Disability, Globalization and Human Rights 1138487058, 9781138487055

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Disability, Globalization and Human Rights

The UN Convention on the Rights of Persons with Disabilities has facilitated the understanding that disability is both a human rights and development issue. In order to achieve the Sustainable Development Goals by 2030, the focus on disability inclusion has become increasingly important in the discourse of international and national efforts for “leaving no one behind”, the motto of the SDGs. This book discusses pertinent and emerging themes such as disability rights, globalization, inequalities, international cooperation and representation. Evidence which has been obtained tends to show that persons with disabilities have been disproportionately left behind without proper representation, participation and inclusion. This book critically investigates the gaps at different levels, from top to bottom, and as importantly, within the global disability movement, for the realization of global disability rights, and theorizes the intersection of disability, globalization and human rights. Empirical case studies from different countries and contexts are introduced to deepen analysis on theories of critical disability studies from a global perspective. Co-edited by a disability researcher and the former United Nations Special Rapporteur on Disability, this book will be of interest to all students, academics, policy makers and practitioners working to advance the cause of disability rights around the world. Hisayo Katsui is Associate Professor in Disability Studies at the University of Helsinki, Finland. She has been a board member of the Nordic Network of Disability Research; an editor of the Scandinavian Journal of Disability Research; chairperson of the Finnish Society for Disability Research; and a permanent expert to the Finnish Advisory Board for the Rights of Persons with Disabilities. Previously, she worked for the former United Nations Special Rapporteur on Disability, Shuaib Chalklen. She also worked at the Abilis Foundation, a Finnish grant-making organization of persons with disabilities, formerly led by the late Kalle Könkkölä. Her research interests are disability rights realization in practice as well as participatory research approaches. She has conducted research on disabilities in Central Asia, Ethiopia, Finland, Nepal and Uganda, the findings of which are included as independent case study chapters in this book. Shuaib Chalklen currently works for the African Disability Forum as the regional coordinator for their Inclusion Works Program. He previously worked as the United Nations Special Rapporteur on Disability for the period 2009–2014. Prior to this he worked in the Office of the President in South Africa, in the Policy and Advisory Services Unit as the Chief Director for Governance and Administration. He was also responsible for developing South Africa’s first policy on disability. During his term as UN Special Rapporteur he established the African Disability Forum and served as its first Chairperson.

Interdisciplinary Disability Studies Series editor: Mark Sherry, The University of Toledo, USA

Disability studies has made great strides in exploring power and the body. This series extends the interdisciplinary dialogue between disability studies and other fields by asking how disability studies can influence a particular field. It will show how a deep engagement with disability studies changes our understanding of the following fields: sociology, literary studies, gender studies, bioethics, social work, law, education, or history. This ground-breaking series identifies both the practical and theoretical implications of such an interdisciplinary dialogue and challenges people in disability studies as well as other disciplinary fields to critically reflect on their professional praxis in terms of theory, practice, and methods. Global Perspectives on Disability Activism and Advocacy Our Way Edited by Karen Soldatic and Kelley Johnson Disability Hate Speech Social, Cultural and Political Contexts Edited by Mark Sherry, Terje Olsen, Janikke Solstad Vedeler and John Eriksen Sexual Citizenship and Disability Understanding Sexual Support in Policy, Practice and Theory Julia Bahner Critical Disability Studies and the Disabled Child Unsettling Distinctions Harriet Cooper Disability, Globalization and Human Rights Edited by Hisayo Katsui and Shuaib Chalklen For a full list of titles in this series, please visit www.routledge.com/series/ASHSER1401

Disability, Globalization and Human Rights

Edited by Hisayo Katsui and Shuaib Chalklen

First published 2020 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN and by Routledge 52 Vanderbilt Avenue, New York, NY 10017 Routledge is an imprint of the Taylor & Francis Group, an informa business © 2020 selection and editorial matter, Hisayo Katsui and Shuaib Chalklen; individual chapters, the contributors The right of Hisayo Katsui and Shuaib Chalklen to be identified as the authors of the editorial material, and of the authors for their individual chapters, has been asserted in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988. All rights reserved. No part of this book may be reprinted or reproduced or utilized 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 identification and explanation without intent to infringe. British Library Cataloguing-in-Publication Data A catalogue record for this book is available from the British Library Library of Congress Cataloging-in-Publication Data Names: Katsui, Hisayo, editor. | Chalklen, Shuaib, editor. Title: Disability, globalization and human rights / edited by Hisayo Katsui and Shuaib Chalklen. Description: Abingdon, Oxon ; New York, NY : Routledge, 2020. | Series: Interdisciplinary disability studies | Includes bibliographical references and index. Identifiers: LCCN 2020006034 (print) | LCCN 2020006035 (ebook) | ISBN 9781138487055 (hbk) | ISBN 9781351043953 (ebk) Subjects: LCSH: People with disabilities--Civil rights. | Human rights. | Sustainable development. Classification: LCC HV1568 .D5678 2020 (print) | LCC HV1568 (ebook) | DDC 323.3/7--dc23 LC record available at https://lccn.loc.gov/2020006034 LC ebook record available at https://lccn.loc.gov/2020006035 ISBN: 978-1-138-48705-5 (hbk) ISBN: 978-1-351-04395-3 (ebk) Typeset in Times New Roman by Taylor & Francis Books

The book is dedicated to one of the greatest global disability activists of our time, Kalle Könkkölä (1950–2018).

Contents

List of contributors Prologue by Hisayo Katsui 1 Introduction

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HISAYO KATSUI

2 Key concepts and theories

6

HISAYO KATSUI

3 Methodology

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HISAYO KATSUI

4 Disability and vulnerability: A human rights reading of the responsive state

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MIKAELA HEIKKILÄ, HISAYO KATSUI AND MAIJA MUSTANIEMI-LAAKSO

5 The global disability rights realization in Ethiopia: Inclusive education of children with disabilities

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6 The global disability rights realization in Finland: Deinstitutionalization of persons with intellectual disabilities

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7 The global disability rights realization in Uganda: Political participation and representation of persons with disabilities

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8 Changing the paradigm of disability from stigma to equity in university social work education in Kyrgyzstan HISAYO KATSUI, GULMIRA KAZAKUNOVA AND MINA C. MOJTAHEDI

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9 The global disability rights realization in Nepal and Tanzania: The right to water and sanitation

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NATHALY GUZMÁN FIGUEROA AND HISAYO KATSUI

10 Global disability rights instruments and the challenges of implementation: Observations of the former UN Special Rapporteur on Disability

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SHUAIB CHALKLEN

11 Methodological discussion: Participatory research approach in Disability Studies

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HISAYO KATSUI

12 Discussing and theorizing global disability rights

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HISAYO KATSUI

13 Concluding remarks

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HISAYO KATSUI

Epilogue by Hisayo Katsui Index

175 176

Contributors

Hisayo Katsui is Associate Professor in Disability Studies, University of Helsinki, Finland. Shuaib Chalklen is Regional Coordinator, African Disability Forum, South Africa. Nathaly Guzmán Figueroa is Programme Analyst on Innovation, UNFPA, Mozambique. Mikaela Heikkilä is a post-doctoral researcher, Åbo Akademi University, Finland. Gulmira Kazakunova is Executive Director, Ravenstvo, Kyrgyzstan. Mina C. Mojtahedi is Development Coordinator, Threshold Association, Finland. Maija Mustaniemi-Laakso is a doctoral researcher, Åbo Akademi University, Finland.

Prologue Hisayo Katsui

Disability inclusion is a fundamental human right. When we fight to secure those rights, we move our world closer to upholding of the core values and principles of the United Nations Charter. Disability inclusion is central to the promise of the 2030 Agenda on Sustainable Development. When we remove policies or biases or obstacles to opportunity for persons with disabilities, the whole world benefits. Indeed, the International Labour Organisation found that excluding people with disabilities from the world of work can rob countries of as much as 7 per cent of their Gross Domestic Product. Realising the rights of persons with disabilities is a matter of justice as well as a common-sense investment in our common future. (UN Secretary General, 2019)

The statement, that was recently made by the UN Secretary General at the Conference of State Parties to the Convention on the Rights of Persons with Disabilities (CRPD) in June 2019, is quite informative in grasping the situation of disabilities today. Disability inclusion has certainly been recognized as a fundamental human right and justice as enshrined in the Convention and the Sustainable Development Goals (SDGs). Yet securing them requires “fighting” and deliberate efforts of rather strong will and action that are far beyond business as usual. The Secretary General does not go deep into discussions on how the “fighting” can be implemented locally where the rights belong, when business as usual seems to be continuing. He refers to many problems such as policies, biases and obstacles that hinder equal opportunities for persons with disabilities, which has been the reality even after the Convention was enacted more than a decade ago, and implementations have supposedly been taking place. To facilitate the understanding of people to change their paradigm, he sheds light on these institutional, social and environmental barriers instead of biological conditions of persons with disabilities to move away from a positivistic, individualized model of disability. He guides us to change the gaze from individuals to society without elaborating much on either of them. He stresses the economic implications of disability inclusion and highlights that it is a worthwhile investment with high returns to be made not only for those

Prologue xi with disabilities, but for the whole world. Growth thinking is implicit but unquestionably underlined. We think many of the notions and knowledge around disabilities need more investigation, especially when we look at the implementation of global disability rights in a local context including academia. After reading this book, you will understand why we had some reservations in the hidden connotations in this statement and global discourses on disabilities in general.

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Introduction Hisayo Katsui

In the influential World Report on Disability, the WHO and World Bank (2011: 7) stated that about 15% of the world’s population live with some form of disability based on 2010 global population estimates, which is higher than the WHO estimate of the 1970s (which had suggested 10%). Between 2% and 4% experience significant difficulties in functioning (WHO and World Bank, 2011: 29). The report points out that the number is growing due to the ageing population and the rapid spread of chronic diseases as well as improvements in the methodologies used to measure disabilities (ibid.: 8). Therefore, it is more likely that the proportion is even bigger today than 15%. That means at least one out of seven, or 1.2 billion people from around the globe have some kind of disability today. When family members of persons with disabilities are included in the number directly affected by disabilities, the number easily multiplies. Then UN Secretary General (2013) made a statement at the first ever High-level Meeting of the UN General Assembly on Disability and Development as follows, “Disability is part of the human condition; almost everyone will be temporarily or permanently impaired at some point in life.” This universalized image of disability is to some extent an appeal to gain much-needed support to disability inclusion, but at the same time it is highly problematic, as it tends to undermine actual negative experiences of persons with disabilities, including impairments (Shakespeare and Watson, 2002) and “real and material distinctions” (McRuer, 2006: 157). “Disabilities” as a word is a negative form of abilities and thus “normalcy” (McRuer, 2006: 85). The term “disabilities” therefore, could cause the labelling of some as “others” or differentiate persons with disabilities from norms in a certain context. Having acknowledged the possible negative effects of using this terminology, in this study we have chosen to use this word to politicize and problematize such a reality because “critical de-composition” of norms is important (ibid.: 158). The prevalence of disability is not widely recognized, let alone the lives of persons with disabilities. The Secretary General continues in the same statement, “Yet far too many people with disabilities live in poverty. Too many suffer from social exclusion. Too many are denied access to education, employment, health care, and social and legal support systems” (UN Secretary General, 2013).

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The global disability rights, exemplified in the UN CRPD, incorporate the largely neglected section of the world’s population into the mainstream political discourses and urge both states and all duty-bearers to act accordingly (Katsui and Kumpuvuori, 2008; Katsui, 2012). Nevertheless, his speech indicates that there is a huge gap between the law/policy and practice. That means, on the one hand, that international human rights have to be increasingly relevant at the local level in general, but on the other hand, it is rather difficult to “turn abstract statements into specific realities” (Oomen, 2015: 407). Due to the diverse backgrounds and contextual differences, no one formula has been established that can be applied to all countries, when even the definition of disabilities is not universal, and often different even within a country. The Washington Group on Disability Statistics, established under the UN Statistical Commission in 2001, is one of the bodies addressing the urgent need for common definitions, concepts, standards and methodologies in the production of statistics about persons with disabilities. Yet, accurate and internationally comparable data on disability have not yet been achieved (Washington Group on Disability Statistics, 2019). This is an important point of departure in a study pertaining to disabilities (Katsui, 2012: 13). The CRPD recognizes in its Preamble that “disability is an evolving concept and that disability results from the interaction between people with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others.” The World Report on Disability (WHO and World Bank, 2011: 4) also cites Leonardi et al. (2009) and stresses that “disability is the umbrella term for impairments, activity limitations and participation restrictions, referring to the negative aspects of the interaction between an individual (with a health condition) and that individual’s contextual factors (environmental and personal factors).” This relational approach to disabilities started to gain more support. Shakespeare (2006: 57) also suggests a relational approach between intrinsic and extrinsic factors. That is to say, the definition of disabilities today does not concentrate only on the medical and individual aspect of impairment (known as the medical model) but also on other relevant aspects including social, environmental as well as psychological aspects (known as the social model). At the same time, such a relational approach captures not only the negative aspect but also the “positive dimension of social relations which enable” persons with disabilities (Shakespeare, 2006: 57) to live their lives. “For a long time, it was assumed that challenges were natural and unavoidable consequences” of impairment (OHCHR, 2010: 5) but this holds true no longer due to the “profound shift” in disabilities as human rights issues enshrined in the Convention. When this global policy trend encounters with local realities, several power relationships become an important part of the analysis to explain the difficulties in translating global disability rights into local practices. Power relationships will be an important analytical viewpoint in this book for understanding disabilities.

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The CRPD represents a human rights-based approach to disabilities (Degener, 2017). There is no single definition of the approach, and therefore it is more appropriate to refer to human rights-based approaches to disabilities. The approaches typically work “ … to strengthen the capacity of duty-bearers to respect, protect, and fulfil their human rights obligations. Simultaneously, the rights-holders’ capacity to realize their human rights, as well as to demand and claim that their human rights be respected, protected, and fulfilled, is strengthened” (Katsui et al., 2014: 12). Human rights and their principles are both goals (Uvin, 2004: 123) and means (Frostell, 2006: 3). When a human rights-based approach is used as a means, it caters to the principles of empowerment, participation, non-discrimination and accountability with the priority on vulnerable people (Lundström-Sarelin and Mustaniemi-Laakso, 2007). That is, the process becomes participatory and transparent with equality in decision-making and a sharing of the outcomes of the process among the stakeholders involved (Sengupta, 2000, cited in Uvin, 2004). Identifying inequalities (inequality analysis) and stakeholders (stakeholder analysis), and their capacities (capacity gap analysis) are important for the approaches. Hence, the analysis with a human rights-based approach can provide insight into the distribution of power (OHCHR, 2006: 27). The study does not take human rights for granted but consciously utilizes them as an analytical tool. This book has set out the following key research questions.

1 2

3 4

How have global disability rights been localized and implemented in different contexts? What are the challenges and opportunities of a human rights-based approach to disability at the intersection of disability, globalization and human rights? What are the challenges and opportunities for participatory research on disabilities in different contexts? What are the possible strategies for Disability Studies in the near future that could materialize social change?

The book starts with an elaboration of some key concepts in Chapter 2. After the methodology chapter (Chapter 3), Chapter 4 paves the way for readers by elaborating the discussion of disability in human rights discourse with the focus on vulnerability as a particularity in the universality of human rights. Chapters 5, 6, 7, 8, 9 and 10 are case studies in which global disability rights are translated into local practices. Chapter 5 reports on an investigation of inclusive education of children with disabilities in Ethiopia; Chapter 6 reports on deinstitutionalization of people with intellectual disabilities in Finland; Chapter 7 considers political representation of persons with disabilities in Uganda; Chapter 8 looks at disability inclusion in university education in Kyrgyzstan; Chapter 9 considers water and sanitation rights of persons with disabilities in Nepal and Tanzania,

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and Chapter 10 on implementation of the global disability rights based on the experiences of the former UN Special Rapporteur on Disability. Chapter 11 is dedicated to a methodological discussion of these case studies in which we investigate participatory research approaches used in the case studies and link disability studies with a human rights-based approach. Chapter 12 reports on an attempt to discuss and theorize global disability rights by highlighting power relationships through the themes of self-determination and agency, representation and the globalization of the disability movement, global disability rights and neoliberalism, and analyse possible strategies for Disability Studies to move forward. Chapter 13 is a concluding chapter that summarizes answers to the four key questions that were set, based on the findings of the case studies. It also introduces possible areas of future research.

References Degener, Theresia. (2017) A New Human Rights Model of Disability. In Valentina Della Fina, Rechele Cera and Giuseppe Palmisano (eds) The United Nations Convention on the Rights of Persons with Disabilities, Cham, Switzerland: Springer, 41–59. Frostell, Kati. (2006) Human Rights of Women. Helsinki: KIOS. Katsui, Hisayo. (2012) Disabilities, Human Rights and International Cooperation: Human Rights-Based Approach and Lived Experiences of Uganda Women with Disabilities. Publication Series No. 8. Helsinki: The Center for Human Rights of Persons with Disabilities.. Katsui, Hisayo and Kumpuvuori, Jukka. (2008) Human Rights-Based Approach to Disability in Development in Uganda: A Way to Fill the Gap between Political and Social Spaces? Scandinavian Journal of Disability Research 10 (4) 227–236. Katsui, Hisayo, Ranta, Eija M., Yeshanew, Sisay A., Musila, Godfrey M., Mustaniemi-Laakso, Maija and Sarelin, Alessandra. (2014) Reducing Inequalities: A Human Rights-Based Approach in Finland’s Development Cooperation with Special Focus on Gender and Disability. Turku: Institute for Human Rights. Lundström Sarelin, Alessandra and Mustaniemi-Laakso, Maija. (2007) Human RightsBased Approach to Development: What Is It All About? Paper presented in a seminar, HRBA Kehitysyhteistyössä: Muutos tarvelähtöisyydestä oikeusperustaisuuteen, 27 September 2007, Helsinki. Leonardi, M., Ayuso Mateos, J.L., Bickenbach, J., Raggi, A., Francescutti, C., Franco, M.G., Kostanjsek, N. and Chatterji, S. (2009) MHADIE Background Document on Disability Prevalence Across Different Diseases and EU countries. Milan: Measuring Health and Disability in Europe. Available at: http://www.mhadie.it/publica tions.aspx (accessed 21 January 2010). McRuer, R. (2006) Crip Theory: Cultural Signs of Queerness and Disability. New York: New York University Press. OHCHR. (2006) Frequently Asked Questions on a Human Rights-Based Approach to Development Cooperation. New York and Geneva: United Nations. Available at: http:// ohchr.org/english/about/publications/docs/FAQ_en.pdf (accessed 27 September 2007). OHCHR. (2010) Monitoring the Convention on the Rights of Persons with Disabilities: Guidance for Human Rights Monitors. Professional Training Series No. 17. Available at:

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http://www.ohchr.org/Documents/Publications/Disabilities_training_17EN.pdf (accessed 13 March 2012). Oomen, Barbara. (2015) Rights and the City: Does the Localization of Human Rights Contribute to Equality? In Marjolein van den Brink et al. (eds) Equality and Human Rights: Nothing but Trouble? Liber Amicorum Titia Loenen. SIM Special no. 38, 401–409. Shakespeare, Tom. (2006) Disability Rights and Wrongs. London: Routledge. Shakespeare, T. and Watson, N. (2002) The Social Model of Disability: An Outdated Ideology? Research in Social Science and Disability 2, 9–28. UN Secretary General. (2013) Secretary-General’s statement at the High-Level Meeting of the General Assembly on Disability and Development. Available at: https:// www.un.org/sg/en/content/sg/statement/2013-09-23/secretary-generals-statem ent-high-level-meeting-general-assembly (accessed 16 December 2019). UN Secretary General. (2019) Remarks to the 12th session of the Conference of State Parties to the Convention on the Rights of Persons with Disabilities, 11th June 2019 at the United Nations Headquarters. Available at: https://www.un.org/development/ desa/disabilities/wp-content/uploads/sites/15/2019/06/secretary-general-of-the-uni ted-nations.pdf (accessed 16 December 2019). Uvin, Peter. (2004) Human Rights and Development. Bloomfield, CT: Kumarian Press. Washington Group on Disability Statistics. (2019) Washington Group on Disability Statistics. Available at http://www.washingtongroup-disability.com (accessed 17 December 2019). WHO and World Bank. (2011) World Report on Disability. Malta: WHO. Available at http s://www.who.int/disabilities/world_report/2011/report.pdf (accessed 16 March 2020).

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Key concepts and theories Hisayo Katsui

In this chapter, we have unpacked the global side of disabilities with elaboration on key concepts and theories to guide readers into the following case studies. At the same time, in this chapter we have made the epistemological background of the authors transparent, which hopefully will contribute to readers’ critical understanding of global disability rights.

The latest global history of disability rights Understanding the global history of disability rights enables us to comprehend changes in the conceptualization of disabilities over time and current approaches to disabilities much easier. The list below is not exclusive but it shows a relatively brief history of events pertaining to global disability rights, and thereby the different approaches to disabilities that have been represented and developed over the years.

1948 The Universal Declaration of Human Rights 1975 Declaration on the Rights of Disabled Persons 1981 International Year of Disabled People 1982 World Programme of Action Concerning Disabled People 1983–92 UN Decade of Disabled People 1993–2002 Asia and Pacific Decade of Disabled Persons (2003–Second decade; 2013–Third decade) 1993 UN Standard Rules on Equalization of Opportunities for Persons with Disabilities 2000 Millennium Development Goals (until 2015) 2000-09 African Decade of Disabled Persons (2010–Second decade) 2003-12 Arabic Decade of Disabled Persons 2006 UN Convention on the Rights of Persons with Disabilities 2013 UN High-level Meeting on Disability and Development 2015 Sustainable Development Goals (until 2030)

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The UN has adopted various international conventions and rules to promote the equal rights and opportunities of persons with disabilities during these years starting from The Universal Declaration of Human Rights in 1948. This Declaration states the principle ideology of the UN in its Article 1: All human beings are born free and equal in dignity and rights. Furthermore, Article 2 continues: Everyone is entitled to all the rights and freedoms set forth in this Declaration, without distinction of any kind, such as race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status. Furthermore, no distinction shall be made on the basis of the political, jurisdictional or international status of the country or territory to which a person belongs, whether it be independent, trust, non-self-governing or under any other limitation of sovereignty. (United Nations, 1948) In this Declaration, persons with disabilities are not explicitly mentioned in any Article, except for Article 25 that mentions disability: Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control. (Ibid.; emphasis added) Nevertheless, the words such as “all human beings” and “everyone” could be interpreted to include persons with disabilities as “other status.” That is, at this point, disability was not universally recognized as being a significant group yet. Similarly, the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social and Cultural Rights, adopted in 1966, did not have any articulated statement on persons with disabilities, except for the similarly expected connotation of their inclusion in “everyone.” This, however, turned out to be ineffective in including persons with disabilities. In the 1970s, the World Health Organization (WHO) made a distinction between impairment, disability and handicap (Despouy, 1993: 11):

Impairment: Any loss or abnormality of psychological, physiological, or anatomical structure of function. Disability: Any restriction or lack (resulting from an impairment) [sic] of ability to perform an activity in the manner or within the range considered normal for a human being.

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Hisayo Katsui Handicap: A disadvantage for a given individual, resulting from an impairment or disability, that limits or prevents the fulfilment of a role that is normal, depending on age, sex, social and cultural factors, for that individual.

In this way, handicap is considered to arise as a direct consequence of individual impairment in this model (Oliver, 1990). Therefore, this classification leads to medical and administrative solutions of the cure or rehabilitation of persons with disabilities from the viewpoint of scientific authenticity. This International Classification of Impairment, Disability and Handicap (ICIDH) had been the predominant definition of these terminologies until very recently at the policy level and prevalent even today in practice. ICIDH has represented the medical model of disability in disability studies due to its medically-oriented positivistic understanding of disability. Disability came into the mainstream with the Declaration on the Rights of Disabled Persons in 1975 and with the UN International Year of Disabled Persons in 1981. In the following year, the World Programme of Action Concerning Disabled People was published that refereed to ICIDH in the definition section. This Programme set “the guidelines for a world strategy to promote the adoption of effective measures for the prevention of disability, rehabilitation and the achievement of equality and full participation of disabled persons in social life and development” (UNDESA, n.d.). In 1993, the Standard Rules on Equalization of Opportunities for Persons with Disabilities was adopted and paved the way towards the UN Convention. The Rules are yet a non-binding list of recommendations to member states. It, however, is worth noting that “persons with disabilities” replaced “disabled people” at this point of history. The different meanings are highlighted in these terminologies, which will be explicated shortly in the following. Emergence of social model of disability Despite the mainstreaming of disability issues in international policies and human rights laws, persons with disabilities were not satisfied with this international trend due to its approach to disabilities, namely the medical model. Persons with disabilities started to organize themselves in 1960s and 1970s in various parts of the world. This coincides with the time when other social movements were created to pay attention to differences and marginalized minority groups, especially in the Global North. Social movement theories clarify the development of social model of disability. Toch (1965: 5) defines a social movement as “an effort by a large number of people to solve collectively a problem they feel they have in common.” Giddens (1993: 746) has defined a social movement as a large grouping of people who have become involved in seeking to accomplish, or to block, a process of social change. Several aspects of a social movement are worth noting, to

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unpack the disability movement. One of them is collective identity of a group, which is often central in forming a social movement in general, and a disability movement in particular (Ritzer, 2005; Beckett, 2006). That is, social psychology is relevant. At a personal level, individuals with disabilities frequently form their identity as others (McRuer, 2006: 158) when their experiences are deviant from socially constructed norm, namely people without a disability. For instance, when one’s is deprived of opportunity when others without a disability have the opportunity, the identity starts to take shape. In other words, awareness of “relative deprivation” (Pettigrew, 2002) explains an initial part of a social movement. When those individuals started to be aware of collective social experiences as a group beyond individual differences, collective identity of persons with disabilities can be formed, and then social transformation is aimed at. Equal citizenship is at the heart of understanding contemporary social movements (Beckett, 2006: 749). The political demand to be seen as a person has become central (Goodley et al., 2019: 213–214). Accordingly, disability activists of “all corners of the world” (ibid.: 218) started to argue that they need much more than the medical facts in order to understand disability as a collective experience in society which goes beyond the existence or experience of individual persons with disabilities. In this way, persons with disabilities started to assert their own needs by establishing organizations of persons with disabilities which enable the collective voice of persons with disabilities to be heard. The tension between persons with and without disabilities became decisive in the International Year of Disabled People in 1981. Several people without a disability had an agenda of their interests, such as residential care, which was clearly different from the expectation of persons with disabilities. Therefore, some persons with disabilities started to focus on their own and real problems apart from the mainstream events (Hasler, 1993), and established a global disability organization, Disabled People’s International in 1981. It was particularly a useful strategy for the movement to horizontally and globally network among disability movements across different countries, as persons with disabilities were minority in absolute number in any country and underprivileged to locally raise their voices heard. Persons with disabilities stress that their experiences must be expressed in their words and integrated in the consciousness of mainstream society (Morris, 1991). In this way, the disability movement was concerned to alter this medical conception and to empower persons with disabilities with the global slogan of “Nothing about us, without us.” In its process, social model of disability was formed which challenges the very assumption of “normality” and re-defines disability as social oppression (French, 1994). Therefore, social modelists preferred to use “disabled people” to politicize the collective negative experiences of social oppression of the group as “people” rather than individuals or “persons” and to highlight this phenomenon of being made “disabled” by the society. In this way, social model of disability was developed through the local disability movement and later on also through the global

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disability movement that aimed at social change towards equal society for persons with and without a disability. The comparison of ICIDH and the following definition clarifies the difference between these two models. The Physically Impaired against Segregation and Disabled People’s International defined (Finkelstein and French, 1993: 28):

Impairment: the lack of part or all of a limb, or having a defective limb, organ or mechanism of the body. Disability: the loss or limitation of opportunities that prevents people who have impairments from taking part in the normal life of the community on an equal level with others due to physical and social barriers.

The social model succeeded in changing the point of view to look at disabilities and has had a major impact on the global discourse on disability thereafter. More nuanced approaches to disabilities When we look closer into the disability movement today, social movement theories cannot provide a detailed account of the diversity in it. Especially from the 1990s onwards, more empirical research on the disability movement started to elaborate on the diversity within the movement. In general, the more a social movement matures, the more polarization takes place within that movement (Pleyers, 2010). There is a danger that articulate and empowered disability activists may become increasingly alienated from the many persons with disabilities who do not have easy access to the mainstream, paradoxically partly through their success with broader struggle (Lorenzo and Coleridge, 2019: 236). One of the first claims and criticisms was made internally by women with disabilities inspired by feminism (e.g. Thomas, 1993; Morris, 1991) against its gender-neutral approach to disability. Individual accounts were also highlighted in a relational approach to disability of critical realist disability studies scholars who see disability as an interaction between a person with a health condition and wider contexts (Shakespeare, 2018: 158). Furthermore, (critical) disability studies started to pay attention to the construction of categories and the role of culture (e.g. McRuer, 2006; Goodley, 2012), disabilities in non-Western contexts (e.g. Meekosha and Soldatic, 2011; Grech and Soldatic, 2016), to name a few more dimensions. One of the implications of this shift is that substantive equality is more relevant to persons with disabilities than formal equality that treats everyone as alike and thereby reinforces inequality (Katsui et al., 2014). Another timely observation is the increasing pressure from a neoliberalizing state that tries to delegitimize the disability movements and their collective agency (Soldatic, 2019: 28). These even more diversified and nuanced disabilities will be investigated in the case studies that follow.

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Along with the series of theoretical changes and developments, the WHO’s International Classification of Functioning, Disability and Health (ICF) was established to go beyond the medical approach to disability by combining elements of the social model of disability. The ICF gained considerable influence globally (Mitra and Shakespeare, 2019). Yet, this model has been also criticized for its health-centred approach. Mitra and Shakespeare (2019) urge revision of ICF due to: 1) its ontological approach to health without paying attention to personal and environmental factors to health; 2) its narrow understanding of people based only on body functions, activities and participations without having more holistic understanding of well-being and quality of life; and 3) its little attention to agency. More nuanced approaches to disabilities have been developed both in academia and in practice. The Capability Approach of Amartya Sen (1999a, 1999b) redefined development as freedom and wellbeing measured not by income and consumption but as freedom and choices and thus opportunities. Freedom is affected by three conversion factors: personal characteristics (such as metabolism, physical condition, sex, reading skills, intelligence), social characteristics (such as public policies, social norms, discriminating practices, gender roles, societal hierarchies, power relations), and environmental characteristics (such as climate, infrastructure, institutions, public goods). (Robeyns, 2003, cited in Frediani, 2010: 176). This deconstruction of a development concept by moving away from a utilitarian approach was an important sign in the development discourse to include many other dimensions into consideration. It was significant in the sense that an economist proposed this approach in 1990s that finally mainstreamed persons with disabilities, unlike Rawl’s conscious exclusion of persons with disabilities from his theory of justice (Riddle, 2014). As mentioned before, by then these issues had already been discussed and theorized in Disability Studies over the several decades, but the significance of the mainstream discipline of economics to start theorizing disability inclusion through inclusion of marginalized groups was a turning point in the theoretical and practical development of disabilities. Sen (1995) criticized approaches that measure wellbeing in terms of utility because, for example women frequently exhibit adaptive preferences that have adjusted to their second-class status. Even if one is entitled to some rights, that is often not materialized because of inequalities within the group, such as families and societies (Nussbaum 2003: 39). Nussbaum (2003, 2006) reiterated the criticism against the utilitarianism and against equality in resources, because what each person needs to materialize one’s capability is different from each other. She highlights injustice and distributional inequalities and points out that the human rights of persons with disabilities is one of the “serious unsolved problems of justice” and stresses the importance of capabilities of each human (2006: 3). The capability approach and human rights (not necessarily human rights-based approaches) “cover the same terrain” (Nussbaum, 2003: 36).

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Disabilities started to be understood as relational and interaction between people and their environments. For instance, in Nordic countries on the one hand, one of the biggest challenges for many persons with disabilities is the severe climate including heavy snow (Traustadóttir, 2004). On the other hand, lack of spectacles causes more functional challenges to those in Uganda, and as many as 35% of persons with disabilities are those with visual impairment (MFPEDU, 2008: 7–8). Another example is the status of people with Albinism in some East African countries such as Tanzania, where they are not only socially marginalized but also targets of witchcraft-related killing (Associated Press, 2009). In India and Egypt, infertility is culturally understood as an impairment (Inhorn and Bharadwaj, 2007), while it is not much on the agenda of the global disability movement today except when it pertains to the reproductive health rights of persons with disabilities (Ahumuza et al., 2014; Peta and McKenzie, 2019). Obesity, alcoholism (Herndon, 2011), Attention Deficit Hyperactivity Disorder (ADHD) (Vehmas, 2011: 164), invisible chronic diseases (Jung, 2011) (among others) are ambiguous. Goodley et al. (2019: 213–214) take autism and ADHD as examples of new diagnoses that globally impacted on disability discourse. They argue that people in this century are more likely than their twentieth-century counterparts to come into contact with the disability discourse as a result. In other words, disabilities are situational and contextual (Traustadóttir, 2009) and cultural relativism is relevant. Traustadóttir continues to point out that disabilities are also relative. For instance, medical measurements and indicators change over time for defining impairments, and new diagnoses appear. Thus, social constructionism is also relevant. Consequently, Shakespeare (2006: 55–56) urges to elaborate disabilities with a holistic and non-reductionist approach. The aforementioned are a few examples to explain why a universal definition has been difficult in practice. Conversely, elaboration on the concept of persons with disabilities and/or disabilities in each country implies the diverse realities of lives of persons with disabilities in that specific context. Human rights-based approaches to disability The human rights-based approaches to disability (OHCHR, 2006) entered into the global disability movement at this conjunction when many other rights and dimensions were raised as an important and integral part of people’s lives. The theoretical distinction between a charity-based approach and a human rights-based approach can be simplified and summarized in Table 2.1. The goal of the charity-based approach is to fill the gaps of needs experienced by persons with disabilities with the initiative of givers. In this context, persons with disabilities are objects of charities. There is no legal obligation for charitable activities. Only givers decide to commit themselves to this action. On the contrary, the goal of the human rights-based approach is to fulfil aimed human rights by complying with human rights principles based on different sets of analyses. The biggest difference is the agency and self-determination right of

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Table 2.1 Theoretical distinctions between a charity-based approach and a human rights-based approach

Charitybased approach Human rights-based approach

Goal

Individuals

Responsibilities based on

Filling the gaps of (often material) needs

Objects of charity, “beneficiaries”

Discretion of givers, no obligations

Fulfilling aimed human rights in a human rights-sensitive manner particularly for the most marginalized people

Subjects as rightsholders as well as duty-bearers in different contexts

National and international law-oriented obligations and accountability for fulfilling the rights of individuals

(Adapted from Katsui, 2012: 25.)

persons with disabilities as rights-holders in a human rights-based approach. The responsibility of the human rights realization is based primarily on international laws but also national laws that comply with international laws. However, the dichotomy is not crystal-clear in reality, which will become evident in the following case studies in different contexts. Globalization has affected the disability movement in many senses when the disability movement itself had been globalized especially since 1980s, as was exemplified in the establishment of the Disabled People’s International, an international organization of persons with cross-disabilities, in 1981 in Canada. The disability movement took a step to a human rights-based approach when it started to link with the global discourse on human rights and development, and subsequently on international laws, more precisely enactment of an international law. The global disability movement and participation of representatives of persons with disabilities from around the world led to the United Nations’ CRPD in 2006, which came into force in 2008. This Convention, which is a legally binding instrument when ratified, has brought several added values to the discourse of disability rights. First, the making of the Convention was an empowerment process in itself participated in by a large number of persons with disabilities. This has brought visibility of disability into the discourse of human rights and that of development. Second, the Convention has set clear definitions and general principles, such as disability, non-discrimination and reasonable accommodation, that broadened the human rights agenda not only restricted to state–individual relationship but also to inter-personal relationships. As a result, a human rights-based approach to disability has been promoted. Thirdly, procedural advances have been made in the Convention with a clear national monitoring framework for implementation involving organizations of persons with disabilities (Scheinin, 2012: Katsui and Kumpuvuori, 2012).

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Hisayo Katsui In the Convention, some of the key concepts are defined as follows.

“Disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others.” “Discrimination on the basis of disability as any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including a denial of reasonable accommodation.” Reasonable accommodation means “necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms.”

In 2013, for the first time in the UN history, the UN General Assembly focused on disability and development at the High-level Meeting on Disability and Development, at which heads of states made further promises of their commitment to the realization of disability rights in their respective contexts. The Statement by the Secretary General (2013) as well as the Outcome Document of the High-level Meeting facilitated the inclusion of disability in the Sustainable Development Goals (SDGs) adopted by the member states of the UN a couple years later in September 2015. Clear references to disability and also to vulnerable people were made in the SDGs, unlike in the Millennium Development Goals preceding the SDGs, due to which many national and international efforts then did not pay much attention to the inclusion of persons with disabilities (United Nations, 2011). At the level of global policy, the SDGs have the slogan “leaving no one behind” that finally and explicitly mainstream persons with disabilities to the discourse of global development. Disability was referred to in seven targets and people in vulnerable situations in six targets in the SDGs, which led to the clear message to monitor and evaluate the progress by disaggregating the data. Today, many more disability inclusive or disability inclusion guidelines and frameworks have been created. Degener (2017: 41) claims that human rights-based approaches are a better alternative to the social model of disability. Indeed, this approach started to become the mainstream and hegemony. In this book, however, we have not taken this approach nor human rights for granted. Needless to say, we investigated disability and poverty in a local context in which the rights are translated into practice. This is important, as Swartz (2019: 62) clearly summarizes that the politics of knowledge requires us to see

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knowledge as not neutral. This approach has been used as an analytical tool to understand complex power relationships, while critically elaborating them at the same time.

References Ahumuza, Sharon Eva, Matovu, Joseph K.B., Ddamulira, John Bosco and Muhanguzi, Florence Kyoheirwe. (2014) Challenging in Accessing Sexual and Reproductive Health Services by People with Physical Disabilities in Kampala. Reproductive Health Journal 11 (Uganda). Available at: https://reproductive-health-journal.biom edcentral.com/articles/10.1186/1742-4755-11-59 (accessed 19 December 2019). Associated Press. (2009) Albinos in East Africa Fear for Lives after Killings (28 November2009. Available at: http://www.msnbc.msn.com/id/34182250/ns/world_ news-africa/t/albinos-east-africa-fear-lives-after-killings/#.TyE0tZg6b-Y (accessed 26 January 2012). Beckett, Angharad E. (2006) Understanding Social Movements: theorising the disability movement in conditions of late modernity. The Sociological Review 54(4) (November), 734–752. Degener, Theresa. (2017) A New Human Rights Model of Disability. In Valentina Della Fina, Rachele Cera and Giuseppe Palmisano (eds). The United Nations Convention on the Rights of Persons with Disabilities. Cham, Switzerland: Springer, 41–59. Despouy, Leandro. (1993) Human Rights and Disabled Persons. New York: United Nations. Finkelstein, Vic and French, Sally. (1993) Towards a Psychology of Disability. In J. Swain, V. Finkelstein, S. French and M. Oliver (eds). Disabling Barriers – Enabling Environments. London: Sage Publications, 278–284. Frediani, Alexandre Apsan. (2010) Sen’s Capability Approach as a Framework to the Practices of Development. Development in Practice 20(2), 173–187. French, Sally. (1994) What is Disability? In S. French (ed.) On Equal Terms. Oxford: Butterworth-Heinemann Ltd., 3–16. Giddens, Anthony. (1993) Sociology. Oxford: Policy Press. Goodley, Dan. (2012) Dis/entangling Critical Disability Studies. Disability and Society 28(5), 631–644. Goodley, Dan, Lawthom, Rebecca, Liddiard, Kirsty and Runswick-Cole, Katherine. (2019) Towards a DisHuman Civil Society. In Brian Watermeyer, Judity McKenzie and Leslie Swartz (eds) The Palgrave Handbook of Disability and Citizenship in the Global South. Cham, Switzerland: Palgrave Macmillan, 211–222. Grech, Shaun and Soldatic, Karen. (2016) Disability in the Global South. Cham, Switzerland: Springer. Hasler, Frances. (1993) Development in the Disabled People’s Movement. In J. Swain, V. Finkelstein, S. French and M. Oliver (eds). Disabling Barriers – Enabling Environments. London: Sage Publications, 278–284. Herndon, April. (2011) Desperate but Disabled: Fat Embodiment and Disability Studies. In Kim Q. Hall (ed.) Feminist Disability Studies. Bloomington and Indianapolis: Indiana University Press, 245–262. Inhorn, Marcia C. and Bharadwaj, Aditya. (2007) Reproductively Disabled Lives: Infertility, Stigma, and Suffering in Egypt and India. In Benedicte Ingstad and

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Susan R. Whyte (eds) Disability in Local and Global Worlds. Berkeley and Los Angeles: University of California Press, 78–106. Jung, Karen E. (2011) Chronic Illness and Educational Equity: The Politics of Visibility. In Kim Q. Hall (ed.) Feminist Disability Studies. Bloomington and Indianapolis: Indiana University Press, 263–286. Katsui, Hisayo. (2012) Disabilities, Human Rights and International Cooperation: Human Rights-Based Approach and Lived Experiences of Uganda Women with Disabilities. Publication Series No. 8. Helsinki: The Center for Human Rights of Persons with Disabilities. Katsui, Hisayo and Kumpuvuori, Jukka. (2012) Human Rights-Based Approach in the Ugandan Disability Movement: A Fairy Tale of Self-Determination and SelfAdvocacy? Journal of Disability and International Cooperation 2012(3), 9–14. Katsui, Hisayo, Ranta, Eija M., Yeshanew, Sisay A., Musila, Godfrey M., Mustaniemi-Laakso, Maija and Sarelin, Alessandra. (2014) Reducing Inequalities: A Human Rights-Based Approach in Finland’s Development Cooperation with Special Focus on Gender and Disability. Turku: Institute for Human Rights. Lorenzo, Theresa and Coleridge, Peter. (2019) Working Together: Making Inclusive Development a Reality. In Brian Watermeyer, Judith McKenzie and Leslie Swartz (eds) The Palgrave Handbook of Disability and Citizenship in the Global South. Cham, Switzerland: Palgrave, 233–248. McRuer, Robert. (2006) Crip Theory: Cultural Signs of Queerness and Disability. New York: New York University Press. Meekosha, Helen and Soldatic, Karen. (2011) Human Rights and the Global South: The Case of Disability. Third World Quarterly 32(8), 1383–1397. MFPEDU (Ministry of Finance, Planning and Economic Development of Uganda) (2008) Disability and Poverty in Uganda: Progress and Challenges in PEAP Implementation 1997–2007. National Report. Kampala, Uganda: Ugandan Government. Mitra, Sofie and Shakespeare, Tom. (2019) Remodeling the ICF. Disability and Health Journal. Doi: doi:10.1016/j.dhjo.2019.01.008 Morris, Jenny. (1991) Pride against Prejudice. London: The Women’s Press. Nussbaum, Martha. (2003) Capabilities as Fundamental Entitlements: Sen and Social Justice. Feminist Economics 9(2–3), 33–59. Nussbaum, Martha. (2006) Frontiers of Justice: Disability, Nationality, Species Membership. Cambridge, MA: Harvard University Press. OHCHR. (2006) Frequently Asked Questions on Human Rights-Based Approach to Development Cooperation. New York: United Nations. Oliver, Michael. (1990) The Politics of Disablement. London: Macmillan. Oliver, Michael. (1996) Understanding Disability: From Theory to Practice. Basingstoke: Macmillan. Peta, Christine and McKenzie, Judith. (2019) Bodies (Im)politic: The Experiences of Disabled Women in Zimbabwe. In Brian Watermeyer, Judith McKenzie and Leslie Swartz (eds) The Palgrave Handbook of Disability and Citizenship in the Global South. Cham, Switzerland: Palgrave Macmillan, 251–268. Pettigrew, Thomas F. (2002) Summing Up: Relative Deprivation as a Key Social Psychological Concept. In Iain Walker and Heather J. Smith (eds) Relative Deprivation: Specification, Development and Integration. Cambridge: Cambridge University Press, 351–373. Pleyers, Geoffrey. (2010) Alter-Globalisation: Becoming Actors in the Global Age. Cambridge: Polity.

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Riddle, Christopher A. (2014). Disability and Justice: The Capability Approach in Practice. Lanham, MD: Lexington Press. Ritzer, George (2005) Encyclopedia of Social Theory. Thousand Oaks, CA: Sage Publications. Scheinin, Martin. (2012) History of the Negotiation of the UNCRPD, Model and Legal Principles Adopted. Paper presentation at Human Rights of Persons with Disabilities in International and EU Law Workshop at European Union Institute on 27 April 2012, in Florence, Italy. Sen, Amartya. (1995) Gender Inequality and Theories of Justice. InM. Nussbaum andJ. Glover (eds) Women, Culture and Development. Oxford:Clarendon Press, 259–273. Sen, Amartya (1999a) Commodities and Capabilities. Oxford: Oxford University Press. Sen, Amartya. (1999b) Development as Freedom. Oxford: Oxford University Press. Sen, Amartya. (2005) Human Rights and Capabilities. Journal of Human Development 6(2), 151–166. Shakespeare, Tom. (2006) Disability Rights and Wrongs. London: Routledge. Shakespeare, Tom. (2018) Disability: The Basics. New York: Routledge. Soldatic, Karen. (2019) Disability and Neoliberal State Formations. New York: Routledge. Swartz, Leslie. (2019) Disability and Citizenship in the Global South in a Post-truth Era. In Brian Watermeyer, Judith McKenzie and Leslie Swartz (eds) The Palgrave Handbook of Disability and Citizenship in the Global South. Cham, Switzerland: Palgrave Macmillan, 57–66. Thomas, Carol. (1993) De-constructing Concepts of Care. Sociology 27(4), 649–669. Toch, Hans. (1965) The Social Psychology of Social Movements. New York: The Bobbs Merrill Company. Traustadóttir, Rannveig. (2004) Disability Studies: A Nordic Perspective. Presented at Disability Studies ConferenceLancaster, July 2004. Traustadóttir, Rannveig. (2009) Disability Studies, the Social Model and Legal Development. In O.M. Arnardóttir and G. Quinn (eds) The UN Convention of the Rights of Persons with Disabilities: European and Scandinavian Perspectives. Leiden: Martinus Nijhoff Publishers, 3–16. UNDESA (United Nations Department of Economic and Social Affairs). (n.d.) World Programme of Action Concerning Disabled Persons. Available at: https://www.un. org/development/desa/disabilities/resources/world-programme-of-action-concerningdisabled-persons.html (accessed 18 December 2019). United Nations. (1948) Universal Declaration of Human Rights. Available at: http:// www.un.org/en/universal-declaration-human-rights (accessed 27 November 2017). United Nations. (2011) Disability and the Millennium Development Goals: A Review of the MDGs Process and Strategies for Inclusion of Disability Issues in Millennium Development Goal Efforts. United Nations. New York. Available at: https:// www.un.org/disabilities/documents/review_of_disability_and_the_mdgs.pdf (accessed 18 December 2019). UN Secretary General. (2013) Secretary-General’s Statement at the High-Level Meeting of the General Assembly on Disability and Development. Available at: https:// www.un.org/sg/en/content/sg/statement/2013-09-23/secretary-generals-statem ent-high-level-meeting-general-assembly (accessed 20December 2019). Vehmas, Simo. (2011) Disability and Moral Responsibility. TRAMES 15(65/60), 2, 156–167. Available at: http://www.kirj.ee/public/trames_pdf/2011/issue_2/Tram es-2011-2-156-167.pdf (accessed 15 May 2012).

3

Methodology Hisayo Katsui

Our objective with this book is to elaborate on global disability rights that encompass pertinent and emerging themes such as disability rights, globalization, inequalities, international cooperation and representation. The 2006 UN Convention on the Rights of Persons with Disabilities has facilitated the understanding that disability is both a human rights and development issue. For achieving the Sustainable Development Goals (SDGs, Agenda 2030), the focus on disability inclusion has become increasingly important in the discourse of international and national efforts for “leaving no one behind”, the motto of the SDGs. However, evidence has been accumulated and generally tends to show that persons with disabilities have been disproportionally left behind without proper representation, participation and inclusion (UN, 2011; WHO and World Bank, 2011). The key questions are, therefore, the following.

1 2

3 4

How have global disability rights been localized and implemented in different contexts? What are the challenges and opportunities of a human rights-based approach to disability at the intersection of disability, globalization and human rights? What are the challenges and opportunities of participatory research on disabilities in different contexts? What possible strategies for Disability Studies are there for materializing social change in the near future?

The process of making the Convention was of value, when it was “a visibility project” (Scheinin, 2012). Now that the Convention is in place, the next step is to be sensitive to local environments, history and culture when localizing the human rights principles and implementing the Convention into practice. This is not at all an easy practice when many of local cultures do not embed the idea of disability inclusion to start with, and the history of disability exclusion has been deeply rooted in their realities. In this regard, localization of the Convention and

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operationalization of a human rights-based approach are a globally common challenge today. Therefore, the first research question is asked to elaborate on this very aspect of global disability rights pertaining to localization. Article 32 of the Convention, “International cooperation”, guides us to learn from lessons and good practice by paying careful and sensitive attention to local realities and cultures. The following case studies form independent chapters to elaborate on this in different geographical contexts pertaining to different sectors. The selected thematic areas are education, political participation, independent living, water and sanitation, and the global disability movement. The geographical locations include Ethiopia, Finland, Kyrgyzstan, Nepal, Tanzania and Uganda. Based on the case studies, the second research question brings us to issues around collective experiences regarding similar challenges and opportunities observed in the case studies beyond geographical locations and thematic areas. The discussion chapter will be dedicated to a discussion of the second research question so as to understand disabilities from a global perspective. In other words, this part theorizes a human rights-based approach in operationalizing global disability rights. The third research question deals with the methodological realm of the participatory research approach which has been indispensable in the establishment and development of Disability Studies to go against the hitherto predominant medical sciences in which medical professionals have had the control over knowledge creation and thereby having a profound impact on the decision making of persons with disabilities over their lives. After the global disability movement’s eloquent interventions to international human rights policy with the motto, “Nothing about us without us”, persons with disabilities have become an important part of disability research not merely as objects of research but more as subjects. This means that in the book we have investigated a human rights-based approach within research on disabilities. More precisely, the participatory research approach in this research was analysed pertaining to its feasibility, effects (both successes and failures) and the lessons it yields. Fourthly, based on the findings of all the above, I have tried to present possible strategies for Disability Studies to develop further into a more established discipline to have both academic and social impacts on substantive equality. The answers to the fourth research question are presented in the concluding remarks of this book. Disability Studies were developed in the struggle of the disability movement in various parts of the world, which has now developed into an academic discipline. Yet, it has been a continuous struggle for disability scholars, as resources are scarce when disability continues to be understood as a minor issue of a small, special group of people (UN, 2018). Some austerity measures have had a strong tangible impact on both academia and the disability movement in many countries where resources have been scarce (Briant et al., 2013; Soldatic, 2018). Under the circumstance in which neoliberalism and its market principles have also been increasingly penetrated in the academic world, this is a crucial question to stop and ponder upon. We

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are at the crossroads for showing perhaps the most important value of Disability Studies, which is to provide evidence of alternative ways of thinking and doing in the global society.

Participatory research approach Katsui and Koistinen (2008) summarised the development of participatory research approach as follows. Discipline of development studies started to focus on participation by local people in the 1970s in the modality of rapid rural appraisal (RRA) (Havel, 1996), which then developed into the participatory rural appraisal (PRA) in the 1980s and 1990s (Chambers, 1983, 1992, 1993, 1997). The participatory approach became important for development practices. Along with the development, the ideology of participation by “the poorest of the poor” in the research process started to gain support (Chambers, 1997). In the 1980s, the ineffectiveness of externally imposed and expert-oriented forms of research and planning became increasingly evident. Major donor and development organizations also began to adopt a participatory approach (Cooke and Kothari, 2002: 5). However, participation in research by persons with disabilities in the Global South has been historically limited (Stone and Priestley, 1996; Turmusani, 2003) and only recently began to be accumulated (Grech and Soldatic, 2016). The basic ideology behind the participatory research approach is the acknowledgement that marginalized groups have specific knowledge about their own lives which needs to be valued. The aim is to reduce distance and power between the researcher and the “research subjects.” Development of the participatory research approach in the discipline of Disability Studies was rather recent, as the role of persons with disabilities in research has received increased attention in the North only since the late 1980s (Barnes et al., 1999). It was then that disability research began to be heavily criticized for medicalizing disabilities and not making positive changes in the lives of persons with disabilities (Carmichael, 2004). The social model of disabilities has played a significant role in changing the paradigm of doing disability research. Disability activists and scholars have promoted increased participation by persons with disabilities in research based on the social model framework. The emancipatory research approach was promoted to advance the interests of oppressed groups, to enable their empowerment in the research process and to create usable knowledge to challenge the discriminating structure (Deepak, 2012; Finkelstein, 1999; Walmsley and Johnson, 2003). The participatory approach explores relevant issues for persons with disabilities in the form of a partnership with persons with disabilities. This means that persons with disabilities are expected to play an active role in the research. A key demand for the emancipatory paradigm has been that there should be meaningful input by persons with disabilities at all stages of the research process (Barnes et al., 1999; EducAid, 2014). The difference between the participatory and emancipatory approaches could perhaps be encapsulated in the level of power that the “research subjects” have,

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this being much greater in the latter. Emancipatory research is as much a form of political action as it is research (Walmsley, 2001). Both approaches aim at empowerment and equality as their ultimate goals. For further discussions on the development of and differences between the participatory and emancipatory approaches see, for instance, Zarb (1992), Oliver (1997), Ward (1997), Barnes et al. (1999), Mercer (2004), Bailey (2004) and Walmsley (2001). On one hand, the general strengths of a participatory research method are that such research 1) can be based on local perceptions and priorities, 2) can rapidly collect large amounts of data, 3) captures diversity, 4) increases the voice of the most vulnerable, and 5) can empower the stakeholders, among others. On the other hand, its general weaknesses are that such research 1) is maybe too context-specific, 2) is over-influenced by power relations, 3) poses difficulties in controlling who attends, 4) leads to unrealistic expectation, 5) may make some people more vulnerable, among others (Mayoux, 2006: 119). The case studies tried to maximize the strengths of the method, while minimizing its weaknesses with several conscious choices that will be elaborated later. The participatory research approach in an ideal scenario can be defined as follows. The Participatory Research Approach to Disability aims at the participation of the researched people, more precisely persons with disabilities, in the research process, thereby filling some of the power gaps between the researchers and the researched people in disability-related knowledge creation process. The researched people are active research participants rather than passive object of the research, when they so wish. The participatory research process does not mean that the researched people merely offer data for instance through their interviews. It includes, but is not limited to, collaborations between the researcher and the researched people in identifying key research questions, planning and designing the research, collecting and/or providing data, analysing and interpreting the data, co-authoring publications, and sharing the results. The research participants are provided with opportunities to make their decisions on, when and how to participate and not to participate in the research process. The participation is voluntary, and withdrawal is possible without any penalty. This approach means that the research process becomes transparent to the research participants and possibly also beyond. In the research process, the research participants might also acquire some academic skills. When the research findings are ready, they are relevant and evidence-based, and thus useful and usable to the researched people towards their equal opportunities. The research findings are also carefully produced to be accessible and shared with the research participants and beyond. (Katsui, 2007) That is, co-production of knowledge is sought out, as recommended by the Office for Disability Issues (2010). However, we cannot give an overly romanticized expectation regarding the research using a participatory

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research approach. We have to be clear about research outcomes in that we cannot promise a dramatic social impact because the research is only part of society and because any single piece of research cannot make such a significant change especially with limited resources and time (between one and five years per case study). We shall come back to discuss these methodological issues after the case study chapters.

References Bailey, K. (2004) Learning More from the Social Model: Linking Experience, Participation and Knowledge Production. In C. Barnes and G. Mercer (eds) Implementing the Social Model of Disability: Theory and Research. Leeds: Disability Press. Barnes, C., Mercer, G. and Shakespeare, T. (1999) Exploring Disability: A Sociological Introduction. Cambridge: Polity Press. Briant, Emma, Watson, Nick and Philo, Gregory. (2013) Reporting Disability in the Age of Austerity: The Changing Face of Media Representation of Disability and Disabled People in the United Kingdom and the Creation of New ‘Folk Devils’. Disability and Society 28(6), 874–889. Carmichael, A. (2004) The Social Model, The Emancipatory Paradigm and User Involvement. In C. Barnes and G. Mercer (eds) Implementing the Social Model of Disability: Theory and Research. Leeds: Disability Press. Chambers, R. (1983) Rural Development: Putting the Last First. London: Longman. Chambers, R. (1992) Rural Appraisal: Rapid, Relaxed, and Participatory. IDS Discussion Paper 311. Falmer, UK. University of Sussex Institute of Development Studies. Chambers, R. (1993) Challenging the Professions: Frontiers for Rural Development. London: Intermediate Technology Publications. Chambers, R. (1997) Whose Reality Counts? Putting the First Last. London: Intermediate Technology Publications. Cooke, B. and Kothari, U. (2002) Participation: The New Tyranny?London: Zed Books. Deepak, S. (2012) Emancipatory Research in Community-Based Rehabilitation (CBR) Programmes: A Guide for CBR Programme Managers. Available at: http://www. aifo.it/english/proj/research/sparkcbr/attachments/ER_in_CBR_manual_draft02.pdf (accessed 7 March 2012). EducAid. (2014) Emancipatory Disability Research: Gaza Strip, Palestine. EducAid. Available at: https://www.firah.org/upload/notices3/2014/emancipatory-disability-re search.pdf (accessed 19 November 2019). Finkelstein, V. (1999) Doing Disability Research. Disability & Society 14(6), 859–867. Grech, Shaun and Soldatic, Karen. (2016) Disability in the Global South. Cham, Switzerland: Springer. Havel, V. (1996) The World Bank Participation Sourcebook. World Bank. Available at: http://www.worldbank.org/wbi/sourcebook/sbhome.htm (accessed 2 February 2008). Katsui, H. (2007) Participatory Research Method - What Do You Think? Available at: http://disability-uganda.blogspot.com/2007/09/participatory-reseach-method-whatdo.html (accessed 29 September 2007). Katsui, H. and Koistinen, M. (2008) Participatory Research Approach in Non-Western Countries: Practical Experiences from Central Asia and Zambia. Disability and Society 23(7): 747–757.

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Mayoux, L. (2006) Quantitative, Qualitative or Participatory? Which Method, for What and When? In V. Desai and R.B. Potter (eds) Doing Development Research. London: Sage Publications, 112–129. Mercer, G. (2004) From Critique to Practice: Emancipatory Disability Research. In C. Barnes and G. Mercer (eds) Implementing the Social Model of Disability: Theory and Research. Leeds: Disability Press. Office for Disability Issues. (2010) Involving Disabled People. Available at: https:// webarchive.nationalarchives.gov.uk/20130703133511/http://odi.dwp.gov.uk/invol ving-disabled-people/index.php (accessed 9 January 2020). Oliver, M. (1997) Emancipatory Research: Realistic Goal or Impossible Dream? In C. Barnes and G. Mercer (eds) Doing Disability Research. Leeds: Disability Press. Scheinin, Martin. (2012) History of the Negotiation of the UNCRPD, Model and Legal Principles Adopted. Paper presentation at Human Rights of Persons with Disabilities in International and EU Law Workshop at European Union Institute on 27 April 2012, in Florence, Italy. Soldatic, K. (2018) Neoliberalising Disability Income Reform: What Does This Mean for Indigenous Australians Living in Regional Areas? In D. Howard-Wagner, M. Bargh and I. Altimarino-Jimenez (eds) Indigenous Rights, Recognition and the State in the Neoliberal Age. Canberra: ANU E Press. Stone, E. and Priestley, M. (1996) Parasites, Pawns and Partners: Disability Research and The Role of Non-Disabled Researchers. British Journal of Sociology 47(4), 699–716. Turmusani, M. (2003) Disabled People and Economic Needs in the Developing World. A Political Perspective from Jordan. Aldershot: Ashgate. United Nations. (2011) Disability and the Millennium Development Goals: A Review of the MDG Process and Strategies for Inclusion of Disability Issues in Millennium Development Goal Efforts. New York: United Nations. Available at: http://www.un.org/ disabilities/documents/review_of_disability_and_the_mdgs.pdf (accessed 6 March 2020). United Nations. (2018) Disability and Development Report: Realizing the Sustainable Development Goals by, for and with Persons with Disabilities. New York: United Nations. Available at: https://social.un.org/publications/UN-Flagship-Report-Disa bility-Final.pdf (accessed 23 December 2019). Walmsley, J. (2001) Normalisation, Emancipatory Research and Inclusive Research in Learning Disability. Disability & Society 16(2), 187–205. Walmsley, J., and Johnson, K. (2003) Inclusive Research with People with Learning Difficulties: Past, Present and Futures. London: Jessica Kingsley. Ward, L. (1997) Funding for Change: Translating Emancipatory Disability Research from Theory to Practice. In C. Barnes and G. Mercer (eds) Doing Disability Research. Leeds: Disability Press. WHO and World Bank. (2011) The World Report on Disability. Geneva: WHO. Zarb, G. (1992) On the Road to Damascus: First Steps Toward Changing the Relations of Research Production. Disability, Handicap and Society 7(2), 125–138.

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Disability and vulnerability1 A human rights reading of the responsive state Mikaela Heikkilä, Hisayo Katsui and Maija Mustaniemi-Laakso

Introduction In recent times, one of the buzzwords in the human rights discourse (and beyond) has been ‘vulnerability’. The expansion of vulnerability reasoning may be seen as indicative of a trend towards particularisation of human rights law, where universal human rights of all are complemented with special protection of some, especially those that traditionally have been left behind. The adoption of special measures of protection and/or of affirmative action to ensure substantive equality for persons with disabilities is an example of this. Interestingly, however, vulnerability as a concept is notoriously absent from the mainstream discussions on disability, probably due to the stigma that the notion is perceived to carry and the way it is seen to internalise and individualise disability as an ontological factor, thereby contributing to the normalisation of the existing power relations within societies (Clough, 2017). The situation begs the question of the role and function of the vulnerability paradigm as a structural element of human rights in approaching disability. This chapter argues that much of this question essentially boils down to the interplay – or the contradiction, as one may put it (cf. Petman, 2009: 20)2 – between the universal and the particular in the human rights project. By juxtaposing the ideas of particularity and universality, the chapter studies vulnerability as a particularising tool within human rights with a comparative approach to the influential vulnerability theory by Martha Fineman. By outlining the similarities and the differences between the two approaches, the chapter sheds light on how the particular protection needs of persons with disabilities play out in the (universalistic) logic of vulnerability. This chapter first explores how the human rights project has moved from the view of the human as an autonomous liberal subject to a more multifaceted understanding of the legal subject that recognises different degrees of autonomy and vulnerability. The way in which international human rights law approaches disability is a case in point exemplifying this development. From being something that is not really acknowledged at all, disability and impairment have in today’s international human rights become to be recognised as

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factors that specify or particularise states’ obligations towards individuals. Against this background, the chapter explores how the idea of a ‘responsive state’ has been framed within the two approaches and contemplates upon the relationship between the ‘particularity’ of an individual and the search for universality of resilience-building measures. Universality, it is submitted, does not exclude individualisation of the measures. Discussing examples drawn from the experiences of persons with disabilities, the chapter reasons that while state obligations are universal of their nature, that is, owed to all individuals in the same fashion, targeted special measures are needed to ensure the accessibility, adaptability, affordability and availability of societal structures to all persons with disabilities. In conclusion, it is submitted that valuable lessons on how to understand and address human vulnerability can be learnt both from the more theoretical framework of the vulnerability theory and the more hands-on approach to vulnerability in human rights law.

Vulnerability and the move away from the idea of the liberal subject The changing view of the individual as the subject of law and protection A core principle in international human rights law is that of universal application, emphasising the fact that human rights belong to everyone; we all hold the same universal rights (e.g. Nifosi-Sutton, 2017: 28; Arnardóttir, 2009: 42). Historically, such universalism was largely built on the idea of the liberal subject capable of claiming his or her rights, the ‘archetype of the autonomous, free-standing individual’ (O’Cinneide, 2009: 170). For some time now, however, a clear shift in thinking has taken place within human rights law, with a growing realisation that whereas rights are universal and the same for everyone, there are groups and individuals who face particular challenges in having their human rights realised (cf. Gourevitch, 2009: 301).3 One such group is persons with disabilities whose human rights have often been denied both in law and in practice (Mégret, 2008: 500; Palacios and Walls, 2006: 128). This realisation of particular vulnerability has resulted in a shift in thinking through which more targeted measures and obligations have been put in place and are seen as a necessary element to the universal protection of rights. The resulting search for substantive equality through affirmative action is characteristic of the human rights project of today. Within human rights law, substantive equality is pursued through a multilane approach. One such lane is to accommodate the special needs of vulnerable groups by interpreting general human rights instruments in a way that ensures attention to particular needs. In relation to disability, this is something that often has largely remained undone with disability traditionally remaining ‘an invisible element of international human rights law’ (Kayess and French, 2008: 12). Lately, however, various international courts and treaty bodies have started to pay more attention to disability and disability has been increasingly included as a topic in general comments and reporting

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regarding general human rights instruments (see, for example, General Comment 5, 1994; General Comment 9, 2006; Report, 2007). Through case law, the applicability of general human rights instruments to cases involving disability has also been clarified. For example, the European Court of Human Rights (ECtHR) has adopted an approach that requires affirmative action from states to ensure substantive equality.4 Human rights treaties may also include provisions that attach specific attention to particular groups. Such a provision is, for example, Article 23 of the Convention on the Rights of the Child in which the States Parties recognise ‘the right of the disabled child to special care’.5 Notably, special protection for particular groups is also sought for through a number of special human rights instruments or ‘thematic conventions’, which have as their aim to address particular protection needs and challenge the idea of the liberal subject that is automatically and autonomously capable of claiming his or her human rights. An example of such a group-specific human rights instrument is the Convention on the Rights of Persons with Disabilities (CRPD) that was adopted in 2006.6 Given the fact that general human rights instruments, or their implementation, do not always fully accommodate the particular needs and experiences of some individuals, the special conventions such as the CRPD are seen to have a corrective function (Mégret, 2008: 497). ‘These are the afterthoughts, provisions for specific groups of people who were not part of the original bargain and whose rights were thus felt, in the years to come, to be in need of special protection’, as Petman notes (2009: 24). The CRPD’s aim is hence to ensure that human rights are ensured in relation to persons with disabilities through ‘tailor[ing] the existing suite of general human rights to the specific situation of persons with disabilities’ (Quin,, 2009: 100). Beside such special conventions and the interpretation of general human rights to the benefit of vulnerable individuals, special protection has in human rights law lately increasingly also been striven for through the utilisation of the concept of ‘vulnerability’. The augmented use of the term in human rights law has sometimes even been seen as a sign of the ‘vulnerabilisation’ of the law (Ippolito and Sánchez, 2015: 5).7 An example of this is the rich vulnerability case law of the ECtHR, which the Court has developed in particular since the Chapman v the United Kingdom case of 2001 recognising that the Roma should be given special protection due to their vulnerable position as a minority.8 Since Chapman, the ECtHR has recognised several other groups, including persons with disabilities, as particularly vulnerable.9 In Alajos Kiss v Hungary, for example, the ECtHR referred to persons with mental disabilities as ‘a particularly vulnerable group in society’.10 It may be argued that the ECtHR’s vulnerability case law functions according to the same logic as the special conventions. The underlying rationale for both is that special measures are sometimes needed for individuals to enjoy their human rights. Despite the increased focus on vulnerability in human rights law, the concept of ‘vulnerability’ has, however, remained rather

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elusive in the law, most notably in terms of its definition (e.g. Peroni and Timmer, 2013: 1064). From this perspective, it is interesting that around the same time as the ECtHR’s vulnerability case law expanded, Professor Martha Albertson Fineman introduced her influential vulnerability theory, first published in 2008 (Fineman, 2008: 1–23). Fineman has herself explained the naissance of her theory as an originally a human rights theory for the American audience (Fineman, 2013: 13).11 In essence, also the vulnerability theory is a critique of the liberal subject as the foundation of law (e.g. Fineman, 2019: 355−6). According to Fineman, ‘the abstract legal subject of liberal Western democracies fails to reflect the fundamental reality of the human condition’ (Fineman, 2017: 133). In lieu of resting on the premise of the liberal autonomous individual, she argues, societal design and law should take as their starting point an understanding of human vulnerability as something universal and constant (ibid.: 134). In the same line of thought as the mechanisms for special protection within the human rights project, the theory thus directs criticism against a view of humans as self-sufficient and independent (ibid.: 139). Below, the ideas of vulnerability and dependence are explored further with an emphasis on vulnerability in the context of disability. Changing paradigms of persons with disabilities as vulnerable subjects Parallel to the recognition of the fact that special measures are needed to address vulnerability, the view on how we comprehend human particularity as such has undergone paradigmatic changes. This has happened at several fronts, but an especially interesting example is the development that has taken place in how we perceive persons with disabilities as vulnerable subjects of the law. Understanding the global history of disability rights helps us to grasp these changes in the conceptualisation of the vulnerability of persons with disabilities over time and today. For long, disability remained largely an invisible element of human rights law and it was not until 1975 that disability entered the mainstream human rights thinking with the Declaration on the Rights of Disabled Persons (UNGA, 1975). This was followed in 1982 by the publication of the World Programme of Action Concerning Disabled People (UNGA, 1982), which restated the distinction made between impairment, disability and handicap introduced by the World Health Organization in the 1970s.12 This medical model of disability represented a medically oriented understanding of disability, under which social disadvantages and vulnerabilities were considered to arise as a direct consequence of individual impairment (Barnes, 1991: 1−2.). This approach to disability was extensively challenged by the disability community for individualising disability and victimising persons with disabilities, thereby stigmatising them (e.g. Goodley, 2014: 105−30; Grue, 2016: 957−64). It was argued that more than the medical ‘facts’ were needed in order to understand disability as a collective experience in society, which goes beyond the existence or experience of individual persons with disabilities. Out

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of this process emerged a social model of disability, which contests the very assumption of ‘normality’ and re-defines disability as a form of social oppression (French, 1994: 3−16). The term ‘disabled people’ was used to highlight and to politicise the fact that the society and its structures created disability. With the social model of disability, it was increasingly realised that disability arose from the way societies were organised, not from the individual difference or impairment. As a consequence, contextual factors became a more important focus than impairments to deconstruct social vulnerabilities and oppressions and the responsibility for the collective vulnerabilities of persons with disabilities was shifted to the society at large. This approach to the vulnerability of persons with disabilities is inherent also in the CRPD, which recognises disability as resulting ‘from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others’.13 The social model shares many of the elements that are also inherent in the theory on vulnerability by Fineman. Both of the approaches start from the premise that our understanding of vulnerability should transcend the idea of vulnerability as an identity category, to rather see it as something that gives rise to obligations upon the state and other actors to accommodate such vulnerability and difference. As noted above, for Fineman, vulnerability is something constant and universal, following from the fact that humans as embodied beings are continuously susceptible to change in their bodily (and social) wellbeing. That is, there is always a possibility for harm, injury and misfortune (e.g. Fineman, 2008: 9).14 In this way, the theory deconstructs the able-v. disabled binary (see further, Clough. 2017: 469−81; Knight, 2013: 15−26), much in line with the social model of disability. In Fineman’s theory, a corollary to or consequence of human vulnerability is dependency, of which there are two main kinds (Fineman, 2017: 134 and 139). So-called inevitable dependency, which, according to Fineman, is universal (Fineman, 2015a: 620), but manifests itself in the ‘needs for care associated with certain biological and developmental stages of life’ (Fineman, 2017: 139). This type of a ‘physical or emotional dependence on others’ is also, according to her, often present in connection to disability (ibid.: 145; Fineman, 2015a: 620). In addition to inevitable dependence, Fineman conceptualises derivative dependency, that is, ‘burdens allocated to some societal roles or positions that operate to disadvantage the individuals who occupy them’ and which is socially imposed (Fineman, 2015a: 620−1). The theory emphasises that we all experience dependence and lack of autonomy in the different phases of our lives. Such dependency should therefore not be regarded as something deviant, but as an inevitable aspect of being a human (ibid.: 622). While Fineman’s theory strongly focuses on the all-human vulnerability and dependence, it also acknowledges difference between individuals. According to Fineman, such difference arises as a result of humans being both embodied and social beings embedded in social institutions and relationships (Fineman, 2017: 143). As embodied beings, humans experience

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different developmental stages (such as childhood and the becoming of age) and, for example, disability (ibid.: 144). As social beings, on the other hand, we are ‘differently situated within webs of economic, social, cultural, and institutional relationships that profoundly affect or destinies and fortunes’ (ibid.: 145). Interestingly, the factors that result in relevant differences between individuals are very similar in Fineman’s theory and in human rights case law. The ECtHR has characterised both certain persons as vulnerable (for example, persons with health issues and children),15 and, on the other hand, emphasised that sometimes individuals find themselves in vulnerable situations or positions. 16 This corresponds to the difference between inherent/embodied and situational/embedded vulnerability that often is made with reference to Fineman’s theory (see, for example, Mackenzie et al., 2014: 7.17 Regarding the latter, the ECtHR has, for example, given legal relevance to historical patterns of discrimination and stigma (see, for example, O’Boyle, 2015; Zimmermann, 2015: 540−1), as well as to particular situations of dependency.18 As such, also in general human rights law we can see a move towards a greater emphasis being put on the societal creation of vulnerability. In sum, several shifts in thinking regarding both persons with disabilities as legal subjects, as well as the legal subject more in general have taken place over the years in the legal discourse. The liberal subject as a basis of laws and policies has at least partly been replaced with a more multifaceted understanding of the human condition in which vulnerability and dependence play a central role. Simultaneously, a move has taken place towards a greater emphasis on the disabling – and abling – contextual factors influencing our resilience and dependence as well as disability. With this in mind, a question arises as to what the consequences of such changes in our understanding of the legal subject are. How do such shifts affect the way we look at obligations incumbent on states in relation to addressing vulnerability of persons with disabilities?

The vulnerable subject and the responsive state: the rights-holder–duty-holder paradigms In the vulnerability theory, the most central consequence of the finding of universal vulnerability is the need for an active and responsive state that builds resilience.19 As per the vulnerability theory, resilience is ‘what provides an individual with the means and ability to recover from harm, setbacks, and the misfortunes that affect our lives’ (Fineman, 2017: 146). Societal institutions hold a prominent role in building such resilience and in ‘lessening, ameliorating, and compensating for vulnerability’ (Fineman, 2010: 269). Autonomy is possible but only with the support by institutions. Societal institutions provide individuals with different types of resilience-building assets: physical (e.g. housing and food); human (e.g. education); social (e.g. human networks); ecological (e.g. clean natural environment); and existential (e.g. religion and art) (ibid.: 270−1). In her theory, Fineman elaborates on how the different types of

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societal organisations and institutions affect human resilience, but state’s role is seen as central. ‘Many of the institutions providing resources that give us resilience can only be brought into legal existence through state mechanisms’, Fineman notes (ibid.: 272). Interestingly, while Fineman emphasises the role played by the state, she does not regard the law in the form of individual human/civil rights as central (Fineman, 2019: 342.). More specifically, she finds that the identity approach to equality that such legislation represents only has ‘a limited view on what should constitute governmental responsibility in regard to social justice issues’ (Fineman, 2010: 254). In other words, vulnerability theory rejects the idea of human rights as a viable ground for social justice and a responsive state due to its ‘individually focused [ … ] agenda that emphasizes formal equality and celebrates individual liberty and choice’, which, to Fineman ‘complicates the idea that the state can undertake positive action to effect something called social, or collective, justice’ (Fineman, 2019: 346; see also Fineman 2013: 13). According to the vulnerability theory, one must, instead, go beyond individualised rights-based arguments and demand more from societal institutions (Fineman, 2014: 311). This position, it is argued, seems, however, to be focused on human rights as individual entitlements, and to emphasise the obligation to respect, that is, the obligation of states to ‘refrain from acting in a way that unjustifiably interferes with [ … ] rights’ (Council of Europe, n.d.). At the same time, it appears to discount the flipside of rights, the strong elements of positive obligations inherent in each human right, operating not only ex post but most essentially also ex ante binding societies to take active measures towards the collective realisation of all individuals’ rights, both at a universal and at a particular level.20 At the universal level this means, in essence, that states are to contribute to the resilience of individuals to resist their vulnerability through the realisation of their human rights. While Fineman does not stress the role of rights in creating or upholding a responsive state, in the disability context rights hold a prominent role today. The move away from the medical approach to disability has meant a shift from a charity-based thinking to a rights-based thinking. In terms of law and policy, this means that persons with disabilities are recognised as full subjects of rights and as holders of their own rights.21 This is reflected, for instance, in Article 1 of the CRPD that stipulates that, the aim of the convention is to ‘promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by persons with disabilities’. In so doing, the CRPD emphasises that persons with disabilities are rights-holders whose human rights the signatory states abide to uphold.22 States carry positive and enhanced obligations with regard to realising the rights of persons with disabilities through appropriate legislative, administrative and other measures, including through amending or abolishing legislation or practices that discriminate against them, protecting against discrimination by non-state actors, taking measures to facilitate the development of universal design and spreading of accessible information and awareness-raising. By emphasising such positive

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obligations, the human rights-based approach to disability not only changed the role of persons with disabilities but also that of their counterparts, namely dutybearers. In the human rights-based model, duty-bearers are primarily the states that ratify the convention but also many others, including anybody involved in inter-personal relationships with persons with disabilities.23 In sum, the role of the state in the human rights system, one may argue, corresponds very much with the idea of a responsive state in the vulnerability theory: ‘one with a clear duty to effectively ensure realistic equality of access and opportunity to society’s resource-generating institutions for everyone regardless of their individual characteristics’, as described by Fineman (Fineman, 2015a: 613). In this sense, the idea of universal vulnerability requiring a responsive state, one could claim, is embedded in the positive human rights obligations that the states have abided to under different regional and international human rights treaties. Resilience in the human rights language could thus be taken to denote the realisation of rights or the capacity to realise one’s rights through a system that builds on an idea of a responsive state. A responsive state in human rights terms means that individuals can hold a state to account for its failures to abide by its human rights obligations in front of international and regional treaty body organs, human rights courts and national supervisory mechanisms. The responsive state as defined in the vulnerability theory and the state as a responsible human rights actor vis-à-vis individuals may, in other words share more common ground than often thought despite different approaches to the significance of individual rights. One could even argue that the differences may, in the end, be more in the semantics – in the vocabulary of vulnerability – than in the approach to the concept of the responsive state – or the state as a responsible human rights duty-holder – at large. In both approaches, social justice is in essence striven for ‘through the legal creation and maintenance of just social institutions and relationships’ (Fineman, 2019: 342; regarding the vulnerability theory).

From theory to practice: what is expected of the responsive state? The vulnerability theory highlights that vulnerability is not something that arises from or at ‘a moment of harm or injury’, but that it entails a continuum of changing needs and dependencies over the ‘the past, present and future’ (Fineman, 2015a: 626; see also Fineman, 2019: 360−1). In Fineman’s theory, this lifecourse perspective demands that ‘state responsibility with regard to human vulnerability must be consistent across the life-course’ (Fineman, 2017: 144.).24 Yet, while the theory recognises the changing needs of vulnerable individuals and the constant responsibility of the state, it does not go much in detail on what exactly is needed for building resilience, remaining on a rather abstract level of metalevel obligations. This is possibly a choice that derives from the context in which the vulnerability theory is developed, the American society, where a theory to highlight the state as a responsive actor as a counter-reaction to the American individualism probably has its place.

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At the same time, one might argue, when taken from the level of the rationale to the more practical level of implementation, within, for example, some of the north-European welfare states, the argument of the responsive state may call for some more specificity in order to have added operational impact.25 In such contexts, as hinted above, the state is, by and large, (albeit often far from perfectly in practice) already assuming the role as a responsive state by guaranteeing as constitutional and human rights, assets and resources for universal well-being, including universal health coverage, universal free quality primary and secondary education available to all and a myriad of social benefits, coupled with proactive measures of accommodation to make such rights and benefits equally and effectively available to all on a (substantively) equal basis. Fineman criticises human rights law for sometimes being ‘abstract’ (Fineman, 2017: 143).26 This, of course, holds true for many human rights norms. Within human rights law, the often abstract rights that can be found in treaties are, however, brought to an operational level through the detailed authoritative guidance on their implementation provided not only reactively by courts in individual cases but notably also proactively by regional and international treaty body organs in the form of general comments and concluding observations issued as a part of their monitoring role, as well as in the form of recommendations and orders by national human rights monitoring bodies such as the ombudsman system. As a consequence, human rights law includes clearly spelled-out obligations for states for accommodated measures towards the realisation of rights in the different stages and phases of dependency of the human life, from infancy to old age.27 Given the principle of dynamic treaty interpretation,28 such guidance and obligations are adapted to the changing realities and circumstances in time and place. Through such operationalisation, human rights law has also been forced to address in-depth the question of how to approach different degrees and types of human vulnerability and special needs. To understand the similarities and the differences between the approaches to vulnerability within human rights law and in Fineman’s theory, we therefore need to look more deeply into the question of how the two theories approach the question of particularity.

Obligations owed to persons with disabilities: vulnerability as a trigger for differentiated state action Both the vulnerability theory and the human rights project build on the idea of universality. We are all equal in dignity and universal rights, postulates the human rights project.29 We are all equally and universally vulnerable, suggests the vulnerability theory (for example, Fineman, 2017: 142). What both interlinks and differentiates the two schools of thought is, however, how they approach differentiation within universality and how this affects the measures that states are expected to take to ensure the well-being and dignity of human beings.

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Within the vulnerability theory, the approach to universality is unconditional. For Fineman, vulnerability presents itself as universal and she rejects the idea that some people can be ‘considered more or less vulnerable’ or ‘differently or uniquely vulnerable’ (For example, Fineman, 2017: 142.).30 Instead, as described above, the theory focuses on how institutions and different institutional arrangements can affect and contribute to levels of resilience, to mitigate the inherent vulnerability that all individuals share. As Fineman states, vulnerability approach is not centered on specific individuals or groups [ … ] Rather, addressing human vulnerability calls into focus what we share as human beings, what we should expect of the laws and the underlying social structures, and relationships that organize society and affect the lives of everyone within society. (Fineman, 2019: 342) In this way, the theory is based on a post-identity argument that distances itself from ‘a typical individualized rights-based argument organized by the concept of impermissible discrimination based on identity categories such as sex, race, or ethnicity’ (Fineman, 2014: 311). In the context of human rights, on the other hand, vulnerability is often viewed as something particular, or as a continuum where people can be more or less or particularly vulnerable. While universality forms the underlying basis also for the human rights thought, the project includes, as we have seen above, a set of mechanisms to particularise human rights protection. Such mechanisms recognise the need to address the specific measures that are needed for individuals to be able to have their rights realised on an effectively equal basis with others. The special protection regimes and the concept of vulnerability enhance and specify the scope and content of existing obligations to that end. In this way, the particularisation mechanisms can be seen as an element of – or indeed, a precondition for – the universality of social justice. They work as ‘an extraordinary safety mechanism in cases where “regular” protection is not enough to ensure the effective realization of rights’ (Heikkilä and MustaniemiLaakso, 2019: 20), allowing – and obligating – decision makers and judges to ‘show particular vigilance’ when adopting measures and assessing possible violations to ensure that the human rights are ensured effectively for all.31 To address such special consideration needs, and gaps in the law, special human rights instruments, such as the CRPD, can contain both ‘separate restatements of how rights apply to’ the particular groups, but also ‘different versions of the same rights, or possibly even slightly different rights’ (Mégret, 2008: 497).32 More generally, O’Cinneide has argued that: ‘the Convention is [ … ] notable for how it articulates and gives effect to a distinctive vision of the rights of the individual within society’ (O’Cinneide 2009: 163−4). It, for example, contains a set of provisions on protection against violence emphasising that ‘there is a situation of greater vulnerability or risk for persons with disability’.33

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Also the ECtHR’s jurisprudence indicates that the special consideration functions on a sliding scale basis, with ‘extreme’ or ‘particular’ vulnerability giving rise to enhanced obligations.34 While it is generally asserted that a finding of vulnerability does not create new human rights (e.g. Brandl and Czech, 2015: 253), vulnerability functions as a tool to interpret the existing rights in a way that provides the vulnerable individuals protection not only in books but also in practice. Some authors have even submitted that vulnerability could function as a guiding principle when prioritising scarce resources making it possible for states to ‘give preference to those whose needs they consider most pressing’ (Peroni and Timmer, 2013: 1084; see also Timmer, 2013: 163). In other words, the universality of rights translates into differentiated obligations to respond to the different grades and types of vulnerable situations that individuals may find themselves in. In many cases where the ECtHR has made a finding of particular vulnerability, this has had an effect on the outcome of the case (see, however, O’Boyle, 2015: 9). The Court has, for example, often found that there is a need to attach ‘special consideration’ or to give ‘special protection’ to those identified as vulnerable. To illustrate, in Fernandes de Oliviera v Portugal the Court held that: Where the authorities decide to place and keep in detention a person suffering from [sic] a mental illness, they should demonstrate special care in guaranteeing such conditions as correspond to the person’s special needs resulting from his or her disability.35 Special measures may thus be necessary for the benefit of members of a vulnerable group to ensure equal access to particular rights.36 When adopting policies and legislation, states must also pay particular attention to vulnerability, as it may also affect a state’s leeway of action (for discussion, see Peroni and Timmer, 2013: 1075−82). As noted in, for example, Alajos Kiss v Hungary concerning the denying of voting rights for persons with mental disabilities: if a restriction on fundamental rights applies to a particularly vulnerable group in society, who have suffered considerable discrimination in the past [ … ] then the State’s margin of appreciation is substantially narrower and it must have very weighty reasons for the restrictions in question.37 Similarly, in Béláné Nagy v Hungary, the vulnerability finding had effects on the proportionality evaluation to the effect that the State could not change its system of disability-related social-security benefits without considering the effects this had on the vulnerable group of disabled persons.38 The ‘universal’ does not come without ’the particular’ In human rights, a finding of vulnerability carries, in other words, legal significance and may enhance or specify the obligations on the part of the

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state to address the special consideration needs of the differently vulnerable individuals. This has led some to argue that vulnerable persons are ‘entitled to more favorable treatment than others’ (Bossuyt, 2016: 730). This is, of course, partly true, but perhaps it would be more correct to say that vulnerable individuals are entitled to the same protection as everyone else? The measures that are needed to attain that level of protection may just differ from one person to another. Here lies also the main difference, we argue, between the formal and substantive conceptions of equality, as will be explained more in detail below. One of the most eloquent examples of the particularised protection needs is inclusive education. Universal access to primary education was included as one of the goals of the Millennium Development Goals (MDGs) (Goal 2, UNGA, 2010). Yet, during and past the time of the MDGs, children and persons with disabilities were largely left behind, and the goal of universal primary education did not become a reality for children with disabilities. Millions of children with disabilities who were not in schools were identified (Groce and Trani, 2009: 1800). This was due to the fact that even when children with disabilities were physically integrated in schools, the schooling was not inclusive as such. Various particular measures were lacking to ensure the accessibility, adaptability, affordability and availability of the education. To attain these so-called four As of the right to education, measures such as accessible environment, assistive devices and/or support for children with physical disabilities, and sign language-based learning and communication possibilities for deaf children may be necessary, among other things (General Comment 4, 2016). Children with visual disabilities may need text enlargement devices, while children with intellectual disabilities may need easy-read materials and/or personalised assistance. Such measures for universal design of the lived-in infrastructures for all are a crucial strategy for an inclusive society and require attention to specific needs. These measures also form a core of the human rights-based approach to inclusive education (ibid.). The right to education is stipulated as a universal right for all children in several widely ratified global human rights instruments and the core of this right, access to public educational institutions and programmes on an effectively and de facto non-discriminatory basis constitutes a right that states are to take all efforts to realise, even in situations of considerable difficulty.39 Where such specific measures are not taken, and individuals are treated the same, as formally equal to each other, persons with disabilities experience de facto discrimination of their rights, as the experience presented below illustrates: One day, my housemate in Uganda came home very exhausted. She uses a crutch for walking. She said she could not have lunch in her university because the classroom was located on the second floor and there was no elevator. It was difficult and took her a long time to get to the second floor for the lecture, which continued after the lunch break for 30

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M. Heikkilä, H. Katsui and M. Mustaniemi-Laakso minutes. With only a 30-minute break, she did not have time to go down and find a restaurant, eat, and make it back up to the second floor. So she decided not to eat lunch. (Katsui, 2009: 141−2)

When taken from the inter-personal to a societal level, this personal experience highlights the element of particularisation that is required for rights protection to be effective and universal in the sense that such protection is effectively available to everyone. Such particularisation may be done at a universal level through the universal design of ‘products, environments, programmes and services’, to make them usable by all people, regardless of whether they have a disability or not.40 When diverse needs of individuals are taken into account from the onset of the conference and lecture organisation, inclusiveness is in most cases relatively unproblematic to arrange (Guzmán et al., 2016: 20). In the example cited above, the event could simply have been organised on the first (ground) floor or in another building to be accessible for all including those with physical disabilities. At the societal level, such accommodation may require special consideration of different special needs, for example, when building, renovating and assessing the accessibility of educational environments (General Comment 4, 2016). On the other hand, it is essential to note that individual needs are diverse and cannot be accommodated in one solution. Particularisation may, hence, be necessary also at an individual level. For instance, some prefer dim light due to their impairment, while others a bright one. Persons with disabilities without any intellectual disabilities might prefer self-determination, while persons with profound intellectual and multiple disabilities mostly and necessarily rely on proxies for making decisions on their behalf (Nieuwenhuijse et al., 2019: 261 −71). For blind persons the existence of some threshold or different materials may be important in order to distinguish different places. Pedestrian roads can be distinguished from roads for cars by a small threshold for them to safely remain on the side of the pedestrian roads. Many wheelchair users, on the other hand, prefer not to have any threshold at all, not even a small one, to ease their mobility. Moreover, even where a suitable solution may be found to accommodate the needs of both wheelchair users and blind persons, the weather conditions during a particular day, such as snow, may change their personal needs altogether under the particular circumstances. Likewise, while having exactly the same impairments, a subjective right, such as the transportation service of a certain number of hours per month for persons with severe disabilities, is enough for some and insufficient for others due to personal differences (Adressit, 2014). These are just some examples among many of heterogeneity of personal needs of persons with disabilities vis-à-vis possible solutions. Where individual interests collide, universal accessibility and social justice cannot be solved by one approach for all. This reality brings in particularisation at an individual level and obliges duty-bearers to provide reasonable accommodation, via, as formulated throughout and in particular in Article

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2 of the CRPD, ‘means necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case’. Such a human rights-based approach to disability pays attention to both collective and individual vulnerabilities of persons with disabilities. Inclusiveness may, in other words, require ensuring the protection of rights beyond the universal design. While obligations linked to ensuring the universal design of environments, products and programmes so that they are usable by all people operates ex ante, that is, proactively, the obligation of reasonable accommodation is an ex nunc duty. This means that ‘accessibility must be built into systems and processes without regard to the need of a particular person with a disability, for example, to have access to a building, a service or a product, on an equal basis with others’ (General Comment 6, 2018: para. 24(a)). The social model of disability has been criticised for failing to sufficiently take into account various individual differences including physical and psychological conditions (Shakespeare, 2017: 20−1). The same comment, one could argue, may at least partly be relevant for the vulnerability theory, which has a strong focus on the universality of vulnerability. Some elements of particularisation – albeit in a less outspoken way – figure, however, also in connection to the vulnerability theory. Such particularisation takes place in the form of particularisation of duties, not of vulnerability as such, unlike in human rights. This is visible, for example, in how Fineman approaches differences between individuals resulting from societal structures. Addressing such difference is, according to her, vital to underline the role of the responsive state in ensuring effective equality of opportunity and equal access to the resource-generating institutions for all irrespective of their individual characteristics (Fineman, 2015a: 612–13). The vulnerability theory acknowledges hence that people experience vulnerability differently and that people are differently resilient to their vulnerability, which gives rise to differentiated obligations on the part of the responsive state. One may even go as far as argue that the different levels of resilience in the theory may actually conceptually correspond, at any rate to a certain degree, to the different levels of vulnerability in human rights giving rise to different obligations. Where the approaches differ, however, as noted above, is in the level of particularity in terms of the measures that are expected of the responsive state with regard to the operationalisation (similarly Kohn, 2014: 11, 13.). In human rights, such particular guidance is provided, for example, through the implementation, monitoring and coordination mechanisms stipulated in Article 33 of the CRPD. Interestingly, however, while the vulnerability theory at large rejects the group- or identity-based approach to vulnerability, it seems that it is open to somewhat of a more targeted approach when it comes to the operationalisation of the theory’s tenets, for example, with regard to the elderly (Kohn, 2014: 11; see also Fineman, 2012: 84).

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Concluding remarks The personal story quoted above of the person with disability facing hurdles in accessibility in an educational environment is not exceptional and it vividly informs us of the obligations states and other duty-holders have in relation to the particular needs of individuals. A principal concern arising from such experiences is the attitude of those without a disability towards their peers with disabilities, leaving them behind, as if the problem was to be solved by the persons with disabilities alone. The peers and stakeholders at the event referred to perhaps did not mean to directly discriminate on the basis of disability. Formally equal treatment without paying careful attention to particularities, however, was the problem. Three points arise from this example and from the above discussion, with a linkage to the particularity–universality paradigm that forms the focus of this chapter. All three of them relate, in essence, to how the notion of vulnerability can function both to empower and to disempower persons with disabilities. The first point has to do with how the understanding of vulnerability as universal as opposed to particular affects power relations within societies. As outlined above, human rights law contains obligations to make ‘products, environments, programmes and services’ usable by all people, regardless of whether they have a disability or not.41 Yet, the practical implementation of rights is still often insufficient, something that affects the way persons with disabilities can access their rights in practice, even where a relatively solid legal framework is in place ensuring equal rights of persons with disabilities. This is often due to the fact that personalisation of problems faced by persons with disabilities is still widely practised and remains deeply rooted in the mind-set of persons without a disability, hence continuing to sustain the predominant tradition of the medical model of disability. The widespread mentality of society is also often internalised by persons with disabilities, which further reinforces the normalisation of exclusion of persons with disabilities (Katsui, 2005: 84−91). This is a concern that is also raised in the recent General Comment to the CRPD on equality, regretting that the persisting charity/medical models refrain persons with disabilities from being seen as ‘full subjects of rights and as rights holders’ (General Comment 6, 2018: para. 2). Fineman’s theory on universal vulnerability holds great potential in addressing this kind of attitudinal barriers towards vulnerability and persons with disabilities. When we acknowledge that we are all universally and inherently vulnerable, and that we all need special protection in different phases of our lives, the stigma of vulnerability is likely to diminish. Through its markedly siloed understanding of vulnerability, defining certain groups of individuals as vulnerable, rights-based approaches have been criticised for failing to sufficiently recognise such lacking structural transformation needed for the empowerment of persons with disabilities (see, for example, Katsui, 2012; Katsui et al., 2016: 187−98.). In this light, the vulnerability theory is important in further highlighting the significance of a structural approach to

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vulnerability, an approach that starts off not with the characteristics of an individual but with the structures, power relations and lived-in-environments in order to identify and to address discriminatory elements in them (for example, Fineman, 2019: 367–8). While the CRPD takes an important step forward in addressing power relations within societies through its focus not only on state–individual but also on inter-personal relationships,42 this development within human rights law overall is, however, embryonic. One of the vulnerability theory’s strengths is therefore, undoubtedly, its stronger focus on such relationships. The second point that arises from the article relates to the operationalisation of the idea of universal vulnerability. While Fineman’s vulnerability theory makes a strong case for a responsive state, it is not very outspoken as it comes to the specific measures the state should take to that end. This is probably partly explained by the fact that for Fineman, the focus lies in the ‘human’, not the ‘rights’ part of the law (Fineman, 2019: 13). In light of this, the theory stresses the need to re-conceptualise the vulnerable human and to more generally change our perspective on the role of the state. Within human rights law, on the other hand, the need for a responsive state is taken for granted, and the emphasis is more on the realisation of such a state. In this context, the individual rights are central as they function as ‘watchdogs’ for the responsive state or, in human rights terms, the responsible state. The oftenabstract human rights found in treaties have through different forms of treaty body practice been developed into more concrete state obligations to realise the various human rights, particularising the obligations for the reasonable accommodation where needed. Perhaps, in other words, it is exactly here where the most fundamental difference in the approach towards the responsive state between the human rights school and the vulnerability theory lies: in the level of specificity and the particularity of the measures that are expected of the responsive state. In this article, it was suggested that such particularity is a key element in the operationalisation of an effectively universal approach to vulnerability and rights protection. Third, the two schools appear to differ in their approach to individual agency. In the vulnerability theory, the emphasis is, as noted above, markedly on the societal power and care relationships, which at the same time, seems to a certain degree to overshadow the significance attached to the agency of the vulnerable individuals and the need to empower them. According to the vulnerability theory, ‘recognition of vulnerability does NOT reflect or assert the absence or impossibility of agency’ (Fineman, 2015b). Yet, where persons with disabilities primarily are addressed through a caretaker–care receiver paradigm (cf. Fineman, 2017: 139), the voices of the persons with disabilities are typically not put in the limelight. Understandably, this difference probably is simply a question of focus but is worth pointing out given the importance of the issue. Within human rights law the question of agency of all individuals has become vital and recognising persons with disabilities as agents of their own rights is seen as crucial (for example, Quinn, 2009: 90). The CRPD also

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opens up alternative ways of conceptualising agency, given that persons with disabilities are highly heterogeneous and their vulnerabilities are diverse. Some persons with disabilities embrace the expected role of active, independent subjects, while for others, such as for persons with profound intellectual and multiple disabilities, the realisation of agency, or co-agency with proxies, presupposes careful measures and thorough understanding of their needs by the responsive states and responsive humans alike. Such differentiation builds, again, on the idea of particularised protection needed for substantive equality to be realised. In sum, there are many similarities between the vulnerability theory and the human rights approach to vulnerability, but also some significant differences. Both approaches acknowledge the duty of the state to respond to the universally shared needs of the individual, although the vocabulary to express such needs differs between the two projects. Both of them also recognise the importance of the societal structures in addressing human vulnerability and ensuring social justice. Based on the above analysis of vulnerabilities of persons with disabilities and the comparative analysis of the vulnerability theory and the human rights project, this chapter argues that both universal and particular obligations of responsive states are needed as a way of materialising substantive equality for persons with disabilities as vulnerable legal subjects. Such obligations cannot be codified in full detail, but the intrinsic essence of rights requires each right to be interpreted in context and with regard to the particular individual vulnerabilities and resilience of each person. In operationalising the obligations arising from such rights, the human rights project and the vulnerability theory complement and reinforce each other in terms of specifying the rationale and the detailed benchmarks for state action.

Notes 1 This article manuscript was accepted to the International Journal of Human Rights, and was published in 2020. Heikkilä, M., Katsui, H., and MustaniemiLaakso, M. (2020). Disability and vulnerability: a human rights reading of the responsive state. The International Journal of Human Rights. https://doi.org/ 10.1080/13642987.2020.1715948 2 ‘Within the heart of human rights there lies a tension [ … ]: the tension between homogenization on the one hand and respect for pluralism and group difference on the other, between universalism and particularism’. 3 Gourevitch argues that there has been a move away from a self-willing moral agent as the foundation of rights to a ‘needy individual whose vital interests need protection’. 4 See, for example, ECHR Factsheet, n.d. The limits of the case law have, however, been emphasised by, for example, O’Cinneide, 2009: 180. 5 There are also many soft law instruments that are group-specific. Regarding persons with disabilities, see, for example, Declaration, 1975; Commission, 1998. 6 Other examples are: Convention on the Elimination of All Forms of Discrimination against Women (1979); Convention on the Rights of the Child (1989); International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families (1990).

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7 Mégret, on his part, speaks of a ‘pluralization trend’, in which specific groups are recognised as ‘worthy of a specific human rights protection (2008: 495). 8 Chapman v. the United Kingdom App. no. 27238/95 (ECtHR, 18 January 2001), para. 96. See also Peroni and Timmer, 2013: 1063. The word ‘vulnerable’ can, however, be found in some other earlier cases, but it was then used in a different context. For example, Dudgeon v. the United Kingdom App. no. 7525/76 (ECtHR, 22 October 1981). 9 For example, Alajos Kiss v. Hungary App. no. 38832/06 (ECtHR, 20 May 2010), para. 42; Zehentner v. Austria App. no. 20082/02 (ECtHR, 16 July 2009), para. 63; Renolde v. France App. no. 5608/05 (ECtHR, 16 October 2008), para. 109; and Fernandes de Oliviera v. Portugal App. no. 78103/14 (ECtHR, 31 January 2019), para. 113. 10 Alajos Kiss v. Hungary App. no. 38832/06 (ECtHR, 20 May 2010), para. 42. 11 Later on, Fineman, however, appears to distinguish her theory from human rights law by emphasising that the ‘vulnerability approach is not centred on [ … ] human [ … ] rights’ (Fineman, 2019: 342). 12 Draft World Programme of Action Concerning Disabled Persons, UN Doc. A/37/ 351/Add. 1, 20 (para. 6). 13 Preamble. The incompatibility of the medical model of disability with the CRPD has been emphasised by the Committee on the Rights of Persons with Disabilities (see General Comment 6, 2018: paras 2, 8−9). 14 Scully refers to this as ‘ontological vulnerability’ of all human life (Scully, 2014: 204−5). 15 For example, Rooman v. Belgium App. no. 18052/11 (ECtHR, 31 January 2019), para. 164 (‘the applicant is a vulnerable individual on account of his health condition and his detention’). When talking of children, it is particularly common to refer to them as vulnerable individuals. For example, in the Popov v. France case, the ECtHR emphasised the ‘child’s extreme vulnerability’ that was ‘related in particular to their age and lack of independence’. Popov v. France App. no.s 39472/07 and 39474/07 (ECtHR, 19 January 2012), para. 91. 16 For example, Kanciał v. Poland App. no. 37023/13 (ECtHR, 23 May 2019), para. 74 (‘all persons under the control of the police or a similar authority, are in a situation of vulnerability’), and Mubilanzila Mayeka and Kaniki Mitunga v. Belgium App. no. 13178/03 (ECtHR, 12 October 2006), para. 55 (‘applicant’s position was characterised by her very young age’ which was one of the factors that put her in ‘an extremely vulnerable situation’). 17 Fineman herself, however, maintains that there is only one type of vulnerability that related to our embodiment. She thus speaks about embodied and embedded differences (Fineman, 2017: 144; see also Fineman, 2015b). A similar point is made by Scully who finds that ‘what have been thought of as special vulnerabilities’ in fact can be seen as ‘particular manifestations of a broad ontological vulnerability to do with being human’ (Scully, 2014: 218). 18 For example, Salman v. Turkey App. no. 21986/93 (ECtHR, 27 June 2000), para. 99; Mehmet Ali Ayhan and Others v. Turkey App. nos 4536/06 and 53282/07 (ECtHR, 4 June 2019), para. 40; Kanciał v. Poland App. no. 37023/13 (ECtHR, 23 May 2019), para. 74; T.W. v. Malta App. no. 25644/94 (ECtHR, 29 April 1999, para. 43. Dependency may be due to both situational factors (for example, detention) and inherent factors (for example, age) (Zimmermann, 2015: 541). 19 Or to quote Fineman: ‘The nature of human vulnerability forms the basis for a claim that the state must be more responsive to that vulnerability’ (2010: 255−6). 20 Human rights law fundamentally entails three different types of obligations for states: to respect, to protect and to fulfil human rights. What these obligations mean is summarised in the following way by the UN Office of the High Commissioner for Human Rights: ‘The obligation to respect means that States must refrain from interfering with or curtailing the enjoyment of human rights. The obligation to protect requires States

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M. Heikkilä, H. Katsui and M. Mustaniemi-Laakso to protect individuals and groups against human rights abuses. The obligation to fulfil means that States must take positive action to facilitate the enjoyment of basic human rights’ (Office of the High Commissioner for Human Rights, n.d.). General Comment 6, 2018: para. 2. For example, Kanter, 2007: 292; Quinn, 2009: 89−90. Palacios and Walls have referred to this legal development as a ‘paradigm shift’ (2006: 122). O’Cinneide has noted that the Convention on the Rights of the Child ‘contains similar positive obligations which establish individual rights in relationships of dependency’ (2009: 167). Fineman is critical how parental rights have obscured the independent state responsibility for the well-being of children, and argues that childhood should not be seen as a period of diminished state responsibility. Cf. Kohn, 2014: 13 (‘Vulnerability theory provides little guidance as to how to prioritize among vulnerable subjects when allocating limited financial resources and political capital. Indeed, it makes such differentiation more problematic by emphasizing the universality of vulnerability’). Fineman is particularly uncomfortable with the human rights focus on liberty and dignity. For Fineman, the trigger for state action is the embodied and embedded vulnerability, which, indeed, can be seen as a more tangible tenet for why we need a responsive state in general. Regarding children, see, for example, the Convention on the Rights of the Child and the various general comments adopted by the Committee on the Rights of the Child. Vienna Convention on the Law of Treaties (1969), art. 31. Universal Declaration of Human Rights (adopted 10 December 1948) UNGA Res 217 A(III) (UDHR) art. 1. Fineman’s thinking appears to have undergone a slight shift in this regard as in some of her earlier writings, particularity was approached differently: ‘While it is important to recognize that vulnerability is [ … ] universal [ … ], it is also necessary to simultaneously recognize that vulnerability must be understood as particular, varied, and unique at the individual level’ (Fineman, 2015a: 618). Cf. V.D. and Others v. Russia App. no. 72931/10 (ECtHR, 9 April 2019), para. 115. When the CRPD was negotiated, an outspoken goal was not to create new ‘disability rights’, but rather to ensure that existing rights are fully implemented in relation to persons with disabilities. See, for example, Palacios and Walls, 2006; Quinn, 2009: 100. Many scholars have, however, noted that the CRPD at the same time has entailed significant changes to existing law. For example, Kayess and French, 2008: 32; Mégret, 2008: 498, 503. Palacios and Walls, 2006: 147. For example, CRPD art. 10, 11, 15−17. Cf. V.D. and Others v. Russia App. no. 72931/10 (ECtHR, 9 April 2019), para. 115. As pointed out by Scully, this requires that one can differentiate ‘normal’ and ‘special’ vulnerability from each other (Scully, 2014: 204). Human rights law can be criticised for not providing clear criteria for how this differentiation should be done. Fernandes de Oliviera v. Portugal App. no. 78103/14 (ECtHR, 31 January 2019), para. 113. For example, Popov v. France App. nos 39472/07 and 39474/07 (ECtHR, 19 January 2012), para. 91. See also Médecins du Monde – International v. France Complaint No 67/2011 (ECSR, 11 September 2012), para. 132. Alajos Kiss v. Hungary App. no. 38832/06 (ECtHR, 20 May 2010), para. 42. Béláné Nagy v. Hungary App. no. 53080/13 (ECtHR, 13 December 2016), paras 121−4. Report of the United Nations High Commissioner for Human Rights (2015) [report on the protection of economic, social and cultural rights in situations of armed conflict, with a specific focus on the rights to health and to education], UN Doc. E/2015/59.

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40 CRPD art. 2. 41 CRPD, art. 2. 42 CRPD, Preamble (‘Realizing that the individual, having duties to other individuals and to the community to which he or she belongs’) and art. 26(1).

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Kohn, Nina A. (2014) Vulnerability Theory and the Role of Government. Yale Journal of Law & Feminism 26(1): 1–27. Mackenzie, Catriona, Rogers, Wendy and Dodds, Susan. (2014) Introduction: What Is Vulnerability, and Why Does It Matter for Moral Theory? In Vulnerability: New Essays in Ethics and Feminist Philosophy, ed. Catriona Mackenzie, Wendy Rogers and Susan Dodds. Oxford: Oxford University Press, 33–59. Mégret, Frédéric. (2008) The Disabilities Convention: Human Rights of Persons with Disabilities or Disability Rights. Human Rights Quarterly 30(2): 494–516. Nieuwenhuijse, Appolonia M., Willems, Dick L., van Goudoever, Johannes B., Echteld, Michael A. and Olsman, Erik. (2019) Quality of Life of Persons with Profound Intellectual and Multiple Disabilities: A Narrative Literature Review of Concepts, Assessment Methods and Assessors. Journal of Intellectual and Developmental Disability 44(3): 261–271. Nifosi-Sutton, Ingrid. (2017) The Protection of Vulnerable Groups under International Human Rights Law. London: Routledge. O’Boyle, Michael. (2015) The Notion of “Vulnerable Groups” in the Case Law of the European Court of Human Rights. Report presented at the Conference on the Constitutional Protection of Vulnerable Groups: A Judicial Dialogue organized 4−5 December, Santiago, Chile. Available at https://www.venice.coe.int/webforms/docum ents/?pdf=CDL-LA(2016)003-e (accessed 23 October 2019). O’Cinneide, Colm. (2009) Extracting Protection for the Rights of Persons with Disabilities from Human Rights Frameworks: Established Limits and New Possibilities. In The UN Convention on the Rights of Persons with Disabilities: European and Scandinavian Perspectives, ed. Oddný Mjöll Arnardóttir and Gerard Quinn. Leiden: Martinus Nijhoff Publishers, 163–198. Office of the High Commissioner for Human Rights. (n.d.) International Human Rights Law. Available at https://www.ohchr.org/en/professionalinterest/pages/interna tionallaw.aspx (23 October 2019). Palacios, Agustina and Walls, Maria. (2006) Changing the Paradigm – The Potential Impact of the United Nations Convention on the Rights of Persons with Disabilities. Irish Yearbook of International Law 1: 121–165. Peroni, Lourdes and Timmer, Alexandra. (2013) Vulnerable Groups: The Promise of an Emerging Concept in European Human Rights Convention Law. International Journal of Constitutional Law 11(4): 1056–1085. Petman, Jarna (2009) The Special Reaching for the Universal: Why a Special Convention for Persons with Disabilities? In United Nations Convention on the Rights of Persons with Disabilities – Multidisciplinary Perspectives, ed. Jukka Kumpuvuori and Martin Scheinin. Helsinki: VIKE, 20–33. Quinn, Gerard. (2009) A Short Guide to the United Nations Convention on the Rights of Persons with Disabilities. European Yearbook of Disability Law 1: 89–114. Report (2007) Report of the Special Rapporteur on the Right to Education (Vernor Munoz), The Right to Education of Persons with Disabilities. UN Doc. A/HRC/4/ 29, 19 February. Scully, Jackie Leach. (2014) Disability and Vulnerability: On Bodies, Dependence, and Power. In Vulnerability: New Essays in Ethics and Feminist Philosophy, ed. Catriona Mackenzie, Wendy Rogers and Susan Dodds. Oxford: Oxford University Press, 204–221. Shakespeare, Tom. (2017) Disability: The Basics. London: Routledge. Timmer, Alexandra. (2013) A Quiet Revolution: Vulnerability in the European Court of Human Rights. In Vulnerability: Reflections on a New Ethical Foundation for

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Law and Politics, ed. Martha Albertson Fineman and Anna Grear. Farnham: Ashgate, 147–170. UNGA. (1975) Declaration on the Rights of Disabled Persons (adopted 9 December, UN Doc. UNGA Res 3447 (XXX)). UNGA. (1982) World Programme of Action Concerning Disabled Persons (3 December). UN Doc. A/RES/37/52. UNGA. (2010) Resolution Adopted by the General Assembly on 22 September 2010 (19 October). UN Doc. A/RES/65/1. Zimmermann, Nesa. (2015) Legislating for the Vulnerable? Special Duties under the European Convention on Human Rights. Swiss Review of International and European Law 25: 539–562.

5

The global disability rights realization in Ethiopia Inclusive education of children with disabilities Hisayo Katsui

Introduction Universal primary and secondary education have been on the global political agenda in our recent history. The UN Convention on the Rights of the Child (1989), the World Declaration on Education for All (1990), the UN Standard Rules on Equalization of Opportunities for Persons with Disabilities (1993), and the Salamanca Declaration and Framework for Action (1994) have all adhered to inclusive education of children and persons with disabilities. The UN Committee on the Rights of Persons with Disabilities, however, came up with its general comments on inclusive education, pertaining to Article 24 of the Convention on the Rights of Persons with Disabilities, due to its great concern that “profound challenges persist” (2016: 2). It continues, “Many millions of persons with disabilities continue to be denied a right to education, and for many more, education is available only in settings where they are isolated from their peers and receive an inferior quality of provision” (Committee of the Rights of Persons with Disabilities, 2016) despite globally set Millennium Development Goals (MDGs) (Goal 2: Achieve Universal Primary Education) and Sustainable Development Goals (SDGs) (Goal 4: Ensure inclusive and equitable quality education and lifelong learning opportunities for all). While it was celebrated that 91% of children in the developing world were enrolled at primary school by the targeted 2015, it left 57 million children of primary school age out of school (Global Partnership for Education, 2015). When it comes to children with disabilities, out of school, dropped out and limited attendance were all much higher for children with disabilities compared with peers without a disability in 15 low- and middle-income countries that were studied (Mizunoya et al., 2016). The report in fact argues that traditional education policies that increase general attendance do little to benefit children with disabilities and that little is done to promote secondary education of children with disabilities (ibid.: 36). This phenomenon has something to do with the premature understanding of inclusive education. The Committee of the Rights of Persons with Disabilities explicates and defines,

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Hisayo Katsui Inclusion involves a process of systemic reform embodying changes and modifications in content, teaching methods, approaches, structures and strategies in education to overcome barriers with a vision serving to provide all students of the relevant age range with an equitable and participatory learning experience and environment that best corresponds to their requirements and preferences. Placing students with disabilities within mainstream classes without accompanying structural changes to, for example, organisation, curriculum and teaching and learning strategies, does not constitute inclusion. Furthermore, integration does not automatically guarantee the transition from segregation to inclusion. (Committee of the Rights of Persons with Disabilities, 2016: 4)

The Committee clarifies the differences between exclusion, segregation, integration and inclusion. Very often integration is misunderstood as inclusion by physically placing children with disabilities in mainstream schools and by leaving them to adjust to the standardized requirements for such institutions. In some countries, integration of children with disabilities is even used as an austerity means (Veck, 2014), while they experience cost-benefit trade-off for inclusion (Timberlake, 2017). The denial of reasonable accommodation constitutes discrimination and the duty to provide reasonable accommodation is immediately applicable and not subject to progressive realization (Timberlake, 2017: 10). Yet inclusive education has not been achieved in many countries, even when major development in the net enrolment rate at the primary level has taken place during and beyond the MDGs. Ethiopia is not an exception. The net enrolment rate at the primary level including both formal and informal education has reached 99.9% (MoE, 2017: 32). The MDGs and SDGs have been taken seriously by both national and international efforts in the education sector. However, the same rate for children with disabilities today is still 7.8% (MoE, 2017: 84–85). Some social fabrics behind these statistics are elaborated below.

Methodology Using education as a case, the realization of disability rights has been analysed through education policy and programme documents and reports and empirical interview data collected in Ethiopia. The existing situation is highlighted with lived experiences of persons with disabilities and comments by organizations of persons with disabilities (OPDs), education professionals, and government officials who were interviewed between August and October 2013 in Ethiopia. Fifty people were interviewed (Katsui et al., 2014), and the majority of the interviews were conducted with or by an Ethiopian research assistant with a disability. Voluntary participation, informed consent, privacy and anonymity were discussed and secured for the research participants.

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History of special education In the societies of the Global North, the history of attitude against persons with disabilities is observed in various historical documents including the Bible. Vehmas (2005: 21–80) conducted a thorough historical study and describes historical development of disability from the time of the old and new testaments, through to today, and summarized that “the history of disability in the western world is a history of rejection, discrimination and oppression, manifested differently according to the material and cultural factors of each era and place” (free translation of the author from Finnish to English) (Vehmas, 2005: 75). Because histories are not singular, depending on whose perspectives they are written and experienced, and because historical writings tended to be written by those who were literate and thus powerful, the following brief historical development is not as simple as it is presented. This is because diverse perspectives, such as the gender perspective, is largely missing in many historical writings (Lister, 2012), let alone the disability perspective (Winzer, 1993: 4). Due to the paucity of information, it is difficult for us to assess the scope of the problem around persons with disabilities, and even less concerning persons with disabilities of different kinds (Winzer, 1993: 11). Based mainly on studies by Vehmas (2005) and Winzer (1993), this part briefly summarizes some of the identified historical, and yet patchy, developments in society that inform us of possible historical fabrics that have an impact on the education system of today. In the Middle Ages, supernatural causes, such as evil spirits, were often attached to disabilities. This led to the treatment of disability via spirituality, and in the worst case, in the form of witchcraft. At the same time, based on Christianity, caring about persons with disabilities was natural and considered to be a virtue. Charity was gradually developed in which persons with disabilities became beggars and objects of charity. Institutions for poor people as well as for persons with disabilities started to develop. During the period of Ancient Greece and Rome, medical doctors and philosophers started to take more power in society. There are mixed records of both hugely cruel treatments and also of care and affection towards persons with disabilities based on God’s love. Around 1400–1500, biological and physiological explanations to impaired body started to be formulated. Around 1500–1600, academics and lawyers started to define disabilities, especially intellectual disability (as “idiot”) and mental disability (as “crazy”): the former as a permanent condition. Supernatural belief was still strong in society along with new ways of understanding disability. Martin Luther saw persons with intellectual disabilities as children, in whom healthy persons had been replaced by an evil spirit. He further mentioned that they could be thrown into a river to drown. In 1578, the first authenticated school for handicapped persons were established in Spain (Winzer, 1993: 6). Around 1600–1700, science started to combat prejudice and stereotypes, while many people still treated persons with disabilities cruelly. In 1620, Jean Pablo Bonet wrote “the first book on

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special education” (Winzer, 1993: 7). In the 1700s, Jean-Jacques Rousseau wrote about children’s education: he did not believe that education was necessary for children with intellectual disabilities, “who are not useful”. “European pioneers” started attempting to educate persons with disabilities at around this time (Winzer, 1993: 6). It was not until the eighteenth-century Enlightenment that Europe turned to the education and training of persons with disabilities (Winzer, 1993: 39–41). By the end of the eighteenth century, special education as a form of charity became recognized as a branch of education (Winzer, 1993: 5). These developments, including Rousseau’s thinking, were strongly reflected in the special education system development since 1800s, Vehmas argues (2005: 52). By the mid-1800s, states started to fund these special schools separately for groups of children with different impairments such as easily observable visual, hearing, physical and intellectual disabilities (Vehmas, 2005: 63). These schools increasingly started to train children with disabilities in certain occupations for them to grow into competent citizens (Vehmas, 2005: 64). The industrial revolution had an impact first on many persons with disabilities in the Global North due to institutionalization and medicalization. Hitherto, the predominant agricultural rural lifestyle, in which persons with disabilities also played a role, shifted to wage-based urban life style. This started to force people with and without disabilities to fit into average bodies and further into assumed normality with good capacity and physical strength. In this process, abnormality of persons with disabilities was even more manifested than ever before, exclusion and segregation were gradually normalized, and made the formation of citizenship problematic for persons with disabilities (Abberley, 1999: 11). At the same time, medical science developed extensively at around this time, that consequently medicalized persons with disabilities to the extent that they became the target of eugenics. What it is called “social Darwinism” expanded quickly across the Global North. This eugenic policy was paramount in the Nazi regime’s massive eugenic practice including that of children and persons with disabilities. Subsequently and finally, disability has slowly entered the human rights discourse after World War II, less than eight decades ago. During the 1960s and 1970s, disability movements were simultaneously established in various parts of the world both in the Global North and South (Katsui, 2005: 12). As was elaborated in this part, there are several nuances to these historical developments in our latest history, especially when they were written by powerful people of then society in the Global North. Today, histories have been increasingly written by children and persons with disabilities themselves from both the Global North and South or based on their experiences, which gives a much more profound account of disabilities in different contexts. This is one of the fruits of the disability movement. The globalization of the disability movement has also led to the UN Convention on the Rights of Persons with Disabilities (2006). Inclusive education has become a global goal of countries of the Global North and South, especially when the Convention was signed and/or ratified.

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The inclusion efforts of the affluent Western democracies, where wellresourced segregated forms of special education are being merged with equally well resourced regular education, seem to be quite different from those of many economically poorer countries where special education has never been fully developed and where regular education is desperately lacking in resources. (Artiles and Dyson, 2005: 37) Therefore, context-specificity and cultural relativism are called for when localizing inclusive education into practice. The next part elaborates the case of Ethiopia to understand how different approaches intersect and impact on the lives of children and persons with disabilities through inclusive education discourse.

Access to education for children with disabilities in Ethiopian statistics In the Global South, most children and youth with disabilities are excluded from education although exact data are not available for all countries (UN, 2011). Ethiopia is among those sub-Saharan African countries in which over one million children are likely to be out of school (UNESCO, 2014). The Ethiopian government has made investments in education and its public spending on education is one of the highest among countries in the Global South. In 2010–2011, Ethiopia spent 4.6% of its gross domestic product (GPD) on education, and in 2011–2012, it increased to 5.2% (World Bank, 2013: 10). As a result, the net enrolment rate (NER) in primary education (grades 1–4) increased from 69.9% in 2004–2005 to 98.2% in 2012–2013 for boys, and from 65.1% to 92.8% for girls (MoE, 2013a) and further to 99.9% in 2016–2017 (MoE, 2017: 32). The Annual Abstract of the Ministry of Education, however, critically reflects on the almost 100% rate and points out some ambiguities in the statistics. First, the statistics include pupils enrolled in informal education or what the government calls an “Alternative Basic Education” of the third sector. Second, there is possible double counting when pupils move from one region to another and projection of outdated statistics. Some regions even have a ratio exceeding 100% ratio (e.g. 113.8% in the Gambella region) (MoE, 2017: 32). When it comes to the NER of 1–4th grade, the national statistics also show 112.9%, while that of 5–8th grade 59.7% (MoE, 2017: 33). Third, this achievement of increased enrolment has been overshadowed by low-quality education and high dropout rates (MoE, 2013b), which are of particular relevance for children with disabilities in the Global South (Bines and Lei, 2011; Jennings, 2011). When we take a closer look at the NER of children with disabilities, it was 3.2% in 2011–2012 (MoE, 2012) and 7.8% in the latest available statistics (MoE, 2017: 84–85). The most devastating results are to be found in Afar (0.5%) and Somali (0.1%) regions where almost all children with disabilities are out of school (MoE, 2017: 85). When it comes to the secondary education, the national

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NER for pupils with disabilities is 2.3% (MoE, 2017: 87). These imply that the high NER might be misleading. However, it is worth noting that the Ministry of Education in Ethiopia has had disaggregated data on children with disabilities since 2006/07 (MoE, 2012: 8), as it is not self-evident in many countries in the Global South. In sub-Saharan Africa, due to limited access to schools, little is known about how children with disabilities advance and succeed in education (Hunt, 2008; Lehtomäki et al., 2014). More children with disabilities are enrolled in urban primary schools (4.6%) than in rural ones (2.3%) (Education Management Information System, 2012, cited in MoE, 2013b). On average, there are more boys than girls with disabilities in all grades, reflecting the tendency for parents to keep more girls with disabilities at home (Jennings, 2011). Boys with disabilities are much better off. They don’t do any housework. Boys have to go out to study and to school, they have no other option. The family doesn’t expect him to cook or clean … They have much better possibilities than girls as they can have some income in one way or another. Many have been to school and then get employed. (Ethiopian woman with mobility disability, cited in Katsui and Mojtahedi, 2015: 567) The situation for girls with disabilities, especially in rural areas, is even more difficult, when girls are expected to marry early. The problem is that [the family] takes advantage of you. They say that the food you cook tastes so good, especially when YOU cook it tastes even better … My twin sister got to continue her studies, but because I have a disability, they think I am no use in supporting them financially when they get older. (Ethiopian woman with mobility disability, cited in Katsui and Mojtahedi, 2015: 568) In this context, charity organizations and NGOs are too frequently only actors reaching families with children with disabilities promoting their right to education. Furthermore, some local OPD workers claim that the NER of children with disabilities is overestimated. According to many interviewees, many children with disabilities are still hidden at home without any official registration (Wapling, 2010: 15&38). Especially education professionals suspect that the NER of children with disabilities would be even lower than the official statistics: There are many street children in Addis. But they are not registered. They are not included in the current government statistics. The same goes for children with disabilities. They are also not included in the statistics. That is the reason that the enrolment rate of children in Addis is almost 100%, but this is not true. (Senior education professional)

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Many of children with disabilities are indeed not enrolled at school at all. Even when some are enrolled, quality education for children with disabilities has not been largely realized as most of them are only physically included without reasonable accommodation measures. Thus, many of them cannot attend classes even when enrolled. When interviewed, a public primary school principle confirmed that there are some children with disabilities enrolled in her school, but coming to school is another thing. As for the educational environment, only 1% of the primary education teachers are qualified in special needs education (MoE, 2017: 87). About 61% of schools reported that they do not have secured access to water for children with disabilities (MoE, 2017: 66). These are eloquent examples of integration rather than inclusion. Furthermore, the existing statistical information relies on reports from schools and observations by teachers concerning students with easily identifiable disabilities (MoE, 2012a). The categories used for disaggregating data have been expanded from “blind, physically disabled, deaf, intellectually disabled, and other” in 2012/13 Abstract (MoE, 2013a: 36) to more detailed ones including autism, different combinations of multiple impairments, and severity of impairments in the latest 2016/17 Abstract (MoE, 2017: 81). The statistics may help make children with disabilities become more visible in education system development, while more rigorous efforts are urgently needed to include all children with disabilities in the statistics and eventually also in inclusive education.

Students with disabilities: greater risk of dropping out In Ethiopia, the number of qualified teachers needed for primary education is far beyond the capacity of teacher education institutions; alternative programmes and in-service training to update skills are therefore urgently needed (Abebe and Woldehanna, 2013). In regions where children with disabilities are enrolled in regular schools, teachers report on their need for capacity development, materials and support to enable the learning of these children (Jennings, 2011). Even in special schools for children with disabilities, a lack of educational resources is evident. During the interviews with two girls with visual disabilities, they confirmed that they were not literate in braille though they had completed their primary education in a special school for students with visual disabilities. This is often the case in Ethiopia due to lack of braille materials as well as a lack of teachers’ training in braille (staff member of an organisation of blind persons). Poor-quality education reduces families’ motivation to send their children to school altogether, whether a local public school or special school (Jennings, 2011; UNESCO, 2014). The situation is exacerbated by the fact that teachers have reportedly been required to give passing grades to almost all students to enable them to advance to the next level with a view to reducing dropout rates and increasing the enrolment rates in schools at all levels.

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Hisayo Katsui When I started to teach at the university, I gave ‘failing’ marks to several students. The head of the department came to me and instructed me not to give ‘failing’ marks to any student even when their exam marks are very poor. I can show you this. This is the exam result for this semester. You can see that there are no ‘failing’ grades on this list. I am not allowed to fail students. This seems to be the national policy now. [ … ] That’s why even university graduates are not qualified employees today. (University lecturer in education)

Many observable barriers in physical environments, such as distance between home and school and inaccessible school facilities, are challenging, particularly for children with mobility difficulties and visual disabilities. Water and sanitation are serious problems. According to the latest government report on education in Ethiopia, 34% of primary schools have water facilities accessible to pupils with disabilities (MoE, 2017: 48). The same report informs that 61% of schools are free from open defecation (MoE, 2017: 48). This water and sanitation problem is one of the major contributing factors for school dropout among children with disabilities, especially girls (Jones and Reed, 2005: UNICEF, 2019a). In addition, attitude has been a huge challenge. Children and persons with disabilities are often stigmatised (Goffman, 1963). Even my father differentiates us that I am not of the same value as they [siblings] are because they do and offer him things quickly. My father thinks that I cannot manage to fetch clean water. If I fetch it, it is not clean and does not taste good. So he has never given me the value [that the siblings enjoy]. In this way, he differentiates me from them. (Ethiopian woman with mobility disability, cited in Katsui and Mojtahedi, 2015: 566) Sometimes when I go out with my son [with a disability], people consider us beggars, and just want to throw some coins. It is really upsetting and hurting. (Parent of child with disability in Ethiopia, cited in ACPF, 2014: 31) Two interviewed girls with visual disabilities in rural area who completed primary school with good grades and proudly continued their studies talked about the challenges in advancing their education. At the time of the interviews, they were attending the eleventh grade in a regular secondary school in the same rural area where they attended primary school for children with visual disabilities. Each of the girls received a small monthly allowance provided by a civil society organisation (CSO), which receives funding from abroad. The girls claimed that the allowance was too small to live on because most of the allowance went on the monthly rent of the room they shared. The interview took place in their rented room, which was most likely a storage space of the house next door without any window or water and sanitation

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facilities. They said that as they transitioned from the special primary school to the secondary school, they faced many challenges, including lack of accessible educational means, attitude of teachers and peer pupils, and poverty, among others. No special attention is paid to students like us [students with visual disabilities] in our school. For example, teachers do not know how to teach us. Teachers only write on the blackboard and do not read what is written there. So we are often not learning what others learn in the same classroom. (Sofia, girl with visual disability, 11th grade) I am still afraid of students with no disability. I have no confidence in speaking with them because I was in the special school. It’s difficult to become friends with them. (Aida, girl with visual disability, 11th grade) A study similarly shows that bullying and lack of resources were the most common problems for school enrolment for the 305 children with disabilities in the study in rural Eastern Ethiopia (Geda et al., 2016). 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. (Ethiopian deaf woman, cited in Katsui and Mojtahedi, 2015: 567) We have this problem that when we face a situation, for instance in a school, I know the answer to what the teacher asks. But I would tell the answer to my friend without a disability and she answers instead of me, because others don’t believe that I know the answers. I don’t have the self-confidence, but I know the answer. (Ethiopian woman with mobility disability, cited in Katsui and Mojtahedi, 2015: 568). Poverty also deeply affects the realities of persons with disabilities (Eide and Ingstad, 2013), including participation in education. In a quantitative study in four African countries, findings highlight how the mean size of households with family members with disabilities was bigger because those households required extra hands for support. The study concluded that households with members with disabilities tended to be worse off compared with households without, because they had more mouths to feed (Eide et al., 2011). Therefore, even when children with disabilities manage to access education, the poverty of their families challenges their advancement and survival. The two girls above said that many former classmates with visual disabilities had not continued their studies to the secondary level.

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Hisayo Katsui Many classmates at the primary school are now on the streets begging for money because they were too poor and also not good enough to continue their study. They do not have a place at home (to go back to) because they lived here. (Sofia, girl with visual disability, 11th grade)

Poor families cannot afford to invite their children with disabilities back home, which has left them on the street to survive. Only a limited number of successful ones continue to higher education such as Yetnebersch Nigussie, an award-winning Ethiopian blind disability activist. In an interview, she asserts that life as an Ethiopian girl born in a rural area would have meant early marriage at the age of around 10, as was usually the case of any girl in the village at that time. Many other OPD representatives also expressed that this is a valid scenario for many today. Due to her blindness, a CSO convinced Nigussie’s mother to relocate her to go to a distant special school. She calls her mother, “a change maker” in her life. She claims, Inclusive education is good not only for children with disabilities who have not been given the equal opportunity for education due mainly to negative attitude, but also good for girls who have stayed at home to take care of their siblings with disabilities. There are increasing numbers of highly educated persons with disabilities in Ethiopia today. Yet, high dropout rates of children and youth with disabilities from schools has been an overwhelming reality, even when they were enrolled into schools.

The politics of inclusion The politics of inclusion (and exclusion) can be examined through an analysis of the “hows”’ and “whys” of policy outputs (Sainsbury, 2012: 135), in this case, the actual realization of inclusive education practices for children with disabilities. As elaborated above, inclusive education that the United Nations Committee of the Rights of Persons with Disabilities (2016) laid out has been far from reality not only in Ethiopia but also in many other parts of the world, as the Committee laments. UNICEF (2019b) similarly states, “Disability is the single most serious barrier to education across the globe” and estimates that 50% of children with disabilities worldwide are not at school. A study of 15 low- and middle-income countries similarly concludes that more than 85% of children with disabilities at primary education ages who are out of school have never attended school (Mizunoya et al., 2016: 4). As many children with disabilities are still hidden at home and not included in the statistics, their experiences have not been recorded well (Katsui and Mojtahedi, 2015: 572). Inclusive education is still a clear global problem today after several decades of policy endorsement and international law ratifications.

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In the case of Ethiopia, many parents do not yet know that their children with disabilities have an equal right to education (Jennings, 2011; ACPF, 2014: 32–36), as they have internalised the negative attitude of society. Good-quality education as a right is hardly recognised yet in practice for children with disabilities, even though the overall statistical trend for Ethiopian children’s enrolment rate has been positive and reached almost 100%. Several education professionals claim that increasing the NER of children in general is the priority of the government, while the quality of education is secondary, let alone the right to education of children with disabilities. On the one hand, Yehualawork (2017) concluded in his study that there is a major lack of the principle of inclusion in Ethiopian education policy and related strategies. On the other hand, the elaborations are some eloquent social realities of exclusion, segregation and integration (Committee of the Rights of Persons with Disabilities, 2016: 4) for children with disabilities behind the official statistics. The consequences of this exclusion, segregation and integration are significant: when increasing numbers of children without a disability go to schools, while many children with disabilities continue to be uneducated, inequalities between them are ever deteriorating instead of being alleviated. This adverse effect is fully against not only Goal 2 of the SDGs that has been the central focus of this case study, but against the principle also of the Goal 10, “Reduced inequalities”. Disability disaggregated data collection are stipulated for both Goals 2 (indicator 4.5.1.) and 10 (indicator 10.2.1). Without careful, deliberate and targeting efforts of all duty-bearers and rights-holders, the gap will continue to increase not only for the education sector but for many other sectors as well, which continue to be aggregated into huge inequalities. The time is ticking over for the set timeframe of 2030 for leaving no one behind.

References Abberley, Paul. (1999) The Significance of Work for the Citizenship of Disabled People. Unpublished paper presented at University College Dublin on 15 April 1999. Available at https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/ library/Abberley-sigofwork.pdf (accessed 7 November 2019). Abebe, Workneh and Woldehanna, Tassew. (2013). Teacher training and development in Ethiopia: improving education quality by developing teacher skills, attitudes and work conditions. Young lives working paper. Oxford: University of Oxford. ACPF. (2014) The African Report on Children with Disabilities: Promising Starts and Persisting Challenges. Addis Ababa: African Child Policy Forum. Artiles, Alfredo and Dyson, Alan. (2005) Inclusive Education in the Globalisation Age: The Promise of Comparative Cultural-Historical Analysis. In David Mitchell (ed.) Contextualising Inclusive Education: Evaluating old and new international perspective. London: Routledge, 37–62. Baseline Study (2010) Baseline Study on the Status of Persons with Disabilities and the Influence of the African Decade Pronouncement in Ethiopia. Submitted to the Federal Democratic Republic of Ethiopia Ministry of Labour and Social Affairs (MOLSA). Commissioned by the Secretariat of the African Decade of Persons with Disabilities.

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Bines, Hazel and Lei, Philippa. (2011) Disability and Education: The Longest Road to Inclusion. International Journal of Educational Development 31: 419–424. Committee of the Rights of Persons with Disabilities. (2016) General Comment No.4. Article 24. Right to inclusive education. Available at https://www.right-to-education. org/sites/right-to-education.org/files/resource-attachments/CRPD_General_Comm ent_4_Inclusive_Education_2016_En.pdf (accessed 20 December 2019). Eide, Arne H. and Ingstad, Benedicte. (2013) Disability and Poverty: Reflections on Research Experiences in Africa and Beyond. African Journal of Disability 2(1): 31. doi:10.4102/ajod.v2i1.31. Eide, Arne H., Loeb, Mitch E., Nhiwatiwa, Sekai and Munthali, Alister. (2011) Living Conditions among People with Disabilities in Developing Countries. In Arne H. Eide and Benedicte Ingstad (eds) Disability and Poverty: A Global Challenge. Bristol: Policy Press, 55–70. European Commission. (2010) Study of Disability in EC Development Cooperation. Available at http://ec.europa.eu/europeaid/what/social-protection/documents/223185_ disability_study_en.pdf (accessed 15 October 2013). Geda, B.Berhane, Y.Assefa, N. and Worku A. (2016) School Enrollment among Children with Disability in Rural Eastern Ethiopia: A Community-Based Survey. Communication Disorders, Deaf Studies & Hearing Aids 4(4): 1–5. Global Partnership for Education. (2015) Final Assessment of MDG Impact on Education. Available at https://www.globalpartnership.org/blog/final-assessment-mdg-impa ct-education (accessed 9 March 2020). Goffman, Erving. (1963) Stigma. Harmondsworth: Pelican. Hunt, Frances. (2008) Dropping Out from School: A Cross-Country Review of Literature. CREATE, Pathways to Access No. 16. Consortium for Research on Educational Access, Transitions and Equity, University of Sussex. Available at http://www. create-rpc.org/pdf_documents/PTA16.pdf (accessed 9 January 2020). Jennings, M. (2011). Social Assessment for the Education Sector, Ethiopia. London: Department for International Development, Social Development Direct. Available at http://www.sddirect.org.uk/uploads/pdfs/social-assessment-education-ethiopia.pdf (accessed 1 November 2013). Jones, H. and Reed, B. (2005). Water and Sanitation for Disabled People and Other Vulnerable Groups: Designing Services to Improve Accessibility. Loughborough: Water, Engineering and Development Centre, Loughborough University. Katsui, Hisayo. (2005) Towards Equality ~Creation of the Disability Movement in Central Asia. Helsinki: Helsinki University Press. Katsui, Hisayo and Mojtahedi, Mina. (2015) Intersection of Disability and Gender: Multi-Layered Experiences of Ethiopian Women with Disabilities. Development in Practice 25(4): 563–573. Katsui, H., Ranta, E.M., Yeshanew, S.A., Musila, G.M., Mustaniemi-Laakso, M. and Sarelin, A. (2014) Reducing Inequalities: A Human Rights-Based Approach in Finland’s Development Cooperation with Special Focus on Gender and Disability. Turku: Institute for Human Rights. Kiragu, S., Swartz, C., Chikovore, J., Lukalo, F. and Oduro, G. Y. (2011). Agency, Access, Silence and Ethics: How Young People’s Voices from Africa Can Contribute to Social and Educational Change in Adult-Dominated Societies. In C. Day (ed.) International Handbook of Teacher and School Development. London: Routledge, 254–263. Lehtomäki, E., Tuomi, M.T. and Matonya, M. (2014). Educational research from Tanzania 1998–2008 concerning persons with disabilities: what can we learn?

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International Journal of Educational Research 64: 32–39. Available at http://dx.doi. org/10.1016/j.ijer.2013.10.005. (accessed 20 December 2019). Lister, Ruth. (2012) Citizenship and Gender. In Edwin Amenta, Kate Nash and Alan Scott (eds) Blackwell Companion to Political Sociology. Oxford: Blackwell, 372–382. Mizunoya, Suguru, Mitra, Sofie and Yamazaki, Izumi. (2016) Towards Inclusive Education: The Impact of Disability on School Attendance in Developing Countries. Innocenti Working Paper 2016/03. Florence: UNICEF Office of Research. MoE. (2012) Education Statistics Annual Abstract: 2004 EC. [2011/12 GC.]. Addis Ababa: Ministry of Education. Available at http://www.moe.gov.et/English/Resour ces/Documents/eab04.pdf (accessed 13 December 2013). MoE. (2013a) Education Statistics Annual Abstract: November 2005 EC. [2012/13 GC.]. Addis Ababa: Ministry of Education. Available at http://www.moe.gov.et/ English/Resources/Documents/eab05.pdf (accessed 5 January 2014). MoE. (2013b) Social Assessment of the General Education Quality Improvement Program PHASE 2. MoE. (2017) Education Statistics Annual Abstract: 2009 EC. [2016/17 GC.]. Addis Ababa: Ministry of Education. Available at http://www.moe.gov.et/documents/ 20182/0/Statistics+2009+final+1/ca93f33d-0540-468e-9806-0e6032f8d848?version=1. 0 (accessed 11 November 2019). MoE and UNICEF. (2012) Study on the Situation of Out of School Children (OOSC) in Ethiopia Report. Prepared for the MoE and UNICEF by ATEM Consultancy, Addis Ababa, December 2012. Sainsbury, Diane. (2012) Welfare States and immigrant Rights: The Politics of Inclusion and Exclusion. Oxford: Oxford University Press. Teferra, T. (2005). Disability in Ethiopia: Issues, Insights and Implications, Addis Ababa: Addis Ababa University. Timberlake, Maria T. (2017) Nice, But We Can’t Afford It: Challenging Austerity and Finding Abundance in Inclusive Education. International Journal of Inclusive Education 22(9): 954–968. UN. (2011) Disability and Millennium Development Goals: A Review of the MDGs Process and Strategy for Inclusion of Disability Issues in Millennium Development Goal Efforts. Available at http://www.un.org/disabilities/documents/review_of_disa bility_and_the_mdgs.pdf (accessed 4 February 2014). UNESCO. (2014) Teaching and Learning: Achieving Quality for All. Education for All Global Monitoring Report 2013/14. Available at http://www.unesco.org/new/en/ education/themes/leading-the-international-agenda/efareport/reports/2013 (accessed 30 January 2014). UNICEF. (2019a) WASH. Available at https://www.unicef.org/disabilities/index_65839. html (accessed 6 November 2019). UNICEF. (2019b) Inclusive Education: Every Child Has the Right to Quality Education and Learning. Available at https://www.unicef.org/education/inclusive-educa tion (accessed 6 November 2019). Veck, Wayne. (2014) Disability and Inclusive Education in Times of Austerity. British Journal of Sociology of Education 35(5): 777–799. Vehmas, Simo. (2005) Vammaisuus: Johdatus historiaan, teoriaan ja etiikkaan. Helsinki: Gaudemus. Wapling, L. (2010). Exploratory Mission to Assess the Opportunities for Inclusive Education in Ethiopia. London: Handicap International.

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Winzer, Margret A. (1993) The History of Special Education: From Isolation to Integration. Washington, DC: Gallaudet University Press. World Bank. (2013) International Development Association Project Appraisal Document for a General Education Quality Improvement Program II, 2 September 2013. World Health Organization and World Bank (2011) World Report on Disability. Available at http://www.who.int/disabilities/world_report (accessed 15 December 2013). Yehualawork, Abebe. (2017) Policy Practice Gap in Participation of Students with Disabilities in Ethiopia’s Formal Vocational Education Programme. Jyväskylä, Finland: University of Jyväskylä. Available at https://jyx.jyu.fi/bitstream/handle/ 123456789/53081/978-951-39-6967-7_väitös10032017%20.pdf ?sequence=1&isAl lowed=y (accessed 6 November 2019).

International laws and policies Millennium Development Goals (2000) Salamanca Declaration and Framework for Action (1994) Sustainable Development Goals (2015) UN Convention on the Rights of the Child (1989) UN Convention on the Rights of Persons with Disabilities (2006) UN Standard Rules on Equalization of Opportunities for Persons with Disabilities (1993) World Declaration on Education for All (1990)

6

The global disability rights realization in Finland Deinstitutionalization of persons with intellectual disabilities Hisayo Katsui

Introduction The independent living (IL) movement of persons with disabilities, along with other social movements, started in the struggle of university students during the 1960s in the United States of America (Martinez, 2003) and quickly spread to other countries including Finland. In the IL philosophy, selfrepresentation, equal opportunities and self-determination were central principles, when persons with disabilities still largely lacked agency within the predominant medical approach to disability in society (Oliver, 1996) particularly in the global North. In several parts of the world, persons with disabilities simultaneously started to organize themselves to grow into the global disability movement (Könkkölä and Sjövall, 1993; Katsui, 2005: 12). The disability movement has increased the visibility of persons with disabilities and led to subsequent international events such as the United Nations International Year of Disabled Persons in 1981 (Martinez, 2003) and the World Programme of Action Concerning Disabled People in 1982 (Katsui, 2005). However, these international events were still largely in line with the medical approach to disability, as was exemplified in the definition of impairment, disability and handicap made by the World Health Organization and mentioned within the World Programme of Action (Despouy, 1993). The series of international events made it clear to the disability movement that the predominant medical approach was not what they wanted and further accelerated the movement. For instance, at around the same time, Disabled People’s International (DPI), an international organization of persons with disabilities, was established in 1981. “Nothing about us without us”, the slogan of DPI, has become an important strategy for the movement. The IL philosophy has been a driving force of the global disability movement and has a profound impact on the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The CRPD has an article on Living Independently and Being Included in the Community (Article 19), which stipulates that “States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of

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this right and their full inclusion and participation in the community.” The United Nations Committee of the Rights of Persons with Disabilities presented General Comment Number 5 (Committee of the Rights of Persons with Disabilities, 2017) on this Article 19 and underlines that deinstitutionalization and the transition process from institutional to community-based support are essential components of fulfilling the Article. Today many countries having institutions have been struggling to deconstruct institutions because this change “entails profound shift from environments characterized by routine and an ‘institutional culture’, to support in the community where persons with disabilities exercise choice and control over their lives” (Tuokkola and Katsui, 2018: 2). In Finland, a group of University of Helsinki students with disabilities started a similar disability movement in the 1970s and established a cross-disability organization, the Threshold Association, in 1973. The Association has been closely linked with the global disability movement, as one of the central actors. One of its founders, Kalle Könkkölä, became later a member of parliament in 1983, the global chairperson of Disabled People’s International in 1993, and further politicized issues around disability as human rights. Organizations of persons with disabilities have been deeply engaged with the government of Finland and developed a partnership relationship. In 1986, the National Disability Council (VANE) was established under the auspice of the Ministry of Social Affairs and Health. VANE is an official channel to represent voices of persons with disabilities in law making and decision making of the government of Finland. Today it has changed its name to Advisory Board for the Rights of Persons with Disabilities and become the coordination mechanism of the CRPD (Article 33). The strong Finnish disability movement played a role in building and developing social policy and practice (Ministry for Foreign Affairs of Finland, 2018) that is known as a Nordic welfare model, the aim of which is inclusion and universalism (Hellman, Monni and Alanko, 2017). For instance, the disability movement succeeded in gaining subjective rights and persons with severe disabilities became entitled to personal assistants through an amendment of the Disability Service Law in 2009. Personal assistance is a significant factor for the agency of persons with disabilities (Sihvola, 2014). Similarly, the Sign Language Act was enacted in 2015 to promote sign language users’ opportunities to use their mother tongue. According to the government resolution of 2012, there will be no person with a disability living in an institution by the end of 2020. Until the 1990s, most persons with severe intellectual disabilities lived in institutions (Katsui et al., 2019). In 1995, 3699 persons with disabilities still lived in institutions, while in 2017 the number decreased steadily and was 739 persons (SOTKAnet, 2018). The statistical trend tends to present a promising picture about the deinstitutionalization process in Finland. The ratification of CRPD in 2016 has been accelerating the on-going efforts in municipalities that are the main actor to implement the deinstitutionalization in practice. The action programme 2018–2019 (Ministry of Social Affairs and Health, 2018) identifies areas of priority during these years by

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mentioning responsible duty-bearers, namely responsible Ministries. The action programme refers to independent living as an important goal, reiterates the set timeframe to demolish institutions by the end of 2020, and further presents shortterm goals for promoting independent living for persons with disabilities. In short, political will and commitment as well as legal development at the national level are drivers for independent living for persons with disabilities. In this process, VANE has been playing a significant role in coordinating dialogue among stakeholders’ representatives such as government officials and OPDs. Consequently, Finland is often cited as a good example of a country committed to the discourse on disability (Ministry for Foreign Affairs of Finland, 2018). In this case study, we have taken a closer look at the practice of this process beyond the statistics by listening to experiences of relevant stakeholders and tries to tease out more complicated, evidence-based picture of current Finnish realities around disability rights. The key question to answer in this case study is what are the local experiences of deinstitutionalization, when the global and national policy about independent living is transcended into practice. This case study shows how the self-determination rights of persons with severe intellectual disabilities can be compromised in practice. The complexity has been analysed and theorized based on data collected between 2016 and 2017 at the national and local levels in Finland.

Methodology This case study relies on research on deinstitutionalization and independent living for persons with disabilities in Finland (Tuokkola and Katsui, 2018). The research took place in the framework of a multi-year project of the European Union Agency for Fundamental Rights (EUFRA) between 2014 and 2018 (EUFRA, 2018). The fieldwork took place in Finland between 2016 and 2017. This research used qualitative research methods including personal interviews, narrative interviews, focus group discussion, Delphi (e.g. Hsu and Sandford, 2007), and consultation meetings at the beginning and end of the research process. The data were collected, transcribed word-by-word, and analysed using the thematic content analysis technique. To ensure comparability between the five selected countries, one of which was Finland, a series of guidance frameworks from the EUFRA in terms of overall thematic frameworks and categories was provided and guided the analysis. Table 6.1 shows the number of research participants for each method. Eighty-four people participated in the research process and many of them multiple times. One locality was selected for the series of focus group interviews as well as narrative interviews with persons with intellectual disabilities. Places of consultations, interviews and focus group discussions were carefully selected by accommodating the diverse needs of the participants with disabilities. For narrative interviews with persons with intellectual disabilities, we visited each one of the four once before the interviews to get to know each other better. Subsequently, interviews took place twice to ensure correct

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Table 6.1 List of research methods, participants and their numbers. Research method

Research participants

1.

Consultation

2.

Personal interview

3. 4.

Personal interview Narrative interview

5.

Focus group discussion Focus group discussion Focus group discussion Focus group discussion

Representatives of organizations of persons with disabilities National-level stakeholders and experts* Local-level stakeholders** Persons with intellectual disabilities (twice per person) Persons with intellectual disabilities Local authorities at the locality

6. 7. 8.

9. 10. 11. 12. 13.

Focus group discussion On-line Delphi survey On-line Delphi survey On-line Delphi survey On-line Delphi survey

14. 15.

On-line Delphi survey On-line Delphi survey

16.

On-line Delphi survey

17.

Two-day-national consultation meeting Total

Number of research participants (persons) 5 7 7 4 14 (7+7)*** 11

Family members at the locality

6

Staff members and social workers related to disability services at the locality Community members and neighbours at the locality National-level authorities Local-level authorities Staff of institutions Staff of community-based services Family members**** Representatives of organizations of persons with disabilities Persons with intellectual disabilities Various research participants from above

8

8 8 8 8 8 8 8 1 30 84

**** Parents of adult children with intellectual disabilities are included in this group.

interpretation of their experiences. In these narrative interviews, some of them wanted their instructors to be present with them, and they did so to support their communication. Special attention was paid to ethical issues in the research process. The standardized ethical procedure of the EUFRA was utilized. An information sheet was delivered to participants prior to their engagement in the research. This provided information about the research purpose and nature, their voluntary

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participation, right to withdrawal without penalty, privacy and anonymity. After agreeing on the terms, two copies of an informed consent form was signed: one was given to the participant, while the other copy was archived safely in the locked space at the EUFRA. In addition, reasonable accommodation (CRPD, Article 2) was an important aspect throughout the research as the participants are persons with a range of disabilities. Their accessibility to information as well as physical accessibility were carefully secured. When preliminary findings were ready and a national consultation meeting was held towards the end of the research, easy-read materials were produced to present main findings of the research especially for those research participants with intellectual disabilities. The final case study report, comparative and synthesis report of several EU countries, and other materials to popularize research findings were placed as open access files on the EUFRA website.

Hidden realities behind the statistics The steadily decreasing number of residents with disabilities in institutions disguise the realities. This part focuses firstly on further disaggregated data to understand the deinstitutionalization process better, and secondly on the types of persons with disabilities who still live in institutions. Table 6.2 shows the number of residents disaggregated by their ages and their lengths of living in the institutions. The table shows that the decrease is much higher for the residents aged between 18 and 64 years compared with children and youths with disabilities as well as with people with disabilities over 64. In fact, the decrease has been minimal for children and youths with disabilities for the last two decades. The majority of residents who are still in institutions are long-term residents (N=622 out of 739 in 2017). Table 6.2 The number of persons with intellectual disabilities living in institutions

0–17 yrs Of which long-term 18–64 yrs Of which long-term Over 64 Of which long-term Total Of which long-term

1995

2000

2005

-

208 155

207 133

190 122

194 128

175 114

-

2390 2332

1974 1909

1 588 1 512

1 117 1 054

-

160 157

165 161

156 156

3699 -

2758 2644

2346 2203

1 934 1 790

(Source: Katsui et al., 2019.)

2010

2013

2014

2015

2016

2017

194 138

191 138

173 110

933 875

798 735

648 583

494 444

153 149

133 128

101 96

81 81

72 68

1 464 1 331

1 241 1 117

1 093 962

920 795

739 622

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In Finland, persons with disabilities typically live in the community, with some exceptions. Persons with profound intellectual and multiple disabilities, as well as older persons with intellectual disabilities, are among the groups more likely to live in institutions (Katsui et al., 2019). This is because the deinstitutionalization started with people with mild intellectual disabilities. Those in the institutions typically have intensive medical care needs and/or were born in the 1950s or earlier, having been in institutional care for a long time (Tuokkola and Katsui, 2018: 13). This means that deinstitutionalization in the near future up until 2020 is going to be much more challenging compared with those who have been already relocated. According to many local professionals, the institution has become “a home” for these persons with intellectual disabilities and requiring them to move away from the institution would not necessarily be a humane solution (Tuokkola and Katsui, 2018: 13). They consider this to be an ethical dilemma, when one is imposed on to be relocated from his/her “home”, whereas institutional living is a violation of human rights. Furthermore, there seems not to be a consensus among stakeholders for deinstitutionalization for all at a local level. Some stakeholders are of the opinion that deinstitutionalization does not fit all. At a local level, several staff members who have worked in institutions and also a family member are particularly of this opinion, which is to some extent affected by their conflict of interests as deinstitutionalization implies the threat of unemployment for the institution staff members or more care responsibility for their families. A staff member of a disability service provider also believes that institutions are better for those with intensive care and medical needs: Everything was so easy in the institution. Everything worked. There was a medical doctor, therapists, and everything worked so well there. (Employee of a community-based service. Cited in Tuokkola and Katsui, 2018: 17) Therefore, at the national level, there is seemingly consensus for deinstitutionalization for all which on one hand has been well-observed in the government resolutions and the ratification of the Convention. The personal interviews and consultations confirmed this consensus at the national level among diverse actors including government officials, academics and representatives of organizations of persons with disabilities. On the other hand, consensus has not been reached by local actors in the selected locality, as was presented above. When municipalities are responsible for implementing deinstitutionalization in practice, this unreached consensus at the local level does have implications that have an impact on the deinstitutionalization process. In addition, the current austerity measures and administrative reform discussions of the government further complicate the deinstitutionalization process, as cost-effective solutions could undermine human rights realization.

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Institution-like practices in alternative living When it comes to alternative housing as a result of relocation after deinstitutionalization, they are not free from criticism in reality. This is particularly linked with attitude. This part presents another layer of complicated reality, in which physical relocation alone does not necessarily equal independent living. Many persons with intellectual disabilities who are relocated from institutions and childhood homes often move into assisted housing in community where they receive care 24 hours a day. Guided living means that they get support 12 hours a day without monitoring at night. Supported living means that they get support according to an agreed number of hours, for instance a few times a week (Katsui et al., 2019). Housing units such as group homes are often for 15 persons with intellectual disabilities or more. The statistics in Table 6.3 correlate with the trends of deinstitutionalization, as steadily increasing numbers of people with intellectual disabilities live in communities. The statistics in Table 6.3 seem to display a promising picture of independent living in Finland. Some interviewees explained differences between institutional living and community living: During my student days I went to, we went to see the institution, I visited one ward and I [ … ] turned around, went outside and I leaned against a tree and cried… And I thought that, no matter how [name of her son] turned out, I will never put him there [ … ] Somehow it was, there were no curtains, there was nothing there. It was somehow, it was so empty. A lot of people in a small space, there wasn’t one’s own [room], there were no rooms of your own or things like that. Now there are proper apartments, “I have my own flat, I lock the door, no one can come there, this is my home.” (Family member of person with disabilities. Cited in Tuokkola and Katsui, 2018: 16) [The biggest difference between living in an institution and living independently is] the fact that there are staff around 24/7. They are watching over you. When you live alone, there are no staff around anywhere. (Person with disability. Cited in Tuokkola and Katsui, 2018: 16)

Table 6.3 People with intellectual disabilities in group housing alternatives Year

2000

2005

2010

2013

2014

2015

2016

2017

Assisted Guided Supported All

2780 1555 553 4488

4552 2061 796 7409

5876 2168 972 9016

6628 2083 1317 10028

6616 1987 1274 9877

7728 2006 1548 11282

8265 1954 1684 11903

8484 1986 1880 12350

(Source: Katsui et al., 2019.)

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However, most of the research participants claim that an institution-like culture often continues in relocated housing when resettled from childhood homes and from institutions. This phenomenon is conceptualized as reinstitutionalization in the process of deinstitutionalization (Engen et al., 2019). People with disabilities particularly recounted certain rules and practices of the housing units which they did not like such as different forms of control. Some were forced not to wear certain hats or not to drink any alcohol, while others were forced to switch off the lights at certain times. Various research participants across various levels, especially representatives of OPDs, were of the strong opinion that many group homes are institution-like in terms of culture and do not represent genuine independent living. In some localities, both institution staff members and residents of the institution were relocated to the same group homes. This relocation was considered to be a way to secure the safety of the residents and to maintain friendships among the residents. At the same time, it shifted the institution-like culture and power relationship between the staff members and the residents to the new housing units. In this way, physical relocation took place, while attitude of both the staff members and the residents did not profoundly change because of the relocation. Municipalities recently started to provide relocation training for persons with intellectual disabilities, their families and staff members, which is considered to be a driver for the deinstitutionalization process: In the past, when I was working in an institution, [ … ] the resident just moved [to the community]. Of course, you gave good information, as much as you could possibly give, but the change was quite sudden for the resident. So now it’s really wonderful that we have a relocation coach working for the best of the customer, and we’re trying to find a good solution for the customer. (Employee of community-based service. Cited in Tuokkola and Katsui, 2018: 25) Relocation training is to prepare mainly residents and their families for forthcoming change and alleviate their worries and stress. This training is also expected to serve staff members to change their attitude. However, local experiences have shown that relocation training was not enough according to some professionals in the locality, as the municipality decides on the content and length of relocation training and sometimes does not purchase enough services. When many stakeholders find it hard to change their attitude, any lack of coordinated effort and service have crucial implications for the process of deinstitutionalization. Lack of Self-Determination Right Many actors across different sectors argue that institutional practices and culture are hard to deconstruct, as human rights-based understanding of disability is still superficial in Finland (Tuokkola and Katsui, 2018: 15).

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Looking at the big picture, deinstitutionalisation means going from a culture of institutionalisation more towards a form of living, which respects the disabled person’s right to autonomy. And that may actually be the biggest challenge here. The culture of institutionalisation is so embedded in the practice of care. [ … ] For example, the social welfare for persons with intellectual disabilities in Finland has had an emphasis on nursing culture. Persons with intellectual disabilities have been nursed, treating them as objects. [Therefore] hearing of the person’s [wishes] and taking their views into account has not been developed. (Representative of national Article 33(2) mechanism. Cited in Tuokkola and Katsui, 2018: 34) This lack of self-determination right is paramount in numerous examples in the process of deinstitutionalization, one of which is aforementioned institutional practice and culture. Many research participants with various backgrounds highlight that lack of choice was evident when relocation takes place for persons with intellectual disabilities. Lack of choice means that it is informed always only where is the place [to move into] now. [The way how the city promises the place is] more or less take it or leave it. In those cases they don’t listen to you. So when the city makes some decision, you just have to live with it. (Representative of local organization of persons with disabilities. Cited in Tuokkola and Katsui, 2018: 41) Many persons with intellectual disabilities are offered housing without any alternative. Lack of coordination among the actors in housing units also lead to a deterioration of relocation practice when relocation training should be quickly prepared and implemented when a room becomes available. As a result, some could not receive the personal assistant service that one was entitled to. The self-determination right is understood in several ways. On the one hand, as was mentioned above, persons with intellectual disabilities are often restricted from taking “risks” such as drinking alcohol or sleeping less. A popular Finnish punk band consisting of musicians with intellectual disabilities, Pertti Kurikan Nimipäivät, has a number of very depictive songs of their daily lives in Finland. One of them is entitled, “I always have to (aina mun pitää)” and the lyrics depict well their repetitive daily lives with a lot of rules. On the other hand, persons with intellectual disabilities do not get much support in personal hygiene in the selected locality of the research, “because of freedom of choice”. Some community-based service providers referred to certain cases when their appearance, such as hair and body odour, disrupted their activities including employment. But when a person with an intellectual disability did not want to take medication, he was forced to do so against his will. These are controversial cases when different interests conflict with each

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other (E.g. Vaughan, 2007), in which local and even individual decisions are made without clear guidelines. Persons with disabilities who are aggressive and have behavioural difficulties are also mentioned as the target of restrictions in their choices due to “inherent conflicts” (also in England in Muir and Goldblatt, 2011: 629). These are some examples how self-determination rights conflict with other interests or is simply compromised. Consequently, materializing self-determination right of persons with intellectual disabilities at the local level is not straightforward in reality according to most research participants, particularly according to those at the local level.

Attitude both as drivers and barriers This case study dealt with the deinstitutionalization process of persons with intellectual disabilities in Finland and highlighted some exemplary local-level realities that demonstrate the great complexity in implementing disability rights in practice. Deinstitutionalization and independent living for persons with disabilities have become national goals with the political will of decision makers, while implementation responsibility is left to municipalities and thus local-level actors. Deinstitutionalization is “new for all” and many employees of community-based services stress that it is about “learning by doing” (Tuokkola and Katsui, 2018: 27). In addition to the complicated realities and conflict of interests, attitude is also a collective factor that explains non-consensus towards independent living, institution-like practice in alternative living and lack of self-determination rights. Attitude was the central focus of discussion for both national-level and locallevel stakeholders in this research. Interestingly, they referred to attitudes as both drivers and barriers (Tuokkola and Katsui, 2018: 30). Thus, attitude is not only negative but is rather ambivalent (Söder, 1990). The positive attitude of decision makers in the form of political will, positive media image of persons with intellectual disabilities including the example of Pertti Kurikan Nimipäivät, and the positive attitude of children and youths with disabilities about independent living are mentioned as drivers. As the current young generation, both those with and without disabilities, takes it for granted that children and youths with disabilities go to nearby mainstream schools with peers without a disability, the attitude is changing to the better towards inclusion. Hence, society in general is changing in the positive direction, according to many research participants: I remember [ … ] when I was a child, [disability] was considered scary, we were even afraid that it might be contagious. Really. That was what it was like before, so we have made a lot of progress since then. Of course, there’s always things to improve on in people’s attitudes. (Member of local community. Cited in Tuokkola and Katsui, 2018: 19) Nevertheless, the negative attitude is an important lens as it sheds light on unequal power relationships (Scior and Werner, 2016). Older generations tend

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to be less tolerant to diversity and persons with disabilities in the same community, according to many research participants. In the focus group discussion among parents of children with intellectual disabilities, they admitted that “all persons with intellectual disabilities are bullied at some stage in their lives” (Scior and Werner, 2016: 35). Consequently, they admit that they are overprotective not to expose their young adult children with intellectual disabilities to discrimination and risks. The overprotection of parents partially explains that persons with intellectual disabilities are often lonely, passive and have low self-esteem (Scior and Werner, 2016: 36). Some [persons with disabilities] have had to return to a more assisted form of living because of mental health problems. Because they are left alone. They’re lonely. It’s a long wait from four pm until the next morning because they can’t [ … ] go out alone, they don’t necessarily, even though they have been taught but not everyone has the skills, so they’re left alone. They’re lonely. (Employee of community-based service. Tuokkola and Katsui, 2018: 36) There was a case in which an interviewee with an intellectual disability was denied treatment at a health centre when he visited it due having flu. The general doctor had not treated persons with intellectual disabilities and thus declined to take him as his patient. This is an eloquent example to show that the society has not genuinely been ready to include persons with intellectual disabilities who moved away from institutions to communities. Belonging and social relationships (Renwick et al., 2019) as well as affect (Goodley et al., 2017) are important aspects of inclusion in a community from the viewpoint of persons with disabilities. When those are not appropriately secured, the negative attitude such as stigma (Goffman, 1963), prejudice (Morris, 1991) and discrimination (Barnes, 1991) have been reinforcing a vicious cycle to many (Katsui, 2005).

Business and human rights Another barrier was the perceived clash between market-oriented priorities and disability rights realization. This was articulated more profoundly only after the case study was completed but an important turning point in the disability movement in Finland. In 2016, a procurement law passed and replaced the old law. Consequently, market principles were more strongly visible in decision making concerning public sector procurement after that. In 2018, a demonstration and campaign raised the question to the currently rampant market-oriented practices of disability service providers as well as their relationships with the municipalities that purchase their services. The initiative of citizens, when over 50,000 citizens’ signatures were collected, can launch a Parliamentary process to establish a new law or change a law. This campaign, “Not for sale! (Ei myytävänä! in Finnish)”, collected as many as 72,059 signatures and went to the Parliament for discussion. The main criticism against the status quo was the recent trend of public sector decisions on

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disability services, including housing services for persons with intellectual disabilities, that started to select the cheapest services over quality ones. Market-oriented competition quite frequently took place, which resulted in discontinuation and/or deterioration of disability services for many persons with disabilities. Therefore, the citizens’ initiative asked for prioritizing quality over other criteria and strongly asserted that this is a human rights issue. The time for the then Parliament was not enough to discuss this, as the government collapsed shortly after that and subsequently a new election took place. This is an illustrative example of neoliberalism that has come to penetrate into the disability rights discourse in Finland and also beyond.

Concluding remarks This evidence in this case study was still only part of the reality of Finland today despite its superficial positive image as a “good” and even “the happiest” country in the world (Helliwell et al., 2019) for three consecutive years. This case study used several pieces of evidence that such a superficial image is not enough to understand the complex reality. Deinstitutionalization in the form of physical relocation alone is not the panacea for realizing independent living for persons with intellectual disabilities in Finland. This was rightly pointed out in General Comment Number 5 on Article 19 of the CRPD: “appropriate changes of attitude at all levels and sectors of government, including local authorities, is required.” It continues that creating awareness-raising programme is an important step for the implementation of this Article. Without deconstructing deeply-rooted negative attitudes against persons with disabilities, deinstitutionalization cannot make the differences being sought. Independent living for persons with disabilities, therefore, requires many more interventions beyond deinstitutionalization. Ideological discussion about institution to community-based living is conceptually and politically important for changing the paradigm of disability as a human rights issue. At the national level, the human rights-based approach to disability started to be more widely understood by stakeholders. Yet, it is important to focus on recognition of the more complicated realities at the local level, as disability rights realization takes place at that level that has a great significance on the lives of individuals with disabilities. In fact, Finland is not an exception where negative attitudes in society hinder genuine agency of persons with intellectual disabilities pertaining to their housing and many other areas of their lives.

References Barnes, Colin. (1991) Disabled People in Britain and Discrimination: A Case for AntiDiscrimination Legislation. London: Hurst and Company. Committee of the Rights of Persons with Disabilities. (2017) General Comment Number 5: Article 19, Right to Independent Living. Available at https://www.ohchr. org/en/hrbodies/crpd/pages/gc.aspx

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Despouy, Leandro. (1993) Human Rights and Disabled Persons. New York: United Nations. Engen, M., Rømer, M. and Jørgensen, A. (2019) Public Care for People with Intellectual Disability in Denmark – Ideals, Policy and Practice. Scandinavian Journal of Disability Research 21(1), 228–237. doi:10.16993/sjdr.582 EUFRA. (2018) From Institutions to Community Living for Persons with Disabilities: Perspectives from the Ground. Brussels: EUFRA. Available at https://fra.europa.eu/ en/publication/2018/independent-living-reality Goffman, Erving. (1963) Stigma. Harmondsworth: Pelican. Goodley, Dan, Liddiard, Kirsty, and Runswick-Cole, Katherine. (2017) Feeling Disability: Theories of Affect and Critical Disability Studies. Disability and Society 33 (2). Available at https://doi.org/10.1080/09687599.2017.1402752 Helliwell, John F., Layard, Richard and Sachs, Jeffrey D. (2019) World Happiness Report. New York: Sustainable Development Solutions Network. Hellman, Matilda, Monni, Marjukka and Alanko, Anna. (2017) Declaring, Shepherding, Managing: The Welfare State Ethos in Finnish Government Programmes, 1950–2015. Research on Finnish Society 10: 9–22. Hsu, Chia-Chien, and Sandford, Brian A. (2007) The Delphi Technique: Making Sense of Consensus. Practical Assessment, Research & Evaluation 12(10): 1–8. Katsui, Hisayo. (2005) Towards Equality – Creation of the Disability Movement in Central Asia. Helsinki: Helsinki University Press. Katsui, Hisayo, Valkama, Katja and Kröger, Teppo. (2019) Living Independently and Being Included in the Community: Finland. Brussels: ANED. Könkkölä, K. and Sjövall, G. (1993) Independent Living and Personal Assistant Services in Finland. In B. Duncan and S. Brown (eds) Personal Assistance Services in Europe and North America. Berkeley, CA: Rehabilitation International and World Institute on Disability, 7–14. Martinez, Kathy. (2003) The Road to Independent Living in the USA: An Historical Perspective and Contemporary Challenges. Disability World20. Available at https:// www.independentliving.org/docs6/martinez200309.html Ministry for Foreign Affairs of Finland. (2018) Leaving No One Behind: The Finnish Approach to Addressing the Right of Persons with Disabilities in the Development Cooperation and Policy. Helsinki: Ministry for Foreign Affairs of Finland. https:// um.fi/documents/35732/48132/finnish_approach__persons_with_disabities_in_devel opment_cooperation__pdf__1 Ministry of Social Affairs and Health. (2018) Right to Social Inclusion and Equality: The National Action Plan on the UN Convention on the Rights of Persons with Disabilities 2018–2019. Helsinki: Ministry of Social Affairs and Health. Available at http://julkaisut.valtioneuvosto.fi/bitstream/handle/10024/160834/STM_7_2018.pdf Morris, Jenny. (1991) Pride against Prejudice: Transforming Attitude to Disability. London: Women’s Press. Muir, Kristy and Goldblatt, Beth. (2011) Complementing or Conflicting Human Rights Conventions? Realising an Inclusive Approach to Families with a Young Person with a Disability and Challenging Behavior. Disability and Society 26(5): 629–642. Oliver, Michael. (1996) Understanding Disability: From Theory to Practice. Basingstoke: Macmillan. Pertti Kurikan Nimipäivät. (2015) Aina mun pitää (song). Helsinki: Sony Music Finland.

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Renwick, Rebecca, DuBis, Denise, Cowen, Jasmine, Cameron, Debra, Fudge Schormans, Ann and Rose, Natalie. (2019) Voices of Youth on Engagement in Community Life: A Theoretical Framework of Belonging. Disability and Society. Available at https://doi.org/10.1080/09687599.2019.1583551 Scior, Katrina and Werner, Shirli. (eds) (2016) Intellectual Disability and Stigma: Stepping Out from the Margins. Cham, Switzerland: Palgrave Macmillan. Sihvola, Riikka. (2014) Henkilökohtaisen avustajan merkitys vaikeavammaisille henkilölle: Tarkastelussa kotona tehtävä auttamistyö ja suhde avustajaan. Master’s thesis in Social Work, Tampere University. Söder, Mårten. (1990) Prejudice or Ambivalence? Attitude towards Persons with Disabilities. Disability, Handicap and Society 5(3). Available at https://doi.org/10.1080/ 02674649066780241 SOTKAnet. (2018) Available at https://sotkanet.fi Tuokkola, K. and Katsui, H. (2018) From Institutions to Community Living: Drivers and Barriers of Deinstitutionalisation Case Study Report: Finland 2018. Brussels: EUFRA. Available at https://fra.europa.eu/en/country-data/2018/country-studies-p roject-right-independent-living-persons-disabilities-case-study United Nations. (2006) Convention on the Rights of Persons with Disabilities. Vaughan, C. Edwin. (2007) The Social Basis of Conflict between Blind People and Agents of Rehabilitation. Disability and Society 6(3): 203–217.

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The global disability rights realization in Uganda Political participation and representation of persons with disabilities Hisayo Katsui

Introduction Uganda has been known as a country with a strong disability movement (Mawa, 2003; Ndeezi, 2004; Lang and Murangira, 2009; Katsui, 2012). In Uganda, disability organizations started to be established during the 1970s. The idea of forming a national umbrella organization of persons with disabilities started around 1976 but was hindered by the war between Uganda and Tanzania in 1979–1987. In 1987, persons with disabilities in the Ruti Rehabilitation Center in Mbarara and the Kireka Rehabilitation Centre in Kampala realized the idea of forming the organization as the National Union of Disabled Persons of Uganda (NUDIPU) (Ndeezi, 2004: 10–11). Seventeen organizations of persons with disabilities (OPDs) joined NUDIPU. This was the first of its kind on the African continent (Ndeezi, 2004: 12). The ruling political party, the National Resistance Movement (NRM), has morally facilitated the growth of the disability movement. This has had implications for the development of the political participation of persons with disabilities, which will be discussed shortly in this case study. The Affirmative Action Policy 1989 promoted representation of marginalized groups including persons with disabilities, to uplift them in politics in particular and thereby also in society in general. In the Constituent Assembly for the formation of the Constitution in 1995, the late Eliphaz Mazima, a disability activist with a physical disability and the first elected chairperson of the NUDIPU represented persons with disabilities. As a result, the Constitution succeeded in including many clauses related to persons with disabilities. How the late Mazima managed to convince other delegates, especially other vulnerable groups, has become a legend among current disability activists (Millward et al., 2005; Hellen Asamo, personal interview on 31 January 2008 in Kampala). The current MP representing persons with disabilities, Asamo, explained that late Mazima mobilized the moral support of women who are traditionally to be blamed for giving birth to children with disabilities. Since then, NUDIPU has played a leading role in developing this political representation system in Uganda.

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Uganda has had a disability quota system in the political representation based on affirmative action policy of the government since 1990s. That is, from the village level to the Parliament level, 69,396 disability councillors are represented in their decision-making structures today. The representatives with disabilities are elected by persons with disabilities themselves at distinct levels, which realizes the global disability movement slogan of “nothing about us without us”. It is worth noting that gender balance is also stipulated in the political representation of persons with disabilities, so about half of the disability councillors are women with disabilities. Based on the post-doctoral research between 2007 and 2012 on the Ugandan disability movement (Katsui, 2012) and review of additional latest developments, the human rights of persons with disabilities in Uganda are elaborated in the light of political participation (Article 29 of CRPD) in this case study. The Ugandan disability movement is highly vibrant and has strong links to Ugandan politics through the disability councillors. This very link, however, causes internal fragmentation within the disability movement due to disability politics. This is elaborated in the example of general assemblies of NUDIPU, the umbrella organization of persons with disabilities in Uganda. The general assembly of NUDIPU is significant not only for its tangible example of members’ self-determination rights but also for its implications to the politics in Uganda. More precisely, the elected board members in general and the elected chairperson in particular, gain great visibility through their positions and have historically become members of parliament (MPs) representing persons with disabilities. This case study exemplifies several challenges to operationalize political representation and further sheds light on the power of social conditions that have a significant impact on human behaviour concerning human rights (Woods, 2010: 51). That is, human rights are not only about choice and the decision of agents, but about social situations including structures and cultures in which one is located (Landman, 2006: 52). This case implies a deep interconnection between civil and political rights, as it appears in the exercise of the general assemblies, and economic, social and cultural rights.

Methodology The aim of this study was to investigate experiences of Ugandan women with disabilities regarding a human rights-based approach in the framework of international and development cooperation activities. Based on evidence and experiences, an empirical theory of a human rights-based approach to disability was established (Katsui, 2012: 128–141). A participatory research approach (Oliver, 1997, 2002; Barnes, 2001; Walmsley, 2001) was central throughout the study, which was part of a research project to which three other researchers with disabilities from Finland and Uganda belonged. The project paid careful attention to the power relationship within the research team members and with research participants. Several OPDs were consulted

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before, during and after the data collection, while both project team members and research assistants were persons with disabilities. In this study, the assistants were Ugandan women with disabilities (more details in Katsui, 2012: 46–50 and in Chapter 11 of this book, on the participatory research approach). The participatory research approach was used to increase transparency and ownership of the research process for local persons with disabilities and to enhance validity and relevance of the research results. The primary data for this study were collected from two periods of fieldwork in Uganda in 2008 and a visit to Uganda in 2012 for disseminating the post-doctoral research findings to research participants when the book was published. The first fieldwork session collected 66 personal interviews at the grassroots including 23 persons with disabilities, 22 OPD staff members, six MPs representing persons with disabilities, and other relevant stakeholders such as university lecturers, occupational therapists, and employees of a school for the Deaf. Additional secondary data complement the former data set through literature reviews. In addition, two group interviews were held in the internally displaced people’s camps in the Northern city of Gulu involving 16 women with disabilities. Furthermore, about ten key OPD events were observed. During the second period of fieldwork, major events such as the International Day of Persons with Disabilities march, and two general assemblies of OPDs (UNAD and NUDIPU) were observed. Due to the nature of these key events, informal exchanges and debates were among the more precious materials (Pleyers, 2010: 31). It is difficult to quantify those informal communications in exact numbers such as how many informal communications and how many minutes. In addition, deaf women were visited at their homes in their village during the second period of fieldwork to gain an understanding of their living environments and experiences. The third visit was meant for disseminating the study results to the research participants. Three major activities were implemented: 1) visits to the deaf women in their village to deliver books and findings summarized in the form of picture compilations due to their illiteracy; 2) a book launch event held at NUDIPU and delivery of the books to research participants and relevant stakeholders; and 3) a university teaching course on disability and human rights to human rights master’s students at Makerere University. The research participants were provided with an information sheet and informed consent form either written on paper or orally, especially when they were illiterate or people with certain disabilities such as visual disabilities. Participants were informed about voluntary participation, privacy and the option to withdraw without penalty before their engagement with the study. Only MPs appear with their names in my publications as they are public figures. All these interviews and events were digitally recorded if permission was granted by the participants, and transcribed word-by-word. A field journal of about five pages a day was kept throughout the fieldwork periods. These data were analysed with qualitative content analysis technique. Several theoretical frameworks were applied to analyse the data. First, human rights principles and key concepts of participation and non-discrimination are widely used as analytical lens to highlight perspectives of Ugandan women

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with disabilities in understanding the complex realities of international and development cooperation activities and to further interrogate power relations (Frediani, 2010: 180). The decision-making power was especially paid attention to because it is an indispensable aspect of well-being for persons with disabilities (Jenkinson, 1993; Morris, 1998; Finlay et al., 2008). Intersectionality theory (Knudsen, 2006: 61–76) was useful for understanding systematically marginalized positions of women with disabilities.

The civil and political rights for persons with disabilities The human rights era started gradually with the United Nations Declaration on Human Rights in 1948 (Seppänen, 2005: 10) when peace and prosperity were on the agenda after World War II. Both civil and political rights and economic, social and cultural rights are bodies of human rights laws. Due to the Cold War between the East and West, human rights were too bound to political ideologies until the end of the Cold War (OHCHR, 1996–2019). Uvin (2004: 14) categorizes three generations of human rights: the first generation was on civil and political rights which is also cited as “negative rights” not to degrade rights particularly by the states as duty-bearers around civil and political rights. This generation was centred on the West. The second generation, on the other hand, was on economic, social and cultural rights which are cited as “positive rights”, including an adequate standard of living. This was USSR-centred. Both generations were meant for individual rights. Nevertheless, these human rights are intertwined (OHCHR, 1996–2019). The third generation of human rights was collective or solidarity rights such as rights to development and self-determination, the latter of which is to do with decolonization from the 1960s onwards and both of which subsequently entered into non-Western contexts and into the realm of development particularly after the 1990s. The emergence of the human rights-based approach coincided with the demise of neo-liberal policies (Seppänen, 2005:13) as a criticism against economic-centred development policy and practice. The human rights-based approach finally became mainstream in 2000 with the United Nations Development Programme (UNDP)’s “2000 Report on Human Rights and Human Development”, in which human rights became development objectives rather than an instrument for economic growth (ibid.: 15). With the UN Convention on the Rights of Persons with Disabilities (2006), a “human rights model to disability” or a human rights-based approach has come to the mainstream of the disability discourse (Degener, 2016). The civil and political rights is stipulated in the Article 29 of the Convention on Participation in Political and Public Life. In Uganda, the enactment of the Local Government Act (1997) launched the practice of political representation of persons with disabilities into mainstream politics. As the number of districts increase, the number of disability councillors has reached almost 70,000. The election process initially relied heavily on NUDIPU by utilizing its wide coverage and networks. When the

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Act was going to be introduced, NUDIPU, with the help of the Disabled Persons’ Organisations Denmark (DPOD), quickly mobilized local persons with disabilities to represent district positions. That is, the NUDIPU structure developed hand-in-hand with the development of the government’s local structure. Therefore, “NUDIPU is regarded as an NRM mechanism and intimidation occurs during multi-party elections” (CDRN, 2009: 27). This had implications. During the first few times of the national elections, many of the NUDIPU local district branch representatives were elected as local disability councillors, as the election procedure and structure of the NUDIPU general assembly was replicated in the national elections for representatives of persons with disabilities. In other words, NUDIPU and the disability councillors have been deeply intertwined in both the good times and the bad times. This special arrangement was subsequently abandoned by the NUDIPU general assembly in 2008, which decided to secure its political independence from the ruling political party. The shortcomings of using the NUDIPU structure are many. First, representatives of the newly recognized disabilities, other than the three major ones (deafness, blindness and physical disabilities) were not given an entitlement to vote. Robb (2012: 29) points out that persons with psychosocial and intellectual disabilities are deprived of their rights to vote in this way. Second, only districts that have NUDIPU branches can send voters, while the number of districts is increasing. Third, it is said to be easy to manipulate the small number of voters. In its petition, the Legal Action for Persons with Disabilities Uganda (2012) problematized the bribery custom in the election. The MPs are given a “constituency development fund” by the government, which is literally meant for the development of the constituencies they represent, namely persons with disabilities. Each MP received about €4,000 (James Mwandha, personal communication on 11 December 2008 in Kampala). Many anonymous interviewees and informants argued that this money was used for election campaigns, including the election of MPs and the general assemblies of OPDs. At the same time, the merit recognized for having political representation is well known. Many disability councillors and local delegates of OPDs have gained self-confidence. A deaf woman expressed how proud she is now: If I move with the deaf, I feel so confident. I don’t feel ashamed because I share the same thing and I’m not the only one. In the beginning, I was so afraid in the community of hearing people. I was one of the few deaf. Now I feel very proud because I’m not the only deaf and there are a lot of them here. (Personal interview on 4 February 2008 in Kampala) Margaret Baba Diri, a blind woman and a Member of Parliament, also recalls her initial engagement with the disability movement as very empowering: “First of all, I was encouraged because there were so many blind, deaf, and

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they all looked so smart. I was impressed that I was not the only one. So I became very active in the disability movement” (personal interview on 19 February 2008 in Kampala). She was one of the first five MPs representing persons with disabilities elected in 1996 and elected as a Member of Parliament in the mainstream elections in 2006 and 2011. She continues, I thank people with disabilities. They are the ones who built my capacity. When I lost my sight, I lost all hope completely. I thought that was the end of my life. I thought sight was everything. When I lost my sight, I could not see my children, I could not do anything for myself. I said that was the end. But when I turn to the disability movement, I build my capacity through all the programmes of NUDIPU and I am exposed to many things. Alex Ndeezi, the Deaf Member of Parliament representing persons with disabilities acknowledges his position as a role model for other deaf people (personal interview on 28 January 2008 in Kampala). He often supports and encourages other deaf people by showing his own example. The fact that persons with disabilities were eloquently making appeals and negotiating their own rights was an empowering process for many informants. This political space for exercising their right to vote made the delegates realize their power both in good and bad ways. NUDIPU commissioned a study on “The Impact of Political Representation of Persons with Disabilities in Promoting Inclusion of Persons with Disabilities in Government Structures, Programmes, Policies and other Legal Instruments in Uganda” in 2019. According to its study report (Katende et al., 2019), many positive impacts have been observed beyond the significant number of disability councillors (N=69,396). For instance, employment opportunities were newly created for persons with disabilities with affirmative action policy in different districts through their by-laws, by which time they had enough legal and policy knowledge and skills to negotiate with other councillors. The disability councillors are part of the management of the Special Grant for Persons with Disabilities, a public local fund for groups of persons with disabilities for their activities and projects. This fund is much smaller than the funds earmarked for women or youth: about one quarter. However, there have been corruption cases concerning disability councillors when the monitoring and evaluation mechanism is not well established. At the same time, beneficiaries are required to have a national identification card, while groups have to be officially registered. For many individuals with disabilities and groups, these are the barriers that hinder them from benefiting from public poverty reduction resources (Katende et al., 2019: 25). In addition, a lack of resources for purchasing assistive devices and personal assistants’ support has fundamentally deteriorated their opportunities to attend meetings and training sessions. Accountability and transparency of the councillors, voter bribery, and fragmentation and stagnation of the movement are pointed at as some of the core problems today.

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Disabilities and politics in the general assemblies of OPDs In the UNAD general assembly which took place prior to the NUDIPU general assembly, the Deaf Member of Parliament was vocal as then executive director and secretary of the board of the organization. He presented several reports and answered questions. Even during the breaks, his videotaped speeches were shown on the TV screen at the front of the room. In the author’s understanding, he supported the outgoing chairperson to continue his chairpersonship. For instance, he tried to protect the chairperson and to answer questions raised about the “corruption” of the UNAD during his public election campaign to continue his chairpersonship, the highlight of the general assembly. This terminology of “corruption” was used by the person who posed the question, which does not necessarily determine that the UNAD is corrupt. In any case, the executive director first tried to answer the question, but audience asked him not to intervene and insisted that the chairperson should answer the question. He did eventually. This incident exemplified some of the complicated power relationships among the delegates within the organization. In addition, a Member of Parliament appeared at the venue on and off, which showed that he was an ally of the executive director/the Deaf Member of Parliament for the NUDIPU general assembly. All five MPs were present towards the end of the general assembly. It was reconfirmed when this MP was finally introduced by the executive director as the honourable guest of the general assembly, and was given time to present his long speech. The speech included the following: We support each other in the forthcoming elections. I am the board member representing [one of the four regions] in NUDIPU. And I am standing for the position. If you are from [the] region, please support me. I can bring three deaf persons to the board. Let’s cooperate with each other in the NUDIPU general assembly. We have to choose a very strong board. [Name of the ED] was the chairperson of NUDIPU and now an MP. We have to change the Constitution and allow MPs to become board members. This is my appeal. He appealed for an amendment to the NUDIPU Constitution which prohibits MPs from taking board members’ positions. He was elected as an MP in 2006 when he was a board member of the NUDIPU but remained on the board contrary to the Constitution. This alliance between the executive director and the Member of Parliament was actually part of a bigger alliance. At this stage, the author learnt that all five MPs representing persons with disabilities supported the re-elected chairperson of UNAD to stand for the chairperson’s position of NUDIPU. In the NUDIPU general assembly, all MPs were alert. They even slept in nearby hotels to ensure easy accessibility to the delegates during the

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time of the general assembly for influencing the “self-determination” exercize in the election. Face-to-face meetings are the crucial form of interaction with the delegates. Thus, during the NUDIPU general assembly, delegates had sleepless nights. Sign language interpreters were also mobilized throughout the night for communicating with deaf delegates (a sign language interpreter, personal communication on 9 December 2008). Candidates and their supporters were knocking on the doors of delegates’ hotel rooms all through the night campaigning for one or against another. The author stayed chatting with some delegates until midnight for the two nights at the venue and saw the MPs and others going up and down. Various groups of delegates were taken from the venue one by one to be treated with food and drinks. The night before the election day, one Member of Parliament “betrayed” the alliance and decided not to support the UNAD chairperson for the position of chairperson at NUDIPU. He began to campaign against him instead. Some Deaf delegates received mobile phone airtime worth up to 50,000 shillings (20 Euros) for changing their mind. That is equivalent to one month’s income in a city area. The voters were promised that the vicechairperson would be deaf if they give up the idea of supporting the UNAD chairperson for the NUDIPU chairperson’s position. An MP and others told the author that the “betrayed” MP changed his mind because he worried about losing his own parliamentary position. When the UNAD chairperson also becomes chairman of the NUDIPU, he becomes too powerful. As a result, the MP might not win in the next national parliamentary election in 2011, because they are both competing to represent the same region. Moreover, the UNAD chairperson has enjoyed the strong support of the current Deaf Member of Parliament, which caused this Member of Parliament to “betray” the alliance. With or without the influence of the MPs, the Deaf candidate lost the chairperson’s election against the blind candidate, while a Deaf woman was elected to the vice-chairperson’s position unopposed: no candidate stood against her. Actually, several informants told the author that some candidates could not even stand for the positions for election due to the pressure of the MPs. In one region, one candidate had a personal conflict with an MP, and thus this MP campaigned against him. He was a highly qualified and respected person among the disability community but was not re-elected. Many informants told the author that this was the most regretted result during the general assembly. At the end of the general assembly of the UNAD, one Deaf woman thanked the MPs saying, “I thank you for the MPs and all your participation. Please continue the support. We are interdependent” (on 6 December 2008 in Kampala). A staff member of a Northern “partner” OPD stated that two Northern actors, including her own, had once “intervened” with a “very harsh letter” against the NUDIPU because of the involvement of the MPs. She said,

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I’m not happy with [the] parent–child relationship, but we have the money. So, it is true that we have the power. MPs should not be there. The end of the NRM and (the President) Museveni can be the end of the NUDIPU. (Personal communication on 9 December 2008 in Kampala) Despite the various interventions by the MPs, the NUDIPU general assembly decided to separate itself from the influence of the MPs and the ruling political party, the NRM. For instance, the general assembly reaffirmed that MPs should not be on the board. It also did not change the Constitution. As a result, the long-serving MP could no longer continue as a board member. A journalist wrote in an article in one of the major newspapers, the New Vision, on 11 December 2008, “MPs Barred from the NUDIPU Board”. The general assembly also decided to separate the NUDIPU from the national election exercise of MPs to be more accountable as a non-partisan NGO against the criticism that the NUDIPU is an organ of the NRM (CDRN, 2009: 27). It was celebrated among the delegates that these were clear signs of democracy, even against the hitherto powerful MPs. In the 2011 Parliamentary election, however, there was no change for the voters in practice. The same delegates voted for MPs regardless of the decision made in the general assembly. As has become clear, the self-determination of individuals and the collective right of the delegates was influenced by politics in many ways.

Disability politics Politicians and internal disability politics played a significant role in the general assemblies. The UNAD is for the deaf and the NUDIPU for “every person with a disability”, according to their mission statements. However, different disabilities: sex, age, education level and/or geographical locations, among others, have created a certain hierarchy: power is concentrated on certain groups of people among the persons with disabilities. This part elaborates the diversity of “persons with disabilities” and the internal politics that were manifested in the exercises of the general assemblies. The delegates’ demography had implications for disability politics. In the UNAD general assembly, chairpersons of seven regional associations selected 20 delegates each to participate in the general assembly. One region, the Karamoja region, has been absent from the UNAD activities due to its remoteness, insecurity and perhaps also disability politics, as it is the place with “the worst humanitarian indicators in the country” (OCHA, 2010). Thus, there were supposed to be 140 delegates from seven regions. In reality, there were 109 delegates present. Fifty of them were women, and 69 were youths under 30 years old. In the NUDIPU general assembly, 56 districts were entitled to send four delegates per district. The number of the districts still follows the older government structure, which has been more than doubled today. Among the four delegates, at least one should have a physical

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disability, one should be blind and one should be deaf. A woman has to be included among the four delegates. In addition, four Ugandan National Association of the Blind (UNAB) delegates and four UNAD delegates were entitled to vote due to the affirmative action policy. Furthermore, 14 outgoing board members are also entitled to vote. In total, there were 243 eligible voters present, of whom 113 were women; 116 were categorized as persons with physical disabilities, 59 were blind, 57 were deaf and one represented three OPDs, namely the Mental Health Uganda (MHU), the Epilepsy Support Association of Uganda (ESAU) and the Uganda Parents Association for Children with Learning Difficulties (UPACLED). Some did not have any disability recorded. Eighty-eight were youths. The delegates elected the following board members in the respective OPDs: the nine (eight in practice) UNAD board members consist of seven (six in practice) regional representatives, one youth and one woman representative, while the 13 NUDIPU board members consist of eight regional representatives (four men and four women), two blind (one man and one woman), two deaf (one man and one woman) and one youth. Two out of four executive committee members of the NUDIPU board are women (the vice-chairperson and secretary). It was overwhelming to witness that more than 100 deaf people from all over Uganda gathered together for this general assembly, let alone the general assembly of the NUDIPU which mobilized the 243 delegates with one guide for each blind delegate and eight sign language interpreters for the whole deaf community. The demography of the delegates and the board members looks superficially democratic on paper, if not carefully investigated. This part first elaborates the disability politics through the analysis of the delegates’ demography. First of all, the NUDIPU delegates with voting rights were limited to persons with physical disabilities, blind and deaf persons in terms of disabilities, although many more OPDs had appealed for full membership and the right to vote. On the first day, there was a demonstration of an OPD, the Uganda Parents of Children with Learning Disabilities (UPACLED), to appeal to the delegates to grant them full membership of the NUDIPU. They were given three minutes for their presentation. Mental Health Uganda (MHU) also disseminated printed papers appealing for the same. After a heated discussion, the membership part of the Constitution was amended. Consequently, all OPDs of national character were granted full membership and the entitlement to attend annual general assemblies. For the general assembly, which is held every five years, however, it was decided to maintain the status quo: only persons with physically disabilities, blind and deaf persons were entitled to vote. The annual general assemblies were a stipulated requirement in the Constitution, but had not taken place so far. Donors were sceptical that the NUDIPU would be able to raise funds for holding the annual general assemblies. The ones who hold the power of “delegate status” did not give up their advantageous positions in the general assembly in any case, perhaps due to the superficial reason of financial constraints but also due to disability politics. That is, voices were heard to a limited extent, yet votes were not

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given. In between voices and votes, there lies a crucial line between mere participation and self-determination rights. Delegates with voting rights vote clearly have more power than those who do not have the right to vote. Representative participation is one form of democracy, which in this context is used as a means to reinforce the power of powerful ones. The “dominance of some categories at the expense of others” and “discrimination within the disability fraternity” were illuminated in the general assemblies but an observed weakness in the disability fraternity in general (Uganda Disability Fraternity, 2007: 16–7). Resistance to change from the side of the powerful ones was a clear sign of efforts to maintain an undemocratic power structure. Backlash discourse (Jung, 2011: 270) was clearly present. Second, many of the UNAD delegates were illiterate. The secret ballots for printing the names of the candidates they vote for did not work out in practice. This is due to the profound discrimination against deaf people in Uganda, as the illiteracy rate among Ugandan deaf people is as high as 95% (Development Research and Training, 2008: 53). Some suggested numbers, such as “1”, “2” and “3” but the idea was turned down because it was still too difficult for many. Consequently, at the UNAD general assembly, it was agreed that the delegates were to draw strokes on the secret ballots, such as “I”, “II” and “III” instead of writing names. In the Central region’s election, however, all delegates could write their names. This indicates rural–urban gaps in literacy among deaf people in Uganda. In one election, one drew an “X” on her ballot for the election of a deaf woman representative and the vote was disqualified. Towards the end of the elections, one woman voiced her concern, “On the ballots, many of us don’t know what is written there.” In the general assembly of the UNAD, a deaf woman from a rural area came to the front only to say, “I’m here for the first time. I feel honoured. The deaf in rural areas don’t even have food” (on 5 December 2008 in Kampala). These examples illustrate a huge diversity among the delegates and imply that some were not able to follow what took place in the general assembly at all. The education level of deaf people is extremely low. Many of them could not follow the discussions of the UNAD general assembly at all because they did not know sign language. This was officially pointed out as a challenge. Nevertheless, the general assembly of the UNAD went on with the use of the Ugandan sign language. At this point, many were left out. The selection of the 20 delegates each from a region is made by the chairpersons of the regions themselves. The delegates from the same region elect the forthcoming representative of the region. Naturally, the chairpersons choose those who are supportive and seem “weak” to increase the likelihood of re-election (anonymous deaf delegate, personal interview on 7 December 2008 in Kampala). At the same time, multiple voices assured the author that the outgoing regional chairpersons deliberately choose lowly educated persons because they are easier to convince and they avoid potential opposition, as the social network analysis explains (Woods, 2010: 63). When the author socialized with the delegates during the days and nights, she realised that many more women

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Figure 7.1. This is the election scene to decide on the board member representing deaf women at the UNAD general assembly. Four candidates are standing, showing their backs. A piece of paper is taped to each candidate’s back with her number, such as “I”, “II” and so on written on it. Four is also only represented in strokes, “IIII” instead of “IV”.

were both illiterate and did not have the literacy of sign language than were men. Naturally or coincidentally, four out of the six regional representatives’ positions were elected unopposed. This silently supports the argument of the rather sophisticated manipulation by the powerful ones of the other delegates. One position is meant for a woman representative. Aside from that, only one woman was elected to the board. Therefore, two women and six men were elected to the board of UNAD. It was particularly interesting to observe the questions and answers raised during the general assembly prior to the election. A deaf woman raised the following questions and the Executive Director of the UNAD, who is also the Member of Parliament, answered: Seven regions are not represented. One is left out. Karamoja is left out. This is a big gap. We also have a gender balance. Four regional models are better. I’m ready to fight for the gender balance. Many countries say “Uganda is doing well.” But we are oppressing women. We are at the bottom regarding women. [applause] […]

Q [WOMAN]:

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Six regions are here but one has been forgotten. I know that the invitation letter was not sent there. This is a hidden agenda. The general assembly should be made up of seven regions. The Constitution says that we elect seven regions, and so we have to follow that. Karamoja deaf should be included. It’s discrimination against them. There is no democracy here. ED: Now tea is ready. Let’s go for a tea. […] Q [THE SAME WOMAN]: There are no Karamoja delegates! ED: It’s time for tea. Closed! Q [THE SAME WOMAN]:

This same tactic was used several times to stop strategic discussions, including the time when the chairperson was presenting the activity report.1 He started his presentation by following the written material. He explained what the UNAD had achieved. Then, he came to the section on challenges in the printed materials. But he said, “The dinner is ready”. And the chairperson’s presentation was terminated there without going into the challenges. Those who are illiterate did not know that there was the section on challenges which raised crucial issues for the delegates to discuss. The challenges included, “Deaf prefer cash handouts rather than accessing services or training to empower them. Sometimes they cannot participate in activities due to lack of money for transport to meeting venues” and “Some regional associations are not active at all, e.g. Karamoja has no functional executive committee”. These statements imply that the activities have not accommodated deaf people who are vulnerable and poor, and thus it would have been important for these issues to be discussed. The more educated and more powerful delegates used undemocratic methods to avoid certain discussions, which went unnoticed by many delegates. In this case, the power and knowledge relation of Foucault (1963) was relevant in this specific social situation. Another tactic used to end a discussion when the chair of the session agrees with an idea raised by one delegate is to ask the audience, “Who supports the idea? Seconded by whom?” One more is needed then to finish the conversation by declaring, “The idea was seconded by A”. This was very widely used in both general assemblies in favour of the powerful. It did not necessarily represent the majority voices, which made deaf delegates particularly vulnerable in the NUDIPU general assembly. Both persons with physical disabilities and blind delegates could raise their voices and appealed, “Yes!” or “No!” when asked “Do you agree?” However, deaf delegates’ “voices” in sign language were disregarded on too many occasions because the sign language interpreter responsible for the voice of the deaf audience can serve one at a time and because others do not understand the signs of the deaf expressing their opinions. Something similar was also observed among deaf delegates in terms of power relationships. When nominations were called for some positions, “vocal” people started to show the sign “close!” to express that the nomination should be closed after the candidate they were supporting had been

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nominated. Even when there were other nomination hands up, sometimes they were not visible among the people who repeatedly showed “close!” signs standing up. It was observed that at least one candidate who raised a hand for nomination but could not be nominated due to the “vocal” signs of “close!” among the deaf delegates. Another challenge in the NUDIPU general assembly, specifically for the deaf, was the way the election took place with secret ballots. As was mentioned, many deaf delegates had the great disadvantage of not being able to write the names of the candidates. Each blind delegate had a guide of their own, while the deaf did not have such a personal assistant. At the beginning of the general assembly, one deaf delegate publicly announced the challenge of the deaf delegates in the election process. It was recorded but ignored in terms of succeeding action in practice. The deaf delegates got frustrated as the general assembly proceeded. When a blind delegate made the next statement on the first day, the “war” between deaf and blind people was re-confirmed: The guides for blind people and sign language interpreters are totally different. Because we don’t have eyes, we are vulnerable in movement. For instance, we cannot go to the toilet alone. We cannot eat alone. The difficulties of ours are bigger. For you, deaf people, if some learns to know your language, you can communicate. The magnitude of our needs is totally different. When resources are limited, the rights of persons with different disabilities collide. All rights should be equally important. Nevertheless, in practice, priorities are made that frequently infringe on the rights of those whose priorities are low. On the second day when the election took place, one of the deaf delegates told the author, “I’m ready for the war!” There was one deaf person contesting the chairperson’s position in the NUDIPU general assembly. The other candidate was the outgoing chairperson who is blind. He was elected in the last general assembly by taking advantage of the alliances: then deaf and blind people were allies and tried to go against those with physical disabilities who were numerically dominant (female deaf delegate, personal interview on 7 December 2008 in Kampala). In-group and out-group bias was actively utilized (cf. Woods, 2010: 67). A blind person stood for the Parliamentary election in 2006 and lost it. During the election, the alliance between the deaf and blind is said to have fallen apart. The deaf and blind were supposed to support each other’s candidates and not to oppose each other’s candidates. However, a blind candidate stood against the deaf MP to be re-elected, which resulted in a situation in which the delegates did not support each other. The commitment/consistency bias was broken down (cf. Woods, 2010: 66). As a result of the collapse of the alliance, the blind candidate did not go through in the national election. This was remembered bitterly in the NUDIPU general assembly two years later, as some explained in detail. In this regard,

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“disabilities and politics” and “disability politics” overlap. Hellen Asamo, then chairperson of the National Union of Women with Disabilities of Uganda (NUWODU) and current Member of Parliament proclaimed, “We are chairpersons as well as politicians”. Throughout the general assemblies, female delegates remained largely silent. The author made a marking in her journal whenever females spoke up. According to the count, only 10–15% of the speakers were women in both general assemblies. Uganda is highly male-dominant (Ministry of Finance, 2008: 53–78; DSI, 2007: 2), which was reflected in the general assembly exercise. That is, the local power structure affects the operationalization of the human rights-based approach in the general assembly practices. At the same time, the social conditions had a powerful impact on the delegates’ self-determination behaviours. In the end, 10 out of 13 board members’ posts were taken over by the same people in the NUDIPU general assembly. One of the re-elected board members was particularly contested due to the Constitution article that prohibits serving in the same position for more than two terms. The appeal from the audience continued to be ignored, and so one blind person went to the front and forcefully grabbed the microphone and raised this issue to the audience, despite of the fact that he was not appointed to speak. This, however, was solved through a strange interpretation of the Constitution: “The Constitution was amended in this general assembly, and thus the content of the Constitution is valid only from today onwards.” That means the clause to prohibit long-serving in a position cannot be applied to anybody, because the Constitution is amended at every general assembly. The board members have been highly criticized for their decision-making power over various issues. This issue was particularly explained in the NUDIPU organizational assessment report (CDRN, 2008), which was presented by a consultant during the general assembly. Many of the findings, however, were not discussed in the general assembly, intentionally or not. The delegates were not given a copy of the report which the author managed to obtain, nor the information. For instance, the too-expensive and too-powerful board was considered “not justifiable” in the report (CDRN, 2008: 31–32). Another report similarly asserted that the NUDIPU board members are “too powerful and out of reach of the membership” (DSI, 2007: 40). Staff member C of a Northern OPD (personal interview on 18 February 2008 in Kampala) pointed out the same. This staff member analysed that it is similar to the general Ugandan context (including politics) in which one inherits and keeps a position, or gets it because s/he is rich enough to pay to gain support. Consequently, the distance between the NUDIPU and OPDs is “ever increasing” and “many OPDs have lost confidence in the NUDIPU which should have been a unifying factor. They no longer identify with it as such” (DSI, 2007: 36). It further explains the relationship between power and money in Ugandan organizations as follows:

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Hisayo Katsui Because of poverty, the motive behind forming a new organisation might be to create a source to a steady personal income rather than to address a specific issue. A position on the board of directors of an organisation gives allowances on which one can keep a family. Poverty among leaders and activists in the disability movement therefore can confuse the picture of the drive and the motivation behind activities and it sometimes create organisational power struggles, which is not so known in Denmark. (DSI, 2007: 37)2

Another anonymous informant told the author that the amendment ideas of the Constitution were also manipulated in favour of those who wanted to reinforce the status quo (personal communication on 11 December 2008 in Kampala). District Unions documented and submitted their ideas of the Constitutional amendment to be discussed in the general assembly of the NUDIPU, which were handled in regional workshops. However, in the board meeting just before the NUDIPU general assembly, it was decided that the discussion would take place in the actual general assembly itself. And yet, the discussion did not properly take place with the presentations of those amendment ideas from the District Unions. The amendment ideas were therefore undermined both in the board meeting and in the general assembly. In such a sophisticated manner of using knowledge as power, certain decisions were made in favour of those who are powerful (see social network analysis of Woods, 2010: 63). At the opening of the general assembly of the NUDIPU, one representative of the Northern “partner” OPD made a speech and urged the delegates to democratic decision making: [W]e as OPDs have the same responsibility to act democratically and transparently. We have to practice what we preach. Unfortunately, we too often see that leaders stay on and on, and that leadership development for the younger generations is not a priority, that women are not encouraged to take on leading roles. There are too many examples of moneys are being used to uphold structures as they have always been, rather than using them to create a change, and to give more disabled people the opportunity to become empowered, demand their own rights and live an independent life. This precautionary speech, however, was not taken into consideration in the exercises of the general assemblies in both OPDs. The present and previous sections elaborated on the main social fabrics that had great impact on the delegates’ self-determination rights and behaviour around it. The economic, social, and cultural rights including education and economic empowerment are deeply involved in operationalizing the civil and political rights in a proper manner.

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Concluding remarks This case study focused on political participation and representation of Ugandan persons with disabilities through the observation of their general assemblies of their representative national organizations of persons with disabilities. The affirmative action policy of the Ugandan government has been widely recognized as a positive step to reduce deep-seated inequalities and discrimination experienced by persons with disabilities in Uganda (Mawa, 2003; Ndeezi, 2004; Lang and Murangira, 2009; Katsui, 2012). Many examples have been made on local affirmative action practices creating more opportunities for persons with disabilities at the grassroots level. Both persons with and without disabilities have been slowly changing their attitudes as many as 70,000 persons with disabilities are disability councillors today all over Uganda. Yet the downside of the political representation can also be observed. For instance, individualization and fragmentation of the disability fraternity due to the personal gain which has overrun the collective cause of disability rights. The local disability councillors are also dissatisfied with the lack of collaboration among the MPs to raise their voice as one. The negative side was also accelerated by the introduction of multi-party politics, when candidates for parliament are increasingly divided due to their affiliations with different political parties unlike the time when the ruling party, the NRM, was the only option for becoming the MP. Today, the national election no longer relies on the NUDIPU structure when a new structure was lately introduced to utilize a more independent National Council of Disability with the enactment of the National Council of Disability Act (2013) and the new Persons with Disabilities Act (2019). Disabilities and politics continue to be dynamic in Uganda. This case study eloquently displayed the significance of intertwined social fabrics, even among the disability movement in terms of both disability and politics and disability politics, that have a great impact on operationalizing disability rights: the right to civil and political rights is not only about agency of the voters but also about procedures of representation and redistribution of power and knowledge in a given context. This is the reason why operationalizing a single human right is not a panacea for uplifting a long-marginalized group of people. Multiple and holistic approaches at various levels are instead needed, not only at the local and national level but also beyond that at the global level. The observation of the general assemblies had some implications at the global level in the forms of international cooperation, globalization of disability rights discourse and neoliberal power structures.

Notes 1 The chairperson of UNAD disagrees with this. 2 The report continues to assert that this centralized power structure applies to each OPD. “The OPDs have increasingly become entities of the leaders (Board of Directors) who set their terms of reference and manipulate their membership. As a result, many organisations lack transparency in their operations” (DSI, 2007: 41).

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References Barnes, C. (1991) Disabled People in Britain and Discrimination: A Case for AntiDiscrimination Legislation. London: Hurst and Company. Barnes, C. (2001) ‘Emancipatory’ Disability Research: Project or Process? Public lecture at the City Chambers. Glasgow, 24 October 2001. CDRN (Community Development Resource Network). (2008) NUDIPU Organisational Assessment Report (unpublished report). Degener, Theresia. (2016) Disability in a Human Rights Context. Laws 5(3). Available at https://doi.org/10.3390/laws5030035 (accessed 10 March 2020). Development Research and Training. (2008) Mid-Term Review of the NUDIPU HIV/ AIDS Project: The HIV Virus Does Not Discriminate but People and Services Do (unpublished report). DSI (The Danish Council of Organisations of Disabled People). (2007) Country Strategy Paper Uganda 2007–2011 (unpublished report). Copenhagen: The Danish Council of Organisations of Disabled People. Finlay, W.M.L., Walton, C. and Antaki, C. (2008) Promoting Choice and Control in Residential Services for People with Learning Disabilities. Disability and Society 23 (4): 349–360. Foucault, Michel. (1963) The Birth of the Clinic. London: Routledge. Frediani, A.A. (2010) Sen’s Capability Approach as a Framework to the Practices of Development. Development in Practice 20(2): 173–187. Jenkinson, J.C. (1993) Who Shall Decide? The Relevance of Theory and Research to Decision Making by People with an Intellectual Disability. Disability, Handicap and Society 8(4): 361–375. Jung, K.E. (2011) Chronic Illness and Educational Equity: The Politics of Visibility. In K.Q. Hall (ed.) Feminist Disability Studies. Bloomington and Indianapolis: Indiana University Press, 263–286. Katende, Phoebe, Mwesigye, James and Ssenogga, Martin. (2019) The Impact of Political Representation of Persons with Disabilities in Promoting Inclusion of Persons with Disabilities in Government Structures, Programmes, Policies and Other Legal Instruments in Uganda (unpublished study report). Katsui, H. (2012) Disabilities, Human Rights and International Cooperation: Human RightsBased Approach and Lived Experiences of Uganda Women with Disabilities. Publication Series No. 8. Helsinki: The Center for Human Rights of Persons with Disabilities. Knudsen, S.V. (2006) Intersectionality – A Theoretical Inspiration in the Analysis of Minority Cultures and Identities in Textbooks. In Eric Bruillard, Bente Aamotsbakken, Susanne V. Knudsen and Mike Horsley (eds) Caught in the Web or Lost in the Textbook. Utrecht: International Association for Research on Textbooks and Educational Media, 61–76. Available at http://www.caen.iufm.fr/colloque_iartem/p df/knudsen.pdf (accessed 13 February 2012). Landman, T. (2006) Studying Human Rights. London: Routledge. Lang, R. and Murangira, A. (2009) Disability Scoping Study: Commissioned by DFID Uganda. Available at http://www.ucl.ac.uk/lc-ccr/downloads/scopingstudies/ dfid_ugandareport (accessed 10 March 2012). Legal Action for Persons with Disabilities Uganda. (2012) Petition by the Disability Movement to the Parliament of Uganda for the Amendment of Laws and Regulations Providing for the Electoral Procedures for Parliamentary and Local Council Representatives of Persons with Disabilities (unpublished).

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Mawa, M. (2003) Human Rights and Development in Uganda: Reflections on the Constitutional Provisions of the Right to Development. Available at http://www. crvp.org/book/Series02/II-8/chapter_ix.htm (accessed 19 December 2005). Millward, H., Ojwang , V.P., Carter , J.A. andHartley , S. (2005) International Guidelines and the Inclusion of Disabled People. The Ugandan Story. Disability and Society 2(2): 153–167. Ministry of Finance. (2008) Disability and Poverty in Uganda: Progress and challenges in PEAP implementation 1997–2007, National Report. Kampala: Ministry of Finance, Planning and Economic Development of Uganda. Morris, J. (1998) Citizenship, self-determination and political action: the forging of a political movement. A speech in Citizenship and Disability Conference in February 1998. Sydney, Australia. Available at http://www.leeds.ac.uk/disability-studies/archi veuk/morris/disabled%20people%20and%20citzenship.pdf (accessed 26 January 2012). Ndeezi, A. (2004) The Disability Movement in Uganda: Progress and Challenges with Constitutional and Legal Provisions on Disability. Kampala: Oscar. OCHA (Office for the Coordination of Humanitarian Affairs). (2010) Uganda. Available at http://ochaonline.un.org/ocha2010/uganda.html (accessed 9 March 2012). OHCHR. (1996–2019) Key Concepts on ESCRs – Are Economic, Social and Cultural Rights Fundamentally Different from Civil and Political Rights? The Fact Sheet No. 33. Available at https://www.ohchr.org/EN/Issues/ESCR/Pages/AreESCRfundamenta llydifferentfromcivilandpoliticalrights.aspx (accessed 31 October 2019). Oliver, M. (2002) Using Emancipatory Methodologies in Disability Research. Paper presented at the First Annual Disability Research Seminar, Dublin, 3 December 2002. Oliver, M. (1997) Emancipatory Research: Realistic Goal or Impossible Dream? In C. Barnes and G. Mercer (eds) Doing Disability Research. Leeds, UK: Disability Press. Pleyers, G. (2010) Alter-Globalisation: Becoming Actors in the Global Age. Cambridge: Polity. Robb, A. (2012) Towards Strengthening the Rights of Persons with Psychosocial Disabilities in Africa. Cape Town: The Pan African Network of People with Psychosocial Disabilities. Available at http://www.scribd.com/doc/91999763/Strengthening-th e-Rights-of-People-With-Psycho-Social-Disabilities-in-Africa (accessed 15 May 2012). Seppänen, S. (2005) Possibilities and Challenges of the Human Rights-Based Approach to Development. The Erik Castren Institute Research Reports 17/2005. Helsinki. Uganda Disability Fraternity. (2007) Five-Year HIV/AIDS Strategic Plan 2007/2008– 2011/2012 (unpublished report). Uvin, P. (2004) Human Rights and Development. Bloomfield, CT: Kumarian Press. Walmsley, J. (2001) Normalisation, Emancipatory Research and Inclusive Research in Learning Disability. Disability and Society 16(2): 187–205. Woods, A.K. (2010) A Behavioral Approach to Human Rights. Harvard International Law Journal 51(1) Winter: 51–112.

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Changing the paradigm of disability from stigma to equity in university social work education in Kyrgyzstan1 Hisayo Katsui, Gulmira Kazakunova and Mina C. Mojtahedi

Introduction Discourse on disability in many parts of the world, especially in the global North, has been historically predominated by a medical approach where persons with disabilities are considered abnormal or deviant, and/or they have been marginalized (Oliver, 1990). With such a reductionist approach, persons with disabilities have been stigmatized (Goffman, 1963, 2017) due to the difference in social contexts (Coleman-Brown, 2017), and opportunities for people with disabilities to participate in society are limited compared with peers without a disability (WHO and World Bank, 2011). A relatively new academic discipline, Disability Studies, has been established by the disability rights movement. This introduced an alternative understanding of disability, namely the social model of disability (Oliver, 1990; Finkelstein and French, 1993 etc.). This social approach gradually changed the paradigm to one in which the oppression of society is seen as the problem rather than the individual with a disability (e.g. Barnes, 1991; Shakespeare, 2018). The approach has been developed in parallel with a human rights-based approach to disability (Katsui and Kumpuvuori, 2008). The latter approach is embodied in the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD), of which the global disability movement played a large role in the development. In the human rights-based approach, human rights principles and ethical values such as participation, equality and non-discrimination, and self-determination are enshrined and central (Katsui, 2012). Although as many as 181 UN member states have ratified the CRPD today, full implementation is still not yet realized in these countries. The Kyrgyz government is one of the most recent countries to have ratified the CRPD. Nevertheless, Kyrgyzstan still has a strong legacy from the Soviet Union, which widely implemented a policy of segregating persons with disabilities from society. The majority of research in the field of disability has been conducted in the context of the global North (Grech and Soldatic, 2016: Grech, 2011: Katsui, 2012). Bell (2017: 406) criticizes this phenomenon and labels it “white disability studies”. Although there is a growing body of literature investigating the historical, cultural and local context of disability in different geographic

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locations, as well as an increasing number of authors from the Global South (e.g. Watermeyer et al., 2019) as well as Global North authors writing in collaboration with authors from the Global South (Grech and Soldatic, 2016; Chataika, 2018), there are still gaps in evidence from countries in the Global South (Grech and Soldatic, 2016; Katsui, 2012). Thus, the understanding of disability and persons with disabilities is generalized to apply also to the Global South. Grech refers to this as “myths” (2011: 89), and more detailed accounts of disability in the Southern context are called for. As for Kyrgyzstan, there is limited research investigating disability (Hallberg, 2016; Alybaeva, 2007; Katsui, 2005). Existing literature on disability primarily focuses on the social problems faced by persons with disabilities, such as segregation, education, employment and family. There is a paucity of literature on ethics and values related to disability in the provision of public service, particularly the social services sector, despite this being a sector that directly impacts the realization of rights of persons with disabilities. For example, social work – a discipline and profession that aims at enhancing the wellbeing of individuals – risks further marginalizing persons with disabilities if social work relies on a reductionist approach or as a response to deficits rather than using a more holistic approach based on participation, social integration and equal citizenship (Hiranandani, 2005; French Gilson and DePoy, 2002; Meekosha and Dowse, 2007). Morgan (2012: 218) suggests that such a holistic approach, namely disability studies, is transformative in social work education by “evaluating the extent to which societal structures, processes and cultures are disabling and the identifying strategies to remove these barriers and promote more inclusive environments and practices”. The main aim of this chapter is to tease out the historical and deeply rooted ethical standards, spirituality and social values that have long supported the social service system in Kyrgyzstan, which, today, faces pressure to align with the Convention. This chapter focuses on social work as an example of public service where ethical standards and social values are of utmost importance for ensuring the equity of persons with disabilities. The data is based on an intervention conducted as part of the EU Social Protection Systems Programme (EU-SPS) in Kyrgyzstan between 2017 and 2018 and its follow-up survey. Thirty university lecturers participated in two or three trainings in the framework of the programme and provided feedback after each training. Six persons with disabilities, who are representatives of crossdisability organizations of persons with disabilities, were recruited to be trainers. These trainers were interviewed both individually and in a group, and they completed feedback surveys during the course of the programme. The interviews were held a few times per trainer with a disability between these trainings, often in the evenings or in the mornings, to reflect upon their learnings, learnings of the university lecturers, and perceptions on disabilities. They took between 30 minutes and one hour. In addition, a follow-up, anonymous survey was completed by the university lecturers during the summer of 2019 in order to collect more information on spirituality, ethical

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standards and social values. Ten participants completed the survey. These data were analysed with thematic content analysis technique to highlight and support some of the arguments in this chapter. This chapter first investigates the conventional ethical standards, spiritual explanations and social values related to disabilities within the Kyrgyz social protection system and social services. We elaborate on the Kyrgyz context of the societal ethics, spirituality and values around disability in the Kyrgyz university education for social workers. Second, we analyse the transformation of the perception of disability among the university lecturers. We conclude this chapter with a discussion on the negotiation between a charity-based approach that reinforces the stigmatization of disability and a human rights-based approach that promotes paradigm change, and try to present implications of the study beyond Kyrgyzstan and common Kyrgyz practices.

The Kyrgyz context: Understanding disability through spirituality and the Soviet legacy in Kyrgyzstan Kyrgyzstan is an interesting country where social customs reflect an intersection of Islamic and Soviet influences. This section of the article analyses the spiritual influences, which are largely from the Islamic religion. Most of the population is Muslim, although Islam is not a national religion in Kyrgyzstan. Most of the research participants mentioned the impact of the Islamic religion on their understanding of disability and their behaviour towards persons with disabilities. Research participants 7, 8 and 9 mention that disability is considered the result of sin committed by the person with a disability, their parents and/or relatives, and, thus, a form of curse or punishment by God. Persons with disabilities are pitied (research participant 6), which is manifested in charity and donations by people without a disability to persons with disabilities. This is viewed as a virtue in their religion (research participants 5, 6, 7, 9, 10). In this spiritual understanding of disability, persons with disabilities are positioned as a hierarchically lower group of people than others in society and as objects of charity. When it comes to the Soviet influence on the conceptualization of disability, the following interview statement exemplifies the extent to which it has affected persons with disabilities. The USSR didn’t respect the law or the rights of people. People were not the central focus then. For instance, the International Year of Disabled People of the United Nations was not publicized but was covered up in the Soviet Union. Instead we were told, “There are no disabled people”; “There is no problem”. (Uzbek person with disability in an urban area, cited in Katsui, 2005: 43) Of course, this does not literally mean that there were no persons with a disability in the former Soviet Union. But rather, it means that persons with

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disabilities were excluded in the Soviet ideology and thus had no place in society. There were a few exceptions among persons with disabilities who were well educated and employed. However, positive cases of inclusion and empowerment among persons with disabilities remain in the minority. Due partially to Soviet ideology, ableism (McRuer, 2006) was a dominating value in the Soviet time, in which all citizens were expected to work and uphold the ideology of communism. Depending on their impairment, persons with disabilities were categorized into three groups. This categorization system was used primarily for those who were temporarily sick or injured and who could return to work after medical treatment and rehabilitation. Thus, people with disabilities were expected to be cured after treatment and rehabilitation, despite the fact that their impairments were a permanent condition. Nevertheless, they were expected to recover after treatment so that they were able to work again. This “equal treatment for all” policy rather than “equal opportunities for all” was reinforced by the categorization system. This medical approach to disability in the form of defectology was predominant in the Soviet Union. According to defectology, persons with disabilities were often considered to be “abnormal”, first, because they were not healthy and, second, because they were not cured after receiving treatment. In the Soviet Union, the concept of “invalid” was introduced to describe those persons with disabilities who were not considered employable and who were sick. Research participant 8 recalls, “Until recently, the ‘medical model of disability’ was dominant, in which disability was regarded as a purely medical issue, referring to disability as only the individual’s problem and requiring only medical intervention.” On the one hand, the Soviet social protection system for persons with disabilities was highly sophisticated in providing services such as segregated boarding schools for children with disabilities and institutions for adults with disabilities, rehabilitation and medical treatment, medications, recreation and monetary compensation. On the other hand, the very same system segregated persons with disabilities and maintained an unethical division between persons with and without a disability. Therefore, because persons with disabilities were unseen and hidden, either institutionalized or isolated at home, society came to perceive that there were no persons with a disability. In this way, many persons with disabilities were excluded from society, and exclusion was normalized in recent history. As a result, prejudice, stigma (Goffman, 1963, 2017) and physical inaccessibility still remain a major Soviet legacy in the lives of persons with disabilities in former Soviet states such as Kyrgyzstan (Katsui, 2005). Today 2.8% of the population of Kyrgyzstan are categorized as adults and children with disabilities according to the population census of 2015. The number has been steadily increasing over the years, which is nevertheless far from the 15% that the World Report on Disability (WHO and World Bank, 2011) indicates based on a large-scale collection of scientific evidence. The institutionalization of children and adults with disabilities is widely practiced

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still today (UNICEF, 2011), while many of those staying at home do not receive proper education and thus subsequent employment opportunities. Although local organizations of persons with disabilities advocate for the human rights of persons with disabilities, the negative attitudes of both persons with and without a disability that is based on a spiritual conceptualization of disability and the Soviet legacy are still a big challenge.

Social protection programmes for persons with disabilities in Kyrgyzstan The social protection system in the Kyrgyz Republic remains strongly influenced by social ethics and values based on spirituality as well as on the Soviet legacy. This is manifested in a reliance on welfare services, direct cash transfers and institutional care for vulnerable members of society, as mentioned above. Persons with disabilities continue to be divided into three categories: first, second and third categories depending on the severity of their impairment and the ability to work. For instance, wheelchair users and blind persons are considered to be unable to work and so are categorized in the first group. Deaf persons belong to the third category and are considered to be able to work in occupations such as carpentry or shoemaking. Persons with disabilities receive a monthly disability pension, which however is too small to meet the average daily expenses, and thus persons with disabilities become financially dependent on their families and relatives. Social services include home visits from community-based social workers (2,760 home-visit service users in 2017), who help with household chores and provide hot meals, and the availability of special institutions (2,325 inhabitants in institutions in 2017). Consequently, public services still continue to perpetuate the segregation and isolation of children and adults with disabilities either in institutions or at home, instead of supporting them to be part of society on an equal basis with others. Social justice for persons with disabilities is too often not realized (Bickenbach, 2009: 105–110), and persons with disabilities are not provided the same opportunities as their peers without a disability. This means in practice that there is no place for persons with disabilities to make decisions about their own lives, for example, on what to eat, when food is provided by community-based social workers. In this way, many persons with disabilities continue to be passive and isolated from society. The research participants described this as due to the social ethics and values perpetuating the lower status of persons with disabilities in society. Certain reforms have taken place over the past 20 years since independence, but the intention of the government to establish a modern social protection system is complicated by the need to dismantle the current set of measures before establishing new ones. For instance, in the case of disability services, a number of institutions for both children and adults with disabilities are planned to be dismantled in order to realize the rights of persons with disabilities as stipulated in Kyrgyz legislation. At the same time, new types of services that support children and adults with disabilities to live in the community

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must be developed to replace the services provided through institutions. A representative of an organization of persons with disabilities has pointed out that the legal illiteracy of young persons with disabilities is a major problem, since many do not know what benefits they are entitled to, and how and where to get them (Interviewee 23, cited in Katsui, 2018: 4). The ideology of independent living based on human rights principles and ethical values is not well understood or known by either duty-bearers or rights-holders. In Kyrgyzstan the term “social worker” is currently used to describe a professional providing many levels of social work and social protection. Social workers work at one of two public service administrative levels: village selfgovernment community workers and district (rayon) social workers. The duties of the village community worker include the delivery of hot meals, services at home such as cleaning and washing clothes, and tasks such as paying bills. These services are delivered to persons living alone who have difficulties leaving their home, for instance, because of mobility limitations. Village community workers serve 12–14 elderly persons or persons with disabilities in urban areas, 10–12 in rural areas and 8–12 in remote, harder-to-reach areas. The duties of the district social worker are to monitor the delivery of services and provide annual reports on the services provided. In addition, the district social worker is responsible for identifying persons in need of social services, assessing their needs and registering them for services. Currently, approximately 1,000 village self-government community social workers work in Kyrgyzstan, of which 250 are specialized in child protection, including the protection of children with disabilities. Their salary is rather low (5500 KGD = 80 USD/month), which leads to a lack of interest among university graduates to select social work as their degree, especially in urban areas where the cost of living is high. This in turn means that often unqualified employees fill social worker positions. In general, the turnover for social workers is high, especially in urban areas. However, the high unemployment rate in rural areas motivates social workers to stay in their profession and provides them employment in their home localities. A major problem is that social workers are not trained in disability-related issues and are not familiar with the social model of disability or a human-rights based approach and the application of these to social work. Today, universities that provide social work as an academic discipline are given the responsibility by the government to educate social workers in independent living principles for persons with disabilities in the community. Moreover, the Kyrgyz government enacted a new law in 2018 introducing new professions, including personal assistants, physiotherapists and occupational therapists, with the aim of supporting persons with disabilities to live in the community. In other words, training for social workers will shift from reinforcing marginalization towards providing services that support persons with disabilities to live in the community, now that the CRPD has finally been ratified by the Kyrgyz government. However, universities lack the capacity to apply the human rights-based approach in social work because their teaching

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approaches focus on social values and ethical standards in conjunction with the aforementioned spirituality that undermines the social model and human rights-based model of disability.

EU Social Protection Systems Programme in Kyrgyzstan and its outcomes The Kyrgyz Ministry of Labour and Social Development requested help from the Finnish government to build the capacity of social workers to apply the social model of disability. In response to this request, the EU Social Protection Systems Programme (EU-SPS) – a global programme designed to support the government’s capacity to develop inclusive and sustainable social protection systems in ten developing countries – was implemented in Kyrgyzstan in 2017–2018. After the legal change approving new professions such as personal assistants, physiotherapists and occupational therapists, a working group, including a representative of a cross-disability organization of persons with disabilities, was established in the beginning of 2018 to discuss these new professions. The Kyrgyz universities that provide social work as an academic discipline are responsible for creating curricula for the new social work professions. To support the universities, the EU-SPS intervention trained 30 university lecturers of social work, including the members of the aforementioned working group, on disability rights and the social model of disability, and more broadly on disability studies. The Kyrgyz curriculum for social work has been based on the medical approach to disability where disability has been taught in the form of defectology and the ontology of impairment (Vehmas and Mäkelä, 2009; Shakespeare, 2006). My ideas about disability before the trainings were heavily coloured by the medical point of view. Because I believed that people with disabilities should be cared for in special institutions, where special conditions are created for them. (Research participant 6) Furthermore, the background of some of the university social work lecturers is in medical sciences, which further promotes a medical approach to disability. Other aspects including social and human rights-based approaches to disability were included to a limited extent, as the curriculum focuses more on managing and supervising social workers than working at the grassroots level with service users such as children and persons with disabilities. In the EU-SPS intervention in Kyrgyzstan, the first consultation meetings and interviews took place in early 2017 to identify the precise needs of local university lecturers, social workers and the Ministry of Labour and Social Affairs. Based on the consultations, a curriculum was developed for the university social work programme. Thirty university social work lecturers were

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trained in the new disability studies curriculum in one-week intensive trainings sessions for trainers (ToT) in universities in Bishkek and Osh in late 2017. One further training session was held in Bishkek in early 2018, to which lecturers from both cities were invited. As an outcome of this ToT, a teaching module on disability inclusion that is specific to the Kyrgyz context was created. Since 2018, the trainees have been educating other university lecturers, social workers and university students in the subject using the new teaching modules. A final wrap-up meeting took place at the end of 2018 in Bishkek, to which representatives from both cities as well as relevant other stakeholders were invited. Data was collected throughout the trainings from participatory observation and personal and group interviews. Oral feedback was also continuously noted during the interactive and participatory trainings. For instance, several questions were asked during the trainings, after which the answers were collected and analysed. After each training, a feedback questionnaire was completed by the participants to determine what they had learned, what areas required further improvement, and what the participants would like to further develop. Furthermore, an anonymous and voluntary survey was conducted in the summer of 2019 as a follow up. Only ten participants voluntarily completed the survey, despite regular reminders. The basis of the new curriculum produced in the EU-SPS intervention was that disability is not an ontological inferior condition; instead the curriculum focused on the relationship between individuals and society and a holistic understanding of disability as a social phenomenon in which persons with disabilities are equal members of society. Local representatives of cross-disability organizations of persons with disabilities, who are persons with disabilities themselves, were guest lecturers teaching disability studies to the Kyrgyz university lecturers based on their personal and collective experiences. They were representatives of their cross-disability organizations. That is, “experts by experience” (Sosnet, 2017: 8) were utilized as a local resource for the disability inclusion social work training. The added value of “experts by experience” is that trainees could learn from the lived experiences of the guest lecturers and that the inclusion of persons with disabilities as lecturers exemplifies the equal relationship between persons with and without a disability. A Kyrgyz university education pertaining to disability prior to the trainings reflected the deeply rooted social values, ethical standards and spirituality related to disability. All of the interviewed social workers and university lecturers confirmed that training on disability in general, and disability rights in particular, is quite rare and very limited. Therefore they tend to unknowingly reinforce the stigma, though with “a good heart”, as the social workers themselves put it. After the first trainings, the lecturers’ perceptions towards disability changed quite dramatically. At the beginning of the first one-week training in 2017, Kyrgyz university lecturers were asked to list words that are related to disability. They associated “disability” with words such as impairments, dependence, limitations, physical restrictions, “not having a full life”, wheelchair and medical

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care. At the end of the training, the same question was asked, and the words associated with disability included discrimination, “we can change”, ethics, equal opportunity, mainstreaming and identity. These words epitomize their profound change in understanding disability in Kyrgyz society. When different approaches to disability were introduced to them, the university lecturers themselves recognized that they had internalized the historically and socially predominant ethical standards, values and spiritual understanding of disability in which children and adults with disabilities are objects of both charity and medical interventions. The research participants reflected on the change as follows: At the moment in Kyrgyzstan rights as well as service provisions for people with disabilities are poorly implemented. Ignorance leads to inaction on the part of the public sector as well as the general public… After the training, I began to believe deeply that … [we can] increase our knowledge about disability and train young people to better understand it (disability). (Research participant 5) I think that the rights of people with disabilities to equality and full inclusion in society, inclusiveness, must now be recognized on a large scale. This approach to disability, based on human rights, requires a complete change in the traditional attitude towards people with disabilities. After the trainings, I am even more convinced that the outdated practices of paying benefits, medical rehabilitation and institutionalization needs to be carefully reviewed. (Research participant 8) After two years of these ToTs, with the great help of the university lecturers and local disability activists, a set of teaching modules for disability inclusion was produced to fit the specific needs of the Kyrgyz context. As an outcome of this EU-SPS programme, the trainees started to teach disability not only through defectology but also with human rights principles and ethical values on inclusion. A new element in the revised teaching modules was that the local guest lectures who were persons with disabilities were treated as important and equal colleagues. In this way, the university lecturers changed their teaching curriculum to incorporate new values and beliefs to promote the inclusion of children and adults with disabilities instead of reinforcing negative stigma.

Concluding remarks: discussing the paradigm change from stigma to equity This chapter tried to shed light on the historical and deeply rooted ethical standards, spirituality and social values that have long supported the social service system in Kyrgyzstan, which is currently under the pressure to change. As Vehmas and Mäkelä (2009:52–53) argue,

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The first and right thing to do would appear to be to change the social arrangement of the context, if possible. However, social structure, practices, arrangements, value structures and so on are notoriously difficult and slow to change. This is quite understandable since they are collectively created and maintained, and also historically deep-rooted. The outcomes of the EU-SPS verified that such interventions do not automatically translate into a large social change in favour of persons with disabilities, as the university training of social workers is only a small part of the public service production chain. The “collectively created and maintained” structure is generally hard to be deconstructed, as Vehmas and Mäkelä (2009:52–53) rightly put it. When the statutory structure of social protection systems as well as society do not facilitate the equity of children and adults with disabilities, a charity-based approach is often the way in which children and adults with disabilities obtain the necessary support. For instance, community-based social workers of the public sector continue to provide standardized help to children and adults with disabilities in a nonemancipatory way without taking into account the decisions of individuals with disabilities. A charity-based approach has been heavily criticized (cf. Barnes, 1991: Murphy, 2000). Katsui (2012: 23–24) summarizes the criticism against it as follows: Charity organisations and a charity-based approach have historically served to innovatively fill the gaps of existing needs. Nevertheless, this approach has been heavily criticised because it gives the impression that the problems have been solved, it does not challenge the fundamental structure, which is the root cause of the situation, and further, because of the mechanisms inherent in it, which takes away the decision-making power and/or ownership from the beneficiaries. A charity-based approach is prevalent not only among charity organizations but also in the public sector in Kyrgyzstan and beyond. Many children and persons with disabilities are dependent on charities for their survival, especially when they are isolated and made passive (Katsui, 2005). When the capacity of many grassroots persons with disabilities is extremely weak, they themselves often become part of the mechanism reinforcing a charity-based approach and the stigma attached to it. They often internalize a negative image of oneself and remain passive. On the other hand, the general public, including social workers of the public sector, perceive that charity is very good, which is an “observed paradox” (Shakespeare, 2006:153). In other words, “Charity becomes an indispensable aspect of realities of many persons with disabilities” (Katsui, 2012:135). The change in the social environment of charity that carries the stigmatic values thus is a priority. Ikäheimo (2009: 88) argues:

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The social environment, including the presented social values, ethical standards and spirituality, continues to be undermined by many governments, including the Republic of Kyrgyzstan, because one of the most influential, though usually unstated, assumptions of social policy is that “it is always cheaper, more efficient, and publicly acceptable to provide resources that respond to individual functional deficits, than to modify the physical and social environment in which they live” (Bichenbach, 2009:110). One of the modest but meaningful outcomes of the EU-SPS is the established collegial relationship between university lecturers of social work and local disability activists. The created teaching module encompasses guest lecturers of local disability activists as “experts by experiences” (Sosnet, 2017: 8). This exercise entails changes in the social value system: moving away from stigma that is profoundly based on spirituality and the Soviet legacy towards a more equal relationship between persons with and without a disability. The guest lecturers with disabilities are no longer objects of charity but prominent lecturers in higher education. This element has the potential to trigger the intended paradigm and value change from a charity-based approach to a human-rights based approach. As the social environment in Kyrgyzstan is largely based on a charity-based approach to start with, it is high time to pay closer attention to the values, ethics and spirituality behind existing support mechanisms for children and adults with disabilities so as to understand the root causes of the status quo. As this study shows, investigation of the social and historical background in terms of ethical standards, social values and spirituality is helpful in understanding the persistent discriminatory reality faced by persons with disabilities in any context and further provides opportunities to build new ways forward. This finding has wider implications not only in Central Asian countries that share a similar historical background with Kyrgyzstan but also in other parts of the world. The necessity of holistic disability studies and accommodation in the social work discipline has started to be addressed by scholars in different contexts (Morgan, 2012; Holler and Werner, 2018; Sniatecki et al., 2018). The ratification of the CRPD by 181 countries has meant that many countries face a variety of transformative challenges when social values and ethical standards do not comply with the principles of the CRPD. The evidence presented in this chapter contributes to this worldwide discourse on social change in disability inclusion and provides a practical example of change established in higher education institutions in Kyrgyzstan.

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Note 1 This article manuscript was accepted to the Public Administration and Development Journal, and will be published in 2020 as part of the Special Issue, “Public Service Ethics, Values and Spirituality: Challenges and Opportunities for Developing and Transnational Countries”. Katsui, H., Kazakunova, G. and Mojtahedi, M. C. (2020) Changing the Paradigm of Disability from Stigma to Equity in University Social Work Education in Kyrgyzstan. Public Administration and Development 2020, 1–7. DOI:10.1002/pad.1875

References Alybaeva, N. (2007) Report on the Results of Social Research on the Theme: Peculiarities of the Disabled-Women’s Gender State in Kyrgyz Republic. Karakol: Ravenstvo. Barnes, Colin. (1991) Disabled People in Britain and Discrimination. London: Hurst and Company. Bell, Chris. (2017) Is Disability Studies Actually White Disability Studies? In Davis Lennard (ed.) The Disability Studies Reader. London: Routledge, 406–415. Bickenbach, Jerome. (2009) Disability, Non-Talent and Distributive Justice. In Kristjana Kristiansen, Simo Vehmas and Tom Shakespeare (eds) Arguing about Disability: Philosophical Perspectives. London: Routledge, 105–123. Chataika, Tsitsi. (ed.) (2018) The Routledge Handbook of Disability in Southern Africa. London: Routledge. Coleman-Brown, Lerita M. (2017) Stigma: An Enigma Demystified. In Davis Lennard (ed.) The Disability Studies Reader. London: Routledge, 145–159. Finkelstein, Vic and French, Sally. (1993) Towards a Psychology of Disability. In John Swain, Vic Finkelstein, Sally French and Michael Oliver (eds) Disabling BarriersEnabling Environments. London: Sage Publications. French Gilson, Stephen and DePoy, Elizabeth. (2002) Theoretial Approaches to Disability Content in Social Work Education. Social Work Education 38(1). 153–165. Goffman, Erving. (1963) Stigma. London: Simon and Schuster. Goffman, Erving. (2017) Selection from Stigma. In Davis Lennard (ed.) The Disability Studies Reader. London: Routledge, 133–144. Grech, Shaun. (2011) Recolonising debates or perpetuated colonality? Decentring the spaces of disability, development and community in the global South. International Journal of Inclusive Education 15(1), 87–100. Grech, Shaun and Soldatic, Karen (eds) (2016) Disability in the Global South. Cham, Switzerland: Springer. Hallberg, Pekka. (2016) Rule of Law: Prospects in Central Asia, Rural Areas and Human Problems. Helsinki: Edita. Hiranandani, Vanmala. (2005) Towards a Critical Theory of Disability in Social Work. Critical Social Work 6(1). Available at http://www1.uwindsor.ca/criticalsocia lwork/towards-a-critical-theory-of-disability-in-social-work Holler, Roni and Werner, Shirli. (2018) Perceptions Towards Disability Among Social Work Students in Israel: Development and Validation of a New Scale. Health and Social Care 26(3), 423–432. Ikäheimo, Heikki. (2009) Personhood and the Social Inclusion of People with Disabilities: A Recognition-Theoretical Approach. In Kristjana Kristiansen, Simo

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Vehmas and Tom Shakespeare (eds) Arguing about Disability: Philosophical Perspectives. London: Routledge, 77–92. Katsui, Hisayo. (2005) Towards Equality – Creation of the Disability Movement in Central Asia. Helsinki: Helsinki University Press. Katsui, Hisayo. (2012) Disabilities, Human Rights and International Cooperation: Human Rights-Based Approach and Lived Experiences of Ugandan Women with Disabilities. Publication Series Number 8. Helsinki: The Center for Human Rights of Persons with Disabilities. Katsui, Hisayo. (2018) An Impact Assessment Study of Abilis Work in Kyrgyzstan between 2002 and 2018 (unpublished report). Katsui, Hisayo and Kumpuvuori, Jukka. (2008) Human Rights-Based Approach to Disability in Development in Uganda: A Way to Fill the Gap between Political and Social Spaces? Scandinavian Journal of Disability Research 10(4), 227–236. McRuer, Robert. (2006) Crip Theory: Cultural Signs of Queerness and Disability. New York: New York University Press. Meekosha, Helen and Dowse, Leanne. (2007) Integrating Critical Disability Studies into Social Work Education and Practice: An Australian Perspective. Practice 19(3), 169–183. Morgan, Hannah. (2012) The Social Model of Disability as a Threshold Concept: Troublesome Knowledge and Liminal Spaces in Social Work Education. Social Work Education 31(2), 215–226. Murphy, Brian K. (2000) International NGOs and the Challenge of Modernity. Development in Practice 10(3&4), 330–347. Oliver, Michael. (1990) The Politics of Disablement. London: Macmillan. Shakespeare, Tom. (2006) Disability Rights and Wrongs. London: Routledge. Shakespeare, Tom. (2018) Disability: the Basics. London: Routledge. Sniatecki, Jessica L.Pelz, Jessica A. and Gates, Trevor G. (2018) Human rights advocacy for students with disabilities: challenging stigma and promoting opportunity in social work education. Journal of Human Rights and Social Work 3(4), 183–190. Sosnet. (2017) Social Work Education in Finland: Courses for Competency. National University Network for Social Work (Sosnet). Rovaniemi. Available at http://www. sosnet.fi UNICEF. (2011) At Home or in a Home? Formal Care and Adoption of Children in Eastern Europe and Central Asia. Brussels: UNICEF. Vehmas, Simo and Mäkelä, Pekka. (2009) The Ontology of Disaiblity and Impairment: A Discussion of the Natural and Social Features. In Kristjana Kristiansen, Simo Vehmas and Tom Shakespeare (eds) Arguing about Disability: Philosophical Perspectives. London: Routledge, 42–56. Watermeyer, Brian, McKenzie, Judith and Swartz, Leslie. (eds) (2019) The Palgrave Handbook of Disability and Citizenship in the Global South. Cham, Switzerland: Palgrave Macmillan. WHO and World Bank. (2011) World Report on Disability. Geneva: WHO.

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The global disability rights realization in Nepal and Tanzania The right to water and sanitation Nathaly Guzmán Figueroa and Hisayo Katsui

Introduction The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) has been ratified by 181 countries, which globally is a ‘major milestone’ (UN News Center, 2014). However, even in the era of the Convention, persons with disabilities in the Global South have too often been omitted from the practice of national and international development efforts (Lehtomäki et al., 2014; WHO and World Bank, 2011). Today, water and sanitation are one of the serious problems for many children and persons with disabilities in the Global South, even though considerable progress had been achieved in general by the end of 2015 (Wilbur and Jones, 2014; Groce et al., 2011; Jones and Reed 2005). First, the UN declared access to clean water and sanitation to be a human right in 2010 (UN News Center, 2010). That means duty bearers have the obligation to protect, respect and fulfil this human right. Second, one of the Millennium Development Goals (MDGs) to halve the number of people who do not have access to improved water sources was achieved even before the 2010 deadline (United Nations, 2013). Over 90% of the world’s population now has access to improved sources of drinking water (WHO, 2015). Third, the subsequent Sustainable Development Goals (SDGs) to be achieved by 2030 are more universal in nature with the motto of ‘leaving no one behind’. On the water, sanitation and hygiene (WASH) sector, the SDGs comprise objectives for guaranteeing availability and sustainable management of water and sanitation for all. Namely, gaining universal and equitable access to safe and affordable drinking water for all; gaining access to adequate and equitable sanitation and hygiene for all; and putting an end to open defecation, paying special attention to the needs of women and girls and those in vulnerable situations, are specific SDGs targets on the WASH sector (UNICEF, 2016). These goals follow the recommendations of the Joint Monitoring Programme (JMP) Working Group on Equity and Non-Discrimination (END), who called for more attention to the reduction and elimination of inequalities in the post-2015 agenda, and who proposed to measure progress not only in terms of numbers of people reached but in terms of inequality reduction (Albuquerque, 2015). Finally, the SDGs refer specifically to disability in seven targets and 11 indicators, whereas there was no mention of disability in the goals,

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targets and indicators of the MDGs. The implication is that disability and other disaggregated data would be collected to reduce overall inequalities. The access to improved water and sanitation is generally getting better for many, while leaving behind many others when 2.4 billion people still lack improved sanitation facilities, and 663 million people were still using unimproved drinking water sources in 2015 (UNICEF/WHO JMP, 2015). Even when there are latrines, they are not accessible to many children and adults with disabilities (Wilbur and Jones, 2014). That is, intra-household inequality is a valid aspect to investigate in further research (UNICEF/WHO JMP, 2015). This water and sanitation problem is of importance for girls and children with disabilities (Jones and Reed, 2005), as a lack of facilities is one of the many reasons for their exclusion from schools and from society altogether. More evidence-based research in this sector from the perspective of disability is needed (Groce et al., 2011). Based on on-going participatory research, in this paper, we first summarize survey findings to investigate current development practice of Finnish WASH actors including both non-governmental organizations and consulting companies implementing development projects in the field of WASH in the Global South. Second, we elaborate on the reality of the access to water and sanitation for persons with disabilities in both urban and rural areas in Nepal and those in urban informal settlements in Tanzania. These two parts formed the baseline data for this participatory research in which invisibility or little participation of persons with disabilities in the current development practice was verified. The third and main part of this paper describes the several methods of participatory research selected to contribute to filling the gap between the current universal goals and the reality. Lessons learnt from this participatory research are discussed and presented as a possible way forward.

Methodology The aim of this participatory research was to propose theoretical and practical ways to include persons with disabilities in WASH initiatives in the Global South so that their access to WASH services would increase and consequently inequality would be reduced. Similarly, based on lessons learnt during the research process, our aim is to recommend ways in which academia and practitioners in the field of disability and development could promote mutual learning more effectively and consciously. The University of Helsinki Ethical Review Board in Humanities and Social and Behavioural Sciences provided an ethical statement for the research in which it confirms that the study is ethically acceptable. The aim of using a participatory research approach is to increase the level of power that researched subjects, in this case people with disabilities, have in the investigation. Hence, the researchers acknowledge the specific knowhow that researched subjects have about their own lives, and use different means to increase their level of participation in the various stages of the study, so that

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these subjects can play an active role in the research (Katsui and Koistinen, 2008; Cooke and Kothari, 2002; Chambers, 1997; Barnes et al., 1999). In disability studies, participatory research is expected to empower the research participants and to produce knowledge that will benefit the researched subjects (Finkelstein, 1999; Walmsley and Johnson, 2003). This is also proclaimed by the emancipatory research approach, the aim of which is to promote the interests of the researched groups, and to produce knowledge to challenge the existing discriminating structures (Finkelstein, 1999; Walmsley and Johnson 2003: 38). This approach is also recognised as a form of political action (Walmsley, 2001). In our study, we embraced elements of both approaches. We investigated the experiences of persons with disabilities when accessing WASH services in Nepal and Tanzania through personal interviews, focus group discussion, and observation, while some of them participated more actively in the research process. We visited Nepal in December 2014, before the earthquake, and Tanzania in October–November 2014. In Nepal, interviews and a focus group discussion were held with representatives of ten Nepalese organizations of persons with disabilities. Further interviews and observation were conducted on the bilateral Finnish–Nepalese Rural Water Supply and Sanitation Project in Pokhara, Western Nepal, which was selected as the project for 2016 in Finland. A blind Nepalese woman acted as research assistant and interpreter particularly with interviewees with a low level of education. In Tanzania, interviews were conducted with seven persons with disabilities living in Keko Machungwa, a slum area of Dar es Salaam. In addition, seven children with disabilities in a boarding school, local authorities, a local non-governmental organization (NGO) (Center for Community Initiatives), and one local community-based organization (PHAST Ujenzi) were also interviewed. Observation of WASH meetings and events was also conducted throughout the fieldwork. Interviews with people with disabilities mainly explored their experiences when accessing WASH facilities and when participating in WASH programmes. People with disabilities were also given the opportunity to provide suggestions on how to improve their access to WASH services. Moreover, local authorities, NGO and WASH programme representatives answered questions regarding the inclusion of persons with disabilities into their WASH activities, and the barriers and opportunities to make their initiatives more inclusive. All the data were transcribed and thematically analysed using qualitative content analysis technique, while carefully paying attention to the ethical issues such as voluntary participation, privacy and the right to withdraw at any time. Furthermore, we conducted a survey of nine Finnish stakeholders including consulting companies and civil society organizations that implement WASH projects and/or programmes in the Global South. This survey was sent by email to the identified stakeholders. The survey investigated their policy and practice of inclusive development, especially disability-inclusive development.

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For instance, interviewees were asked whether they had any guidelines to include persons with disabilities in their water and sanitation activities, and their experiences when working with this vulnerable population. In addition, the survey sought suggestions in order to develop a guidebook on inclusive WASH activities in the Global South. The authors thematically compiled and analysed answers with qualitative content analysis techniques by extracting the elements commonly mentioned by the informants. Information collected through personal interviews and meetings that were also held with some WASH and disability stakeholders and with some officials from the Finnish Ministry for Foreign Affairs also form part of the data. Subsequently, we have disseminated the findings and recommendations of our current study through several forms and actions such as policy papers, guideline publications, formal and informal meetings, seminars, training sessions, and academic conferences in collaboration with a range of stakeholders. These actions, both academic and non-academic, form the basis of our contribution to the field of inclusive development.

Persons with disabilities are largely invisible in WASH initiatives Both the survey findings and the fieldwork in Nepal and Tanzania verified the reality in which persons with disabilities are largely invisible in existing WASH efforts and thus their needs are almost fully dismissed when WASH facilities are built, and services provided. The survey revealed that most of the Finnish companies and organizations do not pay enough attention to the inclusion of persons with disabilities, regardless of the manuals on inclusion they prepare which primarily focus on other disadvantaged groups such as women and children. Finnish companies and organizations also expressed the need for concise manuals and guidelines to include persons with disabilities not only from the physical accessibility perspective, but also from the social and attitudinal point of view. Accessibility and availability of water and sanitation are vitally important, particularly in terms of social impact, in the lives of persons with disabilities (Wilbur and Jones, 2014) who are disproportionally poor and discriminated against in Nepal (Lamichhane et al., 2014) and Tanzania (Aldersey et al., 2011). Yet their needs are almost completely ignored in the planning, implementation, monitoring and/or evaluation of WASH activities in general. For instance, in Nepal, the law stipulates as follows: ‘Despite the commitments of the Government for promoting an inclusive, barrier-free and rights-based society for persons with disabilities by the enactment of National policy and plans of action on disability 2006, they are marginalized in all spheres of life’ (NFDN, 2013: 24). According to the Directive for Accessible Physical Infrastructure and Communication Services for People with Disabilities 2013, ‘all the public places and toilets inside them must be made accessible to people with disabilities’ (Government of Nepal, 2013). The translation of policies into practice is still an on-going process and at times too slow in progress due to the ingrained stigma carried by persons

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with disabilities. For example, ‘only 15–20% of persons with disabilities have the [disability identity] card’ partially because many still do not know about this card, while others cannot physically and/or financially access the local authority and medical centre, a visit required to obtain the card (blind OPD leader, personal interview 10 December 2014 at Kathmandu). Although there is a national census that identifies persons with different disabilities, persons with disabilities are not well identified in practice. Similarly, in Tanzania, many persons with disabilities are segregated by WASH campaigns used by authorities to spread information in the community without ensuring that such information reaches everybody. This reality was confirmed in an interview with a woman whose mother had a physical disability who said that ‘local leaders usually pass by to educate but it is mostly us [non-disabled people] in the household who get the information; my mom [with disability] is always inside the house’. This multiple exclusion translates into several barriers and challenges for persons with disabilities when accessing sanitation facilities. In the focus group discussion in Nepal, a leader of an OPD with a severe disability introduced some experiences of a woman with a disability: There was a woman who had to crawl from home to the toilet. The toilets are always outside homes because in Nepal, constructing toilets inside a home is considered to be dirty. It’s always outside living areas. She had to crawl all the way. When it rains, she gets all dirty. The tap was so high that she always had to ask for someone to help her. But all the dirt was stuck to her clothes and was already impossible to wash away. So nobody helped her. Even the family members did not want to sit near her because she was dirty. They kept her separately on the ground floor from other families. This is a striking example of a woman with a disability in a rural part of Nepal. (Focus group discussion on 7 December 2014 at Kathmandu) Likewise, people interviewed in Tanzania argued that they face many barriers when accessing toilets because facilities are usually far away, and access paths are uneven and full of obstacles (garbage, construction materials, etc.). Persons with physical and visual impairments usually take long time to reach toilet facilities due to the physical barriers. In addition, the people interviewed mentioned that once they reach the toilet, normally they had to crawl and get filthy because there is nothing to hold onto. All toilets in their areas are for squatting, and so there is no chance of using a chair to sit on. Moreover, these people feel very unsafe while using the facilities because there can be broken parts on the ground, and some other parts such as roof, door, and toilet slab, are missing. Usually there is no privacy because they need the help of another person to be able to relieve themselves. Furthermore, often there is no water for washing or flushing. During the rainy season, toilets are likely to flood, which affects the whole living area and creates the basis for disease and environmental pollution.

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Five main factors that explain the exclusion of many persons with disabilities from WASH initiatives were identified during the fieldwork. The first factor lies on the lack of knowledge about disability by stakeholders and the community, which partly relates to stigma, absence of persons with disabilities in community activities, and poor statistical data on disability (Groce et al., 2011; Taylor, 2009). In addition, the natural and physical environment is a crucial element that imposes additional barriers for persons with disabilities in accessing WASH services (Tesfu and Magrath, 2006; White et al., 2016; Norman, 2010). Moreover, there is a lack of budget and planning to ensure accessibility and reasonable accommodation. Furthermore, there is a lack of political support from local government to implement inclusive initiatives (Groce et al., 2011). Finally and most relevantly for all disability studies scholars, there are few interlinkages between academics and practitioners for mutual learning and for translating research findings into social impact. This challenge to exchange information among stakeholders relates partly to the first factor.

Information dissemination on inclusive WASH activities in the Global South: towards collaboration between academia and practitioners Although several factors that explain the invisibility of persons with disabilities in WASH programmes and projects have been identified in the literature (WEDC, 2015; Jones and Wilbur, 2014; WaterAid, 2012; Groce et al., 2011; Handicap International, 2008; Jones and Reed, 2005), local authorities, development organizations, and other practitioners, seem not to be aware of this information, and many of them have declared that there is a lack of literature on this subject. Therefore, a great number of publications that provide solutions and advice to include persons with disabilities in WASH initiatives too often remain unnoticed (e.g. WEDC, 2015; Alburqueque, 2014; Jones and Wilbur, 2014; Kynnys, 2014; Wilbur and Jones, 2014; WaterAid, 2012; WEDC and WaterAid, 2012; Handicap International, 2008; Jones and Reed, 2005), while practitioners often do not find out about the existence of academic findings. In addition to the academic research objectives, an aim of the present study was to propose ways to connect these actors, and to provide examples of actions that can be undertaken, in order to enhance collaboration between academia and implementers with a participatory research approach. After the fieldwork, therefore, the authors called on WASH and disability stakeholders to contribute to making necessary changes to this reality with the preliminary academic research findings. The researchers held regular meetings with Finnish OPDs and a WASH NGO, and decided to publish an easy-to-read handbook on inclusive WASH activities (Guzman et al., 2016) based on the expressed acute needs of the WASH project implementers and the persons with disabilities interviewed in both countries. They were particularly interested in tangible steps on both how to include persons with disabilities and how to physically accommodate their WASH-related needs with locally available materials without additional costs.

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The Finnish Ministry for Foreign Affairs, particularly its water advisor and advisor of marginalized groups, was also involved as a partner. The Ministry hosted a validation seminar of the handbook findings, inviting both WASH and disability stakeholders. The research findings presented in this chapter, are included in this handbook. The researchers also arranged an academic oneday-seminar on global justice inviting renowned global disability scholars and presented the findings of the research, while they now also teach this topic at university. More widely, the academic findings were distributed in the form of a keynote address at the Finnish Disability Studies Conference held in June 2016. After publication of the handbook, Finnish disability activists were trained in this topic to be the experts, while one training session was organised in Tanzania to explain the main content of this manual to the NGO and the community-based organizations who were interviewed in this research. The handbook was shared with Nepalese research participants with disabilities and WASH stakeholders. In brief, the knowledge created has been widely shared with relevant stakeholders including academics and practitioners in Finland and in the countries which were studied. Along with this on-going participatory research, the authors have had the opportunity to reflect on the necessary steps to make academic findings contribute to social change. Involving a range of stakeholders is crucial when implementing new approaches to reduce a multifaceted disability-related inequality such as the exclusion of persons with disabilities from WASH initiatives (Adjei-Amoako, 2016; Meshack, 2004; Rich et al., 2001). Concluding remarks Academic research might produce relevant findings which have not necessarily reached those who would benefit from them: not only to the persons with disabilities themselves (‘the researched’) but also to those who are stakeholders (Katsui and Koistinen, 2008; Katsui, 2009; Özerdem and Bowd, 2009; McTaggart, 1997). Having conducted several participatory research projects, it has become clear that conventional research-sharing forums such as academic publications and presentations at academic conferences are perhaps not enough, if the goal is to make both academic and social impact. When the aim of research in the discipline of disability studies and human rights studies is to contribute to a change in society in which persons with disabilities are not treated equally with others, it should perhaps be recommended that they collaborate with practitioners and OPDs to spread findings in alternative, accessible and informative ways not only for non-academics but also for relevant stakeholders in the Global South. It is also essential to apply a range of participatory research methods that can contribute to the engagement of stakeholders (McNiff, 2013; Hickey and Mohan, 2004; Greenwood, 1999; Greenwood, et al., 1993). Disability studies is increasingly facing this challenge to take human rights principles more seriously in the research work itself while discussing and arguing about disability rights.

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More studies are necessary regarding the situation of persons with disabilities in terms of their sanitary conditions and their meaningful participation in water and sanitation projects so as not to do harm but to improve the quality of life of persons with disabilities in the villages and communities in the Global South on an equal basis with others. This is a global challenge that also requires academic research to achieve the intended change. Certainly, the methodological issue as a lesson learnt from the participatory research carried out by the authors of this chapter, is a common challenge for many researchers who are the readers of this book. Therefore, more innovative research on participatory research and stakeholder engagement methods that are also applicable in the Global South is needed in disability studies to reduce inequalities on a global perspective. This topic will be further discussed in Chapter 11.

References Adjei-Amoako, Y. (2016). Promoting inclusive development in Ghana: disabled people’s and other stakeholders’ perspectives. Development in Practice 26(7): 865–875. doi:10.1080/09614524.2016.1210092 Albuquerque, Catarina de. (2014). Realising the Human Rights to Water and Sanitation. A Handbook by the UN Special Rapporteur. Retrieved from: https://www.susa na.org/en/knowledge-hub/resources-and-publications/library/details/2342?pgrid=1 Albuquerque, Catarina de. (2015). Safe and Sustainable Sanitation, Hygiene and Drinking Water Used by All. Retrieved from: http://www.wssinfo.org/fileadmin/user_ upload/resources/Information-Sheet-on-Post-2015-Eliminating-Inequalities-.pdf Aldersey, H.M. and Turnbull, H.R. (2011). The United Republic of Tanzania’s National Policy on Disability: A policy Analysis. Journal of Disability Policy Studies 22(3): 160–169. doi:10.1177/1044207310397877. Barnes, C., Mercer, G. and Shakespeare, T. (1999). Exploring Disability: A Sociological Introduction. Cambridge, UK: Polity Press. Chambers, R. (1997). Whose Reality Counts? Putting the First Last. London: Intermediate Technology Publications. Cooke, B. and Kothari. U. (2002). Participation: The New Tyranny? 2nd impression. London: Zed Books. DFID. (2004). Disability Knowledge and Research: Assessing Connection to DFID’s Poverty Agenda. Department of International Development at United Kingdom. Retrieved from: http://www.dfid.gov.uk/r4d/PDF/Outputs/Disability/PolicyProject_ IsabelOrtizReportFinal1.pdf Finkelstein, V. (1999). Doing Disability Research. Disability and Society 14(6): 859–867. Goffman, E. (1963). Stigma. Harmondsworth: Pelican. Government of Nepal. (2013) The Accessible Physical Structure and Communication Service Directive for People with Disabilities. Greenwood, D.J. (1999). Action Research. Philadelphia, PA: John Benjamins Publishing Company. Greenwood, D.J., Whyte, W.F. and Harkavy, I. (1993). Participatory Action Research as a Process and as a Goal. Human Relations 46(2): 175. doi:10.1177/001872679304600203 Groce, N., Bailey, N., Lang, R., Trani, J. and Kett, M. (2011). Water and Sanitation Issues for Persons with Disabilities in Low- and Middle-Income Countries: A

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Literature Review and Discussion of Implications for Global Health and International Development. Journal of Water and Health 9(4): 617–627. doi:10.2166/ wh.2011.198 Groce, N. and Bakshi, P. (2009). Illiteracy among Adults with Disabilities in the Developing World: An Unexplored Area of Concern. Working Paper Series No. 9. London: Leonard Cheshire Disability and Inclusive Development Centre. Guzman, N., Huuhtanen, S., Katsui, H., Kilpelä, N., Koistinen, M., Pesola, K. and Tuure, T. (2016). Inclusive WASH Activities in the Global South. Helsinki: Disability Partnership Finland. Handicap International. (2008) How to Build an Accessible Environment in Developing Countries. Manual #2 – Access to Water and Sanitation Facilities. Retrieved from: http://www.asksource.info/resources/how-build-accessibleenvironment-develop ing-countries-manual-2-access-water-andsanitation Hickey, S. and Mohan, G. (2004). Participation, from Tyranny to Transformation? Exploring New Approaches to Participation in Development. London: ZED Books. IDDC. (2004). Inclusive Development and the UN Convention. Brussels: International Disability and Development Consortium. Retrieved from: http://www.un.org/esa/ socdev/enable/rights/ahc3iddc.htm Jones, H. and Reed, B. (2005). Water and Sanitation for Disabled People and Other Vulnerable Groups: Designing Services to Improve Accessibility. Loughborough: Water, Engineering and Development Centre, Loughborough University. Jones, H. and Wilbur, J. (2014) Compendium of Accessible WASH Technologies. WaterAid, UK. Retrieved from: http://www.wateraid.org/accessibleWASHtechnologies Katsui, H. (2009). Is the Participatory Research Approach a Burden for the Researched People?Finnish Society for Development Research. Knowledge, Development and Academic Partnership conference, 12 February 2009. Helsinki, Finland. Katsui, H. and Koistinen, M. (2008). The Participatory Research Approach in Non-Western Countries: Practical Experiences from Central Asia and Zambia. Disability and Society 23(7): 747–757. Retrieved from: http://dx.doi.org/10.1080/09687590802469248 Kynnys. (2014) Accessibility Guide. Helsinki. Retrieved from:http://kynnys.fi/kehity syhteistyo/yleista/ajankohtaista Lamichhane, K., Ballabha, D. and Kartika, D. (2014). Analysis of Poverty between People with and without Disabilities in Nepal: Evidence-based Analysis for Post-2015 Development Strategies. Japan International Cooperation Agency Research Institute Working Paper No.77. Retrieved from: http://jica-ri.jica.go.jp/publication/assets/ jica_ri_wp_no.77_2014_2.pdf Lehtomäki, E., Tuomi, M. and Matonya, M. (2014). Educational Research from Tanzania 1998–2008 Concerning Persons with Disabilities: What Can We Learn? International Journal of Educational Research 64: 32–39. Retrieved from: http://dx. doi.org/10.1016/j.ijer McNiff, J. (2013). Action Research, Principles and Practice. New York: Routledge. McTaggart, R. (1997). Participatory Action Research: International Contexts and Consequences. Albany: State University of New York Press. Meshack, M.V. (2004). Potential and Limitations of Stakeholders’ Participation in Community-Based Projects: The Case of Hanna Nassif Roads and Drains Construction and Maintenance in Dar es Salaam, Tanzania. International Development Planning Review 26(1): 61–82. doi:10.3828/idpr.26.1.4

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Ministry for Foreign Affairs of Finland. (2015). Human Rights Based Approach in Finland’s Development Cooperation. Guidance Note. Retrieved from: http://formin. finland.fi/doc/HRBA_guidancenote2015 NFDN. (2013). Holistic Report: Monitoring the Rights of Persons with Disabilities in Nepal. Kathmandu: National Federation of the Disabled-Nepal. Retrieved from: https://ia902600.us.archive.org/4/items/nfdnepal/Nepal-CMP-Disability-Right s-Holistic-Report-Final%28PrintingVersion%29.pdf Norman, W.R. (2010). Water, Sanitation and Disability in Rural West Africa – Enhancing Access and Use of WASH Facilities. Mechanicsburg, PA: Messiah College. OHCHR. (2006). Frequently Asked Questions on a Human Rights-Based Approach to Development Cooperation. Office of the High Commissioner on Human Rights. New York and Geneva: United Nations. Özerdem, A. and Bowd, R. (2009). Participatory Research Methodologies: Development and Post Disaster/Conflict Reconstruction. Farnham, UK and Burlington, VT: Ashgate. Rautanen, S. (2010). ‘Good Practices’ Related to Access to Safe Water and Sanitation. Geneva: Human Rights Council. Rich, M.J., Giles, M.W. and Stern, E. (2001). Collaborating to Reduce Poverty Views from City Halls and Community-Based Organizations. Urban Affairs Review 37(2): 184–204. doi:10.1177/107808740103700202 RVWRMP. (2009). Revised Project Document. Rural Village Water Resources Management Project. Retrieved from: http://www.rvwrmp.org.np/wp-content/uploads/ 2012/05/RWSSP_WN-Project-revised-doc-from-MFA-March-2011.pdf Secretary General of the United Nations. (2014). Realization of the Millennium Development Goals and Other Internationally Agreed Development Goals for Persons with Disabilities: A Disability-Inclusive Development Agenda Towards 2015 and Beyond. Document number A/69/187. New York: United Nations. Shakespeare, T. (2006). Disability Rights and Wrongs. London: Routledge. Taylor, B. (2009). Situation Analysis of Women, Children and the Water, Sanitation and Hygiene Sector in Tanzania. Dar es Salaam, Tanzania. Retrieved from: http://www. tzdpg.or.tz/fileadmin/documents/dpg_internal/dpg_working_groups_clusters/cluster_2/ education/3-Core_Documents/JESR09_MKUKUTA_SITAN09_WASH.pdf Tesfu, M. and Magrath, P. (2006). WaterAid Ethiopia Briefing. Note 9: Equal Access for All. Retrieved from: http://www.wateraid.org/documents/plugin_documents/ briefing_note_disability.pdf Traustadóttir, R. (2009). Disability Studies, the Social Model and Legal Development. In Oddny Mjöll Arnardóttir and Gerard Quinn (eds) The UN Convention of the Rights of Persons with Disabilities: European and Scandinavian Perspectives. Leiden: Martinus Nijhoff Publishers, 3–16. UNESCO. (2003). The Human Rights Based Approach to Development Cooperation: Towards a Common Understanding Among UN Agencies. New York: United Nations Educational, Scientific and Cultural Organization. Retrieved from: http:// www.unescobkk.org/fileadmin/user_upload/appeal/human_rights/UN_Common_ understanding_RBA.pdf UNICEF. (2016). UNICEF’s Strategy for Water, Sanitation and Hygiene 2016–2030. New York. Retrieved from: https://www.unicef.org/wash/files/UNICEF_WASH_Stra tegy_2016-2030__At_A_Glance.pdf UNICEF/WHO JMP. (2015). 25 Years Progress on Sanitation and Drinking Water: 2015 Update and MDG Assessment. Geneva: WHO.

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United Nations. (2006). Some Facts about Persons with Disabilities. New York: United Nations. Retrieved from: www.un.org/disabilities/convention/facts.shtml. United Nations. (2013). The Millennium Development Goals Report. New York: United Nations. UN News Center. (2010). General Assembly Declares Access to Clean Water and Sanitation is a Human Right. New York: United Nations. Retrieved from: https:// news.un.org/en/story/2010/07/346122-general-assembly-declares-access-clean-water-a nd-sanitation-human-rightWaterAid (2012) Inclusive WASH: Building skills towa rds inclusive water, sanitation and hygiene http://inclusivewash.org.auUN News Center. (2014). UN Rights Office Hails Ratification of Disability Convention by 150 States as ‘Major Milestone’. New York: United Nations. Retrieved from: http:// www.un.org/apps/news/story.asp?NewsID=48708#.VB_aAFYxHlJ Walmsley, J. (2001). Normalisation, Emancipatory Research and Inclusive Research in Learning Disability. Disability and Society 16(2): 187–205. Retrieved from: http:// dx.doi.org/10.1080/09687590120035807 Walmsley, J., and Johnson. K. (2003). Inclusive Research with People with Learning Difficulties: Past, Present and Futures. London: Jessica Kingsley. WEDC. (2015) Equity and Inclusion in Water, Sanitation and Hygiene Resources. Retrieved from: https://wedc-knowledge.lboro.ac.uk/collections/ equity-inclusion WEDC and Water Aid. (2012) Facilitator Notes: Accessibility Audit of Water and Sanitation Facilities. Retrieved from: http://wedc.lboro.ac.uk/resources/learning/ EI_ FN2_Accessibiity_Audit_final.pdf White, S., Kuper, H., Itimu-Phiri, A., Holm, R. and Biran, A. (2016). A Qualitative Study of Barriers to Accessing Water, Sanitation and Hygiene for Disabled People in Malawi. PLoS ONE 11(5): e0155043. doi:10.1371/journal.pone.0155043 WHO. (2015). Water, Sanitation, and Hygiene. Key Facts from JMP 2015 Report. Geneva. Retrieved from: https://www.who.int/water_sanitation_health/monitoring/ jmp-2015-key-facts/en WHO and World Bank. (2011). World Report on Disability. New York: World Health Organization and World Bank. Retrieved from: http://www.who.int/disabilities/ world_report Wilbur, J. and Jones, H. (2014). Disability: Making CLTS (Community-Led Total Sanitation) Fully Inclusive. Brighton: Institute of Development Studies. Retrieved from: http://www.shareresearch.org/LocalResources/Frontiers__making_CLTS_fully_ inclusive.pdf

10 Global disability rights instruments and the challenges of implementation Observations of the former UN Special Rapporteur on Disability Shuaib Chalklen Introduction This chapter is based on my personal experiences as the former United Nations (UN) Special Rapporteur on Disability for the Commission on Social Development between 2009 and 2014. The foundation for disability rights and development was laid out in the World Programme of Action concerning Disabled Persons (1982). Since then, the development of a number of important instruments has shaped the international policy discourse on disability, including most notably, the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993) and the Convention on the Rights of Persons with Disabilities (2006). Together, these three instruments constitute the core international normative framework for action to promote the advancement of the rights of persons with disabilities in the world. In this chapter, I will first outline the historical origins of the mandate of the Special Rapporteur on Disability of the Commission for Social Development, and the current mandate of the Special Rapporteur on the Rights of Persons with Disabilities and thereby clarify some of the differences between the two mandates. Second, I will elaborate on the stakeholders at global and regional levels especially civil society, and the impact they have on the implementation of the UN Convention on the Rights of Persons with Disabilities (CRPD). Third, I will contrast these roles with my observations and the challenges with implementation of the CRPD that I observed. I will particularly refer to the gaps between policy and practice and the role of civil society by using South Africa as an example and how the impact of global instruments and organizations have negatively impacted on the implementation of the CRPD. Subsequently, I will conclude this chapter by arguing that the participation of people with disabilities in the policy formulation, implementation and monitoring is integral to the success of the CRPD.

The role of special rapporteurs In March 1994, the Secretary General appointed the first Special Rapporteur on Disability. He held this position until 2002. The second Special

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Rapporteur was appointed in June 2003 until December 2009. I was appointed Special Rapporteur in December 2009 and assumed duties in January 2010. The normative framework informed the mandate of the Special Rapporteur included the following: monitoring of the UN Standard Rules, mainstreaming disability in development, fostering international cooperation, promoting the implementation of the Standard Rules, the UN Convention on the Rights of People with Disabilities (CRPD) and other international development instruments, including the Millennium Development Goals (MDGs), and focusing on the inclusion of vulnerable groups within the disability community. In my first meeting with the Under Secretary General and Head of the UN Department for Economic and Social Development (UNDESA), he emphasized the need to increase the number of ratifications of the CRPD. It should be noted that the Special Rapporteur was based at UNDESA in New York and not at the Office of the High Commission for Human Rights in Geneva. The UN Voluntary Fund on Disability, or funds that were granted by friendly government specifically for the activities of the Special Rapporteur funded the activity of the Special Rapporteur on Disability. This is an important distinction as it impacts on the efficacy of the Special Rapporteur and on his ability to carry out the mandate and priorities. During this period of my mandate as the Special Rapporteur, the pace of ratifications was phenomenal and the groundswell of support for the CRPD created a different emphasis on the work of the Special Rapporteur on Disability. According to the United Nations Handbook (UN, 2009), the mandate holders are known as Special Rapporteurs, Representatives of the Secretary General, Independent experts, or members of Working Groups serve in their personal capacities. Their mandates come from the Human Rights Council, they are not UN staff members and do not receive salaries or any other financial remuneration for their work. They uphold their mandate through independence, impartiality, equity, honesty and good faith. Special Rapporteurs and other mandate holders respond to individual complaints, conduct studies, visit countries, provide advice, engage in advocacy, raise public awareness, and work in partnership with non-governmental organizations (NGOs). They interact with actual and potential victims of human rights violations and provide a link between governments, national institutions and civil society. The Office of the High Commissioner for Human Rights’ (OHCHR) Special Procedure Division provides direct support for the thematic mandates and works closely with other parts of the OHCHR that service the country mandates. The division provides thematic, fact-finding, policy and legal expertise, conduct research and analysis and provides logistical and administrative support to mandate holders. As can be noted above the level of support that a Special Rapporteur receives from the OHCHR is not comparable with the support that I got from UNDESA. This level of support was not available in New York and there was a shortage of funds to the extent that I had to raise funding to support my

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work, which was generally supplied by the governments of Sweden and Finland. Small contributions were received from some governments that went to the UN Voluntary Fund on Disability. This was not an ideal scenario in which to carry out the mandate of the Special Rapporteur. My mandate was based at UNDESA and reported annually to the Commission for Social Development (CSocD). The mandate of the Special Rapporteur during my tenure did not include a complaint mechanism or investigative powers but was rather a benign approach to working with governments and civil society. As Special Rapporteur, for example, I received an invitation from civil society organizations in the United Kingdom who were having a meeting to discuss the effects of budget cuts on disability programs in the UK Parliament. I was invited to speak at the event but had to withdraw when the UK Mission to the UN raised objections to my presence, as the UK Government did not invite me. I had to withdraw from the meeting. Due to a number of difficulties I encountered and the different approaches between UNDESA and OHCHR, I expressed concerns raised by many stakeholders and suggested the shift of the mandate to OHCHR in my last annual oral presentation for the Commission at the end of my mandate as Special Rapporteur. This idea was widely supported, which consequently shifted the location of the Special Rapporteur on Disability to OHCHR. The current Special Rapporteur is, therefore, based in Geneva. The mandate of the Special Rapporteur was shifted to Geneva following Human Rights Council resolution 35/6. The current Special Rapporteur is therefore the first Special Rapporteur on the Rights of Persons with Disabilities. The Special Rapporteur attached to the OHCHR is mandated to:         

Develop a regular dialogue with States and other stakeholders for the identification, exchange and promotion of good practices related to the realization of the rights of persons with disabilities; Receive and exchange information and communications on violations of the rights of persons with disabilities; Consult with and involve persons with disabilities and their representative organizations in a participatory manner in the conduct of her work; Make concrete recommendations on how to better promote and protect the rights of persons with disabilities, including on how to promote development that is inclusive of and accessible to persons with disabilities; Provide technical assistance in support of national efforts for the effective realization of the rights of persons with disabilities; Raise awareness of the rights of persons with disabilities; Closely cooperate with other UN human rights mechanisms and UN entities to advance the rights of persons with disabilities in a coherent manner; Integrate a gender perspective throughout the work of the mandate; Report annually to the Human Rights Council and the General Assembly.

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There are fundamental differences between the old mandate at the Commission for Social Development and the Human Rights Council. Most importantly the mandate of the current Special Rapporteur focuses on the rights of persons with disabilities and is in line with the UNCRPD and the broader human rights framework. The impact of this difference was stark during many country visits. During the course of 2011, I visited Finland at the invitation of the organizations of persons with disabilities and had an opportunity to meet with officials of the Finnish government. During this meeting, the officials asked me to advise them on some of the articles of the CRPD, Article 12 in particular. Article 12 deals with legal capacity and the government at this stage had not ratified the CRPD. They still needed more time to examine the impact on the Finnish legal system and its impact. I referred to the work of the World Network of Users and Survivors of Psychiatry and their position. What I could not do is to refer to my own position based on the research of the Special Rapporteur and his support mechanisms in the UN system. I had no such support, so I had to refer them to the position of the global NGO. During my tenure, I also received several complaints from individuals and organizations from all over the world. I had no mandate to investigate these allegations or to refer to the governments for further investigation or information. Persons with disabilities and their organizations assumed that I was the Special Rapporteur for the CRPD, since the entry into force was a year prior to my appointment in 2009. For people with disabilities the CRPD is the only document that contains their aspirations. With my mandate, I walked a difficult and contradictory line between my attempts to focus and report on rights while my reports were edited to reflect a more (social) developmental focus. Another example was the inclusion of the MDGs in my mandate. The MDGs did not include persons with disabilities, as it made no specific reference to disability in any of its goals. I pointed out this discrepancy and the need for data in my 2010 report to the Commission. This discrepancy was also pointed out by the international organizations of persons with disabilities, especially the International Disability Alliance and its members. The global disability movement strongly advocated for disability inclusion, which contributed to the UN High-level Meeting on Disability and Development in 2013. For the first time in the UN history, the general assembly specifically dealt with disability as the central theme of discussion. Its outcome document, I believe, had a great impact on disability inclusion in the following Sustainable Development Goals that refer clearly to persons with disabilities in many targets. The new Special Rapporteur, therefore, stands with much stronger political foundations of disability rights and inclusion than ever before.

Global stakeholders Unlike thematic agencies such as UNWomen or UNICEF there is no disability-specific agency in the UN. The UNCRPD is monitored by the

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UNCRPD Committee in the Special Procedures Division of the OHCHR. There is also an annual Conference of States Parties to the Convention where thematic areas are explored in greater depth and the policy and legal implications are examined. This provides an opportunity for government and civil society to display some of their own UNCRPD compliant policy implementation and for others to learn from the challenges and opportunities presented. The United Nations Development Program (UNDP) plays a leading role regionally and nationally in providing guidance and support to states parties and to organizations of persons with disabilities. However many organizations testify that UNDP is not always supportive and do not prioritize disability. In fact, there are many UNDP and other UN agencies whose premises are not accessible to persons with disabilities. However, in Africa the regional office of the UNDP in Addis Ababa played a key role in the formation of the African Disability Forum, a structure established with my great enthusiasm by civil society organizations and with the support of many stakeholders, including international NGOs and UN agencies. The UNDP headquarters in New York also host the United Nations Partnership on the Rights of Persons with Disabilities (UNPRPD). This is a trust fund established to support the promotion of the UNCRPD. The UNPRPD provided financial support for the establishment of the African Disability Forum. One of the supportive UN agencies is UNICEF, which, at its headquarters in New York, has a dedicated disability unit that ensures that disability is mainstreamed throughout the programs and activities of UNICEF. In the field of inclusive education, UNESCO has played an important role and continues to support governments in the implementation of inclusive education efforts. The World Health Organization is a critical agency in terms of health and rehabilitation related efforts and contributed significantly to community-based rehabilitation services globally. The International Labour Organization contributes to the ongoing struggle of people with disabilities to be formally employed. They have raised the awareness of the global business community and continue to provide support to both international and local organizations of persons with disabilities and to state parties to the CRPD. In 2013, when the mandate of the Special Rapporteur was moving from UNDESA to OHCHR, then UN Secretary General created a new disability position and appointed Lenin Voltaire Moreno Garces of Ecuador as the Special Envoy on Disability and Accessibility. In 2017, the current UN Secretary General appointed Maria Soledad Cisterna Reyes from Chile as the new Special Envoy. Following the extensive institutional review led by the current Special Rapporteur, in 2019 the Secretary General launched the UN Disability Inclusion Strategy stating that he wants to see the UN fully accessible for all and for the UN to be an employer of choice for persons with disabilities. This is an important initiative because I can attest to the many UN buildings that are not accessible, especially the offices of UN Agencies. In Moldova, for example, as a wheelchair user I had to leave the UN Office in Chisinau for my hotel every

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time I needed to use a bathroom. As Special Rapporteur, I visited Vietnam at the invitation of UNICEF to assist with the lobbying of the government to ratify the CRPD. The UNICEF office was also not accessible and most meetings occurred in hotel lobbies. It is also encouraging to many people with disabilities that the UN wishes to be an employer of choice. Although the work done by the UN agencies mentioned above is important and their contribution to the realization of disability rights is critical, there are shortcomings and challenges. Many of the dedicated staff working at the agencies would be the first to admit that they face tremendous challenges. One of the main challenges is the availability of budgetary support for disability rights issues. Disability is often seen as the stepchild of the main function of an agency, confined to a small space with accessibility challenges and very often staffed by a single individual. This practice is prevalent in many of the agencies mentioned above; leaving staff isolated from the very mainstream programs, they are supposed to influence.

African regional stakeholders The scope of this article does not allow me to focus on all regional organizations and their roles in the implementation of the CRPD. For the sake of brevity, I will focus on Africa, the regional role players, and the involvement in implementing the CRPD. The UN Economic Commission for Africa (ECA) was established in 1958 and is one of five regional commissions under the administration of the UN headquarters. It is the regional arm of the UN in Africa that is mandated to support the economic and social development of its 54 member states, foster regional integration and promote international cooperation for Africa’s development. The work program of ECA focuses on two areas: promoting regional integration in support of the African Union vision and priorities and meeting Africa’s special needs and emerging global challenges (UN, 2009). It is based in Addis Ababa, Ethiopia. The ECA plays a limited role in the implementation of the CRPD. It hosted meetings on disability with the focus on disability data, and is used as a venue for other disability related organizations in Africa. I made several attempts to discuss the mainstreaming of disability into the programs of the ECA. I met with the Under Secretary on one occasion and discussed the overwhelming needs of people with disabilities in Africa. He of course mentioned the resource constraints of the ECA and tasked one official who was involved in the population and statistics division to look into my request. After that, I met with one of the officials in the gender and development division and again tried to discuss mainstreaming of disability and it hardly registered any interest. Recently the ECA appointed a single individual as a disability officer. This can be seen as progress and hopefully additional resources will be employed.

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The African Union recently established the African Union Disability Architecture (AUDA) which consist of the Continental Plan of Action on the African Decade of Persons with Disabilities, the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities in Africa and the replacement structure for the Rehabilitation Institute. The Protocol is similar in substance to the CRPD and given that 50 African countries have ratified the CRPD out of 54 AU member states, it seems more logical that the AU should ratify the CRPD. The EU as a regional structure ratified the CRPD so there is precedent for ratification.

International Disability Alliance There are a number of organizations of persons with disabilities and international organizations that work in the area of disability primarily as service providers. The most prominent global organization of persons with disabilities is the International Disability Alliance (IDA). The IDA is made up of global organizations of people with disabilities and the following organizations are members.              

African Disability Forum, Arab Organization of Persons with Disabilities, ASEAN Disability Forum, Down Syndrome International, European Disability Forum, Inclusion International, International Federation of Hard of Hearing People, International Federation for Spina Bifida and Hydrocephalus, Latin American Network of Non-Governmental Organizations of Persons with Disabilities and their Families, Pacific Disability Forum, World Blind Union, World Federation of the Deaf, World Federation of the DeafBlind, World Network of Users and Survivors of Psychiatry

My mandate as Special Rapporteur required me to work with civil society and I worked with IDA extensively. This did not preclude me from working with other international organizations such as Humanity and Inclusion, Christian Blind Mission, Leonard Cheshire Disability and Sight Savers International. My work with the International Disability Alliance provided a global network of organizations that led to many invitations to visit countries to support civil society and advise them on the implementation of the CRPD. The majority of country visits that I refer to in my reports came about at the invitation of organizations of people with disabilities.

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When I met with government during these visits, it was unofficial and brief. Some meetings could not take place such as my visit to the Minister for Public Works to in Kyrgyzstan. A meeting with the Minister was arranged by the umbrella organization of disabled people in Kyrgyzstan. When we arrived at the office of the Minister, the building was completely inaccessible and ironically, this meeting was supposed to discuss universal design and environmental accessibility in Kyrgyzstan. At a national level the main player is government. Any other institution cannot replace the role of the state and they are the primary duty bearers insofar as the implementation of the UNCRPD is concerned. In the Global South and especially in Africa this provides a huge challenge to people with disabilities because the response of the state is contingent upon numerous factors such as financial and human resources, capacity to deliver services and other governance challenges such as the access to justice and respect for the rule of law. The role of civil society actors such as OPDs is also challenged because in many countries, such as Tanzania and Ethiopia, OPDs cannot openly proclaim that they are human rights-based organizations and have to state that they are developmentfocused before they can legally register to operate in that country. In these countries, organizations also have to declare where they source their funding from and any association with international human rights organizations are not allowed. These restrictions on OPDs as civil society curtails their role as advocates for the rights of people with disabilities and therefore the implementation of the CRPD, which these governments ratified.

The role of state parties to the CRPD In Africa, it is very hard to find a country that does not have an excellent policy on disability or who have not ratified the CRPD. At this stage, 49 African countries have signed or ratified the CRPD, some have reported to the CRPD monitoring committee in Geneva or have implementation plans for the CRPD. Yet any casual observer will be amazed at the report that national governments present at the annual Conference of State Parties to the CRPD. It will invariably consist of a glowing account of the charitable approach to disability with scant regard for the human rights treaty they are supposed to report on. This leaves a burden on people with disabilities, a more complex and difficult burden for people with disabilities in the least developed countries that are supposed to be the rights holders. The complexity centers on the capacity of the state. In sub-Saharan Africa the greatest challenge is good governance and accountability. This is arguably the most important single factor working against human rights-based disability policy being effectively implemented (Lang and Murangira, 2009). With good disability policy on paper, and the ratification of the CRPD most governments in sub-Saharan Africa fail to implement the articles of the CRPD. Also, effective incorporating human rights into national legislation require a well-functioning state based in the rule of law (de Gaay Fortman, 2012).

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There are, of course, other factors that contribute to the low level of implementation, such as weak economic growth, small manufacturing sector and a low tax base, competing demands on a small fiscus and so on. However, what cannot be disputed is that little effort is made even at an incremental level to demonstrate some commitment to the needs of disabled people. Small commitments such as the renovation of a single school to develop it into an accessible school to provide inclusive education can show commitment and can be developed into a longer-term vision for inclusive education. No country can claim to have implemented all of the articles of the CRPD. In developed countries disabled people are too often at the bottom of the pile, struggling with limited resources and opportunities for self-development. In the Global South as stated earlier, there are challenges with governance and transparency and financial constraints. However, nothing stops any government from consulting the OPDs and developing a set of priorities with an agreement for the incremental implementation of the development plan. Most countries have OPDs of varying capacity and in the Global South, they are seldom consulted on any issue concerning disability. The voice of civil society is hardly heard although the CRPD in Article 33 calls for the establishment of focal points in government and for monitoring mechanisms to be established that include OPDs. This dynamic plays itself out at a global level. At the UN headquarters in New York, some diplomats refer to the African Caucus as the “silent majority”, as they seldom speak out on issues of human rights or matters affecting the African continent, with rare exceptions coming from a handful of countries. The African Caucus represents 54 countries, a sizeable number of votes, easily courted by developed country interest. I had an opportunity to meet with the African Caucus in New York on one occasion. The meeting was a distinct disappointment as member of the caucus displayed a profound lack of knowledge of the CRPD and linked disability to rehabilitation. Not a single member of the caucus mentioned rights. Given the number of UN agencies playing an active support role in the implementation of the CRPD and who are active in the Global South one can easily see how this one-sided medical approach to the CRPD plays itself out at a national level. The UN and its agencies can only provide advice and technical support, such as research capacity, data gathering, capacity building and so on, it cannot decide for any government what their priorities must be. To move the issues forward requires exceptional advocacy skills on the part of OPDs who often do not have the necessary skills to fight an intransigent government or are silenced by miniscule forms of patronage from the government. Given this scenario, I as the former Special Rapporteur on Disability (2009–2014), called for the establishment of the African Disability Forum (ADF) with one of the main aims being the strengthening of the collective voice of Africans with disabilities.

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The development of the African Disability Forum In 2011 I called for the establishment of the ADF to build the capacity of African OPDs and to strengthen their collective voice (see UN Special Rapporteur, 2011). At the time of writing this chapter, more than 40 national federations of disabled people are members of the ADF. Full membership is only open to bona fide organizations of people with disabilities. Professional organizations or those of a charitable and welfare type persuasion can be associate members with no voting rights. The ADF is a democratic organization whose leadership is democratically elected every four years. At its recent general assembly, new leadership was chosen and accepted by all delegates present. The focus of the ADF is on both human rights and development. The CRPD is its guiding document and it promotes the AU Protocol. The ADF is also a full member of the International Disability Alliance. The ADF membership of the IDA allows ADF to play a role globally, regionally in Africa and nationally. Some of its current programs include the promotion of gender equality and the inclusion of women with disabilities in all its structures, member organizations and programmatic activities. The ADF is also collaborating with IDA on various capacity building programs in member countries. These programs are specifically targeted at building the capacity of OPDs to strengthen their understanding of the CRPD, to better advocate for their needs and to build a cadre of skilled and knowledgeable advocates in Africa. Other program activities include employment for disabled people and inclusive education. Its future programs will involve more aggressive lobbying tactics, working with African research agencies on data gathering methods and collaborating with national human rights institutes in Africa. The regional office of UNDP Africa is a major partner of the ADF and supported its development from the early days of its establishment through to its current programs. The ADF as mentioned previously is both a human rights and development-based organization. Its priorities must be both given that it operates in Africa and among some of the least developed countries in the world. Because of its human rights focus, institutions working for the protection and promotion of human rights are by their nature critical of government. Governments have a duty to provide the legal framework and institutional capacity to realize human rights. Its failure to do so leads to criticism that thin-skinned leaders find hard to accept. This dynamic runs throughout the apex of human rights at the UN and permeates through to the national context. International human rights treaties therefore become challenging to implement. In the African context, countries that ratified the CRPD would still provide some services but their emphasis would be on welfare and charity, rather than the fundamental dignity and rights of the rights holder. This unfortunate state of affairs is common in the Global South and more pronounced in the least developed countries. Cultural and historical factors play

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a role, as pointed out in Chapter 8 of this book, but it cannot alone account for this state of affairs. Some progress has been made, in Zambia, for example, the Federation of Disabled People went to the Zambian high court in 2010 to challenge the inaccessibility of government buildings and the court ruled in their favour. In South Africa there are a few similar cases where inaccessibility and discrimination was challenged in court by OPDs, resulting in victories for disabled people. However, these examples are rare. The overwhelming picture still shows little progress. The lack of support and acceptance of the human rights of every individual is still prevalent in most countries in the Global South. In many instances human rights is seen as a Western invention to undermine the authority of the state. This anti-democratic approach to governance that curbs civil society organizations from promoting human rights and prevent them from receiving foreign funding for human rights work blocks the implementation of the CRPD.

The South African case In the euphoria following the first democratic elections and the appointment of Nelson Mandela as president, the South African government in 1994 established the Ministry for Reconstruction and Development that was responsible for the governing party’s Reconstruction and Development Program. Nothing was mentioned on disability and the federation of disabled people, Disabled People South Africa (DPSA), lobbied the government to include disability and to establish an office to oversee the mainstreaming of disability in its development programs. This also resulted in the South Africa developing its first policy on disability, which was based then on the UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities. This was a victory for disabled people in South Africa because not only did it result in the subsequent inclusion of disability in the Bill of Rights of the South African Constitution but also it created massive awareness within government and society. Many advances were made in a short period and this being the honeymoon period of a short-lived revolution DPSA were swept away and became close to the governing party. It became so close that soon DPSA members were also members of parliament for the governing party. Senior members of its organization joined the administration and DPSA lost many of its most seasoned activists, resulting in a hollowing-out of the organization. It soon forgot its role as a social movement fighting for the rights and dignity or South Africans with disabilities. It now toed the party line. This dynamic did not happen overnight. It started with the shift of the most skilled staff of DPSA moving into the civil service. Since DPSA aligned itself with the greater mass democratic movement against apartheid, it seemed natural for this close relationship to blossom during the euphoria of the first five years of freedom and the presidency of Nelson Mandela. However, the effects of this close relationship were devastating for DPSA as a social

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movement. It began to mimic the structure and behavior of the ruling party not only in its own organizational structure but its top leadership became members of parliament for the ruling party, while still holding positions of influence in DPSA. As time issues arose that the required lobbying by DPSA it began to resolve these within the ruling party through their close relationship with cabinet ministers. Later issues were no longer resolved because of a perception among the DPSA leadership that they did not want to embarrass the ruling party. They were silenced by a system of patronage that ensured that they received preferential treatment from semi government funding sources and a few seats in parliament. The South African government was one of the first governments to sign and ratify the UNCRPD. It did so without hesitation knowing that it had its own organization that would take care of the CRPD. This state of affairs continues today, where once active and strong social movement challenged government neglect, can hardly muster a whimper to object to the violations of human rights before their eyes. Some of the most serious human rights violations occurred two years ago, where the provincial government in the richest province, Gauteng, outsourced the care of severely disabled individuals to hastily established NGOs, without oversight resulting in the deaths of 144 severely disabled people. This tragedy is rightly called the greatest human rights tragedy to occur in post-apartheid South Africa. The resulting outcry from the whole population hardly included DPSA. The once proud social movement lost its voice and political opposition parties spearheaded the narrative and demanded that reparations be paid to the families of the victims and the perpetrators of this crime be held accountable. South Africa made some progress but it is an example of what can occur when civil society loses its voice and align itself with the very institutions it should be holding to account.

Can the global become local? The CRPD contains the aspirations of all people with disabilities and it remains the beacon of hope for the dignity and equality of all globally. Human rights are also indivisible, it cannot be divided nor can it be applied in only parts of the Global North. The CRPD also remains the first international treaty that was drafted with the participation of civil society by granting people with disabilities the opportunity to have their voices heard and incorporated into the text of the treaty. The participation of people with disabilities during the treaty-drafting process is reflected throughout the text, such as in the Preamble and the following articles of the CRPD: (m) Recognizing the valued existing and potential contributions made by persons with disabilities to the overall well-being and diversity of their communities, and that the promotion of the full enjoyment by persons with disabilities of their human rights and fundamental freedoms and of

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Shuaib Chalklen full participation by persons with disabilities will result in their enhanced sense of belonging and in significant advances in the human, social and economic development of society and the eradication of poverty (o) Considering that persons with disabilities should have the opportunity to be actively involved in decision-making processes about policies and programmes, including those directly concerning them, And in Article 4.3. In the development and implementation of legislation and policies to implement the present Convention, and in other decisionmaking processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations. Article 33. 3. Civil society, in particular persons with disabilities and their representative organizations, shall be involved and participate fully in the monitoring process.

No state party to the CRPD expressed any reservations to the participation of civil society stated in the above text. As mentioned previously during my term as Special Rapporteur I relied on OPDs to invite me to visit countries, to assist with raising the necessary funds to undertake these visits and to support my mandate by providing information that highlight the conditions of underrepresented groups of people with disabilities, such as people with psychosocial disabilities. In fact, it is the World Network of Users and Survivors of Psychiatry (WNUSP) that worked closely with me to raise awareness of the vulnerability of people with psycho-social disabilities and the conditions of torture in institutions for people with mental disabilities. One of the most profound experiences I had was when I visited an institution for people with mental disabilities in Indonesia, where I encountered the most horrific conditions. The local chapter of WNUSP arranged my visit and I confronted Indonesian government officials about the horrendous conditions. The result of my encounter with the officials was an apology. Nothing else. But it highlights the role of civil society and of small group of committed activist with disabilities in the Global South and the fundamental role they play in protecting human rights. The global can therefore become local as the example of Indonesia, Zambia and the challenges in South Africa show. Of course, other factors play a role such as economic status, as Sen argued in Development as Freedom (Sen, 2009), where he states that development can be seen as a process of expanding real freedoms that people enjoy. He further states that growth of the Gross National Product (GNP) or of individual incomes can be means to expanding the freedoms enjoyed by members of the society. But freedoms depend also on other determinants, such as social and economic arrangements (e.g. education and health care) as well as civil and political rights (e.g. the liberty to participate in public discussion and scrutiny). The realization of disability rights is therefore also dependent on better

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governance, improved service provision, greater transparency and accountability on the part of governments. But even with these attributes matters can still go awry as the South African example shows. Vigilance within civil society is a contact requirement because when no one is watching things can and will go wrong.

Concluding remarks This chapter tried to examine the nature of global human rights and development treaties and institutions and the challenges they face when trying to implement their mandate. The UN, despite its many shortcomings, is not the primary duty bearers and their agencies are limited to their supportive role. They have their challenges within and among themselves but the final authority rest with governments. In developing countries there are governance challenges, a lack of consultation with civil society organizations that results in little or no planning or implementation. The UN is also a structure of member states. Governments are members of and therefore the relationship of the UN agencies is with its members. This meant that other role players such as International NGOs had to fight for space to have their voice heard. However, this is also changing as organizations such as IDA as a global alliance of OPDs are now occasionally consulted at the UN level and participate in some decision-making. The membership of a global organization such as IDA also shows how they impact regionally such as through the African Disability Forum, the ASEAN Disability Forum and all its other members that are active in the Global South. The CRPD provides that compass that keeps the focus on the fundamental human rights of all people with disabilities. There is no alternative but to keep on advocating for the progressive realization of the rights contained in the CRPD.

References de Gaay Fortman, Bas. (2011) Political Economy of Human Rights. London: Routledge. Lang, R. and Murangira, Ambrose. (2009) United Nations Convention on the Rights of Persons with Disabilities, ed. Jukka Kumpuvuori and Martin Scheinen. Multidisciplinary Perspectives: VIKE publication Series No.5. Sen, Amartya. (1999) Development as Freedom. Oxford: Oxford University Press. UN. (2009) United Nations Handbook. Wellington, NZ: Ministry of Foreign Affairs and Trade. UN Special Rapporteur. (2011) Report of the Special Rapporteur to the 49th Session of the Commission for Social Development. (E/CN.5/2011/9). Presentation at the Commission for Social Development. Forty-ninth session. Available at Report of the Special Rapporteur to the 49th Session of the Commission for Social Development: Note by the Secretary-General on monitoring of the implementation of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities. WHO and World Bank (2011) World Report on Disability. Geneva: WHO.

11 Methodological discussion Participatory research approach in Disability Studies Hisayo Katsui

The third research question is: What are the challenges and opportunities of participatory research on disabilities in different contexts? This question sheds light on the methodological realm of the participatory research approach stemming from the global disability movement slogan of “Nothing about us without us”. The approach has been indispensable in the establishment and development of Disability Studies to go against hitherto predominant medical sciences through which medical professionals have had control of knowledge creation and have thereby had a profound impact on the decision making of persons with disabilities over their lives. As academia is part of society, research and teaching practices are not exempt from scrutiny for teasing out sophisticated and embedded power relationships. In this chapter, I have engaged lessons from the above case studies pertaining to their participatory research approaches and theorized power relationships within academia pertaining to disability studies today.

Participatory research approach in the case studies In the 1990s, academia was considered to be part of society and thus also part of the problem rather than part of the solution (Stone and Priestley, 1996: 701). About 30 years later, the methodology of disability studies is still contentious in taking the fine line between pursuing high rigor in academic impact and contributing to transformation of power imbalances in society. For instance, Shakespeare (2015: 1) ponders that disability studies is “not just about political expediency” but “trying to get as close to lived experience as possible” and to find out what we do not know and rethink taken-for-granted assumptions. As for the case studies included in this book, each case study benefited from the application of a participatory research approach in creating knowledge and disseminating it with local persons with disabilities. This part highlights some of the prominent efforts made at each stage of research work in the case studies and reflects on the application of participatory research approaches. The Ugandan case study was an extensive and robust one in terms of participatory research approach due to the length of the project between 2007 and 2012 and the resources mobilized for the project. Other case studies which took less time

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and money nevertheless also paid careful attention to the power relationships of researchers with different stakeholders throughout.

Planning and resource allocation In the Ugandan research, resources were carefully allocated to plan the research in a participatory manner and to employ co-researchers with disabilities and research assistants with disabilities. First, organizations of persons with disabilities (OPDs) in Uganda and the Nordic countries were consulted to ask for their insights and interests in disability research on their international cooperation activities. Many leaders of the disability movement are from privileged socio-economic contexts (Shakespeare, 2006: 75) and their capacity and competence to be part of a research process are high. Their interests were listened to and included in the plan. On the Finnish side, OPDs were invited to training on the theoretical understanding of a human rights-based approach to disability. Subsequently, the research framework was formulated. Two Ugandan researchers with disabilities were recruited to be part of the research project, while two Finland-based researchers were affiliated also, one of whom was a person with a disability. Three researchers with disabilities were recruited for this project from Uganda and Finland. In addition, three local research assistants were employed for my part of the research and they were all Ugandan women with different disabilities. The data collection was conducted with these assistants: I lived in the home of one of the women, conducted interviews and observations with another woman on weekdays, and did the same with the third woman on weekends. In this way, three Ugandan women with disabilities crosschecked and helped me in understanding and interpreting local social fabrics with their profound knowledge. Similar approaches were taken in Nepal with a research assistant who was a blind Nepalese woman, in Ethiopia with a research assistant who was an Ethiopian man with physical disabilities, and in Kyrgyzstan with a researcher who was a woman with physical disabilities. However, such deliberate allocation of shared power over resources and decision making especially on planning is sometimes not possible on an equal basis, when some research funders required the project team members to hold certain academic qualifications and many years of previous experience. When it comes to the leader and principle investigator, the required qualification is so high that makes involvement of local persons with disabilities in these positions extremely difficult. This simple example shows that the requirements of research funding sometimes encapsulate high efficiency and effectiveness stemming from principles embedded in neoliberalism, which entangles early career researchers with disabilities from different countries. When persons with disabilities have much lower socio-economic opportunities compared with peers without a disability in any context (WHO and World Bank, 2011; Tregaskis and Goodley, 2004; Shakespeare, 2018: 161), this is a significant barrier for researchers with disabilities. McRuer (2006: 159–170) poses a question to the academic world and claims that “our very bodies are caught up in, or even produced by” neoliberalism that demands “order and efficiency”. Tregaskis and Goodley (2004) call it research governance. The

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introduction of market forces into the university system has been an observed challenge since the 1980s and 1990s (Barnes, 1996: 108), which still is valid today or even more prominent than ever before. Goodley and Moore (2000) also refer to the current climate of research in which a trade-off is made between individual achievements of publications and promotion of inclusive research relationships. When “simply increasing levels of participation does not necessarily challenge or alter the power relations of research production” (Stone and Priestley, 1996: 713), these systemic barriers are a fundamental hindrance. Under the circumstance, Tregaskis and Goodley (2004) suggest feminist ethics of care that recognize fragility and interdependence of all human beings rather than problematizing the impairment-related needs of researchers with disabilities. Otherwise, even when employed in a research project, researchers with disabilities continue to reinforce internalized oppression (ibid.). Moreover, partnering with researchers with disabilities is not necessarily the solution of the asymmetrical power relationship. First, they cannot be representatives of the whole groups of persons with disabilities in different contexts due to the heterogeneity of these groups and their contexts (Stone and Priestley, 1996: 714–715; Shakespeare, 2006). Second, this “binary of disabled/non-disabled researchers” has also been criticized for not understanding the complexity of relationship (Tregaskis and Goodley, 2004). Tregaskis and Goodley (2004) suggest the importance of positionality and subjectivity in research, while Shakespeare (2018: 163) uses a metaphor and states that “letting a thousand flowers bloom” is the only way forward. Another challenge I faced at the beginning of the projects, but also throughout the project periods, were “constraints” (Stone and Priestley, 1996: 712) such as inaccessibility of university premises and grants. Tregaskis (2004) similarly claims that the mainstream research methodology literature does not explain how researchers with disabilities can conduct an ethnographic research with their personal assistants, for instance. I sometimes had to negotiate with funding authorities and universities and to establish new examples of reasonable accommodation for our research team members with disabilities. One source of funding did not have any previous experience of budget allocation for costs related to the personal assistant of a researcher with a disability. Our research project did not have the opportunity to use the grant to cover the costs of the personal assistant from this funding source, but we did manage to negotiate and change the funding criteria for its future research projects to be able to include costs incurred by having a personal assistant. As many funders do not have prior experience of having researchers with disabilities, let alone researchers with disabilities from the Global South, the planning stage involves heavy dialogue and negotiations to change the status quo when researchers with disabilities were largely not included. This was part of “political action” within the realm of research (Stone and Priestley, 1996: 705). Oliver (1992: 102) then pointed out that feminist and developing-world researchers had failed in social relations and further social

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change. He urged researchers to commit to social change, if research “is to become more useful and relevant”. Today more funders are aware of the importance of involving “users” in research and some even made it a requirement for funding; user involvement has been growing in number and influence (Shakespeare, 2018: 161). During the transition period as of now, disability scholars continue to encounter the academic system and structure that have embedded social power relations, and to accumulate experiences of establishing new research practices. Much evidence was in the case studies that verify that the academic world is part of society that can be questioned for the taken-for-granted status quo.

Co-production of knowledge After the planning stage, the researchers with and without disabilities in the case studies collected and analysed data, and co-produced both academic and popular publications collectively and individually. Particular attention was paid to avoid possible exploitation of people with personal experiential knowledges but to maximize benefits in this process for the stakeholders involved. In this part, I tried to learn lessons from the research phase of coproduction of knowledge (see Office for Disability Issues, 2010). In the Ugandan case study, the salaried Ugandan researcher visited Finland and participated in teaching at the University and engaged with other academic meetings and conferences, while Finnish researchers visited Uganda to conduct their research and teaching. We established a blog site for the research project and kept the research process open to a wider audience. All the affiliated researchers updated the blog with preliminary findings. Each researcher collected their own dataset with their own assistants, while the analysis phase involved more collaborative and collective works among the team including the research assistants. In the Kyrgyz case study (Chapter 8 of this book), disability activists from both Kyrgyzstan and Finland were my partners in conducting intensive a one-week training of trainers for Kyrgyz university lecturers in disability studies. With the disability activists and the university lecturers, we discussed the situation of Kyrgyz persons with disabilities during the training of trainers and produced teaching modules together as an outcome of the project. After the project, we reflected on the experiences with the disability activists, and drafted the Kyrgyz case study chapter of the book. In all the case studies, local researchers and research assistants with disabilities were crucial both in the data collection and analysis phases. The project members and key stakeholders were provided with draft versions of publications for their comments to increase the validity of knowledge before publications. In the process of knowledge creation, both partner researchers and research assistants with disabilities expressed the view that they had accumulated positive experiences and felt the sense of empowerment (e.g. in the Ugandan case, Katsui, 2012: 168–169). The Ugandan researcher with disability was promoted in his organization, while one of my research assistants with

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disabilities received another job offer after working as an assistant in our project for the first time. The Kyrgyz partner with a disability received an invitation to go to United Nations headquarters as an expert to make a presentation about Kyrgyz women with disabilities after the project engagement. These are a few examples of positive consequences. It should be noted, however, that the research experiences are definitely not the only reasons for those positive consequences. Such collective and collaborative experience is possible when research participants have certain capacities including basic skills such as literacy skills and access to a computer. Stone and Priestley point out the following: the collectivization of experience is still ordered within the researcher’s chosen frame of reference (albeit a framework is informed by the agenda of the disabled people’s movement). In addition, the collectivization of data occurs at the writing-up stage and thus remains remote from most of the research participants. Consequently, there is limited scope to alter the social relations of research production and the approach is open to criticisms of reinforcing isolation and individualism. (Stone and Priestley, 1996: 715) They subsequently summarise their point by stating, “It is relevant to note that all research is inherently theory driven, although this is rarely made overt” (Stone and Priestley, 1996: 716). In other words, academic framework has its own implications in addition to the system and structures. Many lessons are learnt in case studies in the effort to balance academic rigour and emancipation goals. The challenges of the research approach in case studies can be summarised as follows: 1) diversity of the research participants; 2) accessibility; and 3) self-determination. In all case studies, staff members of OPDs and local researchers and research assistants with disabilities were involved as key stakeholders throughout the projects. They were consulted for relevance and validity of the projects in general, and those of academic publications. They all had effective communication skills and were analytical, based on their vast experiences within their national disability movement as well as their personal account of disability. The participatory research approach was rather fruitful in validating the research results with their lived, local knowledge and insight. Nevertheless, it sometimes became difficult when I did not interpret the data in the same way. In the case of Uganda, for instance, I used the perspective of deaf women to understand the power relationships exercised in political participation practices. They were highly political and divisive exercises in which different parties had different opinions and experiences, and there were many “truths” from different perspectives. Based on the observations, field notes, personal and group interviews and literature reviews, the selected perspective of deaf women shed light on several layers of asymmetrical power relationships in the general assemblies observed. One OPD staff member opposed the

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interpretation in my draft manuscript, when shared, and asked me to change the texts in favour of deaf men. I exchanged several emails to figure out what the differences in our interpretations were and how I could reconcile the interpretation gap before publication. I learnt that his dissatisfaction was based mainly on my criticism of the undemocratic practices of the general assembly management of the very OPD that the staff member belonged to. I decided to solve this challenge by agreeing to insert a footnote openly informing readers about this disagreement between us. This is a challenge embedded in this participatory research approach. In many cases, the diversity of “persons with disabilities” means different viewpoints in practice (cf. Stone and Priestley, 1996: 714–715; Shakespeare, 2018: 163). Therefore, it is indispensable and even natural to undergo clashes with different participants when applying a participatory research approach. Researchers make the decision to choose legitimate viewpoints and opinions over others to base our arguments on, with good reasons, including selected theoretical frameworks and triangulation of data. I also choose arguments that support the primary cause of the research to create a social theory rather than the secondary cause of political intervention (Shakespeare, 2006: 33). That is, the final decision-making power continues to be held by the researchers, not the research participants, even though the power relationship between them is carefully planned and taken into account in the process of disability research. This is the dilemma of an approach that seeks proper and meaningful engagement of the research participants (Katsui, 2012: 169–170). In the case of Uganda, for instance, the researcher could have engaged with a development project first to train the three deaf women in sign language for an extended period before properly interviewing them. In the case of Finland, the researchers could have tried to train people with profound intellectual disabilities in communication skills and conceptualization of independent living ideologies. However, these are quite an unrealistic scenarios for a research project of this kind. Furthermore, even with long-term commitment of training with allocation of resources, they might encounter similar challenges at the end to participate in knowledge co-creation in reality, as long as academia pursues academic theories with rigor. After all, participation in research might be a burden for the research participants, which cannot be denied at all (Katsui, 2012: 168–170). Stone and Priestley (1996: 721) similarly argue that both academic and social impacts are important goals to achieve for researchers but “these twin goals have been held as inherently conflictual by many within both the research establishment and the disabled people’s movement is perhaps not surprising given the current political and research context.” Moreover, accessibility of research is another fundamental challenge. When it comes to persons with disabilities who were observed and interviewed, their conditions are totally different from those of the OPD staff members, and researchers and research assistants with disabilities. Ugandan deaf women at the grassroots, Ethiopian girls with visual disabilities, Nepalese mothers of

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children with disabilities, and Finnish persons with profound intellectual disabilities do not have IT skills and/or access to a computer. Some also do not have literacy skills or even a mother tongue. This means that visiting these people individually is the only way to communicate with them, even when the persons with disabilities are scattered throughout communities. This is not the biggest challenge, except in that meeting them is time-, energy- and moneyconsuming. The biggest challenge is that I could not communicate with many of them because we did not have a common language; for instance, with Ugandan deaf women at the grassroots or with Finnish persons with profound intellectual disabilities. When I visited three deaf women in their homes deep in the villages, these women used only home signs that are understandable only by their family members. I employed a sign-language interpreter to visit these women with me, but this was not very helpful, as they did not have any mother tongue at all. They were born in hearing families and had never been to school. Thus, they did not acquire any mother tongue. We also interviewed Finnish persons with profound intellectual disabilities in the presence of their instructors or personal assistants who understand their non-verbal communications to some extent. We visited them three times to understand them well, which, however, did not secure us dialogue as such. Under these circumstances, these research participants hardly had any access to information in general, much less the process of knowledge co-creation of respective case studies. The accessibility of the case studies, therefore, especially pertaining to their knowledge co-production process, which often involves email communications, I have to confess, is highly questionable, even though many efforts were deliberately made during the information and knowledge dissemination phase as will be discussed below. Third, self-determination is therefore a relevant issue to investigate. In all case studies, the decision not to participate in the research was also considered important because that is also the exercise of decision-making power (Katsui and Koistinen, 2008; Katsui, 2012: 172). Participation should not be imposed but voluntarily decided their participation in theory. Self-determination is badly jeopardized when trying to engage some research participants such as Ugandan deaf women at the grassroots and Finnish persons with profound intellectual disabilities. I failed to present information of the studies in detail and an informed consent form, even though they were prepared in simple language without jargon and an oral option was possible and tried. Many of the persons with disabilities in the case studies did not have the vocabulary of the key concepts such as “human rights” and “participation” to start with. I failed to explain the meanings to many without common communication means. Many of the concepts used in the study are not part of their daily vocabulary and thus most likely not considered as relevant either, even though they were the common interests of local OPD leaders. In those cases when they could not consent to be part of the case studies, I approached their proxies instead (e.g. Iacono, 2006; Ho et al., 2018: Mietola and Vehmas, 2019). Throughout the studies, I was alert and conscious about the well-being of our research participants (Mietola et al., 2017). However, I could not

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ensure the self-determination of one of the most vulnerable groups of people among persons with disabilities when substituted their consent with the consent of proxies only. The co-production of knowledge entails the dilemma between the academic goals to reach the most vulnerable and marginalized persons with disabilities to hear their experiences at the grassroots, and the empowerment of persons with disabilities through disability research with a participatory research approach. The evidence accumulated from the case studies has shown once again that the existing power relationships matter: those who are already powerful with better capacity benefit more in studies and their research processes, while a study of this kind cannot dramatically change the realities of the persons with disabilities (Stone and Priestley, 1996: 720) particularly when the discrimination against these persons has been as severe as it was in terms of their capacities and environments (Katsui, 2012: 172). Hence, setting a realistic goal is one way forwards (Katsui and Koistinen, 2008). A more difficult choice is around unethical alternatives: excluding difficult-to-reach people with their full consent from a study or including them without securing their full understanding and voluntary will. This ethical issue is difficult, as current ethical standards are so strict that it could become restrictive for persons with disabilities to be part of such research despite their major contribution (Iacono, 2006: 173; Ho et al., 2018). If the case studies included only those who could explicitly express their opinions and decisions, it would have excluded many others who are more marginalized and/or vulnerable in reality, such as women with disabilities in the Northern part of Uganda in internally displaced people’s camps (Katsui, 2012). Reaching those at the grassroots was essential for these studies, to be able to understand part of the complexity of realities and lived experiences of disabilities at different levels. Hence, between the two unethical choices, I chose the one in which I met grassroots persons with disabilities in different contexts even though I could not ensure their willingness to participate in the study to the full extent. In other words, co-production of knowledge was far from reality in many of the case studies.

Knowledge dissemination and social transformation efforts in the Global South Knowledge production is not the end of a research project. A participatory research approach is not complete when knowledge dissemination does not properly take place. When studies are ready, researchers are responsible for disseminating newly created knowledge to the research participants and beyond for contributing to social impact. Therefore, various targeted efforts have been made to disseminate knowledge and information when the case studies were completed on top of conventional academic ways of information dissemination such as academic and popular publications, conference paper presentations, and teaching university students in the affiliated universities.

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This part goes beyond such conventional ways of information dissemination and elaborates on further efforts by critically analysing their significance. The Ethiopian case study on inclusive education was policy-driven as it was a commissioned study by the Finnish Ministry for Foreign Affairs. Therefore, its focus was social impact based on the academic findings so that the findings would contribute to changes in the international cooperation practices of the Finnish government and beyond. The book launch was held at the Ministry for Foreign Affairs of Finland with the Foreign Minister and Development Minister. They were provided with “a policy brief” that summarized findings and recommendations in two pages so that they could quickly acquire the essence of the research. They listened to critical issues identified and were urged to respond to the list of recommendations in their speeches. They then admitted the importance of disability inclusion in development and international cooperation and showed their political will and support in transforming some of their practices including introduction of inequality analysis when initiating a new development cooperation project, for instance. I was invited to share the findings and recommendations with a wider audience such as a group of Members of Parliament, and representatives of Finnish Embassies around the globe. In addition, research assistants helped the researchers to disseminate the findings back to the research participants in Ethiopia. The Nepalese case study on the rights to water and sanitation was practiceoriented research based on profound needs of persons with disabilities to the particular human rights. As the topic is quite personal, it was important that some focus group discussion among OPD staff members took place to exchange experiences and to enhance the collective and participatory content of the research (Stone and Priestley, 1996: 715). Some preliminary findings of the research were thus already shared among the research participants when collecting the data. After the fieldwork in Nepal, key stakeholders of both the disability sector and the water and sanitation sector in international cooperation were invited to form a voluntary study group. This group of around ten people (both non-governmental and governmental actors and researchers) had regular meetings to discuss disability inclusion in water and sanitation sector practices in the Global South. In the process of data collection from Finnish water and sanitation sector, I learnt that both technical solutions and social solutions are what they want to learn when it comes to disability inclusion in this sector. With the group members, we drafted a handbook on disability inclusion in the water and sanitation sector based on their need for technical and social solutions (Guzman et al., 2016). Subsequently, a seminar was held to share the draft handbook with a wider audience for their comments, after which it was published online so that it could be widely accessed. Both Finnish and Global South OPDs were trained how to use the handbook and its findings and recommendations, so that they could become the trainers. As for the Ugandan case study, the information dissemination was held primarily in three ways on top of the conventional ways such as book

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publication (Katsui, 2012). One more trip to Uganda was conducted to bring the findings back to the research participants when the book was published. After the visit in 2012, I updated the blog1 as follows. This Ugandan disability research project was concluded in the end of September. For my part, it was concluded when findings were delivered to the Ugandan disability movement in October during my last visit to Uganda. I had three main activities to deliver the findings. Firstly, I visited the three deaf women in villages whom I interviewed during my visit in 2008. A popular version of the book was produced so that those who are illiterate also received findings and information in the colour-printed pictures. Obviously, pictures also have shortcomings and cannot reach, for instance, those with visual impairments. However, as I focused on deaf women in my research, I decided this way of delivering messages. I visited their homes one by one and gave both popular version and a copy of my book to these three deaf women. I was very happy to see them again, while they also welcomed me with big smile. One of their family members said, “I didn’t know that a mzungu (white) could love us so much.” I felt complicated by this statement, because of the perception generally attached to white people who only use them and leave them. This is something to think about for my future work, definitely. Secondly, I held a book launch at NUDIPU, the National Union of Disabled Persons of Uganda, the umbrella organization of persons with disabilities. I invited OPDs and informed them beforehand that I was not paying any sitting or transportation allowance as many development agencies do for holding a meeting. Nevertheless, some 25 people showed up to pick up copies of my book. This was encouraging under the circumstance where people are used to receiving money for any meeting. Thirdly, I also taught human rights Master students on disabilities and human rights at Makerere University for one whole week; 5–8 pm every day. Obviously, the teachings based much on the findings of my latest book. But I am particularly happy for the three guest lecturers who came to deliver their strong messages to the future leaders of the country: one woman with a physical disability who was one of my research assistants, one deaf woman who is the executive director of Deaf women’s organization, and one man with a physical disability who is the newly elected Committee member of the Convention. They were eloquent and powerful. I assume that the students would never forget these personal experiences of communicating with such powerful disability activists from their own country, even when they forget about my lectures! (Blog texts, posted 14 November 2012) A participatory research approach in a non-Western context is not simple (Katsui and Koistinen, 2008). As has been discussed in this chapter with examples from the case studies, it is well established that persons with

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disabilities globally are less likely than others to have access to education (Mizunoya et al., 2016; WHO and World Bank, 2011) and are often not considered to be equal thinkers and knowers in the research process (Brown and Leigh, 2018; Swartz, 2018). The inherent power relationship between the Global North and South is too often reflected on in disability studies in the Global South, as has become clear by now in the case studies. More precisely, Grech (2011: 87) argues that the disability in Global South has been largely excluded in the disability studies in the Global North. He questions the epistemological disengagement from “majority world disability” that bypasses a majority world view, culture, context, history among others. Epistemic justice is called for (see Watermeyer et al., 2019; Grech and Soldatic 2016; Meekosha 2008, 2011). The issue of coloniality further complicates the already multi-layered power relationships experienced by persons with disabilities in the Global South. The colonial nature of disability research is yet largely unaddressed (Hutcheon and Lashewics, 2019), especially in terms of research methodology, and thus it was important to unpack with tangible examples in this chapter. A proper decolonization research method is most likely not yet well established in global and critical disability studies as of today. Nevertheless, the embodied global and local inequalities including in disability research need to be acknowledged and further discussed, to strive for a decolonized methodology.

Note 1 http://disability-uganda.blogspot.com/2012/11/hisayo-delivered-findings-back-to.html

References Barnes, Colin. (1996) Disability and the Myth of the Independent Researcher. Disability and Society 11(1): 107–112. doi:10.1080/09687599650023362 Brown, N. and Leigh, J. (2018) Ableism in Academia: Where Are the Disabled and Ill Academics? Disability and Society 33(6): 985–989. Goodley, D. and Moore, M. (2000) Doing Disability Research: Activist Lives and the Academy. Disability and Society 15(6): 861–882. Grech, Shaun. (2011) Recolonising Debates or Perpetuated Coloniality? Decentring the Spaces of Disability, Development and Community in the Global South. International Journal of Inclusive Education 15(1): 87–100. Grech, Shaun and Soldatic, Karen. (2016) Disability in the Global South. Cham, Switzerland: Springer. Guzman, N., Huuhtanen, S., Katsui, H., Kilpelä, N., Koistinen, M., Pesola, K. and Tuure, T. (2016) Inclusive WASH Activities in the Global South. Helsinki: Disability Partnership Finland. Ho, Portia, Downs, Jenny, Bulsara, Caroline, Patman, Shane and Hill, Anne-Marie. (2018) Addressing Challenges in Gaining Informed Consent for a Research Study Investigating Falls in People with Intellectual Disability. British Journal of Learning Disabilities 46(2): 92–100.

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Hutcheon, E.J. and Lashewicz, B. (2019) Tracing and Troubling Continuities Between Ableism and Colonialism in Canada. Disability and Society. doi:10.1080/ 09687599.2019.1647145 Iacono, Teresa. (2006) Ethical Challenges and Complexities of Including People with Intellectual Disabilities as Participants in Research. Journal of Intellectual and Developmental Disability 31(3): 173–179. Katsui, H. (2012) Disabilities, Human Rights and International Cooperation: Human Rights-Based Approach and Lived Experiences of Uganda Women with Disabilities. Helsinki: The Center for Human Rights of Persons with Disabilities. Publication Series No. 8. Katsui, H. and Koistinen, M. (2008) Participatory Research Approach in Non-Western Countries: Practical Experiences from Central Asia and Zambia. Disability and Society 23(7): 747–757. McRuer, R. (2006) Crip Theory: Cultural Signs of Queerness and Disability. New York: New York University Press. Meekosha, H. (2008) Contextualizing Disability: Developing Southern/Global Theory. Keynote paper given to 4th Biennial Disability Studies Conference, Lancaster University. 2–4 September 2008. Meekosha, H. (2011). Decolonising Disability: Thinking and Acting Globally. Disability and Society 26(6): 667–682. doi:10.1080/09687599.2011.602860 Mietola, Reetta, Miettinen, Sonja and Vehmas, Simo. (2017). Voiceless Subjects: Research Ethics and Persons with Profound Intellectual and Multiple Disabilities. International Journal of Social Research Methodology 20(3): 263–274. doi:10.1080/ 13645579.2017.1287872 Mietola, Reetta and Vehmas, Simo (2019) ‘He is, after all, a young man’: Claiming Ordinary Lives for Young Adults with Profound Intellectual Disabilities. Scandinavian Journal of Disability Research 21(1): 120–128. doi:10.16993/sjdr.590 Mizunoya, S.Mitra, S. and Yamasaki, I. (2016) Towards Inclusive Education: The Impact of Disability on School Attendance in Developing Countries. Florence: UNICEF Office of Research. Office for Disability Issues. (2010) Involving Disabled People in Social Research. London: Office for Disability Issues. Oliver, M. (1992) Changing the Social Relations of Research and Production? Disability Handicap and Society 7(2): 101–114. Shakespeare, Tom (2006) Disability Rights and Wrongs. London: Routledge. Shakespeare, Tom. (ed.) (2015) Disability Research Today: International Perspectives. London: Routledge. Shakespeare, Tom. (2018) Disability: The Basics. New York: Routledge. Stone, Emma and Priestley, Mark. (1996) Parasites, Pawns And Partners: Disability Research and the Role of Non-Disabled Researchers. British Journal of Sociology 47 (4): 699–716. Swartz, Leslie. (2018) Building Capacity or Enforcing Normalcy? Engaging with Disability Scholarship in Africa. Qualitative Research in Psychology 15(1): 116–130. Tregaskis, Claire. (2004) Constructions of Disability: Researching the Interface Between Disabled and Non‐Disabled People. London: Routledge. Tregaskis, Claire and Goodley, Dan. (2004) Disability Research by Disabled and Non‐ Disabled People: Towards a Relational Methodology of Research Production. International Journal of Social Research Methodology 8(5): 363–374. doi:10.1080/ 13645570500402439

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Watermeyer, B., McKenzie, J., and Swartz, L. (eds). (2019) The Palgrave Handbook of Disability and Citizenship in the Global South. Cham, Switzerland: Palgrave Macmillan. WHO and World Bank. (2011) World Report on Disability. Available at http://whqlib doc.who.int/publications/2011/9789240685215_eng.pdf (accessed 16 December 2011).

12 Discussing and theorizing global disability rights Hisayo Katsui

The previous chapters presented evidence of multi-layered power relationships in which the persons with disabilities studied in the different contexts have been systematically and continuously forced to remain at the periphery of society. The above case study chapters answered the first research question: How have global disability rights been localized and implemented in different contexts? In this chapter, the evidence of the above case studies are interlinked, discussed and theorised in this chapter, especially through the perspective of inequality reduction based on the analysis of power relationships. The case studies encompassed an analysis of different types of power, namely: 1) power to; 2) power over; 3) power with; 4) power as knowledge; and 5) power structure. The first, power to, refers to individual autonomy, the second to relational power that clarifies power imbalances among actors, the third to collective power among people with shared values, the fourth to the production of knowledge associated with the production of power relations based on Foucault (1963), and the fifth to the fundamental systematic forces that define the rules of power relations (Frediani, 2010: 180). In this chapter I try to answer the following two key questions.  

What are the challenges and opportunities of a human rights-based approach to disability at the intersection of disability, globalization and human rights? What possible strategies for Disability Studies are there for materializing social change in the near future?

They can be answered through three main themes in the following, namely: 1) self-determination and agency; 2) representation; and 3) globalization and disability rights.

Self-determination and agency In this part, self-determination is focused and discussed especially in relation to disability and development theories such as a capability approach (Sen, 1999, 2005; Nussbaum, 2003), a human rights-based approach (OHCHR, 2006) and the social model (Oliver, 1996; Shakespeare, 2006). In all these

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approaches, self-determination or agency is an important aspect in theory, while it is extremely complicated to ensure it in practice, as verified in the case studies as well as Chapter 11 on research methodology involving persons with disabilities. The methodology chapter vividly illustrated how the decisionmaking power is exercised over the research participants in the research processes for creating knowledge, even though utmost attention was paid to bringing out meaningful participation of the researched people with disabilities. When research on disability is conducted without a deliberate choice of applying a participatory research approach, then the power relationship between researchers and researched people is even more pronounced in favour of the former. Furthermore, it is often the case that mainstream studies and practices, namely development studies or other social studies as well as development practices, or what Grech (2011: 88) calls “neoliberal development projects”, do not pay sufficient attention to disability issues at all (United Nations, 2011). In addition, decision making power or self-determination right that is often linked to empowerment of persons with disabilities (Jenkinson, 1993; Finlay et al., 2008) has been criticised as being Eurocentric. For instance, van Houten and Jacobs (2005: 644) argue that the conceptualization of citizenship reflects Western view of human beings as being autonomous and self-reliant and is often understood as “(political) decision-making, deliberation and argumentation, the free and critical mind” (ibid.). Whereas in the case countries in the Global South and to a lesser extent in the Finnish case of persons with intellectual disabilities, individuals are part of larger units such as families, clans, (geographical, social and cultural) communities and so forth. The well-being of individuals is attended to, whereas the collective approach tends to be marginalized, which is problematic particularly in Southern contexts (Meekosha and Soldatic, 2011: 1387) in which disabilities are often family concerns (Grech, 2011: 94). The “free autonomous individual” is often associated with neoliberal views (Söder, 2009: 78). This means, on the one hand, an individualistic approach to human rights is not directly applicable in places where individuals are conceptualized as part of one or more groups. On the other hand, these collective norms and values often determine positions of persons with disabilities in society (Nyamnjoh, 2002; Kabzems and Chimedza, 2002), and impact many aspects of their lives (Hammad, 2018). In either context, the Global North or South, existing local power structures matter when localizing these ideas and approaches into practice because “There are no neutral agendas, there is no pre-discursive embodiment and there are no politics-free zones where stakeholders can unite in terms of absolute good” (Oinas and Jungar, 2008: 255). Decision making by persons with disabilities is not fully realised when their environments are not enabling and when they belong to a lower stratification of the power structures. McRuer (2006: 17–19) similarly argues that flexibility is a condition of the postmodern approach in which persons with disabilities are no longer regarded as absolute deviants in this recognized diversity in many cultural representations, but they are still subordinated to hegemony. In this sense, the reality is often “token diversity”.

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Hammad (2018: 686) similarly refers to the capability approach as an agency-focused framework and is critical of the inadequate accounting for the full human diversity among people. For instance, when accessible water and sanitation facilities are not available to children and persons with disabilities in Nepal, it is hard for them to exercise their agency when they go to a toilet or wash themselves. The evidence crystallized across the case studies that the priorities established by decision makers or other powerful actors, in comparison with persons with disabilities, too often meant full exclusion or only partial inclusion of persons with disabilities and their particular needs into their norms. Their decisions, particularly decisions of the more marginalized persons with disabilities, were restricted in terms of opportunities even when they are provided with the opportunity to make their own decisions. The capacity of many persons with disabilities is in fact bound by socio-cultural norms even when they are reasonably well-educated (Hammad and Singal, 2015; Katsui, 2012). In the case studies, family backgrounds such as the capacity of the families, the representative organizations of deaf persons, and the attitudes of their communities are also important perspectives in understanding the complexity of their self-determination right, agency or even co-agency. Globalization is also another layer, which will be elaborated separately. Such deeply rooted negative attitudes against persons with disabilities follows low expectations of some persons with disabilities not to perform on an equal basis as the others without a disability. As a result, they are often not provided with equal opportunities, which can contribute to making them internalize the negative image of society and hence possibly reinforce their low self-esteem. This psychological pressure along with barriers of other types, such as physical and institutional barriers, eventually tend to isolate them from society. In this way, society tends to normalize the isolation and segregation of persons with disabilities and to reinforce the negative attitude, if special attention is not paid to deliberately cutting this vicious circle (Katsui, 2005: 90–91). Due to respective contexts and the disabling environment, this kind of social structure tends to be perpetuated. Mitchell and Snyder (2015: 8) point out that persons with disabilities know all too well the processes by which their lives are fixed on well-directed paths by the state. This is not only applicable to the state but also to more powerful actors in relation to persons with disabilities in society. Vehmas and Mäkelä (2009: 52–53) similarly acknowledge social arrangement of the context and find it “notoriously difficult and slow to change” because they are collectively created and maintained, and also historically deep-seated. In other words, a multi-layered approach is needed to make the social change aimed at, so that persons with disabilities acquire the same basic opportunities as peers without a disability. Materializing self-determination, agency or even co-agency of persons with disabilities is complex in different contexts.

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Isolation

Passivity

Low Self-Esteem

Low Expectation

Few Opportunities

Internalisation

Figure 12.1. Vicious circle (adapted from Katsui, 2005: 90).

Representation and globalization of the disability movement The discussion on self-determination and agency directly affects the way representation of persons with disabilities is realized. Even when they are provided with the opportunity to make their own decisions under circumstance in which prejudice and discrimination are prevalent as in all the case study countries today, this might well be “false representation” (Katsui, 2005: 17). Paul Hunt (1966: 11) claimed similar circumstances for persons with disabilities in the 1960s: “I have seen disabled people hurt, treated as less than people, told what to do and how to behave by those whose only claim to do this came from prejudice and their power over them.” The vicious circle that vividly illustrates power relationships tends to pressure persons with disabilities to behave according to what persons without a disability and various other normativity define their role in society. Westland and Wiman (2002) argue that the partial solution is not considered to be inclusion but as exclusion. Even when decision-making power and agency are granted through their representation, they might still reiterate the mainstream discourse simply because they are also part of society. This is often true especially when it comes to grassroots persons with disabilities who have subjective experiences of disabilities but have not established more objective overviews of disabilities. Shakespeare (2006: 195) argues, “Just because someone is disabled does not mean they have an automatic insight into the lives of other disabled people”, due particularly to the heterogeneity among persons with disabilities. As a result, representation of persons with disabilities is highly contentious in which disability politics play a huge role as was observed in the Ugandan case study. As for the globalized disability movement, it has increased its visibility by extending its arms to peripheral persons with disabilities and increasing its

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constituencies, while to some extent becoming polarized due to the very diversity, leaving some groups further behind, with and without intention. Therefore, several persistent challenges of representation of persons with disabilities in different forums still stand in the way of the realization of disability rights. It is not an overstatement to describe the global disability movement as having been diversified in both good and bad ways. Inequalities between global leaders with disabilities and lay persons with disabilities and their families at the grassroots tend to be increasing in the case study contexts rather than decreasing. Meekosha and Shuttleworth (2017: 186) claim that collective identity is not the route to change as it may increase victimhood and is thus problematic, even though it can improve the self-esteem of some individuals. They continue by saying that identity has the tendency to produce heroes but not necessarily organically-produced heroes, when they are coerced to access to disability services. Similar observation of the polarization was made by Pleyers (2010) on other movements in the era of globalization. In this part, the context of global disability movement has been analysed in relation to existing social movement theories through the concept of representation. Pleyers (2010: 263) states “It is possible for states, the civil society, local communities and citizens to become actors in the global age”. Disability rights have been part of the alter-globalization movement in the global context. His sociological analysis of the alter-globalization movement is very useful in investigating on the representation aspect of the global disability movement, even though he does not mention persons with disabilities and the disability movement in his book. His choice of excluding an analysis on disabilities within the alter-globalization movement naturalizes able-bodiedness and thus reinforces embodied normalcy in the global movement discourse. This theme will be revisited below. Nevertheless, his analytical framework is insightful. Pleyers (2010) categorizes the movement activists into two groups: those of the way of subjectivity (Pleyers, 2010: 33–105) and those of reason (Pleyers, 2010: 107–178). The former group focuses on autonomous experiences free of global neoliberalism and seeks participatory democracy. Such values are implemented in these activists’ daily life, including their movement and organizations, local communities and neighbourhoods in innovative and convivial ways through learning by trial and error. He states, “People who are excluded or marginalized often have little experience and few theoretical arguments but the experience they have is profound. It is on this basis that they build innovative movements in way of subjectivity” (Pleyers, 2010: 96). The limitation of this group is its extensive focus on self-activism, which leaves global engagement behind and helps to reproduce the very system that they were originally against (Pleyers, 2010: 101). The latter groups are mostly intellectuals and experts who use their specialized expertise and knowledge on certain issues to construct and present rational alternatives against neoliberalism with relevance and feasibility. They tend to privilege efficiency over participation and institutionalize the movement through top-down decision making to become a counter power for regulating the economy or any other

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hegemony in power. Here, Foucault’s power of knowledge is exercized. The Iron Law of Oligarchy (Michels, 1966) often takes place as a classic phenomenon in the evolution of the social movement is materialized. The most eloquent example would be that the activists become politicians themselves (Pleyers, 2010: 248). Thus, dichotomization between leaders and members is a risk for fragmentation and absorption, while it can be an opportunity when “cross-fertilisation” takes place by maximizing both positive sides towards creation of multiple alternatives (Pleyers, 2010: 220). Players continues by claiming that the multiple alternatives are needed to create a world in which many worlds fit (Pleyers, 2010: 218), and in this very sense, even a single person and a local organization can become a global actor (Pleyers, 2010: 263). When many persons with disabilities at the grassroots level are isolated from each other and are not even affiliated to any organizational or group activity, a nuanced interpretation of this social and global movement theory is needed when applying it to the disability sector. Yet, Pleyers’ sociological analysis on the alterglobalization movement is useful to understanding disabilities and their movements today, not only in the case study contexts, but also in a global context. First, a disparity exists between the leaders and “ordinary people with disabilities” and even among the ordinary people in local and global disability movements, which was particularly evident in the Ugandan and Finnish case studies. The disability movement also follows a similar trend in that many leaders are from privileged socio-economic contexts (Shakespeare, 2006: 75). Their relationship resembles that of the alter-globalization movement between the activists of the way of reason and those of subjectivity in terms of their participation and decisionmaking approaches. Thus, without conscious efforts in cross-fertilization, the movement has the potential elevated risk of dichotomization and absorption, as has been observed to some extent, for instance in the cases of Uganda and South Africa in Chapters 7 and 10. Who can represent local and global disability movement needs sensitive attention to the diversity of persons with disabilities due to the power relationships between them. Representation of persons with disabilities, therefore, encompasses a complicated reality in which they are positioned in society and power relationships in or out of the groups.

Global disability rights and neoliberalism In the case studies, many interviewees stated that implementation of global disability rights are often difficult due to resource constraints and low priority applied to including disability in mainstream practice by decision makers. When representation and self-determination of persons with disabilities tend to be precarious, the obvious consequences are not only the non-implementation of disability rights, but also the reinforcement of inequalities or even the amplification thereof. This part teases out the challenges of the neoliberal system and rules that are not likely to pay enough attention to human diversity in order to reduce inequalities.

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It is only recently that the Sustainable Development Goals (SDGs) (with their motto: “Leaving no one behind”) finally paid attention to persons with disabilities by referring specifically to the group in the targets and subsequently set indicators that require disaggregated data. When the Convention on the Rights of Persons with Disabilities (United Nations, 2006) and the SDGs clearly set global and universal objectives and principles such as equality and non-discrimination, their localization and operationalization continue to face difficulties because the existing power relationships and structures matter (Katsui, 2012: 128–167; Hammad, 2018), as was exemplified in the case studies. However, the aim of a global disability rights approach or a human rights-based approach is to establish universal norms and is criticized because of the absence of public scrutiny to discuss why and how (Katsui, 2012: 142). It is also criticized for undermining the agencies’ own identification of values (Frediani, 2010: 182–183). Frediani rephrases that “approaches to development can explicitly incorporate this reflexivity of their (the agencies’) role in the process of moving from rhetoric into transformation, without being coerced, manipulated, and co-opted into preconceived goals” (ibid.: 185). Values based on local context and individuals are often undermined and even overruled by universal norms (Katsui, 2012: 142). In other words, although human rights have been a “discursive process, not a static set of prescriptive values” that were “formed in the process of struggle and debates” (Meekosha and Soldatic, 2011: 1387), a global disability rights approach tends to depoliticize itself. Thus, it needs critical self-reflection to examine whether the approach really fits the reality when it is used. The universality and globalization of human rights discourse needs to be discussed particularly in the context of individual persons with disabilities and their environmental contexts (please see Chapter 4 of this book). A Ugandan Member of Parliament representing women with disabilities, Safia Nalule, states: “As much as we are fighting for the human rights and dignity and whatever, you cannot be a dignified person when you are begging, for example, when you are sleeping in somebody’s house, when you are a totally dependent)” (personal interview on 15 February 2008 in Kampala, cited in Katsui, 2012: 144). A deaf woman at the grassroots also describes her life and this different starting point: In [year], I started this job. I go there. At 6 pm, I finish my work. After that, I go back home. One day when I went back home, there were people knocking the house down with big stones. There are rich people who can buy land without us noticing. When I went back, my house was demolished. All the buildings which were in the place were demolished … Right now I have 5 boys and 1 girl. I had 4 other children but they died. I stay in a very small house. I sponsor my children to go to school, one child goes to school. Very little money. I don’t buy clothes. I just wash and keep them clean. In [year], my husband passed away. … All the houses

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She is one of many examples of persons with disabilities at a grassroots level whose concern is not global disability rights realisation as such, but to live a hand-to-mouth survival (Goodley, 2012: 37; Katsui, 2012: 149). In fact, many persons with disabilities at the grassroots level in the case study countries including Finland did not use human rights as part of their daily terminology. Those individuals were often isolated from each other and did not form a collective identity of persons with disabilities, while their representative organizational leaders spoke with human rights terminologies and argued for their realization. The diverse contexts and historicity, including post-colonialism, dispossession, war and other consequences, deserves more attention in the global disability discourse (Meekosha 2008; Meekosha and Shuttleworth, 2017: 186–187). For instance, there are too many cases of preventable disabilities due to lack of vitamin A, leading to the deaths of between 250,000 and 500,000 people every year, half of whom die within 12 months of losing their sight (WHO, 2019). Health disparity (Krahn et al., 2015) or health inequity (Arcaya et al., 2015) are important perspectives not to take disability and poverty for granted. In the UK, industrialization was perceived as a turning point from the agrarian past when persons with disabilities were pragmatically integrated into the family system (Oliver, 1990). Interestingly, deaf people in Uganda (Katsui, 2012) and women with disabilities in Ethiopia (Katsui and Mojtahedi, 2015) play significant roles in digging gardens and in managing household chores still today, although their equal opportunities are limited in terms of education, employment and social life, to name a few. The impact of neoliberalism is too frequently much more pronounced in their lives in diverse forms of poverty, particularly when statutory social protection system is limited or non-existent in the Global South. This kind of disciplinary self-reflexivity, or thinking from diverse societies and cultures, is an important point of departure for the discourse of global disability rights and their implementation, which is distinct from the North-oriented theories of disability studies. Even though poverty and disability have attracted attention as a collective and intertwined phenomenon in both Global North and South (Yeo, 2003; Benedict and Eide, 2011; WHO and World Bank, 2011), neoliberalism as a global context, in which rights are negotiated and operationalized, is unavoidable in the analysis of global disability rights. Hence, I now turn to “morally questionable practices within neoliberalism” (Mitchell and Snyder, 2015: 8). In the wake of industrialization and thereafter, McRuer (2006: 88) asserts that a shift took place in the emergence of the

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identity of the able-bodied worker, and as a result a corresponding shift in identity of disabled bodies stemming from efficiency-oriented work ethics of capitalism (Chappell, 1998; McRuer, 2006: 88). Disability identities have emerged in multiple public locations including institutionalization of persons with disabilities in different parts of the world. In this context, Russel (2002: 128) calls disabilities historical social creations of capitalism, while other scholars call them a part of social model of or a material approach to disability (Goodley, 2012). Furthermore, Russel (2002) continues and points out that the implications of unemployment are “good” for the economy to discipline labour, to keep competition high and workers’ wages down, and to control inflation, thereby protect class privilege. She criticises the pure economist for rationalizing unemployment as “voluntary” without addressing the economic system or social relations that create it (ibid.: 126). In this discourse, reasonable accommodation is often watered down because employers’ right to property weighs more than the right to work of persons with disabilities. For instance, the introduction of the Americans with Disability Act (ADA) of 1990 to the United States did not change the order of priority in society and persons with disabilities have continued to be excluded from employment (ibid.: 117). “[When ‘rights-bearing persons’] lack the power and resources to properly ‘compete,’ rights can do nothing but reinforce the status quo, as those left powerless can do nothing [but] make sporadic and/or symbolic claims” (Young and Quibell, 2000: 757). This statement powerfully tells of the paradoxical context in which the global disability rights discourse is located. A human rights-based approach is to be implemented “out there, in this separate place” (Uvin, 2002: 9) and thus, it tends to depoliticize the global structure. It is often the relationship between the state and the citizens which is under scrutiny, while global phenomena and patterns often remain unanalysed (Katsui, 2012: 144). Ontoformativity is a concept in “understanding social dynamics in bodies as a form of global social embodiment” (Connell, 2011: 1371) and social process on a world scale, as it focuses on the power to create social realities on bodies through historical time (ibid.; Soldatic and Meekosha, 2012: 251). McRuer (2006: 57) similarly argues, “On me, not in me”, which refers to ways of seeing, questions about when and where looking inside the body works in tandem with the relations of looking shaped by global movements for social and economic justice and when and where looking inside the body works against those relations. (McRuer, 2006: 41–42) McRuer has named this Crip theory and asserts, “Crip experiences and epistemologies should be central to our efforts to counter neoliberalism and access alternative ways of being” (2006: 41–42). Meekosha and Soldatic (2011: 1392) then continue that this ontoformativity sheds light on impairment not as “natural” but “artificial”, also in relation to imperialism and

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colonialism. They call imperialism and colonialism the “root causes of global impairment” (ibid.) and thereby open the debate on redistributive justice. Neoliberalism and its competition and profit-centred ideology have affected disability services by “pushing for privatization, encouraging for-profit services, emphasizing competition, and imposing indirect controls in the name of accountability” (Connell, 2011: 1375), as was evident in the Finnish case study. More directly, capitalism has shaped the understanding of disabilities as “impaired productivity” or “exclusion from the labour market” (ibid). When employment has become the norm, only the right to decent work is promoted (e.g. ILO, 1996–2008). However, for persons with severe and profound disabilities, the right not to work is a highly relevant topic for discussion (Ngirabakunzi and Katsui, 2009: 133–136). Social protection systems (UN Special Rapporteur, 2015), global social policy (Deacon, 2007), and global tax (Uemura, 2016) are increasingly becoming relevant. Such alternative discourses that are distinguished from neoliberalism are indeed necessary (Pleyers, 2010: 218) when it comes to human diversity including persons with disabilities. Otherwise the global disability rights discourse continues to reinforce the neoliberal systems instead of deconstructing them. In fact, many of the leaders of the local and global disability movements increasingly experience “practices of neoliberal disability tolerance” that is called inclusionism, in which disabled bodies operate in the policy world of neoliberalism (Mitchell and Snyder, 2015: 4). Many persons with disabilities have coexisted in the neoliberal systems and contributing to making themselves invisible and thereby more normative (ibid.) in the very neoliberal systems, by leaving more marginalized and vulnerable persons with disabilities behind. McRuer (2006: 193) has pointed out the possible perpetual (and disciplining) co-optation to hegemony and normalcy. Therefore, the past, present and future of neoliberalism as a form of globalization have been constantly reconsolidated in disability studies, both in local and global contexts (cf. McRuer, 2006: 17, 201–8). Under the ever-growing inequalities around the globe, both in the Global North and South, many persons with disabilities at the grassroots have still been largely left behind (United Nations, 2011). In the 12th session of the Conference of State Parties to the CRPD in June 2019, the United Nations Secretary General recognized that there is “still a long way to go in changing mindsets, laws and policies to ensure the rights, opportunities and dignity of persons with disabilities around the world” (United Nations, 2019: 7). In this reality, charity-based organizations and organizations of persons with disabilities have been outreaching to persons with disabilities at the grassroots in Ethiopia, Uganda and Nepal, while social workers often play the role in Kyrgyzstan. Their approaches are too often more charity-based than human rights-based due to multiple causes including the negative attitudes of society in general, passivity and low capacity of persons with disabilities, lack of universal statutory social protection system based on individual needs and rights, and so forth. In a charity-based approach, persons with disabilities play a passive role without much decision-making power, while professionals

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and experts play an active role. A human rights-based approach cannot be fully operationalized without good capacity of both rights-holders and duty-bearers and without an enabling environment (Katsui, 2012). This is the discussion that is also taking place in Finland for increasing freedom of choice for social and health services, for instance in the form of personal budgeting for service users. Personal decision making is a “global trend” and yet not quite unproblematic as it could create inequalities particularly for those who cannot make the selections and decisions without support (Grönroos, 2019). Individualistic efficiency is increasingly becoming an important part of neoliberalism, which is a great threat to the realization of global disability rights especially for those who are marginalized among persons with disabilities. Without the outreach of more powerful persons and passive participation of persons with disabilities through solidarity, love and/or protection systems, persons with disabilities continue to be left out and remain invisible, passive, inferior and/or deviant (Katsui, 2012). In this sense, even a passive participation in a top-down charity-based approach can be one small step forwards towards inclusion under the circumstance where they have already been left far behind and especially when it is the very first interventions and engagements in a disabling environment. The first steps necessarily entail significantly asymmetrical power relationships.

Criticisms against hitherto critical disability studies Having analysed disabilities based on the case study evidence and more broadly from a global perspective, it is quite understandable that Meekosha and Shuttleworth (2017: 179) argue that “the current sociopolitical climate demands that attention be paid to other crucial issues as well – that is, the crisis of representation, the rise of new social movements and identity politics, globalization, and the fragmentation and compartmentalization of everyday life.” When a global perspective is applied, more critical social theory becomes a necessity for disability studies. Critical disability studies (CDS) is developed away from binary understandings, namely social versus medical model, and has furthered disability studies theories with diverse critical social theories by continuously reassessing and self-reflecting own discipline (Goodley, 2012; Meekosha and Shuttleworth, 2017; Vehmas and Watson, 2013). Derrida’s (1976) deconstruction theory is useful in explaining how medical professionals, Northern actors, and those in power use binaries in the discourse, position themselves as superiors whereby they become dependent on persons with disabilities, the Global South and less powerful actors, and create linkages between discourses and material interventions (Grech, 2011: 89; Katsui, 2012: 12). This homogenization process is similar to what the Northern feminists went through in the 1980s (Grech, 2011: 89; Meekosha and Shuttleworth, 2017; 184–186). CDS understands much more diversity in societies, cultures as well as historicity of disability production with a careful focus on complex, continuing and reinforcing power relations. Intersectionality theory has been often utilized for analysing the complexity. As CDS teases out power relational dynamics for a more participatory and egalitarian society,

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Foucault’s power and knowledge theory is useful for understanding the current governmentality such as control and micropolitics of power (Meekosha and Shuttleworth, 2017; 175, 183), as were seen in the case studies. It can be argued that a “global” critical disability studies (GCDS) has a few more distinct characteristics. They include the followings: 1) paying attention to globalisation of disablism; 2) meaningful inclusion of the perspectives from both the Global South and North; and 3) trials to incorporate not only local but also global causes of power relational dynamics into its analysis. Of ever-growing concern to the CDS, including GCDS, is the preoccupation with theory and academic world over politics (Barnes, 2012; Meekosha and Shuttleworth, 2017). Vehmas and Watson (2013: 638) argue that an examination of disability must involve an engagement with moral/ethical and political issues, because neither impairment nor disability are neutral differences but “real differences” (ibid.) or undesirable differences (Shakespeare, 2006). They further mention that the challenge to normativity, more precisely what is good or bad, or right or wrong, is missing. They continue that categorization and its analysis are required to abolish oppression, and criticizes CDS for not engaging in justice and normativity discussions. These scholars represent Critical Realist Disability Studies in which disability is seen as an interaction between persons with a health condition and wider contexts and differentiate themselves further from the Critical Disability Studies that pay attention to the construction of categories and the role of culture (Shakespeare, 2018: 158). The case study evidence supports the ideas that binaries are not the way forward and verify that more nuanced, complex and multiple approaches and many categories, rather than an approach and binary categories, exist across different contexts. It is also noteworthy that categories are nevertheless not clear-cut and rather continual in reality (see Katsui, 2012: 140–141): between persons with and without disabilities, a human rights-based approach and a charity-based approach, North and South, impairment and disability, to name a few. For disability studies to make the created knowledge useful for political and pragmatic day-to-day changes, disability studies must continue with the tradition of having clear political objectives of social transformation with or without categories: with categories to elaborate on disability-specific vulnerability (Chapter 4 on vulnerability) and without categories to investigate on the assumed normality (Barton, 1993), for instance. Meekosha and Shuttleworth (2017: 189) and Goodley (2012) admit that knowledge is power and theory development is integral to power, and are hopeful for the CDS to create a space for both activism and theory. When we looked closer into the knowledge creation process of disabilities, the space is indeed too limited, especially when a study focuses on persons with disabilities at the grassroots level in the Global South and from a global perspective. This chapter, therefore, ends by arguing ways forward for disability studies.

Strategies for disability studies: a way forward Having discussed theoretical, methodological, policy and practical gaps and challenges in different contexts in relation to the current global systems for

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realizing global disability rights, this latter part is dedicated to learning from the experiences and lessons to move forward. Some of the following strategies have been discussed for making social changes, especially at the United Nations World Conference in Beijing in 1995 in the context of gender equality. When the hitherto targeted approach to women, namely a “women in development” approach, was proved to be insufficient for making social and structural power changes in gender relations, this twin-track approach was also introduced to mainstream disability in society (Bell, 2000: 3) which is represented as a “gender and development” approach. It became evident that a targeted approach only to women would not dramatically contribute to change attitude of men and society in general for gender equality. Uvin (2004) calls this targeted intervention an “add-on” project of human rights and development and criticises its missing engagement with a wider context. Therefore, the twin-track approach started to address changes of environment in addition to the targeted approach to designated groups. As for the disability sector, Shakespeare (2006: 34) similarly states that impairment is often exacerbated by social arrangements. Hence, this twin-track approach is widely accepted in the disability sector today (United Nations, 2004; DFID, 2004; Naughton, 2008; European Commission, 2010; Bergwall, 2010). Yet, a targeted approach for persons with disabilities continues to be important. It includes provision of assistive devices, disability services, allowances, medical treatment, medication, and rehabilitation services that Wolff (2007) called personal enhancement, cash compensation and targeted resource enhancement. Substantive equality particularly through disability-related needs, or the reasonable accommodation stipulated in the CRPD, is indispensable for social justice (Katsui et al., 2014; Heikkilä et al., 2020). Despite the reputation of the twin-track approach, mainstreaming has not been on the agenda until recently (Albert, 2006). It is a recent development at the policy level, especially at the international policy level, and there have been significant changes of disability inclusion into mainstream discourses, if not mainstream practices yet. The enactment and adoption of the following verify this globalizing trend of disability inclusion efforts against global disablism: the UN Convention on the Rights of Persons with Disabilities (2006), the Incheon Strategy (2012), Sustainable Development Goals (2015), the Sendai Framework for Disaster Risk Reduction (2015), the Humanitarian Disability Charter (2016), Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities in Africa (2018), the United Nations Disability Inclusion Strategy (2019), and the reporting requirement with disability marker for the OECD (2019) and so forth. These international instruments and strategies are useful for us to understand and connect theories with policies and further with practices. In addition to the twin-track approach, in 2009 the Finnish Ministry for Foreign Affairs established a triple-track approach by adding one more strategy, “disability in policy dialogue, country negotiations and multilateral cooperation and information dissemination” (European Commission, 2010: 122). The needs of continuous negotiation efforts towards disability inclusion were still relevant,

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even when policies and laws are in place in the case studies, as social transformation is not at all automatic after their adoption. The fourth strategy is internalization of disability inclusion in the implementing (and also currently non-implementing) agencies themselves, such as international, governmental, non-governmental and private organizations and agencies. This “walk the talk” is an important strategy, as was clear from the discussion of power politics even within the disability movement, let alone other organizations and agencies that are not profiled as disability organizations. These form the four-track approach to disability inclusion. When we come back to the future development of disability studies, this four-track approach is insightful in contemplating and conceptualizing our ways forward. First, targeted disability studies continue to be important. Disability studies was developed in the struggle of the disability movement in various parts of the world, which has now developed into an academic discipline with local and global significance. Disablism is a global phenomenon in which normal bodies have advantageous positions over disabled bodies both ontologically and epistemologically. Yet, it has been a continuous struggle for disability scholars as resources are scarce despite the significance of the discipline to the entire population, because disability continues to be considered “a minority issue” (Shakespeare, 2018: 1). Some austerity measures have hit academia and the disability movement hard in many countries where resources had been scarce (Shakespeare, 2018: 162–163). Disabilities have been under-resourced and thus under-researched. The Swedish Research Council for Health, Working Life and Welfare opened a specific call for disability studies at the end of 2018, as a result of which 14 research projects received funding of around €5.3 million in 2019 for the next few years. This should not be one-off funding in Sweden at 20-year intervals, while other countries can also allocate resources to create sustainable mechanisms for ongoing collection of both quantitative and qualitative data on disabilities. As the reporting obligation of the CRPD is accelerating, the needs of scientific research data and more targeted resources need to be made available to disability studies. Second, disability needs to be included in mainstream disciplines. As long as other mainstream disciplines including economics, politics, medicines, laws and education, continue to exclude disabilities as irrelevant and persons with disabilities from their research as a disturbance creating bias in research data, academics continue to create knowledge that is based on compulsory ablebodiedness (McRuer, 2006). Cross-fertilisation (Pleyers, 2010: 220) between mainstream disciplines and disability studies bring about change in academic culture and research process and results that are disability inclusive. The academic environment, including changes in the physical and attitudinal environments, for students and teachers with disabilities to perform their full capacity on an equal basis with others without a disability, requires careful attention. More good practices of alternative ways in inclusive thinking are needed to scale up, starting from the entrance examination and staff

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recruitment until the graduation ceremony and career opportunities respectively for students and teachers with disabilities. When disabilities and persons with disabilities become an integral part of research and teaching objects and subjects, we will have good knowledge to contribute to change. For that, and third, constant dialogue and continuous negotiation efforts are still necessary for creating awareness for disability inclusion in academia. Much more critical self-reflection of ourselves in academia pertaining to our own positioning, power, and academic structure and system are needed, as academia is certainly part of the neoliberalistic system, whether we want it or not. Fourth and last, disability studies needs constant self-reflection and selfassessment to remain relevant and political to “walk the talk”. Deliberate efforts are increasingly needed to balance both academic and social impact making efforts in the time of academic neoliberalism that has been pressuring researchers to become entangled in the market-oriented system of efficiencybased logic. Academic outcomes are obviously often theoretical in nature. Even so, both teaching and research work can be much more inclusive and accessible through participation of persons with disabilities and reasonable accommodation for them. For instance, lecturers or guest lecturers with disabilities as “experts by experience” in university teaching (Lähteinen et al., 2017; Chapter 8 of this book) and more accessible and inclusive means of knowledge dissemination in addition to conventional academic texts are some of small steps forward, as was discussed in Chapter 11. Much more can be done within disability studies to make knowledge creation and dissemination accessible, inclusive and available. Inclusion also needs to be expanded for those with other characteristics including age, sex, ethnicity, religion, political affiliation, sexual orientation and so forth. If disability studies scholars do not pay careful attention to these, knowing the power relations and their deteriorating impact on human beings, who will? We can choose between the opportunity to lead by example or take the risk of reinforcing the global disablism and inequalities penetrated deeply in academia and elsewhere. Starting from oneself is a natural way forward.

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Benedict, I. and Eide, A.H. (2011) Disability and Poverty: A Global Challenge. In A. H. Eide and I. Benedict (eds) Disability and Poverty: A Global Challenge. Bristol: Policy Press, 1–14. Bergwall, K. (2010) Disability as a Human Rights Issue: Background Paper to Conducting a Dialogue. Stockholm: SIDA. Chappell, A.L. (1998) Still Out in the Cold: People with Learning Difficulties and the Social Model of Disability. In T. Shakespeare (ed.) The Disability Reader. London: Cassell, 211–220. Connell, R. (2011) Southern Bodies and Disability: Re-Thinking Concepts. Third World Quarterly 32(8): 1369–1381. Deacon, Bob. (2007) Global Social Policy and Governance. London: Sage Publications. Derrida, J., (1976). Of Grammatology, trans. Gayatri Chakravorty Spivak, Baltimore, MD: Johns Hopkins University Press. DFID. (2004) Disability Knowledge and Research: Assessing Connection to DFID’s Poverty Agenda. Department for International Development. Available at http:// www.dfid.gov.uk/r4d/PDF/Outputs/Disability/PolicyProject_IsabelOrtizReportFina l1.pdf (accessed 6 February 2012). European Commission. (2010) Study of Disability in EC Development Cooperation. Available at http://ec.europa.eu/europeaid/what/social-protection/documents/223185_ disability_study_en.pdf (accessed 23 February 2012). Finlay, W.M.L., Walton, C. and Antaki, C. (2008) Promoting Choice and Control in Residential Services for People with Learning Disabilities. Disability and Society 23 (4): 349–360. Foucault, Michael. (1963) The Birth of the Clinic. London: Routledge. Frediani, A.A. (2010) Sen’s Capability Approach as a Framework to the Practices of Development. Development in Practice 20(2): 173–187. Goodley, Dan. (2012) Dis/entangling Critical Disability Studies. Disability and Society 28(5): 631–644. Grech, S. (2011) Recolonising Debates or Perpetuated Colonality? Decentring the Spaces of Disability, Development and Community in the Global South. International Journal of Inclusive Education 15(1): 87–100. Grönroos, Reija. (2019) Soten valinnanvapaudesta on tullut trendi – “Nuoret hyötyvät, entä muistisairaat tai mielenterveysongelmaiset”, kysyy tutkija. Yle Uutiset. 5 December. Available at https://yle.fi/uutiset/3-11081738?fbclid=IwAR2qxrwhSW qOALOP8NvULoIw__uRpszx_ZcwQLsfcBcIhJqHTdLy8m0kLRU (accessed 5 December 2019). Hammad, Tehmina. (2018) Education of People with Disabilities: A Capability-Context Framework of Culture. Disability and Society 33(5): 685–704. doi:10.1080/ 09687599.2018.1455577 Hammad, Tahmina and Singal, N. (2015) Education of Women with Disabilities in Pakistan: Enhanced Agency, Unfulfilled Aspirations. International Journal of Inclusive Education 19(12): 1–21. Heikkilä, Mikaela, Katsui, Hisayo and Mustaniemi-Laakso, Maija. (2020) Disability and Vulnerability: A Human Rights Reading of the Responsive State. International Journal of Human Rights. doi:10.1080/13642987.2020.1715948 Hunt, P. (ed.) (1966) Stigma: The Experience of Disability. London: Geoffrey Chapman. Available at https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/ library/Hunt-a-critical-condition.pdf (accessed 28 November 2019).

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ILO. (1996–2008) Decent Work and Vocational Training: Definition of Decent Work. International Labour Organization. Available at http://www.ilo.org/public/english/ region/ampro/cinterfor/publ/sala/dec_work/ii.htm (accessed 14 May 2009). Jenkinson, J.C. (1993) Who Shall Decide? The Relevance of Theory and Research to Decision Making by People with an Intellectual Disability. Disability, Handicap and Society 8(4): 361–375. Kabzems, V. and R. Chimedza. (2002) Development Assistance: Disability and Education in Southern Africa. Disability and Society 17(2): 147–157. Katsui, H. (2005) Towards Equality – Creation of the Disability Movement in Central Asia. Helsinki: Helsinki University Press. Katsui, H. (2012) Disabilities, Human Rights and International Cooperation: Human Rights-Based Approach and Lived Experiences of Uganda Women with Disabilities. Helsinki: The Center for Human Rights of Persons with Disabilities. Publication Series No. 8. Katsui, Hisayo, Ranta, Eija M., Yeshanew, Sisay A., Musila, Godfrey M., Mustaniemi-Laakso, Maija and Sarelin, Alessandra. (2014) Reducing Inequalities: A Human Rights-Based Approach in Finland’s Development Cooperation with Special Focus on Gender and Disability. Turku: Institute for Human Rights. Katsui, H.Kazakunova, G. and Mojtahedi, M. (2020) Changing the Paradigm of Disability from Stigma to Equity in University Social Work Education in Kyrgyzstan. Public Administration and Development 2020, 1–7. doi:10.1002/pad.1875 Katsui, H. and Mojtahedi, M. (2015) Intersection of Disability and Gender: MultiLayered Experiences of Ethiopian Women with Disabilities. Development in Practice 25(4): 563–573. Krahn, Gloria L., Walker, Deborah Klein and Correa-De-Araujo, Rosaly. (2015) Persons with Disabilities as an Unrecognized Health Disparity Population. American Journal of Public Health 105(52): 198–206. Lähteinen, Sanna, Raitakari, Suvi, Hänninen, Kaija, Kaittila, Anniina, Kekoni, Taru, Krok, Suvi and Skaffari, Pia. (2017) Social Work Education in Finland: Courses for Competency. National University Network for Social Work (SOSNET). Rovaniemi. Available at https://www.sosnet.fi/loader.aspx?id=a10e5eeb-3e9f-47dc-9cae-6576b58a 4a6e (accessed 4 December 2019). McRuer, R. (2006) Crip Theory: Cultural Signs of Queerness and Disability. New York: New York University Press. Meekosha, H. (2008) Contextualizing Disability: Developing Southern/Global Theory. Keynote paper given to 4th Biennial Disability Studies Conference, Lancaster University, 2–4 September 2008. Meekosha, Helen and Shuttleworth, Russell. (2017) What’s so “Critical” about Critical Disability Studies? In Lennard J. Davis (ed.) The Disability Studies Reader. London: Routledge, 175–194. Meekosha, Helen and Soldatic, Karen. (2011) Human Rights and the Global South: The Case of Disability. Third World Quarterly 32(8), 1383–1397. Mitchell, David T. and Snyder, Sharon L. (2015) The Biopolitics of Disability: Neoliberalism, Ablenationalism, and Peripheral Embodiment. Ann Arbor: University of Michigan Press. Michels, R. (1966) Political Parties: A Sociological Study of the Oligarchical Tendencies of Modern Democracy. New York: Free Press.

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International policies and laws UN Convention on the Rights of Persons with Disabilities (2006) Incheon Strategy (2012) Sustainable Development Goals (2015) Sendai Framework for Disaster Risk Reduction (2015) Humanitarian Disability Charter (2016) Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities in Africa (2018) United Nations Disability Inclusion Strategy (2019)

13 Concluding remarks Hisayo Katsui

The global disability movement has come far in securing a place for persons with disabilities to represent themselves at high-level meetings and succeeding in disability inclusion in international standards, norms and goals. The visibility of disability has increased dramatically in different spheres on a global scale. Yet, inequality seems to be increasing rather than decreasing, at least according to the case studies. In this chapter, academic theories and the evidence from case studies were strongly connected and discussed in the context of enriching the discourse of globalization, inequality reduction strategies and disability inclusion towards realizing the global disability rights. The objective of the book was to answer the four key research questions listed below. Throughout the previous chapters, different aspects of the questions were analysed with evidence and theories and discussed both locally and globally. In this concluding chapter, the aim has been to answer these questions and end the book with suggested future areas of research.

1 How have global disability rights been localized and implemented in different contexts? Today, the human rights of persons with disabilities are globally recognized at the international level in a range of laws and policies and has entered into the mainstream discourses of human rights and development. Disability rights have made a breakthrough during the last two decades to come to the surface of global political agenda as well as implementation strategy discussions in the era of the CRPD. However, visibility has not come to the surface as much as gender equality. As most of the countries have ratified the CRPD by now, localization and operationalization of the CRPD has been taking place globally and simultaneously, if taking place at all. Many countries are at the very least under pressure from international and/or local actors to implement the principles of the Convention into their local practices. The selected case studies revealed local struggles in this implementation process due to multilayered causes of discrimination against persons with disabilities and their families. The four strategies, namely: 1) mainstreaming disability inclusion; 2) targeting activities specifically for disability inclusion; 3) dialogue and

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negotiation; and 4) “walking the talk”, are all extremely challenging as of now in the case countries where neoliberalistic systems tend to overrule local values and historicities as well as the principles stipulated in the Convention. Chapter 4 showed that today’s education practices have been built on a long, historical development of segregation policy in the education sector against children with disabilities, particularly in the Global North (Vehmas, 2005). This history implies that it is not a coincidence that disablism has been taking place in different locations across country borders. In Ethiopia, inclusive education practices are still patchy and isolated from overall social changes. In Nepal, the mountainous geographical condition is one of the huge physical barriers for accessibility of anyone, but especially for persons with disabilities. When persons with disabilities cannot often participate in village meetings to join collective decision making opportunities on their matters for various reasons including attitude, lack of assistive devices and interpreters, physical barriers, their belonging caste, and so forth, water and sanitation right of persons with disabilities have not been taken into account on an equal basis with others without a disability. Ending open defecation has been the national policy of the government, which has led to improvements in water and sanitation facilities for the overall population. This has left persons with disabilities further behind and increased the inequalities, as others increasingly have the access to toilets. Such an adverse effect has been taking place in many parts of the world, when voices of persons with disabilities are systematically not heard. The Kyrgyz case study informed us that even current higher education continues to reinforce derogative terminology and negative attitudes when the lack of awareness of lecturers is not problematized. When it comes to the Ugandan case study, we understand that the lack of awareness of persons with disabilities themselves and misuse of internal disability politics can be part of the reinforcing structure against democratic changes and equality. The Finnish case study verified the transition taking place from institutional living to community-based living of persons with intellectual disabilities is not without its problems. Disability services, including housing services, are often subject to competition based on market principles. The “Not for sale!” campaign explained the importance of thorough negotiation between stakeholders when colliding values co-exist in the same locations such as this one. Especially when persons with disabilities themselves do not have the equal capacity to negotiate their rights due to perpetuating social structural barriers as well as their impairments, supported decision making and representation become central. Equal recognition before the law is relevant. Yet, in the Finnish case, we observed that decisions about alternative housing are often topdown without any alternative to choose from. Parents are also over-protective because of discriminatory social attitudes based on their experiences of bullying, for instance. The timeframe set by the government to end institutional living of persons with intellectual disabilities by the end of 2020 has been considered to be a good strategy and yet at the same time, it has led to the

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pressures of efficiency and effectiveness. Cost-efficiency has also been an important element in making decisions about housing services balance against self-determination rights of persons with disabilities and/or their proxies. When community-based disability services and support are limited and the social attitude is negative, it is hard for persons with disabilities to be deinstitutionalized to a full extent beyond physical relocation. In the worst case, there have been scandals in several places, for instance in South Africa, when deinstitutionalization did not take care of community changes and careful preparations of preconditions, which led to many deaths of former residents with psychosocial and intellectual disabilities (OHCHR, 2016). Accessible and affordable disability-specific services, general services, medical treatment, rehabilitation, medication, and prevention measures are all an important part of deinstitutionalization, as was pointed out in General Comment Number 5 of the Committee of the CRPD. Even though each case study focused on one or a few examples of human rights, they exemplified the interconnectedness of a number of rights, histories and presents, and complexity of realizing human rights even to a limited extent, let alone to the full extent required by the diverse group of persons with disabilities. In the process of negotiation and dialogue, other colliding values have too frequently overruled the core principles enshrined in the Convention such as equality and non-discrimination. Negative attitudes have been deeply ingrained in societies of all the case study locations, which is pronounced in the form of multiple barriers against the people being researched. As disablism, other forms of discrimination and their influences are observed at multiple levels, solutions also have to be numerous (Katsui, 2012: 166). The objectives of freedom and well-being of people in the capability approach, human rights realization in a human rights-based approach, and social transformation in the social model are far from reality and are still a valid objective today across the case studies’ context and beyond. In addition, another layer of discussion pertaining to morality or ethical consideration is also relevant (Vehmas and Watson, 2013: 638). Especially when biological conditions also limit equal opportunities (Shakespeare, 2006), including agency opportunities, even if everything else in society is perfectly in place, reducing inequalities of opportunity is a more realistic shorter-term goal than eradicating them, particularly for those with profound intellectual and multiple disabilities. In other words, inequalities are embodied as well as stemming from diverse social arrangements of historicity and present. It is indispensable to recognize this diversity including fundamental individual vulnerability (Beckett, 2006) or innate vulnerability (Virokannas et al., 2018: 4) when localizing and implementing global disability rights in local practices (also Heikkilä et al., 2020). Furthermore, human rights are not static but change and expand. For instance, it was only in 2010 when the United Nations General Assembly adopted human rights to water and sanitation, which has certainly increased interventions in this sector. The MDGs aimed at halving many of the problems, while the SDGs aim at universality. For instance, Goal 1 of the MDGs

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included a target to halve the proportion of people whose income is less than USD1.25 a day, and Goal 7 to halve the proportion of the population without sustainable access to safe drinking water and basic sanitation. The education-related goal was about primary schools. When it comes to the SDGs, 15 years later, eradication of poverty, access to water and sanitation for all, and quality and inclusive education for all at all levels are targeted. More and more people enjoy different kinds of development and human rights, while too often persons with disabilities are disproportionally left behind, and thereby the inequalities between persons with and without disabilities, and those among persons with disabilities, are at high risk of increasing rather than reduced, as was observed on many occasions in the case study countries. Degrowth thinking will be relevant to linking not only with environmental issues but also with the global disability discourse to increase the well-being of people, consciousness to environmental impact, and economic stability from the global perspective (Andreoni and Galmarini, 2013). This link is an area for further research. If human rights are progressively realized, global disability rights continue to struggle to gain a foothold among the many competing priorities today such as environmental, economic and corona crisis. That is, local and global power relations that are reflected in priority makings and progressive realization, are of utmost importance for legitimizing the localization and implementation of global disability rights in practice. In this conjunction, the commonly used phrase in the Convention, “on an equal basis with others”, needs to be elaborated further (Katsui, 2012: 32). Who are “others”? Is it enough to assume that “others” are those without a disability in the same country? Or do we need to start conceptualizing “others” as those with and without disabilities within and beyond the country borders to pay more nuanced attention to the diverse realities in which persons with disabilities are heterogeneous and inequalities across different groups and countries are increasing? These are valid questions to pose in future studies.

2 What are the challenges and opportunities of a human rights-based approach to disability in the intersection of disability, globalization and human rights? A human rights-based approach to disability has been promoted for the last several decades by the global disability movement and its ever-growing allies. The UN CRPD is a paramount example of the approach, which has been ratified by as many as 181 member states. This human rights-based approach to disability has brought about a notion change, or even a paradigm change, in comprehending disabilities and positioning of persons with disabilities in relation to people, society and states. This approach has had an impact on the redefinition of persons with disabilities as an integral part of humanity and human diversity, as the UN Universal Declaration of Human Rights enshrined in the very first article: all human beings are born free and equal in

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dignity and rights. Inequalities experienced by persons with disabilities have finally become global and political agenda for representatives of persons with disabilities to engage with mainstream actors including the most and more powerful stakeholders. The approach has been enlarging such opportunities to a great extent, as was exemplified in the list of international agreements in the previous chapter. At the global policy level, opportunities are ample for the global disability rights to further penetrate mainstream discourses. As this approach has become the mainstream in the discourse of global disability rights, it has not been sufficiently and self-critically reflected upon. As argued in Chapter 12, this approach needs to be examined to see whether it fits the reality where it is to be applied, especially when concerned persons with disabilities in the very context need first to meet fundamentally basic needs such as the acquisition of a mother tongue for deaf women in Uganda or access to toilet facilities for Nepalese children and persons with disabilities. Hence, the significant gaps between the theory and practices remain a challenge, as has been criticized for the low or non-operationalization of this approach (Kennedy, 2004: 30; Uvin, 2004: 19; Seppänen, 2005: 34). Operationalization of this approach requires profound analysis of the diverse and multiple layers of inequalities and discrimination, as was discussed above. Such analysis is complex (Alston, 2005: 803) and yet undermined. More attention should be paid to background social, political and historical conditions (Kennedy, 2004: 12; Batliwala, 2007: 89). Uvin describes the approach as otherwise remaining on the “moral high ground” (2002, 2004). OHCHR (2006: 24) asserts that priority must be given to “the most marginalised”. In reality, “trade-offs” at the expense of the less privileged often take place (Kennedy, 2004: 17) because human rights depend very significantly on the power relations that exist within the society or the group (Alston, 2005: 806). In the case studies, we observed that access to toilets of persons without a disability was prioritized over those with disabilities in Nepal; community-based living of persons with milder intellectual disabilities was prioritized over those with profound intellectual and multiple disabilities in Finland; the Members of Parliament had a bigger voice than other delegates with disabilities attending the general assemblies in Uganda. The global slogans of the SDGs, “Leaving no one behind” and the slogan of the global disability movement, “Nothing about us without us”, effectively mobilized persons with disabilities to represent themselves to be part of decision-making processes that are relevant to them and their lives. Representation, however, is not simple in the disability sector and beyond, as was discussed especially in the Ugandan case study. We all still need critical self-reflection to “walk the talk” and decolonize our knowledge based on assumed normality. Today we have started to acknowledge the importance of context analysis, including inequality analysis in society but also within groups for the operationalization of rights. The increasing trend to disaggregate disability data and budget breakdown is a good start in accumulating more knowledge and statistics, but that alone is far from enough. More resources must be allocated to compensate both ontological and epistemological inequalities and

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vulnerabilities. The UN Special Rapporteur on the Rights of Persons with Disabilities discussed this issue of social protection in her annual report in 2015 and pointed out the resource implications as well as good capacities needed by implementing institutions. She warned that the progressive realization obligation should not be understood as discharging States from any obligations until they have sufficient resources. On the contrary, States must take constant steps to improve the enjoyment of the right to social protection of persons with disabilities, with a time- bound plan and measurable benchmarks to help monitor progress [ … ] The obligation of progressive realisation prohibits deliberate retrogressive measures in the exercise of the right to social protection. (UN Special Rapporteur, 2015: 23) For materializing human rights, a basic income, sound taxation system, or even a global tax system (Uemura, 2016), need to be discussed much more as a highly relevant aspect of the global disability rights for redistribution of wealth and universalization of social protection, education and other basic social services as a very foundation. Global social policy is thus also highly relevant (Deacon, 2007). These are areas of further research.

3 What are the challenges and opportunities for participatory research on disabilities in different contexts? Participation of persons with disabilities is an important human rights principle, and it is also applicable to research. As research is a place to re/create scholarly knowledge, this is a particularly important space for them to be part of. More researchers have been trying to involve persons with disabilities in the forms of emancipatory research or participatory research. Further inclusive research has been targeted specifically for the involvement of persons with intellectual disabilities (Peuravaara, 2015). The way persons with disabilities are part of research is diverse (Strnadová et al., 2016) which thus poses a question: participation on whose terms? Several critical aspects have been discussed on participatory research. For instance, the decision on who can be part of a research project is thus a representation problem (Bogdan, 2001; Katsui, 2012) or an inclusion and exclusion problem (Peuravaara, 2015). In each of the case studies, deliberate efforts were made to involve persons with disabilities in a number of ways, not only limited to conventional ways as mere objects of research but also as active research participants and at times as co-researchers and co-authors creating knowledge together (e.g. the case studies of Kyrgyzstan and Uganda). Yet, a positive impact of participatory research for all is highly questionable when equal opportunities to be part of a research cannot be guaranteed to all to the same extent, partly due to methodological choices and partly also due to the severity of impairments.

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Once again, therefore, not only social/academic arrangements but also biological conditions matter for materializing participation of researched persons with disabilities. Another aspect is the balance between the demands of scientific rigour and the expectations of ideological and social relevance (Tangvald-Pedersen and Bongaardt, 2016). Scientific rigour might (or might not) contribute to change the climate of society (Shakespeare 1996, 119), while it is not necessarily of interests of the researched people in the case studies. It is the researchers’ own motivation, interests, faith or more pragmatically resource availability that triggers opportunities for and implementation of research. Very often our excuses are the timeframe and resources of a research that necessarily limit us. Academic life is embedded in the neoliberalistic system in which we manoeuvre ourselves to the best extent possible, when we want to. We often need to apply for research funding with high academic quality with a predetermined agenda and theoretical framework, without which it is hard for us to secure any research funding. For instance, I did not invest my longer time and more resources to first train the Ugandan deaf women in sign language so as for me to be able to communicate directly with them, and only then to plan a research project with them. Instead, I made my conscious decision to compromise myself into a participatory research approach, as full participation of many of the researched people in the case studies was too time-, energy- and money-consuming. McRuer (2006) is highly critical that we are contradictory in our discipline by measuring efficiency and effectiveness of both our students and ourselves. I tend to agree with him. Much more critical self-reflection of ourselves in academia pertaining to our own positioning, power, and academic structure and system are needed, as we are certainly part of the neoliberalistic system, whether we want to be or not. Disability studies and its (failure of applying) participatory research approach allow us to think twice and challenge our own assumptions, which thus is very useful for us to seek for alternative methodological ways of doing a research project in particular, and acting in society in general.

4 What are possible strategies of disability studies in the near future for materializing social change? As discussed, the main strategies are fourfold. First, scaling-up disability studies in terms of depth and width by allocating more resources, as much more information is needed on global disability rights and their local implementation practices. There is still a huge gap between the laws and practices. Article 31 on statistics and data collection stipulates that collecting information on the implementation practices is an obligation. At the same time, Article 32 of the UN CRPD enshrines that international cooperation through information exchange of good practices and lessons learned is constantly needed to operationalize the rights in a context in which power dynamics co-exist and intertwiningly reinforce historically ingrained social marginalization of

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persons with disabilities. Financially and otherwise supporting disability research, including disability studies, is an important part of the state obligation. As a multidisciplinary study, the disability studies do not take disabilities for granted but critically investigate the diverse aspects of disabilities, and thus would contribute to transform society with newly created knowledge with alternative perspectives. For instance, the economically explained dichotomy between developed and developing countries easily collapse when looking at the world from the perspectives of disabilities. In terms of disabilities and social justice, all countries are developing countries (Katsui, 2005: 147), let alone global social justice. When looking at societies from the perspective of disabilities and further that of intersections between disabilities and other diversities, normative positivism is challenged (Mitchell and Snyder, 2020). The non-normative body is therefore an opportunity to think through values, ethics and politics that congregate around such bodies (Goodley, 2012) towards alternative values, ethics and politics. Therefore, disability studies is an important discipline to rethink our own foundations and deserves much more attention. Second, mainstreaming disabilities into other academic disciplines is another strategy for increasing knowledge on disabilities. Collaboration between disability studies scholars with those of other disciplines would increase the chance of mainstreaming disabilities. When mainstream disciplines continue to create and recreate knowledge on human beings and society by excluding a significant part of the population of persons with disabilities, the biased normativity continues to prevail. Our norm needs to be reconceptualized by including marginalized groups and their experiences. The assumed normality is increasingly becoming an idealized notion of normality (Barton, 1993). Beauty industries, for instance, urge society to highly value idealized bodies and left others with a counter image, while blood and organ shipment from Global South to Global North entails embedded multilayers of power relationships (Connell, 2011: 1376; Katsui, 2012: 145). From the global perspective, disabilities are not often accidents when invasion, dispossession, war and the hegemonic process of normalcy play significant roles (Meekosha and Shuttleworth, 2017: 186–187). Not only in the Global South but in United Kingdom, a study revealed that persons with intellectual disabilities die 23–27 years earlier than male peers and female peers without a disability respectively and found that 19% of potentially avoidable incidents are the result of delays in case or treatment, gaps in service provision, organizational dysfunction, or neglect or abuse (University of Bristol, 2018: 9). When mainstream studies include disability and persons with disabilities and disaggregate data as a default, more disability-inclusive knowledge is generated. The academy as a whole shares the responsibility for maintaining and recreating the normality. Third, dialogue and negotiation with different stakeholders is an important strategy, even after disability inclusion has already become high on political agenda and is enshrined in policies and laws. As mentioned earlier, many

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countries have already ratified the UN CRPD and made it part of their legal instrument, and yet struggle with its implementation. Uvin (2004) pointed out this way of incorporating human rights terminology into mainstream discourse depoliticizes the underpinning problems but legitimizes the status quo. Moreover, in some contexts, a legal approach such as a court case might be helpful for social transformation, while in many other contexts, people prefer to settle in negotiations especially when confrontation with an authority is taboo due to the power relationships that we have been discussing throughout the book (see Katsui, 2014). Mainstreaming disability “on paper” is still not mainstreaming disability in practice. Disability studies have great potential to contribute to this dialogue and negotiation with relevant and valid knowledge from the alternative point of view of disabilities. Fourth, self-reflection and self-criticism are another important strategy for contributing to social transformation through disability studies. McRuer (2006: 159–165) poses a question on writings of academics which should be decomposed to move away from “Western culture according to a subjectobject model” in which persons with disabilities are located too often in the object position under professional-managerial ethos. The academic world and “our very bodies are caught up in, or even produced by neoliberalism that demands order and efficiency” (ibid.: 170). The global disability rights discussions and case studies have made us think how equal opportunities are also possible in the practices of disability studies such as teaching, planning and implementation of research, and information dissemination. In the context of academia, “on an equal basis with others”, the repeatedly used phrase in the UN CRPD, has hardly been translated into our practices for persons with disabilities, particularly for persons with disabilities of the Global South and for those with severe intellectual and multiple disabilities. We need more effort to secure their meaningful participation in academic work, when and only when they want to do so. We need decolonial knowledge production and rethinking of power in academia. Inclusion is not limited only to persons with disabilities but those of intersections with other characteristics such as age, race, gender, sexual orientation, political background, religious background and so forth, as well as marginalized people without a disability. Although we gradually and increasingly try to include persons with disabilities into academic work, we are still far from reaching the goal of inclusion. As inequalities are also embodied, an efficiency seeking direction along which academia is developing, endangers our opportunities to be aware of human diversity in our own work. More methodological innovation is thus necessary in disability studies.

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Epilogue Hisayo Katsui

Time magazine selected Greta Thunberg as the person of the year in 2019, when we were finalising this book manuscript. She says, I have Asperger’s. I am on the Autism Spectrum [ … ] it can definitely be an advantage, and especially in such a big crisis like this, when we need to think outside the box. We need to think outside our current system. (https://www.youtube.com/watch?v=f_v92wMFWJE) She stresses the importance of Autism as her strength and difference from anyone else. She is an environmental activist and not a disability activist. Yet, her new perspective, due to her disability, is very different from the assumed normal reactions and behaviour, and attracted global attention. Not only a person like her, who gets a lot of both positive and negative attention, but all disabilities, including the most severe ones, challenge our assumed normality and ethics. Her example is a good reminder for us to “think outside the box” as she says, because sustainability is simply impossible without taking persons with disabilities into account as an integral part of the solutions rather than problems.

Index

ableism 97 accessible environments 35–36, 54, 125; see also barriers; reasonable accommodation activism see disability activists affirmative action 25–26, 75, 76, 80, 84, 91 Africa: governance, challenges to 125–126; and ratification of CRPD 125; South Africa 128, 129, 166; Tanzania 12, 108–114, 125; Uganda 12, 75–91, 133; see also Ethiopia African Caucus 126 African Disability Forum (ADF) 122, 127 African Union 123–124 African Union Disability Architecture (AUDA) 124 ageing population 1 agency 11, 39–40, 145, 147–148 Alajos Kiss v Hungary 34 alternative living: and institution-like practices 67–70; see also independent living Americans with Disability Act (ADA), 1990 153 attitudes 70–71, 147–148, 154 austerity 19, 48, 66, 158 autonomy, and institutions 29 barriers: attitudes 28, 70–71, 147–148, 154; to education 54, 56; market principles vs disability rights 71–72; to political participation 80; to WASH services/initiatives 110–112 Béláné Nagy v Hungary 34 belonging 71 benefits, social-security 34, 99; see also social protection programmes/systems

blind persons see visual impairment bullying 55, 71 capability approach 11, 147, 166 capitalism 153; see also neoliberalism caretaker–care receiver paradigm 39 case law, and disability rights 26 charity-based approach 12–13, 50, 103, 127 children: and deinstitutionalization 65, 70; and disability politics 84; intellectual disabilities 65; rights treaties 26, 47; see also education choice 62, 69–70, 155 citizenship 50, 146 civil society 126, 129–130 Cold War 78 collaboration 21, 95, 112–113, 127, 136, 171 collective approaches 146 coloniality 142 communication difficulties 138–139 community living see independent living computers, access to 136, 138 consulting companies, Finnish, and WASH 109, 110 contextual factors 12, 29, 51, 147, 155 Convention on the Rights of Persons with Disabilities (CRPD) 26, 28, 33, 61–62, 78, 94, 107, 151; and civil society 129–130; and human rights 3, 13–14, 50–51; and localization 18–19; see also UN, Special Rapporteur on Disability Crip theory 153 Critical Disability Studies (CDS) 155–156 cultural relativism 12, 51

Index deaf people: social protection/rights, lack of 151–152; Ugandan women, political/civil participation 75–88, 137, 141 Declaration on the Rights of Disabled Persons (1975) 8, 27 decolonization 78, 142 deinstitutionalization: Finland 62–74; South Africa 129, 166 dependency 27, 28–29, 32, 101 development, right to 78 disability, definitions 7, 8–10, 14 disability activists 20, 62, 101, 102, 104, 149, 150 disability councillors, Uganda 76, 78–79, 80 disability identity cards 111 disability inclusion/exclusion: localization 18–19; and the SDGs 14 Disability Studies 19–20, 170–172 Disabled People South Africa (DPSA) 128–129 Disabled People’s International (DPI) 9, 13, 61 disabled people's organizations (DPOs) see organizations of persons with disabilities (OPDs) disablism 156, 157, 158 discrimination 14, 29, 35–36, 48, 71 diversity, “token” 146–147 drinking water see WASH services, Nepal and Tanzania education: history of special education 49–51; inclusive 35–36, 47–48; see also higher education education, Ethiopia: access 51–53; knowledge dissemination 140; politics of inclusion 56–57; risk of dropping out 53–56 efficiency, and neoliberalism/individualism 153, 155, 170, 172 emancipatory research approach 20–21 embodiment 28–29 employment 80, 95, 98, 122, 127, 151–152, 153; see also social protection programmes/systems empowerment 20–21, 79–80 enabling environments 155, 158–159; see also barriers; reasonable accommodation equal opportunities see opportunities

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equality: gender 127, 157; and inequality analysis 3, 140; substantive 10, 25–26, 40, 157; see also inequalities ethics 64–65, 95–96, 102, 104, 108, 109, 134, 139, 156 Ethiopia, education in 48, 51–57, 125, 140 EU Social Protection Systems Programme (EU-SPS) 100–104 eugenics 50 European Court of Human Rights (ECtHR) 26, 29, 34 European Union Agency for Fundamental Rights (EUFRA) 63–65 exclusion 1, 14, 38, 48, 50, 56–57, 97, 108, 111–113, 139, 153–154; see also barriers; discrimination; institutionalization; segregation “experts by experience” 101, 104, 159 families 1, 71, 146, 152; and deinstitutionalization 66; and exclusion 111; gender discrimination 52; and poverty 55 Fernandes de Oliviera v Portugal 34 Fineman, Martha 24, 28–29, 30–33, 37 Finland: deinstitutionalization process in 62–74; Disabled Persons’ Organizations (DPOs) 112; personal budgeting 155; stakeholders, WASH initiatives 109–110 Foucault, M. 155–156 gender discrimination, and education 52 global disability movement 19 globalization 13; and the disability movement 148–150; and disability rights 150–155 Goodley, Dan 133–134 grants 134 Grech, Shaun 95, 142, 146 group homes see independent living guided living 67 handbook, on WASH services/initiatives 112–113 handicap 8 health-based approach 11 higher education 56, 94–104, 133–134 histories, personal accounts of disability 50 history, global, disability rights 6–15 history of special education 49–51 holistic approach 12

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human rights 24–40; and particularisation 24, 33–34; and universality 25, 32–33; violations 129, 166 human rights-based approach 3, 12–15, 94, 151, 167–169; and neoliberalism 78; and particularisation 33–37; and vulnerability 33–40 hygiene see WASH services, Nepal and Tanzania

knowledge: co-production 135–139; dissemination 139–141; and power 155–156 Könkkölä, Kalle 62 Kyrgyzstan: OPDs in 125; social work education 94–104 literacy 136; see also illiteracy Local Government Act (1997), Uganda 78–79 localization, and disability inclusion 18–19

illiteracy 77, 85–86, 88, 99 impairment 7, 10, 100 inclusion, and WASH services, Nepal and Tanzania 110 inclusive education 35–36, 47–48; see also education independent living 61–74, 99 individual differences 28–29, 37 individualism 146 Indonesia 130 industrialization 152–153 inequalities 3, 140, 154–155, 165, 166–167, 172; see also equality institutionalization 50, 97–98; see also deinstitutionalization institutions, and resilience 29–30 integration 48, 53, 57, 123 intellectual disabilities: and independent living 61–74; and life expectancy 171; profound. See profound intellectual and multiple disabilitiesUganda 79 internally displaced people's camps 77 International Classification of Functioning, Disability and Health (ICF) 11 International Classification of Impairment, Disability and Handicap (ICIDH) 8 International Covenant on Civil and Political Rights 7 International Covenant on Economic, Social and Cultural Rights (1966) 7 International Disability Alliance (IDA) 124–125, 127 International Labour Organization 122 Islam 96

National Council of Disability Act (2013), Uganda 91 National Disability Council (VANE) 62, 63 National Resistance Movement (NRM), Uganda 75, 79, 83, 91 National Union of Disabled Persons of Uganda (NUDIPU) 75, 80; general assemblies and disability politics 76, 78–79, 81–91 Nazism 50 neoliberalism 10, 19, 71–72, 78, 133–134; and development projects 146; and global disability rights 150–155; and individualism 146 Nepal: WASH, barriers in access to 110–112, 147; WASH, participatory research 108–114 non-governmental organizations (NGOs) 52, 109, 112, 119, 122, 129, 131 normativity 148, 156, 171

Joint Monitoring Programme (JMP) Working Group on Equity and Non-Discrimination (END) 107

occupational therapists 100 Office of the High Commission for Human Rights’ (OHCHR) 119, 120

Mäkelä, Pekka 102–103, 147 Mandela, Nelson 128 market principles see neoliberalism Mazima, Eliphaz 75 McRuer, Robert 133, 146, 152–153, 154, 170, 172 medical model of disability 2, 8, 27, 61, 97, 100 Members of Parliament, Uganda 81–83 Mental Health Uganda (MHU) 84 Millennium Development Goals (MDGs) 35, 107–108, 121

Index opportunities 9, 11, 147, 166, 168, 169–170, 172 organizations of persons with disabilities (OPDs) 48, 68, 76–77, 79, 81–91, 111, 112 125 parents see families participatory research approach 20–22, 108–114, 132–142 personal assistants 62, 99, 100, 134 personal budgeting 155 personal hygiene, support with 69 Persons with Disabilities Act (2019), Uganda 91 Physically Impaired against Segregation and Disabled People’s International 10 physiotherapists 100 planning and resource allocation, participatory research 133–135 political representation/participation, Uganda 75–91 poverty 20, 55–56 power relations 39, 139, 146, 148, 151; and alternative living 68–70; attitudes 70–71; and knowledge 155–156; and OPDs, Uganda 81; in research process 76–77, 137 Priestley, M. 136, 137 primary education, Ethiopia 51–54 profound intellectual and multiple disabilities 36, 40, 66, 138, 154 psychosocial disabilities 79, 130 reasonable accommodation 13–14, 36–37, 53, 125, 134, 153; see also accessible environments rehabilitation 126 relational approach 2, 10 representation, and disability politics 148–150 researchers with disabilities 134 resilience 29–30, 37 resource allocation 133–135 rural areas, social workers 99 Salamanca Declaration and Framework for Action (1994) 47 sanitation see WASH services, Nepal and Tanzania segregation 50, 94, 97–98, 147 self-determination 36, 61, 68–70, 78, 138–139, 145–147 self-esteem 71, 79, 147–148 self-reflection 155, 159, 170, 172

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Sen, Amartya 11, 130 Shakespeare, Tom 2, 11, 12, 132, 134 sign language 62, 82, 85, 87–88, 138 social model of disability 2, 8–10, 20, 28, 37, 94 social movements 8–9, 10, 61 social protection programmes/systems 34, 98–104, 152, 154 social transformation 139–140 social work education, Kyrgyzstan 94–105 socio-cultural norms 147 South Africa: Constitution, and the Bill of Rights 128; deinstitutionalization scandal 129, 166; Reconstruction and Development Program 128 Soviet Union, legacy, and Kyrgyzstan 94, 96–98 special education, history of 49–51 special rapporteurs, role of 118–121; see also UN, Special Rapporteur on Disability spirituality 96, 104 stakeholders: African regional 123–124; Finland 66, 68; global 121–123; and WASH, Nepal and Tanzania 109–110, 112–113 state, the: as a responsive actor 29–37 stigma 27, 29, 54, 71, 103, 104 Stone, E. 136, 137 substantive equality 10, 25–26, 40, 157 supernatural belief 49 Sustainable Development Goals (SDGs) 14, 57, 107–108, 151 Tanzania 12, 108–114, 125 teacher training, Ethiopia 53 toilets 110, 111, 147, 168 Tregaskis, Claire 133–134 Uganda: political participation and representation 75–91, 133; visual impairment 12 Uganda Parents of Children with Learning Disabilities (UPACLED) 84 Ugandan National Association of the Deaf (UNAD) 81–82, 83, 85 UN: buildings, and access 122–123; Committee of the Rights of Persons with Disabilities 47–48, 56;

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Index

Convention on the Rights of the Child (1989) 26, 47; Department for Economic and Social Development (UNDESA) 119; Development Programme (UNDP) 78, 122, 127; Economic Commission for Africa (ECA) 123; International Year of Disabled Persons 8, 9, 61; Partnership on the Rights of Persons with Disabilities (UNPRPD) 122; Secretary General 1, 154; Special Rapporteur on Disability 118–131; Standard Rules on Equalization of Opportunities for Persons with Disabilities (1993) 47, 118, 119; UDHR (1948) 7, 78; see also Convention on the Rights of Persons with Disabilities (CRPD) unemployment 153 United Nations see UN United Nations International Children’s Emergency Fund (UNICEF) 56, 122, 123 Universal Declaration of Human Rights (UDHR) (1948) 7, 78 universality, and human rights 25, 32–33 universities 94–105, 133–134 utilitarianism 11

Vehmas, Simo 49, 102–103, 147, 156 visual impairment 12, 36; children with 35, 53, 54–56; and political representation 79–80, 88 vulnerability theory 24–42 WASH services, Nepal and Tanzania 107–114, 147 water and sanitation: schools, Ethiopia 54; see also WASH services, Nepal and Tanzania well-being 11, 166 wheelchair users 36, 122–123 witchcraft 12 women and girls: and education/illiteracy 52, 77, 86; and gender equality 127, 157; and social movements 10; Ugandan 75–78, 137, 141, 151–152 World Health Organization (WHO) 1, 7–8, 11, 27, 122 World Network of Users and Survivors of Psychiatry (WNUSP) 130 World Programme of Action Concerning Disabled People (1982) 8, 27, 61 youths 65, 70, 84; see also children Zambia 128