a living. These societal barriers reinforce social exclusion and prevent many disabled people from living their lives to the full. From a social model perspective, the removal of societal barriers is essential to reducing and ultimately eradicating disability itself.1 The social model thus challenges built environment practitioners and service providers to address the disabling aspects of their practices and the services they provide, recognising the diverse range of accessibility needs that disabled people have (Jackson, 2018). While the assertion that societal barriers actually create disability is contested, given the lack of consensus around the meaning of disability itself, it is widely accepted that they greatly exacerbate the problems faced by disabled people and often prevent them from accessing their now well-recognised rights to full and equal participation in society. The

Environmental accessibility Physical Public buildings

Instuonal Roads

Recreaon

Class system

Educaon

Public Informaon transport systems Oÿces Housing Leisure

Family

Factories

Communicaon systems

Religion

Polics

Health services Social services

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Inspiraonal

Of low Bi“er intelligence Brave Cheerful in adversity Needs special Needs services a cure Aggressive Marvellous

Employment Foundaons of fear, pity, superiority, revulsion

Courageous

Needs charity

Figure 6.1 The wall of barriers Source: Adapted from Harris and Enfeld (2003, p. 180) with the permission of Oxfam, Oxfam House, John Smith Drive, Cowley, Oxford OX4 2JY UK www.oxfam.org.uk. Oxfam does not necessarily endorse any text or activities that accompany the materials nor has it approved the adapted diagram.

Wall of Barriers, shown in Figure 6.1, provides a useful conceptual framework which groups societal barriers into three distinct categories: physical, institutional and attitudinal. Physical barriers The left side of the wall represents the physical barriers. The most obvious man-made physical barriers that disabled people have to contend with are those that relate to the built environment, such as badly designed public buildings, poorly maintained pavements, inaccessible transportation and inaccessible ICT systems. Merilainen and Helaakoski (2001) distinguish between ‘access to’ the built environment, or simply being able to reach and enter places, and ‘accessibility of’ the built environment, which is about being able to easily make use of the built environment without assistance. Construction programmes need to consider both of these elements, to ensure that new building projects are as accessible as possible from the outset. For example, people with intellectual impairments or mental health conditions may beneft from design features that allow them to easily obtain and process the information necessary to enable them to fnd their way around a building, such as clear, concise and consistent signage (Castell, 2008). As Berman-Bieler (2010) points out, the additional costs of making infrastructure fully accessible to all are thought to be less than one per cent at the design stage, as compared with the far greater cost of making alterations or renovations at a later stage. In reality, however, neighbourhoods, buildings

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and transportation systems are often designed in such a way as to confne disabled people to limited zones of interaction (Imrie, 2004), rather than enabling full and free access to all aspects of the environment in which they live. The built environment is made up of various interconnected domains (buildings, roads, transportation, ICT and so on), so accessibility improvements in one domain will bring limited benefts to disabled people if other domains are not equally accessible (WHO and World Bank, 2011). For example, inaccessible or non-existent transportation can prevent access to employment, educational, health and recreation services, even if those services are fully accessible in other ways. Institutional barriers The middle section of the wall shows institutional barriers, created by the segregation or exclusion of disabled people through the workings of key institutions, such as the family, the education system, health services, employment organisations or the political system. For disabled people, these barriers arise when institutions fail to take full account of their needs or discriminate against them in various ways. For example, Lord (2010) describes a range of discriminatory institutional practices that often lead to disabled people being denied the opportunity to vote in elections, such as the absence of legislation and practices that ensure access to polling stations, voting booths and voting information. A useful distinction can be made between direct and indirect forms of institutional discrimination. Discriminatory job recruitment criteria, for example, may directly afect the chances of disabled people gaining employment, while discriminatory attitudes within workplaces may less directly (or indirectly) afect working conditions, job security and promotion chances. This distinction is captured in the following defnition:

Institutional discrimination [I]t incorporates the extreme forms of prejudice and intolerance usually associated with individual or direct discrimination, as well as the more covert and unconscious attitudes which contribute to and maintain indirect and/or passive discriminatory practices within contemporary organisation. (Barnes, 1991, p. 3)

Attitudinal barriers The right side of the wall represents attitudinal barriers, where descriptions or views of disabled people are based on negative or patronising

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generalisations (such as ‘tragic’ or ‘brave’) rather than any knowledge or appreciation of their individual strengths and weaknesses. This reflects a tendency to homogenise disabled people on the basis of assumed common characteristics that imply weakness, dependency and inferiority. The prevalence of attitudinal barriers is widely reported in the literature.2 The World Report on Disability (WHO and World Bank, 2011), for example, states that ‘negative imagery and language, stereotypes and stigma – with deep historic roots – persist for people with disabilities around the world’ (p. 6), while also noting that attitudinal barriers will often persist long after physical barriers have been removed. Article 8 of the CRPD acknowledges the often-devastating impact of attitudinal barriers, calling on State Parties to implement public awareness campaigns that promote positive perceptions of disability, highlighting the capabilities of disabled people and how they can positively contribute to society, through the education system and the media. Intersecting barriers While the Wall of Barriers provides a neat conceptual framework, it should be noted that, in reality, diferent types of barriers are often interrelated and may interact with each other to create multiple access issues in any given situation. Taking the example of travelling on public buses, physical barriers to access are usually fairly obvious. However, there may also be institutional barriers (such as the failure of bus or train companies to reserve spaces for disabled people) and attitudinal barriers, which may lead to overcharging or even outright refusal to admit disabled passengers. There may also be communication barriers, particularly for those with hearing impairments, and psychological barriers (such as fears for personal safety). Thus, it follows that eforts to promote inclusion and participation need to take account of the full range of barriers that exist in each and every situation, which may difer from one person to another, and how these barriers interact with each other. It may even be the case that removing a barrier for one person may create a new barrier for someone else. Lid (2014) illustrates this point with the example of a pedestrian crossing which became harder to navigate for Trond, a man with a visual impairment, when it was redesigned to make it easier for wheelchairs. Specifcally, the reshaping of the curb to allow for wheelchairs led to him becoming confused and disorientated. Furthermore, a political barrier emerged when he raised this issue with the local council and his views were disregarded, despite him being a member of the council. This shows how environmental changes can both eliminate and create disabling barriers, highlighting the need to take account of difering individual perspectives, as well as the complex ways in which societal barriers intersect and reinforce each other.

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Refection exercise 6.1 Use the Wall of Barriers framework to identify the physical, institutional and attitudinal barriers that exist in a country with which you are familiar. How do these barriers prevent disabled people from fully participating in society? Consider participation in areas such as education, healthcare, employment and community activities.

Accessibility in the CRPD The principle of accessibility, the importance of which had previously been highlighted in Rule 5 of the 1993 UN Standard Rules, is frmly embedded in the CRPD. It is frst referred to in the Preamble, which recognises the importance of accessibility to the physical, social, economic and cultural environment, to health and education and to information and communication, in enabling persons with disabilities to fully enjoy all human rights and fundamental freedoms. (Paragraph v) Accessibility is then identifed as one of the overarching general principles of the Convention, listed in Article 3, and also referred to in several other articles, such as Article 12 (access to legal support), Article 13 (access to justice) and Article 31 (accessibility of the CRPD itself). Article 9, set out in full in Box 6.1, is devoted entirely to the issue of accessibility. This Article places a frm obligation on ratifying parties to identify and remove barriers to access, such as those discussed in the previous section. The scope and detail of Article 9 reveals a clear intent to capture the multiple dimensions of the accessibility concept. Reference is made to the need for access to information and live assistance, for example, as well as the important issue of afordability. The inclusion of obligations around afordability adds an economic dimension, which recognises that disabled people are often disadvantaged by a disproportionate burden of cost when they access services and facilities within their communities. This broad view of accessibility presented in Article 9, together with the numerous other references throughout the Convention, underlines the importance of accessibility as a ‘constituent element of robust substantive equality and most surely a constituent element of each of the substantive rights in the CRPD’ (Lord, 2010, p. 3). In other words, accessibility is both a right in itself and a prerequisite for the attainment of all other rights upheld by the Convention.

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Box 6.1 CRPD, Article 9 – Accessibility 1) To enable persons with disabilities to live independently and participate fully in all aspects of life, State Parties shall take appropriate measures to ensure to persons with disabilities access, on an equal basis with others, to the physical environment, to transportation, to information and communications, including information and communications technologies and systems, and to other facilities and services open or provided to the public, in both urban and rural areas. These measures, which shall include the identifcation and elimination of obstacles and barriers to accessibility, shall apply to, inter alia: a) Buildings, roads, transportation and other indoor and outdoor facilities, including schools, housing, medical facilities and workplaces; b) Information, communications and other services, including electronic services and emergency services. 2) State Parties shall also take appropriate measures: a) To develop, promulgate and monitor implementation of minimum standards and guidelines for the accessibility of facilities and services open or provided to the public; b) To ensure that private entities that ofer facilities and services which are open or provided to the public take into account all aspects of accessibility for persons with disabilities; c) To provide training for stakeholders on accessibility issues facing persons with disabilities; d) To provide in buildings and other facilities open to the public signage in Braille and in easy to read and understand forms; e) To provide forms of live assistance and intermediaries, including guides, readers and professional sign language interpreters, to facilitate accessibility to buildings and other facilities open to the public; f) To promote other appropriate forms of assistance and support to persons with disabilities to ensure their access to information; g) To promote access for persons with disabilities to new information and communications technologies and systems, including the Internet; h) To promote the design, development, production and distribution of accessible information and communications technologies and systems at an early stage, so that these technologies and systems become accessible at minimum cost.

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Article 9 addresses accessibility in both the public and private spheres. In the drafting process, however, there was some debate around the extent to which accessibility rights should apply in the private sphere (Schulze, 2010). The resulting compromise led to a slightly reduced scope in relation to the private sphere, with obligations applying only to ‘facilities and services open or provided to the public’ (Paragraph 1) rather than to all private facilities and services. This limited scope is also refected in the slightly ambiguous wording of Paragraph 2b, which requires private entities to merely ‘take into account all aspects of accessibility’. Reasonable accommodation Another signifcant area of compromise, closely linked to the accessibility provisions, relates to the principle of ‘reasonable accommodation’:

Reasonable accommodation [N]ecessary and appropriate modifcation and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms (Article 2).

This principle recognises that the capacity of State Parties to implement accessibility changes is likely to vary considerably from one country to another and even within countries from one setting to another (from urban to rural settings, for example). The CRPD thus acknowledges the need for accessibility rights to be progressively realised, taking into account the resources and technical capacity available to make the necessary changes. This is reinforced in Article 4(2), which refers to the progressive realisation of economic, social and cultural rights. The World Report on Disability (WHO and World Bank, 2011) also recognises the principle of reasonable accommodation, arguing that a gradual, phased approach to introducing accessibility standards may be the most efective strategy in low-income countries, where resources are often lacking. For example, laws covering construction in low-income rural areas might initially focus only on ground foor access, with more comprehensive standards being introduced later as part of a strategic plan. The CRPD Committee (UN, 2014) has noted the need to consider issues around personal dignity when interpreting the concept of reasonable accommodation. For example, a private restaurant owner may fnd it cheaper to make the back door to the restaurant accessible rather than altering the main entrance, but the need to enter through a back door could be demeaning for disabled diners.

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The role of disabled people and Disabled People’s Organisations (DPOs) The CRPD emphasises the need to involve disabled people themselves, as well as the organisations that represent them, in all matters concerning them. In relation to accessibility, it can be inferred from Article 4 (Paragraph 3) that disabled people should be fully involved in both the identifying of accessibility barriers and designing strategies to remove them, a point that is reinforced by the CRPD Committee in its General Comment on Article 9 (UN, 2014). This aligns with the principle of ‘nothing about us without us’, the motto of the international disability movement, and also makes perfect sense intuitively given that disabled people are surely best placed to understand the complex range of accessibility barriers that they encounter on a daily basis. In practice, however, the meaningful involvement of disabled people occurs all too rarely. Boys (2017) points out, for example, that architectural practices typically view disabled people as passive users of buildings and services rather than drawing on their diverse experiences and perspectives to shape these practices in a meaningful way.

Legislation and implementation The legislative framework, encompassing laws, regulations and standards, is an essential tool for defning and upholding accessibility rights because where appropriate legislation is in place, disabled people have a legal basis for claiming their accessibility rights. This may not be straightforward in practice though because legal challenges are often costly and the burden of proof falls on the rightsholder, which means that proof of a violation must be established. Additionally, rights may be unexpectedly denied on the basis of undue burden, because the principle of reasonable accommodation is subjective and open to interpretation. Nevertheless, the need for a legislative approach is widely recognised, with many countries now having disability-specifc legislation (incorporating accessibility rights) in place that broadly aligns with the principles of the CRPD. The impact of accessibility legislation is often greatly reduced due to ineffective implementation. In relation to public transport, for example, widespread non-compliance with accessibility legislation in many countries of the Global South is largely due to a failure on the part of governments to allocate adequate resources for monitoring and enforcement (Roberts and Babinard, 2005). Enforcement and compliance issues are not confned to the Global South, however. In the Australian context, for example, Jackson (2018) notes that built environment practitioners often regard compliance with accessibility legislation as a regulatory exercise, leading to a tick-box mentality that does little to improve outcomes for disabled people.3 Further, impediments to the efective implementation of accessibility legislation include a lack of technical knowledge within local authorities, insufcient training for relevant stakeholders and the limited involvement of disabled people themselves (UN, 2014). To improve compliance, the World Report on Disability (WHO and World Bank, 2011) recommends that mandatory accessibility standards should form part

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of building regulations, so that construction and occupancy permits cannot be issued until standards have been met at both the design and completion stages. Moreover, the report recommends that accessibility audits of existing buildings, facilities and services are conducted, ideally with the involvement of disabled people, with the results then fed into relevant aspects of law making, building design, programme development and service provision. This has been taking place in Malaysia, for example, where disabled people have been involved in conducting access audits, as described in Case Study 6.1.

Case Study 6.1: Improving accessibility in Malaysia In recent years, Malaysian law has changed to ensure that disabled people have the same rights and opportunities as others. Between 1990 and 2003, Malaysia introduced and revised the standard codes of practice on accessibility and mobility for disabled people. In 2008, the People with Disabilities Act was introduced. This legislation, harmonising with the CRPD, promotes rights of access to public facilities, housing, transport and ICT, as well as to education and employment, cultural life and sport. The government priorities are to increase public awareness of the needs of disabled people and encourage young designers to create more innovative and inclusive designs. Local authorities in the country require architects and builders to adhere to the Malaysian Standard Codes of Practice for building plans to be approved. After a building is constructed, an access audit, carried out by disabled people, examines its usability. The purpose of the audit is to: • •

•

Increase awareness among planners and architects about barrierfree environments for disabled people; Ensure, in both new buildings and retroftting, the use of universal design concepts and adherence to the standard codes relating to disabled people; Evaluate the degree of access to existing public buildings and recommend improvements.

University schools of architecture are a focus of education and research efforts for both students and practising professionals. For example, the International Islamic University in Malaysia recently introduced “barrier-free architecture” as an elective subject in its Bachelor of Architecture programme. Source: Adapted From WHO and World Bank, 2011, p. 176.

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Universal Design (UD) There have been various approaches to achieving architectural accessibility for disabled people, when designing and constructing buildings, transport systems, equipment and other components of the built environment. Early approaches, such as disabled-friendly design and barrier-free design (which was a response to the Independent Living Movement in the United States),4 have typically required specialist solutions and resulted in features that ofer limited choices, within a predominantly non-accessible environment, and may only be suitable for people with certain types of impairment. Given the huge diversity among disabled people, together with the varying needs and abilities among all people, the overall impact of these early approaches was often quite limited. Thus, the concept of UD emerged in the civil rights era through the work of disabled designers who recognised the need for environmental design to take into account the accessibility needs of all marginalised populations (Hamrai, 2016). The term itself was frst coined by Ronald Mace (1985), a disabled architect, product designer and educator, who described UD as a way of designing a building or facility, at little or no extra cost, so that it is both attractive and functional for all people, disabled or not. (p. 147) This, he argued, would require interdisciplinary cooperation and coordination among architects, product designers, manufacturers, engineers and builders. As Lid (2014) points out, interdisciplinary cooperation should also extend to rehabilitation professionals due to their knowledge of impairment and ageing processes, as well as users, such as disabled people and their representative organisations, who understand accessibility from their own individual experiences. The scope of the UD concept itself, as articulated by Mace, has also since been expanded, as refected in the following CRPD defnition:

Universal Design [T]he design of products, environments, programmes and services to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design. (UN, 2006, Article 4(f))

As can be seen from this defnition, UD requires the needs of all potential users to be taken into account, so the focus is not just on disability. The aim of UD is to create a truly inclusive environment that enables the participation of everyone, regardless of their personal characteristics and abilities.

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This is clearly spelt out in the Stockholm Declaration, adopted by the European Institute for Design and Disability (EIDD) in 2004, which refers to Universal Design as ‘Design for All’:

Excerpt from the Stockholm Declaration Design for All aims to enable all people to have equal opportunities to participate in every aspect of society. To achieve this, the built environment, everyday objects, services, culture and information – in short, everything that is designed and made by people to be used by people – must be accessible, convenient for everyone in society to use and responsive to evolving human diversity. (EIDD, 2004, p. 1)

The seven original principles of UD, copyrighted to the Center for Universal Design in North Carolina, are set out in Box 6.2.

Box 6.2 • • • • • • •

Original principles of Universal Design

Equitable Use: the design is useful and marketable to people with diverse abilities. Flexibility in Use: the design accommodates a wide range of individual preferences and abilities. Simple, Intuitive Use: use of the design is easy to understand, regardless of the user’s experience, knowledge, language skills or current concentration level. Perceptible Information: the design communicates necessary information efectively to the user, regardless of ambient conditions or the user’s sensory abilities. Tolerance for Error: the design minimises hazards and the adverse consequences of accidental or unintended actions. Low Physical Efort: the design can be used efciently and comfortably and with a minimum of fatigue. Size and Space for Approach and Use: appropriate size and space is provided for approach, reach, manipulation and use, regardless of the user’s body size, posture or mobility.

Source: Adapted from Center for Universal Design, 1997.

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The task of putting UD into practice, in line with these principles, is likely to be especially challenging in resource-poor settings, where technical capacity is often lacking and there may be low levels of awareness around disability rights. Recognising the need to take account of difering economic, social and cultural settings, a more fexible and holistic version of UD was developed by the Center for Inclusive Design and Environmental Access (IDEA) at the University of Bufalo, based on the premise that UD features should support social participation, social identity and cultural ft, as well as functioning. This expanded conceptual framework is encapsulated in a revised set of specifc goals, shown in Box 6.3. This new version expands on the original principles of UD, placing a greater emphasis on the need to promote social dignity, recognise cultural diversity and allow for resource limitations. In line with the principle of reasonable accommodation highlighted in the CRPD, Steinfeld et al. (2012) argue that the process of UD should involve gradual and continuous improvement, recognising that what is realistically achievable will vary from one context to another, rather than imposing an absolute standard on each situation. Moreover, they propose a renewed defnition of the concept, encapsulating the essence of the eight goals:

Box 6.3 • • • • • • • •

Eight goals of Universal Design

Body Fit: accommodating a wide range of body sizes and abilities. Comfort: keeping demands within desirable limits of body function. Awareness: ensuring that critical information for use is easily perceived. Understanding: making methods of operation and use intuitive, clear and unambiguous. Wellness: contributing to health promotion, avoidance of disease and prevention of injury. Social Integration: treating all groups with dignity and respect. Personalisation: incorporating opportunities for choice and the expression of individual preferences. Cultural Appropriateness: respecting and reinforcing and the social and environmental context of any design project.

Source: Steinfeld et al., 2012, p. 90.

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Renewed defnition of UD Universal design is a process that enables and empowers a diverse population by improving human performance, health and wellness, and social participation. (Steinfeld et al., 2012, p. 29)

Berman-Bieler (2010) notes that this culturally sensitive interpretation of UD has much potential as a strategy for reducing poverty and creating a more inclusive society. The strategy can be applied across all sectors, from health and education to housing and infrastructure, to support inclusive development policies and programmes. As she goes on to point out, developing inclusive general strategies is far more cost-efective and sustainable than trying to meet the needs of specifc groups within society through specialist interventions. Providing ramped access to a water pump, for example, can beneft all users by making it possible to bring large, wheeled water containers right up to the pump (thus reducing the number of trips needed), as well as making the pump accessible for wheelchair-users (Raheja, 2016). This does not imply that specialist disability services are not needed or should be disbanded any time soon. However, it is only by working towards inclusive solutions within mainstream society that disabled people will be able to reduce their reliance on such services. In the Global South context, where it may not always be possible to replicate some of the expensive UD innovations that have been introduced in wealthy countries, there is a particular need for practical and afordable UD solutions, such as lower frst steps, priority seating, improved lighting and the removal of turnstiles (WHO and World Bank, 2011). New Urban Agenda The renewed concept of UD is clearly refected in the New Urban Agenda, a framework for inclusive and sustainable urban development that was adopted at the 2016 UN Conference on Housing and Sustainable Urban Development (Habitat III) in Quito, Equador (UN, 2017). The Agenda sets out standards and principles to guide ‘the planning, construction, development, management, and improvement of urban areas’ (p.  iv), with a view to addressing both spatial segregation and the economic and social exclusion of marginalised groups within urban spaces. Cultural diversity is recognised as a ‘source of enrichment for humankind’ (para. 10), with an important role to play in fostering the sustainable development of cities and empowerment of citizens. Participation and civic engagement are viewed

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as essential to engendering a sense of belonging and ownership among all (para. 13(b)). The Agenda also calls for the progressive realisation of goals such as adequate housing and universal access to public goods and services (para. 13(a)), thus taking account of resource limitations. While the concept of UD is not referred to explicitly, further evidence of its infuence can be seen in the shared vision that is captured in the following excerpt:

Habitat III – A Shared Vision for Urban Development We share a vision of cities for all, referring to the equal use and enjoyment of cities and human settlements, seeking to promote inclusivity and ensure that all inhabitants, of present and future generations, without discrimination of any kind, are able to inhabit and produce just, safe, healthy, accessible, afordable, resilient and sustainable cities and human settlements to foster prosperity and quality of life for all. (UN, 2017, para. 11)

Universal design and the ICF The ICF views disability as an umbrella term for functional limitations in relation to body structure, activities and participation, with disability arising when an individual (with a health condition) negatively interacts with his or her environment (WHO, 2001).5 This understanding of disability, as arising from the interaction between an individual and the environment, provides a useful conceptual basis for UD. The ICF highlights the impact of the disabling environment while also drawing attention to individual factors, such as bodily limitations and individual experiences, which in turn may be shaped by personal factors such as gender, age and ethnicity. This interactional view of disability goes beyond the relatively narrow scope of the social model, which tends to underplay the disabling impact of individual factors (Shakespeare, 2006), and the individual model, which disregards the disabling impact of the environment (Oliver, 1996). Also, the ICF emphasises the universality of disability, recognising that all of us may experience difculties in functioning and interacting from time to time whether or not we have a formal diagnosis of disability. Hence, it can be useful in terms of analysing health status from a quality of life perspective for all people (Persson et al., 2014). The ICF is thus highly compatible with UD and can potentially serve as a useful tool for identifying the complex range of environmental and personal factors that may need to be considered

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by product designers and service providers, as well as researchers, to bring about preferred outcomes for all in relation to functioning, activities and community participation (Steinfeld and Danford, 2006).

Refection exercise 6.2 The ICF views disability in terms of reduced body function, activity restrictions and participation limitations. Use the ICF as a guiding framework to identify three factors that might reinforce disability within an organisation that you are familiar with. Then try to identify three potential solutions based on the principles of universal design.

The role of assistive technology Assistive technology (AT) is an umbrella term, encompassing ‘all forms of technology that improve the “functional capabilities” of individuals with disabilities – from low-tech apparatuses that lower the height of a desk to high-tech voice-activated devices’ (Kulow and Thomas, 2019, p. 259). Such devices can enable disabled people to interact more efectively with their environment or even to transform the environment itself. In the United States, for example, the incorporation of AT within school environments has greatly increased the participation of disabled children within mainstream education, enabling them to enjoy a more customised learning experience and to form better relationships with other children (Lynch, 2016). AT can thus play a crucial role in facilitating access and supporting participation. The CRPD acknowledges this, placing a general obligation on State Parties to promote the research and development of AT, ‘giving priority to technologies at an afordable cost’ (Article 4(g)), while also specifcally highlighting the importance of AT within the feld of rehabilitation (Article 26, Paragraph 3). With AT becoming increasingly available and afordable (Kulow and Thomas, 2019), there is growing scope for its use in resource-poor settings of the Global South. In the feld of employment, for example, AT solutions can increase the productivity of disabled people and reduce the costs of employing them. However, there is currently a limited, uneven and fragmented body of research evidence on the extent to which disabled people are able to access and utilise AT in the Global South (WHO, 2019). One scoping review (Matter et al., 2017) of 252 studies conducted in low- and middle-income countries (LMICs) found that the majority of them (over 80%) focused on AT for those with mobility and vision needs, with very few covering AT for those with hearing, communication and cognition needs.

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ICT, the Information Society and the digital divide Rapid developments within the feld of ICT are constantly creating new opportunities for people around the world to access information, engage in new activities and connect with each other. This has led to the emergence of a global information economy, sometimes referred to as the ‘Information Society’ (Garcia, 2016). In 2003, the frst phase of the World Summit on the Information Society (WSIS) in Geneva declared a commitment to building a fair and inclusive Information Society, as outlined in the Declaration of Principles.

The Information Society We, the representatives of the peoples of the world, assembled in Geneva from 10–12 December 2003 for the frst phase of the World Summit on the Information Society, declare our common desire and commitment to build a people-centred, inclusive and developmentoriented Information Society, where everyone can create, access, utilize and share information and knowledge, enabling individuals, communities and peoples to achieve their full potential in promoting their sustainable development and improving their quality of life. Source: WSIS, 2003a, Paragraph A1

As the various outcome documents that emerged from the Geneva Summit highlight, the rise of the Information Society brings with it the promise of prosperity but also the risk of rising inequality. Many people, especially those living in poorer communities of the Global South and minority groups in all countries, are excluded from the benefts of this new age of digital technology, with the gap between those who are information rich and information poor becoming wider (Feather, 2018). This digital gap, between countries, groups and individuals, is sometimes referred to as the digital divide.

The digital divide The gap between individuals, households, businesses and geographic areas at diferent socio-economic levels with regard to their opportunities to access information and communication technologies (ICTs). Source: Organisation for Economic Cooperation and Development (OECD), 2001. P. 5

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Disabled people are often disadvantaged due to the digital divide, even in the Global North. In the United States, for example, national survey data has revealed that disabled people are less likely than non-disabled people to own a computer or have access to the internet (US Department of Commerce, 2013). More widely, various international and national surveys including both high- and low-income countries, conducted over the past decade, show that disabled people consistently have less access to the internet than non-disabled people (a gap of up to 30 percentage points in some countries) and that households with disabled members are similarly disadvantaged (UNDESA, 2018). Another dimension of the digital divide relates to security. For example, internet users with visual impairments have been found to be more vulnerable to cyberattacks due to limited or inaccessible visual cues and a lack of accessible software support to raise cybersecurity alerts (Inan et al., 2016). While there is clear evidence of technology reinforcing social inequality, technological advances also present a world of opportunities for disabled people to break down the barriers that limit their interaction with mainstream society (Dobransky and Hargittai, 2016). The increasing availability of online shopping opportunities, social media platforms and free-to-use videoconferencing and meeting platforms are just a few examples, with the COVID-19 pandemic accelerating the growth of these digital opportunities. Furthermore, the rise of online communities can break down social isolation by providing opportunities for disabled people to freely engage with others around any particular interest or concern that they have. However, these benefts can be fully realised only if ICT interfaces and websites are fully accessible, and this is rarely the case. An accessibility audit of 100 leading websites from 20 countries, from both the North and the South, found that most did not meet international accessibility standards, with the majority of them requiring signifcant work to achieve this (Nomensa, 2006). The audit report noted that one of the most common issues identifed was the widespread lack of alternative text descriptions for images, a simple accessibility standard that requires virtually no cost to implement. The need to achieve universal access to ICT, to bridge the digital divide, is refected in the 2030 Agenda for Sustainable Development, which called on nations to ‘signifcantly increase access to ICT and strive to provide universal and afordable access to the Internet in least developed countries by 2020’ (UN, 2015, Target 9c). The digital divide arises not only through unequal access to ICT, however, but also due to diferences in the extent to which people are able to make use of ICT (Garcia, 2016). For many disabled people, especially those who have missed out on schooling, digital illiteracy represents a signifcant barrier to ICT use (UNDESA, 2018). The need to address digital illiteracy was recognised in the Geneva Plan of Action (WSIS, 2003b), formulated at the 2003 Geneva Summit, which called on governments to ensure that young people are equipped with the knowledge and skills to use ICTs, including the capacity to analyse and treat information in

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creative and innovative ways, share their expertise and participate fully in the Information Society. (Paragraph 11d) A follow-up report focusing specifcally on disability (WSIS, 2013), produced ten years after the Geneva Summit, encouraged governments to provide incentives for community-based institutions to train disabled people in the use of ICTs. The report credited the actions arising from the Geneva Summit (as well as the second phase of the Summit which took place in Tunis in 2005), as the frst global acknowledgement by UN member States of the need to ensure that persons with disabilities can access ICTs in order to fully participate in society, have complete access to knowledge and services based on digital technologies, whether education, employment, e-government or leisure. (p. 7) However, the report goes on to acknowledge that the implementation of policies and programs to facilitate access to ICTs for disabled people lags far behind the rapid progress made in terms of increasing the coverage of ICT infrastructure, especially in LMICs. Standards and benchmarking Various standards and benchmarking tools have been developed to provide a means of comparing and measuring progress in making ICT accessible and inclusive. One such initiative is the Digital Accessibility Rights Index (DARE Index), a benchmarking tool established by the Global Initiative for Inclusive ICTs (G3ict). This tool is designed to enable a wide range of government and non-government stakeholders to track progress, at country level, in meeting CRPD accessibility requirements in relation to ICT. The 2020 edition of the DARE Index, based on data collected in collaboration with Disabled People’s International (DPI) and other international and national disability organisations, documents progress in 137 countries, covering 90 per cent of the world’s population (G3ict, 2020). The Index revealed some encouraging signs of improvement in several areas, in comparison to the previous (2018) edition. For example, Web accessibility had increased by 8 per cent to 54 per cent while TV access among disabled people had increased by 10 per cent to 61 per cent, with the fastest progress being made in the East Asia and Pacifc region. Interestingly, while accessibility outcomes difered quite signifcantly between high-income and low-income countries, indicators of commitment to ICT accessibility difered less markedly, suggesting that even in countries with lower capacity levels there is signifcant commitment to improving ICT accessibility. Among the barriers to further progress identifed were a lack of DPO involvement in developing and implementing laws and policies, a lack of reference to international accessibility standards in country legislation and a lack of ICT accessibility courses within universities and professional education services.

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Another important development in this area is the establishment of the Web Content Accessibility Guidelines (WCAG), a widely recognised set of technical standards and accompanying guidelines, frst launched in 1999. The guidelines were developed by the World Wide Web Consortium (W3C), in collaboration with various other organisations, to support web content developers and evaluators in making web content more accessible to disabled people. Many countries have incorporated the WCAG into their web accessibility standards, and in some cases national laws also refer to WCAG (UNDESA, 2018). The guidelines and standards have been revised several times, gradually broadening their scope and encompassing a wider range of potential users. The basic principles underpinning the most recent edition of the WCAG guidelines are set out in Box 6.4.

Box 6.4

Basic principles of WCAG 2.1

The WCAG 2.1 sets an international standard for web content accessibility. The guidelines are underpinned by four basic principles: Perceivable: • • • •

Provide text alternatives for non-text content; Provide captions and other alternatives for multimedia; Create content that can be presented in diferent ways, including by AT, without losing meaning; Make it easier for users to see and hear content. Operable:

• • • • •

Make all functionality available from a keyboard; Give readers enough time to read and use content; Do not use content that causes seizures or physical reactions; Help users navigate and fnd content; Make it easier to use inputs other than keyboards. Understandable:

• • •

Make text readable and understandable; Make content appear and operate in predictable ways; Help users avoid and correct mistakes. Robust:

•

Maximise compatibility with current and future user tools.

Source: Adapted from W3C Web Accessibility Initiative, 2018.

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Universal design in the feld of ICT UD can play an important role in improving the accessibility of ICT for all users, as recognised in the Geneva Plan of Action (WSIS, 2003b). A recent United Nations report notes that ‘implementing universal design solutions is more inclusive, afordable and often simpler than developing specialised software or hardware for persons with disabilities’ (UNDESA, 2018, p.  188). The World Report on Disability (WHO and World Bank, 2011) reinforces this point, noting that UD solutions tend to be adopted more rapidly within virtual environments than within the built environment but also cautions that, with the rapid development of ICT, UD solutions may sometimes be overlooked in favour of expensive assistive technologies, including add-on tools such as screen readers and speech-to-text programs. Even freeto-use screen readers often have accessibility limitations, such as text-based presentation, removal of visual images and loss of context (Chandrashekar, 2010). This raises the worrying prospect, particularly within the Global South, that technological advances will simply fail to reach many disabled people. UD innovations that improve the general accessibility of computer hardware and software for all users can help to overcome the digital divide, thus enabling more disabled people to fully engage with the Information Society.

Summary of key points • •

• •

• • •

Accessibility is a crucial disability issue, but accessibility improvements can also have signifcant benefts for wider society. A wide range of physical, institutional and attitudinal barriers combine to hinder accessibility and thus reinforce disability. Due to these societal barriers, disabled people are often limited to specifc zones of interaction within the environment. The CRPD views accessibility as a cross-cutting issue and a crucial factor in determining the extent to which disabled people are able to access their rights to full participation in society. The UD concept, which is about creating environments that are inclusive and accessible for all, has evolved to place a stronger emphasis on the need to take account of cultural diversity, social dignity and resource constraints, as well as individual needs and preferences. The ICF can serve as a useful tool for identifying the various environmental and personal factors that UD solutions need to take account of. Assistive technologies play a vital role in terms of both supporting disabled people to interact with the environment and adapting the environment itself to the needs of disabled people. The rapidly evolving feld of ICT is constantly presenting new opportunities for disabled people to interact with their environment. There is an urgent need to address the digital divide, however, to reduce inequality and ensure that disabled people do not miss out on these opportunities.

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Discussion questions 1) How does the CRPD view the concept of accessibility? 2) Does the CRPD’s recognition of the reasonable accommodation principle support or hinder the realisation of accessibility rights? Consider this question in the context of a country with which you are familiar. 3) How does universal design difer from barrier-free design? 4) What actions should be taken by governments, NGOs, DPOs and private companies to reduce the digital divide?

Suggested further reading Garcia, E. (2016) ‘Assistive Technology and Disability’. In Iriarte, E., McConkey, R. and Gilligan, R. (Eds.) Disability and Human Rights: Global Perspectives. London: Palgrave, 173–188. Gibson, B., Secker, B., Rolfe, D., Wagner, F., Parke, B. and Mistry, B. (2012) ‘Disability and dignity-enabling home environments’. In Social Science & Medicine 74: 211–219. Jackson, M. (2018) ‘Models of disability and human rights: Informing the improvement of built environment accessibility for people with disability at neighborhood scale?’ In Laws 7: 10.

Notes 1 2 3 4 5

The Social Model of Disability is further discussed in Chapter 2. See Chapter 3 for further discussion around negative attitudes and beliefs. See Suggested further reading. See Chapter 5 for further discussion on the independent living movement. See Chapter 2 for a full explanation of the ICF.

References Barnes, C. (1991) Disabled People in Britain and Discrimination: A Case for Antidiscrimination Legislation. London: Hurst & Co. Berman-Bieler, R. (2010) ‘Inclusive Development: Paving the Way as We Walk’. In Barron, T. and Ncube, J. (Eds.) Poverty and Disability. London: Leonard Cheshire Disability, 373–402. Boys, J. (2017) ‘Introduction’. In Boys, J. (Ed.) Disability, Space and Architecture: A Reader. Abingdon, Oxon: Routledge, 1–5. Castell, L. (2008) ‘Adapting building design to access by individuals with intellectual disability’. In Australian Journal of Construction, Economics and Building 8(1): 11–12. Center for Universal Design (1997) The Principles of Universal Design. Raleigh: North Carolina State University. Retrieved on 21 February  2021 from https:// projects.ncsu.edu/ncsu/design/cud/about_ud/udprinciplestext.htm Chandrashekar, S. (2010). Is Hearing Believing? Perception of Online Information Credibility by Screen Reader Users Who Are Blind or Visually Impaired (Doctoral

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dissertation), University of Toronto. Retrieved on 28 June 2021 from http://hdl. handle.net/1807/26157 Dobransky, K. and Hargittai, E. (2016) ‘Unrealised potential: Exploring the digital divide’. In Poetics 15: 18–28. European Institute for Design and Disability (EIDD) (2004) Stockholm Declaration. Retrieved from www.designforalleurope.org/upload/design%20for%20all/ sthlm%20declaration/stockholm%20declaration_english.pdf Feather, J. (2018) The Information Society: A Study of Continuity and Change (6th Edition). London: Facet Publishing. Garcia, E. (2016) ‘Assistive Technology and Disability’. In Iriarte, E., McConkey, R. and Gilligan, R. (Eds.) Disability and Human Rights: Global Perspectives. London: Palgrave, 173–188. Global Initiative for Inclusive ICTs (G3ict) (2020) DARE Index 2020: Global Progress in Digital Accessibility Implementation by CRPD State Parties. Retrieved on 1 July 2021 from https://g3ict.org/publication/dare-index-2020-global-progress-bycrpd-states-parties Hamrai, A. (2016) ‘Universal design and the problem of post-disability ideology’. In The Journal of Disability Studies Forum 8(3): 285–309. Harris, A. and Enfeld, S. (2003) Disability, Equality and Human Rights: A Training Manual for Development and Humanitarian Organisations. Oxford: Oxfam Publishing. Imrie, R. (2004) ‘Disability, embodiment and the meaning of home’. In Housing Studies 19(5): 745–763. Inan, F., Namin, A., Pogrund, R. and Jones, K. (2016) ‘Internet use and cybersecurity concerns of individuals with visual impairments’. In Educational Technology and Society 19(1): 28–40. Jackson, M. (2018) ‘Models of disability and Human Rights: Informing the improvement of built environment accessibility for people with disability at neighborhood scale?’ In Laws 7: 10. Kulow, M.D. and Thomas, S. (2019) ‘Assistive technology and the Americans with Disabilities Act: Endearing employers to these reasonable accommodations’. In Berkeley Journal of Employment and Labour Law 40(2): 257–293. Lid, I.M. (2014) ‘Universal design and disability: An interdisciplinary perspective’. In Disability and Rehabilitation 36(16): 1344–1349. Lord, J. (2010) Accessibility and Human Rights Fusion in the CRPD: Assessing the Scope and Content of the Accessibility Principle and Duty under the CRPD. Presentation to the CRPD Committee for the General Day of Discussion on Accessibility in Geneva, 7 October. Lynch, M. (2016) Assistive Technology for Students with Disabilities. Retrieved on 1 July 2021 from www.thetechedvocate.org/assistive-technology-students-disabilities/ Mace, R. (1985) ‘Universal design: Barrier-free environments for everyone’. In Designers West 33(1): 147–152. Matter, R., Harniss, M., Oderud, T., Borg, J. and Eide A.H. (2017) ‘Assistive technology in resource-limited environments: A  scoping review’. In Disability and Rehabilitation: Assistive Technology 12(2): 105–115. McCallum, R. (2010) Chairman’s Opening Remarks to the CRPD Committee. General Day of Discussion on Accessibility in Geneva, 7 October. Merilainen, A. and Helaakoski, R. (2001) Transport, Poverty and Disability in Developing Countries. Washington: World Bank.

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Nomensa (2006) United Nations Global Audit of Web Accessibility. Retrieved on 1 July 2021 from www.un.org/disabilities/documents/fnomensarep.pdf Oliver, M. (1996) Understanding Disability: From Theory to Practice. Basingstoke: Macmillan. Organisation for Economic Cooperation and Development (OECD) (2001) ‘Understanding the digital divide’. OECD Digital Economy Papers, No. 49. Paris: OECD Publishing. DOI: 10.1787/236405667766. Persson, R.L., Hardie, D.J., Yngling, A.A. and Gulliksen, J. (2014) ‘Universal design, inclusive design, accessible design, design for all: Diferent concepts – one goal? On the concept of accessibility – historical, methodological and philosophical approaches’. In Universal Access in the Information Society 14. DOI: 10.1007/ s10209–014–0358-z Raheja, G. (2016) Enabling Environments for the Mobility Impaired in the Rural Areas: An Inclusive Design Approach for Rural Contexts. Saarbrucken: Lambert Academic Publishing. Roberts, P. and Babinard, J. (2005) Transport Strategy to Improve Accessibility in Developing Countries. Washington: World Bank. Schulze, M. (2010) Understanding the UN Convention on the Rights of Persons with Disabilities and Optional Protocol. Handicap International. Retrieved on 30 July 2021 from www.internationaldisabilityalliance.org/sites/default/files/ documents/hi_crpd_manual2010.pdf Shakespeare, T. (2006) Disability Rights and Wrongs. London: Routledge. Steinfeld, E. and Danford, S. (2006) Universal Design and the ICF. Paper presented at the ‘Living in Our Environment, the Promise of the ICF’ conference in Vancouver, Canada, 4–5 June. Steinfeld, E., Maisel, J. and Levine, D. (2012) Universal Design: Designing Inclusive Environments. Hoboken: Wiley and Sons. UN (United Nations) (2006) Convention on the Rights of Persons with Disabilities and Optional Protocol. Washington: United Nations. UN (United Nations) (2014) General Comment No. 2. CRPD Committee, Eleventh Session. Geneva: United Nations. UN (United Nations) (2015) Transforming Our World: The 2030 Agenda for Sustainable Development. Retrieved on 21 September 2021 from www.un.org/pga/ wp-content/uploads/sites/3/2015/08/120815_outcome-document-of-Summit-foradoption-of-the-post-2015-development-agenda.pdf UN (United Nations) (2017) New Urban Agenda. Adopted at the United Nations Conference on Housing and Sustainable Urban Development (Habitat III) in Quito, Equador on 20 October 2016. New York: United Nations. UNDESA (United Nations Department of Economic and Social Afairs) (2018) Disability and Development Report: Realising the SDGs, by and for Persons with Disabilities. New York: United Nations. US Department of Commerce (2013) Exploring the Digital Nation: America’s Emerging Online Experience. Paper prepared by National Telecommunications and Information Administration and Economic and Statistics Administration. Retrieved on 21 July 2021 from www.ntia.doc.gov/fles/ntia/publications/ exploring_the_digital_nation_-_americas_emerging_online_experience.pdf W3C Web Accessibility Initiative (2018). WCAG 2.1 at a Glance. Web Accessibility Initiative. Retrieved on 11 August  2021 from www.w3.org/WAI/ standards-guidelines/wcag/glance/

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WHO (World Health Organization) (2001) International Classifcation of Functioning, Disability and Health. Geneva: World Health Organization. WHO (World Health Organization) (2019) Global Perspectives on Assistive Technology: Proceedings of the GReAT Consultation 2019. Geneva: WHO. Retrieved on 22 October  2021 from https://apps.who.int/iris/bitstream/han dle/10665/330372/9789240000261-eng.pdf?sequence=1 WHO (World Health Organization) and World Bank (2011) World Report on Disability. Geneva: WHO. Retrieved on 22 October  2016 from http://whqlibdoc. who.int/publications/2011/9789240685215_eng.pdf WSIS (World Summit on the Information Society) (2003a) Declaration of Principles. Retrieved on 22 October  2021 from www.itu.int/net/wsis/docs/geneva/ofcial/ dop.html WSIS (World Summit on the Information Society) (2003b) Geneva Plan of Action. Retrieved on 22 October  2021 from www.itu.int/net/wsis/docs/geneva/ofcial/ poa.html WSIS (World Summit on the Information Society) (2013) WSIS + 10: Review and Strategic Directions for Building inclusive Knowledge Societies for persons with Disabilities. Paris: UNESCO.

7

Disability, health and rehabilitation

Disabled people have a basic right, enshrined within the CRPD, to access appropriate health and rehabilitation services. Meeting the health and rehabilitation needs of disabled people is a vital step towards supporting their participation in education, employment and all other aspects of community life, and is thus essential to the fulflment of economic and social rights in general (Shakespeare et al., 2018). The importance of health and rehabilitation is further underlined by the 2030 Agenda for Sustainable Development, in particular Sustainable Development Goal 3, to ‘ensure healthy lives and promote wellbeing for all at all ages’ (UN, 2015). This goal is accompanied by a set of targets, including to ‘achieve universal health coverage’ (Target 3.8) by 2030, a target which cannot possibly be achieved without addressing the wide range of barriers that interact with each other to hinder or even prevent access to healthcare services for many disabled people. While there is a limited body of data on the extent to which the health and rehabilitation needs of disabled people are being adequately addressed at present, the evidence that is available does suggest that they typically have greater levels of unmet health needs than the general population (UNDESA, 2018; WHO and World Bank, 2011). This chapter starts with a brief look at the CRPD, which contains separate articles on health and rehabilitation and calls for action across the four key areas of accessibility, afordability, availability and quality. This is followed by a discussion around the relationship between disability and health and how the concept of rehabilitation has evolved in recent years, partly in response to criticisms from within the disability movement. The four key areas identifed in the CRPD are then used as a framework to explore some of the main barriers to the provision of appropriate health and rehabilitation services, as well as various strategies designed to address these barriers and support disabled people to live full, active and healthy lives. The chapter then focuses on access to sexual and reproductive health (SRH) services. This is an issue that has long been neglected, largely due to the widespread prevalence of harmful

DOI: 10.4324/9781003256038-7

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myths and stereotypes around disabled people and their need for such services (WHO, 2009). Finally, the important concept of community-based rehabilitation (CBR) is explored. CBR is a term that is widely used to describe a model of rehabilitation that involves drawing on local community resources to meet the rehabilitation needs of disabled people in the broadest sense, supporting them to live full and active lives within their local communities.

Health and rehabilitation in the CRPD The CRPD places an obligation on ratifying parties to ensure that health and rehabilitation services are accessible, afordable, available and of high quality. The provisions relating to health and rehabilitation, covered in Articles 25 and 26, are summarised in Box 7.1.

Box 7.1

Health and rehabilitation in the CRPD

Article 25 calls on governments to ensure that disabled people can access the highest standards of health services, including sexual and reproductive health services, and are not excluded from health and life insurance schemes. It recognises that disability itself may be linked to specifc health needs and thus calls for early identifcation and intervention, as well as health services that reduce the risk of further disability. Also, it calls for the provision of health services that are gender-sensitive and close to people’s own communities, especially in rural areas. Finally, there is recognition of the need for training and awareness raising to ensure that health professionals understand the needs of disabled people and adopt an ethical- and rights-based approach towards them. Article 26 underlines the importance of rehabilitation services in enabling disabled people to maximise their independence and participate in society as fully as possible. It calls on governments to ensure the non-discriminatory provision of rehabilitation services in health, employment, education and social services. This Article stresses that rehabilitation services should be voluntary, tailored to individual needs, provided at the earliest possible stage and close to people’s communities. It also recognises the need for ongoing professional training within rehabilitation services and for the awareness and use of assistive devices and technologies to be promoted.

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Disability and health

Defnition of health Health is a state of complete physical, mental and social wellbeing and not merely the absence of disease and infrmity. (WHO, 1948, p. 1)

This holistic defnition of health, which forms part of the Constitution of the WHO, recognises the physical, mental and social dimensions of health, as well as its intrinsic association with well-being. Given this broad conception of health, there are numerous factors that may have an impact on a disabled person’s health status. These include personal characteristics, such as age, gender, type and severity of impairment, past experiences, behaviour patterns and family circumstances. Also, they include a wide range of environmental infuences, such as living and working conditions, cultural beliefs and practices, the strength of community support networks and, crucially, the availability of afordable and accessible healthcare services. Disabled people are often less able to access appropriate healthcare services than the general population. Strong evidence of a close association between disability and unmet health needs was provided by the World Health Survey, a multinational household survey involving face-to-face interviews conducted across 70 countries (WHO, 2002–2004), in which disabled people reported not receiving adequate healthcare more frequently than non-disabled people across all age groups, particularly in low- and middle-income countries (LMICs). More recent survey data collected in 2016 across 37 mostly middle- and high-income countries found that disabled people were, on average, three times more likely than non-disabled people to experience unmet health needs (UNDESA, 2018). Country-specifc studies have revealed similar trends, while also highlighting some specifc unmet health needs among certain groups. In Cameroon, for example, disabled children and young people were less likely to be vaccinated than the general population while some disabled women had not received ante-natal services when needed, a problem not identifed at all among non-disabled women (Mactaggart et al., 2016). It is important not to automatically equate disability with poor health. Many disabled people are in perfectly good health, and it can be ofensive to assume otherwise. In some cultures it can be quite commonplace to refer to disabled people as ‘ill’ or ‘sick’, thus raising expectations around potential cure and reinforcing narrow medicalised approaches to supporting disabled people (Hashemi et al., 2017).1 However, there are certain health risks that are associated with disability, and there is some evidence to suggest that

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disabled people are more vulnerable to ill-health than the general population. In fact, survey data collected in 2013 across 43 countries found that 42 per cent of disabled people perceived their health as poor or very poor, as compared with 6 per cent of non-disabled people, with the gap considerably wider in LMICs (UNDESA, 2018). Health risk factors A number of health risk factors are associated with disability. Disabled people may be more likely to adhere to certain behavioural patterns, for example, as illustrated by research conducted in Rwanda involving 300 people with lower limb amputations (Amosun et al., 2005). This study found that participants were less likely to exercise and more likely to consume alcohol and recreational drugs than the general population, with negative health consequences. Disabled people may also be at greater risk of sustaining injuries due to burns, falls and accidents associated with the use of assistive devices (WHO and World Bank, 2011). They may be vulnerable to the risk of developing secondary health conditions, linked to their primary health condition or infection (Shakespeare et al., 2018). For example, people with spinal cord injuries are at greater risk of developing pressure sores or urinary tract infections (Garcia-Arguello et al., 2017). Some disabled people are also vulnerable to early ageing and thus more susceptible to health conditions that are more common in older age. For example, research has shown that people with Down syndrome over the age of 55 are far more likely to develop Alzheimer’s disease than the general over-55 population (Connolly, 2006). The association between disability and poor health is often reinforced through poverty, because poverty frequently manifests itself in experiences of deprivation and marginalisation that can result in poor health outcomes. Research conducted in Guyana (Chouinard, 2012) found that many disabled people viewed their poverty as a form of passive violence, denying them access to basic necessities, such as food, and causing harm to their physical and emotional well-being. Poor health or unmet health needs can in turn reinforce poverty among disabled people by limiting the extent to which they are able to fully participate within their communities. In South Africa, for example, national surveys have shown that disabled people were signifcantly more likely to identify health issues as the reason for them dropping out of employment than non-disabled respondents (Graham et al., 2014). Exposure to violence and abuse The increased exposure of disabled people to the risk of violence and abuse is another commonly identifed health risk factor. A global systematic review of primary research studies conducted between 1990 and 2010 found that disabled adults experienced higher levels of physical, sexual and intimate partner violence than non-disabled adults, with the greatest levels of risk

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experienced by those with intellectual impairments and mental illnesses (Hughes et al., 2012). As the authors acknowledge, the studies identifed for this review were largely focused on high-income countries, due to a lack of available studies from LMICs that met the review criteria, and also tended to exclude those living in institutions, where vulnerability to the risk of violence and abuse is known to be high. Moreover, research that has been conducted in the Global South provides strong evidence of increased exposure to the risk of violence and abuse among disabled people, especially for women and girls. For example, a study conducted by Human Rights Watch (HRW, 2010) found that disabled women living in confict-torn Northern Uganda frequently face physical and sexual violence, as well as isolation, neglect and other forms of abuse. A  wider study conducted by the Africa Child Policy Forum (ACPF, 2010), covering Cameroon, Ethiopia, Senegal, Uganda and Zambia, involved nearly 1,000 young disabled people who were asked to share their childhood experiences of violence. A staggering fnding from this study was that every single participant had sufered at least one episode of emotional or sexual abuse, with 81.5 per cent having experienced at least one episode of physical violence. An extremely high prevalence of sexual violence was also reported, ‘ranging from 1.9 counts of sexual violence per child in Senegal to 3.9 counts per child in Cameroon, where 52% of the sample had been raped, 30% forced into prostitution and 43% touched indecently’ (p. VI). Evidence emerging on the impact of COVID-19 suggests that the vulnerability of disabled people to violence and abuse may have increased signifcantly since the outbreak of the pandemic, largely due to the impact of lockdown measures and withdrawal of support services. A  global survey conducted by the COVID-19 Disability Rights Monitor (COVID-19 DRM, 2020) gathered several testimonies from disabled people and their representative organisations suggesting ‘a dramatic increase in gender-based violence against women and girls with disabilities including rape, sexual assault, and harassment at the hands of enforcement authorities or family members’ (p. 11).2

Disability and rehabilitation Historically, rehabilitation services have been rooted in the medical model, which views disability as arising from impairment and thus underlines the importance of medical solutions to the problems associated with disability. The resulting practices have sometimes involved considerable pressure being placed on disabled people (often children) to undergo intensive physical therapy to achieve relatively minimal improvements in bodily functioning, often within a segregated environment away from their homes and communities. This has led to much criticism from within the disability movement, with Oliver (1996) describing many traditional rehabilitation practices as ‘oppressive to disabled people and an abuse of their human rights’ (p. 107).

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In more recent times, the term ‘rehabilitation’ has broadened to cover a wide range of responses to disability, from medical interventions designed to improve body function and independence to more comprehensive community-based strategies, designed to increase activity levels and promote fuller participation within society. Rehabilitation strategies may thus cover areas such as health, communication, mobility, self-care, education, employment, recreational activities, social interaction and quality of life. A simple defnition of rehabilitation, refecting this evolution in our understanding of the term, can be found in the World Report on Disability:

Defnition of rehabilitation [A] set of measures that assist individuals who experience, or are likely to experience, disability to achieve and maintain optimal functioning in interaction with their environments. (WHO and World Bank, 2011, p. 96)

This broad defnition encompasses rehabilitation measures that are designed to improve bodily functioning and support disabled people to carry out various everyday activities, such as reading, writing or climbing the stairs, as well as strategies designed to promote societal participation and empower disabled people to achieve their wider aspirations in life. This refects a rights-based perspective on rehabilitation, in which disabled people are viewed as potential contributors to society rather than as a burden to society. However, the persistence of a charity model outlook in many countries (Lang et al., 2011), often reinforced by non-governmental organisations (NGOs) that use degrading images of disabled people looking weak and helpless to raise funds, can be a hindrance to the adoption of rehabilitation strategies that are designed to promote inclusion and empowerment. Disabled people themselves should be viewed as key decision-makers within the rehabilitation process. They should be supported to identify their own priorities and objectives, so that strategies are designed to enable them to achieve their aspirations and empower them to take control of their own lives. Family members may also be able to make a valuable contribution to the assessment of rehabilitation needs and implementation of associated strategies, given the crucial role that they often play in providing care and support (McConkey, 2007). Rehabilitation and the ICF The WHO’s (2001) International Classifcation of Functioning, Disability and Health (ICF)3 provides a useful conceptual framework for viewing the

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range of rehabilitation needs that a disabled person may have and systematically identifying corresponding goals, while recognising the various facilitating factors and disabling barriers that may impact on the achievement of those goals. A rehabilitation programme based on the ICF would focus not just on a person’s medical condition but also on the activities that he or she is able to carry out and aspects of the physical and social environment that may potentially be adapted to increase his or her participation in society (Shakespeare, 2014). Case Study 7.1 illustrates the use of the ICF as a basis for a rehabilitation assessment. Rehabilitation processes are becoming increasingly multidisciplinary and multi-sectoral, often involving the employment, education and social welfare sectors as well as the health sector. The ICF provides a conceptual basis

Case Study 7.1: Using the ICF to guide a rehabilitation assessment The value of the ICF as a framework to support holistic rehabilitation assessment is demonstrated in the case of a 13-year-old girl, named ‘Michelle’, from Burkina Faso. Michelle had meningitis when she was younger, resulting in a right hemiplegia, which causes stiffness and lack of control in the right side of the body. While she is able to carry out most everyday activities with ease, her parents had withdrawn her from school due to concerns over bullying, partly attributed to impairment-related differences in her appearance and movement, and consequently, she had not learned to read or write. Michelle enjoys household tasks and has aspirations to become a housemaid in the future, but her fear of bullying could discourage her from accessing community services, such as healthcare services and vocational training centres, while her illiteracy could limit her awareness of job opportunities. Rather than focusing entirely on Michelle’s medical needs and physical abilities, an ICF-guided assessment of Michelle’s rehabilitation needs would thus identify factors such as social stigma, illiteracy and inaccessible service provision, within the education and employment sectors as well as the health sector, as potential barriers to the fulflment of her aspirations. Resulting strategies might include, for example, confdence building, support to develop literacy skills and awareness-raising initiatives designed to reduce stigma within the local community. Source: Adapted from MacLachlan et al. (2016).

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for a comprehensive rehabilitation assessment while also facilitating the use of a common language for describing disability in terms of human functioning,4 thus promoting consistency and coordination among professionals working in diferent areas (Steiner et al., 2002). Moreover, the use of this common language has the potential to enhance the international comparability of rehabilitation data, which is currently limited due to difering defnitions of rehabilitation and varying perceptions of disability, as well as difering approaches to measuring disability (WHO and World Bank, 2011).

Barriers to health and rehabilitation As noted at the beginning of this chapter, the CRPD identifes accessibility, afordability, availability and quality as four key factors that are crucial to ensuring that disabled people are able to access appropriate health and rehabilitation services. This section examines some of the barriers that exist in each of these areas, as well as various strategies that could potentially help to overcome them. Accessibility Physical access barriers may relate to buildings where health and rehabilitation services are provided or to the equipment housed within them. Even if a building can be easily entered, it might be difcult to navigate for some disabled people, especially those with sensory or intellectual impairments, and some parts of the building may be less accessible than others. The problem of accessibility was highlighted by a study on architectural barriers in basic healthcare units covering 41 Brazilian cities, revealing that 60 per cent of the units did not allow adequate access to those with functional limitations (Siqueira et al., 2009). To make health and rehabilitation facilities fully accessible, it is necessary to ensure that disabled people can reach them, enter them, and make full use of them. This can best be achieved in the longer term by taking account of the needs of disabled people when designing new health infrastructure projects. In the shorter term, however, alterations to buildings and equipment are often necessary to ensure that existing facilities are as accessible as possible. A lack of accessible transport can also restrict access to services. An analysis of national survey data from Chile found that disabled people were three times more likely to face difculties in arriving at a health facility than non-disabled people (Rotarou and Sakellariou, 2017). Communication barriers frequently reduce the accessibility of health and rehabilitation services. A lack of appropriate signage, for example, may disadvantage people with visual impairments, while sign language interpreters may not be available to support those with hearing impairments. People with intellectual impairments or mental health conditions are sometimes

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denied the additional consultation time that they may require due to work pressures within mainstream services (McConkey, 2007). The high prevalence of communication barriers was illustrated by a quantitative study in South Africa, based on interviews conducted with 151 disabled people living in a deprived area of Cape Town, in which 48.3 per cent of respondents identifed communication or language barriers as a problem when accessing health and rehabilitation services (Maart and Jelsma, 2014). The use of appropriate communication methods, taking account of impairment-based needs, is thus vital to the delivery of fully accessible health and rehabilitation services. Improving accessibility Appropriate technology5 can play an important role in enhancing the accessibility of the built environment, including equipment and machinery, if it is used in a way that creates opportunities for disabled people rather than placing restrictions on them (Albert et al., 2004). The provision of appropriate assistive devices, for example, can be highly efective in empowering disabled people to live more independently and make better use of existing facilities. Manufacturing devices locally, using local materials, can save money, provide local employment opportunities and help to ensure that devices are appropriate to local conditions. The Association for the Physically Disabled of Kenya (APDK) has demonstrated this by employing disabled people to produce high-quality wheelchairs, tricycles and walking devices, specially designed to cope with the African terrain, at its Kabete Wheelchair Workshop in Nairobi (Cobley, 2012). Where disabled people have difculty in reaching health and rehabilitation facilities, alternative models of service delivery may provide a solution. The World Report on Disability (WHO and World Bank, 2011) calls for the increased use of emerging information and communication technologies (ICTs), such as remote mobility assessments using teleconferencing equipment, to improve the accessibility and efciency of health and rehabilitation services while also supporting disabled people to better manage their own conditions. Hospital or clinic-based services can be moved into communities to integrate services and relocate equipment to where it is most needed. This would hopefully reduce patient waiting times and travelling distances, thus also addressing cost barriers, but may not be suffcient to ensure easy access for all. Research conducted by Hunt (2011), within an impoverished shanty town on the outskirts of Lima, revealed that disabled people were often unable to reach local rehabilitation clinics on foot due to the rough and steep terrain and were usually too poor to be able to hire motorised transportation. She proposed the setting up of a mobile rehabilitation service, which would operate from diferent community buildings (making use of churches or soup kitchens, for example) on diferent days, thus ensuring that most disabled people living within the

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community would be within relatively easy reach of services on at least one day of the week. Afordability Cost barriers reinforce poverty and frequently prevent or deter disabled people from accessing health and rehabilitation services. A large-scale population sample, conducted across South Africa, Namibia, Malawi and Sudan, identifed both the cost of visiting health facilities and the cost of transport as among the most signifcant barriers to accessing healthcare (Eide et al., 2015). This is consistent with the fndings of a study based on rural village surveys conducted in the Indian States of Uttar Pradesh and Tamil Nadu (World Bank, 2009). The study report identifed cost, distance and inadequate transportation as the top three barriers to accessing health services and also noted that many disabled people usually had to pay for their own assistive devices. Grech’s (2008) study on disability and poverty in a rural district of Guatemala found that there was widespread mistrust in doctors among disabled people, largely due to the high fees that they tend to charge. In China, high healthcare costs associated with the privatisation of healthcare have tended to deepen poverty within households with disabled family members (Sagli et al., 2013). Addressing cost barriers Reducing, removing or subsidising the fees charged by service providers is one obvious way of reducing fnancial hardship and encouraging disabled people to access services. The 2010 World Health Report (WHO, 2010a) supports this approach, claiming that full access to healthcare services will be achieved only when governments cover the costs of healthcare for disabled people who cannot aford to pay. Cash transfers provide a less direct means of overcoming the cost barriers associated with health and rehabilitation services. Many countries provide cash transfers (or income support) to poor people, and some target these at households with a disabled member, or directly at disabled people, in recognition of the additional costs and barriers that they face. This increases their disposable income, which they can use according to their own priorities. There has been a recent growth in conditional cash transfer schemes, where the receipt of cash benefts is conditional on participation in, for example, a healthcare programme. Evaluations of such schemes in several Latin American countries indicate that many of them have been quite successful in terms of extending the coverage of both education and preventive health services (Fiszbein and Schady, 2009). However, removing cost barriers through fee subsidies or conditional cash transfer schemes is only part of the solution. Such schemes can work efectively for disabled people only if accessible and inclusive services are locally available (Palmer, 2013; Mont, 2010).

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Pro-poor health insurance schemes provide a means of protecting poor people from the impact of health and rehabilitation costs in the event of sudden shocks, such as illness or accidents. Such schemes are likely to be of particular beneft to disabled people, given their disproportionate representation among the poor. Sagli et al. (2013) examined the impact of one such scheme in China, implemented by the government in 2003 with the aim of reducing household poverty in rural areas. The scheme covered only certain healthcare costs, however, and payments were made on the basis of reimbursement, which meant that very poor households often had to borrow to aford the upfront costs. Another drawback of the scheme was that reimbursement rates were lower for outpatient expenses, which meant that those with long-term or recurring health issues not requiring hospital admission were disadvantaged. The researchers concluded that, while many of the study participants expressed satisfaction with the scheme, its impact in terms of breaking the cycle of poverty and disability had been rather limited. Availability The poorest countries of the world bear the heaviest burdens of disease and injury, yet have the fewest resources to cope with them (Gottret and Schieber, 2006). As a result, the supply of health infrastructure in many countries of the Global South is woefully inadequate, with few services universally available (WHO, 2010a). Survey evidence gathered from 707 disabled respondents in Guatemala showed that only 4 per cent of them had ever received specialist health services and 3.4 per cent has received medical rehabilitation (ICED, 2017). Of those who reported actually needing these services, 43 per cent had received medical rehabilitation through CBR programmes and 70 per cent had received specialist health services. Services are often constrained due to a lack of skilled personnel. It has been estimated that ‘more than 75 per cent of developing countries have no prosthetics and orthotics training programmes, which leads to a poor coverage of prosthetics and orthotics services’ (WHO, 2005, p. 8). In Malawi, health clinics in poorer areas experience high staf turnover and often lack essential equipment and medicines (Ingstad et al., 2012). In South Africa, rehabilitation services are constrained by a lack of assistive devices, consumables and human resources in health facilities (Magaqa et al., 2021). A related problem afecting availability is that services are often located far from people’s homes, especially for those living in rural areas. In Brazil, for example, basic therapeutic services are not available in many rural areas (Siqueira et al., 2009), while household surveys in the Indian States of Tamil Nadu and Uttar Pradesh (World Bank, 2009) revealed that over half of the respondents had reported that there were no healthcare facilities in their local area. The Indian surveys also revealed that a similar number of respondents were unaware of India’s disability certifcation process, which disabled people must complete to access health treatment and rehabilitation services.

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Improving coverage The World Report on Disability (WHO and World Bank, 2011) calls for the expansion of educational and training programmes to improve the supply of health and rehabilitation professionals. The report notes that several LMICs, including China, India, Thailand, Myanmar, Vietnam, Lebanon and Zimbabwe, have responded to a chronic lack of rehabilitation workers by introducing ‘mid-level’ training programmes. These short programmes provide basic training across various disciplines, such as physiotherapy, occupational therapy and speech therapy, providing a means of extending the coverage of basic rehabilitation services where there is a lack of fully qualifed professional staf. The Report notes that while this approach may potentially compromise services in terms of quality, it could be viable as an interim measure where there are temporary shortages of fully trained staf (as in many post-confict settings) or as part of a service model where those in receipt of mid-level training work under the supervision of fully trained staf. Another way of increasing the coverage of health and rehabilitation services is to develop specialist interventions, designed to fll in the gaps within mainstream provision. Targeted health promotion programmes, for example, can have a positive impact on knowledge, behaviour and lifestyle patterns among disabled people, thus reducing the occurrence of secondary conditions, empowering disabled people to manage their own health more efectively, reducing medical costs and increasing community participation (Rimmer and Rowland, 2008). Such interventions may be specifcally targeted at those who are particularly difcult to reach, such as people with mental health conditions and intellectual impairments, or at certain age groups, thus helping to reduce inequalities in healthcare provision. One such intervention, designed to raise awareness of issues around HIV/AIDS among young disabled people in Africa, is described in Case Study 7.2.

Case Study 7.2: Preventing HIV/AIDS among young people with disabilities in Africa In 1999, the international network Rehabilitation International began an HIV/AIDS project in Mozambique and the United Republic of Tanzania to promote the African Decade of Persons with Disabilities and to provide HIV/AIDS leadership and training. The non-governmental organisations Miracles in Mozambique, the Disabled Organisation for Legal Affairs and (continued)

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Social Economic Development in the United Republic of Tanzania were local partners in the project, with support by the Swedish International Development Agency. A baseline survey, carried out with 175 disabled people aged 12–30, revealed that knowledge about HIV/AIDS was low; there was a lack of health information available in accessible formats; and health facilities were also often inaccessible. The project developed educational materials on HIV/AIDS issues and rights for youths and young adults with disabilities, as well as for outreach workers and peer educators working with this group. The materials included manuals in accessible formats, such as braille, and a DVD with sign language. Project materials were widely disseminated to HIV/AIDS and disability organisations. Four training workshops, delivered in Kiswahili and Portuguese to 287 participants, were later expanded to include people with disabilities in rural areas of Mozambique. Some participants trained to serve locally as HIV/AIDS educators. At the same time, a wideranging campaign used mass media, the internet and seminars involving representatives of governments and non-governmental organisations to educate the public. At the conclusion of the project, it was recommended that disability issues should be mainstreamed within HIV/AIDS educational programmes. The participatory and inclusive approach proved effective in training young people with disabilities as well as peer educators and outreach workers. Source: Rehabilitation International, 2007, cited in WHO and World Bank, 2011, p. 74.

Quality Disabled people often receive poor or inappropriate services due to a lack of disability awareness and negative or discriminatory attitudes within health services. During the COVID-19 pandemic, for example, disabled people reportedly experienced discriminatory triage procedures and were sometimes even denied access to life-saving treatment on the basis of disability (COVID-19 DRM, 2020).6 The way that disability is understood by health sector providers can have a critical impact on the types of assistance and treatment that disabled people receive (Shakespeare, 2014). A qualitative study in Malawi revealed that, while qualifed health service professionals generally attributed disability to medical causes, they were often supported by community health workers with less education and

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training who had not divorced themselves from spiritual or traditional perceptions, such as the belief that disability was sometimes associated with witchcraft (Braathen et al., 2015). This study highlighted one particular case where such perceptions had been internalised by a disabled person, as well as her family, leading her to lose hope of ever leading a meaningful life. In South Africa, research based on qualitative interviews with disabled people found that all ten participants had experienced stigma and negative perceptions as a barrier to health and rehabilitation (Hussey et al., 2017).7 In this study, attitudinal barriers were identifed as the central, underlying barrier, giving rise to a range of other barriers such as insufcient resource allocation and a lack of disability awareness among political leaders. It should be noted that misconceptions about disability and disabled people are present even in high-income countries, as highlighted by the following quotation from a disabled person’s advocate who participated in a focus group discussion in Massachusetts, United States.

Misunderstandings of disability within health services We hear frequently that people are terrifed of going to the ER [emergency room], because their disabilities are misunderstood. People don’t take the time to understand them and what they need. They’re afraid of leaving the ER in worse shape than when they came in. (Drainoni et al., 2006)

Raising standards There is clearly a need to sensitise those who provide health and rehabilitation services to ensure that disabled people are treated respectfully and receive appropriate treatment and support. Sensitisation can raise awareness of both the social and medical causes of disability, promote positive, non-discriminatory attitudes and help to develop the necessary skills and knowledge to ensure that services are able to meet the specifc needs of disabled people. This will not be achieved, however, through the expansion of professional training programmes that simply focus on building medical knowledge and skills. Training programmes also need to raise awareness of disability as a human rights issue and take account of the various ways in which disability is reinforced through the interactions between people with impairments and the environment in which they live. Cornielje and

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Tsengu (2016) discuss this issue, noting that conventional training programmes often fail to adequately equip rehabilitation professionals with the necessary skills to work in poverty-stricken areas. In the African context, for example, they question the extent to which training programmes pay sufcient attention to the powerful infuence of the religious model8 on perceptions of disabled people, the role of traditional health remedies and the important contribution that family members can make to rehabilitation programmes. Disabled people are experts by experience and uniquely positioned to share their knowledge of disabling barriers, which they encounter on a daily basis. Also, they tend to be frequent users of healthcare services and thus, potentially, a source of valuable feedback on the quality of services. There is ample scope, therefore, for the involvement of disabled people as well as their families in the planning and delivery of services at all levels. At the policy level, resources should be set aside for the involvement of organisations that represent disabled people, on a collaborative basis, in the reform of policy and legislation (WHO and World Bank, 2011). At the local level, health providers can seek to raise the quality and inclusiveness of services by seeking the views of disabled people and their representative organisations. At the individual level, health and rehabilitation providers should aim to support disabled people to manage their own conditions more efectively and make informed decisions about their health. This may be quite a challenge, however, for professionals who have years of training and are used to making the decisions rather than assuming the role of facilitator and putting their expertise at the disposal of others.

Refection exercise 7.1 Imagine that you work for a disability organisation in a country that you are familiar with and have been tasked with designing an advocacy campaign aimed at improving the accessibility, afordability, availability and quality of health and rehabilitation services for disabled people. Provide an outline of the main elements of your advocacy campaign, including approaches, methods of implementation and, where possible, evaluation measures.

Access to sexual and reproductive health (SRH) services SRH services cover a range of important areas such as family planning, maternal health, prevention and treatment of sexually transmitted diseases and supporting victims of gender-based violence (WHO and World Bank,

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2011). Given their heightened exposure to the risk of violence and abuse, discussed earlier in this chapter, disabled people may even have greater need for SRH services than the general population. The CRPD is the frst Convention to explicitly acknowledge the rights of disabled people to SRH services (UNDESA, 2018), thus establishing access to SRH services as an integral part of the right to health. The 2030 Agenda (UN, 2015) also addresses this topic, with Target 3.7 calling for universal access to SRH services. This is important because the SRH needs of disabled people have long been neglected, largely due to ignorance and discriminatory attitudes within health services and wider society (WHO, 2009). Historically, they have frequently been denied information about SRH services and even denied the rights to establish relationships and make decisions around starting a family (ibid.). Control over their own bodies has been taken away and life-changing decisions made on their behalf. Furthermore, many have been subjected to forced sterilisations, forced abortions and forced marriages (UNFPA, 2007). In Mexico, for example, a survey of 51 women with intellectual impairments found that more than half of the respondents had been told that they should not have a child and close to half of them had been permanently sterilised (UNFPA, 2018). This survey also revealed that 43 per cent of the women had been sexually abused at the gynaecologist’s ofce and that some had even been raped by a healthcare worker. Disabled women are often portrayed as asexual or not sexually active, childlike and dependent or oversexed (Dotson et al., 2008). Harmful stereotypes such as these often result in their rights to sexual expression being ignored or suppressed and to their exclusion from SRH services (ibid.). Such beliefs can also increase the vulnerability of disabled women and girls (and even men) to the risk of violence and abuse, as illustrated by the following example.

Virgin rape While persons with disabilities have always been at risk for violence, a new specifc concern has arisen in the HIV/AIDS epidemic. In many countries there is a common folk belief that, if someone with HIV has sex with a virgin, the virus will be transferred from the infected person to the virgin. The practice, known as ‘virgin rape’, reportedly has even involved rape of infants and children. Persons with disabilities – often incorrectly assumed to be sexually inactive (hence virgins) – are also now at risk. Both men and women with disabilities, regardless of age, are at risk for ‘virgin rape’. (WHO, 2009, p. 6)

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Health professionals may buy into harmful stereotypes and make clinical decisions on the basis of invalid assumptions. In the United States, for example, the common assumption that disabled people are not sexually active sometimes deters health professionals from ofering SRH services (Drainoni et al., 2006). Research in South Africa showed that disabled women were often berated by healthcare staf who could not understand why they would need family planning services and hence were reluctant to provide advice around birth control options (Mavuso and Maharaj, 2015). Similarly, a study in the Philippines found that health service providers had limited awareness of the SRH needs of disabled women and often held prejudiced views of them, referring to them as ‘defcient’, ‘broken’ and ‘inadequate’ (Lee et al., 2015). This study also found that the SRH rights of disabled women were often linked to marital status. For example, one nurse expressed the opinion that ‘they need medical health service but regarding family planning services, they wouldn’t really get married except if they are abused and get pregnant’ (p. 5). During focus group discussions, only one respondent acknowledged that disabled women were just as likely to have sexual desires and experiences as non-disabled women and thus had the same need for SRH services. In summary, the rights of disabled people, especially women, to access SRH services are frequently denied, and even if they do manage to access services they are often treated with a lack of dignity and respect. This is largely because the general barriers to health and rehabilitation services, discussed in the previous section, are compounded by a range of harmful stereotypes, prejudices and beliefs that greatly impede the provision of disability-inclusive SRH services. To address these concerns, there is a need to challenge negative attitudes and beliefs, especially the stereotypical views that disabled people are sexually inactive and incapable of looking after children. In fact, there is a growing body of evidence to suggest that disabled people are just as sexually active as their peers and have similar needs around family planning (UNDESA, 2018). Thus, there is an urgent need to raise awareness of the SRH needs and rights of disabled people within their communities and especially within healthcare services.

Community-based rehabilitation (CBR) CBR is an umbrella term describing decentralised rehabilitation strategies that aim to harness the potential of local communities to support the inclusion and empowerment of disabled people and their families, especially those living in the Global South. This is a powerful alternative to the traditional model of providing rehabilitation services within institutionalised settings. The extent of this community potential was recognised in a document produced by the International Disability and Development Consortium (IDDC, 2004), which boldly stated that

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80 per cent of (the) information, skills, resources that disabled persons need to enable them to fully participate and access their rights can be met within their local communities. (p. 4) The CBR concept has gradually evolved over the past half-century, from focusing quite narrowly on increasing the provision of primary healthcare and basic medical rehabilitation services to encompassing a wide range of approaches designed to empower disabled people and promote their full inclusion in society (WHO, 2010b). This broader vision of inclusive community development is captured by the defnition provided in the frst iteration of a Joint Position Paper on CBR produced by three UN agencies.

Defnition of CBR CBR is a strategy within general community development for rehabilitation, equalization of opportunities and social inclusion of all children and adults with disabilities. CBR is implemented through the combined eforts of people with disabilities themselves, their families and communities, and the appropriate health, education, vocational and social services. (ILO, UNESCO, and WHO, 1994, p. 1)

This defnition presents CBR as a multi-sectoral approach, recognising that each disabled person has a varied set of needs and aspirations that may require support from diferent sectors. Another signifcant aspect of the defnition is the emphasis on CBR as a strategy within community development, which implies that CBR programmes should be sensitive to the local context, taking account of social, cultural, economic and political conditions and encouraging the genuine participation of a wide range of community stakeholders, including disabled people themselves. Figure 7.1 highlights various stakeholder linkages that could potentially form part of a CBR initiative. The main objective of CBR is to empower disabled people to take control of their own lives and access their rights to full participation, with the support of motivated community workers, or ‘CBR workers’, who provide them with information and advocate for their inclusion (ILO, UNESCO, and WHO, 2004). The CBR workers support disabled people and their families to develop individual rehabilitation plans and help them to navigate the various services available. They are usually part of the community themselves and have a good understanding of local traditions and customs, which puts them in a strong position to gain the trust of disabled people and

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Disabled people and families

CBR workers

DPOs

Schools and colleges Nurseries and playgroups Voca˜onal training centres Government agencies

Hospitals and health centres

Employers

NGOs and community organisa˜ons

Financial ins˜tu˜ons Legal ins˜tu˜ons

Figure 7.1 CBR stakeholder linkages

their families. This enables them to play a key role in the CBR process, as Figure 7.1 illustrates, by facilitating linkages between disabled people and the various community stakeholders that can potentially contribute to the achievement of rehabilitation objectives. Figure 7.1 also highlights the important role that DPOs can play within a CBR programme. With their knowledge of the local disability community, DPOs are often well placed to make initial contact with disabled people and their families and may also have well-established links with a wide range of community stakeholders (Young et al., 2016). The latest revision of the Joint Position Paper (ILO, UNESCO, and WHO, 2004) recognises this and calls for the participation of DPOs in both the planning and the implementation of CBR programmes. The CBR model has been adopted in more than 90 countries around the world and has increasingly come to be regarded as an appropriate

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mechanism for promoting rights and opportunities for disabled people (WHO and World Bank, 2011). Further extending its reach is among the objectives that were identifed in the WHO Global Disability Action Plan 2014–2021, which recognised the growing potential of CBR to empower disabled people and their families, especially those living in the Global South, and enable them to become active contributors to their communities (WHO, 2015). The CBR matrix The CBR matrix, shown in Figure 7.2, frst appeared within a detailed set of CBR guidelines produced by the WHO (WHO, 2010b). This matrix displays the potential range and depth that is possible within a comprehensive, multi-sectoral CBR programme. There are fve major components (health, education, livelihood, social and empowerment), each of which is split into fve elements, and the CBR guidelines deal with each of these components in separate chapters. The matrix thus provides a basic framework covering

Community-based rehabilita on (CBR) Health

Educa˜on

Livelihood

Social

Empowerment

Promo˜on

Early childhood development

Skills development

Personal assistance

Social mobilisa˜on

Preven˜on

Non-formal

Selfdevelopment

Rela˜onship marriage and family

Poli˜cal par˜cipa˜on

Medical care

Formal including primary

Waged employment

Culture religion and arts

Language and communic a˜on

Sports recrea˜on and leisure

Self-help groups

Access to jus˜ce

DPOs

Rehab

Assis˜ve devices

Secondary and higher

Financial services

Lifelong learning

Social protec˜on

Figure 7.2 The CBR matrix Source: Adapted from WHO, 2010b, p. 25.

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the various aspects that a CBR programme may seek to address. This does not mean that a CBR programme will intervene across all of these areas because each programme is unique and will be infuenced by a wide range of local contextual factors, as well as resource constraints. Some CBR initiatives may have a strong focus on certain areas identifed in the matrix while paying less attention to others. Case Study 7.3 describes a CBR initiative in Kenya that has a very broad scope, addressing all fve major components of the matrix.

Case Study 7.3: The Meru North District Disability Centre This case study examines a multidisciplinary CBR programme aimed at promoting the empowerment and inclusion of disabled people across the vast rural district of Meru North, in Kenya’s Eastern Province. The scheme, which began in 1996, provides a range of home- and community-based services, including vocational training and medical rehabilitation, as well as forming and strengthening DPOs within the district. Another primary objective is to promote disability rights through institutional and community awareness-raising, as well as providing information to disabled people on how to access specialist and mainstream services. This latter objective was very much in evidence at two DPO meetings that I  attended with the scheme’s social worker, who repeatedly challenged members not to ‘limit their aspirations’ and encouraged them to take advantage of the services that were locally available. Family members present were also encouraged to air their concerns and participate in group decision-making. At one of the meetings, held in the open-air at the local chief’s compound in the village of Machungulu, a special education teacher from a nearby school made an impassioned plea to the parents present to ‘be at the forefront of promoting disability rights’ and to take advantage of the special unit at the school. She emphasised the potential skills that an education can develop and illustrated her point by asking one of her pupils, an eight-year-old child with paralysed hands who had accompanied her to the meeting, to sign his name on my notepad by gripping a pen between his toes. Several group members present raised the issue of assistive devices, and some members, it was reported, had been unable to attend due to a lack of wheelchairs, braces or boots. In response to this, the DPO Chairman was asked to provide a list of all those in need of assistive devices, including artifcial limbs, so

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that proper assessments could be carried out and arrangements made for appropriate aids to be supplied as necessary. At the time of research, the scheme was providing loans to 60 DPOs, ranging in size from 15 to over 200 members. Most were running group income-generating projects, such as dairy goat farming or charcoal production, as well as supporting members in their own business enterprises. Eight of the groups had built up suffcient capital to access mainstream fnancial institutions. One issue recently identifed, however, was that some of the poorest disabled people were excluded from joining DPOs, as they could not afford the weekly membership fee of 20 Kenyan shillings (Ksh).To address this problem, groups had been encouraged to introduce multiple levels of membership, to allow for those who could afford to pay only 10Ksh or even 5Ksh per week. Each level within the group had its own secretary to keep records of member shares, loan disbursements and repayments. According to the social worker, this innovative approach had enabled the scheme to empower some of the very poorest people in the community. To maintain contact with such a large number of people, many of whom live in isolated rural communities, the project relied on an extensive network of trained disability support volunteers who reported back to professional staff at weekly staff meetings, held at the District Disability Centre in the town of Meru. At one of these meetings, at which I  was present as an observer, several of the volunteers raised issues relating to the individual households to which they were attached, such as the reluctance of a parent to send their disabled child to school or the identifcation of a disabled person in need of vocational training, an assistive device or professional counselling. In each case, specifc action was agreed on to address the identifed need. Whenever it was felt that an issue could not be addressed within the programme, arrangements were made to make a referral to local government authorities or other partner organisations within the district. This scheme appears to have achieved signifcant success in terms of addressing a wide range of disability issues and supporting disabled people across a vast rural area, including some who were so poor that they would normally be excluded from joining DPOs. It was interesting to note that high priority was given to medical rehabilitation. One of the scheme’s medical specialists summed up the programme’s holistic approach by asserting that ‘economic empowerment aspirations cannot be achieved unless an individual’s physical impairment needs are also met’. Source: Adapted from Cobley, 2012.

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Refection exercise 7.2 Use the CBR matrix (see Figure 7.2) as a framework to analyse Case Study 7.3. Based on the information provided, to what extent does the Meru North programme cover each of the fve major components of the matrix?

CBR issues and challenges Despite the rapid spread of CBR across the Global South, there have been some criticisms of the way that the concept has been understood and implemented. For example, Miles (2007) is scathing of WHO ‘experts’ who ‘foisted their experiment on the world’ (p.  12) in the 1970s and 1980s, despite having limited or no experience of living and working in low-income settings where CBR schemes were being pioneered. Weber (2014) questions the extent to which CBR processes facilitate the genuine participation of disabled people in all spheres of planning, implementation and evaluation, illustrating his argument by refecting on a regional CBR conference that took place in Columbia in 2013. The conference was dominated by academics, politicians and senior organisational representatives, with very few disabled people included on the planning committee and none whatsoever in the various panel discussions that took place. Issues around participation were also identifed in a study of CBR programmes in Zimbabwe, which found that there was very little community involvement in the design and implementation stages (Bongo et al., 2018). While community participation increased in the later stages, this was largely confned to the provision of labour and passing on of relevant information. CBR is sometimes viewed as a relatively cost-efective means of reaching out to disabled people on a wide scale and ensuring that they are able to make the best use of mainstream and specialist services that are already available locally. The approach has often been promoted as well-suited to social and economic environments that are characterised by high levels of poverty, high unemployment rates and limited social services (Metts, 2000). There is a danger, however, in presenting CBR to governments of the Global South as a low-cost approach. For CBR to work efectively, it is vital that CBR workers receive the necessary training and support to carry out their pivotal role. As Werner (2005) has pointed out, they are often part-time workers who receive minimal training and support and hence rarely gain the necessary skills and confdence to develop the therapeutic and technical skills needed to enable disabled people to reach their potential, both physically and socially. Deepak et al. (2016) echo these concerns, noting that CBR workers are often from low educational backgrounds, tend to have

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heavy workloads and sometimes receive only ‘on-the-job’ training due to high turnover rates. CBR workers moreover require access to an infrastructure of mainstream and specialist services, so that they can make referrals to relevant professionals and services as required. In some settings this may require considerable investment, which is not always forthcoming. In Zimbabwe, CBR programmes were hindered by an over-reliance on donor funding and lack of political will on the part of local government agencies to commit fnancial resources (Bongo et al., 2018). Research conducted in Latin America, based on a series of workshops and focus groups that brought together CBR feldworkers and managers, revealed that some participants felt that CBR projects were often thought to require no resources at all (Grech, 2015). This meant that politicians were reluctant to provide adequate funding and other resources or to facilitate linkages with community stakeholders who could provide support. One of the biggest challenges facing any CBR programme is the need to overcome negative attitudes and beliefs within communities. The potential scale of this problem was illustrated by an evaluation of a CBR initiative in Nigeria, where a restaurant owner was asked whether she would ever consider employing a disabled person. She replied that she would not because ‘they can’t do anything right; besides, they will bring bad luck to my business’ (Tsengu et al., 2006, p. 55). Unfortunately, as Tsengu goes on to report, this view was shared by 80 per cent of private employers in the district. A further challenge arises from the lack of CBR evaluations, which makes it difcult to assess the impact of CBR on disabled people and their families (Grech, 2015; Weber, 2014). CBR programmes often lack clearly defned outcomes and indicators of success, as well as the detailed baseline data that is essential to the measurement of progress (Thomas, 2011). As a result, little is known about the extent to which CBR programmes actually achieve their objectives, particularly in terms of meeting the aspirations of disabled people themselves. Weber et al. (2016) note that local community stakeholders, including disabled people and their families, are often absent from evaluation processes, which tend to be co-opted by powerful outsiders who pay little attention to what actually happens in practice. They call for the use of a participatory evaluation model, which allows for fexibility, adaptation, refection and a willingness to change, involving feld-level project staf and fed by locally generated information identifying the issues of importance to disabled people and their families.9 Despite these challenges, the potential benefts of the CBR approach are widely recognised. In India, for example, a quasi-randomised trial based on interviews conducted with nearly 2,000 CBR benefciaries, as well as over 600 people who formed a control group, across 265 villages within two districts of Karnataka identifed a wide range of positive impacts (Mauro et al., 2014). These included increased access to public pension schemes,

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paid jobs and mobility aids, as well as increased levels of autonomy and independence. Interestingly, the study showed that these impacts were more signifcant after seven years than after four years, pointing to the long-term benefts of CBR. Results such as this suggest that CBR can be a powerful tool for empowerment and support governments in working towards the full implementation of the CRPD. However, programmes must be adequately resourced, culturally sensitive and efectively evaluated. They must also facilitate the genuine participation of community stakeholders, especially disabled people themselves, to ensure that the approaches adopted are based on a true understanding of their realities, needs and aspirations.

Summary of key points • • •

• •

• •

•

Health and rehabilitation services can play a vital role in alleviating poverty, improving quality of life and promoting more inclusive societies. While disability should never be equated with poor health, disabled people are vulnerable to certain health risks and tend to have higher levels of unmet health needs than the general population. Traditionally rooted in the medical model of disability, the concept of rehabilitation has broadened to encompass a wide range of responses to disability, from medical interventions to more comprehensive community-based strategies designed to empower disabled people and promote their full participation. The ICF serves as a useful conceptual framework for guiding rehabilitation approaches, as well as supporting the use of a common language in relation to disability. The CRPD promotes the rights of disabled people to accessible, afordable and high-quality health and rehabilitation services within their own communities. However, a wide range of barriers frequently combine to prevent disabled people from accessing these rights. Disabled people are frequently denied access to sexual and reproductive health services, largely due to the prevalence of harmful myths and stereotypes within communities. Strategies designed to address the barriers include making better use of appropriate technology, implementing alternative models of service delivery, reducing cost barriers through inclusive health insurance or cash transfer schemes, raising awareness of disability rights within healthcare services and challenging misconceptions around disability within wider society. The evolving concept of CBR encompasses approaches that attempt to harness the potential of communities to support disabled people and their families to make best use of existing mainstream and specialist services. However, CBR often requires a signifcant level of investment, without which the quality and sustainability of programmes is likely to be seriously compromised.

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Discussion questions 1) Given the hierarchical nature of many societies in the Global South, how realistic is it to expect health and rehabilitation professionals to act as facilitators and for local disabled people to act as key decision-makers? 2) How might a rehabilitation approach tackle the common community perception, often internalised by disabled people and their families, that disability is a sign of divine retribution for sins committed in the past? 3) Within many cultures of the Global South, community and family interdependence is very strong, with less importance attached to an individual’s independence. How might health and rehabilitation programmes take account of this cultural reality?

Suggested further reading Hashemi, G., Kuper, H. and Wickenden, M. (2017) ‘SDGs, inclusive health and the path to universal coverage’. In Disability and the Global South 4(1): 1088–1111. Hussey, M., MacLachlan, M. and Mji, G. (2017) ‘Barriers to the implementation of the health and rehabilitation articles of the United Nations Convention on the Rights of Persons with Disabilities in South Africa’. In International Journal of Health Policy Management 6(4): 207–218. Weber, J., Grech, S. and Polack, S. (2016) ‘Towards a ‘mind map’ for evaluative thinking in Community Based Rehabilitation: Refections and learning’. In Disability and the Global South 3(2): 951–979.

Notes 1 2 3 4 5

6 7 8 9

See Suggested further reading. See Chapter 11 for further discussion around the results of this survey. The ICF is presented and discussed in Chapter 2. In the ICF, functioning is viewed in terms of activity and participation levels, as well as bodily functioning. ‘Appropriate technology’ is a philosophy which stems from the radical thinking of E. F. Schumacher (1973), based on the principle that choices of technology should put people’s needs frst and should, wherever possible, be based on local skills, knowledge and resources. See Chapter 11 for further discussion around access to health and rehabilitation services during the COVID-19 pandemic. See Suggested further reading. See Chapter 2 for an explanation of the religious model. See Suggested further reading.

References Africa Child Policy Forum (ACPF) (2010) Violence against Children with Disabilities in Africa: Field studies from Cameroon, Ethiopia, Senegal, Uganda and Zambia. Addis Adaba: ACPF.

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Albert, B., McBride, R. and Seddon, D. (2004) ‘Perspectives on Disability, poverty and technology’. In Asia Pacifc Disability Rehabilitation Journal 15(1): 12–21. Amosun, S.L., Mutimura, E. and Frantz, J.M. (2005) ‘Health promotion needs of physically disabled individuals with lower limb amputation in Rwanda’. In Disability and Rehabilitation 27(14): 837–847. Bongo, P., Dziruni, G. and Muzenda-Mudavanhu, C. (2018) ‘The efectiveness of community based rehabilitation as a strategy for improving quality of life and disaster resilience for children with disability in rural Zimbabwe’. Jamba: Journal of Disaster Risk Studies 10(1): 442. Braathen, S., Munthali, A. and Grut, L. (2015) ‘Explanatory models of disability: Perspectives of health providers working in Malawi’. In Disability and Society 30(9): 1382–1396. Chouinard, V. (2012) ‘Pushing the boundaries of our understanding of disability and violence: Voices from the Global South (Guyana)’. In Disability and Society 27(6): 777–792. Cobley, D.S. (2012) ‘Towards economic empowerment: Segregation versus inclusion in the Kenyan context’. In Disability and Society 27(3): 371–384. Connolly, B.H. (2006) ‘Issues in aging in individuals with lifelong disabilities’. In Revista Brasiliera de Fisioterapia Sao Carlos 10(3): 249–262. Cornielje, H. and Tsengu, D. (2016) ‘Equipping Professionals with Competencies to Better Support Persons with Disabilities’. In Iriarte, E., McConkey, R. and Gilligan, R. (Eds.) Disability and Human Rights: Global Perspectives. London: Palgrave, 246–258. COVID-19 DRM (Disability Rights Monitor) (2020) Disability Rights during the Pandemic Retrieved on 21 July  2021 from www.internationaldisabilityalliance. org/sites/default/fles/disability_rights_during_the_pandemic_report_web_pdf_1.pdf Deepak, S., Ortali, F., Halls, G., Damdinsuren, T., Lhagvajav, E., Msowoya, S., Qutteina, M. and Kumar, M. (2016) ‘Disability data collection in community-based rehabilitation’. Disability CBR and Inclusive Development Journal 27(4): 106–123. Dotson, L., Stinson, J. and Christian, L. (2008) ‘People tell me I  can’t have sex: Women with disabilities share their personal perspectives on health care, sexuality, and reproductive rights’. Women and Therapy 26(3–4): 195–209. Drainoni, M.-L., Lee-Hood, E., Tobias, C. and Bachmann, S. (2006) ‘Cross-disability experiences of barriers to health-care access; consumer perspectives’. In Journal of Disability Policy Studies 17(2): 101–115. Eide, A.H., Mannan, H., Khogali, M., van Rooy, G., Swartz, L., Munthali, A., Hem, K.-G., Maclachlan, M. and Dyrstad, K. (2015) ‘Perceived barriers for accessing health services among individuals with disability in four African countries’. In PLoS One 10(5): e0125915. Fiszbein, A. and Schady, N. (2009) Conditional Cash Transfers: Reducing Present and Future Poverty. Washington: World Bank. Garcia-Arguello, L.Y., O’Horo, J.C., Farrell, A., Blakney, R., Sohail, M.R., Evans, C.T. and Safdar, N. (2017) ‘Infections in the spinal cord-injured population: A systematic review’. In Spinal Cord 55(6): 526–534. Gottret, P. and Schieber, G. (2006) Health Financing Revisited: A  Practitioners Guide. Washington: World Bank. Graham, L., Moodley, J., Ismail, Z., Munsaka, E., Ross, E. and Schneider, M. (2014) Poverty and Disability in South Africa. Research Report, Centre for Social Development in Africa. Retrieved on 21 November 2021 from Poverty_Disability Report FINAL July 2014 Web.pdf

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Grech, S. (2008) ‘Living with disability in rural Guatemala: Exploring connections and impacts on poverty’. In International Journal of Disability, Community and Rehabilitation 7(2). Retrieved on 30 January 2017 from www.ijdcr.ca/ VOL07_02_CAN/articles/grech.shtml Grech, S. (2015) Community Based Rehabilitation: Critical Perspectives from Latin America. Bensheim, Germany: CBM. Hashemi, G., Kuper, H. and Wickenden, M. (2017) ‘SDGs, inclusive health and the path to universal coverage’. In Disability and the Global South 4(1): 1088–1111. Hughes, K., Bellis, M., Jones, L., Wood, S., Bates, G., Eckley, L., McCoy, E., Mikton, C., Shakespeare, T. and Ofcer, A. (2012) ‘Prevalence and risk of violence against adults with disabilities: A systematic review and meta-analysis of observational studies’. In The Lancet 379(9826): 1621–1629. Human Rights Watch (HRW) (2010) “As If We Weren’t Human”: Discrimination and Violence against Women with Disabilities in Northern Uganda. New York: Human Rights Watch. Hunt, J. (2011) Situation Analysis of Disability Resources and Needs of Shantytowns Near Lima, Peru. Student Publication. Dayton: Wright State University. Retrieved on 2 December  2021 from http://corescholar.libraries.wright.edu/cgi/ viewcontent.cgi?article=1054&context=mph Hussey, M., MacLachlan, M. and Mji, G. (2017) ‘Barriers to the implementation of the Health and Rehabilitation Articles of the United Nations Convention on the Rights of Persons with Disabilities in South Africa’. In International Journal of Health Policy Management 6(4): 207–218. ILO, UNESCO and WHO (1994) Community-Based Rehabilitation for and with People with Disabilities. Joint Position Paper. Geneva: UN. ILO, UNESCO and WHO (2004) CBR A Strategy for Rehabilitation, Equalization of Opportunities, Poverty Reduction and Social Inclusion of People with Disabilities. Joint Position Paper. Geneva: United Nations. Ingstad, B., Munthali, A., Braathen, S. and Grut, L. (2012) ‘The evil circle of poverty: A qualitative study of malaria and disability’. In Malaria Journal 11(15). International Centre for Evidence in Disability (ICED) (2017) Guatemala National Disability Study (Endis 2016). Main Report. London: London School of Hygiene & Tropical Medicine. Retrieved on 2 December  2021 from www.medbox.org/ pdf/5e148832db60a2044c2d47d3 International Disability and Development Consortium (IDDC) (2004) Inclusive Development and the UN Convention. IDDC Refection Paper. Retrieved on 30 November 2021 from www.un.org/esa/socdev/enable/rights/ahc3iddc.pdf Lang, R., Kett, M., Groce, N. and Trani, J.F. (2011) ‘Implementing the United Nations Convention on the Rights of Persons with Disabilities: Principles, implications, practice and limitations’. In European Journal of Disability Research 5(3): 206–220. Lee, K., Devine, A., Marco, J., Zayas, J., Gill-Atkinson, L. and Vaughan, C. (2015) ‘Sexual and reproductive health services for women with disability: A qualitative study with service providers in the Philippines’. BMC Women’s Health 15: 87. Maart, S. and Jelsma, J. (2014) ‘Disability and access to health care – a communitybased descriptive study’. In Disability and Rehabilitation 36(18): 1489–1493. MacLachlan, P., Mannan, H. and McVeigh, J. (2016) ‘Disability and Inclusive Health’. In Iriarte, E., McConkey, R. and Gilligan, R. (Eds.) Disability and Human Rights: Global Perspectives. London: Palgrave, 150–172.

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Mactaggart, I., Kuper, G.V., Murthy, J., Sagar, J., Oye, J. and Polack, S. (2016). ‘Assessing health and rehabilitation needs of people with disabilities in Cameroon and India’. In Disability and Rehabilitation 38(18): 1757–1764. Magaqa, Q., Ariana, P. and Polack, S. (2021). ‘Examining the availability and accessibility of rehabilitation services in a rural district of South Africa: A mixedmethods study’. In International Journal of Environmental Research and Public Health 18(9): 4692. Mauro, V., Biggeri, M., Deepak, S. and Trani, J.F. (2014). ‘The efectiveness of community-based rehabilitation programs: An impact evaluation of a quasirandomised trial. In Journal of Epidemiology  & Community Health 68(11): 1102–1108. Mavuso, S.S. and Maharaj, P. (2015) ‘Access to sexual and reproductive health services: Experiences and perspectives of persons with disabilities in Durban, South Africa’. In Agenda 29(2): 79–88. McConkey, R. (2007) ‘Community Based Services’. In Barron, T. and Amerena, P. (Eds.) Disability and Inclusive Development. London: Leonard Cheshire International, 21–68. Metts, R. (2000) Disability Issues, Trends and Recommendations for the World Bank. Social Protection Discussion Paper No. 0007. Washington: World Bank. Miles, M. (2007) International Strategies for Disability-related Work in Developing Countries: Historical, Modern and Critical Refections. Retrieved on 24 November 2021 from www.independentliving.org/docs7/miles200701.pdf Mont, D. (2010) ‘Social Protection and Disability’. In Barron, T. and Ncube, J. (Eds.) Poverty and Disability. London: Leonard Cheshire International, 317–339. Oliver, M. (1996) Understanding Disability: From Theory to Practice. Basingstoke: Macmillan. Palmer, M. (2013) ‘Social protection and disability: A  call for action. In Oxford Development Studies 41(2): 139–154. Rehabilitation International (2007) Final Technical Report: Raising the Voice of the African Decade of Disabled Persons: Phase II: Training Emerging Leaders in the Disability Community, Promoting Disability Rights and Developing HIV/AIDS Awareness and Prevention Programs for Adolescents and Young Adults with Disabilities in Africa. New York: Rehabilitation International. Rimmer, J.H. and Rowland J.L. (2008) ‘Health promotion for people with disabilities: Implications for empowering the person and promoting disability-friendly environments’. In Journal of Lifestyle Medicine 2(5): 409–420. Rotarou, E.S. and Sakellariou, D. (2017). ‘Inequalities in access to healthcare for people with disabilities in Chile: The limits of Universal Health Coverage’. In Critical Public Health 27(5): 604–616. Sagli, G., Zhang, J., Ingstad, B. and Fjeld, H. (2013) ‘Poverty and disabled households in the People’s Republic of China: Experiences with a new rural health insurance scheme’. In Disability and Society 28(2): 218–231. Schumacher, E.F. (1973) Small Is Beautiful. London: Bond and Briggs. Shakespeare, T. (2014) Disability Rights and Wrongs Revisited (2nd Edition). Oxon: Routledge. Shakespeare, T., Bright, T. and Kuper, H. (2018) Access to Health for Persons with Disabilities. The Ofce of the United Nations High Commissioner for Human Rights. Retrieved on 30 November 2021 from http://scholar.google.com.ph/ scholar_url?url=https%3A%2F%2Fwww.ohchr.org%2FDocuments%2FIssues%

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2FDisability%2FStandardHealth%2FBackgroundDoc_EGM_Righttohealth.doc x&hl=en&sa=T&oi=ggp&ct=res&cd=1&d=11252942728950998421&ei=c6dy W4ePHo_emgGgn7bIAQ&scisig=AAGBfm0aPGlNWdEjuPLBdoCRboATK5um pg&nossl=1&ws=1680x955 Siqueira, F.C., Facchini, L.A., da Silveira, D.S., Picchini, R.X., Thume, E. and Tomasi, E. (2009) ‘Architectonic barriers for elderly and physically disabled people: An epidemiological study of health service units in seven Brazilian states’. In Ciencia and Saude Coletiva 14(1): 39–44. Steiner, W., Ryser, L., Huber, E., Uebelhart, D., Aeschlimann, A. and Stucki, G. (2002) ‘Use of the ICF model as a clinical problem-solving tool in physical therapy and rehabilitation medicine’. In Physical Therapy 82(11): 1098–1107. Thomas, M. (2011) ‘Refections on community-based rehabilitation’. In Psychology and Developing Societies 23(2): 277–291. Tsengu, D., Brodtkorb, S. and Almdes, T. (2006) ‘CBR and Economic Empowerment of Persons with Disabilities’. In Hartley, S. (Ed.) CBR as Part of Community Development: A Poverty Reduction Strategy. London: UCL, 49–63. UNDESA (United Nations Department for Economic and Social Afairs) (2018) Disability and Development Report: Realising the SDGs, by and for Persons with Disabilities. New York: United Nations. UNFPA (United Nations Population Fund) (2007) Emerging Issues: Sexual and Reproductive Health of Persons with Disabilities. New York: UNFPA. UNFPA (United Nations Population Fund) (2018) Young PERSONS with disabilities: Global Study on Ending Gender-based Violence, and Realising Sexual and Reproductive Health and Rights. New York: UNFPA. United Nations (UN) (2015) Transforming Our World: The 2030 Agenda for Sustainable Development. Retrieved on 3 November  2021 from https://sdgs. un.org/2030agenda Weber, J. (2014) ‘Critical refections on the usefulness of the 3rd regional Conference in CBR in Medellin’. In Disability and the Global South 1(1): 172–180. Weber, J., Grech, S. and Polack, S. (2016) ‘Towards a ‘mind map’ for evaluative thinking in community based rehabilitation: Refections and learning’. In Disability and the Global South 3(2): 951–979. Werner, D. (2005) ‘Community based rehabilitation in rural India: The strengths and weaknesses of diferent models’. Newsletter from the Sierra. Madre 55. Retrieved on 24 November 2021 from http://healthwrights.org/sections/55/1/ WHO (World Health Organization) (1948) Constitution of the World Health Organization. Geneva: WHO. Retrieved on 24 November 2021 from who_constitution_ en.pdf WHO (World Health Organization) (2001) International Classifcation of Functioning, Disability and Health. Geneva: World Health Organization. WHO (World Health Organization) (2002–2004) World Health Survey. Geneva: WHO. WHO (World Health Organization) (2005) Guidelines for Training Personnel in Developing Countries for Prosthetics and Orthotics Services. Geneva: WHO. WHO (World Health Organization) (2009) Promoting Sexual and Reproductive Health for Persons with Disabilities. WHO/UNFPA Guidance Note. Geneva: WHO. WHO (World Health Organization) (2010a) The World Health Report – Health Systems Financing: The Path to Universal Coverage. Geneva: WHO.

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WHO (World Health Organization) (2010b) CBR Guidelines. Geneva: WHO. Retrieved on 24 April 2022 from www.who.int/publications/i/item/9789241548052 WHO (World Health Organization) (2015) WHO Global Disability Action Plan 2014–2021: Better Health for all People with Disability. Geneva: WHO. WHO (World Health Organization) and World Bank (2011) World Report on Disability. Geneva: WHO. World Bank (2009) People with Disabilities in India: From Commitments to Outcomes. Human Development Unit, South Asia Region. Washington: World Bank. Young, R., Reeve, M. and Grills, N. (2016) ‘The functions of disabled people’s organisations (DPOs) in low and middle-income countries: A literature review’. In Disability, CBR and Inclusive Development 27(3): 45–71.

8

Access to education

The Universal Declaration of Human Rights (UN, 1948) established education as a fundamental human right to which all children are entitled. Despite international commitments to the principles of Education for All (EFA) and Universal Primary Education (UPE), however, many disabled children are still not able to access this basic human right. An analysis of survey and census data from 15 low- and middle-income countries (LMICs) found that the proportion of disabled children out of school ranged from seven per cent in South Africa to 72.4 per cent in Albania, with these rates on average 30 per cent higher than the ‘out of school’ rates for all children (Mizunoya et al., 2018). Such estimates should be treated with extreme caution, given the widely reported lack of reliable data on disability in general and on the educational status of disabled children in particular (UNESCO, 2014). However, the available evidence clearly suggests that far too many disabled children remain excluded from education. Furthermore, those who do attend school are often excluded from classrooms and are far less likely to complete primary education than their non-disabled peers (UNESCO, 2015). In terms of educational outcomes, data from ten LMICs shows that from 2017 to 2019 disabled children between the ages of seven and 14 were 19 per cent less likely to achieve minimal profciency in reading than non-disabled children (UNESCO, 2020). Evidence that has emerged since the start of the COVID-19 pandemic suggests that educational inequalities have widened, largely as a result of temporary school closures and the consequent shift to online teaching in many countries (World Bank, 2020). While digital technology has massive potential to transform society and support inclusion (Dobransky and Hargittai, 2016),1 the sudden school closures have disadvantaged many disabled children, either because they live in households that do not have internet access or because technology is not fully accessible to them (COVID-19 DRM, 2020). The impact of COVID-19, in terms of disability and education, is further explored in Chapter 11. This chapter begins by exploring the linkages between disability, education and poverty. Three strategic approaches to meeting the educational needs of disabled children are then presented and discussed. These three approaches – special education, integrated education and inclusive education – are illustrated in Figure 8.1. This is followed by a review of various DOI: 10.4324/9781003256038-8

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Mainstream schools

Mainstream schools Special units

Special schools Special educa˜on

Integrated educa˜on

Inclusive schools

Inclusive educa˜on

Figure 8.1 Three strategic approaches to school education

international agreements that have underpinned initiatives such as EFA and UPE, while increasingly encouraging governments and development agencies around the world to embrace the concept of inclusive education. Finally, the chapter concludes with a discussion around some of the challenges facing policymakers and practitioners, especially in the Global South, as they attempt to put inclusive education into practice and outlines some innovative strategies that have helped some schools to rise to these challenges.

Disability, education and poverty Evidence from LMICs suggests that those living in poverty are most likely to be educationally disadvantaged and that this disadvantage is often reinforced by disability (Rose and Alcott, 2015). This also works the other way because without schooling disabled children are at far greater risk of poverty in their adult lives and will almost certainly become an economic burden on their families and communities (Groce et al., 2011; Filmer, 2008). As well as boosting potential earnings, education can foster social inclusion and potentially have a positive impact on virtually all other dimensions of poverty. Improvements in women’s literacy, for example, have been shown to enhance the health and survival chances of both mothers and their children (Stubbs, 2008). Furthermore, education can bring wider benefts to society in general.

The wider value of education While education is an ongoing process of improving knowledge and skills, it is also – perhaps primarily – an exceptional means of bringing about personal development and building relationships among individuals, groups and nations. Source: UNESCO, 1996, p. 12.

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As this statement implies, education is not just about equipping children with knowledge and skills. It can play an important role in developing personal qualities and building their confdence to embrace opportunities and tackle the challenges that they will face in life. Education thus has the potential to transform the lives of disabled children by preparing them to live full and meaningful adult lives within mainstream society, rather than lives characterised by dependency and isolation. However, in the context of poverty, social exclusion and powerlessness, in which many disabled people live, education alone may not be sufcient to bring about this transformation. Interviews conducted with disabled people living in an impoverished district of rural Guatemala revealed that many of them tended to reject the notion that education would automatically lift them out of poverty due to the existence of a range of disabling barriers that hinder the transition from education to work (Grech, 2014).2 Furthermore, while participants recognised the value of education, particularly in terms of its ‘symbolic value in poor close-knit communities’ (p.  142), they also highlighted the difcult choices that often had to be made where sending children to school might lead to a loss of household income, often vital for meeting basic needs. While the relationship between disability and poverty is highly complex,3 exclusion from education is certainly one of the key mechanisms through which this relationship is reinforced. However, as Grech’s study illustrates, it is far too simplistic to assume that facilitating access to education, without simultaneously addressing discriminatory beliefs and practices in wider society, will necessarily alleviate poverty among disabled people and their families. In particular, inclusive mechanisms are needed to bridge the gap between school and post-school activities, such as vocational training and employment (Banks and Pollack, 2013).

Special education This traditional approach views the disabled child as having ‘special needs’, which cannot, or should not, be catered for within the mainstream system. Thus, disabled children are educated in special schools or at home. This approach refects an individual model perspective on disability,4 because individual diferences associated with disabled children are viewed as a justifcation for their segregation within the education system. For example, they may be viewed as slow learners or needing specialist equipment or specially trained teachers to make progress, or they may have mobility or communication needs which would create difculties for them within mainstream schools that have not been designed to accommodate them. The special education approach, which has efectively led to the creation of a parallel education system for disabled children, is often criticised for reinforcing the segregation of disabled people from a young age and for labelling disabled children, either by their impairments or as ‘special needs children’ (Miles, 2007). In the UK, the 1944 Education Act categorised children with ‘special education needs (SEN)’ according to their types

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of impairment, with some even labelled as ‘uneducable’ or ‘educationally sub-normal’, and established the entitlement of many disabled children to ‘special educational treatment’ in separate schools (HCESC, 2006). The SEN concept was broadened following the release of the Warnock Report in 1978 to include children from poor and disadvantaged backgrounds, and the term is now generally understood as follows:

Special educational needs A child is commonly recognised as having special educational needs (SEN) if he or she is not able to beneft from the school education made generally available for children of the same age without additional support or adaptations in the content of studies. Source: OECD, 2012, p. 1.

Internationally, it has been estimated that some 15–20 per cent of learners will have SEN at some point during the course of their education (OECD, 1999). It is important to emphasise, however, that not all children with SEN are disabled children and that not all disabled children have SEN. The prevalence of special schools in many Northern countries has rapidly declined, as disabled children have increasingly been provided with the necessary support to enable them to attend mainstream schools. However, the special education model has been transferred to the Global South, where numerous special schools have been founded, particularly by colonial administrations and missionaries in the 1950s and 1960s (Kristensen et al., 2006), with many remaining active today. These schools are often located in urban areas, whilst the majority of disabled people live in rural areas, so many of them are residential. This means, inevitably, that disabled children are frequently separated from their families and communities, at least during term-time, to attend school. No country has a fully inclusive education system (WHO and World Bank, 2011) and, in many parts of the world, special schools continue to represent the dominant mechanism for meeting the educational needs of disabled children. For example, an analysis of special education services across 22 Arab countries of the Middle East and North Africa reveals that, despite many of these countries having ratifed the CRPD and revised their educational policies to promote inclusive education, the segregation model remains ‘the primary model used in the provision of special education services’ (Hadidi and Khateeb, 2015, p. 520). Globally, it is estimated that 25 per cent of countries have provisions for special education in place, mainly in Asia, Latin America and the Caribbean, while 48

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per cent of countries have systems in place that combine mainstreaming with separate settings, usually reserved for those with severe impairments (UNESCO, 2020). Recent evidence shows that a signifcant proportion of disabled children continue to attend special schools. In the Asia and Pacifc region, for example, evidence from 21 countries and territories shows that, on average, 19 per cent of disabled children attend special primary schools (UNDESA, 2018). While special schools that continue to operate in high-income countries are often well resourced, with specialist facilities and teachers who are specially trained to work with disabled children, this is rarely the case in the Global South. While some receive donor funding, this is often time-limited and many special schools are poorly resourced once initial donor funding has stopped (Stubbs, 2008). This situation is only likely to get worse as Northern NGOs increasingly commit to the principle of mainstream inclusion, and many are now already ‘extremely reluctant to fund segregated schools, vocational centres and residential facilities for people with disabilities’ (Le Fanu, 2014, p. 76). The special education approach has received some criticism for its tendency to exert considerable pressure on children to achieve ‘normal functioning’ rather than accepting their physical and intellectual diferences as a natural part of human diversity. As Stubbs (2008) points out, ‘this can result in an inappropriate emphasis on making a child talk, or walk, when this is unrealistic and can cause undue pain’ (p. 43). Oliver and Sapey (2006) go further, referring to such practices as a form of emotional abuse, as they reinforce the notion that any form of impairment implies abnormality rather than allowing disabled children the opportunity to form their own positive self-identities within a diverse society. They ofer the example of deaf children, who attend special schools that allow only lip-reading to conform to the hearing norms of society, thus denying them the opportunity to develop sign language skills that would enable them to ‘become part of a linguistic culture’ (p. 101). Notwithstanding these criticisms, it should be noted that many disabled people’s organisations (DPOs) continue to advocate for separate, specialist services, including special schools (Ainscow and Miles, 2008). In some cases, families may feel that their children will receive a higher quality and more specialised education in a segregated setting, especially if mainstream schools are ill-equipped to meet the needs of disabled children. This was illustrated by research conducted in Botswana, for instance, which revealed that many families feel that sheltered environments, with smaller class sizes and specially trained teachers, ofer a far more useful education than typically crowded mainstream classrooms, in which some parents fear that their children would be bullied by other children or even incur the wrath of their teachers for not being able to keep up in class (Ingstad, 2007). Even in highincome settings, parents may express a preference for specialist education within segregated settings where they feel that mainstream schools do not

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cater for their children’s needs. In the Australian State of Queensland, for example, 37 per cent of students in special schools have moved from mainstream schools (UNESCO, 2020). The future role of special schools While special schools may continue to play an important role in the education of disabled children, especially in the Global South, for years to come, it seems inevitable that many will eventually close as mainstream systems gradually adapt and become more able to accommodate diverse learning needs. However, the potential future role of special schools, in terms of flling the gaps in inclusive education and providing specialist support to inclusive schools, should not be ignored (Dyson, 2004). It is important to recognise that special schools are often a source of expertise and specialist knowledge, accumulated over many years, which can be a valuable source of support for disabled learners within the mainstream system, as well as helping to facilitate the changes that inclusive practice requires. They may be a source of expertise in braille or sign language, for example, which mainstream schools could make use of to become more inclusive of children with visual or hearing impairments. In South Africa, the government has established an education structure that includes the ‘special school as resource centre’, ofering ‘on-site support for students with high-level learning needs, as well as providing support to neighbouring schools and communities’ (Muthukrishna et al., 2016, p. 139). A similar approach has been implemented in Ghana, where special schools have been transformed into resource centres that work closely with mainstream schools and assessment centres to support them in terms of improving physical accessibility and promoting inclusive values, such as participation, friendship and interaction (Government of Ghana, 2015).

Integrated education Integrated education, sometimes referred to as ‘mainstreaming’, involves supporting disabled children within mainstream schools, either through the provision of specialist support within mainstream classes or by setting up special classrooms or units within mainstream schools. This approach recognises that disabled children have a right to participate in mainstream education alongside their non-disabled peers. However, the focus remains on supporting the individual child within a system that is not designed to include them, rather than making fundamental changes to the system itself to make it more inclusive. This potentially reinforces the notion that disabled children can be taught only by ‘special’ teachers using ‘special techniques’ (Stubbs, 2008). As de Beco (2018) points out, placing disabled children in separate classes for much of the time, rather than changing the school’s support systems and ethos to accommodate them within regular classes, is

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at odds with the goal of inclusion. As with special education, therefore, the integrated approach tends to refect an individual model perspective on disability where the child, rather than the system, is viewed as the problem that needs to be addressed. Notwithstanding these criticisms, there are signifcant diferences between integrated education and special education. Integration does aim to facilitate some socialisation between disabled children and their non-disabled peers, thus promoting social integration and moving a step towards full inclusion while ensuring that disabled children can still learn at their own pace and receive the specialist support that they require. Also, it opens up the possibility of children moving between special and mainstream classes, without having to change schools to do so. A study of special units attached to mainstream schools in the Bushenyi district of Uganda identifes several advantages of the integrated approach over special schools, including reduced travelling time for children, due to wider coverage, and greater levels of engagement with parents and the local community (Miles et al., 2011).

Inclusive education

Defnition of inclusive education Inclusion is seen as a process of addressing and responding to the diversity of needs of all learners through increasing participation in learning, cultures and communities and reducing exclusion within and from education. It involves changes and modifcations in content, approaches, structures and strategies, with a common vision which covers all children of the appropriate age range and a conviction that it is the responsibility of the regular system to educate all children. Source: UNESCO, 2004a, pp. 12–13.

Inclusive education is not just about disability. It is about including all children, irrespective of their individual diferences and needs, within the mainstream system. While disabled children are certainly among those at high risk of exclusion, children may also be excluded from schooling on the basis of language, gender, ethnicity, economic circumstances and refugee status. In fact, inclusive education has sometimes been viewed as part of a wider movement towards tackling the social exclusion of those children ‘on the margins of society’ (DFID, 2000, p. 12). However, inclusive education should be viewed not just as an approach that targets marginalised children but as one that aims to completely transform educational systems (Opertti et al., 2014). For inclusion to work efectively, education systems need to be

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adapted to ensure that they meet the learning needs of all children based on the fundamental belief that all children have value and educational potential. It is essential that all within the school environment, including pupils, teachers and administrators, buy into this principle, often requiring a fundamental change in ways of thinking that is unlikely to be achieved overnight. Developing fully inclusive schools may sometimes require a lengthy and ongoing process of sensitisation, which ‘aims to enable both teachers and learners to feel comfortable with diversity and to see it as a challenge and enrichment in the learning environment, rather than a problem’ (UNESCO, 2003, p.  7). UNESCO has strongly advocated for the worldwide adoption of inclusive education in a series of ‘open fle’ documents, one of which presents the three-point justifcation shown in Box 8.1.

Box 8.1 •

•

•

Three-point justifcation for inclusive education

There is an educational justifcation; the requirement for inclusive schools to educate all children together means that they have to develop ways of teaching which respond to individual diferences and therefore beneft all children. There is a social justifcation; inclusive schools are able to change attitudes to diference by educating all children together, thereby forming the basis for a just and non-discriminatory society which encourages people to live together in peace. There is an economic justifcation; it is likely to be less costly to establish and maintain schools which educate all children together than to set up a complex system of diferent types of schools specialising in the education of specifc groups of children. Inclusive schools ofering an efective education to all of their students are a more cost-efective means of delivering Education for All.

Source: UNESCO, 2001, p. 20.

Refection exercise 8.1 Defne ‘inclusion’ in your own words. Then think of a school or other educational institution that you are familiar with. To what extent does this school or other educational institution refect your defnition? What changes could be made within this school or other educational institution to make it more inclusive?

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International agreements on disability and education The agreements covered in this section have played a key role in encouraging governments and development agencies to reach out to all those children who are excluded from the education system, estimated to number around 258  million globally or 17 per cent of the global population of children (UNESCO, 2020). These agreements have particular relevance for the disability sector, given that disability is one of the primary (and often neglected) causes of educational exclusion (UNESCO, 2014). United Nations Convention on the Rights of the Child (CRC) 1989 The CRC (UN, 1989) reinforces the rights of all children, irrespective of impairment or disability, to free primary education, which should develop each child’s personalities, talents and abilities to the fullest (Article 29). Article 23 is particularly relevant, emphasising the need to ensure that the disabled child has efective access to and receives education, training, health care services, rehabilitation services, preparation for employment and recreation opportunities in a manner conducive to the child’s achieving the fullest possible social integration and individual development. (Paragraph 3) Article 23 recognises that to achieve these objectives, disabled children may need ‘special care’ (Paragraph 2), which could be interpreted as recognition of the role of special education. Jomtien Conference, 1990 This conference in Thailand, involving national governments, civil society groups, UNESCO and the World Bank, was the launching pad for the EFA initiative. The conference recognised that educational opportunities were limited for some children while others were excluded altogether. In particular, the exclusion of girls was highlighted. The principles underpinning EFA, which was the internationally agreed response to this problem, were set out in the World Declaration on Education for All (UNESCO, 1990). This document proclaimed that ‘every person – child, youth, adult – shall be able to beneft from educational opportunities designed to meet their basic learning needs’ (Article 1(1)). Moreover, the Declaration included a commitment to reducing educational disparities and made special mention of disability, noting that ‘steps need to be taken to provide equal access to education to every category of disabled persons as an integral part of the education system’ (Article 3(5)).

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Salamanca Conference, 1994 The aim of this world conference was to further the objectives of EFA. The resulting ‘Salamanca Statement on Principles, Policy and Practice in Special Needs Education’ (UNESCO, 1994) was instrumental in raising the profle of inclusive education within international development discourse, calling on governments to adopt as a matter of law or policy the principle of inclusive education, enrolling all children in regular schools, unless there are compelling reasons for doing otherwise. (Section 3) It was envisaged that regular schools would rise to this challenge by developing systems and child-centred teaching strategies aimed at meeting the diverse needs of children. One impact of the Salamanca Statement is that those involved in organising and delivering education have been encouraged to view changes made to meet the needs of those experiencing educational difculties as potentially benefcial to all children and therefore a stimulus to the development of richer and more child-friendly learning environments (Miles, 2007). Millennium Development Goals (MDGs), 2000 The 2000 Millennium Declaration (UN, 2000) included the goal of achieving UPE by 2015,5 so that ‘children everywhere, boys and girls alike, will be able to complete a full course of primary schooling’ (MDG 2). Although the MDGs were silent on disability, it is now widely recognised that the goal of UPE will never be achieved without addressing the exclusion of disabled children from schooling. World Education Forum for Action, Dakar, 2000 Also in 2000, the World Education Forum in Dakar reviewed progress on achieving EFA. This led to the release of the Dakar Framework for Action (UNESCO, 2000). While recognising ‘signifcant progress’ towards achieving EFA in many countries, the Dakar Framework noted that 113  million children still had no access to primary education. To address this, a set of new targets, compatible with the MDGs, was identifed to accelerate progress towards the full achievement of EFA. There was no specifc mention of disability, however, although it has since been estimated that 40 million of the 113 million excluded children were disabled children (Guernsey et al., 2006). Strategies identifed for achieving the targets included national action plans on EFA, developing participatory and accountable school governance systems, enhancing the status

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of teachers and creating more inclusive and equitably resourced learning environments. EFA Flagship on the Right to Education for Persons with Disabilities, 2004 The EFA Flagship (UNESCO, 2004b), developed by UNESCO in collaboration with international disability organisations, represented an attempt to address the lack of specifc reference to the needs of disabled children in the Dakar Framework. This document stressed that the targets set out in the Dakar Framework could be achieved only if EFA was extended to disabled people. This would involve ensuring that public education systems were fully accessible and geared to meeting the needs of disabled children and adults. United Nations Convention on the Rights of Persons with Disabilities (CRPD), 2006 The CRPD calls on governments to ‘ensure an inclusive education system at all levels’ (UN, 2006, Article 24, Paragraph 1), clearly implying that education should be delivered to disabled children within fully inclusive mainstream schools. Article 24 also recognises that disabled children may require extra support to beneft fully from inclusive education, calling on governments to ensure that ‘efective individualised support measures are provided in environments that maximise academic and social development, consistent with the goal of full inclusion’ (Paragraph 2(e)). Such measures could include the use of alternative communication systems, such as braille and sign language, and Article 24 goes on to emphasise the importance of ensuring that education is delivered in the ‘most appropriate languages and modes and means of communication for the individual’ (Paragraph 3(c)). This point could be used to support the argument that special schools may be more likely to ofer an environment that maximises academic and social development, especially for children with visual and hearing impairments, than mainstream schools. The World Federation for the Deaf (WFD) has advocated for special schools on this basis, pointing out that if deaf children are placed in regular schools, where many children and staf cannot use sign language, they are likely to be ‘physically present but mentally and socially absent’ (WFD, 2007, p. iii). 2030 Agenda for Sustainable Development The 2030 Agenda (UN, 2015), built around the Sustainable Development Goals (SDGs), is underpinned by the principles of equity and inclusion, as refected in its bold promise to ‘leave no one behind’. Recognising that disabled people are among those who have frequently been left behind by

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development processes, Agenda 2030 makes several references to disability,6 which is treated as a cross-cutting issue. SDG 4 is of particular relevance here:

SDG 4 Ensure inclusive and equitable quality education and promote lifelong learning opportunities for all.

Target 4.5 By 2030, eliminate gender disparities in education and ensure equal access to all levels of education and vocational training for the vulnerable, including persons with disabilities, indigenous peoples and children in vulnerable situations.

Target 4a Build and upgrade education facilities that are child-, disability- and gender-sensitive and provide safe, non-violent, inclusive and efective learning environments for all.

SDG 4 has a wide scope, highlighting the importance of quality as well as participation and the need for ensuring educational opportunities for people of all ages. The emphasis on quality refects the uncomfortable realisation that simply attending school does not necessarily equate to learning (Rose and Alcott, 2015). In fact, it has been estimated that around 130  million children have completed four years of schooling without learning the basics (UNESCO, 2014). It is essential, therefore, to understand where the learning gaps arise, who they afect and what can be done to address them. The challenge is to ensure that children are able not only to attend school but also to achieve positive educational experiences and outcomes. As with all of the SDGs, this goal is accompanied by a set of targets, including the two which explicitly refer to disability. The achievement of Target 4.5, in particular, requires the disaggregation of all education indicators by disability status, as acknowledged within the indicator framework that forms part of Agenda 2030. It should be noted of course that all of the targets are implicitly inclusive of disability, given that no target will be met unless met for all (UNESCO, 2015). The SDGs are likely to exert a strong infuence on international development priorities in the coming years. Together with the CRPD and several

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of the other agreements covered in this section, they create a clear mandate for governments and development agencies to support the implementation of inclusive education across the globe. The next section focuses on some of the challenges facing this implementation process.

Inclusive education in practice The task of efectively implementing inclusive education is far from straightforward, especially in resource-poor settings of the Global South. This section examines some of the common challenges that arise in fve areas – accessibility, resources, teaching approaches, attitudes and violence and bullying – and considers various strategies that may help to address these challenges. Inaccessible schools Physical access barriers prevent many disabled children from attending inclusive schools while reducing the quality of the educational experience for those who do attend. For example, a lack of handrails and inadequate lighting or signage may create barriers for children with visual impairments, poor acoustics may disadvantage children with hearing impairments, while those with mobility impairments may have problems moving around the school and making use of facilities. In Tanzania, for example, disabled children often have to be carried up the stairs to their classrooms by their peers while washrooms are often too small for a child in a wheelchair to navigate (Opini and Onditi, 2016). An analysis of survey data from Nepal, Lesotho, Malawi, Chile, South Africa and Mozambique showed that, on average, 22 per cent of survey respondents reported that schools were either inaccessible or that accessibility was hindered (UNDESA, 2018). Disabled children may also encounter signifcant barriers in getting to school, such as inaccessible or costly transport and uneven terrain, which is unsuitable for children using wheelchairs or other mobility aids. Disabled girls, in particular, are often at risk of exclusion due to fears for their safety when travelling unaccompanied over long distances or on public transport (WHO and World Bank, 2011). In Mozambique, 24 per cent of disabled students have actually stopped attending school because it is too far away or there is no transport available (UNDESA, 2018), while in Thailand many parents prefer to send their disabled children to special needs boarding schools due to a lack of accessible transport (Bualar, 2016). Improving accessibility Creating a learning environment that is welcoming, accessible and safe, as well as facilitating efective learning for disabled children, is vital to the

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success of inclusive education. Some improvements can be made to the physical accessibility of schools without incurring huge costs. For example, sensory indicators and colour contrasting can make the school environment safer and easier to navigate for children with visual impairments. As Schuelka (2018) points out, many of the reforms that are needed to implement inclusive education successfully are design-focused rather than resource-intensive. The physical layout of classrooms can easily be changed to allow disabled children to participate as fully as possible in classroom activities. Children with mobility impairments, for example, may need extra space around them to allow them to move freely. It is also important to create a welcoming atmosphere, within the classroom, which encourages children to learn at their own pace and responds fexibly to individual needs. Large, noisy classes can present challenges to children with sensory or intellectual impairments, which may be reduced by simply allowing them to sit close to the teacher or pairing them up with other children (or classroom assistants, where they are available) who can support them during lessons. School resources In many countries, class sizes tend to be very large while resources to facilitate meaningful inclusion may not always be available. When UPE was frst introduced in Uganda, for example, many schools were overwhelmed by a large infux of previously excluded children, including disabled children (Afako et al., 2002). This reportedly had a negative impact on all students, leading to discipline problems and higher dropout rates. More recently, UNESCO (2015) reports that pupil-to-teacher ratios are higher than 100 to one in certain countries, such as Guinea Bissau, Central African Republic and South Sudan. A lack of resources, such as school facilities, qualifed teachers and learning materials, can make it very difcult to meet the diverse needs of all learners, a fundamental requirement for inclusive schools. According to UNICEF data, only 41 per cent of 88 countries provide appropriate learning materials in their schools while only 33 per cent of these countries provide adequate human resources (UNDESA, 2018). In Thailand, Bualar (2016) notes that many inclusive schools are under-resourced due to a lack of data on school-age disabled children, especially those living in rural areas, which has impeded policy formulation and budget allocation. Overcoming resource constraints In resource-poor settings the local community, including parents and children themselves, can be a vital source of support to inclusive schools (UNICEF, 2009). Case Study 8.1 provides an example of an approach to overcoming resource constraints that is built on strong community involvement and positive attitudes.

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Case Study 8.1: Early years education in Dharavi, Mumbai In Dharavi, India’s largest informal settlement located on the outskirts of Mumbai, the National Resource Centre for Inclusion and UNICEF implemented a project to provide preschool education to disadvantaged children, many of whom had previously been excluded from government education initiatives. The project reached more than 1,200 children in its frst three years, including many disabled children, enabling them to follow an established early childhood curriculum, including personal hygiene, nutrition and English. The frst pilot project enrolled 432 children, including 43 disabled children, and employed local women, as well as involving community workers, helpers and parents. Research had established that many parents had previously opposed the inclusion of disabled children, so parent education sessions and focus groups were held to disseminate information and gauge changing attitudes. Also, the pilot project adopted an ecological curriculum, making use of teaching resources that had been creatively produced from recycled materials, such as plastic bottles, empty boxes and old clothes, with the help of volunteers and parents. The scheme was successful in terms of both enrolling disabled children, who showed more developmental progress than non-disabled children during the frst six months of the project, and in terms of promoting more positive attitudes towards disability and inclusion within their own households and their deeply impoverished local communities. Source: Adapted from Reiser (2008).

Another innovative strategy for addressing resource constraints is the use of itinerant teachers, who can sometimes provide a cost-efective means of addressing teacher shortages and providing additional support to disabled children in areas such as communication, orientation and mobility. Research conducted in Kenya found that itinerant teachers had played a crucial and wide-ranging role in promoting inclusive educational practices for children with visual impairment, providing regular visits to check on their progress within inclusive classrooms and supporting their transition from primary to secondary school (Lynch et al., 2011). In some cases, the itinerant teachers had also taken on a pastoral role for disabled children and their families, even mediating between schools and families to resolve issues such as unpaid fees.

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There is clearly a need for adequate funding to support the implementation of inclusive education, especially in the Global South. The World Report on Disability (WHO and World Bank, 2011) acknowledges this, calling for funding mechanisms that are easy to understand, fexible, predictable and cost-based. According to UNESCO (2003), inclusive education is most likely to succeed when school funding is decentralised, with budgets delegated to local authorities and funds allocated on the basis of performance indicators (such as enrolment fgures). Funding can also sometimes be leveraged through collaborations with donor agencies. Schuelka and Johnstone (2012) provide examples of North–South and South–South collaborations that have supported successful inclusive education initiatives in the Global South, while emphasising the importance of ensuring that such collaborations facilitate local decision-making and empowerment. Rigid teaching curricula and methods Curricula and teaching methods are sometimes too rigid to meet the diverse needs of all children. Disabled children may be particularly disadvantaged where teaching materials have not been provided in alternative formats, such as braille or large print. Reports from several countries that participated in the Global Initiative on Out-Of-School Children, launched by UNICEF and UNESCO Institute for Statistics (UIS) in 2010, revealed that school programmes and teaching materials were rarely adapted to meet the needs of disabled learners and that teachers often received little or no training on inclusive teaching methods (UIS, 2015). Assessment methods may also be too rigid, focusing on academic performance rather than valuing the progress made by individual learners. In Uganda, for example, a study of three inclusive schools found too much emphasis on formal examinations and little evidence of adaptation for children with intellectual and hearing impairments enrolled at the schools, with some teachers showing ‘little concern about diferent needs in their classes’ (Arbeiter and Hartley, 2010, p. 74). In a similar vein, Saebones et al. (2015) note that disabled children are often disadvantaged by examinations and tests where there is a failure to make reasonable accommodations. They recommend the development of assessment tools which corresponded with individualised learning approaches, in line with the CRPD’s call for the ‘full development of human potential, personality, talents and creativity’ (Article 24, Paragraph 1). Child-to-child approach The child-to-child approach is an innovative teaching strategy that has been adopted in many countries, especially in the Global South. This strategy, developed in the late 1970s by a group of health and education professionals, involves engaging children on health and social issues and encouraging them to disseminate their learning to other children, their families and the wider community. While activities and approaches may vary, the

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common aim is to encourage children to support each other, understand each other better and work together to share their knowledge. In the Indian city of Mangalore, for example, the child-to-child approach was found to be efective in improving the hand-washing techniques of children within one school, and there were also hygiene benefts for the wider community as children were able to pass on their training to elder and younger siblings (Mathew and Sujatha, 2018). This approach has real potential to enrich the lives of disabled children, who are often socially isolated within their families and communities, by encouraging them to play and learn with their non-disabled peers and to share their learning with others, thus building their capacity to communicate, socialise and empathise. These positive interactions can help to overcome social barriers between disabled and non-disabled children, as well as promoting positive attitudes to disability within the wider community. Childto-child strategies can also be an efective means of providing practical support to disabled children, especially in resource-poor settings. In Bhutan, for example, some inclusive schools in rural and semi-urban areas have assigned older children as peer supports to younger disabled children, assisting them to the toilet and even helping them on the journey to and from school (Jigyel et al., 2020). Case Study 8.2 provides another example of the child-to-child approach, this time within an integrated school setting in Zambia.7

Case Study 8.2: Child-to-child approach in Mpika, Zambia In Mpika, Zambia, there is a very strong history of teachers communicating health education messages through child-to-child methods and of the activities being incorporated into maths, English, geography and social studies lessons. In the mid-1990s, they began to use the same methods to explore community attitudes to disability. Schoolchildren were asked to conduct a community survey to identify those children who were ‘out of school’ and to fnd out why they stayed at home. This was very successful in raising awareness and including children in school who would otherwise have remained at home. It was also a very effective way of encouraging the parents of some of the children to reduce their domestic workloads to enable them to attend school. A  project was then developed to break down the social barriers which existed between the children being educated in the special unit and those in the main school. The focus was on developing friendships, travelling to school together, home visits at weekends, providing support with academic work and so on. Source: Miles, 2007, p. 85.

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Discriminatory attitudes Disabled children are sometimes kept from attending school due to a lack of disability awareness, compounded by stigma and discriminatory attitudes surrounding disability, including the common misconception that it is not worth educating them because they are not capable of achieving anything worthwhile. Country reports from the ‘Global Initiative on Out-Of-School Children’ have identifed negative attitudes, such as the belief that disability is a punishment for past misdemeanours, often internalised by the parents of disabled children, as a ‘major factor in whether children enrol or fail to complete their education’ (UIS, 2015, p. 79). Teacher attitudes are crucial to ensuring that disabled children stay in school and are included in classroom activities, but some may feel that they should not be obliged to teach disabled children. In Zambia, for example, interviews conducted with 11 mothers of children with physical impairments revealed that even when headmasters had agreed to admit disabled children to their schools, the teachers would sometimes refuse to allow them into the classrooms, claiming that they did not have the necessary equipment or skills to teach them (Hansen et al., 2014). Research conducted in Columbia, where inclusive schools employ ‘specialised support teachers’ to provide extra support to disabled children within mainstream classrooms, found that the general classroom teachers tended to view disabled pupils as the sole responsibility of the support teachers and hence were often reluctant to work with them at all (Kamenopoulou, 2018).8 Raising disability awareness Eliminating misconceptions and raising disability awareness among schoolchildren and professional staf, as well as within the wider community, is crucial to the successful implementation of inclusive education. For example, the awareness-raising campaign that was incorporated into the Early Years Education project in Mumbai (see Case Study 8.1) was of great importance in helping to ensure that community volunteers and parents fully understood the concept of inclusive education and recognised its potential benefts to their children. This enabled the project team to draw on their willingness to support the implementation of inclusive education, which they might otherwise have opposed. DFID (2010) recognises the key role that parents and communities can play, arguing that a sustained and targeted awareness campaign can increase understanding that education is a basic human right, not only to encourage parents to send their children with disabilities to school, but to make the wider community aware that such children should attend school, and should be part of mainstream classes. (p. 11)

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DPOs can also play an important role in such campaigns, helping to challenge negative attitudes within communities and explaining the potential benefts of inclusive education, as they are uniquely positioned to make contact with the parents of disabled children and to gain their trust. Violence and bullying It has been estimated that disabled children are three to four times more likely than non-disabled children to be victims of any type of violence in all settings (Jones et al., 2012). While there is very little data available on the extent to which disabled children experience bullying and violence, particularly in the Global South (Devries et al., 2014), the available evidence suggests that they are highly vulnerable to bullying and violence in both mainstream and segregated school settings. In fact, a review of over 300 academic articles, together with reports produced by international organisations, found that in every study or report that compared the experiences of disabled children with their non-disabled peers, disabled children were either as likely or more likely to experience bullying and violence (UNESCO, 2021). Children with emotional and behaviour difculties, communication difculties and intellectual impairments were found to be at the greatest risk. In Korea, for example, research based on a questionnaire survey that was completed by over 15,000 parents of school-age children, including 86 children with Autistic Spectrum Disorder (ASD), found that children with ASD were over four times more likely to be victims of school bullying than community comparison children (Hwang et al., 2018). The types of violence and bullying that have been reported within school environments can be broadly categorised into three overlapping areas, as illustrated in Figure 8.2. School bullying and violence covers a wide spectrum, as Figure 8.2 shows, and disabled children are vulnerable to all these forms of abuse. In China, for example, focus group discussions with young disabled people revealed past experiences of physical and psychological abuse at school, including ‘being pushed, kicked, teased, mocked and imitated, having their belongings damaged, stolen or hidden and being socially excluded’ (UNESCO, 2021, p. 4). In Chile, research based on a survey of 17,364 children in primary and middle schools identifed disability as one of the strongest predictors of vulnerability to peer sexual harassment (Lopez et al., 2020). Some studies have identifed cyberbullying as a particular risk for disabled children, especially those with ASD and Attention-Defcit Hyperactivity Disorder (ADHD) (see, for example, Heiman et al., 2015; Kowalski and Fedina, 2011). While most of the studies in this feld identify children as the perpetrators of bullying and violence within schools, there is some evidence of increased levels of violence perpetrated by teachers towards disabled children. In Uganda, for example, a study on violence within primary school settings found disabled girls to be at greater risk of all forms of violence (but especially sexual violence) from school staf than non-disabled girls,

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Physical a°acks

Corporal punishments Destroying property

Verbal abuse

Bullying

Physical fghts

Emo˜onal abuse

Sexual harassment sexual touching

ce len io lv

Phys ica lv io l

ce en

Social exclusion Coercion

Rape including a°empted rape

Sexual comments and jokes

S ex

u al v iole nc e

Figure 8.2 Conceptual framework of school violence and bullying Source: UNESCO, 2019, p. 11.

although disabled boys were found to have experienced lower levels of violence from school staf than disabled girls and fairly similar levels to non-disabled boys (Devries et al., 2014). Focus groups conducted among young disabled people in several countries revealed several incidents of psychological abuse at the hands of teachers, refecting wider societal attitudes around disability and often encouraging other children to follow suit (UNESCO, 2021). One participant described the following experience:

Psychological abuse in the classroom I had a male classmate who was both deaf and had an intellectual impairment . . . The teacher would speak openly in front of the whole class, ‘Oh that guy is an idiot. He doesn’t study well. He should just quit and go out to work. But which boss would hire someone like him? He is totally useless!’ The students in my class believed in the teacher and would also bully him. . .. He quit in 12th grade to work in a noodle restaurant (Focus group participant, hearing disability, China). Source: UNESCO, 2021, p. 5

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Addressing bullying and violence within schools UNESCO (2020) has developed a useful framework for addressing bullying within schools, known as the Whole Education Approach, a holistic approach which emphasises the interconnectedness of the school with the wider community including educational, technological and societal systems, values and pressures, all of which can impact on the prevalence and type of bullying and cyberbullying that occurs within a school. (p. 2) This framework, summarised in Box 8.2, highlights nine key areas where interventions can help to minimise the risk of bullying and violence occurring. The whole education approach framework is designed to be implemented nationally across the entire education system to protect all children from bullying and violence, while also recognising that face-to-face bullying and cyberbullying often occur simultaneously. For this framework to be successful in keeping disabled children safe from bullying and violence, it is essential that disability is mainstreamed across all of these nine areas. This means, for example, that teachers need to be trained and supported to view disability positively and to uphold disability rights, learning and teaching approaches need to be fexible, community links

Box 8.2

• • • • • • • • •

The nine components of the whole education approach to prevent and address bullying and cyberbullying

Strong political leadership, together with a robust policy and legal framework; Training and support for teachers to create caring classrooms; Curriculum, learning and teaching approaches that create a caring school climate; Safe psychological and physical school environment; Reporting mechanisms, together with support and referral systems; Involvement of community stakeholders, including parents; Student empowerment and participation; Multi-sector collaboration; Monitoring and evaluation mechanisms.

Source: Adapted from UNESCO, 2020, p. 20.

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need to be developed and monitoring systems need to provide opportunities for disabled children and their families to provide feedback (or make complaints).

Refection exercise 8.2 Imagine that you are a teacher working at an inclusive primary school in a rural region of a low-income country. There are 60 children in your classroom between the ages of seven and ten. A new child named Alice, who has cerebral palsy and low vision, has just been enrolled. Alice uses crutches and needs extra time and space for movement. She enjoys singing and drama but often shuns afection and dislikes being touched. Write down a list of barriers to learning that Alice might encounter within your classroom. Then list the various types of preparation that you could make to help Alice to settle in the class.

Summary of key points • • • •

• • •

Access to education is a basic human right and vital to the well-being of disabled children. Education can develop skills, knowledge and confdence in disabled people, preparing them for full participation in society and reducing the risk of them falling into long-term poverty. The special education approach, still dominant in many parts of the world, views disabled children as having ‘special needs’ and involves the segregated provision of education within special schools or at home. Integrated education involves supporting disabled children within regular schools, either within mainstream classes or in separate on-site units. The onus remains on the individual child to adapt rather than on the whole education system to become more fexible and responsive to the needs of all children. Inclusive education involves making changes to the whole school environment, including buildings, equipment, curricula, teaching methods and attitudes, to enable it to respond to the diverse needs of all learners. A series of international agreements has underpinned the introduction of the EFA and UPE initiatives, while increasingly advocating in favour of inclusive education. A wide range of challenges can hinder the efective implementation of inclusive education, especially within resource-poor settings. This chapter has reviewed some of these challenges, including accessibility concerns, resource limitations, rigid teaching approaches, discriminatory

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attitudes and, fnally, bullying and violence. Innovative strategies, such as making simple, low-cost accessibility improvements within schools, encouraging children to support each other and harnessing potential support within local communities, can help schools to rise to these challenges.

Discussion questions 1) How might cultural beliefs and attitudes in your own country infuence the implementation of inclusive education? 2) How might you support a family that was reluctant to send their disabled child to school? 3) How can inclusive schools make best use of the specialist knowledge and skills that can often be found within special schools?

Suggested further reading Grech, S. (2014) ‘Disability, poverty and education: Perceived barriers and (dis)connections in rural Guatemala’. In Disability and the Global South 1(1): 128–152. Kamenopoulou, L. (2018) ‘Inclusive education in the global South? A Columbian perspective: ‘When you look towards the past, you see children with disabilities, and if you look towards the future, what you see is diverse learners’. In Disability and the Global South 5(1): 1192–1214. Schuelka, M. (2018) Implementing Inclusive Education. K4D Helpdesk Report. Birmingham: GSDRC.

Notes 1 See Chapter 6 for further discussion around technology and disability. 2 See Suggested further reading. 3 See Chapter  3 for further discussion on the relationship between poverty and disability. 4 See Chapter 2 for an explanation of the individual model. 5 See Chapter 4 for a full list of the MDGs. 6 See Table 4.2, Chapter 4, for a full list of these explicit references. 7 Further information about child-to-child is available at www.childtochild.org. 8 See Suggested further reading.

References Afako, R., Ojwang, P., Warimu, C. and Hartley, S. (2002) Implementation of Inclusive Education in Uganda. Based on collaborative research between the centre of International Child Health and the Uganda National Institute of Special Education. Paris: UNESCO. Ainscow, M. and Miles, S. (2008) ‘Making education for all inclusive: Where next’. In Prospects 38: 15–34.

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Arbeiter, S. and Hartley, S. (2010) ‘Teachers and pupils’ experiences of integrated education in Uganda’. In International Journal of Disability, Development and Education 49(1): 69–78. Banks, L.M. and Pollack, S. (2013) The Economic Costs of Exclusion and Gains of Inclusion of People with Disabilities: Evidence from Low- and Middle-income Countries. London: CBM and London School of Hygiene and Tropical Medicine. Bualar, T. (2016) ‘What has gone wrong with inclusive education in Thailand?’. In Journal of Public Afairs 16(2): 156–161. COVID-19 DRM (Disability Rights Monitor) (2020) Disability Rights during the Pandemic. Retrieved on 21 July 2021 from www.internationaldisabilityalliance. org/sites/default/fles/disability_rights_during_the_pandemic_report_web_pdf_1.pdf De Beco, G. (2018) ‘The right to inclusive education: Why is there so much opposition to its implementation?’ In International Journal of Law in Context 14(3): 396–415. Devries, K.M., Kyegombe, N., Zuurmond, M., Parkes, J., Child, J., Walakira, E.J. and Naker, D. (2014) ‘Violence against primary school children with disabilities in Uganda: A cross-sectional study’. In BMC Public Health 14: 1017. DFID (Department for International Development) (2000) Disability, Poverty and Development. London: DFID. DFID (Department for International Development) (2010) Guidance Note: Education for Children with Disabilities – Improving Access and Quality. London: DFID. Dobransky, K. and Hargittai, E. (2016) ‘Unrealised potential: Exploring the digital divide’. In Poetics 15: 18–28. Dyson, A. (2004) ‘Inclusive education: A  global agenda?’. In Japanese Journal of Special Education 41(6): 613–625. Filmer, D. (2008) ‘Disability, poverty and schooling in developing countries: Results from 14 household surveys’. In The World Bank Economic Review 22(1): 141–163. Government of Ghana (2015) Inclusive Education Policy. Accra: Ministry of Education. Retrieved on 22 December  2021 from https://sapghana.com/data/documents/Inclusive-Education-Policy-ofcial-document.pdf Grech, S. (2014) ‘Disability, poverty and education: Perceived barriers and (dis)connections in rural Guatemala’. In Disability and the Global South 1(1): 128–152. Groce, N., Kembhavi, G., Wirz, S., Lang, R., Trani, J.-F. and Kett, M. (2011) Poverty and Disability: A  Critical Review of the Literature in Low and Middle-Income Countries. London: Leonard Cheshire Disability. Retrieved on 22 December 2021 from www.gov.uk/research-for-development-outputs/poverty-and-disability-acritical-review-of-the-literature-in-low-and-middle-income-countries Guernsey, K., Nicoli, M. and Ninio, A. (2006) Making Inclusion Operational. Washington: World Bank. Hadidi, M. and Khateeb, J. (2015) ‘Special education in Arab Countries: Current challenges’. In International Journal of Disability, Education and Development 62(5): 518–530. Hansen, A.M., Siame, M. and van der Veen, J. (2014) ‘A qualitative study: Barriers and support for participation for children with disabilities’. In African Journal of Disability Education and Development 3(1): 112–120. HCESC (House of Commons Education and Skills Committee) (2006) Special Educational Needs. Third Report of Session 2005–06, Volume 1. Retrieved on 10

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November  2021 from www.publications.parliament.uk/pa/cm200506/cmselect/ cmeduski/478/478i.pdf Heiman, T., Olenik-Shemesh, D. and Eden, S. (2015) ‘Cyberbullying involvement among students with ADHD: Relation to loneliness, self-efcacy and social support’. In European Journal of Special Needs Education 30(1): 15–29. Hwang, S., Kim, Y.S., Koh, Y-J. and Leventhal, B.L. (2018) ‘Autistic spectrum disorder and school bullying: Who is the victim? Who is the perpetrator?’. In Journal of Autism and Developmental Disorders 48(1): 225–238. Ingstad, B. (2007) ‘Seeing Disability and Human Rights in the Local Context: Botswana Revisited’. In Ingstad, B. and Whyte, S. (Eds.) Disability in Local and Global Worlds. Berkeley: University of California Press, 237–258. Jigyel, K., Miller, J., Mavropoulou, S. and Berman, J. (2020) ‘Benefts and concerns: Parents’ perceptions of inclusive schooling for children with special educational needs (SEN) in Bhutan’. In International Journal of Inclusive Education 24(10): 1064–1080. Jones, L., Bellis, M.A., Wood, S., Hughes, K., McCoy, E., Eckley, L., Bates, G., Mikton, C., Shakespeare, T. and Ofcer, A. (2012) ‘Prevalence and risk of violence against children with disabilities: A systematic review and meta-analysis of observational studies’. In The Lancet 380: 899–907. Kamenopoulou, L. (2018) ‘Inclusive education in the global South? A Columbian perspective: ‘When you look towards the past, you see children with disabilities, and if you look towards the future, what you see is diverse learners’. In Disability and the Global South 5(1): 1192–1214. Kowalski, R.M. and Fedina, C. (2011) ‘Cyber bullying in ADHD and Asperger syndrome populations’. In Research in Autistic Spectrum Disorders 5(3): 1201–1208. Kristensen, K., Omagor-Loican, M., Onen, N. and Okot, D. (2006) ‘Opportunities for inclusion?: The education of learners with special educational needs and disabilities at special schools in Uganda’. In British Journal of Special Education 33(3): 139–147. Le Fanu, G. (2014) ‘International development, disability and education: Towards a capabilities-focused discourse and praxis’. In International Journal of Education Development 38: 69–79. Lopez, V., Garcia-Quiroga, M., Benbenishty, R., Gonzalez, L., Squicciarini A.M. and Sanchez, P. (2020) ‘Sexual harassment by peers in Chilean schools’. In Child Abuse and Neglect 107: 104602. Lynch, P., McCall, S., Douglas, G. and Njoroge, M. (2011) ‘Inclusive educational practices in Kenya: Evidencing practice of itinerant teachers who work with children with visual impairment in local mainstream schools’. In International Journal of Educational Development 31(5): 478–488. Mathew, S.M. and Sujatha, R. (2018) ‘Efectiveness of child to child approach on practice of handwashing among school children in a selected school at Mangalore’. In Journal of Health and Allied Sciences NU 8(1): 15–21. Miles, S. (2007) ‘Inclusive Education’. In Barron, T. and Amerena, P. (Eds.) Disability and Inclusive Development. London: Leonard Cheshire International, 69–110. Miles, S., Beart, J. and Wapling, L. (2011) ‘Including deaf children in primary schools in Bushenyi, Uganda: A community-based initiative’. In Third World Quarterly 32(8): 1467–1477. Mizunoya, S., Mitra, S. and Yamasaki, I. (2018) ‘Disability and school attendance in 15 low- and middle-income countries’. In World Development 104: 388–403.

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Muthukrishna, N., Morojele, P., Naidoo, J. and D’amant, A. (2016) ‘Access to Education: Experiences from South Africa’. In Iriarte, E., McConkey, R. and Gilligan, R. (Eds.) Disability and Human Rights: Global Perspectives. London: Palgrave, 133–149. OECD (Organisation for Economic Co-operation and Development) (1999) Inclusive Education at Work: Students with Disabilities in Mainstream Schools. Paris: OECD. OECD (Organisation for Economic Co-operation and Development) (2012) CX3.1 Special Educational Needs (SEN). Paris: OECD. Retrieved on 23 December 2021 from www.oecd.org/els/family/50325299.pdf Oliver, M. and Sapey, R. (2006) Social Work with Disabled People (3rd Edition). Basingstoke: Macmillan. Opertti, R., Walker, Z. and Zhang, Y. (2014) ‘Inclusive Education: From Targeting Groups and Schools to Achieving Quality Education as the Core of EFA’. In The SAGE Handbook of Special Education. London: SAGE, 149–169. Opini, B. and Onditi, H. (2016). ‘Education for all and students with disabilities in Tanzanian primary schools: Challenges and successes’.  International Journal of Educational Studies 3(2): 65–76. Reiser, R. (2008) Implementing Inclusive Education: A  Commonwealth Guide to Implementing Article 24 of the UN Convention on the Rights of People with Disabilities. London: Commonwealth Secretariat. Rose, P. and Alcott, B. (2015) How can Education Systems Become Equitable by 2030? DFID think pieces – Learning and equity. Brighton: Health and Education Advice and Resource Team, Institute of Development Studies. Saebones, A.M., Bieler, R.B., Baboo, N., Banham, L., Singal, N., Howgego, C., McClain-Nhalpo, C.V., Riis-Hansen, T.C. and Dansie, G.A. (2015) Towards a disability inclusive education. Background paper for the Oslo Summit on Education for Development. Retrieved on 23 December  2021 from fle:///C:/Users/ DAVIDC~1/AppData/Local/Temp/OsloEducationSummit.pdf Schuelka, M. (2018) Implementing Inclusive Education. K4D Helpdesk Report. Birmingham: GSDRC. Schuelka, M. and Johnstone, C. (2012) ‘Global trends in meeting the educational rights of children with disabilities: From international institutions to local responses’. In Reconsidering development 2(2). Retrieved on 22 December 2021 from https://pubs.lib.umn.edu/index.php/reconsidering/article/view/573/567 Stubbs, S. (2008) Inclusive Education: Where There Are Few Resources. Oslo: The Atlas Alliance UIS (UNESCO Institute for Statistics) (2015) Fixing the Broken Promise of Education for All: Findings from the Global Initiative on Out of School Children. Montreal: UNESCO Institute for Statistics. UN (United Nations) (1948) Universal Declaration of Human Rights. Retrieved on 28 January 2022 from www.un.org/en/documents/udhr/ UN (United Nations) (1989) Convention on the Rights of the Child. Retrieved on 22 October 2021 from https://downloads.unicef.org.uk/wp-content/uploads/2010/05/ UNCRC_united_nations_convention_on_the_rights_of_the_child.pdf UN (United Nations) (2000) Millennium Declaration. Retrieved on 13 November 2021 from www.ohchr.org/EN/ProfessionalInterest/Pages/Millennium.aspx UN (United Nations) (2006) Convention on the Rights of Persons with Disabilities and Optional Protocol. Washington: United Nations.

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UN (United Nations) (2015) Transforming Our World: The 2030 Agenda for Sustainable Development. Washington: United Nations. UNDESA (United Nations Department of Economic and Social Afairs) (2018) Disability and Development Report: Realising the SDGs, by and for Persons with Disabilities. New York: United Nations. UNESCO (United Nations Educational, Scientifc and Cultural Organisation) (1990) World Declaration on Education for All and Framework for Action to Meet Basic Learning Needs: Meeting Basic Learning Needs. Adopted by the World Conference on Education for All in Jomtien, Thailand, 5–9 March. Paris: UNESCO. UNESCO (United Nations Educational, Scientifc and Cultural Organisation) (1994) The Salamanca Statement and Framework for Action on Special Needs Education. Adopted by the World Conference on Special Needs Education, Access and Quality in Salamanca, Spain, 7–10 June 1994. Paris: UNESCO. UNESCO (United Nations Educational, Scientifc and Cultural Organisation) (1996) Learning: The Treasure Within. Report to UNESCO of the International Commission on Education for the twenty-frst century. Paris: UNESCO. UNESCO (United Nations Educational, Scientifc and Cultural Organisation) (2000) The Dakar Framework for Action. Adopted by the World Education Forum, Dakar, Senegal, 26–28 April. Paris: UNESCO. UNESCO (United Nations Educational, Scientifc and Cultural Organisation) (2001) Open File on Inclusive Education: Support Materials for Managers and Administrators. Paris: UNESCO. UNESCO (United Nations Educational, Scientifc and Cultural Organisation) (2003) Overcoming Exclusion through Inclusive Approaches in Education: A Challenge and a Vision. Paris: UNESCO. UNESCO (United Nations Educational, Scientifc and Cultural Organisation) (2004a) An inclusive approach to EFA: UNESCO’s role. In Enabling Education Issue 8. Manchester: EENET. UNESCO (United Nations Educational, Scientifc and Cultural Organisation) (2004b) The Right to Education for Persons with Disabilities: Towards Inclusion. Paris: UNESCO. UNESCO (United Nations Educational, Scientifc and Cultural Organisation) (2014) Teaching and Learning: Achieving Equality for All. EFA Global Monitoring Report 2013/14. Paris: UNESCO. UNESCO (United Nations Educational, Scientifc and Cultural Organisation) (2015) Education for All 2000–2015: Achievements and Challenges. EFA Global Monitoring Report 2015. Paris: UNESCO. UNESCO (United Nations Educational, Scientifc and Cultural Organisation) (2019) Behind the Numbers: Ending School Violence and Bullying. Paris: UNESCO. UNESCO (United Nations Educational, Scientifc and Cultural Organisation) (2020) Inclusion and Education: All Means All. Global Education Monitoring Report. Paris: UNESCO. UNESCO (United Nations Educational, Scientifc and Cultural Organisation) (2021) Violence and Bullying in Educational Settings: The Experience of Children and Young People with Disabilities. Paris: UNESCO. UNESCO (United Nations Educational, Scientifc and Cultural Organisation) and French Ministry of Education, Youth and Sports (2020) International Conference on School Bullying: Recommendations by the Scientifc Committee on Preventing and Addressing School Bullying and Cyberbullying. Paris: UNESCO.

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UNICEF (United Nations International Children’s Emergency Fund) (2009) Child Friendly Schools Manual. New York: UNICEF. WFD (World Federation of the Deaf) (2007) Education Rights for Deaf Children: A  Policy Statement of the World Federation of the Deaf. Retrieved on 12 December  2021 from www.equalrightstrust.org/sites/default/fles/ertdocs// policy_child_ed.pdf WHO (World Health Organization) and World Bank (2011) World Report on Disability. Geneva: WHO. World Bank (2020) Pivoting to Inclusion: Leveraging Lessons from the COVID-19 Crisis for Learners with Disabilities. Washington: World Bank.

9

Pathways to economic participation

Economic participation can play a crucial role in lifting people out of poverty, as well as boosting self-esteem and creating a sense of purpose in life. Due to the existence of a wide range of barriers to training and employment, however, disabled people are far less likely to be economically active than the general working-age population (WHO and World Bank, 2011). In fact, an analysis of data from 91 countries across eight geographical regions shows that, between 2006 and 2016, the employment-to-population ratio for disabled people over the age of 15 was 36 per cent on average, as compared to 60 per cent for non-disabled people (UNDESA, 2018). Removing the barriers to economic participation is vital to reducing the dependence of many disabled people on welfare benefts and their extended families, and to facilitating their participation in the economic mainstream, thus helping to foster more just and inclusive societies. In the words of Paul Abberley (1999), a highly infuential disability activist and academic, the social exclusion of disabled people is ‘intimately related to our exclusion from the world of work’ (p. 5). Increasing the economic participation of disabled people can also bring signifcant economic benefts to society as a whole. Disabled people represent a sizeable pool of labour, which can be utilised to boost overall productivity. Furthermore, increased earnings enable disabled people to spend more, thus creating extra demand for goods and services produced by others (Powers, 2008). The overall economic impact may be even greater if family members are released from some of their caring responsibilities and able to return to the labour market themselves. Buckup (2009) uses data on disability prevalence and employment rates from ten low- and middleincome countries (LMICs) across Asia and Africa to calculate the economic losses resulting from the exclusion of disabled people from the labour market. Losses ranged from three per cent of gross domestic product (GDP) in Malawi and Vietnam to seven per cent of GDP in South Africa. These fndings should be treated with caution, given the questionable reliability of disability prevalence rates,1 but they do give some idea of the potentially signifcant macroeconomic costs of excluding disabled people from the world of work. DOI: 10.4324/9781003256038-9

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This chapter starts with a review of relevant international agreements, clearly establishing that disabled people have a right to economic participation on an equal basis with others. This is followed by a discussion around the various environmental factors that may determine the types of economic opportunities that are open to disabled people, within a given context, as well as infuencing the extent to which they are able to take advantage of these opportunities. The chapter then explores three pathways to economic participation – vocational skills development, waged employment and self-directed employment – identifying some of the barriers that hinder progress on each of these pathways and exploring various strategies designed to overcome them.

Relevant international agreements The international agreements discussed in this section reinforce the rights of disabled people to economic participation, as well as providing some guidance as to how governments can tackle discrimination in this area and support disabled people to be economically active. ILO Employment (Transition from War to Peace) Recommendation No.71, 1944. In 1944, the International Labour Organisation (ILO) declared that Disabled workers, whatever the origin of their disability, should be provided with full opportunities for rehabilitation, specialised vocational guidance, training and retraining, and employment on useful work. (ILO, 1944, General Principles (X)) This Recommendation, adopted at the end of the Second World War to promote employment creation during the transition from war to peace, went on to stipulate that wherever possible, disabled workers should receive training in company with able-bodied workers, under the same conditions and same pay. (Article X, 42(1)) While promoting the principles of inclusion and equality, the Recommendation also recognised the role of specialised training centres for ‘those disabled persons who require such special training’ (Article X, 42(5)). ILO Recommendation No. 59, 1955 This Recommendation built on the provisions of Recommendation No. 71 and places a strong emphasis on vocational training and equal pay. There was recognition of the rights of all disabled people to vocational training, as long as they have ‘reasonable prospects of securing and retaining suitable

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employment’ (ILO, 1955, Article II(2)), and the processes involved in providing vocational training were set out in detail. While primarily promoting mainstream training and employment opportunities, the Recommendation acknowledged that specialist facilities, such as sheltered workshops, may also be needed. This agreement formed a basis for national legislation and practice, in relation to the training and employment of disabled people, for the following 30 years (O’Reilly, 2007). ILO Convention No. 159, 1983 Prior to the CRPD, this was perhaps the most signifcant international agreement in relation to disability and economic participation, presenting a new set of international standards aimed at promoting equality of opportunity and the integration of disabled people into mainstream employment. Convention No. 159 also introduced the idea of ‘special positive measures’, which ‘shall not be regarded as discriminating against other workers’ (ILO, 1983, Article 4). This was an important statement as it paved the way for afrmative measures, such as reservations, quota schemes and employer incentives, to be included in national policies as they are in many countries today. ILO Code of Practice for Managing Disability in the Workplace, 2001 In 2001, following consultations with governments, employers’ organisations and workers’ organisations, the ILO produced its Code of Practice for Managing Disability in the Workplace (ILO, 2001). The Code provided detailed guidance on a wide range of employment-related issues, such as recruitment processes, workplace accessibility and adjustments, provision of training opportunities, career development, communication and awarenessraising. Guidance on workplace accessibility, for example, encompassed the provision of accessible toilets and washrooms, workplace instructions and equipment, as well as appropriate signage and emergency evacuation plans. While not a legally binding instrument, the Code serves as a good practice guide for employers throughout the world, supporting them to ‘utilise the skills and potential of people with disabilities within existing national conditions’ (Preface). While aimed primarily at employers, the Code was also intended to assist public sector agencies (in forming the necessary policies for promoting disability employment rights), workers’ organisations (in representing the interests of disabled workers) and disabled people’s organisations (DPOs) (in promoting employment opportunities for their members) (Section 1.3). UN Convention on the Rights of Persons with Disabilities (CRPD), 2006 Economic participation is an important theme within the CRPD. Article 27, titled ‘Work and Employment’, recognises that disabled people should have

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Pathways to economic participation the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities. (UN, 2006, Paragraph 1)

Article 27 goes on to outline several state responsibilities in this area, such as enabling disabled people to access vocational and continuing training, promoting self-employment and the development of cooperatives, employing disabled people in the public sector and promoting private sector employment opportunities. In relation to this latter responsibility, Article 27 specifcally calls for ‘appropriate policies and measures, which may include afrmative action programmes, incentives and other measures’ (Paragraph 1 (h)), thus reinforcing ILO Convention No. 159. While Article 27 is of most direct relevance, several other parts of the CRPD also emphasise the importance of economic participation. For example, Article 28 recognises the rights of disabled people to ‘an adequate standard of living for themselves and their families’ (Paragraph 1) while Article 8, on awareness-raising, calls on State Parties to promote recognition of the skills, merits and abilities of persons with disabilities, and of their contributions to the workplace and the labour market. (Paragraph 2(a)) 2030 Agenda for Sustainable Development Agenda 2030 (UN, 2015) refects a broad international consensus on the importance of inclusive and sustainable development, which is likely to exert a strong infuence on international development priorities for years to come. The eighth sustainable development goal (SDG), titled ‘Economic Growth and Decent Work’, together with the accompanying Target 8.5, is set out below:

SDG 8 Promote inclusive and sustainable growth, employment and decent work for all.

Target 8.5 By 2030, achieve full and productive employment and decent work for all women and men, including young people and persons with disabilities, and equal pay for work of equal value.

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Agenda 2030 is thus consistent with previous international agreements in framing the economic participation of disabled people as a rights issue, but perhaps goes further in emphasising the importance of decent work, which is viewed as crucial to the promotion of sustainable economic growth, poverty eradication and reducing the inequalities that often lead to disharmony and confict in the world. This concept, which had previously been promoted in several documents produced by the ILO, is explained in the following boxed text.

Decent work Decent work sums up the aspirations of people in their working lives. It involves opportunities for work that is productive and delivers a fair income, security in the workplace and social protection for families. Decent work means better prospects for personal development and social integration and freedom for people to express their concerns, organise and participate in the decisions that afect their lives. Source: ILO, 2008, p. 4.

The emphasis on decent work within Agenda 2030 implies that it is not enough to simply ensure that disabled people have equal access to work opportunities. Employers should be open to employing disabled people but should also listen to them and treat them fairly, ensuring that they have reasonable working conditions, fair remuneration and the same career development opportunities as other employees.

Environmental factors A wide range of environmental factors can potentially hinder or support the economic participation of disabled people. These include the workings of local and national institutions, social and cultural attitudes and beliefs, the characteristics of the local economy, the strength of the local disability sector and, perhaps most importantly, the level of family support. Institutional processes Relevant societal institutions include government authorities, fnancial institutions, the education system, the media and all organisations that employ people. Where these institutions work in ways that promote the

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economic inclusion of disabled people they are likely to create opportunities, while discriminatory ways of working will create barriers. The media, for example, may promote economic inclusion by highlighting the achievements of disabled people who have enjoyed career success, thus helping to establish positive role models, or it may reinforce stigma through illinformed and insensitive portrayals of disabled people that perpetuate negative perceptions (DSPD, 2016). Employers may harbour low expectations of disabled people and consciously or unconsciously fail to address the barriers to employment that they face, or they may promote economic inclusion by establishing non-discriminatory recruitment procedures, making their workplaces accessible and recognising the career potential of disabled employees. Attitudes and beliefs Societal attitudes and beliefs can also exert a strong infuence that may be negative or positive. Cultural and religious belief systems that foster negative perceptions of disabled people as needy recipients of charity typically fail to take account of their productive and creative capabilities. Such beliefs, often based on misconceptions around the causes of disability, tend to be internalised by disabled people themselves, lowering their own expectations and leading to an ‘accumulation of negative self-belief and lack of confdence that is inculcated from a lifetime of being denigrated’ (Albu, 2005, p. 11). Conversely, a growing awareness of the social causes of disability in many countries, reinforced by the CRPD, has engendered more positive identities of disabled people as citizens with equal rights. Governments around the world are increasingly translating this rights-based perspective into legislation, policies and programmes (Gargett et al., 2016), thus highlighting the need to combat discriminatory attitudes and provide opportunities for disabled people to fulfl their economic ambitions. Local economy Characteristics of the local economy, including the types of products and services that are in demand and the skills needed to produce or supply them, as well as the types of jobs that are available and the skills or qualifcations needed to perform them, will to some extent determine the types of economic opportunities open to disabled people. These characteristics are constantly changing, and opportunities often arise through new developments, such as the growth of new industries, the opening of new product markets or the creation of new services. Seasonal or temporary jobs may also provide short-term opportunities. One particularly important characteristic is the balance between the formal and informal sectors, concepts that are explained in Box 9.1.

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Box 9.1

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Formal and informal sectors

The formal sector of the economy, according to the ILO, consists of ‘regular, stable, and protected employment and of legally regulated enterprises’ (ILO, 2002a, p. 12). Formal enterprises may exist within the public and private sectors, with the public sector tending to dominate in most lowincome countries, especially in Africa (Coleridge, 2006). Formal sector workers are usually entitled to certain benefts, such as a minimum wage, written contracts, pensions, paid holidays and trade union membership. In countries of the Global South, however, formal sector jobs are ‘often more scarce and subject to intense competition’ (Powers, 2008, p. 7). The concept of an ‘informal sector’, which relates to small-scale, unregulated enterprises falling outside of the formal sector, was referred to in an ILO research project (ILO, 1972) on the conditions facing poor workers in Kenya. The study concluded that the relative ease of entry, low capital costs, small scale of operation and absence of formal education skills, which typically characterise the informal sector, made this the most realistic choice for many poor people. The concept was broadened following the 2002 International Labour Conference (ILO, 2002b), during which an expanded conceptual framework was presented. This new understanding encompassed informal enterprises, as before, but also included informal employment outside of informal enterprises, such as domestic workers and temporary or casual workers. While the idea of distinct formal and informal sectors is quite convenient conceptually, it is important to recognise that there are many grey areas and linkages between the two. Many formal sector jobs are low-waged, for example, and workers often move frequently between formal and informal jobs. A  report by the International Labour Organisation (ILO, 2002c), titled ‘Decent Work and the Informal Economy’, highlights the close relationship that often exists between the two sectors, concluding that ‘formal and informal enterprises and workers coexist along a continuum, with decent work defcits most serious at the bottom end, but also existing in some formal jobs’ (p. 4).

It is important to understand how the informal and formal sectors operate locally to enable disabled people to take advantage of the economic opportunities that each sector may ofer. Many economies of the Global South are characterised by strong informal sectors, particularly in terms of employment. One analysis, based on data from 185 countries, concluded that the informal sector accounts for 30–40 per cent of total economic activity in the poorest countries, and a higher share of employment. This

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Pathways to economic participation falls to something closer to 15 or 20 per cent in the richest quartile countries. (La Porta and Shleifer, 2014, p. 111)

Where a large informal sector exists, it is likely to be the main source of employment opportunities for many disabled people, especially those without formal qualifcations. This seems to be the case in Mongolia, for example, where employed disabled people are four times more likely than employed non-disabled people to be employed in the informal sector (ESCAP, 2015). Disability sector The strength of the local disability sector is another signifcant environmental factor. DPOs often run their own group income-generating projects, as well as supporting economic participation in other ways such as through the provision of fnancial services and business development support. Less directly, they can also play an important role in supporting economic participation by establishing networks with training providers and fnancial institutions, as well as promoting inclusion more generally through their advocacy work (Young et al., 2016). Disability-focused NGOs can play a similar role in supporting economic participation. For example, Leonard Cheshire has established livelihood resource centres in several countries across Asia and Africa which serve as an ‘Information Gateway’, providing advice and guidance to disabled people and their families, as well as working closely with training institutions, employers, government agencies, microfnance institutions and other stakeholders to facilitate the economic inclusion of disabled people. Family support Many disabled people rely heavily on the caregiving support of family members, who often make great sacrifces to support their well-being and ensure that their care needs are met. Family members are sometimes forced to withdraw from work or schooling due to caring responsibilities (Hunt, 2011) and may also experience social exclusion due to negative reactions from the wider family circle and community (McConkey, 2016). In Southern contexts, where formal social protection mechanisms are often weak or non-existent, families may even be a lifeline for disabled people, especially in poor rural communities (Grech, 2019). In terms of supporting economic participation, family members can be a vital source of both emotional and practical support. This can be seen from the case of David Luyomba, who became an accomplished vet and development worker in Uganda despite being disabled from the age of three due to polio (Coleridge, 2016).2 Luyomba attributes his success to his mother, who believed in him and was determined that he should get a good education. She carried him to primary school when he was a young child and later saved hard to pay for his secondary schooling. While family members often play a critical role in supporting the social inclusion and economic empowerment of disabled people, it cannot be

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assumed that the infuence of families will always be positive in this respect. Surveys conducted in Cameroon, Ethiopia, Senegal, Uganda and Zambia revealed that 38 per cent of caregivers reported hiding their disabled children away and excluding them from social activities to protect them from negative perceptions and stigma (DSPD, 2016). Furthermore, as Ransom (2010) observes, parents sometimes discourage younger disabled people from developing skills at home due to overprotective attitudes (often arising from internalised stigma) and a failure to recognise their potential to learn and make a useful contribution, both at home and in wider society. In Ethiopia, for example, a study based on interviews with 15 disabled women revealed how low self-esteem and confdence had sometimes arisen through interactions with family members, even where they had the best of intentions, as revealed through the testimony of one participant.

Overprotective attitudes within families Because people tell me, ‘You cannot do it’. ‘You cannot do it’. I started to think myself that I cannot do it even though my disability is only that I cannot hear. I told my mother that I want to fry Injera (local bread), but she said that I cannot hear the sound when the machine is on. Mother did not think anything bad about me. She just thought that I should not get any more injury as I already have this disability. My mother loves me very much. She just wants that nothing bad will happen to me. Source: Katsui and Mojtahedi, 2015, p. 567.

Refection exercise 9.1 Make a list of the environmental factors that are likely to hinder or help to facilitate the economic participation of disabled people within a country or community that you are familiar with. How might these factors vary between urban and rural areas?

Vocational skills development Vocational skills development programmes can enable trainees to acquire the skills and personal attributes that support economic participation. However, disabled people are often faced with a range of barriers to accessing vocational training. Many have been denied access to basic education (UNICEF, 2014), so they may fail to meet the entry requirements for

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mainstream training courses. Training institutions may be distant or physically inaccessible, and courses may not be designed in a way that is fexible enough to meet the specifc needs of disabled people. Attitudinal barriers within families, training institutions and the wider community, as well as a lack of confdence and low expectations among disabled people themselves, may also hinder vocational skills development. A wide range of vocational skills are essential to many types of work that disabled people engage in. Before examining diferent approaches to vocational skills development, it is worth considering the various types of skills that may actually be required, in a given context, to support economic participation. Four key skill areas are outlined in Box 9.2.

Box 9.2

Vocational skill types

Basic skills Many disabled people lack basic skills, such as numeracy and literacy, due to past exclusion from education. While years of missed schooling cannot be easily compensated for, some basic skills training aimed at improving reading, writing and arithmetic can provide a signifcant boost to the employability or business potential of a trainee.

Personal or life skills Personal or life skills training may include guidance on specifc tasks, such as writing CVs, applying for jobs and succeeding at interviews, or more general guidance on developing the personal attributes that are necessary to succeed in business or employment. These may include, for example, timekeeping and time management skills, reliability, fexibility, interpersonal skills, team-working and the ability to take responsibility, think creatively and solve problems. The incorporation of a life skills component within a training programme can help to build self-confdence and self-esteem, thus enabling trainees to present themselves more positively.

Technical skills Technical skills enable people to perform specifc tasks competently. These may include skills needed in manual occupations, such as farming, carpentry, tailoring, construction, plumbing and electrical work, as well as service occupations, such as bicycle or vehicle repair, hairdressing, sales, marketing and secretarial work. Virtually, all types of work require some technical skills and, with increased dependency on technology, the need for relevant training is likely to increase in the future.

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Entrepreneurial skills Entrepreneurial or business skills can play a vital role in supporting disabled people to start new enterprises or enhancing the proftability of existing enterprises. The specifc skills required by an individual will depend on the type of business they are interested in and prior business experience, but are likely to include business planning, organisational skills, record-keeping, marketing, risk assessment, problem-solving and making use of fnancial services.

Segregated approaches Historically, vocational training for disabled people has tended to be based in segregated institutions, such as vocational training centres and sheltered workshops. While such schemes may provide some disabled people with their best chance of being productive and earning income (Powers, 2008), they have attracted much criticism for reinforcing the charity model ethos and isolation of disabled people from the rest of society (WHO and World Bank, 2011). They have also been criticised for failing to provide the accredited learning or employability skills that are necessary for participation in the labour market and for reinforcing stereotypical or outdated occupational roles, often quite menial in nature, such as carpentry for deaf trainees or basket making for blind trainees (Ransom, 2010). A further consideration is that providing training within segregated settings is likely to be less cost-efective than within inclusive mainstream settings, giving rise to concerns around sustainability and the potential for scaling up (Mont, 2013). However, there are some positive examples of segregated training initiatives that have managed to avoid many of these pitfalls and serve as a valuable stepping stone to mainstream inclusion. The scheme described in Case Study 9.1 has achieved considerable success, in terms of promoting economic participation, due to its provision

Case Study 9.1: Technical Training Institute and Computer Training Centre in Bengaluru The Technical Training Institute (TTI) in Bengaluru, run by the National Association for the Blind (NAB) and established in 1982, is a specialist training centre providing courses in general mechanics to trainees (continued)

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with visual impairment. Courses last for two years, leading to Government Trade Certifcates, and trainees are also provided with basic skills and mobility training to supplement the technical skills. The NAB site also offers hostel accommodation and job placement services and has recently opened the Computer Training Centre to take advantage of opportunities arising within Bengaluru’s booming information technology sector. The TTI has been designed to replicate a mainstream workplace. Trainees are taught skills that are required by modern-day industry and trained on regular industrial machines ftted with simple adaptations for training purposes, so that they will be able to adapt to ordinary workplaces. For example, various parts of a standard pillar drill machine were connected using pieces of string to a braille information board explaining how each part should be used. The Computer Training Centre is similarly geared to the requirements of mainstream employment, with students being trained on opensource software so that employers would not need to purchase software licences to accommodate them. According to one trainee, regular visits from company representatives had helped to instil confdence that their skills were needed in the commercial world. On graduation, trainees from both centres are referred to the job placement service, as they make the transition from training to mainstream employment. Once they have been successfully placed in a job, employees receive a three-day orientation programme and regular follow-up visits, designed to resolve any diffculties arising in the early months of employment and to foster positive relationships between the NAB and local employers. According to the NAB’s Chief Executive Offcer, this process of building rapport was vital to the ongoing success of the scheme. The TTI Superintendent estimated that around 90 per cent of the trainee mechanics were successful in fnding employment, usually within local factories. Similarly, the Head of the Computer Training Centre reported that demand for computer graduates was extremely high within both the corporate and government sectors. Source: Adapted from Cobley (2013a, pp. 447–448) and research notes.

of accredited training courses and close links to local employers. The approach of preparing trainees to adapt to the requirements of regular workplaces, described by one staf member as ‘meeting society halfway’, may seem to be at odds with the demands of many social model advocates

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for society itself to adapt to the needs of disabled people rather than the other way around. In resource-poor settings, however, where mainstream employment opportunities are often extremely scarce, this is perhaps a realistic strategy for maximising the employment prospects of disabled trainees. Segregated schemes can be of great value to disabled people who, due to the severity of their impairments, are likely to face exclusion from even the most inclusive of mainstream vocational training programmes and have little realistic prospect of mainstream employment. This is because even those with the most profound and complex impairments can make a valuable contribution to household livelihood strategies if they are supported to develop skills that reduce their dependence on others. Case Study 9.2 describes a training project in Kenya that recognises the potential of deaf–blind trainees to make just such a contribution and even to generate income for their families.

Case Study 9.2: Brian Resource Centre in Nairobi The Brian Resource Centre provides training on small-scale agribusiness and resource management skills to a small group of young deaf–blind trainees. The centre is located at the Nairobi home of the scheme’s founder, Joseph Shiroko, who set up the project in 2006 after becoming frustrated by the lack of local facilities for Brian, his deaf– blind son. The project trains students to utilise the natural resources that are readily available to them to generate income through various agri-business activities, from kitchen gardens to animal husbandry. Families are encouraged to visit, and even undergo training themselves so that they can see how the skills being taught can be put to productive use, and how deaf–blind people can, with appropriate support, make a valuable contribution to family livelihood strategies. As Shiroko explained: The family is a ‘key institution’ in Kenya. When students graduate, we visit the families every three months to monitor progress, and to ensure that former trainees are using their skills. Without the support of families, the project would be doomed to failure. For example, a sewing machine given to a scheme graduate could be sold by the family for a quick proft. (continued)

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The centre provides two-year training programmes for up to four trainees at a time. Of the 12 that had completed the programme since the project’s inception, three were employed at the centre as instructors. The others, according to Shiroko, had received business start-up kits and were contributing to family businesses or running their own incomegenerating projects. This is a largely self-suffcient scheme, with training fees supplemented by a range of income-generating activities, such as rabbit breeding and the sale of charcoal bricks produced on-site. The government also provides some support, by seconding an agriculture extension worker to advise on the innovative farming and conservation methods in use, and a locally based NGO had provided business start-up kits. Although small and segregated, this scheme demonstrates how it is possible to support people with multi-sensory impairments to engage in sustainable income-generating activities and to make a productive contribution to their households, and even their communities, within the Kenyan context. One interviewee, an NGO community worker who regularly visited the Centre, felt that key strengths of the project were its ability to adapt and evolve to survive and the strong commitment from families, who ‘even push the founder to do more!’ Source: Adapted from Cobley, 2012, p. 377, and research notes.

Mainstream approaches The increasingly widespread adoption of a rights-based perspective on disability has led to a gradual transition from segregated institutions to the inclusion of disabled people within mainstream training programmes. This transition has been much slower in many countries of the Global South, however, for reasons such as the physical inaccessibility of training centres, distant or inconvenient location of training, courses which are not relevant, inadequate transportation, unavailability and/or cost of child care, little fexibility in course design or delivery. (O’Reilly, 2007, p. 84) These are all barriers that can be overcome, however, as has been shown by the success of the Zero Project in Mozambique. Through this project, training centres have been equipped with accessible furnishings and adaptations, such as lower door knobs and light switches for trainees using

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wheelchairs, while student hostels have been adapted and two new accessible hostels have been constructed (Zero Project, 2018). This scheme has enabled 190 young disabled people to enrol in mainstream vocational training programmes since 2015, with 167 of them having graduated by 2018. Apprenticeships One way of ensuring that the content of training matches the needs of the local economy is to involve employers directly in the provision of training opportunities through apprenticeships. While the quality of such training may vary, many trainers have vast experience in their particular trades and the skills acquired are likely to be highly marketable. Trainees are also likely to gain valuable work experience, often involving direct contact with the general public. Additionally, trainers may be able to provide long-term job opportunities themselves or at least to provide work recommendations on completion of training. Albu (2005) reports on an enterprise-based scheme, involving 103 training placements for young disabled people, implemented between 2001 and 2004 in a confict-torn area of Uganda. Only 60 of the training placements were completed, but at least 38 of those completing placements were already productively employed by 2004, including several that had been taken on by the employers who had provided their placements.3 One criticism of apprenticeship training is that informal training does not always lead to formal accreditation (Coleridge, 2007), although this weakness can be overcome if college placements are incorporated into apprenticeship schemes. This is the case in Ethiopia, for example, where young disabled people have been included in the national apprenticeship system since 2012 (ILO, 2018). This scheme ofers apprenticeships that are 70 per cent company-based and 30 per cent school-based, lasting between one and four years and leading to recognised certifcation. An important element of this national programme is that ‘each regional training agency and training college has a designated focal point for disability inclusion and needs to reserve a specifc share of their budget for reasonable accommodation purposes’ (p.  4). Further measures to support disability inclusion as part of this programme include the provision of specialised support staf who advise companies and colleges on how to adapt their workplaces, facilities and curricula and can even accompany disabled trainees to work during the initial stages of their apprenticeships.

Waged employment Obtaining waged employment can present huge challenges for many disabled people, especially in Southern contexts where formal jobs are often relatively scarce (Powers, 2008). Even those with appropriate qualifcations

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are likely to encounter a wide range of barriers, including discriminatory recruitment procedures, inaccessible workplaces and transport difculties, as well as negative attitudes among employers, who may harbour doubts around their productive capabilities. Such misconceptions are often reinforced by a lack of knowledge around the kind of adaptations that could make their workplaces more accessible and help to facilitate the productive employment of disabled people (WHO and World Bank, 2011). However, the increased international recognition of disability rights, the spread of pro-disability employment legislation (including afrmative action measures), the rise of corporate social responsibility and the implementation of innovative strategies designed to support disabled people into work have helped to create a more level playing feld. Legislation and afrmative action There is a growing international consensus that disabled people should not be excluded from waged employment, a trend that is clearly refected in the international agreements reviewed earlier in this chapter. Many countries have responded to this by introducing or strengthening disability-specifc employment legislation. In fact, more than 60 per cent of UN Member States now have legislative provisions in place explicitly prohibiting discrimination against disabled people in the area of employment and guaranteeing equal pay (WPAC, 2016). Such legislation often includes afrmative measures designed to increase the labour market participation rates of disabled people, such as employment reservations or quotas schemes, usually in the public sector. The ILO (2019) reports that over 100 countries now have employment quotas in place, varying in terms of the percentage obligation, the size of company covered, whether they apply to public and private sectors, how compliance is monitored and what measures apply in cases of non-compliance. (p. III) Legislation can also include a wide range of other relevant obligations and incentives. In Uganda, for example, the 2020 Persons with Disabilities Act 2020 (Government of Uganda, 2020) requires employers to interview all suitably qualifed disabled job applicants and make reasonable accommodations for them (both at the interview stage and within the workplace). Also, the Act allows for an annual tax reduction of up to 10 per cent for private employers who employ disabled people. In terms of the impact of legislation, the picture is not so rosy. One signifcant barrier to implementation is the lack of adequate guidance on how the principle of ‘reasonable accommodation’ should be interpreted and put into practice within the workplace (UNDESA, 2018). It has also been reported that many disabled people feel that legislation either is not mandatory

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or has inefective enforcement mechanisms and inadequate penalties for non-compliance (Dube et al., 2005). Even where signifcant penalties are in place they may not ensure genuine compliance. In Russia, for example, where there is a long history of disability employment quotas, supported by fnes for non-compliance, these measures have frequently been abused by employers (Sargeant et al., 2018). The authors of this study note that many employers are opposed to the system and in some cases they just pay minimum wages to disabled employees to avoid the payment of fnes but do not allow them to carry out any duties. In China, where employment reserves of 1.5 per cent for disabled people have been established in both the public and private sectors, data from 18 cities has shown that the actual employment rate of disabled persons in the public sector is just 0.03 per cent (Liao, 2020). In the private sector, many employers prefer to pay a penalty levy as an alternative to hiring disabled people, while Liao also presents anecdotal evidence to suggest that some frms even obtain fake disability certifcates for employees to avoid payment of the levy. Non-obligatory measures While there is clearly a need for anti-discrimination legislation to be implemented more efectively to increase labour market participation rates among disabled people, there may also be a role for non-obligatory measures, based on persuasion or self-regulation, to be used in addition to legislation (O’Reilly, 2007). For example, government agencies, employer associations or disability organisations can help to promote disability-inclusive employment through awareness-raising activities or even award schemes that recognise outstanding contributions in this area. With a growing awareness of corporate social responsibility placing increased pressure on multinationals to adopt more ethical recruitment practices, such schemes could play a valuable role in demonstrating that companies have been proactive in recruiting disabled people and supporting them to develop their careers. In India, for example, the Mindtree Helen Keller Award Scheme, originally introduced in 1999 to recognise individuals and companies that had shown active commitment to promoting disability-inclusive employment, has now become the most prestigious Indian benchmark for honouring people and organisations that have worked towards a barrier-free, non-discriminatory and inclusive India. (NCPEDP, 2020, p. 5) Business case While the desire to promote a positive company image may be prompting some companies to employ more disabled people, there is also encouraging

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evidence to suggest that others are now starting to recognise a business case for including disabled people in the workplace. In Canada, for example, a cost–beneft analysis of data from a food services company found that disabled employees ofered net value to the employer due to their averageto-above-average work performance and lower turnover costs, as compared with the entire workforce (Fisher and Connelly, 2020). In India, a luxury hotel chain called ITC-Welcomgroup, which has employed over 300 disabled people,4 has produced an excellent Disability Handbook for Industry, which claims that disabled employees ‘tend to have better attendance records, stay with employers longer and have fewer accidents at work’ (ITC-Welcomgroup, undated, Section  1.2). The handbook moreover observes the positive impact on staf morale when employers are seen to promote equal opportunities and provides a wealth of advice for employers on how to accommodate disabled employees and support them to reach their full potential. Job placement In many countries, disability-inclusive job placement schemes have been incorporated into public employment services (UNDESA, 2018). Such schemes typically aim to match jobseekers with suitable vacancies, support employers to make workplace adjustments as necessary and, in some cases, provide job orientation and counselling to new disabled employees during the critical early months of a new job placement. Job placement schemes may also be attached to vocational training schemes, as illustrated by Case Study 9.1, or run by disability-focused NGOs as stand-alone schemes. Job fairs, organised specifcally for disabled jobseekers, can be an efective way of enabling candidates to meet with a large number of potential employers who are likely to have a positive attitude towards disability employment by virtue of their attendance. Several disability-focused organisations in India have adopted this innovative strategy in recent years, including the Ability Foundation in Chennai, as described in Case Study 9.3.

Case Study 9.3: Employability Jobs Fairs in Chennai Employability Jobs Fairs started in 2004 and have become increasingly popular, now attracting up to 75 companies and 800 graduate-level candidates from across India each year. Participants at a staff focus group discussion estimated that around seven per cent of these candidates obtain jobs. To reach out to candidates in other states, who often travel

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huge distances to attend, the Foundation recently organised additional jobs fairs in the northern cities of Delhi and Guwahati. The Deputy Director explained how the fairs work: They last for two days, with the frst day involving screening, written tests and job matching, which helps to ensure that candidates only apply for those jobs that interest them and match their abilities. The aim is to set a high benchmark, so that employers know that they will recruit high quality candidates and candidates know that they have a good chance of success. One benefciary attended the 2008 Jobs Fair and was selected for a job by Standard Chartered Bank, for whom he now works as a Customer Services Executive in Jaipur. As with many of the scheme benefciaries who were interviewed for this study, he is grateful for the opportunity to lead an independent life and would like to help others to do the same. His ambition is to set up a rural organisation in Rajasthan, providing IT training to disabled people with little or no education. Source: Cobley, 2013b, pp. 287–288.

While the Chennai Jobs Fairs have achieved notable success, this is partly due to their focus on graduate-level candidates, which efectively excludes the vast majority of disabled people. However, supporting those with appropriate academic qualifcations to forge successful careers is one way of establishing role models who can challenge discriminatory attitudes and demonstrate that disabled people can succeed at the highest levels.

Self-directed employment The term ‘self-directed employment’ refers to individuals running their own businesses, either individually or in collaboration with others (Neufeldt, 1995). As well as business ventures run by disabled individuals, this may encompass family businesses, worker cooperatives or group incomegenerating activities, such as those that are often set up by DPOs and selfhelp groups, and is thus a broader concept than self-employment. While self-directed employment may not ofer the security and stability of waged employment, it does ofer the fexibility of being able to work at one’s own pace, which may well suit many disabled people. Business ventures of this type are most likely to operate in the informal sector, at least initially, and hence may provide some of the best employment opportunities for disabled

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people in countries where the informal sector dominates (Coleridge, 2007). This claim is supported by an analysis of data from 19 countries showing that, on average, 62 per cent of employed disabled people were selfemployed as compared with 53 per cent of employed non-disabled people, with wider gaps for the LMICs within the sample (UNDESA, 2018). Selfdirected employment is by no means an easy option though. The business world can be fercely competitive, and many enterprises fail before they even get of the ground. Successful entrepreneurs require confdence and self-belief, qualities that many disabled people lack due to the infuence of negative community attitudes, which are often internalised, and a lack of exposure to the realities of working in a competitive environment. Overcoming the fear of failure and taking a step out of one’s comfort zone may be the frst hurdle that needs to be faced. Being one’s own boss can be a liberating experience but can also be quite isolating as many entrepreneurs work from home. The support and encouragement of family members and friends can reduce that feeling of isolation, as well as help to instil the confdence needed to overcome the inevitable business setbacks that will occur from time to time. Practical support may also be of vital importance, since disabled people may not be able to carry out every task associated with a business themselves. Family members and friends can help to plug gaps in the supply chain by carrying out these tasks, and it may sometimes be possible to form business linkages between disabled entrepreneurs to fll these gaps. Moodie (2010) notes the potential value of this type of linkage, ofering the example of a disabled entrepreneur in South Africa who started a laundry business and was then able to link up with another disabled entrepreneur, who used his car to collect and deliver the laundry for her. Access to capital Disabled people often lack qualifcations, business experience and fnancial assets and thus may fail to meet the lending criteria set by fnancial institutions. Even micro-fnance institutions, which provide fnancial services designed to support micro-enterprises and poor families, often fail to reach disabled people (Martinelli and Mersland, 2010). In fact, a multi-country survey of over 100 microfnance providers found that, for most of them, disabled people made up less than 0.5 per cent of their clients (Handicap International, 2006). Cramm and Finkenfugel (2008), in their analysis of the exclusion of disabled people from microcredit in Africa and Asia, describe how microcredit programmes often demand entry fees, collateral and prior business experience, all of which tend to exclude the poorest members of society, among whom disabled people are disproportionately represented. Also, they provide evidence to suggest that the perceived risks of providing loans to disabled people are often infated by negative perceptions among loan or credit ofcers, some of whom feel that disabled clients are ‘problematic and will create increased work burden’ (p. 3).

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Where disabled entrepreneurs have been able to access microfnance loans, they have often proved to be more creditworthy than is sometimes assumed. In Nicaragua, for example, where a project called ProMujer involved the disbursement of loans at market rates through a village bank to both disabled and non-disabled women, disabled borrowers proved to be just as reliable as non-disabled borrowers in repaying the loans (Mont, 2013). Given the barriers to microfnance, however, it is perhaps not surprising that many disabled entrepreneurs rely on their own personal savings and personal support networks to fund new businesses. This was illustrated by a survey of 841 disabled entrepreneurs in Uganda, which revealed that the vast majority of respondents had either used their own personal assets or relied on family and friends to make their initial business investments (Beisland and Mersland, 2012). Interestingly, however, this survey revealed that 89 per cent of the entrepreneurs had made use of at least one type of microfnance service, usually once they were economically active. Many of them had managed to access less formal fnancial institutions, such as Rotating Savings and Credit Associations (ROSCAs), which are commonplace in Uganda. Group enterprises Group enterprises often have a greater chance of success than individual ventures, as they are able to tap into a diverse range of skills, attributes and resources. Also, they may fnd it easier to access business fnance, since they are able to pool resources to build capital. Another advantage of group enterprises is that they can draw on the strength of peer support that often exists between members. In the South Indian State of Tamil Nadu, for example, numerous self-help groups formed by disabled people have launched successful business enterprises, often with the support of government agencies and locally based NGOs that have provided entrepreneurial skills training and helped to facilitate links with fnancial institutions (Cobley, 2013a). The value of peer support was highlighted during an interview conducted with a bank manager, based in the Nagapattinam District, who had approved loans to several local self-help groups.5 He explained that peer pressure within the groups creates solidarity, which leads to good repayment rates. The disability self-help groups are now seen as a good banking investment. (p. 450) The potential of disabled people to develop successful group business ventures has also been recognised in the Philippines, where the 1999 Economic Independence of Disabled Persons Act requires the government to procure 10 per cent of its furniture requirements from business cooperatives comprising disabled people. One such venture is described in Case Study 9.4.

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Case Study 9.4: Business cooperative in the Philippines In the rural district of Santa Fe, members of a DPO were engaged in the production of hollow blocks and school furniture. Many of the workers lived on-site through the week, returning to their homes at weekends. The cooperative beneftted from the government’s pro-disability procurement policy, which virtually guaranteed a continuing stream of furniture orders. Three members of the cooperative were interviewed, and all of them spoke of their pride at being able to work for a living and support their families rather than relying on government or NGO ‘handouts’. Also, they expressed a strong preference for working alongside other disabled workers within the communal setting. As one member put it, ‘here we look out for each other and nobody looks down on us’. The project had received various forms of business support from two locally based NGOs, including the provision of transport for delivering furniture and enabling workers to access local medical services. A representative from one of these NGOs highlighted the importance of adopting a twin-track approach to promoting the economic participation of disabled people in a resource-poor setting, by campaigning for mainstream inclusion while simultaneously supporting more focused initiatives such as the Santa Fe cooperative. As he explained: We are striving for full inclusion in the mainstream, but this will take a long time. In the meantime, we recognise that, for some, their best prospects of employment are within the cooperatives. Source: Adapted from Cobley, 2015.

Business development support (BDS) BDS services, such as those provided to the self-help groups in South India and the Santa Fe cooperative in the Philippines, may be designed to support both existing and potential entrepreneurs, either individually or collectively. Potential entrepreneurs can be supported to draw on their own interests, capabilities, knowledge, personal attributes and social contacts to develop a viable business plan, which is usually the starting point for a new enterprise. Even if a formal business plan is not required, it is important to have a clear idea of what is required for a business to succeed. Those already engaged in business may beneft from BDS services designed to support them in strengthening and further developing their enterprises.

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BDS services can play an important role in bringing together the various forms of support that disabled entrepreneurs may need to give them the best chance of succeeding in business. It may sometimes be necessary to address medical rehabilitation needs, for example, to ensure that a disabled person is ft and well enough to beneft fully from a training course or to engage in business activities. The need for a holistic approach was highlighted by an international comparative study on economic inclusion conducted by Handicap International (2006), based on feld visits to seven LMICs in Asia and East Africa. The study report concluded that successful strategies for promoting self-employment among disabled people require ‘complementary activities in multiple sectors’ (p. 24). As well as developing business skills and facilitating access to fnancial services, these activities included physical rehabilitation, building self-esteem, raising disability awareness and advocacy services. The most cost-efective way of providing such comprehensive support, the report concludes, is to establish partnerships between organisations working in diferent domains. BDS services should therefore aim to foster links between the various community stakeholders who could potentially support disabled entrepreneurs to develop their businesses.

Refection exercise 9.2 Make a list of the organisations, agencies and individuals, within a city, town or rural district that you are familiar with, that may be a potential source of support for a disabled entrepreneur. How can a disability service provider engage with these stakeholders efectively to provide a comprehensive, coordinated and cost-efective package of BDS services to disabled entrepreneurs?

Summary of key points •

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Economic participation can play a vital role in reducing poverty among disabled people and their families, as well as promoting more just and inclusive societies. Supporting disabled people to be economically active can also have signifcant economic benefts for society as a whole. A wide range of environmental factors exert an infuence on the range and types of economic opportunities that are available to disabled people, as well as the extent to which they are able to take advantage of these opportunities. These factors include institutional processes, attitudes and beliefs, the characteristics of the local economy, the strength of the disability sector and the level of family support. Vocational training strategies should aim to match the interests and abilities of individual trainees to the needs and characteristics of the local

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Pathways to economic participation market. They should not be limited by preconceived ideas and assumptions about the types of work that disabled people can or should do. Despite increased international awareness of disability rights and the spread of pro-disability employment legislation, disabled people are still grossly under-represented in waged employment. Opportunities do exist, however, and many disabled people value the stability, security and career development prospects that waged employment can ofer. Innovative strategies, such as job placement schemes and employer award schemes, can help to ensure that more disabled job seekers are able to take advantage of these opportunities. Self-directed employment represents the most realistic route to economic participation for many disabled people. BDS services should aim to support disabled entrepreneurs, both individually and collectively, to achieve their business ambitions, building on the personal resources that they already have and bringing together the various forms of support that may be necessary to enable them to succeed.

Discussion questions 1) Given the drive towards mainstream inclusion and participation, reinforced by the CRPD, what do you see as the future role, if any, of segregated training institutions and sheltered workshops? 2) How can training providers ensure that the content of vocational skills training programmes for disabled people refects the career aspirations of trainees themselves and is matched to the requirements of the local economy? 3) How can mainstream employers be supported to make their workplaces and working practices more disability-inclusive?

Suggested further reading Albu, M. (2005) ‘Economic Empowerment of Disabled People: Lessons from Northern Uganda About Developing the Market for Enterprise-based Skills Development Services’. DFID APT Enterprise Development: Project Report. Retrieved on 28 January 2022 from www.value-chains.org/ dyn/bds/docs/463/APT%20Uganda%20Disabled%20People%202005.pdf Coleridge, P. (2016) ‘Access to Livelihoods’. In Iriarte, E., McConkey, R. and Gilligan, R. (Eds.) Disability and Human Rights: Global Perspectives. London: Palgrave, 189–204.

Notes 1 See Chapter  2 for a discussion around the difculties in measuring disability prevalence. 2 See Suggested further reading.

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3 See Suggested further reading. 4 Research interview conducted with ITC’s General Manager on 18 February 2011. 5 See Case Study 5.2, Chapter 5, for a description of the self-help group movement in South India.

References Abberley, P. (1999) The Signifcance of Work for the Citizenship of Disabled People. Paper presented at University College Dublin on April 15th, 1999. Retrieved on 21 January  2022 from https://disability-studies.leeds.ac.uk/wp-content/uploads/ sites/40/library/Abberley-sigofwork.pdf Albu, M. (2005) ‘Economic Empowerment of Disabled People: Lessons from Northern Uganda About Developing the Market for Enterprise-based Skills Development Services’. DFID APT Enterprise Development: Project Report. Retrieved on 28 January 2022 from www.value-chains.org/dyn/bds/docs/463/APT%20Uganda% 20Disabled%20People%202005.pdf Beisland, L.A. and Mersland, R. (2012) ‘The use of microfnance services among economically active disabled persons: Evidence from Uganda’. In Journal of International Development 24(51): 569–583. Buckup, S. (2009) The Price of Exclusion: The Socio Economic Consequences of Excluding People with Disabilities from the World of Work. ILO Working Paper No. 43. Geneva: ILO. Cobley, D.S. (2012) ‘Towards economic empowerment: Segregation versus inclusion in the Kenyan context’. In Disability and Society 27(3): 371–384. Cobley, D.S. (2013a) ‘Towards economic participation: Examining the impact of the Convention on the Rights of Persons with Disabilities in India’. In Disability and Society 28(4): 441–455. Cobley, D.S. (2013b) Disability and Economic Empowerment in Kenya and India. Saarbrucken: Lambert Academic Publishing Ltd. Cobley, D.S. (2015) ‘Typhoon Haiyan one year on: Disability, poverty and participation in The Philippines’. In Disability and the Global South 2(3): 686–707. Coleridge, P. (2006) ‘Disabled people and economic empowerment’. In Behinderung and Dritte Welt: Disability and International Development 2: 4–10. Coleridge, P. (2007) ‘Economic empowerment’. In Barron, T. and Amerena, P. (Eds.) Disability and Inclusive Development. London: Leonard Cheshire International, 111–154. Coleridge, P. (2016) ‘Access to Livelihoods’. In Iriarte, E., McConkey, R. and Gilligan, R. (Eds.) Disability and Human Rights: Global Perspectives. London: Palgrave, 189–204. Cramm, J. and Finkenfugel, H. (2008) ‘Exclusion of disabled people from microcredit in Africa and Asia: A literature study’. In Asia Pacifc Rehabilitation Journal 19(2): 15–33. DSPD (Division for Social Policy Development) (2016) Toolkit on Disability for Africa: Culture, Beliefs and Disability. New York: United Nations. Retrieved on 21 December  2021 from www.un.org/esa/socdev/documents/disability/Toolkit/ Cultures-Beliefs-Disability.pdf Dube, A., Hirst, R., Light, R. and Malinga, J. (2005) Promoting Inclusion? Disabled People, Legislation and Public Policy. DFID Research Paper. London: DFID.

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ESCAP (Economic and Social Commission for Asia and the Pacifc) (2012) Disability at a Glance 2015: Strengthening Employment Prospects for Persons with Disabilities in Asia and the Pacifc. Bangkok: United Nations. Fisher, S.L. and Connelly, C.E. (2020) ‘Building the “business case” for hiring people with disabilities: A fnancial cost-beneft analysis methodology and example’. In Canadian Journal of Disability Studies 9(4): 71–88. Gargett, A., Barton, R., Llewellyn, G. Tsaputra, A., Soe, S. and Tawake, S. (2016) ‘Global Cultures and Understandings of Disability’. In Iriarte, E., McConkey, R. and Gilligan, R. (Eds.) Disability and Human Rights: Global Perspectives. London: Palgrave, 68–80. Government of Uganda (2020) Persons with Disabilities Act 2020. Retrieved on 21 January 2022 from https://ulii.org/akn/ug/act/2020/3/eng%402020-02-14 Grech, S. (2019) ‘Disabled families: The impact of disability and care on family labour and poverty in rural Guatemala’. In Societies 9(4): 76. Handicap International (2006) Good Practices for the Economic Inclusion of People with Disabilities in Developing Countries. London: Handicap International. Hunt, J. (2011) Situation Analysis of Disability Resources and Needs of Shantytowns Near Lima, Peru. Student Publication. Dayton: Wright State University. Retrieved on 2 December  2021 from http://corescholar.libraries.wright.edu/cgi/ viewcontent.cgi?article=1054&context=mph ILO (International Labour Organisation) (1944) Employment (Transition from War to Peace) Recommendation. Recommendation No. 71. Geneva: ILO. ILO (International Labour Organisation) (1955) R99 Vocational Rehabilitation (Disabled) Recommendation. Recommendation No. 99. Geneva: ILO. ILO (International Labour Organisation) (1972) Employment, Incomes and Equality: A Strategy for Increasing Productive Employment in Kenya. Geneva: ILO. ILO (International Labour Organisation) (1983) C159 Vocational Rehabilitation and Employment (Disabled Persons) Convention. Geneva: ILO. ILO (International Labour Organisation) (2001) Code of Practice on Managing Disability in the Workplace. Geneva: ILO. ILO (International Labour Organisation) (2002a) Woman and Men in the Informal Economy: A Statistical Picture. Geneva: ILO. ILO (International Labour Organisation) (2002b) Workers in the Informal Economy: Platform of Issues. Geneva: ILO. www.wiego.org/sites/default/fles/resources/fles/ ILC02PlatforM.pdf ILO (International Labour Organisation) (2002c) Decent Work and the Informal Economy. International Labour Conference, 90th Session. Geneva: ILO. ILO (International Labour Organisation) (2008) The ILO at a Glance. Geneva: ILO. Retrieved on 18 January  2022 from www.ilo.org/global/about-the-ilo/ WCMS_082367/lang – en/index.htm ILO (International Labour Organisation) (2018) Making Apprenticeships and Workplace Learning Inclusive of Persons with Disabilities. Policy Brief. Geneva: ILO. Retrieved on 18 January 2022 from www.ilo.org/wcmsp5/groups/public/ – ed_emp/ – ifp_skills/documents/publication/wcms_633257.pdf ILO (International Labour Organisation) (2019) Promoting Employment Opportunities for People with Disabilities: Quota Schemes – Volume 2. Policy Brief. Geneva: ILO. Retrieved on 18 January 2022 from www.ilo.org/wcmsp5/groups/ public/–ed_emp/–ifp_skills/documents/publication/wcms_735532.pdf

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ITC-Welcomgroup (undated) Disability Handbook for Industry. Retrieved on 3 January  2022 from www.itcportal.com/businesses/Welcomgroup-DisabilityHandbook-for-Industry.pdf Katsui, H. and Mojtahedi, M. (2015) ‘Intersection of disability and gender: Multilayered experiences of Ethiopian women with disabilities’. In Development in Practice 25(4): 563–573. La Porta, R. and Shleifer, A. (2014) ‘Informality and development’. In Journal of Economic Perspectives 28(3): 109–126. Liao, J. (2020) ‘The quota system for employment of people with disabilities in China: Policies, practice, barriers and ways forward’. In Disability and Society 36(2): 326–331. Martinelli, E. and Mersland, R. (2010) ‘Microfnance for People with Disabilities’. In Barron, T. and Ncube, J. (Eds.) Poverty and Disability. London: Leonard Cheshire Disability, 215–254. McConkey, R. (2016) ‘Supporting Family Caregivers’. In Iriarte, E., McConkey, R. and Gilligan, R. (Eds.) In Disability and Human Rights: Global Perspectives. London: Palgrave, 231–245. Mont, D. (2013) ‘Employment programmes for people with disabilities in low- and middle-income countries’. In Heymann, J., Stein, M.A. and Moreno, G. (Eds.) Disability and Equity at Work. New York: Oxford University Press, 23–41. Moodie, B. (2010) ‘Self-employment for people with disabilities’. In Barron, T. and Ncube, J. (Eds.) Poverty and Disability. London: Leonard Cheshire Disability, 261–285. NCPEDP (National Centre for the Promotion of Employment of Disabled People) (2020) NCPEDP – Mindtree Helen Keller Awards 2020. Retrieved on 26 January 2021 from https://enabled.in/wp/ncpedp-announces-ncpedp-mindtree-helen-kellerawards-2020/ Neufeldt, A. (1995) ‘Self-directed employment and economic independence in lowincome countries’. In O’Toole, B. and McConkey, R. (Eds.) Innovations in Developing Countries for people with Disabilities. Chorley: Lisieux Hall, 161–182. O’Reilly, A. (2007) The Right to Decent Work of Persons with Disabilities. Geneva: ILO. Powers, T. (2008) Recognising Ability: The Skills and Productivity of Persons with Disabilities. Employment Working Paper No. 3. Geneva: ILO. Ransom, B. (2010) ‘Lifelong Learning in Education, Training and Skills Development’. In Barron, T. and Ncube, J. (Eds.) Poverty and Disability. London: Leonard Cheshire Disability, 145–175. Sargeant, M., Radevich-Katsaroumpa, E. and Innesti, A. (2018) ‘Disability quotas: Past or future policy?’ In Economic and Industrial Democracy 39(3): 404–421. UN (United Nations) (2006) Convention on the Rights of Persons with Disabilities. Washington: United Nations. UN (United Nations) (2015) Transforming Our World: The 2030 Agenda for Sustainable Development. Washington: United Nations. UNDESA (United Nations Department of Economic and Social Afairs) (2018) Disability and Development Report: Realising the SDGs, by and for Persons with Disabilities. New York: United Nations. UNICEF (United Nations International Children’s Emergency Fund) (2014) Global Initiative on Out of School Children: South Asia Regional Study. Kathmandu: UNICEF. Retrieved on 10 January 2022 from http://uis.unesco.org/sites/default/

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files/documents/out-of-school-children-south-asia-country-study-education2014-en.pdf WHO (World Health Organization) and World Bank (2011) World Report on Disability. Geneva: WHO. WPAC (World Policy Analysis Center) (2016) World Dataset on Disability. Retrieved on 10 January 2022 from www.worldpolicycenter.org/maps-data/data-download/ disability-data-download Young, R., Reeve, M. and Grills, N. (2016) ‘The functions of disabled people’s organisations (DPOs) in low and middle-income countries: A literature review’. In Disability, CBR and Inclusive Development 27(3): 45–71. Zero Project (2018) Innovative Practice 2018 on Accessibility: Making Training Centres Accessible. Retrieved on 18 January  2022 from https://zeroproject.org/ practice/pra181518moz-factsheet/

10 Disability and disasters

The war that is currently raging in Ukraine has led to a refugee crisis in Europe of staggering proportions. Even before this war began, however, forced migration due to confict was at its highest levels since the Second World War, while the frequency and scale of disasters caused by natural hazards was also increasing (IFRC, 2016). The growing risks associated with climate change were highlighted in the 2020 World Disasters Report, which reported that 2,850 disasters arising from natural hazards had occurred between 2010 and 2019 with 83 per cent of these caused by climate- and weather-related extreme events, a rise of almost 35 per cent since the 1990s (IFRC, 2020). When the rising threat of terrorism is factored in as well, it becomes clear that the world is becoming increasingly volatile. Disasters tend to be most devastating in low-income settings, which are often characterised by weak infrastructure, poorly constructed houses and a lack of resources for immediate and longer-term recovery. The 2010 Haiti Earthquake, which resulted in the deaths of over 200,000 people and displacement of more than two million people (DEC, 2013), provides an example of the kind of catastrophic scenario that can easily arise when disasters occur in countries that are ill-equipped to withstand their impact. The distinction that is sometimes made between human and natural disasters is a slightly false one, given that disasters arising from natural hazards are often caused or exacerbated by human factors, such as growing levels of pollution and preventable climate change, as well as poor disaster planning and management. For example, the destruction wrought by Hurricane Katrina in 2005 was partly caused by the failure of the man-made levees to adequately protect the low-lying city of New Orleans (Priestley and Hemingway, 2007). There are often strong linkages between disasters as well, whether they arise from human or natural causes. For example, armed confict tends to damage infrastructure and weaken social structures, thus increasing the potential impact of natural hazards. Confict may also lead to a loss of skilled personnel and other key resources, such as medical equipment, thus further reducing capacity to respond to (and recover from) future disasters. Conversely, disasters arising from natural hazards also tend to damage infrastructure and drain resources, as well as deepening poverty DOI: 10.4324/9781003256038-10

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and inequality, thus reinforcing conditions that increase the risk of confict (Collier et al., 2003). In this chapter, the term ‘disaster’ is used to refer to any major disaster that is caused by human factors, a natural hazard or a combination of both. Following this introduction, the frst main section looks at how disabled people experience disasters, especially in resource-poor settings of the Global South. The disaster management cycle, incorporating the four main phases of disaster preparation, response, recovery and mitigation, is then presented. This framework is used to structure the discussion that follows around disability issues and concerns arising before, during and after disasters occur. Also, this discussion considers how humanitarian agencies can adopt more disability-inclusive approaches to disaster planning and management. The chapter then focuses on the increasingly important role of disabled people’s organisations (DPOs), as representative organisations of disabled people, in contributing to disaster planning and management processes. Finally, the chapter ends with a short review of international frameworks, standards and guidance documents on disaster management, including some that are disability-specifc.

Impact of disasters on disabled people It is widely acknowledged that disabled people tend to be disproportionately afected by disasters (Lord and Stein, 2022; Twigg et al., 2018; Wisner et al., 2012). In Japan, for example, the 2011 earthquake and tsunami resulted in over 15,000 deaths, with the mortality rate among disabled people found to be more than double that of the overall population (Government of Japan, 2012). The vulnerability of disabled people to the impact of disasters is typically reinforced by high levels of poverty, especially in the Global South, combined with factors such as stigma, inaccessible infrastructure, inadequate disability data and a lack of participation in disaster planning processes (King et al., 2019; Smith et al., 2012). Some of these structural inequalities were highlighted by a global survey that was conducted by the United Nations Ofce for Disaster Risk Reduction (UNISDR), with the participation of 5,450 disabled people representing 126 countries. The survey revealed that disabled people were ‘rarely consulted about their needs, and only 20% could evacuate immediately without difculty in the event of a sudden disaster event’ (UNISDR, 2013, p. 1). Magareta Wahlstrom, the Head of UNISDR, stated that The results of this survey are shocking. It clearly reveals that the key reason why a disproportionate number of disabled people sufer and die in disasters is because their needs are ignored and neglected by the ofcial planning process in the majority of situations. They are often left totally reliant on the kindness of family, friends and neighbours for their survival and safety. (p. 1)

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Intersectional discrimination Disabled people themselves do not form a homogeneous group. As discussed in Chapter 3, they have diverse needs and capacities, as well as multiple identities. Some may be particularly disadvantaged through the intersection of disability with other social characteristics, such as gender, age, ethnicity, poverty status and impairment type. For example, a study conducted in war-torn Afghanistan revealed that disabled women were highly vulnerable to poverty and inequality, with gender an even more signifcant exclusionary factor than disability (Bakhshi and Trani, 2006). A report on the 2015 Nepal earthquake, based on extensive feld research conducted in the early recovery phase, provides further evidence of intersectional discrimination, revealing that ‘the earthquake afected the socially excluded groups, namely Dalits, Jananatis and women, particularly those with disabilities, disproportionately’ (Lord et al., 2016, p. 18). The researchers found that these groups had either been denied access to the assistance that they needed or that the assistance provided had not adequately met their specifc needs. In fact, disaster planning processes and programmes frequently fail to take account of the diversity among disabled people, who are often simply labelled a ‘vulnerable group’ (Kett, 2010; UNHCR, 2007). Poverty impacts When communities have been torn apart due to the destruction of infrastructure and breakdown of services, as well as illness, loss of life and displacement, disabled people may be vulnerable to increased poverty, vulnerability and discrimination (Lord, 2014; Priestley and Hemingway, 2007). In Nepal, for example, the vulnerability and exclusion of disabled people, arising from entrenched social hierarchies and environmental barriers within Nepalese society, was even greater following the 2015 earthquake (Lord et al., 2016). Many disabled people were denied access to health services, especially in rural areas where damage to roads and trails made it even harder for those with mobility impairments to reach the health centres, which were mainly located in market towns. Impairment-related impacts Major disasters lead to steep rises in disability prevalence. It has been estimated, for example, that disability prevalence increased by 20 per cent across the Asia Pacifc region in the aftermath of the 2004 Indian Ocean tsunami (World Bank, 2005). It can be useful to distinguish between those who became disabled as a result of disasters and those with pre-existing impairments, as their experiences may difer signifcantly. Post-disaster relief and development programmes, including health and rehabilitation services, often prioritise those seen as ‘victims’ of the catastrophic events that have recently occurred, such as ex-combatants (Kett, 2010). Hence, those with pre-existing impairments may be regarded as ‘lower priority’, often leading to exclusion, isolation and deeper poverty. In Palestine, for example, people who have become

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disabled due to Israeli violence often gain martyrdom status and are provided with fnancial compensation by the Palestinian Authority, while those with impairments unrelated to the confict tend to be marginalised and do not receive equivalent fnancial support (Burton et al., 2013). The tendency of humanitarian agencies to adopt narrow medicalised approaches can lead to the neglect of those with pre-existing impairments due to a failure to consider the broader recovery and reintegration needs of all disabled people (Berghs and Kabbara, 2016). There can also be a tendency to prioritise those with physical impairments over those with other types of impairment, leading to a hierarchy among disabled people seeking humanitarian aid (Berghs, 2012).

The disaster management cycle There are many diferent versions of the disaster management cycle, which shows how the various phases of disaster management link together in a cyclical manner. One such version is shown in Figure 10.1.

Figure 10.1 The disaster management cycle Source: Reproduced by kind permission from Alexander, D.E. Principles of Emergency Planning and Management 2002 (Terra/Dunedin Academic Press, Edinburgh).

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This diagram is something of an oversimplifcation, as the disaster management phases are not always so clearly defned and often overlap (Coppola, 2015). The actual occurrence of a disaster (referred to in the diagram as ‘impact’) may continue for several years and overlap with all phases of the cycle, especially in areas afected by protracted or recurring confict. Nevertheless, the diagram provides a useful analytical tool that will now be utilised to frame an analysis of disability issues during each of the four main phases of the cycle.

Disaster preparation This phase of the disaster management cycle involves the implementation of processes and measures designed to minimise the impact of an impending disaster and increase the survival chances of those likely to be afected. Preparedness measures include the mapping of vulnerable households, implementing or improving early warning systems and putting into place evacuation plans. Inadequate data A lack of data on the prevalence, whereabouts and diverse needs of disabled people can seriously undermine the extent to which these measures are disability-inclusive (Smith et al., 2012), as well as reducing opportunities for disabled people to actively participate in preparatory processes. Research conducted in the Solomon Islands (King et al., 2019), based on in-depth interviews conducted with a small group of disabled people with recent experience of disasters, found that discriminatory social attitudes around disability were the main obstacle to the generation of data around disability and disasters. Participants reported that they had received little information on how to manage in a disaster and that responses tended to be ‘reactive and inconsistent, rather than anticipatory and based on an existing understanding of the needs of persons with disabilities and how to address them during a disaster’ (p.  463). The 2030 Agenda for Sustainable Development (UN, 2015b) acknowledges the general need for improved data collection on disability, calling on all nations to ‘increase signifcantly the availability of high quality, timely and reliable data disaggregated by disability’ (Target 17.18). In disaster contexts, there is a particular need for more data on the immediate impacts and outcomes for disabled people, as well as the longer-term health and social consequences (Twigg et al., 2018). Data collection and analysis should take account of diversity among disabled people and the distinct needs of various subgroups, such as women, children, elderly people, those with mental health needs and those with particular impairment types.

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Early warning and evacuation The 2007 World Disasters Report (IFRC, 2007), which has a chapter on disability, highlights the frequent failure of early warning systems and evacuation plans to take account of disability. The report notes that many lives were saved in the 9/11 attacks because the Associated Blind Organisation, which had ofces on the ninth foor of the World Trade Centre, had worked with the Fire Department to develop an evacuation plan and regularly carried out drills. It goes on to recommend developing a range of impairment-specifc early warning and communication systems, such as large print and braille materials for partially sighted and blind people, sign language captions on televisions for deaf people and face-to-face discussions with those who have intellectual impairments. Also, the report recognises the importance of disability awareness training, particularly for emergency service and relief agency personnel, as an essential element of disaster preparation. Poverty and isolation Leaving aside the accessibility barriers, disabled people may also be excluded from early warning mechanisms due to poverty and social isolation. Research based on interviews with disabled women in Cambodia, where there is little state investment in formal early warning systems, found that social networks were the most reliable source of information around impending disasters (Gartrell et al., 2020). However, many disabled women were cut of from these networks due to living on village peripheries and rarely leaving their houses, while others could not aford to purchase regular credit for their mobile phones and so could not always access disaster warnings via social media. In fact, of the 39 disabled women who had experienced a disaster in the past decade, only 17 reported that they had received some kind of early warning.

Disaster response The response phase normally occurs during or immediately after the occurrence of a disaster. It is during this phase that relief agencies intervene to rescue people and respond to their immediate needs. Blanket approaches Kett (2010) observes that many agencies adopt a ‘blanket’ approach to meeting the basic needs of the most vulnerable people, including disabled people, who are often viewed as ‘passive victims’. While the provision of basic requirements, such as food, shelter, water and sanitation, following a disaster is clearly an urgent priority, it is the failure on the part of many

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relief agencies to take account of disability, in terms of how these needs are provided for, that often puts disabled people at a disadvantage. For example, a study conducted in the food-prone coastal belt of Bangladesh (CSID, 2002) revealed that disabled people often had difculty in queuing up for long periods at aid distribution points, so they would either send a child to collect a smaller ration or pay a neighbour to collect rations for them. While blanket approaches help to ensure that disabled people survive the immediate aftermath of a disaster, they may also reinforce vulnerability by failing to ensure that relief aid distribution processes are fully accessible and non-discriminatory. Displacement Displacement, when it occurs, can exacerbate the problems that disabled people face following the occurrence of a disaster. When communities are displaced, the rights and needs of disabled people who are forced to migrate are often ignored while others may simply be left behind or stranded during transit, leaving them with reduced family and community support and increased vulnerability to poverty, violence and exploitation (Pisani and Grech, 2015; Berghs, 2015; UNHCR, 2007). Research conducted in Northern Uganda reveals that disabled people were sometimes left behind when government forces moved people to protected villages in safe zones during the long-running confict (Businge, 2016). Similarly, a report by Human Rights Watch (HRW, 2015) revealed that disabled people living in the Central African Republic were often abandoned when their communities came under attack by armed groups in 2013, with many spending days and weeks in deserted villages with little food and water. When disabled people do travel, they tend to face greater security risks than others, particularly if their journeys are lengthened due to mobility diffculties. Interviews with disabled people who had fed from confict in Sierra Leone revealed tremendous difculties encountered during fight, with their survival often attributed to the support of family members, friends and even strangers (dos Santos-Zingale and McColl, 2006).1 Similarly, research conducted in the Solomon Islands (King et al., 2019) found that family members of disabled people were often ‘pivotal in ensuring their safety and wellbeing’ (p. 462) when disasters led to displacement. Temporary shelters and camps Journeys usually end up at temporary shelters or camps, which are often designed with little thought given to accessibility, even when accessibility guidelines and policies are in place (Priestley and Hemingway, 2006). Research conducted in Haiti (Hunt et al., 2015), following the 2010 earthquake, revealed that the issue of accessibility in relation to

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temporary shelters raised some dilemmas for relief agencies. Questions were raised around ‘what types and extents of adaptation would be justifed if it meant that fewer shelters could be constructed due to added costs or lengthier construction time’ (p. 5). In the Philippines, where Typhoon Haiyan led to the displacement of over four million people in November  2013 (NDRRMC, 2014), the government constructed bunkhouses to accommodate some of those who had lost their homes. My visit to one of the bunkhouse complexes, which was still fully inhabited one year on from the disaster, revealed signifcant accessibility concerns (Cobley, 2015).2 The bunkhouses were raised above the ground, due to the risk of fooding, with three steps leading to each entrance and no ramps, and the communal washrooms were far too cramped for easy access. One bunkhouse resident with a visual impairment revealed that he had injured himself several times because there were no handrails to assist him along the narrow and poorly-lit concrete path between the bunkhouse and the toilet block. Disabled people are often vulnerable to discrimination, as well as psychological and physical abuse (including sexual and gender-based violence), while living in temporary shelters and camps (UNHCR, 2007). For example, there is anecdotal evidence from the Dadaab refugee camps in Kenya of disabled refugees, especially children, sufering frequent physical and verbal abuse (WRC, 2008). Disabled people may also be disadvantaged in terms of access to relief aid, as illustrated by the following account of life in a temporary camp in Sierra Leone.

Disability discrimination within temporary camps The most important activity, which disturbed me, was when I  wanted to go to the toilet. .  .  . You know a disabled person cannot squat unless they sit down and the toilet was not clean, people messed it up. . . . It was very bad, I had no one to help me fetch water. .  .  . When I  wanted a child to help me, I had to pay him to fetch water, do laundry, you know, it was really difficult. .  .  . There were NGOs who brought supplies, by the time they reached where we were, we did not get it. It is a hard fight to get the supplies and it is only possible through good connections. And I was not able to walk very fast when they told us we should form a queue for the supplies. (dos Santos-Zingale and McColl, 2006, p. 249)

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When displacement becomes protracted, disabled people can end up living in such conditions for many years, facing challenges in all areas of life. For example, being categorised as ‘vulnerable’ can lead to their exclusion from empowerment opportunities, such as vocational training, selfreliance activities and business grants (UNHCR, 2007). Disabled children may be denied access to schooling due to a lack of appropriate teaching methods and learning materials, as well as inaccessible school buildings and facilities (Shivji, 2010; WRC, 2008). While basic healthcare is sometimes available in temporary camps, access to specialist medical and rehabilitation services is often a problem. Even where such services are locally available, disabled refugees may be denied access due to a lack of accessible or afordable transport, complex referral processes or encampment policies that restrict freedom of movement (Mizra, 2015; Pearce, 2015, Reilly, 2010). Case Study 10.1 provides an example of a medical outreach programme designed to ensure that disabled children living in refugee camps received the specialist support that they needed.

Case Study 10.1: A model project: regular visits by disability workers in Nepal A very successful component of Caritas Nepal’s disability programme has been its community outreach work, funded by UNHCR. Disability workers visit the homes of children with disabilities on a daily basis to provide physiotherapy, counselling and occupational therapy. The disability workers assess the physical needs of the children and provide cost-effective aids and appliances, such as special chairs, parallel bars and crutches. They provide materials to maintain the personal hygiene of children with mental disabilities and help teach children and their families about daily living skills. In 2007, regular home visits were made to 116 refugees with disabilities in the camps. In addition, community workers provide respite care for children with cerebral palsy in the camps for a fxed period of time to give their mothers, or other caregivers, a much-needed break. As many as 54 children with spastic cerebral palsy were beneftting from this programme in 2007, and it was considered one of the model programmes in the refugee camp. Source: Women’s Refugee Commission (2008, pp. 20–21).

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Refection exercise 10.1 Some governments and humanitarian agencies implement ‘cash for work programmes’ in response to disasters to involve local people in disaster recovery work, such as the clearing of debris, and to provide a source of short-term income at a time when many will have lost their livelihoods. These programmes are sometimes criticised, however, for efectively discriminating against disabled people due to their emphasis on hard physical labour (Kett, 2007). Consider how you might design a disability-inclusive ‘cash for work’ programme to be implemented during the response phase of a major disaster. Think about how you would recruit participants, and how you would arrange the work programme to ensure that disabled workers were able to participate as fully as possible.

Disaster recovery There is often a gradual transition from the response phase to the recovery phase, in which services are gradually restored and those afected by the disaster are supported to rebuild their lives. During the recovery phase, which may last for several years, disabled people typically continue to face huge barriers to participation in areas such as employment, education, healthcare and community participation, as pre-disaster disabling barriers are re-established. This was noted in the recovery phase following Typhoon Haiyan in Philippines, for example, where public spaces were often inaccessible and disabled people experienced a wide range of physical, institutional and attitudinal barriers as they attempted to rebuild their lives (Zayas et al., 2017). Similarly, in post-confict Sierra Leone disabled people revealed that they had experienced great difculties in accessing various public and private services, including transportation and medical care, and also felt excluded from community meetings and activities (dos Santos-Zingale and McColl, 2006). The sense that many felt excluded from their recovering communities was highlighted by one study participant.

Exclusion from community activities Sometimes you want to go and watch sports. No sooner than you appear at the gate people will say ‘go home, if anything happens

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here you cannot get out fast!’ I had to say to them ‘We too are human beings we have our right and this is social business and it is the only social activity I like to be involved in’. Most of my fellow disabled were stopped. When they recognised me as the polio chairmen I tried to advocate on their behalf, but they (people at the gate) would not listen. (p. 250)

A time of opportunity Reconstruction and recovery processes may provide opportunities for disabled people, as well as presenting challenges. Interviews conducted with representatives of relief agencies that responded to the 2010 Haiti earthquake revealed that there had been a positive shift in social perceptions around disability following the earthquake (Hunt et al., 2015). This was partly attributed to the increased prevalence of disability following the earthquake, which meant that disabled people were now far more visible within society, but also to the fact that many of those with new impairments had been able to resume positions of infuence within their communities, especially in the government sector. If accessibility needs are taken into account as infrastructure is repaired or rebuilt, and services re-established, then more inclusive societies can be the outcome. Anti-discrimination disability legislation, where it exists, as well as local or external expertise on disability rights and disabling barriers, can be useful in guiding eforts to promote inclusivity (Priestley and Hemingway, 2007). There are also economic arguments in favour of accessible reconstruction, since the cost of making new buildings accessible is minimal, in comparison to the cost of making alterations at a later stage (BermanBieler, 2010). However, it cannot be assumed that accessibility concerns will always be prioritised during the reconstruction phase. Accessibility requirements are sometimes ignored, as governments and donors rush to complete rebuilding programmes so that displaced people can return to their homes (IFRC, 2007).

Disaster mitigation Mitigation processes, which often overlap with long-term recovery processes, are designed to reduce the likelihood of a disaster occurring in the future or to minimise the likely consequences of a future disaster. For example, social protection measures and pro-poor insurance schemes can be a vital means of mitigating disaster risk, as they ofer protection from the increased medical expenses, loss of livelihoods and damage to housing that

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often occurs due to disasters. Risk mitigation processes that take account of disability can help to ensure that accessibility needs are addressed at each stage of the disaster recovery and reconstruction phases (Lord and Stein, 2022). Disability-specifc disaster mitigation measures, such as programmes and campaigns designed to raise disability awareness, reduce stigma and combat discrimination, can play a crucial role in reducing the vulnerability of disabled people to the impact of future disasters. Increased understanding of disability within communities can also help to raise the visibility of disabled people, thus facilitating the collection of more accurate data on their whereabouts and specifc needs. The raising of disability awareness within humanitarian agencies is particularly important since these agencies are usually at the forefront of disaster management. Many relief agencies lack knowledge and awareness as they consider disability to be a specialist feld, so they tend to refer disabled people who they come across to ‘specialist’ agencies (Twigg et al., 2018; Mizra, 2011). One example of a disability-inclusive approach to disaster mitigation is a project developed by the Centre for Disability in Development (CDD, 2011) in the coastal areas of Bangladesh. This project involved the establishment of Ward Disaster Management Committees (WDMCs), each including disabled representatives. Within each WDMC, fve task forces were formed, with various areas of responsibility, each including women and disabled people. Project activities included disability and disaster awareness-raising programmes, such as street theatre, the construction of an accessible rescue boat and training on the evacuation of disabled people for family members and neighbours. Case Study 10.2 provides another positive example of a disability-inclusive disaster mitigation project, this time from Vietnam.

Case Study 10.2: Disability-inclusive disaster risk management (DRM) in Vietnam Despite many persons with disabilities being respected war veterans, impaired people in Vietnam tend to be viewed as victims in need of special assistance. When Malteser International and local DPOs launched a DRM project in the central province of Quang Nam, this perception began to change. Rather than being an afterthought to overall planning, persons with disabilities spoke up and contributed to a new DRM system

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that included better disaster preparedness for all members of target communities. A  new manual has been created in the process, providing step-by-step guidance for disability-inclusive DRM in Vietnam and beyond. Just south of the city of Danang, Quang Nam province lies in Vietnam’s central area that is frequently hit by typhoons, storms and foods. During the war, the province saw some of the heaviest fghting. High numbers of persons with disabilities are testimony to this past. As Malteser International prepared a new project for communitybased disaster risk management, it collaborated closely with DPOs that had been established under the 2011 National Law on Disability. Together with Malteser International, the DPOs facilitated a thorough assessment of people with disabilities and their specifc needs. They then followed a twin-track approach. Recognising prevalent stigma as well as a reluctance of many persons with disabilities to express specifc concerns, the DPOs frst worked exclusively with persons with disabilities (and their families) and built-up capacity and selfconfdence. Only afterwards did the project launch the second track, the overall assessment of disaster risks and the development of village DRM plans. Persons with disabilities – 2,443 of whom were trained and 273 selected as representatives in DRM committees – were now confdent to raise specifc concerns and to contribute to the overall implementation. As Nguyen Van Quang, Head of the Dien Ban DPO, explains: Earlier, we did not dare to call the President of the commune’s People’s Committee to talk. Now, we can come to the People’s Committee and discuss our business with him face to face. The result for the people in Quang Nam is both greater inclusion of people with disabilities and better preparedness for foods and storms. Source: Adapted from Handicap International (2014, p. 18).

Role of DPOs in disaster management processes As Case Study 10.2 illustrates, DPOs can play a crucial role in disaster risk management processes. They are uniquely positioned to advocate and mediate on behalf of their members on specific issues, as well

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as to raise awareness of disability rights more generally. Research in Cambodia highlighted the positive impact of DPO advocacy on the attitudes of local officials towards disabled women, laying the foundations for increased levels of support in the lead up to disasters (Gartrell et al., 2020). Priestley and Hemingway (2006) observe that, in emergency relief situations, DPOs and their close allies are more likely to advocate solutions based on rights-based and social model perspectives than mainstream relief agencies, thus helping to ensure that the wider needs of disabled people around social inclusion are addressed. However, it is widely reported that governments and mainstream humanitarian agencies rarely engage with them (Twigg et al., 2018; Lord et al., 2016; Kett, 2010). Strengthening DPOs The strengthening of DPOs and their networks is vital to enable them to engage with humanitarian agencies more efectively and to promote more inclusive approaches to disaster management. This was one of the objectives of the Earthquake Disability Project implemented by the World Bank in response to the 2005 Pakistan earthquake, which included a capacity-building component designed to strengthen DPOs and enable them to work alongside the Pakistan government to develop a community-based rehabilitation strategy (World Bank, 2010). According to some benefciaries, this inclusive project resulted in a marked increase in disability awareness across the wider community. The case for empowering DPOs is also supported by a study in Indonesia that focused on three DPOs which had participated in an NGO-led capacity development programme, leading to increased levels of organisational competence and confdence to engage in disaster preparedness processes (Pertiwi et al., 2019). Following the training, the three DPOs successfully applied for funding from the Disability Rights Fund to set up and lead their own disaster preparedness projects. These projects involved collecting data on disabled people and their living conditions, which was then used to sensitise key stakeholders, including government and humanitarian agencies, on disability issues and to engage in established disaster risk reduction forums. The authors report that, despite encountering various challenges, the three DPOs were efective ‘at two levels: increasing awareness and infuencing policy through data-driven advocacy; and preparing people with disabilities and their communities for future disasters’ (p. 1436). Case Study 10.3, which shows how a DPO was able to play a lead role in relief operations following Typhoon Haiyan in the Philippines, provides a further example of the value of capacity-building and the need to recognise the potential role of DPOs as active agents of disaster recovery.

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Case Study 10.3: Ageing and disability focal points in the Philippines A representative of the disability-focused NGO Christoffel Blinden Mission (CBM) described a project that had been implemented in Ilioilo Province in the Western Visayas, a region that was badly affected by Typhoon Haiyan in 2013. CBM had supported a wellestablished local DPO, the Association of Disabled People Iloilo (ADPI), to set up and run its own relief operations. The group had carried out a range of activities from an initial mapping exercise and recruiting volunteers (many of whom were disabled) to organising the delivery of relief aid packages to nearly 4,000 vulnerable households, including many with disabled family members. Four months later, as the emergency relief phase drew to a close, ADPI set up two Ageing and Disability Focal Points in response to a growing realisation that vulnerable people often did not know how to access mainstream services. The Focal Points provided an accessible point of contact and information, from where referrals could be made to existing services in areas such as health, assistive devices, shelter, education and livelihoods. According to one CBM representative, these Focal Points have developed strong partnerships with a range of local and international relief and development agencies, enabling them to advocate for greater inclusion of disabled people within mainstream services. He moreover highlighted the central decision-making role of the DPO, demonstrating that disabled people can be development planners and actors, as well as beneficiaries, in the recovery process: They worked harmoniously together during the relief phase, so we asked them how they would like to continue their work. They came up with the idea of the Focal Points themselves. The project has changed community perceptions and raised self-esteem among the group’s members. CBM has now committed to extending funding for a further two years to enable ADPI to focus on longer-term development initiatives across four municipalities in the areas of health and livelihoods. Source: Adapted from Cobley (2015).

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Peacekeeping and reconciliation DPOs can also make an important contribution to peacekeeping and reconciliation processes in the post-confict context, as illustrated by a study conducted in Sri Lanka (Kandasamy et al., 2016). This study focused on the work of a local women’s disability advocacy organisation that had provided advocacy support to rural disabled women, living in areas afected by the long-running civil war, who typically experienced marginalisation and discrimination on the basis of disability, gender, rurality and poverty. According to many of the disabled women who were interviewed for the study, the emphasis on leadership training and raising awareness of disability rights had been efective in terms of empowering them to adopt more positive identities, to challenge discrimination and to participate more fully in their communities. Furthermore, the organisation had played a part in easing ethnic tensions by encouraging the development of cross-ethnic relationships, based on a sense of empathy and trust, between Tamil and Sinhala disabled women who would previously have avoided or even feared each other.

Refection exercise 10.2 Make a list of the potential benefts that may arise from the implementation of disability-inclusive approaches to disaster management during each phase of the disaster management cycle. Then consider each of these potential benefts in terms of who they relate to. Do they relate to just disabled people and their families only, or do they extend to others in the wider community?

International disaster management frameworks, standards and guidance documents This fnal section reviews a series of international disaster management frameworks, standards and guidance documents, refecting a gradual trend towards increased recognition of a rights-based approach to disability and the need to support the active participation of disabled people within disaster planning, response and recovery processes. This places a clear obligation on governments and humanitarian agencies to mainstream disability into all disaster management and planning processes, to take account of the diverse needs of all disabled people and to engage meaningfully with disabled people and their representative organisations during all phases of the disaster management cycle.

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United Nations Convention on the Rights of Persons with Disabilities (CRPD) (2006) The CRPD calls on State Parties to take all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk, including situations of armed confict, humanitarian emergencies and the occurrence of natural disasters. (UN, 2006, Article 11) While Article 11 emphasises the rights of disabled people to safety and protection, the CRPD also recognises their rights to access the physical environment, including all public facilities and services. This is a critical consideration for governments and humanitarian agencies, underlining the importance of inclusive recovery and reconstruction programmes. There is specifc mention of the need to eliminate barriers to ‘information, communication and other services, including electronic services and emergency services’ (Article 9, paragraph 1b). While these references highlight the vulnerability of disabled people in disaster situations and recognise their rights to access relevant facilities and services, the CRPD fails to explicitly acknowledge the potential role of disabled people as active agents of disaster recovery. This is a surprising omission, given that ‘full and efective participation and inclusion in society’ (Article 3, (c)) is one of the eight general principles on which the Convention is based. Sphere standards This is an inter-agency set of common standards and principles, designed to support good rights-based practice in humanitarian work and to raise the accountability of governments and relief agencies towards benefciaries and donors. The standards, together with detailed technical guidance, are set out in the Sphere Handbook, which is revised periodically. The latest edition was published in 2018 and treats disability as an important cross-cutting theme. Based on a rights-based framework, it explicitly addresses the need for humanitarian agencies both to recognise the needs and capacities of disabled people and to facilitate their participation in disaster planning and management processes: [R]esponse and preparedness programming should consider the capacities and needs of all persons with disabilities and make deliberate eforts to remove physical, communication and attitudinal barriers to their access and participation. (Sphere Association, 2018, p. 14) Although widely recognised and respected within the international humanitarian community, the Sphere Standards are non-mandatory and focus

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mainly on short-term emergency response measures rather than longer-term recovery and reconstruction periods. United Nations High Commissioner for Refugees (UNHCR) (2011) UNHCR has produced a helpful guidance document titled Working with Persons with Disabilities in Forced Displacement (UNHCR, 2011), which addresses a range of typical discrimination issues faced by disabled people in the refugee context. This document advocates a multi-sectoral approach to meeting the needs of disabled refugees, covering areas such as inclusive education, vocational training and accessible infrastructure. Also, it emphasises the importance of consulting with disabled refugees, enabling them to participate in decision-making and supporting them to take on leadership roles. Sendai Framework (2015) The Sendai Framework (UN, 2015a) is an international blueprint for disaster management that was adopted at the 2015 World Conference on Disaster Risk Reduction in Japan. This blueprint, which will remain in place until 2030 and applies to disasters arising from both natural and man-made hazards, calls for a ‘broader and more people-centred approach to disaster risk’ (Preamble, Paragraph 7). This sets the tone for a far more rights-based and participatory approach to disaster planning than its predecessor, the Hyogo Framework, which paid little attention to disability beyond recognising the vulnerability of disabled people in disaster contexts. There are several explicit references to disability in the Sendai Framework, including the following acknowledgement of the potentially vital role of disabled people and their representative organisations as active contributors to disaster planning processes: Persons with disabilities and their organisations are critical in the assessment of disaster risk and in designing and implementing plans tailored to specifc requirements. (Paragraph 36(iii)) The Sendai Framework represents a signifcant commitment, on the part of governments and humanitarian agencies around the world, to prioritise the mainstreaming of disability and active involvement of disabled people themselves in disaster management processes. International Federation of the Red Cross and Red Crescent Societies (IFRC) (2015) The IFRC, in collaboration with Christofel Blinden Mission (CBM) and Handicap International, has produced a practical and detailed technical

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guide, titled All under one roof: disability-inclusive shelter and settlements in emergencies (IFRC, 2015). This guide is designed to ‘bridge the gap between good intentions and practical implementation’ (p.  6) to support humanitarian agencies to deliver more inclusive and accessible disaster planning and response interventions. Charter on Inclusion of Persons with Disabilities in Humanitarian Action (2016) This Charter (UN, 2016), which aims to support the implementation of the Sendai Framework, was launched at the World Humanitarian Summit in 2016 and subsequently endorsed by over 220 stakeholders, including 30 UN Member States, 14 UN agencies and civil society organisations (IASC, 2019). The Charter reafrms the importance of empowering disabled people and enabling them to meaningfully participate in all aspects of humanitarian planning and action.3 IASC Guidelines: Inclusion of Persons with Disabilities in Humanitarian Action (2019) These guidelines were produced by the Inter-Agency Standing Committee (IASC, 2019) following consultation with over 600 stakeholders from the humanitarian and disability sectors (including many DPOs). The guidelines build on the 2016 Charter to set out the practical steps that humanitarian actors must take to ‘efectively identify the needs and rights of persons with disabilities who are most at risk of being left behind in humanitarian settings’ (p. 1). In line with both the Sendai Framework and the 2016 Charter, they place disabled people at the centre of humanitarian action, recognising them ‘both as actors and as members of afected populations’ (p.  1). Another useful initiative at this time was the publication of a collection of 39 case studies, highlighting disability-inclusive approaches in 20 countries, by three leading international disability agencies (CBM International, HI and IDA, 2019). This document provides a set of positive examples to support the uptake of the IASC guidelines.4

Summary of key points •

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Disabled people are disproportionately afected by disasters. The increased vulnerability of disabled people to the impact of disasters arises from a range of factors, including poverty, inadequate data, inaccessible infrastructure, discriminatory attitudes and a lack of participation in disaster management processes. Disabled people form a heterogeneous group within society. Their experiences, priorities and needs in the post-disaster context may difer on account of a range of factors, including age, gender, ethnicity, poverty

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Disability and disasters status, impairment type and whether or not they became disabled as a result of the disaster. Disaster management policies and programmes need to recognise and take account of the diverse needs, vulnerabilities, capabilities and priorities of disabled people. Displacement, when it occurs, often exacerbates the risks and hardships that disabled people face. They may be left behind, often with reduced levels of support, or forced to undertake treacherous journeys that lead them to temporary shelters or camps, where they may also face discrimination and exclusion. In the aftermath of disasters, when economies may have been decimated and resources are often scarce, disabled people typically face increased levels of discrimination and often feel excluded from their recovering communities. However, the recovery phase of the disaster management cycle also presents opportunities for inclusive reconstruction and community-building. DPOs have a vital role to play in disaster management, in terms of identifying the specifc needs of disabled people, challenging discrimination, advocating on behalf of their members and empowering disabled people to participate more fully in their recovering communities. Also, they may engage directly in disaster recovery operations, as illustrated by Case Study 10.3. DPO networks need to be supported and strengthened to enable them to fulfl these roles more efectively. As highlighted by the Sendai Framework, there is a growing international awareness of the need for more inclusive and people-centred approaches to disaster planning, recognising the potential role of disabled people and the organisations that represent them as key partners in disaster planning and management.

Discussion questions 1) To what extent do human factors reinforce the vulnerability of disabled people to the impact of natural hazards? 2) How can emergency response interventions ensure that basic needs are met in a way that takes account of the diverse vulnerabilities and capabilities of disabled people? 3) How can DPOs with limited experience of humanitarian interventions be supported to make more efective contributions to disaster planning and management processes?

Suggested further reading CBM International, HI (Humanity and Inclusion) and IDA (International Disability Alliance) (2019) Case Studies Collection 2019: Inclusion of Persons with Disabilities in Humanitarian Action. Retrieved on 18 March  2022 from www.internationaldisabilityalliance.org/blog/

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case-studies-collection-2019-inclusion-persons-disabilities-humanitarianaction Cobley, D.S. (2015) ‘Typhoon Haiyan one year on: Disability, poverty and participation in the Philippines’. In Disability and the Global South 2(3): 686–707. Dos Santos-Zingale, M. and McColl, M.A. (2006) ‘Disability and participation in post-confict situations: The case of Sierra Leone’. In Disability and Society 21(3): 243–257.

Notes 1 2 3 4

See Suggested further reading. See Suggested further reading. See http://humanitariandisabilitycharter.org for further information on this charter. See Suggested further reading.

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11 Disability and the COVID-19 pandemic

COVID-19 was declared a pandemic by the World Health Organization (WHO) in March 2020. The virus was spreading rapidly across the globe, causing severe disruption to people’s lives and highlighting ever-growing levels of human interconnectivity and interdependence, with eforts to limit its transmission from one country to another proving largely futile. With healthcare systems coming under intense pressure and economies plunging into recession, the spread of COVID-19 also highlighted the deep divisions in society, reinforcing inequality and impacting most severely on vulnerable groups (Cobley, 2022). Disabled people were among those most at risk of catching the virus due to a range of factors such as inaccessible basic hygiene facilities and healthcare services, difculties around social distancing, a reliance on physical contact for support needs and barriers to accessing public health information (WHO, 2020). They have also been among the hardest hit in terms of fatalities (United Nations, 2020a). Furthermore, a growing body of research conducted since the start of the pandemic suggests that many disabled people have experienced increased levels of discrimination, greater isolation and a wide range of socio-economic deprivations, often due to inadequate and ableist state responses which have frequently disregarded their concerns and priorities (Mehrotra and Soldatic, 2021). As the world emerges from COVID-19, there are opportunities to build more inclusive societies. The rapid growth in digital opportunities since the start of the pandemic can potentially transform the lives of disabled people, enabling them to express their views and interact with others more easily and to engage in a wide range of online activities. This could facilitate easier access to education, employment, business and leisure opportunities, enabling them to play a more active role as contributors to their local communities. However, these opportunities will be realised only if the needs and priorities of disabled people are mainstreamed into the policies and practices that drive the long-term recovery process. As Shakespeare et al. (2021) point out, disabled people do not want a return to the pre-pandemic world in which they face barriers to virtually every aspect of societal inclusion. This chapter presents a review of current evidence around the social and economic impacts of the COVID-19 pandemic on disabled people, focusing DOI: 10.4324/9781003256038-11

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mainly on the Global South context. It then goes on to consider a range of disability-inclusive measures that can be adopted by policymakers and service providers to ensure that disabled people are not left behind in the post-pandemic world and that responses to future pandemics are more disability-inclusive. There is a particular focus on the crucial role that disabled people’s organisations (DPOs) can play in this process, if given the opportunity and support.

Impact of COVID-19 With the pandemic in its second year (at the time of writing), a number of surveys and studies around its impact on disabled people have already emerged. The picture emerging from this growing body of research is that the pre-existing inequalities that many disabled people experienced, in areas such as health, education and employment, have deepened since the start of the pandemic. Among the most important of these studies are two large-scale international surveys, one conducted by the COVID-19 Disability Rights Monitor (COVID-19 DRM) in the early stages of the pandemic and the other conducted by the International Disability Alliance (IDA) at a later stage, when many countries were already experiencing their second or third waves. The COVID-19 DRM (2020) survey reached 134 countries and received over 2,000 responses from disabled people and various other stakeholders. The survey report described the overall impact of the pandemic on disabled people as ‘catastrophic’ (p. 7), with many respondents experiencing injustices and severe deprivation, often caused or exacerbated by the failure of governments to adequately take account of their needs. The IDA (2021) survey garnered over 600 responses, all from disabled people themselves, and was focused mainly on the Global South. This survey highlighted a range of socio-economic impacts afecting all respondents while also providing an insight into the experiences of certain under-represented groups, including people with intellectual impairments and disabled people living in humanitarian settings. On a much smaller scale, an international survey of disability organisations (including DPOs and disability-focused NGOs) drew responses from 20 organisation representatives located across 13 countries of the Global South, revealing the impact of the pandemic on their members and benefciaries from an organisational perspective (Cobley, 2022). This section summarises the main fndings of these three international surveys, while also drawing on some more focused studies exploring the impact of the pandemic on disabled people within various countries of the Global South. Loss of community support The COVID-19 DRM (2020) survey report revealed a widespread breakdown of formal and informal community support structures, often leaving disabled people feeling trapped and abandoned within their own homes, with

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limited access to food, medicines and other basic necessities. Other issues that were frequently identifed by survey respondents included the withdrawal of personal assistance, including support from informal caregivers, and reduced access to assistive technologies. Many respondents felt that disabled people had lost a degree of independence and were exposed to signifcant mental health risks as a result of these failures. Similarly, the IDA (2021) survey revealed that support services had been negatively afected for 43 per cent of respondents, with many falling into a ‘vicious cycle of losing support services, facing barriers in fulflling their basic needs, and experiencing mental health challenges without having access to psychosocial support’ (p. 9). The survey of disability organisations (Cobley, 2022) also highlighted a rise in mental health issues among disabled people due to the withdrawal of essential services (including transport) and prolonged periods of confnement. It was reported that many disabled people were isolating in their homes even when not required to by law due to general community perceptions associating disability with vulnerability, fears of infection and the misinformed assumption that disabled people were likely to be carrying the virus. The fndings of these international surveys are consistent with those arising from a national survey conducted in India by the National Centre for Promotion of Employment for Disabled People (NCPEDP) (2020), which gathered online questionnaire responses from over 1,000 disabled people. Sixty-seven per cent of respondents reported that they had not been able to access government deliveries of essential supplies (in some cases because they had not been able to obtain disability certifcates). The survey fndings also highlighted the breakdown of social and peer support networks, leading to isolation and loneliness, with some losing the support of caregivers on whom they had relied for personal assistance. This latter issue was highlighted by one respondent, bedridden following a stroke the previous year, who had received no support from his medical attendant or physiotherapist since the lockdown began: I need 24x7 medical attention. But when I asked my caregivers if they would be able to visit my house, they were worried that the police would stop them. There is little clarity on how to get a pass for them. (p. 18) Access to information The three international surveys highlighted concerns about the lack of clear and accessible information about the state of the pandemic, response measures and social assistance schemes that were being implemented. The COVID-19 DRM (2020) survey revealed that information provided was often confusing and inconsistent and sometimes not available in accessible formats. Many disabled people were isolated from their usual contacts and hence very reliant on media sources, such as TV, radio and social media,

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which were not always accessible. In fact, respondents from countries such as Ethiopia, Malawi, Lesotho, Rwanda and Zimbabwe reported that many disabled people had no access to information at all, particularly those living in rural areas. The IDA (2021) survey also highlighted digital barriers, restricting access to information about the pandemic and impacting negatively on both education and employment. This is consistent with the fndings of the disability organisation survey (Cobley, 2022), in which several of the organisational representatives reported that their members and benefciaries had not received reliable information about the pandemic, often creating fear and reinforcing their sense of isolation. In many cases, this was because they lived in poor communities and did not own computers, smartphones or even televisions. Access to health and rehabilitation The COVID-19 DRM (2020) survey report highlighted a range of issues around access to healthcare and rehabilitation. Many respondents reported that disabled people had been denied access to healthcare during the pandemic, even in relation to treatment for COVID itself. Several claimed that disabled patients with COVID-19 had been denied access to hospital for treatment due to discriminatory hospital triage procedures while others had been refused treatment due to a perception that they were too difcult to assess, even when their symptoms were clear. A serious implication of these fndings is that many preventable deaths may have occurred due to these apparent failures to uphold the rights of disabled people to access healthcare on an equal basis with others. A signifcant proportion of respondents also reported that disabled people had been unable to access basic medical supplies, such as essential medication, and general healthcare, including therapies and medical rehabilitation. Almost half of the respondents to the IDA (2021) survey had experienced specifc barriers to health and rehabilitation services during the pandemic, including transport restrictions and the refusal of medical care to patients who were unable to wear a facemask. These barriers were exacerbated by economic challenges, with 98 per cent of respondents reporting that they had less money to pay for medicines. The denial of access to regular treatments was also a theme that emerged strongly from the disability organisation survey (Cobley, 2022). In Kenya, for example, it was reported that ‘hospitals became overwhelmed, hence almost inaccessible to persons with disabilities in need of regular therapy/ rehabilitation services’. This problem was sometimes exacerbated by movement restrictions and a lack of accessible transport. Economic stresses The widespread implementation of lockdown measures, along with business closures, has led to job losses and widespread economic hardship. For many

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disabled people, the majority of whom live in conditions of poverty (UN, 2006, Preamble (t)), this has triggered a descent into deeper poverty. The IDA (2021) survey revealed that 44 per cent of respondents had lost all or some of their income during the pandemic, rising to 62 per cent for those with intellectual impairments and 62 per cent for those living in humanitarian settings. While some of these income losses were attributed to job losses, in other cases they arose because family members were no longer able to support them. The disability organisation survey revealed several similar stories of economic hardship, with some respondents noting that disabled people were often the frst to lose their jobs during times of crisis (Cobley, 2022). The devastating economic impact of the pandemic had caused severe impoverishment among members and benefciaries, as described by a representative of the Bangladesh Disabled Development Trust.

Economic impact of the pandemic There is no limit to the sufering for disabled people. . . . The situation is that now there is no food, no matches to light fre, no cooking medium, no shops no transport. Disabled people are soliciting food.

Country studies have revealed similar fndings. More than half of the survey respondents in the NCPEDP (2020) study in India reported that they were facing a fnancial crisis, partly due to delays of up to fve months in the payment of disability pension payments but also due to job losses, salary reductions and the loss of income-generating activities such as street vending. A study in Kenya, based on repeated interviews with a small group of disabled participants, found that the majority had experienced signifcant economic losses, usually due to the loss of their own jobs or those of family members who they were fnancially dependent on (Rohwerder, 2018). Several participants in this study reported that they had not been able to access formal social protection, including cash payments to which they should have been entitled, leading to increased family tensions and feelings of guilt and sadness arising from their increased levels of dependence on others. A study conducted in Nepal and Bangladesh revealed similar experiences of mental anguish among disabled people, arising from sudden job losses, business failures and resulting poverty during the pandemic (Wickenden et al., 2021). Exclusion from education COVID-19 has had a devastating impact on education systems, with 85 per cent of the world’s schoolchildren forced out of schools due to temporary

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closures during lockdown periods (World Bank, 2020). To enable these children to continue their education at home throughout these periods of closure, many schools have relied on digital technology, often supported by television and radio. However, this trend has disadvantaged many disabled children, who are often less able to access these forms of technology due to the digital divide.1 They live in households that are less likely to own a computer or have access to the internet and less likely to have reliable electricity (UNDESA, 2018). The COVID-19 DRM (2020) survey provided evidence of this, with respondents from Malawi and Moldova reporting that disabled children had been excluded from remote schooling due to diffculties in accessing technology. The IDA (2021) survey revealed that one in fve of those who were in education had dropped out completely during the pandemic due to issues around online access, loss of income and poverty. The disability organisation survey also revealed that many disabled children had been disadvantaged by the shift to online learning, especially those with hearing and visual impairments (Cobley, 2022). For example, a representative of the Jamaica Association for the Deaf reported that many deaf children either did not have access to the internet or lacked the parental support that they needed to participate in online lessons. Disabled children have faced the risk of further discrimination and isolation as schools reopen because new safety priorities have often meant that extra learning support measures that many disabled children depend on could not be provided (World Bank, 2020). Disabled girls are particularly vulnerable to the long-term consequences of school closures during the pandemic, as noted in the following extract from a UN Policy Brief titled The Impact of COVID-19 on Women.

Impact of school closures on disabled girls School closures do not just mean that girls are taking on more chores at home, it could also lead to millions more girls dropping out of school before they complete their education, especially girls living in poverty, girls with disabilities or living in rural, isolated locations. (UN, 2020b, p. 10)

Institutional living Many disabled people live in institutions such as hospitals, nursing homes and residential care homes. Also, disabled people (particularly those with psycho-social disabilities and cognitive impairments) are over-represented

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among prison populations (Penal Reform International, 2020). While there is limited data available on the impact of COVID-19 within institutional settings, the available evidence suggests that it is within these settings that the highest rates of COVID-19 infection and mortality have occurred. For example, one study examining mortality rates across 22 countries, mostly located in the Global North, found that deaths linked to COVID-19 in care homes have accounted for, on average, 41 per cent of total COVID-related deaths (Comas-Herrera et al., 2020). Among the factors thought to have contributed to increased infection and mortality rates within institutional settings are insufcient basic hygiene facilities, difculties in social distancing and a lack of COVID-related information, testing and healthcare (UN, 2020a). The COVID-19 DRM (2020) survey report reveals a failure on the part of government agencies to protect the rights of disabled people living within institutions since the start of the pandemic. Despite the obvious and foreseeable risk of rapid infection spread within communal settings, many respondents reported that governments had failed to take essential steps to minimise this risk, such as ensuring access to food, medical supplies and personal protective equipment. It is important to note that many of the responses on this topic emanated from high-income countries of the Global North, where resources should have been readily available to protect those most vulnerable. For example, one respondent from Canada described a long-term care facility in Quebec as dangerously understafed. There were people dead in their beds, others laying on the foor and some others with three layers of diapers and dehydrated. (p. 23) Infection control measures that were commonly adopted within institutions, such as visitor bans and the isolation of residents within their rooms when outbreaks of COVID-19 occurred, reinforced social isolation within these settings. Family members and DPO respondents reported concerns around the safety, health and well-being of disabled residents arising from these practices. For example, one Bulgarian DPO representative expressed the concern that such measures could lead to ‘a lack of care, lack of transparency and concealment of dangerous abuses’ (p. 24). Intersectional discrimination Emerging evidence suggests that the intersection of disability with other various overlapping social identities has led to increased levels of discrimination, oppression and hardship for many disabled people during the pandemic, as noted in the following extract from a United Nations COVID-19 Policy Brief.

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Intersectional discrimination during the pandemic Persons with disabilities experiencing intersectional and multiple discrimination as a result of their gender identity, age, ethnicity, race, sexual orientation, origin, location and legal status, among other factors, will carry a heavier burden of the immediate and long-term economic and social consequences of the pandemic. (UN, 2020a, p. 8)

Shajahan (2021) adopts an intersectional lens to explore how the COVID-19 pandemic has impacted on disabled women in Afghanistan, increasing the discrimination and inequality that they experienced prior to the pandemic, on the basis of both gender and disability. In this patriarchal, confict-ridden society, the disadvantages faced by disabled women, arising due to issues such as inaccessible infrastructure, non-inclusive healthcare systems and lack of fnancial support, are often amplifed due to stigma arising from their perceived failure to easily conform to traditional gendered expectations around motherhood, being a wife and performing household duties. The study found that these problems had greatly intensifed during the pandemic. For example, many disabled women had faced greater economic vulnerability due to the loss of household income that they had previously relied on. Access to healthcare had been reduced, especially for those living in rural areas, due to a lack of female health professionals (men are often not allowed to treat women) and fears of getting infected while travelling, which had discouraged family members from supporting disabled women to visit health centres and hospitals. The COVID-19 DRM (2020) survey report identifes several subgroups of the disability population that experienced intersectional discrimination during the early stages of the pandemic. These include women, children, homeless people, those from indigenous communities and those living in rural or remote areas. For example, the report notes a lack of government measures to protect the health and safety of homeless disabled people, especially children. As one Nigerian DPO representative observed, ‘children (with disabilities) and their parents are still in the street with no face masks, no social distancing. Their lives are in danger’ (p.  38). Some respondents reported that governments had responded to this situation by detaining disabled homeless people, against their will, within institutional settings that were often inaccessible and unsafe. Another issue highlighted by the COVID-19 DRM (2020) survey was the increased risk of sexual violence and abuse arising from the pandemic due to many disabled women and girls being isolated at home with abusive family members, with limited access to police stations, women’s shelters and

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trauma counselling. There is evidence of increased violence against women generally since the start of the pandemic, with reported cases having doubled in some countries (UN, 2020b), and the survey fndings suggest that this phenomenon is likely to have disproportionately impacted on disabled women and girls. This conclusion is supported by a study conducted in Nepal, which found that the heightened risk of gender-based violence that disabled women and girls are typically exposed to had been further compounded by COVID-19, with many experiencing ‘domestic violence, harassment, threat, assault, and rape within families and communities even in public quarantine centers’ (Gurung, 2021, p. 1918). This study also noted that the impact of gender-based violence during the pandemic had been even greater for disabled women from indigenous communities, who were situated right at the bottom of the social hierarchy, often lived in remote areas and faced particular difculties in accessing medical and legal services. Difering experiences by impairment type An important diferentiating factor among disabled people is impairment type, and some studies have found that those with sensory, intellectual and psychosocial impairments in particular have experienced additional marginalisation in relation to their impairment-based needs during the pandemic. For example, the widespread use of face masks has created new communication barriers for people with hearing impairments who rely on lip reading (Shakespeare et al., 2021) while those using sign language have been unable to beneft from facial expressions, which are often an aid to understanding (Gulyani (2021). The implementation of social distancing measures, with physical contact widely discouraged, has created particular issues for people with visual impairments, who frequently rely on touch for orientation purposes. In Kenya, for example, study participants with visual impairments reported that physical assistance was often not forthcoming from members of the public due to fears of contracting the virus (Rohwerder et al., 2021). This study also revealed that social distancing measures had impacted on people with less visible impairments, who found that authorities were often less understanding when they unintentionally violated social distancing rules. The impact of social distancing rules on children with psycho-social impairments in India was highlighted by the NCPEDP (2020) survey, as revealed by the following testimony from a parent of a child with autism.

Social distancing and autism I have an autistic son who is 10 years old. The COVID-19 situation has taken away all his friends. I am a teacher who, along with the other staf, got stuck here in the campus. . . . Most of the students have been sent

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home. But the others who are here have stopped playing with my son as he is not able to maintain physical distance. This has scared the other parents who are not letting their children go anywhere near my son. The poor child is not able to understand why his friends run away the moment they see him coming. Some of the parents have even stopped talking to me as they don’t want to be associated in any way with my child (p. 23).

People with intellectual impairments may fnd it difcult to clearly express their symptoms to carers and medical staf due to communication difculties, potentially leading to treatment delays and increasing their vulnerability to viruses such as COVID-19 (Wickenden et al., 2021). A report by Inclusion International (2021) documents the often devastating impact of COVID-19 on people with intellectual impairments, based on evidence collected through a webinar series and a member survey. The survey found that 54 per cent of members felt that their country’s response to the pandemic was not inclusive of people with intellectual impairments and their families. The report goes on to present numerous testimonies of exclusion, including the termination or reduction of formal support services (such as respite services), the breakdown of informal support arrangements (such as peer groups), exclusion from education, loss of jobs and denial of access to essential services and information. The lack of accessible information was highlighted by one survey respondent, a self-advocate from Mexico.

Lack of accessible information There is still a lack of resources to help us understand what is going on and how we can be taking care of ourselves and our families in regard to COVID. I haven’t seen many pictograms or any guides around the city or on the news that explains to us what is really happening. The resources are inadequate for intellectually disabled people. It is very important for TV broadcast and radio to give information to everyone in simple language, so all intellectually disabled people can understand (Inclusion International, 2021, p. 15).

Disability-inclusive responses The studies reviewed in the previous section are in line with a growing body of evidence suggesting that COVID-19 has had a disproportionate

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impact on disabled people. It is therefore essential that governments develop disability-inclusive responses to COVID-19 and future pandemics to ensure the safety and protection of disabled people in situations of risk, in line with their commitments under Article 11 of the CRPD (United Nations, 2006), and to ensure that disabled people are not left behind as countries recover from the pandemic, in line with the 2030 Agenda for Sustainable Development (United Nations, 2015). This requires a twin-track approach,2 involving the mainstreaming of disability into all pandemic responses and targeted measures designed to meet specific needs that general measures cannot adequately address (UN, 2020a). Disability-inclusive responses need to take account of intersectional discrimination faced by many disabled people, as well as differing impairment-based needs. This section outlines some of the measures that could be considered as part of a disability-inclusive response to future pandemics. Accessible information Public health information, including details of pandemic response measures, should be provided in ways that are fully accessible to disabled people with specifc communication needs. The WHO (2020) recommends a wide range of measures, such as including captioning and sign language for live recordings and converting public health materials into ‘easy read’, large print and braille formats. As the evidence reviewed in this chapter has shown, it is also important to ensure that reliable and accessible public health information actually reaches disabled people. This should involve working with community stakeholders, especially disabled people’s organisations, to disseminate information within ‘hard to reach’ populations. Inclusive health responses Health clinics and hospitals need to develop inclusive practices to ensure that disabled people are able to access appropriate health and rehabilitation services on an equal basis with others. This may involve ensuring that buildings are physically accessible, providing healthcare information that is clear and accessible, promoting positive attitudes and raising awareness of disability rights among medical staf. The evidence reviewed in this chapter suggests that many disabled people have additional mental health and psycho-social support needs due to the difcult circumstances that they have experienced during the pandemic, including increased isolation, economic hardship and reduced recreational opportunities; so the provision of inclusive and accessible mental health services is also of paramount importance. The need to avoid discrimination, particularly in the context of scare resources, is

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highlighted in a WHO guidance document titled Disability Considerations during the COVID-19 Outbreak:

Medical decisions and disability rights Ensure that decisions on the allocation of scarce resources (e.g. ventilators) are not based on pre-existing impairments, high support needs, quality of life assessments, or medical bias against people with disability. (WHO, 2020, p. 10)

Social protection Universal social protection schemes for disabled people are quite common in the Global North but much less so in the Global South. In the Asia-Pacifc region, for example, it is estimated that fewer than 10 per cent of disabled people have access to disability benefts (ILO, 2017). Furthermore, where social protection schemes are in place in the Global South they are often barely sufcient to cover basic living needs (Banks et al., 2017). During pandemic times, when many disabled people are facing even greater economic hardship than usual and the extra costs associated with disability may have increased, it is thus essential to consider introducing or enhancing social protection initiatives (ILO, 2020). The WHO (2020) recommends that broader economic stimulus packages should incorporate fnancial support measures targeted at disabled people and their support networks, including lump sum payments, tax relief and deferral of common expenses, as well as fnancial compensation for family caregivers when they need to take time of work to care for disabled people. It may also be necessary to adjust delivery mechanisms to ensure that disabled people and their families receive benefts to which they are entitled in a timely manner (UN, 2020a). Such adjustments might include, for example, setting up electronic payment schemes or arranging home delivery for essential supplies. Inclusive education responses Education has been seriously disrupted throughout the pandemic, with many schools closing and resorting to teaching by distance learning. Remote learning strategies need to be accessible and inclusive to ensure that disabled children are not disadvantaged. They should ensure that disabled children have access to assistive technology, where necessary, and that children without internet access are not left out (UNICEF, undated). Education providers

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also need to take account of the potential psycho-social impacts of school closures for disabled children, such as the risk of neglect and other forms of abuse. Schools can help to mitigate these risks by maintaining communication with other community stakeholders, such as protection agencies and health service providers, even when schools are closed (ibid.). As children return to school following periods of closure, it is essential to ensure that those who have fallen behind are supported to catch up with their learning, and that the support systems that many disabled children rely on within schools are quickly and fully re-established. Inclusive employment responses Employment patterns have altered signifcantly during the pandemic, with increased working from home and the widespread use of remote conferencing. These shifts may potentially beneft disabled people but only if new working arrangements take account of their needs. For example, home working arrangements need to ensure that reasonable adjustments are in place for disabled workers at home, just as they should be in the workplace (ILO, 2020) while videoconferencing platforms need to be fully accessible. As people gradually return to the workplace, it is important to recognise that some disabled workers may need to work from home for longer periods due to increased vulnerability to the risk of infection (UN, 2020a). In the Global South, many disabled people run their own small enterprises in the informal sector, and they may need targeted support to protect their businesses (UN, 2020a). Community support Many disabled people living in the community rely on support services, such as personal assistance, communication support and peer group support. Disability-inclusive responses should aim to ensure the continuation of these services where possible and the safety of those involved in delivering them (ibid.). Various measures can be adopted in relation to this, such as classifying those providing support as keyworkers during lockdown periods. Ofcial responses can also include support for informal community-based initiatives, such as volunteer schemes, which often provide support to vulnerable people with essential tasks such as grocery shopping and collecting medication. The evidence reviewed in this chapter suggests that many disabled people have struggled to access basic supplies, such as food and medication, during the pandemic. It vital to ensure that emergency measures are in place to facilitate the supply of these essential items, especially to those living in remote or rural areas. As discussed earlier in this chapter, many disabled people have been exposed to a heightened risk of abuse, neglect and violence during the pandemic, especially when they were shielding or when lockdowns or curfews were imposed. Even during pandemic times, there must be systems in place to ensure that those who are considered to be at greatest risk can be monitored,

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concerns reported and interventions made as necessary. The COVID-19 DRM (2020) survey report recommends measures such as the provision of ‘women’s shelters, social workers, trauma counselling, and other supports for survivors of domestic violence and sexual abuse’ (p. 40). Supporting disabled people living in institutions Special attention should be focused on disabled people living in institutional settings, such as care homes, hospitals and prisons, as they are potentially exposed to higher risks of contracting COVID-19 and may be disadvantaged by institutional measures adopted to control the virus (WHO, 2020). To safeguard disabled people, the following points are worthy of consideration: • • •

• •

•

Institutions need to ensure that vital support mechanisms, including family and peer group support networks, are not broken. Institutions need to ensure that disabled people are able to access essential services, such as health services and mental health support. Infection control measures, such as the use of personal protective equipment, should take account of impairment-based needs. For example, the use of face shields instead of masks may help to ensure that people with hearing impairments are still able to lip-read (UN, 2020a). All information provided must be clear and accessible, so that disabled people understand the state of the emergency and know how to keep themselves safe (COVID-19 DRM, 2020). Independent monitoring systems and robust complaints mechanisms should be in place, ideally allowing access to human rights authorities, to ensure that disabled people are safe and free from discrimination (COVID-19 DRM, 2020). Measures should be adopted to address isolation and anxieties arising from the loss of contact with the outside world, especially friends and relatives.

Consultation and collaboration Pandemic responses can be truly disability-inclusive only if they involve meaningful collaboration with disabled people themselves and the organisations that represent them. The inclusion of disabled people as co-creators of disability-inclusive responses can help to turn a crisis into an opportunity for a more sustainable and inclusive future (ILO, 2020). It is vital to learn from the experiences of disabled people during the COVID-19 pandemic to ensure that mistakes are not repeated when future pandemics occur. It is also important to recognise diversity among disabled people and ensure those who are most marginalised, such as women and girls, homeless people, those with intellectual or psycho-social impairments and those living in humanitarian settings, also have a voice. DPOs are uniquely placed to raise awareness of disability issues during a crisis such as COVID-19 and to advocate on behalf of their members.

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These representative organisations exist at all levels of society, from the local community level through to the national and international levels, so can potentially contribute to disability-inclusive responses at all levels. The IDA (2021) survey revealed that 41 per cent of respondents had received at least one type of support from their local DPO, such as the provision of accessible information on the pandemic and public services available, psycho-social support, employment advice and the provision of essential goods and services. The disability organisation survey also highlighted the crucial role that DPOs had played during the pandemic (Cobley, 2022). They had highlighted discrimination, identifed needs and provided critical information and support to their members and benefciaries, often helping to fll the gaps in mainstream service provision. Several organisations had organised home delivery of essential supplies and set up online services, such as tele-counselling and tele-rehabilitation, while others had instigated new advocacy and awareness-raising initiatives. In India, for example, the Samarthanam Trust had launched a campaign to increase vaccination rates among disabled people. Also, the COVID-19 DRM (2020) survey report provides several examples of how DPOs have played a vital role in the pandemic response, including the following: • • •

The Rwanda National Union of the Deaf (RNUD) supported the Rwandan government by translating inaccessible information (using sign language and simplifed videos) and sharing it on social media platforms. A Moldovan DPO set up a 24/7 complaints helpline for disabled people living in institutions and issued mobile phones to self-advocates within the institutions, enabling them to easily report concerns. DPOs in Palestine, along with NGOs and UN agencies, supported the government by providing PPE and hand sanitisers to institutions.

Case study 11.1 describes the work of a DPO based in the Masaka District of Uganda, which has provided a lifeline to disabled people living with HIV/ AIDS and tuberculosis within the community, many of whom were faced with a desperate struggle for survival once the pandemic took hold.

Case Study 11.1: DPO response to the COVID-19 pandemic in Uganda The Masaka Association of Persons with Disabilities living with HIV and AIDS (MADIPHA) was frst registered in 2009 as a peer support group for fve disabled people, formed as part of a project being implemented by the National Union of Disabled Persons of Uganda (NUDIPU) to raise

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awareness of HIV/AIDS among disabled people. Since then, the organisation has grown into a network comprising fve local district associations and supporting over 500 members living with HIV/AIDS and tuberculosis to live positively and safely, access vital treatment and drug therapy and build their livelihoods. As the scope of the organisation has widened, Community Peer Monitors working on a voluntary basis have played a key role in identifying the needs of members at the local level and linking them up with appropriate services. MADIPHA also engages in advocacy work, aimed at raising awareness of disability and HIV/AIDS among key community stakeholders, such as health service providers and traditional leaders, to reduce stigma and discrimination within the community. They have engaged with local sub-county and district councils, leading to the formulation of several by-laws on HIV and tuberculosis prevention, treatment and control, which are inclusive of disabled people. The organisation aims to extend its infuence in the future by triggering the growth of similar associations across Uganda and through engaging with international agencies, such as the Joint United Nations Programme on HIV/AIDS (UNAIDS), to raise the profle of disability in their work. The onset of COVID-19 initially had a devastating impact on MADIPHA, spreading fear and leading to the immediate closure of the offce as members and staff isolated themselves in their homes. The Executive Director of MADIPHA, Richard Musisi, takes up the story: When the pandemic came last year everyone was scared, including us. We didn’t know what to do. We were told to go home and stay at home, so we closed our offces and went back home. But after one or two weeks our members started calling us, they didn’t know what to do. By that time the information was not very clear – no one knew the right information – and of course everyone thought, each of us, that we were going to die. They were calling us due to fear, due to receiving false information. Others were locked into their houses, they were not able to move, so it was really bad and scary. From our side, as the leaders of the organisation, we needed to fnd a way of supporting our members. They were putting all their trust in us to save them, so we needed to fnd a way. Many of them were not able to access their treatments and some did not have anything to eat by that time so they were in a terrible state. That’s why we needed to (continued)

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Disability and the COVID-19 pandemic come out. A few of us came back to the offce and we began working. We linked up with the Community Peer Monitors to see how we could support our members who were locked down in their houses. Luckily enough we received a grant through the Disability Rights Fund and two international partners – the Danish Association of the Physically Disabled (DHF) and ViiV Healthcare in the UK – to support our COVID response. Those grants enabled us to work with the health facilities, so that they could deliver treatment drugs, and to provide food relief. We also provided smart phones with air time to our Peer Monitors, so that they could connect with us and keep us informed about what was happening in the community. We provided them with transport, so that they could reach the members and deliver essential items, such as soap, sanitisers and masks. We also started running campaigns on local radio to ensure that our members were receiving the right information, and also to encourage community stakeholders, including the Government tasks forces that were working on COVID at that time, not to leave out persons with disabilities.

Source: Zoom interview with Richard Musisi, MADIPHA Executive Director, on 29 July 2021.

Refection exercise 11.1 Imagine that you were setting up a new COVID-19 testing and vaccination centre in a low-income setting. How would you make the new service as disability-inclusive as possible? Consider the full range of barriers that disabled people may encounter, including those related to awareness, information, physical access, mobility, transportation, personal support needs and attitudes.

While DPOs have clearly played a vital role in supporting disabled people during the COVID-19 pandemic, it is vital to ensure that they are even better placed to support disability-inclusive responses to future pandemics. In line with the CRPD, which requires State Parties to ‘closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organisations’ (UN, 2006, Article 4, Para. 3), this means ensuring that they are fully involved at all stages of the planning and implementation of ofcial responses to public emergencies. As

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the IDA (2021) survey report points out, this also implies that they should receive adequate funding to enable them to build their capacities to engage efectively and to respond to the needs of their members.

Summary of key points •

• • • •

Disabled people have experienced a wide range of socio-economic deprivations since the start of the COVID-19 pandemic, reinforcing social exclusion and marginalisation. Many have been denied access to health services, cut of from their support networks, excluded from education and sufered great economic hardship. Some disabled people have experienced even higher levels of discrimination due to the intersection of disability with other social identities, such as gender, age, ethnicity, homelessness and institutional living. State responses to the pandemic have failed to adequately take account of the needs and priorities of disabled people. Disability-inclusive policies and practices are needed to ensure that long-term recovery processes lead to more inclusive societies. Disabled people and their representative organisations must be supported to play a central role in helping to ensure that ofcial responses to future pandemics are more disability-inclusive.

Discussion questions 1) How have disabled people experienced the COVID-19 pandemic in your own country? 2) To what extent have ofcial responses to the pandemic in your own country been disability-inclusive? 3) How can DPOs be empowered to play a more prominent role in future pandemic response processes?

Suggested further reading Cobley, D.S. (2022) ‘Rising to the challenge: Disability organisations in the COVID-19 pandemic’. In Disability and Society. DOI: 10.1080/096875 99.2022.2114884 COVID-19 DRM (2020) Disability Rights during the Pandemic. COVID19 Disability Rights Monitor. Retrieved on 21 July  2021 from www. internationaldisabilityalliance.org/sites/default/files/disability_rights_ during_the_pandemic_report_web_pdf_1.pdf International Disability Alliance (IDA) (2021) Survey on the Experiences of Persons with Disabilities Adapting to the COVID-19 Global Pandemic. Geneva and New York: IDA. United Nations (2020) Policy Brief: A  Disability-Inclusive Response to COVID-19. Geneva: United Nations.

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Notes 1 See Chapter  6 for a deeper discussion around the digital divide and its consequences for disabled people. 2 See Chapter 5 for an explanation of the twin-track approach.

References Banks, L.M., Morgon, H. and Pollack, S. (2017) ‘Poverty and disability in low- and middle-income countries: A systematic review’. In PLoS One 13(9): 1–19. Cobley, D.S. (2022) ‘Rising to the challenge: Disability organisations in the COVID19 pandemic’. In Disability and Society. DOI: 10.1080/09687599.2022.2114884 Comas-Herrera, A., Zalakain, J., Lemmon, E., Henderson, D., Litwin, C., Hsu, T., Schmidt, A., Arling, G., Kruse, F., and Fernandez, J.-L. (2020). ‘Mortality Associated with COVID-19 in Care Homes: International Evidence’. In International Long Term Policy Care Network. London: Care Policy and Evaluation Centre, London School of Economics. COVID-19 DRM (Disability Rights Monitor) (2020) Disability Rights During the Pandemic Retrieved on 21 July  2021 from www.internationaldisabilityalliance. org/sites/default/fles/disability_rights_during_the_pandemic_report_web_pdf_1. pdf Gulyani, R. (2021) ‘Making themselves heard: Deaf people in India during the global COVID-19 pandemic’. In Disability and the Global South 8(1): 1947–1957. Gurung, P. (2021) ‘COVID-19 in Nepal: The impact on indigenous peoples and persons with disabilities’. In Disability and the Global South 8(1): 1910–1922. IDA (International Disability Alliance) (2021) Survey on the Experiences of Persons with Disabilities Adapting to the COVID-19 Global Pandemic. Geneva and New York: IDA. ILO (International Labour Organisation) (2017) World Social Protection Report, 2017–19: Universal Social Protection to Achieve the Sustainable Development Goals. Geneva: ILO. ILO (International Labour Organisation) (2020) No One Left Behind, Not Now, Not Ever: Persons with Disabilities in the COVID-19 Response. Geneva: ILO. Inclusion International (2021) Global Agenda for Inclusive Recovery: Ensuring People with Intellectual Disabilities and Families Are Included in a Post-COVID World. London: Inclusion International. Retrieved on 27 July 2021 from https:// drive.google.com/fle/d/1oqPJVAF4wI1ZD7V4b-S6npSxe5YP80vE/view Mehrotra, N. and Soldatic, K. (2021) ‘COVID-19 in South Asia: State practices, responses and the experiences of persons with disabilities within the region’. In Disability and the Global South 8(1): 1873–1879. NCPEDP (National Centre for Promotion of Employment for Disabled People) (2020) Locked Down and Left Behind: A Report on the Status of Persons with Disabilities in India During the COVID-19 Crisis. New Delhi: NCPEDP. Penal Reform International (2020) Global Prison Trends 2020. London: Penal Reform International. Rohwerder, B. (2018) Disability Stigma in Developing Countries. K4D Helpdesk Report. Brighton: Institute for Development Studies. Rohwerder, B., Njungi, J., Wickenden, M., Thompson, S. and Shaw, J. (2021) “This Time of Corona Has Been hard” – People with Disabilities’ Experiences of the

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COVID-19 Pandemic in Kenya. Brighton: Institute of Development Studies. Retrieved on 27 July  2021 from https://opendocs.ids.ac.uk/opendocs/bitstream/ handle/20.500.12413/16607/IW%20COVID%20Kenya%20report.pdf?sequence= 1&isAllowed=y Shajahan, S. (2021) ‘Life becomes harder: Intersectional feminist lens to dis/abled experience of women in Afghanistan during Covid-19 pandemic and post-covid development context’. In Disability and the Global South 8(1): 1880–1891. Shakespeare, T., Ndagire, N. and Seketi, Q.E. (2021) ‘Triple jeopardy; disabled people and the COVID-19 pandemic’. In The Lancet 397. UN (United Nations) (2006) Convention on the Rights of Persons with Disabilities and Optional Protocol. Washington: United Nations. UN (United Nations) (2015) Transforming Our World: The 2030 Agenda for Sustainable Development. Retrieved on 21 September 2021 from www.un.org/pga/ wp-content/uploads/sites/3/2015/08/120815_outcome-document-of-Summit-foradoption-of-the-post-2015-development-agenda.pdf UN (United Nations) (2020a) Policy Brief: A  Disability-Inclusive Response to COVID-19. Geneva: United Nations. UN (United Nations) (2020b) Policy Brief: The Impact of COVID-19 on Women. Geneva: United Nations. UNDESA (United Nations Department of Economic and Social Afairs) (2018) Disability and Development Report: Realising the SDGs, by and for Persons with Disabilities. New York’: United Nations. UNICEF (United Nations Children’s Fund) (undated) All Means All – How to Support Learning for the Most Vulnerable Children in Areas of School Closures. Retrieved on 29 July 2021 from https://sites.unicef.org/disabilities/fles/All_means_ All_-_Equity_and_Inclusion_in_COVID-19_EiE_Response.pdf WHO (World Health Organization) (2020) Disability Considerations During the COVID-19 Outbreak. Geneva: WHO. Wickenden, M., Thompson, S., Rohwerder, B. and Shaw, J. (2021) Taking a DisabilityInclusive Approach to Pandemic Responses. IDS Policy Brief. Issue 175. Brighton: Institute of Development Studies. World Bank (2020) Pivoting to Inclusion: Leveraging Lessons from the COVID-19 Crisis for Learners with Disabilities. Washington: World Bank.

12 Researching disability

As discussed in the introduction to this book, there is growing international recognition of disability as a priority development issue. This is refected in the adoption and widespread ratifcation of the CRPD, which emphasises ‘the importance of mainstreaming disability issues as an integral part of relevant strategies of sustainable development planning’ (UN, 2006, preamble (e)). The 2030 Agenda for Sustainable Development contains explicit references to disability in targets relating to fve of the Sustainable Development Goals,1 providing further evidence of the rising profle of disability as an issue of critical importance to development planners. It is widely recognised, however, that there remains a dearth of empirical evidence on which to build the policies and programmes that are necessary to meet the needs of disabled people and support their full participation in society. This is especially true in relation to the Global South, where the majority of disabled people live (Meekosha, 2011). The World Report on Disability (WHO and World Bank, 2011), which gathered together the best scientifc evidence available at the time on a wide range of disability issues to support governments and civil society in their eforts to implement the CRPD, clearly highlights the need for more research. The report observes a lack of internationally comparable data and major research gaps, often resorting to making fairly general recommendations in the absence of hard evidence. In response to this problem, the report calls for data from a wider range of sources, including disabled people’s organisations (DPOs), to support national policymaking and, in particular, for more qualitative research on the ‘lived experiences of disabled people’ (p. 46). A list of specifc research gaps, as identifed in the World Report, is shown in Box 12.1.

Box 12.1

Research gaps identifed in the World Report on Disability

Research is essential for increasing public understanding about disability, informing disability policy and programmes and efciently DOI: 10.4324/9781003256038-12

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allocating resources. This World Report recommends several areas for research on disability including: • • • • • •

The impact of environmental factors (policies, physical environment, attitudes) on disability and how to measure it; The quality of life and well-being of people with disabilities; Barriers to mainstream and specifc services and what works in overcoming them in diferent contexts; Accessibility and universal design programmes appropriate for low-income settings; The interactions among environmental factors, health conditions, and disability – and between disability and poverty; The cost of disability and the cost-efectiveness of public spending on disability programmes. Source: WHO and World Bank, 2011, pp. 267–268.

While there is clearly a lack of research on disability in a number of areas, there is a particularly acute need for research that captures the voices of disabled people themselves, refecting their own priorities, experiences and viewpoints rather than the priorities of research funding bodies and the assumptions of researchers, however well-intentioned they may be. This fnal chapter begins by highlighting concerns expressed by many from within the disability movement around the historical impact of disability research, which has often been perceived as negative and even harmful. It then explores two particular research paradigms that have the potential to address these concerns to some extent: frstly, the now well-established paradigm of participatory research, which has its roots within general qualitative research methodology; secondly, a relatively new research paradigm, known as emancipatory research, which has emerged from within the disability movement itself. Drawing on some of the key principles that are common to both of these approaches, the chapter argues that supporting the meaningful participation of disabled people at all stages of the research process is vital to ensuring that research agendas are more refective of their true priorities.

Historical impact of disability research There is a frm body of opinion, particularly among disabled people themselves, to suggest that carrying out research on disability can actually be oppressive and disempowering for those disabled people who are intended to beneft from the research. This has especially been the case where researchers have viewed disability purely as a medical issue and adopted the

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objective and detached standpoint that is typically required by conventional research models. Dissatisfaction with traditional approaches can be traced right back to the 1960s, when residents at the Le Court Cheshire Home in Hampshire were the subjects of a three-year research project (Miller and Gwynne, 1972), examining various aspects of their daily lives. In what came to be regarded as a landmark moment in the history of the disability movement in Britain, the fnal report rejected the residents’ complaints and reinforced the institutional practices that were already in place, even though the researchers themselves had described institutional life as a ‘living death’ (Barnes and Mercer, 1997, p.  2). The sense of betrayal that many of the residents felt was eloquently expressed by Paul Hunt (1981), who went on to become a founder member of the Union of Physically Impaired Against Segregation (UPIAS),2 in an article titled Settling Accounts with the Parasite People.

Researchers as parasites Long before publication of their research fndings . . . it was clear that we, the residents, had been conned. It was clear to us that [the researchers] were defnitely not on our side. They were not really on the side of the staf either. . . . They were in fact basically on their own side, that is the side of supposedly ‘detached’, ‘balanced’, ‘unbiased’ social scientists, concerned above all with presenting themselves to the powers-that-be as indispensable. Thus the fundamental relationship between them and the residents was that of exploiters and exploited. (Hunt, 1981, p. 38)

Several others have commented on the negative impact of much of the research on disability that has been conducted in the past. For example, Shakespeare (1996) describes the frequent ‘lack of ft’ between disabled people’s descriptions of their own experiences and the ways in which academic researchers articulate those same experiences. In a self-refective examination of some of the typical dilemmas facing disability researchers, Moore et al. (1998) provide several examples from their own experiences that highlight the danger of allowing service providers and other non-disabled stakeholders to exert such an infuence over research processes that the views of disabled people themselves are overshadowed or even ignored altogether. They attribute this tendency to the ‘minority status’ aforded to disabled people within society, claiming that ‘identifcation with minority and oppressed groups impinges on a person’s right to be heard by the majority’ (p.  36).

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However, perhaps the most vociferous critic of conventional approaches to disability research has been Mike Oliver.

Research as a violation Disabled people have come to see research as a violation of their own experiences, as irrelevant to their needs and as failing to improve their material circumstances and quality of life. (Oliver, 1992, p. 106)

Historically, the infuence of the individual model has heavily contributed to the oppressive nature of disability research (Oliver, 1992). A  classic example of this infuence was a survey carried out by the Ofce of Population Censuses and Surveys (OPCS), on behalf of the UK government, which involved face-to-face interviews with over 2,000 disabled people, during which they were asked questions such as ‘Can you tell me what is wrong with you?’ (Martin and White, 1988). The fundamental design faw here, as Abberley (1992) points out in a stinging critique of the survey, is that questions such as this refect an ‘individualistic “personal tragedy” approach to disability’ (p. 154) rather than exploring the various ways in which society disables people with impairments. Swain and French (2004) claim that most disability research has tended to refect this view of disability, which leads to questions being framed in such a way as to emphasise the tragic nature of disability, sometimes even calling on disabled people to question whether they feel that their lives are worth living at all. In a similar vein, Moore et al. (1998) contend that research based on the individual model will ‘inevitably recycle individual-blaming images of disabled people’ (p.  12). They conclude that disability researchers are justifed in counteracting this bias by openly aligning themselves with the views of the disabled people who are intended to beneft from their research and declaring from the outset that research is intended to promote disability rights. In more recent times, disability research has increasingly refected an acceptance of the social model as a starting point for research, with an emphasis on examining the disabling role of society, rather than focusing on the limitations of the individual body. As Oliver (1990) astutely points out, such an emphasis might lead to a question such as ‘Can you tell me what is wrong with you?’ being reframed as ‘Can you tell me what is wrong with society’? (p.  8). Table  12.1 highlights some of the main diferences between research based on the individual model and research based on the social model.

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Table 12.1 Individual versus social model as a starting point for research Individual Model

Social Model

Disability is located within the individual. Focus is on impairment. Functional defciencies, related to impairment, are the problem. Solutions are likely to focus on medical treatment and rehabilitation.

Disability is located within society. Focus is on the environmental context. Societal discrimination and prejudice are the problem. Solutions are likely to focus on the removal of disabling barriers.

Participatory research Participatory research is often associated with the interpretive social science paradigm, which rejects the notion of a fxed, independent or ‘objective’ social reality. Instead, social reality varies from one person to another, and the purpose of research is to uncover the varying ways in which people understand and experience the social world themselves. Participatory approaches seek to capture these subjective views and experiences by involving research participants as equal partners in the research process, requiring a fundamental shift in the location of power from researchers to participants. This relocation of power – a key feature that distinguishes participatory from more conventional top-down research methodologies (Cornwall and Jewkes, 1995) – is refected in the use of the term participants rather than subjects. Participatory research is carried out with participants, rather than on subjects, recognising that participants can potentially play an important role in terms of infuencing the design of the research, the issues to be addressed and the uses to which research fndings will be put, rather than simply being viewed as a source of raw data. Participatory research methods have a number of advantages over conventional approaches. The active involvement of local people in analysing their own situations can help to break down the mystique surrounding research, as well as instilling a sense of self-confdence and self-reliance in participants (Chambers, 1997). Also, it has been argued that participatory research is more likely to identify appropriate solutions to problems than conventional research methods, since the knowledge and intelligence of those who really understand the issues is validated through the research process (Laws et al., 2003). It is perhaps not surprising, therefore, that participatory research methods have increasingly been adopted by disability researchers. Such methods have the potential to break down the disabling barriers and personal inhibitions (often arising from the internalisation of negative attitudes and disability-related stigma) that limit opportunities for disabled people to share their real-life experiences, express their feelings and raise the issues that are of most importance to them. While not inherently associated with the social model, the participatory research paradigm fts nicely with ideas

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of inclusiveness that underpins the social model, as well as the familiar slogan of the disability movement – ‘nothing about us, without us’. Participatory Rural Appraisal One participatory approach that has often been adopted in the feld of international development is Participatory Rural Appraisal (PRA), sometimes referred to as Participatory Learning and Action (PLA), which is defned by Robert Chambers in his seminal work Whose Reality Counts:

Participatory rural appraisal PRA is a growing family of approaches and methods to enable local people to share, enhance and analyse their knowledge of life and conditions, and to plan, act, monitor and evaluate. (Chambers, 1997, p. 102)

PRA methods, which often involve the use of practical, analytical tools, such as mapping, ranking or scoring, have been widely implemented by development practitioners, as well as researchers, for several decades now, with the aim of drawing on the knowledge and experiences of local people and putting them at the centre of the development process right from the outset. In South India, for example, the World Bank supported the State Government of Tamil Nadu in launching a large-scale poverty reduction programme (known as ‘Vazhndhu Kaattuvom’)3 in 2005, for which potential benefciaries were identifed through a process known as ‘participatory identifcation of the poor’ (Cobley, 2013). This involved community members meeting together to map out whole villages, often drawn in the sand with sticks, so that they could identify the most vulnerable people, including chronically ill and disabled people. Communities would then elect a Village Poverty Reduction Committee, including at least one disabled representative, which would be responsible for allocating project funds in line with local needs and priorities. This programme, based on the principles of participation and empowerment, efectively enabled whole communities to take a measure of control over their own development by putting resources at their disposal and facilitating community decision-making with the active involvement of disabled people. Participatory action research Participatory action research (PAR) is typically practice-based and aims to transform both theory and practice in relation to each other (Kemmis and

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McTaggert, 2003). PAR involves researchers and participants working collaboratively to bring about some form of social change that is initiated by participants and can thus be viewed as a ‘collaborative process of research, education and action explicitly oriented towards social change’ (Kindon et al., 2009, p. 90). Researchers act as facilitators and enablers, with participants taking a lead role in directing the project from start to fnish, as explained below.

Participatory action research PAR aims to renegotiate the position of ‘the researched’ to one of co-researchers, involving participants in every stage of the research process from the design stage to the writing of the research results. (Kitchin, 2001, p. 63)

Kitchin (2002) adopted the PAR method himself in three projects examining accessibility issues in Ireland. He acknowledges, however, that while the projects did achieve some successful outcomes, such as enabling disabled people who took part to learn new skills and contribute to wider debates, the goal of ‘equal partnership’ was not achieved. Participants were reluctant to fully commit themselves to the projects, for reasons such as lack of confdence and limited time availability. Another problem identifed by Kitchin was the minimal level of project funding, which did not allow for the support needs of disabled participants to be fully met. As a result, the three projects efectively became ‘semi-PAR projects’, with the involvement of disabled participants limited to the early stages of the process, including setting up the projects and data collection. Kitchin himself was left to do most of the analysis and writing up, and he concedes that ‘almost inevitably, given my familiarity with various literatures and professional research experience, the projects have refected and been shaped by my opinions’ (p. 9). A more recent study conducted in Burkino Faso (Bezzina, 2022), involving the use of participatory video and diagramming methods, provides an excellent example of PAR. In this study, a group of seven disabled people, aged between 23 and 42 years, frst worked together to create a diagram illustrating their lived experiences and identifying a set of issues (or research questions), which they wished to explore within the broader context of the research objectives. The exercise helped to build a sense of solidarity among participants and a willingness to reveal their own stories, as well as generating the diagram. The next step involved them analysing their own

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diagram and discussing potential solutions to the issues identifed, which mainly revolved around various types of discrimination that they had experienced within their communities. Finally, participants were trained in the use of flm equipment and supported to plan and create a short flm, which was given the title Disability: It is not the end of the world. The flm aimed to challenge negative community perceptions, by showcasing the successes of disabled people, and present ways in which development agencies could work with them more efectively. The fnal stages of the project involved editing the flm and arranging for it to be screened on at least two occasions. While Bezzina acknowledges that these fnal stages were less participatory, due to practical constraints, it is clear that the project as a whole involved a high degree of participation throughout, with participants deciding on the content of the flm and creating it themselves. The public screenings created a space for community dialogue around disability and an opportunity to engage with local authority representatives, who were present at the second screening, on issues of concern. Furthermore, participants retained ownership of both the diagram and the flm footage, which they would be able to copy and disseminate further as they wished.4 Putting participation into practice Whichever approaches are adopted, it is important to ensure that participation is as meaningful as possible rather than tokenistic. As Kitchin’s (2002) honest and realistic account illustrates, some disabled people lack the confdence or motivation to take part in research while others have impairment-based needs that may hinder their participation if they are not fully accounted for. The checklist provided in Box 12.2 identifes some of the issues that often need to be considered, to facilitate the full and meaningful participation of disabled people in a research project.

Box 12.2 • • • •

Checklist for facilitating meaningful participation

Clearly establish the nature and limits of participation in relation to the research project; Ensure that information about the research project is provided in accessible formats, appropriate to the impairment-based needs of participants; Proceed only with fully informed consent and on the understanding that participants can withdraw at any stage; Be wary of generating unrealistic expectations as to the expected outcomes of the research or the likely benefts of participation;

264 • • •

• •

Researching disability Ensure that any facilities (e.g. rooms or equipment) to be used are physically accessible to all participants; Provide appropriate capacity-building support to facilitate full participation (such as confdence-building measures or training in research methods); Provide appropriate practical support to facilitate attendance and participation (such as assisting with transport arrangements for participants with mobility impairments, providing a sign language interpreter for participants with hearing impairments or simply allowing extra time for participants with intellectual impairments); Try to create a relaxed environment that encourages participants to feel at ease; Show respect for cultural traditions and practices.

The importance of showing respect for local culture and traditions – the fnal point on this checklist – can create tricky dilemmas, as the author experienced while attempting to conduct research in a participatory way with disabled people who had been afected by Typhoon Haiyan, a powerful and devastating storm that engulfed several provinces of the Philippines in 2013. This dilemma is described in Case Study 12.1.

Case Study 12.1: Research dilemma in the Philippines (An) ethical issue arose around confdentiality, given the tendency of family members and friends to crowd around during interviews and sometimes even to join in. This was an inevitable consequence of local contextual realities. Firstly, there was a lack of physical space to conduct interviews within local communities, particularly as many were still living in cramped temporary shelters. Available space was generally considered to be communal, at least for the family and often for neighbours as well, rather than private. Secondly, as in much of the majority world, where ‘community is often regarded as more important than the individual’ (IDDC, 2004, p.  4), community life in the Philippines is characterised by interdependence rather than by notions of individual freedom and privacy. To insist on privacy in such a context could be viewed as inappropriate or even culturally insensitive (Singal, 2010). Hence, it was necessary to accept the presence of onlookers while acknowledging the possible infuence that they could have on the interview fndings. It

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should also be noted, however, that my overwhelming impression was that interviewees did not appear to be at all inhibited by the presence of onlookers who, for the most part, simply listened in respectful silence. Most of the interviews were conducted in Filipino, and the presence of onlookers, some of whom had knowledge of English, may also have helped to militate against the risk of interview content being fltered by NGO feldworkers who were acting as interpreters. Source: Cobley, 2015, p. 693.

As this case study shows, it is sometimes necessary to adapt conventional methodologies to suit local contexts, even where this creates dilemmas arising from the need to demonstrate that ethical standards (often determined by academic bodies and funding councils located in the Global North) have been met. Grischow et al. (2021) provide further examples of such adaptations, drawing on feldwork carried out in Ghana on the oral history of disability rights. For example, they emphasise the importance of trust-building within communities where there are high levels of poverty and there is often a tendency to mistrust researchers. This was addressed through the involvement of local research assistants, who were well known within these communities, and hence more easily able to obtain informed consent and encourage participants to share their stories. Also, they decided to make cash payments to participants, sufcient to cover travel costs and to compensate them for their time, to avoid the risk of exploitation while ‘not ofering so much that the participants are unduly induced to participate’ (p. 171). While the principles of participatory research would appear to have much in common with the aims of the disability movement, some critics have argued that participation alone does not go far enough in terms of putting disabled research participants in control of the research process. Oliver (1997), for example, argues that ‘participatory and action research is about improving the existing social and material relations of research production; not challenging and ultimately eradicating them’ (p. 26). He goes on to conclude that disabled people whose lives are researched ‘remain on the wrong side of the oppressive social and material relations of research’ (p. 26). Oliver is among those who advocate an even more radical research paradigm known as emancipatory research.

Emancipatory research Emancipatory research aims to enable participants to take control of the whole research process, thus turning the balance of power between

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researchers and their subjects upside down. This concept, which has evolved from within the UK disability movement, really took shape in a special issue of the journal Disability, Handicap and Society (later renamed Disability and Society), which was published following a series of seminars and a national conference on researching disability in 1991. In one of the articles, titled Changing the Social Relations of Research Production, Oliver (1992) argued that if the goal of researching disability is emancipation, in line with the objectives of the disability movement, then the balance of power between researchers and disabled research subjects needs to be radically altered. Writing in the same special issue, Zarb (1992) goes even further. He argued that as well as changing the social relations of research, the material relations would need to be changed for disability research to be truly emancipatory. In other words, disabled people would need to be enabled to take control of the resources required for research, such as research funding, and to determine how these resources should be utilised. Zarb’s vision makes a clear distinction between emancipatory and participatory research, as highlighted in the following quotation.

Who is in control? [S]imply increasing participation and involvement will never by itself constitute emancipatory research unless and until it is disabled people themselves who are controlling the research. (Zarb, 1992, p. 128)

There has been much debate among academics within the feld of disability studies as to how to actually go about conducting emancipatory research (see, for example, Stone and Priestley, 1996; Barnes and Mercer, 1997; French and Swain, 1997; Albrecht et al., 2001). Stone and Priestley (1996) give perhaps the clearest guidance by outlining six core principles on which an emancipatory research project should be based. These principles are listed in Box 12.3.

Box 12.3

Six core principles of emancipatory research

1) The adoption of a social model of disablement as the epistemological basis for research production;

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2) The surrender of claims to objectivity through overt political commitment to the struggles of disabled people for self-emancipation; 3) The willingness to undertake research only where it will be of practical beneft to the self-empowerment of disabled people and/ or the removal of disabling barriers; 4) The evolution of control over research production to ensure full accountability to disabled people and their organisations; 5) Giving voice to the personal as political whilst endeavouring to collectivise the political commonality of individual experiences; 6) The willingness to adopt a plurality of methods for data collection and analysis in response to changing needs of disabled people. Source: Stone and Priestley, 1996, p. 706.

If a research project is to realise its emancipatory potential, then a further essential requirement is for its fndings to be disseminated as widely as possible. Barnes (2001) emphasises this point, providing several examples of research projects that have adhered, at least in part, to the emancipatory research paradigm and from which the dissemination of fndings has triggered signifcant outcomes. He claims, for example, that the widespread dissemination of fndings from a large-scale study conducted in 1989 by the British Council of Disabled People, on various forms of institutional discrimination faced by disabled people in the UK, played a ‘crucial role in getting anti-discrimination legislation onto the statute books in the UK’ (p. 15). Putting emancipatory research into practice Full adherence to Stone and Priestley’s rather daunting list of criteria for the production of truly emancipatory research may seem an unrealistic proposition to many involved in researching disability. On the question of objectivity, for example, declaring a political commitment to endorsing the views of the disability movement could leave disability researchers vulnerable to accusations of subjectivity or even bias (Barnes, 2001). However, as Barnes goes on to point out, all judgements and interpretations of data made by social science researchers are infuenced by a variety of forces, such as personal experiences and the political or cultural context. Kitchin (2002) makes an even stronger defence of researchers adopting inclusive research methodologies, arguing that these approaches may be even more academically rigorous than standard ‘expert’ methodologies because research participants are encouraged to verify fndings, thus helping to ensure that both data and interpretations are valid.

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Further, dilemmas may arise where disabled research participants do not themselves share the emancipatory objectives of the wider disability movement or a commitment to the social model of disability. For example, Singal (2010) warns that there may be a danger in placing too much emphasis on the social model in Southern contexts, where ‘disability is most likely the result of disease, malnutrition or other treatable or preventable factors’ (p. 422). Turmusani (2004) also questions the applicability of the emancipatory research paradigm in Southern contexts, pointing out that aspirations relating to individual or group liberation may be considered less important than the need for disabled people to contribute to the overall welfare of their families and communities. He goes on to argue that debates around researching disability need to ‘become more accommodating to include other views on disability and also become culture sensitive’ (p. 10). Stone and Priestley (1996) themselves concede that the imposition of Western conceptualisations may be ‘condemned for irrelevance where disabled people’s struggles revolve around daily survival rather than political emancipation’ (p. 711). The question of accountability is perhaps even more problematic. As Simone Aspis (2022) observes in relation to research with disabled people with learning difculties, it is the academics who generally ‘decide on areas of research, methods used, take control over the analysis and make recommendations’ (p.  157). Furthermore, much academic research is ultimately controlled by the funding bodies, donor agencies and academic institutions, mainly located in the Global North, that actually commission research. It is only by gaining control, or at least signifcant infuence, over these bodies that power can begin to change hands. Even if these institutions were to become more inclusive, however, there is no guarantee that those disabled people who were actually to fnd themselves in positions of power and infuence would be truly representative of the wider community of disabled people who participate in research projects. Thus, it is difcult to see how even those researchers who are intent on redressing the balance of power can, in practice, shift control of research production into the hands of disabled people and their organisations, especially those located in the Global South. As Swartz (2009) points out, however, DPOs have their own systems of producing knowledge and are often actively engaged in research themselves. Supporting DPOs to develop their own research capacities and set their own research agendas is thus crucial to ensuring that they gain greater control over the processes of research production (Bezzina, 2022; Swartz, 2009). There has been a recent growth in Southern research networks that can play a vital role in helping to ensure that research produced by DPOs has a real impact on disabled people’s lives. For example, the African Network for Evidence-to-Action on Disability (AfriNEAD), founded by the Centre for Disability and Rehabilitation Studies at Stellenbosch University in 2007, aims to develop strategic partnerships between DPOs and various stakeholders, including academic institutions, policymakers and the business community while supporting disabled people to act as lead researchers where possible (AfriNEAD, n.d.).

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Even if it were theoretically possible, as well as culturally appropriate, for a research project to strictly adhere to the criteria for emancipatory research, as articulated by Stone and Priestley, there is no guarantee that this would necessarily lead to emancipatory outcomes for disabled people. It is simply not possible to judge the emancipatory impact of a research project until sufcient time has elapsed for real and positive changes to disabled people’s lives to become apparent. It is interesting to note that, fve years after introducing the concept, Oliver (1997) himself acknowledged that [o]ne cannot ‘do’ emancipatory research (nor write methodology cookbooks on how to do it), one can only engage as a researcher with those seeking to emancipate themselves. (p. 25) Reciprocity, gain and empowerment Perhaps, the best way to approach the challenge of confronting oppression within the research process is to focus on what is achievable, as well as appropriate, within the context of a particular research project. When Oliver (1992) frst introduced the concept of emancipatory research, he highlighted three fundamental principles on which the new paradigm should be based. Firstly, ‘reciprocity’, which involves researchers being prepared to make themselves vulnerable and conduct research in an open and empathetic manner, so that data collection efectively becomes a twoway process of mutual sharing rather than a one-way process of extracting data. Secondly, ‘gain’, which raises the question as to who benefts from research, and how the benefts can be shared rather than appropriated by the researcher. Thirdly, ‘empowerment’, which involves the creation of a research environment that supports and enables participants to take the practical steps which they may need to take to empower themselves. This fnal principle is perhaps the most difcult to put into practice, given that empowerment can only really come from within (Freire, 1972), but certainly requires a willingness on the part of researchers to put their skills and knowledge at the disposal of participants rather than dictating how these attributes should be used. These three principles provide a simple framework that can be used to refect on one’s own research practice, one indeed that Oliver (1997) makes use of himself to refect on one of his own studies (Campbell and Oliver, 1996) around issues facing the UK disability movement. More recently, Amy Petersen (2011) makes use of this framework to refect on her study on the educational experiences of four young African American disabled women from economically disadvantaged backgrounds in the United States, with whom she initially felt that she had little in common and little to share. Her use of this framework to refect on how her approach changed during the course of the study is summarised in Case Study 12.2.5

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Case Study 12.2: Reciprocity, gain and empowerment In a self-refective article, Petersen (2011) examines her research study in relation to the principles of reciprocity, gain and empowerment.

Reciprocity Petersen describes how she was able to develop a more productive and positive relationship with participants by abandoning her initial view of herself as an expert, independent and objective researcher to make herself vulnerable. She was able to fnd common ground with one participant by sharing her own traumatic experiences of childbirth and to offer practical assistance to another on how she might go about resolving problems that she was having with public transport. In doing so, she felt that power shifted within the research relationship. Interviews became a ‘reciprocal dialogue that unfolded with less and less preconceived intent on my part and a greater willingness to follow the lead of the women and the twists and turns that characterised our conversations’ (p. 300).

Gain Petersen describes how she had initially felt a sense of urgency to complete the study quickly, so that she could enjoy the potential benefts of a degree, a new job and a publication to her name. During the course of the study, however, she came to realise that research has the potential to be of beneft to participants as well, not least through the process of validating their own experiences. One participant confrmed the importance of telling her story by asserting that ‘talking with you has helped me feel more confdent about what I believe about myself and what is possible for me’ (p. 300).

Empowerment Petersen refects on how the monosyllabic responses that characterised her initial interviews signifed a refusal on the part of participants to engage with her methods and to accept the objective, closed and professional stance that she had adopted as the researcher. When she abandoned her checklist of questions, shared more of herself as a person and began to explore ways in which the research might be of beneft to

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participants, she began to ‘create a context for empowerment’ (p. 301). In other words, she was able to foster a more constructive atmosphere within which participants felt able to think more deeply about their own personal circumstances and to explore ways in which they might take action to improve these circumstances.

The three basic emancipatory research principles of reciprocity, gain and empowerment can equally be applied to disability research projects that are conducted in the Global South. Singal (2010), for example, refects on a large-scale qualitative research study that explored the experiences, expectations and aspirations of young disabled people in India, involving interviews conducted by young, relatively inexperienced, local researchers. She describes how many of the participants valued the opportunity to share their feelings and experiences with other young people. Perhaps, even more importantly, participants were able to become ‘agents of change’ (p. 424) by revealing that they had interests and aspirations that did not refect the tragic view of disability that many of the researchers had previously held, thus signifcantly altering those perceptions.6

Refection exercise 12.1 Think of a disability-focused research project that you have conducted, participated in or read about. Refect on this project in relation to the three principles of reciprocity, gain and empowerment. How might the project have been conducted diferently to more closely refect these principles?

Summary of key points •

•

•

There is a need for more research on disability in numerous areas to support policymakers and development actors to address the needs of disabled people, promote their rights to full participation in society and fully implement the CRPD. There is a particular need for research that gives voice to disabled people themselves, capturing their views, priorities and real-life experiences. Historically, much of the research that has been conducted on disability has been criticised for framing disability as an individual or medical issue and for failing to give sufcient weight to the views of disabled research participants. In response to these criticisms, disability researchers have increasingly adopted more inclusive or participatory research methodologies, which

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Researching disability aim to create greater equality within the research process and to validate the subjective experiences of research participants. The emancipatory research paradigm, closely associated with the UK disability movement, goes beyond participatory research in that it aims to turn over control of the entire research process to disabled people and the organisations that represent them. There is much debate, however, as to how emancipatory research can be put into practice, especially in Southern contexts where the emancipatory goals of the worldwide disability movement may confict with local priorities. While there are some signifcant diferences between the participatory and emancipatory paradigms, there is no doubt that several key principles are common to both. In particular, the need to listen carefully to the views of disabled participants, to learn from their experiences and to allow them, where possible, to exert a guiding infuence on the research agenda, so that research fndings refect their true priorities and realities.

Discussion questions 1) To what extent is it possible, or desirable, to remain objective when conducting research with disabled people? 2) How does the way in which interview or survey questions are framed infuence a research project? 3) How can disabled research participants be encouraged and supported to participate in the early stages of a research project, when the objectives are shaped, and in the later stages, when data is analysed and fndings are disseminated? 4) To what extent does the emancipatory research paradigm provide a useful basis for conducting research on disability in the Global South?

Suggested further reading Bezzina, L. (2022) ‘Participatory video and diagramming with disabled people in Burkino Faso: refections on methods, representation and power’. In Disability and Society, DOI: 10.1080/09687599.2022.2034599 Petersen, A. (2011) ‘Research with individuals labelled “other”: refections on the research process’. In Disability and Society 26(3), 293–305. Singal, N. (2010) ‘Doing disability research in a Southern context: challenges and possibilities’. In Disability and Society 25(4), 415–426.

Notes 1 See Table 4.3, Chapter 4. 2 See Chapter 2 for an explanation of the key role played by UPIAS in laying the foundations for the Social Model of Disability. 3 ‘Vazhndhu Kaattuvom’ is a Tamil expression meaning ‘let’s show how to live’. 4 See Suggested further reading.

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5 See Suggested further reading. 6 See Suggested further reading.

References Abberley, P. (1992) ‘Counting us out: A discussion of the OPCS disability surveys’. In Disability and Society 7(2): 139–155. AfriNEAD (African Network for Evidence-to-Action on Disability) (n.d.) About Us. Retrieved on 10 April 2022 from ABOUT US | Afrinead (sun.ac.za) Albrecht, G., Seelman, K. and Bury, M. (Eds.) (2001) Handbook of Disability Studies. London: SAGE. Aspis, S. (2022) ‘Why are disabled people with learning difculties being prevented from leading campaigns, projects and initiatives’. In Disability and Society 37(1): 154–159. Barnes, C. (2001) ‘Emancipatory’ Disability Research: Project or Process? Public Lecture at City Chambers, Glasgow, on 24 October. Retrieved on 10 March 2022 from https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/ Barnes-glasgow-lecture.pdf Barnes, C. and Mercer, G. (1997) ‘Breaking the mould? An introduction to doing disability research’. In Barnes, C. and Mercer, G. (Eds.) Doing Disability Research. Leeds: The Disability Press, 1–14. Bezzina, L. (2022) ‘Participatory video and diagramming with disabled people in Burkino Faso: Refections on methods, representation and power’. In Disability and Society. DOI: 10.1080/09687599.2022.2034599 Campbell, J. and Oliver, M. (1996) Disability Politics in Britain: Understanding Our Past, Changing Our Future. London: Routledge. Chambers, R. (1997) Whose Reality Counts. Rugby: ITDG Publishing. Cobley, D.S. (2013) ‘Towards economic participation: Examining the impact of the Convention on the Rights of Persons with Disabilities in India’. In Disability and Society 28(4): 441–455. Cobley, D.S. (2015) ‘Typhoon Haiyan one year on: Disability, poverty and participation in The Philippines’. In Disability and the Global South 2(3): 686–707. Cornwall, A. and Jewkes, R. (1995) ‘What is participatory research?’ In Social Science and Medicine 41(12): 1667–1676. Freire, P. (1972) Pedagogy of the Oppressed. Harmondsworth: Penguin. French, S. and Swain, J. (1997) ‘Changing disability research: Participating and emancipatory research with disabled people’. In Physiotherapy 83(1): 26–32. Grischow, J., Naami, A., Mprah, W. and Mfoafo-M’Carthy, M. (2021) ‘Methodologically thinking: Doing disability research in Ghanaian cultural communities’. In Scandinavian Journal of Disability Research 23(1): 169–179. Hunt, P. (1981) ‘Settling accounts with the parasite people’. In Disability Challenge 2: 37–50. IDDC (International Disability and Development Consortium) (2004) Inclusive Development and the UN Convention. IDDC Refection Paper. Retrieved on 30 October 2021 from www.un.org/esa/socdev/enable/rights/ahc3iddc.pdf Kemmis, S. and McTaggert, R. (2003) ‘Participatory Action Research’. In Denzin, N.K. and Lincoln, Y.S. (Eds.) Strategies of Qualitative Enquiry (2nd Edition). Thousand Oaks: SAGE, 559–604. Kindon, S., Pain, R. and Kesby, M. (2009) ‘Participatory Action Research’. In Kitchin, R. and Thrift, N. (Eds.) International Encyclopedia of Human Geography. Oxford: Elsevier, 90–95.

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Kitchin, R. (2001) ‘Using participatory action research approaches in geographical studies of disability: Some refections’. In Disability Studies Quarterly 21(4): 61–69. Kitchin, R. (2002) Towards Emancipatory Disability Research: Refections on Three Participatory Action Research Projects. Maynooth: National Institute of Regional and Spatial Analysis, National University of Ireland. Retrieved on 13 March  2022 from http://sonify.psych.gatech.edu/~walkerb/classes/assisttech/pdf/ kitchin(2002).pdf Laws, S. with Harper, C. and Marcus, R. (2003) Research for Development: A Practical Guide. London: SAGE. Martin, J. and White, A. (1988) OPCS Surveys of Disability in Great Britain Report 2: The Financial Circumstances of Disabled Adults Living in Private Households. London: HMSO. Meekosha, H. (2011) ‘Decolonising disability: Thinking and acting globally’. In Disability and Society 26(6): 667–682. Miller, E.J. and Gwynne, G.V. (1972) A Life Apart. London: Tavistock. Moore, M., Beazley, S. and Maezler, J. (1998) Researching Disability Issues. Maidenhead: Open University Press. Oliver, M. (1990) The Politics of Disablement. Basingstoke: Macmillan. Oliver, M. (1992) ‘Changing the social relations of research production’. Disability, Handicap and Society 7(2), 101–114. Oliver, M. (1997) ‘Emancipatory research: Realistic goal of impossible dream?’ In Barnes, C. and Mercer, G. (Eds.) Doing Disability Research. Leeds: The Disability Press, 15–31. Petersen, A. (2011) ‘Research with individuals labelled ‘other’: Refections on the research process’. In Disability and Society 26(3): 293–305. Shakespeare, T. (1996) ‘Rules of engagement: Doing disability research’. In Disability and Society 11(1): 115–119. Singal, N. (2010) ‘Doing disability research in a Southern context: Challenges and possibilities’. In Disability and Society 25(4): 415–426. Stone, E. and Priestley, M. (1996) ‘Parasites, pawns and partners: Disability research and the role of non-disabled researchers’. In British Journal of Sociology 47(4): 699–716. Swain, J. and French, S. (2004) ‘Researching together: A participatory approach’. In French, S. and Sim, J. (Eds.) Physiotherapy: A Psychosocial Approach (3rd Edition). Oxford: Butterworth-Heinemann. Swartz, L. (2009) ‘Building disability research capacity in low-income contexts: Possibilities and challenges’. In MacLachlan, M. and Swartz, L. (Eds.) Disability and International Development: Towards Inclusive Global Health. Dordrecht: Springer, 91–104. Turmusani, M. (2004) ‘An eclectic approach to disability research: A majority world perspective’. In Asia Pacifc Disability Rehabilitation Journal 15(1): 3–11. UN (United Nations) (2006) Convention on the Rights of Persons with Disabilities and Optional Protocol. Washington: United Nations. WHO (World Health Organization) and World Bank (2011) World Report on Disability. Geneva: WHO. Retrieved on 22 July 2022 from http://whqlibdoc.who.int/ publications/2011/9789240685215_eng.pdf Zarb, G. (1992) ‘On the road to Damascus: First step towards changing the relations of disability research production’. In Disability, Handicap & Society 7(2): 125–138.

Index

9/11 attacks 216 abuse see violence accessibility 68, 70, 79, 91, 99–100, 196, 257, 264; audits 107–108, 116; of early warning and communication systems 216; and legislation 107–108; of reconstruction 221–222; of schools 160, 167–168; of temporary shelters and camps 217–218; of workplaces 185; see also attitudinal barriers; Convention on the Rights of Persons with Disabilities (CRPD); health and rehabilitation services; information and communication technologies (ICT); societal barriers; universal design action research see participatory action research (PAR) Addis Ababa Financing Agenda 67–68 afrmative measures 185, 186, 198–199 Afghanistan 43, 213, 243 African Decade of Disabled Persons 71 African Network for Evidence-toAction on Disability (AfriNEAD) 268 Agenda for Sustainable Development 1, 41, 43, 68–71, 116, 124, 138, 159, 215, 246, 256; and decent work (SDG 8) 186–187; and education (SDG 4) 165–167 Albania 155 apprenticeships 197 appropriate technology see assistive technology Asia and Pacifc Decade of Disabled Persons 71

Asian tsunami see Indian Ocean tsunami assistive devices see assistive technology assistive technology 3, 58, 63, 114, 119, 125, 127, 132, 133, 134, 144–145, 225, 238, 247; see also information and communication technologies (ICT) attitudes see attitudinal barriers attitudinal barriers 66, 83, 102–103, 179, 220–221; to education 172–173; to employment 188; to health and rehabilitation 137, 140, 147; to microfnance 202; to vocational skills development 192 Australia 37, 107, 160 awareness raising 57, 63, 67, 71, 80, 86, 92, 108, 125, 130, 135–136, 137, 140, 144, 171, 172–173, 185, 199, 205, 216, 222, 224, 226, 246, 250, 251; see also Convention on the Rights of Persons with Disabilities (CRPD) Bangladesh 42–43, 48, 217, 222, 240 barrier-free design 109 Bhutan 171 biopsychosocial model see ICF Botswana 159 Brazil 131, 134 built environment 101–102, 103, 107–108; see also New Urban Agenda; universal design Bulgaria 242 Burkina Faso 84–85, 87, 262–263 business development support (BDS) 204–205; see also self-directed employment

276

Index

Cambodia 86, 92–93, 216, 224 Cameroon 126, 128, 191 Canada 81, 200, 242 capability perspective 46–47 capacity building see disabled people’s organisations (DPOs) cash for work programmes 220 cash transfers 47, 133 caste: disability and 37 CBR see community-based rehabilitation (CBR) Central African Republic 168, 217 Centre for Independent Living (CIL) see independent living movement charity model see welfare model Charter on Inclusion of Persons with Disabilities in Humanitarian Action 229 child-to-child approach 170–171 Chile 131, 167, 173 China 59, 88, 95, 133, 134, 135, 173, 174, 199 climate change 211 Columbia 146, 172 Committee on the Rights of Persons with Disabilities 64, 99–100, 106–107 commonality of experience 33 community-based rehabilitation (CBR) 125–126, 134, 140–146, 224; issues and challenges 146–148 conditional cash transfers see cash transfers confict 211–212, 213–214, 217; between DPOs 87; reconciliation and 226; see also Ottawa Treaty Convention on the Rights of Persons with Disabilities (CRPD) 1, 2–3, 19, 21, 23, 35, 54, 61–64, 78, 91, 109, 114, 256, 175, 252, 256; and accessibility 99, 104–107, 108, 117; and awareness raising (Article 8) 63, 103, 186; and disabled peoples organisations (DPOs) 82, 83–84, 85, 252; and disasters (Article 11) 227, 246; and economic participation (Articles 27, 28 and 8) 185–186; and education (Article 24) 158, 165, 170; and health and rehabilitation (Articles 25 and 26) 125, 139; implementation barriers 64–67; and Optional Protocol 64; and poverty 41, 136; and social protection

(Article 28) 47; see also disability; disabled people’s organisations (DPOs); reasonable accommodation conversion handicap 46–47 Copenhagen Declaration on Social Development 58 corporate social responsibility 198 Cote d’Ivoire 38 COVID-19 2, 22, 41, 116, 236–237; and access to health and rehabilitation services 136, 239, 243, 246–247; and access to information 238–239, 246; and community support 237–238, 248–249; disability-inclusive responses to 245–246; and DPOs 242, 249–253; and economic stresses 239–240; and education 155, 240–241, 247–248; and employment 64, 240, 248; and impairment 244–245; and institutional living 241–242, 249; and intersectional discrimination 242–243; and social protection 240, 247; and violence 128, 243–244 CRPD see Convention on the Rights of Persons with Disabilities (CRPD) culture see identity Dakar Framework for Action 164–165 data collection 23–25, 64–65, 69, 215, 222; see also emancipatory research; measuring disability; participatory research design for all see universal design Digital Accessibility Rights Index (DARE Index) 117 digital divide 115–117, 119, 241 disability: CRPD description of 1, 21, 63; ICF defnition of 21; medical model defnition of 12; prevalence of 1, 26, 213, 221; social model defnition of 14; as social oppression 13; social relation defnition of 17 disability identity see identity disability mainstreaming 90–95, 226; see also inclusive education; integrated education disability movement 1, 3, 33, 34, 45, 54, 60, 80–82, 85–86, 89; in the United Kingdom 13, 32, 183, 186, 258, 266, 269; see also disabled

Index people’s organisations (DPOs); independent living movement; selfhelp groups disability research 41, 256–257; historical impact of 257–260; see also action research; emancipatory research; participatory research disabled-friendly design see barrier-free design Disabled People’s International (DPI) 60, 80–82, 85, 117 disabled people’s organisations (DPOs) 1, 65, 66, 67, 82–83, 107, 117; capacity building of 85, 94, 224–225; in CBR programmes 142, 144–145; challenges facing 83–88; in disaster management processes 222–225; and economic participation 190, 204; and education 159, 173; in peacekeeping and reconciliation processes 226; and research 256, 267, 268; see also Convention on the Rights of Persons with Disabilities (CRPD); COVID19; disability movement; self-help groups disaster 211–212; impact of 212–214; mitigation 221–223; preparation 215–216; recovery 220–221; response 216–220; see also cash for work programmes; confict; disaster management cycle; disaster risk management; displacement disaster management cycle 214–215 disaster risk management 222–223 discrimination 1–2, 38, 136; in employment 188; institutional 102; in temporary shelters and camps 218; see also accessibility; attitudinal barriers; COVID-19; gender; intersectionality; societal barriers displacement 217–219, 228 Draft Protocol on the Rights of Persons with Disabilities in Africa 65 economic participation 183; environmental factors infuencing 187–191; international agreements on 184–187; see also employment; self-employment; vocational skills development education 45, 47, 69–70, 87, 114, 133, 190, 192; exclusion from 87, 116, 155, 219; international agreements

277

on disability and 163–167; poverty and 156–157; see also child-to-child approach; COVID-19; inclusive education; integrated education; intersectionality; special education; Whole Education Approach Education for All (EFA) 155, 162, 163, 164–165; Flagship 165 emancipatory research 265–267; in practice 267–271 employment 47, 55, 69, 102, 114, 127, 132, 147, 157, 184–185, 193–194; formal and informal sector 188–190; waged 197–201; see also afrmative measures; Agenda for Sustainable Development; Convention on the Rights of Persons with Disabilities (CRPD); COVID-19; economic participation; intersectionality; jobs fairs; selfdirected employment; sheltered workshops environment see built environment Ethiopia 36, 93, 128, 191, 197, 239 evil spirits see witchcraft forced migration see displacement formal sector see employment France 82 gender: disability and 35–36, 128, 138–140, 213, 243; see also violence Ghana 65, 160, 265 Global Partnership on Disability and Development 63–64 Guatemala 34, 42, 133, 134, 157 Guinea Bissau 168 Guyana 127 Haiti earthquake 211, 217–218, 221 health 22, 38, 126–127; insurance 134; promotion 135–136, 138; risk factors 127–128; see also Convention on the Rights of Persons with Disabilities; COVID-19; health and rehabilitation services; sexual and reproductive health health and rehabilitation services: 124; accessibility of 131–133, 213; afordability of 133–134; availability of 134–135, 219; quality of 136–138; see also community-based rehabilitation (CBR); Convention

278

Index

on the Rights of Persons with Disabilities (CRPD); COVID-19; sexual and reproductive health HIV/AIDS 60, 135–136, 139, 250–252 human rights framework see human rights model human rights model 18–20; see also rights-based approach Hurricane Katrina 211 ICIDH 12 ICF 20–23; measuring disability using the 24–26; and rehabilitation 129–131; see also universal design ICT see information and communication technologies (ICT) identity 32, 88; cultural context and 37–40; disability models and 33; see also impairment; intersectionality; personhood ILO Code of Practice for Managing Disability in the Workplace (2001) 185 ILO Convention No. 159 (1983) 185 ILO Employment (Transition from War to Peace) Recommendation No.71 (1944) 184 ILO Recommendation No. 59 (1955) 184–185 impairment 14–16, 18, 34–35, 87, 158, 159, 213–214; hearing 34, 114, 159, 165, 167, 170, 216, 264; ICF and 20–22; and identity 34–35; intellectual 34, 40, 101, 128, 135, 139, 168, 170, 173, 216, 240, 264; medical model and 12; mobility 34, 114, 167, 168, 264; visual 34, 103, 114, 116, 165, 167, 168, 216, 218; see also COVID-19 Incheon Strategy 71 inclusive education 156, 161–162, 228; in practice 167–173; see also Agenda for Sustainable Development; childto-child approach; Convention on the Rights of Persons with Disabilities (CRPD); COVID-19; education; Salamanca Statement independent living movement 79–80, 87 India 11, 36–37, 40, 42, 48, 89–90, 133, 134, 135, 147–148, 169, 171, 193–194, 199, 200–201, 203, 238, 240, 244–245, 250, 261, 271 Indian Ocean tsunami 18, 45, 213

individual model 10, 78, 113; and education 157, 161; and identity 33; and research 259–260; see also medical model; religious model; welfare model Indonesia 224 informal sector see employment information and communication technologies (ICT) 101, 115–119 Information Society 115, 119 infrastructure see built environment institutional barriers see societal barriers integrated education 156, 160–161; see also education Inter-American Convention for the Elimination of All Forms of Discrimination against Persons with Disabilities 72 International Bill of Human Rights see Universal Declaration of Human Rights International Campaign to Ban Landmines 59 International Covenant on Civil and Political Rights see Universal Declaration of Human Rights International Covenant on Economic, Social and Cultural Rights see Universal Declaration of Human Rights International Disability Alliance 81–82, 85, 237 International Disability Caucus 61 international disability movement see disability movement International Year of Disabled People 56, 81 intersectionality 19, 35–37, 213; see also COVID-19 Ireland 262 Jamaica 241 Japan earthquake 212 jobs fairs 200–201 Jomtien Conference 163 karma 11, 34; see also religious model Kenya 39, 44, 72, 83, 132, 144–146, 169, 189, 195–196, 218, 239, 240, 244 labelling 12, 31–32, 157 language see terminology

Index Lebanon 135 Lesotho 167, 239 LGBTI see sexual orientation mainstreaming see disability mainstreaming Malawi 36, 38, 133, 134, 136–137, 167, 183, 239, 241 Malaysia 108 Mali 72 marriage 36, 139–140 measuring disability 23–26 medical model 3, 12–13, 126, 128, 258; see also impairment; labelling; rehabilitation mental health 22, 34, 56, 101, 128, 131–132, 135, 215, 238, 246, 249 mental illness see mental health Mexico 61, 139, 245 microfnance 202–203; see also selfdirected employment Millennium Declaration 1, 59–60, 164 Millennium Development Goals (MDGs) see Millennium Declaration Mine Ban Treaty see Ottawa Treaty Moldova 241, 250 Mongolia 190 Mozambique 135–136, 167, 196–197 Myanmar 40, 135 Namibia 133 Nepal 167, 219, 240, 244; earthquake 213 New Urban Agenda 112–113 Nicaragua 85–86, 203 Nigeria 87, 147, 243 Optional Protocol see Convention on the Rights of Persons with Disabilities (CRPD) Ottawa Treaty 58–59 Pakistan earthquake 224 Palestine 213–214, 250 participatory action research (PAR) 261–263 participatory research 260–261; in practice 263–265; see also participatory action research (PAR); participatory rural appraisal (PRA) participatory rural appraisal (PRA) 261 peer support 203, 238, 250–252; see also child-to-child approach

279

personhood 39 Peru 132 Philippines 13, 66, 80, 140, 203–204; see also Typhoon Haiyan physical barriers see societal barriers poverty: and disasters 212, 213, 216; and economic participation 183; empirical evidence on disability and 41–43; and health 127, 133; relationship between disability and 44–46; see also capability perspective; Convention on the Rights of Persons with Disabilities (CRPD); COVID-19; education; social protection Programme of Action for the Decade of the Americas for the Rights and Dignities of Persons with Disabilities 71–72 Protocol to the African Charter on Human and People’s Rights on the Rights of Persons with Disabilities in Africa 72 race: disability, gender and 37 reasonable accommodation 106, 107, 111, 170, 198, 248 rehabilitation 128–129, 145, 205; see also community-based rehabilitation (CBR); health and rehabilitation services; ICF religious model 11, 138; see also karma research see disability research rights-based approach 85, 88–90, 129, 226; see also Convention on the Rights of Persons with Disabilities (CRPD); disability mainstreaming; human rights model Russia 59, 199 Rwanda 72, 127, 239, 250 Salamanca Statement 164 Sapporo Declaration 60 self-directed employment 145, 201–203; and group enterprises 203–204; see also business development support self-employment see self-directed employment self-help groups 82, 203; see also disabled people’s organisations (DPOs) Sendai Framework 1, 228

280

Index

Senegal 128, 191 sexual and reproductive health 37, 125, 138–140 sexual orientation 19, 36, 37, 243 sheltered workshops 185, 193–196 Sierra Leone 217, 218, 220–221 social diference see identity social identity see identity social model 13–15, 51, 57, 61, 82, 100, 113; debates 15–18; and disaster recovery 224; and economic participation 194–195; and human rights 18–20; and research 259–261, 266, 268; see also identity; societal barriers social protection 47–48, 221–222; see also COVID-19 societal barriers 100–104, 220; institutional 102, 220; physical 101–102, 220; see also attitudinal barriers; economic participation; education; health and rehabilitation services Solomon Islands 215 South Africa 37, 47, 89, 127, 132, 133, 134, 137, 140, 155, 160, 167, 183, 202; see also African Network for Evidence-to-Action on Disability (AfriNEAD) South Korea 87, 173 South Sudan 168 special education 144, 156, 157–160, 163; see also education; special educational needs (SEN) special educational needs (SEN) 157–158 special schools see special education Sphere Standards 227–228 Sri Lanka 18, 36, 45, 226 Stockholm Declaration 110 Sudan 133 Sustainable Development Agenda see Agenda for Sustainable Development sustainable development goals (SDGs) see Agenda for Sustainable Development Tajikistan 67 Tanzania 93, 135–136, 167 terminology 2–4, 38–39 Thailand 163, 167, 168 Turkey 87

twin-track approach 94–95, 204, 223, 246 Typhoon Haiyan 218, 220, 224–225, 264–265 Uganda 82, 87, 93, 128, 161, 168, 170, 173–174, 190, 191, 197, 198, 203, 217, 250–252 Union of the Physically Impaired Against Segregation (UPIAS) 13–14, 15–16, 82, 258 United Kingdom 13, 64, 82, 113, 157–158, 259, 267; see also disability movement United Nations Convention on the Rights of the Child (CRC) 163 United Nations Decade of Disabled Persons 56, 57, 71 United Nations Declaration on the Rights of Disabled Persons 56 United Nations Declaration on the Rights of Mentally Retarded Persons 56 United Nations Partnership on the Rights of Persons with Disabilities 67 United Nations Standard Rules 57–58 United States 37, 59, 79, 114, 116, 137, 140, 269–271; see also 9/11 attacks; Hurricane Katrina Universal Declaration of Human Rights 55–56, 155 universal design 109–112, 257; and the ICF 113–114; see also information and communication technologies (ICT) Universal Primary Education 155, 164 Vietnam 135, 183, 222–223 violence 127–128, 139; in schools 173–176; in temporary shelters and camps 218 vocational skills development 184–185, 191–193; mainstream approaches to 196–197; segregated approaches to 193–196; see also apprenticeships; sheltered workshops vocational skills training see vocational skills development Wall of Barriers see societal barriers Washington Group 24–26; see also Washington Group Short Set of Questions (WG-SS)

Index Washington Group Short Set of Questions (WG-SS) 24–25, 70 Web Content Accessibility Guidelines (WCAG) 118 welfare model 11–12, 66, 82, 129, 193 Whole Education Approach 175–176 witchcraft 38, 72, 137 World Health Survey 26, 126

281

World Programme of Action 56–57 World Report on Disability 1, 22, 41, 106, 256–257 Zambia 21, 26, 43, 93, 128, 171, 172, 191 Zimbabwe 38–39, 66, 81, 135, 146, 147, 239